Parenting has its ups and downs. Parenting neurodivergent children without supports and in a world made for neurotypical people can feel very overwhelming.
You might sometimes struggle with hard weeks that become months that wear you down. Feeling like you are constantly lurching from one family crisis to the next. Feeling like you have no idea what you are doing and you are ruining your child’s life. Or in the dark moments like they are ruining yours. And the fear creeps in. Fears you don’t say aloud. For your future. For their future.
I’ve been there a few times in the past six years. I know that feeling, the fear and the overwhelm. It sneaks up on you and then bam! You’re drowning in parenting, and worry, and you have no idea what you’re doing, and maybe you’re yelling or crying a lot.
And it’s shit. It’s all shit.
You just wish for a fairy godmother to come and rescue you. Or at least help you hide in bed under the blankets for a few weeks.
That fairy godmother never comes to my rescue, but I do have some thoughts on surviving those difficult times. And maybe turning a corner and walking away and out the other side…
Everyone needs sleep.
I always start with working out how to get more sleep when things get hard here. Being tired impacts on our ability to cope with frustration, manage transitions, deal with sensory overload, listen, and manage our impulses. In my family that means we co-sleep, offer medication, and pay more attention to bedtimes. What helps everyone in your family sleep better? When you feel you’re in crisis, start there.
Remember that if your child could, they would.
Trust that your child is doing the best they can right now given where they are in their development. Just because most of the time they are able to cope well with a change of plans, doesn’t mean that they have the capacity to always do this. Interactions and behaviours that are hurtful, risky, or frustrating are a sign that we need to make changes to our expectations or increase the support we provide our children. There is a saying that ‘behaviour is communication’ but sometimes as parents when we are struggling, we think it’s communicating ‘I don’t love you’ or ‘I don’t want to’. This isn’t true.
Focus on the present, not fear of the unknown.
When you are becoming distressed because you feel like your child will always [_insert difficult behaviour here _] or will never [_ insert future goal here _], it’s time to hold up a big STOP sign in your mind. It is impossible to predict the future. Children are constantly changing and developing. Try to let your fears go for now, and focus on this moment and how you can support your child to be their best selves.
SLOW everything down
The parents at Respectfully Connected write about this often because it is one of the best things you can do to get through those really hard weeks and months. Cancel social engagements, extracurricular activities and anything else that could be stressful. Neurodivergent children often experience a build up of stress that occurs over time and becomes toxic. Decompression time is really important to help your child (and you) move out of hypervigilance and fight/flight mode.
Problem-solve with your children
This is something I often forget when I’m deep in desperation and exhaustion. Communicating with my child how I am feeling and asking them how they are feeling is so valuable. Asking what they think is the problem and how we can fix it together is important, including with young children and children with cognitive or communication differences. Sometimes the problem and the solution is not what we think!
Remember, your child isn’t neurotypical.
‘Hello, I know this‘, you’re saying. But have you really accepted that your child is autistic / ADHD/ disabled? Are you fully on-board with their development being different to their neurotypical peers? Or are you expecting them to behave, eat, move, play, think and communicate like a neurotypical child? My worst parenting days are often about my expectations of my children to do things or act in ways that they just can’t.
Don’t look for quick-fixes.. especially quick-fixes that are all about fixing your child
When I’ve been at rock bottom and wished for that magic fairy godmother to rescue me, I have called psychologists and paediatricians asking for help to get through the crisis. Doing their job, they have offered help in their professional context and I’ve walked away with prescriptions, behavioural strategies, and referrals for more therapists. Looking back I can see that rest, time and good support was a much better solution than ‘fixing’ my child.
Find safe people for support.
Find someone to talk to who will help you reflect, encourage you, empathise, and if you want, help you find solutions. It’s not helpful to talk to someone who will increase your panic, or make you feel like your child is wrong, broken and horrible. It’s definitely not helpful to ‘vent’ in huge online groups with hundreds of people you don’t know or blogs where your child isn’t given anonymity – firstly because you get hundreds of people reaffirming how hard it is to be an “autism mom” or “special needs parent” and also because your child has a right to privacy, especially when it’s about their most challenging moments.
Think about what you need.
What do you personally need right now to cope? Getting to watch an episode of your favourite TV show, a few hours off of parenting, coffee and a hug, an uninterrupted shower? How can you make it happen? I am really, really bad at doing this. Maybe you are too. But a tiny bit of time to replenish your reserves makes a difference for everyone.
This shall pass…
Looking back, I know that those really dark times we’ve had were about a multitude of things coming together – developmental changes, health needs not being met, family changes, my reserves being low, sickness, losing supports, changes of seasons etc. Small shifts and changes naturally happen to these things over time, and we all struggle on and work things out together. Then one day I realise that things feel lighter, and maybe a little sunny!
Make a plan for next time
My family’s most difficult months have been challenging in ways I can’t articulate in a public blog, but which have made me really panicked whenever we have a bad day or week. A very good friend with older neurodivergent children once suggested that I make a plan for next time we are ‘in crisis’ so that inbetween I’m not living with the panic that things will be terrible again. I spoke with a few friends I trust who helped me work out a plan, and recently when we saw the signs that one of my children was struggling and I was getting tired and frazzled we just started putting it in to action. Ours looks likes this:
- Organise to have a half day to myself each weekend and when possible an hour every evening.
- Increase Child A’s sleep medication for 2-4 weeks, co-sleep with child A and C, and go to bed early each night
- Cut down to 1-2 outings a week
- Call nana and book in a special playdate
- See if our carer can increase their hours
- Talk with a friend about what’s going on in case we’ve missed something
- Eat more chocolate
- Wait 6-8 weeks, this will pass!
What helps your family through those hard parenting weeks and months?