How a Parent Advocate Can Support A Special Needs Child During a Divorce

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Rebecca Stern, Founder of Pearl Mediation, is a certified divorce and family mediator. She works with couples across the country online in both amicable and high-conflict situations and has unique expertise in helping families of children with special education needs.

Rebecca’s own personal experiences with parenting a child with high functioning autism, and doing so while going through her own divorce, inform her practice and show in her empathy. Rebecca spoke to T.H. and Jessica on the Divorce etc… podcast all about getting through a divorce with a special needs child. “I was fighting to get my son to the program he desperately needed, with the added pressure of fighting with his Dad over supporting the plan. It felt like I had to choose between an amicable divorce and ensuring my child had a shot at the life I knew he was capable of.”

Defining Special Needs

Special needs is broad term that can refer to everything from a child with ADHD who’s distractibility interferes with their ability to perform in school or focus on daily tasks, to a specific learning disability, a physical challenge, or a profound disability. Schools identify special needs through evaluations, and if your child has an IEP (Individualized Education Plan) or a 504, they fall into this group. And depending on how severe their needs, and which services they need and are being given by the school, the family may have a parent advocate working with them. 

Role of the Parent Advocate in School

A special education parent advocate is hired by the parents (a few states actually provide an advocate to families), to ensure the school district provides what’s needed, as parents and the school’s Child Study Team often disagree.

T.H. says she knows this process very well, as she has two children with dyslexia and dysgraphia – one also struggled with severe generalized anxiety. She talks about how glad she is that she had a parent advocate at her side throughout the IEP process, which enabled her to get what her children needed.

Advocates, education attorneys and educational consultants can help you understand the terrain, find the right professionals and programs, and validate your experience.

Role of the Parent Advocate in Divorce

When parents divorce, they must create a Custody & Parenting Agreement. That Parenting Plan is going to include everything from who’s making the decisions to what your parenting time schedule looks like. For a family with a special needs child, Rebecca believes in creating a Special Needs Parenting Plan, a plan that considers your child’s unique needs, and acknowledges how those needs may impact different parts of your overall agreement. 

How important it is to have a plan, and how detailed, is driven by the severity of the challenges, and how good the communication is between the parents. Jessica talks about the fact that she and her first husband communicated well with each other about their children (and still do). They viewed the mild sensory processing issues of their son similarly and didn’t run into problems agreeing upon advocating to get him all of the services he was entitled to, which included occupational therapy for his first several years of elementary school. T.H. has a less cooperative co-parent, and their communication is more fraught. When things are more contentious, and blame is being tossed around, more detail in an agreement can head off disputes.

So what if your co-parent is demanding equal physical custody, but doesn’t agree with what you know to be necessary support? What if your child isn’t going to be able to live independently by the standard age of emancipation in your state? Rebecca warns that asking these questions before you sign on the dotted line of your divorce agreement may be critical to your child’s wellbeing.

Determining Accommodations at Home

Just like professional evaluators inform an IEP at school, enlisting clinical professionals to guide parents through these agreements for the home can be invaluable. Rebecca explains that what goes into your parenting plan is a matter of agreement. If you’re arguing with your ex, telling your co-parent what your child needs might not get you very far. But if you bring in an advocate, a clinical professional, the words of that professional may be heard very differently.

Ultimately most people want to be good parents. If they’re hearing from a professional, “Look, I’ve seen this a lot before, this can help with that particular condition, and this is why it should be in here,” they’re going to be more open to it. Maybe your child sees a therapist, takes medication, and doesn’t do well with frequent transitions. Whatever it is that’s going to help keep things on track needs to be discussed.

T.H. and Rebecca talked about how they both have sons who attended wilderness programs and therapeutic boarding schools (which they both credit with saving their lives). Those were big decisions and big expenses. You can imagine how these things can impact relationships, wallets, and negotiations if you’re not on the same page with your ex. If you can anticipate the possibility of needing expensive services, you can plan for how you’re going to share these costs, and that may be different from how you’ll be sharing the cost of the basketball uniform or the co-pay at the pediatrician.

Resolving Disputes Over What You Child Needs

If one parent has sole legal (decision-making) custody, there’s no need for a tie-breaker, but often decision-making is joint and parents aren’t aligned. Rebecca suggests to clients that if they’ve been working with a professional they both trust with their child’s wellbeing – let’s say a therapist – that they name that person (or a professional of mutual selection) in their agreement as having the authority, in the case of parental disagreement, to provide a recommendation that the parties commit to abide by. This puts a decision in controversy in the hands of someone whose interest is not clouded by issues beyond seeing the child thrive, and who has background knowledge and professional experience. It also saves the parents from having to go to mediation or court to resolve the issue.

If You Have To Go To Court

Just as it’s more effective for your ex to hear a recommendation from a professional, it’s helpful for your judge to hear what’s best from an expert with specialized training. And it’s even better if it’s someone you’ve mutually relied upon in the past. Let’s say you have to attend a hearing on an issue related to your child’s needs. Rather than take either party’s word on what’s best, a judge is really going to want to hear it from a professional. If you have for instance a twenty-page report from the neuropsychologist you jointly took your child to see, that offers detailed recommendations, based on testing data, and clearly explains what kind of environment your child needs, what their triggers are, what counseling is necessary, etc., you can be certain that will inform the judge’s decision.

The Cost of Services

Part of the complexity when divorcing with a child with special needs is that most parents have no idea what services they’re entitled to from their school district. Services can range from a $2.00 stress toy to a $150,000 per year tuition bill. The negotiation and disagreements over money in your settlement can reach epic proportions, but both Rebecca and T.H. know firsthand that the reality is you may be fighting over costs that your school district is responsible for. So how do you know what you’re entitled to before reaching into your own wallet?

Every child is protected by a federal law called the Individuals with Disabilities Education Act (IDEA). If a student, because of a disability, needs specific support to be able to access their education, the district has an affirmative obligation to provide that support. If they don’t have the resources, they still have the obligation and will have to pay for your child to receive the service elsewhere. But what if the district evaluates your child and you disagree with their findings? You are entitled to a second, independent evaluation at the district’s expense. The school is not going to volunteer this information.

Understanding your child’s rights, and the tools available to protect those rights is essential to advocate for what’s needed whether at school, or with your co-parent.

Keep Asking

We’ve been conditioned to present ourselves to the world as if we always have our shit together. But go try and find a real person out there who is as perfect as their social media would have you believe. Life is messy. Letting people see our bruises, and asking for help when we need it, is brave. And in the case of your child with special needs, it just might change their trajectory in life.

The Importance of Community

Having a child with special needs and going through a divorce are two of the most isolating experiences. Rebecca says you feel like nobody understands what you’re going through. Sometimes you feel like you’re going crazy. This is really hard stuff. When you let your vulnerability show, and share your story with others who’ve been down the same road, you open the door to learning the right questions to ask, how to avoid missteps, where to find the best resources, and increase your ability to hang onto your sanity during the added difficulty of the divorce.

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