Monday, November 24, 2008

Help Wanted

I'm even hesitant to write this. I am compelled only because I really want to know what you think, get advice from you.

Here's the situation and the question that arose from it ...

This morning we went down for breakfast at our hotel in Glasgow. We were a little later than usual because we decided to have a lay in and just take it slow. When we arrived we were seated at a table with a full view of the restaurant. As it was a buffet breakfast, I waited as Joe went up to get the goodies.

Shortly after we tucked into breakfast a family came in, Mom and Dad along with two beautiful daughters and a wee little boy with Down Syndrome. They all looked tired, like they'd had a busy weekend. Watching parents parent is exhausting. They had to have eyes on three kids and still operate as a couple. It's amazing when done right.

The little boy probably hadn't turned one. He was beautiful. And bright. His eyes followed every action at the table. He laughed when his sister made faces, grabbed at a bottle full of juice and charmed the hell out of the waitress. He looked over towards me once and I waved and he smiled. I know I shouldn't say it ... but man, can these kids smile.

Afterwards when we were upstairs I confessed to Joe. "I wanted to just go and talk to them for a second and tell them that their little boy had a real future ahead of him, that they needed to think about full adulthood with work, with weddings, with worth. That anyone who tells them different is operating on old data and antiquated assumptions."

Joe admitted that he wanted to rush out to the car to get a copy of either 'the R word' or 'In:Difference' to give to them. We talked about what the right thing to do was. Would they have found our intrusion intrusive, would they have welcomed the books? Would our simply noticing and commenting on a personal aspect of their son be offensive?

What should we have done?

What would you have done?

Is even asking offensive?


Heike said...

Tough one. I would probably leave them alone. I smile at people, and if they smile back there may be a "moment" to start talking. Otherwise I leave things. Sometimes we like to go out and just be a family, no disability issues thank you very much.

rickismom said...

Look each couple is different. But if you would say something like:
"I hope you will forgive me for butting in, but I work a lot with adults with disabilities, and I thought you might ...."
-be interested in this book
(better) be pleased to know what I am sure you do already: Your son had a real future ahead of him, ...etc. I wrote a book you might enjoy. Can I present you with a copy?

We get so many of the of the "Oh aren't these kids wonderfull comments", that if you start with an apology, and mention your connection to the club, chances are that you would be well received.

The "secret smile" only works if they have a way of seeing you as one of the club (which the wheelchair does help with, for non-disabled adults, the problem is trickier. But I would think that most parents by far are welcoming of short things, especially as you are not "labeling him"

wendy said...'s a dilemma, isn't it? I think the thing that makes me think you could have approached is that both you and Joe felt such a compulsion. I don't imagine you both feel that 'nudge' at the same moment every time you see a child with Down's Syndrome. I'd take that as little cosmic "suggestion", I think.

Nicki (Andrew's mom) said...

As a mom of a 3.5 year old shining star with DS my first inclination would be to run ovre to their table & do exactly what you had the urge to do. I think 'rickismom' touched on a great way to start out the conversation, as well.

Having said that, though.....being that the child in question was barely a year old it may still be a touchy subject for the parents. Most parents take a fair amount of time to adjust to the idea of their child's diagnosis and it may have still been raw for them. Wording your first few sentances appropriately, as I'm sure you would anyway, is key.

Had that been me and my family at that table I would've wholeheartedly welcomed your words, thoughts and insights. However, I'm in the minority when it comes to dealing with my son's diagnosis. It never phased me and never will. My son is who he is....a shining star....with or without the DS.

Uniqueisfab said...

I'm a mum of a chap with DS who is 20 now.
As a family we've noticed that Aaron being with us when we're out acts as our membership card to a world wide club of other families who are privilaged like us. We often get a smile or a conversation and that happens if the other people have someone with DS with them or not.

As Judith Snow says " Gifts are whatever we are, whatever we do or whatever we have that allows us to create opportunities for ourselves and others to meaningfully interact and do things together."

Your gifts and that wee boys gifts gave you that chance. Sometimes you have to follow your heart it often leads to something wonderful and is so often missed because we are frightened to intrude.
I think we instinctively know when its ok to take up our opportunities and when not to.

