Brian’s Daily Christmas

It happens every holiday season: the annual hustle and bustle of cleaning, cooking, and shopping. The “don’t make so much food”, “let’s not buy so many gifts”, or my personal favorite: “I’m not mailing any Christmas cards”. My husband was teasing me just the other day when I said that this year I would not be sending any cards. “Yes, you will- you always do, who are you kidding?”. He was right- the very next day I placed an order that should arrive very shortly. I really do love giving Christmas cards as much as receiving them, but always find at the beginning of the holiday season that I need a “jump start” to get in the mood. At the end of the day, Christmas is all about faith, family, and friends, sharing delectable food and gifts. We look forward to being with those close to us, but gift giving for Brian is another story altogether.

In our home, Christmas presents, or any present for that matter, mean absolutely nothing to Brian. It’s hard to believe that this is still true, even today. I thought that Brian just needed some extra time, opportunity, exposure, etc. Over the years, Santa bought a variety of toys that we thought Brian would like, but he ultimately had no interest in any of them. This was very painful to watch, for every parent takes delight in giving gifts to their children, hearing squeals of delight, and seeing their joy. Brian, on the other hand, would get upset, scream, and throw his presents on the floor, It was hard for Jim and I to understand at first and Brian’s reaction was certainly the antithesis of how both of us felt about Christmas presents. This is one of the many ways in which autism is cruel and an unwanted guest- especially at Christmas. So, we had to learn over time to accept and to discover what Brian was really trying to tell us. ..

I admit, I am sometimes a slow, but always hopeful, student of my son when it comes to many things. But I’m happy to report that in this particular instance, I finally understand…It was just last week when my husband said “Every day is like Christmas for Brian” when we were discussing his recreational activities, camps, vacation, etc. I hadn’t really looked at it quite that way before, but Jim was right. These “Christmas gifts” are made possible by the collective efforts of an entire village. They are what make Brian really happy, as giving a toy on Christmas Day would be for another child. Despite, the initial adjustment to new people, places, and things, Brian learns that “new gifts” are not so scary and can actually be quite fun! There is the joy that follows, at least for the most part. Not every experience has been a positive one, of course, but fortunately these less desirable experiences have been infrequent.

Brian loves the company of others, which I believe, is his favorite Christmas gift of all. Our extended family, Brian’s school family, and social/recreational family,- each member has brought significant meaning to Brian’s life, and to our lives as well. Brian also loves to go out, and will hand me my car keys when I announce we are going to a particular place. Once upon a time, not so long ago, there was a little boy who hated to explore new venues and would scream in the car whenever we came to a red light. While Brian is still not a huge fan of New Jersey traffic (I’m with him on that one!), he can tolerate the stop and go of the road when he knows and trusts that the destination will be worth it. This is absolute heaven now compared to the hell that we thought we would never get out of in those early years. To say how relieved we are that those days are behind us would be an understatement- a huge Christmas gift for us for sure that continues to give all year round!

We will soon celebrate Christmas once again, embracing all that it has to offer with family and friends. And I have decided to let Brian try opening a few presents again! I know what you’re thinking- yes, maybe that won’t be a good idea, but maybe this year, it will be different. I have my theory how some small musical instruments may be just the game-changer that Brian needs, especially with his love for music. Regardless of what ultimately happens, Brian will continue to celebrate Christmas daily in his own way, with the people, places, and things in his life that mean more to him than a truckload of toys. There is a peace in this for him, and therefore, for us as well, and for that, Jim and I are extremely grateful. Peace is definitely an underrated and invaluable Christmas gift!

Wishing you the gifts of peace and hope during this blessed holiday season and beyond! Until next time, thanks for reading! πŸ˜ŠπŸŽ„πŸŽ„

Happiness Is A Choice

Amazon has changed the world in immeasurable ways, most of which are positive, and certainly keep me coming back to order things ! I love having an Amazon Prime membership for many reasons: free shipping, virtually any item you want is available, ordering from home, and most recently for me, free Amazon videos. I am amazed at the volume and diversity of programs that are available for viewing and had the opportunity to watch several during the Thanksgiving holiday. One particular show called “Happy” definitely grabbed my full attention and I highly recommend it. I believe it will be the best 80 minutes out of your day that you will spend.

“Happy” is a journey around the world to discover what really makes people happy with themselves and their lives. Individuals from all walks of life and various places are interviewed. Research scientists also provide their professional findings on the subject. You may be surprised by some of the outcomes that are discussed. For example, researchers have determined that 50% of a person’s happiness is genetically predetermined, an additional 10% is based on circumstances, while the remaining 40% is based on personal choice. I never thought of happiness as being ” measurable”, but in this particular context, based on how the information was presented, it made a lot of sense to me. Being able to directly impact my level of happiness almost half of the time is pretty powerful. It is just a matter of making intentional choices, which over time, can become second nature, and can even physically change your brain for the better. Who knew?!

I’ve been reflecting on this information, as well as the rest of “Happy”, and can see how beneficial and happy an intentional life can be when the right choices are made. Remarkably, this can even be true for people who are poor, (especially when compared to American standards) or for individuals who have experienced trauma or tremendous loss. Since all of us will go loss/trauma at some point in life, this is good news. For those of us who are parenting disabled children, this is especially encouraging, as our children’s traumas/losses, as well as our own, are often chronic and have the potential to make us very unhappy.

I was thinking about my own level of happiness in the context of being a special needs Mom. I have concluded that I am happy/content most of the time, despite the exhaustion, fear, and inability to solve Brian’s challenges-problems. There are many hurdles that Brian will always have to overcome in his life, challenges in my own life as well, things I have no control over, and this often makes me feel helpless. It can all be very scary and has the potential to keep me stuck in fear, but I don’t want to become immobilized, so I choose to focus on what I can change or improve, ESPECIALLY when I don’t feel like it. The key here: you have to be ready to receive and be in a place of brokenness for real change to happen. I was on my knees when this change took place in my life; there was no where else for me to go. There is truth that lasting growth can only happen out of intense pain, unfortunately there is no other way… but…the great news is, this pain can transform your life for the better, an amazing paradox indeed…

There are huge benefits when I choose intentionally for the better: perspective, contentment, and peace. Collectively, these 3 gifts equal true happiness for me, despite the daily challenges of raising Brian and an unknown future. Everyone can derive benefit from contentment, peace, and proper perspective, regardless of what life brings. Life is too short and I don’t want to miss out on the good moments because I’m still stuck in the bad ones. I deserve better than that and so do you!

