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! 😘😘❤️❤️
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!
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. 😊
Being a parent to a wonderful son has been one of the greatest joys in my life, but motherhood has also included personal regrets that I wish I could change. I’m guessing that’s true of most Moms and Dads. We think we know what parenting is going to be like based on the many examples we have seen over the years of other parents. We made a mental note of what or what not to do when we had kids of our own. We may believe that we had all bases covered prior to our child’s arrival into the world. But the fantasy versus the reality are often very different. Raising Brian is the hardest thing I have ever done. Sometimes, I wondered if I was really cut out for being a Mom. I had doubts in myself, in him, and how life was going to be. Fear and doubt were dominant forces, especially early on, but they are still there, just waiting to reappear in those difficult moments…
Reality tells me that my parenting has been successful, but for those of us who struggle with perfectionism, this truth can be hard to believe. Worrying about things that I couldn’t ( and still can’t) control in Brian’s life is probably one of my biggest regrets. I have gotten much better, but it took a very long time to relax and finally come to an acceptance that this is a trigger point for me, but, this anxious feeling WILL pass. I have years of evidence to prove this truth when I’m honest with myself about it. We humans like to control the outcomes of our lives on our own timeline, but of course life doesn’t work this way. Anxiety can be quite crippling and prevent us from enjoying the present moment- I had experienced enough of that and was desperate enough to choose something different, something better…Much to my pleasant surprise, life was not all a tragedy: there was enough good with Brian despite all the hardships of the special needs journey. Slowly, but surely, my perspective on motherhood and ultimately my life changed for the better- but it took work and time for the results to be apparent.
Another parenting regret I have has been comparing Brian to other children. I know we are not supposed to do that, for each of our kids has unique challenges and strengths. While this is certainly true, most parents will still take note of similarities and differences anyway. This was especially true in the early years when Brian was in early intervention. Comparison provided a frame of reference for me when so much was unknown about the extent of his disabilities, so in this way, it was actually helpful. However, as more issues came to light, comparing became extremely painful. I didn’t want to compare Brian’s progress ( or lack of it) to anyone else, but honestly it was hard to avoid when it was pointed out to you by well meaning professionals or in the sympathetic comments or glances from other parents. I felt very sad for a long time during these moments, trying to be positive, but the sting of disappointment and grief would get in the way.
As a result of my personal pain in those early years, especially immediately following the autism diagnosis, I went down a rabbit hole for a long while and isolated there. I didn’t have to feel in the rabbit hole, just survive, and that’s exactly what I did. I went through the motions and made sure to be physically present for all that Brian needed, including his doctor and therapy appointments, but emotionally/mentally, I was very far away. Keep in mind social media was just evolving around this time, but I was not a participant yet. There was a parent support group that I attended, but I felt like an outsider looking in and felt I didn’t have too much in common with the other participants. I wish I hadn’t isolated for so long, as I missed out on opportunities to engage with others and learn from their experiences and strength.
My independent spirit and stubbornness resulted in not asking for help for a very long time when I should have. I still struggle with this today, but I am now much more willing to vocalize my need for support. I believe the main reason for trying to do everything on my own was to avoid any discussion about the pain and sadness I was feeling on many days when I felt overwhelmed by Brian’s care. I realize now that there are blessings I could have had as a result of taking a risk in being vulnerable, but for a long time I just wasn’t ready..
I also regret not making more time for self care. I believed at one time that taking any time away from Brian would be detrimental to his well being. I didn’t want him to miss a moment of anything that would better his development. This unbalanced attitude eventually made me very depressed and of course nothing could have been further from the truth. The reality is when we take care of ourselves, we are better, happier parents. It can take a lot effort, planning, and creativity in order to make self care happen in a life where our kids need so much from us. It is often easier to dismiss our own needs or make excuses for them. But the consequences can be quite dire both for ourselves and our kids if we don’t make a deliberate effort to to do good things for ourselves. I now look at self care as an investment in myself that pays back dividends with compound interest. It’s the best thing I have done for myself since becoming a parent and it’s never to late to start!
