“Know that people with Rett are communicating with you all of the time. It’s in when she looks at you, or doesn’t, it’s the length of her gaze, the shift of her gaze, in how wide her eyes get, in the eyebrows; it’s in the frequency or intensity of her stereotypie at any given moment, its in the moments she stops… Look and you will hear.” Denise R., Lily’s special ed at-home teacher.
Hi Dr. Djukic,
I hope you’re well.
I wanted to check in with you because a few things have been going on with Lily lately. And I think we may need to schedule an EEG to have her monitored.
Two weeks ago she had what I would describe as three Rett episodes in a row. She was present but shaking and frozen uncontrollably, at the same time. If that makes sense.
Last week I believe she had two seizures and they were very close to each other in timing. These look different from the Rett episodes in that Lily wasn’t as present and she was foaming and spitting at the mouth a bit.
Please let me know how you would like to proceed.
Thank you.
Christine Salerno
I wish I didn’t know:
But if knowing all of the above means to know this kid, then I am in 100%.
The Program Director at Rett Syndrome Research Trust reached out to me earlier this week to get my thoughts on ‘things I wish I knew the day my daughter was diagnosed’ and I’ve been mulling it over in my head ever since.
What do I wish I knew on that fateful day?
I wish I knew that Rett Syndrome is a spectrum disorder. The way that it manifests in every girl is different. Some girls walk, some girls talk, some have meaningful hand use. Unfortunately, many do not. BUT one things comes across as very clear for all girls with Rett Syndrome: they are magical, beautiful, funny, and quirky. People – both young and old – are drawn to them. And most girls are highly intelligent so intellectually, the sky’s the limit. Bottom line: Never underestimate the potential for your daughter.
I wish I knew that even though my spirit may be broken at this moment, my daughter’s most definitely is not. My kid is a fighter, a warrior, a princess. And she’s still the same sweet angel she was the day before. Falling into a pit of despair is not an option. And taking your cue from your kid about having a positive attitude is the way to go. Bottom line: Though you will have your ups and downs, always go back to staying positive. And if you need inspiration, just look at your beautiful child and feel the love they radiate.
I wish I knew that asking for help doesn’t make you weak. I’m a very independent person and I still struggle with this one. But what I’ve learned is that you need to take people with you on this journey of yours. Get yourself a strong network of friends, supporters, advocates. If they’re not comfortable with your kids diagnosis, they’re not worth having around. It’s easy to insulate yourself from the rest of the world. But that does you, and your kid no good. I take Lily out to restaurants, grocery shopping, walks around the neighborhood. And I’ve built up relationships with the managers, wait-staff of our regular haunts, neighbors to let them know that even though my sweet kid has a hard time with her hands and words, that she understands everything and wants to participate. I raise awareness about Rett Syndrome and I also ask them to help me ensure that my kid is comfortable, and included. Bottom line: Ensure you and your daughter have a strong support network.
Even a year in, I still have so many questions. The uncertainty of the future can be crippling if I focus on the potential negative outcomes. So I do my best to stay focused on the present. And ensure that I’m prepared for whatever may come (case in point, I’m working with a special needs estate planner to get my Will, etc… in order).
Life is what you make of it.
Inspiration
It’s taken a few months but we’ve finally been able to get one of the in-home therapists to visit Lily’s teachers and therapists at school to try and ensure that everyone is working on the same educational goals in the same way. And, well, I’ll let an excerpt of the letter I received yesterday speak for itself:
Very impressed by Lily’s school and staff. Lily seemed so comfortable and thrilled to be in the circle time listening to a book with other kids. She was verbalized and looking at others and smiling. She spied me when moving to her table top activity, walked up to me smiling, and leaned in.
I found Susan [Lily’s classroom teacher] very observant and knowledgeable about Lily. We are seeing much of the same things in Lily’s participation and behavior. In general, Lily is doing really well with expanding herself.
Yay!
blueberriesandgiggles 