Not only is October Blindness Awareness Month, it’s also the month used to highlight the condition ADHD.
I wanted to use this opportunity to shine the spotlight on the challenges I face as a woman who has been diagnosed with ADHD and how that impacts raising my 13 year old daughter Scarlett, who is blind, autistic and has a severe learning disability.
Attention deficit hyperactivity disorder, or ADHD, as it is commonly known, is a disorder that is defined through analysis of behaviour. People with ADHD show a persistent pattern of inattention or hyperactivity – impulsivity that interferes with day-to-day functioning. In females, it can be much harder to diagnose, there has been a huge surge over the last five years of identification within this age group/gender. I’m really pleased to see that increasingly more work has gone into getting to the root cause of young girls who are seemingly ‘away with the fairies’ and not been written off in the education system. This movement needed to happen, as parents of SEND children, we can relate to the importance of identifying a condition or cause.
Lightbulb moments have been happening across households – I hold in great esteem the importance and now the prevalence of knowing the ‘whys’ and ADHD is no exception to this. For years children have struggled within mainstream settings, being labelled as naughty, or chatty or unintelligent. These settings can be environmentally stifling for children who have ADHD, as we know all too well. Unless you’ve got the ‘label’, the effects of lacking early intervention support start a ripple effect that travels throughout your whole life.
As adults with ADHD, the research and identification of the condition is dire to say the least. Missed during childhood. Written off as ‘just being a typical teen’ during adolescence, by the time you reach adulthood you have very little hope of getting the answers to the questions that have likely haunted your whole life.
I was diagnosed officially in my early 30’s – my journey to reaching that point started much before that. The process, which is significantly flawed, requires an incredible amount of engagement, chasing, waitlists and appointments. The route to diagnosis is a person with ADHD’s worst nightmare. You have to utilise a set of skills that people with ADHD lack, in order to get to the end result. I used to joke, that once you reached that final stage, you would then be informed that there was absolutely nothing wrong with you as no one with ADHD could get to the end of that process. It’s frightening, yet not an exaggeration!
For any parent with ADHD, raising children, managing a household and maintaining emotional health is a seemingly difficult task. Impacting nearly every facet of parenting, you need tools and resources to manage symptoms and effectively meet your children’s needs. Then with Scarlett and her very complex needs added to the mix, it’s time to enter the minefield.
Rewarding, yet hard, parenting is a beautiful thing and I’m very blessed that I get to raise two wonderful children that I can call my very own. I feel that the challenges of parenting seem to multiply in intensity. ADHD symptoms like inattention, impulsivity, and emotional dysregulation inevitably impact the day to day and the relationships we forge with our children as they grow.
As parents of children with additional needs, often adopting both the parenting and carer role, as it’s very important that we identify that as a ‘thing’, it becomes another huge weight. It is important that I reiterate, Scarlett is not the weight, but the additional tasks that come with being the dual parent/carer is the kryptonite to a parent with ADHD.
As we live and breathe navigating the world of raising kids with additional needs, being organised needs to be one of your super powers. I could literally recoil at the thought of all the missed appointments, forgotten emails, uncompleted forms, late collections. These are all fundamentals of our lives now with our wonderfully special children. For a neurotypical parent, it’s a huge mountain to climb – so for me, as a single parent, with no additional parental figure to keep this type of life admin, it’s catastrophic. Contacting people after the missed appointment, and trying to rectify your distinct lack of organisation skills is embarrassing, eating away at your mental state, thinking long and hard into the night “what must they think of me?”.
Organisational skills, or in my case, the lack of them, is tiny in comparison to my main concerns about how my neurodiversity effects my children. Emotional regulation and shaping positive behaviours I feel, are going to have the greatest impact. As a self-professed neurotic person, I know when I’ve sat down with professionals in the past to discuss issues in relation to Scarlett they must think, what a unhinged human I am. My brain is like my computer – I have 20 tabs open at all times and am never quite sure which one I’m supposed to focus on.
Remaining calm during challenging situations and addressing them in a pragmatic way isn’t something that comes naturally. ADHD fires up my brain in ways that is different to neurotypical people, so placed in highly emotive situations, where your beloved child is at the centre, deeply effects me. In some ways it’s helped me to become ‘that parent’. I shout the loudest, write the 15 page letters, contact the MP and become possessed – so much so, I’ve likely developed the reputation of being the difficult parent. I don’t want to be the difficult parent, it’s a sad state of affairs to be seen that way. After relocating to a different local authority last year, I’ve reached the stage where the LA just roll over now, as they know that I’m going fly off into a 30 minute tangent of why the support is needed and I will not stop until its done. The strengths in those types of situations, I suppose have some positives, but I don’t want my children to see me as emotionally reactive during challenging times. How can I expect to raise level headed, well rounded young people, when I don’t know how to be that myself?
