They called us “One In A Hundred”. For every 100 applicants interviewed by the now defunct People Express Airlines (PEX) of the 1980s, only 1 of us were hired. We were that extraordinary! We were Customer Service Managers (CSMs) who flew as flight attendants, worked as ground personnel, and held  many other internal positions within the company. We worked hard, but played hard too. Many of us were fresh out of college, seeking adventure, travel, and business opportunities. We accomplished all of that and developed a business skill set that was eventually transferable to other careers. People Express truly left a lasting impression on the hearts of the employees who worked there, as evidenced by the 30 year reunion of almost 1000 people that took place this weekend in Newark, NJ, where the whole journey began.

Deregulation of the airline industry back in the late ’70s made it possible for everyone to fly, and the launch of People Express in 1981 made affordable air fares possible. Eventually, over expansion and competitive airfares brought on the demise of People Express in 1987, but many of the friendships that were established back then have remained strongly intact today. Our circle of “gal pals” is just one of the many groups of friends who still keep in touch all these years later. We have been able to meet in various locations throughout the country from time to time over these past 3 decades. I am always amazed how we pick up exactly where we last left off! I revert back to that silly 20-something, whenever I am with these wonderful ladies. All of us have witnessed both good and bad times in each other’s lives and have been there with  loving support. We laugh  until we cry and make the most mundane moments hilarious ones. We are forever friends, the gift that just keeps on giving! It was so wonderful to also see many other  former colleagues and to reminisce about old times with them this weekend.  I never knew I had so many words in me! This moment in time was as historical as the airline itself and I’m so glad that I could be a part of it. 

Of course, life is so different now. I used to travel around the world and now I mostly drive around town! Careers and priorities have changed, just like the seasons. I never would have guessed back 30 years ago what my life would be like today. I suppose that is true for most special needs families. We forget in the daily challenges of raising our kids that we were once single and had a totally different life before we had them. The People Express reunion this weekend reminded me that it is important to acknowledge and honor that part of our lives from time to time, a very vital part of the “self care” that we NEED!  I was able to play and take a break from home responsibilities this weekend because of my husband and niece. I am truly grateful for that. It was a huge gift and one that I throughly enjoyed. It’s actually the best gift that a special needs family can receive- time away to reconnect with the people, places, and things that give them joy.

Don Burr, the founder of People Express,  always believed in a “People First” philosophy regarding both customers and employees. We, as special needs parents, live  this philosophy every single day with our children. Like People Express CSMs, we wear many hats  and are expected to play multiple roles on behalf of our kids. Our hours “on the job” are also very long and in our world, can really wear us down! It’s a very difficult part of just what we do, because we love our kids and they are depending on us. But what about ourselves? Aren’t we “people first” too?!

Every special needs family I know has a unique set of circunstances with their disabled children. Some families have  much more support and opportunities than others to take care of themselves, a spectrum of its own that varies in each situation. Some families also have more than their fair share of challenges with no support whatsoever. Weekends away are never a possibility and they are often the people who need it the most. 😞  I wish there was a solution, but there is no perfect one. In the meantime, I  believe special needs awareness and involvement should continue within extended families and communities, so that the needs can be identified of those who require a break, whether it be for a few hours or a few days. I can assure you, that the “people first” investment of special needs parents will reap major benefits for not only their physical and mental well being, but also for  those of their children. It’s always easier to take care of your child when you’ve had a break, a good night’s sleep, and an adult beverage- the perfect trifecta! As the saying goes, “put your oxygen mask on first, before you place one on the person next to you”. Once a flight attendant, always a flight attendant. 🤣

Until we meet again, thanks for reading!😊

• While conducting a business transaction for Brian’s special needs trust the other day, the bank teller assisting me commented how tragic it is that Brian was born disabled-whoa! I was not expecting this at all!  How often have you heard someone say that?!

I have learned over time, by my own mistakes, and with experience,  to consider and process what is said when someone makes a statement about Brian’s special needs, THEN respond.  I was prepared to address the comment, but wanted to do so in a way that was informative, without being defensive. Sometimes in the past I have reacted, instead of being reflective first, depending on the day, a bad night’s sleep, or whatever the Challenge Dujour was. 

I first showed the teller a picture of my beautiful boy, speaking of his many virtues, despite the hardships and challenges that his disabilities bring. I could see by this woman’s reaction that she honestly had no idea that a marriage of disability and happiness was even remotely possible. She was teary-eyed when she confessed that she didn’t realize that blessings could coexist with disabilities. It was a powerful moment for both of us, as I experienced my own reminder of how special our kids truly are. They have a lot to teach the world about who they are, what they CAN do,  and what they give so freely:  unconditional love, total trust, and a child-like wonder that warms the heart and inspires the soul. It took a long time for me to really believe these things about Brian, as once upon a time, I was more focused on his limitations, instead of the wonderful person that he is. 

