It’s been just over a week but only now I am able to take it in and write about it. I always imagined that when it happened, I would be writing this blog instantly, shouting it from the rooftops.
But it hit deeper than that. Harder.
Do you know how many people have not believed me that my daughter has autism or even on the ASD spectrum for that matter. I could list them all here, right here right now. But its pointless. One day my daughter could read this blog and if she did it would be hard hitting to see the people who doubted it.
From day one I knew something was different. I guess most parents do. I didn’t even think it was different because she was a girl and I had raised tow boys It was more than that. But it took me a long time to realise what was going on. This is mainly because I did not truly understand the ASD spectrum. It’s not something that I was educated on, and I found it (and still do) mind blowing in terms of what ASD is and how people with ASD present. Both my sons show ASD traits but like her.
The fight started, now I look back, when she was about 3. I have been making all these mad adjustments and not really realised it. Can only have certain socks, certain textures…
I can remember saying to people at aged 3 “She don’t like that shop, maybe it’s the lights” because sometimes we would enter a shop and within minutes, she would say she felt funny That it was too bright, That the lights were buzzy.
Do you know how many people have said her “behaviour” was because of me? Because she is spoiled. People very close to me have said that many times.
“She acts that way because of you”
I never understood exactly what was meant by that, and when I challenged, I would be told that I spoiled her, that I “Allowed” her to pick and choose what she could and could not take part in.
The primary school was shocking. SHOCKING.
In nursery they were amazing. I worked next to the nursey. I would often look out of the window and see her standing alone in the garden of the nursey…no shoes on…spinning around. The nursey picked up on it quick. Noted that she struggled to interact with others, the stemming…the sensory.
But when we got to school age, it was like I was mad. The school denied most of the time there was any issues. You see, she was never naughty at school and was high achieving. Soo…. she became a wallpaper child. People stopped noticing her.
Until that one time….
She would never do a speaking part in the schools plays. I mean the school kept saying there was no issues…. but also acknowledged that she hardly spoke. Ever. But they managed to convince her to be the Angel Gabriel in the school Christmas play, she had one line. We practiced at home and the day before her anxiety was through the roof. I kept telling her that she did not have to do anything that made her feel uncomfortable.
The next day I left work early and got a seat near the front for the show. I have never missed any of my children’s shows. Not one. So here I was, chatting with other parents, phone ready to record her one line. I could see her, sitting with the other children waiting to go on. She was wringing her hands and looking straight ahead, not involved with the chatter like the others. Various kids went on…. a donkey…Mary…. Joseph… You could hear parents sighing and the occasional sob as their children performed their different parts. Then someone said something about an Angel and that was my daughters’ cue…. but she did not move. I looked over anxiously as the teacher bent down and said some encouraging words and she slowly got up. I can’t remember her exact line, but it was like “The baby will be born in a stable if they can’t find a bed” or something along those lines. As my child walked to the mic, a hush fell across many in the crowd. Most of these parents knew my daughter That she hardly spoke, that she would often have melt downs at birthday parties. That she liked to spin. They also knew that she never had a speaking part. So, they waited…as did I …. I was holding my breath so hard I could feel my heart thudding in my ears. I was wishing to whoever to make her just say her lines and walk off. “Don’t be scared bubba” I whispered over and over in my head.
She had on a costume I had made in the middle of the night. I had been at work all day and didn’t realise I had to make the costume I had gone in the loft and the only thing I could find was her christening dress. It was way too small, but I spent hours adding to it and now she stood on the stage looking that the good witch from the wizard of oz rather than an angel.
She stood in front of the mic…looked at the crowd…her lip started to wobble and then…she meowed. Like a cat. And then she hissed…. like a cat. And then she went on all fours and crawled off the stage.
This…as a spectator…not really knowing my child…may have shocked many people. I mean I could hear them…people tried to whisper but I think some parents didn’t know if they could laugh or not.
Me…. I just sat for a moment. Nothing that I just saw was new. She would often act like a cat when she felt pressured. I mean…she still hisses at me now when she can’t find the words.
