Saturday, 20 October 2007

Escalator Surfing

For about 12 years now C and I have surfed the escalators in our local shopping centre. Its part of our routine, its repetitive and they go in straight lines!! The security guards in the centre know us well and have watched C grow up. On many an occasion they have come to our aide when the public have, how shall I say politely - not been very nice. They have also let us in the centre on days when it has been shut and turned the escalators on just for us. How wonderful is that!!




C loves watching feet (less threatening than faces!) So he will stand or rather stim (rocking and jumping) for hours just watching. He is so happy doing this. Luckily in the shopping centre there is a cafe, right by the place he likes to stim, so my PA and I get our caffeine fix whilst we keep an eye on C making sure we are on the ball incase of any trouble.




My PA is wonderful. She has the same attitude to disability as I do and knows me and C well. She has been of great support over the years, she is my rock, my shoulder to cry on, and we have a laugh as well. I employed my own PA under the Direct Payment Scheme, this allows you to find your own support to fit what ever needs you have. Before having this social services were sending me nurses, a different one every time. This did not work and I didn’t want to use the local respite care home, I wanted to be with C. So employing my own PA works very well. What do other people do? Am very interested also to hear what happens in other countries.

36 comments:

Elissa said...

Sounds like you have a wonderful arrangement with your PA - it's great to be able to choose your own!

I still haven't got my head around how things work here in Australia, you hear different things from everyone and we are still at the early stage of 'investigation'. Perhaps if there is another Aussie reading you could help me out here!!

PS I love the photo of your cat!!
Our cat likes sleeping on our sons bed and has an intuitive way of sensing when our son needs calming, he usually chooses this time to approach him and snuggle in for a cuddle.

Nancy said...

Three wonderful photos!
May I ask ... he is dressed so nicely, does he mind what you pick out for him to wear? I love the cap. I love how you've matched his shoes, socks and pants. Are there things he will refuse to wear?

Looks like a nice outing =) I'm glad he's home with you for a bit.

Casdok said...

Thank you! I actually think it is quite important to dress people with special needs well, because they do stand out.
He would prefer not to wear any clothes at all! I could put anything on him and he wouldnt bat an eye lid. But for ease of dressing him, i dont buy things with Zips or buttons, it is all elastic!!!

Shrink Wrapped Scream said...

Oh those photo's say it all! And yes, he does look smart. I agree with you totally, it's so important to dress him well (although I increasingly find it a challenge to find clothes without buttons and zips , particularly trousers, and trainers seem to stop velcro fastenings after size 6). When the children were younger I employed full-time help, some of the salary was funded from Sams disability allowances (about a tenth actually!). We had a wonderful helper who stayed with us for six years, and who is god-mother to my youngest. She left to start her own family, and we had so many bad HORRIBLE experiences with trying to find a replacement I eventually gave up. I find it easier this way.

farmwifetwo said...

I have a funding label or you can wade through the Autism label on my blog. It's too long for here to explain.

S.

Christy said...

Hmm I enjoy watching people, too. The whole person though not just their feet. Escalators scare me haha, but I'm glad C enjoys them. And your centre has fantastic security guards! They should get a raise...or...some cookies.

As for the PA I would do exactly what you are doing. I would want to spend time with C and hire out my own PA if the local chapters weren't helpful.

BBC said...

Interesting...

I don't really know how things are in this country but there is a lot of disabled and challenged people here.

They seem to get the care they need, but I haven't had much experience with them other than to live around them.

This isn't a large town but there is a lot of special housing projects for them here, and transportation. And care facilities and such.

When I'm around them I just give them their space, it seems like the best thing to do. If they are doing something I don't want to watch, like some of them when they are eating, I just don't watch.

But I wouldn't expect them to leave, everyone needs some social life.

ChrisH said...

Heartening to read that the shopping centre have turned the escalators in for C before. Well done them.

Chopski said...

I once got my shoe laces caught in the escalator in a very large shopping centre. My boy's thought it very funny as I was pulling with all my worth to stop myself being sucked into the mechanism. Me, I wasn't so amused! You can empathise with the smell of poo!!

Samantha said...

What lovely people at the shopping centre! That is so sweet of them.

UN PEU LOUFOQUE said...

The PA system soudns an excellant scheme far more humane to you and C to ahve the same person you can both trust and who understands adn knows you than a different face each week!

Beth said...

Nice to hear of such understanding and helpful security guards.
And C. looks like he is having such a good time in those pictures!

Pondside said...

As the song says "Beautiful, beautiful, beautiful, beautiful boy".
Your escalator outing sounds like a lot of fun - and it is good to hear that there are people like the security personnel who are not afraid to make a human connection.
Over here parents of children with autism have to fight all the time - the latest is the fight for funding to keep the children in the school system past early childhood. It's all about money, and families are pretty much on their own, although respite is available on a regulated basis.

Casdok said...

Funding is the biggest fighting issue here as well. I seem to have spent the last 19 years fighting. And very wearing it is to, but what else can you do?

Marla Fauchier Baltes said...

