wakeup call

Ed note: The following post is now two weeks old. Actually three. I think. An awful lot has happened since I wrote it, so I really can’t be sure.

It’s only the first part of the story – the backdrop really. I still haven’t written the second part. The second part is the part that hurts – the part that’s still raw two or three or whatever weeks later. I’ve been avoiding it.

Typically, when posts fall this far behind real time, I walk away from them. That’s why there are nearly a hundred and fifty posts in my Unpublished Drafts box. They were simply too late to see the light of day.

But I couldn’t walk away from this one.

Maybe because it hurt. Maybe because I knew I was avoiding it.

Of all the lessons that I’ve learned around here, two often stand out the most –

It’s the stuff that we avoid because it hurts that is exactly the stuff we need to tackle.

— And —

If we don’t acknowledge our own missteps, we’ll never allow ourselves to learn from them.

So here goes ..

There’s no contact information on this blog.

I don’t give out an e-mail address.

I can’t.

I work full-time.

I mother full-time.

I advocate full-time.

I can’t.

About a month ago, a reader posted a comment asking if I’d gotten the message that she’d sent to me via Diary’s Facebook page.

I thought, Huh? How could I get a message on Diary’s Facebook page? That’s impossible, right?

Um. No.

Turns out that Facebook’s new Timeline format comes with a messaging function for all public pages.

I looked, but found nothing.

I hate to admit it, but I was relieved.

And then I realized that I had to log in as Diary’s administrator (something I do perhaps once a month at most) to see them.

And when I did, I was completely overwhelmed.

By the time I got there, sixty-seven messages sat waiting for me.

Sixty-seven heartfelt notes, requests, pleas, needs, rants, videos to share, stories that I had to hear, situations I had to find a way to help expose, make right, FIX.

Sixty-seven living, breathing, human stories.

I dug in slowly, desperately overwhelmed by the raw emotion smoldering on the screen.

I had to take them in in small groups.

Ten, sometimes five, even two or three at a time.

Manageable bites.

I tried.

I responded to each and every one in the best way that I could.

Thank you for sharing.

I’ll try.

Here’s a website that might help.

Tears streamed down my face.

These people need help.

They need so much more than I have.

“You are not responsible for the world, Jess. You can’t be. It’s too much. Somebody needs to say this to you. You’ve got to rein it in or you are going to break. You can’t do it all for everybody. You just can’t.”

It’s a year ago. My friend Rachel is yelling at me in her kitchen. We’ve both had too much wine. But the fog of intoxication sometimes comes with a clarity that sobriety more effectively avoids.

I don’t say anything.

I know she’s right.

But I don’t know what to say.

Saturday morning –

I’ve been avoiding it, but I know I need to check the messages again. I know they will have piled up since the last time I opened Pandora’s box.

I can’t ignore them.

I don’t know how.

I take a deep breath and start slowly.

I respond one by one.

I’m writing to you with the hope you will help me be my daughter’s voice. Last year my 8-year-old autistic daughter was verbally, physically and I believe sexually abused on her special needs bus.

Oh my God.

Oh my $%&@ing God.

He throws himself at me, claws at me, clings to me, hits, headbutts, and he often goes for my face/head. If I speak, the sound of my voice makes him furious. If I attempt to walk away from him, it makes it worse. When I try to get away the meltdown escalates and he scratches, claws and clings to me.

Oh, friend. I know. I KNOW.

Sometimes I think God picked the wrong person for this. I hate feeling like a failure of a mom.

Oh, honey, we all go there. Every one of us has those moments where we feel desperately ill-equipped to handle the life we’ve been handed. We’re not. God doesn’t screw up. Where do you live? Let’s see if we can make some connections.

.. He’s 14, an aspie, with a lot of anxiety and low self-esteem. His biological father is a monster who puts him down, often stands him up, ignores him when it’s his “weekend” and constantly tells him that his mother is trying to control him and mess with his head by having him believe he is disabled.

The young man is the sweetest soul and it kills me to see him afraid of his own shadow, and walking on egg shells around everyone, constantly apologizing for living.

Add to all this the more than likely fact that he is gay. At his mainstream elementary he was relentlessly bullied – apparently not for his ASD qualities – they’d call him “f_ g”.

