What I'd Like For You To Know: A Mom of Autstic Children

This is the first installment in a series I'm hosting called "What I'd Like For You To Know".  You can read a little more about the idea behind the series here, and there will be a new installment each Thursday for the next several weeks.  Today, please welcome Arianne from To Think Is To Create.  She's an accomplished blogger and the mother of three in Chicago-land.  Two of her sons have autism.  Here's what she would like for us to know:

When Shannon asked me to guest post, and to write about "what I'd like for you to know" about my family and our journey with autism, I was thrilled.  Besides the fact that it's exciting to get an audience with all of you fine people, the truth is that I have never been asked this powerful and insightful question before.  Most of the time people either don't think to ask what I wish they knew, or they think they already know and there's no need to ask.  I humbly accepted her invitation, and hope that after today you all understand the world in which I walk a little bit more than you did before.

Day to day my husband and I share many of the same thoughts or statements about what goes on around our house.  Lately as we watch son #3 regress and show us that he, too, is on the autism spectrum, the shared ideas have been much along the lines of, "Really? A third one?!".  We know in our hearts that it's meant to be, and that God prepared us to be the perfect parents for these three amazing children, but we are human, and if we think about handling this life on our own we get royally freaked out.  Our days are hard.  Very hard.  And that is something we often say to each other, "I wish people understood how hard this is".  I say that with the 100% hope that you all understand that I am not trying to garner sympathy, but instead simply to gain your understanding.  To "get" us.

Our friends and family know that things are hard for us, but unless you are living this life 24/7, it's very difficult to describe or to fully grasp what goes on.  I could go into detail about the rigid life we are forced to lead, the tantrums that are so sad and hard to deal with that we the parents sometimes cry more than the kids, the sensory issues affecting simple things like getting dressed or bathing, or the profound food allergies and refusal to eat anything most days.  However, all that could be a book of details and stories and laughter and tears, and there isn't enough space here for all that.  All those details make up much of our lives, but what we really wish you knew is what it's like to live with all that, and, for the most part, to have no idea when or even if any of this will stop or go away.

Most of the time we are walking on eggshells, just hoping to stretch out our tiny steps long enough so that we don't break anything underfoot.  Their sadness that follows a tantrum, the heartache of realizing that none of this is their fault or something they can control.  The grief for how they "should" have been or grown up to be.  It's all so fragile.   I don't think many people know what it's like to live with constant angst on the faces of your children.  The feelings of helplessness that come up from deep within us are often overwhelming, but somehow just to know that you all know, and understand, would make us feel supported.  Loved.  And that perhaps we aren't quite so alone.  On our weaker days it seems profoundly unfair, that "normal" families deal with none of this.  But on our better days we rejoice in the gift of raising these special boys.  Thankful for the faith that God has in us alone to parent them, to love them, and to shepherd them into the lives they were made for.      

As I talked with my husband about this topic, and what else we'd like you all to know, the second most important thing that came up is that you should know that autism is not the child's fault.  You may have read that and thought, "of course it's not!", but have you ever seen a child acting out at the store, or acting weird at the bus stop or the playground and wondered to yourself why the child didn't just stop acting like that?  Or wondered why the parents didn't just get control of their child?  I have to admit that we don't frequent public places with my boys that often.  It's so much work, and we're so exhausted every day, that we typically leave the circus for another day.  But when I do venture out, I can't help but see the looks of others around me when my boys do something funky or socially "inappropriate".  I want to tell the gawkers that my boys aren't badly behaved, but that they can't help their actions.  I want to scream that they wouldn't be this way if they had a choice.  That they'd give anything to feel normal for even one day.  Almost all of the behavioral symptoms of autism have a bio/neurological cause, and therefore can't be controlled except with intervention.  Even down to the flapping of hands, head banging, tantruming--all of it has a cause.  Believe me, there are days that it's hard for us to even remember this, because it's tempting to get angry when things happen--yet again, but we have to slow down and tell ourselves "he just can't help it", and move on.  I hope you can too. 

Finally, as you work to understand us better, and learn that the autism you see usually can't be controlled, we also ask you to teach these things to your own children.  Chances are good that your child will be interacting with and going to school alongside someone who has autism, and so our hope is that the children can learn about their funky friends, can understand them, and can accept them.  My boys are often stared at or avoided by other kids because they are different.  They are still young, but I wonder what the future holds as they enter grade school, then high school, and so on.  Will they ever be understood?  Will they be accepted?  Teaching your children about autism, and why these kids are awesomely gifted and smart and why they should be loved, is the best way to prevent the teasing and the blacklisting that has been happening way too often lately to autistic kids.  With a little time and understanding, my boys make incredibly fun, loyal and hilarious friends.  They have the ability to do this, they just need to be given the chance to show themselves to the world.  To be someone's best friend.  To be someone's soulmate.