Children are far more perceptive than we give them credit for, even Scarlett, with her vision impairment and reduced ability to understand and communicate feels it. Her behaviour changes, the sounds that she makes, her response to challenging environments mirrors mine. Stress and my pitiful attempts to manage it, must radiate from my soul, even without saying the words out loud – “I’m stressed and I’m not managing it very well” – she knows. She is very in-tune with people’s energy. I hate the fact that she must feel how stressed I am and that my tolerance levels reduce considerably. It is distressing to know that she feels it.
I try to cling on to the positives, yes my stress management can be poor – I’m emotionally intense with the full range of emotions – so I hope that when I radiate a positive emotion, that she can feel that too. She certainly demonstrates love and happiness in abundance.
The preconceptions of ADHD are changing and how it used to be seen as an academic condition, it’s now more widely recognised as something that effects social and family relationships. I’m quite lucky to have got my diagnosis, once you have that it puts you in a position to better identify certain behaviours and create management strategies. It also helps for people looking from the outside in to be more empathetic with your plight. Creating structure, reducing distractions, practicing self-care and trying to control negative self talk aren’t my natural skillset. Reminding yourself and implementing these practises have been pivotal in helping me to be functional with a brain that constantly thrusts me in into the realms of dysfunctional.
I do look at my happy healthy daughter, who has a brilliant setting, a great sense of self, a fabulous support package, with very limited challenging behaviours, with absolutely no mental health issues, and reflect. I must be doing something right, despite the mountains I have climbed to get her there.
ADHD and mental health
Unfortunately mental health and ADHD often go hand in hand, and I exude anxiety. Being anxious and parenting children with additional needs are a frequent pairing, so much so that its an epidemic. Through my role as a parent support worker, I struggle to recall the last time I met a parent who wasn’t anxious. Differentiating between the two is testing, to say the least.
So with ADHD and anxiety marrying up so well, low self esteem is often in tow. Not being able to shake the feeling that you aren’t doing enough when raising a child with additional needs is overwhelming – the term coined ‘Mum guilt’ is so widely spread in today’s society:
“The feeling of not being a good enough mother. It can come in many forms: We’re not spending enough time with our children; we’re not patient, loving, fun, or interested enough; we’re not offering our children the life, family, and opportunities that we should… and the list goes on. The list of ways we moms think we can fail our children is endless.
Most women, and moms in particular, struggle with the belief that we’re not good enough. We feel like we’re failing our children and failing to live up to some image of a perfect mom who’s selfless, has no needs of her own, and exists only for her children. Some of this remains as a remnant of the role women played in the family in previous generations.
Although our culturally conditioned idea of who we should be no longer fits into modern life, in which women work outside the home, our idea of the perfect mom remains unchanged. And maybe more importantly, despite our image of perfection frequently conflicts with our own well-being, we continue to shame and blame ourselves for not being who we imagine we should be.”- Recovering From ‘Mom Guilt’ | Psychology Today
If you could die from Mum guilt, I would definitely be dead by now. It’s crippling for any Mum, even without children with additional needs, ADHD, low self esteem and anxiety. It ravishes me continually and determining how to eradicate it is impossible. My biggest fear in life is that my children will have to recover from a difficult childhood, I’d hate to think that my traits will somehow contribute towards that.
I would feel guilty if I didn’t close this on a more positive note, having ADHD isn’t the end of the world, for every weakness you have a strength.
- Call it bravery or more than likely impulsivity, but Scarlett has a wonderfully rich life filled with experiences. People often remark about how she’s done or participated in things that parents with children who have sight wouldn’t do. We are adventurers!
- It would be perfectly normal for Scarlett to struggle with change and chaos given her disabilities, but she’s exactly the opposite! I think being raised by me and my spontaneous personality has really helped her to develop coping strategies to thrive with the new and exciting!
- She’s got bucket loads of energy and we match in that respect and can keep up with one another!
- We’re both nocturnal beings, so we can keep each other company during the nights when our bodies are in awake mode.
- We are both messy in equal measures! Scarlett’s zest for life is contagious. She just radiates energy, enthusiasm, and optimism. Yes, her bedroom looks like a tornado ripped through it, but each morning she emerges from the chaos with a smile on her face, ready to greet the day.
- We can both hyper focus! Love a song? Want to play it on repeat for a week? Lets do it!
In conclusion, perceptions can have a powerful effect on people. Turning these sometimes debilitating symptoms around and seeing them in a positive light is imperative. It provides us with more insight into how we may best teach to these strengths, how we can value and embrace these differences.
I love being a pair of square pegs!