we both know i’m lying

Survivor, survivor’s, or survivors guilt or syndrome is a mental condition … It may be found among survivors of combat, natural disasters, epidemics, among the friends and family of those who have committed suicide, and in non-mortal situations such as among those whose colleagues are laid off.

The experience and manifestation of survivor’s guilt will depend on an individual’s psychological profile. When the Diagnostic and Statistical Manual of Mental Disorders IV (DSM-IV) was published, survivor guilt was removed as a recognized specific diagnosis, and redefined as a significant symptom of post traumatic stress disorder (PTSD).

~ Excerpted from the definition of Survivor’s Guilt, Wikipedia

*

“I just have to respond to this ONE e-mail,” I say, “and then I’m done for now; I swear.”

Luau rolls his eyes.

I want to tell him I mean it, but ultimately we both know I’m lying.

Because the e-mails will keep coming. And with them the questions, the pleas, the requests to speak, to meet, to talk, to find, to ask, to connect. The ones from people who simply need to hear that someone somewhere understands. The ones that say I’m sorry, but I don’t know where else to turn.

I will respond to every one of them in some way – whatever way I can.

I will give them each something. Information, connection, direction. At the very least, an ear.

I have to.

.

I have to because I wake up every morning aware that my daughter was grazed by the same bullet that hit so many others square between the eyes.

Because my daughter has words. For the love of God, my daughter has words.

Because so many – so, so many – don’t.

Because Brooke is small for her age. Because people guess she’s five or six rather than the reality of her nearly eight and a half years. And because that buys her – and us – a wide cushion in strangers’ expectations.

Because so many don’t have that odd luxury.

Because she is not prone to wandering. And because when she does go too far, she can (now) answer to her name – or at the very least say, Here I am, when we yell, “Brooke, say, Here I am.”

Because so many can not.

Because we are not in the military. Because we don’t live with the fear that comes with a parent – a partner – at war. Because one of us isn’t at home trying to hold a family together – fighting a completely different kind of war every day. Because we don’t have to move every two years, starting over – always starting over – because the military says we must. Because our insurance covers at least some of what Brooke needs and we have access to the people who can provide it.

Because so many who serve our country do not have and cannot get what they need for their children.

Because we live in a time and a place where no physician would have the audacity to imply that I caused my daughter’s autism. That I – her mother – must have been cold, detached, that somehow I must not have loved her enough.

Because mothers who came before us were told it was all their fault.

Because we live at a time when no one would have dared to tell me to send my child away when her challenges began to emerge – to forget her, to erase her from our lives – because she was different.

Because so many before us believed they had no choice.

Because we live in a place where schools have Trees of Kindness, where parents before us have found one another, joined together and created advocacy groups, thereby leaving those of us who came next a clearer path to follow. Where there are inclusion specialists on staff, where social pragmatic groups are facilitated by specially trained SLPs, where BCBAs come to observe and consult with paras who get it – who really get it, where there are classroom teachers and PE teachers and custodians, art teachers and receptionists who truly care about my daughter.

Because schools like ours, while far from perfect, are a dream for far too many.

Because English is our first language, we know our legal rights and we can navigate the system.

Because sadly, even in schools like ours, those things make a difference.

Because although it’s not easy, we can afford the extras – the uncovered speech therapy sessions, the special needs drama classes, the gold-plated neuropsych, the play therapy, the one to one ABA parent training – etc, etc, etc …

Because so many simply can’t.

Because for the most part, the people in our lives either get it or want to. Because my parents read my blog and leave loving, supportive comments nearly every day.

Because so many are hung out to dry by families who refuse to try.

Because I have a group of Mama sister friends who walk this path along with me, who are always, ALWAYS there – to celebrate, to commiserate, to gently bitch-slap, to validate, to love, to simply say, ‘me too.’

Because so many feel like they walk this road alone.

Because I have a husband who stays strong when I fall apart. Who does the heavy lifting while I run around and tilt at windmills. Who makes dinner and does the dishes afterward. Who may roll his eyes, but who never says, ‘Don’t.’

