Is there a tribe for kids with sensory processing disorder? - Mothering Forums
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#1 of 25 Old 03-08-2009, 12:02 AM - Thread Starter
 
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That title pretty much said it all! I'm looking for other parents of kids with sensory processing disorder (SPD).

My DS is sensory seeking and I'm looking for others who could shed some light on the situation.

Thanks!
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#2 of 25 Old 03-11-2009, 12:42 AM
 
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I'm going to move you over to Special Needs Parenting. I've gotten great advice there!

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#3 of 25 Old 03-11-2009, 06:01 PM
 
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There are a bunch of us here. Any specific thing you're interested in hearing about?

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#4 of 25 Old 03-11-2009, 06:14 PM
 
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I've got a seeker - I'd love to help you out! What would you like to know?

Also, welcome to the Special Needs forum!

Martha

ETA looks like our guys are around the same age - DS1 was born at the end of May.
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#5 of 25 Old 03-11-2009, 08:00 PM
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HI and welcome! I have a son who is a sensory seeker; we just started OT about 3 weeks ago. He also has ADHD and an expressive language disorder. Red-flagged for dyslexia as well. I would love to communicate with other sensory seeker parents too!
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#6 of 25 Old 03-11-2009, 08:42 PM
 
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6y DD1 is a sensory seeker and dyslexic. I saw the poster ahead of me has a DS who is on the path there as well.

There is no way to happiness, happiness is the way.
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#7 of 25 Old 03-11-2009, 09:28 PM
 
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Hey there! I have 2 kids w/ it and have it, myself!

 upsidedown.gif  Please see my Community Profile! energy.gif blogging.jpg about Asperger's Syndrome!

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#8 of 25 Old 03-14-2009, 12:00 AM
 
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I don't think my ds has sensory processing disorder but he has some sensory issues....he is turning 3 soon and the books on the disorder don't say very much about toddler years. Anyone read any good books for infant/toddler years?
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#9 of 25 Old 03-15-2009, 08:08 PM
 
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I also have a ds that is 2 with pdd nos and lots of sensory issues. He is a seeker as well. We do lots of deep pressure excersises with balls, scooter boards, rolling pins, brushing. Lots of good books. Anything specific?
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#10 of 25 Old 03-17-2009, 01:30 AM
 
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I have 2, possibly 3, girls with it. My oldest is mostly a seeker, with some defensiveness. My younger is mostly defensive with a few seeking behaviors. My baby is showing some signs of defensiveness. My oldest started out defensive. Sometimes it's all very difficult for me. We are dealing with a lot of behavior and discipline issues. I could totally use some advice on how to handle my children at other people's homes and in public.

Jessica, mama to Emma, 7, Mattie, 5.5 and Lilly, 3 and someone new this Halloween-ish.

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#11 of 25 Old 03-17-2009, 02:00 AM
 
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My DS is now 5.5 and was diagnosed with moderate SPD at age 3.5. He had 6 months of OT which helped a lot and taught me a lot about how to help him. He has a mix of sensory seeking (proprioceptive and other movement senses and sight) and sensory avoiding (sounds, tastes, clothing, and smells). We sought professional help because it was damaging his peer relationships and causing difficulties within his preschool classroom as well as preventing him participation in certain activities he enjoyed.

He is now halfway through a successful Kindergarten year. He still struggles at times but we found a school with strong support for his needs.

Kris wife to Stew and mom to Joey 8/03 who cares for , 2 frogs and a worm
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#12 of 25 Old 03-17-2009, 02:18 AM
 
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Quote:
Originally Posted by JoyofBirth View Post
I have 2, possibly 3, girls with it. My oldest is mostly a seeker, with some defensiveness. My younger is mostly defensive with a few seeking behaviors. My baby is showing some signs of defensiveness. My oldest started out defensive. Sometimes it's all very difficult for me. We are dealing with a lot of behavior and discipline issues. I could totally use some advice on how to handle my children at other people's homes and in public.
Have you read The Out-of-Sync Child yet? Once you know the specific area of seeking and defensiveness you can start to observe triggers. Keep a journal of good moments and difficult moments and then analyze what led up to those moments. Recognizing negative triggers and getting clear of them is key. It helped us to learn to do joint compressions (best if a professional demonstrates for you, but they are easy to do) as a calming method.

