Reflecting and Praying!

Wow, 2010 was an amazing and again challenging year. I'm pretty sure that God doesn't want me to get bored....honestly.....a little boredom would be appreciated. REALLY...I would be okay with that.

But when I look back on the past year I have so many positive things to reflect on. When a new year begins I always find myself looking back further than just that year, I tend to reflect on the progress I have seen through the years. This crazy journey I am on with my children requires me to always reflect on where we started and to appreciate just how far we have come. That reflection allows me to remain positive and focused as I start each new day.

Benjamin will turn 16 on January 23rd and he is hot on my case to set up his driver's test. Where did the time go?? I still look at Ben and see the little boy that felt the need to use his tools to take apart everything in my house. Ben was never happy until he had taken something apart, figured out how it worked and sometimes made it work better and other times just smashed it to bits. Hmmm, funny...some things never change. I was just looking at pictures on Facebook of his Rhino, the truck he bought when he was 14 that got rolled at J & H and his current love, the monster diesel that has caused the UPS man and I to see each other more than I thought possible. I used to get excited thinking someone sent something to me or something I ordered came in from Land's End but now I seem to only get packages from www.puredieselpower.com. Don't even get me started on the dating...still taking deep breaths to get through that.

Ben as a child always had unlimited energy and a never ending stream of questions which some felt was ADHD and that medication was a must. But I never went there...although the year I homeschooled him I was tempted. Instead my mind just kept telling me we had to help him learn how to use that energy productively and I had to come to terms with the fact that I was going to hear the word "Mom" a minimum of 1,000 times a day. I needed to learn how he learned, what worked and what didn't so I could help him and those that worked with him. I still chuckle to this day when I see Ben skip across a room because he is excited...it was always like a little release of stored energy. I have been negotiating with Ben since he was three and I often feel that he just gets better at it and I get....well, more tired. Ben and I have a point blank relationship. He has never held back in letting me know what he is thinking or how he is feeling...I just wish sometimes he would curb his impulsiveness and comments so we could have a productive conversation instead of an explosive one but I understand the need to let off some steam too...it's just part of having an intense personality. I have always preferred that his outbursts be with me and not at others...because I love him, I can forgive him and I know the outbursts are often due to his feeling challenged or misunderstood. I walk a fine line with Ben trying to help him advocate for himself and at the same time motivate him to try harder.

I look at Ben and remember the frustrated little boy and the long hours of homework as he struggled to focus and as his struggle with reading, writing and spelling threatened to destroy his self esteem. We have come so far. I rarely have to do homework with Ben, we still team study for exams and I sometimes help him organize larger projects but he is doing well and has maintained his ability to remain in the regular curriculum without LD or special ed help. He is a fighter and I am so very proud of him.

And then there is Danielle, my sanity child...my ray of sunshine. She has an innate gentleness and kindness about her. She has always shined bright even when the attention on her brothers seemed to be greater. I have to remind Jeff and myself that she is a gentle soul, unlike her brothers more powerful personalities and she requires gentle persuasion. In recent years she has come into her own, able to stand up to Ben and put him in his place while getting Sam to do as she asked within a count of 3. Danielle makes me laugh, she and I are kindred souls and enjoy spending time together....of course sometimes during our road trips we all need a little space but really...who wouldn't after being locked in a van together for 10-15 hours at a time. We pick on each other and we laugh a lot. She is simply an amazing personality and I know God sent her into my life to help me maintain some sort of balance. Ummm...good luck with that Danielle.

Danielle is my sports playing, Zumba queen. She is so much more coordinated than me and I know she is going to do great things in this world and continue to be happy. Jeff and her share a special relationship since he is the driver to most of her practices and games. Don't even get the two of them started on John Tesch...they are addicted to his radio show...I get to hear so many random pieces of wisdom. Danielle was an amazing baby and toddler and she just continues to grow and develop into a wonderful, dare I say...teenager. I love you Muttsy!

And Sammy...my amazing big guy. Oh, the lessons you have taught me through good times and bad. I still think about Sam on our road trip this summer climbing mountains, hiking for hours and never ever complaining that his hip hurt...but it probably did. This little trouper went on to learn how to ride his bike, I just watched the video the other night when I was feeling a little sad. He worked so hard to achieve that goal and took such pride in showing everyone what he had accomplished. As I watch the video I can't help but notice how stiff his left hip looks...didn't notice that when we were in the moment. And now as Sam is in his 5th week in a full body brace he continues to amaze me with his compliance and attitude. I would not be this great of a patient and yet he greets me every morning with a smile and a hug. We are quite the pair in the morning, him in his body brace and me struggling to bend over for a hug because my back is so stiff.

I am thankful for the amazing road trip we had this summer, its memories have helped me get through the rough times. As I look at the pictures I smile at the happy times and relive the adventures we had. God surely set that trip up knowing what the next couple of months would bring.

