Over the years one of the things I've found difficult to accept and come to terms with is recognising that Bobby doesn't get the same from life experiences as other children.
His sister Dottie is a social butterfly, she gets great enjoyment from trying new experiences, visiting new places and meeting new people. A short conversation followed by a few questions and she knows where we are going, who with and she is happy...
It's not as easy for Bobby. It takes preparation, it takes time and it takes organisation. To prepare him for an unfamiliar change he needs pictures, he needs a timeline and he needs reassurance he's coming home. We need to be prepared for every eventuality. And above all else what we are doing has to be a big enough motivator to make him want to leave his safety net, his safe place, his home.
I start with deciding if Bobby is going to get anything out of the experience, is it a safe setting, is it busy, is there any queuing, will he manage the journey... there are so many factors to decide and sometimes its in Bobby's best interest to let him stay home. This isn't me rejecting him, this isn't me not wanting the 'hassle' of taking him... this is me putting the needs of Bobby first and recognising what he can and cant cope with.
I've made many mistakes in the past taking Bobby on days out because I'd feel guilty leaving him home. I wanted more than anything for him to join in and get the same enjoyment as the other children. Selfishly, I wanted him there more than he wanted to be there.
I've witnessed Bobby reach crisis because I've wanted him to enjoy a day out that for him was total sensory overload. He's been in situations that have heightened his anxiety because I’ve wanted him to join in.
Deciding not to take Bobby doesn't mean he misses out, it doesn't mean he doesn't fit in, it means I'm learning to adapt and make informed choices to meet his needs and ensure he is comfortable. I don't always get it right, but I take every opportunity I can to learn and ensure the choices I make are with Bobby's best interest at heart.
As much as I recognise Dottie's needs are completely different and she deserves to have days out that aren't always focused around the needs of her brother; I still get the overwhelming feeling of mum guilt that tears me up inside whenever I decide somewhere isn't suitable... It's taken years of acceptance but I now recognise Bobby is most content at home, it's familiar, it's predictable, it's where he is most relaxed and above all else it's where he is happy.
Parenting a neurotypical child doesn't come with a handbook, raising a neurodiverse child doesn't come with a handbook... I chose to bring my children up in a way that ensures their happiness and brings out the best in them. That's the beauty of parenting.
Abby, Parent Carer from Marske.
If you can relate to Abby's experiences and would benefit from engaging with support, take a look at what is available locally:
Huge thanks to Abby for sharing her experiences with us.
Read Abby's first blog post for We Care You Care.
Please e-mail us, firstname.lastname@example.org, if you are interested in writing for the website to raise awareness of the realities of being a carer in the South Tees area and encourage other people to recognise that they are not alone.