In terms of discipline and behavior...I found I had to be even more proactive than the average parent about food and sleep. I also had to lay clear expectations right before we entered a social setting about how to act then I had to vigilant to the noise and activity levels and leave before it became overwhelming for him. We sometimes had a secret signal he could use if things became too noisy for him. Or I had to be creative when walking became an overwhelming chore for him (marching is a great way to get a sensory seeking child the sensory input they need to not collapse in a heap on the floor when trying to walk calmly). Don't punish the child for reacting to a trigger that has overwhelmed or underwhelmed their senses. Try instead to predict and compensate or give them an alternative behavior that meets their sensory needs.

And it does get easier as they learn to recognize the triggers on their own as they get older.

Kris wife to Stew and mom to Joey 8/03 who cares for , 2 frogs and a worm
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#13 of 25 Old 03-18-2009, 03:10 PM
 
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DS - 19m - has been referred to an OT for an eval for SPD, and is being evaluated for speech/hearing issues as well. I'm still learning a lot about this, and am going to get The Out of Sync Child this weekend. I know that SPD often misdiagnosed as ADHD, which is a concern since DH has it as well. I also know that it's not usually diagnosed until around 5 or older. He craves touching things, and puts everything in his mouth. He has an extremely high pain tolerance which concerns me. He feel on the pavement yesterday and didn't cry. Later I saw how scratched up his knees were and was quite surprised that he didn't even fuss.

I talked to a psychologist yesterday who spoke at my mom's group (MOPS). I told her that I've been looking for tools for to work with him, and keep hitting walls. So many people online tell me that he's a normal toddler, but his activity level combined with other behavior is not normal. She understood me, and made me feel better about my 'mommy skills', and validated my concerns.

I'm really wanting to talk to other mamas on how to teach/discipline DS effectively.
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#14 of 25 Old 04-05-2009, 03:21 PM
 
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I would also suggest "The Out Of Synch Child Has Fun"....because it follows "The Out Of Synch Child", but gives lots of good ideas for activities you can do once you start to identify problems that your child is having!!

My dd has severe SPD, among other problems....and receives ST, OT, PT, and SEIT through our county Early Intervention Program.
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#15 of 25 Old 04-06-2009, 09:58 PM
 
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Subbing... an OT mentioned some signs of sensory issues with our oldest and from what I've read I am also concerned. We have an assessment coming up in a couple of weeks...

Mama to my spirited J, and L, my homebirth: baby especially DTaP, MMR (family vax injuries)
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#16 of 25 Old 04-06-2009, 10:10 PM
 
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I have a sensory seeking 2 year old. He's been doing really well lately and has gone from OT every 2 weeks, to OT quarterly. I love OT though and credit it with helping him get to where he is now.

Oh and the Out of Sync Child Has Fun is a great book with lots of ideas on helping the child meet his or her needs in an appropriate way. We use several of the ideas in the book daily.

Mama of three.
 
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#17 of 25 Old 04-07-2009, 12:54 PM
 
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I just picked up that book - LOVE the activities in it. The original Out of Sync book was out at B&N and am waiting for it to arrive.

We have an OT coming to evaluate DS.
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#18 of 25 Old 04-18-2009, 02:44 PM
 
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Both of my girls have sensory issues, and I am blogging as a way to process and record our journey with it. I really wish I would have got earlier intervention for my older dd. She just started OT and my younger dd starts next month. Both girls have a really hard time with clothing and shoes, dd1 has issues with bright lights, loud noises, hates fast or unexpected movement. Dd2 loves fast movement and her only hypersensitivity besides clothing is that her nose is really sensitive.

