Let Freedom Ring!

Brian’s “virtual learning” for the regular school year has concluded, though there was nothing “regular” about these past 3 months at all. In fact, Brian was generally disinterested by this medium of learning and would communicate this quite often! He would attempt to turn off these Zoom sessions on multiple occasions and look away from the screen, as though to say “ I can’t see you”. On a few occasions, that is exactly what happened, when we were unable to connect with therapists and/or hear what they were saying, resulting in Brian getting up and going into another room. Technology can certainly have its limitations and I don’t blame Brian for his reaction. After several weeks, he was done with learning in a way that did not make any sense to him in most instances, and quite frankly, so was I.

There were also moments over the past 3 months when I was conflicted, riddled with guilt, as much as I was impatient and frustrated. I wanted Brian to glean something useful from these virtual sessions. I also had high hopes initially when I went through the huge manila packet of worksheets that came home in Brian’s backpack the last day of school in March. “ Maybe there will be some activities that we can do together”, I thought, as I perused the enclosed materials. By the time I reviewed the last pages of the packet, I realized that the chances of learning success for Brian with what was in front of me were slim to none. Yet, I didn’t want to have a negative attitude before we even got started. So, Brian and I gave it the “old college try” for a full 5 days. The result was minimal/ fleeting participation from Brian, (complete with his signature heavy sighs), while I did almost everything hand-over-hand with him. There were more verbal prompts then should have been allowed by law! We were more than done at that point.

Yet, I completely understand the rationale as to why the materials were sent home. School staff had to provide something quickly to students before the pandemic officially locked us all down in our homes. We’ve all seen worksheets before and have completed them ourselves as students, sometime during our educational experience. But for many special needs students, like Brian, they mean absolutely nothing and are a waste of time So, we continued to persevere in virtual learning, as I also wanted to support the school staff for all of their heroic efforts in trying to virtually teach a multitude of needs and abilities via group learning sessions and individual ones- what an impossible task! I have no doubt that the teachers and therapists were often as frustrated as parents and students were for both the same, as well as different reasons. All of us are trying to brave through this new, unchartered territory. While we certainly had some virtual successes, (much to my pleasant surprise), I have to say that overall the whole experience for us was a dismal failure. What remained were many days of frustrations, unmet IEP goals, and the uncertainty as to when our kids will finally go back to school. I am clearly unqualified to be Brian’s teacher, aide, and therapists all rolled into one person. It’s unrealistic anyway and quite candidly, being his Mom is more than enough for me.

Like many parents, I am looking for an endpoint, a deadline, as to when our children will finally go back to school. I was quite hopeful, like many, as we saw restrictions being lifted, more things opening up, less Covid hospitalizations, etc. A light at the end of such a challenging tunnel is always cause for great hope and propels us to “keep on, keeping on”. Our governor even announced last week that school districts could offer in person Summer school, virtual learning, or a hybrid of both. I see a light! This was beyond exciting and the information that many families were hoping to finally hear! Then less than a week later, this hopeful news of on-site learning ends up being a false alarm and unattainable after all. Permission was given, but not the proper guidelines/tools to make it happen, so back to virtual learning we go. Another epic failure that continues to marginalize the educational needs of most disabled students. Even worse, not one word has been said so far about going back to school in September or what the game plan is in order to make that happen. Even a “preliminary” plan would be better than no plan at all, which makes me wonder if that is indeed THE plan…

I understand that not everyone is comfortable in sending their children to school now, or even in the Fall and beyond. I also recognize that some hold different points of view regarding how the road to “Operation Back To School” should be implemented. Every family has unique needs, concerns, and ideas as to how this should happen, as it should be! However, each one of us should also have choices and the freedom to chose, as we see fit, the education of our disabled children, based on their unique needs. Virtual learning doesn’t work for the majority of disabled students, so onsite learning should also be offered as an option for those who wish to pursue it. Some private school programs are offering both virtual and onsite programs this Summer and I applaud them for leading the charge. Yes, this should be done carefully/ methodically. We can all agree that masks, hand-washing, social distancing, and taking temperatures are the right things to do. Yes, it will take time for students and staff alike to make things work and it won’t be easy at first. But, I believe that those schools which choose to proceed this Summer with hybrid programs will have a distinct advantage over those schools who wait until the Fall (or later). These schools will be able to see what is working or not, and continue to fine tune health protocols/procedures as they go along, according to their students specific needs, yet within the stated guidelines. These schools will be more prepared for the Fall, because of the extra time that they took over the Summer.

This surreal experience over the last 3 months should be an important lesson for all parents to make sure to keep a watchful eye on their disabled child’s educational rights, that they are never undermined, regardless of world circumstances or distractions. Our kids are really counting on us to always be that persistent voice that ensures their freedoms, educational and otherwise. It is a huge burden that comes with a heavy price, but a necessity for the rest of their lives. I wish it wasn’t so hard, particularly in times like these, and especially because it doesn’t have to be! There should never be only a “one size fits all” solution for any challenge, nor should only one choice be imposed upon everyone. In the case of special education, one way of teaching is not individualizing instruction according to need, it is the complete antithesis of it. This approach is a set up for failure of achievements every time.

Despite my frustrations, I try to remain positive, as is my nature. I am hopeful that with time, things will continue to get better on all fronts. Restrictions are being lifted, Summer is almost here, and our vacation at the beach starts next weekend, a respite Jim, Brian, and I desperately need and are looking forward to. My husband and I will continue to persevere on Brian’s behalf and hope that our educational leaders will do the right thing for the students entrusted to them, especially for the Fall and beyond…Can you hear it? The school bell is ringing and will not be silenced until the doors reopen for students. Let educational freedom ring for those who are ready to exercise this right on behalf of their special children. They are entitled to an appropriate education according to their individual needs and should have choices in accomplishing this aim. It is the right thing to do- anything less, is unacceptable.

On a final, more upbeat note, a very Happy Fathers Day to those wonderful Dads, Uncles, Nephews, Brothers, and Friends who mean everything to our children…❤️❤️❤️ You are a blessing and deserve huge accolades for all that you do, every day!

