You see after reading Jennifer's book, I got this life changing perceptive on what my son may feel everyday of his life. Its always been tough for me knowing that Dylan has all these special needs and I don't know what hes thinking because his autism doesn't allow him to speak. He cant tell me what it feels like to be in the body of someone with sensory processing disorder either. So all day I would just see him have melt downs or hes just bouncing off the walls with energy, Even with an OT coming in and trying to explain it to me I always had this thought of "How do you know what hes thinking or feeling? Your just guessing just like me."
You can read all the books you want about SPD, but until you hear it (or read it) from a person actually having it, its really hard to understand.
The first question I have for you is, what is sensory processing disorder to you? What does it mean to have this disorder?
"In a nutshell, my brain doesn't process incoming sensory data correctly. Normal every day things trigger fight-or-flight responses, that really don't make any sense. For me SOUNDS are my biggest problem area. For example, someone walking by wearing flip-flops or smacking gum, or even typing on a keyboard will create sudden panic attacks. I also get really overwhelmed and physically tense and anxious if there's a lot of people talking in a room at once. It's also impossible for me to sleep at night unless conditions are absolutely perfect. There are literally hundreds of sounds I must avoid at all costs because the discomfort and anxiety racing through my body is just as if my very life is being threatened. It doesn't matter how many times I tell myself these things won't really hurt me. I know how ridiculous it is, but it's just the way my brain is wired I guess.
I also don't like being touched unless I know it's coming, and it's a really deep pressure hug or something. Light touch creeps me out. I'm very picky about what kind of clothes I can wear. As a kid I had a lot of food texture aversions too.
I also tend to be a sensory seeker in other ways. For example, I'm always sucking on mints or candy, or chewing my fingers. As a kid and teenager I would jump out of trees, and climb giant metal fire towers just for the adrenalin rush. In fact, as a teen I also started stealing cars and other things, just to create that powerful adrenalin rush that I craved so much. I knew I was living more dangerously than my friends often wanted to, but I was so compelled by the RUSH. It felt so much BETTER than the way I normally felt. So I was always thinking of crazy things to do, usually illegal or life-threatening, since that created a better rush. Had I known I had SPD perhaps someone could have helped me find safer (and legal) ways to cope. ha!" - Jennifer
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"I had trouble at home, at school, and was bullied by other kids a lot too. I was undiagnosed until I was an adult, so everyone just assumed I was weird, or an ornery brat. So all their attempts at trying to discipline me, or isolate me from other kids during recess as punishment, actually made things worse because they shattered my self esteem. I noticed I was being treated differently but didn't know why. Therefore, I assumed nobody liked me or that everyone wanted to hurt me. I mean, my brother was NEVER wrestled into a dress while he kicked and screamed bloody murder. ha! From my perspective, I developed a very negative self-image and some strong false perceptions at a very early age that could have easily been corrected had I been diagnosed or had someone working with me who understood what was really going on." -Jennifer
Jennifer wrote an article called "One Reason Why I'm So Weird", In that article she says,
"I realized early in life that I was different from others. So I believed I was an unlovable, broken mistake. But God doesn’t make mistakes. He has brought me on an amazing journey to show me that my SPD is actually a gift. I experience colors, patterns, and music at a very detailed and emotional level that most people miss out on. So, for that I am VERY grateful. All I need now is a leather uniform and cape to go with my mutant super-human powers."
As a child with sensory processing disorder how did it affect you?
"I had trouble at home, at school, and was bullied by other kids a lot too. I was undiagnosed until I was an adult, so everyone just assumed I was weird, or an ornery brat. So all their attempts at trying to discipline me, or isolate me from other kids during recess as punishment, actually made things worse because they shattered my self esteem. I noticed I was being treated differently but didn't know why. Therefore, I assumed nobody liked me or that everyone wanted to hurt me. I mean, my brother was NEVER wrestled into a dress while he kicked and screamed bloody murder. ha! From my perspective, I developed a very negative self-image and some strong false perceptions at a very early age that could have easily been corrected had I been diagnosed or had someone working with me who understood what was really going on." -Jennifer
Jennifer wrote an article called "One Reason Why I'm So Weird", In that article she says,
"I realized early in life that I was different from others. So I believed I was an unlovable, broken mistake. But God doesn’t make mistakes. He has brought me on an amazing journey to show me that my SPD is actually a gift. I experience colors, patterns, and music at a very detailed and emotional level that most people miss out on. So, for that I am VERY grateful. All I need now is a leather uniform and cape to go with my mutant super-human powers."
