Life is an adventure and is often filled with unknowns, risks, and getting out of our comfort zone. It can also be quite mundane, repetitive, and painfully slow, in fact, I believe I have actually seen grass grow while waiting for certain things to come to fruition… Such experiences also describe precisely what it is like to raise a child with special needs. More often than not, this journey for most of us is the latter. We wait years for our disabled children to accomplish certain goals. We often wonder exactly how much longer they are going to remain in the Land of One or Two Step Directions.. We parents, like our kids, are so used to the repetition of routines and behaviors, that literally any little change can even throw us completely off guard. We adapt to our own version of “normal” in our special needs circles and homes so much so, that sometimes we forget there is a whole, big world out there to explore. The very thought of new adventures is exciting and simultaneously frightening. It also involves huge planning , coordination, and risk taking. We may fail, and it’s certainly easier to stay home, so perhaps it’s best not to rock the boat. Yet, how will our kids grow, become part of an inclusive society, or just be exposed to new things, if we don’t try?
As Brian and I grow older, I realize how important it is for both of us to expand our comfort zones as best we can, when we can. I feel some of the best gifts that I can give to my son are various life experiences that will engage him, help him to learn, and provide him with inclusion opportunities so that he can also experience life to the full, liberty in all its forms, and the pursuit of happiness, just like the rest of us. How fortunate Brian and other disabled individuals are to live in a time where most people are accepting of others with disabilities. While things are certainly not perfect, Brian is able to do things that were out of the realm of possibility even a few decades ago for special needs folks. There is still much work to be done, but all things considered, I think Brian would agree that his life has purpose, joy, and beauty because of the huge village that supports him, as well as the experiences he has been exposed to, both in good and bad times.
We decided to totally break out of our comfort zone and return to Dallas last week during the Spring break. My husband had company business for a couple of days, so Brian and I were left to our own devices with the rent-a-car to “tour and explore” various adult special needs programs that I had contacted and set up appointments with previously . I was excited and very anxious at the same time, both looking forward to seeing what would be potentially available to Brian after graduation, while dreading how he would handle the many transitions during our stay in Texas. Admittedly, it was going to be a LOT of new/unfamiliar places, people, and things for him to take in during our 6 day stay. It was expecting a lot from Brian. I already knew from previous experiences how he reacts in these new situations, so a part of me definitely wanted to be back in my NJ Comfort Zone, where it was mostly peaceful and uneventful. Yet, there was also a part of me that was determined to proceed, despite the outcome, whether it was the worst or best idea ever. It was a risk too good not to take. We had also allotted research, money, and time into this trip, so it was too late to turn back.
I decided on our first day on the road in Texas to acknowledge, then ignore my anxiety by focusing on my driving on the Dallas highways. These roads definitely had my undivided attention; thank goodness for Waze and The Beatles to keep both Brian and myself calm. Brian did scare me to death during the ride to our first tour, however, when he opened his door while I was driving 70mph on the turnpike! Luckily, no one was behind or beside us- that in itself was a major miracle! You can be sure that the car doors were super locked from that point on! As predicted, transitions out of the car to a new place were difficult each time. I had to be extremely patient, hold my breath, and wait Brian out and eventually he would decide that he was ready to enter a new building. After that, he was totally fine, in fact, much to my delight, he was quite engaging with whomever he met, once he settled in. I was so proud of him and was reminded in those wonderful moments last week why it is so important to push our kids and ourselves to try new things: the rewards are often great and it gives our kids new opportunities in life that will help foster their independence.
We learned a lot about the adult programs that we saw and the staff /clients certainly learned a lot about Brian and I. It was a wonderful information exchange and so great to be in the company of caring/knowledgeable staff and endearing clients. Brian was included and treated like a special guest: he responded voluntarily by communicating with staff and even a few clients with the Proloquo speech app on his iPad mini. Brian introduced himself several times via Proloquo who he was, his age, where he lived, where he goes to school, and most importantly, what he wanted to eat, lol! It was such a blessing to see Brian interacting with new people and genuinely enjoying it.. He initiated waves and handshakes with his new friends, where ever we went. Overall, Brian did really well in these new environments and any challenges that arose were entirely predictable. He is maturing, growing up, and seemed to thrive on these new opportunities as much as I did. Most importantly, these successful moments in Dallas gave me the reassurance that Brian will always continue to learn and adapt, despite the transition difficulties and other challenges that he will face in his life, no matter what, because he has shown that he is capable of doing these things. He will make his own way, in his own time, just like he always has- I really needed this important reminder!
I also believe God knew that I needed to see concrete evidence of just how far Brian has come last week compared to the beginning of our journey…Those early, heartbreaking days when we were prisoners in our own home due to severe sensory overload were so excruciatingly painful…I thought we would never see the sun again…I felt helpless and hopeless for a long time as I watched my boy struggle with so many challenges, yet, behind the scenes, God was actually creating something very beautiful out of the ashes of our brokenness and pain. Over time, I would come to understand and see the rich tapestry of our lives with our special needs son, including the many knots and not so pretty colors, interwoven with a beautiful pattern and spectacular colors throughout.
When I choose to focus on those beautiful colors of my life’s tapestry, I see just how blessed I have been to experience so many joyful moments, to see Brian triumph, etc. despite the pain and heartache in this life that is inevitable for all of us. Choosing wisely and trusting God for all of the details in my life, especially the scary ones, ( like Brian’s future) enables me to experience the joy and appreciation for the good in this life right now, in this very moment. Otherwise, it’s just too hard and I end up missing out on many precious times in the present because of worry and fear- I have definitely been there and have done that many times! I still struggle with fear and the unknown, so I continue to make a daily decision to hand over ALL of my problems and concerns to God and trust Him for the outcome. He is ALWAYS faithful and has richly blessed me, despite my doubts and objections that His timing is often too slow for my liking, lol. When I look back at God’s track record in my life, He has been incredibly gracious to me.
Whenever I need a role model for total faith and complete trust, I need look no further than to Brian. He, like all special needs children, is a shining example of daily faith in action: Brian trusts wholeheartedly that all of his needs from sunrise to sunset will be taken care of. He has great faith in his family, teachers, volunteers, and caretakers that he will be provided for. He never doubts or questions any of these things. Brian just gets on with living his life, step by step, with amazing grace and tremendous courage. He is my hero and inspiration to live and love in the literal moment, allowing us both to enjoy and deeply appreciate all good gifts from Heaven. I don’t think it’s a coincidence that Brian was given specifically to us. Our lives are indeed filled with struggles and unknowns and always will be..But there is also great hope, joy, and evidence of God’s goodness in the midst of our challenges, to sustain us and encourage us. I will continue to take my cue from Brian and others like him to see and know that taking risks, like they do, is well worth the rewards that will follow.
Until next time, thanks for reading!