*DISCLAIMER transition does not mean death in this instance or sexual identity*
I am always getting questions about Jay. I think considering his severity of special needs, people are interested to know how we handle life with Jay, and simply how we balance it all.
It's tough, I will not lie. There are so many sacrifices and accommodations made that sometimes it can feel overwhelming. However, we work together, and we make things happen to the BEST of our ability. I know from social media, it appears to be easy, but we have entered the period of TRANSITION. It's a tough phase.
Transition is a term that simply means entering the next phase of life at 18 and beyond.
Our High School does a great job at preparing parents for this period, however, because we understand this means mega changes, most parents seemingly compartmentalize the topic until 11:59pm just before their kid turns 18 years old. Why? Because change is hard.
We would like to think our child will remain with us all of their days (or our days), but sometimes that is not always what is best for them, so the transition period is often a tough time for parents because it means making pretty tough decisions.
When a special needs child turns 18, a lot of things change and decisions must be made that will carry them well into adulthood including, once the parents are no longer living. These are decisions that are tough but need to be made and implemented.
If you have a special needs child, here are some of the things I HIGHLY recommend you begin having conversations about with your family regarding your special needs child, sooner rather than later.
1. Who will assume the responsibilities and care for the child in the event the parents are no longer around or able to. This is a really tough one. Immediately we think the person (or people) should be our parents, right? But consider the child’s special needs, the health of your parents and if it is realistic for your parents to have the capacity to care for your child. Additionally, begin to have these conversations with people that are close to you who you may consider. Let them know you are considering them as the individual who will assume all responsibilities and ask how that makes them feel and if they are open to it.
2. What will be the financial undertaking for your child and who will control his/her finances. Although, the parents may be married, there should only be one person who will assume the roles and responsibilities for controlling the finances of the child and it SHOULD be the parent who is most fiscally responsible and have the aptitude to utilize the money responsibly. This does not mean you can't work collaboratively because you should! But If you cannot agree on whom that individual will be, hiring an outside party would be the next best option.
3. Where will the child assume residency upon graduating from high school. While most schools have transition programs for students to attend until 21, depending on the needs of your child, the program may be one you don’t feel would benefit the future needs of your child. This is when you decide if your child would attend a “Day program” where the participants are gone during the day and returns home in the evening or a program where the child will live in a facility dedicated to the needs of your child, alongside other residents who have special needs as well. Most parents select the transition program in the beginning until they feel another avenue needs to be explored.
4. What will be the new hospital (if applicable) or physicians that will be attending to your child from 18 and on. When the child reaches 18 they will no longer be considered pediatric, so finding a new set of doctors you trust is a big deal. Most often, pediatricians will refer you to a new PCP (primary care physician) , however, there is nothing wrong with looking into it yourself. Keep in mind, this also means dentists as well. Currently, Jay goes to a pediatric dentist, as most children. You will need to consider the next dental office that has the abilities to accommodate the needs of your child.
These are just a few of the changes we have on our plate, no different from any other special needs parent. Having a special needs child is definitely not easy. There are so many things happening behind the scenes that we are challenged with, nevertheless, we make it work, and we always figure out a way.
Also remember, special needs come in many different flavors! It is not a one size fits all scenario.
If you are a special needs parent, I see you and keep the faith!