Autism Touches Every Aspect Of Your Life

Autism sucks. At times it contributes to immense suffering for both the person with autism and his/her family. Sometimes it just does. Period. End of story.

Frankly, I have it easy if you consider the many behaviors that encompass the entire spectrum of people with autism. There are those people who cannot speak. or toilet themselves or self-harm. My sons have none of these issues. We are fortunate.

But sometimes I get weary of the constant pushback.The whole I say “yes”, so he says “no”. The fifty pokes to my arm everyday. The constant giving of some of the deepest parts of myself and getting very little back in return. The feeling that I am doing too much, or not enough, and either way believing whatever it is I am doing; I am most definitely not getting it right. Sometimes it is downright discouraging feeling that your choices are limited, as is your pocketbook, in your ability to get your children the help that they need. And for those of us facing mental health issues along with autism the chances to obtain needed services decrease even more until the quagmire you are in looks a lot like quicksand and it feels that way too.

Yes, I know that my boys are teenagers and some of this is normal teenage behavior but often it feels like it is teenage behavior on steroids and the doses are getting larger by the minute.

Over the years, I have heard comments such as “This too will pass.” Will it? When? Or “You are building character.” Seriously? We have enough character in this house to write our own sitcom. We don’t need anymore. So now, after all those years of worrying about offending others; I no longer put up with those people who “give you the look” or make”kindly” suggestions on how you could improve your children’s behavior. To them I suggest: you are not fighting the daily battle so you have no say. Keep your thoughts to yourself. I don’t need them and neither does anyone else who is doing their best day in and day out.

Maybe someday things will get easier for our kids. There will be less bullying. There will be more services. Schools will do what is right and give kids what they need to reach their full potential instead of fighting parents every step of the way. But until that time, parents are here engaged in a daily battle for their kids rights and it is sometimes beyond exhausting.

So the next time you see a special needs family don’t judge. Just give them a smile or a kid word and know they are dealing with more than you will ever have to. Then go about your business thankful that your family is doing well.

 

 

 

Beets And Betty Davis Eyes

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BEETS

Several years ago, in preparation for an upcoming trip to Scotland, I started working ernestly on our family trees and found we are related to many Kings and Queens from France, England, the Netherlands, etc. Needless to say this has provoked many interesting conversations around our house.
Andre: Beets? Beets? You know I don’t like beets.
Me: You are going to have to try them. They will taste great.
Andre: I know what happened to the kings in our family
Me: What
Andre: Their mothers fed them beets
Me: Eating beets has never killed anyone
Andre: Want to make a bet? I bet if you analyzed their stomach contents you would find beets.
Me: Why Do you think that?
Andre: Anything can be hidden in beets
(Not to be outdone) Paul: Yeah the color hides everything
Andre: I am sure they were poisoned with beets
Me: Doubtful. Who would want to poison them?
Andre: Their mothers
Me: WHATTTTTTTTT?  Mothers would not poison their children.
Andre: Oh yes they would
Me: Come on, Andre. You are letting your imagination run away with you
Why would a mother do that?
Andre: Because they want the power.
Me: What?
Andre: Women didn’t have power and they wanted it. It’s been that way through history. Mothers always want to find a way to control their children. You can’t deny it can you?! And beets were the way to power.
Me: You will still be eating your beets.
Andre: Drats. I thought this little history lesson would change my history with beets.
Me: No way, dude.

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BETTY DAVIS EYES

The things your kids share with you in the car.
Andre: I think it would be awesome to be able to read someone’s mind.
Me: Why is that
Andre: Because you could do all sorts of wonderful things for them like buy them the puppy they have always wanted.
Me: Andre, you are the one who wants a puppy
Andre: I’m just saying…you know there would be one time when it wouldn’t be so good to know what someone is thinking.
Me: When would that be?
Andre: When they are sitting on the toilet going to the bathroom. I mean the things that go through your mind when you are on the toilet…well they are just not things you want others to know
Me: Is that why you spend 30 minutes at a time in the bathroom?
Andre: Might be

 

13 And Counting

I remember the first time I saw Gracie. She was sitting on her foster mother’s lap, so tiny and delicate, that she looked like a doll. She was a preemie so everything about her seemed fragile and small. I fell in love with her right then and there as I stared at the tiny 3×4 inch photo in my computer screen; engraving her sweet face on my heart forever. Truly, it was love at first sight and I was bound and determined that she would become our daughter. I thank my lucky stars that my dream came true because everyday with Gracie has been a delightful dream with a mixture of happiness, joy, and a pinch of awe thrown in for good measure. She truly is amazing!

