Lame Self Care for Special Needs Moms (and One That’s Not Lame)

Monday morning Eliana slept in like she has been recently. I forgot about labs like I have been recently. (In my defense, her numbers have been so good we only have to go once a month, so we have more leeway than we used to to schedule lab visits.)
I was so consumed with everything else on my plate, I overlooked that it would have been the best day to go this week. You know, had we all been up and ready. But instead she went to Dad’s office while I went to an appointment with the surgeon to talk about having my gall bladder removed. And then from there back to pick her up for preschool.
Removal of a vestigial organ: one of the lamest ways to practice self-care, to use of one today’s buzzwords. That and making an appointment to get prescription sunglasses, a goal of mine for the spring since mine are super glued together.
Today we went to Hershey to the orthotist to pick up her new leg brace and drop off new sneakers to have a lift put on. 
Tomorrow morning, off to labs and then Friday my actual self care: a weekend in NY with my big sister, thanks to David’s Refuge, an organization that funds weekend getaways for special needs parents. I was floored last year, the first time I went on a trip like this: two nights in a bed and breakfast and two dinners out, completely funded by David’s Refuge. I told someone recently that while the trip is the bomb, what really got me was the hosts, volunteers from David’s Refuge and people who I’d never met before, who took the time to sit down with me and tell me what a great job I’m doing. In all honesty they could save a lot of money by just calling me on the phone and telling me that once a year. I mean, I’ll drive up to NY this weekend anyway…

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April 11, 2018 at 3:17 PM 3 comments

Well said

Lest you think we’re wallowing in speech therapy angst, here are two times recently when Eliana got her thoughts across just fine. That same day she and I were hanging out at the hotel room she waltzed over and cranked the knob on the dishwasher, turning it on. I ran up behind her turned it off, and said, “No, that’s what turns it on,” and she said, “Yeah, and also off.”

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Proof we didn’t spend the whole time in the hotel.

When the begging gets rough Hank likes to pull out “And I want a pony,” a phrase he perfected when Shira was smaller and whinier, always asking for ice cream or a trip to the playground or the movies or another Polly Pockets doodad. Shira always just rolled her eyes or times when she was particularly irked you could see the little angry cloud above her head, but Eliana responded with “But I don’t want a pony.” As in, quit trying to change the subject.

Yeah, sometimes she gets her point across well enough.

June 20, 2017 at 12:51 PM 2 comments

It’s all connected


We’re on a roll! We had a second family vacation last week—Pittsburgh—and it seems  all we came home with is a raging flareup of eczema, lucky Eliana.

 

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The Pittsburgh Zoo and Aquarium

Now that we’re back home, I’m thinking about how her care is all connected. Take speech therapy: She’s almost caught up, according to her therapist. And yet… I’ve noticed lately that she sometimes has trouble explaining to us what she wants, she’ll say things like “Come here” and “Look at that” when she’s got a lot more going on in her head, and I’ve also noticed how much we talk about food and eating, which is another of her delays, so it stands to reason it would be difficult for her to find the right words. She’s still figuring out how to eat, much less talk about it in complete sentences.

 

An example: On vacation she and I spent one day lazing around the hotel room while Shira and Hank went to a meeting (You’ll have to ask the two of them about that.) Eliana was dragging me into the other room of the suite and saying “Come here,” and finally did the sign for eating and said “eat” so that I could understand what she wanted. So is it that she’s having trouble formulating the words or simply recognizing that she’s hungry and eating is what would make her feel better? It’s all connected.

Today at lunch she laughed and said, “You’re eating with your neck!” prompting me to explain I was swallowing my sandwich and she could see me swallowing it. The things normal eaters miss out on.

June 19, 2017 at 3:34 PM 1 comment

Hide-and-seek and catching up

It’s 2017 and we have a lot to catch up on since the previous blog post in September of last year. Our first real family vacation since Eliana was born.

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Eliana and Shira with Sleeping Beauty at Disney World.

Progress on the physical therapy and oral feeding fronts. A bit of swimming to keep active during these dreary winter months.

