Honor For All

As we commemorate our military personnel for their ultimate sacrifice this weekend, I am reminded of just how important it is to honor both the deceased and the living. Of course nothing trumps the sacrifice of laying down one’s life so that others are privileged to enjoy the freedoms of a democracy. We are truly blessed to have such opportunities in the United States. Despite our many problems, we still live in the best country in the world. One only has to travel to other regions of the globe or even read news headlines to know that this is true. I can tell you first-hand how fortunate Americans truly are based on my own personal travels and living in Europe for a time- as exciting as it was to see and experience other cultures, there truly is no place like home. Yet, I do see a trend that is disturbing and makes me wonder what the future holds for our beloved nation.

You don’t have to look too far to know what I’m talking about. Turn on the television, read the same newspapers, or go on social media. You will hear or see almost instantaneously folks being “dishonorable”, whether it’s reporting false news and/or saying mean-spirited things to others . Spirits are being broken and disrespect is the norm. People talk over one another instead of thoughtfully considering what the other person is saying. It’s OK to “agree to disagree”! It’s the dismissive, disrespectful way in which it is done that is so troubling. It’s a “me” first attitude- I don’t care about you or what you say or do. Can you imagine our soldiers conducting themselves in such a manner?! Our country would indeed be a very different place today if that were true. These qualities are the antithesis of who are military are and how they are trained. Respect, honor, dignity, and sacrifice are the creed of those who protect our country. These are also wonderful character traits of an outstanding town or neighborhood when it’s residents practice these principles.

The definition of “honor” is high respect, great esteem. Each one of us is worthy of these things and in turn, should demonstrate the same to others. Our special children are just as worthy of honor as anyone else, just by being themselves! Tireless advocating, educational/social opportunities, and familial/community support has made this possible for them. It has not been easy and continues to be a work in progress, but the way the world sees and includes disabled people has absolutely improved, even over the past decade. Sadly, I have occasionally witnessed and personally experienced disrespectful behavior towards Brian within the special needs community. This especially hurts, as you would never expect it to occur “amongst your own”, but it does happen. Fortunately this is the exception more than the rule.

How do I want to honor my son and others with disabilities? Let me count the ways…

1. People First- Disabilities Second! We are all part of the same human race with feelings, interests, and hopes, regardless of how small or significant one’s disabilities may be…

2. Sacrifice- Tireless efforts to improve our children’s quality of life, medically, educationally, and socially speaking, is our life’s mission that forces us to be on the front lines for a lifetime. We sacrifice tremendously, often at our own expense, physically, personally, and financially, but it is the honorable thing to do.

3. Advocacy- this reality is a given with a disabled child, whether we like it or not. Just like a soldier who would defend his brother in arms, we parents must always do the same when it comes to our special children’s rights. Because I honor my son, I will do my best to make sure he receives what he needs to live his best life. I may not always be successful in my attempts, but I will ultimately persevere and try to make things right because Brian’s life is worth this kind of dignity.

4. Loyalty- Our kids need our faithfulness and devotion in all things that we do for them, a tall order to fill indeed, as it will be for a lifetime. I often shudder and become overwhelmed if I ponder this thought for too long… so I try to to take things “one day”, sometimes “one moment” at time. I’m sure our soldiers in the trenches have often had similar thoughts.

5. Love- ” There is no greater love than to lay down one’s life for one’s friends” (John 15:13). This is the ultimate act of honor; your love and respect for your country and your family is such a powerful force that such self- sacrifice is possible. Brian brings that force out in me and Jim. We know many parents just like us. Love is a God-given gift that makes all things possible, especially the impossible! And the love our kids give back to us in return- there are no words to describe such sublime, honorable moments, and I wouldn’t trade them for anything!

Wishing you many loving, honorable moments with your family and friends this weekend and always. Thanks for reading! 😊

Oh, The Places You Will Go!

:, There is nothing like springtime: warmer temperatures, beautiful flowers, communions, weddings, and graduation ceremonies! For me, Spring has always represented a season of hope and expectation, the opportunity to begin each day anew . The dismal days of Winter are finally gone!! Outdoor festivities and light have replaced cabin fever and darkness-it’s amazing how this transition can change one’s mental perspective… it certainly has changed mine for the better, especially this year, when the Winter seemed especially long. Oh, the places I look forward to going to, even if it’s just to a local park to walk around!

