Editorial Gold

Monterey Bay Parent

Design Gold
 Read The Current Issue
MenuClose
Monterey Bay Parent » children with disabilities

Monterey County School Boards Association Honors Special Kids Connect with “Excellence in Education” Award

By |

The Monterey County School Boards Association (MCSBA) will honor Special Kids Connect, an organization that serves families with loved ones that have disabilities, with the “Excellence in Education” award at its annual dinner and organizational meeting on Friday, April 12 at Hartnell Community College in Salinas.

Special Kids Connect was selected from a list of 35 nominees, established by Monterey County School Districts, to be honored with the “2024 Excellence in Education” award for having a transformative and significant impact on the lives of children and youth in our community. “The MCSBA was so impressed with the mission of Special Kids Connect, to connect parents who have children with developmental disabilities with community resources and empower them to become effective self-advocates for their children’s needs,” said County Superintendent of Schools Dr. Deneen Guss.  “Our school leaders are very thankful for the wide range of programs and services that Special Kids Connect provides to meet the ever-changing needs of Monterey County’s special needs community,” said Dr. Guss. 

Founded in 2007 by parents of children with developmental disabilities, Special Kids Connect raises awareness and provides support to children and their families by offering parent workshops, resource fairs, educational conferences, recreational programs and a variety of other opportunities to help parents navigate the often complex landscape of services available for children with developmental disabilities. 

School governance team members from throughout Monterey County will attend the dinner event, with Special Kids Connect Executive Director Lori Luzader accepting the award. “We are thrilled to receive this recognition from the Monterey County School Boards Association. This award is a testament to the hard work and passion of our team, the resilience of the families we serve, and the amazing children we have the privilege of supporting,” said Luzader. “Through this recognition, we hope to shine a light on the importance of full and meaningful inclusion. Our vision is to see that every child, regardless of his or her abilities, is not only fully included but is warmly welcomed into their communities and that they, and their families, are made to feel that they truly belong.”

“We are extremely grateful for the collaborative efforts of Special Kids Connect, helping to ensure that parents with special needs children are well-informed and empowered to effectively access and leverage available resources, and are warmly embraced into our community,” said MCSBA President David Gaboni. “We are proud to recognize them with this year’s Excellence in Education award.”

To learn more about Special Kids Connect

To read our article about Special Kids Connect

Therapy and Support Resources for Children With Special Needs in Monterey County

By |

Once a child receives a medical diagnosis of a disability, a new chapter of parenting and advocating begins: seeking out and starting therapy programs and supportive services. Parents often encounter unexpected roadblocks: Programs are full and not taking on new clients, available appointments do not align with your schedule, there are long wait times, they are out of network, and thus, out of pocket (and often very expensive). Sometimes your child’s disability does not qualify for services with your insurance coverage, even though the therapies would benefit them.

These barriers are very difficult emotionally, financially, physically, and mentally. It’s taxing and frustrating to get your hopes up and find services that can benefit your child, just to hit a roadblock or realize it isn’t feasible in your schedule or finances. Give yourself grace without guilt and realize these answers and services may not be immediate. A mother with two young children with autism spectrum disorder describes her years-long journey of obtaining a diagnosis and parenting as “harder than I ever anticipated and expected.”

Tips on finding resources for therapies and supportive services:

DISTRICT EVALUATIONS THROUGH YOUR SCHOOL DISTRICT

The US Department of Education is responsible for enforcing the Individuals with Disabilities Education Act (IDEA) and protects the rights of every child to receive a free appropriate public education (FAPE). “The IDEA governs how states and public agencies provide early intervention, special education, and related services to more than 7.5 million (as of school year 2020–21) eligible infants, toddlers, children, and youth with disabilities. Infants and toddlers, from birth through age 2, with disabilities and their families receive early intervention services under IDEA Part C. Children and youth ages 3 through 21 receive special education and related services under IDEA Part B,” the US Department of Education explains.

Your child is entitled to an assessment for services, so reach out to your school district to book an appointment. This is the first step to see if a child should receive related services such as speech therapy, occupational therapy, accommodations 504s, and IEPs.

SAN ANDREAS REGIONAL CENTER (SARC)

San Andreas Regional Center is a community-based, private nonprofit corporation funded by the State of California to serve people with developmental disabilities and their families who reside in Monterey, San Benito, Santa Cruz, and Santa Clara counties.

They provide a plethora of services, some of which include client/parent support/behavior intervention training, day care services, durable medical equipment, home health support, and out-of-house respite services. Eligible conditions include intellectual disabilities, cerebral palsy, epilepsy, autism, and a “fifth condition” (see website for more details). To apply for services, view a detailed list of services and descriptions, and schedule an intake interview, visit sanandreasregional.org.

Figuring out what services, supports, and therapies your child needs is a challenging roller coaster of emotions, often filled with obstacles outside of our control.

Take one step at a time, one appointment at a time, and recognize those are steps forward in a long journey ahead and never underestimate the hard work you are devoting to help and advocate for your child.

