Parenting a spectrum of girls

Posts tagged ‘mental-health’

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.

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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.

A different kind of attention

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My beautiful little dancer

Today some other parents noticed M and pointed her out.  She stood out as different from her peers.  Nothing new, right?  This was not, however, the kind of attention you may be thinking of.  This was one of those moments when M stood out and was recognized for what she does well, for one of the areas her Asperger’s actually helps her excel.

M had dance class today.  This is her second year in dance and she had really been looking forward to this year because she could finally do tap.  Now it is a struggle to get her to dance each week and honestly, half the time I don’t make her go.  But recital is in a couple of months, she already committed to the year & we already put a hefty deposit on her recital costume so we told her she has to finish out the year.

The thing about M and dance is, she is really good.  She used to be amazing at tumbling/acro, but the medication she is on & the weight she has gained from it seem to have made her a little less coordinated in that area.  She is, however, still wonderful at remembering the routines.  Part of who she is with her Asperger’s is that she has a great memory (scripting from movies, anyone?). And also that she is very much a rule & routine follower.  Initially I didn’t think she would like dance and was hesitant to let her try, but she ended up loving the predictable routine of the steps and motions.  She has always been the only one of her young group to know the entire dances well and look like a great dancer and not just cute on stage.

Today the little 5 & 6 year old girls ran through their recital dance for us parents.  I could hear behind me two moms talking about “that girl in purple” and how she was really good and the only one who knew the routine.  When the girls were in the dressing room later one of those moms made a point to tell M how good she was and ask if she practices at home (she doesn’t, I explained she just has a great memory). 

I think it was good for M, and me too, to have someone notice only something that makes her special and unique in a great way…the mom even said she was glad her daughter was next to M so she could watch M for the right steps!  Of course there are so many wonderful things about M, many more than there are struggles.  But this week was particularly rough and I had seen so many of the struggles this week, and was concerned that during dance class she couldn’t interact with her peers without roughhousing with them…it was good to be reminded.

I will certainly continue to let her try whatever activity she wants and know that she will give it her best and her wonderful self will shine through.

The Eyes Have It

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M wearing my glasses

A little over a year ago M started complaining that it was kind of hard to see things sometimes.  She had just had her preK eye screening at school but I knew that is a very basic screening and decided to take her to an optometrist to make sure.  This was also right before her appointment with the Neuropsychologist for the Autism diagnosis and I wanted to make sure everything else checked out before going through 2 days of in depth testing.

Fortunately, with referrals from friends, I found a wonderful developmental optometrist in town who works with children and special needs children and also does vision therapy, in our town!  After a full examination he determined that her vision was normal but her ocular motor development was delayed.  He explained that this was normal with fine motor delay (her fine motor is/was in the 2nd percentile, and ocular motor develops after fine motor).  We decided to wait a year, until after she had a semester in Kindergarten, to give her motor skills time to develop and check again.

This winter a month or so before her eye appointment she started to complain her eyes were hurting, and her eyes were often red and watery.  Another full exam revealed that her eyes had become worse with serious problems in tracking and focusing.  She has what is called Convergence Insufficiency, which is like “lazy eye” but it only occurs when she needs to track or focus, like when trying to read, write or draw, or even sometimes watch TV or play games.  She often sees double and her eyes tire very easily.  When she tries to focus close up, her eyes shake and her left eye moves outward in the opposite direction or rolls around, unable to focus and work together with her right eye.  The doctor suggested waiting 6 months to see if the problem corrects itself but warned me it could also get worse quickly.

After the appointment her eyes were so worn out she just cried all evening, had a bad headache and went to bed early.  Since then she complained every day increasingly of eye pain and difficulty concentrating.  Then she began to complain of headaches and things looking blurry.  Most recently she has also complained of double vision (I think she finally has words & understanding to describe what she is seeing).  I wear glasses that have prisms (which is what she will need to help her eyes strengthen and work together) and after trying them once when reading she begs to wear them all the time to make her eyes stop hurting or to do close work.  She also tried on Russell’s glasses and said they don’t help at all…and they don’t have the prisms, which shows me that it really is helping her.

Although it has only been just over 2 months I called and moved her appointment up to later this month.  I don’t think we can make her wait any longer for glasses and vision therapy.  I also believe a lot of what we thought was fine motor delay (difficulty writing and drawing, using her hands to eat instead of utensils) could actually be due to her vision problems.  Also some issues we thought here anxiety such as constant stomach aches could be due to her eyes, as the double vision could cause her dizziness and nausea.  I hope the doctor will agree to give her at least glasses now to provide her relief for her eyes, because I hate seeing her in pain all the time and I really think this problem is holding her back from meeting her potential.  Being able to see properly could even get rid of the aggression she still sometimes displays.

