Quarterly Update

I have basically given up on the whole blogging thing, but just in case there is somebody who still wonders what is going in on with Hope, I figured I’d add this little update.

the girls, in a happy moment just before getting their shots for school :0

Hope turns 3 on Friday.  We’ve had a ton of doctor’s appointments over the last 6 weeks as we get ready to transition out of early intervention and into the realm of the public school system.  Yesterday we had Hope’s first IEP meeting and were very pleased with how things went.  The assessment process leading to the meeting was very thorough and consisted of several observations of Hope, both at home, at EPU, and at the school itself by representatives from health, speech, preschool, and psychologist’s office for the school district.  Not sure what to expect, we were pleasantly surprised at how thorough and accurate a picture of who Hope is these observations managed to generate.  Hope qualifies for special education services and will begin preschool in a special-day preschool class as soon as next Monday.  I have an appointment to go visit the potential class this Friday morning, it is not at our “home” school – however it is probably exactly the same distance from our home as our home school is, so in that regard, it couldn’t be more convenient.  It is a five day/week program for 2.5 hours a day, and she is also eligible for a summer program so that she will not have to go three months without services during the summer.

I’ve done a 180-degree turn on Hope when it comes to preschool over the past few months.  Initially I didn’t think it would be necessary, that whatever she needed I could provide.  I surrendered that idea, and decided that a typical preschool would probably be enough, maybe with a little speech on the side.  But over the last several weeks I’ve begun to see that Hope needs something a little more “special” and I’m fine with that, really.  I am excited for her to be perfectly honest, I think she’s really going to enjoy school and I am glad that she’s going to have something everyday that is “just hers.”  Hope will be able to attend this preschool for the remainder of this school year, the summer, and then two full academic years and summers until she is ready to join a kindergarten class at age 5.

We also have had to get Hope “reclassified” for services through Regional Center and it looks like she will remain a client through the “Intellectual Disabilities” diagnosis.  Prader-Willi Syndrome is not an “automatic” qualifying diagnosis (like Down Syndrome, epilepsy, autism, or cerebral palsy), so there is a fifth category – formerly called “mental retardation.”  After some psychological testing it was determined that Hope falls into this category and as such remains eligible for services.  What services will those be?  Probably not much now that her educational needs are the responsibility of the school district.  Up until now, Regional Center has been paying for Hope’s early intervention services through EPU.  Eventually, when she is much older, Regional Center services will again become very important to our family, but for now it is a relief simply to know that they remain there as a safety net and will continue to play a role in monitoring Hope’s progress.

Other than that Hope is healthy and happy.  She has finally started gaining some weight and since Christmas has probably put on a good 3-4 pounds.  That doesn’t seem like much, but she spent most of last year weighing 21-22 pounds so it is a big deal.  We continue to struggle with her diet, lately her persistent diaper rashes and GI issues.  We went so far as to get a GI consult and performed at least a dozen different blood/stool tests.  For awhile we thought we were looking at celiac disease but fortunately that was not the case.  The results are not all in at the moment, lactose intolerance is still a possibility, but it seems that the more likely cause is simply toddler’s diarrhea and will hopefully clear up over the next year.

Hope is walking and starting to run, she talks a lot but is only intelligible about 30% of the time.  She’s got an attitude and a temper and knows what she wants, but she is still very sweet and cuddly.  We have noticed her interest and awareness of food increasing, and her possessiveness of food has become a bit of an issue (for instance, she doesn’t do “family style”…if a plate of brownies is on the table, they are HER brownies and will throw a fit when everyone reaches in to grab one.  She’s fine as long as food is brought to the table on separate plates, but she doesn’t like seeing one person grab from another’s plate, even if it’s not hers).  However the seeking of food is not an issue at the moment, primarily because we don’t leave food out where she can see it and because she is not able to open the refrigerator or the pantry door.  Still, she doesn’t spend an inordinate amount of time in the kitchen anyway – she is definitely not preoccupied with food.

All in all, things are pretty smooth sailing at the moment where Hope is concerned.  I’ll be glad to get the last couple of meetings out of the way and return to the a less full schedule but can’t complain one bit at the way anything has turned out.  We’ve got a clean bill of health, and a great IEP and (thanks to some inside information) we know the program Hope has been recommended to is very, very good.