The other night I watched a video when Sam was 3 or 4 and he only made sounds that we hoped would some day turn into speech. Sam still struggles with speech but he has come so far. He has tons of words now and many phrases to address his needs. I still wait and long for conversational speech, active listening and appropriate responses but I am encouraged by the steady changes I am seeing.

In Sam's 10 years he has had more struggles than most of us will face in our lifetime but he never lets that get to him. He just continues on with a confidence and attitude that all of us should learn from.

Ben, Danielle and Sam have taught me to change because that's all I really have control over. I determine how I talk, act and feel and in kind that determines how my children talk and interact with me. Ben's difficult situations challenge me to treat him the way I would like to be treated without bringing in the emotion or negativity that so often can take over our interactions. Both Ben and Sam love attention, but Sam is teaching me the power of positive attention. He requires me to place more emphasis on the things done right than what he attempts and is unsuccessful at. If I get frustrated he is more than happy to follow suit and just shut down. I am a work in progress and if I am tired or anxious I struggle to maintain my composure but I try to remember the lessons Sam is so desperately trying to teach me. I love you big guy!

I have never been a person that made New Year's resolutions...I instead make daily resolutions. I resolve to treat my children with positive attention and to be open to their level of communication. I resolve to focus on the positive aspects of my life and count my blessings. I ask the Lord to guide me every moment of every day...I can't do this life alone. I have often had people tell me I'm an amazing Mom and they don't know how I do everything I do...but if I'm honest...I'm just a regular person that has been put into extraordinary situations and by the grace of God, we get through.

This year I hope to open my heart and mind in order to continue my efforts in building community around Sam. Sam and I have been together since day 1, during hospitalizations, medical crisis, homeschooling and home therapy and everything that has been required due to his medical and immune system issues. We have been through a lot and we enjoy each other and work well together but Sam needs to learn how to interact and work with others too.

This is an issue that is so hard for me.

I get anxious when I see someone interact with Sam and he gets frustrated because they don't understand him. I get anxious when Sam won't show his skills and abilities and I worry that a teacher or therapist will lower their expectations instead of figuring out how to work with Sam. I get anxious when I see another child ignore or treat Sam differently. I get anxious that someone will miss a subtle change in Sam that is a red flag for me that medically something is about to happen. I get anxious that Sam will be overloaded by too much sensory stimulation and his behavior will reflect that. I get anxious that a child may run into and bump Sam causing him to fall on his fragile hip that has just been rebuilt. I get anxious that someone may not recognize that Sam's behavior is a pain reaction and not Sam being stubborn or non compliant. I get anxious that both children and adults will talk less to Sam because he is difficult to understand or he doesn't always answer appropriately. I get anxious that someone may perceive Sam's ability as low due to his limited speech expression instead of giving him other ways to express himself appropriately. I get anxious that someone will misinterpret a hearing issue as a cognitive issue. I get anxious that Sam will get frustrated and shut down. I get anxious that Sam will withdraw and enter his own world.

I...just....get....anxious...

because I love this little boy with all that I am. I will end with something I found on a fellow blogger's site, thank you Debbie at Finding Normal, http://debbie61497.blogspot.com/:

WHEN

When you are the neediest,
He is the most sufficient.
When you are completely helpless,
He is the most helpful.
When you feel totally dependent,
He is absolutely dependable.
When you are the weakest,
He is the most able.
When you are the most alone,
He is intimately present.
When you feel you are the least,
He is the greatest.
When you feel the most useless,
He is preparing you.
When it is the darkest,
He is the only Light you need.
When you feel the least secure,
He is your Rock and Fortress.
When you are the most humble,
He is the most gracious.
When you can't,
He can.
~Author Unknown

Happy Birthday, Sam!!!

Today is Sam’s birthday and he is 10 years old. Where did the time go? What an interesting and amazing journey we have been on and continue to be on.

When Sam was born he changed my world. I had a plan for my life and I was happily in the middle of it. I had gone to college, established my career in Marketing Communications, married the love of my life, began my family and as I looked into the future…I had it figured out. I would gear back my career while my children were little and when they were in school I would again jump into my career where the sky was the limit and I would excel.

Hmmmm, but then Ben began to struggle in school (not part of my plan). I had to regroup, rethink things…so I decided I would have to wait and help Ben while he was in school. Okay, it would be harder to jump back into a career with that much time away but I figured it was still doable.

Danielle was my happy go lucky little girl. She was a happy baby, toddler and jumped into school without any problem. She was my athlete and I had to shuffle my schedule for her practices, games and activities but life was going along great.

And then along came Sam. I had always wanted 3 children. When I was little and played dolls, I had 3 children. Now…I can say that Sam’s arrival changed my world and it was a shock but if I’m being honest…and as I reflect on my life today….God was preparing me. From little on I knew I would have 3 children. Upon the birth of my first 2 I had an overwhelming need to give thanks and give back for the blessings given me by these two children. I volunteered my time at Make A Wish and the Ronald McDonald House. I became familiar with Children’s Hospital, special needs children and was in awe of the many families I met that were on a journey very different from mine and yet I felt we were so alike.

