It was never going to be easy…

My last post was a bit… Well. It was the excess produce of my own mini meltdown.
It was never going to be easy parenting a child with PDA and having PTSD. Lately sleep has not been easy for me, that coupled with the events that have unfolded in the last week, and it becomes inevitable that cracks begin to show.
From the rubbish proposed statement, to the social services assessment paperwork, to the contents of the last post and having to deal with the day in day out PDA and meltdowns that have come with the new puppy.. It hasn’t been an easy time.

Wednesday was a mixed bag day. In the morning we had gone to the local autism coffee morning. I didn’t go to the last one that happened during the holidays as I knew it would be a disaster… However, at this one the specialist health visitor was going to be there. I have been trying to get them involved to be another person who sees me with dinky who can vouch for my parenting to drown out the two shocking statements in the social services assessment.
Turns out I was right not to take her before!
She has a friend, another case of suspected PDA, but the two of them together can be a nightmare. They were playing together, kind of. On the surface it looked like they were engaged together in goodie and baddie chasing game. However a deeper look and actually dinky had her own version of events and the boy had another. However while they were mostly happy, it was good to listen to what the health visitor had to say.
Before I could get to that part my phone rang.
It was the specialist ASD speech and language therapist that does the second professional assessment for a diagnosis.
She wanted to talk about how we proceed, so I gave her an idea of the activities we will be doing and she has agreed to see dinky for an hour at home, and then two visits, either to her rebound therapy club that starts in May, or the new SN clubhouse which we will be practically living in until Dinky goes back to school!
Then I find out about the special school place that has been allocated to the lad that got his PDA diagnosis a month or so ago. As much as I was happy for him, and I am, because he needs that place too. It was like a punch to the gut after I was told that Dinky almost certainly had a place.
We were at the autism support place that said Dinky wasn’t allowed to go, and I was called to the office to talk to the local people, who I know do agree that PDA is an ASD. I explained that it is hard enough without an autism charity turning her down too, PDA is so hard to get people to understand. She said she still wanted to support us, and would come to any meetings ect. I said there was no point integrated services had made their mind up that I was a bad parent. She said that she knows I am not.

Now I’m not exactly the best at dealing with emotions. With the PTSD comes a sort of feeling of being emotionally crippled. I deflect or internalise emotions and am generally good at not letting them surface… Except where Dinky is concerned, she is like my kryptonite. I spent years perfecting my internal structure to hold it all in, the woman that took me in at 16 and her children were always trying to make me watch things that would make me cry as they said I was like a robot- a robot that only feels anger.
So I sat and was bored out of my skull watching Bambi, and other equally pointless supposedly sad films and nothing. Turns out only 2 films made me cry- the green mile, and pay it forward.
When I started working, any ‘chat’ with the boss and is be in tears… Quite embarrassing, but my boss was quite good about it seeing as I was, at the time, considered his best shoey.
Since Dinky came along, anything to do with how I feel about her and how I feel either myself or someone else has let her down and it’s like the floodgates open and I become a mess. It took a while for me to rein it in. Periods of extra stress tend to send me a little up and down.
I don’t think things have really settled for me personally since we became ‘homeless’, the betrayal and then the complete muppet fest that has proceeded it, finding out about PDA then realising I had no idea what muppet was until that point… It hasn’t been easy.

Where was I…. Oh,.. So yes I began to cry, which isn’t like me.
Then I listened to the specialist health visitor, who doesn’t seem to be able to do much, despite what they are actually meant to do!

