Tired of being special needs

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I have moderate functioning autism and a motor skills problem called dyspraxia. I need to be cared for like a little kid in different ways. Stuff I have trouble managing myself. It's embarrassing to talk about. I need help with taking my shower. My dad needs to adjust the knobs for me and also help me dry my back off. I need help getting dressed in the morning. And this one is really hard to say, sometimes I need help with wiping myself after a bowel movement....sorry hope that's not too gross and TMI. I just feel like such an invalid sometimes. This might as well be a video of my dad having to dress me in the morning to get the job done quickly Click for video

Anyone else have to go through this kinda stuff?

I have never gone through this stuff before but it sounds absolutely horrible. If it makes you feel any better though, sooner or later almost everyone of us who lives to old age has to deal with this. What you are describing is what people in retirement homes go through every day, often in even more extreme ways. I won't say: "it get's better", because I know nothing of dyspraxia and had to look it up. But maybe you will come to a point where you are more comfortable with it.

I hope you can stay strong and not feel any less for it, because there's absolutely nothing your mind can do when your body refuses to obey it. Much strength and good wishes to you.

If there are ways in which you could gain more control over your bodily movements, the feeling you feel when you need this help could be a motivation to pursue them, but I'm not sure if it works that way? From what I gather it's like being spastic a bit, or your body just doesn't work sometimes?

PS: I looked it up and apparently some celebrities have this too! Even Daniel Radcliffe, who plays Harry Potter: https://en.wikipedia.org/wiki/Developme ... able_cases

That's pretty neat isn't it? He may only have a very mild form but obviously he's been treated for it in some ways. Maybe the mild forms are just like clumsiness and the heavier ones are more like cerebral palsy. Again, not much of an expert here tho I am very clumsy.

I've grown out of needing that much help, but I was in your shoes about into my teen years and am only semi-independent today. It's difficult when people do things for you, because they start to think that you aren't fully adult (or, I suppose, in my case much younger than I actually was--treating me like a five-year-old when I was ten). They think that doing things for you gives them power over you. For me it was made worse by the fact that my mom didn't acknowledge I had a disability at all and decided to shame me for not being able to do things for myself.

But it shouldn't be that way. When we hire someone to change the oil in the car, or clean the house, or drive a taxi for us to ride in, that job doesn't give the person doing it the kind of power that a caretaker has--even though the principle is the same. Why is a maid cleaning a house different from a personal care attendant cleaning a house? They shouldn't be different.

Independence isn't about doing things for yourself nearly as much as it is about making the decisions about what gets done and who does it. When you need help with something, and other people use that to make you feel dependent, helpless, like a baby, then they're taking away from you your right to determine what your life will be like. And the really aggravating part of it is, most people don't even have a clue that this is what they're doing. They think they've got every right to run your life for you just because you're disabled. It's especially bad with parents because they still think of you as a little baby even when you're grown up, and it's so tempting for them to think of you as a baby or a little child just because you need help with things that a child would usually need help with. Parents mean well (usually) and caretakers are (usually) just following the general culture of the caretaker being dominant over the patient... but that doesn't mean that's the way it ought to be.

Unless I miss my guess, it's this kind of thing that's wearing on you--you're tired of being "special needs" because of all the things special needs means in our society. It wears on me, too. I live in fear of losing my ability to live on my own--not because it would mean people would have to do things for me, but because I know they would use it as an excuse to take my right to self-determination.

I have Dyspraxia too, so I think I know how you feel. D: I don't have the exact same problems you do, but it is hard for me to cook or clean though. I also can't drive either. I used to have a hard time with the knobs too when we lived in Maine at the time. We had an old house that had hot and cold knobs. My parents had to adjust them for me because I couldn't figure them out. When we moved to Arizona, I was happy to have just the one knob that goes from hot to cold. After that, I could adjust my own showers and stuff.

I do have to sit down when I shower because of my poor coordination with my feet. I have one of those hose shower heads to shower with, which really helps a lot. However, is there anything you can do without any help though? I mean, if there is... at least you have those things you can be proud of for doing yourself, right?

They only assist me as needed. Like when I make it clear I need help. I'm always given the option of doing it myself. I'm lucky because my dad really likes me a lot and we always work as a team.

Ezra, You don't ever have to feel embarrassed about that sort of thing here. We love you and support you no matter what you need help with. Your dad sounds really great. And no matter how much help you might need, it does take anything away from how wonderful and special you are.

Last edited by skibum on 18 Sep 2014, 3:01 am, edited 1 time in total.

