Please don’t stop inviting us. (Even though we keep saying no.)

As you know, we took a year-long break from sharing our adventures here in this space.
The old blog, all our crafts, tutorials, recipes and so on, they are all stored safely in an archive, but there are just a few favourite ideas to which we couldn't quite say goodbye.

As we still very often get messages from people asking for specific articles, we thought it might be nice to share one old favourite here once in a while. This one from December 2014 was recently requested on Facebook.

Some of the information is a little out of date, but we wanted to still share the sentiment of the post. Georgie was first suspected to have Angelman Syndrome, he ticks a lot of the boxes for it, but genetic testing ruled out that diagnosis for us.

Our sweet boy is now eight years old. He is still non-verbal, but he has changed in a lot of way. He now attends a beautiful privately run school for children with profound learning disabilities. We are still working towards a "proper" diagnosis with the help of Georgie's geneticist and the many professionals who care deeply about our little guy.

Right now his diagnosis includes severe autism, sensory processing disorder, severe learning disability, and a whole long list of other things, but none of those things come even close to describe the beauty, sparkle, joy, happiness, and love that is our sweet mouse. 

I don't know how you found your way to this page, but I want you to know that you are not alone. If you are a parent of a newly diagnosed child, hang in there. Your child is so much more than their diagnosis.

I have been hesitating about hitting that publish button. This one is personal.

Parenting a child with special needs can be very lonely.
I don’t just mean the 2am bedtimes and 4am mornings, but everything in between. The little things. Very few people want to hear about cloth diapers for your six year old, or just how many times you had to change him today. In the middle of all the beauty and chaos that parenting can be it feels good to know that you are not alone, to know that our friends are thinking of us, and most important of all, to be invited to play dates and days out. And yet somehow, we all keep turning down these invitations. We all keep saying no.
It’s nothing personal, it really isn’t.

For the parent of a typical child, a trip to the park is no big deal. You ask your little one to put on their shoes and coat, and off they go to get dressed.
If you have a child with special needs its not that simple.
Dressing a child with special needs can be a two person job. Squeezing uncooperative little feet into shoes and putting any kind of clothes onto the most ticklish child in existence or a child who really doesn’t like clothes is tricky and can be time consuming.

We also need to remember a whole lot of things to bring along. Spare clothes, cups from which our children can drink, things our children will eat and drink, wipes, medication, favourite toys…

Now you think that once we have dressed our little one and packed our bags, surely we can just go to the park. Easy peasy! But it often really isn’t. By the time most little ones are old enough to walk they will be aware of basic road safety or at least understand the word “stop”. George doesn’t, and I know he’s not the only one.

There’s another thing.
It is really difficult to find a park that is accessible for disabled children or children who have special needs.
If the park isn’t enclosed, within two minutes my very speedy Georgie would be either in the road or the duck pond.
Now, did I bring that change of clothes?

Sometimes it is tricky even just going to someone else’s house. In our own home we can make sure that there is nothing fragile within reach, that anything small enough to fit into anyone’s nose is put away and that the fridge is locked. Our home works for us and allows us and our child to live a relatively normal life. In other people’s homes it’s a bit more tricky.
To be fair that vase did look spectacular when it shattered into a million pieces..

Food is another important thing to remember as a parent of a child with special needs. With special needs very often come very special eating requirements or habits, allergies and sensory problems.
Do you have any grain free pasta? Two kilos? Yes, all of that, please, oh, and can I use your blender?

And even if you plan the most inclusive, amazing, accessible and easy-to-get-to day out, even if we have been looking forward to it all year, our little loves may still end up having a particularly difficult night, a medical problem or just a really difficult day, leaving us to cancel last minute.
Now, you see why we say no very often, why it is hard for us to say yes, to do all the things that seem easy to so many people,
but even though we say no so much, please don’t stop inviting us.

We are so blessed with an incredible circle of friends who love us just as we are, who understand how hard and frankly impossible it can be some days to even just go to the park, and these friends, they keep us afloat. They just keep inviting us. And no matter how many times we say no, we know that they will keep inviting us to all their trips, parties and events. They never make us feel guilty or bad for not being able to come along. They don’t hold a grudge.
This makes us feel so loved. It makes us feel wanted and cared for and accepted unconditionally.

The special needs parents in your life, don’t let them down. Don’t forget about those of us who can’t make it to every (or any) meet-up.
So many days when we are down here in the trenches of parenting a severely disabled child, a “Can we come over for a cup of tea tomorrow? We miss you.” is my saving grace. An invitation to an impossible event, with a note attached “Don’t worry, I know you can’t make it, but I didn’t want you guys to feel left out!“, that means so much to all of us.
Parenting is hard, it is hard for all of us, not just for those of us who have children with special needs, so please, let’s lift each other up.

That lady pushing her ten year old in the swing at the park? Ask her if she wants to have a cup of coffee with you.
That friend you have who never sends you a message first? She probably doesn’t want to start a conversation knowing she won’t be around for longer than two minutes because that’s when her child will have his next seizure or need help stacking the building blocks just right. Send her a message. “Thinking of you” is enough. “Hi” is enough. Anything is enoughjust please, don’t stop inviting us. 
(We do sometimes say yes! )

(About Angelman Syndrome)

Originally posted - 4th December 2014