Trunk or Treat & Random Stuff

On Halloween, we went to our local Trunk or Treat. Laurie ended up wearing the same costume as last year. We did buy her a new witch costume at WalMart, but their selection was awful so she decided she liked her old one better.

It was such miserable weather. Lots of rain. When it let up a bit we drove the 10 minutes to the Trunk or Treat. I didn't bring Kayla because she was happily playing and I knew she wouldn't understand the whole concept and would just stop and drop in the wet parking lot anyway. There were only about 5 or 6 cars there this year. I don't know if that was because of the rain, the economy or because people here tend to leave on the weekends and Halloween fell on a Saturday this year.

Laurie wasn't thrilled with her small candy take and wanted to go out Trick or Treating in the neighborhood. Except we live in a rural area and even where there is a neighborhood, the houses are on 1 - 2 acre lots and pretty far apart. I considered driving and letting her run in and out of the car, but I really didn't feel like going out in the rain.

So I bribed Laurie with the promise of getting her some candy and a toy at WalMart the next day instead of going out. Her response: "Can it be an expensive toy?" Sheesh.

She ended up getting some Blendy Pens which weren't too expensive and spent all of the next day playing with them.

And the candy was half off too! I only bought 1 bag of 105 assorted Hershey brand mini candy bars. Good thing I only bought 1 bag because they are almost gone already!

While at WalMart, I kept handing Kayla toys to see if she would be interested in them for Christmas. She kept looking at me like I was nuts because she'd be happily playing with a toy and then I'd take it away and put it back on the shelf! I did buy one toy for her because it was the only one there. It's a musical flashing toy (of course) but I had to buy it because it has the B-52's "Love Shack" on it. Seriously, I would have never imagined in my alt-rock-punk-crazy 80s days that a B-52's song would end up on a kiddie toy! (I was just looking at the LittleTikes site while looking for a link to the toy and saw that the PopTunes guitar has The Police's "Message in a Bottle" on it!)

I was so NOT into Halloween this year. I didn't even get Kayla a costume this year and had to dig out one from 2 years ago for her school's Halloween parade. And the pumpkins are still sitting uncarved on the dining room table. I guess they are now Thanksgiving decorations!

On Friday, Laurie got sent home from school early because the nurse said she had a headache and a fever of 99.8. Ummm, I didn't think that was high enough for fever! When I went to pick her up she one of those masks on. Sheesh, I think they are over-reacting a bit at the school! She didn't have any fever by the time she got home.

I got one of those new temple thermometers. I tried it out on Kayla and it's not any easier than using an ear thermometer on her. But it is supposed to be more accurate than the ear ones for kids with Down syndrome because they have such tiny ear canals. I guess I will just have to improve my "holding the kid down while pressing thermometer on head for six seconds" technique.

A reminder that in the US it is Election Day! Go vote! Yeah, I know that it's an off year election and no one seems to pay much attention to those. But if you think about it, the LOCAL elections affect your life (as in services, zoning, development and taxes) much more than the big state/national elections, especially in small communities like where we live. So go vote!

31 for 21 - Day 31 - Not Scary

Well, as the 31 for 21 challenge comes to close, I'm glad I made all 31 posts, even if I had to double up on a couple of days!

I know that most people reading this blog and others in the 31 for 21 challenge already have some connection to Down syndrome. But if you happened to wander here from Facebook or something, I just want to stress that Down syndrome is not scary!

I know almost everyone has fears when they hear that their child has Down syndrome. That's OK, it's a big unknown if you haven't been around people with Ds.

And I used to actually be concerned that people might find Kayla to be scary since she is so "low functioning" -- I even blogged about it during last year's 31 for 21 challenge. But I hope now that if you have a newborn or very young child with Ds and happened upon here, that you would see that regardless of "level of functioning", you'll love your child unconditionally.

How can anybody think this is scary?

All those fears are OUR fears, and OUR problems and OUR hang-ups.

With Down syndrome and the 92% abortion rate being in the news a lot again, there's a lot of commentary from "the other side". I tend to not read this stuff because I don't like negativity in my life. If people feel so strongly about how miserable our kids are that they have to comment on it, then I'm not going to be changing their minds. A lot of those people say that parents who don't think their kids are "suffering" must be delusional. Does my kid look like she's "suffering"? Sheesh, I don't think you get a purer expression of joy!

31 for 21 - Day 30 - Down syndrome & autism

Wow, I can't believe the month is almost over! It's funny, I was looking over my 31 for 21 posts and few of them have anything directly to do with Down syndrome. I suppose that's because while Ds is part of our lives, it's no longer this huge unknown dominating our lives like it seemed in the beginning. Sure, Ds affects us. After all, Kayla is five and functions more like a two year old. But other than that, it's not a big deal.

But I did want to make sure I got a post in about Down syndrome and autism. It's only been recently that medical professionals realized that these two conditions could coexist. Many professionals STILL don't think they can exist together, as evident by Kayla's pediatrician who questioned the autism diagnosis and wanted to know if we were sure she wasn't just "really mentally retarded". Ummmmm, NO. Whatever.