Today Gracie turns thirteen. It is hard to believe that I will never again be raising a mere child. Instead, I am guiding young adults towards the time when they leave the nest…hopefully for good.

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Since Gracie is a now an official teenager, it means I have four teens living in my house. Maybe I should say co-existing, as war could erupt any minute when you are stepping through emotional teenage land mines which are scattered, undetected, here and there. Gracie assures me that she will not act like a teen but she is already rolling her eyes and using THAT tone of voice which indicates that somehow I have become the absolute dumbest person ever to live on this planet. Forget the 55+ years of experience, the college degrees and my affable personality…I am soon to be regulated to the status of something below pond scum.

While I am excited about someday becoming an empty nester (finger crossed) I do have to admit I miss those times when my children thought I could do no wrong, when they believed I was smarter than G*D, and when the little things I did brought them such pleasure. Those were simpler times though I didn’t recognize them as such. I often viewed them as chaotic with all the meltdowns that two children with autism could bring. But now… well, even the meltdowns don’t seem quite as bad as when I was in the midst of them and I can look back and be proud of how I handled some situations that would tax the patience of a saint. Not to say I handled them all well but I did GOOD ENOUGH and that is just fine with me at this point in the game.

Today is one of those momentous days. Time and perceptions will shift for both Gracie and I as the label of TEEN is applied like a gooey sticker to her soul. May we each grant the other grace and dignity in the coming years as she grows wiser and my brain cells shrink in number. May we create memories that sustain us and may we see the best in each other instead of the worst. For the teenage years are upon us…may we both survive them with patience and our sense of humor intact! And may Gracie happily survive the impact that autism has on a family and a sibling..she has done a remarkable job thus far.

Happy Birthday My Sweet, Talented, Gracious, Fun-Loving And Hard-Working Baby Girl! You are my Superhero!

