Any mums with experience of ASD and maclaren majors step this way please . .. . .

[SammyK]

Hi

DS is on the spectrum, either HFA or Asperger's still not fully dx'd and we finally have an appointment with wheelchair services to assess for a maclaren major on Tuesday.

He is 4 but in 6-7 clothing, big and heavy, and it's now ridiculous pushing his maclaren volo.

What I want to ask is how I can best get across to the assessor why he needs one so that we come away with them agreeing he needs one. I'm worried they will feel his needs aren't that bad as they are seeing children with physical disabilities on a regular basis, whereas for DS it is more of an emotional issue, also for safety reasons and so we can still go out as a family as normal ie to shopping centres, long days out, etc. I can't afford to buy one even second hand, so don't want to not put myself across well and miss our chance for them to help us.

Any tips, advice or experiences welcome.

Were waiting to get the wheelchair services to see us about one and the ot told us that the only chance we have of getting one is because of the harm my son does to himself, he headbangs on the concrete and lashes out at strangers etc. we wouldnt get one just on the basis of his general asd behaviour and the lack of awareness of danger apparently!!! hope thats a help. I have one i bought from ebay that we use but its not in great condition but does the job but got him referred before we got it so just didnt tell them!!! I also have another one i bought secondhand too as i wanted the seat cover on it and the stupid secondhand shop wouldnt sell it seperately!! I only paid £30 for it as a whole, its not in great condition but seems ok. Keep meaning to list it on ebay as although it might not last forever it will do someone for a while anyway or for infrequent use and then the money can go towards my wedding fund

dunno if any of thats any help? if you dont get one off wheelchair services i could sell you this spare one and get it couriered for maybe £30 in total? though obviously hoping you get one off them!!

Thanks, not sure how my local authority view it as only mums I know with dcs on the spectrum are MNers and not local mums.

I will have to wait and see I guess. He is not a danger to others but can be a danger to himself. I think maybe if I write down for them how often he needs it in a week, and the reasons why that maybe will help during the appointment?

Anyway best get sorted for bed, will check thread again tomorrow after work.

Hi Sammy. .. hope you get what you need... like jenny, i got one from ebay. it was brilliant, until I took my son to a folk festival in it and we broke the frame pushing through thick mud. He had to walk from then on! my son also very large, and low muscle tone. But I can really relate to the need for a safe restraint!

Just wondered, whether it would be worth stressing the behavioural issues as well as the physical. certainly when you apply for DLA, there are a lot of questions about does the child understand danger, would he run off, get lost, get confused, etc behave inapprapriately, attack others etc. I couldn't take my son shopping without the pushcahair cus as soon as I needed two hands to open my purse or pick something up, and I let go of him, he would dissappear. Still miss it!

I do hope the appointment goes well, but otherwise do look on ebay or gumtree sometimes they're not too expensive. I really noticed how much easier it was to push than a normal maclaren... made for the extra weight you see. x

We got ours three years ago when DS2 was 3. Got it on the basis that he often refused to walk, would run off and had no awareness of danger. The fact that I had 4.5 year old DS1 as well may have made a difference?
It sounds as if the rules may have got tougher since then.

We did it on the basis that DS wouldn't fit in another pushchair, and he HAD to have one.

here they wont fund for anything more than physical diffculties not even if the asd causes saftey issues

I got our referral from our GP who looked at me completely blankly and said she would have to call me back a little while after our appointment!

I really hope the funding here isn't the same pheonix, if so I will be hopping mad if I have to drag us both across town in a taxi to an unnecesssary appointment.

Yes behavioural, emotional, he does tire quickly too. When out he either runs, walks really slowly, or if over loaded/anxious walk right behind me grasping onto each of my legs which also gets us nowhere fast. Also in terms of physically for me, having him in a pushchair allows us to get out and about, I can't drive and can't carry him. Also I will be having an op soon after which I will not be allowed to do anything strenuous including lifting!

keep you fingers crossed for tomorrow
will report back

DS doesn't harm himself thankfully, but when anxious he can cry so much he brings on his asthma and can cry himself sick he gets so upset

He got one!!

Lady was really nice and she said she sees a lot of boys with autism fo major buggies. Has ordered for me and it will come to my house. Me and DS are now flopped on the sofa as he has also done preschool and the dentist today! Dentist went well too - we have an special needs dentist whose daughter is autistic and she was really pleased with his teeth - a real relief as he had to have FIVE out last time he went!

Good day or what?!

Thanks everyone for your support and advice, I was so anxious this morning and am now so pleased!

Aw, fab news! In some ways it's easier for us to get stuff as DS1 has cerebral palsy too, which at least is a 'visible' disability.

GREAT day. well done.

I was saying to DP last night, that I was dreading having to explain to someone yet again that although DS looks normal that he is affected everyday by his disability.

I often have people looking disbelieving at me as I try to explain, they don't seem to realise that a five minute snapshot of his life is not accurate enough to form a judgement of his needs and issues. TBH I don't bother explaining to anyone unless I have to, say a health professional or I am in a confined space with someone whilst DS is having one of his moments.

laumiere, it's rarely easy for a mum of a child with sn to get stuff IME regardless of how they appear

it is more to do with how stubborn persistant you are I have found