If you saw me this morning, you would think to yourself, "she needs this"...
And you would be right, I need at least that!
House full of coughing last night, myself included and I am
E-X-H-A-U-S-T-E-D!!!!
I think it is all allergy related because the Hubs has no signs of it and mine and Monkey's has been improving with allergy meds but Peanut refuses to take any medication, except chewable vitamins...hmmm I wonder if there is chewable allergy tabs in his small of a dose...mental note to look into it (that I will soon forget I am sure):) His little cough will serve as a reminder today, oh yeah and every time I think of my level of exhaustion, especially while riding the bike at the gym today...Maybe I should rethink this training schedule and do the bike on Monday, then I may-be more likely to do the spin class because come Friday, after working out all week, I am too chicken to join a spin class that will most likely cause me to drop dead from exhaustion or worse cause me to puke in front of a class full of people, mortifying enough to cause me to drop dead too...ok enough rambling about my exhaustion and I will be back on later to share a recipe and to do some 40 day challenge catch-up blogging...I have been a busy bloggin bee the last couple days, my private family blog was a little behind as well... :)
Friday, May 20, 2011
Thursday, May 19, 2011
Over-reacting...as per usual of me!
So Monkey made a comment this morning that his teacher was taking each of the kids out to do special stuff with shaped and colored blocks...so maybe I freaked about that comment in her note too much. It just goes to show how much I lack trust in the public school system, can you blame me with all the stories out there about bad experiences. I want to hear some good experiences; maybe it will restore my faith, a little :) Anyone got some good stories for me?
Wednesday, May 18, 2011
Public School, Only Three Weeks In...need I say more?
Monkey is now in the Public School Early Intervention Services and I am grateful that we live somewhere that provides that but he has only been going for almost three weeks and I am already having daily anxiety...maybe it is the defensive Mom in me or I have been poisoned by the "water" after reading so many other Moms' struggles with special education in the public school systems. I was thinking I was getting myself all prepared for it by doing the Wrights Law course on Advocating for your special needs child but nothing has prepared me for the emotional rollercoaster I have been on for the last three weeks. I feel like at every turn his teacher is questioning me about his symptoms, and things I have reported him doing versus what she sees in class. I just don't get it, we have had three independent evaluations done and they all came to the same conclusion. He is on the Spectrum, where on the spectrum is still not fully diagnosed, the Doc is leaning towards Asperger’s, the School Board Evaluators said Very High Functioning ASD, with no developmental delays in his intellectual levels and the Florida Center said Sensory Processing Disorder and possible ASD (pending further evaluations from the Neuro Doc, see his conclusion above) Anyway, after all that I now have a teacher that feels like blaming my parenting for his behaviors...huh? Didn't I play the blame game for years, frustrated and confused why Super Nanny's tactics didn't work, researching every possible discipline technic I could find and trying it with no consistent results. It was a nightmare and a confusing nightmare at that. After his diagnosis I terrified but in some ways relieved because I now had an explanation for so many things I had questioned for some many years! So I immediately put him on the gluten free and low dairy diet and saw improvements, then I added some vitamins and dietary supplements and continued to see improvements but the tantrums, fixations, repetitive behaviors, delays in speech, delay in social interactions and sensory problems are still there, just not all to the same degree that they were before. Does that mean he is any less on the spectrum? I make a few diet changes and I see improvements in a few of those areas and suddenly there is cause for questioning the previous diagnosis...isn't the point of these changes to see improvements? My four year old still does not initiate play with his peers or stay engaged with his peers for very long. He has been there for three weeks and for the first two weeks he did not know a single kid's name in his class. Last week he finally came home saying one kid's name because it was his birthday that day. And two days ago he remembered another kid's name because they are riding the bus together. Isn't that delayed for a 4, almost 5 yr. old? The Teacher tells me after two days that she sees no sensory issues, she says she walked around the classroom making loud noises and he had no reaction, well then she should come over to my house when I turn on the vacuum without warning him or during a thunderstorm. Or how about she come over and try to cut his hair or nails for me?! UGH, so infuriating! After having these things brought up on only the second day of school I have lost a lot of trust in her. I feel like she is out to question everything and I find myself questioning all her actions. So my point of this rant is she sent a note home today saying "I had to test with him-not finished yet but doing well" And because I lack trust in her and feel like she is questioning everything I of course jump to conclusions, are you retesting him again? Are you trying to get him out of this early intervention program, is he going to be robbed of the early intervention services he deserves because this teacher decided he doesn't need them? All I know is I have been documenting everything, because I am super paranoid and frustrated with this experience and it has not been all I had hoped for :(
MIA and a Tri
I have been MIA again and I am sorry for that, I have gotten off schedule and had a busy couple months. I will be blogging my 40 day challenge still because I did do it, just didn't get the blogging part done. I now have a new (to me) laptop I got for Mother's Day so I can sit in the living room and blog while my little one plays (yes that was not plural on purpose, Monkey is in school now) SO much to catch up on so much to vent about, I just don't even know where to begin...UGH! That is what I get for not making the time to blog anymore and allowing life to get too busy for me time again. Am I the only one who struggles with this? I get in a groove and then one of the kids gets sick or decides they want to get up earlier and it throws everything off and I am so focused on getting routine back I forget about me (and my blog) :(
I have managed to make workout time again for me since Monkey started school. In fact I am training for a mini tri...call me crazy but I am kind of excited about it!
Mostly cause I am going to look like this by October....HAHAHAHAHAHA! Maybe after several trips to the plastic surgeon :)
Actually in all honesty I really just need some kind of goal to work towards rather than working out just to lose weight. I have been doing that for a year and in some ways I feel better but in others the weight loss has highlighted some very unhappy side effects of pregnancy and made me realize the only way i will ever wear a tight shirt again is with spanks (too hot in FL for that) or a tummy tuck. A bit discouraging since I am not too sure about the idea of plastic surgery. I need to learn to embrace my new "Mommy" body and move on so my new focus is to push this body beyond what I have ever done before in my life. I was going to do a half marathon last March but the training time was too short and so I gave up on it. I felt terrible about giving up but I was SO NERVOUS about running that far without proper training. This Tri is months away so I have plenty of time to prepare and I pretty comfortable with the different legs versus a big long run, running is not really my forte. I am super comfortable with the swim because I was a distance swimmer in High School and the swim is just a half mile...no biggie (lol), the bike ride I am not so comfortable with but I have lots of time to work on that and the run is only a 5k which is short enough that I have complete faith I can pull it off with some good training behind me. SO far my training has been mostly "running" to work on my cardio, but this week I started what I feel will be my training for the rest of the time: Monday-Run/Elliptical, Tuesday-Muscle Works Class (not really part of the training but it is part of my regular workout regimen and I am not ready to let it go yet cause I love it, maybe when we get closer to the tri I will have to give it up to get better prepared) Wednesday-Swim, Thursday-Muscle Works Class, Friday-Bike/Spin Class and hoping to get out for a Bike ride at least once over the weekend, depending on our schedule. I think this will be a good start and after I get back from my trip over the summer I will take it all to the next level for 6 weeks to really be prepared. Oh yes and I am trying to do yoga every night to relax my tired muscles and continue to get some prayer time in every night :)
More to come soon!
I have managed to make workout time again for me since Monkey started school. In fact I am training for a mini tri...call me crazy but I am kind of excited about it!
Mostly cause I am going to look like this by October....HAHAHAHAHAHA! Maybe after several trips to the plastic surgeon :)
Actually in all honesty I really just need some kind of goal to work towards rather than working out just to lose weight. I have been doing that for a year and in some ways I feel better but in others the weight loss has highlighted some very unhappy side effects of pregnancy and made me realize the only way i will ever wear a tight shirt again is with spanks (too hot in FL for that) or a tummy tuck. A bit discouraging since I am not too sure about the idea of plastic surgery. I need to learn to embrace my new "Mommy" body and move on so my new focus is to push this body beyond what I have ever done before in my life. I was going to do a half marathon last March but the training time was too short and so I gave up on it. I felt terrible about giving up but I was SO NERVOUS about running that far without proper training. This Tri is months away so I have plenty of time to prepare and I pretty comfortable with the different legs versus a big long run, running is not really my forte. I am super comfortable with the swim because I was a distance swimmer in High School and the swim is just a half mile...no biggie (lol), the bike ride I am not so comfortable with but I have lots of time to work on that and the run is only a 5k which is short enough that I have complete faith I can pull it off with some good training behind me. SO far my training has been mostly "running" to work on my cardio, but this week I started what I feel will be my training for the rest of the time: Monday-Run/Elliptical, Tuesday-Muscle Works Class (not really part of the training but it is part of my regular workout regimen and I am not ready to let it go yet cause I love it, maybe when we get closer to the tri I will have to give it up to get better prepared) Wednesday-Swim, Thursday-Muscle Works Class, Friday-Bike/Spin Class and hoping to get out for a Bike ride at least once over the weekend, depending on our schedule. I think this will be a good start and after I get back from my trip over the summer I will take it all to the next level for 6 weeks to really be prepared. Oh yes and I am trying to do yoga every night to relax my tired muscles and continue to get some prayer time in every night :)
More to come soon!
Sunday, March 6, 2011
Day 9 Part 1 Satan's Negative Thoughts
"We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ." II Corinthians 10:5
Today's devotional spoke of Satan's ability to get us at our weakest through our negative thoughts. Kathy Medina reflected on her long list of negative thoughts she has had over the many years that she has been caring for her now 9 year old Autistic Son. It made me reflect and think of all the negative thoughts I have had or still have.
What am I doing wrong?...I should have put him in school sooner, maybe he would make friends like his peers at church, it is all my fault he is going to be socially awkward....I am not equipped to handle this....I am a bad Mom, that is why he is disobedient....Why do I look like the circus act at the supermarket?...People are judging you, that is why they are stareing....I am neglectful of Peanut because Monkey is so much work....He is really fine and a typical child, I am just a bad parent.
It is amazing how quickly you can fall into these horrible feelings by just reflecting on them. My heart was racing and all the fear and anxiety of these thoughts cam flooding back when I was making this list. I had to spend a lot of time praying and reflecting to get out of this space. And then I remembered a verse that I had read the other night and it gave me comfort.
"I will instruct you and teach you in the way you should go; I will counsel you and watch over you." Psalm 32:8
God is my great counselor and he will guide me through this maze that will so easily destroy me if I allow Satan in. I just need to cling to God and his great plan for my family!
Today's devotional spoke of Satan's ability to get us at our weakest through our negative thoughts. Kathy Medina reflected on her long list of negative thoughts she has had over the many years that she has been caring for her now 9 year old Autistic Son. It made me reflect and think of all the negative thoughts I have had or still have.
What am I doing wrong?...I should have put him in school sooner, maybe he would make friends like his peers at church, it is all my fault he is going to be socially awkward....I am not equipped to handle this....I am a bad Mom, that is why he is disobedient....Why do I look like the circus act at the supermarket?...People are judging you, that is why they are stareing....I am neglectful of Peanut because Monkey is so much work....He is really fine and a typical child, I am just a bad parent.
It is amazing how quickly you can fall into these horrible feelings by just reflecting on them. My heart was racing and all the fear and anxiety of these thoughts cam flooding back when I was making this list. I had to spend a lot of time praying and reflecting to get out of this space. And then I remembered a verse that I had read the other night and it gave me comfort.
"I will instruct you and teach you in the way you should go; I will counsel you and watch over you." Psalm 32:8
God is my great counselor and he will guide me through this maze that will so easily destroy me if I allow Satan in. I just need to cling to God and his great plan for my family!
Day 8 Part 2....SO CONFUSED!
This Section of The Autism Sourcebook was the most difficult so far. It was about making the right decisions on treatment options. I am not sure why it was so confusing, it wasn't like it was all about the specific options but it seemed to navigate awkwardly and there was a lot of scientific data on early intervention that was a bit all over the place and in some areas she seemed to be addressing the what ifs rather than the facts. I don't know but the conclusion was that Early Intervention is best...which I already knew...
The part that I did find VERY helpful was "Knowing what to ask in your search for Treatments"
This is my condensed version of her section about asking questions.