Please pray for a good result and help for Margaret in the coming weeks as we try to get her what she needs to see and feel better.

Refresh

This is not the post I planned to write tonight, but it is late, I am tired, and this needs to be written about anyway.

Today I enjoyed my girls (plus K’s best friend, but she counts as one of my girls).  I woke early (the little ones don’t know how to sleep in) and made a time consuming but delicious breakfast.  M had a rough morning & didn’t want to leave the house and A barely slept the night before but after lunch & a nap they were finally ready to head to the park/playground for a play date.  We enjoyed the outdoors, then I surprised them with ice cream.  At home they played in the sandbox and we all went for a walk.

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M & A at the playground today

Then, although I love my children dearly and although M (with her newly rediscovered separation anxiety) begged me to stay with her forever & ever, I did something I needed to do but rarely make time for.

I went out with my girlfriends.

Those of you in the special needs community, and probably most moms (since we tend to put ourselves last) have heard the Oxygen Mask Theory.  In an airplane when going over safety procedures they remind you to put your own oxygen mask on before you help other people with theirs, even your children.  This is because if you don’t get your mask on and you pass out, you can’t help anyone else at all.  I don’t know if I could put my own oxygen mask on first, but that’s kind of beside the point (or is it?). So the theory is that as moms and especially special needs moms, we need to put on the metaphorical oxygen mask and give ourselves what we need to rest, recharge & refresh or we really aren’t going to be any good for our families.  Without those moments we run & run until we are empty & have nothing left to give.

Tonight I took that time to refresh, rest & recharge.  I went out for dinner with my two best friends on the planet, who also have children with special needs.  We enjoyed some amazing food & drink (that our children would probably never touch anyway) but best of all some wonderful grownup conversation without interruptions or little ears.  It was just what I needed.  Take the time to do whatever it is that refreshes you, as often as you need to.  Thank you ladies for being my refreshment, my oxygen mask.  You are so appreciated!

Blue & Stuff

Yes, I have been silent (on my blog) for quite a while.  Not that I haven’t had anything to say, but work, school, parenting, and all of those other grown up responsibilities have had me exhausted and I haven’t been making it a priority.

Today is April 1st, however, and the start to Autism Awareness month.  This month my goal is to write a blog post (however brief) every day and hope to reach new readers to share awareness and support. 

What better day to start Autism Awareness month?  Here it is not only the day after Easter, but also spring break.  So yeah, even though we’re ALWAYS aware of Autism at my house, on these kinds of days we are extra aware.  I am one of those parents who have always loved winter, spring & summer break.  Yes, I still have to work but it does still enable me to spend more time with my kids, and I’ll take all the minutes I can get.  For M, however, any break is a change in routine, and more reason to be anxious and confused and upset.  Bring on the meltdowns & the stimming!  Add the fact that A has not been feeling great and has been really fatigued and it is a recipe for chaos.

M stims, A yells and hollers at M for her “annoying” behavior.  M becomes over stimulated (since she can’t effectively shut out A when she is screaming at her) and starts yelling that she is going to kill us (which we have been working very hard to change to a different phrase/threat  so she doesn’t say it at school & get suspended) and becomes physically aggressive with A and/or me.  A cries as if she wasn’t warned it was coming and then attacks M back.  It’s a fun cycle.  The girls have to go to work with me this week (I work at a daycare, makes that easy) but M’s anxiety and social problems make that difficult for her, since she is usually in school when I am at work.  This girl who complains every morning that she doesn’t want to go to school…is asking to go to school.

M has been working hard.  The medication & supplements she is on are helping along with maturity she hasn’t had in the past (much of which I attribute to her psychologist, teacher & para pro).  Saturday we were all going to go to a local egg hunt, and M decided she did not want to go because she couldn’t handle all of the people, noise and excitement.  Today we told her about an event coming up where one of her favorite book characters (Pete the Cat) will be coming to the library and she calmly said she does not want to go because she is afraid of people dressed up in costumes & she is afraid there will be too many people there.  The fact that she can process this information & communicate it is huge!  This is the biggest way the Risperdone has helped her, it slows her down just enough so she can think, and she is much much more verbal.  This alone prevents a huge amount of meltdowns.

So look forward to my posts this week (or hopefully you at least don’t dread them) and make an effort to get to know someone (child or adult) with autism.  They are pretty awesome, and as varied (and beautiful) as snowflakes.

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Hamming it up on Easter 2013

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