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Oh, Happy Day

Today, as recent as an hour ago, I hated my life. After mopping up a flooded bathroom floor for the 3rd time this week, trying to avoid being smacked in the face, failing to rescue a picture frame from destruction, barely rescuing a crystal vase from a similar fate, and dragging my crying, flailing, 60-lb 5-year-old son across the room to keep him safe, I was ready to give up.  I literally wanted the earth to just open up and swallow me whole.

Right now, my autistic son is going through a state of major regression, which basically means that he lost skills and/or functions that he had as recent as a week ago.  We were warned about these periods of regression – how all of the sudden one day you just have to start over, pretty much throwing away everything that “worked” before & develop new strategies, create new boundaries, figure out what works NOW. Because the other stuff doesn’t work anymore.

Let me give you a better picture: for those parents out there who have 2 or more children, do you remember what it was like figuring out that what works on one kid doesn’t necessarily work on the other? Maybe you have one child who would burst into tears with a harsh look, but the other was so defiant that stronger measures had to be taken. Or maybe one kid breezed through Math while the other needed tutors, extra homework and constant monitoring just to get a C. Imagine all of these things all balled up in one kid, and changing every so often during childhood.

Don’t get me wrong, my boy is smarter than ever; I’m positive there are amazing things going on in his mind…It’s just that he struggles with sensory issues that cause his body to get in the way of his mind. And his body is freaking out again, except this time he is heavier, taller, and stronger. We thought we had finally overcome this obstacle, but we’re back to square one.

And my heart breaks daily because of it.

So, I cried today. And I screamed. And then I hated myself for screaming and crying. And I hated that I felt like a bad parent. I hate that I love him so much and can’t help him. So I guess you could say that this was a BAD DAY.

Still, even in the midst of my absolute destruction today, I remembered a music video that always brings me joy. It just happens to be a song called “Oh Happy Day,” and it is featured in the movie “Sister Act 2.” So I got on my computer, and I played the video of that song. And I cried, and then I smiled, and I sang, and then I cried some more. Then it hit me. I know why I love this video *so* much. It’s because of the progression of emotion that unfolds during the course of the song.

See, in the beginning, the teenage choir and their soloist appear obviously unhappy while singing those words. Oh Happy Day.

Haha, they WEREN’T HAPPY. But they still had to sing those words. They had to keep singing that stupid song, even though they didn’t feel anything like its intended message. But then something wonderful happens…someone encourages them, sorta whips ‘em back into shape, reminds them of why they’re doing what they’re doing, and BAM. All of the sudden, that soloist starts singing with more intensity. And that choir starts getting more confident. And that music builds and builds, and it feels like they fight the world, singing with everything they have, until they are finally bursting at the seams with JOY. OH Happy Day!

That’s what it’s about, that’s what we do, THAT’S how we FIGHT when we have days like this. Just keep singing. Just keep moving. I don’t have to put on a happy face at first, but when I keep singing and fighting, and I remember why I’ve been chosen especially for this job, that sun begins to burst through the clouds and I swear that Heaven shines down and the angels shout it, too: OH HAPPY DAY!

And then it all falls into place. And I watch that stupid video over and over again. And I calm down, take a deep breath, and move forward. And my son visibly gets a little calmer, too.

So next time you’re hoping that crawling under a rock will help your mood, I dare you to watch this video instead and not have a big fat grin on your face by the end of it. In fact, I double dare you 😉

Click Here & enjoy: “OH HAPPY DAY!” – Sister Act 2

UPDATE: Alex has begun to stop and watch this video *with* me! You wanna know the best part?  He sings along =D

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Angel

When I was a girl (and even as a young adult), I used to write poetry when things in my life were going badly. I poured my heart out in ink onto a piece of boring notebook paper. All the injustices in the world, all the heart-breaking middle school romances that tore my world apart…they’re all there, on those old, tear-stained pieces of paper.

I was quite the drama queen with a pen. But I had good reason to be.

All my life I’ve rooted for the “little guy,” fought like hell for true love, and offered kindness to the hateful. I befriended people who were the hardest to get along with…because they needed someone. I believed I could save people, thought I could reach people who didn’t want to be reached. And I succeeded in some cases, though my heart still aches for those I lost.

