It started off as an ordinary food shopping expedition this morning at our local Shop Rite. I immediately proceeded to the deli counter, (which was crowded as usual), when I first entered the store . Today was no exception- you would think they were giving Billy Joel concert tickets away, there were that many people! I grabbed my number, then went over to the veggie and fruit section since there were 10- 15 people in front of me at the deli. It was time for the usual “beat the clock” game that I do every week: I try to place as much produce in my cart before my deli number is called. I completed this mission successfully, with 4 people still in front of me to spare. Quite pleased with myself, I started to go through my emails and texts while waiting for my number to be called, only to be interrupted by a woman standing next to me. ” This deli counter is always crazy every time I come, they should hire more people” she complained. I concurred that the deli counter did indeed have its hectic moments, like any supermarket.

This lady then proceeded to tell me her entire life story. She was picking up deli meats to host a luncheon today for her young grandchildren, a boy and a girl. She showed me photos of these 2 adorable youngsters, then asked if I had any children. I proudly showed her Brian’s school picture, which she stared at intently for what seemed to be an eternity , then exclaimed: “what’s wrong with him?” Not: “He’s a handsome boy” ( which I happen to think he is of course) or ” what beautiful eyes he has” or “what a lovely smile”- nothing even remotely like that. Fortunately, my deli number was just called at that moment, so I didn’t have to reply and proceeded to ignore this woman while I placed my order. She definitely struck a nerve so deep inside of me that I even shocked myself. If I had looked again in her direction, I’m not sure whether I would have pummeled her or begun to cry. I probably would have done both, truth be told.

I know it was just a stranger who was clearly being insensitive and inappropriate, so why did it bother me so much? It shouldn’t matter what anyone says about Brian. Yes, I know that Brian happens to wear his disability on his face because of Down syndrome. But this has nothing to do with who he is! Yes, I also know that he stims, vocalizes, and perseverates on many things because of autism. He has many quirks that make him unusual and challenging. I know this better than anyone. I wish his challenges did not exist and am often sad for my son because I know that life will not be easy for him. Brian will always require assistance with all facets of living for the rest of his life . But there is nothing ” wrong”; these are just incidental details about what my son needs.

I suppose these realities were the trigger which this woman activated in me this morning. Plus the fact that I didn’t have my cup of coffee prior to leaving the house was obviously a huge mistake- lesson learned! But Brian’s life is not a “tragedy”- he actually lives a very good life, one that includes people who love and care for him, and activities that give him joy and purpose. Brian’s quirks also make him beloved and sweet. He gives the best hugs in the world, he is generally happy, and loves others. I adore my son and take great exception to anyone not giving him the respect that he is due, just like any Mama Bear would. Thank goodness Brian doesn’t understand when people are being insensitive or rude, a true blessing in disguise. A part of me wishes that I could have responded back to this woman with ” what is wrong with YOU to ask such a question?”, or, ” unless you have something nice to say, don’t say anything”, but I was too flabbergasted! I kept telling myself that she just didn’t know any better, as I hurried off with my deli meats, holding back my tears. I had to take a “time out” in the water/ juice aisle for a few minutes, which was luckily empty at the time.

Fortunately, such encounters are very rare, so much so, that I honestly don’t remember the last time anyone spoke disparagingly about Brian. Our society has come a long way as far as acceptance and appreciation of the value of disabled people, just for being themselves, as well as for their talents, and contributions. Thank God for that, but obviously the work is not complete and there is still much to be done. I am grateful for the overwhelming majority of people in Brian’s life who see him as a valuable person, worthy of the same respect and love that all human beings deserve, and treat him as such. Nothing warms my heart more or encourages my spirit. I see not only the huge difference that the people in Brian’s life make, but conversely, Brian, and all of the special young people that we know, also make an indelible mark in the lives of the people who know and love them. There is truly nothing like these relationships; you only have to spend a little time to see how life-changing and beautiful they really are…

