To the outside world

A little thing I wrote this morning

To the outside world. You stop and stare at my child and me.
Yes we look like were taking part in W.W.E.
I know it looks harsh me holding my child by the arms and legs, but hear me when I say am not hurting her.
Am not a bad mum, my child is not having a tantrum,
You see my child has autism, the outside world is scary to her.
If I wasn’t holding her in some sort of wrestling move, she may come to harm. She does not understand that she can’t just run.
The sounds we hear to us can be fun , but these sounds to her make her run…it’s not just sounds it’s smells too.
So while you’re all staring can I please ask don’t judge me or my daughter cause to us this is just normal.

Diagnosis

When we moved to Yorkshire I made sure I got a gp. When I saw them I asked for her appointments to be sorted out over here.

I got a phone call from the head of cams and had a good talk with her. I told her all about Roxann and the things she does. She told me that it was not ADHD, that I needed to go back to the gp and tell them to make a referral to the child development team.
By this time September had come and Roxann was due to start school. I looked at school after school. One school was so rude in regards to her behaviour and learning needs, don’t get me wrong the head was a nice guy, just he said that parents would be after blood if she started there.

The school nurse started to come out and see us, to make sure Roxi was doing ok and to also help with looking at schools for her. Couldn’t send her to the local special needs school as she was not statemented. The school nurse thought it would be a good idea for us to have a meeting with calms face to face, even though I had told her I’d already talked to Caroline over the phone, but I agreed just to please her.

So after a mouth of waiting we went for a meeting, I took along the dairy I’d been keeping of Roxi. Surprise surprise she told us it was not a calms matter. I thanked her for her time and she said she would write to our gp to inform them of our meeting and her findings.

We finally found a school for Roxi.
I cried after we had looked round another local school. It was perfect the head showed us around and talked to us about how they would handle roxi and what support she would get, she asked if we had any question and I laughed and said know you have answered them all.
Roxi started 2wks before the half term. I was more worried than roxi, making sure the school knew I would be there at a moments notice. Needless to say she settled in well, yes there where a few issues but the fab thing is the school could handle it.
I know feel relaxed enough to be able to drop her off and go about my daily needs.
Doing the shopping on my own for the first time felt really odd, being able to get around a supermarket without having to stop and catch roxi or sit in the Aisles and hold her while she cried was a whole new thing for me to get used too.

The date came for Roxi to see a child specialise. Off we went taking all my notes and dairy. The doctor was wonderful she watched roxi and talked to myself and roxi’s dad about day to day life. Then she asked Roxi play. We spent an hour and a half with the doctor, towards the end she said she will refer roxi to a child behaviour doctor, speech therapist and also for a jacc assessmen, she said that we are definitely looking at ASD.
So a couple of weeks went by and the appointments started to come through.
The day I read the child development doctors report I cried reading what she had wrote to our gp and the others that she was informing to see Roxi.
I rang my sister and read the letter in floods of tears, I wasn’t crying because Roxi has Asd I was crying because I’d be fighting for so long for someone to listen to me. Reading the letter was also very strange the doctor had picked up on things that I myself had never even noticed about Roxi.

I read the report over and over again. I cried for about a week, which my sister said was fine for me to do because finally I knew I had my feet on along road of bettering Roxi’s life..

The first signs

The not knowing.

At the age of two I started to notice Roxann was not like her sister at that age. She was harder work, she didn’t sleep unless she had contact with me. She wasn’t doing the usual things like trying to get herself dressed, showing interest in the potty and she didn’t walk much. Now I know that no two children are the same, but children should be doing or showing signs of wanting to do at certain times.

I thought maybe it was because Roxann was born at 30weeks that maybe her development was just a little on the slow side. No big deal I still encouraged her the same way I had done with Bernadette.

No matter what I did she couldn’t get the hang of feeding herself or putting clothes on…I now know this to be called motorskills. Roxann’s are slow.

Roxann would never sit still was always hanging upside down or running around. There was no off switch hahaha. Bedtime was horrendous she would not settle at all, so it was many night spent sat up with her until she would goto sleep and that would only be for an hour or so then she would be back awake.

In the summer I remember being in the park and taking Roxann’s shoes off her so she could toddle about on the grass, well lord above she shrieked and froze. I had to go pick her up. She still hates the feel of grass on her now. If it touches her she can not stand it.
I also remember being on a camping holiday it was the first time I had used a shower on her…..she screamed and clung so hard onto my neck. No matter how hard I tried to do ooo and arrr and make it fun also splashing my own face with the shower, she was having none of it. She was the same when we went swimming or was in the bath if the water went over her face she hated it.

Biting oh lord did she do so much biting no matter how many times I told her no she still carried on. Roxann also has a thing for eating anything foam so we have to make sure nothing we buy her has foam or she will eat it. She upset her sister by eating the red nose she had bought for Red Nose Day.

As Roxann started to walk I noticed she was walking on her tiptoes I just thought it was cute.

I rang my sister one day as I thought that maybe Roxann might have ADHD. We talked and she said that some of the things Roxann was doing an ADHD child doesn’t do.

I made an appointment at the doctors, cause by this time I was worn out due to Roxann need 24/7 care. I burst into tears. Not only was she having all the behaviour problems but she was also struggling to goto the toilet.
The gp referred us to a child specialist for her Bowles and behaviour.

When we went for our appointment with the specialist he told us there was nothing he could do for the behaviour as the area we lived would not take children under the age of 5.
So we had Afew meeting with the Specialist and he said he had talked to one of his friends in child development, but unfortunately all he could do was put her on a list for when she turns 5.

I was heartbroken and lost. Everything was falling apart. I felt I had no strength left in me. By this time my relationship was falling apart.
My relationship with the girls father did come to an end.
That’s when I decided to move to Yorkshire to be closer to my sister for support.

Read more in my next blog