Parenting Children with Special Needs: Feelings of Isolation, Grief, Guilt and Fear

Kristina Smith Blizzard, mom of a child with special needs, registered nurse, and advocate was my guest for one of The Coffee Klatch Tweetchat. She is a wonderful person to give you advice on parenting children with special needs. We had an excellent session with lots of participation! The tips and comments that make up this post come from the many tweets from Kristina and all those who joined us. I have added links and other information to help parents of children with special needs overcome the feelings of isolation, grief, guilt, and fear that so many parents feel.

Who Is Kristina Smith Blizzard? Tell Us about Your Children

I am a registered nurse and blessed to be the mother of two kids with special needs. My son Logan was born by emergency c section for fetal distress just two weeks early. He was born very blue and limp, and had to be resuscitated. I suspect he received a mild anoxic brain injury from his birth. He was developmentally delayed and received occupational therapy (OT), speech therapy (ST), physical therapy (PT), developmental intervention, and play group. His formal diagnosis has changed over the years to the current list of high functioning autism, ADHD, and Central Nervous System Dysfunction.

We spent four months in the neonatal intensive care unit (NICU) with my preemie daughter. Morgan is a former 26 week micro preemie. She was an impossibly small 1 pound 13 ounce (840 gram) baby. Due to her extreme prematurity she developed a bilateral grade 4 intraventricular haemorrhage, (a really big, life threatening brain bleed).

Wanting to connect with other special needs parents eventually lead me to start an online support group for Special Needs Parents. So I started my Facebook support group “Loving a Miracle – Special Parents Supporting Each Other.” There are 821 members currently.

We just kept putting one foot in front of the other. Prayed a lot and cried a lot. We looked for others who had similar journeys. I feel confident in the fact that I am the expert on my kids. I let others have their opinions, but the decisions are MINE.

Parenting Children with Special Needs: Isolation

One of the hardest thing I have found for parents raising children with special needs  is the feeling of being alone.

• Sharing my 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.
• Joining online support groups like Loving a Miracle – Special Parents Supporting Each Other. Think of all the collective years of experience 821 people have, and it is right at your fingertip.

Parenting Children with Special Needs: Grief, Denial, Anger, Guilt about Diagnosis

All parents of a newly diagnosed child with challenging needs 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.

Parenting Children with Special Needs: Thinking Others Don’t Understand

• Unfortunately many don’t understand. When you try to help them to understand they don’t listen or they minimize it.
• Unfortunately you are right. Many don’t wish to listen.
• Outsiders don’t understand. What we experience is outside of their experience. Their perspective is totally different.
• Too many people say their NT kid does the same thing, like they know what we’re going through.
• Too many teachers have said “all my kiddos do that.” Sure, but not the same way!
• The first post on my blog is called “A Few Feet and  a World Apart” It is about how my world is so different from that of a typical parent.

Parenting Children with Special Needs: Lighten the Load

• Special needs parents must 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.
• You have to 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! 🙂
• Read good blogs–I love Stimeyland –good laughs!
• Don’t forget all the great books/ blogs written by parents who share their difficult journey with tips and encouragement. Read “Following Ezra” which has a positive message about enjoying your child and escaping the need to “fix”. Try reading the story “Welcome to Holland by Emily Perl Kingsley. ” GOOD story!
  
• Check our Special Needs Book Review site. See list of recommended special needs parenting books below. 
  

Parenting Children with Special Needs: Difficult On the Marriage

The best thing you can do for your child is take good care of yourself and your marriage. Give them a stable home. The more couples can communicate at difficult times like these, the greater their collective strength. Being proactive in maintaining your marriage is important. It is easy to put that on the back burner when so much else is happening. Having a medically fragile or special needs child does greatly increase the divorce rate. It is important to maintain that relationship.

Men often want to down play their children’s issues, which is common, and frustrating. Men and Women grieve differently, which can lead to misunderstandings too. True! Men like to fix problems.

Look into classes like those called “Love & Respect” which help strengthen the marriage.

Parenting Children with Special Needs: Fear of the Future

You have to remember that statistics can be scary, but your child is not a statistic. One mom revealed: “I had no time for Fear after we came home because it was Work, Work, Work! I was going to prove them wrong and give her the BEST of LIFE! ! My daughter is paraplegic, 24/7 ventilation and oxygen. They said she’d be in a vegetative state! Now they call her Their Miracle Child! My daughter will turn 20 next month and she graduated in 2010. We couldn’t have asked for any better school support. That is what makes the days worthwhile! The Love Of Your Child Is Priceless!”

• I am not overly impressed with people in white coats with letters behind their name. I have letters too, important ones…M. O. M.!
• LOVE it!! You are right. They may know the medical, we know our kids for WHO they are not WHAT they have.
• Some of the very best things I learned as a special needs parent I learned from other special needs parents, not any official channel.
• That’s why I love chats like this and online support groups and stories. They get it!

Kristina Smith Blizzard adds: “We were told our daughter would never walk, and she doesn’t, most of the time she RUNS! ” And the poet among us tweeted: “Even in the darkest of night, it is in those darkest nights that you see the stars the best.” ~Carol ~

The most important part of being a special needs parent is accepting the life the diagnosis brings. It’s mothers like you who truly help others from feeling worse, feeling more isolated or even feeling depressed.

Pain divided is not nearly so hard to bear as is pain in isolation.

Thanks so much to Kristina Smith Blizzard and all the participants for sharing your wisdom and encouragement!

Links to Our Reviews of Parenting Books and Sites for Special Needs Parents:

• Uncommon Beauty – Crisis Parenting From Day One -byMargaret Meder

• The Common Sense Guide to Your Child’s Special Needs: When to Worry, When to Wait, What to Do – by Dr. Louis Pellegrino

• Optimistic Parenting: Hope and Help for You and Your Challenging Child – by V. Mark Durand, Ph.D

• Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs  –by Jolene Philo

• The Coffee Klatch
• March of Dimes
•  Ronald McDonald Houses Canada
  
• Ronald McDonald House Charities US
• National Respite Locator Service, National Respite Coalition & Lifespan Respite Training/TA Center to assist and promote the development of quality respite and crisis care programs