Assessment & development……….

26981926_10159878054535607_1466619445_o (1)

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!

23795669_10159636035250607_1636878794249434589_n (1)

 

 

 

 

 

 

 

 

 

 

 

What is ‘normal’

17349684_10158454140295607_5537818492648944447_o

Living with a Bear can only be described as unpredictable,  Bear is our 3-year-old son Teddie. 

Teddie is our 3rd son, he wasn’t planned but we were overjoyed when he came into the world. 

Having a 3rd child didn’t feel much different than having 2 children, what was hard was the age gap. There are 10 years from oldest to youngest and 6 years from middle to youngest. 

For about a year after we had Teddie my husband and I would find ourselves saying:

‘This time last year we would be chilling on the beach, (the older two would be kind of self-sufficient)

This time last year we were…….

you get the drift, we were still adjusting to life with a small boy. 

Teddie hit all his milestones apart from one. At 2 he still wasn’t saying anything, and I mean nothing. 

As the health visitor entered our house I knew I had a jobsworth here, she was an older health visitor and I knew then Teddie wouldn’t conform and tick all her boxes. 

We went through the motions, can he do this, can he do that, I brought up the fact that Teddie wasn’t saying anything first as It Is always easier hearing it from the parent rather than the professional. 

25 words are the baseline for toddler talkers but this is for late talkers, 75-225 words are the ‘normal’ range for a 2-year-old so Teddie showed signs of delays.

A referral was made and we waited a few weeks for an appointment to see speech and language, It was in October so Teddie would be 2 years 5 months. 

During Teddie’s speech and language appointment not much was done with Teddie, was more us (me) talking about our concerns. We were in a tiny room, with a small about of toys on a table for Teddie to play with,  all while he was being observed (apparently). 

I was very honest and wondered if we had left Teddie out of day to day things, Were we allowing him not to talk?? 

As parents we always question our decision making, did I do the right thing by him, did we leave him out, should I have taken him to more toddler groups or were the groups we went to the right ones for him??

We constantly beat ourselves up over everything when really kids are just kids and they are who they are.

Although children reach developmental milestones at different times, when does a child become not ‘normal” (hate that word)

We all get them weekly ‘Your child should be…’ emails from the minute we fall pregnant! Why do we do it to ourselves??? Our children are who they are why do they have to be like the child next to them.

A 3-4-year-old should be able to Correctly name familiar colours, Count, and understand the concept of counting, Sort objects by shape and colour, Complete age-appropriate puzzles and recognise and identify common objects and pictures. 

Teddie is advanced in all the above areas but he cannot verbalise any of it.

I’m sure this is just the beginning of Teddie’s journey, we will support him and will always be his voice!

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