Just got back from probably the best therapy session I've ever attended with Ben! I've been frustrated with his lack of progression with language, but today after therapy I realized that we've already come a long way compared to when we started in November, and even more from when we first went to Birth to Three's play group therapy last March.
When we first started at Birth to Three, Ben would flit from one activity to another, never staying longer than a minute or so at any one thing. He rarely played with things functionally but would get frustrated when someone tried to do hand-over-hand with him to help him "complete" a toy or puzzle or to use a toy functionally. We would be there for an hour and a half, and by the time it was over, he was totally fried. He didn't sit very long during the snack period, and usually only because of my presence right behind him, and when we got to circle time at the end, it was really difficult for him to just sit for the 10 minutes of songs and rhymes. He'd fight against it and fuss, and a few times, we just had to leave.
When we started speech therapy in November, Ben again didn't want to stay with one task or toy for very long. When we forced the issue and I would work with him to help him do something, he would get really frustrated and sometimes lash out physically, headbutting or hitting to show his anger. He stopped frequently to ask for juice or a snack, and I would give them to him to appease him.
James took Ben a few times for therapy in the past few months, and he didn't take the diaper bag in with him, and therefore didn't have juice and snacks in the room. And you know what? Ben didn't ask for them. So I stopped taking in his bag, too. Ben asked the first couple of times I did that, and I would just tell him "Later. They're in the car." Sometimes he got upset, sometimes he didn't, but his requests tapered off.
Today, he didn't ask once for juice or a snack. He spent the 40-odd minutes of therapy on only four tasks: playing with a toy where you can attach pieces and push a button to play music and make some circles spin; stacking cardboard blocks; listening to (and doing hand-over-hand motions with) music on a CD player, and blowing up balloons with a pump - the therapist did that and Ben would take the balloons and hold them as the air was let out. He loved that! He was so happy throughout the therapy time, never getting frustrated once, and he showed really good attention to the tasks we were doing and to us. And it felt good.
I realized that I'm waiting for the big moments in language to happen, but I'm forgetting that we've already seen so much progress in his ability to handle frustration with tasks, and in his attention during structured times like therapy. He's less open to that kind of structured play at home, but with more exposure to it here, that may become more fun for him, too. In the toddler nursery at church, they're telling me that he's doing a great job sitting for nearly the whole snack time, and now he rarely steals other kids' Goldfish crackers ;) He's starting to ask for "more" on a more regular basis when he wants something. He's humming along with some of the songs at school during music time and will "sing" things at home ("doo doo dooooo, doo doo doooo"), which is so sweet to hear.
So while I was keeping an eye on the long haul and feeling frustrated, I was forgetting the bigger picture, forgetting to recognize that we've already seen so much progress with his playing skills. It may sound funny to think of someone needing to develop playing skills, but many autistic children don't naturally come by them. Imaginative play is hard for them, since functional play isn't something that they have as a general rule, so it has to be learned in steps. And Ben has also becoming a very happy little boy most of the time. The giant meltdowns are still tough, but we're grateful that he's got such a sweet, loving spirit and that we get so much affection from him!
Just wanted to share a win that I'm celebrating today!
Friday, March 9, 2012
Thursday, March 8, 2012
An (Extremely) Abbreviated Lunch Visit
We visit James at work nearly every Thursday to have lunch with him. It's something that Rachel and I started doing back when James first started to work there in 2006, then Ben joined us in 2008. Now that Rachel is in school all day, it's just Ben and I visiting most weeks when it's not the holidays or summer.
It's a little more challenging with Ben than it was with Rachel. She was more self-sufficient at an early age in terms of feeding herself and even in how much she was able to talk with us. Ben, although nearing 4 years old, is delayed in most developmental areas and still does not have a lot of language, due to being on the autism spectrum. He also can get overwhelmed quickly by loud noise, like outbursts of laughter or lots of people talking at the same time. He gets tired out from school or from staying awake late in his bed and then not getting enough sleep. Sometimes he just plain doesn't feel good, but he doesn't have the words to tell us that.
Today I picked Ben up from preschool, and he seemed just fine. He walked all the way to the car with me, instead of asking me to pick him up and carry him there, which is something we've had to work on and an area where we do not always have success. He fussed when I was buckling him into his car seat, but once he had a couple of small toys and his sippy cup, he was fine for the drive.
We arrived there and James met us at the car, and we started to unload the stuff we needed for lunch. When it was time for James to get Ben out of his seat, however, he got really upset and started to flail around like he was trying to throw himself out of James' arms. He calmed down and walked with James to the building. We signed in and went to the cafeteria, and while we were getting Ben's booster seat set up and the food out, it hit the fan. Total meltdown. Sometimes when that happens, we're able to find a food he wants and he'll calm down enough to start eating it, then he's fine.
