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What if this was YOUR child / what would you want me to do?

by ANONYMOUS
(FLORIDA)

I'm also brainstorming a plan to provide continued services for one of my little ones (preschool) with SPD. He just got a private diagnosis Friday! I'm tempted to push for ADHD label, just to get continued services. In Florida, his Developmental Delay label expires when he turns 6. No IEP or services/accommodations after, unless there's a recognized label. Is there a better way? With ADHD is he only able to get a 504? With a 504, can he still get OT? I know a 504 has fewer legal rights... would/could that impact him? Is a 504 "good enough" to get him what he needs (theoretically)?

My next question is: he's in constant motion, mostly bouncing... to the point where it's very disruptive to the routine and the environment that I work so hard to create for my other children with a variety special needs. He starts bouncing, running, yelling... and before you know it, the other children join in (what a powerful reinforcer for all). He seems to only get more active the more bouncing/active he gets. If he's bouncing to fulfill his need to self regulate, why doesn't he progress to the calm alert state? I have provided acceptable times/places to bounce and I don't see much difference... the bouncing around the room hasn't decreased; except when I make him/time out :( . I hate putting him in time out, even as a last resort. I realize I need the time out, but that's not an option. I tried to teach him to "take a break" on a bean bag chair. He still saw/verbalized it as a "time out!"

He's cognitively typical/possibly gifted. Definitely academically bored in my special needs classroom. He is the brightest, most adorable, happy kid you ever met... with great self esteem so far. I want to give the next teacher more tools than just time out. When he starts bouncing, I remind him "we bounce on the trampoline, on the Hippity Hop ball, outside, etc." I play classical music throughout the day. I provide a variety of sensory activities often, for all of the children. I'm trying to implement a sensory diet (weighted turtle, weighted backpack, ankle weights, beanbag blanket for nap time, lots of bear hugs, fidgets, wiggle seats, etc.), but don't really have the expertise. I have done hours and hours AND HOURS of research and reading and can't seem to meet his needs while meeting the needs of my other children. Many would say that my other children are suffering, because the majority of my time and energy are being spent on this one child.

Please, Please, Please give me ideas. I only have seven more months... and then he goes to someone who may have never heard of SPD.



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What if this was YOUR child / what would you want me to do?

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Nov 10, 2009
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sharing your frustration
by: Anonymous

I am a pre-k teacher who is trying to fight the public school battle for a set of twins in my class who are both diagnosed with SPD. Just wanted to say that I was glad to hear that there are others out there who are advocating for these children. I just want to SCREAM sometimes when others talk about their behavior but don't want to do anything to help them. Keep up the good work!

Nov 03, 2009
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To add on to my earlier comment
by: Anonymous

I am the parent who talked about the private diagnosis... and I wanted to chime in... we use a weighted vest at school and it seems to be helping and we use a "Sandwich" activity at night that is pressing him between pillow and we all take turns being the 'meat' He is always a condiment or the bread but it is similar to the "squishing activity" Probably difficult to do at school ... but there are pieces of equipment that you can purchase that literally the child gets to roll through boulders. It is in the $500 range but I think it would be very durable and serve the Squishing sensation.

Oct 28, 2009
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is this typical?
by: father of four

It does sounds pretty familiar to me, but our son is older now and I suspect was not quite as "sensory seeking". We are yet to try a weighted vest, but have had some success with ankle weights and squashing under blankets (albeit not at school). Getting an assessment and recommendations from an experienced and knowledgeable OT were essential to setting us on the right path. Therapeutic Listening seems to be helping him (at home) and music can be calming when nothing else works for our son. It might also be worth thinking about a mini trampoline or gym ball that he can bounce on without being too disruptive. Do you know what is working well at home? I guess it's a case of working out what is needed and works for him and being prepared to change it as his needs change (which they seem to do often for us). Talk about a roller-coaster!

Oct 27, 2009
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Thanks! I'm reading :-)
by: Anonymous in Florida

Thank you all for your support. Just wanted you to know that I am and will be reading; and looking forward to your responses. what about a weighted vest? What can I do to get him to calm down when he just seems to keep bouncing? He also has a couple 'mild obsessions' - lights and fans. Is this common in SPD or something else? I will be ordering some of the recommended books on Amazon. I read "The Out of Sync Child" over the summer and just finished a book called "Is it Sensory or is it Behavior?" I learn a little bit more with every resource.

Oct 27, 2009
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what would i want you to do?
by: father of four

Really, I am just so impressed that you have asked this question to begin with. To me it sounds like you are doing what I would want and I wish there were more educators like you in the system, particularly in the early years. Firstly recognizing that he is unique and has specialized needs, secondly trying to find ways to accommodate those in the classroom and finally taking the time to find out about other strategies that might help. Timeout = very bad :(. Beyond that, there are some things that are working for us and might help.

Our school has just agreed to trial therapeutic brushing, is allowing him to chew in the classroom, making sure he gets plenty of outside play and is listening to our suggestions for how to teach him and modify the environment e.g. making sure he does not have too many distractions. Having an orderly routine, but giving him some flexibility within this certainly seems to have helped over the years. The Out of Sync Child and Including SI for Parents - Sensory integration strategies for parents at home and school are worth reading too. All the very best. I really commend you for your approach to this.

Oct 26, 2009
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what's in a label???
by: Anonymous

We also received a "private diagnosis" of SPD. (outside of the school) Our son was diagnosed with SPD but the physician wrote Apraxia on the the referral sheet so that insurance co. would recognize the need for OT. The school has recognized SPD as a disorder requiring an IEP and OT. His plan of care includes Sensory Integration for SPD both with the IEP as well as with the Apraxia label given by his physician. It is not an exact label but it is more accurate than ADAH and will allow you to receive the appropriate help! Good Luck - God Bless!!!

Oct 25, 2009
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Florida
by: Anonymous

Hi Florida,
There are a few books you need to read: either from a library through online requesting these books or go to your bookstore and read.

1. The EVERYTHING PARENT'S GUIDE TO SENSORY INTEGRATION DISORDER by Terri Mauro (www.everything.com) (IEP, right diagnosis,understand treatments, and advocate for your child)

2. SPD answerbook Practical Answers to the Top 250 Questions Parents Ask Tara Delaney,MS, OTR/L

3. Too loud too bright too fast too tight by Haron heller, PH.D very good

4. There is a large book about IEP and codes and labling our children.

5. Arnie and his school tools Simple Sensory Solutions That Build Success by Jennifer Veenendall
(This sounds like your little guy and somethings he needs at home / at school)

Remember crunchy foods (too alert) chewy foods / sucking on chew tools, suckers, thru straws are (calming). He may need to crash into pillows/ mattress pads to regulate his body. Calming music before, during school, anytime. A tent to calm down in or call it his hide out. Put pillows, stuff animals, polyester fleece blanket inside (calming). Timeouts (no good) have him have time ins which he is telling you I need to regulate my body now ( carry heavy objects from one part of room to another, help hand out papers, clean up, erase off black board. Have you used T seats? two pieces of wood in a form of a T. I use this for balance, constration to music. How about a rubber round or wedge cushion so he can use on a chair or circle time, he can wiggle and move in his seat but not move around in the classroom.

How about Montessori School they tend to move around in classroom more freely than public schools and tend to learn what works for them and how they can calm and alert themselves. Just a suggestion. I have a child who is 7 and has SPD and we are trying the IEP. Just be assertive, because the school is not going to say come with open arms. We do the work, research, and ask question and make the final decision not school.
good luck and please email and let us know what you did.
Thank you
Fish


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