Memories, Miracles, and a Little Bit of Magic

Derek at age 2

Derek's MDT is on Tuesday.  What does that mean?  It means that his Multi-Disciplinary Team reevaluates him for autism.  No. Big. Deal.  Except it is.  It means everything in terms of the services he receives in school.  I'm not worried, because I know Derek will still qualify.  But it's hard to hear that your child is behind his peers--even when you know it's coming. 

It has been 3 years since Derek was officially diagnosed.  1095 days.  It feels like a lifetime.

I cleaned out Derek's therapy room today.  All I really wanted to do was vacuum and straighten the room up.  90 minutes and a trip down memory lane later, the room is definitely clean...

When I went into the room, I was in a rotten mood.  I wanted to take a nap, but that was out of the question.  So I dumped an entire toy box on the floor and started shuffling through it.  The first thing I found was a plastic blue circle.  It stopped me in my tracks.  I was instantly reminded of a day 3 years ago when I was trying to help my son fit different shapes into a shape sorter.  A purple cross.  An orange square.  A red triangle.  The circle was the only shape he could get to fit through the hole.  Suddenly, I couldn't breathe.  A lump formed in my throat.

I looked around at some of the other things in the room.

There were wooden puzzles on a shelf.  You know, the kind made for toddlers.  My son struggled through them all--especially the alphabet ones.

PECS (Picture Exchange Communication) boards were propped against a wall.  there was a picture of Cheetos and a picture of his favorite fire truck...we'd used those for rewards...I remembered screams and smiles once Derek finally figured out what we wanted from him.

By now tears were coursing down my cheeks.

If you are wondering why I cried, it's because my son has come SO FAR.  Unlike most children, learning didn't come naturally to Derek.  He didn't pick up on language naturally.  We had to teach him language with flashcards.  We had to teach him how to PLAY.  We had to teach him how to turn on a LIGHT SWITCH.  We had to teach him everything. 

In three years, Derek has somehow figured out a way to not only survive, but to THRIVE in a world that he is not comfortable in.  I never expected him to be talking at all, but he is.  I consider him my miracle.  He's even starting to put sentences together.  He's not writing yet, but I have high hopes.  He's interacting with his brother.  His eye contact is amazing.  And best of all?  He's got a SENSE OF HUMOR!!!!  He smiles and laughs and tries to get others to laugh.  I am absolutely head-over-heels in love with this child of mine, and I could not possibly be more proud of him.  His spirit is magical, and I wouldn't change a thing...

Derek now.

 

My Son the Superhero

I have mixed feelings about October.

On one hand, I love it.  I love fall and everything that comes with it.  The leaves turning brilliant shades of red, orange, gold and brown.  The cool, crisp air.  Pumpkins.  Crunchy apples.  And best of all?  My son's birthday. 

Derek was my Halloween baby.  When he was born, I was thrilled.  I thought that as he grew up, he'd LOVE having a Halloween birthday because he'd get to dress up at school and have parties on his special day. 

Halloween 2010--Derek refusing to wear the hat.  This was the last time I got him to wear a costume.

But I never expected Derek to be autistic. 

I see people post pictures of their children in adorable costumes and I can't help but be jealous. 

Derek hates costumes.  He can't stand wearing them.  Make-up or a mask on his face is out of the question.  So is a hat.  Each year has gotten progressively worse.  Last year, he refused to wear even a fireman's jacket made of fleece.  So my son went trick-or-treating as...you guessed it...Derek.

Derek doesn't understand the concept of trick-or-treating either.  He tries to go into people's houses.  And he doesn't like the candy.  He usually lasts about for about 10 minutes, much to the dismay of my other son--who LOVES Halloween. 

As a parent of a child who has a hard time with Halloween, here is a little advice for all of you who DON'T have children on the spectrum:

If a child doesn't say trick-or-treat or thank you when you give them candy, cut them some slack.  Maybe the child is nonverbal. (Derek never said a word last year.  I spoke for him.)
 
If a child searches through the bowl of candy, don't automatically assume he/she is being rude.  My son can't tolerate certain textures and will only eat smarties and suckers.  He doesn't know that it's rude to search through a bowl.

