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


Two for the show

Posted in Down syndrome,health/fitness by stuffsoup on September 17, 2012
I’ve been running again. I got back into it the only way that seems to work for me… with a group. This time though, it isn’t a running group, per se. This time, it is a group of people running for a cause. I’ve never run for a cause before, but if one had the chance to hook me, it would definitely be this one… It is GiGi’s Playhouse Twin Cities, a Down syndrome awareness center that first opened in Chicago, but now will open its doors in the Twin Cities in January 2013!
Running has been interesting to say the least. I’m slow; slower than my previous “normal”. This means that on those long runs, I have time to think…. LOTS of time to think. I’ve joked to several people that I have to look at my long-distance runs as looooong meditations. See, I didn’t know how slow I’d be. I’ve run a couple of marathons before and thought I’d be able to hang with some of the group. But, time after time, after the group starts out on those early morning runs, I very quickly fall behind.
On one of those long runs that started out at 12, crept up to 18, and turned out to be 18.6 miles, I was struck by some of the similarities of my running with my daughter’s life. My daughter has Down syndrome (which is why the GiGi’s Playhouse coming to town is such a big deal for me) and I’m sure she is aware that her “normal” is slower than others. But, she gets out and does what she can every day. She even encourages her classmates, her brother, and sometimes even passersby by letting them know that they are doing a “good job!” She’ll give them a big thumbs up and a smile for doing things that she might not be able to do while she is busy working on things that she can do so she can improve. She means it too, that encouragement. She is truly impressed and happy for the people she is rooting for. She shows up. She does so as cheerfully as she can on any given day; and most days that’s pretty cheerful. But, even on those days that doing the work is hard, really hard, she is there trying; sometimes slowly, but trying.
I hope to be the same as her in that. I’m showing up, as cheerfully as I can, and I’m trying. I’ll go the “wrong way” around a lake so that I have a chance to encourage the other runners from our group (since I’d never see them if I went the same way around as them). I’ve enjoyed the passersby, particularly around the lakes. I’ve encouraged them and been encouraged by them. I keep showing up, keep putting in the work, and keep being ok where I am while also being very happy for the other runners as they pass me by.
The way I’d like to see it is that my daughter and I, well, we may not be fast, but we have big hearts and we’re tough enough to put in the work even if it takes us longer. We love to support and encourage others along their path and we love to get support and encouragement from those people who cross our paths. So, there’s the pitch… would you help support my daughter and I by donating to GiGi’s Playhouse Twin Cities? Just go to http://tinyurl.com/GiGisTwinCities and click the donate button. Down syndrome is basically 3 copies of the 21st chromosome, so you could donate $21.21 and have 21 friends do the same. 🙂 The marathon is 21 days away and whatever you can do would be appreciated! Though, if you aren’t moved to donate or can’t right now, I totally understand. A smile, a thumbs up, a “good job”, or a kind word will take my daughter and I (and likely anyone that crosses your path) a long way as well. However it all goes, we are showing up!

Happy WDSD

Posted in Down syndrome by stuffsoup on March 21, 2011

Today is World Down Syndrome Day. I had a great time celebrating by taking a book that I wrote about my daughter into her classroom to read it to her classmates and teachers. It is a simple book with lots of pictures that I wrote when she was 4.

The kids were so sweet as they sat to listen. I read about things that she had been through and how some things are different for her and how some things are very much the same. The kids almost unanimously liked all the things my daughter liked in the book. It was fun to share.

At the end, I asked if there were any questions and nearly all of the questions were about how I had put the book together. One boy even wanted to know if I had drawn the pictures (they were all photos). Down syndrome was clearly a secondary thing. I had been told by another mom that this was how it went for her too so I actually wasn’t surprised. I think kids just like the idea of putting a book together to tell a story.

In the book, I explain somewhat what Down syndrome is (at a young kid level). Even so, there was another question. A boy asked at the end, “So, what’s Down syndrome?”. I love that her classmates don’t have this “label” for her and I also love that today, they learned the term. Kids are smart and I think it is good for them to have words for their observations.

