Getting the right set of wheels (paediatric wheelchair vs special needs buggy) from wheelchair services

For those that read the blog, you will know that dinky was referred to wheelchair services due to the problems created by her ASD-PDA.

We were having issues with refusals to walk due to the demands and anxiety, limited road safety awareness, and issues with running off public transport before the correct stop!

Dinky had an assessment with wheelchair services, where it took 3 of us to get her into the room to be measured, and the 30 minute appointment took 1 hour. Dinky struggled with the measuring and it was agreed that there was a clinical (not physical) need for a product from wheelchair services.

So we received an appointment to come back and be fitted for a chair. Apparently she was too old for the Maclaren major elite

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This is due to the buggy being deemed inappropriate for children over 5.

So when we arrived at her second appointment she was prescribed an action 3 junior wheel chair

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(But with pink not red) Again the appointment did not go smoothly, dinky refused to get in it with the lady there, she had a massive meltdown almost tipping over thousands of pounds worth of hoist, throwing chairs and hiding in the storage cupboard. Eventually it was fitted in a round about way and off we went.

Straight away her verbal stimming at the bus stop was looked on sympathetically and not as an annoyance!
There have been very few meltdowns out due to the reduction in demands of staying next to me, and waiting ect, she can play her iPad on the move with a play tray.

The only problem is… It is VERY medical looking. Firstly we have had people we know ask “what on earth happened to her?”. Which neither Dinky nor myself appreciated very much.
Also when Dinky has gotten out of her chair we have had some awful reactions from the ignorant masses.

So I have been trying to get something in between. On my search I found this…

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There is a slightly more expensive version called the convaid, but I like the Trotter as a good half way house for only £299.

So I called the wheelchair services, the person on the phone basically said it was tough luck as the wheelchair we have meets her clinical needs.
So the social worker said there are charities to help.
I went to newlife foundation, who said they could help but I have to have exhausted local NHS avenues first.
I spoke to a lovely man from chariot (www.specialneedspushchair.co.uk) about the Trotter so I could see if it was suitable, he told me about the independent wheelchair voucher.

I was apprehensive as I didn’t want to make a fuss, that was until an incident at the post office where we had an awful experience which wouldn’t have happened if we had the trotter.

So I wrote a letter to the wheelchair services.

My main point was

If the perception that the Maclaren major is not age appropriate due to the ‘look’ of the product, then the action 3 junior, is also not appropriate due to the medical ‘look’. It is the ‘look’ of the chair which leads to the belief that a child sitting in the action 3 junior is physically disabled with severe mobility issues.

The range provided does not take into consideration the needs of children with complex neurological conditions who may need a chair to travel in.

I did say that other parents of autistic children have the convaid or the trotter.

So Monday I got a phonecall while dinky was out at the farm with her SN group, they are willing to issue a voucher but the stipulation is that they have to see Dinky in one before they would issue the voucher. She gave me a list of mobility shops using the voucher scheme, the value of the voucher would be £348.
Phone call after phone call and none stocked anything similar to the trotter. Most were put off by the stipulation that they would have to source one and possibly not be paid for it if the wheelchair therapist didn’t deem it suitable.

We had no answers by the time dinky got back at 3.30

Tuesday (yesterday) I was on the phone again to companies, trying to find suppliers myself. I talked to suppliers in the north, and the company that provides the LA hospital equipment… no luck… I had one shop willing to get it in and test in instore- but! Because they changed their name they are not on the voucher scheme list, and they could get the chair… For £525.

I phoned wheelchair services back and I must have got through to the same unhelpful person I had spoken to before who again said the chair we have meets the clinical need so the offer made is the best we are going to get.

Not happy at the ‘like it or lump it’ approach, I phoned PALs.

I explained the predicament, and was told to leave it with them.

Today I have had 4 calls from wheelchair services, and the last call was to say that the chair would be sent from chariot (specialneedspushchairs.co.uk) to trial early next week, but I would need to pay £110 for the rain cover and the canopy which is shaped to provide a feeling of a safe space, good for sensory issues. Which is fine by me definitely better than the shortfall of £200 before accessories from the local shop.

So PALS were definitely the way to go, and we shall see next week if Dinky can have the chair! This opens the door for other children in the area to ditch the action 3 and get a special needs pushchair for their autistic children!

A fight well worth it… But unnecessary as in the end the wheelchair therapist actually sorted it… After PALS were involved.