~Beth, mama to two amazing girls, ages 12 and 6~

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#19 of 25 Old 04-18-2009, 04:23 PM
 
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just subbing for now.
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#20 of 25 Old 04-18-2009, 05:12 PM
 
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Our almost 3yod son has SPD. He is mostly a seeker but is defensive to sounds and anything touching his hands and feet. He will spend the day crashing into things only to turn around and accidentally touch something squishy and completely break down. The biggest help is to have a "safe" area that he can retreat to when the noise/lights/movement gets to much for him. For now it is a cozy corner behind a chair but dh is working on building him a tower in the corner of his bedroom that he can escape to.
I read a ton of books on the subject when we first found out, but found Raising a Sensory Smart Child by Lindsey Biel and Nancy Peske to be the most helpful from a parenting point of view. They do a really good job at explaining why they do the things they do at therapy and how it helps them. Ds has been going to Occupational Therapy since October of last year and speech therapy since January of this year. There has not been much change in his behavior as of yet but it has helped to understand why he gets upset so much and how to help him. I recently tried to get a support group started at the therapist office but had not success, most people get their child's therapy at the public school and since we homeschool their just wasn't a big enough demographic. I really look forward to talking and sharing ideas with you ladies, I know I for one really need the help/advice, it's like learning to parent all over again.

Loved wife to JT and grateful mother to M (dd age 13) L (dd age 10) T (ds age 6) A (ds age 4) E (dd age 2) and C & S (twin boys born 10/13/10)
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#21 of 25 Old 04-19-2009, 12:17 AM
 
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hello, my son is a sensory seeker, and my daughter is getting evaluated for SPD as well.
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#22 of 25 Old 04-19-2009, 10:53 AM
 
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I'm still struggling to get a meaningful DX for my son, but it's some kind of SPD. He is almost five and will be homeschooled for kindy, because he freaks out entirely in a group learning situation.

Our big victory this year has been getting him to function in a small OT group led by and OT and a SLP. He is being evaluated for individual OT this week, which will hopefully result in a year of weekly appointments with somebody who is trained to address his agraphia (because I suck at providing this therapy). The group OT is helping him to deal with crosstalk, turn-taking, following directions amidst distraction etc., and I'm grateful for that, but nothing so far has addressed his freak-out-in-a-crowd problem.

The waiting list for the "good" developmental ped is 8 months long. If I'm lucky, we might get to see him before the end of 2009. I also have the joy of fighting the school district this year to get his therapies covered, which should be particularly awesome as he will not be attending school.

But we get by He is much happier now than he was a year ago - less stimming, less acting out, more fun for non-parents to be around...
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#23 of 25 Old 04-19-2009, 03:55 PM
 
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Subbing too! My DS is a seeker (but auditory avoider). We've been having a rather difficult time of it lately, he's working through something I think. Keeping him active, and brushing often, seems to be helping.
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#24 of 25 Old 04-24-2009, 11:02 PM
 
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subbing

Aimee + Scott = Theodore Roosevelt (11/05) and 23 months later Charles Abraham (10/07)....praying for a little sister; the search starts May 2014
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#25 of 25 Old 04-25-2009, 12:28 AM
 
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Hello!

I have a child that I suspect has some SPD issues. Here's why, and tell me what you think, please.

*SEVERE reaction to being moved. Like if her Dad goes to scoop her up, and she is not prepared for it; she totaly looses it...Freaks out completely! Scoot a bench she is sitting on ever so slightly...flips out.

*From the time she could sit up, she would have the episodes of sitting in the floor with a drink or a toy, while she presses the object in, and pushes her feet out in a rhythmic type of motion. Hard to explain it, but she zoned out. She would respond, but really wanted to just be left alone. She still does this occasionally, but not as much.

*Absolutely can NOT handle loud noises. The toilets that flush automatically were traumatic for her until about a year ago. She has to be "brave" to actually sit on one.

*Itchy clothes are not an option.

*Becomes very clingy and disturbed in settings with strangers and new places. At the age of three, her one year old sister would rush to the indoor playground, and leave her in the dust. She would not climb past the second step. Now, she has dramatically improved in this area.

Now, in my (slightly biased) opinion, she is beyond bright. She is four years old, and can launch a browser, take herself to the websites that she's allowed to visit, and needs little to no help navigating around the site....games, starfall, etc. She knew all of the letters and sounds at three, and is just amazingly smart. Letters and animals are her friends!

Do any of these behaviors seem odd? Familiar??

Thanks!
Rebecca
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