It’s all he wants….

He doesn’t ask for much…. largely because he lacks the words to communicate his desires.  His frustrations spill into his days like tears dripping from dirty little cheeks and I wish I was always able to guess what it is he is searching for. My primal instinct, as a mother, is to meet the needs and wants of my children but sometimes Autism, and life, makes that task more difficult that I would have ever imagined.

When I can guess what he wants before his anger begins to boil over, it is a victory! It is a victory that I celebrate in my heart as if it were his first steps or his first smile. For just a moment we are one on this battle field and we share a little happy dance – sometimes quite literally – and we get to chalk one up to the good guys.  Other times I scramble through his picture cards, offering him options upon options, hoping that one of these little 2 by 2 scraps of paper would contain his hearts desires.  Still, there are times, when he screams and he cries and he throws things while I feel like joining him in his little fit because I have absolutely no idea what he wants or needs and he has no way to tell me.   Every day can’t be a victory.

That leads me to tonight. Tonight we had a victory! I put my sleepy little man in his bed and he screamed! He screamed like I was hurting him, like the bed had suddenly been changed to broken glass and he was frantically trying to escape the torture.  The scream turns into a loud “No!” and he begins to tear at the bed, throwing blankets, his Toy Story pillow and countless stuffed animals in a teary eyed frenzy.  I’m desperate to figure out what is wrong, but, I fail horribly.  Suddenly, he drops to his knees and begins to claw at the little Winnie the Pooh characters that are on his sheet then begins to pull the sheet with all of the strength he can muster. It dawns on me – I put a clean sheet on his bed!  He has soaked the bed this morning and I had thrown the Diego sheet in the wash and put a Pooh sheet on – no problem right? Wrong!  How was I to know that he was on the outs with Winnie and his friends? How was I to know that A.A. Milne’s playful forest friends were “So last Tuesday!”.

I grab another sheet from the drawer – this time Spongebob Squarepants (don’t judge! lol) and hold it directly in front of his eyes trying to get his attention.  It takes a full minute for him to calm down enough to hear me talking and acknowledge that I am holding another sheet.  He immediately calms down and starts to whip the tears from his cheeks with the backs of his tiny little hands.  He makes that sad little gasping sound that small children make when they have been crying so hard that they can’t even catch their breath.  I have tears welling up in my eyes – saddened by how upset he is, but, happy to have been able to figure out what it is that he was so upset about.

I scoop him up, pull the apparently offensive Pooh sheet off of the bed and throw it in an overly silly gesture towards the bedroom door …. and he smiles. I put the SpongeBob sheet on, gather the stuffed animals, blankets and pillow and tuck my littlest man into bed.  He is still making little short noises as he continues to struggle to breath calmly, but, he is smiling at me – his hero.  And I am smiling right back.

To an outsider, he may seem spoiled.  To an outsider, I may seem like a terrible mom for giving in to his fairly ridiculous demands.  To an outsider, we might seem like we are making a million mistakes – and maybe we are.  But, for tonight, my son is smiling and I was able to figure out what was making him so upset and remedy it for him.

That’s all I want, and, it’s all he wants too. A simple sheet is not too big a request for that little smile.

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There is no shame

He screams at the top of his surprisingly large lungs and swings with fists that land with all the strength of a child twice his age.  I run to stop the assault on his older brothers and he takes off into the kitchen as if he already has thought out what he is going to do next.  I, still comforting his brother, now chase after him into the kitchen and, although I am only 2 or 3 feet behind him, I can only yell “No!” as I see him reach for the little glass bowls I have sitting on the counter.  Before my hand can reach his he has already turned and launched the bowls, each nestled into the other, in my direction.  I finish the end of my very stern “No!” as clear glass shatters around my feet, which true to form, are bare.  The “No!” is then followed by a loud calling out for God’s eternal damnation – a moment I am not proud of, but, have found myself utter more often than I would like to admit.  He stands there, tears running down his face looking at me as if he has no idea who I am. By now his father has arrived on the seen and takes him into the other room while I clean up the glass.

