October is ADHD awareness month.  This is part one of a two part series.  In this posting, I address what ADHD is, the choice of medicating, other treatments, choosing a doctor and how to get diagnosed.  Next week’s post will be more personal and address stereotypes, how to get help and how awesome the ADHD brain is! Neurodiversity rocks!

According to the American Psychiatric Association, “Attention-deficit/hyperactivity disorder is one of the most common mental disorders affecting children.  ADHD also affects many adults.  Symptoms of ADHD include inattention (not being able to keep focus,) hyperactivity (excess movements that is not fitting to the setting) and impulsivity (hasty acts that occur in the moment without thought)

An estimated 8.4% of children and 2.5% of adults have ADHD.  ADHD is often first identified in school-aged children when it leads to disruption in the classroom or problems with schoolwork.  It is more common among boys than girls.”   (A quick side note:  I really,  really dislike this definition.  It doesn’t even remotely describe ADHD.  And a mental disorder?  Please!  I’ll get into that in next week’s post.)

ADHD can only be diagnosed by a physician.  Typically, it’s pretty easy to diagnose.  There’s a simple questionnaire.  For Ryan, he went through testing through the public school system, then we went to the doctor.  The school is not allowed to diagnose, but they can make recommendations  and say the student has certain tendencies.  Once officially diagnosed, then the school can put it into their forms, for a plan and an IEP.  

Ryan was diagnosed with ADHD when he was 5 and started meds when he was 6.  But I knew when he was much younger.  (Like when he was 2!)   I went through a period of time before he was officially diagnosed, praying that he didn’t have it.  And I really didn’t want to medicate him when he was diagnosed.  It was so painful to go through.  My husband and I did a lot of research, reading, and talking to other parents who were going through the same thing. But when it came down to making the decision, someone said to us, well, if you had diabetes, wouldn’t you take insulin?  ADHD is a medical condition just like diabetes.  Wouldn’t you want to help alleviate the symptoms and make your child’s life more manageable and give them whatever it takes to help them be successful?  

When we started Ryan on meds, I couldn’t believe the difference it made.  He was able to be much more attentive in class and at home he didn’t have as many out of control moments.  However, it wasn’t a completely magical pill.  The dosage had to be adjusted with every growth spurt.  Some of the side effects weren’t so great.  Initially his appetite was affected and when we increased it too much, his affect became flat.  He was no longer the happy go lucky kid with a joie de vivre.  Finding the right medication and the right dose wouldn’t last forever.  Often a medication would work for 6 months and then it would stop being as effective as we would like, and we would go back to the drawing board with the doctors. Over the course of 12 years, we have tried all kinds of medication “cocktails” to get the best outcomes.  It’s also important to know that again – medication isn’t the complete magic pill. Even with medications, Ryan still exhibits many of the symptoms of ADHD.  The meds just help slow the brain down a bit.  In the words of Ryan, “my brain is running laps around me and I’m trying to catch it.”  The meds help his brain slow down a bit, so he can catch up with it.  

 Many parents still opt not to medicate their children, and that is their choice.  There are dietary, herbal, vitamin and mineral supplements that although haven’t been medically proven to help, there is anecdotal evidence that they do..  We had discovered that blue food dye seemed to cause Ryan to behave even more hyperactively.  (See my post “The Incident of the Blue Icee”) We also read that nitrates in foods (used mostly in cured meats like bacon, salami and lunch meats) could also cause hyperactivity.  We chose early on to keep Ryan’s diet as clean as possible.  Other supplements such as Omega 3’s can help boost brain function as well as DHA.  We have tried all of this, and honestly those alone have not significantly helped Ryan’s brain hyperactivity.   Using supplements, diet,  and medication together  have been the best option for him.  

Speaking of doctors, we opted to see a Developmental Pediatrician for the management of Ryan’s medications and testing.  In my experience, a regular pediatrician typically doesn’t have the knowledge, training,  and experience to manage a child with ADHD.  Many times a pediatrician will refer their patients with ADHD to a psychiatrist.  But a psychiatrist, whether or not they are a Pediatric Psychiatrist or one who sees all ages,  just manages medications, not the entire child.  A Developmental Pediatrician is trained to treat children with all developmental issues and is able to manage the entire child.  They can be difficult to find, and many do not accept insurance.   Our doctor was invaluable, and I do not know what we would have done without her.  Over the 12 years we spent seeing her, she became a part of our family.  She knew Ryan well, and Ryan always looked forward to seeing her.  She offered a safe place to be completely open and honest and always had an ear to listen.  Her advice, and testing, and heartfelt guidance was always welcome.  

ADHD is typically not a stand alone diagnosis.  It comes with all kinds of other complex issues.  Some of these issues are DSM-5 diagnoses, like ADHD.  Others are what are called dysfunctions and don’t have full DSM-5 diagnoses.  (DSM-5 is short for Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition).  To clarify a bit, dysfunctions can also be seen as a “side effect” or a “sign and symptom” of ADHD.  Some of these dysfunctions are what you might use to diagnose ADHD.  Not all people with ADHD have these dysfunctions, but many people do.  

