An “Alleged Incapacitated Person” aka OK, Our Child Has A Disability. Now What Do We Do?

Parents see their children with their hearts, not their objective minds. That makes it exceedingly difficult to accept it when the unexpected – a cognitive impairment, a learning disability, a spectrum disorder – starts to impact their child. Michelle Krone, an attorney at Price, Meese, Schulman & D’Arminio, P.C. in Woodcliff Lake, NJ does an excellent job spelling out how to engage your local school district if you know or suspect your child has a disability in her 2017 article: My Child Has a Disability – Now What? .While every school system in every state is different, the basic process for getting special services is essentially the same.

Read Michelle’s article. Follow the steps she outlines. Then come back and read the rest of this article, which offers some insight, from a parent’s perspective, on things you may want to consider if your child is disabled. I wish I’d had this information when my son was first diagnosed with Autism!

Please Note: I am not a special education professional. I am not trained in law, medicine, psychology or psychiatry. The following is not advice, merely suggestions. Always consult with the appropriate professional before taking any action.  

  • Know Your Rights, And Those Of Your Child. The Individuals With Disability Act (IDEA) and Fair And Appropriate Education (FAPE) legislation are your best friends. These 2 bits of federal law are (part of) what form the legal framework for getting your child set up with an Individualized Education Plan (IEP). More on the dreaded IEP later. For a basic outline of those rights, check out Karen Edler’s, also of Price Meese, article on Parental Rights in Special Education. Full Disclosure, Karen and Michelle are our Special Needs Attorney and Advocate. They didn’t ask me to mention them in any way shape or form, and I am not being compensated in any way, shape or form for doing so. However, if you do need a special needs attorney in Bergen County, I am happy to recommend them.
  • Consult With An Attorney And Advocate, Even If The School District Is Being Proactive. Contact a special needs attorney and ask for a consultation. Bring them your child’s evaluations. Ask them to evaluate those evaluations. Special needs attorneys and advocates are specifically trained in this area and handle literally hundreds of such cases. You are one parent, or parenting team. That is your child. There is no way you can be completely objective about their abilities or their future. If you or any of your fellow special needs parents could, we all wouldn’t loathe IEP meetings so much.
  • Read The IEP And Raise Your Voice During The IEP Meeting. IEPs, and IEP meetings, will make you tired, very very tired. They are about as uplifting as the New Jersey Turnpike. They are more confusing than a Boston Metro Rotary. IEPs are also just as necesssary. Read the IEP, and all of the evaluations of your child that go into it, before the IEP Meeting. Do not be afraid to ask questions and make requests for your child. If you do not feel the IEP is being followed, ask why it isn’t and demand that it be. If you feel you aren’t getting adequate support from the school or the school district, and nothing you do is making a difference, go back to the bullet above.
  • Don’t Be Afraid To Ask For What Your Child Needs. The worst a school district or school can ever say in response to a special needs request is “No.” “No” is depressing. “No” is not the end of the world. Submit requests in writing via mail or email and cc all involved parties. Provide a rationale for your request. If it is refused, insist on getting a written response stating why. You have that right under IDEA and FAPE (See! I told you they are your best friends).
  • Play Nice With The School District And The School Itself. Even when you complain, and yes, my ex-husband and I have had to, offer to work with the school system to resolve the issue you’re complaining about. Comment on the things the school system and its staff do right. Karen and Michelle have made a world of difference to our son since we engaged them, however, there are still things TheEx and I are livid about. Don’t rant indiscriminately to the school district. You will close ears, and your child doesn’t need that. That said, especially if you don’t have legal representation, raise your voice as loud and as high as you can. I once – firmly but politely – complained to a superintendent on an issue.
  • Support Your Co-Parent, Whatever Your Relationship Status. No matter what your relationship with your child’s other parent, agree to work together for your child. Each parent can take a role that caters to their strengths. If you’re not comfortable working with the school system, let your co-parent do that. If your co-parent works long hours and can’t make doctor’s appointments and do after school activity pickups, take those on.
  • Plan For The Worst Case Scenario. When TheEx and I divorced in 2005 there was no indication we could see that “Leading Man #1” wouldn’t go on to college and live at least moderately independently. Just over 10 years later, we are signing off on permanent guardianship paperwork. Don’t get caught by the future. Set aside money in advance for medical and learning specialists such as tutors, psychiatrists, therapists, attorneys, advocates. Doing so when your child is first diagnosed will ensure you can engage those resources if you ever need them without impacting your current budget.
  • Establish Guardianship If Something Happens To You. This is a must for ALL parents. Set up and/or update your will. Ensures it states who will take care of your child if both you and your co-parent pass away unexpectedly. Engage a financial adviser or estate planner and establish a financial plan to ensure your child is cared for if that happens. Set up a savings account or other such vehicle and start funding it now. Be sure when you do you also engage a CPA to advise you on any sort of tax implications related to the vehicle you choose.  
  • Skip The Guilt and Blame. Don’t blame yourself or your co-parent for your child’s disability. So much of our children’s lives, starting in the womb, is beyond our control. Don’t feel guilty about it. You won’t do your child any good if you do. You can’t present a strong presence at an IEP meeting if you feel like you did something awful to make your child disabled. Don’t let your child see you feeling guilty. You don’t want to risk them erroneously thinking they made you sad. It’s okay to feel those things. Let them pass. Nothing you could have done then would have changed where you are now.
  • Take Care Of Yourself. If you get sick, go to a doctor. If you start feeling overrun and need a break, lean on your co-parent and take one. You won’t be any good to your child if you aren’t good to yourself first. You can’t raise a neurotypical child if you’re overrun with the flu or stressed out. You definitely will not be able to take care of a special needs child that way.
  • Embrace The Extraordinary! Disabled children are exhausting. Disabled children are tough. Disabled children are beyond amazing. I have often wished things were easier for my child. I have never wished for a different, “normal” child. Even on the worst days, I’m thrilled and grateful. That awful IEP Meeting means I’m MY son’s parent. Celebrate every single small victory. Be inspired by how your child overcomes even the smallest obstacles. Share your autistic child’s obsession with a topic. Listen to audiobooks with your dyslexic child. Give your child all of the tools they need to thrive and cheer loudly when they do, even though you won’t be surprised they did.

My own little “Special Needs Parent” corner of the ‘Net is called The Mother Rogue. Feel free to find me there if you want to know more about Autism, non-custodial motherhood, or if you just want to laugh at how my current and ex-husbands continuously chide me for burning through Toyota Camry LE’s in my determination to make 210 miles a non-obstacle to being, simply, Mom.

–CMR

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Cristina M. Miller

Business Writer and Editor Specializing in Proposals, Grants, Medical, Technical, Scientific and Financial Documentation.

Outspoken Disability Needs Advocate.

Java-Fueled Word Nerd.

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