Praying, Thinking and Reflecting!!

I've spent these last couple of weeks in deep thought. As I reflect on 2011...it really wasn't one of my favorite years.

Sam started it in a body brace as we dealt with the diagnosis of Perthes...and yet I found hope.

When Sam became more stable my health took a downward spiral...and yet I found strength.

I went on an amazing road trip...and I knew I was blessed.

Ben almost lost his life in a truck accident...and I am thankful that he is still with me.

Sam's Perthes continued to progress...and yet I gained knowledge and found more hope.

My father-in-law was diagnosed with colon cancer...and I continue to pray.

I am often asked how I stay positive and I can assure you that it is through faith alone. I'm not that strong, my emotions are worn on my sleeve for good or bad. I cry at sad movies, heck I can cry at a simple act of kindness. Sam's journey has stripped away my buffers, my shell, my mirage of the strong, independent, capable person I like people to think I am. I hurt deeper, I feel things stronger, and it is only by the grace of God that I pull myself up by the boot straps, smile and carry on. But these challenges...these insights into who I am...are the same things that are changing me, building me, bettering me...shaping me into the person God wants me to become. When I was younger I thought I had things pretty well figured out. I worked hard, I liked obtaining the goals I set, I had plans, I had dreams...and I was going to obtain them.

Hmmm, maybe that was part of the problem...a lot of that thinking was all about me. If I was going to have a successful career, marriage, friendships, life in general...I needed to think about others. I always knew I was a bit stubborn, hard-headed and didn't always take direction very well but I always thought that was a strength. I mean...tell me I can't do something and I'll prove to you I can. I have always been more of an introvert but I want people to view me as an extrovert. I like to be in control and I always thought I did a good job doing it.

But now I'm older, wiser and my journey on this earth has taught me so very much. God knew about my stubbornness and he sent me three children, but two (not just one, that wouldn't have been enough) that required extra parenting and attention. I quickly learned when I became a Mom that I had lost my concept of control. When I found out Ben was dyslexic and had other learning issues I wanted to make that go away. I didn't want him to struggle...and yet it has been through the struggle and challenges that Ben has become the young man I see today. He's creative and he doesn't let much hold him back. He is persistent, smart, impulsive, strong and has one of the most impressive vocabularies and along with his wit, humor and quick come backs he is a joy to be around.

Danielle brought into my world a gentleness and a compassion that forever changed me. She is smart and has a wonderful sense of humor. She has my edge, my determination, my drive but she also has a heap of care and compassion. She shows some of my control issues, my sarcastic sense of humor and my goofiness, but she is stronger and wiser than I was. She can hold her own with both of her brothers and she doesn't feel neglected or left out considering the extra attention they both receive. She has an amazing personality and I enjoy her company.

And how do I even begin with Sam. Sam has taught me so much. If I thought I had any semblance of control Sam quickly let me know that I was mistaken. I will never forget the moment we were transferred to the ICU because Sam didn't seem to think breathing was that big of a deal. I will never forget how helpless I felt as I watched the monitor show me a heart rate that was too high and respiration's that were too low and an oxygen level that couldn't be maintained. I remember dropping to my knees and praying with everything I had for God to help Sam...to save Sam. I realized at that moment that I had no control, and all I could do was pray. I wanted to barter, make promises to God...show in some way, some how that I could still control the situation but Sam's stats quickly erased those thoughts from my mind and I simply prayed.

I wanted Sam to achieve his milestones in the same time frame of a typical child or even better. I wanted Sam to be that child with Down syndrome that defied the odds, that excelled above the rest, that others could look at and feel encouraged. But Sam and God had different plans. Sam didn't crawl until he was almost 2 years old and he didn't walk until he was over 3 years old. Every year I waited and waited for Sam's speech to take off. I was sure that by the time he was 4-5 years old he would be communicating easily and we would be having enjoyable conversations. At 4 years old Sam was still considered non-verbal. He had sounds and some words but he certainly wasn't talking up a storm like the other children with Down syndrome at our NACD evaluations. I had to really listen for Sam's words or to understand what he was saying and that's when I had my "aha" moment. I was a great talker but a not so great listener. Sam required me to become a better listener. He relied on me to talk with him and not at him, to talk at his level and to repeat and add to our conversations. In order for Sam to expand his speech we had to have balanced interactions, something we still strive to work on.

I learned strength and resilience through Sam. Sam's numerous medical issues have required me to be strong and resilient. I had to be able to think on my feet, to not become overwhelmed but instead find my inner strength. I would look at Sam and see his smile through the oxygen mask or watch his eyes light up when his family entered a room, or see him work on his breathing, strength training or therapies just to see our excited expression when he accomplished his goal and I would be stronger. How can I even think of giving up when I'm just the observer and I see this child, my child, fighting, working, challenging himself beyond my expectations.

The hardest lesson to learn has been to slow down and give Sam the time he needs and requires. Sam works with me everyday to instill an appreciation for time. Time given, time spent together, time waiting, focused time, time commitment, quiet time...and the list goes on. I could rush through life, stay on schedule and accomplish so much on my own...because that's what I always did. But then I'm not giving Sam...time. It would be easier to dress Sam instead of wait for him to get dressed on his own. It would be easier to make Sam breakfast then to have him learn how to make it himself. It would be quicker for me to complete the chores then to work through them with Sam. It would be easier for me to fill in the words Sam can't seem to pull out quickly than to wait for him to work them out on his own. It would be easier, it would be quicker...it wouldn't be fair to Sam. It wouldn't be what Sam is so desperately trying to teach me.