1. Ask the Professional to explain the treatment in simple terms
2. Ask if you can observe a session
3. Ask what kind of results they have gotten from this treatment
4. Ask if there is a scientific study backing this treatment, make sure it was a controlled study done by real scientists and it was done by an outside agency
5. Make sure your child's whole "Team"(doctors, therapists and specialists) is on the same page and believe that all the treatments will work together.
6. Ask about your involvement level in the treatment (it should be pretty high, if they do not want you involved much you may question it)
7. How do they measure your child's progress, how often do they re-evaluate.
The last part of the section I skipped because it was about choosing a special school for your child. Which I will most likely not be doing for our son. If we do end up going that route at some point I will look back at that info.
I will share that we have stuck to mostly "natural" diet change treatments thus far and seen some improvements in his appetite and behaviors.(see my "Caring 4 Him" page) And we always know when he has had gluten or been without his "special juice" because his behaviors rear their ugly head more often then what has become "normal" for us.
The part that I did find VERY helpful was "Knowing what to ask in your search for Treatments"
This is my condensed version of her section about asking questions.
1. Ask the Professional to explain the treatment in simple terms
2. Ask if you can observe a session
3. Ask what kind of results they have gotten from this treatment
4. Ask if there is a scientific study backing this treatment, make sure it was a controlled study done by real scientists and it was done by an outside agency
5. Make sure your child's whole "Team"(doctors, therapists and specialists) is on the same page and believe that all the treatments will work together.
6. Ask about your involvement level in the treatment (it should be pretty high, if they do not want you involved much you may question it)
7. How do they measure your child's progress, how often do they re-evaluate.
The last part of the section I skipped because it was about choosing a special school for your child. Which I will most likely not be doing for our son. If we do end up going that route at some point I will look back at that info.
I will share that we have stuck to mostly "natural" diet change treatments thus far and seen some improvements in his appetite and behaviors.(see my "Caring 4 Him" page) And we always know when he has had gluten or been without his "special juice" because his behaviors rear their ugly head more often then what has become "normal" for us.
Saturday, March 5, 2011
Recipe Share...oops forgot what day it was!
YUM YUM YUM More Holiday Goodies
Today's Recipe is Gluten Free Gingerbread Cookies
Ingredients:
1 3/4 cup gluten free flour
1 1/2 tsp xanthum gum
1/2 tsp Cream of Tarter
1/8 tsp salt
1/2 tsp baking soda
3/4 tsp ginger
1/8 tsp. cloves
1/2 tsp cinnamon
1/2 cup cold butter
1/2 cup brown sugar
1 cold egg (like you would have a warm egg LOL)
1/2 cup Molasses
Combine dry ingredients in a large mixing bowl and mix well
Cut in butter
Combine sugar, egg and molasses in a smaller bowl and beat until well mixed and add to dry ingredients and butter mixture.
Bake 12 min at 350 degrees
Today's Recipe is Gluten Free Gingerbread Cookies
Ingredients:
1 3/4 cup gluten free flour
1 1/2 tsp xanthum gum
1/2 tsp Cream of Tarter
1/8 tsp salt
1/2 tsp baking soda
3/4 tsp ginger
1/8 tsp. cloves
1/2 tsp cinnamon
1/2 cup cold butter
1/2 cup brown sugar
1 cold egg (like you would have a warm egg LOL)
1/2 cup Molasses
Combine dry ingredients in a large mixing bowl and mix well
Cut in butter
Combine sugar, egg and molasses in a smaller bowl and beat until well mixed and add to dry ingredients and butter mixture.
Bake 12 min at 350 degrees
Day 8-Part 1 Glory to the One and Only
"No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love Him." I Corinthians 2:9
"'For I know the plans I have for you.' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.'" Jeremiah 29:11
"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight." Proverbs 3:5
If we knew the real plans for our life and could forsee the future would we change our path? I think a lot of us would. I think we would see the bad coming we would change our direction, it is Human nature. But when you have a close relationship with God you can forsee your future...you can see that he will always be there by your side no matter what. You can trust that he will get you through the bad because there is a greater purpose in that trial. Our lives as parents of kids with Autism or even just kids of special needs is definately a trail but if we continue to trust God's plan there are greater blessings waiting for us. THis is what Kathy Medina had to say in reference to her biblical verse (I Corinthians 2:9) for today's devotional "The Hebrew word for prepare is hetolmazo. It refers to the spiritual blessings prepared by God for those of us that belong to Him. Imagine that, God is preparing a spiritual blessing for each of us!" Like I have said in previous posts, sometimes the only thing that gets me through some days is trusting in God's plan for my Son. He is a Spiritual Blessing to me because he has taught me so much about God and myself.
"'For I know the plans I have for you.' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.'" Jeremiah 29:11
"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight." Proverbs 3:5
If we knew the real plans for our life and could forsee the future would we change our path? I think a lot of us would. I think we would see the bad coming we would change our direction, it is Human nature. But when you have a close relationship with God you can forsee your future...you can see that he will always be there by your side no matter what. You can trust that he will get you through the bad because there is a greater purpose in that trial. Our lives as parents of kids with Autism or even just kids of special needs is definately a trail but if we continue to trust God's plan there are greater blessings waiting for us. THis is what Kathy Medina had to say in reference to her biblical verse (I Corinthians 2:9) for today's devotional "The Hebrew word for prepare is hetolmazo. It refers to the spiritual blessings prepared by God for those of us that belong to Him. Imagine that, God is preparing a spiritual blessing for each of us!" Like I have said in previous posts, sometimes the only thing that gets me through some days is trusting in God's plan for my Son. He is a Spiritual Blessing to me because he has taught me so much about God and myself.
Thursday, March 3, 2011
Day 7-Part 2 Opinions of the Whys
So I am continuing my study of The Autism Sourcebook for my non-biblical study. I had every intention of getting caught up on my studies and getting started on the Law Course but it just has not happen. My Hubby and I have spent the last 4 days he has had "off" trying to give each other breaks and trying to get some "us" time in too rather than digging into this 40 day challenge I have started. Which is great for us but not so great for my personal goals. I have struggled to get caught up on my blogging because we have been taking the time to focus on us rather then just me focusing on Monkey. Of course part of our couple time is about him because I think for the rest of our lives we will be worried and focused on our kids but we did find time to have "us" time and it has been great and much needed. Here in FL we are in "season" and in the restaurant biz that means long hours and lots of time away from home so the little time we have together has to be well spent :)
I did find time today while Hubby was checking in with work to do part two of my Day 7 work. My Non-biblical study was in the Section about Causes of Autism. This is a struggle for me because parts of what studies have shown I agree with but other parts I find kind of crazy theories and of course this book I am reading was published in 2005 so it addresses the concerns about Vaccinations causing Autism...I have not agreed with this from the very beginning and I know this will be an issue for some but this has just been my opinion and recent studies have backed me in this but I know for a long time this has been a serious debate :( Here are the factors of causation I do agree with:
1. The Brain Component: There is obviously something different about how a Child with ASD thinks and that is directly related to how their brain works. Research shows there is "faulty" wiring in the ASD Child's brain, either too much connectivity causing confusion in the brain or to little connectivity causing gaps in the brain functions.
2. The Genetic Component: This section talked about were science is on their research of the gene component mostly. I guess they have identified 6 possible genes related to ASD and they would have to come together in a certain way to develop into a child with ASD. I thought this was interesting "According to information at the Yale Child Study Center, research has shown that if you have a given birth to a child with an ASD, there is a one-in-twenty chance of giving birth to another child with an ASD. This number may even be underestimated because many parents stop having children after having one child with an ASD. Many parents of children with ASDs report there is a family history of ASDs or related disorders such as depression, obsessive-compulsive disorder, and/or schizophrenia. Other parents report cases of an odd uncle or antisocial grandmother. Because ASDs were defined differently years ago, it's possible that there were family members who had an ASD or autistic tendencies but were either misdiagnosed or never diagnosed at all."
I found most of that paragraph relateable. I often say that I am very glad I got pregnant with our second son when I did because I never would have had another if I had waited even 6 months longer to get pregnant. It was about 5 months into my pregnancy that our Son's tantrums started and we chocked it up to the good old terrible twos at the time but still even then I said if I had known this is what terrible twos meant I never would have had another. I love Peanut and on the rough days he is my little Angel from God sent here to give me kisses and let me know everything is going to be all right and that is why I think I got pregnant when I did because Peanut was meant to be in our lives. The other part of this paragraph I found very relateable was the end about the history in these families with Children with ASD...I do not want to offend or reveal too much about family members who can not speak for themselves but I can say that pretty much every disorder mentioned in that paragraph in found in either my family tree or my husband's family tree, including the odd, antisocial family member that was not properly diagnosed. My Husband is also the odd child that was not properly diagnosed. We think he probably had ADHD but at the time the Doc told my Mother-in-law to get him a fish tank to cure his hyper activity...not sure what the Doc was thinking but I guess that is all he knew to tell her at the time.
3. The Environmental Component: She had separate sections for immunizations and pregnancy components listed but I think they are all part of the environmental component. I definitely agree there is some kind of outside component that collides with the genetic predisposition but I have yet to figure out what that is for my own son let alone make my theory known for other parents. I have had thoughts of the traumatic birth and last couple weeks of my pregnancy my Son endured may have something to do with it but I can't say for sure. I was in labor for a couple weeks and because of my high tolerance for pain they didn't believe me until they hooked me up to the monitors and saw the contractions on paper. I am sure that was traumatic for him and his heart rate was high and they kept blaming me for being dehydrated so they pumped me full of fluids trying to get his heart rate down but it wasn't going down because I was perfectly hydrated, obviously something was going on with him. Finally the last of trauma at birth was the emergency c-section because when they broke my water his heart rate went from the high 180s to the 50s. It was scary for me and I can only imagine the stress his little body went through. There were no signs of issues with him at the time so we all rejoiced in a healthy baby...not sure if it really has anything to do with his issues but it has often crossed my mind.
4. The Immune System Component: This was a new one for me. I had not read this before but I found it interesting. This factor is from evidence of a UC Davis Lab did studies on the immune cells os typical children and ASD children dn found that they respond differently. ASD children have lower levels of cytokines which help mediate the immune response and they can effect behaviors and mood. She ended the paragraph with further research is being conducted and since this book is a few years old there maybe more info out there now. I will have to do some research on that and let you know :)
The rest of the section was about different statistics of ASD:
Ratio for Boys to Girls with ASD 4:1
Ratio for Boys to Girls with High Functioning ASD or Asperger's is 15:1
Decades ago only 1 in 10,000 children had Autism and now they say 1 in 150 children have Autism. There is much speculation over this increase but I just think that we have improved out diagnostic tools for this disorder and we have also opened up the "spectrum" to include more kids with similar symptoms. I don't think there is an epidemic like they make it look, I think that we are just more educated about and aware of Autism than we used to be. Maybe that is naive of me to think but it is my opinion.
I did find time today while Hubby was checking in with work to do part two of my Day 7 work. My Non-biblical study was in the Section about Causes of Autism. This is a struggle for me because parts of what studies have shown I agree with but other parts I find kind of crazy theories and of course this book I am reading was published in 2005 so it addresses the concerns about Vaccinations causing Autism...I have not agreed with this from the very beginning and I know this will be an issue for some but this has just been my opinion and recent studies have backed me in this but I know for a long time this has been a serious debate :( Here are the factors of causation I do agree with:
1. The Brain Component: There is obviously something different about how a Child with ASD thinks and that is directly related to how their brain works. Research shows there is "faulty" wiring in the ASD Child's brain, either too much connectivity causing confusion in the brain or to little connectivity causing gaps in the brain functions.
2. The Genetic Component: This section talked about were science is on their research of the gene component mostly. I guess they have identified 6 possible genes related to ASD and they would have to come together in a certain way to develop into a child with ASD. I thought this was interesting "According to information at the Yale Child Study Center, research has shown that if you have a given birth to a child with an ASD, there is a one-in-twenty chance of giving birth to another child with an ASD. This number may even be underestimated because many parents stop having children after having one child with an ASD. Many parents of children with ASDs report there is a family history of ASDs or related disorders such as depression, obsessive-compulsive disorder, and/or schizophrenia. Other parents report cases of an odd uncle or antisocial grandmother. Because ASDs were defined differently years ago, it's possible that there were family members who had an ASD or autistic tendencies but were either misdiagnosed or never diagnosed at all."