When Brian was first born, I, like the bank teller, also felt that his disability of Down syndrome was a tragedy. I was overwhelmed and felt totally unprepared, despite being a special educator. I also felt out of control, out of my league, and certainly out of my comfort zone. I had really hit a low point when Brian had open heart surgery at 3 months old. The surgery was the longest 4 hours of our lives and I remember subconsciously not wanting to hand Brian over to the surgical nurse prior to bringing him into the  OR. My husband had to gently encourage me to release our baby, which began the surreal 9 day journey in the hospital. The surgery  itself was a success, but those early years were just a whirlwind of  one medical or developmental challenge after another…

 It’s hard to believe today that Brian was once so vulnerable and helpless, this strong young man who now eats nonstop!  His remarkable recovery  from the heart surgery and eventual discharge from the hospital  was the first of many examples of Brian’s strength and resilience that he has and continues to demonstrate each day. 

When Brian was diagnosed with autism at 30 months old,  we were absolutely devastated by this additional diagnosis, but at least we finally had some answers to the questions that had plagued us for  several months regarding Brian’s unique development. It has been through both joyful times  and some of these  most difficult trials over the past 14 years that my heart and perspective have been gradually transformed for the better. 

Along the way, we have met wonderful families and professionals who share their experience, strength, and hope with us. These gifts have sustained us through hard times and have given us great opportunities to socialize and have fun through a plethora of activities. Brian lives a good life that has meaning for him and gives him joy! These are things I like to share with those who are curious to know who Brian is and  what our dynamic as a family is like. I appreciate the opportunity “to spread the word’ that our  son is a person first, with preferences, emotions, and abilities, just like everyone else!

While I may be teaching others a lesson or two about our son whenever the opportunity presents itself, Brian teaches me daily through his hugs, wants,  joy, fear, transition troubles, sensory issues, etc.  the most important life lesson: how to love and to be loved! My son is not the sum of his disabilities; he is a gift from God and my greatest teacher. Brian’s joy is contagious and his hugs are as huge as his heart. He lives and loves authentically, he is my hero and my heart…❤️❤️❤️ That’s what I want the world to know!! 

Until next time, thanks for reading! 😊 . 

 

Brian and I just returned from a fun weekend at the Great Wolf Lodge in the Poconos, PA. If you have never been, I highly recommend it- Water Nirvana everywhere! Brian couldn’t get enough and would still be there if I didn’t physically prompt him to leave! 🤣 We were waterlogged and weary by the end of Day 3 , but so happy for the opportunity to try something new. I was so proud of Brian for handling like a pro most of  the changes and transitions that an experience like this offers.  You just never know how a major change in routine and environment is actually going to go down until it’s showtime! These factors can be a major challenge  and very stressful for special needs families. I was on my own for the first time with Brian, as Jim was away in Japan on company business, so my anxiety level was quite elevated. Brian is a young man now, taller and stronger, and  not as easy to handle, especially during a meltdown. Predictably, the initial transition into the facility was difficult and overwhelming for a few minutes, but the  supportive Lodge staff, amenities, and  promises of a gizzillion gold fish crackers, iPad privileges, and swimming  eventually helped and WE WERE IN!!! Phew!

During the course of our stay, we met up with other special needs families, as well as families with typical children. It was such a great experience to meet folks from the tristate area who share certain commonalities, and just as interesting to meet others in which there were no similarities whatsoever. It was during one of Brian’s difficult transitional moments going from one part of the water park to the other that I was approached by a woman who I quickly surmised had a very different journey than mine. Our conversation went something like this:

She: ” I’ve been watching you in awe  for the past few minutes and don’t know how you do it”.

Me: ” Do what?”

She: “Manage your son like you do.”He is so adorable, but strong, that’s got to be tough!” Are you here alone?” ” I give you a lot of credit, I could never handle what you have to, you’re such a great Mom”.

Me: ” Thank you, I’m sure your right about that, excuse me, have a nice day”.

I have had similar conversations periodically in the past with other parents. Most special needs families that I know have had them too. I don’t fault people for their fascination with Brian and I understand why they ask a lot of questions. He is a very cute and curious creature! But this time, it was the “pity pat” on the shoulder and The Look, you know what I mean, it’s the ” I feel so sorry for you”- that  triggered very unexpectedly those feelings of loss and sadness  that  I thought I had resolved a long time ago….

