Monday, April 2, 2012

Curious

I know that normally as a blogger I am standing on my soapbox while atop my high horse, monologuing. But today I am posting somewhat of a poll as I am curious.

Those of you who parent a child with Down syndrome (or a child with special needs), do you find that child is especially particular to a specific schedule?

Addison is not a good traveler. She refuses to nap outside of her bed- she gets overstimulated by all of the people and the new surroundings.

After she misses even ONE nap her body starts to turn on itself. She gets a fever and other "sick" symptoms that go away as soon as she gets some sleep. She also starts refusing to eat or drink- it's bad.

I hold her VERY CAREFULLY to her schedule (I get quite a bit of flack for missing things due to keeping her to this schedule) to avoid these symptoms, but of course when traveling it's unavoidable.

Carter isn't old enough for me to tell if he will be the same way- but Addison is over two and shows this very strong reaction every time her schedule is ignored.

My question is- anyone else notice this with a child with special needs? Or is this an individual thing?

I'm just curious and trying to figure out ways to help her be more flexible, but hate messing with a good thing.

Thoughts/things that have worked for you if you notice the same sort of behaviors?

Also, I know I have been otherwise preoccupied, but Patti's GIVEAWAY ends tonight. So if you were thinking "I'm going to LATER" -later is now. Hop on over and please, please, please help.

and to all of my friends traveling a similar journey but on a different path- Happy World Autism Day.

26 comments:

  1. My son Jonah was autistic. I'm not sure if you know much about Autism but people with autism are extremely structured and HATE having any part of their daily schedule changed. I learned to just go with his flow. Not to try and change it because it only caused lots of grief. My other children weren't/aren't like this. Noah and McKennah were very "go with the flow" and Hannah is as lackadaisical as you can get. I am thinking children (especially young children) with special needs truly count on structure and being able to predict what their day is going to consist of. I'm not sure if my answer is really going to help you other than to give you hope that you are not alone!

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  2. Wow, never heard about *physical* symptoms accompanying a change in schedule, but YES, schedule is VERY important with Samantha. Transitioning from one thing to another, especially when it's not expected or out of the ordinary from regular routine, can be very challenging. It's gotten better as Samantha has gotten older, but is still present in many ways. We got her on a sleep schedule by the time she was 3 months old. We almost never wavered from it, nor do we now, and we currently (and have always) enjoy a happy, well-rested child who is ready for bed at bedtime. When we were researching preschools a few years ago, one of the schools we looked at talked about how they just go with the flow of whatever the children want to do. I *immediately* took them off my list. At that time, Samantha really needed structure and schedule, and God help anyone who said, "Okay, children, we're going to cut paper with scissors now," then, 10 minutes later, "Okay, children, I see most of you want to go an color now. Put the scissors away." Let's see just where those scissors end up...

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  3. Brooke is totally flexible...I can put her to nap at noon or 3, she doesn't care. The only thing that gets her in hunger, she doesn't need a meal schedule, but she definite'y needs a snack if we're out and about and missing a time...she's the most easy going baby I've ever had...
    Blake needed his schedule though...or the cranks came

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  4. Maria from SpainApril 2, 2012 at 2:29 PM

    Deanna, the situation has reminded me of myself when I was a child; everytime I had to travel anywhere I got stressed and refused to eat and used to throw up food; I was also very sensitive ( still I am) to changing of bed, but I got better when got older. The first time we went on a trip and I ate the whole meal without throwing up my parents were thrilled!!. In my opinion it's psychosomatic, the body's response to stress . Anyway, you can ask your pediatrician.

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  5. I have two daughters, one with Autism and one without....

    My 8yr oldNT daughter is VERY structured. She has never slept away from home without us. We had to have dinner at X-time each day or she will tell us we are late....she struggled to stop napping at 5...bedtime is 8 on the dot! We were driving home from CT one night last fall and we just started a two and half hour drive. The clock in the car showed 8PM and she told her sister to shut off her game because it was bedtime.

    Her 6yr old sister with Autism is much less structured. Too much structure gives her anxiety. She would rather just chill all day. But knowing what comes next in the day does give her more control.

    It really could be her personality and temperment.

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  6. Emily is very flexible when it comes to schedule, however, my firstborn Ethan who does not have DS was totally miserable if he missed even just one nap. I think since he was my first I got him on a schedule and there really wasn't much that got in the way of it so he just didn't adapt well especially when we traveled, he would not sleep well at all. It's better now that he is 5, but he will even ask to go home and sleep in his bed after a day or so of being away from home.

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  7. Deanna, I wonder if it is temperament related, more than special needs related?

