Independence Day... Independence for my children with disabilities is not the independence that other children will achieve. 

Eighteen shouts to them as the magic number. You are now an adult, with all the rights, privileges and responsibilities of an adult.  But for my children, it is a number where society EXPECTS them to be able to manage their money, their schooling, and be a productive members of society.  I have already done eighteen with two of my adopted children. A third just hit eighteen, and soon I will be graduating two more.  My youngest two with the most challenges will fall into a no mans land  where they will be expected to be ready just like their non-disabled peers but without the supports they need to succeed.  Many of the mandated supports are no longer an entitlement

Becca our Tiny Titan who was not supposed to live to be one-year-old will be l8 next month.  She is making gains and defying all the odds, but she is not yet ready to be launched into adulthood.  Her tiny body is really only thirteen, her social and development still only in her early teens.  But she is now an adult.  When she wants to be treated like an adult, who will believe her.  She is planning her l8 coming out with her siblings, the chance to buy her first lottery ticket, and they plan on taking her to the casino, but who in their right mind would believe her state issued ID? She is discrimated on based of her size.  She still gets you can't be in high school you are only eight or nine no one will ever believe she is eighteen or give her a chance.  Becca can handle many of her own affairs, her legalism from her autism helps keep her on track. But when she is stuck, and perseverates, someone needs to have the authority to be able to unstick her or manage her money so she doesn't end up buying a horse with no place for it to go.  She is mentally capable, but her physical health and fatigue will prevent her from working as the day to day roller coaster of her health concerns will prevent anyone from hiring her.  What will she do to feel empowered?

My son Delonzo will be judged, juried, convicted for his impulsiveness.  They fault him for his niavity when peers manipulate him into all sorts of trouble.  He is the one who will do anything for a friend.  The police recently told him that the forged checks from mom and dad would brand him a felon and the stolen pill bottles that his friends asked him to take from home would cost him his freedom and a permanent felony record and all chances for funding for his disability and schooling. They told me if I didn't drop the charges he would be charged as an adult and branded.  He is now an adult in the systems eyes, but unable to take care of himself without support.  At home he does well in controlled structured and a positive environment.  He takes prompting to be successful.  I have been told by professionals that kids like him find their structure in the justice system.  I am not willing to settle for incarceration when my son has come so far.

We have spent our time raising and empowering our children to succeed, but society is not ready for the transition to adulthood.  We spend hundreds of thousands of dollars for Becca to survive, but are not prepared for an adulthood of much more than sitting.  The supports for her medical care are few and I recently learned that the health care system has only a hundred doctors in the nation who are able to monitor adults who have congenital heart disease. Their heart repairs will wear out in their adult life, and regular cardiac doctors do not have the expertise to manage them.  Who will manage Becca's twelve differing rare and congenital specialities.

For young adults with Fetal Alcohol Spectrum Disorders we know they are developmentally and socially years behind.  They will need assistance for life.  Even with my high functioning Deangelo the jurys is out to see if his damaged executive funtion will interfere with his ability to succeed at Western Michigan University.  It is a big chance to take when the first year's tuition and board  is $30,000.  Will he remember to turn in his promissary notes and get the forms sent in ithe narrow window allowed. 

My children need someone to manage their money and make sure they have housing. They need support to make sure their housing is safe and they have food on the table.  Becca will need hands to help her when her shoes need to be put on, and someone to balance her as she struggles to get dressed each day.  My children have worked hard to gain functionality and the only supports that exist are for those who are much less functional than they. Through they're hard work they have jumped out of the existing services boxes.  Yet they have permanent brain injuries from their mothers drinking and drugging. They still carry scars from abuse and neglect.  Will they be left behind and  forgotten? Will they fall into depression when they can't get the help they need to stand proud of themselves.

I work each day on empowering my children to be interdependent. 

Interdependent is the term I use to explain to those who need to understand, that my children will never be fully independent.  My children need to understand their strengths and challenges and let people help them when they need it.  Many parents shelter their now adults to protect them. I cannot fault them for that, but I want more for my children.  I have to allow them to make their own mistakes by connecting the dots, trial and error, and have a wide safety net for them to be caught in.  Many times I can catch them when they and I have been been forewarned about the consequences. I will not rescue them, I become the advocate, brain coach, and supporter for them to lean on to walk through their tough walk.

Still, I worry about my young adults and their fragile self esteems.  There is no DSM for FASD's. There are no support services for a young person who has a normal IQ but can't use it due to brain damage. Who will pay for Delonzo's $l500 in medications because without them he can't keep himself out of trouble?  Who will hire a young man who wants a job, but needs a job coach to keep him on track?  Social security disability will help him obtain his medications, but what will he do to keep himself from boredom and trouble? How many years of appeals and gridlock will it take for him to qualify?  

How will Becca be supported? In Michigan her transition plan was to stay home with her family together....that is not her dream. The dream of a young woman who boldly traveled with me to speak and the National Foster Parent Conference in Washington DC. The young woman who joined Liz for lunch on their own in a DC suburb. Tachers and special education people said that is all there was for her to do. A sad state of affairs for someone who has come so far.

I have watched Shay and DJ flounder and find support after having to prove they need it by failure upon failure. I have watched homelessness and despair take it toll on DJ, my oldest adoptive son who I thought could make it. Its not that he won't, he can't without supports.   I had to fight hard and if not for a guardian angel's intervention, both would be homeless.  Shay and DJ have made the tough transition to adulthood. They have their own apartments and someone to help manage their money. They are surviving SSI check to SSI check, perhaps in the future a job opportunity? Perhaps.

My question this Fourth of July is when are we going to give our young people with disabilities the keys to Independence?  For young adults with disabilities independence is a right at eighteen, but we have a long way to go to give them a chance to have a meaningful and productive life.  My job as a Mom is far from done, I am just beginning the road with my next three to guide them through the maze of transition.