Perhaps we should all try and connect more. The worst that can happen is that people dont want to talk and we'd be a bit embaressed for a few moments.

Being looked at and not talked too is often the scenario and as a recipient of this it doesn't feel good or get easier as years pass. I'd always appreciate the watcher talking.

Deb said...

As the parent of a beautiful 15 year old Autistic child, my response to your question would be this.

When was the last time you offered your parenting advice to a family of three, without a child with down syndrome in the mix, your input?

Isn't acknowledging the difference, perpetuating the difference?

Michelle said...

Our daughter, Ruby, has DS and she's 18 months. I really love hearing other people's stories - she really draws people in with her smile.

I always welcome kind strangers - just don't have time for ignorant ones. You can tell pretty quick which kind is which.

Jo said...

I don't have a child with a disability, so maybe my thoughts don't count, but I think rickismom has a good approach. As an adult with a disability, I like to get all the info I can.

I also had a question - I used to be a patient of Dr. Ruth Ryan's. I have genetic beriberi. Ruth started me on B1 injections, but what neither she nor I realized is that I still wasn't absorbing the B1, even through my muscles. My current doctor, five years after I started the B1 injection therapy, thought to check my B1 level since I was still having so many problems and the level was still very low. She doubled my B1 dosage and that jump-started my muscles into absorbing it. I would like to give Ruth the info that maybe some people with genetic beriberi need to have their B1 level monitored even after they start on injections, but I can't find contact info for her anywhere. Can you point me in the right direction?

Thanks -- Jo

ADR said...

As the parent of a child with Down syndrome, I have two reactions.

First, I always love the immediate connection made with a parent or sympathetic other who notices James, pays attention to him directly, and tells me as his dad something about their reasons (I have a brother, my son is 25, ...)

But thinking back to the days when he was less than a year old, I remember a family visiting with their 10-year-old daughter. The intentions were all good, but it was just too much. We were too busy trying to get James to 1 year old to think about 10 or 20.

But if I were in the position you found yourself in at the restaurant, as his parent I would have been thoroughly encouraged by someone noticing and reminding us of his full potential. I don't know if that would be different if I didn't already have lots of encouragement in that direction.

Just my thoughts.


datri said...

As a parent of a child with Down syndrome and autism, I have to admit that I get an odd kick out of being part of the "disability club" and that people just talk to you out of the blue because of it. I was at the mall and a lady was gushing all over my daughter and then she mentioned she had a neice with Cerebal Palsy. OK, so because you know someone with a disability, you get to bond with my kid instantly? I find it odd, but I don't mind. Then again, my child is 4. Maybe I would not have been so receptive when she was a baby (or 1 or 2 or even 3!) since I was still coming to terms with my own grief.

gracie1956 said...

Having been a regular reader of your blog for quite a while there is no doubt in my mind that you would have appoached the situation with great tact and sensitivity.
As my daughter was growing up it seemed like a lot of people did one of two things and both just drove me nuts. They either went to great lengths to pretend nothing was different about her and she was invisible or they would ask me, "what's wrong with her."
Both really bothered me but I don't see you as doing either. I say trust your heart.

Chris H said...

I agree with Deb. You have assumed that those parents don't know that their son has potential and that one comment from you will turn their whole world around (exaggerating). It's one thing to start a conversation about what you have in common, but it's quite another to instruct them on what to expect.

However, I think there are ways to start a conversation that don't come off as you know all and they know none. What if you said something like: "I remember the days when people with disabilities weren't out to breakfast with the family. Thank you for bringing him out and isn't it wonderful all the services that are available these days? It's so nice to see so many people with Down syndrome accomplish their hopes & dreams." Then you can gauge your next move based on their response. If they look skeptical, you educate. If they look pleased, you don't need to educate.

How would you feel is someone approached you and said, "Those wheelchairs are so sluggish. A much better model for you would be the XYZ4000." I think you'd feel a bit condescended to, and that's what I think you should be careful to avoid.

Does this help?

Lisa said...

Oh wow, Dave. I have no wise comments for you. I was in the same situation this summer. We were sitting right next to a Mother and daughter on the beach and when I noticed that she had Down Syndrome I immediately wanted to rush over to her Mom and tell her how cute I thought her daughter was. I settled for smiling at them both, often, but it was hard not to go over and talk to them. Like you, I wasn't sure if I would be bothering them or making them happy.