So, what are the signs and symptoms of ADHD?  The APA’s definition is very short and sweet, but it just doesn’t do it justice.  Here are the general symptoms according to The Connor Scale:

Hyperactivity

Trouble  paying attention

Problems keeping friends

Emotional problems

Problems eating or sleeping

Impulsiveness

Problems with math or language

Temper tantrums

Compulsiveness

Fears of being separated from loved ones.

(The Connor Scale, is almost exclusively used for diagnosing ADHD)

And here’s a word on adult diagnosis.  I know adults who I believe have ADHD.  I have close relatives that I believe have ADHD.  I have seen them struggle their entire lives.  What I can say to them is, get tested..  It takes very little effort.  And what it can do for them is give them a reason as to why they are the way they are.  It could even possibly open up a world of help.  Maybe the help will be therapy, or medication, or both.  It can quite possibly help their relationships with friends, family and spouses.  One is never too old to get help.  And for sure it isn’t shameful.   

“Where is it?  I just had it!  It was right here!” 

“What am I supposed to do next?  I don’t remember!”

“You said we were going to the store this afternoon.  Why aren’t we going?  Why did you lie to me?”

“Ryan, are you done with your homework?  Why are you playing instead of doing your homework?”

“Ryan, please think before you act! You just threw that toy and it almost hit your sister!”

“You’re wrong!  The teacher told me in history class that it happened this way, not the way you’re telling me!”

The statements  above are examples of executive functioning gone awry.

According to Understood.org :  “Some people describe executive function as “the management system of the brain.” That’s because the skills involved let us set goals, plan, and get things done. When people struggle with executive function, it impacts them at home, in school, and in life.”   And, it has nothing to do with being lazy.

Those people with ADHD have trouble with executive functioning.  Some have a few issues, and some have the “gift”  of all of them.  Ryan has been “blessed” with all of them.  What an overachiever!!

Good executive function helps us pay attention, helps us stay organized, helps us to plan and to prioritize.  It helps us to start tasks and to stay focused to complete them.  It helps to regulate one’s emotions and understand others’ differing points of view.  And it keeps you on track with what you’re doing.

You may know someone with these issues, and you may even see yourself with some of these issues.  I know that I have some of these issues.  Do I have ADHD?  Well, my husband says I have the inattentive type, not the hyperactive type.  Hmmm.  Maybe.  The point I’m trying to make is that many of us have varying degrees of executive functioning issues.  What makes it a problem though, is the inability to know and understand that you have these issues, and not having the tools to help you accomplish the necessary tasks in life to make you a successful adult.  Which is where educational coaching and therapy helps. 

Ryan’s brain is wired differently.  It’s not bad, or wrong, or damaged, just different.  We learned early on in his elementary school experience that his executive functioning skills did not develop quickly enough.  Typically, they mostly develop early on in childhood but also continue to develop into the 20’s.  Middle school and high school are the times when these skills really need to be in place.  And this is the time when they really become a big problem.  Especially when the ADHD teenager is developing emotionally and independently.  Fights in the home are increased and a big part is due to poor executive functioning.  (Yes, I speak from experience!)  There were many times I dreaded Ryan coming home from school because of what was to come: Yelling and fighting over homework!  It was exhausting!

So what did we do, and are still doing?  We found an  Educational Therapist who coached Ryan in developing skills and tools to help.  She discovered what worked for Ryan.  (It takes time to figure all of this out by the way.  Weeks and sometimes months.  And then there are things that work for a while, and then you have to go back to the drawing board to figure out something new.)  

Some of the things that worked for Ryan in high school were:

Finding a place in the home to study without distractions

Using color coded stickers for each subject 

Using a homework calendar

Using a timer for a certain amount of study time

Using a timer for breaktime

Using a special calendar for homework

Using the therapist to work directly with Ryan’s teachers.

Having teachers check  to make sure Ryan wrote down all homework assignments correctly

Setting up a specific schedule for finals study which included break times.

In college, Ryan works with a special coach through a wonderful program at his school.  He still uses some of the skills he learned above.  The difference is, now he has to be responsible and be more active and proactive in his studies.  Sometimes, (like neurotypical kids) he still misses assignments, and he doesn’t have anyone nagging him. (Me!)  So he has to be more responsible.  What’s so encouraging and exciting is that some of these tools have really worked for him, and I see the evidence of his maturity.  Ryan will most likely continue having issues with his executive functioning for most of his life.  But, with the invaluable skills he’s learning, he will have a better chance at success.  

My husband and I just got back from Jackson, Wyoming and spent a great deal of time hiking in Great Teton National Park.  Beautiful, stunning views of the Tetons inspired me to write a letter to my children.  The backdrop of the Tetons, although beautiful, belie the fact that  the area itself can be a challenging and difficult place.  In the fall, the changing of the leaves, the closure of many of the park’s visitor centers and the native animals (especially bear) eating their fill around the clock are warning signs that winter is coming. 

As is usual for me, songs go through my mind on a continual loop.  One of the songs that just would not leave me alone was “Climb Every Mountain” written by Rodgers and Hammerstein for the musical “The Sound Of Music.” :

Climb every mountain.

Ford every stream.

Follow every rainbow,

Till you find your dream.

For three hours, over and over again, I sang this in my head.  I told my husband, and sang the verse for him.  He just rolled his eyes and shook his head. 

