Friday, November 7, 2014

To Moms from a Special Needs Mom; Regarding London

Dear Moms,
Yet another child with autism has been killed by their mother. This is such a travesty and could have been prevented. This hurts my heart to think this precious little boy was thrown to his death. The mother had sought psychiatric help after breaking down and was released and put back in charge of the care of her severely autistic child, which makes no sense to me. Our system is broken and there MUST be more services for children on the spectrum and more services to help families cope with raising children with autism and all of the challenges that entails. 
But as moms we can help too. If you know a special needs mom or you see one in passing at your child's school or you know one online, reach out to them. Having a child with autism can be a very lonely road at times and very isolating as you shy away from social gatherings for fear of your child's reaction. Holidays and family gatherings are hard and often avoided all together. Play dates are out of the question for most. Our children rarely have friends to invite to a birthday party. It is hard for us to go out with our friends or significant other, as finding someone capable of caring for our child is difficult. Reach out. Sometimes just being a listening ear could make a world of difference. This mother is not the victim, her child is the victim, but how many people did she come into contact with as she was spiraling down that looked the other way? Something to think about.

Wednesday, October 15, 2014

He isn't Rain Man, He's Superman; Getting Beyond the Stigma of Autism

I wish I had a dime for every time someone told me my son does not look autistic.  No, really, I would have a pretty hefty bank account.  I have heard it from strangers, friends and family.  I have actually heard more than once that I am lucky he does not act as autistic as some children with autism.  To some, this may seem like a compliment, but for me, I know too many amazing little people on the spectrum to think negatively when I hear the word autistic.  I see countless videos of my friends' children on the spectrum who are laughing and smiling and enjoying life.  Granted not every moment is easy or happy, but with or without autism all families have our challenging days and moments.  Before delving into the world of autism, my husband and I were guilty of believing these stereotypes as well.  We told ourselves many times that our son could not have autism because he smiled and made eye contact.  This is a very common misconception, which is perpetuated by pediatricians using that as the only criteria to diagnose autism and dismissing parents' concerns about their children.  We watched Mercury Rising and saw way too many similarities in our own child, but we comforted ourselves with the fact that our son talks, our son smiles, and our son looks at us.

Once we got the diagnosis, things started to make sense.  And yet the more I learned about autism, the more I saw that it presents differently in everyone affected.  All of my preconceived notions regarding autism flew out the window.  I used to hear people talking about a family with a child with ASD and I automatically assumed that family was sentenced to a lifelong hardship.  I thought "That poor mother, I am so glad all of my children are healthy."  

But now that the mother is me, and that is my son, and this is our family; this is what I want you to know: My child is not any less because he has autism, he is more.  Our days and nights might be hard sometimes, but that doesn't mean I'm miserable or always tired.  We don't shy away from our son's stims or obsessions, we embrace them and he amazes us everyday.  We are not in denial and are not ashamed to talk about autism, it is a part of him and despite its challenges, a pretty amazing part of him.

Anyone who has been around Evan for a small amount of time would not even know he has autism, if we are having a good day.  But make no mistake, years of intervention and therapy and hard work enable him to function as well as he does.  After about an hour, it is obvious that Evan is different.  Whether he is noticing a fly on the outside of the window from three rooms away and runs to talk to it or if he is rocking and chanting in the doctor's office to calm himself down; the differences are there.  I used to shy away from these differences, but lately I see how much it helps him regulate to rock or jump in public.  I would assume onlookers would rather he do that than lay on the floor screaming because he is overwhelmed by the fluorescent lights or the air conditioner humming.  So he rocks and I smile and we go about our day.  

While we were going through the process of getting a diagnosis, we happened to watch the movie Man of Steel.  After watching the following scene, my husband and I looked at each other and we were thinking the exact same thing.  Maybe this isn't a disorder we are dealing with.  Maybe our son struggles so much because he has a gift and does not yet know how to reign it in.  Maybe for Evan the world is just too big.

(Forgive the subtitles, it was the only clip I could find)

Imagine feeling too much, hearing too much, seeing too much, smelling too much every time you walk into a room.  That is life on the spectrum.  And as well as he does to cope with it everyday, there are days when all of it is just too much.  And those are the days we power through.  

But most days are full of deep pressure snuggles, tickles and a belly laugh that is out of this world, and pure joy when surrounded by the things he loves.  He is far from Rain Man.  He has autism and he is Superman.

