Sleeping Bags Outside

Katherine is starting to live life again. She has been slowly regaining her interest in the world around her and in participating in it. Often when Katherine is doing well, she playacts in a way that shows use of an imagination that, I’m told, is rare in kids with her level of autism. She is also capable of carrying out some very elaborate plans to pursue her idea. Last weekend yielded a fun example.

It began with Katherine asking for “sleeping bags outside”. Katherine is a huge Mickey & Friends fan and this is a reference to a Mickey Mouse Clubhouse episode called “Minnie’s Pajama Party”. Minnie plans an indoor pajama party but their friend the Giant crashes the party. He is too big to attend an indoor sleepover so they all decide to sleep outside so the Giant can join them. The whole group then sleeps in sleeping bags outside of the Clubhouse.

“Sleeping bags outside” is something that Katherine has asked to do off and on for months but her condition has finally improved enough (after months of medication changes) to give her the where-with-all to pursue the idea herself. So, undeterred by the 14 degree wind chill, Katherine put on her pajamas and began gathering everything she felt necessary for sleeping outside.

These bursts of elaborate playacting so rare, and actually non-existent in the last year, that we hate to discourage her. We decided to let her play it through and figure out for herself that it was too cold to sleep outside.

So she bustled about getting her owl sleeping bag, ladybug pillow pet, “big” Minnie, “fairies blanket”, Jamberry book, etc. She even found a way to reach behind her vanity to unplug her CD player and lamp. She doesn’t understand that she needs a wall outlet for them to work. Finally, with her bedtime gear piled high in her arms, she marched out to the front yard and began setting up camp (click on photo to enlarge).

With me watching over her and responding to verbal requests for help, Katherine got her sleeping gear positioned and burrowed down in her sleeping bag. It was at this point that I realized that she might be too clever for my plan to work. She recognized immediately that it was too cold for how she was outfitted. But instead of giving up the idea, she went right back in the house for more blankets!

I helped her spread out her additional blankets and read her the Jamberry book but then, reluctantly, pulled the plug on her adventure. With this many blankets it was going to take her an hour or more to get too cold and, let’s face it, I was just not willing to stay outside with her that long. Plus, what if she just kept adding more blankets?!

She was sorely disappointed and cried off and on for quite a while after we got her inside. Eventually we were able to divert her attention with a movie and then tuck her into her usual cozy warm bed. I hope that she enjoyed the fun part enough to balance out the disappointment at the end. And we’ll certainly make a point of making sure she gets “sleeping bags outside” when summer rolls around again.

Doing Better

After some extra hard times in December and early January, Katherine is doing better. Things are not all sunshine and roses and I dare not hope that things will stay this good but this post will only be about the good stuff.

Katherine is ticcing far less. We’ve had no long intense ticcing clusters in the last week. There have even been fewer isolated tics and most of those are facial-only. So there is some improvement in her Tourette’s and/or her anxiety which are the two main factors in her ticcing.

In addition to that she is functioning at a higher level (less autistic) than we’ve seen in well over a year.

She is spending time all over the house instead of staying in her craft/therapy room. She is carrying toys from room to room and even playing with them. She is an 8-yr-old playing with baby and toddler toys but just playing appropriately is an accomplishment for her. She and Jonathan are going through a play-doh phase. She has made some really imaginative little things including a snowman and an “angel” who has its arm (or wing) around the snowman’s shoulders. Art is her primary means of expression and the best means we have of knowing what is going on inside her head and it really warms my heart to see her making an “angel” showing affection to a snowman. You can click on the image to see it larger.

Katherine is also showing care for 2-yr-old Jonathan. She has been bringing toys to his room or crib. And last week, every time we went in the car she would gather up an armload of toys to take along. At first we thought she was bringing them for herself but then she would put them on the floor in front of Jonathan’s car seat where she couldn’t possibly get to them from her seat.

She is eating a few meals at the table with the family and even feeding herself some of the time.

