Category Archives: Disability

Adaptations and Services I’ve Used to Overcome My Disabilities

Last year, I wrote a post describing my limitations in as much detail as I could then. I got the idea from a disability discussion E-mail list that I was a member of in like 2004. The next discussion topic on the list was to go into adaptations you’ve used to overcome your limitations. Today, I will share about these.

As a toddler, I seem to have gotten by mostly without adaptations. I did have low vision, motor ipairments and was socially a little immature, but nothing too dramatic. I did have many colds until my tonsils and adenoids were removed at age four. I also saw a lot of specialists. For example, when I was about four, I was seen by some kind of rehabilitation physician because I neeed a cast on my left foot. I got lots of physical therapy and other early intervention too. However, I attended a regular preschool and Kindergarten until I fell apart in the spring of my second year of Kindergarten. Kindergarten always takes two years here, but I didn’t finish my second year because of needing to go to a special school that didn’t have a Kindergarten. Instead, I started in first grade early.

At around this age, I mostly got adaptations for my fine and gross motor impairments. For example, I got adapted scissors to be able to cut shapes out without needing to exert too much strength. I also got a large tricycle funded through the local disability services when I was about eight. I’m confused as to where my parents got the necessary doctor’s signature to get this mobility equipment. I mean, I must’ve seen a rehabilitation physician to declare that I had a severe enough mobility impairment, but I wonder whether the ophthalmologist agreed I had enough vision to cycle safely.

Of course, I did have some adaptations for my vision at this point too. I started reading large print in first grade. In fact, I had taught myself to read at around age five with large rub-on letters my Mom would put into little books for me.

By the end of first grade, I had to learn Braille because my vision was deteriorating. I got long keys on my Braille typewriter so that again I didn’t need to exert as much strength. For reading, at first the teachers would provide my Brailled assignments with double line breaks, because I had a hard time with it otherwise. Eventually, I could read Braille just fine, but it didn’t become my preferred reading method until I got a computer.

I still did use the vision I still had. In fact, I stll do, even though I only have light perception and a little light projection left. At age ten or eleven, I got a handheld magnifier. I remember using it to see the large print atlas we had in fifth and sixth grade, even though I really couldn’t make out anything on it.

By the time we moved across the country when I was nine, my parents stopped taking me to medical specialists. There was nothing to be done about my eyesight getting worse and worse and I no longer needed specialist care for my other disabilities. That is, this is my parents’ version of the truth. I think they may be right but there are some things that just don’t add up. Like, from age twelve on, I was accused of deliberately having an odd posture. Guess what? At age fifteen, the school doctor discovoered I had scoliosis. I had to have physcal therapy again.

At age thirteen, I started regular secondary school. I was functionally blind by this time and did my schoolwork on a computer with Braille display. I also got tactile graphics for the STEM subjects and tactile maps for geography. I also got lots of other nifty math tools, most of which I could barely use. I couldn’t even use tactile graphics much at all.

Like I said, I was discharged from all medical specialists at around age nine. At nineteen, when I graduated secondary school, I went back into care at the rehabilitation center for the blind. Besides orientation and mobility, housekeeping and other blindness-related training, I had to get physical therapy again for my scoliosis.

In 2007, I was finally diagnosed with autism and landed in the psychiatric hospital (not at the same time, mind you). My current psychiatrist remarks that I got little in the way of treatment there and she’s right. At first, it was thought I just needed to be moved into a group home and all would be fine, then when I got my last psychologist, it was decided I just needed a good kick in the behind and to move into independent livng as soon as possible.

Now that I’m 31, I don’t really use many adaptive devices other than my Braille display and my white cane, the latter of which I use more for stability than for its intended purpose. My iPhone has a built-in screen reader and I guess it won’t be long until NVDA is almost as good as JAWS for a computer screen reader. NVDA is free and open source, whereas JAWS costs several hundreds of dollars (that thankfully currently health insurance pays for).

I said eye doctors goodbye for good (except when I need a note to say I’m blind) in 2013 when my last chance to get a little sight back failed. I still see a psychiatrist, though my medcation regimen hasn’t changed in years. I have a community psychiatric nurse, whom I see biweekly for dialectical behavior therapy. As for my mobility, I’m due to see my GP on Wednesday to ask about this and about any treatments or adaptations that could help me improve.

Naptime Natter

My Experience Being on Disability Benefits #Write31Days

Welcome to day 3 in the 31 Days of Autism. Today, I want to wrote about employment or the lack thereof.

