Tuesday, December 16, 2008

After the diagnosis

You all must've known that after the flurry of light-hearted posts, we'd have to throw in a serious one. We have talked many times about the period right after we got Quinn's Fragile X diagnosis, how we were feeling, and what was or would have been helpful. I wanted to write this post while the feelings were fresh enough to remember, but no longer too difficult to write about. We got Quinn's diagnosis about five months ago. For about a year before the diagnosis, we knew he was delayed in his development, but we didn't know why, and we didn't know that it was a permanent (or perhaps someday, but not today, curable) condition.

We are very grateful to many family members, friends, co-workers, and acquaintances who expressed their love and support for us. Some of them commented, "I don't know what to say/do." At the time, we were so consumed with our feelings, we didn't know how to respond.

Now that we've had a little time to think, we have some ideas, which we hope will be helpful to people grappling with a new diagnosis.

When other sad events happen to a loved one, friends and family may feel awkward or unsure about what to say or do, but there is usually a social script or personal experience to rely on. For example, many people have experienced the loss of a loved one, and we have ways, as a society, of dealing with that, like bereavement leave, rituals, and offers of casseroles. We have no social script for dealing with parents who have just learned of their child's special needs diagnosis, and most people have not personally dealt with something like this themselves and statistically speaking, they probably never will.

So here are some things you can offer - or ask for - in the period right after a child receives a special needs diagnosis:
  1. Time off from work and other social obligations. One of the things that was hardest for us was that we felt expected to carry on with business as usual. This was very difficult. We desperately needed a break, and found it difficult to ask for one.
  2. Babysitting help. As much as we love and adore our little guy, it was hard to process this information on very little sleep while avoiding tragic toddler accidents, changing diapers, reading Dr. Suess, and wiping a constantly runny nose.
  3. Help with household stuff. For the first couple of months, we were so sad and exhausted that just paying our bills, doing laundry, and maintaining our house felt onerous.
  4. Social outings that do not involve children. For the first couple of months, just seeing typically developing children was heartbreaking.
  5. Meals, flowers, cards, emails. All of these little reminders that people care mean so much. We treasured the kind words and deeds of our friends. One night a friend of mine invited me over for dinner, when her husband was working late, after her son had gone to bed (see #3). The dinner was spaghetti with jarred sauce and a green salad. I cried in the car on the way home after seeing her, out of appreciation for her kindness. It was so nice to get to talk with her in a quiet, warm, comforting space, and not have to cook or do dishes.
  6. Culturally appropriate spiritual healing. Since there are no rituals for making the transition to being a parent of a child with special needs, it is helpful to find places, people, books, music, and ceremonies that mark and make sense of the experience. We're not talking about the facts; we are geeks and have read too much about Fragile X, early intervention, medications, etc. Edited to add: We are also not talking about the utterance of religious maxims such as, "This is God's way," which can be unhelpful, insensitive, or culturally inappropriate. This is about processes for dealing with the existential stuff: What does this all mean? What now? We are still looking for more ideas on this one, and welcome any resources others have found helpful. (And yes, we've seen "Welcome to Holland". It's okay, but not really doing the job.)
  7. Shared language. One of the things about this diagnosis, and probably a lot of other special needs conditions, is that in addition to dealing with feelings of sadness, a parent must also become an expert in the child's condition, quickly learning new words, people, and places. The more friends and family know, the easier it is to communicate about our experiences. Even day-to-day conversation can be encumbered when in the course of making plans, we casually say, "Quinn has an OT appointment that afternoon," and then have to pause to explain what an OT is and why Quinn has one. We love it when people know the lingo because it makes not only the "big" conversations less taxing, but the everyday small talk as well.
To help anyone dealing with a new diagnosis who has found this page by googling, we hope that other parents of kids with special needs who read this blog will use the comments section to add your thoughts on what was or would've been helpful to you, or write a post on your blog and link to it here.


Zachary Drake said...

Thanks for writing this, Sarah. This is one of those posts that "needs to be out there".

Our therapist said to us that this kind of diagnosis should be given all the weight of a major family event like a death, divorce, major illness, or the like. And she was right. It took a lot of work for us to give ourselves permission to take it that seriously. And there isn't the general knowledge out in society that it should be given that same spiritual weight. So I always feel a bit awkward when having to take time off work or decline a social invitation, and I don't think there would be such awkwardness if it had been because someone had died or had cancer.

