Tuesday, June 12, 2012

The Sweetest Little Man

Ok, I think I'm about ready to talk about Joshua now.  For anyone who doesn't know, about a month ago Josh was evaluated and they "suspected autism."  Maybe it's the pregnancy hormones, but I just felt really overloaded with 3 kids and the oldest is 4 plus having another on the way, and then adding in a child with special needs, um I don't remember signing up for that.  Anytime I thought about my special little man having autism, I would cry and think that there is no way I could handle that.  People would offer to help and give me websites and things to look at, but anytime I tried I would cry... every time I would think I was ready to talk about it, I wasn't and I would cry...needless to say there have been a lot of tears over the past month, but at least today, I am ready to share what has been going on.

I have always known that Josh is a special little guy.  He was born 3 weeks early with the cord wrapped around his neck.  His nose was upturned and I was really worried that he would always look like a pig! haha (luckily he is super cute now) He was considered lacktoseintolerant (sp?) so he was on the "I'm allergic to everything" formula.  At 6 weeks he was admitted to the hospital with RSV.  He is super clumsy and always has bumps and bruises everywhere.  He is the only child that still loves to snuggle with me and gives tons of hugs and kisses.  He has always loved cars and trucks and is never seen without them in his hands.  I thought I noticed some differences with him but maybe because I'm with him all the time I didn't see how major they were, or I just chose to ignore it.  Over the past 5 months I have had probably about 5 different people ask me if Josh has any special needs or developmental needs.  At the time I would say, no, not that we know of.  But when that many people ask you over that short of a time you start to notice things....

The two main things that I noticed were that 1)he would never play with other kids.  He would rather take is cars and sit in a corner and play by himself.  2)he doesn't make eye contact.  With people he knows well he may look at them for up to 4 seconds tops and if he doesn't know you, you are lucky to get a 1 second look.  For some reason, his pediatrician never noticed anything, but I decided to go in and have him evaluated.

About a month ago we went in to the initial or "mini" evaluation.  Basically they let Joshie play with toys in a room while they asked me questions.  It took about an hour and a half and Josh never interrupted once.  I asked if that was normal and the said "no way." Even children with disabilities would check in with their parents or not feel comfortable playing by themselves in a new environment like that.  So after answering all their questions and seeing how Josh wouldn't interact, that is when the suspicion first came up and we set up a time for a full evaluation with 5 people there to evaluate and rate Joshie.

That evaluation happened today.  The first part of it was a sensory test.  He did really well with that.  The biggest thing that happened was he had to wash his hands after he touched anything.  He does this at home all the time.  If he eats anything or plays anything he has to wash his hands or he has a meltdown.  Then they moved into the room that I was in and just played with him to see how he would react and engage.  So they played with different toys/puzzles/games with him.  One of the things he would do is slowly move in between the toy and the evaluator so his back was to her and he could play with the toy by himself.  He also would do the same thing over and over and not be willing to try playing with the toy any differently.  He would also repeat the same words over and over.  If he felt he had to share he would eventually surrender the toy but then move on to something else.  If he picked a toy he would play with it for a while but if the evaluator introduced something he wouldn't even pay attention.  He wouldn't look at any of them even if he was talking.  He would ignore most of them altogether even if they wanted to play with them or if they were in the way of a toy he wanted he would turn his back to them and find something else.  When coloring he would hold the marker with his fist and wouldn't copy lines/circles/etc... he knows color names but doesn't understand what colors are what.  If somebody would ask him a question he would answer but more often then not he responds with something having nothing to do with the question.  Ex. while saying hi to Grandma Conners on the phone the conversation went something like this:
G-ma: "Hi Josh"
Josh: "Hi"
G-ma: "How are you"
Josh: "blah blah blah (jargen, no idea what he said...) mac and cheese
G-ma: "Are you having fun?"
Josh: "blah blah blah... cars"
G-ma: "I love you"
Josh: "Love you too, bye"

So he is really good with greetings but I have no idea where the mac and cheese and cars come from.  The evaluators said his articulation is very good, but most of the time you have no idea what he is talking about because his mind is in a different place talking of something else.

Overall, this is typically how he acts, he is in "Joshie World" most of the time.  It is really hard to take all 3 kids out because you just never know when Josh will go into his world, and if he does it is really really hard to deal with him.  And I'm one of those moms at the grocery store who when people are looking at me and judging me because my child is throwing a fit, I just want to say "You have no right to judge because you have no idea what it is like to have a child with special needs."

Anyway, the evaluation took about 2 1/2 hours today and I left with Josh while they deliberated about and came up with his scores.  I went back about an hour later to go over the results.  The use 2 different scores I guess (kind of like how you have 3 different credit scores) and the first one Josh was for sure on the Autism Spectrum Disorder side on the other he was barely on the autism side.  So with the 2 scores being on the Autism side and with what they evaluated they believe Josh does have minor autism.  He will be starting at a special school in August and working with a speech pathologist.  Basically Josh is about the level of a 2 1/2 yr old and he is 3 1/2 so he is a year behind developmentally so they will really be working with him on that.  I feel so blessed that we moved to Plano because they have one of the top special need programs in the country!  Basically, while Josh is in school we will never leave Plano so he can have these great resources and support.  We (the evaluators and I) are very hopeful because he is so young that the intervention now will help him be able to get over and handle his symptoms.

Next week I will have a meeting with all the people that will be involved in helping him like his teacher, principal, and speech pathologist.  I will also get information from Autism Speaks and from the Autism Support Group in Plano.  I'm excited for that because I feel very overwhelmed right now not knowing anything about raising a child with Autism.  But even more then the support for me I know that God knows everything that Joshua needs and he will help us through this time in our lives.  How grateful I am to know that I'm not alone in this and that I have the love and support of a loving Father in Heaven who will help me every second of every day.

Josh may not understand everything we say or do, but he knows the words "I love you" and he knows how much Kyle and I love him, as well as everyone else that is involved with his development.  Just like I said in the beginning of this post, I know Joshua is a special little boy and I know Heavenly Father has great things in store for him and he will be able to accomplish it all.  I love you Joshua Kyle Hercules!

1 comment:

Randy and Meganne Grumbles said...

Sarah, Your post touched my heart so much. I want you to know that you are not alone in your thoughts and worries. The reason we moved to Plano, was for James to be evaluated when he turned three and to benefit from the wonderful programs here in Plano. James was being evaluated during the time I was trying to concentrate on MK and I just couldn't handle it all at that time and had to put him first and Reaganne with her school issues. So, everything you wrote about your Josh I could say DITTO to my James. He just finished his first year at Beaty ECS and has progressed so well. He is talking so much more, but still has a long way to go with articulation and socialisation with others. He is the kid in the corner with his cars and bey blades (because they spin). I am not sure what ECS you are at, but they are all wonderful. You will be in my prayers and your ARD meeting will go great. He is where he needs to be and we too will pay a arm and leg to rent here in plano, so James can have his two more years of school at Beaty. ;) Plus, Reaganne is repeating Second grade next year and we hope that she will do better and be where she needs to be academically. I don't share these issues with others outside of family, and it is hard to think about and understand. But, I AM HERE FOR YOU IF YOU EVER NEED TO TALK! HUGS