This week did not begin well. Just when I'm feeling exhausted by all I have to do for Pudding, and feeling guilty for all I can't do for her, we receive the news that Cubby is also developmentally delayed. That same day Cubby cut his finger pretty badly and I had to spend the afternoon at the ER. When the doctor told me to keep Pudding occupied while they stitched him up, I felt overwhelmed by this feeling of resentment that I couldn't be with my child when he needed me, because there is no way the other would let me. I realized that this was the first of many times I will experience this tug-of-need between the two. I was a long way from being a Hopeful Parent at the start of this week, I even contemplated asking somebody else to fill my spot.
Fortunately the week got better. Once again we were reminded that we aren't alone in this, not even close. And we learned once again that distance is no barrier for love and support.
Over the last year since Pudding's diagnosis, she has made wonderful progress in certain areas, but she continues to have difficulties with self-regulation, motor-planning, and her fine and gross motor skills remain pretty much the same as when we began occupational therapy. Any efforts we make to work on these skills are greeted with almost instant meltdown, then shut down.
I was upstairs getting Cubby dressed when I heard the music from the computer downstairs. She can use the mouse to click into iTunes, but needs help in picking her favorite songs. She only cares to hear her favorite songs, and demands that any other be skipped. The music carried upstairs:
You put your right hand in, you put your right hand out...
Oh no, "The Hokey Pokey". I've tried countless times to persuade her to join me dancing to it, and "Heads, Shoulders, Knees & Toes" and anything else that requires coordinated movement. Occasionally she will sing along with no attempts at dancing, but generally she is altogether dismissive. I quickly finish the buttons on Cubby's shirt to go and help her change the song to one she likes. The school bus will be here in 10 minutes, and I need her to be in a cooperative mood. I start down the stairs:
You put your left leg in, you put your left leg out...
I freeze. Her leg is outstretched, and pulled back in. She almost falls over with the effort of coordinating her unwilling body, but she brings her own grace to the song. I stay on the stairs, I daren't make a sound. I watch her turn herself around.
You put your right leg in, you put your right leg out....
I'm spellbound. When did she learn her left from her right?!? Was she watching me all the time I used to show her? Was she always paying attention, memorizing the sequence so she could get it right? All to soon it is over. One last hokey-pokey, she turns herself around, and her eyes meet mine. I don't know what to do. Do I applaud? Join in? Say "well done"? I make some obscure gestures that are a mix of all of those, but it is too late. The reluctant performer has ended the show, and calls for another song.
It has been a really hard week. It is going to be hard for a while. But if my girl can keep on trying, so can I. Maybe one day we'll both be satisfied with our efforts. I play "If You're Happy and You Know It" and watch as Pudding and Cubby clap and stomp their feet to the song. I sing along with my two reasons to be hopeful.
Spectrummy Mummy is striving to be hopeful most days at her blog: http://spectrummymummy.wordpress.com
You can also find me on Facebook and Twitter (but that makes me despair!).