Beautiful and Unique is What You Are!
Lessons in special needs parenting
As a parent, you want the best for your children. Learning an area in your child’s development is falling behind, it simultaneously breaks your heart and terrifies you. Who wants their child to suffer extra hardships in life? The worst part is, that unless you study child development, you likely have no idea how to help them. Heck, I was just getting the hang of the whole parenting thing. Once I was told my son was suspected of having Apraxia, I was devastated. He was then diagnosed with a fine motor delay. I did not know what any of it was, but I did know it didn’t sound good. It felt like the world was falling apart around me. He was perfect to me, but none of the therapists saw him that way. Did my lack of parenting experience cause this? Was it the neglect he suffered during his first two months of life? I cried and worried, as a child with “special needs” would he lead a normal life?
The fear and the sadness lasted about a week until the alternating therapists’ visits began. I studied everything I could about the diagnoses. I learned Apraxia is a motor speech disorder, meaning he has difficulty coordinating his muscles to form words among other things. It would be a long road, but he could learn to speak competently. At the same time, Apraxia came to light, it was also recommended he see an occupational therapist for a fine motor delay. He had a slight delay in coordinating small muscles of the hands. He was also later diagnosed with sensory differences. It was no longer time to feel sorry for myself, it was time to fight. Whatever happened from this point forward, I dedicated myself to making sure his needs were met to overcome these hurdles. I was no longer just his mom, I was now going to become his speech therapist, occupational therapist, and champion. The therapists work with him, talk with me, and leave us with homework. Finally, I was no longer scared or worried, I felt overwhelmed but surprisingly empowered to help my son.
“I wouldn’t change you for the world, but I would change the world for you!”
The therapists became my rock. Whatever those women get paid, they deserve more. When things would descend into chaos, they would help me find solutions. I studied sensory issues and speech disorders at night, and I would discuss my new found knowledge with them the next week. They helped me sort through all the opinions and misinformation. I did not realize how much I leaned on them until my son turned 3, and he aged out of the birth-to-3 program. We went from the birth-to-3 program to the S.O.L program. Yes, the second phase was the “Shit out of Luck” program. In the birth-to-3 program, the therapist comes to your home, works with you and your child, and leaves. The S.O.L program includes long waiting lists to get into programs, the best therapists don’t accept your child’s medical insurance, huge out of pocket medical expenses, and no real guidance. Our birth-to-three therapists tried to prepare me for this, and they gave me the knowledge to be my son’s advocate.
Despite being left flapping in the wind, we have prevailed. My son is almost 4 years old now, and he is making significant progress with a fantastic speech therapist. He attends the local Preschool. We also had a short stint in occupational therapy, but we have decided to work through it on our own for the time being. I also realized the power of my love for him. As I watch him start to navigate this world on his own, I know that will be the hardest part of all. He is the bright spot in my day and my twinkling little star at night. It is hard to watch people misunderstand him. He has suffered trauma they can’t imagine, and battles with things they don’t understand. I will move heaven and earth for him, but I cannot live his life for him. I cannot fight all his dragons.
His beautiful little soul needs to learn and grow. He needs to find his own strength. Our job is to give them the proper tools and guide them, all the while fighting the urge to decimate those dragons ourselves. This is the journey of special needs parenting. It not only bumps you out of your comfort zone but blasts you into an entirely different orbit. Like many foster and adoptive parents, I have mastered the ability to fight, defend, and teach, but to let go is so foreign it is agonizing. Clearly, my comfort zone will be vacant for a while. I have a new path to forge, and this one could take a while.