I found most of that paragraph relateable. I often say that I am very glad I got pregnant with our second son when I did because I never would have had another if I had waited even 6 months longer to get pregnant. It was about 5 months into my pregnancy that our Son's tantrums started and we chocked it up to the good old terrible twos at the time but still even then I said if I had known this is what terrible twos meant I never would have had another. I love Peanut and on the rough days he is my little Angel from God sent here to give me kisses and let me know everything is going to be all right and that is why I think I got pregnant when I did because Peanut was meant to be in our lives. The other part of this paragraph I found very relateable was the end about the history in these families with Children with ASD...I do not want to offend or reveal too much about family members who can not speak for themselves but I can say that pretty much every disorder mentioned in that paragraph in found in either my family tree or my husband's family tree, including the odd, antisocial family member that was not properly diagnosed. My Husband is also the odd child that was not properly diagnosed. We think he probably had ADHD but at the time the Doc told my Mother-in-law to get him a fish tank to cure his hyper activity...not sure what the Doc was thinking but I guess that is all he knew to tell her at the time.
3. The Environmental Component: She had separate sections for immunizations and pregnancy components listed but I think they are all part of the environmental component. I definitely agree there is some kind of outside component that collides with the genetic predisposition but I have yet to figure out what that is for my own son let alone make my theory known for other parents. I have had thoughts of the traumatic birth and last couple weeks of my pregnancy my Son endured may have something to do with it but I can't say for sure. I was in labor for a couple weeks and because of my high tolerance for pain they didn't believe me until they hooked me up to the monitors and saw the contractions on paper. I am sure that was traumatic for him and his heart rate was high and they kept blaming me for being dehydrated so they pumped me full of fluids trying to get his heart rate down but it wasn't going down because I was perfectly hydrated, obviously something was going on with him. Finally the last of trauma at birth was the emergency c-section because when they broke my water his heart rate went from the high 180s to the 50s. It was scary for me and I can only imagine the stress his little body went through. There were no signs of issues with him at the time so we all rejoiced in a healthy baby...not sure if it really has anything to do with his issues but it has often crossed my mind.
4. The Immune System Component: This was a new one for me. I had not read this before but I found it interesting. This factor is from evidence of a UC Davis Lab did studies on the immune cells os typical children and ASD children dn found that they respond differently. ASD children have lower levels of cytokines which help mediate the immune response and they can effect behaviors and mood. She ended the paragraph with further research is being conducted and since this book is a few years old there maybe more info out there now. I will have to do some research on that and let you know :)
The rest of the section was about different statistics of ASD:
Ratio for Boys to Girls with ASD 4:1
Ratio for Boys to Girls with High Functioning ASD or Asperger's is 15:1
Decades ago only 1 in 10,000 children had Autism and now they say 1 in 150 children have Autism. There is much speculation over this increase but I just think that we have improved out diagnostic tools for this disorder and we have also opened up the "spectrum" to include more kids with similar symptoms. I don't think there is an epidemic like they make it look, I think that we are just more educated about and aware of Autism than we used to be. Maybe that is naive of me to think but it is my opinion.
Day 7-Part 1 Amazing Love and Longing
"I pray that out of His glorious riches He may strengthen you with power through His Spirit in your inner being. So that Christ may dwell in your hearts through faith. And I pray that you being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge, that you may be filled to the measure of all the fullness of God." Ephesians 3:16-19
As I have said many times before I find great strength and power from music and I listen to it all the time. Especially Christian music. It is a powerful influence in my life and always has been.
This song actually started playing when I was reading Day 7's devotional and it was one of those divine moments where it all came together in the right time :)
"Autism came into our lives. God expects to be glorified with our testimony. It is an awesome thought to think God thinks so highly of our parenting skills! He knows we could handle this with His help...or He never would have allowed autism in." (Medina 29)
Having a Child with ASD teaches you so much about unconditional love. I think being a parent in general teaches you unconditional love but when you have a child with special needs the unconditional love does not always feel like it is being returned. We know deep down inside that our child loves and appreciates us but the outward expression of it is lost to us. I think it is a great example of the love between Christ and his lost sheep. He never stops loving us, no matter what we have done or how little we show our love for him. He loves us deeper and stronger than we could ever imagine and he only longs for us to love and long for him like he does for us. It is an amazing picture of love!
"Our children have taught us to love more deeply. Our children are teaching us to love like Christ loves. Our children are teaching us to never give up. Our children are teaching us love does indeed surpass knowledge." (Medina 30)
When I was trying to define this love for myself in my time of prayer, I was reminded of how love was defined by the pastor who married my Husband and I. It is "Agape" love. The Greeks have different words for love (sexual love, friendship love and Christ-like love) used in the bible but when translated to English we only have one word to describe all types of love. When we strive to love like Christ loves us we are looking for "Agape" love.
When googling the best definition of Agape love this is what I found...
"Agape love - unconditional love that is always giving and impossible to take or be a taker. It devotes total commitment to seek your highest best no matter how anyone may respond. This form of love is totally selfless and does not change whether the love given is returned or not. This is the original and only true form of love."
"Agape love is seeing the answer and sharing that with whoever is seeing or experiencing the problem.
Agape love is never judgmental and is eternally patient with any thing that must be learned.
Agape love is totally without demands or requirements.
Agape love is total truth in that it does not change, no matter what appears to change around it.
Agape love knows not of time since time does not exist in heaven.
Agape love is unconditional forgiveness for any event because agape love transcends the concept of needing forgiveness in that it knows we are simply misguided and therefore our actions are not held against us in the first place."
(both passages are from http://www.ezilon.com/articles/articles/7675/1/God-is-Agape-Love)
These descriptions better describe my love for my children and the love I feel from Christ then I ever could. It is a comfort everyday to know I am loved that unconditionally and I only hope that even with the madness of our lives my little Monkey and Peanut know I love them that much too!
As I have said many times before I find great strength and power from music and I listen to it all the time. Especially Christian music. It is a powerful influence in my life and always has been.
This song actually started playing when I was reading Day 7's devotional and it was one of those divine moments where it all came together in the right time :)
"Autism came into our lives. God expects to be glorified with our testimony. It is an awesome thought to think God thinks so highly of our parenting skills! He knows we could handle this with His help...or He never would have allowed autism in." (Medina 29)
Having a Child with ASD teaches you so much about unconditional love. I think being a parent in general teaches you unconditional love but when you have a child with special needs the unconditional love does not always feel like it is being returned. We know deep down inside that our child loves and appreciates us but the outward expression of it is lost to us. I think it is a great example of the love between Christ and his lost sheep. He never stops loving us, no matter what we have done or how little we show our love for him. He loves us deeper and stronger than we could ever imagine and he only longs for us to love and long for him like he does for us. It is an amazing picture of love!
"Our children have taught us to love more deeply. Our children are teaching us to love like Christ loves. Our children are teaching us to never give up. Our children are teaching us love does indeed surpass knowledge." (Medina 30)
When I was trying to define this love for myself in my time of prayer, I was reminded of how love was defined by the pastor who married my Husband and I. It is "Agape" love. The Greeks have different words for love (sexual love, friendship love and Christ-like love) used in the bible but when translated to English we only have one word to describe all types of love. When we strive to love like Christ loves us we are looking for "Agape" love.
When googling the best definition of Agape love this is what I found...
"Agape love - unconditional love that is always giving and impossible to take or be a taker. It devotes total commitment to seek your highest best no matter how anyone may respond. This form of love is totally selfless and does not change whether the love given is returned or not. This is the original and only true form of love."
"Agape love is seeing the answer and sharing that with whoever is seeing or experiencing the problem.
Agape love is never judgmental and is eternally patient with any thing that must be learned.
Agape love is totally without demands or requirements.
Agape love is total truth in that it does not change, no matter what appears to change around it.
Agape love knows not of time since time does not exist in heaven.
Agape love is unconditional forgiveness for any event because agape love transcends the concept of needing forgiveness in that it knows we are simply misguided and therefore our actions are not held against us in the first place."
(both passages are from http://www.ezilon.com/articles/articles/7675/1/God-is-Agape-Love)
These descriptions better describe my love for my children and the love I feel from Christ then I ever could. It is a comfort everyday to know I am loved that unconditionally and I only hope that even with the madness of our lives my little Monkey and Peanut know I love them that much too!
Wednesday, March 2, 2011
Day 6-Part 2 Understanding
I promise I will get caught up soon on these blogs. Every time I think I am going to have a minute to catch up something happens...like puke all over my dining room last night...YUCK! I am the only one in the house that can clean it up too because my husband would only add to the mess if he had to clean it up...what would he do without me? :)
My non-biblical study for Day 6 was on understanding behaviors. I skimmed through the questions and only read the ones that pertained to me...I'm a bit selfish at times but I was actually really curious about this section because no one has ever explained to me the reasons for these behaviors or what they mean. I know my son lacks social skills but specifics I didn't know until now. He does not understand non-verbal emotions. When I cry because I am silent, he never notices. I was reminded of that just a few weeks ago when I was upset about something, God only knows what, I cry over everything, probably a movie, probably Toy Story 3, gosh the beginning of that movie when they show the home movies of Andy...gets me every time! Ok, way off topic! Both boys were in the room and Peanut comes over and crawls in my lap and wipes my tear away and says "you cry mama"...I can not remember a single time my Monkey has noticed me crying and said something, honestly and I have been right in front of his face crying because I am struggling to get him to stay on a time out or frustrated by one of his tantrums. The book explains that ASD children see the face in pieces rather than as a whole face so the subtle things like a raised eyebrow or tearful eye is not seen if they are focused on the mouth. It is like they compartmentalize the facial features and they don't see the emotion, just the body part. There were also a lot of questions about the over sensitivity and insensitivity and I kind of just skimmed over those because I have done a ton of research on that I have almost read front to back the book The Out of Synch Child. But the section that I really liked that helped me was seeing it in black and white a description of my son's social impairments. This has been an area where I have often felt like I have to defend my Son's Diagnosis, even to some professionals, like I want my Son to be Autistic!?! They look at him and think, he is so friendly and outgoing and affectionate and really he is over the top with it. He is only 4 so people think it is so cute but when he is still behaving like that at 10 will they think it is still cute probably not...here was Karen's description:
"The 'active but odd' group was first described in 1979 (since then, Dr. Wing has tried to come up with a name that sounds better). This group tends to be more assertive in social situations-sometimes to the point of being aggressive. You saw this in the case study of Michael, the boy with Asperger's, who became aggressive in the swimming pool and almost drowned another child. His Mother explained that his intention was to hug the other child, but his hug was inappropriately tight. Children in this group will also initiate verbal interactions, but often their interactions involve a one way desertion on their favorite topic with no concern for the other person's interests. Again, Michael would often alienate other children by lecturing them in a pedantic tone about Monarch butterflies."
And lastly the question I found helpful was the explanation of the imaginative play issues. My son has some imaginative play and recently seem to be developing more but this book kind of explained that to me. I was thinking he was getting better but really he is still not really "pretending" because he is only mimicking what he sees on shows and from other kids. That is not "spontaneous" play :( Oh well, they did say with proper therapies they can develop some imaginative play but most likely it will be more advanced forms of my Son's current style of imaginative play.
