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!

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.

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


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 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.

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

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 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 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 :))

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 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!