Anyone not getting SID diagnosed? - Mothering Forums

 
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#1 of 27 Old 08-13-2007, 12:39 PM - Thread Starter
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I suspect that my 3 year old has SID. I would bet money on it. But I am feeling really torn about getting his evaluated/diagnosed. Would anyone mind sharing their stories about deciding whether or not to go that route? If you decided NOT to, what kinds of things have helped you parent a child with SID?
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#2 of 27 Old 08-13-2007, 12:48 PM
 
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We got a diagnosis because we NEEDED help. We had no idea what to do or where to start with ds. However, he was very young (13mos.), and a large part of his problem was feeding, and he was VERY sensory defensive to the point that it interfered with the functioning of daily life.

If you're coping well and your child is coping well, and you feel you are handling things fine on your own, well then....you don't need a dx. It's when you feel you need help, you need therapies for your child, you don't know how to proceed or what to do, that a dx is helpful because it opens the door to all kinds of help.
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#3 of 27 Old 08-13-2007, 01:00 PM
 
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We didn't get help for a long time, and now we've started and I'm beginning to regret we didn't start earlier. Most of DS's issues were not too bad - except eating - and I kept assuming he'd move beyond the eating on his own eventually or through treating yeast or whatnot. Well, turns out his sensory issues are getting more pronounced as he's growing older. He's getting less regulated rather than more. I'm sure his OT will help now, but I wonder if we could have sidetracked all the things we're dealing with now by getting him more intensive OT earlier. Just be careful if you decide to not get the help, I guess I'm saying. Sensory issues change and move around over time, and you may suddenly find yourself in a more difficult situation than you thought. That's what happened to me.
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#4 of 27 Old 08-13-2007, 01:17 PM
 
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I know that dd1 is ASC, which of course includes SPD/SID, and we have chosen not to have her evaluated/diagnosed. Our reasons are:
1) my personal experience with interventions and "help" doing more harm than good, and my intense suspicion with most of the medical and educational industries,
2) my personal experience, as well as that of other ASC adults, of discrimination in adult life from carrying the ASC label,
3) the fact that she is and will be homeschooled, enabling us to meet her needs in the home and eliminating the issue of needing accommodations or services from the school, and
4) the fact that her traits and abilities are close enough to the normal range that she can function in her daily life as much as she needs to.

If any of these factors were different, we might have chosen to pursue diagnosis or treatments. This is a personal decision that must be made for each child in each individual situation. I am guessing that a SPD label would not carry the same stigma that an LD label would, so that might be less of a concern, but in general, if you are questioning it, I would advise not pursuing diagnosis, because it can always be done later, but it is very difficult to have undone.

How to parent a SPD child--it depends on the child's specific issues. Is he sensitive to noise, textures, what?
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#5 of 27 Old 08-13-2007, 01:46 PM - Thread Starter
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He is a sensory seeker, I believe. He hates when things brush up against him, he prefers more rough motions, hates clothes, unless they are heavy and tight, won't wear shoes, ever. (We haven't found any he will wear. Crocs are OK sometimes, but not lately) He likes to yell, spin, jump, run, throw, push, etc, to the point of being almost dangerous for himself and people around him. Yet he never gets hurt. He walks on his tiptoes, doesn't like his hair to get wet, can't sit still, VERY picky eater (but he eats a LOT, thank goodness, as long as its one of the few foods he enjoys). He was a VERY late talker. At the time, I didn't think anything of it, but now I'm seeing that as another piece to this puzzle. He didn't say a single word, not even mama or dada until he was over 2. He is 3 now and speaks OK, I think.

We are doing ok as of now, as a family. We are planning on homeschooling also, so we don't really need a diagnoses as far as school stuff goes. What kind of things would a child with SID DO for therapy? Like an OT? He is a little much for me sometimes, but I also have a 1 year old and I'm pregnant, so I know not all of it is him. I know my patience and tolerance isn't at its peak lately.

