Tuesday, February 12, 2013

How To Learn "What's In A Name" in 6 Months

February 14, 2013 is the 6 month anniversary of James' diagnosis. I've been debating what to write about: How 6 months of therapy has effected James, how our lives have changed in these 6 months and what it was like before then, what pushed me over the edge to 'run away' to my mom's house in Texas, and other things that are too long to list. I decided that of all those topics I'd share some of the things that stood out to me the most.

Jan 12, 2013- 5 months in,
and the same day he said "ouch" for the first time.
Aug 11, 2012- 3 days before
our journey began

What started us down the autism road was an article on Babycenter.com in July 2012 about a husband that no longer enjoys parenting. Somewhere in the comments there was a mom who admitted to feeling that way. I didn't enjoy parenting and hadn't for a while. Chris was working full-time and going to school full-time. He was doing that for us and he loves his babies and loves being a dad, but I would wake up and count the minutes until nap time, and then the minutes until Chris got home, and then the minutes until bedtime.

The biggest supports that I had around me were Robin, my mother-in-law, and Tami, my sister-in-law. Robin's boys (17, 16, and 12) were about to start marching band and had Boy Scout activities and she needed to be a mom to them (which she is very good at). Tami got a full-time job, which I totally understand but that left me alone during the day. And in a month when the new school year started it was going to get worse. Chris would be in his second to last semester and was taking three 400-level classes so we would see him even less than we already did. Some days he wouldn't even get to see the twins at all. So I was going to be alone, all day, almost everyday.

Robin and Tami giving James some of his favorite type of kisses

Around that time we had been planning a trip in August to go Texas to visit my parents. I told Chris about the article. I told him about how I couldn't handle being alone all the time and that when we went I wanted to stay there and not come back to Utah until around Thanksgiving. I think I broke his heart.

This was a shopping trip where James was acting so out of control
that Chris took him to wait in the car until me and Lily were done shopping
(James is watching Barney)
There were a lot of days and incidents that made me feel that way. We had a nice little trip to Costco once. James was screaming and freaking out from the second he saw the cart. We had to move Lily to her own cart because he kept hurting her (not on purpose). I ran away with Lily in her cart to get all the items we needed. Chris stayed with James trying to entertain him, you could hear James across the store. We caved and gave him the iPod, but  James still didn't stop screaming so Chris tethered his phone to the iPod and bought James an app from Baby First TV.

James was so stuck in his daily routine even the smallest thing would throw the rest of the day off, and sometimes into the next day. In the morning we would wake up and snuggle on the couch and watch Curious George 2 and then went onto the next part of our routine. One day an occupational therapist from our state's early intervention program showed up before Curious George was over and I had to turn it off. It was a knock down, drag out tantrum. The OT ended up leaving after about 15 minutes when it was obvious that nothing was going to get done.

Watching George one weekend morning with daddy

And the morning after we had rearranged the furniture? Forget about it.

I do have friends and they invited me out but you can't take a kid like James into public, I couldn't even take James to a park because he has no sense of danger, like run into the middle of the street or touch a hot stove or decide that rolling down the stairs would be fun things to do. It was to the point where Lily was missing out on life because I was too afraid of what would happen, especially since he didn't even answer to his own name.

I don't know if he even realized he was on a horse
Then about two months into therapy something happened that truly rocked me. Our therapist brought her new puppy over to meet us and James didn't even react. A cute Weimaranerer/Chocolate Lab mix, a sweet puppy who didn't jump all over him or overwhelm him. Nothing. We are big animal people in my family. I can't ever remember a time when we didn't have a dog. After that day I got to thinking about the time that we had met my mom's new goats and we had to force James to sit in my mom's lap and hold some celery, and how I had to bribe him with Diet Coke to ride one of her horses. I just chalked it up to sensory stuff.

When I asked our ABA program director about it he said that at that point James might not view animals as living things. To think that James could get an autism dog one day and he would not know that it was there to be his companion, helper, and friend was almost more than I could handle. I'm happy to say that now when Sadie, the puppy he met, comes to therapy sessions with her mommy James says her name and will go lay his head on her side when he is having a tantrum to regain his emotions, or give her high-fives on her paws!

