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View Full Version : Frustration re: getting in a groove with my SPD kiddo



raegan
01-23-2011, 07:21 PM
My 5yo (will be 6 in about 2 mos) has SPD (Sensory Processing Disorder)--Hyposensitivity to touch, struggles with proprioceptive awareness & bilateral coordination. He also has an exceptional need for visual stim, and I swear he has an undx'd auditory processing thing going on. He also needs speech therapy for tongue thrust, but that's not really an SPD issue.

We had gotten into a bit of a groove after summer, but he didn't want to do anything but math. So that's what we did--RightStart is a perfect fit for him so far--and he played a loooot, as any good 5yo is apt to do. We also ran out of OT visit coverage from our insurance, but since it was warm enough to play outside all the time, it wasn't really an issue. Plus, he moved up from a tot gymnastics class to a beginning boys' class--at a "real" gym, so he's learning true men's gymnastics and apparatus.

Enter cold weather, not as many chances to get outside, and a developmental leap of some sort that has changed which of his issues have come to the fore (and therefore highlighted the fact that he hasn't had OT in months and doesn't have the tools to deal with these newly-emphasized issues). I think one of my biggest problems is with his visual stimming--he can't get enough tv, and turning it off "to get something done" just results in a major backlash on most occasions. We started a new HS breakdancing class, and his bilateral coordination issues are seriously more noticeable than ever--he's struggling waaaay more with it than I thought he would. With the new year, we have a fresh batch of unused OT visits with our insurance, and his therapist recommended a different type of therapy, Interactive Metronome (http://www.interactivemetronome.com/default.aspx).

I hope once we get some of this new OT under our belts, we can get back to his stated goals for school: learning to read, to write better (HWT), and continue with math. I'm not trying to push him into school--I'm of the opinion that the most important things are learned through play, particularly at his young age. But he wants to learn to read, and is showing all of the signs of trying to figure it out on his own. I don't want him developing bad habits, so want to get him started on the Funnix (http://www.funnix.com/) curriculum sooner than later. (I apparently DID develop bad habits teaching myself to read at age 4, as reading is very tedious and slow for me; I recently found out the way I read is indicative of a type of dyslexia, which was a revelation for my straight-A overachiever self.)

Am I deluding myself that it will *ever* NOT be a struggle to do schoolwork? Or is there at least some seed of truth to my hope that his new OT therapy might calm the waters enough to wade into more formalized learning?

And does anyone else have experience with the Interactive Metronome therapy?

Kristina Breece
01-23-2011, 07:37 PM
I can't be of any help at all, but I was wondering... what led up to his SPD diagnosis? We've had some issues with DS (4) that have had me asking if he could have something more going on than just "being 4." DH thinks I'm nuts, and that to take him to a behavioral therapist (just for an initial assessment, even) is to "label" him for life. My parents think I should just spank him every time he has an "inappropriate reaction" to his situation. :rolleyes:

raegan
01-23-2011, 08:39 PM
Well, the proverbial straw was when he was 3yo--one day when he was particularly "nuts" and was running down the hall and literally throwing himself into the wall. I asked him what he was doing, that it couldn't possibly feel good. His response: "But it DOES feel good, mommy!"

He has always been a balls-to-the-wall kind of kid, and a couple of friends with whose kids he loved playing (they were intense kids, a couple on the spectrum, and he didn't overwhelm or hurt them when playing) gave me some suggestions for doing "sensory diet" activities. They never mentioned SPD, but when I googled "sensory diet," it was obvious they were trying to point me in that direction without being too direct. A friend of mine with 2 on the spectrum often tells how others "knew" about her 2 boys, but she couldn't understand what they were talking about until she was mentally ready to accept the idea. (and for her autistic child, even the dx was a whole other smack to her head, yk?)

http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html is a good checklist to look at (or just google "spd checklist" youself for more) to see if the issues your child has fit into SPD, and if they're interfering with the enjoyment of life in genera. My son's particular--and unusual--blend of issues meant he was hurting himself ALL.THE.TIME. Or rather, injuring himself, because he doesn't realize he should be in pain when he does it, lol. I still have friends and family members who don't think anything is out of the ordinary, but they're not around him all day long. Even my mom (with whom I have a zillion other issues and who usually poo-poo's anything i say--that I'm Celiac, for instance :roll: ) says that, while my brother's son is full of energy at times, his energy runs out. He stops himself before doing something dangerous. Khary's energy doesn't run out, and he's just now developing other psychological signals that tell him it's not a good idea to leap off of treehouses instead of using the stairs/ladder.

