I had planned the lives of my twins before they even arrived. Not in a control freak kind of way, but in an ‘I’m taking for granted that my babies will be fine’ kind of way and in honesty, I didn’t realise I had done it until I was told it had been taken away from us with the news that Harry had been born with a rare syndrome.
Two and a half years later he was also diagnosed with Autism which didn’t come as a huge surprise but was another blow to the life I had imagined for my boy.
Honestly, I didn’t want to be a SEND (special educational needs and disability) parent. It’s not what I signed up for when I peed on the stick of wonder and the two blue lines told me that life was about to change forever. This wasn’t the change I had expected. I’d heard of ‘support groups’, I saw SEND play days advertised where parents sharing similar experiences could get together. I couldn’t imagine anything worse than being with parents you have nothing in common with other than having challenges in the life they’d never planned. No thanks. Not for me. Harry and I were going to be just fine with my friends and their children, they would be the support I needed and that was enough for me.
Only, it wasn’t. As our children aged, it rapidly became clear that the challenges and victories I was experiencing with Harry were nothing like those of my friends and their children. They could sympathise but they didn’t really ‘know’. They couldn’t properly ‘get it’. As I was blogging I got introduced to a SEND bloggers group and it quite honestly has changed my life. The other members of the group are my genuine friends, a couple of them I speak with and face time weekly. They understand our life in a way that others simply can’t through no fault of their own. There is no judgement or criticism, just a sincere empathy and love for my own wellbeing as well as Harry’s and Oliver’s. They are the community I didn’t want once upon a time. The tribe I now couldn’t live without.
Choosing the right school for Harry was another challenge. As twins, we took both boys to see a couple of local mainstream schools. This had always been the plan; my babies would go through school together, help each other with homework, have birthday parties full of little faces that would grow with my children and be a part of their lives. But as we toured the schools and saw the other children it became clear that it wasn’t in Harrys best interests to expect him to fit in to a school that simply wasn’t equipped for his needs. We visited special needs schools as well. The first school catered for physically disabled children and as we toured it we saw happy children and dedicated staff but I also saw that Harry didn’t belong there either. He’s very mobile (think – love child of Usain bolt and road runner!) and I wanted him to have at least something in common with his classmates. The second school we visited specialised more in learning needs and had a tailored curriculum to really support their students. I could see Harry fitting right in but I didn’t want him to. I wanted him with his brother. I wanted the life I had imagined for him. I wrestled with the acceptance that was never going to happen. The head teacher read my expression as I peered in to the classroom window and put her hand on my shoulder. She said “I know that no parent ever chooses to send their child to us, but I can promise we will take care of him”. I felt like she had read my mind and wrapped her arms around my heart. Sending him to that school was quite possibly the best decision of my life so far. They were fantastic and helped me to see how incredible my boy is in his own right. I never wanted him to attend a special school but then, it was never really about what I wanted was it? Becoming a parent requires a deep selflessness that no-one can prepare you for and thats even more intense when your child has SEND. He’s now at a special ed high school and the staff who utterly adore my boy feel like family to us. I love them all and they love my boy.
As with all parenting, the challenges we face change as our children grow. I’m sure my own mum would agree that even though I’m 40 now, she worries about me just as much but in a different way that she did as I was growing up. I guess it’s harder though to be prepared for the changes that await for a special needs child as the way they deal with challenges is as unique as they themselves. I take one day at a time with Harry but recently we are navigating the chopping waters of puberty combined with a medical issue. My affectionate, cuddle loving boy has become an unpredictable ball of rage. We have had ongoing and more frequent outbursts and bouts of frustration and I cant imagine how hard it is to have the understanding of a young child but be experiencing the physical, emotional and hormonal changes of puberty. Honestly, it feels cruel. He had an awful episode recently that left me in floods of tears as he had hurt one of the people he loves the most in the world. Again, my SEND friends swooped in to check I was ok and offer advice. Yvonne Newbold who is an incredible authority on violent and challenging behaviour in SEND children gave me tons of advice and added me to a VCB group full of other parents experiencing similar challenges. As with the SEND group, its full of parents who truly understand my pain and reading other accounts of the struggles of other families put my own into perspective. I was welcomed with an outpouring of understanding and advice. Yvonne commented in the thread of fabulous parents and said “I’m so pleased you’re in this group now, but I so wish you didn’t need to be” and that sums up the tone of this blog.
We so desperately fight against the things we don’t want at times. The things that we as parents cant face when actually it’s exactly what our children need. We hide from the people who can help us the most and the cling to the familiarity of the life we knew before hand. But ultimately we find our way and end up benefitting the most from the things we feared or fought against. Of course, this could just be me but if this journey has taught me anything it’s that more people feel the same way than they dare to admit and it’s the parents who truly ‘get it’, even when they are strangers, who can comfort us the most in times of challenge. The tribe that see us and accept us exactly the way we are.
If you are the mum of a child with a diagnosis and/or additional needs and you would value hearing from another mum who truly ‘gets it’ and often says what you feel too nervous to admit (plus a great community!) then sign up to my newsletter now!
If you enjoyed this blog you may also like to read:
Raising a child with autism – does it get easier?
To the special needs teacher of my son.
What I failed to see when I saw my son.
Mwah. Huge hugs to you. All of this x