Flexibility

Pretty sure that God feels I need to learn more flexibility.  Our choir is on a new schedule where sometimes we are there for the early part of the service, sometimes just for the later part of the service, and sometimes for both.

On Tuesday, we took Rachel for a checkup with her behavioral pediatrician, then when I picked her up from school on Wednesday, she had signs of an ear infection, so we drove back to the same practice to the acute care area to see another doctor - it's about half an hour drive, and between the trip, the time waiting to see someone and waiting for the prescription, it was 6:20 by the time we got home, with Awana starting at 6:30.  I grabbed a rotisserie chicken and bread at the store, then proceeded to drop the bread on the ground.  I kid you not, I wiped it off, then microwaved it a little at home to kill any germs and ate it, anyway.

Yesterday, I was at the Fair with Rachel and my mom when James texted to say his car was dead.  We've put enough into repairing it that we think it's time to finally replace it.  When we were done at the Fair, we walked back to where I thought I'd left my car, and it wasn't there.  Panicked momentarily, then I started observing my surroundings and I realized that the intersection that I'd noted as the one where I'd parked was actually *not* that one - somehow I misread a sign, I guess!  3 more blocks north while remembering landmarks we'd passed earlier, and we found my car.

We were also at the Fair much longer than I'd planned, so yesterday was just a lost day.  But we were having a good time there and Rachel had a blast going on rides, and none of us felt in a rush to get going.  I decided not to worry about the time and enjoy myself until I got tired.

Today I was on worship team at church.  Since we only had 1 working car, I had to leave between church services to pick up the rest of the family for 2nd service, returning with about 5 minutes to spare.  After church we had lunch, then came back home to change, and Rachel and I went back to church for the first meeting and sing-through of our church's Christmas Dessert musical.  We had to leave partway through to go to the car dealership and see about getting a car.  Turns out the one James had already picked out was sold yesterday.

We had an awful experience there - 2 1/2 hours that were full of questions that took forever to get answered, dishonesty about the price of the cars we were seeing and just a huge waste of time.  We headed back home without purchasing anything.  Thankfully our friend and worship pastor Patrick had offered us the temporary use of an extra car their family has, so we gratefully took them up on the offer so that James can get to work more easily this week and so that we can make it to evening activities.

Ranted about the car dealership experience and got a lot of great referrals for car dealers from my Facebook friends (you're all awesome), plus a specific reference from a friend who has purchased his family's last 3 vehicles from a good friend who is a car salesman with great integrity.  We did a little more searching online to see what we could find, then James contacted the salesman and got a very fast response.  We're hopeful that he'll be able to find us the right fit with a price we're comfortable with.

Tomorrow I may or may not be volunteering at Rachel's school - her teacher emailed me on Friday to see if I could help with a project "next Monday."  I emailed back to ask if that was Monday, 9/24 or Monday, 10/1, but didn't hear back, which surprised me considering how responsive she has been with previous emails.  I'm assuming she's had a very busy weekend.  So I'm just kind of rolling with it and, if I hear from her tomorrow morning, I'm planning on being there preparing some reading assessment kits.

I'd actually rather be here tomorrow morning because the hecticness of these recent days, coupled with having an energy-sapping cold that caused me to take several naps during the mornings last week, has left me feeling an urgent need to get caught up on some dishes that need handwashing, clearing some things I've already sorted off of the dining table, and catching up on the receipts and budget-updating that has accumulated in the past week.  But at the same time, if she needs assistance in that way and I can provide it, I'd like to help.

This week also holds 2 mornings of volunteering at the Book Fair at Rachel's school and a dentist appointment for Rachel on Thursday morning, involving the removal of at least 1 baby tooth to allow an adult tooth the space to grow in the rest of the way.  So volunteering tomorrow morning means I have no full mornings to just get things done, but at least I would have some time here and there during the days to work on getting things caught up that need to be caught up.

All these things caused me to start thinking about flexibility and about how I'm not naturally a flexible person. I hate being flexible.  I hate change, especially when lots of change occurs at once.  Rachel went through getting a new teacher (she's in a school with multiage classrooms and was supposed to have the same one for this year as she did last year, but they had to make changes due to having too many 4/5 students and not enough K/1), moving to a different classroom down the hall, having half the girls in her grade move or change classes and getting a new principal.  I was FLIPPING OUT, but she's actually had a pretty good start to the school year, and her teacher, although very different from last year, is really tender-hearted and, I think, a good match for Rachel this year.  I stressed out about it for much of the summer when stressing out didn't do anything, and it's turning out better than I thought.  I also stressed out about Ben starting an extended day at preschool with more demands on him and more therapy, plus lunch.  He's thriving, just really doing well and coming out happy nearly every day, even when he's tired.

I think God maybe thought I'd learned enough about patience for a while and has moved on teaching me flexibility instead.  I think I'll be learning how to just roll with the punches and to be more laid-back about life in general.  Probably a good lesson for me to learn, but not necessarily fun to be learning it sometimes.

So, that turned long and rambly.  I guess that's what happens when one doesn't write a blog post for months.

Celebrating a Win Today!

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!

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.

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.