One of the highlights of Spring so far for my husband, Jim, and I, was our niece, Fiona’s college graduation this past weekend! Fiona is a beautiful, young woman, smart, hard-working, and kind. We were thrilled to see Fiona graduate with many honors of distinction this past Sunday. She earned every single award with intelligence, persistence, and patience, the qualities that are typical of all very successful people. We have no doubt that Fiona will soar to even greater heights as she pursues her MBA over the next year. In fact, all 23 of our nieces and nephews are smart, good-looking, talented, and most importantly, kind/compassionate young people. God has truly blessed them all with many gifts! Brian is so fortunate to have so many caring cousins, as we are to have them! Their wonderful parents have raised them well and the tradition continues as they have started to marry spouses who are also “cut from the same cloth” and in turn, impart these values to their children. Jim, Brian, and I love them all and only wish that we saw them more often, as their lives have taken them to various parts of the state, country, and even the world ( we have nieces and nephews in Norway and our niece, Katie, and her hubby, Kit, and newborn, son, Max, reside in Australia!). Oh, the places they have gone, both figuratively and literally!

Milestones, such as graduations, are wonderful celebrations of achievements, and a reminder of the exciting future that lies ahead, but can also simultaneously be reminders of dreams that will not be realized for many special needs families . Such moments always hit me emotionally without warning, intense in their strength, but thankfully short in duration. This weekend was no exception. It’s like a major pulling of a heart-string, an ache, a longing. It’s bittersweet, and it hurts. Thank goodness Brian does not understand; it’s clearly my own issue as his Mom. Even Jim is often more pragmatic about the big picture for Brian than I am, although he too, has confessed his sadness on various occasions over many things we had hoped for Brian as far as milestone accomplishments and life experiences that will not happen. It is not easy- every parent has dreams and hopes for their child and when you are reminded that they will not come to fruition it is sad, yet, it is not the end of the story- hardly! We have (and continue) to have new dreams and hopes for our son. They may not be exactly what we expected or would have wanted for him, but healing, time, and life experiences have changed our perspective and life priorities. We try to have flexible expectations and remain hopeful, even when circumstances have been very challenging and have tested our faith. We have learned that God is always faithful, even when we don’t always trust Him, especially during a fiery trial. Somehow, things work out, even when we don’t feel it or believe it at the time. I only have to look back at the evidence over the past 15 years of my life to know that this is true. Oh, the places we have gone to! Some of those places I’d rather not return to, yet, to be honest, some of my most critical character building sessions have taken place there, making me a more mature, stronger person, essential qualities for raising a child with disabilities, when I look back in retrospect.

We were so proud of Brian this past weekend! There were several transitions and adjustments that he had to continually make: sitting in the car for the 4 hour drive each way, spending time with his Aunt and cousins who he hasn’t seen in a while , sitting in a noisy restaurant eating “different pizza”, and sitting for a 2.5 hour graduation ceremony. These are huge achievements for someone with autism! The aforementioned is an example of a world of routine being turned totally upside down. There is always potential for disaster to happen, we just never know when. We try to prepare with favorite snacks, iPad, music, headphones, etc, to make these changes easier and just happened to be very fortunate this weekend. Brian’s tolerance for the unfamiliar has certainly improved from years ago, but he (nor we) will ever be 100% free from this aspect of autism that causes meltdowns and frustrations for all concerned. That’s when flexible expectations come in very handy for us; I would never leave home without them!

When Brian was first born, we were given the poem, ” Welcome To Holland”, that uses a metaphor to describe raising a child with disabilities, comparing it to a plane ride , where you thought you were going to Italy, but ended up in Holland instead. The parents were disappointed, but learned with time it was just a ” different” place, where happiness and contentment could still be realized. To be honest, I despised that poem, especially early on, and most definitely when Brian was later diagnosed with autism. I would call that moment: “Welcome To Beirut-a Place where no one wants to visit, let alone live in”. I continue to struggle with this final destination and know I always will…

While the emotional wounds will never quite heal over and can be briefly torn open or triggered by various family milestone events, I know there are also our own historical milestone moments with Brian, with more to come. As a matter of fact, Brian will “graduate” next month ( with cap and gown!) and “move up” to the secondary program at his school. This moment in time will represent 12 years of patience, persistence, teaching, and love on behalf of many educational professionals, family members, and friends, who we affectionately call, “Team Brian”. Oh, the places you have taken us to, and the places Brian will go to! Some places will be less desirable than others, but I must always remember that they are not the final destinations, rather, they are merely “layovers” for better locations, a life journey that is really the same for everyone, disabled or not.

