Tuesday, December 9, 2014

The Lost, But Not Forgotten, Miracles

In January I wrote a post about happiness. I had made a list of all of the wonderful and spectacular things that had made me happy over the past 2 years. And then of course, me being me, I lost the list before I wrote the post. A few days after I wrote the post, I found the "List of Happiness." On that list there were some miracles involving Chris’ parents and my parents that I just could not leave out. Ones that I think about all the time. They are things that some people might not really notice or think these miracles are as big of a deal as they truly are. Miracles that are giant triumphs. I’ll go in the order I think I remember them happening.

James may or may not have been
The first one involves my dad. I want to say that this happened on the trip when James got diagnosed. One day my mom, James, and I were coming back to my parents ranch after running some errands. They live at the end of a small narrow road so that if two cars are coming from opposite directions one of the cars has to pull to the side (or it they’re small cars they just pull to the right so they have room to pass each other). As we’re driving down the road my dad happened to be leaving the ranch to run his own errands. My mom’s truck is bigger than my Dad's, so we pulled over. As my dad was driving by he stopped to talk to us. I don’t remember what my dad was saying but after he started to talk we all heard a little voice from the backseat. “Papa.” James couldn’t even see my dad. James only had four words at that time. He hadn’t even called me “Mommy” yet. But he heard my dad’s voice and knew it was his Papa.

No matter what, whether James looked at him or not, whether James even gave the slightest notion of his presence my dad has always ALWAYS talked to James like he is a real person. A person who matters and is worth talking to.

No matter what's in Jeff's lap - a game, an ipad, a remote - when
these two little people climb up, his lap is their lap, and that's
all that matters.
Next comes Chris’ dad Jeff. We were a couple months into therapy but James still didn’t really answer to his name or talk very much. On this day everyone happened to be on the main floor of the house (we live in the basement). James was in the big family room playing with some trains. Chris’ youngest brother had been really into trains when he was younger so they had a ton of Brio tracks and engines. Jeff and Chris’ brother played with James showing him how to put the track together and how the individual trains can stick together to make longer trains. While James was playing, Jeff walked into the kitchen from the garage and started to talk with everyone. You can see the kitchen from the family room but I don’t know if James was looking or if he just heard Jeff but James stood up, walked into the kitchen, sought out Jeff, grabbed his hand and guided Jeff into the family room and the trains so Jeff could play with him. Co-play, with his grandpa. A little boy who had very little eye contact in general went to find his grandpa so that they could play trains together. It was so wonderful, I cry every time I think about when James did this. I wouldn’t be too surprised if it happened now, but back then it was amazing.

The Farming Game for Kids. 

Grandma makes us happy
Around the same time my mom was visiting from Texas. My mom, my siblings that were around at the time, James, Lily and I were lounging around in the big room in the basement. Lily was coloring, James was sitting on my lap kind of coloring too (we had a book open on the floor in front of him). During a pause in the conversation my mom looks over at James and says, “James, what are you doing over there? Come over here and sit with me.” And he did. Got right up out of my lap went over to my mom and sat with her. We’re lucky and around that time we had been able to see at least one of my parents at least once every two months or sometimes once a month, but not enough for me to think that James would be able to remember who she is. But he did. He went right to her, without hesitation.

Gramma! Ger'off of me!  Ok fine, please stay. Stay forever.

Jeff and Lily at Hellfire
And last comes Robin. Chris’ parents, a couple of his brothers, and his sister had all gone out of town for a weekend and had taken Lily with them. This was the same weekend as our trip to Toys ‘R Us (scroll about halfway down and you’ll see the picture). When they got home Sunday night everyone came down to the basement to let us know that they were back and how everything went (they had gone to an event called Hellfire to shoot off model rockets). When Robin came down the stairs to talk to us James was across the room from her playing with the Kindle, there were about three people between him and Robin. James noticed her, put the kindle down, ran over to her, with his arms out, and spontaneously, without prompting, hugged her and said, “GRANDMA! GRANDMA! I MISSED YOU!” I’ve had trips where I’ve been away for days and came back and James had never said that he missed me, so this was huge, this was EPIC.

At a marching band competition. It was really cold that night and all James wanted was his Grandma.

