Life’s Burdens Can Be Opportunities For Grace

One of my greatest fears, besides dying before Brian, is becoming a burden to others when my body starts to fail me, leaving me unable to care for Brian. Genetics are definitely on my side though: both my maternal and paternal grandmothers lived to 96 years and 102 years old respectively. So, it’s very possible that I’m going to be around for a while yet… Perhaps modern medicine will advance to the point where I will have bionic body parts with no limitations, for anything is possible.. In the meantime, I realize the importance of self care, so I try to eat well, get enough sleep, and exercise. I do this for myself, as well as for Jim and Brian. No doubt the pandemic has negatively effected all of these routines dramatically this past year, but hopefully all of us can get back to our regular self care routines very soon for our own sakes, as well as for those we love.

Despite our diligence in persevering with self care that will benefit us and our families, there will still come that day when we may need help for ourselves. Of course we are used to providing assistance for our special needs children, in fact, most of us have had teachers, volunteers, home therapists, caretakers, and babysitters on board for an extremely long time. I thank God for each and every one of those individuals past, present, and future, who help us to help Brian, for without their assistance, I know that I would have aged much more rapidly. We will always need to depend upon others to help our sons and daughters, but our constant advocating and intense focus on our children’s needs leaves little room for consideration of our own. The routines and repetition of many mundane days with our kids is often the reality, while our bodies are simultaneously changing, slowing down, and physically hurting in many instances.

I was specifically reminded of aging when my Mom came to stay with us last Spring for several weeks during the coronavirus. Mom is almost 90 years and lives alone in the home where I grew up. She is incredibly remarkable for her age and I often forget that she is a senior citizen and has been for quite a while. My siblings and I were very concerned for Mom’s welfare when the pandemic first happened, plus she had experienced a dehydration episode that required a brief hospital stay, so that was the tipping point that brought her to our house. I learned a lot of things about Mom and myself during her stay with us over several weeks. There were many lessons in patience, compassion, and gratitude for ourselves, each other, and the realization that getting older is really hard… The spirit of self reliance is especially strong in my Mom. She is fiercely independent and doesn’t like to ask for help, nor does she ever want to be a burden to anyone, so it is difficult for her to accept help, even when it was apparent that it was necessary during this particular time.

As you can imagine, there were many days that I struggled with both Mom’s and Brian’s needs last Spring, a classic “sandwich generation” scenario, where one is carrying for both children and aging parents. It was definitely hard and sometimes quite exasperating, especially during a pandemic, but there was also a grace and an honor to this particular life experience. I learned from Mom what a privilege it is to care for the parent who cared so well for me when I was a child. Even in the midst of our struggles, I was ultimately reminded of how very fortunate it was for Mom and I to spend time this particular time together. We created new memories through our conversations over many cups of tea, sharing laughter, tears, and hugs. Mom and I also chatted about many things while doing chores together or cooking dinner. We talked about Mom’s youth, her special relationship with Dad, and stories about relatives in Ireland, as well as my grandparents. I feel very blessed to have spent this time with Mom and never take it for granted.. I especially loved the way Mom and Brian bonded during her time with us; it was another privilege to witness such love between the two of them.

Brian has taught me that he receives and gives grace as his burdens are shared with me and Jim. In other words, in Brian’s weaknesses, he is strong enough and willing to accept help for his challenges. There is no resistance on his part or pride that gets in the way of allowing us to help him; in fact, Brian welcomes sharing his burdens with us! Now of course, this is exhausting and I certainly wish Brian’s burdens weren’t so many for his sake, as well as ours. It is our hope that Brian will continue to acquire more independent skills, but it is a fact that he will always need 24/7 care. This is so scary to consider, especially when I know deep down that I may not always be able to take care of my son. I am blessed to enjoy good health at the moment, but who knows what tomorrow brings? The day will come when our bodies will decline and we may need help for ourselves and with our children.

This is when I really have to trust God for His provision of resources, even when I don’t see exactly how things are actually going to work out. Yet, I have learned, especially by the way Brian lives his life, that impossible situations are exactly God’s specialty when we rely on Him fully for all of our needs. It’s difficult to give up control in a world that covets self reliance and frowns upon dependence. In my personal experience, giving all of my burdens and concerns to God, like Brian, no matter what they are, and trusting Him for the details, is the best thing for my peace of mind. Now this doesn’t mean that I necessarily remain idle; I am still actively doing my part, while simultaneously trusting God for the outcome. Ultimately, He is always faithful..

I pray that I will always have the grace to accept my aging, and be willing to receive help for my burdens should I need it. I pray that I will trust, like Brian, that my needs will be met and that I have the courage to endure my afflictions, whatever they are, as I become older. I also pray that I will always display gratitude and grace towards those who may need to help me, as well as my son. May I have the privilege of growing old with the ones I love and I wish you the very same! God Bless us, Everyone! Until next time, thanks for reading!

Family, Friends, and Faith

Today’s blog will take a different direction than it normally would. Typically, I would write about a special needs topic “du jour”, but I wish to shift the focus to 3 of my favorite things that are relevant, whether you have a special needs child or not. I like to call them My Inspirations or The Gifts that I need in order to live this often very complicated life. I wouldn’t leave home without them, and because, like you, I am often stuck at home right now, I need to find a way to embrace them wholeheartedly. They are: Family, Friends, and Faith- now more than ever, we need these “three amigos”, as each one of us attempts to navigate our difficult daily circumstances. It isn’t easy and many days it’s just plain overwhelming to go one step further. I know that I have felt that way a number of times over this past year.

I think one of the lessons the Covid virus has taught us is just how many things we were not dealing with or facing prior to the pandemic. Back in the good old days, most of us were going about our daily routines, too busy to deal with relationship challenges , certain child issues, or issues within ourselves. Distractions are a powerful thing and give us the false impression that we’ll get to that “outstanding problem” tomorrow because we have too much going on today. Or maybe our problems will resolve themselves. We have all done this; it’s so easy to focus on other things rather than important issues that really need our attention. Let’s face it, it will take work, in some cases emotional work or maybe even physical pain that we don’t want to face. I am guilty as charged in this regard. In our defense, as parents of disabled children, there are certain days when exhaustion prevents us from getting even the very basics done. I have definitely been there too, especially right now, while Brian is mostly home. I have often wondered at the end of the day: how exactly am I going to get out of bed tomorrow morning and do this all over again? I will say some mornings are definitely harder than others and I pray that I can take things, one hour at a time… That has to be enough, at least for now.

Our relationships with our spouses/partners have also been challenged. My husband and I have never spent as much time in the 18+ years we have been together, as we have in the past 11 months. Jim had always worked long hours as long as I have known him, often leaving early in the morning and returning home shortly before Brian’s bedtime to read him stories and put him to bed. That was our normal routine for almost 18 years until March 2020. What an adjustment this has been for the 3 of us! Of course, there have been numerous positives, like more family time, no more long commutes to work, etc, but you can be sure that there has also been more conflict, getting on each other nerves, and the desperate desire for things to return as they were. Regardless of how much you love your spouse and children, each one of us still needs our own personal space, which has been at an absolute premium these past several months. A few blogs back I had mentioned how I had opened my kitchen window to let out a primal scream one day last Spring, when I was really feeling the stress of home demands. I confess this has occurred other times as well, and yes, it felt great! It’s still my “go to therapy when things get really dicey at home.