School news and social care

Today was my meeting with the head of admissions to the special school that the LEA have agreed to fund for Dinky.

First I had to tackle dual carriageways and busy roundabouts in the instructors car!

I got to the social workers office and waited, then the head of admissions came in.

I didn’t know what to expect, so I imagined a guy in his 50’s, stained jacket, slightly more ‘rotund’.
The man who introduced himself was slim, mid to late 30’s, dressed sharpish, so completely different to what I imagined!
We had a quick chat before the social worker met us, he asked if I was local and we talked about travelling around the local areas.
The social worker came out and took us into an interview room.

We sat down and the head of admissions said really he just needed to go through a booklet about Dinky.

So we talked about Dinky.. The social worker made a point saying she needed to be in school ASAP, however it seemed too overplayed, like she really really wanted it more than she wanted anything to help us. It did cross my mind that she just didn’t want to have to request 9 hours 1:1 for Dinky every 4 weeks because I annoyed her boss!
We talked about Dinky on a bad day, and I made a point of saying she does bite, much like the time the social worker came to our house and set dinky off.
we then talked about her PDA, her sensory issues, her speech and language profile… I explained her behaviours that he had seen reported, either unfairly, or that didn’t tell the whole truth. Like the time she head butted the head of nurture, and the time she head butted the girl who kept picking on her. I also explained that although I was telling him what she was like in mainstream, he had to remember that these were teachers with little, to no understanding of Dinky. A lot of her issues at school could have been avoided by using the right techniques and with properly trained staff.
I told him I had no issues with mainstream just those that didn’t listen. That dinky was portrayed at naughty, and refused to admit she was autistic.

He was very good about it, and explained that he understood.

The social worker was banging on again about the importance of a start date as that is all we really want. Again this got to me as she was very enthusiastic, which she hadn’t been to that point.
Of course I want a start date, it is really important, but so is them getting an idea of dinky.
He phoned the office and got us the dates for the assessment/familiarisation period. 18,19 and 20th November. I was happy and the social worker said she would get on to transport to get it in place for the 3 days. Again she pushed the start date. He said once the 3 days had been done, he would get our LEA the report with the formal offer of a place and costing by the Wednesday after, then as long as funding was arranged, the earliest she could start would be the 1st of December, but that it would be down to the LEA, so I said “January then!”. The social worker gave me a look.
She asked something about the process and he said he would put in a rough costing to the LEA, he can see Dinky will almost definitely need 1:1, so that would be the high needs package- £81,000. I winced and let out a gasp. That is A LOT of money! However, like I said to them..l if it is what she needs I don’t care how much it is!
He asked if we got any respite, the social worker opened with ‘well.. Erm’ she seemed like she was struggling to get it out… So I told him that Dinky is too complex for aiming higher/ short breaks, but we don’t qualify for CDT, so we get 9 hours funded by social care-ONLY because she is out of school! As soon as you can get her in, then it seems social care won’t have to foot the bill.
The social worker again tried to make it look better, but gave up.
Then there was the question then of the social workers involvement and the child in need plan. So we discussed the ‘over sexualised behaviour’ and again I said it was funny how social services weren’t helpful before but that this added weight to their claims of Dinky’s behaviour and to peg me as a bad parent, but it is funny how this is an isolated incident, the likes of which, had never been seen previously or after by any organisation or person who has contact with Dinky.
He asked why child in need, again trying to say the involvement was due to the schooling issue, I said that was rubbish, that dinky is technically a child in need under section 17 of the children’s act 1989 due to her disabilities!
I got the impression she was a little put out, and to be honest I didn’t care.
I did apologise to him, as it was a sore subject as Dinky has been out of school 9 months. He said it was ok.
We talked a bit more about Dinky and the therapies ect they have. Then he left, saying he would email the LEA on Monday and that the dates were booked for the assessment.

The social worker asked me if she could have 5 minutes to have a chat.
I can’t remember exactly how it went because I was annoyed and tired.

But the gist of it was explaining that I was tired, Dinky is exhausting, she has been out of school for 9 months, and that 9 hours hasn’t been enough considering that I don’t actually get a rest during the respite as I do this.. Go to meetings, do my driving lessons, write emails, make phone calls ect.
That this was another one of those times where I’m struggling and need more support with dinky but don’t have friends or family who can/will help.
I said I was annoyed that Dinky was too complex for some practical help, but not complex enough for others. There is very little in-between and that is where social services need to help. However it feels like they just want her back in school and to reduce the hours.
More delays on the parent carer assessment, finally it is noted that if a parent struggles the kids struggle, but still no more practical help. I understand you have to have a meeting, to discuss the meeting, before the pre-meeting to discuss who should attend the meeting, of the meeting.