Because so many parents are doing this – or feel like they’re doing this – without a partner.

Because I have YOU. You who take the time to read what I write here, who hold my babies in your hearts and remind me, day in and day out that we are in this together.

Because that is so incredibly precious.

Because when I really look at my life – and Brooke’s life and Katie’s life and our family’s life – what I see is an embarrassment of riches. And I wake up every morning feeling like I need to DO something to earn them.

.

So I tell Luau that I just have to respond to this ONE last e-mail and then I’ll be done.

And we both know I’m lying.

.

Ed note: Please click on the links (in blue) to read more about each topic.

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53 thoughts on “we both know i’m lying

  1. Jess…I think you have definitely earned all the support you have. If you only knew how much your writing helps so many. Your love, patience, and empathy guides me in my days. You have a way of reaching out, empathizing, of relating that makes all your readers feel included and understood. When you are out there fighting for your child I know you are also fighting for my child.

    I thank you and only wish that you may know more blessings.

  2. And we are so thankful to have you….as a voice, a shoulder, an understanding friend. Thank you for taking the time to understand, to listen, to be there when it seems everyone skipped town. Your daughters are amazing and your husband very generous. Thank you for sharing what so many of us feel each and every day.

  3. I too, have found counting ones blessings is the only way- single parent with 2 out of 4 with autism, I have a great job-rewarding work…my children teach me so much everyday- and I’m grateful for the lessons-they are blessings….pediatrician said-”you must be hanging on by your fingernails” – but it’s just not true- all life has difficulty this is my journey -embrace your challenges they “grow” you…. love & peace Laurette

  4. What a beautiful post. One to bookmark and go back to on ‘those’ days. You said it so well. And, yes, Teresa and Jasmin said it so well. We are blessed to have you, too. You are an incredible voice and spirit for all of us.

  5. You’re doing wonderful things, Jess! Little by little, you’re helping to change the world of Autism. I remain in awe of you, my daughter!

    Love you,
    Mom

    P.S. Sometimes, you just have to put the computer away and enjoy some rest and take care of yourself. Just saying!

  6. Jess, as one of the moms who has been hanging by a thread, whose child was hit hard with the autism (and other disability) bullet, I so often feel incredible guilt for not stepping up to do as much as so many other people seem able to do. I hope that, one day, I can pay it forward half as well as I have received…from you, from so many others. (And I know I do in my own small ways here and there.)

    I implore you, though, in those times when it feels overwhelming, too much or too raw, find the strength to walk away for just a little while and refill your own well. (Maybe set aside a particular time frame in which to address the emails, etc, rather than let them nibble away at the edges?)

    And, in case you ever wonder if your words, your hard work, your heart and spirit really make a difference? They do, my friend. They do.

  7. Very well said, indeed. I know what it means to ask for another minute to tend to yet one more email…and that one minute turns into hours. That happens almost every day at my house, so I’m right there with you. How lucky you are (and me, too) to have a family who is willing and able to support you in doing what you need to for your community. Thank you for this post. It was beautiful.

    -Angela (aka Caffeinated Autism Mom)
    http://caffeinatedautismmom.blogspot.com

  8. I thank God that you responded to me when I so desperately needed it. You saved my sanity and ultimately my life. I’m forever grateful for all that you do. I love you. XO

  9. And that’s why we love you. Every one of us who have had the chance to make a connection with you cherish it. Save the email communication in it’s own folder to go back and reference when we (I) need to. You make a difference. You offer support. You let US know we are not alone. SO many times I want to write you about a break through, or a bad day..but I don’t..because I know there’s so so many others out there, who have emails sitting in your inbox, and are hoping for a response…and maybe they need your voice right now more than I do.
    We appreciate everything you do. There is LOVE there, and a lot of it…even though we’ve never met. Thank you Jess, for being so humble, for your advocacy and awareness, for sharing your life with us.

