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! 🙂

Ah, the infamous Tricky Tray, the annual super fundraiser that generates thousands of dollars for a worthy cause. For those of you who may not be familiar with one- local businesses, families, and friends donate lovely gifts/gift cards which are wrapped in beautiful  baskets to be won by some of the lucky attendees. The mammoth amount of work that goes into the planning and execution of a Tricky Tray is mind-blowing! The solicitation of the gifts, the wrapping of approximately 300+ baskets (in our case) the creation of the program, and so much more, is exhausting, but simultaneously rewarding. Brian’s school held its Tricky Tray a few weeks ago at a local catering facility, with almost 450 attendees! This year’s very worthy cause is for a new adaptive playground, designed by the school’s occupational and physical therapists. It will be an extremely valuable asset for many students at the school who struggle with fine motor and gross motor challenges, enabling them to further hone their skills, while having fun at the same time.

The Moms
responsible for the huge success of this year’s Tricky Tray are some of the hardest working/giving women that I know. They devoted several  weeks
of their free time before the actual event, despite having such full plates with their own children’s special needs. Their attention to detail, their willingness to help in any way possible, their creativity and determination to pull together a fabulous fundraiser, was inspirational. I am proud to know them and respect all the hard work that they do throughout the school year to ensure that our kids have enriching social and educational opportunities. I have very recently joined the ranks of Brian school’s Parent/Teacher Association (which is called the Parents Professional Organization, or PPO)
and am glad that I have.  I realize that the children are not the only ones who benefit from this organization.

I too, am a blessed recipient of a number of gifts as a result of my recent volunteering
with the PPO. Some are obvious, for example, the joy I receive knowing that Brian and his fellow students get to do a variety of things, like
going on field trips, experience parties, and other social events, which is great for their overall learning and  all made possible by the PPO. Volunteering my time also allows me to forge  new friendships with other  like-minded parents, which is a huge gift!  One of the struggles in the special needs journey is the tendency to become isolated and bogged down by the endless details of our child’s care. The caretaking can be all-consuming, both physically and mentally, so it is good to connect with other parents who totally “get it”, even though the needs of our children are often different. We need each other and friendships to get through the ups and downs of this life. Finally, I receive the Gift of Healthy Distraction, which is truly a blessing, because I realize with each passing day that while I do as much as possible to create Brian’s Best Life, I  still struggle with those aspects of Brian’s life that are challenging and will remain so for the duration.
I find that I can best cope with this truth when my attention  and energies are channeled into productive, meaningful, activity. It really is a “win win” for all involved!

Our life with Brian is often an adventure with its unique twists and turns, never boring, and often eventful. Volunteering adds richness and flavor to this journey in ways that I would have never imagined,  while meeting great people along the way.  I am glad for this opportunity to be involved, for in the final analysis, we parents need one another for support and encouragement as much as our children need life experiences that will help them to grow.

Until next time…thanks for reading! 🙂

.

Brian and his doctors, 7 specialists and the local pediatrician specifically, have played an integral role in maintaining Brian’s health with great care and compassion. These specialists include: an otolaryngologist, opthamologist, cardiologist, hematologist, hepatologist, orthopedic surgeon, and neuro developmental pediatrician. Whew!! That’s a mouthful and quite the “all star cast”! Brian is pictured here with his orthopedic surgeon, who has been a member of Team Brian for over a decade. It has taken a lot of office visits and a lot of practice over the years for Brian to become comfortable with these physicians and their staff. Remarkably, we have still retained the services of all the specialists that Brian has seen since he was a toddler. Of course, that will inevitably change with the passage of time as these doctors retire. There are also additional specialists along the way who will join Team Brian, like  Specialist #8, the pediatric nephrologist that Brian had an appointment with yesterday for the first time. Brian was ultimately diagnosed with viral cystitis, aka, ” The Bladder Blah Blues”. It was the perfect ending to an eventful, scary tale that began over a month ago. Let me explain…

