Was surgery OK?

There is a lot of controversy over this article about this boy with autism and his parent’s decision to operate on him to stop a behavior. I think you have to look at it from all different perspectives to say what is acceptable because there is a fine line between right and wrong. Many people’s first instinct is to say this is not okay and be extremely mad about it, however in this particular case I think the surgery was okay on this boy. The family had tried every other option they could think of to help him. He would scream as loud as a lawn mower over one thousand times a day. The surgery was also reversible which is the main reason I’m okay with it. This is a big reason because if it did not help or made it worse then they could fix it.

 If there were no other options and there was no other way to stop this behavior it is considered acceptable to me. In the article they said they had looked for a trigger and had looked for other ways to get him to stop but nothing was helping. It might have made him upset to make that noise and drove him to make it even more.

 It would be a tremendous strain on the family to have that noise one thousand times a day every day for years on end. It also mentions that the twin brother was negatively affected by it. This could have been a huge hassle with them not being able to take him anywhere. It probably annoyed the neighbors and even the family.  This might have been the only way they could keep him in the house and him with the family.

 My main reason for accepting it is that it is a reversible procedure because if it harmed him more than helped him it can be fixed. If the surgery does not help it can be changed back to the way it was. If it ever had a negative consequence then it could be changed back to how it was before the surgery and they could try another option they might not have thought of.

I fear that in other cases where surgery might not be necessary procedures like this will be used. This is a very thin line people are walking on when dealing with people with disabilities. This is a very hot topic for parents who have kids with IDD. If you can do surgeries on them for behaviors in extreme cases now it could gradually become less and less severe to where they would operate. This could become a very bad thing if not monitored carefully. I am glad people are very careful and try all other options before they even consider surgery.

Safety

Safety is a huge issue for parents with children with disabilities. They want to be protective but still allow them some freedom and let them be normal teenagers, kids, or adults. Parents mainly worry about online safety and them on their own. Parents also worry about school and when they are with friends.

School can be worrisome for parents because let’s face it not every school is very accepting of people with IDD. They worry about their kids being bullied or not getting the education appropriate for them.  Schools are getting a lot better but not all are where they should be. I think ours is one of the best when it comes to not bullying but we still need to work on it. I don’t know that everyone will ever be accepted fully but everyone can take steps towards helping them fit in.

Parents worry about their kids being on their own a lot too. Some can be very independent and eventually live on their own with friends while others need a caretaker all the time. Their safety is important and letting them try to stay on their own for the first few times can be very nerve wracking. They are worried they will get hurt and I think every bad scenario goes through their heads of what could happen to them.

What I find interesting is that parents have told me they worry about their children being around their friends. They worry when they go hang out with people without IDD they actually worry that they are going to be left out. I think this is crazy that a parent would have to worry about their child hanging out with their friend.

Social media and the internet is a parent’s worst fear. Their kids can access any website, and anyone can see their child’s profile if they are not careful. It is better now that they can put blocks on it and make their profiles private. The one problem is that they cannot monitor who they accept as followers or friends for their social media and sometimes the blocks can be broken.

Staying Connected

There are a lot of ways to stay connected to friends that have IDD that you were best buddies with. You could call, send letters, text, email, hang out or volunteer or work where they go to camps. If you are moving away, going to a different school, or its just summer vacation it is good to stay in touch.

Working over summer at a camp for a friend is a great. You get to spend a lot of time with them and meet more of their friends and make even more friends of your own.  I know it helped me get to know a lot of the people that were going to be in best buddies in the other schools around my area. It is very helpful to know their names and personalities before they get to school or when your friend is talking about them.

Texting and calling them can be a great way to stay in touch. It is a great quick and easy way to keep up on what they are doing. If they have their own phone this is the best way to go if you moved a long way away.  This is a nice way to not spend a long time to try to communicate with them.

Emailing is becoming more outdated but a lot of people with IDD can use it because their parents will allow it more than having a phone. This is a very effective method of communication with them because they can use it and it is relatively easy to use.

Hanging out with your friend with IDD is a great way to stay connected over summer or if you change schools and stay in the same area. If you move it becomes a lot more difficult but it can be done over breaks and when you come back to visit home.  You can do any activities you do with your other friends or invite them to come with you and your other friends to do things.

