Stressful Situations

Kellen had a Special Olympics bowling tournament today. Although his anxiety is much better, there was too much noise, disorganization and commotion for him. He hung in there for a few frames, but after awhile it was just too much and he decided he was done and wouldn't get up for his turn to bowl. Too many people pressuring him to perform. Too many expectations. We left early.

Times like this are pretty hard for me. Leaving feels a bit like giving up. I start to feel a little sorry for myself. Bad thoughts enter my head. Thoughts like, "If my son is too 'disabled' for Special Olympics, what can he participate in?"

As we walked to the car, I was feeling sad and tearful. While I was waiting for Kellen to get in, I happened to check Facebook on my iPhone. One of my friends who has a child with autism had posted as her status, "Christine is telling you to handle every stressful situation like a dog. If you can't eat it or play with it, just pee on it and walk away."

Is it weird that reading that made my morning?

It was such a coincidence that Kellen and I had just peed on it and walked away and then I read that on my iPhone. I felt so much better!

So now I'm telling you to handle every stressful situation like a dog. If you can't eat it or play with it, just pee on it and walk away.
Let me know how that works for you : )

Life is Good

Just a few updates:

D.Q ended up moving to the Ukraine instead of Turkmenistan. She arrived today?...or yesterday? and I read in her email this morning that she is safe, warm and happy. That's all a parent could ask for. I'm so excited to see pictures and hear her adventures over the next two years.

Kellen is doing so well...I keep having to pinch myself. It has been exactly a year this month that he was admitted to the hospital and he has come so far in the last twelve months. He has been working with an art tutor for the last several months. He goes to her basement studio every Friday for an hour of drawing. He is eager to go every week and thoroughly enjoys his time there. He's attending his employment transition program five days a week and has a caregiver after school two days a week until dinner time. He's bowling with Special Olympics once a week. We've created a Saturday morning routine of going to Starbucks for a breakfast sandwich. He's been losing weight (which is a good thing!)

It has been satisfying to watch his world expand from spending all day in his bed to having fun things to do every day. One of things I love to do is think of new things for him to try...things that will fill his life with activities and relationships.

Where Everybody Knows Your Name

"Be glad there's one place in the world
Where Everybody Knows Your Name
And they're always glad you came
You wanna go where people know
People are all the same
You wanna go Where Everybody Knows Your Name" Cheers

Besides school and his work program, Kellen regularly visits a couple of places "where everybody knows his name". This morning I observed him handing out programs and greeting people at church. He gives attendees a program no matter if they want one or not. Go out to get coffee and come back?....get another program. Taking a bathroom break?...get a second program upon your return. Just try to get by Kellen without receiving a program...it's not easy.

Many of the people at church are very gracious and have gotten to know Kellen. He shakes their hand or pats them on the back and calls them "Tough Guy" or if they are small, "Little Chief". Since today was a special day, he was sure to wish people a "Happy Mother's Day." Church is one of those places where he feels comfortable and he knows far more people than I do. Church is a place where everybody knows his name.

Kellen also goes to the health club with his dad every weekend. They make the rounds between sauna, jacuzzi, steam room, and swimming pool. Nearly all of the employees and many of the members know Kellen by name. They enjoy his company, and Kellen does not ask much of them. Last night there were three men sitting by the jacuzzi....Sweet Husband calls them Kellen's Korean Godfathers. When Kellen walked into the room all three of them smiled and waved. Kellen went over and shook their hands. He feels a sense of acceptance and belonging at the club...everybody knows his name...everybody's glad he came.

Duh

Kellen has this thing for remembering when movies were released. It comes from watching movie trailers at the theatre. At the end they always state the date a new movie will be released in a big, booming voice. Years later he will randomly say, "Spiderman 2, May 4th".

Yesterday, we were riding in the car and we hear Kellen say excitedly from the backseat, "Coming in December!"
Sweet Husband asks from the front seat, "What's coming in December?"
Kellen replies, "Christmas!"

Done

It's done.

As a family we drove this morning through a slight dusting of snow to the courthouse. We arrived early in case it was hard to find where we needed to be. The four of us waited on a bench outside the courtroom for our attorney to arrive. The Guardian Ad Litem was there too. Kellen was doing really well, but for extra insurance, I pointed to the pop machine a little way down the hall and told him he could have a Pepsi when we were through. Since we got there so early, it seemed like a very long wait. I was feeling very nervous and really wanted to get it over with.

