Parenting Impossible – The Special Needs Survival Podcast

On this episode of Parenting Impossible, The Special Needs Survival Podcast, Annette talks with Leslie M. Leslie of The Federation for Children with Special Needs to discuss how to be more involved in the education process as a special needs parent. Leslie serves as the Project Director for the MassPAC and APPLE projects at the Federation for Children with Special Needs. She provides technical assistance to both Special Education Parent Advisory Councils (SEPACs) and school district special education administrators.

Leslie and Annette discuss how emotions can and do run high when it comes to advocating for your special needs loved one in the education system. The makeup of families has changed over time and language barriers can sometimes be just one of many issues in the way of effective communications with a school district.

Leslie speaks to the power of parent advisory groups and how collectively, the groups can inform administrators what they feel is working for special needs students and what they feel could be improved on. But she feels that more states need to get help to set these groups up in school districts.

Leslie and her team help parent volunteers set these groups up, advise them on how to formally advise a school district and also advise them on open meeting laws as well as other ways to improve the networks. These groups she says bring an important voice to the table.

She wants to ultimately have parent groups build trust with the school administrators while respecting the role of the educators.

Leslie also takes time to discuss what should be discussed through these groups and what needs to be addressed in private. General topics of student services should be private while issues concerning bullying, transportation or other systemic issues can be addressed through the group to the district.

Leslie takes time to walk listeners through a few basic tips on how to start a parent advisory group. She says you need to start a conversation with the school system, sit down with other groups such as school committees and follow other states that have had success in this area. Educate yourself on special education laws and make sure the school district understands the importance of inviting parents to the table for these discussions.

You can learn about the Federation for Children with Special Needs here: https://fcsn.org/

To find your local state parent center

https://www.parentcenterhub.org/find-your-center/

https://www.parentcenterhub.org/the-parent-center-network/

National Guide to Local Special Education Parent Advisory Councils

https://sepacguide.parentcenterhub.org/

Advocating for your special needs child in school or as a young adult in their transition years is something just about every special needs parent will have to do. In this episode of Parenting Impossible, Annette talks about how important it is to advocate properly for your loved one.

Her guest this time is Ellen Chambers. Ellen has devoted her career as an advocate by helping families, educators and agencies secure proper special education services for school children with special needs. Ellen is also the founder of SPEDWatch, an organization in Massachusetts that works to make sure all special education students are provided with the education they are legally and morally entitled to.

Ellen talks about IDEA which is the Individuals with Disabilities Education Act and how it is aimed at ensuring all students with disabilities have a free and appropriate education. Much of her work is based off this law that was passed in 1975. It ensures education as well as extending beyond academics.

Annette and Ellen also discuss that when working with your school system, they should have a plan in place to ensure a proper education and that it should at some point, include post-secondary goals to prepare your student for transition. That includes basic living skills, employment and the training to gain meaningful employment.

Ellen says that there are still some school districts that do not understand their legal obligations and it is up to you as an advocate to be aware.

Ellen and Annette talk about your rights to have an independent evaluation of your student's program and that you also have the right to choose your own evaluator. You can request that the school district pay for that evaluation as well. But be careful because the school district does not have to agree with the final outcome of that evaluation.

Ellen offers listeners her top tips for advocating for your student and young adult. She says to make sure you understand your child's abilities and disabilities, strengths and skills that need more attention. Build a strong independent clinical team for your loved one. Also, know how the system works, know your rights and know when to exercise those rights.

She also says it is important to behave in a professional manner when dealing with your school system. Tensions can run high at times, but it is important to stay calm whenever possible.

And she says, let your child develop at their own pace.

If you need some advice on how to advocate for your special needs loved one, this is a great discussion.

You can contact Ellen Chambers at: [email protected]

The IDEA website with many resources can be found here: https://sites.ed.gov/idea/

Annette takes on the topic of discrimination against caregivers of those with special needs in this podcast episode. This podcast being aired during the 2020 COVID-19 crisis, it's a very timely topic as many of our special needs caregivers are uncertain about their employment future.

