The Stew of Special Needs Education: Indispensable Basics for Every Caregiver

Finding the right educational setting for a child with special needs is one of the most confusing and difficult challenges a parent can face. My search for help for my two children on the autism spectrum involved frustration, fear, and lots of trial and error, but along the way I learned some valuable lessons.

Every parent’s experiences are different, but the journey usually begins in the same place—a place of love and hope that your child will receive the best possible education from the most qualified team. So, like a comadre with a secret recipe, I want to share some of the basic ingredients of effective advocacy for a child with special needs.

Like your abuela’s or tia’s favorite dish, this will take time to master. Keep at it. It will get better as you go. 

  1. Have your child assessed.
    Parents have the right to request that the school evaluate your child if you think he or she may have a disability. Be sure that your request is in writing. This written request will put a required process into motion that will allow you to work with the school on behalf of your child to see if there is a need for special education support and services.
  2. Understand your child’s specific challenges. It’s critical that you know what the core struggles are for your child. The school’s assessment, and your investigation of what it means, will help as you plan for support. Get information from trustworthy sources, and educate yourself about your child’s learning differences and style, and create goals for what the support program will look like. The Internet is a great resource, of course, but be smart about how you use it. Try to filter for flaky sources like people grinding axes.
  3. Gather your ingredients. You make better decisions when you are better informed. You wouldn’t start a recipe without reading it to the end and collecting all the ingredients first. In the case of special ed, make sure you know what all the parts are. You may find this aspect of the challenge the hardest. It takes a while to get used to all the acronyms and understand the jargon. The people tossing them at you may have forgotten how bewildering they can be, but it’s their job to help you get it. Ask lots of questions, and keep asking until you understand.
  4. Understand the laws. All public schools must abide by minimum standards outlined in the federal Individuals with Disabilities Education Act (IDEA), which requires a free, appropriate, public education for all students and can provide access to special services for children with learning disabilities who qualify for them. The criteria for eligibility vary from state to state, so be sure to contact your local school district office, local parent training and information center, or state department of education to find out what applies to you.
  5. Understand your rights. Your child has the right to a public education. That means you have the right to: 1) Participate in decisions made about your child’s education,                                                 2) Receive decisions made about your child within legislated timelines, 3) Request a review of decisions made about your child’s education and 4) Appeal decisions made about your child’s education. 
  6. Get organized—and stay organized.  Keep all your educational records and assessment information in a carefully maintained file. Ask for full names and contact information when communicating by phone or by email, and always take notes.Keep less formal examples of children’s academic progress on file as well–homework, artwork, and papers may be useful in establishing patterns and documenting both abilities and challenges.

Read, ask, listen, learn—that’s doable, right? But, of course, there’s always more you can do. 

  1. Come to meetings prepared.  Be ready to talk about the specific outcomes you seek. Be clear, calm, and direct and put things–and share things–in writing whenever possible. Listen, and take time to respond thoughtfully.
  2. Follow through.  I can’t stress this enough: all the lengthy meetings and planning and good intentions won’t amount to much if you don’t make sure your program is implemented.Also, for your own sake, keep adding to your own knowledge base. Some resources are at our fingertips today, and there will be more tomorrow.Perhaps you do well one on one: there are many other caregivers in your situation. Look around for support groups or a friend in your social circle to trade information with. In addition to the Internet, you can find information at the library in books and audiobooks. You may want to attend a workshop or conference or even find an organization willing to send you and cover the costs.
  3.  Remember the whole child. Your child’s struggle isn’t the only thing that matters: talents and passions are equally important. Be sure to share your child’s strengths and interests with educators and others. Shared interests are a crucial path to relationships.
  4. Communicate. Get to know the people who make decisions about your child’s education and establish a good rapport. Healthy relationships will help you in your need to know whether the school is creating a good learning environment and the services or programs you’re entitled to.

That’s the nitty gritty. You want more? I got more!

    1. Focus on Solutions
      Problems—we’ve all got ‘em. When you run into to trouble, identify ways to solve the problem and stress positive approaches. Oftentimes the solution to a dispute between a family and a school or district comes down to a communication breakdown or a difference in opinion that can be addressed in a positive way.
    2. Talk with your child’s teacher on a regular basis.
      Think of your child’s teacher as your closest ally. You’re both invested in your child’s success. Do whatever you can to make sure the teacher thinks of you the same way.Check in periodically by email, volunteer in the classroom, or see if the teacher is open to participating in an online log.Beyond the classroom, there are other ways to tune in to your child’s environment. Try volunteering for field trips, and help out with school functions. Join the PTA, school council, or booster club. Your focus is your own child, but it never hurts to understand the bigger picture.You may have concerns that the teacher can’t address. Keeping the teacher aware of your alliance, don’t be afraid to go up the chain of command, all the way to the district level if need be.
    3. Build your team.  You don’t have to go it alone. Connect with a family member or friend who can offer moral support. Is there someone who can accompany you to important meetings and help with note taking? Connect with community agencies that can offer support and additional resources. Network with other families or groups who can provide you with information about the journey and what to expect.Remember what you want to accomplish. Details are important, but don’t let them get in the way of the ultimate goal: the best educational experience for your child.

Last thing!  Don’t forget to include your child in the journey. Self-advocacy is one of the keys to becoming a successful adult. It’s not going to be easy (what complex recipe is?), but if you follow these basic instructions, you will end up with a mixture of knowledge, support, and action that will serve you and your child all your lives.

Resources

Here are a few links for details on your rights and the law.

Disability Rights Legal Center

Education Advocacy Manual (English)

Education Advocacy Manual (Español)

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Lisette Medina Duarte

Co-Chair at State Council on Developmental Disabilities

Lisette Medina-Duarte She is a mother of two beautiful children, both of whom are are on the autism spectrum. Having one child in a charter school, and the other is in a traditional public school, Lizette is deeply committed to working with underserved and underprivileged communities. She is a grassroots organizer and finds passion in serving as an educational advocate for disability rights, and equality and inclusions for African American and Latino communities of Greater Los Angeles. In addition to managing multiple outreach, volunteer, and advocacy campaigns, Duarte’s 20 years of administrative experience includes fundraising, engagement, events, and sponsorship procurement. She is currently a member of the advisory board for UCLA’s Tarjan Center and a member of the Empowerment Congress. Duarte was appointed by former Los Angeles County Supervisor Gloria Molina to the state Council on Developmental Disabilities. She is also a member of the Community Police Advisory Board for the Northeast Los Angeles Police Department, and serves as a board member for several California nonprofits.

3 thoughts on “The Stew of Special Needs Education: Indispensable Basics for Every Caregiver

  1. Pingback: ¿Está Detectando Señales de Alerta de Autismo? Aprenda Consejos de La Comadre Lisette - La Comadre

  2. Pingback: Are You Seeing Red Flags for Autism? Learn Tips from La Comadre Lisette - La Comadre

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    The links to Education Advocacy Manual both English and Spanish lead to Page Not Found. Are there other ways to access these documents?

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