Autism

Over at No Greater Joy Mom, Adeye is highlighting lists of different special needs, so people can link their blogs to them if they are raising a child with that need.  This will be a wonderful resource for anyone praying about and thinking about adopting a child with that special need.  Or even for people raising a child with that need, that might need ideas, encouragement and support.  The three special needs that Adeye most recently highlighted are Fetal Alcohol Syndrome, Autism and RAD.  I did write a post focusing on our experiences with Fetal Alcohol Syndrome here. 

Today,  I am going to share with you our experiences with Autism.  All diagnosis are complicated and have a wide range of differences from child to child.  We have two sons with Autism.  In some ways they are so much alike and in other ways they are so very different.

Our biological son William was born with autism.

I must insert here that William was always a sweet, quiet, loving and obedient child.  It is just his nature.  Growing up he always did his best to comply with what we asked of him.  The things he cried or melted down about,  he would try to do but they caused him so much discomfort or made him feel so badly he would just sit and cry.  It really was pitiful.  I wanted to help him so badly over come the things that caused him irritation.  But what I learned over time, was that exposing him more and more to the things that bothered him, is what helped him personally become less irritated by them and he could tolerate it more and more.

The first things we noticed were, from the time he was born he had sensory issues.  He did not like to be rocked, ride in a car, get a bath or be sang to.  Sounds bothered him if they were even a little to loud.

As he grew he had texture issues when eating and refused to do anything but nurse or drink.  I offered age appropriate foods many times a day as he grew and he would play with it a bit and gag on it but did not like any food with texture.  

My sister finally made it her personal mission to get him to eat something... anything… and won him over through taste.  She finally got him to eat dutch apple baby food.  So for a very long time nursing and dutch apple baby food was all he would eat.  We eventually had to take him to feeding therapy.  We learned a lot at that time but as he grew older he would have never progressed with out God and tough love in this area.  After years of eating being a huge struggle for him, with much gagging and issues both in taste and texture, we kept at it and I can now report, he is a normal teen that devours just about anything in mass.

As he learned to speak, he spoke in “his own language”  We could tell he thought he was speaking like us and he thought he was saying his words correctly but we could not understand him at all.  He actually spoke in all vowels.  The doctors thought that he was hearing impaired or deaf.  After much testing they found he had audio processing disorder.  His ears worked fine but the sound was lost on its way to the brain.  After years of therapy, he finally started to add in consonants and we could understand him more and more by the time he was six.   I must admit it was very hard having almost no way for him to communicate all those years.  He knew basic signs but it was not enough for him to express himself as he grew older.  He continued in speech therapy till he was 15 years old.  He still speaks with a heavy accent.  Some people think he is from another country.  He jokes and says he speaks “William-eese”.

He had issues sleeping and still does to this day.  He had sensory issues with clothing. The changing of the seasons was very hard on him.  Going from the way shorts feel, when wearing them, to long pants was hard and then back again in the summer to shorts.  Same with long and short sleeves.  I always dreaded jacket season as he didn't like to wear it for quite a while till he got used to it.  He also did not like motion.  He was in weekly Physical and Occupational therapy to address these issues till he was about 11 years old.    

He craves heavy input.  From the time he learned to walk, he would run up to me, many times a day, smash into me like doing a tackle and hug me as hard as he could.  At the same time he wanted me to hug him back hard.  I had to put an end to this when he was around 9 years old as he would just knocked me off my feet.  He still comes up to me around 10 times a day,  saying he needs a hug and as he hugs me I have to say over and over “gentle”,  “gentle”  and I hug him back.  If I don’t remind him to be gentle every time, his hugs are so strong they actually hurt me.  He has learned that he feels better if he does a brushing program every day. (Wilbarger Brushing Protocol)  I used to do it for him when he was small.  But he does it now every day himself as soon as he gets up.  He says he can feel the difference if he does it or not, so is faithful to do it.  It keeps him calmer, more focused,  less anxious and less jumpy.  

Sometimes he just needs to go out side and jump or move heavy objects or push heavy things.   I know that sounds strange but once he does things like that he feels better.  Farm work is great for him and he loves it.  Moving hay bales, mucking stalls, stacking fire wood and sitting on the lawn mower (vibration) and mowing for hours…all things he loves and asks to do.  Yippee for me, right?

As William grew he has had a lot of learning disabilities.  One of them is dyslexia.  Schooling is hard.  Very hard for him. He has a very hard time memorizing and pulling answers from his memory when needed.  He can not sit and take a test.  It is very over whelming and the wording of questions are confusing.  He can learn.  It just takes a very long time on each thing to finally get something down pat. (Notice in the below pictures his faithful dog Will, he got her when he was around 8 years old and named her after himself.  He has always taken total care of her.  They are very bonded.)

He does read a LOT.  He reads several novels a week.

He is also very good at taking things apart and putting things together.

As William has grown up he has come so far and over come so much.  He was not a hard child to raise as I sympathized with his struggles and just wanted to help him in any way I could.  We prayed a lot and God has been faithful.  God has helped William learn to work around or with his learning and sensory issues.  He has adapted a lot.  William is one special, wonderful, young man.  He just comes across as quirky, sweet, kind, brutally honest and sensitive.

William is a very wonderful young man.  We have had many struggles to work thru but loved seeing him grow and learn. I am grateful to God that He allowed us to raise him and call him our son.

Zeke is our other child that has autism.  He was born a medically fragile child.  He was born to an HIV positive mom.  He had a slew of medical issues, but autism was NOT one of them.  He was a bubbly, happy, sweet, chubby-cheeked baby whose smile took up his whole face and eyes sparkled with joy.