Until next time, thanks for reading! 😊

Hope Springs Eternal

Almost 8 weeks in home quarantine due to the coronavirus, and I finally hit my proverbial wall today. My body and mind are totally exhausted. I know that so many of you can relate! This new normal has effected all of us in profound ways that we never expected. While I did know that this inevitable energy drain would happen the longer the pandemic goes on, I didn’t think it would be so intense. I wish I could retreat to a sleep chamber and awake when this whole thing is over, but of course that is not an option. Our special children in particular are counting on us for so many things and the list is endless from sunrise to sunset. Never have I appreciated school staff more than this moment! I’ve had a lot of time to think about how amazing our educators are and all that they do for our kids. Boy, do I miss them! Despite my best efforts to replicate their lessons, I fall woefully short. Brian is not a virtual learner, though he is beginning to like seeing familiar faces and participating in music-oriented online activities. He is also participating in some of the therapy sessions, but otherwise he has no interest and it’s a real struggle for him. At the beginning of our home learning, I was concerned about not keeping up, but now, if we are able to eat 3 square meals, get showered/dressed, and take a daily walk, that is a good day. It’s amazing how priorities can change over time…

I have had to learn that I am not the equivalent of 10 school staff, despite my initial enthusiasm and delusion to think that I could be. I have also had to accept that every step of progress will have its own reward, whatever it is, and to focus on that. There will definitely be more “bad days”. Disrupted sleep, endless caretaking demands, lots of frustrations from being cooped up at home, will go on, but not forever, though it certainly feels that way right now. I have had a good cry or two (or three) during this unprecedented time, and despite feeling so sad/ frustrated at times over circumstances that I can’t control, I must confess that the tears have been cathartic in their own right. Letting out the frustrations/steam has been helpful, even though the circumstances haven’t changed.

We are very fortunate that our house is large enough for Jim, Brian, Mom, and I to “spread out” as we need to for privacy. As much as we are enjoying special time together, we also need moments to call our own. I covet those daily private times and can’t function without them now. The other day I took a long walk around the neighborhood by myself, something I had always done prior to the pandemic, but it had been several weeks since my last excursion. It felt like such a relief to be out alone in the fresh air with my own thoughts, not having to take care of anything or anyone, and to just BREATHE!! As the weather continues to warm up, I have promised myself that I will continue to take those solitary walks whenever possible, and they are, indeed, essential to both my mental and physical health. Everyone has to figure out ways and means to cope during this lockdown. And all of us need to experience hope to assure us that life will resume, even in a “new normal” way.

I experienced such hope, along with many fellow New Jerseyans, last weekend when our county parks reopened. Talk about kids in a candy store! All of us were giddy with excitement to leave the house ; Brian hadn’t been in a car in 7 weeks and literally bolted for the car door! We were fortunate enough to get a parking spot and thoroughly enjoyed Verona Park in all of its incredible Spring splendor. It was a wonderful afternoon of sights, fresh air, and a change of scenery at an ample social distance. I could envision the big smiles underneath people’s masks as we were walking along. Everyone was feeling grateful and normal, albeit for a few hours, with the hopes of repeating this sublime experience again. It is indeed my prayer, that slowly, but definitively, we will reopen and start to get on with our lives, for we can’t be in lockdown indefinitely. We need hope and tangible evidence that there is a future to look forward to outside of our homes. Going to the park last weekend was the first glimmer of hope that I believe many people needed to see!

There have definitely been valuable things that all of us have learned from the coronavirus, such as better hygienic practices. Wearing masks and keeping a social distance are also sound procedures, as we transition back to life outside our four walls. We can and should continue to do those things, as we start to reopen. Common sense should also remind us that elderly and medically fragile individuals should take extra precautions, while the rest of the healthy population proceeds back to work and eventually school, slowly, but surely. There are economic and other medical consequences from the coronavirus that our nation will be facing long after a vaccine for Covid 19 becomes available. It will definitely take time for Americans to recover from the fallout of this virus on so many levels. We will continue to need hope and resources for the times that are ahead, that is for sure!

Springtime in our backyard

In the meantime, today is a beautiful day in early May, with the signs of Spring all around us. The days are slowly becoming longer, warmer, and hopeful… I am dreaming of going to the beach this Summer, even at a social distance from other beach goers, and can smell the salt air of the ocean, see the waves crash on the shoreline, and feel my toes in the soft New Jersey sand. I can taste that smooth delicious custard ice cream, and can’t wait to have a big slice of pizza on the boardwalk. I bet you can envision these things too! Each day we are getting closer to Summer and things like this to look forward to… Our government hasn’t formally announced yet what will happen regarding the beaches, but I would like to think that they will open, in a “new normal way” of course, but at least they WILL open at some point , like other places will eventually as well. Life must go on! I know our children would also wholeheartedly agree and will be just as happy as we are when we can finally move forward with our lives again .

Until next time, thanks for reading! 😊

Don’t Lose Heart!

Sometimes beauty can come out of a very difficult situation if you are willing to look for it. This truth may not be apparent, though, especially in the middle of a pandemic. One is not necessarily inclined to believe that positive things can come out of a crisis. The coronavirus has certainly created a tremendous amount of hardship on so many levels for everyone. It’s still hard to fathom that life as we know it was turned on it’s head less than one month ago. Who knew that basic things like food shopping, or any kind of shopping for that matter, would have restrictions, procedures, and such long lines? Social distancing is a new term that we never heard of prior to March. Indefinite school closures, working remotely, and being together ALL the time is the new normal. All of it is unsettling at best and enough to drive us mentally crazy, especially with no end in sight at the moment. Our special children in particular, may be confused and anxious and most of us never envisioned home schooling our kids.

