Trudging Through the Muck
Trudging Through the Muck. It is so challenging to parent a special needs child. Parenting, alone, is challenging. My child has a very rare condition called Opsoclonus Myoclonus Syndrome. Typically, a child with OMS, they will have neuroblastoma in their chest cavity. However, some cases are idiopathic, like ours. Idiopathic means there is no real reason for something to happen. In short, we have no clue what brought OMS along in our child’s life and body.
One day, my child was completely developmentally on target and perfectly “normal” and then the next day, he isn’t. He went from fine to newborn status with a side of extreme shaking, much like Parkinson’s. My child had to relearn all the things. He had to learn how to sit up, hold his head up, walk, talk, feed himself, etc. It has been one of the most challenging journeys of my life.
I do have a great support system (with the exception of 98% of any doctors). He has grandparents, great-grandparents, siblings, therapists, church, etc. However, no one really knows how it has all played out except those of us who have lived it, daily, with him.
My husband, 6 of my children, my son, and me. We are the ones who have walked it day in and day out. There have been many times I have had people at church pray over us, come to our home to pray, family, friends, who have all loved us well. Truly, they have filled in the gaps in so many ways from encouragement to prayers to food to just listening to me cry.
Yet, there is so much they do not know. There is so much I hold close to my heart because it is hard…sacred…forever changing. I have had to share more of these sacred moments to his therapist because my child is remembering some of the darker moments of his illness. Moments I thought he wouldn’t remember, that I prayed he wouldn’t remember, but he does and we have to deal with it.
When I talk to people about things that are just a part of our life, I realize it isn’t normal. The looks on their faces are shocked, saddened, horrified, and I am just chatting away. Oblivious. This is our normal but when I mention something or someone notices an odd behavior, they are dumbfounded because I speak of this so matter-of-factly.
In the beginning, for several years, our goal was to keep him alive. He lost 3 years of his life doing a massive reboot of relearning everything. Time stood still and we had start over. He had so many hurdles, doctors appointments, therapists, etc. that that is all we did. It is the physicality of the disease that we had to address. Now that the physicality is not so much an issue (barring when he gets sick), now it is the backend of OMS that is kicking our ass. The backend is behaviors, learning disabilities, developmental delays, sleep issues (for some OMS kids), etc.
All the Things and Then Some
This past week, my son has struggled with impulsivity, anger, sadness, sitting still, and listening. The bus monitor had to come to our door to address and issue. We all met Jesus on my front porch. I am going to have to call her and share with her about our kid because she doesn’t know him. To her, he looks normal and should act normal. That simply isn’t the case. Without sharing too much, I intend on shining some light on our rare gem of a child.
He struggles with sitting, on the bus and not listening to simple instructions. The bus monitor was at her wit’s end and I get that but does she ‘get’ him? She doesn’t. That isn’t her fault. My son “looks” like a typical 9 yr old but what she doesn’t see is that he is developmentally about 6 yrs old.
Our son will argue with a tree stump, so he is game on and ready when it comes to anyone in authority. I think he takes after our third and possibly sixth child. Good grief they would argue with anything whether they are right or wrong. The arguing, alone, would make a grown man yield just to make them stop speaking. Our son is the exact same way. He may have a future as a lawyer.
On A Typical Day
I don’t even notice the difference. The age difference between my 6th and 7th child is 8 years. That is a huge gap. In my mind, he is on target until he is with other kids who are his age or even younger. That is when I mourn the loss of what is “normal” and have to readjust to what is in front of me.
It is hard. I am not going to lie. His challenges are steep but everyday we are trying new things but this past week, I was just tired. I get so tired of trying to explain it all away. He is like this because “blah blah blah.” All I get in return is the look of pity or a blank stare of confusion.
We are addressing all of this in therapy. That isn’t going well but we still do it every single week. He has a teacher that loves him and sees him even in the midst of chaos. We have a family that is supportive and a church that is faithful to pray. He is constantly seeing doctors, we have gone gluten free, and so it is an ever revolving door of learning.
Last night, we tackled some hard things that have happened and attached them to emotions. He and I spent about 45 minutes working on identifying emotions and understanding them. My son has a lot of medical trauma, birth trauma, acute trauma, and more. We sat and talked about specific things (lying, stealing, and fit throwing). Each scenario, he chose an emotion card and made a statement “I feel sad because kids at school won’t play with me.” We work on how he can approach these kids and did a little role-playing.
In situations like one of our children not seeing him or his birth mom, we pick the scenario and he makes the “I feel” statement with the emotion with it. I come alongside him and I make an “I feel” statement and we talk about it until he doesn’t have anything left to say. When he is done with the topic, he simply says “let’s move on” and we move on.
I am hoping this helps. The emotion cards are in his room, on the fridge, and I am going to laminate some and put them on his backpack. We have also started giving him some primrose and some all natural calming things to help with the impulsivity and rage.
In The End
I am not giving up on him but I am really tired. The thought of being on easy street sounds so good right now. Yet, everyday is a new challenge. I try to tell myself that he really is on target, even though he is behind developmentally. Honestly, I would chose him over and over even knowing what I know now. I love him and I know that he is meant to be my son, even on the hard days.
However, I would love for a concept to sink in with him. I would love for him ‘get’ it. My fear is that he will be labeled without people understanding who he is and what is behind the behavior. It’s hard to explain. If you are out and about and see a tired mama with a raging kid, show her and her kid grace. You have no idea what is going on behind the scenes. Honestly, you are seeing a fraction of what life is like in an isolated moment. Offer a smile without advice. Prayers are always welcome and you can definitely say a breath prayer as you walk by them.
Love. Be kind. Don’t scream at a kid who might be screaming at you. Even if they look “normal” most diseases are invisible. Grace upon grace.