Not your typical parent/teacher conference

Today was my first parent/teacher conference!  I feel like I went through a rite of passage and am now REALLY, fully an adult.

The meeting was only supposed to be 20 minutes long.  But when there are 14 people in the room, all of whom have something to  report, that timeframe becomes a joke.

And I’m not exaggerating.  14 people were in the room – therapists, psychologists, social workers, paras, parents.  Each and every one of these people discussed how much potential L has, how very smart she is, how sweet and loving she is.

Turns out she creates a bit of crowd everywhere she goes at school – and not just because she is rarely without at least two adults by her side throughout the day.  Kids flock to her – they want to hug her, help her, play with her.  Young children are drawn to her.  I’m not surprised to hear this as I see it happen everywhere – at the laundromat the other week, two girls started following Lily around as she wandered aimlessly from washer to dryer and back again.  They wanted to touch her hair, sing to her, interact with her.  Lily loves this kind of attention.  And she usually reciprocates the hugs and kisses.

This kid is walking love.  Pure and simple.

Back to the parent/teacher conference where we discussed all things Lily.  The therapists informed me of her progress, of her ups and downs (which are constant, unfortunately, and part of what is expected of her diagnosis), of her struggle to communicate, her struggle to sometimes swallow or walk a straight line or climb a stair.  But she’s a trooper and even though she may be frustrated and/or tired, she tries and tries.  I updated everyone in the room on the numerous doctors appointments we’ve recently had – what the swallow specialist, neurologist, Rett specialist, dentist, and gastroenterologist had to say about sweet L.

And we were only supposed to meet for 20 minutes?!  Ha.  We were in there for an hour and a half and could have kept going.

I walked away from that meeting confident that my sweet kid has a loving, supportive, hard-working and extremely knowledgable group of people teaching her.  And felt so grateful.

 

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Differently-abled people are still abled-people doing things differently

I read the above line while perusing blogs written by people with dis-abilities (primarily autism).  I’m always on a quest to better understand my sweetie and what motivates her, what makes her feel comfortable in her own skin, what makes her feel confident.

I remember getting one of the best pieces of advice from Lily’s very first ABA therapist, Ann, shortly after Lily got the autism diagnosis.  She told me something along these lines… “Lily needs time to be Lily.  If she wants to flap her arms or stim in any other way, give her the freedom to do that.  It is a part of her and you want her to feel completely accepted.”

I completely accept my child, stims and all.  I see her as an asset – not just to me, but to everyone she touches.  She has made my life so much more meaningful.  And I’m so very proud of her.

I’m also lucky that she’s surrounded by amazing therapists who see past the Rett and the stims.  They all see a smart, sassy little girl with a great sense of humor who loves to be tickled, sung to and danced with.  They see a child who is quick to learn, and they realize that there are some days when L just doesn’t have the capacity to do certain things, even though she really, really wants to.  I know that one day, she will be able to do anything she wants. She is THAT determined.  (So am I.)

 

Supergirl!

Supergirl!

 

 

Wrapped Up

Wrapped Up

What is that saying? Everyone is the center of their own universe? Well, maybe in my case Lily is the center of my universe.  But generally speaking, so many people are so focused on themselves and their issues that they can’t see past the end of their nose.

I have always lived my life in service of others.  From a very early age, I was interested in, and genuinely concerned about the well-being of others.  I was the kid who would make Christmas and Hanukkah cards for the toll collectors when we drove into the city on Christmas Day (though I was always too shy to hand them out).  I am still this kid.  I walk around and see where help is needed, and I help.  Whether it’s offering my seat to a pregnant woman on the subway or helping an elderly person with their grocery bags, helping others – and sometimes (especially when they’re strangers!) not asking for anything in return – has always been deeply engrained in my being.

It is because of this that I often have a difficult time trying to reconcile the selfish and sometimes hurtful actions and words of people who are near and dear to me.  Let me be clear.  I realize that I am not the center of their universe.  But if someone sees me struggling, offering me a ‘how can I help?’ instead of giving me a look of pity would go a really long way.  I don’t need pity.  I need help.

The pity, the ‘I don’t know how you do it’ comments, the watching me struggle and not offering a helping hand or just the plain old silence of an unanswered email or an unfulfilled promise – these things sting me so deeply.   And I can promise you that these kinds of actions, or inactions, sting others as well.

Have compassion.  Take your blinders off.  Realize that there is a whole lot of things going on around you – some of it miraculous, some of it sad – and see if there’s a way you can help grow that miracle, or ease the sadness of another person.