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“FOR YOUR OWN GOOD” List

I don’t know about you, but there seems to be an exclusive list that it handed to each woman during the heat of labor which is promptly and conveniently ignored until the first child heads off to school. It is then, during Kindergarten Round Up, that you realize that every parent in the building decides what kind of person you are after watching your child interact for exactly 4.2 seconds and he is doomed to be a social pariah for the rest of his educational career. It is then, at that exact minute of total mom failure, that THE LIST suddenly re-emerges only to hang over our heads for eternity, flapping in that empty space that our brains used to occupy.
Every mother knows about THE LIST. It consists of all the things our kids must do at least once so that we can check the box that verifies to the world that we ARE A GOOD MOM.
Trying new food. The latest…brocollini….images-1
Yearly pictures at Sears…oops missed that one…but now that I am aware of that fact so by next Tuesday it will be done…semi-check.
Playing the piano and while he may not ready for Carnegie Hall, he does know where middle C is located…images-1
Now B is the sports minded one in our family but because two of our three children get crazed if something as small as an ant touches them, trying to knock out athletic activities…well… it’s a challenge. If I had my druthers I would just scratch that whole section off THE LIST because several family members consider high quality endurance sports akin to laying on the couch and dipping ruffled potato chips into a savory dip. (the endurance part comes when you have to turn the chip around and dip again being careful not to double-dip)
But I have to admit that I do have a fear that scratch outs might just not get you into heaven so I persist in introducing my kids to new sports, knowing in my heart of hearts, that is what all GOOD moms do. That feel-good, doing-the-right-thing, going for Mother Of The Year, attempt is what lead us to the Broken Leg Ice Skating Rink yesterday afternoon where the kids tried ice skating for the very first time.
 I will admit that sometimes it seems as though it takes a while for my kids to get comfortable with new activities. First, we have to check out each and every toilet in the entire facility. If the seat is comfortable then my kids might give it a try. If not, we are OUTTA there thanks to Andre’s unrelenting complaints about the lack of high-quality plastic engineering.
Next comes the vending machines. Anything that has hidden ingredients that make one of my kids break out in hives is considered an immediate success and suddenly every one wants a buck to insert into the machine as they rapidly make their way towards anaphylactic shock.
Finally, throw in a 16-year-old cashier who is making minimum wage but will answer every one of the 20,000 questions thrown at them about the history of said sport…the equipment used and the rules of the sport, then participation is a definite maybe because all bets are on that they can continue with the questions until the place closes for the evening. Better yet, if the cashier can quote numerous safety statistics; then its a go-home because no sport is even safe enough for my boys. Yes, even contemplating sports can be an exhausting endeavor.
So after spending one half- hour tying and re-tying the skates, using the bathroom…for the third time… and learning to walk on blades; the time had come for the kids to make their way onto the ice. If, as the old adage goes, you can smell fear; then the fumes around our family was like the pungent odor that follows us around for three hours after eating grandma’s chili. We just couldn’t shake it. As we left the bench, feet started going every which way but forward and the sound of our bottoms slapping the ice…HARD… reverberated throughout the arena. To top it off, I pulled my back out trying to hold up one child while falling down with another. Mom was done and judging from the little faces surrounding me, the vending machine owner was about to become a very rich man. AGAIN.
Yet, we persisted. Paul put his game face on and after one trip around the rink fell and got a bloody nose that spurted ten feet.  Gracie whined until her daddy escorted her like the princess she is around the rink. But I knew all was lost in regards to Andre when he spent ten minutes making it half-way around the rink with his toes turned in towards the wood paneling the entire time. Never have a seen a child so happy as when he took his blades off of the ice. His face actually beamed so brightly he was in danger of melting the ice.
Later, after exiting the rink, Andre looked up at me and said, “Well, those were absolutely the worst minutes I have ever spent in my entire life!” And needless to say, his assessment didn’t get any better despite being bribed with hot chocolate by B.
On the way home, Andre talked about the experience. His take?
“Well, I am glad that is over. I did it once, it’s a no-go and thank goodness I will never have to do that again. Now, mom, what else can we cross of your list of things I have to do?”
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“What list?””You know, the one that you have that makes me try everything for my own good even though we both know I am going to hate it. But still you try. Again and again. Pushing me to be a better kid so you can feel better about yourself as a mom. So really, if you think about it, this list is really about you and your feelings of inadequacy. Frankly, I think a therapist for you would cost a whole lot less than this “contrived family time.” I think that is something you need to seriously contemplate before one of us dies during these little mini-olympics of yours.”

And with that he was done.
But I’m not.
I want to know… how he knew about… THE LIST?
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Best Qualities As A Mother

UPDATE

Since B stated 18 months ago that he might want to divorce we have done a lot to try to save our relationship. This includes a Marriage Encounter weekend, his therapist, my therapist and a joint marriage therapist. I have decreased my yelling to a trickle, have kept the house in good shape and have lost weight. Frankly, things had been improving for close to a year but lately I have noticed that we have been regressing. More grudges, less sex, 66% less dialoging, etc. I am a very intuitive person and I “feel” these changes and recognize them for what they are and lately I have been feeling really anxious about them.

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I have never been an anxious person even when I have had plenty to be anxious about. For 57 years I have kept most of that anxiety stuff swept under the rug. But lately, it has occurred to me that as B distances himself my anxiety rises. It is an uncomfortable place to be. Sometimes it even makes me question my sanity because I tell him I am feeling the distance which he denies but then three weeks later at a therapy session he uses the words and admits that when x happened he distanced himself all the while denying my concerns for the past weeks.  It is a crazy way to live.

BEST QUALITIES

Recently, we had a dialogue question that asked each of us to talk about our partners best qualities as a parent. In the allotted 10 minutes I wrote about 7 qualities that B has that I think make him a great parent.

Now I know in dialogue you are not supposed to judge the other’s response because they are based on “feelings.” And feelings may be factually true or not but the bottom line is that they are what they are. So when B wrote about the qualities he admired that I had as a parent it basically came down to the fact that “I cared for my children.” To say I was hurt that this was the only quality he listed was an understatement.

