You know when you're cleaning your house, and you're sweating, you've filled up a couple garbage bags and done 4 loads of laundry. But then you step back and look around, and you can't even see a difference? Yeah, I think that's what autism is like to us moms and dads. (And teachers, doctors, grandparents, and pretty much everyone who is emotionally invested in the child.) You work so hard every day, with no breaks. You feel so accomplished when you put your child to bed, and then you wake up the next morning, and he looks at you but he's not really looking at you – he's looking through you.
The five minute mess. A task achievable by any toddler
James and his animals and books
Why does any of that matter when it comes to James missing me? At the end of February I went to visit my parents in Texas for 10 days, when I came back and James saw me there was... nothing. He didn't smile, say my name, hug me, or even reach for me. It was in the morning, and I was getting him out of bed. He's a pretty happy kid in the morning. He sits in his bed reading his books or talking to himself or his toys. Usually when I go in there to get him, he stands up and says, "Hi". Nope. Nothing. We walked out into our big room, and he went right for Chris, the lovesac, and the blanket. So much for missing me.
The more I think about it the harder it is. If he doesn't care that I'm back does that mean that he didn't care that I was gone? I was so worried because 10 days is a really long time. I joked that I was more worried about Chris missing me than James. I wish I had been wrong. (I am, however, very lucky to have a husband who loves me so much.)
When I give James big hugs and whisper in his ear how much I love him, I can't help but wonder if he even knows what "I love you" means. Yes, he will choose me over someone he doesn't know and pick my arms to comfort him, but how much of that is because I am what he knows, and how much of that is joy and warmth created inside him because he knows he's mine?
I love you buddy, I promise the Zoo and the Carousel aren't scary
Here's the part where everyone assures me that he loves me and knows that I'm his momma. Yes, I know that. I'm sure if something happens to me he'll always know, but right now, he won't miss me. He has that special connection with Lily but no one else (there was an instance when Chris, Lily and me went to Idaho for a night and he wandered around calling her name and looking for her). Once something is gone, he'll notice that it is absent, he'll ask about it, but the feeling of missing something is something that he's missing.
Ahhh! Mommy put us in matching shirts!
Lily is making sure that Daddy's hair is perfect
The day before we left Texas to come back to Utah, Lily was in the car with my mom and two of my sisters, and she told them that she misses her family – her daddy and her brother. When we finally got off the plane in Utah and walked out to baggage claim, she did what every little girl who adores her daddy would do, she ran across the room with her arms out and her little backpack bouncing from side to side screaming "Daddy!" and jumped into his arms (one of those things where the people who saw what happened choked up and wanted to hug their daddy).
How I so, so wish that James would do that for Chris, instead of someone carrying James up to Chris, pointing to Chris, and saying, "James, who's that? James, that's Daddy. Did you miss Daddy? Daddy missed you!" James would lean into Chris' arms, and once his memory was jogged, he'd probably give him a hug, but definitely not the "Ohmigosh it's Santa Claus!!!" type reaction that makes the whole room smile.
Playing on tablets
My in-laws told me he was punishing me because I left him for 10 days. I said it was an autism thing. I asked our ABA program director, and he said it's an autism thing.
There is a part of me that didn't mind that he didn't miss me. If my mom died all my siblings, me, my dad, her grandbabies, and her animals would all be devastated. I would go so far as to say that some of them would take years to recover, if they recovered at all. It's the same with Chris' mom. Everyone in her life is so in love with her that the thought of losing her is something that no one around her wants to talk, or even think, about. I don't know what it's like for a 3-year-old to lose a mom, but I do know that Lily would remember me and miss me and have those hard moments in her life, and James wouldn't.
Grandma Grawe (my mom) reading to
James
Grandma Robin and Lily
(this is Chris' mom)
James not missing me made me feeling less guilty for feeling like those 10 days were some of the best 10 days of my life. I scooped horse, cow, and goat poop, got kicked by a cow, built a goat birthing pen, vacuumed the lawn, helped move heavy bags of animal feed, milked a cow and some goats, helped de-horn a goat, almost got eaten by a horse, held a watermelon piglet (half pig-half wild hog), helped treat bloat in a cow (twice), and so many other things that let me get dirty and forget it all (except for the texts, phone calls, and e-mails about therapy stuff). It was wonderful, and I can't wait to go back. I'd go today if I could (and I'm pretty sure Lily feels the same way).
