“There’s something happening here.  What it is ain’t exactly clear…”

-Buffalo Springfield

Progress is deceptive.  When you keep your eyes on the road ahead, the journey seems oh-so-long.  Long enough that you perpetually wonder if you’ll ever reach your intended destination.  It’s only when you stop going and going and stop to look back that you realize the distance you have already traveled.  And, sometimes, that realization is all you need to get a second wind.  To find what seems impossible may be in the cards for you after all. 

Callum started Pre-K ESE in the spring, right after he turned three.  Placing him in that room on the very first day was the scariest thing I’ve ever had to do.  Other parents, teachers, and therapists kept telling me that I would be amazed at what the structure of the classroom would do for him in terms of language and social development.  I don’t think I really believed them.  Not because I don’t have hope for my child.  I do.  It’s just that hope can sometimes be a dangerous thing.  It can let you down.  With a severely developmentally delayed child, you have to walk the nearly invisible line between acceptance for what might be and hope for what could be.  When you do one, you risk denying your child the other — in an endless cycle of “I need to do better”. 

But since returning to school this fall – to the same teacher’s class – we cannot deny that Callum has made progress.  On all fronts. 

A few weeks ago, we began receiving reports of words from school and daycare.  And not just randomly repeated words out of context.  But words Callum knows and made the choice to use.  “Peesa” (pizza), “mi” (milk), “pees” (please), “I sowwy” (I’m sorry), “tantu” (thank you), “goo ja” (good job), “nana” (banana), “come ah” (come on), and more.  It seemed to happen all at once. 

But it hasn’t been just words.  There’s been a kind of strange give and take in our verbal interactions with him — even when he’s just babbling.  His babbling sounds like sentences in a foreign language.  And they have a distinct tone — silly, happy, etc.  The amusing one is when he is displeased.  You can tell you’re in big trouble with that one as he furrows his eyebrows, raises his voice, and emphatically babbles his displeasure.  That one inevitably follows being told that he may not have more chocolate or jump on the couch.  Or both.  The important thing is that he is clearly responding to what we say.  He responds when asked a question and usually when told to do something.  And it’s often like a conversation.  It’s different from before – in some way I can’t exactly qualify.  But everyone sees it.

And then there are the social differences.  His teacher, whom we think the world of, reports that he is understanding and following classroom routines.  He sits in circle time, follows the yellow line when walking, and holds is backpack.  No, he isn’t mastering any academic goals yet.  But social conformity precedes learning.  It’s a foundation on which we can build.

He’s also getting into things more now and starting to get in trouble.  It gets harder each day to look dutifully stern when he gets a naughty twinkle in his eye before attempting yet again to break the rules.  He knows he’s being bad – and he is delighting in that knowledge.

And when he isn’t looking, so are we.

If I had to boil it down to one description, it would be this:  Callum — the boy — is in the room with us more and more, not just his body.  He isn’t playing quite yet, but he has shown more interest in some toys.  He is requesting things other than food (such as bringing us his shoes when he wants to go for a drive).  He is swaying to music on occasion.  And discovering that he can open things and make a mess.

Callum, in short, is emerging from behind the wall of autism. Yes, I know the wall will always be there.  I know it is a part of him.  He will always be different, and he will always slip behind that wall sometimes.  But he is learning that things on our side are kind of cool too.  He is seeking us out and realizing that we will consistently meet his needs — especially if he makes them known to us.

And with this comes a level of wonder you can’t begin to know unless you have a child whose developmental milestones aren’t guaranteed.  Each one met is precious and must be celebrated without the assumption of the next to come.  Living in the moment takes on new meaning when patience becomes a choice over a virtue.

No, nothing this little boy does is taken for granted.  Every word, every interaction, every anything he didn’t do before becomes a blessing.  And that, in itself, is a blessing I could have never anticipated just a few short years ago.

Yes, we have words.  But with that, we have so much more.  We have hope.  And a song in our hearts — whose tune we have sometimes forgotten.

Morning has broken, like the first morning
Blackbird has spoken, like the first bird
Praise for the singing, praise for the morning
Praise for the springing fresh from the Word

Eleanor Farjeon

29 responses »

  1. fotodad says:

    This is so amazing! Congratulations to you and Callum. When my son started ECE (I think it’s the equivalent of your Pre-K ESE in your state), he was a boy of few words, but his enunciation was clearer than his NT sister at the same age. Later in the school year one of his goals for his IEP was to get him to talk. We were telling his teacher that he does talk, but she didn’t believe us. Well we showed up with him in tow for a parent-teacher conference, and he walked in the classroom talking a blue streak. The teacher’s jaw hit the floor! She said “Now we have to get him to do that at school!”

    There is hope, as you’ve seen now that Callum is beginning to peek out from behind the Autism Wall. It’s working – keep going!

  2. allilivi says:

    There is no one who cannot learn, just need the right environment and the right teachers who value each individual they teach and work with them individually too. Fantastic blog

  3. Chris says:

    I have been reading your blog for a few weeks and have really enjoyed it-so thank you! I was just thinking of this today. As I was in our IFSP meeting, begging for more hours, everyone pointing out how much my son had progressed, and I yeah, yeah them and can’t get **too** excited because I all see is all the goals he hasn’t met. I need to remember baby steps, he needs to walk(literally!) before he can run!

  4. You so eloquenty echo what we were going through 16 years ago. Could the trip be that long? Yes! But the rewards are so gratifying. Now at 20 he is looking for a real job, one that he has already had 2 years of training for. The road ahead is beautiful!

