Parenting an Adult with Special Needs

My son was born 18 years ago, sweet and cuddly, but already with a host of medical concerns.  Noah was born via c-section due to a congenital heart defect. They rushed him off to the Neonatal Intensive Care Unit (NICU) due to the fact that he had one collapsed lung, and wasn’t doing so well.  The next few days worth of tests came to show that he had only one kidney, and a heart defect known as tetralogy of fallot. As the years went by other tests showed that Noah had 22q11 deletion, needed glasses, had a submucous cleft palate causing speech delays, was developmentally delayed, and on the autism spectrum.  What began 18 years ago will not end just because he is a legal adult. If anything we are beginning a whole new chapter of struggles for him, and for me.

As most young people grow, they face finals, driver’s license tests, and moving out into their own home or dorm.  Others may be facing applying for SSI, transitions services, and possibly legal guardianship. What about signing up for the selective service?  For sure, he won’t be having to do that, will he? With all my heart I know that my son is not ready to live on his own. He still has difficulty with telling time, and counting money.

With that being said, Noah is a wonderful young man that makes me proud.  He studies, and reads the Bible because it is his passion. He is social with adults, and teens on the same level, and love interacting with other people.  Noah chooses to walk to the local community center, and volunteers at the food bank there three days a week because he wants to. With these wonderful attributes, I am not concerned so much that he has a place in the world, but that he will find the place that he desires in this world.

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Noah wants to move out some day, get married, and have children.  These are all things that may or may not be possible for him, so it puts me in a place where I am not so sure what to prepare him for.  Is he ready to pay his own bills? Not even close. Can he stand up for himself if someone calls him an idiot? I am not sure. Will he know what to do if a police officer tells him to stay on the ground.  I pray to God so! What about marriage, and children? Let us see if he can even care for himself first. Sadly, he still needs reminded on how to use the stove, and has to have help to cook a meal for himself that is not a sandwich, or cereal.   

I know that though he is a legal adult, he is not ready, but he so much wants to be.  So let us drill him on the amounts of money, and how to keep track of time.  We will remind him what to do if there is a police officer telling what to do: not argue back, but to listen, and wait for a chance to explain. It breaks my heart how much the boy with a man’s body wants to be an adult, wants to be thought of as “normal”, and yet is a child still in so many ways.  So though he has come so far, he still has so far yet to go.

Parenting the new “adult” checklist:
Apply for SSI
Get transition service set up
Teach even more about money management
Teach even  more life skills
Selective Services
Love them for who they are, and help them to become who they want to be.

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