This winter has been a crazy mix of snow storms, frigid wind chills, mechanical problems, holidays, and lots of days off school. I feel like we have never gotten into a rhythm and we are less than a month from spring break! It is more than enough to make me feel a little crazy.

All in all, things are good, at least moving forward. It has been a huge relief to have left the public school system. We had so many battles with the public school last year, that I was terrified to send my vulnerable Owl there for kindergarten. So we opted for a local parochial school. Although we don't attend the particular church to which the school is connected, they have been very welcoming and inclusive. It is such a small environment that they are able to make accommodations for him in the classroom and keep him safe with his allergies. I pull him out for private therapies (didn't even want to deal with the public school special ed staff for him) and that makes a couple of his days shorter, so he is able to tolerate the full-day program. When issues come up, his teacher calls me and we come up with solutions together.

Herbie, on the other hand, really wanted to stay at the public school. He talked through it with us, what would change in terms of staff and the kids in his classroom, and said he wanted to give it a try. So in the fall, back he went. Right away, I worried if it was a mistake. He got sent home a few different days for throwing up at school and on the bus. He was not sick as soon as he got home, evidenced by his constant running through the house and jumping on the trampoline. He had several instances of collapsing on the floor in the sped room and saying he couldn't go back to class, so I would get called to pick him up. I left lots of messages for his case manager saying he needed some TLC, but all she was willing to work on involved following classroom rules, taking turns, and identifying emotions based on faces. Things he has been covering for 2 years, but it's easy for her to do and she can check off progress on her silly goals of success in 9 out of 10 opportunities to show recognition of emotions. How about what to do when you see someone displaying that emotion? Too hard, she said, as was my request for help in teaching him how to keep himself safe. He's too young for that sort of thing. Really? And to my constant pleas for some TLC to reduce his anxiety, the classroom teacher said the only person qualified to help with that was the school-based counselor, who happens to charge a hefty fee. We did end up paying for that service, and after several sessions, she asked me if we'd ever considered switching schools. Yes, we had, especially on the days when Herbie said he wanted to switch to his brother's school. Shortly after that, the classroom teacher said we should think long and hard about whether he should stay at that school. It became clear that in my son's particular case, his "individual education plan" meant something more like what they threw together to say they were meeting federal requirements, not to actually address his individual needs. I am at a loss to explain how we went from being thrilled with Herbie's school experience back in kindergarten to my son not being able to go to 2nd grade without throwing up, and no staff member there besides his para even caring?

So now I have 2 kids with autism at a tiny parochial school without any special ed resources. What they do have, is a commitment to care for the whole child. Not to refer each component of a child's development over to some other specialist, and then when there is no specialist to address an issue tell me I'm out of luck. The classroom teachers really care about the whole child. I expressed some surprise at this to Herbie's teacher and her response was just as surprised, it's my job, she said. We still have plenty of things to work through with the transition, but we have gone a whole month with no throwing up (yay!). He has gone to school every day that hasn't been cancelled. And on the days that have been cancelled, when we go outside to clear the driveway, my kids play together in the snow, nothing short of a miracle. Owl actually puts on all his snow gear, is able to move around in it, and is not afraid of the snow. The kids play together well (mostly), and when I say to stay where I can see them while I shovel, they actually do. I know plenty of parents just send their kids out to play and then they call for them to come in later, something I have never had the luxury of doing. They probably don't realize what a luxury it is that they have. But I get the extreme pleasure this winter of seeing my kids playing outside independently. I think other special needs parents will realize how incredibly exciting that is for me. Hooray for the rays of sunshine in the midst of our crazy life!