Rebecca G. Pontikes, is Annette's guest and is the founder of Pontikes Law, LLC. She represents employees in all areas of employment law, specializing in gender and family responsibility (caregiver) discrimination, sexual harassment, negotiation of employment contracts and separation agreements, noncompetition agreements, retaliation and whistleblower claims (in all sectors, including the government and financial sectors), violations of the Family and Medical Leave Act, and violations of the wage statutes.

Rebecca starts out by talking about how many of these issues arise out of what she calls "loose lips" comments by an employer. An employee talks about a different work arrangement due to caregiver responsibilities and an employer makes a comment that sets off a red flag for some. Someone may also inquire about family medical leave and could be put through a humiliating experience.

Rebecca and Annette also discuss stereotypes for both men and women and Rebecca points out that stereotypes are illegal when it comes to employment. She discusses how most caregivers are covered under the ADA and how many states as well as cities have implemented their own set of laws and regulations regarding family leave and caregiver responsibilities.

Rebecca suggests as a resource to look at a number of avenues such as the Human Rights Commission in your state as well as www.Worklifelaw.org which has resources for caregivers and others.

As far as laws regarding family leave and unemployment, it can vary by state and by the size of the business, so it is a good idea to understand this and do your research.

But what can happen during a crisis such as COVID-19? Rebecca says you need to understand current unemployment benefits, job protections and stay up to date on these fast-moving laws and understand coverage for hardships can change. You need to stay on top of the news to know how your state is handling the crisis and what legislation is being passed.

Rebecca also has tips for those who may be in a situation where their employment has stopped due to COVID-19. She makes very clear that you still have rights and that family medical leave is the law. Go get unemployment benefits in motion as soon as you can and notify your employer that you understand you have those rights. Also, understand that some of the same workplace accommodations are still relevant even if you are working from home. And that you could be on unpaid leave and still have job protection.

Ultimately though the podcast discusses that we are all community and we need to act as one.

You can find Rebecca at: www.pontikeslawllc.com

This episode of Parenting Impossible, Annette talks about life Insurance. But before you turn away, you need to understand the importance of life insurance in the special needs planning conversation. It is an important topic and vital part of a special needs trust.

Annette's expert guest for this topic is Janice A. Forgays, an attorney with over 25 years of experience in this area of helping families. She is with the firm PRW Wealth Management and serves as Estate and Wealth Management Counsel.

Annette first reinforces that as a special needs family, you need to have a relationship with a trusted financial professional. It is vital to ensuring the future of your special needs loved one.

Janice first points out that you do need to be careful about choosing life insurance as well as the representative you are working with. Not all people in this industry understand the products fully especially when it comes to special needs planning.

Annette and Janice point out that life insurance can be a key component in funding a special needs trust but the way a trust is drafted is very important. It needs to be drafted by a professional with experience and knowledge in special needs.

Janice takes time to discuss the ways in which term insurance, whole life, variable life and universal life insurance differ in both protection as well as price and when you should purchase such products. Janice also makes an important point that each day you wait to purchase life insurance, the more it can cost you.

They wrap up by discussing what a survivorship policy is as well as the benefits that come with implementing this type of insurance policy.

Life insurance is a topic you need to understand and a discussion you need to have as a special needs family.

You can connect with Janice at her website here: https://prwwealthmanagement.com/

Annette takes this podcast episode to answer some questions from listeners about special needs planning. Many questions come in from her dedicated podcast fans about all types of topics related to special needs planning, law and other important topics.

Annette first takes a minute to recognize that many in the special needs community are concerned about the Coronavirus as some may be more vulnerable than others. Annette and her team at Special Needs Law Group are doing everything they can to provide comfort as well as any type of guidance they can as we all acquire more information.

The first question Annette covers is how to name individuals in various documents such as trustees, guardian, power of attorney, or heath care proxy. These people can be for yourself or for a family member such as a special needs child. She talks about the importance of these roles in special needs planning and how to have this conversation with these people.

