Early morning – check my phone – message: “Looking forward to reading your next blog post today”. Gulp.
It’s Friday and I’ve committed to writing a post – every Friday. And all week I’ve been thinking about what I should write about today. Should I carry on with “what happened next” in Sol’s journey? After reading last week’s post, I felt overwhelmed by all the technicalities of having my 6-month old baby have a brain scan. And explaining what happened and the results felt incredibly clinical.
This week, I have received “I wish more parents were like you” about 3 times. You’d assume I’d feel a bit chuffed and proud of myself when I receive this affirmation but I want to assure you, none of that statement makes me feel like I’m kicking ass as Sol’s mum. I feel happy for the specialists that confirm it because I can see how frustrating it can be for them to try to help parents that are in denial about their child’s needs. If I am ONE parent that takes on board their professional opinion and implements it for the benefit of my child, then we are all making the world a better place and making a difference to a special soul – my Sol!
So Friday morning, I’d just worked 60 hours in 4 days and I was feeling pretty smashed. I booked for a facial after a long hiatus, and lay down to receive my “selfcare” (it’s the new buzz word you know). “What am I going to write about, what am I going to write?”
And then the tears came. There is something incredibly therapeutic about having someone touch me, whether it be hair, massage or facial. It feels like lying down and human touch brings my thoughts and feelings to the surface. So todays blog, instead of a clinical breakdown of Sol’s diagnosis and journey, is about being a parent of an SEN kid. This is the first time I’ve also written that Sol has SEN – Special Education Needs. Another “box” to compartmentalise the fact that he doesn’t sit in the 90% of a failing education system – oh wait, gotta put the brakes on, can’t write about that in this post.
This post is how I feel about the incredible journey I am blessed to take with Sol-man and those loving people who have knowingly and unknowingly decided to come with us. To put this into context, a little about me, Sol’s mum.
I’m a Kiwi, born in New Zealand, neurotypical (jokes on me), sister, dancer, athlete, high performance student. I studied Physical Education at the University of Otago and went into the fitness industry just as Madonna made “Personal Trainers” a thing you needed. So I have an in depth understanding of how the body works. I also took some papers in Sports Psychology and Nutrition and these have served me well across career and life. New Zealanders are the most self deprecating people I know – down to earth, not dramatic, creative, friendly. We love the outdoors, physical activity, sports, beach, barbecues and good belly laughs at the expense of each other, usually close family members. This culture and upbringing has given me some of the qualities to help navigate a future amazing life for Sol. I have a good “bullshit reader” on people – I can pick a fake a mile off. I don’t take myself too seriously but I can prioritise the things and people in my life that are important. I’m loyal – to my family and those who take the time to get to know me. This is the moment that the tears came during the “face mask” – I thought of those special people who send me an sms or kind word every few days to encourage me to keep going, keep advocating for Sol, keep my head up. It tells me that even when I don’t see them, they have me in their thoughts. That kindness…..I can’t even. (Means, I have no words).
And I guess the way I “present” myself to the world at large indicates that I am a woman that knows what she’s doing and knows how to get there. And in some aspects, that is true. If I think about how I might be perceived – organised, go getter, stoic, driven. They are all admirable qualities but the quality I have most harnassed the past few years, is EMPATHY. Because this quality is what gets me through all the challenges that I have experienced. And all the people that have shown empathy (not pity) for me and have allowed me to reciprocate, have helped me grow the most as a mother, wife, friend and person.
It’s getting kind of deep and I want to bring this back to Sol and so I’ll frame how EMPATHY has best served me. In my journey to investigate Sol’s unique view of the world, I’ve been “friended” and I’ve “befriended” many parents in the same circumstances. After this post, I may even be “unfriended” – lol. We are all learning about our kids and what they need to be the best humans possible. We are all battling an education system that demands we pay “extra” to allow our kids to sit in a mainstream class environment without accepting they need to step up too. We are all sharing contacts, information and insights into the latest therapies, education, tutors, playgroups, etc. This group of enlightened parents has been a God-send. And my empathy for those parents that are struggling to gain a diagnosis so they can help their kid move forward – three words – Don’t. Give. Up.
And there are parents that deny that their kid is unique. I’m using the word “unique” pretty loosely because I don’t want to say that having a learning challenge or social challenge is a negative thing. When it comes to dyspraxia, Daniel Radcliffe and Florence Welch have done pretty OK with it. The denial is two-fold.
1.The desire to have their kid “fit in” to what society deems as “normal”. That they can read at an acceptable level, can do math, can write, can play sports. And that’s pretty much it! These parents want their kid to have a “normal” school life, to be in a normal classroom with 20+ other normal kids and that some of the “normal” might rub off on them and then we can all breathe easy and maybe no one will notice that said kid has some learning challenges until they start to act out and then get the label “bad kid” and next thing you know they are standing on a roof ready to jump!!!! Did I say Kiwis weren’t dramatic???
2. EGO – yep, I said it. Ego is that little voice that says “You’re not good enough” or “You’re better than everyone else”. Ego also tells you that if your kid is acting up or not succeeding in society, that you are a “failure”. Ego also turns up the dial on what “everyone else thinks”. Ego sounds like this – “What will XXX and XXX think if they know my kid needs to have speech therapy”. “What will THEY think if I take my kid out of school?” “What will my parents think if I want to get my kids some extra support?”.
Once you can put your own ego aside, not worry about what “everyone” else thinks and go with your gut feeling that your kid needs some support, the journey gets really exciting. And I mean that! I’m excited about the people I’ve connected with, the information I’ve learnt, the support I’ve been given. And I’m most excited that I might just be the next “Harry Potter’s” mum.
I have huge empathy for those parents who need to navigate through societies turned-up speaker on why “normal” is BEST. I look forward to their break throughs when they realise that there is a whole world of help, support and love ready to bring them into the fold and help them create the most amazing world for their unique child. I am a product of this support and love and today’s tears during my “scrub and serum” was an acknowledgement that I am not alone and I am blessed by an incredible support network for whom I could not do what I am doing for Sol, without them. Special thanks goes out to Steve Jobs who, without his bucking the “normal” system, I would not have this lovely laptop to share my thought’s through. Peace Out.