Advocates Quest

My sister's Keeper Continued

2008-04-14T13:21:00.000-07:00

My sister’s keeper -4/14/08
My mom asked me to watch Robyn in the bath last night. Normally it’s no big deal. But sometimes she just doesn’t want me near her. To make things easier, I jump in the shower with her. We are both girls. Robyn has to be watched because she gets into the shampoo and empties the bottles, breaks the soap into small pieces and/or pulls towels into the shower. She can be very destructive when left alone. So I put a little shampoo in and mix it up, then the conditioner and I hand her the soap and show her what to do. Well last night she wanted to get under the water and she just pushed me out of the way and I fell down. I got mad, “that’s it! I’m done!” I yelled. I got up and rinsed myself off and left the shower. I called my mom up and told her I was done and she needed to watch Robyn. My mom, sympathetic to Robyn as always, said “I am sure she didn’t mean it.” I know she didn’t mean it; I have lived with her long enough to know she didn’t mean it. But I still get mad. Who wouldn’t?
I know having a child with a disability is tough on my mom. She tries very hard to make sure we all get the same attention. But Robyn always requires more. She needs someone with her twenty four hours a day. I know my mom loves me but her number one question is always, “where’s Robyn?” And if something happens when we are supposed to be watching her. I see her struggle with her anger as well. It’s not easy. My older sisters don’t have to spend as much time with her as I do, but they do have to watch her every once and a while. My mom works two jobs and my dad works with computers. They have arranged their schedules so they can be home when Robyn gets off the bus. When there is a change in the schedule, mom scrambles to figure out who is going to take care of Robyn. Even though I am only twelve they don’t worry about me as much. I am rarely left alone, because someone is always with Robyn. However, just this year my mom and dad have run to the store or something for short periods and left me alone with Robyn. For the most part she is ok, she loves watching cartoons and will sit there for the short time periods. The only problem is when I have to tell her she needs to go to the bathroom. She will forget or just not go. So we have to remind her. I hate it when she forgets. If she doesn’t want to go she can get upset and start yelling and screaming. But if I don’t get her to go, it could be worse. That’s where I try and draw the line on being my sister’s keeper. It doesn’t always work. As usual I have to help out.

