fair

Sometimes, it’s just hard.

When I can’t fix it.

When my baby hurts.

When the world is too bright, too loud, too big, too scary – just too MUCH.

I sit on the floor outside the theater holding my crying girl. I swear I’d done everything I could think of to prepare. But neither the noise canceling headphones nor the popcorn and gummy bears nor all the prep work in the world could get us through.

There was no epic meltdown. No kicking, screaming tantrum. Instead there was the heartbreaking, silent cry of a little girl whose sensory system was under attack. She climbed onto me, curled her little arms around my neck, and said “hug, hug, hug,” over and over again.

I couldn’t make it better. I couldn’t make it easier. It was just too much for her to take. All I could do was get us the hell out of there.

There were so many reasons that it should have worked. I’m too tired to detail them, but trust me – this should have been the one.

We walk the long corridor together, side by side.

“Jesus is my favorite Godspell friend.”

“Yes, honey, I know.”

“I like Zoe better than Elmo.”

“I know, honey.”

“They live on Sesame Street.”

“Yes, baby girl, they do.”

The scripts – the comfort of sameness. Order out of chaos.

I suggest going back in to try again. Her mouth opens into a tortured ‘O’. The tears stream down her little cheeks again.

We sit down on the floor to the side of the door and listen. How many times have we been here – just outside a door – listening to the world on the other side? Birthday parties, movies, kids’ shows of all shapes and sizes – too many to count.

A mother chases a toddler out the door – he’s no bigger than a minute. She and I exchange a smile. Brooke doesn’t notice.

As she scrolls through the home videos on my phone, my mind wanders back to the moments before the movie. As we waited for the slowest concession stand worker in the history of the world to finish her chat with her co-worker and scoop some popcorn, Brooke had done jumping jacks. I thought it was adorable. Someone else did not.

“Brooke, what are you doing?” I asked.

“Jumping jacks!” she shouted back.

Ask a silly question ..

I didn’t stifle my giggle.

Brooke looked up at me with pleading eyes. “Mama, she’s EMBARRASSING us in public again.”

I’d fought yet again with that all-too-common tornado’s brew of emotion – empathy for one child stirred into a healthy dose of anger in defense of the other – how dare she – and yet, of course, she’s eight. Of course.

The movie finally ends and we watch the parade of people file out. I search the crowd for Katie and Julie. Smiling four and five year-olds chatter on about how cool the Chipmunks were – I’m sure I see far more of them than there really are, but Jesus – enough.

An hour later, my girl is still not herself. I beat myself up for trying to bring her somewhere that can’t help but overload her system.

Three hours later I am still sitting up in bed. I want to scream. Or throw something. I want to know why it has to be so hard –  why the simplest things – like a movie – have to be out of reach. Why every little thing has to be such a PROCESS for my girl. Why a theater full of kids and their parents can sit happily through a movie without having to plan for every possible contingency. Why my baby’s life has to be HARD. I want to know WHY. She shouldn’t have to struggle. She simply doesn’t deserve hard.

Once in a while Katie will rebel against a ‘no’ with, “It’s not fair.” It drives me crazy. My response is the same every time. “What’s not fair is that there are children in the world without enough to eat. THAT’S not fair.”

But all I can think as I sit in the dark is, “It’s not fair.” It’s not fair that our children have to hurt disproportionately. It’s not fair that my nearly seven year-old can’t go to a God-damn movie.

It’s just not fair.

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66 thoughts on “fair

  1. No. It’s not. And i always struggle with not trying something, because what if THIS is the time it turns out ok? I go back and forth from “never again!” to feeling guilty about possibly underestimating his capabilities..Is it my exhaustion or his sensory integration that shapes my decision to try or not to try? We will keep trying because we want our kids to have fun and enjoy things and be happy. But it’ll NEVER be fair.

    • I could not have said this better. I am going outside *my* comfort zone to try new things. Jess, she is only missing out if it’s something she wants to do but cant. I’ve learned it’s more important that he’s happy in whatever it is he’s doing.