It doesn’t mean that I don’t experience other emotions like frustration or anger. I most certainly do, just like everyone else. The difference lies in the perspective of the situation and how long I choose to remain in “the muck”. I can let the anger or frustration eat me alive or learn to let it go over time so that I can move on. I have experienced the former and can tell you it’s not a place where I wish to remain indefinitely. I have been robbed of time and joy during those dark moments when I have stayed too long in them. I have found that life can still be enjoyed and problems can even be forgotten about temporarily, when I am intentional with my choices. The reward is a change in mental perspective, even when the difficult circumstances remain. Simple moments are appreciated more, and an “attitude of gratitude” takes root. Plus as one good friend reminded me recently: ” nothing lasts forever” that includes both good and bad times. After a while, making good choices can become more automatic- that is the good news! It’s a very important part of my self care and when I see the positive effect of intentional choosing has on my life, I am even more motivated to keep it going. Finally, God’s grace is the “icing on the cake” that makes all things possible, especially the impossible!

Wishing you much joy and true happiness during this holiday season and beyond! Remember, you’re worth it, and so is living your best, imperfect life!

Until next time, thanks for reading. 😊

What I Wish(ed) For Brian

I always knew that I wanted to be a Mom as far back as I can remember. Even as a little girl, I wanted to have 5 children, all boys, by the time I was 30 years old. I have no idea why 5 kids or exclusively sons for that matter, but that was the vision that I had. Life had other plans, however, so that particular dream did not come true. I always loved children and ultimately became a special educator, ironically enough, after several years in the airline and pharmaceutical industries. I had many interesting work experiences, but my heart’s desire for marriage and a family did not come to fruition until I was 41 years old. I had been engaged a few times and had dated a ton, but it was still very difficult to find someone who shared similar values and goals. I have no regrets whatsoever in my decision to marry later in life; my husband, Jim, is my best friend, a good husband, and a great Dad. Like all marriages, we have most certainly had our share of ups and downs, yet remain solid together. I pray that is always the case: life is hard, sometimes unfair, always eventful, and requires a tremendous amount of fortitude and faith to get through a lot of it. Brian’s quick arrival into our lives especially made us very aware of these truths.

I had given up hope of having children of my own by the time I reached my late 30s, so you can imagine how surprised Jim and I were to discover that I was pregnant. As a matter of fact, we determined that Brian made his introduction sometime during our honeymoon in Hawaii. Life was about to change very dramatically for all of us 8 months later when Brian was born with Down syndrome. There was a lot of upheaval in those early months, so much to learn and adjust to on minimal sleep, as well as grief to process. Slowly, but surely, we adapted to our new normal, focusing on Brian’s health and resources that would enable him to thrive and survive. Brian came through his open heart surgery with flying colors; he was healthier and stronger than before. Brian had early intervention services in our home several days a week starting at 6 weeks old and eventually attended a center-based early intervention school for physical, occupational and speech therapies. We were hopeful for his continued progress in all areas and really depended upon a village in order to make this happen and still do today.

Interacting with typical children within our extended family and with other families made me very whimsical when Brian was about 15 months old. I really wanted him to have a sibling. I am one of 4 siblings and my husband is one of 5. Jim has 18 nieces and nephews and I have 5. Even though my siblings and I are not especially close, I still love my brother and sisters and know that they would be there for me if needed them and visa versa. I wanted Brian to have that experience of sharing with a sibling. I also envisioned another son or daughter overseeing Brian’s affairs, looking out for his best interests later on when we are gone. I really felt another child would be a good thing, but at 43 years old it was questionable, for many reasons. Yet, I had 2 friends who had recently given birth to healthy babies at 44 years old. I was in very good health, fit, and energetic enough. Despite a high risk pregnancy, the odds were not totally stacked against us. My husband was on board with the idea of expanding our family for the same reasons, so, we proceeded and became pregnant immediately again.

This pregnancy started off exactly like the last one. I had “night” sickness, was very tired, but definitely eating for 2. Each doctor visit was unremarkable. Brian and I napped at the same time, which was perfect. Jim was a huge help with Brian after work and on the weekends. Everything was going like clockwork, until one Sunday morning while I was visiting my sister, I noticed there was a little blood or spotting when I used the bathroom. The very same had happened during the first pregnancy, so I wasn’t overly concerned. I was feeling fine and just as hungry as ever. Then the cramping started around dinner time- more blood loss, anxiety, fear, and a visit to the emergency room. Monitors were hooked up, and an ultrasound was performed in the antenatal testing unit in the hospital- there was no heartbeat. You could hear a pin drop in the room it was so silent. There would be no sibling after all. I had a miscarriage at 10 weeks and was absolutely devastated.

I wish there had been another Mom to talk to afterwards, but I didn’t know anyone else who had had a miscarriage at the time. Jim was very sad too, but didn’t know what to say. So life just went on- it had to-as Brian was depending on us to carry on as usual. The loss would eventually be dealt with in counseling, but in the meantime, Brian had lots of needs and a diagnosis of autism one year later. In retrospect, one could say that it was just as well that we didn’t have another child because of Brian’s dual diagnosis. I suppose that is true, but that has never taken away the inevitable sadness that rolls around every October 21, the due date of the second baby. Time has been a healer, but there will always be that bittersweet remembrance of what could have been for Brian and for our family as a whole. I sometimes still wish that Brian had been afforded the opportunity to have had a sibling and wonder what that would have been like… I know Brian would have been an awesome ” big brother”. I have seen first-hand the special relationships that disabled children have with their typical siblings and am in awe. They often share a loving, strong bond and the typical sibling is generally patient, kind, and loving with their brother or sister, the traits that all parents wish for their children to possess.

