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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Autism & special needs buggy... when do they stop needing them?

19 replies

LunarRose · 23/04/2012 11:33

Feeling a little down about everything TBH

Year and a bit ago DS (4 years) was prescribed and received Maclaren Major. It was a marvel - A pushchair that didn't collapse on him

Now however after a year's solid use, days out, disneyland and a trip to London etc, it is looking decidedly knackered and won't open always without banging it. DS appears nowhere near being without it for a day out.

NHS have suggested a convaid cruiser as an stronger alternative. looking at the website it feels like overkill. But the thought of destroying another buggy within the space of a year is a bit depressing.

Appreciate advice on the merits of the convaid or actually just anything that might make me feel a little better?!?!?

OP posts:

Triggles · 23/04/2012 17:00

Watching this with interest. DS2 is currently in his Mac Major, and thankfully it's in pretty good condition at this point. But I too am worried that when he gets too big for this (or when it's knackered at some point) we are going to have to get something else again, as it is still used regularly.

Triggles · 23/04/2012 17:00

DS2 is 5yo.. 6yo this summer.

thisisyesterday · 23/04/2012 19:27

would they give you money towards something else instead? i know some areas will do this, some are more reluctant

just wondering if then you could get something like a pre-owned mountain buggy terrain (they did a SN version with longer footplate) which would last a lot longer and be much sturdier

ouryve · 23/04/2012 19:46

DS2 is almost 6 and is on his 2nd Mac Major (we replaced his old one when it reached the point that one heavy kerb bump and it would have fallen apart - it's bent! It's also his 3rd if you count that we replaced the original replacement we bought because the wheels were sticking badly) The good news is that he is needing it less, now. He can manage the walk to school and back, so long as the ground isn't icy and he isn't unwell and he is doing better on foot (with a harness) when we go out to places. He's much better with all the start-stop and waiting around involved in a shopping trip and no longer runs around our legs or lies on the floor.

So there is hope. (though he had a loud crazy moment in M&S, the other day when he wanted to sit on every single sofa and throw cushions on the floor and I wouldn't let him!)

eatyourveg · 23/04/2012 19:53

ds2 was in his until around 8yrs old

Marne · 23/04/2012 20:09

We have just bought a 2nd hand sn mountain buggy for dd2, she's 6 with ASD and hypermobility, its a lot more robust than the mac major (which we have used up until now) and is great for off road and pushing around theme parks etc..

We were hoping not to need one this year but dd has a habbit of refussing to walk or running off .

Original poster

LunarRose · 23/04/2012 21:16

I was hoping there might be a mountain buggy option through NHS but it seems not, I think the mountain buggy would suit us pretty well.

Did you think about applying through family fund?!?!

Is the convaid huge, the OT who I spoke to suggested it was heavy to push. Think the problem with the Mac is that the vertical support that goes from the handle to back wheel has actually bent.... I'm just not sure it's strong enough

Even if he's in it till he's 8 that's another 3-4 years!! 3-4 buggies? Perhaps I was spoilt as my normal maclaren did ok for 2 kids and 4 1/2 years .

Well that's a bit of a meandering post....

OP posts:

Marne · 23/04/2012 21:34

Family fund would probably help towards it. We had a mac major funded by family fund. Our mountain buggy was £170 on e-bay, i only got it today but i'm very impressed with it, perfect for us as we do a lot of off roading.

thisisyesterday · 23/04/2012 22:21

a friend of mine was given a wheelchair for her dd, which was really unsuitable for her needs.
she asked if they would just pay money towards a specialist pushchair.

they said no

she fought and fought and eventually they did say yes, you can have the cost of the wheelchair to put towards the pushchair you need.
cos ultimately it doesn't cost them any more does it?

so it might be worth digging your heels in and saying "this is unsuitable, it's going to cost you X amount if i need a pushchair every year for the next 4 years. Please can we have the cost of the Major to put towards a purchase of our choice"

you never know!

MedusaIsHavingABadHairDay · 23/04/2012 22:32

We had a Convaid for DS2..used until he was 11 ..and would have used longer if he hadn't been so tall (his was supposed to go to mid teens!). It was brilliant!