I never wanted to be a teacher, it wasn't my passion or calling but I did want to be a good parent. Ben was the first to require me to work more with him. Without training or education and with only the strong desire to help my child I had to figure out how Ben learned. I had to learn how to work with him, help him, challenge him and encourage him. Ben was just getting me ready for my journey into educating Sam. Through my journey with Ben and Sam I have gained a true appreciation for great teachers. I struggle with working with Ben and homeschooling Sam. I couldn't even imagine a class of 20-30 students. I have spent some time in the school system as a parent liaison for special needs families. I have met many great teachers but I still struggle with becoming completely comfortable with how our schools are set up and operate. I feel many schools are doing the best they possibly can to live up to the mandates of our government, but therein lies my problem. I don't feel the government should decide how our children are educated or how and what teachers are to teach. I enjoy working with Sam because I follow his lead, we dive deeper into areas that interest him and skim over those that don't. I don't need to test because my observations guide me on areas he needs more work on. I'm not trained to be a teacher...but could you imagine the wonderful things that could happen if a great teacher was given that freedom. The things our children would learn...the experiences they would have...the learning that could take place. I feel our schools do really well with the Danielle's of the world, those children who learn easily and test well. But we are missing the boat on the gifts our children like Ben and Sam have. They require those really great teachers who are going to figure out how they learn, embrace the differences and are ready to see the amazing outcomes.

Sam has required me to rethink so many things I thought I understood...and to change. I never struggled with school, it was easy for me as it is for Danielle. When I started to homeschool I tried to take my school experience and make it work for Sam. It didn't. He didn't like my well thought out lessons plans. Sam fought me tooth and nail. If Sam was going to work with me he wanted it to be fun. If Sam was going to work with me he wanted me to be available when he was ready. I have learned to incorporate puppets, throwing things, physical breaks, music, toy play, magnets and I never ever refer to it as work. Our schedule is flexible and I have come to realize that I am on Sam's time...not mine. I keep track of those things that work and try to re-create them in other areas of study. I have learned that what Sam doesn't like now doesn't mean he won't be ready for it at a later date...thus the ever growing Rubbermaid tubs of homeschool stuff that exist throughout my house. Sam requires me to be "in the moment" not typing on my computer or talking on the phone, not watching TV or doing a household chore without him...but instead to be there with him...listening, talking, being. I think Sam picks up more from our playing together, building puzzles, travelling, card games, chores, going to the zoo or other community field trips...then any of my scheduled lessons.

Sam has taught me the value of all people. I spent a lot of my younger years critiquing other peoples strengths and weaknesses. As I have gotten older I find myself critiquing my own strengths and weaknesses and now appreciating how we are all different and learning to embrace those differences. What Sam doesn't say is expressed so eloquently in his expressions and actions. I love and appreciate how Sam perceives his world. His reactions are pure, he has no buffers or shell, he isn't afraid to express himself, he chooses not to judge or be judged. He radiates love, joy and an appreciation of e v e r y t h i n g.

Like Sam...I am not worrying about the future...I am living in the day. I will strive to enjoy my time here on earth. I will strive to be present, available, loving and lovable. I am looking forward to each and every day! Good night everyone!

Let's Talk About The Myths Regarding Dyslexia!

I was recently asked to include a few items on my blog regarding Dyslexia. The first article submitted to me talked about "15 Common Myths About Dyslexia". I want to address each point of this article from the standpoint of a spouse of someone with Dyslexia and a parent of two children with Dyslexia. My responses are in italics.

Most people have heard of dyslexia and might even know someone who has it, but how many really know just what kind of learning difficulties it causes? Like most learning disabilities, there are a lot of myths and bits of misinformation surrounding dyslexia, and it can sometimes be difficult to separate fact from fiction, especially for those who don’t have or don’t know much about the condition.

Whether you’re pursuing a college degree in special education, have dyslexia yourself, or know someone who does, we’ve collected some of the most common misconceptions here so you can gain a better understanding of just what it all actually means — without all the potentially damaging myths getting in the way.

I want to first address the label of Dyslexia. I have the same problem with the label of Dyslexia as I have with a lot of labels. The label Dyslexia deals with a broad spectrum of learning differences. If you are told your child is Dyslexic it doesn't necessarily tell you what your child's specific issues are and what to do about them. The label itself is an umbrella that covers many different learning issues that are commonly associated together. But just like Down syndrome, no two Dyslexic children are alike. In my own family, my two children that would be given the label Dyslexia are very different. It is much more valuable to figure out what areas of a child's neurodevelopmental profile are not functioning properly. Are they cross dominant, do they have a visual or auditory processing issue, do they have a visual convergence issue, is there a fine motor issue involved? My son Ben is cross dominant and has an integration deficit in regard to his auditory processing while Sam is cross dominant but has an auditory decoding deficit in regard to his auditory processing, fine motor issues and he has visual and convergence issues.

1. People with dyslexia are less intelligent

   Despite the long-standing belief that if you can’t read well, you aren’t intelligent, there is no link between dyslexia and IQ. People of all intelligence levels can have the learning disability. Contrary to popular belief, there are quite a few highly intelligent, accomplished people out there who have difficulty reading due to dyslexia. Among them? William Butler Yeats, Albert Einstein, John Irving, and Charles Schwab.

   I find my husband and my sons to be highly intelligent. They may struggle with reading and writing but this in no way hinders their intelligence. In fact from our personal experience I would have to say that they are gifted in the area of mechanical aptitude and problem solving, just don't ask them to write things out for you...let them show you. The second item I was asked to include in my blog is a list of famous Dyslexic people. You can find this list at Patricia Duggan's site Psychology Degree or click on the word list to go directly to her site.