So I sweep, and, I think. On days like this I’m not ashamed to admit that there is a poisonous thought that seeps into my mind…. this isn’t what I wanted.  When I was a little girl, I imagined my happy house with 1 girl and 2 boys and Sunday dinner around the table.  I imagined children laughing, long walks with my husband while the kids ran ahead of us and curling up on the couch with my love after our little ones have been tucked safely in bed.  That is what I imagined, but, it’s not what God had planned for me.  It’s what I wanted, but, it’s not what I needed.

Sometimes you are allowed to look around you and think “This isn’t what I signed up for!”  You are allowed to grieve the loss of the life that you thought would be your future and the future of your children. You are allowed to feel whatever emotions you are feeling.  At some point, between Speech Therapy, Occupational Therapy, Psychiatrists, Specialists, Support Groups and trips to the Pediatrician you are allowed to have a moment where you just feel overwhelmed by the world around you… overwhelmed, alone and maybe a little bit cheated.

There is no shame here. There is no guilt. There is only an openness to allowing yourself to feel what ever emotions life has to throw at you, processing them and moving on.  Society would never begrudge a parent of a child, who has an obvious physical condition, the right to grieve and feel cheated, yet, that same society doesn’t seem to have much sympathy for those of us who struggle with, so called, “invisible” special needs.

You are allowed to have days where your heart is broken.  You are allowed to have days where you fear for the future – not only your child’s but also your own.  You are allowed to be a human being who also happens to be the parent of a child with special needs.

So, I finished sweeping up the glass and I put away the broom and the dustpan and I looked out into the living room at that little boy and his big brown eyes… and the moment was over.  I scooped him up, kissed away his tears and thanked God for the blessings he has given me….including the ability to feel this host of emotions that make up my life.  There is no shame.

 

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Life changes and, therefore, blogs change too….

I started this as a light-hearted blog about my family’s journey through homeschooling and raising our 5 sons.  Since then life has changed and, therefore, my blog must change too.

We still have 5 sons, that will never change, but we are not longer homeschooling.  The decision to enroll the kids in traditional public schools was a difficult choice that I labored over for nearly a year.  I felt like I wasn’t able to meet the needs of Joshua, who already had special needs, as well as give everyone else the time and energy that was needed to maintain our schooling.  Zachary had started to show some signs that he wasn’t processing sensory input properly and was having a lot of upsetting behaviors as well. Joshua and Zachary started seeing professionals to deal with their rage and anger as well as the psychotic episodes both had experienced. Kyle’s anxiety and other personal issues were getting out of hand and he was upset and overwhelmed often. Our family felt like it was coming apart at the seems and I was at a loss for what to do to stop it.

Joshua and Zachary were sent to have Psychological exams done and the results were in… Joshua and Zachary were both diagnosed as having high functioning Autism and psychosis. Although I wasn’t necessarily shocked by the diagnosis, it was still a little hard to take in.  Meds were continued for Joshua and started for Zachary and the improvements have been nothing short of amazing.

Then, slowly, Joey stopped talking. How I didn’t notice it, I don’t know.  He just slowly receded back into his own little world…. a world that we were no longer a part of.  There were no more words, there were no more hugs. Sleep was more fleeting and Joey became fixated with lining up toys and pouring things from one cup to another.  There were moments where he would resurface into “our” world and when he did he was angry and aggressive – hitting and punching with no regard for the other person being hurt.  He either sat in a coma like state or he jumped off of things, climbed counters, couches, chairs, gates, tables…. he had no regard for his own safety nor did he seem to have any sense of fear or danger.  Joey has Autism.

Those words still sound so strange to me, so foreign and yet so obviously accurate. There was no disputing what was going on with out littlest man and the reality of it all quickly set in.  We now had 3 children who were diagnosed with Autism.  Joshua and Zachary were high functioning and I felt like I was beginning to get a handle on their issues.  I felt like I was “doing it” I was raising these 2 Autistic boys and the seems of our lives were started to come back together again.  Joey felt like a sucker punch to the gut, so little and so loving and gone so quickly.  This was the “Autism” I had always heard of.  This was the “Autism” I had been worried about with Zachary and Joshua and had never had to face.  This time, Autism had snuck in and robbed us in the middle of the night while it’s high functioning cousin was distracting us with our other kids.  I felt like I had reacted and taken action when Joshua and Zachary were diagnosed and went into momma bear mode, protecting my cubs and securing their well being while all the while it was kidnapping my baby and I didn’t even see it.  I had won a battle, but,had lost the war….