I never worked. I didn’t even have a summer job as a teen. I even only babysat for the neighbors once when my sister was ill. When I had to write a resume in college, I put the few barely-active E-mail lists I owned on it, LOL.

When I was seventeen, my parents told me I hd to apply for disability income. I was told it was just to make up for the work non-disabled college students do besides studying. This may be one reason my sister is still a bit jealous, as she never worked and hence didn’t have an income in college (other than her student loan).

I never had any trouble going on disability. I didn’t even have to meet the social security agency’s doctor or employment specialist face-to-face. It was all handled by a simple phone conversation with me and my parents and a few bits of information from my family doctor.

Note that I hadn’t been dagnosed with autism when I was first approved for disability in 2004. Once diagnosed, my support worker wrote a letter to the social security agency informing them of several things: I had been diagnosed with Asperger’s Syndrome, had dropped out of college and had been admiitted to a psychiatric hospital. I probably would’ve had to notify the social security agency that I’m no longer in a hospital, but I don’t know how to go about this.

In 2010, the law on disablity income for people who were disabled from childhood on was revised. I don’t know what was changed, but I heard that at least there was talk of not giving people disability benefits from age 18, instead moving the age threshhold to 27. I wasn’t yet 27 by that time, but maybe those already on disability were exempt. Also, those in institutions were talked of being exempt from this rule, and I obviously was.

In 2015, the Participation Act went into effect. This means people won’t get disability payments if they can do a task that is part of a job (instead of being employable in an actual job), have basic employee skills, can work for at least an hour on end and can work for at least four hours a day. In any case, it’s extremely hard to go on disability now. I was still institutionalized when I received the letter at home saying I had no employment potential. My husband jokes that the letter was full of zeros.

Before I’d received the letter, I had worried incredibly. Now that I checked an explanation of the components of employment potential, I’m worried all over again. A Dutch law firm states: “If you wash the dishes at home, you may have employment potential.” This was nuanced a bit to say that, for example, if you volunteer in a sports club cafeteria doing the washing up, this counts as a task. Interestingly though, I don’t think effectiveness or speed are counted in, but they do play a role in the one-hour and four-hour rules.

Many people I know, even those requiring a lot of support, are not approved for disability income under the Participation Act. I am just so glad I am.

“Just Blind”: My Experience With Passing and the Resulting Burn-Out

Last May, I wrote my first post in the 30 Days of Autism Acceptance. I never followed through with the rest of the challenge, but today, I’m inspired to write on the day 2 topic, which is passing and autistic burn-out.

There is a lot of societal pressure to look and act as “normal” as possible. Passing is the situation where people who don’t belong to the “normal” majority appear as though they do. This may refer to disabled people appearing non-disabled, but it also refers to people of racial minorities being perceived as white or to queer people being perceived as straight.

I never fully passed for non-disabled, because I’m blind, but I did try to pass for a long time. People however often could tell that I had some kind of disability even if they couldn’t tell what it was. Interestingly, besides not passing for sighted, I don’t believe I could ever fully pass for neurotypical, except to those who believe an autistic appearance is normal for blind people.

In addition to appearing normal, disabled people are also pushed to achieve those things that are deemed “normal” in society. That is, except when you look so obviously disiabled that people judge you to be too “low-functioning” for that, in which case they usually greatly underestimate your abilities. I may write about that at some other point. There is a lot of pressure even from within the disabled community to perform as well as non-disabled people do. I see this particularly in the blind community, except, once again, when a person is seen as severely disabled enough not to need to achieve.

Until I was twenty, I was almost universally perceived as “just blind”. Oh and presumably extremely intelligent. As such, I had to perform according to my intelliigence, so I had to go to a mainstream, high-level secondary school. All my problems there were chalked up to either my blindness or my high intelligence.

At age twenty, I resided in an independent living training home for the disabled, which had originally been set up specifically for the blind, so most staff had some expertise on blindness. It was there that it first became apparent that I’m not “just blind”. I was referred for a diagnosis and diagnosed with an autism spectrum disorder in March of 2007. Eight months later, while living independently, I completely fell apart. I experienced autistic burn-out. Yet many people still see my diagnosis, my burn-out and my subsequent voluntary admission to a psychiatric hospital, as an elaborate way for me to manipulate people into giving me care.

