Need advice on SID/SPD, please

[SilverFirefly]

I would love to hear from others who have a child with sensory issues, especially if you can speak to the sensory seeking and academically ahead combination.

 

My DS was recently (not) diagnosed with SID/SPD (apparently it does not exist as a diagnosis). He is also being evaluated for ADHD or/or other challenges (the ADHD evaluation is actually how we were referred for a sensory evaluation). I don’t know what the official diagnosis will end up being, but the OT thinks that sensory issues of the sensory seeking variety are at least part of the picture.

 

My DS is also academically ahead. He is currently in K3 according to PS requirements but is doing work that is closer to K level (we are working on reading CVC words, writing letters and numbers, counting to 100, basic addition, etc.). He has not been IQ tested or anything, but his providers both identified him as very intelligent.

 

Can anyone speak to how this type of child does in PS? I would like to continue HSing even after DS is PS eligible, but DS’s father is resistant to the idea. I am particularly concerned since DS seems likely to be both gifted and challenged.

 

The Out-of-Sync Child was recommended to me by one of his providers so I do plan to read that.

 

Any recommendations on how to help this type of child (both academically and generally)? Sorry, I know that’s really vague, but I’m totally new to SN….

 

Thanks

[wapiti]

Another book about SPD that I liked is Miller's Sensational Kids.

 

The term you're looking for is twice-exceptional ("2E"). Often, these kids are the hardest to "fit" in PS because they tend to fall through the cracks, qualifying neither for special ed services nor for G&T services. What the right choice (HS or PS) will be for your child will depend on a lot of factors, starting with your child's strengths and weaknesses, as well as what's available at the school in question.

 

Alternatively, you may want to look into Dobrowski's overexcitabilities ("OEs"). Another book would be Webb's Misdiagnosis and Dual Diagnosis of Gifted Children and Adults. There are many other books, but that depends on the specifics of your child's situation.

[prairiewindmomma]

Wapiti is giving you great recommendations.

 

I would recommend getting official diagnoses and then going after an IEP or 504 plan that works a lot of sensory breaks and accommodations into his day. Depending on what his behaviors are, you will need the protection and accommodation. ;)

[....]

Hi, I have two kids with SPD. One scored in the gifted range by testing thru our school district. The other one has not been tested, but I'm sure she would score in the gifted range.

 

I can tell you about our experience and what my opinion is (from what I've been thru)...

 

My oldest daughter went to ps for K and 1st grade. It was not a good experience. Unless something happens to me, my kids will never go back to ps.

 

I tried to get help for my daughters many times. There is just no help out there for them. Our pediatrician is not very supportive. The school district didn't really have any special services for them. I was told at the doctor's office that there are so many children on the spectrum, that therapy should be reserved for children who can not function in daily life. The doctor said that my girls' needs are being met so well at home that they wouldn't benefit much more from therapy.

 

I did have a long talk with a public teacher from our school district who worked with my daughter. She knew more about this topic than any doctor I talked to or book I read.

 

OK, so about my kids...the quirky sensory things are actually disappearing in my oldest daughter's behavior. She also used to growl at people, she would sway, etc. She had some really strange behaviors. They have all disappeared. She does really well on her schoolwork, too. She says that she loves homeschooling.

 

My other daughter (who would be in 1st grade) has alot of problems right now. We've had several people ask if she has Asperger's. She also has some quirky behaviors. She'll rock back and forth when she's doing schoolwork. Lately, she won't wear a shirt. She spent the entire winter terrified of being infected with Anthrax. She washed her hands so many times that we had to coat the tops of her hands with Vaseline. She also has a thing now where she won't go to bed. She is staying awake until about 10pm, talking. She will not stop talking. We just started putting her in our bed at night, because she is annoying the 4 yro.

 

OK, so you asked about homeschooling... My oldest is very advanced academically, but she likes to be in control of her schoolwork. She will follow a syllabus, I ask her opinion before we start curriculum, she's kind of a perfectionist... She likes to work alone.

 

The other one is unschooling this year. She seems to be at the same academic level as the other girls her age (from what I've seen at girl scouts, etc). However, I think she is probably closer to a 3rd grade math level (she should be in 1st grade). I just let her do as much math as she wants.

 

Things that have helped us:

 

1. Martial arts. This sounds dumb, but for some reason, they REALLY like Tae Kwon Do. They are constantly practicing their forms and trying to memorize the form movements.

 

2. Going to the playground everyday. I try to do this. If you watch videos of OT on Youtube, it's basically a big playground. I try to incorporate as much climbing, etc on the playground as much as I can.

 

3. Art - a LOT of art. I went to Hobby Lobby one day and just went on a shopping spree. My kids like to paint and they're learning to crochet.

 

4. Patience...lots and lots of patience...:glare:

 

Not sure if any of that helps. It's hard to deal with all by yourself. I'm really exhausted from them (that sounds like a horrible thing to say). But, that's just how I feel right now.

[gingersmom]

If at all possible I would not rely on the public school and would go for a private evaluation.

 

OT was life changing for my son. The OT at school was a joke, I stopped having my son pulled from class to attend.

