21 Jul 2009

Do you know what it's like?

Lady and Thomas start summer scheme today. It lasts all day from 9 to 5. Thomas has never done anything like this before and was a little nervous but excited. I arrived a bit early to sign them in. There were quite a few families gathered, and since it was raining hard, everyone was milling around indoors instead of lining up outside. Duncan was, I think, overwhelmed by the crowd and started running around and shouted a bit. I scooped him up in my arms since I had to talk to a staff member. I asked if I could sign my children in quickly as their brother is autistic and finds the wait difficult. Duncan was kindly providing evidence of my statement. The staff member agreed and went to fetch a pen. When the staff sat to tick off names I sidled up to sort out Thomas and Lady. That done, I heard a woman behind me complain loudly that "some people are so rude" and something about "pushing children." I turned, with Duncan still in my arms and asked if she was talking about me. She said yes, and that I'd pushed past people. I explained that my child is autistic and I'd been given permission to sign my other children in quickly. She said, "well, but you pushed my daughter and didn't even say sorry." I really don't think I pushed anyone, but perhaps Duncan in my arms had brushed the child without my noticing. Anyway I apologised to the girl who was about Lady's age, and said I hadn't meant to push her. The mum moaned a bit more but I didn't hear what she said. I looked at her, exasperated and said, "Do you know what it's like?!" She said no, and I left to say bye to Thomas and Lady. They had been standing apart from me in silence the whole time. I am not sure if they were just letting me get on with sorting things out, or if they were a bit concerned by my or Duncan's stress, or if they were embarrassed at all. But they smiled and took their swim bags and packed lunches to the hall to join the fun.

Walking out to the car I though about the encounter and what I'd said. I know I needed to get that accommodation for Duncan and that others could see it as unfair. I suppose it's the same at theme parks etc. when I get a pass to allow him to go on attractions more quickly and some mutter about queue jumping. I was concerned that my response was less than optimal. My last statement could be read as rather "poor me" when what I meant was, do you know what it's like to have to deal with people like you, not, do you know what it's like to have such a tragic life!

Ach well. It's done with now. Duncan and I have plans. It's going to be quite nice for just the two of us to have time together.


bullet said...

It's a pity the woman wasn't more understanding. I hope Lady and Thomas enjoy their scheme. Tom has started at his first holiday playscheme today. It's one for children with disabilities. Two days a week over four weeks. One of the teaching assistants in his school was there when we walked in.
"Hello Tom" she says to him.
"You got your name written on" he tells her.
I left him walking into the main playscheme area without a backwards glance on him. I think he'll be ok.

kathleen said...

I have been in similar situations..What I have tended to do (this is probably the N.Y.er in me) when I hear muttering-is turn grin widely and say "It is because I am queen of the universe..didn't you know?" and walk on. If they haven't noticed that I have my hands a bit full..well then, they are not going to pay attention as to why they are full.
I love that it is called a "scheme" it sounds so intriguing!

Sharon McDaid said...

Hi bullet. If I hadn't written tat post as soon as I'd come home I'd have forgotten about her by now.

I hope Thomas enjoys his playscheme. There is nothing around these parts that I can find for disabled children. But I'm meeting a woman from the children's disability social team on Thursday so perhaps something will turn up.

@Kathleen, fantastic! Perhaps I'll try to channel your New York style next time!

I laughed when you pointed out the word "scheme" as I'd never considered it before. All very cloaks and daggers really!

farmwifetwo said...

We never push our way to the front of the line. NEVER. I find it ignorant and rude. Yes, we've had our moments in line and yes when I've told the people around me about the autism a lot of the time they offer to let us go first.

But I say thank you and refuse their offer. They appreciate what we are doing when they realize it's a lesson in social and behavioural skills and are usually very polite once they understand.

It's not polite. Yes, the behaviour may be caused by the autism but autism is not an excuse to behave badly.

At 7 and 9 we have learnt this lesson and although it may not always be perfect, they wait.

