Plinth Blog Special Needs Parenting

27Dec/121

Having a Child with Down Syndrome, Part XLIII: Dining with Celiac Disease

Copyright © 2012 Stephen Hawley, all rights reserved.

An open letter to Cracker Barrel.

To whom it may concern,

We have a number of interesting challenges in our family. Not the least of which is our daughter, Alice, who has Down Syndrome and Celiac disease. It can be a challenge, when we're on the road, to find places to eat as she can be very fussy at times about what she will or will not eat. As you can imagine, it can be challenging to explain to her that she can't have certain foods on the menu that she really wants as they have gluten and will make her sick.

Consequently, we make a point of traveling with certain staples that she can eat and provide them to restaurants to augment their offerings so that we can have an enjoyable meal. We like to go to Cracker Barrel because the food pleases our whole family and Cracker Barrel has been amenable to our needs and expectations. We usually bring some gluten-free bread to be made into French toast, which our daughter loves very much.

This past weekend, we stopped for the first time at your location in Wrentham and found that it was unacceptable to do so – quite a surprise to us and to our daughter who had her expectations set. I understand that each restaurant must comply with food handling requirements, but we were surprised to see inconsistent handling from location to location. To the credit of the Wrentham staff—and I cannot stress this enough—they worked very hard to make things right for us.

We would like, in the future, to patronize Cracker Barrel, but can we have a definitive statement as to how we can set our expectations? Can we bring gluten-free bread to be made into French toast? If not, are there consistent gluten-free options available at Cracker Barrel and can we dine there.

I appreciate that it is a challenge to appeal to all diets, but I hope that we can find away to patronize your establishment.

15Dec/120

Having a Child with Down Syndrome, Part XLII: How to be Welcoming

Copyright © 2012 Stephen Hawley, all rights reserved.

 Alice has her thing.  It's ballet.  It's a wonderful thing.  Stuart's thing, if he has one, is hockey.  He did a "learn to skate" program last year and this year he joined a hockey team.  His skating has improved tremendously and he has been enjoying the games.  I've been taking him to the learn to skate program as well so he can improve skating backwards and learn cross-overs.  The LTS program planned a holiday skate party, so I checked to see if we could use one of the hockey sleds for her, which we did:

Stuart took a brief turn pushing her so I could get a picture in.

We finished up and had some snacks.  We were approached by one the head coach/organizer of the LTS program who checked to see if Alice had a good time.  He spoke to me and said that if I was welcome to bring Alice to LTS any time and I could push her in the sled.  I thanked him and let him know that if she didn't have any conflicts, we would do that.  Not long after, one of the organizers also told me the same thing with another piece of information - I would need to register her for the LTS program and that there would be no cost.

Way to go Fitzpatrick Arena!  This is a terrific way to be welcoming to us and ratchets you up in my eyes.

and having Santa there?  That's just the cherry on top.

3Dec/120

Having a Child with Down Syndrome, Part XLI: Vision

Copyright © 2012 Stephen Hawley, all rights reserved.

 

Alice's School Glasses

Alice's School Glasses (specs4us)

Well, it happened.  Alice has gone 9 years without vision correction and we were starting to get the telltale signs that she was having some trouble with her eyes.  It's funny; we had taken her to a local eye doctor, but while he saw a slight astigmatism, he didn't see anything really worth correcting at this point.  Oddly enough, all of Alice's eye appointments were in the morning.  When she had an appointment in the afternoon, the eye doctor triple checked and concluded that, yes, Alice as far-sighted and it was time for glasses.

EDIT: I should note that the reason that the difference between morning and afternoon examinations is likely due to low muscle tone, a common thread in much of Down syndrome.  In the morning, the eye muscles are likely to be working more effectively than later in the day.

This isn't a surprise - 50% of all people with Down syndrome need vision correction in some form.  Being a person who didn't need glasses until 39, I'd hoped that maybe she would have better vision.  Still, Alice loves her new glasses (although she wasn't smiling too much here) and likes to put them on for reading.

There's a problem with glasses, though - and it has everything to do with Down syndrome.  Our friends with Down syndrome tend to have smaller mid-faces and as in Alice's case, have little or no bridge to her nose.  It makes fitting glasses a real challenge.  Of course, at the last couple national DS conventions, I grabbed brochures from Specs4us, a company that makes frames that better fit kids with Down syndrome.  Terrific!  We also got another pair from Miraflex for home.  The Miraflex don't fit as well, but appear to be more durable so are likely to do better at home.  Keeping a pair at school ensures that we don't have to track the glasses.  School glasses stay at school, home glasses at home.
Alice's Home Glasses

Alice's Home Glasses (Miraflex)