I thought of Ryan and my daughter as I sang this song.  They have both had difficult mountains to climb.  I want to share a bit of my thoughts that I want to share with them, about how I feel about them and their mountains that they climb.  I hope that you will find inspiration for yourself and your loved ones in these words.  (Posted by permission from Ryan)

Dearest children,

Life can be a crazy roller coaster.  It may seem to you that life is unfair.  That some people that you see and many close friends that you have grown up with have had things handed to them on a silver platter.  Many of these people you no longer have anything in common with, and the ties that bound you have become unbound.   The reasons for this may be many, whether it’s jealousy, the unwillingness of some to accept you as you are, or just normal growing apart.  I know that you hurt for what once was and that growing up for you two has been difficult. 

You both have your challenges, emotional, mental, physical, and educational.  But – what you do have is two parents who love you, who are your champions, who have and will continue to be your champions.  You have extended family and lifelong friends who love and support you.   You have your faith in God and you are both so resilient and have incredible fortitude. I have watched you climb your mountains, followed your dreams, fallen, gotten back up, fallen again, and gotten back up.  

I know there have been times when you have wanted to give up.  There have been some incredibly low times when we have spent time crying and railing against it all.  But again, you have picked yourselves up and continued on.  

Many times, you have given up on some of your dreams.  Then you’ve developed new dreams.  The saying that iis so popular, “ that you can do whatever you want” isn’t always attainable.  Dreams need to be realistic.  But once those dreams are realized and possible, then they CAN happen!  With a LOT of hard work.  You have both found that this road is incredibly difficult.  But the rewards are so worth it!   

I am proud of you and all that you have accomplished.  I am proud of you even when you fail.  I am proud of you when I see the compassionate and loving young adults that you have become.  What I ask in return is that you are honest and give whatever it is that you are trying to accomplish, your best.  I will continue to help when you want, to be your champion, to love you.  Please know, that if you feel that you have disappointed me, it is nor that I am disappointed IN you, I am disappointed FOR you.  Sometimes, I may say things that you may not want to hear, but know that they are always said in love.  

You are right, life isn’t fair.  And I’ve told you both that the sooner you realize this, the better you’ll be.  Life isn’t the great equalizer that many people think it is, or people think it should be.  If all was easy, then life would be boring.  What would be the point of working hard?  What would be the point of having dreams? What would be the point of climbing the mountain? Adversity makes one strong, if you choose to work through it.  It can make you compassionate when you see others who struggle as well.  It can give you a spirit of giving to those who need help, like you have both needed help.  

Climb your mountain, ford your stream, follow your rainbow, and find your dream.

I am right there behind you, every step of the way.

Love,

Mom

Ryan and I sat down for lunch the other day and we decided to conduct a short interview.  Ryan was all in, but you may notice that his answers are short.  Although he really wanted to share his personal thoughts, he is uncomfortable talking too much about himself.  Those who know him, may be surprised at this, since under normal circumstances, he is very talkative, especially about things he’s passionate about.  We hope that the following will give you a bit more insight about who Ryan is.

Me:  When did you realize that you were different from other children?

R:  When I was in the first grade, I noticed that I couldn’t pay attention very well.  And I was also pulled out of class to spend time one on one with other teachers.  So I wondered why?  But it didn’t really bother me yet.

Me:  How did you feel about being pulled out of class for speech therapy, occupational therapy and special Ed?

R:  On the one hand I liked it and on the other, I didn’t. It helped a lot so that I could understand and comprehend what was going on in the classroom.  Sometimes I was very apprehensive about going.  In the long run, I just got used to it.  No one in my class seemed to care one way or the other either.  Sometimes, it’s hard to access these memories, and some memories I still don’t want to share.

Me:  Do you remember when you had your EEG’s?  

R:  I do , but I don’t want to share those memories, it’s too painful.

Me:  Do you ever feel like you’re alone?

R:  Never

Me:  Do you ever question, why me?

R:  I used to.  But that all changed when I started Boy Scouts.  I’m proud that I’m different,  even though I have to work harder than everyone else.  I’m proud of who I am.

Me:  What are your strengths?

R:  (Laughs)  I’m a good reader, I’m resilient, and I don’t give up.

Me:  What are your weaknesses?

R:  Test taking and procrastination, especially when things are hard.

Me:  What do you think is your greatest accomplishment?

R:  Becoming an Eagle Scout, my Bar Mitzvah, and getting  my driver’s license.  (Laughs)

Me:  Do the meds you take help you?

R:  The ones that I am on now do.  

Me:  What would be your best advice for kids with learning differences?

R:  Don’t give up.

      Find the people who can help you and use them to your advantage.

      Accept who you are, that you are different

Me:  Do you prefer the name difference vs disability?

R:  Difference for sure.  The word disability is a horrible derogatory word.

Me:  Can you tell me what it’s like inside your brain?

R:  (Laughs)  It’s very busy.  It’s running laps around me and I’m trying to chase it.   And it’s always going faster than my speech.  

Me:  What is the most frustrating thing about being different?

R:  Explaining to people how and why I’m different.  They don’t understand and they don’t accept me.

Me:  What would you like people to know about you?

R:  That I’m a hard worker, but I work at my own pace.  And that I’m a kind person and I really care about others.  

Me:  Do you ever feel like giving up?

R:  Never

Me:  What is your dream for yourself?

R:  To succeed in the end and be happy.