Relaxation is an important part of self care that I also neglected for a long time. We are often so caught up in constantly advocating for our kids, planning their meals and their lives, that it’s really hard to decompress and detach from all of the special needs madness. The reality is: special needs parenting is a huge undertaking that is lifelong, so we better find ways of relaxing, lest we collapse! This may mean napping, reading for pleasure, or meeting with a friend and discussing something else besides disabilities. It takes time and practice to establish new and healthy habits but the effort is both worth it and necessary.
For every regret I have had, there are also truths that have evolved, slowly, over time..I am a worrier by nature, but looking at the track record of Brian’s victories in the most trying of circumstances reminds me of the good that can come out of adversity. I am stronger than I think I am. I will rise up again when I fall down. I can, even when I think I can’t. It’s not good to compare myself or Brian to other parents or children, but I can certainly learn a lot from both. I know when I need to be alone, but I also realize the importance of being in relationship with others and the blessings that brings. Today I am learning to ask for help when I need it and am getting much better at doing so. I now recognize allowing others to help gives them the opportunity to express their gifts and love. Finally, I promised myself that I will take better care of my own needs, relax more, and laugh lots, seeking such opportunities whenever possible. Life is too darn short to live with further regrets. I think Brian would agree! 😊
Brian’s school had their first “Back To School Night” yesterday in 3 years! It was surreal to be back in the building last night post- Covid and also a relief to know that we are back to normal, interacting (in person!) once again with staff members and other parents. In a certain way, it was like the pandemic never happened once we were all together again. The normalcy that we craved had finally arrived and it felt so good, along with the hugs and handshakes that had been put on hold for so long…
Last night was a cause for a celebration of many things both great and small. Many School improvements, along with staff promotions, were highlighted and the opportunity to learn about upcoming opportunities for the students was very exciting. I was able to speak with Brian’s teacher and staff for an extended period of time and learned that he is doing more things at school than I realized. He is maturing and more willing to learn and try new things than before. I am so happy that Brian is currently thriving in his school program! Knowing that your child is making progress, albeit slowly, and most importantly is happy, is like winning first prize! Brian’s school experiences have not always been so positive, in fact, some of them were excruciatingly painful! We had a horrific experience in a previous program that ultimately led us to Brian’s current school, New Beginnings, over 7 years ago.
I will never forget that freezing morning in February 2015. I had just gotten out of the shower when my cell phone rang with an incoming call from Trenton, NJ . I immediately thought of state government, then just a coincidence of a wrong number. Since I didn’t recognize the number, I almost didn’t answer, but decided to do so at the last second. Little did I know what I was about to hear on the other end. A gentleman introduced himself and said that he was with the NJ state department of institutional abuse. He mentioned Brian’s name, his school that he attended at that time, and the reason for his call. Apparently a staff member from Brian’s school had called the state to say that Brian and another non-verbal student in his class were allegedly verbally and physically abused at school, but he was OK. I don’t remember very much after hearing those words. I do remember running out the door with wet, uncombed hair and driving to Brian’s school like a maniac, calling my husband, Jim, enroute to meet me there. I had a pounding headache and felt like my heart was going to explode through my chest. I kept thinking to myself how could this happen to my boy?!
Brian was waiting in the front office with a staff member, along with the state investigator. I grabbed my son and wouldn’t let him go-he appeared to be OK. I checked Brian from head to toe: there was no evidence of physical abuse and he seemed like himself. Where was his teacher and the principal? In the meantime, the state investigator privately interviewed Jim and I, along with each one of the staff members in the classroom, and even Brian, who repeatedly told the investigator on his communication device that he wanted juice and a cereal bar, along with Christmas music.
The state investigator’s conclusions revealed that the alleged abuse did not happen, but something DID happen and we were not getting any straight answers… The principal eventually appeared and said that Brian’s teacher was being placed on administrative duty and a staff member involved was being terminated. Still no specific details for Jim and I. Of course this was a done deal once I received that initial phone call from the state investigator- Brian was not going back to that school. The next day we learned what actually happened: a staff member in Brian’s class had called the state to report the classroom teacher because she didn’t like her and they had had a history of disputes/disagreements. She wanted to get the teacher fired- what she didn’t think through was how her actions would effect 2 innocent children who could never defend themselves. We were sickened by the whole mess, and especially disappointed by the reaction of the school administration who did not advocate for Brian or even attempt to redeem the situation. I called Brian’s case manager on the way home: we were done and Brian needed a new program effective immediately.