In our situation, virtual learning is not an option for Brian, as he learns best in the literal moment with actual people present. The one exception is a music class on YouTube that Brian’s teacher posted, which he loves to death! Homeschool for us consists of “learning as we go”, with Brian participating throughout the day in various activities of daily living and self care. We go for long walks in our neighborhood and sit outside on the deck. We read books, play games, watch shows/movies, and eat a lot! It’s a routine that works for us, at least for now, and I’m relieved that Brian is agreeable to it. Never has “one day at a time” been more meaningful than right now…

Another unexpected consequence of the coronavirus is everyone being home together. Under normal circumstances, we complain that we don’t have enough quality time with family due to the hectic pace of our lives. Now, the opposite is true. While we may never have such quality time with loved ones again, we also need personal space for ourselves and balance in the midst of this pandemic. It can be very hard to have moments of privacy and requires very intentional planning. We need to create routines of our own for our sanity and well being. Now more than ever, self care and safe spaces within our homes must be done for the long term if we are to endure. Looking for laughter in any form is my mission, along with meditation and prayer.. These “3 Amigos”, laughter, prayer, and meditation, hold the key to my mental and physical wellness. Without them, it would be impossible to go forward, especially while it’s still uncertain when we can resume our lives . Learning to let go of our traditional routines as we know them has been hardest of all. I’m sure that most of us will never take for granted again the most ordinary of freedoms, like outdooor mobility and shopping, once the coronavirus is behind us.

One of the silver linings of the coronavirus has been my Mom’s arrival to our home. She has been with us since last week and it’s where she needs to be. She is almost 89 years young and remarkably still lives on her own in the home where I grew up in. Our family home holds many precious family memories for Mom, especially those of my Dad. The current pandemic, however, has necessitated her relocation to our house.

All of us are adjusting pretty well to our “new normal”. Brian was initially confused by this transition, but he recovered quicker than I thought he would have. Mom’s presence has been absolutely wonderful for Brian, and he is her catharsis and “love bug”. They are sharing a special time together, creating memories, and sharing joy. It is a gift to witness and memories in the making that I will always cherish. I don’t take this for granted, even through those many moments of “cabin fever”. I remind myself when I feel moments of frustration that one day I will look back on this extended time spent together with Mom, Jim, and Brian with great fondness and appreciation, another silver lining of this unprecedented time in our lives.

I almost forgot that tomorrow is Easter Sunday, my favorite day of the year. Easter signifies Hope, Heaven, and Redemption. God has given us eternal life and His assurance that He will always be with us, even now through the coronavirus. It may not feel like it or seem so, especially with so much stress and uncertainty. In my personal experience, it’s exactly when God seems so silent or far away that He makes His love known. Perhaps it’s through a store clerk who offers to bring your full shopping cart to your car unsolicited , which happened to me this morning at Shop Rite. Or maybe it’s through the encouraging words of your neighbor during a social distance conversation. An unexpected phone call from an old friend or a card of encouragement also qualifies. And there are many more examples!

Life as we know it may not make sense or seems unfair right now, but we don’t walk alone and never will, especially in the difficult times. God’s Angels are all around us, doing amazing things to help us remain strong and get through this pandemic. We know them as the Heroes On The Front Lines, ie, healthcare workers, retail workers, etc. Our heroes may also be among us at home, providing us with the levity and sustenance to keep going. Hope during this very difficult time definitely requires faith, which is based on evidence that may not be apparent. But if you are willing to look within the imposed confines of our current world , chances are you will experience hope in the most unexpected ways. Remember, this pandemic WILL pass, we will get through this! Most likely you have been through many other challenges in your life, I know I have! With God’s loving grace, all things are possible!

Wishing you and your loved ones many moments of serendipity, laughter, and love, especially during this pandemic, because we need these things more than ever to cope! May we all be blessed by the angels put in our path and be a blessing to others as well ! Happy Easter! Until next time, thanks for reading. 😊

Coronavirus Survival 101

There is no doubt that the Coronavirus has dramatically changed life the way we know it, at least for the time being. Who would have ever guessed it’s profound effects around the globe? It’s hard to imagine right now how life was “normal” for Americans less than 2 weeks ago. There was no social distancing, remote learning, or supermarkets out of chicken. Being quarantined at home is not something any of us could have ever imagined and now it is our new reality that we must cope with. In many ways, this pandemic is proving to be quite challenging physically, emotionally, and mentally for many of us. We must manage, somehow, if we are to endure all that is required, especially if our current situation goes on indefinitely. The Coronavirus WILL eventually peak, decline, and cease at some point, but in the interim, how do we rise to the occasion on a daily basis until further notice? This is obviously a monumental task, especially with schools closed and our children being at home. Everyone thrives on a routine, particularly our special children, who for some, even a slight change in the schedule can cause a major disruption and result in difficult behaviors. It’s hard enough to handle such stress for even one day, let alone indefinitely, so what to do?

Unfortunately, there is no perfect answer, “one size fits all” solution. I can’t control the spread of the Coronavirus, as much as I would love to. But I can control my actions and reactions towards it, which can make all the difference mentally, physically, and emotionally. What choice do any of us really have otherwise? Anxiety, worry, and fear are quite normal during a time like this. I believe it is very important to acknowledge those feelings, yet, not remain paralyzed by them for too long. There will be additional “carnage” from the Coronavirus long after it leaves its destruction behind. There will be new cases of physical and mental illnesses, economic ruin for many, and more uncertainty. America, like the rest of the world, will have to recover and rebuild in many ways and in many areas over a long period of time . The thoughts of all these things is enough to drive anyone over the edge if you consider them for too long. In our own homes, we have our children to think about, first and foremost. They need us more than ever at this time to be healthy and strong for them.

The odds are stacked against us with so much going on in the world at large and also being stuck at home without the daily support of school staff. By the way, I have always respected teachers, but my admiration has increased a thousand-fold since school has closed! Although I do consider myself to know Brian better than anyone else, I also recognize my limitations as “teacher”, “home therapist”, physical, occupational, and speech therapist. Jack of all trades, master of none, definitely defines my abilities to a tee in each of these roles. I am learning daily to adjust my expectations, accept my limitations, and repeat the mantra: “ progress, not perfection”. Progress can mean making sure that Brian is fed, showered, and cared for each day. Progress is also making sure that my husband and I give each other space, work together as a team, and encourage one another. Progress is a successful shopping expedition for one package of chicken, a loaf of bread, and salad fixings for dinner that night. We keep expanding upon our meaning of “progress” as we go along and deliberately look for those opportunities daily, because it’s productive, positive, and keeps our minds engaged on things that we CAN control. We will feel better when we are productive and our perspective can improve when we are purposely looking for opportunities, whether a pandemic is going on or not. Ultimate progress for all of us, of course, is to remain healthy throughout this entire ordeal.