If I were ever to see this woman at the deli counter again, I’m not sure if I would still want to punch her out or continue our conversation. This time, though, I would definitely brag about Brian’s many wonderful virtues. In all honesty, she probably wouldn’t even remember meeting me or what she said. While today was a reminder of how painful it can be when someone makes an inaccurate judgment about my son, it was also an opportunity to remember the truth about Brian and “all that is RIGHT with him”! Precious gifts can be wrapped in a variety of ways and I am so glad for the treasure that is my beautiful boy. People who do not know Brian may make snap judgments about him that are based on impressions and not facts. That is one slippery slope that everyone should avoid. Please reserve your judgment until you get to know WHO my son is. I think you will be very pleasantly surprised when you discover exactly what he likes and what he is capable of. You will ultimately see that there are more similarities than differences. And that is TRUTH that can be taken to the bank (with exponential interest) for a lifetime!

Until we meet again, thanks for reading! 😊

One of the most precious gifts that I have received, because of Brian, are the friendships forged over the years with other special needs parents. Chances are, our paths would have never crossed otherwise, and it is because of these friends, that I am a wiser, more compassionate, and assertive individual, than during the “pre-Brian” days. I find great comfort and am often validated while listening to and sharing our children’s experiences with other special Moms. Our journeys can be isolating and lonely. While others outside of our special sphere can certainly empathize and be very supportive, there is nothing like another special Mom who “gets it”. And there is certainly a LOT that goes on!

I am always amazed how the same, yet very different, our disabled children are when speaking with other special Moms. These differences are primarily due to the specific nature of our kids disabilities, yet the behaviors, teen angst, favorite activities, etc. can be very similar. We special parents often experience the same concerns, emotions, hopes and dreams both for our kids and for ourselves as well. When Brian was first born, I was a thirsty sponge, drinking in as much information about Down syndrome ( then autism ) as possible, primarily via the written word, the Internet, and medical professionals. I didn’t want to miss any opportunity to help Brian in any way . In retrospect, I realize I was sometimes trying to ” fix” Brian in certain ways, instead of accepting him for who he was, disabilities and all. Such were the tempestuous forces of fear and despair that drove me in those early days…Yet to this day, I am still an information-seeker for my son to help him live his best life. The difference is now, I am driven by hope and belief of what is possible, whether things actually work out or not. Tomorrow is another day, not the final day that is written in stone, as I so often thought in the past. It was other special Mom friends, who over the years, helped me to arrive at this conclusion through their generous wisdom and support.

My grief held me back in those early days for a while before I was really ready to share with other special parents, so I had to start with the smallest of baby steps. Eventually, I was ready to connect with a small group of Moms via our early intervention home-based therapists through a monthly support group meeting at a local McDonalds, when Brian was just an infant. It was definitely awkward and difficult. I think each one of us were still trying to process our new realities, so the information exchange among us was rudimentary at best. I felt even more isolated during that time, especially after Brian’s open heart surgery, which kept us home for several weeks. There was definitely some postpartum depression thrown into the mix as well, so it clearly was not the best of times. Eventually, life changed again as it always does, with the help of a center-based early intervention program and a parent support group on the premises. The sun finally came back out, thank God!

I felt a real sense of relief that I was not alone in this second support group and that Brian was truly accepted for who he was. I also learned so much from both the social worker (who had her own daughter with special needs) as well as the other parents. What a blessing to get tips and referrals, from sneakers to doctors, and everything in between! Parents are always the best source of information and continue to be so, in my experience. The friendships that formed as a result of our kids, was just an extra bonus, although that is not always the case, but that’s OK. I really don’t need a gazillion friends, rather, just a close few ones. If you are fortunate enough to have even one true friend in this life, I believe you are very blessed!

Sometimes, the only thing that I have in common with another special parent is the fact that our children just happen to be disabled. If our children are sharing the same experience, our reactions to what is happening may be very different. Our beliefs may also differ in terms of what we feel is best for our children. Variety is the spice of life, and we can agree to disagree! I don’t know what’s best for your child and visa versa. Unfortunately, not all special parents are supportive of one another at times, whether justified or not, resulting in misunderstandings, hurt feelings, and broken relationships. Sometimes it’s for the best; other times it’s an opportunity to create a closer friendship. It’s a shame when a friendship does come to an end, but perhaps the original foundation of the friendship was never built on solid ground to begin with. There are seasons in life and always other fish in the sea. As I get older, I realize that how and with whom I spend my time with is very important. Free time is too minimal and life is way too short to spend it with people who do not support, love, and accept you and your special child for who they are.

