Sunday, December 11, 2011

Another Official Diagnosis

This past Wednesday, December 7th, Josh had another evaluation. This was with a psychologist through Children With Special Health Care Needs (CSHCN). We have been waiting for a couple months for this appointment. We were having Josh evaluated for Autism or any other behavioral disorder. His Genetics Doc really pushed for this after our last appointment. 6 weeks ago I filled out several questionnaires and evaluations for Josh and mailed them to Salt Lake to be scored so they would be ready for this appointment. Josh's preschool teacher also did the same thing. I was really nervous that we would not be able to leave this eval with our diagnosis. You never know how Josh is going to be at any given time.

But I was worried for nothing. This appointment went so well I could not believe it. Josh cooperated PERFECTLY. He was 100% himself so she got an extremely accurate eval of him. He did not throw any meltdowns during the process so we were able to move through and get it done in about 2 hours. (He did throw a meltdown as we were leaving with head banging and everything so she did get to see that too..)

So....what was the outcome? Autism.

I was surprised where he scored though. In the official eval the doctor did there is two categories: Autism and Autism Spectrum Disorder. When we first met her and began the eval she thought he would probably be on the Autism Spectrum Disorder category. But as the eval went on and she began to score it at the end, he fell in the Autism category instead.

She was a wonderful doctor and I actually learned several things in that 2 1/2 hours about Autism. I am so glad to have her join our team of doctors for Josh. I can see that she is very knowledgeable and wants to help as much as possible.

So now the hard work begins.

Josh has had no intervention for Autism at all. I am currently battling the school district about his speech problems. As some of you may know.... the speech therapist at his preschool and I don't see eye to eye at all. I don't think she really wants to even try to work with Josh. I recently (finally) had Josh evaluated with the augmentative team through the district for a communication device of some sort. Their conclusion was that he does not need anything and instead Scott and I need to learn about PECS... which is comical. We have been doing PECS for over a year with him already. I did them with Trevor. Believe me.... I know how to do PECS. They aren't helping. The funny thing is... every single doctor, therapist ect that we see for Josh is STRESSING that he needs something to help him. Pretty much everyone is telling us that an iPad is the way to go. I am so tired of hearing this! I know how much he needs an iPad.... we just can't afford to get him one.

I am feeling alot of relief and anxiety about Josh's diagnosis. I feel relief because now we know. Someone who is an expert was able to tell me 'YES your child had Autism'. I have been on the fence about this for awhile. But now the anxiety is setting in. I know that pretty much the school system is failing Josh. I know that he needs some very specific programs and interventions to help him succeed. I am so sad because I don't really have anywhere that is specific to Autism to take him to now. He is too old for the preschool programs and that is all we have around here. I feel the weight of the world knowing that I am going most likely be left to figure out how to do this. I need to take on being his therapist, interventionalist, ect. I feel the weight of all this on my shoulders and I don't know how I am going to do this. It is going to take alot of research and time to figure out what to do to help him. He is so far behind academically. He does not know colors, numbers, letters, shapes, ect. Even without him being able to speak... if not for the autism he would be able to learn these things. But he is so far behind it overwhelms me.

So as soon as the holidays are over... I am going to begin figuring out what to do. I will do what it will take to help him learn and grow. It will take more time than I have been able to spend with him... but somehow or another I will find the time. I know I will. He is such a sweet boy that has had more struggles in his short 4 1/2 years that many people will have in a lifetime. But I will be his advocate and I will do what it takes.

In the meantime... here is a couple pictures of my sweet boy. I don't know why he happened to have his coat on in both pictures.....

And speaking of Autism.... here is my two special boys. These two have always had a bond that is different than anything I have ever seen. Isn't that interesting?


Montay said...
This comment has been removed by the author.
Montay said...

You do have ALOT on your plate. You are a strong woman and a AWESOME mom. Keep your head up and know that there is a plan.
"When doubts arise when tragedies strike, the quite voice of faith is heard in the stillness of the night as certain and as reasurring as the polar star in the heavens above." President Hinckley
Hold close to your heart that Heavenly Father let him choose you as his mother because he knows best. It ok not to have all the answers. You are trying thats all he asks. I know you dont know me well but, my family prays for yours, I hope you feel those prayers for peace in your heart. You are my inspiration to try harder to do a little better each day.

Tanya said...

Wow. I am so glad you have answers, and great doctors on your side! I am so sorry about the school system. You are a pro at researching for your kids, I am confident you'll find the answers you need for Josh too. Good luck, and you are always in our prayers.

Katherine said...

Is it strange that I love to hear the determination in a mom's voice after she finally has a diagnosis? The ability a diagnosis gives a mom to find direction and take charge is amazing. And I know, you of all people, can do this. You can figure out what is best and even better, you will do it. I have always looked up to you and how well you handle all of the medical stuff with such grace. I believe in you.