There are other considerations as well, despite the Coronavirus, such as the laundry, house cleaning, making meals, etc. These things must continue for our survival, but strangely enough, I find some solace in doing such mundane activities, probably because they are predictable and routine right now . It seems, though, like laundry has multiplied in our home since the Coronavirus, and there is only 3 of us! Other chores must also get done, so I have come to look at all of these necessities as “opportunities “ for Brian to practice “activities of daily living”, ( ADLs), and self help skills. These things are helping us to create a routine to our day which gives us a purpose and helps the time to pass. Brian’s teacher and therapists have done a fantastic job of providing educational/ therapeutic materials and continue to do so on a daily basis. The staff is checking in with us regularly and supporting our efforts at home. Initially, I was quite overwhelmed by the huge packet of educational resources that were sent home on the last day of school and daily “virtual blackboard learning”. At first, I felt guilty not being able to accomplish most of the “assignments” with Brian. Then I reminded myself that I have personal choices that I can make that will benefit Brian the most. Brian is not an “academic” and never will be. He is a vocational/ADL learner- plain and simple. So instead of driving myself crazy, I will extrapolate what I can from the available materials and apply them to learning when I can, as best as I can. For us, contextual learning works best, so for example, if we are eating breakfast, I can have Brian get his cereal bowl, pour out cereal, set the table, put dishes in the dishwasher afterwards, etc. All of the aforementioned steps work on ADL, occupational, physical, and speech skills simultaneously. There are many more “ natural” situations like this throughout the day, so as far as I am concerned, Brian is learning to practice a variety of skills that are specific to his educational plan in his natural environment, and that is good enough for me. Each day will vary as far as what gets done and how much is learned, but I have accepted this too, a very good choice for me as far as I am concerned.

Self -care continues to be paramount for all special needs parents, especially during this time of isolation. It will take time and consideration to come up with a “Self-Care Survival Plan”, but we are all worth that kind of investment! Just as important, is making sure to execute your plan daily. Here is a list of 10 “Self-Care Essentials” that have been helpful for me:

1. Maintaining daily communication with family and friends via email, phone calls, or texts.

2. Doing some form of exercise outside or in the house for 30 minutes

3. Putting headphones on and listening to favorite music

4. Reading for pleasure- no special needs materials allowed!

5. Putting plans in place for when the pandemic ends- something to look forward to!

6. Indulging in body lotions, perfumes, fragrant hair products, and long hot showers

7. Meditation and prayer for 30 minutes- hard to be still at first, but I am starting to make progress.

8. Phone A Friend- Calling one friend a day to connect and check-in

9. Writing in my journal- whatever comes to my mind, it has been quite interesting!

10. Indulging in one favorite food or beverage treat daily- now is not the time to deprive ourselves!

There have been many “silver linings” to the Coronavirus. These include a deeper appreciation of our health, family members, or the fact that we have a roof over our heads and food on the table, even though food shopping these days can be quite challenging. We don’t take as much for granted, we know things could always be worse, and most importantly, we know that this pandemic WILL pass. We are resilient and have been through much worse. Ten years ago, I was in the midst of chemotherapy for colon cancer , my husband had been unemployed for over a year, and Brian was having challenges at school. Those were extremely difficult times and it would take several more months until Jim found full-time employment and I physically and mentally recovered. Brian’s school situation eventually improved and we slowly, but surely, rebuilt our lives. It was very hard, but we got through with God’s help, faith, our family, friends, and the positive choices that we made. Many people have gone through similar adversities and came through stronger on the other side. I have no doubt that we will be get through this pandemic too, hard as it is, with determination and support from one another.

I wish you and your family Joy, despite these trying times, Hope, when it seems in short supply, Faith, in the good that is yet to come, and Love, especially right now, and always. Until we meet again, thanks for reading!😊

Did You Know?

Sometimes when people meet Brian for the first time, they will ask me after a short while whether I knew before Brian was born that he had Down syndrome. This question has actually been asked of me many times over the years. I understand a person’s curiosity on the subject and can envision what they must be thinking as they ask this question and why they are asking it in the first place. I’m sure for some, it’s hard to imagine not knowing such information ahead of time, while for others, it wouldn’t make a difference. I happen to fall into the latter category for very specific reasons.

For my husband and I, the outcome didn’t matter. We believe all life is sacred and a gift from God. While knowledge is certainly power, there is also a risk of a miscarriage with an amniocentesis. Any risk was too great for us to consider, especially since we thought that this would be our only opportunity to have a child of our own. Regardless, it would not have changed anything for us, except for having information ahead of time about Down syndrome. Ironically, this was the only time in my life that I did NOT want to know anything regarding Brian ahead of time. I wanted to focus strictly on my health and the health of the baby- anything more would have been too stressful. I didn’t want to impose unnecessary stress on an outcome that was already predetermined. There would be plenty of time after Brian’s arrival to read up on everything that Jim and I would need to know in order to care for him going forward. This ended up being the right decision for us and was exactly what happened. In the meantime, I wanted to remain positive and hopeful that we would have a healthy, typical baby. However, things didn’t go according to plan in the way that we had hoped during the pregnancy. In fact, it was quite the rollercoaster ride of ups and downs from almost the very beginning.

Brian was diagnosed with a fold in his neck called a nuchal fold translucency at 9 weeks old, followed by a hole in the center of his heart at 18 weeks old. I was then diagnosed with intrauterine growth restriction (IUGR) where Brian stopped growing at 7 months, followed by bedrest in the hospital for 5 weeks. Talk about eventful! I didn’t need an amniocentesis to tell me that Brian had Down syndrome, I already knew it in my heart and had plenty of time to consider it during my bospital stay. Yet, a part of me wanted to remain hopeful, perhaps there was still a chance that these anomalies were limited unto themselves and had nothing to do whatsoever with a developmental disability. So, I hoped, prayed, gained 25 lbs on bed rest, and went to Lamaze classes in the hospital to keep my mind occupied. I also knew deep down that a C-Section, (with LOTS of anesthesia), was in my future and this also happened. What I wasn’t prepared for was the overwhelming feeling of sadness, grief, and fear that followed, once Brian was born at 36 weeks and 5 lbs later. I couldn’t believe how tiny he was! There were oven-stuffer roasters twice his size! How would we ever care for this baby who would need so much in every way from the moment of his arrival and for the rest of his life?

