Wednesday, July 18, 2012

NOAH Conference Session "Ask A Parent Panel"

One of my favorite sessions at the 2012 NOAH Conference was the “Ask a Parent Panel” with several different moms and dads ready to answer a multitude of questions on raising a child with Albinism. Their children all varied in age, sex, and race so there was a great diversity in the answers for each question and every parent had their own ideas or opinions to share. Here are my notes from the question and answer session with them all.

*Q: Do your kids freak out in crowded places and how do you handle this so that they can be a little independent?

 A: Yes even at 10/12 years old they still freak out in crowded places as is normal with a visually impaired child. We try to make sure they know what color we are wearing when we left the house so that if they get lost in a sea of people they can try to locate us by our color shirt. Another mom’s answer: I always tell him “Don’t panic, you don’t have to find us we will find you just stop where you are and yell!” She said several times they have been in a crowd and she will be no more than five feet from him but he loses track of her and starts to shout her name. At times he feels comfortable to wonder a few feet away or so as long as he knows she will find him when he shouts for her.

*Q: What are some challenges your kids face?

A: Headaches are common. The key is teaching them to recognize when one is coming on so that they can take medicines or go lay down before it becomes monstrous and they miss school because of it.
-Hard to meet new people. Often times we have to coach them to ask the child’s name and information when they meet because due to their low vision they may not recognize them the next time they meet. Also it’s hard due to self esteem to get them to meet new people. You have to push them sometimes but know when to back away and let them handle it themselves.
-Seeing things when out and about is often hard. When you point out “oh look at that helicopter” (etc.) this is hard for them to follow or see with out technology/magnification devices on hand so make sure to carry some with you at all times so that they do not miss out on things. As they get older force some independence on them and make them carry their own devices to be able to see things outdoors. Sometimes the child does not want to admit that they are different than others so they will resist and refuse to use the devices to help them see better and you cannot always force this issue. When they feel they do not want to miss out anymore they will “hopefully” come around.
-Dealing with a devastated child is very hard when they face something that their vision simply will not allow them to do. One parent told a story that their son just wanted to excel in baseball and when he was no good at it he just crashed, devastated and disappointed in himself. You have to reinforce their strengths. Tell them you’re proud that they just made the team! Etc.
-Dealing with well meaning teachers is hard. Sometimes a teacher will think they are helping the child by not allowing them to do something like go outside at recess on a sunny day but really they are hurting the child who WANTS to go outside and be normal with the rest of the kids he just needs some sunscreen and such to do so. Also when a teacher means well by not wanting the child to feel different from everyone else in the class so she gives them the same handouts but really the child is different and needs the exception made to give them large print hand outs or help them copy it down. These type well meaning teachers often do more harm than good.
-Sometimes you have teachers who just flat out refuse to enlarge things for them or often “forget” to do things to help the child. One parent mentioned to deal with this when her child’s teacher “forgot” to enlarge the print on her handouts, she went to the school with a handout 4x smaller than normal (since her child needed it 4x bigger than normal to read) and gave it to the teacher to read. The teacher could not read it at all and she reinforced that this is what she did to her daughter so how was she supposed to read the homework either? You have to make it where they actually “see” where the child is coming from and why they child’s eyes are different from the other students.

*Each parent gave their “1 piece of advice” to us next.

          - Independence. Don’t jump in and take over when a problem hits, teach the child to self help. When a teacher forgets to enlarge print on something, have the child first take it to the teachers attention before you jump in to fix the problem for them. It will mean more coming from the child than from “just another angry parent”.
          -Get an Orientation and Mobility Specialist. They will teach the child how to navigate every day areas so that they are familiar with their environment. (They teach them how to use walking sticks and how to count their steps around a room. Ex: It’s five steps to the right then two steps to the left to navigate our hallway, or the fridge is five steps away from the back door. Etc.)
          -Do not let the schools take you off of an IEP and switch you to a 504 Plan. Know your legal rights!
          -Don’t limit the child; let them try whatever they want to (as long as it’s safe) even if that means that they fail some. One of the parents mentioned that their doctor told them the child would never and should never ride a bike with his low vision, but they let him try it in a safe zone and he LOVES it! One day he may crash and he may never be able to do it out of their safe zone around their home but at least they never told him he could not do it at all.
          -Make sure to expose them to other children and adults with Albinism. They need to see successful, career professionals with Albinism to show them that they can be successful even with Albinism and low vision. They also need the friends with and some without Albinism. Get them to do the summer camps for low vision kids and for kids with Albinism to push them to do more and try more things like sports and such. It’s important that they have kids in their lives who can relate and sympathize with their issues with their vision and their Albinism.