So in love.
These four wonderful people who have helped and supported me and Chris, who have encouraged James, and shown Lily so much love need to know about these little things that happened that I think about all the time. Most people who read my blog know I don’t post very often but when I found my list and realized that I had left these moments out I wanted to post them right away.

Without “Mom” (Robin) and Grandpa Heuer, and without Grandma and Papa Grawe, James would not be this far. The day that James was diagnosed it seemed like my mom, Gramma in Texas, had read my mind. She told me that she would do everything in her power to make sure that we would be able to get James this therapy. To help us make sure that he would get the 40 hours a week that he needed, even if it meant her doing the therapy herself.

Lily is Robin's clone. You look at pictures of Robin when she
was little they look the same. And in some of their pictures
you have to wonder if Lily belongs to Robin or to me

We told Robin and she said that we know what we need to do. She called Steve (James ABA program director) and got the ball rolling. I don’t know where I was but Steve had sent us a list of supplies that we were going to need for our initial training, and I wouldn’t have had any of it if Robin hadn’t done it for me. We wouldn’t have therapists if Robin hadn’t been there.

More Jeff and Lily at Hellfire
Our dads, the silent but steady rocks, supporting our moms in all that they wanted to do for us, supporting me and Chris so that we didn’t crumble, and all the while being there to let James sit on their laps while they worked at their computers. Chris’ dad, Jeff, has a side business where he makes “Train Games” (they’re games where you start a railroad from the ground up, selling stocks and buying land and a ton of other things that I don’t understand). Jeff volunteered his workroom where he made those games so that James would have someplace to do therapy.

Papa and Lily working on the ranch.
My dad has never, for even one second, hesitated to help us find a way to pay for things, or given up his frequent flier miles so that me and Lily could come to Texas because I need a break, or volunteered the use of his car if Chris’ car dies. He’s the place where I can go and feel comfortable saying anything I want. Where I can go and watch football or talk about the future I’m scared that we might not have, and he won’t push for more and won’t judge me. Who tells me that he’s so proud of my husband and how he takes care of us.

I’m so very lucky. To not share these memories that I have, that these four have given me, wouldn’t be right. Chris and I wouldn’t be the people we are if it weren’t for our parents. All of my and Chris’ siblings, all 13 of them, who have also supported us in so many unspoken ways, wouldn’t be who they are if our parents weren’t the people they are.

Hopefully these happy memories, giant triumphs, and miracles, will help show how much it helps to have the people around you support you in any hard situation. Be it illness, cancer, developmental disability, or so many others. Hopefully  someone will be able to share how worth it it is to give up so much just to hear a little voice say “Papa.”


I have to stop now because I’m crying and I’ve run out of tissues. Thank you Mom and Dad and Jeff and Robin. Sorry I lost the list with your miracles on them. I promise that I didn’t forget them and I promise that I never will.

Another Update: Chris is now 29. We are nowhere near where we thought we'd be. We still don't see the light at the end of the tunnel but when we put our kids to bed at night, they're happy (well, most of the time). 

We have a GoFundMe Campaign set up for James' Therapy. Please visit and donate. 

Friday, October 10, 2014

When Can I Give Up?

Let me preface this by saying that I won't give up. My loved ones won't let me give up. I can't let myself give up. But I want to. More and more everyday.

But after how many tantrums do we say this isn't working any more? After how much time and money do say that we just can't do it anymore? Then I think about how if James ever did understand everything, what would I say to him when he asked me why I gave up. Why I gave up on him.

I think about my situation from an outside point of view: I'm 29, I've been living in my in-laws basement for 5, almost 6, years, I'm a college drop out with no savings (we had to spend the rest of our savings to fix my van), no assets, and no plans for the future. I even worked at McDonald's for 4 years. Pretty pathetic, but I'm saying them out loud for once instead of being ashamed. Well, that's a lie. I am ashamed of myself. And embarrassed. I could have done better. I could be better. But I'm not.

My 29th birthday, and James with no eye contact

Will I ever be a grown up? With a house, a place I can call home, a place I can give my twins to call home. Because right now I don't have a place to call home, and it's a heart wrenching feeling. I miss home.

