If SPD is the real deal...then my child is textbook SPD-Extreme. I'm scared.

by Jessie
(San Leandro, CA USA)

Our son is almost four years old. He is bright, funny, charming... really a majestic burst of light, momentum, energy at every turn. It also means that I must be "on" for every waking moment in my son's life. He is mercurial. He goes from good natured to crazy tantrums within a minute, usually brought on by not getting his way or being misunderstood.

We have removed people from our lives because they or their kids do not like our son's behaviors: this usually involves our son being very physical (bear hugs, talking right in the kid's face, non-consensual rough-housing, pulling toys away from other kids' hands, hitting, pushing, body-slamming, etc). Then, our son can not understand why the kids do not want to play with him. He may ask them (incessently, sometimes), "Will you be my friend?", and then be completely crushed and left dejected because the kid/s will run away from him and often shout at him, "No, I don't wanna be your friend!" He wants play-dates with his preschool classmates, but is unwilling to share his toys, but expects his buddies toys to be fair game.

My husband and I knew there was something wrong for a while now, but we really didn't know what to do. Was this a problem with our parenting? Were the other parents just too uptight? Was he doing these things on purpose, willfully? Would our son grow out of this? We would look around and see that most other kids were "brats" some of the time, but our son was challenging ALL OF THE TIME. He has a little brother, and we can't leave them in the room alone because we worry that big bro might hit little bro.

Then about a half year ago, I noticed that our son couldn't identify a color that I had just pointed out. Strange, so I tried again. I named the color (yellow), and then asked him to name the color. He looked at me and asked, "Red?" After trying this a few more times with the three primary colors, he asked to stop. Inside, I was panicked and shocked. What was going on here? Same thing with shapes, numbers, letters. Some days he knew certain letters, shapes, then other days, he couldn't id it correctly at all.

He is constantly looking for stimulation. He likes to bang things, break things, throw, rip, chew apart everything. He runs everywhere, jumps, climbs, over everything he possibly can. He is curious to a fault. If we lived in the wilderness, or somewhere rural, he would probably thrive and feel at home. But where we live, in a tough urban city, we don't have that for him without having to get in a car. Conversely, if he's in front of the TV with his favorite show, he'll sit slack-jawed, or sucking his thumb with his ever-present blankie, zoned out. Really scary to see how powerfully sedating/numbing TV can be.

We filled out the SPD checklist. Results:

-Hyposens to touch - extreme (meaning checked off most)
-Poor tactile perception - extreme
-Hypersens movement - moderate (checked off half)
-Proprio Dysfunctions
Sensory seeking - Extreme
Grade movement - Extreme
-Auditory Dysfunction
Hypersens to sounds - moderate
Hyposens to sounds - moderate
-Oral Input Dysfunction
Hyposens to oral input - Extreme
-Visual Input Dys
Hyposens to visual input - Extreme
-Auditory-Language Processing Dys - Moderate
-Social/Emo/Play/Self Reg Dys
Social - Extreme
Emo - Extreme
Play - Extreme
Self-Reg: moderate at infant stage
-Internal Reg - moderate

So, even with these results, I'm still questioning whether SPD is a real disorder or condition? Does the therapy really work? Will it make our son "better"? I know that we can go through our unified school district to get him assessed and treated, but I fear that he will be labeled and that this label will follow him all through his school life. Will he be a special ed student, and not a part of the mainstream school? Also, how intrusive is the assessment team into our family life? Do they have a say in how we parent?

Comments for If SPD is the real deal...then my child is textbook SPD-Extreme. I'm scared.

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Aug 29, 2009
Getting Him Help will Help You
by: Angela

There is no questions in my mind that SPD is very real. We have only been doing therapy for about 5 months, and very sporadically during the past 10 weeks of summer. But there has been a huge difference in not only my 4 y.o. son, but in the general family dynamic. I have also been reading quite a few books - I am learning to watch for things that 'set him off' and to jump in sooner. It is exhausting, but I try to remember he feels the world differently and how hard must that be for him? It has been my experience that the earlier one gets intervention, the more your child will be able to cope with the world. Good Luck!

Aug 26, 2009
Dearest Alisa, Luna and Ericka
by: Jessie


Thank you from the bottom of my grateful and humbled heart for your advice. You don't know how much your thoughtful responses have encouraged me and motivated me and my husband to move forward to start the process of getting real help for our son. We've been through the ringer in questioning ourselves, others, our son for these four years, on top of fearing what it means to get help for him and our family.