Time to go…

Dinky refused to get her shoes on, hid under a table and refined point blank to go as she wanted to play more.
I coaxed her out from under the table and was told that they really needed us all out by 12pm. So it was 11.50 and I was trying, we had just cleared away all the games and toys that they had all got out, but dinky was in meltdown, she was shouting and throwing bits of games everywhere, I was trying to say that we needed to get back for Sky (our 6 month old puppy), she wasn’t having any of that. I knew I was getting nowhere, so I put her shoes and bag in my rucksack put if on my back, grabbed Dinky’s arm, lifted her over my shoulder and carried her out kicking, screaming, head butting, and spitting. She managed to say she was hungry, but I told her that I didn’t have any food, or money, but as soon as we were home she could have whatever she wanted for lunch. Nope.. Not good enough.
We were in a small car park, dinky was in her socks and no wrist reins. So it was inevitable that she would run off from me. She was screeching “DONT TOUCH ME!” I was trying to keep her safe from cars, but she was having none of it. She was going between attacking me and running off.
A lorry pulled in and I had to restrain her. She said I was choking her, however my arms were only acting as a cage I wasn’t actually touching her until she moved to get out, I was bitten a few times, I managed to move fast enough for most of them only to be nips, but she did manage to clamp down pretty hard on one occasion, leaving me with a massive bruise . She then became non verbal and just grunted. Which was not a good sign. She was running about and all I could do was keep her safe enough until she had calmed down. The only problem was I was starting to get an audience at the windows of the other businesses in this little area. So I again picked dinky up and took her out and around the corner.
Not a good move.
Dinky was still trying to get away and across roads, she seemed to have regained her verbal ability enough to say I was hurting her and shouting that I was a bad mummy. Well, one mum and child could not cross the street quick enough and we were amassing more onlookers. This one guy in particular was staring at me trying to calm Dinky down.
So I shouted at him
“DO YOU WANT TO COME AND HAVE A CLOSER LOOK? HAVE YOU NEVER SEEN A CHILD HAVE A MELTDOWN BEFORE?”
It wasn’t my finest moment, but I was so peeved that he was just watching my child’s distress. Finally Dinky had calmed down enough for me to get her shoes on her and for her to come with me. We were both filthy, her hair was a mess and we probably boy looked a little worse for wear. Then I saw the same man again and asked him if he would like to follow us home too… Muppet!

While dinky has been much calmer since I took her out of school the environment of the coffee morning and lunchtime- on top of an already out of sorts dinky due to the new puppy, and it was a disaster waiting to happen.
Of course this just made the day worse, I hadn’t recovered but Dinky got home and was happy to be watching lego ninjago on her iPad while playing with her lego figures. So I contacted the SEN caseworker who said they are looking at alternative placements, and I just fell apart.

It was on the cards for a while, but once I blow out, I am generally much better and can focus better as long as the stress doesn’t continue, then is is count down to the next blow out. However, I am normally pretty good at sensing it and try to shut down, but that is not always possible.

I know this post makes very little sense in the way it is set out, however, I do feel it is important to explain what was behind the post on Wednesday.

Now I feel much better.
I understand that actually I helped stop the other parent fighting for a dx like I have had to, and that is an achievement, I should be happy not peeved. Dinky’s assessment is coming.
I will give the LEA little choice in the matter of her statement and school placement. They should know by now that I am not one to stop at the first hurdle, I shall indeed make sure that Dinky gets what she needs. Yes, the other lad got in quickly and without a fight, but that doesn’t mean that if I do fight Dinky won’t get the same.

It was never going to be easy, and it is not, but I still wouldn’t swap my life. Dinky is amazing, and I won’t stop until everyone who works with her sees it, and sees how much she has to offer given the right support.

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9 thoughts on “It was never going to be easy…

  1. I know that this may not be much consolation now but you are probably experiencing the toughest period with Dinky but it will get easier. I can remember several years ago a friend on the PDA Society Forum telling me that for some reason the ages 6-10 appear to be the worst and improvements do seem to come from there on in. Reading about Dinky is just like reading about Mollie at that age. The difficulties leaving places, always having to be the last kid to leave anywhere, the subsequent meltdowns because she couldn’t cope with the transition the lot. I think that some of this may be due to the increasing awareness of all the demands that they have to cope with and societies expectation, as they grow older, of how they should behave. Also she will be coming increasingly aware of her difficulties as she grows older and we can only speculate how this affects a very young but maturing mind. This is when Mollie started to refuse to go to places as she became more aware of her differences, her inability to control her own behaviour and she became aware of the subsequent stares. Imagine having an anxiety driven need to be in complete control but at the same time being unable to control your own reactions to events. Age ten and Moll is venturing out again and she has matured sufficiently to be able to understand and work on her condition. It will come with age and you will reach the point where coping with these stressful and exhausting meltdowns does become a thing of the past. Not much consolation now but there is light at then end of the tunnel and their is an easier existence waiting for you there. Once you have your diagnosis the rest will follow. It may be worth preparing yourself for the possibility that regardless of the support or provision that is offered by a school that there are some kids who still find the daily exposure and demands of a school setting too difficult to cope with. I am not saying that this will be the case with Dinky because you definitely have to try everything first but it may be worth mentally preparing yourself just in case. In order to protect myself I made a conscious decision to limit my exposure to ‘Muppets’ because they simply drained the life out of me. It may be worth, if you can, limiting your exposure to ‘Muppets’ to the absolute minimum. Sometimes the fight with the ‘Muppet’ for some tiny concession of support just isn’t worth the mental stress that has been drained from you in order to get it. It will get better, life will become easier and Dinky will gain more control over her PDA rather than it controlling her. I identify with you and Dinky so much, I can feel your stress, frustration and pain. I have walked in your shoes, I have cracked and I had far more support than you do which is why I think that you are so amazing. Keep swimming and eventually you will reach some dry land xxxxxxx

