Dads have insights too

Exhausted, I fell into bed, complaining that EVERY interaction I had with Daniel today was adversarial. “Why is he so emotional with every response? Do I have to get an attitude and push-back with every question or comment?”

“Well,” says hubby, “think of everything we put him through today. First there was the removal of his recliner from his room over his protestations, with no negotiation. Then he was having trouble on his computer with a game site that just won’t work no matter what I do, and I can’t fix it, and there are some games on it he really wants to play. And then we removed all the furniture from the family room and set up camping chairs while we wait for our new ones. That kind of change is very stressful for him, he just expresses it in teenage attitude instead of tantrumming.”

“And then there was the fact that his weekly paycheck wasn’t ready at Papa John’s because of the holiday,” I said, “and he didn’t like the texture of the corduroy pants I bought him for work, so by the time we got to bedtime and I told him he didn’t need the ceiling fan on during the wintertime, he said ‘I don’t care! I want it on, OK????…”

“… he had a fit because that was the only thing he had control over today. Everything thing else was out of his control, so asserting himself on that one thing was important.”

Well said, partner. I love you.

Thanksgiving 2010

Thanksgiving 2010.  What a day.  I am grateful today for God’s grace and provision for us through this year.  We have ventured into new territory in founding ChosenFamilies.org.  It has been exciting and sometimes pretty scary.

Today was a good day.  Different than I would imagine in my best laid plans.  But good all the same.  We fulfilled a wish of many years today.  We organized our neighborhood and served our firefighters and police a Thanksgiving feast.  It was pure joy.  Really.  Every time I would think about it during the month of planning I would smile.  Then today as the ladies of the neighborhood brought their bounty and we loaded up 3 cars with traditional Thanksgiving fare I smiled again.  It came together.  The Royce family delivered to the firehouse and again I smiled.

Later we had our own Thanksgiving feast.  My dear husband fried a turkey.  Yes, I know.  For those of us who eat healthfully it sounds REALLY GROSS.  But it is remarkably delicious.  The hot oil sears the outside of the bird and cooks in all the juicy goodness.  It was a first attempt since 16 years ago when a similar effort was a joyful disaster.  But I digress.

As we sat around our table and ate our meal I tried to do the Thanksgiving of my dream — each person goes around the table and expresses their thanks.  I envision this as a beautiful exchange of affirmation and love.  But alas, it never is as I see it in my mind.  As we went around the table and each took a turn to express thanks things got a little messy a couple of times.  It wasn’t what I would hope but it is what God has given.  And it was good.

Sometimes we have to let go of our unrealistic hopes for our life to accept the life God has graciously given.  Wow.  That is a life lesson to live out daily.  Accepting what comes from God’s hand.  Paul expressed it this way in Philippians 4: 11-13:

I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.

We tend to forget that Paul said this from a prison cell.  Nothing about my world can match that.  So I give thanks today for God’s blessings and His gracious presence.

As we move into the coming days we will reflect on this latter concept: Immanuel.  God with us.

Happy Thanksgiving.  Be thankful today.

Lighthouse or Lightening Bug

Tucked in my corner of the world, trying to just cope some days, sometimes feeling alone in what I face, it’s safe to say I have not felt like some strong lighthouse beam for Jesus. I don’t picture a lighthouse beam being as confused as I have been ;) . Or as tired. While it’s true my faith has not been snuffed out by the waves of mental illness washing over our home – which is absolutely miraculous to me on a personal level – I just have to say “not snuffed out” is not exactly the gold standard of “impact for Jesus” I had envisioned as a youth!

This summer I was sitting on my swing in the back yard. It was right at dusk, my favorite time. For those warm soft summer evenings it’s a magical window of time when the fireflies begin to rise from the ground. For about 10 minutes they hover, low on the grass…..and then they lift away and disperse. From then on, I only catch brief glimpses of elusive random blinks against the dark. But for those first moments, when they are all close together, they form a sparkling carpet of beauty that defies description.

It restores my soul.

So I started humming a childhood Sunday school tune, “This little light of mine, I’m gonna let it shine..”…….. and suddenly, delightfully, I realized I had finally found what my own “light” is most like – a firefly! I think Jesus grinned.

This Little Light of Mine

I found a little light like mine
with tiny intermittent shine
Rising from summer’s grass each night
A fleeting, winking, irregular light.
Alone, so random, illusively small
But sparkling blanket when seen with all.
Sometimes it can be hard to focus,
With loud symphony of locusts
(full of years eaten)
Yet, in soul nights so dark,
even little lights spark
brief blinks of cheer,
“…God is here….
….God is near…”

The LORD is close to the brokenhearted and saves those who are crushed in spirit. Ps 34:18

“Then I will make up to you for the years that the swarming locust has eaten, the creeping locust, the stripping locust and the gnawing locust… Joel 2:25

Blinkingly, Joan

Thanksgiving, with a side of autism

Pastor Jim’s Thanksgiving sermon passage was Philippians 4:4-7. “4. Rejoice in the Lord always. I will say it again: Rejoice! 5. Let your gentleness be evident to all. The Lord is near. 6. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” [NIV]

He emphasized that in verse 6, relationship is essential for petition, that in our familial relationships, we are to balance our requests with thanksgiving and gratitude for what the other person means to us and has done for us.

