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.”

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About Rachel Coleman

The opinions and late night musings published on this blog are Rachel de Azevedo Coleman's alone, and are not ever intended to represent the opinions and sentiments of any organization or product that Rachel is, was, or will be associated with. Rachel Coleman is the creator and Emmy-nominated host of Signing Time!, the children's American Sign Language vocabulary building series. She is also the creator and host of Baby Signing Time, Rachel & the TreeSchoolers, and Rachel & Me. Rachel now serves as the Executive Director of the American Society for Deaf Children, a 501c3 nonprofit established in 1967 by parents of deaf children. ASDC is the American Sign Language organization for families who are raising deaf children. www.deafchildren.org Motivated by her child, Leah's deafness, Rachel has spent the last 18 years creating ASL products to help bridge the communication barrier between hearing and signing communities. In 2006 Rachel founded the Signing Time Foundation, a 501c3 non-profit dedicated to putting communication in the hands of all children of all abilities. In 2014, the Signing Time Foundation launched a 50-Lesson online ASL curriculum called "Sign It: ASL Made Easy" that is available free-of-charge to families with deaf or hard of hearing children ages 36 months and under. Apply at www.mydeafchild.org. For those who do not qualify to receive Sign It ASL for free, they can find it for purchase at very reasonable rates on www.SignItASL.com. Rachel and her husband, Aaron, live in Salt Lake City Utah. They are parents to Leah who was born profoundly deaf, and is now a senior in college at NTID/RIT in Rochester, NY. They are also parents to Lucy who has spina bifida and cerebral palsy, and recently graduated high school. In 2010 the Colemans were joyfully reunited with Rachel's daughter Laura. Rachel is proud to be Laura's birth mom. Laura was placed for adoption as an infant in 1992 when Rachel was 17 years-old.

76 thoughts on “That Child Screaming on the Plane… is Mine

  1. 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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  2. 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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  3. 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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  4. 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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  5. 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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  6. 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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  7. 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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  8. 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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  9. 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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  10. 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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  11. 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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  12. 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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  13. 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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  14. 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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  15. 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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  16. 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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  17. 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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  18. 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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  19. 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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  20. 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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  21. 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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  22. 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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  23. Pingback: She's Not Heavy... | ohamanda.com

  24. 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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  25. 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.

    [Reply]

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