i’m crying

“The one redeeming feature of this evening is that, for all intents and purposes, it’s over. Autism – one. My family – none. God, this just sucks sometimes.”

~ My Facebook status last night

**

We’ve just finished dinner. Brooke struggled at the restaurant, and though she got it together, she’s been walking the edge of the precipice all night.

She’s asked for a special treat. Rather than choosing a small piece of candy at the shop down the street, she’s asked to go to the ice cream parlor. I don’t have it in me to say no. I just want my girl happy. If a scoop of ice cream can do what I can’t, well then get the kid some ice cream.

Katie opts out, choosing instead to stick to the candy shop. She and Luau will meet us at ice cream.

Along the way, Brooke begins to cry. She can’t tell me why and I can’t find any obvious reason for her tears. I try to distract her, but anything that I say seems to fuel the fire. I’m at a loss.

As soon as we open the door to the ice cream parlor, I feel the noise. Thanks to Brooke, I don’t hear it – I feel it. It’s heavy and thick and permeates the space. I offer her her headphones, but she shakes her head, “No.”

We get in line to order. Within less than a minute, Brooke is no longer crying; she is sobbing. Her frustration is palpable. She looks like a mouse in a maze, lost, angry, impotent. She spins and bumps into the line divider. She looks up at me, pleading. Though she doesn’t speak, her tear-streaked face couldn’t be clearer. “Do Something, Mama,” it shouts. “Please.”

I try everything I’ve got. I crouch down and pull her to me, slowly, gently. As much as I want to spin and cry and scream along with her, I will myself to stay calm. I speak softly, clearly.

This is what we do, isn’t it? As our babies ramp up, we slow down? Fighting every instinct, because this life we lead simply does not allow for a natural response.

I offer to ‘do the Sesame Street voices.’ The very same ones that we did all morning. And all night last night. The ones that drive me insane, day after day after day. “What do you want Prairie Dawn to say, baby?”

She looks at me as though I’ve come at her with a branding iron. “NO!” she yells – pained, frightened – at the prospect of one of her favorite things. Up is down and black is white and nothing makes sense when the demons get too big.

I try to sing softly in her ear. I ask her what Mary Magdalene said when Jesus ate the wood chips. I ask what Mr. Noodle did with the banana. I ask repeatedly if she wants to leave. No, no and no. “I will get ice cream,” she says, the words nearly swallowed whole by a jagged breath. A hot tear lands on my cheek. Then another. I wish to God that I could DO SOMETHING. I offer the headphones again. “No.”

I see another mother on line staring at us. I don’t read into it. I don’t have the time to wonder if she’s judging us or is simply curious. My energy is fixed in one place. And there it will stay.

Brooke is now crying uncontrollably. The sadness is so much bigger than she is. Just a whisper shy of eight, she is still a tiny thing. She could pass for six or even five if pressed. And this …this thing .. is just too big for that tiny little body. It’s too much. It’s just too much.

The only words she has left are, “I’m crying.” They are drenched in tears. They do no more than taunt me with their statement of the obvious. They offer no insight, no explanation, to roadmap to help. Yes, honey, I say, again and again, “I see that you’re crying. I want to help.”

Luau and Katie finally arrive. I ask Brooke if she wants to go outside and Daddy can get the ice cream. We all but run for the sidewalk.

My girl is a mess. There’s no pulling it together now. Try as she might, she cannot stop crying. Katie tries to distract her. She points out Sesame Street characters in the window of the stationery shop next door. Brooke tries, God she tries, but the thing is just too big.

Luau comes out with the ice cream. She holds it, but won’t take a bite. She finally offers something. “I want to go home.” She repeats it again and again. It’s all I can do not to scoop her up in my arms and sprint to the car. Home. That I can do.

Luau and I met at the restaurant earlier, so we have two cars. As we walk, I tell Brooke that I will drive Daddy’s car. She and Katie will come with me and Daddy will meet us at home. She has a different idea. “I will go with Daddy,” she says. “You will take Katie.”

Her shoulders shudder. The tears spill to the ground.

I feel like I’ve been slapped. try not to show the hurt. There’s no space for it.