Approximately 5 weeks ago, Brian had  some blood in his urine before bedtime on a Friday night.( Why do medical issues always happen on a weekend night?!) It was definitely disturbing to see and totally unexpected. These are the times I really wish Brian could speak and tell us how he is feeling- we could only go by his behavior. Brian wasn’t very hungry that evening (which is a huge red flag in itself) and was somewhat irritable. These symptoms could mean just about anything; maybe it was a flu coming on, maybe he had an earache, etc.,.but the last thing we expected to see was  hematuria. Fortunately, we have a local pediatric “doc in the box” that is open until midnight. We brought Brian there and he was diagnosed with a urinary tract infection (UTI) and a prescription was called in for an antibiotic. Two days later, the urine culture came back negative and we were told to stop the medicine.
We were referred back to the local pediatrician, who wanted Brian to give another urine sample. The bleeding episode did not recur and then life got very busy for us for 2 weeks. I had planned on taking Brian’s urine sample to Lab Corp on a particular morning then came the unexpected…again! More blood in the urine that very morning, almost 3 weeks after the original episode. This time we went to the emergency room (ER). A renal ultrasound was done, along with a series of blood labs, and this time the white blood cell counts were extremely high. Antibiotics were started again, then the urine culture came back negative again. Argggh!!! This time, we were told that Brian should  finish the antibiotic. We were then referred to the pediatric nephrologist who determined after she reviewed all the ER records, blood labs,  renal ultrasound, and a urine sample from yesterday,  that Brian merely picked up a virus that had
irritated his bladder ( viral
cystitis). Viral cystitis causes bleeding and can take up to a month to clear from body (hence, the 2 bleeding episodes in 3 weeks).

Three hours at the pediatric urgent care, 6 hours in the ER, several forms to fill out, and a specialist visit later, we finally have resolution and the diagnosis is a simple bladder virus. Don’t get me wrong, I’m very  grateful that it was nothing more serious, but we could have definitely  done without the exhausting, circuitous route in order to reach this conclusion. Welcome to the world of medicine, which is truly an art and not a science. At least other things were ruled out and Brian’s annual blood labs were done, thanks to Fabulous Versed, a concious sedation that makes all procedures possible without tears. Versed is definitely Mom’s Big Helper, too bad we can’t take a prescription to go and use it for haircuts and other sensory nightmares that Brian experiences. We can only hope that this may be a possibility in the future, lol!

In the meantime, the medical adventures will continue to come and go, as they are part of the Trisomy 21 legacy. Brian has been strong and courageous throughout  all of his procedures from open heart surgery to eye surgery. Viral cystitis is small potatoes compared to these major medical procedures, that is for sure! We hate to see our kids go through any test, big or small, but they are often more resilient than we give them credit for. Brian’s strength in his challenges  is the stuff that legends are made of.  It gives me the ability to carry on when some days even getting out of bed is an act of courage. My son is a hero, a Marvel with Moxie, and always will be. 🙂

It’s Official! My name is Brenda McDonnell, and I’ve been a blogger for 3 weeks now via WordPress, sharing the joys, trials, and tribulations of raising my son, Brian, who has Down syndrome and autism. I call him my Marvel, who has a lot of Moxie, hence, my newly created Facebook page, Marvels and Moxie. For the past 3 weeks, my WordPress blog had been linked to my personal Facebook page, but effective immediately, future WordPress blogs will be linked
right here at Marvels and Moxie! Computer- savy I am not, it’s been an adventure to say the least, but I am definitely learning!! 🙂

I look forward to sharing Brian’s ongoing special needs journey with you in the months to come. It is my hope that you will find solace, humor, and support here. No man is an island, particularly in the special needs world, where support, understanding, and resources are essential for our children and their caretakers.

Until we meet again…thanks for reading! 🙂

It generally happens at the most inappropriate times, rain, snow, or shine. It means: ” I don’t want to”, “I don’t understand this”, or “I’m tired”.
It can be frustrating and/or annoying for all involved and I have often received phone calls from school regarding it- introducing the tried and true, “stop, drop, and flop”. I first heard this term from one of Brian’s physical therapists years ago when he attended a center-based early intervention program. A child will suddenly stop in their steps, drop to the  ground, and refuse to get up. This phenomenon is quite common amongst people with Down syndrome. I always associated this behavior with small children, but like many other adventures along the special needs journey, these episodes can last even into adulthood. 😦

