Why is advocacy important?
Photographer: Joe Gratz
We vote our elected officials into office to write our laws. But many people feel too nervous to approach their politicians. They may feel like they won’t be listened to or that they don’t have anything important to say. This is not true!If something is important to you, it is probably important to many others as well. Everyone’s voice should be heard.
But I don’t have the time!
As a mother of children with special needs, I know how hard it is to find time to get involved. Leaders want to hear the personal stories behind the numbers.They want to see pictures of people impacted by laws. If you are reading this blog, you can email your legislator your story and become part of a change for the better.
Where do I start?
If you don’t know who your state legislators are, then a great place to start is the Massachusetts State Legislature website. On the web site, there is a text box in the upper right hand corner. It asks you for your zip code. You type in your zip code and the web site will bring up information for your legislators. From there, you can choose to call, email or write your legislators depending on how much time you have and what your comfort level is. What is important is that you communicate your needs, thoughts and concerns with lawmakers. Your voice and your ideas could be what changes people’s lives for the better. You can be the change for the better.
For more information, you can also visit:
Experts are learning more each day about the role genetics plays in Autism. Sometimes Autism is caused by changes in a child’s genes or DNA. These changes can run in a family. Or, these changes can be new to your child. A genetic test can help you learn more about these changes.
Why should children with Autism receive Genetic Testing?
• Genetic testing can explain why a child developed Autism.
• The test can help decide which services are best for the child.
• A genetic test can help reveal other health problems in the child.
• This test can help parents decide if they want to have more kids.
Genetic Testing does not tell you:
• how a child will develop;
• how well your child’s treatments will work;
• who the parent of your child is; or
• if you have HIV or have used drugs
It is not legal for your health insurance to change based on the results of this test.
A genetic test is often a blood test. There are different kinds of tests. Your doctor decides which tests are best for your child.
To get Genetic Testing, a doctor can:
1. order the genetic test; or
2. refer a child to a genetics team
The genetics team are experts in genes. They can explain in more detail the genetic test and its results. Meeting with a genetics team is often helpful, even if testing is not done.
Many insurance plans cover genetic testing. But, you should talk to your child’s doctor and insurance company before having the test.
Genetic testing can help children and their families. Talk to your doctor to see if it is a good option for your child.
To learn more:
Guidelines for Genetic Testing
What is Genetic Testing?
I am the mother of an 11 year old girl who has a developmental disability. My daughter needs lots of support. At the moment my daughter is stable, healthy and in a good school. Often times I think about her future and about her needs. I know I will be caring for her when she gets older. For me it is important that she receives good care. Also that she can be healthy and happy.
Parents caring for their children with special needs are very important. As parents, we have positive impact in helping our kids remain in their homes. We know what our kids need. We know what they like and what they wish. Our kids keep us positive. They give us energy every day. They make us happy when all is going well. Our kids give us lots of love.
Caring for ourselves
As parents we don’t count with much time. The most important things are our kids and family. Sometimes we forget about our own medical appointments. Going to our doctor may take us longer time. We are sometimes really tired. We need to try to make more time for our own needs. We need to try to go to our doctor’s appointments. Is important that we are well, so our kids are well too.
For more information
girl with pony
As a mom of five, I have seen animals used to help people. The tests show that animals help people:
- be healthy and happy
- lower their heart rate
- help heal faster
- have hope and comfort
- predict seizures.
Many animals can be used in animal-assisted therapy. Dogs and cats are common. Horses, goats, and dolphins are used too.
They are used in nursing homes. Schools and doctors use them too. The army and firemen work with dogs. Animals work with people who have cancer as well.
For more information, please see:
Pet Therapy: How Animals And Humans Heal Each Other
Young child being guided by a swim teacher
When a child is diagnosed with Autism, the last thing parents are thinking about is swimming and water safety. But, there is information that tells us they should.
- 9 of 10 children who die before age 14 do so by drowning.
- National Autism Association, 2012
- Drowning is a known danger for children who are 1 to 4 years old. The risk decreases with age for most children. For many children with Autism, the risk does not decrease with age.
- Drowning is the number one cause of death for children with autism age 14 and under.
- National Autism Association, 2012
Why are children with Autism at greater risk?
Many children with Autism are drawn to water. Scientists and researchers do not know why.
Running away from safe places is a problem for many with autism. This behavior stops happening around age 4 for typical children. For many children with Autism, it continues well beyond age 4.
Professionals rarely teach parents about the risk of children running from safe environments.
Language delays and sensory problems can make learning to swim difficult. Many children with Autism learn differently. What they hear may not be what is said. What they have to say may not be heard.
Sensory differences are also a challenge. Water temperature. Noise level. Touch. All can get in the way of learning.
Autism-specific swim programs are hard to find. Typical swim programs may not be best. Some children may need trained teachers. One-on-one teaching may be necessary.
