Coda
Copyright © 2013 Stephen Hawley, all rights reserved.
As a code to this, tonight at bedtime, Stuart insisted that he wanted to read "My Sister Alicia May", which is a storybook by Nancy Ling Tupper about a girl who has a sibling with Down syndrome describing her sister and their relationship. Stuart sees himself in the role of Rae-rae, the older sister and told me as much: "Dad, I'm just like Rae-rae, except I'm younger than Alice instead of older."
At bedtime, Stuart said, "Dad, I want to read Alicia Mae because I'll probably live longer than Alice and I want to make sure I remember her." There's a big helping of sentiment in there. We had a lawn party yesterday with a bunch of Stuart's friends and E and I noticed that Alice was being excluded and was starting to act out a little bit, so since some of the kids were inside, we put on The Princess and the Frog and E made a point of letting Stuart know that he shouldn't change it to something else since it was for Alice since she wasn't playing with any friends. I think Stuart took that to heart.
So we read through the book. Stuart likes reading the spoken parts. He wanted a prayer to protect him from bad dreams and then he drifted off to sleep.
Having a Child with Down Syndrome, Part LXXII: Sibling Issues
Copyright © 2013 Stephen Hawley, all rights reserved.
I was tucking Stuart in the other night. He had misbehaved, so he lost bedtime story privileges. As I tucked him in, I told him that I loved him and he was my favorite boy. He started crying - just a few tears that I wiped away. He was rolling over away from me and I said, "hey buddy, what's wrong?" He slowly rolled onto his back and stared up at the ceiling and said, "Dad, I wish Alice didn't have Down syndrome, because everything would be better."
Wow. This is the type of thing that is a signal that the waters are running deep and it will take a little time to figure out what's really going on. I asked why he thinks that. He told me that he really wants someone to play with and that it's not fair because he wants "to play Lego Star Wars, but Alice can't play it and the only other people who can play it are mommy and you and mommy's not very good at video games." It was poignant and honest. I told him that I understood and that it was OK to feel that way, but I didn't think that everything would be better if Alice didn't have Down syndrome: it would just be different. How it would be different is something we can't know. Alice is a very loving little girl and he's lucky how much she loves him. "yeah, but dad! She's a gossip!" I smiled. I asked him what a gossip was. He was confused - he thought being gregarious (Alice is a people person) meant being a gossip. Glad I asked. At any rate, I told Stuart that he was just shy around new people, and that's fine just like Alice likes meeting new people is fine too.
I'm sorry that he feels lonely and can't play with Alice as he'd like to all the time, but we can't always choose that, can we?
Having a Child With Down Syndrome, Part LXXI: Go Stuart
Copyright © 2013 Stephen Hawley, all rights reserved.
Last year, Alice was involved in a number of summer programs. There's one in particular that stood out for her, so much so that she has been asking to go there on nearly a daily basis, and if you averaged it out, it is more than a daily basis. This particular camp is offering a program that is perfect for Alice developmentally and is in her interests. Of course we signed up ASAP. This afternoon we got a call in which we were told that this was the most popular session and that it wouldn't be cost effective to have Alice there considering all the problems she had last year.
There are so many things wrong with this on so many levels. It was given in the sweetest tone which completely masked the message: we don't want your daughter here - because they couldn't say that, but they said that. And since it was a phone call, there's no documentation. E is very upset about this and I'm pretty disgusted and we spent a lot of time talking about this today.
Stuart could easily see that E pretty unhappy. She was crying and Stuart gave her a hug and said, "Don't worry mom. I'll always be here for you."
Later at dinner, we were discussing it more and just to make sure he understood, we quizzed Stuart and he recounted what was going on accurately. We praised him and he insisted that he would always stand up for Alice. Oh, good boy!
Who is this group? That's a surprise.
Right now we're planning on sending them back a note that sums up the conversation and give them every opportunity to do the right thing. If they do, they get praise, and if they don't, I've got a 6-year old who is ready to take them on.
Having a Child with Down Syndrome, Part LXX: Ballet Notes
Copyright © 2013 Stephen Hawley, all rights reserved.
It's spring, so for Alice that means that for the past several months she has been going to rehearsals for ballet. Her local company, Pioneer Valley Ballet, does two large productions each year. In the winter, they do The Nutcracker and in the spring, they do something different. This year, they did "The Little Mermaid" and Alice was cast as a sea turtle. Alice went to the rehearsals in a steady ritual. Mom gets her hair ready and puts it into a bun with a serious armada of bobby pins, while Alice works on some crocodile tears about how much it hurts. C'mon, Alice, you're not fooling anyone - I've seen you drag a brush through your hair like you were hoeing a row. Then she would go to the rehearsals and learn her part.
Alice has a love of the ballet and of theater. For this performance, I was backstage dad and kept myself available for when Alice needed some assistance, but quite honestly, she doesn't need us back stage anymore, and I don't think we should be there. Alice knows the routines and know what needs to be done and is eager to get there. That tells me that it's time to step away.