I never fully recovered from my burn-out, in the sense that I went back to living a “normal” life for a person who is “just blind”. I was in college in 2007. Now, even though I’m out of the institution, I have no plans of going back to full-time education or finding a paid job. Though I may want to attend some part-time education or do volunteer work in the future, I’m now happy to be at a day center doing sensory activities. I am also glad that I was finally approved for home support yesterday.

In this sense, I did in fact recover from my burn-out. I mean, I did not return to the life that essentially caused me to burn out, but I do think my life is meaningful. In fact, I am happier now than I was when I still passed for “just blind”.

Ten Things You May Not Know About My Disability Experience #SEND30DayChallenge

Today I discovered the #SEND30DayChallenge, a 30-day special needs and disabilities blogging challenge. I have participated in way too many 30-day challenges and there’s not one I’ve finished. However, they’re usually just meant to inspire people to write about certain topics. Most people I know don’t follow these challenges over 30 consecutive days.

The first topic in the #SEND30DayChallenge is “the meaning beheind your blog name”. I have a pretty self-explanatory blog name, so I’m not writing about this. Instead, I’m going with the day 2 topic, which is “10 things you don’t know about ___”. Here are ten things you may not know about my disability expierence.

1. I am multiply-disabled. One common myth about multiple disabilities is that the term should refer only to those with an intellectual disability combined with a mobility impairment. I do have a slight mobility impairment, but I don’t have an intellectual disability. However, I am multiply-disabled nonetheless. I am, after all, blind and autistic and mentally ill and have some other difficulties.

2. I struggle with seemingly easy things while I find seemingly diffcult things easy. For example, I can work a computer but not put peeanut butter n a slice of bread. Similarly, due to the variability in my energy level, executive functioning and mental health, I can do some things one day but not the next.

3. You cannot always tell why I have a certain difficulty. Neither can I. This is hard, because people often want to categorize and label things that are out of the ordinary.

4. I have difficulty with communication sometimes. I don’t just mean non-verbal communication, which would seem logical because I’m blind. I mean speech too. I am usually verbal, but lose my ability to speak coherently (or sometimes at all) under stress.

5. I have serious sensory issues. For instance, I find certain sounds incredibly overwhelming. I also seem to have sensory discrimination issues, like with understanding speech in a crowded environment. The worst bit about my sensory issues is that I don’t always notice which is bothering me. For example, I may be hungry but not notice it because there’s a radio in the background that catches my attention.

6. I have slight motor skills deficits. Whether these are diagnosable as anything, I do not know. People on social media often urge me to seek a diagnosis, as my parents either weren’t given a diagnosis or don’t care. However, I find this incredibly stressful and difficult.

Just today, I considered buying myself a white walking stick. They’re sold at assistive equipment stores for the blind. I after all usually use my white cane more as a walking stick and the white walking stick would still signal people to my blindness. However, as much as I seem comfortable invading Internet spaces for mobility-impaired people, I don’t feel so comfortable getting assistive devices for this reason.

7. I am blind, but I still can see a tiny bit. I have light perception only according to eye tests. This’d ordinarily mean I’m functionally totally blind and I usualy say I am. However, I can see such things as where windows or open doors are located. This sometimes confuses people, but in reality, most people who say they’re blind have a tiny bit of vision.

8. I exhibit challenging behavior. This is not willful misbehavior. Rather, it is a response to overload or frustration. I am learning better coping skills.

9. I am more than my disabilities. I have summed up most of my recognized challenges in the above points, but like every human being, I have my strengths and weaknesses.

10. I don’t have special needs. I just have needs. I mean no offense to the special needs parenting community, as I know they don’t mean to offend me. My point however is that, if we see the needs of disabled people as somehow more “special” than those ordinary needs that non-disabled people have, we may forget that not all our needs are explainable by disabilities and we don’t need to have a recognized disablity to justify our needs. We’re all human, after all.

You Baby Me Mummy
Spectrum Sunday

Adaptations I’ve Used for My Disabilities

A few months ago, I wrote a post in which I described my limitations in as much detail as I could. I had just agreed to settle on a brain injury diagnosis rather than autism, so had to figure myself out all over again. Since then, that diagnosis was revised several more times and I finally decided to want a second opinion. I want answers to what’s going on with me.

The good point of that post I wrote, however, is that I felt free to describe my limitations in a non-judgmental way. As a follow-up, I am going to write a post today on the adaptations I’ve used throughout my life for dealing with these limitations.