Fast forward from Brian’s birth until now. Jim and I immediately became students of Brian and are still learning to this day. I didn’t know there was so much entailed in caring for a disabled child. I didn’t know how truly overwhelmed and exhausted I would feel. I didn’t know how much I could deeply love until Brian was born. I didn’t know that someone could depend on you so much and always will. I didn’t know that it was possible to care so deeply for a child so precious until I held Brian. I didn’t know the price it would cost, or the sacrifices that would need to be made in order to raise Brian and to care for him. I didn’t know how much I would cry and continue to do so when I see how my son has and will always struggle. I didn’t know that I would become a strong advocate for my son. I really didn’t know that there was such a thing as Down syndrome and autism together! I didn’t know that I could feel so depressed and hopeless, especially in the early months following the dual diagnosis. I didn’t know that I would meet some of the most incredible people because of Brian and his disabilities . And there is so much more that I don’t know… I am still learning and always will be, but there are also lessons that I have mastered, and things that I do know with all of my heart and being…

I do know that I am meant to be Brian’s Mom and Jim is meant to be his Dad. I also know that Brian is a blessing to all who meet him. I know that Brian has many purposes in this life, some apparent to me, others not yet revealed, but all for the good. I know that Brian will continue to make his mark on the world, in his own way, one day at a time. I know that Brian loves with all of his heart. I know that Brian will always struggle with his challenges. I know that Brian has built character in me in ways that were often very difficult, but ultimately for his good and mine. I know that Brian and I have a deep love for each other, a gift I am forever grateful for. I know I often get impatient and frustrated by Brian’s disabilities, but he is incredibly understanding and forgiving, despite my human flaws. I know that one day, I will no longer have the ability to care for Brian the way I do right now, and this scares me.. I know that despite this particular fear, (and many others), that God will always make a way for Brian, because He created him, loves him, and has a plan for him, even though the details of this plan are yet to be revealed. I know that my faith has always served me well throughout my entire life. I know that ultimately, all things will work together for the good.

While I did not know that Brian had Down syndrome in utero, there were many things since his birth that I have come to know and continue to learn, both willingly and unwillingly. This is the eventful life journey that we share with Brian: milestones, joys, a deep mutual love, heartaches and heartbreaks. This is not the life that I would have chosen for myself if I knew ahead of time what the implications of my choice would have meant. Yet, I can’t imagine my life without my son, despite everything that has happened.. This much I know with 1000% certainty and with all of my heart. ❤️❤️❤️❤️

Until next time, thanks for reading! 😊👍🏻

I

P

Talk To Me…

My husband and I come from a large extended family of gregarious talkers, so there is never a lack of conversation whenever all of us get together. Our gatherings are fun, often spirited, and memorable, with the time spent going much too quickly. It took Brian a long time to be comfortable with these extended family paloozas. Even today, Brian still needs his space to adapt to a family party, for walking into a crowded room is too overwhelming. It’s always better if we arrive first, greeting relatives as they enter, one at a time. The same holds true on our own home turf: Brian will find a comfortable space and prefers if you come to him. In the early years, we often had to leave various places due to the sensory overload of people and unfamiliar surroundings. Sounds and sights during that time were just too much for Brian to process. We would leave these events feeling sad and isolated, wondering if it would ever be possible to be our gregarious selves again or if it was our fate to remain contained within the walls of our home. I often thought it was an especially cruel blow for Brian that he could not speak and tell us what was on his mind, unlike the rest of us spirited conversationalists in the family.

I still wish I could hear my son speak, even today, and often dream about it vividly…..In my dreams, Brian and I have had these amazing conversations , covering various topics of interest. I am flabbergasted by Brian’s insights, his astute observations of people, places, and things. He has preferences, opinions, passions, and dislikes, and has no problem expressing them. He has hopes for today and tomorrow, as well as plans for his future. He loves his family, school, and community activities and assures me that everything is and will continue to be OK. He looks deeply into my eyes with a knowing stare and says: “You worry too much, Mom!” I agree: “Yes, Son, you are right. I try not to worry so much. I think most of the time I take things in my stride, but sometimes, I just get so overwhelmed. You go through a lot and at times I feel so helpless, as I can’t always make things better. That is so hard for a parent . That is the nature of motherhood and the price of love.” Brian gives me one of his reassuring, “death grip” hugs, then suddenly the dream is over, leaving me to wonder long afterwards if perhaps all of this really happened after all….

Anything is certainly possible, so maybe Brian will acquire more language over time. He does say “Mom” and “Dad” now, and this only happened in the past year. I can see Brian positioning his mouth, trying to the imitate sounds that we make. However, apraxia makes this goal very difficult; the disconnect between the brain and oral motor functions is like trying to climb a mountain without the proper gear. Still, I am hopeful of what we may hear Brian say one day in the future. The fact that he could finally utter two of the most important words in the world was a miracle. I am very realistic though, and don’t expect Brian to engage in a conversation, but some words here and there over time would be wonderful. It would especially come in handy when Brian is in distress or sick, like he has been this past week. We don’t always know at first what is bothering him and often have to go by body language and other signs to reach a conclusion or diagnosis. This can be frustrating for everyone concerned and adds to the angst and exhaustion that we all feel.

While we don’t always know what Brian is thinking, I am grateful that there are tools for non-verbal kids to express themselves with, such as Picture Exchange Communication (PECs), sign language, and various speech apps. Brian does use a speech app called “Proloquo “ on his iPad to communicate his wants and needs. There is no perfect system and each one has its pros and cons, but these resources do give us an insight as to what Brian is thinking about at times and have helped him to initiate “conversation”. It is our hope that Brian will continue to expand his vocabulary with Proloquo, and become more spontaneous in using it. Who knows, perhaps there will be new means of augmentative communication in the future that will increase both receptive and expressive language in a totally different way. You just never know and I like to remain hopeful of what could be, not only in communication, but in all facets of Brian’s life.

