Finding out your that child has an official diagnosis is often both a relief and a kick to the gut. The day you find out the reason why your child has been struggling in school or having medical challenges is a day you never forget. Feelings of worry and instability are quickly followed by bewilderment and overwhelm. Where do you start? There are no handbooks. Even if your child's doctor does provide a pamphlet on the condition, you still have to put one foot in front of the other and start making calls, arranging appointments, finding practitioners, and on and on. It is a challenging and overwhelming task to find the necessary medical and educational resources for your child while also trying to manage your day to day responsibilities. While there are many resources available, navigating them can be difficult and time-consuming, leaving parents feeling frustrated, isolated and lost.
One of the biggest struggles parents of children with special needs face is finding adequate medical care. Children with special needs often require specialized care from medical professionals who have experience working with their specific condition. However, finding these professionals can be a difficult task. Many parents find themselves traveling long distances to see specialists in other cities or states. Others end up having to wait months to see a doctor who has experience with their child's condition. This can leave parents struggling in the cross-hairs--tirelessly searching the Internet for the latest treatments, interventionists, research and best-practices related to their child's diagnosis.
So what's a desperate, exhausted parent to do? 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 plentiful 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 is a great place to start. Be sure to do your research and ask for referrals. (Local moms groups can 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 necessary to provide the level of support your child needs. This can result in children not receiving the education they need 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 doctor about whether or not they might need Early Intervention services provided by your state. 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. 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: Early intervention services may provide educational programs and activities designed to promote a child's physical, social, emotional, and cognitive development.
Therapy: Early intervention services may provide therapy services such as speech therapy, occupational therapy, or physical therapy, depending on a child's individual needs.
Family support: Early intervention services may offer support to families, including counseling, education, and resources to help them 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.
Once your child is of school age, you'll want to consider getting your child special education services within a public school setting. This can be a complex process, but the 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 can be made in writing or by contacting the special education director at your child's school.
Consent to the evaluation: Once you have made the request for an evaluation, you will need to 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 teachers 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.
Service delivery: Once the IEP 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 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 depending on your state or school district. You can contact your child's school or district to learn more about their specific process and requirements. Additionally, there are many resources available to help guide you through the special education process, such as advocacy groups and parent support organizations like It Takes a Village Special Needs Parent Coaching.
There are many complexities to arranging the best medical care and educational program for your child, but by taking each process one step at a time and seeking support when you need it, much can be accomplished. Keep your end goal in mind, ask for assistance from parents who've been through something similar or trained professionals/parent coaches, and keep pushing forward. You are your child's best advocate and in many cases, you are their voice. Make sure they're heard. You've got this!
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