I am really loving this book, it is teaching me so much and helping me to better explain to others why my Son is doing the things he does. :)
My non-biblical study for Day 6 was on understanding behaviors. I skimmed through the questions and only read the ones that pertained to me...I'm a bit selfish at times but I was actually really curious about this section because no one has ever explained to me the reasons for these behaviors or what they mean. I know my son lacks social skills but specifics I didn't know until now. He does not understand non-verbal emotions. When I cry because I am silent, he never notices. I was reminded of that just a few weeks ago when I was upset about something, God only knows what, I cry over everything, probably a movie, probably Toy Story 3, gosh the beginning of that movie when they show the home movies of Andy...gets me every time! Ok, way off topic! Both boys were in the room and Peanut comes over and crawls in my lap and wipes my tear away and says "you cry mama"...I can not remember a single time my Monkey has noticed me crying and said something, honestly and I have been right in front of his face crying because I am struggling to get him to stay on a time out or frustrated by one of his tantrums. The book explains that ASD children see the face in pieces rather than as a whole face so the subtle things like a raised eyebrow or tearful eye is not seen if they are focused on the mouth. It is like they compartmentalize the facial features and they don't see the emotion, just the body part. There were also a lot of questions about the over sensitivity and insensitivity and I kind of just skimmed over those because I have done a ton of research on that I have almost read front to back the book The Out of Synch Child. But the section that I really liked that helped me was seeing it in black and white a description of my son's social impairments. This has been an area where I have often felt like I have to defend my Son's Diagnosis, even to some professionals, like I want my Son to be Autistic!?! They look at him and think, he is so friendly and outgoing and affectionate and really he is over the top with it. He is only 4 so people think it is so cute but when he is still behaving like that at 10 will they think it is still cute probably not...here was Karen's description:
"The 'active but odd' group was first described in 1979 (since then, Dr. Wing has tried to come up with a name that sounds better). This group tends to be more assertive in social situations-sometimes to the point of being aggressive. You saw this in the case study of Michael, the boy with Asperger's, who became aggressive in the swimming pool and almost drowned another child. His Mother explained that his intention was to hug the other child, but his hug was inappropriately tight. Children in this group will also initiate verbal interactions, but often their interactions involve a one way desertion on their favorite topic with no concern for the other person's interests. Again, Michael would often alienate other children by lecturing them in a pedantic tone about Monarch butterflies."
And lastly the question I found helpful was the explanation of the imaginative play issues. My son has some imaginative play and recently seem to be developing more but this book kind of explained that to me. I was thinking he was getting better but really he is still not really "pretending" because he is only mimicking what he sees on shows and from other kids. That is not "spontaneous" play :( Oh well, they did say with proper therapies they can develop some imaginative play but most likely it will be more advanced forms of my Son's current style of imaginative play.
I am really loving this book, it is teaching me so much and helping me to better explain to others why my Son is doing the things he does. :)
Tuesday, March 1, 2011
Day 6-Part 1...Peace Again
I know I wrote a lot about finding peace during my first two days of this challenge and that has not changed but today's devotional is bringing that back again.
"The mind of sinful man is death, but mind controlled by the Spirit is for life and peace." Romans 8:6
"A sinful mind doesn't have to mean a mind filled with pornography, addiction or adultry. A sinful mind can be a mind that has given up hope or a mind that is dwelling on negative thoughts. We must get on our knees and pray for the Holy Spirit to fill us. Pray for peace to be restored. God does not tear our mind down with negative thoughts, satan does." (Medina 27)
Kathy talks about how difficult it has been to find peace in a house with an Autistic Child and I have had times where I felt the same way. There have been many days I have locked myself in the bathroom to cry because I have given up and don't know what else to do...pleading with God to make the tantrums stop! I truely have only found peace when Monkey is sleeping and even then I am going over all the events of the day in my head and cleaning the house rather then relaxing. I love and adore my son but he all by himself is more than a full time job and when you have a husband that works 12+ hours a day and another child to care for, life can be rough. Negative thoughts creep in and a glass of wine sounds like the perfect anicdote to my rough day but since starting this challenge I have definately found much more comfort in the word then my glass of wine ever gave me. Filling my mind with scripture every night has given me so much peace and I am so much more relaxed through out the day. The calm scripture brings last much longer then anything I have done in the past to "heal" (gym, break time, wine :))
"The mind of sinful man is death, but mind controlled by the Spirit is for life and peace." Romans 8:6
"A sinful mind doesn't have to mean a mind filled with pornography, addiction or adultry. A sinful mind can be a mind that has given up hope or a mind that is dwelling on negative thoughts. We must get on our knees and pray for the Holy Spirit to fill us. Pray for peace to be restored. God does not tear our mind down with negative thoughts, satan does." (Medina 27)
Kathy talks about how difficult it has been to find peace in a house with an Autistic Child and I have had times where I felt the same way. There have been many days I have locked myself in the bathroom to cry because I have given up and don't know what else to do...pleading with God to make the tantrums stop! I truely have only found peace when Monkey is sleeping and even then I am going over all the events of the day in my head and cleaning the house rather then relaxing. I love and adore my son but he all by himself is more than a full time job and when you have a husband that works 12+ hours a day and another child to care for, life can be rough. Negative thoughts creep in and a glass of wine sounds like the perfect anicdote to my rough day but since starting this challenge I have definately found much more comfort in the word then my glass of wine ever gave me. Filling my mind with scripture every night has given me so much peace and I am so much more relaxed through out the day. The calm scripture brings last much longer then anything I have done in the past to "heal" (gym, break time, wine :))
Day 5, Part 2- Diagnosis Process
Sorry this is coming in the morning rather than last night. I feel really bad, like I am in school again and I am falling behind LOL It is good though because this is the kind of pressure I need to continue this. It is so easy in my chaotic life to just give up on something when it becomes too time consuming but this has been healing for me and very much a rewarding experience, so I am determined to keep going. Yesterday, My Husband gave me an afternoon to myself and I decided to spend some time with girlfriends laying around the pool. I can not say the last time I did that and it was nice. And then as if that was not relaxing enough the girls spoiled me with making dinner for me! Anyway, I am not sure what it was but when I got home, I had the worst tummy ache...my guess is dehydration, not drinking enough water yesterday and then laying out in the warm but it was pretty uncomfortable so as soon as the kids were sleeping I was laying on my bed not moving for the rest of the night. I still feel kind of yuck this morning but I feel better enough to move around.
I am slowly working my way through The Autism Sourcebook and it is a big book but the way she presents the material is very user friendly. It presents a common question and then she provides the answer and all the questions are divided in to sections and then sub-sections. I am really quite enjoying it.
My Non-Biblical Study for Day 5 was a subsection of the "Diagnosis" section called "Who diagnosis my Child? Going beyond your pediatrician" It was all about the different modes of diagnosis you can take if you have suspicions that something needs to be looked at with your child. I think mine just fell into my lap, I really didn't have a choice...but I will go over what I have gathered from talking to other Moms; what I have been through so far and also what the book had to say.
My "Diagnosis Process" technically started off rocky. I had my concerns about my son and I voiced them to the pediatrician every time we went to the Dr but usually it was just one symptom here or there. Like his lack of talking or his fear of the vacuum or fear of stickers. But I never put them all out there in one appt so maybe it is my fault that no red flags were raised but I think I just assumed that he was making notes when I raised my concerns but I kind of think now he probably wasn't and if he was he was not referring back at each subsequent visit. It wasn't until we saw a new pediatrician for the first time after we moved that this pediatrician saw one of his relentless tantrums and inability to discipline that concerns were raised quickly and the Doc was pretty persistent that I have him evaluated sooner than later. So, I called the school district and they said they could not evaluate him until Aug (this was in May 2010 that I called) because of summer break. So then I sat there thinking now what? I can't spend all summer not know what to do and wondering, I will be a crazy person! SO my amazing sister found me a non-profit organization here that does these evaluations for free or a very small co-pay. They have interning therapists do the evaluations and then consult with an seasoned therapist to get a proper diagnosis and if needed the seasoned Therapist will come in to evaluate as well. Our diagnosis process with them was three part. First they sent me a packet of papers called an Intake Packet (I think). It was basically 30+ pages of forms for me to fill out about EVERYTHING! Every milestone, every behavior, every cold, flu, everything you can think of. I think the thing that caught me off guard was some of the questions felt like they were just for my Son...things I had not thought about as symptoms until then. They asked about the OCD behaviors that I thought were so cute and funny at the time. His fear of basic grooming tasks, like brushing teeth, cutting nails, hair cuts. It was crazy to me how many of these things I never even thought about were being asked and then I started to freak! What does all this mean? I filled out this packet before our first appt and I sent it back to them for them to look over and then they called to schedule his first evaluation. The first appt was going over some of the red flags that were in my paperwork, observing Monkey while I talked to the therapist and then handing me another smaller stack of questionnaires to fill out before the next appt. The smaller stack was more detailed, yes or no questions and scale 1-5 type questions. Those were a little less scary because I just answered the questions and didn't really know what the results meant because there were formulas for calculations and they were a little more complex so I just filled them out and brought them back to his next appt. The second appt was them observing him alone and interacting with him without me in the room. After that appt the interning therapist meets with her superior and goes over her notes and the questionnaires I filled out. From there they call us back to go over the results and discuss the next step. At the final appt they diagnosed him with Sensory Processing Disorder and falling somewhere on the Autism Spectrum they were just not entirely clear where on the spectrum he fell. He is so high functioning and he is ok with communicating now but his social skills were obviously delayed. They referred us to a Neurologist and to a therapy place to begin his OT for the Sensory issues. So while we were working out the kinks for getting these services in place (insurance issues and finding a Pediatrician we liked) August was upon us and we were ready for our eval with the School District. It was frustrating because I guess they misunderstood what I was there to have evaluated because the check list they had for him included everything except behaviors checked off...figures and I don't know if they were not equipped to evaluate him for that that day or what but they didn't. They were evaluating his intellectual level and he is within normal range for his intellectual level so they didn't do anything for him at that point. Now that we have received the medical backing of a neurologist it looks like we will be going through another evaluation with the School District to get him set up with proper therapies to prepare him for Kindergarten. That evaluation is in just a couple weeks. I will give you the info on that evaluation after we are through it :)
The Autism Sourcebook asked a lot of good questions that I have not thought of before. One that struck me is they say in an ideal situation you should have your child evaluated and diagnosed by both a specialist in ASD and the School. It is the best way to get a well rounded look at your child's needs. Another thing brought up in the book that I had not thought about, because our state covers nearly all early intervention services through the school district, is that for different ages you need to seek state help in different places for diagnosis. "From birth to age three, your child can be evaluated by a state agency through their Early Intervention program-at no cost to you. Each state has a lead agency in charge of early intervention services for infants and toddlers with special need. They will provide your with a list of approved evaluation sites where you can bring your child. In some cases, the evaluators will come to your home to administer the evaluations. If your child is between the ages of three and five years old, the state agency will still pay for your child's evaluations, which will be administer by the preschool evaluators. When your child turns five, he or she can be evaluated by the school district-again at not cost to you." I thought that was good info to share because I don't think many people realize all this diagnosis is required to be covered by the state. My Husband and I are starting our law course this week so I am hoping that will have even more info that is helpful to others. I know the financials are always one of the scariest parts of all this because those of us that are middle class America in this economy don't often have the extra money to pay for the "best", so any help we can get is great!
I am slowly working my way through The Autism Sourcebook and it is a big book but the way she presents the material is very user friendly. It presents a common question and then she provides the answer and all the questions are divided in to sections and then sub-sections. I am really quite enjoying it.
My Non-Biblical Study for Day 5 was a subsection of the "Diagnosis" section called "Who diagnosis my Child? Going beyond your pediatrician" It was all about the different modes of diagnosis you can take if you have suspicions that something needs to be looked at with your child. I think mine just fell into my lap, I really didn't have a choice...but I will go over what I have gathered from talking to other Moms; what I have been through so far and also what the book had to say.
