The moment I knew I was pregnant, I knew I would love our child no matter what. I would do anything to protect her and I would help her anyway I could. When my perfect baby girl was finally born and I held her in my arms, I was relieved that her birth was without incident. At her first check-up, she was pronounced “perfectly healthy” and I finally let out the breath I didn’t realize I was holding. We knew how lucky we were then and we still know it. Now we face something I wasn’t prepared for, navigating my own feelings about mental health, sensory issues and having a child who may have “special needs.”
Growing up in the early eighties, special needs were not nearly as prevalent as they are now. I’ve recently learned that even that classification has been adjusted because really, don’t all kids have needs related to one developmental area or another? I get that. I really do.
Some kids need extra help in math or reading and there are tutors for that. Other kids need help processing their emotions or learning appropriate social responses to certain situations, so it would make sense that there would be help for that as well. I know some adults who definitely could use a primer in that, so I really do get it.
Unfortunately for me, I was born in the late 70’s and grew up in the 80’s. A time when special needs meant the short bus. Yep, I’ll say it. That’s what it meant and it wasn’t a good thing. It wasn’t nurturing or meant to be discussed openly. They were the kids who got stared at as they went by and probably got bullied at school. I went to private school, and it was rough enough to be one iota of different in that sea of green and white uniforms, so I have no idea what it was like for a public-school kid in the 80s. You have my sympathies, though, if any Jon Hughes’ films are to be believed, I can only imagine how hard that had to be.
So here I am, a mother, fully in love with her child and ready to help her gather all the tools she’ll need to fend for herself in the world, with that archaic stigma in my head. Fast forward to one of several conversations with teachers, parents and colleagues about Miss O and her behavior/reactions/responses and their appropriateness. At first, we knew she had some trouble with big feelings being overwhelming. The tantrums at two weren’t nearly as bad as they were at three and we chalked it up to having a threenager.
That’s around the time when Hubs and I were starting to have difficulty applying the many tools we had gathered from so many helpful resources like parenting books, conversations with friends, check ins with the pediatrician and, of course, the internet – eternal source of all things helpful and confusing. If you ever want to feel like a horrible parent, google something about parenting and trust me it’ll tell you you’re doing it wrong. If Google doesn’t crush your spirit, the comments on any parenting-related post will.
It wasn’t until we started noticing Miss O having trouble sleeping that we got really concerned. The Almighty Google offered us a weighted blanket and etsy made it so. That was a game changer. At least until we noticed that she was still constantly chewing on markers and her fingernails. Then the fear of being left alone became apparent.
Based on my experiences, I have pretty mixed feeling around therapy, but, again, I’m willing to try anything to help my baby, so when it was suggested that we see a behavioral therapist, I scheduled the first available appointment, which, incidentally was for three months later. That was my first inkling of how hard this was actually going to be.
After a few visits, the therapist pronounced Miss O “normal” and I left feeling more lost than I did before. We hadn’t learned anything and while Miss O really enjoyed playing with toys during those visits, I felt there was more we could have been doing. I let it sit and we continued working with the tools and strategies we already had to try and help our “normal” child manage the world around her. For what it’s worth, any time a therapist uses the term “normal,” I’m instantly suspicious. The human psyche is far too complex a construct to have anyone be called normal.
After the first few months of first grade, Miss O declared that school was boring. This raised a huge red flag with Hubs and me, mostly because we’ve both been called smart kids repeatedly when we were younger and we know that smart kids who are bored in class often misbehave. You might as well call us Exhibit A and Exhibit B. Suddenly some of the stories we’d been hearing about Miss O having a hard time with other kids or wanting to stick with one activity past the allotted time made a little more sense. After some very encouraging conversations with a colleague of mine with similar experience, we scheduled a meeting with her teacher and prepared to figure out how we could keep Miss O more engaged in class.
That meeting was incredibly eye-opening for me. Not only was Miss O doing very well in school, she had just been moved up a reading level and was now reading in one of the advanced first grade groups. Her behavior, however, was not the best, but not in the way I expected. Apparently, my little mini-me was one big walking bubble of emotion, ready to pop at any moment and usually erupted into tears…for everything.
We have long been aware of Miss O’s deep empathy, for her friends, us, and the world at large. Her emotions are big and, it seems that bigness is not limited to anger. She also suffers deeply for injustices, perceived and real, loss and disappointment. But, don’t we all, really?
We found a new behavioral therapist and after a few meetings, this time actually involving interaction directly with Miss O, she recommended an evaluation for occupational therapy.
And that’s when I lost myself completely.
I could not get past this awful image in my head of my perfect girl being taunted her whole life for being one of the “special” kids. I felt ashamed of myself for even thinking it. She’s not broken and there’s nothing wrong with her. I know these things to be true. She has plenty of friends with different needs in her class, her Daisy troop and her dance class. Between her cousin and me, we can only eat about four foods, for Pete’s sake, so we know all about accommodations. It’s 2019. I shouldn’t be feeling like this. It didn’t help though. It took me a while to recognize my struggle to come to terms with the stigma in my mind and what it meant for moving forward with Miss O.
Then I was saved by a small act of fate. A spot opened up in the school’s lunch bunch. It’s a group of elementary school kids hosted by the school social worker that meets once a week. They do some activities, play some games and learn how to express themselves and their feelings in healthy ways. They had an opening and because we had met with Miss O’s teacher, she thought of us and mentioned her to the social worker. One permission slip later and Miss O was in.
I wish there had been a lunch bunch in my elementary school. Hubs and I reflect on this a lot lately. How many of us in our age group could have benefitted from programs like this? So many of us were told to “toughen up” or “stop being so sensitive” without being shown how to actually achieve that. I learned that crying was for babies and that apparently, I let the world around me affect my mood in ways that are “dramatic,” (i.e. sometimes music, movies and even commercials make me cry and that’s not good).
Translation: You act weird and you need to stop.
I was a time bomb of raw emotion from age twelve until…well…it’s better now, but I had to figure it out on my own and I sure could’ve used the help. It’s with that lens that I now view the road we’re heading down.
Miss O can read on her own now and when she pulled the lunch bunch permission slip out of her folder she couldn’t help but read it aloud to us to tell us what it was about. I braced myself for the tears I thought would surely come from being singled out as being different or needing help.
She was ecstatic. Her only upset is that it didn’t start the next day. She didn’t even blink at the description of the group’s purpose. That’s when I realized how “normal” all of this has become and how grateful I am to be in the school district we’re in.
We’ve only just begun this process, which is already complex enough finding a provider let alone navigating the insurance maze. We haven’t even scheduled our first appointment yet and I’ve already had three calls with the insurance company and four with providers. Not to mention the mountain of paperwork being processed on all sides.
It’ll be worth it in the end. I do know that. My baby girl is still perfect and I love her no matter what.