My son has been diagnosed with spd but a doctor had an arguement with me that it is a medical term...

by Jenn
(Lyndonville, Ny, US)

I am so confused right now. My six year old son has so many sensory needs. I took him to the OTR to have him diagnosed with Sensory Processing Disorder. She did diagnose him but she felt that he needed further evaluating for behaviors to know if the behaviors are being caused by the sensory or if the behaviors are coming from another area. I took him to the center today and of course the doctors statement was that this is not a medical term, it is just a term that OT's like to throw around. My sons behaviors have caused a real issue for him to further any educational needs.




- continually seeking gross movement
-always thirsty
- eats two bites of his food, says he is full and has to put it in the fridge and he is back to the fridge 20 minutes later because he says his belly is still hungry
- will have a fit if his routen is changed
- would rather play by himself than with others.
- hugging animals to tight
- didnt cry with shots
- hates to be hugged- feels like he cant breath
- hates tags on clothes and seems on socks, yet doesnt care if his clothes are twisted or even on backwards.
- he will cover his ears and yell if he hears a loud sound.
-very impulsive
- unable to calm his body down after any physical activity, it almost seems like solar power. The more activity the more energy he develops
-hates weighted blankets, vests, lap turtles
- hates to write because he says "birdy fingers hurt", the pencil is very uncomfortable to him.
-If he gets a drip of water on his shirt he must change.
-insists on wearing hate and gloves in the summer.
-can not cut with scissors
- very limited fine motor control
- avoids eye contact
- always breaking toys and other peoples belongings because he plays to ruff, not to be mean.
- can verbalize a sentence but cant put it on paper unless he can copy it after someone else has writen it.
-


he is afraid of having the wrong answers so he will become upset

I feel like I could go on all day.There are so many other things on this list that he has. The problem I am having is that the doctor at the center told me that he doesnt have adhd, add, autism, aspergers.HE does have some anxiety with performance and the best diagnosis she could provide me with is Oppositional Defiant Disorder. Strictly because he has developed many avoidance tools and he is being defiant even though he is egar to please, doesnt argue with adults, is not revengeful or spiteful, doesnt not try to annoy people. It is the only reason they could come up with for the possible behaviors we are experiencing.

The biggest issues we are experiencing right now in school are him crawling on the floors, making animal noises, running around the room and of course when he sees letters put in front of him he starts covering his ears and making loud noises. He is starting to become aggressive with the more he is being pushed to work on his reading. At this point I am so confused and I have no idea where to find help.

We live in a very small town with no services. The nearest place to receive any help is about an hour away and that place cant seem to agree if we have one diagnosis or another. I almost feel like he is under responsive in some areas and other areas if he is offered what his body wants so badly he wont be able to calm himself back down. I have to ask how I can find an appropriate amount of certain activities to help his body calm down. He has finally started to be able to connect with some peers since he started the intuniv a couple of weeks ago but most of the kids in his class think he is weird or scary. He wants to be liked by them but he also needs it on his terms. He can only tolerate certain things. Any help at this point would be great!

Comments for My son has been diagnosed with spd but a doctor had an arguement with me that it is a medical term...

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Sep 26, 2014
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starstarstarstarstar 		Mind Eye Connection
by: David M

We took our 8 year son old who sounds similar to your child to Dr. Deborah Zelinsky, a neuro-optometrist, in Northbrook, Illinois. Although he had 20/20 vision she had him wear prism glasses with a slight tint during periods of learning at school. Within 3 months he went from the bottom of the class academically to the top of his grade. He now is taught as a gifted student. His socialization and sensory processing improved dramatically as did his athletic abilities. I cannot promise that this Doctor can help your child, but it is worth a try. Good luck! Her contact info is (847) 501-2020. www.mindeyeconnection.com
Mar 04, 2012
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starstarstarstarstar 		Really?
by: Anonymous

