It's All Right to Cry

The lyrics to one of my favorite songs from "Sesame St"
"It's all right to cry,
Crying gets the sad out of you.
It's all right to cry,
It might make you feel better."

I have recently learned through work trainings, books, life experience, etc that as a culture, crying isn't necessarily "welcome," particularly with small children. That the goal tends to be "stop crying." Granted if the child is crying so hard that he or she can't breathe, redirection is likely encouraged! If not, it's all right to cry!!!!

However, I'm learning a new direction other than getting the child to "stop crying." I'm learning to encourage crying, or at least understand why they are crying! Sometimes the reason for crying can surprise you..... A couple of examples.

A child in my class had a hard morning-waiting for turn with a toy he desperately wanted, falling down outside, etc. So when it came time for lunch, and he was waiting in line for his colored lunch tray, he didn't get the color he wanted, the tears started to come. I knew that he didn't care that much about the color tray he got, it was just one more disappointment. I took him out in the hallway, gave him a hug and simply said, "You've had a hard day, haven't you?" We talked for just a minute or two, then he was ready to go back to lunch get his tray, eat lunch, etc.

A young girl fell down outside and scraped her hand. Truthfully, the scrape was very minor from a factual standpoint. From an emotional standpoint though, the scrape was a lot worse. She begged for a bandaid yet every time I got near her hand with a bandaid, she'd cry and scream. I suggested she close her eyes, she said, "No, because I'll still feel it!!!!" I gently embraced her, told her I knew she was scared, that she thought it would hurt, and especially that it was Ok to be scared. That she didn't need to have a bandaid. Feeling understood she stopped crying a couple minutes later, and let me put the bandaid on. I asked her, "Do you want to cry some more? It's OK, if you need to." She smiled, said no, and went off to play.

In conclusion, it's all right to cry! It's all right to encourage crying. Remember that the cause for tears may often be just the tip of frustrations that can seem huge to a child. Acknowledge how they feel.
These tips work for adults as well!!!!

Brighter In the Morning

"Things will seem brighter in the morning." I don't know/remember when I first heard/read this statement, and it doesn't really matter. But.....in the midst of some of the most (till now-hence the absence of blogging) "challenging" times in my life I find myself repeating this to myself more and more. Reminding myself that it's usually not worth distressing about/trying to solve until morning because SO much of the time, things truly do seem, "Brighter in the Morning."

My Advice to Another with a Brain Injury

The other day as I was walking to work, I was thinking, "If were to meet another person with a brain injury and on the off-chance that they asked me for advice/what had helped me the most, what would I tell them?" I came up with 3 things, and actually, they all complement each other.

#1: Get a good night sleep, consistently. Granted, this is generally NOT easy for someone with a brain injury to accomplish, but when it can be done it pays enormous dividends! On days when I didn't sleep well, I wake up tired, and somewhat slump through the day thinking, "How soon can I go to bed tonight?' Days when I did sleep well, I'm happier and I get more done.

#2: Get regular exercise/physical activity. Regular exercise benefits my physical and mental health and well-being. I look better, I have mor energy, I'm happier with how I look. I'm less stressed and frustrated when I can release my emotions through exercise. Most importantly, I sleep SO much better on nights when I exercised during the day. I sleep deeper and longer.

#3: Being grateful especially for the small things in life. On my other blog, I started doing a post every day of things I was grateful for that day and it has made a huge difference for me. There are parts of life that I may wish were different, less challenging, etc but when I look back on all the good from that day, I find myself thinking, "How can I be upset with so much good in my life?"

How to do these things- as I don't believe any of them are easy to do.......
1-develop a sleep routine that works for you and stick to it. Get exercise/activity during the day
2-Find some exercise/activity that you enjoy doing. On days when life is full, make it a game to see how much time you can make for exercise that day. Save a favorite show/song to watch/listen to while you exercise.
3-Make/keep a list of all that you are grateful for so you don't forget! Look for the good. If you look for it, you'll find it!

Rembering the Good Things- A Useful Strategy

When my emotions have been up and down, (as they have been of late) repeatedly a strategy has been of use to me. Remembering the good things/things I am grateful for and then making a record of it. For me, it has been very important to have a record of it because otherwise I forget, and when there IS a record, I can look back on it/read it during the more trying times. It can be recorded in a notebook, journal, blog, camera/picture, etc. Whatever is easiest for you.

It has also been helpful because it helps me put things in perspective- was one event, disagreement, awkward moment, etc really as important with all the other good things going on around it? It reminds me to let stuff go and look at the bigger picture (NOTE: that is not to say that I have mastered the art of "letting go" of things. I haven't. But it helps!)

It also makes me appreciate the small things that much more. The other night I had dinner at my parents house and my Mom made cheese quesadillas for dinner (I helped). It was good but after writing it down, remembering how I felt being with my family, how good the food was, I appreciated it that much more!

This is not just a strategy for the sunny days, but for ANY day, challenging or not. On the days when I want to quit, scream, etc. I try to make being grateful into a "game" How many things can I find to be grateful for today- often I can find a lot, if I choose to look for it!

Not to make light of life's heartbreaks, challenges, disappointments, etc. Trust me. I have been there. But while we can't choose everything in life, we can choose how we feel. And choosing to feel grateful and appreciative has helped me a LOT.

Live. Laugh. Love. Learn. And then make a record of it!

Questions and Answers

Here's a sampling of questions I have been asked over the years regarding my brain injury....



Why were you not diagnosed until you 21?