Ben introduced me to the world of learning issues. I began to realize Ben learned differently and we struggled as we tried to figure out how to help him but I was always amazed at his strengths. Ben looked at the world with a level of detail I could not even imagine. We could walk into a place and Ben would always remember so much more, down to the very smallest detail than I could have ever hoped to. Ben taught me how to work with him and that teaching journey included yelling, crying, frustration, feeling hopeless at times, jumping into homeschooling and a whole lot of prayer for guidance…but we have come so far. Ben is a sophomore at our public high school and he requires less and less help from me. We have found the path that works for him…it is not without its hills and valleys but he is moving forward.

When Danielle was born she seemed to give me my balance back. Here was this sweet, kind, caring and happy child that just flew through school with ease. I’m pretty sure when I was little and playing with my dolls I had all Danielle’s. She is my “ray of sunshine”, she is one of my travel partners, she has watched me work with both Ben and Sam and has never felt slighted. She loves and hates her brothers just like any sister would. She certainly doesn’t give them any leeway or treat them as different…well except for her soft spot for Sammy (sorry Ben, you don’t seem to have a spot…she would consider you more of like a rash??).

And then along came Sam…as stubborn as Ben, as creative as Ben, able to get in the same trouble as Ben, happy and caring like Danielle, smiling and laughing like Danielle and yet so very different from both of them. Sam’s journey has not been an easy one. His multiple diagnosis and medical issues have all been a journey of their own…but they don’t for a moment take away from who Sam is. Sam is an amazing little boy that has captured my heart, changed my life, re-directed my goals/career and has challenged me to re-think everything I thought I knew. Today I realize that my original life plan was okay…a little generic but I would have made it work…but now my life is full. I enjoy my time with Sam…him teaching me and me struggling to teach him. Sam has strengthened my faith in God, he has challenged me to be a better person. Over the years I have had to really look at myself, my strengths and my weaknesses, my thinking and my beliefs and I often failed the challenge. And with every failure/challenge and break through is another lesson learned. When I used to volunteer at the Ronald McDonald house I would often see a family going through a challenging episode in their lives and I would think to myself, “how are they continuing…if that were my child…why…how is this going to change their life…what does the future hold for them…what would I do??” Sam has forced me to answer each and every one of those questions.

I never signed up for this journey…I never thought my life would have taken these turns but I’m not unhappy, I’m not miserable…I embrace each day and I simply love my children and my life.

Tomorrow is yet another twist in the journey. My heart hurts for the pain and discomfort Sam will have to go through to have his hip repaired. My heart hurts for my child. But Sam is challenging me again, to get him through this, to not let this define him. As Sam’s mom I have learned that no matter what diagnosis/illness/challenge we encounter…we will not let it define who Sam is or our lives. It may interfere, cause us to re-group, re-think but we will get through this too.

Sam, I love you. I love the way you smile and the way you laugh so I have to laugh with you. I love the smell of your hair against my cheek when you give me my daily hugs. I love running my fingers through your hair and tickling your neck. I love how you rest your hand on my shoulder when you have something to say to me. I love the never-ending, “Mom, Mom, um Mom”. I love how you say “Yesssss” with an elongated s sound. I love how a bad day for you can turn completely around with a diet Pepsi, or a trip to the movies for popcorn and of course, a diet Pepsi. I love how you react to things in nature, not just noticing them but becoming fully absorbed in them. I love how your face lights up when your Dad walks in the door and how his reflects yours. I love how you still smile and laugh in your sleep. I love watching you figure things out. I love how you seem to secretly communicate with our dog Buddy. I love listening to you relive your day as you go to sleep. I love how you walk with your very own swagger and the expression on your face when you run to get your ice cream. I love how you always say please and thank you. I love watching you sing "Happy Birthday" and blowing out your candles...at least twice sometimes three times. I love just being with you.

Sam, I simply love you! Happy Birthday, my big boy!!!

Please everyone, let’s get those prayers going. Pray for God to be with Sam and comfort him, keep him calm, help him to relax. Pray for his surgeon, his anesthesiologist, his pulmonary doctor and all the nurses and medical staff that God would guide them. Pray for Jeff and I to stay strong, to be comforted with the type of peace that can only come from the Lord our Savior. Pray that Sam comes out of anesthesia well and that he adjusts to his brace and is ready to come home in a short period of time. Pray that we are all able to come together at Christmas and give thanks for the greatest gift of all, the birth of Jesus Christ.

Looking For the Easy Button???

This post has been rolling around in my head for quite some time and it's time to just get it out. Wouldn't life be great if we all had an "Easy Button"....or would it?

When Ben began to struggle in school and was diagnosed with Dyslexia and learning disabled in reading, writing and spelling...I would have loved to make all his struggles disappear with just the push of a button.

