When I entered Lil D’s classroom to pick him up the other day, Sanjay* immediately turned around in his study carrel and called out to me: “Mrs. Ali, Mrs. Ali! If Lil D hits himself, will you be mad?”
“No, Sanjay, I won’t be mad.”
“Mrs. Ali, Mrs. Ali, if Lil D hits one of his friends, will you be mad?”
“No Sanjay, I won’t be mad. But I’ll tell him that it’s not nice to hit.”
“Mrs. Ali, Mrs. Ali, if Lil D hits one of the teachers, will you be mad?”
“No, Sanjay, I won’t be mad. I’ll be upset, and I’ll tell him it’s not nice to hit and that he shouldn’t do that.”
Satisfied with my answers, Sanjay turned around. I’ve been going to Lil D’s class a LOT lately – to help out when he has prolonged meltdowns and self-injurious behavior (SiBs), to check in, and to pick him up after school (since most late afternoons he is behaving “edgy” prior to ready for the bus ride home). The past several months, when I enter the classroom, Sanjay asks me the exact same series of questions, no matter what he is doing when I walk in.
I know Lil D’s past several months of meltdowns, SiBs, and crying spells have affected his classmates. Though Sanjay is the only one who consistently asks, I’m pretty sure the other students are concerned or bothered by it. Recently when I walked in, one student piped up, “Mrs. Ali, Lil D was pretty happy today!” I could tell it was a big deal.
They’re quite a band of brothers (and sisters), this group of kids. While I worry every day about sending Lil D out into the world, about the potential for verbal and physical abuse out there and his inability to tell me anything about his day, his thoughts, his feelings, his triumphs, his hurts, I know that we are one of the lucky families. We are in a school that places a high premium on inclusion of their special needs students with the “neurotypical” kids. We have a principal who is fairly open-minded. (Though we have butted heads in the past, when things really took a turn for the worse for Lil D, she clearly advocated for his best interests.) And, we have an autism teacher and aides who regularly communicate with us and welcomes us to visit the classroom.
There are a lot of stories out there about authority figures who abuse special needs children. I highlighted several stories last week in my post on trust and the autistic child. Several friends of mine with autistic children have shared their personal stories of problems with their kids’ teachers and administrators: withholding of information, general neglect of their child’s special needs and outright lies about what goes on in the classroom. I personally know parents who have been stonewalled by their teachers, barred from visiting the classroom due to arbitrary (and misquoted) school county rules.It’s enough to make any parent of a special needs child constantly suspicious and distrustful. When your child can’t speak for himself – literally or figuratively — then how do you really know they are being properly taught and cared for? After I published that post last week, some moms told me they never trust the authority figures or the world at large – that trust doesn’t exist. Others told me that the only thing I can do is put my trust in God — that He will watch out for my child. I try to trust God. But, it doesn’t bring me the comfort I seek. Perhaps my faith is weak. Well, I know my faith is weak.
But, what I do know is that we are lucky. There are good teachers, aides, and therapists out there who are going to the bat for our children. I have had such teachers and therapists for Lil D, and we are in a school where, for the most part, they are trying their best with my son. (I say for the most part, because my standards of care and education for Lil D are extremely high – what mother wouldn’t have the highest demands upon those who are teaching and caring for their children?)
His teacher and I have been on constant daily communication with each other via notes, emails, and phone calls over the past several months, with the escalation of problems and behaviors. We have met several times to come up with behavior plans, adjust his IEP (individualized education plan), and generally puzzle through the tornado of behaviors and emotions Lil D is enduring. We talk with his school-appointed occupational therapist to figure out how to address his sensory needs, we share notes on how the function of his behaviors change and what is working that week, and she calls me daily in the afternoon to discuss if he should ride the bus home.
What teacher does that? All teachers should be that dedicated to their students. It should be the norm, not the exception. This, on top of the seven other autistic students she and her classroom of aides teach and attend to. I know this current situation with Lil D hasn’t been easy on anyone. Sanjay’s comments to me when I come to the class are a testament to that.
Lil D is graduating from elementary school in five weeks. We move on to the next chapter in his schooling, and it scares the crap out of me. We’ve spent five years developing a relationship with his teachers and administrators, with the kids who do “lunch bunch” with Lil D, with the entire school community. We have had our difficulties over the years, and we have been at odds, and I have shed tears and expressed frustration. But, we are one of the lucky ones.
It’s Teacher Appreciation Week here. And, while trust continues to be a problem for me, I certainly have appreciation. This week, I choose to remember the positive and give thanks.
*Name has been changed to protect the privacy of the child.