Grateful

"Let us be grateful to people who make us happy; they are the charming gardeners who make our souls blossom."
Marcel Proust

I've been thinking on this quote during this season of Thanksgiving. I've been thinking about people who make me happy and thinking about being grateful for them.

We spent Thanksgiving over at Sweet Husband's sister's house and Kellen got to hang out with some of the people who make him happy...his cousins. He enjoys being in their presence. Just after the Thanksgiving feast, Kellen was getting tired and needed to go home. Everyone at the table got up and lined up for a goodbye hug from Kellen. I was touched...Kellen is having an impact.


Hamming it up with the cousins.



Today as we were leaving church Kellen went to say good-bye to one of his favorite people on the planet, Terry. At home we call him Rock Star Terry because he sings in our church band and he looks like a rock star. As Kellen was giving Terry a bear hug, Terry said, "You make me happy, buddy."...and I melted just a little. Grateful. Happy.


Kellen dressed up as Rock Star Terry for Halloween.

Guardianship Bites

Other parents tried to tell me. Now I know. The process of filing for guardianship for your child is...hard.

Emotionally hard.

I'm not exactly sure why. I think it is because when teenagers without cognitive disabilities turn 18...it is a momentous occasion. It is a time when they are considered an adult. Parents let go a little more...if not completely. Eighteen equals freedom. More freedom for the 18 year old and also more freedom for his parents.

Kellen turns 18 in January. Filling out the guardianship paperwork feels like we are somehow going backwards. This is making it formal and official that our son legally needs someone to watch out for his best interests at all times. He is not able to do this for himself. Along with a "love" tie...we now will also have a legal tie. Instead of "parents" we will be "guardians".

Ouch

Standing in the Doorway

Like most new parents we received several cards and gifts after Kellen's birth. There was one in particular that I still remember even though it was seventeen years ago. It had a drawing of a little blond toddler standing in a doorway looking out. Oh, how I hated that card and the effect it had on me. Dealing with a surprise diagnosis of Down syndrome, pretty much everything made me cry that first year...and that card really got to me. In my mind, that little blond boy represented Kellen and how he would be an outcast on the fringes of life....always looking on, but never included. Always standing in the doorway, but not out in the world being a part of life. How could a little picture like that bring up so much emotion? I don't know, but it did. For me. In 1991.

Little did I know, back then, that what keeps Kellen in the doorway in October of 2008...are his own fears. Many days he wants to go out and participate in life, but he is unable to overcome his anxiety. So much of his energy is going towards keeping his fears at bay, that he ends up grumpy much of the time and unable to regulate himself. That's when the four-letter words never seem to end and the volume of his voice is stuck at "maximum".

There are days that he is able to gather himself and make it out the door...only to short-circuit later and shut-down. When he shuts-down he gets completely stuck. So stuck, that he is unable to tell you what he needs or move himself out of a stressful situation.

Last weekend there were a couple of situations where Kellen got stuck in public and I was afraid that something bad might happen. That the wrong person would get too close to him and say or do the wrong thing and Kellen (who was already agitated)...might accidentally hurt them. I've found myself in positions where lately I've had to tell total strangers that he is agitated and there isn't anything I can do to get him to______(fill in the blank: move out of their way, let them use the soda machine, let them in the restroom). It's downright humiliating for me and hard to think about the message that it sends to the public (people with disabilities are unpredictable and therefore dangerous.) All of this is enough to make me want to keep Kellen home and not venture outside even when he wants to.

Now we find ourselves standing in the doorway again. Standing here trying to decide if...at this point...admitting him to the hospital for a few weeks could be the right thing. Something that might actually help him have a better quality of life in the long-run. Maybe we can give the doctors the opportunity to find out of there is a medication that can help him. We are waiting for an opening at our local children's hospital and then I'll have to do one of the hardest things I've ever had to do. Let go...and hope for the best.

Direction

Where do you go when you don't know where to turn for answers? What do you hold onto when you don't exactly know what to hold onto? When your child is having medical issues...or behavioral issues...or mental health issues and you've done all that you know how to do...what then?

I pray and turn it over to God.
I cry.
I share with my good friends who understand.
I write.
I hold onto hope.
I wait.
Sometimes I put my grandfather's compass in my pocket.