I have had a hard time writing anything very thoughtful lately, not because I have nothing to write about, but because there is just too much, good and bad. Lots of physical therapy for the Owl (which is going well) and an official diagnosis of PDD-NOS (no surprise there), a great conference with the preschool teacher and some ironic recommendations (which perhaps merit a post if I get a chance), the world's worst IEP meeting for Herbie (I'm still getting over that one), a wise woman in my Arc support group bringing me back to reality (if you don't have a support group, I hope you can find one, it makes a world of difference), finally getting a diagnosis of sleep apnea for Herbie and a subsequent tonsillectomy and adenoidectomy (still in recovery), and add on top of that Thanksgiving and Christmas, my kids actually participating in the children's Christmas program at church (awesome!), and then wanting to participate in the Christmas Eve candlelight service by holding their own candles (against my better judgment but all went well), out-of-town visitors, and a few other things. Here we are already more than a week into January and I haven't even thought about it being a new year!

So my resolution is simple in principle, take care of myself. I just made a doctor's appointment for the first time since my almost-5-year-old was born (assuming I can't count flu shots at Walgreens or seeing someone at the walk-in clinic when I had strep). As soon as Herbie feels well enough to go back to school in a few days, I will be exercising on the elliptical trainer in our basement that has been gathering dust. I am going to go out with friends once a month, even if it's just to drink a cup of coffee, and my husband and I just scheduled a babysitter for a long-overdue date night a couple of weeks from now. When I think back to my pre-kid life, when I thought that I was oh-so-busy-with-important-things, it is sort of funny to look at my list above and think that is all I can come up with. But I am going to continue the investment of time in playing with my kids--just playing with no therapy goals sometimes--because that has been good for all of us this past year. So I think this is a do-able resolution, check back with me next year and see how I did!

Our community education department is trialing a new program with high school volunteers to be buddies with kids who need extra support. Special-needs parents probably look at that community education catalog and think, "I wish I could sign my child up for that, but it probably wouldn't go well." I used to get upset about it, then I would realize that my kids don't want to be left in a class without support, so they weren't asking me to sign them up. I didn't worry about it too much. Then came the announcement for the Angry Birds Art class, 4 weekly sessions after school. It sounded right up Herbie's alley! He loves Angry Birds and he loves art. What could be better? In a discussion with some other parents, I commented about how I would love to be able to sign him up. There happened to be someone there who could do something about it who told me to go ahead and register him. I almost wished that I hadn't said anything, I didn't want to set Herbie up for a bad experience. But I went ahead with it, and we got our high school buddy. She has very little experience with kids or special needs, but she has a heart of gold and wants to make this work. It is obviously a high-interest activity, so I am not hugely worried about him not wanting to participate. I mainly wanted him to feel supported and to have an extra set of hands to intervene if he got off track or tried to bolt. And so far, so good! I love seeing his little projects and how excited he is to show them to me. It is awesome that this teenage girl can commit a few hours of her time and make such a huge difference for a child and his family!

It has been six weeks since the Wise Old Owl broke his leg. He initially had a full-leg cast. Then, eleven days ago, he got his cast off and switched to a walking boot. Give it a few days, the orthopedist said, he'll be running around, they always get right back into action. I tried to explain that he had a motor planning disorder and I wasn't so sure, but she was very confident. This is the problem of seeing a specialist who is only looking at one aspect of my child. Although we've been in the facility for an hour and a half, we only get 10 minutes with the orthopedist. All she knows about is bones, not motor planning. So off we were whisked with our walking boot. Eleven days later, he's still not walking.

I've been playing phone tag with the clinic all week. Finally, we got a walker today. I requested it to help him transition from the wheelchair to using his legs again. The nurse on the phone initially sounded concerned that he would need more x-rays and evaluations, kids always walk after getting their casts off. Didn't you hear me say he needed intensive PT to learn how to walk in the first place? Even with absolutely nothing physically wrong with him? She thinks perhaps there is something wrong in how it has healed. Of course I can't say for sure that there is not, but I what I think I really need is someone to help me teach him how to walk. So she says she'll write up orders for the walker so our insurance will cover it, but to call in a week if he's not walking.