It’s fascinating how children with the same dual diagnosis as Brian are very similar at first blush, yet so radically different when it comes to each child’s abilities. This is something I would have never guessed ” looking from the outside in” prior to Brian’s arrival. Just another misconception of special needs that I needed to learn in the beginning. I am always learning from our kids and the other special parents, everything from best behavior practices, to how to really unwind and speak my truth, often over a cup of coffee or a glass of wine. These are times I really look forward to! Sometimes the very best moments have been those when I just listen and not offer any advice, unless I’m asked. Sometimes a friend just wants to be heard and doesn’t expect a solution to their problem. I, too, sometimes just want to vent, cry, or laugh about something special needs related or not. In the end, each one of us are just seeking the love and solace of a good friend. I try to be the friend that I would like to have and am truly grateful for the friends I do have. They have enriched my life for the better and I hope I have done the same for them.

Until next time, thanks for reading! 😊

There is something that special needs parents can never get enough of and it is often in very short supply. Sometimes it’s free, and other times we pay for it, but it’s worth every single penny! Most of us would say that this gift is invaluable and it is much appreciated when we receive it. I am more aware as time moves on how essential “it” really is for my mental and physical health. In case you haven’t already guessed “it”, I am referring to the most coveted and much needed “respite”! It is often considered to be a luxury for many special parents and unfortunately hard to find. However, it’s truly a necessity that we cannot do without if we expect ourselves to take care of our special kids long term. This fact becomes more relevant as time moves forward. I forget sometimes that I am getting older; call it a case of extreme denial, although my body gently ( and sometimes not so gently) reminds me that things are changing, slowing down, etc, the inevitable part of the life cycle that each one of us will face…

Acceptance and awareness of middle age finally occurred to me last year, after my 57th birthday. I’ve noticed over the past 9 months, small differences, albeit significant enough, to get my full attention. Things like experiencing the Tin Man Syndrome when getting out of bed each morning; the stiffness in the joints that require movement and the fish oil to get me going again. Or my energy level that was once quite robust ( in my heart I will always be a night owl), but is now mostly depleted by the time Brian goes to bed. Speaking of sleep, it’s been disrupted many nights by menopause, racing thoughts, Brian’s moonlight shenanigans and other pesky interruptions. Chemo-induced neuropathies in my fingers and toes will forever remind me when cold temperatures are here and can also be quite tiring. Finally, changes in memory, being forgetful, like standing in front of the pantry for several seconds trying to remember exactly what brought me there in the first place. It’s all predictable, inevitable, and sometimes scary if I think too much about it. I pray daily that Jim, Brian, and I don’t lose our memories simultaneously- can you imagine what a disaster that would be?! Hence, the emphasis that we try to place on good nutrition, exercise, and rest, the important ingredients for a long and healthy life. Eating well and physical movement are under our direct control, but the rest and relaxation component requires more than just a good night’s sleep. We are dependent upon others to help us get a much needed break, which is quite often. I look at these breaks, wherever and whatever they are, as an investment in my emotional and physical well being, which results in being a happier, more patient Mom and wife.

When Brian was first born and for quite a long time after that, I did not believe that I had the right to relax for some reason. This was not a conscious thought, but my actions and lifestyle were so unbalanced and “Brian Centric”, that it’s no wonder I didn’t have a nervous breakdown. I came close, however, when my body and mind sent warning signals that I just couldn’t ignore, like depression, and eventually colon cancer. Cancers can be caused by inflammation in the body, which can be triggered by extreme stress, which was my experience at the time.

So, when you know better, you do better! Going through these experiences have taught me that I needed to dramatically change the way I was living my life and that respite must be part of the daily regimen, along with nutrition and exercise of some kind. Respite comes in many shapes and forms. My personal favorite is alone time. It’s funny how introspective I’ve become in recent years and how I crave solitude for physical and spiritual replenishment. I’m outgoing, but I’m a private person. I love being in a crowd, yet I most enjoy “one on one time” with family members or friends. I especially covet that alone time to walk, read, nap, or watch a favorite program; it really is the simple pleasures in my life that can be most restorative. So, any opportunity I can create to make the aforementioned happen,, I do so, even if it is just for an hour, Every. Single. Day. These things are as vital as breathing air, so they MUST happen, no excuses! I’m too important not to take care of myself.