Sending letters is very outdated but believe it or not it brightens up their day. It is great to get a letter from someone just because. It shows that they are willing to put time and effort into trying to talk to you. It is also nice because they don’t get much mail of their own. It would make them feel special.

Art Project Ideas

There are many different things you can do with a person with IDD for an art project. If they like doing art you can incorporate many things they like and that are popular. There are different things based on the holiday or season that is near or just based on different movies they like.

One of the easiest art projects is painting. This can be done on any different surface or object. For example you can paint on pumpkins for October or on a canvas or paper. There are different things you can paint on the paper or canvas for the different seasons. You can also paint or draw any of their favorite characters from movies or TV shoes.

There is also crayon melting as a fun art project to do. You can make their names in the wax so it looks like there is a rainbow of drips around their name. You can also put pictures or other words on the paper to have the wax melt around it. To make this you hot glue crayons along the top or side of a paper or cardboard. Then you cut out the letter or shape you want and glue it on. After the glue is dry you tilt the card board so the crayons are pointing down and run a hair dryer over the crayons to melt it. This will create a dripped wax look and the shape or letters will still be visible.

You can make friendship bracelets or any type of jewelry. Friendship bracelets are the best things to make. This shows them you are their friends and it does make them super excited that you get to wear matching bracelets with you. All you need are beads and strings to make bracelets.

There are pots or statues you can paint and decorate as another art project that people tend to like to do. There are places like Potter’s Obsession where you can go to paint different pre made statues. They have all different kinds of statues and pots to choose from. There is also every different colors of paint to choose from. They put it in the kiln to make it shiny after you paint it and you can go back and pick it up.

Keeping Calm

There are many different ways to calm down people with Autism. The most common one is pressure. There are a lot of different ways to give this. One of the students I help has a swing that gives him a large amount of pressure when he is in it. It is almost the width of a hammock but is attached like a tire swing and looks like a cloth swing. He can go forwards, backwards, sideways, and in circles. There is also basic pressure where they get people pushing on their head or chin. This for whatever reason helps keep them calm and makes them not as aggressive.

Another way to keep them calm is take them to a Chiropractor. This releases tension and keeps them happy. They tend to be less aggressive and be in a generally better mood after visiting the chiropractor. If they keep going on a regular basis they become less aggressive overall.

Some people like to have something to chew on. This could range from anything from gum to a chewy. The chewy is designed specifically for people to be able to chew on them so they do not hurt their teeth or anyone else. If they are at a lower functioning level and cannot have gum then they are generally using this. If they are higher functioning they can have gum which is not always a better alternative because it can be swallowed and is bad for their teeth. I would recommend a chewy for anyone who has a child who bites a lot or has Pica. They are a very tough material and it is not easy to chew through and bite off so they cannot swallow it as easily.

Another thing to help keep them calm is keep them active. In some cases the more active they are the less they want to be aggressive and use force when they are not working out. Some people swim, lift weights, walk, run or play sports for their workouts. Any of these can keep the person very active and tire them out. A lot of people actually like it and look forward to it if done correctly. If you pick an activity for them they enjoy and they are around people they like then they will look forward to working out. If it becomes part of a routine then it will be very easy for them to transition to.

Breaking Steriotypes (Being blind)

Blind people cannot see anything at all is a common misconception. There are different levels of blindness. Some cannot see far away while others cannot see close up. There is also some where people cannot see out of their peripheral vision and some cannot see out of their direct line of sight. There is also night blindness. All of these things can make people be considered legally blind but they can still see a lot of things. There are other types where they can see motion or shapes but not anything else.

Blind people cannot use a computer is another common misconception. Blind people use computers a lot. It might not be the easiest thing to use all the time for blind people, depending on the level of things they can see, but it can be done. There are little bumps on the keyboard to help them type and keep centered on the keyboard. There is also speaking text where they can have the written text be spoken to them. If they are not completely blind then they are able to use the computer either close to them or far away from them which ever they need.

