OK Borris…Show me what you got..
Ok Borris…show me what you got
This is my first contact with you . I am sure there will be more. I watched your first speech as PM. Very…. interesting. You have made some big statements and promises. As I was watching I was thinking …what can I say to our new PM. Should I jump on what everyone else is saying? Then I thought…I will give you the benefit of the doubt…I will tell you about a problem I have and give you a chance to sort it out. So here goes.
My daughter is…. complicated. If you are reading this and know her then you will know that the word “complicated” does not come near to what I am really trying to say.
She has always been “Different”. Even my pregnancy was different. She was very powerful and strong when she was in my belly. I remember she kicked out once and it left me breathless in the shop.
She was born …angry maybe. I can’t explain it, but she looked angry from birth. As she grew, she would smile and such, but she was also very headstrong even when she was very little. She wrote the word “Mum” unaided…copied from the front of a card…. when she was 18 months old.
I noticed things with her from about 2. She struggled to say how she was feeling. Not that she couldn’t talk, she could not say if she was happy, sad, cold, hungry. As she become a little older, I noticed other things. She couldn’t wear certain fabrics (still one of our biggest issues) she could not be around certain noises or in certain shops. She never verbalised this. She would have a “Tantrum”. I would try everything to sooth her, but it was not until years later that I realised she just needed to be away from what ever was making her feel bad.
She has always been very literal. When she was about 4/5 I sat her down and said she must not talk to strangers. That she must not talk to people if mummy is not there. My usual stranger danger talk. From that day up until this very da she will not speak to a stranger. She will not ask for something when we are in the shop. We get a cab most mornings to school and many of the drivers have been picking us up since she was 4. Every morning they say hello and she never responds. I sued to say that she was shy or simply “She does not speak to strangers”.
She struggles with relationships of all kinds. She struggles to understand her peers most of the time and even her family. She can become aggressive (with me0 when she feels overwhelmed. She can become confused easily with too many options or if instructions are not clear. She hates change. She gets angry at routines. She wants to be a vet. I have only ever heard her sing once in my life. She is often sad. Most nights she can’t sleep and will cry with frustration and then wake up anxious. She doesn’t understand what anxiety is. She has started to tick more now. The school make many comments, one of the most frequent being “She shows no facial expressions”. She has 4 fiddle toys because some don’t “Feel right” some days.
She asks me questions I can’t answer.
She has had Art shown in the local are many times. Her drawings have so much depth and back story its unreal. She draws and creates art of someone much older than she. She spends hours reading about animals and what they need. She is like Dr Doolittle with animals and the love her. She makes up amazing stories. She has a wicked humour. She can remember things that others may not (Like ever single shopkins you can get). She loves her family.
She is unlike anyone I have ever met.
But she is struggling. Because if you are reading this and thinking my daughter is Autistic…I would make you right (some ADHD in there as well)
However, she has no formal diagnosis. It took me 3 years for the doctor and the school to listen to me and then the only reason a referral to young people’s mental health (CAHMS) was made was because she was spoken to be a police officer who said after “She done amazing, considering her needs”. I told him that no one was listening to me and he was shocked. So, it was pushed through.
That was October 2018.
Since then many things have happened. One of her biggest struggles is the sleep. She says she “Can’t stop thinking”. I have tried everything. Trust me…everything. I went to the doctors recently and begged them for Melatonin. She had not got to sleep before 1 every night for 4 days. She was exhausted and emotional. The doctor said no. Only CAHMS can issue this.
The thing is, my daughter has only been for the first assessment. It was good, don’t get me wrong. The lady spent 45 minutes with my daughter and wrote a very stern letter to my daughters’ school to say that she must be allowed fiddle toys as of now.
But for the diagnosis…. for ADHD and ASD…. she is on the waiting list. I call each month, on the 20th and ask “How long until she can be seen” I list the new ticks, lack of sleep and anxiety. And I have been told the same thing since that initial assessment. That it will be just over 2 years until my daughter is seen.
She is about to go into year 6. I want her to take the 11 plus. She is capable of taking it. However, she will most likely fail because she wont study for it (“You don’t do school work that the school has not set you mummy”) and she will not last 5 minutes in the exam because she will not cope in the way they will want her to do it…complete silence until they finish.
We will be looking at secondary schools soon, and she will be starting. How will I explain to the school all these things about my daughter with no formal diagnosis? How will they know that she can act different when the weather is “Heavy” or that she will cry if someone squashes ant. How will they understand that sometimes her socks are too “scratchy” and that she won’t pick up on signals from other people such as they are annoyed with her.
I can give my daughter all the tools in the world but …not all disabilities are visible.
Boris, there are thousands of children and young people in the same position as my daughter, worse positions, all over the country. Don’t even get me started on the PTSD some of the kids I work with are going through with no support. I am the first to bang the drum for all children. But today Boris, I need you to listen about one child. My daughter.
My daughter is suffering, and I am not sure who is too blame but whoever is in charge of children’s mental health needs sacking. Today. Right now. Because if a child’s mental health must wait “2 years” then what kind of life is that.
So Borris, or whoever it needs to go to now, my 10-year-old daughter has been and is being failed by this country. She needs your help. It takes a lot for me to ask for help. So let’s see if you are just gassing…..