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. :)

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!

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.

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 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 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 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"

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 :)