And don't even get me started on Sam...Down syndrome (push the button), Speech/Feeding Issues (push the button), hearing issues (push the button), respiratory/immune issues (push the button), school/homeschool (push the button), medical emergencies (push the button), diet (push the button), NACD (push the button), and now Perthes??? Let's just get the duct tape or gorilla glue and secure that button into a permanent pushed status.

As a volunteer for our Wisconsin NACD Chapter, as a parent liaison in our school district, and as an active advocate for children with special needs and their families I have had the wonderful opportunity of meeting many wonderful children with special needs and their families. I know in my head that every child is unique and you can not compare one child to another but yet my heart would often compare Sam to other children with and without Down syndrome. My heart would hurt as I listened to a girl with Down syndrome easily and expressively communicate her thoughts and ideas while Sam struggled to get out any words. My heart would hurt when another little boy would be up and walking at 15 months and Sam didn't take his first step until after he was 3 years old. My heart would hurt when other children could easily follow instructions and Sam needed constant repetition and reinforcement. My heart still hurts when Sam is sick or hospitalized while other children are running and playing and having fun. My heart now hurts that Sam will have to go through a major hip surgery and be immobile after we spent the last year finally getting him mobile and liking it.

Where the hell is that EASY BUTTON???

Sure that button would have saved me from a lot of heartache, it would have freed up a ton of my time, it would have given me less gray hair, less stress on my mind and body... but it also would have taken away some other things.

Like the hours of time I got to spend interacting with my boys. I'm not going to sugar coat it and tell you that the hours doing Ben and Sam's NACD program were always joyful and uplifting....that would be a load of crap. But if I'm honest with myself, the time spent working with both of them has strengthened our relationship, has built a bond, has taught us how to treat each other and how to depend on each other. We have yelled, screamed, laughed, cheered and cried together. I cherish the time Ben and I spent researching Dyslexia, the time I spent reading Walt Disney's biography to Jeff and Ben, the time Ben and I spent listening to and enjoying audio books, helping him work with Dragon Naturally Speaking, riding bikes while doing spelling and digging holes while studying history.

Ben's struggles have shaped him into the young man I am proud of today. He still challenges me...but he also makes me laugh. His quirks and differences make me appreciate the unique person he is. I am happy I took the time to work with Ben and figure out how he learns. I smile at his huge vocabulary...knowing he would never be able to spell most of the words he uses but his use of them is his skill. Ben is quick witted, funny, and has a heart of gold under that tough guy exterior. He's going to be an awesome adult.

Oh and I don't want to leave out my life coach. A life coach is a professional that deals with relatively healthy people who want to improve their lives in specific ways, such as changing careers, finding a healthy relationship, taking their business to a new level, losing weight or deepening their self-understanding, for example. They deal with stress management as well as time management, goal setting and other key areas of change to help their clients lead more balanced lives that better reflect clients’ personal values and priorities. It differs from therapy in that the focus is more on the present and future than the past, more on goals and behaviors than emotions and emotional patterns, and there is a more equal balance of power between the coach and client than between the typical therapist and client.

My life coach is Sam. Sam may not be a professional but he has certainly improved my life and deepened my self-understanding. He has created stress and by example has taught me how to deal with stress. My stress over Sam's medical issues and his going into respiratory distress can't even compare to his struggling to take a breath or his work to regain his physical abilities after surgery. Sam is not worried about the problems of tomorrow, he lives in today, he lives in the moment....he doesn't compare himself with others, his life is at his pace. Many people would argue that Sam's life is simple because of his lack of understanding. I would beg to differ...I think Sam's life is simple because he chooses it to be simple and he is leading by example. What would we all be like if we were more like Sam? Sam places little value on material items, he values his family and friends...he values all people. Sam doesn't care if you are a high paid executive or a homeless person, a movie star or a janitor...Sam will speak to you and treat you the same. Sam never forgets to pray, he is amazed by everything around him from the ant on the driveway to the Grand Tetons. Sam expresses himself through actions instead of words. He lives each day fully, smiling and laughing often, but Sam is strong willed, he tells you what he is thinking, he challenges you to change how you work and interact with him. Sam, like Ben can be a force to be reckoned with....but when they feel understood, when they feel appreciated, when they feel that you have listened to them they are compliant and how they think and figure out things will amaze you.

There is no "Easy Button" in my life just as their is no magic twitching of my nose like in the show Bewitched to get my house cleaned. Life is what it is...the difference is how you perceive it.

Your living is determined not so much by what life brings to you as by the attitude you bring to life; not so much by what happens to you as by the way your mind looks at what happens. Kahlil Gibran

Excuse Me While I Have A Mommy Moment!

Okay, if you have been reading my posts you know I just got back from a wonderful road trip. Well while I was gone, my oldest...my oldest baby grew up in the blink of an eye.

Alright...in all honesty...before I left he had already hit 6 feet and at 15 I knew it was just a matter of time and yet it hit me like a brick wall.

