Saturday, May 12, 2012

Year in Review Part 5

Let me preface this by saying that this review is somewhat chronological, but, like any good tv show or movie, there are moments of flashback. Here is one such moment.
Cameron has his diagnosis at this point. It is the end of August. A lot has gone on in the past month. He has welcomed a new brother, turned 2, therapies have been increased, another type of therapy has been brought on board... occupational therapy. So, here's your flashback....

I am still having a hard time pinpointing if there was ever an exact moment when my son changed.... Here he is as a small baby... roughly the same age as my youngest, Casey is now. He's about 10 months old pictured here. I can go back and watch videos of him. He was engaged. happy, made great eye contact, pointed...babbled ALL of the time... the only thing a little off.... Hand flapping or wrist rolling. Arms out to the side and rolling of the wrists...  With him being my first child, a just naturally assumed that he was doing this to sort out things and get his balance correct. I figured... he is just learning to stand and walk... yea, maybe that's it...he will get better as his muscles get better at this walking thing...: /

At around 11 months, he took his first steps. He was also in Mommy and Me swim. He LOVED swimming. He could do a full submersion, kick and paddle by the time summer was up. We went 5 days a week for 4 weeks to swim lessons. He was VERY advanced, and even the director of aquatics saw this and noted it. They loved him! 

At his birthday party, he didn't like the number of people in our house and wanted nothing to do with ANY activity, cake, presents or otherwise. He wanted to swim. So, off to the kiddie pool he went. He loved to splash. More of the hand stuff....

By this time, he had a few words... mom, dada, and dog, although it sounded like doc. lol. 
By his 15 month check up, there was some cause for concern. He had about 10 words total, but then he seemed to lose them all. This was also around the same time that he got really sick. He ran his highest fever ever at nearly 104 degrees. 

 My mom mainly told me that she thought he had autism signs. I was told this every day I saw her until finally, I agreed to talk to the doctor and get an evaluation.  In Feb. of 2011, he had he initial visit. A speech therapist came and a case manager. I asked them point blank... he doesn't show signs of autism, does he? At that time, they could tell I was a little bit defensive, so they simply said, not that we can see yet. they did say though that they would offer speech services so they can help him with a strong language foundation... I figured, of course... I want the best for my kid. He's gonna be smart!

 Later on, I would learn that they spotted it within 2 minutes of interaction with him. 120 seconds. It was just that obvious. It would be several therapy sessions and months before I would even consider it. They told me to have his hearing evaluated since he had a lot of ear infections, just to make sure. So, we did 2 months later. Even the hearing clinic knew it. I didn't realize the eggshells these people had to walk on around me. I was a "Warrior Mom", and my precious wasn't "wrong", THEY were. They put him in a weighted vest for the hearing eval. Once medical issues were ruled out, they suggested that something else may be at work and that they would like to have a behavioral specialist come out to evaluate. I figured... ok, it is just protocol... they are going to come back and realize that he is well behaved and that I am not the kind of mom who neglects her child and the child acts out because of a poor upbringing. I was used to things coming back "results inconclusive" at that point... Afterall, they never did figure out why it took 3 years to get pregnant with him.  So, they schedule the appointment. A month later, she arrives with the case manager and the speech therapist. She introduced herself, handed me her business card, and got down to business. A few minutes in, I look at her business card. WHAT a Psychologist? What did I agree to? My kid is being looked at by a Psychologist!? I was kinda mad, kinda in shock, but I wasn't gonna say a word during the appointment. At that point, I kinda felt like I would let them leave, talk to my husband about this, and that this would be the last time I let the whole program into my home. How dare they?
By the end of the evaluation, they told me, we gave him a common screening test called the MCHAT. It checks for early signs of autism, since you had mentioned that you wanted to rule this out. I was kinda not so mad at them at that moment. I was like FINALLY... I can give my mom some proof and shut her up. Seriously, the topic of conversation with her was always... autism this.. autism that... your sister in law says this about him... she works with special needs kids you know...  I didn't like my mom confiding in other people about my sons flaws or faults. Especially an in law... a NEW in law at that. I had known her less than a year. I didn't trust the opinions of a "new" family member farther than I could throw her. Who is she to tell me about my son? Like she knows him better than I do as a stay at home mom... She's a 21 year old minimum wage assistant in the special ed department of a high school and she has worked there for what, 2 months? I wasn't apt to trust in a person with a doctoral degree and 15 years experience either at that point. I was Mom, and I knew best. I felt all sorts of violated and angry at my family. 

So, when they went over the results, basically, I was told that yea, he failed 3 out of 5 critical areas, meaning his odds are pretty darn good at having autism... WHAT? She couldn't give me an official diagnosis, but here was a list of specialists..... sigh. I had not even really read up on the subject, so shortly after that, I felt compelled to Google it... maybe I was wrong on what autism is... I found out a small amount and hoped that he would just have asperger's and just be "quirky" and smart... because I already knew he was smart. I didn't delve into too much detail and learn that most with aspergers have exceptional verbal skills.... I think I was frightened by what I may find and what I may learn. I wanted to be blissfully ignorant. Now hits the first stage of a grief process. DENIAL. Besides the small summary and reading on what the MCHAT was, and what the early signs were, I stopped my research. A part of me was holding out hope that they couldn't give me an official diagnosis because they _____ "fill in the blank" reason here. 

I actually think the few months between the MCHAT and the private evaluation gave me the time to come to terms with things. By the time the evaluation rolled around, I had gained enough strength and confidence to do more research, learn what they would be doing as far as testing was concerned, and to go in with my eyes wide open. It was a new attitude. Bringing my husband on board was a bit of a different matter. 
The BEST thing we did for our marriage and for my husband to accept diagnosis was to reach out. His father gave us a book... Not my Boy! by Rodney Peete. He is a famous retired football player and husband to Holly Robinson Peete, an actress who at the moment was a co host on The View with Barbara Walters. My husband read it in about a week. Every day, I saw my husband come to terms with things. He seemed to handle it much better than me, and I can only think that it is due to reading about autism affecting a family from a man's point of view. It was also then that I found out other famous people who have children on the spectrum. 

For example: Doug Flutie, John Travolta, Tommy Hilfiger, Dan Marino, Toni Braxton, Sylvester Stallone, Edward Asner, Steven Stills, Tisha Campbell-Martin, Jenny McCarthy... although poor Jenny's son was later found NOT to have an Autism Spectrum Disorder at all... I am not even going to delve into her philosophies on how she "cured" her child. I do encourage those out there to do your own research and come to your own conclusions.