I cried a lot. During the hardest times in my life, I think I cried daily. People called me oversensitive, said I needed to “grow some skin.” My mom told me that my sensitivity and gentle spirit was an incredibly important part of who I was, and is now ultimately, who I am today. But I just felt broken, like there was nobody else out there in the world that felt what I felt.

One day when I was 21, still crying, still broken, and once again betrayed by someone with whom I thought I had made a difference, I made a phone call to my brother – probably the only other person in the world who truly “gets” me – and told him what was going on. I told him that I felt sort of like an angel in a world filled with darkness and lost people. (Please understand that, by “angel,” I meant a loving person, with honest motivations and a good heart, reflecting a purity in spirit that much of the world leaves behind in their childhood. The concept was not at all founded in arrogance.)

It’s just that I quite literally felt like I didn’t belong in this world, and that was a dangerously lonely place to be. It seemed that, for every one person I helped, there were a thousand others that made breaking my heart into a game. I was constantly questioning how the world could be so mean. And as I cried to my brother that day, I somehow communicated the fact that “I just don’t feel like there’s anyone else out there like me.”

My brother stopped me right there, and said “Kristi, there *isn’t* anyone out there like you.” He also alluded to the fact that I sort of was like a modern day angel, which was a good thing. I spent more time in tears, but they were tears of relief – I finally felt like someone heard me, and helped me to see that there was nothing wrong with me. I knew then that I could face the world with my head held just a little higher. I changed that day, mostly for the better, but my heart had to harden a little in order for me to move forward.

So now I am 34, and many things have happened since that conversation with my brother.  It is true that, no, there isn’t anyone out there exactly like me. But there are good people in the world, other modern-day angels who care as much as I do, and long to make a difference. I have also come to terms with the concept that, during my darkest hours, when life was the most painful, I was never alone. And that those same feelings that seemed so awful now serve a purpose for good.

You see, I have been in “training” to be a special needs mom in me since I was a very little girl, which means that I have been conditioned and prepped to love children both children and adults who society labels as “difficult” people. And I have been groomed for the job since I could first speak for myself.

As a child, I suffered greatly for this. As a teenager, I cried daily for this. As a young adult, I was used, abused, and sucked dry by people who were drawn to my passion, my optimism and the light I “cast” upon shadows. I was ridiculed when I loved on those who were considered “undesirable” by others. And even as a grown woman, I still give a bit too much of myself. All anyone has to do is ask it of me.

But now I know why.

As a mother, I have finally realized that all of these hardships have added tools, year after year, one at a time, to my toolbox as a special needs parent. The teardrops which caused ink to smudge on those old poetic pieces of notebook paper were not shed in vain. They are marks of courage and expression, war wounds earned during very strenuous times.

I have an autistic child. And he needs me. And God knew that my son would NEED me to be prepared for him before even I knew I’d even be having a child someday.

In fact, God gave me a gift. I am special, I am necessary, I am STRONG, I am an emotional WARRIOR, still advocating for the little guy – MY little guy. But it’s not a curse.

It’s a reward.

It’s a reason.

It’s an honor.

My whole, dramatic, sensitive, crying, fighting life finally makes SENSE. And *that,* my lovelies, is why I keep on writing. No more tear-stained notebook paper (Thank God my keyboard is pretty smudge-proof). No less injustice in the world. No shortage of lost people. But now I have a reason. Now I have a way. Now I have focus and direction.

So look out, world, you have an angel to contend with. The halo may be a little twisted, but these wings were made for flapping – and passing wings on to my child is just the beginning…

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Light it up BLUE

April 2nd has been declared “World Autism Awareness Day,” a title that is rich in meaning to many people who care for individuals with Autism. Even our U.S. President made an official proclamation this year, in recognition of the day that will be remembered every year in order to raise awareness for Autism.

On this day, and during the whole month of April, a tradition has been in effect by many major organizations that advocate, educate, and raise funds for Autism Spectrum Disorders. In fact, “Light it up Blue,” (where people everywhere are encouraged to use blue lights as a symbol of shining a light on Autism) is a tradition that the wonderful organization “Autism Speaks” has advertised and used to raise Worldwide support for 3 years.

Did you read that right? Did you *really* truly read that phrase “Worldwide support” and comprehend what it means? Because it’s a wonderful thing to raise *Worldwide* support, and to know that people all over the globe are “lighting it up blue” in support of shining a light on Autism.

