The summer holidays rapidly approach

We are so close to the summer holidays and if I’m completely honest, I’m 50/50.
50% glad that she is out of that ridiculous school which alternates between serious poor judement and handling, to understanding and nice..for 6 weeks
50% cowering in terror, as this could be an extremely tough 6 weeks for both of us and I need to work out how much is too much, week to week.

Last year I didn’t do much with dinky. We went to the museum with a friend to see the space exhibit (again), this led to me having to restrain her near the upstairs hands on area after she kept running off and then was screaming and throwing things, followed by me removing her from the museum over my shoulder early, as she was attacking me, because she had to wait for the space tour.
It took 40 minutes to calm her down outside as she was in such a state.
We spent a lot of time at the adventure park where she could run around and I could keep an eye on her, went to soft play, and met up with others for picnics. I would not have dreamed of taking her to a theme park, or to a place where there would be tons of kids and waiting. Even the places we did go to we encountered people pointing and whispering, people told dinky off for her behaviour, there was lots of staring and parents spoke to me about controlling my child.
To be fair I knew something was amiss, but I wouldn’t have thought it was PDA as I had never heard of it or even that she could be on the autism spectrum (although it seems those with a narrow view of the autism spectrum have the same opinion).

Now I know, and I have some strategies that are working, this summer will be different… Dinky is still completely unpredictable. Which means even with the most detailed planning, a minor thing I missed out or something else entirely could throw everything. It means making plans is incredibly hard. However it is better to be prepared!
2 people have asked us to go visit during the summer. Both are 3 hour or more journeys. It makes it very difficult for a number of reasons. Why am I explaining this?
Well, most people with a 5 year old child will think the journey is the hardest part. For me that is just the beginning. I have to work out what we are going to do, what may change the plan, how much Dinky can take of plan changes and how that fits in with who we are going to see. Then it is the other person. How are they going to react to dinky. Are they going to spend the whole time trying to give parenting advice, or are they going to give us space? Are they understanding and how much do I need to prep them for Dinky’s sake? That is without factoring in the heat which drives both of us a little more loopy and then sleeping arrangements. Will dinky be able to jump in with me if needed, will she have space if needed.
I have to think if all of this before I say yes. Then it is working out with the other person what we are going to do. Is it something dinky can handle or not. How much are they hoping to pack in to the visit? I have to work dates around her special needs group as I don’t want to overload her. Will the anxiety of going. Away twice be too much? Will it impact on her group outings? Also we have to fit in my keywork sessions, and a visit or two from the integrated services lady not to mention my dad being off for two weeks. I have tried contacting her grandma, but she hasn’t bothered to call back so I am guessing that my 3 missed calls in a two week period mean naff all. Which makes me wonder more about the whole going away and if it is worth it if her own flesh and blood in the form of both her grandma and my dad want little contact. Yes I did say my dad was off for 2 weeks, one at the beginning and one at the end of the holidays but we are barely talking over an incident where he picked ‘work’ over dinky and that caused no end of grief, and he already said that he has booked himself on courses during the 2 weeks…
So that is 2 sets of useless grandparents, and a useless father I have given Dinky.
But I have to allow for them to change their minds at the last minute and become accommodating even though they will no doubt ruin my plans or my balance for her because they couldn’t be bothered to deal with it when I needed them to.

So the summer approaches and we are almost booked up already!

Preparation is well under way.

I have drawn up, but not printed a week to week schedule.
I have made some new visual timetable pictures for our trips including, Legoland, chessington and the cinema. (This is only possible due to the GP writing a letter to confirm he suspects dinky is on the autism spectrum and that she finds new social interactions, new situations and waiting extremely difficult).
I’ve made some now and next pictures for out and about so she knows what we are doing now and what will happen next. (Hopefully this will also help with waiting).
I brought a tshirt for the long days out which says “cute kid with special needs and attitude”. Hopefully that will reduce the numbers that stare or stop the unsolicited parenting advice of random strangers.

We have the back up of the special needs group house where she can be herself and everyone knows your kid has special needs so there is none of the rubbish that comes with going where the mainstream go. As to most Dinky seems fine. She walks, talks and is pretty independent (apart from her wrist reins). People assume that she is a typical 5 year old child. They assume that she can take everything in her stride and they take her meltdowns as ‘naughty’, ‘spoilt’ or ‘babyish’. The truth is while dinky can be naughty just like any 5 year old, most of the time she doesn’t understand the effects of her actions. We lived in a hostel with pretty much nothing for almost a year, I wouldn’t say that would create a spoilt child. And she is not having babyish tantrums, she is normally over anxious and overloaded, which means her tolerance is extremely low.

I could do without the hassle of explaining the difference to people who thing the sun shines from little Johny’s backside and how dare my child be overloaded near their ‘normal’ kid.

So this holiday could go well, or it could be a disaster!

Either way… It should be interesting!


5 thoughts on “The summer holidays rapidly approach

  1. Hi again! Legoland and chessington are great if you have your gp letter stating autism! You can get a disabled child ticket which lets a carer in free and then go to customer services for your exit pass….. No queuing !!! Marwell zoo also does disabled child with free carer if you are near that! I tend to keep a copy if Dillon’s letter with me and check before we go in if they do a disabled child option ! Hope you have some lovely days out! And hey, if grandparents and dad don’t won’t to participate, that’s their loss!!

    • Hi Tracey!
      Sounds like Dillon has been out and about at these places already!
      My GP was really good about writing a letter, I told him she had been invited to Legoland but her DLA wasn’t enough to not have to queue, so he did a letter for me stating she is likely to have a condition on the autism spectrum and has difficulties in waiting. Which means we can actually go!
      I kind of feel bad as she hasn’t got a diagnosis yet, but then I look at her and don’t want her to miss out because she hasn’t got it written in black and white that she has the same difficulties as others diagnosed with an autism spectrum disorder.

      We went to London eye and sealife before, they do free carer and reduced child rate too, you don’t need GP letter, but no queuing! Dinky had a great time!

      Hope you and Dillon have a brilliant holiday!

  2. We saved our tesco vouchers each year and get an annual merlin pass which gets us into legoland, chessington and a few other places all for about £46 in vouchers for a disabled child pass and free carer! Works out well for us as I also have a 17 year old son with aspergers and a ‘ normal but hormonal’ 12 year old girl!! All fun in our house!!

  3. Hi Dinkys mum 🙂 we have already had 2 weeks of holiday and I would say that over all its been easier. The balance between doing too much and not enough isn’t easy , especially when other people are involved.

    • Hi 🙂

      I have been thinking of you the past two weeks! I am glad it has been easier for you all.
      I think once we get past the first week she will be ok. If she an cope with everything else that is planned… Although I still have a few things to plan… Like meeting up with you and the little man!

      3 more days…

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