Thursday, September 11, 2014

When the Dust Settles

So we are in our new home in our new state and the dust has settled.  We do not yet have everything in place, but I am quite confident that anything not yet placed or hung will remain in boxes until the next time around.  We actually have multiple lamps placed around the house that are still without lightbulbs and not plugged in.  They will most likely stay that way.  Seriously, who wants to buy light bulbs you can't take with you when you move again in less than twelve months?

The children are adjusting to their new schools (or trying) and their new climate.  Our oldest is pretty miffed that he was told we would play outside here more and as of yet, it's been too hot and too buggy to enjoy the outdoors a whole lot.  Our youngest just turned one and she seems content and oblivious to the new surroundings.

And then there is our three year old on the Spectrum, who is trying to adjust but does not yet seem to grasp the permanence of our move.  He often asks to go see our favorite places in the state from which we just came.  He talks about going back to another home and seeing his favorite therapists and teachers as though we could hop in the car and be at his old school in five or six minutes.  All the while he is meeting new teachers and therapists, all whom he seems to like very much.  Liking his new teacher and classroom have not made drop off any easier, though.  He is fine with going into the building and enjoys looking in all of the other classrooms, but he freezes up when we get to the door of his classroom.  All of this week he has thrown himself down in the hallway and then I pick him up and physically hand him over to his teacher.  She takes him in and closes the door.  He likes all of the children and is always smiling ear to ear when I pick him up.  I know the school is a great fit for him and his brother as they have been incredibly accommodating, but there is this obstacle we have to get past every morning before he can relax and start playing and learning.  I wish I knew what the obstacle was.  We discovered the bathroom that he hated and was terrified of had nothing to do with the transition or the process of going to the bathroom, but instead it was the room itself.  The bright blue on the walls, the subtle buzzing of the fluorescent light, or the shape of the room did not suit him.  When they took him to the bathroom down the hall he had no issues going in.

So, the school is learning him and all of his tics and likes.  He has started therapy at the school and behavior therapy at home, but is still on long waiting lists for outpatient speech and occupational therapy.  His speech therapy evaluation showed he qualified and needed once a week outpatient therapy, but then in the following paragraph said he was added to a waiting list and they would let us know when a weekly appointment is available.  This seems to be a game we will have to play each time we move and, frankly, I'm sick of it.  We are now looking beyond our city and hoping that we can get him in sooner if we make a twenty minute drive every week.

Many will ask, why go through the pain of finding providers and dragging him to therapies every week, he seems to be doing fine?  But we have seen what these therapies can do for him and his responses for speech, sensory and feeding have all been very concrete.  For the most part, even without Occupational and Speech therapy, he is maintaining and not losing very many skills, but he is not gaining at the rate he was last year.  He still tests developmentally between the ages of 2 and 3 when he is almost four.  I realize therapy is not for everyone on the spectrum and not all children respond to it, just as mine has not shown response or improvement when we have tried diet changes and other homeopathic methods.  Just as all children on the spectrum develop at different rates, they respond differently too.  I recently read an article written by a woman whose son has "beat autism".  She laid out a situation in which her and her friend both had sons on the spectrum that were the same age, both used ABA therapy using the same methodology and saw completely different results.  Her son overcame nearly all of his autistic tendencies while her friend's son regressed further into his own world.

There is much debate on the subject of autism.  There is debate about its cause and debate about its treatment.  There seems to be not only two camps, but multiple camps all making different claims.  There are those who do not look at autism as a disorder at all, but instead a gift.  There are those with children with more severe cases who are begging for a cure.  There are those who think autism develops in the womb, whether it be from environment or genetics, or both.  There are those who still swear that vaccines play a larger role than the CDC lets on.  There are those who think diet can change behavior. There are clearly more questions than answers, and our government and medical community seem to be dragging their heals on funding and research that could answer those questions.

The whys and hows of autism are incredibly important, especially if there is an exposure we are missing that is at the root of the cause.  But for our family, we are pressing forward beyond the whys and hows and onto the what next?  We know what works for our son and we will move mountains to ensure he has access to the therapy and instruction he needs.

And when you brush all of that away after the dust settles you have this perfect little boy that can floor you with his gifts, stun you with his smiles, and bring you to tears of laughter with his logic.  Beyond the daily struggles he plows through, there is this amazing intellect and sweetness; an excitement for the little things in life that cannot be matched.  While we still must meet the challenges of autism everyday, we are learning that we are along for a ride, and life is so much more enjoyable when you embrace the journey.

