Just Have Your People Call My People...

Ni-Hao, Kitty

After much pressure from Sammi's school, and us finally getting off our butts to do it, we got her a new, full-size backpack. I think a year ago, when we bought her her first backpack, there was no way she could carry a regular one. The little one knocked her over when she wore it as it was! Now my little girl is growing up (and up, and up, and a little bit out...) and it was time. We had to cram her notebook in the small one, and now that she rides the bus, she often has art projects or her wet clothes when she's had an accident to bring home with her. I've been holding out for a Ni-Hao Kai lan backpack, but can't find one anywhere, even though Target, Walmart and ToysRUs seem to be advertising them. I saw a few online, but wasn't prepared to spend $23 plus shipping. So I settled for an old, classic favorite, Hello Kitty. Samantha doesn't really have any experience with Hello Kitty, but I have very fond memories of being in a department store when I was a child (no more than 7 years old) and getting my parents to buy me some sort of Hello Kitty notebook or pen set or something that they had on a shelf display there. I had always asserted that I was reincarnated from a cat when I was little, as evidenced by the fact that I loved cats and that I was a Leo (albeit on the cusp, and only a Leo according to Cosmopolitan magazine and a Cancer by most others). When I was a bit older I lived in Okinawa for a year, and was astounded by the amount of Hello Kitty stuff there was everywhere! I quickly abandoned my childhood love in favor of "Namenayo" (just doesn't look right in English letters...), these real, live kittens that are dressed up in cute little outfits and posed for photographs, doing everyday things, like going to school, dancing, eating at a restaurant. Very funny, very cute, probably not so popular with the animal rights organizations (hey, I was only a kid and thought it was great!)... Apparently the Japanese are still into them.

Anyway, I digress. Hello Kitty has just recently celebrated its 35 year anniversary. It must've just come out when I saw it for the first time in that department store way-back-when, and I'm happy that my daughter can enjoy it as well. When I gave her the backpack, I told her it was Hello Kitty, but she said, "Ni-hao Kitty" instead. Every time I try to correct her and say it's "Hello Kitty," she says "Ni-hao Kitty." And it's not like she can't say "hello," because she does it all the time. Maybe she's started to think in Mandarin? On a whim, this morning as she was watching Sesame Street and eating her breakfast, I asked her, out of the blue, to say "1, 2, 3" in Chinese. Without missing a beat, and speaking with her mouth full of waffle, she complied. It really does show how malleable the brains of young children are, and how able they are to learn other languages.

Samantha's teachers, practicing good positive reinforcement, sent us an e-mail within the hour of her arrival at school that first day with the new backpack. They expressed how thrilled they were with the new bag, and how cute it is. Yeah, yeah, we get the hint!!! By the way, the 2nd photo is of Samantha ringing the doorbell. She loves to do that every time she comes in or goes out. Calls it "ding dong."

Flowers for Algernon

I read a very interesting article yesterday, posted in Wednesday’s Los Angeles Times newspaper. In a nutshell, it documents research currently being conducted to develop a “cure” for Down syndrome. Setting the fundamental intent of the article aside for a moment, I need first to harp on a few little details that are grating on me like nails on a chalkboard (or like Samantha grinding her teeth!). I thought reporters were supposed to do their research first before writing an article (especially for such a highly circulated publication!). The term “cure,” used several times in the writing, is tremendously inaccurate. Down syndrome is caused by an extra copy of the 21st chromosome which is present in ALL of the cells (unless the person has mosaic Down syndrome, where only some of the cells have the extra copy). You can’t “cure” that. Now I’d swear that the first time I read the article, they referred to people who “suffer” from Down syndrome (as many articles tend to do, which drives me crazy), but now, upon re-reading, I don’t see any reference to that. Could they have changed the wording somewhere along the way? Maybe I just wanted to see that so I could be extra-annoyed. Just as an FYI, my daughter does not suffer in any way. While I would have preferred it if she had been born without a heart defect that she needed surgery to repair, she’s certainly not suffering! Finally, the article calls Down syndrome a “disease.” Uh, correct me if I’m wrong, but genetic issues are not diseases. I feel like that wording perpetuates the fears of the ignorant that they can actually “catch” Down syndrome. At least People First language was firmly in place throughout the article.

