Tomorrow Brian begins his final year of special education. He has been on break for the past 17 days, so I am actually relieved, as both of us are waterlogged from several pool days at this point. Both of us need to get back to our routines for our sanity! Brian will be in a different building in a new classroom this time. Transitions are definitely not his strong suit, so I do have some angst about that and how he will ultimately fare..

Fortunately, Brian’s beloved one-on-one aide of the past few years will be with him in his final year. I am relieved that Miss Kristen will accompany Brian to his new classroom. She will help him to navigate an unfamiliar environment with great patience and love. It’s one less concern that I will have, knowing that Kristen will be the conduit between Brian and the new staff. Thankfully, we still have the same bus company/ driver, a huge relief, and one less headache.

So the countdown of Brian’s last school year officially commences in the morning , but this fact has not caught up with me mentally or emotionally, even though intellectually I know this day was going to arrive “some day”..The hot/ hazy and lazy days of the Summer are encouraging me not to ponder this fact right now. This season goes so quickly and it’s best to enjoy the longer days and warm weather while it lasts. Lots of people take vacation time in July and August for these reasons, forgetting their daily responsibilities for a while. I plan to do the same and can prolong my denial, at least for a while longer…

In the meantime, in preparation for next July, I had seen 9 adult day habilitation programs for Brian between April and June of this year. I took notes on each one, observed carefully and asked lots of questions about each facility. I wish I could say that I am super excited by what I have seen, but that would be untrue. Words like: ambivalent, depressed, sad cautiously optimistic and hopeful would be more accurate descriptors, depending on the program. I have seen a particular feature in most of these facilities that I wish I could place all under one roof, truth be told.

The reality is that having everything you want is not possible, and ultimately I will have to choose a program for Brian. It’s a difficult decision to make- you pray you make the right choice. I recognize that Brian’s needs are many and most adult day hab programs are not designed to accommodate significant disabilities due to less staffing and resources, so there’s that… Plus super long wait lists…This is truly a faith walk of epic proportions.

As many families will tell you, the transition from special education to the adult world is like falling off a cliff without a safety net. I feel like I am about to fall, but holding on for dear life and ultimately trusting God to be my parachute. It’s so hard to let go…Wherever we end up landing , I have to believe that it will be OK, even if I don’t feel that way at this particular moment. Now I can fully understand why change is so difficult for my son and how it can make one feel so powerless..

I have a few more adult programs to see in the Fall, then a decision to make, but not today… On this hot and humid July afternoon, more important things like keeping cool and eating ice cream are top priorities. Enjoying the light warm days/evenings of Summer while they last is essential, for Fall always arrives too soon. Getting Brian ready for his first day of Summer school tomorrow is what we are focusing on at the moment: ie, getting clothes ready for the week, lunch box snacks and a note for the new teacher. Returning to a school routine is the best gift for our family and I look forward to taking some respite time.

Next month, Brian will celebrate his 21st birthday- where has the time gone?! There have been lots of ups, downs, highs and lows over the years, as well as many reasons to celebrate our son’s amazing life journey. He continues to inspire us with his courage, love and trust, despite his many challenges. In my times of doubt, I need only look to my son as an example of how faith in action truly works, for he lives it daily and wholeheartedly. ❤️❤️

Until next time, thanks for reading! 😊

“Twenty One and Done”- or so I thought, while recently reflecting on Brian’s journey towards adulthood. While in theory this is true, as special education terminates at this point, the reality is a whole new unknown adult world for the disabled , filled with as many scary (however different) things compared to those early years when our kids were just babies. In some ways, it was easier back then. All babies need love, food, medical care and attention in order to thrive and our children are no different ( though Brian and many kids do have many medical issues associated with their disabilities from birth that are challenging ).

As the years pass, the divide between our children and their typical peers becomes more pronounced in all ways imaginable. We worry, we advocate, we persist and ultimately make sure our kids get the therapies, education, and social/recreational opportunities that they need in order to learn, have fun and be included. We parents keep the pace going for quite a long time with all of this until we no longer can…Reasons for this vary: our kids outgrow certain activities or are too old for them. The opportunities themselves no longer exist or we don’t have the same level of energy ourselves that is required to help our kids with school or recreational stuff. Covid certainly didn’t help! I often wish now that I was like the character Benjamin Button who gets younger as time goes on, as Brian gets older and stronger. I am afraid of the day when I can no longer take care of him due to age or my health. I try not to think about this too much, but this reality lurks just below the surface, just enough to remind me that this day will eventually come…

In my darkness moments, especially as I get older, I bargain with God sometimes and ask Him to grant me one of the following scenarios: 1. Please let Brian and I go to Heaven on the same day. 2. Let Brian go to Heaven first so that I don’t have to leave him behind. 3. Whoever goes to Heaven first, the other must follow in 24 hours, (similar to what happened to Debbie Reynolds and Carrie Fisher). I’m glad that God understands my heart and my fears and knows what I’m going to say even before I do. He also knows exactly when the ending to our earthly story will happen. Just like everything else in this life, I must trust Him for all of the details, especially when I feel anxious, particularly right now. I have learned numerous times that life is much more peaceful when I put my fears in what I call a “God Box”, let them go, and entrust the end results to Him. I do gain courage and strength in ways that I never imagined when I am willing to do this, but it doesn’t mean that my feelings disappear. Feelings are not necessarily facts, but they do remind us that we are human. Right now, I am definitely feeling anxiety and uncertainty about Brian’s adult life, and need to hold strong to my faith.

