I have asked a handful of parents I know to share their stories. The first parent has a middle school child with intellectual disabilities and cerebral palsy. She is someone I have known for many years, before her son was born. Through the years I know there have been countless doctor appointments to even diagnose her son. He nearly qualified for a few different diagnoses, but not quite. This alone is frustrating for parents. Knowing what a child is facing can allow parents to attack symptoms and treatment with full force, but until that point the unknowns are daily struggles. Below is a small portion of this mom's heart for her child. ________________________ I am thankful for the culture that we live in where the schools are required to provide my child an appropriate education where I have heard that in many other cultures a special needs child may be considered a drain on society and/or the resources aren’t there to help the child. I know that most everyone my son has had on his team cares about him and that they are limited by the resources they’re given. But I have enough of a fight without feeling like I need to fight my son’s team as well. I have felt that there wasn’t a respect of my input. When I told my son’s team that he doesn’t understand a standard education, they didn’t really take into account my observations of my son’s ability to learn and so the next two years were not at all ideal for meeting his needs. Only after the third year, did his team fully accept what I said and only then did he have a good educational year... all that time lost where he didn’t hardly understand anything that was going on and only because they had to see for themselves that I knew what I was talking about. I understand both sides of the coin: I understand mine most of all, but I do know that educational teams fight a hard battle as well. They have over-demanding parents who don’t respect them and over-advocate for their child as if without any sense of the juggling act that they face with the resources they have verses the needs of their students. And there is the reverse where there is no parental support and little involvement by the family in their child’s education. They have a hard job; I’ve seen people on my son’s team yelled at and hit by their pupils and unappreciated by the parents while all they do is done under a microscope. In an ideal world, they would be respected and I would be respected. There are no easy answers because humans on both sides are imperfect people trying to do their best. I think we should commit to respecting each other and helping to make both sides’ job easier. I should be listened to and my input respected while I should be kind to my son’s team and give them the benefit of the doubt that they are trying to meet the needs of my child. If there were the mutual respect and trust, it could make this hard job of loving and providing for my special needs child just a little easier. __________________________
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As a part of my education I was given an assignment to learn about mental institutions from decades ago. One of the most famous in the United States was Willowbrook. It became famous because in 1972 a young Geraldo Rivera visited Willowbrook to do an investigative report. What he found was appalling. People with physical and intellectual disabilities were naked, some half-clothed, eating mush without utensils, feces everywhere. There is a longer documentary but here is a short trailer to give you an idea of what he saw. After watching this you might think what in the world was going on there? Most of the mental health facilities began with every good intention. Willowbrook, the video states, began with a caretaker/ patient ratio of 1:6 but when funding was cut the ratio exceeded 1:30 and beyond. Bathing, feeding, providing social opportunities,learning, etc. would never happen with that type of staffing. Abuses began to occur and because parents were encouraged not to come back to see their children many parents never knew how they were being treated. During the 1980's many residents at institutions were deinstitutionalized and integrated back into society through group homes or placed with family members. Below is a resident who lived at Willowbrook. She uses a board to express her thoughts and ideas so be patient as it sounds very mechanical. She states that the food was so bad she paid a worker to buy her and a friend food. Her verbal skills do not make her any less worthy of a good life, but in the time of mental health institutions if you could not speak for yourself you were assumed "dumb". This woman is smart and expressive. I think that even though we have come leaps and bounds since the 1970's, we, as educators, can still catch ourselves not seeing the potential or talents in a person with disabilities because they speak too slowly or not at all. My passion for giving choices and a strong voice to those with disabilities increases every day. My son has high functioning autism, formerly Aspergers. I did not begin my program in special education because of my son, but I did think it would help me be a better mom to him. Today I was helping him with his 6th grade math. I was trying to explain only adding like variables and I said you cannot add 2x and 2b, it's like apples and oranges. He turned and looked at me and said, "What?" It wasn't that he didn't hear me, he did not understand the idiom. Many children on the autism spectrum have difficulty with idioms. They are fun and useful to get a point across, but it could mean absolutely nothing to a student wit autism. I am guessing my son literally pictured fruit in his mind and wondered what that had to do with math. Out of curiosity I asked him what the meaning of "curiosity killed the cat" was and he said the cat went into the road and got hurt. He was literally interpreting it. If we have not used an idiom regularly in our family he is much less likely to understand it. The ones we do use, he will use himself because he has had practice hearing it. This is a reminder to me that using slang or idioms can hinder the learning process of a child with autism. Just for those who have added interest in autism. My son follows rules to a T. If there is a rule list posted he will take the time to read the whole thing. Our local McDonalds has a large board with about 15 rules posted, such as "must wear socks". He will whisper to me about a child not wearing socks as if the child might go to jail. I have to explain that it's good hygiene but no one will say anything, it's not a big deal. The large air-filled jump castles normally have a warning sticker stuck to the entrance and he will stand and read it before he gets on to make sure he knows the rules. Tonight we were at a concert for his sister and the announcer says, turn your phones to vibrate and my son turns to me and says, "did you turn your phone off?" Adults and teachers love him. He does exactly as he is told. But this does not go over well with his own peers. He takes it personally that kids swear or say mean things about teachers. These are pretty average behaviors (not necessarily good, but normal) for a 12 year old. My son might go silent and separate himself from the other boys or he has even come home crying about what students have said about their teacher. There is another issue about this I want to bring up, but I will wait until tomorrow, this post is getting long. I was a little more prepared for the drop-off student the second time around. I asked the para who dropped him off again if she brought anything for him to work on and again it was a no. I asked the para who was in my room what else besides copying words does he do? She said, "Well I think he really likes copying words, he just does it all hour." A guest lecturer once told a story of when she was working at a center for people with disabilities and visited a workplace that a few of the clients were employed at. She said that the people with disabilities were sitting in a room on chairs all day separating tin foil from other pieces of garbage so the company could reuse the tin. For a whole day, I believe she said they made around 40 cents. Everyone involved at that time thought they were doing those clients a favor by giving them a "job". However, giving a choice between doing something more meaningful and picking apart tin foil all day long we can assume most people, even people with disabilities would choose the more meaningful job. A person with a disability that prevents them from expressing themselves easily may appear to be enjoying an activity when in fact they were never given a choice to say no.
