Sensory Integration Disorder - Questions!
Keith posted a comment recently seeking recommendations from the urbanMamas community:
My wife and I (can I be an UrbanPapa?) (urbanMamas note: Keith, of course you are an urbanPapa!) have a 5 year old with SID, and are trying to navigate the process. Throughout, it can be very intense and we worry about getting the right supports for our son, we fret over the intensity of what we have to manage . . . we just want to get it right, and help him be happy.
He is in a Montessori school that has been a good fit for him, and since his referral from the ESD he is in program at Grout for kids with special needs. They're serving him for adaptive and social/emotional delays there.
We're doing OT at Therapy Solutions now for his SID. We have been happy there and are looking forward to working with Barbara Avila who does RDI (Relationship Development Intervention) training for parents. Challenge is that it's not covered by our insurance, and costly.
Questions:
- Who is doing the best OT work for SID locally? Is there anyone who is an expert, as opposed to "Yeah, we do 'some of that'"?
- Does anyone have any strategies to manage uber-tantrums? We feel our son's tantrums are anxiety driven, and when he goes there, he screams uncontrollably, kicks, hits, etc. Very little seems to work, short of restraining him, and just re-assuring him that we love him, we're there for him, etc. It's emotionally exhausting for all of us (including, we suspect, his 3 year old brother). Help. Any ideas?
- Has anyone done any RDI work and found it helpful for SID?
- Is there any support group going out there? We live in SE, Mt Tabor area.
Keith,
Our son has SID and we use Kirsti at Dornbecher's and have been very happy with her. In terms of the tantrums, have you ever tried a pressure vest or a weighted vest. If you are using MESD then they can get you one to try. They help our son stay calm, but when it comes to absolute melt downs many times we still have to just leave. We have learned with our son that sometimes he just needs to be by himself and scream for five minutes and then he recovers on his own. If we try to constantly intervene with his tantrums they can last for an hour or longer. Also, baths are extremely calming to him so somedays he gets five baths a day if he needs it. Also if you are interested in any alternative approaches our son sees Dr. Hillary Andrews ND, she is next to New Seasons in Sellwood. With all of the different types of therapy our son has done we have by far seen the most progress with her.
Lisa
Posted by: lisa | February 06, 2007 at 12:33 PM
Also, here is a previous discussion on finding support for families of children with SID:
http://urbanmamas.typepad.com/urbanmamas/2006/11/sensory_integra.html
Posted by: olivia | February 06, 2007 at 01:11 PM
Swindell's Resource Ctr @ Providence has speakers re: parenting children with disabilities; they also have a large resource library. http://www.providence.org/oregon/programs_and_services/childcenter/e15swindells.htm;
I just received an e-mail today re: new speaker: The Swindells Center Presents
Parenting Children with Disabilities
Guest speaker:
Shelley Bain, senior policy advisor, Oregon Insurance Division
Insurance 101 for Parents of
Children with Disabilities
Learn about public (Oregon Health Plan) and private insurance guidelines to gain a better understanding of how to get the best services for your child.
Tuesday, March 20 6:30 – 8 p.m.
Providence Portland Medical Center, Social Room 4805 NE Glisan Street, Portland, OR
Seating is limited and registration is required. This event is free to the public. To register or for additional information, please contact the Swindells Center at 503-215-2429, toll-free 800-833-8899 ext. 52429, or by email at swindells@providence.org.
The Jean Baton Swindells
Resource Center for Children
and Families connects families,
caregivers and friends of
children with disabilities with
information, education and
support — free of charge.
Posted by: amy | February 06, 2007 at 05:56 PM
Hi Keith,
Our son (almost 5) also has SID. We see a wonderful Occupational Therapist that uses the Floor Time Model (Dr. Stanley Greenberg). Our OT's name is Megan Coate at NW Pediatric Therapy. If you wish to speak with her to see if she might be a good fit for your son and your family, her number is (503) 232-3955. By the way, Dr. Greenburg has a book titled "The Child With Special Needs" which I got from the library and this has some helpful information. Not all of this applies to children with SID, but you may find some good information in the book.
Regarding local support groups, I would also be interested in learning if there are any in the area. I did find a helpful website http://www.kidfoundation.org/ They describe their mission as "Bringing sense to lives of childresn with SID." I noticed that there are groups around the country that meet, but unfortunately there is not one in the Portland area. They suggest checking back often as groups continue to form each month throughout the country.
Posted by: Karen | February 07, 2007 at 11:43 AM
Another "alternative" option is craniosacral therapy. One of the best known practitioners for kids in Portland is Carol Gray. Her contact info is at this site: http://www.tworiversmidwifery.com/Contact%20.html and more info about her practice is here: http://www.carolgray.net/carolgray/Craniosacral%20Therapy%20for%20Infants%20and%20Children.html
I wish you the best!