After looking at 4 private autism programs in just a few weeks, we determined that Brian’s current program, New Beginnings, was the best fit for him. However, I was scared: after what Brian went through at the other school ( I was not impressed with his last teacher anyway, even before the debacle with the state happened), I wasn’t sure if this new school was actually going to work. Brian was starting a new program in the middle of a school year, after being at the previous school for 6 years. Transitions are definitely not Brian’s strong suit, and as predicted, the initial transfer to New Beginnings was extremely difficult. There was lots of resistance, sitting or lying down on the floor at school. Protests of every kind and bathroom accidents. Plus there was a bussing issue that we were blindsided by at the initial IEP meeting by the new transportation company who did not want Brian on their bus because he was too behavioral. It made perfect sense to me: my son’s educational world had literally just been turned upside down. Everything was unfamiliar and scary to him. I felt heartbroken for Brian and doubted my decision for his placement. Deep down I knew that ultimately everything would be OK, it was just going to take time and a very willing and patient staff to understand and support Brian. Like a Doubting Thomas, I needed evidence to see that I made the right decision.
Slowly, but ever surely, Brian started to adjust to his program at New Beginnings. From the very beginning, communication from the school staff was immediate, frequent, and transparent- how refreshing! This was definitely something I was not used to, in fact, I initially doubted it’s validity and needed time as well to trust in school staff once again. In time, this is exactly what happened. Brian’s confidence and comfort level grew and mine did too. There was always a willingness on the part of the school staff to listen to my concerns and to implement suggestions in order to help Brian learn. I can’t say enough how important that is: a school program is only as successful as the willingness of both parents and school staff to work together. Both parties have to also be flexible, creative, and perhaps above all, maintain a sense of humor, for educating special needs students is definitely not for the faint hearted! Conversely, raising a disabled child is very difficult and requires the same understanding, support, and love that our kids require. Our special children will thrive when the village comes together on their behalf!
It was so heartwarming last night to hear about Brian’s successes from his teacher, assistants, therapists, and other staff members. He has come a long way from those early days at New Beginnings of dropping to the floor and refusing to get up. Brian is more willing to learn and continues to make progress in his own time. He is affectionately known as “The Mayor” around New Beginnings, as he loves to greet each staff member and student alike. Like all of our children, Brian has gifts to share at school that leave a lasting impression on those who know and work with him. One staff member shared that he loves being in education specifically because of Brian…❤️❤️ I felt so overwhelmed by how others lives have been impacted for the good by our beloved “Joy Ambassador”, the title that I officially bestowed upon Brian a few years ago. It reminds me that we may not always remember what someone says to us, but we will always remember how they made us feel- how very true this is of our children and those who work with them..❤️❤️❤️❤️
On my way out of the school building last night, Brian’s teacher drew my attention to a picture of Brian that is on the wall in the main office area. He is in the school Bistro about to purchase a snack with his debit card, using his iPad mini to communicate to one of the staff what he wants. It took lots of steps, practice, and a collective effort for this captured moment in time. I am very proud of this achievement that my son worked so hard for. To some, this may be a small or insignificant thing, but to Brian, and to those who know and love him, it is a major milestone and a testimony to what love, patience, and persistent teaching can do. Thank you, New Beginnings, for being Brian’s second home of learning and love. We are so glad that you are at the helm of Team Brian and look forward to even more progress this year! 😊❤️👍🏻 I know Brian would say “thank you “ if he could, but I believe his actions speak louder than any words he could say…❤️❤️❤️❤️
Brian will complete 19 times around the sun in a few days and I’m still trying to wrap my head around it…Where have the years gone? As much as time seems to stand still, (especially in those challenging moments of raising a disabled son) it has truly flown by! There have been lots of wonderful moments, memories, and joy over the past 19 years, as well as heartbreaks, heartaches, and disappointments. As a result, I have mixed emotions regarding Brian’s birthday: it’s a wonderful milestone, especially of how far he has come along, but his birthday is also an annual reminder of just how much has remained exactly the same and always will, despite the progress. It’s bittersweet for sure…
To Brian, his birthday is just another day: gifts are irrelevant, but cake and ice cream are new favorites this year. He loves his life and his activities /routines which are the best gifts as far as Brian is concerned, on his birthday or during an ordinary day. That is what is most important and for which I am extremely grateful…But I still have birthday wishes for my Joy Ambassador. It is important to have dreams for our children no matter who they are or how old they are. At the end of the day, parents just want their children to experience life to the full and for them to know how much they are loved. Isn’t that true for all of us? My husband and I try our best to expose Brian to different experiences and demonstrate our love. Brian is generally a happy and a very loving young man, so it appears we have been successful in our endeavors, at least most of the time. Here are the birthday wishes for my Beautiful Boy:
Dearest Brian,
Here are my birthday wishes for you:
1. Son, may you always know how much you are loved- which is to the moon and back!! 😘😘😘😘😘😘❤️❤️❤️❤️❤️❤️
2. May you be blessed with good health- Brian, you have had your share of medical challenges over the years and have faced each one with great resilience and courage! Dad and I pray that you always remain strong, no matter what comes your way…💪🏻 💪🏻
3. May you be open to new experiences- I know this is not easy and takes time, but you benefit in so ways from new opportunities…
4. May your lonely moments be very few- No one likes to be alone and I know that you especially love to be in the company of others!
