Day Activities: Why Do I Seem to Have High Support Needs?

Yesterday, I had a meeting with my day activities and home support staff, my comunity psychiatric nurse (CPN) and the social consultant (local authority person who decides on care funding) in charge of my case. My mother-in-law also attended. The reason for the meeting was my trouble functioning at day activities.

I go to a day center for people with intellectual disabilities and attend a group within the center for people with severe intellectual and multiple disabilities. I don’t have an intellectual disability, but did seem to do best at this sensory-based group up until recently. Then, three new service users joined us, leading to increasing stimulation, stress and staff workloads. I was increasingly overloaded and irritable, which led to the staff cutting my hours because they couldn’t deal with me on top of the other high-support service users for a full day.

The problem is there’s no clear-cut diagnosis to back up why I function best at a low-stress, sensory-based, high-support group. I mean, yeah, I’m blind, but most people who are blind can work regular jobs. Yeah, I’m autistic, but only diagnosed with autism spectrum disorder level 1 (ie. “high-functioning” autism or Asperger’s Syndrome). Yeah, I have mild motor impairments, but my doctor doesn’t know or can’t tell me to what extent they’re diagnosable (as mild cerebral palsy or something else). Yeah, I have mental health issues, but no-one has a clue to what extent these affect me and what they’re even diagnosable as.

As a result, some professionals and non-professionals choose to deny I have high support needs and tell me it’s all dependence, manipulation or attention-seeking. I was lucky that, with one of these professionals being my former psychologist who got me in touch with my current day center, the day center staff and management were up until recently more than willing to accomodate me. For instance, I started day activities at the industrial group at this center, but was soon moved to the sensory group despite, like I said, not even having an intellectual disability, let alone a severe one.

Now that I’m even falling apart at this group, I hear different opinions on where to go from here. At one point, my home support coordinator said maybe the gap between myself and the other service users at the sensory group is too wide, so we need to look at a different kind of place, like a sheltered art shop. I disagreed and not just because my art-making skills are mediocre at best. At more “job-like” day activities places like this, there’s usually more pressure and less support. My day activities staff agreed, adding that I’d tried the industrial group already.

My CPN’s coworker suggested a care farm. As much as I love animals, I know I won’t even be able to navigate a farm without a sighted guide, let alone care for the animals without one-on-one. My mother suggested I look for day activities tailored to the blind. These don’t exist in my area. Besides, I could barely function at the leisure groups at the blindess training center I attended in 2005. My mother said I may be able to now, but I think it unlikely. These places expect a level of independence I don’t have. I mean, I’ve seen my partially sighted friend make soap completely independently after being instructed by me just once, while I still need practically hands-on support after many attempts.

I’m on the verge of crying as I write this. I completed grammar school, for goodness’ sake! Granted, I burned out the minute I left, but I did it nonetheless. Why can’t I even function at a group where people with profound intellectual disabilities can? Or am I really one giant dependent, manipulative, attention-seeking waste of resources?

My CPN is going to contact the Center for Consultation an dExpertise on me. In 2010, they were briefly involved in my case. The consultant wrote in her report that she thinks it’s weird that I’m so cognitively capable and yet cannot do simple activities of daily living such as prpearing my own breakfast. She also wrote something in the report about not knowing whether I’m eliciting care. In other words, she couldn’t say whether or not I’m just one giant dependent, manipulative, attention-seeking waste of resources either. Sigh.

Agree to Disagree

Prologue: two weeks ago, it was decided that, for two weeks, I would not be allowed to attend my day activities center in the afternoons. The reason was three new clients would be joining us and that would mean there’d be less support for me – at least while they get used to the day center. This made me quite unquiet. I wrote about this for Five-Minute Friday last week too, struggling to write a long enough, contextual enough post to be search engine-friendly within five minutes. Then I saw that people did prologues and epilogues to their posts that apparently do not count towards your five minutes of wrting time. So I decided to do this too. Here is my actual piece.

Yesterday, my staff asked me if I’d been feeling calmer now that my day activities hours were cut. I didn’t respond initially. Later, I did, assuming she had said, not asked, that I was calmer now.

