Tuesday, August 3, 2010

Autism Diagnosis - August 3, 2010

It's been a while since we've had a Carson update and we have a lot to say so here it goes. Carson turned 23 months old on the 2nd of August. I can't believe we will be celebrating his 2nd birthday in less than a month!

I know we've talked a lot about his therapy sessions and special diet-- well, back at his 15 month check up, Dr. Bain suggested we schedule an appointment with a Developmental Specialist to determine how delayed Carson is and see if there is anything we need to diagnose. When I called the office to schedule the appointment they told me we would be on an eight month waiting list. I remember thinking to myself, "Okay, I'll put it on the calendar and if we need to go in eight months we will...but I bet everything will be worked out by then." Last week I checked the calendar and saw the appointment and knew we needed to go. Carson is doing really well. He has Occupational Therapy once a week, Developmental Therapy once a week, Speech Therapy twice a month and he sees a Chiropractor once a week. The Chiro is getting his fellowship in peds and neurology-- he's never done an "adjustment" on Carson. He is so much more than a Chiro. So, with 3-4 appointments a week and his special diet and supplements, we have started to see some great changes. The progress has been slow, but he is more interactive every day.
I asked the therapists and they all suggested I take him in for a formal evaluation. I absolutely believe that knowledge is power, so it really was a "why not."

The appointment went really well. Nathan was able to come with me (an act of God...but that's a different story-- he was supposed to be on a plane Monday but instead flew out directly after the appointment) and we spent 2.5 hours with a Pediatric Neurological Development doc. She was wonderful. She used two standardized tests to evaluate Carson. It was great to have Nathan's perspective and we were on the same page with our answers. Next, she spent time working with Carson (she gave him a crayon and watched his response, tested his fine motor skills, etc.) She also spent time watching him and let us share all of our concerns. Here's the bottom line:
Carson was diagnosed on the Autism spectrum as a mild case.
To help better understand where he fits on the spectrum, she gave us this scale:
1-29: normal/no signs of ASD (Autism Spectrum Disorder)
30-36.5: mild to moderate ASD
37+: severe ASD
Carson's score is: 33.5 (considered mild to moderate)
She said based on her evaluation she put him more on the mild than moderate side and also explained that these are evaluations and do not give a definitive answer like blood work gives. It all depends on what mood the child is in, etc. He was luckily in a great mood and did well at the evaluation. We felt like this was a very fair and thorough evaluation.

She said his language skills are at a 17 month level and his thinking & fine motor skills are at a 14.8 month level. This was actually better than I expected. I've been estimating more at the 12 month level, so as weird as this sounds, I was pleased with that result. He does show delays in all of the categories tested: speech, development, social interaction and fine motor.

So, this means we have a formal diagnosis. In a way I am relieved. I remember with all of Alex's testing there was so much up in the air. We had a lot of doubts and questions. We've suspected with Carson for a while now, so this was just justifying our fears & suspicions.

She suggested that we enroll Carson in ABA therapy (specialized therapy for children with ASD) and she suggested private speech therapy IN ADDITION to the therapy we are doing now. I have to admit, this is when I felt like breaking down (or maybe did shed a tear). HOW will we fit in MORE?! She said the ABA Therapy is "extremely time consuming." So like any female I started adding up my new job, current therapy, cooking all our GF foods and now this and started to panic. So, I would love some prayer in this aspect. We will do whatever it takes to make Carson his best.

Is this news devastating and heartbreaking? Of course it is, how could it not be! But, I have to say we have a pretty good handle on things. We are so thankful to see our 5 year old daughter excelling in everything she does. She's a "normal" kid (with our crazy personalities) but she's given me hope that Carson can and will live a great life. I remember asking God "Why?!" so many times during Alex's journey...and now I know why. She is our hope! Granted, Carson is far more severe than Alex was, but we are all over this and clearly have a lot of therapy and help on the way. I am thankful God has given me a job opportunity to help with these changes, too!

We confidently believe that Carson was given to us for a purpose, we believe he will be healed... that he WILL live an extraordinary life.

And all of God's people said, "AMEN!"

I will remain, confident in this, I will see the goodness of the Lord.


Rachel and Ian Kirkland said...

AMEN! I love that verse! So perfect! And, I am so glad to hear that the eval put Carson at an even higher ablity than you thought! That is awesome evidence that everything is working for him and is truly moving him along! You are the most amazing mother I know! I love you!

Shae said...

You guys - and especially your sweet little boy - will be in my prayers. My mom has a PhD in early childhood development and has done a lot of autism research, etc. She is a former elementary school principal and now a college professor - so you if you ever need to talk to anyone about the educational aspect feel free to email me and I will put you two in touch. You are such a good momma - your kiddos are so lucky to have you.

Sally said...

girl...am so so so glad ya'll got some answers...and honestly, it sounds so positive to me!!! i remain hopeful and excited for his future. he is going to (and already is!)a sweet, loving, intelligent (and Handsome...oww oww!!) lil boy with great things ahead in store for him, i just know it.

SO glad Nathan could go with you...just to be there and support you.
you are a stud mom. not much else i can say.

love ya, and am here for you.
I am so thankful for a decently positive diagnosis!!!!! god is good!!!