As we commemorate our military personnel for their ultimate sacrifice this weekend, I am reminded of just how important it is to honor both the deceased and the living. Of course nothing trumps the sacrifice of laying down one’s life so that others are privileged to enjoy the freedoms of a democracy. We are truly blessed to have such opportunities in the United States. Despite our many problems, we still live in the best country in the world. One only has to travel to other regions of the globe or even read news headlines to know that this is true. I can tell you first-hand how fortunate Americans truly are based on my own personal travels and living in Europe for a time- as exciting as it was to see and experience other cultures, there truly is no place like home. Yet, I do see a trend that is disturbing and makes me wonder what the future holds for our beloved nation.

You don’t have to look too far to know what I’m talking about. Turn on the television, read the same newspapers, or go on social media. You will hear or see almost instantaneously folks being “dishonorable”, whether it’s reporting false news and/or saying mean-spirited things to others . Spirits are being broken and disrespect is the norm. People talk over one another instead of thoughtfully considering what the other person is saying. It’s OK to “agree to disagree”! It’s the dismissive, disrespectful way in which it is done that is so troubling. It’s a “me” first attitude- I don’t care about you or what you say or do. Can you imagine our soldiers conducting themselves in such a manner?! Our country would indeed be a very different place today if that were true. These qualities are the antithesis of who are military are and how they are trained. Respect, honor, dignity, and sacrifice are the creed of those who protect our country. These are also wonderful character traits of an outstanding town or neighborhood when it’s residents practice these principles.

The definition of “honor” is high respect, great esteem. Each one of us is worthy of these things and in turn, should demonstrate the same to others. Our special children are just as worthy of honor as anyone else, just by being themselves! Tireless advocating, educational/social opportunities, and familial/community support has made this possible for them. It has not been easy and continues to be a work in progress, but the way the world sees and includes disabled people has absolutely improved, even over the past decade. Sadly, I have occasionally witnessed and personally experienced disrespectful behavior towards Brian within the special needs community. This especially hurts, as you would never expect it to occur “amongst your own”, but it does happen. Fortunately this is the exception more than the rule.

How do I want to honor my son and others with disabilities? Let me count the ways…

1. People First- Disabilities Second! We are all part of the same human race with feelings, interests, and hopes, regardless of how small or significant one’s disabilities may be…

2. Sacrifice- Tireless efforts to improve our children’s quality of life, medically, educationally, and socially speaking, is our life’s mission that forces us to be on the front lines for a lifetime. We sacrifice tremendously, often at our own expense, physically, personally, and financially, but it is the honorable thing to do.

3. Advocacy- this reality is a given with a disabled child, whether we like it or not. Just like a soldier who would defend his brother in arms, we parents must always do the same when it comes to our special children’s rights. Because I honor my son, I will do my best to make sure he receives what he needs to live his best life. I may not always be successful in my attempts, but I will ultimately persevere and try to make things right because Brian’s life is worth this kind of dignity.

4. Loyalty- Our kids need our faithfulness and devotion in all things that we do for them, a tall order to fill indeed, as it will be for a lifetime. I often shudder and become overwhelmed if I ponder this thought for too long… so I try to to take things “one day”, sometimes “one moment” at time. I’m sure our soldiers in the trenches have often had similar thoughts.

5. Love- ” There is no greater love than to lay down one’s life for one’s friends” (John 15:13). This is the ultimate act of honor; your love and respect for your country and your family is such a powerful force that such self- sacrifice is possible. Brian brings that force out in me and Jim. We know many parents just like us. Love is a God-given gift that makes all things possible, especially the impossible! And the love our kids give back to us in return- there are no words to describe such sublime, honorable moments, and I wouldn’t trade them for anything!

Wishing you many loving, honorable moments with your family and friends this weekend and always. Thanks for reading! 😊

:, There is nothing like springtime: warmer temperatures, beautiful flowers, communions, weddings, and graduation ceremonies! For me, Spring has always represented a season of hope and expectation, the opportunity to begin each day anew . The dismal days of Winter are finally gone!! Outdoor festivities and light have replaced cabin fever and darkness-it’s amazing how this transition can change one’s mental perspective… it certainly has changed mine for the better, especially this year, when the Winter seemed especially long. Oh, the places I look forward to going to, even if it’s just to a local park to walk around!

One of the highlights of Spring so far for my husband, Jim, and I, was our niece, Fiona’s college graduation this past weekend! Fiona is a beautiful, young woman, smart, hard-working, and kind. We were thrilled to see Fiona graduate with many honors of distinction this past Sunday. She earned every single award with intelligence, persistence, and patience, the qualities that are typical of all very successful people. We have no doubt that Fiona will soar to even greater heights as she pursues her MBA over the next year. In fact, all 23 of our nieces and nephews are smart, good-looking, talented, and most importantly, kind/compassionate young people. God has truly blessed them all with many gifts! Brian is so fortunate to have so many caring cousins, as we are to have them! Their wonderful parents have raised them well and the tradition continues as they have started to marry spouses who are also “cut from the same cloth” and in turn, impart these values to their children. Jim, Brian, and I love them all and only wish that we saw them more often, as their lives have taken them to various parts of the state, country, and even the world ( we have nieces and nephews in Norway and our niece, Katie, and her hubby, Kit, and newborn, son, Max, reside in Australia!). Oh, the places they have gone, both figuratively and literally!

