Almost Every Fifth Child in the US Suffers From Some Form of Disability – Can We Help?

November is a month of giving, which, of course, comes in so many different forms: From writing a check to volunteering your time or even just finding a place in your heart for someone with special needs.

Doctor Rada Sumareva, New York, decided to do all of the above. Over 12 years ago she gathered a group of mind-like professionals, those who shared her wish to give, including most recently, to improve quality of life of special needs patients. “At RADA, Russian American Dental Association, we place an emphasis on a concept of sharing. There are hundreds of organizations designed to provide help to those who need it most, however there is no real and working system of referrals among the organizations, thus patients always get only fragmented information about help that is available. We’re trying to foster closer relationship between the organizations, not only nationwide, abroad as well; share experiences, try to implement in the U.S. what has proved to be success in Eastern Europe or Middle East.”

Echoing the challenge Doctor Sumareva has voiced, Yekaterina Konovalova, M.S. speech-language and feeding therapist through the Early Intervention Program says, “The only clinic we’ve referred so far meant a long commute for my patients.” Through attending RADA Special Care for Special Needs Campaign round table last week Yekaterina got contacts for more clinics, specializing in providing medical care to kids with different forms of disabilities.

Here is another example of how little we know about programs designed to help: Over half a million New Yorkers pass by Coalition of the Concerned Medical Professionals building in Brooklyn every week and most of us probably don’t know that the organization advocates for uninsured population in need of medical care, without ever asking about immigration status of the patient. “We do all it takes, to the extent of delivering fresh fruits and vegetables, because if we want to address diabetes in Brooklyn and Queens, that’s what it takes”, shares Elizabeth Stevens, President of the Coalition of the Concerned Medical Professionals.

One more important concept implemented by RADA is focusing on abilities rather than disabilities. It sounds like such a human thing to do, yet somehow we get so absorbed by dealing with “disabilities” that forget about people behind the word. Award-winning jazz pianist, Justin Kauflin, whom you might know from documentary, “Keep On Keepin’ On,” was genuinely touched, touched to tears when he first heard from Doctor Sumareva that RADA’s focus is on abilities. Justin began his musical journey at age 4 and by age of 6, was performing in concerts, nursing homes and weddings, eventually becoming concertmaster for several orchestras. Sadly, it was during this time he also lost vision due to a rare eye disease. The total blindness however didn’t stop the 11 years old boy from exploring the world of music further and building up his carrier. My guess, a good number of jazz lovers really grateful for his courage.

“They looked at me, but only saw my wheelchair,” remembers Vlady Gurari, Esq. It took Vlady 2 years, after receiving degree in law, to find a job. For the first year and half he would send out about 20 CVs each day, honestly mentioning his disabilities in the resume. Not a single respond came through. Then he decided not to mention his health condition at all, and thus he would get appointments. However once potential employers would see his wheelchair, the questions asked during the job interviews would have no relations to his profession and it was obvious they are not going to hire him. Now Vlady works as a Counsel on Government Relations and Regulations Hivrat Hashmal, Israel and his boss told him once, “When you work, I don’t see your disability.”

Third concept RADA has been successfully implementing is encouraging students to get involved in charity work. Doctor Sumareva convinced, “It’s pretty straight forward really, if youth don’t get involved today who we would count on to continue our work in the future? Besides kids are very talented, they have these wonderfully creative and bright ideas. One example is our Special Care for Special Needs video-promo that was compiled by a 15 years girl. It’s heartwarming and inspiring.”

Rachel Motsenyar also joined RADA Special Care for Special Needs Campaign round table last week. Rachel is a currently a student and spends her breaks between semesters working at Camp HASC to brighten up days of kids and adults with special needs, “Giving truly feels like receiving to me, it’s very fulfilling. I joined the Special Care for Special Needs discussion to see if I can be of a help somehow. Perhaps there are also some collaboration opportunities for our organizations; maybe we could host a fundraising together as well.”

Even though there are thousands of initiatives exist, public awareness of life and needs of people with limited abilities is still largely lacking. This is to say if you know anyone who is in need of special care or their relatives and friends are in search of advice and direction, please be sure to refer them to http://www.russiandentists.org Despite the fact RADA doesn’t raise as much money as, let’s say, Red Cross, the association might be much more resourceful at a given situations thanks to a zero administrative cost and network of professionals who volunteer. This is to say if you would like to contribute, volunteer or have an extra space for a person in need in your heart, you now know one more place to go.

Is It Fair to Keep a Severely Disabled Child Alive?

Most are aware of the baby who died in England this week after appeals by the parents who fought to keep him alive. The facts are what were they really trying to achieve? While no one wants to see their infant taken surely one must look to the future to understand the life that one would live. There is also the question of who would look after him when the parents are no longer in a position to provide for him?

In New South Wales there is a huge reaction to the government’s decision to privatise group homes in which severally disabled people are housed. This presents the other side of the debate.

Handicapped children are usually placed in homes designed to look after them. Parents on the average can’t cope with the demands of such a child, let alone when he or she grows into adulthood.

The weight of a handicapped person who has no ability to move without support and cannot even use a toilet without help is impossible for aging parents to manage. They are dependent on providers who can deal with this. So why are these people allowed to live when death in early life would, surely, be a better option?

Religious principles are at stake here if children are allowed to die because of a handicap. Then there is the measure of disability and the arguments of right and wrong would stir the population even further. One can see that by the level of support from the public for the parents of the above mentioned child who died just before his first birthday.

This is an issue communities need to come to terms with especially as the cost of long-term care for such people is growing out of proportion. The bottom line is what kind of life does such a person live. If there is no possibility of a life beyond requiring someone to do every task for them is it such a bad thing for the parents to surrender them to their fate.