The first adaptations I remember using, when I was about four, were not for what most people think of as my primary disability, ie. blindness. When I was four or five, I had to have my left foot in a cast to prevent my heel cord from becoming too short. This problem is common in children wth motor difficulties like cerebral palsy, though it occasionally happens to children with other neurological conditions too. I also had limited strength in my hands, so I got to use scissors which bounce back automatically. When I finally got to use a Braille typewriter, it had lengthened keys which were easier to press, too.

When I went to the school for the visually impaired at the end of Kindergarten, I was introduced to large print adn later Braille. I started learning Braille when I was seven-years-old. Because I was a print reader before I became a Braille reader, I had an advantage and a disadvantage. I could already read and knew my letters, but Braille wasn’t my first written language. I didn’t become truly proficient at Braille till I was around twelve and still can’t read it as fast as some blind people.

Apparently, around age seven, I had enough vision to ride a bike. I didn’t have the balance though. I still don’t know whether it was my parents being pushy or I truly had enough vision to safely ride a bike, but in any case I got a large trike paid for through the city department of disability services. My parents transported it to our new city when we moved when I was nine, even though this required approval from the authorities. I used the tricycle for about five years, until I became too blind to safely ride it even for purely leisurely purposes in my quiet neighborhood.

By the time I transferred to the school for the blind at age nine, I no longer needed most adaptations for my motor difficulties. I could use a regular Braille typewriter and in fourth grade, we weren’t crafting anymore anyway, so no scissors. I had also by this time become a full-time Braille user, though particularly in fifth and sixth grade I still peeked at the large print atlas every now and again. I got a handheld magnifier for my birthday or St. Nicholas around that time, because without it I couldn’t use the atlas. I had a large collection of tactile maps too, which I also loved.

When I was eleven, I got my first laptop with Braille display. I had occasionally used my parents’ computer before then, but had by this time long been too blind to even see very large letters on the screen. I tried for a bit to use a screen magnifier on the school computer, but I quickly learned to use Braille and syntehtic speech on my own computer.

I also had a white cane, of course. I started cane travel lessons when I was around seven, but rarely used my cane until I was fourteen. Then, when I had entered eighth grade in mainstream education, I had realized I was going to look blind compared to all fully sighted fellow students anyway so I’d better use a cane.

I went through school using mostly my computer for learning. We had a number of tactile educational materials, but I rarely used these. I hated tactile drawings, because I had an extremely hard time figuring them out.

In college and university, I used my computer with Braille display only. I also had gotten a scanner, so that I could scan books that weren’t available in accessible formats. A few years ago, I bought myself an OpticBook scanner that is especially good for scanning books. I rarely used it though, because eBooks became accessible to screen reader users in like 2013. I also rediscovered the library for the blind and last summer, like I’ve said, became Bookshare member.

I never used adaptations for cognitive impairments even after my autism diagnosis. I wanted to learn to use some and I still badly want to get a weighted blanket someday. I also am currently exploring adaptations for my fine motor issues. Because I felt more secure this way, I did for a while use a mobility cane. However, it was too long, then when someone had sawn off a piece it was too short. Also, it isn’t safe to use a mobility cane for me without also using my white cane and because of limited use of my left hand, I can’t use both. The adaptive equipment store does sell mobility canes with the white cane look, but these only have the advantage of making one recognizable as blind. They can’t be used for feeling around for obstacles. I could of course use a mobility cane with the white cane look in place of my white cane when walking sighted guide. However, I have learned to use my white cane for some support. The main reason I choose to use my white cane rather than a mobility cane with white cane look, however, is that I feel too self-conscious. I feel that I’m not mobility-impaired enough for this. I do wonder whether I’d feel more confident walking if I had a mobility cane, but I fear people will judge me for exaggerating my disability.

Describing My Limitations

Many years ago, an online friend of mine was part of a disabled people’s ministry that explored what it meant to be disabled. She wanted to get me involved too, but at that point, the ministry was closing down, so she started her own discussion group. The first question we got was to introduce ourselves without mentioning our disabilities. I don’t know whether I did this with my last post, but I don’t want to do things over again. The second question was to describe your limitations. We could mention diagnoses, but the focus was on how disability limited us. I am now trying to answer this question in this post.