Raising Brian has taught us over the years to be more practical with our wishes: realistic, yet optimistic, practical, but hopeful. What is the most important wish(es) at the end of the day? As hokey as it sounds, good health and happiness tie for first place. Without these two blessings, nothing else really matters, whether you are disabled or not. Although Brian can not speak, his actions, body language, hugs and smiles tell is that he is happy, at least most of the time, and thank God, healthy too. We know how quickly this could change and never take these things for granted. I know there are many parents who would give anything for their children to be happy and healthy right now. It is so heartbreaking as a parent when you can’t solve your child’s problems or make things better. We can’t solve Brian’s many challenges- they are numerous and lifelong and have been heartbreaking at times for us, but we continue to learn to change what we can and let go of the rest. Most importantly, we live just one day at a time, because that’s all we really have right now, in this very moment….

Until next time, thanks for reading! 😊

The Certainties Of Special Needs Parenting

Parenting has been one of the most rewarding and difficult experiences in my life, and, I wouldn’t trade it for anything! Being Brian’s Mom has given me an indescribable joy that is bar none on the life experience scale, yet it’s also been simultaneously exhausting and sometimes frightening. Jim and I will always remember when we first brought Brian home from the hospital, lying on our bed with this precious baby, both of us wondering aloud how exactly were we going to care for this adorable creature? He wasn’t discharged with a “How To Parent Brian” manual. We wanted to know and do everything right of course, so typical of first-time parents.

In those early days, most infants, special needs or not, are on an equal playing field as far as their care is concerned: feed, change, bathe, repeat. Brian was like that for sure, so the obvious differences between a typical baby and our son became apparent to us ever so slowly, but surely, with the difference in the developmental tracks becoming wider and more dramatic over time. As the developmental track widened, so did the full realization of Brian’s disabilities, and how they were here to stay. It has been quite the journey so far raising our son, with more adventures to come, no doubt! We have learned over the years that there are absolute certainties of special needs parenting that will occur, for better or for worse, and more often than not, it’s best to embrace each one wholeheartedly:

1. You Can Only Control Yourself

As much as we would like to control others, we simply can’t. It certainly would make our lives easier though, especially in a heated IEP meeting discussion, during a consultation with a doctor who doesn’t quite get our child, or the 10th phone call to a state agency for resources . The powers of persuasion and advocacy work much better, but these efforts take time, research, planning, energy, and so much PATIENCE . It’s our legacy as special needs parents and always will be.

2. The Highs Will Be Higher And The Lows Will Be Lower

I have found that raising Brian has often been an “extreme” experience, especially when it has come to the achievement of developmental milestones. Brian took first steps at 4 years old, said ” Mom” and “Dad” at 15 years old, and still needs assistance with all activities of daily living (and always will). Conversely, we appreciate literally EVERY step that Brian achieves and celebrate these moments like the grand prizes that they are. We know how hard Brian works at the attainment of any goal, and feel his struggles deeply ever step of the way.

3. It Will Always Take A Village

When you have a disabled child, you will always depend upon the assistance of others to help you. I am very grateful for “Brian’s People” and how they enrich his life, as well as ours. Like most special families, we have had our ups and downs over the years with less than stellar school placements, home therapists, or social activities for our kids. At the moment, we are in a very good place with a wonderful school/ bussing personnel, home therapists and recreational programming, but I realize this can and will change at some point. I know that I can also be as resistant to change as Brian is, especially when the status quo is working just fine. Support from other special parents has been such a gift and helps especially during the inevitable difficult times. One of the greatest blessings from Brian’s disabilities has been the friendships formed with others special parents, whom we would have never met otherwise.

4. You Must Take Breaks Lest You Go Insane

I love Brian with all of my heart, but I can become easily overwhelmed by his comprehensive care, to the point where I had previously neglected my own physical and mental health. I finally came to understand that if the Mother Ship goes down, I won’t be able to care for my son at all. This reality forced me to make a necessary mental shift. The first and most important priority is my own self care. Going back to Certainty #1- I can’t control anyone, but I can control myself, my choices, and my actions. I choose now to take care of myself while Brian is occupied so that I can take care of him, plain and simple. My self care takes many forms and may be just for a few hours or a few days when I’m able to arrange it, but the point is, I do something for myself that gives me a break and a respite. It is a necessity, not a luxury!

5. Your Child Will Bring Out Both The Best And Worst In You

I never realized how patient I was until Brian was born, yet simultaneously I get frustrated over so much of the repetition in our lives as a result of his disabilities. I’m grateful for his home therapy team, yet some days I don’t want anyone in the house. I’m glad that I am the Captain of Team Brian, but often wish the responsibilities weren’t so many and intense. I never knew I could multi-task so well on Brian’s behalf, resulting in his best life, but it has come at a personal price, hence, the importance of Certainty #4.

6. A Sense Of Humor Is Your Best Weapon Of Defense

There is no doubt that special needs parents need to arm themselves daily with a strong sense of humor in order to diffuse those challenging moments that our children inevitably create. I’m sure we parents could collectively write a book about such escapades and it would become a bestseller! Brian has certainly had his moments, like the time he threw his prescription glasses out the school bus window at highway speed. Or the time he decided to throw all of his shirts into the toilet and attempted to flush them. The best was when our neighbor rang the doorbell out of concern, as she saw flickering lights for several minutes from our first floor, when it was just Brian stimming on the light switches, so it wasn’t a SOS call after all. And on and on it goes- not necessarily funny at the time, but our kids do teach us how to eventually appreciate the humorous side of most situations.

