Raising Different Happy, Healthy and Intelligent Kids

Like most parents, we welcomed our first new born with great excitement and anticipation. We did the usual things parents-to-be do – getting ready a nursery with decorations, furniture, toys and clothing. We read books and went to classes on how to raise the boy in his first year. Little did we know none of this would prepare us to cope with what lay ahead. Vincent was born in the US full term without complications. We brought him back to Singapore when he was 10 weeks old. Our aim was to bring him up in a multi cultural and multi lingual environment.However, when he was three months’ old, Vincent became a regular visitor to the doctor’s clinic. He was diagnosed with spleen and liver enlargements that required weekly, monthly then half yearly lever function blood tests. His enzyme was at 800+ while the normal kid should be below 50. His enzyme level stabilized when he turned three.At 14 months’, he got an infection from a make up BCG injection. This required general anesthetization and operation to remove the pustule. At two, the doctor found that Vincent had a heart murmur. Thankfully, it was a benign murmur put down to growth. At 3 , Vincent fell over a roadside curve which required three stitches above his right eye brow. At four, he had high fever for two consecutive days and had to be admitted to hospital. In between, there were the common flu and colds.I imagine many parents have gone through similar scenarios. But these weren’t the challenges that confronted our beliefs, tested our strength, and changed the course of our lives. Vincent had met all developmental milestones until we noticed he was different at a year and half. He had no language. This literally meant he did not utter a single comprehensible word. He did not call Mum or Dad. The doctor told us not to worry as boys normally develop language skills later than girls.We became really worried when he still did not have any language at two years old. This started another stream of consultation with specialists in ENT (Ear, Nose and Throat), neurology, psychology, and psychiatry. It took us more than two years to search, schedule and complete the evaluation. Vincent’s hearing was tested. The neurologist couldn’t find anything unusual from the visual evaluation and referred us to a psychologist.The session with the psychologist was disastrous. She was more than one hour late for the appointment. Vincent lost patience waiting and wet his pants during the evaluation, though he had been toilet trained. The psychologist prescribed him as having a “Behavior Disorder”. This brought disbelief and confusion to us. The only positive outcome was a list of recommended schools that would accept kids like Vincent.A dark shadow
We then sought advice from a renowned psychiatrist. I still vividly remember the meeting over Vincent’s diagnosis: Pervasive Developmental Disorder, Not Otherwise Specified (PDD NOS). In ayman’s term, Vincent was severely delayed in development but the doctor couldn’t pinpoint the cause. The psychiatrist’s response that Vincent might not ever be able to live an independent life cast a dark shadow over the family.In between the numerous evaluations, we managed to enroll Vincent into a private school with a special education program starting at age three. This marked the beginning of ever lasting therapeutic and learning programs for Vincent. To augment the learning of spoken language, Vincent was introduced to sign language and so were the parents. It was one of the happiest moments in life to hear Vincent call out ‘Mum’ and ‘Dad’ at the age of three years and four months. Though his language advanced from one word to two words level in relative short time, the speed of learning stalled. The speech pathologist advised that he needed to improve his gross and fine motor skills before language learning could accelerate.At the strong recommendation of the teachers and specialists, we moved back to US when Vincent was five. It started a new chapter of life for Vincent and the family. Through references, we were fortunate to find a developmental pediatrician who specialized in kids like Vincent. She did a thorough evaluation of Vincent and diagnosed him as a kid with Autism Spectrum Disorder (ASD). Autism is a lifelong developmental disability that typically appears in early childhood. Vincent was literal with minimal imagination and common sense, and was inflexible to change. He had no eye contact, could not read social cues, had Attention Deficit Hyperactive Disorder (ADHD) and Obsessive Compulsive Disorder (OCD), showed severe delay in communication, and had gross motor and sensory dysfunction.He exhibited symptoms of a typical autistic kid, except he was not hiding in a corner. On the contrary, he was very sociable. We started a series of therapies with Vincent. He attended private speech and occupational therapy for a year until the school could effectively address his needs. He also took herapeutic horseback riding once a week and swimming twice a week. Horseback riding helped calm him down and regulate his brain while swimming improved gross motor skills. He did both activities for more than five years.Seeking the aid of MozartDuring these five years, we performed Patricia Wilbarger brushing