What makes a friend?  What makes a friendship meaningful and last?  Who are the special people in our lives that help make our lives better and help make our road easier?

Finding lasting, good relationships has been hard for our family and especially Ryan.  You’ve probably seen the post about kids with special needs:  “Kids with special needs are not weird or odd.  They only want what everyone else wants…to be accepted.” Well, that seems all sweet and wonderful and true, but from real experience, it just doesn’t happen.  The reality is, most kids with significant learning differences and ADHD CAN seem  odd, or weird in a typical kid world.  As much as we all try to make the world an accepting place, children aren’t accepted and included when they are different.  So, for those of us who have children with significant differences, we have had to work diligently to find playmates for our kids who accept them for who they are.  Add to that, once we find these children, then we have to find out if their parents are also accepting.  

Many times, Ryan seemed to have found a friend, but the friendship would be short lived, due to the other child realizing that Ryan talked too much, or Ryan would have outbursts, or Ryan couldn’t keep up with a conversation, or Ryan would easily get upset.  Truly, I wasn’t upset over the other child’s reaction.  My heart broke for Ryan.  We would spend time with families that we had become close to who had children around the same age as our children, but as the children got older, it became clear that they didn’t want to spend as much time with us.  

I know that I am not alone here.  This is the real world for us families that have children with LD.  So- what to do?  Well, we ended up having to give up the idea that Ryan would have friends who were typical.  Which meant that he wouldn’t be able to “work” on skills needed for typical development with “normal” kids.  Again, how sad is this that he wouldn’t be accepted for who he was, that he’d have to work on social skills with other socially awkward kids.  Maybe not the best idea but where was the choice?  I’m truly not looking for sympathy here.  I’m trying to be honest about the reality.  I’m quite done with people saying that they are accepting.  Because if this were truly the case, then Ryan would have friends that are typical.  Guess what?  He has none that are.  Because again, the reality is,  no one who is typical wants to take the time to become friends with Ryan.  

You might say now, oh how sad this post is.  Yes, it is sad,  But, this is what we as families with kids like Ryan go through  on a daily basis.  Fortunately, there has been a bright light at the end of the tunnel.  When Ryan began school at Westmark in fourth grade, he began to find his people.  Although most of the students there didn’t live close, we would do whatever it took to get Ryan and his friends together, sometimes driving over an hour to get him someplace. Playdates also gave us and the parents of these friends to spend time together and form our own support group.  We bonded over our children’s difficulties and found ways to help each other.  

In ninth grade, Ryan made friends with someone who would become the best friend anyone could ask for.  Now that they are both in college, they only get to see each other a few times a year due to being in two separate states,  and when home, over an hour away from each other.  This past weekend they got to see each other after not seeing each other in a year due to school and COVID.  It was incredible to see them together and hear them talk.  Ryan’s friend is an incredible young man with his own difficult journey.  But he, like Ryan,  is incredibly resilient and strong.  He and Ryan want the best for each other and are incredibly supportive.  And we are doubly blessed by having Ryan’s friend’s parents in our lives,  and we consider them great friends as well.  They have become family.  (You know who you are!!)  I know that Ryan and his friend will be in each other’s lives for years to come.  I’m thankful and grateful that Ryan has been able to find true lasting friendship through all of the ups and downs of relationships over the years.

I thought it might be time for an update on where we are in our journey.  It’s been about a year and a half  since I’ve written anything regarding our present day life with Ryan.  This pandemic has wreaked havoc on all of us in all kinds of ways – physically, mentally, educationally, socially, etc.  

Since I last wrote about “present” day, Ryan finished both his first and second year of college.  He physically returned to school last September and lived in the dorms.  Although most  of his classes were online, he was able to successfully manage academically with the help from his school coach, academic advisors and tutors.  He changed his major to one that suited him better academically and  personally , and one in which he would be able to have more in person learning.  

I am proud of Ryan for his resilience and his refusal to give up.  School is already difficult, but online learning has been an extra challenge, (even for typical students).  Patience, humor and stick- to- it – ness , has been the glue that has held it all together for him.  He has risen to the challenge.  It was definitely not all a bed of roses, as there were missteps along the way, but I am truly amazed at his fortitude.  

This year, as he begins a new year, he will be living off campus with a roommate.  Classes will be mostly online in the first 3 weeks of school due to the overwhelming delta variant in the area where Ryan’s school is.  Not something we wanted or anticipated, but again, he will get through it.  We are all very much looking forward to getting back to a more “normal” college experience.  (Not just for Ryan, but for all students)  

So Ryan – this is for you:  Enjoy your year, keep your head up, keep at it, your dad and I, your family, and your friends are all proud of you.  We love you!

Good Timber

by: Douglas Malloch

The tree that never had to fight

For sun and sky and air and light,

But stood out in the open plain

And always got its share of rain,

Never became a forest king

But lived and died a scrubby thing.

The man who never had to toil

To gain and farm his patch of soil,

Who never had to win his share

Of sun and sky and light and air,

Never became a manly man

But lived and died as he began.

Good timber does not grow with ease,

The stronger wind, the stronger trees,

The further sky, the greater length,

The more the storm, the more the strength.

By sun and cold, by rain and snow,

In trees and men, good timbers grow.

Where thickest lies the forest growth

We find the patriarchs of both.