I fear he is ripe for suicide as he goes through his mid-teens. I’ve never run across another case of a gay ASD person. Is there any support group in the county? An EFFECTIVE professional with experience with this double issue?

I look at the date of the message.

Two weeks ago.

I can’t breathe.

~ just seeing this .. i’ll ask the question and let you know.

I scramble. I put the question up on Dairy’s Facebook page.

This could be any one of our kids.

Tears sting my eyes.

I send a private message to friends who I think might be able to help.

It goes up on Thinking Person’s Guide to Autism.

Answers begin coming in.

Resources.

People willing, wanting to help.

A gay, autistic man steps forward.

Thank God.

THANK GOD.

I send him a private message.

Thank you! How can this kid get in touch with you?

My baby girl comes bounding into my room and crawls into the bed next to me. Her Pinkalicious pajamas are sideways and her sleepy-headed hair is defying the laws of physics. She plops herself down next to me and grabs Luau’s iPad.

“Excuse me,” I say.

She looks at me as if she’s noticed me for the first time.

“What do I need before you start to play?”

“A hug,” she says as her little arms wrap around my neck.

I close my laptop and scoop her into my arms.

I’m sure that by now her sister’s been up for a while.

“Let’s head downstairs and hang out with Katie, baby, cool?”

“Cool,” she says as she and her crazy sleepy hair pad down the hall.

As I head out the door behind her, I run back and grab my laptop.

You are not responsible for the world, Jess. You can’t be. It’s too much.

This is family time – our time – but I can’t leave this boy behind.

Somebody needs to say this to you. You’ve got to rein it in or you are going to break.

I know.

But I don’t know how.

To be continued ..

30 thoughts on “wakeup call

  1. I’m the first to comment! wooh
    Jess… All I can say is… You DO do too much. And yes these people need help but … it can’t always be you. I would suggest posting most of the messages to the Diary page. There are a million people on there and someone will have the time or inclination to help – but it doesn’t always have to be you. Secure your own oxygen mask before helping others =) Karen on Confessions seems to do that a lot on her page, post questions from readers. It gets great response. What you’re doing is so noble but our first concern is you!

  2. You definitely do too much. Share the messages and questions and let people help. My doctor gave me a very long lecture on Thursday about how I can’t take care of my kids if I don’t make time to take care of myself…. and she’s absolutely right. Sounds like you needed to hear that too.

  3. This is, thankfully, the time that I can say how worried I am about you. You know I tread cautiously, but I’m worried because you don’t take care of yourself. A few months ago, you were totally motivated when your dear friend Jersey said that you Mama’s had to live forever for your kids and that it was time for you to get healthy. Please remember that, Jess! Secure your own oxygen mask before helping others. Please understand, we’re all saying this with love. I’m saying this with so much love, Jess, I feel that I could break. It’s time!

    I love you,
    Mom

    • Well said Jess’s Mom.

      Jess, you can’t do it all. Thank you for being so much to so many. But you can not be all for all. Please know that your fans and friends do not expect it.

      With hugs and fan-follower-love.

  4. Setting boundaries is essential for life. We do it with our children, at work and even with our friends. It is no different on the DOAM blog page(s). Ask your therapist strategies to help with this and come to understand what that is about, it really will free you:) Above all else, remember that by saying no to others, we say yes to ourselves!!
    Go C’s!! Come on, even I need a little help with my cheer boundaries….

  5. Jess,
    Please allow others to help! Many of us moms would be happy to help share our experiences and our knowledge with other parents. Maybe create an “Advisory Board” and then each week a different mom or dad takes on the questions of the week. This way, noone becomes overwhelmed our burdened, but each of us would get a chance to share our experience…funny, I am thinking how I would word my resume for such a job: 11 years of EXTENSIVE experience IEPs, 11 years of EXTENSIVE ETRS, 11 1/2 years of experience scheduling appointments with neurologist, psychologists, OTs, PTs, DOs, behaviorists, etc., Extensive ABA training, Parent Mentor for WoodallKids, PTO President (3 years), etc.
    OK, writing all this makes me want to throw up! YOU DO TOO MUCH JESS! Allow others to help you!
    xoxo! Becky