7. You Will Always Have That Fear Of Leaving Your Child Behind

This fear is an absolute certainty, no matter how minimally or profoundly disabled your child is. You worry about what will happen to your son or daughter if you should die first and for good reason: no one will ever take care of your child the way you do. With improved modern medicine, it is very possible that our children will outlive us, though this is certainly not always the case. There is no way to fully reconcile this major concern, no way to control the outcome of what will actually happen and that’s very scary. In the meantime, we give our kids every opportunity to be independent, have them participate in overnight camps, school, respite, etc, with the hopes that they will glean skills along the way, get used to being with others, so that they are not exclusively attached to us. It is the ultimate faith walk, so I try to remember how faithful God has been in providing for Brian up until this moment with all of the resources that he needs, believing that this will continue, despite not knowing exactly how for the long term. Someone once shared with me: “I do not know what the future holds, but I know who holds my future”. I believe this and so does Brian, as he lives his life each day in total trust that his needs will be met. I can learn so much from my son about faith in action!

8. Your Priorities In Life Will Change

Our kids also have a way of changing our perspective on what is truly important in life, eliminating what isn’t, and teach us how to hold on to what is most important. Things like: kindness, compassion, understanding, patience, simple pleasures, belly laughs, deep hugs, and respect. Material things don’t matter as much, being together does! Time is too fleeting and precious to spend it with those who don’t want to understand you and your disabled child. Brian has reinstated that child-like wonder in our lives with his love for music, water, and board books. His joy and smile are contagious and he loves with his whole heart once he gets to know you. I’ve been told numerous times that Brian gives the best therapeutic hugs ever! Our kids do not not what it means to become jaded or to hate others, two blessings that would make our world a much better place.

9. Don’t Forget Your Daily Dose of SNM!

Last but not least, none of the aforementioned certainties can be fully realized or appreciated if you don’t attain the basics first: sleep, nutrition, and movement (SNM). I find quality sleep in particular is becoming more elusive as I get older, but I try to get to bed at a reasonable hour, eliminate all electronics at least an hour beforehand, etc. Sleep deprivation is the absolute worst and can deplete all coping skills. Disrupted sleep is quite common in special kids also, especially around adolescence, hence, why Brian takes medication for sleep, which has been a total God send and has saved me from losing my mind! Now regarding nutrition- I love junk food just like the next person, but definitely feel better when I eat less sugar, so I try not to have too many sweets in the house. Finally, incorporating some type of purposeful movement daily, whether at the gym, walking around the block, or even around the house, helps my joints, energy, and well being. I admit it can be a chore and I often lack motivation, but of course am glad when those FitBit steps have been accomplished, with my mind still intact! 🀣

Certainty #10 – Until We Meet Again 😊

Thanks for reading❀️❀️❀️

The Dance With My Dad

My Dad passed away in 2014 and not a day goes by since that I still don’t think about him. I miss him so much for numerous reasons, especially his wise counsel, which was always a constant in my life. Whenever I made mistakes or struggled with making decisions, Dad was the Voice of Reason. He was supportive of my choices, even if he didn’t always agree with them. Dad was never judgmental, but would certainly express his opinion with my best interests considered. A reserved man by nature, yet Dad could be the life of the party with his trademark sense of humor! Dad appreciated a good joke and loved teasing those he loved. My siblings and I share his sharp wit, especially my sisters. Apparently Nana Boyle, Dad’s Mom, had a great sense of humor that was legendary, so perhaps this is a hereditary trait . Everyone who met and knew my Dad would describe him as a gentle, funny soul, who made you feel at home being in his presence after only a short period of time. Now of course, he was not perfect and could conversely lose his temper in a New York minute. Raising 4 kids would certainly be cause for episodes of impatience and frustration, which most certainly happened in our family. Yet, as quickly as Tempest Dad arrived when provoked , Tranquil Dad almost immediately followed and never held a grudge. I was always amazed how Dad was able to switch gears in those moments and never look back.

I learned so much from my father about respect, honor, loyalty, devotion, and love. Dad was a devoted, loving husband to Mom and a great Dad to my sisters, brother, and I. I would like to think that I was “Daddy’s Girl”, as I am his namesake and look like him, ( and according to Mom, I could also be very stubborn like Dad too, lol), yet, the reality is, Dad loved my sisters, brother and I deeply, equally, and was aware of our individual needs and knew how to meet them. He loved us all for who we were unconditionally and wholeheartedly until the day he left for Heaven. I am so grateful for these gifts from my father and feel blessed that he and I had a close relationship, so there was no regret at the end of his earthly life or now.

Although Dad is no longer physically present, I am aware of his spirit and know that he is still with me. Sometimes it’s through nature, like the cardinal bird, or in a photo, or even through a song. Case in point, Brian and I were driving in the car this afternoon when the song ” Dance With My Father” by Luther Vandross came on the radio. It is one of the most beautiful ballads ever performed by a gifted singer. I bawled when I heard it, very unexpectedly, even surprising myself! Although I have heard this lovely song many times before, it was especially poignant for some reason today: a vision of Dad and I dancing at my wedding reception came immediately to mind. It was one of the most special moments of my life. I know Dad would say the exact same. It wasn’t just a dance between a father and daughter; to me, that precious moment in time represented a culmination of a lifetime of steps and turns that Dad and I had taken together. Through good and difficult times, Dad was present at every step and turn in my life, and continued to be, especially when Brian was born with Down syndrome. Brian’s arrival into our family created numerous unexpected steps and turns that often made our heads spin, particularly in the early days, when we were consumed with joy and grief simultaneously.