My "Diagnosis Process" technically started off rocky. I had my concerns about my son and I voiced them to the pediatrician every time we went to the Dr but usually it was just one symptom here or there. Like his lack of talking or his fear of the vacuum or fear of stickers. But I never put them all out there in one appt so maybe it is my fault that no red flags were raised but I think I just assumed that he was making notes when I raised my concerns but I kind of think now he probably wasn't and if he was he was not referring back at each subsequent visit. It wasn't until we saw a new pediatrician for the first time after we moved that this pediatrician saw one of his relentless tantrums and inability to discipline that concerns were raised quickly and the Doc was pretty persistent that I have him evaluated sooner than later. So, I called the school district and they said they could not evaluate him until Aug (this was in May 2010 that I called) because of summer break. So then I sat there thinking now what? I can't spend all summer not know what to do and wondering, I will be a crazy person! SO my amazing sister found me a non-profit organization here that does these evaluations for free or a very small co-pay. They have interning therapists do the evaluations and then consult with an seasoned therapist to get a proper diagnosis and if needed the seasoned Therapist will come in to evaluate as well. Our diagnosis process with them was three part. First they sent me a packet of papers called an Intake Packet (I think). It was basically 30+ pages of forms for me to fill out about EVERYTHING! Every milestone, every behavior, every cold, flu, everything you can think of. I think the thing that caught me off guard was some of the questions felt like they were just for my Son...things I had not thought about as symptoms until then. They asked about the OCD behaviors that I thought were so cute and funny at the time. His fear of basic grooming tasks, like brushing teeth, cutting nails, hair cuts. It was crazy to me how many of these things I never even thought about were being asked and then I started to freak! What does all this mean? I filled out this packet before our first appt and I sent it back to them for them to look over and then they called to schedule his first evaluation. The first appt was going over some of the red flags that were in my paperwork, observing Monkey while I talked to the therapist and then handing me another smaller stack of questionnaires to fill out before the next appt. The smaller stack was more detailed, yes or no questions and scale 1-5 type questions. Those were a little less scary because I just answered the questions and didn't really know what the results meant because there were formulas for calculations and they were a little more complex so I just filled them out and brought them back to his next appt. The second appt was them observing him alone and interacting with him without me in the room. After that appt the interning therapist meets with her superior and goes over her notes and the questionnaires I filled out. From there they call us back to go over the results and discuss the next step. At the final appt they diagnosed him with Sensory Processing Disorder and falling somewhere on the Autism Spectrum they were just not entirely clear where on the spectrum he fell. He is so high functioning and he is ok with communicating now but his social skills were obviously delayed. They referred us to a Neurologist and to a therapy place to begin his OT for the Sensory issues. So while we were working out the kinks for getting these services in place (insurance issues and finding a Pediatrician we liked) August was upon us and we were ready for our eval with the School District. It was frustrating because I guess they misunderstood what I was there to have evaluated because the check list they had for him included everything except behaviors checked off...figures and I don't know if they were not equipped to evaluate him for that that day or what but they didn't. They were evaluating his intellectual level and he is within normal range for his intellectual level so they didn't do anything for him at that point. Now that we have received the medical backing of a neurologist it looks like we will be going through another evaluation with the School District to get him set up with proper therapies to prepare him for Kindergarten. That evaluation is in just a couple weeks. I will give you the info on that evaluation after we are through it :)
The Autism Sourcebook asked a lot of good questions that I have not thought of before. One that struck me is they say in an ideal situation you should have your child evaluated and diagnosed by both a specialist in ASD and the School. It is the best way to get a well rounded look at your child's needs. Another thing brought up in the book that I had not thought about, because our state covers nearly all early intervention services through the school district, is that for different ages you need to seek state help in different places for diagnosis. "From birth to age three, your child can be evaluated by a state agency through their Early Intervention program-at no cost to you. Each state has a lead agency in charge of early intervention services for infants and toddlers with special need. They will provide your with a list of approved evaluation sites where you can bring your child. In some cases, the evaluators will come to your home to administer the evaluations. If your child is between the ages of three and five years old, the state agency will still pay for your child's evaluations, which will be administer by the preschool evaluators. When your child turns five, he or she can be evaluated by the school district-again at not cost to you." I thought that was good info to share because I don't think many people realize all this diagnosis is required to be covered by the state. My Husband and I are starting our law course this week so I am hoping that will have even more info that is helpful to others. I know the financials are always one of the scariest parts of all this because those of us that are middle class America in this economy don't often have the extra money to pay for the "best", so any help we can get is great!
Monday, February 28, 2011
Day 5 Part One- Turning to Jesus
"He sent me to bind up the broken hearted." Isaiah 61:1
That was all there was to the biblical reference in the last night's devotional...and I didn't really have any new thoughts in response to it but Kathy said something that struck a cord with me. Jesus was sent here to fix our broken hearts so we MUST turn to him in times of heartbreak rather than wasting our energy fighting the enemy...I truely believe in the power of music for reflection, devotion and healing. This is one of my faves and it was the first song I thought of when I read last night's devotional.
Tune in later for my Non-Biblical Study reflections. I decided my Blogs were getting too long so I am dividing them into two blogs a day rather than just one long one. :)
That was all there was to the biblical reference in the last night's devotional...and I didn't really have any new thoughts in response to it but Kathy said something that struck a cord with me. Jesus was sent here to fix our broken hearts so we MUST turn to him in times of heartbreak rather than wasting our energy fighting the enemy...I truely believe in the power of music for reflection, devotion and healing. This is one of my faves and it was the first song I thought of when I read last night's devotional.
Tune in later for my Non-Biblical Study reflections. I decided my Blogs were getting too long so I am dividing them into two blogs a day rather than just one long one. :)
Sunday, February 27, 2011
Day 4-Part 2, Still Sleepy
I am still exhausted and I am pretty certain that I did as little as possible today... Dishes, not done, only one load of laundry done and the kids were not in bed until almost 10pm...UGH!
Yesterday was an OK day but the getting up early and going to bed late was starting to get to me and of course Peanut had to go and make it worse by waking up extra early this morning :)
Last Night's Devotional was about not giving up...The Bible reference was Luke 18:1-8. I am too tired to write it out, it is a long one but I hope you look it up and read it. I admittedly have given up on discipline for my Monkey. It seemed as though nothing works and then I read when you have a "normal" child in the home with your Special needs child you have to enforce typical discipline so one does not feel favored over the other...UGH! is all I have to say to that. Disciplining a child with special needs honestly feels like banging your head against a brick wall. I had all together given up until my Mom sent me an email from Amazon recommending a book about disciplining a child with ASD (Positive Discipline for Children with Special Needs: Raising and Teaching All Children to Become Resilient, Responsible, and Respectful by Jane Nelsen)...WOW...exactly what I am looking for. I have yet to get the book but it gave me new hope and I am hoping it will be discipline that works for both kids so peanut never thinks I favor Monkey over him and we can have some consistency in the house.
Honestly, since Monkey was diagnosed one of my biggest fear has been that Peanut would feel I am favoring his brother over him when really it is just that they respond differently because of Monkey being different. My biggest fear has been realized in a way I never thought...Peanut is picking up some of Monkey's behaviors just because he looks up to Monkey. It is obvious that Peanut does not have the delays that Monkey had but Peanut is only 2 and he is in the developmental stage where he is taking his ques from his big brother and that is making things difficult for me lately. I struggle constantly and this book Amazon Recommended has given me new hope. I went to one book store today and they did not have the book so I plan to check all the stores before ordering it online. Tomorrow Hubby is off and I am getting a kid free day to do whatever I want and one of the things I plan to do is hunt for this book :)
Again, God saw what was needed in my life and gave me the devotional I needed for this time...He is so good to me and I am excited for the future...
I did not get a non-biblical study in last night I was too tired and started to fall asleep so I will make up for that tomorrow night, PROMISE! Hubby plans to do the Legal Course with me since he is off and I will have lots to write about then!
Thank you to all the new followers of this blog! I hope I do not disappoint!
Yesterday was an OK day but the getting up early and going to bed late was starting to get to me and of course Peanut had to go and make it worse by waking up extra early this morning :)
Last Night's Devotional was about not giving up...The Bible reference was Luke 18:1-8. I am too tired to write it out, it is a long one but I hope you look it up and read it. I admittedly have given up on discipline for my Monkey. It seemed as though nothing works and then I read when you have a "normal" child in the home with your Special needs child you have to enforce typical discipline so one does not feel favored over the other...UGH! is all I have to say to that. Disciplining a child with special needs honestly feels like banging your head against a brick wall. I had all together given up until my Mom sent me an email from Amazon recommending a book about disciplining a child with ASD (Positive Discipline for Children with Special Needs: Raising and Teaching All Children to Become Resilient, Responsible, and Respectful by Jane Nelsen)...WOW...exactly what I am looking for. I have yet to get the book but it gave me new hope and I am hoping it will be discipline that works for both kids so peanut never thinks I favor Monkey over him and we can have some consistency in the house.
Honestly, since Monkey was diagnosed one of my biggest fear has been that Peanut would feel I am favoring his brother over him when really it is just that they respond differently because of Monkey being different. My biggest fear has been realized in a way I never thought...Peanut is picking up some of Monkey's behaviors just because he looks up to Monkey. It is obvious that Peanut does not have the delays that Monkey had but Peanut is only 2 and he is in the developmental stage where he is taking his ques from his big brother and that is making things difficult for me lately. I struggle constantly and this book Amazon Recommended has given me new hope. I went to one book store today and they did not have the book so I plan to check all the stores before ordering it online. Tomorrow Hubby is off and I am getting a kid free day to do whatever I want and one of the things I plan to do is hunt for this book :)
Again, God saw what was needed in my life and gave me the devotional I needed for this time...He is so good to me and I am excited for the future...
I did not get a non-biblical study in last night I was too tired and started to fall asleep so I will make up for that tomorrow night, PROMISE! Hubby plans to do the Legal Course with me since he is off and I will have lots to write about then!
Thank you to all the new followers of this blog! I hope I do not disappoint!
Day 4- Part 1, SLEEPY
Not Mornings like Mine today!
Tinkerbell and I are looking good this morning!
Little Peanut decided he wanted to be up at 5:30AM so there went my blog time...I will be blogging during nap time...hopefully, today is Church day and that always messes with Nap Schedules so we shall see I may be both blogging and studying after the kids go to bed tonight...SO SLEEPY...
Saturday, February 26, 2011
Day 3- Back to the Beginning
We had a better day yesterday, not a great day but a better day. I did all my things on my challenge except my goal to sped time with Monkey again. He woke up yesterday and for some reason decided he wanted to play the video game console that he rarely plays and by the time he grew tired of it and finally stop playing Peanut was up from his nap. Monkey's fixations and meals were tough yesterday. He did not want to eat anything which means today will be especially difficult because it always seems that when he doesn't eat enough during the day then he doesn't sleep well at night and he woke up and crawled into my bed at about 4am so he definitely did not sleep good. Lack of sleep combined with the lack of appetite...I am in for a bumpy road today.
Last Night's devotional was on Renewing Faith after heartbreak.
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all so we fix our eyes on not what is seen, but what is unseen. For what is seen is temporary, but what is unseen is eternal." II Corinthians 4:16-18
Kathy started her thoughts with the definition of "broken" in Hebrew. "The Hebrew word for broken is shavar. This means 'to burst, break into pieces, wreck, crush, smash: tear into pieces (like a wild beast)...'" This definition is really violent but isn't that how we feel when we get a diagnosis of Autism for our child or anything life changing that we don't like. It feels like a violent storm is ripping through your heart and life.