[DaffodilDreams]

My Dd has SPD and is gifted - so, 2e. She received therapy and early intervention services, but when it came time to discuss an IEP for school, we were told her cognitive abilities outweigh her needs so they expected her to be able to "get by" without an IEP. This wasn't acceptable to us or to her ped, so we ended up homeschooling. Dd is doing very well at home, and we have no regrets about our decision.

[....]

we were told her cognitive abilities outweigh her needs so they expected her to be able to "get by" without an IEP.

 

I've been told this exact same thing, too.

[DaffodilDreams]

I've been told this exact same thing, too.

 

Ugh! I find it sickening that school administrators are okay with kids just getting by - especially when a child is capable of so much more. I lost all confidence in the system when we were told that.

[....]

Ugh! I find it sickening that school administrators are okay with kids just getting by - especially when a child is capable of so much more. I lost all confidence in the system when we were told that.

 

I don't want to seem negative about the public schools (I could vent all day), but yeah, they really can't deal with it. There's no way I'm sending my kids back. One of my sisters had severe ADHD and watching my parents constantly fight with the ps system has really corrupted my opinion of ps and kids with special needs. :glare:

[PeterPan]

Well you're going to end up wanting a neuropsych eval for a proper diagnosis and to get all the breakdowns on things like his processing speed, working memory, etc. Yes, the OT/SPD stuff plays a part in it. Are you paying for the OT? I only ask, because if you are you might want to ask for more homework and more spaced appointments. A lot of what they were doing in OT, I finally realized we could do at home. I installed a single line swing, brought in a trampoline, etc. So use your dollars wisely.

 

When we did our neuropsych eval (with a np who was admittedly comfortable with homeschooling, something that is very important in your choice), the psych repeated OVER AND OVER that the *small group settings* dd has been in all these years are part and parcel of her success. So yes it's the awesome curriculum and custom teaching, but that same curriculum in a larger group might let her fall through the cracks. She actually falls through even in a class of say 20 like at co-op. Or 10. Small, as in 1,2,3, that's what you're talking. Now the social is TERRIBLY important to some of these kids, and school actually has some benefits in STRUCTURE, the other buzzword they're probably talking about with you.

 

So you're kind of picking your poison, making the trade-off. With homeschooling it's easy to fall down on things like structure. Sometimes the sensory and ADHD is present in one of the parents as well. Maybe your dh (the father) is the one? You might talk with him about his school experiences. He might view it very differently from you. It might be that school provided a structure he needed for success or has other things he admires looking back. So you've got to give and take there. I picked my dh's brain quite a bit before we started homeschooling, and the things we learned were RIGHT ON and saved me a lot of mistakes.

 

Some people on the boards reach compromises like doing yearly testing or having other accountability structures. There are definitely things you can do like that to cut deals that keep him happy. I think testing is good. I think accountability (yearly review with a certified teacher) is GOOD. We have to here in Ohio, and I really think it's wise. You need that feedback so you know you're on track. So offer up some things like that. Find out what the options are that would address his concerns.

 

I don't recommend starting with a whole grade package, only because the materials aren't necessarily going to fit well a SN child. It's a concession you could make, but I'd avoid it if possible. And that doesn't mean you can't have STRUCTURE. Sometimes it's as simple as a weekly checklist or quarterly plans.

 

BTW, the Christian Cottage Unit Studies, Konos, and Winter Promise are all terrific options for these kids. Your ds is at a good age to do FIAR as well. My dd has done well with the VP online history. I'm not saying for right now, but more like K5, 1st, 2nd, around in there. I always had this trouble with teaching my dd, because the curriculum would have a paper craft of a canoe and she didn't want to do it. She wanted to build a REAL canoe! And she didn't want to do paper dolls of the historical costumes. She wanted to sew and WEAR the costumes and eat and live like them! Now she says she wants to be a history teacher, so kids in school will know how fun history really is. :)

 

Ditto the recommend on the private eval for the neuropsych. Definitely find someone who is not anti-homeschooling. Mine wasn't gushing or anything, but he had several homeschoolers come through and had at least a positive impression of them. When he saw dd's test scores (earned of course the hard way!), he said what we were doing was WORKING and that he wouldn't even recommend school for her, that she would fall through the cracks. The neuropsych eval is fascinating, because you get breakdowns that are going to be invaluable to the way you work with him. I had so many things pester me for years that were answered with this one eval. My goal is to evaluate my ds3, who also has an October bday like your ds, the year he is 5. So that will be the year I call him K4. That way I'll have the information for when I identify him as K5, but it will be meshing with the reality of the K5 material I'll already have been teaching him, if that makes sense. I don't know if you'd want to go sooner. I guess just talk with the evaluator. We're already doing speech therapy and keeping tabs on his vision (highly recommend a vision eval by a developmental optometrist!!), so for me the np eval is just for that processing speed and other possibilities I can't see for myself. I just want to KNOW upfront rather than going in blind the way I did with dd. The disgusting thing is that I WANTED IQ testing when dd was little and didn't know how to get it. The places I called blew it off as unnecessary. If I had gotten it, we could have caught this stuff possibly years ago. :(

[SilverFirefly]

Hi all. Thanks for all the replies so far!