  10. Thank you for always being there, and for being so thoughtful with every word you choose. And please thank Luau for sharing you. You have a gift of reaching out to people and making them feel understood and supported, and we are so thankful that you continue to do so.

  11. Yep, that’s why I have my “Yes! You can ask me about autism!” bumper sticker= because even in this day and age, families are feeling overwhelmed and isolated. Sending those hard-earned hugs to you!

  12. Thank you Jess for your blog, your understanding, and for taking the time to answer “one more” email. Thank you Luau for all your support to Jess and your kids – not everyone is lucky enough to have a partner like you.

    I definitely agree with your “thank god for words”. I know some don’t agree but I always consider my son’s Asperger’s to be a mild form of autism BECAUSE he has words. Yes there are days when he struggles just as much or more than others but at least he has the words to try to explain what’s going on. I do not pity those without words or their families – I am in AWE of them. I don’t know that I could make it through a day let alone a childhood or lifetime with words.

    Thanks Jess for sharing your life and knowledge with us.

  13. Thank you. And thank you for reminding me to keep my perspective. My son has a milder form of autism, but still sometimes as we all do I sink into discouragement and self-pity. Thanks for helping me to keep my eyes on all he DOES have.

  14. And it is that “lie” that makes you the leader you are, it is your “embarrassment of riches” that lead you to be so vocal about our children’s rights and our rights as parents, and most of all it is Luau “rolling his eyes” as he does the dishes, letting you know you can continue to fight the good fight for those of us who can’t. This is who you are and I for one am thankful to have stumbled upon this blog and gotten to “know” you. I have a voice, I have direction, and I have hope within these pages of parents who get it and/or are trying to. I have learned more from you than I ever expected and I am sincerely grateful.
    To find myself widowed and caring for 2 boys was hard enough, but to get an autism diagnosis within weeks was devestating. I have stumbled for the past 6yrs trying to find my footing in this world and through this blog I have found a “family” that does not judge, blame or ignore what is going on with our kids. I will admit that we have far more trials than triumphs, but I have learned from you that is the norm and so I keep fighting. You have also gently reminded me not to lose my oldest son in this battle; the 12yr old who is loving, caring, and also bears the weight of his brother’s autism. Your stories of Katie help me remember that I have a regular kid who just needs to be a kid once in awhile. So thank you for the occassional “lie” to Luau and thank you Luau for letting Jess be who she is, a hero to so many of us.

  15. Your blog (and your wonderful readers) has been my sanity for a short while now. I wish I had found it 2 years ago! Aaaaaaand, having said that, here’s another question to add to your pile. :)

    I couldn’t for the life of me find your email address, so I thought perhaps I’d ask you and your readers here. My daughter is 3.5 years old and has been diagnosed with PDD-NOS (verbal and high functioning). She is an amazing girl and is doing quite well, but she can also be a ticking time bomb when it comes to her quirks and needs. She gets agitated easily and when I’m not helping her work through things like waiting, tripping, dropping something or hearing “no” to a request she melts down quickly. Here is the question…

    ***HOW did you get to a place where you felt comfortable leaving Brooke with a babysitter/respite worker in order to get out of the house with your husband?

    We haven’t been out together in 2 years (and we really need it). I’m concerned that she’ll just cry and scream the whole time we’re gone because “that person” won’t know how to help her through all of her quirks. I’m also worried that they won’t watch her closely enough as she has little regard for her personal safety, but that’s a whole other issue.

    Jess, moms/dads….any suggestions would be great!

    • Kristine – I’d suggest paying the babysitter for a session & having her shadow you, ask you questions, have her see what your daughter is about. If you think she’d have a good repoire with your daughter, have her come again, leave, and go for a walk around the block, cell phone in hand. Incrementally grow it from there. And don’t forget motivators…I always have the babysitter let her know that she’ll be providing my kid’s favorite food or doing something that my kid would like to do. Baby steps. :) HTH!

