Raising a Child With Special Needs

As a single mom raising a high-needs child with several diagnoses, I was always under the gun for childcare. My son's behavior issues, which went undiagnosed by his school for close to two years, limited our childcare options. Numerous parents, teachers and peers commonly knew my son as That Kid, through the various schools that shuffled us through their doors. I had a hard time with this for years, but I have finally embraced our starring role as the infamous single mother/son duo in "A Day in the Life of That Kid.”

Single motherhood limited my finances. I couldn't afford a nanny. Therefore, my son attended in-home daycare centers or preschools. When he started elementary school, he needed one on one care after school, but the on-campus after-school program was all I could afford.  It was a good program. The teachers cared, but weren't qualified to provide proper support to kids like mine. 

For example, one day my son had a heated debate when he was told to “get his reading muscles out.” Like others on the autism spectrum, my son often thinks in black and white. Therefore, this was a silly request; everyone knows muscles are found on your arms and legs. There is no such thing as reading muscles. He had no problem voicing his opinion (rather loudly) that the teacher was a liar.  Unfortunately, the teacher did not validate my son's observation (It's true, we do not technically have reading muscles) or remind him about social skills, such as the need to keep some thoughts to himself. 

The only take-away for my son, and others like him, is that their way of thinking is wrong.  

Occurrences like this happened daily and made their way through the grapevine, which only reinforced the idea that the child or student is wrong, disrespectful or ill-mannered.

There were a couple of parents who wanted us gone. At another program, a woman even campaigned to make this happen. Sadly, that's common for That Kid. People can't see past what stands out the most: the bad behavior. They can't see that behind the dysfunctional actions there is a scared, struggling 5-year-old who needs help handling his emotions because his brain is wired differently. I've observed that unless a child's disability is physically noticeable, there isn't a lot of compassion from the general public for That Kid or for their parents. Therefore, it’s not uncommon for families like mine to change schools numerous times.  

Our school district ultimately placed my son into a private school that did not focus solely on academic scores, but also on the importance of student social and emotional growth. The school has been a life-changer for us! I'm glad we landed where we now are. I found my people!  

For instance, one fall evening at Parents' Night at my son's new school, I was chatting with other parents about past times of frantic school calls, unbelievable meltdowns, pieces of expensive equipment that had been broken and the various types and sizes of screens their children had smashed. We discussed the diagnoses we shared knowledge of, the medications we have tried and at what point we decided to try medication. (Contrary to popular belief, this is usually an agonizing decision.) 

I felt like I was part of a secret club. There was a strong sense of camaraderie, as if we had been to war together. We found no judgment here, just sympathetic nods of understanding and looks of sympathy.  When one of our children shares a story of another child who may have done something inappropriate, we say, "Oh, that's too bad. It sounds like they were having a bad day.” There’s no pointing fingers because we get it!  

We don’t call or message another parent to offer unsolicited advice, such as “Your son should learn to use his words.” (if I had a dollar for every time that happened, I could have afforded a nanny). During this Back to School Night conversation, I felt brave enough to blurt out, “If anything, I'm happy it wasn't my kid doing the damage that day!" For a minute, I wondered if I had said the wrong thing, but then slowly, I saw many smiles creep across parent faces. Tears crept into the corners of my eyes with the feeling of acceptance. Finally!  

It was then that I embraced this remarkable life. For the first time, I had something in common with some of the wealthiest families of Silicon Valley. Behavior disorders, mental health issues, ADHD, HF ASD, ODD, SPD and every other acronym that represents That Kid do not discriminate. Having money will certainly help you pay for services and help, but money will not save you. Your professional status will not spare you and neither will the size of your home, the type of car you drive, your marital status or your level of education. 

Our bumper stickers don't tout slogans for Perfect Attendance, Honor Roll or Marching Band. If we wanted to have bumper stickers, ours would say, "Honk if Your Child Hasn’t Hit You Yet Today" or "We Brake for Sensory Breaks" or better yet, "Proud Imperfect Parent of an Imperfect Student.”

I am that proud imperfect parent. I'm far from perfect; I am a two-antidepressant and one-anxiety medication type of imperfect parent. I have shouted at my son way too many times. Some mornings, I would be stressed about getting to work on time or couldn't find my keys and then he would have a fit because his socks felt weird. More than I like to remember, I lost my temper with him before I understood what was going on in his world. A little seam in a sock felt like a rock to him and actually hurt. I still beat myself up when I recall mornings like that, mornings I can’t redo with compassion and patience. I don't know that I will ever forgive myself. 

The frequency of occurrences like this happened more and more. I was depressed and struggling, but it wasn’t until I got past the stigma of depression and anti-depressant medications that I took time to consider all the stress and lack of sleep my life required. Only then did I get myself on medication. Had I known the difference it would have made in my ability to handle my life's circumstances, I would have done it years prior. I regret that, too. 

As parents, we also deserve a little more compassion from others and ourselves. We shoulder a lot. We are guilt-ridden. We feel shame. We dread having to leave work at the last minute to pick up our child from school. We worry about how long we will have a job. I remember one teacher told me, "You’ve got to try not to show him you're stressed." Thanks. I thought. It's not so easy when you always give me a rundown of every little thing that he's done that doesn't fit in your box of "good student.” 

I am now at a point in the trenches where I am proud to say where my son goes to school because he's with other students like him, surrounded by others also having a challenging time controlling their emotions and frustrations.  They get upset because they are perfectionists and can't stand it when their letter m doesn't look just so. They get upset when they have acted out. They are embarrassed by their outbursts, but often, embarrassment looks like more anger to an outsider. 

At the school my son now attends, he doesn't feel like he is out of place. It's a school where it’s normal for all kids to have problems and know everyone is working on them. The school is sending the message It's okay not to be perfect. It's okay to have strong feelings. We are here to help you with those

More importantly, I have witnessed children at this school developing more compassion for their peers than I have seen many adults who encounter a child having a meltdown.  

I wish more schools were working to determine what the reasons are behind children's behaviors and acting out, not solely focusing on the result of the behavior, consequently making them a classroom or school spectacle. Due to the pandemic, parents and children need proper support more than ever right now, but especially the parents and children of high-needs families. We may not ask for help, but we need both help and compassion.

Kendra Demler resides with her son in Silicon Valley. She is passionate about providing a voice for families and children with learning differences and also volunteers with her community’s adult literacy program. She enjoys running and exploring the Bay’s trails and beaches with her son.