So now we have a walker. Who knew they made them so small?? A friend saw it and suggested we put some tennis balls on it, helping me find humor in the midst of my frustration. He seems to like the walker, he managed it pretty well at the library and Walgreens. So we are on the road to re-learning to walk, finally. But I am still wondering, why this huge set-back? He had made such tremendous progress in his motor skills, and now we are back 3 years, or that's what it feels like. I hope the trade-off in improved social skills was worth it. But right now I can't stop thinking that keeping up with all the kids on the playground helps with social skills, too.

Note: I typically leave posts in my draft box for awhile before hitting publish. So after I wrote this, I suddenly found myself humming a song by Sixpence None the Richer - the one called "Trust." It's stuck in my head, probably not by accident. So that is the answer to my worries, He's got it under control. I think I'll go find the CD of that song, which I haven't listened to in years, it's a good one. The song is based on Proverbs 3:5-6:

Trust in the Lord with all your heart,
    and do not lean on your own understanding.
In all your ways acknowledge him,
    and he will make straight your paths.

Do not lean on your own understanding...easier said than done, but here goes.

Right now the Wise Old Owl is in a wheelchair with a broken leg. He is too young to be able to use crutches and needs some way to get around at preschool. It has been interesting to watch the reactions of others when they see him in a wheelchair. Kids always run right up to him and ask what happened. They often want to help him, push the wheelchair for him, etc. There is absolutely no discomfort. He gets lots of loving attention from people everywhere we go. It got me thinking about our comfort level, in general, with people who are disabled. In adults, usually there is some discomfort around an individual who is in a wheelchair or clearly has some sort of developmental disability. I grew up in a school where the special education kids arrived late, stayed out of sight, and left early. So I never learned as a kid how to interact with those who are different, it has come gradually through life experiences. With my kids, I appreciate when people speak to them (instead of me), show respect (instead of pity), and assume they can understand (rather than talking in a sappy voice). I love their inclusion classrooms, where all of the kids are mixed together and taught to get along. There are kids with permanent physical disabilities (unlike my son's temporary wheelchair) and they are part of the class. Young kids don't know any of the labels or medical terms, they just know each kid's name and that is enough. At what point does this acceptance and comfort level go away? Or won't it? I never had this kind of classroom as a child. So is it wishful thinking to hope that the kids who grow up with my kids and the other differently abled kids will just always know them for who they are and not worry about them being different? How wonderful that would be!

I think it is safe to say that parents of special-needs kids have gone through a huge range of emotions from sadness or anger about their child's diagnosis and the struggles that he faces, to joy over the simple things like saying "mama" or eating a new food. We question why our child, why this diagnosis, why don't others have to worry about these things. And then we feel feel intense pride and joy when we see our kid do something awesome or reflect on his heart of gold.

In a video lecture I watched recently, psychologist Ross Greene said that while parents of challenging kids may have more work cut out for them, they also get to go along on the ride with their children. While other parents are enjoying their child's accomplishments--some athletic achievement or winning a student council election or being a great artist, etc.--they are not as involved in the nitty-gritty day-to-day processes of learning any of these kinds of skills. With some encouragement and a good instructor, their kids just take off. In contrast, at our house, there is a lot of time spent on skills such as handwriting and chewing and learning how to introduce oneself to another child, among other things. So when the "sh" sound is properly pronounced for the first time or when one of my children writes his name legibly on a page, these are worthy of celebration. Parents of typical kids could celebrate these things, too, but they probably pass by unmarked because they are expected.

I have gotten to do quite a bit of celebrating with my kids. There are too many milestones to list--taking a vitamin, letting water get in his face in the shower, staying dry at night (every now and then it happens!), learning how to stick his tongue out, sitting still during church, hearing a passing dump truck honk its horn and not having a meltdown, coloring a picture mostly in the lines, alternating feet going up the stairs, playing with another kid at the playground, touching something wet. My husband and I jump around and cheer for these things, buy special treats and give big hugs. We appreciate the complexity of the neurological pathway that had to be formed to accomplish a feat, the anxiety that had to be overcome, the many months of therapy that led to the success. And we get to celebrate! It may sound trivial, but these are really special moments. Kids notice when parents invest time in helping them learn something and they enjoy being congratulated on a job well done.

