Neurodiversity - being a parent of a ND child -learning to juggle

Being an ND parent of a ND child - learning to juggle

Having children and holding down a job means you never seem to be in the right place at the right time. "Free' time for yourself becomes a distant memory. The high points of parenting are many, sometimes funny, sometimes challenging and wonderful. As a parent you never know what's around the corner.

Being a parent of a neurodivergent child

After running a specialist centre for families, children and young people, and adults for more than 20 years I had heard of the key concerns that recurred time and time again trying to navigate systems. Despite being a medic at times I often did not have the answer and was also trying to work out where pathways went and how it all worked.

Some of the concerns cited were:

Concern for now and concern for the future

How do I get help and support for my child; what should I expect when I see a professional; what happens next; who do I believe; what is 'good information and guidance"..

These are just some of the concerns if you are a parent of a ND child you may have/had like myself along with many other parents.

I often hear people talking about it seeming like 'a battle to be won' and even when you get the prize of a diagnosis and/or support and guidance you remain concerned that support could be taken away at any point. You need to be literate, a communicator persistent and organised to manage the paperwork and consultations. ( Probably very good skills many employers want to). However if you don't have these skills then you will struggle to negotiate the hurdles.

Feeling different or being 'othered'

I remember being a parent with toddlers and young children and other parents claiming how amazing their child was who walked at 5 months and spoke two languages by 2! It was as if they had achieved it themselves and if my child wasn't it must be something to do with my parenting skills.

The challenge was that I had also millions of stories of the many things my children had done ( if you have met me you will know my kids are everything!) but often no one was really interested in hearing about your child's amazing feats unless they fitted into a social norm and expectation. I was delighted one of my children had smiled/kicked a ball... and lots more...

Navigating systems

3 years ago, I and colleagues published a study where we had plotted the many routes to gaining a diagnosis of Dyspraxia ( also known as Developmental Coordination Disorder) which 3-5% of children have, and the impact it has on the family.

WOW! See this.... Not one route but many many many.

Even today, parents continue to tell me the greatest challenge is knowing how to navigate the education system and ensuring their child is getting the help they need. In England for example, the Education Health Care Plan is like a unicorn, rarely seen and disappears altogether like a puff of smoke if you get too close.

The reality for many parents is that if you have a job AND also need to get to appointments with your child this can mean in the end you have to make a choice. In our study one of the parents often stopped working to negotiate the systems and support their children. This has financial implications and mostly this 'choice' lands on women... but the impact affects all in the family.

"The hospital appointments … have all been in [large city] which is a 200 mile round trip … We’re sent appointments without any explanation of what they’re for … We have cancelled appointments simply because we can’t get to them."

A diagnosis is only the beginning

"With his diagnosis, they give it [the diagnosis] to you and then send you on your way, and [you have to] work it out by yourself. Help and advice offered on diagnosis and subsequent years are limited."

Some parents are hoping when they get the 'golden ticket' of a diagnosis all will be sorted and can be dissappointed with the now what next feeling...

Understanding processes at times of change

Times of transition provide another level of stress for you. Increasing demands on your child when they move to secondary school can be a tipping point especially if your child has been in a supportive and nurturing primary school.

Getting or keeping help means often telling all the things your child can't do. Sadly we cannot celebrate the gains too loudly even though they may be wonderful. Today at least our children's voices are beginning to being included in the conversations. This was not the case 25 years ago at all.

Getting others to recognize support is required

"It was my own investigation that led to the eventual diagnosis when his class teacher was at a loss about what to do. If I had not had a teaching background, an interest in the area, and a sense that somehow my child was being deeply misunderstood, I do not think my child would have been diagnosed"

Juggling can be tiring

In our study parents reported that:

• Respondents had poor mental health, with nearly three-quarters meeting a proposed cut-off for depression. Did you read that? 75%!!!!
• More than 10 % of respondents had stopped working and another approximately 10 % had swapped full-time work for part-time work due to their child’s DCD. What is the cost to society of losing talent?
• More than three-quarters of those families with more than one child found their child’s DCD had an impact on their other children.

There is a cost to families and society

For example, the total social and economic cost of ADHD from 2018 to 2019 was US$12.76 billion (range from US$8.40 billion to US$17.44 billion, with per-person costs of US$15,664 per year.”?(Sciberras et al,2020) A social care cost of ￡4033 per patient per year and total public costs of ￡7925 and private costs of ￡7573 per patient per year has also been calculated for ADHD. (Daley et al (2015).

10 things we can do as parents to be able to juggle

1. Listen to your child and ensure their voice is heard.
2. Always believe in your child's ability to change, grow and develop. Your child today can be an amazing adult. Seek out and harness their strengths.
3. Celebrate the successes- however small they may appear to others.
4. Don't stop shouting about your child's needs but be organized in the way you do this. Keep notes. Often we have to repeat the same information again and again. Record it in one place and keep this up to date.
5. Prepare early as possible for times of transition. ( Think about what you want for 3 years' time). Consider what others think about the 'small' stuff.. when thinking about this e.g. changing for games, using new toilets, what to do at break and lunchtimes...
6. Be informed about your legal position - what does the law say your child should have.
7. Network and learn from other parents. I have learned so much from others who have trod the same paths. Over the years I have worked closely with Dyspraxia Foundation, BDA, ADHD Foundation, and other charities who make such a huge difference to many families lives. Join in and help too.
8. Advocate for your child and ask for help for yourself if you don't understand what to do and where to go.
9. Look after yourself. Don't beat yourself up.This IS very important. I hear from too many parents who are exhausted and their mental health is challenging for them. Many parents of ND children will be ND themselves. This comes with its own challenges when you are trying to get organised, and manage your own emotions as well as your children too. Take time for yourself. Parenting is a long road without statutory holidays. I think we can all be consistently inconsistent as parents - and that's OK!
10. If you are in work you do have carer's rights too in terms of support/leave at work.

The blog author

I am the CEO of?Do-IT Solutions?a tech-for-good company that delivers web-based screening tools that help deliver person-centered solutions. I am a mixed bag of experiences and skills and have 25+ years of working in the field of neurodiversity. I am a medical doctor, Ph.D. in the field of neurodiversity; parent and grandparent of neurodivergent wonderful kids and am neurodivergent myself.

The wonderful Theo Smith and I wrote together?Neurodiversity at Work?Drive Innovation, Performance and Productivity with a Neurodiverse Workforce.A few weeks ago we won the?Business Book Awards 2022 Equality, Diversity and Inclusion?for the best book. I have my 10th book coming out called Neurodiversity in Education later in 2022.

What a week I have just had! I am just leaving Liverpool after meeting so many amazing people at the Neurodiversity Paradigm Conference. A huge thanks 100% to everyone I met, chatted to, ranted to, danced with and had a drink with.What a community we are!

A big shout out to the amazing @tonylloyd and his team at the ADHD Foundation - you are all fantastic++++

What a change we can make if we all work together. Thanks for letting me be a small part of it.