April is Autism Awareness Month! Autism Sprectrum Disorder (ASD) refers to a broad range of conditions characterized by repetitive behaviors, lack of social skills, difficulty with speech and non-verbal communication. Autism affects 1 in 36 children in the US and boys are nearly 4 times more likely to be diagnosed. I would like to share my personal experience with autism.
I have a 9-year-old son with Down Syndrome and always knew there was something else going on with him. Hunter had showed autistic mannerisms since a toddler but I thought it was attributed to Down Syndrome. Hunter was afraid of noises, even the low hum of an air conditioner would bother him. He'd rock back and forth, refused to wear any hats or noise cancelling earphones, didn't like certain textures, made throat noises, and began stimming. These behaviors seemed to peek at 5-6 years of age. In fact, I told his primary physician that it felt like stimming had taken over my son's life because he was stimming from the time he woke up until bedtime! That is when I was referred to a place that specialized in autism testing and therapy. My son was officially diagnosed two years ago and I have learned a lot, yet there's still so much more to learn! Autism is a world all its own and there is no one-size-fits-all approach. We are currently on a waiting list for an ABA therapy program. I am appreciative of the specialists that make up Hunter's care team. He is on medication that has helped with some of his disruptive behaviors, and I am hopeful for the future! This does not happen overnight; it has been a trial-and-error process so try to keep an open mind if you are a caretaker. I encourage any parent to connect with others in similar situations. I personally joined a few online dual-diagnosis groups on Facebook. It makes a difference to know that you are not alone as this road can be challenging. -Melisa Miller (Ohio P2P Supporter)
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March 21 is a day set aside to bring awareness to and celebrate Down Syndrome globally. Trisomy 21 is a genetic condition caused by an extra chromosome in the 21st position. That is why 3/21 was chosen for World Down Syndrome Day.
People with Down Syndrome and those who love and support them continue to advocate for equality and inclusion. Some people choose to wear blue and yellow to show their support on March 21. Others wear crazy and fun socks because chromosomes are shaped like socks! So, how will you be joining us in celebrating WDSD? When you are the caregiver of someone with special needs, you focus on your loved one's physical, emotional, and social needs. You're also their appointment setter and greatest advocate! You must keep track of medical records, therapy schedules, IEPs, and well...everything else! This takes planning and organization. Here are some ways you can organize your life.
DECLUTTER: physically
It can be difficult when searching for Christmas gifts that children with special needs will enjoy. We put together a list of some items we think your kids might enjoy this holiday season including the shopping links for easy access. (No commissions are made and no specific gifts are endorsed by DSAGT) Happy Shopping!
A Stable account is simply tax-free savings for disability related expenses. These savings and investment accounts are for individuals living with disabilities. Stable accounts are made possible by the federal Achieving a Better Life Experience Act (ABLE) of 2014.
This allows one to save and invest money without losing eligibility for public benefits programs, like Medicaid and Supplemental Security Income (SSI). They’re also not subject to federal tax but must be used on qualified expenses. Qualified expenses are geared toward improving one’s health, independence, and quality of life. This includes basic living expenses, food, housing, utilities, house modifications, transportation, assistive technology, healthcare expenses, funeral and burial costs, education, and more. Who is eligible? A disability that began before the age of 26. A person living with a disability for at least one year or expects it to last at least one year. Someone eligible for SSI/SSDI due to a disability. Stable accounts are free to open online and take less than 10 minutes. It requires an initial deposit of $25. You can open an account for someone as their guardian, spouse, parent, grandparent, sibling, or authorized legal representative. Family and friends can contribute up to $17,000 per calendar year. This can be an alternative gift idea for holidays and birthdays! Balance must stay below $100,000 or public benefits might be affected. OHIO STABLE RESOURCES: Customer Service 1-800-439-1653 M-F 9am to 8pm EST team@stableaccount.com www.stableaccount.com If there's anything that will teach you to be flexible-it's parenthood. Kids will keep you on your toes, especially with food preferences. Halloween is no exception! Whether you have a special needs child who doesn't like candy or a typical child who prefers cheese over cookies, it's beneficial to have alternate choices. Stay flexible!
DSAGT is very excited to welcome Denise Dahl, MPA to the team! Denise will be serving as DSAGT's Development Director and overseeing the organization's fundraising efforts. Denise is the owner of Epiphany Planning & Development consulting to businesses and governments in strategic planning, economic development, and workforce engagement/training. She also works within the nonprofit world and has over twenty- five years of proven experience. She has been a past certified consultant for Standards
for Excellence Institute promoting excellence in nonprofits, a past member of the Association of Fundraising Professionals, and member of the Grant Professionals Association. She has also run nonprofits, as well as sat on numerous nonprofit boards and fundraising committees. In addition to working for and with nonprofits Denise has taught Nonprofit Leadership for Bluffton University. Occasionally Denise also teaches (and has taught) at BGSU, Trine University, and the previously mentioned Bluffton University, as an adjunct professor utilizing her Master’s degree. Denise has various continuing education certifications from the University of Michigan, Northwestern, Stanford, and has participated in strategic, economic, nonprofit, and workforce development through numerous entities ranging from appointment by the Governor of Iowa to the Vision Iowa Board, writing U.S. Senate Sub Committee testimony, to various local boards such as Northwest Ohio Human Resource Association, Great Lakes Economic Development Advisory Board, and the University of Toledo’s College of Business’s Advisory Board.