Everyone has or will face major loss at some point in their life. Losses can vary in size and scope and are painful. Losses create sorrow, cause grief, and can test our very character. Brian’s arrival into the world was a simultaneous mix of elation and deep sadness. Delighted to blessed with such a beautiful boy, yet grieving the loss of the dream that we had hoped for. Feelings of guilt and shame for even saying such things. Oh, those early days especially were a cesspool of fear, doubt, and anger- why him? Why us? Overwhelmed by the medical needs of  our baby who needed open heart surgery and so much more… those losses were deep and profound. So many times I just didn’t want to feel the pain anymore, so I immersed myself in the world of being Brian’s Advocate and Medical Director. I didn’t have time to feel sorry for myself, there was just too much to do.

We eventually moved to our current town. Eighteen months later, my husband lost his job and was out of full time work for over 3 years.  I was diagnosed with colon cancer less than a year after Jim lost his job. Brian had severe sensory issues back then and was having difficulty settling in at school. Multiple school visits, conference calls, surgery, chemo, and job interviews. No time to process these losses, too much to do!! Keep on keeping on, hang in there, keep the faith,  and all those other platitudes that are well-intended and are meant to be helpful. 

Predictably, the “crash and burn” phase inevitably occured, because major losses in life can not ultimately be ignored. You can run away from them, play hide and seek with them, but eventually the grief from the losses will get you and of course it’s at the most unexpected and least desirable time. Funny how that works. My showdown with grief and loss occured long after Jim had finally landed a good job. Brian was in an appropriate school placement, and my cancer was history. It was a dark,  terrifying depressing time, like being in a deep hole with no lifeline. I thank God for counselors and medications! Eventually  the sun came out again, but the struggle never really goes away..

There are several lessons I have and continue to learn about losses and grief: 1. Both are an inescapable part of life 2. Don’t deny them, lest you pay a heavy price, 3. You are stronger than you realize, 4. You will be refined in the fiery furnace with a new armor of compassion for others, 5. You may lose an emotional battle, but you will ultimately win the war! 6.  Grief can easily be triggered when you are reminded of old losses, but these moments are also an opportunity to see how far along you have come despite them, 7. You never walk alone- God and His resources are there to help you, now and always…

On a final note, I have learned through experience and mistakes what NOT to say when I see others going through a major loss:

1. I understand what you are going through-( how is that even possible?)

2. Everything will work out just fine-(Well,  that’s not always true. Life is sometimes not fair).

3. Try not to worry- give me a call if you need anything- Of course, you worry, you’re human! And the person struggling will never call, by the way.

It’s understood when people say these things that they have the best of intentions and don’t know exactly what to say. Consider the following in lieu of platitudes:

How can I help? What did you need? Let’s make a date to get together. I can watch your kids on…. I’m going to call you next week,  send cards, etc,  anything and everything that involves self-care for healing for the person who is struggling with loss. Finally, just listening helps so much! You don’t have to have the perfect answer to the loss, just a willing ear to listen and a compassionate spirit to understand- but please, no pity!!

All of us will need support through losses in life,  regardless of who we are. Those of us with special children are more susceptible, but no one is immune from the grief that accompanies  losses. It is a question of when and how we respond to the grief that will determine how we effectively cope. Better sooner than later for sure! Self care will always be paramount for the long haul. When others support us in this quest, and visa versa, all of us are stronger and more able to weather the challenges that will be thrown our way. I know I can’t live my best life otherwise…

Thanks for reading, until we meet again…❤️😘😊

It has been a long time since I last blogged, and I have learned some very valuable life lessons during my 7 month hiatus.  Perhaps some of these will resonate with you?  

Seize the day with all of your mind, heart, and soul. 

Grab opportunities that will make your best life.

Hold the memories close and your family even closer.

Delight in your children, and treasure every moment you may have with them.

Life will change and will often not make any sense. 

Trials refine us, but don’t define us. 

God is always faithful, even when we are not. 

Our actions are our bond and faith is not just a five letter word. 

Life on this earth is just the dress rehearsal, not the live performance. 

A sense of humor is vital for sanity.

My son, Brian, is my heart and the best teacher I have ever had!!

Until we meet again… be blessed and laugh often!! 🤣🤣❤️😘

It’s hard to believe that Brian was officially diagnosed with autism over 10 years ago when he was just 2 years old. Our heads were spinning then and often still do now. Some things have changed during this time, yet so much has remained the same. The highs are still higher and the lows are still lower when it comes to the achievements, disappointments, rejections, and struggles that Brian continues to go through and always will.

