Parenting a spectrum of girls

Posts tagged ‘Asperger’s’

Sick day

My poor M.  Today she is sick.  She woke up at 3am sick to her stomach and was up much of the night.  Finally this afternoon she was able to keep down Pedialyte and saltine crackers.  M rarely gets sick, I think it has been close to a year since she has had more than a slight stomach and headache.  Surprisingly she did ok with being sick, at least the actual physical part of not feeling well.

It might not have been more than an annoyance and inconvenience for her, except it was about the very worst day she could have been sick.  Today M was supposed to have a play date with her best friend.  And to make it worse, last night she had just bought them both Best Friend necklaces (adorable “mood” horse necklaces).  She was so looking forward to spending time with her bud, whom she only sees on these special play dates.  We try to have them once a month or so but we are all so busy it doesn’t always work out.  My poor girl, as soon as she got me up and we were sitting in the bathroom, she started sobbing saying “I want to see [my best friend]!”

Of course, being a concrete thinker, everything has to have a reason.  No matter how many times I explained to her that it was just bad luck, and that she just got some germs somewhere that made her sick, she kept trying to figure out exactly WHO made her sick.  And when she couldn’t figure it out she decided to blame God.  “Why doesn’t God want me to see my best friend?  Why did he make me be sick?  God hates me!”  When I told her mom, her best friend was also very sad that they could not see each other today, and both girls were sobbing.  I felt awful.  She also kept begging me to let her go anyway.  She kept asking why she could not go, and I kept explaining that she was contagious and did not want to get her best friend sick.  Of course she did not see that logic, because since she was already sick she didn’t see why it mattered if her friend was sick, too.  Fortunately by the afternoon M was still sad but not so totally obsessed and upset about not seeing her friend.  I think she realized that she was still not feeling well and that it really was not an option today.

Not feeling well and the inability to do anything other than lay on the couch watching movies and playing board games was tough on M, who requires a lot of movement to keep herself calm.  She did really well, though, all things considered.  I am glad that sickness does not come often for my sweet M, and that when it does she is able to handle it better than I would expect.  Now we pray no one else in the household gets sick!

Love like only a sister

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M trying to be like her big sister

My goal of writing every day this month was for Autism Awareness (& Acceptance) Month, which is why I have been concentrating almost exclusively on M.  But today, in searching for what topic to write on, I realized that K really deserves the spotlight for a minute.

For one thing, K is amazing in her own right, and also has her own special needs from her high level of giftedness.  She has had an amazing year.  All As and A+s this year, after grade accelerating, being placed into a gifted program, and now accepted into the highest gifted program available nearby due to her SAT scores (she just turned 11). She was accepted as a returning scholar in a scholarship program for academic achievement and humanitarian work, for the 3rd year in a row.  She is part of a small leadership group at her school.  She has continued to work hard and miss little school despite struggling with chronic mono.  Her love of learning in all subjects is amazing.  Today she was excited to share a wealth of information on a number of topics, from her current vulture observations to the properties of Mars to Hieroglyphics to drawing optical illusions and pottery.

But none of this is really what I wanted to share.  Having M as a sister has at times been quite difficult for K.  First of all, she was almost 6 when M was born and didn’t particularly want to lose her status as only child.  Then M required much more than her share of attention over the years.  Also, K just does not understand M, their minds work so very differently.  She has tried off and on to understand, occasionally being a big help with M, doing things with her and teaching her things.

This week, K came home with a new book from the school library.  It was a sort of reference/self help kind of book for kids with autistic siblings.  She wanted to read it.  She WANTED to UNDERSTAND.  She started asking a lot of questions.  What an amazing young woman, to voluntarily seek out a way to understand her sister, and to help herself cope as a sibling, as well.

This has been an extremely bad week for M.  She is starting to show behaviors we have not seen since the beginning of the fall.  Today she even got in trouble at school for screaming at the para pro, whom she adores, and she rarely has problems at school that get a note sent home.  K has stepped in to help her sister when I have been trying to make dinner or complete my own homework.  She has spoken calmly to her and made proprioceptive activities and exercises for M to do to help calm her.  She has not once lost her temper with M this week, in a week where M has constantly been losing her temper with everyone else.  I know she wants to be an oceanographer and geophysicist, but I think she would also make an excellent occupational therapist ;).

I couldn’t be more proud of my girl than when she is helping another person.  And as a kid, siblings can be the hardest people to forgive and help.  I have some pretty amazing kids. 🙂

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.

C.I. – Moving Forward

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M in the frames she chose today

As many of you know, in February M was diagnosed with C.I., also known as convergence Insufficiency.  A year before a trip toma developmental optometrist to check out her claims of having a hard time seeing sometimes showed delayed ocular motor development.  Because she also had delayed fine motor skills and was only in preschool, the doctor wanted to follow up with her in a year to see if she had improved.  (Gross motor develops first, then fine motor, then ocular motor.)

