Writing this blog is all about sharing the good, the bad and the ugly. But I want to make sure that I don’t focus too much on the bad and the ugly.
Someone once said to me that parenting a child with disabilities brings the lowest lows, but also the highest highs! Some highs brought on by the simplest of successes. Today, as a family, we had one of those successes.
The morning didn’t start off particularly well. Kiddo was insistent on time alone in his room, with the curtains closed as the light was just too bright. Never a good sign… we encouraged him to put his shoes on but to no avail. He made it perfectly clear he wasn’t going anywhere. My heart sank at this point. I was filled with so much hope for today. The weather was perfect (dry, not too hot) for kiddo to run off some energy, but he was falling further and further into himself, pushing human interaction firmly away.
We decided to go with the bullet proof method of convincing him to leave the house. Bribery. Every parent’s best friend (if you don’t use bribery I salute you). With the promise of an ice cream, kiddo slithered down the stairs and approached the car with caution. All the warning signs were there that this may end in disaster. But today we decided to soldier on. Today we decided as parents to battle kiddo’s autism head on and see what we could gain from the day. So off to the National Trust we went.
Now on these days it’s essential that if you’re planning to be socialable you meet with a family who understand your needs. That you need to keep moving at all times, and that a rather abrupt exit from wherever you are may be necessary. Thankfully we were with such a family today, and in many ways I think that’s why our day was such a success.
After an hour of gentle walking, kiddo still in his wheelchair with no desire to leave it, we popped for the promised ice cream. Inhaled within minutes as usual, kiddo exclaimed that he wanted “buggy off!”. It had happened. His sensory world had regulated. He was ready to face the neurotypical world instead. We wandered towards some trees. Kiddo adores trees. We chose a picnic spot but very quickly realised that kiddo didn’t agree. Something about that spot didn’t feel right to him, maybe it didn’t feel safe? Remembering to be as flexible as we could, we moved all our belongings across the dew scattered grass. This was it, it was here or bust. I prepared myself for a quick exit and a failed visit. Again.
But something different happened today. Against all the odds, against many a previous experience, the kiddo settled. HE SETTLED! Cautiously I began to eat my sandwiches. Should I relax? What does that feel like? Fairly sure I’ve forgotten that one… but as the minutes turned into hours I saw that kiddo was calm. He was focused. He was happy.
I took a moment today to fully appreciate the bank holiday we were experiencing, for this is extremely rare. I have to confess I have been feeling pangs of sadness seeing all the beautiful photos of families out enjoying the sunshine. But today, it was us. Gobsmackingly us. And it just goes to show that you should never give up, you should never stop trying. As my dad once said to me, you have to turn up to all your team’s matches to finally see them win.
And today we won. Maybe tomorrow we won’t, and maybe not the next day.
But that will be worth it, because today we experienced what it was like to have a “normal” family day out. And I won’t be forgetting this one in a hurry.
Thanks for reading, and never give up,