It seems almost anti climactic to now tell you that we took Kyle, our oldest, in to see a psychiatrist to get help with his anxiety and his other issues as well as to address the toe walking that had plagued him his entire life and came away being to told that he has Aspergers Syndrome – an Autism Spectrum disorder.

Autism is our marathon. We have 5 sons and 4 of them are on the Autism Spectrum. Our days consist of Occupational Therapy visits, home based therapy, my respite worker who is my once a week life line, psychiatrists, blood draws, Play-projects, support groups and a lot of emotions.  Our days also consist of all of the other things that are included with raising 5 boys – bike rides, beaches, running, video games, board games, books, the trampoline and fun!

So, this is the direction that our lives have gone in and, therefore, the direction my blog has gone as well.  Like I said, Autism is our marathon and everyday I have no choice but to run….   I hope you enjoy reading about our journey.

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The smell of love…..

I am the kind of person who loves to smell things.  I’m the girl who picks up books at the thrift store and holds them to her nose to breath in the scent that years of life have given to the pages. I’m the one who savors the hint of lilac in the air when I drive with my windows open in the spring. I could spend time just sitting in a shoe store soaking up the smell of that fresh leather, completely unaware of the shoes around me as I have no sense when it comes to footwear….. but that’s another blog entry! Fresh cut grass will always remind me of those last spring days of school when your mind had left for summer vacation long before your body was permitted to.  Mixes of roses and carnations and various other flowers will always smell like funerals to me, and therefore, will always make me smile by their mere beauty and break my heart, just a little, by the memories those smells hold.  In the same way, warm pine needles and fresh clean water will always remind me of Alpena and make me smile despite myself.

There is one smell that will always hold a special place for me and that is the smell of “love.” To me, love smells like grease and diesel fuel. Love smells like sweat and dirt and oil.  It smells like a hot garage in the middle of summer when the smell of rubber and fuel hang in the air just waiting to make my soul smile.   It’s transmission fluid and coolant with the lingering smell of old cigarettes.  That’s love.  It is the smell of hard work, determination, exhaustion, safety …. fun. I could stand there and breath that scent in all day long ……..

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My teenaged boy….

13 yrs old….how did that happen?  How could that beautiful little man, my smallest baby at birth, now be this tall young man I see before me? Only inches from surpassing my height he looks more like a man every day.  My little baby growing up to be the young man I always hoped and dreaded that he would be.

I am blessed to have been able to homeschool him for his entire educational career, making it possible for me to be present at all of the big moments in his life to date.  In that regard, it seems like a million years ago that we started this venture and an equally long length of time since I delivered this child on  Groundhog’s Day.  Months of bed rest had paid off and we both made it through labor and delivery in great shape and he was able to hold off his arrival until 37 wks.

Now I watch this child walk up to the door at his new school – confident and head strong.  He has never been the child that jumped feet first into things… from birth he has been a water tester.  I imagine his brothers running up to something and just jumping in without a thought and there is my Kyle still weighing the pro’s and con’s, considering the outcome of his choices and then feeling the water with his big toe to see if it is worth it.   I pray that he continues to strike a balance between fun and safety!

Happy Birthday my sweet kiddo.  I am proud of the child that you are, the man that you are becoming and the thoughtful son you have always been.  Thank you for the journey!

Love,

Mom

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My Gaudy Christmas

Last Christmas, I was sad.  I was heartbroken.  Although we still had decorations up, the trees twinkling and sparkling on November 1st, artificial snow on the windows, Santa and his reindeer out in the yard and lights flashing in various rooms – it was still a halfhearted attempt at celebrating Christmas  – especially our first Christmas in our new house.  This year – I am determined to make a change!