  6. I agree with every one else Jess. Open diaries fb page wall for comments. Let people reach out to other’s in the community. it doesn’t always have to be YOU. In a public forum like that, other’s can help…it will be easier for them to reach out to each other.
    I guess in many ways it’s like fame. Only in your case instead of an autograph we reach out for your help. Still, you have to know when to stop, and you have to give yourself a break.
    I was going to email you happy mother’s day yesterday, but I didn’t…for exactly this reason. I know you have too much on your plate, and to many people that need/want your help. Maybe besides giving us a forum for each other, you could put up a page of resources…so people can gpo there instead of having to contact you all the time. Hopefully though, just by reading this post peole will realize you need your own oxygen mask. Sending hugs Jess, and hope you had a very Happy Mother’s Day! xoxo

  7. Yes, you do too much because you care so much. I know there are so many families out there that need help and don’t know where to turn, but there are also so many families out there who do know what to do and could help. I just met 2 other moms this week and just by the 3 of us talking, even though we were all “experienced” we still had such different and helpful information to share, it was great. There has to be some way that there can be a way for families in communities to connect and help each other. Please don’t try to take it all on yourself. You have your own beautiful family to worry about. Let other families help.

  8. “In the event of an emergency, you would be instructed to put your own oxygen mask on before helping those around you.” In this case, if we all don our masks, we can take care of each other by crowdsourcing (I think that’s the right word).

  9. This community is amazing to me everyday, starting with you Jess. You have such a caring, loving spirit and so many identify with your stories (including me). I’m so glad you reached out for help from the incredible people you know who could help this young man. On the edge of my sat for part two.

  10. I agree with Becky here. I know that being the type of person you are, you can’t just turn your back on people asking for help, but perhaps you could delegate. Have a different person handle each day of the week, or create a resource board where people could ask for help (anonymously if need be)on various categories of issues, but you don’t do it all.
    You can’t.
    Nobody could.
    We are all so grateful for this community, but it has to be just that- a community that works together, not just a bunch of us demanding help from one person. We all need (and want!) to work together on these things. You need to take care of you, and I think every one of us who has commented here would be willing to help, in whatever way we can. Now, turn off the laptop and go get some chocolate. Really. Hugs.

  11. You are amazing…but I agree that one person can’t do it all….I think that asking for help on Diary’s page is an excellent idea–you can start the motion, and find the connections simply by asking. Look at the responses you’ve gotten so far. I know so many of us would be happy to help you.

    Looking forward to part two…

  12. Wow, this hit me hard. I’m a 42-year-old dad with Asperger’s, and I have two children on the spectrum as well. I am trying to organize people and resources in the Abilene Texas area. If there’s anything I can do, please let me know. I would say more, but I’m still trying to process this. I don’t want to turn this into a rant against people who take advantage of those with autism, especially children. It wouldn’t be good for me and probably wouldn’t help anyone else. But please, let me know if there’s anything I can do to help you, or anyone in my area.

  13. I’m reading everyone’s comments, and I feel like a fraud. I really want to agree with what they are saying – and I sort of do – especially with the part about delegating some of the issues you want to help people with. But the thing is – I GET IT. I GET how you feel the need to help other people. I feel the same way. When my husband randomly mentions during dinner conversation that a friend from high school has a child who was just diagnosed – i stop breathing. I can barely get through dinner because I want to jump up, run to the computer and reach out immediately. I feel like every second that passes is wasted time, time that could mean providing a contact for that person, suggesting a therapy that has worked for us, giving them a link to this blog, or simply telling them that you are there for them in the event that they wake up screaming at 3 a.m. and need someone to rant to – because I would GLADLY take a phone call at that time if it means a few moments of sanity for someone going through what I am going through. I GET it.

  14. I agree with all the comments. I think we’ve all been in your position of wanting to help. It’s hard not to be with the numbers climbing every year. However few people help on the scale that you do unless it is their full-time job. You can’t do it all. It’s a tough lesson to learn and that’s why it needs to be repeated every few months. Take care of yourself. You have brought a community together here and we will be here for Part two – whatever form it takes.

