May 25, 2014: Happy Memorial Day!

Happy Memorial Day weekend, everyone! Hope you’re enjoying the long weekend. We stuck close to home on Saturday, as I’m still recovering from being sick (more on that later!), and we had a few pre-vacation errands to run. We did make our inaugural visit (this year, anyway) to the Clayton Farmers’ Market, which was fun. It’s a very small farmers’ market, but we can walk to it from our house, and there are some vendors with very tasty produce!

And on Sunday, we headed up to Elk Grove to visit with Grandma Diane and to attend a graduation lunch for our friend Becky, who just earned her PhD in Literature from University of Nevada, Reno! Congratulations to her!! (Some of you may recall I was in that program, too, but I dropped out after one semester. Just decided it wasn’t the path I wanted to follow after all, for a number of reasons. But I did enjoy my one semester studying there.) Grandma Diane got to see Sam demonstrate his walking skills, and Theo and Grandma had a three-hour block of one-on-one time while Chris, Sam, and I went to the lunch, much to Theo’s delight!

Other than that, this week ended up being a whole lot of nothing, in a way. I had to cancel most things we had planned (appointments and such) because I got sick. I volunteered in Theo’s class Monday morning, and I felt fine. But later in the day my throat started to get sore, and by the time Chris got home from work, I was running a fever, which rapidly went up to 102.8. I felt awful. Almost as bad as when I had the flu back in September, though not quite. Still, the fever was so bad that I was shaking all over, and I had a horrible pounding headache and a sore throat.

The next day, I still had a fever of 101 and the sore throat and pounding headache, plus I had white patches all over my throat and tonsils. Strep throat, right? I went to the doctor to find out, and he didn’t think so. “Looks viral,” he said. “Plus, you say the achiness and fever is the worst part, and if it was strep the throat pain would be the worst part. I’ll order a prescription for you, but don’t pick it up today. Wait a couple of days, and if it gets worse and you think it’s strep, then pick it up.”

Okay, will do. I dragged myself to Theo’s Back to School Night because he was so excited to show all of us everything he had worked on for it—and I’m glad I went, because it was very cute. But I still felt really bad.

The next morning (Weds), the fever was down to 99 and the aching wasn’t anywhere near as bad as it had been, but my throat hurt horribly. Okay, must be strep. I decided to go pick up the prescription. I took some Motrin, picked up the prescription, and worked on some housecleaning (because apparently I’m incapable of just resting when I’m sick—that would be too logical). Halfway through cleaning the bathroom, I noticed a couple of bumps on my hands. “Gross!” I thought, “I’m getting warts!” Only there were a lot of them popping up all of a sudden. Uh oh…

The little boy I babysit once a week had hand, foot, and mouth disease two weeks’ prior, and although his mom had been assured he was no longer contagious when I watched him, I was skeptical. I quickly Googled it and discovered that the virus is highly contagious (knew that!) and that it can live in poop for weeks after the rash is gone and the fever is gone (did not know that—and he’d had two poopy diapers the last time I babysat him. I washed my hands, but…).

As the day went on, I started breaking out in the rash all over my hands and feet (I’ll spare you the mention of the other area—HA!). It felt like dozens of tiny blood blisters under the skin—like when you hike too long in uncomfortable shoes or you play on the monkey bars too long and rub your skin raw. And my throat…just ouch. It was hand, foot, and mouth disease, for sure. And it’s no fun! Supposedly adults rarely get it, but I’m living proof that you can. And the little guy I babysit also managed to spread it to two other adults (at a little daycare he goes to at his big brother’s preschool), so I’m not alone.

The moral of my story is: If you have children and they get hand, foot, and mouth disease, do two things: (1) Have sympathy for them, because it’s very unpleasant! (2) Encase yourself in some sort of hazmat suit and stay at least 50 yards away from your infected children at all times. 😉

Seriously, this wasn’t as bad as the flu, but it ran a close second. The stomach virus we all had recently was a distant third behind these two, in my book.

By the way, I’m hoping the other three members of the household already had this and are now immune to this particular strain. All three boys were sick last week with a fever and general discomfort, though none had a rash. But the rash doesn’t always appear for everyone, so I’m praying that they all already had it, just without the rash, and they won’t get it now, right before we go on vacation!

And now, can I please finally be done being sick this year?! I believe I’ve more than done my time!!