Milestones, such as graduations, are wonderful celebrations of achievements, and a reminder of the exciting future that lies ahead, but can also simultaneously be reminders of dreams that will not be realized for many special needs families . Such moments always hit me emotionally without warning, intense in their strength, but thankfully short in duration. This weekend was no exception. It’s like a major pulling of a heart-string, an ache, a longing. It’s bittersweet, and it hurts. Thank goodness Brian does not understand; it’s clearly my own issue as his Mom. Even Jim is often more pragmatic about the big picture for Brian than I am, although he too, has confessed his sadness on various occasions over many things we had hoped for Brian as far as milestone accomplishments and life experiences that will not happen. It is not easy- every parent has dreams and hopes for their child and when you are reminded that they will not come to fruition it is sad, yet, it is not the end of the story- hardly! We have (and continue) to have new dreams and hopes for our son. They may not be exactly what we expected or would have wanted for him, but healing, time, and life experiences have changed our perspective and life priorities. We try to have flexible expectations and remain hopeful, even when circumstances have been very challenging and have tested our faith. We have learned that God is always faithful, even when we don’t always trust Him, especially during a fiery trial. Somehow, things work out, even when we don’t feel it or believe it at the time. I only have to look back at the evidence over the past 15 years of my life to know that this is true. Oh, the places we have gone to! Some of those places I’d rather not return to, yet, to be honest, some of my most critical character building sessions have taken place there, making me a more mature, stronger person, essential qualities for raising a child with disabilities, when I look back in retrospect.

We were so proud of Brian this past weekend! There were several transitions and adjustments that he had to continually make: sitting in the car for the 4 hour drive each way, spending time with his Aunt and cousins who he hasn’t seen in a while , sitting in a noisy restaurant eating “different pizza”, and sitting for a 2.5 hour graduation ceremony. These are huge achievements for someone with autism! The aforementioned is an example of a world of routine being turned totally upside down. There is always potential for disaster to happen, we just never know when. We try to prepare with favorite snacks, iPad, music, headphones, etc, to make these changes easier and just happened to be very fortunate this weekend. Brian’s tolerance for the unfamiliar has certainly improved from years ago, but he (nor we) will ever be 100% free from this aspect of autism that causes meltdowns and frustrations for all concerned. That’s when flexible expectations come in very handy for us; I would never leave home without them!

When Brian was first born, we were given the poem, ” Welcome To Holland”, that uses a metaphor to describe raising a child with disabilities, comparing it to a plane ride , where you thought you were going to Italy, but ended up in Holland instead. The parents were disappointed, but learned with time it was just a ” different” place, where happiness and contentment could still be realized. To be honest, I despised that poem, especially early on, and most definitely when Brian was later diagnosed with autism. I would call that moment: “Welcome To Beirut-a Place where no one wants to visit, let alone live in”. I continue to struggle with this final destination and know I always will…

While the emotional wounds will never quite heal over and can be briefly torn open or triggered by various family milestone events, I know there are also our own historical milestone moments with Brian, with more to come. As a matter of fact, Brian will “graduate” next month ( with cap and gown!) and “move up” to the secondary program at his school. This moment in time will represent 12 years of patience, persistence, teaching, and love on behalf of many educational professionals, family members, and friends, who we affectionately call, “Team Brian”. Oh, the places you have taken us to, and the places Brian will go to! Some places will be less desirable than others, but I must always remember that they are not the final destinations, rather, they are merely “layovers” for better locations, a life journey that is really the same for everyone, disabled or not.

Until we meet again, thanks for reading! 😊

I have often heard the expression: ” God gives special children to special people”, and while I often cringe inwardly upon hearing this statement (especially on a bad day when there is nothing special whatsoever about your 14 year old throwing his clothes in the toilet, wetting his bed, or perseverating relentlessly via sign language for gold fish crackers 😫), most days I would have to agree. Life is often hard for and with our kids, yet I couldn’t imagine life without Brian, despite the trials and tribulations. Not everyone would be up for the challenges that we special parents have to face with our children, day in and day out. It is physically and mentally exhausting, while simultaneously exhilarating, especially when they achieve the smallest of milestones. Now don’t get me wrong- if I had a magic wand, I would definitely make all of the physical, mental, and emotional challenges that Down syndrome and autism have created in Brian’s life go away in an instant. Life would surely be easier for Brian, my husband, and I! In the meantime, hope and faith, along with other special families, continue to encourage us in our daily walk. Medical and educational outcomes continue to improve, innovations are always on the horizon, and Brian does continue to make his progress, step by step, albeit very slowly…

The lions share of this progress would also not be possible without the patience and dedication of the teachers who have been placed in our path, for they too, are “special people chosen to teach special children”. Ironically, I have an undergraduate degree in Special Education and a Masters in Elementary Education, but chose to work in the business world for many years first before finally coming home to the classroom. I initially taught high school Math and English for 2 years in the Resource room, before making a segue to elementary school as a Math and reading basic skills teacher for Grades 1-6 up until Brian was born. People often say to me that this background must have prepared me for Brian’s arrival, but nothing could be further from the truth. I had taught students who had mild learning disabilities, which is quite different compared to Brian’s issues. I was as equally overwhelmed, grief-stricken, and befuddled as most parents are when they learn that their child is born with a disability. I had absolutely no clue what to do in the beginning, and had to take things one day at a time. Fortunately, there have always been those exemplary teachers along the way that have been encouraging guides and in some cases, good friends. They have earned my utmost respect and my husband and I will be forever grateful to them for all that they do willingly and patiently for our son. This includes Brian’s current staff, for whom we are especially grateful for.

