Sunday, January 8, 2012

The Ostrich Egg

If your a fan of cooking shows like Top Chef or Iron Chef then you've probably seen an Ostrich egg make an appearance from time to time. This egg is the Grandaddy of all eggs. It is HUGE! The average Ostrich egg is almost 6 inches long, 5 inches wide, and weighs in around 3 pounds! The chefs on these shows usually attack this culinary delight with gusto and a hacksaw. No cracking this baby on the top of your counter.  In order to get to that golden goodness locked inside they have to saw their way through the protective shell. So, at this point you're probably asking what this has to do with being a parent of a child with Special Needs...

I need this to develop a a secure, hard, difficult to crack shell around myself. Not to keep people away, but to keep some of the things they say from penetrating my defenses and puncturing the core of my emotions. When everything first started developing (or not depending on how you look at it) with Rae's condition I was so vulnerable to everyone's seemingly harmless words and phrases. I didn't want to be around some people because inside I knew they'd open their mouth and eat their own foot with gusto. Not even realizing that they did it...you'd think they'd their own taste toe jam, but apparently it has no flavor.

Initially things like, "What's wrong with her?" would illicit an emotional eruption inside that would rival Mt. St. Helens and I was almost ready to burn the friendship bridge. Fortunately, over the last few months I've gotten better at controlling those initial responses, but every once in awhile someone still manages to find the chink in my armor. Phrases like: "She'll grow out of it," stated very matter of factly like they are some medical expert when it comes to Hypotonia sends shock waves throughout my body. I manage to choke back any retort that comes to mind, which is usually a very snide sounding, "No, she won't because it doesn't work that way and thank you for reminding me of that little fact." My other personal favorite: "You're lucky she stays where you put her. I have a hard time keeping up with Baby Doe." That one still gets past my guard because what I dream about more than anything in the world is having to chase our daughter around the house. I long for the days that I can't "keep up with her." They can't arrive fast enough.From time to time we also hear the excited exclamations, "Oh, she's getting so big. I bet she'll be walking soon and you'll be chasing her down!" To which my mind screams, "No she won't. We're hoping that maybe she'll walk by two." That one always manages to hit my heart and leaves a burning sensation that lingers for a few minutes.

By working on my Ostrich shell, so much better than chinky armor, I've been able to start nodding in silence with a slight smile and letting them speak their piece. Most people that are aware of Rae's condition don't fully understand it and aren't really sure what to say. So, they generally say whatever makes them feel better not realizing that it sometimes hurts me. Others who are aware seem hesitant to ask questions, probably out of a fear that they'll upset me, so they say generic things that by default sting a little as well. In an effort to not make the situation any more uncomfortable for either party, I have diligently constructed my shell (still working out some of the kinks) and smile without any real comment. Is it honest? No, not really. Is it fair? Nope, life never is. Is it a livable compromise? Yes, but it requires work.

You have to be willing to understand and accept that they don't mean to hurt you and are truly wishing the best. They say what makes them feel comfortable and what they hope makes you feel supported. It is awkward for everyone and a snide or negative retort on my part will only make that worse.

I'm going to leave this with a bit of advice for those out there who have friends or family with Special Needs children.

  1. Don't be afraid to ask questions. Sometimes having a better understanding of the need will make your relationship stronger and enable you to support those people more effectively.
  2. Listen. For the love of everything you hold dear...LISTEN! If you ask a question be willing to hear the offered answer. On occasion, when trying to explain Rae's Hypotonia, "She'll grow out of it," comes flying out of someone's mouth and I know that it is a futile effort to say anymore at that point.
So, here's to the Ostrich Egg and the new sense of security I feel in having it's protective shell encasing my vulnerability.

Saturday, January 7, 2012

Sun Beams: Little Victories

I've noticed that many of my postings tend to feel a little heavy and focus on the burdens and stresses that weigh on my weary mind. I don't want that to become the primary voice of this blog and would like to take the time to celebrate our Little Victories.