‘Serve. Love. Give. Purify. Meditate. Realize.’  This is the motto of Swami Vishnu that I strive to live by – though I have an especially hard time these days with the ‘meditate’ part.  I, too, am a work in progress after all.

Om tat sat.

Awareness Raising

I was a busy lady in October.  Ok, I’m always busy.  But October was especially crazy as it was Rett Syndrome Awareness Month.

From articles in the NY Daily News to Facebook posts and participating in the Strollathon with my amazing family and friends, I was on a mission to provide a voice for all the girls who don’t have one.  Below are some of the clips I wrote in October about this monster of a disorder.


 

Facebook Post October 1:

Today marks the beginning of Rett Syndrome Awareness Month. I will try to post daily on this topic.

First post is about my Lily, who developed normally, if not a bit advanced, until she was about 14 months old. Then she started regressing.

After almost two years of getting incorrect diagnoses – from autism to a rare form of epilepsy, we finally got an answer as to what was happening to this sweet kid, shortly before her 3rd birthday.

Lily had so many words for a baby. The words are gone now but I know that they will come back.

Facebook post October 4

Don’t ever again take for granted your ability to hold a cup, use a fork, tie your shoes or speak your mind. These are just some of the things Rett Syndrome steals from our girls.

Facebook post October 5

Team Lily – top fundraiser for the NJ event!!! $10,000+ raised by my amazing friends and family. Thank you all for making this day so special for me and Lily.

FB post October 7

Something to keep in mind about parenting Rett Syndrome or any other developmentally diferently-abled sweeties, these kids give us just as much joy, if not MORE joy, than the neuro-typical child. We parents of special needs kids revel in every inchstone they accomplish. We are their cheerleaders, their advocates, their biggest fans. I’m truly amazed – every day – by my sweet little girl. She is so strong, so kind, so smart. It blows me away.

Bella faccia

FB post October 11

Girls with Rett Syndrome work HARD. Physical, Occupational, Speech, Behavioral, Augmentative – you name a therapy, Rett girls rock it. Lily goes to an all-day preschool where she receives numerous therapies throughout the day. And as that’s not enough, she has after school therapies from 4-7pm – every day. She’s the hardest working 3 year old I’ve ever met. And she does this all with joy and grace (well, most of the time at least). Here she is below, working with her OT, Lynda…Lily and Lynda

FB post October 16

Rett syndrome is spectrum disorder – some girls are only mildly affected. But most girls cannot walk, talk or use their hands in a meaningful way. My Lily walks (and even runs), has some language (which comes and goes) and some hand function. I guess you would say her symptoms are on the milder side of the spectrum. But it is still devastating.

FB post October 26

The odds of having a child with Rett Syndrome are 1 in 10,000. The odds were the same for you as they were for me. What does 1 in 10,000 mean? It means a girl with Rett is born every 90 minutes. It means today alone 16 girls with Rett will be born. And most of their parents won’t begin to suspect something is wrong until sometime between April 2015 and April 2016.

Let’s find a cure for this monster.

FB post October 27

Parents and researchers (now) know that most children with Rett Syndrome have greater receptive language (what they hear and understand) than expressive language (spoken language). Parents consistently report that their daughters understand far more than they are able to communicate. They see their girls laugh appropriately at jokes or things which happen to other family members. They see her eyes briefly turn toward something being discussed or a movement in response to a question.

Here are pics of Lily in which she’s telling me – with her eyes – to ‘keep singing Mommy!’ in photo 1. Photo 2 is her ‘saying’, ‘phew, I’m glad you’re singing a song I like.’

The eyes say it all

FB post October 28

Rett girls know how to keep their parents busy. At last count, Lily currently has 9 different therapists, a one-on-one para-professional (to help her at school) and at least 12 specialist doctors. Tomorrow she is seeing a swallow specialist. Next week she has a follow-up with her neurologist. And the week after is her check in with the Rett specialist. All of this is on top of her daily therapies and school activities

FB post October 30

Every stage of development brings a new set of health issues and concerns for the Rett girl. From loss of hand function and scoliosis to everything (I mean everything) in between, it is a never ending feeling of worry and anxiety for their parents.

Click here to see the 4 stages of Rett. Warning: It is not an easy read, especially if you have children.
http://www.rettaustralia.com/about-rett-syndrome/what-are-the-stages-of-rett-syndrome/


 

For those of you on FaceBook, apologies for the redundancy.  For those of you who aren’t, I hope you found this enligtening.

Lastly, here is my pumpkin on Halloween.  She may have Rett Syndrome, but Rett Syndrome does NOT have her.

Happy Halloween