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.

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.

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.

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.

My Ears Are Tired

So one thing I have learned about being a mother is how special a quiet moment is.  I think back to times when we were vacationing before kids and I could hear the ocean outside when we first woke up.  I then was able to go downstairs and have a quiet breakfast with a beautiful view at the resort restaurant.  I kind of want to get in a time machine and go back and tell my ignorant self to enjoy that moment to the fullest and take it all in.  I want to tell myself to accomplish everything you possibly can before you have kids, because the constant noise afterwards will turn your brain to mush!
Sometimes I think it's just me, but then talking to my sister the other day, I know I am not alone.  While she might not have to listen to a little boy screaming 30% of everyday, her daughter is going through a stage in which everything she says must be acknowledged verbally and acknowledged in the way she prefers, and she corrects my sister over and over again.
Lately the noises in our house have given me a new level of respect for the quiet.  And no it is not (or rarely is it) my sweet little newborn baby, she usually just cries when she is hungry.  I feel like our oldest is constantly talking and questioning, sometimes really wanting to know the answers and sometimes just talking to hear his own voice.   Today on the way home from MMO he asked "Why do the Mountain Heads (Mount Rushmore) not have arms or legs, why mom, why, why, did you hear me, why?"
Our other son who was recently diagnosed with autism just screams, whiney raspy screams, and I never know what will bring it on or what will make it stop.  The other day, our hairdresser was telling me about another child with autism who is much older than mine who is "still very naughty" and who tried to punch her the last time she cut his hair.  This comment struck a cord with me.  Our hairdresser is wonderfully understanding and does an absolutely fabulous job when our son is screaming and bucking while we try to cut his hair.  But her comment reiterated to me the misperceptions people have regarding kids on the spectrum.  It's the same misperception that causes my mom friends to ask me why I do not use time out or spankings to get through to my son that he can't chuck a toy across the room when it makes a sound he does not like.  Disciplining a child with autism is probably one of the biggest challenges we are facing and the world around us does not understand because they are not educated on how children with autism think.  Most children on the spectrum have very little impulse control and while they can be very bright they do not understand appropriate social behavior and seem to understand consequences even less.  They are generally not being "naughty" instead they are so overwhelmed by their senses that a haircut or even a trip to a store with bright lights is literally painful to them and they are simply reacting to that pain.  We have tried holding him in the corner for ten seconds when he is aggressive towards me or his siblings, but we can tell he does not make the connection and does not even understand he is being punished.  While he does understand the word "no" it throws him into a frenzy that you are challenging his world, it does not teach him the behavior he just did is wrong and wrong every other time too.  We have a small army of therapists and teachers trying to better equip us to help him make better decisions, but like every other challenge with him, getting through and being consistent is a long process.
Now this is not a "whoa is me, life is so hard" post.  But simply making you aware.  Until you have experienced a meltdown (much different than a tantrum, he is not doing it for my attention) you have no idea how scary they can be.  I fear for his safety and my own when trying to control a meltdown, but it's like he is short circuiting and anything I say or do just makes it worse.  He cannot hear me and process what I am saying in that moment, the noise I am making is just making him more upset.
He had a great first day of preschool yesterday, but melted down on the way home from overstimulation.  He asked me to take his coat off, then screamed when I took it off, and then cried when I tried to put it back on.  He kept asking for his shoes off, but then kept yelling he needed them back on.  I actually took audio (linked below) of a couple minutes of the way home to share with his behavior therapist and maybe to show my husband what I listen to all day long.  I have attached this audio simply to illustrate the desperation and frustration in his voice.  This was caused by me taking his coat and shoes off when he asked, which makes no sense to me as to why it triggered this two hour long screaming meltdown.  Once again, I do not want you to feel sorry for me, but I hope this will raise awareness as to what kids on the spectrum are facing.  I feel so bad that I can't always understand what it is he really wants because he is telling me the opposite or maybe doesn't even know what he wants.  It hurts my feelings that if people see him melting down at an event or in a public place that they think he is being a little brat and that I am a bad parent because I can't control him.
The noise kills me, but I know it's even harder for him and I know he does not want to be so upset by every little thing.  I know he wants to sleep through the night and I know he wants to be able to participate in outings without making a scene.  It hurts me that he can't always accomplish that.
With all of the noise this disorder has thrown into our lives, it is sometimes hard to think about or acknowledge some of our huge successes!  We went on a trip this weekend and had to be in the car for a long time and stay at a hotel.  Six months ago this would have been nearly impossible.  We had to go into three new buildings this week for appointments and his new school and although hesitant, walking through the door did not trigger a fight or flight response like it used to.  While sleep is still a battle and he is up every night, he is going back to sleep so much more quickly and that is a miracle.
Now that both boys are in school in the mornings I am getting to enjoy some quiet a little more and my hope is it will make me that much more patient during the noise.