My first disability is blindness from retinopathy of prematurity. My vision is measured as light perception only. Technically, this means i can see the eye doctor’s flashlight when it’s brought into my visual field but I cannot tell what direction it comes from. This commonly leads to the misconception that people whose vision is measured as light perception only, are essentially completely blind. In truth, I can orient to light – just not the eye doctor’s flashlight. I can visually locate windows and see whether a light is on or off. With that last one, I do often need to check twice to be sure and I often find it easier to memorize the position of the switch than to depend on my vision.

Then it gets hard. I used to have a diagnosis of autism, but since that was removed, I now have to describe my limitations without depending on a catch-all label. Let me try. I have sensory processing difficulties. I am oversensitive to sounds and textures. With regards to taste, I am a sensory seeker, in that I crave spicy food. I can also be a seeker in the vestibular sense. I used to love to swing and when the movement therapist at my old institution had a trampoline set up, I was over the moon.

I may also have auditory processing issues. I have trouble understanding speech sometimes, especially in a crowded place. I haven’t had a hearing test in forever, so can’t be sure that it’s processing and not my hearing itself. Sometimes though, I do hear something, ask the other person to repeat it and then before they repeat themselves, I process what was said.

I also have social difficulties. I can keep a reasonably normal-sounding conversation but it takes me a lot of energy. I have trouble with reciprocity, in that soetimes all I do is listen and sometimes all I do is talk. I can’t do group conversations, because I get overwhelmed.

I have mild communication issues too. Sometimes, when anxious or overwhelmed, I go mute or stutter or have trouble finding the right words. I remember going mute in high school too, but not sure whether I had these issues before that. It could be anxiety, since I also have that. My psychologist is considering diagnosing me with generalized anxiety disorder, which basically means you worry to an extreme degree about all sorts of things. There are also additional symptoms, like difficulty concentrating, physical tension, etc.

I have cognitive issues too. This may sound stupid, because I have a high IQ. Maybe executive dysfunction is a better word. I appear lazy sometimes, because I get easily overwhelmed by relatively complex tasks and then end up not doing them at all. I also feel anxiety when people ask me to do things, but when I take the initiative, I feel more confident. I wrote earlier that this could be pathological demand avoidance. However, when for instance my husband asks me to do something, i’m fine with it unless it’s a complex task.

Then I have emotion regulation difficulties. I used to have a diagnosis of borderline personalty disorder, but that can’t co-exist with the brain injury I suffered from a brain bleed and hydrocephalus. I don’t have the relational instability that many people with BPD have. Mostly, my emotions are extreme. In this sense, I relate more to the profile for multiple complex developmental disorder (McDD) than to that for BPD. I have never been psychotic, but I do have some delusion-like thoughts.

Lastly, I have motor difficulties. I saw a physiatrist till I was about eight, but was too young to remember the diagnosis. I have a much weaker left side than right, although I recently found out that my grip strength is equal in both hands. The fact that I use my left hand much less could indicate mild hemineglect (lessened attention to one side of the body, usually left). I also have and have always had a lot weaker muscles than most people. I have however learned to live with that. I mean, what do you need to reach your toes for when in sitting position? I do have significant balance and coordination issues. MY gait is very wobbly. I recently learned that healthy people can climb stairs without even holding onto the railing. In my home, where the staircase has only one railing, I need to hold onto the railing with both hands and wobble sideways.

These are the limitations I can think of now. I have some others, but this post has been long enough. When I feel like it, I will answer the next question I remember, which was about adaptations for coping with your limitations.

In Between: Walking the Disability Line

This week, the prompt from mumturnedmom is “in between”. I immediately thought of my life as a disabled person. For many years, I’ve thought of it metaphorically as me walking a line between being good enough to be included in the non-disabled world and bad enough to deserve care.

I am multiply-disabled. I reside in an institution with 24-hour care. I am not even in the lowest care category for institutionalized people now that we’ve faced massive budget cuts and the lower care categories got deinstitutionalized.

Yet I am intellectually capable. I am stable enough not to need to be on a locked unit, and in fact am going to leave the institution in a few months. I will then fall in a lower care category, be entitled to less care. Yet I will be able to live a more normal life with my husband.

People often automatically assume that, if you have certain abilities, you are automatically less disabled than if you don’t have these abilities. For instance, I am always seen as “high-functioning” autistic because of my IQ. This is despite the fact that I’m in a similar care category to someone with an intellectual disability who has fewer behavioral challenges, sensory issues, or is more capable in daily living tasks than me.