 We thought that we initially were in the “Welcome To Holland” group, a poem written about what the experience is like having a child with Down syndrome. It is described as different place, but just as rewarding as any parenting experience could be.  But Brian’s developmental track indicated more than the average challenges associated with Down syndrome, a realization that occurred over time and too apparent to ignore. He was very different compared to his peers with Down syndrome. It was very painful to watch and most heartbreaking the night when I found several computer links after typing the key words ” Down syndrome” and “Autism”. I honestly didn’t expect to find anything,  yet the Mother Instinct that something was amiss was spot on. Of course this discovery eventually lead us to the DS/Autism clinic at the Kennedy Krieger Institute in Baltimore and to the wonderful Dr. George Capone. We were connected to other families in the same predicament over time. Brian received additional therapeutic and educational services as a result. Social media has greatly impacted the way special needs families can connect and support each other. There are lots of recreational activities for the special needs community, providing social opportunities for our kids and parents, thanks to many good-hearted folks. Each of these gifts have been a blessing and sustain me, especially in the challenging times. But make no mistake- our experience  with Brian’s dual diagnosis is not “Welcome To Holland” rather, as one Mom said, it can often be described as “Welcome To Beirut”, because of the many challenges that autism presents in conjunction with Down syndrome.

One of the main lessons that I have continued to learn in this  past decade is to have very flexible expectations, of Brian, of  those who interact with him on a daily basis, and of myself. However, it is often hard to do! Hard to wait, hard to accept things sometimes the way they are, hard to accept that some things will never change. I find that certain events, holidays, milestones, etc. will trigger emotions in me that I thought I had resolved long ago, bringing me back to the original feelings I had back then, still so fresh, raw, and painful.

Of course it’s a different story when Brian can learn skills. There are specific expectations for that, the bar needs to be raised and held high until he meets them. It takes a lot of patience, people, and persistence to make this happen, step by step, and  the bureaucracy/resistance and slow pace of the process can often be disheartening and exhausting. This is our son’s burden and ours to share with him on this long and winding road, so what to do? How do we make it for the long run?

I am still trying to figure out the necessary components of my “mental and physical endurance kit”. I recognize more recently as Brian is now an adolescent, how important  this kit is to have, but not just during this particular (very trying) season of life, but for the rest of his life and ours. He is getting bigger and we are getting older. I always pray to have the physical and mental strength to care for Brian and to trust God for his future. I struggle- a lot- with the “future” part, like the Doubting Thomas, even though there is clear evidence of God’s goodness in Brian’s life and the people, places, and things in it .  It’s hard to believe and trust, though, of the things yet unseen. I suppose there is a reason why it is called a ” faith walk”. I do know, that the way Brian lives his life, with his pure heart and trusting nature, ( for everything) is an example of true faith in action, one day, one moment, at a time. I can learn so much from my son…

So, finally getting back to my kit- here’s some important tools that I need for the long haul:

1)Sleep, 2)some form of daily exercise to clear my head, 3) Alone Time, 4) Other Special Needs Families 5) The ability to say, “no”, 6) Respite, 7) A Hobby that is fun and mindless-still deciding, 8) Vacations,  even a mini 6 hour one, 9) Lots of Humor,  10) Team Brian members who believe in him and his potential. 11) Compassion and Understanding, instead of Pity and Platitudes-Please!!!

I’ll be very happy just to get some decent sleep for starters, but each one of the aforementioned tools is vital for my long-term mental and physical strength for the journey with Brian. It’s a matter of putting on my own oxygen mask on first , before helping Brian with his (once a flight attendant, always a flight attendant 😊) First thing’s first. I think Brian would be in agreement.

What’s in your endurance kit for the long and winding road?

Until next time..thanks for reading!😊

Our beloved Brian turned 13 years old today! Brian, a teenager?! I’m still wrapping my brain around that one! Brian has a baby face, yet puberty has definitely kicked in full force and right on time ! He is still my little guy, yet he is growing up-too fast!  Birthdays are always a good time for reflection of the past, present, and future and I found today to be no exception. Brian’s life  has enriched ours from the moment he arrived on 8/25/03 at 11:25pm and its been an adventure ever since! Some of these adventures have been very scary, others heartbreaking, and still others very loving and rewarding. 

We continue to participate in Brian’s Life Adventures either directly or from the sidelines, watching Brian make his own way, in his own time.  It has and continues to take courage, patience, and faith in this journey with Brian. No one knows what the future will bring and when I think about it for too long, it can be a scary thing! Yet, the past 13 years have been remarkable for Brian and when I reflect on how far he has come, I am encouraged. I also believe that Brian was born, like all of us, with a  great purpose to fulfill in this life. He is part of the Master’s Plan, which is a great segue to a poem that I wrote 3 years ago for Brian’s 10th birthday. When I trust in God’s plans, somehow things work out for the best- I only have to look at Brian’s life to see that this is true.
The Master’s Plan

Dearest Brian,

How we love you! We have never been the same since that fateful night in August when we first called out your name.

You have made us better people through your courage, strength, and grace. You have won our hearts forever, no one can ever take your place!