 

I am working on getting an official diagnosis for DS (though it doesn’t look like anyone is going to give an SPD diagnosis). Luckily DSs pediatrician has been great. He was very receptive when I initially raised concerns about DSs behaviors and has expressed that he is more than willing to help get DS whatever assessments/interventions are needed. Right now I’ve got the pediatrician, child psych (or whatever she is), and OT all talking to each other trying to work out a diagnosis and paperwork so that DS can get OT. I decided to bypass the PS system (at least for now) and his OT is through a private provider.

 

The schools in our town are considered by residents to be “good”, but I think that really means they are pleasant rather than that they are academically rigorous or have great programs for gifted or challenged children. In fact I looked up their standardized test scores online and thought they were shockingly low (as in only a third of 3rd graders being proficient in reading). A woman I know who works for the PS (as a lunch lady I think) keeps telling me how wonderful their SN program is…but this is the same woman who told me I should stop teaching DS at home or he would be bored at school.

 

DSs behaviors generally involve creating as much noise/movement/touch as possible. They include things like singing at the top of his lungs, banging on the washing machine, bouncing up and down on his chair, making sound effects to go with his handwriting, running and slamming himself into the couch as hard as he can, grabbing, hitting, squeezing, kicking, throwing, tackling, etc. He is incredibly impulsive. And yes, Starbuck, he growls at people…and hisses…and roars…He really likes onions, black pepper, curry, and other very heavily flavored food…but that’s not disruptive.

 

He can also have extremely sudden and violent outbursts. These are usually directed at me or his father, and generally happen when he doesn’t get his way. As an example, yesterday after we finished shoveling the snow and it I told him it was time to go inside he started yelling and hitting the porch as hard as he could with the handle of a broom right next to my elderly neighbor because she had picked up his snow shovel to put it away but he wanted to stay outside and keep shoveling. I don’t know if this type of behavior is related to the SPD or if this is something else entirely. Needless to say my neighbor, who could have been seriously hurt, was horrified (and I was mortified).

Wapati, thanks for the book recommendations. I will definitely check them out. And thank you for clarifying on 2E. I had seen the term before on the board, but I didn’t want to use it if it didn’t really apply to DS.

 

Starbuck, I have thought about putting him in martial arts, but I can’t afford it right now. I do have him in swim lessons, and he really likes that. I try to take him outside or to the playground (we live in New England so the weather doesn’t always cooperate). He does like arts and crafts so I try to give him plenty of opportunities for artistic expression. I definitely hear you on the patience…some days are harder than others. And it is absolutely exhausting…but it helps to finally have professional recognition that his behaviors are out of the ordinary. The thing with DS is that his social skills are excellent so people who don’t know him really, really, really well think he is the best behaved, most engaging kid.

[SilverFirefly]

My Dd has SPD and is gifted - so, 2e. She received therapy and early intervention services, but when it came time to discuss an IEP for school, we were told her cognitive abilities outweigh her needs so they expected her to be able to "get by" without an IEP. This wasn't acceptable to us or to her ped, so we ended up homeschooling. Dd is doing very well at home, and we have no regrets about our decision.

 

This is one of my big concerns with PS. Even if you can find a school that does a great job of working with special needs and gifted kids (and my impression is that most public schools don’t), they don’t have anything for kids who are both. They will just figure that the giftedness and the special needs added together somehow cancel each other out. I just don’t foresee DS being given both the environment/accommodations/etc. and the advanced academics he needs to reach his full potential in a PS setting.

[....]

He can also have extremely sudden and violent outbursts. These are usually directed at me or his father, and generally happen when he doesn’t get his way. As an example, yesterday after we finished shoveling the snow and it I told him it was time to go inside he started yelling and hitting the porch as hard as he could with the handle of a broom right next to my elderly neighbor because she had picked up his snow shovel to put it away but he wanted to stay outside and keep shoveling. I don’t know if this type of behavior is related to the SPD or if this is something else entirely.

 

My 1st grader has these, also. I have no idea what they are or if it's SPD related or if they are just really frustrated. One of my friends (who was a foster parent) taught me some "therapeutic hold" and I had to use that twice. My daughter had hit her face on a piece of furniture during a tantrum and I was terrified that she was going to hurt herself (and I don't even know if that was the right thing to do - I think I was more scared than she was). Ugh. I can't even talk about it.

 

Yeah, I wish there was more help out there. Maybe I need to read more books about it or something.

[SilverFirefly]

Well you're going to end up wanting a neuropsych eval for a proper diagnosis and to get all the breakdowns on things like his processing speed, working memory, etc. Yes, the OT/SPD stuff plays a part in it. Are you paying for the OT? I only ask, because if you are you might want to ask for more homework and more spaced appointments. A lot of what they were doing in OT, I finally realized we could do at home. I installed a single line swing, brought in a trampoline, etc. So use your dollars wisely.

