The Sissy Test

When my sister and I were back in elementary school, we played this game where you scratch your hand over and over and over again, to see who can keep at it the longest and not give in like a sissy!  I was horrible at the game.  With the least amount of pain, I caved and gave up.  My sister was much better! I remember she had quite the scar from the silly game!

I was reminded of that game recently with Sam's favorite past time at home.  He is very subtle, but it is consistent.  He loves, no seriously it must be a passion of his, to just sit and irritate his little brother over and over again.  If we are in the car, he moves his foot to Noah's leg and just taps.  He does it over and over and over again.  Of course, this drives Noah crazy and he gives out a blood curdling scream with every tap.

If the kids are watching a cartoon, Sam will sneak up behind Noah and just tap his head over and over again-causing the same screaming reaction from Noah.  If we are eating dinner, he will try to steal his food or hit him or sometimes just give him a mean look, but all result in screaming from Noah.

The affect of this, on my nerves, is exactly what I used to feel when I would try to play that dumb sissy game.  It's the repetition of discomfort that almost creates a feeling of craziness.  Yep, this is currently my life, the entire time that Sam is awake or not at school.  It's no wonder that most days I drop him off in a daze, just longing for quiet or why I can do no more than stare at the wall in blankness, once they have all collapsed in bed for the night.

This much I know, raising a child with special needs is not for sissies!  If this is my test, each and every day, the fact that I haven't been committed yet, is a good gauge for how my pain tolerance has grown!  I still may not be able to scratch a hole into my hand to prove my inner strength, but the fact I'm still here, says enough.

Snuggle Time

Every night when I put Sam to bed, we like to snuggle for a few minutes.  We have our little routine and then he is very good to fall asleep.  Tonight was kind of a busy evening and I didn't really have time to snuggle.  I didn't tell him that or anything, I just didn't go in and chat.  I was busy doing other things.  I walked past his room and noticed that he had gotten out of bed.

In my exasperated voice, I said, "Sam, please go to bed."

In the cutest voice ever, he says, "Mommy no like me."  And started to cry.

Of course it pulled at my heart strings, but it also made me happy because he expressed his emotions so well.  I already know that he is hypersensitive to me ever getting impatient (which continues to happen probably more than it should), but seeing him with his hurt feelings felt so normal.

I instantly snuggled up with him in his bed and reassured him that I loved him so much, more than he could ever know.  And then, as he does every night, he asked me "what we going to do tomorrow."  I gave him the run down-step by step of the plans for the next day and he was happy again.  And just before I got ready to leave, he said, "I love you."

I sure love snuggle time.

I'm the mom...I'm in control

There once was a time when I truly believed that all control lay within my grasp!  It's so wonderful, isn't it?  You bring that first baby home and although you are scared, you have spent nine months reading all the books you can find.  You have it all planned out!  You are going to do it different than your mom did, you're going to do it different than your mother-in-law, you're even going to do it different than the mom down the street because this is your baby!  It's a marvelous feeling as you decide when bedtime is and what the daily schedule will be.  Of course, the baby does throw a few snags into your perfect plans because he or she needs to eat 30 minutes before you planned, but even that goes with "your" way.  If you choose to feed on demand or if you let him or her cry it out until the clock says its okay-either way-you are in control!  You are in the driver's seat and it's an absolute feeling of power and control!  Heaven forbid the well-meaning friend or family member who tries to tell  you a different way. And whether you want to admit it or not, you do have a few smug moments when you are out in public and your child is doing everything right and someone else's child is having a fit.  Let's face it, your child "must" be behaving so well because you fed him at the right time or made a sacrifice to get that nap in.

Maybe not everyone is as psychotic as I was when I first became a mom, but I truly thought I had it all figured out and I was going to do it perfectly!  I was even lucky enough to get a really easy first baby who rarely cried, did everything early, was at the top of the charts and never got sick! This only added to my delusion that I knew what I was doing!

I'm not sure when that perception was shattered, maybe because it was a gradual process and no one likes to document the moment they have to eat humble pie.  I just know that with each child and every year of parenting, I realized I knew less and less.  Even through that, I still clung to my control!  If I could control what they watched on t.v. and what friends they played with and what chores they did and when they went to bed and what they ate for dinner, then I still felt like I was doing my job!  And if I could bribe them or threaten them to be really good in public, then maybe I could cling to some inkling of perfect parenting.

Fortunately for me, Sam has taught me a new way to parent and it's about letting go of that all important control.  Can you imagine?  Can you fathom what it feels like to let go?  Well, I still cling to what I can, because I'm imperfect and it's a step by step process.  But, when I do let go, when I let the moments be what they are and just follow my children's lead, magic happens!  It is the best feeling!  And sometimes letting go of that control can be terrifying, but it builds strength too.