Dad absolutely adored Brian and called him his “wee man”. He loved to hold him, play with him, and speak to him. Dad and Mom were so supportive and helpful in watching Brian and picking him up from his special preschool a few days each week in the early years. Dad cried with me when Brian was later diagnosed with autism, a major twist and turn in the dance. He and Mom continued to show their support and love through Brian’s second diagnosis, despite the initial pain and loss they must have felt as grandparents. Over time, Brian would teach us all that there can be beauty in what appears to be ashes and with that, a profound love that our family is truly privileged to experience from a beautiful boy who loves us all with a pure heart. Dad continued to love and adore Brian as he grew older and instinctively understood his sensory challenges. Dad always gave Brian the space that he needed and gladly received hugs from Brian when he was able to give them. Now, Brian is so much more sociable- what a difference time and maturity can make in our kids lives! I wish Dad was here to experience Brian’s hugs today! Yet, I know one day they will be reunited, as we all will be, to unlimited hugs and so many more heavenly things! I look forward to that day and it is that hope which fuels my faith. Dad lived his life by faith as well, a wonderful gift that he shared with me that I am so grateful for.

There are still many days when I pick up the phone to call Dad to share a joke, or to ask his opinion about something, then realize right before I place the call that he is no longer here. It’s funny how that continues to happen, but perhaps it’s not a coincidence after all. I believe when these moments occur, Dad is reminding me that he is still with me, now and always, albeit temporarily separated by death. I believe that our time here on earth is just the “dress rehearsal”- we can only imagine what the “big show” is going to be like in Heaven, with our families and friends. I can’t wait to ask Dad for a dance when we are together again…

Thank you, Dad, for everything, I love you so..until we meet again 😘😘😘❀️❀️❀️…

Me, Myself, and I: I like us all!

We have all heard about the necessity of being your own best friend, having self-appreciation, and the importance of performing self-care. Even the Stuart Smalley character from the comedy show, “Saturday Night Live” stressed the importance of saying daily affirmations like: ” I’m good enough and I’m smart enough, and doggone it, people like me!” Not everyone will like us, and visa versa, but that’s OK. As long as we are alright with who we are and our place in the world, the rest are just details. We are the cake and our friends are the icing on it; it’s a major bonus when we have been fortunate enough to have been blessed with true friends, you know, the ones you can count on your one hand. But even with such a priceless gift, there will still be times when we will be on our own. Our special children are often the main reason for that. Illness, behaviors, our own exhaustion, and depression. Winter is just around the corner and with it, an extra layer of isolation, darkness, and sadness.

I know that I am effected by Seasonal Affect Disorder, ( SAD), or the ” winter blues”, usually peaking by the middle of February, when we are stuck at home due to illness, bitter cold, and snow. My self concept is negative. I don’t feel good or smart enough; I actually feel depressed and hopeless. It took me a long time to realize and understand the connection between mind and body, and what I was literally feeding my mind and body with, was not healthy. A bad habit of negative self-talk and junk food, created the perfect storm. Not replacing this self-imposed destruction with kinder options. I didn’t even realize at the time how deeply ingrained these bad habits really were and how much they were truly hurting me. Familiarity is always the safer way to go, change can be too scary and painful, until you are on your knees, desperate, which is exactly where I ended up. I have made changes slowly for the better over the years. I feel well most of the time and have changed my mental perspective to a healthier one by my choices and with prayer, once day at a time. But it will always be my Achilles heel, a constant work in progress. This self-awareness helps me now to better prepare for the return of my least favorite season, but instead of succumbing altogether to the depths of despair, I have learned to fight back. In the process, I have also learned how to actually enjoy being with me, myself, and I. A silver lining that has served me well year round.

It’s funny how you can feel alone in a crowd or not alone when you actually are. Or how about not feeling alone in a crowd or feeling alone and there is no one there. We have all felt all of the above, and I think these scenarios are particularly heightened with a special needs child. I have definitely felt alone, even when physically with other special families, but simultaneously quite content when by myself. I have also felt very connected and engaged with others when in a group setting, as well as quite lonely when home alone. Sometimes my reaction has to do with what’s going on with Brian that day; a challenging day tends to exacerbate the feelings of loneliness and isolation, even when in a crowd. A lack of sleep is also a major game changer. Or I might be internally triggered by a comment or something that I see. I try not to make comparisons, keep a positive attitude, and be objective. But we are all human and in the special needs world, parents are already profoundly affected by their child’s disability, in all ways imaginable, for better or for worse. It would stand to reason that our perceptions, reactions, and feelings to situations that involve our kids will be the same at times. I know mine have been. Yet, other times our opinions regarding our special children couldn’t be more polar opposite, even when discussing the same disabilities. Sometimes being in this particular position with other special parents is very uncomfortable and may cause us to shut down, lash out, or be misunderstood. It can happen to the best of us, regardless of our good intentions.

We special parents really need to give ourselves permission to “agree to disagree” with others, make mistakes, and to practice self- forgiveness, the very same forgiveness that we would hope to offer others. Eventually, we will disappoint our children, our families, our friends, and ourselves and certainly visa versa- this is a guarantee! It’s really hard to forgive sometimes and it’s a process that requires time and perspective. Interestingly, I have personally found that it is easier to forgive when I apply the same criteria to myself: I make many mistakes, but I’m still good enough. My foibles show just how human I really am, but it doesn’t define who I am. I know my strengths and weaknesses and have come to love them, even poking fun at my weaknesses! I believe wisdom is one of the gifts of middle age and I appreciate it greatly! These realizations have helped me to find contentment whether I am alone or with others. Years ago, I could never imagine being happy with self-contentment, in fact, it would have been unimaginable and a tragedy! I needed others to define my worth back then. Today, I LOVE having time to myself; I enjoy my own company, as well as genuinely enjoying being with others, especially those who I share commonalities with. I have learned in the course of my special needs journey that you will not be friends with all of the special parents with whom you encounter along the way. As a matter of fact, if it weren’t for our children, there wouldn’t be any connection at all, yet, there can be still be value in those interactions. Perhaps you will learn something important that will help your child or that individual was placed in your path at the right moment in time to teach you a valuable life lesson. I have definitely experienced such moments over the years and have come to appreciate them for the gifts that they truly are. And THAT is truly enough!