at two-hour intervals to reduce sensory dysfunction, even when we were out. At the same time, he was put under Auditory Integrated Therapy (AIT). He listened to Mozart with filtered tune that was supposedly to stimulate brain function differently from regular music. Later on he had music therapy to inspire creativity. He attended 15 interactive metronome sessions to increase attention span. At the end of three months’ intensive therapy, he could clap 1,500 times nonstop and consistently. We also engaged a motor specialist to improve his handwriting. The US law mandates public schools to provide support for kids with special needs. Vincent was integrated straight into mainstream kindergarten.With limited language, mainstream kindergarten was extremely challenging for Vincent. He was easily distracted and so disruptive that he had to be brought out of the classroom. Frequent breaks or walking the school hallways were a daily event. We had to cross our fingers every day and pray that he had a good school day without incidences. With medication and consistent support, Vincent learned the daily routines and began picking up language gradually. During the First Grade language test, he scored at 1%. This meant in a hundred kids, he was the last in language proficiency. At home we worked on cognitive skills, basic and spatial concepts, attributes and functions with flash cards, and a daily follow up of the school’s teaching. We also taught him phonics, time, numbers, size, money, etc. It was daunting to teach him 10 cents have more value than 5 cents when the 10 cents coin is smaller than 5 cents. Vincent’s language improved to 25% by 2nd Grade. He advanced it to around 50% by the end of 4th Grade, well beyond any specialist’s expectations.Once Vincent picked up languages, he participated in classroom activity with less and less assistance from the special education teacher and the education aide.Shifting focusThe focus for IEP has shifted to social interaction and communication. Socially we have gone through times than language learning. During kindergarten, neighbor’s kids called him crazy and dumb. Fortunately, the name-calling was only hard on us parents as Vincent could not understand them. He was never invited to a birthday party from kindergarten to fourth grade. The school speech therapist drafted programs for Vincent to role-play and sat with him during lunchtime to coach him. We read books and wrote Carol Gray’s social stories to demonstrate to him the broad social rules of behavior for each occasion and getting along.He joined social skills training at a hospital and in the summer camp. Nothing came easy to Vincent. Everything had to be taught. He needed – and needs – written rules and demonstrations to guide him through each social occasion. It was hoped that he would be able to apply instantly once he gained broad base foundations. All the practices and coaching paid off when Vincent finally made three friends at Fifth Grade.He was invited to their birthday parties. He invited them back for sleep over. He made a couple more friends at Sixth Grade. He maintained two of them as his buddies with whom he talked during lunchtime and played with after school. He no longer was a lone ranger or a target for bullies at school. We were fortunate that Vincent reacted positively to all the therapies and interventions. The developmental pediatrician was very pleased with Vincent’s advancement. A psychological evaluation showed that Vincent continues to function in the above average to superior range of intelligence. He was no longer exhibiting significant discrepancy between verbal and nonverbal abilities. The doctor changed Vincent’s diagnostic to Asperger Syndrome, the mildest form of the ASD, at the age of nine.Fulfilling a dreamAfter many years of challenges, we started treating Vincent more like a normal kid. There are set rules on TV time. He had an allowance to purchase his favorite games and toys. He learned how to do laundry, use the dryer, fold clothes, wash dishes and cars, sweep floors, operate the vacuum cleaner, and change light bulbs, etc. Recently, he started preparing his own breakfast, cooking instant noodles, frying eggs and using a knife.He needs these skills when he goes to college. We expect him to behave appropriately in public and at gatherings. He said he was responsible for his schoolwork so we stopped checking his homework or reviewing with him before tests. His duty as a student is to perform well academically and maintain his honor roll. He continues reading voraciously, especially science and nonfiction books. As he is not athletically inclined, he has chosen fencing as his only form of sport.For many years without changing, his goal is to become a Zoo Veterinarian. He is on track to fulfilling his dream. After difficult processes of denial, blame, frustration, anger, acceptance and resolution, we have come to terms with his diagnosis. While we search for treatments that best suit him, we accept, most of the time, who he is and what he will become. We have vowed to provide him whatever normal kids enjoy and we expect him to perform no less than other kids’ of his calibre. We understand there are more challenges ahead of him and us but we are confident he will lead a happy and independent life.

