2012年6月10日 星期日

Parenting a Child with Sensory Integration Disorder

After suffering another incredibly stressful morning trying to get my 5 ½ year old son dressed, I've come to the conclusion that there must be other families who go through the same frustration every morning. Most just wouldn't believe that we have it different than anyone else who has young kids. When I'm talking to someone about Jeremy, my stress shows but the explanation is too long so I don't usually elaborate. Their usual answer is "sounds like a typical 5 year old". I guess I've grown used to that. What is harder is to hear from other people who are trying to be helpful that we have a "discipline problem." They offer their typical advice of how to reign a child in and get them to behave.

The fact of the matter is, is that he is NOT a typical 5 year old! Oh, Jeremy loves to play instead of work, throw rocks and finds an empty box utterly fascinating, but the day to day events of our lives, the usually mundane things, are stressful and incredibly different.

This morning was supposed to be a lot of fun. We all woke up early to take a trip to Miami to see my husband's family. It's a 3 day weekend so we wanted to get an early start on Saturday morning so we could enjoy the afternoon in Miami. My husband got up and made coffee, I wrapped about 6 gifts that we're bringing and Jeremy started pulling out clothes and toys he wanted to bring.

I encouraged him to bring the clothes and toys into his room but instead more and more toys got dragged into our living room. When it was time to sit down and eat his breakfast, his favorite of 'waffles and cream', the battle started. Normally, a good tactic is to put a clock in front of him so he can see how much time he has. Today we didn't do that because we were not thinking about the exact moment we had to leave like we do every day for school. That was a BAD CHOICE on my part. I should have showed him the exact time he needed to have eaten and gotten dressed by. Then we should have marched out the door. Unfortunately, we had to pack our suitcases and pack the car.

When Jeremy got to the table ate a few strawberries and milk and got up. My insistence of him sitting and eating finally got ugly after about 15 minutes. While I was running around trying to get everyone ready to go out of town; I continued to put him back in his seat and demand that he eat. I sat with him for about 5 minutes and he didn't eat. I told him he could get a star for his chart if he ate, and got dressed. He started whining and crying so I took a star away from his chart that we've created. On one trip to the bedroom he started playing with a tractor. When I found him again ( I was now taking a shower) he wanted to bring the tractor to the table. I told him NO and to get back to eat. He was screaming and crying because now he wanted the tractor and then he said that "you are the only mommy in the world who is mean to me every day". That is when I told him that if he said that one more time he would get his mouth washed out with soap. (This works wonders for those awful things that kids tend to say sometimes but If I could live without ever doing anything drastic like this, I would!!!)

That stopped the complaining about how "mean" I am but the whining continued. I had to finish feeding him myself in between his tears. He finally finished eating after about 45 minutes. I had turned off the TV by this time of course. I've learned that having the TV on or light music can easily overwhelm Jeremy.

Next, getting him dressed was no easy feat. The first shirt I put on didn't feel comfortable. This was a brand new pre washed long sleeve t-shirt from Osh Kosh. It's darling, but unfortunately, new clothes rarely stay on my son. He prefers old and soft. Many of his very favorite clothes and shoes have spots and tears, but they are the only ones that I can get him to stay in. This morning was no different. I put on Gap underwear, Osh Kosh Jeans and the Osh Kosh t-shirt. After he was completely dressed, he started screaming and wailing about the shirt being too small and the pants being too big. So, off the clothes came! And it wasn't just a calm, "mommy I'm taking off these clothes", it was a screaming crying whining fit accompanied by throwing his clothes across the room which landed on my husband's face as he was walking across the room. At least today he didn't RUN when it was time to get him dressed. That is the typical scenario. He races across the room when it's time to take off his pajamas or time to get changed any time. I can't figure out why! I don't know if that is his body having an automatic reaction to change, or if it's a behavior issue. But it's something that we want to work on in occupational therapy.

Because I already know the drill, that nothing I can say or do will make him keep clothes on when he doesn't want to wear something, I went to the drawer and brought out the old favorites. The yellow long sleeve t-shirt with the #63 and the army looking pants that are soft and comfy. If you see Jeremy out of his school uniform, this is more than likely the outfit he'll be in.

I think of all of the hundreds of dollars that I've wasted by buying clothes that don't quite feel right. I think of the dozens of pairs of shoes that he has kicked and screamed about. I have thrown out piles of socks that just didn't have the seam in the right place. Getting Jeremy dressed to go anywhere, is a struggle nearly every single day.

Recently, the school had a second hand sale on uniforms. I felt like I struck gold by finding the oldest shirts in the school. To me, that means, the SOFTEST and that is perfect for my kid! He is 5 years old, and he wants to wear size 12 shirts. They are big and don't cling to him. Also, discovering the GAP undershirts has been a miracle in our lives. My friend Diane has a red head boy (I believe red heads are more sensitive) and they recommended the GAP undershirts.

