Wednesday, June 19, 2013

Amusement Parks Do Not Amuse Zeke

When Zeke got Autism he needed a lot of different therapies.  One of them was Physical Therapy.  He had horrible sensory problems and was diagnosed with sensory integration issues.  He did not like movement that he felt he had no control over.  Like swinging or children’s rides at Amusement parks or the County Fair.  We did all kinds of daily brushing and joint compressions.  Tortured him with swinging him at home and playing lots of movement type games.  He has low tone cerebral palsy and tripped and fell a lot.  When he was that young, he did like movement and craved sensory input that he had control over.  Like over exaggerating a fall so he could feel the bang of hitting the floor or wall extra hard.  Or he would run at us full speed and bang into us.  Sometimes giving us a huge very hard squeeze as he did this.  He would like us to squeeze him hard back.  Needless to say he wore a helmet to protect his head when he was young when playing during the day.  We took it off when eating, sleeping or watching a VCR tape.

As the years went by he did indeed become used to movement.  Well, I guess tolerated it. We don't push him to do things.  Just see if he wants to when we do them.  He is still not fond of movement he has no control over but can handle elevators and escalators and he would ride kids rides at the fair ground if they were low key and the other kids rode them too with him to give him confidence.  But in all our family pictures you can see he is not usually truly happy doing it.  

2008... The only way out...come to ma ma Zeke!

 Very worried.

 Tolerating the swings.

I think he felt like he had some control on this ride because of the mock steering.  

He now rides a bike, his pony and swings on the swing set independently and happily. 

He handles movement good enough to function in life now.  Especially things that are familiar to him.

But still prefers to keep his feet on the ground.

Another thing that was an issue when Zeke was small, was that he had absolutely no sense of danger or that he would get hurt as an effect of not avoiding a cause.  He would dart out into traffic if not buckled in a shopping cart or stroller.  If walking we had to have a firm grip on his hand.  He would see something and just take off to see it.  On a playground he would walk right off the top of the slide if one of the bigger kids was not helping him through the motions of sitting down and then sliding down.  His depth perception and spatial relation was off and he would trip off curbs or trip over things.  He would be awake a lot in the night and we needed sleep, so he had a tent on his bed to keep him in bed safely while we slept.    As he would get up and wander without it and could possibly leave the house or get hurt in the house with no supervision. 

Starting at a very young age we would tell him the danger every time we did something so as to try to ingrain in him that something was indeed dangerous.  Like……..Give me your hand, crossing the street is dangerous, you don’t want to get hurt by a car……..Or….sit in your car seat and buckle up.  You could fall out and get hurt if you are not bucked in…….. Or…look a stop sign.  Lets stop……Or…… Do we go anywhere with a stranger?   Nooooo…..we don’t go anywhere with a stranger, they can hurt you.

We have done this for years and slowly he started to get danger and understand.  We were thrilled.  Just thrilled.  With his autism once he understands a rule.  That is a rule and you never break it.  So once he really got the parking lot deal, he would get out of the van and quickly grab our hand and quote the rule word for word we said.  Saying….I will hold your hand, I don’t want to get hurt by a car….    As he grew up he understood to stay in bed at night until we let him up with permission.  All of these things made life soooo much easier.  Praise be to God.   I can’t even tell you how much better it made life until……..

Four years ago we decided to take the kids to Lake Winnie.  It is an amusement park an hour away.  We had never been there before and had saved up some money so we could take the kids.  Everyone was so VERY excited as we entered the park.  About 100 feet into the park Zeke froze.  His eyes were wide open and he would not move.  We tried to get him to walk with us and go from ride to ride.   But all he would do is panic and hold his hands over his ears saying danger over and over.  He would not ride a single ride because he thought they were so dangerous.  Every time his siblings went on a ride he flipped out at how dangerous it was and cried for their safety.  When they rode the ski lift/sky ride he just cried and cried so worried that they would fall off or they would lose their shoes (that their shoes would slip off from so high up and they would lose them)  I tried to get him on a ride thinking he would see he liked it and that it was safe and fun.  No go.  Trying to get a huge kid kicking, screaming and hitting onto a ride just drew to much attention.  I quickly gave up.  Tim tried to take him away to the playground,  so the rest of the kids could ride without upsetting him so much.  But it didn’t work.  He was over stressed,way to upset and knew the kids were out there riding the rides.  He could not understand who on earth could possibly have made this dangerous place and actually let kids on it all!  By this time Antonio was overcome by the heat and retching every so often.  Tim finally found an air conditioned room and took those two into it and sat with them, trying to keep them entertained (and Zeke distracted), the rest of the time we stayed. We cut the day short and it was not exactly the happy trip we had planned. 

Since that time if we are going to do anything with the kids like this Tim takes the day off to stay home with Antonio and Zeke and he plans a fun day for them in town.  And I take the rest of the kids to enjoy the Amusement park.   

What brought all this to mind is that we have saved a small amount of money and have plans to take the kids to Lake Winnie this week and Tim has taken the day off (for Antonio and Zeke) to have a special fun day with daddy in town complete with eating out and shopping.   God is so good. 

Autism is just plain hard at times.  Although Zeke now tolerates movement he has went from one extreme with danger to the other.  I feel some guilt that I can’t help him find the happy medium in it all.  Bless his heart.  Last year he did make a step in the right direction though.  When the Fair came to town last fall they had a special day that they were open just for children with special needs, home school children and the elderly.  Antonio, William, Carolyn and Elizabeth wanted to go badly.  Tim had to work.   I asked Zeke if he wanted to go and he said yes.  I reminded him of the times he has freaked out in public over seeing kids on the rides and he said he thought he could handle it.  The Fair is a lot smaller and has way fewer thrill rides than Lake Winnie......So we went and even though he didn’t want to ride on anything.  He was ok with being there. He mostly went from bench to bench and ate food.  :)   
I could tell he was not relaxed and himself, but he was not melting down.  I was so pleased with him and his effort.  So Praise God for baby steps!


Psalm 18:29  For by thee I have run through a troop; and by my God have I leaped over a wall.

2 Corinthians 3:18 But we all, with open face beholding as in a glass the glory of the Lord, are changed into the same image from glory to glory, even as by the Spirit of the Lord.

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