The other day, my youngest brought me a picture frame. It is a very small frame, maybe two inches by two inches. Looking back at me was a girl named Barbara and a sophomore or junior image of myself. Memories of smells, touches, frustrations, scary moments, and pure joy flashed before my eyes. I was a peer tutor in high school. It was a ninety-minute period of the school day in which I had the privilege and opportunity to tutor one-on-one with the special needs students of my school.
When we think special needs now, we think all sorts of things. In the classroom I helped in, though, it was severe needs. The needs weren’t hidden, should I say? By looking at the student, you knew the child was different. I loved every single bit of it. In fact, I loved it so much I wanted to become a special needs teacher. That is, until I realized the time needed to do my job the way I’d want to as a special needs teacher, would require more of my time outside the classroom. Which meant I’d not be a great mother or a great wife. I guess something in me wanted to be a mother, though I didn’t realize it at the time.
The picture Del found didn’t left my mind because I realized something: I’ve always been one to jump in and help those less fortunate, no questions asked. I want to educate and provide services to those in need, especially the education aspect. Teaching brings me such joy.
It brought me joy as an elementary student, too. Many of those same students in the special needs class when I was in high school, were there in my elementary school, too. I remember asking my classroom teachers if I could skip a recess and go into the handicapped room, as we called it then, to help out. I sacrificed age-appropriate fun and freedom, so I could provide a smile to a student in need. I marveled at these students. I couldn’t get enough of them. It was a satisfactory feeling of joy seeing them smile or achieve a task I took for granted. Those two classrooms, too, were a place of inclusion before the word inclusion became an education buzz word. In those classrooms, I was the one different than them. I stood out as different, yet they accepted me as I was when I walked in.
Fast-forward a few years, or decades actually, and I find myself reminiscing those times because I find myself in a similar situation, yet I’m in a different role. You see, the gal I was referring to, Barbara, she was born a normal girl. Everything about her was functioning as normal until one day she was kicked in the head by a horse. She had lost a lot of function of her left side of her brain. Going from normal to not being able to talk fully, let alone walk normal again or even function as before, had to be so hard to face every singe morning. I saw her frustration. I saw her get upset at times. Even though she struggled, she pushed through it and tried her best, teenage hormones and all. Her father even invited my family and I (and other volunteers and teachers) to his house for a cookout as an act of appreciation for our love of Barbara.
I don’t think having Barbara on my mind is a coincidence. I’d been toying with writing a post about something personal and not sure if it was honoring. But I get to be a part of the special needs community, again, decades later. This time I am the mother of a special needs child.
My daughter’s special needs aren’t visible, well mostly. Most of them are internal. If I didn’t tell you and you spent a few hours with her, you’d likely never know or think she was just acting goofy. Outside she behaves and acts mostly like a normal five-year-old girl.
Inside there are some quirks we’ll call them and some birth irregularities that cause her to not do everything as a child her age should. We are still figuring out a large portion of her diagnoses, but we are in physical and occupational therapy for two hours a week and have since stopped psych for now.
For a while I was scared of the waiting room life. What was it going to do to me? To my boys? God gently reminded me, this is their story too. This is the story they get to learn and use in their lives in the future. Maybe they won’t be scared to get help when they need it. Maybe they won’t be scared to jump in and help when someone is in need. Maybe my boys will be very sensitive to the needs of their wives and children.
The waiting room life caused me to step out of my comfort zone. It has taken me to a place where I’m being educated in a new realm. I worried Del would never have a nap in the afternoon. If you don’t know why his sleep is so important, read this post here. I worried I’d never get a workout in on those days. (Because of that lack of sleep I get a little witchy without a workout.) I worried Daylan would feel different because she goes to therapies every week and that isn’t what a normal child does. I worried she’d have a complex because she’s in a doctor’s office more times a month than normal children.
Then again, that’s her story. Her story of how she gets to be an overcomer, she can seek help without fear of a stigma. She can know her mama is always by her side even in the tough times. For example, last month she had an MRI done. Pediatric MRIs usually require the child to be put under anesthesia. Daylan asked if I could go back with her. The anesthesiologist was great and let me stay with her while she went to sleep. He told me, “Mom, tell her you love her and give her a kiss. You will be the last voice she hears and the last touch she feels before she is out.” Whoa. He understood her. Me. Us. He let my kiss be the last thing she felt and the last voice she heard before falling asleep. The best part? I got to be there with her.
This is my story. Our story. I get to teach still, just in different capacities. I am learning to mostly be a student. What we know as normal isn’t always the reality before us. The more we know about our reality, the more of a life changer we can be. The time in the waiting room has shown me what I really want to be when I grow up– a life changer.
I am so grateful to the teachers who allowed me to be included with those students so many years ago. I’m grateful for the reminder of how I got to be included with the special needs class. Without knowing, those people in my life at that time, prepared me to be where I am today.
I’m so grateful I get to be the one doing this life alongside my daughter. Special needs is exhausting, don’t get me wrong. Her needs are always in the back of my mind. The appointments, juggling doctors, therapists, insurance, medicines, and our other children are difficult. While we don’t have it as difficult as other families, invisible special needs are draining, too.