Wednesday, March 19, 2014

The Good, the Bad and the Unknown

I think anyone who is a parent knows that parenting can show us our best qualities and unfortunately sometimes our worst attitude.  I feel like being a mother I have experienced my strongest and my weakest moments.  I have decided that Autism Spectrum Disorder (and probably any special need) truly reveals the spectrum of the best and worst in all of us.  I find in our family it has taught us that we are stronger and more capable and more determined than we ever would have known had we not had to handle our situation.  I find in me personally having a child who is facing so many daily challenges has taught me that patience goes a long ways and frustration only hinders our routines.  My weaknesses in handling frustrating behaviors in our children are compensated for by my husband's very calm approach to parenting.  He is not at home coping with the daytime struggles, so when he gets home and sees me about to burst, he has fresh eyes to see the situation and a renewed tolerance level that has all but diminished for me by the end of the day.  This offers me a calming reminder to regroup before my motherly exasperation gets the best of me.  Of course, sometimes I bite his head off for offering up such reminders and I take it as criticism.  But I am thankful that in family at any given moment at least one person will be the levelheaded voice of reason that can restore the calm.

I think I have seen this scenario unfold in every family, especially if one parent stays at home.  But when I say these moments are intensified for a special needs family, I want to walk you through a day on the spectrum.  This is not an exaggerated example or a bunch of situations that have occurred over a few months' time, this is from ONE day, after which I did not feel it was a particularly bad day, but it was a day that made me think about how he and everyone we come into contact with are affected by ASD, for better and for worse.

Our day started at Five AM, he had actually slept the night before (which happens only about once or twice in a 6 month period) so he was up very early, but I still tried to lay down on the couch with him to get him an hour or two more of sleep.  By six he still had not fallen back asleep and my husband had gotten up for work.  He turned off our outside light, as he always does in the morning, but today was different.  Today our son was awake and saw the lighting in the room change.  This brought on an intense negative reaction.  "No, the light on!  No, the light on!"  We tried to correct the lighting back to the previous hue, but it was too late.  Then he just screamed, "No, the light off!  No, the light off."  Something so very simple, and I knew it was going to be a challenging day.  An hour of screaming and crying ensued.  Eventually he settled down enough to watch a show and eat his breakfast.

By the time he needed to get ready for Mom's Morning Out, he was in a decent mood.  Telling him we needed to get dressed though, was met with staunch opposition, and he claimed he wanted to stay home and go night night.  I have learned to just ignore these statements and get him dressed through opposition and sometimes kicking and screaming.  He alway enjoys preschool and Mom's Morning Out once he's there, so it's worth the morning struggle to get everyone out the door.

We pulled into the parking lot at MMO, it was full.  Ugh, I always dread when we cannot park in our normal spot.  As we pass where we would normally park he begins to scream.  "Go to school!  No, go to school!"  I try to explain to him that he still gets to go to school but we have to park somewhere different.  It doesn't matter, nothing I say in that moment will be processed.  He can only process what he is seeing, which is us passing by the school.  Even once we are parked, it is different, it is scary, it is unknown.  I know he will need to be carried today and he will not go in willingly since we will be using a different door.  I get out the baby's infant carrier and set it on the sidewalk, I have big brother go stand by her on the sidewalk and then I unbuckle him and pick him up.  It is amazing what we are capable of when there is no other option.  I pick up the baby in her seat (easily 22 pounds, plus a 15 pound carseat) and carry my boy (another 40 pounds) up the stairs and into the church.

Not just one, but two church secretaries see me trying to navigate the door while holding both kids and trying to keep the oldest out of the way.  They both jump out of their seats and nearly break their necks to assist me.  One of the secretaries knows us very well and always watches the baby so I can have both hands to get the boys to their upstairs classroom (a stroller might be more ideal, but our son is terrified of elevators and going into one brings on a panic attack).  She takes the baby into her office.  Once we get to the top of the stairs Evan lays down and covers his eyes.  He generally shuts downs for about the first 20 minutes of class.  He will close his eyes and sometimes cover his ears.  He has two wonderful teachers at MMO and a great one at preschool too.  One of his MMO teachers has been on this journey with us from the beginning, before we had a diagnosis or knew what was "wrong".  She and the director have worked with us to accommodate him and make the rooms and transitions less intimidating to him.  She pulls him off of me and ushers him to the Dinosaur Table.  I am not positive, but I think this new area this year with dinosaurs all set up to play may have been inspired by Evan and in a hope for him to have better days.  As I try to sneak away, I hear her talking to him (eyes still closed), "Look Evan, it's a T-Rex and a new dinosaur book!"  I know he is in good hands and that he will have a good morning.