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"If I had been diagnosed as a kid, I'm certain things would have been different. My biggest problem was that nobody knew something was actually wrong with me. They just thought I was a behavior problem... a strong-willed child. If my parents had know I'm sure they would have done anything they could to help. I NEEDED a sensory safe zone, a place I could retreat to. It seems as if I was ALWAYS battling something and never had anywhere I could go to feel comfortable.
I also could have used help learning to cope and calm myself down after triggering events or periods of meltdown. Unfortunately for me, because I misperceived the world around me and assumed everyone was out to get me, I started drinking and using drugs at age 14, which was the first time in my life I finally found "peace". However, even though those things alleviated the anxiety and tension in my body, it set me on a path of destruction that almost killed me. So, I do NOT recommend giving children illegal drugs or alcohol to cope. ha!
It's incredibly important to find places, or things, that help comfort a child with SPD. Now that I'm an adult, I have specific times of the day I spend totally alone, in an environment I can control, so that I can decompress and unwind. That way I'm able to face another day. I have a secluded room in my house that nobody bothers me in. I love super hot Epsom salt bathes with peppermint oil. And I MUST have a loud box fan running or I can forget about even trying to sleep.
I do think it's incredibly important to help our kids develop a place or techniques (like plenty of exercise) that helps to alleviate the symptoms from SPD.
Today I work in an open-office work environment which is extremely difficult for me. The only way I am able to make it through 8-9 hours a day is by wearing over-the-ear noise cancelling headphones, playing music I enjoy. However, I think my hearing is becoming even MORE sensitive now when I'm not wearing headphones so I don't think LIVING in headphones all day every day is the right answer. But, it's how I cope through my day job. I could really use some help in this area!!
We need to be careful not to make excuses to isolate kids from the world. It would be real easy for me to become a hermit, if I keep making excuses for why I can't do something, because of my SPD. The main way I stay plugged into the world and relationships and keep a job is because I have the TIME and a comforting PLACE I can go into each day to calm down. I KNOW I have to face the chaotic world again, but knowing I have a safe place to go to afterwards gives me more strength and courage to get through the hard times." -Jennifer
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"For me, I need to know what to expect BEFORE something happens. For example, if I'm going to the grocery store, or an event I know will be overwhelming, I have to have a lot of time to mentally prepare for it. A day or two heads up would be great for things like shopping. If I'm going to have company come for a visit, I need like two weeks to prepare myself emotionally and have a plan of escape in moments I need it. If I'm going for a dental visit, well... I'm just glad I set my appointments six months in advance. It takes me that long to mentally prepare for that drama. haha!
I also NEED to know I have a safe place to land right afterwards. Then I can grin and bear it better, knowing my uncomfortable experience will be temporary. If a kid isn't getting enough calm down time in between panic attacks it could create some serious health problems. I'm not an OT, and I never had any intervention growing up, but as an adult this is the strategy I have in place that helps me get from day to day now.
I wrote another article entitled, "5 Things You Should Never Say to a Kid". Most parents don't MEAN to say these things that will hurt their kids. But sometimes a poor choice of words can really make things worse.
The BIGGEST helpful factor would be to BELIEVE your child. They need to feel validated, not made to feel crazy or weird or like they're just being troublesome. Believe me, they're the ones who are really suffering. Have as much compassion towards them as you can. Try and understand their triggers and help them find things to comfort them (time, place or exercise that helps)."-Jennifer
*********************************************************************************
"As an adult I am at a point in my life now where I am not wishing my SPD would be healed, or go away. I realize that I'm wired differently for a purpose. There are some definite "perks" to SPD. My brain is incredibly good at problem-solving, and doing creative things like drawing, etc. I make a good living because of how my brain thinks.
