Stuffsoup – a little blog with a lot of "stuff"


Where never is heard, a discouraging word

Posted in parenting by stuffsoup on March 12, 2011

It has to come, I guess. The day a peer says something mean. Why does it always seem to be the girls?? I was surprised though because it wasn’t my kid coming to me to say, “Johnny called me a name.” or whatever. I was privy to the conversation between two girls from my daughter’s Spanish class as they talked while preparing to leave for the day. Girl 1 says to girl 2, “They said you are mean… oh, but I don’t think so. That’s just what they said.”

I have no good words to describe the look on girl 2’s face. It was a combination of shock, sadness, anger, hurt, and a glimmer of just wanting to flee.

I took it as an opportunity to “practice” what I planned to tell my kids when this day came for them. I’ve never bought the “sticks and stones” theory. So I tried something else. I told both of the girls that just because someone says something, that doesn’t make it true and they do NOT have to choose to give it even a second thought.

I asked the girls what they would say if someone told them that the sky was purple. They looked at me confused so I offered that they might think that the person was just wrong and that the whole idea was silly.

I wanted them to see the word “mean” as wrong and just plain silly. Please, please, please girls, don’t give it a second thought because it is as wrong as saying the sky is always purple.

If you know something is just plain wrong, you don’t have to let it in. Water off a duck and all that. I hope girl 2 lets it go and isn’t bothered and I hope my kids will let it go when it is their turn. It is hard though. I think I prefer the “if you haven’t got anything nice to say, don’t say anything at all” plan.

100 books, good reading or road?

Posted in parenting by stuffsoup on March 2, 2011

So, the project for “I like to read” month has come to a conclusion. My kids and I set out to read 100 books in the month of February. It went really well. I didn’t write down every book we read, but I did write down at least 100. I’m actually glad to have a number (I’m a geek, I like numbers) for how much we read. I wouldn’t have guessed quite that much, but it is good to  know that we’re getting in some good stuff.

Having so many fun books (old and new) around got pretty interesting too. The kids decided to make a “road” out of the books for monster trucks to drive on. The “road” got a bit rough on the “mountain” (otherwise known as the stairs) and was quite long, going into each of their bedrooms.

I liked how creative (and careful, since that’s a big rule) they were with the books as “material”. I also liked reading so many different books and spending time reviewing the coins and the math involved in the coin count.

It was a fun project to do and we got to a lot of fun books… from simple ones like “Hello, Puppy” to more lengthy tomes like “Cars and Trucks and Things That Go”.

We’re still working on what we’d like to do with our 100 coins. The brainstorming session involved dolls, puppies, mailboxes, and more.

Did you get some reading done last month? What would you do with 100 coins?

Cold toes, warm heart

Posted in Down syndrome,parenting by stuffsoup on February 10, 2011

My daughter has taken to climbing into bed with me between 5:00 – 5:30 in the morning. There are just a couple of things that make this less than optimal for me. First, I am not a morning person and second, my daughter is not always the easiest person to share a bed with so usually there will be no more sleep for me once she is in the “big bed”.

The other morning, she climbed in and cuddled up like she often does. This time, she pulled my hand up underneath her chin like she was pulling up her blanket, so the palm of my hand rested on the soft, warm skin at the collar of her button-down pajama shirt. Suddenly, she felt small again.

She was small as a baby; born prematurely, as babies with Down syndrome are at greater risk to do. I used to “measure” her with my hand back then and nearly everything on her was smaller than my hand.

That morning in bed, her chest felt as small as my flattened hand. It got me thinking about her heart. That little defect she still has and the one she finally outgrew. [Nearly half of babies with Down syndrome are born with heart defects.] I even thought of the newly famous kid in the Super Bowl commercial who played Darth Vader. He has bigger heart issues than most of the kids I know with Down syndrome.

