New Challenge for Advocate Mom

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

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

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?

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....

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

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

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!

Just wanted to say Hi to all our advocates!