Parenting a spectrum of girls

Posts tagged ‘Aspergers Syndrome’

Struggling not to Compare

I wasn’t really sure what to write about today.  So many ideas.  Such a rough day.  I don’t even have a picture today, and I’m not even totally sure where I am going.

M had a rough day.  The last 2 1/2 weeks have been a bit rough, today seemed even more so.  M was alright in the morning, for the most part, so maybe it started with me.  Maybe it started with the observation.

As some of you know, I decided, at the ancient age of 31, to go back to school.  This was 2 years ago, almost exactly 2 years ago that I signed up for my first class, and going 2 classes at a time (and taking classes every summer) I am slowly but surely chipping away at my Associate’s Degree in Early Childhood Education.  Where I was before and what influenced this decision is a long story of its own, but one day I will have a dual Master’s in Early Childhood Education and Special Education…even if all of my children graduate before I do.  😉  Today for one of my classes I went to observe M’s best friend at a different school.  These girls have been best friends since they were about 6 months old and I am so glad that they are still buds.  Her mom and I get them together as often as we can and when M is upset she will often say she doesn’t love anyone in the world except her BFF.

When you see them play together you really don’t notice much difference, sometimes no difference at all.  The only time you can really tell that they are not both neurotypical little girls is when M is overstimulated or something happens unexpectedly to throw her into a meltdown but even that has decreased since she started her mood stabilizers.  Today, however, I got to see her BFF in a different environment, a learning environment and a social environment with a number of other children.  So today, I really got to see how different they are, and it made me sad.  I saw her BFF at recess playing and planning and laughing with the other kids.  I heard her read aloud a number of books…with expression.  I saw her draw a detailed picture and write a story to go along with it.  I saw her quietly follow the rules and ask the teacher when she needed help.  I saw her touch other children without being rough and not needing her teacher’s attention constantly and not yelling out answers or comments.

It’s not that M is always or never all of these things, but watching her BFF and the other children, who were all the same age as M, was difficult because I saw how different she really is, especially from her BFF.  It made me wonder if they will continue to be best friends as they get older.  I can not imagine what it would be like for M not to have her BFF, this is the one friend she loves so much.  She will often tell me she doesn’t have any other friends, especially at school…sometimes she interacts with the other kids but other times she insists the para pro and teacher are her only friends and she only plays with the para pro at recess.  It also made me worry about my decision to put M into young 5s K this year, kind of a remedial kindergarten for kids who are old enough but need an extra year to prepare.  I really felt strongly that she needed an extra year to get used to the routine, rules and expectations as well as to grow social-emotionally even though she was mostly ready academically.  Her BFF was in Kindergarten this year, so next year when M is in Kindergarten her BFF will be in first grade, and they will never be in the same grade.  They will not graduate at the same time.  M will always be behind.  I know neither of them are aware, or would even care if they were, right now.  But in a year from now, in middle school, in high school?  Will it contribute to them growing apart, or to M feeling “different” or not as good as her BFF?

I know I’m probably being dramatic and pessimistic and reaching.  I am usually very optimistic and positive about M’s struggles and life in general.  But some days I do get a little sad and worry about the future for my sweet girl.  I don’t think it would be as bad if she weren’t going through a difficult time right now.  She has hurt A several times over the last few days, pinching twisting and hitting.  Lots of her angry words that scare me and make me sad.  She hasn’t wanted to read or work on any of her new skills, but just to play Go Fish and listen to Taylor Swift and sort the business cards in her wallet.  Right now she is asleep on her bedroom floor with a body pillow and weighted blanket on top of her and Taylor Swift blaring from her MP3 player through her headphones.  It was the only way she could calm down after initially bringing her down a little by letting her suck orange yogurt through a straw.  Her sensory issues have been getting worse lately, probably because of her anxiety from being on spring break, then going back to school, then me being gone pretty much all day Saturday.  A is having problems with her asthma and if she starts coughing M screams at her to stop, throws things at her, tells her she’s doing it on purpose and she is going to move to Texas to get away from us all so she can’t hear A cough anymore.  So I know it will get better…M will feel better and calm herself better and most importantly I will be the happy optimistic parent I need to be in the morning.  In the meantime I need to remember how silly it is to compare and that M does not do what she does on purpose or even really out of anger, but out of fight or flight response (ASD/Anxiety) and out of an overwhelming compulsion to say and do certain things over and over to help her calm down (OCD).  She is doing the best she can, as well all are.  She is a very brave girl and I need to be brave for her, too.

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.  🙂

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.

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Oh the places she is going

When your child has special needs, there are…lower expectations.  M’s therapists, teachers and I have not expected that she would do some things as early as her peers, or that she would do other things at all.  I was told by her OT last year that they could not help her any more with her fine motor skills and that she would likely need AT (assistive technology) for writing.  That she may even need a full time aide due to her various issues.  We haven’t expected her to ride a 2 wheel bike, tie her shoes or completely dress herself (buttons, snaps etc) any time soon if at all.  We figured it would be a while yet before she could read, or write anything other than her name (which is difficult to read due to backward & misshapen letters).

