Parenting Neurodivergent Children

by Jacqueline Henry, Royal London

In 2015, when I discovered I was pregnant with my first child, I had grand plans for how I would parent. There would be minimal screen time, my child would eat nutritious home-cooked meals, and our life would be picture-perfect. However, when my son was born, things were challenging. He slept for only an hour at a time and constantly cried to be held. We told everyone that everything was great and that we were happy, but in reality, we were struggling and too proud to ask for help. We adapted our lives to revolve around his schedule. We thought he might sleep better once he started eating solid food, but he gagged and vomited at every meal and could only handle silky smooth purees. We assumed we were doing something wrong and just had to figure it out, so we again changed everything we did to revolve around his schedule.

My son began to talk at a very early age and was able to speak in elaborate sentences. He taught himself to read at the age of 2 and by age 3 was reading entire books aimed at much older children. However, he had difficulty with physical movement and appeared to be clumsy and accident-prone.

When he started preschool, his teachers advised us that his reading ability was unusual for his age and that he also walked on his tiptoes. He was exhibiting habitual behaviour, had frequent meltdowns, and struggled with changes to his routine. They suggested we have him assessed as these were traits on the autism spectrum. He told me he felt different and that he didn’t think his brain worked like the other kids in his class. We knew we had to help him understand himself.

That began my journey into understanding neurodivergence. Up until then, I had only a passing understanding of autism, ADHD, and dyslexia.

We had difficulty getting my son assessed publicly as he was meeting his milestones, making eye contact, and engaging in imaginary play. He was referred from an Assessment of Need to the Children's Disability Network to Primary Care Services. They all said he needed Occupational Therapy, Physiotherapy, and Psychology services, but they were reluctant to give any diagnosis. Fortunately, I was able to secure a private Multi-Disciplinary Team who assessed him at school, gave him cognitive testing, and conducted interviews with my husband and me, as well as speaking to him directly. He was quickly diagnosed as being Autistic with high intellectual capabilities.

We were given a list of recommendations and services that he would need to thrive. We embraced this positively as we now knew how to help him. We discussed his diagnosis with him and became a neuro-affirming household (we try our best every day, but there is always room for improvement).

My other son, who joined our family in 2018, was a completely different child in every way, but we also noticed that he had his own particular ways of doing things. We thought it might have been due to spending some of his most formative years in Covid lockdown and that he might settle once in school. In fact, school showed us that despite their differences, we likely had another neurodivergent child, and we are currently on the journey to diagnosis for him too.

The lesson for us was that if you meet one neurodivergent child, you’ve met one neurodivergent child!

As we interacted with other neurodivergent families, we began to appreciate all the amazing ways our family is different and uniquely ours. It also encouraged me to start a Neurodiversity Support Group in my area, join an advocacy group for supporting gifted children, set up a parenting and carer group in Royal London Ireland, and join our DAWN Steering Group.

I’m far from an expert, but what I can offer is my lived experience of what helped us.

Here are some of the lessons I’ve learned along the way:

• Accept that things may not be exactly as you planned, but love your children exactly as they are.

• Try to understand their unique strengths and challenges, their diverse perspectives and abilities.

• Create a supportive environment that accommodates their needs.

• Speak about neurodiversity in a positive way. Show them examples of neurodiverse people who have made positive impacts on our world; there are plenty of great examples.

• Encourage them to communicate their needs in the way that suits them.

• Advocate for your child. Speak to their teachers and healthcare professionals about what you feel they can do to reasonably accommodate your child. You understand and know your child better, so be ready to challenge stereotypes and misconceptions.

• Reach out! Hearing stories similar to your own is comforting. There is also a wealth of knowledge and support as parents will have tried many of the suggested accommodations and can give you real stories of what works for their family.
  

And for anyone who may still be reading this who doesn’t have a Neurodiverse child please remember one thing. If you see a child behaving in a way you deem to be inappropriate, maybe having a tantrum or acting up they may be neurodivergent. They may be struggling with their sensory environment, might be dysregulated or have just reached their limit from trying to live in a neurotypical world which isn’t designed for them. Be kind and try not to judge.

A child will do well if they can, we need to ensure they have the opportunity.

Jackie (Proud member of a Neurodivergent family)