I had to put one foot in front of the other and start making calls, arranging appointments, finding practitioners, and on and on. It is a daunting task to find the necessary medical and educational resources, while also trying to manage the day to day responsibilities of work and family life. While there are many resources available, navigating them is difficult and time-consuming, causing feelings of frustration, isolation and despair.
One of the biggest challenges I face is finding medical care that truly fits my son’s unique needs. Children with complex conditions often require specialists who understand the nuances of their diagnosis. Those professionals can be hard to find. Sometimes, that means traveling to another city or even out of state. Other times, it means waiting months just to see a doctor with the right experience.
TIPS FROM THE TRENCHES
While you wait to see the specialists your child needs, check to see if there is an organization or foundation related to your child’s condition. These groups can offer resources, and often have staff available to take your calls and answer questions. Some major hospitals also offer social workers to aide you in your journey with your child’s condition. While awaiting care from a traditional western practitioner, you might also find some answers from a functional medicine doctor. The Institute for Functional Medicine website (https://www.ifm.org) is a great place to start. Be sure to do your research and ask for referrals. (Pro Tip: I found local moms’ groups on social media platforms like Facebook to be a great resource for vetting potential providers.)
As if the medical aspect of parenting your child with special needs isn’t enough to deal with, you also have to navigate the educational component of your child’s life. Children with special needs often require specialized educational support, including accommodations and modifications to their learning environment. It’s imperative for parents to understand their child’s rights under the Individuals with Disabilities Education Act, as well as the meaning of terms like Individualized Education Plan (I.E.P.), 504 Plan, Least Restrictive Environment, and Free and Appropriate Public Education (F.A.P.E.). While it is the responsibility of your child’s school to provide them with the setting, resources and accommodations they require to best access their curriculum, many schools may not have the expertise in your child’s particular condition, or the specialized staff members necessary to provide the level of support your child needs. This can result in children not receiving the education they need in order to succeed, and parents feeling frustrated and overwhelmed.
It’s important to intervene as early as possible when facing developmental delays, intellectual disabilities or other learning challenges. Talk with your child’s pediatrician about whether or not they might need Early Intervention services provided by your state or county. These services are designed to help young children who may be at risk of developmental delays or disabilities, and are typically offered to children from birth to three years of age, although some programs may extend services to children up to five years old.
Don’t Delay : Early Intervention Services
The goal of early intervention services is to identify children who may be at risk of developmental delays or disabilities as early as possible, and to provide them with the necessary support and services to help them reach their full potential. This may include services such as:
- Developmental screenings: Healthcare professionals and early intervention specialists may conduct regular screenings to identify any potential delays or disabilities.
- Early education: This includes educational programs and activities designed to promote a child’s physical, social, emotional, and cognitive development.
- Therapy: This includes services such as speech therapy, occupational therapy, or physical therapy, depending on a child’s individual needs.
- Family support: This includes various types of support including: counseling, education, and resources to help families better understand their child’s needs and how to support their development.
Early intervention services are typically provided by a team of professionals including: healthcare providers, educators, and therapists. These professionals work together to create an individualized plan for each child, based on their unique needs and strengths. By providing early intervention services, children have a better chance of reaching their full potential and achieving their developmental milestones.
In Good Measure : Obtaining an Evaluation
Once your child is of school age, you’ll want to seek evaluation for special education services if you’re still concerned about their progress and academic readiness. This can be a complex process, but following these steps can help guide you through it:
- Request an evaluation: If you suspect that your child may have a disability or special needs, the first step is to request an evaluation from your child’s school district. This request should be made in writing and sent to the principal or special education director at your child’s school. Be sure to include as much information as you can regarding your specific concerns, and any documentation or evaluations you may have from other providers.
- Consent to the evaluation: Once you have made the request for an evaluation, the school will contact you so you can provide written consent to allow the school district to evaluate your child.
- Evaluation: The school district will conduct an evaluation of your child to determine if they are eligible for special education services. The evaluation may include assessments, observations, and input from therapists and other professionals.
- Eligibility determination: After the evaluation is complete, the school district will hold a meeting with you to discuss the results and determine if your child is eligible for special education services.
- Individualized Education Program (IEP): If your child is found eligible for special education services, the next step is to develop an Individualized Education Program (IEP) that outlines their specific educational needs, goals, and services. This plan will be developed with input from you, your child’s teacher, and other professionals. If they do not meet the criteria for an IEP, they may be eligible for a 504 depending on their specific medical condition, and how it affects their ability to fully participate in their school day.
- Service delivery: Once the IEP or 504 is in place, your child’s school will begin providing the services outlined in the plan. These services may include special education instruction, therapy services, and accommodations or modifications to support their learning.
- Review and revision: The IEP or 504 will be reviewed and revised on an annual basis to ensure that your child’s needs are being met and that their progress is being monitored.
It’s important to note that the process for accessing special education services may vary slightly depending on your state or school district. You can contact your child’s school or district special education department to learn more about their specific process and requirements. Many resources are available to help guide you through the special education process, such as advocacy groups and free Parent Training and Information Centers (PTI). You can find your state’s PTI at www.parentcenterhub.org/find-your-center.
Navigating the complexities of securing the best medical care and educational program for your child can be incredibly challenging. By taking each process one step at a time, and seeking support when you need it, you can accomplish so much. Keep your end goal in mind. Ask for assistance from parents who’ve been down a similar path, or trained professionals/parent coaches, and keep pushing forward. You are your child’s best advocate and in many cases, you are your child’s voice. Make sure it’s heard. You’ve got this!
ABOUT THE AUTHOR:
Carinne Mossa is the founder of It Takes a Village Special Needs Parent Coaching LLC and a dedicated advocate for families navigating the complexities of raising children with special needs. A former elementary educator with degrees in education, psychology, and communications, Carinne’s journey was forever shaped by her son’s diagnoses of Dravet Syndrome and Autism. With a blend of professional expertise and personal experience, Carinne empowers parents to confidently navigate medical and educational systems to secure the best outcomes for their children. Through coaching, writing, and speaking, she is committed to creating a world where every family feels supported and equipped to thrive.
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