Finally our attorney told us we could head into the courtroom and find a seat. It was a very small room with about four pews to sit in. The four of us, plus our attorney, took up an entire row. I nervously sat and listened to several cases go before us. None of them were guardianships. They seemed to be about separation, property, blah, blah, blah. I was too nervous to take much of an interest.

When our name was called, we went up front and stood before the judge's bench. I think our attorney said a sentence...or two...then the judge asked how to pronounce Kellen's name. I pronounced it for him...and that was all any of said. The judge was very nice and with a small smile on his face told Kellen he could visit his courtroom anytime he wanted to...even if he just wanted to watch.

That was it. Really...about five minutes and twelve hundred dollars in attorney fees. We are now officially Kellen's legal guardians.

We all had the day off work, so we went out for pizza and then came home to decompress. We decided to watch a couple of episodes of Burn Notice that we had recorded. Kellen doesn't do much of anything quickly, so we were surprised when right in the middle of the program, Kellen jumped up and ran into his bedroom. He came back out wearing Elvis sunglasses and carrying twin Maverick Rev-6 Nerf guns fully loaded with Nerf darts...then sat back down with us on the couch.

This kid is always good for some comic relief.

Valentines Day

Kellen has wanted a cell phone for a couple of years and he finally got one for his birthday in January. Since he got it, he hasn't been using it much, I think his main interest was in having his own, not necessarily making calls.

Today was an exception. Every time he saw one of us use our phone, he picked his up and started dialing. We were in the car this afternoon and Kellen had his phone out again. I asked him who he wanted to call and he told me that he wanted to call one of his uncles. I dialed the number for him and handed him the phone. His aunt ended up answering and somehow the phone ended up on speaker phone...which was perfect as we were able to hear her side of the conversation as well. If she didn't understand what he was trying to communicate, we were able to say the word on speaker so she could get it. The funny thing was, every time she didn't understand a word...instead of repeating it...he YELLED the word again into the phone. Did I ever tell you what a loud voice Kellen has? He can really project. It was really funny (but maybe not for Kellen's aunt whose ears are probably still ringing.)

After the call was over, Kellen muttered under his breath, "That was embarrassing." I've always thought that Kellen felt embarrassed, but this was the first time I've heard him use the word. I felt a little bad for him, but mostly proud that he was able to express how he was feeling which is a huge accomplishment.

Later in the evening Sweet Husband, Kellen and I went to a movie together. Sitting between my two Valentines, holding each of their hands, I felt incredibly fortunate and grateful. It doesn't get much better than that.

What's New?

Kellen is doing well enough that this week we are increasing the time he spends at his employment/transition program through the school district. After his morning work program, instead of coming straight home, he will eat lunch at school and then come home. Over time, we'd love for him to be able to stay until 2pm for a full day. I guess you could say that he is building up his emotional stamina.

Kellen's newest word is "text". As in "I send a text". Isn't that just like an 18 year old?

We are in the process of a ton of "adult transition" stuff. We'll be going to court for his guardianship next month and we're in the process of applying for SSI. We opened a checking account for him and he just received his checks in the mail (that was kind of a thrill for me!) When we were done at the bank, he wouldn't leave the desk of the woman opening his account until he'd kissed her hand.

He Has Shoes

What do you do when your son's feet are as wide as they are long?

It's always been difficult to find shoes that fit Kellen. I usually have great luck in the children's department at Nordstrom, but I found out last week that he has totally outgrown the kids department and needs to shop in the men's department. The thing was that the only shoes the men's department had that were short enough...didn't come wide enough. At least they didn't have any shoes in stock that were both short and wide. I looked at the guy waiting on us and said incredulously..."so...were just screwed??" He looked back and said..."well, at least for now."

I went home determined to figure something out. Kellen can't go without shoes the rest of his life. Armed with the knowledge that he had measured about a men's size 6 at Nordstrom, I went on zappos.com and typed in their search engine both that size and also typed in the widest they came. It came up with a couple of athletic shoes that looked good...so I ordered a pair. They come as wide as 6E!

Two days later they arrived on our doorstep and they fit perfectly! How awesome is that?

My son, he has shoes.

Birthday Recap

1. I still haven't found a Wii and I keep getting outbid on Ebay. I've decided to just chill and wait until places get restocked after Christmas.



2. Kellen did get a cell phone! He has been wanting one for about three years. We decided not to add him to our plan, but just get a pay-as-you go type phone. He is ecstatic to have it. The morning after his birthday, I found it in the pocket of his jeans which were in the laundry basket...sigh. Teaching him how to use it and take care of it is going to be a process.