I remember trying to get Jeremy dressed at age 2 was no different than now. He went to the Montessori school and because it was pre-school, they weren't particular on the time we arrived. Many, many mornings Jeremy would fight and scream when I had to get him dressed. He would have been perfectly happy staying at home watching TV all day. He would be completely happy just doing that every day of his life. But, fortunately for him, he has two incredibly active parents who rarely ever sit around and watch TV. We have our traditional "Friday night movie night" but we don't watch TV much during the week.

Jeremy does get to go to After Care at school if he's had good behavior the day before. There, they run around the fields, play ball, climb on the jungle gym, have snacks and play with their friends. He loves it! I find that it's the best place for him since he races the kids and exerts more energy there than anywhere else. The hardest part is when it's time to go. What else? He runs away! My mom has found it completely embarrassing because he doesn't pay attention when it's time to come. He just continues playing and then runs to the other side of the field where he can't even hear us yell for him.

By reading books like "The Out of Sync Child" and talking with other mom's I've found a few things that work in this situation. First of all, when you get there, allow the child 5 minutes or 10 minutes to play. Tell him/her that he has 5 minutes and then it's time to go. For Jeremy, he then gets time to transition to the next activity. And the expectation is set. Our new rule is that he is able to achieve a star for his chart at this point. If he comes immediately after the 5 minutes is up, he can get a star for that which when added up every day can determine whether or not he gets to go to after care the next day. He needs to get 5 stars a day - for getting out of bed quickly, for eating and taking his plate to the sink, for making his bed, for getting dressed (almost) by himself, brushing his teeth and hair, etc. He has the chance to earn 3 stars in the morning. Several of the above list is combined into one section for instance: putting dishes in sink and making bed = one star.

The chart system is working for us pretty well. He gets stars taken away for negative attitudes or whining. One day he ripped all of the bad and the good extra stars down. He didn't realize he also ripped the good ones down. Jeremy can earn EXTRA stars for having excellent behavior like the day he had such a great attitude one morning. I was so pleased and so proud of him that he got to go to After Care that day even though he didn't have enough stars the day before. The extra stars can accumulate to 20 and then he gets to go to Toys R Us to buy a toy. So far, he has only a couple of extra stars for good behavior.. and believe me.. I'm looking!

It's hard for Jeremy's self esteem to have these problems. He's gotten in trouble nearly every single day at school. He's come home many times saying, "I'm a bad kid, I'm a bad kid", which really rips out my heart! The system of putting their "apple or acorn" in the yellow, or red basket brings a reputation of "bad behavior". Jeremy has also had his apple on the teachers' desk many times. If he gets bad behavior like this, they take him out of recess. They'll take him out for 5-10 minutes or even the whole time! When I learned this, I freaked out! Jeremy NEEDS activity in order for his brain to FUNCTION correctly. By taking him out of free time outside, they're just hurting the situation. I caused a stink about that at the school and I think they've made some adjustments. The school counselor is now involved and helping to guide the teachers in working with Jeremy. It's truly been a collaborative effort.

Jeremy has also been slow to finish his work. We had him professionally evaluated and it was also discovered that he has auditory processing disorder. This doesn't allow him to process more than one thing at a time. He can hear well, but he can't focus on more than one thing at a time. It doesn't allow him to hear people calling his name if he is immersed in another activity. Next summer, he'll be doing a 10 day intensive program for auditory processing which includes 2 hours in the morning and 3 hours in the afternoon. He'll be listening to headphones which somehow reprogram his brain to hear more than one thing at a time. I am really looking forward to this time to see if we can correct some of the behavior that he has.

We've found a few things that can work for Jeremy in regards to his behavior at school. First of all, Jeremy is OFF of all sugar. He used to have waffles with syrup every morning and all of the sugar gave him too much energy and he was bouncing off the walls! We finally realized that sugar has adverse effects so he now gets little if any sugar in the morning. We even prefer milk over orange juice since fruit has sugar in it.

Next, Jeremy has to take time to exercise in the morning. We put a mini trampoline in our living room and he bounces a few hundred times in the morning before school. If we have time, my husband will take him out to ride his bike before school or run around the field and play Frisbee. On mornings that he doesn't get to exercise, he seems to be more talkative and figity at school.

I've had to explained to Jeremy that sugar is "poison" to his brain. It makes him react in such a negative way where he throws fits and disobeys. I seem to automatically know when he's had sugar! When he acts like this and I know he's not overtired, I automatically ask if he's had sugar!? Usually, the answer is yes and so then I require him to start bouncing on the trampoline to get the energy out.

Jeremy might also have ADHD, which is a possibility since he was a preemie and upwards of 40% of preemies have ADHD. I went to one doctor and within about 1 minute he was telling me that Jeremy had ADHD and would require medicine! That appalled my husband and I was quite put off myself. Even if Jeremy does have ADHD, we're not going to put him on medication without trying to find every other way to manage it first. Besides occupational therapy, we've heard of other therapies that families have used and have had great success. Besides monitoring diet, they've used biofeedback and also some sort of testing of the electrodes in the body to eliminate toxins. I may have those details wrong, but we haven't gone down that road yet. Right now, Jeremy is in Tae Kwan Do 2 times a week. There, they teach self discipline, self esteem, leadership and focus. These are all qualities that I want for Jeremy.

