MOMents - Walk in Another Parent's Shoes

Some parents have a different journey


When my children were born prematurely, I liked to hang around with other parents of preemies. I had almost no choice. My days were spent in a neonatal ICU that sheltered me from the harsher judgment of the rest of the world.

In the neonatal ICU, another parent was bound to understand that “breathing room air” was an actual milestone not something to be taken for granted. Preemie parents are not the ones bragging about a child outgrowing a three-month onesie the first week. We are the ones waiting for our children to grow into it.

One day, I watched in horror as the father of a child who had been born without the ability to properly move her limbs peered into the isolette and thought his child had been cured overnight. He called his wife over, but suddenly realized he was looking at the wrong baby. Then, he broke down, his whole body wracked with the enormity of the situation.

In that moment of raw grief, I watched this father’s unrealistic dream – that he would wake up and his child would be fine – come crashing down around him in the reality that he would need to fasten his belt for the long haul. There were no dry eyes in the room from the other parents or the medical staff.

When one of my children came home with an oxygen tank, I was immediately plunged into the world of other people asking nosy questions.

At the time, I wondered if this is what being the parent of a handicapped or special needs child is like. To be honest, I did not yet know if that would be my fate. It certainly was the fate of many of the parents we bonded with in those first confusing days of parenting.

I am thankful on a daily basis that my tiny infants developed as they should, but I am ever cognizant of those that do not.

This sort of information does not announce itself to parents immediately. The father who bent over the isolette that day in tears did not know what he was up against. He did not know what to do for his child. He still may not.

Developmental delays unfold in the slow and gradual ways a child fails to babble or lift his head correctly. It announces itself when a child cannot potty train on time or learn to read like his peers. Even so, those are just red flags for more investigation. It takes years to understand, even for parents. There are always mysteries.

Friends and family may never understand. A special needs child once bit one of my sons in class. The situation was handled appropriately at school and I was notified. The end, I thought.

But other parents pressed me. What will you do about it, they asked? Do you think our children are safe with this child?

Maybe they wanted me to try to use the situation to get this child out of the mainstream, but I would not do it. Any of us could be walking in that parent’s shoes. And, those shoes are not easy to walk in.

Those are the shoes of people who lie awake at night not knowing where their child should attend school. They do not know if their child will be able to maintain friendships. They do not want their child to embarrass his siblings with inappropriate outbursts at games and ceremonies, but it is hard to find someone to stay home with him.

A friend whose child had profound disabilities once confided that an institutional setting might be best for her child, but she was afraid to put him there because he was “so hard to love.”

As they get older, it gets harder. Where will this child live, work? And the scariest yet, what happens to my child when I am gone?

Parents pin their hopes on therapies, early childhood classes and aggressive interventions. Some help, but others do not.  There are many false starts and dashed hopes. They are also bright spots and wonderful breakthroughs. There are things we can all learn from the struggle of a child.

One thing we should learn is to be patient. No child or parent chooses this. Please be kind.


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Marion King September 16, 2012 at 04:26 PM
Thank you for this piece. The proliferation of feel-good stories is so hard to bear when our children are struggling, and we are struggling along with them. One thing I might add is the struggle we face that might be unfamiliar to parents (and others) who do not have children with challenges. You know how some health insurance companies send denial letters out purely in the effort to "save" money? (All health insurance companies?) Well, parents of kids who need services in school face that denial letter world every single day. Just like there are some patients who think that the denial letter is the end of the options, some parents accept "no" from school districts as the final word. Or worse, never get a second opinion and think that the stripped down model of services they are offered is all that their child will need to succeed. continued...
Marion King September 16, 2012 at 04:28 PM
For those of us who know that we must get independent evaluations for our children, the school district's "no" hits us in the face every day. The system is not designed to ensure that our children get what they need. It is truly designed to pit parents against school administrators who must account to the school committee for their every expenditure. School districts cry poor while they hire substitute special education directors for $160 per hour! This is the case in Somerset. Annualized, this person will earn more in her part time temporary position than my town's permanent, full time director. Patricia Cosgrove resigned from her position as Director of Special Education in Mansfield shortly after a protest by the group SPEDWatch. Her reputation among parents there was that she lacked the ability to be fair or respectful. Now she will direct Somerset's staff with her hyperfocus on saving a buck at the expense of the very neediest of the children in the district. One more burden on families who already, at times, live on the emotional brink. Marion King, Foxboro www.SPEDWatch.org
Stacey Sweet September 16, 2012 at 08:15 PM
Thank you for sharing this. I would love to see this published in a national newspaper. I am the parent of a child with developmental delays and a life-threatening illness. I feel isolated, alone, and often misunderstood. So does my wonderful daughter.
Jorge Teixeira September 16, 2012 at 09:56 PM
Thank you Marion for sharing the reality of lot's of parent's with special needs children. Chairperson: Jorge Teixeira Connect with us! Voicemail: 978-212-9651 Website: http://www.hudsonsepac.com Facebook page: http://www.facebook.com/hsepac.parentadvisorycouncil Twitter: https://twitter.com/#!/hsepac www.SpedWatch.org Click on link below to join http://www.spedwatch.org/membership.php Visit us on facebook
Marion King September 16, 2012 at 10:08 PM
Stacey, You absolutely are not alone. Please join SPEDWatch. Marion www.SPEDWatch.org


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