I just want what would help us, I don’t want more than what we need. A couple of hours a week once she is in school will help, and some flexible support when things are tough.

I was pretty annoyed and said a few other things about how the system sucks and is full of holes that people fall through.

I’m tired so I’m going to leave the post there…

It was positive and I’m glad things are moving forward…but I can’t be really happy until Dinky has a uniform on an is IN school.

Invisible disabilities week 19-25th October 2014

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Sometimes it seems every week is another awareness week, or day.

The invisible disability is something I feel needs more understanding.
Whether that be PDA, ASD, ADHD, PTSD, Fibromyalgia, IBS… And countless more.

The way society views disability, actually disadvantages those with hidden disabilities, not only that, but also the negativity spouted about something people don’t understand is staggering.
People are more set to judge than wonder ‘what if?’

The hidden vs visible disability is something us parents of autistic children understand all too well. (And before the PC brigade come in… Yes my daughter is more than her autism as are the other wonderful people who just happen to have an autism diagnosis. But according to autistic people, they prefer to be called autistic people, it is as much a part of them as their other characteristics! So I shall listen to those whom I wrote about and address them as they prefer- and I know not all autistic people like to be referred to as such, but honestly I can’t please everyone and still get my point across!)
Some more classically autistic individuals do have the outward appearance of having special needs, and they have a visible disability.
Take a lad that we know, his mum even said that it is madness that her son and Dinky have the same condition- autism- yet can seem so different as he is 9 and has classic autism, he constantly moves his head, flaps his hands or clicks his fingers, is completely nonverbal and still in nappies. She recently. commented on the fact that while she was visiting the local inclusive play centre, she saw Dinky with her 1:1, dinky was having a meltdown and someone else said she was too big for tantrums. She talked to the staff and told them, the staff then talked to the other parent explaining Dinky is autistic and that she isn’t naughty, or tantruming. She told me that when her son has a meltdown people are much more understanding because everyone can see he has special needs.

We have this quite a lot when out, people tend to have a narrow view of autism. How can a 6 year old verbal girl have autism… Easily, try having a conversation with her and see how far you get. Put her in a group of children her age and watch her struggle to play. Leave her to play by herself with her iPad and listen to the ‘everything is awesome’ lego movie song on repeat while she lines up her lego keyrings or playing disney infinity and not being able to move past freezing things over and over again as if stuck on some kind of loop.

Autism is more than just verbal ability and self isolation. The triad includes difficulties with social interaction, social communication and repetitive and restricted behaviours and interests. Dinky has, what was remarked on as, moderate autism due to the level of difficulties she has in these ares.

People just don’t see it.

The PDA part of her autism is the most misunderstood. Only a few days ago I was on the phone to the disability living allowance people regarding her claim, it is very difficult to get them to understand that her avoidance is not a choice. Pathological means compelled to… She can’t help her avoidance, pathological also means ’caused by disease’. Obviously the medical world is blunt and unyielding, as is their terminology, however pathological is correct.
If there is one thing I do have some understanding of when it comes to Dinky’s PDA, it is the anxiety and avoidance. How? Because I have PTSD which is an anxiety disorder. The very reason for my PTSD I try and avoid talking about, thinking about doing anything about and that is part and parcel of the condition. Of course I can’t know how it feels for people to think what she is avoiding is silly, as most people would find avoiding the worst memories of their lives quite a sensible thing to avoid.
However trying to convey this to someone who works for a government agency is a little harder. It always sounds like an excuse for Dinky getting her own way… However they don’t live with the extreme that is PDA.

Another problem with a hidden disability is perception… (And I’m not immune to this issue!) Let me explain…

Dinky was referred to wheelchair services, initially it was for a special needs buggy, a Maclaren major. However Dinky was just over the 5 year old limit, and so she was prescribed this…

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To them it suits her needs. It has 4 wheels and fits her perfectly. Sorted.

I however wasn’t sure… It is very ‘medical’- meaning I felt very uncomfortable with the notion that others may think she can not walk at all. However if you’ve ever had to move an autistic child in meltdown who is refusing to move due the demand of walking, you may know why we need something on wheels to actually go anywhere!

