One of a Kind...Maybe

Adaptive Parenting and Achieving Success

What is adaptive parenting? Adaptive parenting is a flexible way of parenting that fully meets their child's' constantly changing needs.

It's not easy....

But it's not hard either...

When your child is born with a disability or a disease, or even develops one later on in their childhood, it turns your life upside down. It's an emotional rollercoaster, it's overwhelming, but most of all, it makes parents feel extremely helpless. The question is, what can you do?

Reach out

There is no such thing as weakness when it comes to asking for help. Find support groups on social media. Parenting groups can be the most helpful when coming to understand your child's disability or diagnosis. There is nothing more valuable than the advice from other parents who once wore the shoes you have now obtained. The Children’s Hospital of Philadelphia found that social media groups significantly improved parenting knowledge and decreased the severity of depression in parents. Parents are more likely to attend virtual events and share experiences through social media platforms rather than in-person groups that can, quite frankly, be hard to find. You would be surprised at what that search bar on your social media platform can find to help you find support groups because trust me, you are not alone in this. 

Finding Acceptance

Acceptance is the hardest part of any diagnosis. Probably one of the most popular questions of doubt is "Why my child?" There is no definitive answer to that question. The only true answer is acceptance. Accept your child for who they are and not what they have been diagnosed with. Accept the fact that some days might be more difficult than others. Most importantly, accept change. A lot easier said than done...right? There are many people out there to help parents accept this change that now invades their lives. Parental depression is much more common in parents of a child with a disability, and if unrecognized or even untreated, it can have devastating impacts on the child and the family itself. According to the Children's Hospital of Philadelphia, stressors are significantly high in these parents. Financial situations, child behaviors, and lack of sleep play a role in the mental well-being of the parents.

Research

Research is extremely important in order to understand your child's disability and diagnosis. Research doesn't always have to be reading articles from scientists and medical doctors that have never parented a child with the diagnosis (although it is helpful for understanding the underlying science), but you can find blogs from parents, support groups sharing their own experiences, and advocate groups that all have experience. The more knowledge you have about your child and their condition, the easier it is to advocate for them in the future--especially with difficult doctors (and believe me, I have met my fair share).

Advocate

Advocating for your child is the number one reason for all the research and outreach, especially if the child is nonverbal. My daughter is nonverbal and 100% physically dependent on me to make decisions that dictate her quality of life. Over the years, I have gained so much knowledge from parents and research of my own so that I can determine the best treatment plan and lifestyle choices that will benefit her the most. You are your child's voice. Sing it, and sing it loud.

Sacrifice

Having a child with a disability takes a lot of sacrifice, but that doesn't mean that parents have to give up everything. You are the one that has to identify your physical, social, and mental needs. Don't ever be afraid to ask for help, whether it should be for an hour or a night. Physically, exercise is a great way to help with mental clarity and keep you physically healthy. Socially, it's important for you to surround yourself with people that understand you and your lifestyle. Finding things that help with your physical and social needs can help your mental state. This can be painting (I recently found that paint-by-numbers is very satisfying and calming), going for a walk or hike, music, book clubs, trivia nights, or even enjoying small community outings. Having a child that takes a lot of attention and caring takes sacrifice, but it doesn't mean that you have to sacrifice your well-being. Think about the question: if you can't be the best for yourself, how can you be the best for your child?

Moving Forward

Adapting parenting takes time, patience, and consistency. Grasping constant change doesn't come overnight. It comes with time and with that, comes patience. I was not the most patient person before Anya's disability, but it was a skill learned very quickly when I found that without it, it just made things much more difficult. There are going to be really good days, okay days, and straight-up horrible days, but take a step back, breathe, and remember one thing...your child loves you and depends on you. Have a daily schedule, set a routine early, and stick to it. Over time, it feels just like breathing.

Make sure to stay up to date with medical research, follow organizations online, find support, and take each day one step at a time. You can do this even if doubt settles into your mind, always remember that somewhere out there, someone is going through the same thing as you.

Citations

Jackson, Stefanie. “Depression in Parents of Children with Developmental Disabilities: What Do We Know and What Can We Do?” Depression in Parents of Children With Developmental Disabilities: What Do We Know and What Can We Do?, Children’s Hospital of Philadelphia, 2 Nov. 2018, policylab.chop.edu/blog/depression-parents-children-developmental-disabilities-what-do-we-know-and-what-can-we-do.

“Utilizing Social Media to Support Depressed Parents and Caregivers.” Utilizing Social Media to Support Depressed Parents and Caregivers, Children’s Hospital of Philadelphia, Feb. 2023, policylab.chop.edu/project/utilizing-social-media-support-depressed-parents-and-caregivers.