Theo got to do some fun stuff this week, since he wasn’t sick. He was very proud to show us everything at Back to School Night, and we were really proud of all the hard work he did, particularly with his butterfly journal. The class got caterpillars and observed them turning into chrysalides and then butterflies, and every day they wrote their observations and what they had learned in a butterfly journal. That is the best writing and drawing we’ve seen from Theo on anything he’s done this year, so we were really proud and excited! And that butterfly journal is definitely making it into my box of Theo keepsakes. 🙂

In other big news, Theo graduated from two of his OTs this week (and our pocketbook will be much happier!). Kaiser had only approved him through September with one that works on self-care things, like brushing teeth, doing buttons, using utensils, etc. That OT also worked on other items of concern for us, but because she was covered by insurance, she had to focus a lot on self-care. And Theo met all of his goals, so we made the decision to stop in May instead of continuing through September. To be honest, it would’ve been very hard to make our appointments in the summer anyway, as he has day camp and swimming lessons every day. So…we’re done!

And the same is true for his private OT, who we’ve been working with for two years. She focuses on handwriting and sensory issues with him, and we may start up again in the fall, but I’m not certain. She does excellent work with him, but in the fall he’ll have long school days, and I think adding OT on top of that might just be more than we want to have him try to do. So I plan to see how he’s doing in school when first grade starts, and if we feel like he needs supplemental OT, we know where to go.

In Sam news, we got some exciting information this week! As I detailed in an earlier blog post, we decided to try desiccated natural thyroid replacement to treat Sam’s subclinical hypothyroidism. The reason why is that supposedly the desiccated thyroid treatment works on T3, and Sam’s naturopath felt that was where the problem for him lay. (Synthetic thyroid treatment only works on T4, which does not seem to be a problem for him.) So, we had his one-month labwork done after four weeks of the treatment, and we waited anxiously for the results. We knew what we could see—a lot of developmental changes in a four-week span—and it seemed awfully coincidental that this would all come about after we started thyroid treatment. So we were pretty sure the treatment was working, but we were waiting for the lab results to come back to be sure.

Well, I’m pleased to report that the lab results showed the treatment is working exactly as it should be! After four weeks of treatment, Sam’s TSH and Reverse T3 levels, which were previously elevated outside of the normal accepted range, have come down into the normal range! We are ecstatic!! So the naturopath told us to keep doin’ what we’re doin’—same medicine, same dose. It’s all working like it should!!

And the developmental changes continue! Sam is trying to say far more words! Most aren’t particularly understandable, but we know what he’s trying to say, based on context, timing, and body language. In the past several days, he has tried to say dog, bird, fish, open, food, chip, red, and blue! For a kid who only has a vocabulary of five spoken words, this is pretty darn amazing!

Which leads me to my next point. Chris and I reserved judgment for a long time about what our plans for Sam were, schoolwise. We needed to see how he grew and developed and what his needs were. Would he need a lot of support, or would he be pretty independent? When he was a baby, it was anyone’s guess. And then there’s that magic range of around 18 months to 2 years, where a child (especially a boy) can suddenly regress and be diagnosed as on the autism spectrum. (Yeah, yeah, we know all too well about autism.) Would Sam face that? We didn’t think so, but we simply had to wait and see.

Well. Sam is now almost 28 months old. Although he could still suddenly regress and start displaying signs of autism, we highly doubt that will happen, as he shows absolutely no signs of it and is getting past the age where such things typically start to become apparent. He’s been in early intervention for 2-1/2 months, and we’re seeing just how very capable he is. He has quickly adapted to classroom routines—he joins circle time without a problem, participates in art projects, plays on the playground with the other kids, etc. He even eats with the other kids (well, sits with them—eating is still a struggle) and cleans up his area afterward with a washcloth, which he then toddles over and throws in the cleanup bucket. And he’s a smart little cookie, recognizing all sorts of things. He knows his own mind, too. We have been taking walks as a family in the evening, and Sam is very vocal about which direction he wants to walk. He has specific streets and paths he likes to go on, and if you don’t take him on those, he will let you know in no uncertain terms that he is not pleased. He may not have many words to say, but he gets his point across! And as for those not-many-words…well, he’s trying to add to them, and his signing is pretty impressive.

So, as I mentioned in an earlier blog, our district’s policy is to immediately put children with Down syndrome in the “severely handicapped” class. I’ve been told this by other parents and also by people who work in the district. And it hasn’t set well with me. In fact, it’s been troubling me for some time. Sam has to start with the district the day after he turns three, and apparently they will start talking to me about placement in September-ish, when he’s 2-1/2.

