trying to understand spd

[plantmama]

My ds (6.5) was evaluated last year in kindergarten and the OT said he definitely has sensory issues as well as low muscle tone and trouble making social connections. We knew all this and had been trying to get him evaluated since his preschool teachers recommended it. He receives OT once a week in school, meets with the school social worker to work on social stuff, and now finally we have an appointment to get OT outside of school (it's taken 8 months of being on the waiting list).

I'm having A LOT of trouble parenting ds right now. I have 2 younger children, 1 who is only 1, and I just can't always deal with how time consuming every interaction needs to be. He has regressed so much over the summer. He makes strange noises all the time and his face is often twisted into a little snarl. He is very physically sensitive but I would classify him sensory seeking, because he loves loud music and fair rides, that sort of thing.
Do any of your kids with spd issues have social problems as well? My ds really only has one friend and she has issues too. He's a pretty friendly and well meaning kid but the older he gets the more socially awkward and inappropriate he gets.
I'm getting very burnt out and I don't even think I'm helping him anymore.

[APToddlerMama]

I just have a second here. I know how draining it can be... Have you read The Out of Sync Child? Looked at his diet at all? We noticed a major decrease in sensory issues when we took dairy out of my son's diet.

[plantmama]

Thanks.
No I haven't. I've only read things online and not found anything too helpful. Does this book have parenting strategies? I'll look for it.
We took dairy out for 2 weeks and it was really apparent that it helped. Unfortunetly he eats at school whenever he can. It's really hard to restrict because most of the kids eat at school and he feels left out which makes me cave.
Things have gotten to the point where I am thinking in those terms though. I was thinking of either doing dairy again or gluten or maybe both and then seeing which one is worse. I should have done this over the summer but I was too stressed out.
thank you!

[OhioJenna]

My son is about to turn 4, and at the beginning of treatment (he starts OT next week, hurray!). He definitely has social issues ~ he always plays on the outskirts of a group, never with the other kids, he's starting to hit for no reason, etc.

He makes a lot of noises, too ~ growls, snarls (happy ones), screeches, moans, etc. Sometimes he makes them when he's really focused on one of his favorite things (flashcards, mainly), and sometimes when he's just playing.

I can also relate to the difficulties of having other kids, too ~ we have a 7.5 year old DD, a 20 month old DS, and I'm 7 weeks pregnant with our 4th.

((hugs))

[sarahr]

My dd was also just evaluated and the OT recommended treatment. My main concern is her inability to interact in groups -- she just hangs out on the fringes. And the OT also noticed some gross motor problems.

I can't decide what to do about therapy. I want her to feel more comfortable with other kids, but don't quite get how individual therapy will help with that.

[jen&james]

Your son sounds like mine. He is 5yrs old and has low muscle tone, sensory issues (mostly sensory seeking) and social issues. It is really hard to watch him struggle with other kids. I also have a 2.5yr old and a baby due in Dec. I homeschool him also becasuse I worry that too many negative interactions with other kids will affect his self esteem. I try to organize playdates with kids he knows and has fun with so he can practice social interactions in a safe place. I also recommend the out of sync child and also "sensory integration and the child" by Jean Ayers. My son has been in OT since last April and speech since June and I can see a big diffrence. We also have a sensory diet set up here at home. I can ususally tell when he needs a certain type of stimulation and will recommend his sensory swing, trampoline or crash pad activity. When he is overstimulated we do shaving cream on the table orthese cool orbs(polymers) we got of steve spangler science. Maybe your OT could give you some help in setting up some activities to help him re adjust himself. Good luck, know it is hard. We have good days and bad days.

[LynnS6]

For reading, I'd suggest The Out of Sync Child Has Fun first -- it's got more practical things that you can do than The Out of Sync Child. Since you've got 3 little ones, I'd start with the books that are going to be most practical.

I'd then recommend Sensational Kids -- it's a bit more descriptive, but there's a section at the end of every chapter giving suggestions for how to help the sensory needs of each type of child. You could even skim the chapters and just read the chart at the end of the chapter!

In terms of social development, ds' social development was definitely delayed, along with his motor skills, mostly I think due to the SPD. IMO, he was spending so much time trying to regulate his senses, he had no energy left over for social stuff.

Even after OT, his social skills have been a little delayed. That, I think, is his general developmental trend. Luckily, he's not a very outgoing child, so other kids didn't really notice. It doesn't help that his birthday is in late spring, most of the kids in the neighborhood and our social group are girls with good social skills, and that he's tall for his age. All of these things lead people (including me at times) to expect more of him socially than he's developmentally ready for. He's caught up tremendously in the last year or so. So, OT and time have really really helped. My brother was also slow to develop socially.