ESPECIALLY if you're HS'ing, it's not a label. I tell people it's a framework by which to understand the everyday struggles your child is going through, and it leads you to the tools to help him meet his needs safely and cope with life when it gets overwhelming. (or underwhelming, in my son's case.)

I've also found it interesting that most of the discussion I've seen around SPD issues revolves around hypERsensivitity--where the world is too bright/loud/scratchy/etc for kids. It's a whole other ball of wax to deal with kids who cannot get enough. His OT has even suggested getting him into a tackle football league whenever possible. (he's really athletic & as a fb coach's kid, I'd love that, of course!)

Oh, another great resource is http://www.out-of-sync-child.com/ . The Out of Sync Child (http://www.amazon.com/Out-Sync-Child-Recognizing-Processing/dp/0399531653) and The Out of Sync Child Has Fun (http://www.amazon.com/gp/product/0399532714/ref=pd_lpo_k2_dp_sr_1?pf_rd_p=486539851&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=0399531653&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=04ZQNR5EZBG8RV6S2RAS) are fantastic. I returned my copies to a friend thinking I'd pick my own up at Half Price Books, but darnit if those haven't shown up at my HPB store! D'oh!

I just noticed today that one of the members here runs http://www.sensoryflow.com/ which looks really helpful, too.

raegan
01-23-2011, 08:48 PM
also, we got a referral from our PCP to have his assessment performed at our local children's hospital. they sent the assessment and recommendation to our doc, who then gave them back a Rx for treatment for SPD. what a rigamarole, but that's how it's done around these parts. and the assessment had my son giggling uncontollably because it was all just playing. He had an absolute blast. (again, not sure if some of this is because he's hypO; I'd imagine if a child is easily overwhelmed, the process might be less fun, yk?)

I've had several friends who are schooling as usual, and I've told them that the dx will help get their kids an IEP so that they get to fidget more, to sit on a special seat cushion, or whatever so their particular needs are, so that they can better handle a classroom setting. Otherwise, their child is going to be the "troublemaker," and that IS a label that tends to stick. ;)

MarkInMD
01-23-2011, 08:59 PM
I can't be of any help at all, but I was wondering... what led up to his SPD diagnosis? We've had some issues with DS (4) that have had me asking if he could have something more going on than just "being 4." DH thinks I'm nuts, and that to take him to a behavioral therapist (just for an initial assessment, even) is to "label" him for life. My parents think I should just spank him every time he has an "inappropriate reaction" to his situation. :rolleyes:

With kids like that, almost nothing will work, and spanking certainly won't. When our 5yo (starting when he was 4) persisted in hitting us when he didn't get his way, for a time we tried a swat on the bottom, but only in those situations. What did he do next time? Hit us harder. It was obvious that wasn't going to work, which was good news for us because it's just not our mode of operation. Kids like that are just handfuls, and a spanking is about the worst thing to do, because the message they get from that isn't "If I do this, I'll get whipped." It's "If they whip me, I'll whip them worse." I don't have any advice other than to say patience is about all you can use, and don't beat yourself up if it sometimes runs out.

As for "labeling" him, if the situation gets to the point where he'll need therapy, he'll need that label. However, it's important that you don't use the label as a catch-all for giving up on strategies to deal with it. Sounds like you wouldn't do that, anyway, though.

As for all the OT stuff for Khary, I can ask my OT wife, who pops into this board from time to time. She might know something to help.

dbmamaz
01-23-2011, 09:01 PM
Ok, first of all, imo, 5 is young to have 'educational goals', esp if there are other issues. I hear story after story about homeschoolers teaching themselves to read and being voratious readers - your dyslexia was not CAUSED by you teaching yourself to read.

My two older were ready to start reading right before kindergarten, and reading at a 2nd or 3rd grade level by the end of kindergarten. My younger is almost reading at a second grade level now that he is in 2nd grade. Your goals wont change when he is developmentally ready to read. Plus, just because you think a reading program is a great program, doesnt mean it will be the best for him. PLUS . . . you should be ready for him to also be dyslexic - i'm pretty sure that runs in families.

There is a school of thought among homeschoolers that 'better late than early' - that was the title of a book. I read another book by the same authors, and its helped me a lot to relax with my youngest. He is extremely bright and motivated, but he does not seem to be the kind who you can sit down with a program and teach in a linear fashion. He has to do what he wants to do, or he just wont do anything.

Ok, and dont take this wrong - but none of my kids could have handled break dancing at 5. Ok, i have a freind who has a kid on the spectrum and she takes him to constant OT apts, because she wants to address every single issue, and if that is what you want, thats fine - but its also ok to be clumsy (at least thats what I tell myself . . . ). Is he enjoying the class?

