A diagnosis….

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We are over the moon & jumping for joy, finally, we have the answer we have been waiting for!!
After a year since seeing Teddie’s paediatrician, yesterday she clinically diagnosed Teddie with autism.

It honestly feels like a weight has been lifted off our shoulders, although we always knew Teddie had autism actually hearing it come out of a professions mouth after all this time was music to our ears.

I have read stories of parents waiting as long as we have for an appointment only to be fobbed off with helpful tips and advice, then a year later they pick up on a diagnosis. I didn’t want that for Teddie- this fight has always been for him & getting everything and more that is available for him. 

It was always made clear to us Teddie didn’t need a diagnosis of autism, he would still receive a certain level of care because he is non-verbal and the form of communication he uses (PECs) but for Teddie’s goals, aspirations & his future having a diagnosis ensures he receives the help and support throughout his school years & life.

Gareth and I will need to attend a meeting in a month or so where we will be given the official diagnosis, for now, we are happy with a verbal diagnosis.

The wait is finally over, and a new chapter begins……..

Autism Helpline 

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

It’s just not good enough!!

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As the whole house was fast asleep last night (dogs included) I was wide awake annoyed about this letter we received!

Just short of a year ago Teddie was referred to CADU (child assessment & development unit) 11 months later we are still no further forward with no appointment in sight as the commissioning of the child Assessment & Development unit has temporarily been put on hold. 

How the hell can that be possible, how can children be made to wait that long only to be told the service has been put on hold because they want to make cuts, for a child to wait that long surely that shows a need for the unit??

I understand there is a process children have to go through in order to receive a diagnosis but why can’t the child’s paediatrician just be able to give a diagnosis, after all the referral has to come from them, surely they are more than qualified?

The level of special needs care in our area is nothing short of diabolical!
2.5 years ago a referral was made for Teddie to see speech and language, in all that time Teddie has only ever received one group course covering a 6 week period (once a week)

I introduced Pec off my own back having covered it while studying. Teddie see’s a therapist once in a blue moon but only to see what level of PECs he is working towards. We are very lucky Teddie’s school are on the ball with PECS, they are enjoying using it and have witnessed Teddie’s confidence grown since he started in September. 

Teddie’s paediatrician called this week and has asked to see him again this month. I wonder if she’s aware we are still no further along then the last time we saw her a year ago.
With no appointment in sight and Teddie getting closer to being 5 we will need a new referral as CADU only see children under 5, I can only guess how long the wait is for that!!

It goes without saying Teddie has a label of special needs as he is unable to Communicate but at times I feel Teddies been handed the shit stick, he has slipped through every net there is, I feel the system has completely let Teddie down!

In my opinion, I don’t think Teddie is aware he’s any different- he’s so confident & never hides from life- for that, I am in awe of him! 

Having a label does not define you, you are who you so embrace it, I know Teddie does!