I think the storm started for me when that Doctor tried to discipline my son in the office because he was obviously not listening to me after several attempts and my son still had no response to the Doc. What an eye opener! This is no longer an issue of poor discipline on my part but an inability to discipline at all. Then the Doc started asking some questions about his development and I knew right away what he was implying and I lost it. Started crying right there in the office and the rest is a blur. I spent the next 48 hrs making phone calls to the references he had given me and HOURS on the phone with my sister going over what her Child Psych references had to say about his symptoms. I am not sure but I think I have mentioned in the past that my sister has a bachelors in Psychology and is currently working on her Masters in Social Work, so she is better versed in all these childhood conditions than I was at the time. I think I have done more in depth looks at ASD and Sensory Processing disorder than she has now but she was my initial go to and still is when questions about medications come up and treatment options. Anyway, I think I prepared myself for the worst and I secretly relieved that I was not imagining how difficult my child is. At the time this had all happen I was trying every discipline technique that exists to man and nothing seem to be working. I was flustered and stressed and unsure of what to do next...I honestly had thoughts of calling Super Nanny LOL Plus just like most of us parents we know when something is off about our child. I just didn't realize how bad it really was. I had seen signs of something being off around age 1. After Monkey's first birthday he became intensely fearful of the vacuum. To the point that my husband would take him outside while I was vacuuming inside and even with a door and wall between us he would shake violently in fear. He took a lot to get to respond to his name now looking back at home videos but at the time he was our only child and we were constantly engaging him in activities because we had nothing but time for just him so I think that is why we didn't notice plus we didn't really know what "normal" was. The other thing I notice in the home videos is his complete quiet and lack of interest in me while I was video taping him. The other symptoms that I had been concerned about was his delayed speech. I remember a child I babysat for when I was in college that didn't speak until she was two but she did say yes and no and the occasional Mama and Dada before that. My child did not communicate other than tantrums until well after his second birthday. I was the one who spent the most time with him and he didn't say Mama until after he was 2 1/2. He also had other sensory symptoms that were kind of strange, like and intense fear of stickers...what child is afraid of stickers? I had nicknamed him "OCD Boy" because he used to line everything in the house up. I would open my pantry at times to find an entire section re-organized and lined up perfectly all labels facing out. He was playing outside one day and he took all the patio chairs and lined them up perfectly next to each other rather than around the table. And the cars and trains! Oh my, I would have parking lots of lined up cars in my living room. The symptoms I had not noticed until we started the diagnostic process was his lack of imaginative play, his fixations, the ways he interacted with his peers and his lack of expression. I had noticed that he didn't make real friends, he liked to say everyone was his "friend" and he would run up to them but then he wouldn't interact much with them and then if you asked him about a specific "friend" he typically could not tell you anything about them because he never engaged them but I didn't really see it as a red flag at the time. The imaginative play was another that I had noticed but didn't really see as a red flag. I may have been in a little denial but I also think I just didn't know. There was not enough asked by the Docs on development at his well check visits and I didn't have time to read books on development all the time. And nobody in my family wanted to scare me unnecessarily by telling me they were concerned; especially since I had made my concerns known already. I think they just wanted to comfort me rather than scare me more. I don't really remember a time since last May, when the Doc confirmed all my worst fears, that I have felt at peace and whole again, until now. My torn pieces are coming back together and it feels so good. Feels freeing. "Today's verse reminds us if we don't renew our faith, after being broken hearted, we will waste away. To be renewed inwardly means we need to privately take care of our insides. This is done by reading Scripture and praying" (Kathy Medina)
As my Non-Biblical study last night I read the first chapter of the diagnosis section of The Autism Sourcebook. It was the same checklist I have seen many times now and brief descriptions of the possible diagnoses that fall under the Spectrum. I chose to read that section of the book because I knew it would bring me back to the beginning and how I felt when this all started just like my devotional for the day did. So, I am going to share with you the list of symptoms Karen Siff Exkorn compiled for the book based on several list she has researched. Like she said in the book, this list is only to alert parents to the possible symptoms for ASD not for you to use to diagnose your child. If you do see a lot of these symptoms in your child than of course contact your doctor for further testing.
Does your two to five year old child...
not respond when you call his or her name or seem generally unresponsive?
not use his or her index finger to point to objects to indicate what he or she wants or to show you something?
have intermittent or no eye contact?
still not speak?
not speak anymore? (loss of words)
demonstrate odd or idiosyncratic speech or language-such as endlessly repeating nursery rhymes, echoing or repeating words or phrases, or making unusual sounds?
demonstrate odd or idiosyncratic behavior-such as hand flapping, finger flicking, or constant spinning?
experience emotional volatility and tantrums that are out of control?
have poor motor coordination when it comes to physical activities such as running or climbing?
fixate on objects such as ceiling fans or bright lights or parts of objects such as wheels of a toy car?
seem highly distracted or "spaced out"?
show inappropriate attachment to objects (such as always carrying around a statue or piece of string) or frequently put objects into his or her mouth?
engage in obsessive, repetitive behaviors such as opening and closing doors, turning light switches on and off, or lining up cars?
display ritualistic behaviors such as lining up books on the floor in a specific order at specific times?
engage in little or no spontaneous pretend play?
constantly play by him or herself, showing no interest in peers?
never bring or show you toys?
show no separation anxiety when you leave?
resist change and insist on sticking to specific routines or rituals?
engage in self-injurious behavior such as head banging or hand biting?
show no apparent fear of danger or pain?
not like to be hugged, cuddled, or touched?
have unanimated facial expressions and/or a monotone voice?
demonstrate extreme over or under activity?
display a lack of sensitivity or over sensitivity to sound, touch, or visual stimuli (such as loud noises, rough fabrics or bright lights)?
have unusual sleep patterns (such as trouble falling asleep or not sleeping through the night)?
eat only limited, specific foods?
Again I have to say if after reading this list you have concerns please contact your Doctor and he/she can direct you to the next proper step.
It was good to look back at my feelings in the beginning and see how far I have come and the peace I am making with my new "normal" in life with my sweet boys.
Last Night's devotional was on Renewing Faith after heartbreak.
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all so we fix our eyes on not what is seen, but what is unseen. For what is seen is temporary, but what is unseen is eternal." II Corinthians 4:16-18
Kathy started her thoughts with the definition of "broken" in Hebrew. "The Hebrew word for broken is shavar. This means 'to burst, break into pieces, wreck, crush, smash: tear into pieces (like a wild beast)...'" This definition is really violent but isn't that how we feel when we get a diagnosis of Autism for our child or anything life changing that we don't like. It feels like a violent storm is ripping through your heart and life.
I think the storm started for me when that Doctor tried to discipline my son in the office because he was obviously not listening to me after several attempts and my son still had no response to the Doc. What an eye opener! This is no longer an issue of poor discipline on my part but an inability to discipline at all. Then the Doc started asking some questions about his development and I knew right away what he was implying and I lost it. Started crying right there in the office and the rest is a blur. I spent the next 48 hrs making phone calls to the references he had given me and HOURS on the phone with my sister going over what her Child Psych references had to say about his symptoms. I am not sure but I think I have mentioned in the past that my sister has a bachelors in Psychology and is currently working on her Masters in Social Work, so she is better versed in all these childhood conditions than I was at the time. I think I have done more in depth looks at ASD and Sensory Processing disorder than she has now but she was my initial go to and still is when questions about medications come up and treatment options. Anyway, I think I prepared myself for the worst and I secretly relieved that I was not imagining how difficult my child is. At the time this had all happen I was trying every discipline technique that exists to man and nothing seem to be working. I was flustered and stressed and unsure of what to do next...I honestly had thoughts of calling Super Nanny LOL Plus just like most of us parents we know when something is off about our child. I just didn't realize how bad it really was. I had seen signs of something being off around age 1. After Monkey's first birthday he became intensely fearful of the vacuum. To the point that my husband would take him outside while I was vacuuming inside and even with a door and wall between us he would shake violently in fear. He took a lot to get to respond to his name now looking back at home videos but at the time he was our only child and we were constantly engaging him in activities because we had nothing but time for just him so I think that is why we didn't notice plus we didn't really know what "normal" was. The other thing I notice in the home videos is his complete quiet and lack of interest in me while I was video taping him. The other symptoms that I had been concerned about was his delayed speech. I remember a child I babysat for when I was in college that didn't speak until she was two but she did say yes and no and the occasional Mama and Dada before that. My child did not communicate other than tantrums until well after his second birthday. I was the one who spent the most time with him and he didn't say Mama until after he was 2 1/2. He also had other sensory symptoms that were kind of strange, like and intense fear of stickers...what child is afraid of stickers? I had nicknamed him "OCD Boy" because he used to line everything in the house up. I would open my pantry at times to find an entire section re-organized and lined up perfectly all labels facing out. He was playing outside one day and he took all the patio chairs and lined them up perfectly next to each other rather than around the table. And the cars and trains! Oh my, I would have parking lots of lined up cars in my living room. The symptoms I had not noticed until we started the diagnostic process was his lack of imaginative play, his fixations, the ways he interacted with his peers and his lack of expression. I had noticed that he didn't make real friends, he liked to say everyone was his "friend" and he would run up to them but then he wouldn't interact much with them and then if you asked him about a specific "friend" he typically could not tell you anything about them because he never engaged them but I didn't really see it as a red flag at the time. The imaginative play was another that I had noticed but didn't really see as a red flag. I may have been in a little denial but I also think I just didn't know. There was not enough asked by the Docs on development at his well check visits and I didn't have time to read books on development all the time. And nobody in my family wanted to scare me unnecessarily by telling me they were concerned; especially since I had made my concerns known already. I think they just wanted to comfort me rather than scare me more. I don't really remember a time since last May, when the Doc confirmed all my worst fears, that I have felt at peace and whole again, until now. My torn pieces are coming back together and it feels so good. Feels freeing. "Today's verse reminds us if we don't renew our faith, after being broken hearted, we will waste away. To be renewed inwardly means we need to privately take care of our insides. This is done by reading Scripture and praying" (Kathy Medina)
As my Non-Biblical study last night I read the first chapter of the diagnosis section of The Autism Sourcebook. It was the same checklist I have seen many times now and brief descriptions of the possible diagnoses that fall under the Spectrum. I chose to read that section of the book because I knew it would bring me back to the beginning and how I felt when this all started just like my devotional for the day did. So, I am going to share with you the list of symptoms Karen Siff Exkorn compiled for the book based on several list she has researched. Like she said in the book, this list is only to alert parents to the possible symptoms for ASD not for you to use to diagnose your child. If you do see a lot of these symptoms in your child than of course contact your doctor for further testing.
Does your two to five year old child...
not respond when you call his or her name or seem generally unresponsive?
not use his or her index finger to point to objects to indicate what he or she wants or to show you something?
have intermittent or no eye contact?
still not speak?
not speak anymore? (loss of words)
demonstrate odd or idiosyncratic speech or language-such as endlessly repeating nursery rhymes, echoing or repeating words or phrases, or making unusual sounds?
demonstrate odd or idiosyncratic behavior-such as hand flapping, finger flicking, or constant spinning?
experience emotional volatility and tantrums that are out of control?
have poor motor coordination when it comes to physical activities such as running or climbing?
fixate on objects such as ceiling fans or bright lights or parts of objects such as wheels of a toy car?
seem highly distracted or "spaced out"?
show inappropriate attachment to objects (such as always carrying around a statue or piece of string) or frequently put objects into his or her mouth?
engage in obsessive, repetitive behaviors such as opening and closing doors, turning light switches on and off, or lining up cars?
display ritualistic behaviors such as lining up books on the floor in a specific order at specific times?
engage in little or no spontaneous pretend play?
constantly play by him or herself, showing no interest in peers?
never bring or show you toys?
show no separation anxiety when you leave?
resist change and insist on sticking to specific routines or rituals?
engage in self-injurious behavior such as head banging or hand biting?
show no apparent fear of danger or pain?
not like to be hugged, cuddled, or touched?
have unanimated facial expressions and/or a monotone voice?
demonstrate extreme over or under activity?
display a lack of sensitivity or over sensitivity to sound, touch, or visual stimuli (such as loud noises, rough fabrics or bright lights)?
have unusual sleep patterns (such as trouble falling asleep or not sleeping through the night)?
eat only limited, specific foods?
Again I have to say if after reading this list you have concerns please contact your Doctor and he/she can direct you to the next proper step.
It was good to look back at my feelings in the beginning and see how far I have come and the peace I am making with my new "normal" in life with my sweet boys.
Friday, February 25, 2011
Peppermint Patty Brownies By Miss Betty Crocker
I got this recipe from the gluten free section of Betty Crocker's Website and it is AMAZING!
First you make the Betty Crocker Gluten Free Brownie Mix, just follow the directions on the box...
And I let Monkey lick the spoon cause he never gets to lick the spoon when I make regular cakes for Daddy's work and it is a HUGE treat :)
When it is complete you let it cool for 1 hr...
While it is cooling you can make the peppermint filling. First you mix 1/2 cup sweetened condensed milk with 1 1/2 tsp peppermint extract in the mixer and then you slowly add enough powdered sugar to make it crumbly (your total amount of powdered sugar for this recipe is 2 1/2-3 cups)
After it looks like this sprinkle the counter with powdered sugar and place the mixture on top of the powdered sugar so that you can begin kneading it into a ball.
I tripled the recipe when I made it because I was making some regular brownies for my husband's staff as well.