My anxiety is is related to the so many unknown variables, complexities and transitions into the adult disabled world- where will Brian go after graduation? What will he be doing? Will he be happy? These concerns don’t actually surprise me, but the timing does. Major Milestones creep up like a thief in the night; we don’t think they do, especially with so much repetition and the mundane that are hallmarks of the special needs life for years , yet one day, a major transition finally arrives and we can still feel unremarkably unprepared and lost. Brian still has one more year to go until graduation, so fortunately we have some time to get ready for the next Great Adventure. Still, there will be huge losses to grieve as we navigate the unknown: the teachers, therapists, school program, and activities of many years will end . It will be sad to leave the familiar after so long and our kids in particular can struggle greatly with such a radical change…

I know it’s inevitable and that Brian and I will have quite a transition to go through when the time comes . There will be lots of tears, behaviors and frustrations. Brian will need extra time, understanding and grace to adapt to post-graduation life. I will also require the same grace and strength to help my son somehow make sense of his world that no longer exists. It will not be easy. It will take lots of extra patience, time and flexible expectations for both of us. This transition will truly be one day at time, even one hour at a time. I draw comfort in challenges that we have faced in the past and how we were able to work through them by God’s grace- He is always faithful, even when I don’t necessarily understand His timing or the end result, yet things always work out as they are meant to.

In the meantime, I am going to take a deep breath, put one foot in front of the other, take one moment at a time and give myself a lot grace during this difficult transition . Crying has been cathartic, as well as speaking with other Moms whose children already attend adult programs, along with sharing from my heart on this blog. I know brave parents who have walked this journey before me and I take great comfort from their experiences, strength and wisdom. I know there is a plan for Brian and I just need to trust in whatever that will ultimately be. I believe one day I will be able to look back at the tapestry of our lives and so much will make sense at that time, especially during those times in the valley. Transition to adulthood for our disabled children is hard and scary, but we are never alone…😘❤️🙏🏻

Until next time, thanks for reading!😊

This cold, grey Saturday matches my mood, which is mildly depressed and tired at the moment. It is partially self-inflicted due to a major sugar withdrawal from the copious amounts of holiday treats that I swore I wouldn’t eat this year, but inevitably did. Another reason is because Brian has been playing the Beatles, “Here Comes The Sun” and rewinding/replaying the same Mickey Mouse episodes incessantly since school has been closed! 😫

Most of the time, I can block these things out, but today, which is Day 9 Off, has been hard. School vacations in general are tough, especially for our disabled children who dislike having their routines disrupted. Limited activities and winter weather keep us all indoors, so parents/caregivers have to be creative and patient, as the hours slowly go by.. Camp Mom is running out of ideas to keep busy and off the iPad, as well as steam to keep going. It’s always been this way, but this year seems to be particularly difficult for some reason…

Fortunately, we got out of the house and went to a hotel for a few days this week to break up the vacation. I am grateful we did this- both for our sanity and for fun, which it was! Pool time, breakfast buffets, walking around local shopping malls and dining in restaurants was enjoyable, yet despite these things, there is an internal dissatisfaction that I can’t seem to shake right now and a mental weariness that threatens to steal my joy…

I’m sure part of the reason for my malaise is because the holiday season is almost over and 2024 is just 2 days away- it’s a combination of both a sugar withdrawal and the realization, once again, how quickly time is moving on.. I used to make New Year’s resolutions, but would inevitably break each one within a few weeks. I have decided not to do that anymore, as I don’t want to set myself up for failure and feel defeated. But, I do want to make 2024 a good year in meaningful, practical ways, regardless of what happens. Easy to do? No- it will be a daily decision on my part and sometimes I won’t feel like it. But is it possible ? Yes- when I make the choices to ensure I will attain the goal that I set. The first step is deciding what I really want, then choosing wisely and realistically.

I have given this a lot of thought over the past few days- if I could be granted just one gift to make 2024 a good year what would it be? There are certainly lots of gifts to choose from, especially of the material kind. But these gifts, while certainly helpful, are temporary/fleeting and not soul-sustaining. I know that I definitely want a gift that will keep me grounded in both good and bad times; a gift that keeps on giving, regardless of my life circumstances…for me, personally, this is the gift of peace.

The Bible refers to having the “peace that passes all understanding”- I love this! This means having internal peace, regardless of my daily situations. The world may be going crazy ( which it definitely seems to be some days!) and everything and everyone is out of my control, ( which is certainly true), but if I can still maintain peace in the midst of chaos, hardship, and uncertainty, that would be the greatest gift I could hope for in this life. In fact, I believe true peace of heart and mind begets other gifts, such as joy, patience, hope snd humor, which is one of my favorites .

I can’t control others or situations that happen without my doing- I can only control my reactions to them and these things. I also get to choose daily how I respond to the people and things in my life. It’s human nature to want to control things, we all do it, especially when it comes to our children since we need to advocate for them. But what happens when things are out of our control? When we have done everything possible and still not get the outcome we had hoped for? Or perhaps we are impatiently waiting for answers and the silence is making us anxious and unsettled? All of the aforementioned I have done many times and it got me absolutely nowhere. There is absolutely no peace in any of these things , and, yet, I keep doing the same thing over and over hoping for a different result, which is the definition of insanity. Why do I keep doing this?!

