That Child Screaming on the Plane… is Mine
“Excuse me. How old are you?” The woman’s question broke through Lucy’s screams. We had boarded the plane, found our seats and begun doing homework, at Lucy’s request. Luce was in the window seat; I was in the middle, and Leah on the aisle. Aaron was seated a handful of rows behind us in the emergency exit row. Most planes don’t have the legroom for a guy who is 6 foot 5. I have my own complaints, like, my feet don’t reach the floor, my legs swing like a toddler, and by the time we land my knees hurt and my feet are swollen, but that’s nothing compared to flying with your knees smashed against the seat in front of you. (So I hear)
We were finishing up math, only 2 pages left of a week’s worth of homework. This was our flight home from Cancun and the last chance to wrap it up before she returned to school tomorrow. We did the first problem together. Lucy was doing the math, I was writing in her answers… and then… well, to be completely honest, I have no idea what set her off. “What makes Lucy cry and scream?” <---that my friends is the million dollar question.
Something happened… or maybe nothing happened. Someone coughed? Cleared their throat? Slammed a door? A baby cried? The wind changed? Everything. Nothing. The tirade began. Ear piercing, high pitched, screaming, that went something like this, “I HATE YOU! YOU NEVER HELP ME! YOU’RE STUPID! STUPID! YOU’RE A TERRIBLE MOMMY! YOU NEVER LISTEN TO ME! I HATE Y-OOOOOOOOU! (Repeat, non-stop… for 45 solid minutes)
She started her rant before they closed the airplane door. She continued through the safety announcements and hadn’t let up by the time we were allowed to use electronic devices and were free to move about the cabin. 10,000 feet of screams.
There is nothing I can say to stop her, no threat. No look. No words. My response or reaction just makes it escalate. I put on my sunglasses and my headphones and am surprised at how the music drowns out my daughter’s screams. I pop one headphone out and announce loudly, “I hope you all brought headphones!” What else can I do? Then put the headphone back in place. This infuriates Lucy all the more. She takes it up a notch from ear piercing to shrill. All the while at top of her lungs.
People throughout the plane are shooting hateful glares and glances our way. I can hear their helpful advice, “If that were my child, I would smack her!” Do you know how much self-restraint it takes to keep from throttling her? Do you? I put her in one room and I go in another room and I cry. I don’t know how to break her. In so many ways, she’s already broken. What’s left to take away? “That’s it! No walking for you!”
I’m sure the people on the plane were questioning my parenting skills. Hey, let’s be honest- I question my parenting skills. No one has ever had a “Lucy” before and she didn’t come with a manual. “What to Expect When You’re Expecting” didn’t include anything about fetal surgery for spina bifida. I threw that book away. “What to Expect in the First Year” had nothing about a child who screams for their first 9 months, almost dies in your arms and has sensory issues that cause her to startle and cry like a newborn until age 7. She has managed to knock out the cry now, but the startle still sends her reeling. She’ll tip right over if we cough without warning and with the cold and flu season escalating, there is no safe place for this child. Oh, please don’t exclaim in front of my child, happy- “WOW!” sad- “SHOOT!” or otherwise. You’ll see the startle, then you’ll apologize for it, just drawing more attention to the thing she can’t control. She gets embarrassed and the whole thing snowballs. “Just keep swimming. Just keep swim-ming.”
“How old are you?” The question from the woman in the aisle, leaning in over Leah, surprises Lucy and Lucy shuts her trap and tucks her chin in embarrassment. This must be my guardian angel! I half wonder if Aaron enrolled her in helping me out, sending her from the back (he didn’t). I smile at the woman. Lucy won’t answer. “She’s nine years old!” I draw it out, grinning.
“Nine? You are nine? I was pretty sure that noise was coming from a child who was only two or three years old… you are nine?” Her voice was more stern than angry, but tinged with a tiny bit of compassion… tiny… or maybe she was just tired. “Do you realize you are acting like a two-year-old?” The stranger continued, Lucy still doesn’t answer and doesn’t look up. “There’s an entire group of us in the back of the plane, we are all tired and trying to sleep and you are REALLY disturbing us. The noise is unbearable and the entire plane can hear you. You need to stop this nonsense and be nice to your mother.”
I smiled at the woman. I was really thankful. It takes someone else, someone Lucy doesn’t know. There is nothing I can say to stop her. Besides, she’s heard it all from me a million times before.
The woman returned to her seat. Lucy looked up at me and said, “I’m ready to finish my homework.” We finished both pages and for the remainder of the flight, 3 hours, Lucy was absolutely pleasant.
“Did you send that lady up to save me?” I asked Aaron after we landed in Phoenix. “No! I saw her get up and talk to you guys. What did she say?” I replayed the encounter for Aaron, who, like me, smiled.
We made our way through the terminal. Found our gate and plopped down. Quite some time later, the woman from the plane showed up and sat on the row directly behind us. I didn’t notice, until Aaron said, “I guess you didn’t get enough of us on the plane!” She turned around and looked surprised.
Then she started, earnest, but hushed, so Lucy couldn’t hear her, “I am soooooooo sorry! I shouldn’t have said anything. After I sat down, I saw you guys signing and I realized that maybe the little girl was deaf and then when you got off the plane I saw that you put her in a wheelchair!!! …And I thought, ‘Oh great! I am going to Hell!’- I should have kept my big mouth shut!” I stopped her, “No. No. I was SO glad you said something. I actually thought my husband sent you up to save me! No one ever says anything! They don’t dare say anything! They look at us like they hate us, but they don’t say anything. The flight attendants see us board with the wheelchair, so they don’t even say anything because they KNOW she has disabilities.”
Once, a flight attendant actually got into it with a passenger who had turned around and “SHHHHHushed” Lucy! That flight attendant started hollering, “That child has disabilities, you don’t treat her that way!” and the passenger shot right back, “I’ve worked with kids with disabilities and THAT child knows better!” And mostly, I just wished a hole would open in the plane and drop me out somewhere far below the two strangers arguing over my child’s deplorable behavior…
“But you were right,” I continued, “there is no reason for Lucy to act that way, disability or not, it doesn’t work. Clearly it doesn’t work for anyone on the plane!”
I gave her the short version of The Traveling Coleman Family Circus- Leah is deaf. Lucy has spina bifida and cerebral palsy. We all sign. Lucy seems to have some sensory issues, caused by cerebral palsy; her nervous system seems underdeveloped in some ways, even though she has a completely capable and brilliant mind. No, there has not been an official diagnosis other than CP and spina bifida, no, I don’t know if there is medication that could reduce Lucy’s sensitivities. And thank you again for having the guts to say something!
We boarded the next flight, heading home to Salt Lake City. This time I was flying with a plan. Aaron was far behind me getting Lucy out of her wheelchair and gate checking it. I knew Lucy was safely out of earshot, “Excuse me…” I said to the woman just ahead of me in the aisle, “Hi there, ummm… this may sound odd, but I was wondering if you’d do me a favor… If my child starts acting like a turd, would you please come over and sternly ask her to cut it out? Thanks.”
Tags: children, Coleman, disability, Lucy, Rachel, travel
November 16th, 2009 at 12:54 pm
I’m printing this out, changing the name to Jack, making copies, and keeping it on hand daily! Awesome!
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November 16th, 2009 at 12:55 pm
Not that this is my actual story, that came out wrong— I meant the part about telling the kiddo to hush. Sorry.
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November 16th, 2009 at 1:02 pm
Wow! Jack has what appear to be some sensory sensitivities too. His sensitivities play out in gut wrenching sobbing that literally makes him get choked for air. I thought that was miserable. I can’t imagine the screaming, I hate you. Thank God for that woman. Does talking to Lucy outside the moment help? Jack seems to do better with loud startling noises now that he has learned to say Loud. Obviously Lucy is a lot more verbal and saying loud is probably not helpful for her. Maybe I’m just being naïve but I keep thinking that there’s got to be some one to help my sensory sensitive son and some way to help Lucy too.
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November 16th, 2009 at 1:14 pm
Rachel I love the way you write. I get such a clear visual of everything that is happening. I’m glad that someone stepped in to help I’ve done that before only to get yelled at by the parent. It makes you a little gun shy to step up the next time.
You are an amazing mom and example to us all… no matter what Lucy yells at you LOL
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November 16th, 2009 at 1:18 pm
THANK YOU for posting this! My son is 4 and has had sensory issues that we are just now beginning to understand. I have been you in this situation SO many times, beating myself up for being a terrible mother and having an out of control (also brilliant, also sweet) little boy. It isn’t his fault. They can’t help it. And since I have always admired and envied your attitude and positivism and confidence, I am thrilled to know that you and I often have the same experiences – parenting a child with sensory integration issues and all the challenges that entails! I will remember this, Rachel, when we get enough courage to travel anywhere again, and try to enlist the help of strangers!
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November 16th, 2009 at 1:21 pm
I can sympathize with you on the sensory issues as we are always trying to keep Isaac’s world calm and controlled. If Isaac could talk(legibly) I wonder if that is what he would be saying when he has his meltdowns?
