On Special Needs, Accessibility, and Advocacy
Helen Rose
December 16, 2018

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When you hear “disability” or “special needs” what comes to mind? Wheelchairs? Nursing care? Feeding tubes? Hearing aids?

These are all correct and perfectly acceptable answers, as are these:

Developmental therapy, feeding therapy, speech therapy, ADHD, occupational therapy, weighted vests, sensory chews, heavy work, early intervention, autism, joint compressions, first/then, picture schedules, temper tantrums, sensory integration disorder, and avoiding public because some days you just can’t handle answering for yourself and your child over and over and over again.

My son has special needs that aren’t always clearly visible. He does not use a wheelchair, he uses a weighted vest and sensory chew necklaces. He has some sort of therapy four times a week and we just had another evaluation to add a fifth. He has a case coordinator through our state’s early intervention program. He has an IEP evaluation with the school system coming up because they will be taking over managing his services when he ages out of early intervention at age three.

I have been navigating this experience since he was two months old.

We’ve seen more specialists than I can recall. There have been neurologists, allergists, psychologists, occupational therapists, speech-language pathologists, early intervention therapists, and pediatricians, among others. He had an MRI at less than one year old and a comprehensive psychological evaluation at two.

The biggest indicator of Henry’s differences is his behavior. Taking him to get a haircut is traumatic for everyone involved. He lays down in parking lots, grocery stores, and restrooms to have meltdowns frequently. We’ve been asked to leave one daycare and unceremoniously dropped from a second. We’re on our third daycare this year and they have been very accommodating, even when he bites eight friends in one day. Well-trained and educated people who work in childcare tend to understand that kids who act out aren’t giving them a hard time, they are having a hard time.

The general public is much less understanding. The “why can’t you control your child?” looks and comments are irritating. The “Is he ok?” comments are marginally better, because they’re at least disguised as concern. The ones that really get to me are the “can’t you just…” or “he needs a spanking” or the looks that say “he’s far too old to be acting like that” or “what kind of parent lets their child act like that?”

“Can’t you just…” just what? I’ve tried everything. Every technique, every reward, every consequence. Nothing has worked yet, and at some point, we really just need milk and diapers and I can’t avoid taking him to the store any longer, so I brace myself for the temper tantrum and the laying on the floor that will definitely happen.

“He needs a spanking” kills me for so many reasons. Would you spank a diabetic child for being disoriented when their blood sugar is off kilter? Would you spank a deaf child for not hearing you? Spanking is ineffective and potentially damaging in neurotypical children – why would anyone even think about spanking a child with extra needs?

Away from public, he does ok. His baseline is bouncing off the walls and refusing to eat, and we work with it. He is a chaotic force of nature, seemingly determined to cause destruction of himself and everything he comes in contact with. He cannot be left unsupervised for a second, and that is not an exaggeration. I never sleep fully. I take him to the bathroom with me. I keep him within arm’s reach almost all the time.

It’s extra hard when he’s sick, which is often, because giving him medicine includes me swaddling him like a baby, sitting on top of him, and forcing him to swallow it one drop at a time. Getting him to bed takes about two hours these days and getting him to do any sort of non-preferred activity basically takes an act of God.

These extra needs and challenges present their own unique rewards, like the psychologist saying he’s incredibly intelligent and compassionate, or his early intervention therapist writing, “spontaneously hugged a sad friend” on his progress note.

Ultimately, I know he will be ok. I still worry about him because I’m his mother and that’s my job, but I know he will be ok. I worry more about the kids with much less privilege than him who face similar issues.

I briefly worked as a milieu counselor for a residential treatment facility for children with neurodevelopmental disorders earlier this year. The interesting thing about the population of residents I worked with was that most them were in the foster care system. These residents had case managers who would come visit once a month and no one else to advocate for them. They had cognitive behavioral therapy once or twice a week and sometimes received services such as OT or speech. The rest of the time, they were being managed by generally compassionate, though overworked, underpaid, and undertrained milieu counselors. The facility was hardly therapeutic and notorious for having a high turnover of staff.

I lost any hope for that job when I realized that many of the higher-functioning residents would likely be discharged and left largely to their own devices upon aging out of the foster care system. They had minimal preparation for the world and that, paired with the unresolved trauma that most of them carried, would likely lead them down a dismal path, especially once they found out that drugs and alcohol could temporarily alleviate their emotional pain.

As a society, we are absolutely failing these kids. The company that ran the facility is failing them. The administrators are failing them. The foster care system is failing them. Often, their families have already failed them, and all of this comes together to perpetuate cycles of poverty, substance abuse, and incarceration.

There is only one difference between my son and the children I worked with: my son was born into a situation where there were resources available to help him reach his full potential.

While in theory, these resources are available to all children, the fact is that they are not accessible to everyone. Not every family can take their child for well-baby checkups, where Henry’s developmental issues were first recognized. Not every family can take time off work for the copious amounts of evaluations and appointments it takes to get services. Not every family had a background in behavioral health and understands that developmental issues can be worked with and need not be stigmatized.

Not every child has someone who can advocate for them. Social services systems are overburdened and underfunded. I don’t believe for a second that the case workers I met at my former job didn’t want to spend hours advocating for their clients – I know that they literally couldn’t because they had dozens of other kids on their caseload who needed them just as much.

The cultural attitude of prioritizing profit over people is not sustainable. Cycles of poverty, substance abuse, and incarceration all feed into one another and they are all fueled by the attitude that money is more important than humanity.

We can invest in shiny new facilities to contain the young victims of these cycles, we can invest in medications to keep them compliant and we can invest in prisons to contain them when they age out – or we can invest in those people in the first place.

We can invest in education. We can invest in healthcare and early intervention and supports that give people a leg up out of poverty and level the playing field.

So many social institutions are centered around addressing the byproducts of the much bigger problems of inequity and poverty. What if instead, we looked to the root of those problems? I firmly believe that while this would take a significant investment of time, money, and determination on the front end, the results could be profound.

I hope it goes without saying that I absolutely adore my son and I’m glad to have the privilege of helping him learn to navigate this world. Some days are challenging, but every single one of them is worth it.

Spring 2019 – Edited to add: Henry’s behavior has improved miraculously over the last several months, due largely to a positive shift in our living situation and continued therapies. I am incredibly proud of him and profoundly thankful for all of the professional and personal support that helped get him to where he is today.