Monday, May 25, 2009

Smoke and mirrors....

Special thanks and shout out to Andy and Leigh Gibbs for teaching me how to make my blog look good! =)

Sometimes, I'm just in the mood for a little JT. OK in reality, I'm ALWAYS in the mood for some JT. But today, I need to get my "sexy back" or in this case, my "A" game.

The thing about being a parent is that you need to have your "A" game on at all times. *Sigh* (I sigh a lot in my blogs, don't I?) I mean you never get a day off or a moment off or a minute to yourself ever again. Suddenly everyone is watching YOU waiting to see how YOU will react. Which is really fun when all you want to do is scream, or cry, or sob, or break down. But, you don't get to do that. Because if Mommy loses it, then EVERYONE is going to lose it, which............

only makes it WORSE for Mommy.

And the last thing we ever want to do, is make things worse for Mommy.

So Mommy puts on a brave face and smiles, even though sometimes she wants to die inside.

Sometimes I think this is the single hardest part about being a parent. Because we all know that suddenly we lose our identities to our children. You give birth, and from that moment forward you are known as, "Jared's Mom," or "Luke's Mom," and "April Schmidt" ceases to exist. Suddenly everything you do, everything you live for, every decision you make, every smile you fake, is for your kids.

And that's OK. Most of the time.

DO NOT misunderstand, 99% of the time, my smiles are real. I am one of those people who genuinely loves and ENJOYS my children. There is no place I would rather be than with them. However, there are days when you just wake up in a damn funk and you want to sit and pout about it. But I don't have that option. On the few occasions I have "lost it" in front of my kids, I can see the look on their faces, "Oh.MY.God. The Apocalypse is near!" and I scramble to make things right really fast.

Today is one of those days where the laundry is piled up to the ceiling, the entire house needs vacuuming, the flowers need watering, the garden needs weeding, the backpacks need to be emptied (I mean, school has been out for almost 5 days now), dinner needs cooking, bathrooms need bleaching, husbands need _______, floors need mopping, kids need loving, toenails need painting, camps need scheduling, parents need calling, etc etc etc etc etc etc. All of this and I woke up in a funk.

It's almost like being an actor, ALL THE TIME. No matter what phone call you just got, "You owe the IRS $10,000." you have to hang up the phone and put on that brave face for your kids. How about being in the checkout line at Target and one kid is screaming, the cell phone is ringing (and you can't find it), it's time to pay (can't find your debit card either), and the other one has just pooped and it actually fell OUT of his diaper and it is sitting in a neat pile on the floor.... your body tempurature just went up about 200 degrees and you're quite certain you have those really gross wet pit stains on your shirt and YOU have to pee yourself so you're really uncomfortable......... smile! How are you going to make this a "teaching moment?"

ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha

By the way, that target thing? It's a true story. Swear.

The thing is, those little eyes are on you ALL THE TIME and how we respond and react to everything~ the big things and sometimes, more importantly, the small things really does teach our children a lifetime of lessons.

In short, this is WHY being a mom is the hardest job you'll ever love.

And, it is the MOST important job you'll ever have.

Because one way or another, we find a way to pull it off. Every.single.time.

Well, almost.

Wednesday, May 20, 2009

One moment in time...

And yes, I have Whitney Houston playing on my blog. Because I'm cheeky that way. No really, it's a joke.

So much can change in the course of one day.

Even one moment.

Today my bestest friend got on offer for representation. I’m not sure if that’s the right terminology but I do know that’s a really big deal. This is Myra’s dream coming true. She quit her job and everything she was doing and said, “that’s it, I’m going to write a book.” And write she did. Today that dream became a reality. I’m so thankful I got to be a part of this journey with her, one of the lucky few she let read even the really ugly early copies (according to her, not me, I always loved it). And today I got to be there when she got the news. It was a great moment. One that I will never forget. Funny how life can change so fast. Yesterday she was “someone who wrote a book,” and today is she is a breath away from, “author.”

When I was pregnant with both of my boys, my biggest fear was coming home from the hospital without a baby. I never gave much thought to things that could go wrong LATER. Especially as a first time mom my primary focus was getting the baby OUT and getting the baby HOME. So you bring home your little bundle of joy and the fun begins. Every little tiny breath your baby makes is the most exciting thing in your life. Every time your baby looks at you, laughs at you…the first smile…first step, first words, and so on.

