Mental Health - The SEND Parent Edit.

As World Mental Health day has just passed, I thought it may be a good time to offer some insight to the emotional highs and lows that come with being an SEND parent, in the hope of reaching out to someone who's struggling. There's a lot more buzz about mental health and wellbeing than there used to be. I've lost track of the friends and family I've spoken to who have really struggled since covid in different ways and for a variety of reasons. I remember when Alba was a couple of months old and we were in the first lockdown. At her midnight feed I was checking the death toll and covid numbers. Every. Single. Night. I'd long to see the numbers start to drop off, hoping we'd be told we could see our loved ones again. I was so desperate for some support, both physical and emotional. I soon realised this wasn't a healthy habit, and knew for the sake of my own mental well-being, I had to stop checking the figures.

I'v always been a bit of an anxious person, but nothing prepared me for the anxiety and darkness that fell after having a newborn just as a global pandemic hit. Looking back now, I have no doubts that I suffered with postnatal depression and anxiety. I'm pretty confident I wasn't alone, and I'm sure more mums suffer in 'normal' circumstances but wouldn't/couldn't admit it or just assume their feelings are normal after having a baby. I never had that immediate rush of love for Alba that people talk about, and i'm pretty sure it was down to the excessively long and unpleasant labour and birth. I remember reading a thread on Facebook when she was a few days old - a fellow new mum was asking if it was normal to want to kiss her baby's face all the time. I just didn't get it, and thought she was the weird one not me. Looking back now I can't imagine EVER not wanting to kiss Alba aaallllll the time, and I couldn't possibly love anyone more than I love her (sorry Dan - it's a different kind of love!). Those particular feelings didn't last long, and I was soon totally consumed by overwhelming love and was absolutely terrified at the thought of losing her to Covid.

That first year was a definite emotional rollercoaster that I'm sure any new mum can identify with, particularly those who gave birth just before or during the pandemic. Life started to look like it may get back to normal, and I was so looking forward to sharing Alba with the world and doing all the things I'd spent 9 months planning. We started going to baby groups and it felt like therapy for me, watching her finally interacting with other kids and seeing her little face light up. It really felt like normal life was returning.

Then I started to realise the other babies were doing things she wasn't, like pointing/waving/passing things to their mums. I tried to convince myself it was because she was a 'covid baby', knowing full well that room was filled with fellow covid babies. I began to find it so difficult going to those groups that I just stopped going altogether. Watching those other kids became harder than sitting at home just the two of us.

When we eventually saught some advice and I took Alba to the GP, we had various referrals for her. I think that's when my mental health took a real dive - suddenly Alba's development delay was real, not just something I'd hoped she would grow out of. It was real enough for her to need eye tests, hearing tests, physio, paediatric referrals, additional development reviews and so many professionals suddenly entering our lives. I felt even more alone than I had before, watching all Alba's little friends skip along with their own development journeys. I wasn't sure who to talk to or where to seek help, even if there was any help available. You see families with disabled kids and kids with additional needs all the time, and it looks as though they're just cracking on with life. I now know a very different side to that of an outsider, but at the time it felt like a hugely isolating world and one I couldn't see a way out of.

After that initial GP appointment, the health visitor came to the house to do an 18 month review on Alba. It was the first time I had had to admit to all the things she wasn't doing that were typical for a child her age, and I wasn't prepared for the emotion that came with it. Having to sit and say 'no' to an entire list of 'can/does she...' questions hit me harder than I ever could have imagined it would. I knew she was behind, I just wasn't aware of how far. The health visitor assured me she was with us, there for support when we needed and would make sure Alba got all the help she needed. My overwhelming emotion was sadness and grief and I was almost sobbing by the end, but there was a tiny glimmer of hope that someone may be able to help. I didn't hear from that health visitor again for months, and I was the one who reached out. I am fully aware of how broken and stretched the system is but I still find that totally unacceptable. Seeing how visibly upset I had been at that meeting, I would have expected a follow up phonemail or even email just to check in. But nothing came.

