*~SPD support thread for December~*

[rainbowmoon]

Can we start a support thread for those with SPD kids?

I am having a really hard time right now and have virtually NO support. I know there must be others in the same predicament. Let's chat and give each other support here.

[InMediasRes]

We're here!

There was another support thread, but it got buried a while back.

Can I start the discussion? There's something I've been thinking about a lot lately.

What does everyone with SPD kids do for education? I was not planning on homeschooling, but I'm now deciding to be open to it if it feels like that's what DS needs. I'm curious what other families do and why/how it works out.

I also wanted to report a huge breakthrough with DH last night (I had posted a few days ago that he has been very unsupportive about this issue). Andrew was running around like a wild person and doing all his typical seeking stuff because he was EXHAUSTED. DH suddenly says, "Where in the world did all this energy come from?! I thought he was tired!" I opened up Out-of-Sync Child to the seeking stuff and DH goes "Oh. Huh. I guess you know what's going on then."

I think that's about as close as I'm going to get to support right now. It's a start!

[nhoutdoormama]

I'd like to join in! I think our son is struggling with some SPD issues. We incorporate a sensory diet into our daily routine, which we find very helpful. We had him evaluated with no real finding, which was a bit frustrating for me. As far as school goes, we are still up in the air. He is currently attending a wonderful pre-K, but we do consider homeschooling. Our son is also pretty advanced academically which can make things a bit more challenging for him. We can go for days with no real issues, and then POW! Yesterday was a rough one. I would love some support. Be well, Mamas, remember to take care of yourselves today.

[beachbaby]

Subbing! Will be back later to post when I have more time. mamas

[rainbowmoon]

InMediasRes- thats awesome about your DH! it's so nice when you finally get validation.

nhoutdoormama- I wonder if you are near Vermont at all? (I am looking for resources in our area) Have you ever heard of www.kizplay.org ? (it's in Concord but they have a center in Londonberry as well) I am seriously considering taking DS there if I can't find a place or OT local experienced with SPD!! (it's a little over an hour and a half from us).

My DS has not been evaluated formally. We worked briefly with an OT before moving across country but that's it. I am wanting to get him formally diagnosed now but am just looking for the right place to do that.. How did you mamas get your child's SPD dx? (through your pedi, EI ,privately or the school system?) I am looking into a few OT's currently and weighing my options. I am just at a loss and have NO support whatsoever. Or so it feels!

We are homeschoolers. He just started DS at HS co-op class last month and it's not going well at all. He likes it alot but is having major issues with the teachers and the kids due to his lack patience, explosive temper and self control. He hits, tantrums, yells & throws things when upset and is just VERY overstimulated there which results in behavioral issues. Hopefully it can be worked out but I am ready to pull him out until we get his behavioral issues resolved. I am afraid that will crush him though and give him a complex so I am not at all sure what the right decision is, just hoping we can get him adjusted but thus far it's been a sort of nightmare. I am starting to really see he needs help from someone experienced with SPD children.

From what I can tell (and from the SPD checklist) he is hyposensitive in ALL areas and a major tactile seeker. I tried a sensory diet of sorts but got out of that rhythm unfortunately. We need to get back into that ASAP. I find the weighted backpack to helped immensely among other things. I just have no idea how to integrate these types of things into his HS co-op class.


Feeling really alone in all of this. I get the eye rolling from family and just the general feeling that everyone thinks it's a discipline problem (it's SOOOO not, believe me I've tried EVERYTHING!).

[InMediasRes]

Rainbowmoon - As I understand it, a developmental pediatrician would be the one to make a diagnosis, although an experienced OT should be able to say yes or no. We are on a wait list for the dev ped until February . Our pedi agreed that an eval was in order, and she was the one who gave us the referral for the dev ped. DS is 2.5 though.

Ooooh, we're talking profiles? DS is a sensory seeker, major tactile defensive in some areas, auditory hypersensitive, and emotional regulation problems. We're also starting to see motor planning issues as well, and I think he might have auditory processing difficulty, but it's hard to tell between that and normal 2yo "selective listening".

[rainbowmoon]

Thanks mama! Good to know about the developmental pedi. let us know how it goes for you!

oh and can't a psychologist make a diagnosis? I thought if we went through the school system that was how they did it? Maybe I misunderstood or is it different in each state?

