Dear Daddy- Why We Didn't Get All the Groceries

I better start this one by saying that, yep, all this stuff happened.  My two and a half feet of wisdom could not make this mountain of disaster up...

Mommy and her long list took us to the grocery store and once we went through those magic doors that open when my little self enters, Mommy's list got short, Daddy, real short.  First that fancy car cart was not so fancy 'cause it only had one seat belt.  One seat belt for no kids who will sit still is bad news.

Our ride, sans us, for some reason Mommy could not get a blog-worthy pic

Mommy put the strap for holding-you-down-so-you-can't-join-the-party on lucky old me. Parker got to drive and Ms. Fancy Pants Kenna sat her happy self on the floor.  Not the floor of our cart, the floor of the dirty-as-a-potty ground.  You know her, wanted her own cart and wasn't budging 'til she got it.  Mommy fed her that "special treat" nonsense she dangles over our heads whenever we go somewhere and lucky for our grocery list she bought it, and started pushing me and Parker's car, all fakey nice, like she was going to be the perfectest sister the rest of our trip.

Since my crib is calling my name, I better skip a couple aisles, tantrums, getting-in-and-out-of-the-carts and put-that-backs and get down to the good stuff.  

Now picture us in the milk section, Daddy...

Pretty much no one was in the cart (except my legs, one, two if Mommy was lucky) and by now one of the Crazy amongst us was carrying an apple with squoosh spots and a bite out of it, a deck of cards and wearing her rainbow jello, I was trying (with decent success I must say) to climb out the dashboard of my car, Mommy was catching me and squishing me back in with her hair all crazy in her face while she was blocking our basket with one leg so Kenna couldn't throw anymore juices in, when she remembered the other piece of our Crazy.  Lucky she looked between her yellow hairs that minute because she almost missed an amazing feat.  Parker, my idol of carnival proportion stunts, was hard at work.  Stacking and stacking breads and standing on them real good so they smushed so nice and then getting more and more and more, 'cause that coffee cream on the top shelf was calling his name, I heard it.  (You drink coffee when you are three? Can't wait.  I think I'll take mine black, or maybe double sugar, double breast milk?  Hmmm, decisions.).  Well, either way, I don't have to tell you that Mommy shut down his side show which set off fireworks of the Parker kind.  (We will never truly know what that boy can accomplish.)

In the middle of our show, a lady was watching us with her lips white-together.  Mommy said, "I'm sure you wish you were me right now" (I think she was being snarkastic, Ms. Jill) and that lady just asked Mommy to hand her a cream.  Mommy wanted to tell her where she could put her cream but she bited her tongue for my baby ears.

So things got even better at check out.  For the Crazies, not for me... totally strapped in at this point, just here for the show I guess.  Those silly store people put those shiny Easter egg candies right where three year-olds could reach and Mommy could barely unload the cart 'cause those eggs were a rollin' and a flyin'.  Oh and the apple from aisle whatever that was?  Kenna dropped it when she was blocking Mommy from pulling chocolate eggs out of her mouth, Parker kicked it to me, my car made the save and Mommy had even more to pay her money for.

And for the grand finale, because there is one, of course...

Mommy put Parker back in the car with me and as one last goodbye, he waved out my window and then, hold on to your seat Daddy...

   threw his perfectly detached steering wheel out the other window (so we could watch it roll away at that man getting the baskets, of course).  That boy, I tell you, he never disappoints.  Never!

Oh and Daddy, we forgot your Coke but don't worry, Mommy says we are going back when hell freezes over so we'll get it then.

Love the only one who can't unbuckle his grocery car seatbelt,

Sawyer


  

A New Dating Service?

I'm thinking of starting a dating service.

A playdating service...

somewhere you can put in where life has taken you, your parenting style, what Mommy traits drive you insane and what put you at ease.

a place to cut all the crap and make finding a mom who you get along with, and has nice kids to boot, a much easier process.

Since having kids I always had this vision of perfect playdates, coffee with moms while our children play peacefully, swapping recipes and clothes our kids have outgrown... the quintessential life of a stay at home mom.

Autism and preemies and loss and then getting pregnant again before my preemies could even venture out in public threw a bit of a wrench in my plan and it seems I have just joined the land of the living this past year.

And finding a mommy AND kid match is hard.  The mom can be great and then low and behold my son's on his back after a cheap shot from her never disciplined, candy-eating-in-the-morning, terror of a boy.

Or the kids can be off to a good start, clicking in whatever way three year-olds can manage and then the mom says something genius, and telling.  Telling me that our conversations have no future.

And my playdate visions deflate.