So today I posted a link with pictures to the “Light it up Blue” website, where many pictures of famous buildings all over the world have changed their lighting to blue for this day, and a friend of mine on Facebook told me it gave her goosebumps.

When she said that I responded to her in a way that drove me to write this blog tonight. I supported those goosebumps and raised her a few by saying the following:

It’s a wonderful, worldwide show of support, but it is also a perfect example of how Autism does NOT discriminate. These different parts of the world aren’t necessarily showing support for Americans with Autism (as is all too easy for us to assume in the USA) – they are showing support for their OWN kids (and for their own people) all over the world who have Autism.

As Americans, we are not alone in our struggles with Autism; and while that may seem a little scary, I think that, in some small way, it unites us – globally. And let’s face it; if anyone can unite quibbling countries from around the world, it’s children.

Now there’s some goosebumps for you.

The pictures shown on the Light it up Blue site are incredible, famous buildings (and attractions) from around the world, literally turned blue for a day to support this cause. Japan, France, China, Hungary, the U.S., Mexico, Canada, Brazil, Egypt, Australia, even Saudi Arabia…my God, people, this is incredible! Autism is very real, very beautiful, very difficult, very global. And it is a cause NOT to be ignored any longer.

So, Light it up Blue for a day, a week, or this whole month of Autism Awareness! Change your porch light to blue, wear blue 5 days in a row, make your Facebook profile pic blue…whatever you can and will do!

And when people ask you “…why are you doing this?” or “what’s with the blue?” You tell ’em. You tell ’em I told you to Light it up Blue for Autism 😉

And then you tell ’em to go check out the picture of Niagara Falls lit up blue, and to just try & ignore those goosebumps 😉

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Yes, Love really does conquer all

A couple of posts ago, I featured a YouTube video about a little girl named Maddox, who has Down’s Syndrome. When I did that, I explained a little bit about how certain aspects of the video had really affected me personally. But there was one quote from the video that still touches me deeply, and, at times, brings fresh tears to my eyes. That quote from a little girl’s Mommy to the world simply said:

“I want to fall in love.”

Why did that affect me so much? What was it about such a simple statement that haunts me every day? It is because my son also has a disability that makes him different from his peers. My five-year-old son has Autism, and is currently struggling to make conversation, along with some other key life skills that typically developing children have mastered.

My point in saying all of this is that we don’t know what level of disability he will have as he grows older. See, Autism is like a rainbow…it’s made up of all these different types of kids who have autism, but none of them are ever completely the same. That’s why Autism is typically referred to as “Autism Spectrum Disorder” (ASD). Some kids end up being very high functioning and live out a pretty normal life after a certain amount of therapy. Others may never speak, or learn to communicate in an effective enough way to live on their own.

When my son was first diagnosed, at age 3, his doctor commented that she had seen many children with similar behavior who had gotten to about third grade and ended up being a lot like a typically developing kid, just with some “quirky” habits. But, although Alex has achieved many great things in the last 2 years, he is not yet on track for the road we were hoping to travel.

Now, I may be worrying over nothing, but essentially I fear the great unknown. And the great unknown means that I don’t yet know if Alex will be high-functioning or if he’ll be living with us for much or all of his life.

And my greatest fear is that, if he is high functioning, I don’t know if he’ll develop the ability to fully bond with, or relate to, his peers. A lack of empathy is a well-known symptom of the high functioning form of Autism called Asperger’s Syndrome, where communication develops and intelligence is usually high, yet the individual fails to grasp some key elements that are important to relationships, such as the ability to empathize (or literally understand) the way someone else is feeling. Appropriate social interactions can be taught, but people with Asperger’s may never feel fully connected to the rest of the world.  Research tells us people can still *feel* their own emotions, but they often don’t comprehend why someone else may be feeling a certain way.

The concept of Asperger’s used to break my heart (keep reading to see why it “used to”). The thought of my son not being able to empathize with others, or develop meaningful relationships absolutely terrified me. There’s a reason for this…I am personally an incredibly emotional person, and I often take time to spend time with others who need to talk. And if I can empathize with them, if I can share my experiences that are related to theirs, I do. That’s my heart, and it’s just a huge part of who I am. I believe in love. Compassion is very important to me. It’s why I started this blog.