2. Reversing letters is a definitive sign of dyslexia

   Can reversing letters hint that a child may have dyslexia? Yes. But it is also a common phenomenon among children just learning how to write. They are still honing their fine motor skills, and it often takes some time for both dyslexic and non-dyslexic kids to properly form their letters. It actually may be more telling if a student has trouble naming the letters (a much stronger indicator of dyslexia), as only 10% of the diagnosed exhibit reversal symptoms.

   All three of my children had letter and number reversals. Yep, that's right I said all three. However Danielle does not have Dyslexia but letter reversal was something we saw as she was learning to write. Neither Ben nor Sam had any difficulty naming letters. Sam continues to have an issue with letter sound identification but that has more to do with his hearing and processing issues.

3. Only a specialist can help an individual with dyslexia

   Getting professional help can be great for children with dyslexia, but it isn’t the only option. Parents have a wide variety of ways to help out at home as well, particularly involving assistance with reading, writing, homework, and feeling comfortable and valued. These efforts can be just as important as the leg up sought through schools and specialists, and parents don’t need a degree in special education — just patience and love.

   I absolutely agree with this statement. I have had to learn how to work with Ben and Sam and have assisted them through their educational journey. For our family I have found the most helpful information and knowledge was given to us by The National Association For Child Development (NACD), www.nacd.org. They helped to understand the underlying issues for both of our boys and gave me strategies and exercises to overcome the challenges. I encourage every parent to learn as much as they can, attend conferences, do research, have your child evaluated, join listserves, read articles and books and never ever give up.

4. Girls can’t have dyslexia

   While dyslexia is more common in boys than girls (a phenomenon still baffling researchers), it is not exclusively male. In a 2004 study, 6% of girls ages three to 17 had a reading-related learning disability. It is notable, however, that some believe there is no discrepancy at all. Rather, they think the gap between diagnoses stems from differing societal gender expectations rather than actual lack of reading ability. Either way, it’s important to watch both male and female children for signs that he or she is struggling with reading.

   In our family, the girls don't have dyslexia...but we might have some other issues.

5. Dyslexia can be outgrown

   As children grow up, they may struggle less and less with dyslexia, as they learn new methods to improve their reading and spelling skills. The reality is, however, the learning disability will follow any child into adulthood and cannot simply be outgrown. It is a lifelong battle for many, and even those who’ve mastered these skills will still read slowly and not automatically.

   Hmmmm...I agree and disagree. If you are able to work on the specific areas of the neurodevelopmental profile that are affected I think you can resolve all or most of the problems. However if you do not figure out what those areas are or a child decides they do not want to do the work involved in eliciting a change I agree that the child will learn methods and compensatory skills that will help elevate their issues but they will continue to have some challenges and struggles into adulthood.

   Dyslexia cannot be diagnosed in young children

6. While some children aren’t found to have dyslexia until later, professionals and specialists in the field can accurately diagnose it as early as age five. Many schools will not test children for dyslexia before 3rd grade, wasting precious time and causing undue difficulties. Parents who believe their child may have a learning disability should pursue testing as early as possible, as an early diagnosis can help kids get the help they need before their difficulties become more pronounced.

   Again I will reiterate that it is more important to find the underlying issues that present themselves as a learning disability or label of Dyslexia. To get your child the best help possible you have to go beyond the label. Ben and Sam have different issues and we work with each of them differently although their diagnosis would be the same. I didn't want a one size fits all approach to addressing the needs of either of my children. Pinpointing your child's specific needs is crucial to helping them succeed.

7. There is a cure for dyslexia

   Dyslexia is not a disease, it is an educational issue. As such, there is no cure. Individuals who have the condition cannot outgrow or get rid of their reading difficulties. They can, however, learn to overcome them, and there are number of successful treatments and programs to boost competence in reading, writing, and spelling abilities — though they may continue to struggle throughout their lives.

   I would answer this the same way I answered the myth about a child outgrowing Dyslexia.

8. Children with dyslexia simply lack in phonics instruction

   There is no indication that additional phonics training will help a student with dyslexia. In fact, many children with the condition already have a pretty good grasp on phonics — they just can’t apply it. Knowing how the word should be sounded out and being able to do it are two different things, and the inability to reconcile them is a key issue that many dyslexics face. While phonics tutoring can be a big help to children (and adults) with dyslexia, do not believe claims that it will cure or eliminate any difficulties.

   For both of our boys site word reading was the way to go. I will never forget sounding out the word "cat" for Ben and then asking him what word did I just sound out. He had no idea because he couldn't put the sounds together. Phonics rules were taught to Ben but he wasn't able to use them until he became more skilled in his reading.

9. The solution for dyslexic children is to read out loud more

   Some parents and educators would like to believe that practice makes perfect, but for children with dyslexia, this method simply won’t work. Reading out loud will not teach them how to pronounce words and may push them towards other methods, like context clues, to simply guess at what the page says. Only structured tutoring and practicing phonemic awareness skills can help dyslexics improve their reading.

   Again understanding and addressing the underlying issues makes reading easier. Ben did not like to read aloud, Sam likes to read aloud, Ben loved books on tape, Sam doesn't listen to books on tape. Ben does well with Kurzweil (an adaptive technology program that reads to him), Sam can not understand the voice on Kurzweil.

10. Dyslexia is rare

    Unfortunately, dyslexia is all too common. The NIH estimates that it impacts over 20% of the U.S. population. This means one in five people will have varying degrees of difficulty writing, reading, and spelling. Often, individuals have very mild dyslexia that goes overlooked or undiagnosed and receive little assistance with their reading difficulties.

    I think processing issues are often overlooked and rarely diagnosed correctly. We need to stop looking at the symptoms, ie reading/writing difficulty and instead find the underlying cause and address those issues.

