The reality is that we as parents have a natural tendency to worry about our child’s future, especially when dealing with a rare disorder. Will my child go to college? Will they be able to work independently? Why am I so scared? How do I help them? What is the right path?
As parents, we often beat ourselves up with questions about the future and all we really want is for our child to end up doing something that is purposeful and fulfilling. We all want our children to be happy.
Recently, after watching the Cowboys squeak out a victory in the NFL playoffs, my son Dante (age 10, Prader-Willi Syndrome) and I had our first deep discussion about his future. He asked me what happens after high school. I told him that depending on what you want to do, there are different options. He said, “What do I have to do if I want to be a teacher or a doctor?” I responded, “You must go to college or university.” I also told him that some people go straight to work after high school but what’s important is that he is doing something that he loves. He paused and said, “Where do I have to go if I want to become an NFL coach?” I said, “I’m not sure, that’s a good question.” He said, “Maybe we should look it up because that’s what I want to be.”
It turned out to be a powerful conversation that led to setting goals about increasing independence and improving literacy and numeracy skills. But with an end in mind and a goal that is purposeful, I know Dante will end up doing something that he loves and those SMART goals (How to set SMART goals?) on his IEP are within reach. Now we just have to find the right learning pathway to get there and middle school is a good time to start thinking about what that pathway looks like. A Learning Pathway refers to specific courses, academic programs and learning experiences that students complete as they progress in their education toward pursuing their dreams post-secondary.
So now what?
You can begin by setting up team meetings to discuss what those pathway options are. As a special education teacher, I always knew what those options were but as a parent they seemed overwhelming and uncertain. It’s important to start with the end in mind and aim high. The most important factor to consider is what your child likes, what they are interested in and then you can build upon those strengths and interests.
Here are 5 pathways to consider for post-secondary options depending on the needs of your child and the severity of the rare disorder:
- Student needs competitive marks on a high school diploma and must self-identify (bring their IEP to special services offices to make college aware of accommodations).
- Apprenticeship Program
- Student will achieve a high school diploma through special programming. Student will gain job training and experience in a skilled trade while earning credits towards a high school diploma. Trades include: Chef, Carpentry, Child and Youth Care Worker, Hairstylist, Transportation, Technology and more.
- Upon completion of high school diploma or certificate (and including students who do not receive a diploma), student will enter into workforce at base level.
- School should work with student to introduce them to co-op opportunities.
- Supervised Employment/Assisted Living
- Volunteer opportunities within communities that may lead to paid employment depending on level of independence and student needs.
- Group Home
- Residential Home Care (24 hours), opportunities to volunteer in community. Programs within Group home will focus on learning life skills and self-care.
How do I get there?
If college/university is the end goal, you can work with your school team to set specific goals that will eventually lead to your chosen path. It may take longer than expected but it’s possible. Setting SMART goals, tracking data and making sure the IEP is being followed effectively will ensure goals are being met and therefore will ensure acceptance into college. Collect and keep track of all assessments and keep your expectations high.
If your child dreams of becoming a chef or doing a trade, it’s important that you meet with the guidance counsellor to plan the appropriate courses to take throughout high school in order to successfully earn a diploma and to ensure entrance into the apprenticeship program that will honor the child’s IEP. There are many programs in high school that are designed around the student’s interests and strengths which can lead to fulfillment in a career of their choice (such as cooperative education credits). Building self-advocacy skills would be extremely important in this pathway as well.
If your child goes straight to the workforce (with or without a diploma), then high school programming must focus on building employability skills (such as writing an effective resume and knowing what to do and what to ask for at an interview), improving social skills and increasing independence.
If your child can live some aspects of their life independently, there are programs that offer part-time employment and/or assisted living opportunities. Investigate opportunities to volunteer in your community and use local agencies to help your family find meaningful employment that offers assistance at work. Assisted living could mean that your child/adult only needs supervision for part of the day depending on their needs/rare disorder.
If your child is dependent on a group home setting, there are many things to consider and it’s important to start this process early due to extremely long wait lists. One important thing to remember is that not all group homes are created equal and it’s up to you to find the right one that suits your child’s needs emotionally and physically. Investigate your options early because availability is different from state to state, country to country. In elementary school there are special education classes that teach life skills to help students become as independent as they can to prepare for a group home environment.
Transition Planning Tips
No matter what pathway is right for you, here are some tips to help you along the way:
- It is never too early to start planning – start thinking about your plan in 4th grade; there are many things you can do to prepare for the changes ahead.
- Begin building self-reliance skills to encourage a move towards independence
- Your vision should be a long-term objective – one that is achieved in incremental steps by identifying activities to complete on a year-by-year basis. Most importantly, this vision should be done with the active involvement of your child.
- Establish a vision for your family (future plans need to be considered and factored into the development of the plan for your child).
- Be prepared to initiate things for yourself, it’s up to you to create your child’s future
- Calls to agencies and professionals that you may not have spoken to before can be intimidating at first but being organized and prepared before you call will make the task seem less daunting.
- Find creative, energetic and positive people that will surround you with the type of support you need as you enter this major time in your child’s life. (Speak to your child’s teacher to find a parent in your area or speak to an access agency. They will connect you to other parents or parent groups. If you do not find an appropriate group, then consider starting your own.)
- Do not wait for the education system to create a plan for you
- Do not wait for your service providers to create a plan for you
- Do not assume that the service system and will provide support when your child turns 21
These tips were taken from an excellent resource that I just posted on my Education and Advocacy Facebook Group called, “Connections.” Please join me and over 500 members as we discuss important issues in education: Education and Advocacy: Maximize Learning Potential. Your child is headed in the right direction and with your help, they will reach their maximum potential in the pathway that is right for them. Now I just need to figure out how Dante can become an NFL coach. Any ideas?
by Tanya Johnson