Next step for us will be to request an assessment from our school district. Please keep us in your thoughts and prayers as we embark on this new chapter in our adventure! We are so blessed and thankful for all the mommies, daddies, caregivers and professionals who desire the best for our kids. It is because of our profound love for our children that a resource as rich as this one exists. You are all in my thoughts and prayers, as well!

Aug 25, 2009
Asperger's maybe
by: Alisa

From much of what you described he sounds at lot like my oldest son when he was younger. I would seriously look at getting a assessment done for him in regards to a PDD like Aspergers or PDD NOS.

My son's behaviour has cause lots of friction with family and so called friends that told me I was not raising him right. He also gets in to peoples personal space and talks really close to there face specially when he was little. He went threw a stage where he was tapping females on the chest to get there attention he was not trying to be rude.

He has hugged strangers and tried to eat there food or drink there drink ect...I had to be hyper alert to keep on top of his behaviours. He licked people or there food some times he had some strange social behaviour and when I came across Aspergers syndrome when he was 7 I realized he probably had it and when I had my thoughts confirmed I was both relieved to find a reason and sad to think that he had to fight harder to fit in to the world around him.

Over all Aspergers syndrome has made it hard to get my son to learn good/positive behaviours but ONCE he has learned correct behaviours hes far easier than a average child as he does not lie or deceive and I love that about him and more.

Aug 25, 2009
by: Luna

You really need to find out everything you can about your sweet little guy...he needs to be tested in any and all suspected learning disabilities. All you have to do is request it in writing to your school district. If you disagree with the school districts findings, you can request an IEE Independent Education Evaluation at the school's expense, that is your right.

I am not going to lie. My two special ed boys have been through a lot, but they are worth the effort. My 18 yo just finished high school and will be entering Air Force boot camp in December, still has sensory issues (forever turning off lights so we all trip through the house) but he will be okay. He will struggle. My 16 year old will always break pencil leads, but he can keyboard well. His proprioception problems are very tough but he never gives up. I wish I knew more when they were younger because getting treatment earlier is better because older children become quite resistant to treatment. Find an OT and get an assessment read all you can:) I wish you much luck and many prayers. I am in CA too.

Aug 25, 2009
your questions..
by: Luna

""So, even with these results, I'm still questioning whether SPD is a real disorder or condition?""

I believe it is real. I have two boys and a daughter and they all seem to have varying degrees of SPD. Thing is...both the boys have been diagnosed with an LD (learning disabilities)boys are 18 and 16 now so I have been at this for a long time.

""Does the therapy really work? Will it make our son "better"? I believe the sooner the better. Middle son received OT and PT due to an accident and it ended up helping him, especially with tactile defensiveness. I didn't learn of his issues until he was around 13 and what a relief to finally understand. I wish I could have been more proactive. Younger son had serious proprioception problems that I didn't realize until around 12 and he too received some OT and some vision therapy. It depends on the child. Some children need medication, but that is a personal decision.

""I know that we can go through our unified school district to get him assessed and treated, but I fear that he will be labeled and that this label will follow him all through his school life."" If he gets a diagnosis, he will need the supports that special education offers.. Yes, it isn't easy to be a special education student, however, if your child has some other issues at play here, they need to be addressed. You have a lot of control as a parent and you can see that your child is in mainstream classes. Half the time I am telling my kids mainstream teachers, "do you know my son has an IEP?" "did you know he has dyslexia?" That is a whole other story ...

"" Will he be a special ed student, and not a part of the mainstream school?"" He may be a special ed student but he will be mainstreamed because he is bright and probably really smart and engaging. He is going to need assistance though...

"" Also, how intrusive is the assessment team into our family life? Do they have a say in how we parent?"" Oh hell no...they have no right. You have all the rights... You will be asked questions about how your son behaves at home and that is it..it's all very easy."" They will have a questionnaire.

Aug 24, 2009
absolutely it is real
by: Ericka

Hi, No doubt, SPD is real. The good thing is that yes, therapy does help, and sensory strategies definitely work! I am a special ed student and my son is dx ADHD, SPD, and Aspergers. We have been doing OT for almost a year, with an absolutely fabulous OT. I will say it hasn't improved my son's school work.....but we suspect dyslexia so that isn't the therapist's fault. In fact, she found that he had fine motor delays I never even suspected!

The main difference for us is that my son is happier with who he is. He has learned to accept his sensory needs, and he can perfectly identify his needs! Also, the OT is another person my son can trust-and that is something he desperately needs!

In our school district, the assessment process was woefully lacking! But I don't know where you are, so I really can't say what the process will be like for you. hth, Ericka

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