Wednesday, June 06, 2007

6 months ago......

ashlyn started occupational therapy at children's hospital for sensory integration dysfuction.

after exhaustingly trying to explain what it is that ashlyn (and the whole family) suffers from, i finally found a site that best explains it in layman's terms.

taken directly from www.kid-power.org:
Sensory Integration Dysfunction is the inability of the brain to correctly process information brought in by the senses. Sensory Integration Dysfunction (SID/DSI) or sensory processing deficits can come in many different forms. No two children will be affected in the same ways. Children with SID/DSI can be either hyposensitive or hypersensitive to outside stimuli. For example a child who is hyposensitive to touch will constantly be crashing into things seeking extra stimulation while the hypersensitive child will avoid being touched or touching things when at all possible. SID/DSI can also include children who have processing deficits in one or more areas. When a child has a visual processing deficit, it does not mean that they cannot see. It means that they have a hard time finding the words for objects they are viewing or, if asked to go get an object, they might look right at it and then say they can't find it. This is because they are seeing it but their brains are not processing that they are seeing it. Auditory processing deficits are the same, the child hears what you say but the brain does not process it so the child understands or it takes several minutes for what you have said to "click" with the child. One way to help with auditory processing deficits is to break down instructions, giving them one thing at a time to do. Let them finish the first task before you give them another instruction. Listening or music therapy can also help with auditory processing deficits.

Below is a list of other behaviors exibited by children with SID/DSI:
- Loves to spin, swing and jump--this will seem to calm them down after several minutes.
- Complains of how clothing feels, does not like tags left in their clothing and have to have their socks on just so, or a certain kind of sock.
- Picky eaters--get stuck on one certain food and is basically impossible to get them to eat anything else.
- Oversensitivity to smells. Or undersensitivity--may sniff people, objects, food.
- Oversensitivity to sounds--will frequently cover ears. Or undersensivity.-- May have an exceptionally high pain tolerance
- May tire easily, or the extreme opposite-- Unusually high or low activity level
- Resists new situations
- Problems with muscle tone, coordination, motor planning
- Can be very impulsive or distractible.
- Persistently walks on toes to avoid sensory input from the bottom of the feet.


if you were to meet her just once or twice, you probably wouldn't think anything was different----you'd maybe think *she's a hyperactive child that has a few quirks.* but if you are around her consistantly, you'd notice for sure.

i'll comment on the list above:
1. she can't get enough swinging--especially laying all sprawled out on her belly on the swing, every time she comes down the steps, she runs down the first three, then launches through the air skipping the last 5--great sensory input for her body, but i gasp and hold my breath everytime and silently pray she doesn't break her leg when she lands, and i fear if the trampoline pops a spring we'll be in for a real adventure dealing with a major meltdown and withdrawl symptoms.

2. *sigh* this is a major issue for ash. always has been for as long as i can remember. diaper tabs were the first offender. we just thought it was a little quirk, but looking back now, we see that she showed MANY signs of this disorder from an early age. anywho. clothing is always too scratchy, too tight (even when it isn't), socks are a rarity (make her feet "hot"), and the biggest thing now is that she has to have the thick training underwear instead of panties----because panties "stick up her butt." the problem. it's hard to find training underwear in a 5 1/2 year old size. shoes are another issue---she's often found in flip-flops.

3. picky eater. let's just say, all meat is "chicken", otherwise she won't eat it. she won't drink milk unless it is warmed, not all apple juice is the same, and she's stuck on grilled cheese and mac n cheese. but don't think about switching to a different brand of mac n cheese that is more "orange" in color---she won't have no part of that. crunchy foods are out....except pretzels.

4. very sensitive to smells. doesn't sniff people, but everything smells like "mookey stink".....moo like a cow, moo-key stink. someone tell me, what is mookey stink? this also goes hand-in-hand with the picky eater stuff. if is has a stronger smell, she won't eat it.

5. oversensitive to sounds. she can't be in a room with more than 2 sounds....like the tv and talking is fine. but add another sound and her world is falling apart. tornado sirens, firetrucks, fireworks, marching bands, car alarms, louder than normal voices....all send her into a tailspin.

6.may tire easily....ha! NOT. she's definitely the extreme polar opposite. we used to call her the energizer bunny. she keeps going and going and going. she has a hard time bringing herself back down to a calm state. getting her to stay in bed and fall asleep before 1am is a constant battle. she'll go to her bed at 9pm and never fall asleep....she just can't turn herself off to the stimuli around her.

7. resists new situations. yep. the exact reason we pulled her out of her second year of preschool. she had a meltdown every single day---the only 3 places she is comfortable in....our house, grams & papa's house and grammy & papa's house. nothing else is "safe". but even at her grandparents house she doesn't want mommy to leave. she will instantly become a cling-on and has major seperation anxiety.

