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New here....
Author Message
Steph05 Offline
Newbie

Posts: 5
Joined: Feb 2013
#1
New here....

Hey All!

New to the forum. Trying to reach out. I've skimmed through a handful of posts and there is still a LOT of "lingo" that I'm not familiar with so it seems a bit overwhelming, but not any more so than my sweet little girl...

My daughter is 7 1/2. We are still without an "official" diagnosis (which leaves me feeling like I STILL haven't gotten any validation, at times). She shows a LOT of symptoms of SPD (sensation seeking as well as aversion) as well as ADD (she is lacking any of the hyperactive characteristics that may relate to adHd).

She is an incredible artist and never stops drawing. She has the biggest smile. I call her my "flower child", she is SUCH a bright light and loves to laugh, dance, and sing.

But she has a meltdown if the seams on her socks aren't perfect.

And refuses to flush the toilet. Flat out REFUSES.

And will only eat about 5 different foods, no matter how much I bribe her.

And everyone looks at me like her enabler. Because I don't MAKE her flush that toilet (ESPECIALLY in public bathrooms) or wear that certain pair of socks or the jeans that are "scratchy" etc etc.

I'm burnt out, and just looking for some hope. Looking for someone that's been there. And looking for someone that agrees with me when I say that whatever it is about her that causes her so much anguish when it comes to that pair of socks, is beyond her control. I cannot find it in myself to believe that it's an act of defiance (her teacher suggested ODD, and I nearly choked on my milk).

So yeah! That's it in a nutshell!! Thanks so much in advance for your time!

-Stephanie
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Tuttleturtle Offline
Regular

Posts: 223
Joined: Jan 2012
#2
RE: New here....

I have an ODD student - there's a huge difference between the ODD and the meltdowns because of routine requirements or hypersensitivities.

Meltdowns are harsh, and very much not understood. Those of us who meltdown are looked down on for having meltdowns. I do meltdown still in my 20s, and have been dealing lately with some with major complications in my life because of people not understanding meltdowns.

But if she specifically reacts to specific sensory input, no, it doesn't sound like ODD, it does sound like SPD.

People here have been there, either as parents, themselves, or both.

For where to start:

-Books:
I really like Sensational Kids. The Out of Sync Child is often recommended but I keep not getting around to reading it.

-Diagnosis and treatment:
Occupational Therapists are where you go to for this. OT is really useful. I've been going to OT and its definitely helped me.

-Coping skills:
Lots of people here have been working on developing those. They can be how they have been coping with having a special needs child, or they could be something like "My child has issues with socks, do you have suggestions?"

http://turtleisaverb.blogspot.com
One autistic/SPD adult making her way through life.
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Sunflower Offline
Newbie

Posts: 2
Joined: Jan 2013
#3
RE: New here....

Steph I do hope you check back here and see my post maybe we can chat too as I have a very similar situation to yours. My daughter is also 7 plus years old and has so much difficulty with clothing that she often wants to stay in something for days at a time and showers and hair brushing and bedtime are very difficult too. But funny too that she loves arts and crafts and is quite good at it and is a pretty typical child in other areas although I am feeling also very 'burnt' out too parenting her as these episodes can be so draining. Please are you doing OT and have you found it helpful?
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danicingqueensmom Offline
Newbie

Posts: 1
Joined: Feb 2013
#4
Music  RE: New here....

AngelHello! Everyone I too am new to the group. I have a 12 yr old that has been Dx with SPD, she had the signs for many years but my Pediatrician did not think so. I have had her tested this year and she is in dead positive. It seems once she hit middle school things even go more difficult for her. She is a very bright student that dances toe, tapp, and jazz as well as plays the piano. She has maintained straight A's until this year and has mostly A's with 2 B's. Tactile is her biggest difficulty and seems to be getting to be a bigger problem that I am afraid is going to take over her life. She has the potential of such a bright future but not with the SPD and refusal of dealing with it. We have tried therapy, OT, and I am afraid due to the lack of education of our area they have ruined the trust and her hope has been lost. She is 62 days without a bath. She is unable to notice her smell. She will not wash her clothes either. She curls her hair and makes herself look nice and puts makeup on but does not believe she smells or carries the odor she does. Mom knows nothing and friends have not informed her yet. I am so worried about the potential of health implications. She is going to become ill. What can I do. She will not agree to get help anywhere. Her answer is I will fix myself.

(02-13-2013, 07:39 PM)Steph05 Wrote: Hey All!

New to the forum. Trying to reach out. I've skimmed through a handful of posts and there is still a LOT of "lingo" that I'm not familiar with so it seems a bit overwhelming, but not any more so than my sweet little girl...

My daughter is 7 1/2. We are still without an "official" diagnosis (which leaves me feeling like I STILL haven't gotten any validation, at times). She shows a LOT of symptoms of SPD (sensation seeking as well as aversion) as well as ADD (she is lacking any of the hyperactive characteristics that may relate to adHd).

She is an incredible artist and never stops drawing. She has the biggest smile. I call her my "flower child", she is SUCH a bright light and loves to laugh, dance, and sing.

But she has a meltdown if the seams on her socks aren't perfect.

And refuses to flush the toilet. Flat out REFUSES.

And will only eat about 5 different foods, no matter how much I bribe her.

And everyone looks at me like her enabler. Because I don't MAKE her flush that toilet (ESPECIALLY in public bathrooms) or wear that certain pair of socks or the jeans that are "scratchy" etc etc.

I'm burnt out, and just looking for some hope. Looking for someone that's been there. And looking for someone that agrees with me when I say that whatever it is about her that causes her so much anguish when it comes to that pair of socks, is beyond her control. I cannot find it in myself to believe that it's an act of defiance (her teacher suggested ODD, and I nearly choked on my milk).

So yeah! That's it in a nutshell!! Thanks so much in advance for your time!

-Stephanie

Sorry Stephanie,

I am also new and not the best at the forum thing. I am an ICU nurse of 25 years so computers and I sometimes have our times. I have to tell you. Your little girl sounds a lot like my daughter did a few years ago so I say to you stick with your gut and get going with the treatment early while she is still at the age you have more control. I spoke with Dr. Lucy Miller what a wonderful lady from the Star Center in Colorado. It is so important to get the treatment started when they are young. I am at the hardest time. It is still not to late but we are waiting on the time when my daughter is also willing and wanting to go for treatment for for a 12 year old that is such a hard time in general. You are still at the molding time. Get her into a good OT. All of what you are seeing are big hints. SPD read on it all. I spend day and night reading all I can. It is such a left behind under-diagnosed disorder. Our poor kids. I will not give up on mine. I waited 11 years to adopt her and I will get her through this tough time. I love her to much as I am sure you do to. People just don't understand. You can not disciple these kids the same way. They map a different way.
(This post was last modified: 02-18-2013, 04:32 AM by danicingqueensmom.)
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