Milestones and Mothering

Terry Matlen, ACSW Health Guide
  • In exactly seven days from today, my youngest daughter will be turning 21 years of age. For most families, this is a milestone to be celebrated. Most 21 year olds celebrate this momentous day in their lives by partying with friends, maybe even living on the edge a bit by drinking a bit too much, driving a bit too fast, spending  too much money at the shopping mall or casino, or taking a fun-filled weekend in a fast, hip city.

     

    It's milestones like these, however, that typically make me sad. For my daughter, Mackenzie, will be spending her 21st birthday eating her favorite meal at her favorite restaurant with family, most likely with her earphones on because the din of the room will overwhelm her. There's a good chance that she'll leave the table more than once- more than five times- because even at her age, she's unable to sit still for long. She'll probably insist on wearing her winter coat during her meal, because her sensory needs dictate. A warm coat makes her feel calm and safe.

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    She will leave with food stains all over her best outfit and upon returning home, will play with her new Steve Irwin action doll, then when her meds kick in, will finally retire to her bedroom, cradling her baby doll while singing Hannah Montana songs to her.

    I'll stare at my beautiful blond haired, blue eyed daughter, who has struggled not only with severe ADHD her whole life, but who has also been challenged by her mild cognitive impairment, expressive speech difficulties, mood swings and more. A vaccine induced brain injury during her toddlerhood, robbed her of a normal life, a regular education and more than likely, a decent job.

     

    I'll find myself wondering how she'll fare in life as she gets older. How will she manage once I'm gone? Where will she live? Who will remind her to brush her teeth? Will she marry? Who will look after her?

     

    To see her from afar, no one would imagine that she has disabilities. But engage her in a conversation, and it immediately becomes quite clear. Her severe ADHD means she won't talk with you for very long; she can't stop her body or mind from sticking in one place for more than a few minutes. Unless, of course, you're willing to play a mean game of Sorry, in which case, she might be able to sit for a 10 minute stretch before racing around the house for this and that. You'll notice that she doesn't talk like other 21 year olds. She isn't interested in the latest fashion or what movie she'll be seeing with her friends this weekend. She won't be primping in front of the mirror or studying for a biochem exam. Yet she WILL screech in laughter at her favorite knock-knock jokes and try to explain why SpongeBob is the best TV show "ever."

     

    It's times like these that I think about lost dreams we parents with "special kids" experience, especially during major life milestones, like the first day of Kindergarten. Or at high school graduation.  Our hearts bleed for our kids - and for us- when the Valentine's Day cards never come; when they aren't chosen to play on sports teams and when the phone isn't ringing with birthday party invitations from school friends.

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    It's the pang our hearts feel when hearing our friends and families' success stories- how their child has been accepted to college, gotten engaged, had their first child. Sure, we are happy for them, but we're also sad for ourselves and our special kids. This is normal and nothing to be ashamed of.

     

    If you're the parent of a child with ADHD or other special needs, you know the feeling all too well. Still, we have a choice: we can either bask in self-pity, or acknowledge our sadness and loss of the "perfect child" (whatever that is), and celebrate our child's uniqueness.

     

    In seven days, I'll watch Mackenzie blow out her candles, think back of the last 21 years of the difficulties in raising such a challenging child, but will also remind myself that this experience has made my life- and those who love her- richer than one can possibly imagine.

     

    Recently, the nanny who traveled with us on annual family vacations when Mackenzie was young visited us.  (We needed two adults supervising her at all times so that her impulsivity wouldn't kill her- this is not a joke). We hadn't seen Susan in years and it was a delight to reminisce about the crazy days she had, helping me manage Mackenzie on these "vacations." Now in her late 30s, Susan turned to me and said, "You know, Mackenzie changed my life. I'm drawn to children with special challenges- I know they need a caring ear and open heart and being around her has made me a better person."

     

    It's comments like Susan's that reminds me that Mackenzie is special in other ways. She taught me to be more patient, caring and to reach out to others who need help and support. She taught me to celebrate the small things in life. She taught me to fight like a tiger; not just for her educational needs, but for those of other children who have not received what is legally theirs in this very lopsided special education system.

     

    When Mackenzie goes to bed as a 21 year old, she won't have stories to tell about dancing at the local club or watching the sun come up while partying at a friend's house. She'll say, "Mom, I love you forever and ever."

     

    And what more could a mother ask for?

Published On: January 26, 2009