I think deeply ingrained habits are the main reason for why we do what we do. It‘s really hard to change – when I’m honest with myself about my own resistance, I am able to see Brian’s difficulties with more understanding and compassion. Fear is another reason- we like to have this false sense of control over every aspect of our lives to quell our anxieties, yet, we know deep down this is really an illusion if we are honest with ourselves…

It takes courage and honesty not to ignore what your gut or spirit has been telling you and to finally face the reality that true peace may be missing in your life. Perhaps you have reached a crossroad where you know you need to make a change and you are now ready to do something about it. The New Year is symbolic of new beginnings and hope…Although I know that my life will continue to have many challenging moments- the real question is what choices am I willing to make to ensure that I will receive the peace that I seek, despite what is happening?

I believe the first step in having the “peace that passes all understanding “‘is acknowledging that I am NOT the almighty authority on Brian and other people/things in my life that I think I am sometimes. I forget that there is a Higher Power greater than myself who is in charge. That is actually a huge relief, because I am not responsible for others and their choices. While I am responsible for advocating for Brian and taking care of his needs since he is unable to, I can choose to be at peace when I know I have done my best.

Secondly, peace will come if I am willing to believe it is possible. I have tried everything else at this point, so there is nothing more to lose and so much to gain instead. I simply have to show up, suit up and trust in the process and plan that is destined for me.

Thirdly, I have daily choices to make that can make my life peaceful- or not. I have the ability to think and change my actions/reactions whenever I want to. If something hasn’t been working for a long time, I have the freedom to change whatever I am doing to make things better, whether that is my attitude, my thinking, and for the peace in my heart and mind.

Fourthly, I must make an effort to HALT daily: am I Hungry, Angry, Lonely, or Tired? Special Needs parents in particular must HALT for the lifelong marathon with their children. If I don’t eat properly, express my anger appropriately, seek friendship with others and get enough sleep, I will definitely not have peace in my life: HALT is a prerequisite to peace or anything else that we desire.

Finally, there will be a price to pay for inner peace. It is a daily spiritual practice for the rest of one’s life that will require persistence and belief in the unseen at times. Seeking and desiring peace is similar to exercising a new muscle group for ultimate strength- it’s uncomfortable, even painful in the beginning, but the rewards are worth it: less stress, an enlightened perspective on life’s challenges, a stronger immune system and inner reserves of strength that you never knew you had…Yes, all of these things is really what I want in 2024! How about you?!

Thank you for following along today. Wishing you and your family the “peace that passes all understanding” in 2024 and beyond! Until next time..😘😘❤️❤️

Brian turns 20 years old next week, so I have been reflecting a lot lately on the past 2 decades of motherhood . One of the greatest joys and sorrows in my life has been raising our beloved son, Brian. Prior to becoming a Mom, I never thought that it was possible to feel such intense love and despair over a child. It didn’t occur to me that such a dichotomy could exist, but these past two decades have shown this has indeed been the case.

For every two steps of victory, there has been equal steps of setbacks, making this journey with Brian very interesting to say the least. The highs have been higher and the lows have certainly been lower. I have definitely evolved as a Mom and am not the same person as I was almost 20 years ago. I have aged, raged, cried, worried, danced, rejoiced, laughed and loved greatly as a mother. I have also made many mistakes, taken risks, (despite my fears), researched, advocated, hoped and prayed. I still do all these things and always will, as long as I am Brian’s Mom. It is my legacy as a special needs parent and I pray daily for the grace/strength to do what is best for my son.

In some ways, raising Brian has certainly become easier with time and in other ways the challenges remain and always will. The difference now is that I am older, and am not as energetic as I used to be. I have to work harder at being patient and keeping a sense of humor/perspective. Self care is now front and center, instead of being on the back burner like it was for many years. There is no way to live the special needs life without taking care of myself, otherwise Brian and I both suffer. So, there has been a slow shift of perspective and priorities over the past 20 years to finally reach the summit of where our family needs to be in order to be functional, moving forward, and content, at least most days. Putting our own oxygen masks first, then Brian’s, has definitely served all of us well.

There have been many times over the past 20 years when I wanted to run away from home because Brian’s challenges have been too overwhelming for me. I have felt powerless, heartbroken, out of control and still do sometimes…I have been amazed by my own ultimate resilience , but that strength comes from a Power greater than myself. It’s just not humanly possible to run life’s marathon, day after day, year after year, without God’s help. It is in His strength that I am strong and able to help Brian live his best life and for that, I am eternally grateful.

Despite the ups and downs of raising a disabled son, motherhood has provided many wonderful rewards over these past twenty years that I feel so fortunate to have experienced. Brian shares his love so freely with others, persists despite the odds again him, and is the most loving person I have ever known.. He has a purity of heart and spirit that is genuine and very typical of special needs children. There is an authenticity in the way he interacts with others that is heartwarming. Brian is sincere and kind- he will never know guile or malice. He loves and accepts others for who they are and likes when this is reciprocated.

I am a special educator by background, but the true Master Teacher in our home is Brian. He has taught Jim and I so many important lessons about love, strength, courage, patience and resilience over these past 2 decades, more than anyone we have ever known. Our lives are truly enriched because of our son. Brian has challenged us to step out of our comfort zone many times to join him on his journey. Because of Brian, we have met incredible special needs families, therapists, teachers, counselors and volunteers. We are better people because of our beloved son, despite all that is required of him and us.

I look forward to having conversations with Brian one day in Heaven. I believe he will have a lot to say at that time, for he is from a large, extended family of talkers! In the meantime, he has learned to communicate in other ways and has also grown in his receptive understanding over the years. He has achieved many milestones, step by step, and we couldn’t be more proud of him and what he has accomplished!

