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!

"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!

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!!

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!

Accepting the Diagnosis

The first time I heard the word cerebral palsy was from the Chief of NICU at the hospital Jordan was born at. I was confused because I couldn't think of anyone or anything associated with cp except for Jerry Lewis. I had so many questions but found myself listening and absorbing all this new information. It was scary and overwhelming and I felt that I was out of my comfort zone as I thought I knew it all. I remember walking through the doors of St. Agnes Children's Rehabilitation in White Plains, NY for the first time and feeling overwhelmed and shocked by what my eyes saw.

There were children without limbs, children in support devices that I'd never seen; surely we were in the wrong place! When the time came for me to ask questions, my first question was "how long does she have to be here?" It wasn't that I did not believe there were issues to address concerning Jordan's physical limitations; I just did not feel that she should be there for an extensive period of time. Notice I said "feel" and not believe? Because what I felt, was far from the fact of the matter which was Jordan was similar if not the same as many of the other children at St. Agnes.

My faith in God granted me permission to ask him to heal my daughter and I lived off that hope that her healing would make her whole, her healing would give her the use of her limbs. I was praying, fasting, asking people to intercede for me, but nothing PHYSICALLY changed.

Once I began to notice that this condition wasn't going anywhere, and that I couldn't camouflage it with wittiness was when I realized that God heard my request and it wasn't Jordan who needed healing but myself. It was then when I began to submit to the issue and allow the tears to flow as I accepted cerebral palsy into my life.

Accepting what is not the "norm" or different is a daunting task for individuals who have lived a "normal" life and it comes as a shock to their system of beliefs. Shame, pride, and denial all become the factors that can keep you from seeing the bigger picture before you. But I am here for you to let you know that this pattern of thought can only lead to destruction and the hindrance of the child's progression and success with their disability. Your child holds the lock, but you and his or hers team of professionals hold the key. And acceptance is the first tool to better understand your child's condition by seeking the appropriate resources connected to their condition. You are not alone because I stand with you. If God's plan speaks life, then you will succeed. It may not sound good what the professionals are telling you, it may not even feel good for you nor your loved one but it is for your good. Don't deny your child the assistance they need to maximize their growth. A change will come and not just for them, but for you too! Take care till next time.

Seclusion to Inclusion

I can remember Jordan and all the events that occurred around her age of one years old. It was a period when her diagnosis was undetectable to those who didn't know. She was visibly a healthy beautiful one year old little girl. We had play dates, walks in the park with other moms, birthday parties, and events to attend. Jordan received all the love and attention that any child could possibly receive; as I clanged to hope and faith that God would grant my request and give my daughter the opportunity to crawl and walk. As Jordan grew and the years passed, I was unable to camouflage the condition to which we faced. I was a parent of child who did not walk alone without assistance. As I dealt with the emotional acceptance of her condition, time kept on moving and the equipment kept coming. There was no way I could cover her condition when walking with a wheelchair and the physical features became more profound. I found myself faced with reality; ready or not!

I began to notice subtle changes in where we were invited to, limitations to wheelchair/disability accessible venues. And although Jordan's condition had an effect on her communication, she can have a direct conversation, answer questions, and be engaging when focused; however she is echolaic (repeating phrases/conversations) and easily distracted. This limited her contact with others outside of the world of cerebral palsy and developmental disabilities. It was as if we were secluded from the norm and limited to the disabled world.

One of my goals is to obtain seclusion to inclusion in the lives of children/adults with disabilities. Many are confined or feel left out because of their physical limitations. This must change as we strive to become a society that includes all in spite of differences. While the law requires that stores and facilities accomadate those in wheelchairs are provide access to venues, the inclusion needs to go further. This is where awareness of cerebral palsy should become a priority to those effected by the condition. Technology have designed devices that best suite the disabled, but the prices are far higher than a device for someone without limitations. Does this mean we have to pay for having a disability? Shoe manufactures should design shoes marketed to those in need of orthotics. And the list continues in many areas in society. I will admit that there has been progress, but the message can go further.

Different is okay, but to feel left out is not. Let's press forward to change!

Baclofen and Cerebral Palsy

Cerebral palsy is a disorder that affects body movement, coordination, balance, and posture in individuals who have suffered brain paralysis/brain damage within areas of the brain that controls our muscles and movement. The damage can occur during, before, or after birth causing developmental delays. These delays can affect how bones form, vision, digestion, eating, dental, walking, speech, swallowing, as well as learning disabilities.

Depending on the severity of the damage, individuals cerebral palsy can range from mild to moderate making it hard to "see" that a person indeed has cp. There are various types of cp identified by what area of the body has the most damage from the paralysis. A large percentage of cp cases involved individuals who have spastic quadriplegia (increased muscle tone/tightness/jerky movements) the cp is profound in the entire body.

Because Jordan has spastic cp she was given Baclofen; a muscle relaxer to control the movements and the pain accompanied with having tight muscles. In the beginning, baclofen did exactly as the warnings stated which were drowsiness and dizziness. She was falling asleep in school and going to bed shortly after taking the dosage. As the months went by, I noticed a change in her muscle tone and she began to loosen up in the hamstrings area, and in her lower legs. She began to extend her gait more and there was a difference. However, the drowsiness and dizziness decreased and I began to wonder if she was becoming immune to the drug; is it really working?

We just had our 6 months re-check for services, and the doctor increased the baclofen because she noticed Jordan was still tight. We talked about botox which is usually administered when the individual is younger because the effects lasts longer. The doctor ordered a kidney test because baclofen in broken down within the kidneys and as we grow, our kidneys slowly began to decline. Baclofen side effects also includes seizures, nausea, vomiting, and low blood pressure. My first reaction was "Oh lord and whoa" because of the increase in dosage she ordered. But this just comes with the territory. Don't be afraid of medication because often it is necessary to treat the condition, but as a parent we don't want our child's behavior changing or the possibility of one of the side effects effecting our child. Make sure you monitor all changes, keep a journal if possible to record the slightest thing. Be sure to communicate with your practitioner because you are the person with the child the most. Don't be afraid to speak up, your words are important and can mean a world of difference in how the professionals will diagnosis. Your opinion, and observations are not only important, but they are needed to fully see the big picture your child is showing. Trust God, yourself, and the professionals he called to assist your through this and all things will work together. Be blessed.