Parenting a spectrum of girls

Posts tagged ‘dyspraxia’

Play

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M being spider girl at the playground

Play…it’s what kids do.  Right?  Except that M never did.  She would sometimes copy other kids, do what they were doing, so at daycare it looked like play.  Outdoors she was in her element with all of the gross motor activities: running, jumping, climbing, swinging, spinning, she never got tired of any of it.  A day spent outdoors was a good day for M.  We bought her lots of different kinds of toys.  Toys that matched with her obsession (fire trucks), toys they had at daycare, interactive electronic toys, a play kitchen, you name it.  We tried everything, and M still never played with any of it.  She did not interact with toys at all.  While concerning that M was terrified of interacting with people, it was even more concerning to me that she did not interact with toys, she did not play.

Of course, as with so many other things with parenting special kids, I tried again and again to find out what the problem was and how I could help her…and no one would listen to me.  I talked to her doctor at the time, teachers, other parents, and the social worker and team we worked with to get her an IEP.  I always got one of two responses “of course she plays with something” or “I’m sure it’s normal”.

When M was almost 4 I took her for an OT evaluation at a therapy center for children (the IEP team agreed she needed OT and some other help, but she didn’t meet the criteria to get it through an IEP because she didn’t have severe enough speech problems…they can not qualify for OT alone.)  The first thing the therapist evaluating M did was ask what she likes to play with. M would not speak to her, would only sit on the floor and fuss.  So the therapist asked me what M likes to play with. And…I lied.  I didn’t want to say again that she does not play with ANYTHING and again hear that I didn’t know what I was talking about.  So I said cars and trains.  It was kind of close to the truth, M liked to look at cars and trains, watch videos about them…I had bought her a number of Thomas cars and a track hoping to get her to play, with no luck.  So the OT got M some cars and set them in front of her and told her to go ahead and play with them.  M looked at them.  She picked one up.  And that was it.  The therapist again asked M to show her how she plays with the cars.  M became irritated and started to yell.  The therapist picked up a car and drove it around and asked M to play with her.  M got angry and threw the cars across the room, yelling and crying.  And that was as far as we got into what I was told would be about a 2 hour evaluation.

I was so relieved that not only did someone else finally see what I saw, and believed me, but she had a NAME for it!  Dyspraxia, she called it.  A motor planning problem.  M’s brain could not plan out what to do with a toy, how to play with it.  She loved gross motor activities because it  was something simple she could repeat over and over.  This is why M had a meltdown when someone wanted to make up a game…she could not process how to play it.  It was also why at 4 years of age M was almost completely unable to dress herself, unable to pedal even a small tricycle.

This is one area where OT helped M immensely.  After 6 months she could almost completely dress herself.  She started to pedal a bicycle…she could not ride nearly as well as her peers, but she could ride!  (And of course now she is on 2 wheels!)  Around this 6 month mark was also one particular event that was one of the happiest days I can remember.  M spontaneously went into her room, put on a “dress up” cat tail and crawled into the kitchen meowing like a cat!  This lasted maybe 2 minutes, but it was the first time M had EVER used imaginative play!  It was such a relief to see her happy, carefree, having fun, playing and using her imagination if only for a couple of minutes.

M still rarely plays with toys.  She prefers board games and card games where there are specific, predictable rules.  She is very upset if she is playing with someone and they try to use different rules from the ones she uses.  She also can get very upset if she loses, but she still comes back to play over and over.  But I now would not say that M does not play at all or have any imagination.  She is a very concrete, black and white thinker which is extremely common in autism, but she does occasionally play creatively with A, who loves to play things like Mommies, Going on a trip, Daycare and Doctor.  She will sometimes pretend the pop up play house is a bathtub, or pretend to be a firefighter putting out a fire in our house, or play school with K.  And this is ok with me.  I don’t want to change who she is, she doesn’t need to be more playful or imaginative, she is wonderful the way she is.  But the ability to play and use imagination at times is very important and will really help her as she grows and learns more in school.  It is a challenge to buy her gifts for birthdays and Christmas.  There are only so many Taylor Swift items or pairs of cowboy boots one girl can have, and it is still pointless to buy her toys.  And although I mostly stay away from toys and buy more games or practical items I am still a mom, and ever hopeful that I will find that ONE perfect thing she will play with and love, and so I continue to buy her a toy here and there in the chance that she might love it and play with it.  And you know what?  That’s ok too.  🙂

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Diagnosis what?!?

It seems, to people not dealing with special needs, that a diagnosis is simple.  It always seemed that way to me.  Most short or long term illnesses or diseases are easily diagnosed through relatively common tests (blood tests, radiography, cultures, etc).  Even some mental health issues are pretty easy to diagnose- depression, anxiety.  And then, of course, you might find out that some are not so easy to diagnose.