So how does this all relate to a little girl with Down’s Syndrome who wants to fall in love someday? Well, it’s simple:

I want my son to fall in love one day.

I want him to feel love, and to fully understand the love he is given in return. Someday I want him to relate to a woman enough to hold her when she’s crying and laugh with her because she’s smiling. And I am scared that he may never truly understand that kind of love.  And I can’t wrap my head around why God would bestow such a thing on any human being. I kept racking my brain, trying to figure out what people with Asperger’s are here to teach us, and how they live with never really connecting with people.

Well, I know a man with Asperger’s who was diagnosed very late in life (which is common). I finally decided to speak with him, to try to get a better understanding of how it felt. So I asked him about empathy sort of sheepishly, and he confirmed that it was true, he grew up never really feeling like he connected with anyone, and that it was a hard thing to comprehend the actions and emotions of others. (My heart kind of sank when I heard this, because I was kind of hoping it wasn’t true.) But then he said,

“Until I met my Wife.”

And now I know that there is no need to be afraid of the future, or what kind of Autism my son might grow up with. I know that there’s no need to fear individual symptoms like the lack of empathy, and that there is so much hope and love and compassion out there, that there’s enough for everybody. *Especially* for those people who have a hard time understanding it.

And wouldn’t that be the best way to find love? To one day meet someone who finally triggers a response in you that you’ve never felt in your life? That, my friends, sounds like the true definition of a soul mate.

Research says the odds are stacked against us. I say that Love conquers all.

_______________

Note to readers: Please remember that the symptoms of Asperger’s syndrome described here are based on my simple research and may or may not apply; note the use of the words “may never connect” and the like, which means that the opposite may also be true. There’s a very important saying when it comes to Autism, and it goes like this: “If you’ve met one person with Autism, you’ve met ONE person with Autism.” Thanks 😉

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It Matters how hard YOU work.

There are many good causes in this world, many injustices, and – closest to my heart – many children with special needs. These children  make our heartache when we see their disabilities, especially when, with things like Down’s syndrome, they are so obvious to the naked eye.

Well, I recently came across a video, where a little girl and her mother will change your ideas about feeling “sorry” for these kids. Special needs children are on this earth to rock our world and change our lives.

I really want to encourage you to watch the video posted at the end of this blog – though it is a little long – because it will do just that…change your life, change your outlook. The purpose of kids who are “different” is far greater than we gve them credit for, and it makes my heart swell with pride to know that God has gifted me with one of them.To give you a sneak peek at some of my favorite parts of the video, This little girls’ mother uses flash cards with writing that explains some of the things the little girl wants out of life. Here are some of those points:

“My friends get to have fun at dance, gymnastic, music, and library while I go to physical, occupational, and speech therapy.

I spend all this time working for one thing.

A CHANCE at having the same opportunities in life as my friends. I want to be invited to birthday parties, I want to attend public school. I want a career, I want a home, and I even want to fall in love.

Most people don’t have confidence in me to accomplish these things. The reality is it doesn’t matter how hard I work.

It matters how hard YOU work.”

Wow. Just wow. Click below to watch the video. Have kleenex nearby.

Down Syndrome Awareness – Maddox Lucille

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Our top 21 Best Special Needs Parenting Moments of 2011

Our top 21 Best Special Needs Parenting Moments of 2011:

1) In January, Mommy & Daddy take the family on an impromptu beach trip, and Alex discovered his love for the ocean.

2) In February, Daddy taught Alex about his other love in nature: Snow

3) In March, Alex really started using the best learning tool we’ve ever found: The Ipad.

4) Also in March, Mommy put together a nice, new wooden train table for Alex’s Trains and tracks. Alex proceeded to use the floor instead!

5) In April, Mommy organized Team Alex for the 9th Annual ASO Autism Walk-a-thon. By the time the walk came, Team Alex had 52 walkers and had raised over $2,000 for the Autism Society of Oregon! The increase in support was an overwhelming 800% from the prior year. Because Alex had a hard time walking, Daddy walked with Alex on his shoulders.

6) Also in April, Alex attended his 1st real Easter Egg hunt at a church who provided a special area for kids with special needs.

7) In May, Mommy started the “Mommy4Autism” Blog you are reading today!

