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Writer's pictureDaphne O

Raising a Daughter on the Spectrum Changed My Perspective Of Everything



When I was younger, being a mom wasn’t something that I had ever imagined. Even in my young adult years of love and courtship, being a mom wasn’t something that I really desired. Then I hit 30! Y’all know that little biological clock that people talk about? Well it is REAL! It started to tick slowly, but then the ticking got faster and louder. All of sudden, being a wife and mother was all that I could focus on.


I eventually met and married a guy and we decided to have kids. I say kids with a “s” because we planned on having 3 but God had different plans for us. Imagine how disappointed I was when I couldn’t get pregnant right away. I mean, I kind of expected some delays because I am a PCOS Diva (different story for a different day). PCOS is a common denominator for infertility for women. Getting pregnant proved to be more difficult than I initially anticipated. I had to see numerous specialists, have many test done, and was on quite a few medications. After a year of trying and still no pregnancy, I was ready to give up and that’s exactly what we did. We gave up. Then BOOM! Out of nowhere, I became pregnant. Talk about being excited! It was the best news ever. Now my pregnancy journey wasn’t quite as exciting, and that’s another story for another blog…maybe. Let’s just say, I was happy when it was over and she was here. So here I have this beautiful baby girl. My Kayla Bean. Just perfect in my eyes. Things in my world soon began to changed drastically. My marriage came to an end and I found myself being a single mother…side note: not all single mothers start out that way.


As a baby, Kayla Bean seemed a little different to me from what I had seen in other babies. For example, she cried excessively even when I couldn’t see anything obviously wrong. She could only be comforted if she was sitting directly in someone’s lap. She would refused to sleep unless she was directly under my arm (this actually lasted for a few years). She also hated (I mean cry to the top of her lungs hated) to ride in a car. A five minute trip down the street seem to take forever because of all the crying and screaming. I now know that it was the motion of the car that she hated. It was a sensory issue for her. She didn’t like the baby swings or rockers either. The one thing that she did love was to bounce. She loved to be bounced up and down. She would do this excessively and it didn’t’ seen normal to me. Fast forward to about a year and half of age, my mom noticed that Kayla Bean would do things that weren’t usual for toddlers her age. For example, she would bang her head on the floor when she was frustrated with something (thank God, she has overcome that behavior). She would also outright fall on the floor and roll around when she didn’t understand something. She also wasn’t meeting her benchmarks with sounds and word productions. She had an assessment to attend a preschool that was designed to help kids with developmental delays. They immediately saw signs of autism, but said it was nothing to worry about because they may be behaviors that she might outgrow.


Let me just pause for a minute and say, if there are signs about your child that are concerning to you, always look into it. Always! I had Kayla Bean seen by a professional psychologist and she immediately saw signs of autism in her without doing any assessments. So we completed all the necessary assessments and she was officially diagnosed with autism. I was relieved to know exactly what was going with my daughter but I was also sadden by thought of the effects it would forever have on our lives.


"Early intervention is important..."

I have to interject and say that early intervention is important! I had a tense conversation with a school psychologist who didn’t want to acknowledge her diagnoses from the outside psychologist, one of his own colleagues. He stated that she may outgrow her behaviors. Although it’s true that behaviors can improve on the spectrum, it is not true that one can outgrow autism. I can’t begin to explain how furious his statement made me. As a professional, I felt that he, of all people, should have known better. We didn’t have to work with him much longer due to the fact he moved on from a different role from the school. The school’s new psychologist is awesome! She listens, she explains, and she understands. She’s apart of team Kayla Bean and I love it!


Getting back to where I left off, after Kayla Bean’s diagnoses, everything changed for me. How I viewed the world changed. Her communication skills were lacking, so I had to find different ways to communicate with her. Even my style of music and television shows had to change because I had to filter out content that would be difficult for her to process. I couldn’t even play my favorite radio station while riding in the car (which she now enjoys) because many of the songs that were aired weren’t appropriated for a child with limited understanding of some of the lyrics. Everything that I formerly knew had to change. The way I did my grocery shopping changed because she was sensitive to lights and sounds, how I visit family and friends changed because they weren’t able to understand her behaviors, and how we spent time in social settings changed because she struggled with social interaction. Everything changed!



Although this journey has had it many difficult moments and I have had many of my own meltdowns, I know that God doesn’t make any mistakes. I know that he chose me specifically to be Kayla Bean’s mother. I have questioned God on different occasions as to why he gave my child these special needs. The older generation always said that you never question God, but I ask how are you supposed to get answers if you don’t ask questions? Kayla Bean is a masterpiece created by the Master, Himself. He gave her these special needs because it was in His will to do so. He blesses me with her, because He knows that I am more than capable of being her mother. She is my renewed blessing everyday! Like I said before, God makes no mistakes. We can make our plans all day long, but God ultimately determines our paths.


"Always advocate for your children! Always!"

If I had to give any advice to other parents, It would be to not compare their parenting styles to other parenting styles. What is working for one family may or may not work for others. There isn't a handbook on how to parent correctly 100% of the time. It is a natural learn and grow process. Always advocate for you children!. Always! Never stop being their advocate and spokesperson. Make sure that your child’s education team are all on the same page. Talk with each member, resolve any issues together, and participate in team meetings. I absolutely love my daughter’s current team. I can’t say that it has always been this way as there were a few bumps along the way. However, her current team is awesome. From the principals to the bus drivers, they are all awesome! They are all open to communication and we make it easy to communicate with each other. I absolutely can’t say enough about her special needs teachers. I appreciate each and every one that she has ever had, especially the teacher she has had for the past 3 years. This lady is awesome! You can tell she’s not just in it for the paycheck but she really cares about her kids. She has been a great part of our team and I am truly going to miss her when Kayla Bean moves on to junior high. Last but not least, I got to mention the bus drivers. Please be appreciative of the bus drivers. Kayla Bean has had some awesome bus drivers. I was scared to allow her to ride the bus at first, but they all help ease those fears. Her current bus driver (and a former bus driver of the same bus) are the bomb.com, for lack of better words. I love these ladies like family. They are awesome with kids and are willingly to work with you with issues that may arise. Please make sure you show support to all of your child’s education team members. It is vital to your child’s educational success.

Being a mom of a special needs child isn’t always easy and you will have your moments, but it is very rewarding. Their successes are your successes. Remember you are not alone and God well direct your path if you seek him out.


God Bless You All!









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Invitado
05 jul 2022

Awesome post!

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