Special Needs Parents: Isolation, Grief, Guilt, and Fear

All special needs parents suffer from grief. Whatever “Normal” is, it is no small thing to lose. The grief is not a linear process. Some days and some years it will be better, some will be worse. Expect to grieve. We all do.

Most live through denial that this cannot be happening to them. Then they experience anger sparked by the grief and the sense of loss of “what could have been”.  Anger is often followed by a profound sense of guilt.  It’s only in a parent’s nature to think, “Was it something I did?  What could I have done differently?” Yes, and even when doctors say you didn’t do anything to cause this, you still wonder. That voice doesn’t shut up sometimes. Working on the guilt is counter-productive… We do the best we know how until we learn better.

As you see your child struggle, you try not to imagine how things might be different for him but many days your insides shrivel up with fear of the future. Special needs parents fear the unknown… from the kindergarten playground, through middle school, teen years, and to adulthood.

For some overwhelmed parents professional counselling is needed to carry on. Seeking  help can be difficult, but it’s the best, healthiest way to survive hopeless or sad feelings! Bobbi Sheahan quotes in her book, What I Wish I’d Known About Raising a Child with Autism , “If Mama ain’t happy, ain’t nobody happy.” Therefore take care of yourself to help all the others depending on you.

How Can Special Needs Parents Feel Less Isolation?

• Sharing feelings of isolation, frustration, guilt, and inadequacy helps tremendously and I hope it helps others who are in same boat.
• Reading other blogs and comments helps you know your feelings aren’t unusual; it is your situation that is unusual.
• Really connecting with others on a similar journey can be a life line. Just knowing you aren’t alone helps.
• Actively looking for others who share a similar journey helps a great deal. Often you will learn a lot from each other.

What Special Needs Parents Can Do to Lighten the Load

• Get sufficient rest; eat as well as they can; take time for themselves; reach out to others for emotional support…
• Focus on what you can do. Take joy in that. Celebrate small steps “inchstones” as they say. Accept that your child advances to his own pace!
•  Educate yourself about your child’s issues so you can be a better advocate.
• Focus on now, what you can do now. The past can’t be changed regardless.
• Recharge your batteries. Have a mom’s night now and then. A few hours to unwind with a good book or take a nap. It is extremely refreshing.
• Know your rights and the services out there to help your child/family.
• Enjoy each moment for what they are even if it’s not what you thought it should be. Laugh, be silly, cuddle, etc. That lightens up any mood!

Lorna d'Entremont

I am a retired teacher with 30 years experience in French elementary classroom and more years as a mother and grandmother of Tourette syndrome and sensory sensitive offsprings. Upon retirement, I embarked on an interesting project with my daughter who undertook the challenge of creating a safe, wearable or attachable, effective chewable fidget for special needs individuals.