I have always felt like I was a fairly on-top-of-it person. I could be counted on to see what needed to be done and do it. I could be counted on to follow through. I could see the obvious and move on it. And yet, lately, all the little things have been evading me. The littlest things I need to remember are suddenly just gone. Poof. I can't remember, or I remember a second too late. Just quick enough to realize I've forgotten it once I can't do much about it. And now, it feels like I've been missing the BIG obvious. Sooo, I need to use a Lifeline.
My phone-a-friend. Hey Kathryn, can ya call me? (Or can I reach you at the same number from when you guys were in the ward? I might still have an old list.)
Basically, it hit me tonight--hence the sitting up posting at 4 am--that I think Michael is having a big regression. He's doing wonderfully in school and is considered a model student there both in academics and with befriending his peers, but at home there have been struggles. He is still the kind, wonderful, loving, amazing boy that he always is, but everything seems harder for him. Things that used to be no big deal are a really big deal lately.
Getting past compulsions and reasoning with Michael has been harder. He wants to understand, but yet, he is easily upset and has a hard time seeing that he's not alone in his struggles. He is wandering away a lot more, but it almost seems like he's surprised by it too. I don't even know how to explain it. It doesn't seem like it is a conscious choice on his part. He just seems really disconnected in a lot of ways. This is just a small sampling.
And the big one--the one I think is causing all of this--his food aversions. He has almost nothing he'll eat lately. Things that we used to rely on for basic nourishment are just off the table, so to speak. Even foods he'll eat one day are refused the next with amazing vigor. I'm literally at my wit's end on this one. Food has always, always been a major issue with him. It has taken all my creativity, and yet, I feel like I am failing. Big time. As he stood up there with his church class, he was almost a head shorter than some of the boys. He was in the upper-90th percentile as a baby and toddler! And now he is so small and skinny. I know it is because he just is not consuming the nutrients he needs. And yet, never has the old adage "You can lead a horse to water, but you can't make him drink" rung SO true to me. I can prepare all the food in the world and I can tempt him all I want, but in the end, he has to eat it himself. Lately, it is happening less and less. I know I can't make it a battleground, because he would happily starve if I made that an option, but at this rate, it all feels like it's going to that end anyway.
Its not all doom and gloom. He's an excellent brother. He and Hannah are really best buddies and he watches out for McKay and likes to try and be a good example and almost a mentor for him. He is so kind and protective of Ella and Garrett and plays with them such a lot. They both gain so much for his attention. He has friends from his school class that have been coming over to play and those have been really successful interactions. He loves Scouts. He did amazingly in the Primary Program yesterday. He does great in school. He wants to succeed. All of those can't be discounted. But for some reason, it all seems so much harder for him right now. I mean things are always harder for him than the average bear. Its a little like he's always riding a bike up a hill when his peers are going on flat ground. But lately it is like riding up a hill backwards with his eyes shut. I also really want to reitterate that it is not a defiant thing. He seems just as bewildered as the rest of us.
I'm just feeling so defeated tonight. I need some Alix stories and your insight, Kathryn, on this whole "growing up Autistic and successful" business. I'm spinning my wheels. I don't know what to do to help right now. If anything, my frusteration is creeping to the surface and that won't help anything. My creativity is exhausted and I'm out of good ideas for the moment, and yet I can't fail right now. Michael really needs me.
And actually this Lifeline request goes to any of you who have any ideas. I know a lot of you have experience with Michael and see him in different facets of his life and know how he's doing probably better than I do in those areas. I don't see him while he's in primary, or at scouts, or playing at your house, etc.
Oh, and if I win the million dollars, I'll split it with you all, ok?
10 comments:
Rachel,
First, I will be praying for the peace of the spirit to be with you as you find ways to help Michael. I just wanted to let you know that even kids that don't have autism struggle at times with things. Kylie has periods of time where it just seems like life got a whole lot harder for her. So, don't be too discouraged. Kids are just hard, regardless.
I don't know what motivates Michael, but perhaps if he likes charting things or doing experiments..maybe you could let him be more incharge of his diet. Have him come help you prepare dinner in a creative way..have him figuar out calories in some food, or let him weigh it for fun...let him measure ingredients...perhaps even let him wear safty glasses and pertend he's a scientist. You could talk about the scientfic method and how at the end of the cooking he has to try out the product to get the information necessary....
You might have tried this already, but it seems like my kids always do things they don't want too better when I let them pretend..or figuar things out themselves.
You could also talk to him about being an example for the older kids and perhads help them eat better by him eating.
Hang in there. I know the Lord didn't give you these situations to figuar out on your own. He'll be with you.
I too felt Michael did a WONDERFUL job yesterday both in the program as well as with his talk. He's a wonderful reader. I love to listen to him because he reads with a lot of enthusiasm and it's never boring to hear him read.
I have a sister who has an 18-year-old son with Autism and she may have had this problem so I'll be contacting her to see if she has any words of wisdom and I'll get back with you.