Everyone cares for their children. You care for your dog. You care whether you have enough toilet paper in the house to last the entire week. Caring for your children really doesn’t get any accolades in my book. It is something we all do… even badgers, skunks and probably even one-cell amoebas.

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So I took this to my therapist. She wanted me to write down what I wished he had said about my good qualities as a parent. Here goes:

  1. I wish he had said that I am good about seeing or initiating those deep soulful and meaningful talks when they need them to boost their confidence, understanding of life or just need to express their concerns. I wish he had said he knew that most of the time they seek me out which shows that they trust my love and advice.
  2. I wish he had said that I love my kids fiercely and deeply and that they know that they can count on that love and can trust me to be there for them forever.
  3. I wish he had said that my children know I believe in them and that I think that they can accomplish whatever it is that they set out to do and that by knowing this it will take them far in life.
  4. I wish he had said that he knows I am their biggest fans and that I cheer them on with encouragement when they are lacking the spunk to make that “final touchdown” in whatever it is they are doing.
  5. I wish he had said I am a “good” parent far more often than a “bad” one and that even when I fail it is not intentional or malicious.
  6. I wish he had said that raising six kids, two of whom have autism, would be a tough job for anyone and that it is amazing I don’t lose it every day.
  7. I wish he had said that my kids had experienced so much of this world thanks to me and that if it was left to him they would not have.
  8. I wish he had said that I try my best to teach them the important things that they will need to navigate their lives now and in the future.
  9. I wish he had said that I am “good enough” parent some of the time (which is okay) and a great parent when it really counts.
  10. I give good hugs.
  11. I wish he had said that I encourage my kids to take risks which creates opportunities for them to believe in themselves.
  12. I wish he had said I am an honest parent in dealing with my kids and all the people we have to deal with because of their interests and their issues and that my honesty helps provide desperately needed clarity.
  13. I just wish he had said I am a good mother and he could not manage without me.

And while this exercise was difficult because I kept wanting to explain or add in the negative to balance it all out, I didn’t because this is my gift to myself and a tribute to who I am as a parent. I don’t NEED B to validate it…but it would have been nice.

Breaking Records

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I’ve lived with autism for 16 years. I have yet to understand it. Take Andre. High school student who is also taking college classes and getting A’s and B’s. Smart, right? Then why can’t he change his underwear?

Seems to me that he is on some sort of record-breaking quest because recently I have noticed a pattern which I am sure Guinness World Records would love to have a stake in.

Record Breaking Attempt #1.

Number of Days Between Showers….SIX

Yes, six stinky days. Believe me, it’s not that we are willing participants in these record-breaking attempts. It’s just that life gets in the way. Often we take notice after Andre walks by smelling like road kill and the following conversation ensues:

“Honey, when was the last time Andre took a shower?”

“I don’t know. I thought it was your month to remember all his idiosyncracies.”

“No, my month was last month. This is your month.”

“No, last month I caught him hiding cookies in the downstairs bathroom so he could have a snack when he was on the toilet. It is definitely your month this month.”

And then all is revealed when little sister pipes up with:

“Well this week is my week to clean the bathroom and he hasn’t been in there once!”

AGGGGGG…epic parental fail.

AGAIN

Record Attempt #2.

Number Of Days Without Changing Underwear…..SIX

Yes, I am at fault here. I forget that an almost 6 foot tall person may need reminders to change his underwear EVERY SINGLE DAY. The lazy mother in me is tempted to teach him to turn his skivvies inside out in order to get a few more days use out of them but butt skid marks on the outside just look worse than skid marks on the inside so I am going to let this one ride.

Record Attempt #3.

Number Of Days Gone By Without Brushing Teeth……FIVE

I know this to be true because we just returned from a holiday where I put his toothbrush in his bathroom. On the last day I asked him to go get his toothbrush so I could pack it.

“Toothbrush? You brought my toothbrush with us on vacation? Why would you bother…its our vacation.”

At home I have signs up as reminders to brush his teeth. I have placed multiple toothbrushes in multiple locations. Even at the kitchen sink. And I think that is the problem. There are so many around that, just like dust bunnies, pretty soon they just begin to blend into the scenery. Sadly, little sister who brushes her teeth numerous times a day has cavities galore. Andre…not one. Ever. He is the Anti-Christ of the American Dental Association.