Brian goes to a private applied behavioral analysis (ABA) school for children on the autism spectrum. Most of the students who attend this school have complex challenges that require inordinate amounts of patience and dedication on behalf of the staff. I never fully understood exactly how much the staff did for the kids until I became involved in the school’s Parent Professional Organization (PPO), which is similar to the Parent Teacher Organization (PTO) in the public schools. I was the treasurer for the last 2 years and saw first hand how the financial resources of this organization were utilized for the benefit of the students. So many wonderful activities, field trips, and educational resources are sponsored by the PPO! Our kids receive educational experiences beyond the classroom that enriches their lives, as well as in-house resources that are necessary for their learning. It’s a great collaboration between Home and School for the common good of the students and also, I feel, an opportunity or a way of saying “thank you” to the staff for all that they do for the kids. It’s important that the staff know how much they are appreciated. I don’t know what we would do without them!

While not everyone can volunteer at school due to work and/or other personal commitments, there are still ways to support your child’s teachers that are much appreciated:

1) Communication- notes, emails, or phone calls to let the teachers know what a great job they are doing, and not just when there is a problem.

2) Homemade cookies or brownies- just because! You are thinking of them and took the time to express your gratitude.

3). Contacting your teacher’s principal or supervisor to brag about them- this is quite motivating- for anyone! 😊👍🏻

4) Attending school events/ teacher parent conferences- work schedules can make this impossible, but teleconferences can be an option! Any opportunity to support our teachers is a valuable investment for our kids.

5) Thank you notes mean a lot too, anytime of the year and for any reason!

Wishing all the women who teach special children, (whether you are a Mom, teacher, Grandma, Aunt, neighbor, or a friend), a very Happy and Blessed Mother’s Day! May you experience on Sunday all the love and joy that you give each and every day- thank you for choosing to teach and love our kids. Your vocation is certainly not for the faint hearted, in fact, many would not necessarily choose a career in special education. Yet, somehow you too, like we parents, are transformed for the better by our kids in ways that are extremely challenging, yet rewarding, step by step….

Until we meet again, thanks for reading! 😊

It’s already that time of year again. 

Brian’s case manager recently reached out to remind me that his annual Individualized Educational Plan (IEP) meeting is coming up. This will mark our 12th IEP meeting , with just 6 more to go. It’s hard to believe that Brian is already this far along with his formal education. In the blink of an eye, he has gone from 3 years old to almost 15 years old- when exactly did THAT happen? I shudder to think when the public school formally discharges Brian as their educational responsibility at 21 years old. This looms in the not too distant future, but I will not think about that any further today. Meanwhile, back in the present moment..

IEP meetings always cause me to experience a certain amount of angst, even after all of these years. Walking into a situation where the ratio of school personnel to parents is often 6:1, can certainly be intimidating, even under the friendliest of circumstances. I automatically have my guard up as I am carefully listening to the discussions about my son’s performance, concerns, and recommendations. I also find that I need to remind the group periodically that I am indeed a valuable member of the educational team and know my son better than anyone else  in the room. 😊👍🏻

The IEP meeting is the stage where parents give their best advocacy performance on behalf of their children to ensure that their educational needs will be properly met. It’s unfair that we sometimes have to go through so much trouble, time, (and sometimes legal expense in certain situations) to make this happen, but our kids are counting on us in this arena, as they do for so many other things that they need. Like other special needs families, we have had our share of ups and downs during this annual process over the years. 

Our initial IEP experience was very unsatisfactory and resulted in us moving to an area where there were more potential options for Brian within 30 minutes of our  new home. Since that time, Brian has been in 3 different schools, each with its pros and cons- there is certainly no perfect program. Brian’s transition from one program to the next was generally at the right time, based on: his particular needs, the experience and willingness of the staff, and what the school could offer. Most of our disagreements with the school district pertained to ancillary services ( like speech and OT), where they tried to reduce sessions, which is of course inappropriate for a student like Brian and his level of functioning in these areas. It took outside  professional evaluations, clogging up the Director of Special Services fax, and multiple emails/ phone calls to make my point, but we ultimately won those battles. I had an idea after those experiences what it must be like to be a trial attorney- research, fact presentation, documentation, and defense- it’s definitely not for the faint-hearted!

Experience has also taught me to pick my battles during an IEP meeting- how important is something? What’s an absolute deal-breaker? What will it mean next year, 5 years from now? That line of thinking has come with time and practice. My business background has also taught me the importance of professional negotiation. No one likes to walk away from the table without something in hand. Everyone likes to feel that they have “won” something. School districts and families are no different in this regard. Thankfully, persistence  and patience have also payed off in this area for those items that were non-negotiable for Brian, at least so far, but you just never know when things will change. It’s truly one IEP meeting at a time..

Quite frankly, I would love to skip the formalities of the IEP meeting altogether and just ask the most important questions: 

1. How WILLING are you to learn how to help my son? 

2. Will you take my advice and accept my suggestions? Will you go even further and implement these strategies?

3. Will you please communicate with me on regular basis (that is mutually determined) so that there are no surprises on either end? By the way, one paragraph, once a week, doesn’t count.

4. Will you please be honest with me at all times and tell me the good, bad, and the ugly? I don’t want to find out 6 months after the fact that there have been problems. I would love to hear about successes as much as the challenges.

5. Will you please  teach me so that I can teach my son?  I welcome your suggestions and want to follow through at home with what is taught at school.

Simply put, I Expect Performance (I.E.P.) from the school staff and district when Brian is entrusted to their educational care. As a former Special educator, I understand that they have a very difficult assignment. Teaching our kids does indeed take very special and skilled individuals who are not given a manual in advance. Teachers have to be flexible, creative, and patient- it’s one of the hardest jobs ever! I will support our school personnel one thousand percent, but I also expect their best performance in return.  If that is not possible, either the staff member (s) or the placement needs to go, plain and simple. Our kids deserve the opportunity to learn, just like everyone else!

On a lighter note, here are some things I like to do before, during, and after IEP meetings that have been helpful over the years (especially for those families just starting out):

1 . Discuss/Submit my own goals to Brian’s teacher and therapists before the meeting.

