Tuesday, January 21, 2014

Smiles Through the Tears

Last time I wrote about fear but this time I going to write about happiness. Happiness that we were able to have because of ABA. How that happiness has affected all those around our little family. I plan to throw some things in here that happened along the way that made me happy even if they did not stem from ABA. Believe it or not, this post about happiness is probably going to be longer than most of my other posts.

My absolute best memory (well, three memories) was hearing James call me "Mommy" and call Chris "Daddy". On September 17, one of James' therapists Jenna brought James out of the room where they were doing therapy and said, "He just said Mom!" Then she said, "James, who is this?" "Mom-mee." When Chris came home from work on October 1st, my brother-in-law Matt was holding James. We pointed to Chris and asked, "James, who's that?" And James said, "Daddy!" You have to understand that before this we had never even heard "Mama" or "Dada" from James. Three weeks later James said "Lily." I probably mention these three memories in every blog post.

The second day of our initial training Steve
walked in, and James acknowledged him
first (James looked up and said 'hi' to 
Steve before Steve said anything to him).
On the first day of our journey our program director, Steve Michalski from Redwood Learning Center, sat in our family room and tried to explain what ABA is, how it has come into practice and what our future was going to look like. We definitely all looked like deer in headlights.

We knew Steve because he had been a part of our family 16 years earlier when he came to work with James' Uncle Ben. Uncle Ben--who no longer carries the autism diagnosis thanks to ABA. (I've only been in the family for 9 years so I had never met Steve.) When Robin called Steve to ask him to help us with our journey, Steve said something to her that might not be considered happy but something that really touched me. Steve told Robin that he had hoped to never hear from her again. Knowing that there was someone out there that was hoping that our future didn't involve ABA was really nice to know. Comforting to know.

Uncle Ben and James

A happy moment occurred during that first day. Steve had worked
with our schedules so that my mom and sister-in-law Tina could
fly up from Texas and participate in the initial training. I had another
sister-in-law Rebecca that also came to the training. Both of them
were pregnant at the time, and when Rebecca walked in, Tina went
up to her and stuck her belly out sit touched Rebecca’s and said,
"Look! The kids are playing!" A great part of a very stressful day.

For the rest of this post I'm probably going to jump around chronologically because I don’t remember dates so well, and everything that’s happened in the past 16 months has kind of been a blur.

There was one time that it was raining so I wanted to take James outside to feel it. I was pretty sure he would understand rain. That the stuff falling from the sky was rain. After a minute he started to run around, and he said, "Wind." We didn't see that one coming. 

A trip to the grocery store for nothing.
James had been asking to go so we did.
One day, sometime last December, James had been asking to go to the grocery store. The next day we told him that if he did well at preschool, we would take him to the grocery store afterwards. We decided on the way to the store that we were going to let him walk while we were in the store and that we were going to let him pick out a donut. Normally we ride in a cart and get a balloon. Needless to say, James had a giant meltdown. Like any kid, you can’t give in to a tantrum, just work through it. 

When we were standing in the checkout line with a screaming James, there were some firefighters from the Lone Peak Fire Department in front of us. The firefighter in line right before us turned around and started talking to James. Asking James about his day, asking what we were buying. I remember the firefighter was buying an avocado, he showed it to James and asked him if he knew what it was, asked James if he wanted to touch it to see what it felt like. It was like the firefighter knew James and how to talk to him and how to redirect him. He didn't hesitate to turn around and talk to us, to help us. I'm sure that firefighter doesn't know, but the kindness he showed us that day, trying to help us, I’m at a loss for words. If anyone from the Lone Peak Fire Department ever reads this, please know that firefighter made a huge impact in our lives that day, and I will remember him for the rest of my life.

    On Chris' graduation day we went to a restaurant after
the ceremony. As we were leaving the restaurant, James
passed Chris' cousin and she said, "Bye, James." Then
James said, "Bye, Kim." We had never worked on Kim's
name, and we hadn't really focused on pointing out who
Kim is. Kim would always talk to James when she came
over. She was having one-sided conversations with him,
but she still always said hi to him. It totally paid off.
(This picture is of Uncle Daniel and Kim walking in
Disneyland with James)

    Walking while not being in the cart is a huge accomplishment
for James. Earlier this year Lily had gone away for the weekend
to shoot rockets with Chris' family leaving James home with me
and Chris all to himself. I wanted to do something special, not 
just go to the McDonald's play place, something better. We
decided to go to Toys 'R Us and let James walk around the
store. It was hard for me but he was wonderful. He didn't have
any tantrums, take toys from another person or throw something
on the ground. He walked around picking up toys, looking at
them and then putting them back (mostly). (This is a picture
of that trip)

James' love of chocolate cake
dates back to his early years
One of James' biggest challenges comes from his cognitive communication disorder, in the beginning we all sounded like white noise to him. After about seven months of therapy, Steve, James, and I plus all of our therapists were having a staff meeting when all of the sudden James interrupted us. He was playing with a Mr. Potato Head, and the back popped off. James looked right at one of my therapists and said, as clear as day, perfectly, "Rachel, it broke." I swear everyone in the house at that time heard the bang from all of our mouths dropping. He looked right at her, and he pronounced it perfectly.

In another meeting, I was telling Steve about how James would do anything for chocolate cake. Because he would do anything for cake you can’t say the word. So I spelled it out, "He'll do anything for chocolate C-A-K-E." James, remember from his diagnosis, intelligent verging on the precocious, said "Cake." We didn't really believe it so Steve asked James what P-I-E spelled. "Pie" and then we spelled cake again, and he said cake. I’m just glad he hasn't figured out B-A-T-H because he loves baths (now) and will even put the iPad down to take one.

