The Invisible Ones

Over the last few months one of the biggest things discussed in special needs families is the isolation. It seems families walk away, friends disappear and your child finds it harder to make friends. It's been in the last 2 years that I have noticed for us personally how hard it is. Having 1 child with disabilities is was hard add in Miss L and her difficulties and things fall apart. Every time we go somewhere I have to consider if it suits us. 3 kids is a lot to watch but add in the 2 girls needs and it becomes harder. I've learnt this year that water is impossible. Both girls love it so much they just about drown themselves in it. Large open spaces just scream for them to run away....in 2 different directions. Parks with equipment are places to fall and hurt themselves...
When we get asked to go somewhere they are times I've said yes and then spent the whole time running after them and not speaking to any parents, or worse leaving early after an incident. I've had Miss A have meltdowns at birthday parties and I've had to walk out with her.

It also has an impact at school as I'm often the only Mum right at the top of the playground watching over Miss L. Even with me right there she can get hurt and need help and without me being close things would be much worse. I then miss out on speaking to the other parents, I don't know what is going on with them and they miss out on our lives as well. I miss invites to casual get togethers and when things are organised I have no input on where they are. So if it's not a suitable place or safe it means we miss out anyway. My kids don't get invited to as many playdates simply because parents don't get to talk to me or because my kids don't know to ask other parents.

This cycle is one I've heard about from so many other families it's scary. It doesn't matter how much you reach out or try and fit in you have to be met partway. I go out of my way to text or message friends and communicate online. I am the class representative at school (and have been for 3 years) and I organize whole class playdates. I try and explain to people why things don't suit or say what we can do to make life easier. In the end though adjustments will be made. I can see why so many special needs families are trying to connect with each other, in the hopes of finding someone who understands. It can be so lonely and frustrating when simple things become so limiting.

This year I will have Miss A at school 5 days a week and I know the pick up and drop off process will be even harder. Miss L is hard to manage as she loves to run and with a tired school girl as well who knows if we will manage a chat or play at the end of the day. One can only keep trying though right? Here's to a year of reconnecting and friendships staying on track.

                                              A meltdown, when it all gets too much.