he Buddy Cruise is totally inclusive! The positive impact and awareness our group brings to all of the other people on the cruise is what makes it especially awesome. The Buddy Cruise isn’t just a fun vacation with like-minded people, it’s also a conference at sea. Coffee talks each morning on a variety of topics and educational workshop sessions geared to different age levels and interests. I attended sessions on estate planning, self-advocacy, Moyamoya disease, and vision issues. We also got to mingle with movie stars Zack Gottsagen (The Peanut Butter Falcon) and David DeSanctis (Where Hope Grows). Zack gave two presentations, we watched his movie, and we able to ask him (and his mom) questions. There were also many fun activities planned like the yearbook signing meet and greet, Zumba led by Megan Bell a self-advocate who has Down syndrome, dances, scavenger hunts, riding the Flowrider, meeting new friends, excursions at the ports of Aruba and Curacao, and more. Did I mention dances?
The amount of awareness and education the Buddy Cruise organization puts in all year long is phenomenal. It’s not just a cruise once a year. It’s a year round commitment to building inclusive experiences, building inclusive communities, and supporting others around the globe. We can’t thank the Buddy Cruise and all of the volunteers enough for all that they do and for putting together this amazing trip! The Down Syndrome Association of Greater Toledo (DSAGT) is excited to announce that they have created an organizational endowment fund with the Greater Toledo Community Foundation.
The Greater Toledo Community Foundation is the community foundation serving the Toledo region, including northwest Ohio and southeast Michigan. Since 1971, more than 1,000 funds have been created with a combined market value of $329 million. In 2019, the foundation provided $17.4 million in grant funding. In 2020, DSAGT was named as a beneficiary of the Sharon Rutter Estate. DSAGT is deeply humbled by Ms. Rutter’s generous decision to support the local Down syndrome community and it is due to her gift that the organization was able to establish this endowment. The Down Syndrome Association of Greater Toledo Endowment Fund will directly impact future generations to come. This funding will allow DSAGT to continue strengthening and growing the programs and services they offer to individuals with Down syndrome and their families. Furthermore, gifts made toward the endowment will grow the principle balance, allowing for larger annual distributions that will strengthen the organizations sustainability for many years to come. Through working with the Greater Toledo Community Foundation, the organization can also now accept publicly traded securities, closely held stock, life insurance policies, real estate, and other unique donations. “Our board felt this investment was crucial to diversifying our revenue streams to ensure our organizational future. This would not have been possible without the incredible work of the DSAGT Board of Directors and our Director, Krista!" says Ali Kingston, DSAGT Board President. “I want to thank Sandy Wiley the executor of the bequest from Sharon Rutter. Without the generous donation from Ms. Rutter and assistance from Ms. Wiley, this fund would not have been possible.” If you would like to support DSAGT and make a gift to the Down Syndrome Association of Greater Toledo Endowment Fund, you can do so by clicking the link below and you will be directed to the Community Foundation website. Tell us a little about yourself...
I am the Board President for DSAGT. I currently live in Washington and am an attorney at a nonprofit law firm. When did you join the DSAGT Board and what encouraged you to become a DSAGT Board Member? I joined the DSAGT Board at the end of 2019. I was looking for an organization with a great community that would allow me to do more than just write a check each month. This Board allows me to utilize my professional skills and fills up my cups on days that I feel drained. What are you most excited to help DSAGT accomplish in 2022? Navigating the pandemic has been hard and I think we have done a good job of still operating as an organization. There has been some really hard work happening behind the scenes and I am excited for the brand new programs and services that will be offered to our families. I am especially excited for the programing geared towards welcoming on new families because I want them to know from the moment they get that diagnosis there is community waiting for them. Also, I am excited for the programming we will be planning for our teens and young adults. I hope we can bring some families back that may have not been involved for the past few years. Why do you think it’s important for individuals to volunteer with DSAGT? One of my favorite quotes is, “Act as if what you do makes a difference – it does.” Whether you join the DSAGT Board, a committee, or volunteer at a single event – it will all have a lasting impact on the lives of our families and on yours. The great thing about DSAGT is that you also do not have to be local to Ohio or Michigan to volunteer. There are numerous ways you can support our community all you have to do is ask how. What are some of your favorite things to do in your free time? I love to travel. My family and friends live through the country so I spend the majority of my free time traveling to them or showing them around the newest city I have moved to. When I am not traveling I am volunteering, it is how I feel reenergized after a stressful week. |