Her My frustration is palpable. She I looks feel like a mouse in a maze, lost, angry, impotent. She I spins and bumps into the line divider Katie. She I looks up at me God, pleading. Though she doesn’t I don’t speak, her my tear-streaked face couldn’t be clearer. “Do Something, Mama God,” it shouts. “Please.”

Katie reaches for my hand as we walk to my car. She’s having trouble keeping up, but I can’t slow down. We have to get home. My girl may have pushed me away, but when she says, “Mama,” I’ll be there.

Katie is upset. I kept up the facade as long as I could, but the dam broke. Tears stream down my face as we walk. “Mama,” she says, “I’m so sorry.”

I try. I really, really try. I don’t want to talk. I just want to get home. “Oh, baby, there’s nothing to be sorry for or about.” I’m struggling to keep my voice even, calm. She deserves that. No less than her sister needs it.

“Mama,” she says, “I just need you to listen for one second. Can you do that, Mama? Just for a second. We can keep walking.”

“Of course, honey. What?”

“Just four words, Mama, OK? Just four.”

We’re nearing the car now. Almost there.

“It’s not your fault.”

I open the car door and she jumps in.

“Oh, baby girl. I know that. But thank you for saying it. Thank you.”

“Just remember that, Mama,” she says as I climb into the front seat. “Just remember that. Cause even though you know it, I’m not so sure you believe it.”

I’m speechless. This child is ten.

I turn on the car with a sense of urgency. We’ve got to get home.

**

I don’t know where to end this post. I can stop here and leave it at that. With a ten year-old sage who sees straight into her Mama’s soul.

Or I can tell you how, in a fog, I drove the car up and over the curb pulling out of the parking spot. I can tell you about the nauseating sound that the came when the concrete tore the bottom of the car or about me crouching beneath the body pulling mangled pieces of plastic from the frame.

I could tell you about the woman with the wire cutters who made it possible for us to drive home, all the while wondering what in hell that wire was supposed to be connected to. I could tell you about picking up the pieces from the road, gathering them together and laughing through tears at the obvious metaphor for the whole night.

I could tell you about the car ride home when Katie so valiantly tried to keep it light, but I couldn’t do light. How she kept asking if I was all right and for the life of me I just couldn’t figure out what to say.

I could tell you how I snapped at her when we got home – how I was running up the stairs and she said, “Can I just have some Mama time?” and how I said, “Seriously? Right NOW?”

How after she was so damned incredible all night, I walked away, angry at her selfish need in the middle of it all for her Mama. How I stomped up the stairs, leaving her behind in a puddle of tears. How I hated myself in that moment.

I could tell you how I went back down and sat with her after all was said and done. How we cried together and how damned sorry I was. God, how sorry I was.

I could tell you how I found Brooke sobbing in her bed long after bedtime. How I pulled her close and brought her into my room. How she took my hands and pulled them across her chest, pushing them down. Looking desperately for pressure, heaviness, a place where the pain could end.

Or I could tell you how she finally – finally – calmed down again and I brought her back to bed, wondering all night, “Why?”

No matter where it ends, the story is the same. A family spinning its wheels – impotent, tired and overwhelmed.

Autism – one.

My family – none.

Thank God it’s a new day.

**

Ed Note: If you haven’t yet read (or commented on!) my letter to President Obama, I would be grateful if you would take just a brief moment to click over, read and, if you find yourself agreeing with the sentiment, leave a comment expressing your support. We need as many voices as we can get from this community. Thank you! —> Click Here <—

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63 thoughts on “i’m crying

  1. Tears are in my eyes. Sometimes all you can do is thank God for a new day. We’ve all been there. You are not alone. I’m so sorry last night was so hard.

  2. There’s certainly nothing I can say to make it better (but I join with the others in the “yay it’s a new day” theme. I know on top of everything you described in your post, it is an additional “something” to share it all with us. Even without the spectre of autism, I know the disgust I feel with myself when I turn my daughter away when my frustration is born of my own issues and not hers.

    I guess the only thing I can send is the same thing I sent on FB last night.