Your Child Receives a Disability Diagnosis: Now What?

By |

There is no way to be prepared for the mix of emotions that are felt when your child is given a medical diagnosis, especially one you are not familiar with and especially when the diagnosis is defined as a disability.

Permanence can feel overwhelming, and not understanding the disability itself (let alone treatments and therapies) can compound those feelings. Parenting is difficult enough, and unknown curveballs can make it harder.

My husband often reminds me that “Rule #1 is to know the rules.” While there are no defined rules, per se, my number one go-to when feeling overwhelmed with parenting is to first pause and take a deep breath.  Whatever your thoughts and feelings are when receiving a diagnosis for your child, they are valid and individual to you and your experience. Your child, partner, and other family members may have different reactions, and while that can make everything feel more complicated, know that complex emotions and feelings are part of the process. It is a process because once you receive a diagnosis, the next step is starting a new challenge and chapter: treatments, therapies, medications, educational plan, and life.

A natural reaction is to look online for answers, but the internet is a double-edged sword. While it’s filled with knowledge, it can lead people down a rabbit hole that can feel formidable and tiresome. When researching online, seek out credible sources, such as the Mayo Clinic and associations linked to the disability (examples include the Autism Society, the National Organization on Disability, and the Tourette Association of America).

Local organizations such as Special Kids Connect (SKC) are valuable resources for Monterey residents. This nonprofit “supports individuals with disabilities throughout their lives, their families, and our community by connecting families, sharing resources, and offering recreational programs for children and young adults that promote social skill development and inclusion in community settings.” In 2022, a competitive grant award from the California Department of Developmental Services and the California Department of Education designated Special Kids Connect as Monterey County’s first Family Empowerment Center, allowing them to provide a variety of educational support, community programs, a resource directory, workshops, events, and more.

Their Mom’s Nights Out social events provide support for parents to share experiences and provide references and referrals and a sense of camaraderie. Many national associations have support groups as well, such as monthly Zoom calls, conferences, children and family camps, webinars, and resources. They often have resources to share with schools and educators, which can be especially helpful in IEP meetings and trainings.

“Challenging” is a tame word to describe navigating the American medical system, and obtaining a medical diagnosis for a disability can be a lengthy and costly process. Give yourself permission to seek second opinions and/or different providers if you are not comfortable with a doctor, therapist, etc. Trust your gut and find supportive staff who will be thorough and informative to your child and family. It can be frustrating feeling like you are starting over but will be worth it in the end to have medical providers whom you feel comfortable with. Local families are also amazing resources for referring doctors, therapists, and other programs and services.

As every child is different, so is each diagnosis. Disabilities are complex and manifest differently in everyone. Lean on medical professionals and service providers you trust, and when researching on your own, seek out credible sources and lean on other families for knowledge, guidance, and support.

The 4-1-1 on Your Child’s 504 Plan

By |

What is a 504 Plan?

Section 504 of the Rehabilitation Act of 1973 is a federal civil rights law that protects qualified students from discrimination based on disability. If a learning, physical or neurological disability impacts a child’s ability and education, a 504 Plan can be a blueprint to create reasonable accommodations and support strategies for the student. 

One of the main distinguishers between a 504 Plan and an IEP (Individual Education Program) is that a 504 has a broader list of defined disabilities and fewer restrictions. The IEP provides specialized instruction that may include changes to the curriculum, while the 504 Plan allows accommodations to the curriculum.

Peter Wright of Wright’s Law stresses the importance of documentation regarding advocating and services for your child. “You write letters to clarify events and what you were told. When you train yourself to write things down, you are taking steps to protect your child’s interests. If you have a dispute with the school, your logs, and letters are independent evidence that supports your memory. Documents that support your position will help you resolve disputes early.”

Examples of accommodations, support, and services include specific directions and instructions for students, such as a visual schedule and frontloading transitions, seating placement, and occupational or physical therapy. These instructions can be ongoing throughout the school year or have a specific end date listed. Accommodations regarding the student’s academics and study skills could include shortened assignments and extra time allotted for test taking.

Behavioral interventions in a 504 could discuss strategies for the student to self-regulate and an individualized “sensory diet .”A “sensory diet” is a group of activities to assist with attention, arousal, and adaptive responses in the following areas: tactile, oral motor, visual, auditory, olfactory, vestibular, and proprioceptive. The student can be a “classroom helper” with these roles, helping the teacher carry materials and other assignments that fulfill their sensory need by aiding the teacher. Common examples include structured movement breaks, time on the swing set, wearing headphones, fidget spinners, and heavy lifting activities.  

What to Expect Before the 504 Meeting

  • Parents/Guardians may be given Parent Assessments, often by various team members, such as the district or school’s occupational therapist (OT) and psychologist.
  • Parents/Guardians will receive and should review in full a copy of the Notice of Parental/Guardian Rights and Procedural Safeguards under Section 504.  