 

Record Attempt #4.

Number Of Times Per Day “I DON’T Wanna” is said. 1,440 x2=1880. That is about every 30 seconds.

“Time to go.”

“I don’t wanna.”

“Did you brush your teeth?”

“I don’t wanna.”

“I think you better start on your homework.”

“I don’t wanna.”

Clean your room. I don’t wanna. Take out the trash. I don’t wanna. Take a shower. I don’t wanna. Come eat breakfast. I don’t wanna. Find your shoes. I don’t wanna.

And so it goes.

I admit, that these things, while annoying, are definitely not life-threatening. YET. But that is exactly the point. Because one day we will no longer be on this earth to monitor (even half-assed) Andre’s idiosyncracies and our fear is that one day his mummified body with rotten teeth laying nearby, will be found in year-old underwear, crushed under piles of pizza boxes and food wrappers that he refused to clean up. And like global warming; we don’t know how to stop this slide toward disaster.

The one positive thing about all this record-breaking talk is that it has spurred me on to try to break one myself.

Record Attempt #1.

Number Of Days I Remain Consistently Sane

I’m going for….

ONE

 

 

 

 

 

On Giving Love When You Have None Left To Give

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Sometimes my house is pure 100% chaos. Sometimes it is as quiet as a lamb. Most of the time it is somewhere in between. But then there THOSE TIMES; the times when Andre digs in and NOTHING I can do will change the trajectory that we are about to embark on.

Change for Andre is difficult. It often is for those on the autistic spectrum. Sometimes that change is as small as using grape jelly as opposed to strawberry on Andre’s PB&J. But more often it is something along the lines of telling him to do his chore.

“Andre you need to empty the dishwasher!” (for the third time)

“I dun’t want to”

“There are lots of things I don’t want to do either but they must be done so empty the dishwasher. NOW”

“I dun’t want to”

This I dun’t want to would go on 100 times if I permitted it. Usually at this point the conversation will escalate to one more warning. Then I head upstairs (with him trying to stop me…pulling on me or poking at me) and take all of his electronics and tell him that he can have them back when his chore is done.  This is followed by ten minutes of attempted manipulation, threats (I’ll put your phone in the sink if you don’t give me back  my stuff) and flat out increased defiance. Finally, Andre will realize that he has gone too far and then resorts to such things as:

“Tell me you love me mom”

“I need love. Give me a hug NOW.”

I want a kiss NOW”

Along with all the demands he begins hanging all over me DEMANDING a hug or a kiss by clawing at me.

Of course, by this time I am worn out and tired of the CRAP. I try to remember where this is coming from inside his head (fear of abandonment/fear of being unlovable/anxiety) and react accordingly. But there are times when giving him what he needs (a hug) feels so ugly and disingenuous after all the chaos and manipulation that I find it hard to wrap my arms around him. I find it hard to find a place in my heart to grant him the grace that he needs. Most of the time I manage to dig it up from G** knows where but there are times it is almost impossible to find and it is at those moments when I feel like I have been swallowed whole, the best parts of me ripped out and flung far and wide. It is at these times when I start crucifying myself for not being able to give my son what he needs because it is such a little thing that feels so big.

Luckily, most of the time I do not get to this place of self torture because as I start to fall down the rabbit hole; I get ensnarled in the tree roots and find a foot hold to make my way up again. But there are times that I would like to keep falling down that rabbit hole just to feel the impact upon landing. To feel the brokenness that results. And when that happens it makes me realize that is probably what Andre is feeling (the impact) and then I find I can go over and give him that hug. A hug that will ultimately mend us both. A hug that that tells him that I love him and he loves me and that we are in this thing called autism together. Forever.

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Mother’s Day

Back-to-School

Today is the first day of school and it is about as good as a man getting down on one knee and slipping a diamond on your finger. For moms all over the world this day sparkles and shines like no other.

I remember each of my children’s first day of Kindergarten. Everyone was excited and a bundle of nerves, parents included. Now it’s old hat as I go through the list that is burned into my brain like a branded cow.

