Our children are gifts from God, specifically meant to be ours, and we are privileged to be their parents. Being a Mom, for me, has been a joy unlike no other. Conversely, I have also never experienced such intense pain and sorrow during this journey. While parenthood can certainly be extreme on either end of the emotional spectrum, there is also the mundane and predictable “in between.”It’s during an “average day” that I can take for granted or forget why I love Brian so much. We go through the daily routines, meet the necessary obligations, handle both the expected and unexpected challenges, then do it all over again the next day… so much time and effort are required, often leaving little energy and sometimes a bad attitude especially if we are overwhelmed, frustrated, and tired. At least that’s how I feel sometimes anyway.

I realize that I have to be very intentional with my positive thoughts and actions during those times, especially when I don’t feel like it . Being negative comes more naturally, yet you realize it’s better in the long run to live your life in a positive way. It’s like exercising a muscle that you know will be stronger if you use it, but actually doing the work to achieve this end takes a strong mindset, determination, and belief that the effort is worth it. History has shown me over and over again that this is certainly true. But sometimes a strong self-will is just not enough- I need a role model! I have always found such inspiration in my beloved Brian. He is the one who ultimately gets me back on track, shows me the way, and sets me straight by the genuine life that he leads daily with strength and grace. How I wish Brian could fully understand exactly what he means to me and how he has impacted my life for the better in a million different ways… If Brian were able to read, this is the letter I would write to him:

My Dearest Brian,

You are the BEST son a Mom could ever hope for! I love you so very much! I never thought that I would ever become a parent, then God gave me the best gift in you. I think you were pretty excited to join our family too, as you arrived a month ahead of schedule. What a surprise, so wonderful and very scary at the same time!

Dad and I were both very sad when we learned that you were born with Down syndrome, but that didn’t change how much we adored you from the moment we laid eyes on your beautiful face! You were feisty, hungry, and sleepy, just like any other infant. You loved to be held, enjoyed your baths, and were always so happy to be retrieved from your crib, regardless of the hour. We were so frightened when you had your open heart surgery at 3 months old, but you persevered and showed us how truly resilient and strong you really were, the first of many times in your young life that you would do so…

You endured lots of therapies, doctors, and a second diagnosis of autism. Our hearts were broken and fearful of what life would have in store for you as a result of your dual diagnosis . Those early years especially were very difficult, but once again, you have shown over time that you can overcome obstacles victoriously! You have been a role model for what CAN be, despite the very heavy burden that you will always carry. I wish your load was much lighter, Son, but you never complain. Your heart is pure and your spirit is joyful. You live and love literally in the moment whoever and wherever you are. You are at peace with yourself- a gift that many would pay dearly for if they could.

While we don’t know what the future holds for you, Dad and I know who holds your future- the same Heavenly Father who sent you to us over 15 years ago, to teach us, and mentor us, in being the best parents for you and what you need. While there is always room for improvement, Dad and I continue to try our best.

Thank you for understanding and loving us when we have been impatient and frustrated at times because of the challenges associated with your disabilities. Thank you for being patient with us when we make mistakes. Thank you for loving us for who we are and for teaching us what is important in this life: kindness, sacrifice, humor, and love. You are the personification of all these things, a true hero and role model. Thank you for making us better, less selfish people.

My beloved Brian, you will always be the song of my heart and my joy. I continue to pray for your health, protection, and happiness, and always will. God has given you a great purpose to fulfill in this life as His Ambassador Of Great Joy- so far, you have done a fabulous job! I look forward to seeing what else is in store for you, for whatever it is, you will do it so well and with all of your precious heart and spirit.

I love you,

Mom 😘😘😘❤️❤️❤️

Thanks for reading! Until we meet again next time😊

Disney Magic is truly a one of a kind thing that is best experienced with loved ones, especially children, who can offer a fresh perspective on what it means to be young at heart all over again. A few weeks ago, Jim, Brian, and I experienced 5 days of that special magic in the Magic Kingdom, Epcot, Hollywood Studios, and Animal Kingdom at Disney World . It was an adventure of mass proportions that had been months in the making. The preparation was similar to that of planning a Thanksgiving or Christmas feast: lots of details, organization, and time, were necessary prior to the actual event itself. Finally, The Big Day arrived when we traveled by plane (a first for Brian) to the Happiest Place On Earth!

