When I found out that I was blessed to be carrying not just one baby but two, I never really pictured what our lives would look like beyond the Baby stage. I could envision the sleepless nights, the extreme amount of nappies that would be changed, i knew that there would be teething and all the typical milestones that would be multiplied by two but what I didn’t take into consideration was what the years would look like beyond the baby stage.
I got told “cherish them while they are young because they grow up so fast!” But no one ever told me how fast! One moment I was delivering my babies and stumbling through parenting, like a permanently exhausted pigeon and the next I’m preparing them for their 2nd year at school.
But having children with special needs is whole new ball game, not only am I their mother but I became a carer too and because of this, I never said goodbye to the last time they did something, like they last time they crawled and learnt to walk, Which may sound silly, however looking back at videos and photos, I feel sorrow in my heart that I missed this as I never knew it was the last time. I was too preoccupied with worrying about why my baby was not meeting other mile stones and so, I wasn’t ever in “the moment”
Looking back at all my old videos of my Babies over the years has made me sit back and think about so many aspects of our life. I don’t have Babies anymore, though I still refer to them as “Babies”, I have little Boy’s.
As Babies and Toddlers, meltdowns were tolerated by others, they could be disguised as “babies being Babies”. Though we still faced some judgement as parent’s, However people were somewhat understanding. Now that my Boy’s are older people seem to stare more when we go out and they are having a bad day, we get rude comments and glares and even people laughing, which doesn’t help the situation at all. People are far more judgemental now that they are older and that really bothers me.
It doesn’t bother me about what people think about me and my parenting skills, it bothers me that people are judging my Boy’s and are making assumptions. If it’s one thing I can’t stand in life, it’s people who are mean to Children.
Not too long ago, when I took my Boy’s to our local Mall, Michael was so overwhelmed and started making obnoxiously loud noises while walking with me. As we walked through the crowd, I could see everyone looking at us in disgust, as if to say “oh, please shut up!” Michael obviously noticed too and tried to run away from me, he would’ve been successful except I’m a fast runner and am always on High alert when we go out in public so I’m prepared for when he trys to bolt off.
I was able to sit on the floor in the mall with my legs wrapped around his body while I gently sang to him to calm him down, again people were looking and pointing discussing what they were seeing between each other, like we were circus animals or science experiments, but im used to it so I paid no attention and continued to help calm my Son.
No one ever told me that I’d have to sit on the floor or a mall, rocking my child and singing to him just to calm him down, this was not in the brochure, not what I had envisioned. Now we have tried numerous ways to help give my son deep pressure as well as helping him with his vestibular sensory input, but unfortunately they don’t always work or are not practical all the time. So for the time being, My body weight is what my son needs to calm him down.
But what will this look like when he is 10, 15, 20 and still needing Me to help calm him? I mean, yes we may have strategies in place for him to use and not have to rely on me, but what if they don’t work one day and I am to be found on the floor of the Mall with a 6ft 18 year old rocking him during a melt down?
No body told me that I would worry about their future, in a way that is different to how a neurotypical family would worry. I mean yes, all parents worry for their child, but at some point you know that they will be fine out in the big world on their own. But for us with neurodivergent children, we worry a whole lot more and for things that seem so minuscule, to the outside world.
The most important thing we worry about is when our time comes and it is time for us to say goodbye, how will our children cope? Who will be there to hold their hand and continue to support them, the way we would? It is fear that ALL parents.of children with additional need worry about.
So for now, I will continue to advocate for my children. I will continue to encourage them to reach their goals and I will continue to teach them how to manage difficult situations and ways to deal with things that are not harmful to themselves or others.
However, I ask you, to teach your children empathy. Teach them to be kind to people, regardless of their abilities and the importance of inclusion.
Elle
Our Autism Journey 