Tuesday, December 27, 2011
Would you ever dream of allowing your son or daughter to receive an education that is less adequate then his or her peers? Would you deny your child something that would allow them to be successful now or as adults? The answers to these questions are obvious to anyone, but all too often it happens to children who have a disability without their parents ever having any intentions of letting it take place.
Often times when parents learn of a child’s disability, especially in the case of mental impairments that don’t present themselves until later into adolescence, they are warned to “be realistic” when it comes to the child’s abilities and future potential. This precept is, however, very flawed. If you as a parent don’t have big dreams for your child, who will? Children thrive on the encouragement and support of their parents, so you are in a prime position to influence your child to be the very best and to succeed. If you have low expectations for your child, that is probably the level of success that they will reach.
If we as parents of children with disabilities truly want our kids to succeed, we must not only dream bigger, we must also fight harder. If we are told to “be realistic” then let’s do just that. The world of jobs and employment is a competitive one. A person with a disability faces an extra challenge of beating out the competition despite a disability. They must prove that they are better, smarter, more qualified, than all the other applicants. If we want our kids to grow up and be successful in the job market, we must not only make them aware of this fact, but prepare them for it. We must provide them every opportunity to succeed and push them to do their best even if they have an impairment. We owe no less to any of our children, disability or not.
The article that I drew my inspiration from, written by Kathie Snow and also entitled “What We Owe Our Children” has some great advice on creating high expectations for our children so that they will one day have high expectations of themselves.
She says, “. . .let’s be really realistic about what we, as responsible adults—parents, teachers, therapists, and others—owe children with disabilities:
· We owe them an unwavering commitment to have high expectations for them and to support their dreams, so they can dream big dreams for themselves.
· We owe them more than an “appropriate” education that’s as good as, or better than, the education of students without disabilities, because they have a harder row to hoe, now and in the future.
· We owe them an age-appropriate, inclusive education, as well as participation in inclusive community activities, so that they can benefit from the ordinary and precious childhood opportunities to learn reading, writing, and arithmetic; to know how to get along in the real world; to make friends; and to acquire many other skills that can only be learning in real world, inclusive environments . If the current public school can’t full this requirement, parents should explore other public schools , private schools, or homeschooling.
· We owe them whatever assistive technology devices, supports, and modifications they need to enable them to be successful now, and in the future, at home, school, and other inclusive environments.
· We owe them every opportunity to experience all the ups and downs and privileges and responsibilities of a “normal” life: to try and fail and learn from mistakes, to experience the dignity of risk, to receive an allowance and blow it on junk, to do chores at home, or other ordinary childhood experiences.
· Finally, we owe them our solemn promise that we will protect them from those who would cause harm through low expectations, sub-standard education, segregated environments, and/or other malignant influences.”
This article provides some insight into raising a child with a disability, and has helped me to better understand the importance of not letting my son’s disability be a “crutch” or excuse for him to get by in life, but instead to encourage him to be great. I hope you enjoyed it and that it has helped you as well. This article and many more pertaining to the topic of disability can be found at www.disabilityisnatural.com.
Sunday, December 11, 2011
Our kids have to go to school, and as parents we want them to do well, learn all that they can, and have some fun while they’re at it. When dealing with kids who have a disability, a normal classroom setting may not be appropriate, however. This doesn’t mean, though, that they do not deserve an equal education. Tennessee follows the federal guidelines of a law known as IDEA, or Individuals with Disabilities Education Act, which provides funding to states who follow its guidelines in educating children who have a disability. Its purpose is to ensure that everyone gets a “free appropriate public education.”
The idea of IDEA (pun intended) is that each special child has a written plan in place that is specific to their needs and detailed to ensure that they get the best possible education. A student with a mental impairment will need something very from a student with an auditory impairment, so this law lays out a path for schools, teachers, and parents to follow to ensure that each student gets what they need.
To qualify under IDEA, a person must be between the ages of 3 and 21. (Remember, T.E.I.S. will help with your child’s education until the age of 3.) They must also fall within one of these categories: autism, deaf/blind, deafness, hearing impaired, mental retardation, multiple disabilities, orthopedic impairment, serious emotional disturbance, specific learning disabilities, speech or language impairment, traumatic brain injury, visual impairment including blindness, and other health impairment. Basically, they must have a disability that “. . .adversely affects their educational performance and need special education in order to receive an appropriate education.”