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Unheard Voices

Imagine, if you will, that for some reason, an injury, illness or old age, you required assistance to do the things in life that you normally do. The activities that make your life your own became dependent on someone else’s help. Visualize what it would be like if you had to have assistance to go shopping, or to get groceries, to buy clothes, go to the library, a movie, or a concert. How would it feel if you were dependent on someone else to drive you to those places, help you on and off a bus or drive you in a car?Got the picture? Now imagine what it would be like if you didn’t have a family or friends to help you out, and that the injury or illness became a permanent part of your life. You could hire help, right? Visualize that you live below poverty level on a fixed income, and the government has decided that the only activities that you need to engage in are those that are a medical necessity. No more concerts, movies, or recreation of any kind.That is exactly what is happening right now in Colorado to people with developmental disabilities. With the economic downturn and the continuing vicious cuts to Colorado’s state budget, assistance to people with developmental disabilities has been reduced to a bare-bones, medical necessity paradigm.The Health Care Policy and Finance Department (HCPF), which oversees Medicaid coverage, put a financial cap on funding for services and standardized reimbursement rates for services provided for people in the Supported Living Services Waiver (SLS) and the Children’s Extensive Support Services Waiver (CES) programs, on July 1, 2009. These actions are, in themselves, not a bad thing. Standardization of service definitions, requirements for service provision, and accountability for quality provision of services have helped all service providers for people with Developmental Disabilities to “get on the same page” and to put some order into previous chaos in certain areas of service provision. However, since July 1, 2009, in addition to the imposed caps, reimbursement rates for services provided by these programs have been sliced two more times by two percent each time.The predominant agencies in Colorado which are responsible for providing services for the people with Developmental Disabilities (DD) are called Community Centered Boards (CCBs). They either employ people to provide services or contract with other individuals, companies or agencies to provide services for people with DD. The last dicing of funding resources occurred July 1, 2010, and took the rate reimbursement amounts low enough that many service providers will be unable to continue to stay afloat as they will not be able to compensate employees or contractors and pay for administrative and business costs as well. Employees of many CCB’s have not received raises, have taken furlough days and given up benefits in order to keep their companies viable. Contractors have agreed to take reductions in pay, or have decided to move onto more lucrative and supportive fields of work.Supported Living Services (SLS) is a program which provides the support needed to foster independence for individuals living on their own or with their families. One of the program’s goals is to provide the appropriate services to individuals and their families so that the person receiving services does not have to live in a residential care setting or be institutionalized. According to David Braddock, Ph.D., Executive Director of the Coleman Institute for Cognitive Disabilities, in 2009, there were around 4,181 persons in Supported Living Services in Colorado, which averages out to around 74.3 people in SLS per each one hundred thousand Coloradans.Services offered in SLS are as varied as are its participants. One person may need only some help with money management and developing better employment habits or other employment supports. Another may need help with housekeeping, hygiene or social skills. Yet another may need behavioral counseling and a plan in place to help them remain in society. Some families need help with personal care or respite for their loved ones.In addition to the reduction in rate reimbursements, the cap on the amounts available for services, and the reduction in financial support for people in these waivers, HCPF has also redefined the service definitions that are approved for funding.No longer can a person in SLS go to a movie or a concert if they need paid program assistance to do so. Bowling and bingo are also out, unless the service provider can prove a health related reason for them to be able to go. If they require help to go to a parade, then the service plan had better show how that activity promotes socialization and that is necessary for them to “socialize” for their health. If an activity, an outing or a product is not medically necessary for this population, then it is not being approved as a service. And, heaven forbid, that those SLS clients that live in ski areas want to go skiing with their buddies! Even if they pay for it themselves, the new regulations won’t pay for someone to help them go there and back to their homes. Recreation has been totally taken out of the SLS and CES service definitions and only exists in order to buy adaptive equipment or pay for a fee for an activity that is health-related and monitored by a health professional.In the Children’s Extensive Support waiver, they have denied a certified Yoga instructor program as “movement therapy”, even though the service clearly has provided and supported all of the components of the definition of “movement therapy” and has been helping one particular child to “be in the world” without injuring herself or others. Within two weeks after this child had to stop participating in yoga because it was no longer being reimbursed, she exhibited less motor control, started falling down again, had less body awareness, started running into things and other people again, and has sustained several injuries.Another CES rejection was in response to a request for a portable safety bed for a child