How do I explain to outsiders?

by Kimberly Wise
(Burnsville, NC)

I am hoping someone can help me regarding my 6 year old son. My son was recently diagnosed with SPD.


My question is since this is not a condition that most people have heard of how do I help others to understand what it is? My son is starting to play youth league sports and getting involved with other children he does not normally interact with. While I try to explain the condition to others they do not understand the issues he has are extremely difficult to deal with for not only my son but the adults he deals with. Should I carry around a flier with the issues he has? Should I try to explain it is "Like ADHD/ADD" which may give him the label of "ADHD/ADD" even though he is not? How do I help these outsiders (especially coaches who do not understand why he twirls in the outfield or misses the ball because he is looking at the sky)? What can I say to try to explain to his peers and their parents as to why he acts the way he does when they do not understand that SPD is even a condition, neither less what it is?

My son is very loving and friendly. And looking at him he does not look like anything but a healthy, normal 6 year old. He loves playing sports, etc so I can't imagine my son not being a part of the games/outings he wants to attend but he is getting the reputation of a problem child (yet they understand the kids who have ADD, ADHD, etc can not perform to the ability of other children). I have talked to his doctors and therapist but no one seems to have the answer to help me.

Can you please help!!!

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Jan 26, 2012
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I know how you feel
by: Anonymous

My son is now 11 and it has been a difficult r oad for us. Children with SPD get a bad rap.Our children have a hidden disability, and therefore people who do not understand SPD think and see our children as behavior problems rather than a child with a disability. I went back to school and received my masters in special education just so I could help my child. I am still trying to educate teachers about spd. I have stopped trying to explain to other people about my son. From the time he was a pre-schooler I stopped going to the grocery store, the church etc. because it was just too difficult and I would worry that he would have a temper tantrum, or start running around wild. I even had someone at school tell me that I should spank him. I am tired of dealing with narrow minded people. But, I will continue to be an advocate for him because if we are not advocates for our child who will be?

Sep 08, 2011
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thanx
by: Anonymous

Thank you. My son has also been diagnosed with ADHD and is on meds since I wrote the original request for help. The nice thing is the meds calm him so much (yet not a zombie) that I do not get asked as often as I used to.

Thank you to everyone who helped me with this.

Sep 08, 2011
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Special Needs a good catch all
by: Anonymous

Thank you, that would undercut all the explanation! My daughter has since been diagnosed with ADHD and is now on medication, which does help. I still think some people don't believe in it, they just think the child is wild and you don't discipline them. So the special needs phrase may just come in handy! After all, she is special in many ways! :)

Sep 07, 2011
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Special Needs Child
by: Anonymous

I have a 4 1/2 boy with PDD and ASD, possibly ADHD, (in the process of getting him evaluated), and I can relate to what you are feeling. what has worked for me is this one term that everyone in the world knows. SPECIAL NEEDS CHILD. Meaning he is special in his own unique way, making him very different from other boys. To really understand him, you would have to go through an extensive research and training on those specific needs.

If they are interested in knowing more, than you can then try to explain, but I guarantee you, even like that, they will not understand, without first delving into this subject.

So SPECIAL NEEDS is the key term, word or expression to use for the general public.
Hope this helps. God Bless u Both.

Jun 13, 2011
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Thank you
by: Anonymous

Roberta
It was helpful in the fact that you described exactly what is going on with my son. Even his own grandfather does not want to believe in SPD. I just wish I knew how to get it across to people but everyone's comments have really helped. Thank you!

Jun 13, 2011
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people don't get it!
by: Roberta

I have a sensory seeker and her SPD behavior manifests primarily as similar to ADHD. She gets wound up if over stimulated (like when with friends), and wants to touch everything, is hard on things and herself, doesn't listen/hear properly when wound up, and is just generally very active. She is adopted and I happen to hang out with people of her nationality (Chinese) and they really seem to think it is nonsense! Being a culture that believes in a very different type of medicine for example, and not believing in (in my experience) therapies. I think they think I am just not strict enough with her; however, even my husband expects her to sit still and I can see that she CAN'T. So I just don't even bring it up any more with certain people. Even the professionals in her life forget - swim teacher, Kung Fu teacher, when I specifically ask for a teacher who has patience and can work with this. Oh well! Don't think this was helpful, but I do understand your pain!

Jun 11, 2011
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Keep your chin up
by: Denise

I completely understand what all of you are going through, because I have been going through it for the last three years as well. My oldest son is 5 years old and I have always known something was 'off' about him compared to other children since he was a baby. Luckily, I have a very supportive family and they were willing to read all the information I sent them regarding my son's sensory issues.

As for explaining SPD to other acquaintances in my son's life, I usually take it on a case by case basis. I let me son be who he is for the most part without stepping in with explanations unless they are needed. For example, my son hates to be hugged/kissed/touched so when our very large extended family visits, I remind them that one of my son's "issues" is just that - so please do not hug/kiss/touch him unless he initiates it. The easiest way I have found to explain SPD in a blanket way is to say he is high functioning Autistic - most people ignore his differences this way even though it is not exactly accurate.

I'm not sure if this helps at all or not, but I hope something might. I would sit down with the new coach and explain the "issues" with your son that most likely will come up for the coach while your son is playing ball. Then I would explain the best ways you have found to deal with each of those issues. If the coach is willing to work with your son, then that is wonderful! If he/she is not, then find another team for your son. Our SPD kids will have it hard enough in their lifetimes that they don't need to be criticized when they are so young.

Good luck to you!

Jun 10, 2011
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Baseball
by: Anonymous

My husband volunteered to be the assistant coach so he is with our son all the time. Request a non competitive coach and explain to the coach what he will expected from a child with SPD and how to handled the child. In our area we have few baseball league organizations and we did some research on them....we picked the one that are more laid back than other organizations and the whole idea of playing baseball is to have FUN!!! Good luck!!!

Jun 10, 2011
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Thank you
by: Anonymous

Yes it is so hard... His last coach did not believe and would physically grab his arms and yell at him to "look me in the eyes when I talk to you"... He can not do that... it is a physically impossible thing for him to look and listen at the same time. And even though I told the coach he actually told me that maybe some "woodshed teaching" would help the situation... So I should beat my kid because he won't look at you???? Would he have suggested that for a ADD/ADHD child? I doubt it. I am just at a loss because as was said I do not want him to have excuses but I need people to understand. It is so frustrating!!!!

Jun 10, 2011
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Understanding for SPD
by: Anonymous

If my experience can be worthwhile, it happened to me the same thing. I have searched the internet all the arguments that explain this disorder, and behavioral consequences linked to it, I printed them and brought vision to the people who disbelieve. Also, after much research I found a specialist who knew these disorders, which after what I have said, has requested a comment on the child is thus able to explain this to the school and wherever necessary. We sincerely hope to find understanding.

Jun 10, 2011
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agreed
by: Krista

I saw your post and totally understand your frustration! I too have struggled with this. My son is 4, almost 5 yr and though in some ways he appears 'healthy/normal' - in other ways his twitchy/awkward movements & inappropriate responses set him apart. I struggle with helping others understand (and hopefully becoming sympathetic) by explaining his almost unheard of diagnosis (which I feel people sometimes think is an excuse I've made up for him) or just letting my son be who he is without explaining. My fear is that if I am constantly going behind him saying 'oh he's doing this or that b/c he has sensory issues'... I may be teaching him to make excuses rather than work on coping to adjust. You know what I mean? I wish it were more well known and understood but hate having my child being the poster child..

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