So, my husband and I now try to resolve issues that should have been addressed pre-covid, but we still get distracted sometimes and place our problems at the bottom of the inbox for “some day”. Right now is that “ some day” and it has not been easy, believe me, but we are trying. By the way, I am convinced more than ever, that men are from Mars and women are from Venus. It’s a wonder how men and women can even communicate and actually be understood by one another sometimes… We are a slow work in progress, even after 18 years. I sure do miss those old carefree days of distraction and denial, when challenges could just be postponed or not acknowledged at all . There is something about being constantly together that changes that, for better and for worse.. Yet, ultimately family ties are the ones that bind the strongest and deserve our undivided attention. Family is everything, especially during a pandemic, but in all seasons of life, regardless of what is happening. Family is our “go to”, our end all, and our home, regardless of where that is,or literally how close together we live.

Absence of connection over this past year has also made the heart grow fonder for our friends, many who we have not seen in the past several months. I’m grateful for the phone and social media, but there is no substitute for being together with those who we are privileged to call our friends or perhaps we may call some special friends our sisters or brothers, because we have forged such close relationships with them. I miss seeing my friends, giving them a big hug upon arrival and departure from our meeting place. I miss the laughter that we share, the listening ear, the latest news, encouraging words, and sage advice. I miss the ritual of sharing a meal with friends in a place of ambiance and warmth. I know that we will be able to create wonderful memories with friends once again in the future and look forward to that very much!

In the meantime, the waiting can be so hard, especially this Winter, when the cold weather, virtual learning, and constant confinement at home exacerbates loneliness. I know many of our kids feel this way too, and they especially, need their friends more this year than ever. Brian with his profound disabilities also understands the value of relationships with others, despite his inability to speak. Brian loves his bus friends, school staff, school friends, home therapists, and volunteers. Brian values the social connection that he has with each individual; they bring him great joy. Each one of us were born to be in relationship with others. Our lives derive more meaning and joy from our friends and it’s this gift of friendship that is often the glue that holds us together when the times are most difficult. I pray it won’t be too long until we are finally reunited with those dear ones who enrich our lives so much. I do believe this WILL happen, we just have to hang in there a little longer..Spring is on the way, and with it, warmer weather, outdoor activities, and times ahead with friends. Keep the faith and keep busy in the meantime, a wise friend once told me. I honestly couldn’t agree more! It is my faith that ultimately keeps me afloat in life’s high tide: when I am broken, I am made whole, when everything is hopeless, I am renewed with hope, and when I am weak, I am given strength to endure.

Speaking of faith- it is a big part of who I am now, but that wasn’t always the case. I was raised as a Catholic, and went through the rituals of Mass and grace before meals, but it wasn’t until Brian was born did I realize just how much I needed God . It’s funny how certain life circumstances can bring you to your knees: I would say that having a disabled child would qualify as one of those instances. My husband’s 3+ year odyssey with unemployment was another, as well as Brian’s additional diagnosis of autism and my colon cancer. It was truly the “trials of Job” for Jim and I during the first 11 years of our marriage where I spent many days asking God “why”? Wasn’t having a disabled child with Down syndrome and autism more than enough? How are we going to keep our home with Jim out of work? Colon cancer- are you kidding me?! Boy, was I angry!

Inevitably, and eventually, I got to the end of myself because there was no where else to go. I finally relinquished control and acknowledged to God that He would have to do something with our broken and what appeared to be hopeless circumstances. It was that very day back in September 2009 that God began to show his faithfulness and love for us. His love and support was ALWAYS there, but God has a way of doing things according to His timetable, not ours, and it’s for our best. Waiting on God’s perfect timing continues to be a challenge for me, though, so I have to often remind myself of His proven track record in my life. True to His nature, God was faithful in His provision of people, resources, love, and support from both our extended family and friends that got us through a heartbreaking, tumultuous time in our lives. We still wear the battle scars from these transformative life experiences, but we are stronger, more compassionate towards others, and have had our Christian faith renewed, none of which would have happened, if we had not gone through the fiery furnace. God already knew we would come out of these harrowing experiences refined like precious gold because of His grace. There is nothing quite like amazing grace, and my life has been forever changed for the good because of it.

One of my favorite Bible verses comes from Jeremiah 29:11: “ For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future”. Now more than ever, we, our families, our friends, and our nation, need hope for the future, as we continue to muddle our way through a difficult pandemic that has taken hope away from so many. I may not know what the future holds, but I know who holds the future, even during the darkest hours…

May God richly bless you and yours! May your days be filled to the brim with beloved family, close friends, and an unshakable faith in both good and bad times.

Until next time, thanks for reading. 😊

Dream Big And Often!

2020 was definitely the year of dreams unfulfilled and broken dreams. Many of us experienced this first-hand as the Coronavirus sneaked in like a thief in the night, taking beloved family members and friends, destroying businesses, and subjecting our children to a virtual way of learning that is both frustrating and isolating for so many. Perhaps it’s hard to imagine that our dreams will ever come true in the wake of this horrible virus. Life will never be exactly like it was previously, but that may not necessarily be a bad thing, rather it can be an opportunity to take a “self inventory” and finally prioritize once and for all the dreams that we have for ourselves, but have put on the back burner for so long. The past 10 months have certainly put everything on hold, but as we slowly turn a corner now and begin to finally see a beacon of light at the end of this long dark tunnel, this would actually be the perfect time to start realizing those personal dreams. I think it’s safe to say that the one thing the coronavirus has definitely taught us all is that life can suddenly turn on a dime, so make the most of the days that have been given to you, for tomorrow is truly not promised for any of us…

Like any other challenge, realizing your personal dreams won’t be easy. In fact, it will take a certain amount of discipline and determination, just like anything else that is worthwhile. And then there is special needs parenting that is a 24/7 proposition… Let’s face it: we special parents have been and continue to be so focused in making sure that all of our child’s needs have been met for so long, that somewhere along the way we have lost ourselves and our dreams. Part of that is the intense and constant caretaking of our children that really doesn’t leave room or time for much else. Yet, we can’t ignore that fleeting thought, or persistent voice that desires more… Perhaps at some level we feel guilty about actually doing something for ourselves because that takes time away from our kids and what they need, which is always something! When Brian was little I was very guilty of this; I felt I could never do enough for him. If I missed a therapy appointment or an opportunity of any kind that would enhance his life, I would berate myself for not doing such and such and honestly drove myself crazy! It was the classic case of perfectionism gone mad, though I couldn’t see it at the time. Is it any wonder why I was anxious and unsettled so often…While I don’t regret anything I did to help Brian, (actually, I’m glad, because otherwise I would have always wondered “what if ?”) I wish I had been able to relax more and actually enjoy many good moments that happened, regardless of interventions. Of course, hindsight is always 20/20…

The truth is, the best gift we can give to our children is a fulfilled parent, one who can somehow find a balance, even in the midst of an often chaotic life, because we need to, and because we are worth it! This is one of the most important life lessons I have learned as Brian’s Mom. As a parent, it is impossible to run on empty for too long. Sometimes, we don’t have a choice, depending what life throws our way, but we know how we feel when the roof finally crashes on our head because of self-neglect when we choose not to take care of ourselves. It’s not where we really want to be and our children certainly don’t benefit from this either. It’s time to make new plans for ourselves, starting with that first step..

