Blue badge application

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.

Behaviour

the word brings to my mind the years of parenting courses, sticker charts, pennies/pasta/post it notes/tokens in the jar, monetary rewards etc -none of which have worked for either of my children with PDA.

So, last year, in pure desperation I started writing everything down in a notebook to try and identify any patterns and triggers. It is the best thing I ever did for them.

I took it to Camus and they laughed dismissively, but now I am asking for physical intervention training they are taking it more seriously.

I see lots of posts from parents on social media in the position I was in last year so thought I would share a rough outline of what I did.

Of course, once I looked back and saw patterns and triggers, I used pda strategies to minimise these triggers, minimising the behaviour escalations we were having here, which has also meant any meltdowns we have tend to be shorter. To help you at this stage I recommend the pda society for strategies, and the explosive child book.

I know it feels like a lot of work when you are exhausted, but it has made things so so much easier for us all I fully recommend doing this.

Treasure trail

A few weeks ago, under the strong influence of flu, and missing being outside as it travelled through our family, I found out about Treasure Trails online. Still being relatively unfamiliar with our local area, I chose a few of these trails in various local places, ordered them to be posted to us, and have been waiting for an opportunity for us to try one of them out, well aware that this would mean getting all three children out of the house at the same time, and staying out for some time as the trails vary, but are mostly around 90minutes long apparently.

Today was the day- misty, slightly damp with the odd drizzly attempts at rain, we ventured out to a nearby town which is known for being dog friendly, looks appealing and is full of local produce with an unusually bustling town centre.

We were well prepared for this. Once we had faced the battle of our eldest leaving the house (his turn today), had the dog ready in her coat and harness, had the special needs buggy with it's raincover, footplate, sun cover and rain cover ready, had all three ipads with battery, charger, downloaded choice of programmes, coats, boots, gloves, pencils, ear defenders, dummy, drinks and the actual trail itself, off we went.

We managed to park in the narrowest space possible- quite how they expect people to exit a vehicle in these skinny spaces without touching the neighbouring car is a mystery of its' own. As it was, we did the usual of emptying the contents of the van quickly and assembling it all in the car park before fully reversing into the space. Thank goodness for sliding doors!

As I was busy trying to strap our youngest into the pushchair, secure the ipad, dog and raincover, the people from the car next to us returned. I quickly scooted the pushchair over to allow them plenty of room to get to their boot, but they just stood there staring at us. No emotions or words evident, just out and out staring at us. I chose to ignore them both and carried on making sure my daughter was safe and comfortable. We then had to wait for them to stop staring and get into their car before we could open our sliding door for our other children to get out. Part of me willed them to open it and hurry the people up, but I am glad they waited.

The trail itself is an A5 booklet with many clues and directions inside, with the aim of identifying the murderer and their weapon of choice. If you get stuck at any time you can text a free number for help up to three times during the trail. When (or if) you complete the trail and identify your culprit then you enter your details online and they tell you if you were correct or not, as well as giving you all the clue answers.

Some of the clues were straightforward, others more cryptic in nature (not my forte). Once we got into it things became easier, as it led us through parts of the town we would never have found without the trail. At times, our son was able to take control and lead the way which helped reduce his anxiety about not being in control of being out, which in turn made things a little easier for us all for a while.

We spent three hours walking around the small town centre, looking for clues, numbers and names that people wouldn't even notice without this goal. Our little dog managed to walk for a total of around a minute in all, preferring to be carried or riding in the buddy with our daughter. It reminded me of the struggles of an old style town centre, with pavements cluttered by advertising sandwich boards, tables and chairs, and people standing there for a chat, oblivious to the pushchair coming their way- I had this exact experience when my eldest was little and we lived in an old cobbled town where it was safer to walk on the roads than on the pavements.

When our anxious son was carrying the puppy he was visibly more relaxed, even commenting himself on how she was keeping him happier (and warmer). A sneaky pasty was needed at one point to keep him motivated, but £1.60 is well worth avoiding a hangry tween with PDA who did not want to be out any more and was teetering on the edge.