  15. You are the most amazing person I have met since we started our family’s journey years ago – and a life saver (which goes without saying since I’m here!) And the network/resource you have created and keep going is just stunning in simplicity but SO effective. We all want to feel heard, understood if only by one other person, and are you that right person! Now, about the 3 tons of responsibility on your shoulders…what would you say? Take what you can, do what you can.. and then let it rest. How I hope that in the near future how many more resources will allow people so many ways to find the help, the answers that you are amazingly able to provide. We are blessed to have you and we can’t lose you. Do what you can but no more.

    And Happy Mothers Day – i wish you could enjoy that every day 🙂

  16. You are totally amazing and one of kind. You spirit and love is amazing and huge. I wish I was half the advocate and “friend ” to those in the community that you are. This post made me cry, made me realize I am not alone, made me realize even when we don’t hear an answer that someone is out there. You can’t be everything to everybody, and your main focus is your family. But just by writing this blog you give voice and hope to so many of us. In the short time I have been following it I have learned so much and and found my way to so many resources. Do what you can, and try not to obsess on what falls by the wayside. I know that is easier said than done, but the sticky hugs and little steps with Brooke are what matters. Take care of yourself, that is the most you can do. The love of so many is with you. ((hugs))

  17. Jess, your page provides the place for our community to hang out together, but that doesn’t mean that you personally have to provide all of the solutions. I would love to find a mom who has experienced the challenges I have with my 5-year old almost non-verbal son, and I could help a mom with a 3- year old on the way down the same road. Let the Diary page be a place people can go for help, but please don’t try to carry the burden all by yourself!

  18. I have been in awe of your capacity to give ever since I started reading your blog because it takes every ounce of energy I have (and often don’t) to focus on one child, my own. Of course I’ve commiserated and shared with fellow asd warrior moms but nowhere near at your level (hello, White House?!).

    Even if you dialed back what you do significantly, you will still be making a difference. Even if you went completely dark (which I highly doubt), you will still have made a difference. For so many. There is no shame in narrowing your focus and giving yourself a break. None.

  19. I know its been said already, but many of us (myself included) are more than happy to help you sort through mails, give expirences and resources, and whatever else we can do to help you and others. I have never met you personally, but I am thankful for your posts and everything you do for our kids and military families! While you are often our voice, teacher, mentor and resource, you are first and formost your babies mommy…and no matter how much we may need you, its most important that you remember to take time for you and them. If you choose to open the FB page, know that you will be aided by thousands! Members of the community from all over who are happy to help out. HUGS!! You are not alone. We are all here for YOU as well!

  20. I just wish you could understand how much you simply do by having this page, this community center for all of us to come to, to belong to…. You do soooooo much just by how much you share…. No, you are not responsible for the world and No, you can’t fix everything and you should not feel that you should have to. You do ENOUGH just by opening up your heart and your help EVERY SINGLE DAY right here on these very pages….. THANK YOU, THANK YOU, THANK YOU!!!

  21. Jess, I know this isn’t a spiritual blog, but I feel the need to share a lesson recently learned in my life. Some of us, I believe, are spiritually gifted with seeing the needs of others. All of my life, I jokingly said I had a pair of invisible antennae, allowing me to see and FEEL the needs of others. It was only recently that I learned that I don’t have to respond every time. I realized that God did not expect me to be Him or to do his job for Him. Obviously, I am just one person, stretched very thin, and barely able to keep my own family together. I found this plaque and have had it prominently displayed ever since: Instead of carrying the world on YOUR shoulders, talk to the one who carries the universe on His.

  22. Eva ~ I said it last year when you were headed to the White House – these are not all your problems to carry, if you didn’t have a family and a child with autism, and had put yourself out there to help everyone, then sure but you have more than enough of your own – your family has more than enough of your own – it isn’t healthy and somehow there needs to be a space – could you perhaps create a page like the community brag page where people can post their questions rather than placing them on your shoulders? I am sure people would help out like they encourage on the brag page – that way we can all do our bit?
    22 hours ago · Like · 4

    Erica ~ Could you add other admins to your page to assist in the process of networking, getting help, spreading the word etc?
    21 hours ago via mobile · Like · 3