11. It is too late to help adults with dyslexia

    While it is best for those with dyslexia to get help early on, there is never a time too late for individuals to address it. There is a wide range of training and tutoring programs that can help adults with dyslexia improve their reading skills and phonological abilities. In fact, many of the same methods used to teach children can help adults with the condition as well.

    I do believe that the same methods and strategies used to help children can help adults. Jeff will be using Ben's program Dragon Naturally Speaking to help him dictate emails, letters and quotes at the office.

12. Dyslexia only affects a person’s ability to read

    One of the more noticeable effects of having dyslexia is difficulty reading, but this isn’t the only ability that may be affected. Children with the condition may also struggle with sequential memory and following directions, which can make tasks like tying shoes, doing mathematics, or typing just as challenging as reading. All of which could easily cause a wide range of other challenges in an educational setting.

    I feel like I'm repeating myself a lot, but again it is more important to figure out the underlying causes. In our family we see issues with auditory and visual processing, fine motor skills, reading, writing, spelling, math and organizational skills.

13. If a child can read, he or she can’t have dyslexia

    Being able to read isn’t a sign that a child doesn’t have dyslexia. Many kids get quite good at using reading strategies like context clues, word shapes, and guessing to give the appearance of literacy. The reality is that many have auditory processing problems preventing them from hearing a word’s individual sounds, so they cannot read by sounding out the letters. When reading progresses to higher grade levels, these alternative strategies no longer work. Many kids are diagnosed with dyslexia later on, despite appearing to read fine early in life.

    My guys showed issues early on. I was sure Ben had issues when he was four and Sam came to us with many different issues and he added more along the way.

14. All children with dyslexia will get help from LD programs

    Not all children with dyslexia meet the requirements for learning disability programs offered through school. In fact, many only accept those with the most severe reading difficulties. While over 80% of children with a learning disability have dyslexia, only 1 in 10 will qualify for special education. This means that parents, tutors, and help outside the school are a must for many students who struggle with reading, spelling, and writing.

    In our situation, Ben never wanted to be in LD or special ed classes. He knew he could understand what they were teaching he just needed help to show his work on paper and he needed assistive technology help with his reading and writing. I felt Ben needed the challenge of the regular curriculum to keep him focused on school and to keep him from getting bored which would have had a negative impact on his behavior.

15. Children with dyslexia will never learn to read well

    Will dyslexia always affect an individual’s ability to read? Yes, but it doesn’t mean they can’t learn to become good readers and writers with a little help from tutoring and school interventions. Many people with dyslexia have gone on to become successful authors, scientists, and businesspeople, so there is no reason to believe it curses one to a life without reading — it just might prove more of a challenge for them than others.

    The last point is the same one I have made over and over in regards to this article. If the underlying issues are figured out and worked on great improvement can be seen.

    As someone who has been on this journey for awhile I have learned that a label of Dyslexia gets me services in the school district but it didn't tell me enough about the challenges my children were facing. To help them I had to understand them. I suggest families look at neurodevelopmental programs and see if that is a possibility for their family situation. If not research, read and attend conferences and workshops but first and foremost really get to know your children. Knowing what their strengths and challenges are is very important. Facing these types of challenges can affect a child's self esteem and it is important to focus and help them pursue their strengths and those things that truly interest them. Ben's work ethic, interest in vehicles, love of making money and his natural curiosity on understanding how things work and how to make them better is his driving force. Sam's love of food, travel, swimming and being with his family is his driving force. A label of Dyslexia is not the end of the world. In my experience the label came with it's challenges but it also presented some amazing strengths. Ben's amazing memory, problem solving, mechanical aptitude, persistence and determination is going to take him far in this world. Sam's positive attitude, persistence and curiosity will continue to help him figure out what he really wants to do as he gets older.

    Both of my boys are learning how to overcome challenges, how to compensate, how to problem solve and how to become the best that they can be. With their level of persistence I don't think anything can hold them back!!

Challenges and Blessings, A Long Post To Catch Up!

Tonight I am tired, I am calm, I am humbled but most of all I am blessed. In the last two weeks we have had 6 doctor's appointments, including 4 trips to Children's Hospital. Add in 8 therapy appointments, another sick child, homeschooling, a good friend of Sam's having major surgery and the day to day things that we all face, dinners, laundry, house cleaning and oh yeah...sleep...seem to be kinda neglected. I didn't have time to return calls to friends, I didn't have time to update the blog, I didn't have time to work on Sam's next fun unit study on the human body or put his books on tape, I didn't have time to read my book for book club or work on the afghan I am making for my wonderful daughter and a lot of those things are what helps me to maintain my calm and balance. I just sorta floated through these 2 weeks, trying to stay on schedule, trying to maintain some semblance of balance...but some weeks you just trudge through. What I was amazed at...was that I didn't feel out of control, I didn't feel overwhelmed...I was tired but at peace. So often people will leave comments on my blog about me being a super mom but honestly I'm just a regular person put into some challenging circumstances and doing the best I can to make it through. I am often asked how I make it through...I have only one answer...through faith alone.

If I would have sat and thought about these two weeks and all that has transpired it would be so very easy to fall into depression, bouts of anxiety or wasted time worrying or asking why?? All the stressful stuff I put in God's hands and I look for the blessings...because they are always there....sometimes you just have to look harder than others.

