Wednesday, November 9, 2011

Just ONE Day.....Please???

**This post is NON Stamping related**   This is an AUTISM post  Be forewarned.


I know there are those of you who written me notes saying that you relate to my blog because either, like me, you to have 1 or more autistic children or you have friends/family that do.  I thank you for your kind words but today's post is definitely the "weaker" side of who I am as the mother of two autistic kids.

Zachary....my son......Here are words that I think of when I try to describe him...

Sweet
Loving
Funny
Smiley
Tall
Smart
Talented


That being said, today I sit here pulling my hair out.  I'm sure my mom will read this and say, "Oh....NOT our Zachary!"....  Well Mom....YES, our Zach.  Our Zach is the one who has me sitting here not able to type fast enough to keep up with the thoughts in my head.

Zach rides the bus from the high school in the afternoon and is dropped off at the school where I work (about a mile away)  He comes in and it's right at the end of our day so my students have packed up and are waiting for dismissal.  Zach comes in...keeps his backpack ON.....and goes into our tutorial room and starts his list.  What list??  What the 4 lists that he writes exactly the ssame every day.  He lists all FOUR Disney Theme Parks and then makes a detailed list of ALL the rides at each part.  (Their PROPER names....no shortcuts)  That makes him happy so Woot!  All is well until we leave school to head out for the evening.

Oh things are just fine and dandy IF I am heading STRAIGHT home.  Do NOT PASS GO....  and make the same turns onto the same roads!!!!  He makes comments over and over and over and over if I go different ways.  Well, let me just say that I've NEVER been a mom that takes the easy route all the time.  When he was younger he would cry the entire time we were at a very large shopping mall we frequently visited IF and ONLY IF we didn't park in the exact same lot EVERY time we went.  So I decided I was going to NOT park there all the time....I was going to change it up and try to win a battle for once....."Take on for the team"....you know.  I wanted him to get past it and be more comfortable knowing that no matter where we parked it would be ok and we would still go see his favorite spots inside the mall etc.

Well....eventually....and a LOT of gray hair later....it has worked and that is no longer an issue. (the majority of the time)

Ok....so I digress....but it's important for my rant.

Fortunately for me, the school where I work is surrounded by a lot of the stores, the bank and places that I frequent and it's SO convenient to be able to just stop there when I leave work at 3:15 on my way home to get things if I need them....make a deposit etc.  None of those places are near our house and it seems ridiculous to me to take Zach all the way home and then have to back track.  I mean SERIOUSLY??

So today I needed to stop at ONE place....JUST ONE PLACE.  It happened to be Dollar Tree.  I thought "Ok, it won't take me long and I'll buy him a bag of M&Ms and he'll hang on til I'm done and then we can go home."  SUCKER!!!  Boy, was I wrong.  Now Zach doesn't really "Talk".  He has some vocabulary and sometimes a word or two will come out that almost seems appropriate to the situation but that's not a given.

I have NEVER had a conversation with my son.  Ever.  Not having a pity party.....Just stating the truth.

So when we went to Dollar Tree it was a nightmare.  Now he doesn't scream....he doesn't throw fits....but I can tell when he's NOT happy.  I told him everything....prepped him....promised the M&Ms.....  When I pulled into the parking lot in front of Dollar Tree...before I even got to the parking space....he reached over and unbuckled MY seatbelt.  I said, "Zach!  Don't unbuckle my seatbelt.  You can unbuckle yours when I have stopped the car"  I don't want him to start thinking he can do anything to the car while I'm driving.  I have no clue what his concept is of what goes on in a car but I'm not sure I'd like to risk it. 

Well that started it.  He started repeating over and over "Don't do it!  Mom do it...."  Then he makes these squealing noises that while they aren't "loud" they will definitely draw a lot of attention when we are in public.  All I kept thinking was, "Ok...I only have 6 things on my list....just 6 things....I can do this".  Well he made sure it was NOT easy.  All through the store...."Don't do it!   Mom do it!.....squeal....squeal.....squeal........" etc.  over and over and over and over and over again.  No lie.  So we got lots of glaring looks.  I mean here's this 6'5" towering teenager who is obviously NOT happy.  Quite a sight to see for sure.

I just wanted to scream.  But what good would it do?  He didn't understand what it was I wanted or what I needed him to do.  He only knew that he was NOT happy and I was the cause of it.

I know there are a lot of you who read my blog and you know me personally and you'll understand what I'm about to say and not condemn or judge me for it.  For the rest of you...I hope you can too.

Right now is just a time when I feel mad at God.  What did I do??  What do you WANT me to do that I'm not?  Just tell me!!  I'll do ANYTHING.

I know....some reader's hair just caught on fire somewhere.....  I am...I'm mad.  And I think that's okay because God loves me no matter what and he loves me right where I am.  I just want to yell, scream and cry and get it out so I can just get back up....dust myself off and keep on fighting this ugly beast called AUTISM.

Just a day.....ONE day...... 24 short hours.....That's what I want.  If you can't show me a cure for this dreadful, hateful disease that has robbed our family of so much then just let me hear his voice and let him share his thoughts....his dreams.....his frustrations....ALL of it with me for just one short day.   I don't need a fortune....I don't need to be famous.... I need nothing...I want.nothing....ABSOLUTELY NOTHING more than to talk to my son and have him talk back to me. 