Thank you for sharing.
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November 16th, 2009 at 1:24 pm
On my last flight, a parent had their 7 year old pee in a container (under an airplane blanket) across the aisle from me during the decent. I believe that is the line not to cross – you’re doing just fine.
But that brings up an idea – the only place to escape on an airplane (without accelerating 9.8 m/s per second and depressurizing the cabin) – would be the lavatory. Could one use that as a temporary cry-room/non-public parenting room where you would have the freedom to parent in private?
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November 16th, 2009 at 1:26 pm
WoW. This really explains your tweets from that evening. I don’t know what to say, except that I’ll be praying for you. And, the next time Calyssa has a melt-down somewhere (Safeway or Target, perhaps; I haven’t flown anywhere in years), I’ll pray for you again!
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November 16th, 2009 at 1:41 pm
I can so relate
Hopefully your next trip will be uneventful 
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November 16th, 2009 at 1:41 pm
I have never been in this situation myself, but I have been on planes with screaming children. I find I can tune them out. Rachel I have a suggestion that may get you the understanding and help you need in times like these without you having to say a word. You are a great mom, and you know it, so let others know how to help. I learned this little trick when my mother-in-law suffered in public with Alzheimer’s disease. Not the same issue, but similar public humiliation for her. We carried little business sized cards with a simple explaination, and suggestion for how to behave around her. This made the people around us more comfortable. It could have saved your “angel” her embarassment, too. Keep up the great work!!!!
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November 16th, 2009 at 1:56 pm
Heather: Hey, I’m happy to do anything to help those who are marching up the same path, just a few years behind us.
Marie: Yes and No. We talk outside the moment and she ALWAYS apologizes, she understands the impact and inevitably something happens and the behavior repeats. In part, even though it’s not the most shining, fabulous reflection of me or my children.. I posted this in hopes that SOMEONE can point us in a useful direction… medication?… is there actually a diagnosis?… do most children with CP do this?… what type of doctor could even help us? Also, I know there are enough of “us” out there dealing with disabilities. Laying it out might help someone else who just needs to know they are not alone.
Ronai: I am giving you ALL permission to step in and reprimand my child:)
Trisha: I don’t think I am close to understanding these sensory issues. Just today I thought (for the first time) “Oh my gosh! What if she CAN’T control it! What if she actually has brain damage that impacts her behavior and MY expectations are unrealistic!” Just day, Trisha… and she’s 9!
Cricket: Doesn’t it seem impossible to try and keep their world calm and controlled? I have tried. We stopped going places for a while. We’d go to a friends for dinner and Lucy would choose to stay in the car rather than deal with pets or other people’s children. Where do we draw the line?
Stephen, Emily, Heidi, and Samantha Blank: Those bathrooms are mighty small spaces, most adults can hardly fit in there. There is no way it would stifle Lucy’s screams. On a plane, we’re all in this together.
Julie, aka calyssasmommy: Yeah, it also answers the question, “What on earth could that sweet, little Lucy do that would be that upsetting?”
mum2brady: Hopefully! It does seem she acts out while with me, more than while with her daddy.
Judith: Some of Lucy’s friends have little business cards that tell about their disability and direct people to their blog or a website to learn more.
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November 16th, 2009 at 2:08 pm
I love this post. I have sensory kids (four of them) and one with autism. I never know if the friendly stranger is going to help or drive the screaming up a notch, but what a relief when SOMETHING works, right? We haven’t flown in a while, after our last disastrous flight that loaded us on the plane and then made us sit and wait for an hour in a HOT plane with nothing to eat or drink. Oh the screaming and seat kicking! LOL!
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November 16th, 2009 at 2:55 pm
thanks for sharing REAL LIFE w/ us rachel. you’re the best kiddo!
love you bunches, allie, mallie and quincie. 
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November 16th, 2009 at 3:16 pm
I am posting this to my FB – awesome! Thanks for sharing. I can totally feel you desiring that hole in the bottom of the plane – but you all made it home.
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November 16th, 2009 at 3:40 pm
All I could think about when I was reading this was one of those “Worst Case Scenario” books I looked at in a bookstore once. It was “Worst Case Scenario Survival Handbook: Parenting.” I didn’t end up buying it, but I remember reading the section (first one!) called “How to Deal with a Screaming Baby on an Airplane.” And step one was, “Make highly visible efforts to quiet your child.” Whether or not they worked didn’t seem important. The important part was that everyone else on the plane saw that you were at least TRYING. This was supposed to keep them from hating you. It is true. If I’m on an airplane, and there’s a screaming child and I see the parents trying to quiet the child, I mostly feel bad for them. I’ve also seen parents do absolutely nothing, and it does piss me off.
I’m not saying that you should try to quiet Lucy. I believe you if you say that your trying to quiet her only makes it worse. I guess it depends on what is important to you. If you want to “look good” to the other passengers, you might consider putting on a show for them. But you already put on lots of shows for people, so you might not care about doing it on airplanes too!
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November 16th, 2009 at 4:26 pm
Rachel:
Have you tried reading “The Out of Sync Child”? It’s about kids with sensory integration dysfunction or sensory processing disorder. I think it’s somewhat common along with CP. My son is a micropreemie with dysarthria and very mild CP in his trunk and extremities. It talks a lot about all the things that can go haywire in a brain with damaged neural pathways, such as CP, and explains a lot about behaviors and needs in children that don’t otherwise make sense. There is also a second book called “The Out of Sync Child Has Fun” that talks about some activities to help meet and/or control these needs. I’m not sure how wheelchair-friendly the latter book is, but it might be something to check out. By the way, your show has been a lifesaver for us. Thanks for what you do for families of hearing children who have speech issues. It is huge!
–Kara
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November 16th, 2009 at 4:30 pm
I find loading them up on lots of leafy green vegetables, green smoothies and raw nutrient dense foods can help calm children’s behaviors and getting them off of all sugar products. Sugar tears down the immune system and destroys any of there natural senses. Children are developing and need raw super nutrients not foods that are dead and destroying there immune system. Read Green for Life by Victoria Boutenko or go to www.rawfamily.com
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November 16th, 2009 at 4:38 pm
I am an engineer, I must fix things. It is in my blood, it gets me into a lot of trouble at times. I am not sure that I would be able to just sit there and let her scream, even if I knew that all my actions would be futile. I give you credit for being able to just let it go.
Let’s talk about the angel in disguise who came by to talk to Lucy. She could have sent Lucy into a complete tail spin, but didn’t. Why? Not sure. I am not sure that I would have let her talk to her like that, the protector in me probably would have had some creative words for her.
Maybe this can be your leverage now, a simple reminder what happened last time she threw a fit.
I think we all have a little Lucy in us, where something sets us off that shouldn’t and we act completely irrational. Lucy has fought all her life and maybe this is her way at fighting those feelings, feelings that we cannot understand.
Thanks for sharing.
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November 16th, 2009 at 5:11 pm
Rachel,
Thanks for posting this story…as awful as this sounds, its so nice to know I am not alone with a screaming child …I have 7 children, the youngest two are twin boys, one of them Keegan, is profoundly deaf…The screaming is out of control… The boys just turn 5, but the past 3 years have been hell for us.. The event that stands out the most for me is when the twins were 3 … (I had just found out that Keegan was deaf,)anyways, I decided to take the boys to the mall to get out of the house and walk around.. KEEGAN STARTED screaming…WHY??? NO CLUE…he just starts and nobody knows why!!!…Happends all the time..well this day, a lady that was walking by said, “How old are your twins? I said 3″ she said does he scream like that all the time? I said “well to be honest with you, YES but we are not sure why he does it!!!” (at this time he did have hearing aides on) …She continue to ask, “Have you taken him to the doctors for it? I said “Yes, he is deaf so we are not sure if that has something to do with it!!” She started to walk away and looked back and said…”I THINK YOU NEED TO FIND A NEW DOCTOR! ….Rachel..I wanted to RUN, Run out of the first door I could find… Yes I was heartbroken but I also was beside myself..I have to be honest, It has made it very hard for me now, as the past two years, I try not to take the boys out in public…My older kids play sports but because of the screaming, I miss out on so much… We did try to take them out to dinner with all the other kids not to long ago and sure enough keegan screamed like crazy again… I was red all over..could feel my hair standing up…It was bad enough to walk into AppleBees with EVERYONE starring at us (people tend to starr I think in aww that there are 7 kids in tow) but then to have one SCREAMING like a mad man, doesnt help matters…SO I so know exactly what you went through….I wish someone would say something to Keegan as they did to Lucy …put a little fear in him….But not make me feel as if I am doing something wrong…Proud of the way you handled this with Lucy and the lady on the plane..YOUR AMAZING!
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November 16th, 2009 at 5:20 pm
Oh, I can’t tell you the number of times I’ve cried in another room (in the back seat of the car) or while trying “anything” that might distract or change the moment just so Cole will stop screaming at me for hours. And HOW do they have the energy to scream for hours on end?
So…I guess this means they don’t “grow out of it”? Crap!
