I’m pretty sure that any parent raising a child with a disability has grieved for the able bodied child that might have been. It’s only.natural, nobody wants to think that their child will have to live a life labeled “different, other*. What folks might not realize is that disabled people grieve for themselves. When I was a little girl I wanted to be a soldier, a doctor and a firefighter by turns.
I’ve always been disabled and even as a child I never thought even for a second that I would wake up and be able to walk. I believed that I would some how be able to do those things in spite of the fact that I can’t walk much less run a six minute mile and the lack of dexterity in my hands meant that even if I made it through med school I would never made it through being an intern.
So yes I know I’m lucky. Yes it could be worse. Lots of people I know have it worse than me. That being said the only people who might get away with telling me I should be grateful for what I can do are my parents and my boyfriend and girlfriend and even they are likely to get snarled at some days.If you see me on a rough day know that I will be okay and if it looks like I need help,offer it ,but the only time the word lucky should be mentioned is if we’re talking about the lottery.
ramen drawer (Photo credit: pinprick)
I have a love hate relationship with ramen noodles. On the one hand I love noodles and pasta of all kinds. Let me tell you something in case you’ve experienced it, ramen is a staple food for those who demographics label the working poor. My parents have been part of that particular demographic section most of my life I have learned to survive on alternating meals of ramen, mac and cheesee or buttered and salted white rice. I had the poor college kid thing down long before I ever went to college.
The issue I have with ramen is that as a food it’s not very disability friendly. Seriously all three of my “step children” ( my boyfriend’s son , andmy girlfriend’s two girls, who are all under the age of six) have better fork skills than I do at this point. It really is sad In order to eat ramen more or less independently the package of noodles has to be thoroughly broken apart before being cooked in as little water as possible. I usually ovoid the just microwave lunch in a cup option because the longer noodles and significant amount of broth is enough to make me cringe even before I make the mess I know is coming. Today however I triumphed and manged to eat a cup without dropping half the contents on the table or my shirt. It’s a good day.
Speaking of the working poor I personally that anybody who wants to run for President should have to work a minimum wage job and live in a one bedroom house or apartment with only basic amenities (for my purposes basic includes tv and internet but no dishwasher and no washer/dryer hook ups so they would have to budget for money and time spent in a laundromat) let someone who aspires to the biggest responsibility live like that for three months and I might believe they have half a clue of how to help the country as a whole.
This post has been brought to by the Zero to Hero: 30 Days to a Better Blog Challenge at Wordprss.com
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.
I think that most parents of children and adults with disabilities have gone through a grieving cycle at least once sometime after the definitive answer that their child will never be seen by the world as “normal.” I know my mom has and she tells me all the time that she asked for a child who would need extra help in some way. I don’t think my father has ever really stopped grieving and even though that makes our relationship difficult at times I know that he doesn’t love me any less,he just wishes life were easier for me.
I do not take offense at my parents’ grief and I will never think less of someone for mourning the loss of the more typical child they expected. When a family expects a baby they tend not to dwell on the idea that their kid might never learn to speak, feed themselves or walk. Even if there are genetic issues within the family that might come up, there is always the hope at least for a while that the child will not be touched by it..
When the expectation of a typical child goes away everything changes, Instead of where will they go to college? Its will they be able to keep up with kids their same age at all? The list goes on even to things as basic as will my child recognize me as Mom/Dad?
My folks and I got lucky. I can’t walk but I can talk I graduated high school with a 3.0 GPA and went to college. I now live in a different state from them.
- I told you that to tell you this: even though I accept my disability as part of me there are still things I grieve over I will probably never be able to cook alone so having a meal waiting when everyone comes back from work, school, errands,, etc. probably isn’t going to happen unless its take out.
- I will never be able to teach a cartwheel. (Having to tell a child who thinks you hung the moon and stars that you can’t show them how to do one really sucks(
- I can’t open soda bottles or cans. (Seriously? I’m almost thirty and they are not pickle jars)
- Someone else till cuts up my food when needed because I can’t use a knife and fork together. (Again, I’m how old and can’t do this?)
- I can’t go to the restroom without help. (Enough said)
Thea things(and a whole lot more I didn’t list( frustrate, irritate or just plain piss me off. Do not put me on a pedestal for just living life. Hopefully if I inspire you it’s is because of an accomplishment that doesn’t fall under the heading of day to day living
Pollyanna (1960 film) (Photo credit: Wikipedia)
I can be a very cynical person. A certain percentage of able-bodied people expect those with disabilities to have a Pollyanna attitude all the time. Pollyanna has not lived in my house on a regular basis since about the fifth grade ask my mother if you don’t believe me. Where the able-bodied community got the idea that we are perfect angels all the time I have no clue. Personally I have been known to swear and drink alcohol on occasion. Yes I am perfectly capable of sex you can ask either one of the two people standing behind me. Yes I realize that there is both a man and woman standing behind me and I’m so glad you’re smart enough to know the difference between the two. Not all disabled people choose to date others with disabilities even though you obviously think we should. Do you also think interracial marriages should still be illegal?
