It's not all autism. Lacrosse brings big smiles around here.

Fortunately my life isn't just about autism. As a matter of fact, there are days that I'm not sure autism even feels like a factor. How awesome is that? I have a few passions of my own that I've been able to make time for as the kids have gotten older. I love my yoga class; it puts me in that space to quiet my mind, stretch my muscles, and helps me to feel grateful for the healthy body that I have been given. I also prioritize massage trades twice a month; I love to give massages (I'm a licensed LMT) but I love to receive them even more!  My current not so secret passion, and the subject of todays blog post, is about my favorite sport: lacrosse. We spend many hours on the sidelines cheering on our guy. I've posted a picture too of his very patient sister, who has spent years watching him play soccer, football, wrestle and play basketball on top of his favorite sport lacrosse. She plugs in her iPod, listens to music in the shade, and is content. She's a champ.

   

Jack winning another face off. :)

Molly chillin' in the shade.


Here is my recent letter to the Editor that was posted in the local Cheyenne Edition before team tryouts in February. This was an effort to drum up a little local support for our boys this spring. 

I always thought that I’d marry a lacrosse player. I played girls’ lacrosse in high school and college. As a Virginia teenager—living in an all male prep school where my parents taught--- it was my opinion that the cutest and smartest boys were the lacrosse players. My attitude hasn’t changed much in 30 years, though I might be a little biased, since my son is currently a freshman on the Cheyenne Mountain lacrosse team. 

I have loved seeing migration from a primarily east coast sport in the private schools, to an explosion of interest across the country in the public schools as well. It’s the fastest growing sport in the US and now that we have a nationally ranked college level program at DU, as well as a professional team--the Outlaws--Colorado has become a hot bed of lacrosse excitement and opportunity. We are lucky locally to have both the Air Force Academy and Colorado College, with men’s lacrosse teams who extend themselves to our boys through camps and summer select teams.

If you have never attended a game, you must. It’s high action and fast paced--similar to hockey, but all the action is in the air, not on the ground. The sport originated with the Indians (Cheyenne Mountain Indians, perhaps?).  I’m not sure why the preppy elite took it as their own?             

The rules of lacrosse are relatively simple: Win the face off to start the game, don’t drop the passes from your team mates (easier said than done), and throw the tennis-ball-sized-rock-hard-rubber-ball past the goalie into the net. There are ten players on the field: goalie, three defensemen who are armed with six foot long lacrosse sticks, three midfielders (middies) with regular three and one-half foot long sticks and three attack men, also with regular sticks. Defenders stay on their half of the field; attack have to stay on their half and the middies play both offense and defense. Everyone wears pads and helmets. You quickly learn who is who by the shape of their legs or the numbers on their jerseys.

Since school has resumed, the Cheyenne Mountain lacrosse team has been hard at work getting into shape before tryouts start and the season begins. The boys have been in the gym two days a week lifting weights and another two days either on the field or in the shed working on stick skills. Remember that catching and throwing thing? It’s still the top skill to practice and get good at both left handed and right handed. Being able to run for miles and miles without throwing up-- they are working on that,too. Have you ever heard of the Indian Run? They jog in a long line with everyone staying together at the same pace and once the last one sprints to the front of the line and keeps jogging, the guy at the end has to sprint to the front. They continue on this way for miles. No wonder my son eats constantly!  Tryouts are February 18/19 and the first game is March 7th. Come sit on the sidelines with me and we can try to figure out who’s who out on the field!

Did I end up marrying a “laxer” you might wonder? Nope, he’s a Colorado native, who had never even seen the sport before, who swept me off my feet. You should have seen him SKI!! 

Welcome to Holland....or Sarajevo in our case.

6" of fresh snow fell last night, so the boys of our family are off on another ski/snowboard adventure. Keystone is the lucky winner today. Molly and I are snuggled in car-less for the day. Mickey Mouse Clubhouse has her smiling as I settle into another blog post.