A question related to her first question that also came in was, what happens when I ask someone to serve a role and they say no? Annette indicates that a person is not required to serve in any role in a special needs plan. It is an individual choice. A person nominated for a role still needs to agree to that role. Annette answers the question about what happens when a person that has been nominated, is no longer fit to serve that role.

Annette talks about letters of intent where a person needs to notify that person that they have been nominated to be a trustee or guardian. How should you go about doing that and what you need to think of. Letters of intent also inform people about your wishes for your loved one. Some of these wishes are simple and some more complex.

Annette also answers the question the difference between an ABLE account and a special needs trust. She points out and explains the two are very different.

Learn more about how Annette and her firm help special needs families through these issues and challenges. https://specialneedscompanies.com/

Annette goes "live" in this special podcast episode. She takes the microphone and heads out to the Federation For Children With Special Needs Conference in Massachusetts to talk with folks about a number of topics important to the special needs community.

Annette speaks about the topic of transition planning which she has covered before on the podcast with various trusted experts. Part of being a special needs parent is understanding and going through the transition process as your loved one approaches the age of 22.

What are the most challenging parts of the transition process as well as what are people's thoughts on larger communities for those with special needs as well as group homes? And why hurry up and wait is part of the process. Other families discuss their challenges and concerns about the transition process.

Annette talks about trusting and relying on our school systems to educate and advocate for our special needs loved ones properly. What happens when the relationship between parents and schools gets comprised and what can we do about it?

Annette also has a discussion about person-centered planning and how important that is to the overall plan for your special needs loved one.

And she speaks with siblings and their experiences in helping out the family from finding a job, job training and more. She also speaks about helping that family member that may not speak English as a first language and how to attain special needs services.

Find out more about the Federation For Children With Special Needs here: https://fcsn.org/

On this episode of Parenting Impossible, Annette sits down with Yariela Brandao, founder of byond 22, an organization that helps the families of young adults in their transition years. byond22 recognizes that there is a great need for many individuals with disabilities that need assistance transitioning from special education to adult services.

Yariela has taken her years of advocating for her own daughter who is deaf and blind and used her knowledge and passion to help others through these challenging years of transition as well as succession planning.

Annette and Yariela have many life experiences in common which you will hear on the podcast.

Yariela speaks about coming to the United States from Panama with her daughter and enrolling her in The Perkins School in Massachusetts. While it took many adjustments and work, her daughter finally got comfortable with her surroundings and began to make progress. However, the topic of transition to adulthood at age 22 came up and Yariela began to feel that pressure and uncertainty.

There was a period of time where Yariela admits she ignored the issues she was facing but there came a time where she began to gain strength and confidence in her own abilities to take this challenge head on and advocate for her daughter and what was ahead.

She says the first step is to recognize that the issue of transition is not an option and you will have to take it on. Change is coming whether we like it or not and you have to be a part of it.

Yariela also says that for her situation, that she needed to have certain goals and objectives in place to make sure she was getting the right results and future for her daughter. She laid out specific goals such as living arrangements and how close she wanted her daughter to be to home and began that process.

Yariela and Annette discuss some of the other actions she took to ensure her daughter would continue to transition well into adulthood and beyond.

She wraps up by talking about all the assistance that byond22 provides families and the resources that are available to anyone on the organization's website.

Find out more about byond22 and find some of those valuable resources on the website.

http://byond22.org/

Annette kicks off part two of her interview with Dr. Sharon Saline, a licensed clinical psychologist, a leading expert on ADHD and the author of the very popular book, What Your ADHD Child Wishes You Knew.

This time, Annette and Dr. Saline discuss executive functions, how to understand them better and how to maximize these critical life skills for your child with ADHD. Dr. Saline says that for many with ADHD, autism or other learning challenges, executive functions can be challenging to manage.

Dr. Saline talks about some of the 11 executive function all humans should have including working memory, emotional control, attention, planning and organizing as well as time management and meta cognition.

She says that technology has played a role in the challenges we face with executive functions and she says that when we are tired, that's when our executive functions suffer the most.