I felt glad that we were not lying in a hospital bed together, which we have done for other issues. I was glad that we had never had to go through open heart surgery as others had. I was grateful for how soft and warm and cuddly she felt and how sweet the moment was.

Then, she kicked me with her cold, little toes as she rolled over in her sleep. 😉

I like to read

Posted in parenting by stuffsoup on February 1, 2011

Just in time for I-like-to-read month, my son suggested that we should read one hundred books. One hundred is a favorite number of his right now and he uses it basically to mean a lot. What he was trying to do at the time was delay bedtime, but what he actually did was inspired me to keep track of the books we read, at least for awhile.

At first I thought we could do a summer reading list of 100 books, but then when I saw the note from my daughter’s teacher saying that February is I-like-to-read month, that decided it. We’d read 100 books in February.

I got out a container to fill with 100 coins and labeled it “100 books” and I got out a sheet of paper since I thought it might be fun to keep track of the titles too. And so it began this morning, even before I told my kids about it. We read 3 books before we even came down the stairs. More were requested, but I was hungry for breakfast and our bodies need food too.

The kids saw the container on the counter and we put in 3 coins and listed the books we read; Who’s Behind the Door? At the Zoo by Michael Salmon, My Little Pony The Thanksgiving Gift by Meg Haston (which had been selected by my son at a book fair last week to give to his sister because he thought she would “love it” — who could say no to that!), and Fancy Nancy Explorer Extraordinaire! by Jane O’Connor and Robin Preiss Glasser (picked out by me at said book fair; our first Fancy Nancy book, which is quickly becoming one of my favorites because of the fun and fancy vocabulary).

Speaking of the book fair, it was a huge hit. It was put on by my daughter’s school in conjunction with their Winter Festival/huge party. They charged 50 cents or a dollar per book and all proceeds went to charity. I also picked up a couple of games including one called Zingo which my son has played or wanted to play at least “one hundred” times a day since we got it. Totally worth it. I thank whoever donated the books and games to the school.

And so, we shall continue our month of (at least) one hundred books. I think something fun might be done at the end of the month with the coins we collect in our 100-books container. I guess we’ll end up with somewhere between $1 and $25. Maybe a library book sale is coming up. Anyway, will you join us in showing how you like to read too?

First iPad post

Posted in Down syndrome,parenting by stuffsoup on January 31, 2011

Fghghggryhtnhtnhtbgbgfb

Wow. So I just now saw this (3 days after originally posting). I worried that it had actually posted when I was playing with it and apparently I was right to worry. I quickly forgot about the whole post as I left the speech therapist’s office though and hadn’t given it another thought. You see, the only place during my regular week that I have access to wifi is at my daughter’s speech therapist’s office. So, everything written here after the gibberish was written from my home computer.

I think I am getting ahead of myself though. This post, originally, was going to be the story of how I got an iPad as I feel like I have been telling this story, to varying degrees, quite a bit. So, here’s (basically) how it happened…

I had seen many posts, and particularly this one, about how great the iPad is for kids (particularly with special needs). The video from the article with the boy drawing letters was really the clincher for me… I really, really, really wanted one of these things for my daughter. It almost haunted me. She was working on writing letters. Working really hard. I didn’t want that work to get stale. I wanted her to keep working. I was sure the iPad could help keep it fun. Plus, how many other learning games could there be. So much to learn AND she could really use more computer time (I was told that in confidence by someone that works with her). It all seemed very important. Apart from all of that for her, how fun might it be for me — I have not been what one might call an early adapter for technology. This could be kind of exciting even if not really very early.

But, alas, the spending freeze was on (still). No work, no money, no iPad.

I admit, I did buy a raffle ticket in the fall like the woman in the article, but I didn’t win. I was kind of shocked actually as I fancy myself quite lucky. 😉 Anyway, when my mom asked me what I wanted for my birthday, I joked that I wanted an iPad for my daughter. When my mom asked what I might want for Christmas, I again joked that I wanted an iPad for my daughter. I also mentioned other little things that would be good for the kids like a mini muffin pan to make them mini muffins. My mom asked if there wasn’t anything that I wanted for ME. The question gave me pause. The answer too. No, there wasn’t really anything that I wanted just for me, not really.