One of Sam's favorite things to do is explore the world!  He loves to walk and walk and walk.  Recently, we have learned to reign it in a bit by having him tell us he is ready to walk and we go with him.  But it wasn't too long ago when those walks came in the form of him disappearing.  The last major time it happened was in August and he was gone for 2 hours.  We had to call the police (not a first time experience) and we had detectives here and everyone out looking for him.  I was panicked. I was scared and emotional.  I felt overcome by fear and the possibilities of what could have happened.  During that time, I came to the realization that I truly have no control.  The control I cling to is a false sense of security because only God knows what is really happening.  In those moments, I knew that I had no idea where my Sam was, but God knew.  And then I turned it over to Him.  I stopped worrying and feeling so scared and just prayed that His will would be done and that no matter what, I would have the strength to handle it.  Believe it or not, that was the most liberating feeling I have ever had.  I didn't have to cling to my control anymore.  I could let go and let  God show me what His will was.  We found  Sam, barefoot and playing with some boys in a cul-de-sac about 5 minutes from our house.  He was perfectly safe the whole time.  But what if it had been different?  What if he had drowned, been kidnapped, been hit by a car...  Would my control have changed it?

This is an extreme example of control or lack thereof, but I think it shows the point of why it's important to just let go sometimes and let them take the lead.  It's okay to follow them and let them decide what they are going to do for the day.  Now, Sam and I walk every day, sometimes more than once.  When he says, "walk mama", we walk because I don't want him to go to great lengths to escape and walk on his own.  He has learned to trust me that I will not only let him walk when he wants to, but that I will let him lead the way.  Most of the time, our walks look a lot the same. He has a pattern that he likes to follow of things he wants to see in the same order, every day.  But sometimes, part way through, he will get an idea and off we go on a completely different path.  I just follow.  And I love the world he shows me.

Interestingly enough, although I have learned to let Sam take the lead on many things in our lives, I am not as good about that with my other kids.  I still hold them to strict standards sometimes and exercise too much control.  I know that children need boundaries and limits, I'm not talking about letting them do what they want all the time, but it's finding the balance.  It's learning to let go when they are 13 and want to spend time with friends or have discovered girls.  It's letting my 9 year old have a messy room sometimes because she would rather be reading a new book.  It's about letting my 4 year old make a huge mess in the entry way with her dolls as she pretends and pretends.   I think Sam was sent to me to teach me how to just let go more and enjoy life and the individual personalities of each of my children.  They don't need to meet my every expectation to be loved, but sometimes I worry my control issues make them feel that way.  And so I keep trying, letting them take the lead sometimes and watching where it will take us.  Life is truly the greatest adventure and for me, my children and my husband are what make it worth every minute!

My Trip to the Beach

Around the time that we learned that there were some pretty significant things wrong with Sam, I found a link on a friends blog to an amazing little story about a trip to Holland.  It talks about what it is like to raise a child with a disability.  I think of this little story often, but lately, I've kind of created my own version.  So, in order to give proper credit and let people know that what I am writing is not my own original thought, you can read the Holland version HERE.  However, I feel the need to write my own version, with a few modifications below!

I have always wanted to be a mom.  I was the oldest of five children and my whole life, all I wanted was to have a gaggle of children of my very own!  In highschool, I told everyone I was going to have 10 kids.  When most kids my age were dreaming up amazing careers, I only thought about being a mom!  When I met my wonderful husband, he talked me down to 5, or at least to take it one child at a time!

My first three children pretty much came without incident.  They were healthy and happy and hit all the milestones on time or ahead.  I thought I was becoming a pro! I used to joke that my first 3 kids were my first batch of cookies and they were my practice ones so that the next batch would be perfect! I mean, think about all you learn in parenting 3 kids-I was an expert!!

And then I became pregnant with my 4th baby.  I was so prepared. John was just graduating from law school, he had a great job lined up, we had just bought a home in the same small town I grew up in.  Life was going to be so smooth from then on.  Nothing could have been further from the truth. And although life has not been easy, by any stretch of the imagination, I am thankful for all of it.

Imagine that you were planning a beautiful, exotic trip to a white sand beach in Mexico.  You've been before, several times, in fact, so you know what to expect!  You are excited to lounge on the beach in the warm sun and feel the sand between your toes.  You pack several swim suits, a few pull over sun dresses and your favorite flip flops.  You are ready to enjoy every minute of this blessed vacation, because you know from past experience that the minutes will tick away all too fast and your vacation will be over all too soon!  This time you are prepared.  You know the places you will eat at again, which beaches you want to watch the sunset from and you can hardly wait for the day to arrive.

