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question, Has anyone seen this?
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bioandadopt Offline
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Posts: 1
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#1
question, Has anyone seen this?

I have a three YO daughter that was adopted at birth. She was exposed to drugs prenatally. She has had sensory issues since birth ex. screamed while riding in car, had to be held at all times, screams in grocery store, malls etc. , totally falls apart with to much sensory input. When things are OK she is perfectly fine(well fine for a grumpy, head strong child) but she is like a light switch from fine one minute to uncontrollable fit the next. Outside people would never think she has any problems, she is in preschool for three hours a day three days a week and teacher says shes great. Ped sees great child and even first OT evaluation they saw a perfect child but next evaluation they bombarded her with sensory input and she tuned into a different child she became almost nonfunctional ex. no eye contact, extreme fatigue, zoning out for 20 seconds or so, it was so odd to see her turn to a child I had never seen, it reminded me of a child with autism. Usually at home she would just throw a screaming fit after that much sensory input. OT feels she definitely could use therapy but we are battling insurance. Insurance says take her Psychiatry but psychiatry says they don't know what to do because she is great at their quiet, calm office. They seem puzzled although they are willing to help if they knew what to do.

Does anyone else have a child that like this? I dont even tell some people she has sensory issues because they only see her during her happy, smart outgoing, social times.Huh
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revmom Offline
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#2
RE: question, Has anyone seen this?

I can't relate to the overloaded reaction because my son seeks all the sensory input he can get. But I sure sympathize with your frustration with the outside world. My son is wonderful but just a little hyper in most places, I can't tell you how many times I have been told "he's just being a boy" I hesitate on a regular basis to tell people (including a couple of family members) because they tell me he is just a little active. It is a real struggle when we know our children are not just like everyone else but they look like everyone else.
I also am right there with you in arguing with insurance - it's why we are not receiving services right now.... Good Luck
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Marci Offline
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Posts: 88
Joined: Jul 2011
#3
RE: question, Has anyone seen this?

Give my kid food dyes, particularly red #40, and he goes from 0 to 60 in 5 seconds flat. Instant screaming maniac. He also has multiple food and environmental allergies. I've learned that there is a direct link between his diet and his mind: wrong food, zero coping skills.

Try keeping a food diary, writing down everything - food, medicine, skin care products - and see if you can find a pattern. Particularly look for reactions to gluten, dairy or soy. Consider a rotation diet - eliminate certain foods for a week, watch for changes, then reintroduce foods. Change to a hypoallergenic laundry detergent, don't use fabric softener, don't use bubble bath or shampoo with dyes; all these changes have made a difference around here.

This isn't easy, but all of this made major differences in our lives.
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tarcol Offline
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Posts: 1
Joined: Nov 2011
#4
RE: question, Has anyone seen this?

My daughter will be 4 next month we have done some OT. I don't like telling people to much about her sensory issues cuz they look at me like I'm crazy. First of all the general public is not educated about it. Second these kids try to hold it together in front of other people cuz they don't want to be different. Even family don't see it if they are not around them alot. My daughters huge probably is clothes. Get dress to go anywhere is sooooo stressful for her and me. There are days I just start crying from the stress of it. I have to be to work she has to go to school and everything in her closet hurts. The worst is when people tell me she is trying to control me. Yes is some toddler behavior but dont tell me this poor child who loves to go to the park and play outside would rather some days stay home and be naked cuz she is so stressed and anxious to put clothes on. They dont see what we see.





(11-18-2011, 11:44 AM)bioandadopt Wrote: I have a three YO daughter that was adopted at birth. She was exposed to drugs prenatally. She has had sensory issues since birth ex. screamed while riding in car, had to be held at all times, screams in grocery store, malls etc. , totally falls apart with to much sensory input. When things are OK she is perfectly fine(well fine for a grumpy, head strong child) but she is like a light switch from fine one minute to uncontrollable fit the next. Outside people would never think she has any problems, she is in preschool for three hours a day three days a week and teacher says shes great. Ped sees great child and even first OT evaluation they saw a perfect child but next evaluation they bombarded her with sensory input and she tuned into a different child she became almost nonfunctional ex. no eye contact, extreme fatigue, zoning out for 20 seconds or so, it was so odd to see her turn to a child I had never seen, it reminded me of a child with autism. Usually at home she would just throw a screaming fit after that much sensory input. OT feels she definitely could use therapy but we are battling insurance. Insurance says take her Psychiatry but psychiatry says they don't know what to do because she is great at their quiet, calm office. They seem puzzled although they are willing to help if they knew what to do.

Does anyone else have a child that like this? I dont even tell some people she has sensory issues because they only see her during her happy, smart outgoing, social times.Huh

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beck7422 Offline
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Posts: 342
Joined: Jun 2010
#5
RE: question, Has anyone seen this?

I am an adult with SPD with lots of problems with clothes. I will become non-functional with certain materials touching my skin. They hurt so much that they overwhelm my mind and my body just shuts down until someone else can get the "bad" clothes off me. People may think I am spoiled, but *bleep* them. If it isn't 100% cotton then I can't do anything, so I pay extra to make sure all my clothes and undergarments are truly 100% cotton.