This winter, testing showed that  M had significant trouble focusing her eyes.  They would not track properly or work together…when required to focus on an object up close her eyes would start to shake, then her left eye would turn away in the other direction or up into her eyelid.  Her eyes had to work very hard to not see double, and she was sometimes seeing double anyway.  The doctor wanted to wait 6 months to see if she outgrew this convergence insufficiency, but warned she could get worse quickly and to come back if she had a hard time with school work, complained of headaches or double vision, etc.

M cried all that evening from eye fatigue and went to bed early.  She seemed to steadily decline from there, complaining throughout the day at school (especially ‘close work’ times) of eye pain, then headaches, then blurred vision and occasional double vision.  At home she refused to do any writing/drawing homework, but I was unsure if that was due to her fine motor or vision problems. 

Today I explained all of this to the optometrist and he did some more specific, in-depth testing to check her tracking/focusing abilities.  It was even worse than we thought.  Her ability to use her eyes together to focus and track is significantly impaired, to the point that even the doctor was surprised that she is doing as well as she is.  At this point, to take the strain off of her eyes, we are going to use glasses with low level, light lenses.  She will go back in a month to see if that is enough, or if she needs additional help such as higher level lenses and/or vision therapy.  She may outgrow this impairment in a year or two, or she may not.  Right now the concern is to help her be able to focus and see comfortably enough to learn in school and do her work, and to preserve her vision (in extreme cases of C.I. you may lose vision in one eye as it shuts down to keep from having double vision).

I am so glad we are on the road to helping M with her vision.  I am also thankful that she is not concerned about wearing glasses.  I assured her no one will make fun of her (most kids actually think glasses are cool) and she has been using mine to help her read, so she knows how much better she will feel.  I am also glad I made the unconventional choice to take her to the developmental optometrist (last year she had just had her preK vision screening and it turned out fine).  I am hopeful…who knows what all symptoms are caused by the pain, fatigue and frustration of trying to see properly, and might be improved with glasses?  I can’t wait until she gets them next week and can start having relief!

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.

Diagnosis what?!?

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

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

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

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

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

Where did it go?

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Me & my girls goofing off, pretending to be zombies (K is obsessed with zombies)

I know everyone says this but…seriously, where did the time go?  And why won’t they stop growing up so fast?

I am posting late (and short) tonight because I am preparing for a mom to mom sale.  Finally getting rid of some of the baby clothes (we have SO MUCH to get rid of), but it is a LOT of work if you want to do it right.  Going through all of these clothes is hard, though.  Before I could hardly get rid of anything but now that its been a while since any of them have worn these clothes its a little easier to get rid of most of them.  Still, I remember when they were so tiny.  I wouldn’t miss their current stages (11, 5 and 3) for anything, but I also miss those baby years.  Also until A was 2 I worked full time…like, 9 hours a day plus commute time, 4 days a week (5 days before A was born) and I missed too much.  Financially I needed to work, but I finally couldn’t take my high stress corporate job anymore and moved to more gratifying, meaningful and part time work.  But I mourn for all of those years, all of the things I missed.  I always wanted to be a stay at home mom but caring for your children’s basic needs is most important.

Hind sight is also 20/20.  There were things I noticed different about M at the time like not laughing, babbling or crawling, very repetitive and rigid in routine…but other things I can see now looking back that I couldn’t see then.  The biggest one is the shutting down.  When she was 4 she started to completely shut down, would not move, blink or speak for periods of time when overwhelmed.  It was so scary!  Other times were not as bad but she wouldn’t hear us talking to her or move away from what she was doing and had a vacant expression.  She still does these things and then (or when she is stimming or displaying a lot of scripting or echolallia I know she is in “autism world” and not here with us.  Now when I look back at pictures I see so many from all ages where she has a vacant stare, and I know she was in the autism world then, too.  It makes me sad to realize she wasn’t even present for the moment and I didn’t realize it.  I was totally missing or misreading her cues.

But now I know, and we move on.  I couldn’t always be there then but now I have a flexible part time job working in early childhood where my girls can come to work with me.  And although we won’t get those baby and toddler years back I try hard to appreciate all of the moments and milestones now, because I know when I go through clothes again next year, I want to have fewer regrets.

Compassion

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M with her Daddy & A

“They” say people with autism lack empathy and compassion.  I’m not sure who “they” are but I think they are kind of like the people who pass those ridiculous education laws…they like to talk about something they know nothing about.

Does M have a hard time understanding the viewpoint of others?  Definitely.  When she is overwhelmed is she 100% concentrated on her senses & set on whatever will make her feel better, without regard to other people whatsoever?  Yes.  Does she lack empathy and compassion?  Absolutely not.

I have mentioned before that sat the charter school M attends they have a monthly “moral focus” (and I have to brag that in November M won the award for her class for the moral focus of gratitude 🙂 ).  This month’s moral focus is compassion.  To kick of the month & the new focus, an assembly was held (she hates assemblies by the way…thank God for her noise reducing headphones) where they introduced a boy who has MD.  The school is raising a lot of money to help the family adapt their home now that he is in a wheelchair, and asking the students to collect coins (or bills) for this project. 