Posted by: Brooke Dempsey | February 08, 2007 at 10:26 AM
my son does not fit the bill entirely for SID, but he has some sensory integration issues. we've seen ot's at advanced pediatric therapies. 503-245-5639. lynette, sharon and sarah, are three ot's there, and i believe SID is all they do. their space is like the world's best jungle gym. my son is someone who needs a lot of big movement, spinning, joint compression, stuff like that. we installed a hanging rope ladder and rings into the ceiling of his bedroom, along with a little exercise trampoline, and when i start to see the early signals of melt down, i say, " looks like you are getting a little agitated, lets go swing on the ladder, or jump on the trampoline... " etc. rarely anymore do i have to restrain him, if i pay close attention and catch it before it gets to the point of no return. a good book, if you don't already know, is The Out-of-Sync Child Has Fun. it's all about activities to do with kids with SID. good luck.
Posted by: amy jo | February 09, 2007 at 10:57 PM
Hi,
My daughter is 7 and also is challenged by Sensory issues (SPD). She has come along way with the sensory issues, but the anxiety is still huge. We worked with Lynette Burke at Advanced Pediatric Therapies and had a terrific experience. I also found Lynette to be a great sounding board when issues came up over the years. Advanced Pediatric Therapies has info about support groups out their way. I am very interested if a support group were to form! I'm in the Laurelhurst area.
Posted by: Joanna | February 10, 2007 at 10:44 PM
I would recommend looking into social stories to help with the tantrums. Carol Gray has several books on the topic. Good luck!
Posted by: Caitlin | February 13, 2007 at 09:37 PM
I also highly recommend Carol Gray...
Also,a great book is The Out of Sync Child, and we also found that Montessori education was a great fit for our SID child!
Posted by: Emily | April 07, 2007 at 11:18 PM
SPD Portland Area Support Group Meeting (SPD = sensory processing disorder, kids with sensory challenges)
A newly formed support group for families with sensory challenges. Our second meeting is coming up (March 5th). If you are in the Portland metro area and know of a child with sensory challenges - please pass this information along.
Meeting Information:
Mark your calendars! Everyone's been talking about it - nutrition, enzymes, probiotics, neurotransmitters, food intolerances, gluten free, dairy free.... HELP! What do we do? How do we know what will work for MY child? How do we use these things to help our kids? What do we buy? How much do we give? Where do we start? Where do we get this stuff? What do we do!
Well, come find out. Dr. Sarah McAllister's here! A Pediatric Naturopath in Portland who can answer our questions - and more importantly, help our kids. Come find out all the practical information that can help your family daily.
March 5th, Thursday
7-8:30 pm
Advanced Pediatric Therapies
4444 SW Multnomah Blvd, Portland
fine print:
be prepared to stay later than 8:30 - Dr. Sarah has agreed to stay later to answer questions (Thanks Dr. Sarah!)
Dr. Sarah can answer a lot of practical questions - she lives the life and is a great cook!
Remember, no kids at meetings
If you haven't been to a meeting, yet - No Worries! Low key, great time for sharing & learning, & hanging out with others who understand sensory challenges. And, Advanced Pediatric Therapies has a great sensory gym - if you haven't seen it, it's worth checking out.
Special thanks to Advanced Pediatric Therapies for donating meeting space and for Lynette Burke's time for opening/closing APT for us!
See you March 5th!
Teresa Denney (spdportlandoregon, tdenney24@verizon.net)
P.S. Help spread the word - send folks the link to the yahoo messageboard site, post on other messageboards. Let's help our kids, by starting the conversation.
Posted by: Jennifer | February 26, 2009 at 01:52 PM
Our son was diagnosed with SPD a little over a year ago. We went thru occupation therapy for a few months and saw improvement, while we learned a lot. Insurance wasn't covering enough so we turned our garage into a therapy gym with matted floor, swings, things to hang from, trampoline & other resources.
We've heard wonderful things about the Artz Cetner and will be taking him there soon. I believe they're in SW Portland.
He's seen Dr Sarah McAllister as well and we're very happy with her. She's helping us sort through the neurological side of things through diet, supplements and amino acids. It's work, but if it helps him better handle days at school, parties and social events, and sleep better, then it's totally worth all the time and effort.
Posted by: Gina | January 14, 2010 at 02:37 PM
We suspect our 3 year old has SID. However, Kaiser does not seem to do any diagnosis/testing/referrals. Where do we start? What resources are available and how costly are they when our insurance won't cover them? Does traditional medicine even recognize that SID exists or is Kaiser just behind?
Posted by: A Mom | March 28, 2011 at 09:27 PM
Sensory Integration Disorder - I am hoping someone will see this even though it is an old thread, as there are no recent threads on the topic. If not, can the moderators ask the question I posted on March 28 for me? Thank you so much.
Posted by: A Mom | May 02, 2011 at 09:05 PM
Our son goes to see Lisa Porter @ Sensory Kids OT and she is fabulous. Our son looks forward to going there everytime. She has given us great ideas of things to do at home and has a great approach with kids.
Posted by: Nysa | May 03, 2011 at 01:28 PM
Sensory integration is a normal, neurological, developmental process which begins in the womb and continues throughout one's life. Although, it is important to note, the most influential developmental time is in the first seven years of life. Sensory processing is the process by which our brain takes in sensory input and interprets this information for use.
Posted by: Sensory processing disorder | May 11, 2011 at 11:54 PM
If anyone knows of a current support group in either Portland Area or in eastern oregon , any info would be greatly appreciated.
Posted by: java | March 04, 2013 at 10:56 AM