Many times families with autism wouldn't mind sharing their suffering with someone.  Not just to have a pity party, but to talk about the realities of "what it's like".  Don't be afraid to ask questions, lend understanding, and pass it all on down to your kids.  Our family is acutely sensitive to all the little details that make life so beautiful.  We need you, now more than ever, and we know that you need us too.

Arianne blogs at her personal site To Think Is To Create, and you can subscribe to her feed here.

Comments

[Troye]

Thank you, Shannon for hosting this. And, thank you, Arianne for saying what every parent of autistic children wants to tell their friends and everyone that he or she comes into contact with (including their teachers sometimes). Ditto, ditto, ditto!!!

[Mrs. F]

What a great post. This is something that I am sure SO MANY of us would not have otherwise known!

[Llama Momma]

I cannot tell you how helpful this is. Thank you.

[amyh]

Great post. My nephew has autism and I know my sister has spoken on the topic of education many times. So true.

[Jackie @ where the boys are]

Thank you so much for sharing this. It certainly puts things into perspective and hopefully encourages us all to repect the differences between families and the different levels of "normal" that we all deal with.

[Jenny]

What inspiring and encouraging words! Having not ever encountered this myself, I will definitely now think twice before EVER pass judgement on someone's 'misbehaving' child. Thank you so much for opening my ever so blind eyes.

[Paper Bridges]

Hi, Arianne. We have an autistic boy at our church and I often find myself trying to explain to my kids how he's different, why he sometimes acts the way he does. He really is a nice boy and if you watch the pack of kids play football - he's hard to pick out of the crowd.

His older brother does what typical older brothers do - tease and bully. It gets my Irish up to watch, but what can I do? So I tell my boys to be this young boy's defender. When you see someone else being mean - stick up for him. I'm not sure why I'm telling you all this. Maybe to let you know that there are parents of "normal" kids trying to help in whatever way we can.

God bless,

monica

[Julie D]

Thanks for sharing your story.

[Adventures In Babywearing]

I know this couldn't have been easy to write, but I know that it will help so many understand just a glimpse, a little bit more than before. You're doing a great job in the trenches, in the meantime.

xoxo
Steph

[Jennifer (Et Tu?)]

Wow, Arianne, thank you so much for sharing your story with us. You've given me a lot to think about. I look forward to checking out your blog.

[Kari]

Thank you for sharing your story. You have so encouraged me today and I pray that doing this will also encourage you!

What an awesome idea Shannon, thank you!

[Robin]

Shannon,

What a thoughtful, generous and wise choice to share your audience with Arianne and the others who will follow her on Thursdays. It's giving voice to those who have important things to offer but who might not have as large a readership.

Bravo to you...off to visit Arianne :).

[Lizz @ Yes, and So Is My Heart]

Shannon, this is such a wonderful idea.

Arianne, that was so good to read. My oldest is three and I've been thinking about how I hope she isn't one of the children who leaves out others. Now, I feel I have a bit more to share with her and others.

[cattailmama]

Arianne-

Thank you for sharing a part of your life with us. I talk with my kids often about including others, even if they are different. I have no time or patience for bullies. I pray God will meet every need that you and your husband have while raising your boys.

[Laura]

Shannon - THIS IS A GREAT IDEA/SERIES!! Thank you!

Adrienne - I'm so glad you participated in this series! I've been struggling personally with my daughter's autism a lot lately. Not as much with her or the challenges she faces, but more with how it limits, restricts and affects our whole family (and how other people just don't understand). I appreciate your words and heart! At a time when we feel pretty isolated socially, it is always good to hear another family talk about it in such a clear way!

[Karen]

thanks so much for bearing your soul. children with autism hold a special place in my heart. i have the great pleasure of working with them as a music therapist and they bring me so much joy! i know that you have an incredible task ahead of you, but i was so encouraged to read this post. may God bless you and your family!

[Tabitha]

Thank you for sharing with us. As a parent with a child in the autism spectrum I get frustrated at the looks of others when my child is misbehaving. I am doing the best I can. I don't know what I'm doing because all of this is new and books can only help so much.