As has been previously mentioned, the brain injury occurred between 0-2 years of age, the diagnosis not until age 21. There are two main reasons for that (1)Brain injury/special education was not as recognized/respected as it is today. My Mom took me to the dr many times between 0-5 yrs but there was always an explanation for my behavior. I was the baby of the family, I was just shy, I would catch up, etc. (2) I didn't want "help" My parents got me involved in resource classes, math tutors, speech therapy, etc. but I fought all of it. I already struggled socially and didn't want to feel "different" any more than I already did and I didn't want to be "fixed". When I did finally find a dr and treatment center (Dr Nilsson at the Neurodevelopment Center) I felt ready because I was older and more mature but also because I felt the focus was on the "Claire the person" and not on "fixing Claire."



What was your reaction to the diagnosis?

My initial reaction was RELIEF!!! I had been carrying around a LOT of guilt for many years. Since I didn't know the "logic" for my behavior, I assumed that if I just tried harder I wouldn't have challenges and so the challenges were mainly because I just wasn't trying hard enough. Not true. My 2nd thought was that if I had made it 21 years with this challenge, I wanted to use my experiences to help other people- the main reason why I pursued special education.



Do you wish you had been diagnosed sooner?

Honestly, yes. Particularly regarding high school and beginning college experiences I wish I had known more then about how to get along in social setting and just developing basic life skills. BUT because I didn't know I had challenges, I thought I could do anything! And the good things that have happened because of it far outweigh "what might have been" So I don't dwell on it, I just try to celebrate what I do know.



What has been the most challenging and the most helpful?

The most challenging has been dealing with "neurogenic irritability"- having difficulty controlling my emotions at times, having a lower threshold for stress and anxiety, and ultimately the ways that these have effected my life. The most helpful medically wise has been sessions of Neurofeedback that have retrained my brain waves and ultimately helped to function more smoothly. The biggest help emotionally/people wise: People who genuinely have listened to me when I share my challenges and triumphs and tried to understand the "logic" of my behavior.



If there are any more questions you would like to ask me- please feel free to leave them in the comments section! Your feedback helps to improve the blog. Thanks!!!

Laughing at Myself

Recently I relearned the importance of being able to laugh at oneself. I am by no means an expert at this- I have habits of getting embarrassed to easily and then holdig on to it longer than is necessary. BUT the times when I can laugh at myself, I feel more spring in my step, I smile more because I have something funny to laugh about and it gives me new eyes/perspective for a situation.

As an example of something to laugh about it, here is one of recent "adventures"..... Enjoy a good laugh at my expense, I don't mind!!!

THIS is Why I don't make Jello
I have made jello approximately 3 times in the past 10 years. So when I recently signed up to bring a jello salad to a church function, I tried to seek out info from more experienced jello makers. But I couldn't reach my Mom or sisters to ask for advice. I had to go it alone.

All went pretty well until the 2 minute boiling period when the ruby red liquid spilled onto the burner and stovetop. (My mom told me later that she doesn't let it keep boiling, she just takes it off the stove and stirs. And well..... now I know....) However the boiling water/jello mix caused smoke which caused the smoke alarm to go off for the first time. Yes, the first time.

I did get the jello poured in the dripper pan but not without spilling more on the white countertops. I put in the fridge and busied myself with other tasks when the fire alarm went off. Again. I thought, "What the.....?" Then I turned around and saw 4-5 inch flames shooting from the stovetop burner.
I had forgotten to turn off the burner so the spilled liquid had dried in lumps and were now flaming. Nice. I poured baking soda and put out the fire. (Turns out baking soda really does work to put out a fire!) Opened doors, windows and turned on fans. Still have not cleaned off the burner because of the intense mess that I made. Maybe if I stall long enough it'll clean itself???

Was this my finest hour? Not necessarily, but it has quickly become a favorite story about myself because as embarrassing as it may be, WHO makes jello and consecutively starts a fire??? So even though laughing at yourself may not come naturally, do it anyway. It pays off!!!
What recent life adventures can YOU find to laugh about?

To Fear- or Not to Fear???

In preparing these blog posts, I often go back through past journal entries and e-mails. In this case, I came upon a conversation I had with the day after I had lost my job. At this point, I was halfway through to getting my teaching license. But I thought that if I had lost a teaching job again, maybe it would be best if I just called it quits! Anyway, the recounting as follows:

"Today I was talking with "Elizabeth" and I told her that I was thinking of quitting the licensure program. She asked, 'WHY- when you are already halfway through?!?!' The only reason I could give her was 'Because I'm scared' And is fear really a good enough reason???" (Thanks, Elizabeth for such a simple, yet clear question!)

Goals and dreams are not identical for anyone who has sustained a brain injury,or for people in general. And that's a good thing. If we all had similar circumstances and dreams life would be a lot more dull! But I believe the idea "is fear really a good enough reason?" Can be applied to all in a variety of situations. Besides, who wants to live with the thought of "what if, what if I had tried?"

Something to think about.

A Lesson in Feedback

Shortly after I lost my job I learned a valuable lesson about feedback. In discussing the events with a good friend, the question was posed, "Did you get feedback?" I was somewhat defensive in my response of, "Well, of course I did! And I did, to a degree. I had asked questions of my supervisor when I didn't think things had gone well. Questions such as, "I don't think that went well. What do you think? What should I fix?" However, it's not enough just to get feedback, you also need to SEEK feedback. Seek feedback by asking questions such as, "Where do you think I could improve? What would you like me to work on?" In essence, find trouble before trouble finds you! I'm not saying that this kind of feedback is easy to seek or to accept. But the value of having that kind of feedback, for me, cannot be overstated!



