Special Needs Living Michigan - Detroit Metro - May 2024 Digital Issue

GREENLEE/JACKSON

meet the FAMILY

PHOTOS BY 21 VINES

PHOTOGRAPHY

ISSUE PREVIEW

• PG 8-10 Featured Family: Meet the Greenlee/Jackson Family

• PG 12 Athlete of the Month: Meet Andrew Ackner

• PG 25 Advocate Like A Mother: Meaningful IEP Goals: A Guide for Parents

• PG 14-20 Pediatric Palliative Care Resources

• PG 21 STEP: Out and About in the Community with Services To Enhance Potential

• PG 22-24 Apraxia Awareness Month: Meet the Young Family

• PG 30 Childhood Apraxia of Speech

• PG 26-29 Local Events

PUBLISHER/ ADVERTISING INQUIRIES Jamie McCabe 248-882-8448 Jamie.McCabe@n2co.com

Scan the QR Code to Subscribe or Nominate:

Meet the Greenlee/Jackson Family

Athlete of the Month: Meet Andrew Ackner

BY CHRISTIA WOODFORD

Arc Michigan arcmi.org

Autism Alliance of Michigan https/autismallianceofmichigan.org/

Autism Support of Michigan https/autism-mi.org/

Behavioral Health and Developmental Disabilities Administrationwww.michigan.gov/mdhhs/ keep-mi-healthy/mentalhealth/procurement/ welcome-to-behavioral-health-and-developmentaldisabilities-administration

Michigan Foundation for the Blind and Visually Impaired Michigan Developmental Disabilities Council www.michigan.gov/mdhhs/keep-mi-healthy/ mentalhealth/developmentaldisability

Michigan Rehabilitation Services (MRS) Capital Area Down Syndrome Association www.cadsa.org

Deaf and Hard of Hearing Services (DHHS) www.deafhhs.org/

Disability Determination Bureau

Division of Aging

www.michigan.gov/mdhhs/adult-child-serv/adultsand-seniors/behavioral-and-physical-health-andaging-services/aging-services

Division of Family Resources (DFR) www.michigan.gov/mdhhs

Easterseals MORC

www.easterseals.com/MORC/

Would you like to advertise in SNL to share valuable information and help support the community? Scan to grab some time to connect & learn more about being involved: https://calendly.com/jamie-mccabe/ special-needs-living-magazine

IMPORTANT PHONE NUMBERS

Emergency Ealy On Michigan

https/www.michigan.gov/mde/services/earlylearners-and-care/special-ed-05/early-on-michigan

Michigan Department of Education: Office of Special Education

https/www.michigan.gov/mde/services/ special-education-

Michigan Family Forum

Michigan Family to Family www.f2fmichigan.org/

Michigan Foundation for the Blind and Visually Impaired Michigan Department of Health and Human Services www.michigan.gov/mdhhs

Michigan Family and Social Services Administration (FSSA) www.michigan.gov/mdhhs

Michigan State Department of Health www.michigan.gov/mdhhs

833-808-7452

800-457-4584

517-284-7290

800-772-1213

1-800-772-1213

833-633-5788

517-203-1200

517-241-5324

Michigan Statewide Independent Living Council (MSILC) www.misilc.org/

Medicaid Disability

MI Choice Waiver Program

National Alliance on Mental Illness

Preschool & Out-of-School Time Learning

www.michigan.gov/mde/about-us/mde-divisions-andoffices/preschool-and-out-of-school-time-learning Self-Advocates of Michigan (SAM)

Social Security Administration (SSA)

Social Security Disability Insurance (SSDI)

Special Education Questions

United Cerebral Palsy Association of Michigan ucp@ucpmichigan.org

Vocational Rehabilitation Services (VR)

DISCLAIMER: Any articles included in this publication and/or opinions expressed therein do not necessarily reflect the views of The N2 Company d/b/a N2 Publishing but remain solely those of the author(s). The paid advertisements contained within the Special Needs Living magazine are not endorsed or recommended by The N2 Company or the publisher. Therefore, neither The N2 Company nor the publisher may be held liable or responsible for business practices of these companies. NOTE: When community events take place, photographers may be present to take photos for that event and they may be used in this publication.

Delivering Neighborhood Connections © 2024 The N2 Company, Inc.

This section is here to give our readers easier access when searching for a trusted neighborhood partner to use. Get to know the businesses that make this magazine possible. Please support them in return and thank them if you get the chance!

ABA SERVICES

ABA Pathways (805) 551-7613

www.ABAways.com

Budding Behavior Therapy (248) 622-5191

www.buddingbehavior.hi5aba.com

ABA/ BEHAVIORAL & AUTISM SERVICES

Healing Haven (248) 965-3916

www.thehealinghaven.net/

ADULT INDEPENDENCE

Our Neighborhood Academy (248) 556-5332

www.ourneighborhoodacademy.com/

ADVOCACY

Student Advocacy Michigan (248) 372-9770

www.studentadvocacymi.com

ATHLETIC TRAINING

Autastic Athletics LLC. (248) 224-4151

www.autastic-athletics.com

ATTORNEY-WILLS/TRUSTS/ESTATE PLANNING

Chalgian & Tripp Law Offices PLLC (248) 799-2711

www.Mielderlaw.com

AUTISM DIAGNOSIS/SUPPORT

Arbor Autism Center (734) 544-5561

www.arborautismcenters.com

AUTISM EVALUATIONS & ABA THERAPY

Inspire Autism (844) 427-7700

www.inspireautism.com/

COMMUNITY SUPPORT

ASK Family Services (269) 343-5896

Work and Play Special Needs Resource Center Inc. (734) 780-6795

www.workandplaycenter.org

EMPLOYMENT AND TRAINING SERVICES

Services To Enhance Potential (STEP) (734) 718-0483

www.stepcentral.org

PRODUCTS

HedgeHog Health (248) 495-7244

www.hedgehoghealth.com

RECREATIONAL/ MUSIC/ ART THERAPY

Advanced Therapeutic Solutions (734) 352-3543

www.advancedtherapeauticsolutionsmi.com

RELATIONSHIP SUPPORT/SEXUAL HEALTH

My Relationships Project (313) 489-0043

www.myrelationshipsproject.com

Meet the Special Needs Living Detroit Team

Jamie McCabe

Christia Woodford

Special Needs Living - This Magazine is – For You – By You –To Support and Connect You –Here is How You Can be Involved

Have a story to share Would you like to share a story in an upcoming issue of Special Needs Living? We want to hear from you. To share a story or to nominate someone else to be in an upcoming issue of Special Needs Living, e-mail your story ideas or nominations to Jamie. McCabe@n2co.com

To view ways to share your story in a future issue & to view the digital version of Special Needs Living Detroit/Metro: Click the link or scan the QR code: https://linktr.ee/snlmichigan Scan to view past issues of Special Needs Living

Accomplishments/ Achievements/Milestones

Looking to Celebrate all Special Needs Individuals

Some accomplishments and milestones take years... We want to recognize you/ them! Are you or your child celebrating a birthday, milestone, achievement, or accomplishment? We want to recognize you – email us at SpecialNeeds LivingDetroit@n2pub.com

Calling all 501c3 organizations that support the Special Needs Community

Each month we will highlight a nonprofit for free to let the community know more about how they support and impact families and individuals with special needs. Do you run a non-profit or know of one that supports the special needs community?

Fill out your submission or scan the QR code here: www.jotform.com/ build/202466367490157

Let’s Get Social To keep up to date with all things happening with Special Needs Living

– Upcoming Events/ Socials/Gatherings –Stories and Highlights

– Ways to be Involved

– Follow us on Facebook: www.facebook.com/ SpecialNeeds LivingDetroitMetro/ Follow us on Instagram: To get the free copy of Special Needs Living Detroit Metro click or scan:

https://form.jotform. com/222635365026049

FOR ADVERTISING:

Do you run a business that supports the special needs community and is looking to connect, impact or advertise in Special Needs Living magazine? Scan the QR code to set up a time to connect or Email Jamie. McCabe@n2pub.com.

Greenlee/Jackson

MEET THE FAMILY

Romona Greenlee is the godmother of Ayden and Braylon Jackson. She has had the boys since they were 18 months old. When she got the boys, she knew she had to do something to support them as they were crying all the time and breaking down emotionally. They were also non-verbal. She started at Oakland Family Services (https://

www.oaklandfamilyservices.org/) to receive support for the boys. She then met Ms. Lisa, who referred her to Easter Seals (https://www. easterseals.com/MORC/) because they were non-verbal and had behavior issues. Easter Seals gave her tremendous support for the boys and how she can support them. They set the family up for a LUNA assessment,

a comprehensive trauma assessment. Easter Seals was able to diagnose them with separation anxiety disorder, PTSD, and autism. They then went to OLHSA (https:// www.olhsa.org/en-us/head-start), Mr. Doc Smith with the Head Start program where the boys started ABA therapy. They were soon diagnosed with disruptive behavior disorder with

KENDRA ROGERS, MS - EDITOR IN CHIEF • PHOTOS BY KENDRA ROGERS

FEATURED FAMILY

“Good support groups that allow you and your child to learn strategies are the best support”.