It wasn't the impending driver's license that set me over the edge and made me ask questions like a maniac and put pictures back in my head of a 3 year old Ben working on his tractor in our drive way. Before I left he purchased a huge Ford dually truck (or however you say that). I was okay with it because he didn't have a driver's license yet and I had time to adjust and it was something that had a motor and Ben has been buying and working on things with motors since he was 5. NO, while I was gone he even got his temps. The funny thing is I never had to study with him for this test, I never had to spend hours reviewing information. Schools could learn a lot about students and what they are capable of if they could dangle a carrot like a...driver's license to each student. It's amazing that a kid that can struggle so much with reading and writing and let's be honest...has the attention span of a flea...can buckle down and do whatever it takes to get those temps. Wow, I would love to bottle up that attention span and drive for final exams in Biology and World Studies...but unfortunately that's not really possible.

No the part that put me over the edge, made me flashback to his childhood, made me sound like a babbling fool was when he announced he had a girl friend. I know he's growing up but...REALLY....a girl friend. It's amazing how news like that made me look at him differently. Yeah...I saw all the signs...girls smiling and saying "Hi" to him when we walked through the high school, girls checking him out when we were on vacation in Florida, Danielle telling me about girls that thought he was really nice. He even hinted about different girls but now he was telling us and others. SIGH...but I'm MOM and he's still the little baby I remember putting to bed at night with his favorite stuffed dog and the toddler that smashed all our remote controls, the little boy that at 3 was using power tools to take apart and rebuild things in our basement, the hyper little boy who never seemed to sit still and would ask if we wanted to use bar soap or liquid soap when he said something he wasn't supposed to, the little boy that would call my name so I could see that he was doing something wrong, the boy that I worked with in and out of school to make school work for him and the boy who introduced me to homeschooling when it became too much, the teenager that amazed me with his extensive vocabulary and a "sense of humor" that never failed to cheer me up, the teenager that called me "idiot" so many times I thought it was the replacement for Mom. This is a boy I have laughed with, cried with, struggled with, screamed at, cheered for, prayed for and celebrated each and every accomplishment, acknowledged the struggle and focused on the strengths.

In the midst of our struggles with school and trying to work two NACD programs, I came across a bracelet maker that helped me make a charm type bracelet for each of my children. I love these bracelets and tend to wear the one of the child I am concentrating/praying for at that time. Ben's bracelet has a heart shaped lock charm with a heart shaped key (because as my first child...Ben held the key to my heart), the next charm says "Create" (Ben is one of the most creative kids I have ever met, he's a thinker and can figure out how to work through most situations along with how to build or invent whatever he needs), the next charm is a book (Ben's dyslexia has caused him to struggle with both reading and writing and it is a part of his unique personality), the next charm is a crown (because he was and is my little prince), the next charm says "Perseverance" (this word exemplifies Ben's being), the next charm is a tractor (because of Ben's fascination with anything that has a motor) and the last charm says "Work" (Ben has always had a very strong work ethic, which leads me to a cute Ben story.

When Ben was in Kindergarten and through about 3rd grade he would tell his teachers at the end of the school year that he appreciated what they had taught him but he wouldn't be coming back because he was going to start working at J&H. This happened for 3 years in a row. In 4th grade Ben was home schooled through NACD and then returned to school in 5th grade and we continue to use his job at J&H as a motivating factor to get him through school. How many kids do you know that you tell them if they don't get their school work done they can't go to work and it actually matters???

All these memories came flooding back to me as Ben smiled and told me his girlfriend's name was Courtney. I had to ask him twice "What is her name?" I began a tirade of dating questions, enough of them to make Danielle tell me to "Chill, you're going a little crazy Mom." And yeah....I did feel a little crazy and a lot of other things...bewildered, cautious, excited, scared...I began to wonder would this girl get Ben to go to a homecoming dance??? Is she cute...NO...is she nice??? Oh...my head hurts but I take a deep breath, I look at the wonderful young man sitting in front of me and I put on my best smile and tell him if he ever wants to talk...I'll listen. He laughs at me and says "Sure Mom, I'll be sure to jump right on that"....and a part of me...desperately hopes that he will!

Vacation, Escape or a Little Bit of Both???

I have always loved living in Wisconsin, love the change of the seasons, sweater weather (hides all my lovely imperfections), the beauty of snow, rain, sunshine (sometimes all in one week).

But as I have gotten older and with the addition of Sam my love of long Wisconsin winters has diminished. Sam's worst season is winter, what used to mean snow, snowball fights, Christmas, ice skating, sitting by the fire has turned into croup, respiratory infections, pneumonia, flu, roto-virus and cabin fever. I now live for Easter break, and dream of a perfect vacation on a warm sunny beach where all the viruses are baked out by the sun. It all sounded so easy...but then came the quest for the perfect vacation...the vacation that would work for the entire family.

