Plinth Blog Special Needs Parenting

18Apr/140

More Prosody

Copyright © 2014 Stephen Hawley, all rights reserved.

As I mentioned before, I like listening to the sing-song quality of Alice's voice.  I don't have perfect pitch (or even particularly decent relative pitch), but when I hear something that sounds like music to me, I want to transcribe it.

Here are two stock greetings that Alice uses when she sees me at the end of the day:

worktodayThe key isn't right - I picked that arbitrarily, but that's more or less how I hear it.

 

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14Apr/140

Having a Child with Down Syndrome, Part LXXVI: Making Accomodations

Copyright © 2014 Stephen Hawley, all rights reserved.

Alice loves tacos.  I think it's mostly for the crunchy taco shells (which I can't eat anymore - my body decided somewhere along the lines that corn should put me in bed, curled up like a boiled shrimp). For a several years, we've been going on a weekend date once a month or so.  It's nice alone time and today I thought it would be nice to get Alice's nails painted and run some errands.

13835568083_de588dd738_b Alice and I enjoy Taco Bell.  I can't really say why--call it a guilty pleasure--but the menu can accommodate both of us with a corn taco shell for her and flour soft tacos for me.  It is an exercise in independence.  Alice knows exactly what she wants - "two crunchy tacos and a small drink" and orders it with a small reminder to use her big voice.  The man at the counter heard her first time, which was great.

This time also, we tried out an accommodation to allow her to be more independent in her meal.  Alice likes to put hot sauce (specifically, Taco Bell "Hot Sauce" - not mild, medium, or fire) on her taco, but she can't hold the taco and squeeze out the sauce without either breaking the shell if she holds it in her stroke-affected hand, or losing control of the sauce packet if she holds the shell in her non-affected hand.  What to do?  I found these on Amazon and Alice's taco experience has changed for the better:

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One simple change and now all I have to do is tear open the corner of the packet and she's all set.  Easy-peasy-lemon squeezy!

Now if only she wouldn't pull the emergency cord in the bathroom...

 

 

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26Mar/140

You Have a Family Member With Down Syndrome, So Now What? Part 10

Copyright © 2013 Stephen Hawley, all rights reserved.

One of the best thing about being an observant parent is that if you see a cool piece of parenting in the wild, it's OK to steal the idea, adapt it and throw it at the wall and see if it sticks.  I stole this idea from one of Stuart's friends and adapted it for Alice.  If you throw a birthday party and receive gifts, it is polite to send the requisite thank you cards.  What do you do if your child is semi-literate (and I don't mean that disparagingly. Literacy includes reading and writing and while Alice's reading is pretty good, her writing is poor by comparison).

Materials


  • A camera or your cell phone with a camera
  • A pad of paper and a pen
  • A stamp of "thank you" and a stamp pad
  • Thank you cards

Instructions


While your child is opening gifts, write down the name of the gift giver and what the gift was and a quick note about the card (if any). Have your child hold up the gift and the card and take a picture.  Keep doing this until s/he has gone through all of the gifts and cards.

13365610763_6a7a262efb_oThen gets photo prints of the pictures.  You could do this on your own printer if you like, but many chain pharmacies offer photo prints are doing so at around 12¢ per print in 2014 dollars and that's really cheap.  When you pick up the prints, you can also pick up thank you cards too if you haven't done that.

Then have the child stamp the "thank you" stamp on the back of each photo (pro tip: don't stack the photos and carefully blot them with a paper towel or tissue or the ink with smudge).

IMAG0582

While the ink is drying, have your child write his/her name in each card (or on the back of the photos) and you write the name of the gift giver on the card and/or the photo.  Your list is your tool to help determine which photo goes to which gift giver.  Alice really enjoyed the process and remembered better than I did who gave her some of the gifts, which was a really nice surprise.

Our photos were slightly bigger than the cards, so I taped the photos into the card and wrote the giver's name on the front since the envelopes wouldn't work.

IMAG0583

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24Mar/141

Having a Child with Down Syndrome, Part LXXV: 4th Grade Party & Symptoms of Inclusion Done Right

Copyright © 2014 Stephen Hawley, all rights reserved.

alicechairE planned out a birthday party for Alice where we invited her entire class.  This is actually a rule in her class: if you want to send invitations in to the class, you need to send in invitations for everyone.  In preparation, E got Alice a nice party dress and put her hair into an up-do with little curls.  Alice looked fabulous and was very, very excited. We prepared Alice by helping her learn how to properly greet her friends, politely thanking them for coming.

Nearly her entire class gave a positive RSVP for the party, held at a local movie theater to see Muppets Most Wanted and enjoy pizza, cake and ice cream in their party room.  When the kids started arriving, it was a wonderful spectacle. Alice welcomed everyone warmly, politely, and genuinely and it was reciprocated. They brought gifts (for which Alice thanked them), shed their coats, grabbed cups of popcorn and went into the theater.