My sister's Keeper

2008-04-12T19:00:00.000-07:00

My sister’s keeper
By Kelsey Cole
I am 12 and she is 10. By, she, I mean my sister Robyn. My mom and dad had four girls and Robyn was the last. My mom says she is like 5, 6 and 7 all rolled into one. Robyn is special. I think of her that way. She is disabled. She has Autism and is cognitively delayed. My mom says she has the mental age of a 2 or 3 year old, but in the body of a 10 year old. My mom often says it is a lot easier to move a two year having a tantrum then a ten year old. Robyn and I are the closest in age and we share a bedroom together. We have been sharing for a number of years now and I have had my share of frustrating moments.
As we are getting older I have been taking on more of a role in her behavioral management, as my mom calls it. For the longest time Robyn could not speak and we all had to guess at what she wanted. Now she can speak (somewhat), at least she can request items. The problem comes when she doesn’t understand why she can’t get everything she wants. When she gets frustrated she slaps her hands together rapidly, thumbs pointing down, back and forth. She grabs her shirt and bites it. I am lucky she doesn’t bite me anymore. She screams and cries, but what she says doesn’t make any sense. Sometimes there is no calming her.
Robyn makes me laugh. Sometimes she comes up with the words out of nowhere and says them, over and over because we laughed the first time she said it. It makes me think she likes to make us happy. I think that is true. Robyn loves to laugh as well. When she sees something she thinks as funny she laughs and laughs. She often tries to share the experience by retelling it or commenting on it, but she is not really understood. We just know she found it funny.
Robyn has her little quirks as well. She likes to carry around the phonebook and flip through the pages. My mom thought she was smart by replacing the big phonebook with a littler one, easier for Robyn to carry, however the phonebook company sent a new big one. Robyn will carry it around until it is destroyed and ripped in half. Then she will take half the book and carry that around. She likes to sleep with it as well. Mom says it is better that then something else like Webster’s dictionary. At least the phonebook is free.
Robyn also has a quirk about DVDs. We all enjoy watching DVDs. The Disney musicals were always a favorite of all of ours. That is until we had to watch the 50 million times. Robyn also likes to carry her favorite DVDs around. She goes to school with her phonebook and DVD. She goes to bed with them. She used to want to carry them at stores and all, but my mom put her foot down. They stayed in the car if she wanted to go into the store. That worked pretty well. Of course then we had the problem of her leaving things in the store that she wanted and mom wouldn’t pay for. It would have been easier sometimes just the buy the dumb things she wanted, but my mom, said she can’t have everything and we couldn’t afford all the things she picked up.
People have looked at us with frowns and shaking heads. My mom hates it when people stare. So do I. I just want to leave and not look back. I sometimes think, I am only twelve, what can I do? I do however always come through for my mom. I think it is the special relationship that Robyn and I share. My older sisters are in their teenage years and they don’t spend as much time as I do with her. I know Robyn loves to laugh and if I can get her to focus on me and make her laugh we have a chance of getting out of the store within the hour. I sometimes hate to do it. Who am I kidding I hate to doing it all the time, but making farting noises in public makes Robyn laugh. People can look but it works, but not all the time, sometimes I have to resort to singing. I love to sing so that isn’t so bad. I don’t start with singing because she tries to make me stop. Not that I sing badly, but my older sisters taught her to do it. Mom wasn’t happy with them for that.
I have to say Robyn has gotten better in her behaviors since learning more words. She can request most items that she is familiar with and point or pull you to the items she can’t request. She also tries to get items that she shouldn’t have. One of the most irritating things about Robyn is, she gets into my stuff. I can’t keep anything personal in my room because she would destroy it. She has destroyed so many of my things throughout the years. I would go to bed at night and she would have taken one of my toys and broken it. I have cried over many things in the past, but I know in my heart that she didn’t mean it. It doesn’t stop me from getting upset; it allows me to forgive her quickly.
I tell my mom, all I want is my own room. My oldest sister Katelyn is going to college this year and my mom says I will have my own room when she goes. Katelyn was upset with this news, but my mom says I have been through enough and it’s about time I get a break. Mom says Robyn will also get her own room and Shannon and Katelyn will have to share. That seems fair. They get along well. They are two and half years apart and they share clothing anyway. Now it will all be in the same room. Katelyn will only be back for breaks and holidays. That’s what my mom said when they argued about moving in together.
Well that’s a start I hope to continue this tomorrow.

Supreme Court in favor of Parents

2007-10-11T20:49:00.000-07:00

WASHINGTON, DC (October 10, 2007) -- By a vote of 4-4, the Supreme Court today upheld the Second Circuit Court decision in the case of Board of Education of City of New York v. Tom F., 06-637, thereby affirming parents' statutory right to challenge a school district's Individualized Education Plan (IEP) without first “trying out” the school district's proposed placement. The New York City Department of Education had argued that even if the child's IEP is demonstrably inappropriate, a parent should not have standing to challenge their child's IEP unless the parent has first “tried out” the school district's IEP."Today the court affirmed the danger of making students try out an inappropriate school district program. Students who need early intervention do not have time to waste," said Gary Mayerson, an Autism Speaks board member and founder of law firm Mayerson & Associates. “School districts need to fulfill their statutory responsibility to create an appropriate IEP for every child with a disability or to pay for that student to attend an appropriate private school.”

These early years are what form children for the rest of their lives, Do we really want children to learn they have to fail first and be labeled as stupid before they can get help and be successful? School districts don't have to live with the internal torment of the child that cant rise above thinking of low self worth, parents do and it breaks their hearts and their pocket books to do anything to help their child succeed. I just put my child through 6 years of private schooling in a Montessori school to overcome, not the learning disability but the self esteem issues of having to fail first in the public school system. I prefer individualized learning then teaching to the masses in the hopes everyone learned the same way.