I tried to express to the boy that it is kind of hard to explain exactly what Down syndrome is and I asked him how he would explain to someone what “brown hair” is, what it means to be born with brown hair. He kind of chuckled and seemed to realize what a task that would be. I just briefly mentioned that Down syndrome leads to some of the characteristics that I had previously talked about such as that she has to work her muscles really hard (hypotonia), she has to practice things more, and she might look a little different.

My daughter’s teacher then had a great question for the class too. She asked if anyone learned something new or found out something interesting that they’d like to share. And, the class was back to the pictures as a girl said that she thought “It was very interesting to see, um, the picture of her at the beach. It was a very cute picture.”.

I was glad that I had brought in a spare copy of the book with the pages all loose and I passed the pages out and the kids all got a chance to look at the pictures more closely. They were great at sharing and asking for a page to be passed that they hadn’t seen and they made such sweet comments about what they saw. My daughter was even in the mix with her classmates passing pictures of herself and looking at them again.

I am grateful to feel like my daughter is in a good place. She’s just one of the kids in her class. I hope you had a great World Down Syndrome Day too.

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. 😉

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

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.

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.

Giddy Up

Posted in Down syndrome by stuffsoup on April 10, 2010

Today I was giddy. For hours. Content, happy, engaged, excited, just… giddy. Today I attended the 2010 Regional Conference put on by the Down Syndrome Association of Minnesota (dsamn.org). I’ve gone every year it has been available since my daughter was born.

There are so many things that I love about it.

Firstly, it is held on a college campus with bonus free parking and doesn’t a college campus just feel like a place of learning and growing and experiencing all that life is? Just inside the doors starts the expo part and I LOVE expos. So many booths of people sharing information and excitement about their product or service… along with a trinket or a bit of candy for good measure. Then, to the registration table to see the smiling volunteers who seem so happy to see that you have arrived to partake in all that they have put together. Then, the keynote and other speakers and sessions where there is always a nugget of good information. I truly believe that everyone has a story and can teach us something or remind us of something we used to know. Finally, there is all of the participants… all of us brought together for the day because we all know someone with Down syndrome. Everyone on a part of this journey; be it a parent, grandparent, caregiver, sibling, teacher, therapist, or self advocate. Again, so many stories and so much humanity. I love that I know so many of these great people and I enjoyed meeting even more.

To me, any day spent learning – growing, living, experiencing new things, connecting, being reinvigorated, participating in something good – is a good day.

Be Still My Heart

Posted in Down syndrome,parenting by stuffsoup on March 23, 2010

My daughter had her riding helmet and cowboy boots on (even though she had clearly forgotten how to walk in the boots over the winter with their extra heel). My son had his pieced-together outfit with lots of camouflage, pink boots, green scarf, and purple mittens and he was ready to be a good (and warm) spectator. I had my new (to me) digital camera at the ready to hopefully get better shots in the low light. Everyone was excited to start the spring session of We Can Ride, a wonderful program for therapeutic horseback riding. The horses, the volunteers, everyone was ready for riders and the riders were ready too.

First, the horses were lead by the riders (with the volunteers’ assistance) around the arena for a warm up, then one by one, with big smiles, they mounted. My daughter has been riding horses there since she turned 2 years old and she loves it. They did the usual riding around the arena doing stretches and I snapped pictures whenever my daughter was close enough to see well from the gate where her brother and I watched. I could see that both my daughter and the horse she was riding were being a bit feisty. The horse stopping in his tracks periodically and my daughter pulling some at the reins (even though they are not yet attached in a way that she has control of the horse – it is just for practice at this point). Both were a bit resistant to all the instructions they were being given – both were just trying to settle into the new session.

At one point, the instructor called for the class to line up at the far end of the arena for a game of red light, green light. My daughter had just passed that end of the arena and so instead of doing another loop, the volunteers decided to take her back. The horse was not happy with this decision and resisted the turn around. They pushed for him to join the other horses already lining up. Then, the horse decided to protest in the strongest way a horse has to show his disagreement. He fired his head back and lifted his front hooves off the ground and as my daughter slipped off the left flank of that horse, my breath caught in my throat. It looked as though the volunteer who was on that side was going to catch her, but she said later that she just couldn’t get ahold and as my daughter fell to the ground, I gasped.

