Make Your Own Rules

Having a Special Needs child comes with its own set of difficulties. There is no rule book for how to raise a child with disabilities. Books about reaching children’s milestones do not apply to your child’s specific special needs.

Even learning about your child’s diagnosis does not help prepare you, because every disability is so different. For instance, Ciara has Cerebral Palsy and cannot walk or talk, but there are others with CP that can walk and talk normally. So finding the right information or help, can be exhausting.

I have learned that we have to make our own parenting rules and go by our own knowledge.

After 21 years, I am still learning about Ciara. I am still trying to figure out what I am doing and questioning if I am doing the right things for her.

I thought I had everything figured out and then..she became an adult! I thought getting her through school and puberty was my most difficult challenges. I was wrong. Now, I am learning how to transition her into adulthood and prepare a future for her. I feel as if her whole future depends on the decisions I make now for her.

There is no manual to tell us what to do to prepare our kids for the future, so we have to what we feel is best for our children.

On top of all the stress of raising a special needs child, there is always judgment and pressure coming from professionals. “What are you doing for her future?” “What is your next step?” The questions never stop coming! Seriously, I don’t know what I am doing with my life, then I have to tell them exact plans for my daughters future!

People never stop judging, you just have to get past all the questions and realize you are doing whats best for your child. People can make you feel like you are not doing enough for your child, but you are. You cannot completely exhaust yourself trying to be perfect, you just have to do what you can do.

There was a point in my life where I let Ciara’s disability control my whole life. Everything I did in my life was directed towards Ciara. I was was consumed in therapy appointments, Doctor appointments, special needs conferences, and lots of research.

I still do what needs to be done for her, I just don’t let it consume me. We have a life outside of her disability and we also have a nice balance of special needs activities. I feel she is happier now that I am not obsessed with her disability. She is not reminded constantly of her disability and it helps her to feel more normal.

People may judge me that I don’t have her in tons of therapies and Doctor appointments to consume our weeks, but I make the rules and do what is best for my family.

She still sees her Doctors when she needs to and I am still working on preparing for her future, but we are going to enjoy life in the process.

Make your own rules for your special needs child. Do what you think is best and forget about the judgments and questions. You know your child better than anybody, so you will make the best choices.

Don’t let your child’s disability consume you, enjoy life with your special needs child.