But what if your baby never actually does any of those things? I mean, he looks fine from the outside. The doctor is telling you everything is ok and he’s a doctor so he has to be right, right? But why in your heart of hearts and gut of guts do you just know something is off? I mean you made it to one year and the baby is still breathing so that’s a good sign you’ve done something right? Isn’t it?

Here comes one of those moments.

I’ll never forget this as long as I live. As I think about it, it’s like I’m transported right back. As if in a movie, when the camera zooms way in really fast and zeroes in on the main character’s face ~ that’s me. Luke is about 16 months old….one night Jeff and I are sitting at the dining room table. He’s working on his laptop, I’m thumbing through a magazine. I stop at one of those “Dear Dr.” articles and start to read… “Dear Doctor, one of my friends suggested that my son has autism! I don’t know what to do!” And “Dear Doctor” writes back, “if you can answer yes to 3 of these 10 questions, then your child may have autism and you should see your health care professional immediately.”

I answered yes to all ten questions.

Does your child fail to respond to his or her name? Does your child avoid making eye contact with you? Does your child appear not to hear you? Does your child avoid being held or cuddled? Does your child seem to be unaware of others' feeling or emotions and prefer to play alone? Does your child perform repetitive movements, such as rocking? Does your child become bothered with small changes in their routine? Does your child appear to be unusually sensitive to their environment through light, sound and touch? Has your child developed specific routines that are easily identified? Does your child point to desired objects?

All of a sudden, our dreams changed.

I cried when they diagnosed Luke with “ECDD” (code for “we know something is wrong, we just don’t know what), But what needs to be understood is that I never, ever cried for me. I cried for him. I cried because I didn’t want life to be even harder than it already is for him. I cried because I thought, “He’ll never lead a normal life.” (ha ha) So I started to dream that Luke could have those things. I started to dream and fight for ways that we could actually make life easier for him. Now, instead of dreaming your child will someday go to Harvard or become a doctor, you dream that your child will speak. You dream that your child will look at you. “I’m his mother for f$%k’s sake, why doesn’t the child even LOOK AT ME?” (I actually said to the pediatrician at some point: I have the general feeling that Luke doesn’t care whether *I* live or die, as long as someone brings him a bottle.) Suddenly you dream that your child will be able to point at a desired object….when up until that moment you didn’t even realize that was something you SHOULD care about.

Suddenly, the really LITTLE things became big dreams.

Today was Luke’s last day of preschool. He spent 2 years at the early childhood program at Longview Elementary. I could write 100 pages about how much I love those women. He has one “teacher” (they are all teachers!), 2 aides, a speech pathologist, and an occupational therapist. Every single one of those women are like his mom away from mom. I owe them my life, they gave me my son back. Enough with the crying already!

My point is…. Today my dream came true, too. Today Luke accomplished a really huge goal. 3 years ago Luke’s therapist in Michigan told me that I was making a HUGE mistake sending Luke to school. That Luke would get “lost in the shuffle,” that he would end up in a corner playing alone. That we would lose all of the progress we had made up until that point. But sometimes, when you are reaching for a dream, you need to take a risk. You need to put yourself out there and take a chance. And we took a chance. We believed in Luke and he more than rose to the occasion. Even one year ago I would have NEVER said that Luke would be ready for kindergarten at this point. But guess what? He’s ready. What a difference a year can make. A day can make… a moment.

Does your child fail to respond to his or her name? NO! Does your child avoid making eye contact with you? NO, NO, NO! Does your child appear not to hear you? NO! Does your child avoid being held or cuddled? Not by me! Does your child seem to be unaware of others' feeling or emotions and prefer to play alone? Not on your life!!! Does your child perform repetitive movements, such as rocking? Nope! Does your child become bothered with small changes in their routine? Sometimes Does your child appear to be unusually sensitive to their environment through light, sound and touch? Once in awhile but we know how to manage it now (popcorn and icee = trip to target!) Has your child developed specific routines that are easily identified? Yep, and I have some too! Does your child point to desired objects? Please, that’s so 3 years ago!