The next thing I saw made my heart stop right where it was… the hind hooves raised… and they were coming down right at my daughter. A million things raced through my mind, but the loudest of them all was just NOOOOOOOO! I dropped my camera and fought my way through the gate and into the arena to get my baby girl. I was so afraid. It was the scariest I have ever felt in her whole life. As I moved toward her, I knew I had to pull it together for her. By the time she reached me from the other end of the arena she was wailing, but she was alive and she hadn’t been trampled. We sat in a chair just outside of the arena and I held her and I kissed her and I tried to comfort her the best I could. I asked her if she was ok, I asked if she was hurting anywhere, I told her things like “I bet that was scary, huh?” and “boy, that (horse) sure wasn’t listening very well, was he?”. She WAS scared and she WAS hurt and in hindsight, she was also angry. So, I just held her some more.

The volunteer who had the near catch came over and said to my daughter something like, “that horse, it was like he was dancing there, huh?” My daughter paused in her grief and I knew I had my opportunity. I said to her that it would be absolutely ok to tell that horse, “no more dancing, just walking today”. And, she looked at me and she said, “yeah”. Yeah. She made it. She breathed and I could exhale. When asked if she wanted to go ride again she said, “yeah” and she went over to the lift (even though she was being asked to use the block for mounting) and she rose (literally and figuratively) to get back on that horse. The instructor told me later that she also made sure to say to the horse before she got back on, “no more dancing!”. As she walked on, she smiled and said “that’s better” and so I guess we all will be.

I asked if a horse had ever bucked anyone off before, because it really seemed like such an anomaly to me. One volunteer said “yeah” but another said “oh, never, not since I’ve been here”. I can’t say I won’t be holding my breath just a little bit next week. These are animals after all and I was just reminded of how powerful they can be.  But, it really is a great program and I have to trust the process. So, if you have a few minutes and would like to check out the We Can Ride program, here is a link to a video about them – my daughter is in the video too. 🙂 http://www.youtube.com/watch?v=g7F0654CGcM

3/21

Posted in Down syndrome by stuffsoup on March 21, 2010

Today is World Down Syndrome day.

Down syndrome is characterized by a person having all or a part of an additional 21st chromosome, thus having 3 copies instead of 2. It is also known as trisomy 21. Thus, the significance of the date 3/21. So, today is a day for people all around the world to pause and reflect on Down syndrome and how it has touched their lives and perhaps even raise awareness of what Down syndrome is and what it is not.

Down syndrome is not scary once you know more about it. It is not contagious as some children have worried. It does not necessarily mean that there will be bigger hardships in health than for a typical child. It does not mean that a child can’t learn or grow or live a happy, productive life.

Down syndrome is a relatively common genetic condition affecting approximately 1 in 800 births. It is characterized by certain physical features and thusly it is more visible. It does affect learning and development but not necessarily in such a profound way as was once thought.

Down syndrome touched my life just moments after I kissed the forehead of my newly born first child. I felt scared then, nervous, unsure, but also determined. I am forever grateful to the friends who reached me with books and information so I could know more and do more. I have learned so much about children, about development, about things most parents take for granted, about patience, about letting things go, about fighting for things worth fighting for, about life. I have found amazing people who are also on this journey and amazing people who are not, but who are accepting in a way that makes my heart full.

And, while I still worry sometimes and cry sometimes and ache sometimes. Usually the worry, the tears, and the aching is because of what someone else has done to my child, not what my child has done. There are definitely challenges (some bigger than others) in helping her reach her potential, but I love her so much and I am so proud of how far she has already come. I know there are more great things in store for her and I can hardly wait to be there for them.

So, happy Down syndrome day everyone. And, if you know someone touched by Down syndrome, feel free to wish them a happy Down syndrome day too.