Sunday, January 8, 2012

A mom's reflection on the past two years since diagnosis

This is my first time blogging, so bare with me please.
The past almost two years since Aiden has been diagnosed have been a rollercoaster ride. How did we handle getting the news of him being autistic, really well when you think about it. Our hearts did not break and our dreams were not shattered, but we did not jump for joy either. We just took it as another step. We knew something was going on, we were not naive or anything, we were just glad to have a definitive answer so that we could research and start the next step to our adventure. We started him in OT as soon as there was an opening, but then shortly afterwards we had to move to San Antonio, which was a huge change from everything we had known in Colorado Springs and before.
Did this move set us back, yes yes it did.
Were we discouraged, no, it just pushed us to make sure we got him into see the right people as soon as we got there. This then started our journey into the world of ABA therapy. It is a godsend, I personally believe it is what has helped Aiden out the most. All of his triumphs happened during ABA therapy first, and then only time would tell if he would generalize those skills to everyday life. Looking back now, a little over a year after he started ABA therapy, Aiden is a completely different child than he was back then. He is happier now, I get to see him smile all of the time almost.
Some would ask if I was ever worried about Scott also being on the spectrum. I would have to say that yes, the thought was always in the back of my mind, but I did not fret about it that often because at the time Scott was doing things that Aiden was still working on. Aiden had stopped walking when we first moved to SA, Scott started walking before Aiden started back up, and he was just nine months old at the time. That's really young to be walking. Scott hit all of his milestones well ahead of when he should have, most parents would be proud about that, and I was, but I was also secretly afraid, because that would also mean that he has farther to fall when he starts to regress.
We tried to keep that from happening, whenever one of Aiden's OT or ST's would give me some "homework" to work on with Aiden, I would use it for Scott to. It worked out great since they were both functioning at the same level. I would also work side by side with Aiden's ABA therapist for Scott, mainly so that I had something to do while she was at the house, but also because I was still slightly afraid for Scott. That is why I worked so hard on getting Scott to make eye contact, that is the one thing that Aiden did before Scott.
That is also what is biting us in the butt at the moment. Scott finally fell, and fall he did. Scott was doing so great, he was talking in one word sentences like he was suppose to, he would socialize with others, as long as Mommy was right there. The minute I would go out of the room, the screaming and tantrums would start and continue until I came back, no matter if it was just for five minutes of two hours. That's when I started to really get worried.
But when we had him evaluated at 18 months, he got the diagnosis of social anxiety. I could handle that, we were suppose to see a psychologist for him, but she never set up the appointments and would never return my calls. Then we got word we were moving again, just after we got told we would be staying in SA.
That was heartbreaking, but the move this time was not so bad. Aiden did not regress when we moved, we worked with him the whole way and he kept most of his skills. It did take us a little while longer this time to get his services started up, but up and going they are, and he is doing great. I absolutely love his ABA therapists, they are amazing women and I cannot think them enough for what they are giving us.
Scott on the other hand, stopped talking, he started having tantrums where he bangs his head on the floor, he hates loud noises and will bang his head on the wall when I vacuum or have the dishwasher on. He also started to make sure things are in lines, perfect neat lines, sorted by color, size, or number. That is why his favorite toys are trains, they stay in lines, they follow lines, that are perfect for his OCD.
But that's the problem, because he technically plays "appropriately" with them, when in reality, they allow him to not get upset every five minutes when Aiden knocks over his perfectly sorted blocks. Scott is also having a lot of sensory problems, too. He use to not care about the feel of his clothes or of his diapers, but now he will not let us come within five feet of him with a disposable diaper, so we switched to cloth and he lays down for us and lets us change him. He will not let us put clothes on him, but we have found that he loves Eric's socks, he wears them as his pants. I know it looks weird, but hey that's us, we're the weird family.
When we took Scott to see the Developmentalist on post, he said that his OCD like tendencies are typical two year old behavior, that his lack of speech is just there, that he is social enough, and that since he has great eye contact he's not worried until he's able to test Scott's cognitive abilities at the age of five.
I'm sorry, what did you say. That's right this doctor still seems to think that eye contact is still a defining symptom of Autism and that he has to be mentally retarded to be on the spectrum.