But I am learning.  I am learning that I am not going to find the mirror image of my family out there but if I give it time our lives will gravitate to each other.  I will bump into another mom on the playground who is sweating as I am because she also has more little ones than arms and not one of them is coordinated enough for the tall slide.

Or I will find the perfect friend in someone who is balancing triplets and special needs and coping with her own feelings of loss of a different kind, who doesn't flinch when I talk about all of my children and we will click and could close just about any restaurant, spilling tales of our crazy lives and laughing about things that aren't funny when they're happening.

And that is the perfect in the imperfect.

That there is no match out there, whether you have 2 kids, a dog and not a struggle to be had or whether you have a bit of an unconventional brood and are forced to search for moms who have walked your path, there is no magic service to help you find the matching mom and kids of your dreams.  You have to find them, or they will find you.

My friends from around the country, each with surviving triplets.

And when you do?  You will be rewarded.  With conversations long enough to drive a wait staff insane or kill a phone battery, with recipes they found (without the dairy of course), with a chapter long comment on your blog to tell you they get it or a few short sentences to say they don't but they are here anyway.

Since all that has happened from the time I became a mom and all that has not, I have often felt like I am on another planet.

In fact I think I might be.

But having visitors makes my planet a pretty comfortable place to live.

Edited to add: If you happen to have had a child when you were a bit too young who was then diagnosed with autism, got married eight years after that only to struggle with infertility, get pregnant with triplets, lose a child and then get pregnant again without even trying EMAIL ME, we are destined for the perfect playdate :)

My Favorites of 2010, I Think

So the year is a few days from coming to a close and I'm full of I can't believe it went by so fast's, the kids are getting so old's and I wish time would slow down's so it is a perfect time for me to sift through my year of blogging and laugh and cry with myself and reflect on the crazy journey life has taken us on once again this year.

I found a great idea over at Scary Mommy that gave me an excuse to pour myself a glass of wine, listen to the song that sings "Hadley" to me playing in my blog background and scroll through my collection of posts, trying not to be to critical while finding my favorites of the year.

Thank you for reading and for being the great commenters, followers, family and friends that you are.  This blog has truly become my outlet and an amazing source of support.  I look forward to seeing where it takes me in 2011.

My favorites of 2010 (I think... it is hard to pick from your own work and I'm terrible at making decisions.  This list may change if I continue to overanalyze myself.  Oh and I did better as the year went on so maybe just skip the first couple months, k?)

January:  Memoir of a Teenager

February:  Sparkly Shoes

March:  The Youngest

April:  Belonging

May:  One Last Visit

June:  For Sale

July:  Stick

August:  Once Upon a Time

September:  Denial

October:  Today- A Letter to My Daughter

November:  The Up Side of Autism

December:  Dear Daddy- Tales from a Public Restroom

I'm Still Standing- Featured Blogger

Christmas Eve is the perfect day to feature my next I'm Still Standing blogger because if there is one word to describe this amazing lady it would be "giving."  I was thrilled when she put her name in the hat to be featured because, since my first comment on her blog, she has become such a great friend.  I know first hand how supportive she is to people in her day to day life and to the people she meets out here in the blogosphere.  You would never know that she is a very busy momma herself, raising three children, one of whom has autism.

Oh and my favorite thing about this lady?  She gives me one more reason to want to visit Ireland which just so happens to be her place in the world.

If you don't already know her or haven't figured it out yet, today's featured blogger is Jen from The King and Eye.

Here is a post that Jen felt will help you get to know her best:

10 Things HRH Wants You to Know- a great post written by her little guy... very wise for his 2.5 years

Here is my favorite post because it is the most ingenious idea:

Blog Gems- Air Your Archives- Once a month Jen hosts Blog Gems.  She gives bloggers a chance to dig out an old post with a common theme and link to it on her blog.  I joined in for the first time last month and met all kinds of great new people and couldn't wait to do it again this month.  There is still time to join for December and link your first blog post ever... strange to go back and see where I was when my blogging addiction began.

Jen is parenting her children and bringing comfort and support to many other families while dealing with autism and Still Standing.

Hope you enjoy visiting Jen today, send her lots of warm, holiday wishes, she deserves them ten-fold.

To learn how you can get featured click the "Get Featured" tab along the top of my blog.


Merry Christmas,

Your Lunchbox

I have noticed a time or two lately that a certain teenager has been looking at my blog.  I would say reading but she has already explained to me that there are too many words in my posts so she just looks for funny pictures and makes sure she is not in them.

Knowing that one of my children may be reading a sentence I am writing here and there got me thinking about what I would write if I knew she was reading.

So here it goes Ms. Ashlyn...

Do you remember the day you decided that you should not use a Cars lunchbox anymore?

You were devastated and so was I.