What I hate the most is the angry/sad part of me that was thinking (and I was excited), "I wonder if he's going to cry and hug me so tight it hurts and smile and laugh and jump up and down when he sees me." I was wrong. I should have known better. I think I was thinking those things because I was hoping for some sort of validation, some sort of reward, for all the hard work we've been putting in and have put in so far. I was wrong, but now I know how high to make my expectations. And someday, when he sees me and screams in delight, it'll be that much better.
My favorite picture from Texas-
Lily protecting her potty seat from Bud and Eli
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.
For those of you who would like to donate to help out, there are donation links on the right side of the blog.
There are so many signs and symptoms of autism, it's one of those things that you ask yourself if you’re looking for symptoms, or, in our case, not looking for symptoms.
We blamed a lot of James' symptoms on him being a preemie and being a twin. He was born 5 weeks early but they say to add 2 weeks to that for twins. There's something that happens to you in the NICU that only other NICU moms understand. One of the most horrible feelings is seeing your baby turn one month old in the hospital and wonder if it was your fault that they were still there. That maybe they're still there because by the time I hit 35 weeks I literally could not breathe and I wanted them out. I regret thinking that every day. I think feeling those things are something that motivated me to use the preemie card, that card was so much easier.
Loving on Daddy when he got home from work
Here's why we didn't think James had autism.
Autism Sign: Lack of Affection
James doesn't lack affection, he has an abundance of it. James has spontaneous affection. Lack of spontaneous affection is one of the most noticeable signs of autism. But with James, if you're holding him he'll hug you and kiss you out of nowhere. Sometimes when he's walking by you he'll stop and grab your face and kiss you. When we're snuggling on the couch he'll turn and look at me and kiss me.
So James doesn't have autism because he loves on us.
Autism Sign: Lack of Range of Emotions
Nowadays the range of James' emotions pretty much goes from happy/content to pissed. But back then, back then being around 2 years ago, you could get James to babble at you and get him to smile. And his laugh. I don't think I can put the sound of James' laughter into words. James could throw a tantrum so wild you yourself start to cry because you can't help and then 30 minutes later when he's calmed down you can make him laugh and you fall right back in love with him. I've warned some people that once they hear James' laugh they will fall in love. It's gotten harder to get that belly laugh but it really is one of the greatest things ever, as you can see in this video.
Plus, I've said it before, the empathy he has for Lily. It's the best if she's upset and crying and then he starts to cry, or vice-versa, and their cries are in harmony, so funny. When they were apart and saw each other again you knew they missed each other from the smiles on their faces.
There you go, James doesn't have autism because he has lots of emotions.
Autism Sign: No Separation Anxiety from Parents
Kisses (and soda) from Mommy
James was so attached to me sometimes I would worry. Eventually it got so that when he got separated from me he would calm down if he knew (or thought) that I was gone. But if he knew that I was in the basement while he was upstairs it was the end of the world.
James doesn't have autism because he hates being away from me.
Autism Sign: Inability to Handle Change to Routine
I said that James hated having his schedule changed because I was so strict with the schedule the first year of their life. You know, feed your twins at the same time, have your twins sleep at the same, stuff like that.
So James doesn't have autism because his routine issues were my fault because I'm anal like that, and it was the only way I could survive.
Autism Sign: Sensory Issues
Preemie James
We said James had such trouble eating because his "suck" muscles for the "suck and swallow" instinct weren't very strong. Him and Lily turned out to have extreme acid reflux and so we blamed that first year of bad eating on acid not because he hated the way things felt in his mouth. Then when James did eat he only ate certain foods because he was picky, and maybe he had sensory issues because he was a preemie. He and Lily both hated fluorescent lights. That was completely blamed on the NICU because they spent their first 5 weeks of life in low light. All of those reasons could be true, or some of them, or autism could have caused all of his eating problems.
But those are reasons why we ruled autism out.
Autism Sign: Delays in Motor Skills
James didn't roll over or sit up or walk or hit other physical milestones because his head was "too heavy" for him to want to pick up (97th percentile for his age). There were also 8 tall people in the house who could pick him up and carry him and they all wanted to because there hadn't been a baby around for 12 years.