5. May you remain joyful! Brian Michael, you have been blessed with a sweet nature and a happy heart, which is your hallmark and gift to the world . This has been true since your arrival, despite the challenges of Down syndrome and autism. Sometimes your disabilities threaten to take away these beautiful qualities. It is not easy and you have a lot on your daily plate, but ultimately you prevail!
6. May you continue to bless those who are put in your path- Everyone who knows you speaks of your beautiful smile, big hugs, and loving personality. You appreciate many things that most of us take for granted. Dad and I look at life through a more appreciative lens because of you..
7. May you continue to learn and progress to the best of your ability- We wish progress, not perfection, in all that you do. It doesn’t matter what it is, or how long it takes, as long as “it” makes you happy and enhances your quality of life. We will do everything to support you. You are amazing! ❤️😊👍🏻
8. May you always have a “voice” to communicate what you need, how you feel, and what is important. This is tricky, and while augmentative communication is helpful, we don’t always know exactly what is on your mind. It is our wish that with time and practice, we can empower you more with the necessary words, for your “voice” matters!
9. May you always know how much Dad and I love you, no matter where life takes you or what happens..Brian, you have forever changed us for the good and are etched deeply in our hearts, our bond is complete and unbreakable! ❤️❤️❤️
10. Dearest Brian, may you continue to be in the palm of God’s hand, exactly where you need to be! He created you and sent you to us from Heaven. It’s hard to believe, but God loves you more than we do and knows His plans for your life. I know you trust Him for all of those details by your pure heart and trusting nature, even when Dad and I waver in our faith. Sometimes, we do find it difficult to believe in the midst of your trials, but your courage and perseverance tells us to do otherwise. We will continue to ask for God’s wisdom/ guidance, follow your lead, and take huge leaps of faith with you into the future, while living and loving with you in the present. I believe this is the best birthday gift we could give you.❤️❤️❤️❤️
Have you ever thought about what your purpose in life is? One example may be the acquisition of material wealth , though these things can certainly be a by product when one fulfills their life purpose. Some people believe their sole purpose in life is to make lots of money, sometimes at the expense of their relationships/ families. It can be very tempting/ alluring, but is it really worth it in the end? As the saying goes “ you can’t take it with you”. I doubt most of us will be thinking about our bank accounts on our deathbeds. Instead, we will be reflecting upon family, friends, and others who added love and meaning to our lives, as well as our own contributions during our brief time here on earth.
There is a distinct difference between the material and the soulful: one is temporary and the other is eternal. Material things are satisfying for a season, but will never quench the desires of your spirit. Of course we all enjoy the trappings that money can buy and those things in themselves are not the problem. The issue becomes when material things become our priority at the expense of our relationships. We have all seen the disastrous effects of what happens when bad choices are made in this regard. No one really wants that to be their life story or ending. It’s just not worth it and it simply won’t matter in the end.