Upon pick up, he is smiling and jumping and running circles around the big room.  I notice his shirt sleeves and collar are soaked.  It must have been a little bit of a hectic morning as the sleeves have holes chewed in them.  He often uses chewing on his clothes to calm him during stressful or overstimulating situations.

On to lunch, we attempted to dine in at a fast food joint as we had to go to an appointment that afternoon.  We always go to Wendy's, I can watch the kids closely while I am in line and it is usually pretty empty.  I looked through the window before parking and cursed under my breath.  There was a huge line and they are slow.  It didn't matter, the expectation for going to Wendy's was set once we turned on that street, a change in plans would have resulted in a horrific meltdown and I needed him in a good mood for his haircut (our most dreaded appointment ever).

So I sat everyone down at the booth and they were perfect.   The oldest entertained the other two and they all waited very patiently.  It dragged on, I was in line for ten minutes and I knew I had three little ticking time bombs over there, one who was especially explosive if things went south!  But they waited, they laughed, they sat patiently the entire time.  A little group of old ladies commented to me how wonderful they were being and what well behaved children I have.  I was beaming with pride for all of them, but especially for Evan.  If they only knew how many months of therapy and how much coaching it has taken for him to sit at a table and fight the urge to run in circles.

The boys were almost done eating when I realized the juice box I had ordered for Evan was the right brand but taller than the ones we use at home.  Oh NO!  This is going to be awful!  And it was.  He kept asking for juice to go with his food.  I showed it to him.  "No, wrong juice!!!"  I explained it's the same, the same color box, the same brand, it's the same!  No, it was too tall, it was not the same.  He started screaming.  I told him his dinosaur water was in the car and he could have it as soon as we were done.  "Yes, Dino water!" he wailed.  Well, no, we have to get done and go out to the car.  There was no reasoning or explaining at that point and the screaming was getting louder.  It's pretty hard to make a quick exit with three kids under 5.  I gathered up everything, while holding him and trying to calm him.  I could not walk over to the trash and then return to the table to get the other kids.  He would think we were going back to sit down longer and would flip if we change directions.  I had no choice, I had to carry him, the carseat with the baby and our tray so that we could do it all at once.

So that's what we did.  With him screaming in my arms and my other arm through the car seat holding the tray of food we headed for the door.  An older lady from a different table approached us.  She had been there the whole time, so she saw the great behavior and then witnessed the meltdown.  I thought she might be coming to help me with my tray.  "Wow, you have a pretty unhappy little boy on your hands there.  He must need a nap."

What do you say?  I will tell you what I wanted to say.  I wished I had an extra hand to punch her in the face.  Who would take all of the effort to get up and walk over to me in that crazy situation, make a stupid presumptuous statement and then turn to walk away without offering a hand?  What did that accomplish.  I wanted to say, "No, he does not need a nap.  He has not napped in years, hell the kid doesn't even need sleep at night.  He has managed himself so well this whole time and you are approaching me now, and getting him even more upset to make a statement that doesn't help the situation at all?"

Unless the situation is dyer and the person is especially rude, I do not play the autism card.  I do not even allude to the fact he has an issue.  I am always afraid it will sound like an excuse.  And really how much time do I have to make someone aware that he has autism and sameness is a must and the juice box was different and this messed up his world and correcting it takes time.  I guess I wish I could take the time to make people aware.  But in those hectic situations, his well-being and our safe exit is all that matters.  I smiled and said "Well, you know, they had the wrong juice."

She shook her head and walked away.

Whatever, I had bigger problems.  This kid was in major meltdown mode and I had a haircut appointment to get through.  I blamed myself, what an idiot I was to not bring in a drink option for him in case something went awry with the drink they have.  Lesson learned!

So, on to the haircut.  We use a lady who cuts hair in her home and she has been amazing.  Even when it doesn't go well (which is always) I do not have to worry about getting a bloody nose in front of a bunch of other people or dodging dirty looks and rude comments.  She has a play room that he can relax in while our oldest son gets his cut.  He hears the clippers and covers his ears, but does not react as badly as he does in a regular salon.