And, if I could just figure out what in the world sets Cole off, maybe (just maybe) I could avoid it. But, my 8 yr old Shane is FAR from calm/quiet and Cole is ok with this but we go to his baseball games and the excited mother screaming/cheering for her son will totally freak him out with me trying to calm him (and still cheer for my other child). What can I do? Say to every parent, “Excuse me but could you not yell because it ‘might’ send my baby into a screaming fit?”. I guess probably not.
I guess we just deal the best we can with each situation as they come along…especially if we have no contol over it. Like Lucy, Cole loves me and feels sorry later. I’ve done the same with the headphones.
If you happen to find a solution or are told the big secret of how to change this, please promise you will post, yell or personally give me I call, I sure would appreciate it!
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November 16th, 2009 at 5:34 pm
Too funny! My kids always react better to strangers too, it’s nervewracking! I’m told it’s a sign of a strong parent/child bond when they act worse for their parents because they know no matter what you will always love and accept them for who they are!
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November 16th, 2009 at 5:48 pm
Hi Rachel, If you ARE looking for helpful suggestions (thought you’d probably had it up to the eyeballs with suggestions!) there is a GREAT organisation in USA, Canada and now in a number of other countries called HANDLE. They have a website at handle.org The HANDLE Institute International enhance peoples capabilities through a “holistic approach to neuro-development and learning efficiency”(handle). I have seen video footage of the amazing positive impact simple (but very strategic and reasoned) movements can have. The handle practitioner teaches the parents how to do the simple movements with their child and so you’re not having to make trips out for lots of appointments. They deal with a huge spectrum of brain function, even with people who’ve got profound aquired brain injuries and are able to have a huge impact on improving their ability to function more. Cerebral palsy is listed as something they can help with.
Judith Bloomstone wrote a book called “The Fabric of Autism” which is useful. She founded HANDLE based on her own experiences of disabilities, sensitivities etc. and extensive research to back up what she herself found helpful.
Our eldest has sensory issues and we’ve really struggled with meltdowns and behaviour that no parenting book explains. HANDLE is the only place that’s really helped things make sense for us. We understand much more now about what he’s experiencing and the handle exercises make a big difference. In children it can bring about permanent improvement (or healing) so that the exercises become only needed in times of added stress etc. We’ve struggled with lots of “Am I being too hard on him? or Can he actually help it?” “Am I not expecting enough from him, or am i expecting too much? What is the ‘walk’ for this little child? No book seems to guide me … HANDLE really has helped us work through these issues.
I hope you are able to make some use of this. I hope there are HANDLE people near you, or that you make the trip to get help with them. I cannot recommend them highly enough. Their approach seems to be so much more complete and hope-filled and respectful of the child than any other I’ve encountered.
May God guide you faithfully as you travel this road. xx
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November 16th, 2009 at 5:51 pm
I have a 3 year old who is in that stage and decided to scream while we were checking in at the airport and all the way to the gate. My kids took him up in the elevator while we took the escalator to the security line. Apparently an old lady got in the elevator with them and finally looked at him and told him, “Shut up right now!!!”
At least your person was a little gentler!
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November 16th, 2009 at 7:03 pm
I *always* appreciate it when people speak directly to my child about her behavior.
For us, it has been very helpful working with a neuro-developmental pediatrician rather than “just” the developmental pediatrician we had been seeing. We see Dr Conlon in Bethesda MD. He used to work at Children’s Hospital in Wash DC but is now in private practice. His contact information is hard to find (non compete agreement complication?) but he can be contacted at the Washington Headache Center (www.washingtonheadaches.com/) His office might be able to suggest someone closer to your home.
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November 16th, 2009 at 7:37 pm
Oh, my goodness. Like Dadgineer, I’m not sure I could’ve handled someone talking ot my child like that. But then again, my child doesn’t have the cognitive ability (yet) to understand like Lucy clearly did.
Someone recommended “The Out of Sync Child has Fun”…it does have activities in there for every physical ability level so it might be helpful. Or at least interesting.
I can so relate to your experience as we’ve had our own versions of this with nik just flipping out for no discernable reason. His manifestations usually also involve him punching himself either in the face or the leg, or kicking himself in the shin with the opposite foot. For him the trigger seems to be either some sort of significant pain which he is unable to tell us about or a very hgh level of frustration. We’re looking into some medications for ADHD (which he has recently been diagnosed with) to see if they can help calm him down enough that we can try to teach him different coping mechanisms.
Good luck with the screamer. Erm, I mean, Lucy!
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November 16th, 2009 at 10:31 pm
Rachel,
I read this as I was letting my 11 month old cry it out in his crib. I walked away from your story to move his poor sister to her other brother’s room. The crying is hard to deal with.
It sounds like this stanger-angel was pretty tactful (trying to be funny but stern) and it seemed to calm Lucy out of it (shock her out of it… like when you just can’t stop crying and you forget why you started…). Glad it worked.
Other people have talked about sensory processing disorders. Lucy must see an OT. Have they ever done any sensry integration techniques with her (fluid in the ear canal stuff, auditory training stuff… is she restricted from stuff because of her shunt-does she still have a shunt?). I did a parent training at Henry’s OT today, and she was all about the vestibular and rotary movement (affecting the fluuid, and it’s effect on the body). She wants us to do a home program with that daily. Has an OT ever though Lucy was a candidate for that?
I have had students with CP have startle reflexes, but they never resulted in crying, and certainly not uncontrollably crying (sometimes a laughter, but more of a burst).
Now, this side of Lucy, I can understand the suspension story a little better. Oh,Lucy!
Thanks for sharing, Rachel.
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November 16th, 2009 at 10:34 pm
Excellent use of the word turd. Don’t tell my wife I said that.
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November 16th, 2009 at 10:57 pm
Oh my, what a long flight you had — but I was laughing so hard at the woman’s response afterwards about going to hell. Here she was feeling so bad about treating Lucy differently when really you were grateful she treated her like any other child. What a brilliant lesson – for everyone. Thank you for sharing this!
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November 17th, 2009 at 12:49 am
Rachel,
I was born hearing and lost my hearing after having spinal menegitis. Losing my hearing was the hardest thing for me to deal with. Not only that but subconciously….it was hard for me to deal with my disablity. I too remember screaming a lot when I was little. When reading your blog, listening to what Lucy said. I believe the answer lies there.
“I HATE YOU! YOU NEVER HELP ME! YOU’RE STUPID! STUPID! YOU’RE A TERRIBLE MOMMY! YOU NEVER LISTEN TO ME! I HATE Y-OOOOOOOOU!
In this world today we often try to over analyze things, hoping to find some scientific reason for such occurence. Perhaps there is one and if there is one I hope someone finds that reason.
“I HATE YOU! YOU NEVER HELP ME! YOU’RE STUPID! STUPID! YOU’RE A TERRIBLE MOMMY! YOU NEVER LISTEN TO ME! I HATE Y-OOOOOOOOU!
I don’t know what the best termology to use for what i’m trying to convey. I believe it’s a little bit of sensory deprivation, sensory overload, depression, denial, even grieving process of facing your disability. It’s wonderful having a supportive family that not only supports your disability but also is a strong advocate for it as well. One also has to understand even though one has grown up with the disabiltity and is used to it. They are still going through a “loss”, just like you would when you lose someone you love. You experience things that reminds you of that loved one and it brings back memories, good or bad. Sometimes you cry, sometimes you smile, sometimes you fall, sometimes you stand strong. Every hero has their weakness, their secrets as well as moments where they take off their costume.
“I HATE YOU! YOU NEVER HELP ME! YOU’RE STUPID! STUPID! YOU’RE A TERRIBLE MOMMY! YOU NEVER LISTEN TO ME! I HATE Y-OOOOOOOOU!
We did the first problem together. Lucy was doing the math, I was writing in her answers… and then…
“I HATE YOU! YOU NEVER HELP ME! YOU’RE STUPID! STUPID! YOU’RE A TERRIBLE MOMMY! YOU NEVER LISTEN TO ME! I HATE Y-OOOOOOOOU!
This is the way I see it. Please know this is not a BAD THING nor is meant for one to judge Rachel or Lucy. This may bring some understanding to different points of view or possiblities to the million dollar question. Just simply my non-scientific observation from a disabled person’s point of view. Scenario: In a PUBLIC place HELPING with math problems WRITING for Statement: “I HATE YOU! YOU NEVER HELP ME! YOU’RE STUPID! STUPID! YOU’RE A TERRIBLE MOMMY! YOU NEVER LISTEN TO ME! I HATE Y-OOOOOOOOU! Other quotes that come to mind: What you say about others is how you see yourself. Now … if everything I have said made you think.. that was my intention from the beginning of this letter. One of my favorite quotes, “You are only frustrated because you do not yet understand.” (I work with disabled individuals and love autistic people, bi-polars as well as others with behavior disorders) From my experience as a disabled individual as well as through work helping other disabled individuals. I STRONGLY believe that MOST behaviors occur from the inability to communicate, to express yourself, to understand different factors. I truly believe she might have had a moment that occured out of the blue. Where it all just subconciously crept upon her and overwhelmed her as well.