I guess what i'm saying is that it might not ever get to feel like a groove to you. You might need to follow him more than you follow general guidelines or your own timetable. Oh, and my kids always throw a fit when I try to turn off electronic entertainment - so its off from 10 am to 3 pm every day so we can do school. My younger one has a lot of free time during those hours to play with toys or draw or whatever he wants, but its much easier to get them interested in school work if its actually the most interesting thing around.

I know its a lot, and its a challenge - but often the biggest challenge is for us to learn to follow their lead rather then for us to figure out how to make them follow our lead, if that makes sense?

Kristina Breece
01-23-2011, 09:27 PM
ESPECIALLY if you're HS'ing, it's not a label. I tell people it's a framework by which to understand the everyday struggles your child is going through, and it leads you to the tools to help him meet his needs safely and cope with life when it gets overwhelming. (or underwhelming, in my son's case.)

That's what I thought. I don't need a label... I need to find a better way to help him deal with life every day, and for me to deal with him. I don't care what we call it, something has to change. He can't stand loud sounds (we live across the street from a railroad track-- this is not a good thing), his social cues are off (the slightest sound of disapproval in your voice sends him into uncontrollable sobs and shaking, almost like a beaten dog), and his reactions to the things that set him off are extreme. He will try to physically punish himself when he realizes he's done something to hurt someone. It's not out of the ordinary for him to bite himself if he accidentally knocks his sister over. (She's 23 pounds at age 2, to his 58 pounds at 4... this happens often.) He just doesn't seem to "get it," IYKWIM.

I hope Mark's wife can help out with your OT questions. Thanks so much for the information!!

raegan
01-23-2011, 09:29 PM
yes, he enjoys breakdancing in general. (we have some friends who have done this particular program for years & he's tried to teach himself to do it for a couple years.) it's a beginner class, and he wants to go back despite being frustrated to near-tears when they were taught a new move the 2nd week. Immediately after getting in the car, he asked when he could see his OT again. He WANTS to do it. I'm certainly not making him. Same for reading. It's not MY goal; I don't care if he learns to read in the next year or two, but HE wants to do it. And he's showing all of the signs of being developmentally ready for it, which is great. I don't think my learning to read on my own *caused* the dyslexia, but that I only learned one way, and that way was very very slow. Not a problem when you're reading 3 grade levels above your peers in elementary school and everyone reads out loud, but I will admit to my reading tedium being one of the reasons I chose not to go to law school after graduating college. I have looked at several reading programs, and for his particular visual nature, Funnix seems to be the most useful. I think if I'd had a program that essentially trained my brain to see words instead of hearing them, I could read without feeling slow today. (And I don't want to stress my reading issues; I just mentioned at a party that I don't read for pleasure because reading is slow torture for me...we got to talking, and one of the moms at the party is an expert in learning disabilities--some sort of children's advocate, not sure exactly--yadda yadda. I've set a goal to read one novel a month, and so far, I'm exceeding that goal by about 6 chapters into book 2, lol. So I CAN read, and read at a very high level, but just really s-l-o-w-l-y compared with others who read at that level.) That's not his issue. It's mine. But since he has stated he wants to learn to read, I want to find a way that will work for him now and helps to serve his future, as well. The research indicates Funnix fits that bill.

I'm also in the "better late than early" camp, but I'm also not going to tell him he shouldn't have the goals he's set, either. They are realistic goals...IF his body and brain are playing nice. ;)

And I guess I'm lucky--he can generally switch gears pretty easily when he's in sync (working with OT regularly). Not that many SPD kids have that ability, apparently.

raegan
01-23-2011, 09:38 PM
Kristina, your poor big little boy! (my older was/is big for his age, too--interesting) I'd definitely get an evaluation...what will it hurt? ((Hugs)) I hope your dh can see your son's behavior is not healthy, and getting a dx is not affixing a permanent label, but a path to coping.

I've noticed that if a parent is resistant, the following situation has always been the case: child in question is a boy; hesitant parent is the dad. I wonder if there's something to that...?

MarkInMD
01-23-2011, 11:41 PM
I will admit to having been a hesitant dad with Hurricane and coming around to his likely Asperger's, but not in the sense that I couldn't believe it was true. Without the knowledge that DW has in her role as an OT, I didn't know nearly as much as she did about autism spectrum diagnoses. I was concerned that maybe she was so accustomed to working with kids on the spectrum that she was projecting that onto our son. However, the more I learned about Asperger's, the more I realized it fits. In my case, at least, I needed the logic to be there in my own head before I could buy into it. Men are naturally resistant to these things, but caution isn't always a bad thing. Sometimes it saves a family from a downward spiral. Outright not listening to reason, though -- that's not good.

