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Sensory Integration Disorder

What a difference a year makes

Feb 9th, 2013
by Zendette.
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Equine_therapyA year ago we were beginning to despair of finding anything that would help K behave like a normal first grader and stop the fits of rage that were ruining everything. I remember sitting up one night talking to her after weeks of hitting and acting out on an almost daily basis at school. She said, “Mommy, I don’t want to be like this”, in a sad, sad voice that seemed devoid of any hope. DH and I were also afraid to hope anymore. Her behavior, always a problem, had gotten steadily worse since beginning first grade. Two solid years of therapy and she only seemed more unhappy, her behavior more extreme.

Today it’s like we’ve scrubbed away a dirty film of anger and self hate to reveal an amazingly mature and empathetic eight year old. She has friends, does well in school, excels in sports and is becoming more social. I don’t really know how we managed to get from there to here, but a lot of things have changed. We “gave in” and put her on meds. That alone made a huge difference, but the anger was still there, it was just less extreme. We finally managed to end the relationship with a therapist we didn’t feel great about, and instead K is focusing her time on riding therapy. I’m not suggesting one is better than another, just that after three years of therapy with no breaks at all, perhaps the focus on a more physical therapy is what she needed.

We chose riding therapy because of the focus on animals. She’s hysterically afraid of animals. When we first went to the stables, she was completely on edge since chickens, dogs, cats and horses seemed to appear out of nowhere. I asked her if she wanted to go back to the car, but she said she wanted to “deal with the challenge”. She’s been going for more than a month now, enjoys it and is more relaxed around the animals. She still hates the chickens though.

The fear of animals goes back for as long as we can remember. I think it may be related to her first time ever seeing crowds of people walking and riding bikes, and dogs and children seeminly running in circles all around her.

When we first brought her home, we didn’t get any specific advice on integrating an orphanage child into our modern lifestyle. Today I know that both my children suffer from different effects of being denied sensory experiences. Both have issues related to sensory integration. Both dislike loud noises and crowds. When we adopted her, Karen had never been outside of the baby home grounds, and rarely left the single room that acted as both playroom, dining room and bedroom. She had never been in a car until we took her to get passport photos at age 2. She had never touched, or even seen a live animal.

We brought her back to Israel and our first full day home was sunny and warm. We made plans to meet up with another local couple who had shared our adoption journey. Both our families arrived home from Kiev on the same day. We were happy to follow their lead and meet them at the park with both our newly adopted children.

We met in a crowded Tel Aviv park full of people and animals, all moving faster than K had ever seen before. It must have overwhelmed her because after we got home she went into shock, refusing food and water, and lay on the floor with a blank look on her face. Our acupuncturist, Dr. Barak, advised me to put on a Russian language tv station so she would hear something familiar. Karen is a survivor and eventually snapped out of it. But it seems that the fear of dogs may be left over from that critical time when we exposed her to too much stimulation before she was ready for it.

Last year, when the phone rang, we always worried it was the school or an angry parent. “What did K do now?”. She still has fights with other children, after all, she’s still our strong-willed K, but today it’s always an issue of how she managed to turn the situation around, or at least to maintain self control. Adults who work with her often comment on how self aware she is for an 8 year old. She learned the hard way, but seems to have gained so much from the struggle.

The kids are alright

Nov 6th, 2012
by Zendette.
1 comment

From K’s class camping trip with dads only, to M’s cool new skills and ability to speak clearly, everything seems on track. I began taking Matan to hydrotherapy sessions, and since K’s such a mermaid in water, I asked the therapist if I could bring her too. We had a wonderful first session where K showed off her swimming skills to honest praise from the therapist. K also made it easier for Matan to loosen up, and he even jumped into the water with the therapist catching him just as his head went under. He was surprised after the first time, but went ahead and asked to do it at least twice more. This is new for him. He never lets his head go below the water. Sometimes he’s ok with it with Dudu, but only very rarely. Never with me or anyone else, let alone a therapist whom he had only just met that day.

