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 or 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