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Mom to 2yo w/sensory seeking, aversion
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Maggie in VA Offline
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Posts: 16
Joined: Jan 2013
#1
Mom to 2yo w/sensory seeking, aversion

Hi, I'm mother of 2yo twin boys, one of whom has behaviors that seem to suggest SPD, at least his occupational therapist asked me to read "The Out of Sync Child." He does not have a formal SPD diagnosis, and as I mentioned in another post, I'm unsure whether it's productive to seek one given that schools don't seem very open to granting IEPs for them.

But Bobby's behaviors can be quite disruptive in our home. As I posted in my first thread, I'm having problems with him wanting to fondle my hair constantly, pulling it and hurting me. He also slams into me and his father, goes on almost manic jags, and screams a lot. He is having sleep issues, too.

I was skeptical when the OT asked me to read "The Out of Sync Child," and I admit, I still am. SPD sure has a diagnosis du jour feel to it, but I'm even more scared by learning that some child development experts think it's not a separate disorder, just behaviors that accompany other disorders. If Bobby doesn't have SPD, is he on the autism spectrum?

So, I'm feeling somewhat confused and worried right now. Bobby is a sweet, clever little boy who helps me when he can and is kind to others. But he can also be a completely different child, one who hits his brother and me, tries to scale every barrier we erect to areas that aren't child safe, and has trouble self-comforting.

Bobby is intrigued by mechanical things, and he loves helping my husband when he's working in the yard or making repairs. He is funny, with a precocious sense of humor.

Since the twins' birth, I haven't been able to do much of anything but take care of them, but I used to dance on a Northwest clog morris team, and I like reading, recumbent cycling, vegetable gardening, and cooking. All those things feel like fond memories now, but I'm hoping that as the kids are able to participate more with us, I can get back to them.

Maggie
(This post was last modified: 02-06-2013, 05:02 PM by Maggie in VA.)
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heather40 Offline
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Posts: 210
Joined: Sep 2012
#2
RE: Mom to 2yo w/sensory seeking, aversion

You will, I was limited to doing things for a long time because I could not leave him with anyone, my x husband could not handle him very well, but once I was able to know he would not clock somebody and could at least behave for anywhere to 30 min to 1 hour I went back to the gym. I did have to bring a bag of items with me. Still I have to bring things with him if he goes the to daycare in the gym. I takes time but you will get there. I still scarf down a meal when we go out to eat because you had to hurry up and eat because he was ready to leave and that was that, we had to go !!!! He is good about that now. So in time things will be different.
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Tuttleturtle Offline
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Posts: 223
Joined: Jan 2012
#3
RE: Mom to 2yo w/sensory seeking, aversion

Another book you might want to read is Sensational Kids. It goes into SPD as well, but there is also things about how our nervous systems have been shown in small tests to react different than other people's. We need more evidence, but its not unstudied at all.

When it comes to "if he doesn't have SPD, is he on the autism spectrum?" There are actually multiple adult members here who are on the autistic spectrum with an SPD comorbid. I'm one of them. There are also parents here with autistic children. Especially those of us adults can reassure you that if its not just SPD, if it is more than that, people can live their lives despite it. Our lives might never be normal. We might never do what a random person off the street would expect. But we can be happy and successful in our own ways.

And really, the same thing is true for a child with SPD, they'll grow up in their own way. They won't grow up in the way that a random person off the street would expect, because they are far enough from average, whether you want to call it SPD, want to call it just another way of being, whether you want to call it part of another disorder in most cases, or what. But we grow up, we succeed in our own way, and we can be happy.

It's not a life sentence to be unusual or abnormal.

It's just more difficult to parent, more difficult to find ways to deal with, and something that not everyone understands, both as parents and as the people who are that far from average. It is different for you and for me than a random person.

But we can do it, and enjoy ourselves despite it, and in some ways, we can enjoy ourselves more because of it, and succeed in ways we otherwise couldn't because of it.

