Seeing Red over Blue Badges

dinkyandme:

I totally agree with the sentiments, although for us the circumstances are different, but the hostility is just as bad, as is the culture of ‘oh your lucky you can park so close’- lucky isn’t the term I’d use for having a child with Autism or other disability.

Originally posted on Premmeditations :

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Birthdays are tough as the parent of a child born prematurely. As you move forward through the years, you are thankful that you and your child are still here, even at the same time that you are thrust back to the day of their untimely arrival and to the hopes, fears, smells and noises of the alien environment of the NICU. To say you feel mixed emotions does not to justice to the complex web of feelings you have to deal with.

When your child is, like Boo,  one who will never outgrow their prematurity, when their early arrival led to complications that will affect them for their whole lives, these feelings are mixed with others too: maybe grief, maybe anger or sadness.

But if you are reading this as the parent of a premature baby or a child born with disabilities, let me tell you what many have told me in…

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You can’t have it both ways! 

Is it really any wonder that those outside the autism community get frustrated when there are two distinctively different messages coming from the autistic community. 

1. 

  

This message States autism is a disability. 

2.

   This states autism is NOT a disability.

So who is right? 

Some say 1 some say 2 and some will say both. 

Me? I say it is 1 for those NOT at the ‘mild’ end of the spectrum and 2 for those that are. 

I mean why would a parent of someone who goes to mainstream school with very little support and have a friend or two see autism as a disability? 

I’ve heard some say ” oh he’s Just a bit quirky and struggles a bit in social situations.” This parent probably still claims DLA (disability living allowance) for their child while proudly having the 2nd picture as their profile picture and has never had to apply for a statement or EHCP. 

For the rest of us, who parent an autistic child who are moderate to severe (even some with kids classed as ‘HFA’), we fully agree autism is a disability. My child is very much disabled by her condition. She sometimes struggles with the idea of putting her own shoes on, can’t cope in a shop, needs hours/days to recover from socialisation, couldn’t cope in the mainstream school environment and so on and so on. I’ve had to fight for services, the statement process and special school hunt was a nightmare! We are the ones who battle for more recognition and try to explain the hidden disability autism is. 

You can’t have it both ways! You can’t fight for funding and services for ‘a different way of thinking’. You can’t fight on disability discrimination grounds of people say it isn’t a disability! 

While I’m sure there are autistic adults that hate parents who call autism a disability because they don’t see it as one, obviously haven’t faced the discrimation some of our kids have faced or not needed some of the concessions or disability services that our kids need!

Sometimes I feel like commenting on the number 2 pictures on Facebook and asking wether or not their kiddo gets DLA or any other disability concession and if so, either take down the picture or give the disability stuff back! 

I’m so sick of people not understanding that autism can be disabling and people posting picture number 2 do not help!

Some people won’t like this post, but this is how it is for US. 

When people use off the cuff remarks

I had a conversation in a Facebook group earlier in the week about an incident after she had been on an activity with her special needs group. 

Dinky was struggling with the transition and the stand in leader said ‘she has been good for us all day’

Surely as a special needs group they should understand the ‘holding it in’ phenomenon that is well documented in children with autism, and the outcome is usually the parent bares the brunt of the holding it in behaviour. So telling me ‘she has been good for us’- in that moment does several things, which I am guessing is not how the person intended to come across. 

1. It makes me feel, you think I’m a failure because she can behave for you but ‘misbehaves’ for me (when that isn’t even what is happening- she is not ‘misbehaving’ she is decompressing and it is out of her control)

2. It makes me feel that you think you are better at dealing with my child than I am because you managed 5.5 hours – which I’ve already done before I dropped her off and will do again before she goes to bed. 

3. It immediately puts me on the defensive and stresses me out more, which stresses dinky out more because I am shorter than I mean to be. 

4. It makes me feel that despite having the diagnosis and other paperwork that details Dinkys difficulties, it makes me feel they don’t understand her.

5. Finally, I begin to wonder if I want my child going somewhere she can’t be herself and that, rather than support us with the transition, says ‘she has been good for us’ which makes me feel horrid. 
I’m not silly, I know the person would be horrified if they realised how crappy they made me feel, and I’m pretty sure, knowing the person who said it, it was actually supposed to be comforting that she had a ‘good day’ (which you have to question how good it was if she had to hold it in all day). The thing is, when you are tired and have had a tricky week, it just comes across as a ‘put down’, because that is what I have been used to with professionals and there was a time where the same person said she didn’t think Dinky had ADHD or needed a special school. Which again was probably meant to be positive but just makes me feel that they don’t understand her, and that just because she talks she must be fine. I had that with the mainstream schools and the person knows the trouble I had with the schools, especially the second one. They must have heard that the group leader was furious at some of the stupid things her school said. I don’t see this as any different as the second school made a point of this to me previously and actually tried to say Dinky didn’t want to come home and it must have been because of me. 

It hurts. I love Dinky to the point where sometimes the love I feel for her overwhelms me. I can’t stand the thought that others feel I am neglecting or harming her making her feel she doesn’t want to come home. 

Today I dropped Dinky off at a local play scheme, they are not a specialist service, but the leader and the staff really make an effort and wanted to be inclusive and said they would take Dinky and keep a close eye on her. 

Any way, she has been going for a while and I forgive most of the misunderstanding as they are not a specialist service and I don’t expect them to have researched the conditions of the children in their care like I would expect from a specialist service. 

Today I had to discuss with them mine and dinky’s plan for a better transition at the end of the day. 

I had talked to Dinky this morning about what would make her feel better about leaving and why she struggles leaving. She couldn’t tell me, but I’m pretty sure it is the amount of demands that come from leaving at the end of the day plus knowing hometime means dinner and the start of the bedtime routine, which is not exactly preferable to playing. 