Finally, is the OT at school working on sensory stuff or just motor stuff? Very often school based OTs don't work on sensory stuff because it (supposedly) doesn't have a direct educational impact.

[kme]

Your son sounds A LOT like mine. My son's dx is SPD primarily sensory seeking. He does have some social issues. He has trouble with groups and often just tunes out when there are a lot of kids around although he usually does OK one on one. He doesn't really have any friends although he plays fine with his sister who is one year younger. (He just turned 7).

He has been going to OT for over a year now. That has helped me get him on a sensory diet which helps the sensory seeking but has not helped him socially. He also does Therapeutic Listening and speech therapy. He is also off milk. Testing showed he is sensitive to it. I have seen some improvement but nothing dramatic.

I would also recommend "The Out of Sync Child" as well as "The Mislabeled Child" by the Brock and Fern Eide. There is a good chapter in there on SPD and the book covers many other disorders, etc - some of the other chapters were helpful to me as well.

Despite all the therapy, there are some days that are still awful. I have 3 other kids and like you, I am spread thin. He has good days and bad days - like everyone else but his bad days are VERY BAD days!!

Hugs.

[plantmama]

Thanks for all the advice! And the sympathy
I think part of my problem is not taking his struggles seriously enough.
Have any of you ought therapy for yourselves as well!
I just talked to his OT at school and she said she does do sensory work with him. I believe she specializes in sensory OT so I was really excited that she was the school's OT.
He also started gymnastics last winter which really improved his balance and agility and muscle tone.
We don't do any of those sensory things at home but those are good suggestions! I think that might really help when he is feeling out of control. He does jump on the furniture a lot, which I don't mind. But maybe a little trampoline would be good.
I think the social component can be the hardest for me because it feels so painful to see him struggle.
We were at the playground the other day and a whole group of kids were being so mean to him. Then he started bumping into them with a bike and being really inappropriate and the other parents kept trying to urge their kids away from him instead of encouraging them to play with ds. Then when we left (in the worst way possible) the kids gathered at the fence and cheered! That kind of thing makes me so sick!
Luckily the kids at his school seem to be very nice and friendly to him. But he doesn't always respond, so frustrating!
Anyway, I am going to try and get those books from my library.
And it's good to know that perhaps age will help.
Thanks!

[shnitzel]

There is an amazing picture book called "Arnie and his School Tools" http://www.amazon.com/Arnie-His-Scho.../dp/1934575151 that I would recommend. It helps the kid feel normal and talks about what he may get in OT to help in school. It's also a simple tool to help the teachers and yourself understand what is going on.
My brother has SPD and is the same age as your son. He also has social issues, which are likely also related to not having siblings close to his age and he can be very aggressive and wild so the kids he does want to play with often have similar issues.

[APToddlerMama]

Originally Posted by plantmama

Thanks.
No I haven't. I've only read things online and not found anything too helpful. Does this book have parenting strategies? I'll look for it.
We took dairy out for 2 weeks and it was really apparent that it helped. Unfortunetly he eats at school whenever he can. It's really hard to restrict because most of the kids eat at school and he feels left out which makes me cave.
Things have gotten to the point where I am thinking in those terms though. I was thinking of either doing dairy again or gluten or maybe both and then seeing which one is worse. I should have done this over the summer but I was too stressed out.
thank you!

You know I was so stressed about changing diet that we waited quite a while before we did it too. The first time I went grocery shopping for him, I literally cried at the grocery store because it seemed so overwhelming. Within about two weeks though, we were so in the swing of things, that it was hard to imagine that I ever felt so overwhelmed. The difference in behavior and mood was so *completely* worth the struggle we had with taking away basically 95% of what he had been eating. We look back at videos and are shocked about the level of sensory seeking and avoiding we can see. There are still some sensory issues but they are so drastically improved I had practically forgotten how bad it had been. The Out of Sync Child also suggests looking at dairy and wheat...I really would try it. Even if it doesn't work, you probably won't ever regret having tried it. OT is great, but at least for us, OT couldn't even come close to producing the changes that pulling dairy and wheat did.

[Emmeline II]

Originally Posted by sarahr

I can't decide what to do about therapy. I want her to feel more comfortable with other kids, but don't quite get how individual therapy will help with that.

I would look for a therapist that also did groups. Our dd will be ds' "group" but if that is not enough we will look for larger 'group'.

