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Q: As a parent, I want to help my child to have a healthy understanding of his sexuality. What is the best way to approach the subject during early childhood and later during the teenage years?
A: Most parents are concerned about teaching sex education to their child, but find resources are lacking to help them do it. First, it is never too young to start addressing sexuality. Schools don’t start teaching sex education until 5th grade, but it is recommended to start age appropriate education earlier, especially for individuals with Autism Spectrum Disorder (ASD). First, educate your child about gender differences early on (e.g., toddler and school age) through use of pictures, Social Stories™ and game playing. Remember to use different types of body sizes, hair style and clothing for both males and females. Use life-size posters, anatomically correct dolls and other hands-on visuals while teaching. Teach the similarities and differences between genders, while still encouraging non-gender stereotyped play and activities.
Next, teach about body parts using anatomically correct words such as penis, vagina, breasts, pubic hair and so forth as it is developmentally appropriate. They also need education on body fluids such as tears, mucus, saliva, sweat, blood, urine, semen and menstrual blood – explaining what body parts excrete what fluids. Again, use of pictures, Social Stories™ and other hands-on learning tools that are age appropriate will be the most helpful.
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Q: What is a STABLE Account and how do I know if I’m eligible? How can I use the money in my STABLE Account?
A: STABLE stands for State Treasury ABLE. It is an account for individuals with disabilities that is generally not counted as a resource when determining Medicaid or Supplemental Security Income (SSI) eligibility. Although STABLE is the name for the Ohio program established after the federal Achieving a Better Life Experience (ABLE) Act was passed, it is not limited to Ohio residents. A STABLE Account is not a trust. To open a STABLE Account, a person must qualify as an “eligible individual,” which means that the person developed his or her disability prior to the age of 26. Additionally, an eligible individual must be entitled to SSI or Social Security Disability Insurance (SSDI), have a condition listed on the Social Security Administration’s List of Compassionate Allowances, or be able to “self-certify” the disability and diagnosis. STABLE’s enrollment is only available online and offers an eligibility quiz to help individuals identify if he or she is eligible to enroll.
A STABLE Account can receive combined deposits of up to $14,000 per year from any source, including the eligible individual. The maximum amount that can be contributed over the eligible individual’s lifetime is equal to the sponsoring state’s 529 plan, which in Ohio is $426,000; however, the Account balance over $100,000 will be considered a resource if the eligible individual is also an SSI recipient.
The eligible individual has direct access to the funds in the STABLE Account and can even request a reloadable prepaid debit card. It is the responsibility of the eligible individual to use the funds correctly. STABLE Accounts should only be used for qualified disability expenses, which are expenses incurred when the person was an eligible individual, the expense relates to the disability, and the expense helps the eligible individual maintain or improve his or her health, independence, or quality of life. Examples include housing, transportation, education, assistive technology, employment training, legal fees, personal support services, health and wellness, and financial management. If an eligible individual expends funds from the STABLE Account for non-qualified disability expenses, the eligible individual will pay income tax, plus a 10% penalty, on the earnings of the non-qualified distribution. An improper distribution from a STABLE Account could also be counted as income when determining the individual’s eligibility for means-tested government benefits, like Medicaid or SSI, so understanding the rules and keeping accurate records is important.
For more information or to establish a STABLE Account, visit www.stableaccount.com or call 800-439-1653.
-Amanda M. Buzo, Esq.
Amanda M. Buzo, Esq., is the Executive Director of Community Fund Management Foundation, a non-profit special needs trust advisor. Prior to joining CFMF, Amanda was a special needs and estate planning attorney.
[Opening photo: stableaccount.com]
Among the hundreds of ways Milestones provides support to families and individuals with ASD, our free Helpdesk is perhaps the best way to start. Our knowledgeable team features over 63 years of combined experience in the fields of Early Childhood & Special Education, Mental Health Counseling, Behavioral Intervention, Social Work and Coaching.
Our Helpdesk team includes Milestones Program Director Beth Thompson, Social Worker Helena Farkas, Teen & Adult Coordinator Haley Dunn and Coaching & Referral Specialist Monica Chukayne.