“Do you have your…lunch, notebooks, backpack, pencils, school schedule?”

“Where are your shoes? Did you change your underwear? (yes, this question MUST be asked in my household) Go put on your socks! Hurry! or you will be late!!!”

” You didn’t brush your teeth. Go do it. Andre…the hair…brush your hair! Wait….you didn’t shower, Andre. Don’t argue…DO IT! Paul, go wash your face and put on your medicine. Make your beds!!! What do you mean you don’t like chicken salad…since when?”

And so it goes until all questions have been answered to my satisfaction and off we go, kids slightly nervous and me, the calmest I has been in months with a smile plastered on my face that is wide as the Grand Canyon and remains with me all day. Yes, this feeling is better than any happy pill that has ever been invented!

“You sure sound chipper,” remarks my dad.

“You look great,” another mom comments.

“You have a glow about you!” says the grocery clerk.

And they are right. After a summer of sibling arguments and hearing “I’m Bored;” I have the eau de parfum Ode To School #5 floating about me, the fog has lifted from my brain, and I am glowing more than I ever did when I was pregnant. For today is the first day of school and I happily refer to it as… Mother’s Day!

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Homesick

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At 10:00 p.m. the first night I dropped her off at camp I received the call I had been dreading.

“I’m homesick,” sob, sobbing harder, and then louder.

“My roommates didn’t show up.” SOB, tears falling so hard and fast as they hit the phone it sounded like rain hitting the roof.

“You don’t have roommates?”

“Yes, I convinced two other girls to join me.”

“I hate it here!” WAAAAHHHHHHHHH

“Don’t you like the pool?”

“No, its horrible!” Sniff, sniff, sniff

“Are you learning any new skills?”

“N-o, I h-a-te it h-e-r-e” hicup, hicup, hyperventilate.

“Are you wanting me to pick you up?”

“Yes, come immediately!!!!”

“Honey, by the time I would get there it would be 3 a.m. and I just drove home from their today. I can’t do that and I won’t do that!”

WAAAAHHHHHHHHHHHHH

And the longer we talked the worse it got until I finally realized I was in a no-win situation and she would keep this up until Sunday, the battery power on her phone died, or at the very least until the sun rose.

In exasperation I said to my littlest

“Honey, I have to go, so put on your big girl panties and tough it out. Here’s the thing, you have the ability to choose what this weekend will be for you. You can choose to be miserable or you can choose to be happy, to have a great time, learn lots and create a bunch of memories. It’s your choice. Personally, I would choose happy because that is the only REAL choice you have if you want to have a good life. Start practicing making good choices.”

And then I hung up the phone before it got wet as the  salty drops started to splatter around me.

The Eagle Is About To Soar

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Yesterday my boys, Andre and Paul, received their Life rank in Boy Scouts. It is an amazing feat especially when one factors in all their challenges. Next up: Eagle Scout the final and highest rank. They are already busy deciding what their project will be. It has to be something that benefits the community. They have to plan it, fundraise for it, and organize volunteers to help complete it.

I have to admit I have been a lousy Scout mom. With all the other things I have done in the past or am doing I have rarely attended meetings and only occasional events. It is B who has done on a million hikes and campouts, attended every meeting, flipped pancakes for fundraisers, helped them earn merit badges and has taken a week off of work to make sure that the boys attended Boy Scout Camp. Without B, there would be no Eagles in the making. He has been there for years helping the boys to learn new skills and helping Andre when he falters. I am so proud of all of them.

As I watched Andre yesterday, his autism in full gear for whatever reason, walking in circles and shaking his head; I know that I have the Boy Scouts to thank for all he has accomplished. For all that both boys have. And while I have not always agreed with the policies put forth by the organization, I know that my kids have mastered skills that will benefit them in the future and may well save a life one day. In fact, Andre did earn a rarely given award, the Honor Medal, for saving a life.

So as they enter the final frontier of Scouting I want to congratulate my boys and thank all the adults who have mentored them and pushed them through. All those volunteers who have made Scouting fun and exciting. Because it is a joint effort by all involved and everyone involved are responsible for the fact that our soon-to-be Eagles are about to soar.