Being reminded of her disablity, being in a public place, unable to write her answers, having to depend on others such as Mom (which would be why she tends to do it more around you than others)
We did the first problem together. Lucy was doing the math, I was writing in her answers… and then…
“I HATE MY DISABLITY! I ALWAYS NEED HELP! I’M STUPID! MY DISABLITY IS STUPID! I’M A TERRIBLE PERSON! MY DISABLITIY NEVER GOES AWAY! I HATE THIS!
“I LOVE YOU! YOU ALWAYS HELP ME! YOU’RE SWEET! DEPENDABLE! YOU’RE A WONDERFUL MOMMY! YOU ALWAYS LISTEN TO ME! I LOVE Y-OOOOOOOOU!
Those are two different versions of what I believe she is saying. I believe she meant it both ways. I am not saying she’s depressed but if you are familiar with depression. You would know that one often dwells on a certain subject and gets lost in it. Anger towards one’s disablity is something that is VERY HARD to get over with. Even with the support of many people.
It’s late and I’m having a hard time staying awake and staying on track.
This was meant for you all to read and think. It’s hard to walk a mile in someone’s shoes when you are “normal”. I may not be in Lucy’s shoes. I only have lost my hearing. I know I’d probably go crazy if I had other issues as well. I cannot imagine being confined to a wheelchair.
I have to say and there are no words that would truly express how I feel. Rachel, after reading all that you do for your girls. I know why God blessed you with your two daughters. I know that sometimes it does not feel like a blessing especially when times are hard. God does not give us more than we can handle. He must think we all are superheroes. Rachel, you are one hell of a woman! I ADMIRE you for the advocate you are for your girls as well as everyone else. You have touched so many lives, not only you but your girls as well as your husband. Just know if you ever need to take off your costume and someone to talk to or even listen. I’m here for you. (seriously)
Thank you for your strength and inspiration. Not only for ‘normal’ people with disabled children, but also for ‘disabled’ people with ‘normal’ children. *grin* I hope I can be the kind of mother you are for my own children.
*hugs*
Cat
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November 17th, 2009 at 6:01 am
I can relate to that feeling of being out in a crowded public place and having to try to deal with a screaming and crying outburst from my child, and getting the looks, and imagining what everyone else is thinking, feeling like I don’t know how do deal with it in the way that I should, and feeling like a bad mother! It seems to happen every week or two!
Sorry you had to go through that, Rachel.
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November 17th, 2009 at 7:32 am
Have you read “The Elephant in the Playroom”? I’m currently reading it now and it makes me understand more what parents of special needs kids have to deal with. I have a 1.5 year old with a genetic disorder, but it’s too soon to know how she’ll be cognitively and even behaviorally. We have seen signs that she might have sensory issues, but how far they will progress we won’t know until she’s older. There is a chapter in the book that describes parents that have taken the road of medicating their child (not that I’m suggesting that you do that, but you did mention it as a possible option).
Cindy
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November 17th, 2009 at 9:32 am
Wendy: I guess if you consider that many grownups don’t even like being marched into a metal bullet and rocketing through the sky, it might be somewhat disconcerting for kids, especially sensitive ones. I thought Luce was going to lose it on the way to Cancun. We had pulled away from the jetway and the jetway scratched the plane. We had to get off and wait 2 hours for a new plane and crew. Even I wanted to scream.
allie b: Thanks Allie. I don’t feel like “the best” right now, not at all.
hsofia: Awesome? Hmm. I’ll take it.
Sonja: Oh great! I did it ALL wrong! LOL – If only I had known. Your comment about putting on shows… brilliant! Thanks for making me laugh. I might actually try that next time.
Kara Price: Nope I haven’t read “The Out of Sync Child” but I will go get it in the morning. There is a book store within walking distance of the hotel.
Tonya: There was a large chocolate sucker involved just before the San Diego “Shhhhushing.” You might have something there.
Steve aka Dadgineer: You are right. I have been set off by ridiculous things myself, not often, but still. Once someone said, “Tortilla Pie” and I completely lost it! True story, I’ll have to tell you over deep dish Chicago pizza next time. I love the engineer/fix it guy in you. It never crossed my mind to be angry though with the woman, I knew it would take an outside force. I’m going to have to think on that one a bit. Maybe it’s because everything the woman said was true, Lucy was bothering everyone and Lucy could choose to stop the behavior.
Kara Hendrick: Wow! I realized that I had stopped taking Lucy everywhere too. There was NO way I would take her to the grocery store or shopping for clothes. Shoes especially! It seems like if something doesn’t work perfectly for her the first time, she loses it. Like, if I’m helping her try on a pair of shoes and they don’t fit… FORGET IT! It’s over. I can’t even try another size or another shoe. So I end up feeling like if I don’t do everything right the first time, I am at fault. But really… who can do EVERYTHING right the first time? Not me, that’s for sure.
Leanna: Maybe we should get all of the screamers together for a play date! ROFL Can you imagine? Let’s just put them in a room and we will go get ice cream. Let them see how it feels.
Lucy can scream until she loses her voice. The crazy thing is, it seems to be a choice. I swear she is choosing to scream.
As far as figuring out what set them off… I’ve been looking too, for NINE years, I am looking because I have believed that if I can just answer that million dollar question, then I can get this behavior will stop.
I can also relate about people cheering. Aaron can’t even watch sports on TV without sending Lucy through the roof. We have started bringing big noise canceling headphones and her iPod EVERYWHERE. We just plug her in.
(I told you Cole had some Lucy in him, I could see it even before I met him… sorry;)
Cammie Heflin: I will take that as a compliment too. I do tell her, “Lucy I love you no matter what, but right now I do not like this behavior at all.”
Sally Oster: I had never heard of that. I will look into it too!
Heather: Now what age is it where we can just say exactly what’s on our mind? Did it work? Did he stop screaming?
Melanie: I will see if we’ve got a doc like that nearby.
Niksmom: That would be rough to have your child take it out on himself. Lucy is working with the school psychologist this year on coping skills and behavior management.
JenML: Lucy had OT and PT for many years, since she was nine months old, and you know how it went? Guess.
She screamed the entire hour of OT and the entire hour of PT. I would have to leave the room. The therapists would have to leave the room. Other children receiving therapy would have to leave the room. She acted like the simplest things were torture. We all endured it week after week, year after year and finally I asked “Why? Why exactly were we doing this?” Could it really be helping Lucy when she was spending all of her energy resisting it entirely? Every once in a while she’d have a decent session, but overall it was just too exhausting for the entire team.
Muncher: Thank you. I think my blog went from a G rating to PG today with the use of “Hell” and “turd.”
Don’t worry, I’ll never tell.
Missy: Yeah, I could tell that she felt pretty bad about telling-off the little disabled kid.
Cat: Eyes full of tears here. Thank you.
Jackile: I have the feeling that none of us, here at least, are bad parents. Look how hard we try:)
Cindy: Nope, I had not heard of that one either. Off to the bookstore this morning.
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November 17th, 2009 at 10:29 am
Been there done that–daughter had a double ear infection we didn’t know about until after we landed–poor kid–poor us–poor passengers.
In the spirit of idea-sharing, a friend of ours worked with a neuropsychologist to help with some of her daughter’s more unique behaviors. The treatment wasn’t as successful as they had hoped for, but the brain scan alone was like having an x-ray of her behavior and explained a lot. Here’s the web site of a clinic near us, but I’m sure there are resources near you if you are interested.
www.nhahealth.com/about.htm
I think the best part of your blog is that you share the good and the “less easy” of special needs, which I know I appreciate!
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November 17th, 2009 at 10:40 am
Hi Rachel,
Although your daughters seem to have other physicaly issues, my son has Sensory Processing Disorder (how I ended up on your blog), among other things like High Functioning Autism, and Mood Disorder…
The point is that your story is exactly like mine. Although I am moved by how comfortable you are and open with strangers. I immediately get all “momma bear” with people and am angry with them for attempting to parent my kid.
I am going to rethink that on our next flight…which we don’t do often for this exact reason. LOL
I am happy to chat with you about Sensory things anytime–as that seems to be the only thing I have to offer you and your darling girls!
I really enjoyed your writing, thank you.
Hartley
hartleysboys.blogspot.com
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November 17th, 2009 at 11:51 am
I am curious. I am sure you have tried this before, but what does she say when you asked her why she was upset? If you asked her when she was in a good mood, “remember on the plane, when you got really upset? What made you upset? Why were you crying?” Does she know? Can she put it into words?
Here is a strange thought that just popped into my head. I hate getting IV’s, it is a phobia. I once had to get IV’s one in each hand. It sent me off the deep end, I was shaking, sweating, it felt like my body was vibrating all over. I understood that it was all in my head but I couldn’t stop. I was a 33 yr old man, about ready to cry because of iv’s. The the doctor walked in and it all stopped, like a switch was flipped. It was very strange. That woman maybe was her switch, it is like a mental distraction that pulls her out. It may not have been what she said, but that she said something.
Like I said, I have to fix. Not sure if that helps, just my head working away.
