Determining Where To Start as Your Child with Special Needs Nears Adulthood

Determining where to start as your child with special needs nears adulthood is no easy task. There are legal matters to address such as special needs trusts and guardianship, advocacy strategies to pass on to kids, and much more. The list is full of important things to address. Because your child’s eighteenth birthday is not yet imminent, they may be ignored.

You know what I’m talking about, right?

I’d like to give you a hand in determining where to start as your child with special needs nears adulthood. So today I’m sharing three–count ‘em–just three ideas. Whether your child is five or fifteen or somewhere in between, completing these three steps can help you jumpstart the process.

#1: Obtain Hard Copies of Your Child’s Medical Records

Electronic medical records are a great invention. They can also be very hard to access when hospitals and clinics update their computer systems. Who knows what will be in place when your child reaches adulthood? Therefore, it’s wise to obtain paper copies by contacting the practices of the doctors and therapists who treat your child. They can tell you how their process works and what costs may be involved. Most likely, you will be sent an electronic file to download and print out. If your child’s medical history is complex and ongoing, you may want to request records every year or two to update your paper files.

 #2: Write Down Your Memories of Your Child’s Medical History

Write down your child's medical history. You probably remember what treatments (for physical, mental, and emotional ailments) your child received, but your child might not. Our son has no explicit memories of the tests, treatments, and 7 surgeries he went through before he was 5. So when he was a young adult, I wrote a narrative that included the hospitals where the surgeries took place, the doctors and surgeons who treated him, and anything else I could remember. Your memories can fill in the gaps in your child’s medical records and shows that your child is a person, not a patient.

 #3: Share Your Child’s Medical History with a Trusted Person

Make two copies of your child’s medical records and history when you print them out. Slip one set in a manilla folder, label it clearly, and file it with your important papers. Package up the other set and give it to a trusted family member or friend. Choose someone who cares deeply about your child (include your child in the selection if at all possible) and will remain involved in your child’s life should something happen to you. Invite that person over for coffee and review the records and history with that person. Meet every few years for to update the paperwork and go over everything again.

Completing these three steps will ease your anxiety as your child nears adulthood. They may also help you build momentum to address other issues related to that important life change, so the transition is as joyful and smooth as possible.

 Written by Jolene Philo

Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She recently co-authored Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities with Dr. Gary Chapman. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.

A PARENT'S GREATEST FEAR

I recently had someone message me and share some concerns they were having regarding their adult child who is in college. This person was really concerned about how the child’s struggles would impact completing college and their future ability to work. They closed by asking what I worry about for our son, Jordan, and if I had any concerns. At the heart of this question was, am I worried about my son’s future?

The short answer is, “Yes.” In the midst of being so excited and happy for the amazing progress he has made, it is easy for me to worry about my son’s future and wonder how his social/emotional struggles will impact it. It is easy for me to get caught up in the game of wondering. Wondering if he will be able to find a career he thrives at and enjoys? Wondering if he will get married? This wondering game can go on and on. If I don’t end it, I always come out the loser.

The future… How can two ambiguous words be so scary. These two words will strike fear in the heart of the most stout parent of a child with additional needs. I have had the opportunity to talk to many the parent who will refuse to even think about the future. Some parents offer a confident answer by sharing that one of the child’s siblings will take care of the child if something were to happen but many more just look back at me blankly because they don’t know.

The truth is none of us knows the future. I know what Jordan’s struggles are and am able to come alongside him and try to help him grow. He may always struggle with certain things but hopefully he will be more equipped to handle those struggles. That’s what we do. We take it day by day. We research and look for additional resources. We talk to other parents about what they are doing and we pray, because that is ultimately the only place where hope can be found.

We take comfort in Job 42:2, where Job acknowledges that no purpose of God can be thwarted. Why does this bring us comfort? It allows us to praise our heavenly Father because our son is fearfully and wonderfully made and when He knit Jordan together in his mother’s womb, He had a plan for him even at that time... That plan will not be thwarted. We look forward to that day spoken of in Revelation 21:4. That day when there will be no more pain, no more tears and our children will no longer have their additional struggles.

Are you the parent of a child with additional needs? We want to hear from you! What is your biggest fear about the future and what helps you overcome those fears?