A couple of years ago (ish) when it was first suggested that Katie might be autistic, I was told to book myself onto a parenting course (or courses) because if we got as far as CAMHS that would be their first recommendation so it would help if we’d already done it. I signed up to The Incredible Years. I’ve since heard really mixed feedback about this course, but luckily for me the one I did was run by an absolutely lovely lady called Lesley and I did find it really helpful. I mentioned to her that we were trying to get an autism assessment for Katie and she told me straight up that I’d need to take care of myself because the process was long and difficult and it wears parents down. She suggested I also sign up for her ‘Boost’ course which was designed to support parents with their self esteem.
I didn’t sign on for Boost at the time because we only just about finished the Incredible Years before covid hit and the first lockdown happened, but unfortunately I have found out what she meant about the process being hard work and wearing parents down – and that’s even with the fact that we went private and Katie’s diagnosis only took a few months.
I have doubted myself big time as a mum in the last few years. In the first instance it was because Katie was so clearly struggling and we had absolutely no idea why or what to do about it. Then when we got her diagnosis and I started learning about autism it was a big wake up call that although we’d been doing our best, our parenting up to that point had really not been suitable for her neurotype and was probably doing more harm than good. Big time guilt trip and more a less a U-turn in the way we approached things.
Pre and post diagnosis life has felt like a constant battle.
Hello GP, please can you refer us to CAMHS for an autism assessment? Yes, based on what you’ve told us there is enough evidence for a referral. Oh no wait, we can’t without school’s input.
Hello school, please can you refer us to CAMHS for an autism assessment? No we can’t. Katie is fine in school. Any behaviours you’re seeing must be an issue at home.
Hello autism advisors at the council, if we self refer to CAMHS will we get seen? Yes but they won’t take you seriously without school support and the waiting list for an assessment is at least 2 years.
Hello school, we had a private assessment done and they have diagnosed autism. Please can we have a conversation about how you can support Katie? Well we don’t know about that, if it didn’t come from CAMHS we don’t think you’re entitled to any support
Hello school, a private diagnosis is just as good as a CAMHS one – we checked with both CAMHS and the council before we went private and they both confirmed it. Please can we discuss how you can support Katie? No. She doesn’t need an EHCP and she’s fine in school
Hello school, please refer to her diagnosis report which highlights several times how extensively Katie masks at school but how she still needs support. Please can we discuss? Nope, not interested. She doesn’t need any support
Hello school, here’s the autism advisor for primary schools who agrees that Katie needs support and that the accommodations we’ve requested for her are totally reasonable. Please could you put some in place? Ok we’ll reluctantly agree to fiddle toys but tell her off for using them, and she can’t have access to a quiet space because there is nowhere suitable at school. We’ll say yes to some other stuff just to shut you up but we won’t implement any of it.
Hello school, Katie is self harming, please please please can you help her in school? Just us supporting her at home isn’t enough. School ignores my emails.
Hello Emotional Health Academy, my daughter is self harming, please can you help? Speak to CAMHS
Hello CAMHS, my daughter is self harming, please can you help? Speak to the Emotional Health Academy
Hello GP, my daughter is self harming, please can you help? Puts in an urgent referral to CAMHS, who reject it because apparently it’s an autistic issue not a mental health issue
Hello GP, the autism advisors suggested Katie should have an occupational therapy assessment, how can we arrange this? Well you can’t really because you either have to have an EHCP which you don’t, or you have to go through CAMHS who have already told you to get lost.
And so it goes on.
Then there’s the fact that Katie doesn’t really like people knowing that she’s autistic but that when we do tell people we often get:
“I’d never have believed Katie is autistic”
“She doesn’t look autistic”
“But she seems so normal”
“She must be really high functioning”
“All kids have a label these days”
I kind of get why people say these things. We live with Katie and we didn’t realise she was autistic until Amanda came and waved it right under our noses (here) Most people’s idea of autism (and ours before we knew better) is no eye contact, lining things up, and wanting to be left alone – which is true in some cases but Katie doesn’t fit those criteria. But people’s constant denial / surprise at her diagnosis is really wearing. It feels like I’m always having to prove that I’m not an overly anxious parent and there is a reason she has a diagnosis. It wasn’t just us throwing a load of money at a problem that didn’t exist so that we could get a label for our child.
Anyway, that’s a much longer than intended back story as to why I did sign up to Boost when covid restrictions eased up and the course was on offer again. As Lesley predicted I did feel worn down and I do feel that my parenting is constantly judged, and it’s not great for self esteem. So I currently go on a Thursday evening and we’re most of the way through the course with a couple of weeks left to go.
This week was my favourite one so far because it was on compliments! Each person in the group had to write a compliment about the others in the group. Then we had to write 10 things we liked about ourselves. It sounds a bit corny but actually it did achieve something and everyone left feeling better about themselves. So I thought I’d write mine down before I lose them.
Other people’s compliments to me:
- It’s lovely to hear stories of your children. You are a wonderful mother
- You are a friendly lady with a calming personality
- Peaceful
- Sam is caring and good at listening and offers information to extend topics and support others view points. Sam is always happy to look interested in what is being said and never interrupts anyone speaking. Sam is considerate to all members of the group
- Sam: a beautiful lioness being the mighty protector of her children. Your voice (roar) gives them their voice…what a role model. You my lovely lady are so much stronger than you think you are…own it and work it!
The things I like about myself:
- I try my hardest to be there for others
- I will not give up when it comes to doing what is right for my kids
- I am good at my job
- I can take pleasure in the simple things in life
- I am conscientious
- I feel things deeply and love people enormously
- I like my smile
- I will see things through to the end
- I’m happy to be a crazy cat lady
- I’m proud of myself for losing 3.5 stones
And just by coincidence, Alice came home from school the other day and had done me a really sweet picture, unprompted and out of the blue. She drew a heart with ‘kind things about Mummy’ inside it. She’d written:
- Mummy gives great hugs
- Mummy is the best
- When we are sad Mummy gives us a hug
- Mummy is kind to me, Katie and Matthew
- Mummy helps us if something is hard
Sometimes a Boost is all you need!
Mum life 