There was an underlying concern for all of the potential things that could have gone wrong during our travel and stay in Florida. Brian likes his routines: new things are initially very off-putting to him and transitions can be quite challenging. I was most concerned about Brian’s first time traveling on an airplane, especially his ears on the descent. We never know exactly how our non-verbal children are feeling and Brian has a history of sinus and ear infections. As a former flight attendant, I saw many passengers suffer with incredible ear pain 10 minutes prior to landing and there was nothing that could be done. So, I packed Brian’s s chewy tubes, juice boxes, nose spray, and his beloved goldfish crackers exactly for this this purpose and hoped for the best. Fortunately, there were no ear issues on any of the flights! Brian absolutely loved the inflight experience, as a matter of fact, he was so mesmerized, that he had his little face practically plastered to the window for most of the flights, especially during takeoff and landing. Brian also did well overall with each of the new experiences during our time at Disney World. He was initially confused as we entered each new theme park, but not upset- this in itself was unprecedented! Brian quickly came to love the rides, shows, and especially the Disney characters- we did too! The complete 4D Sensory Experience that is trademark Disney was truly sensational no matter where we went. The visual and auditory experiences were incredible and the customer service was superb all around, two huge thumbs up!👍🏻👍🏻 One day, we hope to return and relive that special magic all over again- a very important “bucket list item” that we can now cross off our list.

Speaking of “bucket lists”, I have been reflecting on my own personal ” bucket list” ever since our adventure in Disney, with a renewed commitment to realize the additional items on that list. Life is truly too short. News headlines are often a stark reminder of how things can change in a heartbeat. The recent tragedy in upstate New York where the 20 people were killed instantly in the limo accident is just one reminder that tomorrow is not promised for anyone.

Before we became parents, we had more time, opportunity, and perhaps less responsibility to pursue those things that tapped into our talents and interests. Now, it is almost impossible to do because of numerous responsibilities, limitations of time, energy, finances, etc. Yet, we as special needs parents must somehow find a way to make this happen for our own personal fulfillment- life can also be very hard and long some days.. Periods of respite are an essential starting point; after all, parents need a physical and mental break. I am so grateful for those opportunities when Brian is in school or involved in extracurricular activities. It is good for him and good for me too. Yet, this is only the beginning and that is where a “bucket list” of things that fulfill the emotional/creative sides of ourselves is just as important as physical fulfillment.

My personal “bucket list” includes:

Exploring Italy, Spain, and Portugal

Visiting Alaska, Montana, Idaho, and the Pacific Northwest

Writing a book (either special needs or cancer survivor related)

Singing karaoke

Learning another language

Playing a new instrument- I play a basic guitar and an even more basic piano, but would like to learn more..

Participating in an acting/performing group ( currently doing that via a class at the Papermill Playhouse)

Reading a book each month that is NOT special needs related

Going back to Disney! 😊👍🏻

This list is evolving and is certainly not limited to the aforementioned. As you can see, the items on my list range from the very simple to the quite complex. Who knows what the future holds and when I will be able to actually accomplish all of these things, but I am determined to try! All work and no play makes Brenda very dull and sad, so it’s part of my personal mental health contract to make sure I pursue opportunities that will feed my mind, heart and soul. I will be a happier person and a better wife and Mom when I listen to my heart’s desires.

So, what does your “bucket list” look like? Perhaps some of the items include things like: going back to school, traveling to a new place, skydiving, owning your own business, or hiking the Appalachian Trail. It might be as simple as just going out to dinner and movie once a month or taking an art class. The items on your list don’t matter -your commitment to realizing your goals is what counts most. Carpe Diem!

Until we meet again, thanks for reading. 😊

The year was 1975 in Disney World/Magic Kingdom with my friend, Irene. It is one of my fondest childhood memories, a truly amazing adventure that I will never forget! We had such a good time and I recall not wanting to leave the happiest place on earth- at all! There was something indeed magical about Disney World that encouraged child-like wonder and joy at every turn. Jim and I are so thrilled that our Brian will experience this same magic for the very first time at Disney World starting on Monday for 5 days. I’m so excited, that I’ve barely been able to sleep this week, it’s like waiting for Christmas morning to come! I feel like an overgrown kid who can hardly contain herself from the anticipation of the adventures that lie ahead. I hope Brian will have the best time of his life! Although Brian can’t tell us in words, I am sure his actions, behavior, and child-like joy will speak volumes and it will all be good!

Speaking of magic, if I had a magic wand, I would immediately eradicate Brian’s disabilities, no doubt about it! His life and ours would be much less complicated on so many levels.. Believe me, I have searched for this wand on numerous occasions- but- there is one thing that I would NEVER change about Brian, and something that I wish to aspire to myself, and that is to have more of that sense of genuine, child-like wonder! You know, that joy, curiosity, and honesty that we ourselves experienced as children, but somehow these things have been replaced over the years with skepticism, mistrust, and dissatisfaction. How did we adults ever become so jaded?

There is no doubt that our life experiences have shaped our attitudes, behaviors, and responses. Adversities and challenges of all kinds have happened or will happen to everyone one of us. These setbacks can be temporary, or permanent, and over time, can threaten to rob us of joy, perspective, and hope. It’s human to feel frustrated, scared, angry, and discouraged when we are slammed by challenges. I certainly have felt many times all of the aforementioned and have no doubt I will again in the future. But I don’t want to remain “stuck” in the details of life events that I can’t change- it doesn’t serve any purpose. It’s important to acknowledge and call things for what they are, but then there is a time to let things go and move on. So, I look to Brian for child-like guidance in such matters, and like very much what I see!

