Ice Cream

He really likes his ice cream. He loves shakes and ice cream sandwiches, now. He used to love coffee ice cream bars and fruit pops. He goes through phases for what kind of ice cream he likes but there hasn't ever been a point in the last four years where he hasn't liked SOME ice cream or other. "Ice crease" he calls it. So cute.

He has been saying YES! and NO! recently. He doesn't really say them appropriately, but it's so fun to hear. He was sick yesterday but just headed out the door, back to school, today. He starts at his other school this Thursday, God only knows how that will go.

One Year Ago Today

I read this article/interview with one of my favorite autism moms, and it really made me think.  I have had a few moments here recently where I've had to sort of stumble through explanations about how Anthony is five but he is not starting Kindergarten this year.  I always think, when I say it, "and maybe never!".  But reading this article made me think how grateful I am that Anthony is who Anthony is.  I mean, I know he is who he is and he's perfect for me and me for him, but I can't imagine what I would do if Anthony talked but had autism.  Or if I had had him in a day care situation.  My friend Emi had her son in daycare or preschool or something and he got basically kicked out because he was a behavior problem, and he really just had asperger's and adhd. I don't mean 'just', but you know what I mean.  Our road to finding out that Anthony had autism was long and funky, but not like it is for some.  We're lucky. 

We are thinking of selling our house and moving and I keep thinking, should we move to a different school district?  I can't imagine that we will send Anthony to a public school, full time, until he communicates better and I don't know when that will be.  We are, thanks to his school, starting him on three hours a week of speech therapy starting next week, he's also going to (supposedly) get 45 minutes of speech therapy at his public school.  He's going to start next week getting more occupational therapy at his regular school and 45 minutes a week at his public school - we are really throwing the book at him, therapy wise, and I think he is really going to do well with it.  I am BULLISH for the FUTURE, I told Mike today and I mean it.  He has a great team in place at school, he is **whispers** sleeping better, and I just have decided that things are going to go better for us.  If it works out with that damned public school, it works out, but if not, I will just yank him out and send him to his regular school every day. 

My mom and I were talking about Faith today and I really - I just know that it's going to work out like it's supposed to.  I am not going to ask God if Anthony could please stop taking off his dirty diaper and making a mess, and I am not going to ask if he could sleep better.  I am always, constantly, asking God for the best for Anthony.  I thank God every day, several times a day, that Anthony is who he is, that Mike is who he is, that Anthony's therapists are who they are and even that I am who I am.  It's all going to work out just like it's supposed to, I've decided. 

Profile in Courage

He is so cute and he has been having excellent days in school. We are trying to get him set up in the public school system but LORD LORD LORD these people! are! making! it! difficult! I am so lucky because I have several friends who work as teachers and they are all falling all over themselves to help me, it's really nice. I hope we can get something worked out but if we can't, we'll just keep him out. I read the paper, I told these people yesterday at my meeting with them. I read about the teacher who gave the kid a candy bar with peanuts (to which he was allergic) to try and debilitate him enough that he wouldn't go on the field trip and be a "behavior problem". I know about the school where they restrained the autistic kid with the belt to the chair. I am never having that happen to Anthony. He has a high, high threshold on his insurance and if he was ever going to be in any danger, I'll just leave him at his ABA school forever. They'll invent NEW grades for him maybe? 13th grade? 20th? I just - I can't put him in a situation where he is at risk. "I believe in Anthony!", this one woman was saying yesterday and I said "I do too, but I am not willing to risk his safety. You don't even KNOW him, how can you believe in him?" Oy.

Sweet

Anthony starts OT next week and I have a meeting tomorrow about him starting at his public school. Please let's note they are in their THIRD week and are just now getting around to poor Anthony. Jerks. Once it gets started it will be fine, but they are always SO annoying to get going. It's like they're SO SUPRRISED that school has started again and these little buggers need education EVERY FALL. It's a giant school system and something like twenty percent of the students that were supposed to never showed up at all, so I feel for them, but I feel more for Anthony.