3. We had a big open house for Kellen birthday at Peaks Frozen Custard. There were a lot of family and friends in a small space...but he did GREAT. It proved to me how far he has come in the last couple of months. I'm also learning some tricks which help him cope: Get there early before other people arrive. Have him settled at a table and give him something to focus on like drawing or doing a puzzle. Make sure he has something close by to eat or drink.



I am anticipating a really great 2009 for Kellen. 18!
Hold on!

Little Things

It truly is the little things.

This morning Sweet Husband got home from working a graveyard shift and went straight to bed. Kellen usually shaves with an electric shaver, but he ditched it somewhere awhile back and we haven't run across it yet. I looked at his chin today and decided I couldn't stand to look at his blond whiskers any longer. It was time to do something and with Sweet Husband sawing logs...it was up to me.

I didn't know if I could do it. I've never shaved someone's face before. I got out the shaving cream, razor and towel and went to work. Kellen stood as still as a statue for the duration. That made things easier. I proceeded very slowly and watched for bright spots of blood. There weren't any! I thought of all the times I've watched Sweet Husband shave and tried to recall how he did it. Pull the skin this way and run the razor that way. Hey, I can do this. Slowly, his baby face returned and we were done. Perfect? No. That's okay, it was fun and I didn't kill him.

It's the little things.

Snowbound

Soooo....Sweet Husband has a 4-wheel drive and is a nurse. Therefore he goes to work on a Sunday even when the rest of the world stays home under the covers. He dropped DQ off at her job on the way. Kellen and I have been inside all day. Kellen has been in his room watching a television which isn't working well. His choice.

Soooo...I'm in the family room answering a text message from a co-worker who was just checking in. Out of the corner of my ear, I notice the volume on Kellen's t.v. is increasing. It's getting louder and louder. Finally it is so loud that I can't help but notice he is watching some kind of infomercial. A very...graphic...infomercial about...colon cleansing?? There is talk of checking out one's bowel movements...and more. I sprint to the bedroom to turn the channel. Yes, sprint.

That was the most exciting thing that happened all day.

That's what I got.

What do you got?

Here I Am

Well now.

What have I been doing while not blogging?

1. Organizing two holiday parties. One for work and one for my parent's group. As of last night, they are both over.

2. Working, working, working and more working. Having a new job is hard work. Good work...but hard work.

3. Not Christmas shopping.

4. Worrying about not Christmas shopping.

Kellen has been out of the hospital for well over a month now and he is doing great. He was able to attend both holiday parties. He was anxious and got very overstimulated. He was wound-up, loud and inappropriate at times...but he was able to go. That's huge. He has also been going to his work program every day and hasn't had to take any "mental health" days. For the most part he has been able to do his volunteer greeter job at church as well. When we discussed changing K's medication while he was in the hospital it was really important to us that his personality not be affected. We did not want to live with a zombie. The great news is that we have a more functional son who feels better, can get out of bed, and lead his life...and retains the essence of who he is: fun, affectionate and magnetic.

Thankful

This morning I put on a sweater that used to belong to my grandmother. I probably only wear it once or twice a year at the most. About ten minutes after I put it on, I realized that today was November 23rd...her birthday. Coincidence?

Kellen was motivated to go to church today for the first time in a long time. He passed out programs with his dad and greeted people as they came in. There was a new family sitting in the row in front of us. They had a beautiful 19 year old daughter with long, flowing brown hair...and Down syndrome. She and Kellen shook hands for about five minutes with smiles on their faces. Could this be love at first sight?

During the sermon our pastor was mentioning how he misses the kind of hugs his three sons gave him when they were young. Afterwards, he came over to say hello and Kellen gave him a big hug and didn't let go for quite some time. You haven't been hugged until you have been hugged by Kellen. I think it meant a lot to our pastor and it certainly warmed my heart.

Thanksgiving is a few days away and I am thankful.

Hankenstein

My kid is weird.

Today when he got home from work he seemed a little hyped up. I decided to give him lots of space so he could unwind,take a break and relax. After awhile I heard him rustling around in the refrigerator, but I took my chances (that he could be making a big mess) and stayed in the other room. In some ways Kellen seems to be regaining some of the independence skills that were lost in the "fog" of the last year and a half of anxiety and depression...and I'm really happy to see that.

