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Let the Games Begin!

3 May

This is the third installment of the story of our journey with Maura…

Just as we were realizing there was more to Maura than just dimples, drool and happiness, we moved to a new town, which meant a new school for the boys.  Right away, the speech therapist (ST) at the school met with us, as the boys had issues with articulation.  Maura came with me to that IEP meeting, and went from my hip to my lap to holding on for dear life to the edge of the table while trying to gnaw on it (her mouthy tendencies were in full swing at that point.)

The ST mentioned they wanted to check one son for fine motor skill issues, as he had terrible handwriting.  I laughed and said “It’s my  month for motor skill issues.”  The ST asked why, and I pointed to Maura and said we just found out she may have delays.  She asked if I’d signed Maura up for Early Intervention yet, and I explained I hadn’t because of the move, but was looking into it (and found it all confusing, as you had to go through the county department to find the local person, and I was doing this all on my own.)

The ST jumped into action.  “You need to call her.” she said, as she wrote down the name and number of the local Early Intervention (E.I.) director.  The stage was set, it was time to call “Action!” on the new phase of our life, with all the therapists and questions.

So I called the EI director, who was at my house in record time to do Maura’s first Big Deal Evaluation.

It was kind of humorous.  Maura failed a whole section because I never even tried to teach her patty cake.  My oldest two hated it, so I never bothered after that.  Who knew patty cake was such an important life skill?  She also failed the “Put the small object into the small container” test, though I thought it was unfair.  She did do it…kind of…she put the Cheerio in her mouth.

But it was a lot of “Can she do this?” and me saying “No.”

“What about this?”

“No.”

“Or this?”

*sigh* “Nooo.”

The good news was, she qualified for services.  The bad news was that she seemed even further behind than I thought.  And I hadn’t even filled out the speech therapy questionnaire.  Where with gross and fine motor skills, she scored about 9-12 months at 16 months, with speech, she scored at about 6 months of age at 16 months.

It was depressing.  Figuratively and literally.  Depressing.

I had had post-partum depression to a degree with all my children, with Maura the strongest.  Manageable, but there none the less.  It had been easing up by her first birthday.  But then, as it eased up, I was hit with the news of Maura’s delays and without realizing it, my waning post-partum depression went straight into “there’s something wrong with my baby” depression.  But it would take another year for me to really figure that out and do something about it.

In the meantime, I started to do research online, took Maura to her therapies every Monday, and bought her every obnoxious but hopefully motivating toy possible.  I refer to that now as the “magic toy period” – because I had this theory that if I just found the right toy that motivated her and built up skills, then she’d suddenly have a spurt in development and start to catch up.

Yeah, that didn’t happen.

What did happen was that every Monday, I got up, got kids off to school and took Maura for one half hour of physical therapy and one half hour of occupational therapy.  Again, Hindsight points out that Maura probably needed much more therapy.  But that was the most they could provide with the data they had on her, and the OT and PT assured me we were doing all the Right Things at home.

I also learned that Maura’s fine motor skills were lousy, and she had no sense of self-preservation.  As in, we had to teach her to put her hands out when falling forward.

We also learned that Maura had inherited the wicked stubborn streak that was in the family.  She wasn’t going to do anything until she was good and ready to do it.  That included walking.

Months we spent, trying to convince her she could walk.  We offered push toys, but the moment they started rolling she’d drop to the ground.  She could climb onto the couch, onto the back of the couch and into the window to get at the cat, but refused to walk.  She started climbing stairs – a skill that’s supposed to come way after walking – but would not walk.  The PT assured me that Maura should be walking by Christmas.  Maura proved her wrong.

In the meantime, I joined a playgroup that was run by First Steps, where all the other local moms went to.  I was still really new in town, really didn’t know anyone, and they said this would be good to help Maura develop.  I’ll admit, I was hesitant, because the idea of watching all the other toddlers do things Maura couldn’t do was disheartening.  But I was all on the “Whatever will help Maura” bandwagon, so off I went.  Where I met a great group of women who didn’t care if Maura was delayed or not.

