Progress in developmentally disabled children is a funny thing.  A lot like getting fat really — a subject I have enough experience with in which to opine.  You don’t see weight gain in terms of ounces.  Instead, it steadily creeps up on you.  You aren’t sure whether the pants you just put on are really tighter or if they just shrank in the dryer.  It could be that you are retaining water, after all.  But the ounces keep building up until one day you can actually see it.  Loved ones, seeing you every day, may or may  not notice.  But the nurse at the doctor’s office dutifully records it on her little chart.  And that obnoxious co-worker you make it a habit to avoid keeps suggesting you join everyone for Zumba. (Which, in terms of tolerable behavior, is the outside of enough really.)

Developmental changes are just like that.  You keep looking for miracles.  Sudden “A ha!” moments of clarity or skill.   You pray for your Helen Keller at the water pump kind of moment, but it’s not what you get.  The reality is more like this:

Parent 1: “Did he just _______?”

Parent 2:  “I don’t know.  It sounded like it, but it could have been _________.”

Parent 1: “Only this time he did _______.”

Parent 2:  “Yeah, I noticed that too.  Let’s see if he’ll do/say it again.”

Parent 1:  “He’s not paying attention anymore.”

Both:   Shrug shoulders…

Life with Callum has been like this lately.  We see little bits of progress, then question them, before ultimately deciding that – yeah- things are happening in terms of his receptive language, efforts to communicate consistently, social interaction, joint attention, motor skills, etc.  It’s subtle, but it’s there.  And, in the reverse of weight gain, we are actually thrilled to pieces at the number of people who are beginning to notice the changes as well.  

A few weeks ago, Callum began taking us by the hand when he needed a diaper change.  If we notice the need first, all we have to say is, “Come on, Callum, let’s go change your pants.”  And he reaches out with his little hand and walks with us to the changing table.  What impressed me even more happened a little after that.  He had a little medical problem  (for the sake of brevity, I won’t elaborate) requiring frequent changes and some topical ointment.  Each time, it was uncomfortable.  In the past, he would fight, not understanding mama was trying to make it better.  But, suddenly, he began communicating to me the need for a change – even though it hurt enough to make him fuss and cry a bit.  Whether this is receptive language or cause and effect or whatever one wants to call it, I know it is progress.

He has also begun to seek out more eye contact – for interaction rather than food.  He also appears, with his very few words, to be having a bit of an argument with us when he can’t have something.  Not screaming, but attempting to communicate.  He has started interacting with his sister a bit more, giggling with her on occasion and tolerating her pulling him after her to play a role in something she wants.  He doesn’t understand her play at all, but he is handling her efforts admirably.  He seems to be understanding the concept of waiting a bit for something he wants.  And, in the most heart-warming development of all, has begun cuddling with his big sister.  She, 5, keeps forcing her affections on him and wanting to hold him while watching TV.  And he –lets her and even seems to enjoy it!

Yes, progress is microscopic — until suddenly there is enough to see and celebrate.  And it’s great when it happens.

But joy?  Now that’s a choice.  You can either choose to see how far you have to go or you can choose to see how far you’ve come.  This is a journey in which you shouldn’t always keep your eyes on the road ahead.  Otherwise, you’ll miss out on enjoying the charming little companion beside you.

15 responses »

  1. Almudena says:

    I relate so much to this. Thanks for writing it.

  2. Wonderfully put. My husband and I have that conversation from time to time, too. I find myself looking forward to more of them. 🙂

  3. Cyn says:

    One of the parenting courses I took…the facilator told one parent that its not a bad thing to lower your expectations. Of course all of us parents got upset and didn’t like the sound of that. Then he elaborated and said that when behaviorists teach a life skill they break the skill down to a bunch of little mangeable steps that can be learned. He wanted us to celebrate the little steps because those little steps are so hard to learn and then string them together instead of just concentrating on the big goal…ie he put on his pants for the first time. I really had to change my way of thinking….slow down….and enjoy.

    BTW love the part at the end about choosing to look ahead or see how far you have come…words to live by.

  4. wineauxmom says:

    I lovelovelove posts like this!! This makes my heart so very happy!!!

  5. anthonysmommy says:

    Were you in our kitchen last night? LOL…The conversation was verbatim. Progress is celebrated on a daily basis. The day my son learned how to throw a ball at the age of four, we through a party.

  6. Inch by inch, progress happens and is all that matters for those who know what matters.

  7. tstarmom says:

    Loved this and the timing for it was perfect! My hubby and I are always having conversations like the one at the beginning of your post. But, the moment passes and many times the speech or burst of brilliance is gone just as quick as it came on. It’s frustrating and requires a remarkable amount of patience. Just this week, I was questioning if my son is progressing fast enough & if I am taking the right path in our journey. Your last two paragraphs and the correlation between gaining weight really spoke to me. Thank you for your perspective!

  8. Our friend Leah Kelley wrote a similar post about the uneven rates of development that autistic kids have. I guess that is why they call it a developmental disorder. But even though there are common developmental milestones that most kids follow, there really is no right or wrong way to develop and all kids should develop at their own pace, in my opinion. Leah’s post is at

  9. Jim Reeve says:

    I love your post and I also love these moments. Sometimes it’s the little things that are the most important. And it’s a great sign of development, just like you said. If only I was able to get the camera quick enough when something little happens.

  10. Patti Van Burkleo says:


  11. usethebrainsgodgiveyou says:


  12. G. Leigh says:

    I see these moments as smelling the flowers along the road of progress.

  13. Jennifer says:

    This definitely struck a chord with me too! My 30 month old is always saying things and my husband and I look at each other like, did we hear that because he actually said it or b/c we wanted to hear it? Takes a long time to actually see and believe any progress with him, but it is slowly happening! Thanks for a great post!

  14. Yes, I can certainly relate to this. The changes are small and almost slip by unnoticed until you look back with enough distance. If I compare his behavior to last month, I don’t see much progress. But when I think back to where my son was last summer, I understand and appreciate his progress. That’s why I want to cheer along with you for Callum. Hip, hip, hooray!

  15. kermommy says:

    Yup, you nailed it again. I love the metaphor, by the way, it is truly awesome. Our kids move forward and backwards in the various areas of skill that we create, but when we get to the point of really seeing progress, even small progress that is real, noticeable even for the jaded family members, it feels pretty sweet.

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