While your challenges are many and often hard to understand, God said, “Please try not to worry, for Brian is in the palm of my loving hand”. “I know my plans for Brian will bring blessings and great joy to you, and those who know him, that Special Spirit and Beautiful Boy”.

So today, our blue-eyed wonder, we celebrate the precious gift of you! Thirteen years of an incredible journey! You have so much more to do! May your next year be filled with wonder, good health, and much love, with the blessings from our Master who always guides you from above. 

Until next time, thanks for reading! 🙂

The above photo is one of my absolute favorites!  I look at it almost daily, so I never forget how blessed I am. Life and motherhood hold a very special meaning for me as a result. This picture was taken on Mother’s Day, 2010, just 7 weeks after I finished my final chemo infusion for Stage 3 colon cancer. It was one of the happiest days of my life because I was here to celebrate my Brian, who is my reason for being a Mom. Twelve grueling chemo rounds were behind me and I felt great! I had pleaded, prayed, and bargained with God  the whole time to heal me because I needed to be around for Brian, and wanted to be with my husband, Jim. I was truly one of the lucky ones. Life is often not fair and there is no rhyme or reason why things happen, like cancer, or any other major life event. But I have learned through my personal trials both as a cancer survivor and Brian’s Mom that there is “beauty in the ashes”, that joy will inevitably  return, and that  there are blessings that come from the challenges that we  often find ourselves going through, though we may not always see them at the time of our trial.

Brian’s multiple disabilities certainly made our lives quite full ( and still do, of course), and at the time of my cancer diagnosis, Jim was also out of work ,so talk about the trials of Job! I look back now and think to myself how did we ever get through all of that?! Some days, not very well at all, truth be told. It was really tough to hold on to hope and we were often very discouraged and afraid. But  somehow, by the grace of God, we were able  to forge ahead. We had to   for Brian’s sake- there really was no choice. Kids have that way of really defining your priorities.  Despite the hell that was going on around him, Brian was unaware, and in this particular instance, I was actually grateful for his disabilities, as strange as that may sound. He was unable to understand what was happening, which was really blessing, as far as we were concerned. Brian’s priorities of Cheerios, chocolate pudding,  music, swim time, etc, remained, and these important things to him, were important to us too.

Many blessings did happen during that time. Our families and friends were stellar with their ongoing support, meals,  and prayers. I wrote a bi-monthly blog on a site called “support circle” to inform everyone of my trials and tribulations during cancer  treatment. This proved to be extremely cathartic for me; writing helped me to process my fear and sadness, while giving  me a “voice” in communicating with family and friends, when direct interaction was often not possible. We received many cards and phone calls that encouraged us to “keep on, keeping on”, which meant so much to us. Most importantly, Brian’s routine was maintained and he remained a happy boy (at least most of the time). 

Cancer does not discriminate, yet, I had truly thought at that time since we already had a son with special needs that we were somehow immune from this possibility. Our trump card was already on Brian-overload and will remain so for a lifetime. I figured if it were to happen, it wouldn’t be until I was much older, like most cancer patients. However, there are clearly exceptions, and it did take me awhile to wrap my brain around the whole cancer journey and its potential long-term implications for us as a family and especially for our Brian, our most vulnerable member.  A friend of mine is going through chemo treatments right now and she has a daughter with Down syndrome, a beautiful, bright young lady, who is 14 years old. Recently, I picked up the daughter to take her to day camp, and before we left, her Mom explained to her daughter that she was going for a chemo infusion that very day. The young girl immediately hugged her Mom and said that she was sad for her and asked the rhetorical “why, Mom?” Talk about a lump in the throat…I couldn’t agree more with the question. It is so unfair. And there is no answer to that question.

Yes, I have seen many blessings from cancer over the past 7 years.  I have become a stronger advocate, both for myself, and Brian, when it comes to both medical and educational matters. I was able to advocate for my Dad before he passed away from lung cancer a few years ago and I don’t think that would have ever been possible prior to my own experience. I believe I am also  a more  compassionate and understanding person. I do appreciate the life that God has given me and want to make the best of each day. And some of those best days can also  include napping, reading a book, or taking a long walk. Finally, I have learned the value of self-care, not only for myself, but for the well-being of my family. It’s never a good thing if the Mother Ship goes down!  I am forever grateful that I remain afloat and can bear witness to the amazing life that my blue-eyed Angel leads, which is the biggest blessing of all. 😊

Guaranteed to cause more  fear than any horror movie! The mere presence of a comb anywhere within Brian’s visual field can elicit a major protest. The donning of a cape signals that the worst is yet to come and a pair of scissors on their final approach to commence the hair trim is unbearable. My husband and I sweat more profusely than any intense workout can ever provide during the actual process, requiring our own sensory decompression afterwards. Welcome to the Haircutting Wars, the most perplexing, sometimes heartbreaking, and often frustrating experience for Brian and ourselves. This sensory struggle has been ongoing since 2004, when Brian had his first official haircut in the barber shop at 15 months old. We weren’t too concerned back then and knew that it wasn’t unusual for little kids to dislike haircuts. We had seen other little ones going through the same turmoil simultaneously with Brian and figured that he would eventually  “outgrow” this issue. Almost 12 years later, and still not much has changed, only that Brian has become much bigger and stronger. A part of me sometimes wonders if Brian will ever be able to tolerate a haircut at all….

