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More info? That I can do ...

Preppy 101 (and others) have asked for more information on Little Mister.  I can not divulge it all ... not only for his privacy but because our story is long and detailed.  Here is what I can tell you ...

Little Mister suffers from (among other things) Sensory Integration.  In laymen terms that means that the information his five senses picks up from the environment is not properly processed by his brain.  It gets scrambled.  The therapists describe it as him being on the edge at all times.  The feeling you and I get when we have had too much stress or too much caffeine and we are ready to scream is the feeling he has each and every day.  This can be controlled by OT therapy, swimming, outside excersize, horse back riding, swinging and many other things.  In doing research I have learned it can be made worse with foods and other things.  I have done every single thing I have read to give him every opportunity to succeed.  And succeed he has! 

Two years of OT plus a strict regime of outside time plus diet restrictions plus 12 hours of sleep a night has made his life so much better.  However ... the anxiety remains and in my opionion has gotten worse.  Children with SI will face a situation with a negative response.  Trying new things makes him anxious ... how will it make him feel?  If you ask him to do something new he will respond in the negative and then process it and come back in a minute or so and say yes.  The bad part is the negative answer is not always a quiet, simple no ... sometimes its worse.  Of course his SpEd teacher knows him and just lets him work it out until he comes around and says yes.  Not everyone is this patient and kind.  His IQ is actually higher than my straight A student.  His anxiety along with his visual processing issues impede his performance.  If I can work through the anxiety and give him a smoother ride he will not only have much better days, he would probably be picked up for the gifted program.  He is that smart!  His photographic memory stuns me each and every day.  My point?  The ability is there ... we just have to tap into it! 

This year he has been experiencing panic attacks which have caused all sorts of problems at school.  He has now been labeled as "that kid".  "That kids" mom must act!  I would like to get the anxiety more under control.  I am not opposed to medicine but I want to make sure that is not my only route.  Medicine does not give us the tools to cope ... it simply makes the problems easier or go away.  My happy pills don't talk me off the edge they just make the edge farther away and less desirable.  See my point?

With that information ... what do you think?


  1. Wow! This sounds very much like my 3 year old son, at what age was he diagnosed?

  2. One thing that I have seen work for several types of anxiety issues is role playing. I remember one of our better school psychologists recommended this with a student I had who suffered from severe test anxiety among other things. So severe that she would fail a test! What she began doing to prepare was to simulate the testing situation at home. All of her studying had to be written on paper much like she was going to have to do on the test. It worked.

    So in trying to get him to respond appropriately to his anxiety over trying new things, etc. this might work. Basically the anxiety will still be there, but we want him to "manage" his immediate feelings then he is golden!! I don't have to tell you that so much of the success could be tied to the teacher. He is perceptive enough to feel those "unspoken" words or body language or bad vibes that a teacher could be sending. But you know more about that than any of us.

    I have a close friend who is a psychologist. She is one of the best I have seen. And she is "real" in that she has had problems with her own children. I am going to ask her in general terms what she would recommend. I am with you on the meds. If there is another way, I'm for it, too. But if there is one that works without changing who he is, that's another story. xoxo

  3. As an old SpEd teacher, I do not always think drugs are the answer. I think everything you are doing is RIGHT! I had one student that reacted in similar ways. She responded very well to tactile teaching and therapy. In fact, I believe most children learn best this way. I taught my SpEd class their ABC's by cutting out huge letters and placing them over the walls - we then took everyday objects and glued (lordy it was messy but fun) them on the corresponding letter - B was beautiful buttons -- H was horrible hair (lots of yarn went on that H). When one of my kids would have a semi anxiety attack, they could work on their ABC's and feel the objects. It helped them process their thoughts. I believe most SpEd children have higher IQ's than most would suspect. You just have to find THEIR WAY, but once you do - they are off to the races. He is very lucky to have you as his Mama. (Can't wait to start my Christmas ordering)

  4. Question: Does Little Mister have an Occupational Therapist who is not employed by his school system? My friend suggested that the OT attend the IEP meetings to individualize a plan for him with every teacher. And that this might have to be done more than once a semester. Am I telling you things you have already done? Have you found that some teachers are more cooperative than others? Because I know Mr. Lawyer could scare them as this is a law that they accommodate Little Mister.

