Parenting a spectrum of girls

Posts tagged ‘education’

Gifted

I have been thinking the last couple days about this.  It is something I forget about in all of the meltdowns, therapies and delays. M is also gifted.

She is not gifted in the way that K is, or even in the way that A is, but in her own awesome way.  When she was tested by the Neuropsychologist, one of the tests that they did was an IQ test, and she tested just in the gifted category.  This was at age 4, well before she even started to read, so he said it may be a little bit higher if we test her again in a year or so.  Gifted, however, means so many things and expresses is so many different ways.  So what does it mean for M?

It means that she is very visual.  M sees patterns everywhere, in everything.  Things I would never think to look for, but she LOVES patterns. At the beginning of this year they started to learn about A/B patterns (ie blue, red, blue, red…) M immediately grasped the concept and took off running with it, creating and talking about A/B/C/D/E/F/G or AAA/BB/CCC patterns all of the time.  She can also do things quickly in her head that she can not do on paper.  Since her hands and eyes do not work properly, she does math and spelling in her head.  She was spelling words well before she could read.  While she was unable to recognize a word on paper, if you asked her how to spell a word (the name of anyone she loves, cat, salad…) she could spell it for you.  Her biggest strength is definitely math.

Next year in Kindergarten she will learn some basic addition and subtraction.  M can already add and subtract double digit numbers in her head.  AND she can multiply by 0, 1 and 2.  All of this she can do with no help…she can even add a series of numbers and do story problems.  This is where I am afraid she is going to become frustrated…while she can do all of this in her head, she can not write one bit of it.  She can write her letters somewhat but a math problem on paper makes no sense to her.  I don’t think the numbers make any sense because in her head she is seeing 5 of something and adding 4 of something to that to get 9 of something.  Numbers are not concrete, they are vague representations.  I actually heard Temple Grandin (my hero!!) speak about this when she was talking about different kinds of thinkers and learners at an autism conference I attended last spring.  She is going to have to learn to train her brain to associate numbers with the actual number of something she sees in her head.  Same with money; a dollar will mean nothing to her, she will have to associate it with something she knows that costs a dollar to understand its value.

All of this aside, her mind is amazing.  She is doing so much more than her peers, or even those a grade above her.  It will be difficult but important to keep her challenged in math and to not become frustrated and start to dislike it because of the challenge of putting it on paper.  Fortunately K has been instrumental in teaching M math (she is the one teaching M multiplication) and hopefully she will continue to be able to help her.  K also loves math and her brain also does math in a different and fascinating way.  Math is certainly my weak point and I am useless by the time they get to decimals and fractions, so I will need all of the help keeping her challenged in math I can get!

Never let someone’s difficulties make you think they are not brilliant.  A delay in one area (or even several areas) does not mean that a person is not intelligent, or even gifted.  It is important that we see the whole of every person, each different and complicated thing that makes them who they are, and nurture each part of them.  2e (twice exceptional) children are so amazing, and we can not neglect to challenge them and help them build their gifts in the midst of helping them with their difficulties.

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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).

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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.

Thankfulness- Day 5

Today I am thankful for my job.  I am so blessed to get paid (though admittedly not much) to do what I love.  I work at a daycare in a Christian school with infants & toddlers, and I love every minute of it.

Most of my adulthood was spent working in the insurance and finance fields.  The first “real” job I was able to get was at an insurance company, and if you want to increase your salary, well, once you have experience in a field you’re pretty much stuck there.  After my third child was born my wonderful bosses let me work a 4 day week, but I was still commuting at least half an hour each way, making my days with daycare drop off and pick ups a good 11 hours without seeing my girls.  I also grew quite disillusioned with my work.  I then worked for a “higher end” insurance/investment company, and I was tired of trying to care about helping rich people make more money.  I was also unhappy with my work situation where I was suddenly working for 3 people, one of whom was demeaning, dishonest, verbally abusive and really a pretty scary person to work for.