    *hugs*

  3. I’m crying too, Jess. My heart breaks for you, hearing this description of such a painful night. I know that in the moment it can be really hard to see the forest for the trees, but even in this heart-wrenching story there is so much evidence of beauty, strength, progress and love. Brooke could not tell you why she was upset, and couldn’t quite self-soothe, but she had the words to tell you what she wanted (and, she made it through dinner). And Katie is just incredible. You and Luau have done such an amazing job with both of your girls. I can only hope that my daughter will have as much insight, compassion and poise as Katie does when she is ten. Lots of love, and sending you all the strength I can spare. xoxo

  4. Wow, you have two AMAZING kids!!!! I’m not even sure which one is more special – that Katie is an incredible kid!!!

  5. A friend posted this scripture that is so close to my heart… John 9:1-3. As He passed by, He saw a man blind from birth. And His disciples asked Him, “Rabbi, who sinned, this man or his parents, that he would be born blind?” Jesus answered, “It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him.”
    From Exceptional Family

  6. this is one of the tougher ones to read, I know, like there are any easy ones for me to read? me ole leaky eyes, I cry at your hello for God’s sake. who hasn’t snapped and felt like dog crap after? or been rebuffed by their child? or even had a hard night out, where the kiddo’s just didn’t pull it together? and where you just can’t “fix it”? but all of that in one night and consecutively, wow! and then the car….holy hell, that must have been a sight.
    the emotional toll of days like that build and I pray for easier/better days to come. “I can do all things through Christ who strengthens me”, Philippians 4:13.

  7. Tears….. and Prayers that things will only get better. Hugs so you know you are not alone. Thanks because you let us know, neither are we. Better days are coming, hold on.

  8. Thinking of you as you start a new day. I understand the self hatred and the having nothing left after pouring yourself into your ASD kind. Your ten year old did speak directly into your soul, and you wont forget it. And she is resilient. Hoping you get some time to bounce back emotionally. Thank you so much for pouring your heart out, it’s brave to be so transparent.

  9. Wow. Been there. But once again you said it like no one else can. I’m sorry. It is just so damn hard and exhausting some days. Xo

  10. I’d write more if I could see the screen through my tears… Either of those two things happening last night would have been difficult, but add the two together…most of us would snap under the pressure. you have amazing kids and an unbelievable way of sharing your pain with the rest of us. Better day today? I hope so. And if not? We’ll get through it together.

  11. I am so sorry, but I am always amazed and comforted by your posts because I could have written the same things about my son every day. Now, I could give a story like this only rarely. I wish I had been as in control of myself as you seem to be in your child’s crisis. The rarity of these episodes are due to putting him on a gf/cf diet. And his doctor still insists he’s not autistic. Keep staying as strong and loving as you obviously are. Things can always get better.

  12. Sorry to hear that as I feel the same as you. With our son, Kaiden, who is 4 now, is autistic. We go through the same types of things when we are out but unlike your daughter, he does not have a wide vocabulary. He just started really speaking words about 6 months ago and when he is sad, upset, or whatever, he cannot tell us why and we are always at a loss trying to figure out how to make him feel better.

  13. Some days are really heavy. Physically, painfully heavy. You’re doing great by your kids. We all have those days. Hearing that doesn’t make it any better, I know that, but know that your kids will be okay. Keep on, friend. Big hugs to you.

  14. Oh mama, what a night. It is a new day, we all get to start over. Here’s what stuck out to me, her saying “I’m crying,” describing herself. See, that’s where the Roc started, describing himself, what was happening, even if he didn’t have the words to tell me why or how to help. Now he can, and she will too. It’s hard during the firestorm of emotions to see this, but it’s coming. Believe in that. And it is not your fault, and you are an amazing mother to BOTH of your girls. I applaud her for trying something new, going with her father, even though it cut to the bone. That may have been a her coping strategy in the moment. Here’s to a new day.

  15. Once again I am left speechless. Sitting here in tears with a heart that bleeds for you guys. You are the best. Stay strong and hold onto the new day, every day and make each day what you can. *hugs* for all of you!

