The year 2012 was an eye opener for me. Often as parents and caregivers of our children or family members with special needs, we often forget about ourselves. I have grown accustomed to forgetting about my own needs as I've met the needs of my children, cared for the home I've provided for them, kept food on the table, therapy services met, bathing, toilet assisting dressing, administering medication, doctors appointments, evaluations, you name it and there I am. All the while, my own issues and grievances are swept under the carpet to collect dust. I tell myself, there are no time for tears, no time to be idle and certainly no time to worry.
I have a mission to bring awareness to cerebral palsy and developmental disabilities however, there is one area that every parent needs to be aware of, and that is the well being and nurturing of your mind, body and soul! Don't forget that you too are human... I want each of you to take one or two of these helpful hints and find ways to cater to YOU:
1.Develop an OPEN and HONEST relationship with God!
2. Open your mind to expect the great by preparing yourself mentally to receive whatever it is.
3. Embrace assistance from family members and friends (especially for my single parents).
4. Use your resources for respite care and in-home-assistance (Home Health Aide).
5. Find you a secret place.
6. Write in a journal or blog.
7. Don't be afraid to say NO.
8. Get tough, tell that person how much they hurt you.
9. Yell
10. Cry for no good reason.
11. Share your thoughts with local groups.
12. Learn to let go of what you can't change.
13. Remember, you deserve love, affection, and attention too!
14. Accept your flaws and all, nobody who walks this earth is perfect.
15. Make a plan, and follow through till the end.
16. Stop blaming yourself for your child or family members disabilities.
17. Use every negative offense as an opportunity for positive energy.
18. Believe someone when they show you who they are the FIRST time.
19. Tell yourself, "Things are going to get better".
20. God is not trying to hurt you because of the disability, but clearly to perfect your character!
Ready or not, 2013 is less than 8 hours away, although there may not be enough time to accomplish every item on the list, remember that you are important and needed, and will not be forgotten by God! May this year be the year of great things for each of you and your families! I look forward to sharing the website with you all when construction is complete, be sure to look out for us as we strive to meet the needs of families and parents of children and individuals with cerebral palsy and developmental disabilities! www.successwithspecialneeds.com
Love you all!
Shannon
Monday, December 31, 2012
Sunday, April 29, 2012
Are you prepared for the future?
Hi friends and family,
I have been pondering a lot about what will happen when Jordan ages out of school aged services. Where will she go during the day? Who will provide therapeutic services to meet her physical needs. Will she have friends? Will she be lonely? What if something happens to me? Who will take over my duties? How will she earn a living? Who will take care of her? All these and so much more are daily questions that I ask myself constantly.
Let's face it, although we are born to die, there are other events that could occur which could leave you questioning your future or the future of your special needs family member. The first step is to have a social worker or a service coordinator who will provide services offered to meet their needs. Make sure you hold on to all documents pertaining to their condition and diagnosis. This will help find the appropriate program that will best suit the needs which should be available in annual IEP reports provided by your school district. Your local county's office for mental health are a great resource to use if your lost. Although your family member may not be mentally or physically to care for themselves, if you don't transition their insurance you may not be eligible to receive help in the home if needed, respite care, family support services, day habilitation, family reimbursement, and recreation. You will need a lawyer or someone who can provide estate planning to ensure your involvement in your family members needs, but primarily to ensure that they do not loose any services because of income guidelines.
Have you ever been to Walmart and greeted by individual in a wheelchair? His or hers direct connection to Walmart are from the efforts of agencies and organizations that provide work for the developmental disabled population. I will soon face this and the preparations involved tugs at the heart, and brings out the practical side within me. However, what must be done must be done to ensure that the charge God placed in my hands will go to a trustworthy source who will care for my daughter.
The web site coming will provide more detailed description and a check list of what to do for the future. Until we meet again, God bless during your preparation for the future!
