Monday, April 2, 2012

Jacob's yearly evaluation

So today was a BIG day.  For starters and most importantly, my baby girl turned 9!! I can hardly believe I am a mom to a 9 year old.  Secondly, today was national autism awareness day and Autism Speaks' light it up blue day.  Next, I got my first few hours of training in ABA therapy to become Jacob's therapist.  Lastly, Jacob got his yearly evaluation from ECI.  ECI, which stands for early childhood intervention, is a statewide program for families with children birth to three with disabilities and developmental delays.  For a while now I have been wondering how he compares to the average 22 month old.  This test covers everything from communication to adaptive to personal-social.   They also send his test information to the public school system to get him qualified for special education at age 3.  All 3 therapists agreed that as of now he would qualify for special education, which I figured.  The test tells what age he is equivalent to compared to an average child.  His test scores are as follows:

Adaptive:  13 months he is 38% delayed
Personal-social:  8 months he is 62% delayed
Communication:  6 months he is 71% delayed
Gross Motor:  25 months he is not delayed
Fine Motor:  8 months he is 62% delayed
Cognitive:  13 months he is 38% delayed

I knew his communication was behind and I knew he couldn't imitate, but I still sometimes question how severe he is.  I know other people that see him wonder it as well.  People say, "He seems so normal" or "He seems like every other kid".  I totally understand what they mean.  I think the reason people think that is because he is making OK eye contact and he walks around and plays with toys like other kids  Also, autistic kids don't really look any different physically.  But this was good for me to see.  I wanted to know exactly where he tested. 

Autistic kids at an older age are more obvious to an outsider.  They may be socially awkward or they may throw outrageous tantrums, etc.  So, if Jacob looks like every kid and acts pretty normal in a class what makes him different?  How do people know at this young of an age that he is autistic?  For instance, he has no motor imitation which means he doesn't wave hi or bye bye.  He doesn't play appropriately with toys.  He may see a choo choo train and lick it or hit it on the ground instead of driving it.  He has very little verbal imitation.  Just this week he has started babbling dada sometimes when I ask him to say dada, which is HUGE!! He has no idea what dada is though and he won't imitate any other sounds.  He can't request things like his milk or food or diaper changes or to be held, he just cries.  He won't even point at objects he wants because he doesn't understand that pointing will get him the object.  He has no noun identification, which means he doesn't know what a book is or what a ball is or a clock or a flower or mommy or daddy, etc.  He doesn't have a pincer grip when picking up small objects.  He also only randomly responds to his name.  Most times when anyone but his dad or myself call his name he will completely not answer.  All of these are typical behaviors for a 22 month old to be able to easily do, but he can't.  It was good information to find out about him, but it was also a little sad.  I keep wondering when the whole autism thing will be just normal for us and not a big deal.  I know for most moms, it happens when they're children overcome most of their "behaviors".  I do find myself much more calm about it though, I don't fall apart when I hear test results like this.  I don't cry all the time or worry about Jacob.  Autism is just this new part of our lives.  I am slowly learning to accept it.  I think maybe it'll always be a little sad, though.  We all want our children to be "normal", but hey Jacob is extraordinary.  I am deciding tonight to rejoice in his differences and thank God for his autism and what it has brought to our lives and our family.  It has brought us closer to friends and family and caused us to make new friends we may not have otherwise.  It has definitely brought us closer to the Lord and increased our trust in God.  It has opened our eyes to a whole different world filled with children with disabilities and mommies with children with disabilities and how we need to help them and love on them and encourage them.  It has made us so thankful for our children and their health and appreciative of things we once took for granted.  Wow, what amazing things God is doing through one little baby!!

So, I have to shout out to all my friends who sent me emails and picture texts of how they did the "light it up blue" today.  Thank you so so much.  It seems like there will have to be more research on autism after the new rate of 1 in 88 was just released from the CDC.  I am hoping and praying something will be done.  Over a million kids are affected by autism! That is just crazy.  The good news is at this rate it won't be able to be ignored much longer.  Almost everyone knows someone in their family or a close friends affected by autism.  I am praying for some kind of answers for my little guy.  I think it would be great to know exactly what causes it, even if there wasn't a cure.  I think just knowing would be a relief.  Please pray for answers. 

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