I've often said that when you have a child diagnosed with autism it's not something you mourn once and move on.  There are many, many, many times (and a lot of them will sneak up on you) that will cause you to mourn the loss all over again.  Things you take for granted with your other kids.....the little things.  Today I find myself mourning.  Sorry if that sounds dramatic or like I'm just being a wuss...  it's just the way it is.

Just one day, God.  Please?

13 comments:

  1. There is no way that I can say that I can even begin to understand how you feel because I've never had to deal with Autism. I can say that it is okay to get mad at God and express your deepest emotions to Him about how you feel. I'm pretty sure he can take it, and even He tells us: "cast all your cares [frustrations & anger] on Him because He love you."

    For what it's worth my heart breaks and hurts with you each and every time you share what you face concerning your challenges with Autism. I would that I could take all this from you and bear it for you for just ONE day and in doing so fulfill your wish of knowing ONE complete day - 24 hours - of complete peace within your soul.

    The only thing I know that I CAN do is to continue to pray daily that God will give Zach a new clarity of mind that he's never experienced, and the ability to converse with you like Linz is able to do with you.

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  2. I'm living your life, only with a 39 year old daughter. So much of what you say goes on in my life too. Wouldn't you just love to get inside your son's brain just one time and see what is going on in there and see things the way he does?

    Cheryle

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  3. Wow why did I stumble upon this blog today of all days. I guess some one thought I needed to read it. My granddaughter has autism and today was not a good day for her either. We watch her after school she is just 4, she fell asleep and Mom came home from work to pick her up and Daven was crying and not cooperating. My heart was breaking for Daven and her Mom she clearly was not happy and no way to tell us what is wrong, and poor Mom was tired and just wanted to go home and rest. All I could do was hug them both and pray that it would pass soon. I have many days that I mourn like you for my son and his family and my sweet Daven. Know that you have others out there that share you same feelings . Sending cyber hugs to you both.

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  4. Psalm 29:11

    "The Lord will give strength to His people.
    The Lord will bless His people with peace."
    You are so right - - he loves you right where you are. Hang in there, because all He requires of us is to love Him and each other, and you are obviously a very good and loving mother. You have been prayed for this day!

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  5. Sending prayers your way. Your children are so blessed to have you as their mother. Hugs, Barb

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  6. Dear Michelle, you have touched my heart very deeply and cause to elevate my prayers for you today. I hope that right at this moment you feel Gods hands wrap around you giving you strenght, comfort and love. You are so very right when you say that HE LOVES YOU no matter what... He gave his life for you. You are an amazing mother and your children are blessed to have you as their mother. I have always admired you. Know that you are loved and prayed for... Love, Lizzie

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  7. God never gives you more than you can handle..Sometimes I feel that I am a football linebacker. I SOOOOO understand how you feel..Find joy in the little things...

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  8. I feel for you, I can't understand what you go through everyday I can only say that your children are very lucky to have you as their mum.Continue to rage at God he has the strength to take it God Bless you all

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  9. I can't begin to put into words what it means to have such awesome friends. I sincerely treasure your encouragement and prayers and I pray blessings beyond measure for you and the ones you love. <3

    M.

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  10. Hello - I laughed and hurt for you over this post. I agree that God knows your heart and he loves you. I can't imagine what you go through on a daily basis. I took care of my mother, who had Alzhiemer's Disease and that is another disease that you have to mourn over your loved one time and time again. But mine was different in that I had all the good years of her life to remember and some times that was all that got me through it. I will continue to pray for you and your family in this challenge God has given you. Please feel the positive feelings and emotions being sent your way.

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  11. Hi Michelle, I can't begin to understand what you go through on a daily basis with your children. I was blessed with two "normal" children and they have ME doubting my mind from time to time, let alone anything else! Just wanted to encourage you and say that I believe, as you do, that God loves you, even if you get mad at him every once in a while. I will pray for you and for your "24 hours". My warmest wishes and thoughts are being sent your way. Thank you for sharing not only your wonderful crafting abilities with us, but also your life and struggles. God bless you and your family.
    Jackie Hart from Canada.

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  12. Dear Michelle,

    You are a wonderful mom and a wonderful person. Only a mom who loves passionately could feel the way you do, and you have a gift of writing to be able to express those feelings as you do.

    I don't have any magic answers or lightening bolts from heaven, but I will keep you in my prayers - you and your family. When I'm faced with questions I can't answer - God questions - I always say I'm going to put them on my list. When it's my turn to enter the pearly gates I will find a way to sneak that list up there with me. Until then I just have to trust.

    God bless each of you.

    Anne

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  13. Michelle,

    I happened upon your blog because I loved your creativity. After reading this post, I also find I have more in common than the love of manipulating paper. My son also has Autism. He is almost 5. I write often about grief and mourning and how I wish N would be able to speak and tell me his thoughts like he once did. Some days are better than others, but some days are unbearable. So if it helps to know you are not by yourself, you aren't. I'm sure you know that by now. God knows your heart and your intentions so vent away! I believe as an Autism Mom we are entitled to at least that. Otherwise we would go insane. Many blessings in your journey and continue to express your creativity with us all! :) Tracy

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