Once parents learn what triggers their child, and they help create a sensory safe zone and implement methods and strategies to help them decompress, then I think they can identify and work on their strengths and interests. This world would be incredibly boring if we were all the same. So, be on the lookout for the things that your child enjoys then set up specific times in the day or week where they can focus on those things without interruptions. SPD isn't all bad if we can learn how to overcome and work through the sudden meltdowns. Be intentional about finding opportunities for the child to work, do chores, do homework and socialize with other kids. But in smaller increments with a safe place to decompress. The goal is not to isolate them, but to help them become productive citizens with healthy relationships. They can definitely do those things when they learn some coping strategies for their particular problems." -Jennifer
*********************************************************************************
Jennifer wrote an article entitled "5 things you should never say to a kid " she talked about just that and how you can make a kid feel by saying certain things to them. Words are hurtful and sometimes you don't even realize your doing it, but that doesn't mean it isn't hurting the person. I know, no mother wants to hurt their child's feelings please head on over and check this one out.
Do you think there is anything your parents could have done to help you with your sensory processing disorder as a child?
"If I had been diagnosed as a kid, I'm certain things would have been different. My biggest problem was that nobody knew something was actually wrong with me. They just thought I was a behavior problem... a strong-willed child. If my parents had know I'm sure they would have done anything they could to help. I NEEDED a sensory safe zone, a place I could retreat to. It seems as if I was ALWAYS battling something and never had anywhere I could go to feel comfortable.
I also could have used help learning to cope and calm myself down after triggering events or periods of meltdown. Unfortunately for me, because I misperceived the world around me and assumed everyone was out to get me, I started drinking and using drugs at age 14, which was the first time in my life I finally found "peace". However, even though those things alleviated the anxiety and tension in my body, it set me on a path of destruction that almost killed me. So, I do NOT recommend giving children illegal drugs or alcohol to cope. ha!
It's incredibly important to find places, or things, that help comfort a child with SPD. Now that I'm an adult, I have specific times of the day I spend totally alone, in an environment I can control, so that I can decompress and unwind. That way I'm able to face another day. I have a secluded room in my house that nobody bothers me in. I love super hot Epsom salt bathes with peppermint oil. And I MUST have a loud box fan running or I can forget about even trying to sleep.
I do think it's incredibly important to help our kids develop a place or techniques (like plenty of exercise) that helps to alleviate the symptoms from SPD.
Today I work in an open-office work environment which is extremely difficult for me. The only way I am able to make it through 8-9 hours a day is by wearing over-the-ear noise cancelling headphones, playing music I enjoy. However, I think my hearing is becoming even MORE sensitive now when I'm not wearing headphones so I don't think LIVING in headphones all day every day is the right answer. But, it's how I cope through my day job. I could really use some help in this area!!
We need to be careful not to make excuses to isolate kids from the world. It would be real easy for me to become a hermit, if I keep making excuses for why I can't do something, because of my SPD. The main way I stay plugged into the world and relationships and keep a job is because I have the TIME and a comforting PLACE I can go into each day to calm down. I KNOW I have to face the chaotic world again, but knowing I have a safe place to go to afterwards gives me more strength and courage to get through the hard times." -Jennifer
*********************************************************************************
" Wow. This is tricky. I'd definitely say you have to look for consistent patterns and triggers. For me, the same things bother me now that bothered me as a kid. SPD is a strange disorder because it can affect people differently. But for me, many of my daily battles with parents and teachers were over the same things over and over and over again. For example.... forks clanking at dinner, or the rumble of the TV through the wall, or the fabric of certain clothes. I fought with my parents about these same things every single day, relentlessly.
I also think parents should try and help their child have a voice as to what's bothering them. If they refuse to eat something... it could be the taste... or it could be the texture... or it could be the fact other people around them are making so much noise they're in panic mode. In a meltdown they may not be able to explain because they're in a panic, frenzy. Identifying these triggers is going to be a BIG step in the right direction.
The biggest problem neurotypicals make is saying things like, "That doesn't make any sense. That shouldn't bother you. It's just milk. It's just polyester." Just because something doesn't make sense, or doesn't hurt them (or most people) doesn't mean the we are faking or just pitching a tantrum. Who WANTS to feel that miserable? Nobody! For those of us with SPD, our triggers are EXTREMELY uncomfortable. We'd do ANYTHING to make the feelings stop. If our experience is never validated and understood it will only make things worse. If people don't believe us, or advocate for us, it can really damage our self-image. It was by far the biggest problem I had growing up. It's what led to me trying so many dysfunctional ways to deal with what I was going through." -Jennifer
Every day parents of children with sensory processing disorder are asking themselves whether or not their child's tantrum is due to sensory processing disorder or normal adolescence. What advice could you give us on how to distinguish the difference?