Another common misconception people have is that blind people cannot use a cell phone.  One of my blind friends has an IPhone and is on it all the time. He loves the freedom it gives him. He is now able to communicate with all his friends and parents so he can go out and do whatever he wants. There are a lot of adaptive technologies like speak to text and you can talk to make apps work that help blind people to be able to use phones.

A common misconception is that blind people are totally dependent on other people that can see for daily life. This is definitely not true. Blind people can get from place to place with their cane or service dogs for safety. It would be very easy to rely on someone else but there are always ways to overcome challenges. They might not be able to see but their ability to problem solve is great. It takes a lot to come up with ways you can live independently, safely, while blind. But it can be done and technology is making that much easier on them.

Blind people cannot raise children on their own is another very common misconception. I have seen that most people are shocked to find out I actually know two blind parents who raised a child on their own. They just had to come up with some creative ways to do it and keep their child safe, one of which included tying bells on their daughter’s shoes so they could tell where she was. If they fill their world with sounds then their child can be safe in the house. They just will live in a noisy house.

Breaking Steriotypes (Deafness)

There are common misconceptions about being deaf. They are they want to hear, they can’t hear anything at all, they can’t function in society, it’s a tragedy to have a deaf child and cochlear implants make you hear. These are common misconceptions and I know I used to think some of them were true. I will show you how they are untrue through examples.

They want to hear is a very common misconception. Marlee Matlin says she was born deaf and she doesn’t want to wake up one day and say Oh I can hear she likes how she is and she has made a great name for herself. She should be proud of herself and what she has acomplished.

They cannot hear anything at all is another misconception. There are different levels of deafness they can use hearing aids to amplify sounds so they can hear. They can hear different pitches sometimes or really loud things sometimes without the hearing aid. They don’t live in a silent world they just cannot hear like hearing people.

They cannot function in society is another stereotype. This is very untrue they can text and write notes to communicate with anyone they need to. They can also drive cars so they can get from place to place they need to. They can hold almost any job except being a pilot and firefighter. They are more than capable of having a family and friends and living just like anyone else who isn’t deaf would.

Another common misconception of having a deaf child is that it is a tragedy. This is very untrue you might need to learn sign language and add a couple adaptations to your house to make it safe and convenient for the deaf child but it is not a horrible thing. Signing makes life so much easier for the child and it lets them be able to communicate what they need to you. It is much more common and talked about now and there are deaf communities in the cities to help the child feel more normal and accepted.

The most common misconception is that a cochlear implant makes you hear. Although that would be ideal and it was what they are aiming for. They just tap into your brain and put electrical signals into it to make it into comprehensive language. This is close to hearing but you have to program frequencies into it for the frequencies to be recognized. It also sounds almost robotic and not like a voice in the least bit.

Breaking Steriotypes (Autism)

There are many stereotypes associated with people with autism or other intellectual disabilities. The most common ones are they are happy all the time, they want to be cured/fixed, they don’t understand when someone is making fun of them, and they have no emotion. These are all very untrue and I will give examples of how they are untrue with examples of real people.

The first stereotype is that all people with autism are happy all the time. This is not true in the least bit! They feel every emotion that we do I have seen my friends with autism or other disabilities have a lot of disabilities. They tend to have extreme emotions which are shown in most media as happy emotions. Most of the stereotypes stem from media showing the certain group a certain way which is why they tend to be thought of that way.

People also think that people with a disability want to be cured. This is another untrue common stereotype about people with disabilities. They are happy to be the way they are. If someone came up to you and said, “Do you want to be cured and be as smart as me?” you would probably get upset and offended. This is just the same with people with disabilities they think they are just fine the way they are. They do want to do some things they cannot do but would not give up who they are for that.

The other common stereotype is they do not understand that they are being made fun of. This is a ridiculous thing to think! They are not incapable of thinking and are definitely aware of the people around them. The biggest event we have for best buddies is the Spread the Word to End the Word campaign. This campaign promotes people not using the R-word. They think it is hurtful for people to use the R-word because it offensive to them. It really hurts them to be called the R-word or be made fun of.

They don’t have emotion is the other common misconception of them. This is the most untrue stereotype I have heard about them. They are some of the most emotional people I know. Even the lower functioning friends I have are still emotional. They don’t express it as much if they are non-verbal because they can’t really say it but you can definitely see it in their eyes. I love that sparkle in their eyes when I come up to them and they see me and get excited.