 

When we did our neuropsych eval (with a np who was admittedly comfortable with homeschooling, something that is very important in your choice), the psych repeated OVER AND OVER that the *small group settings* dd has been in all these years are part and parcel of her success. So yes it's the awesome curriculum and custom teaching, but that same curriculum in a larger group might let her fall through the cracks. She actually falls through even in a class of say 20 like at co-op. Or 10. Small, as in 1,2,3, that's what you're talking. Now the social is TERRIBLY important to some of these kids, and school actually has some benefits in STRUCTURE, the other buzzword they're probably talking about with you.

 

So you're kind of picking your poison, making the trade-off. With homeschooling it's easy to fall down on things like structure. Sometimes the sensory and ADHD is present in one of the parents as well. Maybe your dh (the father) is the one? You might talk with him about his school experiences. He might view it very differently from you. It might be that school provided a structure he needed for success or has other things he admires looking back. So you've got to give and take there. I picked my dh's brain quite a bit before we started homeschooling, and the things we learned were RIGHT ON and saved me a lot of mistakes.

 

Some people on the boards reach compromises like doing yearly testing or having other accountability structures. There are definitely things you can do like that to cut deals that keep him happy. I think testing is good. I think accountability (yearly review with a certified teacher) is GOOD. We have to here in Ohio, and I really think it's wise. You need that feedback so you know you're on track. So offer up some things like that. Find out what the options are that would address his concerns.

 

I don't recommend starting with a whole grade package, only because the materials aren't necessarily going to fit well a SN child. It's a concession you could make, but I'd avoid it if possible. And that doesn't mean you can't have STRUCTURE. Sometimes it's as simple as a weekly checklist or quarterly plans.

 

BTW, the Christian Cottage Unit Studies, Konos, and Winter Promise are all terrific options for these kids. Your ds is at a good age to do FIAR as well. My dd has done well with the VP online history. I'm not saying for right now, but more like K5, 1st, 2nd, around in there. I always had this trouble with teaching my dd, because the curriculum would have a paper craft of a canoe and she didn't want to do it. She wanted to build a REAL canoe! And she didn't want to do paper dolls of the historical costumes. She wanted to sew and WEAR the costumes and eat and live like them! Now she says she wants to be a history teacher, so kids in school will know how fun history really is. :)

 

Ditto the recommend on the private eval for the neuropsych. Definitely find someone who is not anti-homeschooling. Mine wasn't gushing or anything, but he had several homeschoolers come through and had at least a positive impression of them. When he saw dd's test scores (earned of course the hard way!), he said what we were doing was WORKING and that he wouldn't even recommend school for her, that she would fall through the cracks. The neuropsych eval is fascinating, because you get breakdowns that are going to be invaluable to the way you work with him. I had so many things pester me for years that were answered with this one eval. My goal is to evaluate my ds3, who also has an October bday like your ds, the year he is 5. So that will be the year I call him K4. That way I'll have the information for when I identify him as K5, but it will be meshing with the reality of the K5 material I'll already have been teaching him, if that makes sense. I don't know if you'd want to go sooner. I guess just talk with the evaluator. We're already doing speech therapy and keeping tabs on his vision (highly recommend a vision eval by a developmental optometrist!!), so for me the np eval is just for that processing speed and other possibilities I can't see for myself. I just want to KNOW upfront rather than going in blind the way I did with dd. The disgusting thing is that I WANTED IQ testing when dd was little and didn't know how to get it. The places I called blew it off as unnecessary. If I had gotten it, we could have caught this stuff possibly years ago. :(

 

Right now (or at least once the pediatrician produces the required paperwork) insurance will fully cover the OT (thank goodness). I will definitely ask about a neuropsych evaluation. He has been checked by a regular optometrist who says his eyes are fine and I’ve never noticed any problems with his vision. What exactly is it that a developmental optometrist is looking for? DS may need speech therapy (this is something that his psych and I are currently looking at (along with everything else). He has a lot of issues with his pronunciation of certain sounds…but not so much because he can’t make the sounds or doesn’t hear them (at least in isolation)…he learned to speak early so he has a lot of mispronunciations that have carried on…

DS is definitely more like his father than like me…but as far as I can tell he doesn’t have any definite sensory issues…though he does have a couple of weird quirks that could maybe be caused by underlying mild sensory issues… From what I have gathered, he wasn’t really successful in school. I don’t mean that he flunked out or anything, but school has never really seemed to be his thing. My instinct is that Joel is actually the opposite of what you are describing and finds imposed structure annoying. I may have to try picking his brain some more. I am totally open to yearly testing (would probably do it at least periodically anyway). His negative reaction to the idea of HSing Noah seemed at least in part to be a knee-jerk type reaction…for some reason it hadn’t occurred to him that I would be thinking of continuing to HS. He did say that “he needs socialization†(DS gets socialization at church and Sunday school, swim lessons, story time, etc.). The irony is that he is very supportive of the HSing I have been doing so far, and he can see the results in what Noah is able to do. Considering that DS is only K3 we do quite a bit of formal HSing (driven by DSs desire to learn). We use Progressive Phonics, Bob Books, Confessions of a Homeschooler K4, Little Pim Japanese, Starfall, Classics for Kids, Kumon, literature and poetry, and more. So it may just be that he has bought into the only-teachers-can-teach and children-need-socialization-with-peers mentality…

[SilverFirefly]

My 1st grader has these, also. I have no idea what they are or if it's SPD related or if they are just really frustrated. One of my friends (who was a foster parent) taught me some "therapeutic hold" and I had to use that twice. My daughter had hit her face on a piece of furniture during a tantrum and I was terrified that she was going to hurt herself (and I don't even know if that was the right thing to do - I think I was more scared than she was). Ugh. I can't even talk about it.