The ” World According To Brian” is a place where he takes people and things at face-value. It is a scary place, (because literally every new situation or person is unfamiliar ), but once the initial transition is made, there is a genuine appreciation and joy that Brian experiences with time and repetition. It really doesn’t take much to make Brian happy at all! His social interactions with others are a highlight for him- without words, he communicates his joy and wants so much to engage. Brian also vocalizes his sheer delight when we read several bedtime stories to him nightly- you would think that he just won the lottery; he is so happy with his books! Of course, music, goldfish crackers, and ANYTHING related to the movie “Frozen”, especially “Olaf”, guarantees the most gleeful response and joy ever seen by mankind! Such simple, yet powerful, appreciation of the little things in life is a good reminder for me.

This will also be Brian’s first time on an airplane, and we are hoping that this major transition goes smoothly. This is a trip that we have planned and anticipated for a long time and very much look forward to! There will be numerous opportunities for child-like wonder at Disney World , not only for Brian, but also for my husband and I . While we will certainly record this momentous occasion through numerous pictures, I plan to be mindful of every experience, looking through my son’s eyes, and soak in each moment of his pure wonder and joy… It will also be an opportunity to go back to 1975 and be a kid all over again, unjaded, living in the moment, and allowing the fun experiences to bring me back to my own childhood. Let the magic begin and long may it remain afterwards in the heart and soul…❤️❤️

Thanks for reading! 😊

Pay no attention to the woman in the bed in a fetal position with a pillow over her head in the middle of the day. She probably just had a bad night’s sleep. It happens to all of us now and again, no big deal. Everyone also gets the blues, hey, it’s a part of life, and you move on….

Perhaps it’s more than just a of case of somnolence caused by a lack of sleep from the night before, especially when this pattern has been going on for several days, months, or even years. Activities that were once pleasurable mean nothing now . Isolation and retreat are the norm and provide a safe haven from interacting with others, lest they find out the truth about how and why this unwanted guest, aka: depression, has taken such a foothold in one’s life. It’s just too painful to discuss these details and nothing is going to change anyway…

The previous excerpt is based on a discussion that I had with another special needs parent a few months ago and this is exactly how she is feeling about her life at the moment with her child. She gave me permission to share these details in this forum, with the hope of shedding more light on a very important/personal issue, but wished to remain anonymous. She is a professional person and a single parent. You would never know how severely depressed she is, as she carries herself extremely well and is quite the power house in all areas of her life. However, the many years of raising her disabled child have really begun to take its toll. So many issues that will never end.. Losing hope and doesn’t care about herself or life, yet somehow very recently found the strength within to do something for herself, for the sake of her child. She is finally getting the professional help that she needs and hopes that both counseling and medication can help. She keeps asking herself why it took so long to reach these conclusions..

I so admire her courage and honesty in bringing up a topic that is still taboo and considered to be a weakness by some. Nothing could be further from the truth! But the stigma of a mental disorder in a “perfect” world can be hard to overcome..Depression is one of those topics that is avoided, minimized, and ignored. It doesn’t go well with accomplishments and accolades and generally makes people feel very uncomfortable. Yet, most of us will experience some form of it in our lives at some point. Isn’t it better to be aware of it? Special needs parents are especially susceptible and it makes perfect sense as to why: we love our children so much and take tremendous pride in who they are and just want to see them happy. Our kids are pure, beautiful souls who love unconditionally: we and the rest of the world can learn so much from our kids! But we underestimate the toll that special parenting takes on us emotionally, physically, mentally, and spiritually. As a matter of fact, we are so consumed by our child’s every need after so many years, that there is simply no time to tune into what is REALLY going on with OURSELVES, until BOOM- we hit the proverbial wall!

I have been a periodic purveyor of professional counseling services myself during difficult times in my life, including when Brian was a little boy and I was having a very hard time coping with his needs. I confess I did not feel comfortable discussing this with others at the time; I felt I would have been judged. Ultimately, the sage advice and support I received was helpful; it gave me perspective, and helped me to move on with my life. It doesn’t mean that I have all of the answers figured out for this special journey. As a matter of fact, I am often unsure and struggle with many decisions. I remind myself that I have choices and resources and am never alone. I also know where to go to get answers now if I need to. Sometimes that will be through close friends and family, myself, or a professional- and that’s OK! I still want to live my best life, even when I’m in emotional pain. I want to be present in the moment and experience all that it has to offer, something that I continue to work on every single day…

OK, so the cat is now out of the bag! I hope and pray that my friend’s testimony, as well as my own, may be of help to some special parent who may be struggling greatly with depression at the moment… Please know you are in very good company, there are resources, you are NOT alone, and there is always hope, the very thing that we provide daily for our kids.. It is now YOUR TURN to receive the love and support that you so freely give. ❤️❤️❤️

Until next time, thanks so much for reading! 😊

tBrian and I did our weekly food shopping yesterday at our local supermarket, a good way to practice some vocational skills in the community. Step by step, with lots of prompting and the promise of coveted cookies, Brian placed several items both in the shopping cart and on the belt at check-out. Overall, he did well, and I regained some confidence that we could possibly repeat this performance again. Our previous shopping experience had been cut short due to Brian’s behaviors after a brief time in the store that forced us to purchase the few items in the cart, then leave immediately thereafter. Yesterday was definitely a much better experience. Brian preferred to “socialize” with other customers and the employees, lol, but he ultimately got the job done.