2. Request a copy of the proposed IEP prior to the meeting for review- if not available, I will wait until it is, read it carefully, THEN attend the IEP meeting.

3. I write down any questions/concerns in advance of the IEP meeting. 

4. I usually bring a snack to share ( ie, Dunkin Donut munchkins) as a tasty icebreaker to the meeting. 

5. I send thank you emails post-meeting for everyone’s participation and as a reminder of what was agreed upon.

You are to be commended if you have read this far on today’s blog. Thank you for following along! I wish you only the best outcome at your child’s IEP meeting. Our kids are worthy of a performance-based education, no matter where they go to school, nothing less is acceptable!

Until we meet again- many blessings on you and yours! 😊👍🏻

Brian’s School Picture 2017 ❤️

One of the greatest joys EVER in Brian’s life is taking a shower. If there  was a contest held for the longest shower ever taken, he would win, hands down!  All of us know how refreshing it is to take one, but Brian takes this activity of daily living to a deeper and more meaningful level. He is genuinely happy,  squealing with delight as the warm water from the shower head and shampoo massages his scalp and simultaneously adores the loofah on his skin with either a grapefruit or coconut body wash. Removing Brian from this aquatic paradise always requires an emphatic assurance that he will soon return to his second home.

Can you recall the last time when you felt that child-like joy over something so simple? I must confess that I can’t remember, it’s been that long!  This winter has been wearisome, with its perpetual precipitation, cold temperatures, and constant illnesses. Springtime continues to elude us all, but I heard a rumor that it will return sometime soon. Lots of homebound days does not make for joyful families, especially when our kids ( and we parents!) need their routines. Off routine often means difficult behaviors, frustration for all, and the inclination to run away sometimes. I know I have certainly felt this way.

Since running away from home is not an option, I am on an eternal quest to find ways to be content, and joyful (at least a good portion of the time), especially when difficult circumstances want to rob me of those things. Please don’t get me wrong- it’s impossible for anyone to be happy 100%of the time, but I do believe there are ways to live “above the hardships” that are a constant part of our daily reality, as much as the joys are a part too. I must make the effort to look for those moments of joy and make them my own, and Brian will gladly show me the way if I am willing.

I have concluded that Brian’s severe disabilities protect him from ever hating anyone, becoming jaded, or being unkind- the ideal qualities of a joyful person! It is simply  not in his DNA. My husband jokes that Brian will never do “25 years in the Pen”. He is sweet, very trusting, and  a loving young man, and always will be. And of course he also has behaviors just  like everyone else. We worry of anyone ever taking advantage of him in any way, just like other families do. These concerns always lie just beneath the surface and are lifelong. But who knew there would actually be “advantages” to being disabled, and they just happen to be those particular qualities that all parents  would want for their children. Our kids just happen to have these gifts naturally and are Ambassadors of Joy to others in each of their own unique ways.

Brian’s other expressions/moments of joy include:

 His bear hugs (like you’re his best friend that he hasn’t seen in 100 years!❤️)

His  friendly waves to everyone, everywhere! (he often demands a return wave 🤣)

His love for chocolate pudding ( Jello is responsible for creating these infectious smiles 😊)

Storybook Time before bed- we are now up to 6 books before bed- Brian has his favorites for sure! He has loved being read to since he was only months old. It’s a bedtime ritual that we have  treasured for years. Brian loves to snuggle close while reading and is just delighted, like it’s the first time that he has ever heard these stories- trust me- it’s not! 🤣🤣

Music, Music, Music! – Anytime, Anywhere, from Classical to Classic Rock, Brian loves music much, always has, though we were stuck on Toddler Tunes for quite a few years! I think Music in particular speaks to his heart and soul in ways that we don’t fully understand, with a joy that is palpable!

Water World- Brian’s love for water extends well beyond the shower at home. He loves hotel showers too, swimming pools, indoor or outdoor, and the ocean. Brian was afraid of the ocean when he was very little, but now, he communes with the waves in a such special way that I believe this Happy Place makes him the most joyful of all. Others have observed the same and have often brought it to our attention. 

Just writing about these things encourages me to be joyful and is a  reminder of how our minds can be “trained”, like a muscle, to focus on the good.  Joy, like happiness, is also a choice, like so many things in life. For years, I focused a lot  on the “negatives” as they pertained to Brian’s disabilities, (especially in the early years) mostly out of grief and fear. While it’s perfectly natural to react this way to a major life-changing event, the key is to acknowledge, but not to remain in the grief for too long. If my grief had the ability to reverse the permanency of Brian’s challenges, I certainly would continue, but since that is not the case,  I can’t afford to make myself sick. I would then be of no use to Brian, my husband, or myself. So, I try to continue to acknowledge the fear or grief, “feel the feelings” for just a spell,( we are only human after all!), then make a conscious decision to move on.  Life is truly too short not to- this becomes even more relevant as we become older along with our kids.

Our joy as special needs parents is certainly not limited to just our children. We sometimes forget that we were (and still are) unique individuals with our own interests, hobbies, etc. BEFORE we became parents.  While it’s more difficult to make the time for ourselves, we must somehow carve out some time and engage in those pursuits that also bring us joy. I am working on that myself and have very recently rediscovered my love for playing  a portable keyboard, (just some very basic tunes/scales and singing along). It’s amazing how freeing singing can be, by the way, and can help you forget about things that are out of your control…

So, what brings you joy? What will you choose? How does your special son or daughter express their own joy?  I wish us all many joyful returns, especially during those difficult times  when  joy seems to elude us all together, but we choose to seek it out anyway.

Thank you for reading- until we meet again, many blessings on you and yours!