 

Yeah, I wish there was more help out there. Maybe I need to read more books about it or something.

 

This for me is the scariest of his behaviors. It can be so unpredictable and I'm afraid he will hurt himself or me or someone else.

 

It is so nice to hear from parents who know what it is like. It is so frustrating when people say you're probably just overreacting to age appropriate behavior or that your parenting is to blame.

[Tiramisu]

Hi all. Thanks for all the replies so far!

 

I am working on getting an official diagnosis for DS (though it doesn’t look like anyone is going to give an SPD diagnosis). Luckily DSs pediatrician has been great. He was very receptive when I initially raised concerns about DSs behaviors and has expressed that he is more than willing to help get DS whatever assessments/interventions are needed. Right now I’ve got the pediatrician, child psych (or whatever she is), and OT all talking to each other trying to work out a diagnosis and paperwork so that DS can get OT. I decided to bypass the PS system (at least for now) and his OT is through a private provider.

 

The schools in our town are considered by residents to be “goodâ€, but I think that really means they are pleasant rather than that they are academically rigorous or have great programs for gifted or challenged children. In fact I looked up their standardized test scores online and thought they were shockingly low (as in only a third of 3rd graders being proficient in reading). A woman I know who works for the PS (as a lunch lady I think) keeps telling me how wonderful their SN program is…but this is the same woman who told me I should stop teaching DS at home or he would be bored at school.

 

DSs behaviors generally involve creating as much noise/movement/touch as possible. They include things like singing at the top of his lungs, banging on the washing machine, bouncing up and down on his chair, making sound effects to go with his handwriting, running and slamming himself into the couch as hard as he can, grabbing, hitting, squeezing, kicking, throwing, tackling, etc. He is incredibly impulsive. And yes, Starbuck, he growls at people…and hisses…and roars…He really likes onions, black pepper, curry, and other very heavily flavored food…but that’s not disruptive.

 

He can also have extremely sudden and violent outbursts. These are usually directed at me or his father, and generally happen when he doesn’t get his way. As an example, yesterday after we finished shoveling the snow and it I told him it was time to go inside he started yelling and hitting the porch as hard as he could with the handle of a broom right next to my elderly neighbor because she had picked up his snow shovel to put it away but he wanted to stay outside and keep shoveling. I don’t know if this type of behavior is related to the SPD or if this is something else entirely. Needless to say my neighbor, who could have been seriously hurt, was horrified (and I was mortified).

Wapati, thanks for the book recommendations. I will definitely check them out. And thank you for clarifying on 2E. I had seen the term before on the board, but I didn’t want to use it if it didn’t really apply to DS.

 

Starbuck, I have thought about putting him in martial arts, but I can’t afford it right now. I do have him in swim lessons, and he really likes that. I try to take him outside or to the playground (we live in New England so the weather doesn’t always cooperate). He does like arts and crafts so I try to give him plenty of opportunities for artistic expression. I definitely hear you on the patience…some days are harder than others. And it is absolutely exhausting…but it helps to finally have professional recognition that his behaviors are out of the ordinary. The thing with DS is that his social skills are excellent so people who don’t know him really, really, really well think he is the best behaved, most engaging kid.

 

This sounds a lot like my (undiagnosed) sensory seeker. I SO hear you on the sounds and the food. We went through a period of ear-splitting shrieking not that long ago. Lemons, pickles, olives, hummus with olives and artichoke hearts. Ice. Dog bones. :( Yes, I did talk to our ped. and had her blood checked for deficiencies.

 

You might think ADHD, but she really doesn't have attention issues. She just needs constant stimulation. That can be physical and really noisy, but now that she's older, she also gets it through books. Her books are on on every surface throughout the house: dining table, kitchen counter, coffee table, side table, shelf by bed, dresser, bathroom vanity, shelf in entryway, EVERYWHERE! She just can't chill.

 

She is VERY SENSITIVE and depressing life events made her depressed. I've posted on this before and how I decided to send her to ps to see if would help since I had tried everything else. As much as I thought I would never go there, because it was a nightmare for my older dd, this dd is thriving. I've realized it's not good for her to have too much time on her hands. She needs constant structure, and I can't provide it and still meet the needs of the rest of my family.