— ROMONA

trauma. Romona had to get evaluations through the special education department with Dr. Jamison and her team where they were evaluated and given an IEP with an ECDD (early childhood developmental delay) diagnosis. Dr. Jamison has been a kind and available resource for the trio since day one. Romona shares that “she impacts the surrounding community with her skills and compassion”. Dr. Jamison surrounds herself with a skilled and loving team to serve the community. After their more complete evaluations, the boys went to Peace Academy, doing 1/2 days, due to their separation anxiety and being non-verbal. The other part of the day was when they went to ABA therapy. They then were referred to St. Joseph’s (now Trinity in Pontiac) (https://www.trinityhealthmichigan. org/find-a-service-or-specialty/ rehabilitation-and-physical-therapy/ speech-therapy) for occupational and speech therapies. To continue learning about their special brains, Romona began genetic testing through the Beaumont neuroscience division (https://www.beaumont.org/locations/ beaumont-neuroscience-center) and sent DNA samples to Germany.

After graduating from Peace, they went to kindergarten in a general education setting with resource room support at Owen Elementary. The boys were given a 504 with a behavior plan before going to the face-to-face

program and getting diagnosed by Dr. Harris with ADHD and sensory issues. It was then that Romona realized the boys needed a smaller classroom setting. In the following years, the boys were placed into the EI program with the support of the staff and educators at Owen. Ayden is now at Walt Whitman under the supervision of Dr. Powell (principal), Ms. Boyd (teacher), and Ms. D (paraeducator). Braylon is now at Herrington Elementary under the supervision of Mr. Mickens (principal), Ms. Baker (teacher), Ms. Vaden (paraeducator), and Ms. Amy (paraeducator).

During these times, Romona knew she needed resources for the boys, so she reached out to the community to find all the resources she could to support them. Being a paraeducator herself, Romona knew where to go for resources. Some of the resources she found were: Michigan Alliance (https:// www.michiganallianceforfamilies. org/), which supported her during the IEP process; the PAL program with Jay Hicks which mentored the boys; with Traciee Hirsch at Pontiac United which allowed the boys to participate in baseball and martial arts; Center for Success (https://www.center4success. org/ ) which supports the boys reading literacy and are supported by Mary-Jo Ebert and Kendra Pitt; Ecommunity outreach services (https://www. ecommunityoutreach.org/), a parent and literacy program with CEO Eisher Banner; Pontiac Youth Assistance

(http://www.pontiacyouthassistance. org/ ) with Thomas Swieboda, a mentoring program for the boys; Clarence Phillips’s Ascend Foundation “Junior Pioneer” (https://www. theascendfoundation.org/) with Makayla Smith, a mentoring program with Kaino Phillips; Pontiac Recs-Be stress-free program with Cassandra Thomas that educates and promotes positive coping skills; Resource and crisis center with Marega DeLizio and Paula Eifler, a parent support resource; and Project excel (https://www.pontiac. k12.mi.us/programs/project-excel), a Pontiac school-based program that supports students with their academic and social skills. Romona also receives support from her church community including Pastor Earl Crump, Sister Ernestine Crump, Brother Yanci, and Sister Yanci. The support Community that Romona has built over the years serves to help with therapies and stress relief for Romona and the boys.

Romona urges families to get support from the local community or church for themselves and their children. She says, “Good support groups that allow you and your child to learn strategies are the best support”. She notes that the boys are now verbal due to all the therapies and programs they have been part of including ABA, baseball, and martial arts. Romona also shares a reward schedule that

helps the boys feel empowered to meet their weekly goals. She tells other parents how important it is to ensure vacation destinations, like their favorites of Las Vegas, Houston, and Frankenmuth, MI, have extra plugs and electronics outlets and schedule activities on vacations to ensure the kids know what to expect when.

To care for herself while working with the boys, Romona enjoys spa days and relaxing in the recliner. She also started a social circle meant to bring families together and encourage relationships between parents who share the struggles of raising kids with special needs.

Aside from martial arts and baseball, the family enjoys going to church, playing at Dodge Park, Innovation Park, or Riverside Park, watching Naruto or My Hero together, watching the Detroit Lions or Tigers, and eating burgers and pizza together from their favorite restaurants while playing Connect 4 and Match Make Cards. Ayden and Braylon also enjoy time with their dogs Fia, Fee, and Zytia who serve as comfort animals to the boys.

Romona emphasized the need for support throughout the community that changes to meet the boys’ ever-changing needs. Support for herself is also crucial to the trio’s continued success and happiness.

SPECIAL THANK YOU TO:

Amanda Ziegler for helping me write our story.

Denise Harris for CPR, AFD and baby-sitting training for kids healingheartssafetyservices.com

Henry Jackson - Behavior Specialist

Deleah Nicolle identifyyourdream.org

Meet Andrew Ackner

What would you like the Special Needs community to know about you? What have been some of the challenges you have experienced and how have you overcome these challenges? Just how much I love the thrill of working on my game in tennis and bowling, and competing at a high level in both of my sports, training to be the best I can be as a representative and role model for the autism community and my children.

Advice you have for others in the Special Needs Community Don’t ever let anybody tell you what you can and can’t do.

Something you would like your parents to know How much she set me up for success in the way she raised me.

What sports or extracurricular activities do you participate in? I compete at a high level in bowling and tennis. I also spend a lot of time training in the gym for the purpose of training my body to be more physically fit specific to my sports.

Tell us more about your experience with those activities (how did you get started? What do you enjoy most? Any highlights of your experience so far?) I got started at both at a very young age, my mom recognized I needed structured physical activity to self regulate and develop and had me in

many sports programs. Tennis and bowling were the two that stuck and are my life’s work to be as good of a player and coach as I can be in those two sports.

Some recent bowling highlights include shooting my first 700 series in March of 2023 at The Twin Soo Classic in Sault Ste. Marie, MI and shooting my first 300 game on January 23rd in the Tuesday Night Invitational League at Country Lanes.

Some recent tennis highlights include having a highly competitive match and near upset against the 2nd seed in a singles tournament in Monroe, MI. The 2nd seed went on to win the tournament. I and a doubles partner also won an open tournament together in doubles.

Name someone you admire. What makes them special and how have they motivated you? Retired UFC fighter Chael P. Sonnen. If you know, you know.

Favorite Food Tie between beef tacos and eel sushi. Favorite Color Black and Blue Favorite Music The Ramones

Favorite Movie or TV Show The Big Lebowski

Favorite Sports Teams Michigan Wolverines Football Favorite Vacation Arizona

Follow me @ autastic_athletics

Recreational-based applied behavior analysis (ABA) is an innovative approach that combines the principles of behavior analysis with recreational activities to promote positive behavior change in individuals. This approach focuses on using fun and engaging activities to teach new skills and behaviors while also reducing challenging behaviors. We believe in naturalistic therapy that is child-centered, individualized, play-based and with the best therapists.

Pediatric Palliative Care Resources

Pediatric Palliative Medicine: Comprehensive care that focuses on improving quality of life and minimizing suffering in medically complex individuals.

Jane is an RN with the Corewell Health Helen DeVos Children’s Hospital Pediatric Palliative Medicine Team, 35 Michigan St. NE, Suite 5301, Grand Rapids, Michigan 49503 jane. lang@corewellhealth.org

STATE RESOURCES:

Children’s Special Health Care Services (CSHCS): CSHCS helps persons 0-26 with chronic health problems by providing coverage for specialty services based on the person’s health problems. CSHCS covers more than 2700 physical conditions when certain criteria are met. Note: CSHCS does not cover primary care, developmental, behavioral, or intellectual conditions.

The CSHCS Family Center: Helps shape CSHCS policies and procedures and helps families navigate CSHCS. They offer health resource information and emotional support, camp & conference scholarships, and the Children with Special Needs Fund (CSN Fund). Enrollment in CSHCS is not required. Call the CSHCS Family Center Phone Line at 1-800-359-3722, or send an email to: cshcsfc@michigan.gov

Michigan Medicaid Waivers: http:// www.kidswaivers.org/mi / Because private insurance does not cover many services children with disabilities require, Medicaid waivers allow another pathway (versus family income) to access Medicaid services, including private duty nursing & specialized therapies. They may also offer additional services, such as respite & home/vehicle modifications.

Community Mental Health (CMH): Children and young adults with behavioral health or developmental

disabilities and have Medicaid insurance may qualify for community living supports (CLS) and services, including respite, through their local Community Mental Health agency. Call your CMH Access Center & ask to be screened for services. The evaluation for the Children’s Waiver is a part of that screening.

The Family Support Subsidy (FSS): The subsidy provides a monthly payment (currently $300.36) that families must spend on special needs that occur because of caring for a child with a severe disability at home. This subsidy is dependent on family income. Call your local CMH & ask for the Family Support Subsidy Coordinator for additional information and to obtain an application. If you are unable to locate your county’s FSS Coordinator, you may call (517) 2415774 for assistance.

Michigan Alliance for Families: 1-800-552-4821 or http://www. michiganallianceforfamilies.org/ provides information, support, and education for families who have children (birth through 26 years of age) who receive (or may be eligible to receive) special education services. Each Michigan Alliance staff member is a parent or family member of an individual with disabilities. Families can connect directly to a regional Parent Mentor who can assist you in navigating the educational system and are knowledgeable about state and local resources.