8) In May, Mommy taught Alex to make cupcakes; he is such a great helper and he loves to bake. Only problem is that he really, really, likes to break eggs open. Everywhere.

9) Also in May, Daddy taught Alex to say “I love you, Mommy,” just in time for Mother’s Day.

10) In June, Alex got the chance to attend Vacation Bible School at his very own church, with Mommy and his favorite babysitter, Illy, close by. He only made it about 3 days but he loved the music and all the games!

11) In July, while Daddy took Sissy to camp, Mommy and Alex bravely walked to a neighbor’s house to celebrate Alex’s 1st real Fourth of July experience (with fireworks). Alex didn’t like to set off the fireworks, but he liked watching Mommy and playing with the big kids’ motorbikes! He even made friends with a couple little kids from the block!

12) August was a big month! Mommy, Daddy, and Alex (plus Illy) took a trip to an Autism Immersion Camp at Meadowood Springs! What an amazing adventure Alex had as everybody learned more about each other. This is where we learned the “hands to face” technique, and acquired the connector, both of which have been amazing communication tools for Alex!

13) Also in August, during family time at the camp, Mommy strapped a life jacket on Alex and took him swimming and wow, we discovered we have a little fish for a son!DSC09310.JPGThe kid doesn’t technically know how to swim, but you could have fooled us! Alex also adored riding in the canoes with Daddy and other friends!

14) Because of our experience at the Autism Immersion Camp, Mommy learned a very important lesson: to calm down, in order to help Alex calm down. Daddy quickly followed suit and the results have been great.

15) In September, Alex started his first day of Kindergarten! This was exciting, butDSC09660.JPG also disheartening as it became clear that he may not have been placed in the proper program for his needs. Mommy began the process of personally evaluating his situation, entering the classroom and speaking regularly with the school.

16) In October, Mommy carved 4 pumpkins by herself, trying to get Alex interested in the Halloween tradition, to no avail. Later, Mommy braved the craziness of a pumpkin patch for Alex (in the pouring rain), who adored the Hay stack pyramids and the Corn box (like a sandbox, but with corn)! He got to pick out a pumpkin while we were leaving, and guess what? DSC00032.JPGWhen we got home, Alex drew out his first Jack-o-lantern face on that pumpkin (with a little help from Mommy) and Mommy cut it out for him. Yay!

17) In November, Mommy took Alex back to the coast for a little Mommy-son time while Daddy & friends worked on the house. It was not the easiest weekend in the world; we both came down with colds. But Alex adored the experience, which included the ocean (his favorite) and a trip to the aquarium to see the sharks.

18) Around this time, Alex developed an absolute adoration for Daddy’s laptop computer and all the wonderful games it had to offer him! PBSkids.org is where it’s at, folks! Mommy’s always on her laptop, so it wasn’t exactly hard to figure out that he’d soon follow suit!

19) December came around and Mommy’s pursuit of Alex’s education and happiness finally made it through to the school system. Along with 6 other “Alex fans,” we faced pretty much all the special ed educators at Alex’s school and finally made the decision that he wasn’t in the right class for his needs. The meeting was amicable and pleasant, which was a relief to everyone I think! He’ll get to start over in a new environment as soon as the paperwork clears in January!

20) Another exciting moment in December came when Alex finally got to join his little friends at church in their annual Hand Bell choir presentation. The bells were color-coded, and he never really stopped doing his own thing on Sunday Mornings to practice. But Mommy was determined, so we practiced every day after school, and Alex played that yellow bell twice on Sunday morning, then even said his name in the microphone at the end of the program! Yay!

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21) December also brought craft fairs, and Christmas decorations all over stores. Alex decided that Santa and snowmen were pretty cool, as well as all of the sparkly stuff everywhere. He really started to understand the concept of Christmas and presents this year, which was another dream come true for us…he even surprised us further by pointing out Baby Jesus in Mommy’s Nativity Scene.

Th335411_2957045004627_1216556390_33251876_2112514523_o.jpgese are the most precious family & parenting moments from our very difficult year. Mommy and Daddy learned so much about Alex, autism, and maybe most importantly, themselves.