If a child tries to enter your house, don't freak out.  Especially if the parent is doing everything they can to control their child and is apologizing profusely. 


I know many of you are probably asking yourselves why I bother taking my son trick-or-treating at all.  Honestly?  I don't know.  Because it's his BIRTHDAY and I don't want to deprive him of thngs other kids get to do.  I also do it for his brother.  Tyler shouldn't miss out on things just because he has an autistic brother.  I also have hope that one day Derek will WANT to dress up. 

But this year?  I'm letting go of all expectations.  If Derek doesn't want to wear a costume, I won't make him.  He can go as himself. 

Because let's face it-- Derek is pretty awesome.  MUCH cooler than Batman or Spiderman or Luke Skywalker or any other person he could dress up as.  My son IS a superhero...

I Can.

I try to be a pretty positive person, but the last few weeks have gotten the best of me.  Why?  Because Derek's tummy trouble's have taken a turn for the worse. 

Throughout his life, he's had some issues.  He's been lactose intolerant since birth.  When I tried to switch him to milk at age 1, he ended up with explosive diarrhea.  So I went with soy milk instead. 

Then, of course, were the texture issues.  Derek never really got past the finger foods that toddlers eat.  He eats primarily dry, crunchy foods.  No pizza, no pasta, not even bread.

And then there was the vomiting.  Every once in a while, he'd have unexplained vomiting spells.  They happened rarely, so I thought he'd just caught a bug.  Now, I'm not so sure. 

The vomiting has increased 10-fold in the past year.  I've been keeping track on a calendar.  Last school year he had 7 different episodes.  He had a couple this summer, and this school year?  He's already had FIVE. 

I started keeping a food journal, thinking it was a food allergy.  And since the episodes decreased over the summer I thought I had it figured out.  I thought Derek was allergic to something in multigrain foods--because every time he ate multigrain Tostitos or Cheerios, he got sick. 

But he hasn't eaten those in months, and the past few weeks have been the worst yet.  Every single time, it is the same.  At about 3 a.m. (Derek's witching hour) he wakes up and starts hurling violently.  If I'm lucky, I get him to the toilet.  He continues to vomit every 10-15 minutes until there is nothing left in his stomach.  And I mean NOTHING.  Somewhere in the middle of all of it, it turns to diarrhea, so then I'm left holding an almost 5 year old child up on the toilet while he spews all over me (I try to catch it in a towel, but that rarely happens). 

Sounds like a food allergy, right? 

Last week he got sick on 3 separate nights, and one night he threw up blood.  Ummmm, not good.  Time to call the doctor.

I've resorted to having Derek sleep next to me, so that I can get him to the bathroom if an "episode" hits.  And once it starts I just keep him in the bathroom. 

I'm a nervous wreck.  I can barely sleep, because every time Derek even stirs, I wake up. 
I'm exhausted. 
I'm terrified. 
Derek's doctor's appointment is this week, and I don't know whether they will give him a referral to an allergist or check to see if there is something else wrong.
I'm worried about money, and how we are going to pay for MORE doctor's bills. 
I'm MAD that my poor son keeps having to go through stuff like this.  Hasn't he been through enough?  MRI's?  EEG's?  Dental surgeries?  Good grief.  He's not even 5!!!!

All I know, is that I can't do this anymore. 
Watching my child get THAT sick, night after night, is killing me. 
He screams. 
He cries. 
He doesn't understand what is happening.

When I was 8, playing with dolls and dreaming of motherhood, this is not what I expected.  I love my kids with every single fiber of my being, but I'll be completely honest...I'm hanging on to my sanity by a thread right now. 

Derek is down to eating 5 foods.  Gluten free pretzels, rice krispies, pears, apples, and natural popcorn.  Oh, and juice and soy milk.  THAT'S IT.  I'm going to have a severely malnourished son and there is absolutely nothing I can do about it right now. 

I can't do this. 
And yet, I AM doing it.  Because let's face it, if I don't--who will???
My son needs me now, more than ever. 
I will figure out what is making my son sick, even if I have to take my son to an allergist and get him "scratch" tested.  I'll even take him to a gastroenterologist if I have to.

