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Special Kids . . . Connect

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One of the most difficult challenges parents face when their child is diagnosed with a disability is feeling lost, helpless, and confused about what services can help and support them. Obtaining a medical diagnosis can take months, if not years, and is a laborious process that is often physically, mentally, emotionally, and financially exhausting. Navigating the school systems and advocating for your child’s rights is a mountain that can feel insurmountable. Luckily for the families in Monterey County, there is a local nonprofit whose mission is to develop resources, raise awareness, and provide support to children with disabilities and their families.

THE BEGINNING

Special Kids Connect (SKC) was founded in 2007 by parents of children with developmental disabilities. Originally named Special Kids Crusade, the CA Dept. of Developmental Services immediately designated the organization as Monterey County’s Early Start Family Resource Center. SKC is one of 47 organizations throughout the state that receive funding to provide navigation assistance and peer support to families with children ages 0-3 who have suspected or known developmental delays.

EXPANSION

SKC has expanded its program offerings in the years since, emphasizing 1:1 care coordination and support, parent education, and youth ability inclusion. By 2018, Special Kids Crusade had come to see itself more as a community connector than a crusader, and it changed its name to Special Kids Connect. Its capacity to serve Monterey County families was subsequently bolstered by competitive grant awards from the California Department of Developmental Services and the California Department of Education, which, in 2022, designated Special Kids Connect as Monterey County’s first Family Empowerment Center. Additional funding through local foundations and individual donations has allowed Special Kids Connect to develop new, innovative approaches to supporting Monterey County’s special needs community.

SUPPORT FOR ALL AGES

These days, Special Kids Connect is proud to be able to support families and individuals with special needs of all ages. While “kids” is still a part of their name, they posit that everyone is somebody’s “kid.” In addition to providing families with one-to-one support and guidance on special education and social service navigation, Special Kids Connect offers a number of monthly parent workshops, annual family-fun resource fair events, sibling workshops, monthly child development classes, an Inclusion Ambassadors Youth Volunteer League, emergency readiness training, child care provider training, Parent’s Night Out support groups, and more.

Among its most treasured programs are Special Kids Connect’s REACH offerings. Special Kids Connect’s tagline is “Helping Special Kids Reach for the Stars,” and REACH programs provide children with and without disabilities opportunities to reach for the stars together by taking part in recreational pursuits within inclusive community settings. REACH programs are offered in basketball, golf, bowling, boxing, swimming, soccer, art, and theatre. The heart of every 4 to 6-week REACH program is its ability to support social skills development. Neurotypical and neurodiverse youth come to learn that we are all more alike than we are different.

TOY LENDING LIBRARY

Another local treasure is Special Kids Connect’s STAR (Special Toys And Resources) Toy Library. Located in its Monterey office location, membership is free to all Monterey County families. Library inventory includes weighted blankets, compression vests, toys that support fine and gross motor skills, and cognitive and social skills development. More information and an inventory list are available at www.specialkidsconnect.org/toys.

Special Kids Connect collaborates with several local social service and education agencies. One of its closest collaborations is with Monterey County SELPA (Special Education Local Plan Area), whose role is to provide countywide regional coordination and leadership to families and professionals, offering resources in all areas of special education. A product of that collaboration will be a day-long Back to School Special Education Conference for Monterey County families on Saturday, August 19, at Hartnell College in Salinas.

FOR MORE INFORMATION:

Information about Special Kids Connect’s programs and events can be found on its website.

Specialkidsconnect.org houses an extensive resource library with a contact directory for local school district special education programs and businesses, videos on social service acquisition, and more.

Parents and professionals can also use the website to sign up for Special Kids Connect’s e-newsletters so they are among the first to know about a program or event.

Special Kids Connect’s programs and workshops are developed and fine-tuned based on community input. Every survey response, every email request, and every verbal request and suggestion is considered when programs are developed. Addressing families’ needs is Special Kids Connect’s top priority.

Special Monterey-Area Camps for Awesome Kids

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Growing Social

The warmth of the Watsonville sun shines brightly on Larkin Valley Farm, a small farm off Highway 1 at Airport Road. The farmstead feels like a world away as ducklings waddle by and students pick fresh raspberries and mulberry leaves from the orchard to feed the goats. Students collect grass from the ground and tie it onto a string along with veggie scraps for a group activity. The children chuckle as they go “chicken fishing” and hang the string through the fence for the hens and rooster to eat. Teens gather in the outdoor classroom to discuss ingredients to add to their cooking project. This farm makes an ideal outdoor classroom for the students at Growing Social to strengthen their social learning skills.

