What are you looking at?

I could feel the eyes upon us.  The curious stares.  The, what the heck is wrong with that kid, looks in people's eyes.    I was at the grocery store with my oldest.   Normally during the day when my children are with me in the store I am used to a few looks.  Mainly non judgmental but curious looks about why isn't that child in school.  We had just finished up at the dentist.

My son is a very sensory sensitive child.  He gets overloaded easily with stimuli.  Any change in his routine makes it difficult for him to calm down.  Not only was he out of school before lunch but he had just had nitrous gas at the dentist.  He was overly concerned with the fact that he couldn't feel half of his mouth.  Most children that have the famous laughing gas at the dentist are a bit loopy.  Sometimes for my son it makes it overly edgy.

On a good day my son flaps his hands, and hums to himself off and on all day.  The more stimulated he is the more the will stim.  Some days if he is under stimulated he will stim.  My son is a stimmer to say the least.  He has set patterns of hand movements he does.  They vary in intensity   Sometimes they are small movements sometimes he stims so hard you can hear him across the room.

Aisle after aisle in the grocery store my son bounced along.  Moving his hands to a rhythm that only he could hear in his head.  Humming along to some tune nobody else could hear.  As I pushed my cart through the store he followed me.  Humming and bouncing and stimming and twirling occasionally.  One by one the fellow shoppers stopped what they were doing to watch him.  Looking at him curiously.  Wondering what was "wrong" with that kid.   In my mind he was well behaved.  He followed me and helped me fill the cart.  He didn't fuss or complain or ask for items.

But I could feel the stares.  I saw the dirty looks.  The shaking of heads.  I am sure many of them were looking at him and at me wondering why the heck didn't I discipline my child in the store.  What kind of a mother would allow their child to hum and dance and flap his hands at a grocery store.  Well this kind of mother.  The kind of mother, who understands, that his behavior serves a purpose for his body.  The kind of mother who is allowing her son to be him.  Regardless of how it looks.

Moki

The Search For Answers

Somehow, for some reason, I kind of thought that we had won the battle.  My son is now 11 years old.  Probably from the time he was 3 I kind of knew something was, well rather odd. His speech was delayed and while his pediatrician pestered me about it, I poo pawed it.  I was in speech therapy until the 6th grade.  I figured it was some genetic thing and I wasn't too terribly bothered by it.  It wasn't until my second son got to be a toddler that I started noting marked differences with their speech.  Then he started doing something very strange indeed.  He started flapping his hands.  He started kindergarten and even though I found out later his teacher had seen several red flags, nothing was ever said to me about it.  We had moved and had a different pediatrician by this time.  At one point in a Dr's visit my son started flapping his hands.  I thought BINGO !!  The Dr had seen it and I was going to get an answer.  The reply I got was even baffling.  This well studied, well educated Dr, who I had gotten rave reviews, about simply said, "Well that is interesting".  

That was not what I was looking for.  I wanted answers.  Why does my son does this?  Why does he shut down?  Why can he not act normal   Why can he not go from task to task?  Why why why?  I had so many Whys.  Later on with a different Dr I got a diagnosis of Sensory Integration Dysfunction.  Which made sense for all the sensory issues he had with sounds, smells, textures etc.   I got a referral to the autism research center nearby.  Then I got several cold slaps of reality.  I had pretty much been told my son was autistic.  But then I was told that until the center was done with him there was nothing more they could do for me.  I found out that health insurance ( at the time) was not required to cover anything autism related.  The testing that they wanted to do on my son would cost me several thousand dollars.  I didn't have ten dollars. 

So began 5 years of everybody knowing my son was autistic but not having a "formal" diagnosis.  5 years of dealing with a rural school district who had made it clear that in their mind my son didn't have a disability.  5 years of trying to find strategies online to help my son.  We had good years.  We had bad years.  Then this past year we moved to Texas.  In a matter of a few months my son was formally diagnosed by the school here.  He has a formal IEP with the school.  Things I had given up on ever getting before I got so easily here.  I thought PHEW.   My hard work is over.  Battle won!!!

Not so fast. I am not sure this battle will ever be won.  Because even though I finally have on paper what I wanted for so long, the fact is the issues my son faces every day are the same.  Same struggles.  Now we have different issues.  Is he taking advantage of the fact he is now officially autistic at school?  How much can he control on his own?    Now that is it all official where do we go in terms of doctors and the like.  I think I feel more overwhelmed now then I ever did before.  I thought a formal diagnosis would be the end of the road.  Instead I find myself on a new road.  Sometimes I feel alone on this road.  I am not sure my husband will ever want to educate himself on the condition our son has.  We don't agree on anything it seems now that we have this formal diagnosis.  Instead of giving us the answers instead we just have new questions.  So on this road we all go.  My son is learning about what it means to be autistic.  I am learning how to "officially" be a mother of an autistic child.   We will start the search for more answers together.  And maybe one day we will find them

Moki

Letter from my son

Just a quick little mini entry today.  It is a letter my son just gave me.  He has always been a very sensitive child and there have been many times he has said comments like "You don't love me enough" " I need more love" " I hate you" etc.  Some of it I have a feeling stems from having a special needs older brother.  There have been nights when the two younger children have been ignored while I am dealing with a meltdown etc.  The project he is referring to is his Black History Month project that is due on Thursday.  That I have nagged him about doing all weekend long.  

