Masks and Alter Personalities

This week, Ginny Marie’s spin cycle prompt is “masks”. I saw this topic being announced a few weeks ago already, and immediately knew I wanted to participate. Now that I’m sitting in front of the computer, a thousand thoughts spin through my mind.

Throughout my life, masks have played an important role. Not literal masks, but the figurative masks people put on, or are made to put on, to appear like something they are not. In all honesty, I’ve worn and been made to wear so many masks that I don’t know whether at a given moment I was being sincerely me or was wearing a mask.

I have many alter personalities. They’ve come to play less of an important role now that I no longer carry the diagnosis of dissociative identity disorder, as I did from 2010 until 2013, but they’re still there. These alter personalities represent aspects of my life I feel forced to disown, either by some internal or external force. Two of them have always played the most important role.

The first one is Jane. She is a strong, independent young woman. She doesn’t need much help from others. She is intelliigent and she knows it. Her only negative characteristic is that she’s a bit distant and she would rather live alone than for example with my husband. Maybe it’s because she was formed when the least of my priorities was finding friends, let alone a partner. Independence was much more important. I mostly acted like her when in high school, doing overall well. If anything, I asked for help too little.

The other is Carol. She is a young woman too, but pretty severely disabled. She has trouble with self-care, engages in self-injurious behavior, has meltdown after meltdown. She can speak, but barely communicatively so.

There are others, too. Teens, like Elena, the cheerful one, or Brenda, the angry teenager. There are young ones too, like Milou, the curious eight-year-old, and Suzanne, the seven-year-old with too many responsibilities. Some represent hopes for my future, like Esther, who is a mother. Carol and Jane, however, are the most important in shaping my current self-image.

Many people, in today’s rehabilitation-based society, expect me to disown Carol and embrace Jane. She may be a bit schizoid, but she is intelligent and independent and that’s what matters. Many people not involved in my care see her as the authentic me, not realizing she is as much a mask as Carol is, and as much a mask as all the others are.

The thing is, all these parts or masks or alters make up me. I have learned over the years to stop having to put an alter’s name to my every action. That is improvement, but it doesn’t mean the alters weren’t there when I still dissociated significantly, and it doesn’t mean they’re not there now. When I go into a welcoming Mommy community, I’m still Esther. When I craft, I’m Annemiek. When I play with Barbie dolls, I’m Little. Yet I don’t show it openly or even covertly all the time.

I still have a very unstable sense of self. That may be why I wear all these diagnostic labels that I talked about in previous posts – they help me understand myself. So do all the alter parts. I may not be putting them on like a mask to the outside world anymore, which means I’m no logner diagnosable with a dissociative disorder, but I do still inwardly experience them.

“Preemie Syndrome”

As I said in an earlier post, I was talking with my psychologist on Wednesday, and she mentioned not being sure I’m autistic after all. She said I might suffer from the effects of brain injury. Now my parents say it hasn’t even been proven that I had a brain bleed, but it is proven that I had hydrocephalus, which alone can cause brain damage.

I explained to my psychologist that we’d discussed this problem diagnosing some people on a list for parents of older preemis on which I’m one of a few preemie adults. On this list, we coined the term “preemie syndrome” and there were even speculations about what might cause it. For example, former preemies are known to have on average a much smaller orbitofrontal cortex (OFC) than full-term children. The OFC is a part of the forebrain speculated to pay a role in among other things obsessive-compulsive disorder. Now I have never had an MRI done so have no clue of the size of my OFC, and besides the whole point of “preemie syndrome” was that it needed to be as inclusive as possible to the disabilities experienced by former preemies.

So what is “preemie syndrome”? It is a constellation of often ill-explained difficulties and deficits in a former preemie. These include:


  • Motor deficits, often not diagnosed as cerebral palsy. Developmental coordination disorder, “clumsy child syndrome”, fine and gross motor delays. Hypotonia or hypertonia.

