A Safe Place

A-M, our Early Intervention (EI) coordinator, emailed me today saying she had shown my videos I sent to her (four different ones of Ace tantruming, ranging from seven months old to last week) to some colleagues and that she had someone who wanted to meet with me.  This turned out to be B, who is a Behavioral Specialist.

B called and said she was going out of town tomorrow, and could meet with me right away at our house if I was available.  Not wanting to have to wait another week, I said OK and had 1/2 hour to get cleaned up and ready.  K (the nanny) was here, so that was a great help — she got the house straightened and watched the boys while I wrapped up some work stuff and then got showered.

B arrived and we talked about Ace’s behavior, my observations, and my concerns.  She said that the videos were great and she wished all of her parents would make such videos, because it really allowed her to see what we are seeing and dealing with and she was better able to help us.

She had my email I had sent to A-M, which was mostly my last blog entry which described all that’s been going on, and she had highlighted parts she thought were important.  The first thing she said was that I have great instincts and that I was making important observations, such as how Ace refuses to make eye contact and pulls away very hard when he’s in a tantrum.  She also said my instincts were good when I told her were were starting to do brushing and compressions with Ace (I’ll explain those in a bit), and also going to go gluten-free to try to better help him.

Some of the things she said to me were so obvious, it was almost painful to hear!  She said when he’s tantruming, my instinct is to try to comfort, nuture and help him (of course!).  However, he is clearly telling me that is NOT what he wants by hitting, kicking, pulling away and refusing to look at me.  And then she put it this way: “I am 54 years old, and when I am mad at someone, I pace.  And if they come to me and try to put their hand on my shoulder, I am going to swat their hand away and keep pacing, and I certainly don’t want to look at them.  Then I’ll curl up on the couch, have a cry, blow my nose and be done with it.”

It’s so true!  Sometimes, when I am angry — especially angry at someone — I want to be left alone.  Ace doesn’t want me holding him, cuddling him or otherwise interfering…  he wants to have a fit and get it out and then be done with it.  Our interference and attempts to soothe him are just making him angrier and therefore extending the length of the tantrum.  Talk about a “duh” moment!

Her solution is simple.  We will get a bean bag or other soft, safe item for Ace to have as his place to tantrum.  If he starts melting down, we take him to his safe place, let him know it’s ok to have a fit, and sit near him — but not interfere with what he needs to do — so he knows we are there for him.  If he tries to leave his spot, we will pick him up and let him know he needs to be in his safe place and otherwise leave him be until he is ready for us.  She said a dog bed (unused, of course) can be a perfect safe spot for tantrums.

Then there has been issues with his eating where he will just throw everything, spit it out, shake his head no or scream if you try to feed him something, or he signs — or yells — “Done!”  Again, such a simple answer.  If he says he’s done, or otherwise indicates he has no intention of eating, then he’s done.  And he can try again at the next mealtime or snack time, but not before then.  He will eat when he is hungry.  Makes sense, and I’ve done that with Calista…  no idea why it didn’t dawn on me with Ace.

B specializes in treating the behavior (in this case, primarily the tantrums), but not the cause.  So we still don’t know what is really at the root of all of this, but being able to deal with it in the meantime is going to be such a help.

As for getting to the root of things, as I said previously, we are going to go gluten-free.  We’ll all do it, as it will be easier than trying to do it just for Ace.  Gluten has been linked to intestinal as well as behavioral issues — both of which Ace is suffering from.  Calista and I both have intestinal issues, so it may help us as well (and hey, if it improves my moods along they way, score for me!), and Nate and Skip will come along for the ride because they are good sports.  ;)

In addition, we’re going to do brushing and joint compressions.  Both are techniques used for kids with Sensory Processing Disorders (SPD) and are supposed to help give their bodies extra sensory input which, over time, will help their brains better recognize and organize what they are sensing and hopefully “re-wire” them to be more normal in their sensory processing.

The brushing is simply a sequence of brushing strokes done on the skin with a soft surgical brush and gentle pressure.  You do the outside of the arm, the plam of the hand, the outside of the other arm, the palm of the other hand, the back, the outside of the leg, the sole of the foot, the outside of the other leg, and the sole of the other foot.  Ace is really starting to enjoy it, as he runs and sits on my lap when he sees me with the brush, and will stick his arms out for me.  And then he grabs at his feet, as he loves when I do his feet!  What is even cuter is that Nate wants in on the action, but he’s so very ticklish that as soon as I start to brush him, he turns into a rolling ball of uncontrollable giggles.  :)

The second part are the joint compressions, which again are done in a special sequence.  The joints are responsible for our proprioception (I like to throw in big words as it makes me look smart!), which is the sense of where our bodies are in space.  If a person has SPD, then they may be less (or un-) able to perceive this spacial awareness and it can cause problems such as clumsiness, bumping into things, falling down, etc.  It really could be one of Ace’s sensory issues, as A-M once described him as “floaty” when he walks, and he really is.  he also falls and bumps into stuff all of the time!  Again, like brushing, joint compressions are to give extra sensory input to the body so it starts to recognize said input and process it more normally.  Also, like brushing, there is no harm in doing this with Ace if he does NOT have SPD.