Both the school staff and the home therapists have been diligent in trying to desensitize Brian to the process, starting with the visual acceptance of the “tools of the trade”, pictured above, and currently having Brian touch a comb, raise it to his head, and comb a small section of hair with hand-over-hand help. Brian has 22 goals in his IEP for haircombing alone-talk about “splitting hairs”!  I never knew that a basic goal could be broken down into so many small steps. Both we and the staff continue to wrack our brains to find THE reward to use exclusively for hair-related goals only. So far, no luck. We continue to use food and music as rewards while we search and Brian certainly enjoys both. In the meantime,  Brian’s hair still needs cut, so what to do?

While it has never been perfect, it definitely was easier when Brian was smaller to get a haircut.  We would bring him to a local kids salon where the staff were great and understanding. We tried to distract Brian with a video, gold fish crackers, praise, etc., but inevitably Jim and I would have to hold him down while the stylist quickly cut the hair with scissors . I was always amazed how well  (and even!) Brian’s hair came out under these circumstances. But there came a time when Brian’s particular stylist told us that she could no longer cut his hair because he was getting too big and strong to handle. That was a sad day for us.

Then Brian’s school at that time took over and were able to cut his hair at the school salon!  What a gift! Six years of absolute bliss, why, I never even gave it a second thought! Sure, Brian was not thrilled about getting his hair cut, but the impression I received from the teachers was that he was at least tolerating the haircuts and that there was a lot of supportive staff there to help him through it. It seemed just fine, until he no longer attended that program. Brian ended up back where he was 6 years prior (or perhaps things had never really changed, but we will never know for sure). Now what to do? Desperate times call for desperate measures, so we contacted all of our reinforcements: the teacher, behaviorists, therapists, and developmental pediatrician. Each professional had their recommendations and we decided to do the following: have Brian take Xanax one hour prior to his hair appointment to see if this would reduce his high anxiety and simultaneously, trim his hair while he was asleep, especially if the salon experience was unsuccessful.

The results of both strategies were mixed , both with hopeful potential. The Xanax did calm Brian down a little bit, but not enough to get a full hair cut done. He was still very unhappy, but the stylist amazingly was able to trim one side of his head. I call that alone a gold star performance!
In the meantime, I have been going into Brian’s room a few hours after he falls asleep at night to trim the other side with manicure scissors. A hair stylist, I am NOT, only a Mom who wants to help her son and will do whatever it takes.

Brian’s specialist said that we can increase the Xanax a little more for the next salon visit to lessen the anxiety and I continue to hone my hair cutting skills, late in the evening, while little boy blue slumbers peacefully. I continue to be reminded of the courage that it takes for our special children to face not only life’s challenges, but even things as seemingly benign as a haircut. How ironic that Brian loves to shampoo and wash his own hair and would do that for hours if we let him! Ah, our often quirky, never boring special kids, who always keep us on our toes, pull on our heart strings, and motivate us to move mountains for them so that they can live their best lives. Raising a special needs child is a privilege that has given us great blessings, but it is not for the faint-hearted and is sometimes discouraging because of times like these. Life would definitely be a lot easier without haircut meltdowns! Hopefully, that will become a reality in the future, step by step, snip by snip….I’m sure Brian will let us know when he is ready! 🙂

Thanks for reading! 🙂

  

Variety is the spice of life and in Brian’s world, the various extracurricular activities that he is able to participate in has certainly enriched his life and ours ! It wasn’t always this way, in fact, there was a time when Brian would experience sensory meltdowns in public places on a regular basis, forcing us to often retreat back home. I remember one particular instance when Brian was just 2 years old and I had enrolled him in a toddler
music class. We had attempted to go 3 times, but the result was always the same sensory distress. On the way home from the third class, there was a torrential rainstorm and both Brian and I were crying. I could barely see through my own tears, let alone the windshield, because of the buckets of water that were falling from the sky. So much water everywhere, lol! I laugh now, but back then, the sadness I was feeling during that drive back home was overwhelming. There was also a deep down fear that we would never be able to participate in any social activities. I couldn’t imagine such a fate for Brian, or myself, as I’m an outgoing person and enjoy the company of others. Relationships with friends adds meaning and joy to our lives and I wanted Brian to experience that too. It really was a tough ride for a while! I had to keep the faith, especially during those early days and believe that over time and with practice, Brian would gradually learn to enjoy and engage in recreational activities. Very slowly, but surely, he has….