If anyone could have told us where we'd end up even 6 months after we started down this path, I wouldn't have been able to handle it all at once. When we first discovered it, people came out of the woodwork to tell us their discoveries and what they went through. A friend from high school confided in me about her family situation and how they dealt with it. It was hard on her husband to imagine that their kid, coming from two "over achiever " parents, would have developmental problems. I could relate to that of course, but when she started telling me that her child couldn't stand loud noises and would cover his ears and cry and scream, I couldn't relate to THAT. She also told me that it'd be best for Jeremy to repeat kindergarten and at the time, it was a thought that I couldn't bear. We've since determined that Jeremy will repeat kindergarten next year. Coming to that conclusion took a lot of time and was a result of visiting numerous pre schools, talking with our own principal, vice principal, other parents, his teacher and the counselor. It was our principal who encouraged us not to do anything rash. I trusted her and I kept him in school and made the decision early on to repeat next year.

Other parents of kids of SID children had other stories. One parent's child had low motor skills and didn't want to swing or play with other kids. That was completely OPPOSITE of Jeremy. I did meet one mom at a workshop for parents with kids of SID who is very similar to Jeremy. He's a "crasher" and needs just as much physical stimulation as Jeremy. We laugh over the fact that we TELL our kids to jump on the couch... instead of getting off of them. So, little by little, with more reading and more talking, I found we all had one thing in common: MAJOR FRUSTRATION!

My friend from high school also had some of the same issues I was facing at home. My husband, who is a complete overachiever, couldn't deal with the fact that it was recommended that Jeremy go on medication. He absolutely REFUSED to even consider the possibility and so this would create lots of tension. My resolve was to find a solution, whatever that was. I was dealing with the teachers and with Jeremy every day, not just in the morning or at bed time. When I took Jeremy to school, the stress stopped for my husband, but not for me or his teachers. After speaking with numerous wives, I've discovered that the husbands don't believe it, or WANT to believe it. It appears that because men feel that they must be strong in every situation and must handle many obstacles in life, and that having a son that is facing problems is just too much to bear. Most of the dads of the boys with SID are in denial at first. The wives tend to have to deal with finding out what the issues are all by themselves by researching, talking and finding solutions. Many of the husbands fight the wives to the end until the wife finally convinces her mate to "just speak with an expert". In one case I know, the father uses the excuse, "he's just like I was" so he assumes it is okay. Meanwhile, everyone including his wife is going crazy having to deal with his child. My friend is of the mindset that if there IS help available, then she's going to get it! In reality, many of these men are right, because the kid IS just like them... and if there would have been help for their own mothers way back when, then the moms more than likely would have taken it instead of suffering through it and of course it would have made everything easier on the child. They could have learned tactics that would have helped them manage their actions, their bodies and their behavior.

My husband finally came around when he was able to speak with the Occupational Therapist where we got Jeremy evaluated. They promised to do whatever possible to work with Jeremy to correct many of these issues. The whole topic of using medication to help Jeremy hasn't come around for a while, but I know that my husband will be open to it if we have to do it. He's had to deal with Jeremy while I've been out of town and it nearly put him over the edge.

We're really just starting on this journey to getting the help we need. I've discovered many successes through trial and error. I've found that having a chart that rewards Jeremy for his chores and responsibilities for the day motivates him better than punishment. Tae Kwan Do has been fantastic to improve his self esteem. Talking with the teacher on an almost daily basis alerting her with new research I've found or discoveries that have happened has really helped. Daily massages on his feet, legs, back and hands are helping the stimulation of his skin so he doesn't freak out quite as bad when putting on socks and shoes. Teaching him to breathe himself through frustrations is an ongoing process and educating him about what to feed his body to it works correctly has helped me just as much!

Had I known what it would take to parent a child with Sensory Integration Disorder, then I would have said that I didn't have what it took. And I probably would have been right. My stress level has been through the roof ever since I had Jeremy but in reality finding out that he had something that was actually diagnosed gave me the power back! I knew that if I educated myself, our situation would improve and indeed it has.

I'm now able to understand that I need to implement complete structure in order for him to function at his best. That structure does include plenty of free or down time, but when it's time to do something or go some where, I put on my "drill sergeant" hat to get him to perform. It goes against my nature to be that firm, but I've learned that in order for our family to function, then I have to do what I have to do.

Please feel free to share your stories with me or to reach out for support. Perhaps if several of us can reach out to others to help, then others will be able to educate their spouses, their teachers and their friends.

Mary Gardner is an executive communications consultant and lifestyle coach. She is the mommy of Jeremy, a precious and active 5 year old boy who has Sensory Integration issues. Mary can be reached at mary@marygardner.com

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