10 Personal Truths About Down syndrome and autism

Having a child with a dual diagnosis of Down syndrome and autism is something I could have never imagined before having Brian. If you told me years ago that one day I would have a son with these complex conditions, I would have said you’re crazy and that it would never happen. In my perfect world, I only knew typical, healthy children, even though my undergraduate degree from college was in special education. Ironically, I had volunteered with, babysat, taught, and was a camp counselor for children with disabilities starting at the age of 14. During this time, I was able to separate my work life from my personal life. Never in my wildest dreams did I ever imagine actually parenting a disabled child, for that was for other people, I only chose to work with this population and fully expected to live my own life the way I wanted to.

We may make our life plans, but sometimes, God has different plans altogether for us. These plans may not be what we had hoped for or wanted, in fact, that was definitely how I felt about Brian’s disabilities , especially in the early years. I was angry back then and asked God “why?!” I had already worked with disabled children, wasn’t that enough?! Why did you allow this to happen? How am I going to do this? You ask too much of me! For a long time, I was scared, angry, isolated, and a victim. I would go through the motions of motherhood and made sure that all of Brian’s needs were met, but in my heart I was often bitter about my lot in life and resentful to be a member of a club that I wanted no part of. It would take another life-altering event to finally wake me up. I had finally come to the end of myself.

When I was diagnosed with colon cancer in 2009, I came to grips with my own mortality for the first time and had the realization that my 6 year old son could possibly lose his Mom if surgery and chemo were not ultimately successful. Finally, I woke up and grew up at the same time. Many precious times with Brian that I took for granted up until that moment suddenly meant everything to me. My focus and heart shifted to where they needed to be: being fully present with Brian and kicking cancer to the curb with all of my determination and strength. God gave me the grace to endure the whole ordeal; there was no other way to get through it. I was also blessed with incredible doctors, nurses, family, and friends, my angels from Heaven, who supported me and loved me through this journey until the last CAT scan at Year 5, when I was officially declared “cured”.

It’s hard to describe just how incredible it is to hear such wonderful news! All of the treatment, side effects, and waiting for test results made this moment especially poignant. My heart and spirit had also been cured of a resentment and bitterness, replaced with a compassion and a new appreciation for my life. Because of cancer, I became a new creation with a renewed purpose and appreciation for what I DID have, despite the illness, as well as the disappointments, difficulties, and heartaches in raising a disabled son. For the first time, my perspective was that of a “ half glass full” versus a “half glass empty” mentality. I can’t tell you the numerous times when this line of thinking has come in very handy. In fact, I can’t imagine going through life’s challenges without CHOOSING a positive attitude. It’s definitely not an automatic choice, in fact, I often have to work at it, but the alternative is no longer appealing. I will do anything now to maintain joy and peace of mind, despite the difficulties, and have found that it is truly possible when you trust God with everything in your life and give your problems over to Him, every moment, of every day..

As a result of this eventful life that I lead, I have become quite the student of Brian over the years and can say that I have earned a PhD in Brianology! This doctoral distinction gives me special credentials as Brian’s Mom, knowing him better than anyone else, yet, because of his dual diagnosis, he is still a mystery to me, a new territory that is yet to be explored. It’s the curious dichotomy of being with someone all the time, yet you don’t know everything about them. My detective and observational skills have been heightened/sharpened since Brian’s arrival into the world, yet over 17 years later, I am still learning and being surprised by my handsome, complex son. Down syndrome and autism profoundly effect the way my son communicates, thinks, and learns , so it takes a lot of people, effort, and time for progress to ultimately occur, but it does! I have had to adjust my preconceived notions of what progress means from Brian’s perspective. It has taken me time and many lessons, but I think I’m finally starting to get the hang of it! Down syndrome and autism have a lot to teach when one is willing and ready to learn the inevitable lessons that will follow. Here are the truths I have personally learned so far about Down syndrome and autism:

1. Down syndrome and autism can be heartbreaking and a mystery. No matter what I do or try, sometimes there is no solution for the challenge at hand and I must accept that and move forward.

2. Down syndrome and autism makes you extremely grateful for your own abilities and reminds you never to take little things for granted .

3. Down syndrome and autism would have been akin to a death sentence a few decades ago for those afflicted and their families, but individuals with the dual diagnosis can lead full, meaningful lives with the proper supports, resources, and life experiences. Brian is living proof! 😊

4. Down syndrome and autism cause me great concern about Brian’s future as an adult, so I try to plan ahead as best I can, yet still live in the present moment. It’s not always easy and sometimes becomes harder as Brian gets older.

5. My son’s Down syndrome and autism is not the same as your son’s dual diagnosis. Each of our children are both unique in this regard, with certain similarities, but also with many differences.

6. Down syndrome and autism have made me: cry, laugh, feel depressed, hopeful, and resourceful. I never knew I could experience such a range of emotions, sometimes all together in one day!

7. Children who have Down syndrome and autism are very different than those children who have either Down syndrome or autism . Our kids fall somewhere in the “gray zone”; they are unique and are “differently-abled” in many more complex ways. I felt that I arrived in Beirut versus Holland once Brian was officially diagnosed with both disabilities at 30 months old.

8. Down syndrome and autism have been a burden , but Brian, especially, as well as my husband and myself, are determined to not let it have the upper hand in the way we live our lives, despite the hardships that it brings on all levels imaginable.

9. Down syndrome and autism have revealed an inner strength, advocating abilities, and a resolve that I never knew existed within myself. I am often a mess, but I am also a strong Mama Bear who only wants the best for her son and will do whatever it takes to help him live his best life.