From the choir loft, I sought my husband’s eyes in the congregation in amazement when Pastor Jim gave as his example, “Who wants to hear ‘What’s for dinner?’ every day without any thanks given for any other meal you’ve ever provided?” Has he wire-tapped our house? How did he know we have gotten this question daily since 16 year-old Daniel learned to speak?

We can’t exactly accuse our son of ingratitude, because that would imply a negative demeanor. He just isn’t thankful. Yes, he’s a teenager, but he’s never been thankful or grateful. Oh, he’s been excited about something he’s gotten, but that excitement has been directed at the thing, not towards us. This wears us down and makes parenting hard.

So God, please help me not to be like that towards You. Prompt me to include thanksgiving with my many prayers and petitions as I present my requests to You. I need You.

Thanksgiving or Trauma

What I find hard about the holidays is that there are more variables thrown into the pot…and no one but God knows how the soup is going to turn out. It could be terrific or toxic. And while I love a good mystery in books (yes, I started with Nancy Drew) I have never been that brave in real life.

First of all, it gets dark outside before supper, and I bet there’s not a bipolar alive who loves Daylight Savings Time. I would love to have a little sit-down with The Powers That Be that keep that little hiccup happening each fall ;) .

Then there’s the change in schedule. Everyone is off work, or off school, and that can just lead to being “off” altogether if you know what I mean!

And THEN there’s additional people woven into the fabric of each day. Grandmas, grandpas, aunts, uncles, cousins, in-laws, friends…and every one of them have a different effect on our bipolar family member. And our bipolar family member has a different effect on every one of them. And by the time we’re done, we’re all affected!

Without consultation plans are frustrated, but with many counselors they succeed. Proverbs15:22

I can’t begin to tell you how many counselors we have needed over the years. And as I head into Thanksgiving week, I am very thankful for them. As a result, we are able to make plans now that succeed more often than not. For instance, this Thanksgiving we are adding in a set of parents that do not accept the fact of a bipolar diagnosis. We haven’t been able to have them for about 10 years. But this year we are going to try that again. In baby steps. For two days. How long can two days be?!

We have waited until we could both feel comfortable with it. We asked trusted counselors for their advice. We have built in a safety net of sturdy relationships to surround us. We have built in an “out” for my husband if it triggers him too much…although honestly, I may be the one who needs out.  And now we wait.

And keep praying.

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

Hoping,  Joan

Beginnings are Not Better

The end of a matter is better than its beginning; Patience of spirit is better than haughtiness of spirit. (Ecclesiastes 7:8)

Solomon really hit that nail on the head. Twenty-five years down the road is MUCH better compared to the beginning of this “matter” of bipolarness (if there is such a word). A conversation I had today transported me back in time to our first years, and all I think is, “Thank you Jesus that we are not back at the beginning!” Back then, all I could think was “SAVE us, Jesus! Will there ever be an end??” It was horrific. No one told me “it” was coming. When “it” hit us, I had no idea what “it” even was. I didn’t figure “it” out for years, because “it” takes years for some aspects to reoccur. I’m reminded of a scene from one of my children’s favorite movies, “Princess Bride.” The hero is rescuing his damsel in distress…

[after Westley rescues her from the lightning quicksand]
” Buttercup: We’ll never succeed. We may as well die here.
” Westley: No, no. We have already succeeded. I mean, what are the three terrors of the Fire Swamp? One, the flame spurt – no problem. There’s a popping sound preceding each; we can avoid that. Two, the lightning sand, which you were clever enough to discover what that looks like, so in the future we can avoid that too.
” Buttercup: Westley, what about the R.O.U.S.’s?
” Westley: Rodents Of Unusual Size? I don’t think they exist.
[Immediately, a R.O.U.S. attacks him]

I could relate. Just as we figured out how to manage one problem – escaping with significant singe – another terror would emerge. I was mentally exhausted trying to figure it all out. It’s hard using an average brain to predict someone else’s genius brain that is misfiring!

Can I just say I am glad we are where we are today?! Although by nature bipolar challenges are repetitive, there is only one “beginning” …when it all starts. And we are not there. We get what “it” is. We have more good times than bad now. We know which medications help. We have a support system in place. We have tried and true plans that usually work for us. Our family and friends have made their peace with it. Or fled the scene altogether. We see this suffering has changed our character for the better. We are more patient and humble, though we still need more of both ;) We have desperately depended on Jesus to supply our mammoth needs, and over the perspective of years, we can actually see He has done that. We’ve survived…so far ;) . Thank you Jesus!