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November 17th, 2009 at 3:39 pm
I think that the hardest part of parenting a kid with special needs is how we feel the public is viewing us. When we have a child who is “old enough to know better” and to the casual observer appears to be a perfectly normal and healthy child, and they are screaming, hitting, thrashing, whatever in public, we feel like we ought to be able to get it under control. We’ve never flown with our SID kid, but I can imagine how frustrating it would be to be trapped in the situation. At least when my kid loses it in W*mart I can leave my shopping behind, drag her to the car, and go home. I feel for you! And you know, I was glad to hear that you dropped your OT and PT at some point, we did the same, and no one could understand why. My daughter also has selective mutism and extreme anxiety disorder. We would go to therapy and she would withdraw completely or scream the entire time. I’d finally felt like I had learned everything I could from the therapist and we would try to apply the techniques at home, but it was such a waste of time and money to keep going to weekly appointments. Anyway, all that to say, I don’t really have any advice, but I sure do sympathize. And I am very interested in all the advice and ideas folks are sharing.
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November 17th, 2009 at 10:12 pm
Diane: In some ways, just knowing how many parents of screaming children are actually out there… makes me feel a little better. Thanks for the link.
Hartley Steiner: Also interesting how many people just don’t travel with their kids. That never crossed my mind:)
Steve aka Dadgineer: I have expressed to her that I am at a loss when that happens and I have asked her what it is she would like me to do when she behaves that way. Want to know what she says? … “Just love me mom. Just love me.” -Yeah, tear my heart out and stomp on it little one, go right ahead.
Gretchen: It’s true. We just trying to be normal! And yeah, I felt guilty about quitting OT and PT, but really I think everyone involved was relieved.
I hope others are able to find resources and support here, like I do.
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November 18th, 2009 at 12:45 am
Hey Rachel – I met you at the N VA Buddy Walk (with all the cold rain!) with my daughter Lilly, who is 3. I totally understand the “just ignore it even though everyone is looking” thing – Lilly isn’t a screamer but she’s been known to throw herself down in public when she’s upset (the “drop and flop”). She actually slides like a baseball player – headfirst on her tummy – and then lies there. If I try to pick her up, she absolutely resist, so I have to either convince her or wait it out. Love being at the grocery store when she does this and she lies in the middle of the aisle and noone can push their cart around her and they just stare, but she refuses to get up! Apparently she doesn’t ever do this at daycare; this behavior is just for mommy. Anyways I don’t have any big insights or advice but just wanted to say you’re not alone. Cheers, Cathleen
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November 18th, 2009 at 8:19 am
I so appreciate your honesty here.
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November 18th, 2009 at 8:46 am
I need to know what headphones you use that would drowned out that sound! It never crossed my mind until reading this that the hour of screaming that sometimes follows a late nap for Mia (mosaic Down syndrome) could be sensory related – but this is giving me pause to think about that possibility.
What is Leah’s response to seeing her sister act this way? In our house, when Mia is throwing a fit her older three siblings seem to be able to mostly ignore it, and occasionally they are the ones to break her out of her ‘funk’ as we sometimes call it.
You are meeting every possible need and then some, and I don’t know what other training there is for your continued journey. Please keep posting your blogs, and thank you for the comments to the comments.
An aside, last night at bath time, Mia was getting the bubbles from the bubble bath on her palms and trying to make palm prints on the edge of the tub while doing her best to sing ‘Tiny Hands’. Beautiful songs and heartfelt lyrics. I need to get you a video so you can see how you’ve touched us with your many gifts!
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November 18th, 2009 at 3:33 pm
Thank you for posting this and your tales about your two daugthers.
Kivrin has a lot of sensory issues and today and the last couple of days, she’s just cried to school or back and I couldnt understood why or what had upset her- and I was silently having a pity party in the driver seat.
She’s dropped off the sign language completely now that her speech is better but still hard to understand. She breaks down and than in seconds is fine and laughing…
its so difficult at times but then I read blogs like yours and just grin cause I’m not alone with having a kid thats smart and wonderful but at times is a crying wailing screaming child that you can not control.
Thanks again!
Laters
Kristen
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November 18th, 2009 at 8:53 pm
My two-year-old loves Barney, Elmo, and Winnie-the-Pooh. One of the things that has sometimes worked when he gets into tantrum mode is to start singing. We usually start with Winnie-the-Pooh, then Elmo’s Song, then I Love You… Once he stops crying, we can go into whatever we want to sing: a mix of Signing Time, church songs, more children’s music, etc.
I don’t know if that is of any use whatsoever for Lucy’s case, I just thought I would mention it.
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November 19th, 2009 at 4:29 pm
What I love most about your blog is how you take us into your daily life, it gets me thinking about things I wouldn’t have otherwise. I don’t have a child with disabilities. I need someone like you to walk me through situations like this, I get it a little more each time you do.
I do have a son who had sensory issues as a baby. The toilet would flush downstairs and he would cry, or daddy would shave, or the vacuum cleaner, etc., all a disaster. He was colicky and would cry for 2-3 hours at a time until he was exhausted (not to mention us). He developed eczema. I focused on diet and I’m happy to say that most of these issues have cleared up at this point, he’s 2 now. But I sure did learn a lot from the experience – just the shear emotion of it.
Now here’s where I found your response interesting because I go in another direction with it when this happens with my son, mother bear mode. I’m not sure how I would have handled that woman’s response. It’s easy for me to feel that most people just didn’t get it, and if they had to listen to my son cry for awhile – oh well – I listened to it every day and I survived. Maybe that’s not the best attitude, but that’s how I feel, my concern was first and foremost for my family and to heck with everyone else. I was angry with relatives who just didn’t get it and weren’t supportive and that feeling probably extended to everyone else too.
So, now that you know that about me, good or bad, here’s my perspective. First I think that Lucy is desperately trying to communicate something – not what she is saying – but something important. I loved Cat’s post. Listen to Lucy. I know you do but I mean right in the middle of it. Hold her hand and listen. When I think of my moments when I’m out of control (I’m 37 now), I just want the other person to listen. If they don’t I feel angry, helpless, scared, frustrated, lonely, panicky, and depressed, and even more desperate for them to hear me and respond, even negatively.
I’m going to think more about your reaction to the woman’s response. I think I need to learn to be a little more open and trusting, and not be so protective of my son that he doesn’t miss opportunities to learn from others who may be different from myself.
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November 19th, 2009 at 10:34 pm
I don’t know if it would work with a sensory issue, but you should try AFA algae. It’s a blue-green algae that has 64 vitamins, minerals and amino acids and contains phenyethylamine (PEA) that has been shown to help with memory and concentration. It’s great for kids with ADD and ADHD and can even help with depression. It grows in Klamath Lake. I know you’ve seen the lake since you were in Klamath Falls last Halloween (I took my then 13-month old to see you–she was dressed as a little horse). Check out the website, www.e3live.com. The E3Live with BrainON is the standard algae with more of the PEA added. It’s awesome!
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November 21st, 2009 at 1:08 pm
I am linking you to my blog post today. I hope you don’t mind. Just know I love you and see you more than any other human on TV!!
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November 21st, 2009 at 6:32 pm
Rachel,
Carol Stock Kranowitz who wrote the The Out-Of-Sync Child is an international expert on sensory processing disorders, so common in children with autism, cerebral palsy, Asperger’s syndrome and premature birth, has been invited to come from Maryland and present at the parent conference we invited you to come to in Logan, Utah in June. I hope you can take her class and hear her speak. I know many parents and professionals in Utah who use her strategies to help these kids. Many of them are highly sensitive to sound or touch, have central nervous system problems that we are only beginning to understand, but there are therapies and hope.
Here is a website with a video about a girl in Canada who finally found her “voice” and showed the person she is inside. We know these children are bright and wonderful.
There are many levels and types of sensory processing problems. Only Lucy knows what it is like to be Lucy and feel what she feels. I have two children and two grandchildren with sensory processing problems.
parentingspecialneeds.org/article&article=180
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November 21st, 2009 at 10:46 pm
Hi Rachel,
Another trick to tuck up your sleeve: have you tried whispering? The child has to stop screaming in order to hear what you are whispering. Some wonderful responses to your post. I enjoyed reading them.
I’m a mom of 3 healthy, reasonably bright, energetic children and I am humbled whenever I read your blog. You bring such energy and compassion to the challenges of parenting that I am consistently impressed. Thank you for being such a clear writer and for choosing to share so much of your life.
