We Are Survivors!

It is time to pat ourselves on the back! We deserve huge accolades, applause, and high fives for all that we do on behalf of our disabled children. This blog is for us- the Moms and Dads, aka: The Survivors and Thrivers in this often crazy and “never a dull moment” life that we share with our special children. Sometimes, I will reflect on the past 17+ years with Brian and wonder how exactly did I accomplish so much on behalf of my son? I don’t know exactly how, but love and determination are the main reasons as to why. Both are powerful forces to be reckoned with and have been essential. I also made a conscious decision to persist, despite the obstacles and setbacks, which have been many along the way. Sometimes things have not worked out the way I hoped for Brian, but when looking back on the situation at a later time, it actually worked out for the best and there was always a lesson to be learned, if I was willing and open to receive it.

A survivor is defined as “ a person who copes well with difficulties in their life”. There are many types of survivors: perhaps you also wear another “survivor hat”, besides one for special needs parenting. Special needs parents automatically become survivors from the moment their disabled children are born. We really don’t have a choice if we are to endure this life long marathon with our kids. In the early years, when we were younger and our kids were smaller, our endurance was stronger. Now, I find the opposite to be true, yet Brian is developmentally still a toddler in many ways and always will be to a certain degree. You can imagine the incredible amounts of patience and time that are required for Brian to achieve the simplest of tasks. I don’t always cope well with these truths; you can be sure there are many mornings when I would prefer to hide under the bed covers. It’s hard to face a repetitive 14 hour day on a Saturday, for example, which is why my husband and I try to get Brian out in the community on weekends to do different things. Such outings are good for all of us mentally and physically, but require contingency planning and packing for all potential scenarios, because you have to be prepared for sudden changes when you have an autistic child. Yes, my husband and I are exhausted by sunset, but like Brian, we are ultimately resilient. It is our nightly prayer that we always remain so for our son’s sake..

Here’s what a typical Saturday looks like for us. Keep in mind that most of the following activities take several minutes to accomplish and require verbal/gestural prompting and hand-over-hand assistance. Brian needs physical assistance with all self care and activities of daily living.

Brian’s Saturday Schedule:

7:00am -8:00am- Wake up, bathroom, get cereal/juice, put dishes in dishwasher , brushing teeth, getting dressed

8:00am- 8:15am – socks, orthotics, and shoes are retrieved and put on

8:15am- 8:45am – make up the bed, put away laundry

8:45am- 9:15am -Brian watches TV

9:15am-10am- Exercise ( walking in the neighborhood or on the treadmill)

10am-10:30am- Snack/Bathroom break

10:30am- 11am- Put clean dishes away/ do laundry

11am- 11:30am- Read Books, aka, Mom or Dad read several books to Brian!

11:30am- 12:00- iPad break

12:00pm- 1:00pm- Lunch: make sandwich, retrieve drink, snacks, cleanup, bathroom

1pm- 5pm -Recreational activity in the community

5pm-6pm- set the table for dinner, watch TV

6pm- 7pm- Dinner time and cleanup

7pm- 8:30pm- Movie time

8:30pm- 9:15pm-book reading, prayers, bedtime routine

The aforementioned has been Brian’s weekend schedule for a long time. Prior to Covid 19, he had participated in special needs recreational activities on the weekends, but of course, these things have been put on hold for the time being. As a result, the weekends can feel endless if we don’t have plans in place. We have been most fortunate this Fall, as the beautiful weather has afforded us many opportunities to be out and about in various places. However, this will be coming to an end shortly as the weather gets colder and the days shorter. My husband and I will need to put our recreational thinking caps back on to come up with other things to do once it is too cold to be outside. Many special families are in the same boat and it is not easy. In fact, I’m dreading being indoors indefinitely, as Winter can seem to drag on forever. We will need to muster all of our strength and creativity in order to cope with what lies ahead, just like we always do, year after year. Yes, we are survivors indeed, despite the frustrations, repetition, and patience that is required for the special needs life. We are sometimes knocked down, but thankfully, not knocked out. We cope, we believe, and we achieve, despite our exhaustion, because our kids need so much! We adapt, in spite of those unbearable moments when I was ready to run away from home ( on more than one occasion). It is during these dark times that I am reminded that my son is a survivor too. He copes with endless challenges related to his disabilities every moment, of every day. Brian accepts his situation, doesn’t complain, and soldiers on. Never have I witnessed such incredible resilience, as I watch my son often painstakingly get through his obstacles. He keeps on keeping on- THIS is what ultimately inspires me to do the very same.

Special needs parenting can be a “just getting by” type of survivorship, (especially with difficulties and mundane things), but it can also be something that transforms our experience as parents for the better. We have fought the good fight with our kids and FINALLY they are able to achieve something that we never thought would happen! For example: Brian was a very late walker; he took his first independent steps (without hand holding) at 5 years old. I witnessed Brian taking his very first steps towards me when he got off his school bus one afternoon. I will never forget that incredible moment! It took a tremendous amount of effort via physical therapy, early intervention, preschool, medical appointments, and time for this milestone to finally happen. There had even been concern that Brian had a spinal issue which precluded him from walking, but thank goodness the neurosurgeon ruled out any abnormalities. My heart sang and my spirit was transformed by this major event! It was the beginning of deeply appreciating every one of Brian’s future achievements, big or small, for I knew just how hard and long it took for him to take that first independent step.

The feeling of gratitude and joy for each of our children’s successes can be an incredible experience. We know exactly what our kids go through; we also know the struggle is real for them, as much as it is for us. Nothing comes easy for disabled children; they have to work very hard for everything that they achieve. It is unfair for sure, but it’s an opportunity to also see how time, practice, patience, and love can positively impact how our children learn and progress, each in their own way and time, according to their individual abilities and interests. It is so exciting to witness that magical moment of achievement, when FINALLY all the months/years of persistence have payed off! We have survived the ordeal and the reward is so worth it, each and every time!

Yes, indeed, we are not only Survivors of the Special Needs Journey, but we are also: Problem- Solvers, Advocates, Cheerleaders, Recreation Directors, Speech, Occupational and Physical Therapists, IEP Specialists, Medical Specialists, Life Skill Teachers, and Vocational Educators. Who knew we would have to be so versatile, that so much would be expected? Despite ourselves, we’ve learned a lot and have become quite proficient in these various roles, mostly by necessity. As long as these things help our child, the effort is always worth it, but the longing for simpler times will always remain. At the end of the day, I really just want to be Brian’s Mom, but I know deep down that Brian’s ultimate success in life is directly related to my willingness to take on these additional roles that will help him to achieve this goal. I am willing, but my flesh is often weak, so survivorship becomes paramount for the long, intense haul. I draw strength mostly from other special parent survivors, especially those who go before me with older disabled children, learning constantly from their acquired wisdom and years of experience. Their honesty is refreshing, the situations they and their children endure are often overwhelming, but there is also hope, a deep love, and a resilience that is also inspiring. We are truly all in this together!

Wishing you, my Special Needs Soul Survivor, all the strength, love, and grace that you will need for this life long journey with your son or daughter. Your child has taught you over and over again just how incredibly strong and passionate you are about EVERYTHING that has to do with them, even when you don’t feel that way. Somehow you continue to cope and forge ahead with great courage , especially when the odds are against you and your child’s disabilities are just too much to bear. You may lose battles, but you will NEVER lose the war. You may temporarily give up- you are only human after all… But inevitably, you pick yourself back up and keep on keeping on for your child, because that’s what Mama and Papa bears do. Now THAT is true love!❤️❤️❤️

Until next time, thanks for reading! 😊

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! 😊