Painting As Therapy

I'm starting to realize that this "not being able to do things" is affecting Kellen's self-esteem. He hasn't been able to go to church with us for a couple of months. He gets up, takes a shower, gets dressed...but he's just not able to take that last step, which is to get into the car. This shows me that he wants to go to church, but it is still too anxiety producing for him. Every Sunday morning we keep trying, but I see now that we will need to take smaller steps.

This morning we all got ready for church and then Kellen went back to his bedroom and froze. Sweet Husband went ahead to church and I stayed home with Kellen. He wouldn't move, wouldn't talk, and looked depressed. I left him alone for ten minutes or so, then went back and asked him if he wanted to help me paint a chair. He came outside with me and had a fun time painting. He was really very good at it. As his brush went back and forth, I could immediately see that painting was helping him get out of his head and focus on something tangible. He loves to feel grown-up and loves to be able to work and contribute. He even had a small smile on his face as he painted. I would say...painting is very therapeutic.

What I Know For Sure...

For some reason Kellen is struggling this week. I think he might be going through another growth spurt...or maybe it is because I finished writing all-l-l-l about our journey through puberty like it was done, and God and his sense of humor decided I should be kept a bit more humble. I don't know.

Last night he didn't want to go to bed, said he was scared and insisted that I sleep with him. Instead I sat in the family room on the couch and had him lay down with his head on my lap. I covered him with a blanket and sang to him as I did when he was small. As I played with his hair, he started to relax and fall asleep.

What I know for sure is that it is times like this that I learn the most. I learn what I'm made of. I learn what kind of husband I married. I journey deeper into the realization that the more I discover about Kellen, the more he remains a mystery.

I learn how much I love my son... no matter what.

Person Centered Planning

This is an article I wrote a couple of years ago for the Adolescent Health Transition Project:

Our son Kellen is 14 and has significant abilities and disabilities. Our transition story has just begun. It has been exciting over the last few years to see his gifts and talents emerge. We have used the process of Person Centered Planning to help guide and shape his future. Person Centered Planning puts Kellen in the center of his future, which is right where he belongs. After all, it is HIS future.

Person Centered Planning facilitators come to our house where we have a group of significant people in Kellen’s life assembled comfortably around our living room. The facilitators have brought an easel and plenty of colorful markers. The group is there to celebrate Kellen. Who he is, the gifts he brings, the dreams he has. His history, his talents, what works for Kellen and what doesn’t work for Kellen. His support needs, his likes and dislikes.

Since Kellen loves puzzles, we draw him into the process by writing his contributions on construction paper puzzle pieces. As we talk about his likes and dislikes, his supporters draw pictures on the puzzle pieces and Kellen arranges the pieces on a big piece of butcher paper. When we are done with his likes and dislikes map, there is a full page of colorful pictures. Pepperoni pizzas, DVDs, his furry black cat Max, and a cowboy hat signifying country music on the “likes” side. On the “dislikes” side there are pictures of vegetables, steaming hot food, and "tucked in" shirts.

These series of gatherings help us focus on Kellen as an individual. They help us think about what he might like to do for employment and where he might like to live in the future. One of Kellen’s favorite things to do is to organize. He loves to come into the bathroom in the morning and straighten up after the rest of the family. He puts the hairdryer away, puts the wet towels in the laundry basket and pulls the shower curtain across the bathtub. If he doesn’t get a chance to do this in the morning, he will do it after school. If we “mess up” the bathroom, he doesn’t get upset; he just straightens it up again. He seems to enjoy putting chaos back in to order. About a year ago I saw an employment video of a young woman with a developmental disability working at a hospital. She was restocking the exam rooms with gauze pads and other supplies. All of a sudden I thought of Kellen and how he would love to work at a job like that. He could spend his working hours putting chaos in to order for pay!

I feel that part of my job as Kellen’s parent is to help others catch Kellen’s dream. Help them to get to know Kellen so that they can better support him towards his vision of his future. We have done his person centered plan in order to formalize this process. It is a way of grounding us in who Kellen is and showing others how they can support him in where he is going.

Getting Through Puberty (the final chapter)

On one of the Down syndrome list servs that I am on, there once was a discussion(many years back) about Disney characters and how there weren't any with disabilities. One of the parents piped up that she had always thought of Dopey as having Down syndrome. I didn't know whether to laugh or be offended. Everyone knows that Dopey couldn't have Down syndrome, his ears are way too big and he doesn't have the beautiful almond-shaped eyes. Anyhow, living with a teenager going through puberty is like living with all seven of Snow White's dwarfs in one body.

