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

Image result for child shadow

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.

 

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Day 318: In Which I Realize Just How Lucky I Am or The School That Harry Built

For all the problems with America I am lucky, I am lucky that I live in a country where community based services were there to help my parents when I was diagnosed with Cerebral Palsy at 1 year old.  Children and young people with disabilities  in less developed countries aren’t so lucky. Today I learned a disturbing statistic 80%  of children in orphanages aren’t orphans. They are there because their parents or family feel ill equipped to take care of them. Not surprisingly alot of those children are disabled.

What did J.K Rowling do after creating Harry Potter and his Wizarding World and putting her name into the world’s pop culture history? She created a non profit Lumos a organization committed to finding solutions to the problems children and famlies face. Solutions that don’t involve orphanages. From the Lumos website

Across the globe 8 million children are living in institutions that deny them individual love and care. More than 80% are not orphans. They are separated from their families because they are poor, disabled or from an ethnic minority. As a result, many suffer lifelong physical and emotional harm.

Last year Lumos built the building that will house a school for disabled childrebn Maldova.. This year they are raising money for special desks, eating utensils, walkers, wheelchairs, handrails in the bathroom even a hydrotherapy pool.So if you know me, for my Christmas gift help the school that Harry and the Weasleys and the  entire  Wizarding World built because education and family are the real magic and every child deserves  to have both. Below is a link to the indiegogo campaighn where you can donate. They have met their goal but trust me that stuff isn’t cheap amd they will use every bit of overflow.

https://www.indiegogo.com/projects/j-k-rowling-s-lumos-help-kids-with-disabilities#/

 

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Day 289: A Belated Father’s Day Post

Daddy

A few years ago my mom found the card they attach to the end of a baby’s crib in the the NICU. My dad had apparently saved in a small yellow softcover baby book with a stork on the front. I learned a few things  when I saw that card. One: It is  one thing for your parents to tell you that the preemie baby that grew up to be you was tiny, it’s another to see 17 inches in a stranger’s handwriting and realize that you really were smaller than  most of the dolls you collect. Two:  I didn’t realize that after delivery the cards on the cribs are given the mother’s last name by default, which may or may not be the same as the father’s  Suffice to say the the name on the card  wasn’t either of the ones I’d expected so it through me for a loop until mom explained.There is nothing like learning a previously unknown detail of your birth story! I also learned that my dad wasn’t present at my birth, I don’t hold it against him, I WAS early after all and he was out of state apartment hunting for the soon – to -be three of us. I’m sure that had I arrived on time he would have been there.The relationship between us hasn’t always been easy. I think he relates more comfortably with my younger sister which may have something to with the fact that she is able and I’m not or nothing at all. I do know a few things though. When mom found the baby book with the crib card she said, “Here, there’s something in there your dad saved from the day you were born.”  When I got my hand cycle ( think of a Big Wheel you power with your arms instead of your legs) he sat in the driveway and put it together  for me the same as I  watched him do with my sister’s bikes over the years.When I rode it the first time he cheered just as much ( if not more ) as if I were six with my first big kid bike and no training wheels even though I was closer to twenty six.

     Dad works grocery. he has seen countless people, mostly women bring their toy sized  dogs into the store with them. Every time he sees this he asks them if the animal is a service and waits for a no or the blank stare that means they have no clue what service dog is before politely asking them to leave.I’m pretty sure that before I became obsessed with idea of getting one at the age of thirteen he didn’t know that much about them .
     We may not always communicate as clearly with each other as we’d like to, but I’ve seen the things you do Daddy, I love you too.
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Day 267: in Defense Of Cool Parents

English: Proud parents Family of swans on The ...
English: Proud parents Family of swans on The Fleet. (Photo credit: Wikipedia)

Growing up most of the kids in our neighborhood thought of my parents as the “cool parents”. Not because there weren’t any rules, believe me when both of your parents have served in the military there are rules. They were, and still are, considered cool because they would listen to both my sister and I and any of our friends who came to them with problems. Most of my friends have less than stellar home lives in high school and so my parents and by extension a lot of the rest of my family became anchor points for kids looking for something stable. As it turns out, I know several people who have active drug abuse issues going on through high school. I did not realize this for several years because my friends had enough respect for my parents and their home not to bring those substances around. I know for a fact that for some of my friends my parents acted more like parents to them than their biological mom or dad ever has. This post was inspired because I read a post here that said ” When a teenager says to someonem “your parents are so cool,” it really means, “I don’t realize this now, but later in my adult life, I will look back and judge your cool parents for being so stupidly insecure and permissive.”