I wish I had advice of suggestions, but I will pray for you and Michael. I know how creative you've been with getting nutritious food into Michael, so I don't know if I could think of anything better. Does he like those Pediasure shakes or something similar with lots of calories?
I have no advice - just wanted to offer a little support. I know that I've never met Michael, but from all that I've heard of him, he seems like a gentle soul. And you, Rachel, are a remarkable mother. God gave you your kids for a reason - because he knew that at 4am you would have these realizations and act on them.
Good luck. Praying that ideas and solutions will come to you soon!
I know it is really hard to watch your child doing or not doing some things that we feel are needed, and feel totally helpless with them. Even though Michael doesn't appear to be eating, he must be getting some things because he is active, responsive and has good skin color and is not listless, dull-eyed like children who do are literall starving. I wouldn't worry about the size difference, as children grow at different rates, and I don't feel you can blame this on nutrition. I don't know about the wandering--if this is just a stage with the autism or what. I do know you are a very caring and loving mother, and you do an amazing job taking care of all your little ones. You need to not be so hard on yourself and tip your scales with all the positives that you do and have done.
(I had also put your name in the temple when I was there Saturday.) I love you and pray for you. Mom & Grandma:)
I've been such a bad blogger. I've been reading but had no time to comment. I don't have experience with autism but I know how it is to worry about a child. You are a good mom.
Does Michael respond differently when someone brings you food/treats/bread (uh, hello Jenny - swap you some Muddy Buddies or Banana Cream Pie for some bread??) If he does why don't you make food, take it to a neighbor and have the neighbor drop it off when Michael is home? I like Melanie's suggestions. Measuring, helping, marking off the different food groups, etc.
My nephew has autism but it's a very different experience with my sis-in-law. I'll have her read your blog and post any suggestions she may have.
Good luck. You and your family will be blessed.
Michael is, oddly enough, a very enthusiastic cook. He LOVES to cook. But he won't eat a bite when he is done cooking. (Never trust a skinny chef, eh? ;) )
A lot of the food issues seem to stem from the textures of food. He generally prefers bland, dry foods that are colorless. Breads, cereals, crackers, etc.
He does certainly have a sweet tooth, although it is not universal. No chocolate, no cakes (just the icing), SOME kinds of cookies, and Nancy...NO PIE, can you believe this? He'd rather have lollipops or Skittles or Starburst, or chocolate chip cookies. He's pretty particular.
He's not eaten meat really ever. In fact, minus the milk he'll drink, he is a vegan, pretty much.
I am thinking about maybe getting him a set of baking stuff for Christmas (along with a chemistry set and a fingerprint set), as maybe we can use that as a springboard.
I really appreciate all the ideas and advice.
Yesterday Michael got up very early and was calm and awake, so we talked about how he needed to eat "Sportacus food" (he occationally watches that show and Sportacus is a good example of healthy eating and excercise) so that he could grow strong and be healthy and have a clear mind. I also told him about how I didn't like zucchini as a little girl, but I liked to grow it in my garden since it got so big, and so I kept trying it and now I really really like it. He was intrigued that he could grow to like food.
He did drink some Carnation Instant Breakfast for the last two days before school and he had a waffle yesterday. Sometimes he just loses his whole hunger response. Like he can't feel he is hungry. So eating helps it come back, actually. When he goes for long periods without eating, it really starts a spiral.
Thanks for all of your kind words and ideas. I know we need them all. And most especially, thank you for your love and prayers. I KNOW we need those.
So I just spoke with my sister and she said her 18-yr-old has been eating the same lunch since he was 3. Can you believe that, 15 years?!!! She used to worry that he wasn't getting a variety but the meal he does eat is nutritious so she doesn't worry about it anymore. Is there maybe a handful of things that are somewhat nutritious that he can just eat over and over? Also, maybe try freezing nutrituous stuff (grapes, applesauce, pudding, yogurt is all better frozen in my opinion) I also wonder if there's more to it. Have you talked to his pediatrician? I can't remember if you said that in his post. If Nancy's idea sounds like it might work, just let us know and I'm sure we could coordinate bringing you guys stuff to eat, as our "present" to Michael. :) Also, my SIL had a problem with her daughter eating much but she loved bread also so she fed her all kinds of different breads a muffins. If we need to go on a hunt for you for bland recipes for food with very smooth textures, let us know.
Sweet Rachel!! What a precious mom you are. Call me anytime - same # as on your ward map.
And, yes, this too shall pass. :) Michael is SO Alix!
A few months ago, Katie D. did an enrichment night on healthy foods. She makes a bread that she puts all kinds of stuff in. I will look for the recipes if you're interested or you could just call her. Jonathan and I also have problems with certain food textures and especially messiness. You'd think as an adult that I could get over that, but I can't. Like someone else mentioned, we just find the healthy things we do like and eat those over and over. It's not very exciting, but it works.
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