The "A" Word

I sat here for awhile trying to find the words to say to begin this post.  Sometimes it's easier to stay quiet  and always wear a smile, but sometimes you have to share your struggles.  Why is it important to share our struggles?  I guess in some ways I feel like it could help somebody else know that they are not alone.  Some of my reasons for sharing are selfish, though.  If I don't share I might just explode.

Our son was recently diagnosed with Autism, and although in the back of my head I have known for years, I think the actual diagnosis has allowed for the emotional piece of our reality to catch up with me.    Up until this point, for me, it has all been very matter of fact.  There is a delay, there is a wiring issue, there is an age deficit and we have to do A, B, and C to make this right.

And we are still doing A, B, and C and probably D, E, etc, too.  With this diagnosis we will be doing even MORE interventions and therapies.  We have already seen such progress and I am amazed at what early intervention can do, but I see him struggle and I wish every little thing was not so hard or a such a huge event.  It hurts me, that taking my other son to preschool in the morning causes a panic and a screaming fit the whole way there, the whole way back and usually for about a half hour when we get home.  It hurts me that when other people are planning Halloween parties and trick or treating, I am assuming either of those will result in overload and send him into a tailspin.

These assumptions have me torn.  I so want him to experience new things, because when he likes something he REALLY likes something.  But then I am terrified it will result in a meltdown or a kicking and screaming match that I can hardly control, so I will many times avoid a new experience all together.  I am not sure if that is to his benefit or his detriment, but sometimes I don't feel like I even have a choice.

Today was the first day I cried just for him, with no event spurring it on.  I have cried before in the middle of the night when nothing is working to get him to sleep.  I cried when the fair terrified him and he found no joy in it at all.  I have cried out of frustration when for the life of me I cannot figure out what he wants.  But today, I heard this song about a girl with autism, and I cried for him and the challenges I know he has ahead of him.  He has the coolest personality and his excitement for life amazes me, and I would not want that to change.  It is a part of him and I am so in love with every single part of him.  It really is a beautiful blessing and a beautiful curse.

http://www.autismspeaks.org/news/news-item/kentucky-singer-releases-moving-song-about-her-sister-autism

Hygiene Confessions from a Mother of Littles

I have been thinking of this post for awhile now, but for the last few months could not remember the email I made up to access this blog...go figure.  It finally came back to me yesterday, perhaps that means my brain is growing back post pregnancy, or maybe just dumb luck.

Either way, I know I am not the only one who looks in the mirror and wonders how I went from woman to mom, with seemingly little trace of woman left.  I think we can all take comfort in knowing this stage does not last forever, and in the not too distant future we will once again be able to pee by ourselves!  In the meantime, laugh at this light hearted approach to our current state of being.

Nine Hygiene Confessions of a Mother of Littles

1) I have been working on the same can of shaving cream for nearly a year, and no, my husband hasn't even been deployed.

2) I used to spend $30 for salon shampoo and conditioner.  I do not have time for two steps, I now use a two in one made by Pantene.

3) About 80% of the time I leave the house without looking in the mirror and I put way more thought into what my kids are wearing than my own clothes.

4) In the midst of three to five appointments a week for everyone (including the dog) but me, a dental cleaning is somehow considered "me" time and thus has been put off for a year and a half.

5) I get more use out of my label maker than my blow dryer or straightener...seriously, I have blown dry my hair less than ten times in the last year.

6) I can only shower when hubby is home or I have a babysitter, so yeah about every third day.