  • Cognitive impairments: learning disabilities or low IQ. Difficulty thinking logically or dealing with abstractions, literal-mindedness, inability to comprehend or follow simple directions, sometimes good rote memory, short-term memory loss. Test scores may be higher than actual functioning. Inconsistent performance.

  • Speech problems./LI>
  • Feeding problems: reflux and/or failure to thrive.

  • Dental problems: missing teeth, need for braces, high palate.

  • Low vision due to either retinopathy of prematurity (ROP) or cortical visual impairment.

  • Autism, Asperger’s Syndrome, Pervasive Developmental Disorder, “autistic traits”.

  • Social dysfunction: few or no friends, may not recognize social cues, oblivious to social space, low self-esteem.

  • Behavioral problems: immaturity, self-regulation problems, poor impulse control, intense need for order and routine, stereotypic (self-stimulatory) or self-injurious behaviours, disorganized behavior, inability to prioritize.

  • Attention deficit (hyperactivity) disorder (ADD/ADHD) or similar traits.

  • Sensory issues: sensory integration dysfunciton, sensitivity to noise, increased startle reaction, “tactile defensiveness”, strong aversion to certain tastes or textures.

  • Depression or bipolar disorder.

  • Anxiety disorders or obsessive-compulsive disorder (OCD). Peculiar phobias.

  • Reactive attachment disorder (RAD) or attachment issues.

  • Precocious puberty.


I didn’t randomly make this list up myself even though I have/had all traits except for speech problems and precocious puberty. I think Helen Harrison was the first to make a list, though I had this one on my website when it was still online.

Of course, if “preemie syndrome” were to become a recognized condition, it would still be very vague. It would require children to get an extensive evaluation to determine their actual weaknesses and strengths. The same, however, goes for diagnoses like brain injury that aren’t particularly helpful except in justifying the need for support.

I still feel that children and adults who struggle in life need to know their strengths and weaknesses and what might help them reach their potential. They may learn this from people who had similar experiences, be it premature birth or brain injury or whatever. They may also learn from people with similar strengths or weaknesses, such as in my case people with social communicative difficulties or “autistic traits”. With a diffuse concept like “preemie syndrome”, people need both. I do feel that preemies could also benefit from the sense of community in connecting with other former preemies. Unfortunately, as I’ve said before, not much support is out there for adult preemies.

Asperger’s as Mere Genius

Just came across a question on an Asperger’s page on Facebook. Someone asked whether we could name any historical genius without Asperger’s. Most people couldn’t, but this made me think of the validity of the whole Asperger’s concept in highly intelligent people, and whether it’s not just their genius that makes these people appear autistic.

If everyone who is a little quirky gets labeled with Asperger’s, it erodes the meaning of Asperger’s as a disability. I know that probably the people who can’t name a genius without Asperger’s, don’t see Asperger’s as a disability. That’s fine with me, but I for one do see it as a disability, having an Asperger’s diagnosis and clear difficulty functioning.

That’s in my opinion what it boils down to. Most geniuses can function quite well in life. They may have some trouble making friends with the average person, but that’s because they are highly intelligent and the average person isn’t. I did not start suspecting an autism spectrum disorder in myself until I found out that I couldn’t interact with my classmates at the high level high school either, while around 30% of them were gifted. In this sense, I feel the fewer labels the better, and I don’t see why you need a disability label if you’re going to see it as all positive. We already have the label of giftedness for that.

The reason I eventually sought an autism diagnosis, was not that I had a hard time making friends actually. It was because I was overwhelmed with even the simplest of daily tasks. If I didn’t have this many problems, I would be fine just being gifted. It wouldn’t mean I’d have absolutely no issues, because after all I’d still be a misfit among all average peers. But autism isn’t about fitting in or being able to make friends. If that were the case, many more people would qualify for the label of autism than is currently the case.