So, without further ado, to our Beautiful Boy:

Dear Brian,

It is hard for me to fathom that you will turn 20 years old next week- when and how exactly did this happen? I can’t believe you will no longer be a teenager; the days have sometimes been very long, but the years have truly flown by…

Thank you for being our gift, the wonderful son that Dad and I have been blessed to raise and love! You are our heart and soul, dear Brian, and have given our life such precious meaning. Your hugs and love are legendary, never-ending and life changing. You have inspired, persevered, and continued on your difficult journey, but you courageously show Dad and I how to live life fully, every day, with grace and strength, even when it’s very hard to do so. I admire you so very much- you are my hero and precious treasure.

I wish you on your 20th birthday all the joy and love that your heart can handle, which is a lot! May you always know just how much you are loved and wanted. May you continue to be a blessing to others as the Joy Ambassador, no matter who you meet or where life takes you. May you always learn and experience new things in life to the best of your ability. May God protect your health and heart from all harm and always hold you in the palm of His hand…

Thank you for choosing me to be your Mom! I love you to the moon and back, now and forever… Happy, Happy 20th Birthday, Son!

Xoxoxo….

Mom 😘😘😘😘😘❤️❤️❤️❤️❤️

If you had the opportunity to pick only one gift that would have a major and lasting impact on your life, what would it be? This is a tough question because there are actually multiple gifts to choose from. There are many things that would certainly make our lives a lot easier and more comfortable. Perhaps money is the first thing that comes to mind? It is true that having money is essential to live, particularly when you have a special needs child, as the lifetime expenses are exorbitant. Money or lack of it, can indeed have a significant effect on one’s quality of life. Or maybe the gift that you desire most is good health, another practical request that becomes more relevant with aging and the never-ending needs of our children. Most of us want to be healthy enough to care for our kids for a long time because they will always require assistance of one kind or another. We know that the quality of their lives directly depends upon the quality of ours.

Unfortunately, life is often filled with challenges that can change the financial and/or health status in an instant either for ourselves or for those we love. That was certainly the case for many of us when our disabled children were born and even to this day. Our kid’s medical and behavioral issues have likely rocked the foundation of our lives to the core, and their health may still be precarious. Even our own health has been effected from the stressors of life and the care taking of our special children over many years. As wonderful as the gifts of money and health are, we know in real life that their availability can change in an instant when circumstances occur beyond anyone’s control occur, so what then? What gift can transform our lives for the better, regardless of our personal circumstances?

I have found through trial and error that serenity is the one underrated, priceless gift that can be ours if we are ready to seek it. Serenity can make a difference in our mental perspective and how we make our decisions in life, despite our difficult circumstances. Serenity is a daily choice, a spiritual practice: it’s a conscious decision to let go of what we can’t control and be willing to be open to what our Higher Power or God, has in store for us. Letting go and letting God is actually a relief: it means that I’m not in charge and I can release the burden that I have carried for so long. Is it easy to relinquish control of situations that we can’t do anything about? Absolutely not! Let’s face it: we human beings are control freaks by nature. We live in a “take charge” world that admires and encourages control. Anything to the contrary is considered to be a sign of weakness. But nothing could be further from the truth.

In our special needs world, both the parents and children have much heavier burdens than most. We are required to take control of all aspects of our kids lives because they don’t have the ability to do so. Advocacy is a form of control that we often exhibit on behalf of our children, whether it’s with the medical, educational, or recreational communities. This type of control is necessary and generally leads to outcomes that help our children live their best lives. We may have learned as children how to have self control in order to get along in life with others. However, our life experiences with our kids have brought many of us to a point where we must accept that there is only so much we can control in our children’s lives, despite our best efforts. That is one of the most painful realities to accept, which is why I liked denial for a very long time.. At end of the day, we finally learn that we can only control ourselves- our reactions, perceptions, and choices – collectively, these things determine how we handle situations that are out of our control. All of us will face these situations, if we haven’t already. The question is: what are you going to do when you encounter such dilemmas?

I loved being in denial and minimizing the stress that raising Brian was having on me. Initially, it was just easier to ignore the cause and effect and for a long time, and living this way worked-until it didn’t. I can share from personal experience that eventually denial no longer was my scapegoat, and I started to feel the physical and stressful effects from trying to be in control all the time. My sleep was effected, my stomach was often in knots, and my head sometimes felt like it would explode. I could actually feel my blood pressure rise on certain occasions , and my chest sometimes felt tight. I was feeling out of control and fearful. I wasn’t initially aware of the connection between my physical reactions and trying to control everything, but eventually put the two together. I came to realize that living this way was not living at all. I wanted to get off the insane merry go round of trying to control people, places, and things that were not my responsibility. I wanted to change and knew I needed help.

Perhaps you have heard the serenity prayer: “God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference”. There is such power and peace in this prayer! I had been quite familiar with it from a long time ago, but it was reintroduced to me again in more recent years. My personal interpretation of this prayer is: I can’t change others, I can only change myself, but I need help in order to that – every moment of every day! As much as I would like to think that I am in charge of Brian’s life, as well as my own, the reality is, I am not, and I have my limitations. This revelation and admission was a physical relief! It’s a true freedom that one can experience. The result is true serenity, which is defined as “the state of being calm and peaceful”- yes, please!! I can’t , but God can, so I will let Him- regardless of the situation- the end!