Doctors are not always right. I experienced this with many who told me that when my son who went mute after his six month vaccinations that it was just a fluke. Fast forward two and a half years of living my life in a slow hell knowing he had SPD with everyone around me including my own husband telling me there was nothing wrong with him and that infect maybe I should get some help myself! Save your son! Get a new doctor! People, if you know or doubt there maybe something different with your child I urge you to never give up. You have to be their voice and they deserve it!
Jun 22, 2011
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starstarstarstarstar 		Total Relief
by: Lisa

I have a 5 year old who was born 4 months premature and we were told he would most likely have behavioral problems. Our pediatrician who has followed us since birth doesnt want to put a label on him but thinks he could have aspergers with sensory issues. Every single thing you listed is what my son goes through. the drop of water on clothes, tags, food.... I was so glad to read your story. Even if the doctors wont 'label' a child doesnt mean something isn't there. Keep searching, as will I, and keep putting your progress/stories out there for others.
Thank you for sharing
Lisa
May 10, 2011
Rating
starstarstarstarstar 		Get a second opinion
by: Candy

I have a son with Pervasive Developmental Disorder on the Autism Spectrum. He is 3 has very similar behavior problems and sensory issues, though different from the severity of your child. I would definitely encourage you to get another opinion and ask for an MCHAT to be performed for your son to see if he meets the criteria for autism. He sound so much like my son's social impairments and sensory issues that interfere with his perception of the world and causes a lot of problems communicating with others. You can look at the autism books and websites to understand more about the testing and criteria to look for in your son. Try to find a developmental specialist physician who is experienced in diagnosing such children. You can ask your school district to perform the test too with a school phycologist. They can help steer you in the right direction. The sooner you know for sure the sooner you can receive the right treatments.
May 05, 2011
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starstarstarstarstar 		..in addition
by: Anonymous

Forgot to mention - two excellent activities for children with SPD are swimming and horse riding.

Our son has been having swimming lessons for about two years now. He started off not being able to put his face in the water. We overcame this by filling a washing up bowl with water, putting it on some towels on the floor, then getting him to put his goggles on and encouraging him to put his face in the water. It took a little time and lots of reassurance, but he eventually did it and then spent nearly an hour doing it over and over. It worked because he was in control. He was kneeling on the floor and could stop any time he wanted.

Now he can swim over 200 metres!

We have just started the horse riding. We take him once a week for a private lesson and he absolutely loves it. It gives great sensory feedback and there is also the emotional feedback that interacting with the animal gives.
Obviously these activities cost money. Our son receives Disability Allowance, which enables us to pay for these. But even messing about in the local public pool or seeing a horse at a petting zoo or local farm can be positive experiences for the sensory child.

Blue.
May 05, 2011
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starstarstarstarstar 		Anonymous
by: AJ

we have done the activity cards as well. we do them with the ot and at home on days that might be a little more challenging. one thing to remember though with that is that in doing that, you set them up for having a routine that won't be changed or interrupted.

we have been advised that once they are familiar with the cards and the process that that included to then let them pick the activities they want to do, but instead of letting them control the order and timing of it all, you as the parent do that part. this way you are also teaching some flexibility and with time they become more pliable. :)
May 05, 2011
Rating
starstarstarstarstar 		Keep fighting!
by: Bluebottle

Hi Jen. I could swear that you were describing my 7 year old son!! Most of the behaviours you listed are exactly what we have experienced.
We live in the UK, and SPD has hardly even been heard of here. We have had to battle all the way to get help.

One thing that made a huge difference to our sons behaviour was having a visual daily routine timetable.
It is a collection of picture cards, laid out to show exactly what he will be doing that day. For example, a typical school morning would show:

Free Time (do what he likes) - Breakfast - Sensory (exercises for his SPD) - Homework - Physio - Television - Teeth Brushed - Pyjamas off - Clothes on - School.

This was suggested to us by our local Autism Outreach Team and we saw the difference from day one. You must use it every day without fail if you start it.
We also have sensory exercises to do twice a day for 10-15 minutes. These are things like tug of war, bouncing on an exercise trampoline, balancing on a therapy ball.

Many of the unexplained behaviours may be linked to his SPD - for example, playing by himself could be because he cannot cope with the unpredictability of other children (noise, smells, physical contact etc). We have benefited from seeing a Clinical Psychologist. She has helped us to see how SPD could cause some of these behaviours.