 

This dd is likely 2e. She's had very basic cognitive testing and was evaluated by a SLP, so we have some outside validation of her strengths. We thankfully have good schools, but whatever her gifts are, I know they won't be developed at ps. For us, sadly, it's a compromise because, if her emotional needs aren't met, (so ironic that this is at ps), her gifts won't develop anyway. It might sound like a cop out, but you wouldn't think so if you lived it. There are also my other dd's who need a reasonable amount of peace in the home for them to be okay and do what they have to do. All in all, for now, school has been our best option.

 

About the third of kids being "proficient," I don't know if I'd worry too much about that. What kind of testing is it? I would bet it's a state test, not a nationally normed standardized test anyway. Dd was "proficient" but not "advanced proficient," probably because she hadn't been in the system long enough at the time of testing to master their "model." In our writing testing, for example, the kids have twenty minutes, I think, to write an essay/story in THIRD grade and the rubrics are tough. They have to brainstorm, write some kind of outline, have a snazzy introduction, appropriate transitions, descriptive words, figures of description, and detail, detail, detail. I saw samples of each level, scores 1-6, and I was not impressed. It's actually the exact opposite of what I want my dc to do. They had detail up the wazoo but it wasn't coherent to the topic. Rabbit trails here and there. But it was considered good because it was DESCRIPTIVE. I'm sorry, but I'd prefer coherence over description any day. The lower scores were better in my opinion because the topic was stuck to and the supporting points were clear. And, the state test for math, dd is likely not particularly gifted in math like she is with her verbal skills, yet she scored "advanced proficient." Can you tell I have little confidence in state tests? ;)

 

One last thing, your family members are probably more patient towards each other than we are. I have one sensory seeker, two sensory avoiders, and one with auditory processing disorder. Do you see where I'm going? We have the worst possible mix of dc with SN. The other dc were pushed to our limits all day long because of their own SN that they don't have control over. This situation had the potential to breed resentment, and it started poisoning the atmosphere in our home. Thankfully, with school, the other dc got a break and could appreciate dd and be happy to see her and play with her after she got home. It helped our relationships. I now see dd making special efforts to be kind and make sacrifices for her sisters. This is a sign to me that she is experiencing emotional and spiritual healing and that school is working for now.

 

Sorry this is so long and self-centered, but perhaps it will give you some things to think about.

[Tiramisu]

This for me is the scariest of his behaviors. It can be so unpredictable and I'm afraid he will hurt himself or me or someone else.

 

It is so nice to hear from parents who know what it is like. It is so frustrating when people say you're probably just overreacting to age appropriate behavior or that your parenting is to blame.

 

Ready for another book recommendation? The Explosive Child. It discusses explosions as well as the more internal manifestations about frustration. It's all about low frustration tolerance. IMHO, this is, without a doubt, the #1 problem of kids with SPD. If this part of SPD got more attention, perhaps people would be more understanding. Even people who have heard about SPD don't know about the meltdown connection.

 

This is what people need to know about SPD: Life with SPD is full of meltdowns. Everything that is essential for life can be hard for kids with SPD. Eating, sleeping, bathing, and getting dressed. Most of the rest of the world takes these basic things for granted, but for kids with SPD, they can cause irritation and frustration and MELTDOWNS. And you have to do them everyday. Well, mostly every day. ;)

 

On top of the four essentials for living listed above, sometimes you have to say "no." And then, with a sensory seeker, you might just trigger a MONSTER MELTDOWN. If you somehow come between a sensory seeker and a desired source of stimulation, watch out!

 

I still get embarrassed about some behaviors, but I think the official CAPD dx got me over that a bit. I've been thinking of how confused my dd was for years because her brain wasn't hearing. How hard it must have been for her, and then not to have anyone help her because we didn't know. I used to be annoyed by the misguided people who told me how I had to teach her to listen, but now I'm thinking more about her struggles and less of my own with other people. KWIM? I need to transfer this sympathy to SPD now, too. It does help that my dc are getting older, and I'm getting older, too.:tongue_smilie:

 

As I'm typing this, I realize, though, how yesterday I was thinking how nice it would be if my dd's looked nice when they went out of the house. I am just so glad to have my sensory defensive dd's dressed at all with shoes that fit the season. I guess it keeps me humble. :glare:

 

Am I on a roll today, or what? :D

 

Sorry, SilverFirelfy.:001_smile:

[PeterPan]

Silverfirefly--You might get the book http://www.amazon.com/gp/product/1598572032/ref=ox_sc_act_title_1?ie=UTF8&m=ATVPDKIKX0DER and try the techniques on your dh and ds.

 

BTW, I know someone (not on the boards) whose dc started off with an ADHD label from a neuropsych, didn't respond well to the typical treatments, and turned out to have CAPD. When your kid looks like something but not quite, then you want to keep looking for answers.

 

And as far as the eyes, no a regular optometrist isn't adequate. I'm not saying he has the eye problems, but it's a very common thing with kids with these types of problems also to have it affect their eyes. You would get him screened by a developmental optometrist. Just do it for his next regular eye exam. I took my ds this year. They checked all his regular stuff and screened for the extra stuff, and it was the same cost as a regular doc, just a regular appointment. It set my mind at ease that he *doesn't* at this point have the developmental vision problems that my dd had. And it's stuff that's easy to catch. They can check his convergence, focusing, etc. etc. without him even realizing it.