I told her I feel awful each afternoon. Of course, the group is quieter without me, so I could see where she’d be coming from if she wanted to keep me out of day activities longer. I didn’t assume she had my best interest in mind – or at least the manager, who decided on these matters, didn’t. I’m not intellectually disabled, so I’m not the day center’s primary target population. As such, if there’s a disruption in the group that involves me, I’m the one who is out.

Indeed, today, I was informed that my day activities hours will remain as they were for the past few weeks. It was all in my best interest, the staff tried to say. Well, agree to disagree.

Epilogue: I was quite distressed by this whole thing during the day. Then I remembered someone’s comment on my FMF post from last week, that God never closes a door without opening a window. On Thursday, I will have a meeting with my day activities and home support staff, my community psychiatric nurse and the local authority social consultant. I hope this meeting will yield some positive results.

Linking up with Five-Minute Friday again.


Last week, it was decided that, for a while, my day actvities hours will be cut. It was also suggested that my current day activities center, which caters primarily to people with intellectual disabilities, may not be the best fit for me. I’m not intellectually disabled, after all. I’m autistic, but if you’re of at least average intelligence, somehow that doesn’t count as a developmental disability.

I had to accept this, to surrender to the decision made for me. But I decided not to give up. I am okay with this being a temporary thing, but I don’t want to be shoved around like a cart. I’m a person, after all. I know I don’t fit neatly into one dsablity label box. I am both blind and autistic and have mental health issues.

Over the past week I alternated between fight and surrender. When surrendering, I was depressed and didn’t feel like there’d ever be a place for me. I even pushed my husband away, because I wasn’t sure I could choose between him and proper care. Now I know this is a false dilemma.

When in fight mode, I felt energized. I’ve been making phone calls, thinking up next steps. I have an appointment with my community psychiatric nurse on Monday to discuss how to proceed.

It doesn’t help this wasn’t the first time I fell between the cracks care-wise, but in a way, it does. I know how to navigate the system, after all, and I know not to surrender to a poor quality of life.

I am linking up this post with Five Minute Friday. The prompt this week is “surrender”.

Cuts to My Day Activities Hours

And again I really didn’t get to write as much as I’d like to have done. The past week was quite busy. I had my first session of movement therapy on Tuesday and a meeting with my nurse on Thursday. Actually, I would’ve had a session with my CPN, but she’s off sick. I was so grateful that my nurse asked whether I wanted an appointment with her instead, as I really needed to talk.

I’ve not been doing well lately. I’m very irritable and easily overloaded. I switch a lot between being completely in my “rational mind” and feeling terribly emotional. I try to use my DBT skills, of course. Not that I’ve come far on the formal DBT course I do with my CPN, but I’ve been doing it by myself. I do an okay job when I’m not overwhelmed, but once overwhelmed, all my skills go out the window.

I mostly find that I can’t handle this huge, gaping split between my (verbal) IQ and my emotional, practical and behavioral functioning. At day activities, this is becoming more and more problematic. The staff are telling me that my irritability upsets the other clients, who are “like a baby” and can’t understand. I tell them that I don’t understand stuff myself, either, but because I’m not intellectually disabled, I should somehow be able to be more capable.

Because I’m too much of a handful, my day activities are being reduced. I won’t get additional home support in exchange. This upsets me greatly. It feels as though, when I need more help the most, I’m punished for it by getting less. Again, the main reason is my IQ, because other people with significant behavioral challenges at my day activities, get more care.

“We don’t do psychiatry.” That’s my day activities staff’s reasoning for cutting my hours when I’m too irritable. The other staff even mentioned finding me another place to go. I don’t know where. I mean, day activities for mentally ill people cater mostly to those with psychotic disorders. I have experience with that and I run into the same crap I get here there. After all, people with schizophrenia can’t help reacting to their voices either.

For clarity’s sake, I’m not saying that people with severe intellectual disabilities or those with actively psychotic schizophrenia should just be able to hold it togehter. I know they can’t, but I can’t always hold it together either.

I know my staff try their best. The staff who decided to cut my day activities hours, got angry when I told her they’re expecting too much out of me. I know she’s never worked with a person of at least average intelligence who still has signiificant sensory issues and challenging behavior. I know the manager probably told her to prioritize her main focus group, ie. those with severe intellectual disabilities. It’s interesting that she refers to the other clients as “the clients”, not “the other clients”, when she talks to me.

