A Day of James in Text Messages

James with his cousin on Grandma's phone

     A few months back when we were planning a trip to my parents' house in Texas (which turned out to be the trip that we were on when one of my mom's close friends got us in to see a great developmental pediatrician who, in the end, diagnosed James) and I had a text conversation with my sister-in-law.

     Now, a disclaimer, I am a very blunt, sarcastic and cynical person, but really, everyone who knows me knows that I'm really that way to keep from being ooey-gooey emotional all the time. So here we go (I did make a few grammatical fixes and other notes):

Tina (my sister-in-law): I'd love to see you and the twins everyday!!

Ginger (which is me): Not James.

T: He's a cutie!!!

G: I challenge. I'll take Lily and the girls for a day (the girls are my nieces, 5 and 3 at the time), you take James, including bath and getting ready for bed. And iPad or iPod for only four hours (not as much as it sounds).

     And getting him to eat at least one bowl of cereal for breakfast and half a can of Spaghettios for lunch (that's right, I didn't mention dinner because he never eats dinner).

     Oh, and staying outside for at least a half hour (with no John Deere ride-on).

     And that challenge doesn't even include keeping him from hurting Lily (*I have a footnote for this comment) or having to listen to Lily ask 1,000 times 'what are you doing?'

T: Haha do I get to use Ki (my brother)?

G: Not until around 7 (bedtime is 8:30). But you only get him for bath time and to help get James ready for bed. Mainly to hold James down so you can dress him and then shove his medicine down his throat. Oh and keep James from standing up in the tub and/or drowning in the tub.

     You can also have Ki if James doesn't eat during the day at all. Otherwise Ki is in the other room doing homework.

     I won't throw in the 'uncles' interrupting every diaper change and every meal.

    And if you feel up to it you can take him grocery shopping with him buckled into the front part.

    And mom can only babysit during nap time. But don't worry, I won't throw in one of his therapist visits but there's always his 'learning box' exercise. Oh, and you have to read him a Dr. Seuss type book at least 3 times during the day and keep him from ripping any of the pages. Oh, and we've been working on 'no hitting' and 'no pulling your diaper out from under you' and 'no hair pulling' rules. Those aren't going so well (there's also 'no laying on top of Lily' but since I'll have her that one's kind of null).

T: Is he really that wild?

G: Everyday.

    From about 7:30 in the morning to nap time at 1:45-4:00-ish (but I give him his iPod during nap time otherwise he won't stay in his crib) and then 4:30-8:30

T: Wow. That's intense! I'm sorry =/

G: Yesterday he had a great day. We were even able to brush his teeth at bedtime but he didn't eat lunch but we were able to go to Target without having to turn the dvd player on in the car (on the way there). I did have to run in and get popcorn and then he had his ipod the whole time but he did eat half of the small fry we bought him on the way home.

T: Wow! Is there anything he likes to eat?

G: Easy mac, Spaghettios, yogurt (but it has to be raspberry), apple slices (with no peel), potato chips, some cereals, sometimes a glazed donut (yeah, he usually ends up feeding it to someone else), bananas, shredded cheddar cheese, black olives (for the record these are the foods that he would eat that month and all of them he would like one day and hate the next. I learned my lesson, he went through a vienna sausage phase and a mandarin orange phase, so I bought cases of them, and he wouldn't eat them the next day). His FAVORITE food (and the only food he will always eat) is French toast with butter and powdered sugar but it has to be fresh. And mini m&ms.

     And with everything he either has to touch it to his lips before he'll eat it or dump it on the floor and eat it off the floor.

T: Wow!

That was everyday for me.

Even with all of the help I had around me I still felt alone, all day, every day.Thus running away to Texas for a month and James getting diagnosed. I wasn't devastated, I wasn't even surprised, I just wasn't expecting it.

Lily and my nieces, aka The Grand-girlies. Would you believe that these three are easier than one James?

*So my footnote about James hurting Lily, James flaps his hands pretty wildly when he's mad and when James get really upset Lily gets really upset and just wants to hug him and make him feel better. He does not seek her out and beat on her or anything. And we do remove Lily from the situation and take her to another room or move her across the room. Part of me thinks that Lily knows that he doesn't mean it. When he's tantruming or something of the like and he ends up getting physical with her she doesn't get upset. And the next time it happens she still brings him his blanket and sippy cup and rubs his back.

And he loves her, when she gets really upset he does too. And James will try to steal my blanket or Chris' blanket but he never tries to take Lily's (unless they're passing toys back and forth between their cribs).

