I am a special needs mom. Every day I worry about my child. I also have a lot of hopes for her and her world. I often feel outspoken and misunderstood as a special needs mom. This is why I wanted to write this post. To hopefully shed some light on what it is like.
We are often faced with challenges in life. Sometimes they are things that we thought would never happen to us. Or that we thought we could never handle. This has been true for me as I have become a special needs parent. In nursing school, I learned about autism and other developmental disabilities. I secretly hoped I would never have to raise a child with these difficulties. It sounded SO hard. How do parents do it? Why do these things have to exist?
I know now that we do it because we have to. We do it because we love our kids no matter what. No matter what happens I just try to meet my daughter where she is at. This is all that we can do.
I think all parents feel inadequate at times. Maybe all the time. To say I feel inadequate is an understatement. I really have no idea what I am doing. There is always this little voice in my head thinking “did I cause these problems by not doing…” I have often wondered “why me?” As I fumble to describe her problems to friends, family, and acquaintances. Despite all of this I have managed to keep moving forward, making the most of my experience.
Here is a list of worries and hopes that I have every day as special needs mom.
I worry about my child being included in school
Because of her attention and learning difficulties, my daughter doesn’t interact well with kids her age. She has odd behavior that kids her age don’t understand. Luckily, for now, she is in a self-contained special needs class. She will hopefully integrate into a normal class someday though. I worry about her being bullied for being different. Or that she won’t have any real friends.
I worry that my child won’t be able to do normal kid stuff
By normal kid stuff I mean, sports, dance, riding a bike, etc. We had her in dance class for a while but once she started kindergarten it was too much for her. She would just lay on the floor most the time and not follow directions at all. She still needs one on one guidance or she could easily wander off and get lost or hurt. This is another huge worry.
I worry about what people think of my kid when we are in public
As I have mentioned, my daughter has some odd behavior. She often won’t talk, instead, she makes funny sounds. She still throws tantrums. I often have to carry her out of a place because she doesn’t want to leave. While on the outside she may appear completely normal, she doesn’t behave like a normal kid her age. She is just now learning how to tell someone her name. I am always hoping that the people around me can tell she’s got some disabilities or that they don’t mind her odd behaviors.
We celebrate even the tiniest accomplishment
We get so excited anytime that she does something that she couldn’t do before. For the longest time, we were unable to teach her how to do a basic puzzle. Then one day, she came home and started putting doing all of her puzzles! It was so exciting!
Her biggest accomplishments lately have been talking better and better. We still struggle to have “normal” conversations, we are better able to communicate with her though which is also super exciting.
We hope that she will continue to learn and grow
She is continuing to learn and grow, but much slower than she needs to. At this point, it is very likely that she will always need help with basic activities. She still needs help getting dressed, isn’t potty trained, and needs guidance throughout her day.
We still have hope that she will catch up. We are even trying a special diet that we hope might help her focus better. And we are seeking more help from her doctors about what we can do to help her.
We hope that people will try to understand us better
It is very hard to explain my daughters struggles to friends and family. I am getting better at articulating what she can and cannot do. People often tell me that she seems normal to them, or they think she will be fine. While I appreciate these people’s optimism, it’s not super helpful. I think that special needs are greatly misunderstood in general. Nobody knows how to react to kids that are different. I know that before I realized that my daughter had special needs, I didn’t know how to react either.
Each special needs kid is so different as well. While some may have the same diagnosis, they do not all have the same attributes. And there are many, many different diseases that can cause special needs. The best way that you can understand us better is to ask us about our kiddo. Or offer to help in some way. We usually can use it!
We hope that she will make friends and that others will watch out for her.
It is exhausting worrying about my daughter all the time. It is so nice when someone offers to help. Knowing that other adults and kids understand my kiddo and are willing to help her is SO helpful. I appreciate Eden’s teachers and aids at school so much. When I first started sending her to school, I would worry about her all the time. Without all of these peoples help, my daughter would easily wander off or get hurt.
No, we wouldn’t change a thing about her
Despite all of this, I wouldn’t change a thing about our daughter. Sure, sometimes I wish she could do things that other kids her age can. But at the same time, I marvel at her innocence. She is oblivious to all of the terrible things of this world. She is so happy. In many ways, her disability protects her from all the bad things in the world. Despite many daily struggles and frustrations, I love my daughter so much and am so glad that I get to enjoy her sweet spirit.