However, I can’t keep from being reminded of all the great lengths to which the staff go to accommodate their other clients with challenging behavior. For one person, a staff goes to his group home to provide him day activities one-on-one. Two at my group get several hours of one-on-one too. I don’t ask for that, but I don’t ask for the other extreme, ie. being cut off my hours, either.

My Word for 2018

It’s already the second week of 2018 and I haven’t written about my goals or hopes or dreams for the year yet. Last year was a productive year, mostly because I finally moved out of the mental institution after 9 1/2 years. From there on, I’ve been attempting to move forward and live a healthier life in many different respects. Physically, I embarked on a weight loss, healthier eating and fitness journey. I was also referred to an occupational therapist for help with my mobility and fine motor impairments. For my mental health, I started dialectical behavior therapy.

I also started day activities once out of the institution. This is a huge accomplishment, as I could never handle the pressure of going to a day center for any prolonged amount of time. At first, I went to an industrial group, but I was later moved to a sensory-based group. This has been a very positive experience. I also started horseback riding in September and swimming with my husband in November. Lastly, I got an iPhone. All in all, I did a pretty godo job of ticking off the items of my 2017 bucket list.

It doesn’t mean I don’t still struggle. In 2017, I took two overdoses which required a night on the internal medicine ward. As I mentioned last Sunday, on Wednesday, I engaged in pretty bad self-injurious behavior at day activities. I’m still often very much stressed out.

On Writes Like a Girl, Nicole shared an interesting take on the cycle of life: she theorized that one year is for action and the next for maintenance. Her 2017, like mine, was totally about moving forward. She deliberately chooses 2018 to be a year for rest and calm. She will continue to move forward, but at a slower pace than she did in 2017. Same for me.

My word for 2018 is a word that fits in nicely with dialectical behavior therapy. The first skill we work on in DBT is mindfulness. Mindfulness is pretty much hyped up and I’m not too sure I fully understand it. Even so, I think it’s an important skill. Like Nicole, I need to do less and be more. My word for 2018, for this reason, is simply (or not so simply): be.

This doesn’t mean I don’t have goals for 2018. For example, I do still want to continue my healthy living and weight loss journey and set myself a new goal weight for the end of the year. However, I’m taking this slowly. After all, I’d rather lose the weight slowly and keep it off than lose it rapidly only to gain it all back.

Other than this, I don’t have any goals that require me to reach a certain end result. I mean, I’ve set myself a goal of keeping a jornal, but I’ve not set a requirement of how often or how much I need to write. I also really hope to blog more this year and I think I’m finally ready to ditch my mediocre Dutch blog and move my focus entirely back here.

What is your word for 2018?

First Week of 2018

Oh my Gosh, it’s beginning to get boring: I haven’t written on this blog in almost a month. I want so badly to write more in 2018, but instead of wrting on this blog, I’m writing brief entries in my journal on my phone. I love it, don’t get me wrong, but I love my blog too.

It has been on my mind for a while to start writing in diary style on my blog. Of course, I can’t share everything I can in my private journal here, but I can share some things. I love the personal mental health bloggers who share what it’s like living with mental illness on a day-to-day basis. So for this purpose, I’ve created the “Diary” category on my blog. Feel free to skip these entries if you’re not interested in them, but if you are, I’d love to hear your thoughts. Today, I’m sharing about the first week of 2018, obviously.

The year didn’t start out that well. I was a bit overloaded and stressed out. I was perseverating on finding a good journaling app for my phone, because I badly wanted to start journaling privately again in 2018. I’ve tried a few apps on the computer and a dozen websites, but I can’t find any that work. By 12AM Monday, I said a quick “Happy new year” to my husband and sister-in-law, who was celebrating with us, only to return to my phone again. In the end, I found a great app: Dyrii. Still, judging by how easily I write this post versus my journal entries, I’m finding using Notepad on my computer is still easier than my iPhone.

I had been going to day activities as normal between Christmas and New year’s, so I only had Monday off, but it felt rather strange to return on Tuesday. I had been informed before the holidays that we’d be getting three new clients in my group at day activities in January. For those who don’t know, I go to a sensory-based group for people with severe intellectual and multiple disabilities. All clients except for me need help with their personal care. The reason this group still fits me is that I’m very easily overloaded and prefer the sensory way of learning. We currently have one group of six clients, including me, in the main room and two clients who are very easily overstimulated in the adjacent room. Come January, I and two of the other current clients would move into the adjacent room with these two clients who are already there. As it turned out, that hasn’t happened yet, because the new clients aren’t there yet.

