Just another day……

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We have a poorly boy!

Yesterday and this morning were particularly hard as I had to try to explain to Teddie he has to stay at home as his cough had got the better of him! 

I’ve used his Pecs cards again this morning to show him he’s staying at home as he has what he likes to say a

“poorly sore”

Teddie seemed to understand what I was getting at- or he could have just run out of patience & just tolerated my rabbiting on about “poorly sores”

Monday Gareth and I had a meeting with the school senco & Teddie’s class teacher. Between us, we completed Teddies one plan. (One Planning is based on the principle that planning should start with the person and must have regard to the views, wishes and feelings of the child, child’s parents or young person, their aspirations, the outcomes they wish to seek and the support they need to achieve them, SEND Code of Practice: 0-25 years, 2014, Section 9.21).

At the end of every One plan, we were asked what our goals and aspirations are for Teddie’s future. Of course, we would naturally say just say for Teddie to be able to talk but there certainly is a bigger picture that even us as parents miss at times. Between us, we set some end for years & future goals.

Every parent wishes their child could experience everything the world has to offer including us but I find it really hard to express how I see Teddie when he is older- can he not stay our baby forever?

Whenever Gareth voices his views on Teddie he would tell you the only issue is Teddie’s lack of communication.

Gareth’s would tell you:

“If Teddie could speak he would tell us his worries and fears & it would be easier for us to help him”. 

I completely appreciate Gareth’s opinion, however, Teddie’s worries and fears along with his lack of communication has to be seen as a whole and not separate issues.
If Teddie could verbally communicate would he still have the same worries, anxieties, obsessions & rigid thinking? I feel he would, but he would use words to express himself better about his fears.

Since my last blog, (It’s just not good enough) I had been asked to speak on the Dave Monks BBC Essex show. He very kindly raised our concerns over the waiting time to see CADU (Child assessment development unit) and the dispute over the funding. 

Essex County Council has since been in talks with the North East Essex Clinical Commissioning Group & found a solution- the unit has been reinstated until the next financial year.

We are not quite jumping for joy, I’m still not confident Teddie will be seen by April, he turns 5 in May and CADU only see children under 5- there is a chance they won’t see Teddie at all.

Our local paper also covered our concerns with waiting times & the problems we are facing resulting in the lack of support we are receiving. (see link below)

Teddie has an appointment with his paediatrician on Monday, I am hopeful she will be able to offer us another pathfinder so he can get the help and support our Bear is entitled too.

Colchester Gazette

He loved it…….

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The day I had been dreading has been and gone. Teddie loved his first day (morning) he, of course, had his moment at school but they are moments we were completely expecting!

Teddie needed to arrive at school at 8.45, We left the house at 8.40 (literally live around the corner) I didn’t want to hang around as Teddie isn’t always good with waiting. As soon as we got into the playground off came the coat and he wanted to play on the play ground but unfortunately, he didn’t have enough time.

Teddie had a bit of a melt down as he couldn’t play outside, I ended up leaving him crying which I really did not want to do.

I got a call from the school at 10.30 to say all was ok! Was very pleased to hear Teddie had handed over a PECS toilet card & went without any anxiety!

Teddie will be a learning curve for us all, even me, take today as an example- I was under the impression Teddie would want to go straight into class like he did at preschool but he had other ideas.

After chatting with his one to one & teacher this afternoon they mentioned the children will start their day with a phonics lesson & there will be no out door play first thing. Being informed with this I will get to the school earlier tomorrow so Teddie can play in the play ground before school.

All we can do is take one day as it comes!

We love our Bear & wouldn’t have him any other way!

 

Dear parents….

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I’ve stood in your shoes on more than one occasion, this may be your first experience with school or like me, you may have already been through the process.

Our Teddie (Bear) is due to start school on Tuesday, He is extremely clued on, Caring, loving & kind hearted boy but unfortunately, he cannot communicate with words as Teddie is non-verbal.
Teddie uses a complex form of communication known as PECS (picture exchange communications System) It requires Teddie to exchange a series of pictures which will correspond to what he wants or needs.

Some might say Teddie is hard work (I do sometimes) We have good days and bad days just like every family does. We have days when I question is Teddie any different than the next 4 – year -old then the minute I think it somethings happens and I’m literally pulling my hair out.

We all think the same when we see a child acting out or a parent who isn’t conforming but really we should be standing together as even if you hate to admit it you probably have been in the shoes of someone who is struggling with a strong minded child.