    • Thanks Jane,
      I’m way ahead of you on restricting muppets, I have cancelled the multiagency meeting as I know full well that I would end up telling them all what I think of them, which is not ideal at this point. Right now the only muppets I shall be in contact with are the diagnosticians and the sen caseworker.
      I’m sure it will get easier with Dinky, and I believe that she is on that cusp of being able to attend school, as long as the school completely understands what drives her behaviour. I am prepared for it all to fall apart, then I will have to battle to get some more support as it is very difficult on my own.
      I will reach some dry land eventually, it is the only thing keeping me going, that and the fact that Dinky is awesome, as much as this type of thing is really difficult, it is harder for her, and she does try so hard. Xxx

      • Once you get a diagnosis it should be easier to access respite through social services. I first tried for support from SS when Moll was 6 but got turned down flat because, although we were in crisis, we had no diagnosis. Do you have ‘aiming high’ in your area? They organise short breaks and so on or if Dinky doesn’t want to go on them you can swap them for help in the home. It’s only four hours a month but if you have it in one go it could be beneficial. Especially if you can get SS on board. That diagnosis will be so crucial for you and I can’t wait for you to get it. Fingers crossed re school, I really hope that with the correct support that she can access school. xxx

      • Aiming high has turned into short breaks. All of them are full. We have the SN group which is 2.5 hours a month and longer during the school holidays. We did have 4 hours a fortnight, but I have had to cancel as the worker came back really stressed last time and Dinky wouldn’t talk for a while after she got back.
        I shall be trying again once we get the diagnosis, but I don’t hold out much hope considering they say they only give help to those with severe learning difficulties/ sensory impairments, and severe physical disablement. I was told as she can walk, talk and feed herself that she doesn’t require any help. :-/
        I think June 16th will be a massive party! Not because I want her to have PDA, but because finally I would have the piece of paper that says I am not crazy, it is not in my mind, she does have PDA and needs the right support. It will also be a massive relief not to have to fight harder because she has no diagnosis. X

  2. Dinky’s experiences always ring so many bells with me. I too was “that” child. I think that you are a very strong person and I believe that you will get the correct help and support for Dinky, I really do. I do just want to say one thing and that is remember you don’t have to fight alone anymore. I know for someone as strong as you that’s a kind of alien thing but please remember that I am here if, and when, you need me. Just shout and I’ll do whatever I can do to help you. X

    • Thank you Julia.
      And thank you for your offer of support, as you say it is alien, not because I’m strong, but because I have always had to fight on my own and I don’t know any different.
      X

  3. Wow – this could be my 6-year-old daughter, who, we’re rapidly coming to the conclusion, has PDA. She loves hiding under tables in public places, which is getting embarrassing, and when we had to take her to A&E on New Year’s Day due to her having her first major meltdown, and I had to restrain her gently, she was shouting out that I was choking her, too.

    • Hi, Thank you for replying to my post.

      It can be really hard to keep them safe and feel ok about it, but it just makes it 100 times worse when they say you are hurting them.

      For Dinky, they said part of it may be sensory, that I wasn’t hurting her, but due to her Sensory Integration Difficulties and heightened stress, she may feel any, even just light touch as painful.

      Has she been assessed yet? or is that something in the pipeline?

      Dinkys mum

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