I too worry about having a label that won't ever go away. I also worry that this will get harder and "worse" and as he gets older, and I have been told SID is harder to diagnose in older children?
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#6 of 27 Old 08-13-2007, 01:57 PM
 
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Well, with all due respect to Brigianna, who obviously has had a different experience growing up with a label, I don't see a label as a bad thing. A label is a word. It means your child can get services and therapies that (for us) have made a world of (positive) difference. We were drowning before ds got diagnosed and got help. A label has been a very positive thing for us. A label does not change who your child is. It opens up doors to services that your child cannot get without it, though, and to us, that has been instrumental in helping make our situation better.
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#7 of 27 Old 08-13-2007, 02:00 PM - Thread Starter
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Originally Posted by Finch View Post
Well, with all due respect to Brigianna, who obviously has had a different experience growing up with a label, I don't see a label as a bad thing. A label is a word. It means your child can get services and therapies that (for us) have made a world of (positive) difference. We were drowning before ds got diagnosed and got help. A label has been a very positive thing for us. A label does not change who your child is. It opens up doors to services that your child cannot get without it, though, and to us, that has been instrumental in helping make our situation better.
I guess another question I have is WHAT kinds of doors does it open? I am so new to this.
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#8 of 27 Old 08-13-2007, 02:06 PM
 
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Well, okay, for example....our insurance doesn't cover autism treatments. ANY of them. As in zero. They won't even cover speech therapy unless it's for speech RECOVERY, as in if ds had a stroke or traumatic brain injury and lost his ability to speak, it would be covered. The fact that he has autism and is severely speech delayed means nothing to insurance. However, because he has an additional diagnosis of a sensory based feeding disorder, which falls under the SID umbrella, our insurance will cover OT, feeding therapy, and speech therapy. That's just the private side of things. On the public side of things, for example, because he has a diagnosis, he gets an IEP, which basically means he gets specialized treatment at school and special exceptions made for him because of his "label." SID kids can get things like in school OT, specialized equipment to use, be excused from certain aspects of the dress code if their clothes bother them. In my state, even if you home school, if your child has a diagnosis, they are entitled to publicly funded therapies like OT and speech twice a week, and they DON'T have to attend school to get it.

Stuff like that.
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#9 of 27 Old 08-13-2007, 02:13 PM
 
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Yk, I tend to weigh in closer to Briggiana in that I avoided a label for a long time. I don't like our culture's dependency on them, nor do I like that we can't see differences and just let them be a part of diversity - we have to come up with a way to make them "other." And I think we do this mostly by giving labels. We finally gave in for a number of reasons, but I still feel at odds about it.

Finch, I think you live in a part of the country where it is probably very different to have that label. You're surrounded by lots of other parents with kids with ASC. People probably stigmatize a lot less there because the evidence of the diversity even inside the label is right before their eyes. I would imagine it would be a whole different thing in a place like that! It's so different "out here." If and when I tell people my kid's on the spectrum, you should see the things their faces do or the things they say to try to make themselves feel more comfortable. It sucks out here in NT land!

Anyway, I'm hard pressed to let many therapies into DS's life because my experience has been that most of them are dolts. Sad but true. The OT we found is really wonderful. She gets that my kid is just a kid who has some real issues that need help. She gets that we all have sensory issues on various places on the continuum. OT is mostly lots of play, and in the midst of the play there is slight entrance into his discomfort zone. She never ever pushes too hard though, to the point of getting him really upset. She makes it as fun as possible, is goofy with him, and pulls back when she can tell he's feeling too anxious. As a result, he asks to see her and is always excited when we get there. This is what to look for in an OT. And respect your child's feelings about him/her. Too many therapists out there are not great at what they do and upset the kids by pushing too much. This would make me grab DS and run fast the other way (and has).
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#10 of 27 Old 08-13-2007, 02:17 PM
 
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I"m off to teach, but will check back in tonight and post why we sought a diagnosis at age 5, even though ds' symptoms are pretty mild.

