Wednesday, July 18, 2018

The Joy of Red tape!

Oh, I do wish I was talking about the pretty wrapping type!

Alas no: Red tape, when trying to do anything for a child with additional needs, is such a joy!

We are currently in the midst of a ton of the 'so called' red tape, sorting out things that are required, for him and us, to continue living a full life.

Firstly is his wheelchair. Ajax has hyper-mobility, he can walk, but any sort of distance and his hips, knees and ankles start to ache and get tired. He starts tripping over his own feet, which then leads to falls, which lead to a refusal to leave the house again in case of injury. 
There is also the social aspect of it. Without said chair, we wouldn't be able to get out of the house, as a family. He struggles with too many people and sensory issues around days out, his chair gives him his own space. When he's had enough, he will throw a blanket over his head, put his headphones on and block the world out. This means the rest of the family can continue to enjoy the day and he is calm.

The point is, he needs this chair.

So, his wheelchair, which was provided by his physiotherapist, is getting a little small. When it was delivered, we were told it was fully adjustable, just ring the number in the booklet supplied. So we rang it.....

Here we go!

The number supplied is no longer in use, please contact this other number.....

Ring other number to be told that he would probably need a bigger chair....

However, they can't simply request it, it has to come from the physio....

Contact physio, to be told that: "as he hasn't been seen for over 6 months, he needs to be referred back to us, via the Dr, so we can sort this"....

(Funnily enough, we wanted him back at physio, as his walking has deteriorated a bit)

Go to the Dr, to be told that she wasn't sure how she referred him back to a particular physio, but she would look it up and sort it!

Sweet Lord! I only want his bloody wheelchair adjusted!?


On top of all this, we are starting the statementing process. Here in Wales, we still have the Statement of education, up until now, we haven't required one, as his mainstream school has made special provisions for him, and others like him, in the form of a discreet class, just 5 children next year.

The statement basically makes sure that provisions are in place, for the next level of his education. He will require a special needs school, or unit. 

The red tape bit?

Basically, it will take 6 months for a group of people, that have never met my child, to collate information that decides my sons future. I sign a form, a Education Psychologist visits him at school a couple of times. We all have an opportunity to have our say....then these strangers decide.

Because that makes sense, doesn't it?!

I would just like to say: I would not say no to a gift wrapped in the other type of red tape!

Or coffee

Or cake.

Saturday, July 14, 2018

School Holiday plans

School holidays, in the UK, are nearly here! One more week and our children get a whole 6 weeks off. You know what that means? Rain! (you know it's true).

So what are our plans, what's our 'summer bucket list'?

In all honesty, we don't tend to make plans, usually. Ajax hates leaving the house, so days out are done on the spur of the moment, when he's having a good day. We can normally get him out, if his wheelchair can be used. He can 'hide' with a wheelchair, he doesn't have to interact with people and can zone out, or go on his phone, if it all gets too much. He doesn't have to worry about his legs/ankles giving him trouble.

Tuesday, July 10, 2018

Taking Control (and a catch up)

I seem to write these catch up posts whenever I feel like it. However, it's my blog, so I can!

There's not much to catch up on, during the week. It was my wedding anniversary, but having no money meant we didn't do much. We treated ourselves to a healthy breakfast, at our new favourite cafe: Woodies

After that, it was just a normal day.

The weekend, however, was ups and downs all over the place. Friday saw a weight gain, at Slimming World, no surprise, hormones playing a big part. 

Following that, thanks to my mam, staying at mine with the boys, while giving me the keys to hers, Friday night was a blissful night off, boy was that heaven It might sound odd, to others, but to us, well, it works. I get to eat dinner in peace, do what I want, then go home and sleep for as long as I want. I can't think of a better way to celebrate 26 years of marriage.

We got to go to the cinema, watching Adrift, have a takeaway for dinner, then crash in bed. I slept, on and off, until 1.30pm the next day!? 

In amongst all of this, other stuff happened, that led me to question myself........

I did something that I thought was silliness, just acting the fool, it was not taken that way. I won't say any more about it, as I'm a firm believer in fair, and the other person has a right to answer, which they can't here. They also have a right to their feelings, which I would never intentionally dismiss.

What this has done to me, is mess even further with my anxiety and self confidence. Now, I do not want any one to blame the other person, it's not their fault that I suffer from these things! 

Basically I sank, badly, this weekend. I've cried myself to sleep, I worried, I've really struggled. Yesterday, I couldn't even face brushing my hair. 

I've been trying to take control for a while, but it keeps going wrong! Mental health isn't something we can openly talk about, even now, with all the publicity surrounding it!? Why is that? Why do we still feel that we can't open up?

So I did!

One of the other mothers, from the school, messaged me..........and I actually told her how I was feeling! I told my mam, and got a cuddle. This meant a lot, as I know she's never really understood it, but is still so understanding.

Then, this morning, the first noise I heard, when waking up, was my youngest and Mr. Ojo, giggling at something on the TV. It made me smile, made my heart sing, and made me want to get up, get dressed and get out.

I guess what I'm trying to say is: However stupid you think it may sound: Speak up, someone will listen.

However bad, and chaotic, the world seems, people are innately good, they want to help. If this blog post helps just one person open up, I've payed it forward.

I know I'm lucky to have an incredible support system, so many haven't, but you will be surprised who will listen, if you just speak up.