One night I was holding A, who was not quite a year old, rocking her to sleep and not thinking about anything.  I clearly heard God say (in my mind), “you know what you want, you just have to ask for it”.  I knew he meant my work situation, so I prayed for a local part time job with decent pay in a field where I would actually be helping people who really needed it.  Within a month I had an interview for a job working in registration at the emergency department of the hospital less than 10 minutes from my house.  I got the job, and I was ecstatic! I loved my job at the hospital for many reasons…it was challenging and fulfilling and I had amazing coworkers.  After almost a year, though, due to staffing issues I was working far many more hours than I had signed on for, at a very unpredictable, crazy schedule…this was too much for M, my daughter with Asperger’s.  During this time she started talking about wanting to die, and the downward spiral of behavior problems and meltdowns started.  I also longed to work in my field, but did not think I had enough education yet.  (I am attending college part time, slowly but surely working toward a Bachelors, then Masters, in Early Childhood Special Education.)

Through a somewhat funny coincidence I discovered that I could in fact work in a childcare and was invitied to apply, interview, and hang out at a daycare my oldest daughter had attended during preK-3rd grade to see if I thought it would be a good fit.  After the first visit I was hooked…I loved the kids already & felt like I knew this is what I was meant to do, what God made me to do.  I am so glad I found this job, it is a dream come true to work part time (I get to drop my girls off-the older 2 go to 2 different schools, Amelia goes to preK where I work-and pick them up every day), work with amazing kids who I love very almost like my own, and potentially make a real difference in their lives.  I am so thankful for my job, every day!

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.

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.

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. 

Self Soothing (Why I’m thankful for stims & obsessions)

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M happily listening to her new headphones (Taylor Swift of course!)

One of the most important milestones to a parent of an infant is when they start sleeping through the night.  Bleary eyed parents compare notes…when does the child sleep?  How long?  Where?  Paci, swaddler, thumb sucking, night feedings?
My oldest slept through the night at 10 months, after I did the 3 night cry-it-out method, which worked fabulously.  My youngest slept through the night some time after she turned 2, when I weaned her.  M, however, was over 4 years old the first time she slept through the night (with the help of a weighted blanket).  Even then it was very sporadic until over 4 1/2…we usually find her sleeping with pillows piled on top of her.

So, what does sleeping through the night have to do with stimming?

A baby is able to sleep through the night after they learn to self-soothe.  Many times this is through the use of a pacifier or thumb sucking, sometimes a swaddler or soft music helps them lull themselves back to sleep.  Eventually they learn to put themselves back to sleep all on their own.

A stim is a repetitive action or behavior that helps a person with Autism calm or soothe themself.  Some types of stimming that are familiar to many people are hand flapping and spinning.  M has a number of different stims that she uses to soothe herself and tune out the outside world when she is overstimulated.
M hisses or repeats words or phrases over & over. Sometimes she spins.  She chews on her hair or her clothes (though we have many different theraputic chewers for her, she usually prefers her hair & clothes).  Sometimes she jumps up & down, sometimes she growls or makes other noises.

Aspergian obsessions are also like stims, in a way.  They are a way for them to retreat into their own neat, controlled world where they feel more comfortable.  M is obsessed with Taylor Swift (until recently it was The Beatles), firefighters/fire trucks, John Deere tractors and patterns.  Right now her biggest obsession is A/B patterns.  Tonight she lulled herself to sleep muttering about A/B patterns.  If she can find a pattern in something it makes sense to her and is less scary.

There are a lot of people who talk about how to get your child to stop stimming, how to bring them out of their obsessions.  I believe most of those people are not actually a part of the Autism community…while there are many views (pretty much all valid), most I know don’t find it important to stop stimming and obsessions. Me, I’m thankful for M’s stims and obsessions.  Without them she would have no way to soothe and calm herself, and I can not imagine how much harder life would be for her, much less how much worse the meltdowns would be, without them.

There are times I know are really hard on M (especially transition times like home to school or school to home), I make sure to have Taylor Swift playing and my Nook tablet ready for her to play Mah Jong (one of her favorite pattern games).  This makes it so much easier on all of us!  I try to encourage her to chew on her chewy bracelet or necklace but if she really wants to chew on her hair I don’t stop her.  If she’s hissing I leave her alone because I know she is really overwhelmed and will stop and come to me when she is ready to face the world again.  If she’s repeating words & spinning in the store I let her…shopping = sensory overload on many levels, I’m just glad she’s able to be there.

So next time you see a child or adult displaying repetitive behaviors like noise making, shirt chewing or hand flapping, understand that they are able to get through their experience because of these behaviors.  They are not weird, stupid or disobedient for having these behaviors, they are coping and bravely trying to make it through an overwhelming world.  While M’s stims aren’t always noticeable and she is still young, I plan to be the parent that never tells their child to stop stimming, or to withhold items of obsession.  She is amazing, wonderful and beautiful the way she is and I am proud of how hard she keeps trying.