I was discussing this whole labeling thing with my parents yesterday. My father, who says I’m merely gifted and not autistic, said that Hans Asperger probably didn’t intend merely quirky kids to get his label. Rather, the kids he intended the label for were most likely unable to have any form of meaningful interaction and were completely preoccupied with their own special interest. I wouldn’t be an Aspie in this situation, but neither would anyone on the Facebook page. Now I don’t necessarily agree with this analysis of what Asperger intended his label to mean, and I don’t have his study at hand to look it up. However, DSM-5 backs up this portrayal of autism spectrum disorder in its description (and to some extent criteria) of ASD. I am not sure myself that I meet DSM-5 criteria for ASD, and I can see that many people diagnosable as Aspie under DSM-IV, don’t.

In my case, this has nothing to do with the criterion about the symptoms limiting people’s independent functioning, like many parents of severely autistic children say. I am most definitely impaired in my functioning. The problem areas I’m having are just not the core ASD impairments. But I am impaired.

For most all-genius-people-are-Aspies proponents, the opposite is true: they do have core ASD symptoms as their primary reason for being misfits, but they aren’t limited in their daily functioning. In this sense, I can totally see why parents of severley autistic children would not want them on the autism spectrum. Why lump people with no impairments together with those with severe impairments? That’s either stigmatizing the people with no impairments or invalidaitng the people with severe impairments. One of the main reasons people are fighting to keep Asperger’s on the autism spectrum, is because we most definitely have impairmetns and are in need of support. If Asperger’s is reduced to mere genius and the accompanying and inherent misfit status, I am not saying I want no part in it. Identifying as an Aspie would then be similar to identifying as my Myers-Briggs personality type, after all, and I do participate in places for that. It would, however, mean that I and many others who do have significant impairments, would need an additional label to justify their need for support.

I’m a Complex Case

One of Mama’s Losin’ It’s prompts for this week is the phrase “Hi, my name is ___ and I’m a ____”. This phrase made me think immediately of what makes me different from other people. That in turn made me think of a discussion I had with my psychologist yesterday. She was talking about my diagnosis and, before she went into detail, started out by saying I’m a complex case.

I have been processing this discussion, since it stirred up a lot of emotion and contorversy. Let me explain. She isn’t so sure I’m autistic after all. For now, she’s not changing my diagnosis and is continuing with the referral to the Leo Kanner House, the Dutch top specialty center for autism. She however tried to prepare me for them saying that they don’t see me as autistic after all. And for the first time that my diagnosis is being questioned, I can actually agree.

Before this, questioning my autism diagnosis meant saying that everything is normal for a blind person, for an intellectually capable person, you name it. In other words, it was saying that I don’t have that many real problems. It reminded me of my parents’ visit with my doctor on the locked ward two weeks into my hospitalization, in which they more or less said that I was just loooking to be different for attention.

My old psychologist had gone along with this idea to an extent. My new psychologist didn’t. She said that I might not be autistic, but I’m certainly having significant problems in many areas. She has a background in neuropsychology and in fact articulated what I’ve been thinking for a while now: that my problems signal brain injury. I objected that, though I had a brain bleed shortly after birth, brain injury is usually prefixed with “acquired”, meaning that you had a life before your injury. She said the diagnosis is no longer that strict. Unfortunately, a good neuropsychological evaluation is hard because of my blindness and high intelligence, so it’s unlikely we’ll ever find “proof” for all my difficulties.

I’m not really looking to collect labels, although that is what I end up coming across as when I find support for my every (provisional or self-identified) diagnosis. Rather, I am looking to connect to people who have similar problems to me and to find out what helps them. Being a complex case isn’t easy in this respect.

Mama’s Losin’ It

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 an dautistic 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, wich 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.e 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.

Preemie #WotW

As I said on Friday, I’ve been pondering my premature birth a lot lately. This week I’ve been pondering it so much that I’ll choose “preemie” as my word of the week. For those who don’t know, I’m myself a preemie, not a parent of one. This brings about some unique challenges that I’ll share below.