Does this mean that I no longer feel anxious or out of control when difficult situations arise ? Of course not- I am human and will continue to react and have those feelings of fear and insecurity. The difference is now I know to ask my Higher Power to help me and direct my path- and He always does. It is a matter of faith and trust- I have nothing to lose and so much to gain, especially the gift of peace. I just have to be willing and open to what is possible, even if I don’t necessarily believe it. Having experienced the opposite for so long, I am grateful and relieved that the burdens in my life are truly not meant for me to carry alone and never have been…

May the peace that passes all understanding, especially in the midst of the difficult circumstances in our lives, always be yours. There is a Higher Power who cares deeply for you and wants to help…❤️❤️🙏🏻🙏🏻

Until next time, thanks for reading! 😊

It may seem that you will never recover from the heartbreak, fear, and anger that the diagnosis of a disability will bring. But, in time, you will learn to live with this new reality, as painful as it is. You are stronger than you think. You will rise!

You will become a voracious reader as you learn about your child’s challenges. You will also become a fierce advocate for your son or daughter, doing and creating outcomes that help him or her on their journey. You will even amaze yourself on what you have been able to accomplish, despite the many obstacles and setbacks. You will rise!

You will also learn that life is not always fair or kind to our disabled children. You will become frustrated at times by their lack of progress and/or the bureaucracy that we depend upon, as well as the situations or people beyond our control. Yet, despite all of these obstacles, you will rise!

Your heart will be broken into a million pieces when certain milestones that you hoped your child would achieve by now, after so many years of trying, ultimately don’t happen. This can be a bitter pill to swallow. We have to be honest about that, for it’s the only way forward towards acceptance of our children and our own limitations. This is a rough road for life, but…you will rise!

You will eventually learn compassion in ways you never knew were possible. You will be more cognizant and understanding of people with unique differences. You will also be lead to see the beauty of each special soul, all because of our own children who chose us. Their daily examples of persistence, acceptance and grace show us what is really important in this life, what is true, and what will remain standing in the end.

You will meet wonderful teachers, therapists, volunteers, and mentors, heroes we would have never known otherwise- all because of our kids. We will inspire these individuals as much as they inspire us. You will learn to celebrate each achievement and milestone, no matter how small. Some will become dear friends and others we will agree to disagree with. In the end, we will always need this team for support, encouragement and wisdom, no matter what.

You will always need the companionship and support of other special needs parents. This journey is too hard, lonely and isolating otherwise. You will inevitably find your tribe, which will be as unique and diverse as our kids are. Our children may have different diagnoses, challenges, and preferences, but the concerns and hopes of all special parents are generally universal. We will need a safe place to fall and bear our souls, to those who “get it”. You will laugh and share humor, as well as tears. Your tribe will help you to rise!

No matter where the special needs journey takes you and your child, and despite the struggles, heartaches, and frustrations that you will go through, there is a Higher Power who cares. God understands your heart and your situation deeply. He wants to share the burden with you. His grace is sufficient and his mercies are new each morning. He will never leave or forsake you. Like the sun that rises each morning with the dawn, He will help you to rise if you are willing..❤️❤️❤️

Recently, Down syndrome and autism awareness days have been highlighted via various forms of media and I think that is a very good thing. Most groups today, regardless of diagnosis or affiliation, have “awareness days” to remind and educate the public that our society is comprised of many unique individuals who should not be forgotten or marginalized. Yet, awareness is not enough: acceptance is also important, as well as mutual respect, for a better understanding of another’s perspective.

This doesn’t mean we have to agree with everything we see or hear, but the hope is that we can perhaps learn something new or become better informed without being dismissive of individuals we don’t understand. At the very least, “be polite and say nothing if you haven’t anything nice to say”, as my Mom used to tell me and my siblings when we were little kids. I never forgot that piece of advice and believe it’s even more relevant in our world today.

I didn’t know Down syndrome AND autism could coexist in an individual and never dreamed that my son would have these diagnoses. Awareness is one thing: we are most certainly aware on a daily basis of Brian’s dual diagnoses because of how both impact every aspect of his life. This awareness was immediate and quite frightening, actually, yet simultaneously a relief.

We finally understood why Brian presented with certain behaviors when they were explained to us by a neurodevelopmental pediatrician, (who happened to see patients specifically with Brian’s diagnoses.)There were therapies and interventions that could help Brian be his best self and that gave us great hope, but it doesn’t mean I actually “accepted” this outcome, though I didn’t realize it at the time…

In retrospect, I was actually grieving this additional layer of challenge that Brian had. I would not have called it grief at that time, but that’s exactly what it was. One could could also call it “intense denial”. I was extremely focused on “fixing” my son: how many private therapies could I schedule for him in a week or making sure he didn’t miss a moment of center-based early intervention, sound therapy, or hippotherapy? I would berate myself if Brian missed a session of anything and would get frustrated when I wasn’t seeing the progress I thought he should have been making. I was slowly becoming insane…

After many months of this insanity, I eventually became so depressed, that getting up out of bed to care for my son became a monumental task, let alone going outside anywhere. So for a time, the pendulum in our lives swung the other way and we didn’t leave the house that much. Brian was having severe sensory issues during this time and didn’t like going outside the comfort of home anyway, so we remained there. During that time, I finally grieved the loss of the dreams that I had had for Brian. I had to dream new dreams for him and it was so hard..

I finally allowed myself to feel my frustration, anger, and fatigue, emotions that I had to face in order to be able to move forward. It took time, self reflection, and tiny baby steps for me to heal..I came to eventually accept what I couldn’t change my son’s disabilities. BUT, I also learned during this very difficult time that life can still be worthwhile, even joyful, despite the hardships, especially for Brian. It was ultimately a matter of daily awareness and choices. Counseling was hugely instrumental in this shift of perspective, along with asking God, on my knees, to change me since I couldn’t the realities of my son’s disabilities. By the way, asking God to change me is a daily ongoing thing for the rest of my life..