One of those days

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The end of a long, hard day

I totally had a better, more organized and educational post ready to write today.  It was all about why I am thankful for M’s stims and obsessions.  But that was at about 7:30am and the day definitely went down hill after that, so I don’t have the concentration to write that post right now.  So what you’re getting is the jumble of a confused mama after a rough day and strange week.

Monday we dropped K off at school to head to 6th grade camp for the week.  I was prepared for this to be a rough week because of that.  M had a very rough drop off Monday because of that.  But once she calmed down she had a good report from school.  At home…
Wow.

It was such an amazing day.  We haven’t had a day that good since at LEAST April.  A couple very short minor outbursts about school but no meltdowns, no name calling or aggression.  It was so peaceful.  Like life without Aspergers.  She and her little sister colored pictures, helped me make dinner and were wonderful for the babysitter after I left for school.  I haven’t felt that light and stress free in a long time.

The rest of the week had been, well, not Monday.  I finally ended up telling that mom at school that M has Aspergers, because I could tell she’d had it with M growling and hissing at her daughter.  She seems much more understanding. 

Then came today.  Again at drop off she was hissing and growling at everyone waiting for the school to open.  Yesterday she chilled out by listening to Taylor Swift (her latest obsession) through her comfy new headphones until the doors opened.  Today she would not do that.  I did get her to walk to the classroom on her own, though.

M initially had problems getting in trouble especially at rest time, until the new aide suggested she be allowed to use her fidgets during that time and we took in her weighted blanket, then she was fine.

Today at pick up she said she had a good day.  Turns out she was getting in trouble again at rest, worse than before.  I also got a long note from the teacher that pretty much boils down to the fact that recess has been a mess for M all year.  She spends most of the time crying and will not play with the other kids.  M does have social and imaginative play delays.  She can parallel play and sometimes play with one other person if she can script.  She can not play or socialize with groups of 2 or more kids.  When I ask M about her day none of this comes up.  And she tells me bizarre things that I know are not true.  I obviously can’t rely on her for information about her day.

And then the day got worse.  She wouldn’t leave daycare later when I finished work, it took half an hour to catch her & carry her kicking and spitting to the car.  She kept getting out of her seat belt and crawling around the car on the way home.  When we got home she hit her sister twice, the cat once, and threw her sister’s oranges on the floor then ate them off the floor. 
But oh no, that’s not the worst.
At all.
She grabbed a pair of scissors when we walked in the door.  I’m not sure what she was going to do with them but I know it wasn’t good.  I chased her to her top bunk bed and wrestled them away from her.  Then spent 15 minutes keeping her from jumping off the top bunk.
And then she had counseling, where among other things she hit & kicked her counselor.
Thankfully the counselor now agrees she needs medication.
Good thing we have an appointment in a week and a half.

We talked about balancing understanding she has special needs and can’t control herself with having expectations, not letting her terrorize us and teaching her to control herself.

I feel like I don’t know what I’m doing.
So I feel like a failure as a parent
And like I’ve failed at special education before I’ve begun.
If I can’t control my own kid, how can I help others?

I’m sure it’s just the bad day talking.  I took away her ability to watch a Taylor Swift DVD tonight.  When she realized she wasn’t getting to get her way no matter what she went in the basement with her blanket and body pillow, curled up in the old glider rocker and fell asleep.  Our sweet kitty curled up on her.  Now she is in bed but keeps babbling in her sleep.  My husband said all he could make out was “Taylor Swift”.

Tomorrow will be better!  Parenting a child on the Autism Spectrum is certainly the hardest thing I’ve ever done.  But I love her and am so proud of her.  And I won’t stop working to help her be happy and able to function successfully in society.

In the mean time, I keep praying for more days like Monday!

The “other” dirty word

image

K on her first day of 6th grade

Shhhhhhh.  Don’t say it.

At least, if you have to say it, don’t use it to actually refer to anyone.

Or, at least not anyone you know.

Certainly don’t say it in public.

You know, the “g” word.

No, not the “G” word, that’s ok, just don’t talk about the “g” word. 

It’s offensive.  You might make someone feel bad.