  1. On December 19th, while waiting for a transaction to be completed at Verizon, we noticed that Rae held and drank an entire 8 ounce bottle...by HERSELF! That is quite the accomplishment considering we have been working with her for over three months just to get her to drink from a bottle much less hold it on her own. We were thrilled! I even took a picture so I could remember the moment. Yup, I'm one of those Mom's. *Say cheese!*
  2. In the last two weeks we have noticed an increase in her rolling over . Of course she isn't always thrilled when she rolls over, but she'll figure out she can roll back over eventually. I never knew rolling over was such an important building block of child development (until Rae didn't do it) and we hope it will soon lead to army crawling...maybe...I'm keeping my fingers crossed.
  3. Rae is back to sitting unsupported for longer than a minute! We actually reached just over a minute and a half during her therapy session this week!!  We were up to almost three minutes before Thanksgiving then she grew. Every time she has some growth spurt or feels under the weather she regresses a little. It's like playing chutes and ladders and we keep landing on the dang chute...Whee!
  4. She now has 16 teeth and is not afraid to use them! While I know this isn't a gross motor-skill milestone I am glad she has a mouth full of choppers. From the time she was 6 months till she was about 10 months it was the only thing I could really point to as a big "yippie" in our home. Other parents cooed over crawling, cruising, and walking...we had teeth. Beautiful, straight, white teeth.
  5. When being held, Rae has started holding onto the shirt of whoever is toting her around. Doesn't sound like much until you've carried 20 pounds of rag doll around for more than five minutes. She's becoming quite heavy and that tiny bit of assistance is more than welcomed.
  6. Her find motor skills are progressing nicely as we now have battles over picking the puzzle pieces out of her foam floor mat. I'll come into the living room and the frog no longer has eyes or the helicopter is missing its rotor blades. I swear I'm going to flip it upside down and duct tape it together.
  7. She is using her arms and hands as a form of expression/communication more often. Waving them around when she's happy, tapping them on her high chair tray when she wants "more," and every once in awhile she will sorta wave. The best one so far happened while I was singing "Little Bunny Foo-Foo" and she started bouncing her arm up and down along with mine. It was a wonderful moment for me and it hasn't happened since, but that one time was just what I needed.
  8. Rae has some sensory issues, for lack of better wording, and for whatever reason soft, furry toys that talk really upset her. For her birthday she received a shake and giggle Elmo from her Aunt & Uncle and (much to my relief) she LOVE's it! Prior to this bright red, giggling, muppet she would pull her arms back, scrunch up her face, whimper, tears gathering in the corner of her blue eyes, and shake in fear of anything furry that made noise. Her fear of talking stuffed animals has been overridden by her love of Elmo. Ahhhh...the power of Elmo! (la-la-lala...)

video

Some of these Little Victories are spread out over a month or more and that is just part of living in a Hypotonic World. Everything is done at Rae's pace and only she seems to know what speed that pace is set and when we may arrive to our next milestone. We are all just along for the ride, supporting her development, celebrating our Little Victories, and doing the best we can to not let the frustrations overshadow the joys of this journey.

Thursday, January 5, 2012

A Cat-astrophe!

Some relationships that develop while learning how to navigate in the world special needs will become significantly more personal than others. You may not feel as close to your child's Ophthalmologist as you do their Neurologist. I think it would depend on how often you see that particular specialist. In my case, I have become very attached to Rae's physical therapist. We met Anna through Early Steps and while I was nervous about having a new person come into our home every week that apprehension quickly faded away. Now I look forward to hearing the buzz of our doorbell every Wednesday morning. Unfortunately, our patient/therapist relationship isn't without some kinks.

Tummy time with Anna.
During our initial meetings with Early Steps, I made mention that we were the owners of three, strictly indoor, cats. That means we have cat dander and hair pretty much all over the place. I wanted them to make note of this so we could be matched with a PT that didn't have allergies, especially to cats. In an effort to stress this feline fact, I mentioned at least three separate occasions. Satisfied that I did my part to avoid developing an attachment to someone that couldn't stay I put the potential catastrophe to bed and moved on. Imagine to my surprise, after waiting for two or three weeks for Early Steps to find a PT, when I first spoke with Anna and once again asserted that we are a feline friendly home she admitted to being...you guessed it...allergic to cats!! Like you didn't see that set-up coming a mile away.

Tigger
Houdini and Moo-Shu
Aaaarrrrrggggghhhhhh!!!!!

Well, she was still willing to give it a try and I was determined to do everything I could to make her comfortable outside of getting rid of our cats or pumping her full of Benadryl the minute she set foot through our door. So, every morning before Anna arrives I vacuum our entire living room (including the furniture), chase down the hair balls which seem to multiple over night, and corral the cats into our bedroom. This effort has been richly rewarded by no incident of an allergy flare-up. That us until recently...of course.

Anna and Rae working on head control.
During the holiday season, when everything is hustle and bustle, I was not as dedicated to making sure the above noted measures were completed prior to Anna's arrival. The first week she made no mention of it and everything appeared to be going as usual. The second week the sneezing began and I ended up hunting for tissues. I vowed that the next week would NOT be the same and I would do everything that I usually do to make sure she was comfortable. I was overwhelmed with contrition and apologized profusely for my lapse in housekeeping.

Well, that weekend I received a call from Anna...I was dreading that call because in my gut I knew it wasn't good. She said that for two or three days after her visits she experienced discomfort caused by our cats. I felt horrible and then afraid of losing her. She offered to try another week or we could contact Early Steps and inform them we needed a new PT. Panic was beginning to wash over me. What if they couldn't find someone for another two or three weeks? Who was going to work with Rae? What if the new person doesn't like us or we don't like them? What if they heap loads of guilt on top of the already gigantic pile of guilt I already feel over my perceived lack of follow through? I can't loose Anna!

Rae and Anna playing in her sensory box.
Ultimately, it is not my choice. It is her and that is what I told her. I don't wish her to continue coming here and being uncomfortable for days after. I reassured her, yet again, that I was willing to give it another try if she was comfortable and also willing.

Our next visit went better and even though I am recommitted to making this relationship work I feel like we were just handed our two weeks notice. I don't think I will be completely confident that Anna isn't leaving until another month has elapsed. Here's to my New Years Resolution: keep things clean and contained for Rae's sake. I really don't wish to start over with a new PT.