Now, the intent of the article was to explain that research has shown that the brains of people with Ds are unable to make norepinephrine, a hormone and neurotransmitter. The drugs Droxidopa and Xamoterol both convert to norepinephrine in the brain, and in mouse trials, mice with a replicated version of Down syndrome responded with increased, “normal” cognitive functioning when given Xamoterol. However, the effects were short-lived, and the mice returned to their previous state quickly.

While I do find this research very interesting, as soon as I read this, I was reminded of Flowers for Algernon, a book by Daniel Keyes written in 1958. I read it for a class in 9th grade, and was immediately both haunted and obsessed by this bittersweet tragedy about Charlie, a man with a cognitive disability who becomes the first human to undergo an experimental surgery to increase his intelligence artificially. A mouse named Algernon was the first successful recipient. Throughout the story, Charlie, placed under a virtual microscope by doctors and researchers, begins to show all of the positive signs of an increased mental capacity. He eventually becomes a genius, eclipsing the intelligence of those around him, and continuing his own research on the procedure, only to discover that there is a flaw in the research, and that (in the fictional context of the book), “Artificially-induced intelligence deteriorates at a rate of time directly proportional to the quantity of the increase.” Algernon deteriorates, becomes unstable, and dies. Charlie begins to deteriorate as well, evident to the reader through his own words in progress reports he wrote throughout the trial.

I cried at the end of this book, and still get teary thinking about it. It posed, at the time, fictional ethical and personal dilemmas that seem to be now coming to fruition. Would you subject someone you love for who they are and the way they are to a treatment that would change them, possibly only temporarily? Would you really want to know what they would be like if they had a higher intelligence? Would you be prepared for personality changes in this person? While it all sounds very tempting, I know that my answer would be an undeniable “no.” I have sometimes tried to think about what it would be like if my daughter didn’t have Down syndrome. It is always a brief thought that gets shut down and put out of my mind immediately. I can’t imagine what she would be like, and I honestly don’t want to. She is Samantha. She is my beautiful, smart, funny, precocious, stubborn, amazing daughter, just as she is. Anyone different in her place would be a stranger to me. Would I change some of the physical issues that affect many people with Ds? Certainly. I would love to remove heart defects and thyroid problems, celiac disease and early-onset dementia, leukemia and atlantoaxial instability. The list could go on. I would also love to remove some of the challenges society places in the way of people with disabilities, and create more awareness. But would I change her? Nope. Not even for a day.

H1N1, a Dresser, 3 Paramedics, 5 Hours and about 100 More Gray Hairs

The week just started off badly. Samantha fell asleep on the 10-minute bus ride home from school on Friday, carrying a report from her teachers that she didn’t participate at all that day, an unheard of occurrence. After a confirmed fever of 101 and a visit to the doctor, it looked pretty likely that she had H1N1. We never got a chance to get her vaccinated, something that I was on the fence about but would have liked to have done anyway, if it would protect her from illness. I vacillated back and forth about the vaccination (I had already gotten her the seasonal flu vaccine), and was thrilled to hear that it would be offered in her school. The day before the school offering, a notice came home to parents that due to a lack of supply, the clinic was cancelled. I wasn’t sure how to feel about that, but it was likely that she may have already been infected by that time. The pediatrician put her on Tamiflu and told us good luck trying to find it, as supply was getting light. Steve found it on the first try, at CVS. The Tamiflu worked well, minimizing her symptoms and keeping her happy and fever-free. On Saturday, however, we got a little taste of the odd side-effects of the drug and now know why they hesitate to give it to older children or young adults – Sammi seemed to be hallucinating, giggling in her own little euphoria and saying things that didn’t make sense (well, things that made less sense than usual, at least!). She was staggering around some, like she was drunk. Apparently this is common, and has resulted in some attempted suicides (euphoria, sense of invincibility) among teens and young adults.

