Parenting is the most fundamentally difficult thing most of us will ever do. It is a landscape of seemingly impossible choices with hazardous turns and irreparable consequences. On top of that, there are always voices crouching in silence, waiting for any perceived misstep so they can spring into action and shame a parent for whatever decisions are made. Being a parent is hard. Add in the complexities of special needs kiddoes and it can become overwhelming. For a special needs parent, there are additional worries, additional heartaches, and additional stresses. Know that you will always find a friend, here.
My oldest, the Child of Promise (COP), is a remarkable and wonderful child. She was born early, spent her first month of life in the NICU, and had 2 separate brain bleeds which, although they were not severe, have led to multiple diagnoses and difficulties throughout her childhood. As a toddler, a name was attached to the delays and struggles we were already seeing. Apraxia. The best way I can explain apraxia is to tell you to imagine a disconnect between the motor movements your brain tells your muscles to make and the actual movements your muscles make in response. Imagine your brain telling your left arm to move to the left and your left arm moves to the right instead. This is hyper simplified but for the apraxic child, the muscles responsible for motor movements don’t work the way the brain tells them to work. The effect on speech can be devastating. Early intervention speech, occupationl, and physical therapies are critical but apraxia, for us, means that my daughter has to work hard for progress that just comes naturally and effortlessly for her peers. We work three times as hard for a third of the developmental results. We deal with things most parents don’t even have to consider. And we are most fortunate. COP is an amazing little girl with a kind spirit and a determination that cannot be taught. She is perfect.
To the parents of apraxia, hang in there. You’re not alone.