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#11 of 27 Old 08-13-2007, 02:20 PM
 
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Yeah, Kerry is right, I do sort of live in autism mecca. My city/area is where the TEACCH method started, plus we have 2 large universities here that are very involved with autism research, treatment, and funding, so we have a HUGE autism community here. The 2 universities of course have large teaching hospitals attached, which means lots of medical specialists and specialized pediatric hospitals, so we have a HUGE special needs population here in general, as there are specialists here that aren't in other areas of the country. Another factor is we are a tech/computer/research hub, so there are lots and lots and lots of science/engineering types here, which (if you believe the genetic hypothesis of autism as I do) means more autistic people in the population, both adults and children.

So yes, I do live in an area of the country where it's a LOOOOOOOOOOOOOT easier to get services and the label is a "good" thing, so my experience and perspective is colored by that.
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#12 of 27 Old 08-13-2007, 02:24 PM
 
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Just so you know though you don't need a dx for school until they are 6.

We have a dx of autism but right now it is for our personal information, we have not submitted it to school, the state (he gets state services) other dr's etc. Not really even sure why, that is just the route we choose to go. But we have been getting therapies for him since he was 1 1/2 so for us I feel like we have been getting everything we need even without a dx. And I feel my son did need the help because we all needed to know how to help him better with his sensory issues (OT) and speech and communication.

So it is a personal decision and sometimes can be a financial decision. For us it didn't matter financially since the state pays for all his services until he is 6 without a dx.

Hope that helps some.
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#13 of 27 Old 08-13-2007, 02:59 PM
 
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All 4 of my kids would qualify for an SPD/SID diagnosis. The 2 that are ASD I did seek diagnosis for them and Ot services. Due to their other issues they would be more likely to be able to obtain services in our area so it was helpful.

My 4th I had diagnosed (he has significant sensory issues) as well privately but it did no good in getting us services for OT either through school or insurance in our area. I already do everything at home that we would have done anyway. I don't use his SID diagnosis anymore and as far as anyone is concerned he does not have a diagnosis although he has had a few. We are able to use our knowledge to help him out at home and through just parenting in a way that works for him. If he gets to a point where he needs a diagnosis then I will seek it again but it really did us no good what so ever.

My 3rd child's sensory needs are not as glaring as her siblings but still definitely there. I have never had it diagnosed because I already have the knowledge of how to help at home and she would also not get supports through school, there for I feel for her it is useless to get a diagnosis of that at this time. We do address it as we do with the other kids, just not through therapists and such.
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#14 of 27 Old 08-13-2007, 03:02 PM
 
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Like finch, we got ds diagnosed because I wanted to see if OT would help us. And I really need the support.
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#15 of 27 Old 08-13-2007, 03:04 PM - Thread Starter
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I guess maybe I should start a new thread? I'm wondering what they *do* in OT? I mean, what can ANYONE do to help a child not run in circles and like clothing?
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#16 of 27 Old 08-13-2007, 03:45 PM
 
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Originally Posted by starry_mama View Post
I guess maybe I should start a new thread? I'm wondering what they *do* in OT? I mean, what can ANYONE do to help a child not run in circles and like clothing?
swinging and brushing, my friend. It's all about the swinging and brushing.
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#17 of 27 Old 08-13-2007, 04:00 PM
 
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I guess maybe I should start a new thread? I'm wondering what they *do* in OT? I mean, what can ANYONE do to help a child not run in circles and like clothing?
our OT wants to do group therapy and exposure to public areas with ds as well as brushing, swinging etc. exposing them to lots of textures is also a part of it.
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#18 of 27 Old 08-13-2007, 08:22 PM
 
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Your son sounds very much like ours. We haven't sought any diagnoses. We homeschool/unschool. Our son is sensory seeking also.