I am so grateful for any and all respite opportunities that I receive that keep Brian busy, whether just for an hour, or overnight. It really is good for both of us; I get to relax and he has opportunities for social independence, which is especially important for later on when Jim and I are no longer here. I enjoy catching up with other parents/friends or taking the time for myself or with my husband. I am refreshed and able to resume my caretaker role for Brian when I return. Brian is learning skills and spending time with peers. I can’t think of a better way to detach and recharge my batteries: it’s a true “win win” for all concerned. I have also learned that respite time doesn’t have to break the bank or require days away ( although that is certainly the best kind of break!) to have the same refreshing effect. The key is the respite frequency and to incorporate it into the daily schedule.

Remember: if the “Mothership” ( or “Fathership” ) goes down, the whole family will sink… That is not good for me, my husband, or Brian. There is too much at risk if I don’t take care of myself; self-care is my priority and must be my life-long mission for me to survive this special needs walk for the long haul. There is no other way- “you are worth it, so work it”,repeat!!😊👍🏻

Below is a list of some of my favorite things to do whenever I take a respite. How about YOU?!

Reading a non-special education book

Talking with a good friend

Napping

Taking a bubble bath

Going out to dinner with Jim

Meeting a friend for breakfast or lunch

Walking

Planet Fitness

Listening to music

Watching old Seinfeld episodes

Getting on a plane

Writing

Planning a vacation

On a final note, most special families would agree that one of the top gifts they would LOVE to receive for Christmas, Chanukah, or their birthdays, would be RESPITE! The precious gift of time alone or away for those parents raising disabled children is truly most appreciated, more valuable than any present money could buy, believe me!

May you experience the daily respite that you need and deserve, in order to live the special needs life with strength and grace. Until we meet again, thanks for reading!

😊👍🏻

Many people with autism have limited recreational interests and Brian is no exception to this.. In his case, there are many reasons why this is so: Brian has significant motor planning challenges, along with focusing issues, and slower auditory processing. Not to mention his own unique personality that clearly communicates “no” to many things, especially if they are new and unfamiliar. It’s a delicate dance with my son in this regard and I have to pick my battles with him. His automatic default would be to sit on the couch all day (literally!) and scan “YouTube” videos or Little Einstein and Mickey Mouse episodes. I’m fascinated, by the way, how Brian is so proficient in maneuvering around these programs, despite his severe disabilities. I caught him recently doing the exact same thing on my iPhone while scrolling my Facebook newsfeed, lol! Perhaps Brian will also use FaceTime in the near future; I really wouldn’t put it past him! It proves once again just how much our kids know and what really motivates them. Secretly, I’m very pleased to see that awareness and engagement, but we all know that too much of a good thing is not necessarily a good thing at all, and that especially holds true for iPads and iPhones.

So, my “battle plan” with Brian is usually to encourage him to try a new activity, often to his great reluctance. He is the ultimate Creature of Habit and Repetition. He demonstrates his displeasure with something new most effectively in “The Freeze”, formally known as the “Stop, Drop, and Flop Move”. Many of you understand exactly what I’m referring to, it’s that “what is this, “I don’t recognize this”, “I don’t want to do this”, and the infamous, ” you can’t make me”. This has been Brian’s national anthem for years! It’s so predictable and sometimes simultaneously wearisome, depending upon the amount of sleep I had the night before. Years ago, this behavior would have required a team effort of tokens, edibles, and enough positive reinforcement for a lifetime for Brian to comply and try. Thankfully, he has moved on to the point of needing just a verbal command, then waiting him out for 20 seconds or so until HE decides it’s time to proceed-I can really set a timer to this one!

