Parenting a spectrum of girls

Archive for October, 2012

D-Day +2

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M in a fire truck (with funny Halloween fangs)

Ok I’m exhausted and have to be up at 6am, but I need to write this.  It’s begging to get in writing and time is flying by.

Tuesday was D-day.  As in Drug-day, or M’s first appointment with the psychiatrist, in which she was very much herself.  This means spitting, hissing, growling, rolling around on the floor, knocking over furniture & trying to run away.  The good news is, I really needed the psychiatrist, Dr. H, to see this, and understand that it gets worse.  I loved Dr. H and I guess A did too (she had to come along for the ride), because she kept giving him lacing cards to play with and answering the questions he was asking M.  (It also turned out well to have her along as she provided a stark contrast to M and proof that it is not poor parenting!  Lol)

Dr. H asked a lot of great questions and listened really well.  M eventually answered a few short questions, then shut down and became absorbed in her lacing cards.  I kind of felt like I got to tell her whole story to a professional for the first time…the Neuropsych she saw didn’t even  seem to listen much. 

So in the end the Dr. Prescribed a very low (starting with the lowest possible) dose of an anti-psychotic medication that has shown successful in treating symptoms of autism like aggression, anxiety and sensory issues.  I had anticipated this answer, but for some reason as soon as he said it my heart sank and my palms became sweaty.  I was really going to put my little 5 year old daughter on a serious medication.  I was scared of her being over-medicated and zombie-like.  I was scared she would be lethargic, sluggish, not herself.  But I filled the script, reminding myself why I made this tortuously difficult decision to medicate my child.  Her quality of life has been diminished (she admitted to me in a very rare totally with it moment that she is worried or angry ALL THE TIME), and she was a danger to herself and her sisters.  She also very recently started displaying self-injurious behaviors.

Tuesday night I gave my little one a pill crushed and mixed in applesauce. 
Disclaimer:  she knew she was taking the medication and what it was for.  While she hated being at the doctor’s office, she knew she would probably start taking medication and what it would do, and was perfectly ok with that.
Dr. H said within a week (2 at the very most) she would be much happier and less anxious, would stop her aggressive, angry behaviors and actually hug me and tell me she loves me!  I thought that was a bit much to promise, but ok.  He also told me I would be able to talk to her about her actions and she would be able to understand me, and that was my hope.

Wednesday morning and afternoon M would start to have a meltdown as usual, I would say something reasonable to her, and she would stop and carry on like everything was fine.  Wednesday afternoon, on the way home from school, I had a CONVERSATION with M!  A full conversation…about SCHOOL!  (Before I could not ask her about her day without her throwing shoes at my head and trying to get out of the car.)  She answered all of my questions sweetly and thoughtfully, with detail!  Before things she said didn’t add up and she was very fuzzy on details when she even made any effort to talk.

Today, Thursday…no meltdowns until dinner, which was very late…past bedtime actually.  We had a full, busy day and she was hungry & tired…any kid might meltdown in that situation.  And as far as her meltdowns recently, it was very mild.  She didn’t talk as much, but didn’t get angry either and was still more willing and clear than so far all year.

It’s only been a couple days, and of course there are still struggles.  I had to walk M into class today and talk to her teacher since M would not speak…and she cried when I left (but she stayed in her seat, usually when I have to walk her in she runs out the door or clings to me).  She still gets upset when kids approach her in the morning waiting outside the school.  But she is already ever so much better!  I’m already feeling like this is a miracle drug that is lifting a fog and bringing her out of the world of Autism and into my world.

But amidst this great relief there is a heaviness and a lot of questions.  Am I changing or denying her “who she is”?  Am I telling her I don’t love her or she’s not good enough without the medication, that I want her to be different or would change her?  Does she WANT to be different, to be in my world, or does she prefer the Autism world she retreats into?  Do I have the right to pull her into my world?  I would ask her these questions and get her permission if I could, but she could never answer them, at least not the way she has been.  And is it fair for her little sister to have to worry for her safety and worry about her big sister running away or getting hurt, or for me to have to constantly scan the environment for things M might destroy or use to hurt herself or others?  I’m not sure there are any answers, but it goes to prove there is no easy answer when it comes to the decision whether or not to medicate your child.

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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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