Imperfectly Perfect

ADHD, we’ve all heard of it, but do we truthfully understand what it is?

I loved being pregnant, I loved the feeling of my baby move around inside my tummy, I loved the beauty of my pregnant stomach, I even loved the nausea & pain, a reminder of how lucky I was to be experiencing pregancy a second time.

On the night of Valentines day 2005, I experienced a tightening across my stomach, it wasn’t akin to contractions, it was just one long tightening that lasted for hours, there was no coming and going, there was no real sign of labour from my previous experience.

The following morning, I decided to call the hospital just to check everything was okay. I hopped on the bus with my 2 and a half year old son and their dad for a hospital check up, by this point the tightening had subsided hours ago. From there, everything happened so quickly.

I was taken for a scan and a doppler scan and in the blink of an eye I was rushed into theatre for an emergency caesarean section. Within minutes my beautiful daughter had been born 10 weeks prematurely, weighing a tiny 2lbs 9oz as a result of me having pre-eclampsia. The doctors told us that if we’d waited another 24 hours, neither of us would have survived, my organs had started to collapse and my placenta had died meaning my beautiful baby girl was being starved by my own body, the body that was supposed to feed her, protect her & nourish her.

After almost 3 months on the Neonatal Intensive Care Unit & Special Care Baby Unit, we were able bring our precious daughter home, still only weighing 3lb 6oz, however, she was extremely healthy with all things considered. I’d never felt so lucky!

As time progressed, we noticed that there were certain things that she struggled with. She was often delayed in the educational setting, her vocabulary was more delayed than her peers, she’d have constant meltdowns out of frustration and often stimmed (not that I knew what stimming was at the time!).

Her primary school often told me they had no concerns when I asked them, I started to wonder, is it me? Am I being overprotective? Maybe I needed to chill out a bit?

As soon as she started her first year at high school at the age of 11, it was brought to my attention pretty quickly that it wasn’t all in my head. She was excluded from school 4 weeks after starting. I’ll never forget that moment, the dread & shock that flushed through me when the teachers pulled me into a meeting and told me “we think she’s autistic, we can’t meet her needs so we’re going to have to exclude her”. I left the school in silence, too shocked to speak. I often wish I could go back to that very moment and say exactly what I want to say. I wish I could tell them how discrimantory they were, how they were refusing a child of an education, how the problem lies them as they’re the one that can’t meet her needs, not her for having different needs that she hasn’t chosen, how excluding someone purely based on their needs is barbaric, did they have the qualifications to diagnose her, like they did that day? Why is there not a system in place for children that may need referring to a suitable school as opposed to excluding them, implying that they’ve done something wrong?

She ended up having a brilliant education with a school that could meet her needs, not only that, they offered brilliant parental support and guided me down the paths to try and find out why she was struggling. they had an education psychologist assess her for a year, they established that her mental age was around 6-8 years old, depending on what she was doing.

Was it autism like the previous school had suggested?

After many years on the autism referral waiting list, my daughter was finally seen by an amazing doctor the day after her 17th birthday this year. After many years of it being implied that she had autism, it was established that she didn’t. However, she did score very highly on her ADHD assessment. She was diagnosed with combined ADHD, impulsivity, hyperactivity, inattentivness & distractablity. She’s currently awaiting an appointment to discuss medication options.

I felt relieved, relieved that I could now support her, relieved that we had answers, relieved that she had options to help her if she wished to try medication.

I had never considered ADHD, I had never considered anything but autism as that was all that had been mentioned to me for years. What is ADHD?

I was speaking to the doctor that diagnosed my daughter and we discussed the archaic views that people still hold around ADHD.

Although it is improving, a lot of people still believe ADHD can only affect boys, some people still believe it’s learnt behaviours, some people imagine little boys getting into trouble with the police, setting fire to things, stealing & fighting.

The truth is, ADHD is still not fully understood, it is not a chosen behaviour, it is not caused by too much screen time or too much sugar, it is not the result of poor parenting, it is not a mental illness, nor is it a specific learning disability

ADHD is a developmental impairment of the brain. ADHD does affect males & females. ADHD can be a result of premature birth & low birth weigth in babies.

I feel like there are still so many misconceptions around ADHD, maybe that’s why nobody identified it in my daughter sooner. After discussions with my daughters doctor at the time of diagnosis she explained that ADHD can present itself differently in girls than it does boys, there’s also studies into whether hormones/menstruation affect girls & women with ADHD. She also explained that there’s a misconception around ADHD & boys, some of our society still believe the age old image of “boys running around setting fire to things”.

I looked back over the years and all of the triggers hit me like a tonne of bricks, my daughter has struggled to sleep, sit still, she talks a lot and about anything, she makes verbal noises, she struggles to maintain friendships, she flaps her hands and kicks her legs, she doesn’t understand jokes, she struggles to read and pay attention to detail, she struggles to watch a movie to the end, she forgets things and repeats herself a lot, she’s easily distracted, she doesn’t loud like noises, but she’s loud, she fidgets, she bites her nails, she picks her skin, she’s always bored but always moving, she has no filter, she lacks self-confidence.

She struggles with understanding time, the most recent example, she asked if she could put something in the microwave, I agreed and advised it needed 2 minutes & 30 seconds according to the instructions, she argued that it was 2 hours & 30 minutes (thank goodness I was home!).

She has meltdowns to the point she will throw herself to the floor kicking, screming & crying, sometimes for hours at a time and there was absolutely nothing I could do to console her.

Maybe the meltdowns were frustration due to people mis-understanding her, mis-diagnosing her, which in turn meant she was getting the right support.

Since dianosis, I’ve read as much as I can, I’ve even taken courses. It’s helped me understand, which has reduced her frustrations massively. But I don’t fully understand.

In many ways, I feel like her diagnosis has helped her too, she’s stubborn and will try her hardest to defy expectations. She’s currently at mainstream college, they told her months ago that she can’t return for the next year as she will have failed her course miserably, well, she picked up her exam results this week and is going back (although, I would have liked her to go to a different college in the hope of a more positive environment) but she’s determined to prove everyone wrong. Good for her!

She is amazing, she is a fighter, she is courageous, she is beautiful, she is artistic, she is brave, she is energetic, she is fearless, she is honest, she is joyful, she is loving, she is funny, she is reilient, she is vibrant, she is kind, she is sincere….

…..she is my baby, my daughter, my love. And I wouldn’t change her for the world.

I wish the world could see how amazing my daughter is without judging her and stereotyping her based on her ADHD.

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