*~Spring SPD support thread~* - Mothering Forums

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#1 of 37 Old 03-25-2010, 09:00 AM - Thread Starter
 
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Hi, everyone. I thought I'd post a new thread for us...last one was from January.

I'll be back to post more when I have a quiet moment. Please join us for support, a place to vent, and to share the challenges and successes of our sensory kiddos.
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#2 of 37 Old 03-25-2010, 09:33 AM
 
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#3 of 37 Old 03-25-2010, 10:37 AM
 
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Hello everyone

I'm going to sub to the thread for a bit while we decide if this is what we're dealing with!

7.5 year old DD is getting a psych-ed evaluation for possible placement in the local private school dedicated to kids with dyslexia, ADHD, SPD etc, as the mainstream private school is not sure that it is the "right placement" for her. We've had an ADHD diagnosis from about 2 years ago, but the new psychologist is suggesting possible SPD misdiagnosed as ADHD (after meeting me and DH, she doesn't meet DD until tomorrow). Some of what we said in our interview made her think that we might be dealing with a sensory seeker, and not so much an impulsive ADHD.

So, I'd like to hang around and read and lurk while we figure it out, if that's alright with everyone

beachbaby are you the same from Eastern Shore Mamas? I would love to hear more about the resources you've found on the shore.

thanks!
Judi
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#4 of 37 Old 03-25-2010, 10:41 AM
 
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Lurkers with good intentions are welcome.

Spring seems to mean spinning. My goodness. Spinning, spinning, everywhere.
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#5 of 37 Old 03-25-2010, 01:13 PM - Thread Starter
 
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Hello everyone

I'm going to sub to the thread for a bit while we decide if this is what we're dealing with!

7.5 year old DD is getting a psych-ed evaluation for possible placement in the local private school dedicated to kids with dyslexia, ADHD, SPD etc, as the mainstream private school is not sure that it is the "right placement" for her. We've had an ADHD diagnosis from about 2 years ago, but the new psychologist is suggesting possible SPD misdiagnosed as ADHD (after meeting me and DH, she doesn't meet DD until tomorrow). Some of what we said in our interview made her think that we might be dealing with a sensory seeker, and not so much an impulsive ADHD.

So, I'd like to hang around and read and lurk while we figure it out, if that's alright with everyone

beachbaby are you the same from Eastern Shore Mamas? I would love to hear more about the resources you've found on the shore.

thanks!
Judi
Hi, Judi. Yep, that's me. I'll PM you. It would be nice to share local resources.

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Lurkers with good intentions are welcome.

Spring seems to mean spinning. My goodness. Spinning, spinning, everywhere.
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#6 of 37 Old 03-25-2010, 06:28 PM
 
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I haven't posted on here in a while. We just did a cross country move and things have been nuts. Before we moved our nuero thought that a school district eval would useful, so I called to set one up today.

When I described my son's behavior the woman on the phone (who works diagnosing special needs kids) said "Ew"

Are you freaking kidding me? She should be more than used to kids like my son. And even if she isn't, she should have the tact and basic human compassion.

She said SPD isn't covered in this state, but they'll evaluate him for ASD and that we could probably work around the diagnosis if he doesn't test positive for ASD because he has medical neurological issues other than SPD (scarring on the brain) but in all honestly I am not sure I want to go through with it at this point. I feel like I'd rather just go back to private OT. I was so turned off by her attitude. Am I overreacting?

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#7 of 37 Old 03-26-2010, 09:54 AM
 
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hi all! I'm lurking and wanted to pop in with a hello. I was at the psych's for OCD and the doctor is convinced my 15 month old has SPD. DS's ped says it's too early, and dh and I don't know what to think . I can tell you, the kid is wonderful and active! I just read a mention of a weighted blanket and plan to do some reseach. Ds can't sleep without something heavy (like me or dad) laying on part of him. lol, we are very tired parents! I will be checking in here often hoping to get some tips!
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#8 of 37 Old 03-26-2010, 10:59 AM
 
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played with theraputty today. hope it will make DS a bit more cooperative. he's been a real stinker lately. and the 3 yo has been a total handful.

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#9 of 37 Old 03-26-2010, 02:31 PM
 
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Hi, I'm Haley. My son, Cohen, doesn't have an official SPD diagnosis yet. I'm a special education preschool teacher so I have a great support network of OT's and have felt like I'm not ready to go through the evaluation process with him. He's 22 months old. He is a crazy little sensory seeker, although it's gotten MUCH better since we went off casein and soy. The change was remarkable - I was convinced by the constant head banging and jumping and extreme crashing around that he was autistic - and has truly been a saving grace for him. He still sensory seeks but I'm getting to be a pro at coming up with activities for both my kids that will give him the heavy input he needs so he can then be calm for awhile.

