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.
Although 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!