Being engaged with the community also involves communication, so in addition to an augmentative communication device, Brian also carries a Velcro wallet with a “student picture ID” card that lists his home address and my cell phone number. This tells people who Brian is and who to contact, should Brian ever get separated from us. I shudder to even entertain this thought, but things can and do unfortunately happen. Brian is learning to show his ID when asked his name, and is making food purchases at his school cafe with a few dollars each day. Brian also has a name badge that he will use starting next month at a local pizzeria where he will distribute take out menus to customers a few hours a week. My husband and I are excited for Brian to have opportunities like these to engage with others by any means of communication available that will accomplish this goal. I believe such experiences will expand Brian’s communication opportunities and hopefully encourages him to be more self -motivated with expressing himself over time, with LOTS of practice, of course!

I’m glad that Brian will always have different ways of communicating and engaging with others, otherwise his world would be a very lonely place. Regardless of these opportunities, I still look forward to the day when my dreams of conversing with Brian will come true, in all of their wonderful, extraordinary detail! We will have so much to talk about! I suppose that is exactly why eternity is necessary, because time restrictions won’t work for us. All of the unspoken words, or times that I wondered exactly what Brian was thinking or feeling will be revealed! How amazing that will be! I’m sure Brian’s first words will be: “See, Mom! I told you everything was going to be OK! Now can I play on my iPad?” 🤣🤣

Until next time, thanks for reading! 😊

O

What I Fear The Most..

I was recently going through some old pictures of Brian when he was a baby and was reminded once again how quickly time has flown, despite many agonizing moments along the way when the opposite was also true. I can’t believe that Brian will be turning 17 years old this Summer- how did that happen?! These precious photos tell me otherwise as I look at them. I remember so well the story that accompanied each one like it was yesterday, forever etched in my mind. A mother’s joy and sorrow all wrapped into one heart that will forever love her beautiful boy who will always be a blessing, and who is also vulnerable in the world. As Brian is getting older, so are Jim and I . Quite frankly, I’m in deep denial about turning 59 this year. In some ways, it doesn’t seem conceivable, though my body often reminds me these days that I am definitely not the spring chicken that I used to be. My energy level is not quite the same, and my wrinkles are reminders of my years of too much sun on the beach without sunscreen, though I would prefer to view each one as “wisdom stripes”, earned by years of life experiences.

As young as I would like to think that I am or remain in my mind, the reality is of course, we all grow older and will eventually die. It’s the inevitable part of the life cycle that each one of us will face. This harsh fact often stops me cold in my tracks and invokes a fear like no other: when Jim and I die, what will happen to Brian? It’s the unanswered question that keeps many special needs parents awake at night; I have woken up in a cold sweat on several occasions because of this nightmare that I have dreamt about while in a deep sleep. It permiates my thoughts and actions and is the driving force behind what and why I do as much as I can for Brian now while I am still alive. My husband often jokes that perhaps modern medicine will advance to the point where one day, all of our body parts that have worn out will be replaceable and we will become bionic people, living to a ripe old age. While anything is certainly possible, the reality is, Brian will most likely outlive us and this truth literally scares me to death.

Why am I so afraid? Brian will always require a tremendous amount of support in order for him to live a fulfilled/ productive life and there are no guarantees that such resources will be available to him in the future after Jim and I are gone. Writing these words pains me so much to consider, even for a second, but it is the stark truth. Brian’s disabilities are such that while he does make his progress, and will continue to learn throughout his life, he will always need permanent and consistent support. Brian will always require help with everything throughout his day, and when you break that down, it can literally be hundreds of steps that are necessary in order to accomplish a whole host of tasks. It truly is mind- boggling and overwhelming when you think about all the steps a person takes to complete an average day.

Adult programs and residential facilities for the disabled are slowly emerging, but the need is so great and there are no guarantees for the right placement . There will be many disabled young adults in the near future who will require supports of various kinds, but there aren’t enough options right now to accommodate everyone. This is exactly why graduation from special education programs at age 21 can be so frightening, with such an unknown future ahead for many graduates. I try not to think about this point too much, as Brian still has some time left in school, but am certainly aware that graduation day will come. I hope to have a game plan in place before that time if at all possible.

I often pray that Brian will pass on before Jim and I. That may sound morbid or strange to some people, but the reality is, no one will ever care for your child the way you do. I realize how absolutely devastating this would be and I would be forever heartbroken. Yet , when given the choice, this would still be my wish. No one will understand all the quirks, nuances, strategies and what your special child needs, the way you do. No one will ever love your child the way you do. I have no doubt that Brian will experience a sharp decline across the board if we die first. I see how dramatic little changes can effect Brian, let alone a major loss. So, for these reasons, and many more, that would be my preference if I had any say in the matter, which of course, I don’t. Yet, in the meantime, I will try my best to take care of myself so that I can live to be a bionic old lady and at least know that I am doing everything I can to be there for my son.

How do I prevent this fear of leaving Brian behind from consuming me altogether? The answer is doing my best and trusting God for the rest. This is not easy and requires a daily declaration of faith that does not come naturally- at all! It is often a painful struggle and a series of “why” questions or “ how”… I don’t have the answers at all and sometimes all I have are my tears and broken heart. Yet, I have also seen doors open unexpectedly, opportunities arise, or people, aka, “angels” who were heaven sent just at the right moment to help us help Brian.

There is no reason to think that miracles wouldn’t continue to occur throughout Brian’s lifetime. In fact, I expect to see many more along the way! In the meantime, a willingness to try, to explore, to risk- all of the things that we special parents already do on a daily basis to help our kids is what is most important . I know I am happiest when I am busy helping Brian live his best life; it makes me feel productive and also gets my mind off of my fears and other things that I can’t control.

Like Brian, I continue to trust daily that somehow, someway, his needs will be met, not only in this moment, but for all of his remaining earthly moments. This is true even when I don’t understand how it will be possible, even when it doesn’t make sense, and especially when there seems to be no hope. Hope is what gives me the courage to face the good, bad , and the ugly in Brian’s life and always will. Without hope and faith, life is just too hard to manage on my own terms. I am glad that I will never be alone on this eventful special needs journey, no matter what comes, and that makes all the difference!