❤️😊👍🏻

These days, every meal is like “The Last Supper” as far as Brian is concerned. His appetite is voracious, with a bottomless pit that never ceases to amaze! Puberty and youth are the perfect storm for such a siting. I remember those days so well when I could eat like that and never gain an ounce, ah, to being young like that again! Brian has certainly inherited my capacity for mass quantities of grub, for better or for worse. 

Once upon a time, Brian couldn’t be in the same room with different textured foods, let alone eat them. He would scream bloody murder at the mere suggestion of some new food , no matter how small or how far away it was on the table. I was both horrified and fascinated at the same time- how can this kid not like toast or pizza? Forget about cake or cookies at that time. And don’t even think of offering the generic version of Cheerios- only the original will do! How can one make THAT differentiation?! There were many days that I  thought Brian was  destined to eat Cheerios, French fries, and yogurt for the rest of his life. Despite our best efforts, nothing seemed to be working. It was so frustrating! I was really concerned Brian would be more prone to illness, with such a limited diet at that time. He had already been struggling with multiple sinus/ear infections, and colds.

But like everything else in Brian’s life that is “ new”, as far as he was concerned, he required LOTS of time and small pieces of evidence in order to be convinced that “it” is OK, acceptable, and in this case, tasty. So, we did many food “trials” over the years, ever so slowly, and with lots of practice, patience, and behavioral reinforcements. We began to make some progress over the years, continued to expand upon our success, food by food, bite by bite. When adolescence arrived, Brian’s hunger increased, and he was more motivated to try new foods, despite the visual and tactile sensory aversion to them. Somehow, he seemed to gain some self-confidence too in this culinary journey. Now, he has no “off button” for toast or pizza, or several other foods for that matter!

Don’t get me wrong- Brian will not automatically eat any  “New” food-even now. He continues to be quite wary of its appearance, very tentative of its texture/flavor, BUT, he will at least try the smallest of bites. He has really come a long way from the meal meltdowns of not so long ago. I understand more why this is so- not only do some children with special needs have sensory challenges with eating, but people with Down syndrome in particular, have chewing challenges due to their low muscle tone and compromised  oral/motor musculature. As a result, they have a heightened “gag reflex”and are more prone to choking. We often have to remind Brian to take small bites, chew his food, slow down, etc.  Our kids like to sometimes “stuff food”- it feels good to do so! ( I must confess to the group that I love to stuff a stack of Pringle’s potato chips in my mouth- there is something about that Big Crunch/Flavor that is so appealing!).

Brian still does not eat ice cream ( too cold), candy of any kind ( the texture does not agree with him),or fresh fruit, ( the “slimy” texture causes him to gag, yet he loves many veggies, go figure!)but unlike the old days, I am much more relaxed about his eating habits. At some point, he will probably LOVE ice cream and candy, (where we could have another problem!)and he may even one day be willing to eat an apple slice. In the meantime, there is applesauce, and he will eat mandarin oranges or mashed fruit in yogurt. I’ll take whatever he is willing to try!

Good nutrition is paramount to a strong immune system, but there are also excellent supplements to support our picky eaters when their diets are limited. There is always hope for improvement in this regard, but we parents have to give ourselves (and our kids) a lot of slack, regardless of the outcome. Heck, my  older neuro-typical brother is  still a picky eater (especially with veggies) and somehow, he has made it through life just fine! Quite frankly, we have too many other fish to fry with our kids that requires our undivided attention and energy. Speaking of fish, Brian remarkably eats salmon now, so you just never know how or when our kids will surprise us with their food choices.

Brian’s willingness to try and eventually enjoy new foods over a long period of time has also coincided with his ability to now sit with us ( and extended family  and/or friends) during meal times. We are now able to go out to restaurants and actually enjoy our meals together. No more crying at the dinner table or being prisoners at home because we had to leave the restaurant, me in tears often along with Brian. I know many of you can relate to these things and can appreciate how incredible these accomplishments are. The highs are higher and the lows are definitely lower in our world!

And what a better time for our kids to enjoy culinary delights, regardless of what they are, than this upcoming weekend, as many of us will celebrate Passover or Easter with family and/or friends. One of life’s greatest pleasures is to sit and enjoy food  with our loved ones, a ritual as old as the hills. There was a time that Brian could not sit at the table during the holidays, but that too, has become a thing of the past. He does not linger too long after eating, in fact, he gets up, pushes his chair in, then proceeds to watch TV or play with his iPad, just like the other kids…❤️❤️

Wishing everyone a very blessed holiday this weekend and much success on their food journeys with their children, one bite at a time….

Until we meet again, thanks for reading! 😊❤️

During one of Brian’s recent medical appointments, I was chatting with one of the nurses while we were waiting to see the doctor. She mentioned in passing how much health care has changed, as well as her role,  and eventually commented  how lucky I was that I didn’t have to work outside of the home anymore. “Actually, I quipped, “I do work both inside and outside of my home and work just as hard as before, the only difference now is that I don’t get paid for it”.  This lovely lady was clearly puzzled by my response. Let me explain…

I had worked as a full time professional for almost 20 years before Brian’s birth in various fields and capacities , including: flight attendant, pharmaceutical sales rep, medical education project manager, a special educator in the public school setting, (and more recently  a special needs teacher in our state’s Early Intervention system).Variety has always been the spice of my life and I enjoyed the rigors of these positions. The hours on the job for each were long, often intense, sometimes frustrating,( just like any job), but generally satisfying. I also earned my Masters degree in the evening while working full time.  I’m glad that I had the opportunity to try different careers and to go to graduate school during this phase of my life . But being Executive Director of Brian McDonnell, Inc. has been the most challenging, sometimes extremely frustrating, yet very rewarding, as far as “jobs”go.

