Lucky? I wish!

PDA ASD demand avoidance

I have been busy making some more PDA awareness pictures for the new Facebook page when Dinky has gone to bed. I am chuffed to bits that they seem to be well received!

There have been a few things going on that I have ad to get my head round before I blog and they kind of all tie in. I apologise if I lose my trail of thought while typing…

First of all, before we began the school holidays there was an issue began with another parent at the school. I hate the school gates and interacting with the other parents. Despite this, I kind of got dragged into a parent clique. Which is fine because I just come off as the quiet type and let them dominate conversations, which they enjoy immensely. However after a conversation about Dinky one of the other parents (whose daughter is a bit of a handful), said her daughter had HCS. As it turns out after a lot of being bombarded with text messages and covert conversations, that she had told this other parent that it was the same thing Dinky has (she remembered the letter wrongly). I knew there and then that this muppet had lied about an emergency paed appointment in a week, and having a specialist coming out to her. I hadn’t investigated HCS so didn’t know what it was. I don’t know what I thought it was, but our CDC doesnt do emergency PDA appointments as they don’t know what it is! Also it is doubtful that she would get a specialist out as there aren’t an in our area.

I got an overwhelming feeling of anger.

At first I didn’t feel I had a right to feel like that. If she wanted to pretend her kid had PDA it was nothing to do with me, and I wanted no involvement in it. Then it hit me, I go on the PDA facebook group and I see all the parents struggling with all aspects of PDA, from trying to secure a diagnosis from unwilling or incompetent Paediatricians and people from within CAMHS. I have seen parents of young children at their wits end trying to help their children who don’t get the support they need, I have seen parents of older children wonder if their children will ever live a normal life and I have seen parents of teenagers wondering if their child could cope with doing a handful of GCSE examinations, and wonder if their child will ever be able to cope in society.

This parent is unaware of all that goes with a child with PDA.

Dinky hasn’t got a diagnosis, but I am fighting tooth and nail to make sure her difficulties get the proper recognition, and it isn’t easy. It sure as hell isn’t as easy as this parent is making out! The bit that really got me was her asking how much I get in DLA for Dinky. It hit me afterwards that that is all she is interested in.

 

Then a week ago I spoke to a parent from dinky’s old school, this parent is one who knew about the possible ASD. I mentioned that we went to Chessington, and because it rained almost the entire time we were there we will get to go back again for free. She tried to tell me the best times to go. Then it hit me that it didn’t really matter because we have the Ride access pass. She said that it was lucky we go that.

I let it go as that could just be a fleeting comment. Oh no, ok. She went on to say that I was lucky I didn’t have to go to work and that I received DLA for dinky. She also commented on the fact that Dinky was getting 5 trips with the special needs group.

I didn’t know what to say. What do you say in that situation?

I know what I was thinking… Lucky? I wouldn’t call it lucky! Not for Dinky who needs all those things and not for me who would probably be medicated without those concessions.

First of all you have to look at the typical 5 year old and compare them to Dinky (which is not easy for me to do because it just shows me how much she struggles)

A typical 5 year old at a theme park like Chessington would have to queue for rides. Sure they will moan but they building on skills they are already learning and have learnt. Dinky on the other hand understands the concept and that it is the fairest way, but she has major difficulties understanding that this concept also applies to her. Then there is the added stress for her of crowds, not being in control and it all becomes too much and as her stress peaks she goes into meltdown, which, not only affects her because she has lost control of herself, but also me because I am being physically attacked, screamed and spat at. It also affects everyone in the queue as she screams and makes others feel uncomfortable, but also may catch an innocent thrill seeker with a stray foot or fist.

We had one such meltdown at Legoland, after a 5 minute wait, it put both of our stress levels up and we did not enjoy it as much as Chessington, where we only had small outbursts due to sensory overload, which calmed quicker once she was taken out of the environment. Realistically, if we didn’t have the ride access pass we wouldn’t have gone and it would just be another thing that Dinky misses out on.

The not working, hmmm.

There are many reasons I do not work at the moment. Top of the list is Dinky. When she is at school, this is my time to do what I need to do, housework, pay bills, do the shopping, make her visual timetable pictures, redo her now and next pictures when they fall apart, get lost, or make new ones for new activities. Where I sort out her paperwork and add letters, respond to emails and write letters or make phone calls to try and rectify situations as they arise. This is when I research PDA, try and collate evidence for appointments. Make calls to find activities, and secure support. This is when I go to meetings with the school, the integrated services lady, have tac meetings, appointments and somewhere in there fit in my weekly appointment for my own mental health.

After school, I have struggled to find a childminder that will have her. Until very recently she used to be up until very late. My only down time was school time. I don’t exactly use my new found down time in the evenings for myself though. I use them to raise awareness by making PDA related pictures and trying to connect with others who know how difficult this journey can be, and we all help each other.

The DLA is to cover the costs of Dinky’s additional needs. DLA is only awarded to those that meet the criteria and have the need, and even then it doesn’t always get awarded. Mostly it goes on printer ink, her special needs group activities, special needs swimming group, sensory toys, and other related things. I haven’t gone to a pub for 2 years and only drink at home occasionally, I no longer smoke and the only time I have been out in the evening was to go to the local autism group. The money is all Dinky’s.

The special needs group outings. Yes, I can take dinky for 5 days, 10-3, split over 4 weeks to give me some respite. Which I desperately need as I have no partner to take the strain, I have very little family. I have my dad who can sometimes be more of a hindrance then a help as he sets her off, but he does help sometimes. I am pretty much alone with Dinky 24/7 during the holidays. For someone who doesn’t bruise easily I still have the massive bruise from her biting me at swimming last week, and have been physically attacked almost every day since. I think I deserve a break, which, is not free! I pay for the activities. I tried the activities for typical children and it didn’t work. This is my ONLY chance of a break the entire 6 weeks! Without the special needs group I think I would be struggling immensely with Dinky and with no offer of help it would almost definitely have an impact on my mental health.

It is not luck, or lucky… these few things are needed to make our lives easier. This is the minimum of having our needs met as a family and as individuals. We SHOULD be getting more. I should be getting targeted help to deal with the underlying cause of the PTSD, but that isn’t available. Dinky NEEDS 1:1 at school, and to have her difficulties recognised by the NHS, and support with her sensory issues and speech and language needs.

 

I shouldn’t have to explain this but I feel it is important to have that out there. Maybe one person thinks like this person could read this and think… not lucky, not even close to what is needed.

 

 

 

 

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2 thoughts on “Lucky? I wish!

  1. Very well said DM, Unfortunately there will always be those who are absolutely oblivious to the daily physical and mental exhaustion that looking after a child with pda takes. Any help or resources are usually hard fought for and are not handed on a plate. Lucky is when something wonderful drops in your lap, unfortunately the support that our children require is a necessity that enables us to function rather than a little treat that is handed out to us. Perhaps one day the masses may begin to understand until then we’ll just have to roll with the well intentioned but at the same time ignorant and slightly offensive comments from those who will never understand.

  2. Thanks Jane,
    I just felt the need to say it, I know that there are those tha are still going to think of us as ‘lucky’ for winning the fight for certain services or help.
    Although mumsnet have just launched a campaign called ‘this is my child’ and it all aimed at this sort of person who believes the myths perpetuated by the ignorant.

    Hope You and your family are well

    Xx

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