Due to the illness, we were keeping her home from school until she finished her doses of the meds and we could establish that she was fever-free without medicine. On Tuesday morning, moments before I went into her room to get her up, I heard one of the most frightening sounds of my life—a tremendous crash, followed by hysterical screaming. I ran into Samantha’s room and found her pinned underneath her large, full, heavy dresser, with only her head and part of her right leg free. I lifted it off of her and Steve and I kept her still and tried to calm her down while I called 911. The paramedics arrived in about 10 minutes (I’m not exactly sure what took them so long, as the firehouse is quite close by), and after assessing her for breaks and any obvious internal bleeding, loaded her into a neck brace and onto a back board for transport to the hospital. I rode with her, while Steve followed along in the car. Samantha calmed down a bit, holding onto her blankie for dear life. The three paramedics were really amazing with her, and one, in particular, seemed to know all the right things to say to her to keep her calm. She even waved to him and said hi. I think having two young children of his own helped a lot. At the hospital, they hooked her up to fluids then took her for a CT scan of her head and neck, which came back normal. Steve stayed with her for that, and she did amazingly well. Then she dozed for a while until she was removed from the back board and taken for another CT scan, this time of the rest of her body, to look for tissue and organ damage or internal bleeding. Again, nothing. After that, Samantha decided that she was done and wanted to play, so she played doctor with her stuffed pink rhino, Lulu. Steve helped her put the neck brace on Lulu, and Samantha pretended her detatched pulse-ox lead was a stethoscope, listening to Lulu's heart, looking in her ears, and checking her eyes. After five hours in the hospital, we were finally cleared to go home. I’m still in absolute awe that a) she wasn’t killed, b) that her bones and internal organs weren’t crushed and c) that she had absolutely NO damage whatsoever (apart from a little bump on her head where a small lamp had hit her on the way down). Not even a bruise. It really was miraculous.

A few funny moments occurred when people would try to ask Samantha questions. “Samantha, can you please straighten your arm out for me?” (requested as Samantha was screaming from having just been stuck with a needle for an IV) “Samantha, where does it hurt?” Steve and I would just look at each other and sigh, then explaining patiently that she doesn’t understand everything, and isn’t going to respond accurately, even if she does. “Does this hurt?” “Yessss!” (answered with a big smile). Hahahahahaha. To be honest, with all the sheltering we’ve done with her, I don’t really think she understands “hurt.” Although it would be great if she could tell us that the reason she’s cranky one day was because she had a hell of a headache and it really HURT. Great! I’ll get the Tylenol and fix it up right away! Problem solved.

Child-proofing is the big lesson to be had from this. After I posted on Facebook about what happened, I received many, many responses from people who said this was the push they needed to start anchoring their children’s dressers and bookcases. I’m so glad this has raised some awareness for us and for so many others. We’ve now removed the dresser from her room and bolted it down where it now resides in her closet (which is now protected by a child-proof lock that is also practically parent-proof as well). We’re going through the house carefully to anchor other large pieces of furniture as precautions. As she gets older and more curious, and as we begin to afford her a little bit more freedom, we want to be sure there will be no more surprises.

Eighteen Years

Wow, it’s been 18 years already since the boy of my dreams, an English glam-rocker boy with long, black hair, and I said “I do.” The time has really flown. It’s hard to believe that we’ve been married longer than I was alive before I went to college (yikes!) and, as I had stated last year on this very day, the same amount of time as the internet itself. How things have changed (including us!). Marriage is never an easy, smooth ride all the way through, and if people are set on believing that, then they’re the reason that the divorce statistics are so high. We learned early on that we have to take the good with the bad, and work through things. We have to grow with each other, and admit and accept our shortcomings, both about each other and about ourselves. (Of course, I’m sure Steve would say I haven’t done that yet!) We have to acknowledge our differences from each other, and realize that we are not the same person. Those are what make our relationship work, and what make it continue to be interesting, every day. Adding our little princess, Samantha, to the mix has made our lives even richer, and I wouldn’t have things any other way. I know I’m not the easiest person to live with, but Steve’s an incredible, devoted dad and husband. Happy anniversary, Steve. I love you!

