Wednesday, May 1, 2013

Yes. My kids have Autism

*DISCLAIMER*  This is a "non stamping" related post.

When I first started my blog, I did it so that I'd have a place to write down my thoughts, feelings and memories of our family.  Mostly, I needed an outlet just for me....a place to pour out all of it....all of what comes from being a parent of two children with autism. 

As I drove home today, after my son's IEP meeting, all I could think was....Just hold it together.  Don't cry and scare Zach.  Just do what you do and bury it all.  You can burn up that keyboard tonight and pour it out and just release it for the day.  So...that's why I'm writing today.

It's interesting that every time I get the emails scheduling the next IEP meeting I generally have the "Yep, check that box" feeling.  Let's just do it and be done.  The actual meeting day(s) though are definitely a whole other story.  I woke up this morning (after not much sleep last night) with a feeling of dread.  I wasn't sure why.  It definitely was NOT my "first rodeo".  Been there...signed that.  But the dread was there all the same.  I went to work and did my job until it was time to go and the dread built as the hours ticked by.

Now....It may be that you read this and think, "Ok, really?  It's just a meeting".  Um, No.  It's not.  I've sat through so many during Linz and Zach's years in school that you'd think I'd be immune to all of the "findings" "test scores", "labels", deficits and more.  But, alas, I am not.  If you've read anything autism related here before you may remember me saying that there are times that sneak up on you when you "mourn" the loss of what might have been again and again.  This is one of those times.

You can simply click your big red "X" in the right hand corner now if you don't want to continue.  I wish I could.

I had already read the copy of what was coming up in today's meeting that they sent home.  That didn't change how I felt today though.


My heart hurts.


Not like heartburn.....not like my steady boyfriend broke up with me....

It is the most gut wrenching, piercing, take your breath away kind of pain.


WHY?

That's what I need.  I need to know the "why".  I've lived my whole life doing what I'm told.  I'm a good rule follower.  Yep.  No prob.  I've followed rules as a child....as a teenager...and as an adult.  I followed every single rule during pregnanacy.  ALL of them.

WHY?

I've loved God first and everything else has it's order after that.  I've prayed, sought God....prayed for wisdom...prayed over my children....read books...researched....fought....and fought some more to get them what they need and deserve.  Yet here I sit today feeling defeated again. 

Now the test scores were not a shock.  I've heard them before.  The reality is that Linz and Zach aren't just cute, little autistic kids anymore.  It's not about how funny the things that Lindsay says are.  It's not about any of it.  It's about the fact that they are now young adults and I have no idea...NONE...what will happen to my children if/when something happens to us.  None.  Linz can tell you the day, date and weather of the day that she got her 3rd (or 15th) Disney movie.  She can tell you what she ate on the last day of school....in 3rd grade.  But my son,.....my sweet, gentle giant...he can't tell me what he's thinking.  He can't tell me what makes him laugh.....what he dreams about....what his wishes he could do.....nothing.  He simply can't.  He won't have a first love....a true love.  Neither one of them has not one SINGLE friend that comes to visit, calls or anything.  Not one.  Can you imagine how lonely  your life would be without that??  I can't  and my children live it.  That is pain....pain deep in my mother's heart....And I live with that every minute of every single day of my life.  It  feels like pain that is eating my heart from the inside out.

Don't get me wrong.  I'm not venting looking for pity.  Not at all.  It is just unfathomable to me that I still....STILL live with the WHY and the WHAT CAN I DO all the time.  I want to FIX it.  I  NEED TO FIX IT.   But....no.

Tonight I'm sad and heartbroken.  I feel like I'm being suffocated.  I can't breathe.
So many people have said, "You are such a great mom", "I don't know how you do it", or....my favorite, "Oh, sweetie.  God would never give you more than you can handle".  Really?  Really????  Live in my shoes for about 6 months and tell me just how soon you're ready to cry "Uncle".
I know that people mean well.  Those people just want to be "supportive".  But....Let me just set the record straight.  Mothers of kids with special needs do NOT want to hear that....they do NOT want to hear that "God only give those special children to his toughest warriors".  No one could understand what lives within me 24/7.  The pain that doesn't stop every time I watch other parents and their children graduating....getting married....having grandbabies.....giggling about being "empty nesters".  Tonight....all I can actually do is pray that God sees fit to live me and Mike live really long lives. 

Tonight I'm angry.....I'm angry at autism....at God....at the schools.....Just plain mad.