That is so awesome that they put on the escalators for just you guys at times. Very heart warming. Here respite can be very hard to come by. We only qualified for it once when Maizie was three and that was only because I begged for it. Quite literally. It was short lasting, maybe a month or so, since they agency covered the cost through a donation. Many people who get respite funding "bank" the hours and don't use them because they don't like the services. That funding then is just money that sits there and is more or less wasted. This has always been frustrating to me since some parents are so desperate for a break. We have always had to hire our own help when Maizie was at her most difficult time. We never qualified for services because we made to much money. They take your income into account in our state. Which is not fair because Maizie is a very expensive child to care for. The governemnt does not take expenses into account. Children also have to be tested and determined mentally retarded in our state in order to get assistance. Many children, our daughter included don't fit into that category and so there is no help provided. It is very frustrating. Now when we lived in New Jersey we did qualify. There they did not take our income into account it was based totally on the child and the specific needs of the family. Every state is different.

Palm Springs Savant said...

what a teriffic post. I'm a new visitor to your blog, and I must say it is wonderful.
Stop by and say hi sometime.

Billy Boy said...

Fully agree, they couldn't coped with him hence I have learnt a lot from you. Still think mum knows best......

lampworkbeader said...

It's nice to see a picture of your boy. Thankyou.

Kelly, Mom to Brooklyn said...

I am getting caught up on everything after being away from any computers while in Texas with my daughter, thought I would stop in and say hi. I hope you have a wonderful 2 weeks with your son!

But Why? said...

Sounds like you had a great day. I like the idea of escalator surfing - I was always rubbish at the marine variety. And I love the fact that they opened up for you to surf the escalators! How fantastic is that?!?! xx

abstractjenn said...

It's so wonderful to see updated photos of C. He is so tall! I'm wondering what PA stands for? In the US we have PCA which is Personal Care Attendant - which is what I am for my two boys.

I was also happy to hear about the security guards at the shopping centre. It's a shame more people just don't get it.

Glad you are having fun!

Omega Mum said...

I loved those nice shopping centre people too. Very heart-warming.

Anne Brooke said...

Those security guards - fantastic!!

A
xxx

Daisy said...

Wonderful how the security guards know you and know C. My Amigo (age 15) learned to handle escalators, but it's harder for him because he is blind.

slouching mom said...

I too love that the guards let you both in even when the mall is closed. How lovely of them!

Preposterous Ponderings said...

That is awesome that you get special treatment at the mall.

Truth be known, I bet the guard has a crush on YOU! LOL

Mary P Jones (MPJ) said...

I want to hug those security guards! How lovely that they know, support and help you.

misha_k said...

I wanted to pop over and day hi after seeing your comment on one of my posts.

That is so great that the security guards will let you into the mall even when it's closed and turn on the escalators. I'd love it if I could get that done here. My son also enjoys them. He goes on them several times whenever we're at the mall. He loved them yesterday when we were at the airport.

It's great that you have a PA who's such a good support. I just started my son with a mentoring program and so far he really likes the guy he spends time with.

Casdok said...

PP, now thats another story!!!

WesterWitch/Headmistress said...

Wow - the security letting you in and turning the escalators on for C - now how thoughtful and kind is that. Also heartening to hear of this kind of thing in an increasingly selfish word and I don't mean selfish in the good sense.

Oh I am so pleased for you that you have a PA to support you. And I so admire you. Big hug to you and one to C as well if he doesn't find that too alarming.

Odat said...

I'm glad C had fun! And so glad you get good support.
Peace

Jen said...

I'm not sure exactly what a PA is, but in Canada (Ontario), I get "workers" for a specified number of hours each week (usually 12-16 per kid), and I can either hire them myself and pay them out of funding, or have them go through an agency.

They've been an absolute lifesaver over the years- I figure that we've probably had about 50 of them over the last 9 years (for 3 kids), and we're still in touch with almost all of them...we recently celebrated the kids' 12th birthday and I'd say at least 2/3 of the people there were workers that we've known for at least 5 or 6 years. I sure wouldn't have survived without them.

That said, the funding here is fairly limited if your child has "extreme" needs. My son needs one to one assistance 24 hours/day, so he's in a wonderful group home now...for some reason the govt. would rather pay for full-time care for him out of the house rather than pay the third of that cost that it would take to fund home-workers for him. Long story, and he's doing quite well, but sometimes the reason for their funding decisions completely escapes me.

Sara said...

I am a worker for a little guy here in the states and I'm through an agency. The family got to interview me and make sure that i was the correct fit for the situation. So far seems that I am! The family doesn't have to pay me, they get an alotted amount of "hours" for respite, and for habilitation. So he and I do "work" during the weekdays, and we play and watch movies and go to the park on some weekends. Thanks so much for stopping by my blog!

Anonymous said...

I knew it next greatest music man there he is strumming the gutair i can see it x

mommy~dearest said...

My son receives Social Security through the government (US). It's a meager amount, and wouldn't come near to covering personal assistant services. There is a big battle for funds here in the States as well. I've been battling my brains out, and my son is only 6.

LAA and Family said...

In Virginia, USA, we have what are called "Medicaid Waivers." After being evaluated, the individual is given a certain number of hours per week of personal attendant help. We have to hire and train our own help. Since the end of July my son has 30 hours per week, plus 760 hours per year of respite help. I am fortunate to have 3 individuals helping my son right now. The waiver my son has is for Elderly and Disabled Individuals. I tried applying for the "Developmentally Delayed" waiver but was told my son's IQ score was too low, we have to apply for the "Mental Retardation" waiver. There is a 5 to 10 YEAR waiting list for these 2 waivers! I worry that government involvment makes the whole process of obtaining assistance inefficient, but I don't have a better answer or even an idea for a better alternative right now.