Growing Social’s Speech and Language Pathologists specialize in teaching social learning to neurodivergent students (including ADHD, Social Pragmatic Communication Disorder, Social Anxiety, and Autism). Their teaching is geared toward students who have solid language, cognitive, and learning abilities. Students are carefully matched in small groups of 3-5 to ensure they work on similar skills and goals. Parents fill out a comprehensive application packet that helps the team find an appropriate group placement.

Growing Social’s teachings includes “Social Thinking®,” an internationally recognized learning model that effectively explores the why behind social skills. The program’s Speech Language Pathologists and co-founders Stephanie Madrigal and Amy Miller, worked with the developer, Michelle Winner, for years in San Jose before starting Growing Social. “Social Thinking®” is commonly taught in school districts by teachers, speech pathologists, and counselors to help increase students’ perspective-taking ability (teaching students to consider their own and others’ thoughts, emotions, intentions, beliefs, and knowledge). Teaching social learning also includes supporting students with problem-solving, executive functioning, body/brain awareness, emotional regulation, social awareness, interaction with others, and self-advocacy.

Growing Social offers small group therapeutic summer camps, individual sessions, and a combination. In addition, teens and young adults can work as camp counselors, and the following teen camps are available: Community Farm/Based Camp (teens), Social Vocational Camp (16+ years), and Farm and Community Based Camps (teens). Growing Social also has seasonal camps in the fall and spring, including Saturday sessions. Most sessions occur on the farm, but Growing Social also supports students in their community and schools.

“At Growing Social, we celebrate neurodiversity and build community. We provide highly therapeutic teaching for those who want support in better understanding and navigating the social world. The farm setting creates an incredibly motivating and meaningful setting for students of all ages.”

FOR MORE INFO:

Applications are still being accepted for summer sessions. To find out more about Growing Social, their summer camp, and programs, visit growingsocial.org or contact Amy Miller and Stephanie Madrigal at (408) 806-4603.

Summer camp sessions are offered Monday-Thursday full-day (10:00 am-4:00 pm) or half-day sessions (10:00 am-1:00 pm or 1:30 pm-4:30 pm).

Whispering Pines Day Camp & City of Monterey Recreation

In the summer of 2023, Whispering Pines Day Camp will celebrate its 65th year in Monterey. This full-day camp has various nature and outdoor activities and adventures, including hiking, arts and crafts, cooking, folk dancing, and singing.

Whispering Pines is a day camp for ages five to nine, children with disabilities up to age 12 are eligible to attend. The staff at Whispering Pines have worked with children with various levels of needs, including Autism, Down syndrome, Cerebral Palsy, ADHD, and other neuro divergences and disabilities. Parents are encouraged to contact the staff at Whispering Pines about the accommodations their child needs and any documentation that may be informative, such as a 504 or IEP. Examples of accommodations include assigning a counselor to a student for additional support or allowing the camper’s “outside” aide to join the student at camp. Whispering Pines has a full camp schedule starting at 9:00 am and ending at 5:30 pm, but if a child needs reduced hours, they can get permission to be picked up early.

The City of Monterey’s Recreation Manager, Shannon Leon, emphasizes the importance of parents communicating their child’s needs and support systems. “Many children need accommodations, whether they have a medical diagnosis or not,” she shares. “We encourage parents to be transparent and reach out to build that relationship and prepare staff before camp. We want our parents to tell us what works best for their child and be honest with their needs so they can have the best experience and summer camp possible.”

The staff at Whispering Pines works closely with Special Kids Connect, a local nonprofit that develops resources, raises awareness, and supports children with disabilities and their families. Special Kids Connect partners with camp counselors and staff members to teach social interaction techniques that benefit children of all abilities and ages.

Staff is trained in emergency management, such as handling medical conditions like diabetes and allergies, including administering EpiPens. Legally they cannot administer insulin at this time but will work with parents to make accommodations.

Shannon Leon encourages parents to reach out and ask about accommodations for their recreation programs, including the Monterey Sports Center.

FOR MORE INFO:

Visit monterey.org/rec or contact a Monterey Recreation staff member at (831) 646-3866 or email: montereyrecreation@monterey.org.

Regardless of the type of summer camp or any special issue your child may have, it is important to communicate their needs to the staff. Education builds empathy and understanding, and when your child’s needs are seen and heard, their summer camp will be a more positive experience!

The 4-1-1 on Your Child’s 504 Plan

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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.

Challenges Parents of Children with Disabilities Face

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Parenthood presents challenges for all families but the complexities of raising children with disabilities and those who are neurodivergent can include additional stressors. For instance, what happens when parents disagree about a child’s diagnosis, medical decisions, and services? How can parents deal with the financial burden that comes with the myriad of services the child needs?