Growing up, there were a lot of expectations for the kids in my family. Whether it was doing our homework, cleaning our rooms, doing chores, performing to the best of our abilities in extracurriculars, etc., we did it and moved on. Perhaps there was a pat on the back or recognition of something special. We definitely were not ignored or neglected.  But it feels so much different as I raise my own kids. I know them so well. They trust me to know when they need a hand, when it is not obvious to someone else that my son can't bend over to pick up a toy, or when one of them needs to hide his face in my shirt because of a particular smell. They know that I get what their limits are, that if they've had to focus for a long period on something and tolerated loud noises in a crowded place, then they just might need assistance if another challenge arises and their reserves have been used up. They know that I am there for them in the middle of the night. Or that I will help them calm down when someone bumps into them and no one gets why they are crying since they are not hurt. They don't often have to explain their reactions to me, and when they do, they know I am listening. I love the closeness that I have with my kids. I pray that I have the strength to continue to be a good listener and a shoulder to lean as the years pass and the challenges get more complicated.

If things came to them more easily, would I have put in as much effort to understand them? Their gifts, their fears, what makes them tick? It's hard to say, but it is easy to conceive that I might have taken many of their accomplishments for granted. So amidst all of the day-to-day work of raising these complicated kids, we get to celebrate pretty often. While my friends who are parents of typical kids don't get it when I excitedly proclaim that my youngest son took a bite of chocolate pudding, there are others who will jump up and cheer--friends, teachers, therapists, and our church family. And that is another huge blessing in itself, having those special people who can celebrate with us.

I have days where I wonder what I would change about my kids if I could change something. Would I get rid of allergies? Take away speech problems? Anxiety? Motor-planning problems? If I could pick one thing, which would I take away, what is the hardest thing? It's a pointless debate I have in my head, and I've learned to stop before I spend more than 30 seconds thinking about it. I can't choose the challenges my kids have to deal with any more than someone else gets to choose whether they get cancer or lose their job. If I could pick, I wouldn't allow any of these hardships. But the reality in this fallen world is that I don't get to pick. In eternity, the challenges will all be resolved. Until then, I'm on this ride with my kids. They are great travel companions and I am going to enjoy the journey with them.

 

In light of our negative experience with the horse therapy instructor, I have been thinking about how I can approach these types of situations differently. This post has been sitting in my draft folder for many weeks now. I keep looking at it and deleting bits and pieces, softening my words. I really don't want to be terribly negative on this blog. But I also did not expect anyone working with special needs children to display anger or forcefulness in a professional setting. But there it was, the beginning of something ugly that I had to stop.

If anyone else is going through something that is not sitting right with them, then I want to encourage you to speak up. In the last couple of months I keep hearing stories in the news and from people that I meet, about negative experiences with teachers and therapists. A lot of parents seem to question themselves--is that really happening? does it sound worse than it really is? am I over-reacting? maybe they are right? what are the ramifications if I speak up?

One mom I know had a therapist lecture her on her poor parenting. Another had a son verbally bullied by multiple members of the staff at his special-needs school. There are some really awful reports on the news that I wish I hadn't heard. My story is not all that scary, but still definitely upsetting to have my child scolded and shamed by someone who works with special-needs kids every day. It is hard to find safe, non-judgmental places where I can bring my kids and let down my guard. I thought I had found one in the horse farm, but I was wrong. A late-night ER visit for tummy troubles (in hind-sight probably stress related) got me thinking about how to reduce my son's stress level, and it became clear that we needed to be done with horses.