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If you have a child on the spectrum, or are on the spectrum yourself, you know it takes a lot of time and a number of tests to get an ASD diagnosis, and even then it is not an exact science.  After 2 years of different doctors, psychologist, county school district testing, I finally got a referral to a Neuropsychologist to test for it.  2 days of testing.  Uncertain results, probably somewhere between Asperger’s and PDD-NOS.  Pediatrician marked Sensory Processing Disorder, Asperger’s, Muscular Coordination Disorder (Dyspraxia), Fine Motor Delay and Social Skills Delay.  Psychologist has Asperger’s or PDD-NOS, OCD and GAD.  OT (1 year ago) had Dyspraxia, Sensory Over-Responsive and severe Fine Motor Delay  School District (2 1/2 years ago, haven’t had her re-tested yet) said Sensory Processing Disorder and mild Speech Delay, mild Social Skills Delay.  Developmental Optometrist lists Asperger’s and Convergence Insufficiency.                                 
I thought her Psychiatrist had Asperger’s.  But he showed me somethingabout her medication on her paperwork, and I saw 2 diagnoses: Asperger’s and Mood Disorder-NOS.  I don’t know what to think.  What does that mean?  Does that mean he doesn’t think her behavior was a symptom of the Asperger’s?  (I say was because much of it has vastly improved on her mood medication).  Does that mean there is something else to add to the alphabet soup?  Does it matter if it is NOS (not otherwise specified), will we eventually have a name for whatever it is?

It shouldn’t matter to me, but it does.  Like maybe it shouldn’t have mattered to get an ASD (autism spectrum disorder) diagnosis, but it did.  I needed a name, because attached to the name is a description and a list of possible or probable symptoms and possible or probable ways to help her.  I needed that diagnosis before she started school because we were both petrified to have her start school and I needed to know what to do for her, what she might experience and how to most easily describe her and her difficulties to her teachers

And then, later in the week, I took my poor Amelia back to the doctor because of a UTI.  On her form it says MAJOR DIAGNOSIS:  Croup.  Obviously croup is not a major diagnosis.  But that is apparently how they are labeling her asthma, to see if she outgrows it, so it does not show up as a “preexisting condition”.  It just seemed odd, I would have expected “reactive airway disease” which is what they usually call it when she can’t breathe well every time she gets the sniffles or something.  And it made me think again how overly complicated the diagnosis game it.  We can’t call a spade a spade, there is too much involved…insurance, IEPs, 504s & other services available or withheld.  It is comforting to me that they show
major diagnosis and that any hospital or other medical institution would certainly recognize that as code for asthma in a young child and treat it accordingly.

I think we parents of special needs/chronically I’ll children deserve honorary Ph.D.s for all of our knowledge of terminology, tests, treatments, side effects, symptoms and for generally putting up with a plethora of doctors, therapists and specialists.

The siblings

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All 3 of my girls on a family fun day

 

I talk a lot about M and her special needs (Asperger’s Syndrome, OCD, GAD, Dyspraxia, Sensory Processing Disorder, Convergence Insufficiency) but I talk less about my other daughters, her siblings.  I do occasionally post about K, age 11, who is profoundly gifted.  Less so about A, age 3, who has asthma and is likely highly gifted.  But what I really need to post about, and I don’t think we talk enough about, is how M’s special need affect her sisters.

K is significantly older than her sisters, and generally tries to avoid them by camping out in her room in typical pre-teen fashion.  She really is a good sister and does play with them sometimes, but overall they have no interests in common which is exacerbated by her high intelligence and creativity.  Just like M, her mind works differently.  Just a different kind of different.  She struggles to understand M and to be sympathetic, but it is difficult for her to even understand her neurotypical peers so it is truly a struggle.  We talk often about it and really sometimes she is the one to calm M down and give her exactly what she needs.  M loves her big sister passionately and misses her greatly when she spends time with her best friend, which is pretty much every weekend.  I was extremely touched a couple of weeks ago when K left her devotional out marked to an older page we had missed for one reason or another.  She told me this particular devotion was special to her and she wanted me to read it.  When I got to it that evening I realized it was about how God made everyone unique and special and told the story about the boy on the autism spectrum who was put into the end of the last basketball game of the season and scored several baskets.  She literally brought tears to my eyes (which doesn’t happen often, I truly hate to cry).