Seeking feedback also means getting help. When I started my current job, I set my expectations too high and wanted to do everything perfectly. Not possible! Because my expectations were so high, I rarely asked for help, assuming that I should have been able to figure it out on my own and I was afraid to admit my shortcomings. However, since I never asked for help, I never improved and nearly quit my job! Thankfully, as I was exploring my options, my employers wanted to see me be successful and succeed so they allowed me to work alongside an experienced teacher for the rest of the school year, so I could learn what it was I was supposed to be doing! This was a move that I will always be grateful for, one that perpetuated further success.....

Dreams Come True- A Lesson in Resilience

So, to pick up where the last blog left off..... Although I had a BS degree, I had no teaching license, making it very difficult to get a decent paying job. So I ended up going back to school for my license. I never planned to go back to school, I was motivated mostly out of necessity...... I also needed a job to pay for school so I was fortunate to find a job as an aide in special education classroom working with students grades 4-6. I enjoyed it and ultimately learned a lot, but my skills were not where they needed to be by the end of the year and I learned that the school would not be renewing my contract.



Much like with student teaching, this was an unexpected blow to me. It felt like I had "failed" again, (wasn't one time enough?) and I wanted to quit. It did not seem fair at all that I was making a new start again. I had a sense of depression that I had not known before; where I didn't really care about eating, my friends, doing things I enjoyed. I wanted to care about those things, I just couldn't quite do it. Nighttime was the hardest because I felt like, "Well, I made it through this day but when I go to bed then tomorrow begins and then what????"



There were things that helped,though. I got encouragement from a good friend to get some exercise and though exercise was the last thing I wanted to do at the time (seriously) eventually I saw logic and a long walk really did help! Babysitting my sister's 2 children was also effective because it gave me something to do, a need to fill, and something that I really wanted to do.



Coincidentally, the same day I lost my job I ran into a friend who informed that they were hiring at her work, an education setting different from a public school setting. Again, a step in resiliency was needed. A public school setting had been my "dream" but dreams change, and ultimately this one was for the best! This was the setting where I am currently employed but that one almost didn't pan out either.... Thankfully, I learned some important lessons along the way that I am still applying today!

Dreams Come True- A Lesson in Gratitude

Dream #2- Being a Teacher



I don't know that I'd ever considered another profession other than teaching. Nothing else quite made as much sense to me even when I was young.



There was an interesting road that led up to my acceptance into the education program for my B.S. degree and subsequently to the student teaching semester. (More about that another time.) But finally the semester arrived. I had lots of nerves about student teaching but I also felt I'd had a successful pre-student teaching semester and there was a lot I was excited about. Especially having been a child with disabilities I wanted SO much to use my experiences to help other children.



About 2 weeks or so into the program I was informed that the program had "concerns" about me and didn't know if I could/would pass student teaching. This was a shock to my system and so began what felt like a living nightmare; trying to do the day-to-day requirements and at the same time trying to "save" my teaching career. It wasn't for lack of trying or necessarily lack of skill. But the brain injury was a factor. In a classroom of approx 25 students on my own it was very hard for me to stay focused and not get overwhelmed and "shut down." And there was only so much I could do to offset the consequences of the brain injury.



I rarely slept more than 5 hrs a night even with sleep aids and I was so distressed that I greeted each new day by throwing up. Lovely. 3 weeks later when I was informed that I was failing student teaching and it was reccomended that I leave the program; it was a relief to be done with student teaching!



However, while I was relieved to be done with teaching and I did have a back-up plan (I already had plans to teach English abroad for a year) there was still a feeling like the bottom had fallen out from under me, like my promise for the future was gone. I would still get my BS degree but no teaching licensce, which is crucial to get a good teaching job!



When I think about a lesson from this experience, what comes to mind foremost is gratitude. Despite a huge bump in the road I still had much to be grateful for! Even if I didnt' fully know it at the time! I now had more time during my last semester at school. I had more time to spend with my Grandma and finish writing her life history. (Coincidentally she passed away while I was teaching abroad). I had more time to spend with my family and friends. Throughout the whole semester, my rommmates were fantastic, consistently supporting me with and without my asking. My previous campus job took me back immediately so I had something to occupy my time and wasn't financially distressed. I was free from the stress of student teaching!



Bumps in the road are inevitable. Bumps can be really painful! But I have found that being grateful while negotiating the bumps helps make the ride a little smoother and it helps you create good memories during an otherwise undesirable time you would not have chosen.



Today I do enjoy a teaching license and an enjoyable and successful teaching job. But before I could get to that point, I was let go from another teaching position, and then it nearly happened again. I wanted to quit many, many times and at times life seemed so unfair. But it's all good now! Stay tuned for how it got to this point......

Dreams Come True- A Lesson in Taking Risks

I believe that dreams are universal to human nature. The act of dreaming, planning, growing, achieving, etc. can be soothing and rewarding to the soul.

I've had dreams of my own, as well. Here is a sampling of those from my teenage/young adult years.



-Play on the school basketball team/do something athletically coordinated

-Have a group of friends

-Be a Teacher

-Get a 4.0

I decided to break up this blog idea into 4 posts, one for each dream, and a lesson to go along with it. Here is the first one.....

In middle school I really wanted to get into sports like my peers. I was tired of being the last kid chosen for teams, tired of getting "special help" when I couldn't do the skills. I wanted to feel really "good" at something athletically coordinated. I also struggled socially and REALLY wanted to be part of a team, thinking that would help me to fit in. The sport I chose was basketball and I planned to try out for the middle school team. For weeks I practiced with my brother- running, passing, dribbling, shooting. I got basketball shoes and the right clothes. But when the tryouts came I didn't even make it past the first day. Perhaps it had something to do with not being able to make a free throw..... I still liked to play, and I did, off and on, but basically put it aside.