You were starting middle school and you noticed that no one else, especially the girls, were carrying one.  My heart broke a little, because I knew you loved that lunch box and up until then you did what you did and didn't care about everyone else and their brown paper lunch bags.

Ever since then I have been trying to help you find a place where you can carry whatever lunchbox you want and I'm not having much luck.

It is tough for you to be a teenager, I know it is, but not in the dating, gossiping, stereotypical sort of way.

I know that the flash of a camera drives you nuts.  I know that a squeaky grocery cart makes you want to beeline for the door and that your dream outfit is one with no seams and no tags and no stupid buttons and zippers to wrestle with.

The lunchbox days

And the truth is I wish I could just follow you around with an embarrassing mom bag of sunglasses and earplugs and sensory toys but you don't want those things anymore.  You want to brave it on your own and I am so proud of you for that.

I don't think I, or anyone else in your life, will ever truly get what that amazing brain of yours has to do to manage a high school hallway or a family get together or a trip to the mall in December.

You are a tough cookie but I wish you didn't have to be.

I know there are days when you want autism to leave you alone and it doesn't and I wish there was something I could do about that.  

I just want you to be happy.

That is all I have ever wanted for you.  

That and a place where you can carry your Cars lunchbox until you are 80 and no one will bat an eye.

Love you even though I know you stopped reading this ages ago,

Your mom

My Grand Plan

I have been tossing around random thoughts lately that have ultimately formed into my Grand Plan.

After we lost Hadley I felt like I was the only mom on the planet to lose a baby, let alone a 2 day-old preemie who was one of triplets.  Never in a million years did I think I would connect with other moms and bloggers in the same position who would inspire me to put one foot in front of the other each day and give me a shred of hope that I could get through this.

Over the past few months I have connected with lots of autism moms.  Never have I connected with so many people who get it.  Who knew there was a whole world of autism bloggers I had yet to discover?  Apparently, a lot of people did and I have been living under a rock.

So on to my idea...

Every Friday I am going to feature a blogger who may have struggled a little, or a lot, but keeps on trucking.  If you have experienced any type of trial whether it be loss or infertility or illness or have made it through divorce or a high risk pregnancy or are raising a special needs child or if you have done something crazy like trained for a marathon while taking care of 10 kids or had a baby when everyone said you were too young or too old I want to hear about it.  I have no formal list of what qualifies so if you feel like you made it or you are still making it let me know.  

My goal is to connect bloggers to other bloggers who might see a glimpse of themselves and know that they will be all right.  Plus there is nothing like new followers who walk the same walk and a new button too.

Here's the rules:

-Send me a blog post that screams YOU.  The post does not have to tell the story of your struggles, in fact, I would rather it not.  Just share something that you are proud of or that gives readers a feel for your blog.

-Email a direct link to the post you would like featured and include a description of your struggle/feat,/obstacle/magical powers in the body of the email.  Send it to fourplusanangel@gmail.com and I will feature someone new each Friday.

Oh and I know what you are thinking, if you are wrestling with that uncomfortable feeling of patting yourself on the back, look at it like you are sharing your I-made-it-through-so-you-can-too story with someone who just might need to hear it or if you feel like you are not quite comfortable calling yourself an expert yet, that is okay too.  I guarantee there is someone out there feeling like they are ten steps behind where you are right now.

Hope to hear from you!

Small Things Saturday

</span></span></font></div><div><font class="Apple-style-span" face="'Lucida Grande'" size="3"><span class="Apple-style-span" style="font-size: 11px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif; font-size: 14px; line-height: 24px; "><span class="Apple-style-span" style="font-family: 'Lucida Grande'; line-height: normal; font-size: 11px; "><a border="0" href="http://www.thewatson6.blogspot.com/" target="_blank"><img src="http://i364.photobucket.com/albums/oo84/mcpahash/leaf-1.jpg"/></a></span></span></span></font></div><div><font class="Apple-style-span" face="'Lucida Grande'" size="3"><span class="Apple-style-span" style="font-size: 11px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif; font-size: 14px; line-height: 24px; "><span class="Apple-style-span" style="font-family: 'Lucida Grande'; line-height: normal; font-size: 11px; "><span class="Apple-style-span" style="font-family: Verdana, sans-serif; font-size: 14px; line-height: 24px; ">

This weekend my Small Thing to appreciate is our Saturday plans.

Tonight Ashlyn is heading to a holiday party for teens on the autism spectrum.

We are both looking forward to an evening of blending in.

An old picture but one I love... I'm running out of Ashlyn pics.  She HATES getting her picture taken and sitting on her to take a pic does not usually make for a good shot.

Happy Saturday,

Limit Pushers

The bill to mandate insurance coverage for people with autism in Michigan did not make it.

