So, with it being April, Autism Awareness Month, and our big exciting and terrifying experience we will be going through in early May, (to catch up anyone, my son is receiving a Service Companion dog from CCI- it's been an almost 2 year process and he was selected- it will be so amazing for him)
and with all the prep work, and paperwork I have had to fill out prior to us arriving at the Northwest Headquarters for CCI I have also had to go through our application, which was really lengthy, but reading back from 19 months ago,
it has also given me perspective. For example, Ty was not getting himself dress during this time of me filling out the application- he needed A LOT of assistance, now he gets himself dressed by himself for the most part (he needs help with his jammies, something about them he still struggles with- but that's okay, he'll get it sometime)
It's quite amazing to look back and although we know he's worked really hard, and he has made tremendous progress, it's also easy to lose sight of how far he really has come- and get focused and lost more in the behaviors we still experience
So in honor of my little guy, and all the difficulties he has had to over come in his 9 years on this planet, and to respect his differences and to know we have a lot to learn from him,
to continue to guide him, but step back and also watch him lead when he is able.
In this application process, I had to put together a pretty lengthy biography of Ty and what life is like.
Re-reading it today almost brought me to tears, because it is so easy to forget where he was even less then 2 years ago, and then to think back 5 years ago, and all the way back to infancy.
It's certainly been a very rough road we've been down with this little guy- from the beginning, and it's very emotional to know (as small as it may seem to many) the incredible challenges he has overcome, and continues to overcome every single day.
I am so thrilled that this organization has selected him to receive the amazing gift of a service companion- because as we always told him, we would continue to do everything in our power to help him, support him, and get the necessary assistance for him, no matter what!
And this service dog will make such an incredible life changing experience and benefit him so much, I am just so excited for him.
So with that, I'm going to give a few paragraphs every day of this letter I wrote on behalf of Ty to CCI. It's his life story in a nutshell (if that's even possible)
It is our call to continue to help him and get help for him whenever we can- and this service dog is going to be a benefit to his life like nothing else has been so far-
"Our son Ty has been diagnosed with Autism with ADHD, Mood-Disorder (NOS), PTSD, and Bowel Motility disorder requiring an external cecostomy in his colon. He also has asthma, food allergies - Wheat/gluten and dairy, and reflux. He is on numerous medications to help him get through his day, which even on the best of days is very difficult. He struggles with severe outburts, property destruction, lots of frustration, and lacks effective communication skills to convey his needs/wants/frustrations. He also lacks coping skills. He struggles with eating and sleeping. The more dysregulated he is, the more difficult these issues become.
He has suffered with chronic pain since he was an infant- he has been through colonoscopy's, endoscopy's, numerous invasive bowel clean outs in the hospital -always lasting 4 to 5 days, and even up to 10 days which that visit resulted in his cecostomy being put in place. He has to go every few months for bowel x-rays and cecostomy button exchange. He still has to have bowel clean outs a few times a year, despite the cecostomy in place. His sensory issues are so debilitating that when he was 5, he stopped eating food because food smelled and looked too gross- he went to feeding therapy for a period of time and that's when he began OT to help with his sensory issues as well as his very low muscle tone and many activities of daily living which he was not able to perform for his age, including toilet training until he was 5 1/2.
He struggles with sleeping, and still takes daily naps to help regulate his system (he's 8). Every day is hard for him. We discovered a long time ago that staying home, no transitions, changes, a lot of calming activities (through his sensory diet) help him tremendously- even helps him begin to try to engage with his family. He tantrums less, he is less destructive, he is happier and smiles, he eats a little more regularly (eve if it's potato chips, we go for calories), and he sleeps better. He still sleeps with my husband. Every attempt we try has failed for Ty to sleep on his own. He cannot regulate his body during sleep and my husband's presence helps regulate him to falls asleep and stay asleep."
There is the first part of my letter biography for CCI. I will post more tomorrow and a little every day. It's our story, it's his story, it's what life is like for him (and still this is only what we have figured out and observed and learned from the experts- because in reality-
Only Ty knows what it is like to be Ty. The rest of us are just guessing!
