C.I. – Moving Forward

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.

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.

Struggling not to Compare

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

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

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

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

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

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

Play

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.  🙂

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.

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?

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

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)

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!

The siblings

All 3 of my girls on a family fun day

 

I talk a lot about M and her special needs (Asperger’s Syndrome, OCD, GAD, Dyspraxia, Sensory Processing Disorder, Convergence Insufficiency) but I talk less about my other daughters, her siblings.  I do occasionally post about K, age 11, who is profoundly gifted.  Less so about A, age 3, who has asthma and is likely highly gifted.  But what I really need to post about, and I don’t think we talk enough about, is how M’s special need affect her sisters.

K is significantly older than her sisters, and generally tries to avoid them by camping out in her room in typical pre-teen fashion.  She really is a good sister and does play with them sometimes, but overall they have no interests in common which is exacerbated by her high intelligence and creativity.  Just like M, her mind works differently.  Just a different kind of different.  She struggles to understand M and to be sympathetic, but it is difficult for her to even understand her neurotypical peers so it is truly a struggle.  We talk often about it and really sometimes she is the one to calm M down and give her exactly what she needs.  M loves her big sister passionately and misses her greatly when she spends time with her best friend, which is pretty much every weekend.  I was extremely touched a couple of weeks ago when K left her devotional out marked to an older page we had missed for one reason or another.  She told me this particular devotion was special to her and she wanted me to read it.  When I got to it that evening I realized it was about how God made everyone unique and special and told the story about the boy on the autism spectrum who was put into the end of the last basketball game of the season and scored several baskets.  She literally brought tears to my eyes (which doesn’t happen often, I truly hate to cry).

A loves her sister M so much.  They are 26 months apart but more like twins.  They used to never fight and play together and enjoy each other’s company constantly.  They are still best buds, but since A turned 3 and started preschool there is a little more discord in their relationship.  I think a lot of this is because A is learning to stand up for herself and realizing that M’s behavior is not always appropriate.  M also becomes upset with her more often because she is reaching M in some areas of development (exceeding social-emotionally) and because A is starting to express her own preferences versus always going along with what M wants.  Unfortunately A is often the person M takes her frustration out on, both physically and verbally.  This summer before M started on medication for her dangerous behaviors (physical aggression, talking about killing herself constantly, becoming hysterical and trying to run away or run into traffic etc) I was truly worried for A’s safety, but fortunately that is over.  M does still push, pinch, bite, hit and otherwise try to hurt though…usually A, sometimes K or myself.  We have zero tolerance for this behavior and while it is less frequent (usually high stress transition times…like spring break…) it does still happen.  She also has certain phrases that are due to the unfortunate combination of Asperger’s and OCD, which also makes them a very hard compulsion to break.  These include “stupid idiot” and “I want to kill you”, and are often screamed at anyone in her path (at home, but fortunately not at school yet), often A.  As you can imagine her self esteem suffers a little at times and her feelings get hurt by this language from someone she so truly loves.  She is the most easy-going, laid-back kid, but sometimes, especially when she is not feeling well, it is just too much and she needs extra cuddles and reassurance.  She also picks up on M’s undesirable behaviors and tries to mimic them sometimes.  Then we have to explain why, even though M is older, she can not always control what comes out of her mouth but A can.  Still, overall, they are good for each other.  A is a very loving, compassionate child who loves to play mommy, teacher and doctor and I can see her experience with M and their closeness making her wonderful at any of these endeavors.

I wish there was a support group for siblings that K could join, and maybe A later if she wanted to.  In the meantime I know I spend a lot of extra time and energy on M and she seems to get away with a lot more.  A manages to get a lot of time too, being the youngest and knowing how to use that pouty lip and big sad eyes against me as she does 😉  But I need to be conscious that as hard as tough weeks (like spring break LOL) can be for M and for me, they are also difficult for my other girls, who have no control over the meltdowns they are often in the middle of.  I need to make an effort to spend a little extra time with them and be extra understanding of them as well, as they probably also suffer from sensory overload after, say, riding home in the car with their sister screaming, kicking the door and threatening to beat them up.  ❤

M & A, best friends & sisters.

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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