The total group size will grow from eight to eleven. We won’t get extra staff. This was a stressor to me, as was all the talk about the one-on-one for two clients that needs to be well-arranged in order to make this work, as well as the talk about a client needing one-on-one for meals. It was suggested there’d be no more activities but just meals and personal care moments. This suggestion was made on Wednesday, when I was already pretty badly overloaded and stressed out. I tried to calm myself by thinking I could use my computer or phone if I wanted to do something but there’d be no support available. So I retreated into the adjacent room to use my phone, only to be overwhelmed by people yelling in the corridor. This sent me into full-blown meltdown. I mean, if I can’t use the adjacent room without being overwhelmd now, how will I do so once my two fellow clients join me? I know these are the quietest clients, but still.

Looking back, I am lucky that my staff didn’t see the entire event. I banged my head against a wall, which my husband later asked about whether it got me suspended from day activities. I only then realized that it could have. The only part my staff witnessed was me trying to run away and being pretty irritable. My staff took me to the snoezelen (sensory) room and I had to stay there for fifteen miutes. Then she returned and we talked stuff through.

I called my mental health team, which is a kind of team that always has a community psychiatric nurse on call during office hours, as soon as I got home. The on-call CPN advised me to always have a PRN Ativan with me. I used to always have one with me until my last overdose, when my husband took them away. I haven’t needed it since. The on-call CPN also advised me to call the out-of-hours phone number I’d been given last week whenever I need it. I had been hesitant to call them during the new year’s week-end, as I reasoned my husband was home so I should be able to work out things with him. I haven’t needed to call them since speaking to that CPN though. In fact, I’m pretty calm now. Maybe I needed to melt down in order to calm down again.

Attachment Disorder vs. Autism: An Overview and My Personal Experience

I am currently reading the book A Guide to Mental Health Issues in Girls and Young Women on the Autism Spectrum by Judy Eaton. I’m only halfway through the second chapter and it’s so incredibly validating. The book talks about misdiagnosis and co-occurring diagnosis of many psychiatric conditions in autistic girls and young women. I can relate to so much of it.

One concept that I found resonated particularly with me was “secondary misdiagnosis”. This refers to a situation where, while a woman was diagnosed as autistic initially, somewhere along the way, her diagnostic records “disappear” and she is rediagnosed as something else. Yes, that’s me! The book has a UK-based focus and I have been told quite often that, in the NHS, your records automatically move where you go. This is not the case here in the Netherlands: you have to transfer them yourself. Apparently though, in the UK, records can disappear too.

In the second chapter, the author discusses misdiagnosis of autistic girls as having an attachment disorder, disruptive behavior disorder or (emerging) personality disorder. Today, I will talk about attachment disorders.

In August of 2016, I demanded an independent second opinion on my autism diagnosis, which my psychologst had removed, for the first time. My psychologist told me she’d set things in motion, but would have to consult with the brain injury unit’s psychiatrist first. After all, my having sustained a brain injury shortly after birth was her primary reason for removing my autism diagnosis. As she returned, the weirdest diagnostic process I’ve ever seen, emerged: she started negotiating diagnoses with me. She said she was willing to diagnose brain injury-related personality change instead of the personality disorder she’d initially diagnosed me with, generalized anxiety disorder and an attachment disorder. I took time to think and eventualy ignored the attahment disorder thing, while reluctantly agreeing to the rest. We still used DSM-IV, after all, where you have to have endured “pathogenic care” to be diagnosed with attachment disorder.

In DSM-5 and the newest edition of the ICD, which was published in 2016, your early childhood still has to have been less than ideal, but the criteria leave room for milder forms of less than optimal care, such as your parents not having been very nurturing. I guess in my case, even with perfect parents (which I don’t have), my premature birth and three months in the hospital would suffice for the current “inadequate or inconsistent care” criterion for reactive attachment disorder.