I  still marvel how my world has gone from previously traveling around  the globe, to presently traveling around town most days. Life can certainly be unpredictable, filled with its twists and turns, and often with lessons to learn along the way. I have learned so much from my  many mistakes and triumphs throughout this journey, especially the current one that’s exclusively with Brian.

Sometimes, however, I do miss the freedom of the old days and will be struck by wanderlust to explore beyond the confines of local roads. I will coincidentally have an opportunity this year to travel, first with friends, then a separate trip to Disney World with my husband and Brian.  These are great things to look forward to and all of us need  a break from time to time for our mental sanity and for physical rest. But until then, there is a daily routine that must followed for both Brian’s benefit and my own. In the special needs world, I know that I am in good company in this regard.

I have calculated that I have 14 hour “work days” from the moment I get up, until I sit  down in the evening after Brian goes to bed.  First shift is during the day starting in the morning, until Brian comes home from school. During this time, I help Brian get ready, make breakfast, pack lunches do household chores, shopping, and any communication, advocacy,  research, as it relates to Brian’s well being. Communication, whether it be written or conversational, is time- consuming. In between, I try to get a quick workout in and help my Mom with her errands/medical appointments a day or two per week. It’s amazing how quickly the 6 hours elapse while Brian is at school! Before I know it, the bus aide calls to say they have arrived back at our house.

Second shift begins after school when Brian is home, which is pretty much helping him until bedtime with all aspects of his routines. When the home therapist come after school for a few hours, I am often doing volunteer work for Brian’s school, catching up on more correspondence with his school, social, or medical contacts, filling out countless forms for camps, etc. Then comes making dinner, clean-up, stories, Brian’s bedtime routine, then done- whew! I am tired and usually ready for sleep myself! 

Every family has unique circumstances that warrant an arrangement that works best for them. In our situation, my husband was always the primary breadwinner- had the roles been reversed, he would have been Brian’s primary caretaker and Domestic Engineer, while I worked outside of the home. Jim works hard and long hours so  that I can be home for Brian. We usually don’t see him until close to Brian’s bedtime. Some work days are later than that, plus he travels frequently overnight  for his job- this is the down side with a lot of corporations, lots of hours away from the  family. However, the up side is that I am on call for Brian 24/7- whether it’s school vacations, snow days, (this winter was particularly brutal!) or for illness. Brian has a lot of all of the above, so Jim can have peace of mind that I am there to mange things like this as they occur, no matter where he is.

It would be difficult to find a caretaker who could manage all of Brian’s particular  needs especially during those critical times of the day: before the school bus in the morning and after school. This is a struggle for many single and 2  parent income families- parents have to be out the door for work first thing in the morning and they need care for their special needs child then, as well as  after school.

Or what happens when your child suddenly gets sick and you have an important business meeting? Don’t forget school breaks and summer vacation. Not everyone is equipped to handle our kids unique needs. Good, reliable people are hard to find. Some families I know have extended family who can help. Others rely on trustworthy friends or neighbors. 

Employers are not always understanding of a special needs situation at home either. Sometimes people lose their jobs because they used all of their allotted vacation days to take care of their sick child. Some Moms would love to stay home, but can’t afford to. Others want to work,  but it’s so hard to find a job with the hours that mirror our kids schedules and that would allow for very flexible hours that we ( and they) need. I suppose a part-time job with  these specifications would be ideal with plenty of personal days to spare. There are sometimes no easy solutions.

As you can see, all Moms are working, whether in the office, or on the home front, with hired help, or the Moms are the help. Both scenarios have pros and cons to them,  both also require a lot of understanding, negotiation, and support from employers, spouses, caretakers, and extended family. Moms are the leader of the band! So much is expected from us because we  often make it look so easy and get so much done.

Raising a child with significant disabilities is a job that requires me to be at home for my son because he needs me to be there for him. There is a lot to manage in Brian’s life and I see that it will only become more complex and time-consuming as he gets older. My workplace just happens to be my homeplace, with long hours, and constant demands, but…I wouldn’t want it any other way. 😊

Thanks for reading! Until we meet again, many blessings on you and yours!😘😘

 

Last week, I had an opportunity to share my journey as a special needs caretaker to the United Way Caregivers Coalition Of Morris County.  Boy, was I nervous! I consider myself to be more of a writer than a presenter, but was proud of myself for actually trying, as I hadn’t done any  public speaking since college. Even better that I actually made some sense! Here is the transcript from that day…

My name is Brenda McDonnell and I am the primary caretaker of my son, Brian, who was born with Down syndrome, then diagnosed with autism at 30 months old. Brian is now 14.5 years old, and the light of my life! Brian will always require caretaking and his needs are many and varied. I have been a caretaker for both of  my parents as it pertained to their physical and emotional health, but nothing compares to the daily caretaking of a child with special needs. It is a lifetime assignment that requires great physical, emotional, and spiritual strength.

Nothing ever quite prepares you to be a parent either, as I quickly learned when Brian was born, despite the many books I voraciously read ahead of time. I was on bedrest in the hospital for a month prior to Brian’s birth and had lots of time to read and contemplate what motherhood would be like. The perception and actual reality of this experience couldn’t have been more different. Brian’s arrival into the world was a mixture of great joy, sadness, and fear, of both the unknown and what my husband and I knew would be challenging. 

Brian was born with a large hole in his heart that required open heart surgery at 3 months old. And so our eventful journey began with a plethora of appointments, sleep deprivation, and learning step-by-step how to take care of this precious baby. More medical issues were to follow, then learning the ropes of Early Intervention Therapies, Special Education, social activities for special needs, etc. So much to learn and navigate through-and  it continues to be an experience like no other! 