  5. Robin says:

    Well said!

  6. Jo Ashline says:

    Amen sister. One syllable at a time, the miracle unfolds before our very ears and eyes. Our children remind us just how insignificant most of the things we fuss over are, and open our hearts to the kind of existence most strive for their entire lives: to live in a state of perpetual gratitude because in our world, there is no such things as taking something for granted. Thank you for sharing this most precious of milestones.

  7. Ciara MacGrath says:

    You have just brought me back to 2000 when my son only said no (it meant yes as well) and dada (broke my heart that he couldn’t say mama). I am remembering the excitement as more and more words emerged. Remembering not to interupt him when he started to babble because he would just stop talking. Bedtime was always when we could get him to talk most. Now he is 15 and I take his conversational skill for granted. He is shy but if given the chance he will talk to anyone who takes the time to talk to him. Thank you for sharing. You have made me remember the milestones.

  8. AutismMummA says:

    Wonderful news, it’s always so difficult to gauge anticipations and progress. Very happy for you all 🙂

  9. dogfordavid says:

    So happy for you both 🙂

  10. Sandi says:

    How exciting! I remember when my son first found his words and how wonderful it was. 🙂

    A note: Once my son started communicating? He started getting angry. A lot. It was as if he felt that now he had the words, he should get everything that went with them, including everything he ever wanted. Words are magic…but not all-powerful. Years later and he’s still working on that. lol

  11. cblondie says:

    It is wonderful to here how well he is doing! I really love this post, especially as it reminds me so much of one of the boys I help care for (he’s 14 with downs syndrome). He may not speak in sentences, but once you learn to listen he has quite a lot to say! He know what he wants (or doesn’t!) and is amazingly good at getting it across despite his delays. It seems like every week he manages to communicate something new, and it is something to celebrate every time!

  12. rocalisa says:

    Wonderful and marvellous.

  13. Carolyn T says:

    I have 2 little autistic grandchildren-great grandchildren actually- and I am beginning to see how exciting having autistic children because there are so many, many more times to celebrate and appreciate small wonders and little bits of progress/ it is joy after joy after joy.

  14. Kathy R. says:

    Oh… stop making me cry!! I know oh so well how you must be appreciating EVERY. SINGLE. WORD.

  15. Amy says:

    So excited! As an early childhood SLP, I celebrate each and every word! Yay for Callum!

  16. LOVE this! I remember feeling the same way as Norrin’s speech started to emerge.

  17. Yay! Hurrah! Wunderbar! This post warms the cockles of my heart.

    I remember the first time the light switch in my son’s brain was tripped and Jacob realized that those word thingie-ma-bobs that he liked to play with the sounds of and repeat endlessly could actually be USED to communicate his needs to us. I also wish I had had videotapes of him at every stage of his development, because sometimes I take communicating 10 year old Jacob for granted and forget how long the road has been and how many tiny steps got us here – still autistic but connected at the same time.

    I hope your road ahead with your sweet boy goes swiftly and with as few bumps as possible. xoxoxo

  18. Hannah Cole says:

    That’s wonderful! I have been reading your blog for the last few weeks. My daughter is 18 months and I believe she is on the spectrum. We are beginning what I am sure will be a long journey, and hearing about yours gives me much needed hope and perspective. So thank you. From the bottom of my heart.

    • FlappinessIs says:

      It gives me hope and perspective to have an audience to read it. Thanks so much for that. 🙂

      • pianomikey says:

        It’s how my wife and I found you as well ❤

        Dmitry's coming on 2 and a half and… oh the joy when (if…) he speaks his first clear words again. The last time he's truly spoken was "buh-bye", over and over again for most of the day… 6 months ago.

  19. Suzanne Keyes says:

    How wonderful! I’m so happy for you! I know just how you feel.

  20. Jenna Kurtzhals says:

    What great news Callum!! We are on about the same path as you with our son Luke! He is just exploding with words and interactions in the last few months! Every single moment is an absolute treasure!! I don’t take a single minute for granted because just as you said there were days when he didn’t mutter so much as a word and I wondered if we would ever get here. There are also days I wonder how we will ever get to where he needs to be….. BUT that can’t stop me! He WILL get there when HE is ready!! Just as all of our kids will!! Thanks for continuing to share your journey!! I am truly so very happy for Callum’s progress, keep it up buddy!! 😉

  21. Exchange callum’s name for lila, and you’d have our story for the last year and a half. Her verbal communication has just gone full speed in the last 6 months. Just recently, lila has been able to write her name! I was rushing to get out the door because I was running late for school and I spied her writing her name in the condesation on the window, WHILE saying the letters L-I-L-A. I cried all the way to school because I was so happy.

  22. Lani White says:

    I can’t even express how perfectly this captures my feelings. The understanding that my son taking a step, giving a hug, even telling a full blown lie is a wonderful, unexpected gift is sometimes hard for others to get. Thanks (as always) for sharing this- yet again, proof we aren’t alone. 🙂

  23. Mama D says:

    Wonderful news. Thank you for sharing!!

  24. Lisa says:

    That sounds so similar to the way my son started talking back when he was 3. It is so exciting and thrilling…and the progress cannot be denied. And that? That brings so much hope along with it! Enjoy this time. 🙂

  25. Teri Chason says:

    We had this experience–so basically I am doing a GIANT happy dance for you :-). Hugs!!!

    Sent from my iPhone

  26. jaime says:

    your posts always bring tears to my eyes. keep posting. so happy to hear of callums progress. jaime

What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s