My grandfather was a tough, old Norwegian. He hunted and fished. He loved the outdoors. He even saved a couple of lives when people were lost in the woods or drowning in a river. He was an amazing man. Larger than life. When he passed away I discovered his compass which he must have worn on his wrist when he went off into the woods. The compass is worn and looks like it has had a lot of use. I imagine it provided my grandfather with quite a bit of direction when he was unsure of where he should go.

Sometimes I put it in my pocket. Hoping for direction.

Looky Daddy's daughter is having seizures and they could use some good luck and positive thoughts.

Lucky

It's getting late, but I wanted to share something with you. I've been thinking all day about how lucky I am to know Kellen. How many of us get to live with someone who naturally knows how to love and accept people? Who takes them as they are and doesn't pass judgement?

It doesn't matter to him who you are or what you may have done in your past. I'm fortunate to have him in my life and watch him work his magic on people. We have a friend who is really hurting right now. His family seems to be falling apart and he is somewhat wracked with guilt. As Kellen and I passed by his chair this morning, Kellen gave him a peck on his head. A small thing, but our friend started to cry. Kellen's love is unexpected. His acceptance is a comfort.

How lucky I am to know him.

What Works

Sweet Husband and I have been married for 22 years this month. I guess you could say that we know each other fairly well by now. We've learned a little bit about what works and what doesn't work for the other person.

The last couple of days as I've been driving home from work, I've called from my cell phone to check in with SH. He has been ending the conversation by giving me a warning of what I'll find when I get home (as far as our kitchen remodel.)

"Don't flip out when you walk into the house and see a temporary wall up in the living room."

"Don't be surprised when you get home and see a trailer parked on the lawn...it's for the debris from the demo."

I appreciate knowing what to expect. After a long day at work it's nice to be prepared when part of your house is missing...

Today as I walked into the house I had a flashback, which kind of made me chuckle. This preparation that SH has been doing reminded me what he did to support me during Kellen's first year.

Kellen had four major surgeries on his heart or intestines in 1991. Sweet Husband is a nurse, but I had absolutely no experience with tubes, wires, medical equipment or even experience with hospitals. Neither of us had any experience with any of these in context of our own baby. I was very, very, afraid to walk into the intensive care unit and see Kellen for the first time after a surgery. Sweet Husband used to go in first and tell me what Kellen looked like and what kinds of things I could expect to see when I walked in. This was very helpful to prepare me...but even so, I would sometimes start by looking at Kellen from afar for a few minutes before I could convince myself to move closer. That year was a very stressful and difficult time for us...and we made it through by supporting each other and relying heavily on our faith.

Seventeen years later Sweet Husband is using a similar method of keeping me sane. Tell me what I'll see before I actually see it and give me time to process...that's what works.

Strong Women

I was reading what Kate shared at Sweet and Salty today and it got me thinking...how has what I've been through this year affected my understanding of what it is to be a strong woman?

For those of you who may be new to this blog...let me do a quick recap. This past year my 17 year old son with an intellectual disability had what they used to call in the olden days a "nervous breakdown." I don't know what they call it these days...a major decompensation? We've battled severe anxiety, depression, agoraphobia, and he had a significant regression in skills...especially self-care and independence skills. My son basically lost his personality and all coping skills. For nearly three days, he stopped eating and drinking. For the last ten months it has been as if my son's nerve endings were left unprotected on the surface of his skin. He could not even endure a shower without his entire body shaking afterwards. When I say we've battled...I do mean we. This has affected our entire family...deeply.

My son's personality is normally so large it fills a room. His sense of humor was legendary. The loss of that was a great loss for our family and those who are close to us. It gave me a small sense of what it must be like to lose a child or live with someone whose personality has been completely changed due to a traumatic brain injury. My heart broke into tiny pieces and it was very difficult to get through each day. What made things harder was the uncertainty. I did not know if this loss was temporary or permanent. I had no idea if it would last weeks or years. We'd have one encouraging day only to be followed by three days of further regression. Imagine being forced onto a roller coaster in the dark. A speeding roller coaster that was housed inside a frightening haunted house. Trying to hold on as best you can and hoping against hope that it will end soon...but it doesn't.

Now, finally, things are much better. We've turned the corner and exited the building out into the sunlight. We recognize our son...this funny guy with a smile on his face. He is affectionate again...animated and interactive.

Back to the question...How has what I've been through this year affected my understanding of what it is to be a strong woman?