Even when he was not feeling well he was a happy and good baby. By the grace of God and in a very miraculous way, Zeke had the HIV antibodies wash out when he was 18 months old and over came most of his more serious health issues by the time he was 2 years old.  At that time he was diagnosed with  low tone Cerebral Palsy.  He still had a lot of breathing issues and was on a lot of asthma meds and breathing treatments as well.    He was lagging a bit in development but was talking and going forward at his own pace, which was not terrible considering his ruff start.  We started his shots when he was three years old.  Right away he got very sick with fevers, lethargy and head colds non-stop.  This went on for a few months.  His health just kept declining till he went into bone marrow failure and was hospitalized needing many blood transfusions.  Over those few months of sickness the happy, bubbly, sparkly eyed Zeke slipped away.  When he came home from the hospital he could not walk or talk and would not make much eye contact.  He was just not there anymore.  It was heart breaking.  From then on our life drastically changed.(all our pictures of him from here on out are of him with a fake smile or not looking at the camera, unless we caught a rare smile while tickling him, until he learned to smile when asked so we could take a picture.)(still to this day we take several and keep the best one of  him)

After he was released from the hospital He wanted to play alone.  If you could call what he did now play.  Spinning the wheels of cars or staring at his hands opening and closing.  Picking at things.  It was hard to get him to interact and he did not like to be touched a lot anymore.  He did not like movement at all.  He did not sleep and we had to keep him save 24/7 from wandering in the night and getting into things.  He had to be supervised all his waking hours.  He had no sense of danger or that he might get injured doing something.  It was beyond hard.  He would try to or eat anything from dirt to foam. 

About a year later I started to pray about Zeke, how to help him and started doing research.  I believe God brought me to, what was called at that time, the DAN protocol.  (Defeat Autism Now) protocol.  (they have since been sued and had to change the name)  By the grace of God as soon as we started making changes Zeke began to improve. Everyone who knew him saw it.  Even his therapist who worked with  him weekly.
 

I pray all the time about healing and progression for Zeke.  Over the years we have tried many, many things.  Some have worked or helped more than others.  Some have not worked or helped at all.  He has very good self control when off dairy and gluten.  We keep sugars, dyes and soy out his diet as much as we can, as they make a huge difference as well.  He has had to be in PT, OT and speech his whole childhood.  He only graduated from PT about two years ago.

His behaviors and issues were very hard to go thru and work around.  Before we found out his trigger foods he had times when he was beyond angry and would lash out at us and the other children violently.  He falls a lot and gets hurt and does not know it.  Like he does not feel pain the same as others.  He does not take discipline well and I have to be very gentle when correcting him or he just sobs in sorrow for hours.  He is sensitive and it wounds him to have made us unhappy with him. He prefers to not talk so we have to ask him to use his words at times.  Even then he is often very quiet when he speaks and if you miss it, he will not or can not repeat himself.  He can and does play appropriately now which is a wonderful thing to see.  He also has on and off days.  Days he does pretty well with focus and attention and days he is just in a heavy fog and regresses some. 

Like this day my dad and I took him to a train show in 2009.  I could not get him to make eye contact with me or give  me a smile on comand smile for anything.  Bless his heart.

But just a few weeks later we went to ride a train in Chattanooga and he was able to concentrate and acted more like himself making eye contact well and obviously enjoying himself with smiles that came easier when asked.  

We still do have to take into consideration a lot of things when we travel or think if we should take him certain places or not.  As he can not handle going to some outings very well.  Even with all this, God has helped us and he is doing better and better all the time . He has come so far and is such an obedient, helpful, wonderful boy.  I don’t regret one day of challenges in raising him.  We have grown so much ourselves in learning how to parent him.  God has blessed us with a wonderful son that we love and are forever grateful for.  He daily blesses our lives.  Below is Zeke and his dog Roo Baby.  He has had her for five years.

As far as having two in the house on the autism spectrum…life is never boring... William and Zeke both like a pretty predicable routine.  Actually, I can say that about most of our children.  Big family, busy household.  We have to stick to at least a loose routine.  William and Zeke both like and play with the same type of toys.  They both like things the same way all the time.    They both like sensory input and both wrestle HARD daily with each other.  I often have to put a stop to it. (but some of that is just boys I think)  They have both over come their food aversions for the most part.  They both struggle in schooling with learning disabilities. 

Zeke still has huge sensory issues.  He will actually put up a fight if you try to get him on a ride at the fair and he is often anxious in large crowds.  The boys recently spent the day out with my sister and she got Zeke to go up an escalator!  Go sister!

He likes playing in the sand and water at the beach though.

He still wears pajamas all day, every day, inside out, as they are soft and the seams and tags bother him so badly when worn the correct way, we are still working on this.  If we go to town I make him dress appropriately.  Zeke also gets distracted very easily.  He also has to have something in his hands all the time to break apart, tear up, or fidget with when sitting still to do school work.  There is always a pile of eraser crumbs, paper pieces or bits of something under his desk I have to sweep up daily as he destroys things.  

Both boys are a joy and blessing and such wonderful sons to Tim and I.  It is hard to see them struggle so in life but God has abundantly helped and blessed them in all they do.  They truly are happy and respectful young men that love us and make good choices.  They love the Lord and try their hardest all day every day. 

Thank you God for William and Zeke!

Psalm 127:3-5  Lo, children are an heritage of the Lord: and the fruit of the womb is his reward.  As arrows are in the hand of a mighty man; so are children of the youth.  Happy is the man that hath his quiver full of them: they shall not be ashamed, but they shall speak with the enemies in the gate.