One of the most precious gifts that I have received, because of Brian, are the friendships forged over the years with other special needs parents. Chances are, our paths would have never crossed otherwise, and it is because of these friends, that I am a wiser, more compassionate, and assertive individual, than during the “pre-Brian” days. I find great comfort and am often validated while listening to and sharing our children’s experiences with other special Moms. Our journeys can be isolating and lonely. While others outside of our special sphere can certainly empathize and be very supportive, there is nothing like another special Mom who “gets it”. And there is certainly a LOT that goes on!
I am always amazed how the same, yet very different, our disabled children are when speaking with other special Moms. These differences are primarily due to the specific nature of our kids disabilities, yet the behaviors, teen angst, favorite activities, etc. can be very similar. We special parents often experience the same concerns, emotions, hopes and dreams both for our kids and for ourselves as well. When Brian was first born, I was a thirsty sponge, drinking in as much information about Down syndrome ( then autism ) as possible, primarily via the written word, the Internet, and medical professionals. I didn’t want to miss any opportunity to help Brian in any way . In retrospect, I realize I was sometimes trying to ” fix” Brian in certain ways, instead of accepting him for who he was, disabilities and all. Such were the tempestuous forces of fear and despair that drove me in those early days…Yet to this day, I am still an information-seeker for my son to help him live his best life. The difference is now, I am driven by hope and belief of what is possible, whether things actually work out or not. Tomorrow is another day, not the final day that is written in stone, as I so often thought in the past. It was other special Mom friends, who over the years, helped me to arrive at this conclusion through their generous wisdom and support.
My grief held me back in those early days for a while before I was really ready to share with other special parents, so I had to start with the smallest of baby steps. Eventually, I was ready to connect with a small group of Moms via our early intervention home-based therapists through a monthly support group meeting at a local McDonalds, when Brian was just an infant. It was definitely awkward and difficult. I think each one of us were still trying to process our new realities, so the information exchange among us was rudimentary at best. I felt even more isolated during that time, especially after Brian’s open heart surgery, which kept us home for several weeks. There was definitely some postpartum depression thrown into the mix as well, so it clearly was not the best of times. Eventually, life changed again as it always does, with the help of a center-based early intervention program and a parent support group on the premises. The sun finally came back out, thank God!
I felt a real sense of relief that I was not alone in this second support group and that Brian was truly accepted for who he was. I also learned so much from both the social worker (who had her own daughter with special needs) as well as the other parents. What a blessing to get tips and referrals, from sneakers to doctors, and everything in between! Parents are always the best source of information and continue to be so, in my experience. The friendships that formed as a result of our kids, was just an extra bonus, although that is not always the case, but that’s OK. I really don’t need a gazillion friends, rather, just a close few ones. If you are fortunate enough to have even one true friend in this life, I believe you are very blessed!
Sometimes, the only thing that I have in common with another special parent is the fact that our children just happen to be disabled. If our children are sharing the same experience, our reactions to what is happening may be very different. Our beliefs may also differ in terms of what we feel is best for our children. Variety is the spice of life, and we can agree to disagree! I don’t know what’s best for your child and visa versa. Unfortunately, not all special parents are supportive of one another at times, whether justified or not, resulting in misunderstandings, hurt feelings, and broken relationships. Sometimes it’s for the best; other times it’s an opportunity to create a closer friendship. It’s a shame when a friendship does come to an end, but perhaps the original foundation of the friendship was never built on solid ground to begin with. There are seasons in life and always other fish in the sea. As I get older, I realize that how and with whom I spend my time with is very important. Free time is too minimal and life is way too short to spend it with people who do not support, love, and accept you and your special child for who they are.
It’s fascinating how children with the same dual diagnosis as Brian are very similar at first blush, yet so radically different when it comes to each child’s abilities. This is something I would have never guessed ” looking from the outside in” prior to Brian’s arrival. Just another misconception of special needs that I needed to learn in the beginning. I am always learning from our kids and the other special parents, everything from best behavior practices, to how to really unwind and speak my truth, often over a cup of coffee or a glass of wine. These are times I really look forward to! Sometimes the very best moments have been those when I just listen and not offer any advice, unless I’m asked. Sometimes a friend just wants to be heard and doesn’t expect a solution to their problem. I, too, sometimes just want to vent, cry, or laugh about something special needs related or not. In the end, each one of us are just seeking the love and solace of a good friend. I try to be the friend that I would like to have and am truly grateful for the friends I do have. They have enriched my life for the better and I hope I have done the same for them.
Until next time, thanks for reading! 😊