The party went well. It was lively with very few problems and a lot of happy kids with full bellies.

grouphugThe kids said their good byes. I had several who said thank you to me as I was cleaning up, and a set of 5 insisted on a group hug with Alice before heading out. It was truly nice to see. Still, the best was yet to come.  We chose to bring the gifts home to open instead of at the party.  In a group this large with Alice's troublesome fine motor, it would have taken a long time - likely more than the kids could stand to wait for and we also didn't want anyone to feel badly if they felt that they had been one-upped.  Alice wasn't happy with this, but that's how we learn.

When we got home, Alice changed and opened her presents.  It was a joy. Alice enjoyed opening the gifts and was saying things like, "this is so sweet!" or "this is beautiful!" or "how nice!" Included in the presents were a number of personal, hand-made cards.  These stand out:

muppetsbriadrawing

When I see drawings like these coupled with the turnout, I know that the kids in Alice's class are her friends because they show it in their words, actions and drawings both inside and outside the classroom. When this treatment moves from school to community, it touches me and makes me believe that her future in school won't be empty.

 

 

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21Mar/140

Having a Child with Down Syndrome, Part LXXIV: She’s 11

Copyright © 2014 Stephen Hawley, all rights reserved.

alice11

Today was Alice's 11th birthday. It's been quite a ride. On the weekend, Alice had been watching some TV in the morning and I politely let her know that she should finish up and get dressed so we could go shopping together.  This flipped a switch on her - she went storming up to her room, locked the door and spent the next hour yelling at me because she wanted to watch TV and she would call the police and she was going shopping with mommy and she was "very angry at me" and so on. I just sat downstairs and caught up on my reading and ignored her. E and Stuart went out on their own errands. Alice was too busy yelling to notice. Finally she came down stairs. "Where's mommy?" "She and Stuart went out like they said." I had her sit down and I explained that I had asked her nicely and she chose to waste an hour of my time and that we were still going shopping and that when we got back and had lunch, I was going to waste  an hour of her time.  She calmed down and went shopping and I reminded her a few times that she still had her consequences when she got home.  Still, she wasn't happy when the rent came due.  I hear that tweens behave this way. I also should point out that while her general demeanor is very happy and pleasant, that she is by no means free of less positive temperament.

Stuart, oddly enough, has decided in his head that he's going to take better care of his sister and spend more time with her.  He's been playing with her, helping her keep on task in self-care, and generally being a good egg. He made several presents for Alice and helped sew her hoodie pajamas and today he decided at school that he was going to set up a "treasure hunt" for her for her gifts and made up clues to point from gift to gift. After her birthday dinner, he hid all her presents with the clues.  I didn't see how this was going to work out, but with some adjustments, it worked quite well and both kids were running around the house, laughing.

Alice tore into her presents and was very happy.  She's in bed, still wound up and still happy.

I think the most telling thing was during dessert.  Stuart said, "I'm very happy to be Alice's brother." And since we point out, gently, when Stuart is being (unfairly) hard on himself (which he does frequently), I felt it best to also point out that he was being quite kind to himself. His response, "Hey, why wouldn't I be?" And bravo to you, my son, that is exactly the right question to ask.

 

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14Mar/141

Having a Child with Down Syndrome, Part LXXIII: It Is a Different Time

Copyright © 2014 Stephen Hawley, all rights reserved.

Tonight was Science Fair. This was a challenge in that we had to help Alice select a project that she would understand as much as possible, would participate in, and which she would enjoy.  We gave her a selection and she picked the question, "Do big seeds grow faster than small seeds?" This was good because she could participate in a lot of the steps: picking seeds, measuring soil, planting them, watering them, etc.  She did a good job, even though I'm sure that she didn't really get a lot beyond the process of taking care of seedlings.

Tonight was the Science Fair and Alice was happy to go and see all her friends and interact with them.

superHighFive

 

I saw classmates of Alice running up to her, honestly happy to see her. I saw friends giving her unsolicited high fives. I saw friends interested in her project.

And this is truly a different time.  36 years ago, in my youth, this kind of open friendship with kids with cognitive disabilities just didn't happen (not to mention that you wouldn't see them in your classroom to start with). This is a tremendously good thing for everyone and it's so nice seeing humanity behaving at its best.

And I'm also seeing it in my son. He's been behaving in a very kind, considerate manner where he honestly wants to do nothing but help his sister. He clearly sees that she has trouble with things and wants to help her out.

Alice is loving it.

So much so that tonight she declared that she was going to marry Stuart.  This lead to a long discussion about how that's very sweet, but brothers and sisters can't get married. Alice decided to be in a contrary mood and said, "Daddy, first, " which counting on her fingers, "CHANGE THE LAW. Second, I marry Stuart." She kept coming back to this cogent argument, but sorry, it doesn't stick.

