Susan Senator susansenator.com We had Nat’s ISP meeting today, which is basically an IEP for adults. Although there are fewer requirements for the service providers to fulfill for their clients, Nat’s service provider and also his dayhab/day program staff seem more than eager to outline comprehensive goals for him. Clearly charmed by his intense work ethic as well as his sudden smile and the occasional surprising flash of violet-blue Bambi eyes, his entire team wants to watch Nat soar. Everything I heard pre-22 told me that Autism Adulthood would be the dregs of the universe, but it has been the opposite for Nat. Yes, it is true that Nat has Priority One funding (because of occasional intense episodes of frustration that can become self-injurious) and so he has enough support in his life. He is lucky in that way, lucky in the way that would otherwise be considered unlucky, for…
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Susan Senator www.susansenator.com In 1993 when Nat was first diagnosed with Pervasive Developmental Disorder, (PDD) under the “Autism Umbrella,” I asked the doctor what do you do about that, what is the treatment? “Education,” he replied. He went on to tell me that no one really knew which approach was best, and that there were many schools of thought. “It is up to you to observe and figure out what works for Nat. When something is right for him, you’ll know,” he continued enigmatically. But I envisioned Nat at school — though back then I could barely picture that, he seemed so little and vulnerable — and this advice seemed wrong. He needed me, not school, I remember feeling. He would be bewildered by school. Lost. But the doctor was saying that he should actually be in school for as many hours as possible. (No one said “at least 30-40…
Susan Senator www.susansenator.com “Well, that was school. I learned a lot.” This is what my husband Ned once imagined our son Nat might be thinking as he rode home from his very first day of school, back in 1993. The school was located in a junior college in the adjacent town; it was a mixed-disability class, as well as having typically developing children. Ned told me that he had no idea what Nat might make of school — it was such a big concept to understand for a three year old, especially one with “Expressive Language Disorder and Autistic-Like Symptoms.” (This was his very first diagnosis; I almost like its quaint and evasive character, in the way that I can look back on almost anything from that long ago with fondness: awww, such a little innocent naive diagnosis.) Even though we prepared him with a Nat Book (known to most…
Susan Senator www.susansenator.com A new era has begun for me. All the past years I’ve been going to these state hearings on proposed cuts to special education in Massachusetts. I’ve been one parent out of many parents, professionals, and students protesting cuts to programs that have never been fully funded to begin with. But today I testified at a state hearing on Massachusetts’ proposed cuts to the Adult Foster Care program (AFC), the first time I’ve spoken as a parent on Nat’s behalf — for his adulthood. I’ve written recently about the AFC program, which is funded through MassHealth and Medicaid, about how this program is part of the new movement to keep those with disabilities in their communities and homes, rather than sending them to nursing homes and institutions; The part AFC plays is that it provides a small stipend to a caregiver (usually a parent, a foster parent,…
Susan Senator www.susansenator.com When Benj was a very little guy, he used to sit on my lap at the beach, holding on tight to some little palm-sized truck or being. He did not like to move from there. I was his base. He took a long time to get himself into the sand, and even longer to play in the waves the way he does now. It worried me, of course. All the other little kids were sitting on their fat, puffed-up diapers and digging, crying, yelling, laughing, pointing. Benj could do all of it; he just had to do it from my lap. I tried pushing him off, prying him loose, setting him down, showing him how to play, but generally, he preferred my cushiony self. Sweet Baby. But oh, God, was I worried. He wasn’t like Nat, but he wasn’t like Max. So what was he? He was…