[SilverFirefly]

This sounds a lot like my (undiagnosed) sensory seeker. I SO hear you on the sounds and the food. We went through a period of ear-splitting shrieking not that long ago. Lemons, pickles, olives, hummus with olives and artichoke hearts. Ice. Dog bones. :( Yes, I did talk to our ped. and had her blood checked for deficiencies.

 

You might think ADHD, but she really doesn't have attention issues. She just needs constant stimulation. That can be physical and really noisy, but now that she's older, she also gets it through books. Her books are on on every surface throughout the house: dining table, kitchen counter, coffee table, side table, shelf by bed, dresser, bathroom vanity, shelf in entryway, EVERYWHERE! She just can't chill.

 

About the third of kids being "proficient," I don't know if I'd worry too much about that. What kind of testing is it? I would bet it's a state test, not a nationally normed standardized test anyway.

 

I have one sensory seeker, two sensory avoiders, and one with auditory processing disorder. Do you see where I'm going? ....We have the worst possible mix of dc with SN.

 

They do sound a lot alike, except that my DS does seem to have attention issues. This makes it harder to provide the constant stimulation he is looking for. He will want to do an activity I’ve provided but he may not be able to focus and settle down enough to actually do it (this is especially true later in the day). I do have the definite advantage of DS being an only child…so while his behavior is disruptive, I don’t have to balance his interests against those of siblings. I can’t imagine what it must be like to have the combination you do. As far as the test scores go, you are probably right that I shouldn’t worry too much about them. I believe they are reporting scores from our much-debated state test. Part of what makes the low scores so concerning though is that they actually require kids to pass the state test in high school in order to graduate (do the tests magically get easier or the kids magically get better at them? A lot of kids don’t get their diplomas because they fail these tests). I am not a big fan of our state tests…but that’s just another reason I would rather HS…

 

 

Ready for another book recommendation? The Explosive Child. It discusses explosions as well as the more internal manifestations about frustration. It's all about low frustration tolerance. IMHO, this is, without a doubt, the #1 problem of kids with SPD. If this part of SPD got more attention, perhaps people would be more understanding. Even people who have heard about SPD don't know about the meltdown connection.

 

This is what people need to know about SPD: Life with SPD is full of meltdowns. Everything that is essential for life can be hard for kids with SPD. Eating, sleeping, bathing, and getting dressed. Most of the rest of the world takes these basic things for granted, but for kids with SPD, they can cause irritation and frustration and MELTDOWNS. And you have to do them everyday. Well, mostly every day. ;)

 

On top of the four essentials for living listed above, sometimes you have to say "no." And then, with a sensory seeker, you might just trigger a MONSTER MELTDOWN. If you somehow come between a sensory seeker and a desired source of stimulation, watch out!

 

I still get embarrassed about some behaviors, but I think the official CAPD dx got me over that a bit. I've been thinking of how confused my dd was for years because her brain wasn't hearing. How hard it must have been for her, and then not to have anyone help her because we didn't know. I used to be annoyed by the misguided people who told me how I had to teach her to listen, but now I'm thinking more about her struggles and less of my own with other people. KWIM? I need to transfer this sympathy to SPD now, too. It does help that my dc are getting older, and I'm getting older, too.:tongue_smilie:

 

What you are saying makes a lot of sense. He definitely has very low frustration tolerance. The monster meltdown you are talking about seems spot on. I’ve noticed the behavior pattern but not known what to attribute it to (or the best way to handle it since you can’t just say yes all the time). I will have to ask his OT about it. And I will definitely check out the book you recommended. I totally hear you about how hard this is for the kids themselves…seeing how frustrated, confused, and upset DS was/is is what made me start looking for answers (there was just no way that was “normal†and even if it was it definitely wasn’t okay with me). What actually bothers me even more than someone judging my parenting is when they judge DSs behavior as “bad†when he is actually doing really well controlling his behavior. Talk about telling a kid his efforts don’t matter.

 

 

When your kid looks like something but not quite, then you want to keep looking for answers.

 

And as far as the eyes, no a regular optometrist isn't adequate. I'm not saying he has the eye problems, but it's a very common thing with kids with these types of problems also to have it affect their eyes. You would get him screened by a developmental optometrist....They can check his convergence, focusing, etc. etc. without him even realizing it.

 

I think his optometrist actually checked convergence etc…but I’ll have to check to be sure. Thanks for the info. I am definitely looking at this as a process. I think we are moving in the right direction, but I do plan to keep looking for answers and reassessing until I’m convinced we’ve found the right diagnoses and interventions.

[Laurie4b]

Who evaluated your child? The school? SPD is not a diagnosis in the DSM-IV, but it is certainly a diagnosis that OT's give regularly. Was the OT who evaluated your child in private practice or with the school? I would seek treatment for your child as soon as possible from an OT who can tell you about lots of experience with SPD kids and who has a very well equipped treatment room (lots of huge pillows, mats, different swings and gadgets hanging from the ceiling, ropes courses, etc. etc. It should look like an incredibly interesting indoor gym for kids, particularly for a kid who is sensory seeking. Your child should have an absolute blast being in an environment in which he can genuinely satiate his need for sensory input. School OTs don't have equipment like that, and the equipment is needed.

