When raising children in general, much more in the case of raising children with disabilities, it seems like balance is not a part of the equation. Our communities have highly normalized the lack of balance and personal boundaries.
For example, we mothers claim pride in erasing our personal needs to become superheroes. Instead of challenging the system to get the support our children with disabilities are entitled to, we take pride in condescending posts and publications that sell us as multitaskers that need to become nurses, doctors, therapists, teachers, and much more due to the lack of services.
With all those societal imposed responsibilities and supported by our own stigmas, how can a human being find balance and, therefore, maintain a healthy state of mind? I am not trying to sell myself as the best example of balance or self-regulation but as someone who has been there and has learned that there is no way to sustain this fantasy.
I want other mothers to avoid falling in this tramp due to the absurd expectations imposed by society when they praise sacrifice while becoming accomplices of the systems that keep denying people with disabilities of support and services they need and deserve as established by law.
As parents, the change begins in ourselves. We need to make peace with the fact that the challenges that come along with disabilities are not blessings or lucky charms. They are complex, requiring a lot of effort, planning, and support systems. Our children are a blessing with no doubt, but the only way to celebrate that blessing is to accept and ask for help as we are not any therapists, doctors, nurses, or teachers. We are just and only parents, and when we try to play other roles, our role as parents will be affected.
Disability is not optional. We don’t choose to live with a disability or to have a child with a disability. We have to overcome the negative feelings surrounding this natural experience to feel comfortable and proud of supporting our children’s rights to living to the maximum extent of their abilities.
There is no shame in asking for equity. Supporting disability movements supports society from the perspective that disability is natural, and we all will experience it to some degree as a part of natural human existence. Disability comes with aging, through direct and indirect experiences and often through the unexpected. Having systems in place protects all of us and the ones we love.
The more established and efficient the disability systems are, the more productive people with disability have the opportunity to become. It’s not about gifting anything to anyone but ensuring equity so everyone can have access to equal opportunities that allow becoming the best versions of themselves. We all grow together as a society.
Without this deep understanding, finding balance is impossible and can neither be done in isolation nor segregation.
Hopefully, our children will live long lives. As parents, finding balance is the only way to ensure we will be with them as long as possible. If you are a part of a support group, learn more about advocacy. Bring policies and ideas on how to raise your voices to make systemic changes that improve our children’s lives.
Don’t get lost in the idea that you are sufficient and can pay for your child’s needs; therefore, everyone else should do the same. This movement is not about the things we can pay but about all the things that money cannot buy and happen due to mental evolution. These are independence as a result of education along with dignity, inclusion, and equity.
Then and only then, when systems are in place, and children receive what they need and deserve, parents can play their role to advocate, support, and make their kids happy and complete.
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