We Help People And Families Affected By Autism

Parent2Parent, by Jen Nardo

Every phase of our kids’ lives comes with its own set of worries and concerns. I remember when my boys were born that I worried about their eating, sleeping, and “diaper activities.” Those beginner worries moved on to sitting, crawling, walking, and electrical outlets. I realized I had two major jobs: “Love them, and keep them alive. Got it!”

As my sons grew, the worries changed again, this time to schools, buses, IEPs (individual education programs), baseball games, and homework. Frankie’s independence was ramping up as Jake’s special needs grew greater. Today, Frankie is in college, Jake just turned 18—and my head is spinning! How I long for the sippy cup–nap problems.

To meet Jake’s needs, I paid attention to all the transition information, reading each memo and asking questions at IEPs. For many school years, I was able to let Jake’s teams lead the way. They knew what appropriate goals were next and how to make these goals happen. My input was needed and welcomed, but I relied on their expertise.

As the high school years began, I felt the reins being slowly handed over to me. Now, it’s my job to research Jake’s options for after his graduation. Provider fairs, site visits, and asking other parents are some ways I gather this information.

One of the decisions we made as a family was applying for guardianship of Jake. As an 18 year old, he can legally make his own health-care and financial decisions; however, we know that Jake does not have the understanding to make good choices, so we are being appointed as his legal guardians. To this end, a series of forms needs to be filled out and notarized, and his doctor must do the same.

As his legal guardians, we must account for his finances to the court every year. If I let this process get to me, it can be another glaring reminder of Jake’s special needs, but I am trying not to read too much into it: “Just more forms to fill out. That’s all!”

The next big step to tackle is Jake’s Social Security. Again, I attended some meetings, asked lots of questions, and now know that I can apply online on Jake’s behalf. I also know that the application requires a lot of time and a lot of documents. To be perfectly honest, I have put off the process because I built it up in my mind as insurmountable. But now, it’s time to get the hiking boots on, and climb this mountain!

The biggest worry I have is for Jake’s long-term care. Where will Jake live? Will his caretakers ever know him like his family does? Will they ever be able to meet all his needs and calm the meltdowns like his family can? Will caretakers love him and treat him like family? My tears start flowing when I really let myself imagine what life will be like when Jake is in a group home and not living at home anymore.

Through the years, my husband and I pointed out to our sons that they are and always will be brothers. We raised Frankie to know that we don’t expect Jake to live with him full time, but if Frankie chooses to do so, it will be big brother’s decision alone—No influence from us! Whatever Frankie’s decision, he must always maintain family tradition. Dinners, vacations, movies, and the like are all required with his brother.

This summer, Jake will attend camp at Easter Seals Camp Fairlee. The time apart from his family will be good experience for us both as we move through these new, uncharted waters of Jake’s adulthood. Also, I have a list of books to read about adulthood on the spectrum, and a lot of decisions need to be made. My plan is to keep my own anxiety in check by taking each step as it needs to be taken.

Good luck to all of you going through the same phase I am!

Sun contributor Jen Nardo is a long-time parent-mentor, autism advocate, and newsletter committee member as well as the parent of two sons, one with autism spectrum disorder (ASD).

This text was edited for consistency of language and message and appears in the October–December 2016 issue of the Autism Delaware™ quarterly newsletter, The Sun.

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