Being at Luke’s party today, watching him play and interact and converse and look people in the eye and point and initiate and engage….. is truly a moment I will never ever forget. A life changing moment.

Phew! What a big day we ALL had! Congratulations Myra McEntire for taking a risk and achieving the dream. And kudos to you, Mr. Luke Schmidt ~ you're on your way!

Your dreams come true when you act to turn them into realities. Anonymous

Thursday, May 14, 2009

Stand By Me

Author’s note: I know, I know my other background was way cute but it took awhile to load and was sorta….busy.

I’ve been trying to make my blog somewhat witty, all the time “me,” and mostly, interesting to read. But when it’s 4:30 in the morning and I have a headache, it might just be ranting.

I think that was my idea of fair warning.

I can’t stop thinking of this woman I spoke with the other day, you know the one from my last post who wanted her son to hang with “normal” kids? Well, that was when the conversation started to get really interesting.

Disclaimer: names have been changed to protect the innocent. Or, not so innocent.

We’ll call the mom Susan and her son Billy for the sake of the story, OK?

I do a ton of work with Autism Speaks, mostly for the Walk Now for Autism. So, I was making phone calls to previous team members and trying to bring them back into the fold for this year. (I felt I needed to explain why I was even calling random people I don’t know) So I call Susan and she proceeds to vent a lot of stuff to me, and that’s fine. But then she goes into the whole story about how Billy is on the road to recovery and almost off the spectrum. Wow, that’s fabulous news! Then she makes the whole “normal” comment and and this point I’m trying to get off the phone asap.

Then the conversation turned. Again. I’m explaining to Susan that Autism Speaks does a lot of local work, that we bring resources in to communities, host family fun “Autism Safe” events, etc etc blah blah blah. And then she starts.

She starts to tell me that SHE doesn’t NEED that kind of support. Because, you know, Billy is almost recovered and all. “I don’t really want to hang out with other mothers whose children have moderate to severe autism, I can’t relate to that anymore.”

But wait!

“I feel like if I take Billy to these events where there are other children like this, I’m somehow rubbing it in their mother’s faces, making them feel worse about their situation because Billy is doing SO WELL. I know many families who do twice as much work as what we do with Billy and they are getting nowhere. I think I would actually feel bad, flaunting Billy around them.”

Insert stunned silence here.

“Thank you so very much for your time, I certainly respect your opinion and will take you off of our call list.”


I’m going to tell you a dirty little secret ~ Luke is almost recovered too. In fact, I’ve had a few professionals tell me that they don’t think he has autism (another post for sure). Granted, that’s really easy to assess in a 15 minute window, (ha ha ha) but mama knows better. TRUST me, mama knows better. It ain’t over. It’s far from over! But I do realize that I am TRULY one of the lucky ones. Luke does VERY well. He’s verbal, he’s potty trained, and he’s pretty darn social. He doesn’t stim, he doesn’t spin wheels all day, he doesn’t bang his head against a wall. But he also doesn’t eat. And he doesn’t like transition. And he doesn’t answer questions very well. And he doesn’t “converse” like a 5 year old should. Etc etc etc. But at the end of the day, I know I am one of the lucky ones.

But it wasn’t always that way.

At 18 months old my son wouldn’t look at me. Did you hear me? My son would not look at me. Or his dad, or his brother….. eye contact people, it’s about the most basic form of communication. He wouldn’t do it.

He couldn’t pull a toy behind him. Did you year me? My son. Could not. Pull a toy. Behind him. For the record, I never would have thought this was a “testing point” or something he needed to be doing and we didn’t OWN any pull toys for him to be practicing on ~ however, he lacked the cognitive skill to pick up the string and know what to do with it.

For TWO. FULL. YEARS. I could not, WOULD NOT leave the house with Luke. REALLY. No grocery shopping, no trips to target, trying to avoid at all costs any and all outings that Luke had to attend. I mean really re-arranging my whole life so that Luke didn’t have to leave the house.

Really, I could go on for hours with this.

My point is this. I work tirelessly to raise awareness about autism. Really, I do. The work I do with Autism Speaks is a full time job. I founded a support group in my town. I write this blog. I make puzzle piece t-shirts and shoes and jewelry and note cards. I can’t stop. I cannot, WILL NOT rest until I know I have done everything in my power to spread the word, share, listen, hopefully throw in a laugh, and just….. be there.