A loves her sister M so much.  They are 26 months apart but more like twins.  They used to never fight and play together and enjoy each other’s company constantly.  They are still best buds, but since A turned 3 and started preschool there is a little more discord in their relationship.  I think a lot of this is because A is learning to stand up for herself and realizing that M’s behavior is not always appropriate.  M also becomes upset with her more often because she is reaching M in some areas of development (exceeding social-emotionally) and because A is starting to express her own preferences versus always going along with what M wants.  Unfortunately A is often the person M takes her frustration out on, both physically and verbally.  This summer before M started on medication for her dangerous behaviors (physical aggression, talking about killing herself constantly, becoming hysterical and trying to run away or run into traffic etc) I was truly worried for A’s safety, but fortunately that is over.  M does still push, pinch, bite, hit and otherwise try to hurt though…usually A, sometimes K or myself.  We have zero tolerance for this behavior and while it is less frequent (usually high stress transition times…like spring break…) it does still happen.  She also has certain phrases that are due to the unfortunate combination of Asperger’s and OCD, which also makes them a very hard compulsion to break.  These include “stupid idiot” and “I want to kill you”, and are often screamed at anyone in her path (at home, but fortunately not at school yet), often A.  As you can imagine her self esteem suffers a little at times and her feelings get hurt by this language from someone she so truly loves.  She is the most easy-going, laid-back kid, but sometimes, especially when she is not feeling well, it is just too much and she needs extra cuddles and reassurance.  She also picks up on M’s undesirable behaviors and tries to mimic them sometimes.  Then we have to explain why, even though M is older, she can not always control what comes out of her mouth but A can.  Still, overall, they are good for each other.  A is a very loving, compassionate child who loves to play mommy, teacher and doctor and I can see her experience with M and their closeness making her wonderful at any of these endeavors.

I wish there was a support group for siblings that K could join, and maybe A later if she wanted to.  In the meantime I know I spend a lot of extra time and energy on M and she seems to get away with a lot more.  A manages to get a lot of time too, being the youngest and knowing how to use that pouty lip and big sad eyes against me as she does 😉  But I need to be conscious that as hard as tough weeks (like spring break LOL) can be for M and for me, they are also difficult for my other girls, who have no control over the meltdowns they are often in the middle of.  I need to make an effort to spend a little extra time with them and be extra understanding of them as well, as they probably also suffer from sensory overload after, say, riding home in the car with their sister screaming, kicking the door and threatening to beat them up.  ❤

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M & A, best friends & sisters.

This is what Autism looks like

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Maybe you’ve heard…or maybe you haven’t.  Being immersed in the Autism and Special Needs community I am not always sure how much is contained to Us and how much is wider knowledge.  There was a bit of press concerning the (false) suspicions that the man who was responsible for killing school children and educators in Connecticut had Autism (more specifically Asperger’s Syndrome) and that such a diagnosis could be the cause of his ability to commit such a crime.  There has been a beautiful response by the Autism community of people posting photos of themselves & loved ones who have been diagnosed with Autism and a little bit about them, saying “THIS is Autism”.

First of all I feel the need to say again, Autism & Aspergers absolutely do not make a person more likely to commit a crime, in fact people with Autism and all Special Needs are more likely to be the victims of violence.  Also, people with Autism/Aspergers are commonly very concerned with following rules & the law and have other similar symptoms that make them less likely to commit any crime than the general population.

So I now feel ready to join the ranks of my fellow Autism parents (though most of you already know) and submit…THIS is Autism:

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My daughter Margaret is 5 years old.  She loves fire trucks (especially ladder trucks) and has wanted to be a firefighter her entire life.  She loves the Beatles and especially Taylor Swift.  She sees the world in patterns and is gifted with numbers.  She can memorize how to spell words but can not read (yet, we are working hard on it).  She loves her sisters and her cats.  She has Sensory Processing Disorder, Dyspraxia, delayed fine motor & occular motor abilities, Anxiety Disorder and borderline OCD.  When she is off routine she becomes clumsy and her speech becomes very difficult to understand.  She walked early but never crawled, spoke on time but never babbled, smiled on time but didn’t laugh until after a year.  She never liked to be touched.  She loves fruit & vegetables and the playground but does not like to go to school.  She is an amazing soccer player because of her single minded concentration & a great dancer because of her ability to memorize the pattern of the routine quickly.  She can also flip herself into a no-handed somersault! 
Life is not all roses.  She IS on mood stabilizing medication for her rigidity and sensory problems, which along with her anxiety started to produce long, frequent, violent meltdowns.  They have helped immensely to help her with self control and also help her verbalize 100% more than before.  In her words “when I take the medicine I can think, and I couldn’t think about anything before”.  She does still have a lot of anxiety and prefers to be alone often…but she will also show physical and verbal affection, which she could not do before. 
Margaret is beautiful.  She is a miracle.  She works hard for what we take for granted (after a year of occupational therapy she was finally able to usually mostly dress herself at age 5).  She would never intentionally hurt someone.  Some people believe those with Autism do not have empathy.  Margaret has an abundance of empathy.  Even though it is difficult for her to read nonverbal cues & understand another person’s view as being different from her own, she is always worried about the well being of others.  We have to shield her more even than our other children from media …if she knew anything about what happened that day in CT I’m afraid her heart would break from pain & worry for those families, and it might take a long time to bring her from that terrible place of pain, worry & sorrow.  She can’t even watch a movie about a dog who loses his family & finds them again…she cries the whole time they are apart because she feels bad for the fictional pup.
So this is the face of Autism.  A beautiful, sensitive little girl whose family loves her more than anything in the world.  There is nothing wrong with her; she is not broken…she is simply different.  Beautifully, wonderfully, perfectly made by God to be exactly who she is…and I couldn’t be more happy or proud.

