Like most children I suppose, Ranee is like a puzzle. There are so many components to her, many issues that we are working on sorting out. Long before Ranee’s mental health issues began, we started exploring her learning capabilities. It has been a very long difficult process trying to get clear answers. It seems like there’s really no clear direction when it comes to getting help for a child with “issues”. You have to really stay on top of the professionals and push for testing, then push for recommendations. Maybe that’s not the case everywhere but that sure has been our experience. Nothing has been clear-cut and easy, maybe because the issues aren’t clear-cut. But for concerned parents it can be mentally exhausting. I find myself exhausted of the process a lot, but I know relaxing isn’t a choice. I can see how a child could get lost in the system if they don’t have someone to advocate for them, or the resources time or energy to stay on top of the professionals. Quite honestly a lot of the professionals that we’ve gone to for help seem to be brilliant people, but there’s a lot of disorganization.
More than once we’ve shown up for an appointment only to have the professional not show up, phone calls not returned, referrals to other offices that aren’t followed through. I asked one of Ranee’s therapists about this, she knew exactly what I was talking about. She said it’s an overworked system, there are so many children that need special services that the offices get overwhelmed a lot of services are state funded and are losing funding to have all the help they need. It is imperative to keep calling, keep asking. This is your child’s well-being it is not the priority of the professionals but it is your child, your priority.
With the school age years, came new difficulties. She had done two years of preschool and they encouraged us to send her to school. Because of where her birthday lies we had the choice to start her early or hold her back a year. The teachers at preschool said she was bored, she was ready. And honestly I didn’t mind giving up the expense of preschool. We thought she would hit the floor running, but from the beginning there where issues. She enjoyed school well but she couldn’t keep up, she was always short of the expectations, she could never reach the benchmarks. I remember those teacher conferences being so frustrating. I know my child is smart and bright, but why aren’t the tests reflecting that, why can’t they see it? The teachers said she would catch up, something would just click.
We did extra schooling in the summer, to prevent summer slide and hope that she would catch up. Except she never did. It became evident that something was wrong, she couldn’t retain the information, as quickly as she learned it she would forget. We’d spend the week practicing her list of sight words then go off to school prepared for the weekly sight word test and come home with a failed test. She flipped her letters p and q b and d numbers like 5 and 2, 6 and 9. When she read she had difficulty keeping her place, she would skip lines. Her writing illegible, spacing non-existent. The school provided a remedial first grade where they focused on the major learning components, reading writing basic math. If second grade benchmarks were met by year-end she could move on to second grade. Otherwise she would repeat first grade. She didn’t meet the benchmarks. That’s when I started pushing for testing.
The school agreed to test for learning disabilities and the process began. But again it was a slow process it took half of the school year for the testing to be finished. At that point I was putting my full faith in the professionals, only to find out that the testing wasn’t being done time was passing and we weren’t any closer to the why she was struggling. Now I can be a pretty passive person but when it comes to my children that’s when warrior mama comes out. I try to be understanding, I am kind, and respectful. I am not ignorant to the fact that my child is not the only child that needs to be serviced. But I have no problem making a nuisance of myself to get answers, light a fire under these people. If eyes roll when they see me coming that’s okay, that means you know me and why I’m here. You need to know I’m fighting for my daughter.
At this point we had started noticing other issues. Aversions to certain materials of her clothing. All the beautiful clothes I had bought sat folded and untouched in her drawers. I couldn’t understand why she didn’t want to wear the beautiful lace tops and super cute jeans with the emblems on the pockets. she insisted on only wearing fleece sweatpants. Everything had to have the tags cut out. Sneakers had to fit just right if the tongue didn’t lay just right she’d have to take them off and start again. And then their where the socks. Call me crazy but I have this thing about socks. You have to wear socks with sneakers or the sneakers smell. Socks and sneakers just go together, it was an ongoing battle the sock issue, they didn’t feel right, she didn’t like them. We would compromise and she could wear them inside out. I would wrangle them on her feet and she would submit. I thought I had won that battle until one day I was cleaning out her book bag and found a whole pocket full of socks. She would appease me and then take them off at school and hide them away in her book bag. I don’t know why I didn’t think anything of it. After a particular rough morning of compromising to get her dressed, I called up my friend to ask her if she had the same difficulties with dressing her child. She assured me that all kids have their quirks you have to pick your battles. So I layed off the sock issue, bought tagless shirts and resigned myself that my daughter just liked a sporty style over a lacy one. I knew nothing about sensory.
The day I finally realized it was more than just preferences we where sitting in our religious services. I had my Bible on my lap, she had her little pocket-sized Bible we had gotten special for her and I tried to help her look up the scriptures. As I tried to point her finger to the found scripture her finger recoiled. “No mommy I don’t like the way it feels she whispered, the way what feels I whispered back, the paper and the sound.” What sound I thought, paper does have a rustling sound I suppose but I never actually paid attention to it.
When we got home I asked Ranee explain to tell about the paper
“Oh I don’t touch-paper she said as if it was a well-known fact. I don’t like the way it feels and sounds”
I ran my hand over the paper to hear it and she cringed. Most of us would never notice that paper makes a sound I’m not taking about the rustling it makes when you flip pages in a book, paper has a sound when your skin rubs against it when you put your wrist down position your hand and write. The paper has a sound.
My heart broke, my child, my spunky vibrant child, was trying to navigate the world in her little body against obstacles we couldn’t see. She wasn’t being stubborn or picky. I missed it, I wasn’t aware, I didn’t ask her the right questions and I made her wear socks. I needed to educate myself.