As your son or daughter embarks on their new journey at school I’m asking you a massive favour! On your walk or drive into school next week please would you support your child in educating them with basic knowledge of a special needs child. Tell them they kind, caring and friendly just like your child but they just need more time to adapt to their surroundings or situations.

Tell them, A special needs child can differ from each induvial.

  • They can struggle with their behaviour or ability to socialise, for example, they struggle to make friends
  • Reading and writing can be an issue but this could be because they have dyslexia
  • Their ability to understand things and their concentration levels may not be the same as your child
  • They may be a physical disability
  • Communication may play a vital role in their disability.

I have no concerns with Teddie trying to make friends at school, my main concern is the other children not making friends with him!
You and your child could make the difference of Teddie experiencing everything and more the infant school has to offer- the alternative is him having to leave the school as it’s made to hard for him.

We have everything in place for what Teddie will need for when he is at school but unfortunately, we cannot control who likes who. The thought of Teddie on his own at break and lunch time keeps me awake most nights.

Even without any additional needs is scary stuff starting school at any age, trying to fuse them friendship groups can cause stress to an adult let alone a 4- year- old.

Teddie will be eager as ever to get into class come Tuesday, he’ll be ready to make new friends and knows he has to be kind to everyone.

Please send your child to school no matter what age telling them to ‘Just be kind’!

 

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Love everyone the same!

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I love that Teddie is never afraid to approach children who are happily playing, he runs towards them with a spring in his step, I can see his determination in his face to make the boys who are playing together his friends. As he gets to the boys, who are playing with their nerf guns, he just stops by their feet with a massive smile on his face and just stands there. I can see both boys just staring at each other then back to Teddie, knowing what they are thinking but hoping to hell they don’t say it out loud, would hate for Teddie to witness nasty behaviour when he seems so happy. But within a second of standing there, he joyfully runs back to us as if he has achieved the task he was given. 😍😍💙

Had one of them thoughtful days yesterday, as we drove around seeing all the lovely faces the sunshine has to offer I noticed how different we are actually are.
Made me question what is being different ‘normal’

  • It is a girl with blonde hair, a girl with red hair, A girl with black skin or white skin.
  • Is it a boy with brown hair, a boy with black hair, a boy who is mixed race?.
  • Is it a lady who’s a lesbian? or a man who’s gay?
  • Is it a teenager with special needs?

As we grow our babies inside us all we ever want is for them to be healthy. As soon as we reach one milestone we worry and threat about the next but in all honesty, if I was told there was a problem, health wise with any of my boys I would still love them as much as I did the previous day.

There really is no such thing a being different, we are all different without having any additional needs but unfortunately, society has led some people down a road that is filled with hatred.

The only thing that’s wrong with being ‘different’ is if you allow the judgement of others to bother you so be pragmatic, Walk tall and walk your path with a humble heart and be proud of being you! Would you really want to be all the same- I know I wouldn’t.

We love our Bear and wouldn’t have him any other way!

Is it bedtime yet, for me!

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I’ve escaped upstairs to have a very early bath! It’s been one of them days!

Broadband has been playing up again so I called BT to have a rant and went through all the mind numbing questions and task. Any parent will understand the words “can you turn your broadband off” even without having a child with complex needs it’s basically like saying world war 3 is about to begin! As I did what I was told I waited for it………WHAT!!! Harvey came running down the stairs moaning as he was in the middle of some stupid Fifa game, Teddies screaming as he was watching some crap about opening a kinder egg, Alf was the only one not moaning!

We got through it all by Teddie throwing my birthing ball (FYI I never used it) up the stairs and letting it roll back down while the other two had Gareth’s boxing gloves out and punching each other in the hall way upstairs!! Dinner was late going in the oven as the very lovely lady from BT was telling me all about her holidaying in the UK (thanks for that). I did lots of different variations for dinner, Chicken and bacon Kievs for Harvey while Gareth and Alfie had chicken wrapped in puff pastry, chips for Gareth, couscous for Alfie!! Teddie wouldn’t eat any of that so he had just Chips! He, of course, wasn’t happy with that and got every PECS card he could find of chicken nuggets and gave it to me- we don’t have any chicken nuggets (kill me now!)

Tomorrow BT are coming out, again so the afternoon will end the Same way today has, cheers for that!!