Many of us with children know that discipline is an important tool to use while caring for your child. However, special needs children with physical limitations are classified as multi-disabled because of other factors that affect the brains function. This disability has an effect on their cognitive and intellectual abilities to process, store, and receive information or instructions. Cognitive is a term that relates to how the special needs child reasons, uses judgment, and how they process emotions which effects their behavior.
A parent who lacks information on the abilities of their child might consider their behavior to be unchangeable and lack the skills to cope with the behavior. My daughter is classified as multi-disabled and displays many negative behavioral skills, often making it difficult to calm her down, listen, and behave. Granted, as parents we want our special needs child to act as "normal" as possible and become frustrated when they act out. Some might take it personal and consider the behavior a reflection of our lack of being capable of handling our child's behavior. Well smile, because there is HOPE!! First, understand that all living things have the ability to learn, change, and adjust to the environment to which they occupy. While we deal with cognitive limitations due to trauma or no fault of our own, there is a way to help your child better understand and process their feelings and thoughts displayed in their behavior.
I am a firm parent because that works for me. Jordan whines and cries when she is faced with emotions that are hard for her to verbally express. Like most kids, when she doesn't get what she wants she uses whining to express her disappointment. I first had to recognize that Jordan is a teenager who deals with the emotional and physical changes that all teenager experience. She also has a hard time transitioning from one place/thing to another on command. Jordan is also very verbal, and can have a stimulated conversation as long as you keep her on the task/issue at hand. To deal with the whining, my first method is to explain to her that if she is whining I can't understand what is wrong and can not help her. Getting a child with special needs and cognitive/intellectual disabilities to explain what they are feeling takes patience. Her teachers came up with flash cards that show different emotions IE: my afo's hurt, I feel sad, I am hungry, I am frustrated, I am angry, I feel sick.. I ask Jordan to give me the card that shows how she feels and I then proceed to addressing that feeling/emotion. I also give Jordan warnings that if she can't calm down or stop when she's whining, talking out of turn or showing aggression that she will have to be removed from the group until she is ready to join us again. This WORKS!! ;). I use words like stop, listen, and wait to get her to focus on her behavior. I am firm because it works for me. My goal is to not use fear or any other negative action to get her to behave, but to use a firm voice coupled with unconditional love to help her understand what will and will not be tolerated. My objective is to decrease destructive or emotional thoughts that influence negative behavior by helping Jordan to understand that although she may not be able to control every emotion and thought, she can control how she views and deals with her environment that influences her behavior.
I understand that my method may not work for the child who does not process information in the manner to which my child does, but there is still hope. Each child is uniquely designed and deserves to be understood with the terms of their condition. Talk to teachers, caregivers, and behavioral therapist to help you help your child help themselves. Other methods include using a diary/journal to write down feelings and thoughts, yoga to relax, role playing to show them how they sound and look during episodes, and finally medication may be an alternative. The point is, don't look down, but look up! Be strong and know that your child was given to you as a direct reflection of who you are meant to be which is a strong, stern, loving, and caring parent! It will get better!!
Tuesday, January 31, 2012
Friday, January 20, 2012
AFO's/Splints and Shoes
An individual who has cerebral palsy, suffered a stroke, had spinal cord injury, or any injury that effects muscle function often will require orthototics to assist in modifying the structure and function of their foot to enhance the gait and the stability of the foot while walking. AFO's (ankle foot orthosis) are braces that help keep the foot in alignment with the leg.
I have used JK Prosthetics Orthotics Corp. has made Jordan's AFO's since she was a baby. They are contracted with St. Agnes Children's Rehabilitation/John A. Coleman School to measure and provide orthotics for children who require them. They come in different designs and characters according to preference and will replace the braces once they are outgrown.
When Jordan first started wearing AFO's it was difficult to find a shoe that would fit the brace. Often, I was referred to Payless because they had a wide variety of shoes that fit the braces. Jordan would be dressed in fine clothing, but her feet told a different story. Now, I purchase New Balance, Nike, Saucony, Reebok, and other brand shoes in wider widths to fit the AFO's, but still something is lacking. Comfort and flexibility is always an issue because brand shoes are not in the business of designing shoes that fit orthotics. My goal is to change that. Why should individuals who need supportive orthotics be limited to a "inexpensive" shoe made out of material that just don't last? If shoe/sneaker companies are marketing to "everyone" then that includes differently abled population!