Seeing Daddy after 10 days of being apart
So James is lazy and spoiled so he doesn't have autism (here you need to remember that I'm a very sarcastic person, but I did tell myself those things).
Autism Sign: Delay and Loss of Speech
James' first word was when he was about 12 months old and it was "dog". It was Lily's first word and they said it within a couple days of each other and there's nothing wrong with Lily, so it's ok if it was a couple months late. And it was ok that James "lost words" because every time he would lose one he would gain one. Plus Lily never shut up, I mean, never stopped telling us stories.
James didn't have autism because he was gaining new language and just had a bad memory when it came to remembering the old stuff.
Autism Sign: Lack of Social Interaction, Doesn't Respond to Name
James wasn't social because Lily is SO social. She got so excited when people walked in a room, it was easy not to notice him. She wanted attention and to be held. James was content to stay where he was and when you got excited to see him it was pretty discouraging because he wouldn't even look at you. One of James' uncles is deaf in one ear so we blamed his non-responsiveness on possible hearing problems. We got a basic hearing test done and it showed his hearing as normal but they told us that those results aren't necessarily reliable because he was so young.
Somebody (probably himself) put baby in a corner
James didn't have autism because he wasn't social, he wasn't social because he had Lily to be social for him. And James didn't answer to you because he couldn't hear you not because he had autism.
And then there were obvious things. James' tantrums were wild and long. He didn't point which made it even harder to try and appease him. He was OBSESSED with the credits at the end of TV shows and movies. I personally just kinda figured that just how James was but his grandma's, maternal a pediatrician and paternal who had very close experience with autism, noticed these things and kept track.
I feel kinda stupid because you'd think, 1 in 88 kids (1 in 54 boys) have autism, and it's in James' family history… I also figured that my life was such hell at the time because raising twins was hell and that's just how it was. Oh yeah, he has red hair so we blamed his temper on that. When I was little I sure had attitude and I know my hair got blamed a lot.
And the other thing, James is wicked smart. When got him evaluated last August, so basically 2 1/5 years-old, James knew how to count to 12 and count down from 12. He knew his shapes and could identify them. He could draw a circle and a recognizable triangle. Not to mention he was on level 21 of Angry Birds, and there was more than one level with three stars. Most annoying, he knew that if we weren't at home my phone could access Netflix and his iPod touch couldn't and the little snot knew how to turn off airplane mode so he could watch things (and call people, grr) (we deleted the Netflix app). I thought it was cool that he was so smart, not worrisome. In James' diagnosis, a ten page packet that details the reasons why the doctor believes that James has autism and why it is autism and not an Autism Spectrum Disorder, the diagnosing doctor says "intelligent verging on the precocious." That doesn't sound too bad. I'm just glad James isn't some kind of savant cause when that kid learns to talk...
Looking at Mommy's phone
The moral of the story is: if you were to ask me when I started to wonder if James had autism, I really don't think I did. And I also don't think I worried what would happen if James did have autism because I knew we would do ABA just like our close family member had done and James would be fine. Now I don't worry that he'll be fine, I worry that if he's not fine it's because I couldn't give him 40 hours of ABA a week because I couldn't afford it because I didn't work hard enough or fight hard enough.
Then I think about all those mommies out there who don't know about ABA and have to see what I was seeing, my child slowly disappearing into a world within himself and when he came out he was jerked out, he hated it and I didn't want to do that to him so I just had to watch.
Holding hands
And what's worse? In James' case Lily has to watch it too. She has spent more time with him than anyone in the world. Last time I wrote about how he and I have to say goodbye but she does too. I took me about four tries to get through this: Letter to My Neurotypical Child. I hope I never have to say these words to her.
We've been working on James sitting at the table to eat, and it's been a fight. You bring him to the table by saying, "It's time to eat." There are a lot of different responses you can expect from James and on this particular night it was not a good response. But with ABA you're teaching the child to behave the way that their peers do, even if it means using all your strength to keep James in your lap to keep him at the table. It's pretty hard, but this one night, I had to hold Lily in her chair to keep her from going to him.
You get used to holding James down, but I will never get used to stopping Lily from comforting him.
I say "Goodbye" to my little boy three times a day. Six if you count the times I say goodbye to him after his ten minute break during his ABA therapy session. Some days it's less, like on Sundays when he doesn't have therapy or the days that he has two 3-hour sessions instead of three 2-hour sessions.
