Following on from my guest blogger’s post, here is his mum’s perspective. A big thank you to her for being so candid.
What is it like to be mum to a 2e child?
It’s daunting; obstacles seem to keep popping up right when everything seems to be going smoothly. Both ends of the spectrum seem to take turns changing – the learning disability may be sorted, but your child has a learning growth spurt and their acceleration isn’t enough.
It’s heart breaking; like the poem ‘Welcome to Holland’ describes, this isn’t what I signed up for as a mum. I thought I’d be the mum who ran her child to clubs, got to cheer him from the side line and watch him get player of the day trophies in front of his cheering team and their parents, have ice cream after to celebrate. Instead, I’m a mum, an advocate, I parent in a team consisting of teachers, SENCOs, GATE coordinators, occupational therapists, physiotherapists, sometimes paediatricians. I feel like I have to share parenting rather than being able to go it alone. I’ve had to learn a whole new language – “twice exceptional/2e”, “IEP”, “differentiation”, “dysregulation”, “joint compressions”, “dysgraphia”, “behavioural ophthalmology”, “overexcitability” to name a few. You get used to the “sorry, your child is not eligible for…” letters. Your child is just not eligible for state-funded help.
It’s lonely; we never quite belonged in any coffee groups. Why was my child not doing what the other kids were doing? It turned out a lot of parents didn’t like when my son learned to read at 18 months old – people got competitive, or told me to “stop pushing him”. My child didn’t enjoy the structured play groups and music groups I took him to; he just wanted to read, to line up the trains, or experiment with light and shadow. Children messed with the shadows and lines of trains, leading to silent meltdowns. The music was too loud, and the songs ‘boring’.
It’s empowering; you find out just how strong you are, that you have more energy reserves and more passion that you could ever imagine. You realise that failure is not an option; when you hit an obstacle, you find a way over, under, around or through it. You may feel like you suck as a parent, but no one else in the world could pull this off! Other parents say “I don’t know how you do it, I would have given up long ago”.
You learn skills you never thought you would learn; all those appointments, assessments, reading reports, researching online gives you a new confidence in your ability to go outside your comfort zone. Your brain isn’t mush after all. Heck, you’re pretty damn onto it.
You accidentally learn about the things your child is passionate about. I had never considered the beauty of the structure of the atom, and how it is replicated in the solar system, the universe and possibly the multiverse until my then-five year old pointed it out. I had never thought to consider the intricacy of the coding behind a simple website, or the beauty of a complex but streamlined code. You connect with incredible people who are experts in their fields- their passion is infectious and they are a joy to be around. Life can be more vibrant when you see it through your child’s exquisite eyes.
You learn to appreciate the smallest things in life, to have a new perspective on what really matters. You take time to enjoy every good moment, and to not sweat the small stuff. You learn to not let people or systems get you down; there’s no time for that because your child needs you to look after yourself. Just keep moving. You learn to celebrate even the smallest of successes - finding a book your child will love for their birthday, watching your child’s pride when they catch a ball for the first time, your child coming out of class with a smile on their face.
You learn to accept your own quirks. If you can accept them in your child, maybe it’s time to stop giving yourself a hard time for your intensities. It’s a freeing experience learning to openly be exactly the person you are, instead of working so hard to hide your own weirdness.
You meet a whole new community. These are people you would never usually have met in any other situation, but they are your tribe. You develop a connection based on a deep, innate understanding of each others challenges and successes. You and your child can be yourselves; you can laugh, cry and celebrate openly. Your child can be their own quirky self; love what they love without fear of other kids laughing at them; have meaningful relationships with other kids. They don’t need to worry about adults giving them ‘that look’ or taking away books or games that ‘aren’t age appropriate’, because these adults get them. Whether it’s an online or local community, you belong. This is your tribe. This tribe will keep you sane, make you feel anchored on a bad day, and give you a place to see the bright spot in even the worst of days.
If I could make one recommendation to parents of 2e children it would be find your tribe. The rest will gradually fall into place when you have access to quality information, local and online resources that meet your child’s unique needs, and you have people to connect with on a meaningful level.
Some great places to start are www.otagogifted.org.nz, www.giftedchildren.org.nz/, your local one day school, or gifted Facebook groups.
This blog is a part of the New Zealand Centre for Gifted Education’s 2016 Blog Tour. I encourage you to check out other pearls of wisdom on the tour.