It helps if I connect with him first thing in the morning and create some type of body compression. We have a few sensory games that we have created:

"choo-choo train" is when he lies on the bed and I "row" his feet like a bicycle and we chuga-chuga-choo-choo (he does the train whistle sound) and we repeat that over and over for about 5 minutes. The engagement, physical motion and my participatory resistance/driving of his legs back and forth provides a lot of sensory input in a non-impact way.

Another is "pillow mash"-again he lies on the bed and I place a pillow on top of his chest and firmly "aggitate" the pillow in a jiggling motion and say "pillow mash, pillow mash", repeatedly. This provides input to his chest.

And another one is "salt shaker", again he lies on the bed, and I hold both legs up and "shake salt" out of him. He is sorta upside down (legs up in the air, body on the bed), which gives input of vibrating his head and back on the firm mattress.

Another is "burrito"-where he is wrapped tightly in a blanket and rolled side to side repeatedly.

Another is "sack of potatoes" when he climbs in a pillow case and I lift him up and down from the floor.

We also do "row-row-row-your boat" where we both lie on the trampoline with full body contact and roll across the surface back and forth, singing row-row-row-your boat. The total body compression is very calming for him.

We have his bed mattress and box springs on the floor. So, he'll go up to his room and bounce and jump for sensory input too.

Oh, also he loves to stand in place and jump up to reach my hands above his head. This is helpful when waiting in line, where he is restless, but needs contained activity. It creates jumping, reaching and a goal/game aspect.

Another is where I hold my hands together palm to palm and move them up and down and he tries to clap them with his hands. Again, this is great for when out and about and he has too much energy for the space limitations. A variant of this is where he tries to "give five" while I pull my hands back quickly. These can be used to constructively engage other people in the "game" also, which might free you up for short periods.

He also loves to play in the sink with LOTS of soap, that seems to be very soothing to him (but messy). Some kids really seek multiple baths a day and having that planned before and/or mid-visit may allow a connecting time with you; and a recentering activity, enough to make it a longer night.

So, if we are going to have a lot of sensory stimuli like a cacophony of sounds from a crowded party, we proactively do these games for 15 minutes several times throughout the day. It helps if we are very careful to avoid dairy, HFCS and artificial colors which decrease his ability to hear and consider other's needs. We try to plan activities for earlier in the day, plan some outside play time, especially swinging. Big tight, long hugs help in the midst of chaos to recenter. We also freely use Rescue Remedy (and/or Cherry Plum) Bach flower remedies before (and during) high stress situations.

Any frenetic rushing by me, amps ds up; and his sensory needs increase due to the decreased connection with me, as much as anything.

I ran across this other comprehensive list of ideas for sensory activities:http://www.coping.org/intervention/s...nsintegact.htm

It probably helps to practice some of these games so that they are fun, known and can be anticipated. Perhaps, make a list, or place a name of each game on a piece of paper and have him choose one from a jar to play with you or others.

Hope that helps!

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#19 of 27 Old 08-13-2007, 08:23 PM
 
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Sensory Activities
Here is a another list of various sensory activities that children may enjoy and benefit from. I am copying this from ShineWithUnschooling. I find that proactively offering and engaging our son with some of these sensory inputs really helps when we have/had a busy day. If we have too much unfamiliar stimuli, he needs a break to recenter with some of these soothing activities. Or else......meltdown!

==========
CALMING ACTIVITIES:
Experiences that may help to relax the nervous system

* Stretches
* Deep pressure massage
* Slow rocking or swinging
* Fidget toys
* Progressive muscle relaxation
* Quite music with a steady beat
* Bear hugs
* Reduced noise and light levels
* Lavender, vanilla or other soothing smells
* Snuggling in a sleeping bag, large pillows or bean bag chair


>>>


ORGANIZING ACTIVITIES:
Experiences that can help an individual become focused and attentive

*Sucking or chewing on hard candy or gum
* Adding rhythm to the activity
* Vibration-toy massager, vibrating pillow, wiggle pen
* 'Heavy work' tasks to include hanging, pushing, pulling or carrying heavy objects

