When we go out anywhere, as you may have read in previous posts, we have an uphill struggle before we even leave our house. Two of our children have anxiety around going out, and with pathological demand avoidance and the anxiety led need to be in control, they have to know exactly where we are going, why, who with, how long for, who will be there, what will be there, what will it look/sound/feel like there, what the weather is like, who's idea it was to go, and then, only then, will they decide whether or not they can face going.
Once we get past this point, we then have to actually get out of the house- shoes, coats, jumpers, ipads, DVD etc all cause problems with three children with autism all trying to get their things on. No matter how we try and stagger this, or place their items of clothing in separate locations, giving them plenty of space, this does not get any easier.
Then we finally get into the van. On a good day we have done this without anyone getting hurt, without us having to physically intervene for anyone's safety, and without the whole street hearing that we are going out. On a normal day we have at least one child - usually one of our two with PDA- shouting, stomping about, slamming doors, screaming, crying, being carried to the van screaming, various states of undress as we leave the house and fingernails being dragged across the front door as we leave.
Then we get to where we are going. Parking is a nightmare. With a husband who has anxiety around busy places, finding the right parking space where we are reasonably close to our final destination is a priority, but we have a large van for this same reason, so we need a space where the neighbouring vehicles are parked within the lines, not those where people are slightly over or on the line. We then have three children with extremely limited danger awareness, who we try to navigate through the car park, making sure noone runs off as we get others out of the van. Invariable one of them will refuse to leave the van and time is spent convincing them that they need to leave it and come with us, preferably dressed appropriately for the weather conditions and wherever we are going. We have a special needs pushchair to help our youngest cope with her sensory processing needs and to enable her to cope with going out atall, so that needs to be got out of the van - usually through the side door as the van is long and we can never get to the back doors and be inside a parking space. Whilst we are putting up the pushchair, watching three children don't put themselves in danger, monitoring how busy the environment is, ensuring their ipads are safely stowed away,/held securely checking we have the ear defenders, gum, distractions needed for each of them, checking my husband is happy and coping and running throught the mental checklist of blanket, raincover, sunglasses, sensory bag, purse, phone, hand gel, dummy, cuddly toy, inhalers, tissues, snacks, drinks etc etc there is invariably someone waiting impatiently to squeeze into the car next to us. By the time we actually get anywhere we are ready to go home again.
If we are going outside for a walk then we also take our little dog with us - not so much for her to have a walk as she isn't generally interested- but so she can sit with our youngest in the pushchair for support, or so our eldest can carry/walk her which keeps him focussed on her, distracted from everything else and relatively calm.
Our eldest daughter is the most likely to wander infront of moving traffic- and has done so many times. We generally have our youngest hand in hand if she is able to walk, or in the pushchair, our eldest is usually next to me, but our eldest daughter has to hold a hand or hold the buggy to prevent her wandering off whilst in her own world. She has wandered infront of cars whilst counting kerb stones before now, only stepping on white lines of the zebra crossing led her into the path of a reversing car, she doesn't even realise when these things happen, just gets pulled back by me and then looks at me as if it was my fault. Patterns distract her so much it truly is a danger.
When any of them have too much sensory information input, or when people expect too much from them (because they all look 'normal'....yes, I hate that word too but here I feel it best describes how people view them and how that affects their expectations of them) then this comes out as escalating behaviours if we are lucky, or straight to a meltdown/panic attack, at which point we need immediate access to the van when we are out in order to allow them chance to de-escalate, or ride out the meltdown, which usually ends in exhaustion for them (and us) so they need somewhere safe and familiar to help them.
I applied for DLA for all three children before they had been diagnosed, and before we had a full understanding of all of their needs and behaviours. I need to revisit this application for our youngest, as her care needs and mobility needs are increasing, and are easily explained within her reports from her psychologist and occupational therapist. I am not sure how to do this and need to bite the bullet and find out.
Today though was our interview following my application for a blue badge for her. I am under no illusions as to the liklihood of us actually getting one, and am fully expecting to have to appeal the decision not to award her a badge, but had to try anyway. I truly do feel she needs one, and the recent news that the government is reconsidering the procedure for awarding blue badges to people with mental disabilities and hidden disabilities couldn't come soon enough.
The lady we saw today couldn't have been less helpful. She had no interest whatsoever in anything I had with me- reports backing up the need for my youngest to have regular movement breaks, her demand avoidance, anxiety, sensory processing difficulties, statements from professionals acknowledging her difficulties with going out and walking. All she seemed interested in was trying to get my daughter to say hello, then goodbye to her. As if that was going to happen! She was so anxious about going that last night was a real struggle, let alone being able to speak to the woman who was as dry as the dessert.
The space on the form to write the information on when she cannot walk, why she cannot walk, and why we are applying for the badge was no more than five lines long, and this lady had big writing. I understand that people with physical disabilities may not need much space on such a form, but there are thousands of people who have problems walking any distance, or at all in many situations, who need a lot of information noting down surely.
She wrote in the even smaller box for additional information, that we can park in mother and baby spaces! When I pointed out that these are few and far between, and often full and not in every place we need to go, she said that she didn't know as she has never needed them. This compounded my gut feeling on sitting in her office, where her lack of humanity and empathy were palpable, these jobs are literally given to anyone.
We have to wait a couple of weeks to hear a decision now, and I checked with her that there is indeed an appeal procedure, fully expecting to be turned down because physically she can walk, even though she can't. I honestly wish that the changes would hurry up and be approved throughout the UK to help families in positions like ours.
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