Originally, I thought, “Well, I’ll push for him to be put in a mild-moderate special day class, like Theo was. Our experience there was very positive, and that will be closer to a typical environment, so we can put him in mainstream kindergarten.” But lately, I’ve been reading a lot of disturbing stories from parents of kids with special needs about even the mild-moderate special day classes. And I’ve even heard stories from special-ed teachers and others who work in California school districts. Let me sum up what I’ve heard:

  • Abuse and poor treatment of children in special ed is appallingly frequent. For every case you hear about (and we’ve heard about several lately), there are many unreported cases. Because the kids are often nonverbal, the people working with them get away with more. The incidents we hear about are, unfortunately, not isolated.
  • Even in a good special ed class/program, parents of kids with DS that I talked to reported that their kids did not do well. Most said their kids made very little progress, and several said that their kids actually regressed and/or picked up negative behaviors from the other kids in the class.
  • The districts, once they label a child with DS as “special ed,” are reluctant to revise placement and move them into mainstream school. It’s a fight to get your child reclassified.

I don’t like any of this. I don’t like it one bit. Theo had a great experience with his special day class, but (1) maybe we got lucky—he had excellent teachers!; (2) Theo is extremely verbal, so I was comfortable that he would likely tell me about anything amiss; and (3) Theo’s needs were very different from Sam’s. The SDC was designed to work on what Theo needed, which was help learning to function in a typical classroom. Sam, on the other hand, picks up that end of things very quickly. Whereas it took the better part of a year (or more??) to get Theo to be able to participate in circle time, Sam happily did it from day one. Whereas Theo needed to learn how to interact with other kids (which he now does beautifully!), Sam is a naturally gregarious, outgoing sort who seems to need absolutely no prompting with adults or children. Sam’s needs, we believe, will be more academic in nature—people with Down syndrome are known to learn best through more repetition and more visually, and they do sometimes learn slower. But those issues are things that can be addressed, we believe, in a typical classroom.

In talking to all of these other parents (I got close to 50 responses to a question I posted in a forum of parents of children with DS in California—specifically posed to parents whose kids are a bit older and who have been through the preschool/kindergarten system already), I learned so much about what people had tried, and what worked and what didn’t. The vast majority found that full inclusion and mainstreaming from day one was the most effective for their kids. Most of the ones who had done special ed said they regretted it and would do it differently if they could go back and do it again. Those who had tried a combo of special ed/regular ed said that they wished they’d done full regular ed. And those who did full regular ed seemed the most satisfied with their choice and how their child was doing.

So Chris and I talked, and we came to a decision: We will be pursuing a typical education for Sam. Meaning, we want him in a typical preschool class—no special ed. And this is with the goal of him proceeding to a typical kindergarten…and on from there.

And we have decided we will not take “no” for an answer. We’ve been told by pretty much everyone that we are in for a big fight, as the district doesn’t have the inclination (or the funds) to put kids with DS in a typical environment. (A typical environment may require a one-on-one aide for him, and the district doesn’t like to provide that.) But I have a lot of good resources and the time to research this, and I won’t give up. It’s just too important.

The problem with the district is that they don’t even have a typical preschool, so putting Sam in a typical preschool means the district has to pay for a private one or find him a slot in Head Start (which is typically for low-income families, but I’m told they have a set percentage of special-needs kids they have to accept regardless of income). And the argument (for parents) is that children are entitled to an education in the “least restrictive environment.” I knew this, but I assumed “least restrictive environment” was a sort of gray area, where what I said was the least restrictive environment might not match up with the district’s idea of the least restrictive environment. But a fellow mama of a child with DS who also happens to be a lawyer shared with me this legal definition of least restrictive environment: “to the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are not disabled, and special classes, separate schooling, or other removal of children with with disabilities from the regular educational environment occurs only when the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.”

That, I think, will be very useful. Because Sam at age 28 months suggests to us that he will be capable of being educated in a “regular educational environment.” Unless he changes drastically, there’s no reason why he shouldn’t be. He doesn’t have behavioral problems, he is at a socially appropriate level for his age, and he’s capable of learning as well as any child, even if perhaps in a slightly different manner.

So the decision is made: Typical classroom or bust! If that turns out to be a mistake, then we’ll reevaluate after we try it. But we want our son to start his education in a typical environment. Because we believe in him, and we believe this can work!

With that, I’ll close and say that we’ll be on hiatus for a couple of weeks. When we come back, look forward to fun pictures from our vacation! I apologize that there aren’t more pictures this week–I plead illness!

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