The above image is of 3 children standing in the wake of waves, 2 of them holding their shorts up, as 1 looks straight out at the ocean, one looks down at the waves, and the other looks to the right.
I come at this from the perspective of a parent, but also as a professional in the field of disability, I can see how easy it can be to make assumptions on a parent’s decision or comment about their child. As a parent and as a professional, I call on you to respect a parent’s expertise as it relates to their own child. I think it is important to always step back and try to understand why a parent may be feeling the way they are. Consider coming in with a positive attitude and one that emphasizes the importance of a parent's concerns and questions. A parent is there for every moment, the good moments, but also the hard, the long nights, the broken hearts, the pain, the tears, the missed opportunities. They are there when their child does not understand why something they love is being taken away because there wasn’t an accommodation that could be made that didn’t violate their human rights. Let’s not be so quick to advocate for their human rights if the right itself may take away something a person loves.
It is not easy to understand how a disability can affect the daily life of any one person or their family. We are all very diverse. We can understand what accommodations can be given to support a person or family, but we all experience life at our own 100% and it looks different for everyone. As I mentioned I’m a professional in the field, a family support specialist for the Air Force, but I "live" the perspective of that as a mother of children with disabilities. I’m speaking on behalf of all parents of children with neuro-developmental disabilities. The perspective that keeps me up at night. The perspective that makes me question whether I’m getting it right. I want the world for my children and I know their disabilities make life hard right now. I want to provide experiences that teach them to advocate for the things they need and to see that there are no limits to what they can achieve. The ocean has always been a place for me to be reminded about endless possibilities in a world that is excitingly chaotic yet stabile and peaceful. Recently I had a chance to take my kids to see the ocean for the first time since they were little. I love that they found the same fascination for all the ocean can symbolize about life.
“The ocean is the beginning of life on Earth, and symbolizes formlessness, the unfathomable, and chaos. The ocean can also be seen as a symbol of stability, as it can exist largely unchanged for centuries. The ocean is considered to be boundless, a place where one can easily be lost, and can
therefore be seen to represent the boundless span of life, and the way one can get lost on the journey through life.”
There isn't a day that I don't think of my daughter's future. She was diagnosed with Fetal Alcohol Spectrum Disorder (FASD). The challenges she faces everyday are directly related to the decisions someone made. It wasn't a tragic car accident or some other unforeseen tragedy. It was a decision to consume drugs and alcohol during pregnancy. She's a beautiful girl, inside and out. She has so much to offer. In our case, her biological mother was also faced with situations that were a result of parents that were making poor decisions. She too was in foster care.
Trust me, as a parent of children with disabilities regardless of their age, when they find natural opportunities to be a part of something that interests them, the last thing we want to do is be in the way. If it's unsafe, then it's my responsibility to intervene and help find ways to make it safe. How we choose to intervene as parents is very important. If we make an irrevocable decision too soon, we could have regrets. What parent doesn't make decisions that might have been driven by emotion, fear, or exhaustion? A parent recently reminded me of a saying, “You’re only as happy as your saddest child.”
As parents, we know our child's potential long before a medical provider makes a diagnosis. Most parents long to fully understand it. This is where we need expertise. We long to understand their diagnosis so that we can help our children make their own decisions. Parents need someone to take the time to help them fully comprehend how we keep our children safe and ensure the safety of those around them while giving them the full entitlement to their human rights. We want to understand even if we are not asking for it.
As parents of children with neuro-developmental disabilities, we want what all parents want. We want our children to live their best life. We know our children well and need the "professionals" on our team to respect our expertise. Sometimes, we all need to be reminded or informed of research and resources to help make informed decisions that support our children while affording them of the rights they are very much entitled. We need to be careful. We need to avoid jumping to conclusions that parents are ableists. Let's not be so quick to make that accusation because that too is ableism. Ableism can also be, medical experts or professionals jumping to conclusions about a parent’s intentions based on limited information. Sometimes parents don’t come forward because of a fear of asking for help, asking for help and never getting it, or they may feel like they don’t need help.
This makes me think of a family that spends a lot of time at water parks. She carries her 12-year-old daughter up 5 flights of stairs so that she can join the entire family. She looks at me with tears in her eyes and says, “I hate that this might be her last time ever going down a slide. I can’t carry her safely to the top if she gets much bigger.” You see, a parent’s desire for a child to stay small isn’t always about what makes things easier for them. It’s what opportunities will be taken from their child when they can no longer be safely carried up 5 flights of stairs to go down a water slide with their family.”
When I sit with my fellow parents, we all have different stories, but do you know one common experience most of us have? Most of us will tell you we had to fight to be heard and understood. We advocate because we love. We love deeper than most professionals will ever understand. Our requests come from desperation to protect our children from harm and embrace the opportunities for them to live their best life. Their long term happiness is at the forefront of what we hope for their future.
I use those experiences to advocate for the importance of hearing and acting on the voices of parents and individuals with disabilities. We need to teach self and family advocacy as early as possible so that they know how to ask for the right support, treatment, or accommodations.
Let's embrace diversity by getting to know one another and educating one another to avoid ableism and respect the rights of all individuals, especially as it relates to parental identity. Whether professionals want to admit it or not, parents are the experts on their child and we all should respect them for that. Listen, respect, and educate parents, when needed, in their role of expert on their child.
Last, thank you to those of you that do listen, encourage, and respect parents. Thank you for taking the time to educate about research, resources, and support. I don’t mean to imply you don't. We see you; we thank you and appreciate far more than you know. Unfortunately, when we must speak up, we can't always point those out and still feel as if we are heard.
Reference http://websites.umich.edu/~umfandsf/symbolismproject/symbolism.html/O/ocean.html