What are your dreams? What have you been postponing for so long? What is really stopping you from taking the first step towards the realization of your heart’s desires? It doesn’t matter how small or large the dream is: the main thing is to get started. One of my fulfilled dreams has been writing this blog. Years ago, long before blogs were in existence, I knew I wanted to write in some capacity, but was unsure of my subject matter. Well, Brian’s arrival into the world became my inspiration! It would take several more years until I actually created the “Marvels and Moxie” special needs blog, but the point is, it finally happened. Self- publishing is another dream that I hope to achieve this year. Exploring Yellowstone National Park one day with Brian and Jim is another. Going back to Europe to see Italy, Spain, Portugal, and Scotland for the first time is another huge dream of mine. I have no idea how or when these things will happen, but I know that they can and am open to the possibilities that will get me there. Learning to play the piano is another; I have started with the very basics and have proven to myself that learning is indeed lifelong… What does all of the aforementioned have in common? A self focus that is fun, entertaining, and a break from the special needs world, a true balm for the soul!

I also have other dreams that are much simpler, yet just as satisfying and more of the self-care type: taking a nap, reading a non-special needs book for entertainment, or meeting a friend for a cup of coffee. Dreams fulfilled of all shapes and sizes make us happy, hopeful, and encouraged. They energize us to persevere in the tougher times and give us something to look forward to. We owe it to ourselves to listen to our inner voice and follow our hearts, for life is short. I can’t believe that I will turn 60 this year- it’s funny how you always feel young at heart, but the truth is, I have lived more than half of my life already. With the remaining days that I do have left on this earth, I would like to make them count with no regrets.

It is time to get started! Grab a piece of paper and a pen. Close your eyes and think about what really makes you happy, things that inspire you and give you joy. As these images appear, write down what you see in your mind’s eye- there are no wrong answers here, only possibilities. Reflect some more and keep writing, then relax when your list is complete. Review your list and see what you have already accomplished or what you you want to do in the future. Make a commitment to yourself that you will achieve all of the things that are on your list, one step at a time, no matter how long it takes… Refer to your list often for encouragement and keep your eye on the prize. Check off your accomplishments as they happen. Add more dreams to your list, delete those that you no longer want, for this is a fluid/ dynamic list. Pat yourself on the back for any steps taken towards the fulfillment of your dreams and reward yourself often. Repeat this entire process as needed!

One of the immediate benefits of the above exercise, is the ability to detach from our son or daughter’s needs, even if it’s just for a little while. We really need to give ourselves a break and permission to pursue our dreams. Over time, we can train our minds and bodies to relax and focus on ourselves, an absolute necessity for our physical and mental health. Many of us hope to outlive our special children; I certainly hope to be a “bionic woman” and be around that long for Brian. Fulfilling my own dreams is one of the ways I can do this, despite the challenges of time and effort, if I make this my priority…

Wishing us all “sweet dreams” of the realized kind, the ones that give us a sense of great purpose and fulfillment. We were created to live a full life, one that has balance and meaning. There is no doubt that our special children’s needs can make these goals elusive, but we can’t ignore our hearts desires, lest we do so at our own peril and theirs as well. Besides, it’s time to finally have some fun for a change; we definitely deserve it after all these months! Happy Parents equals Happy Children, one small step at a time, one day at a time..

Until next time, thanks for reading! 😊

My Grief, My Gain

2021 will be a year of major milestones for Brian. For starters, he will turn 18 this year, and with that, comes the “trifecta”: legal guardianship, social security, and Medicaid. First up is legal guardianship, a process that needs to commence 6-8 months prior to the 18th birthday. I don’t know why, but for some reason I had angst prior to making that intial call last week to get things started. I distracted myself with other stuff on my “to do list” last Monday until the day was over, then woke up with a heavy heart on Tuesday morning, knowing that the inevitable had to be done. So, I took a deep breath and made the phone call, surprising myself with just how thorough and organized I was while providing the necessary information. After the phone call, I thought, “that wasn’t so bad” and patted myself on the back for accomplishing this goal. Then out of nowhere the tears began to flow, steady and many, along with an indescribable weight on my shoulders and a broken heart. The old wound ripped open once again, with searing, inconsolable pain…

Grief is a curious thing; it never quite goes away, despite time, tears, and new seasons in life. Just when you think Grief has been tamed and put in its proper place, it can suddenly reappear out of nowhere, with the same intensity as the first time it arrived. Grief is an inevitable part of the deal as a special needs parent. I wish that wasn’t true, but it is an undeniable fact. Of course everyone will experience grief in their lives at some point, but our grief as special Moms and Dads, as it relates to our children, is directly proportional to the challenges/ losses/ lack of milestones that our kids go through. In our world, there is a sense of loss and grief over many things for our children that they will never be able to do or experience, unlike typical children. I find that there is never a right time for Grief to arrive on the scene, and in fact, it usually shows up at the most in opportune moments. No matter how much you might fight it, suppress it, or deny it, Grief will continue to persist, even when you think it’s been eradicated.

Last Tuesday was one of those days: Grief had me cornered, forcing me to confront my feelings and why I felt such despair. I concluded that I had good reasons to feel such profound sadness; perhaps you can also relate to my situation. Thinking about Brian turning 18 this year automatically brought me back to my 18th birthday. What happened then? I can tell you it was a very symbolic birthday, filled with great anticipation of the future. On that special day, I became a legal adult, I could also vote, and officially drink alcohol- wow, what a trifecta that was! I also had a boyfriend, got my first used car, and had received my acceptance letter for college, another trifecta! Most of us can look back at this time in our lives with great fondness and anticipation of the future- the world was truly our oyster with no limits and endless possibilities. It was these very things that I was reflecting on last week after the guardianship phone call that set the wheels of grief in motion.

Unlike my 18th birthday, I know that Brian’s will be exactly the opposite. He won’t be able to vote, drive, go to college, or have a girlfriend. Brian’s future will be determined by others; he is unable to have a say in what will happen to him. Brian will always depend on others for his future. Legal guardianship ensures that we, as his parents, have the legal right to make decisions for Brian when he becomes an adult because he is unable to. This is not what special parents hope for their children, nor is it natural, but this is often the reality and it is very hard. We have to constantly advocate, adjust, and dream new dreams for our kids. Our love for them drives us to provide a meaningful and fulfilling life that takes an entire village, the strength of Hercules, and numerous resources. Of course, we wouldn’t have it any other way and are determined to help our disabled sons and daughters live their best lives. But such an assignment comes at a huge price with equal amounts of love and grief. It is our reality and legacy, with so much that is expected of both ourselves and our children.

Fortunately, Brian is none the wiser regarding his 18th birthday or the many implications from it. I am extremely grateful that he doesn’t understand what he is missing, for that would bring on another heartache of mass proportions. Brian is a joyful young man for the most part and we have learned over the years what truly makes him happy. My husband and I have been blessed along the way with the goodness and resources of others who love our son, and they have helped us, to help him. We take great comfort in this, and our circuitous special needs journey has certainly been rich and rewarding in many ways as a result. Most importantly, Brian genuinely enjoys his life, including his repetitious routines, food, water, music, and the love of those who care about him. I would like to think that we have played a part in his sweet nature, but I also think this is the personality that God blessed him with, so that he can bless others. Brian brings us great joy, despite the hardships and heartaches. He is OUR heart, which is why it tends to be so fragile and breaks easily whenever major milestones are unfulfilled. This is the price of a deep, abiding love that will always be for our beautiful boy.

