M. M, I was thinking today. M is for Mike, who is Anthony's excellent father. If your child gets an autism diagnosis, look across the dinner table at your partner or spouse and if it's not a super tough and honest individual who would do anything for his or her family, well let's just say I hope it is. It is a tough and long road but I feel very lucky that I am married to someone like Mike, who is smart and reassuring and has a great sense of humor and makes our lives not just easier but great. But I'm not talking about Mike for M, I decided. Then I thought maybe Miracle. Or Magic. So often when things go well with us, it feels like a miracle, it feels like magic. The other night we were all up in the girls' room before bed and Mike was taking Anthony into his room so I said good night and went to kiss him and Anthony leaned in for a kiss, and it was like magic. Mike and I were laughing and giggling and so amazed. Three days in a row, this week, Anthony has sauntered into the bathroom and sat down and pooped on the toilet. Miracle. Magic.
But I'm not talking about THOSE words either. The word I'm using for M is Medicine. Anthony was diagnosed with epilepsy this week. We went to see a pediatric neurologist after he had three episodes that we thought were seizures. As soon as I started looking into it, I looked into vomit and autism and poof! I read that 30-40% of kids with autism developed autism AND it was very common among non verbal kids with autism AND it usually happened during pre adolescence. I mean, it was everywhere and as I called around to his developmental pediatrician and talked to the nurse there, and as I talked to other parents, everyone, everyone was nodding their heads, yes of course it sounds like seizures, they said. This makes me really mad, I mean, it's one thing that no one will treat us medically for autism, but could we not treat actual MEDICAL conditions medically? Do I have to do EVERYTHING? SHEESH!
I asked for recommendations for pediatric neurologists and then I asked our pediatrician for a referral and he got us in with this guy who a lot of other people had recommended, so that was good. He was very nice, the doctor, and he said that once a person has two seizures, they call it epilepsy. Anthony had an EEG, which came back perfectly good, which the doctor says happens half the time. So now Anthony is taking ... some medication and I forget the name of it, but the doctor said one of the side effects is that it can have a relaxing effect, which, um, okay! It was funny, Anthony was ON FIRE the day that I took him to meet this doctor. He turned on the sink 40 times, he was climbing up in the window, literally climbing the walls, tearing the paper off the table, just nuts. So when we were talking about medication the doctor said this one had a relaxing effect and maybe that would be okay? Mom? Ha!
He's only taking it since Sunday, and sometimes I think *I* am going to have a seizure when I am trying to give him the medicine in the morning, but so far, so good. Everyone keeps saying how SORRY they are and OH NO what will we do?, but I am fine and I think Anthony is too. I told my brother yesterday, I am relieved to have a medical condition that can be treated medically. It's not like I took him to the neurologist and the guy told me, yes he has epilepsy and good luck, figure it out. I feel like I have some guidance and care for the first time since we have had Anthony's diagnosis. So, onward and upward!
Tuesday, October 08, 2013
L is for Love. I of course love all of my kids, but I don't love them the same. I love them equally, I guess, but not the same. I love Anthony the hardest because I have to.
Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.
I just saw this quote recently and it made me think - I love Anthony so much and I am constantly, constantly thinking about it, how by loving him, I get braver and stronger and more able to love him. The first bit of advice that I would give someone who has a child with a new autism diagnosis is this - love them. Love them as hard as you can and then you'll get strength and courage to love them more and out of that will come an ability to help your child. You have to just love them, autism and all.
It's like when people say they HATE cancer or something because someone dies from cancer. I can't say I hate autism because Anthony has it, and for me, to say that I hate autism gets a little too close to home for me, I can't say that I hate anything that has to do with Anthony.
Love is the answer, and you know that for sure.
Love is the answer, for sure, as far as I'm concerned. When you have a child with autism, you can't have the usual, typical things move you to love your child. Maria has been climbing the monkey bars at school, and it blows my mind that five weeks ago when she started kindergarten, she couldn't do anything but hang from one bar for a few seconds and now every day, she says WATCH THIS MOMMY! and she just swings from bar to bar, so determined and then so proud. She is doing really great at reading mastery, she can spell all sorts of things and Saturday when we were at the library, she told me she wanted to find books by this certain author. My heart swells with love and pride when I see her swinging from those bars, and when I looked up the author that she mentioned and found out that he was, in fact, a children's author. I can't believe the way she is flying through her life!
I don't have those kinds of moments too often with Anthony. I have a lot of frustration, a lot of worry, and a lot of - well, a severe lack of faith in other people. Two times in the last nine days, Anthony has thrown up and then had what appears to be a seizure, and two times we have taken him to the ER. Well, Mike has taken him because when it happens Anthony can't even move and Mike has to carry him. The ER doctor this time saw Anthony for maybe ... two minutes? I'm not sure, she told Mike that she couldn't find anything wrong with him and that we should follow up with his doctor. I can't imagine how much we're going to be charged for that special care. Now I've been trying to get his pediatrician to order an EEG for him for two days and nothing! So people are jerks, and I think you have a great opportunity to realize just HOW jerky they are when your son or daughter has autism and you have to count on other people so much.
Sometimes we are so tired! Friday night I worked super late, the restaurant was crazy and I was there until midnight, and then I met my sister for a drink and THEN I got home and I couldn't sleep until like 3:00 and then Anthony was up at 5:30 and the baby at 5:45, and ugh, I was so tired. I wasn't probably as tired as Mike, we were both just beat. That rarely happens anymore, we are on a pretty good run of Anthony sleeping well, which I hate to talk about, but my point is that it's hard to feel loving feelings when you are tired, or worried, or sad, or worried or tired. So when you find out that your child has autism, even if it is your first instinct to get mad or want to find a scapegoat or maybe you want to wonder WHY this is happening to YOU, my advice is this - feel all those feelings for about 24 hours and then just start loving your child, and keep your mind and heart so full of love that there isn't any room for hating autism, or for being mad at anyone or anything responsible. You don't have to love being so tired or worried, I mean, DUH, who would love that? Nobody, but by loving your child so much you will find that it doesn't matter about all the stuff that you have to do, all the extra stuff. Because it just grows - courage grows from loving someone deeply, like Mr. Tzu said. Or Mr. Lao. When you are tired, or doubtful, or you hate every medical professional around and you think why am I doing all this? WHY LORD WHY, as I always think? Just remind yourself the answer is love. And you'll know it for sure.