After a long tireless fight, it did not pass the Senate last night, or this morning.

I'm disappointed and feel like we just took two steps back AGAIN but I am also I'm grateful.

I spent last evening, along with most of the autism parents in Michigan, checking face.book, twitt.er, the Michigan government sites and text messages waiting for news from the parents who have given up days and months and years of their time to get this bill passed.  I have to say I have been humble by their efforts.  The amount of time they have spent on this cause not just for their children but because they saw the bigger picture and knew this was needed for the many children of Michigan.

I'm not sure why it has taken me this long to fully grasp this but over the last year or so I have finally understood just how much work has been done by other parents of special needs kids before me to make my life easier.

There is no doubt in my mind that the fact that Ashlyn has the opportunities she does is because of outspoken parents who pushed the limits of the past and the reason my preemies benefitted from so many advances in neonatal care is because of the many preemie parents before us.

Many years of limit-pushing ago

I made my phone calls and sent my emails for this insurance bill but I did not make a trip to Lansing or spend my days with lobbyists and without the many parents who did, this bill would never have seen the light of day.

In general, this is a crappy day for parents of children with autism in our state.  Autism is not the easiest diagnosis in the world to swallow and then to find out that your state is not willing to give you a helping hand?  Well that is a little bit of a slap in the face.

The one thing that we can take comfort in is the fact that if they won't help, there is always another parent out there who will.

So if you are trying to keep up the strength to advocate for your child in any area, whether it be to get them included in general education, for a medical test your gut is telling you is needed or just to get that grade changed on the history test you know they should have passed don't give up.

You are not alone and there might just be a parent or two waiting to walk on that road you are paving.

The Up Side of Autism

I have been around a few typical teenagers lately and have to say that I think there just might be a few things that could be considered perks to having a teen on the autism spectrum...

1.  Fifteen years and counting and I have not had to endure a single boy band concert... except when my own mother, as part of her motherly penance, took me and my group of big haired friends years ago.  But so far so good in Ashlyn's case.  She has no interest and if she did, she would need ear plugs and industrial headphones just to step inside anyway, defeating the purpose of going in the first place.

2.  Fashion is a non-issue.  As long as it is comfortable she does not care.  I have ventured into one or two of those stores where you come out smelling like you dipped your body in their cologne but I think it was more for me than her.  For the most part, she could care less what she wears, what you wear, what I wear.  It's nice.

3.  While there may not be an over-abundance of eye contact going on over here it is not because she is staring down at a phone, texting someone who she would much rather be talking to than me, until her fingers fall off.

4.  You never have to wonder what she is thinking.  It just comes right out.  She will tell you if you are late, early, too loud, in her way, smell bad, you name it.  There is no beating around the bush and actually you can't say "beating around the bush" because if you do you will be told that that does not make sense.

5.  Curfews are a non-issue.  I remember the days of negotiating with my own mom and also the nights of trying to tiptoe in the house after the day of negotiating proved unsuccessful.  I can happily brag that I know where my teenager is every Friday and Saturday night.  If she is pulling an all-nighter it is because someone forgot the melatonin.

6.  We are saving on car insurance and on a million arguments over why she can't borrow the car.  For a little while we wondered if driving may be an option someday but Ashlyn put the kabosh on that when she remind us that she does not know her own strength so would "only push the gas pedal all the way down."

7.  I am still her friend.  I have noticed that there are other people, usually around the age of 15, whom she would much rather see than me but for the most part, time with Mom is still on her list of things she can tolerate and I can pretend that I am cool until the rest of my kids become teenagers and tell me otherwise.

8.  She is affectionate.  We never hit the don't-even-breath-on-me phase.  She will hold my hand, dish out the hugs and would no doubt sit on my lap with the rest of the kids if we weren't the same size and everyone could fit.

Ashlyn and her Papa at her first black tie event

9.  No drama.  Okay, we have our fair share of drama but it is more of the you-screwed-up-my-schedule or the-bus-is-late variety not that mean teen girl drama that occurs in every other household.  There is no catty, she said this and her boyfriend did this, going on over here which leads into my final and favorite thing about my teenager with autism...

10.  She is kind and innocent.  There is seriously not a mean, malicious bone in her body.  She will treat you the same whether you are rich, poor, famous, homeless, 2 years-old, 90 years-old, can't speak, can't shut up, she does not care.  She will never speak behind your back, whisper about your new 'do or spin the truth.

What you see is what you get and in an all-is-right-in-the-autism-world moment I know that I have a lot more to learn from her than she does from me.

We'll take the vacation package

I have always written about how amazingly well Ashlyn does.
And she does.

