Dear Family:
My son has classical autism. We're still trying to figure out where exactly he falls on the spectrum, but we know that he has autism. Yes, this diagnosis sucks, and I wish more than anything that my little boy didn't have to deal with everything he is going to have to deal with in his life. But this is the hand we are dealt and we have to learn to accept it and move forward. Searching for another answer to a question that always has a definitive answer is not productive at all. This is my life now. My son has autism. Accept it, accept him, accept us.
Everyday I have someone either questioning the diagnosis or asking how they can help. The first way you can help, is to stop questioning the diagnosis. I assure you, this was not come to lightly. I have taken the boy to some of the best doctors in the area for diagnosis. I didn't just accept the first opinion that I was given. I got a second, third, even fourth opinion on the matter. When his pediatrician said autism, I cried, right there in the office. My heart broke. I've always know something was off my little boy. His fine motor skills have never really developed. He doesn't make good eye contact. He doesn't digest his foods easily at all. He has phases where he cries when he pees. He cries in his sleep. He bangs his head against walls or the floor and laugh about it. He can parrot words back to you, but as for what he says spontaneously? Maybe a handful of words, and less of those are functional or communicative. Until very recently he wouldn't sleep until 3AM and that was an early bed time, waking up every half hour to two hours max, and when you put him to sleep he screamed bloody murder. His sleep is better, but still not where I'd like it to be. And now we can't get him to eat. He's two, and still on the bottle despite how hard we've tried to get him off. And he'll space out, and I don't know where he goes, which admittedly he gets from me. But you know what? I have seizures and randomly passout or no apparent reason. Him getting something from me is not exactly comforting.
What would you do if your child had this laundry list of issues? This isn't even all of it. This is just what comes to mind currently while my husband is talking to me about his computer game and flipping a coin in front of me. So you ask me what you can do for us. You can accept the diagnosis and the struggles we are going through right now. If the diagnosis changes, whoopie, we'll let you know and you can accept that one too! You can support us. Not just in this, but as people too. You can include us in family things. We might have to make accommodations, like at Christmas when we had the boy in his high chair, but we like to be included too. And you can give us a break every once in a while. A couple hours of autism free time.
Guys, I'm going to be honest here. I'm lost. I don't even remember who I am anymore. I honestly think I need to go back on my medicine because I've been dealing with the bipolar disorder for eleven years, but the depression is getting the best of me. I'm miserable, I don't even remember what it's like to be happy. I mean, truly, lasting happy. I still have moments. I love my son. I laugh, I smile, I enjoy things. But over all of it I'm waiting for the other shoe to drop. For the little bit of sunshine I've found to be covered over with clouds. And it always is. I look for a job knowing that income is needed, and thinking it will also help relieve some of the stress. If I don't have to worry about where the next dollar is coming from, and if I can get away for a few hours a day, maybe I'll be okay. And then the boy with run repeatedly into the wall and just laugh. And I think, what will I do with him? Who can handle that? Who can handle getting kicked in the face constantly during a diaper change? Or his self-harm and disturbing stims? I love him, but it's a lot to handle even for me. Will a daycare even take him? Oh god, what would he do the other children? What do I do!?!
I've lost so many of you, not that most of my family has ever given two craps about me to begin with. I was the mistake that ruined the golden boy's life. I get it. I'm not going to get into my personal demons and why I will never be able to trust anyone, form a real bond with anyone, and why I've struggled with low self-esteem and negative self-worth my whole life. That's a whole other story for a different day. We all have our stories, our issues, our secrets. But lately, what few family and friends I've managed over the years have all but disappeared. So those of you that are left, I need support. I can't do this on my own.
I know that this letter has been all over the place. I'm sorry. I'm giving you a glimpse of what it's like inside my head. I have a million thoughts a minute running through my mind. I'm emotional exhausted. I'm depressed. It's a cycle I can't be free of. And sometimes it's scary. Yes, I'm scared. I'm scared of the autism and how it's affecting our lives. I'm scared of my own mind set. I'm scared that the future is set up for failure already, and that there is nothing I can do to fix it. I'm scared that no matter what progress we make it will never be enough. I'm tired of being strong and pushing through this and doing the best I can. I want to just stop. But I don't have that option. I have a little boy with more than he should have to deal with on his plate. I need to be strong. I'm breaking, maybe already broken, but I need to hold it together for him. Because I might not be able to do this on my own, but he can't do this without me. So, with or without help, I have to find a way, because I can't let him down.
So family, what is it that I'm asking you? I ask you to remember that I'm just a person too. I deal with my demons just like you do. My major concerns may not be the same as what yours are, but they are just as devastating to me as yours are to you. I don't presume to have it worse than you. Please don't think that's what I'm saying. All I ask is acceptance, and maybe occasionally a kind word my way, a smile, understanding when I can barely muster the energy to do the basics, let alone anything extra. I'm trying. And most of all, love my son. He's your family too. Thank you to everyone who is already doing this, and will continue to do so.
So, what do I, as a mother of an ASD child and woman with bipolar disorder, expect of you? Support, understanding, compassion. So maybe we all expect just a little too much of others.
Sincerely,
Me.
P.S.- What was the point of this? I wanted to give you a look inside my mind.
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