I understand now how deeply my strength as a woman is tied to my faith in my God. Without this faith I would not have had the hope I needed to endure the last few months. The hope that things would eventually get better (despite months of things getting worse.) Trusting that if my son didn't get better...life would go on and we'd find a new normal. We wouldn't be given more than we could endure. We'd find a way to make it as a family who still loves each other. A family who will never give up on one of it's members.

I write about my strength today in order to give you strength.

Go conquer your world!

Things That Make You Go....Hmmmmm

I was thinking the other day about Freedom and about Independence. When it comes to people with intellectual disabilities they are often not permitted to be as independent as they may like in the name of Safety. It seems that in the world of disabilities the opposite of Independence is Safety.

Then I started thinking about my own life as a person without an intellectual disability. It seems that in my life Freedom is offset with Responsibilities. I cannot be as free and as independent as I like...because I have Responsibilities.

It kind of made me go....hmmmmm.

What makes you go....hmmmmm?

Power and Struggle

Knowing others is intelligence.
Knowing yourself is true wisdom.
Mastering others is strength.
Mastering yourself is true power.
Tao Te Ching

It's been kind of a gloomy morning outside. To brighten things up, I lit a candle on the kitchen table and then set about emptying the dishwasher. Not a minute later I heard Kellen blow the candle out. I didn't react...simply continued to empty the dishwasher...but this scenario started me thinking.

It would be easy to relight the candle. To relight the candle would tempt Kellen to blow it out again. This could easily become a power struggle...frustrating for me...maybe fun for him.

Without the thing to be struggled against, there is no struggle.

One thing I've learned through parenting Kellen is to avoid a power struggle. I am the middle child of three and by nature I'm a competitive person. I like to compete and I love to win. This was a fine, and even desirable, when I was in college competing on the tennis court...but I've learned that it doesn't work in relationships. Kellen, more than anyone in my life has taught me that many times the key to "winning" is not to play the game. Sometimes the key to winning is not to engage in the conflict.

He who controls others may be powerful, but he who has mastered himself is mightier still.

Sometimes winning is mastering yourself.

Sometimes winning is waiting until he moves on...into another room...and then relighting the candle.

Walking With a Limp

Never trust a man who doesn't walk with a limp.

I heard this saying on Sunday and it's been rolling through my mind.

Never trust a man who doesn't walk with a limp.

Don't take advice from people who haven't been through hard times. They don't know. They're not real. You won't relate. They can't support you.

They haven't been through the fire...been tested...burned...but come out the other side. If they had, they would still have scars. They would limp.

A person who walks with a limp remembers what she's been through. She's been humbled. She might always be recovering...but she can help you. She is real. You can trust her.

I walk with a limp. How about you?

One Parent's Perspective

Maybe you are a caring doctor, nurse, speech therapist, social worker, teacher or case manager and I am a loving mother or father. My baby was diagnosed with something at birth or labeled with something else as a young child. Maybe you need to break this news to me for the first time or maybe we'll be seeing a lot of each other this coming school year. What seems clear is that you and I need to work together for the benefit of this child...my child.

Before you tell yourself that I am in denial...first stop and think. What is denial as it relates to a parent of a child who was born atypical? What function does it serve? Denial is pain control. Denial may be helping me to function and survive the day. As long as my child is getting needed services, treatment, therapies, and is loved and cared for...is it so bad? If you think my child will never be able to achieve something and I think he can and he will...do we need to resolve our difference of opinion by putting a big red sign on it that says, "Denial"?

I don't want to be harsh or come across as sounding bitter. I do want you to put yourself in my position for a minute or two. I want you to realize how powerful your words to me are and how much your attitude impacts me and my child. Because of your position and our vulnerability your words, and more importantly, your attitude, have the ability to ruin my day...or even change the course of my child's life. That's a big responsibility. Now you know how I feel 24 hours a day...responsible. I don't get a break from it. That's why I often feel so overwhelmed.

What do I want you to know about disability? I want you to know that disability does not define my child or tell you who my child is. Disability will not tell you anything about my child's personality or what he will or won't be able to do. Please see my baby as a baby first before you see her as a baby with a condition. See my child as a child first before you see him as a syndrome or a disability. See me as a parent. A parent who loves her child and doesn't want to hear him referred to as "retarded" or "damaged" or "impaired".