Brian is my best teacher and has demonstrated through his incredible resilience and sweet nature how to be courageous and strong many times over these past 14+ years, especially when I have been often  afraid and heartbroken. If you had  asked me when Brian was first born what I had envisioned parenting a child with special needs was going to be like, I would have never imagined it was going to be this hard. I didn’t realize that  the smallest of achievements would always  be so monumental in our world.  And who would have ever guessed that my son  would still need assistance in the bathroom at 14 years old?  I never thought in my wildest dreams that Brian would be non-verbal either- how is this even possible when he comes from a long line of gregarious talkers? And on and on the list goes..

I also never imagined that I could or would be the advocate that I am today for my son. By the grace of God, the support of other local special needs families, and through the encouragement of my husband, family, and Brian himself, I am able to forge ahead. Brian has a rich, full life with educational and social opportunities. I go to sleep most nights at peace, knowing that everything is being done to help Brian live his best life, at least for the present time. The future is what is really scary. We specifically moved to a particular area to provide those opportunities for Brian. It has and always will take a lot of people and resources to help us, help Brian.

Of course there is a high price to be paid for caretaking and advocating over a long period of time.  Physical and emotional depletion are inevitable, especially after many years. There are many days when I still feel very overwhelmed by Brian’s needs and am afraid of the future, especially when my husband and I are no longer here. The challenges threaten to overtake the day, yet they can not ultimately be victorious. I may lose the battle ( which has happened numerous times), but I can not lose the war- Brian is counting on me. Daily self-care is a must- did you know that my caregiving needs come in a convenient” 6-pack” ?! Here they are:😊👍🏻 

Brenda’s Caregiving Needs

1. Respite- a break in any form/ for any length of time counts and is necessary for recharging physically/mentally

2. Sleep- a very basic need, but often underrated for its amazing effect on energy and perspective 

3. Reading-A good book is my mental escape, especially when the going gets tough- I try to read something not Special- Ed related every day for 30 minutes- it really helps me to stay in the present moment!

4. Exercise- Planet Fitness is less than 2 miles from my home- exercising even 30 minutes, 2x per week, changes my mental outlook

5. Gal Pals- Loyal girlfriends are the best elixir for the heart and soul. They are your anchor in a storm, always have your back, and protect your  tender heart. I am blessed to have such friends.

6. Cocktail- Never underestimate the power of a glass of wine at the end of a tough day in the special need trenches! 

Once I take care of myself, I am able to share some valuable lessons I have learned along the way. Brian has taught me so many! Here are a few: 

Lessons Learned As A Special Needs Mom

1. You can’t be a perfectionist and a Special needs parent simultaneously. Our kids do things in their own way and and in their own time. Expectations must always be very flexible with our kids and ourselves.

2. I may often feel isolated , but I am never alone. God is with me and so are many other special families, who understand these feelings, even though the struggles are often very different. 

3. Laughter continues to be the best medicine.

4. I must have time alone- sometimes it’s in the bathroom with the door locked!

5. While Brian’s needs are complex and life-long, he was created, like all of us, with a great purpose by God. Brian has impacted the world in a wonderful way just by being himself and is accepted by most people he encounters for who he is.

6. Crying is good therapy, whether alone or with a trusted friend. Life can be really  hard with our kids sometimes and we need a “release valve” in order to move forward. I know I certainly do! 

This concludes my lessons learned as a special needs Mom caretaker and this particular blog. If you have read this far, I applaud you! Many blessings on you, until we meet again. Xoxo 😊

In the previous blog, I had presented the first 2 of 12 steps that have helped me daily in my journey as a special needs Mom. These 12 Steps are modeled after those  founded in  the Alanon Program, but they can really be applied to a myriad of life challenges. I have learned the importance of having a “toolbox” that can be used when the going gets tough both in the short term and for the long haul. Some days, these steps are all I have left to cling to.  So, let’s continue….

Step 3 

Made a decision to turn my will and my life over to the care of God as I understand him.

This is a conscious and daily decision for me. It does not come easily! I am used to taking charge and managing all aspects of Brian’s life, aka, being an advocate for my son. I make numerous decisions for him regarding his physical, educational, and social well-being. It is a lifelong venture that is relentless,  sometimes exhilarating , and often exhausting. I am depending upon a lot of people to help me help Brian. It really does take a village  to raise our kids! In the process,  I can get easily overwhelmed and most certainly have over the past 14 years. It does not get easier as our kids get older, as there are always additional challenges and concerns. I have sometimes been literally on my knees asking God for help when it all becomes too much. I believe, but was not really trusting my Higher Power. My faith needs to be strengthened to know that somehow, everything will be OK, even when at the time of crisis, things appear  so hopeless. I often think about Brian’s future when my husband and I are gone and become paralyzed by fear. I try not to do that and just live one day at a time, but it’s not always possible. This is where the conscious decision to trust God and turn my will, and all of my concerns, over to His care comes into play- even when I don’t feel like it or believe, but realize I am at the end of myself… If I do my best, He will provide the rest, whatever I need, not  just for Brian, but for me too, in all areas of my life. These things don’t happen according to my timetable of course, lol, but I have learned and have seen over and over again in my life and in Brian’s, that God is faithful and trustworthy in His provisions of the people and resources that are needed, whether for Brian or  for myself. .It’s good to know that we don’t have to carry our burdens alone- I am really relieved quite frankly!