The benefit for K is that she gets to have fun, and doesn’t feel excluded. Now that we are ramping down her care with her therapist of the last 3 years, I’ve promised her a break with “fun” therapies like swimming and shiatsu. Our insurance won’t cover occupational therapy for her, but they will cover shiatsu, so an OT recommended we try it for her sensory integration issues, especially touch, which she’s super sensitive to.

She continues to do well in school, and keeps up with her almost daily homework assignments, albeit with help from us, mostly from DH. She doesn’t trust that I am able to read and understand the instructions in Hebrew well enough!

Matan gets less real estate due to the fact that he manages to charm people so well, that even the difficulties we have with him don’t seem to stay with us beyond the immediate reaction. Each day he seems to speak using new words, new combinations and he shows original thought. We gave him his first bike with training wheels, and he got on, pedalled, and learned to brake quickly. He was happily peddaling away within 20 minutes of getting on the bike. I had expected it to take him ages to learn to pedal, let alone to brake and ride safely. He’s easily frustrated, so I wasn’t even sure he’d want to continue trying after a few initial attempts.

Matan’s doing really well, mainly due to his amazing special education pre-school. He gets so much attention, and the teacher brings in so many different types of activities. Today they found snails in the yard, collected them and watched them for awhile. Matan LOVES snails. That and rain are his favorite parts of winter.

His program is so good, that I can see him on track to start first grade on time. The only question is whether we’ll send him to a standard kindergarten next year, or continue in special education until first grade. The only worry I have about continuing in special ed is that he won’t be used to being in large groups of children crowded into a small classroom. Then again, when we adopted him he was living in a tiny room full of children, and rarely left that space, so maybe he’ll feel right at home.

The long haul

Aug 13th, 2012
by Zendette.
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Its the hellish final two weeks of summer vacation, and the kids have no where to go but home. Summer camps are all over, and it’s too hot to do much outside that doesn’t involve immersion in water.

I had planned to send them both to the pool with a babysitter for some mornings during the two weeks from hell. But now it won’t work because of Matan’s cast. He can’t go to the pool. Staying inside makes them both stir crazy.

I’ll take them to a few movies, and a play, but that hardly eats up 2 weeks. Back to the sensory integration issues, Matan’s occupational therapist told me going to the gymboree, and climbing, jumping and playing in a safe environment was excellent for him. Among other things, it’s supposed to help him learn to adjust to recognize what could be dangerous. One of his problems is that he has no sense of danger in his physical environment, and will happily jump or run very unsafely if I’m not there to stop him. Luckily, he did well in a gymboree last week, even with his broken arm. He just had to make some adjustments, which he did quite well. After 2 hours in the gymboree last week, Matan was calm and relaxed. It does seem to help with a whole array of issues, including balance, self esteem and learning to understand the limitations of his physical environment.

A gymboree is a large indoor playground, where everything is padded and it often includes slides, climbing areas, small trampolines built into the structure, and other fun things to explore.

Karen is getting a little old for a gymboree, but she can still have fun, especially if she’s there with Matan. I give them at least an hour before at least one of them starts complaining about something…ok, I’d be lucky with 20 minutes…

Yep, 40 minutes, and “I’m hungry”…..

Luna Park therapy

Aug 8th, 2012
by Zendette.
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Occupational therapists have been telling me that both kids need a lot of stimulation to help them overcome their Sensory Integration issues. Stimulation can include deep muscle massage, therapeutic “brushing”, or just satisfying their need for vestibular stimulation by playing on the swings. Both kids like extremes on the playground, and neither have ever complained that a swing went too high or too fast for them.

So I was curious how they would both react to going to the Luna Park, Tel Aviv’s one and only amusement park. It’s been around so long I remember going there when I was Matan’s age. Some of the rides have also apparently been around almost that long. We were removed from the Ferris Wheel when the breaks weren’t working properly…ummm. But the kids LOVED all the rides. I thought Matan would be afraid, and he did say he was afraid before going on the first ride. After that, he went on all rides that permitted children of his size. He became upset when he was turned away from a moderate roller coaster.