Because what Susan doesn’t realize is that even though SHE doesn’t need those other mothers, they need her.


Monday, May 11, 2009

Normal is as normal does

The subject of "normal" has been coming up a lot in my life lately. Someone said to me awhile ago, "I'm really thankful that my kids are normal." Hmmmm. Doesn't take much to get my feathers ruffled but ...*sigh.* That's the mama bear in me. Today a woman with an autistic son on the road to recovery said to me, "I don't want Billy hanging around other children that aren't normal. He needs to see kids who are acting normal so he knows how to behave."

This is a family blog people. I can't even tell you what I was thinking after that one.

Then a few days ago, Jared asked me, "Mom, do you consider yourself normal?"

(Insert insane amounts of laughter here)

We proceeded to have a conversation about what "normal" means. He was referring to the fact that he wasn't "normal" because he was born with a congenital heart defect. And Luke isn't "normal" because he has autism. And Daddy isn't "normal" because he's REALLY smart and graduated with more than a 4.0. So, in Jared's logic, I'm the only, "normal" one in the family.

Again with the laughter!

I then reminded Jared that I had surgery on my bladder 9 times in 4 years and how in God's name is that normal?

"Oh yeah," he conceded. "You're not normal either!"

Phew! That was a close one.

"Well mom, what is normal then?"

Honestly, I think the sex question would have been easier to answer.

So we had a conversation about what normal means and at the end of it we came to the conclusion that normal is in the eye of the beholder. And what's normal to you may not be normal to me and really, "normal" is kind of a stupid word.

Anyone who has met me knows that I'm not all about "PC" terms but I gotta admit, I like when Luke is compared to "typically developing peers" rather than, "normal kids." Luke is compared to what kids his age are typically acting like, talking like, writing like, learning like. Rather than what "normal" kids are doing. I mean, can I get an AMEN to whoever figured that one out?

If "normal" means that at 5 years old Luke should have the "typical" language of a 5 year old and NOT a 3 year old, well, I'm ok with that. Because he has language at all.

If "normal" means that Luke should be able to go to school without needing an aide or supports, well that's OK. We pay taxes for a reason.

If "normal" means that Luke should be the same kid all day every day, day in and day out and never freak out when today something is his favorite and tomorrow it's so not, that's OK, we'll figure it out. It's a puzzle for crying out loud.

If "normal" means that Luke shouldn't be screaming when it's time to get shoes on and get in the car to go run be it. I'll still take it. 2 years ago I couldn't leave the house with Luke at all.

If "normal" means that Luke can't say "please" and "thank you" every single time he has a request, then I don't want Luke to be normal. Because guess what? He does. Granted, he might be screaming, but by golly the pleases and the thank yous are in there.

If "normal" means that Luke can't say, "I'm so happy you're back" when I come home from work, then PLEASE keep your label.

If "normal" means that Luke can't laugh so hard I worry he'll stop breathing when he's jumping on the bed with Jared on Mother's Day morning, then by all means, we'll stay, "not normal."

Here's my favorite: If being "normal" means that Luke has to stop saying, "I'm going to get your booty!!!!!!!" and then chasing Jared around in a fit of laughter, I mean I need to say it again?

What's normal to you and what's normal to me are very different things. Normal to me means that I never know what I'm going to get with Luke from one moment to the next. That's my normal and that's my reality. And I'm ok with it. I won't deny it took me awhile to become OK with it, but I am. Because he's my normal and I wouldn't have him any other way.

At the end of the day, it's just a word. Attach whatever meaning you'd like to it. But please don't compare my son to your "normal" son because I'm SO sure our definitions are very different.

And for the record.......with or without bladder surgery, I am soooooooo far from anybody's definition of normal.


Thursday, May 7, 2009

Good 'Nuf


Jenny Mc Carthy just signed a “big deal” with Oprah. A radio show, a tv show, her own line of dog food, a perfume, etc. Ok I’m kidding. Sort of.