Moving Mountains

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M playing dress up

Why today’s dance class brought tears to my eyes:

One year ago this June…

M is at a children’s occupational therapy clinic that came recommended by a number of people including the county Early On program for children with disabilities.  She is being evaluated for sensory processing problems- we know she is overresponsive- and fine motor skills, etc.  We were told the evaluation would last around an hour or more.  We walk into the evaluation room which is like a big play room.  The therapist has M try to draw some shapes, all she can draw is a circle and she has a very immature grasp.  No surprises.  She asks what M likes to play with.  M wants to ride the bike but can’t do it on her own- also not a surprise.  M won’t even look at the toys.  She doesn’t play with toys at home, either.  Never has.  All of the doctors and team at Early On said that wasn’t anything to be concerned about but it seemed wrong to me.  I told the therapist M likes cars, and she gives M some toy cars.  M won’t play.  She tells M to drive the cars around.  M gets mad, starts crying and throws the cars.  We weren’t in the evaluation for 15 minutes.  I will never forget phrases like “severe dyspraxia” “inability to interact with toys or pretend play” “unable to even participate in testing” and “intensive occupational therapy for at least 6 months”.

And it was true.  M had a hard time climbing stairs, couldn’t dress herself or ride a bike after she turned 4.  She had never played with toys or used any imagination at all.  I was worried, but this confirmation that something was seriously wrong shocked me.  People talk about mourning when their child receives their diagnosis…I was actually relieved when I got her Aspergers diagnosis this spring, but the severe dyspraxia did have me depressed a little.  Thankfully she responded really well to a year of occupational therapy, and after just 6 months she could dress herself almost fully, ride her bike (not well, but much improved), and actually started occasionally using some imagination & pretend play.  I will never forget the first time she used her imagination. She came into the livingroom from the kitchen crawling and meowing like a cat with a cat tail from the dress up box attached to her pants.  It was so amazing, even though it only lasted a few seconds.  Can you imagine never having seen your 4 year old PLAY???  So sure she can’t hold a pencil correctly or use her hands for very long (her fine motor skills tested in the 2nd percentile at her neuropsych eval), but she can (sometimes) play!  And ride a bike, and not fall off chairs & run into walls like she used to!  And then today…

M was at dance class.  She would not participate.  She sat on the floor stimming, fluttering her hands by her face and chewing on them, a vacant stare on her face.  The wonderful teachers kept gently coaxing her but she didn’t want to join.  Finally, maybe because they were doing some acro, which she loves, she decided to join the group about half way through the class.  It was her turn to do somersaults, which they were just learning to do with teachers’ help.  Not M!  I wish I could have taped what happened next.

M ran up to the mats and flipped into a somersault with no hands and proceeded to jump up & right into another no handed somersault 3 or 4 times until she came to the end of the mat!  It was amazing!  This little girl who a year ago didn’t have the motor planning skills to even dress herself or “drive” around a toy car can do handless somersaults, way beyond what other 5 year olds can do.  She also handled the backward somersaults & cartwheels beautifully.  Other parents were saying things like “wow, look at that little blond girl!” Instead of “aw, look at that poor little shy girl by herself”.  At the end of class one girl said goodbye to her and she even said “bye” back!  She didn’t look at her, but she said bye.  That’s an improvement for her.

I am so proud of my girl.  Of how hard she has worked to move an inch where other kids naturally mastered some of these tasks long ago.  Sometimes it seems like we haven’t made any progress, like when she is threatening to kill me for the 12th time in a day.  Lately her behavior has been worse and I have been fighting to get her to take her Omega 3 supplements, which help.  So today I really needed to see that.  To remember how far she has come.  How far we have come, because I have been researching and pushing for answers, therapies and help since I first became concerned when, by 6 months old, she had never once laughed.  It is a long journey but she is doing it.  In a pretty large dance class filled with her neuro-typical peers, this little aspie is rockin’ the acro.  That takes a lot of motor planning.  I am tearing up just thinking about it.

My girl is moving mountains.  She will be ok. 

Teaching a Child with Autism to Read

Teaching a Child with Autism to Read.

A very useful article I found. M has dyspraxia and visial motor problems with her autism, and has little to no interest in books or being read to much less learning to read. I plan to use a lot of these ideas over the next year…hopefully she will be reading before she is 6. Everyone else in my family loves books and reading, it’s difficult and strange for us that she dislikes reading so.

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