Fast forward about 13 years. I had been doing a lot of walking, exercising, a few 5k races. But mostly just walking. I was set against running. Then some of my friends were going on an in-state road trip to see the sights and do a 10k (6.2 miles) race. I had never done a 10k before, was not necessarily prepareed for one (and I am by no means advocating running a race with little preparation) but I really wanted to go with my friends! So I took the risk.

And after my first race didn't kill me, I was hooked and I've been running ever since. I've done a half-marathon (plan to do more) and several 10k races. I've learned, I've grown, I've triumphed, I've improved my running. But if I never took the risk of running that race in the first place I would have missed all that! I also have several friends that I run with and so that fills the need for a "team" sport.

Am I fantastic runner? Not necessarily but I am very proud of my 10k time of 58:05! I don't focus on beating anyone but myself so even if I think I may come in towards the end I take the risk and do it anyway! My next risk is doing a relay race- doing 4 legs of race, each leg could be 4+ miles. I can't wait!

Next time you are considering a dream, don't let the risks weigh you down. (This advice is for me as well!) The old saying is true; "You never know unless you try!" It may not pan out in the beginning as was the case with my basketball dream, but keep trying and stay open to the opportunities regardless of the risks. You never know what could happen!

What are some of YOUR dreams and risks/successes? I would love to hear about them! You can leave anonymous comments if you want to, and as always you are welcome to ask any questions, offer feedback, etc. Thanks!

There's Tomatoes in Ketchup?!?!

One night when I was about 9, and my sister, 12, we decided to beat our boredom with a game. We took random bottles and jars out of the pantry and quizzed each other on "Guess the Ingredients!" Quite a clever game I think......

I did pretty well until I had to guess the ingredients for ketchup. I got all the ingredients except one. Tomatoes. I had no idea that tomatoes were the main ingredient in ketchup!

Why am I telling you a story about my childhood? For me, it illustrates how my brain functions in various situations- trying to put it all together, make sense of it but often missing the "main point/ingredient." Here are a couple of examples

School assignments/tests: I poured lots of time and energy into studying and doing homework, but I rarely got above a "B" It was very hard for me to grasp the main point of the assignment/what the teacher was looking for OR I could quote definitions/examples for a textbook, but had no idea how they fit into the main ideas for a test.
Another example- When there was/is a lot to do, it's harder to priortize. To determine the "main ingredient" that needs to be done first, is most important, etc.

Thankfully, there are strategies available to better find the main point/ingredient, etc. Here's some that have worked for me.
School: when possible, turn my asssignments in early for feedback to see what points I am missing, what gaps I need to fill in. When preparing for tests, specifically ask the teacher, "why is this important? How does this fit with the main goal?" Not all teachers have been receptive to this, but many have!
For prioritizing: I put everything to do into the electronic calendar on my phone (just a regular cell phone), often a day before it's due. I check it every morning for what needs to be done and see what I can get done that day. Plus, there's alarms that go off if I forget what needs to be done.

What strategies have worked for you? I welcome any feedback, questions, comments, etc. This is a topic I'm VERY open to discussing, so no need to be hesitant about asking me questions!

Learn by Doing, Not Just by Observing

Recently I had an overnight trip with friends to a relative's cabin. For breakfast the next morning, we made french toast and I shared the following story. It's good for a laugh, but also, I believe a classic example of "how to" teach/guide a child who has sustained a brain injury.

Until I was 18, I did not know that french toast came from bread! I don't know exactly what I thought, I guess in my mind once the batter hit the frying pan, it magically became the same size and thickness as a slice of bread!

One Saturday morning, my Dad thought it would be a good idea if I made the French Toast and give my mom a break. I agreed walked up to the counter and stared at the batter, bread and fying pan. I kept staring until my Mom whispered to my Dad, "I don't think she knows how to do it!"

Truly, I didn't know what to do! And this why. While I had "observed" the making of french toast on, I'm sure multiple occasions, I had never actually done it. Because I had only watched and not interacted, the skill set had not sunk in. With any child, but especially a child with a brain injury, skills need to be taught. When the brain is injured, it does not make automatically make the connections, send the signals to the child that say," This is a time to learn how to do this. Watch what happens. Watch what this person is doing and try to remember."

So, next time you are working with, caring for a child with a brain injury (or really any child in general) and their skills seem "off" ask yourself if you have taught them, if they have done it, been hands on with it. Or if they have only observed. You'll be amazed at the difference!

No Space at the Playdoh Table-An Analogy in Anxiety

One of the favorite activity areas in my classroom is the playdoh table, where children can squeeze, squish, roll and pinch the colored salt dough to their hearts content. However, to maintain control and reduce the amount of fighting and playdoh that ends up on the floor, only six children can be at the playdoh table at one time. When the chairs are full, they need to choose another place to play. To help them remember, there are six brightly colored letters affixed to the table, and six chairs adjacent to those letters. There is also a timer that is set and children are taught that when the timer goes off, it is time to go play in a new area.

Recently, a child was determined to play at the full table no matter what! He would drag a chair over from another table, plop down and go to town! I explained to him that there was space for 6 chairs, each child was in a chair, there was not space for another chair. I showed him the timer, showed him how it was moving closer to zero, and when it rang he would be able to play there. But until he heard the timer, he needed to choose another place to play.