People also often automatically assume that deinstitutionalization is appropriate only for those with few care needs, those who are “high-functioning” if you will. People don’t take into account that institutional life requires consumers to live in a group setting, which may not be possible for some.

I struggle with this view of disability as a continuum at best and a dichotomy at worst. It makes me walk the line between “high-functioning” and “low-functioning”, when in truth, I’m neither and I’m both and I’m in between.

I am “high-functioning” because of my IQ and my language skills. I am “low-functioning” because of my poor daily living skills. In most ways, however, I’m neither and I’m both and I’m in between depending on circumstances both within myself and in the environment. Yet I’m forced to choose.

And I refuse to choose. I want to be accepted as a human being with her own set of capabilities and difficulties. I refuse to choose between being “high-functioning” and being “low-functioning”, between being dependent and independent. After all, I am interdependent, like veryone else.

mumturnedmom

Five Things People Usually Won’t Understand About Life with Multiple Disabilities

Julie of Counting My Spoons just posted a list of six things healthy people just won’t understand about life with chronic illness or pain. I didn’t know the first one – that migraine sufferers just can’t take their medication at the first hint of a migraine -, because I don’t have migraines, but I could relate to the others. I feel somewhat guilty about that, because I don’t have a diagnosed chronic illness, except for possible irritable bowel syndrome, which causes the least bothersome of my symptoms.

I do have multiple disabilities, and I thought I’d do a similar list of things people who don’t have these disabilities won’t understand. These all seem to boil down to “we are individuals”, but for some reason, this is extremely hard for the non-disabled to understand.

1. We can’t just choose one of our disabilities and get services for that and then be fine. Seriously, why do you think it’s called having multiple disabilities? My social worker once asked me which is my most significant disability, so that we would find a supported housing agency suited to that. I know, that’s how the system works, but quite frankly, it’s nonsensical.

2. We’re still multiply-dsabled even if we don’t have an intellectual disability. It’s a common idea that “multiply-disabled” means intellectually disabled plus something. In reality, those who are blind and autistic like myself, those who are deaf and wheelchair-using, etc., may still identify as multiply-disabled. I identify as multiply-disabled partly to dismantle the myth that only those with an intellectual disability struggle with “additional needs” as it’s politically correctly called.

3. You can’t just take apart our needs in terms of which needs are due to disability A, which are due to disability B, etc. and then have a complete picture of our needs. For one thing, some disabilities cause a variety of impairments in many different areas and cause different impairments for different people. For another, disabilities influence each other. For example, I am blind, so you’d think I could be using my hearing to compensate. In reality, because of my difficulty filtering out background noise, I can’t. This is somewhat understood by people working with the deafblind, but if you have other disabilities, not so. In general, however, not all our needs may be explainable by a disability we’ve been diagnosed with. I remember at one point when I was at the locked psychiatric ward a man was there who had a vision and hearing loss in addition to his psychiatric illness. A nurse told him that he had to clean up the table after eating, because “he’s doubly-disabled but not triply-disabled”. Now I’m not saying that multiply-disabled people should be exempt from doing chores. I’m just saying that his apparent unwillingness to do the task might as well be inability, regardless of whether this is thought to be “normal” for a person with his particular combination of disabilities. (FYI: I consider mental illness a disability, so in that respect the man was triply-disabled, but in the psychiatric nursing profession, it’s usually not seen this way.)

4. Mild, partial or invisible disabilities contribute to our constellation of needs too. This isn’t applicable to me, because I have a visible disability, but it was applicable to some extent to the man at the locked ward I menitoned abov. He was partially sighted and hard-of-hearing, so because of his remaining sight, he was expected to do tasks I was exempt from. As I said, disabilities influence each other, so it may’ve been that he was in some areas more impaired than I am, but because all of his disabilities were partial, he was often regarded as more or less non-disabled.

5. We have absolutely no obligation to have an explanation for our every experience that is out of the ordinary. You have strengths and weaknesses too, so do we. I’ve often felt like I needed to have a diagnosis to explain my every difference. In reality, I’m an individual with my own sense of self, my own interests, my own stronger and weaker sides. Like I said above, our disabilities influence each other, but so do our personality traits. I am not the sum of my disabilities. I am myself.

Benefits of Mutual Support Between Disabled Adults and Special Needs Parents

On the Preemie Babies 101 blog, Laura Maikata wrote an interesting post on surviving the post-NICU roller coaster for parents of preemies. Indeed, premature birth affects children long beyond the NICU, sometimes lifelong. Getting a new diagnosis, facing a new issue for your child is hard. So is the sometimes long time that passes between you as the parent noticing something and getting the answers to whether it’s an issue to be worried about and if so, what the diagnosis is.