“The Milestones team’s persistence in gathering data and communicating with the district is inspiring me not to give up on my children’s needs as their skills are improving after these long and painful processes,” says parent Grace Lin-Fadel. “It is worthy to keep going after seeing the benefits for our children. I am lucky to know and learn from Milestones. I thank them for sharing their experience.”
Get to know the hard-working individuals who can help you get connected to schools, camps, tutors, doctors, therapists, support groups and more.
Beth Thompson, MSSA, LSW; Program Director
Whether students are college or career bound, Beth is instrumental in helping teens successfully transition to adulthood. She received her Master’s degree from Case Western Reserve University’s Morton, Jack and Joseph School of Social Sciences in Community Development and has extensive hands-on experience working with transition-aged students with autism. Beth’s favorite part of her job is when she can assist a young person in finding and developing their unique talents.
Helena Farkas, LISW-S; Social Worker
Before coming to Milestones, Helena worked extensively with the special needs population as a social worker at Metro Health Medical Center, where she helped families navigate the medical and community systems. At Milestones, Helena has coached families, individuals and professionals to access the multiple resources that promote education, health and independence. Her favorite quote: “If families are given enough time and information, they will make the right decision.”
Haley Dunn, MA, LPC; Teen & Adult Coordinator
Haley assists individuals crossing the bridge from school into the adult world. She is also has experience providing mental health counseling services to all age groups. She has a deep passion for connecting people to their community to live out their fullest life. The best part of her work is when individuals are able to become an advocate for themselves in order to be as successful as possible in their education, work, community and independent living.
Monica Chukayne, Coaching & Referral Specialist
Monica is dedicated to ensuring the success of those with autism and special needs reach their full potential and helping them to achieve lifelong success from birth to adulthood. As an Educator and Intervention Specialist she has a wide range of experience working directly with individuals with mild to intensive needs. She could not imagine a more rewarding and impactful vocation. Her favorite quote: “Learn from yesterday, live for today, hope for tomorrow.” -Albert Einstein
Our 5th Annual Strike It Big Bowling Extravaganza is just two weeks away!
The event, presented by Davis Automotive Group, will take place Sunday, April 23 from 11 am to 3 pm at Freeway Lanes of Solon and Buckeye Lanes in North Olmsted. In addition to bowling, there will be food, face painting, balloon animals, a raffle and opportunity to learn more about autism.
Proceeds will directly support local families impacted by autism through Milestones’ free Autism Helpdesk, a service that allows families to call professional staff for guidance, local resources and information at each and every stage of their child’s development.
Hear about this fun-filled day from some our families who have attended in the past.
“Our whole family really enjoys the Milestones Strike It fundraiser. My husband and I love that it’s a comfortable and judgement-free event. And our kids have a blast bowling and just running around being silly. It is so nice to be with other families who are on similar journeys. We are really looking forward to this year’s event!” –Leslie Dorsey
“As a School Psychologist, I’ve referred many families to Milestones for resources in our community. Parents have shared immense satisfaction with the information they’ve received over the years. The Milestones office and website provides functional and helpful information for parents, family members, guardians, individuals with ASD, educators, administrators, medical & legal professionals and safety professionals (police & fire departments) that is extremely valuable. I find the yearly conference to be beneficial as well and thoroughly enjoy the myriad of sessions available. I’ve learned SO MUCH over the past 10+ years and enjoy sharing with my colleagues, students and their families!” – Edie Ungar-Shafron
“Milestones is an invaluable resource to members of our local ASD community who are looking for support, education and coaching. Strike it Big is a fun, family-friendly bowling event for everyone and the money raised allows Milestones to continue its mission. Everyone in attendance enjoys this day – from very young children to older adults. It feels good knowing that we are making an impact in the lives of children and adults in the autism community.” –Allison McMeechan, Strike It Big Event Chair
“Our family has been so inspired and humbled to be a part of fundraising for Milestones. The Strike It Big Event is a wonderful opportunity to have fun, meet wonderful people, and share stories, while helping such a great cause. We would encourage anyone to participate in this family friendly and enjoyable event.” -Kristen, Shawn, Noah and Emma West
Our autism journey began during a routine checkup when our son Miles was 3 ½ years old.