Similarly:

To organize
*Swinging on a swing or climbing
* Rhythmical sustained movement: marching, washing a table, or bouncing
* Rocking in a rocking chair
* "Squeezie" toys (koosh balls, balloons or rubber gloves filled with flour or cream, soft balls, gak, silly putty)
* Hanging by the arms on the monkey bars (20-30 seconds)
* Pushing/carrying heavy objects
* Carrying back packs weighted with books or bags of dried beans (this should only be worn for 15-20 minutes with an hour or two between)
*A reading corner with a bean bag chair makes a wonderful place for escape when there is too much stimulation. Some children may like the bean bag on top of them.
* Play dough
* Tactile Bins (cornmeal, oatmeal, water, sand, rice, beans)
** A bin full of bird seed (brought outside) is merrily cleaned up by the birdies -- no mess! :')
* Kitchen time (mixing, tasting, smelling, washing up)
* Finger painting


Some children also need extra sensory input in their mouths and hands in order to organize their behavior:

* Drinking from a water bottle
* Chewing (you can use a straw, rubber tubing or coffee stir stick)


>>>


* Being brushed with a corn de-silking brush (in one direction approximately 10 times with pressure brush their arms, back (but not over the spine), legs (on the top, outer parts and underneath, avoid the inner thigh area), top of the feet and the hands)
* Sucking on hard candy, frozen fruit bar, or spoonful of peanut butter or marshmallow fluff
* Licorice tug-of-war, blow pin wheels or various types of blow toys, bubbles and whistles
* Pushing against walls with the hands, shoulders, back, buttocks and head
* Cuddling or back rubbing
* Taking a bath
* Being rolled tightly like a hot dog in a blanket
* Being squished under a therapy ball, mat or couch cushion
* Tug-of-war
* Wheelbarrow walking, jumping games like hop scotch
* Crashing games-run and dive into boxes, bean bags and couch cushions
* Pulling a wagon, carrying a heavy book bag, digging in the yard or carrying groceries
* Sports such as wrestling and football
* Deep pressure (giving a massage) and joint compressions (holding above one joint and under one joint then doing a quick 10 repetitions of compressions, pushing and pulling)
* A mini trampoline
* A sockem bopper or whatever they call those weighted kid-sized things that spring back up after you knock them down

Oh, and going outside to blow bubbles is my cure-all. I always have bubbles in the car for "emergencies" too.

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#20 of 27 Old 08-13-2007, 08:58 PM - Thread Starter
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WuWei!

I think our sons sound a LOT a like. Every activity you described, my son would LOVE. Thank you so much for writing them all out. I think one of the reasons we considered getting him evaluated was to get some advice from a "pro" for things like what you described. Maybe I should shift my focus to asking other mamas what THEY do.

Just reading about SID has been so helpful to me. Does that make sense? Knowing that this isn't a "behavior problem" which is how it appears, that I didn't do anything wrong, that I'm not a crappy parent, etc.

I really appreciate everyone's advice and for sharing your stories with me. I will probably be in and out of this forum, I hope you all don't mind!
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#21 of 27 Old 08-15-2007, 04:37 AM
 
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Ok, it only took me two days to get back to this thread.

We had ds assessed (privately) just as he turned age 5. I didn't do it to seek a label, I did it to seek help for our ds. There are experts out there who can help, I wanted to avail myself of them. I did it privately because his issues were not enough to qualify for any sort of special ed, and it's not something that I'm expected accommodations for when he enters public school next year (he was in private kindergarten this year).

I did it because
(a) I know that my dh has these sensory issues, and while he's learned to accommodate them as a adult, I firmly believe that a young brain can be rewired so that the brain isn't reacting as if everything were a threat (our ds' issue)
(b) My brother had unspecified learning 'issues' in school to do with organization and ability to process information. Upon reading up on SID, I've come to see those issues as very likely due to SID, and I was seeing many of the same tendencies in our son. My brother grew up thinking he wasn't smart, when in reality, I think he he had trouble filtering all the sensory stuff going on.
(c) ds was starting to show some anxiety over certain things were interfering with daily life.