  16. First, big hugs. Those days suck. Alot.

    I want to suggest something thats going to sound bizarre, tho. With my son, who is now 6, we realized last spring that his behaviors were spiraling out of control (more meltdowns, more anxiety, more non compliance, and way more stims) the same time MY seasonal allergies started. We ended up doing a trial of dye free benadryl and damned if it didn’t help. We put him onto Quercitin for long term and cycle the dosage up and down as necessary. (he’s 50lbs, we go up to 500mg 3x a day). This spring has been MUCH nicer than last was.

    Is it possible that she’s got some spring time allergies going on that are adding to the brain fog and anxiety?

    • Jess, first I want to say that reading your post was like a punch in the gut. I’ve been there, and feel your pain. Please know that you have a whole support system that’s behind you.

      I’d also like to second what Joy said. When my daughter was younger, a dietician we worked with said that a third of all children on the spectrum have allergies, that may not present exactly like you would expect. It’s something to consider.

      Between allergies, and the time change that STILL seems to have an effect, my little one is “off” right now too.

  17. Oh, sweetie, I’m so sorry it was such a horrendous night. Sending you love and a hand to hold (and it’s got mallomars for you!)…praying for a stretch of good days to provide some balm for your wounded spirit. xoxo

  18. My daughter’s only reply to why she is crying: Because I’m sad.
    “Why are you sad?” is always my useless question: Because I’m crying.

    This morning, my husband found our daughter discovering that she is now tall enough to touch, spin, and/or break the ceiling fans if she stands up on the bed. We came downstairs to find her lying on the floor clutching her leg and crying in the study. There was the chair, next to the built in bookcase. And there was the uppermost cabinets opened up. We could only assume she went climbing again, and fell.

    We had to have her walk to find out if her leg was sprained or broken. And then I got to feel like the crappiest mother around for having the audacity to make the bed when I should have been watching my girl.

    She’s fine, by the way.
    But, OH! I want to scream! Autism just sucks.

  19. Jess – I read this and I think… I want to be so much for my own children, it hurts so deep inside sometimes. When RM cannot tell me why she is screaming out with every bit of strength she has… When her brother has been standing there for ten minutes, silently waiting to have his moment to show Mama the amazing Lego creation he has crafted… when both are pained and I turn around and the dishwasher is leaking all over the floor… or dinner is burning and of all things, the smoke alarm starts blaring…

    You are such an amazingly strong mother, Jess, and both of your daughters are so blessed to have you. No, you cannot take on every single situation without bending once in a while… we all bend… but that your baby girls CAN find relief, that your Katie IS so unbelievably empathetic and wise… all because of YOU, Mama.
    xo

  20. I didn’t have any adequate words for you, so I found these:

    “Love knows no limit to its endurance, no end to its trust, no fading of its hope; it can outlast anything. Love still stands when all else has fallen.”

    Find the bliss of today and hold it dearly, gingerly.

    You deserve it.

  21. I’m sorry. Those days make me shout “Oh, Holy He##” as I look to the sky and think “you’re overestimating me again, I cannot possibly handle all of this”….and yet, somehow we do. We make it HOME.

    The days get better Jess, they really do. One day in the quiet darkness of bedtime she will be able to tell you why, and you will know.

  22. Hi Jess, first let me say, I FEEL your pain. I think we all do.

    Please don’t feel guilty, you are a great mom and again, Katie is the best. I am new walking this path, my son is only three years old, his vocabulary started to emerge about 9 months ago and he can’t tell me why he cries either or what would make him feel better. I know the best way is to avoid the crying (screaming) from starting, because once it does, there’s no stopping it. I learned that once this starts, I am better off keeping my mouth shut, since every word I say just makes it worse. I just hold him and block any sights by applying deep pressure to his head/forehead with my hands.

    I do have a question and anyone here who’s more experienced can answer it for me. I find that I haven’t been outside for dinner, movies, or anything social in public with my son because it causes tantrums and meltdowns. I find that dinner is not worth it and he does not enjoy it. Is there a reason why you take Brooke for dinner despite the end result? Does it get better with time? Please help.

