Coulda, Woulda, Shoulda

Bear with me, this is a happy story, really.

Tonight, my daughter and my wife are taking part in a sleep study. My daughter snores worse than I do and most of it is due to the as-of-yet-unamed OAV disorder she, my son, and I share. As many of you know, she had seven surgeries to open the airway behind her nose. What you may not know is that the ceiling of her central sinus cavity prevented the airway from being any wider.

While she is awake, she breathes very well. She runs around like any other two year old. When she is asleep, however, she makes sounds that would just break your heart. It’s not just snoring, but I actually can hear her stop breathing at times. My wife and I take turns sitting in the rocking chair next to her bed most nights.

I didn’t intend to share all of this, but suffice it to say that all of us are glad that she is finally in a sleep study tonight. Just as an FYI, those of you with sleep apnea may wonder what the treatment is for a small child. It’s not a CPAP unless there is no other recourse. After tonight, when they discover her apnea, she will have her tonsils removed. After that, we discuss a variety of options with our pediatrician.

Anyway, because the house is empty and my son is asleep, I have some rare time to think through and write some extended thoughts. I felt it important to share something I learned this past Sunday that I think can encourage many.

At the church I attend, children under 4 are in Sunday School all morning. They have a lesson when the rest of us attend class, but they have free play while the rest of us attend worship service. For my wife, Bible class means attending our son’s class and signing everything for him. Our son is pretty verbal and really smart. He could get by without her there. Its just that every other part of his life is signed, so it is important to us that he learn about God through sign as well.

For many of our other friends with deaf/hard of hearing children, the issue consisted of finding churches that sign or have a sign interpreter available. Every once in a while, we attend a church with sign interpreters for the benefit of our son. (It’s for us, too. It’s beautiful to see a hymn performed in ASL.) Still, this is the community where we choose to raise our children. This is the community that I pledged my heart and family to when we dedicated our children almost two years ago. It’s true that I teach our family doctrine at home, but I really want this group of people to be the ‘village’ that helps raise our children.

When money is tight like it is currently, some families throughout the US ask for interpreters and are told no. The main reason cited is cost. Families like this then face a very painful decision. You see, under the American with Disabilities Act, if you ask any place of business or worship to provide an deaf interpreter, they are legally required to provide one. (They are a very few exceptions to this law. Those exceptions are based on the size of the business or congregation.) But what family wants to use the law of the land against their home church? What heartache must exist for those families that felt they had no other recourse?

Personally, I believe that using the ADA to force the church I attend to provide an interpreter violates the spirit of 1 Co 6:1-11 and 2 Cor 10:3. Until now, we’ve been happy to do it, but for the church to really invest in the spiritual future of our son, something else needed to happen. We want others to be a part of his spiritual life. More than that, my wife needs to attend Bible class for her spiritual life as well. It’s tempting to do things the ‘American’ way and demand our rights, but events unfolded very differently. I think it is a testament to my wife’s great hope, perseverance, and hard work that events turned out as they did.

My wife and I prayed quite a bit. We decided to ask for a meeting of everyone teaching our son when he graduates to the 4 and 5 year olds. The leader of the children’s ministry also wanted to be there. We set a time and everyone came over to our home. Previous efforts to get help seemed to fizzle over time and I must admit that I was praying that we would get at least 50% support.

We all prayed together and then my wife laid out the basic needs and issues facing our son. We expressed our gratitude that everyone came over and got to business. I have to say that everyone listened very intently. We explained quite a few practicals and even covered some signs. By the end of our meeting, we got everything we asked for and a couple that would learn sign just to be able to teach the Sunday School lesson to our son.

We were very encouraged. Once again, I think it speaks volumes about the amount of love this little congregation has in its heart. We look forward to the future with a lot of hope and joy. Praise be to God whose spirit is working through the hearts of so many.

The provide some detail, here’s a partial list of practical things our son needs:

  • He needs someone to sign for him in class during lessons.
  • No one can walk or sit between him and the interpreter.
  • Songs have to be sung at the speed the interpreter can sign them. (This is change when he’s older.)
  • Even with the hearing aid, directional hearing is difficult. Everyone must look directly at his face before providing *any* direction.
  • The class needs to understand that our son talks with his mouth and his hands.
  • The hearing aid cannot be near any liquids, it costs thousands to replace and is not covered by any insurance.
  • The classroom has to be as quiet as possible or any benefit from his hearing aid is lost.
  • The interpreter needs to have the lesson ahead of time to learn the proper sign.
  • The Bible stories have to be determined word for word ahead of time so that the sign matches the story. (This is because of the type of sign he learns in school.)
  • Memory verses are a special challenge, how can this be addressed without making him the odd duck?

As you can see, some of these are no easy task. A class of 4-5 year olds being quiet for an hour? Yet, these and all the others were heartily embraced. Again, thanks be to God for his love shown through his people.