    KM is VERY sensitive to stress, and her body will do the same thing that you mentioned Addison does. If she gets overstimulated at playdates or church, she'll come home with a fever and act sick for 24 hrs until she gets back onto a normal calm routine again. I've never heard of this happening to any other children, but KM is VERY intense, and just can't seem to handle the pressure of being stressed.

    Addison doesn't seem as high-strung as KM, but she does seem to have a strong, intense personality. :) Perhaps that's what's happening?

    Hope that helps a little.

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  8. It hards to know how much is the child and how much is you. I do not ever stick to a schedule. My husbands and mine jobs were never 9-5s, and therefore our days are never routine. None of my kids blink and eye when we do something out of the norm, because, thats pretty much every day. Then I have friends who are sticklers to their schedules, and one step outside of it means total melt down for their kids. But I know that all kids have different personality types born in them. And if you fight what comes naturally to them, then you will have an unhappy kid. Still, I cant help think that if from day one you are lax about a schedule and a relaxed parent in general, that wont rub off on your kid. Professionals say a schedule is best, but it just doesnt work for me and my kids.

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  9. if it helps any, both Kalyn and Aaron would spike a temp when overtired. A good night's sleep and they'd be much better.

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  10. I have really enjoyed reading your blog.... Came over to follow you for an EXTRA ENTRY in the giveaway.... And have been blessed. Praying for your sister and your entire family....

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  11. I think it's more just an age thing than anything to do with Ds...Of course I'm not an expert...But from having five kids I just notice that some when they were young acted the very same as you see Addison act or be affected when changing up her schedule...And others of my kids were easy going and couldn't care less what was going on.

    With My Nephew who has aspergers, EVERY thing is on a schedule and he needs to stick to it or he gets confused and almost anxious. So I think it's an individual thing...I could be wrong though.

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  12. You just described Landon to a "T"! He needed his schedule and his naps to function and traveling was awful until he was over 3. If he missed a nap during the day he slept awful that night and if we were traveling and he missed his schedule or routine life was miserable for at least 2 days once we got home. Sutter has always been more flexible - I still don't let him miss a nap or stay up much past his normal 6:45 bedtime but he is a little better at adjusting or going with the flow than Landon was or is!

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  13. When my neuro-typical daughter was Addison's age, and older, if she went off her sleep schedule two night in a row, she got sick.

    My granddaughter, on the autism spectrum, goes with the flow!

    I do believe it is individual.

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  14. when we began early intervention with Elias (who is 7 now with DS) one mom from the group who had a 2yr old boy with ds told me how i should get used to not travel, or not having dinners with friends because our boy would not like to fall asleep, eat, or whatever that is different to what he likes or is used to.
    we though it was a myth, and we didnt liked that for him neither. so everyplace we went he came with us, maybe is because he was never in a hospital, and he is very healthy, and our weather is good so we were out a lot with him, that he got used to changes, he can fall aslep wherever, no matter if its not his bed (and i think his least favorite place to sleep is his bed lol) he is very good in travels. he is not very good in changes at his stuff, like he doesnt eat many food , or he likes to do things on his way, if you change that BOOM major drama. but we are working on "its nothing" "try it" "you can do it this way too"

    Eva, who is 4 and also has DS (adopted 6 months ago) is way better with changes since she had a life full of changes in her short life, so she goes with the flow very easy.

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  15. forgot to say that Elias slept a lot until he was 3, but either way he could sleep or not and he could function well, although if he didnt nap and he woke up early he was very hyperactive

    Eva needs her nap, tho again she cant skip it and will be ok, but for our mental health is better if she naps :)

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  16. Hailey is a fly by the seat of her pants kind of girl. She has to have a nap every afternoon (she is trying to give up her morning one)...but if we don't put her down...she will fall asleep anywhere. Her eating is probably the only thing that she prefers a schedule on and she will let you know when you have waited too long. Best of luck!

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  17. Holden is very structure oriented--not to the extent of some of the other children described here, but certainly to the point of getting very sick if his schedule is disrupted. The Early Intervention program he is in is much more structured than the day care, and he functions so much better there. Structure is definitely a requirement for my son! Praying you will all adjust back into your routine quickly!

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  18. My son with Down syndrome is only eight weeks old, but already he seems to thrive on structure and routine, whereas my four-year-old son HATES structure! It took me well over a year to get my four-year-old on a nap schedule--and I was ruthlessly consistent! But my eight-week-old is already on a nap/sleep schedule and seems to get VERY grumpy when I mess with it. I don't know if that's a Down syndrome thing or a Samuel thing, but I've sure noticed it even just in the past two months! My two boys are just polar opposites on how they feel about routine and structure, apparently.

