Invisible disabilities week 19-25th October 2014


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…


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


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…

View original 916 more words

Harry Potter studios with Dinky and mate

Yesterday morning was the morning I was taking Dinky to the Harry Potter Studio Tour with her mate (who also has a diagnosis of ASD, but also ADHD and other issues) and his mum.

The morning was going fine, I managed to have a bath in peace as dinky was watching Netflix with breakfast. I was just about to print off the tickets when my iPad turned itself off and then on again, so I tried again, and it did it again. I tried on my iPhone, it was doing the same thing. Couldn’t be a problem with all three? I asked Dinky to get her iPad and sure enough it was turning itself off and on again every minute or so. I tried to reset them, I tried to reset the settings, Dinky was screaming about her iPad and was throwing stuff and having a meltdown.

Maybe update was the answer… So out came the laptop and two devices were plugged in. Nope, they weren’t staying on long enough to download the file to update.

Out of ideas I tried to get onto Apple, but Sunday morning they didn’t want to know all I got was call back during office hours.

Helpful when you are about to embark on a 60 mile trip with 2 autistic children to a place they have never been to before, which will have lots of people there… not!

I was frantically searching for someway of getting an answer to getting the problem fixed. Online chat! YES! So I tried to get through to a person on the chat, I tried putting my phone details in but it didn’t like that, nor Dinky’s iPad, but I got through on my iPad.

I got a lovely “Hi my name is ASH how may I help you today?”

I explained the predicament and he was baffled! He said he has no idea why all 3 of the apple devices were doing this at the same time having all worked fine and been used that very morning. He tried all the things he could but nothing worked. I phoned my dad off my landline and asked him to come and walk the Dog as Dinky’s mate was going to arrive in 30 minutes and we were not ready as I had been massively side tracked by the crazy Apple devices.
He arrived just as they did so it was a bit of a rush getting everything and everyone ready. Dinky had her 2DS and my dad brought his ipad, but it had no Dinky friendly games so I downloaded a couple while the other mum had a cigarette.

On the way there the kids were very good, Dinky got a bit upset, she wanted her drink but it had accidently gone in the boot, but that wasn’t the real issue, she was upset because she wanted her iPad, my dad’s iPad just didn’t have the games she wanted to play, but apparently the error was enough for Dinky to say “I want to punch you in the face”- she loves me really! Then there were a few little disagreements between the children as they had somehow made it into a competition over how many angry birds games they had.

How people manage to drive anywhere on a daily basis with more than one child is beyond me, I remember being just as bad with my siblings regarding the games and the competitions!

Once close by, we went in search of a mc Donald’s because we had got there a little early (which made me feel better as at least the issues hadn’t caused us to be late).

We found a drive through in Watford. Dinky didn’t want to get out of the car because there was a man using a high pressure washer, cleaning the car park area. I had to ask him if he could please turn it off for a minute so that Dinky would get out and go into the restaurant. He did, and we went in. The kids had been in the car for a while so it was no surprise to me that they were a little hyper, although when they both stood up on the benches, we got the usual looks of major disapproval and mutterings of out of control children.

Once they were eating they were better, until Dinky’s friend called Dinky a baby. Dinky was not impressed as she was 3 months older than him and she was 6 and a half, and 6 and a half wasn’t a baby, it meant she was a big girl. Knowing he was annoying her he pushed a little more, so by this point Dinky had enough. We got them back in the car with the balloons that were handed to them despite on arrival me shaking my head when the lady tried to give them one each, but they ended up with one each anyway!

In the car and back to the studios, the other mum mentioned to the car park attendant that we had a wheelchair in the boot, and he directed us to the disabled parking right in front of the building. Which I must admit was great, especially as we got the pair of them out and Dinky got in her wheels, and her mate got into his Maclaren major, next to the car as there was plenty of room to sort them out away from the traffic.

Some photo opportunities before we collected the tickets, as I queued an assistant came over and took me to the machines, I showed her Dinky’s diagnosis letter to prove we were eligible for the disabled child ticket and free carer. She noticed the autistic spectrum disorder and told me that if I went to the information desk, they would let us in the side door rather than stand in the queue.