Jen
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November 22nd, 2009 at 1:31 pm
Hi Rachel:) I’ve been watching your showfpr a long time with my two year old. Actually I’m embarrasses to say how young he was, because I don’t really beleive in letting infants watch tv, but I really started watching it for me. I really really want to learn to sign, not just be someone who says they wish they could. I really really suck at retaining language though, but I’ve found it easier to learn with kids stuff. My son signs cicles around me from watching your show, but I love having him teach me things.
anyways, that was a major sidetrack. I have loved connecting with you and your family with your show, as people who teach and interact with me and my child, (I actually have to rewind so that he can kiss you guys goodbye before I’m permitted to turn off the tube, I’m so not in charge anymore.) but I really appriciate that I found this blog, and am able to connect with you as another mother who occassionally wants to throttle her children!:) Yay, Rachel’s human too! Thank you so much for sharing, I will be stalking this blog from now on.:)
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November 23rd, 2009 at 1:51 pm
Thank you for as usual sharing experiences that resonate with me. Make-up work on the plane, surgeries postponed, interactions (some very strange, some quite helpful) with strangers…My family just returned from a week in St. John, USVI. We usually treat ourselves after difficult experiences but this trip was a preemptive strike before my son with spina bifida has another surgery. On the last leg of this trip my oldest was doing homework and I was signing across the isle to my other son, “water or juice to drink?”
All of my kids signed as babies, but I didn’t discover your DVDs until my daughter, who is five and has Down syndrome, was learning to sign. Just recently found your blog. I look forward to your posts as there is always something in them that reflects my family’s experiences.
I wanted to share with you something that makes our travels much easier. We use a Hippocampe beach wheelchair for my son and it allows us to reach places that would otherwise be tough. One of our favorite beaches with some of the best snorkeling on the island is at the bottom of a steep rocky 1/4 mile hike. The hippocampe makes it possible to get there and back.
Thank you again for sharing your experiences.
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November 23rd, 2009 at 3:39 pm
Cathleen: “the drop and flop”
How creative!
Julana: We’re only as sick as we are secret. So, I let it all hang out.
Anita: The headphones are called skull candy. Leah has it easy, she can turn her ear off and she does just that.
Kristen: Ah the front seat pity party! I’m all too familiar with it. Just this morning Lucy was screaming on the bus. The bus driver came to our door and said, “she’s crying really hard. She doesn’t want to go to school.” I smiled and said, “Show me a kid who wants to go to school.” I’m sure he thinks I am a terrible mom. I sent Aaron out to talk to her, because I wouldn’t have been any help. Gotta say it’s nice to have a partner though, one of us can typically hold it together when the other can’t.
Kim: Mostly she just screams louder, but thanks for the idea. Turns out I’m not the only one with a screamer.
Alison: I think we all have blind spots, and I am always on the prowl to discover my own. I saw that I had become defensive too when Lucy was a baby, everyone stared at us, the wanted info about our signing or about Lucy and I was so tapped out. There were times I would come home and say to Aaron, “Geez! You’d think it’s my job to educate the whole world!!”
(Funny huh?) Sometimes when we step into the things we resist, we find something we would never have imagined otherwise.
Becky: Thanks, I’d never heard of it.
Sandi: Link away! I don’t mind at all. You see me more than any other human on TV? LOL
Claudia: I am more than half-way through “The Out of Sync Child” and I am a little frustrated. Sure I check a box here or there, but nothing is screaming “Lucy” (no pun intended) to me. I’ll finish it and let you all know what I think, but the biggest problem I am having is that if Occupation Therapy is the answer, I am HOSED! She has had OT since she was an infant and screamed through that as well. Every time, an hour of non-stop screaming… for years and years. I think her OT and PT dreaded seeing our names on the schedule.
Jennifer: The bummer is, whispering might work if she cared what I was saying. I am unable to communicate with her when she loses it. There is no stopping her. That’s why I just put on my music and ignored her. I can’t seem to do a thing about it. I have no impact.
Cristine: I would just like to clearly state that I have never throttled my children and do not encourage others to throttle theirs. Though I can recognize the urge and appreciate the camaraderie;)
Melissa: Do you own that wheelchair? Do you travel with it? Are you taking 2 wheelchairs with you? I have seen a few beach wheelchairs at various resorts, but haven’t had the chance to have Lucy try it out. I can just see out insurance denying that… “You live in Utah!! Which beaches were you going to take her to exactly?
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November 23rd, 2009 at 8:42 pm
Rachel: We did purchase this chair and travel with it in addition to the regular chair. Airlines check it with no extra charge. It breaks down into a travel bag but it is still large and heavy. I am going to look for a hockey goalie bag with wheels for next time. The company sent me one to try before we purchased. It is about $2500 and I didn’t even try to get it through insurance, just used FSA money. Apparently many beaches in Europe have Hippocampes for people to borrow but I haven’t ever seen one in the US. We have bought plenty of equipment over the years that ended being a waste of money but this one was a worthwhile purchase. There are photos on the Hippocampe website, but I can also send you a photo of my son in his.
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November 24th, 2009 at 3:19 pm
Hi Rachel, I saw you write Lucy has an OT and that hasn’t made huge inroads for Lucy. The HANDLE stuff I spoke of are unique in that they address brain function and issues at their root/base level. OTs and other professionals address these issues at about midlevel. Doing stuff at midlevel never really gets to the heart of the issues to address them, but can help with functioning more through a bandaid or training way.
HANDLE work to strengthen the person’s underlying systems at their very root. All our other systems are built on top of that. Unless the base is stronger there will always be instability and ‘risk’ for the other systems. I wish I could draw a picture on here as I’m having trouble explaining it with words so I’m not sure if you really ‘get the picture’.
I encourage you to have a look at some HANDLE stuff www.handle.org or get the book “The Fabric of Autism” (which isn’t actually about autism per se, but is much more about neurological development, disfunction and the amazing effect HANDLE can have on such issues). I found it a heavy read. You may prefer to go on the website where you can read stories about the impact it’s had for people. You will find it very encouraging I expect: children who virtually couldn’t talk, making leaps and bounds in speech, people who were unable to move, talk, communicate in any way for 20 years being able to sit up, transfer themselves to a wheel chair, feed themselves etc. children with uncontrolable behaviour becoming calmer and able to express what’s going on inside their little bodies. It is mindblowing stuff.
What are your main questions regarding Lucy? If you could wave a magic wand, what would you wish for?
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November 25th, 2009 at 10:28 am
Just a quick comment on the wheelchairs. Great Sand Dunes National Park in Colorado has these sand wheelchairs. I don’t have a child that needs one, but they looked neat. Maybe if you are in the area sometime, you could go there and try one out? www.nps.gov/grsa/planyourvisit/accessibility.htm.
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November 26th, 2009 at 1:14 pm
Just a story, no advice to give unfortunately. Also, I am just about as neurotypical as it comes, so it may not be particularly helpful.
When I was 5 years old, my father was away on a course in another city and my mom was doing the single parent thing for me and my sister. We had recently moved to a new city and gotten a new nanny and were in new schools. So there was some tension in our lives.
I remember one evening, my mother put us to bed at the same time as always. Something snapped, and I don’t know what. My sister started screaming. Nothing sensical, very much like what you described with Lucy. I started screaming as well, again, I can’t remember what was said but just the volume. My sister stopped screaming after a while, but I continued on. I’m not sure for how long I screamed, it certainly wasn’t the hours and hours you describe for Lucy.
Then clarity hit. I stopped screaming and hopped out of bed. I thumped down the hall to my mother’s room. I tapped on her shoulder and asked if I could have a hug goodnight.
“Is that ALL you wanted?”
She gave me a hug and I went to bed. The event wouldn’t even have become a memory if my nanny hadn’t given me a strange look the next day and asked me why I had made such a fuss the night before. (She had a room in the basement, so I must have been LOUD!)
Evaluating the event, I wasn’t particularly upset at the time, but I just got into a zone. The words didn’t matter, the subject didn’t matter. By the end, I think it was that I felt like stopping and needed an excuse (the hug) so that I could go to sleep. When I did stop, I didn’t feel particularly odd. When asked, I didn’t know why I had done it.
If the issue is more of a mental thing (by which I mean seeking a mental feeling of clarity through the screaming, which can be rather relaxing) then working on alternative methods of relaxation and mental calming such as meditation might be helpful, working on breathing and calming of the mind.
If the issue is stress that isn’t fully conscious (which was probably the case for me) then the issue would be to mitigate that stress. Meditation again comes to mind, but I remember hearing that writing in a journals about your day and feelings can help, or doing something physically tiring (punching a punching bag? squeezing a stress ball? dancing to music? … I don’t know what she would like doing) were things that I heard about for stress relief. But I’m not an expert there.
I guess my mom was just really lucky that I didn’t make it a habit!
Best of luck with everything. Your blog is really interesting to read.
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November 27th, 2009 at 5:32 pm
Rachel!!
Sensory integration dysfunction SUCKS doesn’t it?? My 9 yr old daughter has HUGE sensory issues PLUS “high functioning” autism (what part of the autism that is high functioning is eluding me right now).
I honestly CAN’T imagine traveling with her anywhere near the degree that you do w/ your daughter. Actually, I don’t even take her to the store!! And the fact that we used different dinner dishes for Thanksgiving Dinner put her into a mood.
Blessings to you! Breathe, Breathe…….this too shall pass.
Dont’ EVER forget your headphones and I promise if EVER get to go anywhere and I hear Lucy’s siren wail, I’ll come to your rescue!!