We haven’t pushed M the way we do K and A.  Maybe pushed isn’t the right word…we just haven’t asked her to work as hard or as advanced, because we know what A and K are capable of (K was reading by the time she turned 3, A is almost there with some sight words at 3 1/2).  M would not do well at all with pressure or high expectations due to her already overwhelming anxiety and need for sameness.  A and K thrive on new and challenging experiences.

Yet despite everything, the hurdles, the lower expectations and more lax learning schedule at home and at school, M is all of a sudden thriving.  It just had to be on HER time, because she was ready to try.

This weekend we introduced the idea of giving M the next size taller bicycle, with no training wheels.  Last year M (at 4 1/2,  5 years old) finally was able to pedal a bike.  Even with the training wheels she often had a lot of difficulty and became easily frustrated, but when we got the bike out this year she was riding great!  Unfortunately she balked at the idea of a different bike and it caused a meltdown.  Later at a friend’s house she really wanted to ride and the bike available did not have training wheels.  Well, this determined little girl took right off on that 2 wheel bike without hesitation!  She still needs practice to ride well/for long on her own 2 wheel bike but she is trying and succeeding for short intervals and it is amazing!

Here is a video of M on her bike (A running along behind).

https://www.facebook.com/video/embed?video_id=515129191862187

For the longest time M disliked any books at all and did not like being read to, could not pay attention or recall any information about a story.  I think a combination of being in school, her medication and our repeated efforts to find books she likes and to read to her and around her (we are all avid readers) helped finally change that.  Since late this fall, early winter she has let me read to her every night, at least.  When she was comfortable with reading, and different types of books (she initially could only handle board books) I decided it was time to see if I could teach her to read.  This started just a week or so ago, and I used the Biscuit books, teaching her one word at a time, the same way I taught my oldest daughter to read.  She caught on to the first word pretty quickly and showed she was ready to learn.  The next day I moved to the second word and started to introduce a 3rd word at the end of the story.  The third day she took off, reading better than 1/3 of the words herself!  The last 2 days I have had her read different Biscuit books, one she had never seen before, and she could still read many of the words.  She even sounded some out which I never ever thought I would see her do, since she has had a very hard time with written words and sounds.  This is the girl who just 6 months ago literally had a fear of reading & said she never wanted to learn to read!

So lesson learned…children will develop in their own time, when they are ready.  No need to rush them, the results will be happier for everyone if they are allowed the space they need (or the challenge & extra push, depending on the child).  Also, don’t listen when someone tells you what your child will/will not, can/can not do.  Just know your child and give them the kind of support they need and they will surpass your wildest expectations for them!  M does not have an aide (there is a para pro for the class but she does not have a 1:1) and she has a vision problem (which I will talk about tomorrow) that is likely causing her writing problems and when corrected she may well not need AT at all.  🙂

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.

The wrong turn

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Tuesday M and I were leaving the psychiatrist’s office following a brief, positive recheck were he was impressed with her progress and more healthful appearance (ie she gained 3 lbs and wasn’t screaming & knocking over furniture).

As we left the building, which I am not too familiar with yet, we turned the wrong way in the parking lot and ended up at a dead end behind the building.  Just outside the vehicle, off in the grass a very short way, was a large, beautiful doe.

I put the car in park and we both ahhed over the magnificent creature, which just stood there looking at us for the longest time.

I rolled the back window down so M could get a better look.  She stuck her arm out the window and waved.

Hello she said.

She waved, looked, and smiled for a few more minutes, the deer still motionless.  Then I told her we had to go.

Goodbye, deer  she said, waving.

Then we drove the other way, on our way home.

I thought about how grateful I was for turning the wrong way, or we would have missed that beautiful, precious moment.  I intended to head straight home, but God had something better intended for our time.

Autism is kind of like that.  Even for those of us who advocate for our children, who insist they are different, not less.  That they just see the world differently, and that we wish we could be like them.  All of that is true, and I wouldn’t change M or any of my children for anything in the world.  But there are those days, the bad days when the meltdowns are relentless, when I have to be afraid she will hurt herself or someone else…when I think “this is a wrong turn.  My life isn’t supposed to be like this.  My child isn’t supposed to be like this”…and then the beautiful moment when she sees patterns in everything, when she jumps with excitement when she sees a fire truck or singing at the top of her lungs to Taylor Swift…and I remember, she isn’t like other kids because God had something better, more beautiful, intended for our family.

In Her Own Words

I hung up my phone from checking my messages.

“Who was that, Mommy?”

“Oh, just your doctor’s office calling to remind me of your appointment next Tuesday.  You remember the doctor that gave us the medicine you take?”

“Yeah, I remember.  Why do I have to go back?”

“Well, it’s just to talk to us and see you and make sure the medicine is working.”

“Is the medicine working?”

“Yes, it’s working very well.”

“How do you know it is working?”

“Well, because you’re happy now.  You’re not angry or worried all the time.”

“Yeah, the medicine’s working.  I can tell.  Because I can think now.”

“What do you mean?”

“I can think now.  Like, I can think about all kinds of different things, and I can think about what is good and what is bad and choose to do the good thing.  I can think about things I am supposed to do and everything.”

“What about before the medicine?”

“I just couldn’t think about anything before the medicine, I couldn’t think at all.  Now I can think and choose things and everything.”

Wow…not just that she feels that way and can feel the difference, but that she could express that!  I was so completely amazed.  🙂

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