  2. I’m sorry, were you eavesdropping at my house this morning?

    The desire of one child to do something or go somewhere. The defiance of the other in response to being asked to do anything outside his routine. The fear of the parents that the reaction of the one child will ruin the experience for the other balanced against the desire to be fair to both and yet force the one to break routine even if only for a few hours. All the while, the overwhelming thought of “why does everything have to be so hard?”

    It’s alright to say “It’s not fair” once in a while without worrying that you’ve lost your perspective. You obviously have not.

    Thanks again for reminding all of us that we are not alone.

  3. Grandma (my Mom) always said, “Life is unfair” whenever I complained about something.

    I can only say, I’m so sorry. I wish I could make it better for all of you!

    I love you,
    Mom

  4. If you wanted to try again, AMC and Lowes theatres have sensory movies. They leave the lights partially on, and the sound is turned way down. If you want to talk about elmo and zoe while the movie plays, people just smile. It’s typically on a Saturday (once a month or so) at 10AM.
    We take Ben because his dad and I LOVE the animated movies. He doesn’t care so much, but enjoys the movie treats.

  5. Sometimes it just socks you between the eyes, doesn’t it?

    Depending on how important is the movie-experience for Brooke — does your community do “sensory-friendly films,” with the sound turned down and the lights on low and the explicit invitation that it’s OK to come and go? There’s a theater near here that does, and we’re hoping that the Chipmunks will eventually be shown there in that setup… not for Joy, who is nowhere near being able to sit through and understand a film, but for my “neurotypical” 7-year-old Rose, who can’t stand loud noises and has only made it through one theatre movie ever.

    Hang in there. As Russ said, we are not alone!

    • we do have a theater with sensory freindly showings – which i think is wonderful – but truthfully, the biggest challenge for brooke is not the volume of the movie itself (or the dark, which she actually really likes) but the noise and movement of other kids.

      i thought the headphones would be the saving grace last night – and they were until she suddenly took them off and refused to put them back on. then we were done for.

      what finally did her in though was a couple of kids at opposite ends of the theater who were crying and calling out. so, counterintuitively, a place that is accomodating to kids with sensory challenges (which often comes along with a propensity to cry, call out and, as you mentioned, come and go a lot) would likely be much harder for her.

  6. (((( )))) This is me hugging you and holding on to you long enough to try to hide my tears but the sniffle gives me away. It is not fair and I vaciliate between sorrow and anger over that. Love.

  7. My sisters son with Asbergers was never able to handle the loud movie theaters when he was younger. Now at 15, he sees all the movies he can. Give it time…she’ll get there. She’s accomplished so much this year!

  8. I feel your pain & your little girl’s pain. It hurts beyond belief for all involved. And others have no idea how blessed & easy they have it.

  9. I know how you feel my HF autistic son has only been to maybe 5 movies and most have been spent with meltdowns and tears on both parts. I find going to stores can be so much worse it’s hard and our babies dont deserve this :(

  10. My mom always told me life isn’t fair, but I have come to discover that life often is really really not fair. And that stinks.

    K hasn’t figured out that we are different… The day is nearing, I can feel it.

  11. I know exactly how you feel. Our son is now 23 and we are still going through the “it’s not fair” stage. When we go to the movies…we found a $3.00 theater, $1.50 on Tuesday, and that is when we go. That way, if we have to walk outside or leave completely, we do not feel the monetary loss as bad. We just kept trying – through all the stares and rude comments – and now he sits through a movie about 95% of the time. There is always hope and I pray for a light at the end of the tunnel for all parents and family and friends affected by autism. Stay strong…we are all in this together :-).

  12. I took Charlotte to see her first movie at the theater a few weeks ago for Princess and the Frog. She did *ok*. She started out by covering her ears, then putting her hat on and pulling it down over her ears. By the end of the movie she was in my lap with her face buried in my chest. She claimed she was upset because she wanted Tiana to be a Princess again and not a frog. (I don’t think that was it though.)