Here are some challenges you may face parenting a child with a disability and a few suggestions on how to deal with those challenges.  

When parents don’t agree:

The diagnosis process has different stages of acceptance, understanding, and grief. Parents are coping with their emotions, and their partners may feel differently. That can be incredibly upsetting, frustrating, and heartbreaking to navigate as a couple. There is so much mental and physical energy exerted on parenting. When a child has an exceptionality or disability that requires research, medical care, appointments, and services, there are additional stressors. Scheduling and attending appointments for the child can be physically, mentally, emotionally, and financially draining. Resentments and strain in the parents’ relationship can form when expectations of each person’s roles and responsibilities are not communicated and met.

A source of contention in a relationship can be parents disagreeing on medical decisions and services. Challenges include not agreeing on whether or not the child should take medication and what services to prioritize. An example would be one parent focusing on academic support such as tutoring while the other believes services such as occupational or speech therapy are what the child needs. 

Having parents attend the school’s 504 or IEP meetings and medical appointments is important so they can discuss concerns, gather feedback, and make informed decisions. When When one parent attends the meetings and therapy sessions alone, they can often feel the weight of shouldering the responsibility and summarizing what happened in the appointments, and relaying medical terminology can be frustrating. If work or transportation barriers prevent a parent from attending, request if virtual meetings are an option.

There are situations where some parents and family members will not accept a child’s diagnosis; whether it be a perceived shame, cultural stereotypes, unconscious biases, and lack of understanding, education, and empathy, some people will not be able to support their child and their needs. While this can impact blood-relative relationships, do not underestimate the powerful bonds built by educators, therapists, and friends who support your child with care, compassion, and love.

How to cope:

  • Counseling (couples or individuals)

  • Support Groups (see November 2022 issue for ideas)

  • Leaning on friends who have children with neurodiversity/disability

  • Contacting nonprofits that specialize in the child’s disability

  • Focus on one meeting, one medical appointment, and one therapy service at a time. Reshape your framework that these are individual steps and opportunities to move one step forward toward a bigger goal. Disability services and support will not be “fixed” in one appointment. It is a long journey that requires flexibility, patience, and adjustments. This is a marathon, not a sprint.  

  • As difficult as it is to practice, remember that self-care is not selfish. If a parent is exhausted, drained, and has unmet needs, taking care of children becomes incredibly difficult, sometimes debilitating. Some days making phone calls and researching a child’s diagnosis can feel too overwhelming; table those tasks for another day. Parents deserve to recharge and rest without guilt.      


One appointment leads to another: Now what?

If newborns came home with an instruction manual, neurodivergent children and those with disabilities would have an encyclopedia collection. Researching complex medical diagnoses and finding providers and services feels like a labyrinth – going into one meeting or medical appointment anticipating an outcome. Still, when it leads in a different direction, parents can leave feeling dizzy and frustrated with confusion—one step forward and two steps back. Appointments require time, research, and money, which can be stressful and expensive.  

The financial cost of a diagnosis and services

The American healthcare system does not serve and support people with disabilities and neurodivergence. Parents are forced to work within a complex system of health insurance coverage that is a headache. Some providers are strictly private pay and do not accept insurance. An insurance plan may not cover some services. This can feel especially exhausting and debilitating when so much time and effort was spent researching that service, getting hopes up that it could help, and then it not being covered or too expensive. 

The reality is that even with health insurance, the copays and costs are incredibly expensive, and many people cannot afford to pay for these resources. It is almost impossible for those who do not have health insurance. Some state and federally-funded programs, like the San Andreas Regional Center and their vendors, like Stars Therapy Services, are available. These incredible resources could benefit your children; please contact them for assessments to see if your child qualifies.  

What if I don’t like my doctor?

Last summer, my son and I had a horrific experience with a doctor where we didn’t feel supported and heard, and I left feeling guilty about taking my son to meet him. Finding a new provider can feel like a setback, and researching new providers and wait times often make people stay with doctors they don’t feel comfortable with out of necessity. Do not settle and compromise for medical providers and therapists who do not align with your values and support your family and child. 

Sometimes it is difficult for parents to accept that the life they envisioned with their child will not be the reality. They may not be able to throw a football with their son or daughter, or their child may not attend a four-year university while other friends’ children are leaving for college. There can be a grieving process that can vary during different stages of the child’s life. But navigating this life together teaches parents that each child’s individuality is their strength. Every child deserves to be loved, celebrated, and embraced as their authentic self. Focus on those passions, foster them, and empower your child to embrace their enthusiasm.   