Until we meet again, thanks for reading! 😊

Be True To Your School

I have often heard the expression: ” God gives special children to special people”, and while I often cringe inwardly upon hearing this statement (especially on a bad day when there is nothing special whatsoever about your 14 year old throwing his clothes in the toilet, wetting his bed, or perseverating relentlessly via sign language for gold fish crackers 😫), most days I would have to agree. Life is often hard for and with our kids, yet I couldn’t imagine life without Brian, despite the trials and tribulations. Not everyone would be up for the challenges that we special parents have to face with our children, day in and day out. It is physically and mentally exhausting, while simultaneously exhilarating, especially when they achieve the smallest of milestones. Now don’t get me wrong- if I had a magic wand, I would definitely make all of the physical, mental, and emotional challenges that Down syndrome and autism have created in Brian’s life go away in an instant. Life would surely be easier for Brian, my husband, and I! In the meantime, hope and faith, along with other special families, continue to encourage us in our daily walk. Medical and educational outcomes continue to improve, innovations are always on the horizon, and Brian does continue to make his progress, step by step, albeit very slowly…

The lions share of this progress would also not be possible without the patience and dedication of the teachers who have been placed in our path, for they too, are “special people chosen to teach special children”. Ironically, I have an undergraduate degree in Special Education and a Masters in Elementary Education, but chose to work in the business world for many years first before finally coming home to the classroom. I initially taught high school Math and English for 2 years in the Resource room, before making a segue to elementary school as a Math and reading basic skills teacher for Grades 1-6 up until Brian was born. People often say to me that this background must have prepared me for Brian’s arrival, but nothing could be further from the truth. I had taught students who had mild learning disabilities, which is quite different compared to Brian’s issues. I was as equally overwhelmed, grief-stricken, and befuddled as most parents are when they learn that their child is born with a disability. I had absolutely no clue what to do in the beginning, and had to take things one day at a time. Fortunately, there have always been those exemplary teachers along the way that have been encouraging guides and in some cases, good friends. They have earned my utmost respect and my husband and I will be forever grateful to them for all that they do willingly and patiently for our son. This includes Brian’s current staff, for whom we are especially grateful for.

Brian goes to a private applied behavioral analysis (ABA) school for children on the autism spectrum. Most of the students who attend this school have complex challenges that require inordinate amounts of patience and dedication on behalf of the staff. I never fully understood exactly how much the staff did for the kids until I became involved in the school’s Parent Professional Organization (PPO), which is similar to the Parent Teacher Organization (PTO) in the public schools. I was the treasurer for the last 2 years and saw first hand how the financial resources of this organization were utilized for the benefit of the students. So many wonderful activities, field trips, and educational resources are sponsored by the PPO! Our kids receive educational experiences beyond the classroom that enriches their lives, as well as in-house resources that are necessary for their learning. It’s a great collaboration between Home and School for the common good of the students and also, I feel, an opportunity or a way of saying “thank you” to the staff for all that they do for the kids. It’s important that the staff know how much they are appreciated. I don’t know what we would do without them!

While not everyone can volunteer at school due to work and/or other personal commitments, there are still ways to support your child’s teachers that are much appreciated:

1) Communication- notes, emails, or phone calls to let the teachers know what a great job they are doing, and not just when there is a problem.

2) Homemade cookies or brownies- just because! You are thinking of them and took the time to express your gratitude.

3). Contacting your teacher’s principal or supervisor to brag about them- this is quite motivating- for anyone! 😊👍🏻

4) Attending school events/ teacher parent conferences- work schedules can make this impossible, but teleconferences can be an option! Any opportunity to support our teachers is a valuable investment for our kids.

5) Thank you notes mean a lot too, anytime of the year and for any reason!

Wishing all the women who teach special children, (whether you are a Mom, teacher, Grandma, Aunt, neighbor, or a friend), a very Happy and Blessed Mother’s Day! May you experience on Sunday all the love and joy that you give each and every day- thank you for choosing to teach and love our kids. Your vocation is certainly not for the faint hearted, in fact, many would not necessarily choose a career in special education. Yet, somehow you too, like we parents, are transformed for the better by our kids in ways that are extremely challenging, yet rewarding, step by step….

Until we meet again, thanks for reading! 😊