Parenting a spectrum of girls

Posts tagged ‘occupational therapy’

Social Skills

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M and her best friend

When M was younger (2, 3 even 4 years old) she was petrified of other people, even children.  She got along well enough with the other kids at daycare, and had been with almost all of them since they were infants.  But if there were new children in Sunday School, or if a child tried to talk to her or play with her somewhere like the playground or the zoo, she would scream loudly and hide behind me.  I never knew what to say to the child and parent, I always felt so bad that she hurt their feelings, and at the time she did not yet have a diagnosis to explain her behavior.

Adults always wanted to say hello to her and give her little trinkets because she is so pretty (petite blond girls get a lot of attention) but she would run away from them and hide, or cry.  I always graciously accepted the necklace/coin/etc on her behalf and say she was very shy.  Once she was in OT the therapist noticed if some other child was in the same gym she ignored them completely and didn’t even look at them or acknowledge their existence.

At the beginning of school this year, standing outside waiting for the school doors to open she would hiss at the other students, growl at them and hide behind me.  She had no friends, no one played with her and she stood alone by the para pro and cried for me during recess.  After she started the Risperdone in late October she stopped hissing, growling and hiding.  Around the same time we had her first conferences.  Her teacher told me that all of the other children liked M and wanted to be friends with her, but she refused to play with them.  Sometimes she would play with one child but when two were playing together she refused to join them.

Eventually M got better.  Her social skills are still not great, but she does have a few children she enjoys playing with.  Her difficulty reading social skills really feeds into her anxiety, and simple things such as losing a game or being touched can make her very upset.  She does a lot of parallel play but she loves to play games and can sometimes follow other children’s’ leads and play together, especially if it is her best friend, who she got to have a play date with today.  She still prefers to play with the para pro at recess but also will play on her own or play a game with one or two other children.

Also today, M had a “meet you there”, where her class got together (those who wanted to) at the movie theater for a free movie.  She sat next to one girl who she likes because they have a lot of similar difficulties and because this girl’s mother and I have become friends.  They talked some and enjoyed sitting together.  She also called out hello to the other children as they came into the theater.  It was good to see her interact with other children, even if much of it was superficial.

The center where M attended OT does have social skills classes that they recommended for M, but at least for right now we are not going to go that route.  Many children with Asperger’s, especially females, want to make friends but don’t know how.  M does not have the desire (most of the time) to have friends.  She wants people to be nice to her, but other than her best friend she is OK with ignoring people most of the time.  She cries for her best friend when they haven’t seen each other in a while.  Since her social situation does not bother her, we are happy too.  She is very good at using her manners unless she is too anxious to talk.  The rest of it is just who she is and I love her the way she is, I have no desire to “fix” her or change her.  If some day she wants to know how to make friends, read social cues or be able to “appropriately” respond to people in public then we may go the social skills class route.  In the mean time, I am very nappy to have a quiet girl who does not hiss at people anymore.

Food fight

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Everything is finger food…thankfully this is a bagel. 🙂

One common issue with an Autism Spectrum Disorder is food.  Many children on the spectrum will only eat food of certain colors or textures or even limit themselves to as few as one or two particular foods for long periods of time.  For a while when M was younger she avoided some food textures, especially soft or squishy foods, but for the most part she has been a great eater and we have not had to worry about her diet and nutrition.  In fact, last summer she tried crawfish, and loved it!  Now she wants to go to Red Lobster for her next birthday (sigh…McDonalds was so much cheaper!  lol)  The main side effect of her medication is weight gain, and she did gain 6 lbs in 4 weeks, but after that the weight gain stopped and she had previously been a little under weight, so the doctor was actually really happy with that.  He credits her ability to maintain a healthy weight with her high activity level and most of all her healthy diet…she loves fresh fruits and vegetables!

So we have not had issues with WHAT she will eat…our issues have been with HOW she eats. When M was a toddler, she was a legend among our family and at the daycare she attended.  People still talk about her, and the way she ate.  She was the MESSIEST CHILD EVER!  I am not exaggerating.  Anything that went into her mouth she had to spit out, touch, then finally put back into her mouth to finish eating.  She never used utensils and even with her hands was not very accurate at getting the food into her mouth.  It went everywhere.  She needed a bath after every meal.  I work with infants and toddlers, and I know that some of them, especially the ones that really love their food, can be a real mess sometimes.  But M was a disaster at every meal, far past the time she should have been using utensils and eating neatly.  At least she did not disappoint for the big first birthday cake photo.  My oldest daughter neatly ate hers without a mess at all…no good photo/blackmail opps.  M, on the other hand, was a beautiful mess.  It was a lot of fun!  🙂

By the time M went to Occupational Therapy shortly before age 4, she would use utensils sometimes, only if they had plastic handles.  Restaurants have been a nightmare for several reasons, but one of the reasons at that time was that if I forgot to bring a plastic handled fork in my purse especially for M, she would have a meltdown and not eat.  She was still very messy.  By the time she finished her first round of OT about 6 months later she was, although not super neat, still a much cleaner eater and better with her utensils.  I’m not exactly sure when it happened, I think around the time M started school this year, she stopped needing plastic handles on her utensils.  M still often has food on her clothes after a meal, sometimes even all over her pants and shirt.  Tonight she had tilapia in her hair.  But overall she is much better.

