Here are some suggested organisations that offer expert advice on SN.
Maclaren Major Pushchair for ASD son(23 Posts)
Hello Ds3 was diagnosed in May as being moderate/severe ASD he is 3.7yrs with lots of issues walking a 10 minute walk home from nursery takes us around 40 minutes. Up until recently when desperate I have put him in my double nipper and placed his sister in a sling (have 17month twins) however he no longer fits in the nipper and I am fast running out of options to keep him safe.
Is it possible to still get funding for A Maclaren Major for a child with ASD? I have tried to get hold of his HV to ask but she hasn't made contact since January, and is never available when I phone.
You need Triggles. She's just got a major for her 4 yo with suspected ASD and ADHD, I think via an occupational therapist. She'll let you know, but yes, it definitely is possible.
I have one I want to give to someone I am in Preston if that is anywhere near were you live you can have it.
Yes ask hv to refer to OT or wheelchair services. Or paediatric can refer. Just write and ask that's what we did as our hv useless. Can also get crelling harness for car etc. But offer differs from hospital to hospital. Ask about free nappies too if that's an issue, we got those from 4.
Yep. Our OT ordered one through wheelchair services for our DS2 who is 4 (almost 5) years. It has made such a difference for us!!
DS2 is unable to cope with walking other than very short distances. Because his communication skills are practically nonexistent when he is upset, we cannot seem to get to the cause of this. We THINK it's due to overstimulation from everything around him (cars, weather, walking, pavement, other people, noise, and so on), so he just very quickly falls apart - he either sits and refuses to go any further or he literally lays down and "shuts down" and will not communicate or even respond in any way. As he is falling apart, he become nonverbal, clinging, upset, clumsy, distracted.... and it goes downhill very rapidly, within minutes, so it's not always predictable as to when this will happen. We have to keep him highly focused on ONE particular thing - usually some type of verbal game that involves constant reassurance and chatter to him as well as numbers and letters as they are an obsession with him - in order to get him to walk for any distance, and even that is sporadic. He was reaching the point where he was refusing to try to walk any distances outside the house as he couldn't cope and I believe was associating it with upset.
Anyway... we had a long discussion with the OT about this. I specifically requested the Maclaren Major, pointing out to her that he was most comfortable and secure at this age in a pushchair, and that it was something that was familiar to him (as both he and his younger brother have used one), rather than a wheelchair. He is getting too tall/heavy at 4yo for a buggy board and too large for a regular pushchair. And that due to this issue, we were not able to take him to activities and opportunities that other children his age would be able to attend (days out involving walking about such as entertainment venues, longer walks in nicer weather in summer), plus it was such a problem that he was arriving at school ridiculously stressed from the walk to school in the morning which was not helpful for him to learn in school. It also is sometimes a necessity due to his poor impulse control, so that we can keep him safe when we're in a busy or crowded environment.
The OT is required to make sure that this is not a situation where you are looking to make the child reliant on the pushchair or pop him into it all the time so that they get no exercise, as obviously that's unhealthy.
I told OT that this (ironically) would actually allow us to encourage DS2 to walk MORE, as we could bring along the pushchair as a backup, so he knows he has the option to sit in the pushchair if he gets overwhelmed. We could not take him on walks at all, as we were concerned that halfway there or back he would refuse to walk back or get upset and refuse to go. Then we ended up carrying him wherever we were going, resulting in DH having a sore back and myself having a sore back and shoulder. So having the Maclaren along ("giving mummy's handbag a lift" as DS2 says ) means that we breakdown the walk into segments, and give DS2 encouragemend and little rewards for each part that he walks.
I do think that it stood in our favour, that we explained quite readily that the pushchair would be used as a tool to encourage more walking, rather than allowing him to be become dependent on it. We try to do a lot more walking now that we are not worried about having to carry him the rest of the way. And he seems to cope with the incoming outside noises better, knowing that he can go into the pushchair and shut everything out, give himself a few minutes to pull himself together, then get out and try walking again.
The wheelchair services delivered it pretty quickly. 2-3 wks, IIRC. OT told me later that it was fairly uncommon and rarely heard of that they ordered Maclaren Majors for 4yo, but that given our reasoning about being there as a backup so he can actually TRY to walk more.
Okay... read this twice, but very tired... if I'm rambling or don't make sense, please let me know......
Wow. had not idea I put that much.. how embarrassing! LOL
Anyway, forgot to say, the Maclaren Major itself (with footrest) was free. It does come without accessories though. And Wheelchair services gave us their number and said if any problems with it at all, ring them and they will repair/replace it, no questions asked.
oops... forgot to finish a sentence - OT said it was fairly uncommon, but that she saw it's merits and was going to suggest it to some of her other patients.