Nobody said that being a mom was going to be easy.  Time to put on my big girl panties, drink some coffee, and get over myself.  I CAN DO THIS.

On Being an Adult

I would like to know when the turning point is.  You know?  The moment you actually become an adult.  I don't think it's when you turn 21.  And I don't think it's when you get married.  I don't think it's when you have children, either.  Because I know plenty of people who think parenting is a second job. 

I'm not sure when it happened to me.  I don't know what day I became an adult.  I think it happened gradually.  But suddenly I woke up and realized that I was putting my children's needs in front of my own.  Is that a normal mom trait?  But something has definitely changed.  I automatically think of my children when I make any kind of decision now.  The carefree, "crazy", spontaneous person I once was is long gone.  I see glimpses of her now and then, but the person I see in the mirror has witnessed things that have forever changed me.  And there is no going back. 

As I child, I longed to be an adult because of the freedom.  Yes, I said that right.  The FREEDOM.  I wanted no rules and to be able to do as I pleased.  I wanted to travel the world.  Funny--I don't take my kids farther than Omaha. 

I remember in college staying out until the wee morning hours and worrying about things like getting good grades and meeting "the man of my dreams."  I actually cried when I got my first B at the end of a semester.  Lord, if I could return to those days...

I've been taking care of a four year old with a 103 fever all day.  My son has been clingy, weak, and alternating been cuddly and frustrated all day.  There is nothing like fear and worry to make you take stock of what is important.  Health and Life.  They are oh, so precious. 

When you are a child, you don't realize how painful adulthood is going to be.  You don't realize just how many people that you love and care about are going to have to deal with things that are impossibly difficult.

A friend of mine lost a child to a heart defect.

Another has a child fighting cancer. 

Yet another lost a child to an unbilical cord accident--her baby had a heartbeat one day and the next day her baby was gone. 

And another friend had a baby with acrania (a birth defect where the skull doesn't develop correctly)-- my friend knew during pregnancy that her daughter would not survive outside the womb, yet she chose to carry her to term anyway for the chance to hold her daughter for a few moments. 

Two of my friends have children with cerebral palsy. 

And the number of my friends who have kids with autism?  Grows daily.

What makes someone an adult?  Is it compassion?  Is it being able to handle suffering and pain with grace?  Is it the outward appearance of strength when what you really want to do is fall apart?  Is it being able to multitask like a queen?  Is it juggling IEP meetings and packing lunches and keeping track of ABA schedules and getting the kids to school on time and somehow--SOMEHOW finding time to take a shower?  Because I guarantee you--every single one of my friends deserve a medal. 

I miss the carefree days.  I'm not going to lie.  I miss sleeping in and being able to drive to Denver on a whim.  But I wouldn't trade my kids for the world.  Not even when they are sick and vomiting all over me.  Even on the worst days, my sons reach up their little arms and want hugs.  They still call me "Mommy," which is the best title I've ever had.  I still get the privilege of being the most important person in their world--for at least a few more years.  I'm the one who makes "owies" go away with kisses, the one who chases away the boogieman at night, and the one who can comfort them when they are sick. 

I guess being an adult isn't so bad...

Subtle Reminders

Yesterday I tried to "get away" for a little while. 

The husband and I went to see The Dark Knight Rises in the afternoon.  We decided to go to the 3:40 showing to avoid the Saturday night crowd.  The theater was pretty empty.  I'd say there were maybe 10 people tops.  We got to sit pretty much where we wanted.  So we picked a spot smack dab in the center, a few rows up.  It was ideal.  Almost. 

A few rows ahead of us to the left, a mom and a daughter were sitting.  I think the little girl was maybe 8 or 9?  And she had an obvious disability-- I'm guessing cerebral palsy.  She didn't have complete control over her body movements and now and then during the movie (especially when she got excited), the little girl made noises and squirmed in her chair.  The mom kept shushing her, and I wished I could send her some kind of mental signal saying, "It's ok!!!  She's not bothering anyone! If someone says anything to you, I'll come to your aid--I'm in the club!!!" 