Why do you think it necessary to speak extra slowly to me? I promise you there is nothing wrong with my hearing or comprehension though I am beginning to wonder about yours. Please do not hurry your children away from me when they have a question. I am not a leper and treating me as such it is very hurtful. I have no intention of harming your child and they cannot catch my disorder I promise. The only thing that will result from there talking to me is a smile, an age-appropriate answer to the question, and permission to pet my Golden Retriever sidekick if they wish, nothing more.
If you see me in a store, restaurant etc. I would appreciate it if you would not address questions about me to whoever happens to be with me. Rest assured I am perfectly capable of understanding English. I am also perfectly capable of answering for myself. I realize that some people in wheelchairs often cannot do one or the other but it is impolite and presumptuous to assume. Please be advised that such an assumption is likely to elicit a smart ass, sarcastic, and/ or just plain rude response from me.
To parents shopping with children: I realize my service dog has more charm than should be legal. I also realized that he and children attract each other like magnets. Most of the time I do not mind stopping and chatting with you and your kids about him, it really does brighten my day. I do however request that you not let your children touch him without asking my permission first. He doesn’t bite and children on his favorite things in the world but I view the area that he occupies beside me as an extension of my personal space bubble and would greatly appreciate you and your children asking permission before entering it. I thank you for your consideration and politeness and taking the time to read this.
Photograph of Helen Keller at age 8 with her tutor Anne Sullivan on vacation in Brewster, Cape Cod, Massachusetts (Photo credit: Wikipedia)
When I was still in grade school I saw a movie that would forever impact the way I dealt with my disability. After seeing The Miracle Worker I read everything I could find about her. Here was a disabled woman and her family who instead of listening to what modern convention of the time said they should do with her (leave her in an institution and wash their hands of her) they saw to it that she was taught to communicate. If her family was more than a bit skeptical that it could be done I’ll forgive them because at least they were willing to try.
She became the first deaf blind person to graduate with a Bachelor of Arts and eventually became a lecturer on many subjects, including socialism.
Helen Keller was my first disabled role model. She showed me that a disabled person could make their own life in spite the slings and arrows that circumstance and society put in the way and for that I will always be grateful.
Cello (Photo credit: kruemi)
I read a blog post recently that struck a little closer to home than usual. It was written by the parent of a special needs child, the post was about coming to terms with the child that is as opposed to the child that might have been. What some folks don’t realize is that disabled people go through something similar, we have to come to terms with the fact that our disabilities sometimes mean that certain aspirations are just plain out of reach.
I love piano and cello music even though I will never play either instrument. I have seen both the piano and cello I will never have. I have looked in the mirror and seen myself in Army dress greens with jump wings I earned. The image eventually fades and I’m left with just me.
So what to do about it? I have tried burying it, there isn’t a hole deep enough. So I listen to cello and piano pieces on good days(days when I am mostly at peace with myself and my body mechanics) and smile and am thankful that someone has the dexterity that I will never have and with it the ability to usher beautiful music into the world. Days when the green eyed monster bites deep have been known to find me in angry tears over the same music. When the internal maelstrom dies down though I remind myself that even though I lack the means to reproduce it I have two ears that work exceptionally well with which to listen to the music, which is more than some have.
Coming to terms with inability to serve in the military is probably one of the hardest things I’ve done in my life, it is ongoing process which will most likely only end because I die and not because I have completely made peace with it.
For people in non military families that may seem strange but someone from one or both sides of my family has served in every major conflict America has involved itself in, with the possible exception of the current situation and even that I’m not sure of because I’m not in regular contact with some of my far flung cousins. So since I am unable to serve I do the best I can at home. I am far from politically minded but I have always made it clear that I support the troops of all branches no matter which set of views the current administration agrees with.
Some days are better than others but in each day there is the opportunity to make it better than the one before and that’s the most important thing of all.
This is daredevil Evel Knievel photographed in front of his house in Ft. Lauderdale, Florida, circa 197?, by Bill Wolf. He lived across the street from Lani Wolf, my oldest friend (our parents were friends and we “met” as infants). Now Lani lives in Oakland. She came across this while moving and sent it to me this week. (Photo credit: Wikipedia)
I realized something recently,, if you counted each individual stitch from every surgery I have had in my life as a separate score I would probably have somewhere over 300. That is not counting the small incidentals cars that you get from just being a kid. I used to hate my scar. I would wear long pants in the middle of August just so that the scars on my knees weren’t visible no matter what the temperature was outside. I think my mom became convinced I was a closet masochist. As I got older I conceded to high temperatures when necessary but still despised my scars. It wasn’t until college when a friend saw |the scar that follows most of my spine and reacted with “how did you get that bad ass scar and how do I get one” that my opinion of them really changed. I nearly fell off the counter I had been sat on in shock! I don’t deliberately go looking for situations that I might get scars from but ever since then my attitude towards the ones I currently have and any I might eventually get has change drastically, they have become something of a point of pride rather than shame. I no longer (for the most part) see myself as disfigured because of them. I can look at them and know that I have survived things that many people a lot older than me can’t fathom dealing with. Indeed, what doesn’t kill you makes you stronger. Do not mistake me, I am not trying to become Evil Knievel even though at times I have made that joke. Some of my “adventures” I have only managed to escape without a broken neck by sheer luck and there is not a day that passes in which I do not think the universe that I made it through relatively unscathed. I will not shrink from life no matter how rough and tumble it may become.