    Too loud and for her, the space was too big, ceilings too high, those kinds of spaces seem to overwhelm her. Theater movies just aren’t her thing. And that’s okay.

    Sorry it was so frustrating for you and Kendall.

  13. AMC Movie theaters have started to play ‘sensory friendly movies for kids’ Once a month they offer a show at a reduced price, lights are brighter, volume not so loud, bring in your own GF/CF snacks and the ‘sit quietly’ policy is ignored. Check your local listings (hehe)

  14. Life is not fair. I recall a posting on facebook from a friend with a 13-yr old child with spina-bifida. She recalled how she finally got her son out after a long spell where he could not get out. She told us all camly how she had to administer CPR in line at the Target. Life is not fair. My point is, as a parent of a autistic child, I have had to change my expectations of what is important in life and what defines a happy experience for my son. It was the hardest lesson I learned in a long time, but so very important.

    • “…Life is not fair. My point is, as a parent of a autistic child, I have had to change my expectations of what is important in life and what defines a happy experience for my son. It was the hardest lesson I learned in a long time, but so very important…”

      Michael, dont know if you’ll see this – but I want to whole-heartedly agree with you. Once I accepted this, I found that I really… no, WE really enjoyed our experiences. :)

  15. I understand what you are going through. Before my child was diagnosed, we tried to go to a movie with my nephews and cousins and it was a disaster! We have been working on this very slowly and I am glad to say we have successfully made it through 2 movies. I think what really helped us is we started out with an older movie theater (you know like the reduce price cinemas, that get movies 1 or 2 months after they are released. Also I’ve noticed the sound system is not as loud) and we picked an off day and time so that it was not so crowded. The 1st time we tried it, there were only 3 other people in the movie. Next time we tried a little more peak hour with more people attending, at the beginning he needed some calming, but once the music started he was ok (he loves music). So I would suggest trying this and hopefully you will have some success. I will send up some prayers, because all children deserve to enjoy a movie.

  16. I’ll have to wipe away these tears quickly, so my daughter doesn’t see them. I have been where you are countless times, with my now 11 year old. It is perfectly fine to say “It’s not fair!” because it’s not! But don’t give up! Through the years, she’ll make those gains and you’ll move on to other frustrations. I’m sure if you think back to a few years ago, there are things your family can do now, that you never thought would be possible.

    Here’s a movie going tip: We used to wait to bring my daughter into the theater until the movie was actually beginning. This took a little extra planning but it helped eliminate the extra time spent in the seats and allowed her to avoid those overwhelming movie trailers that seemed to scare her.

    Best Wishes for the New Year to All!

  17. HUGS to you & your little girls! Its hard on the dx’d kids but its just as hard on our ‘NT’ kids. I have 5 boys, 3 of whom are diagnosed on the spectrum. It gets better with age, but its never a walk in the park. Know that there aew others going thru the same thing~ You are not ALONE!

  18. I’m so sorry, Jess. I understand completely.
    But maybe it’s through your loving documentation (or maybe because I have distance from the situation) that I can’t help seeing this from another perspective. Your amazing girl accomplishes so much – SO MUCH!! – and this is just a bump in the road. And everyone’s allowed to have bumps in the road – but they may look different than our children’s.
    Also – Noah taught me that he changes ALL.THE.TIME, that that bump may just cease to exist next time. He teaches me this lesson over and over again. Try again in a little while, next time there’s a movie she wants to see. You could take her out of school a little early & go when the other kids are in school, so there’s less movement.
    Something else that just hit me: have you thought about putting “Godspell” on a Zune/Ipod where she can access it on her arm during situations like this? That’s how Noah gets through the bus ride, doctor visits, waiting times, etc.
    I’d tell you to keep moving, but I know you already are. XO R
    p.s. You’re awesome.

  19. I feel your pain. I know the frustration and sadness you feel because everything is so much harder for our kids. What gets me down the most is when I do everything in my power to make something successful and it still fails. It can be crushing for morale. It isn’t fair. It just isn’t. I know my comment isn’t the most uplifting (I am coming off a visit to NJ with my son who woke up for good at 2:45 am the first night and 4 am the second!) but please know that their are others out there who completely understand.