Thanks for that Ellen and Agnes, at the moment all I keep hearing is Derby is rubbish for providing for ASD children, and so far that has seemed true we were told he should have been entitled to nappies when 3.6 as he is very developmentally delayed but in April but they moved the age to 4yrs so we missed out by 5 weeks. Early years intervention referral was made in November we are still waiting for an appointment. Not that its just children with ASD getting little support but any child with Special needs, staff that were were working with Ds1(dyslexia) and Ds2 (Dyspraxia and now being assessed ASD) had their posts deleted in April. So generally get the feeling things will only get worst here. sorry if that seems like a rant, it has been a long weekend.
Holidaytime that is a very kind offer I am in Derby I would gladly pay and sort a courier, I would get lost probably getting to Preston. Though if he was entitled to one then I wouldn't wish to deprive someone else of your generous offer
Triggles we could be talking about the same child, Lack of communication and lots of sensory issues make walking unpredictable/impossible. Mine also takes to the ground though occcasionally he will run from perceived dangers usually straight across roads.
Message withdrawn at poster's request.
we got ours via the health visitor - I think they just made a referral to the wheelchair service but this was 10 yrs ago +
Message withdrawn at poster's request.
Insanitybecomesme - DS2 is also a runner, and no sense of safety. So yes, he will run (or meltdown or shutdown) right in the middle of the roadway, regardless of any oncoming traffic. OT and I laughed over the irony of a runner not walking.
I have left another message for my HV team, the irony is that DS had a visit two weeks ago to A&E after climbing at home and Landing on his head, Doctor said at the time our HV would need to contact us about safety in the home, did say to him at the time good at least I would get to talk to her, but surprise surprise no contact. If they do not call back today I shall try the G.P.
Triggles That made me I know exactly what you mean normally DS3 catches lots of people out as most of the time he goes meltdown/shutdown, so no one expects the runner giving him a good headstart
Just had a call back! his HV is on maternity leave so they will discuss him at their allocation meeting tomorrow then phone and arrange for someone to come out, she did say that with the funding changes she is not sure that he will qualify for any help. So I guess we shall see what tomorrow brings.
I'd say if the HV says no, go to the OT. The guy from wheelchair services said the Maclarens are donated by the company to the NHS for use, so it doesn't really cost them.
And to be perfectly honest, if he needs it, funding really shouldn't be an issue. In the whole scheme of things, it's not that horribly expensive.
Good luck in getting one. I have one for DS2 (5 and quite tall) and he still fits into it, might be looking for a wheelchair soon though
5inthebed, are you looking for a wheelchair because he's getting too tall for the Maclaren? That's just scary - DS2 is quite tall, and it says it's supposed to be good for up to 10yo. OT asked us if we'd prefer the Maclaren or a wheelchair, and we told her the Maclaren at this point, as the walk to school would be literally hellish with a wheelchair!
Yeah, he is getting too tall. He is 5, but wears clothes aged 7-8 (curses Dh and his 6'4" genes).
I had the option of a wheelchair but wanted the mac major as DS2 was only 2 1/2 at the time.
Oh, I see. Wow - he must really be tall. DS2 is fairly tall, but still far too skinny - he has clothing ranging from 2/3s to 5/6, depending on what the item is and how it fits. Clothing long enough for his legs tends to fall off as he is too slender. And he won't wear a belt - couldn't undo it anyway, but hates them.
Ah yes, DS2 is very skinny. I had to take his shorts in by 4 inches the other day. He is a little spelk.
im waiting on 1 being delivered. sons teacher asked ot to do referral, no issues. got a letter a week later saying the order was being processed and would be delivered in due course. after reading last few comments, now worried that he wont fit in it for long. hes 5.5 and very tall. also have same issues with clothing. most of his trousers have adjustable waistbands, which are good
Grr I just lost a very long well thought out post!
DS has a major and it's been a god send, got it via a referral from GP to wheelchair services a couple of years ago. I am trying to encourage DS not to use it as much now though as like 5inthebed's DS mine is also rapidly growing (he is 6 in age 8-9 clothing and rather tall and rather heavy)! I am not meant to lift him and I am starting to feel it when I'm pushing him now too. Have been using his bike and scooter more for local short distance trips but this is not always viable - in some instances it would be downright dangerous!
He uses it like Triggle's describes - a portable safeplace he can retreat to, or a mobile prison near busy roads or crowds.
Hope you get in touch with a HV, if not try to get a referral through GP like I did. You'll get 'the looks' from people, (they are the same looks you get when he's on the pavement) I've dispelled the high frequency of these by writng on the front of DS's footplate NOT ALL DISABILITIES ARE VISIBLE" works a treat!
The 'look' we know it well in this household, I tend to find they look away sharpishly when I offer him to them for a few hours mind you I also get the 'look' for having 6 dc, then the twins and double trouble comments or my favourite"are they identical" at 17months you would think it obvious one tends to wear a dress/pink and the other shirts/trousers with lots of blue.
I may have to adopt your footplate idea I personally like "I have Autism whats your excuse?"
Join the discussion
Registering is free, easy, and means you can join in the discussion, watch threads, get discounts, win prizes and lots more.Register now »
Already registered? Log in with:
Please login first.