Sunday, February 10, 2013

When Age Is Just a Number

When age is just a number.

One of the biggest frustrations with transition with my children with special needs is the age thing. 18 the magic number between childhood and adulthood and for some of my children they were not ready for the responsibility associated with that right of passage.

With my young adult children with Fetal Alcohol Spectrum Disorders and even my daughter with Noonan Syndrome one of the hallmarks written on every description of what the syndromes entail is that they have scattered skills and they have delays in maturity and often function at an age much lower than their chronological age.  So why do they expect them to be ready for all the rights and responsibilities of being an adult when they can't at 18 or for some of them ever?

The school hands them at their IEP the On Rights and Responsibilities booklet outlining their upcoming independence just before their l8th birthday.  The medical field and psychiatrists, schools, support services all expect them to be able to navigate a complex system of paperwork, funds, appointments and schools choices themselves.

As a parent up until l8, sometimes I had trouble figuring it out myself, so how can we expect these young people to do it who have hidden brain damage, hidden learning differences, sensory issues, social issues and add in the immaturity issues.  Who would think someone functioning at age 8,10, 12 or 14 who has no concept of time, or money or planning skills can do it?

Then add, that the schools, the counselors all expect our children to go to college. So our kids next step is to be like everyone else and head to college. they do not want to be left behind. I have a hard time with our societies expectation that everyone needs to go to college. Some need hands on training programs, or a technical school to do well. But that is a lesser choice according to our society at this time.

Of all my adult kids with disabilities the one who we thought could handle it, couldn't, thousands of dollars wasted in a learning experiment leaving him fighting frustration and depression. For some of the others, college is one or two classes at a time taken much later when their maturity and their developmental age was ready, not their chronological age.

Would you send your 12 to 14 year old to college and expect them to understand the complex world of financial aid, do the college coursework and have the wisdom to stay away from all the temptations of having too much fun?

 For the highest functioning of my and my friends young adult kids with FASD's, they are the ones who struggle with expectations the most.  They have the smarts to get into a college, they have the SAT and ACT scores to prove it, but yet they have executive function deficits and under stress their ability to handle things they can handle normally become literally impossible. Remember these are young person with hidden brain damage which struggles with money concepts and planning ahead skills despite their normal IQs and often never a day of special education.

For some, home with a life of simplicity is what they aspire to through the early years of transition. What is wrong with that?  Enabling sometimes I am accused of. No they just are not ready yet. They are learning in their own way the life of interdependence that will keep them safe, keep them supported and let them develop in their own time. Not pushed by the time clock of age into circumstances that they cannot be successful in. For my girls at home, they may need assistance for the rest of their lives.

Many of my friends think guardianship is the magic tool, but that means we are labeling our loved ones as not competent.  Something to not be taken lightly. There is a fine line and courts do not give it easily.  For some it is the right thing, for others, I learned tools to use to navigate without having to go to such extremes.

 For the others, they think they are competent, and really do not understand what they don't understand.  That is scary for a parent, and frustrating when life comes back to bite them, calling while disregulated or in crisis of another blip of lack of planning, lack of judgment, and something for Mom to fix. But I do not fix it. It is my job to help guide them through the learning lesson that is so painful to watch.

Life is never dull and some of the predicaments they find themselves no long shock me. I just take a deep breath or two and roll my eyes and just remember that the adult child on the phone may look normal, but they have hidden brain damage and I can't be just another one of those people who expect them to be able to do it on their own when they can't.  A life of interdependence, an external brain when they can't count on their own.

The thing that makes me the most angry is when you try to explain to someone, professional or not the reply.
"That is just teens or young adults ". It is just teens or young adults compounded by hidden brain differences with expectations they should be able to do something or understand something and their is a faulty circuit or immaturity that is part of their disability.

I do not enable my adult children, I support, connect the dots and my response for each one carefully geared to fit their understanding and brain difference.  But the biggest lesson for me, is that I have to let them walk their own walkabouts, slower preferably than others, or later than others, but no matter what an opportunity where they have to learn to come to term with their own abilities and disabilities.

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