Gigi
(a mom (whose feet also dangle off of all chairs) to 11yr old Hayden, who has DS, profound bilateral hearing loss and is your #ONE fan, and mom to a 9yr old daughter who’s wonderfully talented and brilliant and who also melts down at the drop of the invisible hat)
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November 29th, 2009 at 12:02 am
Wow, thank you for sharing such difficult times in your life, and opening up comments too!! Very brave of you, and very refreshing. I love how you welcomed a stranger’s help, kudos for being open to that as well! I really feel for you, after reading this post. My feeling is that if Lucy can control herself (stop screaming and even display embarrassment) when confronted by a stranger, and can mostly control herself when Aaron is dealing with her, then she is capable of controlling herself with you too. There must be some way to make it clear that acting so disrespectfully toward you is not acceptable. If she is truly in some kind of neurological “rut” and can’t snap out of it (although she proved she can, with the stranger’s simple question and presence,) why not try suddenly misting her in the face with water? That would certainly be a surprise, and it wouldn’t hurt anything. If she hates water on her face as much as you say, she may be unwilling to repeat that behavior again. Of course you can reiterate that you love her, and that there are other ways to communicate her needs and feelings besides screaming and hating on you. I am sure all the “mama bears” out there will hate this suggestion, but if all conventional attempts have failed, why not think outside the box?
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December 1st, 2009 at 4:42 am
THANK YOU for posting this. Firstly, because I’ve been freaking out about flying now that another mother has once again been kicked off a plane for having a toddler who TALKS too loudly. www.msnbc.msn.com/id/33555007/ns/travel-news/ And people’s comments on that sort of thing are sooo hateful. All I mean is, ha ha, it sounds like you’ve got an even more dramatic child than I do! I’m sorry for you, but I’m going to feel a little bit better if my 2.5-year-old acts similarly. There really is nothing you can do to make a being with a will of his/her own “behave” short of violence, and I’m not going there.
Secondly, I just really like the idea that we should all be in this parenting thing together, like the woman who helped you by speaking to your daughter. Why, in the story I linked up there, didn’t someone else in the plane try to distract the boy? I think we don’t see our responsibility to other families, and I want to try to change that within my own life by doing what I can. If a child is having a meltdown, I want to be the friendly stranger who offers a distraction. That’s my goal, anyhow, so thank you for giving it to me!
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December 2nd, 2009 at 10:29 pm
Rachel,
I’m not even going to try to offer micro-psycology here….(more than likely not an actual term, if it is I stumbled on it by accident.
I love your blog and really enjoyed reading this post.
One thing you said really impressed me. When Lucy has a moment you will put her in her room and go to another room to cry. I have been in daycare for the past 9 1/2 years as well as being the mother of 3 grown children of my own. (one of which was ADHD) and I have seen children without disabilities act out in much the same way as Lucy has although to a lesser degree I’m sure and kids seem to ALWAYS act out more with their mother’s than their fathers. (It may have something to do with the voice tone…who knows.) But something else I’ve seen is how many parents are so quick to hit. I can’t help but respect you even more for your self control and the love you must have for your girls. It would be easy to hit I’m sure, but that does not solve anything. The children I have cared for with none of the issues your little angel has that are disciplined by the belt behave much worse than the children whose parents raise them with a gentle and guiding hand.
There is no easy answer to challenging behavior, but I do know the consequences to solving a child’s misbehavior with a good “smack” create even more problems than they solve.
I know that spare the rod and spoil the child goes WAY back, and it is more time consuming to guide your child to learn self control, but in the end, having self control to teach self control makes much more sence.
I feel for you and can understand your going to another room to cry as Lucy looses control for whatever the reasons may be. I’m sure Lucy realizes how much you must love her though.
I find it amazing and inspiring to read how far your girls have come in their young lives, both of them. You and Aaron must be doing everything right don’t ya think?
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December 6th, 2009 at 11:18 pm
I thought of SPD right away as well. I hope you’re finding some answers. I haven’t been through SPD therapy myself or with my own children, but I’ve done a lot of research in the adoption world (someday, hopefully…). From what I recall, a lot of therapists don’t know about this diagnosis. Some don’t even believe in it! So I have to wonder if previous therapy did nothing to address those specific issues. You would really need to talk to a therapist who worked specifically in this field, and see what they say about your situation. I doubt you have much free time, or spare energy even, but the potential benefits of an eval could make it SO worth your time.
I really hope you find someone who can help. This is just so much for one person to deal with, it really is.
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December 11th, 2009 at 5:17 pm
hi rachel, its me rachel. i posted on your ‘strong enough to be your mom’ post. just wanted to let you know that my josie, who has spastic quad cerebral palsy startles very easily and would cry and cry. she eventually was diagnosed with infantile spasms. these could be triggered by anything…cough, scream, barking dog. this is a form of epilepsy and is now treated with phenobarbital and valium and this has helped so much! just wanted to pass this along. rachel
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December 18th, 2009 at 6:56 am
I am laughing so hard as I read this-not at your plight but that I too have put those headphones on and thought- well, there is nothing I can do now but wait it out. (or at home- go cry where no one sees) Bless your heart mom – and all of ours whose children have those sensory issues- they are a beast- and mine too will gain control is someone else depending on who it is just tells him that he knows better than that and boom he stops- his OT specialist can just snap her finger and say, “stop that right now you know better than that” and he stops- oh to have her magical powers. I pray for your strength and tenacity as you deal with SPD. There is a special place in Heaven for our children and for us!!!
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December 18th, 2009 at 11:56 pm
Thank you for sharing this story! It really is nice to hear. I can sooo relate. My 9 year old has a language impairment. She didn’t speak until age 3 and her overall expressive/receptive speech is slower in developing although she is very bright. Anyway, sometimes it is hard to tell where frustration from the language thing ends and stubborness and bad habits begin. Leah is so impressive even if she wasn’t deaf that sometimes in the past I have compared her to my nonhandicapped child. Thanks again!
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December 22nd, 2009 at 12:02 am
Have you heard for NAET? (www.naet.com)? My daughter has severe food allergies. It sounds a little weird, but it works! It’s been used for other diagnosis as well. Might be worth checking into. They key is finding a good practitioner. I can ask our practitioner if they know of someone near your area, if you’re interested. Blessings to you. You’re an inspiration!
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December 22nd, 2009 at 5:21 pm
Just reading these posts, some of you are far more incredible than
i could hope to be in your situation, but, being a mother to two kids who can often be a handful (and often at the drop of a hat) i find that employing Cesar Millan’s techniques of calm assertiveness, and even his three rules of Excersize, Discipline and Reward, which he applies to our four legged counterparts can be a huuuuge help! The problem could be, and you may not even realise it, is that
in certain “high risk” situations your energy maybe changing towards your children. My thoughts are that this stranger on the plain displayed the calm assertive energy that calmed both Lucy and even you down! I highly recommend reading
his books, they are a good read anyway!
I wish you all the best with your lives, and happy Christmas to all of you.
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December 29th, 2009 at 2:29 pm
Wow, sounds like one of my boys sometimes. I adopted 4 boys and two have disabilities. I always get the same thing from people who think just because they have a disability treat them different. However, I have learned it is all about education but some people do not want to be educated. I see this as their loss because children with special needs are truly Angels.
I am in the process of adopting my 5th child a deaf 14 year old boy with spina bifida. As a single dad most think I am crazy but love children and always wanted children. In foster care there are so many wonderful children who need a loving home.
Again many thanks to you for creating such a wonderful tool like ‘Signing Time”. What an amazing story you have to share with so many. Would love to have you come share your story with my high school ASL students and my parents who have deaf children and deaf children with multiple disabilities. I think your story would be a huge impact on them.
Thank you,
Christopher Worley
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January 8th, 2010 at 8:09 pm
I always love to hear about someone else’s challenge with their own screaming child so I can learn from their experience. My grandson, Mikie is 9 years old, has Noonan’s Syndrome and is Deaf. He has always had these loud out of control fits when he doesn’t want to do something or wants something. He will lay on the floor at Wal-mart or in the middle of the road, kicking and screaming. I’ve gone around the corner so that he couldn’t see me and it didn’t matter. I’ve taken him into the bathroom, talked with him, asking what do you want and always end up just waited. My first instinct is to try to find out what he wants since he rarely lets anyone know. My second is to spank his bottom, but he has severe scoliosis and trying to force some children regardless of their health just seems to make them scream more or I hurt myself ;-(
For the longest time Mikie just didn’t choose to sign so communication was frustrating for the entire family. His mother and I sign, but he has just in the last year started to sign. The educators at Blossom Montessori School for the Deaf have really brought the best out of Mikie. They have been patient, working around his medical surgeries, missing school, etc. He now wants to learn.
Lately, I have chosen to just hug him until he is through screaming and kicking. I wonder if this is spoiling him. Yet, I don’t give in and give him what he wanted, I just tell him no and hug him if he lets me or stroke his head till he stops crying, then we go on. This makes me feel less angry and the crying doesn’t seem to last as long. It’s interesting and very challenging.