But I think that was the first time I realised just how different she was…by the other adults shocked reaction. I was like…ohhhh….so you kids don’t do any of this…I see
I rushed to the front of the stage and when she saw me, she burst into tears. I picked her up and she buried her head into my hair and sobbed. I didn’t even speak. I didn’t get her school bag I just walked out and walked home. I don’t drive, and it was quite a walk. But she stayed buried in my hair and I just walked
When we got in, I peeled her away from my now very damp hair. I said it was ok. She shook her head. She said it was not. I hugged her. I run her a bath with bubbles and put her in it. I sat at the bathroom door, and we spoke about cats, that some cats can’t do what other cats do. That some cats are shy and different. We talked about normal We decided that normal was boring. She then said the bubbles were pooping too loud, so she needed to get out. Late that night in bed we spoke about the play. We agreed that her friends would not laugh at her tomorrow and if they did then they were rubbish friends. We agreed that the play really should have had a cat part and that she was the best person to play it. She asked me if she was stupid, I said no. She asked me if I thought she was strange. I said no.
Take that story and replay it in various forms but with that same context over and over and you will get a small snippet of what it has been like raising my daughter.
Raising my daughter is not comparable to raising my sons. I may have been a teenage mum. I may have had many things going on. But nothing is in comparison to raising my daughter.
Even today…the 25/7/21… I have had to help her break things down.
“Mum, the lady in the shop said she likes my shirt. She said it was cool”
“Did you say thank you?”
“Well done for remembering to answer”
“DO you think she was lying”
“No, why would she bother lying to you, I think she was telling the truth”
“DO you think she meant she wanted my shirt”
“No, she meant it looked good on you”
“So, she wouldn’t like the shirt if she wore it”
And so, it goes on and on. She will question me about interactions like this…about people’s facial expressions…about why people say please and thank you to certain things and not others.
She has a script in her bag, tucked away, that tells her how to speak to people.
It has always been this way and yet I have had to fight so many people to prove that my daughter is Autistic. And it has been exhausting
Every appointment we attend or new interaction I have had to try and make them recognises that she has needs. I usually say, “My child is under assessment for ASD” and usually, within about 10 seconds of meeting her the person will see that this is true and act accordingly.
But not the primary school.
She failed her 11 plus exam because they would not let her take her shoes off in the exam. Something she has to do when she feels overwhelmed.
I could list and list the failings, but like I said…. pointless.
Medical staff have been outstanding Even with no assessment they have always supported her as a ASD child. ALL her medical notes (She had recusing tonsillitis and then tonsils removed) state the same thing “This child is currently under assessment for autism” It made a big difference and alas allowed the medical staff to do their jo whilst also navigating how to communicate with her.
Friends, family, professionals, public…. all these people have made it harder for my daughter. By refusing to acknowledge and respond to her needs. To act as if there was nothing more than a “behaviour” issue. To say that she needed to stop “Acting spoilt”. I have had people say to me “I wouldn’t have it Kendra, juts make her wear the clothes you buy”. Jesus…lucky you are here Karen…I don’t know why I did not think of that.
She has been under formal assessment since 2017. That is when I got NELFT to formally pick it up. She had her first meeting a few months after the assessment and then nothing. We have juts been waiting. Coping. Fighting.
The pandemic come and boy……that is when the ASD traits come to a head. When it was time for her to start year 7…with no induction…no transition…that is when I needed help the most. That’s when I needed a formal diagnosis. When my daughter is rocking and screaming and asking why she is not like her peers and I have had to say “You’re under assessment for ASD, lets wait to see what they say” over and over…that’s when it hurt most.
I called this year in March. Aske dhow long until she gets her assessment. You know what NELFT said…anything up to another 5 years!!!
Another 5 years….
I spoke to other parents…. people I work with…they confused that because of Covid there was now a back log, and it could be years until my child got a formal diagnosis.
Now…I know whet some people will be thinking…. why does it matter if she has a formal assessment…. its juts a label…there is not loads of support.
I will tell you why it is important
Because it matters to her. She sees things in black and white (There is that autism again) and she does not accept that she “Might be Autistic” that she “May be on the spectrum”. She wants to know why she is different. She wants to go and absorb the information herself,
She has a right to know what is going on with her, she has a right to have a formal diagnosis. She has a right,
And now NELFT were telling me 5 years.
Let me tell you something, this blog, when I started it…I never really knew why I did it, I just knew that I wanted to speak about stuff. Little did I know that this blog would be so powerful
After NELFT told me 5 years I cried. A lot. And then I stated writing emails and such. I was told that if I paid £3000 plus, I could get a private assessment. I don’t have that money…. but I was going to get it for sure. I called my GP to get a letter from her to back my case and she asked me what I was doing. I said I have to go private, and she said “No…it’s the same people…do not pay…make noise Kendra. Make noise”
My doctor has backd me with the ASD stuff from the day I met her. She is the one who put pressure on the primary school to back my application. I listen to her.