However, the criteria for RAD say that the child cannot be diagnosed with it if they have an autism spectrum disorder. I understand this doesn’t mean autistic children and adults do not have attachment issues, since I for one do. However, when someone is diagnosable with autism, they cannot be diagnosed with RAD too. In other words, my psychologist ought to have ruled out autism – which she did a pretty poor job of doing – before trying to label me with RAD.

There are several features of attachment disorder that overlap with autism and particularly with pathological demand avoidance. For example, children with attacchment disorder as well as those with PDA can be superficially charming (in order to get what they want), indiscriminately affectionate with unfamiliar adults and inaffectionate with primary caregivers. Both are often defiant or manipulative. They also both can be controlling or bossy. Children with RAD are however more likely to be cruel to animals or other people or destructive towards property. They often show a preoccupation with such things as fire, blood, death or gore. Autistic children as well as those with RAD may avoid eye contact, but RAD children do make eye contact particularly when lying.

Judy Eaton outlines several distinguishing features between autism and attachment disorder. In the ICD-10, the following are mentioned:

  • Children who have a reactive attachment disorder will have the underlying ability to react and respond socially.

  • When abnormal social reciprocity is noted in children with reactive attachment disorder, it will tend to improve significantly when the child is placed in a more nurturing environment.

  • Children with reactive attachment disorder do not display the types of unusual communication seen in children with autism.

  • Children with reactive attachment disorder do not have the unusual cognitive profile often observed in children with autism.

  • Children with reactive attachment disorder do not display the types of restricted interests or repetitive behaviours seen in children with autism.

I definitely see how I have attachment issues. I am usually more open to strangers than to my own parents. Particularly as a teen, I’d also direct most of my aggression towards my mother. I could also be quite defiant. I however also definitely have communication oddities, repetitive behaviors and restricted interests and an unusual cognitive profile. I never “recovered”, though that could be blamed on the fact that I lived with my apparently inadequate parents till I was nineteen. Or it could be that I’m autistic.

Food Plan: A Week of Healthy Eating

It’s been six months since I embarked on my weight loss and healthier living journey. It’s been going with ups and downs. I lost five kilograms in my first month of attempting to lose weight. Then, I slowly lost more then gained it back. At the end of October, I was at the same weight I’d been at in early July. IN other words, while I had maintained the loss of those first five kilograms, I hadn’t lost any more. Now over the month of November, I lost three kilograms again. I now only need to lose two kilograms to no longer be obese. This means that the goal I set last June, which was to be just plain overweight rather than obese within a year, is still within reach.

One exercise I came across when reading journaling guides for overeaters, is to imagine one day of normal eating. The idea is to imagine what it’d be like to eat normally for a day, then put that plan into actual action. The thing is, even when I was still deep in disordered eating, I usually had a few days of mostly normal eating before I’d down a whole bag of sweets and/or a bag of crisps and/or other unhealthy foods wthin half an hour. For this reason, I’m going to change the exercise a little and create a food plan for a week. Most things I have already implemented, in fact.


I will eat a healthy breakfast each day. This means I’ll eat lower-fat yoghurt with muesli. I used to eat crunchy muesli most days, but I changed that to regular fruit muesli about a month ago. This contains significantly less calories than crunchy muesli, but it does seem to contan somewhat more sugar. Last week, I bought muesli with nuts, which I think I’ll like better than fruit muesli anyway and which is less sugary.


I used to eat two slices of bread with peanut butter. Last month, I decided to get sandwich spread instead, which is much lower in calories, although some people tell me it’s not necessarily healthier.

In addition to bread, I started eating a few carrots, tomatoes and cucumber slices for lunch each day. I love to snack on vegetables and particularly the carrots make me feel full too.


My husband cooks and serves my food, so I generally trust him to make me relatively healthy meals and limit my portions. Each Friday though, he gets us fries with a snack. When I restarted my weight loss journey a month ago, I thought I’d have to let go of this, but I don’t. Weight loss doesn’t mean never eating any unhealthy food, after all. That’s why I’m pretty wary of Overeaters Anonymous’ idea of abstinence as a goal. I much prefer Eating Disorders Anonymous’ idea of balance.


I can have fruit or rice crackers as snacks when I’m home from day activities in the afternoon. During morning coffee at day activities, I should try to turn down the gingerbread, as it’s pretty high in calories and I don’t even like it very much.

