The only way is up…

Last week, I found myself in an unusually low place, consumed with negative feelings of sadness, self pity and fear of the future.

I had felt it creeping up on me over a period of time and number of things had contributed to me feeling like this. We had had a bout of various illnesses ensuring we were all suitably run down (ongoing as I type). We had been bombarded with outpatient and therapy appointments, about five in one week, which is always overwhelming (especially as our “nearest” hospital is over an hour’s drive away in London rush hour traffic). I had been trying to settle Marigold into a new nursery two mornings a week so she got used to a busier setting. This process gave me a little taster as to what finding a school might be like in two years time, sending me into a spiral of fear about the future. The new school term started and I watched my eldest make the hard transition from the comforting, nursery-like setting of Reception into Year 1 and found myself wondering how Marigold would be able to cope with it. I missed a few social events – it is so hard to actually make it out sometimes – and felt worried old friendships were slipping away. Above all, I felt Marigold’s development had suddenly plateaued and being mobile, being able to walk, still seemed so very far away.

As the parent of a unique child, we know not to follow the typical timelines of development. We know our children do things their own way in their own time and not to measure against typically developing children. But it’s human nature to compare. Seeing babies not much older than one toddling around was a reminder as to how different she is in aspects of her development.

I spent a day bursting into tears about how unfair it all is, why Marigold has to go through so many challenges, how we as her parents have to fight for so much. I even thought about taking this blog down, as I couldn’t see what I could even write about.

But as my wise and erudite best friend of old said: “Sometimes you just need a big old b*stard moan.” (She swears.) And she is right. Sometimes all that is needed is to let the façade down and wallow temporarily. Because once you have reached rock bottom, there is only one way to go from there and week that followed was a journey to a different place.

On the Sunday night, I sent a “cry for help” message out to the Unique community to say I felt low and was struggling, how do you get through times like this? By the Monday afternoon I had nearly fifty replies of encouraging and wise words and stories of hope. Those Unique friends I have met in person sent me personal messages of support and even, shock horror, picked up the phone for a chat. Like, how totally 1980s! Through the magic of FaceBook, one Unique mum realised we had a friend in common and we actually lived down the road from each other, so we made plans to meet up for wine and to talk about school options which was an immediate help.

I realised that the network of SEN warrior parents is one of the most powerful communities you might ever come across. Parents who understand the different journey we are on and are all here with exactly the right mix of words of emotion and practical advice to help when it really matters. What a brilliant and supportive community we are privileged to be part of.

On the Wednesday I watched an incredibly moving and thought-provoking documentary by Sally Phillips on “A World Without Downs”, which tackled the ethics of pregnancy screening and explored the science and thinking around the new screening test for Down’s Syndrome. Down’s Syndrome is something, prior to Marigold, I had had limited experience of. Like many people, I just had my perceptions. Then I had Marigold and all that changed as I met many children with DS. I know everything is a scale and this is not always the case, but the children we know are such bright, loving, charismatic children who bring a very special light to everyone’s lives….I could not bear to imagine a world without any of them, the reality being that the new screening methods could pose a real threat to the DS community. Phrases that resonated with me were when Sally talked about “the value in imperfection” and right at the end “There’s a crack in everything. That’s how the light gets in and this is where we find humanity.”

And what we need in these days is more humanity. We need to value the important role and contribution that people with disabilities and different needs play in making our society richly diverse. Imagine if we were all perfect and without challenges? What kind of society WOULD that be?

Then on Friday (this is sounding like a Craig David song) I attended a workshop at my son’s school on Growth Mindset. This is learning philosophy they are applying throughout his school, which centres around praising process rather than outcome, learning through mistakes and understanding the brain is a muscle and that if something is an effort, this is a good thing. The trainer talked about how the brain is malleable and always learning. Neural pathways are like trying to form a path in a field of grass, the first time you tread it you can barely see it, then over time and with lots of walking, you form a well trodden path that becomes easier to follow. Growth Mindset is about understanding that intelligence is not fixed. Effort is good: to succeed you need to work hard, that the process is as important as the outcome. When children have a growth mindset, they take on challenges and learn from them, which increases their abilities and achievement.

I don’t know what learning challenges Marigold will have come school age. I should imagine there will be some, maybe many. But already, I can see her growth mindset as she perseveres with all the tasks she is set by her therapist, practicing and practicing until she gets them absolutely perfect. Her therapist often says she is her ‘best student.’ When it comes to marks for effort, Marigold is top of the class.

So starting the week on an all time low, I finished it feeling in a different, more positive place, once again reflecting on how lucky we are to have been blessed with a little girl like ours, who teaches us so much and makes us better people in so many ways, hard sometimes as the different challenges may be.

Then, this week, as if my magic, she started walking.

But that, my friends, is another blog.

Some words of thanks; to the Unique community for your support, to some very special SEN mum friends, oldest and bestest friends who despite their own challenges are always there to listen to me moan and as always, to my rock Sunil, who indulges my break downs and always makes sure there is an emergency half bottle of Rioja in the cupboard. This is love, non?

And to other SEN parents feeling low and dark and exhausted: you are never alone in feeling like this. As someone said to me, let yourself be sad, have some wine, have a bath, tomorrow is another day. Seek out support however others who understand your journey and have that big old b*stard moan.

And as someone else said to me, nobody knows what your child can achieve. It is up to us to shoot for the stars for them.

Tune in soon for the next blog: Walk This Way.