Friday, March 9, 2012

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!

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.

Tuesday, February 28, 2012

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.

Tuesday, January 3, 2012

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.

Tuesday, October 25, 2011

Are You Depressed?

For some reason, I got to thinking today about a guy I knew in high school youth group.  After graduation, he married a girl from our youth group who had graduated a year or two before.  She had a daughter from a previous relationship.  They seemed very happy, and though the little girl wasn't his biologically, he doted on her and I don't think he could have loved her more.

But a year or two after they married, he killed himself.  I didn't know Randy all that well, just from youth group events.  I have no idea what might have been happening in his life at the time or what had happened up until that point.  But I can't help wondering if he was in the throes of clinical depression and just couldn't take it anymore.

I experienced that in my freshman year of college, and that's been the worst experience of my life.  I just felt bad all the time and as if there was no hope of ever feeling better, no happiness in my future.  On many days, I simply hoped that my life would end so I could stop feeling so bad.  I never put much thought into suicide, though, because as a Christian, I believed that I would go to hell if I killed myself.

In reading through a book of Q&A from Max Lucado called Max On Life, he had some interesting things to say about that.  Here's part of his answer:


Let's be clear: suicide is the wrong choice. The date of our death is God's to choose, not ours. He gives life, and he takes it. When people orchestrate their own death, they make the wrong choice.

But is the mistake a spiritually fatal one? Do we despair of any hope of their eternal salvation? Are we left with the nightmarish conclusion that heaven holds no place for them?

By no means. For while suicide is the wrong choice, have not we all made wrong choices? And did Christ not come for people like us? Frame their lives rightly. Remember good decisions. Catalog blue-ribbon days. Jesus said, "Come to Me, all you who labor and are heavy laden, and I will give you rest." (Matt. 11:28 NKJV). God does not measure a person by one decision, nor should we.

I appreciated his thoughts on this subject, and pondering it myself, it does make sense that God wouldn't choose this one sin as the unforgivable one, particularly as it is often driven by mental illness.

So how did I come out of my depression?  Basically just by waiting it out and through the support of a friend of mine who was a greater encouragement to me than I think he ever knew.  I didn't recognize what was happening to me, and if anyone else did, they didn't tell me.  It wasn't until several years later, when I read a checklist of symptoms of clinical depression, that I realized what I had experienced and why it felt so hopeless.

I really wish someone had said "Maybe you should go see a doctor or the college health department."  I know that my moods and attitude were evident to some of those around me, although not all.  If you think that someone in your life might be going through depression, please talk to them about it. You may be surprised at how open they are to discussing it, and it might spur them on to get the help that they need to get through it.

So how do you know if you are depressed?  Here are some of the symptoms:


  • Feelings of sadness or unhappiness
  • Irritability or frustration, even over small matters
  • Loss of interest or pleasure in normal activities
  • Insomnia or excessive sleeping
  • Changes in appetite — depression often causes decreased appetite and weight loss, but in some people it causes increased cravings for food and weight gain
  • Agitation or restlessness — for example, pacing, hand-wringing or an inability to sit still
  • Indecisiveness, distractibility and decreased concentration
  • Fatigue, tiredness and loss of energy — even small tasks may seem to require a lot of effort
  • Feelings of worthlessness or guilt, fixating on past failures or blaming yourself when things aren't going right
  • Trouble thinking, concentrating, making decisions and remembering things
  • Frequent thoughts of death, dying or suicide
  • Crying spells for no apparent reason
  • Unexplained physical problems, such as back pain or headaches

I went through a minor depression last year and finally went to a doctor.  It turned out that I had very low levels of vitamin D, and she put me on a supplement that made a world of difference after just a few weeks.  Sometimes it's as simple as that, sometimes it might take counseling or antidepressant medication or other interventions.  But there's no shame in getting help for depression.

If you need help and you don't have insurance or aren't sure where to turn, you can check out the Mental Health Services locator on this web page:
http://store.samhsa.gov/mhlocator

Please don't feel like you have to go through it alone or just wait it out.

Tuesday, September 13, 2011

The Pity Party Never Lasts Long

I found myself recently feeling a little sorry for myself.  Sometimes it's a little tiring having two kids who are not "typical."  It can be draining, emotionally, mentally and physically.  But you know what?  There are definitely worse situations we could be experiencing as parents.  And it seems like whenever I start to feel sorry for myself, I'm reminded that there are others who have much tougher challenges than we do.

We were in Seattle this weekend and visited Mars Hill.  One of the executive pastors was preaching, and he shared about his infant son, who died at the hospital after several months of surgeries and treatment without ever being able to go home.  In fact, they couldn't even hold him much while he was alive because he was hooked up to so many tubes and machines.

Then this morning, I watched part of a show on two people with mysterious medical conditions that cause them to age very slowly.  One was a 40-year-old man and one was a 6-year-old little girl.  The man was able to move independently to an extent, and the little girl needed to be carried everywhere as she's still largely in an infantile state.  I only caught the last third or so of the show, so I didn't see if they were able to communicate much beyond what I saw in the part I did watch, but it appeared that both were mostly in their own worlds and unable to interact very much.

And during both of these times, I realized that I am fortunate.  I have a daughter who is bright and funny, who cares about others and does thoughtful things for people, who likes to be creative and write stories and enjoys music, and who is a delight to be around.  Not always, but frequently!  I have a son who is full of joy and laughter, who has a wicked sense of humor even if he can't tell us jokes yet, who gives wonderful giant tight hugs and holds his arm out for kisses up and down it as he beams a beautiful smile, and who loves his family beyond compare.

I'm thankful that our children don't struggle with serious physical ailments or terminal diseases.  I'm thankful that we can enjoy communicating with them, even if we need to work harder to understand what Ben needs and aren't always successful.  I'm thankful that we have resources available to us - medical specialists and therapists and medication and developmental school programs - especially because I know that not everyone has access to such things, and because we have insurance to pay for those things that cost us money.  I'm thankful for supportive family and friends and for prayer and for the knowledge that God is in control and that He knew exactly what He was doing when He gave us these special children, and when He gave us to them.