[westcoastmom]

I have heard from several OTs that they are not allowed to diagnose SPD or DCD. However they can explain in a report summary that the findings are "consistent with" or "indicative of" or something along those lines. Then it is usually easier to get a pediatrician to diagnose.

[SilverFirefly]

Who evaluated your child? The school? SPD is not a diagnosis in the DSM-IV, but it is certainly a diagnosis that OT's give regularly. Was the OT who evaluated your child in private practice or with the school? I would seek treatment for your child as soon as possible from an OT who can tell you about lots of experience with SPD kids and who has a very well equipped treatment room (lots of huge pillows, mats, different swings and gadgets hanging from the ceiling, ropes courses, etc. etc. It should look like an incredibly interesting indoor gym for kids, particularly for a kid who is sensory seeking. Your child should have an absolute blast being in an environment in which he can genuinely satiate his need for sensory input. School OTs don't have equipment like that, and the equipment is needed.

 

I have heard from several OTs that they are not allowed to diagnose SPD or DCD. However they can explain in a report summary that the findings are "consistent with" or "indicative of" or something along those lines. Then it is usually easier to get a pediatrician to diagnose.

 

At this point everything is being done outside the PS system. The OT is part of the big hospital system here. The evaluation was done in a screened area with lots of toys and stuff, but no indoor gym...it is a large facility though, so maybe I haven't seen everything??? DS has an appointment this afternoon so I will have to ask.

 

DSs pediatrician has finally sent over the orders for the OT, so I'm anxious to find out if there is a diagnosis included. The OT and pysch were very clear in stating that they could not diagnose. From what his doctor said, he will have to diagnose him with something else (perhaps ADHD, even if that turns out not to be quite accurate). My understanding is that if he gives an official diagnosis of SPD, insurance will not cover those treatments. Is my understanding correct?

[Tiramisu]

At this point everything is being done outside the PS system. The OT is part of the big hospital system here. The evaluation was done in a screened area with lots of toys and stuff, but no indoor gym...it is a large facility though, so maybe I haven't seen everything??? DS has an appointment this afternoon so I will have to ask.

 

DSs pediatrician has finally sent over the orders for the OT, so I'm anxious to find out if there is a diagnosis included. The OT and pysch were very clear in stating that they could not diagnose. From what his doctor said, he will have to diagnose him with something else (perhaps ADHD, even if that turns out not to be quite accurate). My understanding is that if he gives an official diagnosis of SPD, insurance will not cover those treatments. Is my understanding correct?

 

 

I'm not sure what the rules are on this. In our case, several years ago, the pediatrician made the referral to the OT for evaluation and treatment of SPD, and insurance covered it. It was a very limited benefit, though: a 60 day block of treatment, once ever.

[Laurie4b]

At this point everything is being done outside the PS system. The OT is part of the big hospital system here. The evaluation was done in a screened area with lots of toys and stuff, but no indoor gym...it is a large facility though, so maybe I haven't seen everything??? DS has an appointment this afternoon so I will have to ask.

 

DSs pediatrician has finally sent over the orders for the OT, so I'm anxious to find out if there is a diagnosis included. The OT and pysch were very clear in stating that they could not diagnose. From what his doctor said, he will have to diagnose him with something else (perhaps ADHD, even if that turns out not to be quite accurate). My understanding is that if he gives an official diagnosis of SPD, insurance will not cover those treatments. Is my understanding correct?

 

That is true: insurance doesn't cover SPD. SPD is not typically (some professionals would argue never) a stand-alone diagnosis. My ds also had some issues with coordination, so that's what he was diagnosed with for OT at a large hospital. The OT did do the diagnosis. That was also true at the private OT we first went to. Whether or not OTs can make a diagnosis may be dependent on institution or a particular state's rules. But whether they are the one who formally signs off on the dx or not, they are the professional best equipped to do the actual dx in most cases.

[Tiramisu]

That is true: insurance doesn't cover SPD. SPD is not typically (some professionals would argue never) a stand-alone diagnosis. My ds also had some issues with coordination, so that's what he was diagnosed with for OT at a large hospital. The OT did do the diagnosis. That was also true at the private OT we first went to. Whether or not OTs can make a diagnosis may be dependent on institution or a particular state's rules. But whether they are the one who formally signs off on the dx or not, they are the professional best equipped to do the actual dx in most cases.

 

If this is true, I'm wondering why our OT for SPD was covered by insurance. The initial referral/script from the doctor definitely said "Sensory Processing Disorder". I remember it clearly because I had never heard that term before. I only knew SID, not SPD. After the initial evaluation was made, was it still SPD they were covering? I was never asked for another referral or script. I know the initial report stressed the weaknesses (muscle) that the testing picked up, and I remember thinking that was strange because that's not why we were there and wondered if it had something to do with insurance coverage. Interesting...