Step 4

Made a searching and fearless moral inventory of ourselves 

I find this Step to be quite intimidating because it requires me to be totally honest about my motivations when I do things for Brian. Is it always in his best interest or am I just doing something to make me feel better? It’s an ongoing struggle.. One area in particular that I found difficult to reconcile for the longest time was Brian’s academic abilities. I was never under any grand illusions that Brian would be star student, but I assumed he would at least know his letters, numbers, be able to read and write, etc. I thought he just needed extra time, a better teacher, a new learning approach etc. I pushed very hard in every way imaginable to make this happen for a long time… However, every Individualized Educational Plan (IEP) over the past 11 years has shown only minimal improvement in “academics”overall-ouch-that’s been very painful to read and accept- but only for me- not for my son, and THAT is what really matters! I realize my background as a teacher and a Mother’s heart are the reasons for my disappointment, however, it doesn’t mean that Brian has not learned some of these basics and will continue to- he has! 😊 He has also shown a stronger aptitude towards vocational education and is doing well and is learning! I have learned (and continue to learn) to adjust my expectations and  to focus more on Brian’s strengths, as it should be. The same holds true for community activities, sports, etc. I want Brian to be exposed to various things and to try them, but I look at MY motivation first now  before doing so- is this in Brian’s best interest? Is it worth it? How important is it really?  Will it ultimately make a difference in his life or make him happy? Often we need time and practice to do new things for a while in order to answer these questions and if I pay very close attention to Brian, he will often tell me very clearly  himself what he wants to do! 😊👍🏻

Time for a Blog Break! 👍🏻 Four Steps down and 8 more to go. Thanks for reading up to this point- many blessings on you, until we meet again. 😊

Everyone needs a 12 Step Program- you’ve heard it here first! And perhaps no one needs this more than special needs families. But what exactly does this mean?  How would 12 Steps make a difference in my life? Now, you may or may not agree with this premise, or even understand what  I am saying, so let me further explain.. 

I’ve attended Alanon support group meetings for many years  in order to understand those beloved ones in my life who struggle with addiction, as well as those who are now  in recovery. The Alanon program is based on 12 powerful, life-changing principles. These steps are truly “a blueprint for living” for those of us who have been profoundly affected by the addictive behavior of others. Over a very long period of time, I slowly came  to understand  how my own behavior could also have a positive or negative impact on these relationships. I also learned  what creating healthy boundaries with others meant and how to take care of myself. It was all about “keeping the focus on me”and not interfering in others affairs. This was definitely not easy! I wanted to give unsolicited advice to be helpful,  but I learned repeatedly that this practice  would hinder the recovery process. Over time, I realized that these same 12 Steps could also be successfully applied to other  life challenges. Sooner or later, each one of us will need a life raft to navigate stormy seas, lest we drown…

It was during a low point last winter,  when  I realized that the 12 Steps could be my roadmap to parenting my special needs son. I  had felt a great deal of despair  and  depression earlier this year- the dark, cold weather certainly didn’t help, but it was much more than that. My husband travels frequently for work and during that particular time, he was in Japan.  The long distance exacerbated my loneliness and feeling of isolation. Brian was having severe sensory issues and transition problems last winter. The school day was being adversely affected, as well as the Home Therapy program during this time. Brian kept throwing things, turning lights on and off, getting frustrated, etc.  I felt so utterly powerless and out of control. It’s especially during moments like these that I wish with all of my heart that Brian could just speak- any words at all! Like a doctor, I just wanted to “cure” my son of what was ailing him in that moment. I fell asleep hard one night  out of sheer exhaustion and really did not want to get out of bed the next morning. Once I got Brian off to school, I went about my daily routine and happened to open up one of my Alanon daily meditation books to the page where the 12 Steps were listed. Although I had read them hundreds of times before, this time, my interpretation of what I was reading was different..Call it a “light bulb moment”( I truly believe it was Devine Intervention), but I was prompted to go back to the Alanon 12 Steps and read them again, gaining a new perspective..I concluded that these very same steps could be applied to raising a child with disabilities. Or any major challenge in life quite frankly, but since this is a special needs blog, I will explain from this point of view, so here it goes: 

Step I

“I admitted that I was powerless (over Brian’s disabilities), that my life had become unmanageable.”

This is absolutely true.  I am powerless over my son’s disabilities; I can’t make them disappear. I wish I could! The fact that I can’t frustrates me, especially when Brian is adversely affected by his challenges. I feel life becoming unmanageable when these episodes happen. I hate that out of control feeling, but, I have to remind myself that I am not helpless. I try to provide my son with the love, support, and resources that he needs, to be the best person that he can be- this is emPOWERing. My life becomes more manageable when I know I am doing my best, one day at a time. It’s all about progress, not perfection. I must remind myself of these truths when the going gets tough. Feelings are not facts.

Step 2

“Came to believe that a Power greater than myself could restore me to sanity”

I believe this with all of my heart, even when I don’t feel it. I call this Power greater than myself, “God”.  I have seen evidence of God’s Power throughout  my life, both in trials and tribulations. I believe God restores my sanity in the special needs journey with Brian and will always continue to do so. He made  Brian, loves him more than I can imagine, and has created him with great purpose in mind. I have been privileged to witness Brian’s powerful impact on others, just by being who he is. Most of these encounters have been heartwarming, but certainly not all of them. Regardless, I see and understand that Goodwill Ambassador Brian has an important job to do during his time on earth, and is a vital link in the chain, just like each one of us. I cling to these truths like white on rice and remind myself of them when I feel I am going insane during those very difficult times. Like a new exercise, it takes time, patience, and practice for these things to take root. I’m relieved that I can be restored to sanity, well, at least most of the time! 😊

If you have read all the way to this point, you are to be commended!  I will continue with the remaining 10 Steps in the next blog and pray you may have been encouraged in some way by this one. Until we meet again, thanks for reading! 😊👍🏻