James Said Lily!!

On October 24, after 1 month and 10 days of ABA Therapy, James said his twin sister's name for the first time. I don't know how to describe it but it was on the level of hearing him call me "Mommy" and call Chris "Daddy". This is how my sister worded it on our Facebook page:

 "HUGE NEWS: James said Lily for the first time tonight. Lily who has been by James' side since before he was even born. James called his twin sister by name. All this made possible because of ABA therapy!"

Lily is Twin A and James is Twin B

'Meeting' Each Other on Christmas Eve

I don't remember when it started but when we were teaching Lily how to say the names of different people we would ask, "Lily, can you say James?" and she would reply, "Brother." And every time we asked her to say James' name she would say "Brother" instead.

Sometimes in the morning I hear her yelling "Brother! Wake up! Wake up, Brother!"

When he does get up before her and I go in to get her, her first question is always, "Where Brudder doe?" (and usually followed by "Where's daddy?").

I don't think Lily realized it when he said it; James was heading back to therapy and we were telling him to say "Bye" to everybody and he said "Bye Lily". It wasn't echolalic (meaning just repeating was he was hearing without understanding it). It was a string of TWO WORDS and he KNEW who he was talking to.

C'mere you!

Our facebook page is https://www.facebook.com/TheOrangePuzzlePiece

Helping James - Autism & ABA Therapy

James has beautiful green eyes.
Eyes that we haven't seen much of because of
his poor eye contact due to his autism.

On August 14, 2012, James Heuer, an almost 3 year-old little boy, was diagnosed with Classic Autism. His family also learned that James has Cognitive Communication Disorder and Developmental Dyspraxia. James’ family was finally able to know why James never answered to his name or interacted with his twin sister (signs of autism). They were able to know why James never seemed to understand what was said to him and why he always got so upset when he tried to communicate with others (Cognitive Communication Disorder). They now know why James had such bad lack of coordination and couldn't seem to hold his own weight (Developmental Dyspraxia).

The recommended treatment for James is 35-40 hours a week of Applied Behavioral Analysis Therapy (ABA Therapy). In ABA Therapy James is presented with a task and is asked to repeat that task until he is able to do it as well as someone his own age, such as turning around to answer when his name is called. When his therapists come to the house to work with him we tell his twin sister that his friends are there helping James ‘learn how to learn’ because he doesn’t know how. James has a close family member who was diagnosed with autism when they were James’ age. This family member participated in ABA for 40 hours a week for almost 3 years. That family member no longer carries the diagnosis of autism. While losing the diagnosis is the best possible outcome of ABA, any amount of therapy has been proven to improve the life of a child.

Though very expensive, ABA is widely recognized as a safe and effective treatment for autism. It has been endorsed by a number of different states and federal agencies, including the U.S. Surgeon General. An in-home ABA program providing the recommended 40 hours a week of therapy will cost around $50,000-$60,000 a year. Unfortunately, the state of Utah views autism as a behavioral diagnosis and not a medical one and therefore does not require insurance companies to help pay for autism treatments. This means that James’ family will have to pay for all of his treatment out of pocket.

On September 17, after 4 days of ABA therapy, James was brought to his mom during a session and called her 'Mommy' for the first time in his life. On October 1, after 18 days of ABA, James saw his dad and called him 'Daddy' for the first time. Those moments and future moments like that will be worth every cent earned, fundraised, begged for and then spent providing James with ABA Therapy.

“Sometimes people say that the puzzle represents autism because it is very complex and autism is a puzzle to all of us.” We don’t know what causes autism or why certain children have it and others don’t. Please help us slide James’ missing puzzle piece into its place by donating to give James the treatment he needs.

Donations

We have been asked several times if we're taking donations to help pay for James' ABA therapy. The answer is yes! However, I didn't have any easy (online) way to accept donations, so last night I spent some time setting up accounts with Paypal, Amazon, and Google to accept donations. These all take a little bit from each donated (2.9% + $0.30 on each transaction) so we don't get 100% of what is donated, but for the convenience factor it's probably worth it. If you don't like the idea of some of your money going toward the fees, we can accept checks and cash.

100% of what we receive from donations will go toward paying for James' therapy, be it for materials or paying the therapists we have hired. Unfortunately since we are not a non-profit organization I can't give you a receipt for tax-deduction reasons, but you can rest assured that your donation is going toward a good cause.

Edit: Google is retiring Google Checkout, so I have removed the Google donate button.