We started to teach her new vocabulary again and started by picking up where she had left off when we had to discontinue new teaching over a year ago. I am happy to report that she is not only doing well enough to begin learning new concepts again but she retained everything that she had been working on when we quit, which is far more than we had hoped for.

A side note: I have to wonder why we’re seeing such a big improvement right now. Without belaboring the point, I’ll say that my fundamental faith in God and Jesus are as strong as ever but I’ve been struggling with the topic of prayer. I’m slowly feeling my way back into that aspect of my relationship with God and I have to wonder if the recent huge increase in the number of people praying for us (response to the video I posted) is connected to Katherine’s improvement.

Katherine visits Santa

Katherine loves Christmas. Loves it! She loves to decorate the tree. She loves to decorate sugar cookies. She loves to decorate gingerbread houses, trains, Christmas trees and villages. Yes, they do make gingerbread kits in all those varieties! She loves Christmas carols and hanging stockings. And she even loves to visit Santa.

So about a week before Christmas, as I was putting her to bed, she says "go see Santa". Out-of-context requests like that are extremely rare so I knew it must be very important to her.

The next day I called Bass Pro Shop to find out their "Santa hours". She had been to see Santa there the year before (when anxiety issues were just beginning). I needed to find a time when I could take a second adult because trying to manage Katherine and 2-year-old Jonathan together out in public is risking disaster. I ended up choosing Friday morning. I hoped that most people would have already done their Santa visit and that if we arrived at opening that we would avoid most of the line.

Because this is a child with such severe anxiety that she has had trouble going almost anywhere, I checked with her a few times during the week to see if she still wanted to go. Each time I asked, it was "yes Santa!" . . . until it was time to get in the car to go. I was concerned but not surprised. Anxiety has kept her from many of her favorite activities this year. But at that point I fibbed to her just to get her in the car. "Okay Katherine, let's just go for a ride." Her brothers were ready to go and her cousins and grandparents were on hand to go along too. We could have left her behind but I knew it was the anxiety talking and that she might be able to push past it if we actually got her there.

So Allison, Katherine's morning therapy implementer, helped me get her to the car and brought the picture they had been making for Santa that morning. And magically, as soon as I pull into parking spot, Katherine took off her seatbelt and sat poised to get out of the car. When the van door slid open, she just hopped right out! It may seem that I am belaboring this point but it was really amazing! 

Allison hopped out behind her, felt in step with Katherine, and handed her the picture for Santa as she headed straight into the building. I got Jonathan out of his car seat and hustled to catch up. Again, completely amazed by this little girl who always walks at a snail's pace.

Things got dicier inside. We did not make our goal of arriving at opening and there was an enormous line for Santa. And that was just the 10:30 line. We were given a "fast pass" card and told that we couldn't even get in line until 11:00. It is actually a great system because people can walk around the store instead of standing in line for an hour. But I knew from past experience that Katherine's success could very easily be fleeting. It would not be the first time she started off strong and then fell to pieces.

So I handed Jonathan off to my parents and the cousins and went to find out if they would make accommodations for a special needs child. I hate doing that and when autism was the only problem I almost never had to. The "fast pass" attendant called a manager who was very nice about working with us. It was wonderful and terrible all at the same time. The big increase in intensity of Katherine's special needs have caused a big increase in my stress level over the past year and the minute someone shows me unexpected kindness, the dam breaks and pent up emotions come flooding out. I hate crying in front of 75 strangers!

The manager walked us straight to the front of the line through the exit avenue. Katherine, who had waited patiently thus far, strode ahead confidently as she realized where we were going, the picture she had made for Santa clutched securely in her little hands. We had to waylay her while the child already on Santa's lap finished up and the manager explained to the staff and the next people in line. And then she got her chance. She sat on Santa's lap, gave him her picture and had hers taken. She was happy! Mission accomplished!

