Wednesday, January 16, 2008

It's Official


Tristan had his appointment with the Developmental Specialist Pediatrician yesterday evening...this man was amazing with both him and Trinity. There was a 6-9 month wait for him and most other specialists, but upon me calling them last Friday and explaining our concern over the MRI and wanting a last minute 2nd opinion, they squeezed us in after hours. We filled out a bevvy of information, and he called us in. He played games with Tristan, observed him in play, did some non verbal tests, verbal / language tests, physical exam...and then, the diagnosis. High Functioning Autism. I have to say, eventhough I was pretty sure there was "something" it still a surprise to us. I feel a mixture of feelings, obviously I would wish that he did not have this disorder, but, he does, so wishing really doesn't help him much does it? On the other hand, knowing is better than not, so now we can really get the help he needs without wondering what or why he does certain things or doesn't. Today is the first day of the rest of our lives, we are going to focus on breaking the barrier. I am hopefull that we will get through and Tristan will have a great chance at living a "normal" life, whatever that may be! The doctor went on to explain that he scored very high on his non verbal IQ, that he is extremely intelligent, social, emotional and has appropriate eye contact. He thinks that it is mainly a language barrier of sorts (with some SID - sensory integration), and if we oversaturate him with language, speech and music therapy that the outlook is amazing. He was so happy that we came to see him and that we received a diagnosis so early (the earliest that he has ever given...that he ever knows of to date). The doctor also urged us to cancel the MRI. He said that they only prescribe this if there is a concern for mental retardation or cerebral palsy which he is certain that he has neither. He went on to explain that the risks outweigh the benefits, general anesthia is a tricky thing and that different kids respond differently. He has heard of children on the spectrum that have had the procedure with sedation that have actually regressed....We are going to schedule an EEG instead since Absence Seizures are a concern and those can DEFINITELY be measured on an EEG, which is a non invasive procedure!!!

My wish for Tristan is that he is treated equally. It pains me to think that someone will ever be mean to him, he is so sweet, so gentle, and because of this, so vunerable to the meanies. I am so tired of peoples obsession with perfection and their sick way of pointing out people's inadequecies and only hope that if this happens with Tristan, that I am there to put them in their place. When did the world become so heartless? I know that we have a long road ahead of us, but luckily, we have a really big bag of snacks, ton of tricks up our sleeves, and enough love to fill a small country to get us through it.

3 comments:

"Intentionally Katie" said...

Wow, Jenn, you must be feeling a flood of emotions. I'm so glad that you finally have an answer for your questions and that Tristan was diagnosed SO early! What a blessing that you are so in tune with your kids to have known that something didn't seem right. I look forward to reading about updates on his progress!

Stella said...

I left you a comment on your other blog.

Hugs!

Unknown said...

Oh wow Jenn. Good for you for getting him earlier than 6-9 months. That delay could have impeded his growth.

What is an absence seizure?

I completely understand what you are talking about when you say you want Tristan to be treated as an equal. Well, I understand, but in a different sort of way. You know my mom is a quadrapalegic due to her MS. She has been in a wheelchair since I was a toddler. I remember being a child walking through stores with my mom and having people stare and point or talk to her as though she was deaf or slow. My mom is one of the most intelligent people I know. It would break my heart to see her treated like that. It would anger me to see people look down at her. She took it all in stride, though. She always told me that people are afraid of the unknown so it is up to us to educate them.

You are his strongest advocate. I fully believe that you will be able to put anyone in their place who treats Tristan differently. Then, you will help to educate the offender so that it doesn't happen again to either Tristan or someone else. Shoot me off an email if you ever feel down. I'm a great listener!