10. Down syndrome and autism is a part of Brian, but it doesn’t define WHO he is, my beautiful, loving, resilient, quirky, and complex son. Despite the challenges and exhaustion, I have the privilege of raising one of God’s special children who loves, hugs, and laughs with all of his pure heart, my forever boy. How many 17 year olds freely give their parents genuine bear hugs and kisses? For these gifts, and so much more, I am forever grateful..❤️❤️❤️❤️

Until next time, thanks for reading! 😊

The Case For Kindness

There is no doubt that 2020 will go down in history as one of the most stressful and politically polarized years ever. The corona virus in particular has exacerbated our lives on every level imaginable. We all know many friends, as well as family members, who were directly impacted by this horrible virus. Most of them eventually recovered from Covid 19, but some tragically did not, leaving intense grief, sorrow, and anger in the aftermath. Life as we once knew it has been radically altered with a desperate desire for normalcy once more. Being locked down at home certainly does not help our stress either and perhaps gives us too much time to think about things and to be on social media.

Don’t get me wrong- social media has been a blessing in terms of staying connected with loved ones and friends during this turbulent time. We definitely feel less isolated as a result and I am grateful for it. As a matter of fact, I find Facebook to be an excellent diversion and it often lifts up my spirits. I especially love the photos and positive/humorous posts. But there are also the negative comments, the “virtual” debates with complete strangers ( which baffles me!) that become nasty, especially as it pertains to politics. I’ve also seen similar posts in special need groups, which is particularly disheartening, as we parents already have enough on our plates with our disabled children so the last thing we need is to feel judged. Sometimes words can also be misinterpreted and taken the wrong way, which can certainly happen if your child is having an especially hard time and you are operating on minimal sleep.

The last thing we want to feel when we use social media as a means of expression is invalidation or minimization. Each one of us certainly has a right to express an opinion on whatever the topic is, whether it’s related to special needs, climate change, or the upcoming presidential election. And there is certainly enough opinions on both sides of the fence for discussions on everything that could probably last for days! Thank goodness we live in a country that allows freedom of speech and may we never lose this right! However, I do find the level of vitriol/ disrespect if someone doesn’t agree with your particular point of view on social media quite appalling! Unfortunately there is as much strife as there is the “good stuff” to the point where some days I have taken a break from social media altogether. Yet, it doesn’t have to be this way: we really can get along “virtually” if we go back to some valuable lessons that we learned as children and implement them accordingly.

Remember “ if you have nothing nice to say, say nothing at all”? I do remember learning this as a child, a good lesson in showing respect towards

others, especially when you disagree with them. Sometimes it’s just not worth the effort to start a debate on a topic that you know will end badly. It really depends on who is involved, and what your motives are: how important is it really? Often it’s not worth the argument. However, if you feel the subject deserves attention and can express your opinion without tearing down the other person in the process, especially in a public forum, that’s ideal. Many times, though, we will have to “ agree to disagree”- this has certainly been my personal mantra , and I actually expect it, as we diverse humans are the sum of our many varied experiences. I have found if there is a particular topic that I’m particularly passionate about, I will contact the individual privately to continue the discussion if they are interested. If they are not, that’s OK too, then it’s time to “let it go” as Elsa from Frozen says.

Sometimes, though, no what matter what we try, it just may be best to “scroll on by”! Or we can change our settings in Facebook to filter what we see on our newsfeed. We can select our friends and let the strangers or former “friends”go. It’s OK if people don’t agree with us and we can often still be friends when we practice mutual respect. We should take Charles Dudley Warner’s words to heart: “ politics ( or fill in the blank with whatever topic you wish) make strange bedfellows”. There is a reason why this sage advice still holds true over 100 years later. Life is too short to be wasted on something that won’t matter next week, or even tomorrow . Sometimes, the discussion is just not worth having and it’s best to “agree to disagree”.

Suppose we are more intentional with kindness and helpfulness in cyberspace instead? I immediately gravitate towards those posts and want to learn more and be uplifted. I look forward to going on Facebook because of extraordinary people I know who are so clever, inspirational , determined, and humorous. Sometimes a shared meme or a photo is just what my mind and heart needed in that particular moment . Kindness brings out our best side and relieves stress. Kindness doesn’t have a political or religious affiliation and is for everyone who wants to receive it and share it. Kindness is a gift that we give ourselves, especially when we share it with others. What our world really needs now is random acts of kindness, big or small, to alleviate the sadness of so many who are hurting right at the moment.

We may forget what someone says or does for us, but we will never forget how someone makes us feel. Kindness in all forms, on all social platforms, has the power to inspire, change our attitudes, perspective, and hearts, even if it doesn’t change our minds. It’s a movement we can all be a part of and doesn’t cost anything. Kindness only requires willingness and an expectation of the good, which is always the result. Kindness is the one contagion that we don’t have to be afraid of. Kindness can virtually and literally make our world a better place, especially in the words that we choose when speaking to others, as well as our actions towards them.

Kindness is a conscious choice that we can all agree on and it can make our current situations a little easier to bear. I try to practice kindness daily and have discovered that when I do so, my day goes so much better. By getting the focus off myself, I feel physically energized, and my mind dwells on positive things, which is what I want to feed it with. Most importantly, helping others who may need a dose of kindness can make all the difference between a good or a bad day. It is a privilege and a blessing to have such opportunities to give, as well to receive kindness from others, during our times of need as well. Yes, our literal and virtual world can never have enough kindness in it!

May your days be filled with serendipitous moments of kindness of the giving and receiving kind. May we always remember that our words can be a balm to heal the wounded spirit or cutting like a knife to the heart and that we always have a choice of which words we will use. Finally, may we be blessed tenfold by our acts of kindness and continue to pay it forward.

Until next time, thanks for reading! 😊