Last week I witnessed the remarkable sight of my 2 and a half year old son stroking a dog for the first time. Remarkable because for a long time he has had a very real fear of dogs (see previous blog post) which, in that precise instance, was told to ‘do one’. I am still in admiration of his ability to overcome his greatest fear and it has challenged me to think about one of mine and to speak openly about how I am dealing with it.
This may sound absurd to some people but one of my biggest fears for the last 18 months has been to be in the presence of normally-developing children who are the same age as my son; to spend time with them, watching them grow and develop, talk and become little personalities, interact with their peers and siblings and seeing the relationships they have with their mums that I crave and long for. Around the time that we began to suspect something was very wrong with Rufus, a few months before he was diagnosed with Angelman Syndrome, I started to pull away from people, social occasions, toddler groups, friendships and particularly from those who had children the same age and younger. I made excuses not to turn up and we kept ourselves to ourselves. Prior to this I had been involved in several toddler groups, seen friends regularly, hung out with other new mums and spoken optimistically about how our children would be friends and grow up together doing the same things at the same time. But something changed in me when I started to realise he was different and he wasn’t meeting the dreaded milestones. On the outside I made excuses for him, saying he was lazy, a boy, enjoying other people doing things for him rather than trying himself etc etc but deep down I knew there was more to it than this and the less he did, the more his peers did. Then the next round of babies turned into toddlers and began catching up then overtaking him and there he was still just sitting there on the floor, not babbling, not crawling, not pulling up, not feeding himself, not doing anything. I felt that I was no longer able to stand by and watch these children develop and grow while my boy did nothing. It hurt too much and I could not celebrate their milestones. I became a terrible person to be with at toddler groups. I still am. When the majority of conversations at these places revolve around what people’s children are doing, most mums find common ground, laugh and complain about the ever changing stages of development and the inevitable comparisons creep in. I can do nothing else but pull away from those conversations and sometimes I literally have to walk away.
And who did this help? No-one. I was preventing my older daughter, who desperately needs to socialise with other children on a daily basis, from getting what she needed. I was taking away the chance for my son to thrive in his favourite environment, around children and adults. And I was a sad, lonely mum who was protecting herself from feeling worse but in the process was not moving forward. I was stuck.
Once the actual diagnosis arrived we drew even further inward for a short time. For a while it was a bleak place for us. We had to re-evaluate who we were, how we fitted into the complex matrix of the friends and families around us. Rather than jumping head first into our new lives as a special needs family and flying the special flag, we held back, stuck together as a unit of four, pressed the pause button and grieved. And this was okay. This time was so important. So desperately hard and sad but much needed. Then a seed was planted in my mind. A tiny seed that said,
‘It’s time to come back’.
Reinvented and freshly-labelled, we returned to our lives. Thank goodness. We entered into the world of socialising again, although we chose more carefully this time who to let in. The blog posts came flooding out, the Angelman t-shirts were designed and worn with pride and the friendships were reformed… although some had to fall by the wayside, along with our old selves. One ‘friend’ in particular who told me I was ‘living every mother’s nightmare’ quite simply didn’t get it nor was she prepared to try either. And somewhere along the return journey I decided it was time to face my worst fear and join a new toddler group. Treading carefully, I chose to join just one group at first where I felt I was safe, known, loved and accepted already and because of that, I knew my boy would be all of those things too. Some of the mums in the group are friends with children who are only a few weeks older or younger than Rufus, who I had talked with in the early days, long before Angelman Syndrome reared its ugly head. I remember our optimistic conversations well.
The fear that crippled me and took me away from growing and nurturing these friendships was still very present but in order to move on I had to face it. In spending time in the presence of these little people, I was seeing first hand exactly what my boy could have been like if he had all of his chromosomes in tact. I realised now that he could be walking, talking, making friends, playing with other children, using toys as they are intended rather than just mouthing them, climbing, running, feeding himself, doing jigsaw puzzles, talking about books. The list goes on. Every realisation of what we were missing out on hit me like a bullet. Why on earth would I do that to myself? Why endure the pain of seeing into a future that was never going to be, that will never be? Why not bury my head in the sand and just avoid other people’s children for the rest of our lives? Because I needed to move on. And what a good job I did because there was a hidden treasure in all of this that I wasn’t expecting. In spending time in the presence of these beautiful little humans, I was able to see how they interact with Rufus and it wasn’t at all what I was expecting. Yes, at times they look at him strangely as he pulls their hair or goes to grab their food but in general he is just one of the crowd, accepted as he is. I always have one eye on Rufus wherever we are so I get to see lots of beautiful moments between him and his peers. He is offered snacks, patted on the head, given toys and drinks. One of the older children even gets right in his face and offers his hair for Rufus to pull because he knows how much he loves it. This is like heaven for Rufus – a friend who actually likes having his hair pulled! One of my favourite toddler group moments though was a few weeks ago when we were packing away the toys and mats. A bunch of children gathered on one of the mats and one of them laid down and the others copied. Rufus bum-shuffled over and sat on the mat too. I suggested we sang ‘Sleeping Bunnies’ so we did. If you don’t know this children’s song, it starts with everyone lying down pretending to sleep and then there is a part where all of the ‘bunnies’ wake up (jump up) and begin to hop. At this point in the song, the little group who had previously been ‘sleeping’ all began to jump up and down. At this precise moment, a little girl next to Rufus noticed that he hadn’t jumped up with the rest of them and simply put her hand under his arm and tried with all of her strength to lift him to standing.
For me, this moment was golden. Had I not forced myself to come to this toddler group and endure the bullets of seeing what could have been if Chromosome 15 was all there, I would not have had the chance to see this beautiful, simple moment of what was essentially a friend helping out another friend. To her, that was all it was. She didn’t see Angelman Syndrome, disability, balance problems, inability to bear weight or coordinate leg muscles to stand up from sitting down. She just saw a boy who needed a bit of extra help.
And this gives me hope for his future. Surrounding him with loving, accepting children who don’t yet know the extent to which he will need ‘extra help’ but yet are willing to give it a go and at least try. I know he won’t be the obvious choice for a play date, I know he won’t be number one on people’s birthday lists and I know he won’t be seen as anyone’s ‘best friend’ but what I do know is that he is part of something and he’s on these little people’s radar and that, for me, makes facing my fear worth it.