Parenting is challenging, but parenting a child with special needs brings the experience to a whole new level that no one can really understand until they live it.
From one day to the next, parents with special needs children can never really predict what the next day will bring. Will it require another trip to the doctor for another unforeseen and confusing medical issue? Will a certain behavior become so unmanageable that it impedes the ability for the child to get to school that day? Will you be on the phone with the school again for another challenging issue to sort through?
Even with all the challenges our special needs children present, we love and care about them deeply, but how do we as parents keep a positive outlook and not succumb to burning out?
1) Build thicker skin to deal with the judgments.
Most parents raising children who have varying significant challenges have experienced hurtful judgments from all over – including from family, friends, staff members at your child’s school, and complete strangers. We may find ourselves “over explaining” the conditions of our child with the efforts to help them understand the totality of the complexities. After all, each child is unique and it’s important to educate others around us as to what’s going on, so greater understanding and support can be provided. However, most people lack the ability to understand the totality of the issues and can’t begin to comprehend it until they experience it for themselves. This leads to the judgement from others (even from the very well-intentioned). It’s beyond frustrating to experience, which can unfortunately occur quite frequently. We as parents must build thicker skin to deal with this.
2) Balancing ability to validate, empathize and yet, be firm – employ “tough love.”
It’s imperative that we as parents put ourselves in our special needs children’s shoes, and remind ourselves just how hard their lives are. The reality is, each and every day is a struggle for them. Although we know it’s important not to feed into negativity or promote enabling behaviors, the simplicity of validating their experiences, plus efforts to understand them goes a long way. Acknowledging their challenges, empathizing, yet engaging in tough love to help build their resiliency is all very difficult to balance.
For those of us in the thick of it, we know there is an art to it. Communicating our intentions (based on their ability to cognitively take it in) is important. Our kids may think we’re being “mean” when we push them. Remember to keep the communication line open. Listen to their perspectives, find common ground where you can agree on (validating / empathizing), yet stand your ground to keep helping them grow (which involves tough love).
Remember to include ways to help them re-frame their experiences, find positives and build upon their strengths wherever possible. For example, their challenges often make them more compassionate toward others. That is an attribute to be proud of. Re-visiting the art of balancing these factors helps make progress, which in return, can help us as parents stay hopeful for positive outcomes.
3) Encourage your child to build a network of relationships/resources wherever possible.
It’s not uncommon for children with special needs to feel highly dependent on their parents. After all, the parents are their primary caretakers. But, for the sake of your child having the ability to survive in this world, they need to learn how to advocate for themselves and learn how to utilize a support system outside us. An added benefit is that we as parents feel more supported as well. It really does take a village to raise kids, especially those with special needs.
If you’re not already doing this, a key aspect to achieve is to help foster a “contact person” that your child connects well with at your child’s school, after school activity, or wherever else that your child is engaged. That person may not totally understand all the challenges, but a genuinely caring adult who tries is half the battle. Your child being able to go to that adult for help and support is a skill that they can carry forward within life.
Also, when engaging with an entity, such as the school, remember to employ a “strength-based approach.” In addition to explaining the issues and complexities of our child, if the school doesn’t solicit feedback for your child’s strengths, it’s important to be certain to share with the school your child’s strengths and how to build on those strengths.
4) Recognize yourself as a key expert in the care of your child/importance of staying organized.
Doctors, therapists, varying specialists are all very important and of course deserve the utmost respect. However, in most cases, they work in silos. They are experts in one particular area. The complexity of special needs kids is that they require MANY different experts. And, even with these experts and the advancement with medicine and various therapies, there continues to be many unanswered questions for complex kids.
As parents, we end up becoming the “general manager” -- overseeing the overall treatment of our children while trying to connect the dots, and often must think outside of the box. What works for one may not work for another. Although this can be hugely stressful, once we embrace the reality that we are a true key expert in this process, the “take charge” approach can really help get things done, which inevitably can help make progress.
In the midst of overseeing our child’s health and overall well-being, keeping ALL of your child’s records organized is essential – ideally, digitally organized in the cloud where you can access it from anywhere. Finding what you need instantaneously can help alleviate some of the stressors that come with caring for kids with special needs.
5) Make your own well-being a priority (and this goes for each member of the family).
We all know how critically important this is, but it’s often neglected. When raising a special needs child, it truly becomes a family affair. Therefore, each member needs to get their needs met too. As parents, we must calendar ourselves in for the doctor appointments, some quiet time, exercise and time to connect with the other special people in our lives. Getting our emotional/social needs met provides fuel to stay strong.
A terrific aspect to consider is finding some sort of support group or circle of other parents who are in the same boat. In addition to this providing a great source of support, it’s helpful to brainstorm about various treatment modalities and share resources we didn’t know existed.
There is also a time and place where “distraction” can help us replenish. Reading a book, watching a TV show, engaging in something you’re passionate about – these are all great things to do.
A daily habit which also helps with well-being is to appreciate the milestones and achievements that are made. And, of course we should try to appreciate the positive moments mixed in with the day, along with your child’s beauty and strengths that shine through, even when there are setbacks.
Follow the 3 G’s
As progress gets made, we’ve been around the block enough to know that set-backs will continue. This is the perfect time to follow the 3 G’s.
1) Get informed: By now, many of us go into auto pilot without the emotions. Get the information you need to move forward. It’s also helpful to review what’s working and what’s not in terms of the varying treatments for your child.
2) Get Organized: The simplicity of staying organized helps on so many levels. The information we need organized and accessible for special needs kids tends to be enormous. As mentioned earlier, doctors’ offices mostly work in silos. Most offer “Patient Portals,” but they are not typically connected to each other. We can drive ourselves crazy having to enter each and every system to access what we need. Getting a physical copy of all relevant reports to keep in one comprehensive system is essential to be your best own advocate. Taking it a step further, scanning that info into the cloud within an organized infrastructure (such as, www.digitallifecloud.com) allows you to access the information 24/7 from anywhere and find it within a moment’s notice.
3) Get Going: An initial step that is helpful for many is putting it into the calendar. Literally writing or typing in “call Dr. Smith” or “send guidance counselor update” into the calendar gets the ball rolling when you feel like you don’t want to do one more thing. And as we do this, we must remember to calendar things for ourselves so we don’t burn out. Somehow, someway, we need to make this equally important. Our children and we personally will be better off for it.
***Also contributing to this article, Lynn Benson, MSW.
Lynn Benson, MSW, provides the organizational vision for Digital LifeCloud and led the website team in creating this breakthrough multi-generational information management system. Her extensive background and education providing first hand guidance and assistance to families, children and the elderly, gives Lynn the unique ability to create a system that is efficient for use in both emergency situations and day-to-day family management.
Lynn earned a Master’s Degree in Social Work and carries a diverse and exceptional background. Lynn began her career as Director of Operations for a national multi-unit childcare and elder day care company overseeing numerous facilities throughout California. Lynn co-developed, launched and maintained innovative curriculum for Intergenerational Day Care Programs serving both children and seniors.
As a social worker, Lynn learned first hand the plight of the elderly who could not endure without outside assistance and Lynn became their advocate, providing the help, organization and facilitated services they needed day-to-day to endure and to survive crisis.
Utilizing her unique background providing intergenerational care and advocacy as a social worker, Lynn co-authored the BioBinder™ series to create products that are well organized, easy-to-use, and which enhance one’s quality of life. Lynn has co-authored Cherished Memories - The Story of My Life, The Senior Organizer and the Chicken Soup for the Soul book, Life Lessons for Busy Moms – 7 Essential Ingredients to Organize and Balance Your World.