I have always been fascinated by Brian’s lack of interest in any material things. Christmas and birthday presents, for example, mean absolutely nothing to him. He has recently showed some interest in unwrapping gifts this past Christmas, but his attention to the actual gifts themselves were fleeting. For a long time, I felt very sad that the toys we thoughtfully purchased meant absolutely nothing to our son: it was just another reminder of autism stealing something else that was a basic pleasure to most. I had to remind myself that this was not about what I wanted for Brian, but what he wants for himself. As his Mom, my job is to provide Brian with opportunities and exposure to as many things in life as I can, but ultimately I must respect his choices, as hard as that can be at times. It took a very long time for me to learn and accept this fact.
When I learned to become more of a student of Brian, rather than his teacher, I began to discover my true purpose in this life. Don’t get me wrong- teaching our children is very important and fundamental to their development, but sometimes we can get so caught up in the weeds of accomplishments/ expectations for our kids that our priorities can get out of order- how important is XYZ? Will ABC really matter 5, 10 or 20 years from now? How about what they really want? What will ultimately make our children happy? How can we go about helping our children live their best lives on their terms, without losing ourselves in the process? These questions were the segue that lead me to becoming a student of Brian. After a long time of sheer exhaustion and often frustration, I was finally confronted by a thought on one particularly difficult day: do I want to just survive this special needs life or actually thrive in it, despite the inevitable obstacles ? Do I believe this is even remotely possibly? Yes, I desperately wanted to believe, since I was near the end of my proverbial rope. I figured I had nothing to lose at that point and potentially something to gain, so I was more than willing to try- anything!
I will admit that being a student of Brian is a tricky business: he has severe learning disabilities and is nonverbal. It has taken countless hours of observation to understand certain behaviors and learn what Brian is thinking. Augmentative communication has certainly bridged the gap of the unknown, for which I’m extremely grateful. At least I have some insights as to what Brian’s thoughts and preferences are and I do believe there is even more from him to learn and always will be. It’s just very slow to surface, often requiring a great deal of patience and a belief that things will unfold in their own time. I have also learned through my mistakes and experience as Brian’s Mom. Ultimately, what Brian really wants is what all of us want: to love and be loved. It’s that simple! My job, I discovered, is to provide those opportunities that will realize those desires of Brian’s heart. By the grace of God, I try to do so, one day at a time…My hope is that I can continue in this mission until my last breath.
My life’s purpose doesn’t mean that I lose myself or what is important to me in the process. When you are a student of your special child, with an important mission to accomplish, you ultimately learn to create a balanced life for yourself out of necessity. The long haul requires it. Brian will not benefit if I don’t take care of myself, so I make sure now to take breaks, big and small. I read for pleasure, write, and exercise. I try to eat well, and more recently, take quick cat naps. It’s the best acts of self love that I can do, which in turn, allows me to love others and engage in meaningful relationships. I am so grateful for these gifts. My cup no longer runs empty when I make a daily decision to do these things. It’s that simple. If I choose not to, I definitely feel the adverse effects right away. I am getting better at self care and ultimately Brian benefits, so it is always worth pursuing.
My life purpose, My Heart, was a gift given to me almost 19 years ago from Heaven. This precious baby boy was not the one that I expected, but in time, I came to deeply love and appreciate the beautiful person he is and the rich life that I do have, because of my special son. In the middle of tears and hardships in the special needs life, there has also been the most intense love I have ever known. When I thought I lacked a voice or an ability to speak up, Brian taught me how to fervently advocate for him. During times of absolute despair and sadness, I have witnessed incredible perseverance and persistence from a severely disabled young man who only asks for love and to be loved. Brian is Love Personified, the perfect teacher to show what will always be important in this life. All I have to do is follow his lead..❤️❤️❤️❤️
Have you ever thought about what your purpose in life is? One example may be the acquisition of material wealth , though these things can certainly be a by product when one fulfills their life purpose. Some people believe their sole purpose in life is to make lots of money, sometimes at the expense of their relationships/ families. It can be very tempting/ alluring, but is it really worth it in the end? As the saying goes “ you can’t take it with you”. I doubt most of us will be thinking about our bank accounts on our deathbeds. Instead, we will be reflecting upon family, friends, and others who added love and meaning to our lives, as well as our own contributions during our brief time here on earth.
