In 1992, when our son was born, the word autism meant little more to us than what was portrayed by actor Dustin Hoffman in the movie “Rain Man”. In spring of 1992, Ben was born and seemed to be a perfectly healthy baby boy. As time went on, it was apparent that he was not developing as expected. There were many sleepless nights trying to comfort a screaming baby. After a few months, he seemed to settle in, but was not progressing developmentally. He did not babble, his reflexes were slow, and he seemed to respond unusually to sensory stimuli (light, sound, touch, etc.). Other developmental milestones were late in coming: crawling, walking; and talking never came.
At 2 years and 3 months he was seen by a specialist who diagnosed him with PDD (pervasive developmental disorder) and ASD (autism spectrum disorder). At the time, we were relieved to have a diagnosis, but were unsure about Ben’s future. Would he ever talk? Would he go to school? Would he have relationships? What services might be available for him? Who do we turn to? Ben was assigned a case manager through the county and in-home services were started.
That was 19 years ago. Ben is now 21 years old and lives in a 24-hour waiver facility. He still cannot speak and has many challenging behaviors. It has been a long, hard road, but like every other parent, I am very proud of Ben’s accomplishments, many of which would not have been possible without the services he has received over the years and the undying dedication of those who have supported him.
Unfortunately, some of the people that support Ben come and go. The job they do is difficult and the pay they receive does not reflect the enormous responsibility that comes with it. Change is extremely difficult for Ben. And so the cycle begins and continues with staff coming and going, Ben’s behaviors escalating with the staff changes and so on and so on. With additional funding would come stability, predictability, and faces that Ben would not only trust, but could count on to be there for him. All of these things are so incredibly important for Ben to feel safe in his environment and for him to not only continue to live in his community, but to THRIVE there.
I am truly fearful for what Ben’s future would look like without services, and I fear that future is a strong possibility if the people that support him cannot make a living by doing the work.
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