7) If the children are screaming and pounding on my door when I turn off the shower, I turn it back on for five minutes to allow myself the illusion of peace and quiet.

8)  I use more concealer under my eyes than a drag queen and very rarely enjoy the luxury of foundation, blush, eyeshadow and don't even own mascara.

9)  While I love this stage of sippies, bottles, giggles, and discovery, part of me longs for the day when I will be able to take a bath and have a glass of wine without three baby monitors threatening interruption!

From Machiavelli to Macaroni: The Many Hats We Wear

While I should be using this time to work on my paper on The Prince, I have decided to use these few minutes of quiet to write a post instead.  Maybe it's the two hours of sleep I got last night or perhaps it's the many Facebook posts and media stories drawing attention to autism today, but whatever the cause, my emotions have been worn entirely too close to the surface lately.  I guess I could blame pregnancy for the tears, but sleep deprivation seems a more likely culprit.

In light of World Autism Awareness Day, I will make my small contribution to the public discourse regarding this challenging epidemic.  Our son has not been diagnosed with autism, but that may be because he is only two and we are waiting to have him evaluated.  He has been seen by a multidisciplinary team (a PT, OT, ST and special needs instructor) who concluded that while he showed some delays he was most likely not autistic.  We have discussed his repetitive and compulsive behaviors with his pediatrician who thinks he is just hard headed.  We are seeing an OT who thinks he exhibits many classic autistic behaviors, but has such good social and communication skills that she doubts he falls on the autism spectrum and she believes most of his issues are sensory based.  He sees a behavioral therapist who has performed two screens (both came back calling for further evaluation and put him on the autism spectrum with very high functioning) and thinks he exhibits autistic behaviors, but agrees that additional screenings after he turns three would be more beneficial than evaluation right now.  A lot of mixed messages that leave us scratching our heads and constantly wondering if we are doing the right thing by him.

All of the personal stories of autism posted today hit just a little too close to home.  The fear of public outing meltdowns resonates loudly and is the reason for a long time we made minimal attempts to shop or eat out with the boys.  There was a story on CNN today about a little girl with autism and her "broken cheeseburger" that made me cry and laugh.  Regardless of whether our son has autism, SPD, special needs, or is just wired differently, his bad days have really opened my eyes to the need for understanding when we see families out in public.  Whether it is throwing furniture because I left the room or bashing his head into the floor at school when another child is being scolded, most of his reactions to the world around him seem more like intense overreactions.

I feel like I spend more time researching his condition than I do on school work.  But the reward is so much better than a degree.  This weekend we went to Reptile Gardens and he followed directions so well.  We went out to eat at a sit down restaurant, sat in an area with few other people, and it was a peaceful meal (well as peaceful as it could be with two toddlers!).  I'll spend countless hours working toward using a new cup or teaching him to self-feed macaroni, but the payoff is amazing and I love it when he succeeds at something new.  It has been an adventure, living with a two year old that can recognize and name all of his letters, all of his numbers, all of his shapes, all of his colors, but who I am having to teach to play with and accept touching stuffed animals.

I guess the point of my post today is that all of us, as families and individuals, have more on our plate than meets the eye.  So if your instinct is to sneer at the parents of the child who pushes his food around his plate at the holiday dinner or to whisper to your spouse when you see a mother dragging her screaming two year old off the floor of the grocery store, stop and consider the possibility of circumstances beyond one's control.  I have heard of making up business cards that describe and explain your child's condition and keeping them on hand to give to rude people that cannot keep their comments to themselves.  I have had a couple situations recently that would warrant a business card blow such as this, but without me having a name or a diagnosis for what ails him, it makes it a little harder.  Instead, I will continue to brush off the negative looks and comments and remain very grateful for helpful strangers who offer a helping hand or words of understanding.

The Rock that Doesn't Stop

I have known a lot of little ones that never stop moving.  Both of our boys are very active and they never seem to run out of steam.  One of our babysitters once asked Brennan, "Where do you get all of your energy?"  He casually replied, "I think it comes from you."  She and I both agreed that his observation could not have been more accurate.  The wilder they are throughout the day the more likely I am to collapse before the news (which comes on quite early here in South Dakota, so it's pretty pathetic not to make it).

