I'll start this post by fully admitting that the jury is still out on my parenting and there is still plenty of time for me to mess up all the things. Just saying...
The Other Child
Navigating the challenges of raising a child with special needs is obviously hard on the parents--but what about the siblings? It's easy to consider them an afterthought, the "low maintenance child" or, and I cringe as I type this, the third parent--and many stressed out caretakers do. However, at what cost? I've been thinking about this a lot lately as my own daughter is growing and maturing--seeing the world through her eyes has become a focus. I am aware now more than ever that my typically developing child does not get out of this special needs world scot free just because she's not the one with the disabilities.
So how do we parent our typically developing children in such a way that they can thrive despite their circumstances at home? This is the big question I've been seeking answers to. What I've learned is that The Beatles were wrong. Love is, in fact, not all you need. Now don't get me wrong, love is certainly necessary, but when it comes to the complexities of parenting a typically developing child amidst a medically fragile sibling, it's simply the starting point. What you actually need is love and a whole bunch of intentionality. After a bit of life experience, professional work as an elementary educator and listening to the experiences of other siblings who grew up in this type of household, here's what I've come up with to guide parents through this unique parenting experience...
If Love's Not All We Need, Then What's the Answer?
Allow your typically developing child to forge their own identity. Sure, special needs parenting can absolutely define your life as a parent. You eat, sleep and breathe your child's condition. You become an expert on it. You do everything you can to fix it or treat it or simply live with it. That's your job as a parent. But what about your typically developing child? It's critical that typically developing siblings are given the freedom to seek their own identity--who are they outside of the special needs circumstances that weigh so heavily on their home life? You can foster the development of your typically developing child's identity by providing them with a wide array of experiences outside of the home. Whether that be activities like nature explorers camp, musical theater, karate, dance or time spent away from home with extended family and friends, those experiences can open the whole world up to your typically developing child and encourage them to think outside of their home life when it comes to who they are and who they want to be. Plus, it affords them the sense of normalcy they've been robbed of in their daily life. If cost is a concern, consider taking them to get their very own library card and share with them the pleasures of getting lost in a good story or teach them about a passion you have. Perhaps they can help you in the garden or with some simple cooking. Maybe you love to hike or play basketball--involve your typically developing child in your cherished hobbies as a way to grow their interests, foster their confidence and bond at the same time.
Create a safe space for them to share their thoughts and feelings. Often, our typically developing children keep their feelings to themselves for fear of burdening us with yet something else to worry about. Instead, they keep their fears, worries, frustrations and concerns bottled up. This is counterproductive because unprocessed feelings lead nowhere good. As author Bessel van der Kolk explains in his book, The Body Keeps the Score,"Neuroscience research shows that the only way we can change the way we feel is by becoming aware of our inner experience and learning to befriend what is going inside ourselves." Whenever you can steal a quiet moment with your typically developing child, ask them about their feelings. You might be surprised by what they share, how much they absorb and even by some of their misconceptions. On the other hand, if your typically developing child is acting out due to jealousy or feelings of lack or inattention from parents, try to reframe what's happening. Instead of getting upset yourself and yelling at or punishing the child, try pointing out to them that they are likely frustrated, angry, upset for good reason. Thank them for sharing those big feelings with you and try to redirect or diffuse the situation in some other way like suggesting you take a walk together, do a puzzle or simply cuddle on the couch. The key here is to let your child know that their feelings are welcome and valid--something to be acknowledged and worked through, not buried and disregarded.
Balance their responsibilities. Depending upon the age of your typically developing child/children, it can be oh so easy to lean on them as an extra set of able hands in the house. And for good reason! Raising a child with special needs is an all hands on deck endeavor and sometimes two hands really aren't enough. The key here is to balance the responsibilities. For example, cleaning up the playroom is a task that we all do to contribute to the cleanliness of our home, regardless of who made the mess. So if my child with special needs goes into that room and dumps out all 10,000 legos, I will certainly call upon my typically developing child to help clean up the mess since she enjoys that space as well. After all, there are plenty of times when I clean up messes that I did not make for the sake of our shared environment. It's part of being a member of a family or community. (Plus, I don't want my daughter to grow up to be one of those people who leaves their shopping cart in the middle of the parking lot. It goes in the corral people, in the corral!! But I digress...) I try to be mindful of what kinds of responsibilities I give my daughter by intentionally assessing if it's something I can do myself or if I genuinely need her to pitch in. There's a fine line between teaching her that families work together and taking advantage of her being able to help. Just because she can doesn't mean she always should.
Connect them with support services. Witnessing the struggles and challenges faced by their special needs sibling can lead typically developing children to experience complex emotions, such as sadness, frustration, embarassment, pity, empathy, and sometimes a sense of helplessness. It's important for our typically-developing children to know that they are not alone in their feelings and experiences and that there are other famililies out there that look the same as theirs does. Parents are so overwhelmed by simply surviving the day to day that sometimes the feelings their typical child is experiencing get overlooked or put into the "deal with this later" category. This is where support groups, counseling or family resource groups for your special needs child's specific condition come in to save the day. A quick Internet search can give you some helpful leads for the kinds of resources available in your area. Special Siblings is an organization local to Raleigh, NC that aims to provide support for siblings of children with special needs. Each meeting features circle support - a time where siblings can share their personal struggles in a supportive and constructive group setting surrounded by others who get it. Adam's Camp is another resource that offers Sibling Camp to provide the opportunity for typically developing siblings to interact with others who walk a similar path and have a level of understanding that some people do not. In addition to sibling support groups and camps, many trained therapists can work with your child to help them process their feelings and experiences. Ask your child's pediatrican for local recommendations.
Putting it All Together
While this certainly is not an exhaustive list, it's a good place to start. Every family features an intricate tapestry of members, each bringing their own unique gifts and challenges to the table. The journey is shared by all, including the typically developing siblings who navigate their own path alongside their parents and sibling with special needs. As parents, caregivers, and guardians, it is our profound responsibility to ensure that these beautiful souls receive the support, understanding, and recognition they need. By fostering open communication, providing opportunities for personal growth and stress-free fun, and cultivating an environment where their emotions are validated, we can empower our typically-devloping children to not only embrace the challenges they face, but also thrive despite them. Through patience, empathy, a commitment to nurturing their unique journey, and of course, love, we can help them grow into compassionate, resilient individuals who parlay their childhood struggles into a deep strength that will serve them well on their journey to adulthood and beyond.
This blog is dedicated to my Nora Valentina--a beauty inside and out. I love you more than words.