Happy New Year! ❤ Mommy & Alex

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Be Aware – for Family & Friends

It is rare that I come across a piece of writing that is so profound in nature that it literally leaves me without words to describe it properly. I won’t do it justice, but let me just say that the following blog post is the best one I have come across that offers enlightenment and advice to friends and loved ones of families with Autistic children.
The tears fill my eyes quicker than you can say “autism” and I can’t stop reading it for all the truth and phrasing that I wish I had been able to communicate as effortlessly as this man did. I want to plaster this on the walls of the world so that everyone reads it and understands what we, the families, are like, what we go through, and what we desire from our loved ones.
Please take the time to read this, and pass it on if it struck you the way it touched me…
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Marathon, Interrupted

Much to the chagrin of some of my friends, I am not a runner, but I have the utmost respect for those who are dedicated to the pursuit of such amazing feats as Marathons.

Well, the other day I really started thinking about what goes into the task of preparing for and running a marathon.  From what I understand, a distance runner must push past certain mental and physical hurdles in order to move on to their next goal.  For some just starting out, it’s making it past that 2 or 5 mile mark & learning to pace oneself. For others, it’s pushing past that half-marathon place to move forward and train for the big one, which will take their bodies through 26.2 miles of sweat, tears, perseverance, and eventually, triumph.

Julie A. Buckley, M.D. said, “I have likened raising a child with autism to running a marathon, but what we parents know is that sometimes, every few miles we run into a roadblock, a hurdle to clear, a fiery hoop we have to jump through.”

Correct me if I’m wrong, but I’m guessing that fiery hoops and the like do not occur in actual marathons. So today, I am here to give you my perspective on my version of my own personal marathon I “run” to make the quality of life a little better for my autistic son.

I start out with my 2 miles in the morning, and sometimes I choke back sweat and tears simply trying to get my son ready for the day. I’ll say to myself, “I can’t do this … my body & heart are not physically capable of moving forward.”  But support comes at me from all directions…”Yes, you can, Kristi, push past it – push past those two miles of difficult behaviors and keep going!”

So I keep running, and I keep on believing, and I make it past my first challenge of the day and get my son off to school in the morning fully clothed and maybe even fed (if I’m lucky). And then I work through the day, waiting for the calls or emails or notes home that could come from the school any moment informing us that things have been tough (Hurdles). Maybe that’s my 5 mile mark…

Sometimes we get good news, and Alex comes home and we laugh and we giggle; I bond with my child the way my heart aches and longs for every day. Unfortunately, the next day, my child might be back to where we started. Road block. But I keep running, because I have to – marathon’s not over yet!

Some days we have great meetings with his teachers and get plans set in place to help Alex be more successful. And it works for a while. Progress. This is our completed half marathon, our triumph – we’re almost there right?

My autistic child seems to get “better” for a while, the road seems easier to navigate, and then I’m on a running streak. I’ve got that high, that second wind comes rushing in and I feel like I can do this forever.

And so there are days, those rare occasions, when everything seems right. Life is going well. School is working. In my case, my child is not hitting or kicking; things seem simpler…like perhaps we saw the darkest moment, and our dawn has just arrived. So maybe, just maybe, we might cross that finish line today after all. And so we run, exhausted, because those last 5 miles are just killing us, but then all of a sudden we can see the finish line. We run faster, push harder, ecstatic that this whole thing is coming to a close, clinging to the hope that we get to go home & rejoice because we’ve finally found the right combination of things that help our child.

And we make it to that finish line…but there’s something wrong. Something shifts, our child changes, some sort of regression occurs in their behavior, which brings us to a screeching halt. There’s a Fiery Hoop in our way. We look ahead, beyond that finish line, we see that a new “Start” line has appeared, and the next race begins NOW. And we don’t have any choice but to keep going.

Our legs are aching, our back is killing us, we can’t breathe, and our toenails are falling off, but it doesn’t matter, because we have to jump through that darned hoop and start the next marathon. We don’t often even get much of a chance to celebrate finishing that first marathon, though we try. All the things I’ve done, all that I’ve trained for, all the miles and hurdles and roadblocks I’ve overcome, and suddenly I’m back to that 2 mile mark I have to push through again.

