Snow days aren’t always fun days……

Well, we weren’t expecting snow in March that’s for certain!

It honestly feels like half term but without the added expensive, other than the boys eating us out of house & home.

Having snow is very much like the hottest day of the year (other then it being the coldest) everyone heads over the county park for hours of fun, but for us we haven’t been able to join.

It’s taken Teddie 4 days to go out in the snow, even when Gareth & I had a snowball fight in the garden with Harvey & Alfie Teddie wasn’t bothered in the slightest. Teddie’s fear of getting wet overrides the enjoyment of having fun in the snow.

Walking to school on Monday brought a challenge in itself. Teddie had new school shoes but wouldn’t allow them to get wet so we walked in his wellies- which is fine I hear you cry, however Teddie will not allow you to change his shoes once he’s at school, new or old ones.

We have spent the week segmenting phonics using alphablock pec cards, drawing, crying, and eating half a ton of bread!

This morning Teddie saw I was getting his pants and socks out, he came up close to me and said;

“Teddie stay with bubby (mummy)”

Having even a few days off school I fear we will be back to square one with his transition. The first day back to school after half term is normally fine but Tuesday onwards he’s normally very unsettled, this could possibly be the same next week.

Cabin fever has certain set in, I haven’t been able to get anything done as Teddie likes the laptop on, only Godsend is he never wants the Tv on!

I am well and truly over the snow, I’d like to be able to leave the village without fear of not getting back in but most of all I need the routine back for Teddie.

Leaving the house has always been a battle for Teddie if he had his way he’d stay at home in his rocket PJ’s all day every day!

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

Assessment & development……….

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Haven’t blogged for a while as didn’t want to jinx anything.

A few months back Teddie was given a verbal diagnosis of autism by his lovely paediatrician- but like most things, we had hurdles in our way.

As many of you are aware Teddie has waited over a year to be seen by the child assessment unit due to Virgin Care taking over in our area.

Teddie’s paediatrician felt it was best for him to be referred back to her for a clinical diagnosis. We were told Gareth and I would need to attend a multidisciplinary hearing in a few months time.

Of course, this isn’t what happened…..

To cut a long story short Teddie’s paediatrician could no longer offer a clinical diagnosis due to changes in her department that were out of her hands (wanted to bang my head against the nearest brick wall!) we would have to wait for a child assessment appointment.

But, I can now say,

After a home visit just after Christmas, assessments in the unit & a multidisciplinary hearing yesterday we finally have the autism diagnosis in black and white.

It’s been a very long process, a process that should not take that long.

I have the up-most respect for the lovely ladies at CADU, they are trying their best for the children and their families but their hands are tied. 

26982471_10159878054880607_1913298177_oAlthough we had waited what has felt like a lifetime for this appointment, I sat in the waiting room just staring at this door. 

The other side of this door represents so much to children & their families, how can Virgin care think this service is not needed?

For us, all the waiting is finally over. we knew & had accepted Teddie was autistic a long time ago. I made it clear to the doctor we would continue to support Teddie regardless of what the outcome was after his assessments. This is not the same for all families, they struggle to come to terms with their child’s diagnosis.

Teddie didn’t need a diagnosis of ASD he already had one for complex needs but for him and his future he needed it, he deserved it.

We want Teddie to embrace who he is he’s not ‘different’ he’s autistic and we could not be prouder of him.

The child assessment unit is under review again in April, I cannot stress enough the importance of these units, for the children and their parents. The ladies are doing a fantastic job but are bearing the weight of those who feel the unit isn’t needed.

The staff at CADU are the ones receiving the frustrated phones calls from parents (normally from myself) when appointments are changed or cancelled. The situation really is out of their hands.

From a parent who has waited 15 months for an appointment that should have been within 4 months, my advice to Virgin care would be not to cancel any assessment units or services until you have a replacement service in its place. You are failing the children, their parents, their schools and their community!

For us, we want Teddie to have access to the appropriate support & resources for him to further his education in whatever setting (ideally a specialist school).

We have a referral in place for Emotional and wellbeing mental health service in the hope they can help Teddie with his severe anxieties. We also have a private referral for an SPD (Sensory Processing Disorder) diagnosis.

Although this chapter has finally closed Teddie has a long road ahead of him and more hurdles to jump.

I thank Teddie’s school every day for their help and support, we truly have the most amazing support system who are all on team Teddie! 

We are extremely proud of Teddie, he brought tears to my eyes during his assessment, he really is such a kind warm hearted bear!

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

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Our Bear……….

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Someday’s it doesn’t even cross my mind that there might be something wrong with Teddie.

He’s been the dream child of late, Scrap that he just drops his bourbon and a piece have broken off, I’m now trying to piece it together…..

oh, help!!

Other than the bourbon meltdown, he’s played with his toys, watched a few films, played in the garden and now playing with some coins I gave him.

There are situations at times where you just wanna say

‘no’

in a very stern voice but you know it will only come back and bite you in the arse.

Our reactions to situations are as important as Teddie’s, even Teddie has done something is wrong we must reassure him over telling him off.

Teddie uses visual for everything, so shouting and showing any signs of distress will only affect him and make matters worse for a few minutes (will feel like hours), so getting down to his level and showing & telling him

‘it’s ok’

with a massive hug normally does the trick.

These things are sent to test us.

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