Trying not to be too vent-ish here but a little frustrated. My daughter has had her SPD diagnosis since she was 3, she is 5 now. She's very bright and verbal and does have some motor skill delays. She is so incredibly intense, insatiably sensory seeking, contantantly exhausted and hyper at the same time, needs constant 1:1 attention to direct her behavior, sleeps poorly, stuck on potty training and can't handle being in any sort of class setting with other children without a massive meltdown.

We've had a lot of success with biomedical stuff but with OT not so much. My daughter thinks it's really fun but we just don't see any improvement from it. Biomedical can't do everything I don't think though, so I've continued to try to persue OT in different ways.

Recently we paid a fair amount of have a new OT evaluation at a place that is more focused on SPD and the OT's are certified in that area. I think the evaluation is giving us a lot of valuable information about our daughter's motor deficits and her propoceptive issues and that's great but it's not what I really need. Our family is constantly exhausted and overwhelmed and we can't do things normal families do because of sensory stuff but yet they want to sit and work with her and how to hold a pencil. I know holding a pencil is important but at this point it feels a little like straightening the pictures in a burning house. Basically I'm just wondering, if an OT is not going to help us with the issues that are really effecting her and our family, who could?

We havent done any OT since about 2nd grade. I thought it was good for getting an understanding of what was going on with my son and to get ideas for what to do with him at home. (We went to an OT place for kids with autism and SPD.) But now that he's older his sensory issues seem to be less of an issue and our challenges are more socially related and dealing with his anxiety. He can handle the sudden loud noises, he can handle the light being too bright, he can eat hot food now, he lets me cut his toenails without tears. He still bumps into things and over reacts to small cuts or bruises, but for the most part, he has learned to cope with the overwhelming sensory input.

Honestly, up until he was about 8, we were just trying to get through the day with as few meltdowns as possible. From 6-8 is a blur to me. Partly from dealing with his SPD, partly dealing with my own depression triggered by a miscarriage, partly dealing with MIL being diagnosed with cancer and dying 2 months later. But anyway, I digress.

I think being exhausted and overwhelmed and not do things other families get to do sounds normal to me. It sucks, yes. But it gets better. As she matures, as she gets older, as those neurologic connections are made, things will get better.

Between 2nd and 3rd, his ability to handle the sensory things greatly improved. Starting with 3rd grade, we've been dealing with social issues. He started seeing a psychologist and joined a social skills group almost two years ago. He's learning how to be a friend, how to behave appropriately in different situations, learning scripts for what to say to people in conversations, etc.

He's come a long way since Jan 2008 when he was diagnosed. He's going into 5th grade now. I'm not sure where we would be now if he had been diagnosed earlier. It's hard to say.

When my son was doing OT, very little of it was how to hold a pencil. His mostly related to heavy muscle work and proprioceptive sense. At school he went on the playground swings, punched punching bag, maneuvered on the sitting scooter thing, jumped on trampoline, wheelbarrows, did cross-line brain activities (can't remember the right term). At the Ped OT center, he did the scooter thing too, went through an obstacle course sort of thing, including a tippy swing and ball pit, etc.

I would definitely look more into the new OT place, sounds like the other one was not SPD based. Try the new place for a while. She may be too young for a social skills group now but I think when she's 6, it might be beneficial to look for a group. You could look for either a behavioral psychologist or a psychologist who specializes in SPD and autism spectrum kids.

I don't know if this is just rambling or if anything is helpful.

It is so frustrating to pay huge amounts of money for very little progress. It feels like that's been my life's experience with the Medical/Industrial Complex. One thing I have learned, if you're not getting what you need from a practitioner, trust your frustration. Move on to the next one. Good luck!

Thanks I spoke with the OT more today and I think she gets the connection to the behavior issues, we are just beginning the OT process again so I want to give it a chance. This place and the OT are focused on sensory integration and she feels that this will reduce her anxiety and intensity and therefore help with behavior. I would say it's at least worth a try. I guess selfishly it boils down to I wants some of these theraputic hoops I am jumping through to in some small way make life easier and saner.

I am sorry you are going through all of this with your daughter. I too, do not feel like I trust our new OT. We have only been with her for a month or so, but the lady who did my son's evalutation seemed so much better with the SPD related issues. THis lady does not seem to want to give me a sensory diet for him -- she is like "yeah, you can do this or that" and when I ask how long, how often, what should each day look like at home to help him, etc... she is very flippant about her answers. I do LOVE his feeding therapist though. SHE is AWESOME! I am going to do like you -- ask and make sure that she is really SPD focused. It just does not feel that way. I am looking forward to taking a biomedical approach to this as well and will be seeing our DAN! doctor for my son on Monday!!! HOORAY!... Keep us posted on how it goes at the new place.

Hopefully, you will see some results. Lynn, it is good to hear that they do somewhat outgrow some of these things.

Ashlee

You described my daughter who is 6 now. I sooooooooooo can relate but honestly I say to everyone don't limit yourself. If you had a child that was in a wheelchair would you not take them places. My daughter has tons of meltdowns.. I know her cues though and usually can talk to her before she erupts and sometimes I can't . One time she did this in the school parking lot. The principal had the audacity to say you must have been so embarrassed (this was before I even knew what SPD was) I told her no I was not embarrassed I was concerned and trying to figure out how to help her so she would calm down.. Lets face it people are going to judge people are going to misunderstand but you know that there is an real issue so don't let it hold you back. But do prepare yourself. I think as far as OT goes we have not gotten into it that much yet but my OT has helped with behavior already alot. She told me that kids at this age do not see themselves and they see others more and the way to get them to see how their behavior is not hmmm proper is you have to really control your reactions from voice tone, to facial and body language... So when my little princess starts up... I calm down and say hold on touch her arm to make sure she focuses on me.. I ask if she thinks mommy is angry, She says no, I ask am I yelling she says no, Am I kicking she or jumping around, she says no am I saying not nice things.. She says no then I flip it and ask if she is doing it...It is amazing but she actually calms down. Every child is different but that really helped me with her behavior. Also the normal things that bother us like hunger fatigue and being uncomfortable I need to make sure these things are under control because that is an automatic path to meltdowns. We all get cranky when those things happen normally but for them it is so much worse so she said to make sure she is always well fed, well rested and that before we leave the house her clothes are comfortable. Those were all suggestions all from OT and from one visit. They heard a meltdown of Kays and I was almost in tears so they know how hard it has been for me. She also wants to address her sense of control over her enviornment. She can be bossy and very dominant but it is a sense of controlling what happens around her to protect herself from unexpected things... Yes my OT wants to work on handwriting and other challenges but for me in school the behavior is my biggest challenge... I would so be upset like u if they just focused on the technical aspects yes they need work but there has to be work on all ends.

Not sure what everyone means about biomedical solutions will look into it. I really hope things go well for you I know how draining those meltdowns can be... Hope any of what I wrote can help. Hugs to you and your daughter