Thursday, October 24, 2013

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.

Wednesday, October 2, 2013

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.

Wednesday, August 7, 2013

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!

Tuesday, April 2, 2013

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.

Tuesday, February 5, 2013

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!

Monday, January 28, 2013

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.

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...