Living through the experience has reinforced some things we've learned through years of life with Kellen:

Choose your battles carefully

Practice letting go

Work as a team with your partner

Other parents are the very best source of information and support

One of my friends who has two boys older than my son and daughter, once told me that when they enter puberty it is like your kids go into a big long tunnel and the only thing you can do is hope and pray while you wait for them to emerge out the other end. I think there is some truth to that. It certainly is a wild ride and parents can't control the outcome. We have just tried to set-up the environment as best we knew how to help support a safe ride to a beautiful, new destination.

p.s. I'm sure my son wishes he lived in the same house with these seven dwarfs:
Flexibility
Understanding
Creativity
Patience
Faith
Hope
Love

Getting Through Puberty (part nine)

Addressing self-care
Getting through puberty seemed like a marathon, and just like a marathon, there was, finally, an end. The hardest part when we were in the thick of it was not knowing when it would end. Would it be six months or six years?

Along with the changes we made to support Kellen, we also made some changes for self-preservation. Kellen's dad and I started to share equally not only Kellen's care, but also the advocacy that we did for Kellen. It was exhausting for me to always be the one talking to or emailing his school team. During some of Kellen's worst weeks we had a designated "parent on call". We looked at our work day and decided who could afford to be called away in case the school called or who could afford to take the day off altogether. We let his teacher know who was the "parent on call" and the other parent was free to actually concentrate at work.

We have a tiny house in our backyard with electricity and heat, but no bathroom. We let our daughter move out there so that she could have a quiet retreat and get an undisturbed night's sleep.

We tried to do nice things for ourselves and take turns getting out with friends on Friday nights. It was good to take an occasional break and remember that there was still a life outside of the tornado of puberty.

Getting Through Puberty (part eight)

Addressing becoming a man
When Kellen started puberty around age thirteen, we started taking a look at how we could support him better. One of the things that I became aware of is that he had many women in his life and hardly any male influence besides his dad. Most of his day was spent with me, his sister, his female teachers and his female paraeducator. I was the one that had always gotten him off to school in the morning and been there for him after school. I was the one who stayed home with him if he was sick or whenever there was a day off from school. This had never seemed like a big deal, but a male influence started to take on a lot more importance at age thirteen.

I remembered back to the time when my older brother was a teenager and would challenge my mom when my dad wasn't around. Kellen was standing up to me as well. We decided to make a major change in sweet husband's work schedule so that he could be home in the mornings to get Kellen off to school. I couldn't believe how much stress this took off of me, and our mother-son relationship. Kellen grew much closer to his dad having this time every morning together. It meant that sweet husband got home much later in the evening, but the benefits were worth it.

When Kellen's current paraeducator decided not to move up from elementary to middle school with him, I took it as an opportunity to request a male para for Kellen. I learned that male paraeducators are in high demand! Kellen was paired with Mr. Campbell, a kindly older gentleman with a British accent and British manners. Mr. Campbell was a real gift to us at this time in Kellen's life. He taught Kellen the phrase, "ladies first" and convinced Kellen that wearing a tie was cool. He would bring an extra tie to school for Kellen and they would dress alike on "twins day". In many ways Mr. Campbell taught Kellen more about what it was to be a man.

We also began to talk to Kellen about being a teenager and becoming a man. We gave him more privileges and worked with him on carrying a wallet and independently paying for things he wanted. He was so proud to stand in line at Costco and buy himself a hotdog and Coke while we watched from afar. We would stay in the car and let him return his DVDs to Blockbuster. He would walk back to the car with a little smirk on his face. It was obvious that these small steps were paying big dividends to his self-esteem and helping him feel more grown up.

Probably one of the biggest consessions we made was to buy him a small electric shaver and letting him shave even though he didn't have anything to shave yet. He was constantly "borrowing" his dad's disposable shavers and sometimes cutting himself. We decided to give in and work with him on learning to shave. This turned out to be a good move on our part.

Just as Kellen is learning to become a man, we are learning to be parents of a young man. These are big steps for all of us.

Getting Through Puberty (part seven)

Addressing privacy and social connections
When Kellen was about to turn thirteen we asked his older sister for her input and advice on teenagers. She felt it was really important that we respect his privacy by knocking on his bedroom door to get permission before entering. We have taken that advice to heart. All teenagers need a private place where they can shut the door and be alone whenever they want. He is allowed to decorate his room in any way he sees fit. Usually this involves lots of calendars with the days crossed off, posters of Spiderman, and once in awhile an art project drawn with markers on his wall. He also has a bulletin board where he has taped up photographs that are important to him.