Once it's his turn I go in and sit on the chair and put him in my lap.  He screams and cries the whole time.  The vibration of the clippers, the sound of the clippers, the feeling of the hair falling on his face.  It's sensory overload at its worse and most children with autism absolutely despise haircuts.  He also despises hair washing and brushing.  So we go through a hell of a few minutes once a month to have an easier daily routine.  We have tried distractions, treats, everything.  Nothing works.  We cannot use scissors as he bucks the whole time.  It is so terrifying for him.  Our hairdresser gets it done in about 4 minutes and we just just buzz it off.  I put a hold on his entire upper body with one arm, I hold his forehead with my other hand and I lock his legs between my two legs.  I count and provide deep pressure and sing ABC's.  There is no explaining it will be done quickly as the here and now are all that matter.

After he was done the hair on him was really bothering him.  It usually does not bother him this much, but this day he was itching all over and sobbing on the floor.  Our hairdresser sprinted to her son's room and grabbed a shirt for him to wear.  I had one in the car, but we didn't want him to go outside without a top on and I couldn't leave him so upset, it would only intensify.  There was a raccoon on the shirt, so at first he wanted nothing to do with it.  We let him settle and she asked again if he wanted a fresh shirt.  He let her put it on him.  She knows how hard this experience is for him and goes above and beyond to make him comfortable.  He wore her son's shirt home and I was so grateful that instead of brushing it off as an overreaction she was incredibly eager to help.

We got home and needed a bath as he was still itching.  He did not want to take the raccoon shirt off now!  I think it was about thirty minutes of running around the house and screaming "No bath!", I am sure some things got broken, I don't really keep track anymore.  We put on some music and his mood improved.  We were able to get the bath done, although he was very upset by the bubbles (soap).

After bath I had a glass of wine and the boys had a dance party.  We played Her Diamonds over and over (how fitting, right?); that boy loves him some Rob Thomas.

This was around 3 and I will be honest the rest of the day I do not remember as vividly.  I am sure dinner was a bit of a battle.  He fell asleep rocking on the couch singing after taking his medicine (without sleep meds, he sleeps only two-three hours a night).  He slept until 12 and then was up for two hours (I do not remember this specifically, but it's pretty much a given every night) and then finally fell back asleep next to me on the couch.

This is long.  This is exhausting to read.  This is exhausting to live.  So what is the take away?  A couple things.  First, I go into excruciating detail because our lives right now are very carefully choreographed routines.  We tip toe, we plan, we sometimes feel like we walk on egg shells to keep our lives and his world running as smoothly as possible.  For families living with autism, Autism Awareness is not a buzz phrase.  We are not using it as an excuse for bad behavior or a ploy to get your pity.  We want you to know what it is like and we want you to feel how he feels.  I want you to know how bad it was and how much better it is getting with services, but how much further we have to go.  I want you to understand that my child is not just quirky or just a little different.  You are seeing years of progress with intervention and many hours of work and patience that our family and our son has endured.  When you see us on our good days, it is because these services are working and I am working endlessly to make everything go a certain way so that it will be a good day.  When you see us on our bad days, know that we are a work in progress and we are constantly adjusting our lives and tactics to address any new challenges autism presents.

The second take away is quite simple: people matter.  The people that surround us are our support system, our confidants and sometimes our hindrances.  Out of this entire day that I have laid out for you, there was only ONE person that didn't get it.  There was only ONE negative reaction that left me with a bad taste in my mouth.  And thank God for everyone else, because if we had to combat autism and negative people all the time it would be too much.  I am so grateful for all of the people, even strangers and acquaintances, that offer a helping hand or a kind word.  When everyday goes like this, we need understanding and we need people in our corner.  He needs teachers and therapists that care, because we are shaping him into a person that can conquer all of this.  I want the world to know how important that is and I want our leaders to do more to make those services and autism research a priority.