I tried to get him reengaged in a variety of activities- reading books, painting, block building, etc. but the second I turned my back he was back at the table with his chair, ready to play. This was repeated multiple times during a 10 minute period. Such creativity and persistence!

How does this relate to anxiety? While he was so focused on the playdoh, he missed out on a lot of other fun opportunities during that 10 minute wait! Such can be the case with my anxiety-I get so focused on worrying about a situation that I miss out on a lot of other good things while just waiting for things to play out. Just as the timer for playdoh goes off and the situation changes, so it is with anxiety situations. I was trying to think about a situation where my anxiety benefited me- and I couldn't think of a single one!

Anxiety happens-it can't ever be completely avoided. But may we all remember the things we could be missing while we are worrying! And just waiting for the timer to go off.....

How I Go to Sleep

I'm not the best sleeper in the world. I never have been. Difficulty sleeping is common for someone with a brain injury. The typical sleep pattern has been disrupted, The brain does not "self-calm" as a healthy brain would, so it's much more difficult to unwind before going to bed and go back to sleep if you wake up during the middle of the night.



For several months, I was pretty consistently taking 2 tylenol pm's a night. Not my best-ever decision. It wasn't so much that I couldn't fall asleep without them but that the act of going to sleep just seemed like so much "work" and I didn't feel like going through the hassle of it.



However, after much trial and error I have found a routine that works very well for me, allows me to fall asleep on my own without a sleep aid. Here it is:

-Get some form of exercise during the day whether it's running, walking, pilates, etc.

-Run the air conditioner or fan for an hour or so before I go to bed to cool down the bedroom

-Clean up my home (hang up clothes, load the dishwasher, etc. Nothing too big. It's tempting to say I'm too tired and I'll do it in the morning but there's rarely time in the morning! Plus, I'd rather wake up to cleanliness than to clutter and it's one less thing to do when I wake up)



-Write in my journal or make a list of all the things I'm grateful for that day

-Read a book or magazine in the chair by my bed



Finally,I don't get into bed until I'm ready to go sleep. This can be a challenging one. Sometimes I think, "But I have to bed, asleep, by this time to get this much sleep or else," however until I am good and ready to fall asleep, getting into bed has proved somewhat useless for me. I just try to ignore the time and enjoy the book or magazine I'm reading.



This is not foolproof, I still have nights where I sleep less than I would like, nights when I'm wide awake in the middle of the night. I keep a few benadryl on hand for sleep emergencies. But poor nights of sleep have become much less rare since I got into a routine. Find what routine works for you! What have you tried that has been beneficial for you? I would really like to know!

Coordination-Or Lack Thereof

For as long as I can recall hand-eye coordination and myself have not been close friends. Coordination is a common challenge/symptom of one who has sustained a brain injury. There is a lot of brain processing required that requires time and is taxing on the brain. For example, think about trying to catch a football. You have to be aware of where the ball is, position yourself, make any necessary adjustments, all with a matter of seconds. The advice of "keep your eye on the ball!" Is just not advice to compensate for the neurological struggles. It's truly different from the typical human struggle of not being good at sports.

I try to take advantage of opportunities to participate in sports with my friends and I do enjoy, but overall, it's just not my thing! I don't know that I have ever bowled above a 75, I strike out at softball 98% of the time, miss free throws and drop footballs and frisbees. Not trying to be hard on myself, just makng an accurate observation here.

However, something that has been etched in my mind during the years of therapy and overall brain injury is this: there are always options! In my case, getting a group of friends together at the park with some balls is not really for me! But that doesn't mean that I abandon all forms of athleticism and socializing with my friends. I just try new things! And even better, I discover that I can do them well!

For example, I discovered that I love to run, something that requires much less coordination for me. It's allowed me to challenge myself to run the 5k, 10k, 1/2 marathon. To be able to complete 6.2 miles in just 58 minutes-something I am very proud of! And hiking has become an extension of running/walking, a new favorite. I discovered I can do a 17 mile hike in a matter of hours and still feel somewhat human afterwords! And doing those as a means of socialization? Simple. I have friends that I train with and we do races together, or there's a group friends planning a day hike.

The point of this post is not to seek sympathy for my lack of coordination or to get lauded for what skills I do posses. Rather the point is this, when living with a brain injury, don't let challenges trip you up from doing things you enjoy. A challenge doesn't mean that you need to abandon the endeavor, it just means you may need to find another option of doing it! And trust me, they are out there......

Accepting Feedback

I had an interesting experience at work the other day-I teach school. This year I am at a new school. Last Friday, while conversing with my co-teacher, it came up that I had sustained a brain injury. Her response: "You should have told me- you make SO much more sense now!" While I would recommend a more tactful response than "You make SO much more sense now"
her point was valid. There had been behaviors she had noticed but because she did not know about the brain injury, she assumed that something was wrong, that I "couldn't handle the job." Noticed behaviors included: looking down while I was talking to someone, giving blank looks, getting lost in the school, worrying about things that didn't need consideration. Behaviors that make much more sense when a brain injury is factored in.

My initial response: I felt offended and somewhat exposed that something was wrong. I assumed that if someone had noticed these things about me I must not be functioning as well as I thought. I felt like my faults were being pointed out. I tried to find resolution but I spent much of the weekend stewing over it. In conversation with some close friends, they mentioned that the intent of the conversation was most likely not critical, but I didn't believe them.

