I”m fried, tired, spent, etc. When does the yelling and perseveration stop??? I am a little shocked by our neighbors. I wonder if it’s a good or bad thing that they don’t respond. Bryan screams so loud sometimes the house shakes. Hmm I guess a good thing. And if they did say anything, I think Earl or I couldn’t be trusted with our response. Time for a much needed break, and I’m happy he’s going to sleepaway on Sunday. So why does that make me feel guilty? I love this boy so fiercely yet get so overwhelmed and frustrated too. He feels it and knows it. He says “i’m sorry” when we point out bad behavior yet he can’t help it sometimes. They say that parents of a child with autism need grief counseling and exhibit behavior like PTSD; they aren’t kidding we are at war a lot. Time to regroup and reenergize. Time to sleep in to 7am!!!
Here it is: so my folks invited us to go to Florence for a week to celebrate my mom’s big birthday which is coming up in January. Isn’t that awesome? So why do I feel bad? Why is everything a thing? Well, they are not including my boys. I love the idea of going to Europe, Earl has never been there before and it is a great offer. The boys aren’t invited. Ok, they are young,but didn’t they take me to Europe when I was 10? There was an elephant in the room, why wasn’t anyone acknowledging this? I wish they would’ve just said, no we can’t take Bryan, we can’t handle it, it’ s too much for us, and it won’t work well. Just SAY it, don’t pretend like we don’t know why he isn’t invited. I know their offer is from the heart, and I know they want to give me a break too. I guess it will always sting when it hits in the face that guess what, my kid is not a typical boy, and he can’t do everything. I know the issue is mine, but when does the hurting stop? You go along thinking, hey, things are good, he’s making progress, we got this. Then WHACK guess what, he’s not a typical boy, stop acting like everything is ok. It’s not ok. It sucks and my heart hurts every day that my boy is not perfect. He is warm and smart and sweet, and yes, no one is perfect, but still.
Jason left yesterday for sleepaway camp for the first time. I am so proud of him I can’t stand it. We met 3 boys last week, brothers, that are going to the camp. They live 5 mins away and their mom is one of the nicest women I have met in a really long time. She was so warm and welcoming and the kids were terrific. At the airport Jason held in tears, toughed it out, and gave us a great thumbs up as he walked toward the security line with the other boys. I held in my tears until he couldn’t see us any longer, then I let it out. I cried because I will miss him, because I want to make sure he is safe, because he is just a delicious kid. He is so thoughtful too. After the plane landed the counselor passed around her cell phone to let the kids call home and he was so upbeat on the phone, and so excited to get to camp, we smiled the rest of the day. He asked about Bryan and how he was doing. This morning I saw a photo of him on the camp website, smiling and eating ice cream with a new friend. Seeing that photo really touched my heart. It’s true what they say, a picture is worth a thousand words. This evening we got an email from our friend who owns the camp letting us know how well he is doing, and he said “what a great kid!”” I am over the moon.
Last night I had dinner with one of my cousins, his wife who I adore, and their 4 daughters. What a treat! I mean it was a real lovefest and I must admit I am a sucker for family. One of the best parts of the evening was catching eyes with my cousin and just sharing a warm, knowing smile. We were in an ice cream parlor we used to go to as kids and the smile just said it all. Look at us with our families, we’re lucky, and it’s so hard to believe how quickly the time passes. One of the big reasons I wanted to live here in Fl was to be with family, and nights like last night fill my heart up. My boys were so excited to see the girls and to watch the relationships form over the years is so fulfilling. Bryan had a lot of anxiety at dinner but he was so happy to see the girls that he was able to stay calm and fairly relaxed. He was loving and cuddly and even more delicious than the homemade ice cream. Today the boys had day camp and seemed to really enjoy it. I had lunch with one of my other cousins and that too made me happy. It’s amazing what a good dose of unconditional love can do to lift your spirits.
I am savoring the feeling and doing laundry. Nothing like a warm blanky from the dryer.
My latest irritation with people stems from websites and listservs where allegedly knowledgeable people tell other people what to do. Did anyone ever hear of a suggestion or a recommendation? On the listserv I subscribe to for local autism resources there are people who write in and ask for help on a particular issue for their child. At times it’s as light as do you know of a good OT or did anyone try Dr. X, what did you think? Other times a parent may really be reaching out at a time of desperation, they are faced with a severe behavioral problem, school issue, legal problem etc. It never ceases to amaze me how some of these “know-it-alls” tell parents, oh you need to get your child on the gluten free, casein free diet. Oh your child has toxicity in his blood, you need this or that supplement. Would you take a diagnosis from a doctor who has never seen your kid, done a blood test, etc? I firmly believe that everyone should do exactly what they think is appropriate for their child. Just because you decide to do chelation therapy for your kid, doesn’t mean my kid needs it or it’s what I’m going to do for mine. Can’t we all just support each other and help sift through all the various ideas, therapies, etc? Wouldn’t it be nice for someone to say, hey i believe in biomedical supplements, they worked well for my child, if you are interested in learning more, call me or go see my dr. If all of these “know-it-alls” really did know it all, wouldn’t that be great. The irony, at least to me, is that we strive to have our children with autism seen as individuals yet people want to treat them as a herd. Ok breathe, i feel better.
Jason is going to sleepaway for the first time next saturday. We shipped his trunk yesterday. I have post trunk shipment anxiety-did i forget underwear, socks, etc? Will he have everthing he needs??? The idea of sleepaway makes me both incredibly thrilled and incredibly anxious. I was a wreck going to sleepaway. I was such a little mommy and daddy’s girl that separation anxiety made me have diarrhea and panicked me. He seems to be fairing way better than I did. First of all, he’s half Erwin’s kid and Erwin couldn’t wait to go to sleepaway and Jason’s only going for 3 weeks. I am so excited for him, learning how to take care of himself, making new friends that can last a lifetime. One of my dearest friends I met in summer camp at age 10. We have forged a sister bond that is truly priceless. I hope he can learn some great things and even try a green vegetable.
Last summer Bryan went to a special needs sleepaway camp for 13 days,this year he’s going to the same camp for 19 days. He is excited and i’m not worried since he, and we, know what to expect. Funny how that is, not worried about him but worried about Jason.
We are going to have 10 days without kids. I can’t imagine how that will be, but I know one thing, it will be quiet and there will be a lot less laundry. I know they haven’t even got yet, but I think about the great hugs and kisses I will get when they return and the cute letters I will get from camp. I have moved on from packing and now I’m in search of fun items to send in their care packages.
There are times when nothing else will make you feel better than crying. This week has been tough. I feel like everything is going wrong. I am the worst mom and I feel like I piece of crap. I am yelling and short tempered and I don’t like myself at all. WTF? Why does this happen? I need to break the cycle. I need to dig deeper and figure out what the issues are. Is it lack of sleep? Is it depression? Is it that I feel so bad about myself that every aspect feels like an uphill battle. Well I really need to get a grip. Last night Jason was helping me load photos on a photo frame for my Dad for Father’s Day. He has this habit of touching stuff while you are trying to figure it out and also at times he is not a great listener. We have had what seems like thousands of talks about respecting what mommy and daddy say, listening first, not touching what isn’t yours, blah blah blah, but last night, I seriously lost it. Nice modeling. I know we all go through these episodes but I feel like I am better than this, I deal with a lot, I should be able to keep it in check better. So after I apologized and we made slice and bake cookies, by the way, you don’t really slice them, you scoop them, I felt better that we did something together but worse for eating cookies when all my clothes were tight. I put him to bed, I came downstairs and sobbed, you know the Terms of Endearment kind of sobbing. Don’t feel better. Ugh.