I suspect that if we did a strong home diet like Pat described in her last two posts, we might see many of the the same effects. We DO do home things, I try to include as many sensory things as possible in our days. The issues I have with being totally home based are 3:
1. Our son does not 'perform' for me. I can't push him out of his comfort zone. Or more accurately, I don't want to do that, because I think it would be detrimental to our relationship. An outsider is able to get things from him that we can't. Our OT never pushes him beyond his abilities, but with her, he's able to try things that he would never do with me.
2. I wanted direct feedback from an experienced person on what kinds of things would be most helpful for him.
3. There are certain things that we've accessed through OT that I couldn't do on my own: brushing and listening therapy.

I'll cut and paste here below an older post of mine that explain the results we've seen with OT, plus a link to a post I did earlier this summer on how OT has helped. He's not a different kid - he's still sensitive, he's still easily overstimulated, but he feels more in control, and he's enjoying himself physically in ways that he couldn't before.
https://www.mothering.com/discussions...hlight=sensory

What we've gotten through OT/why we did OT (from this thread):
https://www.mothering.com/discussions...hlight=sensory

OT has been IMMENSELY helpful to our son in ways that are mostly unrelated to school and yet important to a child's life.

He can now tolerate being in shorts/t-shirts. He's even gone so far as to wear sandals. Last year he was in sweatpants and long sleeved shirts in 90 degree weather. That meant he couldn't play outside when it was hot. Without the brushing protocol that we learned in OT, he would not be comfortable switching clothing according to the weather. I can't tell you how much easier just getting dressed in the morning is.

He can ride a trike and a scooter. Last year he could barely ride a trike. He can do the monkey bars on the playground. Last year he couldn't hang from them! All of these were helped by OT for motor planning. He can slide down the fire pole at the playground. He can do somersaults. Due to his vestibular issues, he couldn't do either.

He now chooses to draw and write. The "big" thing in his K class among peers is to color bus schedules. Last year he couldn't control even a marker well enough to be able to do this. Yes, this fine motor control helps with academic stuff like writing too, but before OT he was avoiding ALL art - that form of creative expression was closed to him.

His ability to tolerate noisy environments (such zoos, children's museum) has increased markedly. They're still stressful for him, but he now ENJOYS them. He's also no longer terrified of loud noises. Oh, they still bother him, but he can control his reaction just a bit. Why does this matter? Well, his big obsessions these days are: fire trucks and buses. Before OT he longed to visit a fire station, but was too terrified of the possibility of alarms going off to actually go in the door. He wanted to ride the bus, but the sound of the air brakes going off when they stopped made it impossible for him. We now regularly visit fire stations and ride buses. In fact, the fascination with bus schedules and buses has been largely responsible for him learning to read. We're basically supplementing school with a 'unit' on how bus schedules are made.

OT has also helped with self-regulation, reducing his flight/fight response (ds's was totally flight, other kids have more of a fight reaction). He's better able to interact with people and his world because he's not so 'alert' all the time. He's not using up all his energy just making sure the world isn't going to do something unexpected (from his perspective).

In other words, his SPD, though mild, was interfering with the basic daily experiences a child is able to have. He often COULDN'T learn through experience because his system was too 'alert' for possible 'danger' to take in any information. Or, when he wasn't, he couldn't use his body in ways to help him make sense of the world around him. That's why we did OT.

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#22 of 27 Old 08-15-2007, 11:29 AM
 
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I'm also going to chime in on the side of urging a diagnosis and OT.