I won’t deny that I am still unhappy/ frustrated at times about our special needs journey, for it is a difficult one, especially for our son..

Do I have days when I still can’t get out of bed to face the mundane routines with Brian that will always remain? You bet I do, especially as I get older.. Do I wish my son wasn’t so prompt-dependent for literally every activity throughout the day? Absolutely! Do I ever think about the day I am no longer able to help Brian, especially physically, because I am too old and unable to do so? I have thought about this since the day he was born! Do I think about how others will treat him when I am no longer here? Indeed I do and the very thought absolutely terrifies me..

I pray that Brian dies before me and I follow him the very next day, for no one will ever take care of our children exactly the way we do… These are the realities of what most special needs parents think about constantly and is our burden to bear daily. These things are not what we hoped for or certainly expected when we became parents. However, I am reminded when I see how Brian lives his life that grace and true acceptance of the things we cannot change is possible! Grace and acceptance ultimately begets joy and hope, despite difficult circumstances. My son’s life is a testimony to these truths.

Brian lives his life in the moment, literally, with complete trust and confidence that all of his needs will be met. He derives great joy from Mickey Mouse Clubhouse episodes, Cheeze it crackers, warm showers, and Beatles music. He is a kind soul who doesn’t understand hate or jealousy. Brian will never be mean to another person, or care about acquiring status or wealth. Brian is a genuine, stubborn, sensory-seeking, pool-loving, routine-oriented, and loving young man, who loves others just as they are, no matter who they are.

According to the world’s standards, Brian would be considered severely disabled, unfortunate, and not worth an investment of time and love. Thank goodness we know better- and when you know better, you do better! Our kids are so much more than their diagnoses, if we are willing to learn from them, as much as they learn from us. We see how they can grow and thrive when given the opportunities/resources and most importantly, the love and support that they receive does make a huge difference in their overall development. It’s important to remember that all of the above will happen in our child’s own time, not ours…

I believe many unhappy people would give all of their money or possessions in exchange for the genuine appreciation/contentment that our kids have for simple pleasures and the agape love they naturally possess. There is something to be said about living life authentically and from the heart, things that our children do so well. Brian has been my greatest teacher in this regard, so when I do find myself in those discontented, whimsical moments, I remind myself that I am still human, then focus again on what is ultimately most important…

Recently, Brian has demonstrated more interest and motivation to use his speech app on his iPad, providing us with consistent insight as to what he is thinking. We now have this speech app on our iPhones, making communication even more mobile and convenient for our son. Technology has opened so many doors for our special children, with endless possibilities and hope for what can be…

Today I am reminded once again of how far Brian and I have come from those early, awful and overwhelming times.. There are still many difficult days, but simultaneously there are also things to be joyful over and hopeful about and thank goodness I am now able to see this..I am very much aware that Brian will struggle with the consequences of Down syndrome and autism for the rest of his life. I have finally accepted this reality by facing and going through my grief. Accepting life on its terms allows me to focus on what is most important ( peace/ contentment) and to appreciate every gift that comes our way, no matter how small, (at least most of the time.) I have Brian to thank for that and am privileged to share this journey with him. He is my hero and inspiration to live an authentic life,just like he does, with amazing grace.. I love you, my Beautiful Boy, and am so glad you picked me to be your Mom! 😘😘❤️❤️

J

Until next time, thanks for reading! 😊

I have recently been reflecting on Brian’s journey that began almost 20 years ago and have been reminded that for as many steps of progress he has made, so much has remained exactly the same… If you asked me when Brian was first born what I thought his life would look like 20 years later, the answer then and the reality today are two completely different things. Keep in mind, we had no idea that a dual diagnosis of Down syndrome and autism even existed, let alone Brian actually being diagnosed with both at 2 years old. I believe there are reasons why we are not supposed to know what the future holds and even more reasons why it’s so important to have faith in a Higher Power, who I call God, when life throws you unexpected curve balls.

This journey with our special children will be filled with The Good, The Great, The Bad, and The Ugly, sometimes all in one day! Our rollercoaster experiences with Brian over the years repeatedly teach me to hang on for dear life to God for His grace and strength, especially in those dark places when times have been overwhelming and scary. I have literally been on my knees at times praying for courage and wisdom to help our son. Sometimes things work out the way I hoped: other times the answer is “no” or “not yet”. Yet, when I look back at all that has happened in Brian’s life and in ours, we have truly never walked alone and ultimately things have worked out as they were intended, even if we didn’t understand or agree with the outcome at the time. God has had an incredible track record of being extremely faithful to our family throughout all the seasons of our lives. I need to remind myself of this fact, especially in the midst of difficulties, that “ He will work all things together for good” because that continues to be the case.

Despite my faith, I am still scared of the day when I can no longer take care of Brian because of my own physical limitations. The daily struggle that all of us lead with our special children is real, along with the emotions that accompany each challenging episode, day after day, year after year….Sometimes, the good and the blessings don’t feel like enough. The sadness and depression are also real, as well as the disappointments and dashed dreams. So is the exhaustion and fatigue of physical, mental, and emotional caretaking of our children, especially as time goes on. Brian will never be able to take his own shower without assistance or manage any activities of daily living or self care on his own. I certainly wish he could, but that is not going to change, though there will always be ongoing progress. The thought of assisting Brian with these needs until I am no longer able to often overwhelms me, yet relinquishing this role to someone else is just as difficult.