On Christmas day (I’m glad my family has been flexible on this), we were at my parents’ house opening presents and I was helping the kids (who had piles and piles :)). I eventually got to a nice sized box from my parents (bigger than a bread box) for me at just about the time my brother got to a “much bigger than a bread box” package. My brother guessed his (and was right). I opened mine and it was filled with lovely little things including the mini muffin pan and I was feeling quite warm and fuzzy and then I got to the bottom of the box where there was another wrapped gift. I didn’t think much of it and started unwrapping. I don’t know how far into the unwrapping process I got when I saw it. The logo. The letters. An iPad!

I guess I did what any person who has been holding their breath about something that felt so off limits yet so important. I burst into tears. Really. A lot of tears. I think I actually started to freak my family out. I just couldn’t believe it. I had an iPad. And, an amazing amount of gratitude to my mom, my parents, for “hearing” how important this was to me even though I tried to keep it light. I cried again the next day for anyone who doesn’t have their parents around anymore to have these amazing moments. (Note: Go hug your parents if you can!)

I touched the iPad’s smooth, cool surface and was entranced. I couldn’t wait to do something with it. It was more than 2 weeks before I could really do anything though. My poor dh had to update everything on my main machine… operating system, iTunes, what-have-you. Then, I had to wait to find wifi which thankfully I can access at my daughter’s speech therapist’s office at least. So, while she is in doing oral-motor exercises, I am searching for free apps like Talking Tom and iWrite, that can help her in any way (along with two (so far) that are fun for me too).

The gibberish at the top of this post is because as I was trying to write on the iPad, the cursor would move, but you couldn’t see any of the letters. When I’d preview the post, the type would be there and apparently, when you post… the type is also there. So, at least for now, the iPad really is more for my daughter (and son who adores it as well) and I love watching them navigate it and the games and draw letters and spell and play matching games and learn. Technology will always be there for them and I am glad they are learning what they can. I am also humbled to have such generous parents. Thanks again, mom.

Sometimes the sibs have it

Posted in Down syndrome,parenting by stuffsoup on January 24, 2011

I have been asked what I think it might be like to be the sibling of a child with special needs. There are not only groups for the parents of children with special needs, there are also groups for siblings of children with special needs; so, it must be somehow different, right?

I think that some of the things these sib groups talk about is how sometimes it is hard to just be mad at your sibling without feeling guilty or how so much attention is diverted to the child that seems to need it most. Perhaps one day my son will have these dilemmas too, though I hope he knows it is ok to get mad at his sister and I hope he feels how much I love him too (and to be quite honest, he pulls his own attention quite often).

In the meantime, I can only opine about how I see the life of the sibling. I have to say that as his parent, I am amazed by him. Being the sibling of a child with special needs has actually seemed to bestow some additional awe upon him that he might otherwise not have received. As a parent of a child with special needs, you sometimes become hyper-aware of milestones and developmental stages and the bonus of that for a sibling is that the parent enjoys every, single, little step as they go whish-ing past them and on to the next thing. It is amazing to watch.

So, while I am truly amazed at my daughter as she tackles each next thing on the developmental checklist, I am also aware enough of those things to really be gobsmacked by my son as he keeps checking things off as well. So, at least for now, I’d say the sibling thing is really just great for both of them and I’m so glad they have each other and that I have them.

Hand in hand

Superlative as a whistle

Posted in parenting by stuffsoup on January 8, 2011

It is fascinating to me to watch the minds of my children piece things together. My 3-year-old son seems to be working out how this whole superlative thing works by trying out -est on the end of things he knows are somehow different, but he is unsure in what way. For example, he was putting things in a line (as he is wont to do) and as he was counting out “first, second…”, he only paused a split second before he said “three-est”. And, since he is the three-est kid in the house, I thought that sounded pretty good. (Oh, and I did let him know about the word third and fourth, etc.)

