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

Devon….

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What can I say about our trip to Devon, Other than the horrendous drive we loved all the beauty it had to offer.

We arrived late Saturday afternoon the older boys were excited to see what the area had to offer. Teddie, on the other hand, seemed very disorientation when we came into our apartment, he really didn’t know what was going on. I could see how confused he was by just looking at him, his face showed it all, worry, fear, chaos and exhaustion. While we unpacked we gave Teddie the time to and space he needed to explore and settled into this new environment.

There were activists I was unsure Teddie would participate in as in the past he wouldn’t have entertained them. We had back up plans for back up plans but to our surprise, we didn’t need any of them!

Teddies confidence was astonishing he was jumping in & out the indoor and out door pool, went down water-slides without any hesitations, even walked the full length of a high top rope bridge.

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We are always proud of Teddie but this week we couldn’t be prouder- of course, we had our little battles but we found a way around them- most of the time.

We aren’t the family that eat out a lot, mainly because I can’t justify the prices for a family of 5 but we ate out every night and most lunches when we were away.  I think Teddie ate the same meal most nights, as much as I would love for him to have something different I would rather he eats what he likes then have him go hungry (would be unheard of with the amount he eats before dinner)

We had a large pink elephant park outside our apartment as soon as I saw it I knew the apartments opposite were going to be ours. Every morning Teddie would check the park was still there, we started telling him it was closed as if he’d had his way he’d be in there from 7 am to 7 pm!

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The holiday complex wasn’t what I expected but Loved spending time with Gareth and the boys which is all that counts.

I wanted the care free us to stay there forever as I knew once we were home and back to normality our days will be filled with the older boys in their rooms playing on Xbox or PlayStation, Teddie & I will be pottering around the house in between a load of washing and drying while Gareth’s back to work. 

It was so lovely filling our days with fun filled family quality time!

I completely underestimated Teddie on this holiday he braved some of his biggest obstacles I hope he continues with that strength and determination ready for his first day at ‘Big school’ in a weeks time.

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