Tuesday, September 28, 2010

Long Grief, Longer Hope

Having a child with any special need immediately sets parents apart, whether they want to be or not.  Nobody in their right mind would choose to inflict such difficulties on their own child, when even mild differences can have big repercussions for their entire life.  Whether the child is born with an obvious difference and need, or if the need slowly becomes manifest during the child's young life, or is the result of an accident or illness at any age, a diagnosis of disability or difference immediately changes EVERYTHING in the parents' lives.  Many marriages don't survive this shakedown.  Something we've had to face with our son's Asperger's is the grieving of what "might have been" or "should have been" (as if we were entitled to a child with no special needs).  Sometimes this is easier to face than others.

As our son has reentered the public school system, the differences we've seen between him and his average classmates have been both more and less than we expected.  He is more delayed in writing and math than we realized - that difficulty crept up on us over the past couple years, and was one major factor in our decision to seek the help of the public school.  Yet, our son is a typical sixth grader, too - a boy to his core, loving anything with wheels and sound effects, video games and computers, jokes about bodily functions and thinking girls are weird.  He has more social skills than many kids (heck, more than some adults) with AS.  The similarities are reassuring, when we don't know what the future holds for him.

We don't know yet how independent he'll be as an adult.  Obviously we hope for the best:  his own job, his own living arrangements, his own vehicle, his own friendships, and even romance.  But the truth is that he may need our help for much longer than the average young man.  He may not be ready to leave home for college at 18 - living at home and attending community college is the most likely first step for him.  He may need help finding and holding a job.   He may need help maintaining an apartment and some form of independence.   He's likely to make mistakes along the way, just like any other young man finding his place in the world.  I don't know where his road will lead him, but we're likely to be involved for longer than we anticipate if his needs prove to be a barrier to his independence.  That's a struggle to contemplate, because that delays our independence from him.  (Does that sound selfish?  It's not meant to be - but the natural order of things is that children grow up and move on, and so do their parents.  If the child doesn't "grow up," when can the parents "move on"?)

Our son's AS needs are comparatively mild.  Many parents of children on the autism spectrum already know that their child will always need assistance of some sort, from them and/or from professional agencies.  I hope by the time our son is ready to be an adult that we will know how much help he'll need, and of course I hope and pray for his full independence.  I find it scary to feel trapped in the limbo of not knowing how self-sufficient he'll be, and I'm sure it affects my husband as well.  I'm trying to anticipate the future but not dwell on it, since it hasn't come yet, and many things will change before our son graduates from high school.  He's already making up lost ground in school, and I hope by the end of this year we'll be rejoicing with him in his achievements.

Back to the grief:  raising a child with special needs requires letting go of what "should have been," and embracing "what is."  Holding on to the unattainable, unrealistic, totally impossible "I wish it wasn't this way" mindset would deprive us of enjoying our son's achievements, and his uniqueness.  Trust me, he already knows he's different.  He's known for years, and usually it doesn't seem to bother him.  Yesterday, though, he asked me why he was in a class with kids who need behavior plans, why his morning class is different - the other homerooms and language arts/math rooms don't have that chart on the wall, and a list consequences.  That made me so sad, that he feels segregated, yet it also gave me the chance to tell him that some of the kids in his class need that extra help with their behavior, just as he gets extra help for his math and writing.  We need to show mercy to each other for our differences.  Of course I wish he weren't having these difficulties.  I wish he didn't need an IEP at school, or special help with math, or social skills classes with the school counselor, or extra understanding and help in Boy Scouts.  I wish he would stay on task better, keep his temper more consistently, fight with his sister less, and not get on his father's nerves when he lallygags and fritters away his time.  But he is who he is, and I love him just the way he is even while I help him to make positive changes for his own good.  I hope he knows that.