Meet My Son

The challenges we face on a daily basis seem overwhelming at times. We have a son, a special son, who is so amazing and so dear. He is gifted and has a remarkable view of the world. He has a perceptive mind and sees things that are lost to others. His gift for language never ceases to amaze me and his ability to choose just the right word or analogy to paint a picture that captivates your mind is unsurpassed in my experience. His spiritual observations and insight are a constant challenge to me.

But he also has bipolar disorder.

It isn’t possible in one initial blog to tell you everything you need to know. I can’t go back and give you the entire history unless you have time for a personal memoir. What I can tell you briefly is that, at times, the most simple things are unbearably complicated.

The latest example happened last night. He decided after a hiatus from Scouts that it was time to rejoin, to get engaged and pursue the goal of making Eagle Scout. We signed him up, bought the uniform, and went to the annual spaghetti dinner. You would think this an easy place to initially come in — a pleasant, family style dinner around tables at the local church.

It could not have been more of a disaster.

You see, our son is remarkably awkward with kids his own age. He is terrific with adults — pick a subject and he can carry on an hour long conversation on the subject of your choice. He is great with young children — he will get on the floor and play with them or read them a story.

But he simply does not know how to make friends with kids his own age. He knows he is different and his interests are different. No matter how much we try to coach him on how to make and keep friends he remains alone. He does not have a friend to his name.

Last night was a perfect picture of why.

Instead of going to a table filled with other boys of similar ages, he came to sit with us. He simply was not comfortable approaching a table of other kids, sitting with them, making conversation and enjoying the evening.

He talked with the adults at our table and did not understand when I turned to mention quietly that the adults were talking now. “Mom, just because I am short doesn’t mean I can’t have an intelligent conversation.”

This is true. He can have an intelligent conversation. But he simply could not see that his behavior was inappropriate.

Then as the evening wore on, he got up to lumber off and remained gone for 15 – 20 minutes. He was so uncomfortable with the surroundings that he had gone off to the bathroom and stayed away. The awards were taking place and the slide show was happening and he was off by himself because he could not get comfortable to participate as a young teenager.

It was sad beyond words. I felt so grieved for him and wondered how in the world we are to teach him what for most kids comes fairly naturally. I wondered how in the world he will have any normalcy in his life if this is how he deals in social settings.

I was so grieved.

I got up this morning to have my quiet time. Even as I read the Word and prayed there was little comfort.

It wasn’t until later in the morning as I talked with the Lord about last evening that He reminded me of I Corinthians 1: 26-31:

“For you see your calling, brethren, that not many wise according to the flesh, not many mighty, not many noble, are called. But God has chosen the foolish things of the world to put to shame the wise, and God has chosen the weak things of the world to put to shame the things which are mighty; and the base things of the world and the things which are despised God has chosen, and the things which are not, to bring to nothing the things that are, that no flesh should glory in His presence. But of Him you are in Christ Jesus, who became for us wisdom from God — and righteousness and sanctification and redemption — that, as it is written ‘He who glories, let him glory in the Lord.’” (New King James)

And I wept to remember. God did not make a mistake when He created my son. It was not lost on the Lord that my son would be awkward and different — often seen by the world as weird or foolish. No, this is not lost on the Father. He sees. He knows. He loves this child. My son is called according to the wise plan and purpose of a loving God. God has plans for him to bring glory to Him.

What a great God we serve. Cling to this with me today.

Lovingly,

Hannah

Welcome to Holland

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

written in 1987 by Emily Perl Kingsley about having a child with a disability

http://en.wikipedia.org/wiki/Welcome_to_Holland

My Family is Like Yours

My family is probably a lot like yours. I tell you this because if you have come to ChosenFamilies.org thinking I have all the answers then you will be sorely disappointed. No, I and my family are on this journey just as you are. In some ways we may be ahead of you on the journey; in some ways we may be behind you. But we are there with you on the path.

We have good days and bad days. Good moments and bad moments. Occasions when we trust the Lord well and occasions when we don’t. Like you, we argue at times. Like you, we laugh at times.

We are on this journey with you.

If you are looking for connection and companionship, I hope you will find it here. If you are looking to seek answers or to share answers, I hope you will do it here. If you are looking to gain encouragement or give encouragement, I hope you will display it here.

I come to this place much as you do. Some days I will give an answer but some days I will seek one. To some extent, once this community is founded it will become what it will become because of your involvement. In some ways that is scary to me. But it is also exciting. I look forward to what God will do in this place and through this ministry.

Because my family needs this place as much as yours does.