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sensory integration

Matan’s turn

Mar 17th, 2013
by Zendette.
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OLYMPUS DIGITAL CAMERAI’m happy with Matan’s development in his special education class. He’s speaking freely, and and while he still lacks some clarity, both in sound and precise wording, everyone can understand him when he wants to be understood. He’s very social and his teacher reports that he’s a leader much of the time. But then, he’s always social. He makes friends with new children at the playground all the time.

We’ve been so fortunate that he’s in a regular (non special ed) afterschool program. He has a wonderful teacher who gives him a lot of extra attention to ensure that he participates. She even snaps photos with her phone and sends them to me a few times a week. The other children are in kindergarten, so actually a year older than Matan. He seems to like it, and comes home exhausted. He’s in love with a sweet girl who began giving him attention when she noticed he didn’t speak much. Apparently both her parents are deaf, so she was more sensitive to him. Now he talks about her every day to tell me if she played with him today or not. Some days he’s bummed because she didn’t play with him alone. He’s very possessive!

He also started hydrotherapy again. We had a few sessions with one therapist but then winter came and it was always cold and dark. The warm water is really great for his sensory integration and since he has a fear of water similar to K’s fear of animals, getting past it and learning to swim will also be good for him. I was really impressed with the pool we took him to. It’s used exclusively for therapy purposes, and all therapy is done one-on-one. Matan really needs that level of attention when he’s in water. Today was really just an evaluation, but he loved it, and can’t wait to go back. He says he’s afraid, but he also gets really excited about going again next week.

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.
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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!

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.

Sensory integration advice from Mozambique

Nov 25th, 2010
by Zendette.
2 comments

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.

More opposition, and violence

Nov 21st, 2010
by Zendette.
6 comments

The kids are alright now, but last week we had emergencies and antibiotics for both of them! I had enough antibiotics to fill up my veggie bin in the fridge. It seems the sicker they get, the less they/I/we sleep.

I missed work last week to stay home with one, and then the other. It’s terrible to have to take days off when I haven’t even been there a month, but such is the life of a working mom. When they’re sick, our neighbor can’t babysit them because she can’t risk her own kids catching it. Teenagers are in school, so I’ve got to find a babysitter who is out of school and doesn’t have kids of her own. Once I find that rare creature, I’ll need to pay her a higher hourly than I earn!

Now they are feeling better, but the antibiotics suck. Karen’s moodiness got much worse. Got a call from one her friends’ mothers just now. She called to let me know that Karen kicked her daughter 3 times today…..because she wouldn’t share her cereal with Karen. I had specifically asked this mom to let me know if anything happened after her daughter came directly to me to tell me that Karen had punched her. Karen is asleep, so it’s too late to talk to her about it now, and if I bring it up in the morning, it means she will probably have another lousy day at school. Lousy for her can be anything from smart mouthing the teacher, to punching or kicking another child. I’ll need to talk to her about it tomorrow after I pick her up from school. Talking doesn’t help. We will sit and create “I’m sorry” gifts, but that doesn’t do much either. I can ban play dates for the week. I can take away her gymnastics class for this week. But that’s about it. What else can I do?

Oh, and if you’re wondering why a teacher didn’t call, so am I. The girl Karen kicked said that the assistant teacher who saw it told her it wasn’t a big deal, and that she is fine. I hate getting calls from the teachers, but I hate even more having to find out from someone else. It’s irresponsible of them not to call me, especially since they know Karen is in therapy for behavioral issues, the worst of which usually occur at school.

Our therapist isn’t an occupational therapist, and I’m wondering if we need another person to work with her. I’ve been reading about how carrying heavy things is good for kids with poor sensory integration. They sell weighted vests and other things like that. I can just make her carry her own backpack for a change, I guess….

Oppositional Defiant Disorder

Nov 12th, 2010
by Zendette.
4 comments

I finally have a “diagnosis” for Karen’s behavior. No doctor or psychologist has yet tagged her with it, but that is most likely because her therapist doesn’t want to treat a disorder, she wants to treat Karen – and our family, by extension. Our therapist did mention the phrase to me once, in passing, and I have since scoured the Internet for more information.

I have another parent meeting with K’s psychologist next week, and I’ve found more to add to the soup. Interesting how dealing with one child’s issues, overlaps and helps resolve things with the other.

Matan is getting occupational therapy to help him overcome some of his delays. Overall, he seems to function at about the age of a 20 month old. She gave us a questionnaire to complete in order to determine if he is suffering from sensory integration issues, ie, suffers from sensory overload. She recommended the “brushing treatment”, which we will begin next week. It consists of spending about 20 minutes, six times a day, to brush large portions of his skin and then put squeeze with moderate pressure on his major joints. This is supposed to help him moderate his responses to sensory overload.

After completing the questionnaire for our son, DH and I realized that when Karen was at his age, she had much more extreme responses to over stimulation than does Matan. After reading a lot of material, both online and in real books, I’ve come to the conclusion that much of Karen’s acting out may be attributable to Sensory Integration Disorder.

Topics to discuss with our therapist next week are whether Karen can also benefit from treatment for sensory integration disorder, such as the brushing we’ll be doing with her brother. I also want to know if there may be other solutions more appropriate for her age. My guess is that working with this therapist, and having the therapist guide is in parenting, will have the most influence, but it will take a long time. I like the brushing idea because I think she’ll enjoy the closeness of having me focus on her like that.

It seems that most institutionalized children suffer from sensory integration issues because they were exposed to so little in terms of their senses. Sure, they may have had music, but they had no physical closeness to a caring adult on a consistent basis. They formed no attachments. They had never seen tv, a movie, or even a car. They spent about 14 hours a day in bed, and the remainder, in a cold environment with few toys, and certainly nothing stimulating and exciting. Suddenly they find themselves in a loud and colorful world, full of motion, new creatures and people speaking a strange language. It sounds like science fiction, but when we first brought them home, both children were like aliens in a new world.

Every child responds differently. Karen went into shock after her first day out in a park full of people, dogs, bicycles, skateboarders and noisiness. She spent the next 48 hours staring listlessly, lying on the cold floor tiles and refused to eat or drink. We managed to help her pull out of it, but she continued reacting to loud events and new people and places. Now she’s a big girl, and thinks she can deal with anything. I wish she could, but she isn’t, and can’t.

A plethora of diagnoses, but few real ways to treat, except to follow a long road to creating a safe and calm situation for both children.