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1Mar/140

Having A Child With Down Syndrome, Part LXXII: Fluctuating Standards

Copyright © 2014 Stephen Hawley, all rights reserved.

Time vanishes when you're a parent. When you're a parent of a child with special needs, you go into time deficit. So we've had a set of standards that have moved over time. Initially we lived with "In this house, we have the barest trappings of civilization." Over time we've been slowly raising the bar. These days, the mantra is "In this house, we have a modicum of civilization.

Here are a few examples:

Bickering Not OK
Saying 'please' OK
Declaring the meal 'disgusting' Not OK
Doing a 'one-cheek-sneak' OK, but only if you say "excuse me moi"
15Feb/141

Here’s What You Get From Being Considerate

Alice  and I have been doing a lot of shopping at Big Y. If you have read this blog recently, you know that the staff at Big Y has been very patient and accommodating with Alice. This is great and I like to make sure that the management in the store knows it. I made a point of passing on just how good things are to the company management.

027Alice's shopping list has grown to 10 items and you can see that there are a few challenging words. She had no problems reading the list and as usual Alice did a wonderful job. She knew where the items all were and needed only basic support and few redirections to get it done.

I was a crafty parent today because I knew that Big Y had a surprise waiting for Alice today. Earlier in the week, Betti Boggis contacted me directly and asked for a head shot of Alice for a gift they were going to give her.  I made sure that we did the shopping first so that Alice wouldn't be distracted by the surprise. And what a surprise it was.

028 029Raanan and Jeanne gave Alice some balloons, some fun pencils, and a real Big Y employee ID with Alice's picture.

034Alice was so happy!

033

 

While we waited in the checkout line, Alice was giggling and making squee noises and showing her new ID badge to anyone she could. It was a fantastic experience.

 

037

14Feb/140

Valentine’s Day

Copyright © 2014 Stephen Hawley, all rights reserved.

Not every day has been great recently with Alice. In this blog I focus on the successes and the achievements. It helps to think positively. Alice has had a few "accidents" which I suspect were "on purposes" and she has been especially pokey doing self-care for school even though she is perfectly capable of it. A few mornings, I've found that she has crawled back into bed and shut off the lights. Something like that is very easy to deal with in a positive parenting way if you have time, but that is not an option when you have to also get her into snow pants and boots and get to the school bus stop.

valentines

Alice has also had a really stuffy nose and was exhausted by dinner time. That's when E remembered that she needed to do her valentines for school. So the trick is to decide ahead of time what do I think she can do that will succeed and what can we work on for her. So tonight is was fine motor and reading.  I took the valentines and went over the "FROM" labels with a yellow highlighter and then had her write her name 27 times. I carefully counted off the seconds to myself as she did each one - between 15 and 25 seconds each.  Good - this is realistic.

I wrote the names of her students, but had her read them to me and every third one I asked her to spell for me.

15 minutes well-spent.

10Feb/143

An Open Letter to Big Y

To Donald D'Amour

CEO, Big Y Supermarkets

Dear Mr. D'Amour,

I would like to congratulate you on the quality of your staff at the Northampton store.  My family has shopped at Big Y for groceries for the past 13 years, and shopping has been a more or less routine experience until my daughter Alice was born.  You see, Alice won the lottery in terms of special needs.  She has Down syndrome as well as having a heart defect that contributed to her having a stroke within minutes of being born. One thing we are striving to do as parents is to develop her independence as much as possible.  One way I have done this with her is to get her involved in the entire process of shopping.  At this point, we have a routine.  I take her to the store with me and she brings a clipboard and write her a list. She gets those items, puts them in the cart and checks them off.

You might be thinking, "what does this have to do with our staff?" Everything. Absolutely everything. Your staff understands that when Alice is in the store, she's working. They understand that she is doing a job that involves planning, organization, reading, writing, and communication. When I make the list for her (and by the way, it's grown to about 10 items now), I'm very careful to include one or more items that involve having her talk to someone staffing a counter. This is where your staff has been particularly terrific. They are careful to listen and treat her with kindness and respect. At least every other week, I stop by the manager's kiosk and let the manager know who in particular stood out.

This past week, it was Chuck at the butcher counter. He treated her with respect, patience, and kindness. It was very touching to see because in my parent's eye, I could see her doing this on her own as an adult, something I would like but have a hard time imaging on some days.

When I see how well she is treated at the store, it makes it clear to me that Big Y is truly a community store. It is underscored by the rare occasions when I am shopping on my own and at least two people will say, "oh - you don't have any help today?" Good for you.

And besides hiring excellent people, you hire with diversity. It's very easy to put that into words in a mission statement or a corporate mantra on your employment page, but to see it in action makes it clear that you put your money where you mouth is.

Thank you.

Stephen Hawley