I'm sick of it as well. This probably won't help you, but I feel way less "special" when people don't know about my label.

I know as a kid I needed some help dressing my self and washing my hair due to under developed motor skills. I couldn't tie my shoes until middle school which was awkward for me being 12-13 year old asking his teacher to tie his shoes, Tho thankfully for me at least I was able to fully dress my self around 11 and able to shower around 10ish and was able finally tie my shoes around 13.

Ezra, I feel for ya and everybody else whom is on this g0ddamned spectrum this one I wouldn't wish on anybody! All I can say is try to live to the best of your abilities I too am tired of being labeled "special" I'm tired of having to do remedial work to prove my self because state agencies only see the disability and not what I am really worth and the teachers in school only saw the negative rather then the strengths that I have.

Anyways, Hang in there kid!

I can somewhat relate to your situation, but I do not have dyspraxia, Up to high school, my mother would lay out the clothes for me to wear (for school and other functions) as I found it too challenging to pick out my outfits. And into my college years, she washed my hair in the sink after I showered as I found it too awkward to wash it under the shower nozzle. For me the clothing issue wasn't about needing help getting dressed, but in deciding what clothing to select (for school and when I was dating). But the washing of hair could be perceived as a motor issue, but it is not today.

I believe that with time, you will be able to dress yourself without difficulty. The important thing (IMO) is that you realize the issue and want to be less dependent. Try not to become frustrated. I believe that if you set your mind to something, you can accomplish it.

The thing about teamwork is that it goes both ways. He assists you as needed but you may already be assisting him and not even realizing it. I adjust the water temperature in the shower for my daughter as your dad does for you. And she reminds me of peoples' last names when I forget because she has a better memory for such facts than I do.

You may already be assisting your dad without realizing it. If you aren't already, you will be in the future. You may have motor problems from dyspraxia but you also have young muscles. The time will come when your dad's muscles weaken with age and he needs your help to lift or push something heavy. Sometimes you will be the helper and not just the one being helped.

I have dyspraxia as well, so I know how you feel. To this day I'm still terrible at tying shoe laces etc

Unfortunately, my mother decided that because I was dyspraxic that I was a total invalid, so I my dyspraxia got worse cos I wasn't allowed to do things for myself like ride bikes, use a kettle, etc. my mother was even surprised that I could use the swings in the park :p Sometimes people labels can be blown out of proportion and can hinder rather than help your condition. I hated doing P.E at school because I knew I wasn't as physically able as the other kids. I also found it hard to dress myself, and always forgot to brush/comb my hair. Seems AS and Dyspraxia are very much linked?

I have found that my Dyspraxia has lessened over the years, or that I'm able to cope with it better. Doing martial arts has really helped in that respect, with my coordination and balance. I'll never be able to do backflips or anything like that, but unless I actually told someone I'm dyspraxic they wouldn't be able to tell there was anything wrong with me.

Basically, don't fret too much over it dude, it'll get better with time, as your body develops and you teach it certain muscle memories for different tasks.

When I was a teenager I did get a lot of help with certain things such as getting washed, dressed and choosing clothes.

The thing is, I didn't really think too much about it at the time, I thought it was "normal".

It was only when I became properly independent later on that I realised it wasn't typical for a teenager to be treated that way.

Part of the reason for this was down to the fact that I had been neglected and the other part was probably down to me being very young for my age.

When I was in my twenties the memory of it all gave me severe anxiety and I felt very ashamed.

I'm over it now.

I wish you well Ezra, as always.

Why the hell didn't your parents or guardians get you Velcro then? Would have made life a whole lot easier for you. It's all about being innovative. Evidence: my own lousy motor skills.

I've always tucked my laces inside my shoes.

No ones any the wiser.

My son is about your age and still needs help with many things. He only recently learned to tie his shoes and he still looks really awkward when he does it. He can't wear pants with fasteners. He can't ride a bike. He looks really awkward when attempting to do anything sports-related. He breaks things. You know the drill.

I don't really know what to say or do to help either of you feel less embarrassed. If I am honest, if I were in your shoes, I'd probably be embarrassed, too. But the truth is, neither of you can help it. It's not like you don't try or you don't care. I always feel like my son tries way harder than everyone else for less results. That isn't something he should feel embarrassed about. It's something I feel very proud about. He persists, even though it is hard, and even though I think many NT kids wouldn't last a day in his shoes. I bet many NT kids wouldn't last a day in your shoes, either. That is something you can feel proud about...how far you have come. How many things you have overcome. It shows true strength of character, something that many people who have it "easy" will never have.