I just got off the phone with a therapist who is local and her daughter goes to the homeschool co-op too. She observed my DS for one day already so it's a start and I think she will have some good insight with his issues. I think she is going to be VERY helpful with our situation. We are going to meet in the next week or two and make a plan and start some therapy for him. (She's not an OT but does behavioral/emotional therapy which is needed IMHO as well. She also told me if I do want to go ahead with an eval she could lead us in the right direction to make that happen. So, I overall just feel SOOOO much better after having talked with her so that's a positive! yay!

[earthmama369]

I propose a monthly support thread.

To answer the schooling question, we're homeschooling. If you want to break it down even farther, we're eclectic unschoolers at the moment. DS (3.5) has SPD, like his mama. He really, really does not enjoy group situations or classes right now and he has a lot of moving to do during the day. We're "discussing" with the school system right now, because they want to enroll him in full-day preschool before providing him with OT services, and that would be the worst thing for him right now.

I've pulled him from classes this semester and next and I've stopped asking him to go to group activities whenever possible. We're just taking a break and letting him recalibrate. We do a lot of outdoor time, more screen time than I ever thought I'd do with a child of mine, and the house is filled with learning opportunities for when he wants to take advantage of them. I don't push it. Partly because he's only 3, and partly because his personality really doesn't respond well to enforced structure or being pushed. He's responding really well to this. He's picked up a bunch of letters and has started writing of his own volition, is counting past 20 and doing basic addition and subtraction, and likes to start his own activities and keeps himself happily busy most of the time.

I'm not sure what the future holds for us in terms of schooling, but continuing to homeschool is at the top of our options.

[Qerratsmom]

subbing! will be back in major need of support!

[Stephenie]

I am all for a support thread!

We just finished our eval with private Ot's. DS is a seeker but also both hyper and hypo sensitive to tactile and auditory sensations, is under responsive to vestibular sensations and has some social/emotional regulation issues. He's also got some low muscle tone issues. We'll be going to OT 2x's a week for awhile and hopefully move down to 1x a week in a few months or so.

We homeschool/ plan on it for later. There's not a lot of school at 2.5, but he likes the structure of some daily routine and planned activities like crafts and nature walks. We plan on continuing homeschool as long as it works for our family, possibly all the way through high school. He's really smart (IE knows a lot of what's required for kids to know on completion of Kindergarten) and when you combine that with a kid who can't sit still, you're just asking for trouble. We've planned on homeschooling since he was a newborn, but the more he's grown the more we've solidified that decision. At this point, school would be a disaster for him.

[Linda on the move]

Hello! My sensory DD is 13 now. We homeschooled in a relaxed way until this year, and now she attends a small public school. Homeschooling was great for a long time, but now there are things she needs to work on that she really can't at home -- like how to speak up for herself and how to function in the larger society. The school she attends is awesome. It has tiny classes, a caring staff, and a wonderful social worker. I ruled out private schools for now because of lack of support services.

Homeschooling worked well for a long time for her. Our homeschooling style was "whatever works for now." She reads really well and does fine in all her other subjects. I think that because we were able to make things work for her, she is most likely doing better academically now than she would have if she had attended school the whole time.

One problem with homeschool groups is that you are usually just dealing with moms, not professionals, so they most likely don't have a clue about kids who are quirky. I also found many homeschool moms to be kind of competitive about what their kids are doing and how perfect they are.

Swimming and tumbling worked out to be the best outside activities. She was a competitive swimmer for a few years. She was getting GREAT sensory input while being on a team with other kids. It doesn't get better than that!

[umami_mommy]

we are focusing on physical activity right now. DS is resistant to most types of
"learning." so i have found that the more vigorous exercise he gets, the better he is emotionally and the better he sleeps. he resists it, but i strong arm him into going to the Y 3 times a week and filling in from there with wii fit and other activities.

he's like 2 different kids when he gets enough heavy work. (ie swimming) one kid i can't stand and keep asking myself "is this my kid?" the other is sweet and cooperative and loving. amazing transformation.

[rainbowmoon]

nhoutdoormama- I got your PM And THANK YOU soooo much! I had written a long response and my computer crashed just as I was sending! ugh! Anyway I will rewrite it later! Just wanted to say thanks though! Much appreciated!

linda- thanks so much for sharing about your daughter. I really have had my heart set on homeschooling and I do think it will be best for our family. At the same time with a child that has these issues it is really hard and confusing whether to know if it's the right choice. Well at least I question it and the part about him functioning in society. He is just so unlike any other child I know his age! It is scary and exasperating.

earthmama, quertasmom and stephanie !