Karen was in her element. She is more careful than Matan, and I expected her to show some fear. After the first round on the Ferris Wheel, where she pretended to be scared, she began going thru the park, trying each and every scary ride that I was afraid to go on. She went on them by herself. She did some pretty rough spinning things. After about 2 hours, Matan got tired so I had to take him home and K stayed with DH.

DH just called me from the Luna Park, since he had promised to stay there until late with Karen. He called to tell me she was going on free fall rides, things even he wouldn’t go on. In the background, I heard her arguing with one of the ride operators who told her she wasn’t old enough to go on the Black Mamba roller coaster, the scariest at the park. DH forgot i was on the line, and I hear him arguing with the guy, telling him she had already been on the ride once, and that she was fine to do it again. Yes, apparently Karen sneaked onto a ride that is meant for children over 10 and adults. She loved it so much she wanted to go again. Unbelievable.

Now I’m interested to see if all this over stimulation of Karen’s sensory networks will indeed give her a sense of calm. This is one of the theories behind the Occupational Therapy exercises we’ve been given for both children. The idea is if you give them their “fill” of sensory stimulation, give them as much as they want, then they won’t need to seek it elsewhere by throwing their bodies around, jumping up and down, and basically acting out physically.

Update: they both had a very good week, so at least it didn’t hurt!

School conference, check

Mar 6th, 2012
by Zendette.
2 comments

Yesterday we had our second school conference with the admin, school psychologist, Karen’s teacher, and her school counselor. All report an improvement in her behavior for the last 2 weeks, but they reminded us that we’ve seen such short term improvements before, and while encouraging her and giving her lots of positive reinforcement, we should also be prepared for the inevitable backslide.

They also pinpointed that most problems occur during breaks and transitions between classes. Their job is to make more of an effort to follow her during these crucial periods. Her teacher also advised that she is an outstanding student, and even perhaps too much of a perfectionist. Apparently she becomes very angry when she makes a mistake or doesn’t write something nicely enough. Her handwriting is very good. She is especially good at math. The entire school team feels that K does not have a problem with ADD/ADHD. They all agreed that her acting out was due to the sensory issues and internal anger rather than any learning disorder.

Karen is thrilled at her success so far, and really wants to maintain the good behavior. She talks about it a lot, reminding us how well she’s doing. Of course we also give her a ton of positive reinforcement. I have also been spending a lot of time alone with her. We’ve been through similar before, but she’s always eventually reverted back to violence. She says that she often remembers things her therapist has told her, and it reminds her to stop herself before lashing out.

She’s now seeing her therapist twice a week, and Moshe Elbaum once a week. This, in addition to her sports activities 4 times a week. Yes, she’s a very busy little girl, but she doesn’t want to give up on any of it. I allow her to skip sports if she’s tired and doesn’t feel like it, but that rarely happens. She’s very dedicated to success.

We are really grateful that she is doing well in school. I think they have a much bigger incentive to work with her because she’s a good student. Had she been a poor student with behavior problems, they would be a lot less inclined to expend extra resources on her. Her homeroom teacher, to whom Karen has become very attached, has put in a lot of extra work and time to work with Karen. She seems very dedicated to proving that Karen can improve. It’s her first year teaching, and we’re very lucky that she sees this as a challenge rather than a problem. That’s the difference between a real teacher, and someone who is just doing their job.

and then there was Hope

Feb 27th, 2012
by Zendette.
3 comments

Somehow, things feel a little looser this week. Perhaps it’s because I took Karen to Moshe Elbaum for an evaluation. He’s treated thousands of children with sensory integration issues, as well as learning and behavioral problems. He was amazing during our initial evaluation. He totally “got” Karen, something it’s taken me years to do. Most people, even professionals, tend to assume a lot, and often get it wrong. He saw right through her, and told her straight up what he thought. He spoke to me with her present at all times and put her through some coordination exercises.