If someone isn’t sure whether or not their child has a disability or falls within one of these categories, IDEA allows children to receive a free evaluation. Students who are covered under IDEA are entitled to a meeting to create an individualized Education Program or IEP. There are several members of a team who come together to create an IEP including the child’s parents, a representative of the school, the child’s teacher(s), and some sort of educational evaluator who can explain results of the evaluation. These are all required members, however, they are not exclusive. Parents can request that the child’s therapists, counselors, or psychologist be present, or an educational advocate, social worker, or lawyer.
With all these people working in concert, the IEP is created. It creates measureable goals on how to help students get to where they need to be. It takes into account their strengths and weaknesses, their needs, and where they are performance-wise. In creating the IEP, the team determines what the “least restrictive environment” for that child is. The term “least restrictive environment” is used a lot in disability law related topics, but it is a simple concept. In the area of schools, it describes the most appropriate environment in which a student with a disability can participate. The ideal least restrictive environment is in a general education class room with non-disabled peers for the entire school day. However, this would not be appropriate for all students who are disabled. The range of least restrictive environment varies for every individual and can be as restrictive as away from the school, in-home services, but many times we see it in the form of a separate classroom consisting of only special education students. This concept is not an “all or nothing” approach, though. Students are not restricted to either general education or special education classrooms. Whatever mix might be appropriate is what will be implemented.
This is a very brief overview of the topic, but I hope it has encouraged you to learn more. There is a wealth of information out there to be found. You can go to any of the local schools here in Cannon County and ask for information on IDEA or Special Education services. I did so at Woodbury Grammar a few months ago and they graciously printed me out a large booklet on the topic! There are also several websites that you can visit, www.idea.ed.gov, www.tn.gov/education/speced, and www.wrightslaw.com/idea to name a few. Just Googling the topic will give you more information than you can sort through in one day.
I am also thrilled to tell you about an exciting way to learn even more about Special Education. Tennessee Voices for Children, a state wide advocacy program for children, is offering an informational class on the topic in Woodbury next month! The class is on January 8th at 8:00am in the Lions Club Building on Park Circle (next to the baseball fieldsand should last for about one and a half hours. For more information on this class, please email me at email@example.com and I will be glad to help! I hope to see you all there!
Tuesday, December 6, 2011
Quite often, I am approached in public about Christian. People ask questions and they want to know more about him, about his condition, and about his abilities. Sometimes when I get approached, people apologize for being intrusive, or they ask me if I mind them asking questions. And many times, when young children approach Christian, they ask questions that make their parents feel very uncomfortable! I have received many apologies from embarrassed parents. But honestly, I don’t mind.
Most adults who ask do so because they are concerned, because they see an innocent little baby, and I think they just want to know that he is ok. Once I tell them how healthy he is, and they see him smile, the questions turn into conversations about my amazing son! And children, well, they are just being kids! Curious, intrigued, and confused. One little girl, no older than three, saw Christian one day and walked right up to me and said “What happen?” I have done this plenty of times, so I didn’t have to think about my reply, “He was born like this, Sweetie.” So then she asks, “He a baby?” And I explained that yes, he was a baby, he was my son. Then she pointed at his eyes and said, “I no like that!” Her mom’s eyes got big and her face turned beet red. I said, “No? Me either! It’s not fun!” and I smiled at her. That was all the information she needed. She walked away and began playing.
Many people feel uncomfortable asking questions about Christian or talking to him when they first meet him. Many will look, but avoid conversation at all costs. And in all honesty, it is just because they don’t want to hurt my feelings or they just don’t know what to say. I want others to understand that approaching me is exactly the same as approaching any other mom out there who has her baby in tow. I am a proud mama, I love my son, and I will be glad to share him with anyone who wants to know more about him!
Tndisability.org has a piece on its website about “Disability Etiquette.” The whole concept is to teach others how to approach someone with a disability. Someone with a disability does not want to excluded from life because others are afraid, so this site gives suggestions on how to shake that uneasy feeling that so many people get when they are around a person with a disability.
The very first page reads, “Remember: a person with a disability is a person with feelings. Treat him or her as you would want to be treated, and then let common sense and friendship break down any barriers you may encounter.”