Action Plan after the 504 Meeting

  • Discuss how often the 504 team will meet.
  • The best practice is to review a 504 Plan annually, but different districts will have their policies. It is important that any significant changes in placement or how the student is taught needs to be communicated to the parent.  
  • Parents/Guardians will be asked whether they agree to the 504 Plan and asked to sign. Parents have the right to decline if they disagree and to specify which part (the evaluation process, identification, service plan, or another section).
  • 504 Plans are discontinued three years after they are no longer used or after the child’s 25th birthday.

Local Help and Guidance

Special Kids Connect is a non-profit whose mission is to “develop resources, raise awareness, and provide support to children with disabilities and their families in Monterey County.” They offer one-on-one guidance for 504 assistance if parents have any questions or concerns about a child’s 504 Plans and IEPs.

Finally, remember that all 504 Plans are different. 504 Plans can vary based on the school, but all should include accommodations and services. Documenting all meetings, action plans, and duties allows the school administrators, educators, parents, and students to understand each other’s roles and responsibilities with one common goal: to help the child succeed.

Parents of Children With Disabilities: How and Where to Find Support Systems

By |

All parents experience individual and collective challenges, but often the most demanding tests parents of children with disabilities and neurodivergent children face is feeling alone. Not being able to relate to other parents whose children are thriving by society’s standards or achieving “typical” milestones can be difficult to hear and take an emotional toll. Connecting with other parents whose children have disabilities, even if it’s not the same diagnosis as their child, gives parents support, encouragement, empathy, and resources that lift their spirits and build communities and friendships.

Just as there are different phases in parenting, so are the reasons to seek out support. For example, when a parent receives a diagnosis prenatally, they often feel scared and unsure of the challenges their child may face in life. Years later, a parent may need support in understanding and advocating for their child’s IEP (Individual Education Program). “My husband and I were very scared when we found out our daughter had Down syndrome prenatally. We went online to find support groups to meet other families with Down syndrome children. We found Magic Babies and what I love about this group is you feel supported and comfortable asking questions.” Kori Young shared.

FOUR SUGGESTIONS FOR FINDING SUPPORT

1. National Non-Profits & Organizations: Virtual support groups are becoming commonplace in the digital era of ZOOM. Talking with other parents whose children have the same diagnosis can be very enlightening and educational and give insight and support in ways you may not be able to find locally.

These websites often have a plethora of helpful information, from a directory of providers specializing in your child’s disability to online events, seminars, and resource directories. Through the Tourette Association of America, I can attend virtual conferences and webinars for free. The website also has educational resources, ranging from “Educating Classmates About Tourette Syndrome (TS)” to videos about doctor visits, Individual Education Programs (IEP), therapies, medication, and many more topics. An archive library of educational presentations includes medical professionals speaking about medicines and drugs, clinical research, and psychological support.

Many links include school handouts, classroom activities for children to understand the student’s diagnosis, letters to classmates’ parents, and educator training.

The amount of information can feel overwhelming, but national non-profits have customer support and volunteers that can provide specific support for your needs. This includes representatives who can attend IEP or teacher conferences and give training to the schools.

Many national non-profits have summer camps where children and families can learn, play and make lifelong friendships. In addition to having fun with camp activities, many include seminars for parents. These events and camps allow children to make friendships with others with the same diagnosis and find an inclusive community. Perrine Adams and her sons attend Camp George every summer, a family camp through the Tourette Association of America. All of the counselors have Tourette Syndrome, and many were once campers. The Adams family has made lifelong friendships and travels to visit other families throughout the year. It’s a unique support system for her son with Tourette’s and the entire family.

2. Facebook Groups: National and regional chapters have private groups where members can ask questions and coordinate community events (examples include picnics to gather and meet and events to raise awareness).

3. Local Chapters: In October, we featured Magic Babies Monterey County, a support group for families who the magic of Down syndrome has touched. Since its inception in 2012, approximately 100 families have joined, and the family-to-family support group was founded when two mothers came together and wanted to help others.

Parents of children with disabilities and neurodivergent children often seek out those connections or are happy to be someone those struggling can lean on and share experiences with. If you don’t know anyone, ask a school counselor, teacher, medical provider, therapist (such as OT or PT), or your child’s coach. Per HIPAA, they may not be able to give you information at that moment but can ask another parent for permission and introduce you two. I’ve met many mothers this way.

4. One-on-One Support: You’d be surprised how many parents you know have children with disabilities or concerns but don’t have people they feel can relate to. Even if the needs are different, the feelings are often similar. This is not only an opportunity to learn and share the resources you’ve used and the trials and errors you’ve experienced, but it’s an incredible bond when parents can relate to the unique struggles and challenges you face.

“You are not alone” is one of the most powerful phrases you can say to a parent of a child with a disability. Finding support groups or just talking with another parent over a cup of coffee, brings comfort and compassion, often when parents of children with disabilities and neurodivergent children need it the most.

Parenting OC