Kellen seems to have absolutely no concept of modesty. We've been working with him over the last few years about being dressed appropriately (with pants!) when he is out of his bedroom. We also remind him that if he wants to engage in a teenage boys favorite activity, that he needs to be in his bedroom with the door shut. Just recently he wanted help drying off after his shower. I told him that only he was allowed to touch his "private area". He is now fascinated with the phrase "private area" and practices saying it frequently...sigh.

For awhile it seemed that he was spending too much time isolated in his room, but now there seems to be a better balance. We try to make sure that he has enough opportunities for social connections outside of school and we've had to be very intentional about creating those. Unfortunately kids aren't beating on our door for Kellen to go out with them, so we created a teens group in our local area. Usually once a month we plan to go bowling, to a movie, or to a gym. The activities are for the whole family so that we can get to know each other. Hopefully these relationships will continue outside of the formal group as well.

For about a year now Kellen has been a greeter on Sunday mornings at our church. Having this role has helped him feel very good about himself and also has the side benefit that he gets the opportunity to meet lots of people who might normally not approach him.

We hope someday that Kellen will have a special woman in his life. Our family knows just how much love and affection he has to give. She will be a lucky lady!

Getting Through Puberty (part six)

Addressing self-esteem and contribution
Kellen's self-esteem has always been very strong, but it seemed to take a temporary nose-dive during puberty. We have worked on having him feel good about himself by consistently expressing our love for him and telling him how handsome he is. More importantly, we discovered that Kellen takes a lot of pride in contributing and helping others. We give him household chores and we tell him that they are his "jobs" and that his allowance is his "paycheck". He also gets a paycheck when he goes to work with me or helps me do a presentation to other parents. The first time he got a check we took him straight to the bank and cashed it; then took him to buy a DVD. That way he could make the connection between working, getting a paycheck, cashing his paycheck, and buying something he wants.

I've changed my language when I praise him to "nice work" or "nice job". He has started to empty our recycle bins into the garage without being asked and that isn't even a job that we assigned to him as a chore. To me, taking this initiative is success!

Getting Through Puberty (part five)

Addressing medical issues
Whenever there are changes in behavior, we've learned it's a good idea to rule out any possible health or medical issues. Ever since Kellen was a baby, his mood has been largely determined by whether or not he is "backed up" because he has Hirschsprung disease.

We work with his diet and were giving him an over the counter laxative as necessary since he was a toddler. Still, he had occasional bouts of "tummy trouble." Kellen doesn't tell us verbally when he is hurting, but we can usually tell as he gets grumpy and won't eat. Since he loves to eat, when he refuses food, we are clued in that he is definitely backed up.

Just after Kellen's fifteenth birthday, he went from having difficulty with transitions, to literally refusing to move. He didn't want to go to school and when he got there, he wouldn't leave his desk all day and wouldn't come home after school. We didn't know if this was a new puberty "surprise", or something entirely different. Finally, there was a day that he wouldn't sit down, wouldn't walk, and literally stood in the doorway of his classroom all morning, half in and half out. Even though we had recently been to his pediatrician for a check-up, I was positive that there had to be something seriously wrong.

I called Kellen's dad from the school and asked him to leave work, meet us at the school and take Kellen straight to the doctor. I know that sweet husband is not much for strong advocacy, but I begged him to not leave the doctor's office until they had xrayed his colon. Sure enough, they could see in the x-ray that his bowels were full with a large gas bubble trapped behind. He had been in so much pain, but had not been able to verbalize it to us.

Kellen's dad is a nurse and had strong feelings about Kellen not being dependent on a laxative. After that day we had a long conversation about putting Kellen on a daily dose of Miralax indefinitely. I feel that he has the right to feel well and that he had enough trouble dealing with puberty without also having to deal with pain. Miralax is insurance so we won't need to guess whether or not Kellen is backed up. Does it solve all of our problems? No. Addressing Kellen's medical issues are simply a piece of the puzzle that is puberty.

Getting Through Puberty (part four)

Addressing anxiety
Over the last couple of years we have started to realize that Kellen experiences anxiety. We don't know if it is here to stay or just passing through. We don't know how, when or why it started, but gradually anxiety has been interfering with Kellen's life and as a result, our family life.

When Kellen is feeling stressed he reacts in a myriad of ways. He can get really obsessive-compulsive with his actions and behaviors, he can be very loud or talk very fast and unintelligibly, he can act impulsively, he will tense up all of his muscles, and if worse comes to worse, he will shut down entirely. When he shuts down he will not try to communicate and he won't be able to move. Because of some of these behaviors, we've had some professionals wondering if Kellen might have autism. I don't know whether he does or doesn't, but I do know that I'm not really interested in getting him another "label" right now.