Speaking of jobs…while reflecting further on our field trip to the Shop Rite, I was reminded of when I held my first official “job” at McDonalds at 16 years old, just a year older than Brian is right now, earning $2.00 per hour! Previously, I had delivered newspapers as a 11 year old, then started babysitting at 12 years old, but these jobs were hardly work compared to McDonalds! Boy, did we kids work for that minimum wage! I mainly worked the cash register, but also cooked burgers in the back, made shakes and fries, as well as stocking the freezer and taking out the garbage. This experience set the stage for a strong work ethic and the acquisition of a skill set that I found to be transferable to future careers/jobs. You had to be productive in this setting; there was really no time to goof off ( though we did that also in the crew break room, like inhaling helium from the Ronald McDonald helium dispenser, then talking like Alvin and the Chipmunks, lol!) As one of our managers always said, ” if you have time to lean, then it’s time to clean”- what a tyrant, lol!

Brian will never have these type of work experiences due to his extensive disabilities, but it is of paramount importance that he too, is productive in SOME way after his formal education ends. Many families share the same goal for their special children- these young adults must be engaged in something, be productive in some way, after school is over, as the alternative of doing nothing is like the kiss of death for our kids (and we parents). Post 21 programs are still emerging, but the concern is that the supply will not keep up with the demand. There are more children diagnosed with special needs (especially with autism) then ever before due to both awareness and earlier identification. I recently read that only 15% of special need student graduates have jobs, most of which are part time. That means 85% of these young adults are not working or doing anything. 🙁 My husband says that I obsess too much over this-with these type of dire statistics, it’s hard not to! Jim also says that we still have almost 7 years left until Brian finishes school. While that may be true, time will pass quicker than we think, and job/ program options should ideally be predetermined before graduation- but what exactly will those options be at that time?

This remains to be seen and when I think about it for too long, I get anxious and fear that Brian may be part of the 85% who will be at home because his needs are so many and complex and there won’t be any jobs or programs to accommodate those needs. I know that I am actually in very good company regarding this concern, it’s sort of like the elephant in the room that no one wants to point out, yet we are are all painfully aware of its existence… In instances like this, there is a good reason why the saying. ” one day at a time” is so important, as all of us struggle in our quest to find job solutions for our kids. While Brian’s school does have a post 21 program, there are no guarantees that he would be accepted into it when he graduates.

I keep telling myself that ultimately Brian will be somewhere, doing something, but it can’t just be anything, it has to be the right thing… Something that will match his specific skill set and needs, with the proper supports and personnel. Things that are costly and good staff can be hard to find. Here I go with the obsessing again….

I love hearing about or reading the various stories of employers hiring disabled workers for the service industry, like coffee shops or restaurants, both locally and nationwide. There are also more special schools who offer ” after 21 programs” ( or will in the future) because of the present and future need for them. Local businesses are also more amenable to hiring disabled workers or outsourcing work for them to do. This is definitely progress, with hopefully more to come… I can personally envision Brian as a Greeter at Walmart, or a host at a restaurant, where he greets customers at the door and shows them to their tables. Brian’s sociable nature would be a good match for such positions- we would just have to make sure that he gets back to work and doesn’t sit down or want to leave with the customers, lol!

We will have to see what happens and be open to job opportunities, whether to receive or possibly create them ourselves, and that, of course, is the scary part.. A good friend once shared with me: ” I don’t know what the future holds, but I know who holds the future”…It is my belief that God will continue to be faithful in providing for ALL of Brian’s needs, despite my fear and lack of faith at times. So far, God’s provision track record has been pretty darn good in Brian’s life, and mine too, for that matter, even if the timing was not what we wanted or expected. Ultimately, everything will work out… Even our Coat of Arms/Family Crest for “Boyle” ( my maiden name) is the oak tree with the motto: “The Lord Will Provide”- I think that is a clear sign…

May our special children experience the fullness of God’s provisions according to their EVERY need, now and always…Until we meet again, thanks for reading! 😊❤️

Brian will celebrate his 15th birthday this weekend, another milestone in the life of our son who both inspires and scares us at the same time! The reasons for this inspiration are many: the medical/neurological challenges that Brian has bravely (and continues to) overcome, his persistence in communication, (despite his inability to speak), and his overall resilience to take each day as it comes, no questions asked- I can learn so much from Brian in this regard, though I will always ask a ton of questions! 😊

The scary part primarily has to do with trust, specifically, trusting others and ourselves, as we navigate the often complicated, (but never boring), thing called Life With Brian. One of the most valuable lessons that I have learned over the last 15 years is that special needs parenting is not for perfectionists. Any notions of what I perceived this experience would be like when Brian was first born, and up until today, has been thrown out the window. “Progress, Not Perfection” has slowly taken root and has become my mantra, particularly when my own sensibilities are challenged, (which is most days). In the long run, it’s a better way for me to live so that I can retain my sanity, but getting to this place of acceptance has taken years of heartache, mistakes, and self-forgiveness.