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January 10th, 2010 at 5:29 pm
Melissa: Hmmm. Since we only hit the beach a couple of times a year, I am not sure that we’re ready for it. Like I said I always see them, when Lucy is not with us. (Of course) But thanks for the info. I love sharing ideas and hearing about what works.
Sally Oster: A magic wand? Wish for anything? I would wish that we knew why she was having breakdowns. I want to know why they happen and what I can do to support her through them or to help her avoid them all together. I would want to know why, when she CAN communicate so well, she chooses not to sometimes. Where is the switch to flip?
Erica: Cool! I think it’s great that those area available. We may just have to swing through Colorado and check it out.
Elspeth: Interesting. I can relate. I remember times I shut down, even though I knew what was wrong. I just wouldn’t say it. Maybe she gets it from me.
Gigi: Oh good! Someone I can call for backup. Now, I think it would be comical for someone who has read this to actually be nearby when it happens again. Wouldn’t you all feel empowered to help?
rachel: LOL, get ready for this. (I’m blushing) One day in Mexico we were near the pool and Lucy started having a moment. She started screaming for no reason I could see. It was a cool day, and the pool was cool too. I picked her up, thinking pretty much what you said, what if I could shock her out of it. I was smiling when I did this. She kept screaming, so I jumped into the cold pool with her. She was SO MAD. She kept screaming. I kept smiling. LOL I think Aaron was shocked. He took some great pictures of the event though;) She wouldn’t stop as I swam around with her. So I said,(smiling) “On the count of 3 you are going under!” She can hold her breath and go under water. So I counted and dunked her. (MADDER STILL) and I was almost laughing, because I now what. I counted again and dunked her. She came up yelling. I think I dunked her 3 or 4 times before she said. “Why did you do that to me?”I said, “You were out of control. You can’t scream under water.” Her response, “That was rude mom!”
What are our options? We can’t spank our kids anymore.
Lauren @ hobomama: I know. Everyone stares straight ahead and pretends they are not impacted. HELLO! I really did talk to the flight attendants on our next flight too. I told them to please intervene if my daughter starts screaming. At first they were thrilled. They came up to meet Lucy and then pulled me aside and said, “Wait, she has a disability, maybe she can’t help it.” I told them, she can help it and PLEASE help me if she screams!
I think the moral of the story is, give people permission to help. Tell them the best way to help.
Tammie: I wouldn’t say we do everything right. Sometimes it feels like we are muddling through. Recently when she needs a timeout. I put on headphones and work in another room. It throws her off that she is getting no response to her tirade. When the time is up, or when I’m ready I’ll start talking to her. Last time she asked, “Couldn’t you hear me?” I said, “No I was working. I have better things to do than listen to you scream at me.”
RaeAnne: Well it is sounding more and more like SPD isn’t it. Maybe it’s time to try a new OT and PT,
rachel: REALLY? I have wondered if there is something that can take it down a notch, though I hate the thought of doping her up. Interesting. How did they diagnose it? What kind of doctor did the eval? or tests? I’ve had people suggest she might be depressed, a little Zoloft might help, but I don’t think that’s it.
Kayren Babcock: I hope there’s a special place in Heaven, because sometimes it’s a living Hell.
Venisa: Leah is very bright. We worked hard to make sure she acquired language in spite of her inability to hear language.
Li & Alana davey: I love all of the great resources coming in! Thank you.
Christopher: Wow! All I can say is wow! Your 5th?
Debora McFarlane: I don’t think it is spoiling him at all.
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January 21st, 2010 at 3:48 pm
I googled your name because my son loves the songs that he sees you singing on Nick Jr. I didnt expect to find your blog. I love the way you write and how you share even the most embarassing stories with us. I want to thank you for the work you do. My son is learning sign language because he refuses to talk and he enjoys watching your videos.
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January 24th, 2010 at 11:06 pm
I have traveled with my children on a plane several times, my son (5yr) has always been pretty good, but my daughter (18mo.now) was one of the crying babies last summer. She was 11 months old. I tried everything I had (milk, water,food..) but she was just tired and could not sleep. She is not used to sleeping on my lap, only the crib. So I did get the look of some people but others were nice who had kids and understood.
But let me tell you that she screams when we go to the doctor. It’s awful, for the last 3 or 4 months she has been the screamer. She has had her appt for the flu shots, the spina bifida clinic, her audiologist, ear infections,…all kinds of doctor visits and there is nothing I can do, any suggestions? I have tried treats, toys, distractions, songs. I just think she has had enough, but she has to keep going. Her disability requires care and there is no choice, plus the regular appt. for kids her age.
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April 20th, 2010 at 10:14 am
Wow, what an experience Rachel! It hit pretty close to home because I’ve had very similar experiences with my oldest daughter (9 yrs old now). I thought for a long time that I must be the worst parent in the world because of how out of control she acted sometimes. It’s a terrible, terrible feeling for a parent to be yelled at like for a good hour that knowing there is absolutely nothing they can do to stop it. I’m in 100% empathy with you on that one!
In our case, we finally found out that the solution was sickeningly simple. It was almost wrong to be so simple. I learned about the scientifically based Feingold Diet and stopped feeding my daughter artificial colors and flavors (that means none–zilch, zero, not even a tiny bit). In 1 week, I had a different kid. Her outbursts stopped. I don’t know if it’d help with Lucy, but it sure worked miracles for us. We’ve proved it many times over also when she accidentally gets some artificial colors—whamo!
On another note, your videos have proven to help my 2 year old son really start talking. I almost took him to speech therapy because he was being so challenged in talking. I found your video snippets on youtube.com and started showing him those. In just a week of doing that, his vocabulary and pronunciation started improving dramatically. He LOVES those snippets! (We just do snippets right now because with our home business, finances are a little tight. As soon as I can though, you’d better bet I’ll be buying piles of your videos!).
So thank you! You’re work is a real blessing in our family.
Kama
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April 28th, 2010 at 11:17 am
I know this is an old post- I just wanted to comment. Your post brought tears to my eyes, and then made me smile.
Thank you for being so brave to share such personal feelings.
I can’t pretend to know what you go through because I don’t have a child with a disability. But I do have 5 children. Sometimes I feel like mom of the year, but more often then not I’m just fumbling my way through and hope the kids don’t notice. I’ve felt joy at the blessings that God has given me, and on bad days I’ve wondered what on earth possessed us to have 5 kids. And then I feel guilty for thinking such a thing. On the bad days, I feel like the kids are kicking my behind, and I feel so defeated, and sometimes resentful. And then the Lord reminds me of my place and perspective in this world. They are not *my* children. They are His.
I think all parents just have to take things one day at a time, and pray for God to guide us through it as it comes.
God bless you and your family as you find your way together in this life. You have been such a blessing to so many others.
-Jenn
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June 8th, 2010 at 5:04 pm
I felt (and experienced) every syllable of your story. I’ve been in locked rooms crying. I’ve been cruelly stared down on planes. My daughter would be set off by sitting 1 inch too close to her or because I breathed a decibel above her limits. Our problem was that because she looked normal people just thought she was spoiled and I was a terrible mother. I cope with comedy just like you…what else can you do (except go crazy). She is 16 now and with a good doctor, she is finally coping and becoming a beautiful young women. X
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June 8th, 2010 at 11:10 pm
Rachel,
a WONDERFUL book that will help with tactics to curb the sensory meltdowns is Called Parenting by Doug and Patsy Arnold. You can get the digital download on LULU for $15. My son and daughter are both on the autism spectrum and have serious sensory issues… we have used this book both to understand them and to help them in many ways. It is aimed at parents who home school their special needs children, but the information applies to all children with special needs.
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June 22nd, 2010 at 1:02 pm
[...] of her posts. Rachel is a woman on fire. She is a purposeful mother who blogs honestly about her shortcomings as a mother, her motivations and her children’s [...]
September 25th, 2010 at 10:56 am
I don’t know if this has been said yet. My son has Autism which Sensory Intergration Disorder goes right along side it. We’ve dealt with ALOT of these situations, and he’s only 5. It is difficult because, on one hand, people hear him speak and assume he’s just being a spoiled brat(HF with above age level articulation) or they see his wheelchair and AFOs and assume that he’s cognitively impaired. My husband and I end up with the “Control your Kid” looks or the ” How DARE you discipline that poor child” looks.
To avoid sensory meltdowns in situations like yours ( closed in places with alot of people, places where we cant get up and leave, places where quiet is expected, etc), we found that an MP3 player helped ALOT. We got him a kid one, the LEGO MP3 player and it works wonders. It allows him to tune out the world and ignore the small noises or startling noises. My son is 5 and still has the startle reflex which drives him nuts. This can even help him fall asleep since noises activating that startle reflex won’t be waking him up. We filled it with kid songs and disney songs, even your songs from our CD. Weighted vests and blankets work wonders for him, too.
I hope this can help you out.
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January 27th, 2011 at 2:20 am
Just an idea that works for my family:
When we travel with our kids we bring a jar full of disposable ear plugs. They’re cheap enough. We let people know they’re available at the start of a long flight and we say we’ll do the best we can to keep the kids quiet. It makes a big difference in how we are treated by our fellow passengers.
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