It is important at all stages of life as a preemie parent to get support. When your baby is still in neonatal intensive care, this is seen as obvious, but there is little support out there for parents of older preemies. There is the PREEMIE-CHILD E-mail list and accompanying website, but that’s about it.

I wrote a comment on Laura’s post on the importance of support from people further along on their journey. This includes parents of older children with your child’s diagnosis or parents of older preemies, but I wanted to make clear it includes adults with special needs or former preemie adults too.>/P>

As a former preemie and adult with disabilities, I have found that I have been able to help some parents of special needs or preemie children along their joureny. I am not very knwoledgeable, but i can share my experiences and give parents an idea of what it’s like growing up as a former preemie. I can also share, if I know it, what helped me overcome certain struggles that parents are now facing with their children.

On the other hand, I too have been able to gain support from parents of special needs or preemie children. They have the benefit of their child’s doctors and specialists knowing the latest research on their conditions, and strategies that work for a child with my condition, may also work for me.

I remember in 2003 being part of a group for parents of blind children. The group also consisted of a few blind adults. I was the only blind teen on the list I believe. At the time, I was mostly on the receivign end of support, and the parents and blind adults at the time encouraged me to go to blindness rehab (though if they’d known how low the expectations of rehab were, they’d not have liked it). Now that I’m in my late twenties and have gained a fair amount of knowledge on my disabilities, I am not on that particular list anyore, but am on others. I have, for example, joined a group for parents of blind/autistic children, and though I was more capable growing up than many of these children are, I can still help in some ways.

There is often an attitude in the autism community that adults with autism cannot speak on behalf of children with autism. I understand, if for no other reason then because parents are the legal spokespeople for children autistic or not. But I don’t understand that autistic adults cannot provide any sort of perspective for parents of autistic kids. I think both parents and adults can learn from each other, and it isn’t that one group should speak for the other.

“All Kids Do That.”

Kiddo’s Mom over at Autism with a Side of Fries wrote an interesting post titled “All Kids Do That”. The comment that “all kids” do something, is meant to reassure parents of disabled children, or disabled children themselves, that they aren’t all that different. I remember when I was around eighteen, my parents told me that 99% of my schoolmates had the exact same problems I did. I wasn’t different, except for being above-average intelligent (which, given that I went to grammar school, 99% of my schoolmates were, too). And oh sure, I was blind. Maybe that, or my reaction to it, explained all my oddities. Or maybe not.

The thing is, it doesn’t help a parent to hear that they shouldn’t worry about something they know is not typical. It doesn’t help a disabled teen, either. Of course, everyone has some quirks, but most likely you do not know that the disabled child whom or whose parents you try to reassure has many more problems than the behavior you’re currently seeing.

Also, you do not realize how much effort it takes for a disabled child to appear more or less typical. As Kiddo’s Mom says, it took lots of therapy for her son to be able to eat properly, swim or sing. Hopefully, Kiddo’s Mom delights in these results, but it isn’t your job as a stranger to callously assume Kiddo isn’t “really” autistic (or not “that severely autistic”) because he acts so appropriately. Kiddo’s Mom likely doesn’t even realize how much effort Kiddo pours into it, as my parents or staff don’t realize this in my case. Certainly you, being the family friend or relative, or even a complete stranger, do not know.

It is easy to assume that a disabled person isn’t “really” disabled, or isn’t as disabled as they or their parents claim to be, by observing a single behavior. I’ve been told countless times that I should stop posting about my self-care difficulties and meltdowns because I’m not like the commenter’s child, simply because I can write. Sure, there are difficulties that aren’t due to my disabilities at all. My inability to come up with some words in English is more attributable to my being a non-native than to any of my disabilities, and even native speakers of English sometimes have trouble coming up with words.

A disabled person is a person, too. Like Kiddo’s Mom says, sometimes parents of typical kids are slightly shocked when she says Kiddo does something their kids do, too. The underlying assumption is tht a disabled child’s every behavior should be related to their disability. In reality, it isn’t. I am disabled, but I am more than my disabilities. Just because “all kids do that”, doesn’t make me non-disabled, and just because I do something your typical relative does too, doesn’t mean they’re acting like a disabled person.