It’s not easy to trust….Let’s face it, our worlds were turned upside down when we first heard the despairing news that our children were diagnosed with a disability. In our case, it was when Brian was first born, and then again with the autism diagnosis at 30 months old. Everyone of us has a story- we can pinpoint THAT specific moment when we learned that the life we had hoped for our child was not to be…It is something we will always remember and it has changed us forever… Nevertheless, we have learned over time to accept and adapt as special needs parenting requires us to. We take cues from our children and our level of happiness is exactly proportional to theirs. We advocate feverishly and do our very best to provide a good life for them. We give our kids every conceivable life experience, as best as our personal circumstances allow us to, for their mental, social, educational, and physical well-being. We hope that these opportunities will improve outcomes in all domains, and in the process, rely on a lot of people to help our kids achieve these goals.

We have to learn to trust those who take care of our children, not only for our kids optimal development, but more importantly, so that our children can practice some level of independence away from us. Easier said then done for sure, but it’s absolutely imperative! Their vulnerability automatically suggests that we should protect them, and of course we need to do that, but preferably not inside a vacuum. We must give our children their own wings to fly for the sake of their own independence, whatever that will mean for them, despite how that makes us feel.

Gulp- that is so hard to do!! I have concluded that I will never have this part mastered, in fact, I often “fake it, until I make it”, something like being an actor on a grand stage. I don’t like feeling anxious or not in control. I do worry every time Brian tries a new activity outside of the home- is he going to like it? How about transitional/behavioral issues? How about the folks working with him, will they really understand what to do and implement what I have suggested? Most of Brian’s social and educational experiences have been positive, but not all, despite the copious amount of ” Brian details”. We try to mitigate the frequency of these negative situations ever happening with our best efforts, but life is not perfect, nor are people and circumstances. This is when learning to let go of what you can’t control comes in VERY handy. Life is filled with joy, but also disappointments and sadness, something that our special kids will also need help in learning to cope with.

When I look back on Brian’s life so far, there have been countless examples of situations where Jim and I had absolutely no other choice than to trust that somehow, we would get through whatever the challenge was. I’m sure you can relate! This often requires taking the time that we needed to trust those who would take care of our son during those challenges, most still ongoing, taking little baby steps… From the school bus at 4 years old, then day camp, to overnight camp. And yes, I was the crazy Mom who followed the bus to school the first week Brian was on it! I also asked the overnight Camp director the first year if I could pick Brian up daily at 5pm, lol! It is these very same experiences that have given us the courage over time to face the inevitable challenges of the present and hopefully the future- and that includes our children’s independence, an important issue that will remain long after we parents are gone. Which is why it is so important for our kids to practice these independent skills in any shape or form right now, especially away from us, in order to set the stage for later on..

If Brian had the words, I have a feeling he would say: ” stop worrying so much” and “I wish I didn’t have to do chores”, lol! His facial expressions and heavy sighs at times speak volumes to me, especially since the onset of puberty, what a teen! Much to my chagrin, my baby is growing up, (Brian proudly displays his photo ID from Motor Vehicles in the picture below) and so must I, for our mutual independence clearly depends on it- it’s the best gift I can ever hope to give my son.

Until we meet again, thanks for reading! 😊

I can’t think of a blog title that is more fitting than this one for Brian. Perhaps in his next life, he will return as a fish. If Brian had any say in the matter, he would wholeheartedly agree that this is a fantastic idea! 😊👍🏻

I believe Brian’s love affair with water goes way back in the womb, where there was a severe shortage of amniotic fluid. In fact, my uterus was ultimately not baby-friendly- Brian stopped growing in-utero due to a condition called intra-uterine growth restriction ( IUGR) when I was 7 months pregnant. I was immediately put on bedrest in the hospital for the duration of the pregnancy, and was able to eat to my heart’s content. In fact, I gained over 20 pounds in the month I was there, all the while having my amniotic fluid (amongst many other things), very carefully monitored.