We got the digital guides, although I wish I hadn’t bothered as I didn’t get to look at mine once and dinky didn’t like the headphones, then headed to the information desk. We were taken into the big room, then the queue door opened and people piled in. Dinky was NOT impressed! She was shouting and saying she wanted to leave, she kept saying “Strangers”. So I tried to calm her, but I was fighting a losing battle as the tour person for this part was on a mic and was asking people to shout about how excited they were… not exactly dinky’s favourite part of the tour!

We then went into the cinema. We were told to sit either side of the aisle but other people obviously felt they needed those seats more, Dinky was in the aisle, but her mate was sat in front of a seat. Again more trying to rev up the crowd with shouting. Neither child was impressed. Then there was a short film, followed by, yes, more revving up the crowd by getting people to shout.

We made our way into the ‘great hall’.. I was in awe. I am a MASSIVE Harry Potter fan so this was an amazing experience for me as well as Dinky.

Thankfully the last bit of audience participation shouting and we were free to do the tour at our own leisure. I had forgotten my camera, so I was using the other mum’s camera. Taking pictures of just about everything, dinky was not impressed with that either, she kept rocking in the wheelchair pushing herself into me and moaning that she wanted to see something else. It was amazing to see all the props and how things worked.

We got to queue jump the broom riding, which was much needed as the pair of them were not in a waiting mood (not that they ever are), Dinky LOVED the broom ride.. she was giggling the whole time and the people who could hear her were all saying how wonderful it was to hear a child so happy. I got my turn- I had to.. I couldn’t go to the studios and not have a go on a broom! Dinky’s mate and his mum also went on, he didn’t seem to really enjoy it as much but the mum did, also being a big potter fan!

We went to pay for the pictures and I almost had a heart attack, we hadn’t even made it to the gift shop and I had spent enough! I got the dvd of Dinky on the broom because it was amazingly cute, and a few of the pictures-which are now displayed in the house!

We went round looking at all of the bits, at points Dinky wasn’t impressed and was whinging, she liked Harry Potter but didn’t see the point in looking at some of the things, whereas I was in my element!

We got outside and Dinky knocked on number 4 privet drive, rang the bell on the knight bus, tried (and subsequently spat out her) butter beer, ran across the bridge, sat on hagrid’s motor bike, sat in the weasley’s flying car and saw some of the giant chess pieces. It was brilliant!

We went on through the tour, Dinky loved the animated monster book and the wax figures of Dumbledore and Dobby, but hid under my hoody from Aragog! She liked buckbeak and both kids and adults were so excited about going up Diagon alley! (Which was a nightmare with the wheelchair and Major! as it was the cobbled path)

We stood in front of all the famous wizard shops- gringotts bank, quality quidditch supplies, olivanders, and so on!

The model of Hogwarts was absolutely amazing! I can not put into words the feeling of seeing it there. It was amazing! Dinky didn’t see what the big deal was and tried to take her breaks off and roll down the ramp!

Then that was that… we went into the gift shop… It is safe to say I spent WAY too much money on the Harry Potter Studio Tour, but I don’t regret it as for once I actually treated myself and Dinky.

The staff were AMAZING!!! Really helpful and understanding!

The journey home was going ok until we were at a standstill due to an accident on the motorway. The kids were bored, Dinky’s mate when bored and his medication wears off is a bit hands on and just grabs stuff and chucks it. So Dinky’s toy and something else were thrown into the boot. Dinky wasn’t much better, although a lot less hands on and not touching his stuff, she was making noises and saying stuff which annoyed him.

We got past the accident but were still moving very slowly as the motorway was restricted to 2 lanes and no hard shoulder, we found that it was a broken down car.

Again, STILL not moving very fast, and then complete standstill. By this point Dinky was happily playing with one of the electronic devices but her mate was really not happy, he was pulling at Dinky’s headphone wire, pulling at her chewigem which was on a ribbon clipped to her jumper and not the removable clasps, and putting his hands on her. Which annoyed her and was causing arguments, of course, the things Dinky was saying was making him worse.