Being a preemie, I am a statistical survivor – I “beat the odds”. Back in 1986 when I was born, it was the era of infinite possibilities for neonatology, and doctors were treating and keeping alive whoever they could. That’s changed. In 2001, I became aware of the fact that in the Netherlands, preemies born at under 25 weeks gestation, are not treated. It isn’t that the doctors here can’t – they’re probably as capable as doctors in the United States, where 23- and 24-weekers are treated and surviving regularly. Rather, doctors here believe that the quality of life of preemies born at under 25 weeks, would be too poor. My treating neonatologist, Dr. Willem Fetter, was quoted several times in newspapers as saying that sometimes he meets a former preemie and thinks: “What have we done?!”

This sentiment does not seem to be confined to the Netherlands. As Sue Hall says in For the Love of Babies, neonatologists no longer have an urgent need to save everyone they can. In the U.S., however, parents have a say.

I was born in 1986, in the era of infiinite possibilities. When, after I suffered a severe brain bleed, my parents questioned my quality of life, Dr. Fetter bluntly informed them that the staff were keeping me alive and not to interfere. I at one point read an article on abortion survivors, and it included the statistical survivors, living in areas where many abortions take place or for example those with Down Syndrome, but also the “wanted survivors”. Wanted survivors were those whose parents contemplated aborting them but ultimately didn’t. I can very strongly identify with the “wanted survivor” statement, because, even though my parents had no choice to keep me alive or not, they did eventually have a choice to raise me or not, and they chose to raise me. Wanted survivors commonly feel that they somehow need to prove their right to life, as if their parents might retroactively abort them or in my case take me off life support. This is not possible of course, but I can completely relate to this feeling.

That being said, over the past week I’ve felt a roller coaster of emotions as I read two books. One is For the Love of Babies by Sue Hall, which I reviewed on Friday. The other is Preemie Voices by Saroj Saigal. I will review this book too when I’m finished. It contains a collection of letters from former preemies who are now in their thirties. They were born between 1977 and 1982 and all weighed less than 1000 gram or 2lb 3oz. Some have disabilities and some do not. The aim of this book is to provide hope to parents of the preemies of today, but the author is also honest about the fact that some preemies still end up with severe disabilities. Of course, the book is directed at parents.

I feel validated at finally having found a book which includes the voices of adult preemies, after searching unsuccessfullly for a similar book published in like 1996 I’d heard of. Yet I still feel alone, because no-one had the experiences I did. Of course a book, unless I write it, cannot represent my perspective. Maybe I said this on the blog before, but if I ever write my autobiography, it’ll get the title of the 2004 newspaper article in which Dr. Fetter first uttered the “What have we done?!”. Its title is more optimistic: “Some former preemies will later go to university.”

The Reading Residence

Book Review: For the Love of Babies by Sue Hall

A few days ago, I stumbled across For the Love of Babies by chance and immediately wanted to purchase it. I love medical stories, and I am a former neonatal intensive care patient, so this boook seemed perfect. And it’s not been disappointing.

Synopsis

What takes place in the neonatal intensive care unit is the high drama of real life. The author pulls back the curtain to show the inner workings of this area in the hospital that is unfamiliar and frightening to most people. Hall, a longtime neonatologist and former social worker, writes with caring and compassion about the challenges each fragile baby must surmount in order to survive and thrive, all the while conveying a sense of life-and-death urgency that permeates neonatal intensive care. She expertly weaves the social and emotional threads of each family’s journey into their baby’s story, and also speaks candidly about the stresses and difficult decisions that neonatologists and their tiny patients’ parents routinely face.

Review

In this book, Dr. Hall talks about a variety of patients. Most people do know that premature infants will spend time in the neonatal intensive care unit (NICU), but that so will babies with severe birth defects and babies born addicted to drugs, is a lesser-known fact. Although a large number of Hall’s stories are about preemies, there are also stories about babies who need to be in the NICU for other reasons, and stories about preemies who happen to aso have severe birth defects or are born addicted. The babies Hall treats range from a baby born with trisomy 18, a formerly thought to be lethal birth defect, to a baby born with Down Syndrome to a fifteen-year-old mother, and from a relatively “normal” preemie to preemies experiencing the most devastating complications. Some of the babies die, but the majority survive.