Dr. Karen Gaffney

Dr. Karen Gaffney is an inspiration to me. She is a very strong willed person who does anything she sets her mind to. She is the first person with Down syndrome to ever get their honorary doctorate. She has also helped in a relay to swim across the English Channel. She has also ‘escaped’ from Alcatraz 16 going on 17, she hopes, times. Among those things she is also a great speaker. She is an Amazing woman who has accomplished a lot and breaks down stereotypes for people with Down syndrome.

Dr. Gaffney received her honorary doctorate from the University of Portland. She said she was very excited and studied very hard to get it. She is so proud of herself and I am sure that most of the world would be amazed to hear that someone with Down syndrome actually has a doctorate, even if it is an honorary one. It is very impressive to me that she put forth that much work and got herself accepted into a University. I am sure this makes a lot of parents hopeful that their child will be able to become whatever they put their mind to because if she can do it so can their child.

Karen is also an amazing swimmer who has participated in many relays, marathons, and other swimming events. She not only raises awareness for Down syndrome but sets a great example for people with Down syndrome of what they can do if they stay focused and try their best. Some of her greatest accomplishments are escaping from Alcatraz not only once but 16 times. This means that she has swam from the island to the shore of California 16 times. This is very impressive because according to her it is not a short trip and there are waves and sharks in the ocean around her. She has also swam for 9 hours to raise awareness for Down syndrome. That is a long amount of time and one of her longest continuous swims. She also helped in a relay of people to swim across the English Channel.

Dr. Karen Gaffney is one of the best speakers I have ever heard. She makes the audience listen to every word she has to say and want her to continue after an hour. She spoke at our Leadership Conference in Indiana this past summer and it was one of the most memorable parts for everyone. She makes such an impact on her audience because her story is so unique and she is great at telling it. I encourage everyone to go listen to her speak if you get an opportunity.

Music for the Deaf

Most people might think that people who are deaf cannot do any kind of music at all well there are three ways to get around that. The first one is the easiest when they get a cochlear implant. Second the music has no spoken words only instruments and sign language. Or third the person has someone sing in the background while they sign to it.

 The first way of getting a cochlear implant helps so they can sort of ‘hear’ what the instrument or the voice sounds like. They can then tune work on the music and associate the noises with a note or beat like a hearing person. When they are singing they can adjust their pitch also but would need extensive help from a coach because the cochlear implant does not actually let them actually hear or hear most of the noises hearing people hear. Sean Forbes is a deaf musician who uses a cochlear implant to help him with his music which is rapping and drumming. He has been very successful and created D-PAN (Deaf Professional Artists Network).

The second type of music is when deaf people sign to music without any spoken words and play instruments. They rely on the vibrations to tell them what note they play and if they are all in unison so they play extremely loud. Beethoven's Nightmare is a great example of this they are an all deaf band and play extremely well together. Even though they cannot hear any of the music they paly they can still make their own songs and make it sound really good. It also gives off great vibrations at the concerts for the deaf people to be able to feel it as well. They play really loud so they can feel it and play together but also for the other deaf people to experience it.

 The third type of music is when people who are deaf sign to music while someone sings to the music. This is shown in D-PAN’s “We’re Goingto Be Friends” by The White Stripes. All of the kids in the music video are deaf and they get the lyrics and translate them into sign language then sign them to the music. They can feel the music so they can feel where the lyrics should go to make the story. This is the most common and it looks really pretty and hearing people can understand the music as well too. This also means that the hearing people can sign to music like this as well. Lisa Smith does this as well. She is hearing but signs to music because she loves it and cannot sing because of her disabilities.

 Music can help not only the deaf have great experiences but hearing people as well. It shows the hearing people how beautiful sign language can be. It helps the deaf experience music and have another creative outlet. Music is a wonderful thing and unites people.

Twins With IDD

From my experience twins with disabilities vary from twins without disabilities. There is usually one twin that does a little better than one in something but it is usually shown more in those with disabilities. They also have more of a chance of developing disabilities if they are identical twins. There are also twins with one with a disability and one without.