I will keep you up to date on letters that I am preparing to send out to these big shoe/sneaker companies to get their attention to shift to populations of individuals with developmental limitations. If you have any stories or advice please reply to the post, I would love to hear your ideas and stories!
Be blessed!
I have used JK Prosthetics Orthotics Corp. has made Jordan's AFO's since she was a baby. They are contracted with St. Agnes Children's Rehabilitation/John A. Coleman School to measure and provide orthotics for children who require them. They come in different designs and characters according to preference and will replace the braces once they are outgrown.
When Jordan first started wearing AFO's it was difficult to find a shoe that would fit the brace. Often, I was referred to Payless because they had a wide variety of shoes that fit the braces. Jordan would be dressed in fine clothing, but her feet told a different story. Now, I purchase New Balance, Nike, Saucony, Reebok, and other brand shoes in wider widths to fit the AFO's, but still something is lacking. Comfort and flexibility is always an issue because brand shoes are not in the business of designing shoes that fit orthotics. My goal is to change that. Why should individuals who need supportive orthotics be limited to a "inexpensive" shoe made out of material that just don't last? If shoe/sneaker companies are marketing to "everyone" then that includes differently abled population!
I will keep you up to date on letters that I am preparing to send out to these big shoe/sneaker companies to get their attention to shift to populations of individuals with developmental limitations. If you have any stories or advice please reply to the post, I would love to hear your ideas and stories!
Be blessed!
Monday, January 16, 2012
In Honor of Martin Luther King
When I think of Dr. Martin Luther King, Jr., thoughts of freedom of speech, the freedom to live, the freedom to choose, and the freedom to be different comes to my mind. I grew up hearing about this great man, my parents honored and respected him in many ways. When the anniversary of his death came, we would all sit and watch actors reenact his life and his untimely death. I recall crying when the part came showing that he had died as if he was a member of my family. I remember feeling confused, anger, sadness, disappointment, happiness, and a sense of pride as I watched the events of his life unfold.
It has been 44 years that Dr. King was assassinated in Memphis, Tennessee on April 4, 1968 however, we celebrate his life on his birthday January 15th. I was obviously not born when King was assassinated, but his dream lives within me. As I learned that there was a possibility that on December 26, 1995 that I would deliver a premature baby I felt a huge sense of confusion and fear. First, this was my first baby and she was not ready to come out yet and I was confused why God was allowing me to experience this ordeal. As the years passed after Jordan was born I felt angry because she didn't walk, she could barely sit up without having support at 9 months old! I was sad for the future of my daughter and disappointed that I couldn't do anything about it but deal with it.
Jordan was different, and that made me a different mom. But, as the years came I matured as a person and as a mother. I began to understand that this was all in God's plan. He presented me with a challenge to take adversity, opposition, setbacks, heartache, disappointment, anger, resentment, guilt, and shame and turn into love, happiness, understanding, commitment, and dedication. I dedicated my life to Jordan and the care of her, the understanding of cerebral palsy, and the commitment to make a change and to get others to understand. I am proud to be her mother, I am proud that God choose me. The condition of cerebral palsy can occur before, during, and after birth which means no child is free, and no parent is safe. Don't get me wrong, I have my moments, and my issues to overcome. But I declared my life to be about a process of change, commitment, and understanding. And THAT is unconditional love!
Just as Dr. King, I have a dream that one day the world will understand more about cerebral palsy and the extensive commitment from professionals and parents it takes to help those effected. My goal is to bring awareness, understanding, and the possibility of limitless resources to help the condition. I hope that one day when somebody sees me walking with the wheelchair that they smile and say "I understand" and not wonder "what happened"? I may not get there, but I've been to the mountain top too, and I see the promises God made for Jordan and for other children and families that live with cerebral palsy. Pray for me, as I pray for you and that God continues to use me for his service, for your service, so that my living may not be in vain!
Enjoy the day!