Parents of Autistic children are used to picking up the pieces and pressing on. We implement new diets to balance our kids’ delicate gastrointestinal systems. Some of us have to play rougher than we want to with our sweet babies, just to get them to calm down, while still others have to be gentle, or keep headphones on their children because of their sensitivities. We dress our kids in clothes that won’t bother their skin, load them up with devices like weighted vests and attempt to mold every social situation into a positive experience for everyone. Sometimes we stay home to avoid conflict altogether. We try to make our homes structured, and have normal conversations, but our children won’t always tell us what they need, so we rely on instinct or we create picture systems to encourage communication.

We consider everything from medications to holistic remedies, therapies and prayer. We worry that maybe there was something we may have done wrong in the past, so we constantly overcompensate. We have to look at every single thing our children do from every single angle you maybe never thought was possible. Because they can’t always tell us what they need. We fight the school system & daycare, and baby sitters drop like flies. Sometimes we feel like screaming at the injustice in the world that makes it harder for our kids to succeed. Hurdles, Road blocks, all…and don’t forget those Fiery Hoops of despair that shock us right back to the beginning of our training. I hate those hoops.

So sometimes we want to give up. We want to throw in the towel, walk away, and say “I don’t need to finish this marathon today.” And maybe we don’t (today), but there IS no giving up; these are our children. Throwing in the towel is not an option. And so we get back to basics, face the new, looming “Start” line, and begin that next marathon.

Raising a child with Autism is like running a marathon, every day. The training never stops; the start and finish lines must always be there to keep us learning what needs to be learned.

Regular Marathons – while grueling, difficult and finally triumphant – ultimately come to an end, often resulting in a free t-shirt & a medal & glory for finishing. Being the parent of an autistic child, searching for ways to help them succeed, does not come to an end, at least not in the gratifying amount of time we, the parents, would like it to. And we certainly don’t get a medal for our efforts.

So we strap on our running shoes, which are brand new for some of us, and worn & tattered for others. And we get back up every morning and we run some of our marathon. We succeed and we fail, we get up and then we get knocked down. But we get back up again. And we jump those hurdles and push through those roadblocks, and we yell as we launch ourselves, fighting, through the rings of fire. And eventually, like a seasoned runner, these things get easier to tackle. We begin to learn what we have to in order to help our children grow and have a fulfilling life.  And it’s a different path for every one of us because none of our children are the same.

Runners, marathoners, are amazing people. And so are we.  And just like those runners, we will press on. But right now, some of us are just facing that next starting line and trying not to cry.

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Halloween

Growing up, we didn’t do so much in the way of decorating for holidays. Well, more appropriately, I should say that, before the age of 10, my mom had boxes of decorations for each holiday that we used to pull out and get festive with, and my parents used to go to Holiday parties & stuff.  But I was 8 when my parents got divorced, and, as I grew older, the decorations got fewer and fewer over the holidays, Christmas included. I think it must have hurt my mom to have so many memories of family holidays (they were, after all, married for 20 years)…and so we just stopped really doing much decorating or overdone celebration of anything, really.

We did try to have a decent Thanksgiving once, but it turned out all wrong, which we laugh about. Not to mention any time we had a traditional dinner forced on us it was just stressful and thankless. After a while, we simply opted to have pizza for Thanksgiving.

As I got older, my mom started traveling a lot and sometimes she was gone over the holidays. I stayed home, usually to work, since I got time & a half on holidays at my retail job at the mall.  My senior year of High school, I insisted on a tree, so I went out and bought a little tiny tree and decorated it. Then, that Christmas morning, I went to a movie by myself.

For a long time, I was okay with that. Holidays & birthdays were a frame of mind – they don’t absolutely have to be celebrated on the actual day of the holiday – do they?

See, I love Halloween. I’m not sure why, it’s just always been one of my favorite holidays…and it’s not just about the candy, I swear!  I think that I’ve just always loved any excuse to dress up and be someone else for a while…it’s probably why I got so into drama in High School!  My brother and I used to go to the pumpkin places and try to find the saddest looking pumpkins to rescue, since we knew no one else would want them…

Well, 3 days ago I had all my family together.  By all my family, I mean I actually had my husband, stepdaughter, and son all together in one place – our home. My autistic son was doing his little rambling thing that he does sometimes, but this time he said very loudly, “Halloween!”  And that was enough for me.  If my son is starting to understand holidays, I want him to know what fun is involved when you’re a kid during the holidays!  I was excited; I took the kids to pick out pumpkins, and by gosh, we were going to carve those things as a family!