ABA therapy, IEP, VB-MAPP, gluten free diet, caseine free diet, vitamin B shots, detox foot baths, chiropractor, homeopath, muscle testing, 23 different supplements to take every 3 hours ( good luck finding a way to get them into your gag reflex prone child who won't swallow pills), neurologist ( who has no suggestions), hippo therapy, collect the pee (how?), now collect the poo ( easier), another blood draw (UGH!), cranial sacral, speech therapy, augmentive device, PECs, autism conferences , prompting, fading prompts, potent reinforcers, data, lots of data, environmental trigger, tantrum, LOTS of tantrums, what just happened to trigger the tantrum?, florescent lights flickering?, too noisy?, too many people?, itchy tag?, new location?, change of schedule?, no idea? ( often the case, especially once they hit puberty), think outside the box, vaccines, no vaccines, ear infections, thrush, excema, Temple Grandin, lots of books ( some give you hope, others not so much, mostly you get overwhelmed by what you need to try), other parents in the same boat, THANK YOU God for the other parents as they have the most information and they understand us without us having to find the words to describe what we are going through, and $, LOTS of $.

I realize that that paragraph probably has many terms that need explaining and I could probably write a novel on each concept. I actually feel an awe for my former self that had to deal with all of that. So I'm going to give myself a little hug for still being married and for coming out the other side still intact :)

I have shared this wonderful essay before and love it so much that I will share it here. It is written about parenting a child with special needs but I feel that it is relevant to any challenge that you have been graced with.



Welcome to Holland by Emily Perl Kingsley 1987

I am often asked to describe the experience of raising a child with a disability- to try and help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this.....

When you're going to have a baby, it's like planning a fabulous vacation trip- to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says "Welcome to Holland".

"Holland?!?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of  pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.....and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy.....and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away.....because the loss of that dream is a very significant loss.

But.....if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things.....about Holland.

Molly's BEST teacher of all time!

We have had a huge team of support who have rallied around us and Molly since her diagnosis. We give thanks to all of them as it has "taken a village" for sure. However, I believe that there has been one person who has been the most influential to her happiness as well as to her positive development. He makes her laugh, he teases her, he notices her subtle improvements, he imitates her to perfection which makes me laugh, he snuggles with her, and he has a soft spot for his sister that is beautiful to behold. Molly's BEST teacher (dare I say by far?) has been her brother Jack .

Being the second child, living with autism is all that he has ever known. Here is another of those moments frozen in time that I will never forget. We were visiting friends back in NC, who had kids the exact same ages as Molly and Jack, when Jack noticed for the first time that something was different. Eliza was Molly's age and chatting up a storm. Jack noticed this and said "Hey Mom, how come I'm 3 and can talk but Molly is 5 and she can't?" At this point, he had been around therapists who had come in and out of our home 30 hours a week for 2 straight years working with Molly and he hadn't gotten the picture. It took seeing another kid her age for him to realize that something was amiss. The wonder is that he didn't care and seemingly has never been embarrassed by it. He loves her and that is that.

Jack is her protector. One summer we were at the pool and the kids were on opposite ends swimming; one in the shallow end and the other in the deep end. I was not quite at my current fantasy stage sitting up on the hill reading a book. But I also wasn't actually IN the pool with Molly so both kids could swim on their own at this point. We have belonged to this neighborhood swim club since both kids were tiny. Through the years, you watch families migrate from the completely safe and enclosed baby pool, to the shallow end of the big pool, to diving off the diving board in the deep end, to finally becoming the mom up on the hill reading a book and not noticing what your kids are doing as there are lifeguards to take care of that. I remember looking up the hill at those moms with such envy. Now I AM that mom. Yippee! At the beginning of every summer, I spend the first week or so positioned near Molly as she swims around the pool. It's not that I fear that she will drown as she is a very adept swimmer, but Molly has the tendency to attach herself to other kids and hang out with them or awkwardly near them. She makes her odd not-sure-how-to-describe-her-noise. It's kind of a humming sound or a loud "Ahhhhhhhh". It's not so obvious in a little child...but it is VERY weird coming out of a 17 year old. Even the tiniest of tiny kids will stop and look at her. They aren't being critical or mean and you can see it on their face: "WTF?" they are thinking (if kids use that bad word?). So in my constant state of educating others, I will watch and gauge if these particular kids know Molly. If they say her name or aren't looking at her strangely or making funny gestures to each other about her...I leave them alone. If I have a sense that they have no idea who she is or why she is just hanging out with them but not talking to them, I call one over. "Do you know Molly? Well, it looks like she wants to get to know you. What is your name? Molly this is _. Molly doesn't talk with her mouth but she is a super sweet girl and just loves to be near other kids. Is it okay if she hangs out? If you need me to lure her away, just motion to me and I'll get her". Can I just say, that in my experience, 100% of the time kids are accepting and accommodating as soon as they understand. Kids are great.