    I do have a friend whose 10 year old son is autistic and 12 year old daughter is NT. She says that she and her husband take turns taking their NT daughter out, so as not to sacrifice her. Please note that I am not trying to be judgemental. My opinion comes perhaps from being new in this game. Jess, I appreciate your posts a lot, and from my heart, I hope this new day is treating you well

    • Paula, for someone new to the path, …”I learned that once this starts, I am better off keeping my mouth shut, since every word I say just makes it worse. I just hold him and block any sights by applying deep pressure to his head/forehead with my hands.” Took me YEARS to learn that. You are ahead in that respect.
      In regards to outings, my personal take is that if its not enjoyable for the whole family, dont do it. We do some things separately with our daughter. As the years go by, some things do resolve, others dont. Im learning its not as important to do some things, as much as it is to find stuff that they DO enjoy. Then you lose that feeling of ‘missing out’. KWIM?

      • thank you Lisa! You are so nice. I appreciate all the advice and input from the experts! Best wishes

    • Paula,

      I preface the following with what I hope is always obvious – that I can only answer for my family and from our unique perspective. My answer may or may not even remotely apply to anyone else.

      That said, in answer to your question, we go out because it’s the only way that it can ever get better. The results these days are not always – or even usually – or even often – like this anymore. Nights like this are now far more the exception than the rule, but they happen. Such is this life we lead. 

      I can’t (or won’t) deprive my girl of the trying because sometimes it’s hard.

      We go to all of 3 restaurants – the ones that Brooke knows, likes and is comfortable in. One is McDonald’s – and the other two are places where they know us and love my girls. They both bend over backwards to help ease our way. 

      We have a toolbox full of tools to make it easier – headphones, a white board, markers. We walk out when she needs to, but we go because she asks to. 

      We go because she loves ordering from the waitress, even if it’s the same meal (based on the restaurant) EVERY SINGLE TIME. We go because she has a sense of pride when she orders her food. We go because given the amount of time that we spend dividing and conquering, the whole family enjoys being together when we can. 

      In answer to the second part of your question, for us, yes, it has gotten better. For Brooke, the progress has come from the practice – the repetition – the knowing what to expect. 

      We started with charts for sitting, visual aides for prompting, social stories for understanding – and a lot of failed attempts. 

      Among other things, I am hell bent on giving my daughter the tools to navigate the world – from stores to school to restaurants and everything in between. Sometimes we back off. Some things simply aren’t worth it. We have tried only two movies in the past two years. They just don’t make her happy. I’d love to go to movies as a family, but that just doesn’t work. For now. We haven’t been to a play or a show in far longer. 

      As individual families, we choose our battles. We decide what’s important to us and more importantly, what our kids can and can’t handle. We follow our gut the best we know how and push when we think it’s right and back off when it’s not. 

      So I guess that’s my long and rambling answer. The short version – we do it because we think it’s worth it and some things get better while others may not. You’ll find the things that do. 

      All the best to ‘you and your sweet boy. 

      • Dear Jess, THANK YOU, for taking the time to leave a response for me. I’ve been reading you for a couple of months now and I have an idea of how busy your life is.

        Your words are so encouraging and make me want to keep trying for my little boy too. It’s been a rough year for us as a newly diagnosed family. I am just learning to build a shell to protect my son and even myself from the looks of those who think he is just a little brat.

        It’s lovely that Brooke truly enjoys going to a restaurant with actual waiters! We can’t even handle McDonalds for now. It’s all too much for my son, but we have gotten better with social stories and other visual aides. The main problems arise with the unpredictable of life and events. When something goes even slightly different than planned, my son throws a tantrum and I can no longer explain anything else to him.

        I do promise you though that I will keep trying. I look up to you Jess, many thanks!

      • Paula, I have a 15 yr. old Aspy son and an 8 yr. old daughter on the spectrum. We go out to restaurants. My daughter LOVES going to a restaurant. I have an old ipod video that she would watch videos on for awhile, until I got a smart phone. She now loves watching Blues Clues and She-Ra on Youtube (with headphones). Try going to McDonald’s when there aren’t many people there. My son still prefers that. For us, the routine is that we eat dinner together as a family. If I tag teamed with my hubby, THAT would upset the kids.