There is a distinct difference between the material and the soulful: one is temporary and the other is eternal. Material things are satisfying for a season, but will never quench the desires of your spirit. Of course we all enjoy the trappings that money can buy and those things in themselves are not the problem. The issue becomes when material things become our priority at the expense of our relationships. We have all seen the disastrous effects of what happens when bad choices are made in this regard. No one really wants that to be their life story or ending. It’s just not worth it and it simply won’t matter in the end.
I have always been fascinated by Brian’s lack of interest in any material things. Christmas and birthday presents, for example, mean absolutely nothing to him. He has recently showed some interest in unwrapping gifts this past Christmas, but his attention to the actual gifts themselves were fleeting. For a long time, I felt very sad that the toys we thoughtfully purchased meant absolutely nothing to our son: it was just another reminder of autism stealing something else that was a basic pleasure to most. I had to remind myself that this was not about what I wanted for Brian, but what he wants for himself. As his Mom, my job is to provide Brian with opportunities and exposure to as many things in life as I can, but ultimately I must respect his choices, as hard as that can be at times. It took a very long time for me to learn and accept this fact.
When I learned to become more of a student of Brian, rather than his teacher, I began to discover my true purpose in this life. Don’t get me wrong- teaching our children is very important and fundamental to their development, but sometimes we can get so caught up in the weeds of accomplishments/ expectations for our kids that our priorities can get out of order- how important is XYZ? Will ABC really matter 5, 10 or 20 years from now? How about what they really want? What will ultimately make our children happy? How can we go about helping our children live their best lives on their terms, without losing ourselves in the process? These questions were the segue that lead me to becoming a student of Brian. After a long time of sheer exhaustion and often frustration, I was finally confronted by a thought on one particularly difficult day: do I want to just survive this special needs life or actually thrive in it, despite the inevitable obstacles ? Do I believe this is even remotely possibly? Yes, I desperately wanted to believe, since I was near the end of my proverbial rope. I figured I had nothing to lose at that point and potentially something to gain, so I was more than willing to try- anything!
I will admit that being a student of Brian is a tricky business: he has severe learning disabilities and is nonverbal. It has taken countless hours of observation to understand certain behaviors and learn what Brian is thinking. Augmentative communication has certainly bridged the gap of the unknown, for which I’m extremely grateful. At least I have some insights as to what Brian’s thoughts and preferences are and I do believe there is even more from him to learn and always will be. It’s just very slow to surface, often requiring a great deal of patience and a belief that things will unfold in their own time. I have also learned through my mistakes and experience as Brian’s Mom. Ultimately, what Brian really wants is what all of us want: to love and be loved. It’s that simple! My job, I discovered, is to provide those opportunities that will realize those desires of Brian’s heart. By the grace of God, I try to do so, one day at a time…My hope is that I can continue in this mission until my last breath.
My life’s purpose doesn’t mean that I lose myself or what is important to me in the process. When you are a student of your special child, with an important mission to accomplish, you ultimately learn to create a balanced life for yourself out of necessity. The long haul requires it. Brian will not benefit if I don’t take care of myself, so I make sure now to take breaks, big and small. I read for pleasure, write, and exercise. I try to eat well, and more recently, take quick cat naps. It’s the best acts of self love that I can do, which in turn, allows me to love others and engage in meaningful relationships. I am so grateful for these gifts. My cup no longer runs empty when I make a daily decision to do these things. It’s that simple. If I choose not to, I definitely feel the adverse effects right away. I am getting better at self care and ultimately Brian benefits, so it is always worth pursuing.
My life purpose, My Heart, was a gift given to me almost 19 years ago from Heaven. This precious baby boy was not the one that I expected, but in time, I came to deeply love and appreciate the beautiful person he is and the rich life that I do have, because of my special son. In the middle of tears and hardships in the special needs life, there has also been the most intense love I have ever known. When I thought I lacked a voice or an ability to speak up, Brian taught me how to fervently advocate for him. During times of absolute despair and sadness, I have witnessed incredible perseverance and persistence from a severely disabled young man who only asks for love and to be loved. Brian is Love Personified, the perfect teacher to show what will always be important in this life. All I have to do is follow his lead..❤️❤️❤️❤️
marvelsandmoxiedotcom 