That being said, Quinn isn't dead and isn't terminally ill and is actually a very happy little guy. But our dreams and expectations for him (even those we didn't know we had, or rather especially those) in some sense do have to die and be reborn as something else. Unless of course he's somehow completely cured, in which case things will transform again.

Vicki Davis said...

A few thoughts... You might want to add to the list, see a Therapist for yourself. Our situation was a little different, we found out when i was 22-24 weeks pregnant and I had a few days to decide if I would terminate or continue my pregnancy. We saw a Therapist to help us talk through what all of this meant. Not having any idea what it would be like to have a special needs child, being two highly educated parents, both having had graduate education, and those types of "dreams" for our child, and as Zach says letting go of the dreams we didn’t even realize we had. The fear of the worst, and not knowing what to expect.

Different because it was a fear of the unknown, and a choice.. Versus being in the thick of it and finding out an answer you may not want to hear. So therapy helps.

But also a Comment on Number 6. This may not be for everyone right away. it is truly a grieving process, and acceptance takes some time, and I don't think I am there yet. One day hearing something like "God wouldn’t give you anything you could not bear" may be reassuring; on another it would make me so angry I might not be able to function. So those, it was meant to be type things, or imagine the new lessons you will learn on this path ect. Don’t always help.. and on some days make me feel like the person is belittling my situation, telling me it was meant to be, so what.. I should just suck it up... It takes away my "right" to sometimes still be angry, sad, or grieve... So I would just recommend that one be careful on that type of thing.

I still don't know what to say to people in this situation, I am ashamed to say, I feel so grateful that Holly is a girl, and honestly I don't know if I could function were she a boy, and wanting a second child, that possibility terrifies me....

it is all very complex.

Also, I appreciate your blog... Mine is so "light" but I keep it that way mostly because it is so much for the family, and I don't think they really understand all that we go through yet, they still hope, so much so that it feels like denial sometimes, and if i show the smallest hint of sadness they worry.

Anonymous said...

Excellent post Sarah!

Sarah said...

Vicki, thanks for all the great comments. As Zac noted, in his comment, we did see a therapist who specializes in talking to parents of kids with special needs, and that was enormously helpful. So good point. Also good point about #6. I edited that a bit to clarify what I meant. I totally agree that it is not so helpful when people invoke God in a maxim. #6 is more about finding rituals, readings, etc that are truly healing. It's very individual. One thing I found helpful was spending some time at Kabuki Springs in SF one day - just being in the candlelit, peaceful, reflective environment was very healing for me. In fact, I should go there again soon!

Thanks for the compliment, fxsmom.

Melissa said...

Thank you for enlightening me with this post. I know at times I am at a loss for words in situations and I wish I had the right words, expressions, and comfort to offer. I agree with you about finding readings, rituals, meditation, quiet space.. for healing.

Jen said...

Good ideas.
After Kyle's diagnosis, I had ONE person call me who seemed to "get it." This person was just a casual acquaintance; I don’t think I had ever talked to her on the phone before this. Why did she understand? Her son, who is 2 years older than Kyle, had been diagnosed with diabetes a few months before Kyle’s FX diagnosis. A couple of years ago (which was about 10 years after the call, and she’s still just a casual acquaintance), I thanked her for that call; it meant so much to me. Oh, and I have two wonderful sister-in-laws (husband’s sisters) who, although I don’t remember specific phone calls, are good about talking about it.
At the time of the diagnosis, we had lived here almost 3 years, and I didn’t have a lot of connections. I was young—my friends from my high school days weren’t married yet, they had no children, and were 4 states over; they were very distant from my situation. I was so alone.

I think it may be difficult for people to acknowledge an FX diagnosis because by doing this, maybe they feel like they are saying, “Yes, something is “wrong” with your child; man, that sucks. Oh, and it's because your genes are screwed up? Yikes, sorry about your luck,”--who wants to say that to someone! People are often proud of the genes that they passed down...like they had something to do with it...what do you say to someone who passed down a gene that can cause mental retardation--which in our society it means "not the norm," "less than average," etc, because, well, it's not the norm, and it's not above the norm...
I don’t know, just a thought.
With all that said, once again, your ideas are still very good!