As much as I hate to feel Grief , it does remind me that I am alive to life, and my feelings. I think the alternative of not confronting Grief on its terms can be ultimately debilitating. You hear about people who “stuff” their grief instead of dealing with it, so the end result is perpetual anger, a disconnection from life, and even major illnesses. In my personal experience, as much as the grieving process hurts for our children , coming out on the other side of it has its rewards: resilience, perseverance, and love. Just when you thought you had enough of all 3 to last a lifetime, the latest episode teaches you that you have increased each one of these gifts exponentially. Just when you thought you couldn’t love your child anymore than you already do, grief shows you just how big your heart really is. It is these things that enable me to “keep on keeping on” with equal measures of God’s love and grace, for without His help, I can’t go one step further…

This New Year will undoubtedly bring new milestones for our special children, as well as accomplishments, setbacks, heartache, and hope. Our special needs journey guarantees these things and always will. While we won’t like being “refined in the furnace” during those inevitable times of trial and grief that will come our way, may we remember the rewards that WILL await us as a result of our courage and fortitude for facing the grief, even when it feels absolutely horrible. It is ultimately for our good and we WILL get through these hard times, one at a time… I try to remember everything Brian and I have already been through in our lives when trials do come and am reminded that we have an incredible history of being SURVIVORS! We already have a solid background in “survivorship”, so this will always serve us well when the going gets really tough. We, along with our amazing kids, are truly made of the “right stuff”, even when our circumstances would tell us otherwise.

As we take one day at a time in this eventful special needs journey with our sons and daughters, may we also savor those joyful moments with our children that are also inevitable. We have many memories and photos to document these times over the years and more of the same is on the way! While Grief is necessary sometimes, it is NOT our child’s complete story, nor ours for that matter..

Until next time, thanks for reading! 😊

Welcome To The Land of Perpetual Prompting

We gladly begin a fresh new year with the hope of healthier times ahead for all and things to look forward to! It will be a relief to finally put the coronavirus behind us with vaccinations and time, so that we can proceed with those routines and pursuits that have been on hold for so long. For those of us who have special children, though, there will inevitably be certain things that will remain exactly the same in 2021, just like in previous years. There will also be changes in our son or daughter’s development: this is a given whether a pandemic occurs or not, and is an annual occurrence that we can also count on. The acquisition of skills, (or decline in them), depends on a multitude of factors. While the learning spectrum for our children is quite broad and varied, the actual learning of skills is often done with lots of repetition and prompting for most children with autism. When you think about the number of tasks that you try to teach your special child from sunrise to sunset and consider the number of steps it takes to complete each one, it is quite daunting! It is also exhausting, repetitive, and never ending….

The last several months together at home have reminded me just how intense the learning process is for Brian and how I long for him to be back in school full time. Let’s be honest: as much as we love our kids, too much time together under these circumstances is so maddening! Our children want their routines back as much as we parents do! I am a former teacher, but I am also Brian’s Mom, and that is my primary role. I often learn alongside Brian and have an even deeper appreciation for the teachers, therapists, and volunteers for all that they do. I try my best to implement what I have learned from the professionals to help my son. I also pick and choose what I believe to be most relevant in his life and what he will need in the future. Brian’s actual remaining time in special education is short: he has a little over 4 years left and then he is done! It’s so hard to believe and the very thought scares me to death! In preparation for this major transition in the future, we focus on those basic skills that Brian will need to have as adult NOW, with the hopes that he will learn as many as possible, but with the understanding that Brian will ALWAYS need assistance with every one of these skills for the rest of his life.

Welcome to the Land of Perpetual Prompts! Every skill that Brian learns requires hand-over-hand assistance with simultaneous verbal prompting, for each step, with lots of repetition. Eventually, I am able to fade the physical prompting for some skills, but not for most. Brian’s poor fine motor abilities (due to his cognitive delays and low muscle tone as a result of Down syndrome) makes it very challenging for him. Add autism and a “teen tude” to the mix, and it’s quite a mountain to climb each time. Our kids run the risk of becoming “prompt dependent”, where they can rely on the verbal or physical prompt when it is no longer necessary, so there’s that… Sometimes, it can be hard to differentiate between the two. Sometimes, there are huge achievements to celebrate. Sometimes, there are skills that are not happening, no matter what we try or for how long. Sometimes, I shake my fist in the air out of frustration. Sometimes, I just take a deep breath, sigh, and acknowledge that tomorrow is another day to try again. Sometimes, I wonder just how long I will be able to do this…

Regardless of my reactions, Brian remains consistently resilient, at least most of the time. I actually am in awe of him: Brian is the like the little engine that could! He will complain often and may not want or like to do something, but ultimately, with time, repetition, prompts, rewards, and encouragement, Brian continues to persevere and try. He has done this all of his life! It speaks volumes of his character and fighting spirit, despite all the obstacles that are placed in his path due to Down syndrome and autism. Brian will always have to work very hard for the most basic things in life that most of us take for granted. I can tell you this is hard to witness at times, but, I am very grateful that this truth has not changed his beautiful heart and fighting spirit to achieve the things that he can in his own time. I couldn’t be more proud of my boy! He continues to teach me so much about my own limitations and priorities and what they really should be…

Today is just another day filled with perpetual prompts of the physical and verbal kind, along with the hope that this will be THE day that our son or daughter achieves a particular skill or a task that they have been working on for days, weeks, or years. Yes, today just might be that day! If so, what a celebration that will be, filled with praise and favorite rewards. All of the effort and hard work has finally paid off! When these days happen, savor every delicious moment, and reflect on these successes often, especially during the inevitable difficult days ahead. Parents need hope and encouragement just as much as their special children do. Defer to your children often; even non-verbal children, like Brian, can communicate quite clearly what is working or not working for them when it comes to learning skills. I have had to learn Brian’s “language” so that I know how to proceed. Follow their lead, encourage every step, have very flexible expectations, and don’t give up, but do take breaks, because it’s humanly impossible to parent a disabled child without them. Adapt, revamp, create, move on- whatever it takes for your child to learn best, while minimizing frustration for all concerned. Remember, nothing is written in stone. I often ask myself the question: “ How important is X skill really? How important will it be to Brian next year or 10 years from now? The answers to those questions usually determine where we place our time and effort.

Perpetual prompting perhaps peeves people (especially parents), but in its proper perspective, it is just one of the many tools that we use to teach our children skills that they will need to learn. Special kids eventually learn independence from the prompting process in many instances to the point of no longer needing prompts at all, except for a verbal reminder. This is the ultimate goal and why we persevere with the prompting process to begin with and what keeps us going. Yes, it definitely takes the patience of Job and strength of Hercules to prompt our kids every single waking hour of each day, so pay careful attention to not only how they respond, but check your own reactions as well and take breaks as needed.

Best wishes for a very healthy and joyful 2021! May this be a year of great hope and joy for your special children and families! Keep on keeping on with all things great and small this year , prompted or not! Until next time, thanks for reading! 😊

Me and My Beautiful Brian on New Years Eve 2020

Resolutions I Can Keep

It’s hard to believe that 2021 begins exactly one month from today, and for most of us, not a moment too soon! I, too, can’t wait to kick 2020 to the curb and slam the door on a year that has been so eventful and frustrating. While there have also been extraordinary moments of bravery and hope in between the sorrowful ones, I think it is safe to say that everyone is looking forward to the New Year. January 1st represents a fresh new beginning, a clean slate, to write our resolutions on, and hopefully the discipline to actually carry them out. I usually break mine within a few weeks, but perhaps 2021 will be different in terms of what we are determined to change for the better. This year has certainly taught us what we can’t control, how to make the best of extraordinary circumstances in order to cope, and how difficult these things can be. Our priorities and values changed ( who knew toilet paper and paper towel purchases would be an actual shopping goal?!) and our time with family was the most we ever had in years. I have spent more time with my husband this year than in the past 18 years due to his long work hours. Most of the time, this was a good thing, and we often say that this is one of the silver linings of the pandemic. Conversely, the opposite has also been true and we can certainly get on each other’s nerves from being at home together for so long. Thank goodness we have enough room to spread out! Yet, it is truly a blessing that Jim can work from home, but still, like you, we long for our normal routines to return.

