Bringing home my firstborn was one of the greatest days of my life. I couldn’t imagine a more perfect little tiny baby. Fast forward a few years, and I was faced with the reality that I was going to be a special needs mom. This was something that I was not wanting to face, and it did take me a while to be able to say that my child was a special needs kiddo.
Since he was born, my son has always been on-the-go. He wasn’t always the easiest baby, and there were sure times I doubted myself on being able to be a mom to such a precious little gift. As the years went on, our life only got busier and keeping him entertained and out of trouble was a challenge. I chalked it up to him just being a boy, and not something else.
When he got to Kindergarten, he started to really struggle. The struggle was two-fold, partly because of the teacher and also because of him. His Kinder teacher wasn’t a great fit for him, but we also started to see him really get frustrated. It became obvious that his activeness is more than just being a boy. So we talked to his doctor and she suggested we start the process of an IEP, which is an Individualized Education Plan. He went through a load of testing at the school level and they came back showing that he had a speech delay, fine motor skills delay, and high markers for ADHD. For the ADHD part, we were told we should start down the route of getting him tested by doctors. His school back in Arizona started therapies as soon as the IEP was finalized and he made such great strides over the next year. He met goals that were in place and was doing great.
I, on the other hand, was having that inner battle of, “How do I raise this child who does not fit the mold of most children?” My dream of having that perfect little family came shattering down around me. But why did I feel like this was a death sentence to my family? At the end of the day, he is still that perfect tiny little boy I brought home and love dearly. Coming to terms with having a special needs child was a hard one for me. I felt like I wasn’t really a special needs mom, due to the fact that his needs weren’t as severe as others that I had known. There was, and still is, a deep seeded fear in my mama heart over his special needs, due to a disease that has affected our family, called Batten’s disease. I have always known that the realistic chances of either of my kids having it are very slim, but that doesn’t make the worry go away.
Something that has always come up at me, when I have doubts about being a special needs mom, is hurt. You know, no matter how small your hurt might be it is just as much as the next persons hurt. It makes me think that- yes- my child isn’t severely special needs, but that doesn’t make him any less special needs than another. I also know in my mama heart that this special little boy is here to help me learn more things, about how able I am and he is than I can ever imagine.
My son will forever have challenges in his life, but I hope and pray that with me as his mama, he will always know that no matter what I’m there.
We had a speaker at MOPs this morning, who was talking about her special needs child. She reminded me that, it’s not all about me when my son has meltdowns. It’s about him, and what/how is he feeling. And I need to help him find the words and understanding so he can really let us know what’s going on. He doesn’t need to fit into the box of what everyone else thinks is the norm. He needs to fit into his own box, which is something he has been doing since birth.
So, yes I am a special needs mama that will fight and advocate for my baby boy. Because he needs that voice to help him learn how to advocate for himself. And being a special needs mom isn’t the end of the world. In fact, it is exactly the opposite, it’s the beginning of a new world. One that is uncharted and full of possibilities.
We have a lot of journeys left in our life, between dealing with NEW IEPs here in Texas and also new doctors and all that comes with them. All I can do is pray that God shows me and my son the way to help him reach his true potential. At our last Psych appt, his doctor confirmed something I always knew in my heart. My little special boy is a gifted and talented little boy. She told me, that once we get this ADHD under control, he is going to blossom and be able to reach the stars.
So if you are struggling with becoming a special needs mama, just remember that it’s not the end of the world. YES, I felt like that. It’s okay to mourn the loss of what you had dreamed and hope for but know that there is a new journey for you. And while it isn’t the easiest journey, I am starting to learn that it’s just as good, if not better than what I could ever imagine. Yes, I sometimes wish I could have that “normal” child, but when I really think about it, I would never change him. Even through our most challenging days, where I am just exhausted, I always admire him.