Anyways, thought I would introduce myself! I lurk on this board a lot so I might as well come out of the closet, no?!
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#10 of 37 Old 05-06-2010, 09:31 AM
 
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bumping. guess i need to discuss issues about my DS here and not in the general SN forum. so many people answer who just don't "get" what is happening with sensory kids. ah well.

just wonder how it is going and what is up. DS' behavior is actually getting worse these days rather than better. DH is having a really hard time coping.

i bought two books: "treating explosive kids" and "skills training for children with behavior problems." i am hoping they help, since i frequently feel like i am at the end of rope with both DS and DH.

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#11 of 37 Old 05-06-2010, 09:43 AM - Thread Starter
 
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bumping. guess i need to discuss issues about my DS here and not in the general SN forum. so many people answer who just don't "get" what is happening with sensory kids. ah well.

just wonder how it is going and what is up. DS' behavior is actually getting worse these days rather than better. DH is having a really hard time coping.

i bought two books: "treating explosive kids" and "skills training for children with behavior problems." i am hoping they help, since i frequently feel like i am at the end of rope with both DS and DH.

I saw your link to the Treating Explosive Kids site on the other thread...I watched some of the videos and have read the Ross Greene book. Really need to revisit it, though. It's just hard to break out of old patterns, yk?

Things have been really up and down here. Resorted to a behavior chart to avoid being the yelling mama. Sigh.
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#12 of 37 Old 05-07-2010, 05:00 PM
 
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Hi all,
I'm joining you. We had our very first appointment with a therapist for dd1 today, who's initial assessment of dd is some sensory regulation issues. I feel like after contemplating this possibility for a long time, we are finally getting somewhere! DD has always been a very sensitive, intense, high needs & quirky kid, and we have previously considered SPD, but were never sure it fit.

But I feel very validated & inspired (at the same time exhausted & overwhelmed, lol) by the prospect of actually being able to help dd. Help her actually be happy & relaxed & reach her potential, rather than spending so much time locked in mysterious power struggles. Sigh. So much is making sense. Getting an official SPD 'diagnosis' is practically impossible where we live, and getting OT services is similarly difficult. But I look forward to hearing from the therapist as to what might be possible.

Anyway glad to be joining you!

And Stephenie I can't believe you got an 'ew' response--how awful!
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#13 of 37 Old 05-07-2010, 10:45 PM
 
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count me in! I have SPD, my 5 yr old girl has it (and something else not yet diagnosed) and I'm pretty certain my 12 month old has it...


5 yr old is a sensory seekers but tactile defensives (and boy do I mean defensive! lol give her the wrong texture anything and she throws herself on the floor in tears!) She has been diagnosed since 15 months. she starts showing signs at birth bt got really bad at 6 months (wouldn't eat, nurse or sleep... only scream. stopped communicating and so forth.... but like I said we've yet to have her diagnosed for other things)

my 12 month old is following suit. and they both have oral defensiveness.

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#14 of 37 Old 05-10-2010, 10:53 AM
 
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(((hugs))) to you HennyPenny...I remember dd as an infant (well actually I can't really remember most of it...it is a huge blur of sleep deprivation) and it must be so hard to deal with the two of them at the same time!

I was wondering if anyone has any suggestions or resources that can be used to explain SPD to family members? I haven't shared our thoughts on sensory issues with family yet (only with my best friend who happens to be an OT & who was very sympathetic). But I would like some kind of quick & easy resource I can share with them that provides a good basic explanation. Any grandparents' guides out there?
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#15 of 37 Old 05-10-2010, 11:07 AM
 
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(((hugs))) to you HennyPenny...I remember dd as an infant (well actually I can't really remember most of it...it is a huge blur of sleep deprivation) and it must be so hard to deal with the two of them at the same time!

I was wondering if anyone has any suggestions or resources that can be used to explain SPD to family members? I haven't shared our thoughts on sensory issues with family yet (only with my best friend who happens to be an OT & who was very sympathetic). But I would like some kind of quick & easy resource I can share with them that provides a good basic explanation. Any grandparents' guides out there?
My son is a sensory seeker. When I explained it to my family, I basically said it was like my son was surrounded by a thick blanket and couldn't receive input the way the rest of us do. He needed to work extra hard to get that input and that input is what helps us as humans to stay grounded. So now, when he runs into my Mom or does a monkey walk across the floor or is walking around in gloves on a 90 degree day, they understand a little better.

