Then and Now

How we got from his diagnosis to our current journey.

As we said Johnathan was 3 when he received his educational diagnosis and a year later he received his medical diagnosis of autism. We have met and worked with many doctors and service providers over the years. Here is a overview of some of the services he has received:

Johnathan had 4 months of early intervention services for speech and developmental therapy before turning 3. He then began attending an at-risk preschool for three years. He received occupational therapy, Speech, and ABA therapy while in attendance at the preschool. Unfortunately the school did not offer summer school services so for 3 years we searched for speech and OT services from outside providers. The first summer we went to our local hospital to continue Johnathan's speech therapy. This was a difficult experience as the therapist had a clinical student working with her. This student did not understand the structure of Johnathan's non-verbal tendencies and we saw a major regression in the little speech he had obtained. The following 2 summers we drove to Dekalb (a 50 minute drive each way) weekly to take both our boys to get speech therapy program there because of an outstanding therapist we had met. Then when we couldn't get back in there because all their appointments were filled (and they had a long waiting list) we had to seek services somewhere else. Next we began driving to Naperville (a hour and 20 minute drive each way) so Johnathan could get OT and speech therapy. This often led to long days for Johnathan (and us) and sometimes we couldn't get back to back appointment times and would have to wait between service times. Once Johnathan's school year started back up we had to end these services too because we were unable to schedule appointments that worked with our schedule due to the distance. We looked into so many leads to continue services for Johnathan but none ever worked out. As we continued to face summers with no services we saw continuous regressions in the little speech that Johnathan would gain during the school year.     

Jim:
Every now and then we'd learn of a new resource in our area, only to find out after exploring it further that he is too old for it, or it is not right for him. It is just so frustrating. There are parents that their biggest struggle is getting their kids to and from sports while here we are just trying to find something that can help our child. To keep him from hurting us and to just make it through a day with some normalcy. 

Michelle: Even now the frustration of Johnathan gaining speech only to lose it again and again hurts deeply. The number of times that strategies and ideas to help his speech were used and then taken back away due to summer or 'test' opportunities made it even harder. We would purchase I-Pad apps that would encourage speech but never given direction of how best to use them. We introduced PECS (Picture Exchange Communication System) but found it overwhelming by the large amounts of cards we had to pick from. When Johnathan was younger he'd use hand signs or pointing to express himself. Being with him constantly I learned a lot of his gestures so I could interpret what he was asking for. This was an uplifting time for me as a parent but the fact that I was the only ones that really knew them led to frustration for Johnathan when others couldn't understand. This led to undesirable behaviors such as incontrollable meltdowns and physical aggression.

Jim: Johnathan has issues with aggressive behaviors. These have gotten worse over time. It is now to a point that I am hit, kicked, head butted or pinched on a daily bases. This is taking a toll on me. I feel so helpless, I don't know where to turn for assistance with reducing this behavior. I have tried discussing in patient treatment for him, but Michelle is not respective to it when I bring that up. Then I have also not had much success with finding stuff to help. 

It has gotten so bad, that Johnathan now lashes out at me even while I am driving. This is limiting what we are able to do on top of everything else. I feel emotionally, mentally, and physically exhausted. 

Michelle:

We were blessed in July 2022 when Johnathan's speech teacher wrote a grant for Johnathan to receive a brand new I-Pad that included an app called TouchChat. The previous school year Johnathan had been introduced to the program through a preview trial the speech teacher used with him. Seeing a positive result with the program the choice was made to look into the use of it not only in the school setting but at home also. This app has been a game changer and has helped Johnathan build his vocabulary and use more speech. We are still learning how to best incorporate it into our day to day life though. Like it's hard to learn a new language when you are older it's hard for us to remember to encourage the use of the program when we are at home. Johnathan gets his 'talker' when asked but often we forget to ask and the behaviors increase because he wants to communicate but can't.