Sensory integration advice from Mozambique

Two days ago, I saw a new reader check in from Mozambique. Unlike the 10 second visits of various bots across the world, it appeared that the person spent a bit of time reading my latest posts.

Surprise, it was a friend of mine travelling on business there, and she pinged me later on Skype. Turns out, her son had behavior and symptoms similar to Karen’s. In fact, she sent me a comment almost a year ago, after reading about Karen on this blog, asking me to get in touch since she was familiar with this type of behavior, and “it could be a simple neurological issue, call me to talk”. I’m embarrassed to say, but at that time I was so overwhelmed with immediate issues that I didn’t contact her. But now, once I’ve reached my own conclusions and posted about sensory integration issues, she reminded me, again, from Mozambique, that we need to talk.

Slowly, and if you repeat something to me enough times, I may actually listen. It turns out that my friend in Mozambique wanted to discuss sensory integration with me almost a year ago! Had I only had ears to hear, I may have saved us a year of worry and distress, or at least we could have started an appropriate therapy earlier. The good news, according to my friend, is that it isn’t too late, in fact it never is, and we can begin addressing Karen’s sensory integrate immediately.

Today I met with Matan’s occupational therapist, and she said that she thinks discussing brushing for Matan was premature. After reviewing his complete profile, she thinks he needs more specific sensory stimulation, especially oral – not so much desensitizing him with regular brushing. She went on to say that from what I’ve told her of Karen, brushing may actually be more effective for her, but of course, I would need an OT to do a full work up.

So now I’ve gotten some leads on OTs for Karen, and her therapist’s agreement to pursue OT. The therapist admitted that her focus was dealing with emotions and that she lacked any expertise in OT. She wasn’t even able to recommend anyone. Originally, she had asked us to desist from using other therapists/therapies with Karen, but after I discussed the whole OT and sensory integration issue, and she admitted that she had no real knowledge of it, so she agreed for us to work with someone else on OT. I will make sure to connect the OT we select with our therapist so that we can pull together the information. But in the end, only a parent can really integrate all the different therapies and advice.

2 responses to “Sensory integration advice from Mozambique

  1. First off I love this picture of Karen. She looks so joyful, it’s really beautiful. Also I must say I am very impressed with the amount of tomatoes and cucumbers on her plate. I couldn’t get Maya to touch a tomato or cucumber to save her life!

    I think, after reading this post and your sister Tamar’s comments on your last post (she always makes a lot of sense) that it is such a chore to navigate between all the different therapies and doctors. I think I have been spoiled that way since at least up until this school year, Maya’s former school took a comprehensive approach and although there were different therapies and therapists, there was one person who brought it all together and at least twice a year the different therapists sat together and gave us their reports but also an overall approach. We are missing that in her new school and I can really tell the difference. I am afraid though that what I had previously was very much the exception and not the rule and Leo and I have come to the conclusion that we will need to play that role from now on.

    I think your sister brought up an interesting point about consequences. It may be possible that Karen doesn’t understand them. Autistic kids often have that too and I often find that Maya doesn’t always get consequences either. I also think the thing about consequences for kids who don’t get them, is that it has to take place right when the action takes place. If you wait even a half an hour the moment is gone. So your story about Karen kicking a kid in school and your hearing about it a few days later and then thinking about punishing her in some way I think will not teach her anything as the moment for her is gone. I think that you can and should in those instances still talk to your child about it and try to find out why they behaved this way, but I agree with Tamar taking away something like gymnastics may not achieve anything, she likely won’t get why she is being punished and it will fuel her anger (and perhaps bad behavior) and agree physical activity is good, it helps them work out their energy and makes them feel good about themselves.

    We were told and could see also that Maya doesn’t understand consequences (this is a typical aspect of kids on the spectrum since they have such difficulty reading social cues) and we were advised to to more consequential with her, but in very small ways and to try and incorporate that approach into our parenting. Things like if you want your child to brush her teeth and she wants to watch cartoons, then make watching cartoons contingent on brushing teeth. This approach was suggested to us not only for consequences but also we had a hard time with setting daily routines with her. It took about a year of doing this but I must say that it has been very successful for us (and by success I mean that 70% of the time she responds well to this). There are times though when I still see that she doesn’t recognize the consequences of her actions, but there are also times that she does and even a few miraculous instances when she has stopped herself from doing something she knows is not okay because she thinks about the consequences of it. And I can’t say this enough, how important it is to really go over the top and praise positive behavior. Even the smallest positive action should be noticed and made a fuss over.

  2. Dana, I totally agree with you about consequences. I didn’t end up giving Karen any punishment, I just talked to her, and again explained that treating friends like that means that they won’t invite her over. Even if they accept her apologies, their parents may not. She does seem to understand this.

    Evelyn’s comment in the last post also dealt with teaching cause and effect. Karen does understand, but doesn’t always have the ability to think clearly about the results of her actions when she is angry.

    We also try to focus on immediate awards. Eating all her dinner means desert. She does love cucumbers, and the reason she’s looking so pleased in the photo is that she prepared the meal herself. I only sliced the cukes. She even cut her sandwich in half with a blunt knife. She doesn’t really like tomatoes, but occasionally eats 1-2 cherry tomatoes so I try to include them as often as possible, on the off chance she’ll actually eat them.

    We do go over the top on praising good stuff. Sometimes I think she feels we are even being condescending. I try to make it sound as grown up as possible, and whenever she has a good day, I make sure to tell Abba, in her presence, as soon as he comes home. We also make tv contingent on behavior, or rather, if she begins being abusive to me or her brother, she knows that the tv is the first thing to go for that evening. It goes immediately.

    Overall, Karen seems to be doing much better lately. We have always had these ups and downs with her. She has a lot of fun events coming up in the next week – Hanukka, 2 b-day parties, 2 theater plays and a gymnastics performance. I’ll have a tougher time than Karen navigating it all!

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