The site offers suggestions on how to approach persons with all different types of disabilities, and I urge everyone to read each one, but for sake of space, I want to share with you the standards they put out that apply to all.
1. A handshake is not a standard greeting for everyone. When in doubt, ask! A smile and a spoken greeting can go a long way! Some people may not be physically able to shake your hand, or they may just be uncomfortable with it.
2. Speak directly to the person with the disability. Sometimes we feel more comfortable talking to those accompanying him or her. But it is ok to speak to the person. I enjoy when people talk to Christian. It makes me feel like they recognize him as a person, and I am sure others would feel the same.
3. Don’t mention the person’s disability unless they bring it up first. I’m kind of torn on this one. I don’t mind when people bring it up to me, but there is a proper way to do it. “What’s wrong with your kid?” is obviously not appropriate, but when it doubt, this rule is probably the best way to go.
4. Treat adults as adults. I will add to this, treat children as children, and don’t treat anyone differently!
5. Be patient and give someone your undivided attention. This is important to someone who may speak slowly or with great effort.
6. Don’t pretend that you understand what the person is saying if you don’t. Simply ask them to repeat or rephrase. I know a mother whose son speaks sign language. He speaks some as he signs but he is hard to understand. She told me once that most people just laugh and kind of “agree” with whatever he says because they can’t understand him. Not only does it aggravate her, but she informed me that her son thought people who did that were just flat out being dumb!
7. It is ok to use common expressions like “See you soon” or “I’d better run along.” When Christian was first born, a good friend of mine from another state called me to ask about Christian and she asked what color Christian’s eyes were. Immediately she realized what she had said and started apologizing. She was almost in tears because she was afraid that she had upset me, because we don’t know what color Christian’s eyes would be. But it didn’t offend me. I know that it is just one of those things that you ask when a baby is born, and it doesn’t bother me. It also doesn’t bother me when people say things like, “Christian! Look here!” or play peek-a-boo with him. He actually likes playing peek-a-boo!
8. Relax! We all make mistakes. Apologize if you forget some courtesy. Have a sense of humor and a willingness to communicate.
There may always be that one person who gets upset no matter what you say, but I promise you, follow these guidelines and you will be fine. And by all means, approach a person with a disability! Talk to them. Treat them as what they are: a human being, someone worth getting to know, and a creation of the Almighty.
Hearing that your child has a disability is hard, but having to live day by day with a child or family member who has a disability is probably one of the hardest things anyone will ever have to do. It presents unique challenges, unwanted hardships, and daily frustrations. A caregiver, such as a parent, can get discouraged and tired when dealing with the struggles that come along with having a disabled family member.
I can attest to the difficulty. I spent the first four months of my son’s life making 2 to 4 trips to Vanderbilt per week, have spent his whole life fighting the Social Security office to get him SSI, make weekly trips to physical therapy, and have watched him have major, life-threatening surgery on more than one occasion. This is definitely not what I expected or wanted when I found out that I would be a mother, and this is the case with anyone who has a family member with a disability. No one signs up for it, and yet, there they are, forced into a position unexpected, unwanted, and uncontrollable. It is so easy to get burnt out or feel like you are in over your head. Taking care of yourself when faced with such challenges is vital not only to your health, but to the health of the person you are taking care of.
Helpguide.org has some valuable suggestions on how to prevent caregiver burn out and I would like to share them with you. The first suggestion is to learn as much as you can about the illness that the person you are caring for has. It will help you feel empowered and confident that you are doing all that you can and caring for them properly.Secondly, know your limits. I know that I struggle with this one. I want to be there for my son 24/7 and I feel like no one else can care for him as well as me. I struggle to allow others to do things for him. Realistically though, I can’t be there around the clock because of work, school, and my other responsibilities, and also for my own sanity. It helps me when I can step away for just a moment, let someone else take care of Christian, and focus on what I need. Be honest with yourself and realize where you need to draw the line. It will not benefit you or the person you are caring for if you are physically worn out and emotionally exhausted. Ask for help when you need it, and realize that asking for help doesn’t mean that you are weak, incapable, or lazy.
