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Never-ending Battle

We have been fighting a never-ending battle with Kaitlyn for as long as I can remember.  It takes place in the mornings before school, on the weekends when we want to go somewhere, and in the evenings after Kaitlyn’s bath.  It is the battle to brush Kaitlyn’s hair to make it look at least somewhat presentable.

99% of the time, Amber is the one that faces the daunting task of brushing Kaitlyn’s hair.  The times I have been the responsible party, there have been more failures than there have been successes (most notably my failed attempt to pull Kaitlyn’s hair into a ponytail before gymnastics).

If Kaitlyn had her way, she would never brush her hair, or would do so maybe a few times per week.  For one, she claims that it is a painful experience, but I have only noticed any type of pain-inducing brushing on those occasion where Kaitlyn’s hair looks like a bird nest.

Lucy HaleWithout fail, Amber will patiently brush Kaitlyn’s hair in the morning before school, sometimes even taking time to braid her hair.  By the time Amber is done, Kaitlyn could be ready for school with her hair looking like the picture at left.

At most, the time between when Amber finishes Kaitlyn’s hair and has it looking great and the time Kaitlyn gets out of my car to head into school is right at an hour.  Probably less.  And without fail, by the time she is heading into school, and more often than not before we even leave the house, Kaitlyn’s hair looks nowhere close to how Amber left it.  In fact, I think if Kaitlyn had her way, she would let her hair resemble the hairstyle pictured at right.albert-einstein

On the one hand, I am proud that Kaitlyn couldn’t care less what people think of what her hair looks like; it speaks to who she is as a person that she puts little stock into outward appearances (she would also be happy if we let her wear her clothes however she sees fit, which usually means at least one piece of clothing is on backward or inside out).  On the other hand, it is frustrating because I know that Amber does a great job in making Kaitlyn look presentable each morning, and it almost always goes out the door before school even starts.

I guess if this is the worst of our problems, we are in pretty good shape.

 

 

 

Annual Report

A few weeks ago, we took Kaitlyn for the second part of her annual evaluation with the psychologist.  This was the one-on-one session where he basically interviews her and gets a good idea of how she has progressed or changed since our last visit.  Overall, the visit was about 90 minutes long.

Last week, we received the clinical report (and when I say “clinical,” I mean it very literally.  As usual, the report was filled with “doctor speak,” which we have had translated for us in the past, so we are familiar with it now.).

There were no real surprises in the report at all, and it read pretty much like last year’s did.  Really, the only “change” that was noted was that, according to the DSM-5, Kaitlyn now technically has Level 1 Autism Spectrum Disorder.  After researching what exactly that means (she will “require support”), I concluded that it is just a fancy way of saying she has Asperger’s (because it will be so much easier to tell people, “my daughter has Level 1 Autism Spectrum Disorder” than it was to say, “she has Asperger’s.”  Now, in addition to explaining what her diagnosis means, Amber and I will first have to overcome the blank looks from people trying to comprehend what we meant by “Level 1.”).  Here is what Level 1 is:

Social Communication:  Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to- and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.

Restricted, repetitive behaviors:Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

Basically, Level 1 Autism Spectrum Disorder mirrors Asperger’s.

The report did mention that Kaityln probably also has Obsessive Compulsive Disorder (OCD), which made Amber immediately point out (rightfully) that she inherited that from me.

Self-Described

I tend to think that I do a good job in letting everyone get a peek in on our lives, and what it is like raising a daughter with Asperger’s, but every so often I come up blank on what to write about.  Usually right around the time that happens, Kaitlyn will give me, although unknowingly, something to share.

Like the acrostic poem she brought home from school Friday:

Kind
Adorable
Incredible
Tomboy
Likes video games
Young-looking
Never mean

I like when these entries write themselves!

Exceeding Expectations

Even before we dropped Kaitlyn off with Amber’s mom last Sunday, we had talked about keeping our expectations for this week realistic.  While we wanted Kaitlyn to spend the whole week away from home, we fully expected that they would be back at our house by Wednesday.  After all, this was the first time that Kaitlyn had really spent any significant time away from us.

It is safe to say that Kaitlyn exceeded our expectations once again.

Calendar CircledIn a few hours, Kaitlyn’s Spring Break, at least the vacation part of it, will be over.  She will be home this afternoon, having made it the entire week!  Now, that is not to say that she did not have a few moments where she was teetering on the brink of wanting to come home, but she stuck it out.  Amber and I are both proud of her, and proud of the foundation that was laid for future times away from us.  For someone who is all about her routine, Kaitlyn did a great job of being in an unfamiliar place, following an unfamiliar routine; the break did her a lot of good.

I’m not sure who missed who more, whether Amber and I missed her more, or she missed us more, but it is safe to say that we all enjoyed the week.  At the very least, we talked to Kaitlyn every night to get a recap of her day, and she seemed excited to tell us about her day.  She went bowling, had a picnic, went to a high school baseball game, and did some shopping.  She stayed up late and slept in, and even made a new friend in Amber’s mom’s dog.

While it would be great to think that each time she spends an extended time without us will be this successful, that would be unfair.  We know that each time will be its own unique experience, and there may be times where she is miserable and will want to come home within a day; if and when that happens, we will continue to build on it and help Kaitlyn grow.

A Spring Bloom

FlowersToday is the first day of spring, so I thought I would share something that Kaitlyn wrote recently.  When we took her down to drop her off with Amber’s mom for Spring Break, we stayed with Amber’s granny for the weekend; granny has a nice piano in her house that is not used nearly as much as it was in the past, but Kaitlyn always seems to enjoy playing it.  She played for a little Saturday, then decided that she needed a pencil and some paper; she sat and wrote something, away from our prying eyes, and then headed back to the piano.

We heard her playing, and could barely hear that she was singing, too, but we could not hear what she was singing.  When she went to bed for the night, she left the piece of paper she had written on by the piano, so we picked it up.  Below is the song she wrote and was singing.  She titled it Bloom:

“Before you know it, spring is here and you think it’s pretty.
Flowers bloom, bloom, bloom!
Bloom, bloom, bloom!
Springtime’s here, so it’s warm.
Outside you find bees buzzing,
butterflies flying, birds singing!”

I think it is an amazing song.

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