Dear Mom,

I love the way you treat me.  I'm sorry about the times I acted like I hate you.  I love you and I know you love me too.  We have a lot in common so I thought that we could work together on my project.  Happy Black History Month.  

PS I really love you mom

Love

Kyle

Searching for Home

As I am starting this blog I have pondered what direction it would take.  I am not the sort of person who likes to be pigeonholed or labeled.  I could write for days about the daily struggles of having a child with autism.  But I am not an autism expert.  Far from it.  I have also decided to be a more positive person and don't want the tone of this blog to be negative.  So today I thought maybe this time I would take you back into my past a little. 

I have never felt settled.  Pretty sure this stems from my childhood.  Growing up on average I would say my family moved about every two years.  I was born in the desert in California but spent most of my early childhood in Washington State.  After about 3 towns there we meandered our way to small town Missouri.  Once again, after about 3 towns, we moved states again.  Oklahoma was a long stay for my family.  I managed to spend 3 1/2 years in one school.  I then was able to spend 2 years in the area in college.  I was almost feeling like an Oklahoman. 

After my sophomore year of college my parents were on the move again.  Back to California.  Boy was I happy to be back on the West Coast.  Sadly what followed were two very dark years.  I could tell my parents were getting the itch to move again.  At 22 I had no hometown.  No roots anywhere.  Two of my siblings has settled back in Missouri.  So one day we packed up a car and I headed back to Mid Missouri.

Missouri is where I put down roots.  I married a man who had never lived more then 45 minutes away from his hometown.  We bought a house in the same small town that my parents abandoned Washington state for.  I had my children there.  From time to time I would bring up the adventure of moving to my husband.  He would just shake his head and  that would be the end of it. A decade passes.  After certain situations we went from a fairly comfortable life to not being able to make it without help.  It is almost almost a year to the day that my husband lost his job.  We were struggling with it.  Without it we were desperate.  I was working full time but supporting a family of 5 on about 20,000 a year is painful.

Then one day my husband got an opportunity.  He would bring home double what I was.  The only catch.  The job was all the way in Texas.  What was ironic was we were going to be able to live in the same area that my parents had retired to.  My husband is not one for change or risk.  So it shocked me when he seriously started to consider moving.  As of June 2012 we became Texans.  Now comes the mommy guilt.  I had been able to give my children what I had never had.  A hometown.  Roots.  For many reasons the move has been good for our family.  There have also been draw backs.  My husband is longing for home.  As we come upon 10 months here in Texas we are still searching for home.  I don't know if home will be here or back in Missouri.  But I know that as a family we will find home together

Moki

The Truth Hurts

Ouch!!  That is what happens with truth hits you in the face.  The truth can be quite painful sometimes.  Recently my oldest son has started saying things like I feel like I don't belong.  He has gone on to find some cute little metaphors like " I feel like the 9th slice of pizza in a 8 slice pizza".   He is autistic.  This official truth has only come a few weeks ago.  But the real truth is this is something that I have known about my son for a very long time.  The hurtful truth is that sometimes....in really dark times.....usually in a middle of a 3 hr meltdown where my son is rocking back and forth and the only communication he has is grunting at you....I wish he was normal.  

That unspoken truth in my head is a painful thing for a mother to admit.  That you wish that your child is something other then what they are.  That when the phone rings and it is the school you don't think oh no my child is sick.  No the truth is every time I see my son's school on my phone my heart sinks to my knees.  I know that something small, that wouldn't even phase another child, has sent my child into a extended meltdown.  Or that something as small as the lights flickering has sent him into sensory overload and he the only way he can cope with it is curl up in a ball rocking back and forth and grunting.  That after 2 hrs even his wonderful aide has given up on the day with him.  The uglier truth is what happened in his previous school system with him.  That I will save for a rainy day blog.  

I belong to many online sites.  One of them is site devoted to moms.  On this site I have found some of the best friends imaginable.  On the flip side I have seen some really mean things.  The past few weeks have been posts about special needs children.  The main theme is typically along the line of why should your kid get away with "murder" at school while mine does not?  Why do you think that your kid deserves special treatment or assignments or "passes" at bad behavior?   Some even go as far as to say that the only thing wrong with your child is you and your parenting.  The painful truth is I wish they were right.  I was it was something I could fix by being a better parent.  

Truth be told I adore my son.  After years of giving up on getting a formal diagnosis.  Years of fighting schools.  Years of having people go "you should just spank him more".   The truth about my son isn't his diagnosis.  It is what everybody who works with him tells me.  That they adore him.  That he has a special place in their hearts.  What a great kid he is.   Truth is I wish everybody could see beneath the autism that makes him seem like a bad kid from time to time.  The real truth about my son is how wonderful he really is. 

Moki

Welcome to Moki's Musings

Howdy Folks!

That is apparently a normal Texas greeting, followed closely by Hey Ya'll.   I am new to Texas just as I am new to blogging.  So I am going to use this first post as an opportunity to introduce myself and my blog.  

My name is Monique but most just call me Moki.  I am in charge of a busy household with an oilfield working husband and 3 rowdy kids.  I am not joking about the rowdy, some days I feel like I am a ref in the WWE.   My kids vary from special needs to almost artistic genius to a drama queen.  It is a loud house but one filled with love.  

This blog will just be a place for my musings.  I have a love of diet coke and sharp cheddar cheese.  I am a novice crocheter and am a mom just starting the journey to understand her son's autism.  Enjoy my musings

Moki