I have been pondering a lot about what will happen when Jordan ages out of school aged services. Where will she go during the day? Who will provide therapeutic services to meet her physical needs. Will she have friends? Will she be lonely? What if something happens to me? Who will take over my duties? How will she earn a living? Who will take care of her? All these and so much more are daily questions that I ask myself constantly.
Let's face it, although we are born to die, there are other events that could occur which could leave you questioning your future or the future of your special needs family member. The first step is to have a social worker or a service coordinator who will provide services offered to meet their needs. Make sure you hold on to all documents pertaining to their condition and diagnosis. This will help find the appropriate program that will best suit the needs which should be available in annual IEP reports provided by your school district. Your local county's office for mental health are a great resource to use if your lost. Although your family member may not be mentally or physically to care for themselves, if you don't transition their insurance you may not be eligible to receive help in the home if needed, respite care, family support services, day habilitation, family reimbursement, and recreation. You will need a lawyer or someone who can provide estate planning to ensure your involvement in your family members needs, but primarily to ensure that they do not loose any services because of income guidelines.
Have you ever been to Walmart and greeted by individual in a wheelchair? His or hers direct connection to Walmart are from the efforts of agencies and organizations that provide work for the developmental disabled population. I will soon face this and the preparations involved tugs at the heart, and brings out the practical side within me. However, what must be done must be done to ensure that the charge God placed in my hands will go to a trustworthy source who will care for my daughter.
The web site coming will provide more detailed description and a check list of what to do for the future. Until we meet again, God bless during your preparation for the future!
Monday, March 5, 2012
Website Coming Soon!!!
Hello everyone,
I just wanted to take the time out to let those who have subscribed to my blog and those who follow me on Twitter and Facebook know that I have created my web page! I am excited and will be working on providing you with the best information, stories, and resources for you to have success with special needs!
The name of the site will be Success With SpecialNeeds. I look forward to sharing and learning with you all.
Love ya'll,
Shannon
Thursday, February 23, 2012
Get the Best Education for Special Needs Individuals
I love to witness and hear about the cultures of other countries. I find it fascinating to see how children are raised, the values that are instilled within the family unit is amazing and very disciplined. While watching CCTV a special called "Rediscovering China" came on where the focus was on school aged children and up. From kindergarten age, the children are taught to be self-sufficient, learning English, the culture and history of China,foreign policies, music, math, and so much more. Students are influenced by society and prepared for social awareness which is mandatory in China as a part of their reform policies. Amazingly, all of the kindergartners excelled in English, math, and social skills to prepare them for society outside of China to ensure career success. Every family member/unit/caretaker of the child played a major role in the child's life to reach their goals.
I found it amazing how at such a small size and young age that with discipline and well-rounded routines, that these children adapted to what they were taught and really enjoyed every routine enforced. As they began to interview some of the children asking what they were learning, their response and use of words were way beyond their age. It was not that the parents did or did not want to influence their child, but it was more of a public policy for China.
This did not make me feel that the United States does not produce the same results, but the dedication of the government and the families for their children to be the best and excel is something to take in. China's education system is a major aspect to daily living in China and has been expanded giving China's rate of attendance at 99%. However, in New York, the educational programs are cut to fund other programs which decreases the amount of innovative teachers to teach, and increases the over crowded classrooms because of the lack of funding to expand. As a parent of a child with special needs, my job is to use my resources, form of discipline, and knowledge as a tool to challenge Jordan to maximize her potential. If programs are cut in New York, this means that special education is usually the first to feel the effects making it hard for special education teachers to teach and the implementation of programs to develop new methods.
As parents of special needs children it is important to access your child's capabilities and push them to reach their limit. This can be done when you as a parent teach outside of the classroom because you as the parent are the first teachers. Find innovative methods to develop ways to help your child learn to communicate better and stay on their targeted goals. Attend IEP meetings because your opinion counts! If there is a method that you use to help your special needs child attain goals and learn; feel free to share them with their teachers. It takes discipline and consistency to reach success, but their is success in education and in methods of learning for individuals with special needs. Don't accept anyone telling you that your child cannot learn when you know better. Special needs or not, all children have the potential to learn when they have dedicated teachers and parents. Our government system and the influence that it has on education should not stop your success with your special needs child. When you reach beyond the resources and develop creative methods to maximize your child's learning potential, you will have success. Take a moment to look at your state's plan for education and how you can help make a difference. Until then, be blessed!