Our first attempt was a road trip to the East Coast. Please keep in mind we are a family of five. Two with ADHD and Dyslexia, two that love to travel...really anywhere...and one with some pretty significant special needs. Soooo, the road trip was not a favorite of the two with ADHD and Dyslexia....locked in a van for hours at a time...what exactly was I thinking??? They wanted to get from Point A to Point B with absolutely no stopping and a bus load of complaining in between! YIKES!

Our next attempt was an all-inclusive in Mexico. This was a once in a lifetime fabulous vacation that cost a fabulous amount of money. Pros...and there were a lot of them...loved the large resort, unlimited food and snacks for the kids, lots of pools, warm sunshine, beautiful beaches, para-sailing, jet skiing, gorgeous weather and scenery, miniature golf, golf cart transportation through out the resort, many places to eat, entertainment galore, we could walk to the pool or beach, waited on hand and foot...so many wonderful memories!!!

And now the cons....getting Jeff and Ben through multiple security check points considering they have the attention and patience of a flea (not a fun experience for them or security), impossible to keep Sam on his SCD diet, terrified that he would become ill and we would end up at a medical facility or hospital in Mexico, concerns about food and water and him getting sick from it, everyone having to take turns watching and monitoring Sam because he was happy to jump into a pool without knowing how deep it was or run along the beach and not remember to turn around and head back, Sam's not understanding that we were just staying in one room and the resort was not one big house where you could go into any room. Okay, funny story!! We were walking back to our room and another family was in front of us with quite a few children. They stopped, opened their door and headed into their room and Sam, of course curious, followed them in. Jeff and I called out to the people that they might want to send the last child back to us. The look on their faces when they saw Sam was priceless, they couldn't seem to return him to us fast enough. Jeff and I couldn't help but chuckle at their reaction. The good Lord watched over us on that trip and got us there and back safe and sound. Sam got sick from eating foods he wasn't supposed to eat but that was once we returned to the states. Knowing that I wanted to take my family on vacation yearly I knew this option was not going to be likely because of the cost and the stress factor of worries with Sam.

Our next option was to rent a home from the website http://www.homeaway.com/. Having a house to ourselves with a pool and our own kitchen to prepare foods was an answer to my prayers. We made the mistake the first year of renting a beach cottage near the ocean and quickly learned the following year to look for a house in land. Why???? Because you can get a bigger house with more cool options for the same price as the little beach cottage and honestly driving to the beach was easier on Sam than walking there. The second year we rented a home with 4 bedrooms, a huge, heated pool and hot tub, 5 bikes, a pedal boat and a boat with a small motor, 7 TV's, games, books and everything to make a vacation comfortable. The really great thing was this vacation cost us less than half of the Mexico trip, we stayed for 10 days instead of a week and it was cheaper than our small beach cottage by several hundred dollars.

Sam knows the boundary's of a home and no one had to follow him around, and he loved the fact that he could get some quiet time in his own bedroom watching TV. We could keep Sam on his SCD diet and enjoy dinner out or at home. The kids swam until all hours of the night. Jeff and I could take turns having one on one time with each child and we went to the beach, played miniature golf, went go-carting and enjoyed each others company. Following is photos and video of what we feel is the perfect vacation for our family!!!!

A perfect day spent lounging leisurely at the pool!!

Like father, like son...tooo precious!!!

Wave jumping in the ocean, so much fun!!!

Boys and their toys. Playing in the sand, no matter your age, this is the best!!!

Just loving the pool!!!

One, two, three....jump!!!!!

Go,

Go,

Go!!!

We scored a perfect vacation!!

Sam masters the belly flop!!!

Praying for Patience Again!!!

I have often said that my children are desperately trying to teach me to slow down and to be patient and yet I still find myself in situations where I am fervently praying for additional patience. Tonight as I work with Ben on his preparation for final exams...I'm praying. We are currently working on Biology with Communications and World Studies looming in the background.

I think about how other parents are already in bed not even aware that final exams are coming up because their children don't require their help. I think about how easy school was for me the first time around and how much I am not enjoying it a second time. I wonder if Ben's teachers have any idea just how hard Ben works to get the grades he gets. Sigh...it doesn't seem fair, it doesn't seem right and yet I know this is the way it has to be. I wouldn't change anything about Ben...his determination is what gets us through when my own determination has long ago decided it's past my bedtime and I'm feeling done, our joking around about Dyslexic moments and laughing at what Dragon Naturally Speaking mis-writes from his dictation is what keeps us sane. Knowing when to push Ben to work beyond what he feels he is capable of and knowing when we are at a point of sheer frustration is a difficult tight rope to walk. Letting him vent to relieve the frustration but trying to keep him positive enough to go on and not taking any of those vents personally (although some are directed right at me) is a challenge I wouldn't wish on anyone. But the moments I live for is the soft "Thank you, Mom" almost whispered as I head back up stairs after a long night, watching Ben hop and skip across the room when he is at the verge of completing an assignment he thought was impossible for him, seeing the pride on Ben's face when he comes home to announce the grade on his exam, even if it is just a half a grade higher than he expected.