I was somewhat apprehensive to going back to work on Monday, afraid that people would be "watching" me, that I would have to work extra hard to prove that I could do the job. As it turns out, it was one of my best work days! I came to be grateful for that feedback, believing that it wasn't intended as critical, and realize that it was actually good and accurate feedback. For example, I felt I could converse better when I remembered not to look down and the day was more enjoyable when I would ask myself, "Do I really need to be concerned with this?" and then acting appropriately.

Feedback can be unexpected, painful, truthful, etc. However, if we move past the offense towards the possibilities, it can be very beneficial! Now it's your turn to respond: How would you feel if you were in my shoes? How would you have responded?

Learning Experiences

It's been said to me before that "mistakes are not mistakes. They are learning experiences. The only mistake is if you don't learn from it." I believed in that but couldn't quite put it into practice. I would think "Well, now I know for next time," but it was more of a passing thought.

Also, along with a brain injury comes higher levels of anxiety, perfectionism, guilt, etc. So when there were learning experiences, it was/is harder to separate from all the emotions and just learn and move ahead.

But yesterday, something clicked for me. I recently had a rather..... large..... learning experience, one of those that I was responsible for, consequence of my choices, etc. I had been having a really hard time moving past it, I could have avoided it-why didn't I, etc. Then I realized- without learning experiences, where would be the motivation to change? To ultimately become better and happier? So now because I do know, I can change. And more than just a passing thought.

Here's to learning experiences!!!!!

Conversation Continued....

I had a few additional thoughts about the way I communicate, or how many/most individuals with a brain injury communicate.

-A need to say what is on your mind, even if it may not relate to the current conversation topic. When I have a spontaneous conversation topic, I try to remind myself to inform my conversation partner where that train of thought came from.

-A habit of saying what is on your mind at the first opportunity. This typically occurs when beginning a phone call. It can be tempting to skip the "how are you" part and just launch into the message, the purpose of why you called. I suppose that's why I'm a fan of texting-I can just give the message. The motivation for such communication is not trying to be rude or impatient, but someone with a brain injury has a very difficult time "putting thoughts aside." Rather, conversing or delivering a message can be like a goal to be accomplished.

-Sometimes endng a conversation can also be difficult because the ending is not always the same. Is it a long or a short phone call? Should you be the first one to hang up or not? How do you negotiate the social situation?
Thankfully conversation skills can be improved! Through trial and error, seeking feedback, etc.

Like Talking to a Roller Coaster

I am not the world's most gifted conversationalist. I have lots of valuable things to say (or at least I believe so), it's the give-and-take, attention, parts of the conversation that are a problem for me. The best analogy I can come up with is that talking to me can be like talking to a roller coaster!

For example, I tend to change topics at random, like how a car can jump from one roller coaster track to the other. Sometimes I forget that my friends can't read my mind and know what I'm thinking about when I suddenly bring up a new topic or return to the old one. Or when a friend/family member makes a comment, I hear them, but instead of responding, I give a comment that's related to what's on my mind at the time. Making eye contact is also very challenging for anyone with a brain injury- eye contact can be intimidating and/or just plain hard to stay that focused for an amount of time.

Having a conversation is especially challenging over the telephone because I can't see the other person's facial/body cues to know when they are done speaking. I tend to interrupt, not because I don't care or I'm trying to be rude but because there's less guide to know when it's OK for me to take a turn to talk. As a final example, I tend to forget that it's hard for people to follow me when I'm not paying attention. As a result, I tend to talk to my feet while I'm tying my shoes or inside my purse while I'm looking for something. Kind of like going through a dark tunnel on a rollercoaster.

Thankfully my conversation skills have improved over time. I have self-trained myself to be more aware of my conversation skills. For example, whenever someone tells me something, I count (to myself) to wait for a time to speak and make a comment to acknowledge that I am listening to what they are saying, that it is important to me. Waiting before my roller coaster car jumps tracks.

While I am by no means trying to condone poor conversation skills, keep in mind that they are very hard for hard for someone with a brain injury! Reading non-verbal cues, staying focused, keeping eye contact are not easy. So,when you are in the position of having a conversation with such a person- be kind, be patient. Rather than criticizing help them, guide them in improving their skills.

Rigid Rule Follower

I am rigid rule follower! (Though much less rigid then I used to be) One of my family's favorite stories to tell about me is when I came home from school crying in 2nd grade because I had been chewing gum. The teacher had not scolded me, I was crying because she didn't know I was chewing gum! In 6th when I was sliding on the ice (against the rules) and didnt' get caught, I confessed to my teacher after school. I wonder what he was thinking at the time-thank goodness he kept it to himself! And the examples go on........

Why was I "self-confessing?" My system just couldn't take the high levels of guilt. There was also a fear of "getting into trouble." The only way I knew to release it was to confess! Or to avoid getting into trouble. Also, with a brain that has sustained some kind of injury, thinking abstractly is very hard to do! These brains tend to see more in black/white, rules and consequences. It's harder for the brain to negotiate "exceptions" to rules or to judge when guidelines can be/are more flexible.

Though I no longer confess, per se, I am still prone to following rules. My cousin laughs with me about the times when we went hiking or swimming in a hotel pool-someone came to tell us it was time to pack it up, and so I was the first to bolt from the trail to the car or got out of the pool ASAP.

What to do? I don't have a clear answer for this. I am learning as I go along. I am much less rigid than I used to be but it's still hard. Time and experience have been the best teachers-the more I experience, the more I realize the exceptions and flexibility to rules and situations.
But I can say this-when dealing with someone who does have a high level of rigidity, talk through it with them, help them to understand the other points of view, etc. One of the most frustrating things for me as a child (and sometimes as an adult!!!) is to have a concern responded to with "don't worry about it." If time does not permit talking about it then, acknowledge that it is a valid concern. Unfortunately, the brain is not equipped with a switch that when someone says "don't worry about it," the concern disappears. It's a process.