One twin usually outshines another in a certain area this is the case in both twins with disabilities and ones without. They usually have certain strengths and certain things they can do better than the other. The differences are usually more noticeable in the twins that have disabilities. The differences are less noticeable in the other sets of twins. They are less susceptible to getting differences than twins with disabilities.

If there is a slight disability with both then they are very likely to develop differently. When dealing with individuals with disabilities it is easier to shape them and then disabilities can be altered with minor changes in how they are educated or treated. If there is any difference in how the twins are treated then they can easily turn out very differently. In twins without disabilities it isn’t as easy to shape how they will turn out because they aren’t as easily affected by the subtle changes. They are still going to be affected if there is a large amount of difference in how they are treated there will be differences. If there are only subtle differences then the changes will not be as noticeable.

There are some sets of twins where one has a disability and the other doesn’t. This can be due to a number of reasons. In some cases it is because of labor complications where something happens to one of the two healthy babies like one is born then the other gets a complication during birth where they suffer brain damage. Another is a pregnancy complication where one baby is damaged maybe by an accident or drinking or some medications. Another way is they are just genetically made that way.

Halloween Activity Ideas

I have found that the students I work with absolutely love to dress up and do things for Halloween. There are a lot of activities you can do to have fun with someone with disabilities around Halloween time. Doing fun activities based on holidays coming up is a great bonding and is very easy to plan activities around.

Most of the students I work with ages anywhere from 5-18 love to carve and decorate pumpkins. They are very helpful with drawing the design on the front for you to carve. They also like to paint faces on the front of the pumpkins. The pumpkins usually turn out very cute and there is nothing better than the smile on their face because they made something all by themselves. Before decorating them it is usually fun to go to a pumpkin patch and pick out the pumpkins they want to decorate.

There are all kinds of Halloween treats you can make with them. There are some simple treats like rice krispy treat pumpkins, witch hat cookies, or any kind of cupcakes or cookies that you can decorate with Halloween symbols. The rice krispy pumpkins are very easy to make. You make them like rice krispy treats using any generic recipe adding orange food coloring and shaping them into a ball then add a tootsie roll on the top for the stem. The witch hat cookies are also easy to make. Bake any kind of cookies you like, make some puppy chow, get some icing and ice cream cones. Put some puppy chow in the ice cream cones to fill it about ¾ of the way. Put the cones on the cookies and add some icing around the bottom of the cones and ice the cookies and the cones so they are one color. Then decorate them with whatever else to make them look cute. You can put cats, ghosts, pumpkins, or anything that reminds you of Halloween on the cupcakes or cookies. They will just have fun decorating and eating the treats.

A lot of the students still love to dress up in costumes so doing makeup for the costume before they go trick or treating or to a Halloween party is a great and fun idea. If they are a girl it is a lot easier they can have pretty makeup on or have a cute face painted on to match their costume usually. If they are a boy it is still possible to do their makeup you can paint their face to match their costume or put fake blood or cuts on them.  

The Transition Center

The Transition Center is where people with disabilities go in Cedar Rapids after high school. They have a lot of learning opportunities there and help them get on to another place, whether it’s a group home or on their own. This is a program for people ages 18-21 with moderate disabilities.

They have some different levels of places where you can be taught based on skill level to do the specific job the individual is working for.  They work on things so they can function on their own or in whatever type of living situation they would be in. Some live on their own, some in a house with other people with disabilities on their own and others live with others and a few staff members.

This is not just in Cedar Rapids there are places like this all around the state of Iowa and in other states as well. These places are designed to help transition the individuals from school into life. These centers focus on things like daily life skills, work skills, and anything a person would need to use to survive on their own or in a group home.

These centers differ from school in that the individuals get to go into the community much more and learn what it is like out in the community. They also don’t learn much about math or science or other subjects not pertaining to the job they are going to be doing. They work more on developing social skills and doing what they are told and need to so they can get the job done. They also work on grocery shopping and picking out appropriate foods and cooking them.

Places like the Transition Center are what make it possible for individuals with disabilities to be very independent. These places are great places and very helpful for the parents. The individuals also tend to look forward to all the independence that comes along with the center.