Tag Archives: trisomy 21

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”

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

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.

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

This Morning’s Greeting

Alice has a habit of just barging into our room and her brother’s room when the door is closed.  We’re working on this.  This morning, I was getting ready to get into the shower, but I was still dressed as Alice started opening the door.

“Knock, Alice.  Knock.  We knock before we come in.”

Alice stops and with the door cracked open, knocks. “Hello…?”

“Yes Alice, what is it?”

At this point it’s almost like Les Nessman insisting that people knock on his invisible door, but we learn by practicing.

“Can I come in?”

“Yes Alice, you can come in.”

Good morning daddy! How was your sleep?”

“OK, but I feel very tired. It snowed last night. Have you looked at it yet?”

“Yes. It’s fabbalous.”

And that was my greeting this morning.

Prosody

Copyright © 2014 Stephen Hawley, all rights reserved.

Prosody is the rhythm and musicality of speech.  It’s a fascinating feature of human communication and more pronounced in some languages (especially tonal ones) than others.  There is always concern about Alice’s speech.  She mispronounces all the time – sometimes mechanically (e.g., she lacks the muscle tone to make a particular sound accurately) or structurally (swapping in one phoneme for another).  Prosody can be an issue with some people with Down syndrome (it is particularly an issue with people who are on the Autism Spectrum), but let me tell you it is not an issue with Alice.

While her singing is decidedly off-key, her speech can be remarkably consistent.  When she greets me in the morning, she sings a song.  It’s struck me so much, that I transcribed it:

song

 

And that is a simple thing that brings me great joy.

Nicknames

Alice has been making up nicknames for me.  I don’t know why – probably just because it’s silly.  She started calling me Daddy Bunk.  Can’t explain that. Then she started calling me Daddy Cellphone.  OK – guilty as charged, I use my cellph–wait.  See, here’s the problem with Down syndrome.  Alice often has very interesting things to say but we don’t always understand her and have to ask her to repeat herself 3 or 4 times (certainly frustrating for everyone). She was actually calling me Daddy Stefan (which is close enough to Stephen and she probably picked that up from a princess movie).  Too late – I was already calling her Alice Cellphone right back.  So now at unpredictable times you’ll hear exchanges like this:

“Let’s go, Alice.”

“OK, Daddy BUNK

“OK, Alice CELLPHONE”

Injustice

When Alice is confronted with what she believes is injustice, she will decry it and assertively tell you “I call the police!!” (with that many exclamation marks). Unfortunately, injustice takes many forms, including (but not limited to): bath time, no dessert, end of TV for the day, having to spend time with me, her brother acting like a noodle, etc.  My typical response to her is “Go right ahead. What do you think the police will do when they find out that you need a bath and we asked you to take one?”

Two days ago, she was in the basement watching a movie and when the action got rough for the heroes, I heard “I CALL THE POLICE!!” and then a few minutes later she started dialing random numbers on the phone.

Well, that backfired.

Having a Child with Down Syndrome, Part LXXI: She’s a Tween

Copyright © 2014 Stephen Hawley, all rights reserved.

Alice and I have a standard lunch date: Taco Bell.  It’s stupid and unhealthy, but it’s a once in a while thing and for her, a means of developing independence in an environment that is conducive.  She orders her own food and helps set up the table.  I’ve talked about this before and have been talking with the management to try and help make the restaurant more accessible.

Today, while we were eating, Alice put her food down and smiled and waved.  I raised and eyebrow and looked over in the direction that she was looking.  There were two men at a nearby table eating lunch.  They both appeared to be construction or carpentry workers.  Alice said, “That’s my husband.” This triggers all sorts of warnings in my head.  Alice is very trusting of other people.  She assumes the best and to date has pretty much gotten the best from people she has encountered.  This is terrific – it says a lot for the quality of people in this area, but she has no anxiety whatsoever about talking to other people and telling them all of our business.  No filtering at all.  I’ve been trying to remind her – she knows the rule and can recite it – but it doesn’t seem to help.  People are just too fascinating for her.  To a certain extent, I understand.  As a young child, I was a very out-going person and enjoyed meeting new people, but somewhere along the line, I outgrew that.

I tried.  I reminded her of our rule for talking to strangers.  I asked her if she knew him.  “Yes.” “OK,” I responded, “what’s his name?” Without missing a beat, “Bennett.”  I reminded her of the rule and we went on with our meal.  After the man in question finished and got up to go, Alice accosted him, “Scuse me. Hi, I’m Alice and this is my daddy.  Scuse me – what’s your name?” “Brian.” HA!  See! I knew you didn’t know his name!  I explained to him what had happened and that Alice had decided that he was going to be her husband and apologized.  He took it with a smile and said it was alright.  Alice interjected and said a big stream of things (a lot I missed) but asserted that she would see him Sunday.  He smiled and said goodbye and gave me a solid friendly pat on the back on his way out.

I don’t even know what to make of it except that I guess Alice is a tween now.

For those of you keeping notes, puberty arrives on the same time schedule for kids with Down syndrome as it does for the general population.

Give me strength.

Having a Child with Down Syndrome, Part LXX: Learning Both In and Out of the Classroom

Copyright © 2013 Stephen Hawley, all rights reserved.

Last night, I sat down and guided Alice through her homework.  This can be a challenge because assignments come home without expectations of how the assignment should be done or to what extent.  Alice had some spelling words to do that were marked “3 x”, so I had her rote copy the word from an exemplar of each word.  She did well – she had trouble on the word ‘hundred’, but I expected her to have trouble.  All the other words were between three and 5 letters.  Here’s Alice working on it:

She did a good job with the eraser and was clearly working hard to do the handwriting.

Stuart had reported that he felt that some kids weren’t treating Alice well on the playground (his class and hers share recess time), so I offered to come to his class and read one of his favorite books, “My Sister Alicia May” by Nancy Tupper Ling, with his help.  I cleared it with the teacher and then Stuart and I talked about how he wanted it to work.  He wanted to sit next to me and help read (I could tell he was looking forward to reading, “Hiya, stinky butt!” as loudly as possible) I also asked if he wanted to bring in some old pictures of Alice.  He picked some from when he was a newborn and Alice was meeting him for the first time:

Gazing Lovingly

among others, including a picture of Alice when she was an infant, because it reminded him of one of the pictures in Alicia May:

DSC00024_7After going through the pictures, I asked them questions about how they thought Alice was different and the class gave some pretty good observations (her speech, her walking, her orthotics).  Stuart pointed out that she’s different because “she has Down syndrome and she had a stroke”.  I asked if anyone knew what it meant to have Down syndrome and they didn’t, so I went to the DNA explanation.  Some kids had heard of DNA, but didn’t understand it so I used my chapter book metaphor – every cell in our body has a book in it that describes how we’re built.  Our books have 23 chapters in them and each chapter has two parts: a beginning and an end.  Then I explained that Alice’s book is different in chapter 21.  Instead of two parts, it has three: a beginning, a middle, and an end, but even though that chapter is different, Alice is more like all of us than different.  She walks, talks, reads, and has feelings just like all of us.  Stuart and I fielded open questions from the kids.  My favorite of the set was “why does Alice give such gentle high fives?”

It appeared that the questions and their attention were waning, so I thanked them for letting me come into their classroom and share with them, and with prompting, they thanked me.  Stuart gave me a big hug and a kiss.  His teacher expected that there would be further questions and asked me if I would be willing to come back or answer them if they were sent home. Of course.

And now you see how I’ve become an advocate and how I’ve tried to create a classroom full of tiny advocates today.