M immediately at pick up told me about this boy & what he and his mother go through and what they need, in detail.  She proceeded to tell me she feels badly for both of them and wants to give all of her money (around $10) for this boy and his mom.  She said she was a little sad that she couldn’t buy anything now (she loves the independent feeling of using her own money to buy gum, for example), but decided they need it much more than she does.  We got home and she immediately took her $7 from a family egg hunt and put it in an envelope to donate.  As soon as she finds her wallet, you can be assured she will take in every bill and coin she has, and ask everyone else to donate, too.

This is not unusual for M.  When she is doing well she often will give up just about anything to her little sister if she asks.  She makes pictures for people all the time.  She is truly a compassionate, giving little girl.

As a side note, we talked about how we shouldn’t really feel bad for someone for being in a wheelchair, because there is nothing wrong with needing a wheelchair, but of course we feel bad for the circumstances they face due to their home not being adapted.  (Just like I don’t want someone feeling bad for her because she has Asperger’s, but they might feel badly that she is having trouble coping in a crowd due to overstimulation, for example.)

So “they” are wrong.  Don’t ever let anyone tell you who your child is or what they can or can not accomplish.  Because this Aspie has a LOT of empathy and compassion!

Sleep (yeah right)

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My sweet A, fast asleep at nap

Sleep…oh how I miss sleep.  It is one of my favorite past times, a long lost friend whom I long to catch up with.  I haven’t slept through the night in over 6 years.

First, my pregnancy with M was full of 9 months of all-day sickness and frequent infections, along with a terrible chronic case of tonsillitis that my doctors couldn’t manage to properly diagnose until 9 months after it started when my jaw locked shut from the swelling.  No sleeping with all that pain.  Then M was born screaming…and never seemed to stop.  The night after she was born, after crying pretty much non stop all day, I had finally gotten her to sleep in my arms.  Daddy came to visit & insisted on holding his precious girl…which immediately started another hours along screaming marathon.  She actually hated being in the car as an infant and would not fall asleep.  Nor would she sleep in the swing, bouncer, carrier, cradle or of course her crib.  She wouldn’t even co-sleep.  She would only sleep while nursing (pacifying) while I held her sitting up in the glider rocker.  As she got older she would fall asleep after a lot of fuss, but woke often (not sleeping through the night even once until after she turned 5) and was ready for the day by 5am at the latest. 

When M was 2, A was born.  She slept OK (none of my kids were great sleepers as infants but much better than M) but did not fall asleep on her own or very easily, and woke through the night to eat.  I nursed her past age 2, so a lot of the night waking was due to my own decisions.  She did finally sleep through the night some after she weaned, but she still does not sleep through the night regularly.  And both little girls are usually up by 6am, 6:30 at the latest no matter what day it is, asking for breakfast.

Then there is my chronic insomnia, likely caused by so many years of listening for and waking up with babies and my body can’t figure out how to sleep through the night.  I sleep lightly and wake every hour or 2 for no reason.  When my anxiety is high I can’t fall asleep at all.  And my husband, love him, snores, even after surgery to correct a deviated septum.

Tonight I had hoped to get to bed early, even though I had some homework & other things to take care of.  By 10pm was my goal.  Well, it’s now 10:30 and I’m just writing my blog post.  A had a night terror.  If you have never experienced one, they are awful.  K had them for years, past the age where they are normal, but fortunately they stopped a few years ago.  A generally only has them when her asthma is acting up.  They scream and cry and flail around, in some terrible nightmare.  They even open their eyes and look at you (though they can’t see you) and cry for Mommy, unable to be soothed by your touch & voice because they don’t know you’re there.  It is impossible to wake them and you just have to sit and watch helplessly until it subsides and be there when they wake up just enough, then fall back to sleep.

I don’t know why M is the only one to have never had a night terror, but I am glad…she deals with enough anxiety already.  It is a lot like a bad meltdown, in their sleep.  A talks in her sleep, too.  A weighted blanket is what helped M start sleeping through the night but after a week she wouldn’t use it at bedtime anymore.  Now she uses it during the day or for bed for proprioceptive input when she needs to relax. We tried everything, classical music, white noise, aromatherapy, black out curtains, super soft sheets…nothing worked until she was just able to regulate herself better with maturity and LOTS of Occupational Therapy.  Also, The Beatles helped.  Her first obsession was the Beatles, their music really calms her.  Now if only I could sleep…

Here’s wishing you a long, restful night of sleep!

Open page brag day!

This is a video of M reading this evening…still so amazing to me, a miracle! Since it’s been another tough day for her (Spring break ends for her Tuesday, so next week she should be back in routine & feeling better) I want to concentrate on the good things. And I believe all of our kids (or other loved ones, or ourselves) have accomplished something positive this week if we stop & think about it. So please comment & share your brag with us today, we’d love to hear about it. 🙂

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