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  19. My son with Down syndrome is only eight weeks old, but already he seems to thrive on structure and routine, whereas my four-year-old son HATES structure! It took me well over a year to get my four-year-old on a nap schedule--and I was ruthlessly consistent! But my eight-week-old is already on a nap/sleep schedule and seems to get VERY grumpy when I mess with it. I don't know if that's a Down syndrome thing or a Samuel thing, but I've sure noticed it even just in the past two months! My two boys are just polar opposites on how they feel about routine and structure, apparently.

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  20. I don't know if this helps but you ask us to comment, so here goes... :-)

    My daughter (who will be 3 in June and not autistic) thrives on a schedule and routine. She doesn't display physical (*sick*) symptoms when her schedule is interrupted, but definitely behavioral symptoms. Example: She gets extremely upset when we switch which parent is picking her up or dropping her off from school. Another example: She has a meltdown if she doesn't help feed our two pugs when she gets home from school. Finally: She won't eat her meal and has a "tantrum" if we don't follow the same routine of which plate/utensil is used. I think that the routine provides her with some comfort and control of her circumstances. I have no formal education in psychology or early child development but I believe that in her little mind, she might think that if she can't rely on some of the simple, mundane parts of life being the same and consistent, then she can't rely on the bigger things.

    So even though she might start to cry when I'm the one picking her up from school and she runs away and doesn't want to see me... I don't get hurt, I don't take it personally. I believe it means that she loves us both very much and needs to know that her daddy is always there for her because he's the one she normally gets to run to at the end of her day at school. And I know that within a few minutes with me, she's fine and we're having fun with some activity at home until he can get there.

    And by the way, I'm relatively new to your blog, but have quickly fallen in love with your writing, as well as your adorable little Addison. All the best!

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  21. It could be more of a first kid thing. The more you have, the more things that are going on, the less control you have over schedules. Hannah who has DS is very go with the flow, but that is because she has to be since she's number 4. My first is still a structured person, and he's 12!

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  22. Your going to think I am crazy but my husband and 3 other children are in Disney for a week without Maddison and I. A totally paid for trip from our in-laws, and I gave it up to keep Maddison home on her schedule. Some say I am nuts. But she is walking really well and she just started, I couldn't see keeping her in a car seat for a 24 hour ride there and back then 14 hours a day in her stroller running around a to crowded park. So is it me, or her, that likes the schedule, not sure but I'm not risking 6 of us sleeping in a room together to find out if it was worth it, we will go next time and I will be sad and lonely without my family over spring break, but will be enjoying my girl and our schedule!

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  23. My Mom said that we thrived on a routine and a schedule. If I didn't get enough rest, my allergies (asthma, hayfever, and eczema) got much worse, I sometimes spiked a fever, or got hives, and my disposition worsened without my sleep. With adequate rest, discipline problems were minimized. Mom was a teacher who had long operated on a schedule. I'm not saying we NEVER departed from it, and that we never went to bed late, but she usually tried to prepare us for changes and special things with a quiet rest or listening to music or a story. Of course as we got older, it was a little easier. I stayed up late to study in college and grad school, but only because I HAD to -- my family still calls me "Miss Lights Out" and my sister is "Our Night Owl." If the activities were too stimulating, it took me a while to wind down -- and I think it still does. I crash pretty quickly once things slow down. So I think personality and need contribute to this, too. I always did better at home than on the road as a child,too.
    Love,
    Doc

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  24. I do not have a special needs child, but with my job, I spend my days helping families and their special children. What you mention is very common. I see this quite a bit with my children with Down Syndrome. I feel that structure and schedules are very important but variations to the schedule are also important. When you know that your schedule is going to change, my best recommendation is to prepare Addison for the change. Talk to her and tell her what the plans are. She will probably not understand, but it starts a routine where by you can start preparing Addison for changes. Have Addison take something with her that is personal - a favorite blanket or stuffed animal. Plan schedule changes. Start small, 5 or 10 minutes later for a nap, nap at a different time of the day. Maybe one of these will help you. Good Luck!

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  25. My daughter is 15 months with DS and is not like that at all...tho we were never strict on any schedule with her.Shes a "goes with the flow" kinda girl i guess :)

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  26. Thankfully Claire is a great traveler! Since we live in the middle of nowhere, it literally takes us 2 hours to get anywhere. To the grandparents, to private therapy, to decent shopping...At home we try to stick close-ish to a routine, but since we do mega travelling days at least 2-3 times a month, its a good thing Claire is flexible.

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