      • redheadmomma took the words right out of my mouth – er, off my keyboard. ;)

        you might want to look for ed students at a local college or paras / behavioral assistants at a local elementary school.

        we’ve been very lucky in that our sitter has been with us for a long time and knows both girls as well as anyone now. but it’s a process. just like everything else in autismland :)

        good luck!

    • I agree with the Kristine and Redheadmomma. My daughter is now 13 and I so remember those years. Contact your local church or even your county board of developmental disabilities. You may even check with a local school to see if a para professional who works with children on the spectrum might be willing to do babysitting. Contact your local college and look for professors of education or psych (a school with a BCAB program is the best. Professors are willing to post for jobs. I recently contacted my nephew who is at a local college. He found a girl in his sister sorority who is a junior in special ed with a desire to work with children on the spectrum. There are people out there who can help! Just make sure you prepare them. Make a “Guide” with tips and hints about your daughter. Be truthful and upfront. I promise you will get a night out and I wish I lived nearby!

  16. And this is why I keep coming back here…to your blog, to read, to soak, to laugh, to cry….because you GET IT! You often write what’s on my mind before I can even get a full sentence typed on my own blog, because when I come here, I know I am not alone….even when I am falling apart because a family member who doesn’t “get it” says something heartbreakingly hurtful, or I hear the words ” My unit has me slotted to go away for training” or “My unit is on the deployment roster” come out of my husband’s mouth. You “get it” when I am literally dancing a jig in my living room because my son said “I want a Birthday Party” for the first time EVER at 11 years old, or when he yelled for all the world to hear ” That’s my BEST Friend!” at the ballfield because at 11 years old, he had made a social connection for the first time EVER.

    I love your blog Jess, and I thank you for everything, for the inspiration that has helped me start my own blog to help show others “You are not alone” , for the laughter, the tears, the crying out, the voice that says ” Listen to me…to US!”.

  17. Luau – thanks for letting her be there for us. It must be overwhelming sometimes to have Jess share so much of herself with us. We are eternally grateful. Thank you…..thank you and more thank you.

    Jess – I don’t have time for therapy appointments for myself. Your writing IS my therapy. You have shown me that I am not alone and that has made all the difference. Thank you. I send love and prayers to you and your family every day. You have even inspired me to start writing a personal blog which is not anything I thought I could even do – but it soothes my spirit and I hope helps my family and friends “get” me and my kids a little better. So I thank you for inspiring me and sharing so much of yourself. You do deserve all the blessings in your life even without all that you do for this community – you are worthy – you are special and you are loved.

  18. Jess, your writing DAILY helps so many people. I hate to say this but you need to spend time with YOUR family and stop answering every email. That must be such a daunting task and never ending. Autism is, unfortunately, so prevelent people can find support via support groups and parents right in their community, very close to where they are, as well as in unlimited blogs and on line resources. The words you write are so helpful. You have NOTHING to feel guilty about. We are blessed with some of the same things as you and your family. Autism is very very difficult. It is not the end of the world, and I think if we treat it as though it is, the rest of the world will not see our kids and their assets as we do.

  19. I have, at times, had nothing to say because our Bells’ place on the spectrum doesn’t include some of the issues Brooke’s does. Now I see that you are in the same place as I.

    Have you ever read the story of Moses and his father-in-law, Jethro in Exodus 18? Moses tried to do it all and Jethro advised him to get trusted people to help him with the peoples’ issues.

    Just saying…

    Hope your week is wonderful and calm! gail

  20. The giftst that you give with each e-mail each mail you send, each post you write. A gift to the community that can never be measured. So thank you for being there for this community for all communities.

  21. Thank you to Jess, for your time, your stories, and a way with words that feels so effortless. And also to those who comment here. The internet was a daunting place to turn, post-diagnosis, but I needed to find someplace to go, to be, to find community, a base to evolve from. I love the blog stories, and just as much, the comments from others. The respect and helpfulness of everyone on here is something I cherish.