Children’s Palliative Care Coalition of Michigan: Our mission is to provide resources for medical professionals, volunteers and

families caring for children with complex and life-limiting illnesses, and to ensure the availability of compassionate, comprehensive care across the State of Michigan. https://www.childpalliative.org/

Epilepsy Foundation of Michigan: Offers a variety of educational, social, and supportive services to individuals living with epilepsy. Resources include their helpline, camp, conferences, events, and scholarships https://epilepsymichigan.org/

A Kid Again. Giving Illness a Time

Out: It provides consistent, cost-free, year-round adventures for children and their families, to remember what it was like to live carefree. Adventures are ALWAYS FREE for families! www.akidagain.org

JANE LANG, BSN, RN. COREWELL HEALTH • HELEN DEVOS CHILDREN’S HOSPITAL PEDIATRIC PALLIATIVE MEDICINE

Make-A-Wish Michigan: http://michigan.wish.org/about-us/ the-make-a-wish-story/our-mission

The Rainbow Connection https:// www.rainbowconnection.org/# makes wishes come true for Michigan children with life threatening medical conditions. In addition, we provide support services to eligible wish families in need.

The Rainbow Connection https://www.rainbowconnection. org/# makes wishes come true for Michigan children with life threatening medical conditions. In addition, we provide support services to eligible wish families in need.

The Jenna Kast Believe in Miracles Foundation: Enriches the lives of Michigan children suffering from life-threatening medical conditions by buying gifts and bringing joy and hope to their lives. Along with their gift, each child receives a personalized trophy to acknowledge their courageous fight. http://www. believeinmiracles.org/

The Michigan Elks Association Major Project: Exists to help special needs children in the State of Michigan achieve their goals with funds to help with individual therapies, equipment, technology and more. michiganelksmajorproject.org

Michigan Kids on the Move at MI Kids On the Move: Home (weebly.com) offers powered ride on cars (ages 1-6) and manual mini-wheelchairs (8mo3y) to make sure all Michigan kids are on the move.

Diapers/Pullups: If your child is 3 or older (maybe even 2 yrs. old), has Medicaid insurance and is incontinent, he/she may qualify for diapers. Generally, if you have straight Medicaid, diapers are from J&B Medical Supply. With a Medicaid plan (PH, BCBS, etc.), diapers may come from local DME companies or J&B. Unfortunately, I have not heard of commercial insurances or CSHCS covering diapers/pullups.

The Charlie Waller Legacy Fund: Provides financial assistance to families facing financial difficulties due to having a child with a lifelimiting condition. Michigan residents may apply for a one-time grant. Because funds are limited, grant amounts are normally up to $1,000. See their website for details

CHARLIE WALLER LEGACY FUND | Childpalliative

Easterseals MORC: Comprehensive, multi-faceted services for families with children from birth to 18 years of age in Genesee, Kent, Macomb, and Oakland Counties. Easterseals MORC | Home

Special Needs Car Seat Clinics: Trinity Health Muskegon (231)-6726940, Secure Quest mysecurequest. com (Grand Rapids), Mott Children’s Hospital (Ann Arbor) 734-763-2251

WEST MICHIGAN RESOURCES:

Family Hope Foundation: Scholarships for therapy costs that are not covered by insurance. http:// thefamilyhopefoundation.org/

Caleb Smiles: Was formed to help children and families get access to fun activities (like adaptive skiing, horseback riding and swimming lessons), and equipment (like communication buttons and sensory items) that they may not have the budget for. www.calebsmiles.org

Lori’s Voice: https://lorisvoice. org/ The purpose of Lori’s voice is to provide equipment, educational resources, and medical assistance to children with neuromuscular, degenerative diseases, and mobility

issues. Also, check out the Lori’s Voice Application for financial assistance for wheelchair body coats @ Lori’s VoiceX-Ability Store (xabilitystore.com)

Renew Mobility: https:// renewmobility.org/ Recycling, distributing, and maintaining mobility equipment (manual & power wheelchairs, walkers, bath aides, Hoyer lifts) for those in need. If you do not have insurance, your coverage does not meet your needs, or you have slipped through the cracks and do not have financial means we are here to help. Applications from West Michigan only please. The locations are in Grand Rapids and Muskegon.

Down Syndrome Association of West Michigan: https://www.dsawm.org the Down Syndrome Association of West Michigan strives to create communities that embrace Down syndrome, empower individuals, and promote opportunities for meaningful lives.

Easter Seals: http://www.easterseals. com/michigan/ or 616-912-2081. Therapies for children with developmental disabilities such as Autism Services (including The P.L.A.Y. Project), Sensory Integration, Speech and Language, and Occupational Therapies, summer camps, respite and more.

Calvin University Pediatric Speech and Hearing & Western Michigan University Pediatric OT: https:// calvin.edu/academics/departmentsprograms/speech-pathology-audiology/ speech-clinic/ under “Pediatric Services” The Speech & Hearing Clinic on campus offers adult and pediatric speech therapy, an augmentative & alternative communication (AAC) club, and a pediatric occupational therapy clinic in partnership with Western Michigan University.

Connect to Care: https://www. connectgr.org/about/ There are a variety of barriers that families face when securing hospitality housing for guests of children’s health services in Grand Rapids. Our goal is to be an

organization that works to overcome the obstacles families face for securing hospitality housing.

Family Network of Wyoming

Family Network of Wyoming: Is a nonprofit organization that provides food, clothing, medical equipment, and other assistance to people in need. Our DME inventory includes crutches, walkers, canes, wheelchairs, bathroom aids, shower/bathtub seats, incontinent supplies 1029 44th St SW, Wyoming, MI 49509 · (616) 885-9919

NATIONAL RESOURCES:

Down Syndrome Diagnosis Network: https://www.dsdiagnosisnetwork.org Provides resources, education, and connection to other parents. It has an online network of over 50 parent subgroups based on, for example, medical diagnosis, interests, and birth year.

Love from L evi: Honors 4-yearold Levi and creates and provides customized interactive books to help kids get more comfortable with big and small hospital procedures. They proudly offer this book (customizable to each child’s unique medical journey) to all children with cancer or other serious illness free of charge. Love From Levi - Spreading Awareness, Love, and Hope

Jack’s Basket- Celebrating babies with Down syndrome! A Jack’s Basket is a complimentary gift for the family of a baby diagnosed with Down syndrome. The baskets are provided anytime from diagnosis (prenatal or at birth) up to the baby’s first birthday. https://www. jacksbasket.org/, also, on Instagram.

SOFT Support Organization for Trisomy 18, 13 & Related Chromosome Disorders https:// trisomy.org/, also, on Facebook.

The National Organization for Rare Disorders (NORD): Helps people living with rare diseases meet the daily challenges in their lives so they can achieve their best health and well-being. Their Patient Assistance Programs help with

financial assistance, caregiver aid, and educational support. Financial Assistance For Patients With Rare Diseases | NORD

Hope for HIE (Hypoxic Ischemic Encephalopathy): Is deeply committed to providing comprehensive, personalized support for each family’s journey. Our community is worldwide and represents a variety of outcomesfrom unaffected through loss. https://www.hopeforhie.org/, also, on Facebook.

The Songs of Love Foundation: Is a national nonprofit 501(c)(3) organization that creates free, personalized, original songs to uplift children and teens currently facing tough medical, physical or emotional challenges. https://www.songsoflove.org/

UnitedHealthcare Children’s Foundation: https://www.uhccf.org/

Our mission is to improve children’s lives and help families gain access to the care they need through medical grants. Helping Kids. Changing Lives.

Icing Smiles: Is a nonprofit organization that provides custom celebration cakes and other treats to families impacted by the critical illness of a child. We understand that simple things, like a birthday cake, are luxuries to a family battling illness. Our goal is to create a custom cake for the ill child, or their sibling, that provides a temporary escape from worry and creates a positive memory during a difficult time. https://www.icingsmiles.org/

Disability Discounts: http://www. dontpayfull.com/blog/free-things-andgrants-for-kids-with-special-needs

Purple Playas Foundation: https:// purpleplayasfoundation.org/ The mission of the Purple Playas is to provide support and resources in pediatric complex chronic care needs and gifting smiles to children and their families.

The Parker Lee Project: http:// www.theparkerleeproject.org While

the majority of children get things supplied through insurance, some items are not covered, or not enough supply is provided. The Parker Lee Project can help fill that gap. Supplies offered: enteral supplies (feeding bags, extenders), trach supplies, incontinence supplies, oxygen tubing and cannulas, IV tubing and care supplies, formula, general supplies (gloves, alcohol prep pads, medical tape, 2x2 and 4x4 gauze pads), diabetic supplies, suction catheters & mouth care supplies.

Wheelchair Van Assistance Program: http://www.specialkidsfund.org/ Supporting children with special needs is the core of our organization. Our mission is to provide vehicles to families of these special children across the nation to give them a chance to have the normal experiences that every child has, growing up as a kid.

TinySuperHeros: https:// tinysuperheroes.com/ sending capes to children overcoming any illness or disability. Since 2013, TinySuperheroes has empowered over 12,000 kids all over the world!

Goodrx: https://www.goodrx.com/ find the lowest price for your prescriptions.