Thankfully, both Brian and I started to gain weight and were moving along very nicely until the day of The Double Muffin Incident- I will return to this shortly…

As you can imagine, the same 7 dinners that were being served weekly were becoming quite old, especially the Friday Fish sticks ( this was a Catholic hospital). By Week 4, I was REALLY fed up with this menu, especially the fish sticks. It was my husband’s great misfortune that 4th Friday evening when he came to see me after work, to visit a crazed woman who simply said: ” F—-k these fish sticks, go get me a Whopper NOW! Don’t forget the extra large fries and the largest chocolate shake known to man- RUN!!!” I scared the s—t out of this poor man- without a word- he turned around- and RAN to the nearest Burger King for my sake and his! This is what can happen when one is on bedrest for a little too long, lol! It truly was the best food of the pregnancy, lol! 🤣

Four days later, Tuesday, 8/25/03, after

Turkey/Lettuce and Tomatoe on Rye Tuesday, I had a craving for a large blueberry muffin- make that 2 large muffins after lunch- they were so delicious! Shortly thereafter, I had my daily visit to the antenatal testing unit, where an ultrasound would be performed to see how Brian was doing. I noticed that my doctor was looking at the ultrasound quite intently. “When did you eat last?”, my doctor inquired. I told him it had been 30 minutes prior. He told me that Brian would be born that evening via c-section because my amniotic fluid finally hit an all-time low. Poor little guy- no wonder he loves water so much now, as he was deprived in the womb. A very scary time, as you can imagine, and truly a miracle that Brian was born without additional complications at 36 weeks old, exactly 5 lbs. He arrived into the world that evening at 8:30pm with a set of lungs that worked quite well ( yay for lung steroids!) and an affinity for sponge baths, eventually regular baths, and now showers, ever since! Brian’s obsession with water truly goes way back, which is why the special needs surf camps mean so much to him- his joy and exuberance is made complete whenever he is in the water!

Water is also one of the few activities that Brian truly enjoys. I think this is why this passion supersedes any fear of the ocean or a pool. He can remarkably hold his breath and doesn’t mind going under water. We have no idea how he learned to do that or why he is not afraid. Brian was knocked off his surfboard a few times last week in the ocean due to approaching hide tide and went under the water in the flash of an eye! He quickly rose to the surface, vocalizing his sheer joy, like it was the best thing that ever happened to him! I actually believe Brian would say exactly that if he could tell us…

Brian’s hobbies/interests are very limited at this time, though you never know when this might change… in the meantime, I am glad that he has something that he can truly call his own, an activity that is healthy, refreshing, and calming, perfect for his sensory-seeking soul….

Like all of the wonderful people who have been placed in Brian’s life, the volunteers who run the special needs surf camps are another beautiful group of folks who make smiles, squeals of delight, and deep sleep possible for our kids (and we parents) at the end of a wonderful water extravaganza! How truly blessed are our children for having these incredible experiences , while adding to the rich tapestry of their lives. I will be reminded of this fact every time I see Brian’s happy spirit soar to the heavens while surfing (or splashing) in his Happiest Place on earth. 💦 💦 💦 🏄 🏄 🏄 My joy is also complete! ❤️❤️

Until we meet again, thanks for reading. 😊

We waited a long time for this… over 12 years to be exact! It started when Brian was about 2.5 years old and has gone on ever since: timed toilet training. Brian wasn’t even walking at the time! Jim or I would initially seat him on the “poddy chair”, (then eventually the toilet seat when he got bigger) after each snack and meal, with the hopes that he would go. Occasionally there was a success, and when there was, we made a huge deal of it. There was lots of positive reinforcement given , as well as bits of a favorite food that was reserved only for successful voiding or pooping. While we realized that toilet training would naturally take longer in a child with disabilities, we figured that Brian would just need extra time and repetition of this skill, just like all of the other life skills. I had guessed that Brian would master toileting on his own by age 6- for some reason, I just doubled the time that it would take an average typical child. I couldn’t have been more wrong.

We learned over time that going to the bathroom is actually a complex motor planning process that is comprised of several steps. One also has to make sure that there are no medical issues going on with their child, that they actually have the ability to control their bladder and bowel, while being able to go when appropriate. Medications or medical conditions can clearly effect these things. Kids have to be physically ready too. We realize in retrospect that Brian was not ready at all in the beginning, though I still think it was good to have him go through the motions of toileting at that time.

Children with Down syndrome and autism generally require tons of repetition with most skills before it becomes imprinted on the brain. I just didn’t think it would take almost 13 years in this instance! Behaviors, especially self-control (or not) is a also a huge piece of this puzzle, especially once our kids understand the purpose of toileting, as long as medical issues are ruled out first. For non-verbal children especially, using the bathroom or not is a means of control for them, in a world where so much is out of their control…

Brian’s initial journey was one of many accidents when he was little, then this gradually changed to the other extreme, “holding at all costs”, especially during school hours. He would still have accidents, but they were less frequent over time and NOT going, became more the norm. We were always so worried that he would damage his kidneys somehow and he was already more prone towards being constipated ( not being a big beverage guy didn’t help either), but we were reassured by physicians that nothing would be medically effected: keep offering juice and water, more fiber, more practice, more time….boy, this whole experience was like watching the grass grow!