[threeundertwo]

Hugs ((Arianne)) Thank you for such an informative, heartfelt post. I'm off to visit your blog now. I've learned a lot today. This is why I love blogs. I hope blogging helps you feel less isolated. I, for one, will be thinking of you and your family today.

[Marian]

Thank you, Arianne.

One of my children is also autistic with other issues.

It is so hard to find understanding, and nearly impossible to ask for it without sounding like your complaining or asking for a pity party.

My son no longer stims in obvious ways, so there's nothing that physically marks him in public as anything but an normal kid who is awkward, ill-mannered, loud, and--let's face it--in the eyes of many, very poorly parented. He is my eldest, the example to the younger, and so his behavior even affects theirs sometimes.

The thing that seems so unfair about many public judgements is that the behavior many might see and judge as bad and the result of bad parenting, might very well be amazing improvement, the results of years of work-- more intensive parenting work than any of them has EVER dreamed of giving to that particular issue!

I wish people could understand the incredible load of therapies, supplements, special educational needs, endless meetings, the hours of research, and the sometimes overwhelming out of pocket expenses. That just "dropping your child off" for something is never an option. I wish they could understand the complexity and ambiguity in it all, especially with high functioning autism, and that there is no hand-holding from professionals who know exactly what to do, as with most other conditions, nor any idea of how they will be able to function in life. Every child is different, a unique puzzle, unlike the others on the spectrum that a person may have met.

I wish they could understand the emotional load of all of this and the child's daily angst in family life. And the emotional burden of seeing him struggle mightily with a tough, "so close and yet so far" existence, wondering if he'll make it through the self injurious behavior and wishes to kill himself...

Anyway, thanks for writing. (Looks like I'll have to turn this into a post of my own!)

[Tina]

This is wonderful! While I do not have children with autism I have several friends and close neighbors who do. Your words are of love and encouragement and understanding. Thats how folks need to see kids with autism.

[Nicole @ Life in Progress]

Arianne,
Thank you so much for sharing this. It's so very important. I especially like how you talk about teaching our children to understand autism.

I pray for God's blessings on your family!

[margalit]

I have friend that have three children, all on the spectrum. The oldest are boy/girl twins where the boy is non-verbal and the girl is profoundly gifted/Aspergers. The youngest is also Aspergers. I've known them since the twins were infants and have watched for 16 years now the struggles this family faces every day. Their house is a mess, the family meals would drive a sane mom to drink (talk about your short order cooking!), just getting out of the house with these kids can be impossible. But they do it. Dad is a Rabbi and they take those kids to shul every week. I think they're the bravest parents I've ever met. It is SO hard and really, no matter how much all of us outside, both family and friends, love this family and offer help and support, it's never enough.

Years ago, when the mom used to go out with the kids and they would act up, she would put on a big button she had made that said "It's NOT bad parenting, they are all autistic." If one person gave her the evil eye she would just point to the button and that shut them up.

I also have two disabled kids, one on the spectrum and one who is bipolar/ADHD, and it's tough. But nothing compared to what you must face daily. My hat is off to you!

[Teresa]

What a wonderful idea Shannon! Reading this has convicted me, inspired me and moved me to tears. Thank you Arianne for sharing your heart so openly.

[Katy]

Your boys are so very lucky to have been given to you and your husband! Thank you for sharing with us!

Katy
http://mynutvillage.com/

[MamaHenClucks]

Thank you so much for hosting this, Shannon.

Arianne, your words moved my to tears this morning. I appreciate your transparency in sharing what life is like for your family. I want my kids to be the kind of children who WOULD befriend your sons. Thank you for putting a little perspective on the difficult job that you are doing.

[Kimberly Coleman]

Thanks for sharing your story. It helps me to keep it all in perspective when my oldest son (who doesn't have autism) is overly emotional/acting out. You are definitely the right mom for your sons and kudos for educating the rest of us!

[Deb]

Shannon - GREAT IDEA

Arianne - Thank you for sharing your story. Your strength, compassion, faith and grace is inspiration for me to be more aware of others needs.

[Donnetta (momrn2)]

Being the mother of a child with sensory issues, this post touched me deeply.

Thank you for writing from the heart and for the courage you exhibit as you love and care for your boys every minute!

[Erin]

What a beautiful reminder of what we need to think when we see children doing something "different". I am a mom of an adopted daughter with special needs and I can completely sympathize with you. I admire your strength and appreciate you opening your heart and sharing your story.

[Lori L.]