Our aspie daughter loved the clues and the routine and ordered nature of the trail, a lot of it was beyond her years, but I was able to simplify things for her to be able to solve clues and spot answers we were searching for.

Some of the trails we have left currently are spy trails and I can't wait for an opportunity to try our next one- although I am not so sure about the enthusiasm of everyone here.


Incase you are interested- we did get the answers right in the end, and rewarded ourselves with a visit to an old style sweet shop. We are the proud owners of a certificate showing we completed our first trail.

Know your stuff

It hit me this week after a meeting with a range of professionals, talking about my children, with the sole purpose being my request for respite.

They are all so used to dismissing us parent/carers that the only way to stop that is to argue, but argue knowing your stuff.

I was prepared for this meeting- I knew, from the last one, who was going to be there, and what their agendas were. I knew exactly what we need from each of them and researched all the jargon, terminology, our rights, purchased a printed copy of the SEND code of practice, had been in touch with relevant charities and ordered materials relevant to our needs. As a parent this is not for me to do though. Their role, as professionals there to support my children holistically, is to use the resources at their disposal to support them. They do not.

You have to know exactly what you need, what it is called, what jargon is involved and what service is commissioned to deliver it.

I had plans and reports ready for inspection should they wish to see them, stood my ground when they tried to put me off with the usual.....

We aren’t commissioned to.....

We would look at your ideas.....

Parenting programmes......

It would require a huge commitment by you......

They are reluctant to.......

Are you aware that.....

I didn’t say that, what I meant was......

It is a long process....

I see you are anxious about......

You know the drill, you will have heard it yourselves no doubt.

I am no expert in meetings or dealing with beurocratic lies, but I am an expert in my children and what they need. My best advice to anyone is to be heard. Don’t nod and accept what is being said if you see it in this shortened list above, or if you know it is not true. You are the best advocate for your child and they need you to be strong, prepared and answer back (politely) to these professional brush offs and ask persistently for what you need for them.

Please do remain polite and respectful, even though you may well be screaming inside as no one is listening. Being rude will get you written off as a difficult parent.
 When they call you anxious they are mistaking anxiety for strength and knowledge they don’t want you to have. Don’t worry, just fight for what you need.

Then scream and sing really loudly in 5e car on your way home afterwards (waiting until you have left the car park)

When the wheels fall off

Resistance to change


Poor social imagination


Rigidity of thought


Then....flu!

As the main carer givers, to catch flu and be bed bound for a week has been soul destroying. Not only is it against my normal daily routine to stay in bed for a prolonged period, doing nothing, but it is also cause for a gigantic change in routine, predictability and pulled the rug out from all three children, with awful results all week.

Having no energy to be able to negotiate endlessly about every part of every day and night, not being there in person to follow them around as they face problems throughout the day, having to cancel all plans for an entire week, for all three children, including things they were looking forward to, seeing how my being unwell stressed them even more, all made this flu so hard to cope with.

It brought home to me a number of things, namely...

We truly are alone. No one is here to help us when the wheels fall off, we have no one who can or will take the strain for us and help our children

Although I knew our daughter with aspergers/high functioning autism needs a routine of sorts, and predictability, I saw how the other two children, who have pathological demand avoidance and therefore see routine and predictability as a demand, actually struggled when there was none at all.

So I have decided that I need to look after myself more. I am not sure how yet with all our money tied up in repaying debts and paying for specialist activities for our children, and all my time spent caring for them all, but maybe I will find something active to do, outside of the house (I am not counting the trampette, bike or yoga we do here when I can). Watch this space.


One more thing:
To all those who, like Nicole Kidman, think it is clever to go out to public places when you have flu, or any other highly contagious illness....shame on you. You are selfish, causing harm to others without any care. It is no joke for us carers, those with lowered immune systems, those whose carers become ill thanks to you, those who have no one to look after them when they are ill. You should be ashamed of yourselves.
I have never understood people like you, the ones who turn up to an activity for children, stating how sick your child was last night, who go to a soft play area with your unwell child so you can have a break, who go to the cinema when you are ill.