Marriage Wisdom for Parents of Kids with Special Needs

A few weeks ago we attended an event called "Pursuing a Healthy Marriage while Parenting a Child with Special Needs". (Whew! How's that for a mouthful of a title?) It was a fabulous use of time and childcare expense.

The speakers were a couple who have raised three children to adulthood, including a son with autism who is almost 30 and still lives with them. I think they could have sat there saying, "Blah, blah, blah, blah . . . I still love God." and we all would have left encouraged. Most of the people I know who have children with special needs have young kids. We're all pretty fresh to this journey. Most of us are so busy surviving that we don't have time to think about issues like "What's my kid going to be like when he grows up?" and "What will he do when we no longer have the school system?" These are really scary questions. But it was so encouraging being in the presence of people who have gone before us and have done well.

Here they were, two mellow, wise, warm people who were sharing honestly about their real but good lives with a sense of soberness but also peace. It was like a parable -- some mysterious but attention getting teaching that elicits a response. My immediate response was awe. They did it. They're doing it. And their faith, their marriage, their sense of humor were still intact.

But here's the really interesting thing that they said. We kept asking them, in different ways, "Uh, so how do you keep your marriage from going down the tubes?" Most of us have read about the horrific divorce rates for parents of kids with special needs (some say 80%). All of us feel the extra strain that we live with. Here's what they kept saying, "You have to constantly give the other person the benefit of the doubt. You are stressed. They are stressed. You have to find a way to both give each other extra leeway because you are both dealing with so much more pressure."

Now, in some ways, that's a no-brainer. It's such an obvious piece of wisdom. I might even have come up with that if asked. But being in the place that I was, asking that question deep within my heart and mind as I came to this event, it has become this perplexing thing stuck in my head.

How can I become a person who gives my spouse the benefit of the doubt more of the time?

How can I have the perspective that here is a person who is struggling with the extra, extra challenges of having a child like Josh? Most of the time I am thinking, "You are not home with this kid. I am doing more for him than you do. I get to be the stressed one and you should be the supportive one." (Yes, I'm really that immature/ yucky inside toward the man that I love.) It seems like another dimension of reality to be a person who regularly, if not constantly, keeps in mind how much my spouse is carrying and is able to choose to be empathetic toward him.

I've been trying it a little bit. I am praying for my husband in his role as a father. I am trying to express appreciation more. (After all, he is one hell of a dad!) I am trying to be less demanding and more willing to give the benefit of the doubt, especially when he's not doing well. Often, what this looks like is deciding to keep my mouth shut and just give him some space. Today I had a household feedback item that almost flew off my tongue like a little mosquito in search of blood. At the last minute, I thought about whether this was the time that would be best for him to hear this little tiny thing. It probably wasn't so I stopped and decided to mention it at another time. It was the tiniest of victories but very real.

Lord have mercy on me. . . on us. Please help me to live in the reality that you are FOR me more than Alex ever could be. Please give me the security that I need to be able to be FOR my husband. Please help me to contribute to the health of my marriage every day. I really, really want to make it.

The Great Party

Last night at our "Extreme Parenting" (support group for parents of kids with special needs) meeting, we reflected together on the passage in the Bible in Luke 14 about the Great Banquet. Jesus tells a story about a man who prepares a great party and has his servant go tell those who had been invited that everything was ready and that they should come. The passage goes on to talk about three people who made various (lame) excuses about why they couldn't come (purchased land, new cows, new wife). The host was angered but, instead of calling the whole thing off, he tells his servant to go get the "poor, the crippled, the blind, and the lame, " and to bring them to the party. He does but there is still more room so people from "the highways and the lanes" are brought in so that the house may be full and, presumably, as many people as possible could enjoy the party.