* Q: How do you handle sunburn and schools/teachers?

 A: When the child is older if they forget the sunscreen it is definitely a learning experience. They cannot always rely on the parent to stop them and put on the sunscreen for them at some point the have to be independent and remember to do this for themselves. It’s important to start applying sunscreen each time you go out early on so that it becomes a habit for them and make sure they know and understand what happens when they forget the sunscreen. (By 6-7 years old the school will expect them to know how to apply the sunscreen themselves so make sure to teach them how before then.)
    -Also, have sunscreen and a hat in both your IEP and/or your 504 plan for the school to apply or give them to do for themselves before they go outside each day. Teacher will often forget so they need to make sure to stand up and make it known that they need it if it has been forgotten and not just go ahead outdoors and suffer with a sunburn. If the school refuses to put this in an IEP/504 Plan for you threaten a lawsuit because as bad as that sounds they will consent to avoid any legal issues. (Use this only as a last resort.)
    -One parent also mentioned that if you can afford to, use a neuro-psychologist to give a report on “how the child learns” to the school at your IEP meeting. They feel like the person who evaluates your child for the school, since they are paid by the school, are not looking out for your child’s best interest but that of the school. Using an outside source ensures that your child gets everything from the school that they need to excel.
    -On taking notes at school: Get handouts of all notes taken in class from the teacher on paper that is enlarge for the child to see. Still urge them to take some note in class and listen for things not on the handouts. Use coping and highlighting as well.
    -At the beginning of the year it makes a big impact if the child will write a paper or go to the teacher and tell them a little about themselves and their Albinism as well as how they see things. This usually has a great impact in getting the teacher to help the child throughout the year and not forget to make accommodations for their vision.
    - Sometimes it helps to get the vision spec goggles to show the class and teachers how the child sees. (I shared a link in the last post on where you can purchase these!)

*Q: How do you make sure your other kids (without Albinism) feel important as well?

A: Make sure the child/children without Albinism are allowed to help for things like the NOAH conference and other functions for families with Albinism and that they know that “Albinism is a family affair and we are ALL part of this family.” Ensure them that though you spend a lot of time with them for their eyes, you spend other time with them. (Examples would be braces/teeth, their school work, their sports, etc.)
    -Make sure you make the kids without Albinism use sunscreen before leaving the house as well, it’s always a good habit for anyone.
    -Make sure to take individual time with each child to make sure you are giving them 100% of your attention at some point.

*Q: How do you handle the lunchroom?

    -Kids with low vision typically report that they have a hard time spotting friends or an empty seat, and navigating the crowd and food lines in the lunchrooms at school. Some kids will take their lunch so that they can rush in and get seated before the crowds of kids start, others will have someone walk them through the lunch lines and to their table of friends. Some kids just have their friends shout out to them so that they can spot them more easily once they have gone through the line and are trying to find their seat. Each child though at some point has ended up sitting alone because they cannot find their friends or an empty seat near them so make sure you child is comfortable and happy to just be by themselves at times.

*Q: Dealing with bullying.

A: Even if the child cannot point them out they KNOW who the child is usually. Everyone knows who the bully at the school is and can usually tell you but sometimes the child may refuse or act like they do not know who is doing the bullying because the do not want you to get involved. There has to be a line drawn for when you get involved. If it is happening once a week this is too much and you need to take it directly to the school principal. If it is just an occasional bullying the child needs to be taught how to handle these situations because they are going to happen to them at some point. They need to remember to keep calm and always ask for help when need. (The person bullying them always wants the reaction!) If your kids are getting bullied make sure to get them some older friends because older friends can always intimidate the person bullying them and they will usually stick up for the child being bullied. If you have older/larger friends around they are less likely to get picked on. Help walk the child through several ways to handle the situations first rather than jump right in unless the child wants you to do so. If it continues make sure once you have made it known to the teacher and staff that it is happening that you make it known to the “higher up authority”—the principal, superintendent, playground official, etc.

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