My DS likes to bump. It's soooo annoying and he at times will just start doing it to everyone around him. We have directed him to his bedroom and he likes to sort of bump the side of the bed. Does anyone else's kid do this? What can I do to get him to be more aware of others space? Do you all think this sounds like a sensory issue or something else?

That brings me to our other issue. He does not recognize social cues! I have no idea how to "teach" this though other than to make him look at my face and try to express it in some dramatic fashion! Don't know if that is going to work though. Any ideas?

umami- my son loves heavy work too! I try to get him to be my "helper" and it works amazingly well. I sooo know what you mean about being 2 different kids! He can be the sweetest, smartest, gentlest and loving person and then other times seemingly out of nowhere become violent, rude, loud, unreasonable and mean ESPECIALLY if something frustrates him all bets are off. ughhhhhh!!!

Certain social situations tend to set him off too as he gets overstimulate easily.

[Linda on the move]

Originally Posted by rainbowmoon

linda- thanks so much for sharing about your daughter. I really have had my heart set on homeschooling and I do think it will be best for our family. At the same time with a child that has these issues it is really hard and confusing whether to know if it's the right choice. Well at least I question it and the part about him functioning in society. He is just so unlike any other child I know his age! It is scary and exasperating.

Do what works for now, don't feel like you have to figure the whole package out this year. My DD didn't start school until shortly before her 13th birthday. It would have been a disaster for her at 5. This is really the right time for her to branch out -- we didn't have to start this at 5. And since SDP without another dx doesn't warrent special services from school, unless the school just wants to be nice about (ours does) teachers kind of have their hands tied.

Also, there is such a push for early academics these days, and while I think they are damaging for many kids, they would have been a disaster for my DD. She didn't need to be doing that same work that they other kids were in K, 1st, and 2nd, to do just fine in 7th.

some advice -- Find professionals to help -- don't feel like you have to do everything yourself or be everything to your child just because you are homeschooling.

Besides the homeschool co-op that isn't quite working, what else is he involved in? A one hour class through parks and rec with a teacher who is used to working with kids with different temperments might work better. Are you guys able to play outside where you are right now, or do you have indoor things you can do that are sensory rich? An indoor pool at a Y? A big basement to make into a mini-gym? I always found winter harder with my DD than summer. It was just harder for her to get what she needed.

[rainbowmoon]

Thank you s much LINDA! I really value your opinion you always give me such good advice! You are right there's no reason to push anything for this year at all..

Yes, he is involved in different classes and he hasn't had the issues he is facing currently so that's just why I know it's not working but I just want to know WHY and haven't figured out if it's just the style of the class or the environment (a little of both I'm guessing, but it's just been kind of shocking to me because he hasn't had these issues to this extent previously!) he usually is so happy go lucky, yk?

He does play outside for hours everyday and our good friend teaches nature/ art workshops that he's attended and another class at a farm school... I think he is just not ready for the HS co-op personally an it's just not what he needs maybe. I just can't put my finger on why it's not working. But I am really honestly thinking about pulling him out until Spring at least when he can join the wildnerness group and have some therapy in between now and then.

We do have other options so I so I don't know why this is stressing me out so much. I think the main thing is his younger sister is doing great there and we do plan to continue sending her. I am afraid it's going to cause alot of issues at home w/ jealousy in a way. But then again he is a pretty indifferent kid at times so maybe there is nothing to worry about if I just find him something else that he likes. (the problem is we moved so the classes he formerly took are over an hour and a half away and I haven't been able to find anything similar!) They do have other classes at the HS co-op it seems so maybe we will just not do the "Kindergarten" one and come up with something else like singing/just the art day or cooking class. somewhere not so long and just more comfortable for him. I am going to request a meeting to discuss it otherwise we are meeting the behavioral therapist next week.

Thanks so much for listening to my rambles mamas!

[beachbaby]

Hi mamas...thanks for starting the support thread.

Our background...DD just turned 4...she's overresponsive to light, sound, and sometimes touch. She also has low muscle tone, anxiety (mostly social)...possibly HFA/Aspberger's....We've been working with EI for a few months; just started play therapy for the anxiety piece, have an OT eval next week, and are 6 months away from a holistic dev. ped appt.

Like the PP, we've been making swimming a priority for the past week or so and it's helped tremendously.

