My daughters always has social problems be it with school or large gatherings. I just thought she had a school phobia, the doctors didn’t think anything of it as she grew up, just normal child behaviour.
Sometimes we had tantrums in shops, like most parents experience.
I always cried outside her door at night wishing for some sleep when she was small as she refused to sleep or stay in her bed.
As she got older, the tantrums changed into being particular about things.
Tantrums only really happened if plans changed or things weren’t as expected.
It became harder to enforce school and rules that she didn’t understand or agree with.
She was mostly withdrawn from social life, with exception of a few good friends who coaxed her out.
I thought my baby was gone forever.
Then the self harming started, it wasn’t just hurting herself by cutting; but this happens, it’s also sleep refusal, food refusal, social refusal, personal care obsession.
We became worried to say anything wrong, do anything wrong, but we weren’t sure what wrong was.
Thinking I was loosing my mind, the stress and worry causing nose bleeds, chest pain and sickness. I booked to see the GP for her not me.
I’d started doing the over the top motherly thinking and researching and questioned autism. The GP was noncommittal and instead asked me to self refer to CAHMs.
I left feeling like I was fobbed off, my daughter did too, she thought she was loosing her mind with the mood swings.
I got straight on the phone and asked for a call back for a referral, that same day, they called! It was a relief to speak to someone, get advice, talk through everything from the little details to family issues and changes which all could contribute to such stress in a teen mind.
Now I had to wait for her actual appointment, it was only a week away but during that time we still didn’t know what to do.
It was a week of watching. Moving all sharp objects. Bedroom searches. Removing all medications. Bleaches, cleaning fluid, all things you use or see daily that could potentially cause harm.
The week was also one of constant stress. Of crying with my husband, overthinking, not sleeping incase something happened while we slept. Feeling heartbroken because let’s face it, no one wants their baby to feel this way. I’d rather it be me, take away all her worry and pain.
I called my mum to rant and let off steam, I spoke to the GP, my husband and I talked quietly when we could.
We tried to encourage our daughter to listen to music, walk the dog, eat with us or watch movies with us, call a friend. Nothing.
When appointment day came, our daughter was reluctant to talk. I ended up speaking for two hours, answering questions, general chat to open questions, trying to remember as much as I could. It was a very emotional phone call. The person I spoke too said they were now going to speak to the child psychiatrist and I’d have a call back with an action plan in place today!
Result! Finally someone who understands!
I waited patiently and sure enough many hours later, they called back.
Firstly he says your daughter ticks all the boxes for female high functioning autism, obviously we need to do more evaluations and you need to tell schools senco to evaluate her and report back to me, but this is not bad, it’s more about managing and organising her and her day and routines to make her feel better. We have a face to face appointment for you on New Years Eve.
Now I’m wondering how on Earth we will know how to help her between now and then. The Cahms person says, you will also get a call from my colleague at REACH, he will come out and speak to your daughter and provide assistance, is this ok?
The relief in my voice must have been evident at this point. Yes! That would be amazing!
No sooner had the call ended, my phone rang again! REACH! Can we come out tomorrow? You can move in if that’s what it takes please come!
The next day, our daughters been prepped and is expecting the visit. I manage to get her out the house to get fairy lights for her bedroom, she hates the shopping experience but does cheer up a-bit when I agree to buying the dogs Christmas outfits and pyjamas.
The visit, went well I think, he only spoke to our daughter on her own. Afterwards he spoke to us about home safety, We had already followed the no lighters available, move all knives etc advice and also on communication techniques we hadn’t thought about. But it was great to see Our daughter seem more positive, and his visits are going to be each week up to her next appointment date!
Our daughter seemed so much happier and once we explained to possible diagnosis it also helped put her own mind at ease. She thought she was loosing her mind when in fact her mind is just different and reacts differently and we all can help her cope and put in place systems to prevent hopefully further breakdowns.
That evening we had a meltdown free calm and surreal for us, time in the house.
Now the eggshells are still being walked on a little, but we can walk normally, not trying to impossibly float over them, while we all learn more about autism and how to live with such a misunderstood disability.
Thank you for reading my family woes, I hope if this is also happening in your life, you know you are not alone! Help is there, don’t be afraid to reach for it.