Ice Cream

This child loves the ice cream. As long as he says it, he can have it, so he ends up having like two per day. They are Skinny Cow low fat ice cream sandwiches, though, so he can watch his figure. Ha! One of his therapists is having her last day with him tomorrow, she is going back to school. Her name is Abby and she wrote us the sweetest note last week about how much she enjoyed working with him and how she'd miss him. Anthony really likes her too and I know if he could miss someone, he'd miss her. I mean, I'm sure he'll miss her but he just might not know it, or communicate it. Anyways. He is doing well, I am glad tomorrow is Thursday and it's my last day of the week to go and get him at school. Fridays he comes home with Amy for home therapy and it's been really going well. Sometimes he is like, 'what the hell, WHY am I being asked to  do things at home?' but mostly he is pretty plucky.
Oh! We had his occupational therapy assessment this week and I really, really liked the therapist. She seemed to really understand Anthony and what his major issues are. I could sort of see that sweet boy that he used to be, when the therapist was swinging him around, and it was just great. He made eye contact with me and was like WHERE HAS MY SWING BEEN, MOTHER?


He's going to start at the end of the month and I am just praying that it all works out, schedule wise. On Tuesday of next week, I'm having a meeting with his public school people and I am hopeful that they'll tell me that he can have his school day be any day but Tuesday OR that the OT at his other school will be able to see him on Thursday. I'm confident it will all work out. I'm really pleased about how this OT thing is going at his school. I mentioned it to the executive director, that I would love to know if she knew an OT that would come to his school and that would be able to run the insurance (this is our big issue with his speech therapist, we have to do all the billing ourselves and it's a GIANT pain), and she just ... got someone, and boom! we had an evaluation, and boom! now she's going to see Anthony and it's just all been working out so well that I am going to just assume the schedule thing will work out, too.

Lucky

I have been thinking about this post ever since a friend pointed it out to me the other day on Facebook.  I am getting really kind of crazy about it, so I thought I'd post, in case anyone that knows me reads it and is all of a sudden disinclined to say that I'm a good mother or that Anthony is lucky to have me (and presumably, Mike).

I remember a few years ago, when Anthony was little, I went to a MOPS meeting where the speakers were talking about adoption - one woman who spoke was an adoption expert, and one was the mom of an adopted child.  The mom talked about appropriate language and what you should and shouldn't say to an adoptive mom.  I remember one of the things she said was that she didn't like it when people said how LUCKY her son was to have her.  Her son was born in ... Ethiopia?  I think?  I'm not positive, but I think Ethiopia.  This mom said that her son was no luckier to have her than any other child.  Her point, I think, was that her son was her son no matter what and that they were a family and that people shouldn't assume that she had SAVED her son.  I totally saw her point and it was not something I had considered before and I was glad to know it.  But at the time, I remember thinking, I DO think Anthony is lucky to have us as his parents.  I used to think all the time when he was little that I was lucky that I stayed home with him, because he would never make it in a daycare.  I thought, I LOVE him and I still go crazy with him screaming at me all day, what would it be like for someone that didn't love him? 

In this post, the author talks about how, you know, they are just like every other family.  They go out to eat, and to movies, and her son has hopes and dreams, etc. etc.  I want to say, maybe that's because your son DOESN'T HAVE AUTISM?  MAYBE?  We don't go to the movies, or out to eat very often.  We are lucky that Anthony has gone on some outings with school this year, so he did see his first movie, but we have never taken him to the movies.  We can't count enough on Anthony's behavior (and Maria's and Veronica's and probably mine too) to just go out, without a care.

I read an article recently about a man who beat up a father of an autistic child in an Olive Garden, because the guy's kid was too noisy.  And probably too autistic.  I wonder if it's okay to say that Anthony would be UNFORTUNATE to have a jackass like that as his father? 

I see kids that Anthony goes to his public school with who are extremely misunderstood by their parents.  I think (and say) all the time that Mike and I are lucky that we have the education that we do, the intelligence that we do, the faith in God that we do, because I don't know how we could get through these years without it.  Anthony went to school with a boy whose mother used to give him all his medication for the day if he was "bad" in the morning.  Then the boy would vomit as soon as he got to school.  I think Anthony is lucky that I don't do that.  We can say that, right? 