I found it amazing how at such a small size and young age that with discipline and well-rounded routines, that these children adapted to what they were taught and really enjoyed every routine enforced. As they began to interview some of the children asking what they were learning, their response and use of words were way beyond their age. It was not that the parents did or did not want to influence their child, but it was more of a public policy for China.
This did not make me feel that the United States does not produce the same results, but the dedication of the government and the families for their children to be the best and excel is something to take in. China's education system is a major aspect to daily living in China and has been expanded giving China's rate of attendance at 99%. However, in New York, the educational programs are cut to fund other programs which decreases the amount of innovative teachers to teach, and increases the over crowded classrooms because of the lack of funding to expand. As a parent of a child with special needs, my job is to use my resources, form of discipline, and knowledge as a tool to challenge Jordan to maximize her potential. If programs are cut in New York, this means that special education is usually the first to feel the effects making it hard for special education teachers to teach and the implementation of programs to develop new methods.
As parents of special needs children it is important to access your child's capabilities and push them to reach their limit. This can be done when you as a parent teach outside of the classroom because you as the parent are the first teachers. Find innovative methods to develop ways to help your child learn to communicate better and stay on their targeted goals. Attend IEP meetings because your opinion counts! If there is a method that you use to help your special needs child attain goals and learn; feel free to share them with their teachers. It takes discipline and consistency to reach success, but their is success in education and in methods of learning for individuals with special needs. Don't accept anyone telling you that your child cannot learn when you know better. Special needs or not, all children have the potential to learn when they have dedicated teachers and parents. Our government system and the influence that it has on education should not stop your success with your special needs child. When you reach beyond the resources and develop creative methods to maximize your child's learning potential, you will have success. Take a moment to look at your state's plan for education and how you can help make a difference. Until then, be blessed!
Wednesday, February 15, 2012
"You were Created for Victory"- Pastor Michel White-Haynes
Pastor Michel White-Haynes, Pastor of Greater Faith Temple Church of the Living God in the Bronx, NY is someone who has known me since I've been in my mother's womb. She too is disabled being born with one arm. However, her reflection shows nothing that she has been through. An inspiration to many; I listened as she delivered an inspirational testimony telling her congregation that they were created for victory and immediately felt the need to recriprocate what I received from that message to you.
When Jordan was born, all was well with her physical appearance. The complications of her premature birth was camouflaged by the stages of infancy. Because she had no "physical" deformities, I was able to not address the fact that she indeed was born with a disability. However, as she began to grow, the physical characteristics of cerebral palsy began to set in place. She developed strabismus in her right eye which caused her right eye to drift, but because it has not been consistent, she never required surgery. I often laugh when she is thinking hard about what you said or what she is going to say because the right eye is a tell sign. I can laugh about it now, but before it was no laughing matter. Because of the type of cerebral palsy that Jordan has, it prevented her from sitting up on her own, crawling on all fours without guidance, and inevitably not walking on her own with assistance, and this I could not hide. Next came the adaptive high chair/trip trap chair, the wheelchair, then the walker. The secret was out, my daughter was different!