Laughing at My Nightmare: https:// www.laughingatmynightmare.com/ Teaching Children that all people deserve kindness and respect,

regardless of their differences. We provide FREE assistive technology to people living with any disability and FREE adaptive equipment to people living with muscular dystrophy! Also, on Facebook.

Rare Science: https://www. rarescience.org/about-us/ Accelerating cures for RARE kids. RARE Science has initiated the RARE Bear program, a grassroots community-driven outreach for kids with rare diseases. Community volunteers create one-of-a-kind teddy bears for one-of-a-kind “rare” kids.

The Superhero Project: If your child or teen is living with a serious illness or special need, we would be honored to work with you. Your child will be matched with one of our artists, who will design the superhero they described, creating a visual representation of their strength, courage, and resilience. https://www. superheroprojectkids.org/

The Butterfly Pig: https:// thebutterflypig.com committed to making toys to help represent your child’s medical needs. Explore an ever-growing number of medical toys designed by a nurse on a mission to promote self-advocacy through play.

FACEBOOK RESOURCES:

• Families with Special Needs Connect-Children’s Special Health

Care Services (CSHCS) Kent County parent moderated page

• Special Families’ Corner- CSHCS Ottawa County parent moderated page

• Grand Rapids Area Autism Moms and Dads

• Courageous Parents Networktheir mission is to empower parents and families of children living with serious illness.

• Moms of Trach Babies

• A Very SPECIAL NEEDS Christmas: a group to provide amazing Christmas ideas for special needs children. After the holidays, the page opens for continued help and assistance with therapies, equipment, advice, and anything you need help with.

• 60+ FB groups for special needs family and friends: https://singingthroughtherain. net/2015/10/groups-forspecial-needs-families.html

• Rare Disease Network is your place to connect with every aspect of the rare disease community, both locally and nationally, also at www.rarediseasenetwork.net

• eSpecial Needs-providing the best adaptive equipment and therapy solutions for children and adults with special needs, also at www. especialneeds.com

SUPPORT GROUPS/ PODCASTS/BOOKS:

• http://www.amandagriffithatkins. com Amanda Griffith-Atkins, MS, LMFT is a licensed marriage and family therapist and founder of Amanda Atkins Counseling Group in Lincoln Square, Chicago, but it was not until her son was diagnosed with a rare genetic condition that she discovered her life’s purpose: to help parents of disabled children find their stride. She is also a writer, is on Facebook, and is a guest on several podcasts. See her website for details.

• The Rare Life Podcast by Madeline Cheney, a podcast about parenting children with rare medical conditions. The creator’s son Kimball and her journey since his arrival inspired the show. Episodes consist of her experiences in special needs parenting, parent guests sharing their stories, and education provided by professionals.

• Our Real Rare Life, on Instagram and Facebook.

• Mama Bear Podcast with Susan McConnell is a place for women raising children with special needs to get together and chat about life. Also, the episode with Laura Croft about estate planning for families of children with special needs has been highly recommended by a parent.

• Annette Hines’ book “Butterflies and Second Chances: A Mom’s Memoir of Love and Loss” is the true story of her special needs journey, and the struggle to secure the best possible life for her child. Annette’s Podcast is “Parenting Impossible- The Special Needs Survival Podcast” She has also been a guest on the Mama Bear Podcast.

• Courageous Parents Network: https://courageousparentsnetwork. org/ CPN is a destination created by families, for families, to support, guide and strengthen them as they care for extremely sick children.

• Love That Max https://www. lovethatmax.com “A blog about kids with disabilities who kick butt”

• Sibshops: Sibshops provide brothers and sisters of a child with a disability with peer support and information in a lively, recreational setting. Groups are held in Kent & Ottawa Counties. Contact: Andréa Vugteveen, 616-4603781 or amvugteveen@gmail.com

• Autism Support of Kent County (ASK) We work to make life better and more productive for individuals with autism and their families. In addition to our signature social groups and parent/ caregiver support group, we offer a variety of programs and events. Autism Support of Kent County | Serving the Needs of Kent County, Michigan’s Autism Spectrum Disorder Community

• Autism Support of West Shore www.asws.org

• The Parent’s Guide to Down Syndrome Cowritten by DSDN Executive Director, Jen Jacob. This book offers real stories, practical information, and lots of resources for families from pregnancy through adulthood.

WEST MICHIGAN ACTIVITIES AND EVENTS:

Family Hope Foundation http:// www.familyhopefoundation.org/

Family Hope Foundation | Events (thefamilyhopefoundation.org) Events including Celebration Cinema Sensory Showings!

Children’s Healing Center: The Center is open to anyone from birth to age 26 who is immune-compromised or vulnerable to illness, and their family. Our goal is to create a safe space for kids and their siblings to express themselves, to interact socially and to feel a sense of belonging. We have a diverse population of kids with medically complex conditions.http:// www.childrenshealingcenter.org/ Also offering a series of Dinner & Dialogue- an opportunity for parents and caregivers to find support, connect with other families, and share ways to navigate life.

Certain Hope Community Bringing Hope and Community to families raising kids with disabilities! Free events for the whole family to connect with other families experiencing the same things. http://www.certainhopecommunity.org, also on Facebook.

Compassionate Heart Ministries & Club 404: We offer a fun, Christian, welcoming, safe & social environment for individuals with mild to moderate disabilities aged 14 to 45 to come, hang-out and make friends!

Growing Roots mission is to provide a therapeutic, nature-based learning and working facility that allows all individuals to live a meaningful, satisfying life and to reach their highest potential. Growing Roots utilizes gardening and the care of rescued animals to empower those with autism and other developmental disabilities.Home (wegrowroots.org)

Autism Family Network Autism Family Network - AFN

Sidekicks West Michigan Sidekicks of West Michigan is a nonprofit organization that offers individuals with and without disabilities the education and tools to gain independence and build friendships through guided adventures in inclusive settings

throughout West Michigan. https:// www.sidekickswestmichigan.org/

Hope Network https://hopenetwork. org/events/

The Arc Disability Services | The Arc Kent County | Grand Rapids of Kent County advocates for the rights and full participation of all children and adults with intellectual and other related developmental disabilities. We strive to improve systems of support and services, connect families, inspire our community, and influence public policy. We are a non-profit, charitable organization. For an extensive list of community resources in Kent CountyDisability Services | The Arc Kent County | Grand Rapids

Sports:

• Special Olympics of Michiganhttp://www.somi.org/

• No More Sidelines https:// nomoresidelines.orgNo More Sidelines provides children and young adults with special needs an opportunity to play sports year-round and to participate in community events and outings. Based out of Norton Shores, Michigan.

• Challenge Mountain Boyne Falls, MI https://challengemtn.org/ Challenge Mountain offers many opportunities for individuals living with physical, cognitive, and developmental disabilities through year-round adaptive recreation. Register for programs by calling 231.535.2141 or emailing linda@challengemtn.org.

• MyTEAM TRIUMPH https:// www.mttwestmichigan.org/ is an athletic ride-along program created for children, teens, adults, and veterans with disabilities who would normally not be able to experience endurance events such as triathlons or road races.

• Mary Free Bed Wheelchair and Adaptive Sports -competitive teams and clinics designed for individuals with limited mobility and other physical impairments. https://www.maryfreebed.com/ rehabilitation/sports-rehabilitation/ wheelchair-adaptive-sports/

• West Michigan Miracle League EVERY CHILD deserves a chance to play baseball

• The Grand Rapids Eagles Disabled Sports Team provides athletic training for athletes (age 7 & up) with cerebral palsy, muscular dystrophy, spina bifida, visual impairments, spinal cord injuries, and other physical disabilities. The Eagles team trains throughout the year for the Michigan Victory Games, a 4-day athletic competition. We welcome members to practice with us for exercise health and team camaraderie, even if they do not decide to participate in the Michigan Victory Games event. Home | Grand Rapids Eagles Disabled Sports (greaglesdisabledsports.org)

• West Michigan Special Hockey Association mission is to offer an amateur level ice hockey program for children and adults with any developmental disorder. WMSHA is open to any player over the age of 5, male or female, who is physically able to play at any level but unable to participate in any other organized program.Special Hockey | West Michigan Special Hockey Association | Grand Rapids (westmipatriots.com)

• https://miofo.org/ The mission of Michigan Operation Freedom Outdoors is to provide improved outdoor recreation opportunities for wounded veterans and individuals with health challenges; and, to coordinate a support network that facilitates their recovery through connecting with nature. Tracked Wheelchair Reservations – Limited number of chairs available for use at Sharonville State Game Area and other areas as arranged;Accessible Hunting Blind Reservations –Limited number of accessible blinds on public land available;Hunting Guide to Assist Outdoors people – MiOFO certified volunteer helpers are available on scheduled days to provide one-on-one assistance

• Michigan Outdoor Wishmakers - Nonprofit that takes children, young adults, and veterans living with illnesses and/or disabilities on hunting and fishing adventures. www.mioutdoorwishmakers.com Also, on Facebook.

Art & Music:

• Hearts For the Arts https://www. hearts4thearts.com/ our mission is to enrich the lives of ALL people through inclusive public art classes and group events. We also specialize indisability services which include art therapy, entrepreneurial training and more. Our studio is fully accessible. We work with a variety of specific needs including (but not limited to): cognitive and developmental disabilities, mental health disorders and brain trauma injuries.