  20. My name is Mike and I am preschool disabled teacher. I do not have an autistic child but I do know there are movie theaters around the country that are sensory friendly. My heart goes out to all of you for being such brave parents that never give up.

  21. I understand. It’s so hard to Cherish Every Moment when our babies can’t even BE in the moment without pain.

    Our babies look “normal” to the world…they haven’t lost their hair to chemo; they don’t necessarily have wheelchairs; 10 fingers, 10 toes…so the world doesn’t GET it.

    We have to educate them. ONE…PERSON…AT…A…TIME.

    Hang tough, Mommy…

    • These exact thoughts go over in my head again and again….UNDERSTANDING is key….I think when the world around us is more understanding and educated, it might give us a little energy boost to keep on going even more than before…
      Well said!!! =)

  22. And then there are kids on the spectrum, whose parents refuse to listen to their cries, who threaten them physically if they don’t “get it together” and deal what what is causing them distress.

    Brooke doesn’t need no stinkin’ chipmonks.

    She is loved beyond measure. She is understood.

    And yes, sometimes it is damn hard.

  23. I hear you. Foster is overwhelmed by both the kids and the scary scenes. Any tension (even slight) is perceived as “scary.” Practically every movie ever made has some conflict (and many kids have way scary scenes to boot). He tried to run out of the theater when we went to see UP – and that’s a pretty laid back movie… the kids around us looked bored to tears, they were so quiet.

    Meh. I want to say something encouraging (kind of) but I’d rather throw things with you.

    xo

  24. My son was diagnosed with PDD in October of this year. He is 3 1/2 and everyday I think to myself how unfair life is. I also realize that there are people who are dealing with situations worst than what I am dealing with. I always knew my son was different since birth. He would literally scream to the top of his lungs when the nurses would change him, and before he was a year old he would always cover his ears. On his first birthday everyone sang happy birthday, and he ran and held on tightly to my nieces legs. On his second birthday he didn’t interact with anyone, he actually went to another room in the house where he could be alone, and just stared out the window. I never knew what was wrong. AUTISM never crossed my mind. He would exhibit impulsive behavior. I would take him outside, and he would run off, and run in the street not realizing he could get hit by a car. Thats when I decided to have him evaluated by a neurologist. It was then my worst fear came true.

  25. My son was diagnosed with PDD in October of this year. He is 3 1/2 and everyday I think to myself how unfair life is. I also realize that there are people who are dealing with situations worst than what I am dealing with. I always knew my son was different since birth. He would literally scream to the top of his lungs when the nurses would change him, and before he was a year old he would always cover his ears. On his first birthday everyone sang happy birthday, and he ran and held on tightly to my nieces legs. On his second birthday he didn’t interact with anyone, he actually went to another room in the house where he could be alone, and just stared out the window. I never knew what was wrong. AUTISM never crossed my mind. He would exhibit impulsive behavior. I would take him outside, and he would run off, and run in the street not realizing he could get hit by a car. Thats when I decided to have him evaluated by a neurologist. It was then my worst fear came true

  26. Yeah, it’s not fair. Life isn’t fair.
    My 5 yr old son was recently diagnosed with Asperger’s Syndrome. I’m just glad we made it through Christmas without too many major tantrums. He just isn’t sleeping much. He was so worried about bad guys coming with Santa. He figured if Santa can get in the house, so can bad guys.

  27. Oh, sweetie, it’s NOT fair. And it’s OK to say it out loud. Acknowledging the feelings doesn’t negate the love and the belief and the hard work your whole family does. Sometimes you just have to say it. It’s not realistic for any one to expect you (us) to simply “adapt” all the time; it’s exhausting and it’s hard work.

    All that said, I loved Red’s comment and suggestions about the ways in which Kenz is changing and that maybe you could try again at a different time.