To get her to leave at the end of the special needs group activity earlier in the week I had to carry her to the car, now she is getting heavy I can’t do that all the time. So I asked her if I brought her special buggy in (which we call her chair), and I got all her stuff together and all she had to do was get in the chair, would it help? She said yes, and said she likes no shoes and socks and I always make her put them on. 

So I explained this to the staff, whose first response was ‘but she has been so good here’- which didn’t upset me as much as the special group doing it, because they can be taught and aren’t supposed to know. So I explained the autism ‘holding it in’ phenomenon, and they looked a little shocked. However were instant in saying “we can’t have that, what can we do to help? We thought she was getting better here but didn’t realise how it was having an effect with leaving and at home”, so I explained I would bring the chair at hometime and that it would be really help if they gave her some warnings that I was coming. They said that she had made a friend but sometimes said he annoys her because he follows her everywhere. I explained that this little boy was probably willing to do anything she told him so naturally she would be able to play with him as he is a follower and doesn’t mind Dinky being in full control. Dinky generally doesn’t have problems getting kids to play- it riles me that people assume autistic children don’t want friends. Dinky’s trouble, which I explained to them, is keeping friends, which is a problem due to her autism.

 ‘All kids have that though’. It was one of those moments when I wanted to face palm and slide my hand down my face. No not ALL kids manage to work their way through an entire mainstream class in a few weeks who then won’t play with them because of their need to be in control due to their PDA. Autism can sometimes be what happens with typical kids but more extreme. All children need routine, but the need for this is more pronounced in Autism. 

With PDA, some of the typical autism traits are more pronounced- like all kids with autism have a level of demand avoidance and are very black and white about how things should be and being in control, but this is majorly ‘enhanced’ in PDA. 

The ‘all children do that’ thing is actually dismissing the child’s difficulties, and dismissing of my concerns for my child, robbing me of my voice for her as her advocate. Again the person who said that would be horrified if they knew that is how it comes across. As a parent it makes you wonder if everyone feels that way? Because she talks and doesn’t have obvious difficulties in a play environment, that she is fine. I find myself wanting to say, well, it isn’t that simple and she wouldn’t go to a special school if she was like ‘all children’. She wouldn’t go to an independent special school in the next county if she didn’t have complex difficulties that needed a specialist placement. It isn’t like she only has trouble with me- the school have to restrain her on a weekly basis for hers and others safety. 
I think part of the problem is me. I have very little self esteem and the feeling like a failure is how I feel anyway so that is the first thing that comes to my head when they say that she behaved for them is that I’m obviously not doing it right despite trying my hardest to get it right. I’m so used to professionals blaming me it doesn’t seem to be such a leap for it to be continuing with another set of professionals. I find it so hard to trust them. I want to, but I can’t. 

Sometimes people need to be more careful with what they say in relation to children with special needs and what they say to tired parents when their child is struggling with transition. Equally, the reason I don’t tell them how I feel is that part of it is how I take it, and I need to learn to not let it rock me in the situation. 

Ignorance is bliss

I know I should have just left it- but something in me gets riled when people have a go at families with children who have additional needs! 

A family with 2 disabled kids in a food chain carpark were fined for overstaying by 20 minutes. 

The comments were mostly truthful, just because the family has disabled children doesn’t mean they get to flout the rules- and I whole heartedly agree. If I was aware I was overstaying I would move the car or not have gone there knowing it was highly likely we wouldn’t get out on time. 

I agreed with a woman who had the same sentiments. 

I should have left it. 

I was already having a bad day-dinky hardly slept , I Lost the Merlin annual passes and my bank card, dinky went to her special needs group and was good for them which was why she couldn’t cope with anything simple like ‘it’s time to put shoes on’ so I had to carry her to the car, cancel my bank card and find out if Merlin would replace our lost cards (which they will). 

I should have left it, but then some muppet said she doesn’t get concessions why should disabled people? 

Oh I seriously lost my temper, I’m so sick of people looking at dinky when we use the ride access pass in a theme park, or try and work out why we parked in a disabled bay when both of us can walk. 

She then went on to say 

It’s like ppl who av disabled kids get all this extra money for some reason and their rolling in it laughing coz they get allsorts of leeway and it’s not fair. Whilst ppl like me And my husband with our 2 kids are left struggling, and do we get help?? NO

I really lost my temper! All this extra money- I can assure anyone who doesn’t have a child with a disability that we are not rolling in it, nor laughing. 

But it gets worse! 

why wud u need extra money?? U choose to have ur kids why should other pay u for it? It doesn’t cost anymore to have a disabled child as wheelchairs etc ya get off the NHS anyway so ya don’t av to buy one unless u choose to.  

The ignorance was strong in this one! I made the point by putting up the costings from contact a family’s ‘counting the costs’ campaign. I said something about Dinky’s school being far away

Move closer to the school or pick a different one! Make sacrifices and deal with it like everyone else has to

Astounding- say my child goes to a special school and ignorance chooses to believe there is one on every corner that can deal with all types of SEN/D. Like I would choose to send her so far away. 

I should have left it at the very beginning but I’m sick of the way that society has turned on the most vulnerable within it. So many people out there who believe life is easy for us and that we are enjoying lavish lifestyles, not once stopping to wonder what it is like to be in our shoes. 
This is the ignorance families of disabled children face daily- this isn’t just one person- this is the voice of many being said by one. 

It isn’t a choice we make to be parents of children with disabilities but it is our future and I won’t tolerate ignorance without trying to rectify it. 

This person didn’t want to hear it, was happier to slate disabled children and families and tell us she has a wonderful husband and two perfect kids. Ignorance is bliss they say.