" Wow. This is tricky. I'd definitely say you have to look for consistent patterns and triggers. For me, the same things bother me now that bothered me as a kid. SPD is a strange disorder because it can affect people differently. But for me, many of my daily battles with parents and teachers were over the same things over and over and over again. For example.... forks clanking at dinner, or the rumble of the TV through the wall, or the fabric of certain clothes. I fought with my parents about these same things every single day, relentlessly.
I also think parents should try and help their child have a voice as to what's bothering them. If they refuse to eat something... it could be the taste... or it could be the texture... or it could be the fact other people around them are making so much noise they're in panic mode. In a meltdown they may not be able to explain because they're in a panic, frenzy. Identifying these triggers is going to be a BIG step in the right direction.
The biggest problem neurotypicals make is saying things like, "That doesn't make any sense. That shouldn't bother you. It's just milk. It's just polyester." Just because something doesn't make sense, or doesn't hurt them (or most people) doesn't mean the we are faking or just pitching a tantrum. Who WANTS to feel that miserable? Nobody! For those of us with SPD, our triggers are EXTREMELY uncomfortable. We'd do ANYTHING to make the feelings stop. If our experience is never validated and understood it will only make things worse. If people don't believe us, or advocate for us, it can really damage our self-image. It was by far the biggest problem I had growing up. It's what led to me trying so many dysfunctional ways to deal with what I was going through." -Jennifer
*********************************************************************************
At times children with SPD can be difficult to control, what advice can you give on how a parent should approach their child having a sensory meltdown?
I also NEED to know I have a safe place to land right afterwards. Then I can grin and bear it better, knowing my uncomfortable experience will be temporary. If a kid isn't getting enough calm down time in between panic attacks it could create some serious health problems. I'm not an OT, and I never had any intervention growing up, but as an adult this is the strategy I have in place that helps me get from day to day now.
I wrote another article entitled, "5 Things You Should Never Say to a Kid". Most parents don't MEAN to say these things that will hurt their kids. But sometimes a poor choice of words can really make things worse.
The BIGGEST helpful factor would be to BELIEVE your child. They need to feel validated, not made to feel crazy or weird or like they're just being troublesome. Believe me, they're the ones who are really suffering. Have as much compassion towards them as you can. Try and understand their triggers and help them find things to comfort them (time, place or exercise that helps)."-Jennifer
*********************************************************************************
Is there anything else you would like to add, that you think is crucial to a parent's understanding of their child with SPD?
"As an adult I am at a point in my life now where I am not wishing my SPD would be healed, or go away. I realize that I'm wired differently for a purpose. There are some definite "perks" to SPD. My brain is incredibly good at problem-solving, and doing creative things like drawing, etc. I make a good living because of how my brain thinks.
Once parents learn what triggers their child, and they help create a sensory safe zone and implement methods and strategies to help them decompress, then I think they can identify and work on their strengths and interests. This world would be incredibly boring if we were all the same. So, be on the lookout for the things that your child enjoys then set up specific times in the day or week where they can focus on those things without interruptions. SPD isn't all bad if we can learn how to overcome and work through the sudden meltdowns. Be intentional about finding opportunities for the child to work, do chores, do homework and socialize with other kids. But in smaller increments with a safe place to decompress. The goal is not to isolate them, but to help them become productive citizens with healthy relationships. They can definitely do those things when they learn some coping strategies for their particular problems." -Jennifer
*********************************************************************************
Jennifer wrote an article entitled "5 things you should never say to a kid " she talked about just that and how you can make a kid feel by saying certain things to them. Words are hurtful and sometimes you don't even realize your doing it, but that doesn't mean it isn't hurting the person. I know, no mother wants to hurt their child's feelings please head on over and check this one out.
If you liked what Jennifer had to say here your just going to love her book.
Confessions of a Rambunctious Kid: A Quest for Self-Discovery and the Meaning of Life
Is available on paper back
Also available On these E-Readers
Stop by and check out her website http://jenniferleighallison.com/ she has tons of really useful information on there! Thanks again Jennifer for doing this, it means a lot to me that you are so eager to help raise awareness about SPD and helping me to see what my son may go through, along with any of my readers children. God Bless you.
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Jessie
Disclaimer: All words and thoughts written in this post are my own, I wasn't paid to do this post in any form. I purchased the kindle E-Book version of "Confessions of a Rambunctious Kid" And wanted to share my love for this Author and her book with you all :)
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