Rain or shine, snow or sleet, alone or together with others ,I continue to learn the beauty, pain, love, and richness of the human experience in this thing called “Life”, particularly influenced by the special needs journey with my beautiful Brian, yet, I am not ultimately defined by my son. I am still Me, Myself, and I , an eternal work in progress, whom I’ve come to know and love over the years and, yes, that’s good enough for me (us, lol 🀣)!

Until we meet again, thanks for reading! 😊

You’re Special! (Not Really)

Last Summer, a wonderful biography was released in the movies about Fred Rogers, the beloved host of “Mr. Rogers Neighborhood”. He was a man who was incredibly gifted in deeply connecting with children from all backgrounds via a daily TV program on Channel 13 in the 1970s. It was a delightful film that showcased the heart of a man who truly loved to bring happiness to kids and to make them feel important. Mr. Rogers communicated daily to his young audience “you’re special!” and meant it with his whole heart!I believed him wholeheartedly myself while watching this film. I was particularly moved by a scene in the movie where Mr. Rogers was interacting with a physically disabled young man. It reminded me of when two best friends get together. There was genuine interest and love and no one else existed in that moment. No wonder Mr. Rogers was so beloved amongst so many children back then! The values of love, kindness, respect, and compassion that he taught through his daily shows are still the things that all children ( and adults) desire and respond to; it is a part of our human makeup and never goes out of style! One could definitely conclude that Mr. Rogers was indeed a very special person, although I don’t think he would have necessarily thought that of himself. Yet, his connection with thousands of children over the years via his TV program leads me to believe that he certainly was extraordinary.

Disabled children and their parents are often referred to as “special” as well, though I honestly see nothing “special” about disability and it’s many components. Brian was born with Down syndrome and later diagnosed with autism. Both of these developmental disabilities cause several consequences that require medical, educational, and social interventions and always will. Don’t get me wrong- I understand why people say: ” Brian is such a special boy” or ” You and Jim are such special parents”. It is usually meant sincerely and with the best of intentions. In fact, if the shoe had been on the other foot, I don’t doubt that I would have said the same exact thing; I’m sure I would have! Yet, from my vantage point, I can tell you that there is nothing at all ” special” about my son’s disabilities or his needs. Brian’s requirements just happen to be a part of who he is. We choose as his parents to help him as best we can. We often make mistakes. We become weary working on the same goals, year after year. The fear of Brian’s future when he becomes an adult looms over our heads like a Damacles sword. And the inevitable time when Jim and I are no longer here: what then? The list goes on and on. In the early years, we were extremely overwhelmed and afraid. Today we are sometimes still overwhelmed and afraid. Raising children is certainly a faith walk, whether they are disabled or not, but the physical, emotional, social, and psychological needs of kids like Brian are generally more intense and for a lifetime. It is certainly not a journey for the faint hearted, yet we as parents, and especially our children, persevere and are amazingly resilient, as the human spirit often is.

I often think about how do we parents and our kids go on, day after day, year after year?… Sometimes people will say ” I don’t know if I could parent a disabled child”. Jim and I weren’t sure either, especially in the early years. But what choice do you really have? This is your flesh and blood, the child that has been given to you. Yet, I learned a few years after Brian was born that an acquaintance had chosen to give away her baby boy with Down syndrome. At the time, I confess I was appalled that she would do such a thing. She knew about Brian and it didn’t make any sense to me why she did not want to keep her beautiful son. Over time, and in the experience of caring for Brian, I came to understand that not everyone is capable or wants to raise a disabled child. It is a choice that some people make. For those of us who do choose to raise our disabled children, we have a lifetime journey ahead that requires strength, courage, grit and a sense of humor. The latter has served me well when things are really out of control and the former three have been modeled by our beloved Brian who is Strength and Courage Personified. Raising Brian is difficult, yet rewarding, sometimes painful, often tiring, and incredibly loving. I can’t imagine life without my son; I have the privilege of being Mom to the sweetest soul I know. I have never known such a pure, unconditional love. This love sustains me in the challenging times and ultimately encourages me to pick myself up and move forward again and again.

For my husband and I, we choose to walk by faith when a lot of things don’t make sense in our lives, especially when it comes to aspects of Brian’s life that we have no control over, which is pretty much everything! We exercise our free will in making the best choices that we can for our son’s well being in all aspects of his life. We have learned tremendously from many people over the past 16 years, who we believe were put in our lives for a reason. I am forever grateful for their help, support, and encouragement and don’t know what we would have done without them! Some of these individuals were in our lives for just a season, while others have become our friends. Either way, we are the better for it. The support and love from our extended family has also been a great comfort and encouragement both in the good and bad times while raising Brian. It means more than we can ever say.

Jim and I don’t see ourselves or Brian as special, rather, we are just ordinary people placed in extraordinary circumstances. We wish Brian didn’t have to endure the multiple consequences of his Down syndrome and autism for the rest of his life and would have certainly preferred if he could have avoided it all together. Since we can’t change these facts, we have chosen to change our perspective on his situation, one day at a time… We choose to focus on the positive, (most days) when we don’t always feel like it. We are realistic about Brian’s challenges and their implications on his life, but remain hopeful. We celebrate every small achievement, because it’s too important not too! We remind ourselves how faithful God has always been in providing for Brian and will continue to be. We choose “an attitude of gratitude”- it does not come naturally to us at all, but over the years we have made a wonderful discovery that there is always some reward and a peace when we decide to be grateful, no matter what. It’s like exercising a muscle, the mind also becomes conditioned by what you focus on after a while. We choose to count our blessings and discover that we really have so many! When we fall, we get up when we are ready, which happens quite often. We give ourselves lots of slack when we make mistakes. We try to take care of ourselves so that we can take care of Brian- he is depending on us to do that . Eating better, taking naps, laughing a lot. Doing whatever it takes, whenever we can, to make our extraordinary lives just a little more “ordinary”. Simplicity is great and definitely underrated! I am grateful for any and all of these moments and will continue to seek them always. I’m sure Brian will thank me for that! 😊

Until we meet again, thanks for reading!

