I try to stay positive about my daughter’s disability. I also try to stay positive about acceptance. Knowing that it is possible for others to accept my daughter’s differences. It seems like I always have other things that don’t go smoothly in my life. This makes it difficult to always stay positive. I try my best.
But there's also a side to me—and other parents who have children with disabilities—that we don't like to talk about. We don't like to talk about it because it shows our wonderful children at their worst. It’s the side we only share with our closest friends, who understand because they have a similar child.
We also don't want to talk about it because it does very little to bring about acceptance of others for our child. But sometimes we must vent just like everyone else. And we must be able to do it without the threat of society not accepting our children. Differences need to be looked at as just that. It is OK to be different.
Our children have many dark moments. In these times, they may have self-injurious behavior, lash out at family members, or have tantrums in public. They may smear feces or break things. They can be very challenging to deal with.
Most of the time, we don't or can’t understand these behaviors. Our children can be in survival mode because of sensory overload. It may be their inability to understand a request. They may be unable to express themselves and their own frustrations.
Many of us spend countless hours trying to find strategies and therapies to help our children to cope better. Meanwhile, we are being hit, bitten, screamed at, and having to clean up nasty messes. Yet, as hard as days can be, the only thought we can think is how much harder it is for our child.
Behavior is communication but sometimes we just can’t understand what they are trying to say. As a parent, this is extremely sad and frustrating.
Sometimes, even our special tricks fail. We do all we can and still have many rough and very challenging days. Even when our children sleep well, we can’t (for obvious reasons).
We adjust and accept our life. We accept our children for who they are. But changes really need to be made. Society needs to learn to embrace differences. Our children need to feel like their peers and not be bullied or shunned.
Hopefully, as we continue to push for acceptance, more people will learn that our kids are kids first and differences are a part of everyone’s life.
Here are some strategies to help when people misunderstand your child’s behavior.
As parents, the work of assuring our child feels safe, secure, and valued at home, school, and in the community is challenging and full of risks. In Sandra Kaufmann’s book, she shares relatable ordeals and hard decisions their family had to make for their daughter with disabilities.
Categories: Family Support
I have learned that not everyone is capable of providing emotional support to parents of children with disabilities. There is limited help available with the day-to-day struggles associated with managing time, appointments, and responsibilities.
Categories: Family Support