And they hold counsel with the stars

Whose broken branches show the scars

Of many winds and much of strife.

This is the common law of life.

When Ryan was in preschool, there were some odd things that he did that had us puzzled.  Well – there were a lot of things that he did that had us puzzled, but I just want to talk about one thing in particular.   When Ryan would cross a room, for whatever reason, he would just start walking, or more often than not, running to get to where he wanted to go.  Not an issue, right?  No, it became quite a big issue, when he paid no mind to whatever might be in his path.  Whether it was toys, furniture or people.  Many children go through this during their formative years.  But in the case of Ryan, it became an issue that he would have for years.  And in a worst way, this proprioceptive issue that Ryan had, came to a head when he was 5 years old.  But first let me give you a general description of what proprioception is.

Proprioception (which can also be called kinesthesia)  falls under the general umbrella of sensory processing.  It is the body’s ability to sense its location, movements, and actions. It’s the reason we’re able to move freely without consciously thinking about our environment.  Examples of proprioception include being able to walk or kick without looking at your feet or being able to touch your nose with your eyes closed. Another description is knowing where your body is in space.  Most of us know where our arm is if we have it over our head.  People with proprioceptive issues may actually think it’s out in front of them.

When Ryan was 5 and in transitional kindergarten, he was playing with PVC piping at school.  (I know, I know, why the school allowed kids to play with PVC piping is still a question I can’t answer.)  So, as Ryan was playing with it, he must have thought how fun it would be to pick up 2 pieces and start swinging it around.  Well, as “luck” would have it, he came into full contact with a classmate’s head.  He didn’t hit him on purpose.  In fact, he had no idea that his actions led to the bloody mess of his friend’s face.  His teachers asked him what happened, and Ryan couldn’t answer them, even though they had witnessed the entire event.  They asked Ryan to apologize, but he said he didn’t understand why he had to do that as it didn’t register that he even had anything to do with it.  Because of this, Ryan was suspended from school.  His dad and I talked to him  to try and understand what happened, but again, Ryan couldn’t verbally explain anything to us.  And he couldn’t understand why everyone was so upset with him.  The following week, when Ryan was allowed to come back to school, we met with his teachers.  One of the teachers told us that he thought Ryan may have proprioceptive issues,  He had been watching Ryan for some time and noticed some of the motor skills that Ryan had exhibited that led him to believe that he had a disorder. 

                   Some of the motor skill issues that a child with proprioceptive issues may include: 

• Being awkward or clumsy
• Not knowing their own strength- ie hugging really hard, or not understanding how heavy or light  an object is.   Or they might break pencils and crayons a lot due to not feeling how hard they are pressing.
• Not liking activities that other kids might like such as being on a swing
• Being in constant motion
• Walking into walls
• Swinging  legs under desks
• Not being able to sit still

Most of these things are ways that a child is trying to physically feel things.  They’re trying to get feedback from their own sensory system, which is not working the way that it should.

Ryan had every single one of these motor skill issues.  At the time, we just thought that this was just Ryan, and that he would grow out of them.  But the incident with the PVC pipes, was a final straw and something needed to be done.  So we asked the question, “What can we do?”

The answer was first an evaluation with an Occupational Therapist.  The OT confirmed that Ryan did indeed have proprioceptive issues as well as other sensory integration dysfunctions.  We started therapy twice a week to help Ryan learn skills to help him get the sensory input he needed.  We were also able to identify his strengths, and use them to counterbalance his weaknesses. Homework was also an important aspect of the therapy regimen so we could work on activities on a daily basis. Although therapy helped to some degree, and he had OT through the 3rd grade, Ryan continued to have proprioceptive issues throughout elementary school, middle school and even high school . Later, when he was diagnosed with ADHD, the proprioception issues became a comorbidity. But that’s a tale for another day. As I said earlier, this was the first “official” diagnosis we got for Ryan, and it was just the beginning of our journey.  

If you notice that your own child may have proprioceptive issues, I’d love to hear from you,  I want to encourage you to talk to your child’s teacher, or pediatrician. Hopefully, you can get the help your child needs so they can become the best version of themselves.  Please share this with anyone you know who might need to read this or could benefit from the blog.  

This morning I said to myself, “Take a deep breath.  Another.  And another.  Take a second to catch that time between the match and the fuse. ”

I have always struggled with having (or not having) patience.  We are told it’s a virtue.  It’s a wonderful trait to have! Ugh.  I used to pray for it.  (Really?  By some magic gift, God would provide me with this,  without me working on it?) How many of us have looked up and yelled, Give Me Patience!

In the family I live in, we all struggle with not having patience.  This can make life extremely difficult as you can imagine.  Impatience lurks in all the dark corners of our minds.  We want things to go right, we want things to happen now, not later, we want results now, and we want everyone else to abide by these rules.  During this time of home and social isolation, it’s even harder to manage.  That impatience is always just bubbling under the surface.

I am home with Ryan quite a bit of the time.  We are in each others way.  We both have our own way  of doing things.  Our independence and old ways of life before the virus no longer exist.  We have to coexist with each other during the day.  He doing his schoolwork for college., and me doing work, or cleaning, or writing.  We interrupt each other on a semi regular basis.  And it never seems to be a good time for interrupting.  More often than not, without thinking, we yell at the other for not paying attention to what the other is doing.  We have no patience for each other.  And with Ryan’s learning differences, I need to show extra patience.  His world has turned upside down.  I need to work on patience more now than ever and be accepting more of his actions.