If I am new at this...gently remind me with your words and actions that my child is a child and not a project. He is not a diagnosis. She is not the reason for my being. I do not have to lose myself in his care or sacrifice my life. As weird as it may sound...in order to keep my perspective I need to realize that I am not the one who has the disability. Support me to have that healthy separation that I will need to parent this child for the long-haul.

Thank you for caring. Thank you for being here for me and my child.

On His 17th Birthday

Dear Kellen,

Tomorrow you turn 17. I can't believe how old that sounds...how old that is.

Being your mother continues to be an incredible journey. You've guided us through some rough terrain. First there were the medical landmines: congenital heart defect, hirschsprung disease, pneumonia. After clearing those, then came the peaks and valleys of navigating the long trail through the educational system. All along we've stepped over, around and sometimes trudged through the mud puddles that are the labels you've been given of Down syndrome and developmental disability. This year we've been bushwhacking our way through the jungle of anxiety and depression. I say "we" because you are not alone. Your family has been traveling with you...we're a team.

On the eve of your 17th birthday I just want you to know that I have faith in you. Kellen means "warrior." That's what you've had to be. Your life so far has been everything but easy. I admire you. You are strong. You are strong in your weakness.

I love you and the man that you are becoming,
Mom

Beautiful Intentions

I don't really do New Year's resolutions anymore. I think it is better for me to think about what I want in my life, or what I want more of in my life, and write it down. Better yet, write it down and state it publicly. Blog it! Be intentional about it...and it will come.

What do I want for 2008?

Beauty

I want to experience the beautiful. I want to recognize it and then slow down to fully breathe it in.

How do I intend to bring more beauty into my life?

Visit the Museum of Glass. I've been wanting to go there for a couple of years and still haven't been. I will visit the Museum of Glass in 2008. There I said it. That wasn't so hard.

I intend to get out into nature and do some hiking. Sweet Husband will be absolutely ecstatic. He got a new backpacking tent for his birthday and we set it up in the living room, got in, sprawled out, looked at the stars on our ceiling that weren't there. It was so relaxing.

I plan to be intentional about planting my garden this spring. I vow to have a kick- ass backyard. This will take some thought, planning and preparation. This will be the year that I plan before I buy and plant. I may need some help. It will be fun to also visit some public gardens...so I'll do that too.

I love to experience beauty through music. A couple of years ago I set a goal to bring more live music into my life. I now have that. Our church has a rock concert every Sunday evening. It is often the highlight of my week. In 2008 I will continue to make live music a priority. I also want to discover new artists and bands to love. There is nothing like a new CD with beautiful music on a long commute.

I intend to delve further into photography. Getting a new camera and some photography books for Christmas is a great start. It is the perfect way for me to slow down, recognize and experience beauty. By documenting the beauty that I see I can experience it again and again and even share it. Maybe I will even take more pictures from my car window on the way to work.

Most importantly, I vow to recognize and appreciate the beauty that is inside the people in my life. Drink it in. Be in the moment more often. Be present. Say it out loud. Make sure they hear me.

What do you intend to bring into your life in 2008?

Saying Goodbye to 2007

Dear 2007,

Just a few more hours and you will be history. I'm sorry to be so blunt...but I won't miss you. In fact, I will be happy to see you go. I've learned a lot from you, and perhaps...in time...I will look back upon you fondly, but not now...not yet. Like a winter wind that cuts through to the bone...you have been harsh. You have forced us to huddle together in our home...looking out the window and reflecting...but hardly venturing out. It has been good to slow down a bit and yes, it has been helpful to reflect...but enough. Enough.

May we not forget the lessons that you have brought. May 2008 be more kind.

In the mood to reflect? Check out: 5 Powerful Reasons to Make Reflection a Daily Habit, and How to Do It

Ever So Slowly...Acceptance

Ever so slowly...things are getting better. Kellen is having better days. His mood is fairly stable and instead of the unpredictable pattern of good day/bad day/bad day...he is having mostly "good enough" days. Days where he can leave the house once or twice. He is far from the functional level that he used to be at...but we're learning to say, "It is...what it is." Kellen is doing the best he can and we are doing the best we can to support him.

Acceptance. It's a tricky thing. Dicey. Do we accept what is? Do we accept this new place? This place where our sixteen year old son does not go to school. Is not able to go to school?...or do we keep trying new things? Keep pushing for something better? Try to find the Kellen we used to live with or embrace our son as he presents himself? If we accept things the way they are...does that mean we are giving up? I don't know.