Besides those directly effected by Covid 19, another major change and challenge this year of course has been remote learning, an absolute struggle for so many kids, and a year of education that they will never get back. Brian is very fortunate to have school support at home and he definitely needs it! Left to our own devices, remote instruction this Spring for Brian and I was a complete disaster and resulted in huge frustration. We were certainly not alone, in fact, millions of other students, both special needs and typical, were and are still going through the exact same experiences. Online learning has its limitations and there is no substitute for in-person socialization, especially for kids. I can’t imagine how young people must feel being isolated from their peers and sharing experiences that are as important as the academic lessons taught in the classrooms. It’s a travesty and will hopefully become a situation of the past in 2021, especially with vaccines coming soon. In the meantime, we try to look for the good and take each moment as it comes, for what other choice do we really have?

My resolutions for 2021 will be flexible and more realistic than in previous years. The events of 2020 have been a good teacher, reminding me of what really matters and what doesn’t. I suppose getting older has something to do with it too; one becomes more practical and reflective of life at a certain age. My priorities have certainly changed over a lifetime, all by choice, and most of them for the good. The bad choices have been discarded and I try again, another life lesson that was learned. Wisdom with age has been an extraordinary gift that I now embrace instead of resisting, which I did for a very long time. Brian certainly continues to teach me extraordinary things about life’s priorities as well, profound truths that result in true peace and joy.

Here is Brian’s formula for a good life that will continue in 2021: love with your whole heart, no matter what! An unsolicited bear hug is one of the best gifts that you can offer a troubled soul. Greeting and sharing a genuine smile with others may be the only good thing that a person experiences in a day. Don’t give up- keep trying, despite your developmental disabilities, your fatigue, and frustration. Laugh loud and often! Watch lots of Disney movies. Hold hands and say prayers of gratitude and thanksgiving. Be patient and kind, especially when it’s hard. Remain steadfast and hopeful in all that is good and worthwhile. Remember, this is a marathon that we run, not a race. Be open to new adventures and lessons, no matter where life takes you, especially to places you would prefer to avoid. Live like today is your last. When all else fails, go swimming, then get in a hot tub! Sounds like the perfect resolutions to live by! My beautiful boy is truly one of the wisest people I have ever known..❤️❤️❤️

I’m using Brian’s list as a template for my own Top 12 Resolutions in 2021 and beyond. Of course there will be more, but here are some very important ones I’ve come up with: (please note I will never resolve to exclude chocolate or wine from my diet ever again, or exercise 7 days a week- how crazy, it was never going to happen anyway!)

The 2021 Resolution List

1. I will take breaks without guilt

2. I will laugh and cry freely

3. I will take naps and do absolutely nothing when possible

4. I will say no more often

5. I will look for opportunities to be helpful, to care, and to share with others

6. I will choose to look for the good in bad situations and learn from them

7. I will be open to new opportunities, adventures, and possibilities in life

8. I will get more sleep

9. I will make sure to physically move every day for my mental health

10. I will make plans to look forward to

11. I will eat chocolate and drink wine

12. I will trust God in all areas of my life, every day, and leave the details to Him, no matter what.

This concludes my final blog for 2020. Thank you for following along! It has been a blessing to share this special needs journey with you thus far; I anticipate there is much more to come in 2021 for all of us! In the meantime, may the joy and peace of this holiday season touch your heart and propel you forward into the New Year with great expectation and hope! It has been a difficult year for sure, but the best is yet to come! From Chez McDonnell, we wish you and your family abundant blessings both big and small in 2021. God Bless us, Everyone!! 🎄🎄❤️❤️🎉🎉

It’s Time To Lighten Up With Laughter

“Humor is a prelude to faith and Laughter is the beginning of prayer.” -Reinhold Niebuhr

The world can certainly be a very negative, draining place, especially these days, and it can rob us all of joy and peace, IF we allow it to. It’s quite easy to get sucked into drama and dialogue that is ultimately destructive for those who participate, regardless of topic. Add our own personal challenges, along with those of our special children, and the end result can be one hot mess! We can easily become jaded and frustrated with situations and people that are beyond our control. Everyone experiences these moments of course, and we can expect more of the same in the future. The key is not to remain “stuck in the muck” indefinitely… Somehow for our own well being, as well as for those around us, especially our children, it behooves us to move forward and to “ let go” of those people and things which don’t enrich our lives in meaningful ways. Self forgiveness is also a very important part of self care that is imperative, I find, especially as I get older. All of us have and will continue to make mistakes for as long as we live, but if we can learn something from them, then there was a purpose for them to happen in the first place. Being true to ourselves is also essential and is the highest form of self respect. We can always simultaneously be respectful of others as well: we can choose to “agree to disagree” and recognize that this is OK and to be expected. Not everyone has to be our best friend, yet, we can still treat others different from ourselves with the same kindness and respect that we would hope to receive. Besides, we special parents already have too much going on at home with our kids to be sucked into situations that won’t matter days or weeks from now. It’s just not worth it!

I have found throughout my life, but especially since Brian was born, that cultivating a sense of humor and laughing often have been absolutely essential for my sanity/well being, and have also made all the difference in terms of how I live my life. Yes, there are indeed a lot of heartbreaking tragedies that happen each day. Each one of us will face personal adversities and will be knocked down for the count . I think it’s safe to say that most special parents feel that way as they raise their disabled children; it’s a very mixed bag of intense joy and sorrow that will last for a lifetime. Special families will always have hardships to face with their kids, some of which are beyond overwhelming.. That’s a harsh reality that I often struggle with, especially in moments of exhaustion, which is why having a sense of humor in the midst of these inevitable trials can make things a lot more bearable! Belly laughs, you know, the ones that make you cry and your stomach muscles hurt, is a powerful balm for the mind and heart. You feel mentally and physically better after experiencing one! I like to think of people and things that make me laugh and lighthearted. THIS is where I choose to place my focus, then my troubles don’t dominate my thoughts and are more manageable.

Today’s world certainly gives us many reasons to automatically become negative in our thinking, leaving no room for other healthier alternatives. It is tempting to take the bait, in light of Covid 19, family stressors, and the upcoming Winter. Collectively, these things have the power to really take us down and keep us “trapped”. It’s a horrible physical and mental place to reside in! One day this past May, I had literally opened my kitchen window, stuck my head outside, and let out my best primal scream out of frustration. Like the rest of the world, I was also so sick of being inside at home for so long and was feeling quite depressed . It actually felt quite good to release that stress, very therapeutic as a matter of fact, but certainly not a long term solution to my problem. To avoid primal screaming ( or much worse) from becoming a regular habit, I needed to think of alternative ways in which to handle my difficult circumstances while in the midst of them. Laughter and humor is a sure way to make things a lot better and it always has throughout my life. There is always at least something to make me laugh and very often multiple things. It’s all just a matter of desire and perspective!

There are humorous/ funny things that I can use daily to help me “ lighten up” and laugh, even in the midst of adversities. I encourage you to find those things that make you laugh, no matter what your circumstances are. It will make all the difference in your life perspective when you choose humor and laughter. Coping in general is so much easier with a sense of humor and detaching from problems that have the potential to consume your life is one of the many rewards. I especially love to watch funny movies, TV shows, and be with people who are upbeat and can make me laugh. Who doesn’t? We all know such programs and individuals and should take advantage of the gifts that they offer. Even better, is when we can offer the same sense of humor back to a friend who may really need it. Humor and laughter can be very contagious and should be something this is shared. Laughter is also medically proven to improve your health by releasing endorphins, those “feel good” chemicals, which are directly related to one’s well being. It’s amazing how our bodies are wired to heal and for wellness if we are willing to respond to the cues that are provided for our benefit. There are additional physical/ emotional and mental benefits to laughter, perhaps ones you have never considered before..