No, I do not have a daughter with cerebral palsy.  I have no idea what that mother goes through on a daily basis.  I'm sure she has challenges far different than the challenges I face.  But there is an undeniable bond between parents of children with special needs.  We have fought similar battles.  We know what it's like to be stared at in public.  We have been in more doctor's offices than we can count.  We worry--A LOT.  We cherish things that others take for granted--like walking, and smiles, and eye contact, and words, and being able to write letters...

No, the little girl in the movie theater didn't bother me at all.  I thought it was awesome the mother TOOK her daughter to see a movie.  I also loved it, because it reminded me of Derek.  Derek can't sit through a movie in a theater yet.  YET.  (I cling to the hope that someday he'll be able to do things like eat at a restaurant and go to a movie.)  And when the mom pulled the little girl into her lap at the end of the movie because she got squirmy?  I loved it even more.  The mom kissed her daughter's head and you could physically see their love for each other.  I had to fight tears.  Then when the movie ended, she carried her daughter out of the theater like it was no big deal.  We exchanged a few words, and I wished I could tell her about Derek.  Instead I just gave them both a smile. 

My brief "get away" wasn't all I'd planned--it was more. 

Changing the World

“Our lives begin to end the day we become silent about things that matter.” ~Martin Luther King Jr.

When I was in high school, I visited the Holocaust Museum.  It haunted me.  Years later, I still remember the pictures I saw and the stories I heard.  I remember toothbrushes and striped clothing, wooden bunks where people slept, and the smell of a boxcar that carried travelers to concentration camps.  I remember a huge hallway filled to the brim with pictures. 

But what do I remember most of all?  Shoes.  One of the rooms had a huge pile of shoes.  There were shoes of all sizes, that had been worn by children, Jews, Poles, Romanis (or "gypsies"), disabled people, homosexuals, and Jehovah's Witnesses.  The shoes were brown and of course, they smelled a little funny.  But when I saw the shoes, it hit me more than ANYTHING ELSE that the Holocaust was real.  It had happened.  Human beings, just like you and me, had worn those shoes.

Shoes at the Holocaust Museum

I've heard people say that the Holocaust can't happen again, that things have changed.  Or worse yet, they say that the Holocaust never happened at all. 

I read this on another fb page the other day and I HAD to share.  The page owner did NOT write it; somebody shared it on her page.  It scared the crap out of me.  In this day and age, ignorance and hate still exist.  I'm changing names for obvious reasons...


 Posted on the wall of Single Mothers who have Children with Autism

So-and-so wrote:

Can I share this with you guys? Enjoyed interviewing someone today for a nanny. She seemed really nice. Toward the end, she said, "I feel like I can tell you this because John's* adopted and you won't be offended. My pastor and I have a theory that children with autism and other challenges are the children whose ancestors have committed gravely sins." I said, "I'm offended that you and your pastor are ignorant and feel sorry for the child you ever care for." Then I think I said WTF and other choice words. I don't remember much after that. It's all a blur. The position is still open.

Anyone else heard other bs "theories" like this one? I wanted to punch her.

*Name has been changed


Anyone who meets my son loves him.  He is beautiful and innocent and full of smiles.  The fact that there are still people out there who think like this terrifies me.  One person can change the world.  Look what Hitler did.  I thought about not saying anything about the above post, but it's not in my nature.  As Martin Luther King, Jr. said, “Our lives begin to end the day we become silent about things that matter.”

I don't blame this mother for getting upset.  Not in the slightest.  When it comes to Derek, I am a protective mother bear.  I see RED if anyone even implies that he is anything less than the wonderful human being I know him to be.   

I don't know how many of you remember what happened back in January?  There was a person trolling fb pages and stealing pictures of special needs children.  Then he was posting the pictures on his page and saying in the captions that these children should have been aborted.  He made one comment that cut like a knife.

Under the picture of a child with autism he wrote that the child was a "cum-stain that should have been aborted."

Obviously, words like this are not easily forgotten.  (I still don't think I've fully recovered...) 

There was a big uproar in the special needs community after this and many pages pulled their pictures in order to protect the families.  I DID NOT.  I gave families the option to NOT be in the project if they wanted, but I felt that if I removed the pictures, I was letting the person win.  My goal with this art project has been and always will be to make the world see that autism is beautiful.  

Having a child with autism is not easy.  Some days, it is the hardest job on the planet.