    If there’s one lesson Nik keeps teaching me over and over (um, yeah, I keep NOT getting it, apparently) it’s this:
    Not now DOESN’T mean NOT EVER.

    I am so proud of Brooke for how she handled her distress. “There was no epic meltdown. No kicking, screaming tantrum.” PROGRESS. Just measured by a different yardstick. Progress none the less.

    Sending you love and hugs and barrels full of understanding. Oh, and a large dollop of kudos that you even attempted it. Truly. We are not even close to trying yet.

  28. Jess, do movie theaters in your area offer “sensory-sensitive” days? Ours does. I’ve heard in general, AMC theaters do, but I know that approaching theater management with this idea can be successful.

    Here is how it works, the theater offers a current family friendly movie at a time different from regular showings, they leave the lights on, turn the volume down and allow kids to move around and make noise. Our theater even discounts these showings and advertises throughout the special needs community. The movie is usually packed and they sell a lot of concessions and tickets to people who don’t normally go out to movies. It is a win-win-win for all. Our theater does this once a quarter but some theaters do this once a month.

  29. All I could do a I read your post is cry. I deal with the same issues and feelings of helplessness with my son, Jacob. I know it is a cliche, but it really makes my world just a tad easier to deal with knowing that there is someone else that feels the exact same way as me… I also have another son who is 3 years older than jacob. He too likes to think of himself as “inconvenienced” by his brothers disease. I remind him that just like God has a special plan and place in his heart for children like his brother, he also has one for the siblings of children affected with Autism. It seems to put things into perspective for him….

  30. I get it. We’re living it too. Hugs to you.

    You’re such a fantastic mom for trying, exposing her to different places, and then knowing when enough is enough for her.

  31. I read this and I thank God other people have similar if not identical experiences. Someone said to me the other day, “how do you do it?” REALLY??
    we do it because we do and we can and we don’t who will? The tape plays over and over again in my head for everything from “why Johnny?” to “should I even attempt to do this again?” You all know the drill. Reading this really does help. And I will continue to pray and have hope that some day it will be better.

  32. Wow, I don’t know if I can top some of these comments. You are not alone and it stinks that so many of us have Autism in our lives. I had 4 sons before my daughter Angelia was born. She was diagnosed with PDD/NOS when she was 2 years old. Occasionally I cry as I ask God “Why Me”?, I became a mother of twin boys at the age of 16, gave birth to my 3rd son 18 years later so I have always been taking care of others and I feel blessed. I love my children unconditionally and feel that I was selected to be a parent of a child with Autism so I can continue to be the parent that I became at such an early age. Our first outing to the movies was so bad for Angelia that I haven’t tried it again in over a year. You are braver than I since you did make the effort. You handled the situation so well.
    I do believe that it will get better as our children get older.

  33. Your right it’s not fair. Not fair that I have to watch my baby work 1000 times harder to try and regulate himself and to see him struggle with everyday activities. Not fair that my son is about to turn 4 in 2 weeks and I just heard him say “lud you” (love you) for the first time.

    For a long time I really felt like there was no light at the end of the tunnel, that things are always going to be like walking through quick sand. I was watching home videos the other day, and saw what he was like 2 years ago, and when we were not aware of what was really going on. Those made me see how far he has really come. Patients is a virtue. Hearing him say love you was like we had counqured a mountain.

    Keep your head up, and your spirits high. There is a light, just keep moving forward. And it is ok to feel like it’s not fair. With all the tantrums, and soothing, and loving, and giving comfort, we forget that it is ok to do those things too. We deserve a breakdown too.

  34. It’s not fair, I can only say that I understand exactly how you feel. I don’t know how to stop feeling this way, so I have no useful advice. You and your little girls are always in my prayers

  35. I’m so sorry, Jess. We sat through the Chipmunks two days ago and I didn’t think John would be able to bear the noise (so loud! at a non-sensory-friendly film) but what saved him on this particular day was his dad’s itouch. He played with it the entire hour and a half we were there. I know Kendall has a hard time with other kids. Usually we deliberately wait to take our seats until after the previews have aired, but I have spent many a time waiting for his dad and brother in the lobby because it was all just too much. Sending love and hugs.