Gross motor movement has always been a struggle for Brian. He was a late walker at 4 years old and didn’t let go of a hand until nearly 5 years old. Brian has worn a variety of orthotics since he was 2 yrs. old due to severe ankle pronation in both feet. Brian is also flat-footed and low-toned. These ingredients are a recipe for struggle and fatigue, which can also cause behaviors, I am sure. Add in transition troubles because of an unfamiliar situation or just a plain old tween, “I don’t wanna”, makes it very challenging to motivate a 105 lb. boy to get up and get going. Over the years, all kinds of tactics have been tried to motivate Brian to move, some of them have included: food, music, tokens to earn rewards, verbal praise, and more music. Each of these motivators have been vital, successful at different times, and necessary. Redirection/distraction have also worked. Sometimes Brian gets further than other times. Sometimes nothing works initially and we have to really wait Brian out- 1 Mississippi, 2.Mississippi, etc.
It’s especially during these particular times that I need a LOT of extra patience and a  glass of wine later on, just sayin’! 🙂

In Brian’s defense, there has been , albeit gradual, improvement with fewer instances of dropping to the ground, especially over this past year. At that time, Brian had started a new school and daily transitions were tough for quite a while, with a LOT of stop, drop, and flop episodes. It was discouraging and I began to wonder at a certain point how Brian was going to ever move forward, literally. Then slowly, gradually, eventually, there was less dropping and more walking, step by step, inch by inch…

And then it happened!! A culmination of 14 months of patience, persistence, and praise with rewards paid off! I received a note from Brian’s physical therapist yesterday that stated Brian walked around the school building with his classmates TWICE without dropping once !
Hooray! Happy Dance!  I believe that the ” highs are higher and the lows are lower” when experiencing these life events with our children. We greatly appreciate every little thing that they have worked so hard for (and what most of us take for granted). Conversely, adversities that our children go through  have the potential sometimes to really bring us down, as the struggles can be intense and prolonged. I try to remember Brian’s successes  during these tough times and to have very flexible expectations, but its not always easy.

Longterm success for Brian is generally  correlated  with a structured routine, a good nights sleep,  LOTS of time, and LOTS of rewards!  I have to constantly  remind myself of these things  if I forget or focus on what is NOT happening in the moment. It’s a mental exercise that I must practice daily, lest I become negative and lose perspective. This can happen all too easy if I allow it.

In the meantime, I will savor this victorious moment and look forward to the next one, for it will surely come, step by step, and in Brian’s own time, not mine. 🙂

Until next time….thanks for reading!

She is beautiful, kind, feisty, and courageous. She is called Mom, Nana, Friend, Auntie, and Sister. She is one of a kind, with her Irish brogue and her heart of gold. This is Meta, my beloved Mom, and the reason why I celebrate Mothers Day this Sunday. It is also Mom’s 85th birthday today, can you believe it looking at this picture taken 6 months ago?!  Mom is truly 85 years young, and I feel so very blessed to still have her with us. My Dad passed away 2 years ago from lung cancer and it was a devastating blow for our entire family, especially for Mom. They were married for over 60 years, had known each other for 64 years, and were the best of BFFs. They were truly 2 peas in a pod and did EVERYTHING together! As you can imagine, the first year after Dad’s passing was so incredibly painful; everything was a trigger, a memory, of what they had done or shared together. While the pain will always remain, I have noticed that Mom has become much stronger over this past year in her determination to get involved in activities, meet up with her friends, just like she used to do with Dad. I know that he is extremely proud of her, along with the rest of the family because of the tremendous progress she has made during these past several months. It is so good to see Mom joyfully  participating  in life once more, with her beautiful smile and energy that is so a part of who she is.

Mom loves being “Nana” to her 6 beautiful grandchildren. She has their pictures displayed throughout her home and loves to spend time with each one. Mom also happens to be Brian’s biggest fan! Her devotion to him and concern for everything that happens in his life, has always been the case since Brian’s birth. Brian is Nana’s “wee man”!  Mom will often say how Brian is such a special angel in our family. She has treasured the visits to his school on Special Persons Day and marvels at his progress overall. Mom will cheer Jim and I on too, always telling us how we are such great parents, how proud she is and how much she loves us. No matter how old you are, it’s always wonderful  to hear compliments from your Mom.