Katherine didn't bring a list and she didn't whisper a Christmas wish into that snowy white hair. But those are things she doesn't know anything about so, as far as she was concerned, her visit to Santa was complete. I missed seeing Jonathan's first time visiting Santa but he got to enjoy that experience with his brother, grandparents and cousins. There are many times when Matt and I miss important moments with the boys but we are learning to celebrate the ones we do get to share. It was an emotionally exhausting visit for me but well worth it the result. Everyone got to see Santa and there were no anxiety attacks or tic clusters. All in all it was a successful trip.

Big Bedtime Tic Cluster

Please read the following before going to the video link. Unless, of course, you have read it before.

Before watching video of Katherine please prepare yourself to think what she is thinking and feel what she is feeling. What if that were happening to you? Similarly, try to put yourself in our shoes as her parents. What if that were your child? Or what if that were happening to your existing son or daughter?

MOST IMPORTANTLY: before you watch any videos you should be willing to trust that our assessments of her are correct. She has the complete attention of very knowledgable adults for several hours every day. During those times, almost everything she does is monitored and analyzed. Amongst those people are people with years of education and experience in special education, autism, and behavioral analysis. They include a number of people who have worked with her extensively since she was 2.5 years old. A pediatric neurologist has looked at many examples of what is happening to her and diagnosed her with Tourettes. THESE ARE NOT TANTRUMS. THEY ARE TICS. They are neurological misfirings. I am happy to answer any doubts or concerns!

http://www.dropshots.com/rwigdahl#date/2012-01-03/21:13:02
The guest password is katiebug

A Very Ticcy Day . . .

Please read the following before going to the video link.

Before watching video of Katherine please prepare yourself to think what she is thinking and feel what she is feeling. What if that were happening to you? Similarly, try to put yourself in our shoes as her parents. What if that were your child? Or what if that were happening to your existing son or daughter?

MOST IMPORTANTLY: before you watch any videos you should be willing to trust that our assessments of her are correct. She has the complete attention of very knowledgable adults for several hours every day. During those times, almost everything she does is monitored and analyzed. Amongst those people are people with years of education and experience in special education, autism, and behavioral analysis. They include a number of people who have worked with her extensively since she was 2.5 years old. A pediatric neurologist has looked at many examples of what is happening to her and diagnosed her with Tourettes. THESE ARE NOT TANTRUMS. THEY ARE TICS. They are neurological misfirings. I am happy to answer any doubts or concerns!

That being said here is the link. http://www.dropshots.com/rwigdahl#date/2011-12-26/17:10:26
The guest password is katiebug. I will post descriptions of individual videos with the video instead of on the blog.

The Moving Target: Tourettes

Katherine's condition continued to change and some of the appointments we had been waiting for began to happen. In January, she had her EEG which only showed that their was no seizure activity during the EEG. In February, we finally got in to see a pediatric neurologist and we finally got a diagnosis. Katherine had developed Tourettes.

We were so glad to finally know what we were dealing with! But a Tourettes diagnosis was also very unwelcome news. It was yet one more poorly understood and incurable neurological condition to deal with.

The neurologist told us to research everything we could about Tourettes and then said to remember that it could all be different for a child with autism. He told us that Tourettes often gets worse up until around age 12. We couldn't believe it. Seriously! Could this really get even worse?! For the next 4.5 years?! And that Tourettes symptoms often improved during the teen years and sometimes disappeared by the early 20s. So at least we had that to hold on to!

We left that appointment without any prescriptions. Life was hard but we were managing, at least that's what we told ourselves. We were afraid of medication because Katherine would be unable to give us feedback on what effects she was experiencing so we were resolved to go without it as long as we could.

As spring arrived, things continued to get worse. We had learned how to manage better as a family. We were finding more balance between Katherine's needs and everyone else's needs but she was increasingly disabled. Her tics became more and more frequent and more and more intense. Her hands were covered with scratches from where she had raked the nails of one hand over the back of the other hand. She smashed one foot into the other foot as hard as she could so often that her feet were bright red all day every day. Her little face contorted and spasmed. She screamed at top volume and pitch such that her throat had to feel absolutely raw. Her own body was torturing her well over a hundred times a day.