The challenges of autism offer all of us an opportunity to be our best selves.  It offers my husband and I  the chance to be the best parents we can be.  It offers our family a chance to be supportive and caring, even if they cannot be here to help with the daily struggles.  It offers our friends the chance to be a listening ear or a shoulder to cry on when we need that support system the most.  It offers his siblings a chance to be better people and to know that it is never okay to bully and it is always a must to take care of those that cannot take care of themselves.  It offers teachers and professionals in the field of special needs a chance to shape a little boy and give him tools he will use the rest of his life to function and succeed in this world.  It offers strangers a chance to lend a smile, or a helping hand that could make our day ten times easier and they may never know.  My hope is that after reading this you will always take those opportunities because you know the difference it can make in a family's day.

Tuesday, January 21, 2014

Unconditional Love and Never Never Land

Over the Christmas holiday we decided to enlist the help of one of our Christmas decorations to promote good behavior with our oldest son.  Very much an Elf on the Shelf tactic, but we didn't spring for one of those this year.  Instead, we have a rustic snow man that holds two little blocks to countdown to Christmas.  It started out simple enough.  Our oldest son was being a little crazy and not listening one day and I told him that he needed to behave or Santa would not bring him any presents.  When we were kids, it was enough for our parents to say, "Santa sees everything you do, so be good!" That was not enough for Brennan, though.  He asked inquisitively, "If I am here and Santa is at the North Pole, how will he know when I am being bad?"

Instead of taking the magical route, I went with the technological approach.  Our children, after all, are pretty up to speed on the latest technology these days.  So I informed him that there was a webcam in the snowman's head and it would Skype a live video feed back to Santa at the North Pole.  This answer was sufficient for him and for the most part we saw drastically improved behavior leading up to Christmas.

Our youngest son did not understand the concept of being good for an upcoming day.  As everything for him is happening right now and he can't even really grasp the idea of tomorrow, much less behaving well for a month in order to have a reward of presents.  Evan absolutely loved all of the Christmas decorations, but the concept was lost on him.  He most loved trying to take every single ornament off the tree and throwing the countdown snowman on the floor a hundred times a day.

This worried our oldest son...A LOT!  "Mom, Santa is not going to bring Evan any presents, he sees him throwing this snowman down over and over again.  He is going to be on the naughty list for sure!" I tried to explain to him that Evan doesn't quite understand consequences yet and really does not even know that throwing the snowman down is a bad thing, he is just very excited by all of the decorations and doesn't quite know how to handle it.  I assured him that Santa would probably understand.

So this had become the normal conversation every time the snowman was tossed to the floor.  Until one day our oldest instead said, "Oh, Evan, I know you don't know why you do that, but Santa knows you have autism, so I hope you get presents anyways."

Just in case Santa did not already know, he then took it upon himself to prop up the snowman and explain Evan's situation to Santa.  It was one of the sweetest big brother moments I have ever seen.  Almost like he was defending his little brother's case.  "Santa, Evan just has autism, he doesn't always know what he does and he does stuff before he thinks most the time."  For a just turned 4 year old I thought this was a rather accurate analysis.

He does not overcomplicate Evan's issues, but he frequently has to overcome boundaries that autism presents to our entire family.  He tries to play with Evan and wants to engage him, but Evan will misinterpret his signals and thinks he is trying to take the toys he is holding.  So Brennan's prompting for play is often met with him getting hit by a dinosaur.  It doesn't stop him from trying though and he rejoices in Evan's successes right along with my husband and myself.

The innocence behind his questions and comments about his brother's autism will melt your heart and for me, they have taught me more than I could ever read in any book.  The other day, Evan said a wonderful sentence and asked outright to watch a very specific movie, even naming the characters.  Brennan jumped up and down and exclaimed "Evan, you know their names, you know about the movie, you're starting to not have autism anymore!"

He sees his brother growing and overcoming challenges, and he hopes it will go away so that he can play with his brother and his brother will always respond when he talks to him.  It's his heart's biggest wish and it comes up very frequently.  He knows his brother is different and he is okay with that, but he wishes it was not so hard for him to understand and communicate.

He asked for power rangers for Christmas and made an extensive list of toys just like every other kid.  But a few days before Christmas he walked up to the snowman and said "All I really want for Christmas is for Santa to take my brother's autism to Never Never Land so he will never have to deal with it again."

All of these comments and with all of the attention we sometimes have to direct to Evan, I know he wishes it was different.  He asked if his sister will have autism when she is three or if she will be able to understand him and play with him.  It moves me that no matter how much he gets ignored or chased away, he will always ask Evan to play with him and there are moments where he breaks through, like only a sibling can.  That little boy lives for those moments.  He tolerates listening to screaming at night and usually just turns over and covers his head.  He tolerates having to give up a toy he had first if his brother desperately wants it and cannot be consoled.  He usually stays very calm when his brother destroys a city he's made out of blocks.  He may not completely understand, but he gets it and has matured a lot because of it.

