If you have a child with significant special needs graduating in 2017, people will congratulate you and wish you luck. They will send cards. Your graduate will be encouraged with all manner of exciting and inspirational things headed their way, like ‘new chapters’ and ‘open doors’.
But I’m your friend and I’m here to tell you about the cliff.
You are inevitably walking towards the edge of a chasm. When they hand your son or daughter that leather-bound folder, you take the step to the spot where the earth below your feet ceases to exist. I promise – honesty is the best policy.
Whatever it is that you have been believing in and using as your guideposts no longer exist. The rules, the laws, the people, places and programs have all vanished. When you wake up post-graduation day, there’s a brand new map and you better learn to use a compass.
So, here is my best advice, which is worth about exactly what you are paying for it.
First, please remember that you are on your own. No one is coming to save you. Whether you find that scary, liberating or shocking, it is true. If you don’t look for them, they are surely not looking for you. Don’t wait for someone to call you or set up a meeting, find a program, or offer you anything. The internet is your friend, your BFF, so put on your research cap and get to work.
Second, be flexible and prepared for sudden changes of direction. Be ready to rethink, replan, and regroup. Ethan’s exit IEP at school was productive and everyone seemed engaged and knowledgeable about how things were going to work. We all had ideas and plans and none of them worked out the way I initially thought they would. My strength is strength – like a brick wall or an an oak tree. So. Little. Give. My thoughts settle into ruts like fast moving streams and I have had very hard time changing direction – so we’ll work on that together, huh?
Next up – Read All Of The Things. I mean it. All of the laws and acronyms that applied to your newly-minted adult child’s life for the last 18 years of your life have changed. There is a new sheriff in town and her name is The State of New Jersey. True to form, there are lots of complicated programs, documents and rules. If you don’t read and understand the programs, it is like playing a board game and depending on your opponent to play fairly or even know all of the rules themselves! Please, get to know the system you are working in. I have AN AWESOME SUPPORT COORDINATOR. She is smart, effective, and has tons of experience. Together, we still struggle to make certain things work.
Here is another imperative skill:
firm or obstinate continuance in a course of action in spite of difficulty or opposition
Be it. Know it. Tattoo it on your forehead. It took us 4 months of daily struggle to make Access Link work for Ethan. It took us 13 months to get any services from the Division of Vocational Rehabilitation. It took several months to find and get into a day program. Damn it, Dr. Suess is always right. But don’t give up and don’t give in and don’t take ‘no’ for an answer. Ever.
Talk, talk, talk to other parents! Find out what their kids are doing, what programs they go to, how they found work, transportation or a great personal trainer. I don’t hesitate to ask for names and phone numbers when I neighbor says that they know someone who has a daughter with a great job or a son who is participating in an exciting and innovative adult program. I shamelessly ask for information. I call and visit ANY program someone mentions, even in the most casual of circumstance.
I did not appreciate the question – “So what will Ethan do after graduation?” – as if we had all of these interesting and appealing options available for only our choosing! Although graduation came with it’s share of pride and triumph, it came with a hearty serving of doubt and fear.
So, off the cliff you go. You have me to thank when the free fall does not surprise you and catch you unaware. You will be able to keep your wits about you and you can even start planning mid-air. Use the above suggestions as a blueprint.
You can begin to build a net or a staircase or a bungee cord….