Evan's need for movement is even more demanding than Brennan's was at this age.  Even when sitting, he must be moving.  He rocks back and forth in his high chair, in his car seat, on the couch..anywhere and hard.  He slams his head back so hard we have questioned whether or not he may need a helmet.  Not only does he rock, but generally chants incessantly while he rocks.  We have tried wiggle seats, switching to a booster seat, everything, but the rocking doesn't stop.  The sound of the rocking gets to me so much that I took his booster away and tried to switch him to a small table and chair set.  Boy, was that a mistake!  When he realized his booster was gone he screamed and threw himself to the floor.  He then went over to Brennan's booster and pushed it across the kitchen so that it sat where his should have been.  To say the boy hates change would be a gross understatement.  Changing from peanut butter and jelly sandwiches to lunchmeat sandwiches resulted in a broken vase on my floor.  Transitions from indoors to outdoors or walking to being put in a cart or stroller have become such an issue that public outings are limited or not attempted at all and generally cut short by a terrible tantrum.

We are not sure whether the rocking is a way to satisfy his sensory deficits or if it is merely a phase.  The link below is a taste of what he does constantly.  The black paint on the wall is from his chair and the chips in the paint are from the wear of rocking his chair across the room into the wall.  We now have a piece of furniture in between him and the wall, but it doesn't stop him from nearly toppling forward or backward when he gets going hard.

So our house is always moving.  Even though I know it riles them up in the evenings, I do love listening to their happy squeals as they lap each other around the house.  On another positive note, both boys are starting gymnastics and Brennan is signed up for soccer.  The beginning of our journey into sports and other physical activities which I am sure will become a necessity in running out their energy before they run me ragged!

The First One

I created this blog about five months ago and I am just now getting to write my first post.  Needless to say, I may not keep up with this regularly.  It has become so commonplace to have a blog though, I feel I should at least attempt to keep one to chronicle the stories of our little family.

One may wonder about the name I have chosen for my blog.  Right now in the midst of both boys (two and three years old) having yet another stomach bug, the blog name seems even more appropriate.  While most mothers may fill their blogs with all of their proudest moments or hysterical anecdotes regarding their children's escapades, I generally will write a little bit more about the challenges of raising two crazy boys 12 months apart.  Sure, like every parent, I have those incredibly rewarding moments in which my heart is so full it feels it may burst.  However, those moments are interspersed amongst a multitude of more typical moments, the moments that have me asking myself, "WTF, is that chocolate or poop all over the wall?"

I do enjoy my children and love them with all my heart, but for me personally, the time away from my personal goals and my career are a big sacrifice that we are consciously making to have one parent home with the children during the years before school.  I am so far from the mother that feels that parenting is the most rewarding thing you can do, that when a stay at home mom claims nothing is better, it makes me think she is lying or demented.  Granted, I know some actually feel this way, I am just not that person.  I do know, though, that all of the time, effort and love you put into your children is more than worth it when they become their own responsible and caring people and have you to thank for it.  Still, doesn't make catching puke or changing diapers any more glamorous!

So why write a blog chock-full of stories about the unending (albeit sometimes comical and unbelievable) challenges of raising children?  I have a few reasons.  One, it will be nice to vent to something other than Facebook.  Two, so many of us mothers of young children may feel incapable, unprepared, or downright exhausted in the face of the task at hand.  It may be nice for others to read of my typical day and know they are not alone.  My third reason for writing is for those of you that have never faced the task of taking care of toddlers 24/7 or those of you that are so far removed from the days of caring for babies that you have forgotten about the constant tantrums, the sleepless nights, and the forfeiture of your entire self.  So maybe next time you will not be so quick to judge the mother who forgot to brush her son's hair before preschool or the parents of the kid whose socks don't match (or for that matter the adult whose socks don't match, as it has recently happened to me on more than one occasion).

My final reason for writing this blog is to share the challenges of raising a child with what has most recently been diagnosed as sensory processing disorder who is more stubborn and hardheaded than me and his daddy combined.  We are learning as we go and I look forward to sharing his story as he progresses through a variety of treatments.

That's all I have for now.  Hopefully, now that I have the first one done the rest will follow a little more easily.