Well, we ran out of time. Alex was fussy, he wouldn’t sit. Harmony didn’t care to engage in anything (teenager), and my husband was exhausted from work. Okay, no problem, I thought – we’ll carve tomorrow night.

So 2 days ago I was supermom, and I decided it was family activity time!  Now, my stepdaughter had, unfortunately, already returned to her mom’s house, so I was down a family member.  And then my husband was resisting. To make a very long story short, he didn’t feel like carving a pumpkin, and I didn’t feel like forcing someone to do something they didn’t want to do. So I carved a pumpkin.  My son expressed a small amount of interest, but lost it very quickly.  But at least he played with his trains next to me while I worked.

Yesterday I lost hope. 2 pumpkins remained, untouched. An old box of Halloween decorations gathering cobwebs in the shed. Another holiday to go unnoticed.

And then I thought to myself. Why? Why should it go unnoticed?  Because Alex doesn’t fully understand it yet?  Because it’s not important to my stepdaughter or my husband or the rest of my world? Well, screw that, it’s important to me. And I think it will be important to Alex someday. He sees more than we think he does, I know it. So I walked my butt out to that shed and I braved the nasty spiders and scary things (is there a term for a phobia of sheds??), and I got out those decorations and I decorated my house with every Halloween adornment I could find.

And then I personally carved those 2 remaining pumpkins. And guess what? Alex likes the little ghost lights that blink. And every time he walks out the front door & back, he stares long and hard at those pumpkins. And he plays with the funny little stuffed ghosties and ghoulies on the couch. And he says “Halloween.”  And I say, “Yes, baby, Halloween!”

And that makes it all worthwhile.

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Ballerina

When I was about 5, someone asked me what I wanted to be when I grew up. Well, as many other little girls my age, I said I wanted to be a ballerina. Of course, then I actually took ballet lessons, and found out that 1) Ballet is hard and 2) I didn’t want to be like everybody else. I especially didn’t want to do the same dance every other little girl was doing. I wanted to do it my own way, to spin and twirl and laugh while I made up my own dance…*ahem* Needless to say, I did not become a ballerina.

Later on in life, someone asked again, what did I want to be when I grew up? I didn’t know. Sure, there were times when I thought maybe I wanted to be a lawyer, to rid the world of injustice, and then there was another time I considered veterinary work (until I figured out that all I could do was cry when I saw an animal hurting). But ultimately? I didn’t really know.

Even as a sophomore in High school, we were sort of coerced into making a decision about how the rest of our lives were going to play out. I took a stand because I didn’t think it was necessary. I mean, come on, I was 15! My greatest aspects in life revolved around my boyfriend, whatever play the drama department was doing next, and the latest music I was in love with (not necessarily in that order).

So what did I do with my life? What did I grow up to be?  Are you surprised when I say that, truthfully, I don’t really know?

I studied Music/Vocal Performance for 5 years in college. I also loved English and Psychology. So now I sometimes get paid to sing, but not every day. And sometimes I get paid to do some editing and even some tutoring, but not every day. I also really have a desire to help people and, based on my own history and struggles with mental health, I happen to have the tools and lingo to do so. But I’m no Psychologist, and I don’t get paid for that.

I work for a company that does International HR, for whom I do their Accounting and Customer Service, with some tech support and editing thrown in on the side. But is that what I grew up to be? Not really.  I also work part time for a network marketing company that sells skin care and health & wellness items, but I mostly do that because I love the products, the people, and the chance it offers me for a long term investment and a better retirement.  But I’m no esthetician, nor am I a “salesperson.”

I guess you could say that I grew up to be a “Consultant.”

Yesterday I looked up at the blue sky and I asked God, “Who am I?  Did I ‘grow up’ to be who you wanted me to be?” He didn’t answer directly, but an answer did sorta come to me when I thought harder about it. I was chosen. I was chosen to be all of these things.

But most importantly, I was chosen to be the mother of a high needs, autistic child. God chose me to raise a precious boy who needs someone to love him and fight for him and care for him. He chose me to be a part of something uniquely beautiful. He also chose me to be a part of something hard, something other mothers do not envy me for, something that I might have to advocate for all my life.  And He has been preparing me for this ever since I, a strong-willed yet sensitive child, didn’t want to be a ballerina.   ❤ Kristi

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