In a Perfect World

Letter to Leeanne

Dear Leeanne in 1987,

How are you? I am fine.

That’s kind of the point…to let you know I am fine in 2011…24 years into your future. But there are some things I want you to know so I’m writing you now in case someone perfects time travel and I can get this letter to you somehow.

There are things you worried about needlessly, and other things you didn’t worry about nearly enough. So let me tell it to you straight, sister, here’s what I wish you knew right from the start about raising a child who is deaf.

Brace yourself: 1987 is a very big year…you become a mother in June. You bring forth a son, name him Dane, and wrap him in a swaddling Onesie and lay him in the same bassinet that used to be his dad’s. An heir…a namesake…you have done well, by anybody’s standards. He’s a perfect little golden boy. Please indulge your mother-in-law all her references to how much he looks like a Seaver…turns out, she’s going to be right: he will take after that side of the family.

By Christmas, you’re already wondering about his hearing. At the daycare, the phone rings right into the nursery and all the little babies react except yours. The grandmotherly ladies working there tell you how smart Dane is to know how to tune that important noise out. As a first-time mom, you are delighted with this assessment of the situation; they would surely know better than you since they are experienced mothers, now with grandchildren…years of experience. You feel your doubts and anxieties keenly, and like being told you are a worry-wart, to relax and enjoy your baby. Your instincts are telling you something is wrong, but everybody else is telling you to lighten up.

The pediatrician reinforces this message whenever you build up the nerve to ask him about Dane’s hearing. He indulges your concerns by irrigating Dane’s ears so any waxy build-up will be cleared out. Eventually, you take him to a preschool hearing screening you heard about where a lady does a tympanogram and announces he is fine, just normal fluid due to teething, not to worry. You don’t know that this is not actually a hearing test. Then your husband’s job moves you to Virginia and now you’re in a new place with the same old anxieties. No one is around who knows you or your baby, and without their calming effect, your worry about his hearing pushes you to find out how to get it professionally evaluated. You learn there is a test that even works on a baby, but it’s Christmas time and you don’t want any bad news to spoil the holidays, so you put it off until January. This is how it happens that Dane is 18 months old before you discover that he is “severe to profoundly deaf.” Your initial, big reaction is FEAR. Well, I’m here to tell you that FEAR is good…you should have been far more fearful 18 months ago. If you hadn’t given into the ridiculous efforts everyone made to keep you from being worried about him, Dane wouldn’t have to spend the rest of his life dealing with the language delay and all the fall-out that goes with that.

So let’s start with that first lesson that has proven to be true again and again over time…and with a lot of other things you’re going to need to know about raising your deaf child:

1. Trust your instincts.

That’s right: trust your instincts.
Continue to trust your instincts.
Become suspect of anyone who dismisses your concerns, or steers you away from trusting your instincts.

2. Worry about his language development earlier and more often.

It’s not ok to be behind—not at all ok. Don’t settle.
It’s ok to teach him bad words, too, in fact, you better make sure he has a linguistic arsenal just like every other little boy.
Be concerned when he is not expressing himself adequately or often.
Use figurative speech…supply him with a new idiom every day. Do it.

3. Work towards the things that matter…apply yourself productively.

Is it better to start H&V or work on grammar? The answer to that could change daily.
Is “speech” more important than the message? Don’t ever tank Dane’s message or meaning.
Siblings count…recognize their part. Know that you probably aren’t doing them justice…tell them you know you aren’t doing them justice…then give yourself some grace.
Hold your whole family to the high standard you expect Dane to reach relative to effective communication and full access to it.

4. Ask for Help.

Get over yourself…make the extended family work at this, too.
Get rid of the professionals who are not all that “helpful.”
Make Dane help himself more often…MAKE HIM.
Watch that rescuing/co-dependency thing…it’s going to be very hard to overcome any program you give him that he is “entitled” to anything just because he is deaf…the system/government incentivizes a “disabled” identity with money—this is the kind of help that is not at all “helpful.”

5. Be the Mom.

When faced with the dilemma, “should I correct his speech/language or just let this precious moment between us happen,” you should always let the moment happen. Never address speech/language issues when it compromises the connection between parent and child. Never ever.
While you’re being the mom, don’t forget to be the wife, too.

6. Cut yourself some slack.

Your hearing kids are going to have some of the same social/emotional issues that your deaf kid had, not to mention educational challenges. Every drama Dane faces is not because he is deaf.
You did the best you knew how…we all do…some of where you fell short of the goal was due to circumstances beyond your control.
Dane is going to be whatever he makes of himself…the lesson of parenting a deaf young adult is DETACHMENT.

There’s a lot more I could say, Leeanne, but this is a good start. In case time-travel is never perfected in my lifetime, I am going to go ahead and use this letter in my H&V column so others might benefit from my human cautionary tales. However, IF the time-space-continuum is mastered and you are in any position to move forward into 2011, please rush to me before March of that year and warn me NOT to do the roller derby workout thing with Oregon H&V’s Helen Cotton Leiser after GBYS training in Portland because that is going to result in a serious accident that will necessitate physical therapy on my elbow. If you could at least get that word to me, I’d really appreciate it.

Love, Leeanne