When you get the official word that you are, in fact, an autism parent you'll go through a myriad of emotions. You'll end up questioning everything. I'm serious, everything. Did I do something wrong? What do I do now? What does the future hold for my kid, my family? What do I need to know?
Here is my first tip for you, from my experience. Grow a thick skin. When you think it is thick enough, figure out a way to bulk it up because believe me it isn't. You will be shocked at some of things you have to endure. From your kid, yes. But that's not the most difficult part. People you don't know are going to give you their opinion, their expert advice. They'll know more than you. You will be in a comfortable place with decisions made, the way things are. Then they'll "enlighten" you and you'll be back at square one with the questioning. If you are lucky enough to have one of those autistic children that can function without medication, I envy you. Seriously, I'm jealous. I do not have one of those children. No medicating and he cannot function in everyday life. He was overwhelmed and we were drowning. It's not fair to him, it isn't fair to the people that are entrusted to care for him, teach him, etc. Not gonna work. If you are one of those parents that are faced with the decision to medicate or not, I'm sorry. It sucks, I hate it for you as much as I hate it for us. Because you are in a horrible position. You have to decide for your child if you are doing the best for them. And believe me, you are gonna hear about it. People I don't even know that have found out he is medicated have told me, flat out, that I'm wrong to medicate a child so young. Well, ya know what, it's good that he isn't your kid then, because life would suck a lot more for him if he was. It is the best decision for him, that's all there is to it. But people still tell you that you are wrong even though they don't know your life, your kid, your story. They have an opinion and think it is their right and their duty to tell you that opinion. WRONG! I don't want your opinion, and if I did, I would ask you for that opinion. (Just so you know, I don't usually ask, so Shhh.)
But here is the kicker. The part that is going to kill you. The people that you know and love are going to tell you that you are wrong too. They may be more tactful, but they are going to let you know that they disagree with your choice. And it is going to hurt. You already question what you are doing, daily, without the input of other people. And with that thick skin you have developed, you know how to shrug it off when a stranger is an uninformed, unaware idiot. But when it is a person that you know understands your struggles, and you know they understand the guilt you feel on a daily basis, you just take it for granted that they are going to stand by your decisions and be supportive, uncritical. You will be wrong. And when it happens, you are going to be defensive, mad, and later when you calm down you are going to be crushed.
This was my day. We had a much anticipated psychiatrist appointment. Jake is having a rough time, and so we are too. Something is so terribly off that he is struggling to function again. We have felt like we are back at the beginning for a few months now, just waiting for today when we can get to the bottom of it. By the way, you are going to lull yourself into a false sense of security on a regular basis too, just be ready for it. I went thinking that maybe a medicine needed adjusted or something similar. I quickly realized that was not the case. Jake has gained 8 and a half pounds and grown an inch and a half since October. He is a big guy, will be a big adult. When you medicate your child, be prepared for a life of adjustments, because as they grow, their medicine needs will change. They are bigger and require more. Their liver matures and their body metabolizes medicines quicker, thus they break through the dosages. So this is our life from here on out. Adjustments. So they changed the dosage on 2 medicines. Okay, I can deal with that. However, I was not prepared for the addition of another med. He is aggressive, he's angry, he's defiant. And it isn't his fault and he cannot fix it on his own. So it is our job to find the right balance of things so that he can control it. Welcome to parenthood, right? The new medicine is often used to treat bipolar disorder. Am I saying he's bipolar? Nope, I'm not because he's still little and that is something that would have to be diagnosed later in life. I am saying he has a mood disorder. This is something we knew. Well, that mood disorder is being mean right now. So we are going to help him with it, because it's not fair for him to be angry all the time. That anger feeds the aggression and then the defiance. So it makes life difficult for everyone involved in his care and mainly, for Jake.
Skip to a little later. I have come to grips with this because I fully trust his doctor. Something I didn't think would happen but I honestly do. I think he has his best interest in mind and is very knowledgeable. I get a phone call and relay our game plan to one of the most important people in my life. And spend the next ten minutes being told why I'm wrong. Why the doctor is wrong. How he's on too much medicine. How we needed to take the one medicine away, the one medicine that has helped him with social anxiety and given him the ability to speak to people. That one needs to go because it is causing his problems. I get pissed, but I sit there and I listen. I keep my cool regardless of what was said. I yelled one time. This person says they don't but they obviously question my ability to care for my own child. I never let this person know that I am upset. But now I sit at home and I cry because I am utterly crushed. One person that I expected to be in my corner, isn't. All the strangers in the world can tell me I'm wrong and I don't care. All those strangers in the world can tell me I'm right, and I don't care. Because apparently the people that matter think I'm wrong. So now I go back to questioning everything. Every. Single. Thing. Every decision I am making. Because what if I am wrong? He's 7, he doesn't get a choice, he just has to go with the ones we make. Why did God decide that I'm smart enough to make decisions for another person and what if he was wrong? If he was, then surely Jake will grow up, realize it, and resent me. So I'll cry, I'll get over it, I'll convince myself that I'm not wrong, that I'm doing the correct thing. And I'll fall back into that false sense of security, until something else happens and slaps me back to reality.
So take my advice, get a thick skin. Then when you think it's sufficient. Get a thicker one. You'll need it.