It has been 44 years that Dr. King was assassinated in Memphis, Tennessee on April 4, 1968 however, we celebrate his life on his birthday January 15th. I was obviously not born when King was assassinated, but his dream lives within me. As I learned that there was a possibility that on December 26, 1995 that I would deliver a premature baby I felt a huge sense of confusion and fear. First, this was my first baby and she was not ready to come out yet and I was confused why God was allowing me to experience this ordeal. As the years passed after Jordan was born I felt angry because she didn't walk, she could barely sit up without having support at 9 months old! I was sad for the future of my daughter and disappointed that I couldn't do anything about it but deal with it.
Jordan was different, and that made me a different mom. But, as the years came I matured as a person and as a mother. I began to understand that this was all in God's plan. He presented me with a challenge to take adversity, opposition, setbacks, heartache, disappointment, anger, resentment, guilt, and shame and turn into love, happiness, understanding, commitment, and dedication. I dedicated my life to Jordan and the care of her, the understanding of cerebral palsy, and the commitment to make a change and to get others to understand. I am proud to be her mother, I am proud that God choose me. The condition of cerebral palsy can occur before, during, and after birth which means no child is free, and no parent is safe. Don't get me wrong, I have my moments, and my issues to overcome. But I declared my life to be about a process of change, commitment, and understanding. And THAT is unconditional love!
Just as Dr. King, I have a dream that one day the world will understand more about cerebral palsy and the extensive commitment from professionals and parents it takes to help those effected. My goal is to bring awareness, understanding, and the possibility of limitless resources to help the condition. I hope that one day when somebody sees me walking with the wheelchair that they smile and say "I understand" and not wonder "what happened"? I may not get there, but I've been to the mountain top too, and I see the promises God made for Jordan and for other children and families that live with cerebral palsy. Pray for me, as I pray for you and that God continues to use me for his service, for your service, so that my living may not be in vain!
Enjoy the day!
Friday, January 13, 2012
Multi-Disabilities and Coping Methods
As a parent of a child with special needs, often the disability is not to just one local area. With cerebral palsy, the brain that controls the coordination of muscles is the primary area affected however, depending on the child you may have other areas that are effected as well. Jordan has cerebral palsy coupled with other disabilities. The damage to her brain not only limited her ability to control her muscles, but it also affected her ability to coordinate and control her emotions.
With that being said, often she has a hard time expressing exactly how she feels and putting it into words. She uses whining or crying to express her disappointment, sadness, and anger making it difficult to communicate. Not just at home, but at school when it is time to transition from the classroom to therapy or some other activity that she might find difficult to do. My method of coping with this is when it occurs, I have to stop myself from becoming frustrated or overwhelmed FIRST. The next step is to attempt to calm her down enough that she is listening. I ask Jordan to use her words instead of whining so that I can help her with whatever is bothering her. When the whining and crying occurs because she can't have her way, I will ask her to calm down and stop whining and use your words. When this does not work, the method I use is removing her from the "group/room" until she is ready to join us again without whining. And believe it or not, it works!!! My methods also includes prayer, music (her favorite) and positive words to push past the moment.
Make sure you access the resources available to you, because I didn't for a long time. I was stubborn and thought I could do it on my own. I didn't want any help because I believed that I could do this. Well to my surprise, I needed someone and quick before it was me who was doing the whining and crying LOL!
Your school has a social worker who can guide you in the right direction. If you don't want to join groups, you can always use one-on-one therapy or family therapy. A behavioral therapist is a professional who can help you with tactics to use as you deal with behaviors that effect your day-to-day activities and hinders communication.
Your child is not being difficult, they just do not have the tools to cope with their behavior. Just be prepared that those tools may involve medication to help which isn't bad, just make sure that every option is exhausted before taking this route.
Be blessed and know that God does not put anything on us that we can't handle. He trusts us, so let's try our best to complete the assignment he placed in our lives!!
Tuesday, January 10, 2012
Littman & Krooks LLP
As parents of children with special needs, we are concerned with the physical and emotional care of our children. Are they getting the appropriate education and therapeutic services; but we need to take this a step further.
