I often think about one of the precious blessings that has happened as a result of having a disabled son: the friends I have met along the way, specifically, other special needs Moms. Chances are, we would have never met had it not been for our children. Perhaps we don’t even have too much in common, except for the concerns, issues, hopes, and dreams that all of us have for our kids. Yet, ultimately we discover just how much we are the same in our thoughts and feelings versus being different. It makes sense that we will not get along with every parent we meet in the special needs world, after all, we are still individuals with diverse opinions and personalities long before we had our children. For the most part, though, it has been such a gift and a lifesaver to have met such good women who “get”‘this often very difficult, rewarding, and exhausting journey.
While there may be some commonalities that all of our kids share, each one also has very unique attributes of their own, adding to both the mystery and frustration in special parenting. There are concerns about everything from eating to sleeping, education, recreation, and the future when we parents are no longer here. We learn that each of our kids have quirks, repetitive routines, difficult behaviors, and an affinity for the Disney channel even at 17 years old and beyond! No one understands a meltdown of a disabled teen better than another special Mom. She will extend compassion and assure you that she has been there too. Does your special child have an obsession with toddler tunes, Christmas music, and the Chicken Dance (Brian’s new favorite)? Chances are, you will find yourself in good company with other special families who can share similar interests of their children , if not the very same ones! Thank God we don’t walk this eventful and often isolating, special needs life journey alone. It takes time, effort, and opportunity to form relationships with other special Moms, but it’s especially paramount in our situation to find that “safe place to fall” especially when the chips are down and your at the end of your proverbial rope.
Many of us wonder what our kids will do when they are formally done with special education? Where will they go? Where will we live? So many scary questions, with no definitive answers… We will be approaching this juncture with Brian in the near future. We know many special families who are closer to this reality than we are. I learn so much from the wisdom and experience of the parents with older children. No one understands this predicament ( and many others) better than a good special needs mom friend. We share our hopes and fears regarding our adult disabled children’s future. We also share information and ideas to make our kid’s lives better in the here and now while we are looking for long term solutions. A listening ear, sharing ideas, and encouraging one another in similar circumstances goes a long way. Sometimes, this support from a friend can make all the difference between either getting through a very difficult day intact or not.
I marvel at the tenacity and strength of the special Moms I know who “ fight the good fight”’ daily on behalf of their children, in all areas of their lives. I am inspired by them and want to emulate them. These are also the same women who are a big hot mess when their child’s numerous needs and challenges become too overwhelming. I realize that I am in very good company as I often experience the exact same thing with Brian. Depression may also take a strong foothold in special moms lives at times, resulting in multiple dirty dishes in the sink, piles of laundry a mile high, and so much more, BUT, these moms will still make the time to be there for you. Special sisters are just like that! We may not always have the right answers to share with one another to make things better, but just being there and showing support, makes all the difference. I know these things have certainly sustained me for almost 18 years and counting!
Just how those special Moms with older children have shared their tips, strategies, and wisdom with me, I, too, try to “pass the torch” to Moms with younger special children with the knowledge and experience that I’ve accumulated over the years. It’s so important to keep this trend going for the good of all special children who will come after ours and their families. The Internet has also made all the difference with online support groups, where help is just a click away. I can only imagine how very difficult and isolating it must have been for families with disabled children prior to this fabulous technology. We are extremely blessed to live in an age where excellent resources are “virtually” available almost immediately and especially over this past year. Texting has also been a lifesaver for those immediate, “must know” moments between special moms that can offer information, assurance, and peace of mind regarding challenging issues that their children are going through.
We special moms share a unique vocabulary, knowledge, and experience in our world as it pertains to our kids: IEP meetings, ABA therapy, sensory integration disorder, dual diagnosis, child study team, transition, OT/PT/SP therapies, ESY, hippo therapy, antecedent/behavior/ consequence (ABC), transition, CBI, DDD, SSI, and so much more. We have learned a lot over the years together, and often discuss the aforementioned with a variety of emotions, frustrations, and elation when those victorious moments with our kids have happened or not. Most importantly, special moms offer hope to each other, the elixir that is essential to endure this long term marathon with our kids. A reassuring hug goes a long way too!
Sometimes, we special moms may have an opportunity to go back in time together, albeit briefly, and detach from the cares and many responsibilities that accompany the special needs life. We are able to laugh and see the humor in our complicated lives. We can temporarily forget our son or daughter’s behaviors and focus on ourselves and the present moment. Our conversations are sometimes about everything else but special needs, and that can really be refreshing! We encourage one another to take a mental break and practice self care in a variety of ways to sustain us, before we are back in the trenches with our kids. We remind each other to “keep on keeping on”, through our words , actions, and prayers. Sometimes, silence and a reassuring hug is what we need most…
Thank you, Special Sisters, for lighting the way on a journey that can be very dark and dismal at times. I appreciate your support and wisdom and greatly admire what you have done and sacrificed on behalf of your sons and daughters. You are a force to be reckoned with and are some of the strongest people that I have ever known! Your advocacy skills and resourcefulness are legendary and immensely helpful. Thank you for your willingness to share ideas and solutions that have been sometimes been life changing! We are part of a very special sisterhood that will always be essential, no matter where life takes us. I am so very grateful to be a member of this very exclusive club. May we continue to be a blessing to one another in both the good and challenging times that lie ahead for our children.
Until next time, thanks for reading! 😊