Life with MS & EDS

October 25, 2010

Little Sister Update

Little Sister had her six year old check-up.  Going to the doctor with her is always an interesting experience.  I somehow always end up feeling like a bad parent.  It’s weird to nonchalantly respond to, “So, how does she sleep at night?” with responses like, “Great, as long as it is broad daylight in her room.  She can’t deal with shadows, so we can’t dim the lights.”  I’ve lost count of the number of crazy things I’ve said in response to seemingly general questions.  It usually makes me laugh (although I try not to do so out loud in front of the doctors.)  The response to “how is she eating” was not quite as interesting.  I said that most of her calories seemed to be from juice, but we’re working on water.  I think I saw the doctor’s eyebrows rise at that one.  Little Sister chimed in with saying she’ll take a giant sip of water at recess.  I guess that’s progress.  I said that we were still at about 5 foods (mac and cheese, pasta with sauce, chicken nuggets, a variety of fruit, baked or mashed potatoes (that’s a very new addition), and cheese.)  I guess I should have added in jelly sandwiches, cereal, and the occasional waffle, in addition to snack foods.  She asked if we were using nutritional supplement and I said we were doing vitamins.  It seems like we need to consider doing nutritional supplements, like Boost shakes or something like that.  Her BMI about 14, which is at the 15th percentile.   I guess that’s not terribly low.  “Under weight” doesn’t start until 5% or less, according to the CDC.

The one thing that the doctor was not happy about was that physical therapy was dropped from her IEP.  She was quite shocked by that.  I said they dropped it because she was able to get around the classroom and the school.  I explained that we were trying to keep her active in other ways, but that soccer lessons aren’t going well, so we need to find something else to do.  She wrote a firm letter to the school saying that PT should be added back into the IEP or that she should have a medical 504 plan.  Regular PT is an important part of preventing arthritis and other painful complications in folks with Ehlers-Danlos, which she points out in her letter.  I imagine we won’t get anywhere with the school district, but I’m going to give it a try before finding private therapy.  She gave us a list of places we can try outside of the school.  These are the times I’m thankful we have supplemental health insurance for her.

She flat out refused to have her blood pressure taken.  The doctor was really good about it.  She got the manual cuff out and let Little Sister feel it and see what it did, but the tears continued until the thing was securely back in its holder.  That reminded me that we are overdue for her echocardiogram.  I need to book that at a time my husband can come with.  I think it’s going to take both of us to get her to do that.  The first one was soon before her sensory issues reared their ugly head.  I think it’s going to be a huge challenge this time around.  It’s never a dull moment!

Otherwise the visit went well.  It was great to be able to share how well she’s doing in school (except for some of the sensory things and her fine motor delay causing some frustration.)  We absolutely did the right thing in waiting a year before starting Kindergarten.  Her teacher said she’s doing well.  That was great to hear.  Little Sister seems to be having fun and that’s what counts!

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June 10, 2009

Big Day for Little Sister

Filed under: Uncategorized — by mseds @ 8:27 pm
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Today was a big day for Little Sister.  She lost her first tooth and had a ballet/tap/gymnastics recital tonight!

Big Sister had a friend over after school and Little Sister was upset that they didn’t want to play with her.  She was up in her room screaming and crying.  I started making dinner and eventually she came downstairs.  I went over to give her a hug and she hands me her tooth!  Of course I made a big fuss.   I figured it had just happened.

About 30 min. later she tells me that she’s been keeping her tooth in her pocket.  I asked when it fell out and apparently it happened at school this morning!  I asked why she didn’t say anything, but she didn’t have a reason.  She knew that if it fell out that she had to put it somewhere safe until she could put it into her tooth fairy box.  While I think it’s weird that she didn’t tell anyone at all, I’m glad I got to be the first one to find out!

We expected the worst for her recital tonight.  She’s been participating as best she can during ballet, but usually spends tap making funny faces in the mirror when she’s not trying to hold onto the wall or table so that she doesn’t feel like she’s going to fall over.  She just doesn’t seem confident in tap shoes.  During gymnastics she likes running around, but the rest is a challenge, so she tends to goof-off.  Tonight she did fantastic!  I was so proud of her.  She certainly wasn’t the best in the class, but she tried so hard tonight and you could see how proud she was of what she was able to do.  She even tried some tap moves without holding onto something.  It was great to watch!  I also appreciate her teachers for working with her at her level.  They even brought out the balance beam that stays on the floor so that she could do the beam part.

All in all it was a great day for her!  It snapped me out of my blogging drought that was brought on after her IEP meeting a couple of weeks ago.  It got me down and I’ve been meaning to write about it, but just haven’t had the time.  I’ll try to write more about that in the next couple of days.