I did have angst and struggle with Brian’s toileting for a long time, especially after I had to bring him to the ER twice because he held his urine for over 15 hours. Bloodwork, kidney ultrasound and exams were unremarkable, then Brian would FINALLY go!! Perhaps Brian understood when the attending physician mentioned something about the insertion of a catheter- he went almost immediately after that. 😳 It was the pediatric nephrologist in the end who assured me ( and reminded me) that Brian continues to be medically fine, she has seen these shenanigans many times over with other patients , keep plugging away, and, when Brian decides he is ready to use the bathroom independently, he will let us know. Of course we still didn’t know exactly when this would be, and after a long while, we were getting worn down by the suspense and stress of it all. I had to always build in Extra Bathroom Time (EBT), to make sure any opportunities weren’t missed. Add EBT to ETT (Extra Transition Time), for all daily activities, and time moves very slowly…sigh 😩

Brian decided just a few months ago that he was finally ready to start using the bathroom at school on a more regular basis. It started with once a week, to twice a week, and now he goes almost daily. He is also requesting to use the bathroom via the speech app on his iPad independently and is heading towards the bathroom on his own without a verbal reminder or a physical prompt. Why Brian decided that he is ready now, I have no idea, but I’m sure grateful he has reached this milestone! Brian still has a ways to go- he doesn’t know how to wipe himself. He still wears overnight diapers and still has accidents occasionally. Sometimes he will forget to wash his hands. Or pull up his pants. Home and school will continue to work on these things too, but it is definite progress… I am determined before I leave this earth that Brian will have the whole bathroom business mastered, because it is that important of a life skill. Brian is almost 15 years old, and while I had hoped that bathroom skills would have been achieved much sooner, I know he WILL get there, in his own time, as he has proven over and over again. Brian communicates clearly now that he is “The Bathroom Boss”, capable, and with a proven track record in this domain, with more skills to come..perhaps not on my schedule, but this is not about me anyway. 😊

Until we meet again, thanks for reading! 😊❤️

A warning to the reader: today is a dark day on the blog. Please feel free not to read any further if you prefer something more upbeat- come back instead next time when I resume with a more hopeful and humorous blog….

Today’s blog will address the physical exhaustion, as well as the emotional and mental pain that are as much a part of the special needs parenting experience, as milestones and progress are. Most of my days are comprised with extremes of both: elation and despair, along with great joy and intense sadness. The “highs are higher” and the “lows are lower” in our world and always will be. I rarely discuss the despairing details of these days because they are just too painful… I will often detach from the sorrow , redirect myself to happier places, and keep moving, because that’s what special needs parents are supposed to do and should do when the chronic challenges of their children’s disabilities threatens to destroy their joy and sanity, right? It’s the “dark side” of our daily experience that we don’t really discuss, but for the sake of our mental health and as a reality check, we must acknowledge it, warts and all. I just choose to do so in this forum, as writing helps me to process my feelings and grief better than actually speaking about it. A good cry is very cathartic too and I do it often.

A friend ( with typical children) had recently told me what an “amazing Mom” I am to Brian and that I am always so “upbeat and positive”. ” I don’t know how you do it” she said, ” and you never complain; Brian is so lucky to have you and Jim”.

Well, the truth is, very often I don’t know how I do it either. And I do complain- a lot! There are also many days when I’m quite sad and depressed. I think a lot of this has to do with the realization that Brian will always require intensive assistance with every aspect of his life, for the rest of his life. Period. I honestly never thought this would be the case. Sure, I knew that some level of support would always be necessary, but it’s the DEGREE of support that I’m referring to. This revelation hit me very recently; I guess I’m a slow learner…

The physical, mental, and emotional toll as a result of raising our kids is cumulative as time goes on. I try to find ways to manage the stress, sadness, and fears. I want to be positive and try to accept things for what they are. I continually seek ways to improve Brian’s life, while taking care of myself. Many days I ask God for endurance, peace, and just a good nights sleep! Sure, Brian has and continues to make progress. I like to share these milestones with family and friends. It’s a positive thing to do and it’s also great to have a historical record of how far he has come along. But there’s also the other side of the coin: the perpetual perseverative behaviors: the incessant vocalizations, the door banging, and the light flickering shenanigans that have gone on for years and probably always will… Or the ongoing medical concerns, the paperwork, and the communication/interaction with the legions of people who you depend on to help you help your child. I personally struggle with the physical care-taking most of all- it’s so repetitious with no end in sight…I have often lost my mind over the years with all of this, but somehow keep finding it! I hope I never lose it for good!

Like our children, we parents are resilient and ultimately carry on like we always do, for what choice do we really have? I just wish for all of our sakes that it wasn’t so hard and that we could become younger and stronger as our kids get older and bigger. I also pray for the grace and courage each day to be Brian’s Mom, especially when I don’t feel up to the task. That’s when Divine Intervention has stepped in through the wonderful people placed in Brian’s life. I just wish we didn’t have to be so dependent on so many people…

The special needs journey with our kids will always be a mixture of ups and downs, and will require a LOT of patience, perseverance, and hope. I can only take one day at a time, one foot in front of the other, in the present moment.. that’s more than enough for me…otherwise, I get too easily overwhelmed and afraid of the future. I have enough to deal with today.

