I can honestly say that I've lost count of the number of times I have changed my son Brody's nappy in our car boot. Trying to shield him from passers-by, some of whom almost tut at the fact that I'm doing it. Like I want to be doing it.
As someone who lived with ADHD for over two decades without knowing it was the cause for various struggles, situations and feelings, it felt like a blessing and a curse to be diagnosed. Adult ADHD was only officially recognised in 2008 and has often faced questions over whether it exists, overdiagnosis, underdiagnosis, misdiagnosis and every other slur under the sun
That's not easy to come to terms with. I love Brody with all my heart and I know that everything happens for a reason. But sometimes I wish I knew what that reason was. No diagnosis means no prognosis after all. Still, having others to talk to who can relate really helps. It can make you feel less isolated in a world of unknowns.
Or at least if they don't know the answers straight away, they will in the end. It's not easy to process the reality that they can't always figure things out. That there are unknowns and sometimes - no matter how many tests - some syndromes are so rare they are a needle-in-a-haystack hard to find.
Now that Brody is nearly 5, I have finally got used to the fact that Global Development Delay (GDD) doesn't mean "may catch up" for us. It's forever. And because he is still primarily undiagnosed, despite an autism and epilepsy diagnosis (as well as a few others), GDD seems to be moving on to a new "catch all" term - learning disability.
If I have learnt anything in raising a child who has severe disabilities and complex medical issues but with no diagnosis for his condition, it is that I cannot do this alone. It is too big a job.