New Challenge for Advocate Mom

2007-09-10T21:55:00.000-07:00

I have been after them for two years to look into this as an option for Robyn to help her become as functionally independent as possible. They all agree at her IEP meetings that Robyn has a special affinity for music and she does respond well to it. They agreed they should incorporate more music into Robyn's daily school life, but music therapy is not something they offer. This year it was stated over and over again at Robyn's IEP meeting that she has made minimum gains. I have stressed that we need to look into alternative avenues, like music therapy. They would not budge. I now have a mission. I will get VC to put music therapy into their related services being offered.

As a COTA

2007-09-10T20:20:00.000-07:00

Too many times I have seen staff doing activities of daily living the residents should be doing themselves with supervision or assistance. I had one residence manager ask me about one of the residence losing her ability to dress herself. "She used to gather her own cloths and put them on - now she just stands there and waits to be dressed." It was not because she was physically unable to do it either. It was a great concern because all the years that it took her to learn to complete that task independently was gone. It was quicker and easier for the staff to do it. The resident had to catch a bus to get to Day Hab and she took to long and the bus was on a time schedule. Now the resident had to be taught to do it all over again. She still could do the steps but she had learned that the staff would do it for her, so why should she.

Robyn's New Adventure

2007-09-10T20:16:00.000-07:00

We just went to My Saddle Brook Farm to experiment with having Robyn take lessons. The trainer Mary was very nice and forth coming. She has had experience working with disabled children, but not in training for horseback riding. I was also forth coming, I have had no experience training for horseback riding, but I have lots of experience with children who are disabled. I expressed what I wanted Robyn to get out of it. I want Robyn to learn the vocabulary words associated with horseback riding that also carry over into everyday life: right, left. up, down, stop, go etc. I also want Robyn to understand the steps and the sequencing of the steps involved in horseback riding and to be able to physically meet the challenge of actually doing it. And of course enjoy it. She may not ever get past walking the horse, but she may one day do it with little to no assistance.

Pre Schools: What experience do they have?

2007-09-02T12:16:00.000-07:00

Special needs pre-schools are normally suggested by the school district. We placed Ben in a typical pre-schools at first because they said that they could handle a "special needs kids". And they were good but they didn't have enough hours. So we had to move him to another school. Unfortunately they were not as good. The classroom teachers were expecting too much of Ben and even the other students, they would ask his ‘positive’ role models (in front of him), “did anyone in the class scare them and if so they needed to tell the teacher now (glancing at Ben as they said this). We took him out of there immediately. Then we went to his last pre-school and even the school district was impressed (it was the most expensive one). The best choice is to pick a pre-school that already has other special needs in the school. You don't want to be their ‘TEST’ case. Traci- Sachum NY

When your child looks normal....

2007-09-02T11:04:00.000-07:00

Our daughter does not look disabled. There is no splint, no wheelchair, no facial abnormalities, or bent body parts. We are very fortunate in that respect. The only sense you get there is something wrong when you look at her is when she gets excited, She slaps her hands back and forth together or she will bite her shirt. You really get an a sense of something is wrong when she starts to talk. She has her own language. I used to try and explain to people when they looked at me for a translation. However, even I didn't understand what she is trying to say. We have made progress in understanding her and we have been grateful for that. In public we try to keep our daughters distresses down to a minimum to avoid any discomfort all the way around. However, because she doesn't look disabled and she throws a fit, people look at us as we are bad parents or she is an alien. If we ask for special consideration because waiting would lead to a fit, people look at us with disbelief. They have to see the fit first. I look at my daughter and wonder what is she thinking. I try and guess what will set her off before she goes. Its not easy. I know people will look, but I wonder can they not be so judgemental?

Family Vacation

2007-09-02T10:45:00.000-07:00

We have recently ventured out with the family for a couple of years now. We had to wait to go to public places until we thought we could handle Robyn's disabilites in public. Our first trip was to Disney World. We were nervous but hopeful. We found out through another advocate, her son had physical problems, that Disney had a pass that allowed our family to through the 'fast pass' lane with out costing more or spliting our family in half, where some had to wait on the regular lane while the others went through 'fast pass'. We were able to go through either all together or someone had to wait with Robyn then use the 'fast pass' to go on themselves. It cut down our wait time and allowed us to go at Robyn's pace. As most advocates know there is usually one pace in the family with a child with disabilty. We have accepted that and we were able to enjoy the trip with this in mind.

