I feel like we've gotten nothing out of OT (SPD kid)

[Aufilia]

Vivian is 4 1/2, and as far as I can tell she's always had sensory trouble. But it seemed much milder when she was younger. We had her evaluated when she was about 3 and the neuro ped suggested that her issues were mild enough she might just grow out of them. Well, that didn't happen. They got worse, way worse. (This may also be in part because since about the time she turned 3, we've had a lot of stress in our lives -- pregnancy, job loss, new job, different parent at home, new baby.)

Her issues come out as misbehavior. She gets wild and can't stop acting out. She gets wound up and literally tenses up and shakes. She mistreats her school materials, bosses the other kids around, and talks over and through anyone, anytime. She doesn't listen well to anyone. (She misses so much of what I say that I actually took her to the ped a few months ago to have her hearing checked.)

Discipline is not useful. I mean, when the issue is that she can't calm down, rather than that she won't calm down, how can telling her to be quieter or use words instead of hands or whatever really help much?

Anyhow, so we started OT in March. Our insurance plan only approved 20 weeks and refused to approve more OT. (Which sucks; the insurance we had before I got laid off was awesome. I almost wish I'd kept her on a COBRA plan.) Insurance has yet to approve PT, which we were evaluated for at the same time. Insurance is a bunch of UAV's, and I can't seem to get a straight story out of them or the therapy office about what the problem is.

So DD loves going to therapy, but it seems to have made no impact at all on her behavior. The week before school started I finally told her therapist that I wanted 10 or 15 minutes set aside to show me how to brush and tell me about how to use a weight vest and stuff. She showed me the brushes, told me basically any brush DD liked was ok. I don't have a plan or schedule for brushing, I've never even seen it done. She didn't really show me how to do joint compressions either. The Internet says I should do brushing and joint compressions every 2 hours. We did that today and had a good day, more or less. Although pretty much anything would've been better than yesterday, when the baby ended up with a bloody scratch down his cheek.

Also, I'm tired of everyone thinking we must be terrible parents because of the stuff she does. The non-AP parents think we're obviously too lax on discipline. The AP parents look down their noses because we aren't GD enough. A very AP friend I've known for 2 decades very condescendingly told me not long ago that I just need to get down on her level and look her in the eyes and have a conversation... riiiiight. The only thing that happens when you try to look her in the eyes is you spend the next 10 minutes trying to get her to look into your eyes!!

I guess I'm really just venting here.

I'm not sure what to do. We definitely need a new OT office anyhow because they won't let us come every other week, yet that's all insurance will let us do. So far I can't find one that isn't way the heck out of the way, and the only independent ped OT I have tracked down doesn't take our insurance.

[laurata]

I have no experience or advice with this, but I am SO sorry you are going through this struggle. Do you think the school district could offer some OT? She might not qualify, or might not qualify for much, but it seems worth your time.

[NightOwlwithowlet]

Lots of hugs. We went through a lot of this when DS was younger. Have you had her evaluated by the school district? If you live in the US, the school district will evaluate her and provide services. The quality of services and what is provided varies greatly by state, but DS's best OT was provided by the district and the services are free.

Regarding well intended people with lots of useless advice, ignore them. The same people who use to tell me how I needed to do this or that, are now amazed at how well DS turned out. Did they seriously think I hadn't tried every approach I could think of? I hadn't read every book I could find? Or tried every suggestions his therapists had?

[Rose-Roget]

Ds just turned 6 and we just started him in tx a couple of weeks ago. I've seen some very nice changes since we started, and I'm so sorry that you haven't.

If you are able to continue or get her back into therapy, now that the 20 sessions have probably expired, I would suggest looking at a different OT. A major piece of therapy is parent education. In fact, our OT's told us that the most changes will come about with the home-programming that's put into place.

We saw some immediate results with the brushing. For the Wilbarger brushing protocol, there IS a specific kind of brush. It's a surgical brush, like you probably got at the hospital for hair brushing when your babies were born - little white plastic brushes with extremely gentle bristles (like this: http://www.amazon.com/Clippermill-Se.../dp/B001U1UFYE ). We learned to do firm pressure (these things are so gentle, they don't scratch), quickly in a downward motion on arms, hands, palms, legs, feet, soles, back and bottom. Never do the tummy or chest. Your dd could brush her face or head, if she chooses, but they recommend that that's personal space and not to invade it. Immediately following brushing one arm, do 10 quick, firm but not painful compressions of the wrist, elbow, and shoulder (any order). Repeat with each arm and leg. No compressions on the back. It's recommended to be completed every 90-120 minutes; however for ds they recognize that this is not always possible and said to do it as often as possible and to fit it into our routines at home.

Our OT's are also continuing to work with us on a home sensory diet and we are on the waiting list for Therapeutic Listening which can target some other of ds's sensory areas.

I'm sorry that things aren't working out for you. And I completely understand what you mean about being judged as a parent. It's really hard because if you're like me, you know that you dc has got to feel awful about not having control of her feelings, actions, and emotions. I try to be as loving as possible, but I also need to be extremely firm with ds many times. I know that I'm doing it to help him and because I love him. As you do.

