Oh, Good Grief!

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! 😘😘❤️❤️


Until next time, thanks for reading! 😊

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