MrsLOLcat
01-24-2011, 12:04 AM
Am I deluding myself that it will *ever* NOT be a struggle to do schoolwork? Or is there at least some seed of truth to my hope that his new OT therapy might calm the waters enough to wade into more formalized learning?

Don't worry! He'll get there, especially with an OT. We've never had that because our insurance... UGH. My DS is hyposensitive to touch. He can't just 'touch' something; it gets knocked over, pushed over, or otherwise destroyed because he doesn't realize how hard he's doing whatever it is. He used to rearrange the furniture in his room just to feel *something.* If you touch him lightly, either he won't notice or he'll jump out of his skin. Going to the grocery store is a *nightmare* because he wants to rub up against all the shelves... in every aisle!! (Imagine this with an 85-lb. almost-5-foot-tall kid, and you've got the idea.) I used to think that he'd never be able to write because he drilled through every piece of paper I gave him. He hated chalkboards. He hated whiteboards. Huge pieces of chalk to write on the sidewalk finally was the answer. After a lot of work and a couple years, though, he's able to write on regular paper with a mechanical pencil and NOT break the lead every single time (though we still go through a lot of it compared to DD, who has amazing fine motor skills and gets mad because her kindergarten teacher won't let her use college-ruled paper :o). Just one anecdote in a ton of sensory fun we've had in his life, but it can be done! :)


Oh, another great resource is http://www.out-of-sync-child.com/ . The Out of Sync Child (http://www.amazon.com/Out-Sync-Child-Recognizing-Processing/dp/0399531653) and The Out of Sync Child Has Fun (http://www.amazon.com/gp/product/0399532714/ref=pd_lpo_k2_dp_sr_1?pf_rd_p=486539851&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=0399531653&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=04ZQNR5EZBG8RV6S2RAS) are fantastic. I returned my copies to a friend thinking I'd pick my own up at Half Price Books, but darnit if those haven't shown up at my HPB store! D'oh!

Of course they haven't! They're SPD parent bibles! :D


Men are naturally resistant to these things, but caution isn't always a bad thing. Sometimes it saves a family from a downward spiral. Outright not listening to reason, though -- that's not good.

Too true. DH has to talk me down out of random trees every few months when I get my WorryWart on. He's a good balance for me.

raegan
01-24-2011, 03:24 AM
Sarah, thank you so much for commiserating with me! I've referred to my son as "The Destructobot" more than a few times because of what you describe. And have you ever had the distinctly enlightening experience of taking your DS to an old fashioned ice cream shop/soda fountain with stainless steel counters and walls? I certainly understand the desire to feel how smooth and cool it is, but...yeah. anyway. thank you again.

dbmamaz
01-24-2011, 09:47 AM
Well, guess I called that one wrong, huh. I admit i get nervous, too, becuase the more I read about my son's various alphabet soup dx's, the more I saw of it in me. So i go back and forth between - its ok that I see his issues as 'normal', because I can help him learn to cope with the outside world while working with his issues . . . and wondering if I should have done more. Of course, when my son first got dx'd, his step-father decided to leave me . . . so I spent that year shuffling between specailist apts, school IEp meetings, and marriage counseling sessions while working full time, and spent 6 mo of it as a single parent . . . plus he was already 9 when he met an OT for the first time, and they seemed to have no idea what to do for him. at school, they just let him type rather than worrying about his handwriting (i'd gotten him a typing tutor), they put him in specail ed gym simply because he needed more supervision (he got in trouble all the time in gym class). Oh well, there are many paths . . .

MrsLOLcat
01-24-2011, 09:24 PM
Sarah, thank you so much for commiserating with me! I've referred to my son as "The Destructobot" more than a few times because of what you describe. And have you ever had the distinctly enlightening experience of taking your DS to an old fashioned ice cream shop/soda fountain with stainless steel counters and walls? I certainly understand the desire to feel how smooth and cool it is, but...yeah. anyway. thank you again.

I haven't... but I can imagine! Fingerprints everywhere... O_o

dbmamaz
01-24-2011, 09:39 PM
I was imagining licking . . . my middle one used to lick everything . . .