One thing I love about the internet is that everything is saved for eternity, LOL. I can look back at an early post on Downsyn about my concerns about Kayla. This was from March 2007, about a month before Kayla's 3rd birthday:

OK, reading some other posts, now I'm getting a little concerned. Here's some things I'm worried about with Kayla:

--Language regression. She used to use words and signs, now she just mostly grunts and yells. Thought this was just because she was learning to walk, but it hasn't come back yet.

--Stimming on electronic musical toys. She'll sit for almost an hour with her head pressed up against the speaker of her favorite toys and push the same button over and over and over...

--Tactile defensiveness. Doesn't like any new textures. Won't play with playdoh, foam, sand, etc. Doesn't like certain types of motion (can't put her on a rocking horse or one of those quarter rides at the mall). Won't tolerate very noisy places, like a bowling alley. Doesn't like stoppage in movement. Screams and cries when the car or bus stops. Hates water and the bath.

--Arm flapping

--Fascination with her hands and binky. She'll lay in bed for an hour just shaking her binkies in front of her face, so close she goes cross-eyed

BUT...

--she is very affectionate, loves giving hugs

--does play with other people/kids, will roll a ball back and forth, for example

--makes good eye contact.

Ugh, I'm soooooo confused! Wish there was some way to get an easy diagnosis!

Ahhh, diagnosis! Here's the diagnostic criteria for autism:

(I) A total of six (or more) items from (A), (B), and (C), with at least two from (A), and one each from (B) and (C)

(A) qualitative impairment in social interaction, as manifested by at least two of the following:
1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
4. lack of social or emotional reciprocity ( note: in the description, it gives the following as examples: not actively participating in simple social play or games, preferring solitary activities, or involving others in activities only as tools or "mechanical" aids )

(B) qualitative impairments in communication as manifested by at least one of the following:
1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
3. stereotyped and repetitive use of language or idiosyncratic language
4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

(C) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects

(II) Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
(A) social interaction
(B) language as used in social communication
(C) symbolic or imaginative play

(III) The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder

It's usually the social part that throws off people when considering the dual diagnosis. Often kids with Ds/Autism are still very social, but perhaps atypically or inappropriately so. In Kayla's case, she may hug everyone, but she doesn't play with or acknowledge her peers these days.

Every now and then I run across a blog posting or forum posting about a parent who is concerned that their child might have this dual diagnosis. If your kid is JUST stimming, or JUST sensory defensive, it's likely NOT autism, but probably some sort of sensory integration issue.

Impairments need to be in all three areas -- social interactions, communication, stereotypical behavior. Although technically if someone shows some but not all of the above behaviors, they can get the catch-all PDD-NOS diagnosis, which I hate and hope they get rid of in the next DSM.

Some people think that autism affects a larger percentage of people with Down syndrome than the general population -- 5% - 10%.

If you still have concerns, I highly recommend downloading this Disability Solutions. Also, Riverbend has a nice section on Down syndrome/autism, click on the Medical Series folder (the info is a bit dated, but still pretty good). Try to find a professional familiar with the dual diagnosis if you want a formal diagnosis. I recommend Dr. George Capone at Kennedy Krieger Institute in Baltimore, Maryland. He's considered "The Man" when it comes to the dual diagnosis (apologies to Amy, who didn't have a great experience).

Why would you want a formal diagnosis? Because a lot of doors open up when your kid has an autism diagnosis. Obviously it's what's on everyone's radar screen right now. And although education and therapies are supposed to be based on an INDIVIDUAL and NOT a diagnosis, in reality that's not the case. You often can't get ABA without an autism diagnosis, even though that method has also been shown to be helpful with kids who just have Down syndrome or other developmental disorder.

Finally, I just want to say that the whole autism thing is just another "thing". I know people get terrified when they hear the A word. Understandably so. It's been played up in the media as some horrible thing. It's another obstacle our kids have to overcome. And, yeah, I sometimes wonder if Kayla would have been one of those "superstar" kids with Down syndrome if she didn't have the autism, instead of being so "delayed" she doesn't even register on any of the evaluations.

But autism doesn't change who KAYLA is, it is a part of her as much as Down syndrome is, maybe more so. And who KAYLA is, that's all that matters.

31 for 21 - Day 29 - Toy Shopping Blues

Since Kayla finally went back to school yesterday, I was able to get out and do a little shopping. I picked up for Laurie a couple of DVDs for Christmas and figured I should probably look for something for Kayla, too.

I was thrilled to see that Leapfrog has a new Alphabet Toy out, the Alphabet Apple to replace Kayla's favorite Alphabet Town. And I found a couple of See and Say, Jr. toys that she doesn't have yet. And then I picked up a little musical flashing toy, thought that Kayla would love it and then happened to glance down at the age range. THREE MONTHS. Gah. I put it down. At least the alphabet toy was ages 3 - 5 YEARS.

How many musical flashing toys/alphabet toys does the kid need anyway?