[Aufilia]

We did have her evaluated by the school district around the time she turned 3. They offered her 1/2 hour of OT services per week but ONLY if we enrolled her in their special needs preschool. We weren't otherwise impressed with the preschool program, though -- it's a long distance away (our school district is huge), the program was geared toward teaching the veeeery basics (DD was starting to read by the time she was evaluated--she's well ahead in academic-type stuff and fine motor skills). Their 1/2 hour of OT per week works out to about the same as what our insurance covers anyhow, and she was already enrolled in a preschool that we really like.

Rose-Roget, thank you for the description of brushing and compressions. I have one of those little brushes and had asked if that was the right brush (the ones they sell for excessive prices on Amazon looked very similar) and her OT said to use any brush that DD liked. I had a feeling I was all wrong with joint compressions and I can tell I am; we'll try doing more like you described.

I called my insurance this morning and they claim not to know anything about approval for PT. Aaargh. I'm totally going in circles with the PT. I think I'm going to call some other PT places and see if I can find somewhere to maybe even do PT twice per week the rest of the year... might as well use up all our PT allowance if we can...

[Emmeline II]

A lot of that sounds like ds, particularly the school issues and not sticking with eye contact, though he didn't start school until 5.5. If OT isn't helping at all, there may be other issues preventing her from getting anything out of it...

We finally took him to a psychiatrist who diagnosed him ADHD (not a shocker) and agrees with us that he may have Aspgerger's as well. We started ds on Concerta a week before school started and were SHOCKED that he came home with "happy faces" every day. Though he doesn't have that great a week every week, things are still pretty good. He has a 504, the teacher nominated him for the gifted program (his K teacher talked about it but his behavior overshadowed it), and I'm really hoping he gets a spot in the Lego Robotics club. He even has a buddy that he says he would sit next to even if he didn't share his gummy snacks!

Before the psych we did take him to a family therapist who didn't really have an impact on ds and had a lot of things in his office that ds couldn't touch . Now he does play therapy with a CBT.

[justKate]

Originally Posted by Rose-Roget

For the Wilbarger brushing protocol, there IS a specific kind of brush. It's a surgical brush, like you probably got at the hospital for hair brushing when your babies were born - little white plastic brushes with extremely gentle bristles (like this: http://www.amazon.com/Clippermill-Se.../dp/B001U1UFYE ). We learned to do firm pressure (these things are so gentle, they don't scratch), quickly in a downward motion on arms, hands, palms, legs, feet, soles, back and bottom. Never do the tummy or chest. Your dd could brush her face or head, if she chooses, but they recommend that that's personal space and not to invade it. Immediately following brushing one arm, do 10 quick, firm but not painful compressions of the wrist, elbow, and shoulder (any order). Repeat with each arm and leg. No compressions on the back. It's recommended to be completed every 90-120 minutes; however for ds they recognize that this is not always possible and said to do it as often as possible and to fit it into our routines at home.

Are you doing any sort of theraputic play at home? Do you have a swing?

I'm sorry you're going through this.

[LynnS6]

I'd look for a new OT. Our OT's advice about brushing (and joint compressions, they go together) was very specific both about the kind of brush and the timing. We started with every 2 hours, with a specific surgical brush, followed by joint compressions. Eventually, we were down to every 4 hours, then twice a day, and then we stopped when he didn't need it any more. It sounds to me like your OT doesn't understand the protocol.

We were also given a home diet of sensory activities to do.

But overall, if you feel your daughter is not benefiting from a therapy, you can and should find someone who meets your needs better. These people are service providers. They have to provide a service worthy of having.

Have you read the book "Sensational Kids"? I love it because it gives specific ideas about how to help kids with various kinds of SPD, and it acknowledges the reality that many insurance companies won't pay for 'enough' OT. (I can also look up the codes that our OT said to use that got our insurance to cover more OT, if that's helpful. Just PM me.)

[Peony]

I second looking for another OT. We ended up traveling (and paying out of pocket) for OT for DD1's SPD. Made such a difference because they taught us what to do at home. And I am also a huge fan of Sensational Kids, we actually went to the author's clinic.

[flowmom]

My son has SPD and ADHD...and the ADHD may actually be more of an issue than the SPD in terms of his chronic behaviour problems, not listening, etc.

I agree with you that consequences, etc don't seem that helpful when a child is out of control. Most GD is based on being able to communicate with a child (ie the child is able to listen/discuss etc). I did read a book about ADHD that recommended timeouts. Ha! I've always thought that that wouldn't work for ds because he would never comply. But the book made it clear that extreme effort might be required on the parents part (e.g. putting child in time-out place 25 times in a row until child accepts it). I don't have the answer about discipline. The fact is that most parents DON'T get it, and anyone who is familiar with ADHD IME does get it and they don't necessary have instant fixes.

I recommend that you figure out if ADHD is part of the issue since there are ADHD resources that are helpful (though so many that it can be hard to pick something that resonates).

Regarding the OT...we got a clinical consult for OT and we were told that the therapy relies on parental involvement, creating a "sensory diet" for home, etc. It's not realistic to get results from one hour a week or whatever. A lot of the books on SPD aimed at parents have great ideas for DIY stuff so I recommend that you start experimenting with those.

Unfortunately my experience has been that the main thing that helps ds is vigorous outdoor exercise. Great...but not always convenient when weather is grim or younger sister not up for it, etc. I'm hoping that OT may be able to help us find activities that provide alternatives to that.

hugs. I feel your pain.