Writer's Block...

...is not my problem.  I'm always thinking "I should totally blog about that," but it's at a time when it's not convenient or possible for me to write a post.  Sometimes I even compose a post in my head, but then I fear that the wonderful flow of words I had in my head won't come to me when it's time to actually type those words out.  Or sometimes I *do* try to type them out, and the flow doesn't happen.  But it seems like I need to write more often, even if this just serves as a way for me to keep kind of a record of my life, and see what I was going through, and think about how I've changed.

Life has been so busy for most of the last year, but I feel like we've finally gotten into the new normal groove.  I've gotten to where I'm not only keeping up on regular housework again, I'm starting to really make some inroads in the trouble areas of clutter that have plagued us for far too long.  It's so nice to go through the process of purging, giving things away, throwing out and recycling things we don't need.  It makes me feel good to clear way things and free up more open space, and just make our house more pleasant, homey and usable.  And it's encouraging to me that I've been able to tackle that again after months of feeling like I was just in survival mode, just figuring out what it means to live with autism and manage ADHD.

It's not that life doesn't feel overwhelming on occasion, but that's not how I'm feeling the vast majority of the time.  Life is challenging, but we all have our challenges to handle.  What's been amazing to me, too, is that I spent very little time wallowing in self-pity after I found out how widespread Ben's developmental delays were. For that, I totally give thanks to God, because if I had been told a few years ago what would be happening, I'm sure I'd expect myself to be angry and full of self-pity and sadness for months.  Instead, God has given me the ability to enjoy Ben's small victories and his wonderfully joyful personality, and to be thankful for him, no matter the challenges.

I would say that the feeling has been harder to achieve with Rachel because of the combative nature of her ADHD, but after having been able to manage it through changing our parenting styles, cutting out red dye, altering her schedule and giving her a low dosage of medication to help her better able to control herself, we've been able to enjoy and appreciate her again and see more of the gifted, sensitive and creative girl that she is.  Every day was a battle with her for far too long, and it became such an uphill battle that it was difficult to remember her positives because my mind was too filled with the negative.  That's something I was warned about in a book I was reading ages ago, that parents of children with Oppositional Defiant Disorder tend to carry around negative mental images of their children because of the intensity and frequency of the defiance and how hard that is to take, so they have to consciously think about their good points and replace those negative mental images with positive ones.  That's something I tried to start doing as soon as I read that, but it's become easier now that she's a more pleasant child to be around.  I'm so grateful that we found a behavioral pediatrician with so much insight and wisdom.  He has been tremendously helpful to us, and truly cares about Rachel succeeding and living up to the great potential she has.

I know, too, that God has used both of our children to help me to become a more patient person and someone who is less prone to anger, or at least less prone to pop off in anger, even if I'm upset.  I still have plenty of rough edges, in those areas and others, but God really has been shaping me through them and I'm sure He'll continue to do so.

It's Oh So Quiet

Almost too quiet.  I just got back from dropping off the kids at school for their first day back from Christmas break.  And I actually feel a little sad, which is good, because that means I wasn't so frazzled and tired and stressed that I couldn't wait for school to start up again.   I am, however, glad to be back to a schedule and structure and the chance to run errands by myself or get things done when I can be really productive.  Or just a chance to ride the exercise bike without 17 interruptions.

We had a good morning and the kids were both at school on time.  Ben and I had to wait for a minute or two for the teachers to show up at the dropoff area, which suited him fine, because he did not want to be back at school today.  The biggest issue was the fact that he had to leave his little Fisher-Price girl with me instead of keeping it with him.  That lead to a traumatic separation.  Then he decided that focusing on the zipper of my coat was a good idea.  I think he decided that focusing on the zipper would just make it all go away.

Minor fit when I handed him over, but by the time I drove by to leave the parking lot, he had a smile on his face.  Hopefully he enjoys his time back.

We found out over Christmas break that Ben has been having some issues in the church nursery with being aggressive towards other kids, pulling hair and grabbing at their faces, etc.  Not really sure how to prevent that as we still can't have a conversation with him about appropriate behavior and set down expectations.  We pretty much have to deal with things in the moment.  It would have been if they had kept us informed instead of just dumping it on us that he'd had some problems in the past (including an incident during the Christmas Eve service this year, which lead to us finding out that he'd had other run-ins).

The main thing that comes to mind is that certain things are triggers for him to act out physically - if it's really loud all of a sudden or if a child is crying or screaming, if someone gets in his face, if someone tries to take a toy - but those are things that are difficult if not impossible to prevent in an environment like a church nursery.  He's been doing well at school and I think there's just been one incidence of him trying to hit another child during snack time.  He was removed from snack time and was all done, and that seemed to make enough of an impression on him that it hasn't happened again.

I'm not sure how they prevent aggression at his preschool, which has a mix of developmentally delayed children and typically developing children.  I think I'm going to e-mail his teacher, though, and see if she has any tips that I can pass along.

I really don't like starting out the new year with this kind of stress and anxiety, not knowing if he'll keep up with the behavior and if we'll be told at some point that he can't be in the nursery anymore - or if one of us will always need to be in there with him to monitor things.