Have you folks who have had a SPD diagnosis for a while noticed that your child may seek more input with weather changes. I noticed the spin spin spin comment and in my house it's more like bounce off walls, tables, people, cats. He seems to require a lot more input lately and can't seem to figure out why.

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#16 of 37 Old 05-10-2010, 12:30 PM
 
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We're pretty new to all of this. Just joined a local SPD support group and hoping to make it to a MNO soon to connect with them. The oldest of my 6yo twins was recently diagnosed. It's, needless to say, been a hard road. Last week was her first OT appointment and she LOVED it! She was a changed child, at least for a couple of days. That gives me so much hope that we'll get through this and she'll have some kind of normalcy in her life.

Yesterday was frustrating. We spent the weekend camping at a festival. She's an Irish dancer and they were having a step dancing contest and when I told her about it days ago she was totally into it. Yesterday morning she gets aboard the anxiety train which for her means she starts acting out, being really mean to her sisters, not using her words, etc. After 2 hours of telling her we were skipping the contest and going home she ends up dealing with her emotions and says she wants to do it. The kid ends up winning first place and $50, but was it worth it!?!?!?!?! I know that its still progress that she got to the place that she figured it out but its so hard with 3 other kids and another on the way to devote so much energy to just her to constantly be helping her deal with her feelings. Not to even mention all the other stuff that goes along with her sensory seeking. So anyway, really nice to have a place with like minded folks to be able share these experiences with.

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#17 of 37 Old 05-10-2010, 02:09 PM
 
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my family read "sensational kids" when my DS was diagnosed. for families who don't like to read, you can just explain briefly about sensory input and explain that your DC doesn't receive it in a normal way. the important things are that they understand it's a disorder and there are way to deal with your DC that are helpful or harmful, and they should know and understand the difference.

i have seen many families (and parents!) say really unhelpful things like "i know he's got SPD, but that doesn't mean he can't act right in public." it shows a basic misunderstanding of the disorder or a really disrespectful person, or both. KWIM?

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#18 of 37 Old 05-10-2010, 02:42 PM
 
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i have seen many families (and parents!) say really unhelpful things like "i know he's got SPD, but that doesn't mean he can't act right in public." it shows a basic misunderstanding of the disorder or a really disrespectful person, or both. KWIM?
You are absolutely right!

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#19 of 37 Old 05-12-2010, 03:50 PM
 
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This is helpful, umami_mommy. I find it tough with MIL who really cares for dd but just doesn't "get' her...her style of communication, her sensitivity & anxiety, her sense of humour. She just seems to think that the harsher & more strict the better....but that has the opposite effect on my daughter making her more stressed & upset and more defiant....sigh a vicious circle. And then there's my own mom who has a lovely relationship with her BUT the last visit she spent she was constantly trying to connect with her by tickling. Which dd1 HATES and by the end of the visit she was so mad at my mom & grumpy & miserable and my mom didn't understand why.

We take dd1 for an evaluation on Monday with our psych. OT services seem really hard to find around here but hopefully we can get a referral via the psych.
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#20 of 37 Old 05-13-2010, 12:07 AM
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Subbing.

DS is 3yo. We have no formal diagnosis. After a totally awful experience with a dev ped, I decided to take a little break from thinking about it for a while and just enjoy my child.

I've really just been doing a lot of reflecting on how to help him with what I know and we've also had a really run of good weeks with DS. Months, actually, now that I think about it. It has been about six months since we moved, so we were hoping that we had just finally adjusted and hit a baseline and could just manage.

Well, the last few weeks, he's gone really downhill again. DH wants to go the anxiety route and see a child psychologist first, and while I agree that anxiety is definitely an issue, he has sensory reactions to anxiety. He has difficulty sleeping, he chews on everything, he walks in a circle on his toes, he has terrible melting down tantrums, stops talking normally, etc. etc.

I'm also not really sure how to judge his social behavior either. He's made some big strides lately, ie actually talking to people, but he's just so....weird . I don't know how to know what's typical 3yo quirkiness, and what's off. I haven't had much luck finding kids his own age for him to play with, and watching him play with 6 and 7yo doesn't really help.

Anywho, I'm looking into an OT eval now. I'm doing okay managing him, but I still feel like he could be coping better.
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#21 of 37 Old 05-13-2010, 08:25 AM
 
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For those of you with a formal diagnosis.. who does the diagnosing? The pedi?

My daughter is a sensory seeker. I see the same thing in myself. I cannot walk through a clothing or department store without touching the various fabrics and textures.