Thank you for sharing, Arianne. This was beautifully written, it touched me very much. God bless your sweet family :)

[Jennifer, Snapshot]

Shannon--thanks for highlighting these issues for us.

Arianne--thanks so much for giving us a window into your world. I know that each of us are either dealing with a child who is different in some way (aren't they all?) and know someone who deals with much more than we do. This helps us all to relate and cope.

[Jenni]

Arianne, thank you so much for sharing so honestly what life is like for you, and for giving us practical advice on how to be helpful to those around us walking in your shoes. I have relatives on the spectrum, and I pray that the world will be a kind place to them, beginning with myself and my children!

Shannon, this is a fabulous idea! I'm looking forward to all the posts.

~Jenni

[zoom]

Bless your brave heart.

I did not have children of my own, but have a step child that had a brain aneurism at age 19. She is now 39. To explain one's child's odd behaviour when they appear "normal" is so heartbreaking , difficult, puzzling and at times embarrassing.

Ferreting out what to hold the child/ adult accountable for and what they cannot help is mind- boggling. Helping her forge bounderies at times brought me to my knees.
Our friends with children her age want to hold her to the same standards as other young adults her age. I have been told more than once by people who are inherently good, "how on earth to you stand it?? "

By God's grace is my answer. I can honestly say that love does conquer all, and I do love her with my entire being.

My best to you Arianne.

[Megan (FriedOkra)]

Big hugs - Arianne. Beautiful post. You are literally writing your lil heart out this week, aren't you? So proud to know a Mama with such a gift, such passion, such spirit, and a writer with such insight, intelligence and authenticity. You'll bless many, many parents and children with this God-given combination.

[Rachel]

Years ago, I taught adapted phys ed to autistic children. My focus was always "what will make them smile?" It made my job easier when I figured that out. Jumping, swinging, parachutes, scraves were all wonderful things that they loved.
You are an awesome writer and I think what you're doing is fantastic.

[Kelsey Smith]

Wow What an amazing post! When I was really young I befriended a boy who was autistic and your right he was so loyal to me. Now that we are older he has gotten married and is a father to 3 young children. He is an amazing man and Im so glad I got the chance to befriend him!

[Shannon White]

What a wonderful thing to be reminded of. My husband is a Behaviour Specialist and specializes in autism. Even though this is his job, I don't know if we have spoken to our boys about this yet. I will do it today. : )

[oh amanda]

Beautiful post! I love hearing it straight from your heart!!

[Katy Lin]

Thank you for sharing this Arianne. I admire your courage and your wonderful attitude :)

[Aileen]

What a great idea Shannon.

Arianne, thank you for sharing your story.

[bee]

Wow! I'm glad I know that now!
Thanks for sharing!

[Polka Dot Mommy]

Thank you for sharing this! For the past 9 months we have watched our youngest daughter regress in many ways and we have begun to look for answers. It is looking likely that she falls under Aspergers in the Autism Spectrum. The frustration is incredible... I cannot fathom doing this three-fold. You are amazing.

-Jamie

[Liza's Eyeview]

This post is excellent and enlightening. My daughter and I read together a book called RULES (I forgo the name of the author but it's a chapter book for kids about grade 4 onward...) that book RULES gave the two of us a better understanding of what family (especially siblings) of an autistic child feels and go through.

[Prairie Rose]

Thanks for posting this, I love being able to have the opportunity to see what it's like from a parent's perspective. As an early interventionist, I frequently work with children diagnosed with autism, and since they're so young, am usually involved in having to be among the team telling the parent for the first time that this is what is wrong with their child. Hate that part of the job, love the opportunity to be able to be part of helping the child and the family. But I often wonder how to relate to or help the family better as far as dealing with the diagnosis and the issues resulting... I try to put myself in the parents' shoes and think, if it were my child, what would I want specialists to do and say? but since it's NOT my child, that can be hard. What would YOU like for the specialists working with your children to understand, or to say or to do, to best help you and your children?

[Becoming Me]

Thank yo so much for sharing your heart and opening my eyes and many other eyes to the complexities of autism. You are a beautiful soul. A thank you to Shannon for hosting this precious series.

[jen]

Arianne, Thank you for this post. I especially needed the reminders to talk to my own children about these things. Will do.

Shannon, Might you be able to title the posts with the content (i.e. What I'd Like For You To Know: Having Children with Autism)? Makes the title long, but I think it might be helpful for those who might want to reference these posts at a later time.

