Tuesday, May 17, 2011

I Will Remember You

For some people, the bad memories come back the moment they return to the doctor's office where their child was first diagnosed.

For others, the memories surface when they visit a place where they realized their child was different.

For me, the memories hit when I'm filling out paperwork.

I didn't realize this until a few weeks ago, when I sat down to fill out my two year old's entrance forms for preschool.  I got through the beginning questions - name, address, contact information - just fine.

But as soon as I turned the page to the "developmental progress" portion, I was stopped cold.

Instantly I was transported back two years ago.  Back to when I filled out the same form for my middle son Howie.  We had no autism diagnosis then, but we had spent time with Early Intervention and an occupational therapist for his sensory processing disorder.  We were coming off a bad private preschool experience. 

"Does he play well with other kids?" No.  "When did he start walking?" 17 months.  "When did he first start using a cup, knife, spoon?" Um...N/A.  "What are his favorite activities?"  Playing with cars.  "When was your child toilet trained?" N/A.  Again.

The trip down memory lane doesn't stop there. 

I'm quickly thrown back in time again.  To six months before that.  Filing out the forms for Early Intervention.

Holds hands over ears to protect ears from sound? – Frequently.  Is distracted or has trouble functioning if there is a lot of noise around? – Frequently. Twirls/spins self frequently throughout day? – Frequently. Avoids getting messy? – Frequently.

Fast forward again now and I'm hurdling through time and space to September 2009.  Sitting at the kitchen table, answering questions for the developmental pediatrician.

"Did you child seem to lose language?"Yes.  "Does your child seem to focus on one thing more than other kids his/her age?" Yes. "Does your child seem to lack awareness of dangerous situations?" Yes.  "Does your child have difficulties with change in routine/transitions?" All the time.

And now to present time.  To this morning.  Sitting on the floor with the speech/language pathologist as she reviews the Early Intervention procedures.  Except this time, we're signing up my youngest - my two year old - for services.  She tells me his scores are very borderline - delayed but not delayed enough.  But she wants to pick him up for weekly services anyway to catch him up before preschool starts in the fall. 

I have heard these exact words before.  On the same floor.  Remove one kid's name and insert another.  Remove speech therapy and insert occupational therapy.  And here we go again.

"Do you want me to come to the home or daycare for services?" Home. He's not in daycare.  "Will you want to participate in the two year old EI drop off group?" Yes.  But I have to work it around my other kids' schedules this summer.  "Can you sign this white form here?  The yellow copy is yours to keep for your files." Thank you. 

And with that, I have another file started for another kid.  Another thick folder of paperwork. 

And a whole lot of memories to process for the rest of the day.

"I'm so tired but I can't sleep
Standin' on the edge of something much too deep
It's funny how we feel so much but we cannot say a word
Though we are screaming inside oh we can't be heard

I will remember you
Will you remember me?
Don't let your life pass you by
Weep not for the memories" -
I Will Remember You by Sarah McLachlan


If you haven't read MOM-NOS' post here about ASD and PTSD, you should.  Read it here http://www.hopefulparents.org/blog/2011/2/11/asd-and-ptsd.html

Alysia Butler is a stay at home mom to three boys, one of whom has autism spectrum disorder.  When she's not buried under piles of paper, she writes about her kids and other things at Try Defying Gravity and on twitter at @trydefyinggrav.


  1. um....wow....you are in my brain.
    You know the other time that gets me? When you have to make copies of things. Every time we go to a new specialist, or school, or even IEP meeting, I bring copies of everything. Because I always seem to need it. And I stand there at the copy machine and bite my lip, because as pages zoom by me in that bright light, it hits me just how many pages I copy now. I don't like that the amount of pages is getting thicker...they seem like a metaphor for how heavy my heart feels at that moment.

  2. This is exactly why we have only one. I cannot imagine going through it all again. You're in my thoughts.

  3. Alysia I want to send you a GIANT hug
    SUch a beautifully written post and so much pain in it

  4. Sigh. Some things are the same, but many things are, and will be different. You know how much I get this. Hugs with storm troopers in the middle.

  5. I have two of those thick specialist and therapy folders, I know what this feels like, too. I have found myself pinched and squashed by certain pieces of paperwork, the memories are triggered and they come rushing over me. It can be hard to put them back in their 'box' sometimes. It is a bit like the memories are stuck to me, my sister described trauma recently as a bit like being 'slimed' by Slimer from Ghostbusters - it covers you, sticks to you and it takes ages to get it off, and even if you do, you still feel like it is stuck all over you.
    I adore Sarah McLachlan, and this is one of my favourite song.
    This is a rocky time. Go gently with yourself.

  6. Sending good thought to you, my friend.

  7. Alysia...wow, sounds so incredibly overwhelming. Hang in there. One step at a time (I try telling myself that too on a regular basis.) Sending good energy your way!

  8. Thank you everyone. You just never know when something with trigger those memories, but I'm glad I have you all to help me through it :)

  9. Wow.
    It was the paper work that did me in the second time around as well.
    I hate those files. There is no where in them to write all the good stuff.

  10. Alysia, I understand all about the flashbacks! I can't dim the light in Lennon's room b/c it reminds me of all the nights his first year that turned into mornings while he screamed and screamed. I had a hard time with his birthday the other day and Stella wanting to look at pictures of him at the hospital, it brought back the feelings of sadness and desperation even though I had a healthy little boy. I had a hard time waking him up and saying Happy Birthday b/c it made me think again of that first year when I would stare out the window and just wish I was anyone else but me.
    Hang in there my friend! I love your blog b/c it reminds me that we all have our memories and daily struggles. Thanks again for sharing!

  11. I'm filling out forms for the same kid... all over again, right now. God, I feel for you Alysia. You're in my thoughts.

  12. Alysia, such a beautifully written piece of your heart. Hopefully, by sharing with all of us we can take away some of the heaviness it must feel. I'm feeling it with you. (((Hugs)))