As a parent to children with special needs, I expect that each day will hold something unexpected or unplanned. Some days, it will be a surprisingly positive, monumental or milestone-passing day. On others, it may become a day that takes an emotional, and even a physical, toll. It’s what has become my new “normal.” Yet on one particular day this summer, at an area swim club, I had an epiphany, the catalyst of which was one of every parent’s more challenging situations — peer exclusion. 


Realistically, children with special needs are spotted early by their neuro-typical counterparts — some of who are so relaxed that they enjoy any child in their midst, while others find that any differences lead to some struggles. Not much changes as children age, so as they enter into young adulthood, their instinctive nature becomes further defined, as does how they view differences. 


At the pool, I watched each of my kids engage various children — some who seemed to enjoy my children’s company, others who simply gawked at them and, ultimately, swam or walked away. At that moment, I realized my children were on the cusp of a new developmental minefield littered with not only hidden bombs, but also shrapnel and collateral damage potential at every turn. I braced myself for those moments and began to immediately worry and concern myself with what tools I would arm my children with to successfully navigate these awkward, albeit painful, social scenarios. 


  Plenty of therapists, social coaches and other special needs parents have told me countless times that we need to advocate for our children by supervising and supporting play schemas so that we can coach and script social scenarios. I’ve just never truly understood when those teaching moments need to wane. When my daughter is 18, working outside the home, and is confronted by a fellow peer at her job, who will be there to coach her or script a scenario towards remedy? Not me, I’d wager. Therefore, given many years of active ‘coaching,’ I felt this summer was a great time to lengthen the proverbial tether and allow my children to gain real-world exposure — without my hawking over them — just as parents of neuro-typical children seem to do.     


And, as I learned on one particular day, this is necessary if we want to truly prepare our children and give them the tools they need to one day be successfully independent. 


 



Setting the Stage

My daughter, age 10, perked up when she saw two fellow classmates arrive at the pool with their families. The girls were seemingly glued together, however both of them knew my daughter and had befriended and enjoyed her during the school year. I had seen this many times while hosting playdates and outings, including visits to our home. I, in fact, believed they were really good friends!  


Needless to say, my heart started to break shortly thereafter as my daughter, who has Down syndrome, approached them with a warm hello and that pure, unadulterated excitement that spews out of little girls. Rather than reciprocate, the girls instead brushed her off and jumped into the pool without her. I stared in shock. To my daughter’s credit, she jumped in after them and attempted to keep up — but they did all they could to leave her in the dust. My bright little girl swam to the side, joined me at my chair, and cried. Of course she cried — her feelings had been deeply hurt. At the same time, this was it — a real opportunity. I steeled myself, held her close, wiped her tears, and asked what had happened.


  She told me how the girls had ignored her, swam away, and how it made her sad. With tears welling in my eyes, I looked at her and started my parental speech: “Oh, don’t let those girls get under your skin, baby girl. If they don’t want to play with you, you have so many others you can play with today — including me.” She replied, “But I wanted to play with them and they just swam away.” My response, “Yes, honey, and perhaps they are playing a two-person game, which is why they did what they did. It doesn’t really matter, honey, because you can make new friends anywhere — and today is a day for you to practice.” 


  And in that moment, she stopped crying, looked up and around to see who had seen her tearful moment, hugged me tighter, and with staunch determination said, “I’m going back in the pool!” 


  I couldn’t have been prouder of my strong-willed baby girl. She wasn’t going to let anyone get the better of her! My heart, while broken, began to feel relief. And then, it hit me.  This was the first of many situations that children with special needs face every single day. Most of us easily navigate social situations with grace, courtesy or basic attitude. But my daughter, she did it….with fortitude. 


  Not 15 minutes later, two teenagers popped over to introduce themselves, with my daughter lovingly tucked between them. The smile on my daughter’s face was as big as I’d ever seen as she had, completely on her own, made not one, but two new friends! The three of them walked off to the pool and I watched them all practice underwater flips and handstands, as they giggled together and chatted until the sun went down. 


  Further, the same pair of teenagers sought out my daughter during each of our successive visits — even when they’d arrived at the pool with other friends in tow. Our daughter was no longer being excluded, she was being included — and what made it more delectable was that she was doing so on her terms! She didn’t let her feelings disable her ability to move forward. Instead, she used it to power her perseverance. I wasn’t by her side coaching her or supervising her play. I wasn’t chatting up parents and asking them to befriend or play with my children. I didn’t have to tell her what to say or do. She did it on her own — just like any neuro-typical child. 


  Children with special needs, be-cause of their diagnoses or delayed skills, are often presumed to be less ‘able.’ However in my short 10 years as a parent, I’ve met numerous families and children who have taught me the following valuable lesson — each of which were applied when sideline-spectating my daughter’s milestone moment:  “The right perspective makes the impossible, possible.” 


  Every facet and element of our daily lives is attributed to our personal viewpoint. If something is viewed as negative, it will feel negative. However, if viewed with a different lens or from a different angle, the situation can easily become opportunistic. Many of us are so exhausted that it can be challenging to be optimistic, yet in truth, every situation, opportunity and condition can be viewed in either a positive or negative light.


When coal handles stress well, diamonds are created. Many of the brightest and most monumental moments (child’s first steps, awarding of a diploma, passing a driver’s test, etc.) are the result of intense stress or strain. Ask any special needs parent who has successfully won an IEP battle, gained support funds from an insurance company, or run a marathon alongside their child (Team Hoyt!). For parents of children with special needs (and their children, for that matter), stress can frequently become an everyday state of being. Too often, we relent under it and lose sight of the rewards yet to come. We’re a society overwrought with convenience, speed and superficiality. Therefore, focusing on what truly matters can turn even the most stressful days into happier ones. 




The bigger the obstacle, the greater the victory upon overcoming it. Whether it’s your child’s first giggle, smile, sign, word, or step, milestones are, simply, goals. We all set our own and regularly reset them in an effort to push our spirit, our minds and bodies to limits we never believed imaginable to achieve those goals. Our children are no different. They too have goals — even when obstacles rest squarely in their path. 


As parents, our job is to encourage, support and praise steps forward, while comforting our children should they backslide. Overcoming obstacles may be an arduous, daily effort for some, but the taste of victory is so delicious, it will always ensure your return for more. 


A momentary heartbreak can be-come a lifelong victory. Whether you are a parent who was not invited to a social gathering, a forgotten mom from a moms-only coffee, or a child that didn’t receive a birthday party invite, the momentary hurt feelings are just that…momentary. Interestingly, as a parent to children with special needs, I’m grateful for the fact that human nature does not allow people to veil who they are for very long. Whether due to discomfort, lack of knowledge, insecurity or a poor personality, some adults (and children) do not feel comfortable engaging families or children with special needs. And that is OK.   


Fortunately, there are plenty who genuinely care less about differences and instead, focus on making a difference. Many of us work hard to ensure our children (and ourselves) are properly included. However, an important question to ask before putting on the full-court press is whether it will be worth it? 


  Should you get invited to all the events? Will you or your children feel comfortable in those settings? Do you believe you can form genuine friendships or merely superficial acquaintanceships? Find your squad and game on!