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.
Sometimes you really can’t say enough. I can say that without your help it is very likely I wouldn’t have graduated high school with a regular diploma. I can say that you taught me to self advocate, how to work within the disabled student system without letting it steam roll me and get away with things it shouldn’t, well before I actually had to in college, that was invaluable. You taught me to weave and even fixed a loom so that it was “handicap accessible.” That loom saved my sanity when I was in the hospital for a month. You made time for me and took me out just because. You cooked for me. We ate a sackful of hamburgers and talked until 2 A.M. I can write all of this and more and still not begin to say what you meant to my life. When the screaming and crying stopped all I was left with was an awful headache, a suddenly empty stomach,and shock. Now that the shock is wearing thin., I am left with….space. A void. I’m not going to ask why you left now, you always did things on your own timetable and heck with what others expected. Some people say that when you die you get to see yourself from the view of the people whose lives you influenced whether it was positive or negative you feel the emotional impact. I hope so because you’ve done me at least a lifetime worth of good. By the way you don’t have to worry so much, I’m ok . I have a good man who doesn’t give a damn about my chair or anything else related to my disability The universe didn’t just break the mold when they made you Nathan, they used a different wheel. You are always loved.
In response to this blog post I decided to write this one. I don’t often get the time for uninterrupted writing hence the sometimes sporadic nature of my posting. On the relatively rare occasions I do get a significant amount of time to write I do have company, oftentimes in the form of my eight month old giant of a golden retriever Gideon but when he decides to take a break from being my muse to eat I have Wyatt the Wolf and Hadda the Hippo for company. Both are stuffed toys made by a company based out of Utah called Zoobie. I’m almost 27 and I still have stuff toys, so sue me if my inner child still get a say. These are stuffed toys with purpose. They are meant to be the perfect multifunctional travel companion for children. Yes, they are stuffed toys but, if you undo the Velcro tabs that hold their legs underneath them they flatten out to become the perfect travel size pillow. They even have a zipper compartment with a blanket inside which will cover a child, or a small adult in my case completely. The best car buddy ever in my opinion especially since the blanket stays attached it to the toy. I am a reasonably small person and because I don’t move around like an able-bodied person they really come in handy. If I had to recommend just one toy to get a child for Christmas these are it. They even have little small ones with teething rings for babies.
In March of this year the Americans With Disabilities Act underwent a rewrite, one that I personally feel to be wrong and unfair. The original wording of the definition of service animal said Amy animal trained to mitigate a person’s disability. The law now specifically states a dog, with limited provisions for miniature horses which can be trained to guide a blind person in a manner similar to a dog. There are quadriplegics who are severely impaired who use specially trained monkeys to assist them rather than dogs, what happens to those people? They depend on their monkeys just as much as those of us with service dogs rely on them. Sigh
For those who aren’t aware of my service dog blog may I present….Golddenway’s Gideon, 5 month old Golden Retriever, service dog prospect and all around super puppy.
Image by Jens Dahlin via Flickr
This was not the post I had intended on writing when I woke up this morning. The post I meant to write was for more cheerful and upbeat,I suppose you could compare this post to a ship in a bottle. Of course I don’t mean a literal ship in a bottle. The ship in my analogy is representative of a dream that short of a miracle I will probably never see fulfilled, the bottle is my disability, that which keeps me from reaching my dream. At first glance the ship in a bottle analogy may seem strange so let me tell a story which might put it in a different perspective. When my mother was 16 she got the opportunity to go on a church field trip. While on the trip she got to help sail an honest to goodness 19th century schooner ship,The Shenandoah. She was a historical replica of schooner ships in general, not of any specific sunken ship.A significant amount of time has passed since my mother was 16 but that weeklong trip around Martha’s Vineyard is still one of the top five things she has ever done in her life, needless to say I heard a lot about it growing up. I think I actually love that ship almost as much as my mother. There is one major rub to this story, over the years trips on the Shenandoah have become something of a family tradition, my mother’s younger brother went this summer after she did and his daughter went when she turned 17. My sister has not ever been on the Shenandoah but I have never really known if it was because she didn’t have any interest in going or whether Mom wouldn’t send her because she thought it would be unfair to me if my sister went when I couldn’t. The real bummer about 19th-century schooners is that they are not handicap accessible., and for the sake of historical accuracy cannot be made so. I suspect my earlier analogy makes sense now. Mom recently read a story about the relaunching of the Shenandoah after being in dry dock for repairs. I’m not quite certain who cried more, me or her. To Captain Morgan and his crew, I wish you fair winds and calm seas(but not too calm) I’m glad with all my heart that the beautiful lady sails on.To anybody else: if you’re ever close to Martha’s Vineyard lookup The Black Dog Tall Ships, I have it on good authority that you will never forget the experience.