As for school...Our EI coordinator is really pushing preschool for DD. At first she seemed surprised and somewhat dismayed that DD had never been in childcare or pre-K. Then, after meeting DD, she agreed that preschool would be a disaster. Then, she began pushing it, saying the only way the social anxiety and some other behavior issues would resolve themselves would be with exposure (school). I disagree that exsposure alone will make a positive difference. So, right now I am focusing on getting supports for her (play therapy, OT, proper evals) and going from there. We live in a pretty rural area without many choices for alternative education. I'm open to homeschooling for the near future.

DD calling...will write more later. mamas

[meg-momto2]

hi everyone. DS has tactile and audio defensiveness and is sensory seeking. his school is evaluating him and we're starting our private evaluation next month.

speaking of school, i despise ours for so many reasons. DS just can't handle the restrictiveness of it. i would love to home school but i don't think i can do it. we might look into Virtual School for next year. the principal was kind enough to switch him to the EI class which made a world of difference for him. his last teacher segregated him to a table, alone, because he was poking the kids his next to him.

he's come along way in the last year or so. i can wash and brush his hair without a meltdown although he still yells at me a lot. he doesn't run away screaming when i vacuum, at least not in fear. he still hates public bathrooms with the loud toilets and hand dryers. i still have to buy his under a size to big and cut labels.

i think DD might be showing some signs of audio defensiveness. she's always had issues with her ears. she would cry and scream if the wind blew on them. recently she's become sensitive to sound. she hates when i sing to her and screams at me. she's also been saying "huh" and "what" a lot in the last few months.

[nhoutdoormama]

Rainbowmoon, so glad you received my note- please feel free to PM me anytime!

Swimming has been wonderful for us, too. We are going to attempt a gymnastics class again, we'll see how it goes. Tune in this time next week...

Our oldest son has just turned 5 and we think he is struggling with auditory processing issues primarily, with additional difficulties with fine motor planning. He attended a co-op last year and it did not go well at all. We saw behaviors and issues we did not see elsewhere. The teacher, although experienced, was not a very good educator, IMO. We withdrew him from the program and participated in homeschool activities until he requested to try school again. His current school is inclusive and incorporates sensory activities into the daily (emergent) curriculum. His teacher is very well educated in SPD as well as other educational issues and he is thriving. The director told me that 50% of the families in the program feel their child has sensory "issues"!!

I have done so much interviewing/questioning I'm sure some have thought me over the top, but finding a teacher who really knows their stuff has been essential. As far as schooling goes, it is like night and day, and the rewards remarkable.

Blessings, Mamas, and thanks for reminding me that I'm not alone in this--

[kalynnsmom]

Glad another thread is up!

My DD is 7. I'm pretty sure that Kalynn has something sensory. She was diagnosed with ADHD by 3 different doctors, so I'm not sure if it truly is ADHD or if it's just SPD or if it's both. I brought up her sensory issues with the neuropsych but she thought it was part of her ADHD.

Anyway, it's getting frustrating lately because I feel like hardly anyone is taking me seriously. I get the "everyone has sensory issues" bit quite a lot. YES, I know that we all have sensory issues, but not to where you can't cope. Something is just "off" with her.

I believe Kalynn is tactile defensive, and is very sensitive to sounds. She also has anxieties around crowds, and has trouble reading social cues as well..

[InMediasRes]

To the mamas who said their kids had trouble reading social cues, could you be more specific? I have thought that DS was "off" socially, but he still interacts, so I'm mostly just trying to figure out what he needs to be comfortable in social settings. He has incredible eye contact, and is very sensitive (almost too sensitive) to other's emotions. But he is just wacky around other kids. For instance, whenever we first start interacting, he runs around like crazy chanting nonsense words like "Upagorga" over and over and over again until he's burned off the steam and can interact more normally. Even then, it is mostly just talking in the vicinity of other kids rather than interacting with them. I'm given to understand that this is partly age and shouldn't be worried, but it just seems different than what other kids his age do. He does interact well with us, and with his sister though.

Thanks for all the responses about school. I had seriously not considered homeschooling, but I didn't think I would have a kid like DS either (or that they existed ). My sister, after all my talking about SPD, has come to realize that she probably has it too (and I have thought so too, since reading about it) and she had an awful time in public school. She has always been a very poor student. I really feel like a more tailored environment would have helped her, so I think I might be looking that direction for DS. Of course, I have to get DH on the same page about SPD before we can start talking about school anyway.

Having an "off" day today. I can't figure out what it is, but we're headed to the dinosaur museum today. There's a giant sand and water table there, tons of ramps to run up and down, and a big sand pit where the kids can "dig" for dinosaur bones. DS loves it, and he always is doing really well afterwards. I'm going to look into swimming this week.