I'm not sure if having a formal diagnose will help or not. DD already gets OT, PT, mental health therapy, and SPED in addition to all the doctor visits and hospitalizations for her Landau Kleffner, so I'm not sure I want to add yet another therapist to the mix.

I have a copy of the Out of Sync Child I'm trying to read through. Anyone else just trying to do a bit of therapy at home?
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#22 of 37 Old 05-13-2010, 09:25 AM
 
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Mindfulbirth: Our OT did the eval and our neurologist confirmed. We're doing home OT right now, but DS was much better when we had it done in office.


So it seems sensory seeking starts very early in the morning: I woke to a crash...turns out Keagan was trying to climb the shelves behind the toilet and somehow got the tank lid off and it broke into 1000 pieces.

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#23 of 37 Old 05-18-2010, 09:08 AM
 
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Mindful - our dev ped diagnosed him. It's funny. DS is adopted but I'm a total sensory seeker too. I loved the weighted objects they have for kids today. I wish I had them when I was little.

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#25 of 37 Old 06-05-2010, 05:49 AM
 
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Hi.

MY son has no diagnosis, but has had sensory issues all his life. I`m on my way out the door, but wanted to aska quick question first:

Has any of your sensory-kids trouble with showering? My son loooves to swom/dive/jump into water, and is a great swimmer. BUT..... He HATES showering. Truly and honestly hates it. It`s a constant battle. He is 9 YO, and I have the exact same struggle with him taking a shower as I did 6 years ago. He can`t/won`t tell mye why, he just says he will. not. shower. We have showering on our schedule 2 days a week, so he knows it`s coming. But he still makes a really big scene about this every time.

Any other with experiences with this??

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#26 of 37 Old 06-05-2010, 07:33 AM
 
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yeah, my son hates showering. he hates the feeling of the water on his skin. he started slowly with wearing googles in shower. he is also terrified of water/shampoo getting in his eyes. and he hates the feeling of being cold when he gets out. we solved that with a huge towel and a space heater in the bathroom. he does it now, just reluctantly.

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#27 of 37 Old 06-05-2010, 09:00 AM
 
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yeah, my son hates showering. he hates the feeling of the water on his skin. he started slowly with wearing googles in shower. he is also terrified of water/shampoo getting in his eyes. and he hates the feeling of being cold when he gets out. we solved that with a huge towel and a space heater in the bathroom. he does it now, just reluctantly.


Wow. Just.. wow. THis is EXACTLY what my son says. Word by word. But he loves going swimming. He has no problem getting wet/going under with his head in the pool. Thank you so much for answering!

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#28 of 37 Old 06-05-2010, 09:11 AM
 
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yeah, my DS loves to swim too, except when he was a baby he hated it. and when he was learning to swim he needed nose plugs and goggles. he was so busy being terrified of getting water in his nose/eyes he couldn't relax. but now he doesn't need them. he is very happy in the water @ the pool. sometimes i ask him to shower in the locker room, that sometimes goes over well. sometimes not.

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#29 of 37 Old 06-05-2010, 06:01 PM
 
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Yeah, goggles were a must for years. He started swimming when he was 5, and needed the googles all the time until this year. Now he can swim without them, but absolutely prefers to have them on. Last week he got really panicky when he tried swimming without them and his eyes started "burning". (His words.) He yelled at me (VERY unlike him), rushed out of the water, cried and was pretty miserable for atleast 10 minutes. Poor guy.

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#30 of 37 Old 06-09-2010, 05:49 PM
 
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I think I belong here. DD is 16 months and we will have her first OT eval later this month. She is heavily sensory seeking, nonverbal, high-energy, unaffectionate...the list goes on. For those of you who've had an eval on a toddler, can you give me an idea of what to expect?

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hi all! I'm lurking and wanted to pop in with a hello. I was at the psych's for OCD and the doctor is convinced my 15 month old has SPD. DS's ped says it's too early, and dh and I don't know what to think . I can tell you, the kid is wonderful and active! I just read a mention of a weighted blanket and plan to do some reseach. Ds can't sleep without something heavy (like me or dad) laying on part of him. lol, we are very tired parents! I will be checking in here often hoping to get some tips!
DD needs weight/pressure to sleep too. It would be cruel not to give her that pressure, not to hold her arms down for her, if that makes any sense? I think I would get an eval. If you think something's off, get it figured out, you know? You're with him, you know if something is not right.

I've been reading Sensational Kids (I think that's what its called) and The Out-of-Sync child, but I find those are really geared toward kids that can vocalize their thoughts/feelings. Any resources for nonverbal likely-SPD toddlers?

Thanks for letting me share.

justKate is offline  
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