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Sensory Seekers - LAC1961 - 07-16-2012
I'm hoping to connect with parents who are facing the challenge of parenting kids with sensory seeking behavior. I hope you'll join me in sharing your frustrations, successes, thoughts, and how you take care of yourselves in times of stress.
My daughter is 5 y.o. with the following symptoms:
-loves movement/spinning/somersaults, loves “rough-housing,†happiest in busy, stimulating environments, going to the playground
-craves salty, extra chewy and crunchy foods
-always in constant motion--unless TV is on (and loud)
-toe-walks, or runs/jumps/skips everywhere rather than walk
-difficulty staying still in seat
-touches everything, puts inedible things in her mouth
-plays rough, hugs other kids too hard
-poor attention span
-craves water/wet activities--bath, swimming, sprinkler. washing hands, bubbles
-Can't potty train (did I mention she loves water?)
-speaks in a loud, booming voice
-speech delays (diagnosed as apraxia of speech)
-highly sensitive to sugar and certain fruits--if she eats them she gets super cranky, throws herself on the floor, bangs her head on things (but fortunately we figured this out early on and have eliminated this behavior)
-Doesn't realize her face is dirty, clothes are disheveled
-Does a lot of risky things--jumps off high places, will jump into deep water, run into traffic, touch hot surfaces
-Falls apart emotionally if plans change, but is easily distracted and redirected
Now for the positive things:
-Very loving and empathetic, tells us she loves us frequently
-Always singing, smiling, hugging, making up stories
-Loves to be read to and wants to learn to read
-Great at puzzles, putting things together
-Will try any food, at least once
-Very helpful. does chores willingly
-Loves to join us for outdoor activities and loves spending time with family
-Very proud of her accomplishments (newest one: can do five rungs on the monkey bars on her own!)
-Makes us laugh--ALOT
-Sleeps like a rock--11 hrs. a night
When I'm really stressed I like to have a glass of wine and read a novel. I usually feel better if I do something active, which is usually mountain biking with my husband. I love educating myself, and in the two weeks since my daughter was diagnosed, I've already read 3 books about SPD. Feel free to suggest some!
Tonight I'm frustrated because my daughter discovered the knob in the back of the fridge and turned it off on Friday before we went away for the weekend. I just had to throw away everything in my fridge and will have to fit a shopping trip in my day tomorrow on top of taking her to her first OT appointment at 5 p.m. (after work)
Thus far, our successes include discovering that heavy lifting really works and helps her to focus, as well as chewing gum or a chewing necklace/object. She made it through an entire workbook page last week after doing some lifting, bouncing on a yoga ball and chewing gum while she worked.
I'm skeptical about the Wilbarger Brushing Protocol, but we've introduced so many new things in the last two weeks, I may not be recognizing its benefits.
I hope many of you will reply. I'm looking forward to hearing your stories!
RE: Sensory Seekers - Jaffa - 07-16-2012
All the symptoms you have written with exception of the sugar is my 5 yr old. To add to this he has a fixation for pouring liquids, ie oil, toothpaste, liquid hand soap etc, onto taps, nail brushes, plugs, knobs on cooker. I have hidden the toothpaste cos he smears the bath with it.
I love him to bits, he is fun, lovable, very friendly (too friendly with strangers) and full of energy and happiness.
Every cloud has a silver living.
RE: Sensory Seekers - Odemus - 07-16-2012
Your DD sounds like a plder version of mine.
My Daughter Lilly is 2.5, she will be 3 in Jan.
She will eat anything no food issues there,
she LOVES water
very huggy and wants constant movement, shes climbing over my legs and jumping around right now,
use to have to be restrained to sleep but now she just pulls a pillow over her head and passes out for hours.
very little speach, but she is making progress and she know quite a few ASL signs,
Her movements are very jerky she still dosnt truly run, but she has PT as her whole body movements are not connected very well she toe walks alot.
dosnt follow 1 step directions yet, but can put any puzzle together you can find and has been able to do that for over a year.
just entered a stage where she mimics everything her bigger brother does.
and just recently went from a if your not mom/dad i wont give you time of day To, ill hug a perfect stranger and try to crawl in their laps..