Reasons To Laugh A Lot! 🤣

1. When you laugh the immune system is boosted- a huge plus, especially right now with concern over Covid and other illnesses.

2. Physical pain can be reduced with laughter. I found this to be 100% true during post-surgical recoveries and chemo infusions. I read funny books, watched humorous shows, and actually found myself in funny situations with various medical personnel and patients during these otherwise very difficult times. The laughter helped so much!

3. Laughter can enhance organ function, when you take in deep oxygen, especially with belly laughs! 🤣🤣

4. Hearty laughter decreases blood pressure and heart rate. ❤️❤️😊😊

5. Laughter is a mood-enhancer, uplifting, game changer. I would never go anywhere without it!

6. Laughter can cultivate a great sense of humor and who doesn’t want that, especially in current times?

7. The “feel good “ chemical, Serotonin, is increased in the brain when we laugh, which leads to stress reduction and relaxation of muscles.

8. Laughter also reduces blood sugar levels in diabetics and non-diabetics alike. Laughter is truly the best medicine!

9. Laughter provides an emotional connection with others and is often the glue that keeps us together in our relationships. Having a sense of humor and finding reasons to laugh has made all the difference for my husband and I, especially during these unprecedented times. Otherwise, let’s face it, it would be too difficult to be home together long term like this!

10. Laughter is a contagion that you DO want to share with others! So many of us are struggling for various reasons right now and need hope, support, and quite frankly a good laugh to get us through the tough times. We all benefit when we can laugh at ourselves or together with others. I honestly would put laughter right up there in the number one position with love and very often the two are intertwined. 🤣❤️

As the holiday season approaches, there are many reasons to feel sorrow and despair, especially this year. This is certainly understandable and actually necessary, to feel the disappointment, anger, and grief over losses in our lives. Like you, I have experienced less than desirable circumstances and have had to go through the inevitable passage of pain in order to be free on the other side of my sadness. Laughter and humor have always been my constant companions through every hardship, though, and always will be..

Wishing you and your loved ones many reasons to always choose laughter and humor, even when there are as just as many reasons to cry and give up. May the laughter that you seek be a blessing to your heart, mind, and spirit. Share the laughter and be the humorous bright spot in someone’s day, for you may be exactly what that special parent who is struggling with their son or daughter needs at that very moment. Be the Laughter, Humor, and Hope!❤️🤣❤️🤣❤️🤣

Until next time, thanks for reading! 😊

100 Reasons To Be Grateful

I think the month of November should be declared “Gratitude Month”, a perfect segue to Thanksgiving in just a few weeks. In these particularly tumultuous times, we can all benefit from being grateful and exercising gratitude. It’s very easy to become ungrateful when things don’t go our way, or when we take for granted the riches that we do possess, because the end result when we do go down this path will be dissatisfaction and emptiness. This is particularly true when we acquire material possessions; the initial allure of having something new can be very exciting, but eventually these things loose their luster. We yearn for more “things” to fill us up until the next inevitable void that follows. We think the next new item, relationship, etc. will change the outcome, but it doesn’t happen, regardless of how often we try. It’s actually the definition of insanity when you really think about it: doing the same thing over and over again and still getting the same result, despite your conviction that things will definitely be different this time! I know that I have been certainly guilty of doing this on many occasions!

We eventually learn that “the void” we feel is actually a spiritual one, so no amount of possessions will ever satisfy the heart because it was never meant to in the first place! Heart and spiritual contentment comes from more concrete and lasting treasures that are priceless, ageless, and enduring. We have the opportunity to choose these gifts, which result in gratitude and a peace that fills the empty vacuum that each one of us possess. When given a choice, I will seek peace and contentment, for personal experience tells me that theses things are way more rewarding and enduring than material possessions. Don’t get me wrong- I love nice things just like everyone else- who doesn’t?! I just don’t place my hope or main focus on earthly treasures that are fleeting and will one day be gone and ultimately won’t matter. I have learned throughout my lifetime, that it is definitely possible to be grateful , regardless of how much or little I possess. Yes, it is a conscious choice and it is NOT always an easy one to make, but is it worth it? I would say with whole-hearted conviction: 💯 ABSOLUTELY! It is from this mindful place, that an “attitude of gratitude” is possible and where my top “100 Things I Grateful For” comes from:

100 Things I Am Grateful For

1. My Christian Faith- God’s love and grace help me to endure this earthly race- the rhyming here was just incidental, lol

2. My Family- To be blessed with a good family, both immediate and extended.

3. My Friends- Life is sweeter, funnier, and more bearable with friends- I am so fortunate to have the ones I do!

4. Brian’s Extended Special Needs Family- From the moment Brian was born, Jim and I have met many incredible special families, medical and educational professionals, as well as dedicated volunteers who have supported and guided us throughout this special needs journey. I thank God daily for all of them!

5. My health- I have had some ups and downs healthwise over the years, but am so lucky to be in good health at the moment- priceless!

6. My life experiences: education, work, and travel. I had the opportunity to try different careers, as well as travel, with a good education. I look forward to future travels and other life adventures!

7. Hot coffee-a definite daily MUST!

8. Chardonnay- chilled, please!

9. Chocolate 😊👍🏻

10. Belly Laughs

11. Sunsets- NEVER sunrises, I generally sleep through those, lol

12. Hiking/walks

13. Hot showers

14. Clean clothes

15. Brian’s smiles and deep hugs 😊😊😘😘

16. Sleep, which is definitely underrated!

17. To be an American🇺🇸

18. Home-cooked food

19. Ice cream 🍦

20. Fresh air

21. Music

22. Beautiful singing voices

23. Children’s laughter

24. Solitude

25. Tears

26. Modern Medicine

27. The sound of the school bus when it arrives to take Brian to school! 🎉😊👍🏻

28. Fresh Flowers

29. Baked Bread

30. Italian Food – my favorite!

31. Campfires

32. My home

33. Scented candles

34. Prayers

35. The Beach

36. Air travel

37. My Mom’s advice ❤️❤️

38. My Dad’s guidance – even from Heaven now❤️❤️

39. Heaven- my eternal home

40. A good read

41. Jokes- all kinds, especially the practical ones! 🤣

42. Grace and Wisdom

43. A sense of humor- an elixir for whatever ails you!

44. Leftovers 😊👍🏻

45. Netflix- especially during Covid!

46. Fall Foliage

47. Dairy Queen Blizzards

48. My church community

49. Serendipity

50. Random acts of kindness

51. Peace

52. Choices

53. Freedom

54. Comedy

55. Opportunities

56. Writing as catharsis

57. Hope

58. Costco- no joke! What a store!

59. Snow on the trees

60. A roaring fireplace

61. Hair color – a necessary self-indulgence

62. Handwritten letters/cards

63. Facebook- especially for social connection during these isolating times

64. iPads, iPhones – the technology is amazing for everyone, especially the disabled!

