Divorcing parents are usually concerned about the emotional toll that their divorce may have on their children. This worry can go up exponentially when a special needs child is involved, a situation that we encounter not infrequently in the family law world. Studies indicate the divorce rate for parents of disabled children is approximately 80 percent.
At Kales & Kales, we’re particularly concerned about protecting these children, as the issue of raising a special needs child is a personal one for us. Our son, Jack, had a brain injury at birth, and we are, therefore, intimately familiar with the stresses and strains having a special needs child can have on a family. We are also highly aware of the need for effective co-parenting of special needs children, and believe, for those couples with special needs kids, who do divorce, that a process that supports co-parenting well is essential.
Collaborative Divorce, we think, is the best such process. A few examples of why:
• A team of professionals is assembled to address the unique needs of the divorcing couple, their special needs child(ren), and their “typical” child(ren). The couple, depending on the particular facts and circumstances of their case, may have on their collaborative team, not just their attorneys, but also financial experts, child specialists, and/or coaches.
• Rather than the child “custody and visitation” battles you hear about in many traditional divorces, Collaborative Divorce emphasizes helping parents develop co-parenting plans, road-maps which take into consideration the unique needs of special needs children and their “typical” siblings.
• With regard to finances, instead of spouses battling one another over finances in a courtroom, a financial expert can be used to assess a special needs child’s present requirements and how to pay for them, as well as to assesses that child’s future needs and to develop a plan for paying for those costs.
If you’re interested in reading more about Jack’s story, Amy Kales recently gave a fantastically well received talk at Reelabilities: DC Disabilities Film Festival about raising a special needs child. Here’s the text:
“Thank you all for coming to this important program. It is so nice to see such a great turnout. My name is Amy. I have three children, Jackson, Noah and Lily. My oldest son, Jack as we call him, suffered a birth injury which resulted in significant cognitive deficits, some weak gross and fine motor skills and some social and behavioral issues as well, so when it comes to special needs, we pretty much run the gamut.
When Andy first asked me to speak at today’s film festival about my experiences being the mother of a child with special needs my mind began to race. There are so many things I could say. So many things that I want to say, so many things that I want to put out there.
I thought about speaking about how at the moment you realize your child has a disability you begin what I think can best be described as a grieving process.
• You grieve the typical child you have lost. Generally, when you find out you’re expecting a baby or when you hold a newborn– your newborn– the world is full of possibility— You look at a sonogram picture or look into the squinting eyes of your brand new baby and you think “who are you little one?” Maybe someday you will be a doctor or a lawyer; Maybe you will one day cure cancer. Maybe you’ll be an artist—a poet or a dancer. The world is yours. But the instant you find out your child has a disability, whether that be when your child is still in utero or shortly after his birth, as was my situation, or when your child is two years old—whenever that moment occurs, your previously held dreams begin to crumble. Suddenly you enter survival mode and your dreams become much much more simple. I hope my child will walk one day. I dream that my child will speak one day. I pray my child will be able to make a friend. The grief for the child and the dreams you lost is real and it is unrelenting.
I thought also about speaking about the loneliness, isolation and heartbreak that often go hand in hand with being a child with a disability and being the parent of that child.
• Often when I watch my son clap compulsively or say inappropriate things or ask a question for the 25thtime in two hours, I think about what his life will be as he grows and becomes more independent. I fear bullies and their cruelty. The need to protect Jack from the cold hard world is almost primal. I will protect him, I have often thought. I will take care of him. I won’t let him be hurt. But I know I can’t do that forever. I won’t be here forever. And the thought of that is simply terrifying.
• Once I get past fear, though, there is another emotion lurking beneath the surface and it is as difficult to experience as fear. It is sadness. My son is ten years old and not since he was a toddler has he been invited on a play date at the home of a typical child. Not since he was 3 has he been invited, on his own, to the birthday party of one of his neurotypical classmates. He is often invited to tag along with his brother on play dates or to birthday parties and he has a group of children with disabilities who he counts as his friends. I have friends that include him in family gatherings and my husband’s and my family certainly welcome him. He is not entirely alone—yet, the fact remains that a huge percentage of the population doesn’t see him. They don’t get past the stemming. They don’t take the time to wait for him to answer a question. Their face grimaces slightly when they attempt to talk to him and realize that he isn’t your average ten year old. They don’t know about his sense of humor, they know nothing about his love of baseball or how he takes tae kwon do or that he loves music. A huge percentage of the population pretends he doesn’t exist. Looks the other way, just as the woman at the bus stop did in the film we just saw about Down Syndrome. My son’s presence makes some people uncomfortable. Visibly and clearly uncomfortable. If I am to speak honestly, I will confess that before I had Jack, I was guilty of this. I don’t believe I ever took time and stopped to really see the disabled young man who bags my groceries, wheelchair bound children or adults that passed me at the mall weren’t on my radar screen, I often looked at inconsolable tantruming children with impatience—and boy did I judge their parents. I thought they were incapable “I will do such a better job parenting and my kids will never act like that.” I used to think that. I don’t judge any parent or child anymore. Not anymore. Never again.