In the same fashion as kids tend to put -ed on the end of the past tense of any verb (even go), he also thought he’d try -est on front and back. In this, he was correctly using his newfound (and new) words, frontest and backest. This got me thinking about the whole phrase “furthest to the front (or back)”. I mean, really, why can’t we just say frontest and backest. I think I like that construct better, seems cleaner, even if it at first sounds funny.

My 5-year-old daughter on the other hand is working on similes. Her most favorite (or favoritest, as my son will no doubt stumble upon very soon) started out when I told her about “clean as a whistle”. Well, now everything is anything “as a whistle”… skin that’s soft as a whistle, funny as a whistle, and even I love you as a whistle. I just had no idea how very versatile whistles were, apparently. Again, I promise, I am providing some correction to this (and boy, have I rediscovered how very many similes there are for very many things).

I must say though that I am also enjoying the errors for their humor value. I just think they are the funniest as a whistle.

When worry comes

Posted in Down syndrome,parenting by stuffsoup on December 12, 2010

I don’t really consider myself much of a worrier. I am more of a glass-is-half-full, it’ll-all-work-out kind of gal. To the point that my dh has asked me repeatedly what color the sky is in my world. (I always assure him it is very rosy and that the skies are a clear, clear blue.)

But, sometimes an overactive imagination or something that is a real unknown to me will get me… and I can worry. Like yesterday, I was worried about my daughter. Her education. Her opportunities. Her progress. You see, we have a meeting with nearly a dozen school people (teachers, therapists, etc.) on Monday to discuss, well, everything. Or at least it was starting to feel like everything.

When your child is on an IEP (individualized education plan), which basically means that they are receiving special education services; every 3 years they test, evaluate, observe, and analyze the child to determine placement, continuation of services (or not), etc., etc., etc. and that time is upon us.

It sure seems that there is more known about a child with special needs than nearly any typical child. They are tested, tracked, and evaluated nearly constantly. And, to a certain degree, that has to be done to know how to help them continue to learn and really I’m all for more information rather than less. I think I’d like to know EVERYTHING if it were actually possible (yes, even the date of my own death… morbid, I know).

So, it is probably the not-knowing, what-if part that gives me pause. What if she is doing so well that she could lose services? and scarier than that… what if she’s not? She’s lost service time already and I’m glad because that means she’s doing well and I’m not glad because that means she’s not getting as much help. It feels like a weird place and yesterday was like that. I just had to take a deep breath (ok, maybe a few) and in the spirit of full disclosure, shed just a couple of tears — which isn’t so unusual for me, I guess, and talk to someone else who’s been there, also not so unusual for me since I find other perspectives helpful and connections reassuring.

Now to adopt my theme song for the weekend. Que sera, sera… whatever will be, will be. Since, however it goes on Monday, it’ll all work out… with glasses half-full.

When did we stop letting kids win?

Posted in parenting by stuffsoup on August 5, 2010

Two boys raced frantically toward the top of the stairs that I happened to be climbing. Their mom was lagging behind. One of the boys grabbed for the railing on the top just barely edging out the second boy and he shouted with glee, “I win!”. “Awww,” lamented the second boy.

There was an age difference between these boys. I am not sure how much. But, it was the older boy who won. I wasn’t struck by the competitive nature of these (most likely) brothers, or even the rambunctious nature of their race which was taking place indoors. I was however struck by what came after the mom reached the top of the stairs as well. As the first boy smiled and the second boy was plotting his next race, the mom leveled them both by saying, “You didn’t win.”

What?!?