We began with a follow up visit to Sam's orthopedic surgeon. Sam is walking less, putting himself in traction or laying down more and we seem to be sliding backwards instead of making forward progress. His x-ray didn't seem to show any new bone growth. Sam's surgery was in December and by this time his doctor would have hoped to see some progress made in regrowing Sam's missing ball for his hip socket. He couldn't tell by the x-ray why Sam was having more pain and discomfort so he asked us to do a CT scan. I was hoping that Sam could do this without sedation...hope is good but sometimes reality wins out. Sam laid down on the CT table after yelling at it a couple of times and hitting it, letting everyone know that he wasn't happy to be there. We then attempted to get him settled but in true Sam style every time I told him to keep his feet still...he had to move them...he just had to. I tried reverse psychology and told him to move them, hoping he would stay still but that backfired too. We left with a return trip scheduled for the next day for a sedated CT.

I drove away with a heavy sigh knowing that sedation isn't always easy on Sam but we would get through this too. We returned in the morning. I really liked our anesthesiologist. He asked me if there was anything I needed to tell him about Sam. I started my speech, "Well, you should be aware that Sam has upper airway issues, pristine lower airways, so no asthma, but scaly, narrow upper airways. He has a floppy airway, an extra esophageal fold, an anatomy anomaly of 3 bronchial tubes instead of 2. He tends to overreact to medications so less is more in Sam's case, he will go into a shallow breathing pattern when sedated, steroids make him manic so if intubation is needed he will come out of sedation manic and he may come out manic without them, if Sam begins to have respiratory issues vaponephrine is the drug of choice...but other than that he is an amazing little man and the love of my life." He looked at me and said "Wow, you are an amazing medical mom." I quickly replied "Well, he needs me to be." He continued to compliment me, something I don't really handle well because I don't feel amazing or remarkable, I feel as I often say like a regular person who has been put into difficult situations and is trying to do the best I can. I have my good days but don't even think for a moment that I don't have my bad ones too.

The anesthesiologist decided to ask the "NO" boy what fragrance of anesthesia he liked. I always lets them give it a shot in case Sam decides to answer with a yes, but each one was greeted with a strong "NO". He then looked at me and said "I'm guessing I'm going to get a NO on every thing." I told him his guess was correct and Sam knows that he is going to have to ingest or breathe in one of those and he simply doesn't want to have anything to do with that. He asked me about positioning Sam, I told him it would be best to let him sit up, have him sit behind him, bring the mask around, Sam will look to me for reassurance and I will tell him to take a deep breath and that everything is okay. If he is going to be laid down, than place a rolled blanket at the base of his neck in order to fully open his airway.

Sam again yelled at the CT table and let it know that he was not happy to see it but then he climbed on. I took off his shoes, the anesthesiologist sat behind Sam and as he brought the mask around Sam immediately looked to me with wide, panicked eyes. I smiled and told him he was alright, go ahead and take a deep breath and I am right here with you, I'm always here with you. Sam quickly drifted off to sleep and I left the room to let them finish with the CT scan. They wheeled Sam to the recovery area. Most kids with a short blast would have slept for about 5-10 minutes...45 minutes later Sam woke up as the nurse began to remove the leads on his chest. He popped up like a jack in the box and said "Mom, go home, eat." I told him to relax until we brought the table down and I offered him some water to drink. Now for the real test...I asked him "Sam, have I told you lately...", he answered immediately "I love you" and I told him "I love you too". "Let's go home and get something to eat."

We also visited the dentist and Sam's pulmonologist, she looked almost giddy as I told her Sam was being homeschooled. Sam's pulmonologist is extremely supportive of Sam being homeschooled because he gets sick less often and she isn't required to find the magic pill that will keep Sam from going into respiratory distress. Believe me, we have tried many and I don't think she will ever forget when I brought Sam in to see his pediatrician after he had taken a preventative steroid and inhaled medication. Sam was fully manic, running around the office, pulling things off the wall, kicking, babbling incoherently...a completely different child. It took two of us to bring him there since he wouldn't keep his seat belt on and kept trying to escape from the car. I calmly explained to the pediatrician that if they wanted Sam to continue taking these medications I had his suitcase in the car and he could move in with him until they got this worked out. He quickly called Sam's pulmonologist as I waited to come up with a better plan.

Sam's dentist was wonderful again...see another blessing!! He got more done with Sam than he hoped and Sam gave him a hug when he left.

We finished all the home test kits but need to take Sam to the hospital for the lab work next week. Sam is obviously in pain since he won't walk far, asks for his wheelchair and puts himself into traction but Sam doesn't complain, he rarely cries and he faces each day with a smile. His frustration level is lower but with that said he continues to plug away at his NACD program and his academics. This is a blessing!! I remember a time when Sam would have been more than happy to throw a complete fit because he felt rushed or our time frames were shorter. It used to take me a long time just getting him interested in doing something. The level of intensity to teach Sam was often beyond my ability...but now he just jumped in, complained at times...but that wouldn't be Sam if he didn't complain and we completed as much as we could in between all the appointments.

So what is Sam working on??? He is writing his letters with www.thetvteacher.com and he absolutely loves this program. Sam was recently found to be cross dominant. NACD does not like to use the word dyslexic because it groups many different learning disabilities under one umbrella. I have always felt that Sam exhibited many of the same issues that Ben has so I wasn't surprised. With that said, like Ben...Sam will struggle with reading and writing. Sam is also working on his writing with his Ipad using the Pocket Phonics app and the Letter Writer app. Sam is writing notes to his Dad, brother and sister and he is writing sentences about pictures of him. Sam at this point is tracing dotted letters. He is not at the point of writing a requested letter freehand. When he tries we often see him starting in the wrong area or making the letter in the wrong direction.

I determine many of Sam's fun unit studies using www.brainpopjr.com. These are short animated videos that teach the educational elements covered in a 1st-3rd grade curriculum. If Sam is interested in the topic, he is engaged in the video. Here is Sam watching the BrainPop video Exercise. I look for eye contact, acknowledgement of auditory cues and his overall attention span.