His little baby sister will get it too.  For right now she loves to watch her brother run in circles or rock and sing.  Her face lights up when he talks to her.  They seem to have their own little special connection.  Evan does not really understand soft touch or that he is bigger than she is.  He is working on it, though.  More than once has he said very sweetly, "Sit on baby's lap," as he tries to sit on her while she is sitting in her bouncer chair.  We have obviously had to watch him very closely, more like you would handle a one year old with a new baby.  But he is learning and will try to kiss her and hold her hand.  He has even shared his beloved dinosaurs with her on a few occasions, but then of course quickly takes them back claiming they are too big for her.

I am so grateful that Evan has siblings that will always watch out for him.  And with all of our moves I know the boys will always have a builtin best friend.  I think his siblings probably understand him better than I ever will.  Even though they may have to grow up a little faster to cope with the challenges our family faces, I know it is building character and shaping them into individuals who will not only accept people's differences, but embrace them.

Thursday, January 9, 2014

Giving Up

Well, it's official, I have decided to give up.  What am I giving up?  Everything that seems to matter and everything that has the appearance of importance.  After battling with myself for many months, I have decided to take a break from working on my Master's.  It's a difficult decision when I am so close to the end, but after an incredibly difficult semester, during which I was only getting about 4 hours of sleep a night and constantly running during the day, I have decided to continue when I have a little more energy and time to commit to studying.

It hasn't just been the new baby or even having three kids under 5 that has made this a busy and trying time.  It has been autism and all of the lovely challenges that come with it.  Yes, my son is in preschool and Mom's Morning Out, so I should have time, right?  Maybe if getting him there wasn't such a battle.  On the days I can get him out the door and to go to school (when we have had a night of more than 3 hours of sleep) it still takes an hour of screaming to get him ready and convince him (kicking and screaming) to get dressed and get to the car.  It then takes his teacher carrying him kicking and screaming from our van into the school.  After enduring that every morning, it does not leave much energy for the two hours I get with just the baby and me.

So after many months of this routine and the days home being even worse and more exhausting, I decided to call it quits on school to take one manageable stress out of my life.  To me, this seemed like a wise and almost a simple decision.  You can imagine my shock when someone very familiar with our situation said to me,  "So, you're just giving up?  People who have full time jobs get their Master's all the time.  You don't even have a job.  Why is it so hard for you?"

So, yes, I am giving up.  I am giving up on school, just like I gave up my career and gave up my body for our family.  I've pretty much completely given up sleep and fashion and nearly given up hygiene as well.

Even though we have a different daily battle than some, I don't think my complaints are that much different than other stay at home moms.  Cleaning up the house multiple times a day, and it still looking like shit before we go to bed.  Using our Mom's Morning Out to do the grocery shopping or shower.  Cooking a dinner just for the kids to push around on their plate.  And for my fellow military mamas, not being able to hold down a meaningful job even if we wanted to because we move every two years.  Factor in a kid that completely loses it because there was a detour and you had to go to school a different way or whose entire day is thrown off because he woke up to the wrong sound or wrong lighting and you would probably want to throw your hands up in the air and be done with it all.

Of course there are some things I won't give up.  The less prestigious and the unseen things.  I will not give up fighting every day to make our lives as normal as possible, even if it means having a wonderful outing to the dinosaur museum knowing we will be listening to screaming and crying the rest of the day because we had to leave the museum.  I won't give up on fighting for my son's care and education, even if it means going round and round with Tricare, EFMP and the school district until I am blue in the face.  I won't give up quality time with my children or snuggle time with my baby girl even if it means the house isn't perfect or dinner wasn't made from scratch.  I won't give up my identity even if that identity is ever changing and growing and becoming something more.

I will willingly give up being a Pinterest mom, having a perfect body, having a perfect house, having the perfect look.  I begrudgingly give up completing school, having a career or getting a full night's sleep.  I will never give up on my family and working hard to make sure my three little blessings have everything they need to be taken care of and succeed in life.

I want to tell you a story...

I want to tell you all a story. It’s about a mom who had two babies 12 months apart. And the second baby was different. He was sad or mad...