January 14, 2009

Delaying Kindergarten

This morning we met with a nice group of people at our school district to hear about the transition from early intervention to kindergarten process.  There was the supervisor of special education, a school psychologist, someone from the Intermediate Unit (that’s where early intervention is coordinated here) and someone else.

For the past couple of years we’ve been on the fence about when Little Sister would start.  This past summer we were about 90% sure that she would stay in pre-school one extra year.  Then we received the “based on your child’s birthday, she is eligible to start kindergarten in Sept. 2009” letter.  There was an option for a transition meeting.  We decided to set one up so that we could talk with the school district and ensure we knew all of our options.

Our options were:

1. Sign her up for kindergarten for the 2009 – 2010 school year and have her evaluated to determine what services she may receive.

2. Have her stay in pre-school and receive the same services she does currently (which are physical therapy and occupational therapy, once a week each) and start kindergarten during the 2010-2011 school year.

We did learn that if we sent her to private kindergarten she would not receive the same services.  They offer very limited services to these children and PT and OT are not on the list.  So, Little Sister would have to remain in a pre-school setting.  That was okay.  We’re happy with her pre-school.  Until recently, we thought we’d do what we did with Big Sister who went to private kindergarten for a year and then started public kindergarten.  We did that for a number of reasons and it worked very well for her.  But, this isn’t an option for Little Sister and we’re okay with that.  It’s more important that she gets an extra year of PT and OT than it is for her to be more ready to learn how to read.

After they explained our choices, they asked about Little Sister’s strengths and weaknesses.  I am not sure we gave them everything we could have if I had thought this one through before hand, like I do before IEP (Individualized Education Plan) meetings.  I think we gave a pretty accurate portrayal of what she can and cannot do.  Her hypotonia (which is caused by Ehlers-Danlos Syndrome, hypermobility type) affects her in a number of areas.  While she’s on track cognitively (she knows her letters, numbers, asks great questions, was quizzing me last night at dinner about what starts with the “ch” “t” etc. sounds, and so on), there are many gross and fine motor things that she just cannot do.  She’s 4 and a half years old and not potty trained (still in pull-ups, rarely uses the potty).  That’s certainly our biggest problem right now (I cannot imagine her going off to kindergarten without being potty trained!)  She cannot sit still (moves constantly to keep her balance.)  She doesn’t have a lot of endurance (tires very easily and her skills rapidly decline.)  She’s just starting to alternate feet when climbing stairs and forget going down a full flight of stairs without hesitation, holding hands, or going down on her bottom (thankfully we have a split-level house with short flights of stairs.)  Her fine motor isn’t great (she switches from right to left back to right again when her hands get tired; she’s just now learning to draw basic shapes, but little else; she’s working on pre-writing skills using Handwriting Without Tears, which is actually going pretty well!)

They asked what kind of therapy she gets now and how often.  We said that she was just discharged from private OT since we were supposed to be doing aquatic therapy there, but they lost access to the warm-water pool.  They did ask if she has MAFOs and we said that she wears DAFOs (Dynamic Ankle-Foot Orthotics) and that she’s switching to Sure Steps (should allow her to have more movement in her toes.)  They also asked about social interactions.  She’s not a budding socialite, but she does okay with friends.  We also talked about her developmental milestones (walked at 26 months, etc.) and the medical testing she’s had (brain and spine MRI, EEG, genetic testing, etc.) and we talked about her Ehlers- Danlos diagnosis.  I’m sure they asked some other things, too, but I’m drawing a blank.

They explained how kids qualify for services.  There are 13 areas (they didn’t list them, so I’ll have to look them up.)  They did say that since she doesn’t qualify for speech (that was dropped last summer when her speaking really improved), that she’ll have to qualify based on her medical condition.  Thankfully medical is one of the areas.

They asked if we wanted to proceed with the evaluation process.  We could always change our minds and hold her back a year at any time (preferably by the kindergarten registration cut off of May 15th so they would have adequate time to do any evaluations.)  If we went forward, they’d meet with her teachers and/or therapists for input, watch Little Sister in her classroom, do evaluations, review existing paperwork, etc.  At this point we told them that we think it’s best for Little Sister if we wait a year.  I couldn’t tell based on our conversation if they thought she’d qualify for services or how many she’d be able to get, but I did get the feeling that they thought we were making a good decision by deciding to delay kindergarten a year.

While I’d love to know what the evaluators would think of Little Sister, I really don’t want to waste anyone’s time.  My curiosity can wait a year.  It seems that Little Sister will certainly benefit from waiting a year.

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