Thirdly, accept your feelings. Being thrown into the position of caregiver can bring about some emotions that most people wouldn’t expect, such as anger, resentment, guilt, and helplessness. Know that these feelings are not wrong. As long as you don’t compromise the well being of the care receiver, allow yourself to deal with your feelings. The fourth suggestion follows right along. Talk with someone you trust, find ways to cope with your feelings in a healthy manner. Do not bottle them up and repress them. There are also caregiver supports groups that you can get involved in, but counselors and therapists are a good option too.
And to all those who read this who are not care givers, I hope that you can understand the immense pressure that is put on a care giver. If you know someone who is a care giver and you would like to help care for them, there a multitude of things you can do. Offer to sit with their family member for the evening so they can go to dinner. If that is unrealistic under their circumstances, then send them a card, visit them, or bring them lunch. Sit and talk with them, let them vent their frustrations without casting judgment. Let them know that someone cares about them and that they are doing a great job.
I would also like to share with you some resources that you may be able to tap into to help you be the best caregiver that you can. The Upper Cumberland Human Resources Agency (UCHRA) has a wealth of resources that I urge you to look in to. Cannon County offers a transportation program that is available to anyone, but the elderly and the disabled get first priority. If you are struggling to afford the gas to take your family member to doctor’s appointments or wherever they need to go, this is a great resource. There is also an Energy Assistance Program that will help with utility bills for low income families and Cannon County also offers a Commodity Program which essentially gives free food to low income families. You may have an elderly family member on a fixed income who could use this, or might be able to use this yourself if the strain of caring for a disabled family member has left your resources stretched thin.
Mr. Larry Davis, the coordinator for the Cannon County UCHRA suggests that if you are planning on tapping into any of these resources, give their office at least 2 days notice if possible. The resources they have to dispense can change quickly, so to ensure that you get the help that you need, please call ahead of time. The Cannon County UCHRA office is located at 301 West Main Street, inside of the Adams Memorial Library, Room 302, in Woodbury. You can reach their office at 615-563-2916 or e-mail Mr. Davis at firstname.lastname@example.org
I hope you have found some useful information that will help you on your journey of care giving. If you have any ideas, comments, or questions, please e-mail me at email@example.com.
I will never forget the message left on my phone the day my doctor found something wrong on my son’s ultrasound. He was “concerned” about the results. He called three times that Thursday, each time sounding a little more urgent, but never giving details. I didn’t get the messages until Saturday evening, and by Monday morning I was ringing his phone off the hook trying to get a hold of him. When I finally heard the news, I came unraveled. The next few months leading up to and including Christian’s birth were a rollercoaster of emotions. It was hands down the most challenging thing I have ever had to face and I can think of few things that would be harder.
I am not alone in this experience, however. This experience happens more often than we’d like to hope. Dealing with the grief and other emotions that comes along with hearing your child’s diagnosis can be very challenging. So where do we turn for help? I have found a wonderful site that discusses how to deal with having a child with a disability, and I would like to share it with you. Not only so that parents who are having to cope can understand how to deal, but also so that those who are on the outside looking in can better understand what the parents are going through and know how to help them.
Learning of your child’s disability entails a mourning process, much like that of losing a loved one. Why you ask? Well, I haven’t found any research to back it up, but my theory is that the grieving happens because the parent really has lost something, be it their hopes and dreams for their children, their wishes to see their child grow up healthy, or a vast array of other things. But either way, the process is similar and there are several stages that a parent might find themselves going through. First is shock at the initial news. This may show itself in the form of confusion or a feeling of being overwhelmed.Next, and most obviously is sadness. Sadness is sometimes given a negative implication but it is very necessary to the process and helps the mourner to move on. It is also not to be confused with depression. Depression impedes the likelihood of moving forward, while sadness is a release of emotion that is necessary to moving forward.
After sadness, a person may find themselves angry. Whom the anger is directed at can vary from case to case, and unfortunately, sometimes that anger is focused on close loved one.Next, many parents go through a stage of denial. They do not want to hear the diagnosis of their child, so they don’t. Like anger, this reaction is not voluntary. It happens as a defense mechanism that allows them to get through such a horrible time.