Our Story

2007-09-02T10:22:00.000-07:00

In 1998 our life changed forever. We thought we had it made, four beautiful daughters, nice house, two cars and a cat. The American dream. We went to work and took care of our family. Our careers were average but we were able to work it out that we could be home for our kids and raise them ourselves. We did notice that our youngest daughter, Robyn, was struggling to meet her milestones. We convinced ourselves that all babies developed differently and we just had to work a little harder than we did with the other three. Then one day, we took Robyn in for her six month check up and the doctor seemed alerted that her head was below the average growth rate and she was in fact having trouble sitting up. The doctor made me upset and was putting pressure on me to accept that Robyn was "not perfect". I left there crying. You see Robyn was beautiful. When you look at her with her blond hair and cherub face, you see a happy and normal looking baby. It was just when the doctor put the measuring tape around her head and posted it on the growth chart, she was not normal looking. The doctor eventually threatened us to get her to a neurologist 'or else'. We did. But we got rid of her as our baby's doctor.We saw the neurologist and he confirmed that Robyn was in fact developmentally delayed and micro cephalic. There is no reason for it. It just is. There was no facial or cranial problems that would give us reason to believe her life was in danger. The neurologist said she had low milination, but it was not degenerative. We were grateful that our child had no life threatening problems, but we were also devastated at the loss of a normal life for our beautiful little girl. We were bereft. We found out our perfect little girl was not 'normal'. All our plans for her and our family were not going to work. Our family suffered a loss, we were not ready for this. We never even considered it a possibility when we were planning our family. 'How could this happen? I don’t drink, smoke or do drugs. Why us?'We went through the stages of grief and depression. However, Robyn didn’t know what was going on. She was just as happy and loving as the day before we took her to the doctor that fateful day. She eventually learned to sit up, crawl and walk. Although, she walked on her toes. Toe walking, as we found out was a sign of developmental difficulties. She had difficulty focusing, playing, understanding and speaking. She still does. Our other three daughters were still young and really didn’t understand what was wrong. They loved their sister and didn’t treat her any different. As they got older they began to see the difference and also the difficulties that came with having a sibling who couldn’t talk or understand what was being said. Robyn was their sister, however, and they accepted it. We followed all the professional recommendations, speech therapy, physical therapy and occupational therapy. She went to a special preschool and enrolled in a self contained 6-1-2 class in elementary. It was becoming more obvious as the years passed that Robyn's chronological and mental age were separating, becoming further apart. It is not that difficult to have a five year old body with a two year old mind. However as the years pass and the body is now nine and mind is still two with sporadic skills, it does present some problems. Robyn has toileting issues and other hygiene issues. Robyn also has trouble understanding safety issues.

Robyns safety has always been a concern. For instatnce, Robyn loves water and almost drowned at the age of three. Robyn also has a high threshold of pain and will not cry when hurt. She has been stung by bees and not given any indication of discomfort. We have found wounds on her but no way to know how she got them. One of the hardest parts of having of having a disabled child is never being able to leave them for a minute. Robyn although disabled she still has the curiosity of a two year old, but has the ability to manipulate things of a nine year old. We have been lucky so far. She has not suffered either through her disability or her adventures. We recently has been to back to the neurologist and been told she is Autistic as well. Although friendly, she has a few other qualities that fit the autism spectrum. This does not really change our daughter or our thoughts about her. It does however open up a few more doors that would have been unavailable without the diagnosis.As for our family, we love Robyn. We accept our part in her life. Our other three daughters have been through a lot with Robyn's problems and safety issues. They have also pushed her to gain more abilities. As frustrating as it may be to make 'slow progress', we have made progress. I can only hope that we can continue to move forward. We may not know what the future holds for Robyn or our family, we can only pray that we have the ability to keep making progress.

Welcome!

2007-09-02T08:48:00.001-07:00

Just wanted to say Hi to all our advocates!