It is midnight and Ben and I have just finished the beginning preparation for his exams. I wish I could say that tomorrow night and the night after that will not be more of the same...but it will. Tonight was a good night, the yelling was at a minimum, we both kept our spirits up, Ben's focus although fluctuating at times allowed him to complete 4 chapters of dictation. Whew...this is not the school journey I imagined but I know Ben will be a wonderful, hard working, creative, industrious, problem solving, productive adult because the challenges of his education, the requirement to so often burn the midnight oil, the perseverance and "get it done" attitude he has had to have will only help to form the amazing adult he will become.

Good night Ben, I am more proud of you than words could ever convey.

My First Internet Radio Interview

I was asked by Janet Hinz to be a guest on her talk radio show "Critical Thinking in the Real World" on the Toginet network.

I had never done a radio internet show but I decided to give it a try. It was really interesting and I got to talk about my favorite things, my children, Possibility Playground and my blog. If you have a moment, listen to the Podcast and let me know what you think.

Go to http://www.toginet.com/shows/criticalthinkingintherealworld and click on the podcast on the right hand side titled “Parenting Children with Special Need and Securing Their Financial Futures”. The first guest is a Metlife Representative and then me. Hope you enjoy!!!

I Dream of High School Graduation!

Okay, maybe I should clarify...I've already made it through high school and even college but the graduation I am referring to is my oldest son's high school graduation.

I think I under estimated Ben's insightfulness when he was younger. Starting at the age of 5, Ben would end each school year, thanking his teachers and telling them he appreciated what they had taught him but he would not be coming back because he was going to start working. It's funny now that he is in high school, I am the one that would like to be making that same statement...thanking his teachers but letting them know that we're feeling done with school and Ben is just going to go to work. For me, getting Ben through school is work and here's why...

A. He would rather be working earning money than going to school.
B. The new school year means it is time to update Ben's letter of introduction to his new teachers and advise them of his 504 plan and what it means to be Dyslexic, ADHD and LD.
C. A new year means new teachers, new teaching styles, different methods of testing...trying to make it all work for Ben.
D. Each year I begin to monitor Ben's grades to see if he is staying engaged, working hard or requiring some motivation or incentive and then putting that plan into place.
E. Each year I try to keep the line of communication open between Ben and I so we can work together to figure out where the challenges are and how he needs to adjust and compensate.

Our school district and most of Ben's teachers have been wonderful to work with...but it is work. I have over the years figured out some things that really work well for Ben's situation. In the next few posts, I will describe those in detail.

The first one is taking the time to write a letter of introduction to Ben's teachers. Helping them to understand how Dyslexia affects Ben along with opening a line of communication has been crucial. A mistake a lot of parents make is assuming their teacher has been trained to work with their child's disability. Each of our children is different and a label doesn't tell a teacher what Ben's particular issues are. Here is Ben's intro. letter:

Subject: (Child's Full Name)

Dear Staff,

I wanted to take a moment to introduce Ben and our family. Ben will be a freshman this year. Ben attended St. John’s Lutheran Academy from 3 year preschool-6th grade. He was homeschooled most of his 4th grade year through a program from NACD (http://www.nacd.org/). He attended (Child's school) Middle School for the last two years.

A little history about Ben. Ben was born on (birthdate). Ben began speaking at a very early age and was talking about articulated dump trucks by the age of 2. He was extremely industrious, thoroughly enjoyed puzzles, legos and anything to do with construction equipment. Ben often built lego creations just by looking at the picture and could build them in 3 dimensions perfectly although he only saw a one dimensional picture. When I asked Ben how he was able to do that, he would look at me and say, “Don’t you see it, the back and the sides?”

Ben was fascinated by tools and began using power tools at the age of 3. By 5 he was driving a riding lawn mower, at age 7 he learned how to weld, at age 8 he was operating large construction equipment including an overhead crane. Ben began collecting his tools at the age of 4 when he decided he would rather have Home Depot gift cards instead of any toys or gift cards for toys. Ben now has one of the most comprehensive set of tools I have ever seen. Ben has been going to my husband’s shop, since he was 5 years old. He can’t manage to wake up for school but gets up without an alarm clock every Saturday at 5:30 a.m. to eat breakfast with the guys at the truck stop and then to go to work with his Dad. Ben takes apart old heating/air conditioning units and turns in the scrap for money. With this money Ben has been able to purchase his own dirt bike, a brand new Yamaha snowmobile for Christmas and has managed to put a good amount into his college fund. He continually purchases tools and his favorite gift card of choice to date is Snap On. Ben’s favorite Christmas gift was an equipment dolly.

We knew early on Ben was unique. We could walk into a room and when we left the amount of detail he could tell you about was astounding. He would ask his Grandma where things were if he saw something moved or different in her house, it sort of became a game. He could describe people and equipment down to the color of their shoe laces or the color of the paint scrape that was on the tire.