There were many behaviors that DD had that I didn't realize were sensory related and it was immensely helpful to me to see that they were not in her control. If she hadn't been in the right kind of OT for her then she would never have made the kind of progress that she did. OT is very specific to each child and I would hesitate to recommend activities unless I knew exactly what types of issues you had. Not that there is anything harmful with any of the OT exercises - they can't hurt. But they might not help.

And a word about labels. My DD has SPD. Nobody, and I mean NOBODY aside from me and DH knows that. There is no stigma. She goes to school and not one of her peers or her teachers has a single clue. Part of that is because I got her help when she was young enough for it to be effective and the other part of it is because I don't share her SPD label with others.

If you are afraid of labels then you have to consider that this is your issue and your fear of it might be detrimental to your child.
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#23 of 27 Old 08-15-2007, 11:59 AM
 
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Chiming in as the mama of a high-functioning Aspie ...

I had no problem seeking a dx. DS had MAJOR sensory and social problems that were affecting his life and the whole dynamic of his classroom at school. I consulted with my two cousins (sisters who are OTs) and the first thing they told me was "Don't be afraid of the label! It's the KEY to getting him help."

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Originally Posted by Finch View Post
We got a diagnosis because we NEEDED help. We had no idea what to do or where to start with ds.
:

I know a lot about ASDs, but I'm still not qualified to treat them. OTs are amazing people who know SO MUCH about treating special needs kids as INDIVIDUALS and developing a plan that is specific to a child's needs.

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He hates when things brush up against him, he prefers more rough motions, hates clothes, unless they are heavy and tight, won't wear shoes, ever.
The Wilbarger brushing technique combined with joint compression is a very effective therapy for sensory disorders (it helped my son enormously with the above issues), but it's imperative that it be taught by a professional therapist. If it's done even a little bit incorrectly, it can really backfire on the child.



Quote:
Originally Posted by Finch
... a dx is helpful because it opens the door to all kinds of help.



Quote:
Originally Posted by starry_mama
What kind of things would a child with SID DO for therapy? Like an OT?
Mine did brushing and joint compression therapy, the How Does Your Engine Run? program, various projects designed to help him work independently and function/focus with busy things going on around him, some physical therapies (being wrapped like a mummy, having a yoga ball rolled over his back), making a "3-step" book for everyday tasks (he still uses this one at school - he uses a laminated 3-line list taped to his desk, and a dry erase marker), things like that.

After just 5-6 months of therapy, he was a very different kid. I will always be grateful that we finally had him dx'd, and only wish we'd done it sooner so he didn't have to suffer through the first year and a half of school.


Quote:
Originally Posted by starry_mama
I too worry about having a label that won't ever go away.
My kid was labeled all the time, BEFORE his dx. It was glaringly obvious that he was different, and had problems coping with the everyday world. Everyone noticed, and commented on him.

Now, people are amazed when I tell them my son is an Aspie. Except for the rare incident here and there (and mostly at home, in private) - one would never know. What was once very obvious is now well managed. He hasn't had OT in over three years, and he's coping beautifully, doing great in school, and his social skills have done almost a complete 180. We still work on some sensory issues here and there, as they arise.

So it's not really a "forever" label.

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I don't see a label as a bad thing. A label is a word. It means your child can get services and therapies that (for us) have made a world of (positive) difference. We were drowning before ds got diagnosed and got help. A label has been a very positive thing for us. A label does not change who your child is. It opens up doors to services that your child cannot get without it, though, and to us, that has been instrumental in helping make our situation better.
A big : to the above!!!!!!


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I mean, what can ANYONE do to help a child not run in circles and like clothing?
LOADS. OTs are highly educated in dealing with these disorders. An OT can develop, implement, and oversee an individual plan tailored to your child's specific needs. You as parents will be an important part of that plan - you'll be included in the loop.

There is no way I could have done this stuff on my own. I am so grateful to my son's awesome OTs.