    I would like to throw out the idea of starting a new page, either on this blog or maybe as a new facebook page, something to the tune of “DOAM-It worked for me”. Where any of us could post a question (or a vent), and anyone else could respond to it. It could help lighten the load of some, and give everyone the chance to give back, in their own context, in a comfortable, respectful setting.

  22. “I have to because I wake up every morning aware that my daughter was grazed by the same bullet that hit so many others square between the eyes.”

    and I’ll tell you again. We don’t want any company down here in the deep end. Its crowded enough. Her challenges and triumphs are unique to her and your family. It makes them no less painful or triumphant.

    You are an amazing wonderful person. You’ve done so much for so many but remember to take care of you.

    Love you!!!

    Jersey

  23. The shock waves you are creating by inspiring us moms to be there for others and so on is making a hugh difference for our kiddos and families. :)
    And the ways you put words to, and help me to articulate and make sense of the emotions I have is daily therapy for me!

  24. because you are amazing… because you are selfless… because you “see people.” because you understand… that information is wealth and knowledge is power. that experience is connection. that life is good. that people matter. that rome was not built in a day. that it doesn’t matter if you are heading to holland or hawaii… because we are more alike than we are different. because what we really need is each other. and above and beyond, because you have hope… and faith… in progress…. in answers. in victory. because it’s the survivors who will lead those in combat out of the woods. keep writing jess… xo

  25. Thank you and your wonderful readers for sharing a small piece of that with me this weekend. With the help of your readers and friends my friend carleigh, who has never met my son, but is a huge encouragement and support to me from across the country, was able to exceed her goal of $300 and ended up with $360. When we asked she was at $135 I believe. It warmed my heart to see all the support…for ALL our kids. And for once, I felt a little less alone in this journey. Thank you!

  26. In case I forget to tell you in November, this year I am most thankful (after my husband and children) for you and this blog. I’m so happy I found it!

  27. Donna ~ Beautiful xxx

    Margaret ~ wow, that is beautiful x

    Denise ~ thank you ! You are my fav. blog right now b/c you get it

    Becky ~ WOW! You are such an inspiration!

    Pam ~ And that’s exactly why we love you, your family and your blog…you GET it and you always have the right words.

    Sheila ~ Seriously DOAM, when DON’T you know what to write…..or say?

    Vic ~ thank you Jess. You make me feel accepted, hugged and give me hope.

    Daisy ~ Beautiful words, I read ur blog everymorning. It always helps to see Im not alone. My son is one of the many without words….

    Becky ~ Such a beautiful and giving spirit you have… I am so grateful to have found your blog. Just knowing that I have a place I can go and be embraced and surrounded by people who know our struggles, feel our pain and rejoice in every little success is immeasurable. Even the best of friends and extended family weary of it from time to time … you fill that void for a lot of us and we are touched by your generosity. And Luau’s too. :)

    Lesa ~ In 1998, not that long ago, when my son was 6, a pediatrician told me the sooner I accepted that the only choice we had was to institutionalize our son AND move on, the easier it was going to be. I didn’t A.) Cut his calzones off and B.) Listen to him. Proud to say that 19 year old boy will be graduating from HS in 06/12 w/a regular diploma!

    Megan ~ One day soon, I’m going to learn to get a kleenex BEFORE I read your blog! I try to look at life this same way, but there are days it sure isn’t easy.

    Neurotypical Mom ~ Please tell Luau ‘thank-you’ from all of us. And a big thank-you to you as well. Thanks for being there for all of us. It means a lot.

    Neurotypical Mom ~ I think that’s part of the reason that I emailed you on Saturday. Imagine me being able to help the woman who has helped me (and so many others) so much! If I can ever do anything to lighten your load please just ask!

    Jennifer ~ I LOVE YOU!!! And look forward to my morning boost from you everyday :) THANK YOU FOR BEING YOU!!! and letting me know everyday that you know what I am going through!! THANK YOU!!!