In the beginning I pretended that it was okay, but deep down I was dealing with so many emotions that I didn't want to show. Eventually, I made a decision that if she was going to wear braces on her feet, I made sure the shoes were stylish and fashionable. I purchased her top of the line clothes, and her hair was done at all times. I made a decision that if this was what God had given me, then I was going to break all stereotypes of disabled persons and raise her to be phenomenal! I loved music, so I had her singing, eventually she developed a gift to hear a song one time and memorize the vocals and the instrumental. She knew the sound of the bass, the guitar, the organ, the piano, the violin, and the saxophone. When the doctors said she would have speech problems I began teaching her how to read, how to pronounce words, when she didn't get it right I made her do it over until she maximized her potential. I told her she was beautiful, smart, and wonderfully made. I refused to treat her different and challenged her to be better. I noticed that when sharing her disability with a stranger or someone I haven't seen for awhile I often heard them say, "I'm so sorry" and without I beat I'd reply, "Why? I'm not". If this was what God said, then I was going to have victory and success with her and with her special needs. When I fell, I picked myself up before anyone could see the dust. When I cried, it was in my secret place. And it wasn't because I was ashamed to show that I was human, but it was my way of coping with the task at hand.
It is a shock for a parent to know that their child will not run with the other kids and will have to do things different. But I always felt that I was different, so it came as no shock that God gave me a different child. And don't get me wrong, it hurt! But I refused to to fail, so I pushed past my ego and my pride and found strength in the gifts that he gave me and used them to bring out the greatness in my daughter that he already instilled. Sure I went through denial, regret, and embarrassment because I am human and I was being processed to let you know that there is success with special needs. Don't allow your special needs child circumstances determine your life, use it as tool to reinvent yourself! The disability will not disappear but what you do with it as a parent will determine victory and success for you child. So be different, I love it, and when you come to accept the task placed in your life that was no mistake you will begin to love it too!
Nothing comes easily, and we all have our own cross to bear. As Pastor said, "I was born for this" I concur! Because I was born for this, and Jordan was created for victory! Reach out and find someone to talk to if you need help accepting your child's condition. Wherever you may reside, there are resources available to you and your child to help you as you journey to victory. Take advantage of help; don't be stubborn they way I was thinking I could do it all LOL, trust me maybe not now, but you WILL need some help and it is okay! And remember, different does not mean denied. You can have success with your special needs child when you accept and know that both of you were created for victory! Thank you Pastor White for the inspiration and the confirmation!
When Jordan was born, all was well with her physical appearance. The complications of her premature birth was camouflaged by the stages of infancy. Because she had no "physical" deformities, I was able to not address the fact that she indeed was born with a disability. However, as she began to grow, the physical characteristics of cerebral palsy began to set in place. She developed strabismus in her right eye which caused her right eye to drift, but because it has not been consistent, she never required surgery. I often laugh when she is thinking hard about what you said or what she is going to say because the right eye is a tell sign. I can laugh about it now, but before it was no laughing matter. Because of the type of cerebral palsy that Jordan has, it prevented her from sitting up on her own, crawling on all fours without guidance, and inevitably not walking on her own with assistance, and this I could not hide. Next came the adaptive high chair/trip trap chair, the wheelchair, then the walker. The secret was out, my daughter was different!
In the beginning I pretended that it was okay, but deep down I was dealing with so many emotions that I didn't want to show. Eventually, I made a decision that if she was going to wear braces on her feet, I made sure the shoes were stylish and fashionable. I purchased her top of the line clothes, and her hair was done at all times. I made a decision that if this was what God had given me, then I was going to break all stereotypes of disabled persons and raise her to be phenomenal! I loved music, so I had her singing, eventually she developed a gift to hear a song one time and memorize the vocals and the instrumental. She knew the sound of the bass, the guitar, the organ, the piano, the violin, and the saxophone. When the doctors said she would have speech problems I began teaching her how to read, how to pronounce words, when she didn't get it right I made her do it over until she maximized her potential. I told her she was beautiful, smart, and wonderfully made. I refused to treat her different and challenged her to be better. I noticed that when sharing her disability with a stranger or someone I haven't seen for awhile I often heard them say, "I'm so sorry" and without I beat I'd reply, "Why? I'm not". If this was what God said, then I was going to have victory and success with her and with her special needs. When I fell, I picked myself up before anyone could see the dust. When I cried, it was in my secret place. And it wasn't because I was ashamed to show that I was human, but it was my way of coping with the task at hand.