Going forward, I want to always be informed, involved, and ready. When disagreements come up with people in places like school from which we cannot so easily walk away, I want to have a better plan and feel more confident in myself. Here are my main take-aways for myself, what I wish I would have done differently.

I was not at the lesson where the ultimatum was given about saying, "hello." I didn't initially realize the seriousness of her threat. As I was talking with Herbie, he offered that he might whisper a greeting instead of speaking loudly. Since I have most of my free time late at night, I thought I'd shoot off an email to the instructor while I had it on my mind at 11 pm. I simply asked if we could start with whispering, figuring she'd reply that it would be a good place to start. Instead, she called me the next day and it was not a good conversation. She didn't want to talk about it, she wanted to tell me why she was right and why I was wrong. It was going nowhere, so I ended the conversation. I wish that I would have said something like, "for the record, I disagree, but let's talk about it when I see you at the next lesson." In my desire to end a bad conversation, I just tried to be neutral so that I wouldn't start another round of arguing which would prevent me from getting off the phone.

I have always had issues with being heard, I tend to be non-confrontational, not wanting to offend. When it comes to my kids, I can't be like that anymore. That doesn't mean I need to yell and argue. But it does mean that I won't just be polite.

Lesson learned: If the other person is dominating the conversation and I don't want to continue, don't let them assume I am ending the conversation because I agree with them. I will state my disagreement but also state the need to end the conversation and revisit it later.

At the next lesson, our face-to-face conversation was similarly one-sided. I thought I did a little better telling her she was pushing too hard, but she still did not let up on her insistence of a full-voice greeting. I proposed a modification to the format (on the ground instead of in the saddle) and giving it a few weeks to become comfortable. She agreed to the modification but insisted on a vocal greeting on the first try. I knew full well it was a no-go. She was not honestly thinking about my words, and more significantly, she was blaming my son for misbehaving.

She had told me in her own words that he knew exactly what he was doing, that it was one of her pet peeves when someone did not participate in greetings and she had encouraged another girl in the class to get on his case and hold him accountable, thinking that would motivate him. That when he was reprimanded and finally allowed to ask his horse to walk, he impulsively put his reigns up too high so she made him go to the center of the arena until he would apologize. While autism is not an excuse, it is an explanation for challenging behavior and should guide us in how we try to teach skills. Making him ashamed is not the answer.

I knew Herbie would not be coming back. She was too angry, I was too angry. Her comments about how he was "pushing her buttons" and how he could "not be trusted with the reigns" really stung. (Was she saying that she was not capable of making a riding lesson safe for a special needs child?) After lots of thinking, praying, talking, etc., I drafted and edited and re-edited a letter to her. I wanted to get my wording right, say what I wanted to say but not too much. I would not be able to do that in a conversation. So I sent it as an email, expecting that she would probably call me about it. I just wanted to get my thoughts out in writing, that is important to me. Then I drafted a few key things to say in the event that she called, which she did.

One of the first things she said when she called was how she wished I wouldn't use email so much, how I should always call. She kept making comments about how I never talked to her but just sent emails. I tried to remind her that in fact we did talk about this issue on the phone once and in person once, but somehow that was lost on her. She just kept referring to my emails as me not trying to solve the problem, as if the problem would have been solved if we'd talked and I hadn't sent the email. In reality what would have happened if I hadn't sent the email is that I would have been bullied by her and not had the chance to truly articulate my reasons for leaving. So I stood by my emails and said I was happy to follow up with a phone call after an email but I needed to get my thoughts out clearly in the email. She wouldn't let it go and it really irritated me. I wished I had stated in my email something along the lines of "when we talked on the phone and also in person...."

Lesson learned: Document everything--when we talked on the phone, in person, etc. and reference that in subsequent written communications. I can see this being helpful with school IEP issues since there are so many meetings and phone calls and it can be hard to keep it all straight even when it is positive communication.