Sabrina Hiltunen is a Career Development Instructor and works with college-aged and young adults with autism, ADHD, and other exceptionalities, coaching them on job and volunteer preparation, placement, and workplace expectations.

Navigating the IEP Process

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What is an IEP?

An Individualized Education Program (IEP) is a legally binding document created by a multidisciplinary team that is designed to meet the unique learning needs of a student with a disability. It is a roadmap for the educational team that details specific accommodations, services, specialized academic instruction, and modifications. Under the Individuals with Disabilities Education Act, every child is entitled to a Free Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE) (integrated into a general education classroom as much as possible).

The IEP is specialized for each student so the teachers and educators can understand the student’s disability and how that affects academic learning and social behaviors and provide services or additional support. Examples include a paraprofessional aide, speech therapy, physical and occupational therapy, counseling services, extra time for test taking, modified homework, and transportation. Parents/guardians are an integral part of the team, and the initial meeting is at least two parts: the MET 1 (to discuss whether data needs to be collected) and the MET 2/IEP (to discuss the results of evaluations and to create goals and objectives).

According to the Judicial Council of California, an IEP should include the following:

  • A statement of your child’s present levels of educational performance
  • A statement of measurable goals, including short and long-term objectives
  • A statement of the Special Education and related services needed
  • An explanation of the extent to which your child will not participate with non-disabled children
  • A projected date for services to begin

Suppose you believe your child has a disability that will impact their Education and needs special education services. You can submit a written assessment to the local education agency (LEA) or school district. Parents, medical providers, school psychologists, or teachers can submit the requests.

“An assessment is an evaluation process that usually involves tests, interviews, and observations designed to identify your child’s strengths and evaluate specific issues related to school performance,” explains the Judicial Council of California. You can request your child be evaluated in all areas for special education services or concentrated (such as speech therapy).

Before the IEP Meeting:

Request drafts of assessments and reports before the IEP meeting. The IEP meeting itself can feel overwhelming. Requiring drafts ahead of time will allow you to review them so you can prepare, have notes and questions ahead of time, and refer to specific recommendations they list.

  • Review the IEP draft and read it before signing. Do not feel pressured to sign the document at the IEP meeting without reading it.
  • You can tour all proposed placements and meet all teachers and providers before signing the IEP.
  • You should receive and read a “Notice of Procedural Safeguards” before the IEP meeting.
  • Assessments and tests must be administered in your child’s native language or mode of communication.
  • The IEP is a living document and can be edited and updated outside of the annual IEP meetings.

  What to Expect:

The assessments and evaluations have multiple steps and can be lengthy. The referral timeline is 15 days, followed by another 15 days for assessments (longer if it takes multiple meetings to complete one assessment, especially common in younger children and those with ADHD/ADD), then 60 days for the IEP meeting. The following steps are eligibility, classification, goals, placement, and services. Parents/caregivers will be asked to complete assessments about their child.

IEP meetings are scheduled annually, with progressive reports that should measure the goals placed in the annual IEP meeting. However, you can request an IEP meeting any time, and the school has 30 days to schedule the meeting. After the IEP and before its implementation, the school must provide you with prior written notice (PWN). Children receiving special education services will be reassessed every three years.

Understanding your rights also means not having to sign off on an IEP. According to the Judicial Council of California: “If you disagree with the school district’s assessment, you can request an independent assessment from qualified specialists at public expense. This request should be made in writing and directed to the district”

Reach out for Help and Guidance:

Understanding your child’s rights and your rights and responsibilities can be overwhelming. Do not hesitate to reach out for assistance.

Special Kids Connect is a local nonprofit whose mission is to develop resources and provide support to families in Monterey County. In June 2022, they received a grant from the California Dept. of Education that allows them to provide support to families who have a child involved in the special education system.

Jennifer Netniss, Education Director, explains: “We have a team of family support specialists who will meet 1:1 with family to talk about any area of concern or questions regarding special education.”

They will review your child’s IEP, help parents prepare for the meetings, strategize when you have a conflict, discuss how to resolve that conflict, and provide parent workshops.

National nonprofits may also have staff or volunteers to help with IEP goals and attend the meetings. There are also disability advocates and IEP consultants available for hire.

Qualifying for special education services and an IEP is a marathon, not a sprint. It will take several meetings and time to conduct assessments and create the child’s educational plan. Unfortunately, it’s a situation where as parents, we learn as we go and there are many unknowns. Researching your rights as parents and your child’s rights, seeking help from experts, and familiarizing yourself with the IEP process and expectations will empower you to advocate for your child and the services they are entitled to through FAPE.

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

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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