We do joint compressions in series of ten, so I start with his head, and just do quick, gentle (but firm), pulsing presses on the top of his head, like I am trying to push him straight down.  The I do his shoulders, then on one arm I do his elbow, then his wrist, repeat for the other arm, then do one hip and then knee, followed by the other hip and then knee.

Between the brushing and the joint compressions, it take all of about 2 minutes to complete, and he doesn’t mind it.  He even giggles when I press on his head.  We are doing these repetitions every two hours to start, and then after a while, you can start to do them less frequently.

Hopefully, all of these things will start to make a difference in the frequency and the duration of his tantrums.

All in all, it was a good day, meeting with B and feeling like I have regained a little control it what was quickly spiraling out of control.  We also got some general behavioral tips and techniques for all of the kids… kind of like our own Super Nanny session (without the big butt or British accent, of course).

The bummer part of the day was that I finally got a call from the Occupational Therapist (OT) that we have been on a wait list for since October (8 months now!) and they could start to see Ace on Thursdays.  Except insurance won’t cover it as they are not in the network, so it would be $70 per visit, and we just don’t have that right now.  I hate, hate, HATE to have to turn down services for him because of the cost, but what else can you do?  The first one we saw is in network, but because of our lovely $1,250 individual deductible, we’d have to pay out of pocket until that was met, and we just don’t have the funds for it.  I did email A-M to see what she might be able to help us find in ways of services, though, so maybe something else will come up that won’t cost a small fortune.  Either way, having B come today (and I will be meeting with her again in mid-May to review progress and further evaluate) made me feel like we’re gettings somewhere.  She reassureed me that I should be following my instincts and that my instincts are spot-on, and though she can’t find the root of the problem, she’s given us the tools to deal with them.  And perhaps the removal gluten from our diets in combination with the brushing and joint compressions will really turn things around.

Time will tell.

6 Replies to “A Safe Place”

  1. Good luck with all that Sommer! Have you ever done gluten free? I have been gluten free since 2002. Its not so easy. And many with behavior issues find the gluten free and casein free work better. That is much more difficult. Luckily there are a lot of resources on the web to figure it all out. Bread substitutes are the hardest and are just not the same. I rarely have bread anymore because it is just not worth the trouble. And eating out is also a rare thing. FYI – you may want to be tested for Celiac (which is the autoimmune disease that causes gluten intolerance). But you can only be tested while eating gluten. I made that mistake. I wanted to “try” it. It worked so great that I was never able to get back on it and get tested. I was tested anyway and had a gastro that didn’t know much about Celiac. He said that you can be tested without eating gluten. My results came out negative but found out later from a Celiac Speciallist that he didnt know what he was talking about. I described the tests and what the gastro had told me and the pathology report. She said that it was all done wrong and the only way to get a true diagnosis is to eat gluten for 2-3 months and retest. I cant even have a few crumbs without getting sick. Since it is just me I am okay with no diagnosis.

    Good luck. If you need any help with the gluten free go ahead and email me.

  2. Sounds awesome. I am so glad you met with someone and they validated your concerns. That’s over 50% of the battle, don’t you agree? I agree with the specialist – you have amazing mommy instincts. :hug: Hope it all goes well.

  3. Good luck! It sounds like progress! We eliminated gluten in the fall for a trial, and it really wasn’t that overwhelming once we got used to it. There’s still tons of delicious – and even inexpensive – stuff available.

  4. Is there a grant anywhere or a study going that would pay for the appointments? Money is awful stuff. I hate that it is keeping Ace from something that might help.

    I’m gluten-free. If you need or want to chat about it, just let me know.

    Thank goodness you are Ace’s mom. He’s a very lucky little guy.

  5. Wow Sommer, Ace really scored when he got you! You’re so on top of this. I’m all for finding the cause of behavior because I think once you do you’ve got at least 50% of the solution. The gluten-free possibility is definately worth exploring. Something isn’t right in his little world. You’re getting closer and closer to finding both the cause and the treatment.

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