[Shawna]

Wow, Arianne, my heart goes out to you. I cannot imagine how difficult your daily life must be, and the heartbreak you endure. I

know, too, that God chose you and your husband especially for your precious boys. What a gift. EVERY child is a gift from God. I pray His blessing and His hand on each and every one of you and your lives.

:0)

[Katie]

So excellent, Arianne, thank you.

[Suzanne Eller]

Thank you for opening your home and showing us your life, and that of your sons. "Walk a mile in someone else's shoes" is more than a saying, it allows us to grow and to understand, and hopefully to be supportive instead of hurting you in an already-difficult moment. Blessings on you, your husband, and your beautiful children.

[cobblestones]

Thank you Shannon for thinking to ask this question. I tried to imagine what it would be like if one of my friends ever asked this...and I decided it would make me feel VERY loved and supported :)

Thank you Adrianne for being transparent and writing with grace and compassion. Tears stream down my face as I read. In the background I hear my 3 1/2 year old slapping his face and screaming. I hear the 5, 7, and 9 year olds eating lunch and tuning out the screams. I ready myself to go in to try and comfort him, knowing that there is nothing I can do...or he can do to stop it at this point.

Thank you for making my isolation seem less today.

[Jia@ColorMeUntypical]

Thank you for writing this. I've learned a great deal and I think I have some repenting to do regarding the things I think about when I see children acting out in public. I've been one of those people who's wondered why the Mother can't do something, never thinking to myself that the child might be autistic, and it's neither of their faults.

Thank you.

[karla]

Arianne - reading your posts always bless my heart. You are such a beauty - inside and out and so many people will be touched and enlightened by your willingness to share your story.

xo ~K

[Becky]

I identified with so much you said, but my favorite line was, "Thankful for the faith that God has in us alone to parent them, to love them, and to shepherd them into the lives they were made for." I am going to save that, print it for the inside of my Bible, to help my own heart remember.
THANK YOU!

[The Bargain Shopper Lady]

Arianne,
I can only imagine what you are going through. I have a friend with a son who is autistic and the longest span he has ever slept is 2 hours. Due to this, my friend has not slept through the night in 4 years either. This was enough to help me understand only a little piece of what she went through.
She found a manual therapist, who does cranial massage and he has done miracles with her son. He happens to be a Christian therapist and he works in Connecticut. Now that we have moved near him, we love to open up our home to families who may need his services. If you or someone you know would be interested in his information, you are welcome to contact me. (You can also search for a manual therapist in your area.)
The therapist recently had a child with down syndrome who was 15 years old and had never slept through the night. After working on him, the boy slept through the night for the very first time.
I'll be praying for you and those precious boys!
Love,
Lori
The Bargain Shopper Lady

[Pam]

Thanks for sharing your story. And thanks Shannon for thinking of this idea!

[Brandi]

Hello,
Thanks for sharing your story. I have a good friend who has a 4 yr. old boy who may be slightly autistic and she goes to great lengths to keep him on a strict gluten/wheat free diet. She even had him recently tested to see if he really was allergic to these foods and the test proved VERY positive. Her website is www.slightlyobsessed.wordpress.com, and she writes alot about how this diet has helped her son.

[Brenda]

Arianne, great post. I could feel your angst through the written word. I worked with autistic children on and off for a year and it was a wonderful growing experience for me. I really cared for the children and their parents. God Bless you as you raise the children he has given you.

[Brenda]

Arianne, great post. I could feel your angst through the written word. I worked with autistic children on and off for a year and it was a wonderful growing experience for me. I really cared for the children and their parents. God Bless you as you raise the children he has given you.

[Kat]

Arianne, your post was great! As a ped. OT I work with a lot of children with Autism. Each one is different and unique and I love them all! I commend you for you honest and loving approach in sharing them with 'us'. You rock!

[Chelsey]

Arianne, your words blessed me so much. I'm only 22, but I spent two years doing behavioral therapy with children with autism. I saw the struggles their mom faced having other children who were perfectly normal. I can't imagine having three, but I also know that God is using you in a mighty way. He's given you a care and love for your special boys, and I hope you're able to trust that you are equipped by the Lord Himself to care for them. God bless!

[Susanne]

Thank you Arianne, for sharing your story. I used to work with children with autism within the schools and enjoyed them immensely. Teaching our children is key. May you and your family be blessed in your journey, may God give you all the strength that you need, and joy to fill your hearts.

[Rocks In My Dryer]

Please note that anonymous comments, or those with fake e-mail addresses, will be deleted.