Answer Anxiety

As previously mentioned in this blog, math and I am not, have not and likely will not ever be friends. Especially when it comes to solving math equations. I get anxiety and frustrated if it takes me time to figure out the answer. This was very frustrating to family members who would be attempting to help me with my homework and I would be guessing like mad.
I also recall driving in the car with my parents and they were trying to help me understand blocks, 100 south is one block south of Temple Square, etc. Then they would ask me questions. And I would get tense because it was quiet and I didn't have the answer right then, etc. Also, when I was taking exams for school I would typically be the first one done, having anxiety that if I didn't answer right away I might forget. And I rarely went back to check my answers because it would get too stressful for me. Too much thinking and rethinking. I also tend to make snap decisions in life-I don't like to deliberate!

So, with all that in mind, what's a girl to do???? A few things that have worked for me..... First of all, treating/managing my anxiety better so it wasn't such a deterrent for me. Second, just being aware that it's a challenge for me. Recognizing that I make snap decisions so taking time to think if I can afford to make a snap decision or if it really is something that needs more time and thought. And if I am going to finish a test quickly, I'd better be well prepared the first time! For me, it has been easier to be aware of it and accomodate instead of trying to get rid of it.

And suggestions for children- in my working with children with brain injury, I'll ask them questions but if they appear to be stressed, I'll move on and come back to it. If they show signs of wanting to figure it out, I'll be patient and support them. Most importantly, trying to create an environment where it's not complete silence and one person waiting on me to figure this out.

This is based mainly on my experience but hopefully there is something in here that applies to another's situation as well!
PS- if you read this blog, please let me know. It would really help to have that feedback. Thank you!!!

Should have known better?!?!

The other day I recalled an incident from when I was 11, nearly 12 years old and it seemed to fit for this blog..... The incident is as follows:

I was talking with my best friend on the phone, making plans to get together that day. I put the phone down to ask my mom if she could come over and when I came back, the line was dead. I called her back and asked her what had happened. My friend said an operator came on the line and told her "Emergency call from "Jane" (my sister) will you please get off the line?' (Something like that). I basically thought, "that's weird. It must have been taken care of," and kept on talking.

When it was discovered a few minutes later that I had disregarded an emergency call (my niece needed stitches) I was severely scolded along the lines of "old enough to know better." When I realized what I had done, I felt awful. I hadn't meant to do anything wrong. Simply put, I just hadn't "connected the dots." An emergency call was completely new information to me and my brain didn't process it in a way that sent the message, "This is important. You should tell an adult about this."

As I now work with children, those with and without disabilities, I am reminded to be more compassionate, to see things from their perspective. I am particularly reminded to rethink expectations- not based solely on what they "should" or "should not" be doing but "how are they doing right now?" I try to deal with each child/situation as it comes because no two are alike!

Something to think about and remember.

So, the thought occurred to me....

I recently realized that while I alluded to having social challenges, I didn't provide much info about the how and the why. Allow me to do so now...... Please.

In addition to, complementary to, whatever.... a brain injury, at least in my case, is Nonverbal Learning Disorder. Essentially what that means is difficulty learning skills, social and otherwise, unless they are specifically verbally taught. Brain injury disrupts the brain making normal brain connections. A typically developing brain can learn skills and unwritten rules and guidelines, simply by observing situations; however a brain that has disrupted develoment needs more specific teaching.

For example, you call someone, they are in a hurry and don't have much time to talk. They may specifically tell you that but it is more likely that will try to give "cues" such as short, direct answers and comments and/or a more frustrated, rushed tone of voice. Not necessarily rude, just trying to provide feedback that they can't talk for long. Unfortunately, if the person on the other end has had a brain injury, cues won't do the job. They need more specific, yet postive feedback such as, "Now is not a good time for me, when can we talk again?" They need to know that you can't talk now, that you are not mad/upset, you can/will continue the conversation later. (Or at least that has been true in my case.....)

A couple of other examples: unless there is specific teaching an individual with a brain injury is less likely to know what not to say/ask. Knowing when a question is too personal or when there is too much/unecessary information (like a clogged toilet. True story)

Finally, social situations are challenging for somone with a brain injury because there is so much brain negotiation required. For example, a preschooler who is trying to enter a playgroup. The act of choosing a group, making their way over there, deciding what to say/do to enter the playgroup, and how to adjust if their first entrance attempt fails. This can be overwhelming for inviduals aged children to adults!

So, whether you work, know or love someone with a brain injury, remember to do direct, specific, positve teaching and modeling to learn and develop social skills. It's needed and appreciated!

A Different Approach

Math was not my friend during elementary school years. In fact, a lot of times it was my enemy! Math just did not make a lot of sense to me and as the academic challenges increased so did my level of frustation. I believe the biggest reason for my math struggles was that I approached problems in a different way than what was being taught. When the approach made sense to me, I did OK.

For example, I did really well in addition but I did not have a traditional problem solving approach. The classroom approach was to count/add number by number. 7+8 would be solved by starting with 8 and counting, 9,10,11,12, etc. However, I discovered an approach that seemed easier and made a lot more sense to me! I already knew that if I added 10 to any number, the first digit would remain the same, the second would increase by one. So naturally if I added 10 to 7, it would be 17. Next, I knew that subtracting 10-8 would be 2. So once I had 17 in my mind, I just subtracted 2 and got 15! Easy for me? Yes. Traditional? Perhaps not, but it worked for me!