Loves to watch Signing times, Dora, and Diego
does many repetive actions
Turns into The HULK if you try to take her from what she wants to do.
slams her head into things HARD when shes upset.
takes her shoes/socks off and will walk barefoot on ice for 20minutes if we let her..
loves to be brushed, HATES her hair messed with.
sticky stuff makes her zone out, use to take sticks and jab them into herself and run it up and down her arms and legs.. thankfully shes left this behind since her PT added OT to her week.
there is SO much more about her that is super seeking.
her brother is a Avoider, and was REALLY bad for the 1st 3 years of his life, as a infant she sat in on his ILP since birth, they were born 21mth appart, and we were JUST learning about his issues when she was born.. everyone thought i was crazy becuse i KNEW something wasnt right with him. everyone even DRs said oh he just needs time.. hes fine, your crazy.
so he was JUST RXed when lilly was 2-3mths old. I thought she was going to be our "Normal" one, well here we are near 3 years later and shes WAY worst then Charlie EVER was, and has way less language or direction following then charlie did at this age...
her last Eval put her in the 11mth old for most of her skills... a few things like fine motor are above avarage, but she's always been great at Fine stuff from day one.
sorry so long ..LOL
I just found this place, its been hard, even hubby STILL thinks there is nothing REALLY wrong, and all this is my way of getting more attention
RE: Sensory Seekers - LAC1961 - 07-17-2012
(07-16-2012, 07:20 PM)Odemus Wrote: Your DD sounds like a plder version of mine.
My Daughter Lilly is 2.5, she will be 3 in Jan.
She will eat anything no food issues there,
she LOVES water
very huggy and wants constant movement, shes climbing over my legs and jumping around right now,
use to have to be restrained to sleep but now she just pulls a pillow over her head and passes out for hours.
very little speach, but she is making progress and she know quite a few ASL signs,
Her movements are very jerky she still dosnt truly run, but she has PT as her whole body movements are not connected very well she toe walks alot.
dosnt follow 1 step directions yet, but can put any puzzle together you can find and has been able to do that for over a year.
just entered a stage where she mimics everything her bigger brother does.
and just recently went from a if your not mom/dad i wont give you time of day To, ill hug a perfect stranger and try to crawl in their laps..
Loves to watch Signing times, Dora, and Diego
does many repetive actions
Turns into The HULK if you try to take her from what she wants to do.
slams her head into things HARD when shes upset.
takes her shoes/socks off and will walk barefoot on ice for 20minutes if we let her..
loves to be brushed, HATES her hair messed with.
sticky stuff makes her zone out, use to take sticks and jab them into herself and run it up and down her arms and legs.. thankfully shes left this behind since her PT added OT to her week.
there is SO much more about her that is super seeking.
her brother is a Avoider, and was REALLY bad for the 1st 3 years of his life, as a infant she sat in on his ILP since birth, they were born 21mth appart, and we were JUST learning about his issues when she was born.. everyone thought i was crazy becuse i KNEW something wasnt right with him. everyone even DRs said oh he just needs time.. hes fine, your crazy.
so he was JUST RXed when lilly was 2-3mths old. I thought she was going to be our "Normal" one, well here we are near 3 years later and shes WAY worst then Charlie EVER was, and has way less language or direction following then charlie did at this age...
her last Eval put her in the 11mth old for most of her skills... a few things like fine motor are above avarage, but she's always been great at Fine stuff from day one.
sorry so long ..LOL
I just found this place, its been hard, even hubby STILL thinks there is nothing REALLY wrong, and all this is my way of getting more attention
Don't be sorry for letting it all out.