In desperation, we called her neurologist and, after discussing the situation with him, decided to start her on guanfacine. Oddly enough, there are no medications developed to help Tourettes. All the medications used to reduce Tourettes symptoms were originally developed for some other purpose but have a side effect of reducing ticcing. Unfortunately tic reduction is not their only side-effect.

We started her on 1 mg on April 1st, increased her dose another 1 mg on April 27th, May 10th and the beginning of June. Guanfacine is a long-acting drug and it would take about 10 to 14 days for each change of dosage to stablize into it's final effect. With each new dose she would be super groggy for a few days and then as the grogginess decreased her ticcing would begin to decrease.  By day 4 or 5 she had over 90% reduction in tics. The results were so dramatic it was like she was a completely different child. She was so mentally present and interactive and joyful. It was like she had been released from prison, and in a very real way, she had been.

After a few days of freedom the ticcing and grogginess would start to creep back up. We had to increase her dose 3 more times throughout the spring and each time the pattern would repeat itself. So the entire spring was a roller coaster of grogginess and variable tic levels. By the time the final dose stabilized, we had about a 40% reduction in tics and a huge amount of grogginess. She was napping every day and it had been 4.5 years since she had napped. But a sleepy sissy was far better than a ticcing sissy for her and for us.

The Moving Target: Before Diagnosis

Since Katherine's Tourettes began she has been a moving target. Before she began taking meds, the tics were continually getting worse or there were new tics or new triggers for old tics. And we were constantly looking for new and better ways to help her.

When Katherine's only problem was autism, her existence was pretty stable. Her sensory needs stayed pretty much the same. She liked to spin and look at things from a very short distance. Her language skills changed gradually and completely in conjunction with what we were teaching her. Her motor skills were fantastic and her food tastes pretty predictable. Pretty much any significant changes in her could be traced to her environment and managed with behavioral teaching.

But after her additional neurological issues began to develop in the June of 2010, that was no longer the case. Her Tourettes symptoms started small and we had no idea what they were. Her first tics were just mouth and arm movements. As summer turned to fall, her tics became much more dramatic. By mid-September her tics were already substantially more intense than what most people with Tourettes ever experience. We continued to try to manage it behaviorally. We didn't know it was a medical issue. We didn't know it was Tourettes and, as with most tics, her movements seemed intentional and often occurred at times that reinforced that perception.

The behavioral techniques weren't working. We ignored the ticcing and rewarded her for not-ticcing. We tried using successive approximation. We finally, in late October, in desperation, we started giving her consequences for ticcing. We didn't know that the movements were involuntary! Oh that poor little girl! Her own body has turned against her in very intense ways. She must have been frightened and confused. And then the people she trusted and counted on to help her began punishing her for doing the very things she already didn't want to do as if the tics themselves were not punishment enough.

She began to lash out at us. When tics come in clusters, she would tic for 5 to 10 seconds and then have 1 to 2 seconds of reprieve. She had control of her body during those two seconds and she began to turn toward the closest adult such that her blows against her own body were hitting that adult too. Inside she must have been crying out. Why aren't you helping me?! Why is this happening to me?! Her tics were things that would badly frighten ANY child. How much worse must it be for a child who doesn't have the language skills to take understand an explanation or to be able to express her feelings about what was happening to her?

By December, we began to see that the tics were involuntary. That she hated ticcing. And we began to comfort her instead of punishing her. She was still miserable, the poor little thing, but at least we were now on her side. She responded almost immediately by making every effort not to hit or kick other people.

We continued to limp through the rest of the year without any answers. She had blood work and her first appointment in a set of referrals to new specialists but they yielded nothing.  She was miserable and so was our family. Life was revolving around Katherine in a way that it never had before. Managing Katherine's tics was the relentless purpose of our existence. We still managed to go through most of the motions of a normal family. We had to try to live as normal a life as possible under the circumstances but the burden was enormous and pretending things were okay became harder and harder.