  36. oh my sweetness, no. it’ s not fair. times like this just fucking suck. it sucks to see one’s child bombarded, pained, and overwhelmed. it sucks to plan every last detail with calm and mindfulness and sensitivity and creativity and still be on the other side of the wall. it would be one thing if one was alone on the other side of the wall but to be there with one’s crying child. shit. it just sucks.

    thinking of you and sending huge love.

  37. I’ve been there with my 11-yr-old version of Brooke. She hates it and now has the words to tell me so. When my NT 6 year old wants to go, I always offer to take my daughter along but let it be her choice. There are plenty of NT kids who also don’t like movies, roller coasters, and “fun” things kids are supposed to love. I feel like waiting for the DVD to come out just makes it more exciting (glass is half full). Did you at least get to hold hands on the way out?

  38. Jess…I cried so hard reading this because I’ve been there with my son. If you were at the screening on Saturday at Sea Turtle Cinemas, I was right there with you. I fretted for days whether to bring my son, thinking he would freak out the minute the movie started. He’s done it in similiar situations, but I keep trying new experiences for him. My son shocked me. He just walked up and down the steps all around the theater, stopped a few minutes to watch Alvin and the Chipmunks, then continued his stroll around the theater. At first my instinct was to try to sit him down, but I realized that doing so would be for my benefit not his. So I let him walk. He actually stopped and sat with me for 2 ten minute breaks and ate popcorn with me. I was so proud of him. It is those moments that make us keep fighting for our children to have “normal” lives. Lots of love, hon. Stay strong.

  39. It is not fair and I think this everytime I take my daughter to the movies as well. Sometimes we make it through but most often not. I have found that AMC does a screening once a month for autistic kids, check out the Autism Society website and see if it is happening in your area. The lights are up, the sound is down and everyone in there can relate (that’s the best part).

  40. Well said. Very well said. Thank you for sharing. Been there, done that, blogged about it…but guess what? It’s still so effin’ nice to hear someone else who gets it too. One day at a time… and some days? One MOMENT at a time!

  41. Very nicely worded. I can feel your anger! I go through the same thing with my 6 year old and I have been through every emotion especially anger. My husband and I have tried kids shows…The Wiggles, Sesame Street Live, etc. just to have our little boy suck his wrist and his head in our necks. We always have high expectations and hope that each outing will be different and he will come out of it. We finally quit spending the money! I will say this, everything came into perspective 2 weeks ago while my son was clinging to life with H1N1. I prayed for God to spare his life and he did. To have my child back …alive with autism beats the alternative. I feel like I can handle anything now that comes our way! He didn’t die. He doesn’t have cancer. He doesn’t have a life threatening disease. He is autistic and alive and brings us so much joy every single day. You just have to look at it another way. God Bless these special children!

  42. even if AMC has sensory friendly screenings, reality doesn’t. it’s just difficult finding those spaces…not just where things are comfortable on a sensory level, but where it feels okay to react badly. you and matt…you’re the safe space for her. not the place she only feels okay, but the place where she feels okay being herself, with all that entails. the good moments, the painful one’s.

    i think the biggest danger with these issues is compartmentalization. period. that’s the biggest one, over time. feeling pain in settings where most people are okay…and slowly learning to hide away behind masks of normalcy. so…it’s amazingly nice to have people one can trust…people who accept the lack of mask, the genuine reactions, as painful as they are, and unfair.

    it’s a bitter thing, but beautiful for that reason, the way you, as a mom, felt pain like that yet gave kendall the space to hurt and script and feel.

  43. I feel your pain. The hardest part for me is always balancing my children’s needs against one another. It’s hard enough as parent to grieve for the things in life that autism has stolen from us, but to see your 9 year old suffer those losses along with you is heartbreaking. I always wonder how this will affect my NT daughter who will never remember a time in her life that autism did not cast its long shadow over our family life. I at least got to become 35 years old before autism entered my life. Of course for my son, autism defines his life, but he doesn’t actually understand any of that, so thankfully he gets to be blissfully ignorant. A silver lining.

