September 1, 2017
Jack was born August 8, 2013 and he came to our home at the age of 2 months. My husband and I adopted our grandson, Jack when he was a little over a year old. Jack was an adorable child - sweet, cute as a button and immediately won our hearts. I recall placing his bassinet right next to my side of the bed, he was precious though rarely slept. I began noticing (having raised two children) that something seemed to be “off” concerning Jack’s development. He never made eye contact, was obsessed with spinning objects, rarely cried and never responded to his name (his hearing tested normal). As a baby, Jack went from “crawling” and I say that in quotes because he crawled in a most peculiar way- hands outstretched and legs stiff, but feet planted firmly on the floor. He chewed on everything- except food. Jack will only eat maybe 5-6 food items (he has been in eating therapy as well). He was particularly fond of wood so much so that he destroyed our dining room table – chewed on it like a little beaver 😊
Jack was diagnosed with Autism Spectrum when he was 14 months old. Then began the interventions- The therapy with early intervention, we also enrolled him into additional therapies as suggested such as speech and occupational therapy. The little baby was receiving hours upon hours of therapy every day from the time he was approximately 15 months old.
During this time, I noticed that at 2 years of age Jack could read. I told everyone, but because he is non-verbal it was difficult to prove. Until we had a speech therapist, Stephanie who tested my hypothesis. She began having him match items and his accuracy with matching the items to the spelled item was over 85%. We bought him tons of letters and he began spelling not just words but sentences- and signs that he had seen- logo’s, colors, shapes, states, numbers, etc. He loves puzzles, especially a rubics cube. If he doesn’t put it together it is because he does not want to, not because he can’t. We are also seeing signs that he may be able to read foreign languages and he has a propensity for music, as well. Not to mention he is more adept with an iPad/internet YouTube than most adults.
Jack is our unique little guy who prefers to feel enclosed, meaning he seeks stimulation from deep pressure. When he was an infant he would totally wrap himself in his blanket cover his head- I made a reference to him rolling himself like a burrito. This naturally caused concern because I feared suffocation. One of his Doctors suggested a sleep sack which is a baby/toddler version of a sleeping bag to keep him warm at night but prevent him from hurting himself. Jack also likes the sensation of tightness around his throat- so choking is always a concern.
Jack cannot be left alone- and Jack as he has been dubbed by doctors and therapists is an eloper, an escape artist, a runner, a sensory seeker… The modifications that we have made to our home are quite extensive and exhaustive. Jack also is dubbed a “problem solver,” so if he wants to do something he will find a way to accomplish the task... We have changed the door on the sensory room probably 5-6 times now, we have gone from low to higher gates and doors. Jack has a special feeding chair which we modified from a booster seat. He is about to flip that over so we are looking for something else.
Jack has been in 2 Parent Child Interaction Therapy courses which involve the entire family. These were to work on his behavior which is eloping, safety and transitioning which Jack has a difficult time with to the point of becoming extremely combative. Jack will bite, kick, scratch, pull hair, hit and my favorite! Go Limp-Dead weight. I can’t really say that those have helped I think he is just too young to understand the consequences and risks of his behavior.
This brings me to one valuable lesson that we have learned- I have always been an advocate for my children and all children, but I have yet to be put in a position where I have had to put on (as our BSE calls it my “Frisky Robin”) attitude when dealing with organizations that are supposed to have Jack’s best interest at the heart of what they proclaim. I have learned that there are institutions out there that take advantage of the situation, well-aware that they can because they think that you A. either don’t care B. Are uneducated enough on the subject that you put blind faith in what they say. C. So exhausted and/or overwhelmed that you do not question the course of action they recommend- which could simply be beneficial to their bottom line dollar…
I have supported Easterseals for years through our company CENTURY 21 Frontier Realty, never knowing that one day my family may need or benefit from this wonderful organization. In the few months that Jack has attended the school, we have seen such monumental changes, in not only his behavior but his eagerness to attend school. Jack has a limited vocabulary since he is considered non-verbal, but he is so excited to go to school every day that on the days that he doesn’t get to go he is one grumpy little guy. One day he was waiting patiently (as patiently as a 4-year-old can wait) outside the door for school which had not opened yet- he looked up at my daughter, his mother and said “I want school.”
That was his first spontaneous 3-word sentence. I am just so grateful to have found Easterseals and more to the point to realize that they have programs for autistic children. If I had known this I would have contacted them so much sooner. I can say first hand now that the care and concern for Jack’s progress; the teachers, therapists and support staff show to us as a family and to Jack far surpasses anything we have had to date. Most refreshing is that we don’t have to “fight” to get Jack what he needs to become the best that he can be- our BSE from wraparound Stephanie wasn’t aware of Easterseals for Autistic children either, but after being with us at the school, she is telling everyone about Easterseals as a resource for Autistic children.
Thank you from the bottom of our hearts and we look forward to Jack with the help of Easterseals reaching his goals and becoming a great contributor to society. He is so smart and just the best little guy ever! We love him so much and thank God every day that he is in our Jack.