We got past the accident which caused the delay and we were nearly home!

Finally we got back! I know that had we not been REALLY unlucky (although not as unlucky as the poor people it happened to- fortunately no one was injured in the accidents as they seemed to be cars that had gone into the back of the one in front and no ambulances were present) to be stuck on the motorway due to 2 accidents and a broken down car, we would have got back before the kids began to really struggle.

My dad sorted out a quick dinner for Dinky and walked the dog while I sorted out all our bits. Dinky then went to bed.

My iPad had sorted itself out by the time I got home, my iPhone is now working this morning, but typically Dinky’s iPad is not working properly still, I am not braving a trip in the rain to the iStore, just yet, if it is not fixed by lunch time we will go down.

Special school referral and special needs group

Thursday was the day Dinky’s case was going to the placement panel to decide whether or not the LEA would pay for a place at the school. I don’t know why, but I always feel like they are going to turn around and say “She doesn’t need a special school, stick her back in mainstream”.

I am the MOST impatient person I know! so Thursday at 4.50pm I phoned the LEA for an update… They were still in panel… I was told I would get a phone call Friday (yesterday). I had my driving lesson in the morning and then my impatience got the better of me, I phoned and was told the manager was in another meeting.

So I waited for lunch and phoned back. He picked up! He said that he did have a note on his desk to phone, but he did recall me telling him I was very impatient. Thankfully he said it was ok. He then proceeded to give me a load of spiel…

“As you know we took the case to the placement panel and we had two options on the table, X school, and Y school. We know you had concerns about X school and we were also concerned that it is a long way for a young child to travel to. So we discussed Y school…”

By this point I wanted to reach down the phone, shake him, and say “JUST TELL ME ALREADY!”

“.. the panel agreed that Y school seems a better fit, they were not involved in the DPS (Dynamic Placement scheme- basically the system used to send out a profile of those in need of a non maintained/ independent special school) so that is why they had not been mentioned before, we have agreed to do a full referral to the school, it will be done either today or Monday, then they will contact you to arrange finalising the admissions process and we can go from there. I will contact you when they have formally offered her a placement.”

I was speechless.. I thanked him and hung up… then I did a little happy dance! One I shall not be repeating in front of people as I then realised I am the type of dancer kids cringe at and beg their parents not to bust ANY moves!

words can not express just how brilliant this is for Dinky!

I looked up the admissions procedure at the school and they will contact me to arrange a home visit and for Dinky to go in for an informal assessment, then they will formally offer a place… so I am reigning in my uber happy until after they have offered a place formally and I have got Dinky’s start date and uniform..

Special needs group…

Things have always been up and down with the group, but yesterday Dinky was adamant she wasn’t going. I tried to explain they are just playing at the clubhouse, but she wasn’t having any of it, she trashed her bedroom in a massive meltdown and then tried to do things she knows she would get in ‘trouble’ for, in the hope that I would tell her she wasn’t allowed to go.
This morning she was in a foul mood due to the anxiety, and another meltdown, so I told her she didn’t have to go if she didn’t want to. She still needed time to calm down, but she was a lot happier.

Only half an hour ago, she told me that the SN group leader is really bossy and she doesn’t like it. Now, this really annoyed me because the SN group leader has been in numerous TAC meetings and said she agreed that Dinky had PDA before her diagnosis, and now she is making demands on Dinky to the point where Dinky doesn’t want to go.

Sometimes I really hate the fact that people just don’t see what PDA is like from the point of view of the child/adult.

Dinky used to really like the SN group leader, but now she doesn’t want to go with her. I don’t know what to do. I didn’t push it today, after I finally got her away from the spin cycle on the washing machine and walked the dog, Dinky has been in her own little world with her iPad, I have tried to engage her, but she is not interested. She just wants some time to herself, which is fine.

Maybe I can get her building lego towers later