After awhile I went into the kitchen to check on him. He looked at me and said something that sounded like, "Hankenstein". Halloween was only a couple of weeks ago and I was wondering if he might have seen something that frightened him. I replied, "Frankenstein?" He kept repeating the word that sounded like "Hankenstein"...although it began to sound more like a request. I knew I wasn't going to be able to figure it out so I asked him to show me. He said, "On my bed." I was still kind of in the "Frankenstein" mode so I was wondering if he was thinking that Frankenstein was under his bed or something. That could explain why he didn't sleep very well last night.

I opened the door to his bedroom not expecting to see anything unusual. Instead, there lay a package of tortillas in the middle of his perfectly made bed. It was just lying there looking like it was waiting for something. It looked so funny and horribly out of place, I had to laugh. Picking it up, I walked back into the kitchen. Remembering that we had soft tacos a couple of days ago, I held up the tortillas and asked him if he wanted a leftover soft taco. He said yes...so I made him a couple...emphasizing the words "soft taco" the entire time.

I did kind of want to call them Hankensteins though.

Conversation with a Casemanager

At my request, Kellen's case manager from the state came to our house on Friday to get an update on his status. I always find it difficult to explain Kellen to someone who doesn't live with us. Kellen is a complex person and what you see is not what you get. He is a combination of interesting ingredients. He is a mixed bag.

I think the most perplexing part of the afternoon we spent together was when we looked at her computer at the section of most "prominent" behavior. That was a hard one. Last year I had chosen "uncooperative". This year I had a hard time choosing between "uncooperative", "irritability and agitation", or "compulsive and repetitive". The challenge in supporting Kellen is the combination of things. It is irritability and noncooperation that turns in extreme agitation with a bunch of compulsive repetition to make things downright annoying.

It was a three-way tie, but I could only pick one. I think I finally settled on "irritability and agitation" because that is probably the behavior which could potentially get him in a heap of trouble.

Then we talked about Kellen's hospitalization and what I learned from that experience. This was the first time since Kellen was a newborn that he has spent two weeks away from us. It showed me how much we do for him. We assure that he takes a shower and stays clean. We monitor his emotional state and try to make adjustments as needed during his entire waking hours.

This led into a conversation about what it would take for Kellen to thrive after he moves out of our house. My dream for him is to be able to live in his own place with as much support as he requires. I would love for him to have a committed and talented support staff who will be able to work with us to make important decisions on Kellen's behalf. People who will take excellent care of him...in fact, care for him like he has been cared for in our home. People who will be creative when it comes to thinking about what could improve his life and take his personal growth to a new level.

As we were talking, we both realized that Kellen has been raised in a home where he has a registered nurse (dad) and disability advocate (mom) on "staff" seven days a week. We work for free. Not only do we work for free, but we love him....and we have almost 18 years of experience in caring for him

Duplicate that.

He's Home!

Someone is very happy to be home...




...and we are so glad he is home as well. There is something about locking your door at night knowing that your child is not home that is more than unsettling. I know I will sleep better tonight...and my guess is that Kellen will too.

Improvement

This morning I drove up to the hospital to see Kellen. I hadn't seen him since Saturday as I decided we needed a break. It's been hard on both of us when I visit. Whenever he sees me he has been so obsessed with going home that we can't even enjoy our visit. I hate to see him so upset. Although I haven't been going to the hospital very often, Sweet Husband has been up there everyday either before or after work.

I brought Kellen a new Spiderman t-shirt and he put it on right away. He seemed in good spirits and was very affectionate towards me...almost to the point of clingy. He started to ask me very nicely if he could go home. I told him that he could go home on Wednesday. He wasn't happy with my answer, but he didn't pack his bags and get upset either. He is improving. There was a little boy who was literally climbing the walls and emitting a high-pitched screech. When Kellen heard him, he started getting wound up and screeching back. He stopped when I asked him to. The little boy came up to Kellen and got very close. Kellen called him "Little Chief" and gave him a hug. We're starting to see the side of Kellen that we truly love. I did not hear a single cuss word all morning...a huge improvement.

I am so curious how things are going to be when we get Kellen back home.

Hospital Ramblings

As I parked my car in the parking garage at Children's Hospital yesterday, I glanced to my left and saw that the car parked next to me had a small cat bouncing around inside. She was really still a kitten...not quite grown into a cat. As I got out of my car it appeared that the kitten was lonely and wanted to play. The windows were shut, so I couldn't pet her, but I tapped my fingers on the glass and played with her for a couple of minutes. It was sad to me to peer inside and see the contents of the car. The owner was either homeless, or temporarily "hospital homeless". It was piled with clothes, kitten crate, and tons of other things. I wondered if the owner dropped everything to stay with her child in the hospital. Maybe this had been going on for weeks or even months. Today if the car is still parked in the same place, I'll see if it has Washington plates...and I'll check on the kitten and make sure she is alright. Like Kellen...I bet she just wants to go home.

