Parenting a spectrum of girls

Posts tagged ‘children’

Pet Therapy

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A & me with Vienna

I am a cat person.  For a long time I pestered my husband to get a cat, but he claimed allergies and a general dislike for the animals, so we never got one.  I am not much of a dog person and with both of us working a dog was not a great choice for our family (especially since hubby insists we can only have a BIG dog, and we have small children who were terrified of dogs anyway.)

Actually, M was terrified of all animals, and A was petrified of dogs.  I really felt that getting a cat would be good for the girls, especially M.  I also wanted one for my own selfish reasons…not only had I grown up with cats, but I suffer from time to time from Anxiety disorder and anxiety attacks, and felt a pet would really help soothe me.  Eventually, he agreed to let us get a cat.

January 2012 (K’s 10th birthday actually) I took the girls to visit a local no-kill shelter where a friend volunteered.  At first M was terrified.  There were many cats wandering about and they are quiet, so she thought they were sneaking up on her (planning to do what I am not sure).  She screamed and hid behind me a lot.  Finally one of the volunteers coaxed the girls over to pet Vienna, a beautiful, calm, friendly girl.  I had let them know ahead of time I wanted an adult female who would tolerate our loud & chaotic home.  After a while of some gentle talking and petting, the girls agreed we should take Vienna home with us.

She couldn’t have been a better fit for our family.  Everyone got used to each other quickly, and she calmly let the girls carry her around, push her in the doll stroller, whatever they wanted.  She also has an amazing sense of when someone is sick or sad, and she cuddles with that person.  I have seen her many times go to M when she is upset and having a meltdown and just lay on her and purr.  Even better, after adding Vienna to our family the girls were no longer afraid of any animals!  A now adores dogs and goes up and pets them at every opportunity, and M loves hanging out with my mom’s dogs and helping take care of them.  Vienna even won over my husband.  In fact, she prefers him & M as her people.

July 2012, after much pleading, my husband let us add a second cat, Honey, to our family.  She was a cat born to a feral in a friend’s neighborhood and seemed to want a home.  She was not a good fit for my friend’s home and she was looking for someone to give the young cat a chance.  At first Honey was very timid and stayed in one room of the house, but after 3-4 months she started to warm to us and became part of the family as well.  She has made herself my cat, but the girls adore her as well as she is very sweet and gentle.  I think of her as my baby.

I began to volunteer with the shelter where we got Vienna, doing adoption booths at local stores.  I love it, though right now I don’t do it too often since we have been busy and the girls need my time.  Finally, this January, I found out that a cat I had fallen in love with named Recycle (because he had been found in a dumpster, sent to be euthanized then saved by a woman from the shelter we got Vienna at) was available for adoption, and we took him home as well.  He has made himself K’s cat and prefers her over everyone else. 

3 might seem like a lot of cats; growing up I had 3 cats and it feels like a completion to our family.  They have all been wonderful for our girls, and calming for M.  The girls each have jobs: K cleans the litter boxes, M gives them water and A feeds them.  I think it is also great for them that they all have jobs that not only help around the house but are caring for other living beings that depend on them.  Some people have therapy dogs, we have therapy cats.  Some might say we rescued our cats, but I think they rescued us. 

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Honey & Recycle

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.

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

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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.

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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.

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