Until next time… thanks for reading! 😊

One

My Teacher, My Son

We parents can never give up on our special children, for they will always count on us, but this charge comes at a huge price… Once upon a time, long before having Brian, I traveled to many places, lived in a foreign country, and had a lifestyle that afforded me many freedoms, that at the time I took for granted. I came and went as I pleased, being accountable to no one but myself. If I didn’t like a situation, whether it was a personal relationship, a job, or any life experience, I simply moved on. The world was my oyster back then, so I made sure that I lived my life to the fullest. It was a season in my life that I will always look back upon very fondly.

I have no regrets, in fact, I’m so glad that I took advantage of the opportunities that came my way back then; I saw places, met many interesting people, and worked in various capacities that taught me so much about business, education, myself, and what I was capable of and how much I needed to learn. Little did I know how much of a skill set I would need to acquire years later when Brian arrived into the world… my new vocation as a Mom would test me to the core in ways I could have never imagined..

If someone had told me back in my swinging single days that I would one day be a mother to child with severe disabilities, I would have said, ” no way, not me”. This didn’t happen to people that I knew. While I was certainly aware of disabled children and had worked with them in summer camps (and had also babysat a young woman with Down syndrome when I was 13 years old), I never thought I would have a disabled child of my own- this only happened to “other people”. There is a reason why the future is not revealed to us and then there is also ” our plans” versus God’s plans. Little did I know how much my world would be rocked when I slowly realized that I actually was one of “those” people who I never wanted to be, especially in the beginning when Brian was first born.

It was very painful in those early days and all of my fear and selfish, self-centered impulses rose to the surface. I felt like a victim: it wasn’t fair to have a baby with so many challenges that would last for a lifetime. I was overwhelmed, defeated, and exhausted. There was no doubt that post-partum depression was playing a significant role at the time, as well as incredible, suffocating fear. I felt angry and guilty at the same time, but of course my beautiful baby boy didn’t ask for any of his many challenges either. Yet , even at a very early age, Brian showed incredible resilience and grace under fire and continues to do so today. Everything medically, sensory-wise, developmentally, that Brian has and will continue to go through for the rest of his life has been handled by him like a champ. Yes, it is very hard for him sometimes and he will make his displeasure known, but Brian also knows how to move forward and get on with his life in his inevitable joyful way. He doesn’t hold a grudge, nor does he act like a victim, and he never will. These things are not a part of who he is; his spirit and soul is and always will be pure and good.

Brian has been my teacher, as much as I have been his Mom, and for that, I am truly grateful. Brian has taught me extraordinary things about patience, grace, and resilience more than anyone I have ever known, mostly by the way he lives his life. I have not always wanted to learn these valuable lessons, and there are definitely still many days when I become frustrated and feel burdened by the weight of Brian’s disabilities. I also still get whimsical about my single days during some of these difficult times for sure, yet…..I can’t imagine my life without my beloved son, despite the hardships, the pain, and the fear. For with every challenge that Brian presents, there has always been an accompanying gift, one has never existed without the other. My parenting experience has been rich, bittersweet, painful, joyful, frustrating, and really just the most wonderful experience of my life. It’s incredible that such a dichotomy can exist, but it really does for me!

I have met terrific people and experienced a deep love that I never knew I was capable of giving because of my son. Brian has taught me great compassion for him, myself, and others. He has also taught me humor, appreciation, celebration, and a joy in all things great and small. Brian has also given me his perspective on what is truly important in this life and how not to sweat the small stuff. Brian has allowed me to make my mistakes; he has seen me fall down, broken and bruised, but offers his unconditional love and death grip hugs like no one else. Finally, Brian continues to model perseverance and endurance daily, just like a soldier off to the battlefield with an amazing grace. His life is not easy, but it has rich meaning and purpose that he has come to love and enjoys. This is EVERYTHING to a parent, for in the end, we just want our children to be happy and healthy.

Raising a disabled child is definitely not for the faint hearted and it is truly a marathon for life. It’s a huge weight, responsibility, and an overwhelming thought, so I tend not to dwell on it too much, but am certainly aware of the implications. These days I’m traveling more around town than around the globe; life has definitely become much simpler, yet simultaneously complicated. My husband and I know that many more challenging days are ahead, but there are also many good moments to look forward to as well. We choose to eventually accept the harder times, for in doing so we become stronger. There have been many wonderful moments with Brian as well as harrowing ones. Both good and bad days have taught us perspective, endurance , appreciation, and hope- all because of the love of a beautiful boy who brought out the best in us and helped his Mom to finally grow up. ❤️❤️❤️

Until next time, thanks for reading, 😊

A Daily Resolution I Can Keep

One of the things we did over the holiday break to keep Brian busy was to walk around some of the local ( and not so local) shopping malls. In recent years, Brian has learned to really enjoy going on these excursions. It’s not for the shopping, rather, he loves to engage with fellow shoppers with friendly greetings. Specifically, Brian likes to wave at others and in many instances, go up and shake hands. In the past, Brian would attempt to hug instead of handshake, often to the surprise and sometimes to the chagrin of the surprised shopper. Teaching more appropriate social behavior in public took time and lots of practice, but eventually Brian learned to limit his legendary hugs to family members and friends only.

Handshaking with strangers is an entirely different matter. We are trying to help Brian replace handshaking with hand waving, but similar to the hugs of the past, this is also taking time. Eventually, Brian will get there, but we are certainly in transition at the moment. Case in point, during our 4th shopping mall excursion on New Years Day, Brian kept walking up to strangers to shake their hands, while I was trying to redirect him. Most people were obliging and very nice, but understandably, there were those who did not appreciate my son invading their personal space. It was during such moments that Brian would become frustrated and my heart felt sad for my son. How do you explain necessary social graces to a sweet soul who is so pure of heart? It is this same exact vulnerability that also makes me so afraid for Brian’s safety, a lifelong concern that all special needs families share regarding their children.