As our children grow older, we need to be concerned with issues as who will take care of our child in the event we die or are hurt to the point where we can't care for their daily needs. As parents of children with special needs, we should also be concerned with the financial aspect of our child's life.
Littman & Krooks are special education advocaters, they work with seniors and people with special needs. They will guide you through estate planning, setting up special needs trust for your child and guardianship. They are friendly and caring professionals that have family members who have special needs as well. If they are unable to help, they are qualified to guide you in the right direction. Lauren Mechaly is one their associates and is a great asset to Littman & Krooks.
They were helpful to me when I had concerns about Jordan's education plan and assisted me with my concerns.
Good luck!
Contact them on Facebook and Twitter. Email address is: www.littmankrooks.com
As our children grow older, we need to be concerned with issues as who will take care of our child in the event we die or are hurt to the point where we can't care for their daily needs. As parents of children with special needs, we should also be concerned with the financial aspect of our child's life.
Littman & Krooks are special education advocaters, they work with seniors and people with special needs. They will guide you through estate planning, setting up special needs trust for your child and guardianship. They are friendly and caring professionals that have family members who have special needs as well. If they are unable to help, they are qualified to guide you in the right direction. Lauren Mechaly is one their associates and is a great asset to Littman & Krooks.
They were helpful to me when I had concerns about Jordan's education plan and assisted me with my concerns.
Good luck!
Contact them on Facebook and Twitter. Email address is: www.littmankrooks.com
Sunday, January 8, 2012
Hi everyone,
Here are some great sites that offer a wealth of information and resources:
Disability Resource Guide for those living in Westchester County in New York: http://disabled.westchestergov.com/listed-alphabetically
If your child is interested in extracurricular activites and you live in Westchester County, contact Miracle League of Westchester: http://mlwny.org/
For better understanding of your child's disability try: http://www.mychildwithoutlimits.org/?page=home
As your child reaches teenage years, it is important to know the resources available as they transition to adulthood. Make sure that you register them with the Office for People living with Developmental Disabilities. This will provide services once they reach the maximum services offered at school aged which includes work, and day services. To ensure eligibility, visit: http://www.opwdd.ny.gov
Remember, we all need someone to lean on, someone who understands, and when friends and family are not enough and just don't "get it", other parents in the same circumstance might be the cure. If your local community does not have a parent-to-parent resource try: http://www.php.com/
Here are some great sites that offer a wealth of information and resources:
Disability Resource Guide for those living in Westchester County in New York: http://disabled.westchestergov.com/listed-alphabetically
If your child is interested in extracurricular activites and you live in Westchester County, contact Miracle League of Westchester: http://mlwny.org/
For better understanding of your child's disability try: http://www.mychildwithoutlimits.org/?page=home
As your child reaches teenage years, it is important to know the resources available as they transition to adulthood. Make sure that you register them with the Office for People living with Developmental Disabilities. This will provide services once they reach the maximum services offered at school aged which includes work, and day services. To ensure eligibility, visit: http://www.opwdd.ny.gov
Remember, we all need someone to lean on, someone who understands, and when friends and family are not enough and just don't "get it", other parents in the same circumstance might be the cure. If your local community does not have a parent-to-parent resource try: http://www.php.com/
Saturday, January 7, 2012
Please accept my apology for my lack of attention to what I started so long ago. I had a task to accomplish in the midst of being a parent, and I have completed the assignment. I now hold an Associate of Arts in Communicaton and a Bachelor of Science in Human Service/Management. It was tough, long, and tiresome but with God I kept pushing towards the prize because I knew that he had placed in me a gift through Jordan's disability. My task was to give back to what has given me peace in my life through her.
So hold on and know that God choose you to care for your child with special needs because you too are special. Luke 12:48 says, "To whomsoever much is given unto him, much is required" so get ready because I have aquired some knowledge that I would like to share with you to help you help yourself and your child as you navigate through life. God bless and talk to you soon.
So hold on and know that God choose you to care for your child with special needs because you too are special. Luke 12:48 says, "To whomsoever much is given unto him, much is required" so get ready because I have aquired some knowledge that I would like to share with you to help you help yourself and your child as you navigate through life. God bless and talk to you soon.
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