Thursday, March 10, 2016

If your child needs all your attention all the time, here's hope

Last night, I needed Max to occupy himself while I was putting an overtired Ben to bed. I suggested that he do some IXL, a website that makes practicing math, science, language arts and social studies fun; he enjoys doing fractions on it. Twenty minutes later, I emerged from Ben's room and stood in Max's doorway. He didn't see me there, watching him. I stared as he tapped the answers on his iPad screen, and I felt so thankful.

This sort of thing happens from time to time: I am suddenly filled with gratitude about what Max can do, because I can vividly recall the time when he couldn't.

As a tot, Dave and I needed to constantly engage Max. He couldn't yet grasp toys, hold balls or press buttons; he wasn't yet able to engage in pretend play. He wasn't a child we could leave alone in a room to play, have him play on the floor as we prepared dinner or get him to occupy himself in his room when he woke up early in the morning. It was consuming, exhausting and draining, all hands on deck at all times. Relief arrived only with visits from my mom, sister and sitters.

When you are in the thick of caring for a young child with special needs, you somehow think life will always be that way. I am not here to give false hope; every child is on his own trajectory, special needs or not. Children progress on their own time, in their own way and not necessarily in every way—but they progress in ways you can't imagine. Oh, how I wish I could tell the mom that was me 11 years ago, sitting on the floor of our playroom and wrapping Max's chubby little fingers around balls and pressing them onto the keys of pop-up toys, to rest assured that he would develop and change and that parenthood wouldn't always be so intense.

And I have never, ever stopped marveling at how Max, and life with him, has changed.

When Max sits in his room alone and plays with a fire truck, I'm thankful. When he vegges on a couch in the living room and watches TV, alone, I appreciate it. And when is immersed in doing math on his iPad—FOCUSING! DOING MATH! VOLUNTARILY! ENJOYING IT! TAPPING BUTTONS BY HIMSELF!—I am not just looking at a boy doing work. I am looking at where this boy came from...and where he will go.


  1. Thanks for sharing. I remember sitting with my youngest son(ASD diagnosis)going,"vrooom," with a car encouraging play, engagement. Pointing to the colors"This blue, this red, cars go in a city, people in cars, let's play with people(figurines) in cars.." Now he builds cities with blocks, our kids surprise us.

  2. If you told me I would have played the flute four years ago, I would have laughed and said it was absurd. Three years ago, if you told me I would be in the high school band fourth chair, out of ten, I would have said that was impossible.

  3. Reading this post and your blog gives me hope.
    My son is 16 months and we are still in the process of getting a diagnosis...which is frustrating in itself. He cannot sit unassisted yet or grasp toys, and is fully reliant on my husband and I to entertain him and support his body. Right now, it feels like our world will be like this forever...but reading your blog every day is uplifting and helps me know that at some point, there will be a breakthrough and things will change.
    Thank you for writing and giving a new special needs mom much needed hope and support in this long journey ahead.

  4. Love this post so much! My life with Mason was very similar and just this year he is starting to become a little more independent. Not in the house as he still doesn't like to play independently. But he is doing so well with his gross motor skills he is now completely independent at playgrounds and it is just amazing to me. And also good timing as he has a 19 month old brother I need to chase around ;-)


Thanks for sharing!

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