May we all experience the same love, support, and compassion for ourselves that we give so freely to our children. We really can’t parent our kids for the duration without these things! Until we meet again, thanks for reading! ❤️❤️

There is nothing like getting together with old friends who have known you for years, long before you had children or got married. These folks knew you in your “former life”, when you were young, when life was less complicated, and when you had the freedom to do what you want, when you wanted to. Ahh, the joys of youth and the adventures that were shared! It’s amazing how those precious moments in time can be immediately recalled to the mind’s eye with the fondest of memories. Inevitably, seasons in life come and go and responsibilities replace most of the spontaneity of years ago. Sometimes I think about those old days, ( especially when I’m having a tough week with Brian ) and wish that I could travel again like I used to. It’s ironic to me that my world has changed over the years from traveling internationally to now traveling mostly around town! Of course it’s all of my own choosing and while I honestly wouldn’t change anything -(except of course for Brian’s Down syndrome and autism- if I had a magic wand, I would wave it and banish these disabilities away forever- who wouldn’t want their child’s life to be free of disabilities?) I still don’t want to leave my former life totally behind. It’s still very much a part of who I am today and always will be. So, how does one maintain a balance between both the old and current worlds? One way is by making a point to maintain those valuable friendships from long ago, even if it means getting together just once a year. It is definitely a rarity though – some friends are only meant to be in your life for a particular season in time. People can change for many reasons and are often shaped by permanent, life-altering experiences ( like having a special needs child). Yet, at the core there is still that person who is a unique individual with their own needs that require fulfillment. I have found this especially true of myself in recent years. Special Needs Parents have a life time of care taking ahead of them with their children – this is quite overwhelming for me personally to think about, so I really try to “redirect” myself when I start to go there. It doesn’t mean that I don’t care or it’s not constantly on my mind, but I can’t control the future ( I’ve tried on several occasions and I can tell you with absolute certainty that it doesn’t work!), and I only have this day, hour, moment… I have found renewed sanity when I focus on my own self-care, one moment at a time, with the emphasis on SELF CARE! It is an absolute and daily REQUIREMENT for a lifetime of caretaking. Ignoring our own needs for the sake of our kids or others is actually a disservice to both them and ourselves- you can’t help your children or other people if you don’t take care of yourself- period! We need to somehow negotiate ways and create opportunities for self-care/ respite to happen. It will require planning and help from others. It is not always easy to do and can be difficult to find the help, but I have also found that people in our lives are not always aware of what we need, so we have to speak up and tell them! This is exactly what I told my husband, Jim, hence, the Gal Pal Excursion to Camp Wahoooo last week with my pals from People Express Airlines. I really needed a respite with old friends and a change in my daily routine! Our often repetitious routines can be mentally and physically exhausting; I know I desperately needed to recharge my batteries. Even being on a plane by myself where I couldn’t be reached was a treat in itself, though it took me a while to decompress and relax…

I have had the privilege and joy of knowing my airline girlfriends for over 34 years! Being with these fabulous ladies brings out every playful impulse, belly laughs, and a sense of humor that is so hilarious- I am 20- something all over again! The five of us met in Arkansas last week at our friend’s lake Home ( flying in from 5 different states) and BAM!- talk about immediately connecting just like it was years ago- it is truly a very special gift that we all share. We proceeded to have the time of our lives, exploring new sights, soaking up the sun on a beautiful lake, all the while laughing so hard that my stomach muscles hurt! I am so grateful for these gal pals and the power of our friendships, as this sustains me long after we have parted ways and especially during lonely and difficult times. Loyal Gal Pals can empower us in a variety of uplifting and encouraging ways. Here is what I have learned from mine:

1. Life is short- tomorrow is not promised, so laugh loud and often with all of your heart and soul.

2. You can do anything or go anywhere when someone truly believes in you and what you are capable of.

3. Generosity of heart and a giving spirit knows absolutely no bounds and can never be outdone.

4. Listening to one another and validating concerns, as well as celebrating each other’s accomplishments with genuine support and gladness is a priceless gift.

5. Humor and hope make all of life’s moments more manageable, meaningful and joyful, especially when shared!

Whether your respite is just for a few hours or a few days, make sure to take it either alone, with friends, or whoever you want to spend that time with! You are worth it, you need it, repeat!! All of us need to find joy and laughter in the hardship of raising a child with special needs. It seems paradoxical that this is even possible, but it can be so. We need to become empowered so that we have the courage and conviction to move in the right direction. It can be very difficult to arrange for respite, sometimes we are so tired of being tired, but we must- somehow- for our mental health and sanity. Most importantly, our kids will thank us for it! Until next time, thanks for reading! 😊