These truths have been weighing especially heavy on my heart this week. I think they are always there, just below the surface, but I’m reminded of the “ downside” of raising Brian, especially when I’m sleep deprived. Lately, I have been struggling with getting enough sleep, a common problem for millions of parents. I find it has become more of a challenge as I get older, so I am trying to find ways to improve the duration and quality of my sleep. When I don’t get enough of it, the world becomes a dark and exhausting place and caring for Brian becomes a huge challenge.

A friend had shared with me a while ago the acronym “HALT”- are you Hungry, Angry, Lonely, or Tired? That is an excellent question- sometimes I’m all 4 things at one time! Even experiencing one of the four can determine how the day is going to play out if I’m not aware of what I’m feeling and then doing something about it. We special parents particularly have a tendency to put our own needs on the back burner when caring for our kids, but if we ignore HALT, it can ultimately be at our own peril.. It is not an option, but an imperative that we eat healthy meals, acknowledge our anger when we feel it, (so we are able to move forward), reach out to a family member or friend when we feel lonely and finally take naps and get to bed earlier when we are tired.

For years, I felt guilty about doing such things, as I thought it would be taking away time from Brian. However, becoming burned out, exhausted, and irritable were red flags that what I was doing was clearly not working and I needed to do something different. I am a work in progress, but I am choosing to change those things in my life that I can, one day at a time, like the aforementioned, knowing that both Brian and I will be the better for it. Plus, I’ll accomplish what I set out to do with a positive attitude and more patience when I’ve eaten and rested properly. These are things I can change, but there are certain things that I will always be powerless over. I have a choice to make: try to control uncontrollable situations/ people or surrender and accept them. I am learning that true surrender and acceptance of one’s daily hardships doesn’t mean defeat, rather, it is the beginning of true peace and the ability to live each day in freedom, despite how we may feel in a given moment. Feelings are not facts and are often fleeting, but they are not the end game, thank goodness! Our emotions are reminders that we are human and signal that something is right or wrong and that we have choices to make.

12 Step programs like Al-Anon, provide a wonderful road map to follow for those effected by someone else’s behavior. While originally intended for family and friends of alcoholics, I believe the first 3 steps of Al-Anon can also be applied to parents/caregivers of special needs children:

Step 1 – I admitted I was powerless over Brian and our lives have become unmanageable.

When I substitute “Brian” for “alcohol”, I see the truth of this step. I can’t control the fact that Brian is disabled and how his disabilities effect his life in multiple ways. Our lives have most certainly been unmanageable at times as a result. I wish I could eradicate his diagnoses with a magic wand when I see the struggles, experience the setbacks, and think of his future. It can all be very frightening. I may not be able to control these challenges, but what I CAN control is MY reaction to them, as well as my actions. When I make the choices that will benefit Brian to the best of my ability, our lives become much more manageable.

Step 2- Came to believe that a Power greater than ourselves can restore us to sanity.

There is no doubt in my mind that there is a Higher Power at work in our lives. Sometimes, God chooses to work behind the scenes, through the love and support of others, or through the resources that He provides. Over and over again I have seen such goodness and miracles in Brian’s life that have increased my faith and have given me hope, gifts that I hold on tightly to especially when difficult times or a crisis hits. This is my sanity, my hope, that enables me to get out of bed each morning and face another day, otherwise it would be too hard..

Step 3 – Make a decision to turn our will and our lives over to the care of God as we understood Him.

Step 1 is: “ I can’t”, Step 2 is: “He Can” and Step 3 is: “I will let Him” The acknowledgment of our human limitations is very freeing. That doesn’t mean that we don’t do anything, in fact, we special parents are some of the strongest advocates on the planet. Our children depend on us to act on their behalf, every day, in multiple ways. It is a huge responsibility and some of the most exhausting work that I have ever known. Advocating and taking care of our children is intense, relentless, and often tries our patience. It is not at all for the faint hearted, but we don’t have to journey alone…All that is required is a willingness to allow our Higher Power to guide us, give us strength and grace- no matter what marathon we are running – and He will!

Until next time, thanks for reading! 😊

As I’ve gotten older, I have become wiser and more aware of what’s really important in life…I don’t get so caught up anymore in the things that may appear so important in the moment, but realistically will not be a year from now. At the end of the day, these things are just not worth it and are a waste of energy. I have also become more cognizant of how precious a commodity time is and to use it wisely. I have often wished certain moments in time could stand still, especially those instances where the people, places and things that mean a lot to me were involved.

Unfortunately, times moves on for us all, we can’t go back, no matter how much we wish we could, especially to those more care-free days of our youth. I do miss those times, though, and will reflect on them sometimes still, particularly if I’m in the midst of a hardship or in a mundane moment. I find this to be especially true in those challenging moments with Brian. We know the mundane and repetition in our lives as a result of our kid’s disabilities is for a lifetime. The physical and mental strength that is required is the same. I get overwhelmed sometimes by these realities. Whatever little free time I do have must be used wisely for my well being and longevity in this marathon with my son. This is not an option. And I have choices to make..