Annette and Dr. Saline discuss executive function coaching and the pros and cons of having the parent conduct this with their child. If it does not go well, it may be best to hire a professional and she talks about how to find a good match.

And Dr. Saline discusses the important topic of shame in this episode which can be a major challenge with the neurodiverse population. Shame as she indicates is related to low self esteem and feeling bad about who you are and some of the actions you have taken. She says shame teaches us nothing and is sometimes related to feeling not accepted.

Dr. Saline also takes time to discuss anxiety and how this can foster a depletion of your coping skills.

She ends her episode with Annette and reinforces that positive self-talk is a key component in helping your child with ADHD and that you cannot forget to celebrate the positives.

You can find Dr. Sharon Saline including a link to her book here: https://drsharonsaline.com/

Annette talks about how to be a great parent of a child with ADHD this week. Her guest is Dr. Sharon Saline, a licensed clinical psychologist, a leading expert on ADHD and the author of the very popular book, What Your ADHD Child Wishes You Knew.

Dr. Saline first discusses what ADHD actually is and walks listeners through what it takes to accurately diagnose a person whether they are a child or an adult with ADHD. She says that the symptoms that are used to diagnose a child versus and adult can be different depending on the age. She mentions that ADHD can change over time as we get older.

Dr. Saline talks about how she came up with the title for her book. As she spoke with both children with ADHD and their parents, she realized that not everyone was on the same page and there was a disconnect in many cases. Children she spoke with said that they really wished their parents would meet them where they were in life and try to get a better understanding of ADHD as well as offer more compassion and focus on the positive things they accomplish. But she says that sometimes, honest conversations can lead to chaos.

Dr. Saline goes through her five C's for being a better parent to a child with ADHD.

The first is self-control and that goes for both the parent and the child with ADHD. Everyone involved needs to know how to better manage feelings.

Compassion is the second on the list and once again, taking into consideration both child and parent. She says it is important to meet your child where they are.

Collaboration is next and involves letting the child have their say in matters they care about. Do not always dictate how things are going to go. They need to be part of the process.

Dr. Saline says consistency is key to parenting a child with ADHD. In short, do what you say.

Her last tip is celebration. We must as parents, celebrate the wins of our "out of the box thinkers."

Dr Saline shows her expertise in this area and gives listeners some key takeaways at the end of this podcast on ADHD.

You can find Dr. Sharon Saline including a link to her book here: https://drsharonsaline.com/

This week, Annette talks about the stress, challenges and hardships of caregivers and parents of those with special needs. Her guest to discuss this important topic is JK Whisenant.

JK provides counseling in a diversity-based practice to adults providing individual and couples therapy, small groups and psycho-education/training. JK treats parents and caretakers of special needs populations helping them navigate through the accompanying stress, depression and anxiety.

Annette and JK discuss just how critical it is for someone who is a caretaker or a parent of a person with special needs to make sure they take care of themselves, both mind and body. Often times, people do not take good care of themselves and the result can be devastating.

JK walks listeners through some of the signs of stress including no sleep, or, too much sleep or your eating habits are suffering. Thoughts can be out of control such as wanting to hurt others or hurt yourself. Anger and rage are part of the clear signs. And JK says that when you are afraid of your own feelings, that is a clear indication of too much stress. JK also states that if you are human, you need help.

JK says that you need to be careful of comparing your life in any way. That includes comparing yourself to others and comparing your special needs loved one to others with special needs.

JK talks about how to find a qualified therapist that can help guide those who take care of individuals with special needs and cautions listeners to go into a relationship with a therapist carefully. She has tips for making sure they understand special needs and how to make sure they comprehend parents and caretakers and how you deal with taking care of others with disabilities.

And JK talks about her tips for self-care including breathing, mind and body, connecting with other parents and finding the right groups to join for support.

If you as a parent or caretaker have felt stressed out and alone in any way, this is a must listen to podcast.

JK's Blog https://gshcounseling.blogspot.com/

Email [email protected]

You can find JK on LinkedIn and Twitter.

http://linkedin.com/in/gshcounseling

https://twitter.com/gshtherapist