On top of this, I have little patience for the length of time this homeboundness is lasting.  (I know, not a real word) When will it end?  I’m going crazy here!  If something doesn’t give soon, I don’t know what I’m going to do!  Patience, I keep telling myself, patience!

So what to do?  I am practicing  diligently to become more patient.  At the beginning of this post, I mentioned the space of time between the match and the fuse.  The moment between when something happens, to the moment I open my mouth, or internally scream.  The time I will ask myself, how am I going to react?  How important is it?  I ask myself, do I want to cause myself to suffer, or others to suffer when I speak harshly?  Or do I want to cause myself to suffer when I become impatient with traffic, or any other time when I’m faced with something that isn’t going how I expect it to go? I try to find that space, to slow down time, so that I can give myself a moment to choose how I’m going to act or react.

The focus for working on patience is all on me, not on who or what is the object of my impatience.  The physical and mental suffering cause by impatience should be enough to get me to work on changing.  I can not change others, I can only change myself.  Sometimes I am extremely hard on myself and I cry over my inability to be a better mother or wife.  But then, I come back around and realize that I am only human and that it is in the practicing and awareness of my behavior that I can slowly but surely change.  And I vow never to look up to the heavens again and yell “Give me patience!”

 

 

 

 

The following has been written by a guest, my husband and Ryan’s father, Ira. Enjoy.

Melissa asked me to write a guest article for her blog about life with Ryan, specifically about Ryan’s experiences in scouting which had a very positive impact on his life and ours.  One of the things that Melissa and I found in raising a child with learning differences and ADHD is that structure is very important.  Structure at the home and in school is critical, but outside activities also require structure, and we found that Cub Scouts and Boy Scouts worked extremely well for Ryan in this regard.  

Ryan and I were originally in YMCA’s Indian Guides program while he was in kindergarten and 1^st grade, and once he was too old for that program, one of the families in our group suggested Cub Scouts and so we gave that a try.  Cub Scouts is run by the Boy Scouts of America (BSA), and goes from 1^st through 5^th grade.  Cub Scouts are organized at grade level in Dens within a larger Pack of 1t through 5^th graders that is usually centered on an elementary school.  The Dens usually meet monthly and are managed by an adult Den Leader who prepares activities for the Scouts to accomplish during the meeting, helping them to learn skills and information relevant to scouting and the community.  There are usually outings as well including field trips and camping trips.

All Cub Scouts wear the Cub Scout uniform to their meetings, and I think one of Ryan’s proudest days was the day he first put on his uniform.  It really made him feel a part of something and Cub Scouts provided a good structure for Ryan to develop friendships with some of the boys in his den and in the pack as well.  Making friends in the school setting was not nearly as easy for Ryan, so Cub Scouts was a big help for him.

In 6^th grade, Ryan transitioned into Boy Scouts, and he joined a large, experienced troop with a great ScoutMaster and troop leadership team.  Boy Scouts goes from 6^th grade until age 18, when a Scout becomes an adult and is officially “aged out” of scouting.  Boy Scouts are organized by Troop, usually in a geographic area with Scouts from multiple middle and high schools participating in the same troop.  Troops are organized by Patrol, with scouts in the same age and/or grade becoming a part of a patrol that will progress through time and ranks in scouting.  

Scouts progress in scouting through the accomplishment of required demonstration of skills like tying knots or building a proper campfire and learning such as safe practices for hiking and swimming activities.  The troop and patrol meetings, as well as the outings and camping trips provided Ryan with excellent structure for learning and social interaction.  Scouts have opportunities for leadership positions within the troop, and as they grow older and advance in rank, have the opportunity to help guide and teach younger scouts.  

Ryan was even able to become a Den Chief which is a Boy Scout who assists an adult Den Leader in leading a Cub Scout den.  This helped to teach him responsibility, as he was required to interact with and assist the adult Den Leader, and it was great for his self-esteem, as I really think it made him feel good to help the young Cub Scouts.  

Scouting got him outdoors and camping overnight without his parents, giving him a sense of independence.  And being outdoors and able to learn and explore where he was not in a classroom or online enhanced his learning experience.  Interacting with, watching and learning from older scouts was also great for Ryan as it gave him something to model his behavior after. 

The variety of outings, from backpacking to camping, whitewater rafting, horseback riding, fishing and much more allowed Ryan to try and experience many activities in a safe environment that he might never would have tried otherwise.  Boy Scout summer camps also allowed him to learn to be away from his family for a full week in a fun outdoor setting where he worked on merit badges and did all kinds of fun activities.  

While I was an Assistant Scoutmaster and led many outings, I maybe went on only a third of the outings that Ryan went on because I wanted him to experience scouting without thinking that he had me there to help him.  I think that really helped him to develop more into his own person.

The troop meetings, patrol activities, rank advancement requirements and merit badges also gave him good structured activities and learning, and the various adult leaders in the troop provided him with excellent guidance as well.  The structured setting of achievable goals, be they rank advancement requirements, achieving higher ranks, merit badges, or leadership positions in the troop were also beneficial to Ryan as he could set his sights on specific goals and track his progress. 