    If I were his teacher, this is what I would do. Anytime I was getting ready to tell him to do something that is going to cause anxiety, I would talk with him ahead of time to give him time to process it before he hears it with everyone else. This is simple, but it might help him. What do you think? I have done this numerous times with children with Asperger's and/or anxiety issues.

    Let me know your thoughts. I wish I were his teacher ;-) cause he is such a sweetie I would just want to squeeze him to death ;-)

  5. Does he have a community support worker? I don't know if the sensory integration issues qualify as a developmental disability and he could be eligible for a DD worker (probably could get more hours this way and qualify for CAP funding, but also typically a paraprofessional instead of a professional so may not have as much training), but I would think you could get him an anxiety disorder diagnosis (not that you're looking for another diagnosis, but...) and get community support hours because of a mental illness.

    I used to work with a little boy with smith magenis syndrome and it caused serious sensory integration issues. He made tremendous progress having someone (me and another girl) work with him in the moment when he melted down. He required different techniques for different situations, but once we found a few categories of anxiety, it wasn't that hard to work on coping skills for them. After finding particular coping skills, trying them out, and seeing positive results, the anxiety reduced significantly and so did the tantruming, etc. He still has issues and needs help, but is so much more confident.

    Also, I think you all live in Atlanta, because I believe you're "real life" friends with Clemsongirl, so I'm not sure if this would be a possiblity for you, but we have several therapeutic camps in our area. One in particular, Victory Junction Gang Camp, has camps for children in many different circumstances. My client attended the camp for a week last summer and made TREMENDOUS progress. He developed confidence he never had and had a great time doing it. I think they have a family camp too.

    Good luck.

  6. Schedules, routines, written schedules, and written (visual) and verbal cues of what is happening next/what he needs to do. Plus a wait time/2 minute warning before he is to do the task. Basically a small pad or whiteboard for his desk and you write what is up next and give him a 2 minute wArning. Sometimes timers work but you have to find one that won't disrupt the class. Something like this may help with the negative reaction that turns positive with some time.

    From my iPhone sorry such choppy sentences:)

  7. Hi! As a new reader to your blog (which I love to read!), I felt compelled to share a thought as I am a graduate student working on my Master's in speech pathology. Have you tried using visual schedules? You sound like an amazing mom that is doing everything possible to allow your son to shine! If you haven't used these very much, it would be a great way for you to introduce new things to him in an attempt to ease the anxiety. It is a constant in his daily routine and can be as tactile as you wish to make it!

  8. I am a woman who gets relief from depression with pills. I am also a mom of a son with ADHD & sensory issues. I urge you to TRY PILLS!!! Your job is to make life easier for him. If he can get his issues under control, he can be happier & things will be easier. You don't want him to suffer from low self esteem or embarassment in front of others. I think that's what's most important for long term success, how the child sees himself.

  9. I just came about your blog and I love everyone's advice. I think that sensory integration is a commonly misunderstood diagnosis, and I think that you're doing the right thing by controlling the diet, schedule, and providing him with outlets.

    I'd also suggest asking him what works for him? Sometimes empowerment helps with anxiety.

    Anti-Anxiety meds will definately help take the edge off but they are only as good as the best coping strategy. They're not a miracle drug, by any means, and I applaud your recognition of that. They're part of a treatment plan.

    I'd also suggest that you get a full physical workup, oftentimes psychological symptoms are masking a physical symptom. Kids sometimes can't express that, so I'd do it just to be safe, I'm often at my physician's office myself!

    What does he have problems integrating? I think that would help understand his behaviors even more.

    Also, I'm a doctoral student in clinical psych, if that even means anything!



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