Every baptized Christian is, or should be, someone with an actual (disturbing) experience, ... a close encounter, with God; someone who, as a result, becomes a disturbing presence to others. - Fr. Anthony J. Gittins, A Presence That Disturbs
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#24 of 27 Old 08-15-2007, 02:22 PM
 
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Oh, and I wanted to add that our OT noticed things that she could work on that I hadn't even noticed were an issue! So, while yes, he was sound defensive and yes, his fine motor skills were well below average (that's why I took him in). But, where he was really delayed was in bilateral coordination and motor planning. I hadn't even noticed that -- but it turns out that working on those issues has helped his sound defensiveness and his overall comfort in the world. He couldn't stand on one foot. He couldn't figure out how to climb.

Just one more anecdote: We signed him up for soccer class this summer because he said he wanted to do it. (His nose was a bit out of joint because his sister had been doing tumbling. We'd quit signing him up for stuff because he simply couldn't function in a class setting. The last time we tried soccer at age 3, he'd FREEZE every time anyone came within 3 feet of him, and then want to go off the floor. He was having no fun, so we quit.)

The soccer class turns out to be held in a large, divided gym. On the other side of the curtain that divides the gym is a large group of summer camp kids (older elementary-middle school age) playing dodge ball. Before OT, ds would have lasted about 5 minutes in that setting. They are LOUD. Not only is he able to stand the noise, but he's able to attend to what the teacher is saying. Before OT and listening therapy, he would have been so overloaded, so afraid of the loud noises coming from the other kids that the teacher's voice would have been background noise. He's now able to filter that out and is enjoying himself. He is exhausted after class, so I can tell it's taking a lot of energy for him to hold it together, but he's having fun in a situation that would have sent him over the edge a year ago. What more can I say?

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#25 of 27 Old 08-15-2007, 03:27 PM
 
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Quote:
Originally Posted by LynnS6 View Post
Before OT, ds would have lasted about 5 minutes in that setting. They are LOUD. Not only is he able to stand the noise, but he's able to attend to what the teacher is saying. Before OT and listening therapy, he would have been so overloaded, so afraid of the loud noises coming from the other kids that the teacher's voice would have been background noise. He's now able to filter that out and is enjoying himself. He is exhausted after class, so I can tell it's taking a lot of energy for him to hold it together, but he's having fun in a situation that would have sent him over the edge a year ago. What more can I say?
I could have written the SAME thing about my own son.

Every baptized Christian is, or should be, someone with an actual (disturbing) experience, ... a close encounter, with God; someone who, as a result, becomes a disturbing presence to others. - Fr. Anthony J. Gittins, A Presence That Disturbs
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#26 of 27 Old 08-15-2007, 06:39 PM
 
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Lynn, your post makes me so excited about what's to come now that DS is in OT!
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#27 of 27 Old 08-15-2007, 06:55 PM
 
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To me the bottom line is that it should be a basic human right that all people feel as comfortable in their own skin as they possibly can. I grew up with undiagnosed and untreated sensory problems. Sure, I found ways to adapt and handle it but it wasn't ideal.

Our child is 11 and very, very happy that we sought out help when he was young. It has helped him have a happier and fuller life than he would have otherwise. He enjoyed therapy and carries no negative baggage or sense of self about it (different than I felt as a kid who just knew something was wrong but wasn't given a way to address it). We did a TON of therapy at home, but what I found was that was a lot more effective when we were doing so based on the advice of professionals.

Last thing, folks put a lot of weight on the idea of "getting a diagnosis". I would keep in mind that getting and evaluation and therapy doesn't mean you are saying something negative about your child. You don't have to start dropping the diagnosis into everyday conversation or wearing a tshirt saying my kid has x,y, and z problem. For me getting help is like getting a child lessons. If my kid wanted to be able to play the violin and couldn't, I wouldn't consider that shameful or think if we acknowledged it that it would destroy the child's spirit. I'd think that if I'm not able to teach them violin and I'm able to get them a teacher I'm glad that I could. To me this is the same. It is about helping hook your child up with teachers who can help the child work on goals they have for themselves.
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