This past Thanksgiving we were able to share a happy moment as a family. James has a very hard time eating. He went almost a year without gaining any weight. One of his programs in therapy is even called "Eating Skills". This year, when we sat down for Thanksgiving dinner, James sat down with us. He ate the same food we did, around the amount that a normal four year-old would eat and he did it without a fight. He even left the table to go potty (we are doing a potty training program, well, we are, James is not) and came back without a problem. It was amazing. We didn't want to comment about it or notice it on the off chance he'd stop. So, instead, once dinner was over we clapped and cheered.

Daddy, James, and Cousin Rudy
playing with Legos and Lincoln Logs
Something that made me sad was when we went to visit my family in Texas last June and we were going to meet my new little nephew (Tina's baby who was "playing" with Rebecca's baby at the initial training). Steve warned us that James probably won’t know that Rudy is a person, that James would think that Rudy was just another object. We even have a program called Expressive Object Labels where James is shown a picture of something and then identifies it. "Baby" was one of those pictures.

When we were in Texas I asked James, while pointing to Rudy, "What is it?" (that is the wording we use in the program). James said, "Baby." I took the next step and asked, "What is he doing?" "Crying." "Can you say, 'The baby is crying?'" "The baby is crying." Well, he knew that Rudy was a baby and that Rudy was crying, and that is sure good enough for me. And it paved the way for a huge, huge moment in James' future.

The other baby "playing" at our initial training is Ellen. She was born in May, and she came over to visit in November when she was about six months old. When James walked out of the therapy and saw Ellen, the first thing he said was, "It's a baby!"

Lily, Uncle Sam Sam, and Baby Ellen

James had a sippy cup and tried to share it with her (he even put it up to her mouth). James also had a book that had pieces you take out to reveal pictures underneath. James tried handing Ellen a piece and said, "Your turn." When she didn't respond, he started to turn to walk away. We tried to get his attention to keep them "interacting." James noticed a pair of socks on the ground that were by Ellen (remember James has a thing for socks), he picked them up and tried to put them on her feet which made her laugh. James looked up and said, "He's laughing." We were freaking the heck out because, hello, he was talking, and he was talking about something and talking about it in the correct situation (we did correct him on the gender, having him say, "she’s laughing").

Oh, Baby Ellen, thank you for showing James that babies are people! And Cousin Rudy, thank you for showing James that babies exist in the real world and not just in pictures! We love you both and thank you more than you will ever know.

The cover of James' Miracle Book- the quote is from Men In Black 3

We have a "miracle book" that we keep in the room where James does therapy. It's really just a planner where we write amazing things that happen. I'm able to breathe deeper when I read through that book. The room seems brighter when I can open that book, flip back a couple months, and write down a miracle that we had forgotten about because so many other things were happening. Happy moments that occurred while we still had tears and couldn't see them until we had time to wipe the tears away.

I'll admit it, I cry when I remember these things, but I still have that fear in the pit of my stomach. The fear that keeps me writing and rereading these memories, these accomplishments. Telling myself that even though there is SO much that could happen at the preschool field trip next week (they're supposed to go sledding) he needs to go, he HAS to go. Maybe Lily will fall, and he will run to her and ask her if she's okay. Could you imagine that? Him protecting her like she protects him?

And now I want to talk about Lily. I've had people mention that all my Facebook updates are about James. Or mention that I need to make sure to not forget her while everyone is focusing on James. Please know that I know these things. Some days I feel like I know her better than I know anyone else. We do little projects together, she and I have taken special trips to Texas together (best birthday present ever), she has special dates with Grandma and auntie (and I'd say that at least 80% of the pictures on my phone are of her). And recently we got her a puppy.

Lily and Tonka on Christmas Morning. She knew she was getting Tonka.
We were actually visiting Texas when he was born last September.
They tied a little ornament on his collar that said "Lily"

James has all these people in his life that are always there for him. Being nice to him and trying to help him. Lily is a strong-willed little girl, and sometimes she gets in the way of that help and all she really wants is to help James. So we got Tonka, and he is there for her.

Tonka is a Mini Dachshund that is the son of my sister's two dogs. Lily is a great puppy mommy. She goes outside with me when I take him potty, she helps me clean up when he has accidents in the house, she helps feed him, she watches him walk through the house to make sure he doesn't chew on anything, and she sleeps with him every night. And Tonka does his job.
So tired.

A few days ago James was having a hard time during dinner, and Lily is not allowed to help him. She has to sit in her chair and watch, which upsets her. We always try to have someone be with her during those times, to remind her that brother is okay, and she doesn't have to worry. This particular time telling her those things wasn't helping; the more upset he got, the more upset she got. So I stood up, got Tonka out of his pen, and sat down next to her. He put his head right in her lap, she took a deep breath and was better. Lily, Tonka, and I finished dinner while Chris and Uncle Matt helped James.

Our Tonka Truck

Trust me when I say that Lily and her happiness are just as important to me as James'. Even though a puppy means more time and more money, she needs him, and I want her to have him. Thank you for your concern, but I know that I can't forget Lily and a puppy isn't going fix everything, but for now there is someone in her life that is there for her and only her, who will listen and do everything he can for her (though, her feeding him goldfish behind my back might contribute to his attachment to her…).

We have tears but we have happiness too. I have to remind myself most of the time. But seeing firefighters and babies, feeling the wind, eating chocolate cake and standing outside in the snow at 3 am waiting for a puppy to pee help. A lot.

Fear or no fear, we are happy with where we are, and that James is making progress. We are lucky to have all we have.

P.S.Thank you Auntie 'Nali