How to Be the Best Parent to Your Special Needs BabyKatlyn Joy |25, January 2014
"I don't care if it's a girl or a boy; I just want a healthy child!"
You've been dreaming of the day you finally see your baby, hold the precious gift in your arms and look forward to your new family life at home. Then it seems everything collapses in on you because you are awakened from your dreams into an unimagined reality.
The Big Adjustment
Perhaps the biggest step is the first one; coming to terms with your new family reality. Things will not be as simple and worry-free as you hoped, not as convenient or tear-free as you dreamed or as other families take for granted. You are the parent of a special needs child. Some parents may have a head start on the process, getting info from prenatal tests that indicate something may be awry. However, for many parents it will come as a shock in the delivery room.
Expect a storm of emotions to swirl about you as you make your way through this new journey. You may feel fear, anger, abandonment, grief, or even guilt. "Why is this happening to us?" "Why have our friends all withdrawn from us?" "Is this my fault? I shouldn't have kept drinking coffee."
Find a safe place to express to express your feelings and fears, to vent your anger and frustration and let out whatever is simmering beneath the surface. It doesn't have to be a counselor but that's not a bad idea, either. Friends, close family members, friends or perhaps other families you came to know in the NICU make strong support contacts.
Keep a journal for your eyes only, where you can be unfiltered and unrepentant about your thoughts and feelings.
Become Your Child's Best Advocate
Chances are, your child spent some time in the Neonatal Intensive Care Unit or NICU. While there you may not realize it, but you picked up some vital skills you will need in the years to come. You've entered the world of medical jargon, you've become acquainted with teams of medical and other types of professionals and have learned to ask questions, and how to follow up. Build on those skills to continue to get the best opportunities and help for your child, whether it's making certain your child's medications are properly dosed for him, or securing physical therapy for your growing toddler, or getting your daughter properly placed in the right educational setting for her needs.
To do this, keep detailed logs and notes of every appointment, every test, every direction you receive from every doctor, therapist, nurse or teacher and any other professional working with your family. You are the coach of this team. You facilitate the communication between each team member, you make the calls, you check the progress, and no one better than you knows what's needed. Trust your instincts, and above all, your knowledge of your child. You know better than anyone if something is amiss.
Read up on your child's condition. Books, websites, and magazine articles are just a start. Find support groups that deal with conditions like your child's or general support groups for families of special needs children. Know what's standard care for your child. Learn about cutting edge treatments. Stay on top of the trends and the news.
Take Care of Yourself
It's so easy to put yourself so far back on the priority list as a parent, but even more so as the parent of a special needs child. However, it is a recipe for disaster to neglect yourself, your marriage or your other children.
Make time for yourself. Even if it's just a special 30 minutes of alone time to take a long shower, give yourself a pedicure, or read a sleazy novel, it's important for overall functioning. Give yourself a minimum of a half-hour a day. For your marriage, give yourself a night of unparental time at least each week. Maybe you won't be able to grab dinner out or a movie once a week, but aim for it.
Make sure other kids in the family get special alone time with Mom and Dad as well. They are children and cannot be expected to forever be put on hold, or to the side. Consider counseling or a support group for them as well, to have a space where their needs are understood and accepted.
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