Sorry but no, over half of the children who are diagnosed on the spectrum have impeccable eye contact, because they were trained by their therapists and parents to have it. And most kids on the spectrum have an above average IQ, look at pretty much all of the famous ASDs. Heck meet Scott's older brother Aiden, who is three and knows his alphabet forwards, backwards, and inside out; who can count up to 30, can write his own name, knows all of his colors and shapes, knows just about every animal out there, and is starting to teach himself how to read. That's right I said teach himself, because neither me nor his therapist are working with him on that and I caught him the other day reading a few words out of his Dr Seuss book. His mind is truly amazing and anyone who still thinks that if someone is on the spectrum then they are mentally retarded, then they haven't met my son yet, and they won't know what hit them when they do.
So after that horrifying appointment with the developmentalist who still hasn't caught up with the new research on ASDs, we talked to Aiden's ABA therapists. They are all very concerned about Scott and they assured me that getting a second opinion is a very good idea. So we got the new referral and we got put on the 6-9 month waitlist to see the Seattle Autsim Clinic. We thought we were doing good with that, until 15 minutes after I got him on the waitlist we got a call saying there was a cancellation and we had an appointment within the week.
I don't think I have ever jumped for joy before, but I sure did that day, and that was only a week ago.
We went and saw their intake nurse and she assured us that Scott has some concerning areas, in all three diagnostic categories. She referred us to a research study that is looking at the link between autism and the attention to and control of emotions and social development. She felt they could get him in to be evaluated sooner than her clinic could, and they use the same psychologist as them for their evaluations.
She was right, Scott has his evaluation set for next week, I'm excited and scared for him. I know this will be a good thing because we can get him diagnosed and get him started in the therapies that will help him. Heck we already have therapists jumping over one another to work with him, we just need the diagnosis so that insurance will allow it.
I know that makes me sound like I am wanting Scott to be autistic, and its not that. I just know my child and I know that he needs ABA to help him with his anxieties and social problems. I'm just doing what I can to get him there. And I blame myself for him not being blatantly obviously there, because I did therapies with him, I worked with him to get him where he is. That has helped keep him from regressing any further than he has.
And when he gets the diagnosis, that will make my days even busier.
Right now I am having enough trouble juggling Aiden's OT, ST, 20 hours a week of ABA, plus him starting school this week. Then we are making weekly trips to Seattle for Scott for the research study and to get him diagnosed, and i will have to add Scott's ST, OT, and 20 hours of ABA onto that. Which alone will be making my head spin, let alone me trying to get my school work done, which reminds me, I start my bachelor's program the end of February.
This is going to be one incredibly crazy year.
This weekend has been a crazy one.
I should have added empathy to Aiden's strengths earlier.
Friday, I was sick, I had stuff coming out of everywhere and it wouldn't stop so Eric had to take me to the ER. While he was getting the boys dressed, seeing as it was past their bedtime when all this started, Aiden came and looked me right in the eye and said, "mommy sick, mommy get better, mommy okay." He was so worried about me, it made me cry, it made me okay with going to the hospital, I hate doctors (I'm okay with yelling at them about the boys but when it comes to myself, I just prefer not to see them, they never have any good news). After spending 4 hours in the ER and taking in 3 liters of fluids and who knows how many meds, they let me come home. I had at least stopped volcanoeing. Aiden was still worried when I got out to the car, he kept telling Eric that "mommy sick, mommy no feel good, mommy get better"
I was proud of my little guy, even if I did not feel well, I was proud.
Now both Aiden and Scott are sick with me. We were all watching Thomas the Train this evening on the couch. The fact that they both were laying on my for the entire length of the show says they were not feeling well. But Aiden showed his empathy yet again in worrying about Scott when he fell asleep. Aiden covered Scott up and told him to, "get better misser fisser" and then Aiden went and laid down and covered himself up and fell asleep. I couldn't be a prouder mom. My boys might not be conventional, or "normal," but really what is? My house looks like a therapist's dream home, as said by all of Aiden's ABA and visiting ABA therapists. But its mine and I wouldn't change it for the world.


  1. Incredible! Looking forward to reading more.

  2. My Mom told me about your blog. She found it through
    She said out of all of these amazing posts, there were so few comments.
    She knew I couldn't help but comment. :)
    I have a 7 year old son and a 5 year old son. My 5 year old is Autistic.
    So far I am amazed by your boys. I have a lot more posts to get thru but I am so excited to read them!
    Thank you for sharing your life and journey with me.