I remember what a fun age 5 years was for buying toys for Laurie. Littlest Pet Shop. Disney Princesses. Barbies. Polly Pockets. BuildABear. Groovy Girls.

Kayla's not interested in any of that stuff. Well, she likes the Groovy Girls, but just to dangle and chew on. We still have an entire city of Little People and GeoTrax and boxes of PopOnz and MegaBlocks that Laurie outgrew sitting in the basement. I'm debating on Freecycle-ing them at this point, because with Kayla's lack of pretend play, why they heck am I keeping them? I guess I'm just hoping that MAYBE one day she'll play with them. If I give them away that's like giving up. Although I did give away a bag of princess dresses and still feel awful about it.

And speaking of Laurie, she's at that in-between age (8) where I don't know what to get her, either. She's pretty much outgrown the stuff I mentioned before, although she'll drag a box out every now and then. Last year I bought a bunch of board games for her, but I can count on ONE hand the number of times we've played them. She doesn't like to play video games, even though she has a DS and we have a Wii.

I like the idea of buying her some creative building systems, but she ends up with pieces all over her room and doesn't put them back in the right boxes. Right now she has pattern blocks from 3 different sets all mixed up, so she can't even do the design cards in the sets because she can't find all the pieces! Thought about those cool fractal coloring books, but she never puts the lids on her markers and they dry out. Sigh.

Maybe they will just be getting clothes and books this year!

31 for 21 - Day 28 - Back To School!

Yay! Kayla went back to school today after a week off after her surgery. I think she was excited to go. She got up bright and early at 5AM (!!!) and was laughing and laughing and laughing. When we told her she was going to go to school on the bus she clapped and got her bus toy out, LOL.

Unfortunately, it was raining so we had to wait in the car. Kayla hates waiting in the car. And she was trying to finish her breakfast -- a waffle -- in the car. But when the bus came she still had a big wad of mushy waffle in her mouth and wouldn't swallow it or take a drink of water, so I had to swipe it out with my finger. She hated that! At least she didn't bite me!

I guess she had a good day in school. The school didn't call for anything and the only note sent back was to send in pull-ups and that she didn't pee all day (but was drinking). Actually, she STILL hasn't peed yet and it's 6:30PM! I think she's holding it on purpose because she doesn't want to pee on the potty and doesn't want to pee in her diaper. (I think JoyMama can relate). Or poop either, for that matter, since she hasn't pooped since Friday. Sigh. If it all "comes out" tonight, it's going to be a messy one!!

31 for 21 - Day 27 - On Language

A lot has already been written about language in regards to Down syndrome. From the National Down Syndrome Society:

• Down vs. Down’s: NDSS uses the preferred spelling, Down syndrome, rather than Down’s syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an “apostrophe s” connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using “Down syndrome” as well.
• People with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”
• Down syndrome is a condition or a syndrome, not a disease.
• People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it.
• It is clinically acceptable to say “mental retardation,” but you should use the more socially acceptable “intellectual disability”.

And of course there's the R-Word campaign.

But does what you preach about the R-Word carry over to your other language?

For example, I was watching the news with The Hubs and commented "That's insane!"

And of course stopped to wonder if people who advocate for mental illness take as much offense to people says words like "crazy", "insane", "schizo" as we do to the R-word.

Laurie watches I-Carly a lot, and often they comment "That's so lame!" Are people with physical disabilities writing to complain about that?

And sometimes when our kids aren't watching where they are going, or don't come when they are called, perhaps we might say "Are you blind?" "Are you deaf?"

Are all these examples equally as offensive?

I guess my point is while advocating against the use of the R-Word, perhaps cut some people a bit of slack. No doubt before we had kids with Down syndrome, or autism, or other intellectually disability many of us were equally as ignorant. And to try to apply our sensitive language across the board. If the intellectually disabled deserve respect in language, so do other disabilities.

Changing the world, one word at a time....

31 for 21 - Day 26 - HBO Looking for kids w/disabilities

Yeah, I'm getting behind again. Fortunately I got this in my email, for a quick catch-up post, LOL.



What Makes Your Child Exceptional?

HBO is producing a TV special on learning differences, by young people, for young people, that will discuss learning disabilities from the vantage point of these children's strengths. It will be a non-traditional showcase for their talents and a celebration of their strengths, gifts and perspectives on learning as a way to inspire other young people - and also to challenge the myths about learning disabilities.

Who Are They Looking For?

The producer is looking for bright, expressive children between 8 and 16 years old who can articulate their experiences and the process of discovering their own voice, and can talk about their own talents and strengths .

How to participate

PARTICIPANTS MUST HAVE PERMISSION OF A PARENT OR GUARDIAN TO BE CONSIDERED. If you know of a child/family who you think might be interested, please have them contact the producer at LDFilm@aol.com to learn more about the project. Interested families should include their child's age, grade, a brief synopsis of the child's learning experiences, special strength(s), and personality. All replies will be kept confidential.

REPLIES MUST BE RECEIVED BY NOVEMBER 6, 2009.