Kellen can get very anxious days after watching a scary movie trailer or a scary movie. He can become anxious days after hearing a loud, unexpected noise (fire alarm, glass breaking, air horn). Since there is such a delay between the event and Kellen's stress, sometimes it is hard to figure out the connection. Also, airports, bus travel, and other encounters with public transportation make him very nervous.

We've learned that Kellen needs a support person, point person, or "go-to" person during high stress times. We let him choose who it will be, and it can only be one person. It doesn't work if both his dad and I are trying to play this role at the same time. His dad calls this person Kellen's "pony". Just like at the race track when the nervous and overexcited thoroughbreds have a lead pony escort them to the starting gate in order to keep them calm, so Kellen needs one of us to provide this support. Sometimes it helps if he can hold onto our arm or hold our hand. What is interesting to me is that if I am holding his hand and a loud, unexpected noise happens, sometimes he won't even react negatively. We've also learned to talk to him about what to expect beforehand, and if an unexpected, loud noise happens, we tell him what the noise was and that it is alright.

We looked long and hard at his school and classroom placement and what supports he needed at school. We had a consultant observe him at school and talk to his teachers. Together we decided to move him from general ed to self-contained classroom for 8th grade. During his 9th grade year we drove him to and from school instead of expecting him to ride the school bus. We were able to check in with his teacher before school when we dropped him off and after school when we picked him up.

After working on all of the above, we eventually began a trial of Zoloft last June. It seems to be helping Kellen quite a bit. He is not nearly so anxious, the obsessive-compulsive behavior is all but gone and he is able to transition and cooperate. Not to mention his mood has improved to the point where I can no longer describe him as Grumpy.

Getting Through Puberty (part three)

Addressing sleep
Kellen has always needed a lot of sleep, but when puberty hit, that was all he wanted to do. The weird thing was he was so tired, but he didn't want to go to bed. Bedtime was becoming one of those issues where he dug his heels in and wouldn't budge.

My philosophy in life is, "When things get rough, change it up".

Here are a few changes we made to address Kellen's tiredness:

Since there were evenings when he was so tired, he couldn't even eat dinner, I started offering him dinner after school instead.

We started giving him Melatonin about an hour before we wanted him to go to bed. This is an over the counter supplement which the bottle says, "Helps establish normal sleep patterns". Melatonin helps Kellen get nice and sleepy.

We decided to try getting Kellen to bed at 6pm. This seems ridiculously early for a teenager, but it really helped him to get more sleep hours in. This meant that we didn't take him anywhere in the evenings. If we had a meeting or family event to attend, we either skipped it or just one parent went. His behavior was atrocious when he was tired, so evenings were better spent at home.

There were evenings when he fought bedtime so much...again...we had to change it up. We'd give him Melatonin, turn out all the lights in the family room. Turn off the television and hide the remote, shut the door, and just let him fall asleep on the couch. After he went to sleep, we'd either lug him to his room, or just let him spend the night on the couch.

We also instituted "Pajama Day Saturday". Saturday's he could stay home all day in his pajamas and nothing would be expected of him. If worse came to worse, he was also allowed to take a "Mental Health Day" and stay home from school to sleep.

Reading this over it seems like we did not have much of a life during this time period. Fortunately, most of these changes were only needed temporarily.

Getting Through Puberty (part two)

One thing that helped me cope with those early teen years was to picture Kellen's behavior like that of a rooster. Part of his becoming a young man included posturing, squawking, trying out a little aggression, strutting, etc. When I pictured it that way, it became natural and even funny (although not in a disrespectful way). Inside we could laugh, but on the outside we took him very seriously. His body and hormones were telling him that it was time to stretch his wings and see what he was made of.

Getting Through Puberty (part one)

Kellen has always had a very intense personality but right around his thirteenth birthday, things took a difficult turn. At work, I finally understood what those desperate phone calls from parents of teens with disabilities were all about.

It seemed like he was in a bad mood 50% of the time, a manic mood about 25% of the time and we were lucky if he would cooperate with us 10% of the time. It was exasperating. He needed 10-12 hours of sleep a night and if he wasn't able to get this, he was even more uncooperative. Unfortunately he started to really fight going to bed at night, and fight getting up in the morning. Of course, in middle school the bus came at 7:30am instead of 9:00am as he was used in sixth grade.

To top it off, he started to exhibit a lot of anxiety when at school or otherwise out in public. Oh...and a couple of other things: We weren't allowed to hug him or kiss him. We weren't allowed to take his picture (in fact, for a whole year the only decent picture I could take of him was when he fell asleep on the couch). At school he was slapping other students on the behind and practicing his four letter words. It stresses me out to type this, so you can imagine how stressful it was for our family to live through!

Over the last three years we have made several changes in order to support Kellen through this transition. I'll share some of those in upcoming posts.