On Wednesday, we have a cooking activity at day activities. I love it and am so glad I have been able to fully participate in it, including eating, while still losing weihgt. The staff usually serve it, so they decide on portion sizes.

Every other Friday, my mother-in-law accompanies me to the pharmacy to pick up my medications. I have decided that I can still buy myself something to snack on at the grocery store that’s near the pharmacy, but it needs to be something relatively healthy. For example, the last time, I had chicken bites. Then, I ate them all in one sitting, which I’m not planing on doing tomorrow. I’m still undecided as to whether I can get myself the chicken bites again and hope I’ll restrain myself and leave some for my husband, or whether I should get something else. Here, the goals of abstinence versus balance are competing again.


I usually have coffee, tea and water throughout the day. I can have a fizzy drink or juice every once in a while. I should aim for at least two liters of fluids each day. Not even so much for weight loss purposes, but more to prevent getting constipated.

Doctor #WotW #PoCoLo

So I had two doctor’s appointments this week. First, like I said last Monday, I was seeing my GP on Wednesday regarding my mild motor skills impairments. A little explanation is in order. I have always had fine and gross motor skills impairments. Since they are so mild, they have always seemed practically non-existent in the face of the major disability of my blindness. As a child, I held my parents’ hand till I was at least twelve. This was however seen as a lack of self-confidence. I did use my white cane when prompted, but since I had trouble accepting my deterioratng vision, I apparently chose dependence on others over the white cane. When I did use it though, I often used it as a walking stick.

Now I’m no longer ashamed of the white cane. I in fact prefer to have it with me even if I walk sighted guide, because then at least people will see I’m blind. Still, despite having had countless orientation and mobility training sessions, I still cannot seem to use the white cane in its proper way. Even so, I feel very unsteady when walking independently. I would love to learn to improve, because, even though there is no route in our village I’d like to learn to walk without anyone accompanying me, I’d love to be able to walk without holding onto someone’s arm. That would enable me to go to events on my own by accessible transportation, which I now avoid due to not wanting to ask strangers to be my guide.

As for my fine motor skills impairments, I cannot eat neatly no matter how hard I try. I find this terribly embarrassing. I also struggle with preparing my own breakfast, pouring myself drinks and other skills that require the use of both hands. I can perform tasks that require just my right hand just fine and I can use my left hand for support, but activities that require coordinating both hands, just don’t work without adaptations. I’m curious to know whether such adaptations exist.

My GP looked up what seemed to have been a letter written by my previous GP in the institution. It said that I was born prematurely (correct), had a stroke as a baby (not correct, it was a brain bleed) and developed hydrocephalus as a result (correct). The resulting impairments are diagnosable as acquired brain injury. I seem to have read that when a person sustains a brain injury before age one year (or three in some countries), it’s not diagnosed as an ABI. The correct diagnosis, well, I don’t know. Motor impairments are, or so Dr. Google tells me, often diagnosed as cerebral palsy, but then they have to be severe enough, which I doubt mine are. I didn’t question the doctor though, although the confusing diagnosis did frustrate me more than I’d hoped it would. After all, my intention was to ask about treatment options.

The doctor told me that, if I’ve been stable for over two years, there’s no hope for neurological improvement. This timeframe is longer in children, but since I’m now 31, I’ll pretty much have to learn to live with my impairments. Still, I might benefit from occupational therapy and possibly a little physical therapy to help me learn to use adaptations and learn compensatory strategies. The doctor is going to contact the nearest rehabilitation center to ask whether an occupational therapist can take me on. My blindness may be an issue though, in which case I’ll need to see an occupational therapist at the blindness agency. They don’t often know acquired brain injury though. Seeing both is not an option insurance-wise.

I also saw the mental health agency’s general doctor on Thursday. The physical health screening with the nurse and all the things I didn’t know about my childhood conditions, were what had prompted me to see my GP. I discussed the GP visit for a bit. Then we went over the lab work the doctor had ordered. Everything was within the normal range except for one thing, creatinine, which was a little high. The most likely reason for this is that I don’t drink enough water.

With these two appointments and my having been having them on my mind all week, my word of the week is going to be “doctor”.

The Reading Residence
Post Comment Love

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