When I see Sam is interested in a topic we go to the library for books. We look up videos on Netflix or www.cosmeo.com. We do projects related to the topic and we have fun expanding on what the BrainPop video covered. We are finishing animal classifications and habitats and will be working on the Human Body next.

Math has always been a challenge with Sam. For the longest time he didn't like to count, didn't like to identify numbers and certainly didn't want to work with numbers. I worked with a lot of manipulatives, finding math in everyday situations (like # of plates needed to set the table) (how many grapes do you want to eat?) (Give Buddy 3 treats, he only ate 2, how many are left?) You get the idea. We then used large manipulatives and magnets for beginning addition. Sam has a one to one correspondence issue. His finger moves faster than his brain. So using something large to move or the resistance of the magnet allowed his brain to catch up. We now use the Kid Calc app on the Ipad and we do what NACD refers to as modular math. Here is a sample page and a couple of videos showing Sam doing his math.

We have a lot of work to do on math yet but I'm encouraged that he is making progress. Wait...that's another blessing!

To begin working on Sam's cross dominance issue we are working on his visual processing and also eye exercises such as hitting a ball extended on a string. Sam likes to hit it forward and back but struggles when the ball goes from side to side. We also use targets for the nerf gun and have him play basketball.

I use a button schedule for Sam to help guide him through his day. I put the buttons in a container, shake them up and then have him choose it and match it to the activity. The buttons are also part of a work box system to help organize Sam's materials.

For reading I use a variety of books and approaches. Due to Sam's cross dominance he requires a larger font and fewer words on a page in order to be successful at reading. Soooo...that made finding the right books difficult. Sam likes Arthur chapter books but the font is smaller and I need to blow these up on a copier to make them work for Sam. I have found a couple series of Scholastic books that work very well for Sam. The first is Discovering My World which corresponds nicely with the BrainPop videos.

I like these books because they have a single line of text on each page in a large font. The pictures are large and well done. The topics are interesting and engaging without going overboard. The books are written at about a second-third grade level and they teach the child about 5 major points on each topic.

My next favorite is the Welcome Books. These books also have large and interesting photos. The text is large and there is only a couple of sentences on each page.

I was recently excited to find another line of books at our library that also correspond well with the BrainPop video series. These are Lightening Bolt books.

They have vivid pictures, large font and just a few sentences per page. These are great books to also work on speech/language as you talk about the pictures shown.

I also record books on tape for Sam, again I Sammy-ize it. I use Henry and Mudge books and change the characters to Sam and Buddy. This way I don't need to make up stories I can just use the Henry and Mudge stories but peak Sam's interest by bringing him into the story.

Sam's absolute favorite books continue to be...books about Sam, go figure. NACD refers to these as Experience Books. The Experience Book pictured below is part of a series of books I put together regarding Sam's road trip this summer. I also use this same format to put review books together for Sam. Right now I am working on his animal classification and habitat book, using a single page for each animal and 5 good points to know about that animal. These books require some computer savy but they are relatively inexpensive to put together. I use 65 lb. cover stock, print the pictures and text from my computer and then put the pages into 8x8 scrapbook filler sheets. You can often buy these in lots inexpensively on Ebay. I laminate the front and back cover, punch holes and secure the pages together with pipe cleaners. Sam loves to read books about himself and his adventures. These books also allow him to share with his friends and family details about his trips. He reads the text and then can talk about the pictures. It has always been difficult for Sam to share because of his delayed speech.

To check Sam's reading comprehension we often play a treasure hunt game. I use old containers and hide messages through out the house. In Sam's case the treasure hunt normally leads him to a favorite snack. We work on Sam's fine motor skills as he opens the different types of containers (jars, toothbrush holder, travel soap dish, travel shampoo bottle...). He then reads the clue and has to follow the instruction. I try not to assist with the reading beyond pointing to the words or having him read it a 2nd or 3rd time. Doing something like this makes reading go from word identification to something more functional. He needs to read, think about it, remember it and act on it. Some days our treasure hunt goes quickly and others he struggles with comprehension and memory but he always loves to play.

I tend to use a variety of grade level books to get ideas. Sam isn't a huge fan of worksheets so I try to incorporate the ideas in ways that are more Sam friendly. Here are some of the books I browse for ideas.

Here is one of the reading ideas from the book. They had a printed story and questions.

I then take this idea and Sammy-ize it. Yep, that's my technical terminology. So I take the same story but make it about Sam and Buddy, which Sam would rather read about. I write it out on a white board (much more Sam friendly than paper and it allows me to increase the text size and spacing) and I make the questions multiple choice, circle the answer and verbal. Even though Sam struggles with writing it doesn't mean he is unable to do this type of work, it just has to be modified to work for him. So here is Sam's version of the same thing.

Here is another example of working with the beginning sounds of words. The book showed this idea.

And then I Sammy-ize it by putting it on a white board and using magnets that Sam can move to complete the words. So it looks like this:

Sam loves magnets and we remove the task of writing by using the magnetic letters instead.

In spelling we work on spelling things that are important to Sam, like his name. I now use a magnetic picture holder to attach pictures of family members, our house (so Sam can do our address), and items he would like to buy at the store so he can work on a shopping list.

One of my favorite science books because of all the cool projects and the fact that I can usually Sammy-ize them is this one:

We also do fun unit study's like "From Grub to Ladybug". Sam liked watching his ladybugs go from a grub to a chrysalis to a ladybug. We have also done the same with butterflies and will work on creating and observing an ant farm next.

