This will not be one of those happy, butterflies and rainbows kind of blogs. I'm over that! I'm gonna call it like I see it. I will explain the cause for today's mood shortly. If you can't handle straight-forward, no nonsense, blatant honesty from me, you should probably stop reading. Because I'm going to tell it like it is in my house. I don't speak for everyone because people with autism are just that, people with autism. Much like I'm not exactly like anyone else, being neurotypical, Jake is not like anyone else, being autistic. One person with autism is one person with autism. They vary like anyone else. So don't take offense if you are living the 'autism lifestyle' and I say something that differs from your view. I am me and I have my opinion and I'm glad other people see it differently because at this point, I wish I did.
First point I'm going to make...mainstream media. If you watch television or are exposed to any sort of mainstream media you have had autism shoved down your throat. The statistic just jumped from 1 in 88 children have some sort of ASD, to 1 in 50. Let me explain this to you. There has not been some rapid increase in cases because of some radical environmental change. They changed their way of counting. Before the last survey, researchers counted 8 year olds. That's it. Now they have broadened their parameters to include all school aged children, from 6 to 17. So of course the numbers changed. How can you expect to have accurate representation with such a small group being counted? So that's the change there. Also, the media isn't doing justice to autism in my opinion. All you hear are feel good stories about savants with autism. "This 6 year old boy with autism can play concert piano from memory"...Or you go directly opposite, claiming that a recent school shooting was done by someone who was on the spectrum, causing fear and paranoia towards the autism community. Let me tell you, those are the exception. Just as not all "Normal" people (And I rarely use the term normal because it implies abnormality in someone with autism. And autism is our normal. I usually go with neurotypical.) kill people, autism does not cause insane outbursts. It also does not mean there will be some beautiful mind with out-of-the-ordinary skills. Jake is not a savant. He cannot draw cityscapes from memory. He is not amazing at math. He can't play various instruments simply by picking them up. For the most part, he is a 6 year old little boy. I think, and this is me, that if people want change, then be truthful. You can't expect governmental change when all you hear are great stories. Tell the truth people. If there are problems with your children, tell them that. If you want change, people need to know that changes need to happen. If we pretend things are okay, why would anyone change them for us? Don't pretend things are super. I don't know why people do that anyway. Does it show weakness? Well, I'm weak. Things aren't super.
I'd like to share a picture with you...
This is Jake, post meltdown. This is my face of autism. Post all the cute pictures of kids doing amazingly adorable things that you want. This is our reality. This was after a 30 minute meltdown that began because my husband, whose head you see, tried to put his shoes on. What actually caused the meltdown? We don't know what triggered it. Sometimes you know what causes it. He can be hungry, tired, over-stimulated, upset because of something that happened at school, mad at someone, who knows. But they usually consist of 20 minutes to an hour of crying, screaming, kicking, fighting, flailing, lack of control, he wants to be held, he doesn't want to be touched. He wants you near him, he wants you to go away. He has no control. His body and system are overwhelmed and he needs release. This is the only way he can cope with what's going on inside himself. And we are helpless, as is he. It is the most frustrating, horrific, sad, upsetting display you can witness. Rarely can you calm him down because you can't reason with him once it gets that far. Sometimes, if you are in-tune enough, you can see it coming and head it off, but not often. After he is done, his body is done. He usually cries himself to sleep. He is just spent. That's how this picture came to be. We have had multiple meltdowns because other kids won't play with him at school. That bothers him. Who wouldn't be bothered by that?! I'm bothered by it. Can I fix it? No. I can suggest to him that running around chasing other children is inappropriate. But why is it? Because other people decided it is. He is hurting no one. It gives him sensory input that his body craves. So he does it. Other kids don't get that and I can't make them at this age. This is not ALWAYS our reality, but it is part of it.
My current mood stems from my morning with Jake. He did not want to get out of bed, it's Monday, I didn't either. I got him up, gave him his medicine, and that was the end of our normal routine. He wanted cereal. I got him cereal. It was the wrong bowl and the wrong amount and I put it at the wrong seat. Normally, it doesn't matter. This morning it did. I sat out his clothes, which he normally puts on himself. I button his pants and tie his shoes, because he can't do that. Today he refused to do anything. He proceeded to lie face-down on the couch. I tried to dress him. He screamed, kicked, and took his shirt off 3 times and his pants twice. I was calm for a long time. He took his socks off, screamed more at me, and kicked me more. I know it wasn't the clothes. I have already taken the tags out, and I picked out the right socks. He was crying by this point. There is no reasoning with him when he gets to this place. I lost my cool and raised my voice while I was putting his shirt on for the 4th time. He screamed at me more, "YOU AREN'T ALLOWED TO YELL AT ME! I'M CALLING THE COPS AND THEY WILL TAKE YOU TO JAIL BECAUSE THAT'S WHERE YOU BELONG." I was done. I told him to get himself dressed and I would tie his shoes, that was all I was doing. If he felt the need to be late, then that was his choice, I wasn't taking responsibility for that. I was crying. He put a blanket in the floor, wrapped up in it like a burrito and laughed at me. So after about 20 minutes of screaming, melting-down violence toward me, we moved onto laughing at me. I can handle that; it only hurts emotionally. So he finally gets ready and we go to the car. He asks if we are going to see Grammy (my mom) after school and I tell him no, he had a bad morning so we wouldn't be seeing her, we would just come home. Stupid me. I should have ignored his question. Begin meltdown 2. He starts screaming and kicking the seat. He tells me, "Don't expect me to be waiting for you at the gate after school. I will sneak out with another class and I'll walk to Grammy's." I tell him, "You can't do that. It isn't safe. Someone could take you. We have talked about this, there are bad people that do bad things to kids out there." He laughs again, and says, "I'm not worried about it. I'm a ninja." NOW...you may laugh at this sentiment. But he really does think he is invincible. He has no fear. If someone tried to kidnap him, he really would believe he could fend them off. He has also started trying to roam again. Last week I chased him through the neighborhood 3 times in one evening. So I am actually fearful for him. And I don't know any other way to explain it to him. That is my reality.