Grace is is pushing 5 and will be starting Kindergarten next fall.  She seems excited for Hope at the moment but I imagine there will be a bit of jealousy come Monday when Hope goes to school and Grace doesn’t.  I’m sure Grace will run me ragged for the 2.5 hours we are without Hope each day and there is part of me that is looking forward to it.  Grace is a lot of fun and a lot of energy and I’m sure it’s been hard for her to have to go at her sister’s speed (or whatever speed I can manage with the two of them).  A little “mommy & me” time will probably be very good for our relationship.

I am keeping up with my running.  I’ve only been averaging about 12-15 miles/week since the marathon – due to a combination of schedules, motivation, and the fact that I simply cannot drag my butt out of bed in the morning and have also developed a really wimpy sensitivity to the cold.  I’m looking forward to warmer weather and daylight savings time.  Still, my fitness is surprisingly good, and I’ve been training for a half-marathon next month and seem to be pretty much on target if my long runs are any indication.  The week following the half-marathon I have joined a team raising awareness for Prader Willi Syndrome that is running the Ragnar Relay from Huntington Beach, CA to Coronado Island (near San Diego) (you can donate to our team by clicking the link above).  I’ll have to run about 17 miles or so for that, but it is split over three runs so I’m not too worried about that.  I am still enjoying the running and now that Woody has gotten older, he comes running with me and I REALLY love that – much more that I thought I would.

There have been a few developments on my end too, if you can call them that.  A couple of months ago, in a roundabout kind of way, Tammy sort of “discovered” that I might have ADD.  It’s a long story, suffice it to say she had some conversations with a friend who recently had the diagnosis in her family and was talking about what ADD looks like in adults and red flags just kind of started flying all over the place.  So we looked into it and by sheer chance also caught a documentary on adult ADD in the same week.  The similarities were shocking enough that I called my doctor and he made a referral to a psychologist.  Tammy, my mom and I went in for a consult and all filled out some questionnaires and later I went in for some more elaborate testing – I guess to determine what I am capable of and to rule out something like early-onset Alzheimer’s.

I had just sort of figured (before Tammy said anything about ADD) that my increasing problems with distractibility, memory, and organization were just the results of my ongoing depression issues and had recently changed medications in an attempt to improve things.  Come to find out it was a little more than that.  I do have ADD, that’s now been confirmed.  But I have also been diagnosed with something called Cyclothymia, which is on the bipolar spectrum – basically a “rapid cycling” form of bipolar disorder.  The highs and lows are not as extreme (I don’t think I can fly and I don’t want to kill myself), but they are also much shorter in duration – as is the “even keel” in between episodes.  Essentially, I am going between ups and downs almost constantly.  None of the phases lasts more than four days and typically they are much shorter, even as short as a few hours.  Needless to say, it causes problems – a lot of them, and probably more for my family and friends than for me simply because I’ve learned to live with the unpredictability.  I’ve probably had this since I was in high school, the ADD too.  With both, through trial and error I’ve learned how to cope, conceal, and compensate.  But I certainly went of the rails after Hope’s diagnosis — of course then everyone sort of expects you to be “off”.  Over the last couple of years though, it’s been a struggle to regain control and finally, in this past year, there’s been sort of a coming to terms with the possibility that control wasn’t really in my grasp at the moment.

So now, with some answers finally, we can begin to deal with this.   First and foremost it means adding a new medication to level my mood.  When that’s done, we can look at adjusting the antidepressant and the medication I’ve been using for the ADD, both of which have not been as effective as they could be because of the constant cycling.  At least there is some explanation though, for all the crazy/dumb shit I do/don’t do.  When I’m feeling good (as I am at the moment), that’s some consolation and a good thing.  When I’m not feeling good (as in the last four days), it’s something I am still having a really hard time coming to terms with.  I’m not sure why exactly, aside from having a name to put to my behaviors it’s not like I’m unaware of the the way I am and the things I do.  Yet, somehow, seeing it all on a page with a title on top and reading it as “this is what I put my family through” is pretty tough and I wasn’t prepared for it.  But oh well.

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One Response to Quarterly Update

  1. Angela says:

    Hello out there!! Just wondering how things were going with your beautiful little Hope! Please come back to the blogging world!!! You are missed. 🙂

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