When I returned Karen to school, I mentioned to the principal that we were very late today because she had an evaluation with “a guy named Moshe Elbaum”. The principal was suitably impressed at the mention of his name, and said she didn’t realize he was back in Israel. Apparently he had been practicing in the US for almost 20 years before returning to Israel. I discovered that he is very well respected among educators in Israel, where he did his initial clinical trials.

So now we add Moshe Elbaum’s Method to our repertoire. She will of course continue with her therapist, to whom she’s become very attached. And of course Judo and tennis, twice a week each are also therapeutic for her. Next week we have a conference with the school. I think they will feel compelled to continue doing all they can, now that a well known personality in Israeli educational circles is treating our daughter. Name dropping can never be overrated.

A friend suggested I have Karen evaluated by Elbaum more than a year ago. I can’t believe it’s taken me this long to just do it. I would wallow and talk about how guilty I feel, but I don’t. I’m only sorry we didn’t get evaluated a year ago, before the harsh reality of first grade.

Blessed breathing space, kind of

Feb 15th, 2012
by Zendette.
4 comments

Kiftzuba This week the kids seem to be on an even keel. Almost a sense of normalcy even with all the work we’re doing to help K, and with her stuff at schhool going on in the background. Both kids are in the process of getting all their evaluations so we know what direction to aim for in the coming school year.

Matan is continuing with psychological and speech evaluations to present to the municipality so he can get into speech school next year. He just restarted his speech therapy after a short break. He’s really come a long way but the benefits of the speech school go beyond just speech, and should help him close the gaps in his overall understanding of the world so he’s ready to rejoin his peers in kindergarten or first grade.

We’re now halfway thru the process of finally getting a full psych work-up on K to rule out any serious issues. The school wants it, and frankly, so do we. We need some advice “from above” about whether her therapy is doing enough good or whether we should change focus somewhat. Maybe we need to direct more attention, as so many have advised, to sensory integration treatment along with her existing therapy to work on emotional issues. K’s really an excellent student, and takes her homework responsibilities seriously. Her report card was excellent, except for behavior. We have no room to complain at all. That’s why it’s so hard for all the “professionals”, from school to private therapists, to understand why her behavior is so extreme. She’s going to incredible lengths to moderate her behavior during class time, but still loses it during “down” times like breaks and those small spaces before class starts. She also has few, if any, behavioral issues during the after school sports she loves. The coaches are tough and gruff women. K clearly responds well to a caring, but very structured environment. School is often neither.

Still Crying

Feb 6th, 2012
by Zendette.
3 comments

Paralysis is my reaction to the extreme pain I see reflected on Karen’s face each day, for the last few weeks. She’s been shut out by the girls in her class. The boys are willing to play football with her, but don’t want to be friends. And now, even the “nice” teachers and school admins are sick of her anti social behavior. She has only us and home as her refuge from the real world. Even the school principal came up to Karen and DH and told them it’s time to look for a different school. Karen was deeply hurt by the rejection of an authority figure who had, up until recently, done a lot to get Karen to trust her. Now the trust is gone, and a child who has already faced the ultimate rejection, is again abandoned by someone she was expected to trust.

I originally ignored the bizarre statistics I’d heard, that up to 60% of the children in our area are on psychotropic meds to keep them functioning as automatons of the school system. I thought the number was inflated by reactionary parents. But no, I met a teacher from a kibbutz school, traditionally considered “better” schools with smaller classes. She told me about half the students are on Ritalin or it’s relatives. Those numbers are completely crazy. It’s not our kids, it’s the molds they are being forced into by the modern world. It’s making me want to live off the grid…as I ever could!