Then she sort of shifted it around to say that each of the boys had won. Ahh, now I see… political correctness. As I was now passing this group, I could see the wheels turning in each of the boys heads. What had they just learned, I wondered. Here’s what their faces seemed to say to me…

The first boy was deflated and seemed to be wondering why anyone should strive at all. What’s the point? We all win, right? Why work so hard at it?

The second boy seemed way less satisfied than one might think after being declared a “winner” as well. Seems he had no reason to strive harder either and he knows deep down that this “compliment” rings hollow at best. Did he now wonder about other compliments he had received? Were these false as well? Maybe that art project he had done wasn’t so great after all.

It is hard to watch the second place “suffer”. But, let’s not sell kids short… they know when they’ve gotten second place. They know they didn’t win and, I think, they are ok with that mostly as long as you are. Better luck next time or a focus on a personal best versus the contest is way more motivating than false claims of victory. And, just think how much sweeter victory will be when it is honestly strived for and earned.

Up, down, and all around

Posted in Down syndrome,parenting by stuffsoup on June 4, 2010

We were at a year-end picnic for one of my daughter’s preschool classes. When my daughter headed for the monkey bars, I headed over to “spot” her. I’m excited that she can do the monkey bars on her own, but at this particular park, the bars seemed to be about 8 feet from the ground. I wanted to be nearby — call me overprotective.

As I approached, I saw another girl from her class standing near her, a classmate that has one more year at preschool. She was saying something to my daughter. It seemed she was inviting her to come to the slide. I stopped in my tracks. I didn’t want to break the moment… a kid not only accepting, but inviting my daughter to join her. It is what every mom of a kid with Down syndrome hopes for, probably even more than parents of a typical child. By then, I was close enough and I could hear this classmate, and what she said to my daughter next almost made me cry. She said, “I’m gonna miss you, Alisa. I’m really gonna miss you next year at preschool.” So simple. So beautiful. My heart warmed and my daughter seemed appropriately touched which was beautiful too. They smiled at each other then parted… one to the slide and one to the monkey bars.

A couple of days later, we were at the playground of what will be my daughter’s school in the fall when she heads to kindergarten. A number of kids participating in an after-school program were also there. Monkey bars being the new favorite thing, my daughter headed over to them, as did a few other girls. Again, the bars were too high off of the ground for my liking so I was nearby. A girl who was in kindergarten there was talking to me about many things including my daughter. At one point, she asked, “Does she get sick?” I must have shown my puzzlement as I said, “uhhhh” because she then tried to clarify, “Did she get sick when she was born?”

What to say? Much of the “advise” swam quickly through my head… “speak to the child’s age level”, “be direct”, “be honest”, “be open”, “don’t give more information than they are asking for”. I inquired, “Are you asking that because she has Down syndrome?” The girl responded that yes, that was why.

I’m not sure of my exact words at that point, but I tried to explain that she was not sick when she was born because having Down syndrome was not “being sick” (without going into common medical complications related to Down syndrome). I tried to explain that Down syndrome is a trait like having brown hair or blue eyes (without going into chromosomes and heredity and chance). I tried to explain that she is a kid, just like her, she just has Down syndrome so some things are a bit different for her (without mentioning that one of the things that can be different is just going to the park).

Whew. That’s not the most fun, but I’m much happier to talk about it than have kids make wild (likely erroneous) speculations. The girl then seemed interested in getting more info about what all my daughter could do and I was happy to focus more on her capabilities. I helped them talk to each other and smiled when the girl asked my daughter if she’d like to go before her on the monkey bars.

It’s hard to explain complexities to a child, but that is what has to be done sometimes. New kids don’t have a whole year (or more) to get to know my daughter like “just another kid” — a kid that they might really miss when they aren’t together. Decisions are sometimes made quickly. We all do it. I often wish I was nearby for all of my daughter’s social exchanges. I could be there for questions, to help it all go smoothly. I want kids (and sometimes grown ups) to see her for her strengths. It really does warm my heart when ultimately they do.

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