When I got up to Kellen's room I looked through the blinds and saw that he was getting dressed. Most of his clothes were in the hospital's washing machine, but he was making do with what he had...and packing up his bag to go home. Again.

Even though he had recently gotten up, he looked so tired. He did seem happy to see me. I went with him to another room where he had "school". He was too tired to really get into the memory games the teacher wanted to play with him. Afterwards, he picked up his bag and yelled "LEAVE!" Now I realize that when he kept saying that the other night, he wasn't insisting that I leave, he was demanding to go home. The inside doors of the unit can all either be pushed open or opened with a quick swipe of an employee's badge. The woman assigned to Kellen and I followed him around the unit for about an hour while he tried every door. We were going around and around in a circle and Kellen was getting more and more upset when he realized that he was not going to be able to open the one door that leads off the unit. That one would remain locked to him.

After awhile I was able to calm him down and we found a bench in a sunny window to sit in. I gave him my cell phone and asked him who he wanted to call. First was a friend I used to work with who Kellen calls "Gloria Hallelujah." She didn't pick up, but Kellen left her a Kellen-type voicemail message which consisted of some fun noises, grunts, and a few words. I'm sure she will know who it's from.

Then he said he wanted to call Bob Hoskins. This is an actor who is in the movie Son of the Mask which Kellen obsesses over with fear. I dialed home and had him talk to D.Q. who told him Bob Hoskins was not there because he was just pretend. No...Scary...Movies. After this call Kellen said he wanted to talk to Shania Twain. I had to pause to think for a moment. How am I going to make this happen? I got a great idea to call one of my good friends who knows Kellen is in the hospital and has been game to talk to him on the phone in the past when Kellen has gotten ahold of my cell phone and randomly pressed the right button on my speed dial.

By this time, there were about four of us hanging out with Kellen waiting to see what would happen, including a man who worked as a hospital volunteer and had just walked onto the unit with bags full of Dick's burgers for the staff. We could only really listen to Kellen's side of the conversation, but I could hear that "Shania" was animatedly talking to him from the other end (probably about meatloaf). Kellen...loved...it.

While Kellen was on the phone I shared with the volunteer that Kellen also had a thing for Dick's burgers and coincidentally his dad was going to be bringing Kellen dinner from Dick's later that afternoon. The volunteer had an idead and quietly asked me what my cell phone number was. When K finished the Shania call, the phone rang. It was "Dick's" calling to take Kellen's order. The volunteer was so perfect. I think he was one of those angels in disguise that we hear about. He asked Kellen if he wanted a cheeseburger and Kellen confirmed that he did...indeed...want a cheeseburger. He asked if Kellen wanted some fries. Confirmed. He asked if Kellen wanted a strawberry shake. Yes. Then he confirmed the order. Then he confirmed it again. Then he told Kellen that his dad would be bringing by the order later that afternoon. Kellen was so content and mesmerised that he was almost lulled to sleep during the call. It was a perfect. Thank God for people like that.

Depression, Anxiety, PDD-NOS, Oh My!

I had a phone conference with Kellen's hospital team today. They seem to agree that Kellen appears to have significant depression as a primary diagnosis. He also has anxiety (duh) and PDD-NOS (hmmm). None of these are really a big surprise. They took him off of his old medicines and put him on a couple of new ones instead...medicines which are intended to stabilize his mood.

I haven't seen him since Tuesday night, so I am looking forward to spending several hours with him in the morning. Well, to be honest with you, it is hard to look forward to spending time with someone who continues to yell at you "LEAVE!" Let's just say I am looking forward to seeing if he is happy to see me tomorrow.

Hanging In

It's difficult to blog right now. There isn't a whole to say...and at the same time there is also far too much to say.

Last night after a very full day at work, I went up to the hospital to visit Kellen. It was really rough on both of us. He really wants to come home. The good news is that the hospital staff have seen the whole range of things that Kellen brings. They've seen him get "stuck". They've seem him grumpy and agitated. They've seen him impulsive. They've seen him anxious. They've even seen him temporarily relaxed, content and humorous.

Oh, how I hope this is worth it.