With bags packed and wearing your favorite summer outfit, you board the plane that will take you to Puerto Vallarta.  Nothing can quite prepare you for stepping off the plane, in mid December in Switzerland.  It's cold and snowing and the wind rips right through the thin capri's you are wearing.  You look around, waiting for someone to tell you there has been a mistake and they will fix it right away.  You check everything, trying to understand how this is happening, but hoping that it really isn't. You are not prepared for this.

Soon, you realize that this vacation will be different than what you planned.  Rather than relaxing on a hot beach, you will be hiking the Matterhorn and you've never hiked a day in your life.  You know nothing about thick wool boots with spikes on them or the ropes and pulleys you'll need to climb many rocky summits.  You have never dealt with the cold and the elements in this way and you feel nothing but fear and trepidation.  What if you can't handle it?  What if you fail?  What if it gets the better of you?  Those doubts and those fears can be a very deep dark hole that you wonder if you'll ever climb out of again.

So, you do what you can.  You find the right equipment and you very clumsily learn to use it.  You buy the right clothes and find others who have learned to hike this same terrain.  They are a Godsend to you, not only because they can do it, but because you actually see joy in their eyes and that gives you hope.  Maybe, just  maybe, someday you will learn to love this new adventure as well.  During quiet moments, perhaps at night when you have put your hiking tools away, you let your mind wander back to life before you arrived in Switzerland.  You were able to do so many other things and now you feel consumed by snow and ice and cold.  You think about that trip to Mexico that you didn't get to take and you feel a deep sense of loss.  In fact, it takes a very long time before that sense of loss doesn't make you sick to your stomach.

But those self-indulging moments are few and then you stick out your chin and get back to work.  You feel determined to learn all you can about hiking and surviving the cold!  You feel a sense of passion at not only wanting to survive, but to someday find great joy in what you are doing.  You work and you work and you fall more than you actually climb, but eventually, you discover a strength inside that you never knew you had.  You realize that you are learning to climb and now you don't fall near as much.  And there are even brief moments, when the sun sets just right and you've conquered a particularly hard cliff that you look out and see an amazing world around you.  You see a landscape that you would have never seen in Mexico.  You see a world that many never get the chance to see and words are lost as you stand and take it all in.  Your joy is complete in those moments and then, you get back to work.

And eventually, even if it takes years, your old life and your dream vacation and this new reality all merge together into a comfortable place.  It becomes home and you find peace with what you now have.  You learn to thank God for the littlest of things and you notice others in a way that you never knew how to look at them before.  And as those heights teach you to climb and climb and climb, you realize that you have been given the power and the gift, to touch heaven, just a little each and every day.

Pumpkin Patches

I will update the post later with pictures, but this is the week for pumpkin patches! On monday, we went, as a family to Hee Haw Farms.  We got in for free because of an event that was sponsored by the Angel Network for families of special needs children.  What a blessing people like this are!  They truly are angels.  It is nice to do something that would normally cost our family about $60 so we don't do it because we never know if 10 minutes into Sam will have a complete meltdown and we'll have to leave.  When things like this are free, it makes it more possible.  Plus, it's nice to be in a place where everyone else is dealing with the same issue!  There were so many beautiful children there with downs syndrome, autism and a whole array of other challenges.  These children are so special and bring such an amazing spirit with them that the whole evening was just awesome!

And yesterday (Tuesday) was Olivia's preschool trip to pumpkinland!  We had a blast!  She was so excited and loved every minute of it.  I think her favorite thing there were all the picture boards that she could put her face in and have me take a picture!  She had to do every one of them!

Tomorrow starts Fall Break and I'm so excited!  There are many things I want to do and hope that we have time for it all!

Last night, after dinner, Sam wanted to go for a walk.  He, Olivia and I walked around the neighborhood looking at all the Fall decorations.  It was so fun! He is obsessed with spiders and wants to be one for Halloween!  It was just cute to see their excitement over the decorations and their faked fear! LOL!  I just love this time of year!

Still Here

I didn't realize how much I would like this blog until six months or so went by without me writing anything and then I came back to read some of the posts.  It's amazing how many little details of a day can be so easily forgotten, if they are not recorded.   So, I'm going to try to get back to writing every day again, even if a chunk of 2010 is missing.

I spoke, in one of my last posts, about Sam going to the super awesome private school, but that it would be expensive and hard to get into.  Well, he did get in and started this Fall.  It has been an amazing experience and the changes that we are seeing give us so much hope!  He isn't perfect there, which is actually reassuring!  And it is nice to work with teachers who are open and honest about his progress.  There are no hidden agenda's, there is no double talk, it is simply a program who wants the best for  Sam-just like me.  We work together, have rewards set up at home and at school and it is working! He loves getting his "Wow" tickets, both at home and school!