I thought about speaking about my worry about what will happen as Jack ages. And what will happen as his siblings grow and potentially move away. Will he have a life of his own? I think about how my husband, Jonathan, and I currently have an estate plan that includes “living forever” because we don’t know who would be willing and able to accept the challenge and stress of caring for him in the event we aren’t here to do it.
I thought about talking about the impact my son, Jack, has on the rest of our family.
• My husband and I are divorce attorneys by profession. If fifty percent of marriages end in divorce –Some studies have shown that the number rises to between 80 and 90 percent of marriages which include a child with special needs. As I walk the walk of having a disabled child, I see why this might be the case. Raising a child with significant needs is exhausting. It can be emotionally, financially, physically and intellectually draining. Sometimes at the end of the day, my husband and I look at each other and realize we just have nothing more to give. Sometimes our tanks are so empty it takes everything we have just to say goodnight to each other. Sometimes our anger and frustration about our situation—Jack’s situation– directs itself inappropriately toward the other. Compounding the issue is that it is difficult to find respite because of the challenges involved in caring for our son. There is precious little time to ourselves. Precious little time to remember that before we were Jack’s parents, we were carefree.
• As the mother of two children without special needs, I feel a huge sense of guilt for the energy it takes to parent their sibling. I notice how they have learned to clear the room or busy themselves with a toy when Jack has a breakdown and their father and I attempt to address the problem. I know they each feel a sense of responsibility to their brother and although I think that is amazing to watch, I think about what a burden that is to them. Being the sibling to a special needs child is not easy. It changes who you are. It places firmly upon your shoulders the heaviness of responsibility and worry before you are old enough to comprehend what those are.
So I had all these thoughts about what to speak about. And then as I reviewed them in my mind I realized that everything I thought to speak about involved the difficult aspects of being the parent of a special needs child—There is grief, there is fear, sadness, worry, exhaustion. There is conflict and there is difficulty. And although these things are all real and important and worth speaking about—they really are only part of the story. Not even the most important part of the story. Being the parent of a special needs child is also an amazing privilege which no doubt has enriched my life and it has enriched the lives of our entire family.
• Being Jack’s mom has allowed me to gain, suddenly and quickly, something that I didn’t have before and something that, in my humble opinion, an alarming percentage of the population lacks—perspective. Suddenly I am able to evaluate the importance of things at a rapid clip. Suddenly whether my children have any athletic talent or make it into the Ivy League matters not at all. What matters is that my children are able to find happiness. What matters is that they have friends. That they have a life that fulfills them. The details suddenly became unimportant.
• Being Jack’s mom has made me realize that you should never ever allow anyone to set limits for you. Doctors told us initially that Jack would never walk or talk or feed himself. Jack didn’t know that this was his prognosis and he has achieved every one of those milestones and then some. He works so hard to perform the tasks so many of us take for granted. Every time I worry that Jack has reached a plateau in his development, he moves upward. I have had the absolute pleasure of watching Jack learn and grow and prove his naysayers wrong. He is the epitome of determination and strength. He is an inspiration.
• Being Jack’s mom makes me remember to SLOW down and celebrate the small moments. In the rushed world we live in, it is easy to concentrate so hard on getting to our destination that we forget that life is really about the journey. You can’t rush Jack. You can’t get him out of the house quickly, can’t force your sense of time on him. He does things on his own timetable. At age 2, he could only say one word. At age 3, he probably had close to 50 words. By 4, he had so many words we couldn’t count them. Now as I watch Jack learn to read—albeit at a very slow pace—I realize how much we should celebrate these small milestones and victories. What is life, really, but a series of steps—some big and some small? All are worthy of being celebrated.
• Being Jack’s mom has allowed me to find the most incredible network of women who also parent special children. Women who have become my mommy soul mates. There are some people who just get it and had I not had Jack, I might not have forged such strong friendships with these truly amazing people. For them, I am thankful beyond words.
• Although I spoke earlier of how parenting a special needs child can weaken a marriage and how difficult it can be to have a sibling with special needs, I think the opposite can also hold true. My neurotypical children are compassionate. They see people with special needs. I mean, really truly see them. They are kind. They are not frightened by disabilities. They may be curious, but they understand. And as I watch my husband parent Jack, I fall in love with him over and over again. He has the patience of Job. He is strongly gentle. And gently strong.
So in the end, I suppose the message I want to leave you with tonight is that although being the parent of a child with special needs is extraordinarily difficult and at times can be heartbreaking, being the mother of a special needs child has also enriched my life beyond measure. I believe there is a reason this amazing little boy entered my life. I will be forever thankful our souls found each other. “