Loneliness is the next stage. It is easy to feel isolated when everyone around you has healthy children and you don’t. I remember feeling like the only parent who had a child in the Vanderbilt NICU, even though every day I walked by the board in the lobby that read “Babies in the NICU today: 77” and passed at least ten rooms with occupied cribs. I also remember feeling like no one would understand if I tried to talk to them. Of course, neither of these was true and it didn’t make sense for me to feel this way, but I couldn’t help it.Finally and hopefully, acceptance will come. This doesn’t mean that you give up and let the cards fall where they may. It doesn’t mean that you let your child fall by the way side because that is just what happens to children with that disability. It means you are ready to stand up and advocate for your child. It means that you have realized that you are strong enough to handle the challenges that will come with raising a child with a disability.
The key to getting through this process successfully is time. It is a process that happens over a period of time and in the course of events that begin the journey of raising a child with a disability.I would like for you to understand the importance of recognizing this mourning process. When a grieving person is angry and you feel like turning away from such an unmanageable person, that is when they need friends and loved ones to hold close and comfort them. When someone is mourning and you can’t understand their feelings and thoughts, it’s not necessary that you understand, only that you be there for them when they need you. Please realize that they are mourning and dealing with their pain as best they can, and they need people to support them and help get them through. It is vital! It may seem like nothing you say is getting through to them or making a difference, and it may not be at that moment, but I assure you, down the road when they remember the kind words you spoke to them, trust me, it will make a difference.
I have discussed only the beginning of the journey that is raising a child with a disability. Next time, I would like to discuss the importance of caring for the caregiver of a child with a disability and further discuss a healthy and proactive management of raising a child with a disability and resources that parents can turn to for help. If you have any ideas, comments, or questions, as always, please e-mail me at firstname.lastname@example.org. Thank you for the opportunity to share my thoughts with you!To end, I’d like to share a quote I recently stumbled upon and I hope it inspires you as it has inspired me: You were given this life because you are strong enough to live it.
Friday, December 2, 2011
I was sitting in my Employment and Labor Law class a few weeks ago at Nashville School of Law when a guy that was close to my age stated, “My wife is an architect. One of the burs in her side when designing, say, a hospital, is that she has to design it so that a blind, deaf, and wheelchair ridden person can get around by themselves in it.”
My jaw dropped. I glanced at the guy to my right, who happened to be in a wheel chair, to see his reaction, then I looked at my friend to my left and said, “How dare a blind, deaf, wheel chair ridden person need to find their way around a hospital!” As you can tell, I was upset by this comment. It was uncompassionate, bred from ignorance, and flat out rude. The guy to my right never even flinched at the remark, which puzzled me for a second, because it was all I could do to keep my composure. As I thought about it later, I wondered why he didn’t react, then it hit me. This probably isn’t the first time he’s heard something so uneducated.
My friends, this is a problem! Let me explain why. Can you put yourself in the shoes, for just a moment, of a parent who has a special needs child? They have to watch their precious baby grow up with difficulties that other children don’t have. They don’t get the normal parenthood experience. Their life is filled with hospitals, therapies, behavior problems that their precious children want a way out of just as much as the parents. Think for just a moment how different your life would be if your only means of mobility was a wheel chair. You can’t just jump and play with your kids, or take a walk with your husband. Go about your daily activities for an hour with a blindfold on and see what it’s like. You must depend on someone else for many, many of your simple daily functions, like getting to work, or putting on your makeup. You don’t know what your daughter’s face looks like because you’ve never seen it.
Now imagine these things, and imagine that while you are dealing with these difficulties and just trying to live and do like everyone else, you are regarded as devalued in society. You are thought of as less important than other people because of something you have no control over and wish you didn’t have to deal with. How do you know you are a devaluation on society? Well, it might be that you heard someone call your child “retarded” or you try to go to dinner and someone makes a nasty remark about your autistic child because he isn’t behaving properly. Or how about, you’re sitting in class and someone makes a statement that people who are deaf, blind, or confined to a wheelchair don’t deserve to be able to get around a hospital like those without a disability.
Living with or loving someone who has a disability is not easy anyways. To go about our daily lives with ridiculing and devaluing language heard about us or those we love makes something that is already painful hurt just a little bit more. Happily, though, I report, there is a solution! It is called People First Language. The whole concept is based on the premise of putting the person before the disability. This is not “political correctness.” This is common courtesy. This is ignorance being replaced by educated people who have enough respect and compassion for human life to think before they speak and make an effort to shape their words in a way that is not hurtful or demeaning!