    Not fair, not fair, not fair!! Smile when you can, try to find humor in every day and joy in the little triumphs. It is a very long hard road to travel.

  44. I sat here & read your post and the tears began to stream from my eyes. Your event at the movie theater brought me solace in the fact that indeed I am not alone in this struggle. The everyday decisions of “will this be too much” or “did I think of everything?” People who do not walk our walk, just say “oh, they are spoiled” or that they need “more discipline.” It aches my heart. There are days that go smoothly and I hold on to the memories of those days in order to get through the many that do not go so well. Thank you so much for sharing your experience and reminding me that there are others walking this walk as well!!

  45. Jess, hang in there! I just took my 5yr. old severely autistic child to the theater several months ago. I took him and my oldest so to see cloudy with a chance of meatballs. The best idea I had ever had. I took them out of school and there was not one person in the whole theater with us. It was the most wonderfullest experience with my son. He sat very still and just couldn’t believe how big the screen was. He even almost went to sleep. Try taking her on a day when everyone is at school, working or whatever. Just you and her. See what happens then. Don’t forget you can even ask the theater to turn down the movie some so it doesn’t bother her ears. Good Luck and hang in there! We go thru this all the time also. But you can’t give up! You dust yourself off and go back for more! You’ll make mistakes. We still do unfortunately, but it happens. We try to make the best out situations that sometimes can not be controlled! Your not alone in this fight! God bless you and your girl’s!

  46. I’ve had a really tough week. I’ve been stuck in an “it’s not fair” rut. There was no catastrophe, just lots of disappointments that triggered this mood. I don’t have the energy to try to think positively or count my blessings or focus on my daughter’s progress, like I always try to do. I even started to say things like, “OF COURSE, something went wrong. Something ALWAYS goes wrong.” That’s not me.

    I know I will get through it, and I know that even when I do, it still won’t be fair. Jess, I feel your pain, and appreciate how much you do to ease mine by reminding me that I’m not alone. Wishing you and the family all the best in 2010.

  47. Oh Jess, thank you for sharing this! I handed the laptop right over to my hubby who has taken our son to the movies twice. I still don’t have the chops to do it. I totally understand “There were so many reasons that it should have worked.” A hood, earphones, sun glasses, chewy foods, a straw to drink from…my hubby wore a hood too. They looked like the unibomber. I wouldn’t have sat near them! Ten minutes. My boy lasted ten minutes before he needed to leave the theatre. I think they came back in at one point but regardless, they did not see much of the movie.

    The second time was definitely better. Not stellar, but better. We recently went to the “real” Nutcracker downtown. I will spare you the details, but at one point, I removed the snap-off hood of his winter coat and he wore it to dull the sound. He insisted on putting it on upside down. He looked like the flying nun. Honestly! I could not get it together. I got the giggles and had to play it off so he did not think I was laughing at him (which I wasn’t, really…I was laughing at Sally Fields, I swear!). My poor guy who was doing the absolute best he could!

    You know the bottom line is for them to enjoy themselves. I know, despite the feelings, you are always on target with Brooke. In the end, my son was so proud of making it through those 10 minutes of that 1st movie. It is so unfair, but Brooke is SO blessed to have YOU! It is how it is supposed to be.

  48. It ISN’T fair. You’re right. No amount of “sensory friendliness” would make any theatre tolerable for Jack either. And you have every right to feel discouraged every once in while.

    I like your shoes. Want a cookie?

    Hugs.

  49. It so isn’t fair. And for those of us with “typical” children who complain about our day to day trials and tribulations, we should walk a day, no an hour, in your shoes. God bless all of you who deal with these issues every minute of every day. God bless your children who are so clearly blessed and loved. And to hell with all of those namby pamby people who don’t “get it”. Be who you are and let your babies be who they are:-)

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