It’s been a long time since I’ve written a blog. Lots of changes have occurred in my life, my family dynamics since the last time I shared anything with my followers. Hmm… Where do I even begin, with what thought should I lead, or what should my topic be about. I think I’ll begin with how I’m doing today. If you really wanna know how my life has been? I’ll say it’s been both good but with some miserable moments. I know we all carry alot at times and some of us more than others, I’d like to believe my situation is on the heavier side of that scale. It’s been a little over 2 years since I wrote a blog and, in that time, lots has happened. Most of you know my mission is centered around mental health advocacy, however, today this article is about me and my own mental health and how I’ve been impacted by those around me and what I’ve experienced. I’ll talk about my youngest son, who will be turning 21 next month, he has developmental challenges specific to his death twice as an infant, which has left him with a brain injury. As a mom of a child with such challenges, it can be both rewarding and burdensome at times. Especially, when you don’t have a large support system to help carry the load and relieve you from moments where you just need a release and to be able to breathe. I’d like to think that I’m not alone in the “special needs” realm when I say it’s exhausting, tiresome, and you have to be built as a parent who can handle it. Let me give others, some examples, because I know someone somewhere will read this and say, there’s no difference in whether your child has challenges or not, because they will say that all children have challenges of some kind, which I would agree with but at the same time I don’t.
My life thus far, has been filled with ups and downs, more downs that ups it would seem presently. It’s difficult to explain on paper, but when you have an adult child with special challenges, it’s different. All of my days look exactly the same, filled with so much sacrifice, love, compassion, frustration, and gratitude all bundled into one. It’s honestly difficult when you have to take care of a child that lashes out on you at any given moment without any warning, and says things they don’t mean, and then turns around the next moment and apologizes because they feel bad and then does it allover again the next time. And it can be especially challenging when they decide to break things in your home or stuff that you brought for them because they have no comprehension of what it takes to get things. They don’t have that type of capacity of comprehension. It’s also challenging when you have to walk on eggshells in your own home because you want to take a breather, but every room you seek to escape to your followed or called for. And raising a child with challenges like mine, also involves wiping their butt just as your sitting down to eat a meal or already half way through your meal and now they’ve gone poop at the most inconvenient time. It involves lots and lots of sleepless nights because they won’t sleep or fall asleep until the next morning daylight. This was what my life was like up until we decided to finally explore medications for his behaviors.
It’s a difficult thing more than others think, my life has become all about caring for him and his needs and well-being, while taking the demands to avoid conflict so my house doesn’t get destroyed due to a misunderstanding. I think a lot of us “special needs parents” are burnt out and exhausted but we put on our fake smiles and just put on our big girl panties and just do it! Now you’re probably asking yourself, why don’t you get a caregiver, we have one, but her availability is very limited, yet appreciated in the highest. And she is the only person that we trust with our son, because she knows him well and was his former high school sped teacher. I struggle with the thoughts of desperation in wanting to find a full-time caregiver that can come hang with Erik for 8 hours a day, and then I have thoughts that it’s my child and my responsibility to raise him and take him to his recreational activities. But then, I’m always faced with those trying moments like this past week thru today, where he is moody, and yelling at me for no apparent reasons, and this is after trying to keep him happy and taking him to the water park, letting him do his bubbles, taking him to grab lunch at a place of his choice and then he will get ticked and say things, like I get on his nerves and I piss him off. Yet in the next moment, he’s asking me for help with something or again he’s on the toilet and needs to be wiped, and I’m supposed to do all of this with a happy face or he’s going to read my mood if I’m not faking my cool and then he escalates. See I’m not allowed to express how I feel to him, or that my feelings are hurt by his actions or behaviors because he will either say he doesn’t care and get angry or that he’s sorry and begin to cry for the next few hours. Neither of which I care to endure, but really have no choice if it happens, I just have to ride the wave. I don’t get any time for myself much anymore these days, unless it’s a couple of hours here and there, but as for a real break and getaway to relax, that hasn’t happened in years.
I’m not writing this article for pity or for you to feel sorry for me, but I’m sharing with others, who don’t “speak the language” of a special needs family to understand just how challenging it can be. So, when and if you should happen to see us out in the community and possibly having a moment with our child, that you aren’t so quick to judge us, the parent, or the child for their behaviors. Because some individual’s disabilities are invisible, meaning that you can’t tell if something is different with that individual just by their appearance, because they appear “normal”. I’ll just say this, not every person has a physically noticeable impairment. Just know that we are doing the best that we can to take care of our child and have probably already been up all night long with him or her and we’re already exhausted. It’s hard enough that we’ve had to take our child with us to begin with because we needed to grab some essentials from the store but have no one to leave them with so we have no choice but to try and strategize a plan just for that short store trip. It goes a little something like this for me, I’m going to park in the handicapped, I’m going to a store where I know the aisles well, and that I know I can get in and get out quick and offer to get him a treat for going with me. You know what’s especially difficult, that I’ve ran into, is this, we are already in the store and now he has to use the restroom, and it’s a far walk, plus he can’t go in the men’s by himself, so I have to take him inside the women’s with me and the stall is too small for both of us to squeeze inside so it becomes a moment of do I let him piss his pants, or do I just let him use the nearest stall with the door open and me standing behind to try and block the view?! It’s happened and it was at a park and this lady had her daughter with her and my son’s butt was exposed because he was standing to pee and she was offended, but I had to explain to her, which I didn’t feel I should have, but I did rather than going off on her. So, it’s not so easy, as some of us make it look. Some of us have kiddos that like to run, and I mean literally run all day long and they have to be chased and supervised. Others of us have children that require supervision for safety reasons, because they become overstimulated by certain things in public and they will bang their head on things, or they yell and jump in place. It’s because our children lack the “normal” ways to express their feelings, needs and wants, so this is their form of expression. Some use sign language to communicate.
Being really honest though, most of us choose not to take our children in public places where the general public are, because we get tired of apologizing for our reasons for the way life is, and we get sick of the stares and glares. The only real place you’ll find us, is where others “speak our language” and that is either at a special olympics event, specialized recreation activity or sport or at a movie theater when we know hardly anyone else will be there unless you live in a city where they offer sensory films. Basically, an environment that is catered to families like our own. These are the only places where we can breathe and allow our hair to blow in the wind and know our child isn’t disturbing others. Because all of us speak the same language, per say.
Think I’m joking? Ask yourself this then, when is the last time an influx of special needs families just out and about mixed in with the general public, like at the county fair, public market, restaurant, or even church? And I’m not referring to those who are employed at a job site. It’s rare.
I don’t want to leave you thinking or feeling that my son is a bad child with volatile behaviors because he is also one of the most lovable human beings, and considerate people you’ll ever meet. He likes to greet people and ask how others about their day, and how they slept, and how their family is doing. He loves God, gospel music and bubbles. It’s just the brain injury side of him, can go haywire at times and it just messes everything up in those moments. And it can be exhausting and draining. However, he is my heart and I love him so! We have good moments too, but I wanted to share with others the unpopular pieces of this journey.
And I’ll end with this, and this is for those of you who are quick to give your advice but not in our shoes. If you don’t have a child you’ve had to raise with special needs than I can’t expect you to grasp the fullness of what I’m expressing here, and if you have no children, then I’ll say go have some kids of your own first and then come talk to me about how I’m supposed to handle mine. And don’t just have a child of your own but let it have some extreme health care challenges and then come talk to me.
So after having read all of this, ask me how I’m doing? I’ll let you figure that out.
Thanks again for being here, for following my blog and well wishes to every special needs parent out there doing it!