Wordless Wednesday: It Wasn't Me!!

Development Updates

This is going to be one of those blog posts where I feel conflicted about how much information to give. I had initially started this blog as a place to celebrate my daughter and track her achievements, solicit advice from my peers and open a window into our lives for those friends and family members who don’t live nearby. I viewed it as a “safe place” to do those things, without feeling like I was bragging about Samantha’s accomplishments when I was just simply excited about them. The more readers I have, the more sensitive I become, and I really, really, really don’t want to put anyone off, and certainly hope that some of the things I talk about that we work on with Samantha will help or inspire others who may be going through similar things. That being said, for all the things I’m so proud of, there are areas of her development that frustrate me, which I also won’t hesitate to mention. Oh, and I also don’t want to bore anyone to tears, either… You guys are all really valuable to me--I’d love any feedback!

So now for some updates on Samantha’s development, since I haven’t really posted anything lately.

Sammi has been working very hard on sentences and sentence structure lately. In her private speech therapy, the therapist lets her pick out what toys she wants to play with, then they talk about the toys and what they’re doing. I guess I was always so wrapped up in having Samantha learn the words with correct pronunciation, I never really thought as much about really working on the exact sentences themselves. The therapist gave her a paper with four photos of people on it, and Samantha is encouraged to tell what the people are doing in each photo, such as “Riding a bike,” “Clapping hands,” “Dancing” and “Kicking a ball.” She’s able to do them easily. It’s odd, but Samantha has somehow understood the present participle (“-ing” words, mainly) for some time now (at least 6 months, if not longer), without having been taught this important principle, probably initially through mimicry of what we say (“oh, it’s raining!” or “the baby’s crying.”). She’s never gotten it confused with the use of regular verbs, and will issue single-word commands correctly (“Go!”, “Stay!”, “Cry!”). I’ve been quietly amazed by that, but now am more publicly amazed as she begins to add in the useful and important words such as “and,” “is” and “the” to complete her sentences. She likes to skip over those in favor of what the therapist calls the “meat words.” I know I’ve gone on about this before, and do apologize for sounding like a broken record, but when I look back to 6 months ago, she was barely stringing together multi-word sentences, and was still skipping the first letters of many words.

Gross motor skills are another point altogether. I think the fact that we’re somewhat over-protective parents (hey, she’s our only child—what can we say?), constantly telling her to slow down, don’t run, be careful, etc. We don’t quite trust her not to let go while on a swing, or to take the stairs on her own, or even to run without falling down. I know that for certain things we just need to give her a little bit of leeway to explore and discover her limitations on her own, and at 3 ½ years old, she definitely wants to do just that. She likes to control her environment. But we also need to encourage her to be more active. She’s a big girl, and just going to get bigger if we’re not careful, if you know what I mean. When we take her outside to play, she spends only a minute or two out there before heading for the stairs to go back inside (“Home!” she’ll say). At the playground she is incredibly tentative on the equipment, shying away from trying to climb ladders, etc. Just like her mommy, I think. I was never one to take risks, and have memories of me at 6 years old throwing a hissy fit at having to load onto the ski lift and ski down the bunny slopes, even completely attached to my instructors. But I have to remember, I did get over that, eventually. Sammi also doesn’t know how to bounce from her knees. I know she’d absolutely love it if she tried it, but I think this is a time when we may need to modify her IEP to address it. Her new orthotics have been helpful, and she seems to have more stability through her feet and ankles. Hopefully she can continue to progress with them.

I really have rambled a lot in this post. Maybe I’m just making up for some lost time. I had planned last year on doing the 31 for 21 blogging for October being Down Syndrome Awareness Month, but never managed to pull it off. There is always next year.