[Jessica]

Arianne,
I don't know what it is like to live 24/7 with a child with autism, but I do know what it is like to work with adults with autism, as that is my job. I know there are struggles every day and it is always so difficult to figure out their actions and what or if it means something. You and your husband are amazing people. I pray for your strength and wisdom as you raise your sons.

[Jill S]

What a wonderful post. Thank you for your honesty and great post. You open many eyes with your words. My nephew has sensory issues and I see my brother and SIL deal, to a small degree, what you talk about. Like the post above, I pray I would raise my kids to be the ones to play and accept your kids. Remember Jer. 29:11 God is SO good.
Thanks Shannon for being wise enough to do a special series like this. Can't wait until next Thursday!

[Sue T]

Thank you so much for this beautiful post. Just this morning I had a little cry, asking God why no one understands what its like for me and my son. In our family of 5, it all revolves around him. I've had friends and even relatives tell me he's not THAT bad, dont be so uptight, whats the worst that could happen if his routine gets messed up just this once... So thank you for showing me that someone does understand, and from the above comments I see that people do care. This was just what I needed to read today, God bless you.

[Janice]

Thanks for sharing. I was a teacher for children with autism for many years and saw how hard many families stuggle. My hats off to you Adrienne! I'm sending prayers your way - prayers to make it through the tough days and prayers that the good days bring a realization that you have the opportunity to serve God and to see a perspective on life that most of us never see. Check your mirror for your patron saint. Janice

[Maria]

Thank you so much Shannon for doing this series and thank you Arianne for showing us your heart.

I, as an educator, know some about autism, but my training isn't in special education so what knowledge I do have is severely limited. And you have given me some wonderful insight to your world.

I will be sending some of my friends your way.!

[amanda]

This was absolutely beautiful. Wow. Thanks for writing.

[Becky @ 4 Days in a Week]

Thank you so much for sharing. I have 2 friends who have autistic sons. It has many challenges and many joys. I'm priviledged to watch their journeys. Thanks for sharing yours! Blessings!

[Jackie]

I too have a son on the spectrum. He is 14 now and going to a regular high school next year. We started early when he was 3 with speech therapy on to Occupation Therapy. Yes the diet is a challenge. Thanks for sponsoring this. Great Share. We are not alone. Thou when my son was young I felt isolated. The internet is a beautiful tool.

[To Think Is To Create]

For you all to thank ME, when you are the ones who are helping, not only me but each other too, is inspiring to me.

To read about other parents of autism being helped by this post, to see them sharing their own struggles...just wow. And I appreciate Marian especially for addressing even more "what I wish you knew" that I didn't have the space to share in the post, each of her words ring so true.

I wish I could reply to all of you, but I do want to reply to a few of you:

To Prairie Rose--What I would like for the specialists to understand is that even if they don't see a behavior in their one hour with my child each day, that doesn't mean it's not happening. Many times I hear "oh well I haven't seen that" and get so frustrated. The other thing I would like to tell them is that I am way more grateful to them than I will ever be able to express.

To Shana--The "rules" that you are speaking about are social rules and nothing more. My kids are not simply excused from social rules, they are unable to even understand those rules exist. If I could just "educate" them on how to "adjust" I wouldn't even be writing about any of this. Oh how I wish!

To Becky--I've never had anyone say they'd print something out and put it in their bible, how incredibly sweet. Thank you!

To Brandi--My kids have been on the gluten free (among other things) diet since Feb and it has worked WONDERS.

To Sue T--Hang in there, I totally know what you mean.

`Arianne

[mama2tlc]

Wow Shannon- this is a great idea! Arianne- Thank you for sharing your story. I remember that my brother befriended a boy with mental disabilites when we were children- all of his own accord. The mother would yearly take us to a theme park to celebrate the friendship with her son... There is hope!

Also- have you heard Jenny McArthy speak about autism. She claims to have brought her son back from autism, and more and more moms are reporting the same. You can see her testimony on youtube.

God Bless you!

[Jackie @ Our Moments Our Memories]

Shannon, thank you so much for implementing this wonderful idea.

Arianne...thank you for your candor. What a beautiful mother you are; you are blessed to have your children and they are so blessed to have you.

[To Think Is To Create]

To mama2tlc--Yes, I have heard Jenny speak (I've met her, actually, and she's passionate about helping autistic families and a very normal and down to Earth person, despite the public persona) and we are currently doing the same protocol (it's called bio-med, or the D.A.N. protocol), along with traditional therapies, and have seen results that are nothing short of a miracle. It has injected new hope into our hearts, for sure!