She can talk you in circles, debate like no other, just got a 3.5 GPA on her first high school report card and is the kindest, most pure-hearted person you will ever meet.

But autism can still kick our butts.

I say "our" because if it is kicking her's it is kicking mine.

There are days when the computer is running slow or she forgot a pencil for History class or the bus does not come on time and she just cannot bounce back and she is old now and the sensory toys and calming games don't have any pull anymore and I feel helpless.

Yesterday we had a "drop whatever you were going to buy and get out" moment for the first time in a long time.   For a brief second my mind drifted.


Wow, I forgot about this.  This hasn't happened in ages, we've come a long way.

The second that thought was over my butt kicked back into gear because I had a red faced, possible steam coming out of the ears, teenager rocking back and forth at my side and a nice little crowd of shoppers, who needed to just go back to looking down at their prospective shoe purchases, on my hands.

This was no time for reflecting.

We got to the car, the walk in the cold air softening her meltdown, and she was so sorry and upset and all I could think about was that there is no vacation for her.  No matter what she does that darn autism can creep up, overwhelm her and the rest is history.

I would love to give her a break.

Cry mercy once in a while and give her a chance to sail through social situations, laugh at an unexpected surprise or manage a day of high school hallways stress free.

My magic wand does not seem to be working though so for now I called her out of school for the day and gave her some time at the safest place to be a teenager with a case of autism that won't leave you alone...

home.

For the most part, we can manage a grocery store without having to abandon a full cart in aisle five and can totally enjoy a trip to the mall (as long as I don't make her try anything on and no toddlers are in tow), but there are a million autism moms out there who are at a loss right now because they don't make shopping carts big enough to buckle in an 8 year old and the tile pattern in the mall floor is way too repetitive to get their 5 year old to actually veer into a store.

If you know one offer to help.
Check on their stock of groceries before you head to the store or offer to babysit once in a while.
They may not even know how much they need you.

A new guest

I mentioned last week that I have recently connected with a great group of bloggers who are all blogging under "special circumstances."  Quite a few of us have children with autism and Amanda, an amazing writer and mom of two, offered to write a guest post for me today on parenting her son with autism.  

As I read Amanda's post I realize we differ in our views because, even though I do not see autism as a sickness or something that needs to be cured I do feel that an overload of toxins (including vaccines) declared war on my daughter's developing nervous system a long time ago and we have been working hard to reverse that damage for quite some time with great results.  I'm sure that as you read this you are either shaking your head in agreement or in disbelief.  And that is fine.

I have chosen the road that is best for us and Amanda has chosen the one best for her family.

I am so glad to have met Amanda and that she wanted to share a little bit of her life here.

There are so many of us working our way through the world of autism, our journeys are as much the same as they are different.

Whether or not Amanda and I are always sharing the same map I consider myself lucky that our paths have crossed...

Loving Lampposts, curing autism, and the dark

There's an incredible documentary about autism, “Loving Lampposts,” directed by Todd Drezner, the father of an autistic son. The documentary is about the ongoing debate in the autism community: Is autism a sickness that we need to cure? Or is it a variation in the human brain and simply an alternative way to think?

The “recovery movement” is made up of those individuals – doctors, parents, therapists – who believe that there is an “epidemic,” which may have been caused by toxic vaccines, insecticides, or other environmental toxins. They look at autism as a sickness that needs to be cured or healed or from which a victim needs to recover.

The “neurodiversity” movement, by contrast, preaches against focus on cures and treatments, pushing instead for greater acceptance and support. Many autistic adults find themselves in this group, apparently, rejecting the idea that they are sick and need to be cured. That doesn't mean they don't recognize the challenge of living with autism in this world, but they would rather see more attention on embracing people with differences, rather than trying to “fix” them.

On most days now, I'm happy to consider myself a member of this second group. I do believe that autism is a fundamental part of who my son is. While the condition is to blame for many of his challenges in life, such as his communication difficulties and troubles with coordination, it is also, I believe, responsible for many of his remarkable gifts: He can easily memorize complete books, movies, TV shows. He sings pitch-perfectly and has a perfect memory for tune. He has an amazing sense of rhythm. I don't want to cure him of who he is.

But occasionally I experience what St. John of the Cross described as “the dark night of the soul.” These hours seem to last an eternity, and most frequently occur when I wake up in the middle of the night – maybe Willow needs a diaper change or, more often these days, Billy wakes us up over the baby monitor with a startlingly sudden verbatim rendition of the dance party sequence in “Charlie Brown Christmas” – and I find it nigh unto impossible to get back to sleep. During those creeping hours between about two and five a.m., I wonder, “Couldn't we just cure a couple of things? How can I recover his ability to sleep?”

