If there’s any advice I would give to parents who are just starting their journey with or towards a diagnosis it would be this:
The diagnosis at this stage isn’t for your child it’s for you as parents, your child is who he/she is and a diagnosis isn’t going to change that or help them in any way (other than school) it’s down to you as parents to make that change.
The dynamics of your lifestyle need to change, not solely around your child but adaptions need to be made so everyone can live in peace.
We certainly found it hard adjusting our family dynamics, with two older boys and jobs we hoped Teddie would just slot into our routine but unfortunately, that wasn’t the case.
We cannot and may never be able to rely on Teddie to make sure he has everything he needs for his day as we would be setting him up for failure, although at 5 this would be an ask regardless of an additional need. As Teddie’s parents, it’s down to us to make sure he has everything he needs accessible for his day out readily and waiting for him so when I say Teddie go get bag and shoes he knows where they will be and he’ll feel he’s accomplished what was asked of him as the slightest thought of failure can result in a meltdown.
Fight, fight, fight for your child, I often say to parents you’d never let a person physically hurt your child, so don’t allow them to mentally hurt them. There is no difference between the two when it comes to neglecting your child due to their disability, the pain and hurt are just the same.
Stand proud and be present, show the person you’re meeting with you know what you’re talking about, they may well be qualified in their field but they are by no means as qualified as you are as you live this job day in and day out!
Even on the hardest of days never let your child see how you are feeling as they will only mirror your behaviour and make the situation worse.
We have all been in the situations when at times the right thing to do would be to shout and tell your child off but you are just pouring more fuel onto the already out of control fire. I’ve perfected the inner scream down to a tea now, there are times when I’ve wanted to shout, scream and cry but as always I need to have a “happy face” as it’s my smile that clears the cloud over Teddie when he’s in crisis.
Talk about how you are feeling, everything you are feeling is completely normal and trust me we have all thought it! If you can try to attend parent workshops do, there honestly not there to tell you how to be a parent in-fact you can gain some insights on how other parents manage their routines and feel supported at the same time.
Love and support your child every day, always be their voice and never apologise for who they are.