`Arianne

[Erin @ Chadsgirls]

Thank you!

[Rita]

Arianne, you have no choice but to enter each day with strength and courage. You are brave to encounter each day whatever comes your way and do what you can and enjoy the unique way each child responds and guide them in the way they should go. You have a grip on what you are doing to raise your boys and love them. You help them and they help us all understand that being different can be a good. Teaching us patience, understanding, & love for one another.

[Alicia @ Experiencing Each Moment]

You've brought tears to my eyes. Arianne, thank you for being so vulnerable. You have taught me much in such few words. I pray that you feel the presence of our Lord in each moment of your days.

Shannon, thank you for seeing our need to think more about what those around us have to deal with. I feel changed.

[Mama C]

Thank you for sharing this. I have friends who talk about their autistic children and I really had no idea what they were even going thru. I hope now I can be a better listener and support. I agree with the comment above, I want my kids to be those kind of friends, too.

[Gego]

Thanks, Shannon for deciding to do this. I am looking forward to the next guest!
Arianne,
I was an Elementary Counselor for twenty years. I want to briefly tell you about my precious "Ethan". When he came to us he was an out of control Kindergartener. He was blessed with an incredible Special Education teacher. I was his designated diversion person. We would go to my office, play, interact, work on eye contact. By the end of the year I could even get an occasional high five.
One day, I decided to dance(POLKA) with him in the hall outside my office (a scary place for him). I didn't have a reason or any particular objective. He was having a restless day and my office seemed to him like "punishment" and I did not want that. The dance lesson ended with a hug initiated by Ethan.
From that day forward, when he was able to come into the school building, he would ask for me, give me a hug, and we would walk hand in hand to his classroom, His precious mother cried the first time she saw this happen.
Ethan and his family moved to a different city at the end of his third grade year. He was able to attend a regular class part-time with his aide by then. I hope he remembers the hugs I gave back.
Ethan blessed me more than any other student I had in thirty years of education.
Arianne, there is always a glimmer of a silver lining in a storm cloud. God Bless you, your husband, and those three precious boys. I will pray that each of them will be an Ethan to someone else.

[VA]

Thank you for putting many of the things I wish my friends could know about having a child with autism.

Sometimes the clearest adjective i use to describe my 13 yr old with autism is 'unpredictable.' I must trust God each day, one day at a time.

Also, I appreciate your emphasis that it is not the child's fault or intention to misbehave. This fact is hard for his little brother to understand!

May God continue to give you His strength and courage in this journey.

Peace, VA

[Laura]

Thanks for that. Our best friends' son has been diagnosed pretty severely autistic, and we have seen his parents struggle so much with all of the issues you mentioned. It has been hard for my husband and I because we don't know what to say or how to help (do you say, I'm so sorry, to acknowledge their grieving, or do you just try to concentrate on the positive moments?) There's also a feeling of guilt when our kids are growing up "normally" around him and we see the differences all too plainly. We don't want to make them feel worse by showing off our kids.

We both read your post and it has helped us better understand what they can't tell us about their experiences and why they suddenly seem so preoccupied. Thanks again.

[D'Anna]

Dear Arienne,
Thank you so much for letting us in a little into your world. I am praying right now for you, your husband, and your children! May God richly bless you all with Love, Peace, Joy, Patience, and lots and lots of Help(ers)!
Thank you!

[Crystal]

Thank you for sharing your thoughts and insights with us. As a teacher I've worked with some autistic children and families and I know that acceptance and understanding by others is so, so important. I have the utmost admiration for each parent who lives this every single day.

Shannon - you have the most brilliant ideas! Thank you for hosting this!

[Janelle]

Arianne, I have to sons with autism and you nailed many of my feelings on the head! Way to go! Feel free to check out my blog - I blog on autism occasionally.

[Bethany Zabrosky]

I have no words...thank you for sharing. You and your husband have beautiful hearts for this grand task God has selected for you.

[Janice (5 Minutes for Mom)]

CHILLS - I am covered in goosebumps and shivering. What a beautiful post. Thank you for expressing so wonderfully what you are going through and the love you have for your beautiful children so that we can understand better what your life is like.

We have autism in our extended family. It is heartbreaking to see this precious little child whom we love regress into this other world we can't understand. Until this happened to our family, it was just something that happened to others, to families we read about. Now it is ours. It is our battle to fight. And our child to love.