When Alice walked on stage, I was in the basement watching on a video monitor. She came out and like her previous Nutcracker, hit all her marks and did everything that had been asked of her. I couldn't see enough detail to see if there was any stage acting, but that's OK. She came back full of energy and very happy about being on stage. As an aside, it's clear how many people back stage know Alice and took time to talk to her and encourage her or congratulate her. It's a wonderfully welcoming organization and an outlet that it constructive and valuable for Alice.
Seeing her excelling--and she truly was--made me very proud. If I had been wearing a shirt with buttons, it would need some mending. It's been a pleasure watching Alice growing up doing ballet, from the early days when she was struggling to keep up.
To now, where we go out and celebrate with a nice, late lunch together.
It's nice to see how much she's grown and how far's she's come.
Having a Child with Down Syndrome, Part LXIX: I Suck as a Dad
Copyright © 2013 Stephen Hawley, all rights reserved.
Watch this. Just watch it.
Did you watch it all? That's Ricco VanArragorn (#2) helping Cory Stedman score a goal in a hockey game. Cory, from what I could tell from searching around, was 12 years old when this video was shot and he has Down syndrome. Here's why I suck as a dad: Ricco does all the right things here with apparent patience and calm. He doesn't take the stick and assist Cory. He does nudge him. He just sets Cory up to succeed in his own time and making his own mistakes and gently correcting them.
I try to do this and I know I fail enough that it irks me. I would like to sit with Ricco's parents and find out everything they did to help raise a son who did this job so well and congratulate them. I do celebrate on my successes with Alice, but I also spend a lot of time thinking back on when my resources ran dry - my patience, imagination, kindness - they all were scarce when I needed them. At times like now, I feel like there is little middle ground: wild success or resounding failure. Where's the middle ground?
Still, we're in the process of making some very hard decisions for the future and maybe that's why I shouldn't kick myself and should instead pat myself on the back for using planning, insight, and wisdom to help remove the big bumps in the path so that Alice will be able to walk down it and succeed in her own time.
Ricco - if you ever read this - you're awesome. Cory - nice goal.
Having a Child with Down Syndrome (in Massachusetts), part LXVIII: MCAS
Copyright © 2013 Stephen Hawley, all rights reserved.
This is my first post on this and likely not my last. As part of No Child Left Behind, Massachusetts instituted the MCAS tests. These are tests that are given to students in Massachusetts in grades 3-10 (except grade 9). The grade 10 test is used to determine if you are going to get a high school diploma. 8 years ago, I had a job doing IT, technology administration, and teaching at the smallest public school in the state and it was there that I became familiar with the MCAS test and how the schools deal try to game the system as much as possible. The commonwealth has laws that require districts to improve and to spend resources planning and publishing those plans. The main instrument to measure improvement is performance on the MCAS. Where I was teaching, there were two things that were done to keep out of the spotlight of the state:
- Every student was required to take two specific classes in taking the MCAS. These were classes dedicated to learning how to take the MCAS standardized (one in English, and one in Math, IIRC). Just to emphasize - these were not classes so much in subject matter but in test taking strategy.
- Students who were thought to be underperforming were identified in 7th and 8th grade and the parents were strong-armed to move the kids into the local vocational school.
These two things sound ridiculous--and they were--but this is a small school district. The graduating class was routinely 20 kids. If two kids were having a bad day on test day, then 10% of the class might fail the test, which is bad news for the school. You can see why they try to game the system.
Alice is in 3rd grade and we started talking MCAS last year because she is taking it for the first time this year and without extra prep, she's going to have a rough time this year (and subsequent years). Massachusetts hasn't done well with the MCAS with people with cognitive disabilities (see Tracey Newhart).
Alice as a baby in Tracey Newhart's lap at the MDSC convention
There is an alternative assessment available, which is a portfolio-based assessment. The (former) head of our SPED department noted in a meeting the Massachusetts rarely accepts them. He mentioned a number of the total accepted and I can't recall it, but it was fewer than 10.
So we are trying to move Alice forward in preparing for the disaster that is the MCAS. Fortunately, we have Alice and I have hope and belief in her:
An Interesting Exchange
Alice and Stuart get along pretty well. Their relationship is usually good and certainly fascinating to observe, especially when they have friction.
Last night, Stuart was pushing Alice's buttons and when she had enough she turned to him and said, "Stuart! You a jerk!" and proceeded to list out all the things that she felt insulted about. Stuart fired back that he was not a jerk and before the bickering could get out of hand, I separated them (Alice needed to go brush her teeth and change for bed) and I turned to Stuart and said, "Hey Stuart - you're not a jerk, but sometimes you act like one." And his response was, "yeah, dad, I know."