I admit I was quite weary by New Year’s Day. It was Day 12 of the holiday break. We kept Brian as busy as we could during the vacation, but I was counting the hours until the school bus would come the next morning. My patience was starting to wear thin after a while, as I attempted to redirect Brian from shaking hands with everyone at the shopping mall. It was part comical, part crazy, yet, I could see the genuine joy and energy boost that each acknowledgement from a shopper gave Brian. He really loved the interactions and his joy was palpable. I could also see that the feeling was mutual for most people. Brian received many accolades from ” Hi Buddy” to “Is your son running for Mayor?” to ” high fives” and genuine smiles. One woman had tears in her eyes when Brian came up to her to shake her hand. She told me that encountering his beautiful spirit was the best moment of her day and wished us well. That was powerful and made me think of how our interactions with others can make a genuine impact for better or for worse. It also made me think about New Years resolutions in 2020 and what I can actually resolve to do more of.

Traditional self-improvement resolutions have never worked for me, as I historically give up within a few weeks of making them. In the end it’s not meaningful enough , hence, why I’m not motivated to stick with whatever I determined to give up in the first place. Perhaps my thinking on resolutions has been wrong all along: rather then focus on what I should deny myself of, how about making a conscious decision to give myself and others daily kindness? Simple, random acts of kindness that come from the heart do make a difference for both the giver and receiver. It costs nothing but your willingness and everyone benefits. Kindness can take many shapes and forms and can transform the minds and hearts of those it touches. Daily acts of kindness can be anything from a surprise note, phone call, or text, to sharing of resources, time, or your listening ear. Or as Brian does so well: extending a smile and a hand in kindness with a genuine joy in the world of the walking wounded. Each one of us will experience hardships in life that have the capacity to derail and disarm our joy, but a true kindness will always renew our strength to forge ahead.

One random act of kindness per day translates into 365 acts of kindness per person,per year- can you imagine how many more with determined resolve? The ripple effect would be phenomenal and so meaningful, much more than never eating chocolate again, which I certainly can’t do anyway. But I can resolve to do at least one act of kindness per day, simple or extraordinary, because it’s the right thing to do. I want to make a difference for the better, just like Brian does so well, with one smile, wave, and often one handshake, at a time..

Happy 2020! May your new year be filled to the brim with random acts of kindness, both given and received. Until we meet again, thanks for reading!

My Favorite Gift

While rushing out the door to attend Brian’s holiday party at his school today, the contents of my purse fell all over the kitchen floor. Tis the season to be grumpy- especially when you’re running late, so I threw everything back in the purse and continued on my way. It’s been one of those unusually fast-paced weeks, starting with a medical visit for Brian in Baltimore, plus the regular shopping, cooking, cleaning, never-ending laundry, and holiday preparations. Like so many others during this time of year, I’m already tired, feeling some stress, and it’s not even Christmas yet! Not to mention the 12 day break that Brian will have after tomorrow…

Holiday breaks are both a blessing and a curse for many special needs families: it’s great to be together with loved ones, but so many of our kids struggle without a set routine, so that means the parents struggle too. Yet, the school staff of course need a break and deservedly so. I’ve decided this year to really take one day at a time and try to plan “an activity of the day” for Brian, while simultaneously pacing myself. This is no easy feat, as I’m inclined to be on the go more often than not. However, I’m starting to really feel the physical toll of caretaking this year for the first time. I’m actually surprised that I’ve been able to maintain a good pace with Brian for 16 years without issue, but things have changed and I need to follow the cues of what my body is telling me. It won’t be easy, for most mothers suffer from guilt from time to time for not doing enough for their kids- I certainly feel that way! But a reminder from my wallet while reorganizing my purse early this evening, put my priorities back in their proper perspective..

It is exactly 10 years ago this week, that I was halfway through my chemo infusions for colon cancer. I remember my oncologist wanted to make sure I had treatment the week before Christmas so that I could enjoy the holiday and actually eat all of the delectables. My medical card from Memorial Sloan Kettering Cancer Center that fell out of my wallet today, was my “ticket ” to colon surgery, chemo, bloodwork, and MRIs. This special card entitled me to everything that was necessary for my cancer survivorship, and for that, I am eternally grateful. Colon cancer taught me many lessons, especially those regarding self-care, for my life literally depended on it a decade ago. I continue to enjoy the privilege of cancer survivorship 10 years later, but, there is still a huge responsibility that goes along with that gift. It is critical for me not to squander time, waste energy, or guilt, when it does my mind, and especially my body that went through so much, absolutely no good. I still wear my “Purple Heart” through the neuropathies in my toes and finger tips, permanent nerve damage caused by one of the chemo drugs and activated by very cold temperatures.

All cancer survivors have special momentos that they will forever carry on their bodies, minds, and hearts from their treatment experience, forever changing them in ways they never expected.. That was certainly the case for me: scars from surgery, effects from chemo, and certain food aversions were just some of the physical effects. Mentally, I was broken for a while, but with treatment, time, and love from family and friends, I was able to rise like a phoenix from the roaring fire. My body became stronger and so did my faith in God, whose grace ultimately got me through the ordeal.

You really know when life has returned to normal when you start complaining about the ordinary things that used to annoy you before cancer. That certainly happened to me and continues to on a regular basis, case in point, dropping my purse today, and just this week in general. It’s a blessing to have ordinary aggravations again, not life or death concerns, such as wondering in December 2009 whether the chemo would work and if I was going to make it.. I realize how lucky I am to have the gift of life, over a decade after cancer diagnosis -it is my favorite gift! I have been able to be with my husband, raise our son, and watch him grow up to be a sweet soul- for this, I am most grateful. During treatment, I was so afraid that I would not be here for Brian; he was only 6 years old at the time. I’m so relieved that it is all behind me now.

I don’t know what the future holds, but I do know that while living my life in the here and now, it is meant to be lived in all of its ordinary, messy, frustrating, and wonderful ways. Ordinary has taken on a whole new meaning in a good way for me. I am grateful for today’s reminder of my membership once upon a time in a club that no one ever wants to be a part of. I was given my life and the opportunity to live it with more appreciation and meaning. I continue to try to do just that and this gift will always be my favorite, especially at Christmas.

Until next time, thanks for reading! 😊