I had previously assumed that people who work with kids pick up on when strategies are working and when they are not working. If I'm trying to convince one of my kids to do something, and it doesn't work, then I'll try another strategy the next time. That doesn't mean that I never slip into old habits when I'm in the middle of a situation. But if it is a planned discussion, I try to change something to be able to get through to them. In fact, she did not try to think of anything new, because she didn't understand the reason her strategy hadn't worked. She was going with the assumption that he was unmotivated, so in her mind, all that was needed was to be forceful. I am kicking myself for not pointing out to her after that first attempt that she was going about it all wrong. Part of me assumed that she would let it go or if she tried once more that it would sink in that it was not working. Part of me thought maybe he could say, "hi." Nothing in my mind suggested that she would not only stick with it, but get angry and chastise him in front of the group.

Lesson learned: Don't make any assumptions. Ask questions. Speak up.

Herbie is back to his normal fun-loving self, and thoroughly enjoying summer vacation. I intend to give both of my kids more opportunities to give me feedback on their activities and therapies. I will always speak up when something doesn't sit right with me. I will trust my gut instincts. Our family has a lot of goals to work on, we only want to spend our precious time on the ones that are worthwhile. And one that is very worthwhile is having enough unscheduled time for being together and having fun.

So after my last post about the horse therapy, I have been mulling over my thoughts and ideas on lessons learned. But that needs a little (well maybe a lot) more editing. So instead, here is something more positive, an excellent IEP meeting.

As luck would have it, the Wise Old Owl's IEP transition meeting was postponed from early May until late May, scheduled for 2 days after a parents' food allergy support group meeting that I attended. What a great meeting to attend, it was all about preparing for the next school year. So I walked away with a folder full of handouts and sample 504 plan accommodations. (I'll put a few links at the bottom of this post for anyone interested in similar resources.)

The Wise Old Owl will be in his second year of preschool, which will meet at the primary school site, rather than at the early childhood facility where he was this past year. I met with his IEP team to discuss his speech and anxiety issues as well as modifications for his food allergies. (Often, allergy accommodations are in a 504 plan, but since he already had an IEP, the modifications are part of that.)

Anyway, it was fantastic to walk into the meeting and to see that the school nurse had made it. She was able to tell me all kinds of helpful things about the school policies and made me feel like she truly understood the life-threatening nature of food allergies and the worries that I deal with. I handed out several informative flyers I had received at the recent allergy group meeting. The teachers and nurse said, "thanks" enthusiastically, not the polite thanks with an eye-roll that I had been worried about, but a real thanks for the info, we are always learning. We talked through my suggested accommodations and they were on board with almost all of them. (The procedures for the bus were scrapped due to lack of a bus service rep at the meeting, and I still need to call the bus service to find out more about that, but really, if I end up driving him to preschool that is definitely not a problem.)

My favorite accommodation is the one that says the teacher will not include any food items in lesson plans. She was completely on board with that and so in it went!!! What a relief for next year AND down the road it cannot be easily taken out unless there is a good reason. It is a legal document, superseding any elementary school teacher's plans for a gingerbread house. I think my stress level went down about a thousand percent!

Overall, we had lots of great discussion about allergies and how it affects my son's learning in the classroom, how it goes hand in hand with his anxieties. There were certainly a million more things that I would have loved to put in the IEP, but I picked my battles and felt like I needed to put my top priorities on the table first, leave the rest for later to improve my chances of getting the really important ones.

We wrapped up the allergy portion of the meeting, the nurse left, and we then moved on to the rest of the IEP goals. His new SLP will continue the articulation and social language goals, of course. But now that I am a bit wiser, I laid out on the table my expectations for the classroom in general. How I hoped that the general ed teachers would really take the lead and not rely on the SLP so that my son would trust them to help with social interactions. We talked about staff acting as an intermediary since they are more approachable for him, and how they can re-direct his conversation to the kids, recognizing his anxieties and stepping in to help him work through them, helping him with transition to play time with specific suggestions, and just generally playing with kids on the floor (something that surprisingly seemed to never happen in preschool this past year...). Again, it was a great conversation. The lead teacher actual looked a little surprised that I would request some of these things, she commented something to the effect that those were generally things that any preschool teacher should do with any kid. And again, my stress level went down and I breathed a little more easily.

