It has been lovely but difficult. The worst bit though has been the catching -up-with-friends-for-meals. Otherwise known as the traditional breaking of bread with friends. We tried it once with HIS godmother. She is wonderful, understanding, and has a boy in between my two. And still doesn't get the FOOD issues...
"You said he eats steak, we have steak..."
Yeah, but it is when it is cooked by HIS Dad, in a kitchen, and even then if there is any dark bits or chewy bits... aah, no.
Then we had dinner with a friend two nights ago. She is very understanding. Her brother has schizophrenia, she lived it. So when he refused to eat the spaghetti bol because it had "too much oregano...", she was amazing. But I was stressed to the max.
SO, at the last leg of our holiday, when I knew limits were getting way beyond stretched, when we had a two or more hour drive there and then another two or more hour drive to here, where we are spending the night, I refused A MEAL with friends... Well, I had really good reasons. I think.
Sadly, because of this they bailed. Even sadder, she is an aide for ASD kids. And my second child's Godmother. We still planned on a couple of hours catch up, just no food involved. Easier, happier, less stressful for all. But somewhere, somehow wires were crossed, or messages mixed, or maybe they just felt we were not doing the right thing by refusing lunch or dinner.
For us it was not a choice, it was the only way we could go without total meltdown. Him and me.
God, this is hard. And impossible to explain to anyone who does not live it.
who rants elsewhere. Frequently.
Totally get this! Sorry they bailed on you but like you said, it's not worth the meltdowns and the follow-up issues until things get back to 'normal'.
ReplyDeleteMost people are so happy to have their kids home for summer vacation. Me? My workload quadruples. If my house isn't in order before the last day of school -- and it usually isn't -- then it doesn't get done until the first day of the new school year.
ReplyDeleteWhen my son was younger, eating out or with family was a nightmare similar to your post. Some family members may not have understood, but they let us get on with it. Others either said or clearly thought, "He'd eat it if he were hungry enough. You're just pandering to him." No explanation got through to them, not even the comeback of, "Would you eat a plateful of wriggling worms if you were hungry enough, or would you refuse? Because that's how he processes that lovely holiday meal you want him to eat."
I don't even want to think about the meltdowns from the schedule changes or from the grandparents, etc., who wanted to hug/kiss/INTERACT with him! The best I can say is that we lived through them and came out on the other side.
Now that my kids are a little older (12 and 10), the food issues aren't as big as they used to be. And since my son's main food source is a certain cereal (Cinnamon Toast Crunch, if you're curious, fortified with 15 vitamins and minerals and with REAL CINNAMON & SUGAR in EVERY BITE), we just take baggies of it wherever we go. If he finds something to eat while out, great. If not, he's got his main meal in a bag.
These days, I don't even try to make him participate in extended family gatherings even though I know I should. He's good for a few turn-takings of conversation, but that's about it. (I've already posted how he got through his cousin's wedding in January!)
Sometimes I get upset, frustrated, angry (pick an adjective) that I just can't enjoy a holiday the way most people do. Sometimes I don't. Either way, I'm grateful this website exists. Also either way, as moms of kids with ASDs, our only real choice is to pull on our big-girl panties and get on with it. :-)
Food, glorious food! Eh. Not so much. Honestly, our situation with the extreme food pickiness has improved. Dining with friends (at a home) seems to be okay, but restaurants? We are SO limited as a cheeseburger (plain) MUST be served. Period.
ReplyDeleteI've lost many a friendships because they did not understand (accept) the uniqueness of our family. Food? Yeah, right. I'm lucky the child almost eats a total of ten items and those ten normally are not made the way he likes them. If there is a Sonic nearby (grilled cheese) then we are ok. If not...meltdown city. Why? Because those that do not understand and say that I'm babying him too much try to force (yes, force) him to eat new foods. Sigh. My life has come down to internet adult interactions (this site, facebook) and my kids. Spending time with the girls? Not happening unless my kids are included. Then that "girl" time isn't all that relaxing anyway and my situation totally blew the concept of the original plans.
ReplyDeleteAs for holidays, summer, etc. My son is attending summer session three days a week. First week and by the fourth day when there was no school....very, very excrutiating. My ears are still ringing. Stress is still redlined. I'm counting down the days for regular session to start again. That's when we will have our sense of normalcy and calmness back.
I'm so sorry. I always have high hopes for vacations and am almost always disappointed with something. Yesterday we took a day trip and it went really pretty well. E kept it together the whole day and was even pleasant, but today he is a mess -- a yelling, screaming, mad at everyone mess.
ReplyDeleteI so get it, too. I love that we can connect like this... We call it "food therapy". He's almost 14, so we've conquered some things: romaine salad (croutons, ranch dressing, no cheese). hamburgers with ketchup only. restaurant chicken sandwiches. hot wings (major breakthrough on the Frank's sauce.) The past year our goal has been to have a veggie every dinner. He's conquered steamed cauliflower, sweet peas, and no more than 3 broccoli spears.
ReplyDeleteAs far as family gatherings...ugh. We've cancelled attendance as these big time required family reunions for the last 6 years. We're talking about 80 people together for a week at a time in one area. Can't work. It just doesn't work for our family, although my daughter would love it. A few understand, most don't. Whatever. My little family comes before my extended family.
I get it.
He is twelve. He is pretty good, considering. But he has his limits, as do I. HE WILL eat the usual junk when on the road (McD's, KFC, Red Rooster) and I always carry his staple lunch: a packet of Saos, a jar of vegemite, margarine. He eats bananas, apples, lots of types of cheese. My friend with the brother was fine when he refused the spag bol... He had some cheese, a banana and ice cream.
ReplyDeleteIt was me who stressed over it, knowing if he was hungry he was hat bit more likely to meltdown.
But I think I have come to the conclusion that from now on meals with adults, fine, but I will feed the kids prior to functions. Easier, they are happier, others will just have to suck it up.
I so get it. We have 5 kids and 2 of them have ASD. The only vacation we take is to my moms on her farm. They cannot handle anything else. Which bites because we live 15 minutes from Disney World! We went once. Every single one of us (including the hubby who has ASD) had meltdowns. Best part was all the stares while we were in line waiting to see Mickey Mouse. No where to turn to leave that line. The stares were awful. The tickets were paid by a well meaning grandpa. NEVER AGAIN!
ReplyDeleteMe, too. We don't even attempt 'traditional' family holidays anymore, after being asked one too many times perhaps we'd like to come late & leave early. It does suck, though, because sometimes it seems that family & close friends; those who we expect to be more understanding of our situation, are the least understanding of all. I do miss my family & old friends that have gone by the wayside, but the ones that have stayed bring more joy than before, because they get it. :-)
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