And so, I made noise.
I wrote a blog. You can read it here. I tagged in many people including my local MP. I then googled the CEO email addresses of many people…. head of mental health…. head of CAHMS….and I wrote an email to them all …I copied in contacts I have at channel 4 news and ITV news …
The email said that they had all failed my child and I was going to hold them all accountable, I added copies of every email I had sent since 2017 to the NELFT services and pointed out the lies they had told. I said that they had given me false time frames. I had an email that stated that they had lost my paperwork in 2018….and so every call I had made since then…and they said I was in the system …was a lie. Because they didn’t even have my paperwork.
I said in this email that I would be happy to share all of this publicly.
I then added my twitter at the end.
And I sat back
I kid you not…the next day
I got emails saying that there had been a mistake…that people needed to talk to me….
I got a call from the PA of someone to say that they were so sorry….that they had lost my paperwork….this was all their fault and because of that (and not because I was going to the press …not at all…no sir) because they had lost my paperwork and had “Made a mistake telling me I was still on the list” They were going to ensure my child was seen very quickly.
I had to get a load of paperwork over to my daughters SENCO that day (The SENCO was a life saver) and…get ready for this…I got an email the next day to say they had a space in 5 weeks for her appointment.
And so, I told the person who messaged me that if that appointment was not available or taken away from me, then I would be contacting them direct.
And we had the first appointment when they said…and then the second a few weeks later.
While this was going on I still had to battle daily for her. Work with her. Help her figure the world out. 5 weeks passed and no one came back to me. So, I emailed. Said I needed some response. They said it would be a few weeks.
A couple of days later I got an email to say they needed to speak to me…. the assessment team…and they could speak to me this morning if I were free.
This was it. This is when they were going get me back for all my noise
“I’m sorry Miss Houseman but your child is not on the spectrum”
Is it…is it really?
I emailed them back. I said I would meet with them in an hour. Damn right I would. I went to my room…got my book …and I listed all the reason why they were wrong. I listed all the reasons why she needed support.
I was going in for a fight, And I knew it was going to be a long fight. I had seen so many people go through it. But if they thought I was gonna just let this go…no…not on my watch.
I’m not going to lie…the few minutes leading up to the call I felt sick. I was exhausted. I didn’t know if I had it in me to have another fight.
Whilst I was waiting for the call, my daughter came down to me. She said that she was dying and that she could not breath. She said this very calmly. I said she was having an anxiety attack (as she often does before school) and that she needs to go stand in the garden on the grass with no shoes. We had the same conversation we did each time…that if she were not actually breathing, she would pass out. She asked me if she is strange. I said no. She told me that she can’t use the toilets in school because the lights are too loud. I said I know bubba.
So, I answered the phone to the lady as I stood in my dinning room …watching my child bare foot in the rain…. taking deep breaths whilst hugging her cat.
“Miss Houseman…. how are you “
“Serious…. Let’s just skip that….”
“” You sound stressed, so yes…lets get to the point…”
“Miss Houseman…Your daughter is Autistic There is no doubt, we will get all the paperwork out to you”
“I’m sorry, but I don’t accept that, and let me tell you why”
(Lady hears my flicking my 100 hundred pages)
She laughs nervously
“Miss houseman…. Your daughter has been diagnosed with Autism”
I just cried as I typed that. I keep crying. I keep bursting into tears randomly since that call.
“Are you ok Miss Houseman”
This poor woman…all she can hear is me crying like an idiot down the phone. Big ol’ crying. Sobs. I can’t even catch my breath.
“I’m not sad crying” I kind of spit out at one point.
It was very embarrassing on my part.
And the best call I have ever received in my life.
Because now I had an answer for my daughter. I could give her that missing part of the puzzle.
Me and the lady spoke for a long time. There were few meetings with others.
The battle is not over for sure. I have a whole load of things I have to navigate with school and such.
But forget that
There will always be a fight.
I will keep fighting in the background for her She may never know what I have done…have always done…always will do…to fight for her. And that is OK
I told her that evening. I sat her down and said that the people had a formal diagnosis. She looked at me with her big blue eyes…. searching my face…trying to work out if it was good or bad….
“They said you have Autism”
My daughter does not show many facial expressions. In fact, she shows very little emotion.