[beachcomber]

My DD has sensory issues, poor balance and gross/fine motor delays and trouble with socializing. She does her OT in a clinic, not in school. Part of her OT involves facilitated play and it's helped tremendously. Lots of agencies that provide service to kids with autism have special groups/classes for social interaction. Check those out if you can.

[SpottedFoxx]

I have a "sensory diet" I can share with you if you like. Just PM me with your email address.

It's not a food diet but a sensory diet. It gives a ton of ideas to try with your child. Not everything will work but when you find things that do... keep them as part of your son's toolkit.

My son does well with weighted items so we have a weighted pillow and he uses a weighted vest at school. Squishy balls, pushing the walls and monkey walks also help. So do floor scooters. It's a process to figure out what makes your child feel grounded and secure.

My son is a seeker. I explain it this way. It's like he has bubble wrap around him and has to work extra hard to get sensory input. For kids who are avoiders, it's like they have thin skin and things we would never imagine being effected by (let alone bothered by) are like razor blades (seams on clothing for example). Some kids are both. While my son is primarily a seeker, he hates loud noises.

[plantmama]

I'm going to give him a month of school lunch and then we'll definitely try the gluten and dairy free diet. School lunch is just sooo important to him (though I'm not a big fan!) Thanks for the perspective! That the first little bit will be tough but once we are used to it it will get easier.

He doesn't have any trouble eating so I don't know if he needs a sensory diet. I feel like his spd is hard to pin point (though his school OT saw it very clearly) because he's not funny about things like tags and food, things you always hear about. He does get very wound up in loud, unstructured environments but otherwise he does seem to crave loud, bold sensory experiences.
Gymnastics has been great and we are thinking of trying rock climbing at an indoor wall this winter for strength building as well as an intense sensory experience.
Maybe he is uncomfortable with an extreme sensory experience until he feels control over it or gets used to it? The ocean for example. He would freak out about it until he learned to love rolling around in the waves.

Anyway, it is wonderful to have these ideas and words of wisdom. I really have been feeling very isolated in this parenting experience and it is great to hear your stories and ideas!

[plantmama]

Also, I don't know about the group OT. Maybe once they see him they will offer that? I think my husband and I might need it with just him at first (dh and ds CLASH right now and dh thinks we just need to take control) so we can get some ideas on how to work with him on his struggles.
But a group sounds like it might be really interesting.

[plantmama]

I just ordered the "arnie" book and the out of sync child. The out of sync child has fun looks good too.
All the reviewers of the o.o.s.c has fun book had children with autism. What are the distinctions between autism and spd? I know autism is a lot more intense?
Sometimes I say that ds acts autistic and a friend of mine who has a b-in law who is autistic says that's not what it is, but it's hard for me to pin point the differences. I've only ever met people who are pretty severely autistic, like no words etc...
I have another friend who calls all these sorts of things "autism".
I feel fairly lost in all these diagnoses.

[APToddlerMama]

Originally Posted by plantmama

I just ordered the "arnie" book and the out of sync child. The out of sync child has fun looks good too.
All the reviewers of the o.o.s.c has fun book had children with autism. What are the distinctions between autism and spd? I know autism is a lot more intense?
Sometimes I say that ds acts autistic and a friend of mine who has a b-in law who is autistic says that's not what it is, but it's hard for me to pin point the differences. I've only ever met people who are pretty severely autistic, like no words etc...
I have another friend who calls all these sorts of things "autism".
I feel fairly lost in all these diagnoses.

The Out of Sync Child explains it really well. What our OT told us was that (virtually) all kids with autism have spd, but not all kids with spd have autism. Kids with SPD may have many behaviors look like autism, but may not meet criteria for autism.

Regarding your other post about feeling "lost"...I have really noticed that a LOT of kids have sensory issues that aren't noticed by their parents. So you may find that you know more kids than you thought that have sensory processing issues but no name or diagnosis for it.

[SpottedFoxx]

Originally Posted by plantmama

He doesn't have any trouble eating so I don't know if he needs a sensory diet.

A sensory diet has nothing to do with food. It's a listing of things you can do with your child to help him improve his sensory integration. Deep massages, squishing him between pillows, making him carry heavy (but not too heavy) objects, etc. It's a PDF but I'll see if I can do a cut and paste.

Nope - not able to cut and paste

[plantmama]

Oh, got it now
I'll pm you.
I have noticed a lot of children with spd (or so it seems) too. My other 2 children have minor sensory issues I would say but they haven't as yet interfered in living a normal life, feeling comfortable in the world, etc. My almost 4 y/o is a tag hater, only wears pj pants etc..., my 13 month old dd is a sensory seeker, but she was also raised in a household with 2 wild older brothers