My sweet Mama came down this afternoon because she knew....she just knew.  She is truly THE strongest woman I know.  She is faithful and loves GOD and her family first.  She puts everyone before her own needs.  She sat with me out on my deck and listened to me cry....she cried and shared her heart....and she was what God intended her to be.  The most amazing example of what a mother should be for me.  I know it hurts HER heart to watch me feel this way.  Fortunately, she loves me and always has my back.  I love her and my dad more than anyone could possibly imagine.

Unfortunately, Mike is on travel for the night and he's called several times.  He felt horrible for missing today's meeting.  His heart hurts too.  I thank God every day for sending me such an incredible man to share not only my life but to be the most amazing father for our three children.

If you've braved it this far and are still reading, I apologize.  I just really need to be able to write this down for myself.  I feel wounded....seriously wounded tonight and I don't want to even put one foot in front of the other to make my way up to bed.  Unfortunately, like in so many other areas, I don't have a choice.

I pray that God will send his Holy Spirit to minister to me while I sleep tonight.  I need something before I face another day tomorrow.

Please keep us in your prayers,
Michelle

28 comments:

  1. With all my heart, I pray.

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  2. Michelle--
    You have every right to express your feelings. Actually, you need to do this. My granddaughter has Asperger's which is a mild part of Autism. I'm still trying to understand it. But, I know it's not an easy thing to deal with. You have to know that your are strong, even though you feel weak at times. I really and truly can't imagine what you are going through right now--only that you have support from parents going through it. Ignore the other people who have no understanding. Just repeat--"We (meaning your children and you) can get through this" and 'Believe', as you really don't have any other choice. It is probably a life long thing but I believe in you and I hope some day you'll be proud of not only your children but also of yourself.
    Good luck to you! Karen

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  3. Hi Michelle...I am the behind the scene as they say follower of your blog. I know you are not looking for pity and I am not going there. I just wanted to say I love your blog and never had any idea about the real woman behind it. Wow you have been and will be through a lot. I hope the Holy Spirit has given you some comfort and has wrapped his arms around you.
    I am thankful God gave you such a wonderful Mother to be there for you. A loving husband who is a great Father.
    I sure pray today is a better day.
    God Bless you!
    Vonnie

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  4. Hi Michelle
    I am an autism intervenor in the school system with all their IEPs, tests, etc. and totally 'get' what you are saying. I will say though that mothers like you are a rarity because so many of them just give up. Hard as it has been, always remember that you have made a huge difference in the quality of their lives. Prayers and blessings,
    Irene L.

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  5. As I sit here wiping my tears, I wish I could reach thru the computer screen and give you big hug... I wish Pixie Dust would make everything better... But wishes don't always come true, so instead I'll pray for you and your family...

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  6. Michelle, You and your family are so in my prayers. May the Lord grant you His peace!

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  7. I will pray for you and your family. I always wonder, too, why little children have to suffer in this life. I don't think I will ever understand. Everyone just goes through life day by day. One day you will look back and wonder how you did it, but trust me you will do it. Big Hugs!!

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  8. I'm sending you a big hug. I understand your pain....how your heart hurts. May God give you some peace.
    Jeanie Young

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  9. Michelle thank you for sharing. Your posts inspire me to be a better person. No words I can say will help you in your stressful time but please know I am praying for you and will read and support you in every post that you need to write. Please NEVER apologize for writing what your heart needs to share.

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  10. No words I type will make you "feel better".....instead just know you do touch others by sharing your truths and please don't apologize for that. If someone doesn't like it there are many other blogs there. Instead you inspire many with your truths and your talent. Prayers to you.
    Denise

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  11. Thanks for writing my thoughts! My daughter has Autism and is 40 years old. We have worked with so many great people (and some real duds)that we have met because of her and Autism. Those meetings really have a way of bringing you down after you have heard the same things over and over but since we are always on the search for new ideas and ways of dealing we continue to go and smile as we listen. I'm not sure if what I'm saying makes sense but I wanted to let you know you are not alone in your feelings and to thank you for sharing your (and mine) thoughts.

    Cheryle

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  12. I don't know your pain and don't pretend to understand what you are living thru. My heart aches for you and tears are flowing as I try to type. Sharing our pain, as well as our joys are what makes us Mom's. I lost an adult child (who still lived at home, like he was 12) to an auto accident and have come across many of those "good" meaning people too....they do mean well and you have to give them credit for at least trying....many just walk away and don't say a word....how sad for them. They will never grow or love the way we do. Your children are indeed lucky to have you, don't feel weak because you cry or mourn or wish things were different. You are you and that is that. Cry when you want to and shout at God when necessary...he does understand. May you find peace today as you go thru the day...hugs and prayers.