But, it needs to be talked about, so here goes…

My oldest daughter, K, is gifted.  Actually, I’m going to get really outrageous.  She’s profoundly gifted.

We can talk about special needs all day long, and despite the fact that there is still a lot more ignorance than we would like, most people at least kinda get it, are accepting and agree that students with disabilities deserve an education that meets there needs.

But when you start talking about the other side of special education, that children who are not just smart but truly gifted, who need and deserve a different type of education and programs to meet their needs, you hit a lot of resistance.  People think children who are gifted are already at some sort of advantage.  Or they misunderstand what gifted means and think all that’s needed is an extra assignment, like an honor’s course or something.

And when you tell people that your child is gifted, the response is not usually helpful.  I usually hear things like:
“You’re so lucky”
Or
“Well my kid’s smart too”
Or
“There’s no way she’s actually THAT smart, right?”
Or
“What did you do to make her so smart?”

Even the teachers and administrators at her elementary school didn’t really get it. They tried their best to dissuade me from advancing her a grade (she did 1st semester of 1st grade and 2nd semester in 2nd grade to complete 2 grades in 1 year) but the fact that they told me it was ultimately my choice proved they knew she could handle it. They told me it would mess her up socially and she wouldn’t make new friends, and that of course I didn’t want to rush middle school where she would clearly be a target for all kinds of problems because of her younger age.

For one thing, I knew my kid and they were so wrong, and I couldn’t have lived with myself if I didn’t advance her a grade. She is profoundly gifted academically, but also advanced socially, emotionally, creatively and in leadership skills. She is tall for her age and talks with adults, like an adult. Her friends always were older, anyway.

But having (or being) a gifted child is not easy. And the more gifted you are, the harder it can be. Sure, we’re not worried about her getting accepted into college, or paying for it for that matter (she already has 2 scholarships at age 10). Right now she is in a program for academically talented youth that I have a lot of confidence in and hope for. But it was very painful for all of us to get to this point. So much work at home to keep her learning and interested, trying to educate teachers who insisted she must have ADHD that she was, in fact, simply bored out of her skull. And there is a hyperactivity and a lot of things that do honestly look like ADHD until you study it…these are also symptoms of giftedness. Gifted kids are not easy kids. Smart kids, yes. Gifted kids, no. They are…different.

Then of course the dreaded kindergarten (Michigan has ridiculous laws like it is illegal for kids to enter kindergarten for any reason if they will not be 5 by 12/1 of that year), and pulling teeth to get her advanced a grade. A year after that advancement she was extremely bored again and we though about moving to a large southern city near other family where an appropriate program could be found for her. Fortunately we found the REACH program here, at Battle Creek Public Schools. Even then, last year she struggled with not being challenged in some subjects. She is a perfectionist and has a hard time working in groups. Most people do not think the way she does and she has a hard time explaining her work. It is difficult to find reading material on her level that is appropriate for a 10 year old to read.

It also takes a while for new people, even the gifted teachers, to see and believe what she can do at times. I laughed so hard at her middle school open house. Her principal from 5th grade was there and told me “they’re really going to have to challenge her, even in this program. But I guess they’ll figure that out pretty quick!” 😉

And don’t dismiss being bored. Yeah, it’s boring to review material. But when you’re gifted and being held back, it’s like being bound at the starting line of a race you have been dreaming about running. It is painful. And it’s not right. Maybe someone would have already found the cure for cancer, but instead of having their curiosity nurtured and been asked to perform their best they had to do “age appropriate, grade level work like everyone else, no ‘special’ treatment”, they got bored, dropped out of school and ended up doing nothing but goofing off. Sound extreme? It happens a lot more often than you would think. Gifted education is an important part of special education that needs to be talked about. Dare we dream that one day it become mandated and at least *partially* funded?

Oh, and while I’m using “the word”, I may as well break it all out for you…

I’m gifted too. I pretty much never say it, it’s embarrassing …like you think too highly of yourself. But if you take the false stigma off it, it’s a clinical diagnosis just like autism. And I was diagnosed gifted and given special pull out classes as a kid. So I guess I can say it. I’m no K, but my mind works fast and I get bored easily. I love to learn and I am gifted in language arts and sciences…but I have a lot of difficulty with math.

So, there it is. I have more to say about giftedness and the skewered way Americans view it and treat it, but I need to get to sleep. Maybe next time. 😉

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