• Artists Creating Together http:// www.artistscreatingtogether.org/ Artists Creating Together empowers individuals with disabilities to learn, grow, and celebrate through the arts. By bringing together artists, visual and performing arts, and students with disabilities, we can impact the West Michigan community.

• Arts in motion studio providing our community and individuals with disabilities an artistic adventure. https://artsinmotionstudio. org/ Classes are available in visual art, dance & movement, music, drama and more

• Franciscan Life Process Center & Music Therapyhttp:// lifeprocesscenter.org/services/ music-therapy/

Equine (Horse) Therapy:

• The Barn for Equine Learning http://www.thebarnforequine learning.com/ (Lowell)

• Equest Center for Therapeutic Riding http://equestcenter. org/ (Rockford)

• Renew Therapeutic Riding Center https://renewtrc.org/ (Holland)

• H.U.G.S. Ranch https://www. hugsranch.org/ (Byron Center)

• Legacy Stables & Karin’s Horse Connection www. karinshorses.com (Caledonia)

• Fellinlove Farm http://www. fellinlovefarm.com/provides outdoor activities, socialization, and educational opportunities by hands-on animal interactions. All visits must be scheduled.

• Cheff Therapeutic Riding Center https://www. cheffcenter.org/ (Augusta)

• Hestovin Stables Therapeutic Riding Center (Grand Rapids)

Dance:

• Integrity School of Dance Arts Special Needs classes offered for students ages 9-18yrs. Focus on creative movement, turning, rhythm and balance https://www. integritydance.com/ (Byron Center)

• Arts in motion studio providing our community and individuals with disabilities an artistic adventure. https://artsinmotionstudio. org/ Classes are available in visual art, dance & movement, music, drama and more

• Grand Rapids Ballet Adaptive Dance program offers “Explorer Dance” for children with disabilities. Grand Rapids Ballet School | Adaptive Dance Program | Grand Rapids, MI (grballet.com)

RESPITE/CAMPS/CHILDCARE: Childcare: Care.com & greatstarttoquality.org have search options for special needs childcare.

Ikuslife.org and Indian Trails Camp: Over-night and drop-in respites that afford families and caregivers much-needed rest while participants are introduced to the camping experience on an accessible level. Indian Trails Camp - IKUS Life Enrichment Services

Little Mary’s Hospitality House http://www.littlemarys.org/ Nestled in the rural town of Wellston, MI, Little Mary’s offers a free vacation for families facing life-threatening or terminal illness. Families who have lost a child through illness and terminal adults are also welcome.

The Lucas Project: Supporting caregivers by providing recognition,

respite & resources. We believe supporting the caregiver is the best way to support individuals with special needs. https://thelucasproject.org/

Fresh Air Camp: https://freshaircamp. org/ A six-day, overnight camp for children who have tracheostomies or respiratory technology needs. Held every June near Cleveland, Ohio. There is no cost for the child to attend.

Center for Courageous Kids: Is a yearround medical camp in Scottsville, Kentucky that serves children and their families suffering from chronic medical conditions or life-threatening illness. Week-long summer camps for children and Family Retreat Weekends are designed to provide respite, recreation and support programs for families who have a child with a chronic or life-threatening illness. The Center for Courageous Kids will never charge a camper or family to attend and functions solely by donations. https:// www.courageouskids.org/

A Mother’s Rest: https://www. amothersrest.org/findaretreat

A Mother’s Rest specializes in coordinating therapeutic respite retreats for parents of children with extra needs. Supporting bio & adoptive moms, dads, and other family caregivers of children and adults with extra needs.

RESOURCES FOR TRANSITIONING TO ADULT SERVICES:

1. Parents should explore the option oflegal guardianship or the many alternatives to guardianship if your child’s special needs interfere with the ability to make financial and medical decisions. Every situation is unique. You do not have to have an attorney to pursue guardianship. Contact the Probate Court in your county of residence.

2. Check eligibility and apply forSSI (Supplemental Security Income) from the Social Security Administration. In Michigan individuals who qualify for SSI also receive Medicaid insurance.

3. Medicaid insurance covers Adult Home Help and Community

Mental Health Services if your adult child is eligible. Adult Home Help is payment for help with daily care. CMH (Community Mental Health) can provide community support such as respite and community living supports.

4. Parents may consider aspecial needs trust or MIAble account if you have assets. This can protect the assets you leave for your child so that your child does not lose their SSI and Medicaid. Those that offer legal assistance may offer additional information on a special needs trust and MIAble account on their websites.

Disability Advocates of Kent County

The mission of Disability Advocates of Kent County is to work alongside people with disabilities as they seek to lead self-directed lives, and to advocate for accessible and welcoming communities. https://www.dakc.us/

The Oasis Community http://oasiscommunity.info/ Assists families in creating sustainable housing alternatives, social connections and fulfilling life experiences

The Arc: The Arc can assist in advocating for individuals with intellectual & devlopmental disabilities to ensure that they are receiving appropriate services in

education, healthcare, housing, employment, case management, recreation, and other areas of life. If you need help with…

• Social Security -- We can assist you in applying for social security benefits, or if you are already receiving benefits, we can act as your representative payee.

• Medicaid -- We can also assist you in applying for Medicaid and offer information on other programs and services through the Michigan Department of Human Services.

• Mental Health Services -- We can assist in applying for services through your Community Mental Health (CMH) Agency. CMH can provide community support such as respite and community living supports (CLS).

• Work Incentives Planning and Assistance (WIPA) -- If you are receiving social security benefits and wondering about the impact of work on your benefits, we can help you understand and manage your benefits.

• Self-Determination & hiring my own Staff -- We can help you understand how self-determination works, and the process to hire your own staff.

ASK Social Group-Puzzle Partners: Step into a world of camaraderie and support with Puzzle Partners, an exclusive group for individuals

with Level I autism and social challenges aged 18 and above. https://www.autismsupportof kentcounty.org/socialgroups

Free stuff for Adults with Disabilities http://www.meriahnichols.com/freestuff-for-adults-with-disabilities/

Ability Weavers Lowell, MI: At Ability Weavers we provide an integrated work setting in which those with and without special needs work side by side. Together we create beautiful, high quality items for any home or office. www.abilityweavers.com

AYA of West Michigan: A program of Children’s Healing Center for young adults going through a similar lifethreatening diagnosis. Activities include game nights, grill outs and life coaching in a fun and casual environment. Geared for young adults ages 18-26

R.E.C. Connect: The R.E.C. Connect program provides opportunities in recreational and social experiences to enhance participants’ health and well-being. This is a year-round program offered by IKUS Life Enrichment Services in partnership with Community Mental Health of Ottawa County. Geared towards adults 18 years of age and older.

https://ikuslife.org/rec-connect/

Beyond26: Supports adults with disabilities in finding employment in West Michigan through individualized advocacy and networking. We do this by reaching out to local businesses, finding volunteer opportunities, and growing our community. https://www.beyond26.org/

Disability Network Michigan (DNM): As a network, we serve as advocates for inclusion and accessibility throughout Michigan. For us, advocacy is about removing barriers; whether those barriers stand in the way of progress, physically deny access or in the way of thinking about persons with disabilities. We are dedicated to helping persons with disabilities achieve full participation in their community and life and remain self-sufficient.

Out and About in the Community with Services To Enhance Potential

BY GRETCHEN STILL

GETTING OUT AND ABOUT in the community is always a favorite for our Members at Services To Enhance Potential (STEP). From delivering meals to homebound seniors with Meals on Wheels in Westland, Redford and Downriver, to creating blankets for children in hospitals with Fleece & Thank You, to gardening at the Grosse Ile Community Gardens, to organizing the food pantry at Lighthouse Mission in Westland, our Members at STEP love to give back to the community.

When our Members are not out in the community volunteering, they have the option to join weekly outing groups that visit local parks, libraries, athletic centers, museums, bowling alleys, and movie theatres. In FY2022-2023, we had over 590 members participate in over 5,700 hours of community engagement and this number is expected to grow in 2024!

Engaging in our local community is an important aspect of job readiness and building independence. Aside from the inter-personal skills learned, building comfort in the community is critical for successful job placement. The tasks performed in each of these places can vary, but it is always with the goal of creating a personal connection between people and the communities that they live and work in.

Services To Enhance Potential (STEP) is a nonprofit organization which provides support and services to nearly 1,400 persons with disabilities and other mental health needs in Macomb, Washtenaw, and Wayne Counties. A major goal of Services To Enhance Potential is to increase the number of persons who are employed, self-employed, and volunteer in their communities. STEP provides and supports a variety of employment and self-employment options. We were founded in 1972 to bring an employment focus to individuals with a disability and have developed a strong reputation in the community for doing so.

For more information about the programs that STEP offers, please visit www.stepcentral.org.

STEP members at Fleece and Thank You

STEP members visit Toledo Zoo

STEP members delivering Meals on Wheels

Meet the Young Family

BY MELANIE YOUNG: WRITER AND CONTRIBUTOR

My oldest son was two when we moved to be closer to my husband’s job. We built our new home in a neighborhood full of kids and we were so excited for our son to make his first friends.

