I just wanted to have a quick convo here because in the last few days I’ve had 2 Moms who’ve been told that their child is regressing again.
We have no way to scientifically measure regression, or even say someone is definitely in regression. It is an observational diagnosis. Which means it can be wrong. The very last thing in a long list of possibilities is regression.
If your child is feeling poor, or in an anxious period, if they are feeling under pressure, they might just chill at the baseline. What I mean by chilling at the baseline, is she just doesn’t want the performance pressure of doing anything. Too much hard work, taking a time out.
This is not something that is solely applicable to Rett syndrome, every person in the world goes through these periods.
When someone chills at the baseline for an extended period, their learned skills can be temporarily lost. That is also natural, it is called “learned non use”, essentially it means she might have to relearn some of the skills, but because of something called “motor memory”, it’s much, much easier.
Think of learning to walk like it’s a pathway.
The more you use it, the more worn that pathway becomes, the easier it becomes. Eventually over time, you have memorised every bit of that path. Then the snows come, the path gets covered, a long time passes before you go back to the path again.
The path still exists, but it’s now overgrown with bushes and underbrush, but you still remember where you are going. For the first few times, that path is hard work again, but before long it is battered back into shape.
The natural History Study run by Rettsyndrome.org has proven that people with Rett syndrome NEVER STOP LEARNING NEW SKILLS. (sorry I feel like I have to bold that)
My message is simple.
I feel Rett syndrome is so full of easy excuses for people responsible for diagnosis.
Rett is a blanket of symptoms for people, even when the symptoms that are being exhibited are clearly not Rett related.
How many times have you heard Rett blamed for everything?
Which means we, as a family, need to be sure to go through all the possibilities we can first.
Much love to you Mums going through this s**t, again. Let’s beat down that path and prove them wrong 😉
Let me just add there are some fantastic Doctors/Health Professionals out there that are adored by the Rett community. They are adored because they don’t blame Rett for everything.
I’m happy to say Lucie is walking again, this not only shows the indomitable spirit of Lucie, but it also shows that we cannot just tuck a diagnosis in the Regression blanket and expect it to be enough.
People living with Rett syndrome are fighters, they are born fighting.
Believe in them, fight with them, be their army of constant encouragement.