What can parents do?
Manage the surroundings. Make your home safe. Use fences. Use door and window alarms. Consider a tracking bracelet for your child. LoJack Safety Net is waterproof and can be tracked under water.
If you have a pool, call a professional to help with making it safer.
Speak to your local fire and police departments. Be sure they know you have a child at a higher risk for running from safe environments.
Work with your ABA provider and/or school system to develop a plan at home and at school. Make sure plans are in place. How can your child be kept safe? What is in place to make running from safe settings more difficult? What is the plan if your child is missing? Ask your school or ABA provider to work on words such as “DANGER” and “STOP”.
Tell everyone who works with your child if your child is drawn to water. Identify nearby water sources. List them in your plan.
As a future public health worker, I want to learn more about programs that help disabled people. One of them is Adult Foster Care.
Who is eligible?
- A person with a disability
- Must be 16 years of age or older.
- Can not live alone
- Must need daily assistance with one or more activities of daily living for example: bathing, dressing or eating.
- Must be approved by a doctor.
Do you have to pay?
The caregiver will receive tax-free money.
For more information visit Massachusetts Council for Adult Foster Care.
There are some children who have difficulty talking. Using a tablet can help. Finding the right tablet for each child is not easy. A specialist, called a Speech Language Pathologist (SLP), is like a doctor. A SLP meets with the child and watches the child playing. The SLP also speaks to the child. The SLP enables the child to play with different tablets. The purpose is to see which tablet the child likes to use the most. The SLP then asks the child to do a few tasks. The difficulty of the task levels go up to match the level of the child’s understanding. The
SLP has questions for parents as well. The SLP wants to understand how parents and their children talk to each other at home.
Once the SLP finishes meeting with the child, the SLP will write a report. Parents will receive a copy. If parents want to get a tablet for their child, parents and the SLP will work with each other for at least a month. They watch the child using the tablet at school, and then at home. The purpose is to see if the new tablet is really helpful for the child. Parents will take some data to share with the SLP.
Once a child has the right matching tablet, it is important for the parents to know how to use it. Training for parents is important. Parents need to know how to help their children. Many are afraid of allowing their children to use tablets. They worry their children will become dependent on a tablet and not vocalize any more.
For more information, contact Massachusetts Advocates for Children.
I am a family member of a brother with epilepsy. I am not from the U. S. I have always wondered why there isn’t any help for people with epilepsy in my country. I thought once people were found to be disabled or epileptic, they are seen as different. I thought there is nothing to be done for them.
Once in the U.S, I learned people with epilepsy have places to go. I learned help is given to them correctly. I plan on learning best training ways and ideas. I will apply them in my home country. I want to study what local and state groups offer. I want to find out how better services can be given to people with epilepsy.
I am now an agent who has worked in the disability field for a while. I came to realize there are gaps in the ways disabilities are seen. I decided to do more research to understand the difference in epilepsy aids and healing. I will then present my thoughts and next steps.
For more information and resources: Epilepsy Fact Sheet
What is it?
Person-centered planning is a tool that can help you move forward with your dreams. It is about what you want to be doing in your life. It is also about what is most important to you. Imagine a meeting in which everyone is talking about what you are good at doing. Wouldn’t that be fun!
How is it done?
There are many ways to do person-centered planning. The first part is identifying what your goals are for the future. For example, you may want to live on your own, get married, and have a job you enjoy. Another important part is inviting people in your life to be part of the planning. You may want to invite friends or family members; such as parents, cousins, grandparents etc. You also might invite neighbors or people from groups you are part of, such as church or other clubs. This is like having your own team. The people on your team will support you. For example, your neighbor may be in the type of work you want to do. This neighbor may help you meet people at their workplace.
Here are some commonly used tools to carry out person-centered planning:
- Whole Life Planning
- Personal Futures Planning.
Why is it important?
It is important because all planning about your life should be led by you! You know best what you want to be doing. It helps to have a team of people who care about you. It is a great tool that has helped many people identify what they want to be doing and how to do it.
For information please visit: Bethmount.org
Persons with disabilities can:
- Learn the past
- Talk about big and small issues
- Share ideas
- Listen to others
- Make things to share your ideas
The community gains:
- A place for everyone
- A place for everyone to learn new things together
- A place to share ideas
I lead an organization called Our Space Our Place, Inc., an after school program for youth who are blind. We visit many museums. Our students learn about different cultures. They write stories and poems. They talk about the stories in art. They talk about their favorite paintings and sculptures with their families and friends. Taking a tour or making art opens new worlds.
For more information about museum programs for people with disabilities contact:
- Museum of Fine Arts
- Hannah Goodwin
- Phone: 617-369-3189
- TTY: 617-369-3395 or
- Email: email@example.com