When the exam was over, and Miles looked good and healthy, the doctor asked if we had any concerns. My wife asked a simple question about Miles’ speech development. Yes, Miles spoke and answered questions, but he never asked questions and most people didn’t understand him. There was never conversational speech. She mentioned his uncanny ability to mimic and recite entire episodes of his favorite shows, unexplained meltdowns in the car and on shopping trips, and his amazing talent of writing and drawing in the exact fonts of original logos he saw.
The doctor mentioned “the spectrum” during the appointment and recommended testing through the county. My wife asked, “What spectrum?”
My wife didn’t leave the appointment with pamphlets, guides or referrals. She left stunned with the realization that there were medical terms for some of Miles’ behaviors. She had a million questions and no answers.
Within days, we Googled everything we could on Autism Spectrum Disorder (ASD) and asked many questions. Unhappy with the county testing experience, my wife was certain we should find specialists to evaluate Miles before letting the school district make decisions on his education. We are forever grateful for recommendations to see Dr. Christine Barry and Dr. Nancy Roizen at University Hospitals for initial testing and diagnosis.
Years of Applied Behavior Analysis (ABA) therapy, physical therapy (fine motor), intensive private speech therapy, in addition to school programs during preschool and elementary school, followed. These were intense, stressful years for Miles and our entire family, but critical components to his development and success in a typical school setting, which was our goal for him.
We celebrated progress, agonized over setbacks – Miles stopped walking down stairs, wouldn’t go on playground equipment, became a very restrictive eater, had severe meltdowns if we drove on certain roads, developed unexplained rashes and sensitivities to fabrics and odors, for example.
For me, once I learned of my son’s diagnosis, I quietly discussed it with some close friends. It’s not something that you share with everyone as you try to face the tidal wave of emotions and worries that wake you in the middle of the night. But a friend told me an encouraging story about someone she knew with a 6-year-old son with autism. We set up a lunch and I was amazed to learn how similar his son had been at Miles’ current age.
This friend cited several therapies with acronyms that I had never heard of before. He mentioned that Milestones Autism Resources had been a big help to him. Since we were definitely in need of help, I visited the Milestones website and couldn’t believe the amount of local resources and activities listed. When we learned Miles qualified for Extended School Year (ESY), we used Milestones’ guidance and enrolled our son in Friendship in Teams (FIT) Camp.
I will never forget the feeling I had as I walked out of the building, leaving Miles on his own with people he had never met before. I was worried, even a bit scared, that I would receive a call that he wouldn’t be able to make it through the day. But that call never came. The staff at the camp knew exactly how to work with him. I went from feeling alone to feeling like I was a part of a sub-culture – almost a movement – to help these children become all they could someday be. It was an amazing feeling of empowerment compared to the lack of control we had just experienced a short time earlier.
My first year at the Milestones Autism Conference was just as powerful.
Here was a large group of professionals and parents who spend their lives helping these children and young adults. In just days, I learned more than I did in the previous year of doing autism research on my own. I had contacts in every aspect of what Miles would need. It was exhausting, but rewarding and empowering, too. I know with certainty that Miles would not be as far along in his development had I not attended the conference. I also appreciated hearing different perspectives of how people approached their care. It helped me understand that the treatments that helped my son may not impact the next child in the same way. Each child is so different, there is no absolute right and wrong in terms of solutions. I also witnessed overwhelming love, not only from parents, but also from intervention specialists and a host of others who help parents and children.
Milestones was started by parents who wanted to help each other as well other families struggling with ASD. I have met countless parents who have shared so many important lessons that I would never have learned myself. It makes life so much easier to glean wisdom acquired by those who have faced the same issues.
Many parents feel alone in this journey, but Milestones helps connect us with the incredible supportive community we have here in Cleveland. You never have to feel alone if you have Milestones on your side.
-Phil Irvin
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