Now it is summer and I am taking a big break from worrying about preschool. When ESY comes along in July, he'll be with the same amazing and trustworthy special ed staff that he has known from the past year. And I am feeling optimistic about his fall classroom. For the moment, it is time to relax, bake some allergen-free cookies, and play at the playground!


For anyone wanting some information on how to communicate with your child's school about allergies and sample accommodations for an IEP or 504 plan, here are a few helpful links that I have found.

Lots of tips, FAQs, and handouts from Kids with Food Allergies (KFA)
Downloadable school guidelines from FAAN
Sample 504 plan
The role of school nurses

We have had a tough few weeks with our once beloved horse therapy facility. I am really at a loss to understand why this happened.

First, a little history. We found out through a teacher about a horse therapy program about 30 minutes away from our house. I read about equine therapy and about this particular farm and was so excited for the potential. We got on the wait list and in March 2011 got a call that we could start lessons. It was completely amazing. I watched the Wise Old Owl go from signing commands to whispering to audibly giving the horse commands. That was a huge deal! I was excited about what good core strengthening exercise it was for him. I loved seeing Herbie paying attention, following multi-step directions, getting lots of good sensory input as he groomed the horse, and grinning from ear to ear when he got to trot. I raved about the place to everyone I knew and made monetary donations beyond the very expensive riding fees. Fast forward a year. We had not been there for a few months for the winter. I was itching to get them back in the saddle. At the first ride, both kids rocked, they did everything perfectly including SMILING AND WAVING TO THE OTHER TWO KIDS IN THE LESSON!!! That was new from last year and I was so amazed. We had a few weeks in a row of awesome rides.

Then the Wise Old Owl actually started saying "hi" to the other kids, and the instructor decided that waving was not enough for Herbie. He needed to say "hi" as well. She prompted him several times and he could not do it. She asked why he would not say "hi" to his friend and he answered that she wasn't his friend. In hindsight, I don't think that was his reason, but her use of the word friend probably made him think to say that. So at home we we talked about how we define a friend and different types of friends and being friendly, etc. I encouraged him to continue smiling and waving. The next week was similar, with much prompting and no greeting. The following week, our babysitter took the kids and the Wise Old Owl was SO excited to show her around the place. However, it was not such a great time for Herbie. He was prompted again to say "hi," and apparently after a long time of awkward discussion he was told the next week he could not ride if he did not cooperate. I spoke on the phone with the instructor, asking her if he could whisper or mouth the words as a first step and she was of the opinion that he was being obstinate and did not budge in her position. She also made some comments about how he got too rowdy with his reigns and he was "pushing her buttons," I sensed a lot of anger, something I had never detected in her before. We were not getting anywhere discussing it over the phone so I ended the conversation.

For several days I tried role playing with Herbie but his anxiety was so evident that I decided not to push it. He stayed home and I took the Owl to the next lesson. I spoke with the instructor in person and tried to plead his case, pointing out that it is in fact incredibly common for kids with autism to have trouble greeting their peers! She kept saying that we just needed to push him, she was clearly not considering his point of view and I was incredibly frustrated. I suggested rewinding, perhaps introducing the idea of doing greetings on the ground (rather than mounted on the horses) and giving him some time to warm up to the idea. She agreed to the on the ground part, but still insisted that he audibly say "hi."

Herbie had been sick all week (painfully constipated, very unusual for him since he eats way more than the recommended 5 servings of fruits & veggies a day) and it all seemed to be stress related. This was the biggest stress for him, so we decided to end it. I felt sad going from absolutely loving the place and envisioning my kids attending there for years to suddenly leaving, especially since the Owl loved it so much. But it needed to be done. So I wrote a letter and after multiple edits to take out my real feelings, sent an email stating that the Owl would come for one more lesson so he could have closure and then we'd be done.