Over a decade later, Brian now participates in a number of recreational activities, thanks to  the generosity and dedication of several organizations who have a huge heart for our kids. These activities include: music therapy, swimming, and adapted recreational sports, such as volleyball, soccer, golf, karate, and T-Ball. There are  social outings, such as the New Jersey Shore Pirates Expeditions that  Brian participated in just last weekend with a New Jersey autism support group.There are also year round holiday parties, day and overnight camps,  surf camps, horseback riding, our town pool, and gatherings with other special needs families. We are truly so blessed to have access to multiple resources and social opportunities for our children. I think advocacy and disability awareness has increased exponentially over the past decade, resulting in such a positive outcome, though there is always more work that can be done to improve the lives of the disabled.

We continue to expose Brian to as many activities as we are able to, knowing it’s important for his overall development and our mental health. Brian’s default button would be to either watch the same programs on TV or play with the same apps on his i-pad.  He would be quite content in doing only these things if we didn’t push him to try other activities. There is always an adjustment or transition period with each new activity, but like the movie, “Ground Hog Day”,  we know a lot of repetition is required in order for Brian to be comfortable. It’s predictable and Brian’s sensory challenges in this regard have improved as he has gotten older. We would like to think that  maturity and our efforts in exposing Brian to different activities have also helped him to tolerate and engage in social activities.

Sometimes, though, as much joy as we get from taking Brian to these recreational activities, it can also be physically demanding for us. I pray daily for good health to be able to keep this momentum going, for it is not easy with our plates so full  with our children’s needs, as well as our own. Finding that balance, while taking care of our special children and ourselves is critical.  I continue to learn that self care is essential for the long haul, particularly in this instance, when we will need as much energy as possible to keep moving.

“Oh, the things that I have done and the things that I will do in the future “, says Brian.
I feel sometimes that is exactly what Brian is telling us when we see the joy in his face while in the pool, or hearing  his laughter during a holiday party, or when he hugs people on the sports field. “Oh, the things that I can and will do, in my own time, and never when you expect me to!”, says Brian. Ain’t it the truth?!   🙂

Until next time….thanks for reading! 🙂

It surpasses most feats of control that I have ever seen in recent times. I cringe when Brian does this and I wish we could find a solution for it: I don’t know how Brian is able to hold his urine for several hours at a time. He will not go at school. He typically voids in the morning before the bus arrives and will go after he arrives home, but sometimes not until dinner. I am fascinated how this is even humanly possible and simultaneously concerned that he can damage his kidneys. Brian is given every opportunity throughout the day to drink fluids, but will typically take only small amounts at a time, unless it is very hot outside. We even had a visit to the emergency room last summer because Brian hadn’t gone to the bathroom in 17 hours! My menopausal bladder couldn’t  even imagine holding for that long! After blood work and a renal ultrasound, (which thank goodness were normal), he eventually went, but to say that this whole ordeal was stressful would have been an understatement. The ER physician just shrugged his shoulders and said “some kids just do this for no reason” and advised us to keep pumping fluids into Brian. This is the tricky part, as he is not a big beverage enthusiast, so while we try to do just that, we also supplement his liquid intake with foods, such as yogurts and mandarin oranges.

We have also presented Brian with a variety of different beverages to sample, with the hopes that he will really like one particular flavor and will want to drink lots of it. I had gone to the supermarket with this mission in mind and loaded up the shopping cart with 20 different kinds of juice/flavored waters. The cashier joked that I must be really thirsty upon check out, which was my exact hope for Brian, or at least to have a “thirst/preference” for one of these drinks. The results were ambivalent at best, but we keep trying…Children with sensory integration disorder require several trials of practice whenever anything new is presented to them. Slow and steady is necessary, along with lots of patience and praise. So far, Brian is taking sips here and there of everything, so at least it’s progress, but no Favorite Beverage yet. It can be exhausting, so I need to keep my humor intact and take some deep breaths….

Just to spice things up- Brian had 2 episodes of blood in his urine a couple of months ago, with the last episode warranting another visit to the ER. This time, I was more prepared and grabbed a pair of nail clippers and manicure scissors on the way out the door. I know Brian would receive Versed, a drug that provides delicious conscious sedation ( for more blood work and diagnostic testing), making any sensory activity possible, such as trimming Brian finger and toe nails, and hair. These personal grooming activities are otherwise very challenging, especially haircuts, which requires the strength of Hercules and 3 adults. My husband and I never sweat so much then after one of these episodes. The Haircutting Wars will be a separate blog of its own, so stay tuned! In the meantime, back in the ER….

