I came across this short article the other day which REALLY described – spot on – how and where and why we mommas of special needs kids find the strength to do what we do. It truly is a joy to ‘care’ for my L-bug, even when we are on vacation, at the hospital.
Click here to read the article (I’ve not figured out how to insert it correctly into this post): strong enough
Sitting pretty at the Mother’s Day party in Millburn, NJ, May 2014
Wow, last week we were social butterflies, entertaining guests and party-hopping. Not so easy for this introvert. Lily is the outgoing one on this team.
On Thursday morning, I brought L into the office for ‘take your kids to work day’. She charmed everyone from the CEO to the mailroom clerk. And it was very obvious that she wasn’t interested in a desk job (see below).
When we got home from work, Grandma was there! She had just arrived from Florida and was staying the weekend. When the elevator opened to our apartment, Lily ran to her and immediately gave her hugs and kisses, like no time had passed.
Thursday evening, after Mom, Leslie and I returned from the Rett Fundraiser (which was both lovely and bittersweet), Lily decided that she wanted to have a party too. So she entertained us all by doing her Lily thing – giggling, dancing and giving plenty of kisses.
On Friday, we met up with one of Lily’s therapists for a playdate at Bounce U (a huge indoor bounce-house/playground). HOLY COW. I’m not sure who had more fun, me or her. Seriously, we were both laughing and bouncing and giggling so much. L (and I) had to take a 3 hour nap when we got home!
Saturday night was party-time in Greenpoint with the Salerno’s. Earlier in the day, Lily had somehow figured out how to turn on the photobooth application on my computer and so we made sure to take plenty of pictures with our family. As you can see from the shots, someone was having a very good time.
We have yet another busy week. Yesterday was swim class (she did awesome), tomorrow we go in for the assitive eye gaze technology evaluation (more soon on that), and Friday we visit one last preschool. This is all on top of her 30 hours a week of in-home therapy. I’m not joking when I tell people that she’s busier than my CEO.
The swim lesson was a success! It’s very much occupational therapy focused and this teacher knew what she was doing. Lily was initially over-excited when she got to the pool (maybe it was the peepee potty dance/song I sang to her after her successful potty visit, or the acoustics at the indoor pool, or seeing the pool, or a myriad of other unknown reasons). She was chirping and babbling REALLY loudly. And once she got in the water, she was thrashing around (in a fun and happy way) as her senses were all over the place.
To calm her down, the therapist did some slow spinning with her in the water and then put light weights on her hands and feet. Zen-like focus ensued for the rest of the hour. She was kick-kicking (like she learned to do at Grandma’s pool) and walking on the underwater trampoline – a complete natural. The therapist was impressed that she is so strong and comfortable in the water. They did some strengthening exercises while Aileen (the therapist) sang ‘wheels on the bus’ to L. Everyone had a great time.
Who knew that St. Barts on Park and 50th had such a great indoor pool? I love the restaurant (it’s a beautiful spot for a sunny day). We will be going back. For pool. And lunch!
A complete natural in the water, and totally calm and happy afterwards too!
I guess I need to get used to them when it comes to Lily’s development and growth. But it’s disheartening when she’s unable to do something she was previously doing the week before. It will come back. It almost always does. But my heart breaks for her that she has to struggle like this.
Her word approximations weren’t so great last week and her fine motor skills have waned a bit too. But even though she’s having these slight regressions, she’s still progressing in so many other ways… For example, she’s a natural at potty training ; she did peepee potty the first time she was put on the toilet! She also gestured (with her hand) to have me move closer to her face so she could give me a kiss! This is the first time she’s gestured that ‘come here’ movement; something we all take so easily for granted. For Lily, she did it twice last week and I was dumbstruck both times.
Tonight she is starting swimming lessons. Actually it’s aquatic therapy which was highly recommended by the Rett specialist. We are both hoping it will be a fun time!
More soon.
C and L
Many of you know that I love the show ‘What Not To Wear’. I’m so sad it’s ended. I miss Stacy (aka my cousin Miriam) and Clinton and their words of wisdom…
But I stumbled across a few other souls, from a totally different realm, who have REALLY useful wisdom which has helped me feel less alone, less questioning of myself (I’m always wondering if I am being too sensitive) and more empowered.
This special needs parent thing is a whole new world for me. And likely, it’s a new world for you too (likely because of me). So I want to share with you a few links which may help you better understand, better communicate and better support me (and my L) on this journey of ours.
Happy Reading!
What you SHOULDN’T say to a Special Needs parent:
http://www.womansday.com/sex-relationships/friendship/special-needs-children
What you SHOULD say to a Special Needs parent:
7 Things you don’t know about a Special Needs parent:
http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html
blueberriesandgiggles 