My house looks like it was attacked by a wild tribe of elves hopped up on eggnog.  There’s tinsel garland… everywhere.  Everywhere. I have Christmas lights running across the ceiling of my living room across the walls and around my windows.  There are stockings, red bows, nutcrackers, a leg lamp, a Charlie Brown Christmas tree, two Advent calendars and of course… the most gorgeous nativity I have ever seen.  I have officially lost count of how many Christmas trees we have up – each of varying size, shape and location.  I made a wreath for the wall near our stairs – it’s 40 inches wide….. who does that? Apparently I do :)  The Elf on the Shelf sits patiently waiting for December 1st to roll around and his job to kick into action! I would be lying if I said that that was all of our decorations – that’s pretty much just what I can see from where I sit on the couch typing this!  We haven’t even touched on the outside of the house with the big inflatable snowman, the even bigger inflatable Santa, the reindeer and sleigh with another Santa, more snowmen, a few extra reindeer, bulbs and lights in the trees and icicle lights from the gutters.

Decorating for Christmas makes me happy.  I love the smile on my kids faces when we light up the Christmas tree for the first time each year.  I adore the smile I see everyday after that when they turn the lights on and the house begins to glow.  I love that I am in no hurry for my kids to grow up and lose that innocence that makes Christmas such a magical time of year.  I love being able to see Christmas through the eyes of my children.

So, this year I am not sad anymore.  I am no longer heartbroken.  I have accepted that life has continued to move forward and I have moved forward as well.  I have once again embraced the twisted little elf that lives in the back of my mind who tells me that staple gunning tinsel to my walls is a normal thing! My house is decorated in such a ridiculous manner that gaudy is the only word that comes to mind…. and I wouldn’t have it any other way!

 

Merry Christmas from our gaudy house to yours!!

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Falling in love with fall

The air is crisp and the darkness is starting to creep in earlier and earlier each night.  Jackets are being pulled from storage as are cozy pajamas and fleece blankets.  Pumpkins are being carved and seeds slowly roasted in the oven.  The trees are bare now and the ground is covered in the kind of beauty that can only been found in freshly fallen leaves.

Leaves…. is there anything more magical?  Okay – snow if fabulous too, but, this is Michigan and I could have anywhere from 24 hrs to 2 months before I see my first snow of the season so lets just cherish the leaves for now!  Children need nothing more than a pile of leaves to remind them how to be kids again.  Do you have a sulky or moody pre-teen?  Those hormones are no match for a pile of leaves!  Little feet race across the yard and leap into the sea of colors sending leaves in every direction and giggles fill the air as the next set of little feet begin their journey across the yard.  Nothing beats hearing my 4 year old yell “Canon Ball!”  as he tucks his legs in tightly to his chest and disappears into the leaves only to come back up moments later, laughing, and usually spitting out little bits of leaf that snuck into his mouth as the smile that he was unable to contain became a full on belly laugh.   We make leaf angels too … much like snow angels but much more forgiving and you don’t wind up with a wet or cold backside, well, at least most of the time!

I snap picture after picture as quickly as I can, hoping beyond hope that I can somehow save this moment…. somehow keep them from getting older and no longer wanting to jump into the leaves with reckless abandon.  Before I can stop myself the camera is tossed to the wayside and I am in the leaves as well.  There are leaves being thrown at each other, leaves raining down as they are tossed in the sky and leaves being pushed down each others shirts…. and their is laughter.  The crackle of the leaves in drowned out only by the pure joy that I hear pouring from my brood of men.  I am laughing too.

I can only hope that they remember me being in the leaves with them.   I want to be the kind of mom that wades out into the lake in the middle of September just because I can’t resist the waves! I want to be the kind of mom that jumps into the pile of leaves or snow just because of the joy that it brings me!  I want to be the kind of mom that dances in the rain just because I love the feel of the grass and the mud between my toes.  I hope that my kids grow up to never lose sight of the little things.  I hope they grow up and continue to cherish that part of them that does those things too!  Maybe, just maybe, if they grow up watching their mom still act like a child sometimes then they too will grow up to act like a child sometimes as well!

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