Now, studying scripture with different groups of people is so interesting to me. It really does feel like the Bible is alive because it "comes to life" so differently depending on the perspective that you have (as an individual or a group) when you come to it. This particular night, we were struck by the craziness of inviting a bunch of "people with special needs" to a party. Several of us shared, with some amount of pain, that our disabled kids don't often get invited to parties. Think about it, who would want a party full of people with autism? or ADHD? Many of our kids are not the people you think of when you imagine having a fun party. Somehow, they are forgotten when it comes to gatherings or playdates. And honestly, many of our kids have behavior issues that don't jive with having fun at a party. One mom shared that for a while her autistic son had a thing with chewing on power cords when going to other people's houses. We've taken Josh to birthday parties but he usually spends them trying to get away from the chaos and the noise of the other kids. He will always find his way to the back of a bouncy house where the motor and fan are and sit so he can enjoy the concentric circles of the fan and the humming noise, which he will mimic (for an hour if I let him). I guess he's having fun but it gets to be a little weird after a while. I have a feeling Josh is just never going to grow up to be that person who can walk around with a cocktail in his hand, ask people how they are doing, and charm them with delightful stories.

However, it struck us that Jesus is telling a story about a host (God) who WANTS all of these disabled people at his house. I can tell you that it was probably not easy to host a bunch of blind, lame, or otherwise disabled people in your house, especially in those days, where people with disabilities were not valued, empowered or integrated into general society. These were probably uneducated, unemployed beggars. Who knows what their social skills were like. One does not gain social capital from having a party for this crew. But they had need and clearly wanted to receive what was being offered. None of them made excuses.

And what of these people from the "highways and lanes"? My guess is that they were either travelers, homeless, or prostitutes-- also, not the population that one might invite to a lovely, delightful, socially smooth party. Yet this is what this host does. "Bring them in! Compel them to come!" he says.

It was a pretty profound thing to watch a bunch of parents of kids with special needs to realize that God is someone who wants our kids in His house. He would be willing to deal with a house full of people like them - and the baggage that they bring. And if the party/ banquet is an image for heaven, then there is a message in the scripture that there is room for a person like Josh in heaven. In fact, he might be more likely to get there because he is so clearly needy and in need. Joshua has never made an excuse in his life.

Sometimes I forget that there were disabled people throughout human history and in Jesus' time as well. As our little group has studied various scriptures that either mention or apply to the disabled, I've been amazed at how the scripture speaks. It is so full of application to our lives. As a group of parents of kids with special needs, we started having brief scripture studies/ devotionals because we are a group of people who are so constantly in need of encouragement, even more than venting (which is not always encouraging). I went away from our gathering full of thoughts and hope.

Oxygen Mask

Last week my daughter and I took a quick trip to Los Angeles to visit a friend. On the flight down, the flight attendant gave me the usual quick talk about how, if we were in an emergency situation, I should put on my oxygen mask on first then help my child with hers. Externally, I nodded in a respectful response. Internally, I was thinking, "Are you kidding me? If I were in a situation where there was no oxygen, am I really going to put a mask on myself first and let my child sit there without enough air to breathe? I don't think so."

Despite my emotional response, I've been thinking a lot about the image of a parent putting the oxygen mask on themselves first and then on the child. It makes sense. If the parent passes out or is incapacitated, the child isn't in a very good situation, is she? Ethically, a parent has a responsibility to put themselves in a situation where they will actually be able to help their child. Otherwise, trying to put the child first could actually be endangering the child.

I attend a monthly meeting for parents of special needs kids in my church. We call our little group Extreme Parenting. It has been a life line for my husband and I as we navigate life with Josh. We talk about the image of putting the oxygen mask on ourselves as a metaphor for what we are trying to do when we make/ take the time to meet with other parents, pray, vent, share, reflect on how scripture speaks to us as parents, and process the challenges of our lives together. We are taking care of ourselves so that we can be best equipped to take care of our kids.

It seems to me that there is a great need for parents in general (and, especially parents of kids with special needs) to take care of ourselves. My observation is that depressed, isolated, overwhelmed, angry parents of kids with special needs are not exactly what one would want for these kids. Yet, why is it so difficult for us to take care of ourselves so that we can best take care of others?