A little work time carved out for me, both editing and writing. (See the Forward Sisterhood for the latest.) I won’t even mention the colds and ear infections because who wants to hear about that?

I’d rather tell you about Eliana learning how to play Hide-and-Seek—we’ve been trying to teach her every now and then the past few months, and she’s now starting to get the hang of it. The counting part she’s got down. The closing her eyes and not peaking, not so much, and the hiding part, not so much. She can’t help hopping out of her hiding place immediately to find you. Patience isn’t top of any three-year-old’s skill set, though.

We’re also working on the lingo. Instead of “Ready or not, here I come!” Eliana shouts, “Ready or not, come here!”

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Eliana stepping into the zero-entry pool.

January 17, 2017 at 3:52 PM 2 comments

Speech Therapy on the Road

September 29, 2016 at 3:49 PM 2 comments

Ch-ch-ch-changes

It’s been almost exactly two months since our last post. Sorry. But it’s been a whirlwind summer, with things changing left and right. Here’s a rundown of  the highlights over the past few months, with Eliana’s comments, and a nice “what I did on my summer vacation” collage at the end:

(1) We took trips!

We braved two day trips to amusement parks. Sesame Place early in the summer, then Knoebel’s in August. Two looooooong days, but fun. Eliana is now particularly fond of carousels, and in case you’re wondering, most of the rides are easily described as “up down” or “round and round.” But really…do you need to know much more about the kiddie rides?  There was also a trip to the annual Fisher Family Frolic in Vineland. The world will never forget that ‘cow lick Ana’s arm!’ and ‘Ana pat bunny!’

(2) Swimming is totally a thing now

Shira’s been a waterbug for years, and there was no slowing her down this year. Eliana went from a reluctant floater in June to an “I did it! Kick!” independent kicker in August. I smell a wintertime rehab possibility…

(3) The NICU reunion

Every 3 years, the Hershey Medical Center NICU hosts a “reunion” for families. We first attended in 2013 while Eliana was still in the hospital (we called it a “pre-union” at the time), so this was the first time Eliana could attend. The weather was kind of miserable – 90+ degrees and humid in September – but it was still awesome to be there. Weirdest thing was looking around at all the families with really young kids and remembering what it must be like to be fresh off the experience.

Plus…they had pony rides! “Ana ride horse!”

(4) School daze

Of course there’s the elephant in the (class)room – school has started. Shira is a (gasp!) middle school student this year. Among other big changes, it means her bus stop is 85 minutes earlier (hello 6:55 am!), and two blocks further. ugh. Daddy no like.

And Eliana is in school too. Now that she’s three years old she has transitioned into the Intermediate Unit for her services, and she is attending preschool in a three-day-a-week IU classroom in Hershey. That’s about 30 minutes away – not far from the medical center, ironically enough – so HER ‘bus’ (ok…its a van, but that’s not what she calls it) picks her up at about 7:30 to whisk her off to school. They’re apparently working on the days of the week, so “Ana go school Monday” is the refrain, every day of the week.

(click on the photos for a slideshow)

 

 

 

September 18, 2016 at 9:23 AM Leave a comment

All you really needed to know about Eliana’s third birthday and didn’t have a chance to ask

Date:  Saturday, July 16; 2016

Time: 7:30 am

Setting: Lerner household; Master bedroom; Daddy’s side of bed


Eliana <cheerfully and with excitement>: “Daddy! Out of bed Daddy!”

Daddy: <who had heard her coming and had a chance to clear his throat in order to sing>:

“Happy Birthday to youuuu!

Happy Birthday to youuuu!

Happy Birthday Eliaaaaaaannnnnnaaaa!

Happy Birthday to youuuu!”

Eliana <smiling broadly and holding up several fingers>: “Fhee!” (See here for alternate pronounciation)

<short pause>

“Cake!”

 

Eliana's third birthday. Later in the day, with ice cream cake.

Eliana’s third birthday. Later in the day, with ice cream cake.

July 17, 2016 at 2:04 PM 1 comment

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