We met our neighbors and their kids quickly started coming to our home to play in the sandbox and in our yard. Most of the kids were around my son’s age and we quickly learned he did not quite fit in with the crowd. When he tried talking to the kids, they didn’t understand him and for a brief time, they tolerated him, but then just started to ignore him or played around him but not with him.

We had noticed that he did not have as many words as he should have at his age, and most of the ones he did have were not fully understandable except by my husband and I. After noticing the distinct differences in speech between our son and his peers, we reached out to his pediatrician and then to our local ISD (intermediate school district) to have our son evaluated for early intervention services.

Soon after we were visited by the Early On team at our home. They did a couple of evaluations, including a hearing screening. We were told he qualified for services from them until he aged out and then he could get speech services from our local school district. The Early On team visited us once a week and did interactive play therapy with him. He

affectionately referred to them as “his ladies”. When he turned four he was evaluated and began speech therapy with our local school district for Articulation Disorder.

Near the end of the school year, which was also the end of his therapy until September, his therapist was frustrated with his lack of progress. She literally threw her hands up in front of him and me and said “I can’t help him anymore. I think he has Apraxia.” No explanation, no resources. Nothing. We left and I felt defeated, like I had failed my son. That evening I dove into research about apraxia of speech. Unfortunately, there was not much info available. I was lucky enough to find that one of the best clinics in Michigan was within driving distance for us, so I made a call and got an appointment at the Kaufman Children’s Center located about 45 minutes away from our home.

Clinic founder and world renowned Apraxia treatment pioneer Nancy Kaufman did his evaluation herself and provided us with a DVD of the session. She explained that he did have Childhood Apraxia of Speech, a neurological speech disorder that makes it hard for the brain and mouth to coordinate sounds. She prescribed intensive therapy twice a week in her clinic over the summer as well as work to do at home. She said that he did not progress with the previous therapist because the therapy done for articulation disorder is different that the therapy for Apraxia.

He attended speech therapy at Kaufman over the summer and made great progress so that he only needed to have therapy through our new school district during the school year. We changed schools after the incident with the previous therapist as she would have been his therapist in kindergarten at his school.

Meanwhile, our youngest son Ryan was nearly three years old and his speech sounded a lot like his brother’s so we took him to Kaufman to have him evaluated. We also took him to our ISD and found that his speech disorder was worse than his older brother’s. Ryan had virtually no correct sounds at the beginning or end of most words. Only my husband and I could really understand him when he spoke.

During his speech evaluation, Nancy Kaufman noticed some other issues so she suggested we have an Occupational Therapy evaluation. It turned out he also had Sensory Processing Disorder. So much made sense about his behaviors! He had no fear and no sense of danger. He would jump off of things –including our outdoor playset without pause. He would run into things. He could not run more than a few feet without falling. He also hated large groups of people, hated bright lights and noisy stores. He was prescribed both Speech and Occupational Therapy

We drove the 45 minutes one way to Kaufman for both speech and Occupational therapy twice a week for over a year and a half. It was hard. Some weeks I could tell he was improving. Other weeks he would take a step backward. We had to learn about sensory diets and

what the right one was for Ryan. We had to learn about the other senses, including the Vestibular sense and the Proprioceptive sense and how to make sure Ryan had enough input of both of those in his daily routine Otherwise he became overwhelmed.

It was a hard couple of years, between therapies at the center, school based therapies, and practice at home. During this time, my husband was the sole bread winner, as there would have been no way for me to work and coordinate and transport both boys to school and therapies. Between both boys, they had 17 years of speech therapy. Both were able to graduate from speech therapy after elementary school and did not need to have IEPs past elementary school.

There are some learning issues that can co-occur with Apraxia. One is Auditory Processing Disorder. Ryan continues to have difficulties processing things that teachers say at times and has trouble processing dates in sequences, as well as processing lots of information, such as multiple step math problems. He has a 504 planthat allows for accommodations to assist with these issues

While it seems overwhelming, it was not all work and struggles. There were some wonderful moments. Like when my oldest spoke in front of 100 people for his Middle School National Honor Society induction. Or when Ryan spoke in front of over 300 people at his elementary school’s Grandparent’s Day celebration.

Both boys have had successful school careers. Both have been part of the National Honor Society. My oldest is a member of his University’s Engineering Honor Society and has been on the Dean’s list every semester in college. Ryan was also the keynote speaker at the 2023 Detroit Walk for Apraxia and spoke about his experience with Apraxia

Both have been involved in baseball basically their entire lives and have achieved great success at the sport. However, I am most proud of the hard work they had to do to be able to speak and communicate like “typical” kids. While most kids were in preschool learning how to make friends, mine were in speech therapy. That has made it difficult at times for each of them to make and maintain friendships. They both have a few close friends and that is really all one needs in life.

I am in awe of their strength and fortitude. I am so proud of the young men that they have become after all they have had to overcome.

My advice to parents who suspect their child may have a disability or learning issue is to seek help as soon as possible. Early intervention worked wonders for my boys and I truly do not know where they would be today without it. Once they received the appropriate therapies from the wonderful teams at Kaufman and at our school district, they both made great progress. As Ryan said in his speech, “It may be hard now, but don’t give up.”

RYAN’S STORY: LIVING WITH APRAXIA

BY RYAN YOUNG

My name is Ryan Young, and I have apraxia. I have had this all my life and whatever I have done my whole life, I have not let it stop me. I will be honest, it was a very hard part of my life for many years. It made it so almost no one could understand anything I said. Pretty much the only people who could understand me were my parents. But as I got older I worked hard to improve my speech. By the time I was in elementary school many people were able to understand me, but I was still nervous to talk because I was worried that I would get made fun of for my speech issues.

Instead of letting that bother me my whole life, my parents found me a speech private teacher. She helped me a lot, she improved my speech and improved my nervousness. Overall, I had speech therapy for nearly 8 years.

Apraxia is still a huge part of my life. I am 17 years old now and still have trouble pronouncing some words. So even if it does not seem to be getting better it will, it may take many years for it to, but you just need to keep at it and it will get better. Not too long ago I spoke at the Detroit Walk for Apraxia and it was a cool way to get my experience out there in front of parents of kids who have Apraxia.

Ryan Young

MEANINGFUL IEP GOALS A Guide for Parents

BY MARIA GIANCOTTI, M.ED - STUDENT ADVOCACY MICHIGAN

As a special education advocate, I’ve had the privilege of walking alongside parents as they navigate the complex landscape of IEPs and 504 plans for their children with disabilities. Every journey is unique, filled with challenges, victories, and, most importantly, a relentless pursuit of ensuring that each child receives the quality education they deserve.

One case stands out vividly in my mind. I remember sitting across from a mother, let’s call her Sarah, whose frustration was palpable as she recounted her son’s struggles in school. Despite numerous meetings with teachers and administrators, she felt like her concerns were falling on deaf ears. It wasn’t until we delved into the intricacies of crafting meaningful IEP goals that Sarah began to see a glimmer of hope for her son’s future.

The foundation of any successful IEP lies in its goals. Goals serve as the roadmap for a child’s educational journey, outlining specific objectives tailored to their unique needs and abilities. IDEA mandates that IEP goals be “measurable annual goals, including academic and functional goals” designed to meet the child’s needs resulting from their disability. To ensure that goals are both effective and actionable, many educators and advocates adhere to the SMART criteria:

Specific: Goals should clearly define what is to be achieved, leaving no room for ambiguity. Instead of vague statements like “improve reading skills,” a specific goal might be “increase reading fluency by 20 words per minute over the course of the school year.”

Measurable: Progress towards the goal should be quantifiable, allowing for objective assessment and tracking. This might involve using standardized assessments, observational data, or other measurable benchmarks to gauge the child’s advancement.

Attainable: Goals should be realistic and attainable within the designated timeframe. While it’s important to challenge students, setting unattainable goals can lead to frustration and disengagement. Collaborating with teachers and specialists can help determine what is feasible for the child.

Relevant: Goals should directly address the areas of need identified in the child’s evaluations and assessments. They should align with the child’s strengths, weaknesses, and long-term educational objectives, fostering meaningful progress towards academic and functional independence.

Time-bound: Goals should have a clear timeline for completion, typically within the duration of the IEP cycle (usually one year). Establishing deadlines helps maintain focus and accountability, ensuring that progress is made consistently throughout the school year.

Returning to Sarah’s story, we worked together to develop SMART goals that reflected her son’s individual needs. By breaking down broad objectives into specific, measurable targets, we were able to create a roadmap that not only addressed his academic challenges but also fostered his personal growth and self-confidence.

For example, one of his goals focused on improving his social skills, an area of concern for both Sarah and his teachers. We wrote a specific objective: “John will initiate and maintain conversations with peers during structured activities, such as lunch and recess, at least three times per week. Progress will be measured using teacher observations and peer feedback, with the goal of increasing social interactions by 50% by the end of the school year.”

By following the SMART framework, we were able to transform abstract ideas into clear action steps, empowering both Sarah and her son to advocate for his educational needs with confidence and clarity. Armed with a well-crafted IEP that prioritized meaningful goals, John began to thrive in ways that once seemed out of reach.

