When our walk down the autism path began the tunnel was so black and bleak, the future looked dark and dismal and I didn’t even know we were in the tunnel let alone seeing the light at the end of it. That was then………
….this is now. I can honestly look back now and say; even though they were the “days of autism hell” I wouldn’t even trade them in. Without the early struggle the later victories would never be this sweet! The attitude shift really began when we started to meet some of the angels in JR’s life. Beginning with the developmental pediatrician who diagnosed him; we finally had an answer and could move from there; up to and including an individual whom I probably will never meet.
Louis is an iPod/iPhone apps designer. Louis has 2 children on spectrum. Something I should have figured out on my own (sorry Louis) just based on the apps written. Louis has gone above and beyond; like all the angels who have directly or indirectly affected JR’s life in a positive way, no matter how large or small. There have been so many it is hard to remember them all…but I say a special prayer for them all. We have been most fortunate and blessed to have known some of the best people; not necessarily in their field; more in their souls. These people were “called” to do this. As parents we were called to protect the most vulnerable of society, these individuals were called to aide. The comparison is as parents we were drafted, these angels VOLUNTEERED! To me that says something about character and soul.
I have to begin with Vista staff on every level. A man with twins on spectrum saw a need in central PA and what started as a “wish list” later came to be known as Vista. Thank you Mike.
The real miracle though is in the classroom. From his first, Haley to his most recent, Jen; every one brought something unique to the experience. Not every year was great though. His only male teacher we saw less than stellar results. My son prefers the ladies. What can I say; like father like son! That teacher also moved on at the end of his first year.
His most recent teacher; also his former TSS, Shadow, Aide, file in the word, has had a very significant impact on JR. His second year at Vista 2 huge things occurred. Potty training (he was 7) and learning to swallow capsules so he could get the benefit of supplements. She headed both those projects. They took a long time to see results and the pill swallowing took forever to get rolling ( because of ineffective practices on the service provider level) and if I am not mistaken she did both at the SAME time!
Another that has had a huge a impact in JR’s life was Erin his behavioral consultant for 4 of JR’s 7 years at Vista. Outside of me, Erin knows JR better than anyone. We talked many times and to great lengths that there was no way a child with “cognitive delays” could be as conniving as what JR could and still can be. His fourth year at Vista the term was removed and replaced with “highly intelligent”. Erin has great intuitive insight into people in general but into our children in particular. It wouldn’t surprise me if there wasn’t an individual in her personal life with special needs.
Another would be the “other” Jen. She is JR’s SLP and was two years ago when we were starting out on his dynavox. Now we are beginning a new journey with the iPod touch. She is living up to her level of excellence and dedication not just to JR but all her other charges as well. Jen knows how to think outside the box. She has always been very enthusiastic about her work. She has the “calling” too. From personal experience and she so wants to aide these children in communication by whatever means is necessary. She is very high tech oriented (even though she doesn’t think so) and it is a common thread that she shares with JR. They understand each other that way.
Then there is Val; JR’s first TSS; Shadow, Aide, file in the word. She fast became a member of our family. We consider her another daughter. There is one other. Val taught us how to teach JR his first steps to independence. Learning to say no! At the time I didn’t think too far ahead to realize the negative effect it can sometimes have. LOL!! She taught him basic “daily functioning skills” (life skills) as well. But for me; she was someone I could talk to and learn from. I hope she has learned some things from me too. She only had JR that one year; but that year set the tone for his success for every year that came after it. Her second year at Vista she became a teacher of the older boys in the school. But she left before JR and her could be reunited in a classroom. Alas, a lose for both my son and my daughter.
There are others within the profession of evaluating (thank you Karen for listening) and accessing (thank you Lauren) who have been more of a benefit for me directly. These are individuals that I could sound off to and they listened. I felt heard. Living this life that isn’t always as easy as it seems. Even for me.
There have been so many others both professionals and parents who have had an impact on our lives. All I can say now is thank you all. May God bless and keep you all; always.