It's a new year. In 2010 I want to do the following things so that Josh can have the best mommy that I can be:

1. I want to keep going to Extreme Parenting and to give myself to that community.
2. I want to make sure that I am having regular date nights with my husband.
3. I want to go to the YMCA at least twice a week to exercise.
4. I want to keep writing on this blog at least a few times a month to process what is going on in my head.
5. I want to blow dry my hair and put on make up once in a while so that I'm not just living like an overwhelmed mom who meets needs all day long all the time.

If anyone reading this post has any other ideas, I'd love to hear them!

Quitting Coffee (or "How am I going to make it through another day of parenting on very little sleep?")

For the first time in a really, really long time, I am attempting to live my days without coffee. I have acid reflux that flares badly when I drink coffee, causing me to wake up in the middle of the night several times each night, coughing because I have stomach acid in the back of my throat. It's a little like being in a constant state of almost throwing up. It's very unpleasant and I have become desperate enough to finally heed my doctor's advice to go two full months without drinking coffee to see if it makes a difference.

How much do I love my coffee? Let me give you a little bit of my history with coffee.

When I lived in LA a few years out of college, I lived with a household of four women who all drank coffee in the morning. We made a big pot of Folgers or Safeway brand or some other cheap coffee. Maurine, who was from Northern California, had to make her own espresso in a little metal percolator (I think from Italy) which she put directly on the stove. She and her Bay area friends were very into their coffee. Very. When we went to conferences, they brought their own coffee with their own french presses. We used to make fun of them.

Now, I am one of them. I live about 3 minutes from a Peet's coffee and about two minutes from a Philz coffee (which is amazing). I have become that suburban mom who has several cups of coffee in the morning and finds excuses to get a cup from a coffee shop in the afternoon as well. I have evangelized several friends on the multi-sensory delights of Blue Bottle Coffee (an "artisan coffee" which is only sold in a few places in the Bay area. I am told that they won't even sell it to you if you confess to the vendor that you are going to drink it later than a week after they have roasted it.) Yes, it is a unique, snobby, passionate, probably addicted coffee culture that I swim in and I have given myself completely to it. I love me my coffee.

I have to implicate my husband as well. For several years now, the first words that I often hear from my beloved's mouth in the morning is "Who's going to make the elixer!" And when I do (or he does) that lovely aroma of freshly brewed coffee envelops us with comfort and encouragement as we endure getting three grumpy children ready for the day.

A big element of my coffee history is my son's sleep issues. Josh was not allowed to sleep through the night for the first year of his life because he couldn't go that long without eating due to his "failure to thrive"/ low weight issues. But even beyond that, this was a child who had big troubles in the sleep department. When Josh was 5 we found out that he had obstructive sleep apnea so he had surgery to take out some of his tonsils and adenoids. It's been a long, long journey. Basically, until this past year, Josh woke up in the middle of the night 6 out of 7 nights a week crying and stimming for several hours. In the fall of 2006, I had a one year old who slept well, a newborn who woke up hourly, and a 4 year old autistic kid who screamed and cried from 2-5am every night. I rarely slept for more than 2 hours at a time and never more than 5 hours total. I am not kidding. Sleep was just not something that God seemed to be giving me.

How I survived, I have no idea. I think it was one part faith, one part survival instincts, and in large part, coffee. I could absolutely drink caffinated coffee at 9pm and fall asleep as soon as my head hit the pillow. I was that constantly tired. This is definitely when coffee and I became very, very special friends.

Any of you parents of special needs kids out there feeling what I am saying? Anyone else turn to a little something chemical to help you make it through very long and challenging days? Maybe coffee? Maybe something else?

Currently, for the first time in many years, Josh sleeps through the night more often than not. . . and when he wakes up, he's usually pretty content to hang out in bed. In other words, my sleep is not horrible. My life is becoming more and more "not in crisis". We are slowly moving out of just surviving. There is a little bit of margin here and there, especially since the girls are in preschool.

But I was not yet ready to part from my beloved warm cup of energy. . . or so I thought.

It's been three weeks since I stopped coffee cold turkey. Shockingly, I still make it through my days. My life has not fallen apart. I am not completely void of energy as I feared that I would be. Could it be that I have a deeper source of energy than coffee?