I second-guessed myself a million times. But then the next day, the instructor called, we had a very unpleasant conversation, and it confirmed my decision entirely. I went ahead and sent the Owl with the babysitter for his last lesson, at which they skipped the greetings altogether (to spite me??) and then trotted (Herbie's favorite activity) much much more than usual. The Owl came home practically in tears because he was so sore!! Usually the kids trot two lengths of the arena, and after the first, he will ask not to do the second and she will grant that request. His low muscle tone makes it so hard for him to control his body when he is bouncing up and down on a horse. But apparently this day, she denied his request to walk rather than trot and kept going multiple times around the arena. With his voice cracking, he told me, "Susie made me keep trotting and my butt hurts." The only positive thing to come of that is he no longer is sad to discontinue his lessons, he does not want to go back. Fortunately after 4 days of using the heating pad, he seems to be fine, but my brain is still going a mile a minute thinking of all the things I want to say to her! I am writing this epic blog post instead...

Well, we certainly learned a lot of lessons, which will be another post. Thankfully the end of May was capped off by a fantastic IEP meeting and a lovely Memorial Day weekend.

I have been thinking a lot lately about my kids' behaviors and how we seem to be struggling with the same things day after day. For awhile we will make some headway, sometimes issues even seem to resolve, but they always seem to come back. Well, I'm not really sure if they all come back, but at the moment I feel like they do. Somehow when I'm bogged down in the anxieties of the day, it is just so overwhelming that I convince myself we have been stuck here forever. I'm sure that is not true. But there are definitely some recurring problems that we can't seem to figure out. Like bathroom issues and not peeing all over the floor. I suppose I should remember the past when the pee was in the trash can or the sink or the soap dispenser and be glad that is not happening. But it's still not in the toilet. So have we made progress or haven't we? I also worry about Herbie's impulsivity. He just does the first thing that comes to his mind, whether that is hitting his brother or running out the front door if he sees it open. I used to think our house was like Fort Knox, but he is gradually figuring out all of the locks so it is only a matter of time... I had thought by this time we would have achieved some level of understanding with him that he can't run in the street or hide behind the neighbor's house, etc. But we're not there yet and time is running out.

So what is the cause of all this? I just read an interesting book called "Lost at School" by Ross Greene. He argues that kids do well if they can. He argues that motivational rewards and sticker charts, punishments and logical consequences are all of no use. They do not teach lagging skills. It sounds completely logical. I don't know if I'm 100% in agreement (after all, we are human beings living in a fallen world, we all screw up things we are capable of getting right), but in general I wish more people would think along those lines, teaching kids how to behave, realizing that rewards and punishments don't teach actual skills. I might argue that a sticker chart or reward system could be useful for creating habits of newly acquired skills, but again it is really hard to say based on the things that seem to be resolved and then pop back up 6 months later.

Greene's conclusion is that we need to collaborate with kids to solve problems and teach skills, brainstorming and settling on mutually agreeable solutions. Sounds great and I have done this to some extent for various specific behavior problems but I can't see how it can help with impulsivity. Actually, the challenging behavior that I really want to understand is the Wise Old Owl's aversion to eating normal foods. I get weary of the comments on my parenting, the opinions that I am "spoiling" my kids, the popular view espoused by Herbie's former psychologist that we just need to be firm. We stopped seeing that psychologist not too long after we started since she was mainly working on motivation for Herbie, not the root causes of his challenges. So while I have no idea how to collaboratively solve impulsivity or eating problems, I do think that I will be more intentional about using this method for addressing other issues like how to appropriately interact with other kids, expected behaviors on the bus, participating in circle time, and some of our other difficulties. Maybe I can even think of a way to use it for the toileting issues--I can only hope!