So back to protector Jack. There was a boy in the shallow end that summer that was annoyed and offended by Molly's noises. She was hanging out near him but not with him. This boy started to splash Molly. He splashed water straight into her face and kept doing it. Before I could react, Jack came from the other side of the pool swimming as fast as he could to Molly. Does he keep one eye constantly on her and the other on his own fun? He must. He pulled Molly away from the boy and lured her to another section of the pool. I truthfully can't recall if he said anything to the boy but of course I did. I pulled him aside and explained about her autism. He felt badly and I can bet he never did it again. Can I just say that her grunting noise made ME crazy too and I can relate to that poor boys annoyance?

Jack is her teacher. There is no one better about breaking down a task into simple easy steps for her to learn. Her first words "Awesome. Cool" were brought out of her by him. "What does a cow say?" "OOOOO" happened on a road trip. He is patient. He is kind. He knows her little quirks and makes her laugh about them. Currently, we see her counting on her fingers a lot (5, 4, 3, 2, 1) (1, 2, 3, 4, 5). He now does it randomly too which makes me laugh but also makes me nervous, like she'll think that it's okay and keep doing it. What IS she counting?

Jack has benefited as a human being by having a sibling with autism. He is wise beyond his years in dealing with someone who can not stand up for themselves, who has challenges with daily tasks and activities, who is naive, and pure, and kind, and childlike. But he also gets his way in every instance. He picks the TV shows and she's okay with it. He picks where we will eat out. And she is okay with it. He picks the family activities and she is okay with it. He has not had to learn how to fight. He has not had to learn how to share.  Typical siblings teach you a lot in learning to navigate life and other people. Parents hate the fighting and loud negotiating and screaming and crying....but lessons are being learned in these interactions. In some instances, Jack is at a disadvantage from his peers. A roommate in college will be a good test for him :)

I had a caring friend who once said to me "You are SO lucky that you don't have to listen to your kids argue". She meant well and she was right, I WAS lucky not to have that annoyance. But you know what I was thinking? That I would GIVE ANYTHING to hear my kids fight.

Molly talking

It's our first day of Spring Break with not one plan on the books. Feels like everyone but us has left for an exotic, warm vacation and we are left homebound on this cold, overcast day. Lisette has given me a tutorial on how to upload pictures and movies so I am practicing that today. Who knows how many old family movies you will get to see? As many of my FB friends will recall, I videoed Molly about a year ago and was quite shocked by the outpouring of support and surprise from friends who had no idea how interactive she could be. Here it is again.

Singing the ABC's

Molly and Jack had covered themselves in paint and had moved to the tub to get clean. Jack (2 years old) is singing the ABC's. It is only as I watch this video now that I can hear Molly (4 years old) trying to sing it too. You will hear her typical "grunting" noise that used to make me crazy. Not sure when that particular language shifted, but I'm glad that it has. You will note in all of the early video footage that Jack is very engaging with us and Molly just runs around (or in this case sits) not really paying that much attention to the camera (or whomever is videoing). Jack, on the other hand, is ALL about seeing himself.

Jack was an Einstein

We thought Jack was such an Einstein and so advanced when he was talking in full sentences by 2 years old and easily potty trained by 2 1/2 (After a huge water balloon fight while family was visiting, Jack was highly motivated by them. I was not as they are hard to tie, but I used them to my advantage. "You get one water balloon if you pee pee on the potty and two balloons if you poo poo". That was all it took. He was trained.) He was easy going, had such a funny sense of humor and was so interactive from early on that we were finally learning through our second child what fun parenting was. Turns out that's how "typical" kids mature. When we juxtaposed his easy going ways with Molly, who was colicky, back into the doctor after every round of vaccines with a double ear infection and thrush, up all night with screaming fits, and didn't seem to care if we were around, we thought that he was a cinch to raise. She was so edgy and unpredictable that we literally never ate out with her as it just wasn't worth our Plan B life (which was to leave with food in To Go boxes or exit any venue for that matter). She wasn't a baby that could be soothed. For Jack, we just snuggled him, fed him or changed his diaper and he was back to being happy. We could try all of the above with her, and when nothing would work, Brooke would jiggle her up and down on his knee or put her on the dryer that had a similar movement, and only that would finally quiet her. She wasn't potty trained until 6 years old, and that huge effort took a long time and a team of ABA therapists to help us. Picture HOURS of liquids and potent reinforcers that were only given upon Molly's successes on the potty.