We take each day as it is. We encourage him to try a little more, but if there is too much resistance, we let him be. Always letting him know how much we love him and that our love is not dependent on what he can or cannot do. As his parents, we are accepting our own impatience, our frustration, our shortcomings, and our lack of control over the situation. As we move closer to accepting Kellen for who he is, we are also accepting ourselves for who we are.

I Am

I am the mother of a child with special needs.
I wonder about your future
I hear what you say to me...without words
I see your beauty
I want people to truly understand and accept
I am the mother of a child with special needs

I pretend I have everything together
I feel overwhelmed
I touch your soft cheeks
I worry that I am not enough
I sadden that I cannot make things better for you
I am the mother of a child with special needs

I understand what you don't say
I dream of an accepting world
I try so hard
I say things on your behalf
I hope you know just how much I love you
I am the mother of a child with special needs

Raising a Question Mark

I started to read this father's story today and was struck by the title of the second chapter: Raising a Question Mark. Yes, most days as a parent of a child with a disability, it does feel like I'm raising a question mark.

When he was born the questions were like these:
Will he live?
Will he be able to nurse?
Will all of his "broken" parts be fixed through surgeries?
How will his disability affect our family life?
Does this mean we are different now?
How will living with a brother with a disability affect his sister?
Can we handle this financially? What about emotionally and physically?

As he got a little older, the questions were like these:
When is he ever going to walk?
When is he ever going to talk and will we ever be able to understand him?
Will we actually be able to have a real live conversation?
Will he learn to read? Will he learn to enjoy books?
Will he be invited to birthday parties?
Will he be able to ride a bike?
What about drive a car?
Should he be educated in an inclusive general ed classroom or in a self-contained special education classroom?
What kind of a job will he be able to do? Will it be meaningful and one that he enjoys?

Now that he is almost seventeen years old, some of the questions have gotten deeper and more complicated:
Is he employable? Will he be employable by the time he is leaving the educational system at 21?
How can we support the development of his emerging self-advocacy?
How can we assure he will lead a self-determined, self-directed life?
Will he be safe in the world when he is living away from us?
What kinds of supports will he need?
How can we make sure his days will be meaningful and not be spent on the couch in front of a television?
Who will be there for him? Who will be there for him?

Questions. Lots of questions.

The truth is, all of us who raise children are raising question marks. When our babies are born, none of us knows for sure what the future holds. Those of us who have kids with disabilities are raising bigger, brighter, more powerful question marks. If we focus too much on the questions, we will miss enjoying the child that we have. Here. Now. As our children grow it is important to spend time thinking about the questions, but keep the big picture in mind: We are raising men and women, not question marks.

Notes On Getting Through a Crisis

Take care of yourself.

Network with other people. Chances are good someone else has been through the same thing.

Accept help if offered. Ask for help if it isn't.

Keep communication going...try not to isolate yourself.

Partner with your spouse to work together toward a common goal.

Change your expectations and celebrate the little things, take baby steps, plan for success, be flexible.

Keep your perspective -this too shall pass. The nature of a crisis is that it is temporary.

Be pragmatic. Do what you need to do to make it through.

Take a break if possible.

Hold on to hope.

Some Things I Wish I Didn't Know

Five things Kellen has taught me about anxiety:

Anxiety often masks itself as anger or irritability.

Anxiety can seem to appear out of nowhere. It is very unpredictable. It is not rational. You cannot reason with someone in the middle of an anxiety attack.

A person will often feel more anxious if they feel "trapped" in a situation with no escape plan.

Anxiety builds until a person feels they must fight or flee.

Anxiety is more "disabling" for Kellen than his intellectual disability has ever been.

Reimer Reason: The Complete First Season

One year ago today I started this blog.

I have two good friends and a mother who had been telling me for years that I should write a book about my journey with Kellen. I love telling stories about him and they thought I should be writing them down to share with a larger audience. Writing a book always seemed like too much to fit into my life. Too overwhelming. Too big. Maybe someday, but for right now, this blog is just right.

Do you ever find that you start something for one reason, and continue it for others? Do you ever plan to give and then unexpectedly, get more in return? Both have been true in this case.

I have found community here...I didn't expect that. I've stumbled upon support and acceptance, though I wasn't actively seeking it. Writing has been good for me, thanks for being here.