Take A Break!!

Brian celebrated his 16th Birthday in Niagara Falls this past Sunday with full fanfare and lots of brownies, just the way he likes them, with lots of whipped cream and hot fudge! Life can be sweet for our beloved son and we are most grateful that he can experience new things , even when it takes him out of his routine and comfort zone. I often say to my husband that we should continue to keep this momentum going while both of us are still mobile and motivated. A part of me is in denial that we are getting older, although my knees remind me every morning that this is indeed the case. Energy levels are less, dinner at 4pm sounds devine, and being referred to as “Mam” is the norm these days. Forever young on the inside, but changing with time on the outside, a part of the life cycle that all of us must face. Denial is just so much easier and a much better destination, at least for a while, don’t you think?

Milestones, like birthdays are also a reminder of how far Brian has come, while simultaneously how little has changed, with a big question mark that is the future. It’s a curious dichotomy of the known and the unknown. The future is scary and hopeful at the same time. It’s a time to also take a break and live in the present moment and to let tomorrow take care of itself. I am still learning how to do that, a work in progress for sure, but I am getting better. Vacation this week has definitely helped me with relaxation, even though there is always a certain level of stress because of Brian’s many needs. No matter where you go or take a break, a respite, a getaway, whether for a day or a week- it is an absolute necessity for special needs families. We may and often have had to sacrifice many other things, but down time is too precious not to take. In fact, it’s most important on my list of priorities, and I will do whatever it takes to make it happen. It’s worth it and you’re worth it, repeat!!

In addition to family vacations, the gift of respite made possible by others is also what special needs parents truly covet: time alone, time with each other, time away, time to sleep, etc… It’s a precious gift that is often hard for many special families to come by and so appreciated when it does happen. We really appreciate those breaks and they provide the impetus for us to keep moving forward, for our journey is a long, exhausting, and often lonely one. So just in case extended family or friends are wondering what to give for the holidays, you have the perfect idea to share with them! πŸ˜ŠπŸ‘πŸ»

It’s hard to believe that Summer 2019 is almost over, just like that! I am grateful to have experienced its warmth and light nights . I love the light, breezes, and vibrant colors. I wish to bottle these things for a bitter cold day in February when they will come in very handy. I love this moment in time as I write. I’m so happy to spend a few days at the beach with Jim and Brian before we resume our regular routines. I’m eternally grateful to be colon cancer-free 10 years this month. I pray to continue to have an “attitude of gratitude”, especially when tough times inevitably arrive. I am especially grateful for this vacation because I really needed a break. The The Ocean is the perfect elixir for all that ails you… 🌊 🌊 It’s Brian’s most Happy Place and ours as well!

Until we meet again, thanks for reading! 😊

Milestone Living From A Special Needs Perspective

Our Summer has been an unusually busy one, with family events, camps, vacation, and Summer school for Brian. As always, Summer goes much too quickly and it’s hard to believe that the middle of August is almost here. Today happens to be one of those rare quiet days, with nothing especially pressing. It’s a gorgeous morning and you wish to bottle today’s sunshine for a bleak winter day in February. Before you know it, Winter will inevitably arrive way too soon in all its snowy splendor and freezing temperatures, but until then, there is still more Summer to savor!

Our extended family has been together this Summer for some very joyous occasions including: our great niece’s baptism, our niece’s wedding, our nephew’s white coat ceremony for medical school, our Aunt’s 80th birthday party, a visit with our extended family from Norway, and just around the corner: Brian’s 16th Birthday party with extended family! Plus Niagra Falls and the Jersey Shore towards the end of August. Whew!! A whirlwind of activity, fun, treasured memories, and milestones that will always be fondly remembered

It was very heartwarming to see Brian participate in these special events this Summer in his own unique, yet predictable way. He loved being with family and I notice now that he is more observant of people and places than before. Transitions to new environments and meeting new people still take time, but once Brian settles in, he is usually fine, yet we always have snacks, headphones, an iPod and iPad for backup, just in case. So far, so good! This is probably the hugest social milestone for Brian, the ability to tolerate so many new environments and to enjoy family members who we don’t see that often. We are so proud of our boy for his resilience and willingness to keep trying, as he does in all things, step by step…

Upon further reflection of these wonderful gatherings, I realize once again that our milestones as a family will always be different than everyone else’s. That’s no huge revelation of course. It is obvious that Brian will not get married or go to college. Nor will he ever drive, hold a full-time job, or live in his own apartment. While Jim and I have certainly accepted these facts as Brian’s reality, I still occasionally experience that longing, that ache for my son, wishing that he could have had those life experiences too. Recent events did trigger those feelings in me, albeit briefly . It’s funny, because I thought I was “past” such feelings. Yet, acceptance and feelings of the heart don’t have an expiration date. I equate recurring grief from long ago to an old wound that never quite heals over and when the wind blows the wrong way, it’s painful. So it was a few of those gusty winds that had blown over my heart during certain moments this Summer. It is just one of those things that comes with the special needs journey that we can’t ignore and have to call it for what it is; a sadness, a disappointment, a longing, a loss. Brian’s story is not tragic by any means, yet, I have had to change my attitude and perspective to what’s really important to him, for him, and for our family. This has taken time-it is really a never-ending work in progress!

Luckily, Brian is not aware of what I think he is missing: it really is MY issue, not his, and for that I am very grateful. Our little family has learned that the “highs are higher” and the ” lows are lower” as far as Brian’s life milestones are concerned. For example, it was a HUGE deal when Brian took his first independent steps at 5 years old. Communicating his wants for the first time via the speech app on the iPad when he was 10 years old warranted a pudding party celebration! Or hearing Brian say, “Mom” and “Dad” consistently this year has been one of our all-time highlights! And there are many other “highs” over the years, many of which I post on Facebook to share with our extended family and friends who don’t see Brian too often. I do love the historical record this venue provides, so we can see how far Brian has come, step by step…These captured moments also give me hope when I get discouraged sometimes during those “low points” as well.