        Jess, we didn’t do movies until last summer. We have discovered that the top row, corner seats don’t usually have speakers pointed at them. My daughter won’t even ask for her ear plugs when we sit there. (Saw “Tangled” twice)

  23. I hear you on this one (well, on all of them, but particularly on this one, with both kids!). What WAS IT about this weekend? Was it that damn huge moon, or something in the water? Everyone I know was out of their minds with their kids over the last seventy-two hours. Here’s to the hope of a better week!

  24. This one is just a kick in the guy. I think we’ve all been there to some degree, when the best laid plans just refuse to cooperate and we’re left wondering why the simple stuff has to be so damn hard.

    As I’m sure most of us do, I like to think that it makes all of us appreciate the small victories so much more.

    Hang in there. I know you’re already putting on your climbing boots, ready to get back at it.

  25. Jess, I’m another one whose spectrummy kid also does the round robin thing:
    “Why are you crying?”
    “Because I’m sad, Mommy.”
    “Why are you sad?”
    “Because I’m crying, Mommy.”
    Repeat endlessly, no closer to an answer, ever.

    I am so sorry last night was one of those awful times that those of us with kids on the spectrum all have. No matter how wonderfully it may be going, how many triumphs, feet forward planted, there’s always another night like last one, when it all comes crashing down. My heart goes out to you.

    And also, please know the world of good you do by writing so beautifully, eloquently and thoroughly honestly about it all. It makes those of us who are likewise also there know we are not alone, and helps those who are, luckily, not there to understand a tiny bit of what our lives are like. Hopefully this helps some of those whose kids are all “normal” to understand how when they see us on a good day, when our kids are looking near to normal and say to us: “Why Jakey seems so just like the other kids, you’d never know he’s autistic.” they think they’re being kind, but we just want to growl at them, because they are so not getting the whole picture.

  26. I’m with Autism Mommy Therapist – this weekend sucked for many. Noah, who is usually a good sleeper, has been up just about all night two nights in a row. It’s not like him. No good.

    ____________________________________________________

    Jess, I’m so sorry. That sounds absolutely excruciating.

    here’s a thought about the all-or-nothing concept – i.e. autism wins, you don’t. The way I see it, that just makes you feel worse, yes? If it helps, here is some lightness I see in the dark: after the stress of dinner, you remained calm in the storm (not a small trick); you tag teamed with Luau successfully (thank GOD for partners that GET IT); it may have been that Brooke read your stress and just needed a break – and YOU needed a break too, so from here, it sounds like her idea to go with Luau was actually a pretty darn good idea. Right? Gives you both some breathing room and as others have said, sounds like a great coping mechanism to me. Just see it as that. She doesn’t give a decision to go with her dad any more meaning than it should. She loves you more than the moon & stars, mama.

    And we all have not done our best work as parents, but you took the time to repair with Katie. So many parents wouldn’t DO that, but you DID.

    And my final mantra: when I’m having a particularly shitty day, I think, “well, at least I didn’t die in a car wreck.” Because that puts things a little more in perspective. Your poor car…but it didn’t happen while traveling 50 mph. And for that we are ALL grateful.

    lotsa lotsa love, R

  27. I sure hope you have a better day today. There is little I can offer. I feel the pain, I know the pain, but there are no answers. You are in my thoughts and prayers as you go through this next few days, especially. I sure wish I had more to offer. I am sorry. hugs!

  28. Wow! What an incredibly rough day, and even with everyone doing their very best, sometimes the wheels still come off and the whole thing just crashes. Hugs to you and your girls.

    Yesterday my granddaughter was caught in her own perfect storm all day too. Between the screams and the sobbing there was lots of stimming and brief glimpses of a sweet, loving, funny little girl trying to get through the day as well as she could. Today is better. I hope this morning brings relief and comfort to your family too!

  29. This post really got it through to me how tremendously difficult autism can make life. You do such an amazing job of coping, Jess. I know the feeling of self-hatred that comes from snapping, and responding with irritation and anger to a child’s very real need because you just have. nothing. left. to. give. If it helps, my breaking point is way, way…. WAY sooner than yours. You inspire me to greater patience.

