Day 337: To All the Parents of Special Needs Children Who are Mourning a Child Who Isn’t Gone, It’s Ok

My name is Rachel. I don’t often put my real name in blog posts but these particular words deserve more weight than that of the blogging pseudonym  I fashioned for myself, they deserve the  name my parents gave me, because even though  I often write in other names, even answer to names  so far removed from the name they gave me that a stranger wouldn’t recognize both of them as belonging to the same woman,  I love my name and my family. My name is Rachel, I’m 31 years old and I have spent every single day of those 31 years with Spastic Quadriplegic Cerebral Palsy.

I’ll tell you a secret, this isn’t the life I would have chosen for myself. If I had been given a choice I would walk, skip, jump, just like everyone else. I would have marched to cadence like my mother before me. I  would’ve gone  to swing dance events with my  younger sister and with our partners we’d turn heads even when we didn’t win.

I would’ve eaten, slept, and breathed, fencing.  I would’ve climbed trees and learned to play the cello. There has not been a day since I was four years old that I haven’t mourned the loss,  or rather the futility of, these dreams. That girl named Rachel never lived but I see her ghost in the oddest places. Every time my sister got stranded or needed a ride she got into a car I still don’t have to pick her up. She got a job at sixteen , the real me, the living me , hasn’t had taxable income from a job in my whole life.

My point in telling you all this is not to whine about how terrible my is life is, it’s not terrible. My family loves and supports and encourages me to be as independent as possible. They encourage me even when it scares them. I wouldn;t have chosen this life but in living this unchosen life I believe I have impacted people’s lives in ways I might not have had the opportunity to if I were able-bodied.

I tell you this so you know its ok to be sad. You’ve spent months picturing this child’s life in your head, by the time they are born you’ve sent them into adulthood at least a dozen times. Then something changes and that perfect picture you built of your child’s life seems littered with roadblocks and pitfalls that weren’t there before. How will others ever see your child for the wonderful, beautiful spirit they are if they have to look past all the things that make them different first?

They are out there. Finding them may feel a little like panning  for gold but don’t give up. Take advantage of your nearest Early  Intervention program. That is still the first thing out of my mom’s mouth when talking to parents of special needs kids five years old or younger., they can teach you and your child healthy and safe ways to deal with tantrums among other things. Just because toddlers can’t quite grasp why they are different from their friends or sibling doesn’t mean they don’t know that they are and that can be very upsetting.

My final piece of advice, don’t be ashamed to say this is hard. As the parent of a special needs child,you will be that child’s primary voice for at eighteen years or longer, that isn’t anybody’s idea of a cake walk. If you find yourself overwhelmed by this task please seek a support group or a therapist, to effectively help your child you may need to help  yourself first and anybody who belittles you for showing human fragility probably couldn’t stand a day  in your shoes anyway.

 

Day 336:Thank you, Mrs. Alsup

When I started school in Tennessee after moving from North Carolina I was miserable. I had just lost all the friends I had worked hard to make in North Carolina , and I instinctively   worried that the civilian school culture would be far less accepting of me than the base school.  In later years I would find just how accurate that fear turned out to be  but the fourth grade was wonderful. Mrs. Alsup was and still is my favorite teacher from elementary school.She  and Mrs. Ryan , my in school aid,did everything they could to help me succeed.  When Mrs. Alsup had the  idea to pair some of my rowdier classmates with  me in a  peer helping system in class, she asked my parents but she also asked me how I felt about it and made it clear if I said no the whole  project was scrapped. I said yes and it turned into one of the most fun and enlightening things I have ever done. I  think she was one of the first adults to give me full veto power over an idea and mean it. This means a lot because I’m 31 now and still not granted that basic level of autonomy  by some people. I told you all this small stuff to get to the big thing, the thing she probably doesn’t even realize she did, Mrs. Alsup saved my life.

Fast forward to the fifth grade  As wonderful as the fourth grade was that’s how awful the fifth  grade turned to be. The teacher was great, my aide that was evil. Mrs. Ryan had decided to go to school to be a teacher and so I was paired with a new aid entering my fifth-grade year. This woman was verbally and/or  emotionally abusive every single day . She teased me and called me names because  I needed LOTS  of repetition to grasp math concepts. She yelled at me and made  me cry because bladder spasms I couldn’t control  made me have accidents at least once a week, which of course, she had to clean up. She chastised me about my weight, even though I was only eleven and had only just started to come close to weighing the same as other kids my  age. For a while, I wasn’t allowed to play on the playground because she didn’t want to push my chair through shavings. I was permitted to read outside during recess but I think  the other kids thought I was in trouble because I  was sitting with teachers and didn’t talk to me , meaning the baby friendships I had started the previous year fell apart fast.

Why didn’t I tell my teacher? She and my aid were friends outside of  school and I didn’t think she’d believe me. I know that I should have told her anyway. I could’ve gone to Mrs. Alsup, she would have listened  if my new teacher wouldn’t . At  some point that year I seriously considered suicide. The reason I didn’t try apart from worrying about my parents and sister, was the  love and time Mrs. Alsup put into me .

Day 335: Windows 10, Suffragette and Mary Poppins, or How Glynis Johns Introduced Me To Femenism

Earlier this week a power surge during a rainstorm killed the power supply for my desktop computer. The original  plan was to replace the power supply  now and get a new laptop around November/December. Dad came home with the power supply and a new gamer’s laptop .Uncle Paul is going to fix and then inherit my desktop because his laptop has seen better days. If anyone reading this is thinking of upgrading to or starting with Windows X it bears little resemblance to the previous incarnations of the Windows operating system, For instance, it works best with touch screen capable computers, which I didn’t realize I had until Oz, my boyfriend, tapped the screen to take a picture while helping me set it up. Color me floored.  My parents have always been fairly tech savvy, I remember hanging around the net on a  dial up connection via Prodigy when I was eight but touch screen computers and tablets  were things I never thought  I would see.I still need to transfer my speech recognition software to this computer but that’s a fairly simple thing.

I got my first DVD from Netflix this week. Suffragette.  I knew the suffragette movement in Britain had been more militant than its U.S. . I knew vaguely of hunger strikes, women jailed, broken shop windows and small bombs in letter  boxes on street corners. I knew of these things first from the unlikely medium of a Disney film. Remember Mrs. Banks from Mary Poppins? She  was part of the British women’s movement and a lot of her dialogue makes references to it. I found out recently that, when she approached for the part, Glynis Johns almost insisted on her own song in the movie, and that’s how  “Sister Suffragette,”was born. It was because of that song that I first asked my mother what a suffragette was, (I think I was six) and from there I learned about Elizabeth Cady Stanton and Susan B. Anthony and the notable women from the American movement.

It was some years later, middle school at least, before I realized that the dramatic extreme things Mrs. Banks had said  were also real. Real things that had happened to real women. Watching Suffragette I saw it and was horrified and humbled all at once. Shocked and stricken at the lengths these women went to reach a goal my generation  and many before me take for granted.

This  coming  Presidential  election has caused me a great deal of sadness and truthfully I had almost decided not to vote this year.  Seeing that movie reminded me that my place in the electorate was bought with a blood price and I will not scorn such a precious gift , no matter how undeserving the candidates.