Autism and Anxiety – An Awful Combination

Another school morning and another anxiety filled hour for my autistic daughter. Her life is filled with rituals, fears, worries and restrictions and nothing is getting easier. She has autism with generalised anxiety and the combination is awful.

It all starts with how she wakes. (Well actually it starts even before then because she often has nightmares.) She immediately has to check that everything is how she left it before she fell asleep. She has to have certain comforts in bed and they are all lined up just so. If anything has moved while she slept her anxiety becomes extreme.

“Mum, someone came into my room again last night!”

“Mum, I can find ….I need you NOW!”

Things must never change. Nothing can ever be moved. That’s her rigidity due to autism but then the anxiety kicks in when something changes and her whole world spins out of control before she’s even out of bed.

Anxiety, autism and sensory issues then affect what she will eat (usually the batter from chicken nuggets for breakfast because she has AFID (avoidance restrictive food intake disorder) and will only touch a select few foods.) Clothes have the same problem and I am down to just three pairs of school trousers she will accept and two polo shirts. I have no idea what I would do if my washing machine ever broke! Socks cause huge anxiety but going without them causes even greater anxiety again. She can’t cope with school shoes so she has trainers.

Then she has her rituals every morning. Set things must be fully completed before she can leave even when time is short. Cries of ‘mum have I got time for…’ can’t actually be answered with a no or she collapses in a heap unable to function. Her mind has so many open boxes that must be closed before she can step out the door. Leaving any open means her day will be preoccupied by one unclosed box and she can’t move on. She can’t ‘just ignore it’ or ‘forget it for now’ or ‘do that later’ because autism and anxiety don’t allow for that.

She has to please everyone. Homework must be done to the letter. Missing a night isn’t an option because anxiety tells her her teacher will somehow know and reprimand her. Her own conscience condemn her because she has to be perfect.

Even before she gets into school she must be first or second in her line because otherwise in her mind she is late. Anxiety makes her thoughts irrational but autism prevents her seeing it that way. Autism then distorts how she perceives the world and those around her then anxiety tells her she’s useless, foreign and not wanted. It becomes a vicious circle controlling everything.

She can’t break rules for fear of being shouted at. Fire drills sent her anxiety spinning because she has to go outside in indoor shoes and without a coat, two rules that she can’t break due to her anxiety and autism. Being outside at the ‘wrong time’ sends her stomach in knots for weeks afterwards. No amount of social stories or reassures help.

Every day is exhausting. Anxiety exhausts her as she lives on her nerves never feels adequate or good enough or perfect enough. Then autism tells her this will never change and that everyone looking at her is doing so because she’s done something wrong.

Autism affects her ability to communicate then anxiety prevents her overcoming this.

Autism affects how she understands social situations then anxiety makes her feel the world is better without her.

Autism means she must obey the rules then anxiety makes her fear for the consequences of being unable to do so through no fault of her own.

Autism makes her vulnerable then anxiety means there’s nothing I can do to change that.

Autism Is a lifelong communication disorder affecting how she communicates, thinks, understands language and interacts with others.

Anxiety is worrying, unease and fear about the unknown.

Together they are crucifying my daughter and so many others.

There is no cure but that doesn’t mean I give up trying to help her.

My daughter is beautiful, kind, caring, compassionate and smart. If only the awful combination of autism and anxiety left her alone others could see her potential and love even more.

Being mum to an anxious child

What is it like being mum to a child with severe anxiety?

It is helping her downstairs every morning despite the fact she can do it herself. It is reassuring her, yet again, that she won’t fall just because once, several years ago, she heard mum fell down the stairs and hurt herself.

It is encouraging her to dress herself when she is afraid she may fall over because that happened once before and she never forgets.

It is reassuring her that her clothes have been washed and that she has worn them lots before and said they were ‘OK’. It is showing her, as always, that the labels have been removed so they won’t hurt her, the trousers are soft enough and the socks have no sharp bits. It is telling her she is beautiful so often in the hope she will one day believe me.

It is letting her see the breakfast cereal in the box otherwise she will refuse to eat it in case you have somehow bought another brand by mistake. It is pouring out just the right amount in case some accidentally spills over the bowl because she lives in fear she may somehow get in trouble even though she never has.

It is brushing her teeth religiously because the dentist said she should do it twice a day and she worries what will happen if she doesn’t.

It is walking to school making sure we avoid uneven ground because she may just fall and hurt herself and that would be a disaster.

It is going over and over all that the day at school holds because she is worried you may have forgotten her PE kid (we checked three times before we left the house) or she may have done something not quite perfect in her homework the night before. It is the heartbreak of watching her become mute as she walks through that school gate holding your hand like you are sending her into the lions den.

It is watching her walk (never run as you may be pulled up for that!) to her line, avoiding eye contact or body contact with any other child in the playground in case they say something that upsets her or they accidentally touch her. It is looking at her standing facing the front, arms straight by her side like a soldier as she lines up, terrified she may lose points for her class because she is not forming a straight enough line.

That was just the first hour of our day.