More extensive blood labs were taken under Versed, (in addition to Brian’s annual blood labs, might as well kill 2 birds with the one stone and avoid a meltdown at Lab Corp!)and the results were once again normal, except for the white blood cell counts, which were high, and a blood marker called ASO, that was also very elevated and indicated that Brian had been exposed to strep at some point over this past year, (which he had been), actually 2 times with strep infections of the throat. I learned that strep can sometimes travel to the kidneys and do some serious damage. You can imagine my anxiety upon this discovery, trying nevertheless to be calm, but finding this difficult because of Brian’s extensive medical history.  This was probably  a urinary tract infection, (UTI), but the ER doctor said that only a postive urine culture could confirm that.  We would have to wait 48 hours for that result- so in the meantime, it was presumed that Brian had a UTI and he was to begin a course of antibiotics immediately. The second level of the renal ultrasound was normal, thank goodness, so at least structurally everything was OK, as well as Brian’s urinary function. So a clipped and coiffed Brian was discharged from the ER with a prescription in hand and a desire for the movie, “Frozen”.  His wish was granted after the intial dose of antibiotic was taken and then we waited for the urine culture results…

Fast forward to 48 hours later, the result is in, and it is: negative!  The ER doc recommended that we see a pediatric nephrologist as soon as possible, and to stop the antiobiotic. We were given a referral and set up the appointment for the following week.  Miraculously, I was able to collect a urine sample from Brian 30 minutes before our appointment. The high ASO blood lab result was still heavy on my mind right before we entered the doctors office, as much as I tried to dismiss it. You would think after everything Brian has been through: open heart surgery, an orchiopexy, eye surgery, ear.tubes, and various orthopedic challenges, that I would be somehow stronger as a result  or used to medical adventures. Heck, I’m a colon cancer survivor and went through surgery and 12 rounds of chemo!  But when it comes to our children, that instinct to protect them at all times is so powerful that it can supercede logic and rational thought. I was definitely having one of those moments again.

 

The pediatric nephrologist is warm and engaging . Brian connects with her immediately; I am at ease within a minute. She examines him without resistance on his part- unbelievable, it’s all good so far. Doctor then queries me, reviews the extensive ER report, tests Brian’s urine with the dipstick, then smiles broadly. The urine is normal! Drum roll……….and the verdict is: viral cystitis . This is a viral bladder infection, which can cause bleeding and takes a month to clear up, hence the 2 bleeding episodes that Brian had had. It also explains why the urine culture was negative, as it was not a bacterial infection. Viral
cystitis happens infrequently, which made me smile as Brian often  seems to be on the “rare line” when it comes to his medical issues. In this instance, the bladder was acting a little crazy, like a mad bladder does, when it has a viral infection. It presents like a UTI, but it’s not. It took an ER visit to get this ball rolling and the story concluded happily with this lovely pediatric nephrologist, so I am truly grateful. Regarding that pesky ASO blood lab result?…Doctor waved her hand dismissively when this subject came up- “This value means nothing-it only shows that Brian was exposed to strep at some point over the past year and has nothing to do with his kidney function. The number will return to the normal range over time”.  Hip,Hip, Hooray!! 🙂

But the best was yet to come. I explained Brian’s beverage intake challenges with the doctor. She agreed that Brian needs to drink more (though the viral cystitis was not related to how much Brian was or was not drinking) and suggested trying Crystal Lite. It’s one of the 20 beverages that we did NOT try yet and have lots of at home! Doctor further explained that Crystal Lite has an ingredient in it that breaks down kidney stones, while being tasty, and low in calories. Triple Bonus! And it’s super cheap to buy in bulk because of Costco. We already had tons of it at home, as my husband enjoys an “Arnold Palmer”,.which is Crystal Lite ice tea  and  lemonade mixed together.

As soon as we arrived home, I made an “Arnold Palmer” for Master Brian and he enjoyed it!  He didn’t guzzle it down, but he is taking at least more than a sip at a time, which is a better result than what we had with the other 20 beverages. How ironic that we have had Crystal Lite at  home for years now, but the idea for Brian to try it had totally eluded me. Brian continues to drink more Crystal Lite and we continue to explore other flavors, without breaking the bank. And as far as going to the bathroom? Brian still won’t go at school, but he is voiding more, as he drinks more. One day at a time…

It took a circuitous adventure to reach this happy ending, but I’m sure grateful that the troublemaker in this episode was just a mad bladder and nothing more. The Crystal Lite suggestion by the nephrologist proved to be brilliant and accepted by Brian, which is a huge deal and a relief for us.
Good ol’ “Arnold Palmers”- what a difference the right beverage makes for a young boy’s palate and a Mom’s peace of mind- cheers!!

Until next time- thanks for reading! 🙂