My skin is so sensitive that just with a light touch of my fingers (less than 5 seconds) I can tell you almost the exact composition of any material just one the types of pain I am in and the magnitude of the pain. The only problem with this is my fingers swell up and hurt if I do this too much. So when I clothes shop I try to only test the clothes that look the most like 100% cotton, since I only get 10 mistakes (fingers) before I have to stop looking for clothes. Once a finger has a reaction it is useless for further cloth testing.

Sometimes clothing labels say one thing, but my fingers always end up being right.

Adults definitely thought my parents were spoiling me when I was a child. At least I wasn't a clothes horse so although my clothes were expensive I didn't want a ton of new clothes all the time.

Shoes were a different expensive nightmare, although they are even worse to shop for as an adult than they were as a child. The wrong shoe goes on my foot and I have to keep myself from screaming from the pain in public. I am 34 years old and that is very embarrassing. What is the most likely though is I put the shoes on and then I become completely non-responsive. I can't even blink until someone else takes off the shoe.
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Barbara Offline
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Posts: 1
Joined: Nov 2011
#6
RE: question, Has anyone seen this?

(11-18-2011, 11:44 AM)bioandadopt Wrote: I have a three YO daughter that was adopted at birth. She was exposed to drugs prenatally. She has had sensory issues since birth ex. screamed while riding in car, had to be held at all times, screams in grocery store, malls etc. , totally falls apart with to much sensory input. When things are OK she is perfectly fine(well fine for a grumpy, head strong child) but she is like a light switch from fine one minute to uncontrollable fit the next. Outside people would never think she has any problems, she is in preschool for three hours a day three days a week and teacher says shes great. Ped sees great child and even first OT evaluation they saw a perfect child but next evaluation they bombarded her with sensory input and she tuned into a different child she became almost nonfunctional ex. no eye contact, extreme fatigue, zoning out for 20 seconds or so, it was so odd to see her turn to a child I had never seen, it reminded me of a child with autism. Usually at home she would just throw a screaming fit after that much sensory input. OT feels she definitely could use therapy but we are battling insurance. Insurance says take her Psychiatry but psychiatry says they don't know what to do because she is great at their quiet, calm office. They seem puzzled although they are willing to help if they knew what to do.

Does anyone else have a child that like this? I dont even tell some people she has sensory issues because they only see her during her happy, smart outgoing, social times.Huh

No one has any idea that my daughter is suffering from SPD. She holds it together in school. She is comfortable enough with her parents to let us know how she really feels and tries to hold it together for everyone else. So we get the brunt of it at home. One minute she is a very happy, friendly kid, the next she has such a strong reaction to touch, clothes or she is just soo uncomfortable with her body. Its like turning on a switch or something and its not consistent!
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Spdmom Offline
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Posts: 5
Joined: Nov 2011
#7
RE: question, Has anyone seen this?

My 3 year old is the exact same. She just started school with an IEP because of her speech issues and they included her SPD behaviors and she started school and is one of the most well behaved kids in class. They think we are crazy! But when she gets home she totally lets loose. Our behavior therapist actually said it is like she has a switch to turn it off and on!
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BusyMum Offline
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Posts: 53
Joined: May 2010
#8
RE: question, Has anyone seen this?

Lots of children with sensory issues hold it together and then fall apart the instant they get home - it's about feeling safe. "Out there" in the world they are children who are aware that other people judge, including their friends, and they are not going to expose themselves to that. At home though they are safe to lose the plot and let all that built up tension out. So in one way it's a good thing, you have created a safe place for her at home and in your relationship... and it's really really hard for you (and her) to cope with. The best suggestion is to try and find those things that she can do to calm and regulate herself, it might be swinging or bouncing or a warm bath.. easy to say I know but if she can learn to help herself then it can be easier for you all.

Good luck!
(This post was last modified: 12-03-2011, 08:18 AM by BusyMum.)
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Sirena Offline
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Posts: 9
Joined: Nov 2012
#9
RE: question, Has anyone seen this?

You've described my daughter! She is also adopted-less than 2 months ago and it wasn't obvious at first what she is up against. We have also noticed that she screams more with me than my husband--but I think that is partly because she feels more safe emotionally with me. She does get overwhelmed with being out and about (grocery store, department store) and sometimes the car. A wet diaper can cause a total meltdown, but we are working on the communication skills. The screaming is the worst for me and the family-a true the world is coming to an end shrieking. Cool wipes, face washing, and hair washing are rough too. Going to sleep was problematic but is better with a weighted blanket and Dad doing the actual putting to bed.
Sirena
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Jaffa Offline
Regular

Posts: 112
Joined: Oct 2011
#10
RE: question, Has anyone seen this?

I can sympathise too my son also adopted, he's 6 now went through all the screaming and hitting himself when little. Having bad nappies and screamed day and night. Now we have lots of clothing issues and meltdowns in a nano second. I have witnessed him having huge hissy fit on the doorstep and on seeing someone from his school it all disappeared. His school have never seen any meltdowns and he has been there since he was 3. It is me he usually falls apart with like he has been prodded with a cattle prod but is bit calmer with his brothers and sisters.
I too had everyone telling me he was just hyperactive and a "normal boy". Having four of my own is what made me persue it. His SENCO teacher in school is who dx what was wrong and got an appointment with OT.
I am grateful she did or could still be fighting.
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