65. The future and the possibilities it holds

66. A shoulder- both to lean and cry on

67. Cherry cheesecake

68. My 5 senses, which are definitely changing as I age, but still working! 😊👍🏻

69. My teeth – so far, I have all my original ones! 😁

70. Opportunities to share time, resources, and hope with others

71. Meaningful conversations

72. A regular routine, especially right now!

73. Brian’s joy when he accomplishes something and knows it!

74. Respite ❤️❤️❤️❤️

75. People who believe in Brian and are determined to help him learn, despite the challenges that he presents. #EternallyGrateful

76. A big slice of chocolate cake

77. Water- the ultimate life source for everything

78. Being Jim’s Wife

79. Being Brian’s Mom

80. Great neighbors

81. Reliable and fair-priced contractors

82. The ability to experience and express a range of emotions: joy, sorrow, love, anger, etc

83. Adversity that has made me stronger and a more compassionate person

84. Naps- whenever I can take one!

85. Last minute travel adventures

86. Mercy

87. Forgiveness

88. Each new day, aka, new opportunities

89. Honesty

90. Flannel sheets

91. Breakfast in bed

92. Meditation

93. A positive attitude

94. The ability to learn from my mistakes

95. Girls Nites Out! ( or mornings/afternoons)

96. I’m never to old to learn something new

97. A good cry

98. Physical exercise

99. Words of encouragement

100. Inspiration- it’s all around us!

I’m sure you can come up with your own gratitude list and would encourage you to do so! It’s not only a good exercise for the mind, but it’s also a wonderful reminder that there are always things to be grateful for, despite these uncertain times that may tell us otherwise. I pray all of us can maintain an attitude of gratitude through the trials and tribulations of life, for it is truly our best defense against despair. May you and your loved ones be blessed abundantly with the things that truly matter- Happy Early Thanksgiving! Until next time, thanks for reading! 😊

We Are Survivors!

It is time to pat ourselves on the back! We deserve huge accolades, applause, and high fives for all that we do on behalf of our disabled children. This blog is for us- the Moms and Dads, aka: The Survivors and Thrivers in this often crazy and “never a dull moment” life that we share with our special children. Sometimes, I will reflect on the past 17+ years with Brian and wonder how exactly did I accomplish so much on behalf of my son? I don’t know exactly how, but love and determination are the main reasons as to why. Both are powerful forces to be reckoned with and have been essential. I also made a conscious decision to persist, despite the obstacles and setbacks, which have been many along the way. Sometimes things have not worked out the way I hoped for Brian, but when looking back on the situation at a later time, it actually worked out for the best and there was always a lesson to be learned, if I was willing and open to receive it.

A survivor is defined as “ a person who copes well with difficulties in their life”. There are many types of survivors: perhaps you also wear another “survivor hat”, besides one for special needs parenting. Special needs parents automatically become survivors from the moment their disabled children are born. We really don’t have a choice if we are to endure this life long marathon with our kids. In the early years, when we were younger and our kids were smaller, our endurance was stronger. Now, I find the opposite to be true, yet Brian is developmentally still a toddler in many ways and always will be to a certain degree. You can imagine the incredible amounts of patience and time that are required for Brian to achieve the simplest of tasks. I don’t always cope well with these truths; you can be sure there are many mornings when I would prefer to hide under the bed covers. It’s hard to face a repetitive 14 hour day on a Saturday, for example, which is why my husband and I try to get Brian out in the community on weekends to do different things. Such outings are good for all of us mentally and physically, but require contingency planning and packing for all potential scenarios, because you have to be prepared for sudden changes when you have an autistic child. Yes, my husband and I are exhausted by sunset, but like Brian, we are ultimately resilient. It is our nightly prayer that we always remain so for our son’s sake..

Here’s what a typical Saturday looks like for us. Keep in mind that most of the following activities take several minutes to accomplish and require verbal/gestural prompting and hand-over-hand assistance. Brian needs physical assistance with all self care and activities of daily living.

Brian’s Saturday Schedule:

7:00am -8:00am- Wake up, bathroom, get cereal/juice, put dishes in dishwasher , brushing teeth, getting dressed

8:00am- 8:15am – socks, orthotics, and shoes are retrieved and put on

8:15am- 8:45am – make up the bed, put away laundry

8:45am- 9:15am -Brian watches TV

9:15am-10am- Exercise ( walking in the neighborhood or on the treadmill)

10am-10:30am- Snack/Bathroom break

10:30am- 11am- Put clean dishes away/ do laundry

11am- 11:30am- Read Books, aka, Mom or Dad read several books to Brian!

11:30am- 12:00- iPad break

12:00pm- 1:00pm- Lunch: make sandwich, retrieve drink, snacks, cleanup, bathroom

1pm- 5pm -Recreational activity in the community

5pm-6pm- set the table for dinner, watch TV

6pm- 7pm- Dinner time and cleanup

7pm- 8:30pm- Movie time

8:30pm- 9:15pm-book reading, prayers, bedtime routine

The aforementioned has been Brian’s weekend schedule for a long time. Prior to Covid 19, he had participated in special needs recreational activities on the weekends, but of course, these things have been put on hold for the time being. As a result, the weekends can feel endless if we don’t have plans in place. We have been most fortunate this Fall, as the beautiful weather has afforded us many opportunities to be out and about in various places. However, this will be coming to an end shortly as the weather gets colder and the days shorter. My husband and I will need to put our recreational thinking caps back on to come up with other things to do once it is too cold to be outside. Many special families are in the same boat and it is not easy. In fact, I’m dreading being indoors indefinitely, as Winter can seem to drag on forever. We will need to muster all of our strength and creativity in order to cope with what lies ahead, just like we always do, year after year. Yes, we are survivors indeed, despite the frustrations, repetition, and patience that is required for the special needs life. We are sometimes knocked down, but thankfully, not knocked out. We cope, we believe, and we achieve, despite our exhaustion, because our kids need so much! We adapt, in spite of those unbearable moments when I was ready to run away from home ( on more than one occasion). It is during these dark times that I am reminded that my son is a survivor too. He copes with endless challenges related to his disabilities every moment, of every day. Brian accepts his situation, doesn’t complain, and soldiers on. Never have I witnessed such incredible resilience, as I watch my son often painstakingly get through his obstacles. He keeps on keeping on- THIS is what ultimately inspires me to do the very same.

Special needs parenting can be a “just getting by” type of survivorship, (especially with difficulties and mundane things), but it can also be something that transforms our experience as parents for the better. We have fought the good fight with our kids and FINALLY they are able to achieve something that we never thought would happen! For example: Brian was a very late walker; he took his first independent steps (without hand holding) at 5 years old. I witnessed Brian taking his very first steps towards me when he got off his school bus one afternoon. I will never forget that incredible moment! It took a tremendous amount of effort via physical therapy, early intervention, preschool, medical appointments, and time for this milestone to finally happen. There had even been concern that Brian had a spinal issue which precluded him from walking, but thank goodness the neurosurgeon ruled out any abnormalities. My heart sang and my spirit was transformed by this major event! It was the beginning of deeply appreciating every one of Brian’s future achievements, big or small, for I knew just how hard and long it took for him to take that first independent step.

The feeling of gratitude and joy for each of our children’s successes can be an incredible experience. We know exactly what our kids go through; we also know the struggle is real for them, as much as it is for us. Nothing comes easy for disabled children; they have to work very hard for everything that they achieve. It is unfair for sure, but it’s an opportunity to also see how time, practice, patience, and love can positively impact how our children learn and progress, each in their own way and time, according to their individual abilities and interests. It is so exciting to witness that magical moment of achievement, when FINALLY all the months/years of persistence have payed off! We have survived the ordeal and the reward is so worth it, each and every time!