Having a Child with Down Syndrome, Part LXVII: Independence and Accessibility
Copyright © 2013 Stephen Hawley, all rights reserved.
Alice and I do a lot of things together to help her build independence. Shopping with her is usually a very pleasant experience. At this point she knows the process well enough that we have established a rhythm to getting the groceries. She gets the items on her list and crosses them off on her clipboard. It's worked well and transfers to other aspects of her life. There are some nice fringe benefits, too: Alice is out and active in the community and there are a number of clerks in the store who know Alice by name and understand that she is working when she is in the store. On her list, I always put at least one thing that requires her to stop at a counter and ask for something specific. For example, today she had to ask for "1 pound of light American cheese" at the deli counter. The worker at the counter recognized her, greeter her (not me) and asked her for what she wanted and he also made an effort to listen closely so he could here. The grocery store, Big Y, has been very accommodating and is very accessible to Alice for most things. Some times she needs assistance for things that are too high up, but it's not too bad. I try to keep an eye out for things in her world that are needlessly inaccessible.
For example, Alice and I like to go to Taco Bell for lunch, maybe once a month after shopping. It's a guilty pleasure for both of us and one that we can share since her brother hates tacos (or so he says) and her mother can't stand Taco Bell. She orders her own lunch and then we go to get the drinks and here is the problem:
Alice can reach the ice dispenser in the machine and operates it naturally. She can't, however, operate the soda dispenser. This is because Taco Bell, in it's infinite wisdom, chose to put in a machine that requires two hands to dispense soda. In theory, you can place the cup on the grill and then push the button, but there is no way to align the cup and the distance from the nozzle ensures that soda sprays everywhere or knocks the cup over or both. The traditional dispenser with a lever that activates the nozzle is ideal as you only need one hand for it. This is such a horrible design and it won't get any better.
It's a pity and I'm not sure how to approach it. It's not exactly the kind of thing you can say to the manager and hope to get traction, "hey - like your restaurant, it's nice and clean and my daughter and I like to eat here, but could you replace your soda dispenser with one that she can operate on her own?" Not likely, and asking for help is an option, but it goes against the whole notion of independence, and Alice truly likes doing things on her own (except when she's feeling lazy, but that's a story for another day).
Still, we sit down and she has crunchy tacos and I have soft tacos (she can't have wheat and I can't have corn - we're quite a pair). I like putting on their Fire Sauce and Alice has adopted that too, although today she declared that the sauce was "wicked hot".
You Have a Family Member with Down Syndrome, So Now What? Part 9
We've been trying for some time to build independence in Alice, especially in self-care. It's been a long path and we've had a number of successes. Alice dresses herself daily and manages most of her care in a timely manner. Bathing has been tricky. Alice has trouble getting shampoo for herself and enjoys bath time enough that she would likely stay in the tub for more than an hour. Clearly not acceptable. I've been running her against a timer with moderate success, but her compliance has drifted.
This past week, we made this sign and when she was able to get her hair washed and rinsed in 5 minutes, I marked it with a smiley face and set her to work washing her body. We listed out everything she would need to wash and set the timer. When the timer went off, I checked on her and she had washed her stomach and feet, but not the other things she needed to, so I drew a frowny face. OH. MY. GOD. It was as if I had eviscerated a teddy bear in front of her. It was astounding. I was now the worst person in the universe because she spent the next half hour telling me so.
But you know what? The next bath time she got through as quick as possible just for that smiley face.
Materials
- A piece of paper with bath steps on it
- A dry erase marker
- Tape
- Access to a laminating maching
Instructions
This is so easy. Laminate the paper with the steps on it. Tape it to the bath wall. If you don't have a laminating machine, you can take the paper to most printing or larger office supply places and have it done there.
How to Use
Talk about what needs to be done for a step. Set a reasonable timer for the task (we're using 5 minutes). If the task is completed on time, draw a smiley face. If the task isn't done or is partially done, draw a frowny face or leave it blank. If the tasks are done on time, allow some play time as a reward.
Having a Child with Down Syndrome, Part LXVI: Can’t Wait
Copyright © 2013 Stephen Hawley, all rights reserved.
This is a caption to a picture that Stuart drew for mom. It reads "MOM THEES EZ YOU" and captions a picture of a candle. It makes me somewhat sad on a couple fronts. The first is that Stuart does this for mom all the time. At the time he did this, he hadn't yet done that for me and I was feeling jealous (at the time of this writing, Stuart had left a note for me when I came home from community band that he wanted me to build a wall in front of his door made from cardboard "bricks" (likely so he could smash through it in the morning). I did so - I built a humble but interesting-looking wall. He complained loudly about it at breakfast. I can't win). The second reason is that I'm still waiting for Alice to write these notes.
It's rough. Stuart is far ahead and Alice is far behind in terms of writing skills (spelling, motor control, desire).
I can't wait. I'd gladly take getting dissed.