Including when we go to Marineland in Niagara Falls in a few weeks. We will not be buying any disability passes to push our way to the front of the lines. We'll wait our turn like everyone else.

Lisamaree said...

I love Kathleen's response. Going to try that soon.

We do that all the time at movies at Dundrum and sometimes, rarely though, but sometimes another adult looks over and frowns as I get Boo his coke and popcorn. But I have given up karate kicking them in the head and instead just concentrate on prompting Boo to stand still and not go for sprints, not take the top off the peanut machine, not put his hands on the Bruno poster's bum and not keep trying to undo the queuing guide tape things that ping back if you unclip them.

They get the idea.


(The staff at Movies Dundrum are unFAILINGLY helpful, and they always remember to say Hi to Boo and wait for him to look at them)

Lisamaree said...

PS: Bratty and Boo did Typical School summer camp this year with their tutors in tow. Boo was a bit "Meh" but Bratty LOVED it.
I am going to send her on a typical swim camp for a week or two in August. In a semi-special needs friendly centre (where we do our special swim lessons) but with typical kids. It will be great if it works. xx

Sharon McDaid said...

@Farmwifetwo, so my actions were ignorant and rude in your eyes. What a shame.

Some days and in some situations Duncan can wait, and in others, for now, he can't. He's a runner.
I assess the circumstances and based on my superior insight into my child's abilities and needs, decide how to proceed. Some times are appropriate for teaching certain skills, some aren't. I have no shame in requesting accommodations to enable us to get out and about in our community. I would rather not have my family hidden at home where we can't upset other people's fragile sensibilities.

@Hammie, big thumbs up for the Dundrum cinema staff! Sure isn't it far better that he gets to enjoy his films (and the amazing credits!) than that some whinge about cutting line. Duncan would tend to run off too so needs a lot of direction and sometimes when it's a matter of waiting somewhere, I have had to just hold on to him until we're finished.

I hope the swim camp works out, that'd be great. There's nothing here for Duncan to do. It's time I put my campaigning head on and demanded more for children like him.

But I enjoyed the time for just the 2 of us yesterday and we'll make our own fun together while the others are busy this summer.

AnnB said...

Life is a long lesson in compromise and compassion, some days we are good at it and some days not so good. Give yourself a break Sharon, your compassion for your child's situation far outweighed that rude mother's out of joint nose!

Fair play to you farmwife if you have the energy to be the perfect queuing citizen. Some of us are not blessed with your level of perfection.

Rock on Sharon!

jazzygal said...

The lady in the queue?? Sod her!
We've all had that experience, haven't we? I've had it in Supermarkets and in Mass when he was running around (actually it was limited running around cos I was actually in control).I mean, if they can't show compassion in Mass and even think to themselves MAYBE there's something wrong with that child then really...sod 'em. All of them!

I bypass queues in theme parks and I don't give a hoot...even though we don't need it as much. However, I KNOW if I don't things will do downhill rapidly. That said, we queue when there's not a long wait cos your right FarmWife.... they need to learn..and it's a good social skills exercise. But only when the child is ready for it. My child is...yours are but some others aren't!! It is not good to judge others Farmwife.... we of all people know that!!

Sharon, my guy just did his "social skills camp"...that's what he called it! 2 days a week for 4 weeks in July as part of our July Provision. The Resource Teachers in a local school got together and provided it. They had some helpers too. So, they're on paid hols, get paid for this, provide much need help for our kids and experience for the helpers. Win Win situation. It's a great idea...one I might push with our school. You just have to pretend the support is being provided at home....shhhh, don't tell!

That's fantastic news Hammie!
xx Jazzy

Alan in Belfast (Alan Meban) said...

Reading story on BBC News reminded me of this post.

In one way, I suppose it's good that the issues are being talked about - so no matter the attitude, more people are aware that there are issues and good reasons for expedited entry (sounds better than queue jumping!)

I liked the closing quote:

What people need to remember is that it doesn't just make it easier for the child and their carers, it's better for everyone in that queue too.