I have two children, boys ages 12 and 8, both with special needs. They were diagnosed in the fall of 1999.  Now, four years later, I’m living what I call a “new normal.”  The losses came in bits and pieces as their various disabilities have revealed themselves.  It began when my younger son, as an infant, wouldn’t look at me.  No one else seemed to think that this was unusual – including his pediatrician.  Everyone consoled me and told me that he’d grow out of it. As a second grade student, he still cannot draw a stick figure, or write his name.  No one knows what he “really” has, but they say he has global developmental delays.  He’s eight and seems more like five or six or younger.

My older son has Asperger Syndrome.  A.S. is more known yet it doesn’t make things any easier.  He has a stellar IQ and not so much social ability, flexibility of mind, or organizational skills.  He struggles with anxiety and depression.  Both boys are in special education programs that work well for them, most of the time.

People say to me that they couldn’t handle having two children with special needs.  I tell them they would handle it because they wouldn’t have any choice.  You deal with it because you have to. There is nothing like raising children with special needs to clue you into “process, not product.”  Everything is process because you cannot use the same yardstick to measure success that you use with a typical child.  Every gain is a cause for a celebration.  Sometimes those celebrations are few and far between; so do rejoice when you can.  I used to think that I wasn’t a very good mom, and yet so many people would say, “You are such a good mom to your kids.”  I was looking at my boys and seeing how non- typical they are and feeling like I had failed. Now, I look at my efforts as part of “being a good mom”.   It’s the effort not the outcome that makes a good mom.  This is part of the new normal.

Living in the new normal involves becoming skilled at dealing with chronic grief.  I have a nephew, born three days before my younger son.  This child was writing his name just before he turned three.   It was at my house; I still have the paper.  My nephew is still a gifted child.  My child, five years later, is just now beginning to control his hands enough to write his name.  When I see kids my son’s age doing something that kids that age do, something he cannot, and may never do, I feel a deep sadness.  I know I’m not supposed to compare my son to typical kids. When I do, I feel fresh, or chronic, grief. Each time this happens, I notice I’m getting better at regaining my balance. Support helps.  Talking to others who can relate, reading books, going to conferences, all these help me find my emotional bearings. Susan Jeffers who wrote, Feel the Fear and Do It Anyway, says:  “Every time you encounter something that forces you to “handle it,” your self-esteem is raised considerably.  You learn to trust that you will survive, no matter what happens.  And in this way our fears are diminished immeasurably.”   Growth through grief is difficult, necessary and part of the new normal. 

As a parent of a child with a disability, fear is well known to me.  What will happen to my kids in the future?   A dear friend and parent of children with needs told me something profound:  parents of typical kids don’t know what will happen with their kids in the future either.  The future is not known to any of us.  Worry doesn’t solve problems, action does.  I feel considerably less worried and fearful when I am doing something than when I am standing on the sidelines. In her book Jeffers reports that over 90% of what we worry about never happens.  This means that our worries have about a 10% chance of being correct. Doesn’t that mean that being positive is more realistic than being negative?  She adds:  “The important issue is not which is more realistic, but, rather, ‘Why be miserable when you can be happy?’  If being a Pollyanna creates a happier world for you and those around you, why hesitate for one more moment?”  While I agree with her, I must admit that this is difficult for me. Our family life, however, is much better when I’m in a positive place.  What’s that old saying?  “If momma ain’t happy; ain’t nobody happy.” It’s true.  To all parents:  You need to take care of you or you’re not good for anyone.  The new normal is not entirely made up of sacrifice. 

For a long time I looked for things that would “cure” my boys.  The problems would be solved, and I, we, could move on.  I’ve come to realize that they need care, not cures.  To care means to continually attend to needs.  From the outside it may look as if I’m not doing anything different.  This is a mental shift, from solving a problem, to accepting where “they’re at.”  This is a change for my boys too.  I know that they can feel the difference.   The new normal is ultimately about accepting the lot you are given as graciously as you can.  It is a process, which means that it is never entirely done.  There is no one right way to do it and it is unique to each individual.  I like to call this process the new normal.