But as this little precious child I am telling you about is only in my extended family, I don't see him day to day. I don't know the daily heartbreaks and stress. I don't know what it is like to have it be my own child.

So thank you for helping me understand what you and other parents are going through. We need to hear your story.

[Amanda]

What an amazing post! So real, so informative. Thanks for taking the time to educate us.

[Lisa @ Stop and Smell the Chocolates]

Thank you so much for sharing this. What a great article! I have a couple of friends with autistic children and understand a little of the frustration and difficulty.

I pray that things get easier for you as the children get older and more people become aware and understand.

[kristen]

What a beautiful post! My DS has Asperger's so I see what some of your trials are. Thank you for sharing this with us!

[Renee @ It Happens to Be]

Your strength is amazing! I work in Exceptional Children and never knew all of the possibilities that families could be faced with. You are a true inspiration to anyone who has children. I'm grateful that the Lord created people just like you and your husband to entrust those three perfectly special boys with. I will lift your family up in prayer for strength, happiness and understanding from all those you meet. Thank you for sharing Autistic life from your point of view.
~ Renee

[Dee]

Arianne,

Thank you for sharing.

Shannon,

Thank you for hosting this.

Arianne & Shannon,

Hopefully this will help change attitudes about those with disabilities. I have written some about my experiences with learning disabilities and ADHD. I have one of those hidden disabilities and it is hard when someone judges me because they can't understand why I just can't make my hands work correctly or my writing is messier than a young child's.

[Julie]

I cannot even begin to imagine how hard your life must get! I have four boys and there are days when I just wish they would all quiet down. I just read your "story" and it made me realize that I should be thankful for who they are and a lot of noise really isn't that bad.
Thank you for sharing your story with everyone.

[Cathy]

Adrianne, thank you for sharing this. I really didn't know all this before. I know that my daughter's grade 2 teacher is very good with all the children. 'Cause my daughter is one of the ones that thinks everybody should follow the rules all the time, and is just flabergasted when anyone gets in trouble. And since grade 2, now, when "joey" comes up in conversation, it is usually accompanied by, "Teacher said that he just doesn't know how to.... yet." or "We can just ignore him, because it is okay that he does...."

Now, having read your post I have more appreciation for that teacher, and also I think I can better reinforce those ideas at home too.

thank you so much for putting yourself out there!

[Guinevere Meadow]

Thanks for sharing this. I have a friend with a 12-year old autistic son. He is an amazingly talented saxophone player and musician, and I've often wondered how his autism affects him and his family.

[Aimee]

What a great series! Thanks Shannon!

Arianne, as I read this I can not help but have tears in my eyes as well.

I am the mom of a daughter with sensory integration issues along with "lazy eye" and impaired vision in one eye and a profound speech disorder. Her twin brother has transiet tics. Even though our issues are not the same your words are so similar to how I feel! It is so hard to know that others look at my seeminly "normal" children and judge. My daughter told me recently that other kids don't understand her so they won't be her friend-it just breaks your heart as a parent!!

Anyway, thank you!

[Marla Taviano]

Thanks so much for sharing your heart, Arianne! I'd love to meet your little guys!

[darcee]

This is something I have been http://simplycatholic.wordpress.com/autism/>writing about a lot lately. Our journey with autism has had its ups and downs. It has never been easy, but it has always been worthwhile. One of the hardest things for us was coming to a place in our hearts where we could accept that we couldn't do this alone. As our autistic daughter entered the teen years her behaviors became something beyond what we could handle, but this is hard to admit and I have seen very little written about it. We felt very alone and isolated as we started to look into placing our daughter in residential care.

The lines "Many times families with autism wouldn't mind sharing their suffering with someone. Not just to have a pity party, but to talk about the realities of "what it's like". " ring even more true of those of us who's children are on the sever end of the spectrum. We often feel as though we have failed in some way even if we have done everything we could. I have written about this http://simplycatholic.wordpress.com/2008/06/06/a-note-from-the-edge-of-the-world/>here in the hope that by sharing our story someone else out there won't feel so alone.

[Kirsten]

You took the words right out of my heart. I wish for all the things you wrote....all the awareness and I believe one day, we will see it.

[April]

Thanks for sharing this. I loved reading your post!

[Rock and Roll Mama]

Arianne, this was a beautiful post. I did tear up, as I know that feeling of wanting your children to be free and safe to navigate the world, and knowing also that it will be different for them then it is for others. Your love for your boys shines through so clearly. Thank you for sharing your insight.

Shannon, great series idea.