Being The ND Parent is a balancing act between their needs and your own.
As The ND Parent - Googling resources for AuDHD parents (or even Autistic parents) yields a great range of info on parenting children who have these neurotypes. But, not too much about the life as an AuDHD adult who spawned one or more children who share your neuro type. Which is odd considering the high rates of gene mutations passed from parents to their children.
I am an Australian mum of 4 neurodiverse boys. I was diagnosed with ADHD at about age 23 and later diagnosed as Autistic at age 37. At 37, three of my boys were undiagnosed and already aged 18, 16 and 14. My then 5-year-old was on the public wait list for his Autism assessment. It was actually the difficulties he was having that sparked the chain of diagnosis for the rest of us.
The Public System
On the public waitlist, it took my youngest three years to be assessed. During the long wait, we had a pediatrician whom we checked in with regularly. Still, no other practical supports were available despite the recommendation to start seeing an OT and speech pathologist. Between the ages of 3 and 6, his window of ability narrowed significantly. He ended up in complete Autistic burnout.
ARFID (Avoidant Restrictive Food Intake Disorder
He went from eating a wide variety of foods and exploring new ones to only having a maximum of four safe foods at any one time. His entire safe foods list contains about 10 foods, and he will only eat bout 2 or 3 foods from the list at any one time. That means he might eat plain pizza bases, barbecue Pringles, and 100ml of chocolate Sustagen (prepared exactly the same way each time) daily for weeks at a time. He can taste even the slightest variation in foods, from the brand of tomato sauce to my accidentally not measuring the milk in his Sustagen precisely. Any variation causes significant distress, gagging, meltdown, overwhelm and ultimately an inability to eat at all. Often, I have to prepare his food multiple times because it's so challenging to get it exactly right. It's exhausting, worrying and expensive.
School
Initially, pre-school was not too bad. He had a really lovely teacher and was only going 2 to 3 days per week. He did have significant separation anxiety and would often cry when I left. When I had chatted to the teacher about the possibility of his being Autistic, she said she didn't see any evidence herself. That was also evident in her report to the pediatrician. Come Kindy, he just couldn't cope. He would scream and cry to the point of collapsing on the floor and wetting himself when I left him. I trusted the school when they said I was doing what was best for him. Plus, I had to work, and he needed an education and social skills.
But it only got worse. He refused to get in the car If I got him to school, he would throw down the anchor and not go in. If you're reading this, I likely don't need to tell you the toll it takes fighting this battle, wondering if you are doing what's best, every single day. He's now in his last term of Kindy and not at school at all. (Amazing neuro-affirming school enrollment accepted). I attended several meetings with the school to advocate for his needs. He needed someone to help him with toileting, someone to warm his food and assist him with eating, someone to help with library time, and someone to facilitate regular movement breaks. I don't believe I was asking too much, but the school insisted that they don't have the resources to provide the care he needs. As a result, he would go all day without eating or toileting and would return home with no library book. So, he didn't return to that school. By the time I pulled him from school, I was barely working 6 hours a week, I had gained weight, I achieved a fail/incomplete mark for two terms of my Bach Psych Science degree, I was broke, miserable and desperate. My body then decided that was the perfect time to dive headfirst into Peri-menopause! Yay! (another blog on that later).
Co-Regulating
I want to take a moment to remind you that, although I may forget a lot, I have not forgotten that there are still three of the four boys left unaccounted for. Don't worry, there's more!
Co-regulating, I love this term because they're right. Our little balls of fire or children mid-meltdown, if you will, do respond better when we, ourselves, are regulated. But...
We both know where this is heading!
The problem with it is that, as an AuDHD-er myself, his meltdowns set off my meltdowns. Co-regulation works sooooo good when I can actually do it! But the reality is, I often cannot cope with his screaming. Don't get me wrong, I'm super proud of what I accomplish during his meltdowns, but at what cost?
I'm left with absolutely nothing in the tank day after day. Then the mum guilt sets in, shit! I forgot to book Mr. 17's doctor's appointment. Sh#@*t! I still haven't met with the school about getting Mr. 15 some more accommodations. Ffs! Why didn't I check in on Mr. 19 when I was thinking of him!
It's a constant feeling of dropping one ball as you bend down to pick up the other. And the consequences are huge!
The Knock-on Effect of Late Diagnosed Parents
Mr 17, now diagnosed as AuDHD has had his fair share of rough times. It's not surprising, though. He went 17 years undiagnosed, and his sole carer was an undiagnosed mother who had next to no support system.
When he was 3, the signs were all there. He didn't speak in sentences until after age 4. The doctors put his language delay and behavioural problems down to being deaf. They said that his outbursts and meltdowns were due to his frustration with not being able to hear or communicate. Now, his behaviour was full-on! He would run away in the mall, scream, and cry about everything. He couldn't sit still; he would climb everything with no sense of fear or consequence. He would bite kids at school and wander around the classroom. He received grommets and began talking, and his behaviour changed. Looking back, I now realise that he became withdrawn from the new auditory sensory overload.
The reality is, he suffered because I was suffering. I had no idea why I couldn't keep up, why I kept losing jobs and was so burnt out all the time. I put him and his two brothers through violent and toxic relationships just trying to find someone to love me enough to be in my corner, in our corner. If I had known I was AuDHD and therefore received the support I needed, they would not have suffered as much as they did and perhaps would be coping better today as a result.
Mr. 15 and Mr. 19 both have ADHD. I do not doubt that their education, employment opportunities and mental health have been significantly impacted by the missed opportunity for much-needed understanding and support that came with my late diagnosis.
Final Thoughts
I know all parents are different, with differing abilities and access to support. But if you're anything like me, you've raised your kids alone for the most part. You've now received your (and everyone else's) diagnosis and have begun to build a beautiful Neuro-Affirming household filled with acceptance, visual reminders, plushies, fidgets, safe spaces and an Armageddon supply of backup safe foods. Re-designing your life to live more in tune with your and your family's needs isn't easy, but boy, it beats the alternative!
Please reach out if you have any questions or would like to share your journey.
Sending strength and love,
Kim.
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