November 8th 2016...
(Or Time To Set Your Clock Back 41 Years)
November ended a most difficult campaign for the president of the United States. Now that it is over we have woken up to a reality that may not sit well with some. Despite your views on trade, the economy, supreme court, and other political issues, some non-political issues made the headlines which should have horrified the country but did not.
Last fall our president elect openly mocked a disabled reporter named Serge Kovaleski, who has arthrogryposis, a congenital condition affecting the joints. Unable to use his right hand which is prone to shaking, Trump imitated the movements and spoke in a voice that sounded like an Amos and Andy version of someone who either stuttered or had a speech impediment. In fairness, Trump said he didn’t do it, but it is on film, and if you look, it is clear he consciously made the decision to contort his hand, shake, and imitate a speech impediment. Trump said he didn’t even know Serge was disabled, but the truth is the two were on a first name basis since the 1980s. He knew who he was imitating.
Given the lasting stigma around people with disabilities and the easiness with which pop culture has mocked them over the years, the outraged reaction from the public was striking.
"People are starting to see people with disabilities for their abilities," said Jennifer Laszlo Mizrahi, president of the advocacy group RespectAbility, citing Olympic swimmer Michael Phelps, who has Attention Deficit Disorder, and Nyle DiMarco, winner of America's Next Top Model and Dancing with the Stars, who is deaf.
"But one thing they don't want to see about people with disabilities is for us to be bullied," she added.
Now that the commander in chief will set a tone for the country it is likely that special education and special needs people are going to have to start over, or at least take a few steps back. We have excused the fact that in America, it is okay to mock people. You can deny it later. It took effort to do what Trump did. It took purpose and he was trying to make a point.
41 years ago the IDEA law went into effect to ensure person’s with special needs have the support, the education, and the resources necessary to live independent and inclusive lives. Since then there has been movement forward and many gains in the way people with disabilities are treated in this country. We have done an excellent job making sure people with disabilities have the same access to the community as any citizen. But in one gesture, how far back have we gone?
Trump’s message to America is that a disability is fair game to mock. Its effects are like Fashion week in New York City. Top designers roll out their outrageous outfits. No one buys them, but they set the trend and styles for the rest of the year in fashion.
Now is the time we need to fight harder than ever for the rights of those with disabilities.
I am sure Trump’s “trickle-down” morality will affect those with special needs who rely on the government for assistance. It is time for us to pick up the pen and write to him about how disappointed we are as Americans that this is how he views those with disabilities.
Daniel Loses a Tooth!
Daniel knows a thing or two about taking care of his teeth. He learns a lot in school about one of the many important adaptive skills we teach. New in the middle school this year is a dedicated period for all middle school students to practice adaptive skills.
Things like brushing teeth, washing hands, organization, tying shoes, making breakfast, etc. are all covered every morning grades 6 through 8. Of course in high school and SKILLs there is also an emphasis on adaptive skills. Making sure these skills are practiced daily and transfer to the home is an important goal of the program.
We are undertaking a new K-21 initiative. The goal is to track and monitor general adaptive skills instruction among the many diverse groups of students. While some students receive life skills instruction once or twice a week, other students receive it every day. We are looking forward to obtaining the information to better inform our curriculum development.
Halloween at Cooke!
Halloween is a big deal around here. Kids and adults celebrate with costumes and activities. I can never tell who has a better time. Celebrations are always a big deal in school. Like your families our school community is a family which shares special events which build the community.
Click here to view Cooke's school-wide Halloween Celebrations!
Some costumes are easy to recognize. With others you need to be an insider, Ms. Melody and Ms. Meagan are….. well you will have to ask the kids!
"This town isn’t big enough for the two us". Well, maybe it is, Louis knows how to share!
Two angels. But we knew that before the costumes.
Since we are all stressed….
Parents who are raising a child with special needs report higher levels of stress than those raising children without special needs. That may seem obvious. Parents in our community have additional stress just trying to get their child involved in social interactions.
They have higher concerns about atypical behaviors and outbursts, and additional stress of ensuring effective commination. Other sources of stress for parents include a lack of adequate professional support and social attitudes towards individuals with ASD and a lack of awareness about understanding the problems they and their families experience. In many cases lack of sleep and lack of “alone” time for the adult on top of the normal parenting stress that every parent faces can create a difficult experience for a parent.
Good advice from Dr Leonaura Rhodes, What To Do...
DO - Acknowledge that stress is more common in families with a special needs child You are not the first parent--and you most certainly won’t be the last parent of a special needs child--to suffer from extreme chronic stress.
