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).


  • 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


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).


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.



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:


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.




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

Copyright © 2014 Stephen Hawley, all rights reserved.


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.



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.



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.


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”