Hand to Hold's Official Blog: Written by Parents for Parents

Keeping the Preemie Milestones in Perspective

Milestones, standardized tests, and growth charts quickly become a nightmare for parents/caregivers of a preemie or medically involved child.  Instead of being things to look forward to they are constant reminders of what your child is NOT doing.  I think the first year is by far the worst.  There are so many milestones!!  Being a new parent and/or new to the world of children with special health care needs is a lot to take on as it is.

How do you deal with it?  Honestly, there is no right or wrong way, nor is there a quick easy answer.  When your child is medically complex and completely misses milestone after milestone you begin to feel very defeated.  I will share some of the things that helped me deal with missing nearly all of our milestones (she is 6 now, and we still have not hit most of the standard developmental milestones).  Hopefully some of you can use these to help get you through it as well.

First, we have to come to terms with a few things.  We are going to be late and/or miss some (or many) milestones.  It’s okay!!!  It doesn’t make your child any less wonderful or any less loved.  We are going to see other children hitting milestones on time or early and it’s painful.  This pain is real.  We need to recognize that our feelings are normal, healthy and that we are not alone.  I remember the first time after having my daughter that I saw a mom holding her toddler’s hand and walking down the street.  I was caught off guard with the jealousy that overcame me.  My daughter will likely never walk.  When I saw this woman and her daughter I just about lost it.  I noticed during that first year that these feelings would come on and take over ALL the time.  It was the little things that seemed to get me the most.  Once I realized what I was feeling I made myself work through it and figure it out.

While pregnant we spend 24-40 weeks (depending on the birth) imagining what life with our baby will be like.  We imagine cutting the umbilical chord, the first time they give us a big slobbery kiss, hold our finger, say I love you, etc.  When these “plans” are taken away, or delayed there is a sense of loss.  This loss needs to be grieved.  There are therapists that specialize in this area.  If you are not able to work through the grief on your own it may be a good idea to see a therapist. You can ask your doctor, a social worker or other caregivers to find a good therapists near you.   However you end up working though your grief, you have to face it.

After you grieve your loss the feelings do not go away.  I still to this day get very jealous and sometimes even angry.  The difference now as opposed to the first year is that I don’t add guilt on top of this.  I allow myself to feel these things and I understand why I am feeling them.  For me, the best way I have come to deal with these feelings is to change the focus.  Instead of feeling jealous and focusing on what I am missing, I think about how far my daughter has come.  I focus on what she CAN do and we celebrate all of her accomplishments big and small (even the tiny ones).  Another trick that has helped me is that I redefined our milestones and development goals.  I work with our doctors, therapists and nurses to create realistic short and long term goals for my daughter.

Each child is unique regardless of their health.  Focus on your own child’s achievements.  When we redefine our milestones to fit our child’s needs we are able to see how much our kids are developing.  When we get caught up comparing our child to everyone else’s we can get very down on our own child.  That’s not fair to anyone.  Each of our children should be appreciated and celebrated for their own accomplishments.

You can not escape the charts.  You will see the growth charts on every visit to your pediatrician during the first year.  You will see developmental milestones listed in parenting magazines and talked about between other parents.  You can not escape it, but you can be prepared for it.  It is just a number on a chart.  Our kids are much more than just a number.  Keep that in mind and let yourself be okay with missing or delaying a milestone.

When the doctor asks, be honest.  For some children this information helps the doctors to determine if something else is going on with our child.  There may be an underlying condition or learning disability that with some extra help may even be something that can be overcome.

I have never met a child that did not try their hardest on everything they do.  Lazy doesn’t usually kick in until teen years.  If your child is missing milestones, it is not their fault (nor yours).  If you feel like your child is close, but just not quite hitting them, ask for help.  Your pediatrician can help get you in contact with therapists or other specialists.  If your child is under 3, they may even qualify for early intervention services that have helped MANY children.

Marty Barnes About Marty Barnes

Marty Barnes (TX) is mother to Casey, a preemie born at 36 weeks.  Casey suffered trauma during delivery which resulted in brain damage, and she has multiple medical needs as a result, including a life-sustaining feeding tube. Marty established the CLU Campaign, a grassroots inclusion project, along with her daughter’s site which chronicles their journey. Marty is an active community volunteer and currently gives her time to Hand to Hold, Mommies of Miracles, and Texas Parent to Parent.

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