Keeping children alive on life support and being caught up in the emotions of the moment is not practical. The question is who is to decide when life is not worth living? It is surely too big an issue for even a court to rule over. It takes this into the realm of mercy killing and the awful consequences of thinking one has made a mistake. This is a test for all and only when one knows all the circumstances can such a decision be made.

Parenting a Child With a Disability and Honest Communication – Do You Ever Get Sad?

We were ready for a weekend away. A team of moms had gone out of town to do a presentation at a conference. For a few of the ladies, it was the first time away from home and needless to say, they were a bit apprehensive about leaving their family.

For one mom in particular, there was a concern for her son who had Autism and a seizure disorder. He had not had a seizure in over a year so she was confident that he wouldn’t have one while she was away. At the same time, she was anxious of the chance that he would have one while she was away. She carried most of the responsibility for matters related to her son’s health and she didn’t want her husband to feel stressed if a seizure did occur.

On the last day of the conference she received a call from home. The worry in her voice told us that something was wrong. Her husband called to let her know that indeed, their son had a grand mal seizure. With patient expertise, she guided him on what to do until she returned home the next day.

We could sense her grief and she expressed her feelings of guilt and remorse for not being home when it happened.

A couple of days after our return home I called the family to see how their son was doing. Mom was out with one of her other children so I spoke to dad. He said that his son was slowly feeling better however he was very tired and lethargic.

Then he said, “Can I ask you a question?”.

“Of course”, I responded.

“Do you ever get sad?”, he asked.

“Sad?”, I repeated.

“Yes, do you ever get down or depressed?”, he inquired.

“Well, I feel helpless when my son is ill and I do get sad sometimes, yes.”

“Okay”, he replied, “Because last night I didn’t feel like eating dinner. Everyone was asking me what was wrong but I figured that they should know what was wrong. My eight-year-old son has Autism and he had to have a lot of medication because of a seizure. Now he can’t walk and for a few days, I have to carry him around.”

“To me, that’s very sad”, he explained. “I got up from the table and went to rest in my room and now everyone is upset with me.”

“Did you tell them why you were sad?” I asked.

“No”, he replied. “My wife has enough to worry about and I didn’t want to upset her any further.”

This was a defining moment in our conversation.

“Can I offer you my point of view, a wife’s perspective?” I asked.

“Sure”, he said.

“I know that you want to protect your wife’s feelings by not telling her how you feel because you don’t want to create additional stress for her. “

“That’s right”, he affirmed.

“When we don’t communicate our feelings and we emotionally withdraw, we can actually cause more stress and anxiety for our loved ones. It creates tension and misunderstanding. You may leave them wondering if it was something they said or did that is causing your grief and unhappiness.”

“Oh”, he replied. “I never thought of that.”

“We may feel vulnerable and exposed when we have candid conversations, however, it is important to be open and honest so that we can understand each other’s perspective. That is how we learn and flourish in our relationships.”, I offered.

“Otherwise strain and hostility may grow, putting the relationship at risk.”

“That makes sense”, he said. “Thanks.”

Whether we are parents or we are in a supporting role, it is crucial that we communicate openly and honestly. Otherwise tensions mount, misunderstanding occur and unnecessary conflict may arise.

By sharing perspectives, we can strengthen our connection and find a balance that works for everyone, especially for the person you are teaching, caring for or supporting.

What Are Functional Skills And Why Does My Child With A Disability Need Them?

Are you concerned that your child with a disability is not learning

academics at a grade and age level pace? Have you thought that your

child may benefit from a curriculum of functional skills? Would you

like to learn about a resource that can help you learn more about

functional curriculums for your child in special education? This

article will discuss functional skills, functional academics, why your

child with a disability needs them, and a resource for more

information.

Functional skills are defined as skills that can be used everyday, in

different environments. Functional skills focus on different areas

such as home (cooking, cleaning etc) family, self help skills

(bathing, brushing teeth, dressing, grooming), employment, recreation,

community involvement, health, and functional academics. All students

with disabilities will benefit from functional skill training, to help

them in their adult life.

Functional academics are also important for children with

disabilities, who may not be able to learn age and grade appropriate

academics. Functional academics are defined as academic areas that

will be used by the student for the rest of their life. For example:

Reading (read signs; stop, go, mens, womens, read a recipe). Math

(money, grocery shopping, making change, budget). Health (grooming,

oral hygiene, plan healthy meals). A wonderful resource to learn more

about functional skills, and functional curriculums to help children

with special needs is the book entitled Functional Curriculum for

Elementary, Middle, and Secondary Age Students with Special Needs.

The book is Edited by Paul Wehman and John Kregal, and is a resource

that you will use again and again.

Your child with a disability needs functional skills because these

skills will have meaning for your child, and will help them be as

independent as possible, as an adult. For example: Every child eats,

and being able to cook or prepare simple foods will help them be more

independent. If children learn simple household chores, these skills

can be turned into job skills when they get older. For example: My

daughter Angelina, who has a severe disability, learned how to fold

towels when she was in elementary school. When Angelina entered high

school she had a job folding towels at the high school pool. Because

Angelina already had the functional skill of folding towels, the

transition to a job folding towels was pretty easy. Angelina also

learned that when she worked hard folding towels, she was paid. On pay

day, she was able to spend the money that she made at her job.

Learning functional skills that can be turned into work is critical

for all children with disabilities. They will gain pride by being able

to work, and will understand the connection between work and money.

By learning what functional skills are and why they are important,

will help your child as they grow into adulthood. Do not be afraid to

bring up functional skill training for your child, when you are

participating in IEP meetings. Your child is depending on you to help

them be a happy fulfilled adult!