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  13. Right there with you - struggling on a daily basis. I can't understand why my son doesn't care to play with other kids, he just sits there and does nothing while everything goes on around him. Baffles me, breaks my heart. I can only tell you that I appreciate you sharing your thoughts with us and you have put into writing what a lot of us autism moms are feeling. Thank you for this and I will pray for you and your family!

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  14. Hugs and prayers for you and your family.

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  15. Michelle - thank you for sharing your heart and soul. I too have felt the heartbreak of children hurting, the questions to God and the pain of watching others float through life (seemingly). I am glad for you that you have a godly mom and dad to be there for you, this is an unmeasurable blessing from God. You have spoken truth to the blog world in your post - a truth that needs to be told, heard, and listened to. Compassion is hard to find in the world today. I can see from the other posts that you have been offered some. Praise God for His saints that can hold up our arms when we are weary! I have always found comfort in the bible verse "Jesus wept". He knows the pains of the human heart.

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  16. Hugs Michelle and to all of you.
    Debby

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  17. I can't begin to tell you how incredibly touched I am to read all your words of encouragement. Your love and understanding for me and my family. I pray God's richest and most bountiful blessing for each and every one of you and your sweet families.

    Thank you for being a blessing in my life.

    Much love,
    Michelle

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  18. All I would have to do is change the children's names to Collin and Victoria, then cut and paste your letter, then sign my name. Every emotion, thought , wish and prayer you've expressed is my life. I wish I had the understanding family you have. I'm so glad I found your blog!! I know now that I'm not crazy for feeling the way I do. Very few understand. You do!

    Thanks for sharing your feelings!

    Marlene B.

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  19. I'm sending lots of love and prayers to you, my friend.

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  20. I too feel your pain. I also have a 40 year old daughter with Autism. I feel that you must take one day at a time and pray a lot along the way. This child has helped me see the world in a differ light. We must let them help us enjoy life thru their eyes. I will not ever said that this life is easy, but I would not trade it for any thing. Keep searching for new ideas and ways to cope. May God bless you and your family. We will keep you in our prayers.

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  21. Michelle,

    My name is Christina and I too have a son with Autism. I get the same comments as far a people stating "I don't know how you do it". Well I do know and I have been in the same situations as you have. So many IEP meetings. My son is now 21 years old and we got him hooked up with a program called Community Workshop Incorporated (CWI) What a god sent. They actually have day programs that he can attend and we have services they provide called respite. We have people come into the house and work with him so I can actually take some me time. What a god sent. I really understand your struggles and feel your pain. I have had many crying sessions myself. When I read your article my heart ached for you as I have been through the same situations. It actually does get better as they get older and if you can hook up with some of the government programs or parent support groups it helps so much. I'm not sure where you live, but I live in New York State and I never realized these programs were there at first. I actually attend some group meetings for parents with special needs children and got so much information. I actually got a lot of information and a direction to follow that it was so worth the minimal fee I paid. A lot of the meetings that are in our area are free for parents to support each other. If you ever need to vent please email me and we can kinda compare notes. I so realize the ups and downs you are going through. My e mail is mskitty6667@yahoo.com. If you need help researching the options that are out there maybe we could search together. Two heads are sometimes better that one and I know while my son was growing up that all the support I could get was just what my son and I needed. I will keep you and your children in my prayers. God Bless.

    Christina Colegrove

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  22. I, too, am painfully aware of the stark contrast between the ephemeral art we share and the all-too-private vigilance we keep for our autistic sons and daughters.
    As for the folks who quip, "God would never give you more than you can handle" -
    They may not recognize Satan - and "fear no evil". But they won't know how it feels to defeat that evil, again and again, as we do. By their own admission - they are not "handling" that fight.
    You are the Captain of your kids' team - ignore the spectators.

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  23. My prayers to you and your family. You are an amazing woman and mother. I do not pity you, I am in awe of your strength. Thank you for sharing with us.
    Nancy

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  24. Your post was very touching. I am praying for peace and understanding for you and your family.

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  25. I would like to converse with you via email or by phone...please email me at escaladymom@aol.com
    Thank you, I hope that we can visit!

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  26. Michelle--just found your blog through pinterest (looking for some ideas for a punch swap at convention), watched your video and so enjoyed your sense of humor and ideas that you shared.....then read this post....thank you. I'm a teacher--1st grade--and this was such a good reminder of how parents feel coming into an IEP and a reminder that as educators we don't always understand that. Blessings to you and your family as you struggle with these hard unsolvable issues--I wish it was fixable, but like so much in life we have to live, work, trust God and most importantly love within the hand we are dealt-- like it or not. Dawn Hoffman

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