Hall includes in her stories not just the medical aspects of caring for NICU patients, but also the social and emotional aspects influencing the families and babies. For example, she ponders a mother’s reasons for using cocaine during pregnancy, leading to her child’s premature birth and ultimately death. Hall describes with caring even the bleakest scenarios. For example, one mother delivers a baby with anencephaly, a birth defect causing the baby to have virtually no brain and die shortly after birth. This mother had previously lost a baby to stillbirth who was just whisked away from her by the obstetrician. In the case of her anencephalic baby, Hall makes sure the baby and family are all as comfortable as possible and have every opportunity to love the baby until her death and even care for her afterwards.

Hall shows us not only the families’ and babies’ struggles, but also her own. For example, it’s clear that she feels disappointment with the substance-abusing mother abandoning her child shortly after he can go home, and sadness for the baby she resuscitated in the delivery room but who died of sudden infant death syndrome several months after going home.

Lastly, it is clear that Hall is very much in favor of giving parents as much control over their babies’ care as possible. I remember hearing about my own situation in which my treating neonatologist told my parents that the staff were keeping me alive and not to interfere. Usually in Hall’s stories, parents want more aggressive treatment than she recommends, sometimes with good outcomes, such as in the case of the little girl who sings to Hall at her unusually late follow-up appointmnet at four years of age.

Hall ends her book with several appendices full of advice for parents of NICU patients. I only skimmed through these, but I’m sure many parents will find the advice extremely useful.

Book Details

Title: For the Love of Babies: One Doctor’s Stories About Life in the Neonatal ICU (SmashWords edition)
Author: Sue Hall
Publisher: WorldMaker Media
Publication Date: July 2011

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Racism and Black Peter

Last year, not for the first time but for the first time I did notice, debate sparked in the Netherlands about the St. Nicholas celebration and the color of “Zwarte Piet” (Black Peter), St Nick’s helper. I didn’t pay much attention to the debate, but when a number of my Facebook friends signed the “Pietition” to keep Black Peter black, I did so, too. I had never thought of Black Peter as referring to slavery. Possibly, it’s because I didn’t know that he was decorated rather steretoypcially with red lipstick, earrings, etc. More likely, it’s because I possess White privilege and I horribly neglect racism in my attempts at educating myself about minoriyt points of view.

Around the discussion last year, my husband introduced me to a point of view which said that apparently White people’s enjoyment of the tradition is more important than Black people’s dissatisfaction with it, and this is racist. We, and I include myself here, often say that Black people who complain are just “professional niggers” shouting “racism” at every opportunity to do so. Then again, I for one am pretty well-known for calling out ableism (discrimination of people with disabilities) at every opportunity at least on my blog.

I understand both points of view. White people insisting on tradition probably aren’t otherwise racist, rather more likely having trouble shifting perspective from their own privileged stance to the minority person’s. Of course Black Peter has got to be black, everyone knows this, because I’m in the majority here and I know. On the other hand, Black Peter does have a traditional helper role, which could easily be interpreted as a reference to slavery (and it is likely that the historical St. Nick had slaves too, though they may not have been Black). Tradition is important for many people, but can’t we shift it a little bit for some people’s comfort?

St. Nick will arrive in the Netherlands in Gouda on November 15 this year. The St. Nicholas committee has decided to include a majority of black Peters, but to include yellow-faced “Gouda cheese” Peters too. That way, they give both parties a little of what they want, but I doubt either will be satisfied. Particularly some people supporting traditionally black Peters have radicalized over the year a bit towards a more hostile form of racism rather than mere ignorance.