The past few months, M has pretty much stopped using her utensils again.  I am not sure how much of this is fine motor difficulty, how much of it is sensory related, and how much (if any) of it is related to her eyes not working together.  It will be interesting to see if she is able to use utensils again after she gets used to her glasses (which should come in in the next day or so).  It was pretty odd to watch her tonight eating her dinner (tilapia, potatoes and peas & carrots) entirely with her hands.  She even scooped the panko breading (insisting it looked “gross”) off her fish with her fingers.  Yuck!  I will take it, though.  I would much rather have a 5 year old who eats with her hands than face some of the food challenges so many other parents have to work with.

XOXO

Hugs & Kisses…that’s one of the things we love about babies & little kids, right?  Especially us parents.  K was an affectionate child, but always full of boundless energy and curiosity she didn’t sit still long enough to really get a good cuddle.  A is my cuddler.  She is always in my lap, hanging on me, wanting to be held by me, hugging and kissing me.  And I love it! 

M never wanted much to do with anything as an infant.  She was a disgruntled baby.  As a toddler and preschooler she would sometimes give hugs to certain people, and she would tolerate a tight hug for a minute.  She would never give kisses and hated to be kissed.  Light touches, whether on purpose or accidental, made her scream and fall apart crying at times.  This, along with her extremely rigid need for routine, were the things that first brought the word “autism” into the list of possibilities.

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It is pretty painful to be rejected by your child.  M would not let me cuddle her, kiss her, sing to her, or any of the things I so wanted to do.  She really just wanted to be left alone.  But when it came to the sensory aspect of light touches and being sensory over responsive, the OT for the county school district helped me really see it from M’s viewpoint.  This is how she explained it:

Imagine you are walking down an alley in an unfamiliar city after dark, and you are lost.  Something brushes your leg and you jump, maybe scream.  Your heart is pounding.  Then you look down and see that it is a cat, and you are able to slowly calm down.  If the same thing were to happen on your own street during the day, you wouldn’t worry at all.  Or if it were to happen again your brain would know “oh, it’s the cat”.  But M is ALWAYS in the dark alley lost, and every time the cat touches her it is the first time.  Her brain doesn’t acclimate to sensory experiences and begin to register them as “normal” the way ours do.

Pretty intense, huh?  I sure felt a lot more sorry for her and a lot less sorry for myself.

After a year or so of OT, M became better.  She will sometimes give kisses to her dad and I.  Sometimes she will accept a kiss.  Hugs are still quick and tight but she rarely melts down at a light touch anymore.  I am so glad she doesn’t live in that sensory dark alley all of the time anymore.  She still has a lot of anxiety and rigid thinking, but we are working on one thing at a time, to help her feel more happy and comfortable in her body and in the world.

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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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.  🙂

Thankfulness- Day 4

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Today I am thankful for the team of people who have helped M progress to where she is today.  In this picture, taken yesterday, she had just spontaneously climbed into my lap to cuddle!  This has not happened at all until very recently.  She also used to freak out about having her picture taken…now she likes it!  This morning we stopped at Starbucks on the way to a play date with her best friend.  On the way out a gentleman held the door open for us, and I thanked him.  Then as she passed him, M looked at him and said “thank you”.  That was huge!  Certainly more than I could have expected or asked for.

M absolutely still has struggles.  Sounds bother her a lot and she has recently started flicking her hands in front of her face (a new stim) when she is overwhelmed, especially when A is crying for any reason.  Her drawing and writing are considerably behind what is developmentally appropriate; she still can not even trace shapes.  But thanks to her OT, her dyspraxia is far less severe…she can dress herself for the most part, ride a bike with little help, and actually play with toys and use imagination (though she still prefers sorting to actual playing).  Thanks to her psychologist and psychiatrist we have seen drastic improvements in her behavior and sensory problems, and even to some extent with socialization.  Her daycare teachers & director from birth to 5 provided her a safe place to develop and be loved for who she was.  Her teacher, parapro & dean at her school this year have been amazing with her.  Though we went through 3 parapros in as many weeks, the end result couldn’t have been better, and M is able to stay on “green” (good behavior) almost every day.  Even the Early On program locally, though they did not feel she qualified for services due to her age appropriate language development at age 3, gave us good resources, suggestions, and the social worker and OT came to our home to give us some guidance and materials.

And of course, our amazing friends and family who have been there for us every step of the way.  Especially those friends who know exactly what we are going through and have been a tremendous resource (yes you Rachel, Kim, Amber, Courtney & Suzette).  It really does take a village, and the bigger the special needs the bigger village you need.  We have been blessed with a big, wonderful village that have helped all of us grow together.

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. 

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