It is an incredibly challenging situation to be in, and you most certainly didn’t ask for it. The additional stressors include:
- Behavioral problems, such as your child having a tantrum in a store, can be very stressful.
- Sleep problems are common in children with special needs and lead to cranky children. And if you are chronically sleep deprived, they can lead to exhaustion and a reduced ability to cope with stress.
- Unexpected development. Many children go through periods when development is slow or unusual, and then seems to improve, only to worsen again.
- Financial issues, due to the cost of doctor visits, therapies, education and sometimes legal costs needed to access services.
- Acute health problems are more common in children with special needs--both physical and mental health problems.
- Relationship issues within family due to increased stress or conflicts in opinion re treatment.
- Loss or change of career. Many parents, most commonly mothers, must quit or change jobs, so they can be available to meet their child’s needs.
- Siblings. Having a sibling with special needs has significant effects. Some siblings become stronger and more empathic, but others are resentful and develop their own behavioral problems in response.
- Challenges with social skills and relationship difficulties can be a source of stress. Every parent wants their child to have successful relationships and friendships.
DO - Identify your sources of stress
Take a moment for honest self-reflection about your sources of stress and write them all down. This can be quite cathartic. When we were cave-people, our sources of stress came mainly from real-life threats to our survival. But today, our stress triggers come from two sources: external to us (events, our children, our situation) and internal (from our own brain and mind).
In parents of special needs children, there are undoubtedly more sources of external stress arising from your child’s complex situation. And over time, internal sources of stress in the shape of negative thinking, grief, anxiety and uncertainty pile up, all of which creates one big pile of stress.
Additional internal sources of stress include grieving; negative thoughts, such as “Why me?” and “Why my child?”; guilt and blame; uncertainty and worry about your child’s future; and embarrassment and fear that others will judge you.
DO - Become an expert on your child’s condition
Knowledge is power. Your child needs you to be a strong, empowered advocate for him or her. When you walk into a meeting with a doctor or a special education team, you need to be armed with accurate knowledge about your child and his/her condition.
Begin by keeping good records of every visit, letter and meeting. Find reputable sources of information on your child’s disability and learn as much as you can. Learn about treatment options, education protocols and what to expect. Get help from a support group, library, coach or other professional if you are struggling.
Do get healthy
A healthy body and brain reacts better to stress. Health is a balancing act between health liabilities and health assets. Reduce health liabilities, which are things that are bad for your health, including poor diet, inactivity, smoking, spending time with toxic people and avoiding medical care for health problems. Health assets should be increased with healthy diet, good hydration, positive thinking, good sleep AND having fun and nurturing yourself.
DO - Develop a stress management toolkit
A stress management toolkit is a pre-identified list of things that help you manage your stress. Just as stress is based on our own personal perspective, so is our stress management. Some people love massage, other people hate it. Some people find classical music relaxing, while others love nothing more than to chill to Nirvana.
Tools include the following:
- Lifestyle changes, such as exercise, listening to music or eating well.
- Build positive relationships and consciously spend time with people who make you feel good.
- Engage in activities that put you in a positive state. Have fun because you deserve it.
- Journaling is like having a conversation with your own subconscious mind.
- Neuroscience research shows that mindfulness practice is an extremely powerful tool in managing stress and can change the function of the brain. This includes diaphragmatic breathing, meditation, relaxation and prayer.
- Spend time in the glory of nature.
DO what works for you!
- Acknowledge that stress is more common in families with a special needs child
- Identify your sources of stress
- Become an expert on your child’s condition
- Get healthy
- Develop a stress management toolkit
- Judge yourself too harshly
- Belittle someone else’s stress
- Ignore your stress
- Neglect your health
- Over-identify yourself as a parent of a special needs child
Research on mothers supporting children with ASD has highlighted what factors they feel they need additional help.
Unmet Needs reported by mothers Percent of All Mothers
Help with care during holidays 93
To do things parent enjoys 91
Advice on best way to help child 87
Break from caring for child 87
Someone to talk to 85
Advice on child’s future education 83
Help plan for child’s future 81
Managing child’s behavior 80
Advice on which services are available 79
Planning for child’s future 69
Meeting other parents 69
To enable parent to spend more time with other children 63
To enable parent to spend more time with partner 61
Parent’s education, skill and interests 60
To travel/holiday with child 55
Respite care 55
Child’s sleep pattern 52
Transporting child 48
Look after child at family and community events 48
Emergency child care 48
To enable carer to get employment 45
Emergency health care 43
Adapting house 39
Finding a school for child 37