As advocates, it’s crucial that we equip parents with the knowledge and tools they need to navigate the IEP process effectively. By emphasizing the importance of SMART goals and providing guidance every step of the way, we can ensure that every child has the opportunity to reach their full potential, regardless of their abilities or challenges.

Developing meaningful IEP goals is not just about meeting legal requirements; it’s about empowering children with disabilities to succeed in school and beyond. By embracing the principles of specificity, measurability, achievability, relevance, and timeliness, we can pave the way for a brighter future for all students. If you need support with your child’s IEP goals, contact us at 248-372-9770.

LOCAL EVENTS

BY CHRISTIA WOODFORD — PUBLISHING ASSISTANT AND LOCAL EVENTS

Visit a Museum through Museums for All

Due to COVID-19, many museums participating in Museums for All have adjusted their hours and ticket purchasing policies. Before visiting a museum, please call or check their website to see if they are open or require advance registrations. Many museums are offering virtual resources—check your local museum’s website for more information.

Through Museums for All, those receiving food assistance (SNAP benefits) can gain free or reduced admission to more than 1,000 museums throughout the United States simply by presenting their EBT card and a photo ID. Check here for participating museums. https://museums4all.org/

Museums

Abrams Planetarium

Sensory Friendly Shows

The Sun Our Living Star

May 19,11:30 a.m.

755 Science Road, East Lansing, MI, United States

The Sun has shone on our world for four and a half billion years. The light that warms our skin today has been felt by every person who has ever lived. It is our nearest star and our planet’s powerhouse, the source of the energy that drives our winds, our weather and all life. The passage of the Sun’s fiery disc across the sky - day by day, month by month - was the only way

to keep track of time for countless past civilizations. Discover the secrets of our star in this planetarium show and experience never-before-seen images of the Sun’s violent surface in immersive full dome format.

Zula Patrol Under the Weather

May 19, 1:00 pm

The stalwart heroes of The Zula Patrol are on an expedition collecting samples of weather for scientist Multo’s research. When the Zula gang inadvertently hurts their loyal pet Gorga’s feelings, he decides to leave Zula and find another planet to live on.

Villain Dark Truder then tricks Gorga into helping with his latest nefarious scheme to rule the universe. The Zula Patrollers find out and go after him-in the process learning all about weather, both terrestrial and interplanetary. Based on the hit TV series.

These shows will run with the lights up, the sound down, and the theater doors open so people can move about as needed. We also provide a place to “chill out” in our lobby. All shows include a live star talk about what is up in the sky that night. We will include a short break between the main show and the star talk. Information about what to expect during the show will be provided when you purchase tickets. Cost: Adults, $5.50, Students and senior citizens, $5.00, Children (age 12 and under), $4.50

Friends of Abrams Planetarium Members, Free Free with Museums For All (with valid EBT, Medicaid, or WIC card and photo ID) https://www.abramsplanetarium. org/Programs/Sensory.html

Impression 5

May 15, 5:30 pm - 7:30 pm

Impression 5 Science Center, 200 Museum Dr., Lansing, MI 48933

Explore your Science Center with select exhibits altered to reduce sounds, scents, and lighting stimuli. Guests can expect a limited building capacity, pop-up activity, and map designating the sensory experiences in each exhibit. Thank you to MiABLE for supporting Sensory Friendly. Admission: Regular admission prices apply. Free for members. https://autismallianceofmichigan. org/event/sensory-friendlyhours/2024-03-20/

Ella Sharp Museum

Sensory Time

Every Saturday at 9:00 am 3225 4th Street, Jackson, Michigan 49203

During Sensory Friendly Hours, the Ella Sharp Museum will open its galleries at 9 a.m., an hour before the museum opens to the public. Families with members who are neurodiverse, autistic, or have other sensory processing disorders or cognitive

disabilities are welcome to visit the museum for a quieter experience in a more controlled environment. Designated quiet zones will allow visitors to decompress and experience the museum at their own pace.

Before each program, families are invited to browse our “pre-visit” materials to help them prepare for their visit including social narratives and maps of our facility. These previsit materials are also available to help families plan for visits that take place outside of program hours and a sensory backpack is available at the front desk for use.

To provide the most sensory-friendly environment possible, we will limit the capacity for these special times to 50 people. https://ellasharpmuseum.org/ classes-and-events/sensory-time/

Grand Rapids Children’s Museum

Various Events Scheduled May.1- May. 31

Grand Rapids Children’s Museum, 11 Sheldon Ave NE, Grand Rapids, MI 49503

Check calendar for Sensory Friendly evenings https://www.grpm.org/visit/ https://www. autismsupportofkentcounty.org/ new-products/p/2024-night-atthe-gr-childrens-museum

Sports

Buddy Soccer League

Tuesdays April 16, 2024 through May 21 from 5:30p-6:30p Sashabaw Plains Park, 5620 Maybee Rd, Clarkston, MI 48348

6 week soccer league for boys and girls ages 7-14 with cognitive disabilities with or without physical impairments. Each player will be paired with a buddy, ages 10-17, to assist as needed. Minimum of 10 players/ buddies. Hosted by www.itpr.org

TheraplayYoga: Therapeutic Playful Yoga for Diverse Abilities

Adaptive Yoga Studio, 2015 E. Michigan Ave. Lansing, MI 48912

Inclusive & Accessible Yoga for Diverse Bodies, Brains, and Abilities. Check website for schedule. Gloria@TheraPLAYoga. com https://theraplayoga.com/

Detroit City FC

May 4, 29

Keyworth Stadium, 3201 Roosevelt St, Hamtramck, MI 48212 https://www.detcityfc.com/

Detroit Tigers

May 1, 10, 11, 12, 14, 15, 23, 24, 25, 26, 28, 29, 30 Comerica Park, 2100 Woodward Ave, Detroit, MI 48201

https://www.mlb.com/tigers

Family Fun

Detroit Zoo

Sensory Friendly Evenings

Check the website for the day! As part of our work to create accessible and welcoming spaces for all, the Detroit Zoo will turn down the music and adjust the lights during special evenings this summer.

Starting in June, the Detroit Zoo is hosting three Sensory Friendly Evenings for guests with different sensory needs. Sensory Friendly Evenings will take place from 3 to 7 p.m. on Aug. 30. During these times, the Zoo and its attractions will be open to all visitors, but special accommodations will be in place to ensure the Zoo can be enjoyed by families and individuals of all abilities. Sensory bags and a dedicated sensory room is available for those who may need a quieter and more secure space.

Included with Zoo admission | Free for members | No event registration required https://detroitzoo.org/events/zooevents/sensory-friendly-evenings/

Legoland Discovery Center Michigan

Sensory Friendly Mornings Check the website for upcoming Mornings

4240 Baldwin Rd, Auburn Hills, MI 48326

During Sensory Friendly Mornings, we’ll reduce the lighting, turn off music & disable distracting stimuli for an hour before we open to the general public. This event is perfect for our friends on the autism spectrum. Sensory-sensitive adults are welcome to visit during Sensory Friendly Mornings without a child (age 16 or under) in the party until the attraction opens to the general public at 10 am. Adults who are not accompanied by a child

must exit the attraction upon opening. Groups that are accompanied by a child are welcome to stay past 10 am. Tickets are limited and must be purchased online in advance for this special event.

https://www.legolanddiscoverycenter. com/michigan/tickets-passes/

Sealife Michigan

Sensory Friendly Mornings Check the website for upcoming mornings 4316 Baldwin Road, Auburn Hills, MI 48326

During Sensory Friendly Mornings, we’ll reduce the lighting, turn off music & disable distracting stimuli for an hour before we open to the general public. This event is perfect for our friends on the autism spectrum.

The aquarium will open to the general public with normal lighting, sound, etc. at 10 am, but you’re welcome to stay as long as you like and do not have to leave when the event ends at 10 am.

Tickets are limited and must be purchased online in advance for this special event. Please check https://www.visitsealife.com/ michigan/what-s-inside/events/ sensory-friendly-mornings/

Together Let’s Sing, Dance and Jam!!