Let me know what you decide :)


Rosemary said...

I've been reading your blog lately at the recommendation of a mutual friend, and I keep finding new insights and thought provoking ideas from you and your other readers. When our son (now 26)was just under a year old, we had some disturbing encounters that left us feeling as if there was no real potential for him. In one painful instance, we had taken him for Christmas photos and went into the store elevator. A woman and her young son were already in, and when we entered, she grabbed the child and moved as tightly to the opposite corner as she could, covering the boy's eyes and turning away herself. It makes me sad to this day. We had enough of those experiences that we would have been happy to have someone come over and give such encouragement. I'm sure you would have been sensitive about it! I agree it's a great club, but for us those early days were hard and we felt very alone. Our young man has become an athlete, a worker, a very loving friend, and so much more that we could not envision. It would have been nice now and then to have heard the positives.

John R. said...

...go with the initial gut........first gut is always reliable and always is honest.....period.......

I hope he was having a big Scottish pancake......I hope you and Joe were as well.....

ntmjbmom said...

My daughter with Down Syndrome passed away..and I always feel a desire to speak to someone with a child with Down Syndrome..even though they have no idea about my daughter.

I would probably have voted for "let them eat their breakfast without bothering them"..but totally understand the desire to connect with them.

I have that same urge a lot..


Anonymous said...

I have a 4yo daughter with DS and she generates lots of attention!

I'm going back and forth. To be honest, like another commenter said, sometimes we just want to be like every other family - anonymous and not semi celebrities.

I think it would have been OK to go say hello. My reasoning is that the little boy, young as he was, gave you a social opening by smiling and waving. And every parent enjoys sincere compliments about their child. "He's got such a great smile, he made our morning smiling and waving at us!"

And if you want to create an opening for more conversation add "He reminds me of {insert positive older role model here - a young man I've worked with etc}."

Then wait and see what the response is. You've presented yourself as 1) friendly and 2) knowledgeable. Then leave it up to them if they want to go further with the social banter.

Lene Andersen said...

Not offensive to ask here, but I think to offer books and opinions might walk the line. It assumes they don't know and it's quite possible they already have that information. On the other hand, if they don't, riskismom's suggestions for phrasing the question is perfect.

Becca said...

Very interesting. My daughter is 2 1/2 and has Down syndrome. By the time she was 1, we had done so much research we felt pretty positive about her potential and about our abilities to parent her in a way that would enable her to reach her potential. I do welcome people coming up to us to say hi and maybe share the way a person with Down syndrome may have touched their lives, but if they were to try to give us unsolicited advice I can assure you the conversation would turn pretty chilly pretty fast. I also like the idea that rikismom had about starting the conversation with the fact that you work with adults with disabilities and perhaps that you've been so enriched by your encounters, etc., etc., etc. That would probably make me feel like you had some sort of authority in the matter, and I would probably want very much to hear what you had to say.

I was speaking with a new parent of a child with Ds just last night and she asked me if people are nicer to us when they see our daughter has Ds. I hadn't really thought about that before. I know they are nice to us because Samantha's cute, but they may not ordinarily have approached us in the first place otherwise. It was an interesting thought.

Ettina said...

I think what I'd (like to) do is just come and comment about how cute he is and go on from there - that's what I do with NT kids that age too, by the way. But I don't know how people will react, especially since I don't look disabled, so a lot of the time I just sit and watch without trying to interact. The fact that my disability affects social interaction makes it even harder for me to know what to do - I get along fine with disabled kids, but I don't really know how to relate to their parents.

Kathy said...

good question, and interesting answers. I see both sides. I have a son, 15 months old, with Down syndrome. Personally, I would have loved to have you approach us, I'd have likely recognized you from your blog. One of your commentators said "Perhaps we should all try and connect more", which I totally agree with, but another said "Isn't acknowledging the difference, perpetuating the difference?" which I understand, but then I think, we are ALL different, and each of us has disabilities of one sort or another, whether diagnosed or not. Maybe it's all about personality, either you accept and appreciate that you were approached, or you don't. I say do it, and if rebuffed, please don't let it stop you the next time... Maybe it will be me. :o)