My daughter

Hi , my name is Sue and I have a wonderful daughter who’s name I will keep private for her protection.

My daughter is funny, beautifully quirky, kind, bright and has a wonderful way of seeing the world. She will stop in her tracks if she sees a bee on the ground and insist on getting something sugary to help it - even though she is afraid of bees! On a winter’s day in a cafe, she would twirl and dance in the warmth coming from the ceiling heater. She will dance down the road instead of walking beside me. She is amazing.

My daughter is diagnosed Autistic with a PDA (Pathological Demand Avoidance) profile. This means that when she is with her safe person (me) she has an anxiety-based reaction to any kind of demand, and has a constant need for control over herself and her environment to feel regulated.

To the outside world you will generally see a happy, confident girl full of life.

But what you don’t see is that it’s probably taken three hours of effort just to be able to leave the house.

Some days leaving the house is just too much for her, so we often have to cancel our plans.

My daughters difficulties mean that life can be very isolating for both of us and is mentally and physically draining as a parent.

Especially with no family support available.

It is also so sad to see her suffering with so much internal fear and anxiety.

Some days even the demands of putting on shoes or eating can be to much for her.

The psychologist who diagnosed my daughter recommended an EHCP (Education, Health and Care Plan) which would give her the extra support in school she needs to cope with her complex profile. Unfortunately - even though she has been unable to attend school since April - the EHCP has not been approved. Essentially this is because my daughter is “masking” her condition at school, which actually makes it worse.

We have an appeal for the EHCP in September so fingers crossed it then gets approved.

Sadly, there is a huge waiting list on the NHS for therapeutic support for my daughter. It could take a year.

Her physiologist that diagnosed her , her occupational Therapist that I was able to fund whilst I was working and myself all agree that this is just to long for my daughter to wait and this could mean that it will have a very detrimental effect on her health.

And to my heath also as things as getting increasingly difficult to manage.

I'm not sure how much longer I can cope without support.

Also without an EHCP I am unable to access any respite from the LA.

In order to care full-time for my daughter (and as a single parent) I have not been able to work since April and therefore am unable to fund the therapy she so desperately needs to help her get back to a more fulfilling life.

As those who know me understand, I am not really one for social media - so I feel a bit uncomfortable doing this. But I am trying to raise funds, if I can, to get help from a phycologist and for an alternative solution called Primitive Reflex Therapy.

Any help would be very much appreciated.

Thank you in advance x