Even today I can count from 17 to 510 simply by adding 20 and subtracting 3. Again, I stress the importance of trying new strategies and approaching and individualizing education for the child even when it may be untraditional. Because when an approach finally does click for a child, it feels fantastic!

Learning to Tie my Shoes

When I think of eventually mastering skills as a child, I think of learning to tie my shoes. It took a significant amount of time. I did not successfully learn how to tie my shoes until I was 8 1/2 years old. I do not recall previous attempts of shoe tying-aside from being at school and having to ask peers to tie my shoes for me.

But I do clearly remember the afternoon when I mastered shoe tying. My great-aunt who had been a nurse for many years was visiting and my parents told her about my shoe tying struggles. She asked if she might give it a try with me. I remember sitting with her on the living room couch with a single shoelace in hand. She had me practice crossing, tying, knotting a shoelace not on a pair of shoes but around my knee. Before the afternoon was up, I could tie my shoes!

The message: when a child is struggling to master a skill, don't give up. Just try a different approach! You never know what approach may be just what clicks for the child.......

Social Struggles

Having social struggles is nothing new for me. As a child through a teenager, while most of my peers were excitedly awaiting recess and/or lunch break as a chance to see and visit with their friends, I dreaded it. Why? Because it meant a span of time when I would be in large social settings and I would need to find someone to eat with or else be alone. I could usually find someone eat with that I happened to know and wouldn't care if I sat by them. Unfortunately, this typically meant that they wouldn't care if I wasn't there, either.

My lunchtime troubles were elevated my junior year of high school when my family moved to a new country and continent. I don't know that words can adequately describe what it was like to be living so far from home for the first time and attending school in a foreign country. Yet I still managed to thrive in that environment by participating in extracurricular activities. This strategy may not work for everyone, adding one more thing to a schedule might be too overwhelming, but for me it really worked! It led to leadership opportunities, responsibilities during lunchtime and even if my peers and I were not friends outside of club activities it gave us a connection and let me feel like I belonged.

Post-high school I needed a new strategy. I needed support for how to negotiate social situations- what to say, how to react, etc. I asked my sister to become my "social coach" and even today we discuss, we role-play and she gives me feedback, at my request. Recently, I wanted to have dinner with my friends to celebrate my grad school graduation. But the first round of invites brought no results and I was sorely disappointed. With my sisters guidance, new invites were sent out, using a new medium of communication, and nine friends accepted! It was a very sweet moment to go from years of eating alone to have so many friends surrounding me and supporting me.

Getting Lost and Then Finding My Way

My earliest memories of getting lost date back to kindergarten. I lived across the street and around the corner from the school, a 2-3 minute walk at the most. However, I was unable to find my way home on my own. And as I increased with age, my ability to navigate, did not.

My philosophy on why it was so hard for me to find my way around is this: if I had to find my way independently for the first time, and I had directions, I was more likely to be successful. Not gauranteed, but more likely. However, if I did not idependently find my way, if I was following someone or just riding in the car, my "brain did not learn the way." The next time I had to make that trip, I would remember very little about how to do it, even if I had made that trip several times.

The good news? Things got better for me. Much better. Though navigation is still not a strength of mine I have found ways to adapt so it does not limit my life. First, whenever I am going somewhere new I try to leave in plenty of time to get there. Stress/anxiety tends to disrupt my ability and think logically about how to get from here to there. Next, I get directions- from online, from friends, etc. Finally, I tell people, in good taste, that I have a poor sense of direction. For example, my group of friends that I go out with know that I have a harder time finding my way around. Letting them know that has been helpful because it takes the pressure off me to help navigate and if I give bad directions or something goes wrong we can laugh about it, etc instead of me feeling embarrassed.

A challenge does not necessarily mean it is a limitation. Remember that.

Introduction to Claire: A Success Story

Written by Dr. David Nilsson, Ph.D

I first met "Claire" about 9 nine years ago. She was first referred at that time for a neuropsychological assessment, presented as "bright" but with unusual variation in her academic function, presenting difficulty for hand/eye coordination, handwriting characterized as "horrible." Claire presented with particularly low stress and frustration tolerance, and promiment elevations of anxiety. Through her diligent effort she had been an excellent student, consistently on the honor roll but working unusually hard for grades. Math has been a particular concern; she nearly failed math, even with a calculator. Claire struggles socially still and becomes overwhelmed and over-stimulated. Her speech had been rapid and dysfluent, describing herself as an "intense person." Claire recognized the need for external structure having a difficult time relaxing and overreacting emotionally. She presented with an impressive tenacity, reactive irritability, and social anxiety. She displayed an unusually strong sense of right and wrong.

In completing neuropsychological testing, Claire presented with a mixed neurodevelopmental profile a pattern of impressive elevations and frustrating functional deficits. Based on history and testing it was my opinion that Claire experienced neurological injury, the source not clearly evident. No pregnancy or delivery complications were evident but Claire did have early vision problems (ie strabismus) undergoing surgery at 18 months. She developed asthma at age 2, clearly familial. She was described as her mother as beginning to stutter, expressive language becoming noticeably dysfluent, right after receiving a vaccination. Her oral motor function became somewhat imprecise. She did not learn how to ride a bike until 7 or 8 years of age.

Claire's drawings early in school were immature, drawing a circle as a straight line.

Subsequent to a rocky beginning, Claire has been very attentive in accepting feedback and applying it, continuing to the present day, having successfully completing a Master's Degree in Special Education. Claire continues to progress, making an important contribution to children and their development as a teacher.