Conversely, it’s hard to see light in the darkness when certain milestones seem so elusive.. Like using the bathroom independently, or showering/getting dressed. I never realized until we had Brian just how many steps each one of us take every day to perform self-help skills and activities of daily living- there are literally thousands of them! Neurotypical people do these things automatically once they are taught. Special children require oodles of repetition, practice, and patience to learn these skills- some of which will be never learned at all due to their complexity for our kids. This is when the ” lowers can be lower”, when these milestones don’t come to fruition, even after many years. This is also where support, sleep, readjusted priorities, and most importantly, a good sense of humor is absolutely ESSENTIAL!

This is not to say that Brian won’t continue to learn and achieve such milestones, for he certainly has and will continue to learn what he is capable of. Learning is life long for the disabled- there is no ceiling or limitations on what can be achieved. It will just take longer and will require patience and support. As far as Brian is concerned, life is long. I have learned more about literally living in the moment and being fully present from my son, than from anyone else, a great personal milestone that still requires patience on my part, but I am getting there too, step by step..

Brian will turn 16 years old in just a few weeks, a fact that my brain cannot fully comprehend! Where did the time go, even those many painful moments over the years, where time froze and I thought would never end? So many milestones achieved, with many more to go, but most importantly, Brian’s life is one that we believe he is happy living, at least most of the time. And that matters more to him than the achievement of a million milestones!

Until we meet again, thanks for reading! 😊

Not A Happy Camper!

Summertime is the season for sun, outdoor adventures, and long lazy days. It brings warm weather, swimming pools, an extended school year, and camps for kids. There are school forms, camp forms, forms for the doctor to sign, and a sense of urgency to register our children as soon as possible in order to avoid the dreaded “wait list” for these camps. Special children in particular can not be left to their own devices or have too much idle time. Many of our kids don’t know how to occupy themselves without a structured routine, which is why Summer school and camps are so important in filling those gaps. Brian is no exception to this and is most fortunate to participate in all of what the Summer has to offer. He has typically enjoyed all of his camp experiences- until recently.

I was looking forward to having Brian participate in a camp that he had attended in the past. He always seemed content both coming and going from this particular program, sans the initial “transition blues” that is typical Brian, especially on the first day, but then he would settle in. However, this year was different. Brian was not happy, not just on Day 1, but for the entire time he was at this camp. He “communicated” his displeasure by verbal protest and body language, but I honestly thought during those particular moments that he was just being a “teen with a tude”. I also thought there was never a problem at this camp before, so there was no reason not to send him. I had also arranged for Brian’s home behaviorist to come to camp and provide his counselor with support every day for 2 hours . This always worked out well for both the counselor and Brian in the past and I had no reason to believe it would be any different this year- but I was wrong.

While the behaviorist was there daily, Brian did participate in various camp activities, albeit briefly, preferring some more than others. Shockingly, he refused to go into the pool the first day, which is Brian’s favorite activity of all time! I should have known right then and there that something was wrong…The behaviorist was not there during pool time initially. The same thing happened again the following day- Brian did not want to go in the pool. The next day, the behaviorist was there during pool time, and Brian went in. Then the unthinkable happened- Brian had an accident in the pool. He hadn’t done that in years- I was truly shocked! I was also annoyed at myself for not “listening” more carefully when Brian was clearly communicating that he was unhappy. In retrospect, Brian did not want to get out of the car each morning and couldn’t wait to get into the car each afternoon. When my husband asked Brian how things went at the camp, ( which Jim mentioned by name) he whined and signed ” all done”. I am so sorry that I didn’t “get it” sooner in the week: it makes me so sad that I let Brian down. I honestly didn’t realize exactly how much Brian understood of what he didn’t like and attributed everything to adolescence and transition difficulties. It is moments exactly like these when I wish my son could speak and tell me what is bothering him.. It is also a stark reminder of how dependent we are on others to help us help Brian and how we always will be.. This very thought makes me both scared and grateful at the same time.

No one knows better than Jim and I how many and complex Brian’s needs are. Which is why Brian needs his own personal counselor at camp. I am also aware of how difficult it must be for a camp counselor to be placed with a multiply- disabled camper they have never worked with before. Which is also why I arrange for a behaviorist to “train” the counselor for a few hours each day. I’m not sure what more I could have done. I do also wonder whether the camp application that I painstakingly filled out was really looked at. Or how carefully were Brian’s needs considered before he was assigned a counselor?

It is obvious that there was a communication breakdown between home and camp. It also appeared that the counselor was overwhelmed by Brian, but didn’t want to say so. I felt like I had to “pull out” information daily as to what was going on. Thank goodness the behaviorist was there for a few hours each day and I was able to learn things that way. It was finally revealed that one morning Brian sat for a significant period of time doing nothing because he refused to move, despite the daily mentoring from the behaviorist. That was the last straw for me- he won’t be going back to this particular camp again.

I wish this camp experience had been a more positive one for Brian. It should have been, considering all the planning, time, and resources that went into it. I had also hoped that the line of communication between home and camp would have been more direct, consistent, and transparent. Although this was not the case, perhaps the silver lining was that Brian did clearly express his displeasure, the most I’ve ever seen him do, and I will make sure to take it more seriously next time. Maybe the camp was not equipped to manage Brian’s needs this year- if that was the case, they should not have accepted him into their program. I will never know exactly why Brian was so unhappy at camp this time, but what I do know is that some things in life are meant to reach their natural conclusion, regardless of the reasons. I believe this camp experience qualifies as one of those instances.

I may reach out to the camp with my concerns, just as an FYI, but haven’t determined exactly when. I’m sure I will be inspired to do so at the right time; I’m just not quite ready…In the meantime, there is still a Summer to be enjoyed and savored, which is exactly what Brian plans to do- especially in the pool! 🌊 🌊

Until next time…thanks for reading! 😊