Then there is the ridiculous amount of hoops we have had to jump through to even get to the right doctor to get the stupid diagnosis. We started at about age 3. He will be 7 in November. We have been to half a dozen doctors. Various therapies. An actual "autism center" which I use loosely because they were a joke, lied to us about our insurance and then sent us a bill for $1900, for doing NOTHING! He sat in a room and played with a college student while she asked him various questions and they ignored everything we told them. So nearly 4 years later we have finally found good doctors that know what they are doing and see what we have been living his entire life. And I see it all the time...people that say, "Oh my kid has autism."...that kid that can go anywhere and have no problems, that gets along with other kids, that sleeps, that eats anything, can wear any clothes, has friends, doesn't fight with you....that kid has autism? And it is shortly followed by, "they get SSI and Medicaid." Yep...there's the epidemic people should be so worried about. People that can work the system, manipulate doctors into a diagnosis, claim their kid has autism then get assistance for it! When people like us have to actively fight for anything! I don't want pity. Screw that. I just want to be able to get my kid the help he needs without having to do a song and dance every single time I ask for anything. That would be nice. But it's cool; I'll do it because that's what you do when you love your child. That child that doesn't hug me except on rare occasions. That kid that won't look me in the eye. That kid that can't make friends and cries about it for hours on end. That kid that can't eat numerous foods because the texture or taste makes him throw up. The one that doesn't sleep, still wears Pull-Ups at, night has night terrors where he screams for Mommy but then screams if I touch him. Can't stand for me to cut his fingernails, has to have every tag taken out of his clothes, wears his socks inside out because seams hurt. The kid that can't be in public places without having "itches" the make him scratch himself uncontrollably. The one that gets stuck repeating a phrase, line from a song, making a siren noise for hours at a time. THAT KID! That is my kid. Yep, I love that kid. I hate all the shit that goes with it. I want my kid. I want to be able to take all the other away and just have Jake. But that won't happen.
Here's the deal...I love Jake with every fiber of my being. But I am scared for him. I am scared for me sometimes. Not because I fear him. I can take anything he can dish out. I fear the world we live in, the stereotypes, what the future holds for him. I fear what the future holds for other kids like him. What if the things I do aren't enough and he isn't prepared for what life throws at him? If I fail then I set him up to fail. And he won't realize it is my failures; he will see that he is failing. And let's just say it...this autism thing sucks. For so long I have been desperate to hear the words, "Your child has autism." Well, I got em. Did it help? Not thus far. Will it eventually? Probably. We know what direction to go in. Is that an easy direction? For so many reasons, no. You can say that taking away his autism would change the person he is. I don't believe it. He would still be Jake. He would just be Jake that can make friends, go into public places, wear socks correctly, eat whatever he wants, sleep... He'd be Jake, just easier. And that's just not fair. And it isn't fair that he will have to learn at such an early age that life is unfair. That he is different from what society deems normal. That he will have struggles that the vast majority never face. That just stinks. And I know we are lucky. He is healthy by all standards. But you know, that doesn't make it any easier or more fun.
Hang in there, Tracey. You are doing a wonderful job with both of your boys and you have every right to feel the way you do. Sometimes you just have to let all the frustrations out, just as Jake does. You have many family members and friends who support you and know that everything that you do is for Jake and Charley. Nobody knows what it is like to be in your shoes and nobody has the right to judge you by what you wrote today. You were venting and being honest; there is nothing wrong with that. You have seemed to hit roadblocks since the beginning of this journey with Jake, but you have persevered throughout. I know this is overwhelming and emotionally draining, but you are one of the strongest people I know. I have so much respect for you and want you to know that you are loved and that we are here for you. If you ever need anything--an ear to listen or a shoulder to cry on, all you have to do is call. Love ya girl and stay strong! You can do this because God's got this!
ReplyDelete