I went to a support group tonight for parents of special needs kids. I sat across from a set of parents just starting out. Just getting through the trenches of post diagnosis, and into that great vast barren beyond of “now what?”. I feel for you. I see you and your smudged eye make up, your mussed hair, your general aura of “Holy Shit” and your tired eyes and I wanted to tell you that you’ll get through it. You will. If I did, anyone can.
Having a kid who is not typical is overwhelming. Having a kid who is just left of “oh, I know why that happens” is exhausting and frustrating and beyond reason. Being a parent of a kid with seemingly no answers to daily/hourly struggles and battles is soul crushing.
Getting a diagnosis or a reason is the key to heaven, my friend. For me, once I found that puzzle that appropriately labeled all the pieces that make up my kid and seeing a title on the box was the biggest relief of all. I had a “why”. I had something to point at and say, “THAT is the reason.” I’m not crazy! I didn’t imagine that all of this is not normal.
Once I had a name, I could research. I could question. I could ask. I could verify and compare and discuss. I had power. I had something controllable. My kid’s tantrums were not in any way controllable, but having a sensory diet list was.
My kid falling down on the floor was less confusing and scary when I had a reason for it.
My kid screaming at the top of his lungs while punching and kicking was not at all acceptable or reasonable, but understanding the trigger that led to it was empowering.
Talk to people. Ask for help. Talk to anyone who will listen and it will get you farther. I would not have a starting point if I didn’t honestly and openly go to my friends and talk about my child’s behaviors and tell them truthfully what I was feeling and thinking.
Be open. You will always receive more when you are open versus being rigid in what you think you know and will accept. When your ship is sinking, recognize a life line for what it is!
For me there was nothing more healing than sitting across from someone with papers that declared a higher education looking me in the eye and saying, “Being a parent to that child has got to be hard. I can see how difficult and challenging and exhausting that must be for you. No wonder you are overwhelmed! Look at all you have to cope with!”
It’s like giving someone a full breath of air after breathing through a straw for two days. .. or eight or seventeen depending on your level of suffocation.
Someone once told me that each parent is given their child for a reason. There is a reason that soul was given to you. I truly believe this. It may be gut-wrenchingly hard and swallowing-cut-glass painful, but find a reason and stick it to your forehead. You can be this person’s salvation if you dig deep enough, drink heavily enough, and find ways to laugh and do it often… preferably in the company of sane people.
There are days when you never ever think it will ever change or get better. There are times when you think this will be it. Your brain is definitely going to now self destruct.
It wont. It doesn’t. You go to a dark room. You close the door. You get into the fetal position. You let a few tears burst from your eyeballs, you might even rock back and forth. But you find the strength after five minutes or an hour or three days to get up, and go back into the fray. You will find something that sparkles in your kid when you least expect it. Hold that thought close, and find a way to help your child work through their own mind. You can do it because you were chosen to, and you have the ability to.
While you feel that you are sinking in your life as a parent, please know that others are there beside you. We feel for you because we live it. You are not alone and no you are not the world’s worst parent. You are the most amazing parent for that little bugger because you are there. You are still fighting. You have not given up and after some time, I promise the rewards will rain down upon you.
These days in the eye of the grocery store tornado will pass. These years of limited expression and quick tantrums will pass. Those fucking fours will become fives, and then more mature sixes, and sevens. Time and patience are the least of your abilities and end of your sanity, but if you hang in there it will get better. I just wanted you to know that I see you. I was there. I understand the mind melting chaos of all of it. Every aspect. Friends, family, school, IEPs, therapy, insurance, siblings, behavior charts, stickers, birthday parties, all of it. I made it and I even like my kid!
My kid is his own case. Every kid is different, diagnosis or not. I just want you to know that after almost two years of independent O/T, three years of IEPs, three schools, one marriage counselor, parent counselors, seminars and 8,277 boxes of kleenex, my kid is a loving, logical, manageable, self-regulating, fairly typical eight year old boy who loves Minecraft, doesn’t get out of his bed 28 times per night after being tucked in. His nosebleeds are no longer the life altering event they used to be and he has friends who love him and a family that wants to be around him.
His Dyspraxia/Sensory Issues/ADHD/Depression no longer scream his introduction. They are a quiet background to the person we were able to help him become, and continue to help him strive to be.