I struggle with how I feel about all of this. As I’ve mentioned before, I give Jenny Mc all of the props in the world. She’s used her celebrity to bring autism to the forefront of the media. I can honestly say that Jenny is single-handedly responsible for waking up the eyes of millions of people to what is going on with autism. She put her balls out there ~ she took a huge risk in pissing people off with her anti/green-vaccine campaign. (How I feel about vaccines is a whole ‘nother post my friends)

I read Jenny’s first book on the recommendation of so many. I finished and was still hungry. As Simon Cowell so aptly said on AI this week, “it’s like having ice for lunch, you haven’t REALLY eaten anything.” Jenny talked about Evan and his struggles, but more in a “day of the life” type of deal. Kind of like……a blog. I didn’t actually gain anything from the book other than, “OK she’s been through it too.” What I did walk away thinking was that even though she claims to have re-mortgaged her house to pay for Evan’s expensive therapies ~ the bottom line is, she’s Jenny Mc Carthy and that name alone opens up a lot more doors than the name April Schmidt.

I recently read that Jenny built a classroom in her home so that Evan doesn’t have to ever really leave and take the risk of getting sick.

Now that’s realistic!

By the time her second book came out, which I did buy and never finished reading……Jenny seemed to fancy herself the expert on all things autism. The more articles I read of hers and the more interviews I saw the more I disliked Jenny. And here’s why.

Whether or not you are Jenny Mc Carthy or Angelina Jolie or Barack Obama or April Schmidt, you do the best you can. You do the best you can with the resources you have. If those resources only allow you to get your child 4 hours of ABA therapy a week or for that matter 1, you’re doing the best you can. The thing about Jenny is that she gets on her soap box and really gets quite um, “animated” when talking about the issues of vaccines and what not and tends to think her way is not just the best way, but the only way.

Jenny goes on and on about how Evan is “recovered.” And I believe her that he is. She doesn’t by any stretch try to pretend that their journey is over… HOWEVER ~ I can’t help but think that if Luke were able to get 40 hours of therapy per week, a nutritionist, a chef and a live in nanny he’d be fully “recovered” too.

But the REALITY is that I can’t give Luke those things. The Schmidts can’t afford 40 hours of ABA per week. I took on a part time job just so that we could afford 4. I won’t even start on the money we’ve spent on the GF/CF diet and all the supplements that go with it. I can’t built Luke a classroom in our house and so (perish the thought!) Luke goes to a public school where not only has he developed some amazing social and language skills, but he’s picked up (egads!) germs now and again, causing him to get sick (see previous post) and lose precious learning time. Sometimes I even (please don’t call the police) let Luke sit in front of the TV so that I can do crazy things like laundry, cooking, showering, or God forbid, spending time with my other child.

I’m not so sure Luke is really suffering.

My point is, we do the best we can with what we have. Is it good enough? I wonder all day every day if it is. I constantly ask myself if there’s more I can be doing, therapies I can try, more hours to give. And if I were able to, would it make a difference for Luke? Would I be able to call him “cured?”

Doesn’t matter. Because what I’m doing is ALL I can do. I can’t beat myself for not being Jenny Mc Carthy. What I have to offer has to be good enough because it’s all that I have to give.

And really? At the end of the day Jenny Mc Carthy is just a playboy bunny. And someone who used to get paid to make smart ass comments on MTV. And now she gets paid to talk about autism. Good for her. I think. I mean at least someone is talking about it, right? I guess you could say that’s….

Good enough.

Saturday, May 2, 2009

Welcome to the puzzle

For someone who never liked blogging to begin with, I find myself thinking about this blog and what I'm going to say next quite a bit more than I should. The problem is, I have SO MUCH to say on the topic of autism and our journey with it, that I could write a book. And it would be better than Jenny Mc Carthy's. Except she has those boobs that really help her market her, um....wares. But I digress, as usual. And don't get me wrong, I give Jenny Mc all the props in the world for bringing autism to the forefront of the media. I just don't like her books.

So I think today's topic will be just shaving a sliver of ice off the berg that is ~ feeling helpless when it comes to your child. ESPECIALLY but not limited to, your special needs child.