And then I start planning out the next day, thinking about all the ways I can use every single moment to teach him something new. Every single moment. I'm petrified by the sense that time is slipping away from me, that a “teaching moment” might slip through my fingers, and it'll be lost forever. As though he has one moment on a Tuesday afternoon to learn how to spell “cat” and after that, the moment is gone.

It's the middle of the night. I get a little crazy.

Case in point: We had just come off a week of “stay-cation.” That's what it's called apparently when you stay at home and act like a tourist in your hometown.

We had a great week. We went to the Mary Brogan Museum, the park, the movies, the bowling alley. We tried to find “teaching moments” everywhere we went.

At the bowling alley, I showed Billy that his ball had the number 8 on it, and mine had a number 15. Each time the balls came out, he would find the number 8 or help me find my ball or Daddy's ball. It was great.

A couple of nights later, it's 3 a.m. and I'm thinking about the bowling trip. And I'm thinking about ways I could have made it more educational.

“The shoes!” I think. “There were numbers on the shoes!”

I couldn't believe I had missed that. I could have taught him his shoe size. It was printed right there on the back of his shoes. We could have talked about how Daddy's size was bigger because his feet were bigger. We could have learned sizes and “big, bigger, biggest” and which number is larger ... I could have kicked myself for missing it.

Like I said, it's 3 a.m., and things get a little out of perspective.

“I have to remember the sizes next time!” I tell myself. “How will I remember?” And it occurs to me that I have to leave myself a note. Otherwise, I won't remember by the morning, much less by the next time we go bowling.

So I sneak out of bed and downstairs at 3 a.m. to write myself a note.

And that's how I came to find Dave, the next morning, standing in front of the fridge with a puzzled expression on his face, holding a carton of milk in one hand and a Post-it note urging him, “DON'T FORGET: NUMBERS ARE ON SHOES!!!!!!!” in the other.

He doesn't even ask. He just sticks it back to the fridge with a magnetized letter “Q” and takes his milk to the table.

Billy comes to the table looking beautiful and sleepy-eyed and announces, “Cereal! With milk!” After a moment: “Please!”

And I look from Billy to the fridge covered with my crazy notes to myself and I wonder seriously about which one of us is dealing with the bigger issues.

Neurodiversity it is.

"Life is a spectrum," and Amanda Broadfoot blogs about it at www.LifeIsASpectrum.com

Blog Hop

This is my first week participating in the Special Needs blog hop.  Each week a question or task is posted and this week's is:

Introduce yourself and your blog to us
So here it goes... my name is Jessica and I am a wife and mom to 5.  My oldest daughter Ashlyn is 15 and has autism and then I have triplets who were born at 28 weeks.  Our daughter Hadley passed away when she was two days old and my surviving triplets Parker and McKenna have done very well despite their prematurity.  McKenna has some remaining health issues but nothing we cannot handle after the emotional roller coaster of the NICU.  After the triplets we had a little surprise, Sawyer, who is now 16 months old.  Needless to say we are a busy household and blogging has become one of my few outlets.

I try to blog honestly about life after the loss of my daughter, the ups and downs of autism and the general chaos of life as a completely outnumbered stay-at-home mom.

Thanks for stopping by!

The Autism Story

When Ashlyn was about three months old it became clear that there was not a parenting book out there that could help me.

She did not meet her milestones.  Well she did, just months, sometimes years, after they were supposed to come.  We went from doctor to doctor.  Autism was not the buzz word that it is now. and with severe gross motor delays, every doctor we met ordered x-rays and blood work and testing and testing and more testing.  Some thought is was cerebral palsy, some a genetic disorder.  No one really knew where to put us.

In the meantime we spent two days a week at occupational, physical and speech therapy (by today's standards not nearly enough) and I waited for a diagnosis with a constant tug in my mind that they were all missing something.

At three years old Ashlyn could say cheese and hot dog, she liked people but only adults, she hated the grass and the sand and tags in her clothes and getting her hair brushed and bright light and noise, but no one said autism.

She started a special education pre-school 5 days a week and she thrived.  There were kids in the class with classic autism and I did not see my daughter in them so I thought that must not be it.  Not knowing, at the time, that autism comes in as many shapes and forms as there are kids with the diagnosis.

We plugged along with no "label" just piles of discouraging testing from the school countered by amazing gains the longer she was in a classroom setting.

Eventually I learned of a nationally recognized autism expert who just happened to have an office close to us.

I drove there thinking I already know what he is going to say, I just need him say it.

He did not evaluate her the way the million doctors of the past three years had.  He brought in a doll house and wanted to watch her play.  She filled the doll house, with puzzles and books from the corner of the room.  Then she took them all out and proceeded to put them all back in again.