At the same time, this was not an easy and smooth process, as attaining a new rank was a minimum of six months of work and outings, and the merit badges each required work ranging from several hours to several months of work.  Keeping Ryan on task was not easy, and mastering some of the skills posed interesting challenges.  But through the structure of scouting, with the adult leaders, elder scouts, and the program itself, Ryan was able to prove to himself that he could accomplish quite a lot, learn many new skills, have a great deal of fun and experience new activities and places, and gain good friends along the way.  

I should also mention one other thing about BSA on this topic.  BSA is very aware of the needs and challenges of children with learning differences and disabilities, and has resources available for troops and adult leaders to help these scouts succeed.  Our troop had two scouts who were on the autism spectrum and a few others with learning or emotional differences, and we truly helped these scouts succeed in the troop.  It also helped the other scouts to learn how to interact with and help the scouts with special needs, adding to their own scouting and life experiences.

When Ryan was 16 or 17, he was the oldest and highest ranking scout on a couple of troop outings, so Ryan became the senior patrol leader for those outings, helping to make decisions about how the outing was to be run and what the schedule would be for the outing.  He was the leader of all scouts on these outings, regardless of their age, so he had to learn to lead in different ways depending upon the age and experience of the scout.  He also needed to learn to rely upon and trust his assistant leaders on those outings and work closely with the adult leaders on the outing.  This level of leadership for him was really important in his development as well, as it required him to plan and think more about the scouts and the outing than he otherwise would.

Of course, in Boy Scouts the ultimate goal is to attain the rank of Eagle Scout, which I believe less than 5% of all who enter scouting actually attain.  Attaining this goal requires an extraordinary amount of work and planning, and the final Eagle Scout Service Project, where the scout designs, plans and leads the work on a community service project, and then documents everything, is very complicated. 

For an individual with learning differences like Ryan, this was a monumental challenge.  Again, the structure of BSA, the adult leaders and mentors, other scouts in the troop who attained the Eagle Sc

Melissa asked me to write a guest article for her blog about life with Ryan, specifically about Ryan’s experiences in scouting which had a very positive impact on his life and ours.  One of the things that Melissa and I found in raising a child with learning differences and ADHD is that structure is very important.  Structure at the home and in school is critical, but outside activities also require structure, and we found that Cub Scouts and Boy Scouts worked extremely well for Ryan in this regard.  

Ryan and I were originally in YMCA’s Indian Guides program while he was in kindergarten and 1^st grade, and once he was too old for that program, one of the families in our group suggested Cub Scouts and so we gave that a try.  Cub Scouts is run by the Boy Scouts of America (BSA), and goes from 1^st through 5^th grade.  Cub Scouts are organized at grade level in Dens within a larger Pack of 1t through 5^th graders that is usually centered on an elementary school.  The Dens usually meet monthly and are managed by an adult Den Leader who prepares activities for the Scouts to accomplish during the meeting, helping them to learn skills and information relevant to scouting and the community.  There are usually outings as well including field trips and camping trips.

All Cub Scouts wear the Cub Scout uniform to their meetings, and I think one of Ryan’s proudest days was the day he first put on his uniform.  It really made him feel a part of something and Cub Scouts provided a good structure for Ryan to develop friendships with some of the boys in his den and in the pack as well.  Making friends in the school setting was not nearly as easy for Ryan, so Cub Scouts was a big help for him.

In 6^th grade, Ryan transitioned into Boy Scouts, and he joined a large, experienced troop with a great ScoutMaster and troop leadership team.  Boy Scouts goes from 6^th grade until age 18, when a Scout becomes an adult and is officially “aged out” of scouting.  Boy Scouts are organized by Troop, usually in a geographic area with Scouts from multiple middle and high schools participating in the same troop.  Troops are organized by Patrol, with scouts in the same age and/or grade becoming a part of a patrol that will progress through time and ranks in scouting.  

Scouts progress in scouting through the accomplishment of required demonstration of skills like tying knots or building a proper campfire and learning such as safe practices for hiking and swimming activities.  The troop and patrol meetings, as well as the outings and camping trips provided Ryan with excellent structure for learning and social interaction.  Scouts have opportunities for leadership positions within the troop, and as they grow older and advance in rank, have the opportunity to help guide and teach younger scouts.  

Ryan was even able to become a Den Chief which is a Boy Scout who assists an adult Den Leader in leading a Cub Scout den.  This helped to teach him responsibility, as he was required to interact with and assist the adult Den Leader, and it was great for his self-esteem, as I really think it made him feel good to help the young Cub Scouts.  

Scouting got him outdoors and camping overnight without his parents, giving him a sense of independence.  And being outdoors and able to learn and explore where he was not in a classroom or online enhanced his learning experience.  Interacting with, watching and learning from older scouts was also great for Ryan as it gave him something to model his behavior after. 

The variety of outings, from backpacking to camping, whitewater rafting, horseback riding, fishing and much more allowed Ryan to try and experience many activities in a safe environment that he might never would have tried otherwise.  Boy Scout summer camps also allowed him to learn to be away from his family for a full week in a fun outdoor setting where he worked on merit badges and did all kinds of fun activities.  

