Life With A Sensory Seeking Body (19 year old)

by Maria
(Illinois)

I am 19 years old and I have SPD. I am hypo sensitive and I like to chew on things a lot. That is how I regulate myself. I just wanted to let you know that you are not alone! Also, that sensory seeking behaviors do improve with therapy.


Days can be so unpredictable. Sometimes you can sit back and relax, other days you need to move all day. Sometimes I don't feel things I should... one day I even sat on a plate and I didn't even know it until my mom told me. You have to remember, we have a great life even though sometimes we have fun and other time it can be so hard to function. I was probably a very strange child, but now I'm an adult with SPD.

Sensory Integration therapy works, you just have to be patient in seeing the changes because it takes a while. I remember that from a few years ago when I was in therapy, and I learned a lot. You have to remember your children need your help and guidance, believe me, I know. When they get stuck, they get stuck and need your help!

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Jan 05, 2013
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One of those "high engine" days.
by: Anonymous

Today I feel like I have failed my son. My son is 4. He's a sensory seeker. We have good days and then we have bad ones. When we have good days I feel happy and in control of my parenting skills - things like discipline, routine, consistency, warnings, all seem to work and I pat myself in the back for being such a "good mom" and my son a "good boy".

And then, there are days like this, where I dread being at the particular event because I can already tell from the moment we arrive that he's not going to make it through the night or perhaps it will turn into one of those nights where we have to leave the premises rushing out like crazy people because he's acting out or whether we will stay and I will try all kinds of warnings, coping strategies, reminders, consequences and none of them will work and I will then feel embarrassed and angry. Embarrassed because everyone is watching and I know what they are thinking: "spoiled brat" "lack of discipline" "poor parenting", etc, and then angry at them for having those thoughts, angry at my son for having to act that way, angry at myself for even thinking that he should somehow be able to magically regulate himself, mad because I expect him to act a certain way but he was this hidden condition that I don't want anyone to know about, angry that I can't tell people about it because I don't want them to treat him differently or look at him in a different way or even think about him in a different way, angry because I love him to death and I, at that particular moment, feel like I cannot help him, like I have failed him, I feel as though i am constantly trying to correct, discipline, change something that makes him who he is, something he can't seem to control. I am mad at myself when I think of his little eyes looking at me and wishing he could change, wishing his engine could be "just right", to make me proud and happy and relaxed as I am on those days when we are having a "good day".

I know he is strong and resilient and knows I love him... And we will make it through this journey and come out stronger and better people... But some days are just so hard!


Dec 07, 2011
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General SI Dysfunction
by: Anonymous

Hi, my son is 8.5 and just diagnosed with General SI Dysfunction. he's a great tennis and baseball player and very intelligent, you would never know there is anything going on with him. He is a seeker, and needs alot of it. When he needs input, all his behaviors come off as being a "spoiled brat" or a child who is misbehaving. I always knew something was going on with this body, I just hoped it would go away with age. I have heard people put him down and put me down as a parent. There is nothing more degrading for parent to hear, then you are not a good parent. My skin is getting thicker.

He started therapy 2 wks ago. I am hoping to see the light soon...

For anyone who is not sure, do not wait, get dx and therapy..

SDS

Jul 18, 2011
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Sensory Seeking 4 yr old boy
by: Anonymous

I have a 4 yr old sensory seeking boy. I have been told that he is not on the spectrum but that alot of doctors will put any child with sensory problems on the spectrum just for that reason. I'd like to hear others thoughts regarding the differences between the two diagnosis. Also Id like to know the unpredictable- what his future and our future might be like. Ive been told that he has normal intelligence but he has trouble integrating with peers because he can be so rough and as soon as he's overstimulated he becomes a total handful and behaviors become inappropriate. I am lucky that he is a good communicator and is able to express himself although I know that learning disabilities are most likely probable.