Gizmo, our Pugshire, half pug half yorkie. He's been here since
James was born but James didn't know who or what he was.

Here are a few Facebook statuses that I have posted over the past six months:
  • September 17, 2012- First day of ABA Therapy. James' therapist brings James out of the room all excited. "He said 'mom' ". Then we asked James who I was and he said "Mom-mee". First time ever. So worth $100,000 therapy. 
  • September 24, 2012- Today James called me 'mommy' for the fourth time, my mom was on the phone too, it was awesome. Still waiting for 'daddy' though
  • October 1, 2012- He did it! He just called Christopher Heuer daddy! Yay for James! Holy choked up. So wonderful. Talk about making the rest of my week!
  • October 24, 2012- JAMES JUST SAID LILY!!!!!!! Oh, man, gotta catch my breath. Pretty friggin' cool!!
Dude, mommy, she's totally drinking my soda

  • November 4, 2012- Get ready to cry: They're playing WITH each other. Not Lily trying to get him to respond to her or pulling on him. Not both of them playing with the same toy at the same time. Not both of them playing with the same grown-up at the same time, but WITH each other. She put his sandals on him and they're running around the basement. He's chasing HER (not her chasing him), and they're both doing the patented shriek/laugh thing that they do. They've been going at it for about ten minutes and he hasn't gotten distracted by any of his other toys, even walking on top of them to get to her. And at some point as he was running by he said something that sounded like 'fun'. That is ABA and thousands of dollars at work. SO, SO worth it.
    -They will be 3 in six weeks. It's taken poor Lily three years to have her best friend play WITH her. She won't remember it but me and her daddy (Christopher Heuer) will.
  • December 11, 2012- That moment when someone says "I admire you for the way you handle all of your problems and take care of your family at the same time" and you ALMOST say back "No you don't, you're just glad it's me and not you".
  • December 17, 2012- $30 short in James' therapy account for payroll this week. Makes me sick to my stomach. But he did say 'I love you' to our head therapist last week, so it kinda reminds you what you're doing this for... right?
And the most recent Facebook status that is one of the most important to me:
  • January 12, 2013- So today James said "Ouch." Why is this a big deal? Before today James has only said "Ow" and only during play- this means if anything has ever hurt him he hasn't been able to tell us.
    Last year we were in Disneyland and James started to cry. We had no idea why. We left the park and carried him for almost a mile back to our hotel room with him screaming bloody murder. When we got to the hotel room we stripped off all of his clothes and he was fine. This makes me assume that he was too hot (he had a lot of layers). Not the same as saying "ow" or "ouch" but he couldn't tell us what was wrong.
    Today I was putting his shoes on and someone had tightened them and they didn't just slip on like normal. We were just going in the car to go through the drive-thru pharmacy so I didn't want to take the time to undo the laces so I was just kind of wedging it onto his foot (don't judge, you know you've done it). After a few moments he said "Ouch". He told me that I was hurting his foot, Robin heard it. I loosened his shoe which he then promptly took off and laughed at me. And we praised him so much for saying it he just kept repeating it. But here is one time in his life that he didn't have to hurt because he was able to tell us.
Lily and James in their layers at Disneyland 
(notice the cute gloves)

And our newest "big deal" status:
  • January 23, 2013- James called Robin "grandma" for the first time over the weekend. Whoever knew that two syllables could cause so many happy tears. 
I think the thing that has happened over the past six months that brought so many happy tears are names. James has learned how to say the names of our family members AND he will say their name when he sees them (if he feels so inclined). In November James heard my dad talk, not even in his line of view, and he said, "Papa". I remember all of the times he said each of his therapists' names for the first time. The first time he said "Gizzy" (our dog). I wish I could put into words how much hearing these names has meant to the people around him, I wish I could let other people experience it, it reminds me how hard this little man is working everyday.

I turned 28 on Feb 4, Chris and I are 6 months in, I can't really see the light at
the end of the tunnel. Ask me again in another 6 months and maybe I will.

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