While I was an Assistant Scoutmaster and led many outings, I maybe went on only a third of the outings that Ryan went on because I wanted him to experience scouting without thinking that he had me there to help him.  I think that really helped him to develop more into his own person.

The troop meetings, patrol activities, rank advancement requirements and merit badges also gave him good structured activities and learning, and the various adult leaders in the troop provided him with excellent guidance as well.  The structured setting of achievable goals, be they rank advancement requirements, achieving higher ranks, merit badges, or leadership positions in the troop were also beneficial to Ryan as he could set his sights on specific goals and track his progress. 

At the same time, this was not an easy and smooth process, as attaining a new rank was a minimum of six months of work and outings, and the merit badges each required work ranging from several hours to several months of work.  Keeping Ryan on task was not easy, and mastering some of the skills posed interesting challenges.  But through the structure of scouting, with the adult leaders, elder scouts, and the program itself, Ryan was able to prove to himself that he could accomplish quite a lot, learn many new skills, have a great deal of fun and experience new activities and places, and gain good friends along the way.  

I should also mention one other thing about BSA on this topic.  BSA is very aware of the needs and challenges of children with learning differences and disabilities, and has resources available for troops and adult leaders to help these scouts succeed.  Our troop had two scouts who were on the autism spectrum and a few others with learning or emotional differences, and we truly helped these scouts succeed in the troop.  It also helped the other scouts to learn how to interact with and help the scouts with special needs, adding to their own scouting and life experiences.

When Ryan was 16 or 17, he was the oldest and highest ranking scout on a couple of troop outings, so Ryan became the senior patrol leader for those outings, helping to make decisions about how the outing was to be run and what the schedule would be for the outing.  He was the leader of all scouts on these outings, regardless of their age, so he had to learn to lead in different ways depending upon the age and experience of the scout.  He also needed to learn to rely upon and trust his assistant leaders on those outings and work closely with the adult leaders on the outing.  This level of leadership for him was really important in his development as well, as it required him to plan and think more about the scouts and the outing than he otherwise would.

Of course, in Boy Scouts the ultimate goal is to attain the rank of Eagle Scout, which I believe less than 5% of all who enter scouting actually attain.  Attaining this goal requires an extraordinary amount of work and planning, and the final Eagle Scout Service Project, where the scout designs, plans and leads the work on a community service project, and then documents everything, is very complicated. 

For an individual with learning differences like Ryan, this was a monumental challenge.  Again, the structure of BSA, the adult leaders and mentors, other scouts in the troop who attained the Eagle Scout rank, and Melissa and myself, helped guide Ryan in this process and achieve this amazing goal.  Scouting is complicated but structured, challenging and fun, and Ryan was able to experience it all and in the end succeeded to the point where he attained the rank of Eagle Scout, something that will stay with him fe rest of his life, for as they say, “Once an Eagle Scout, always an Eagle Scout”.  

How many of us have memories of when we were young playing with Legos?  I wasn’t lucky enough to have a set of my own, but I had a set of friends who were twins, and whenever I went to their house, all I wanted to do was play with their set.  In the 60’s and early 70’s the Lego sets were primarily ones that you could build houses, or cars, not the extravagant sets or the large multi sized boxes of different colors and shapes that we can get today.  Nor could we go to mecca – an actual Lego store!  So how awesome was it that Ryan became such a fanatic about them at a young age and continues to be one to this day. 

These little cubes became such an integral part of his development.  Ryan struggled with fine motor skills and putting Legos together, helped him with that.  Of course we started with Duplo, the larger sized blocks when he was a toddler, which helped his little hands work with larger blocks.  Then he progressed to the regular sized Legos.  Naturally, we had, the blocks everywhere!  Most of Ryan’s life, we’ve had the blocks everywhere!  And I truly mean everywhere.  In the kitchen, in the family room, in the living room, in the bedrooms.  Under chairs, under couches, in the nooks and crannies in the kitchen.  So of course in the middle of the night when we would walk through the house without shoes on, we’d step on one, and oh the pain!  We’d kick them and they’d go skittering across the floor in every direction!  (Annie, and my book club mates, that’s for you!!)  Years later, we’d still  find LEGO pieces hiding.

As Ryan grew up, he progressed to different sets.  They did cause frustration, and sometimes he’d get so upset that he’d yell and scream and throw the partially created thing across the room.  Even helping him out sometimes was a struggle.  His attention span was so short and we just couldn’t get him to settle down enough to get back to the project.  But this never stopped him from going back to it the next day.  His unwillingness to give up entirely was something that we would see in just about everything he would try.  As he grew older, we also experienced Ryan’s ability to super focus, something typical of people with ADHD.  Once he would get started on a LEGO project, he could sit for hours working on it without a break.  He’d sit there talking to himself, or singing to himself.  We knew that if he started on a project, we wouldn’t be able to interrupt him.  So we learned to talk to him before he started to set time limits,  or we wouldn’t’ let him start if we knew that we needed to go somewhere or do something else. 

Now as a college student, Ryan  hardly has any time to work on new projects.  This morning, he pulled out a project that he started on months ago and finished it.  He was so excited and the end result is so cool.  It gave him something to work on and succeed at.  He’ll put it in his room with all of the other (many other) incredible things that he’s made over the years.  I don’t know what he’s going to do with them all.  But that’s OK.  They all have a special place in his growing up with ADHD.