Brian’s Great Resistance is mostly to physical activity/movement and has always been. In part, I understand why, as he has low muscle tone overall and severely pronated ankles specifically, hence, the ankle/foot orthotics that he wears. Brian was a very late walker and struggles greatly with coordination. Sports are very difficult for him, although he has recently started to experience some success with both swimming and kickball. Brian is also starting to walk more, and as basic as this sounds, this is huge for him. I could really care less about Brian’s athletic abilities, but what I do deeply care about is his long term health. People with Down syndrome have the proclivity to become overweight as adults, resulting in potential long term health problems. It’s something we are trying to help Brian avoid by instilling good habits now. I also hear the voice of Brian’s orthopedist in my head, warning me not to let Brian become overweight, because too much weight on the feet would be detrimental to his already compromised ankles, requiring surgery and a lengthy recovery. No thanks, Doc! This is motivating enough for me to try my best in keeping Brian physically active, at least most of the time. Thankfully, both school and local recreational activities help us to help him achieve this goal. Brian is not quite as resistant to movement as he once was, so this is indeed a huge victory for him, achieved over a very long period of time.

Next is the Recreational Resistance to hobbies, such as arts and crafts or puzzles. Similar to physical movement, he resisted these things with all of his might to the point of sensory meltdown for a very long time. Only in recent years, will he even try these things very grudgingly, very briefly, BUT at least he will try them. I am very proud of Brian for at least trying and I do understand his reluctance; I too, dislike puzzles and can only draw stick people, lol. Brian is a music maniac and a water bug. These things feed his soul and create a joy in him that is palpable. A recent addition has joined the ranks of Brian’s Preferred Activities, and although it is not quite as beloved as music and swim, it’s pretty darn close and was quite a surprise to Jim and I: Brian has become obsessed with the written word, aka: books !📚 📚

Now this addition to Brian’s recreational repotoire is quite fascinating, as he does not read, however, he LOVES to be read to! Brian has a special affinity for preschool and primary board books, particularly the Eric Carle (Polar Bear, Brown Bear), as well as the James Dean, “Pete The Cat” series, and many other books now. Book reading was always part of the bedtime ritual since Brian was a baby, but he has taken it to a whole new level with requesting the reading of multiple books at a time each night on his Proloquo app on the iPad. We limit it to 4 books and the squeals of delight that come from this kid right before reading the first page of the first book, would make you think that he just won the lottery! I am so delighted that Brian is now interested in books. I loved them as a child too: there is nothing like the smell of a new book, the feel of a book in your hands, the way you can thumb through the pages of a book. Reading always fueled my imagination, increased my vocabulary, helped me to learn how to write, etc. Books are the great escape and how we learn so much about others and the world around us. Although Brian’s experiences will not necessarily parallel mine, what we do share in common is the joy of reading a good story and the feelings that books evoke. Our reading ritual at night is a fun, happy event for Brian; he revels both in the story and in the physical contact in sitting together. Brian has begun to examine the pictures on each page, pointing out “characters” when requested to do so. Brian does understand who the characters are in the books we have read repeatedly and anticipates favorite parts through his sheer glee. We have a ” new book of the month”, to introduce a new book, otherwise Brian would want to have the same few books read to him, lol. Slowly, but surely, he has built an interesting collection over time, with no end in sight!

My husband and I will continue to expose Brian to various recreational opportunities as they arise for both his physical, educational, and social development, while simultaneously respecting his limits when he makes them apparent to us. I sometimes still have to remind myself that it’s not about me, but rather it’s about what will make Brian ultimately happy. It’s an area of struggle, but like Brian, with repetition and time, I, too, am getting better. I am learning to detach from the notion of what I think Brian will like or won’t like to do. I am also learning to trust that Brian is quite capable in communicating in his own way and time what is best for him. It’s exactly what I would want if I were in Brian’s shoes, truth be told. In the meantime, Brian enjoys his music, swimming, and the nightly ritual of beautiful books, whose pages contain enough delight and wonder for his eyes and ears to behold. The characters are fun and the stories don’t disappoint. It’s the Grand Prize at the end of the day and the perfect elixir for bedtime.

“Polar Bear, Polar Bear, What Do You See?”

” I See A Young Man With A Book On His Knee, Looking At Pictures Engagingly” 😊👍🏻 – The End

Until next time, thanks for reading! 😊❤️