You'll find your way.

http://turtleisaverb.blogspot.com
One autistic/SPD adult making her way through life.
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heather40 Offline
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Posts: 210
Joined: Sep 2012
#4
RE: Mom to 2yo w/sensory seeking, aversion

Beautifully said! I do not have it, my son does and I refuse to enable him. I had a brother who I now believe had SPD and my mother coddled him allowed him to do whatever ( this was an era when people didn't know what to do so he didn't get proper therapy) there was no structure , etc... He was never able to succeed, went through jobs like water, had severe emotional problems, couldn't stand to be within his own skin, etc... She never made him finish something he started, she always felt bad for him, I refuse to feel bad and do what she did, I saw the outcome of that. I don't allow her to treat my son like that either! My child will grow up to be a successful adult, doesn't need to be successful with money, but successful with life and self worth, and I need to help him to achieve that goal. I refuse to enable, I do it all through love, support, structure, consistency, etc... It is very trying at times but this child did not ask to be born, and definately did not ask to be born with SPD so we need to help make their life as better as possible for them, teach them the tools they need to help them cope. The first way to do that is to come to an understanding, once you can do that then you will be successful at helping your own child. I was so relieved to get a diagnosis when Logan was 1, that is when I was able to finally get the tools he needed to help him! I had my moments of feeling so awful that my poor baby had to live with this, but I was not going to allow my feelings to deny him help. A friend of mine always refers everything back to herself, it has NOTHING to do with her, it has to do with her child, her adopted daughter has SPD, she is 8 and is now getting help. I have told her over and over again! She frustrates me, but finally she is doing something about it! Because she is hypoactive she didn't think so, because she seems my son who moves like a rocket she didn't think it possible! She acts like this child is bed ridden, I told her there are other children who have much worse things with them, you can find the tools to help your daughter stop referring back to your childhood and focus on hers. Now I went on a rant because it irritates me! lol Sorry, anyway.... I guess my point is.... whether it is SPD or spectrum, or Autism, or whatever it may be, you take that and run, you go and find out what you need to do, use, cope. Read to help yourself cope but to be strong for your child so you can give them that chance ot lead that normal life with the coping skills they need to have a "normal" life. Please do not misinterpert my tone at all, I just know , because I have seen it with many of my friends who have children with autism who will end up in group homes when they are older, you cannot sit around feeling sorry for yourself, you have to be very active in your child's life it helps for you to feel great and your child will benefit from it. Smile
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frubsdad Offline
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Posts: 20
Joined: Jan 2013
#5
RE: Mom to 2yo w/sensory seeking, aversion

Well said TT. You couldn't be closer to the truth. This is relatively new to me as well. All of my life I've had this black cloud over my head...yet learned to deal/cope with it even though never fully understood its cause. Over the last few months I am learning a lot about our son who is diagnosed with SPD...however...in addition to learning about our son...I am learning a lot about my black cloud. In fact...it is not a black cloud at all...it is SPD. I look back and wish my folks knew and understood this disorder even though back then there was no such diagnosis.

As I learn more about my son and SPD...I learn more about myself and why I did/do things the way I do. So many aha moments...and for once...having SPD is a blessing because it allows me to see things through my son's eyes. It is comforting knowing he will always have somebody who "understands" him...unlike myself who went undiagnosed for the last 39 years. He will always have somebody to walk along beside him when things are difficult. Hopefully I can lead him in the right direction without too much of a struggle on his behalf.