who is mobile, knows no boundaries and doesn’t sleep much. The request was made so that the child would be safe at night while the family travels to other places; including to Denver to the doctor, or while camping. The response with the denial was: camping and hotel rooms are not a medical necessity.In 1975, the de-institutionalization for the “mentally retarded” started gaining recognition and energy as a movement. In the following decades, study after study has proved that the people with developmental disabilities could and should have a place in society as a whole. It continues to be an uphill battle to include people with DD in the mainstream population and especially difficult to prove their “worth” quantitatively for those who crunch the numbers. Now that it is not so unusual to see a person with DD bagging groceries, going shopping, or sitting next to you at a movie, the system that worked so hard to integrate this population into society is pushing them back into seclusion because of lack of funding. One thing that is certain, on a strictly financial basis, it costs much less to provide services to people with DD who are living at home alone or with their family or in a small residential setting than to pay for people who are living in an institution. The cutbacks that are resulting in extreme reductions in services are going to have the opposite result financially than the one that is desired.As of last year, there were approximately 4200 adults and 400 children in the SLS and CES programs in Colorado who were living with family members, on their own or with a friend. They have been living healthy productive lives and have become part of our communities. Due to the reduction of funding and the medical-necessity approach to provision of services, the continuing cuts are forcing the clients right back into residential settings.In addition to the reductions in funding and limitations on services, there is now a huge controversy regarding conflict of interest going on at the state level, the results of which will determine whether or not CCB’s can keep case management and continue to provide services. This means that CCB’s potentially may have to choose between continuing to provide case management or continue to provide services for people with developmental disabilities. The results of this split will be devastating for individuals and families who have been receiving both from CCB’s, some of them for decades, some of them for their whole life. Relationships have been formed, trust has been established, and interpersonal connections have been made. Those aspects of case management and service provision are grossly ignored by the people making the changes and the rules.Another “movement” on the horizon that will drastically affect the population with DD, is what is called the “Accountable Care Collaborative”, which is intended to “redesign the Medicaid program to provide a focal point of care/medical home for all clients – particularly for those with complex needs,” according to Sandeep Wadhwa, MD, who was, in June, the State Medicaid Director and Chief Medical Officer. Sounds great, doesn’t’ it?This plan will divide the State of Colorado into seven medical home regions. According to Wadhwa’s presentation at the Alliance June Training Summit, the Accountable Care Collaborative will “develop regional accountability for clients’ health status and affordability”.Proposed Regions 2,3,5,6,and 7, make some sense as to how they are laid out on the Front Range. However, almost half of the state will be in Region 1, which includes all of the western slope and spans across the middle north counties, including Larimer, Grand, Eagle and Summit. It runs all the way to Archuleta County in the south, and Montezuma County in the SW corner to Moffat in the NW corner.Have you ever driven from Ft. Collins in Larimer County to Cortez in Montezuma County, or even just to Grand Junction in Mesa County? It takes a full day in the car to get from one of those areas to the other. Very few people with developmental disabilities drive a car, own a car or can even ride a bus on their own (that is if there were buses throughout the region). The transportation issues alone for this “region” are unfathomable in their difficulties; and that is without even mentioning the weather or the mountains that divide this state. If you bring in the economic variances, the lack of rural services, the extreme cultural diversities that are widely affected by location, you have an unimaginable challenge as to how this region will actually be able to “invest in care coordination” and “develop regional accountability for clients’ health status and affordability”.It is crystal clear to me that in every area I have discussed, no one is asking the people who will be affected the most by these actions. No one is taking into consideration that these are people with needs, just like you and I, and their needs are even more ‘special’ than yours and mine. Those of us who work the “front lines” with people with disabilities are committed to provide assistance that supports their quality of life and maintains personal dignity. I personally don’t know anyone who does it “for the money”, because, frankly, there isn’t any. CCB employees’ and contractors’ pay rates start at minimum wage and range approximately twenty percent below the pay of State Employees, including teachers, with comparable jobs duties. Our commitment to provide services for people who need them is because we know they can’t do it for themselves.Every funding cut, service restriction, and mindless restructuring of service system will continue to take away another piece of these people’s lives, until there is no quality of life left for them. So then, what good will it do to make sure they have every medical necessity available for them? When there are no more opportunities to be useful in the community, for social interaction, art, music, for any fun at all, then what? Who speaks for these unheard voices? And the bigger question is: who is listening?

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