Tuesday, March 30, 2010

Probably Braying

Oh this kid can make some noise! My favorite is when he comes up behind me when I am nursing, pulls up my shirt, pulls up his shirt, rubs his belly on my back and then, with the final insult, BRAYS IN MY EAR. He was outside in this picture, last night, which he seems to love. I read this great blog about a woman whose son is autistic and has a lot of sensory issues, like Anthony, but he is 12. Anyway, she is in NJ (the lucky duck) and she takes him to the beach a lot. He loves the wind and surf. I think Anthony likes to be out in the elements too, he likes the constant push on his face. Then he is really unhappy when he comes in, but you can't have it all. I told Mike last night, I wish there was a way to put a fan in his room but there just isn't. He would tear it down so fast it would make my head spin. He's home today, on spring break from his preschool, so just today. I am grateful that it's just one day and also that it's nice out and also that my sister is coming over today.

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Saturday, March 20, 2010

Emo Anthony

Eating blueberries and thinking about life. We went to this Autism Expo today, just me and Anthony, which is always fun. He was so good but I was helped out by the fact that there was one booth that had lollipops, so that kept him pretty happy. We saw the booth from his school, and two of his three therapists, Heather and Kyle. He was a little weirded out by the fact that he was seeing them on the weekend but he seemed happy and said HI. The expo was kind of a bust, for me. They had a lot of chiropractors there (ugh) and financial planners. I was walking by one and this woman said to the guy "What do you do?" and he said "I take care of the questions that keep you up at night". Riiiiight. Because HE knows her so well, we all have kids with autism so the exact same things keep us up at night, and we need HIM and his HELP. Whatever. He didn't even have lollipops! :) I saw some moms that I know and it was fun but man it was crowded, lots of tables in a too small space, which seems DUMB for a place that is going to be filled with kids with autism, who can be al ittle ticky about a crowd. BUT I'm glad I went and I bought a book and Anthony and I had a fun outing, so I'll take it.
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Friday, March 19, 2010


He licks his lips a lot, can you see how he's all red under his bottom lip? I have been trying to put balm on it but he always wipes it off, very solemnly, the minute I put it on him. He leans forward and wipes his mouth on my shirt. That'll show me, I suppose. I'm hoping when the weather gets warmer he'll stop. Isn't he gorgeous, though? He had music today at school, which he loves. I guess he loves it so much now that he's been kind of whiny when it stops. It's hard to do anything for these kids because they just want to do it to death and then you find yourself sorry that you introduced the thing they like in the first place!
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Long week. Anthony has been sort of congested this week, we think maybe he has allergies? I will never give him allergy medicine though, or anything that messes with his sleep!

I went to an Autism support group this week and I met some nice women, including a woman I used to work with a million years ago. They gave out these cards, though, that I didn't understand. On one side it said "MY CHILD HAS AUTISM, he is not spoiled or bad". On the other side, it had these 'facts' about Autism, the first one of which was that it was a devestating neurological disorder. Devestating? Really? I can think of things that happen to your child that are devestating, but this is not one of them. Not to me, anyway.
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Friday, March 12, 2010


It's a good thing he's cute, if his new thing is going to be to take off his clothes and pee all over hisbed and floor and blanket every few nights.
A damned good thing.
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Wednesday, March 10, 2010

Tuesday, Outside

Thank God it's warmer out. Anthony loves to be outside, I feel like he eats and sleeps better, too, when he can get outside a little. Not that I am talking about how he sleeps, because I am NOT. Mike went to our monthly-ish meeting at A's school today. They are working on a million little things with him, he's doing well but of course it's all too SLOW for my taste. We are really eager to teach Anthony how to SPIT, which I know is gross, but we brush his teeth with toothpaste and flouride, and I just hate the thought of him injesting all that flouride, but what can you do? We have to brush his teeth. I don't ever want him to have to have another cavity filled, ever. :)
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Monday, March 08, 2010


Ugh. I just read this article written by a sibling of an autistic brother and it really made me mad, kind of. Well, it didn't make me mad that this woman feels this way, but it did make me mad that she had some advice for parents of typical and autistic children. If Maria or Veronica ever gave me advice like that, I'd smack them, or at the very least give them a withering look.

I don't favor Anthony or put him ahead of the others, but man, if I did, who could blame me? Maybe this writer should spend a little time being HAPPY that she doesn't have such a problem and be grateful to this mother of hers, who she says was very devoted and good to her brother AND to her.

When I was growing up, my brother Larry was sick and my parents took him all over the place, for a long time, to find out what was wrong with him. I can't imagine now that I am grown up to say how hurt my feelings were that my parents took him to the doctor and how dare they and what about me? Honestly.

It's funny - Maria and I were going for a walk today while Anthony was at school. My sister was over so she was staying with the baby, so it was just Maria and me, which is rare. She is so funny, she wants to do exactly what Anthony does and Anthony wants to do some weird stuff! He likes to walk on the walls of people's houses and he likes for me to carry him from wall to wall, with him standing straight up. He likes to run up this one guy's hill and ring his wind chimes and then fall into my arms from the hill when he's finished. It's like even if Anthony's not there, I am still doing all the ticky-walk things he does! It's crazy.