When she eventually came back months later, she apologised and admitted she should have done certain things differently and that this time she really was there for anything we needed. As expected, these were also empty promises. I was offered CBT or for her to come and chat to me but I knew this wasn't what I needed or wanted. For me, knowledge is power and not having the knowledge about Alba was and still is one of the most difficult parts about all of this. Knowing there wasn't much I could do about that, I knew the next best thing for me was to find someone else in the same situation.

I have always been open about how thankful I am for having mine and Dan's families and some really wonderful friends in our lives. Their support genuinely means the absolute world, but nothing compares to the support of someone going through the same thing as you and feeling all the same feelings, no matter what you are experiencing in life. A friend suggested we tried out Allsorts - a charity that supports families who have kids with additional needs and disabilities of varying levels. I went to a few of their toddler groups with Albs and found it difficult to know how to interact with these parents. There were kids there with Down's Syndrome, Cerebral Palsy and others who phyiscally looked totally 'normal'. How do you spark conversation somewhere like that? "Oh hi, so whats wrong with your kid?". I exchanged a few words with a couple of mums but in all honesty I didn't want to be there. I wanted to be back at the baby music class with my typically developing baby, not part of a group run by a charity. I didn't feel like we belonged there, I didn't want to belong. But as I've said before, this is a club that nobody asks to join, and we're signed up to lifelong membership. This journey of acceptance is long and slow.

I now go to that baby and toddler group almost weekly and can honestly say I feel like we belong there and I look forward to Tuesday mornings. I can chat to those mums about funding, chasing Paediatric secretaries, ridiculous waiting lists, genetic testing, MRI scans, blue badges etc. I can't talk to my other mum friends about this stuff because it's not part of their world. I'd be talking at them and I know it can all be terribly boring! For me, the saviour for my own mental health has been finding this group, along with Facebook groups and online forums for fellow SEND parents.

We both have bad days, and some weeks this can be every day. It takes the smallest thing to remind us of the life we're living and how different it is to the one we imagined and now long for. A few weeks ago we went to a relaxed performance of Gifford's Cirucs and I felt so lucky that it was an option for us. Then that evening I cried my way home from the supermarket because it felt so unfair that it should even have been an option for us. But along with these bad days come many good ones too. Alba has taught me so much and being her Mum has made me re-evaluate many things in my own life. There are people I thought were friends that I no longer hear from, but others who have resurfaced and offer support and tell me how gorgeous Alba is (what mum doesn't want to hear that about their child?!). There are people who seem to be unable to value what they have, and cannot read the room when complaining about their kids. At the moment, I cannot be around them. I am not putting down their struggles or invalidating their feelings, but emotionally I am not in a place to be able to handle it. I want to fill our time with those who love us, show us kindness and check in every now and then - those are the people I know I can offer those things back to. I am grateful for many things, and find beauty in simple things I didn't before. I am far less judging of others (not always, but something I'm getting better at) - you NEVER know what is going on in someone's life. I've got an office job in HR which I would never have imagined doing, but it fits so well around family life and appointments, and my manager is an absolute superstar. And most importantly I never take anything for granted when it comes to Alba. I do have days where it all feels A LOT, but I always try to review and re-ground myself. I enjoy getting up before Alba and Dan to pack her lunchbox for nursery. I love choosing her outfits and lap up the compliments she gets about them. I hold on a little longer to every snuggle. I feel so lucky when I'm on the sofa in the evening and I look around at all her toys, the crumbs from her biscuit, her shoes sat by the door and her little animal magnets stuck along the radiator.

Life as an SEND parent is bloody hard. It's the most loopy, gut wrenching, adrenaline filled rollercoaster ride and I'd be lying if I said I wouldn't change it for the world. But it's brought a whole new perspective of life and the world and for that I think I am grateful. The lows are incredibly low, and on the days I'm told "I don't know how you do it", I want to respond with "Neither do I". But as you're all aware by now, Alba has a smile and giggle that can light up the darkest of days.

I want to urge anyone who is struggling with anything to reach out and find your gang. It's unlikely that you are alone in feeling the way you do, and finding those who feel the same is just an absolute game changer. Never suffer in silence. My ear is always available to anyone who needs it. And Alba's always here for a snuggle and a giggle - I promise you her smile will make an immediate difference x