It is a shock for a parent to know that their child will not run with the other kids and will have to do things different. But I always felt that I was different, so it came as no shock that God gave me a different child. And don't get me wrong, it hurt! But I refused to to fail, so I pushed past my ego and my pride and found strength in the gifts that he gave me and used them to bring out the greatness in my daughter that he already instilled. Sure I went through denial, regret, and embarrassment because I am human and I was being processed to let you know that there is success with special needs. Don't allow your special needs child circumstances determine your life, use it as tool to reinvent yourself! The disability will not disappear but what you do with it as a parent will determine victory and success for you child. So be different, I love it, and when you come to accept the task placed in your life that was no mistake you will begin to love it too!
Nothing comes easily, and we all have our own cross to bear. As Pastor said, "I was born for this" I concur! Because I was born for this, and Jordan was created for victory! Reach out and find someone to talk to if you need help accepting your child's condition. Wherever you may reside, there are resources available to you and your child to help you as you journey to victory. Take advantage of help; don't be stubborn they way I was thinking I could do it all LOL, trust me maybe not now, but you WILL need some help and it is okay! And remember, different does not mean denied. You can have success with your special needs child when you accept and know that both of you were created for victory! Thank you Pastor White for the inspiration and the confirmation!
Tuesday, February 14, 2012
Special Love on Valentine's Day!
As a little girl, my first experience with love was the love of my parents. Of course at the time I didn't know that the feeling was called love. I loved my dolls, I loved music, I loved my sisters, I loved peanut butter and jelly sandwiches, I loved God, and I loved going to church. I believed in true love, and love at first sight, but it wasn't until I actually saw my daughter after she was born did I really know what unconditional love is. The kind of love that God has for all his children, is the love I felt when I gave birth to my daughter. I loved and feared her at the same time because of the sudden premature birth which I knew nothing about. I looked at Jordan and I didn't see the things which were to come, but I saw a beautiful tiny baby with strength in her eyes and in her grip. She was a fighter with determination etched all over her face. She never wavered and continued to grow as I prayed and stayed by her side in the NICU. I had no idea about developmental disabilities nor cerebral palsy, but I did know that I would never leave her side no matter the outcome. It has been 16 years since that first feeling of love and I must say that besides the love that Christ has for me and I for him, there is no greater love! My daughter Jordan represents the meaning of Valentine's Day 365 days of the year. She may not be perfect or even look perfect, but the fact of the matter is that God thought we were perfect for one another. So I'll take the wheelchair, the walker, the surgeries, the behavior, the unknown to come everyday because it is in her perfect smile, that I find the greatest Valentines gift of all. May today and everyday be Valentine's Day for you and your special needs child or family member. My prayer for you is that you find ways to find love in all the imperfections and trials that you face because it will perfect your character! Happy Valentine's Day to every special needs family and remember you are loved!!
Sunday, February 12, 2012
The Future is Near
Recently I received a letter stating that Jordan was OPWDD (Office for People with Developmental Disabilities) eligible to apply for services offered by agencies committed to the advancement of people with developmental disabilities. OPWDD provides support to people with developmental disabilities the opportunities to receive support in thoughts and feelings and access to their desires and needs. OPWDD connects individuals with disabilities the opportunity for independent living either own their own or in residential facilities. They also provide resources for jobs to become active members of society.
This letter came as a bitter-sweet feeling because for one, my daughter was becoming of age and I have watched her grow right before my eyes. Letting her venture out and find her own is hard pill to swallow because I want to be there for everything, protecting her and guiding her, and although I know I will always be in the process it still made me feel like I was receiving word to begin to let her go a little. Just as the parent with children without any developmental needs feels when their child is about to go off on their own is the same feeling I had. Looking beyond the bitter, the sweet is that Jordan will now have opportunities to work, participate in programs outside of school that will enhance her social skills by developing friendship and experiences.