Today was not one of those days. We tried for maybe 2 minutes to see if we could get him to calm down and eat something. Then I got him out of his chair and walked with him for a minute, talking to him. He was calmer, but he just was not at all interested in sitting down and having lunch. Finally, we buckled him into his stroller and I fled the room while James cleaned up our things. If it had been a little bit warmer at lunchtime, I would have suggested trying again outside, since no one else was out there and since he might be calmer with interesting things to look at and a quieter environment. I thought it was a little chilly for that, though, and he just seemed done. So we went back to the car, James got the things for his lunch, and Ben and I headed back home.
It's really disappointing when that happens. I think we've had to abandon lunch 2 or 3 times before this. I'm glad that he's able to handle it most weeks, but I think that sometimes he's just out of gas at this point in his week, after 4 mornings of preschool. And then sometimes it's simply not a good day for him, period.
It's at times like this when I so wished he could communicate with us more and tell us what's upsetting him. It's difficult to try to figure out if there's anything you can do to improve the situation when your child can't help guide you.
Tuesday, March 6, 2012
Going Dye Free
Last year, when we were in the throes of all kinds of behavioral problems with Rachel and were just about to start seeking medical help from a specialist, I started reading up on red dye 40 and how it affected many children with ADHD. Not only were there countless stories of those with ADHD displaying increased emotional reactions, anger and physical aggression (check, check and check) after ingesting red dye 40, but there were even parents who said that their non-ADHD children would display these kinds of behaviors after having something with the dye.
I had fought against modifying our diets because it seemed overwhelming to take that on when we were just struggling parentally some days to keep our heads above the water. But with story after story of people seeing the same behaviors in their children that we were seeing in Rachel, and seeing them dramatically improve after removing red dye 40 from their diets, I decided I needed to give it a try.
Red dye 40 hides in some sneaky places. It's in obvious things, like Jolly Ranchers and jelly beans and drink mixes like Kool Aid and Strawberry Quik. But it's also in things like some canned vanilla frostings (yes, vanilla), many chocolate cake mixes, some instant puddings, Nacho Cheese and Cool Ranch Doritos, Flamin' Hot Cheetos and other places that might not be so obvious to someone looking to eliminate it. All M&Ms have red dye 40, too, and not just the red ones.
The change in her seemed somewhat gradual, but our behavioral pediatrician told us recently that chemical dyes can take up to 6 weeks to leave the body, so that is probably why it seemed to be a gradual improvement in her. We also started to have regular appointments with the behavioral pediatrician that helped us to understand how Rachel ticked and how we could be the best parents we could be, and we noticed improvements in our own behavior as well! Eventually, the doctor recommended that we put her on a low dosage of ADHD medication to enable her to have more self-control and improve her focus for school and at home, and that was another piece of the puzzle that together has helped Rachel to be so much more successful than she was capable of being before.
At first, it was a pain in the rear to have to start reading all the labels so carefully. And it was no picnic to have to tell Rachel that there were a number of things she couldn't have any more. She had to miss out on some treats at school, and I've provided things for holiday parties to make sure that there were items she could eat no matter what others brought. She would still have things with the dye in it when she was at school or at birthday parties, or sometimes at church, and I could instantly tell that she'd had it.
Just before Valentine's Day this year, I decided to go completely dye-free for the kids, and nearly completely for James and me. There is a lot of anecdotal evidence that the removal of dyes benefits kids with ADHD and autism, and having one of each in the house makes this a step that seems quite logical. Now that I've been reading labels for the better part of a year, it's a lot less overwhelming to read them for other dyes, too, and not just red dye 40.
Valentine's Day ended up being rough. When she got home from school and found out she had to surrender most of the candy she'd received in the class Valentine exchange, it hit the fan. She was so upset, and it just kept getting worse and worse to the point that she had some consequences applied and still could not reign it in. It got so bad that it was obvious her behavior was no longer within her own control, and it definitely seemed like a red dye 40 response. But when I asked her what she ate at school, she said it was all healthy stuff. They had a Heart Healthy Breakfast instead of a sugar-themed party, and she had fruit and yogurt and a muffin. Seems harmless, right?
A week later, she showed me the wrapper from the GoGurt that she had ferreted away in her jacket pocket. I looked up the ingredients online, and that flavor? Had red dye 40 in it. In freaking yogurt. Because yogurt *must* be pink to taste good, right? All of a sudden, that afternoon and evening made much more sense to me.