    Also want to let you know, after reading this, I went to the teacher in my kids’ school’s resource room and asked what I can do to help her. She was positively delighted, and immediately started thinking out loud of what would be possible for her to do, just from having another adult body in the room. I know dealing with autism is a burden of love, and you carry it with such strength, but it looks SO heavy. I hope I can help lighten it a bit for the parents and professionals who care for the kids in our school.

    Finally, it really struck me when I read, “I could tell you about the car ride home when Katie so valiantly tried to keep it light, but I couldn’t do light. How she kept asking if I was all right and for the life of me I just couldn’t figure out what to say.” – I wonder if that was exactly what Brooke experiences?

  30. Dear Mr. President,
    Please light up the White House Blue on April 1-2 for Autisim awareness. Such a simple act would start a worldwide conversation that could have a profound effect on the lives of so many. As the mother of a daughter who developed autism after the age of two it was devastating watching her loose her ability to talk, socialize and even use utensils.
    Please take the time to authorize the lighting of the Blue Campaign for your “House”. We need your support. We wish our numbers were not growing but they continue to increase everyday. We are a club filled with “Warrior Parents” but our hearts continue to break everyday. We need your help and support.
    Sincerely,
    Victoria

  31. In the middle of it all…Katie is the angel that God sent you. She is amazing.

    I try to remember that when my eldest is over the moon with Aspergers and all of the heaviness that it brings, and my youngest (who’s also on the spectrum) tries to make it all better. I just have to thank God for that. That doesn’t mean we don’t loose it sometimes. We are human.

    Heres proof: http://confessionsofanaspergersmom.blogspot.com/2011/03/mommy-meltdown.html

  32. Wow not sure where to begin!!! I am sitting here with my autistic son balling over all you have written, seeing my heart and soul spread over this page, I feel naked, but finally not alone. I have been through this day more than once a week for years now and only recently found out why! This is my hell!! Please don’t get me wrong my children are my soul, but there are those moments when I am ready to check myself into the crazy house!! I have never met so much determination that I question the very mother I am, and shocked by what he says in his anger
    fits. I understand the hurt feelings that I am told not to show or the pain from not being able to
    help him. Yesterday we had a blow out on an overpass on a very busy interstate and he flipped out, I could not soothe his fear he was jumpy the rest of the night. I hate the autism that has taken the communication from me and my son. I cannot hold my baby when he is sick or scared cause he hates alot of affection and I love to hug and kiss on my babies but I can’t him and that kills me!!!!!

  33. I am not a crier, never have been, but I confess to welling up a bit just now. Praying for your strength and comfort, Jess. gail

  34. I have to tell you, my son and I had a huge blowout this Saturday morning. I snapped on him after a month and a half of regression. We wound up on his bed crying, with me apologizing like crazy. I have spent the last to days berating myself as a mother for this offense. I feel so much for you. I hope that God will lift the burden a little and give you a little time to breathe.

  35. Jess,
    Wow….I have no other words, but I am so so sorry that it was such a bad night. I can say with utmost honesty that I know exactly how you feel. I posted on my blog several weeks ago… a piece called “Jump Jump Jump”….a meltdown in which words bring no comfort only anxiety, stress, and more sorrow for our little guy. From being a person in the stands reading your blog….I would say the score from my perspective is Jess Family 1 and Autism 0……you made it through the night and I think that earns a big old point!!!!!

  36. My heart goes out to you! I am new to your blog, and have been amazed by your honesty and openness. Thank you for sharing so much and helping us all feel like we are not alone. You are both gifted and a gift! I hope today is a better day!!!!!!

  37. I am so sorry you had a bad day but I thank you so much for putting into words what so many of us feel and go through. I cried because once again… I could relate to everything. In fact I snapped at my typical daughter yesterday too. I feel horrible and I spent the entire day today researching sibling groups for her so she would know she is not alone. (Did not find anything in my area yet) I know like your daughter in her head she understands the situation, but it certainly doesn’t make it any easier when they want Mommy Time and we just do not have an ounce of anything left to give. I know I only know you through your blog, but non the less I do know you as we share a common thread. I hope the fact that you are helping others gives you a little bit of comfort. And like so many others have said today is A NEW DAY!!!