Yes, indeed, we are not only Survivors of the Special Needs Journey, but we are also: Problem- Solvers, Advocates, Cheerleaders, Recreation Directors, Speech, Occupational and Physical Therapists, IEP Specialists, Medical Specialists, Life Skill Teachers, and Vocational Educators. Who knew we would have to be so versatile, that so much would be expected? Despite ourselves, we’ve learned a lot and have become quite proficient in these various roles, mostly by necessity. As long as these things help our child, the effort is always worth it, but the longing for simpler times will always remain. At the end of the day, I really just want to be Brian’s Mom, but I know deep down that Brian’s ultimate success in life is directly related to my willingness to take on these additional roles that will help him to achieve this goal. I am willing, but my flesh is often weak, so survivorship becomes paramount for the long, intense haul. I draw strength mostly from other special parent survivors, especially those who go before me with older disabled children, learning constantly from their acquired wisdom and years of experience. Their honesty is refreshing, the situations they and their children endure are often overwhelming, but there is also hope, a deep love, and a resilience that is also inspiring. We are truly all in this together!

Wishing you, my Special Needs Soul Survivor, all the strength, love, and grace that you will need for this life long journey with your son or daughter. Your child has taught you over and over again just how incredibly strong and passionate you are about EVERYTHING that has to do with them, even when you don’t feel that way. Somehow you continue to cope and forge ahead with great courage , especially when the odds are against you and your child’s disabilities are just too much to bear. You may lose battles, but you will NEVER lose the war. You may temporarily give up- you are only human after all… But inevitably, you pick yourself back up and keep on keeping on for your child, because that’s what Mama and Papa bears do. Now THAT is true love!❤️❤️❤️

Until next time, thanks for reading! 😊

10 Personal Truths About Down syndrome and autism

Having a child with a dual diagnosis of Down syndrome and autism is something I could have never imagined before having Brian. If you told me years ago that one day I would have a son with these complex conditions, I would have said you’re crazy and that it would never happen. In my perfect world, I only knew typical, healthy children, even though my undergraduate degree from college was in special education. Ironically, I had volunteered with, babysat, taught, and was a camp counselor for children with disabilities starting at the age of 14. During this time, I was able to separate my work life from my personal life. Never in my wildest dreams did I ever imagine actually parenting a disabled child, for that was for other people, I only chose to work with this population and fully expected to live my own life the way I wanted to.

We may make our life plans, but sometimes, God has different plans altogether for us. These plans may not be what we had hoped for or wanted, in fact, that was definitely how I felt about Brian’s disabilities , especially in the early years. I was angry back then and asked God “why?!” I had already worked with disabled children, wasn’t that enough?! Why did you allow this to happen? How am I going to do this? You ask too much of me! For a long time, I was scared, angry, isolated, and a victim. I would go through the motions of motherhood and made sure that all of Brian’s needs were met, but in my heart I was often bitter about my lot in life and resentful to be a member of a club that I wanted no part of. It would take another life-altering event to finally wake me up. I had finally come to the end of myself.

When I was diagnosed with colon cancer in 2009, I came to grips with my own mortality for the first time and had the realization that my 6 year old son could possibly lose his Mom if surgery and chemo were not ultimately successful. Finally, I woke up and grew up at the same time. Many precious times with Brian that I took for granted up until that moment suddenly meant everything to me. My focus and heart shifted to where they needed to be: being fully present with Brian and kicking cancer to the curb with all of my determination and strength. God gave me the grace to endure the whole ordeal; there was no other way to get through it. I was also blessed with incredible doctors, nurses, family, and friends, my angels from Heaven, who supported me and loved me through this journey until the last CAT scan at Year 5, when I was officially declared “cured”.

It’s hard to describe just how incredible it is to hear such wonderful news! All of the treatment, side effects, and waiting for test results made this moment especially poignant. My heart and spirit had also been cured of a resentment and bitterness, replaced with a compassion and a new appreciation for my life. Because of cancer, I became a new creation with a renewed purpose and appreciation for what I DID have, despite the illness, as well as the disappointments, difficulties, and heartaches in raising a disabled son. For the first time, my perspective was that of a “ half glass full” versus a “half glass empty” mentality. I can’t tell you the numerous times when this line of thinking has come in very handy. In fact, I can’t imagine going through life’s challenges without CHOOSING a positive attitude. It’s definitely not an automatic choice, in fact, I often have to work at it, but the alternative is no longer appealing. I will do anything now to maintain joy and peace of mind, despite the difficulties, and have found that it is truly possible when you trust God with everything in your life and give your problems over to Him, every moment, of every day..

As a result of this eventful life that I lead, I have become quite the student of Brian over the years and can say that I have earned a PhD in Brianology! This doctoral distinction gives me special credentials as Brian’s Mom, knowing him better than anyone else, yet, because of his dual diagnosis, he is still a mystery to me, a new territory that is yet to be explored. It’s the curious dichotomy of being with someone all the time, yet you don’t know everything about them. My detective and observational skills have been heightened/sharpened since Brian’s arrival into the world, yet over 17 years later, I am still learning and being surprised by my handsome, complex son. Down syndrome and autism profoundly effect the way my son communicates, thinks, and learns , so it takes a lot of people, effort, and time for progress to ultimately occur, but it does! I have had to adjust my preconceived notions of what progress means from Brian’s perspective. It has taken me time and many lessons, but I think I’m finally starting to get the hang of it! Down syndrome and autism have a lot to teach when one is willing and ready to learn the inevitable lessons that will follow. Here are the truths I have personally learned so far about Down syndrome and autism:

1. Down syndrome and autism can be heartbreaking and a mystery. No matter what I do or try, sometimes there is no solution for the challenge at hand and I must accept that and move forward.

2. Down syndrome and autism makes you extremely grateful for your own abilities and reminds you never to take little things for granted .

3. Down syndrome and autism would have been akin to a death sentence a few decades ago for those afflicted and their families, but individuals with the dual diagnosis can lead full, meaningful lives with the proper supports, resources, and life experiences. Brian is living proof! 😊

4. Down syndrome and autism cause me great concern about Brian’s future as an adult, so I try to plan ahead as best I can, yet still live in the present moment. It’s not always easy and sometimes becomes harder as Brian gets older.

5. My son’s Down syndrome and autism is not the same as your son’s dual diagnosis. Each of our children are both unique in this regard, with certain similarities, but also with many differences.

6. Down syndrome and autism have made me: cry, laugh, feel depressed, hopeful, and resourceful. I never knew I could experience such a range of emotions, sometimes all together in one day!

7. Children who have Down syndrome and autism are very different than those children who have either Down syndrome or autism . Our kids fall somewhere in the “gray zone”; they are unique and are “differently-abled” in many more complex ways. I felt that I arrived in Beirut versus Holland once Brian was officially diagnosed with both disabilities at 30 months old.

8. Down syndrome and autism have been a burden , but Brian, especially, as well as my husband and myself, are determined to not let it have the upper hand in the way we live our lives, despite the hardships that it brings on all levels imaginable.

9. Down syndrome and autism have revealed an inner strength, advocating abilities, and a resolve that I never knew existed within myself. I am often a mess, but I am also a strong Mama Bear who only wants the best for her son and will do whatever it takes to help him live his best life.

10. Down syndrome and autism is a part of Brian, but it doesn’t define WHO he is, my beautiful, loving, resilient, quirky, and complex son. Despite the challenges and exhaustion, I have the privilege of raising one of God’s special children who loves, hugs, and laughs with all of his pure heart, my forever boy. How many 17 year olds freely give their parents genuine bear hugs and kisses? For these gifts, and so much more, I am forever grateful..❤️❤️❤️❤️

Until next time, thanks for reading! 😊