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Finally some answers!


Forum: 2008 Playroom

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  #1  
October 19th, 2010, 07:53 AM
Hazelnut Latte's Avatar Mega Super Mommy
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During our normal EI session, an occupational therapist visited the house and gave me so many answers and tips. I need to fill out a survey and they need to enter it in, but she seems pretty sure he's somewhere on the spectrum of Sensory Processing Disorder. From what she saw and the questions she asked, it seemed to her that he MAY have a mild form of it and he is definitely more sensitive of a child than most judging from his aversion to certain textures/foods, crowds of people, overly dramatic teething pain, the many tantrums throughout the day, and other strange behaviors he sometimes has. She also says he has very strong preferences which fuel the tantrums and aversions. A lot of things make so much sense to me now. She also said lagging in speech is part of it. Autism was always in the back of my mind, but it never seemed to really fit.

Right now I just feel relieved to finally have some answers to his dramatic behavior. At least now I can take steps to learn to help him and if he doesn't outgrow it, I can at least be aware and help him live with it if it interferes with school since SPD kids sometimes have a harder time in school than others. I just needed to get his out!
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  #2  
October 19th, 2010, 08:16 AM
doremi's Avatar Team Blue Mama of Two
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I'm glad you're getting some answers! Good luck as you work to figure out how best to help Charlie through this!
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  #3  
October 19th, 2010, 08:24 AM
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I'm glad you feel better with some answers. Good luck!
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  #4  
October 19th, 2010, 11:18 AM
mommyof3now's Avatar Platinum Supermommy
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((hugs))) I'm so glad you got answers now you can find ways to work around it. Brushing relay helped Ethan.
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  #5  
October 19th, 2010, 12:30 PM
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I'm glad you were able to finally get some answers about Charlie's behavior. I hope you can get some good strageties to use with him.
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  #6  
October 19th, 2010, 12:30 PM
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I'm glad you're getting some answers!
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  #7  
October 19th, 2010, 12:43 PM
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Jonah has sensory processing disorder. It is really easy to work with once you figure out what situations he seeks and what he avoids. It has also made family members a little more tolerant of certain behaviors he has. I HIGHLY recommend the two books called "The Out of Sync Child" and "The Out of Sync Child Has Fun." The first gives some insight into what sensory processing disorder is and how to handle it. The second has AWESOME activities for helping children cope. Jonah loves the "hot dog" activity. I got both from my local library and I'll be buying copies for my own reference because there is a very long waiting list for them at the library, so if I need to look something up real quick, I want my own copy. They are such good books
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  #8  
October 19th, 2010, 01:56 PM
Hazelnut Latte's Avatar Mega Super Mommy
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I'll be getting that book (The Out of Sync) soon! DH is doubtful about everything and saying 'he's a perfectly normal little boy' and I feel like screaming. He's not with him everyday having to deal with this behavior every.single.day. It's tiring. He says it's all to do with his little sister. I agree she triggers things easier, but he's always been like this since day 1.
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  #9  
October 19th, 2010, 02:11 PM
Effervescence's Avatar Platinum Supermommy
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Everyone doubted what I was saying about Jonah too. They told me I was just paranoid, and because I had learned about these things in school I was suddenly coming up with a diagnosis for every little thing. MIL accused me of "excessively labeling" him. But you know what, Mommy knows her baby. From what other moms have said, it seems that Mommy knows way before anyone accepts what is going on. And you know what? I was right. There *is* something wrong with my boy. He has a genetic disorder that is causing him to have SPD. And you know what else? It is because of the testing and assessments that *I* pushed for, because *I* knew something was wrong, that led to us finding that he has these missing genes. I'm not saying that Charlie has any of that, just that if you think something is up then Mommy is probably right about it. If I had listened to my mommy instinct and not listened to everyone else tell me that I'm just a worrisome first time mom, then Jonah could have gotten help so so so much sooner
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  #10  
October 19th, 2010, 02:23 PM
Hazelnut Latte's Avatar Mega Super Mommy
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Yeah, I've held back a lot and keep letting go because people all around me tell me 'he's fine. He's acts normally.' No, he really doesn't. Yeah, sometimes he's pretty good, but he over reacts waay more than any child I've ever encountered. We get stared at in public and we sometimes get criticized by strangers. I think you've posted before about his behavior, but do you mind saying again how Jonah acted as far as sensitivity goes? Do they necessarily have to have a genetic disorder to have SPD?

ETA: Btw Jess, all those activities you suggested in my last thread were all mentioned by the OT! I'm excited to try them!
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Last edited by Hazelnut Latte; October 19th, 2010 at 02:31 PM.
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  #11  
October 19th, 2010, 04:04 PM
kallie74's Avatar Platinum Supermommy
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Good to hear that it was a good visit and you feel you got some good info
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  #12  
October 20th, 2010, 09:46 PM
Effervescence's Avatar Platinum Supermommy
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Yeah, I'll admit that I got the car wash idea from our OT, but the rest are just tried and true activities that my preschoolers had a blast with, so I use them with Jonah as well.

