"With a child out of school, the world feels an incredibly judgmental and lonely place'

Author and business consultant Katie Tucker's child has been out of school for seven months (and counting). She writes about how she's piecing herself back together during this difficult time.

My child is nine and autistic.

They’ve been out of mainstream school for seven months (and counting).

It nearly broke me.

I had to pick myself off the floor (literally) many times. 

I had to find ways to keep going despite the heartache, the crippling uncertainty and the deep rooted shame.

When you have a child out of school, the world feels an incredibly judgmental and lonely place.

Maybe, in many ways, this experience did break me.

And, somehow, I pieced myself back together.

Never to be the same.

I still worry about what the future holds but I’m in a better place, a new place. Not (yet) one of radical acceptance but certainly one of hope.

Here is a list of things that kept me going. The things that slowly put me back together.

• Research. Research is my default setting in times of uncertainty. My child was diagnosed autistic (with a demand-avoidant profile, also called PDA) in April. I knew nothing about autism. When they first crashed out of school and autism was suggested, I spent weeks researching, following relevant accounts on social media, joining communities, attending webinars and reading books until I wasn’t learning anything new. This helped me realise I was not alone, fed my curious action-prone brain, gave me the language to articulate for my child’s needs and provided me some early answers to some of the challenges we’d witnessed from an early age.

• Finances: How the hell will we manage financially with a child at home full time? I spent time early on in our ‘out of school’ journey focusing on money. Fortunately, both my partner and I are self-employed, which gives us a huge amount of flexibility when it comes to time, but equally a great deal of uncertainty around long term income. I made a list of things to cancel, downgrade and put on hold to save money. I mapped out a few worst case scenarios and drafted a budget to make sure bills could be paid even if I needed to reduce my working days. This helped settle some of my anxiety.

• Therapy. I found a therapist soon after my child was at home full-time. I’ve used talking therapy in the past to help me navigate rough patches. I could feel myself imploding under the stress of the situation and needed a safe space to wade through my conflicting thoughts. I have a weekly session online. It costs me £50/week and I have cancelled other things to prioritise these sessions. These sessions have made up a huge part of my own recovery journey.

• Intentional prioritisation: I had recently published a book and was looking forward to capitalising on this huge project with pitches for book promo and new client work. I quickly realised it would all have to wait. I couldn’t support my child and all that entailed (fighting local authorities, writing emails and filling in forms) whilst simultaneously going around smiling and talking about my book. I prioritised my child and made a conscious decision to let the other stuff go for as long as was needed. I did schedule mental checkpoints every three months to reassess how I was feeling and what mental capacity was left for non-ND parenting related activities. (Let’s just say not much!).

• Support: I took full advantage of all free local and national autistic/EBSA (Emotionally Based School Avoidance)  support bodies. I made the most of any free advice, consultations and resources. This included The Markfield Project , SENDIASS, IPSEA (free legal advice for SEN parents), the National Autistic Society, Not Fine in School and the PDA Society. They exist to be used. They reassured me that I wasn’t alone.

• A close friend (in proximity).  I couldn’t bring myself to share my reality with all my friends. I have some amazing friends (who no longer live close by) but over the phone/text support wasn’t what I needed/wanted. I kept one long-term family friend close. She was safe. Being a safe friend means no judgement, just holding space.

• Private assessment. We decided to seek a private diagnosis for autism. We used savings to do this. We are privileged to have had that choice. We used Help4Psychology and paid £2.5k. This helped us get confirmation our child was indeed autistic, helped us understand our child better and shut down any subtle suggestions of poor parenting from local authority departments. F-off!

• Time away. In the early days, I spent a week at my mum’s, alone. She cooked for me, let me sleep, was my shoulder to cry (a lot) on and gave me the in-crisis moral support I needed. It also gave me space away from parenting to do some of the research and budgeting activities I needed.

• Headspace app. I used Headspace on a regular basis to stay grounded and keep perspective. I developed some mantras. This will take the time it takes. There isn’t one way to learn. Mental health is more important than your 9 times table. 

• Gaia Learning. Gaia Learning is an online school for neurodivergent kids. The staff are amazing and they are a lifeline for families whose child is struggling to attend mainstream school. We took it very slow. My child started with a few lessons a week in February and by July was doing the full primary timetable (three lessons a day). This is an investment (we paid £143.50/week over 18 weeks) and whilst we managed to get a Gaia grant to fund a third of the costs, for those still in limbo over funding with the local authority, we had to make more financial sacrifices to pay for the rest. As it stands, we continue to hold our local authority to account to fund this suitable alternative provision, whilst we await their EHCP and figure out what is the best setting for them.

My child decided to attend school for a few days in school in July (I never thought this would happen) and I know this was partly from the confidence they gained with Gaia.

Looking back at the list above, what kept me going was knowledge and action (however small) but also community and support. 

It’s a tough road. If you are currently in the thick of it, I see you. If you have any tips to share on how you managed the most difficult times of your journey please do share. Parents of ND kids need all the support they can get.

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Katie Tucker is the author of Do Penguins Eat Peaches? and the founder of business consultancy Product Jungle. Follow her writing on Substack - More2say - a weekly slice of life beyond business.