Today is a Sunday and it was a crazy morning trying to get to church on time.  You would think that I would learn that life runs at a different pace with Sam!  But I often need reminders.  So, as I hurried through our schedule of getting kids bathed, dinner in the crockpot, snacks and activities packed, clothes found, last minute items tossed in the dryer and enough shoes for everyone's feet scrounged up, I felt like I was pulling teeth in trying to get Sam to listen.  Everything became a meltdown, and in looking back, I think most of it was the way I was talking to him.  I was hurried and rushed and exasperated and those emotions don't do well for him!

Finally, as it was time to walk out the door, he was in a heap on the floor in tears.  He had pants on (backwards) and nothing else.  I sent John to church with everyone else and I sat down to take a deep breath.  I waited for him to calm down and then told him we could walk to church when he was ready.  Well, Sam is a boy who loves walks! He lives for walks!  So, as I waited patiently, he got ready and we headed out.  I knew I was already late and part of me wanted to hurry him along, but I knew better.  So, we took our time, we walked slowly-taking everything in.  He had to stop and look at every roly poly and walk on the rocks in different yards we passed.  My frustration was gone, and I let myself just enjoy our time together.  We were halfway there, when he decided to veer off the path, towards the canal that runs through our neighborhood.  I called to him, but then followed.  He had been drawn to a yellow sunflower that he picked and handed to me.  It was so sweet and such a reminder to me how beautiful life with him is.  His pace is different than most and he sees things in a completely different way, and I love it!  I love what he teaches me each day!

We did eventually make it to church about 25 minutes late, but he was calm and happy when we got there.  It was such a stark contrast to a Sunday, several months ago when I forced my schedule on him. We ended up in the foyer, in the middle of a HUGE meltdown, when he decided to pee on me.  Little by little, I am learning to not push, to not pull, but to just follow along!

Funny Moments

Lately I have been spending a lot more time with Sam, just trying to let him be him and seeing the world from his view.  I've decided that he doesn't need to do thing my way to be normal, I just need to understand things the way he does.  This has been an amazing gift and given me so much insight into my darling little man!  Getting his ideas out can sometimes entail a lot of charades, but it can be fun!  I thought I would share a few things tonight.

Olivia talks daily about getting a puppy.  She is obsessed and is planning and planning for this new addition, even though we have told her it will be at least a year before mom is ready for another "baby".  At first, Sam would always say "no (insert panting dog sound), horse"  Yes, he believed we should get a horse instead of a dog.  Well, yesterday as we were walking, he said, "mammy, no (insert panting dog sound), ooh ooh, ah, ah"  I said, "you want a monkey?"  He nodded, with much excitement and said it again.  I found it so cute that he had really thought it out!  Of course, Olivia was quick to put things in perspective, as she said we don't have a tree for a monkey.

The other cute thing, took a bit more work to get out of him, so I'll save the actual dialogue.  We were discussing hair cuts, and he kept pointing to his chin and jaw line.  Finally, we figured out and he confirmed that he wanted a hair cut and a beard-at the same time!  He was convinced that I could just use the cut hair to make the beard.

He is a delight and I find myself enjoying him so much more than I ever thought possible.  Don't get me wrong, I've always held a special place for him in my heart.  As a baby, he was in and out of the hospital on a regular basis.  I was with him during most of those times and we had quite the bond.  Many times, when he is upset or scared, I am the only one he wants.  This can be draining and rewarding all at once.  But, I will admit, the past few years have been hard.  As he would make mess after mess and give me countless scares, I just felt worn out all the time.  I truly felt like he did those things, just to punish me, and sometimes he truly did.  If I didn't give him what he wanted, he would storm upstairs (to his room-or so I thought) only to find that he had locked himself in my room and ruined all of my makeup or flooded the bathroom while throwing in my blow dryer and curling iron with all the water. 

But he has taught me that those things don't really matter-they are just things.  And as I strive to understand his frustration, I feel great compassion for him.  I feel bad for the times I get upset and rush to judgment.  Someday, I hope to have true charity-unconditional love that overwhelms every other emotion.  I know if I have any chance of having that, it will come from these precious moments with Sam.  What a blessing he is in my life!

And because I do have 5 other children that I absolutely adore, I don't want to make it sound like Sam is my only focus!  I adore them all, and I'm so grateful for this role of motherhood!  I'm so imperfect and some days feel that they deserve so much more, but my love and admiration for each of them grows more each day!