I think you're right about Lilly being a younger version of my daughter, Ellie. I had forgotten about the hair thing--screams, pounds her fists on the counter. I should buy stock in No More Tangles. The OT suggested I have her hold a weighted stuffed animal while I do her hair. I tried it tonight, and it worked! No hair brushing drama. She had her first OT appt today, and I received (had to ask for) a copy of the evaluation report. They diagnosed her as having dyspraxia, which she has a few symptoms of, but not as many as modulation disorder. I imagine insurance is more likely to cover more OT sessions of they say it's dyspraxia because sensory modulation disorder is not an approved diagnosis. She's approved for 12 sessions.
They put her on a spinning board, which made her really uncomfortable and nauseas. She recovered after 3-4 minutes and went right back to crashing, jumping in the ball pit, doing the zip line and several other activities. I never heard her say so many times, "I'm too tired to do that." On the way home, since we hadn't eaten dinner, I stopped and bought her favorite-chicken nuggets. She wouldn't take even one bite. I knew she was probably still not feeling well from the spinning, but I had to stop at the grocery store due to the "fridge incident" mentioned above. About 20 minutes into shopping, she vomited all over the place. I had to finish the shopping because I have no food in the house. I was just praying, please don't let her throw up again. We made it home with no other issues.
They gave me so many new activities to do at home with her my head was spinning. I think I need to email or call the OT and tell her to please give me instructions in writing. I found out I was doing the Wilbarger Brushing Protocol half incorrectly--brushing wrong, compressions correctly--because she showed us once for about 20 seconds. Our OT is very energetic and knowledgeable, but she moves at the speed of light. After working all day and a 50 minute drive to get to OT, my focus was probably worse than Ellie's.
Ellie has been getting speech therapy for about three years. There has been slow and steady progress, but she's still very difficult to understand, especially by people who don't know her. The bite toys/necklaces have been helpful. She's definitely moving her tongue around more and saying her letters more correctly since we've given her biting exercises. Lilly is probably to young for gum, but the biting sticks may help her with speech development.
Have you read Sensational Kids?
(07-16-2012, 05:34 PM)Jaffa Wrote: All the symptoms you have written with exception of the sugar is my 5 yr old. To add to this he has a fixation for pouring liquids, ie oil, toothpaste, liquid hand soap etc, onto taps, nail brushes, plugs, knobs on cooker. I have hidden the toothpaste cos he smears the bath with it.
I love him to bits, he is fun, lovable, very friendly (too friendly with strangers) and full of energy and happiness.
Every cloud has a silver living.
Yes, indeed. The non-stop, 24 hr. supervision really gets me down sometimes. I tend to avoid getting sitters because it's so much work to bring them up to speed. I think I've gotten a sitter twice in the last year. The silver lining is what keeps me going!
RE: Sensory Seekers - LAC1961 - 07-26-2012
I wrote an email to our therapist and asked her to give us instruction in writing as we were feeling overwhelmed. She took a few minutes before therapy this past Monday and explained Ellie's diagnosis and therapy in more detail. She asked us to give her about 40 minutes of the hour with Ellie alone, then she brought us in the last 15 minutes to show us what they had worked on and added one home exercise, which she showed us how to do. I'm so glad I told her how we were feeling and thankful for the way she responded.
Some encouragements: 1. She licked food off her upper lip the other morning, which may seem like nothing, but she has never before even noticed when she had food on her face, and in addition could not even make her tongue touch her upper lip, let alone lick above the lip. 2. Due to a behavioral technique given by the therapist, screaming and yelling in the house has nearly ceased. 3. She's letting me brush her hair without having a fit if she holds a heavy doll while I brush.
One discouragement: She had her annual evaluation at the craniofacial clinic at the children's medical center (she has a minor cleft palate which they check annually), where about 7 doctors see her over the course of 1-2 hours. I asked if they would add a neurologist to the list since she was recently diagnosed with SPD. The speech pathologist said, "Let me be honest. Neurologists are all about the science, and SPD isn't very scientific, so if we did call one in, they probably wouldn't be very supportive. Alternatively, I recommend you have a neuropsych eval done when she's six or seven to evaluate any neuro delays." Not very scientific? How ignorant can doctors be? Fortunately, after what I've read in books, articles and on this forum, I wasn't terribly surprised by her reply. How are the rest of you doing?