He looked at me as if there was never any question.

I will always remember that ride home.  I felt an odd sense of relief that we finally had a diagnosis and could move forward, but was also scared out of my mind.  Getting an autism diagnosis is like staring into a black hole.  No one can tell you what your child's future will hold.

Ashlyn is 15 now and has far surpassed any future I had imagined for her.  If you were to meet her you would not see autism unless you looked for a minute or two and knew what you were looking for.  She will talk your ear off, is great at math and can tell you all you ever wanted to know about cooking, her bus route and autism.

In all seriousness, the road to get here has been rocky and we aren't "there" yet, wherever there may be.  Every time I think we can coast for a bit we hit a bump and I fall off.  I worry about what is happening, why it is happening and what we are going to do to keep it from happening again.

She doesn't.

Ashlyn just keeps on going as she always has.  Never knowing she has a story to tell at all.

Change, change, change

We have had lots of changes in our house lately and I have had a few requests for updates on various subjects so here we go...

Toddler beds:

We put the beds up.

They played.

McKenna repeated "don't want to sleep in a big girl bed" 3 million times.

Mark put her crib back up.

Nights are great but short, naps are nonexistent.

Yesterday I entered their room to find Parker climbing McKenna's crib while she had him in a headlock and he had her by the hair, both screaming themselves hoarse.

The sibling love I had always envisioned.

Parker in his big boy bed (railing followed the next day)

McKenna:

McKenna has been doing pretty well.  She has slowly rebounded from her health scare in the spring but has never returned back to full strength.  She goes to physical therapy weekly and has braces on her feet and ankles which she tolerates really well (the fact that they are pink helps immensely).  We have also noticed that whenever she is sick or overtired that her muscle weakness along with some OCDish behavior come back which concerns her doctors but at this point we are taking a little vacation from all of the medical tests.  

The poor girl has been through enough.

High school:

Ashlyn is doing the best that Ashlyn can.  The adjustment to the expectations of high school have been tough to say the least.  She goes to school each day trying her hardest and that is all I can ask for.  

In the meantime I will continue to dream about winning the lotto so that I can create my own school that  works for her and the many other kids with autism who struggle through their education.

Ashlyn on her way to scoring a well-deserved goal at her soccer game.

P.90x:

I am on week 4.  I love the program and have seen results really quickly BUT my exercise schedule depends on the fact that my children actually sleep (see "Toddler beds").

I may be on week 4 for a while.

Lastly, I put the kids in a Mommy & Me (& Me & Me) class and they did great.  I was thrilled to find a class that would even include Sawyer.  They all surprised me with how well they did and the teacher kept commenting on how well behaved they are.  They were only good because they were in shock by all of the activity (we don't get out much) but I took the compliment and ran.  I'm looking forward to their weeks to come in the class, hoping Parker and McKenna will come out of their shells a little bit and that Sawyer will stop eating the glue sticks.

The best picture I could get of the three of them on their first day of "school"

My Fighter

The other day Ashlyn posted one of those post-if-you-agree-with-this status updates on face.book and when I saw it I held my breath for a minute or two.  

This is what it said...

Children with special needs don't have an illness, so there is no cure and it's not contagious. They want what we all want - to be accepted.

On one hand I was exploding with pride because she posted this, because she is her own best advocate and she is proud of who she is.

On the other hand I was scared out of my mind that she had just put herself out there, that she was "friends" with all kinds of middle-almost high school aged kids, and kids aren't always nice.

So I checked her status every two seconds a little while later for comments and the goosebumps began.

A few family members commented about how amazing she is, which of course, I already know :) but then a girl from school replied with: 

I just love you Ashlyn :)

And I knew we had made it.

My biggest fear, as Ashlyn has matured and the need to fit in and be like her peers began to creep in, was that Ashlyn would not feel like she belongs and would not find a place for herself in the teenage world.  

But she has.  She is who she is and the community we live in loves her for it.  

So when I sent her off for her first day of high school today I knew she would be just fine.  She has the support of our amazing family but more important to her right now, she has an army of teenagers who have grown with her over the past few years and will remind her to bring a pencil or open her locker or point her in the right direction even if they may have done it a zillion times before.  

There is no doubt that Ashlyn will be busting her butt to keep up in high school but I know she will surpass everyone's expectations as she always does.  I have watched her overcome every challenge in front of her with leaps and bounds and I look forward to watching her tackle the next four years with the same amazing spirit she has used to triumph over the last 15.

Ashlyn has what her face.book status said.

She has been accepted.  

She does not need a cure.
The only thing that is contagious is her attitude.

She has fought autism with a smile for many years and has always, always won.

As her mom, I will forever wish that she did not have this battle but am eternally proud of the fighter she has become.