InstinctiveMom
01-24-2011, 09:48 PM
Mine is a noise-maker. Specifically, a loud, repetitive noise-maker. I don't know if it's a defense mechanism to drown out the other noises that he is constantly bombarded with or what, but it's near constant. We used to send him to school with a weighted vest and noise-cancelling earphones.
He's also ADHD - I resisted that dx for a long time, and still do kinda because since we're homeschooling, neither of those things get in his way when it comes to school. I know how he learns and what he needs and so set up the environment to meet him where he is.
~h

MarkInMD
01-24-2011, 10:24 PM
In addition to being a slam-into-everyone kid, Tornado is a screecher when he's either really happy or really angry. Make your eardrums bleed loud.

raegan
01-25-2011, 05:39 PM
We started the Interactive Metronome therapy today. I am a little irritated that the OT didn't do an actual assessment first; we jumped into the "training" mode (but maybe that's necessary before the assessment anyway??). But it was certainly obvious that he's got a good deal of work ahead of him. And my fears that the new OT wouldn't be as fun as his usual one were valid, unfortunately. Hopefully he'll warm up to her. Also--my bargaining chip is being removed from the building entirely--a padded ball pit. WTF?! What are they thinking?! That's the greatest reward/incentive for kids with his mix of issues (save water/pool play). :(

Anyhoo.

YES to the noises--he can't stand high frequency sounds (his only hypersensitivity on the radar), yet makes this ear-splitting screech when he's running off to do another activity. I imagine it may have begun as an imitation of tires squealing, but no longer resembles it so much. UGH. drives me batty.

WRT the stainless walls and counter at Braum's, he splayed his body up against it--from face to knees--as he walked along, back and forth, until I could get him to stop and eat the damned ice cream already. I think he wanted to lick it, but we had been having conversations all that summer about stopping the licking when we're in public places because who knows what germs are on them. (nevermind it makes Mommy gag...) Incidentally, that was the straw for a friend of mine whose son in question now has a PDD-NOS dx: he was licking windows everywhere they went. everywhere. ;)

Dutchbabiesx2
01-25-2011, 06:29 PM
Raegan,
hey- thanks for the mention of Sensory Flow-that is my site.
I have an 8 year old who struggled in PS until he ended up with PTSD and totally flipped out, it is not a good idea to pick up a freaked out kid! The good thing about HS is that the demands on SPD is what you make it for them. yes you feel the need to actually 'teach' them . . . believe me!
Another good book I suggest if you are learning more about Auditory Processing- The Sound of Hope by Lois Kam Heymann, I wrote about it here (http://www.sensoryflow.com/2010/10/reading-listening-singing-and-a-little-dancing/).
We have also done some vision therapy for memory issues, but I am finding more real world applications both stimulate his mind and allow him to tolerate the 'learning' process. Many kids with auditory development issues also have spatial awareness, visualization problem, so I do a lot of redecorating bedrooms or map reading, I let him measure and draw it out (he has terrible handwriting and hates to write). This works several things.
I am still learning, and swaying in and out of the SPD label for my kid, he has some new Tourettes type symptoms . . . high anxiety, low self esteem issues . . would sit and watch the science channel or history channel all day if I let him!
we too are in a colder climate and getting them out the door is difficult. I'm always thinking the SPD diagnoises is only part of the picture, the therapy does not address the self esteem, mental health aspect of their mental torments they deal with!

I've learned the best thing is to trust your instincts and know that deep love and compassion go a lot further that any workbook.

I also read a lot from Heather Forbes, though her subjects are for traumatized children, and while my child fits it now (thanks PS for leaving a lasting impression!), I could have learned a lot more about compassionate parenting if I had read her stuff when he was 2! No Love and Logic, no Pocket Parenting . . . .oh well, mental health therapy is our new black ;)

good luck!

raegan
01-30-2011, 01:35 PM
I've thought about it a lot more, and it seems that a lot of childhood games and activities reinforce those same rhythmic patterns/behaviors--jumping rope (esp double dutch!), yo-yo-ing, clapping and rhymping games, etc. Those are the games and activities--in addition to hanging upside down on the monkey bars--that I LOVED as a kid. I have a lot of the same sensory issues as my son, but mine are totally mild and don't really get in the way of enjoying activities I'd like to do unless you count doing the dance games on my friend's Kinect! (Aerobics type classes are near-impossible for me, but I don't think I'd like to do them in the first place, lol.) So I wonder if all of those jump-rope contests and skipping and clapping rhymes and hopscotch, etc, helped with my attentiveness in elementary school. IIRC, the year we had library time after recess, I read through every earth, climate, and space science book in our elementary library at least twice. Hm...

(and how sad that many kids are missing out on those "wasted" minutes of recess just so they can learn to fill in test bubbles instead!)

Miguels mommy
02-08-2011, 12:57 AM
In addition to being a slam-into-everyone kid, Tornado is a screecher when he's either really happy or really angry. Make your eardrums bleed loud.

My son screeches and claps hard closed fist when happy or mad.

Part of learning RX was metronome training.