I  enjoy our daily conversations and we usually get together a few days a week. I’ll take Mom to medical appointments, church, or shopping while Brian is in school and we’ll often have lunch afterwards. We laugh, cry, and sigh together. We bounce ideas off of one another. I often seek her listening ear and wise counsel when it comes to life’s challenges. I treasure her “Hello Love”, when she hears my voice on the phone. I love creating these wonderful memories with Mom, it’s the stuff that a good life is truly made of.

So, it’s a double blessing of Mom’s  birthday and Mothers Day that we honor and celebrate this weekend! Thank you, Mom, for showing me by your example what it takes to be a good Mom. You are a marvel who inspires your family with your moxie and deep faith. You mean the world to me and I love you with all of my heart. ♡♡♡♡♡♡♡♡♡

Happy Mothers Day to all!

Until we meet again, thanks for reading. 🙂

Brian is a pretty happy camper most mornings (see above picture) while waiting for the school van, with the exception of Mondays, as transitioning off the weekend is generally difficult. Can’t say I blame him, as I dislike Mondays too! Extra coffee and music get our Mondays going in the right direction, along with Brian’s Transportation Dream Team to school. We love our current driver and aide! They treat Brian with great care,  kindness, and patience. I never have to think twice about his safety and am confident that he is in the best of hands. What a blessing! 🙂 I tell them all the time that they can’t leave until he finishes school at 21 yrs.old. Unfortunately, we have also had a bad bussing experience in the past, which is sadly not unusual in the special education world. More on that later…

Special needs school bussing is often underrated, yet is  the most essential and important part of the students day as far as I’m concerned. The bus driver and aide are transporting our precious cargo to and from school and are therefore responsible for their safety and well being. It is a huge charge and not one to be taken lightly. It is especially concerning if your child is non-verbal, like Brian is, or if your child has limited language or is unable to communicate their feelings. Our kids can be potential targets for abuse; it is awful that this can happen, which is all the more reason why we parents need to be extremely vigilant about our kids transportation providers.

When I look back now, it is hilarious, but I was one of those “helicopter” Moms when Brian took his first bus to school (in town) at 4 years old.
There was no stopping me- I interrogated the driver and aide about safety procedures , made them demonstrate how they would buckle Brian in his seat, asked for all possible phone numbers, just in case something happened during the 4 mile drive. I drove behind them when they took Brian to school for the first week too. The driver and aide must have thought I was nuts, which I was a little, of course, lol, but with a little boy who is nonverbal, it made a lot of sense to me. They had my son after all! In time, the driver and aide gained my trust and I was able to relax, knowing all was well. It was difficult to part ways with these wonderful folks when Brian eventually changed schools. It was the very first time that  I really  understood what it must be like for Brian to experience change- it’s really hard to transition to  new and unfamiliar people, places, and things.

We had a very similar experience with the next bus driver and bus aides assigned to Brian and 4 other students. Over time, I felt comfortable with this bus staff, as they too, proved to be very competent and caring. In fact, I went as far as writing letters of commendation to the transportation supervisor, highlighting the bus staffs dedication to the children and professionalism on the job. It was  the perfect scenario for 6 years and then things changed when Brian switched schools a little over a year ago.

First impressions are very telling and gut instinct is there for a reason. My initial impressions and of the new bus driver and aide this time around were not as positive as previously. The driver was unpleasant and the assigned aide seemed to be unfocused. I made specific requests for basic accommodations for Brian ( to make the ride more pleasant and to ensure an on time arrival at school) and they were met with resistance. I was quite befuddled by such a reaction, (my requests were never a problem before for the previous transportation companies) and presented my concerns to the owner of the bus company in a polite and professional manner. He said he would see what he could do. The very next day during the middle of Brian’s IEP meeting, we received copies of  3 scathing memos from the bus company owner sent to the transportation manager at Brian’s school claiming that I was being “unreasonable” with my requests, and how Brian was “causing a disturbance on the bus”. What?!  This is a bus company who allegedly  services children with SPECIAL NEEDS!! Shame on them! Needless to say, Brian never went back on that particular bus again, effective that day! It actually worked out for the best, eventually leading us to our current bus driver and aide, thank goodness!