Ashlyn and a few members of her "army"

Dreams

I hope your dreams take you to the corners of your smiles, 
to the highest of your hopes, 
to the windows of your opportunities, 
and to the most special places your heart has ever known.
-- Author Unknown

Ashlyn completing 8th grade with honors

An Autism Story

Yesterday, Ashlyn and I had a great car talk.  We had a long ride home, the little ones where falling asleep and I can't remember how it came up but we started talking about what she feels people do not understand about her.  She amazed me, not for the first time, with how well she is able to articulate how it feels to be her.  Here was her list...

1) I just want to be like everyone else 

2) I listen the best when I don't have to look at you

This is the one that blew me away...

3) My art teacher says "Draw what you know not what you think.  Don't draw what you think a tree looks like, draw what you see when you look at a tree." That is how I am, don't tell me something if it is what you think, only tell me it if it is a fact.  It is too hard for me to figure out the other stuff.  

There have been a million times when Ashlyn has gotten upset over something not happening like it was supposed to and I always thought it was just the change in schedule and never thought about the deeper meaning of why.  The more we talked about #3, she helped me to understand that it has so much more to do with needing things to be concrete and factual.  So telling her "I think we might go to the park" is like nails on a chalkboard.  Either we are going or we are not, she does not need the fluffy stuff in between and I can appreciate that.

The list continued with things like "I don't like cleaning my room" and "I want to be on the honor roll" and other less philosophical statements but I thought that what she started with was amazing.  I wish there was someone like her for me to talk to when she was younger and could not articulate what it was like to live in her world.  Teenage Ashlyn could have helped me out immensely with little Ashlyn.

I have been thinking about our conversation all day and about the journey we have been on that has gotten us to where we are today, a few weeks shy of her 8th grade graduation.  Ashlyn and autism have taught me so much.

So I am adding this to my long list of things that Ashlyn has taught me...

There is no perfect road to follow and no matter what path you take it is a long, bumpy, exhausting ride.  But there will be a day like this, when you feel the rewards of all of your travel and you can look at the only tour guide you've ever had and thank God that they are able to read you part of the map.

Soccer practice

The kids and I had a blast at Ashlyn's soccer practice tonight.  I was hoping they would not catch a glimpse of the slide until much later in her practice but McKenna zeroed in on it before we were even out of the car so off we went, Ashlyn in one direction and Parker, McKenna, Sawyer, the stroller (loaded with enough gear to keep us living happily on a deserted island for a good week or so) and I in the other.  

I'm not sure I will do that again without an extra set of hands but regardless everyone had a great time and we will all sleep good tonight.

Speaking of soccer practice, I have to say for the millionth time how much we love Special Olympics.  Ashlyn is busy year round with activities and has met an amazing group of kids and volunteers.  Someday she may even like it enough to let me snap a picture or two of her in action :)

My Teenager

Since today is the 27th and Ashlyn was born on the 27th, this day makes me officially one month closer to having a 15 year old. Ugh! I really cannot believe that she is growing up so fast.

I think that I was just 15.

I wanted to post a cute pic of Ashlyn today but, if you know Ashlyn, you know that she does NOT like to get her picture taken. I figured the best thing I could do for her 14 years and 7 months after she was born was to not make her pose for a picture.

She is running track for Special Olympics and loving it. I always take one or more of the little ones to her practice and they run her "cool down" lap with her. It is so sweet to watch her be a big sister. Twelve years as an only child can make for a lot of adjusting but she has done so well and secretly loves our new craziness just a little bit I think :)

Did I mention how proud I am of her?

What will she eat?

Today's picture is very fitting for our day

McKenna spent hours in these sunglasses after she found them under the abyss of our couch and wore them right through her favorite meal of bagels and cream cheese. So the reason this picture is so fitting is because it was taken before her doctors appointment this afternoon.

The one where we got all of her test results back.

The one where they told us that she is allergic to wheat

and dairy

and eggs

and we need to see an allergy specialist because the list is probably even longer.

No more bagels and cream cheese for my little peanut.

We have been in the special diet world for a while because of Ashlyn. She has been casein free since she was 8 (with great results) but McKenna's allergy is a little different. It is an actual allergy where as Ashlyn's is a food sensitivity that we manage to help decrease symptoms and behaviors related to autism. Ultimately two different problems with the same fix.

Am I making any sense at this point? It's late and we don't sleep in our house.

So now add in no wheat and no eggs and I am at a loss for what to feed Ms. McKenna, kicking myself for getting rid of my bread-maker and wondering how I am going to keep the never ending food-sharing that goes on around here at bay. Poor Parker, his wheat, dairy and egg days are probably numbered too.