In light of your son "scaling every barrier", not to be rude, I laughed out loud because my son did the same. In fact, when he was 2 we put a swinging door baby gate at the bottom of our stairs to prevent him from going up...and falling down. He was not happy about this new barrier. In fact, he learned how to put his foot through the slats on the gate and boost himself up and over so he could climb the stairs. So...I decided to equip our gate with window screen so he couldn't put his feet through the slats. So what does he do...He bites the top of the gate and begins ripping the screen and chewing the wood like a beaver. In response to this, I put foam pipe insulation around the parameter of the gate. That is what it took for him not to scale the gate to the stairs. Guests would always laugh when they saw the gate with window screen and pipe insulation around the parameter with big bite chunks in it. Try and look at the positive....one day your son will use that his "strong will" and perseverance to excel.

Don't lose site of your interests. Looking back on those years when my little guy was 2, I remember my wife and I running around in circles trying to accomodate my little guy. We put aside EVERYTHING including ourselves and individuality. It is always easy to look back and say...I should have done this or that....however, looking back, I wish both me and wifey accomodated one another more by forcing the other to have "me" time even if it is by sending them out of the house down to starbucks for a coffee and to read a magazine. Sometimes "everything" else in life needs to wait until you have your turn. The kids can feel your stress, tension, lack of vigor....which can sometimes be like blood in the water.
Welcome to the board. Again...sorry for my rambling post that goes in several different directions.
Frubsdad
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qannie Offline
Newbie

Posts: 8
Joined: Dec 2012
#6
RE: Mom to 2yo w/sensory seeking, aversion

Dear Maggie,
I read your post, and I am not a doctor, but your child sure sounds like my Everett, whom is sensory seeking in the sensory issue world. My Everett did all of the above that you mentioned with regards to your child. He is seven now, and he is excelling in a very ambitious Math and science academy elementary school. He is in first grade. The difference: when he was a total nightmare in kindergarten, the wise people in this world directed me to the right people to get an understanding of him. Sensory Issues, Hypo-to be exact. Along with some mild auditory processing issues. Everett also ended up with a very rare diagnosis called PANDAS that explained much of his behaviors as well. My point, trust your mommy radar...something is amiss.....It does sound sensory related. Ot along with auditory processing therapy made all the difference in the world. Catch them young and you can re-wire their brains. I am a firm believer in that. I have a blog that I talk about sensory issues, I share my journey with my twin boys. All that I have learned, done wrong, and most importantly, our success. I have written it in hopes that my journey can help others....qannie47.blogspot.com Have a good evening, qannie

Dear Dad, I just responded to your other post, regarding whether your child is having sensory issues or just disciplinary issues. I now just read this other post, and I must commend you, you sound like a wonderful Dad. Raising sensory kids is not easy. It is not cut and dry, or easy to understand. They are just beginning to understand just how pervasive these issues are and how to work with them. It is apparent just how much you love your child, and the dedication that you have. You don't sound like a man who needs kudo's, but I am awarding them to you. Your son is a very lucky child to have been blessed with a father like yourself. Sincerely, A mom who works just as hard....
(This post was last modified: 02-10-2013, 12:39 AM by qannie.)
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Corrinne Offline
Newbie

Posts: 5
Joined: Apr 2013
#7
RE: Mom to 2yo w/sensory seeking, aversion

Hey there.

I'm not sure where you are in VA, but I can tell you as a preschool teacher in the DC Metro area, having the official diagnosis is quite a big plus...as long as you can navigate the system. It's one of the few formal diagnosis codes they will assign to a child prior to entering school. Otherwise, for things like ADHD, they will wait until 2nd or 3rd grade and use a blanket "Developmental Delay" label. Without an IEP, allowances cannot be made...and I don't think coddling is good either, but if your child say....needs to wear sunglasses inside or use earplugs or be able to leave the room for a moment to do breathing exercises if he/she becomes overstimulated...you need a formalized plan in the public schools.

Luckily, you have a few years to get in with Early Intervention before having to deal with all that. Which means you'll have time to get to know your child's unique combination of sensory issues. Working with a specialist will allow you to find out what extra tools he'll need in a classroom environment to function.

However, in some locales, it's harder to get in with ChildFind and get what you need without the runaround. Let me know if I can help.
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