I have always seen some auditory processing difficulties with him that I'm sure we'll have to get tested for. He has two years left in preschool before he starts kindergarten because he luckily has a late birthday. He does seem to be learning fine so far and almost has all his letters down. His teachers tell me that he can get lost in a group but learns well one on one. I would love to hear from anyone who is older now and has lived with this disorder or any parents who have a similar child and are ahead of me in this game. He can be very emotional and stubborn and taking him places can be exhausting and difficult. This is a hidden handicap so I feel judged by other parents on a regular basis. I used to have thin skin but it is becoming very thick! Please share any useful information that you may have!

Jan 24, 2011
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mom of 15 year old
by: Anonymous

thank you

Jan 01, 2011
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sensory seeking 9
by: Anonymous

very physical 9 yr old boy who runs! any ideas for rainy days? we swing in the basement. where to get supplies

Dec 07, 2010
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Parent who Needs Help
by: Anonymous

My almost 3 year old son was just diagnosed with SPD. My husband and I realized that there has been something going on with him since he was about 4 months old. We did not realize how difficult it was going to be to deal with until today. Our daughter also has some sensory issues, but she is not a sensory seeking body. She's would rather hide from noises and be by herself. Now that we are realizing what is actually going on with our children does anyone have any websites or any suggestions about how we should deal with opposites in the same family. Thank you.

Oct 25, 2009
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andi this should help
by: maria

It will get better i have to admire your daughter sound just like when i was younger i hear story all the time from my mom ! but all you have remember stay clam because your child will pick up on it i get very upset and start to chew if im in crowds i now even shack but it do to sensory overload but to me it not how hard they fight it what there body seeking sorry it took me soooooooooo long to respond i had a great mom how never lost it on me i can chew a ton of stuff i even get through stuff that shouldn't get through but i leadred that if i chew on a wash cloth it gives me the same feedback talk to her about it i know i can tell it help to know what she thinking maria

Oct 25, 2009
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sorry it took soo long
by: maria

I actually wrote this to explain to many how my body reacts. Thanks for the reply. We need a ton of research badly. I hate seeing all these children suffer. I have it to a pretty big degree. It is hard now im 21. I still deal with it. I wrote this at 19 years old and well life gets better. Follow the ot directions. You as parents need to help them realize how awesome they are because they need to be told.

May 18, 2009
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had to research and learn
by: Anonymous

I've raised my grandson since he was 3 months old, and he is now 6 and in kindergarten. He's always been 'more' in so many ways. He needs lots of supervision, and now that he's in kindergarten I've really had to take action to find out what he's dealing with. He needed a correct diagnosis in order to be responded to correctly...otherwise the molding of his ego and development would not happen in a healthy way.

I did the research myself, and he is now diagnosed, with Sensory Processing Disorder. He deals with the tactile issues of being too sensitive to certain clothing items, and he is also a sensory seeker. His intelligence and academic abilities are superior, but I've done the steps to get him eligible for special education so that he can be more successful at school, working on behavior and social skills.

I always try to work on the understanding that what is typically 'bad' behavior and choices by another child may not be with my grandson. I look at intention, but also understand and teach him what is acceptable and unacceptable. He must learn to cope with his disability.

It's all a process, and working with a sensory seeking child takes lots of time, effort, work, and a huge commitment. This child also needs lots of supervision in order to help him/her stay safe. They can be big risk takers.

My advise is to research and learn as much as you can about this disorder, when you have a child who deals with it. Also, really WORK to keep your voice calm at all times, as your stress hormones increase when your voice starts rising due to circumstances, and once that happens it's really hard to get the situation under control again. You lose control quickly when your voice level goes up. Always, keep your voice calm.

Nov 02, 2008
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Andie
by: Anonymous

Hi Andie,
I have a daughter that has SPD also, yet I have some suggestion if this will help.

Your child for school, you might want to look up Therapro.com or just look up sensory crayons / pencils. On this site, you will find air cushion or pshysio balls your child could use in her classroom to help her concentrate. Writing materials: a triangular pencil, crayons, chalk, to help her hold the pencil and push as hard or firm and not break the pencil. Made specially for that. Fidgets to be put on pencil tops or some she can chew for that purpose to help her organize herself and thinking.