The school wants us to take some sort of drastic action. We’re not sure what, yet. Meeting the whole crew from school next week to hear the principal’s verdict. They can’t force us to medicate her, but they can make her life, and ours very unpleasant if we choose not to. We suggested they transfer her to a different first grade class, one with a more experienced, and stronger teacher. So far, they’ve refused, but it may be the only option open to them at this point. Of course they wield the ultimate weapon. Apparently someone has mentioned it to Karen, because she’s terrified they are going to suddenly switch her to a different school. I did my homework today and found out it’s not so easy, but if the principal is convinced nothing can be done to turn Karen into a pliable student, like all ordinary, domesticated students, she has declared herself willing to force us out of her school.

Our plan, as parents, is to be as supportive as possible because she really needs to be reminded regularly that she’s not inherently “bad”. Last week, at bedtime, she told me, “I was already bad even before I was born. I’m bad from before I came out of the tummy”. All I can do is keep on pointing out the kind things she does. Her therapist started a book with her, where, at the end of each day, we list the times she was able to overcome her desire to do something to hurt someone else. We also list anything especially nice she has done for others. The point is to keep her focused on the positive actions she accomplishes. She already gets enough attention for the negative ones.

Back to Sensory Integration Disorder?

Feb 2nd, 2012
by Zendette.
3 comments

Frustrated as we’ve been, everything in Karen’s profile of challenges is finally starting to come together. We are truly blessed by an intelligent and caring school psychologist. She called me today to get some background before our follow up meeting at school to determine what’s working and what’s not.

It all goes back to a series of posts I wrote about Sensory Integration Disorder. Karen is hypersensitive to noise and touch. Being packed into a small classroom with 35 other noisy first graders is bound to stress her under the best of circumstances.

The school psychologist asked me some background info, and among other things, asked if I had ever heard of Sensory Integration. I couldn’t believe she was asking me about this. It was almost a year and a half ago when I began exploring this issue. I explained that she had been through a short work up with an occupational therapist who recommended treatment. Unfortunately we weren’t able to follow up with her on the treatment recommendation because the clinic refused to treat Karen since she didn’t meet the standards of having additional delays. I considered finding a private occupational therapist, but around that time, Karen had some improvement in behavior and sensitivity to clothing so I sort of dropped the ball since Matan was swallowing up so much of time with speech and occupational therapy. We also felt pretty well covered since Karen was already under the care of a psychologist whom we trusted to help Karen deal with the emotional side of things.

So imagine my surprise when the school psychologist tells me that Karen’s Sensory Integration issues could help explain 90% of the problems at school! I need some time to digest.

Sensory Integration workup, finally!

Dec 10th, 2010
by Zendette.
6 comments

I still haven’t had adequate downtime to lie in bed reading a good book and eating ice cream. I did pick up a few new books and am so hoping one is good enough to keep me engaged while all about me is falling apart.

Good news, I have managed to get Karen two visits with Matan’s occupational therapist for diagnosis. We also have a sensory integration questionnaire to give her prior to the meetings. I feel pretty comfortable that if Karen does have sensory integration issues then we will soon be able to start treating her. It’s being done through our health insurance – a huge savings. We are already seeing a private therapist because of her specialization in treating pediatric emotional issues and Oppositional Defiant Disorder. A private OT with extensive treatment plan would be hard unless I go back to work full time. We got lucky because they are already treating Matan. They turned down our original application requesting a developmental workup for Karen earlier this year.

The head of the occupational therapy team kept reminding me that just because Karen has emotional development issues or ODD, it does not necessarily follow that they are caused by sensory integration problems. I guess this is true, but I also think that in addition to some perhaps unrelated emotional issues, she may also have extreme behavior in part due to sensory integration issues. I would really like to know for sure. Even as we begin examining this route, she has become supersensitive to clothing and nothing is comfortable for her. I remember that as a five year old I had similar issues, so it’s probably fairly normal, but she hates the seams on her socks and can’t seem to wear any socks with shoes without wigging out. We expect it to rain in the next few days, we we’ll have to find a solution to the sock issue. Underwear is the other main problem. Also, most pants unless they are very loose. She has been wearing sweats and dresses, two extremes, to school every day.

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