8. problems with muscle tone, coordination, motor planning. she doesn't have problems with muscle tone, but coordination is a problem. i notice it most when she's trying to dance. every day we listen to music just before i start cooking dinner. let's just say, she's a total clutz....nothing graceful about it. hopscotch is a challenge, monkey bars--she can't let go with one hand to reach for the next bar and so on.

9. can be impulsive or distractable. this is the biggest frustration for me. i can ask her to go to her bedroom (only 8 steps up the stairs from the livingroom) to get something. if there is anything in the path she takes from point A to point B, her brain cannot overlook it and continue on to complete the task at hand. she also has a hard time processing things visually. i can ask her to go get the phone off the table, which might also have 3 other things on it, but she "can't find the phone." she can look right at it and say, i can't find it. if i ask her to clean up her room she has quite the meltdown---it's too overwhelming. but, if i give her small simple commands one at a time, she can do it. like...pick up the book, put it on the shelf,(wait til she does it) make your bed, (wait til she does it) hang up your sweater (wait til she does it), etc.

10. may walk on toes to avoid sensory input. she doesn't avoid sensory input from her toea, but the therapist is working on sensory input with her feet. 99% of the time ash will sit in the "W" sit with her each leg tucked to the respective sides. "criss-cross applesauce" (aka indian style) is the goal.

adding on things that weren't mentioned.
11. she is oversensitive to light. her first phrase as a toddler "its so sunny." but even on a cloudy, overcast, but a bit on the bright side day, it's too sunny for her. sunglasses still don't filter the light enough. i haven't found a good solution for this problem. i can't tell you how many pictures i have of her like this.....hey, i think i just found a new subject to document in the scrapbook.

Photo Sharing and Video Hosting at Photobucket

12. oh back to resisting change. she will find one cartoon or one movie that she likes and will watch it over and over and over and over and over. same with music. the only thing sound from my car is a tape of the song doug sung to me at our wedding. ash calls it the wedding song. over and over and over and over it plays from the time we get in the car until we reach our destination. she never tires of it.

13. she obsessively organizes things to the point that it interferes with daily activity. she does this at therapy too---so they are working on it. take play-doh for example. she will take every toy, cutter, mold, etc out of the container and line them up side by side by side, along with each color of playdoh and spends 80% of the time she has to play with the stuff just organizing it and getting it just so. then she'll play with one thing at a time, no mixing colors.

14. this spills over into meal time. foods on her plate must be completely seperate....they can't touch, or she won't eat it. she also has to have a different eating utensil for each food.

15. she hates for her hands to be dirty and HATES water in her face.

16. tickling is painful to her. roughhousing is totally acceptable.

there is so much more, but i think this gives everyone a good idea of the challenges of living with a child that has a sensory processing disorder.

a meltdown is exactly what it sounds like. think of the terrible twos....crying hysterically, not being able to reason with the child, arms flailing, legs kicking, screaming. yeah, one of those kind that you swear your kid will never have. the kind that make you want to crawl in a hole and shrivel up before you want to be seen as "that" parent who can't control their child. she has at least 2 of those a day. and you never really know what is going to set her off.

life is constantly on edge----walking on eggshells, waiting for the ticking timebomb to explode, holding your breath waiting for the next meltdown to happen, praying that it won't be during a quick trip to the grocery for a necessity that can't wait until daddy gets home so i can go alone.

i'm so used to her sensory issues that things flow around here----most of the time. i know what she likes, what she doesn't like and what will set her off. but anything outside of our normal surroundings (i.e. eating out, trips to the grocery, clothes shopping, etc) is touch and go. i don't shelter her from every situation that will cause a meltdown, but i do definitely pick my battles. as you have read, there are soooooooo many battles to pick. so i choose the ones i'm willing to pick and let the others slide. some days are better than others---and i've learned to read her body language and know when she's ready to be done. i'm still learning though. we're definitely on our toes around here trying to understand what we could do better as her parents and helping her adapt to her world. it's an adventure. definitely never a dull moment.

but i love her to pieces and wouldn't trade her for anything!

3 comments:

  1. OK... I'm going to comment today! :) I am so proud of you and Doug for being such wonderful parents to Ashlyn. She is so lucky to have you... and thank you for the clear description of her condition. I remember you talking of some of these issues and I commend you on your strength and loving care to make sure she is a happy little girl! *mwah*

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  2. wow Tania you are such a great mom, I know when it comes to our babies we want them to succeed and have the best,some times that means we have to help them through a lot. keep up the good work mommy. lots of love nena

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  3. Ali Mclaughlin6/07/2007 09:18:00 AM

    Tania, that must be so hard! I can relate just a little, Evan is super high energy and a VERY picky eater.. its so frustrating. Hugs to you!

    ReplyDelete

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