Oh, and even though I've been reading labels for the past 11 months, I still screw up. I found out a few weeks ago that the Welch's White Grape Cherry Juice that I'd been giving Rachel every morning for several weeks with her medication had red dye 40 in it. So while the medication was trying to help even her out and focus better, the red dye was winding her up and making it hard for her to control herself and to concentrate on what she was doing. Poor girl! We're back on track now and are so relieved we figured out why her behavior issues seemed to be worsening again.
All that to say that I am a believer in the effects that chemical dyes can have on people, children in particular. The dyes are unnecessary, and I wish that companies would remove them from the products they sell in the U.S., just as they have done for those they sell in Europe. Rachel asked me tonight if she can write letters to some of the companies that make things she likes and can no longer have, asking them to start using natural colors in their products so that she can have them again. I told her absolutely and that we could make a list and start writing to them. They need to hear from consumers and understand that their choices for ingredients make a difference to people.
I had fought against modifying our diets because it seemed overwhelming to take that on when we were just struggling parentally some days to keep our heads above the water. But with story after story of people seeing the same behaviors in their children that we were seeing in Rachel, and seeing them dramatically improve after removing red dye 40 from their diets, I decided I needed to give it a try.
Red dye 40 hides in some sneaky places. It's in obvious things, like Jolly Ranchers and jelly beans and drink mixes like Kool Aid and Strawberry Quik. But it's also in things like some canned vanilla frostings (yes, vanilla), many chocolate cake mixes, some instant puddings, Nacho Cheese and Cool Ranch Doritos, Flamin' Hot Cheetos and other places that might not be so obvious to someone looking to eliminate it. All M&Ms have red dye 40, too, and not just the red ones.
The change in her seemed somewhat gradual, but our behavioral pediatrician told us recently that chemical dyes can take up to 6 weeks to leave the body, so that is probably why it seemed to be a gradual improvement in her. We also started to have regular appointments with the behavioral pediatrician that helped us to understand how Rachel ticked and how we could be the best parents we could be, and we noticed improvements in our own behavior as well! Eventually, the doctor recommended that we put her on a low dosage of ADHD medication to enable her to have more self-control and improve her focus for school and at home, and that was another piece of the puzzle that together has helped Rachel to be so much more successful than she was capable of being before.
At first, it was a pain in the rear to have to start reading all the labels so carefully. And it was no picnic to have to tell Rachel that there were a number of things she couldn't have any more. She had to miss out on some treats at school, and I've provided things for holiday parties to make sure that there were items she could eat no matter what others brought. She would still have things with the dye in it when she was at school or at birthday parties, or sometimes at church, and I could instantly tell that she'd had it.
Just before Valentine's Day this year, I decided to go completely dye-free for the kids, and nearly completely for James and me. There is a lot of anecdotal evidence that the removal of dyes benefits kids with ADHD and autism, and having one of each in the house makes this a step that seems quite logical. Now that I've been reading labels for the better part of a year, it's a lot less overwhelming to read them for other dyes, too, and not just red dye 40.
Valentine's Day ended up being rough. When she got home from school and found out she had to surrender most of the candy she'd received in the class Valentine exchange, it hit the fan. She was so upset, and it just kept getting worse and worse to the point that she had some consequences applied and still could not reign it in. It got so bad that it was obvious her behavior was no longer within her own control, and it definitely seemed like a red dye 40 response. But when I asked her what she ate at school, she said it was all healthy stuff. They had a Heart Healthy Breakfast instead of a sugar-themed party, and she had fruit and yogurt and a muffin. Seems harmless, right?
A week later, she showed me the wrapper from the GoGurt that she had ferreted away in her jacket pocket. I looked up the ingredients online, and that flavor? Had red dye 40 in it. In freaking yogurt. Because yogurt *must* be pink to taste good, right? All of a sudden, that afternoon and evening made much more sense to me.
Oh, and even though I've been reading labels for the past 11 months, I still screw up. I found out a few weeks ago that the Welch's White Grape Cherry Juice that I'd been giving Rachel every morning for several weeks with her medication had red dye 40 in it. So while the medication was trying to help even her out and focus better, the red dye was winding her up and making it hard for her to control herself and to concentrate on what she was doing. Poor girl! We're back on track now and are so relieved we figured out why her behavior issues seemed to be worsening again.
All that to say that I am a believer in the effects that chemical dyes can have on people, children in particular. The dyes are unnecessary, and I wish that companies would remove them from the products they sell in the U.S., just as they have done for those they sell in Europe. Rachel asked me tonight if she can write letters to some of the companies that make things she likes and can no longer have, asking them to start using natural colors in their products so that she can have them again. I told her absolutely and that we could make a list and start writing to them. They need to hear from consumers and understand that their choices for ingredients make a difference to people.
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