We didn't know it at the time, but Molly had some early oral defenses too. She refused a bottle, as well as a pacifier, and didn't suck her thumb either. No self soothing going on there. When she was old enough to hold a sippy cup, she wouldn't drink from that either, so I was the one and only person that could feed her. That sucked and tied me to the home. Husband, grandparents and the very rare babysitter were more than willing to try, but would end up with a screaming child that could only be soothed by me....so that was never fun for them. You have to admit, that a screaming child is just no fun to be around. Especially a screaming child that refuses to be soothed by all of your best tricks. I felt for them and especially Brooke who adored his daughter. She nursed until she was 16 years old. Just kidding :) I had to wean her when I was pregnant with Jack to give my body a little break before he arrived.

There are certain stories that stay crystal clear in my memory and the rest is recalled as the "foggy years". On this day, Molly and I were at Boulder Park as we lived across the street near Memorial Hospital. Jack was not born yet so she had to have been about 1 1/2 years old. She was in the swing and there were other little kids with their moms swinging too. I was trying to engage Molly as I stood in front pushing her. I would feign that she had kicked me as she swang?, swinged? (is that a word?) forward. "OOF!" I'd say falling backwards. She would look at me blankly, no smile on her face. Meanwhile the other two kids were watching me and cracking up. I loved them as they made me feel funny and like I was a good mom. Molly gave me nothing. It was the first time that I felt.....something. Wasn't sure what exactly...but like I was missing out on this parenting thing that I had looked forward to from the time I could remember. I had always wanted to be a mommy. Once the other families left, Molly and I were alone at the park. I made the mental decision to let her sit in the swing until she asked to get out. It was always me deciding what we would do and I had observed those other little kids wanting to now go slide or to get down out of the swing. So I sat on the bench and waited. She sat still in the swing and waited. Her little legs dangled, she looked around but never at me with a pleading look. She just sat.  And waited. We would still be there today if I had had the patience.

You see I now know that children with autism have extreme difficulty with initiation. Don't ask me why?! We STILL work on that challenge with Molly. Today she will walk into the room, stand still a few feet away and stare at me. I know what she wants as it's always the same. She wants to take a bath. Or maybe I can read her mind? I'm not sure at this point. I have to MAKE myself sit and wait her out. It's so much easier to say "Do you want to take a bath?", she'll nod and high tail it to the bathroom and wait for me to turn on the water. It's so much faster that way too. But instead, for learning purposes and her growth, we might make a subtle prompt with our eyes towards the bathroom, or say to another person in the room "I wonder what Molly wants?", or turn our backs so that she is forced to move forward and get my attention and then sign (her two hands rubbing together) "bath". She gets HUGE praise when on the rare occasion she walks into the room and straight off the bat signs "bath". Love it when she does that.

So I'm still struggling to figure how to upload video for you. I will persevere so that one day soon you can see cute little Molly before....and then now.

Brain Tumor or Autism?

I don't want to post Molly's little bit of talking and singing now, as you would not think that it was very impressive. Let's be honest, most 2 year olds speak better than she does currently, but it's the hope of progress that keeps us going. I need to give a few back ground posts and figure out how to upload pictures and videos first. THEN, once you see how hard talking really is and have walked in our shoes for a bit, I'll give you the good stuff.