  38. Sometimes, autism DOES suck. Maybe Saturday’s Super Moon played a part too. We will never know. (My daughter’s meltdown was Friday at a museum that she loves.)

    Amen to keeping calm. I cringe whenever a friend or Brownie troop leader or family member or just anyone, says “You just keep so calm.” I want to scream that “I have no choice!” We do what we must because we love our children.

    It is apparent to all of us that read your blog that you love both of your girls fiercely. They have to feel it as well. I will only add that our children learn so much by watching us; and, if we don’t want our children to be too hard on themselves and too critical of themselves, we have to provide the example of how to accept our shortcomings, apologize when needed, learn from our mistakes, and carry on the best that we can.

    I do hope that today is better, for all of you. You’ve all earned/deserve it.

  39. Somehow your post here made me see more clearly what my oldest daughter went through, how her brother’s issues (autism and bipolar) and my divorce and so many other things put her in that impossible position of trying to support a mom who was carrying an impossible burden . . . my bipolar son is 14 and my daughter is 18 and moved across the country as soon as she could . . . this post makes me cry, esp for her lost childhood.

  40. Thank you for writing so that we can live it with you (and for me, since I can only speak for myself, recognize so much). Your witness is amazing.

    As are your daughters. Your whole family.

    Hugs to all of you.

  41. Oh Jess, So much here….Katie’s “It’s not your fault Momma” reminds me soo much of my youngest daughter trying to console me during a rollercoaster ride with her big brother, the ups are amazing, but the downs…yikes, and there she is, at almost 9…helping me, her momma , hold it together….the round robin “I Crying Momma” conversation. Oh that one gets me everytime…How I wish He could tell me WHY He is crying. The guilt over snapping at one of my girls for asking for Mommy time at what for me, is the worst possible moment, so I snap…..Oh Jess, You are not alone, and thank you for reminding me taht I am not either

  42. Thank you for sharing this. And thank you, Mommas, for sharing your links and stories and love. WE ARE NOT ALONE. We have each other.

  43. I literally ache just from reading your words. That awful weight of pain and guilt and helplessness… Questioning why my girl must be drenched in agony…

    Our girls are different, Jess. My girl doesn’t walk and has very few words to communicate. But, oh how I get it. When she pulls my hair and pinches me and sobs, and I have no idea why or how to help. And she claws my skin so much that I bleed. And the only thing I can manage to do is cry with her, as quietly as I can, until she is able to find calm.

    That God for a new day.

  44. I will keep you in Prayer, that Brooke may gain more understanding to let you know what’s troubling her and that God will give you understanding how to break through to Brooke and Understand what Brook is saying. I feel for you, I know how heart breaking it can be, when deep cries from a child with autism can not express into words what is happening. My sister’s child has Autism and at some point he gets axieties or social discomfort or just can not hear another angry person. And I would think this too shall pass. After when it finally did, it came down to this, just being there to offer him comfort was enough. God Bless your Heart, Your Mama’s little helper(Katie) and sweet Brooke~
    Matthew 6:32-34″Your Heavenly Father already Knows all your Needs, and He will Give You all you Need from Day to Day if you Live for Him and Make the Kingdom of God your primary concern. So Don’t Worry about Tomorrow, For Tomorrow Will Bring Its Own Worries. TODAY’S TROUBLE IS ENOUGH FOR TODAY.”

  45. I’m sorry you had a hard day. Your 10 year old is AMAZING. She reminds me so much of my 11 year old Zachary. Oddly I am a bit jealous of the way your daughter melts down. While I can hug and snuggle with my son when he is feeling good, when he is upset you cannot comfort him. If I whispered in his ear he’d lash out in a rage, if I gathered him in a hug he’d scream don’t touch me, and lash out at me physically. when he is upset we have to leave, leave him alone, which is a crushing thing to do. To leave him alone with no comfort. I have realized what is comforting to him, is not comforting to me, and I have to accept that. We can only do what we can do, and you did it all. It’s not your fault.

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