They are SO much stronger than majors (which we had previously)..they cost over £1000 for the basic models so you would expect them to last and they do.
If you can get a scout..they have all terrain tyres and are brilliant. My DS2 loved his, and I loved the high handles as they were comfy for me.

They do fold long and narrow tho..a bit longer than major buggies (in case you drive a mini!)

We now have an adult wheelchair.. cheap NHS budget stuff and it's rubbish compared with the convaid.

Original poster

LunarRose · 24/04/2012 10:16

The scout looks good... I wonder if Wheelchair Services would get that

If you don't mind me asking (and poor choice of words) does your DS have other needs than the autism. talking to the OT on the phone they said the only other option was the convaid cruiser but that my Ds doesn't have postural needs so hey're not sure it's suitable.

They can't find anything "physically" wrong with DS (low muscle tone but not off the scale, very bendy but not quite enough to diagnose hypermobility ). but Physio in our case has said that because his sensory issues are proprioceptive and vestibular, he finds it tiring processing the imput. Therefore he get tired and also struggles processing movement (and how to move) when there are other sensory imputs, bit like a computer running out of RAM.

So because it isn't "physical" we not getting a lot of help. I can't decide if what the physio says is utter tosh and I need a second opinion. But it does explain why sometimes he can walk bits and pieces and why for other activities he is totally dependent on the chair. I also really don't how how that gets better either. That's totally ignoring the Autism dropping to the floor issues .....

I'm thinking i it is the case and I can get him off the beaten track a bit I'm hoping I might get him walking a bit more and strengthening up. But according to wheelchair services this is a lifestyle choice but if the buggy isn't strong enough that is grounds for a change.

grr...

OP posts:

Triggles · 24/04/2012 10:32

a lifestyle choice? What's that supposed to mean?

I do like the look of the Convaid Scout. Nothing wrong with our Mac Major at the moment, but I think when DS2 gets a bit older, we may look into the Scout or something similar. I don't anticipate any major changes in his abilities or behaviour (obviously would love to see improvement, but not setting myself up for disappointment either), so I imagine he'll need another as he gets older. He's quite tall and I don't think the Major is going to be comfortable for him as he gets taller.

MedusaIsHavingABadHairDay · 24/04/2012 17:55

DS2 does have other issues... but not massively so. Hypotonia, hypermobile (or was.. these days he's gone the other way and has tight hamstrings and hip flexors) Wears afos cos his feet are mind blowingly flat and crap but he is functional.. he just gets tired fast, has what I'm afraid we call his 'Forest Gump' look on the move.

Many many children with ASD also have poor muscle tone so I think you could argue that it IS a postural/physical issue:)

shazian · 24/04/2012 18:15

My 11yo with severe autism, low muscle tone used to have Mac Major, but is now on his 3rd wheelchair. I asked about another type of pushchair but was told there wasnt one! My ds will not walk at all when it is busy ie shopping centre etc he will just drop to floor and not move at all.

Triggles · 24/04/2012 18:32

shazian - DS2 does that as well when he's distressed or overwhelmed. Other times he is a runner. Can't win really. Whether he's refusing to walk or whether he's running away, we still get tuts from people.

shazian · 24/04/2012 20:00

lol Triggles, mines a runner too and not only that he's faster than me so i cant catch him, which is scarey really as he has no sense of danger..... all in all better keeping him strapped in

Triggles · 24/04/2012 22:52

same here... absolutely!

eggyblackett · 24/04/2012 23:09

We have a Convaid Cruiser Classic for dd1, as a replacement to her Mac Major. I really like it - its similar to the Mac but far more robust. It's also crash tested so it can be used in both the school bus and our van. It folds down well in comparison to other wheelchair options and compared to the other shoite wheelchair solutions we have had to endure its great. It also has a decent handle height so that if you are over 5'5" you don't have to walk like Mrs Overall to be able to push it.

Original poster

LunarRose · 03/05/2012 09:07

Just wanted to say how much I had appreciated the replies and sorry I hadn't reponded. Hadn't written because I needed a bit of time to think about things. Now think the cruiser wouldn't be the end of the world, but really want to hold out for something better.... Couldn't have said that without your guys help

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