I picked up these kits on sale at Shopko, all of them were less than $5.00 each. The really cool part of Ladybug land was that the top was a magnifying glass so you could see the grubs and lady bugs up close and personal.

I struggled for a long time with art projects for Sam because of his sensory issues he didn't like anything that got him dirty or was sticky or required glue or a scissors. I now found a cool little device called the Crayola Cutter which allows Sam to cut much the same way he would use a pencil or marker. After much work on sensory issues Sam has now become comfortable with paint and play dough. He enjoys creating his own masterpieces, telling me what they are and then displaying them on the refrigerator. Here is Sam creating.

And here is Sam showing his wonderful creation called "Beautiful Waterfall".

Now we also do field trips. Since September we have gone to Discovery World museum in Milwaukee. Sam loved how the water entered into the aquarium area.

He also loved to watch the jellyfish and didn't seem to appreciate my asking him where SpongeBob and Patrick were?

He really liked the same exact area that Ben was always fascinated by...the pulley and lever area. He got a pretty good workout lifting himself up in this chair. Not easy with Sam's low tone.

He also liked the atomic reactor area. I was so excited to see him listen to the computer and press the button when they told him to. Listening is a skill we are still working on.

Sam's absolute favorite part was of course eating lunch at the top of the museum on the deck overlooking Milwaukee and Lake Michigan.

Through our family support program we have a membership to the Milwaukee County Zoo so Sam can see his beloved otters. Of all the animals at the zoo, Sam is fascinated by the otters. Considering how much they move, swim and dive...I can understand his fascination.

He could sit there all day if you let him...

but we had other things to see, animals to classify and habitats to check out. Another fun area for Sam was of course...the zoo train ride.

He smiled from ear to ear again on this ride.

Sam loved the seal and sea lion show.

The show is entertaining and they keep things moving which helps to keep Sam interested.

Sam took this picture, he might just be a budding photographer.

Our final stop was at the butterfly pavilion. Unfortunately by this time Sam's hip was beginning to hurt and we had to end our day, head out to the car and allow Sam about 15 minutes to stretch out in the back seat before he was able to sit upright, put on his seatbelt and head back home.

We also purchased season tickets through our homeschool group to see the theater productions put on by First Stage Children's Theater. Our first play was Seussical and Sam loved it.

So...in between the medical stuff we have been keeping busy. Another blessing that has come our way through our Family Support program is a respite provider hired through College Nannies and Tutors. A couple of weeks ago a wonderful UWM student named Makenzie began taking Sam out and about around the community to give both he and I a much needed break. The break allows me to prepare Sam's homeschool program, run errands or just relax and it allows Sam to engage and have fun with someone besides Mom. Makenzie is studying to be a school psychologist and loves spending time with children with special needs. Sam really likes Makenzie and always looks forward to when she is coming. They have gone to the playground, on a hike, bowling, playing basketball and swimming at the YMCA, to the library and enjoyed the Port Washington marina. Makenzie comes 3 days a week for about 3 hours each time. I am so thankful that our wonderful case manager arranged this for us and that College Nannies and Tutors was able to find a perfect match for Sam and our family.

Sooooo, I have to say again...yes we have challenges and more than I thought we ever would but we also have blessings and for that I am thankful. Just the fact that after so many years Sam is finally working with me and we are enjoying his journey in learning together...that is a huge blessing for both of us. For my friends with children with special needs I hope I have given you some ideas and please, please feel free to ask me questions. I enjoy hearing from everyone!!

A few years' experience will convince us that those things which at the time they happened we regarded as our greatest misfortunes have proved our greatest blessings.
George Mason

Homeschooling With Sam!!

I didn't go into homeschooling because it is something I always wanted to do...it wasn't my passion. Sam had medical issues and immune system issues that made attending school very difficult. So after much pushing Ellen Doman, our NACD evaluator finally convinced me I could do it. First hurdle completed.

But then came the hurdle of Sam and I working together. This was more of a wall than a hurdle...and it was a really big wall. Sam is a great guy if you let him do what he wants to do and what he likes to do. Academics were not on Sam's top 20 list of things to do. Sam's inherent personality is pleasant but when asked to do something his response is simply "NO". Now let's take a "NO" boy and add in a mother that is not passionate about homeschooling and things can get ugly quickly.

I was comfortable going through the areas of Sam's NACD program that had to do with movement and I even quickly embraced flashcards...mainly because Sam liked them. But the academics presented so many difficulties for both Sam and I.

When I started homeschooling Sam was non-verbal. I found it really hard to continue to talk to, show, demonstrate things to a child that couldn't tell me if he understood any part of what I was saying. I had to rely on Sam's eyes, did he have that "I'm with you" look or was he somewhere far away. I had to rely on Sam's actions, was he moving toward me or away from me. Often times Sam would just move away. But that movement was communication...what you're doing doesn't interest me.

Another issue for me was when I thought about schooling I tended to refer to my public schooling experience. So I tried to create that in my home. Big mistake!!! Sam has never liked worksheets, he never has liked to sit at a table (unless he is eating) which now as I reflect back could have been an early indication of his hip issues. He is a hands on, make it fun and interesting type of guy. Oh yeah, and remember my auditory channel doesn't work all that well so I'm pretty much a visual kind of guy.

But as much as I failed in my early years of homeschooling...it really wasn't failure...because I was learning how to work with Sam. He was showing me what was going to work and what wasn't going to work.