    Crystal ~ I could have wrote that. Here is what wisdom and faith have showed me on this journey…be a messenger, not a mule. Don’t carry the load alone. Use your forum to connect people!
    19 hours ago · Like · 1

    Rachel~ I am the one that sent you the last message…passed on from a mom in my yahoo group who was looking for support for a mom she knew. I don’t know what to say. I know you don’t want me to apologize for sending it and thank God I did because the resources you found for that young man were amazing. And yet I also understand that you must create boundaries for yourself and your family. I don’t have any easy answers for you, Jess. I just send love and tremendous gratitude that you are looking to create balance for yourself as we all need to do.
    18 hours ago · Like

    Margaret ~ God bless you, Jess. Please take care of yourself and protect yourself when you have to. What you do with your blog helps so many people, me included (even if it almost always makes me cry).
    17 hours ago via mobile · Like

    Gail ~ When Moses was overwhelmed with the problems of Israel, his wise father-in-law, Jethro, advised him to appoint wise and discerning people to deal with these issues. You are one person, Jess. If you were to have people to delegate these issues to, it would help you and you would have to “let go” and let them help. I think that many of us worry about you. hugs
    15 hours ago · Like · 2

    Boo’s Mom ~ I love you. And the message I sent you? I was wise enough to realize that I needed to reach out to more than one person, because we ALL have such full plates! And your kind response was so appreciated. And it was another of our comrades who ended up starting the domino that ended up with giving me new connections. Did you see Try Defying Gravity’s piece on social media connections? It’s not all up to you, girl. And always remember that your single most effective tool is in educating and informing others by sharing the story of your autism. You are amazing, just the way you are!
    15 hours ago · Like

    Kim ~ As much as you want to, you can’t do it all by yourself. We’re here to help. What about adding a page to your blog, like the Community Brag Page, where readers can reach out to each other for help / answers? In the mean time ((hugs))!
    13 hours ago · Like

    Kimberly ~ I am sad to say that I think I was that person who asked if you saw my message. But I am very loudly saying, “Pull the reins in, Jess. Of all people I should have known better. I am not half the advocate you are but I want to be. I want to make a different for other kids, not just mine. But my therapist says, take care of your kiddo. The rest will come. Maybe not today. Maybe not tomorrow but when the universe is ready for me to step it up. You are loved Jess. By many. And if you don’t take care of yourself, you won’t be any good to your husband and girls. Or your fight. As soon as I sent send on that message many weeks ago, I thought to myself. Who do you think you are? Everybody wants five minutes with this incredible woman. The world doesn’t revolve around you. Jess has a family. She has a life. Back off and take what she gives. Don’t ask for more.” So I sincerely apologize for having a moment of relapse and thinking you speak to only me every time you make one of your awesome post. But you are so incredible that your post does seem to be written for me. But I need to remind myself there are hundreds of others thinking the same thing. Please, take care of yourself. Be gentle with yourself. You couldn’t be more awesome if you tried, my fellow mom. And lean on us too. A big cyber hug is coming your way. I hope you can feel the tug on the reins…I am pulling your reins back…it’s the least I can do for you. XO
    12 hours ago · Like

    Jessica ~ If all u were to do is post, the difference you make is tremendous in my life. I am a single mom of three boys the oldest on the spectrum the second getting closer and the third too young to know. Just this post alone is huge and has many lessons for all to take from. I have been wanting to do my own page for awhile and this could be just the push I’m looking for in which direction to take it! Very inspiring! Strong people always seem to struggle with how much to take on and when to leave well enough alone. #takingnotesandprayingforusall

  23. Thank you for this post. I’m the mother of a beautiful 15 year old son with autism and a researcher working on trying to reveal the experiences of young adults with high functioning autism and their families within our society. I understand the self imposed pressure to do as much as you can for those with autism and their families. I understand the way that the need to help becomes so much more than a personal experience.I also understand that you still need to be you. So if I can help in any way please feel free to let me know. Like all mum’s of teenagers on the spectrum I have a wealth of information, understanding, experience and compassion. As a researcher I have access to some resources that others may not. I’m here and like so many of the wonderful mum’s who’ve already stated, I’m willing to help. The community board idea sounds fantastic.

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