James getting into trouble in the bathroom
(Lily took this picture from the toilet)
I'll admit it, some days I don't mind it. In fact, there are some days when his therapist comes out to get him and I'm relieved. We've been potty training Lily and he gets into everything in the bathroom, and we have to keep the baby lock on the bathroom door so he doesn't get in there. Poor Lily has had some accidents because she can't get into the bathroom.
But there are some days, lots of days, when it's the hardest thing in the world. Today was one of those days. James' sessions are normally 50 minutes of work, then a 10 minute break and another 50 minutes of work. I always try to be around and there for him on those breaks. Or try to have someone there for him.
Today I had already put Lily down for her nap when James came out on his break. He was coloring WITH me (James still has a hard time with companion play). He was using a blue colored pencil and was coloring a car on one page while I was coloring a dog on the other page.
When the break is over we usually say "It's time to go back to work. Say 'bye bye.' Say 'bye bye Lily,' say 'bye bye Mommy.'" Today, when we said, "It's time to go back to work," James said, WITHOUT prompting, "Bye, I love you mommy."
He said "I love you Mommy."
He said it without being prompted or hearing someone else say it first.
He chained 5 words. FIVE words. Four months ago, my little boy could barely say 5 words. Now he can say five words in a row without stopping.
James has said "I love you" before but always after hearing it first. His longest chain before this was four words, "Turn on the TV" (which of course we did because he said FOUR words in a row).
But he also said "Bye." I have to say goodbye to my little boy 3-6 times a day but he has to say it to me too.
Oct 2010
After his midday session I always put him in his crib for a 'nap' which usually ends up being 'quiet time' for him cause he never really naps. I used to keep him with me and we'd sit on the couch and watch Shrek or something like that but we found that his evening shift went better if he had his quiet time. I have trouble checking on him at night because I just want to pick him up and bring him into bed with me but then Chris and I wouldn't get any sleep because we'd be too busy worrying that he'd fall off the bed. And if I brought James I'd want to bring Lily too and that girl never stops moving.
I tell myself that after these 3 years of therapy that me and Chris will make up the time we missed spending with him and it'll be even better because James will know what spending time with his mommy and daddy means.
And Lily. Those two little ones love each other and miss each other everyday. Maybe writing this will remind me to let them stay up late some nights watching a movie together or playing Phase 10.
Caught you!!
Lily trying to break into the Therapy Room to see
James
Hopefully all of that will happen. James won a "lottery" for a pilot program, the "Utah Autism Waiver" which provides about $30,000 a year for ABA therapy (http://health.utah.gov/autismwaiver/). It sounded too good to be true. It was. It turns out that if you accept the waiver you can have only the up to 15 hours of ABA that the state pays for, and can't supplement other needed therapy hours out of your own pocket. Parents have to choose between 5, 10, and 15 hours of ABA therapy per week. There are lots of assessments, and hopefully in the end they will be able to show the legislature how much better the kids who received 15 hours are doing. If we paid for James to have the other 25 hours that he needs it would throw off the results. And every kid that needs ABA should be able to get it. There is no way that James will be able to continue to learn and maintain the things that he has already learned with only 15 hours of therapy a week. He already started a year after the recommended starting age and has a lot of compliance issues that we are trying to work through. We have chosen not to participate in the waiver program, so we are back to looking everywhere for ways to pay for his therapy.
But you know what, this means that some other little kid will have the opportunity to learn. There is another mom out there who might be able to hear her child call her "Mommy," something that she has been waiting so long to hear.
James with his two favorite therapists on his 3rd birthday
It was nice to not think about having to move for a month. Maybe we won't have to in the end (though I am cursed with "Grawe Luck" which is bad luck (my maiden name is Grawe)). I wish that my son's future didn't depend on money. I wish I could pay my therapists more or be able to give them benefits so that James didn't have to lose someone special and then have a new one come into his life every month.
I remember one day, before James' diagnosis, when I was sitting at the computer and Lily kept saying, "Mommy, mommy, mommy, mommy" over and over and I wondered if James would ever do that. I remember telling Christopher when we started ABA that I hoped there was a day when James would do that. "Bye, I love you mommy" isn't the same thing, but for right now it works.
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).
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.
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.
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