Now add in Sam's hearing issues and the puzzle of working with Sam becomes even more complicated. Sam didn't respond to questions appropriately. Hmmm let me refer back to my school days. Teacher asks question, student responds inappropriately...teacher assumes the student doesn't know the answer. That would normally be the case...but then along comes Sam. Sam's auditory processing has been a struggle, add a hearing issue and the struggle becomes more intense. For the first 6 years of Sam's life, before he got his hearing aid, he attempted to guess at what people were saying. He maybe picked up on the last couple of words in a sentence but often his ability to hear and then understand was pretty much hit n miss. Now along with the hearing issue which affected his receptive speech abilities, Sam also struggled with expressive speech. Sam often knows an answer but can't pull out the right word or any word for that matter. I figured this out when NACD asked me to use word banks with stories and suddenly by glancing at the words Sam's ability to answer correctly went up significantly.

Now add in Sam's health and physical issues and Sam quickly becomes a very interesting child to educate. But if you have followed my blog you already know...I'm not one to back away from a challenge. We recently went to our NACD evaluation and I was thrilled that Sam's auditory processing was at a five but I also knew that it meant Ellen would check his dominance. I have always felt that Sam was cross dominant like his brother Ben since he exhibited many of the same struggles in reading and writing. Sam and Ellen quickly confirmed my suspicions. Yee Ha, another challenge. My signature for my email previously read, Sue Mayer, Mom to Sam (10) with Down syndrome, Brain Injury, Apraxia, Dysphagia, Respiratory/Immune Issues, Bi-Lateral Conductive Hearing Loss and now Hip Dysplasia & Perthes or as I like to say "Yada, Yada, Yada". It was my way of saying that Sam's labels do not define who Sam is...but I just couldn't add another one, so instead I changed my signature to Sue Mayer, Mom to Sam (10) who is genuine, unique and perfectly "Sam". I like that better.

My homeschooling over the years has become scheduled but not rigid. I changed out paper for white boards and magnets until Sam showed me he was ready for paper again. I have dealt with behavior issues, including complete non-compliance, hiding program items, tears, temper tantrums, choosing time out and an intentional lack of focus. I have struggled with my own demons of procrastination, lack of interest, lack of energy...just plain lacking. I am guilty of trying to find the perfect curriculum only to find that Sam will lead the pace, Sam will determine the interest and the curriculum that works for him will have to be tailored to him. I have tried the approach of "it's my way or the highway"...Sam quickly chose the highway.

And all along Sam was trying to tell me, show me, demonstrate to me that I needed to follow his lead...I needed to listen to him...I needed to understand him. If you would have asked me two years ago how Sam is doing with math, I would have told you it is non-existent and there is not enough medication in the world for me to tackle that subject with him. I bought the coolest manipulatives in the world and watched him hide them, shove them down a hole to the basement, feed them to the dog and throw them in the garbage. Sam hated numbers, he didn't want to count, he didn't want to recognize that a number was a quantity...he drew a line in the sand and dared me each and every day to cross it. But I just kept crossing that line. I tried new things, I tried old things, I used videos, sand, chalk, clay, magnets but each and every day we counted something, we tried something and gradually the light came on and Sam began to embrace this math concept. It's still slow but we are making progress...we didn't give up.

It isn't until I have a day like I did a couple of weeks ago that I finally realize the progress we have made. My love for and interaction with NACD often shows me the superstar kids. The ones that began speaking in full sentences when they were toddlers, the boys and girls that are having complete conversations by the time they are 7, the boys that are playing in Little League and competing on teams with their peers. I am happy for each of them but at the same time my heart still hurts for Sam.

And then he surprises me. The other week Sam and I were both sick. Now in the past Sam would have been happy to lay in bed and watch TV all day, he would have complained...no he would have staged a revolt if I suggested we do any program. But this time, Sam felt better before I did and as I lay in bed trying to get rid of a fever Sam pulled my blanket down and said "Mom, come here...come here now!" I just wanted to curl up in a little ball with my warm blankets around me and sleep but I've never been able to ignore Sam. We walked into our parlor where Sam now sleeps and I thought we were going to snuggle and watch a movie but Sam had different plans. Sam handed me his handwriting sheets and his DVD and said "Mom, Sam make better B's". You could have knocked me over with a feather. I put in the DVD and Sam said "Thank you Mom, Bye now". I walked out of the room thinking "Who was that child", maybe my fever is high enough that I'm hallucinating. I crawled back in bed only to be awakened a few moments later by Sam with more letters he felt he needed to work on. When he was done with his letters he called me again asking for his BrainPop movies. I was now sure my fever was getting the best of me. After his movie Sam was back in my room, pulling on my covers and demanding me to go with him. I shuffled through the front room and kitchen and followed him into the laundry room. Sam said, "Mom, Sam fold". As I got the clothes out of the dryer Sam laid out his Flip N Fold on the living room floor. I piled the laundry next to him and he told me to "Go bed, Mom". I was happy to comply.

A short time later Sam was back and wanting to do his words on PowerPoint. I began to say out loud "Who are you and what have you done with my child?" When he showed up with his math notebook I was sure my child had been abducted by aliens. At noon Sam plopped his gluten free bread and the peanut butter and jelly on to my bed. He came within inches of my face and said "Mom, sandwich please". I dragged myself out of bed yet again, shuffled to the kitchen and began to make his lunch. Sam suddenly whistled and said "Mom, listen", I said "Okay, I'm listening". Sam said "cow, dog, horse", "now you say". I began to chuckle, my little man, my dear, sweet, precious little man was now giving me sequences. I replied "cow, dog, horse". Sam smiled and said "Good job". I handed him his lunch, he smiled, said his prayer and then yelled "Everyone eating!" I walked back to my room, crawled into bed, folded my hands and thanked God for showing me just how far we have come.

"The difficulties you meet will resolve themselves as you advance. Proceed, and light will dawn, and shine with increasing clearness on your path."
Jim Rohn

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