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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Just a brief blog from the heart-this weekend we will honor Dads across the country for their commitment to loving, providing for, and supporting their families in many different ways, all year long! I was very blessed to have had a Dad who did exactly those things for his children to the best of his ability. My husband, Jim, is exactly the same in his demonstration of love, support, and provision for Brian, (his Dad was too with Jim and his siblings), along with many Dads who we know. I believe our special children understand these remarkable qualities, even if they can’t say so, but they absolutely KNOW SO!! I see it when Jim and Brian share time together; they are best friends, Home Depot Brothers, Book Buddies, and have a “male bonding” that is so close- girls keep out!! I was very close to my own Dad and shared a similar bond with him that lasted until he passed away . Dad left behind this beautiful legacy for his family and a love so strong for Brian, that it’s easy to see why Brian is a happy/lovable guy ( at least most of the time)- it’s generational!

We also honor on Sunday the strength, love, and dedication of those men who have given of their time and talents to our special children. That’s everyone from extended family/friends, teachers, aides, and therapists, to the coaches, mentors, and volunteers- thank you from the bottom of our hearts for being such an integral part of our children’s life journey. You are wonderful role models that our kids need to be with. You are patient, kind, and tireless with your efforts. You have given our kids opportunities and relationships that they wouldn’t otherwise have had. You are are our rock and we can count on you. Your presence in our kids lives means more than we can ever fully express…you are also the mighty men!! You have our deepest gratitude.

God Bless our Mighty Men! May you be spoiled rotten this Sunday with all of your favorite things by the people who love you. It is well deserved! Thank you for the love and legacy that you are passing on to the next generation, especially to our kids, a priceless gift that keeps on giving…Happy Fathers Day! 😘❤️😊👍🏻

Until next time, thanks for reading!❤️😊👍🏻

Hear ye! Hear ye! On the 6th day of June 2018, Brian Michael McDonnell independently completed all of the steps required for a successful bathroom experience at home! Like the American colonists who were under British rule for almost 200 years before they finally gained their independence, we too, had our “July 4th Moment” on Wednesday afternoon when Brian executed all of the steps necessary for toileting at home after 12 years of training ( though it certainly felt more like 200 years !). What a feeling of freedom and victory, something I’m sure our forefathers also experienced back in the 18th century, though certainly for much bigger reasons! Having said that, independent toileting is a HUGE deal in our world; it is momentous and life-changing for all concerned. I feel that such a weight has been lifted off of my shoulders; what a relief! We celebrated last night with brownies and pudding, giving this milestone the proper celebration that it truly deserved.

Now I pray that Brian will be consistent in using the bathroom on his own and learn to generalize this skill outside of the home. For years, Brian has been like a camel, refusing to use the bathroom at school. (This makes absolutely no sense to a menopausal woman with a bladder the size of a peanut, but I digress… ) The jury is still out on whether this is a sensory or a control issue; I happen to believe it’s a combination of both. It makes sense for a non-verbal child to want to exercise control over one of the few areas of his life that he can and sometimes scares his parents to death in the process- like the emergency room visit at the hospital 3 years ago when Brian hadn’t urinated in 16 hours! Talk about frightening- blood work, a renal ultrasound, and exam determined everything was just fine, and yes, Brian FINALLY voided, shortly after the doctor told us that a catheter was in Brian’s future if he didn’t perform. Somehow, Brian must have understood this and that a catheter wasn’t going to be fun. The Versed ( a drug for conscious sedation) that Brian received prior to the blood draw was so effective, that they could have taken all of his blood, he was so happy and relaxed! I decided to seize this rare opportunity and trim both his nails and hair while he was in this state. I had grabbed the nail clippers and manicure scissors before we left for the hospital, because I knew Brian would probably receive Versed or something similar to calm him down. Both the nurses and the attending physician were amused and impressed by my full “spa services”. 🤣

We Special Parents are used to multi-tasking and are experts in defusing difficult situations for our kids, preferably as soon as possible and without screaming. Necessity was definitely the mother of invention that day in the hospital. A happy ending of urination, normal kidneys and blood work, along with clipped nails and trimmed hair made for a perfect ER experience, lol! I laugh now, because I can, but it was certainly a nerve-wracking ordeal to go through. Fast forward 3 years later to this blessed day , which gives me hope that other basic skills will also come eventually in their own time. Sometimes hope and humor are all we have left as we wait, especially when our kids progress has plateaued, those “watching the grass grow”, kind of painful moments, like toilet training for over a decade. The teaching, the repetition, and the waiting, are the hardest and most mentally/ physically exhausting parts of this parenting, especially as I am getting older and Brian is getting bigger. This is the reality of our journey, but I don’t want this fact to rob me of my joy in the present moment. Such milestones are too important and deserve my undivided attention and elation. I have earned this accolade as much as Brian has.

I am pleased to report that Brian has very recently started to use the bathroom at school as well, though he still requires reminders. Right now, it’s just a few times a week, ( otherwise he still holds), but it is a start… and I will gladly take it! Welcome to our world, where the highs are higher and the lows are lower, and where no small achievement, even going to the bathroom, is ever taken for granted! We are often forced to live in the present moment with our kids, sometimes very painfully, but always fully and often with joy. As our children continue to declare their independence in all things great and small over the course of their lifetimes, I am constantly reminded that we are in a marathon, not a race. The moment I take my focus off this truth is when I get into big trouble both mentally and emotionally. I have spent too many years in despair over the challenges that I can’t fix in Brian’s life , so I am trying to surrender control one day, even one moment, at a time. I will tell you that it’s a better place to live in and is only made possible by the grace of God. I really don’t want to live anywhere else!

Until we meet again, thanks for reading! 😊

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! 😊❤️