Parenting Kids with Disabilities after Divorce
I have a child with a disability.
It is something he was born with, and he will deal with it for the rest of his life. It means he struggles mightily with communicating effectively and requires some support pretty much in every aspect of his life involving needing to tell someone what he wants, needs, to share any information verbally, or ask a question.
It also means he needs parents who advocate for him, support him endlessly in finding ways to “work around” his communication challenges, and to ensure he has the help he needs. He needs those those things in his life consistently and delivered with compassion and understanding. It means he needs acceptance and reassurance when kids don’t have the patience to figure out what he is trying to say…or worse. They realize he struggles and torture him for it.
To say he has endured some tough spots in his young life would be an understatement. I remember that when I feel overwhelmed or frustrated or worried about whether he is going to be OK. If kids are going to be mean to him today. If his teachers are going to take the time to help him when he struggles. If another kid is going to hit him in the head with a stick at recess while everyone watches–teachers included–and no one does a thing but stand there staring at a little boy who is sobbing in pain–physical and emotional–but not caring to help. (Yes, that happened.)
This is the situation for many children with disabilities, and it adds a whole new realm to parenting.
Kids with large challenges need intervention, and for many of us, that intervention started when they were tiny and continues. It means making time daily to develop and practice whatever the therapist said needed to happen. Every regular part of life at home includes some kind of opportunity to practice, encourage, and love regardless of how scary or frustrating it is to watch your baby struggle and suffer as a result.
Parenting a child with a disability is also a wonderful gift because quite often people who cope with having a perceived disadvantage tend to grow into adults who are wildly gifted in an area they develop in order to find a way around their challenges. In my experience, sometimes this just naturally happens, but most often it results from parents who have encouraged and supported their kids, consistently sending the message that their child is loved and capable of overcoming anything.
For single parents, getting on the same page is paramount. All kids need consistency, but most kids with disabilities require it. They need their world to be structured in ways that support their thinking, foster positive interactions, and build them up. Keeping those elements of their life consistent in one house is work, but try two! Co-parenting is always important when it comes to kids, but when your child requires significant interventions to function successfully and happily, the communication and expectations really have to look the same.
As new people come into kids’ lives naturally as their single parents move on with their lives, sometimes it’s difficult to explain the challenges and how we manage or redirect them. With my son, we have to ask a lot of specific questions, and we have to wait patiently to get complete information. Or incomplete information! And sometimes members of his blended family don’t understand or show him much compassion. As he is getting older, we have more to think about as the college years approach, and that requires us to put aside our personal feelings to ensure we are supporting our son.
There is no way we could have parented him to this age otherwise. We have been furious with each other but sat side by side, completely unified in advocating for his needs. We have to sit down and talk about other issues as the come up like additional therapy and how we should pay for it. We understand that our child needs us to do all of the things we would have done for him if we were still married. We have to make sure we understand his progress and where he needs more help. We have to ensure he understands his challenges and takes ownership of how he will move forward throughout his life.
I am very lucky to have an ex-spouse who works with me and not against me. Plenty of examples exist out there of an alternative I don’t want to experience. And still I often feel incredibly isolated in parenting my son. It’s devastating to see him struggle with simple things. It’s heart-breaking to see him get so frustrated with himself when he can’t say what he wants or needs and feels defeated. There isn’t always a go-to person to think out loud, bounce an idea off of, or get feedback from. It’s a lie awake at night second guessing what is the right thing to do. When we see the differences, it can be alienating. When I see the uniqueness, it is encouraging because I can attribute so many of my child’s gifts to his ways of coping with challenges.
The outlook for my son is incredibly bright. He has endless opportunities ahead of him. He will run into challenges resulting from his disability, and he will encounter uncompassionate people. But he will also be a walking inspiration to others and a person who is loved by those who get to know him.
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