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I think we lose sight of the beauty, the most beautiful things I look back on in my life are coming out from underneath things I didn’t know I could get out from underneath. You know, the moments I look back in my life, and think, those were the moments that made me — were moments of struggle.

Brene Brown radio interview with On Being host, Krista Tippet, The Courage to Be Vulnerable, January 29th, 2015, https://onbeing.org/programs/brene-brown-the-courage-to-be-vulnerable-ja...

About six years ago, as I was waiting in the check out aisle of Trader Joes, with my first born, about two months old, strapped to me asleep in his bjorn, the woman standing next to me started chatting with me about parenting and almost as an afterthought commented how the needs of our babies are all consuming but also so straightforward and only get more complicated with age. (Although I’m sure parents of infants with medical issues might disagree). At the time, her comment hit me like a freight train. My son had cried so hard the whole car ride to the store and when I parked and lifted him out of his car seat, he was covered in sweat, dark hair matted to his head, face red from crying so hard. For a while, I just sat in the backseat and held him tight holding back tears myself. At the time, I felt like I couldn’t contemplate MORE or MORE complicated.

There’s no other relationship where one is responsible over another being’s health, safety and development from birth on. And yet the more independent and out in the world our children become, the more powerless and vulnerable we may feel in bearing witness to and figuring out how to help our children navigate life’s inevitable struggles and pain.  Providing emotional connection, a safe home for your child to sleep and eat, making pediatrician’s appointments may be necessary but are no longer enough. Their lives are no longer just about their connection to a parent or their primary caregiver but also peers, teachers, coaches and meeting academic demands and social pressures.

Our feelings of vulnerability are only compounded when we have a child who is different in some way – they have a visible or invisible difference, they struggle with mental illness, they are just wired a little differently, they are sorting out their identity, they are picked on by their peers, the list goes on.  Not to mention living in a culture that often measures parents and their children by our children’s accomplishments.  Depending on the moment, when we our children struggle, we may find ourselves feeling guilt, anxiety, shame, anger at ourselves, our partners or spouses or even our children for struggling in ways we feel like we cannot fully understand or know how to address.

But as uncomfortable and sometimes scary this vulnerability makes parents feel, it’s also that instinctual, unconditional love, willingness to jump in front of a on-coming speeding train for our children, life experience and deep knowledge of our individual children that makes parents uniquely qualified to be our children’s best advocates and as are children grow up, model for them how to advocate for themselves.

So what does being your child’s advocate look like? It can take a whole variety of forms but especially for those concerned that their child is experiencing a developmental delay or could benefit from special education and related services can include the following:

1.     Seeking an assessment through your state’s services or a private evaluation if you are concerned that your child might have a developmental delay or a disability.

·       Children from birth to two years old are eligible for screenings, evaluations, service coordination and an Individualized Family Service Plan (IFSP) at no cost to the family through Early Intervention Program for Infants and Toddlers With Disabilities, or Part C of the Individuals With Disabilities Education Act (IDEA). Services address functional and developmental needs of children and are provided in the natural environment of your child. (For more information, visit resources provided by your state or a nonprofit like Zero to Three, whose mission is to ensure all babies and toddlers have a strong start in life and offers a range of online parent resources for infants and toddlers: https://www.zerotothree.org/early-development/early-intervention

·       Section 619 of Part B of the IDEA is the preschool program that provides special education services for children first identified with disabilities between ages 3 and 5. These services are provided at no costs to parents and are often provided in your child’s preschool classroom. For more information, a great resource is www.understood.org/en/learning-attention-issues/treatments-approaches/early-intervention/how-section-619-can-help-your-preschooler. Note: eligibility for services may be different for children enrolled in an independent school.

·       Children in K-12 enrolled within the local public school system may be eligible for services documented in an Individualized Education Program (IEP) under Part B of IDEA or a 504 plans under Section 504 of the Rehabilitation Act of 1973 or the ADA, The Americans with Disabilities Act of 1990. https://sites.ed.gov/idea/. For a resource on private schools and special education, visit: https://www.understood.org/en/school-learning/choosing-starting-school/finding-right-school/6-things-to-know-about-private-schools-and-special-education; https://www.understood.org/en/school-learning/your-childs-rights/evaluat...

2.     Educating yourself about your child’s specific challenge/s or disabilities.

3.     For school aged children, collaborating with and forming a good working relationship with your child’s teachers and school.

4.     Ensuring that your child is receiving appropriate services.

5.     Understanding what is required under the law. What are your rights as a parent and your child’s educational rights, and if you need additional help, consulting an educational advocate or special education attorney.

6.     Connecting with leading organizations that support and assist parents in advocating for their children in education.

·       The Parent Readiness and Empowerment Program of the Lawyers Committee for Civil Rights (PREP), https://prepparents.org/ offers free video tutorials, webinars and guides to help parents practice their advocacy skills and on topics including navigating your school system, special education, English language learners, school discipline, bullying, harassment and discrimination as well as specific guides on education law.

·       PREP also offers low-income parents in California, New York and Mississippi a the opportunity to chat for free via phone or video with pro bono attorneys to discuss advocacy tips, resources and legal information specific to your child’s educational issues on all of the above topics. To make an appointment, visit https://prepparents.org/appointments/.

·       The Individuals with Disabilities in Education Act (IDEA) provides money for each state to have at least one Parent Training and Information Center. PTIs offer parents of children from birth to age 22, who have all types of disabilities, free workshops, support and information on how to make the most of their child’s education including about specific disabilities and issues, parental and child rights under the law, educational specialists, legal assistance and other local, state and national resources. A state-by-state listing of Parent Centers can be found at: http://www.parentcenterhub.org/find-your-center/.

·       The Council of Parent Attorneys and Advocates Inc., http://www.copaa.org/, helps parents to work more effectively with school personnel to plan and obtain effective educational programs for their children with disabilities as well as locate advocates, attorneys and related professionals. 


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