May 1, 6:30 pm- 7:30 pm Virtual

Please join us for our monthly “virtual” music therapy event!! Please RSVP by February 25 to Cathy Blatnik at blatsie63@yahoo. com with your name, age, contact phone number and e-mail address

Spring Dance Party

May 2, 6:00 pm- 8:30 pm Roll Arena 2909 Bay City Road, Midland, MI

A community event for all 18 and older! There will be music, dancing, and cookies and drinks are included. Games will also be available to play. Admission is $7 per person https://autismallianceofmichigan. org/event/spring-dance-party/

Swift-Tea

May 4, 11:30 am- 2:30 pm Troy Community Center, 3179 Livernois Rd, Troy, MI 48083

Calling all Taylor Swift Lovers: No need to stay out ‘til Midnight to enjoy this Fearless Swiftie Event! Dress up in “Style” in your favorite Taylor era. Our DJ will supply music from all ten albums, so come ready to dance and sing along. You’ll have the chance to visit our friendship bracelet making stations, but feel free to wear your own to trade too. Brunch menu including scrambled eggs, hash browns, bagels, coffee and tea, and dessert of Red Velvet cupcakes provided. We have just one question, are you “…Ready For It?” Register by 5/1. Only one person needs to register, then you will be prompted to list the additional person(s) in your party. Ages 12 and under must be accompanied by an adult age 18+ FEE: $25 per pair, $10 per additional person https://rec.troymi. gov/programs___events/recevents.php

Fascination Factory

May 7, 2:30 pm- 5:30 pm 2295 E Lincoln St; Suite 150, Birmingham, MI

What to expect in our new sensory sensitive hours: Back door locked for safety No music Noise Cancelling Headphones Oral chews offered at check-in Calming corner tent Minimized Capacity Families $30.00 https:// autismallianceofmichigan.org/event/ sensory-sensitive/2024-05-07/

REC-IT Class: Inclusive Art

May 9 and 23, 1:00 pm-2:00 pm Disability Network Eastern Michigan - Troy 1709 John R Road, Troy, MI

Join us for in-person art classes. Participants will learn new artistic skills using a variety of mediums, such as: acrylic painting, oil pastels, watercolor, and mixed media. Class includes group and individual instruction and meets on the 2nd and 4th Thursday of each month. In order to promote inclusion for all, we request a maximum of 4 individuals from any one agency. All levels of experience and ability are welcome. https:// autismallianceofmichigan.org/event/recit-class-inclusive-art-2/2024-04-11/

iCanBike Bike Camp May 13, 8:00 am - May 17, 5:00 pm Roll Arena 2909 Bay City Road, Midland, MI, 48642

The Arc of Midland is so excited to announce another year of iCanBike Bike Camp!

Our most anticipated camp of the year! iCanBike Bike Camp is designed to teach people with disabilities how to ride a bike where traditional training wheels have failed. Riders will be encouraged every step of the way by supportive staff! iCanBike – Midland lasts for 5 days with sessions lasting for 1 hour and 15 minutes each day. You can choose which session time works best for you / your child! More information can be found in the flyers attached below, along with a video walkthrough of what a day at camp looks like. Register soon, as space is limited! We need both riders and volunteers!

Rider Online Registration Form: https:// forms.gle/dBUx8NqUCtTYoq2h8

Volunteer Online Registration Form: https://forms.gle/4cGYT8yrux2BugaW9 Call The Arc of Midland at (989) 6314439 with any additional questions.

ARC Livingston Dance 2024

May 18, 6:00 pm- 8:00 pm

Howell Elks Lodge 2830 E Grand River Ave, Howell, MI

The Arc Livingston Dances Schedule for 2024 is Here!! Mark your Calendars!! Arc Dances are held monthly at different locations throughout the community. There is a charge of $3 https://autismallianceofmichigan. org/event/arc-livingstondance-2024/2024-04-27/

Inclusive Game Night

May 31, 6:00 pm to 7:30pm

Therapeutic Concepts, LLC 38257 Mound Road, Building

D, Sterling Heights, MI

For the whole family focusing on inclusion, safety, and enjoyment! $10 per family, register online https:// therapeuticconceptsllc.com

MJR Digital Cinema

Sensory-Friendly Film

Check the website for movie times 100 East Maple Road, Troy, MI, 48083, United States

https://www.mjrtheatres.com/sensoryfriendly-films?fbclid=IwAR1JnETT4LqVME0tv0TkWPiYH5lckEcSi4ou3EcdA4eyfbqJYLgmReJ00

Events

Come Join Girl Scout Troop 1197! First All Inclusive Troop! 4920 Groveland Rd, Ortonville, MI 48462

The ONLY troop of its kind in MI, troop 1197 is being formed right now at O.A.T.S. (Offering Alternative Therapy with Smiles) in Ortonville for those with special needs ages 11 and up. The troop, designed with experienced scout leaders, will include typical scouting activities including camping and outdoor skills. For more information, email walkonoats@gmail.com

7th Annual Hats and Horses

Hosted by Pioneer Resources

May 6, 5:00 pm- 9:00 pm Bella Maria’s Event Center,513 W Pontaluna Rd, Norton Shores, MI 49444

Hats and Horses is our most anticipated fundraising event. Themed around the Kentucky Derby, this “party with a purpose” raises funds for our agency or sometimes, a specific area or program. This event takes place every year on the first Saturday in May, Derby day!

Dress in your derby best and enjoy a live auction, silent auction, our famous “Wheelbarrow of Booze” raffle, and many other fun derby-themed activities. The race is shown live and the music, food and atmosphere is fantastic. You won’t want to miss it!

For Tickets: https://betterunite.com/ pioneerresources-hatsandhorses2024

Walk for Autism

May 19, 9:00 am- 3:00 pm

Autism Support of Kent County160 68th Street Southwest, Grand Rapids, MI, 49548

Check for more information at https:// www.autismsupportofkentcounty.org/ events/2024/5/19/walk-for-autism

Sibshops 2024

May 20, 6:30 pm- 5:30 pm - 7:30 pm 2/42 Community Center, 7526 Grand River Avenue, Brighton, MI 48114

What are Sibshops? Sibshops provide support and guidance to siblings (ages 8-12) of children with special medical or developmental needs. Siblings are encouraged to share the challenges and celebrate the joy with brothers and sisters in similar situations. Each

session will meet in person for roughly two hours. We will play games, talk about life with a sibling with disabilities, and play a few more games! A light dinner is provided. Fee: $10 per session (covers activity supplies and dinner) Special note: If your child would not be able to attend due to the fee, please contact our office at 517.546.1228 for financial assistance. Register at: https:// autismallianceofmichigan.org/event/ sibshops-2024/2024-03-18/ Apr. 18th session https:// autismallianceofmichigan.org/event/ sibshops-washtenaw/2024-04-18/

Prom Night for Autism

24 - The Silent Party

May 31, 7:00 pm- 10:00 pm

100 Lenox St, Detroit, MI 48215

A silent prom where you control the volume! Dinner, décor, sensory activities, and more! Au-Some City 313 is having it’s 4th annual free prom night for autism in Detroit! Come out and have a great time! Prom King and Queen will be selected! Who will it be for 2024? Sensory Sounds provided by Win with Windless. For tickets: https://www.ausomecity313. org/event-info/prom-night-forautism-24-the-silent-party

IEP: A Closer Look

May 31, 9:30 am - 11:30 am Register at https:// autismallianceofmichigan.org/event/ iep-a-closer-look-11/2024-04-29/

This free, online workshop takes a closer look at the Individualized Education Program (IEP) process. This workshop will help you:

• take a more in depth look at the core areas of the IEP

• prioritize your greatest concerns

• learn how to address those concerns through the IEP process

• improve your ability to have productive conversations

There will also be time set aside to ask questions. Who should attend? Families with a child or young adult with an IEP or IFSP. Questions? info@ michiganallianceforfamilies.org

Is there a local event for the special needs community you would like us to promote in an upcoming issue?

Childhood Apraxia of Speech

BY MELANIE YOUNG: WRITER AND CONTRIBUTOR

Childhood Apraxia of Speech (CAS) is a neurological disorder that affects how the brain and the mouth work together to produce speech. In those with CAS, the brain cannot properly plan and sequence the sound movements to say what it plans to say.

CAS is said to be present from birth and is not the same as a developmental delay in speech where the speech sounds come later than normal. It is not caused by weakness in the jaw. It is said to occur in families and may have a genetic component. More research is needed to determine the exact cause.

Children with CAS have many of the same characteristics in speech. People with apraxia may appear to be groping for the right word or sound. They may leave off the beginning or ending consonants of words, or may leave out certain vowels. They may be able to say a difficult word one time, but not be able to repeat it. They may also have trouble with intonation and proper rhythm of speech.

There are also co-occurring conditions that may be present for those with apraxia, such as expressive language and motor planning disorders.

Treatment for CAS is focused on the sequencing of movements of the speech muscles during speech attempts. According to Stacie Griffith MS, CCC-SLP, therapy is most effective when it’s provided by

someone who specializes in CAS and when provided at a high frequency. “Progress is typically much slower than a developmental speech delay and typically lasts many years. It’s a lifelong disorder and usually occurs with other co-morbidities making a multi-disciplinary team approach most helpful.”

Griffith is not only a Speech Pathologist who treats patients with apraxia, her young son Silas has CAS. “Being both a medical SLP and focused on treating the adult population and a mom to Silas with CAS brings about a unique scenario. The apraxia community has brought so much support to my son and me. The life lessons I have learned

with my son have also helped me to treat my patients who often have experienced similar challenges.”

Griffith is also an advocate for all children with CAS as one of the Co-Coordinators of the Detroit Walk for Apraxia. Last year’s Detroit event was the second highest earning walk in the country for the non-profit organization Apraxia Kids. This year’s event is scheduled for September 22nd at Young Patriot’s Park in Riverview. More information can be found at https://www.apraxia-kids.org/walkfor-apraxia. Teams can register now!

Griffith is also advocating for the diagnosis of Apraxia to be added to the Children’s Special Care Health Services eligibility list. This is a program within the MDHS and helps people with chronic health issues by providing services referral services, coordinated services and family centered services. There is currently a petition on change. org, titled Speak up For Speech Apraxia! Childhood Apraxia of Speech to be included on CSHCS. She encourages everyone to sign it to support those with apraxia. “I absolutely love advocating for these kids,” said Griffith. “They work so hard and are so resilient.”

Stacie Griffith and her son Silas