Now make sure you let that brownie cool the full hour or you may end up with it looking something like this when you spread the peppermint over the top of the brownie...
Still tasted good and you cover it with frosting so it doesn't much mater but it does make your job a little harder :)
Then you frost it...I cheated on Betty because the store was out of her whipped version of chocolate frosting and I prefer the whipped one because it is easier to spread.
And Voila!
Over the next few weeks I will share all my yummy holiday gluten free goodness recipes...YUM YUM
Day 2- Dazed and Confused but still Peaceful
Yesterday did not go well....I didn't get up until 6:45am and that only gave me enough time to start my coffee before peanut was up and then Monkey was up a short 30 min later. It took me nearly 3 hrs to write yesterday's post because of all the interruptions...ugh! And that was only the beginning... Goal to help Monkey during Nap Time...FAIL Had to run an event tent back to another restaurant about 1.5 hours from my house so with traffic it ended up being a 3.5 hr adventure during nap time :( Getting household chores done during the day...FAIL Boys in bed by 9:30...fail The day did not go well but when I was driving and the kids were screaming all I could think about was in only a few short hours when they are fast asleep I will have some peace with my books....(sigh)
So there I sat last night with my candles lit, tea kettle warming on the stove, slightly frustrated with myself for the way the day went but despite the swept but not mopped floor that was under my feet and the pile of unfolded laundry that sat on the pool tale behind me, I was calm again. With this challenge I have found a place to feel peaceful at night. No matter what kind of day I have had the Word of God has given me some comfort.
Then I read my devotional for the night and I was confused...
"Jesus asked the boy's father, 'How long has he been like this?' 'From childhood,' he answered. 'It has often thrown him into fire or water to kill him. But if you can do anything, take pity on us and help us. If you can?' Jesus said 'Everything is possible for him who believes.' Immediately the boy's father exclaimed, 'I do believe; help me overcome my unbelief!'" Mark 9:21-24
Kathy Medina went on to write her personal reflections on healing. She is convinced that God will heal her son someday...this kind of confused me because she made me feel like because I don't think God will heal my son I am not a believer. I believe God is capable and if it is part of his plan to heal my son, he can and will do it but I don't feel the need to pray for that healing everyday. Does this make me an unbeliever? I was very confused and a little concerned about my faith, had I missed something? SO I sat there blankly staring at my Bible "looking" for my answers but really I was just flipping the pages and praying to God for an answer to come flying out at me...lol I was crazy, it takes reading to find the answer not just blank stares...BUT I did find my answer with my prayers and reflections. Of course God does not heal all who believe on earth but he does heal you of all when you reach heaven. SO then I was on a quest to find the right scripture to back me up on this and stumbled on this scripture that spoke to me the most.
"Three times I pleaded with the Lord to take it away from me. But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weakness, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weakness, in insults, in hardships, in persecutions, in difficulties. For when I am weak , then I am strong." 2 Corinthians 12:8-10
So I am not wrong to think like that. God does chose not to heal in some cases because he sees a greater purpose in the weakness than in the healing. I guess where I see my own unbelief is in the fear that if God does choose to heal my Son then he will lose some of his quirks that make him who he is and the things that make him special. I have to believe that God has made him this way for a reason and I will see that reason in time. I also have to see that if healing is what is part of the plan that God has plans beyond my understanding at this time. The control freak in me has a hard time with letting go and and just accepting sometimes.
Because the devotional was all about healing I decided to grab my "Autism Sourcebook" for my non-Bible Study time. I opened up to the section on "Healing" expecting some kind of crazy chapter on how to heal your child's Autism (there are A LOT of theories out there on what the right cure is) I personally feel it is a neurological condition of the brain and the only thing that can truly heal it would be a miracle of God but I do feel with proper treatment and dedication you can get your child to a point where they appear to be "normal" and lead a "normal" life but I think the Autism is always there even if you have found a way to deal with it...ok off my soap box (I am sure others have their different opinions but this is just mine)
So, based on previous books I have read I was pleasantly surprised to read this...
"What I'm really talking about in this chapter is self-healing: accepting ourselves, our spouses, our families, and our children with ASDs."
"I now think of healing as an active process: an energetic and constantly evolving process that encompasses hope and acceptance."
"It's amazing what can happen when we really accept our children. We learn to experience life in the moment. Our perspectives change. We value the things we used to take for granted. We learn to celebrate little victories. In fact, little victories become monumental events--our child waves or claps for the first time; we get our first real hug from our four-year-old; we have a family outing, and there's not one tantrum. Allowing ourselves to embrace these moments is part of the healing process."
It was nice to read this chapter on healing because it just reaffirmed what I am doing is the right thing for this stage in my journey with my Son. Instead of obsessing over what I can do to heal him I have to get myself in the right place to help him and that place is at peace with our lives. At peace with the challenges that lay ahead for us. Accepting and without expectation, unattainable expectations will only hurt him and frustrate me and those are two feelings we do not need to add to this already chaotic life we lead. Peace and Love in the chaos...is what we need to hold on to. I thank God for this challenge because it is bringing me to the right place, oh Lord how you know my heart better than I :)
Goal for Today: Same as yesterday..."Puzzle Time with Mommy"
Come back later for my Recipe Share! I am getting back to that finally! I have a yummy dessert to share and lots of pics to illustrate :)
So there I sat last night with my candles lit, tea kettle warming on the stove, slightly frustrated with myself for the way the day went but despite the swept but not mopped floor that was under my feet and the pile of unfolded laundry that sat on the pool tale behind me, I was calm again. With this challenge I have found a place to feel peaceful at night. No matter what kind of day I have had the Word of God has given me some comfort.
Then I read my devotional for the night and I was confused...
"Jesus asked the boy's father, 'How long has he been like this?' 'From childhood,' he answered. 'It has often thrown him into fire or water to kill him. But if you can do anything, take pity on us and help us. If you can?' Jesus said 'Everything is possible for him who believes.' Immediately the boy's father exclaimed, 'I do believe; help me overcome my unbelief!'" Mark 9:21-24
Kathy Medina went on to write her personal reflections on healing. She is convinced that God will heal her son someday...this kind of confused me because she made me feel like because I don't think God will heal my son I am not a believer. I believe God is capable and if it is part of his plan to heal my son, he can and will do it but I don't feel the need to pray for that healing everyday. Does this make me an unbeliever? I was very confused and a little concerned about my faith, had I missed something? SO I sat there blankly staring at my Bible "looking" for my answers but really I was just flipping the pages and praying to God for an answer to come flying out at me...lol I was crazy, it takes reading to find the answer not just blank stares...BUT I did find my answer with my prayers and reflections. Of course God does not heal all who believe on earth but he does heal you of all when you reach heaven. SO then I was on a quest to find the right scripture to back me up on this and stumbled on this scripture that spoke to me the most.
"Three times I pleaded with the Lord to take it away from me. But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weakness, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weakness, in insults, in hardships, in persecutions, in difficulties. For when I am weak , then I am strong." 2 Corinthians 12:8-10
So I am not wrong to think like that. God does chose not to heal in some cases because he sees a greater purpose in the weakness than in the healing. I guess where I see my own unbelief is in the fear that if God does choose to heal my Son then he will lose some of his quirks that make him who he is and the things that make him special. I have to believe that God has made him this way for a reason and I will see that reason in time. I also have to see that if healing is what is part of the plan that God has plans beyond my understanding at this time. The control freak in me has a hard time with letting go and and just accepting sometimes.
Because the devotional was all about healing I decided to grab my "Autism Sourcebook" for my non-Bible Study time. I opened up to the section on "Healing" expecting some kind of crazy chapter on how to heal your child's Autism (there are A LOT of theories out there on what the right cure is) I personally feel it is a neurological condition of the brain and the only thing that can truly heal it would be a miracle of God but I do feel with proper treatment and dedication you can get your child to a point where they appear to be "normal" and lead a "normal" life but I think the Autism is always there even if you have found a way to deal with it...ok off my soap box (I am sure others have their different opinions but this is just mine)
So, based on previous books I have read I was pleasantly surprised to read this...
"What I'm really talking about in this chapter is self-healing: accepting ourselves, our spouses, our families, and our children with ASDs."
"I now think of healing as an active process: an energetic and constantly evolving process that encompasses hope and acceptance."
"It's amazing what can happen when we really accept our children. We learn to experience life in the moment. Our perspectives change. We value the things we used to take for granted. We learn to celebrate little victories. In fact, little victories become monumental events--our child waves or claps for the first time; we get our first real hug from our four-year-old; we have a family outing, and there's not one tantrum. Allowing ourselves to embrace these moments is part of the healing process."
It was nice to read this chapter on healing because it just reaffirmed what I am doing is the right thing for this stage in my journey with my Son. Instead of obsessing over what I can do to heal him I have to get myself in the right place to help him and that place is at peace with our lives. At peace with the challenges that lay ahead for us. Accepting and without expectation, unattainable expectations will only hurt him and frustrate me and those are two feelings we do not need to add to this already chaotic life we lead. Peace and Love in the chaos...is what we need to hold on to. I thank God for this challenge because it is bringing me to the right place, oh Lord how you know my heart better than I :)
Goal for Today: Same as yesterday..."Puzzle Time with Mommy"
Come back later for my Recipe Share! I am getting back to that finally! I have a yummy dessert to share and lots of pics to illustrate :)
Thursday, February 24, 2011
Day 1- Peaceful
So, I am not sure how these post are going to go...I am just kind of going with the flow of what I feel like writing and I am kind of a structure type person so I will structure these post as I see fits but it may not be the same everyday :)
So I did really well with my challenge yesterday. I was up at 6am writing yesterday's post, I got all my household chores done during the day with a little help from my husband since he was off yesterday and even had time for the beach yesterday afternoon. I wanted some me time so my husband took the boys down the beach and left me to read and I had grabbed Temple Grandin's book off my night stand before we left. I have been meaning to start this book for some time but had not gotten to it so I dug in. It was a lot of info in only a few short articles. She really opens your eyes to the way the Autistic child sees the world, especially a sensory sensitive one. The part I really felt spoke to me was about focusing on the strengths of your child and stop trying to fix everything "abnormal" about them because some things you think need to be fixed could be the very things that make them excellent. She feels like if we mess with genetics to "cure" ASD then we will have side effects we don't want, eliminating the very things about Autistics that make them so amazing. She feels that getting rid of Autism may eliminate the future of great people like Einstein, Thomas Jefferson and Bill Gates. These are all people she cited as possibly falling on the spectrum somewhere. Anyway, she feels we need to nurture and encourage some of the things that make our children so special just like any "normal" child and stop focusing on the characteristics that make them different from other children because especially in high functioning Autistics those characteristics are manageable with proper therapy and dedication.
Here were a few quotes from her I really liked...
"So if we get rid of the genetics that cause Autism, there might be a horrible price to pay."
"Well it would be nice to get rid of the causation for the severely impaired, if there was a way we could preserve some of the genetics, too. But the problem is that there are a lot of different interacting genes. If you get a little bit of the trait, it's good; you get too much of the trait, it is bad."
"There is often too much emphasis in the world of Autism on the deficits of these children and not enough emphasis on developing the special talents that many of them possess."
"Fixations and special interests should be directed into constructive channels instead of being abolished to make the person more "normal".
"Interests and talents can be turned into careers. Developing and nurturing these unique abilities can make life more fulfilling for a person with autism."
SO it seems yesterday I did things a little out of the order I had intended but I still got 50 pgs of non-Bible studying done in peace because I had help. Today will be different but like I have always believed God is mysterious in his ways because when I sat down to do my Bible study last night this was the first thing I read to start Day 1 in my devotional...
"Do not Conform any longer to the pattern of this world, but be transformed by the renewing of you mind. Then you will be able to test and approve what God's will is-His good, pleasing and perfect will." Romans 12:2
It brought me right back to the place I had been just a few hours before in the Temple Grandin book...maybe God is trying to realign my focus and to encourage me to think more positively...maybe :) I have spent so much time in waiting with my Son. I feel like I wait for the next meeting or Dr. appt rather than living in the moment and trying to encourage his great talents and trust me he has some amazing abilities. I am not sure what they will lead to but that is not for me to focus on I need to trust "God's will...His good, pleasing and perfect will." for my Son's life.