I soon figured out when it came to Maura’s issues, I was very open about it.  When a new friend asked bluntly “So, what IS wrong with her?” as we sat at a play area, other moms gasped, but I just laughed it off.  It was an honest question, asked with the intent of wanting to understand more.  And so I said just as bluntly “I don’t know.”   What I really didn’t know was how long I’d be answering the first question with that statement.  Which was probably a good thing.

Life continued along this path.  Therapies on Monday (where we added speech therapy to the mix after Christmas), playgroups twice a week, researching online, figuring out who to see next in the medical world, and trying to convince Maura she could walk on her own.

Age 20 months came and went, and Maura still wouldn’t walk.  Twenty-one months.  Twenty-two months.  If you set her far enough back from you, she’d take three or for steps then lunge for you.  You were forced to catch her because when she fell, she fell flat on her face.  She couldn’t catch herself.  Maura had every faith that when she lunged, you would catch her.  She refused to try any sort of wheeled aide in walking, she didn’t trust them.

We were at a stand-still.

One day, right as Maura turned 23 months old, we went to playgroup, which was held in a former school building.  We took all the kids into the big gym so they could run around, ride trikes and scooters, climb up the slide.  I sat there, holding Maura on my lap, and saw all these kids younger and older than her running…just running…and I felt so sad that my girl couldn’t do that.  I just had this overwhelming urge to cry.

But I’m not really a crier, especially in front of people.  I’m more the “bottle them all up until one day, you explode” type of gal.  I’m also a “crying gets you no where” chick, so I shook off the blue mood and went “Okay, let’s work on this.”

I had realized that Maura and I were sitting on a stack of mats – soft, cushy mats.  It occurred to me that I could stand Maura much farther away from me and if she tried to lunge, she’d fall on a nice soft cushy mat.

So I stood her on the mat and scooted backwards, out of arm’s reach, and held my breath.

I expected her to take three steps and fall over.

She took three tiny steps…then a fourth…fifth…sixth…

I couldn’t believe it.  On that cushy unstable surface of a mat, my baby girl was actually walking.  I scooted back a bit more as she got close to me.  She took more steps.  I wanted to shout to everyone to look and see what she was FINALLY doing…but I knew that would spook her.  So I just screamed in happiness in my head until Maura made her way to me, then gave her a big hug.

Five minutes before, I was a moment from crying.  And then just like that, it became the best day ever.

By the time we got to see the physical therapist again a few days later, Maura was taking lots of steps.  It was as if she was not going to walk until she was certain she wouldn’t fall over.  And go figure, once she could walk, she loved all the push toys she rejected as walking aides before.

Maura finally walking also gave me a sense of relief.  We weren’t sure what road we were headed down with her, but at least she could walk down it with us.

4/16/05 - the day Maura officially started walking

4/16/05 – the day Maura officially started walking

 

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2 Responses to “Let the Games Begin!”

  1. mrskelly5 May 4, 2013 at 5:15 am #

    Phoebe,
    As I sat here reading your post, all I could think was that your story about Maura is almost identical to my Meghan’s story. Our girl finally walked 2 days before her 2nd birthday. I never saw a kid work so hard just to take a few steps! It was a happy day indeed!

    Thank you so much for sharing your stories about Maura. When I read your posts, it helps me to know that I am not alone on this journey of raising a child with special needs.

    Looking forward to reading more!

  2. My Dance in the Rain May 23, 2013 at 9:19 am #

    Sophie took her first steps at 2.5 than fell and busted her tooth (she was not reacting to falls then and did not instinctively use her hands for safety). She lost that tooth and became afraid to get back up again. When her baby brother turned one and began to walk she decided she would too. She walked 3 weeks after him, a week after her 3rd birthday. Now she runs 🙂

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