So when Dinky did get out of it at soft play, I felt the people behind us gawping in disbelief, like it was a miracle. Heard others saying she shouldn’t have a wheelchair if she can walk, and other very ignorant things. When dinky had a meltdown on the way out of soft play people couldn’t understand why I wanted to get her in the wheelchair if she could run around and play. They couldn’t understand why this kid was kicking off. Apparently the word ‘Auty’ printed on her t-shirt wasn’t obvious enough as a link to autism. Another parent came over and told Dinky off for hitting me.

Right then I had my own mini meltdown, I cried (which I do not often do), and told them to leave us alone, that dinky is autistic.

Dinky at this point was hiding under a table, shaking and refusing to come out.

Later on that day I had my own hidden vs visible disability moment.
I was annoyed at the chair she had been given, had it been a special needs pushchair then there wouldn’t be as much negativity and ignorance about her walking and needing a set of wheels.

Then I saw a young person, maybe 13/14 with Downs Syndrome in the same chair, but a larger version, and it took a minute for it to click in my head that him having a visible disability, meant I knew he could probably walk but it was acceptable for him to use the same wheelchair I wanted to hand back… And then it hit me that it is society that understands visible disabilities more than hidden ones, as the level of acceptable (which is a societal concept), is what you can see. Looking at the two children using the same equipment is different as I am made to feel like a fraud for Dinky using the chair, for a hidden neurological condition, but a condition with a physical appearance is fine.

I still want to change the chair. Sure, I can grow a thicker skin like I have (mostly) with her Autism-PDA and people’s ignorance, when it comes to it, but for once it would be nice not to NEED to do so.
This is why I have a collection of ‘Auty not naughty’ clothing for her, because I feel the need to make it known she has a disability. Dinky may not always pay attention to what is going on around her, but she can feel the stares and negativity from others, as can I. It is so hard when people make the wrong assumption about your child. I love Dinky, and think she is utterly amazing, but for people to assume she is a brat, or that she is purposefully naughty… That hurts, they have made a split second decision about a wonderful child because of the uncontrollable aspects of her disability. (That is not to say she never just misbehaves like most 6 year olds, because she does… But she is not a naughty child.)

The other side of this is- when Dinky is in the chair and not getting out to run about at soft play, people treat her better, they avert their eyes when she rocks or is engaging in her vocal stimming- rather than staring and people are more polite and understanding in general. It is quite bizarre. As in the same town with out the chair on the same bus route at the same time she becomes a spectacle, a talking point and an annoyance for her rocking and vocal Stimming.

The difference a chair makes!

As a parent it is heartbreaking having a child with a hidden disability.
I have seen lots of ‘look past my disability to see my ability’ or hear people say people think their children are not able.
Dinky has the opposite problem, people expect too much from her, they don’t see her disability and only expect a level of ability she just doesn’t have because she has one aspect- verbal ability.

Because she can communicate verbally most of the time, people don’t see that her behaviour is also a form of communication. Especially when she finds it difficult to verbalise her thoughts, such as in times of high anxiety or stress. Then people wrongly assume that it is chosen behaviour.

Just because she is verbal doesn’t mean she understands what other people say to her, or even what she says half the time.
It also doesn’t mean she can communicate socially. It only means she can physically talk.

As always these posts don’t always flow or even make much sense, I blame the sleep derivation! But I hope I have shed some light on how it can be having a child with an invisible disability.

Psychological Damage Caused By Using Government Disability Support Services

dinkyandme:

I don’t think I could have put this any better myself… It is how I feel…

Although I am prone to the odd meltdown of my own at services… Which lost me our county autism support service and got the school saying that I am ‘very strange’ to social services.

But the truth is it is impossible to be perfect all the time.

Originally posted on Autism & Oughtisms:

Before I was a mother of an autistic child, I had certain presumptions about the services a family like mine would be entitled to. I thought mothers who had to quit their jobs to look after their high needs children full-time would get a benefit that would cover basic expenses, similar to what you might get from an unemployment benefit. I was wrong. I thought schooling support would be automatic and cover the child’s basic needs. I was wrong. I was wrong about a lot of things, and yet somehow it still manages to surprise me when I encounter major short-falls in a system that is supposedly in existence to help the neediest members of society. This post though is not about that short-fall in itself, it is about the damage that gets done to those who have to access and navigate the system, in order to squeeze out inadequate…

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