Looks from strangers

IMG_7090Whether we’re walking down the street together or I’m pushing her in her adaptive stroller, we get stared at.  Some people are sly about it – they look out of the corner of their eye.  Others are overtly staring – gaping mouthed – at us.  Some days I can ignore it.  Other days, I stare right back at them.  It really depends on how much sleep I get the night before.  This issue has been a BIG topic of discussion on one of the many amazing special needs parent groups that support me and Lily along this journey of ours.

One mom (shout out to Jackie from Queens!) piped up some awesome suggestions which I want to share with parents who are on a similar journey and also for our friends/family who want to better understand just one of the many micro-annoyances that are a part of our day-to-day lives.

1) You have to stop caring what other people think. Completely. Unequivocally. From the bottom of your heart, stop caring about other people’s opinions relating to your child or your parenting. YOU ARE DOING YOUR BEST AND YOU ARE DOING A GREAT JOB! (how do I know? because we are all trying our best – that’s why we’re here on the chat board) The rest of the world just has no clue, and it is unreasonable for you to expect them to. The rest of the world is NEVER going to understand what our lives are like – it would be impossible to convey the mountains of information relating to our kiddos and we each have a different story.

2) You should keep in mind that (even if it seems like they are really really not) those other judgy, nosy, know-it-all people are doing their best too! Their best just sucks, but it’s not really their fault – no one taught them good manners or how to behave. They don’t have good tools to share suggestions in a helpful way. People often don’t think things through, they just act.

3) If you can’t beat em – join em! LOL!!!! I am a big fan of dealing with other’s inappropriate interventions with passive-aggressive techniques! If I’m on the subway and actually feel like bothering to address the people who are glaring at me and my 6 y.o. who is having a melt down I will LOUDLY remind my daughter that I’m not going to give in to her meltdown, that doing so would teach her that she will get what she wants by throwing a temper tantrum, that it would be unfair for me to not provide consistency and stick with consequences that have been pre-determined (if you keep hitting your brother I am going to put you in the stroller, etc), and that when she has a calm quiet voice and body I am looking forward to helping her and addressing what ever is causing her to feel so upset. My daughter can’t hear any of this, of course; when she’s melting down she’s in full-on fight-or-flight mode and has lost connection to the outside world temporarily. .. but the rest of the glaring people can hear me 😉 and honestly, I think they know I am talking to them, not my daughter.

This is NYC!!! There are people who smell like urine in the subways, people begging for money, ice cream trucks playing that horrific song (over and over and over 😉 lol), there are sirens and traffic and long lines, a million annoying things that are intruding on the peace and quiet of others … a kid having a moment while leaving Dunkin Donuts should be the least of their concerns! Someone who intrudes upon your life is small and petty and not worth one second of anxiety. They don’t have the right to cause you stress!!!! I do understand your anxiety, I used to feel it ALL the time, and then I just let go … one day I stopped and looked at the big picture and realized that I was so hard on myself, being critical b/c I knew my kids were disruptive and annoying to others – but I thought about what advice I would give to a friend with unruly kids and I realized that I was just not being very understanding or nice to myself. Be as understanding and caring and supportive of yourself as you would be to your dearest friend. What we do it SO HARD! Give yourself credit and take care of your self and don’t worry about what other people think.

I’m hoping that one day I can completely ‘let it go’ like this wise momma has done. Until then, I’m going to pray for as much sleep as possible.

 

Anxiety

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Adventures with mommy! Pete the cat book launch followed by lunch at 5 Napkins and a stroll in the park (mom had to do minimal carrying of child)

I know these photos don’t depict a child struggling with severe anxiety but she is.

Screaming and crying for hours at night, unable to be consoled in any way, it’s been heartbreaking. And exhausting.

I’ve been in touch with her specialist. We are considering changing her sleep medication. She’s only on one medication for sleep. Clonidine. And am so grateful that we’ve been able to keep the drugs to a minimum so far. Most girls with Rett syndrome are on upwards of half a dozen medications.

Clonidine obviously hasn’t been working so great lately. But I may have found something that has – continuos release melatonin. It never worked for her in the past, but the past two nights she’s been sleeping. Is it luck? Is it melatonin? I don’t know. But I hope we continue with this streak.

My superhero

Even though last night was a tough one (she may have had a seizure and it made her very upset), today Lily was excited about going to school as it’s ‘superhero’ day.

This kid is MY superhero.  Every day.  She smiles in the face of adversity.  She has fierce determination.  She is silly.  She is smart.  She never gives up.  And she rocks a jumpsuit.

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Superheroes live in the hearts of little kids fighting big battles.  #reverserett

Tellin’ time

orange watchA few weeks ago, Lily lost a tooth and got $5 from the tooth fairy.  She told me and Elaine (her speech therapist) exactly what she wanted to do with this money: buy an orange watch!  You see, she’s learning to tell time, something that she told us that she wanted to do, of her own volition.  A watch is the perfect accompaniment to this activity, no?  She’s so proud of this orange watch.

Earlier today, I got this text from Elaine and it made my heart burst with pride:

It was the most amazing thing watching [Lily] yesterday try and figure out on her own what the clock said… she kept looking at the analogue clock I brought, checking a cheat sheet I made for her and then making selections on the Tobii…  it was so exciting to see!

We are so lucky to have not only the Tobii, but also Elaine – the SLP/AT extraordinaire – to help us communicate with, and challenge this kiddo!

 

Summer, on a spring day

What a day we had today! It started at Central Park where we were meeting my grad school friends to celebrate our 15 year SAIS Bologna anniversary (for those of us who live in NYC and who couldn’t make it to Bologna).  It was a hot and muggy morning. But Lily and I had a great time catching up with old friends and

We spent four hours in the park – eating, dancing, singing, crashing other people’s parties and listening to live jazz. On the way home I took Lily for a late lunch to Playa Betty’s (her favorite restaurant on the UWS) and then we walked over to Riverside park. You see, we were on a quest to feed the birds. This is something she requested to do earlier in the week. Alas, no birds were to be found. But we will try again tomorrow.  I hear we may have another day of summer weather.

Note from school

This note came home on picture day:

Lily had a fantastic day!  She was so excited for picture day.  She looked like a model in her pictures.  She posed very well for the photographer.  She worked so hard the rest of the day.  Lots of energy today!  Miss Ariel (one of Lily’s therapists) said, ‘Lily, I want to hear your voice.’ And she yelled for us!  She also requested ‘clementine’ ‘smoothie’ and ‘juice’ during snack time.  Then she said it was ‘yummy.’  Also, one of her teachers was talking to Lily and the teacher said, ‘I’m not sure if you heard me Lily’ and Lily replied (via the tobii, with zero assistance), ‘I understand.’   This kid!

We get the photos in a few weeks.  I’ll be sure to share them.

Picture day!

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Tmorrow is picture day at school. You’ll see from the note she wrote (transcribed by her speech therapist and left on the refrigerator for me) that it’s a toss up between her silver sparkly dress and a pair of overalls. As of tonight, she’s leaning towards the overalls.

i love this silly toothless kid!