I am not saying that some parents that teenagers think are cool aren’t permissive and insecure in their role as parents. I am merely saying that from my experience being known as the “cool parents” doesn’t automatically make you permissive or insecure. Growing up my sister and I were expected to maintain at least a B average in school. We were not punished for getting a C in the subject so long as we had put our best effort forward. Math beyond about seventh grade level in them always has been the bane of my existence no matter what I do therefore a C was acceptable when it happened because they knew I had put every effort into getting the best grades possible. By contrast if I had gotten the same grade in English or History, both subjects which come much easier to me you can bet I heard about it for quite a while. In case my parents do read this and they might because my blog posts are linked to my Facebook, it’s 28 years later, I still think you are the cool parents and I wouldn’t change a thing.

 

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Day 252: Since When is a Child’s Murder Understandable?

Autism spectrum
Autism spectrum (Photo credit: Wikipedia)

I am a disabled woman who kids kids eventually. Even though my disability isn’t caused but a birth or genetic defect but rather by a simple case of bad timing (I was two months and ten days early) and a lack of oxygen to the brain the fact that I am disables makes any pregnancy of mine high risk which in turn increases the chance that my child(ren) could have a disability. This scares me a lot. To be honest the idea of a physical disability doesn’t scare me half as much as the thought of raising a Downs Syndrome or Autistic Spectrum child does If however the universe decides to send me such a child I will love him her or them just as much as an able bodied or neurotypical child. The fact that there are some parents who feel overwhelmed by their chuld’s disability that they would murder that child is sad but can not and should not be seen as justification for doing so

Yes parenting a special needs child is different and in lots of ways more difficult than parenting a typical able bodied child but I believe that when you make the decision to become a parent you accept the possibility that things might not go exactly as you hoped. Murder is never the answer and being born with a disability isn’t a crime If you’re feeling overwhelmed talk to somebody call CPS anything is better than harming a child or adult who had no control over the fact they were born disabled.

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Day 242: Love, its Meaning and a Little Family History

Eileen and DaleThat is a picture of my paternal grandparents headstone, I never got to meet either one of them. My dad is the youngest of three boys (I believe there had been a baby girl before my oldest uncle but she was stillborn). I suppose you could say that my father was an ‘oops’. My grandmother Eileen was diabetic and after her second boy, my uncle David, was born she was strongly advised against getting pregnant again due to the impact it could have on her health. I’ve heard rumors that what led to my father’s inception was a birthday present of sorts to my grandfather. When she turned up pregnant again my grandmother’s response was to walk up to my grandfather call him a bastard and slap him across the face so I’m not sure how true the birthday present rumor is. On a side note my grandmother’s reaction has become something of a tradition at least for my folks, I know for sure that was how mom told that she was pregnant with me and I think that maybe how he found out about my younger sisters impending entrance to this world as well.

The doctors were right, the last pregnancy did not do her health any favors, she died with my dad was 10 years old. I am sorry that my sister and I and my cousin never got to know her but at the same time if she had followed medical advice neither me or my sister would be here. From her life I have learned that love is sacrifice and that sacrifice isn’t always bad.

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Day 221: Christmas Cards Again

English: Christmas post card Česky: Pohlednice...
English: Christmas post card Česky: Pohlednice “Kladenský Betlém” (Photo credit: Wikipedia) Not the actual card.

I got my first Christmas card yesterday. I rarely get snail mail and when it isn’t related to my disability it is usually from one of a list of people I can count on one hand. It was from Oz (the only person in my family who calls him John is my grandma which I find mildly confusing because both my Uncle and Great Uncle, her oldest son and her brother are John also,) and it is beautiful. It is now taped on my wall above my computer.

Inside the card was a photo of his three year son, the kind that you put in a nice frame and sit on your desk. I don’t have a frame to fit it yet but you can bet I’ll get one, because I wouldn’t dream of doing anything else. I have referred to my myself as a step parent or step mom before but this somehow makes it even more Blood or not I love our boy dearly and that is all that matters.