But I would not change things. 

I do not believe that Derek should have been aborted.  Nor do I believe that he is the result of some grave sin I committed in my past.  If anything, Derek is happiness and love embodied in a human
spirit. 

If one person can change the world, than maybe (just maybe) it's my son.  Maybe Derek will continue to improve and someday be verbal enough to become a public speaker like Temple Grandin.  Maybe he can make a difference.  Maybe he can be a shining light in a world of hatred (because let's be honest--Derek doesn't know HOW to hate). 

Maybe Derek can help make sure that there is never again a pile of empty brown shoes...

Time

I'll be completely honest.  I spent a good chunk of my weekend either swallowing a lump in my throat, fighting tears, or crying.  Don't get me wrong, I laughed a lot too, but today?  I'm exhausted and emotionally drained.

When I got married (almost 8 years ago), I had plans.  Lots and lots (and LOTS!!!) of plans.  No, I didn't want a white picket fence and 2.5 children and a dog or any of that nonsense.  But I wanted to be SUPERMOM.  I wanted to be like my parents.  Looking back, I realize just how incredible my childhood was.  My parents let me and my brother and sister explore so many different activities.  I was on the swim team.  I did gymnastics for a while.  I had piano lessons.  I think I even tried soccer and t-ball when I was really young.  We went to Disney World and the beach and out for ice cream.  I even remember getting up early to recycle cans with my dad.  My mom taught me how to sew and I learned at a young age how to make pancakes and eggs.  What does all of that equal?  Time.  TIME.  Whether we were in the car or spending time as a family--I didn't realize how lucky I was. 

So I wanted to be that kind of a parent too.  I wanted to be able to sign my kids up for sports and teach them how to do things and take them on trips.  I wanted to be INVOLVED in their lives, so that later on in life they could look back and say, "My mom was amazing."  Instead, I feel like I spend the majority of my time trying to get Derek to EAT or SLEEP or attempting to keep up with laundry.(Derek changes clothes at least 4 times a day because he can't handle it if he spills ANYTHING on himself and it happens all the time.)  If I'm not doing these things, I'm trying to figure out IEP's or stressing about bills or trying to keep up with artwork and keeping up with ABA schedules.  I'm not Supermom at all. 

Yesterday Tyler was the ringbearer in his uncle's wedding.  I love both of my boys equally and I wanted to see Tyler in all his glory.  He looked so grown up in his tux.  Derek and I watched from up above, where there were no people.  He did such a good job and I was SOOOOOO proud.  But Tyler didn't see me up there.  After the ceremony, he asked me, "Did you watch me, Mom?  I didn't see you."  The look on his face was full of hope.  I told him, "Of course I did, honey.  Derek and I were watching from up there."  And I showed him where we were.  Tyler instantly looked relieved, and it made me wonder how many times I've actually let him down by NOT being there because Derek had a problem of some sort.  I instantly flashed back to the first movie we'd tried to see--Winnie the Pooh.  Tyler had stayed with one of Derek's therapists and I'd had to take Derek home during the PREVIEWS.  And this is why I feel torn.  I want to be there for both of my kids.  And Tyler is just starting to notice that Derek is really, truly different.  I don't want to let either of them down. 

Pretty soon, Tyler will start asking me why we don't do the things his friends do, like go to Disney World for vacation.  Or why we can't fly to New York to see his cousin and his aunt.  Or why we can't even go out to eat at a restaurant.  (Unless you count McDonald's drive-thru.)  It's even getting hard to go shopping.  

It's easy to count the things we can't do and get discouraged.  But I prefer to think about the OTHER things:

We can go to the park across the street and climb UP the slide.
We can go to the pool and jump in the cold water over and over again.
We can eat ice cream until our bellies hurt.
We can have water balloon or squirt gun fights.
We can laugh and smile and play.
We can snuggle and watch movies under blankets.
I can tickle my children until they are giggling uncontrollably.

and most importantly...
I have two beautiful children, that are ALIVE.
I can touch them and hug them and tell them I love them whenever I want.  
I can give them my TIME.

(And now and then, I'll make sure to have "dates" with Tyler and go places with JUST him...)