I certainly hope that Maria and Veronica know that we love them just as much as Anthony - it's ridiculous to even think of it that way, how do you not love your kids all the same amount? I also hope that they know that if Anthony needs more attention, he's going to get it, and I don't want to hear any whining about it - now or years later, once they're grown. Sheesh.

In other news, Anthony woke up at 2:00 this morning, went back around 5:00 til 7:30 and is up there now wailing away - not sad, just his usual braying. Go to sleep, Anthony! I wasn't sure if I should go in last night when I heard him but I was SO glad I did when I found him pantsless AND diaperless and covered, soaked, in pee. I changed his sheets and got him dressed again and said good night! And also, Good night nurse!

Sunday, March 07, 2010


Look at all that air!
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He is a little antsy today. I'll be glad when it warms up a little bit, maybe later. He wears that long sleeved sweater and flaps the sleeves around. I told him today I can't wait until it's summer and he is in SHORT SLEEVES. Flap those around, Mister, I told him.
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Sunday Morning, Outside

At the neighbor's house. God help us when someone buys it and moves in there!
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Saturday, March 06, 2010

This picture kills me, a little. He is such a good boy and such a hard worker. When I think what it takes for him to just do regular stuff, it makes me want to wrap him up in cotton and never let one thing happen to him.
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Finally! He loves to be outside, he fell asleep SUPER early tonight, God knows if he'll be up in the night, I hope not. I was singing to him tonight and he put his hands over my mouth. I said 'if you want me to stop singing, you have to say "STOP"', and he said 'STOP!'. Ha!
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Friday, March 05, 2010

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Friday Morning

Does he look really tired here? He wasn't, he had a good nights sleep. I guess it's just kind of an unforgiving light, up there on the island. He had a good day today, even though he was not thrilled that the girls and I dropped him at at school. But he recovered well. I put him to bed tonight for the first time in quite a while and it was so nice. It's so nice to hear him say "Good niiiiight" and "I You".
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Their Faces are so Different Here

You'd think they were on different islands or something, but they're not.
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Monday, March 01, 2010

Article about Autism Acceptance

Hoo boy, this is an interesting (I can't think of a better word, but I wish I could) article. The video that she links to is from a movie that I watched one night, a long time ago, and I seriously was MISERABLE after watching. Every parent in that movie (one produced by those whackos at AutismSpeaks.org) was so, so miserable. It was right after Anthony was diagnosed that I watched it and I thought - I can't do that. I can't live like that. I remember one mom said that her friends would call her and ask her if she wanted to go for a bagel and she said "I can't go for a bagel. I can't do anything". All she could do was care for her autistic child. Another family lived with their inlaws and they all slept on the floor. Another woman lamented how she had a Masters from Harvard Business School and this is how she was spending her time, miserable taking care of her autistic son (who said "I love you" to her during the video and she seemed so taken aback, so happy about it).

I have a Masters too. I still pay back my student loan every month! I'm glad I have a Masters, I'm glad I went to school and worked and had a life before staying at home with my kids. I truly feel like it was only my education that was keeping me from going insane and throwing everyone out the window, those first few months with Anthony. I KNEW I was tired, possibly a little bit depressed, definitely freaked out at how much Anthony screamed and yelled and how he seemed different from every other baby I had ever heard of.

I'm glad I have Anthony! I really don't want him to be cured - cured of what? I wish he talked more, I look forward to when he talks more, and understands more. I look forward to him not getting so frustrated and not crying so much. You know who else I wish talked more? And who I wish understood me better and wouldn't scream at me so much when she doesn't get her way? MARIA. VERONICA. Jeez - this is having children - it can be hard and frustrating and BELIEVE ME I know that sometimes you want to run away and not come back but man. Why is it that people reject the non- perfect child? Is it because of all the testing we can now do on babies in utero? Down Syndrome is going to be a thing of the past, but only because many people will choose to abort their Down Syndrome baby, rather than give birth to a child who will have problems, who will have to go to a special school, who may not be able to live on their own as an adult.

I gave birth to a perfectly HEALTHY baby, he had the highest APGAR you could get. He is still that healthy baby. He is a perfectly healthy person. I think he is very intelligent. He is sweet and happy and kind and cruel and sad and frustrated and - he is everything everyone's else's kids are. He just might like to flap his hands around in front of his face a little more than other kids.

Anthony got accepted to the magnet school where we applied for him for Kindergarten this year. I don't think he'll go this year, but you never know, as my nephew used to like to say. I don't know what the future holds for Anthony but I don't know what the future holds for the other two, either (although I could make a good bet that V will wake up in the night and M will be up really early tomorrow). All I can do, all any of us can do is just try and make it as good as possible. I don't know why everyone doesn't see it that way. I don't know why everyone can't just think like me! Ha!