Every once and a while usually like three to four times a year I like to take a time out from “hard writing” and just update all the people how Aiden is doing in a general no editing, not caring how great the grammar is kind of post. So please indulge me for a moment as with Aiden being the main subject and the inspiration for most of my posts I find it is sometimes important to take a step back and just reflect on him.
He is ten years old now and seems to be fairing quite well. We have backed off on ABA (applied behavioral analysis) not due to our own choice but due to certain happenstances in our therapy team. Apparently, once a kid declines that signals the therapist to run… You see, Aiden is a good kid, hes not violent and even though he is listed as severe on the spectrum he loves to work in therapy. When we started therapy with this company Aiden was fully potty trained (even at night) which was a feat let me tell you. It took me three days of locking up us in the bathroom to get him potty trained because… well… that was the only option I had. He was 8 and i was desperate. Fast forward to today and we are seeing urine accidents multiple times daily and apparently the therapists that we were working out were so put out by this the found it imperative to send an email threatening to end services if the issue was not resolved. Suffice it to say, that I was angry at this and decided this was no longer the right company for us. I mean, if the therapist who is only here six hours a week (because there are multiple therapists who split the 25 hours for behavior generalization purposes) is choosing to bail when things get just a little hard or uncomfortable then I’m choosing to say “I’m m here 24/7 if you cant handle six when things are just a little bit tough see ya! Ill take it from here. I dont need your judgment on top of his behaviors. and obviously you are more worried about your ‘comfort’ than his care”
Anyway, with the culmination ABA in the last weeks and another company waiting in the wings it could be about six to eight weeks before we begin therapy again. I’m frustrated at this because we had just met our deductible and thus we are wasting the rest of our yearly benefits just waiting but I’m also excited to get a break from strangers and therapists constantly being in our house nit picking my every move reminding me that something I say or do with my kid isn’t therapeutic or could be done another way. sometimes I just wanna say, “So what if he is sucking his thumb and sitting on my lap at 5pm in the afternoon hes still my kid autism and all”.
A few weeks ago we visited a pediatrician that specializes in all things autism and I have to say that I walked out of that appointment rejuvenated not because I had any really solid answers but because I felt like I had finally found someone on the professional side that finally believed me. Did aiden have signs of autism before his diagnosis? … yes. he was a quiet baby. He never cried really and he could watch nemo on repeat for hours without ever needing anything. However, as a toddler he met all milestones on time, sat up, crawled, walked and even talked on time. He would seek out attention and play with toys that didn’t have buttons. But then, The MMR round of vaccines hit. one week later, Silence. all he did was play with toys with buttons. The obsession with technology began and that look in his eyes was no longer warmth but distance. He lost every word and would not begin talking again until he was 7 and even now at 10 the words are few and far between often requiring prompting. Eye contact is fleeting at best and his desire for interaction stops at having his needs met. So what was different about this physician was that she was the first one to believe us. She stopped me mid regression story and looked at me and said, “You don’t have to convince me… Im a believer”, she said with a pained look in her face. She sent us off with the same recommendations as the rest of the doctors and no real direction on how to get them though she did get us set up with speech therapy to get him connected with a speech therapist that specializes in Assistive communication devices. She also sent us on our way with multiple prescriptions for blood work to check his Titers which might give us some insight into the vaccine end of things. Though it cannot deduce with 100% efficacy a vaccine injury it can give us some direction into how to proceed. The doctor also sent us off with a questionnaire to check for ADD like symptoms. In her short time for working with him she was able to see his intelligence but his ability to attend to the task was quite limited. This behavior was not new to my in my observations of him but she offered a bit more insight convincing me that the medication would not effect his kidneys which is all I needed to hear to sway my decision on medications. (as Aiden only has one functioning kidney)
Aiden is still enjoying his Sunday visits to Church and buffalo wild wings. This is the one thing that he looks forward to every week. His teacher taught him to sing the national Anthem and he has been enjoying the quiet time with therapy being on hiatus. The urinary accidents have him back in pull-ups which is the downside in all of this but I think with some patience and people who love him we can get past this. Til then the amount of laundry I have been doing is unfathomable. I may need to go back to charting his toilieting behaviors ever half hour until this all get resolved. I did go to the medical side of things and had them rule out all things medical. there is no Diabetes, no kidney issues and no Urinary tract infection. As the doctor gave me the good news and said “my work here is done” I just smiled and said, “well, thats good news and all but don’t get me wrong this is where my work begins” he smiled back and me and said, “good luck to you”.
I just wish I knew what happened to cause the decline in behavior. I mean, there has been no other negative behavior but this. His hand-biting is improved and he even seems a lot more alert and connected with us. If it weren’t for the Urinary issues the world would be great.
We still can’t take Aiden to stores with Dvds. he still throws himself on the floor and it seems all stores have Dvds. One would think they would be obsolete by now. I always feel sad whenever I pass an old empty blockbuster store I always wanted to take him to one so we could rent a movie. Now that would be an amazing adventure with this guy. It would be like in the movie Clerks when Randal walks into the video store and falls to his knees in amazement at the video store before him. One day, when I find an open video store, this will come to be.
As of now, from my point of view life in our little Autism world seems to be in transition. The last few months have been tough emotionally with therapy being less than par and the therapeutic relationship falling short of what it should have been but as they are phasing out I can feel the stress and tension starting to depleate. I am hopeful that things will improve with the next company and looking forward to having aiden in school for five days a week like a normal parent until therapy gets up and running again. Lord knows I could use some more time to get the house and my affairs in order. I also wouldn’t mind meeting my husband for lunch once our twice because Detroit at lunch time is amazing. Food Trucks and all!!
Last but not least. I want to once again thank everyone who continues to follow us on our journey and cheer us on. I want to thank you all for your phone calls, your stopping by, the impromptu bonfires in my back yard and for sharing your children with me and my kids when we cant get out of the house. I want to thank the local coffee shop I frequent for being a safe place for Aiden and I can go when we just need a change of scenery and to all of those who pray for us. We cant do this without our tribe and we are so blessed to have all of you.