“But you wouldn’t change her.”

Many years ago a well meaning family member uttered those dreaded words.

“But you wouldn’t change her.”

I am mum to a severely disabled little girl who is now nearly 8. Now when I say that, most people assume she’s a wheelchair user and that her disabilities are primary physical. She’s isn’t and they are not. My daughter can walk, run, climb and jump after a fashion. Her disabilities are learning/cognitive/ intellectual disabilities (call it what you want). She is what generations before would call retarded and in she would have been institutionalised.

She has brain damage, global developmental delay and we are expecting an ASD diagnosis soon. She cannot speak, has little communication at all, requires around the clock support with all basic life skills, is not toilet trained and has extreme behavioural problems. She is, after lots and lots of therapy, biomedical, diet and holistic interventions, happy. This is something for which we are extremely grateful and it has not always been the case.

Following her traumatic birth my baby girl screamed for hours every day. It was constant and heart breaking. Medical people only conceded hat she would not need a wheelchair when she was running around the physio room. She learned to run but lacked the muscle strength to stand still so would career around the room in a discombobulated and chaotic manor. By three she was so frustrated that she was self harming banging her head on the floor and still screaming.  From the age of four until a few weeks ago she suffered from rumination disorder which involves persistently regurgitating and re-swallowing her food – yes it is as disgusting as it sounds! Until a year ago, when we finally started to give medicine for this, with support from a behavioural nurse, she would not sleep through and is still awake almost every day before 5.30am.

People assume that when you have a child like that the medical profession swoop in with support. This is not true. I have lost count of the number of doctors who have shrugged their shoulders and told me that there is nothing that they can do including the one insightful practitioner who genuinely asked “what’s wrong with her any way?”

Having a child with needs like mine costs a lot of money.  There are the insane therapy bills which have almost bankrupted us. Then there is additional costs for specialist childcare. The five point harness car seat to support an older child with low muscle tone with the £850 price tag. The ridiculous special needs toys that cost a fortune. The additional cups, bottles, crockery, utensils you have bought in the hope that she will develop more independence. Specialists supplements, gluten free and casein food, washing powder, baby wipes, nappy bin refills (and before anyone suggests reusable live a day in my life and then see if you still think that’s a good idea). The mainstream toys we bought because she once showed a passing interest.

The emotional cost in enormous too. I am thankful that I have a wonderful husband and family support. Lots of people don’t. Marriages break under the strain. Watching your child struggle and be in pain is horrible and it kills your soul.

Then there is dealing with other people. Well meaning passers by who tell you how to raise your kid when they have no clue. People who helpfully criticise your parenting loudly and publicly. The people who tell you that that God only gives special children to special parents. F*** OFF! The prejudice she faces on every interaction ever.

I know that there are many brilliant, capable and insightful neuro-divergent people out there. I am lucky enough to count them amongst dear friends. For some of these people their difference brings unique gifts and the world would be a far poorer place without them. However, there are many children and adults, like my daughter, for whom their cognitive disabilities makes living in our world the biggest challenge. They are not happy in their own little world but trapped in a lonely world without the skills to break out. They have the types of disabilities people don’t talk about and their suffering (and in her case she has been suffering) is often not acknowledged. I, like many other parents, fear for her future.

Is living with this hard? Yes. Is it frustrating? Yes. Is it exhausting? Yes. Do I love my daughter profoundly and deeply? Yes with all my heart. Would I change her? Yes in a heartbeat. Will I keep trying to help improve her life chances by trying to ‘cure’ her neuro diversity? Sorry but yes.  Does that sit in direct opposition with my disabled ally status and political stand point – unfortunately yes.