So let’s practice! Instead of saying, “Disabled” or “handicapped” what do you think would be appropriate? Remember, put the person BEFORE the disability. Saying someone is “disabled” defines that person by their ability, not their actual worth. If you said, “person with a disability” then you are correct. Let’s try another one! What would be appropriate instead of “wheelchair ridden” as my classmate stated? How about “He/She uses a wheelchair for mobility.” PFL even suggests to stop using the phrase “special needs” because it “generates pity and segregation.” Now that I think about it, I have to agree, although I know I use the term often. It has not offended me, but I am going to make an effort to change my language to stop using that phrase!
This isn’t a list of things that we should all memorize so as not offend anyone. Not at all. These are just examples and suggestions of ways that we can take action to positively influence the way people think of those who have a disability. Where our words go, out thoughts will follow. If we begin speaking People First Language, soon it will become natural to us and we won’t even have to think about it anymore. Then, when others hear us speak it, they will begin to understand and change their way of speaking, which will in turn change their way of thinking. This can change the way the world thinks about those who have a disability, one word at a time!Please, please, please visit this website, www.disabilityisnatural.com. It is FULL of valuable information for everyone, including a People First Language chart.
Thursday, December 1, 2011
Some disabilities hinder children from playing in certain ways. For example, a child who can’t walk will not be able to play with a push and pull toy, at least not in the traditional way. A child who is deaf will get little pleasure from a toy whose main function involves music or noise. A blind child will not enjoy a toy such as a mirror. But one thing that disabilities do not do is stop children from playing. Despite any disability, children are still just children who learn by playing and exploring and a disabled child’s need to play is even more important to their development because of the propensity of the disability to slow or prevent their normal progress. When raising a child with a disability, it is a full time job to try to encourage the child to develop those skills that the disability might delay or prevent. Using the right toys is vital in that development. Although some examples as I have listed above are obvious to anyone, it can be hard to determine exactly what toys will promote a disabled child’s development, what toys are appropriate, and which ones they will enjoy.
Fortunately for the disabled community, Toys “R” Us has created a Toy Guide for Differently-Abled Kids. Toys “R” Us has been publishing this catalog since 1995. The name of the catalog itself speaks volumes. It refers to the guide as something for children with different abilities, without including the word disabled. This shows a compassion and understanding that I appreciate, and I’m sure others out there who love someone with a disability would agree. According to the Toys “R” Us website, the guide is a “one-of-a-kind resource [that] speaks to a child’s individual needs and offers qualified toys based on research from the National Lekotek Center, a nonprofit organization that evaluates all of the toys featured in the Guide.”
This guide makes it easy for parents to determine what toys will be appropriate for their special little one. Toys are not divided into categories based on disability. Instead, toys are categorized with symbols that illustrate which skill the toy promotes. For toys that promote auditory learning, the symbol you will find is an ear and sound waves. For creativity, the symbol is a paint palette and brush. The categories include auditory, creativity, fine motor, gross motor, language, self esteem, social skills, tactile, thinking, and visual.
The catalog is put together by experts in the field, so parents can be sure that the toys they purchase based on this guide’s recommendations will help in the areas their kids need. Toys are selected for the guide by the National Lekotek Center, a nonprofit organization that evaluates toys during play sessions and determines which skills it promotes development of. Then it categorizes these toys for children with special needs. The organization has over 30 years of experience in this area and has become a leader in this industry. To learn more about the National Lekotek Center, visit www.Lekotek.org.
Although this guide is created for differently-abled children, I think we can all agree that every child has different abilities and skills, unique personalities, and things that they struggle with. Because of that, this guide is a great resource for all parents, not only those with special needs children. We all want to encourage our children to grow and develop to their full potential, and having the right toys is a great way to help do that. The guide helps parents to pin point the toys that help their child where he or she is struggling. How valuable this is in a world where education and intellect are everything!
To obtain a copy of the guide, you can visit www.Toysrus.com/differentlyabled. You can also send an e-mail to email@example.com to be added to the mailing list. Besides this essential guide, Toys “R” Us is a wonderful advocate for the special needs community, giving grants to nine major special needs organizations including Autism Speaks and Special Olympics just this year. I encourage everyone to take some time to visit the website and support a company who cares so much about the special needs community.
If you every have questions, comments, or ideas, please e-mail me at firstname.lastname@example.org. I would love to hear from you!