Just over a month ago, Luke was in the hospital with some WICKED flu. He could not even keep a tablespoon of water down. Until this time, Luke had never even thrown up in his life. So again, probably not something the typical parent gives a lot of thought to: "how will my child respond to the sheer act of throwing up?" "How can I even communicate the importance of my child trying to drink something?" "How will he tell me what's hurting?" But alas these are all thoughts we were facing. He cried when he threw up, and generally seemed really confused by what was going on. He refused to drink anything (more on that later) and all he would say is, "Ouchy boo boo" which was enough for me to know that if it hurt ANYWHERE, we needed to get it taken care of.

By day 3 of our flu adventure, Luke was walking around with a washcloth in his mouth and refused to speak or release the washcloth for any reason. Took me 2 more days to figure out why.

At about 2am on Wednesday morning of that week, I could not get Luke to stay conscious for anything. He had already been sleeping for 18 hours and I was freaked out. So after the hullaballoo and drama of getting Jared to Myra's house at 3am, I drove Luke to the closest hospital, which, for the record was NOT Vanderbilt. And don't forget, in all of this I had to pack a bag with every possible thing that Luke would ever want to eat/drink and any comfort item which might even potentially make him feel better. With a bag heavier than Luke (I'm not kidding), off we went.

Although everyone was extremely friendly, they were NOT helpful. Because Luke has autism, they didn't want to put an IV in his arm to get him rehydrated. I SWEAR. When the doctor left the room, the nurse very kindly explained to me that this (smaller) hospital was just not equipped to deal with special needs circumstances. Um, WHAT? That my friends, is a blog in and of itself. Maybe several posts, I'm not sure. They convinced me that he was "borderline" dehydrated, not quite close enough they felt they needed to force this issue (chickens!) and sent me home with phenergan suppositories (anti-nausea). WAIT! They didn't send me home with SQUAT! They gave me a prescription and kindly informed me that the 24 hour Walgreens attached to the hospital was no longer, "24." Keep in mind it's 5am. Now I get to drag my sick child BACK out later to get this thing filled. And then attempt to stick it in his butt.


To speed up the story, by Friday morning we were at Vanderbilt where Luke was admitted IMMEDIALEY for "severe dehydration" and promptly given multiple bags of IV fluid, antibiotics, anti-nausea drugs, and....morphine. By the time they checked his throat it was completely covered in white pus filled bumps (ewwwwwwwwww) and was starting to bleed. Back to the washcloth ~ the poor kid didn't want to swallow and he used the washcloth the aborb the saliva so he wouldn't have to. Now that's smart!

People ask me all the time: What is autism?
Autism is when your child can't or doesn't know or for some unknown reason doesn't want to communicate what's hurting him. Autism is when your child can't say "Mom, my throat hurts," and so he shoves a washcloth in his mouth and hopes that someone will eventually figure it out. Autism is when your child can't say, "I don't feel good," "I think I'm going to throw up," "My tummy hurts."

Autism is when you take your child to a hospital and they don't want to put an IV in him, even though it's what he really needs because they are afraid of how he will react.

Autism is when we thank God for hospitals like Vanderbilt Children's who not only didn't need any further explanation after "Luke has autism," but handled him with kid gloves from start to finish and made our time there as comfortable as possible. Autism is when you want to hug the nurses for understanding without saying a word.

So, I think we've covered the hopelessness issue right? Well when we returned from the hospital and Luke was once again jumping on the trampoline, I booked us a trip to Atlanta. Luke LOVES fish and we had been talking for awhile about taking the kids to the aquarium. So by golly, if I can't make you feel better when you REALLY need me to, then I'm going to make you happy when you already feel fine by taking you someplace really fun and cool. No really, that's the logic. It's kind of like feeling guilty. It's helplessness that bleeds into guilt because you feel like somewhere deep down inside you should have been able to figure this all out by Tuesday and not make the child suffer until Friday. So out of this need to somehow make it all right, we ended up having a pretty cool mini-vacation.

The trip itself poses some challenges but this post is long enough.

I feel like Luke had a sufficient amount of fun that it will block out his crappy week of being sick and going to the hospital twice~ so in that way, I have helped.

Our lesson for today in "What is autism?" is this:
Autism is when your child can't say, "My throat hurts so bad I can't even swallow." But when he CAN say, "Let's toast to brown drink" at World of Coke on his "make it all better" trip.

Welcome to the puzzle.