I think about the blogger at this conference who said that she felt like she 'picked a four leaf clover' the day her (autistic) son was born'.  I think this is a lovely sentiment, and I share it.  I almost think it goes without saying, about all three of my kids.  Who doesn't feel this way?  Who thinks, 'boy, I really drew the short straw with THIS one?' about their CHILD?

I can't even remember if anyone has ever said to me that Anthony was fortunate to have me, they probably have.  It didn't occur to me to take offense when someone was saying something nice to me.  Listen, I get mad at people ALL THE TIME, but even I am not so into taking offense at every freaking thing that I'm going to get mad when someone says my son is lucky to have me for a mother.  I think he's lucky, I think they're all lucky.  And even if they're not lucky, they're destined to have me for a mother.  I do believe that God gave me all these kids, so it doesn't offend me if someone says that.  I guess if I didn't think God had anything to do with it, it might bug me, but man.  People say stuff to me ALL THE TIME that I think is NONSENSE and I don't make RULES about it. 

For example, I think any mother who stays at home with their little kids is full of GARBAGE if she says how great it is.  I think women who go on and on about pregnancy being so great are LYING LIARS.  But I'm not DEMANDING people stop.  Because it's just my opinion.  Why does it have to be that just because YOU think something, it has to be TRUE? 

Update

Things are going along with us.  Anthony is having about the same time he normally does - some tantrums, some happiness, some sleep, some tearing the hell out of his room.  He got a hold of a package of wipes the night before last and - well, there were a lot of wipes thrown around the room, is what I'm saying.  I went in to get him and I saw this white stuff all over and I was so afraid it was his diaper, I didn't even care about the waste of all those wipes! 

He has been coming home on Friday afternoons for four weeks now, it's going pretty well.  We are going to start doing some outings, maybe the zoo, the museum, etc., but we are waiting for some cooler weather.  This weather is exhausting and ridiculous, there has been no break in it, I think is the problem.  I can't take them to the zoo at 2:00 or 3:00 in the afternoon when it's 95, I just can't.  It seems cruel!

I went to his meeting at his school here recently, it was great.  He works with this one therapist Pam, from the beginning they've worked together, and she is wonderful.  She puts up with exactly NO nonsense from him, but she seems to really care about him and he loves her.  His successes are her successes and that's just how I want anyone who works with him to feel. 

I am reading this book, and it's kind of depressing.  This woman's son has autism and I saw Autism, The Musical, and he seemed pretty profoundly affected to me.  I am always on the lookout for children who seem as autistic as Anthony.  But I'm reading this book and he's READING and DOING MATH and SLEEPING all night and I just - it feels like we will never get there.  Also, it seems like every damned book I read about someone with autism, they are the only child and the mother can put EVERYTHING into their one child's life and I just - can't.  So anyway, I think maybe I'll delve into a nice cheesy novel next and lay off the autism reading.  :) 

Never

This has never happened, needless to say. Anthony went swimming (!) today on a school trip and he has been wiped out. He lay down on the couch and Maria came in from our pool, naked of course and filthy, and joined him. They laid there for quite a while, like ten minutes! Anthony! Next to Maria! It was very exciting.

This is a hard week on us, Mike is away for the week and Mike and I were both gone this weekend. So Veronica is never anywhere but under my armpit, and Maria keeps saying "Daddy's at WORK?", like, COME ON LADY, how am I supposed to believe he's ALWAYS at WORK? Anthony is largely unaffected. :)

I had his meeting at school today and I think he is doing well. I was telling his new case manager and speech therapist that he hasn't always been the way that he is right now. I was trying to tell them that he used to be a very happy, sunshiney person all the time. We were talking about how to get him to do imitation and I was telling them that he used to sing and dance all the time and, of course, like the jackass that I am, I got a little overwhelmed and started to cry. I'm sure it's not anything that they haven't seen, but it is mortifying just the same. I'm just tired, I wanted to tell them, I'm fine! I'm not the nutball that I appear to be! But I think people that are crazy probably go around saying "I'm not really like this", so I just said I was sorry and let that be that.