We thought school was going to be a breeze since Ben seemed extremely intelligent and willing to learn. Ben started at St. John’s in 3 year old preschool, he seemed to only observe and rarely participated. In 4 year preschool he began to tell his teacher when she did things differently than the year before and participated more readily but mainly in those areas that interested him. In Kindergarten they began to work with letters and reading, this is where we quickly picked up on a problem. Ben had difficulty blending words, writing anything and would get extremely frustrated when asked to do so. His teacher felt he would grow out of it, I felt differently.

At the age of 7, Ben was tested by a psychologist from Achievement Associates. It was then we learned that Ben was diagnosed Dyslexic, ADHD and Learning Disabled in Reading, Writing and Spelling. We chose to keep Ben in his private school because the school was willing to work with us, we wanted a Christian education for Ben, he would have a great deal of one on one attention due to a very small class size, the curriculum was extremely challenging (Core Knowledge Curriculum, www.coreknowledge.org), and the school would focus on his strengths instead of his weaknesses. I did a lot of research on Dyslexia, Ben had a tutor, and we attended many sessions and workshops on ways to help Ben with his learning issues including a 3D Learner Program in Florida. The first 4 years were very rough, a lot of peaks and valleys and unfortunately in 4th grade Ben’s disabilities overtook his abilities.

I pulled Ben from 4th grade and chose to homeschool him through the National Association of Childhood Development, http://www.nacd.org/. Along with Ben, we have a daughter Danielle who is 12 and our youngest son Sam who is 8 and has Down Syndrome, a brain injury, apraxia, dysphagia and bilateral conductive hearing loss. Sam has been on program with NACD since he was 18 months old. I will not say this was an easy year but it was definitely needed to help Ben. We worked on so many core areas of Ben’s neurodevelopmental profile. Ben’s visual processing was at an 8 to an emerging 9 but his auditory processing was at a 5, which is the equivalent of having a 5 year old in your 4th grade class. His coordination and fine motor skills required a great deal of work. He and I learned how to work together, how it was easier for him to be active while learning, we did spelling while riding bikes, history while digging a hole and bounced a ball while working on processing. We researched people with Dyslexia like Walt Disney and Charles Schwab and learned how despite their learning issues they succeeded in life. To bring up Ben’s reading level we did high intensity reading which for Ben meant we read Bronco Builder magazine, Caterpillar literature, John Deere literature and the history of the Yamaha Corporation. When Ben returned to school in the 4th quarter for testing to see if he could return the following year his teachers were amazed. They were sure we had medicated Ben, but we didn’t, although at times I was tempted. Ben returned to school with an increase of 2 years in his reading ability, his auditory processing at a 7, and his self esteem back in tack. Ben has done well over these last few years. We still have an occasional D or F in the course Ben decides he is not interested in and he still struggles significantly with writing and spelling. This has been an interesting journey for Ben and us as his parents. Ben is a very bright boy, he is going to do well in this world, but he needs help in learning how to work with his disabilities in reading, writing and spelling. He has always chosen to work on his issues with me at home because being in a small school there was no one else there like Ben and he didn’t want to stand out as being different. However, I have learned in working with Ben that he will choose what he wants or doesn’t want to do. We have purchased both Kurzweil and Dragon Naturally Speaking for Ben to use but I know he will have to decide if it is helpful to him or not therefore choosing if he will use it or not. Ben’s 7th grade school year went well but one of his teachers felt he would benefit from the LD program. I disagreed because I think Ben needs more challenge in order to stay focused, if the work is easier he tends to drop both his effort and attitude and his behavior can escalate. He has done well in most of his 8th grade classes with the occasional need to have us help him get refocused and engaged but his teachers have been great in letting me know when he seems to be dropping off.

Ben has taught me a great deal in how to work with him and his little brother. We are both nervous and excited about Ben coming to the High School. His self esteem is good right now and by far that is the hardest area to work on when it gets out of whack. I would ask that his teachers keep me in the loop on how he is doing, what he is excelling at and what he seems to be struggling with. We have also asked (child's counselor) to be Ben’s go to point when he is not understanding, struggling or requiring additional help. We are working on having him advocate for himself. He is a great kid but if he gets bored his behavior can take a turn. Ben will need to sit near the front of the class, not in the front row but limiting the distractions will be helpful. Because I have worked one on one with Ben I am more than happy to share my experiences with his new teachers. Please understand that Ben’s issues do not have to do with intelligence or his ability to understand what you are teaching, but instead deal with his ability to show what he has learned in a written form. I have included further information on Dyslexia to help you understand how it affects Ben.

Thank you for taking time to read this. Thank you for working with us to insure that Ben has a bright future and reaches his full potential. I have expressed many times that raising 3 children, 2 with learning disabilities was not the program I signed up for. But Ben, Danielle and Sam have taught me so much and I am enjoying each of their journeys which as you can imagine are each very different. Have a great school year and please stay in touch!

Sincerely,

Jeff & Sue Mayer