Use a weighted lap pad or weighted blanket : dreamcatcher.com will let you know what put inside the blankets for sleeping or playing and calming herself down.

Playdough is excellent for fidget or use to work her muscles in her hands anything arts / crafts , but watch out for sensitive to tactile.
Brain Gym excellent, some schools are doing some in classroom. Anything that crosses her body will help her organize and put in order. Check out the heavy work activities on sensory processing disorder. Night time our, we have a low 15 watt or 20 watt light bulb on her lamp and keep that on all night. Sometimes wakes us up for reassurance that we are around.

Keep up the good work but get a hold of an OT in your school distract and stay on them. Maybe she
might need to be brushed (look up brushing). 12 wks. every 2 hours of her waking hours except 2 hours before bed. Usually deep pressure or spins or crosses her legs and squeezes until she stops (deep pressure for herself) before bed if she seeks or does it herself. Or use scented calm or stimulate check out if she is allergic first.
Helpful parent

Oct 26, 2008
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Would love to hear more..
by: Imogen

My son is 11, and he hasn't had any treatment, can you tell me the best treatment for him to get? I had heard that Kinesiology can be helpful.

Sep 12, 2008
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No dx yet, but I believe my child is hyposensitive
by: Andie

I would love to hear more from you! My daughter is 5 and just started kindergarten. Her quirks have been obvious since the age of about 2 1/2. Probably sooner, actually, but until then, I could focus on only her and 'pad' her world.

We have not gotten a diagnosis yet, but I'm convinced this child is afflicted with SPD. I wanted to see if these types of things sound familiar to you... and perhaps you can give me some insight on how to help my baby girl.

One BIG issue is that she is constantly talking or making noises. She talks to herself or inanimate objects if there is no one else for her to talk to. I get the feeling that she may be hypersensitive to sounds and makes the noises in an attempt to block out all the other sounds around her. She has fits when anyone cries (because the noise scares her to death; not because she's concerned about the person crying... I've asked her!) and either cringes and tries to hide or starts making very loud noises herself, when there seems to be too much going on for her to process.

As for the hyposensitivity: When she was a tiny baby, we had to put the swing setting on high to get her to relax. When she could crawl, she started crawling in circles. When she started walking, she would spin endlessly-it was nauseating to watch-and be able to walk away in a straight line. At the age of 5, she still spins whenever she can. If we are doing something that she is supposed to focus on, she seeks something to fiddle with. If we're on the floor, she will jump up and fall down onto her knees; not like having a fit, but like it's fun for her, and she'll do it over and over. Sometimes adding 'knee spins' or other ways of banging herself onto the floor.

She has had pet snails and although she doesn't seem to want to hurt them intentionally, she almost always breaks their shells if she is left unattended (Daddy does that!). If I'm there, I will constantly remind her to be gentle and if she gets fidgety, I'll take them away and put them up so she doesn't end up smashing them.
She has a horrible time settling down at night. She seems to be deathly afraid of the dark. Many nights she will wake up numerous times and need our reassurance. She seems to NEED to hit or pinch or squeeze things (the cats, her sister) and if we give her a pencil, she immediately MUST chew off the eraser. She presses crayons and markers so hard that she ruins them. School work is a mess. She has an impossible time completing work unless someone is there keeping her on track every step of the way.

There is much, much more, but does any of this sound familiar to you? I'd love to hear what your life has been like. Any insight on what I might be able to do to help my daughter would be treasured!

Aug 25, 2008
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Thank you from a Mom of a daughter with SPD
by: Lauri

It is always good to hear about success stories. Mom's and children need encouragement. It gets discouraging sometimes.

Aug 23, 2008
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A mom who needed to hear this
by: Anonymous

Thank you for sharing. My daughter has SID and I need hope that things will improve. We are still trying to find out how to regulate her days, what causes her tantrums and how to help. She too needs to chew on everything.

Jan 13, 2008
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Reaction to adult SPD story
by: ERIN

You are brave for sharing and enlightened for realizing your uniqueness! Best of Luck to you in all your endeavors!!!

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