My daughter will bite her lips, chew her tongue, barely eat or speak but conform to everything school expects of her. She will inwardly break her heart if she spells one word wrong in a speaking test (and break down about it that night at home), she will freeze during gym lessons when they ask her to stand on a bench for fear of falling. She will take a school dinner as she doesn’t want to be seen as different yet she will hardly touch it. She would never ask for someone to help her cut it up as she is too anxious she may get in trouble for doing so. She would even eat something she was allergic too if she felt it would make a teacher happy.

Living with that level of anxiety is not healthy yet so many children experience anxiety on that level daily.

I can reassure her. I can encourage her and prepare her for change, but I can not take her anxiety away.

Watching her refuse to eat because she had a wobbly tooth was awful. Hearing her cry because she can not read a word in her new reading book breaks my heart.

Sometimes you may see me climb on soft play with my seven year old and think I am crazy. Sometimes you may hear me say I laid beside my child until she fell asleep and you may feel I need to let her grow up. You may see me lift her on and off escalators and think I am keeping her a baby. If you knew I held her in my lap and cradled her and wiped her tears last night would you perhaps think I was over protective?

I am not an overly anxious person and it is so hard to parent a child who fears every moving animal is out to bite her, every child is out to hurt her, every adult is wanting to get her into trouble and every broken toy is her fault.

Her anxiety is huge. Her worries are real.

Today I will do my best to help her as I do every day. Tomorrow she will be just as anxious and I will try yet again to help her. We get through one day at a time.

I acknowledge her anxieties but I also help her overcome them.

That is the role of a mum to a child with severe anxiety.

That is what it is like being mum to an anxious child.

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So she’s going to the mainstream

This time last year I was eagerly awaiting news on where my son would be going to school. We had no fight to get his name forward to the council as a child who would not be suitable for mainstream school, but we later had to fight to secure the right school placement. This week we had his second parents evening and he has settled well and is achieving within the right environment. We chose to defer twin sister Naomi from starting school as she was not yet diagnosed and a year could make so much difference to her development.

So here we are a year later. Naomi has grown in confidence, cognitive skills and comprehension and has much more understanding and awareness than last year. But she is still struggling (and always will) in areas affected by her autism diagnosis and also in her physical and independence skills. She is also doubly incontinent too. I have fought unsuccessfully for her name to be taken forward to the council as a child who would benefit from specialist education. Places are so limited and more and more children with autism are expected to attend mainstream schools.

At this present time the only advantage to this is that transition to school can start early. And that is very much a positive for a child with huge anxiety like Naomi. So last week it all began.

The Head Teacher, alongside the home/school link worker came to visit at home and gifted Naomi a school bag and a sticker book.

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And as a thank you Naomi made a card in return:

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I walked Naomi to the school to give them the card and we were able to talk to the office staff and the janitor. Naomi took a book with her and the staff took time to look through this with her. I have to give the school credit for this. And while I have reservations about wether the school can really meet Naomi’s needs, as her mum I will endeavour not to pass these concerns onto Naomi. She needs me to be excited for her in this new adventure. She needs me to support and encourage her and to help her understand this big change.

It’s a bit like one of her favourite bedtime stories ‘we are going on a bear hunt’ where it all becomes a big adventure yet the whole family still feel scared when they finally meet the bear. Only we won’t be running away. We will be facing this together, praying that this really exceeds my expectations and she excels there the same way her brother is excelling in his own way in his specialist school.

Talking of the bear hunt…here is my thoughts on her going to mainstream to the song of ‘we are going on a bear hunt’

We’re going to the mainstream
It’s gonna be a big thing
I’m so scared look at all those children!

Oh yes! A visit from the Head Teacher
She could have brought a pencil, she could have brought a tie
She bought her a school bag!

We’re going to the mainstream
It’s gonna be a big thing
I’m not scared, she has an IEP?

Oh no! The IEP from nursery doesn’t count in school!
We call another meeting, lots of people talking
The school will write a new one

We’re going to the mainstream
It’s gonna be a big thing
I’m so scared my daughter still wears nappies!

Oh no! They haven’t got a changing room
She won’t get 1-1, but she’s gonna need assistance
I can see some problems!

We’re going to the mainstream
It’s gonna be a big thing
I’m not scared there’ll be plenty of transition?

Oh no! She’ll be treated like the others!
We won’t know who’s her teacher, they’ll be no-one from her nursery
And they wonder why she’s anxious!

We’re going to the mainstream
It’s gonna be a big thing
I’m so scared, she has asd!

Oh yes! Another visit next week
I’ll need to work with them, we’ve secured a csp now
They know my name already!

She’s going to the mainstream
It’s gonna be a big thing
I’m not scared it is just around the corner

What? The uniforms are in the shops? Quick! Let’s look at the photos of the staff again, let’s reread every book on starting school ever written for kids, try on the new jumper, pack the school bag, get the packed lunch ready….oh it’s only March!

Why do I still get scared at her going to mainstream?

Let’s hope my concerns are all proved wrong.

Hopefully this time next year I will look back on this blog and wonder what all the fear was about…