"Someday we will know how perfect His plan really is for our children and ourselves." -Kathy Medina So as I dug into my Bible after reading my devotional for the night I stubbled on many quotes that encouraged me and continued to bring me back to this same place. It is not my place to for see the future, only God can do that and he already knows what greatness my little Monkey has for the world and it is my job to encourage and help raise him to be that great Child of God he was born to be! "Train a Child in the way he should go, and when he is old he will not turn from it." Proverbs 22:6
I ended my nightly study with a sense of Peace and without Expectation which is a good place for me. I am the one who is always expecting too much and then I am disappointed when plans don't go as I had imagined. A lack of expectation is a good place for me.
I am setting a goal for myself today...putting my studies into action! I am going to spend my little Peanut's nap time encouraging and developing one of Monkey's talents. It will be "Puzzle Time with Mommy"
So I did really well with my challenge yesterday. I was up at 6am writing yesterday's post, I got all my household chores done during the day with a little help from my husband since he was off yesterday and even had time for the beach yesterday afternoon. I wanted some me time so my husband took the boys down the beach and left me to read and I had grabbed Temple Grandin's book off my night stand before we left. I have been meaning to start this book for some time but had not gotten to it so I dug in. It was a lot of info in only a few short articles. She really opens your eyes to the way the Autistic child sees the world, especially a sensory sensitive one. The part I really felt spoke to me was about focusing on the strengths of your child and stop trying to fix everything "abnormal" about them because some things you think need to be fixed could be the very things that make them excellent. She feels like if we mess with genetics to "cure" ASD then we will have side effects we don't want, eliminating the very things about Autistics that make them so amazing. She feels that getting rid of Autism may eliminate the future of great people like Einstein, Thomas Jefferson and Bill Gates. These are all people she cited as possibly falling on the spectrum somewhere. Anyway, she feels we need to nurture and encourage some of the things that make our children so special just like any "normal" child and stop focusing on the characteristics that make them different from other children because especially in high functioning Autistics those characteristics are manageable with proper therapy and dedication.
Here were a few quotes from her I really liked...
"So if we get rid of the genetics that cause Autism, there might be a horrible price to pay."
"Well it would be nice to get rid of the causation for the severely impaired, if there was a way we could preserve some of the genetics, too. But the problem is that there are a lot of different interacting genes. If you get a little bit of the trait, it's good; you get too much of the trait, it is bad."
"There is often too much emphasis in the world of Autism on the deficits of these children and not enough emphasis on developing the special talents that many of them possess."
"Fixations and special interests should be directed into constructive channels instead of being abolished to make the person more "normal".
"Interests and talents can be turned into careers. Developing and nurturing these unique abilities can make life more fulfilling for a person with autism."
SO it seems yesterday I did things a little out of the order I had intended but I still got 50 pgs of non-Bible studying done in peace because I had help. Today will be different but like I have always believed God is mysterious in his ways because when I sat down to do my Bible study last night this was the first thing I read to start Day 1 in my devotional...
"Do not Conform any longer to the pattern of this world, but be transformed by the renewing of you mind. Then you will be able to test and approve what God's will is-His good, pleasing and perfect will." Romans 12:2
It brought me right back to the place I had been just a few hours before in the Temple Grandin book...maybe God is trying to realign my focus and to encourage me to think more positively...maybe :) I have spent so much time in waiting with my Son. I feel like I wait for the next meeting or Dr. appt rather than living in the moment and trying to encourage his great talents and trust me he has some amazing abilities. I am not sure what they will lead to but that is not for me to focus on I need to trust "God's will...His good, pleasing and perfect will." for my Son's life.
"Someday we will know how perfect His plan really is for our children and ourselves." -Kathy Medina So as I dug into my Bible after reading my devotional for the night I stubbled on many quotes that encouraged me and continued to bring me back to this same place. It is not my place to for see the future, only God can do that and he already knows what greatness my little Monkey has for the world and it is my job to encourage and help raise him to be that great Child of God he was born to be! "Train a Child in the way he should go, and when he is old he will not turn from it." Proverbs 22:6
I ended my nightly study with a sense of Peace and without Expectation which is a good place for me. I am the one who is always expecting too much and then I am disappointed when plans don't go as I had imagined. A lack of expectation is a good place for me.
I am setting a goal for myself today...putting my studies into action! I am going to spend my little Peanut's nap time encouraging and developing one of Monkey's talents. It will be "Puzzle Time with Mommy"
Wednesday, February 23, 2011
New Focus and a 40-Day Challenge
I have stopped posting for awhile...there really has not been any news to report and I have been feeling discouraged because everything is moving very slow until the last couple weeks but even with that there is nothing more for another few weeks. I will post the update in my "Where are we?" Tab after I finish this post.
I had decided a few months ago I was changing the direction of this blog a little. I wanted to infuse my faith more because it is a huge part of my life but once I decided to make that more of a focus I was at a loss, I didn't know what to write anymore. The truth is I have been relying mostly on Therapists and Doctors and not at all on God, when it comes to my Son, and that is where I have been going wrong. This revelation hit me while my Husband and I were vacationing in Jan. (We won a fabulous trip to St. Lucia from his company) I got a disturbing e-mail three days into the trip from my Sis-in-Law, who was caring for our kids. She was having a really difficult time with our little Monkey, he was becoming aggressive and and at times uncontrollable and she was overwhelmed. My biggest fear and the reason I cried when I left my kids was coming true...I realized that my life really was going to be different, when other parents' biggest concerns are that there kids will cry for them and miss them, mine will always be will this untrained family member or friend be up for the challenge of taking on my kid... I knew I was on this Island in the Caribbean and I couldn't get back for 4 more days so I was left with no choice but to turn to God and pray for my Boys and my Sister-in-Law and that was when I realized I had not done that enough when it came to my Son. Sure, in my desperate moments when I think it is all too much and he is having an uncontrollable tantrum, I often lock myself in a bathroom and cry and pray but that is always a quick prayer of desperation "God, please make him stop, I can't take anymore today!" I have never taken the time in my Bible reading or studies to just focus on this major issue in our lives. It seems so crazy to me now but I think I was so focused on what the medical research had to offer to comfort me, that I lost sight of the one place in my life I have always felt true comfort and HOPE!
So, here I am with a new focus for 40 days...
Finding God in Autism by Kathy Medina…the only Christian Devotional (I could find) for parents with ASD Children. And of course God knows my heart and led me to this one because it offers a challenge in the intro and he knows I need that to stay focused. Kathy Medina, the author, started this devotional because of her own 40-day challenge she placed on herself.
Hers was 3 part and they were things she knew would be difficult to do but that only strengthened her commitment:
1. “First, I promised to read my Bible every single day. Seven days a week and reading in church on Sunday did not count! I committed to having a personal study with God every single day for forty days.”
2. “Second, I committed to laying hands on our son and praying in my prayer language every night for forty consecutive nights. After our son was asleep, I would kneel by his bedside and pray while laying my hands on him.”
3. “Third, I committed to taking communion and remembering what Christ’s bloodshed did for me every single night for forty consecutive days.”
So in this intro she shares how God blessed her and it is amazing and truly inspiring to read so I am so excited to start this devotional! My challenge is going to have a couple more parts, I was going to try to stick to just three but I want to add a couple because I feel like I need to commit to a couple things that are not part of this devotional to make it possible for me to do this challenge. So…here it is…
1. I am committing to doing this devotional every night after the kids go to bed. I only get enough quiet time at night to get the right focus for this study. And as part of the devotional I will of course be reading my Bible as well.
2. I am committing to studying one of my reference books on Autism as well (I have a law course on special needs laws I am getting ready to start and that will be part of this challenge), once a day, after I complete my Bible time, so that I have good focus.
3. I am committing to praying over my Son every night.
4. I am committing to getting up at 6am every morning to have me time and to blog about my devotional time and study time from the night before. As part of this I am going to keep a prayer journal during my devotional times to reference and help me be a good testimate to God’s Blessings in my life now and in the future.
5. Lastly, in order to make all this possible I need to commit to finishing all my household chores during the day in order to allow my self proper time and focus at night to do my devotional and study time. I normally do most my chores at night after the kids go to bed so that I can just muscle through and get them done without interruption from the kids but both boys are big enough now that I should be able to make the time during the day to muscle through and get things done with little to no interruption, I just have not made that transition because I am too comfortable in my ways…see I needed this challenge :)
I had decided a few months ago I was changing the direction of this blog a little. I wanted to infuse my faith more because it is a huge part of my life but once I decided to make that more of a focus I was at a loss, I didn't know what to write anymore. The truth is I have been relying mostly on Therapists and Doctors and not at all on God, when it comes to my Son, and that is where I have been going wrong. This revelation hit me while my Husband and I were vacationing in Jan. (We won a fabulous trip to St. Lucia from his company) I got a disturbing e-mail three days into the trip from my Sis-in-Law, who was caring for our kids. She was having a really difficult time with our little Monkey, he was becoming aggressive and and at times uncontrollable and she was overwhelmed. My biggest fear and the reason I cried when I left my kids was coming true...I realized that my life really was going to be different, when other parents' biggest concerns are that there kids will cry for them and miss them, mine will always be will this untrained family member or friend be up for the challenge of taking on my kid... I knew I was on this Island in the Caribbean and I couldn't get back for 4 more days so I was left with no choice but to turn to God and pray for my Boys and my Sister-in-Law and that was when I realized I had not done that enough when it came to my Son. Sure, in my desperate moments when I think it is all too much and he is having an uncontrollable tantrum, I often lock myself in a bathroom and cry and pray but that is always a quick prayer of desperation "God, please make him stop, I can't take anymore today!" I have never taken the time in my Bible reading or studies to just focus on this major issue in our lives. It seems so crazy to me now but I think I was so focused on what the medical research had to offer to comfort me, that I lost sight of the one place in my life I have always felt true comfort and HOPE!
So, here I am with a new focus for 40 days...
Finding God in Autism by Kathy Medina…the only Christian Devotional (I could find) for parents with ASD Children. And of course God knows my heart and led me to this one because it offers a challenge in the intro and he knows I need that to stay focused. Kathy Medina, the author, started this devotional because of her own 40-day challenge she placed on herself.
Hers was 3 part and they were things she knew would be difficult to do but that only strengthened her commitment:
1. “First, I promised to read my Bible every single day. Seven days a week and reading in church on Sunday did not count! I committed to having a personal study with God every single day for forty days.”
2. “Second, I committed to laying hands on our son and praying in my prayer language every night for forty consecutive nights. After our son was asleep, I would kneel by his bedside and pray while laying my hands on him.”
3. “Third, I committed to taking communion and remembering what Christ’s bloodshed did for me every single night for forty consecutive days.”
So in this intro she shares how God blessed her and it is amazing and truly inspiring to read so I am so excited to start this devotional! My challenge is going to have a couple more parts, I was going to try to stick to just three but I want to add a couple because I feel like I need to commit to a couple things that are not part of this devotional to make it possible for me to do this challenge. So…here it is…
1. I am committing to doing this devotional every night after the kids go to bed. I only get enough quiet time at night to get the right focus for this study. And as part of the devotional I will of course be reading my Bible as well.
2. I am committing to studying one of my reference books on Autism as well (I have a law course on special needs laws I am getting ready to start and that will be part of this challenge), once a day, after I complete my Bible time, so that I have good focus.
3. I am committing to praying over my Son every night.
4. I am committing to getting up at 6am every morning to have me time and to blog about my devotional time and study time from the night before. As part of this I am going to keep a prayer journal during my devotional times to reference and help me be a good testimate to God’s Blessings in my life now and in the future.
5. Lastly, in order to make all this possible I need to commit to finishing all my household chores during the day in order to allow my self proper time and focus at night to do my devotional and study time. I normally do most my chores at night after the kids go to bed so that I can just muscle through and get them done without interruption from the kids but both boys are big enough now that I should be able to make the time during the day to muscle through and get things done with little to no interruption, I just have not made that transition because I am too comfortable in my ways…see I needed this challenge :)
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