One a day to stay OK…
The shame, the stigma. Its there. Talk openly about how difficult raising a child on the spectrum can be and you can often find yourself shamed, accused of being ungrateful for the gift that is your child, and every child is indeed a gift.
Retreat into your new world and the silence, the loneliness can eat you up inside.
I adore my son. He and his sister are the absolute light of my life. Anybody who knows us sees plain as day the unwavering love I feel and the bond we have. However it’s been a ride that’s had my own mental health in tatters at times.
Autism affects every single facet of life. At first I fought against the reality, deluding myself that development was just delayed because he’s a boy, he’ll catch up.
Then with the diagnosis there’s a grief that you just have to ride out. There’s cruelty in that process, you realise who your real friends are, who loves you and your family as you should be loved. You’ll find that those you expected to stand with you through the thick and thin just don’t and instead new acquantences quickly become pillars of strength and you wonder how you ever managed before you knew them.
You’ll see yourself age, really quickly. As one day crashes into the next you’ll feel aches and pains in your lower back from the day to day physical care demands, you’ll spot the grey hairs and the sunken eyes in the mirror from lack of sleep and worry over the future.
You’ll lash out at your spouse, they’ll lash out at you. You can’t blame anybody else so you blame each other. You may separate or you may need counselling to get on to the same page. We went for the latter. As hard as times have been, we meant every word of our vows and somehow, in the trenches of the daily struggles of special needs parenting, we managed to not lose sight of how we felt when we exchanged those vows.
We fought!
Fought for services and therapies.
Fought for the right education setting.
Fought each other and for each other. For togetherness.
Fought for respite. Accepted that we can’t always take that together and we cut ourselves and each other a break.
I fight every single day. The effort that goes into making each day a success is huge. The rigidity of the routine that Grayson so needs, the strength to keep my calm, to be the safe space, to keep my house clean and tidy amidst the chaos of our lives. To keep my mind active when I miss having a career so very much. To keep myself from tying myself in knots in bitter resentment over that. It’s all a fight.
My daily fight starts with coffee and with my one a day.
Beautiful Caterpillar 