Most of all, research, research, research. Knowledge is power, especially when dealing with medical 'processionals'. If you're not happy with what you are told, insist on a second, third, fourth opinion until a proper assessment is done. After that, if they say 'it's not Autism', you can say 'fine, what else could it be then?'.

I hope you get the help and support you need.

Blue.
May 04, 2011
Rating
starstarstarstarstar 		Utah
by: AJ

continued....

I would say that if you are not satisfied, keep searching, keep asking questions, keep reading, keep contacting specialists. I wish you could meet with my OT, she?s wonderful. She has been a wealth of resources and a sounding board for my concerns. I would be happy to share some of the things we have learned from her and benefited from meeting with her. (You can email me at astringham@hotmail.com)

It can be so difficult to know where the line is with behaviors that are just typical part of being a kid and pushing the limits and testing the boundaries (because all kids do it) and knowing whether there is a ?sensory? piece to the puzzle when the behaviors are out of bounds. And then how to handle or deal with it is a whole other ball game.

I dont know if youve read any of the books about this but there are some great ones with some helpful tips and ideas on how to help these kiddos learn tools and implement them so that they can learn to self modulate and regulate.

The Out-of-Sync Child (there are a couple books by the author of this book

No More Meltdowns: Positive Strategies for Managing and Preventing Out-Of-Control Behavior

The Sensory-Sensitive Child: Practical Solutions for Out-of-Bounds Behavior

Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with SensoryProcessing Issues

There are also some programs and therapies that can be implemented from home as well that we have found helpful. I can email those as well.
The positive part of all of this, is there are things that can be done to help. There are many of us in the same boat. We can learn from each other and support each other in our efforts. Also, your son is old enough to communicate with you which is so much better than when they were age 1 and 2 and screaming all time and couldn't tell ya a dang thing. :)

I think it's an important part of the process to talk to our children about how they are feeling and explore emotions and how their bodies feel and appropriate ways to deal with those emotions and feelings. Which of course I'm sure you are already aware of and sensitive to. I feel like there is so much more that I could write about what you have written but will wait to hear if any of this helps or gives any direction and whether you would like more.

Here though, are a few strategies/ideas: (happy to email more)

www.modelmekids.com
www.alertprogram.com
www.sandboxlearning.com

We have also made a sensory tool box which has been very helpful. Good luck!
May 04, 2011
Rating
starstarstarstarstar 		Utah
by: AJ

Jenn- I feel for your confusion and also sense your fierce desire to understand where your son is coming from and to get him some intervention. I swear, when the timing is right, I'm going to get involved in this field. But for now, I too have a 5 year old son with spd. He given a diagnosis a couple of years ago and we have been working with an OT ever since. At a point, I questioned whether he was on the autism spectrum or had add or adhd, but the sensory issues description/symptoms fit him mush more than all the other labels.

I always knew my son had some issues from a very young age, but it took me a while to pin point exactly what it was. And I'm not even sure I?m to the end of understanding all of it. As you know, you can think you've got something figured out and then it can change and these kids can be so inconsistent with what works from day to day or behaviors and reactions to things can be ever changing. That's the effect of not being about to regulate input in an organized way and being wired just a bit differently neurologically.
My son has many of these struggles you have listed about your son. And some of them he is just the opposite which I find fascinating. The struggles with coordination and gross motor skills, the impulsivity, the getting so ramped up he can?t calm himself down, the tactile defensiveness with water on clothing or on the outside of a drink etc., playing too rough, sometimes struggling to understand social clues and make sense of others' intentions, lack of eye contact, clothing issues, hugging animals to hard, wanting so hard to please his parents, yet not able to control and self regulate for appropriate end results, all of it?

You're not alone and I love that this website provides a way for others to connect with common ground and share information for the sake of helping those we love. These kids are so bright, so loving, so gifted and they are ours because we know how to help them best, and if we don?t, we search answers and advocate for them so that they can enjoy life and be successful. :)

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