    Alyssa ~ Your words touch me (all of us) in a way others might not be able to understand. I am incredibly grateful for the time you take to share

    Alyssa ~ ‎(damn enter button!) with all of us and to remind us that we aren’t alone on this journey! Thank you!!!

    Teresa ~ Thank you !!

    Tracey ~ For years my mother-in-law blamed me for my sons Autism. I was British, therefore I didn’t know how to raise an American baby.( Excuse me, but all babies need the same love and care regardless of Nationality), I had been trained as a Nurse in England, so, yes I knew what to do. It was only after I had given her a LONG list of books to read that she turned around and became more understanding, that it was NOT our fault and that we needed some understanding ourselves. We couldn’t control the outbursts, anger, frustration. We couldn’t make our children look at you in the eye, we couldn’t make them talk on demand.Now, after nearly twenty years, they’ve seen their grandchildren up close and in action. They see the beautiful young men that they are, and the intelligence that shines, eventhough the doctors say the youngest has mild retardation.Now, I’m waiting for services from my State. The youngest of the two were accepted for the MMR, but my oldest has Aspberger’s and that is no longer accepted. So, my husband and I make do. WE help our kids become independant, we teach them the skills that they will need to get through the day and yes, we are so bloody proud of our boys.Survivor’s guilt_ man I have that in droves. I can out fit a platoon with it. My babies are healthy, some what happy and can tell me when they are unhappy. So thank you, Jess and Luau for standing at our backs. Luau, I apologize for taking Jess’s time for just one more message, but, Man, you have a fantastic Lady, with two more in the Wings. Thank you.

    Melissa ~ Yes,the guilt. But also the guilty relief that your daughter is “mildly ” autistic. Yes,she has words,words to say I love you and the hugs,the “full body hugs” she calls them. And alot of parents don’t . My husband and I just say we are so lucky. Then that guilt of those feelings. Yes,I’m just also lucky to find you Jess and all you who love your children so very much. ♥

    Terri ~ This is why you get all those emails. You touch so many lives with your words. We love you Jess.

    Tina ~ The shock waves you are creating by inspiring us moms to be there for others and so on… is making a huge difference for our kiddos and families.
    And the ways you put words to, and help me to articulate and make sense of the emotions I have is, daily therapy for me!

    Veronica ~ You have a gift! Thank you for sharing your story ~ some days it feels as if I’m reading my own. ♥
    about an hour ago · Like

    Diary of a Mom thank you all. i am humbled and so honored by all of these kind words today. much love to all of you.

  28. Jess, thank you. This post could not have come at a more fitting time for me. I was a part of a parent panel tonight at our local Children’s Hospital Autism Center and had the opportunity to share (along with 2 other parents) my family’s story. Our daughter has made tremendous progress the last 4 years since her diagnosis and we heard those amazing words “no longer meets the criteria” at our last re-eval this past spring. I hear and see the struggles that so many families face day in and day out and my heart just hurts. I know this probably doesn’t make any sense but I feel as though I’ve lost my place in this amazing community even though my heart will always be here. The journey we were on, even though it was fairly short lived has forever changed the person that I am. Your writing has helped me so much and I just wanted to tell you thanks. You are truly touching lives. Hugs from one mama to another :)

    • firstly, congratulations. that is absolutely,WONDERFUL news. secondly, please know that there are strict requirements to be a part of this community. to be clear, they are heart, compassion and sensitivity. and that, my friend, is all we require. you will always have a home here.

      • Thank you, Jess. I know in my heart the “requirements” and know that I will ALWAYS meet them. Just when I saw the survivors guilt start to this post…it really hit home. When we got the news from our team at Children’s Hosp. (where she was originally diagnosed) this past spring, it was like a weight being lifted. We are still watching like a hawk and have been gradually reducing our private services over the last 4 mos. I certainly don’t think that this is the end of the road and I know that we will always be diligently working at home to maintain these gains and continue to grow them….Thank you for what you so beautifully share with your readers through this blog :)

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