But she visibly relaxed. Her shoulders went down. She nodded. She was clam and she said…
“That explains some stuff”
Since then (Whilst I have been secretly crying) she has gone through a bit of a transformation.
We have had a couple of massive melt downs but…that was always coming…
My daughter has long thick blonde hair. Like…. people will stop and look at her. And she hates it, she has hated it for a loong time. She has begged to have it all cut off and dyed dark for over a year. She says that people look at her because of her hair and she does not like it. She says that she does not want to look like that. And I have said no. No. NOOOOOO
Why would she want to cut such beautiful hair off…. people would pay good money to have hair like that….
Then…. the other day…she said
“I’m not you Mummy, I am me. You keep saying how much I look like you when you were younger…. you’re making me keep my hair for you”
I tell you what I dislike most about the fight I have raising this kid….is that I have created a monster
A crazy little feminist…. with her own mind…with a strong voice….and is almost never wrong (Please don’t let her ever read that)
I could kick myself.
My daughter never wants to go out. She wants to hide away. She cannot navigate much of what is going on so hides instated.
Yesterday we went to the hairdressers. They have trimmed her hair before so when I said what she wanted the lady looked visibly shocked, she just sort of looked at me and said….” But you won’t let her …will you?”
I shrugged…. dropped her off and said “I will be back at 5”
And went shopping around town. I felt sick. My legs felt shaky. Which Is ridiculous because it’s just hair.
But actually, it’s not,
Its about me having to maintain and keep things a certain way in case she could not cope. With no diagnosis I have no idea if I am doing the right thing. I kept saying to people …what if it’s no autism….and I am not supporting her the right way.
But now I know that my daughter is Autistic, I have had lots of support from the right people, and I know how to deal with a lot of this now.
And she needs to work out who she is. Who she really is. Because she has been on hold for a long time and was told she might be on hold another 5 years.
I went back to the hairdressers and 5 of the staff were fussing around, she was upstairs so I could not see her but two of the staff came rushing down
“You got to see her…. its stunning” one said… and then the other “You will need to sit down”
Just so you know…I’m crying again…I keep crying when I think about this next part
I am nodding at the ladies as they fuss around me…like they think I’m going to pass out or something and as one goes to give me a drink …I hear an intake of breath and I look up….
And she is there
Standing at the top of the stairs
The only way I can explain how I feel is like when a father sees his daughter dressed as bride for the first time…you know how they portray that
That is what it felt like
It’s like I knew her…and was meeting her for the first time. I don’t think I had even taken the drink out of the lady’s hand. We all just stood there.
And then all the staff came over…admiring the cut…. talking about how much hair had been taken off
Whilst I just stood there…staring
Her waist length blond hair is now gone
It’s cut in a messy bob just under her chin and is dyed a very dark brown
All eyes were on me. I am not going to lie….it was a shock. I think the asked if I liked it and I said yes, I am not sure if that was the right answer….it just came out
Bu=y the time we got home I was in no doubt we had just done the right thing. She was talking with confidence. Walking next to me telling me all the different things she could do with this new hair…no more knots…don’t have to tie it up for PE…she spoke about anime and how this hair was like that.
She said she really liked it. She doesn’t “Really like” anything,
This morning she got up and asked to go to the shops on her own. She has never done this. She can’t pay for things in the shop on her own.
She could not
I said OK…. (And tracked her on my app I have on my phone…obviously)
And off she went
My child went to the shops…. bought herself a skateboard….and rode it home.
This…reader…may seem like very little to you
For those who have the blessing of knowing my daughter…you will know that she has arrived. That this is not the child we have known…hell no….
This is who she is now.
She went in the shop…. found what she needed…and delt with it.
My daughter has her formal diagnosis. It is not a label…for her It is the missing piece that she needed so that she can become the person she wants to be.
Me…I am just a bystander…. a cheerleader……a fan almost…. watching the creation of one of the most epic humans that I have had the pleasure to meet
I keep saying it…and I will say it again…
She is here to make change
And I could not be prouder
I will keep fighting for her. To get the support she needs and deserves…now…when/if she goes to uni…her first job……driving……whatever……I will always be there. I will never stop fighting. My daughter has Autism and if you try to discriminate against her, you best known that I will be there…always a few steps away…. circling like a lioness round her cub…. because my child will live this life to its fullest…I mean…who’s gonna stop her…
Now get out her way…