I get to choose what, where, and with whom I am spending my free time with. Sometimes, I like time to myself in order to regroup and reset. Regardless of how I spend my time, I want to make sure that I feel comfortable, edified, and at peace. Anything to the contrary tells me that something is wrong and I need to make a different choice. Creating and maintaining boundaries is a part of this process and is essential to one’s well being and self respect. In the past, I struggled with putting boundaries into place with myself and others because of how it was going to be perceived. Hard learned lessons and acknowledgment of my own needs, but not at the expense of others, eventually changed my perspective and actions. I am grateful to be in a much better place today and make better decisions for myself as a result, at least most of the time…

There are many distractions in the world that may threaten to steal your precious time or guilty voices that may say you “shouldn’t”’do something or don’t really deserve to- especially because our special children need so much and can take up all of our time- don’t listen to this internal dialogue! One day you will run out of time and may experience the regret for not spending it well, which is the biggest tragedy of all…

So, make the time and take the cat nap, read a book, grab coffee with a friend, get your nails done, make vacation plans, take that class, realize the dream you’ve been postponing for years, pick up that instrument, use your voice, take that extra long bath or shower, and my absolute favorite: doing nothing at all, which is actually doing something. Whatever floats your boat or rocks your world, it’s time to do it and time you will never get back, so make every second count!

It’s now time to wrap this blog up- wishing you precious moments of time well spent for yourself and with the ones you love. Until next time, thanks for reading along! 😊

Here we are in 2023, a New Year, with a clean slate, and perhaps with the hopes of finally fulfilling those resolutions that we’ve been meaning to do…It’s an annual exercise that many of us go through, often prompted by overindulging on holiday foods or because of unfinished projects or regrets. It was no different for me at the end of 2022: I took mental note of what I would like to improve upon and what I wanted to eliminate in 2023, just like I have done for the past several years. It finally dawned on me this year, however, that expecting myself to maintain New Year’s resolutions has always been an exercise in futility and that I am setting myself up again for the inevitable failure when I stop doing them in just a few weeks. What is the point? Why do I keep doing this to myself?

Don’t get me wrong: I would love to have that kind of discipline and admire those who can stick to realizing their resolutions. There is a certain amount of satisfaction and a sense of achievement when you can reach the “summit of success” no matter what the goal is. I have seen people do that and admire them greatly for it. Sometimes, certain situations call for that type of determination: it’s those difficult circumstances where the choice is either to hang in there and resolve to get through ABC or roll up into a ball and remain in a fetal position until things blow over- I have done both, sometimes simultaneously, and I’m sure you have too. Making resolutions to hang tough and be strong through life’s many ups and downs is actually a good thing, but I believe there is an exemption clause that states you are allowed to be human and to have those days when the only thing you can resolve to do is to get through one moment at a time, even if it means doing absolutely nothing.

We live in a world today that worships achievement, and success, especially of the financial variety. Some people do resolve to make lots of money and see this as their main goal in life. We may also resolve to look better, feel better, etc and spend lots of time and money to only feel empty inside whether we have met the resolution bar that we have set for ourselves or not. It’s difficult when advertising and social media bombard our senses of what a perfect person and life looks like. We may not always be conscious of the messages we are receiving, but they are always there, even subliminally, whispering into our subconscious that our lives would be better, we would be happier if we just resolved to abstain from desserts, exercise daily, etc. There is nothing wrong with doing any of these things or setting such goals, in fact, achieving good health, for example, is definitely a goal worth striving for and maintaining. But there is much more to life than the physical- how do we resolve to take care of the emotional and spiritual parts of our being? They are directly linked to our physical well being and if we ignore our feelings and spirit, our bodies are negatively impacted. Stress and inflammation in the body can set the stage for illnesses, with its roots often related to emotional and spiritual emptiness.

I have a history of being too hard on myself and setting unrealistic expectations, which leads to perfectionistic tendencies that are fruitless and exhausting. It stems from low self esteem, but I am proud to say that I am finally learning wisdom from my collective life experiences. What a waste of time and energy it is being a perfectionist: I no longer want to make New Year’s resolutions that I know I won’t keep, could never keep, and quite frankly have left me still feeling slightly dissatisfied, even when I’ve come close to the apex of Resolution Nirvana. It’s just not worth it. Yet, if I take away the goal of keeping my resolutions, I need to replace it with something(s) attainable instead so that I don’t feel that I’m missing out on something. After all, our lives must have meaning in order to be fulfilled…I think that I was just overthinking the solution or looking in all the wrong places. The solution is actually quite simple and everyone has the ability to choose it if they so desire..

So here it is: I resolve not to make (nor commit to ) unrealistic ( and at the end of the day unfulfilling), meaningless resolutions ever again. Instead, I promise that I will allow myself to be human on a daily basis, which includes the certainty of making mistakes and falling short of expectations, especially my own. I will give myself permission to take ownership of my life, to change my mind if I want to, and to be gentle with myself, especially on difficult days. I resolve to learn from my life experiences and put into practice the valuable lessons that I have learned as I see fit. I also resolve to live in the present moment as best as I can, for there are often miracles all around me, if I would just take the time to notice them…Such a choice enables me not to think about yesterday, which is past, or the future, which I have no control over anyway, (though sometimes I really wish I did, lol. ) And if some days are just too overwhelming to deal with, (and there definitely will be), I resolve to take extra good care of myself in order to get through them…Easy does it…One day at a time..

I also resolve to find humor, to have an open mind to whatever each day brings, and take the wisdom that I like and leave the rest. Additionally, I resolve to trust God for His daily provisions and plan for my life, even when I don’t like what I see and especially when I don’t understand. Finally, I resolve to do self care when possible and to do the best I can with what I have in a given moment in time. All of these resolutions are flexible, and attainable, without timelines or judgment, only the kind that I would impose upon myself. I believe that a content and happy life is possible most of the time when we resolve to do those things that speak specifically to our own heart’s desires…What resolutions do you want to finally realize for yourself today and always?

Wishing you and yours a Blessed 2023 – may your resolve, whatever you decide to do, bring great abundance into all areas of your life now and always… Until next time, thanks for reading. 😊

J