Mama’s Losin’ It

To My Baby Self

I have been thinking a lot about my life in the context of premature birth. It may be because I’m currently reading For the Love of Babies by Sue Hall, a neonatologist writing about her experiences treating preemies and other sick babies.

Today I also came across a writing prompt for PTSD survivors, to write to yourself before any trauma occurred. Since my trauma started right with my NICU experience, and I’m over most PTSD symptoms now, I will instead write to my baby self reassuring her that things’ll be okay in the end.

Little baby, born too soon
You feel so insecure
But let me tell you, you’ll be fine
Of that I am sure

You are too young to realize
That you are here to stay
In this world that may be harsh
You will be okay

Times are hard on you, you feel
So often in pain
If you could tell me, would you say
That your life is in vain?

I will tell you, it is not
Your life is worth the fight
I am your older self and feel
That you and I came out alright

Some people may think of you
That you should not survive
But guess what, you did exactly that
And I am here and thrive

You will have many hardships ahead
But please persist and cope
I will wait here to remind you
Not to give up hope

Motor Deficits: Dyspraxia

I have had mild motor deficits all my life. Since I don’t know whether they have ever been diagnosed and if so, as what, I try to learn about conditions such as developmental coordination disorder, and strategies that work for people with similar problems.

Dyspraxia is similar to developmental coordination disorder (DCD). DCD is a somewhat misleading name for the whole construct of dyspraxia, as dyspraxia can, besides fine and gross motor skills, also affect speech as well as sensory processing. Dyspraxia is seen as a subtype of sensory processing disorder (sensory integration dysfunction) where the brain has trouble interpreting and responding to the body’s movements..

According to the National Center for Learning Disabilities (NCLD), there are several different types of dyspraxia. These are:


  • Ideomotor dyspraxia: where a person has trouble executing single-step motor tasks such as waving goodbye.

  • Ideational dyspraxia: problems occur with multi-step tasks, such as brushing teeth, making a bed or putting on clothes in the right order.

  • Constructional dyspraxia: affects ability to establish spatial relationships, for example, moving an object from one place to another correctly.

  • Oromotor dyspraxia: affecting the ability to control the muscle movements necessary for pronouncing words.

Dyspraxia can cause many different problems at various stages in development. The NCLD lists these difficulties by age. Young children may have trouble learning to crawl, roll over, walk, jump or skip. In adition, they may have trouble in the following areas:


  • Prnouncing words and being understood.

  • Developing hand preference.

  • Sensitivity to touch, such as clothes touching the skin, hair-combing or tooth-brushing.

  • They may bump into things frequently>./LI>

As children age, the following difficulties may emerge:


  • Poor pencil grip and handwriting.

  • Difficulty with fine motor tasks such as buttoning clothing and cutting with scissors.

  • Problems in playing sports.

  • Difficulty sensing direction.

  • Difficulty speaking at a normal rate or volume.


Additionally, children with dyspraxia may have trouble with social skills and have phobias or obsessions.

Teens and adults with dyspraxia may have problems in the following areas:


  • Speech control, such as volume, pitch, articulation.

  • Writing and typing.

  • Over- or undersensitivity to touch, light, smell, taste, etc.

  • Personal grooming and other self-help tasks.

  • Cooking and other household tasks.

  • Driving

The Dyspraxia Foundation lists many other symptoms of dyspraxia, such as motor overactivity, excitability, messy eating, lack of sense of danger (probably due to sensory seeking behaviors, as an example the Foundation lists is jumping from heights).

I do not have all symptoms of dyspraxia. For example, I am very much right-handed, though an old educational psychologist’s report says my lateralization was poor (at age eight). Some symptoms can also be explained by my blindness (such as my bumping into objects). I am, however, told that my messy eating, oromotor difficulties, difficulties with complex tasks such as making a bed, balance problems, and sensory over- and underresponsivity, are not normal for a blind person. I do not truly want a label for these, but I am finding that it is extremely hard for me to explain these problems to my treatment team, and they affect me to a great extent.