Topics Of Discussion
Coping with Developmental Delays

wisdom from the Preemie-l e-mail group           http://home.vicnet.net.au/~garyh/preemie.htm

Kerry shares, "Just wanted to share some info I got from a nursing conference I attended on Fri. It was about the NICU dad. The info was fair about the dad - they tried to show how it is different for the dad and how he heals emotionally (usually much faster and easier). But what I wanted to talk about what something they brought up at the end - developmental delays and parents coping.
First they said parents should be prepared in the NICU to face delays later in development. They should be taught coping skills to help them through this.  But... funny part - they mentioned this in only in regards to babies born with concrete disabilities, such as Downs syndrome. Of course I piped up and said that this info needs to be shared with preemie parents, too, regardless of gestation or weight. Had an OT chime in and totally agree. She said the NICU's are sending the kids out and saying "oh yeah they'll catch up, etc etc, have a good life" and never mention things like delays, or even Early Intervention (as we are finding here on preemie-l).
But this is the most interesting part... They are discovering that parents of preemies and parents of children with developmental delays might be experiencing "chronic sorrow". (There are some journal articles I am hunting down on this.) Chronic sorrow, in a nutshell, means that parents come in and out of a sorrowful state, but never resolve it. It is usually triggered by a specific event such as "milestone distress" which is when the child is supposed to be meeting a certain milestone (but doesn't) and this is reinforced in some manner (such as playing with like aged children, or reading a parenting magazine or book, or comparing children). The part that really gets me about this chronic sorrow is the belief that the parents feel they have resolved the issue, but somehow it continually creeps back into their minds and hearts, producing sadness and disappointment, as well as fear, anxiety and worry.
In addition, the speaker shared that chronic sorrow can lead to less than proper coping mechanisms, such as becoming a "super parent" - a parent who is a total expert on their child and anything that could possibly be related to their child. In addition, she felt that parents with chronic sorrow experience guarded hope, where they hope that things will improve, but in the backs of their minds, they continually doubt it...
...I wonder if this theory can account for our constant return to a fearful, saddened and anxious state about our preemie's development in the early years that we constantly see mentioned here on preemie-l. I know I feel this way. I was relieved in a way to hear that there is an actual term for this condition, other than calling myself paranoid, crazy, and obsessed, as well as unhappy with my child, and a demanding mom."

Jan adds, "About Dads-did they say why some or many dads have a quicker and easier emotional recovery course? I know it is true in our house. I am curious to hear what some preemie-l dads have to say about this.
Chronic Sorrow-This seems to describe me quite well. I make an active effort NOT to compare the twins to their same age peers because it hurts inside when I do. In daycare there are another set of twins (FT) that are maybe 6 months older than Ben and Kerry. I try not to compare my kids with these twins because they seem so much bigger and definitely more advanced in their language. Ben and Kerry seem to get along best with the FT kids that are a few months younger than their chronological or corrected age. For me it is an emotional rollercoaster. Sometimes I see them and I think they are really not that different than their peers, and minutes or hours later I am feeling a stab of sorrow that they need special services to make the gains they've made. Then I feel so proud of them and thankful that they have made the gains they have. Then I feel bad for going through this spiral of emotions. Why can't I just be thankful and leave it at that?
Steve, my dh, does not seem tormented by these same rollercoaster of emotions. He does not ponder the universe that has led us all on such a ride in the past 2 years. He really seems to be able to say that all of the events of prematurity happened, but now it's over and the twins are healthy and doing well. He thinks speech therapy is fine but is not convinced that their speech progress isn't coincidental with therapy. Maybe they would have made the progress without it.
I thought that it was because I had PTSD that these feelings effected me more deeply. Steve never had the flashbacks, but he occasionally has nightmares so I know the preemie experience did not leave him untouched. I wonder how chronic sorrow relates to PTSD. Perhaps PTSD makes chronic sorrow more likely in the process of accepting potential disabilities in our children. Could chronic sorrow relate to the ongoing anxiety we preemie parents feel about the unknown future?"

Amy reacts, "Thank you so much for sharing this information! What you wrote describes how I feel and react. I can't resolve these feelings, I can't stop comparing even though I try, I just can't shake the feeling that something is really wrong. I put on this facade that everything is ok, Zoe's come so far. I come away with a sick feeling after seeing other kids so much so I try to avoid being around them. This may sound dumb but the fact that there's a term to describe what I'm feeling helps me a lot-I don't feel like such a bad parent. "
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