Having this discussion in my mind, I decided to give this student a choice, I asked him what he would rather do... make his teacher a card with words and art or copy words. He chose to make a card. It made me feel incredibly good, because I remembered something vital that sometimes we forget, people with disabilities are no different than than all of us, they want choices too. What was very surprising was how good he was at art. To make his card for the art portion I found a picture of house and a dog online that he could copy. He took a lot of time shading and paying attention to details. He really blew me away with his talent. I cannot wait to see as he is given the ability to attend art classes how his gift will grow and enable him to express himself. Below are the pictures he copied. He chose the dog he wanted to copy. I gave him letter stickers to place next to the dog. Last night was our community meet-up for students and young adults with disabilities. The theme was buying Christmas presents and wrapping them. I thought I would just be roaming around helping participants choose presents but a young adult who is blind came asking me to help guide her around to find presents. This was actually a great opportunity for me due to a class I am currently taking regarding sensory disabilities.
Some things that were difficult during that experience were: She did not hold onto my arm or shoulder so I did not know how fast or slow to walk, so I ended up walking somewhat sideways to always know where she was. Other people with disabilities or caregivers in the room did not realize I was helping a person who is blind and frequently got in between the both of us and cut her off. It was very crowded and loud which made it more difficult for me to describe the items on the table. Some things that did work well: If I described something that seemed interesting to her I would ask her if she wanted to feel it. Colors were important to her because she knew tastes of people she was buying for and so I always described the colors. Listening well was vital. She expressed interest in buying things for children so I made sure to mention anything that looked like it was for children. It was one of my favorites of the meet-up yet. I felt really useful and had fun helping pick out presents. A class I am enrolled in is currently discussing deafblindness. This means a student could be in some form both deaf and blind, or completely deaf and completely blind. Today we were showed numerous videos of a young child named Clarisa Vollmar. Her parents have a public Facebook page for her, to educate the public and share her successes. As I reflect about what I have seen of her life so far I am amazed and heartened by the support their community, family and therapists offer the family in acceptance and tools to enable Clarisa to live as full a life as possible.
I have a cousin who is blind and nonverbal. She has and continues to spend most of her life in an institution. Clarisa knows her family members, feels her dad's beard, loves when her mom rolls her around on the bed and enjoys feeling vibrations of TV shows like Sponge Bob, sent to her special vest. I am so glad we live in a time where every measure can be taken to further the abilities and quality of life of a child with special needs. I wish I could have known my cousin better. Everyone in the family was kind to her, but she was relegated to sitting on the couch while everyone went around her and then returned her back to her institution. Clarisa's life will not be like that and I am so grateful. A professor recently encouraged me to include a blog about my experiences that I am having while in school. Different settings will be included from monthly community events, substituting in the local public schools and clinical hours assigned to me through my teaching program.
This week I had a student with significant intellectual disabilities dropped off into my class. And I mean literally dropped off. The paraprofessional dropped him off and said she would be back at the end of the hour. I asked her, what does he normally do in this class? She said usually he just copies words. My heart sank. He's not going to do that in my class. That's what I was made to do as a child after I got into trouble. Copy this sentence 100 times. What joy. I quickly looked around the room trying to find something I could do with him that he would be capable of and learn something at the same time. First I wanted to know something about his cognitive level so we played three games of tic tac toe. He was capable. I found a game on a bookshelf called Hedbanz that has lots of cards with pictures and the name of the picture below it. I laid three random cards on the table and asked him which one do you like? I told him to put the one he liked in a pile. As we continued to do this I would ask him simple questions about the cards, which one can you eat? Which one can fly? We would repeat the words he had troubles sounding out. The hour ended and the para came back to pick him up. I was told by an educator who is not directly involved with this student, but knew him, that this situation is not surprising. A few questions that come up that are related to my project I made this website for are: Why did the para drop off the student with a substitute knowing he would be doing nothing meaningful? Why wasn't there a plan of action or possible learning activities delivered with the student? If other people, even outside of his teaching team, are aware of this poor learning environment where is the communication gap on the team? Is his IEP sufficient or is the team just not carrying it out? I say all this not to make judgments against his whole team but it's a place to start, by asking questions. I made a difference for one hour, that's all that was in my control. The next hour came with it's own challenges. I look forward to seeing him again soon and I will be more prepared. |
AuthorSpecial Education major in a university teaching program. Substitute teacher, previous homeschool mom, wife. Archives
September 2019
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