Molly was just about to turn two years old and Jack was 3 months old when we got the devastating diagnosis of autism. 15 years ago this was an extremely rare occurrence. I couldn't believe our "luck" when 1/10,000 children were given this diagnosis and our beautiful like girl has THIS? All I knew at that point was that Rainman had autism and my daughter was NOT going to grow up acting like that! "Judge Wapner". However she was excellent at gathering like objects (fists full of pencils, or markers, or all her dog stuffed animals) and she did love to watch cartoons for hours.  When a friend asked "Does she love to help with the baby and go get a diaper for you?" I thought to myself- "Heck no, she wouldn't even understand me if I asked". It felt like I could speak Russian to her and get the same lack of response. Of course, in hindsight, we should have known something wasn't right, but this was before everyone knew about autism and she was our first child. Every year since, I have felt like a part of a much bigger dysfunctional family as quickly the stats changed from 1/10,000 in 1999 to 1/500, to 1/250, to 1/100 diagnosed on the autism spectrum.

Here are todays grim statistics via the Autism Speaks website:

- Autism affects 1 in 88 children and 1 in 54 are boys
-Autism prevalence figures are growing
-Autism is the fastest-growing serous developmental disability in the US
-Autism costs a family $60,000 a year on average
-Autism receives less than 5% of the research funding of many less prevalent childhood diseases
-Boys are nearly 5 times more likely than girls to have autism (see how lucky we are to have a girl on the spectrum?)
-There is no medical detection or cure for autism

As I think back on those early days, I recall feeling overwhelmed by it all. We were told by the pediatric neurologist that Molly either had a brain tumor or she had autism. I truthfully wasn't sure which one to pray for. A brain tumor you can at least surgically remove, right? Autism was forever and the books were not giving us much hope. Neither was Rainman. I wanted to be with her when she went in for her MRI, but as soon as her tiny, little 22 month old body was put under and started going into that giant tube.....I lost it and started bawling. Brooke and I had to switch locations as he came in to support Molly and I went out into the waiting room full of old people who were there for their MRI's too. I could feel their empathy and questions for why we were there. At the time, I didn't have the heart to notice what life perils had brought them to the same sad venue.

As you know, there was no brain tumor, and we started down the long, long, expensive, no real answers path to where we are today. Gosh I'm glad that we are here and not there.

1st blog post and why I'm doing this.

Our beautiful, gentle daughter just turned 17 years old a month ago. Where have the years gone? From the time she became school aged (3) and entered "the system", the chaos of IEP's, medicaid paperwork, and planning for her future, we have been thinking that this day was SO far in the distant future. Now we are facing her graduating from high school just one short year from now. "What will she do when she graduates?" The is the question that we hear from everyone that is kind enough to care. We ask ourselves the very same question. What IS the plan? Will she live at home for the rest of her life? Sure why not? I dreaded that thought when she was little and smearing poop on the walls, but now I kind of like the idea. She's WAY cleaner than her dad or her brother and she's so happy all the time that she creates an aura of joy and innocence in the home that we all need. I get nervous that once her younger brother heads off to college,  she will see that as an option and might want to head off too? She can't even cross the street on her own nor turn on a shower without scalding herself, so the idea of college puts me into a total panic. We'd ask her what her future dreams are if she had the ability to really answer, but those kinds of conversations are more frustrating than revealing. Here is a typical conversation around gifts: "Molly, what do you want for your birthday?" Silence. "What would you want for your present?" She will say on her "talker" (her augmentative device that is iPad sized and what she uses to talk) "present". ""No, but what do you want INSIDE the present, inside the box?" "Present". So that's kind of how the whole "what do you want to be when you grow up?" conversation goes. "Up". These are abstract concepts that are tough for her. We get no real answers. So she might still be living at home when I am 90 and can then wipe my poop smears off the bed :)

Basically Molly is non verbal, however in the last year 2 years since we introduced the VB-MAPP system of teaching her, she has begun to blossom. Brain connections are being made and it is fascinating to see the changes. She has about 20 spoken words and when "Mom" came out a few years ago, you know that I was thrilled. I would have cried if I hadn't have been SO surprised! So I figured that with all the new exciting changes that we continue to see in Molly, that blogging about her, uploading videos about her, and sharing the little milestones, will help our family to document the fun and maybe even provide a little hope to other families that are along the autism ride too.

I'm excited to document what is happening currently, as well as post pictures and videos from her first 17 years of life, to give perspective on how far we have come. Not really sure how this whole blogging thing goes, but let's give it a try!