It is unfortunate that many parents are unaware or do not utilize services to maximize the growth and potential of their children with special needs. While Jordan was in early intervention programs she received social worker, therapy services, assistive technology devices, and nursing services. The social worker made herself available to answer any and every question I had, she outsourced if needed as well. All of Jordan's needs were met with a plan and was fairly easy because those are the services offered within early intervention. But I must admit, when she reached school age it was if I had a carpet snatched from under my feet and pushed to find these services outside of school. It was tough and for years because my pride wouldn't allow me to reach out for help, I handled everything on my own outside of the classroom.
If I had any advice in this area, it would be to open yourself up to what is available for you to receive for your child. Put away pride and embarrassment because this is equally important for you as the parent and for the child transitioning beyond school age. Call your local Department of Community and Mental Health who will direct you through the process. Westchester County Department of Mental Health provided a tremendous amount of help in accessing documents and forms needed to apply. Keep the originals of birth certificates, medical records, IEP reports, psychological evaluations, social security cards, and any other document that could be used to determine that your loved one is disabled.
Remember that your child can only stay "little" but for so long. Eventually, you will need help (take it from me) and the help is there for you to use. Preparing for the future is vital to how your loved one is cared for in the event you are no longer able to care for them because of sickness, or death. I was so emotional when faced with the question "what are your plans for Jordan in the event you die"? It wasn't that I didn't have a support system, but nobody and I mean nobody is going to love and care for her the way mommy does, and it hurt my core to even think of not being here with my child. However, reality quickly set in because I believe we are born to die, however what we do while we are here will be left up to us. Take the time to research areas of estate planning and services to transition your child into adulthood. Take care and may God bless you!
This letter came as a bitter-sweet feeling because for one, my daughter was becoming of age and I have watched her grow right before my eyes. Letting her venture out and find her own is hard pill to swallow because I want to be there for everything, protecting her and guiding her, and although I know I will always be in the process it still made me feel like I was receiving word to begin to let her go a little. Just as the parent with children without any developmental needs feels when their child is about to go off on their own is the same feeling I had. Looking beyond the bitter, the sweet is that Jordan will now have opportunities to work, participate in programs outside of school that will enhance her social skills by developing friendship and experiences.
It is unfortunate that many parents are unaware or do not utilize services to maximize the growth and potential of their children with special needs. While Jordan was in early intervention programs she received social worker, therapy services, assistive technology devices, and nursing services. The social worker made herself available to answer any and every question I had, she outsourced if needed as well. All of Jordan's needs were met with a plan and was fairly easy because those are the services offered within early intervention. But I must admit, when she reached school age it was if I had a carpet snatched from under my feet and pushed to find these services outside of school. It was tough and for years because my pride wouldn't allow me to reach out for help, I handled everything on my own outside of the classroom.
If I had any advice in this area, it would be to open yourself up to what is available for you to receive for your child. Put away pride and embarrassment because this is equally important for you as the parent and for the child transitioning beyond school age. Call your local Department of Community and Mental Health who will direct you through the process. Westchester County Department of Mental Health provided a tremendous amount of help in accessing documents and forms needed to apply. Keep the originals of birth certificates, medical records, IEP reports, psychological evaluations, social security cards, and any other document that could be used to determine that your loved one is disabled.
Remember that your child can only stay "little" but for so long. Eventually, you will need help (take it from me) and the help is there for you to use. Preparing for the future is vital to how your loved one is cared for in the event you are no longer able to care for them because of sickness, or death. I was so emotional when faced with the question "what are your plans for Jordan in the event you die"? It wasn't that I didn't have a support system, but nobody and I mean nobody is going to love and care for her the way mommy does, and it hurt my core to even think of not being here with my child. However, reality quickly set in because I believe we are born to die, however what we do while we are here will be left up to us. Take the time to research areas of estate planning and services to transition your child into adulthood. Take care and may God bless you!
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