Unfortunately, incompetence and unprofessional behavior from those individuals entrusted to our children’s care is an inescapable part of the special needs journey. Hopefully it is more the exception than the rule, as the majority of folks who interact with our children do care and are well-intended. In the meantime, we continue to tell our present Transportation Dream Team that their daily role is greatly appreciated. Peace of mind is priceless, and so is the giving of compliments and small gifts at Christmas and the end of the school year to the folks who provide such an important service for our children. They are and always will be integral members of Team Brian.

Until next time…thanks for reading! 🙂

Brian’s got that something extra, genetically speaking. Each of his cells has an extra copy of Chromosome 21, aka Down syndrome ( DS), or Trisomy 21, and this has and always will effect the way Brian learns, communicates, and experiences the world. Brian also has autism, and although there is not a genetic difference correlated with it (at least for now), autism has also effected Brian in the previously aforementioned ways. Children with DS and autism (dual diagnosis) are unique and very different than their peers with DS alone, or children with just autism, particularly as it pertains to speech (or lack there of), socialization, behavior, and academics. Often children with the dual dignosis struggle more in these areas: it’s like another layer of challenges to work through, but thankfully, teaching methods like ABA (Applied Behavioral Analysis) break down academic skills, activities of daily living, and behavioral skills into simple steps that can be taught and learned through positive reinforcement. All of these skills  can be recorded, measured, and analyzed for progress over time, like it’s done at Brian’s ABA school. We also have a home ABA program through our medical insurance, where therapists come after school for a couple of hours to reinforce academic and activities of daily living skills. All of the above is just one division of “Team Brian” that is involved in The Daily Operations and will be until Brian finishes his education at 21 years old. It’s hard to believe that Brian is now more than halfway done with his formal education. It just seems like yesterday when he started early intervention at his center-based program at 16 months old…Twenty one will arrive too quickly and the future for Brian and other post-graduate special needs students is sometimes scary to contemplate. Fortunately , post-graduate programs are emerging  and the resources / demand for such programs are both huge and extremely necessary.

Brian’s got that something extra, medically speaking as well.  Our first introduction to The Medical Division of Team Brian, was when Brian was diagnosed with a hole in his heart in-utero at 4 months old. Bedrest followed when I was 7 months pregnant  (in the hospital), then Brian was born one month later at 36 weeks. Open heart surgery took place when Brian was 3 months old. It was one of the most scariest and difficult, yet victorious of times, as Brian emerged stronger than before. His strong spirit would serve him well going forward and still does today.
Over the next 12+ plus years, Brian’s additional  medical procedures have included an orchiopexy, ear tubes, and eye surgery. Brian has also worn various types of orthotics since age 2, eye glasses, and more recently, a back brace for scoliosis. He sees his local pediatrician and 7 other physician specialists, plus the dentist. I’m glad that my 8 years of previous pharmaceutical sales experience has come in handy when I speak with Brian’s doctors today. At least I have some basic background knowledge on disease states and treatments. I have also  learned to do my research and write down my questions, sometimes even recording the more extended specialist visits. It really does take a huge medical village to keep our children healthy!  We are especially grateful for those doctors and their staff who really “get” our kids, listen, have compassion, and offer effective solutions. Brian’s medical experiences have been overall very positive.

Finally, Brian’s got that something extra in his personality and spirit that makes him so special and unique, just like each of one of us.  He loves to give and receive “death grip” hugs. His smile is trademark and causes the world to smile with him. He loves to giggle with a hearty belly laugh.  He is funny, trusting, pure, and kind. He is a handful, but is so worth every effort. He is our hero and deserves a purple heart for his acts of courage with every challenge that he faces. He never gives up and encourages us to do the same.  He lives life fully in the moment, a lesson that I need to keep learning. Brian’s journey is not an easy one, but is filled with hope and blessings in the people, places, and things that we have encountered along the way with him,  all  because of that ” something extra”. He’s  definitely a keeper! 🙂

Until next time…..thanks for reading!