Huge pity party here. I hate myself for entitlement. We were recently driving from Texas to Utah, and our air conditioning compressor died. A couple thousand dollars and two plane tickets later we finally got home. With every single cent spent out of our emergency money. All that we have left are the twins' savings accounts, and soon they will be gone as well.

This year we did "Walk Now For Autism Speaks"
Autism Speaks has so much information, it's a place I know I can go to
to learn and find those resources for kids like James and families like ours.

There are so many resources out there today, to help children and adults with autism and autism spectrum disorders. People in the world are so much more understanding when they find out my son has autism. I could just give up and use those resources. Then Chris and I could save our money and get a house.

I'm so lost. It seems like there's no end in sight. But I won't give up, nobody will let me. And because I don't want James to grow up and have to live in a home because I couldn't stick it out. Please God, let me be strong enough to stick it out.

We got James reevaluated last August, almost two years to the day of his diagnosis, and they told us to plan on sending James to kindergarten with a shadow (a therapist). Where am I going to find a kindergarten to send him to? Inevitably it will have to be a private school. Private school tuition plus what I have to pay the therapist to be there with James... And what about Lily? A public school without her best friend? She'll be fine though, she's a good kid, she's smart and strong and everything I need to help me have faith that James could be like her one day.

Getting James' vitals
before the evaluation began
James being reevaluated at the Meyer Center
at Texas Children's Hospital

I've been keeping my eye out for jobs but when would I work? If I work during the day, the money I would earn would go to pay whoever's babysitting. If I work at night, when am I going to sleep? Mary Kay and those other things, I'm way too shy. It's one thing to write a blog or to do a fundraiser but to be a salesperson.... What if I sold someone a defective product but then I couldn't afford to replace the product because I've already spent the money on therapy?

But if I got a job, if we weren't on the brink every pay period (twice we have fallen off the brink, thank the bank for overdraft protection) maybe I won't want to quit so much, give up so much. When kindergarten comes, maybe I'll find an office job that will be very understanding if I suddenly have to leave to rescue James (well, rescue the school from James).

First day of Pre School 2014
We try so hard, and things just keep coming and coming: our car breaks down, pre-school tuition is increased, Lily rips a hole in one of her two pairs of jeans. I'd like to think that we are good people, and we just keep having bad luck. And me, being the dramatic me, starts getting more upset with myself because at least James has autism. What about a kid with cerebral palsy? Or a little boy with Duchenne's (Muscular Dystrophy)? I should count myself lucky because things could be so much worse. What right do I have to have a pity party? Who am I to complain--I should count myself lucky that all I have to "deal" with is autism.

One of Lily's "talents."
A picture from Lily's dance class last summer.
We can't afford for her to go this fall.

I went to Texas again, by myself, alone. I had no interaction with therapy. But I did try to interact with my kids. Every night I talked to them on the phone or I face timed with them. Not once did they say "I love you" or "I love you too" unprompted. I think once out of the ten days James tried to take the phone out of Chris' hand. And there was twice James asked when I was coming back but that's it. What kind of mom am I if my kids, my 4 year-olds, don't even miss me while I'm away? I'm right next to them every day but I have so much, so much to learn, so much to do... I want to laugh and giggle and tickle, not earn a PhD in ABA.

If I gave up I could focus more on them.

Cultivating their talents, not being too stressed to play with them. I wouldn't have to stay up late combing through therapy notes. I could finish the homemade car/road table that I started making for James three years ago.

But I won't give up. I got Photoshop Elements for my birthday last year. I'll just wait to learn how to use it. Instead I'll learn how to do Mendability (a new facet that we've added to James' therapy). And I will do it the best that I can.


Don't tell me I'm strong because I'm not. To be strong you have to choose to be. Choose to be strong and persevere. I have no choice. I do choose to do everything I have to do to the best of my ability. But I still want to give up, especially on those days that James has tantrums. Days like today.

Our little family. I may not have a house to call home but I do have these three people who give me a home.

Our Walk Now For Autism Speaks Team- Top Row, Left to Right: Megan Braithwaite, Sam Grawe, Matt Heuer. Next Row: Eden Hoffman, Sierra Braithwaite, Rebecca Grawe, Chris Heuer. Next Row: Amanda Jensen, Megan Lloyd, Ellen Grawe, Ginger Heuer. Front Row: Lily Heuer, James Heuer.

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