How sensitive Jonah is depends on the situation. Typically, he is sensory seeking. If he is bored (ie, in the grocery cart at the store) he will start making this god-awful screaming noise. I call it his wookie noise, because imagine having Chewbacca in your cart, and that is what it is like. The whole time he is either hitting his head or biting himself. I can't take him shopping with me anymore, I started to go when he was at his EI class, but I don't think that's a possibility where we're at now. I went two weeks ago, and a worker came over to me and said "I bet you'll be glad when the eagle's nest is up and running!" I didn't know what to say- I was THAT mom with THAT kid, and I was being told he should be put in the "daycare" while I shopped. I was so embarrassed that I haven't been shopping since... we're literally down to our last meal possibilities. He also has no reaction when he gets hurt or when something should have been very scary for him. He throws himself down stairs and gets up and laughs about it. If he falls, he suddenly wants to do it over again. He purposefully tips his chair over. I'm really afraid he is going to hurt himself seriously. It isn't like he is doing these things 24/7, and a lot of people who spend substantial time with him have never seen him do something like that, but he does it frequently enough to keep us on our toes.

Then he is also is sensory avoiding. He doesn't like to wear long sleeves, he rolls them up, and now that it's getting cold, it is a real problem to keep a jacket on him. It takes a lot of coaxing to get him to touch things and sometimes if we make him touch it before he is ready, he has a melt down. He won't eat certain textured foods, and complains about things that most people don't even notice (tags on clothing, harnesses/seat belt type things) It is much less dramatic then his sensory seeking situations, but I think it occurs just as much.

Then other times he is just sensory confused. He has a hard time with his balance. He has no sense of space relative to himself so he runs right into things (sometimes it's comical, other times a safety concern) He has a hard time navigating obstacles like stairs and things in his path and sitting in a chair.

And no, someone certainly does not need to have a genetic syndrome to have SPD. In fact, he was diagnosed with autism and apraxia at the same time as SPD and it was those two diagnoses, not the SPD that prompted the genetic testing (not everyone with those have genetics causing it either, just some individuals do)

hope that helps! Sorry if the post seems to be out of whack, I was dealing with some non-sleeping children while I was trying to write this, so I went back and forth from it
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  #13  
October 21st, 2010, 04:01 AM
Hazelnut Latte's Avatar Mega Super Mommy
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Thank you so much for your response. It sounds like SPD can have a lot of different symptoms! Like how Jonah doesnt seem to feel pain quite as well, the OT was telling me how they can also feel pain to a more heightened degree like Charlie. Like teething pain was agony for him and he seems super sensitive to pain.

I also have THAT kid at the grocery store. We don't go places like that anymore. I luckily have DH who has a flexible schedule for the time being where I can leave him. The times we have taken him, he lets this ear piercing shriek that doesn't stop until we leave. He's not being a brat like a lot of people who stare at us think. He's overwhelmed and doesn't quite know what to do. He also has normal tantrums like any other 2 year old in public if something doesn't go his way, but there's no stopping it once he starts and I've gotten criticized before for my parenting by an old couple.

We also have some sensory avoidance issues with water, sand, grass, food, long sleeves. Some days he'll tolerate baths though and some days he'll tolerate grass. It's weird. Not sure if this normal, but he shrieks and kicks at every.single.diaper.change for his whole life.

I've been doing some reading and read something that explained a lot to me. He has some overload days where he screams and shrieks for no reason and constantly goes through a cycle of picking up, spinning, hugging, twirling over and over and over again all day long. And when you put him down, he's attached to the back of you like glue. I never would've suspected it had to do with anything, but I've read of people's experiences with SPD that it's common because they're looking for that rush.

He's not diagnosed yet. This is just what the OT suspects. If they do find he has SPD, is this something that's going to follow him the rest of his life? Maybe you can tell from my typing or something, but I feel a little reluctant to do it. I don't want there to be something wrong with him, but at the same time I want to help him. I want to tell myself that maybe he's just slightly more sensitive than the normal kid and that's normal? Sometimes he goes through weeks at a time where I think he's mellowing out, but it starts all over again. I'm not sure what I want to happen.
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  #14  
October 21st, 2010, 12:43 PM
LisaB's Avatar Mom to twins + 1
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I'm so glad you were a strong mommy & didn't listen to all those naysayers! Hooray for answers!
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  #15  
October 21st, 2010, 01:17 PM
RainyDay's Avatar Platinum Supermommy
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I'm glad that you got finally got some answers. I know what it's like to have other family members and friends tell you that you're worrying about nothing/he's normal/he's fine, when you know something isn't right. We went through the same thing with our older son. I've even seen it here on JM--most mom's are quick to tell you that you are reading into a behavior too much, and there's nothing to worry about. How many times have you read this response to a concern: "I'm sure he/she is fine. If you're really concerned about it talk to the doctor."

My son, Sean, has a diagnosis of PDD-NOS, which is on the autism spectrum, and along with that comes a lot of sensory issues. SPD was thrown around by one of the therapists he saw, but I know his aren't severe enough to fit the SPD diagnosis. But he definitely has his issues with clothing and food, and a lot of his sensory seeking is visual--examining vertical lines or structures--from a straw in a drink to a pole outside to the wall that divides the dining room from the TV room. He will move his head from side to side looking at the object and he'll keep it up for 10+ minutes if you let him.

So are you not sure about getting a diagnosis? It can be overwhelming, but for us we just wanted to know for sure so we could move forward and get him the help he needed. Good luck in whatever you decide to do!
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