Wednesday, 23 July 2014

Our Last Chance For Early Intervention

Last Chance

I received Nate’s ECI (early childhood intervention) assignment for the coming school year in the mail today.  It was nothing unexpected, he is going to the same school he went to last year and the year before, he will just be attending the afternoon session instead of the morning because he is older now.  Yet, it’s been about 30 minutes since I opened the letter and my heart is still pounding, my mouth is dry, and I am on the verge of tears.

Why am I even upset?  I love that my coworker Rhonda is my constant IM companion, because typing back and forth with her is in some ways like self-reflection.  It didn’t take long for me to realize what was up.  It feels like it’s our last chance. 

Last chance for what you might ask?  If you are a fellow autism parent, you know exactly what I am talking about, and ok, here come the tears.  The “window” is closing. 

What is “the window”?

If intervention services are implemented appropriately between the ages of 3 to 5, 20 to 50 percent of children with autism will be able to attend a mainstream kindergarten class. That window of opportunity then, is a small one, and early intervention remains the best option.

Parents ask us all the time about the “Window.” You know that window of opportunity you have to help pull your child out of the world of autism and into our world. Many are worried that the window is either closing or is already firmly shut.

So whether you believe this window is going shut or not, as a mom in the circumstance I happen to be in at this point in time, I am going to think about it.  You see, when it comes to Nathan, I am going to be honest, I did it right.  Jack had been diagnosed very recently before Nate, and I was on high alert.  I didn’t wait until he was two; I barely waited until he was 18 months.  I had him in to Infants and Toddlers so fast it would make your head spin after a brief discussion with our then pediatrician.  I wasn’t taking any chances.  I can’t even count the number of times I heard, you won’t even recognize him a year from now- from teachers, therapist, even our current and much loved pediatrician.  “You caught this so early, and that is the key”.  Really?  I believed them for so long.  Maybe even a whole year went by of me believing before I looked at John and said have you heard new words?  And his answer -was no.  Now, we did see some improvements- the self-harm stopped- that was certainly a huge relief, but did we recognize Nathan as the same delayed child as he had been the year before? Most certainly yes.  And the next year too.  When he left infants and toddlers at about 3 years old, it wasn’t triumphantly at all- it felt sad.  It felt like, well, he’s exhausted the real early intervention, time to move on to the next, less intense step (and it is, let’s not lie- infants and toddlers is one on one intense instruction and that just cannot be said for ECI).  I felt the same vibe for about the first full year he was in ECI- until about last Nov-Dec.  When Miss Gwen, our home instructor, started working with Nate in the classroom one day a week she was able to show the teacher and aides what Nate could really do.  That changed things for the better.  And as we changed interventions this spring, and Nate began private speech, things improved even more.

So to say that a lot is riding on this year is putting it incredibly mildly.  Next year he will have a totally new placement- either in a special needs school or in a special needs classroom in a mainstream school.  I won’t even begin to con myself into thinking he could go to kindergarten; I don’t need to set myself up for any more heartache.  But I can try to hope for the classroom in the mainstream school possibly right?  I can hope.  I can potty train him like a maniac, I can continue all of the interventions I am doing now, I can take him to all the therapies I am now and pray they continue to make a difference.

The fact remains, this year feels like we are trying to sneak through the window as it closes and it scares the crap out of me.   And that is why one little letter that I was already expecting turned my world upside down this afternoon.


  1. Much blessings always rooting for you and your family xo:)❤️

  2. We are in the exact same boat as you. We have one more year left before DS turns five, and while he'll have intense therapy over the next year, I highly doubt he'll be ready for a mainstream kindergarten. Keep the faith- these are critical years, but he will grow and improve dramatically beyond his fifth year. There is an extraordinary book I would like to recommend titled 'The Siege' by Clara Claiborne Park. It is considered the first autism memoir (written in 1967), and it is tremendous in showing how much a child can grow beyond this time frame. Jessy (Elly in the book) doesn't really start speaking until the age of 8, but grows into a truly tremendous woman.

  3. My son wasn't diagnosed until he was 7 when "social demands exceed his capacity to cope." I panicked about the window, too. In the 2 and a half years since, I have learned that there are many windows. Fingers crossed that the view out your window is amazing! :-)

  4. Cheer up !!!

    You are doing great. Your son is now verbal and still very young, plenty of kids with autism are non verbal at his age. Now you develop his speech, then learn reading and writing, and after that it's math. Lots of small steps equals big progress.

    You could not have started intervention much earlier. In most countries, aged 5 is when kids get diagnosis, let alone intervention.

    There are no closed windows or doors. You just have to maximize your son's development, it does not matter about other kids.

    Plenty of kids with an autism diagnosis today would not have had one 20 years ago. So it is hardly a surprise if 20% of kids today progress very fast, they only had very very mild autism. The kids with real autism will always need much more time, but they too can make great progress.

    It is not a race to the next benchmarking test, it's called life. It is not the one you planned for, but it is the one you have got. Enjoy it !!!