Happy Independence Day! A good day for us, when only one of my kids required hands over his ears when outside where all of the neighbors were setting off their fireworks, and once inside, neither one was bothered by all of the loud popping sounds outside while they were getting ready for bed. Progress!!

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.

When my youngest was first diagnosed with allergies, I went through my cabinets and was astounded by the fact that almost everything in a package contained some sort of soy additive. I cleaned out the pantry and went shopping at the health foods store, looking for foods with shorter ingredient lists and no allergens. Guess what, there aren't many foods that fall into that category. "Organic" and "Natural" foods have ingredient lists that are just as long. Snacks and baking ingredients have a lot of allergen warnings. As a result, I find the few brands that work, and stay very loyal, and make a lot of homemade foods.

Not too long ago, I was shopping with the Wise Old Owl and came across a new product in the refrigerated section--flax milk. I read and re-read that label for 5 minutes, in disbelief that we had found a safe new product. It contained canola lecithin, not the egg lecithin or soy lecithin or sunflower lecithin that seems to be in 99% of packaged foods on the shelf. While I am irritated that almost everything seems to need lecithin, I was excited that this flax milk actually used a safe variety. I bought it and spent quite a lot of energy convincing the Owl to drink it, and I drank a lot of it myself since it is so tasty. Well, about 6 weeks ago, my son refused to drink it anymore. I felt frustrated that this new food had not lasted long in his diet and I kept buying it and trying to convince him to drink it. Today, I just happened to look at the label, and guess what is in it--sunflower lecithin!! When did that happen? Must have been recently because the company's website does not yet list that ingredient, but the package clearly does. I went on a mission and started reading all kinds of packages to verify nothing else had changed. Turns out that our hemp milk had been updated, too. One box was OK but a newer box did have sunflower lecithin.

Seriously, why do you need lecithin? I'm paying a premium for a "natural" product--organic and without chemical additives. Why are all of these derivatives of foods needed??? I'd guess that 95% of Enjoy Life products have sunflower in them. I heard recently about a new cookie line being launched and everyone is raving about it, of course they have sunflower lecithin in them. Let's get creative people! I am starting to think that sunflower is harder to avoid than soy!

I am not opposed to the existence of sunflower in foods, but I just wish there was a little more variety. The food industry seems to be stuck on a short list of common ingredients that are added to everything. Cheap oils, lecithin as a flow agent, soy flavor enhancers. How about real food, not modified food?? That is my dream...

On a related note, I noticed that the California Baby Super Sensitive shampoo & body wash formula changed awhile back. While still safe for my son, it now contains hydrolyzed quinoa protein. Really? How is that natural? Anything that says "hydrolyzed" should not be in a product labelled "natural." I might as well just buy the Aquaphor baby wash at less than half the price!

We had a lovely day on Sunday with the exception of some rain that sort of ruined the outdoor portion of our Father's Day plans. Although, playing at home when I am not solely in charge of the kids is just fine with me.

It started out a little hectic, as it always seems to be so hard to get out the door at a specific time for anything, including church. And when we slipped in the back, our usual row was taken. Fortunately Herbie was in a good mood and fine with being in the very last row. That turned out to be a good thing, because the next thing you know, he asked for a snack and as I tried to open a little package of animal crackers, it absolutely exploded everywhere. I guess it was just comic relief for the folks in front of us.

Once we were actually settled down, he did great. He even went up front for the children's message and sat in one place and didn't roll around or start any antics requiring me to go sit with him. I was so proud and gave him a huge hug as he sat down. During the fellowship hour, an older gentleman came up to me and said how he enjoyed seeing Herbie growing up, that he was so impressed how well he paid attention during the children's message. It blessed my heart to know another person was proud of that accomplishment, too, and sought me out to tell me. And so I am praying that I, too, will notice things about other people and tell them something that can encourage them. We all need to hear that sort of thing!

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!

Today Herbie came home from school and excitedly reported that his classmate, S, told him he was his best friend! It was so fun to hear! This particular little boy also has some special needs, but my impression is that his needs are pretty much the opposite of Herbie's needs. He is polite and sweet, listens and follows rules and directions, but struggles mightily with academic subjects and sounds like he has some articulation difficulties. They ride the same bus and for several weeks have been working through Highlights Puzzle Buzz magazines on their way to school. We met up with S and his parents at a playground the other day and had a fun time getting to know them. Then we had S over for lunch after school and I took him home after they boys played for awhile. Herbie has not stopped talking about it, and apparently S can't wait for the next time either.
Herbie asks questions about why S likes him, so that makes for a good discussion starter about how people like you if you are kind, and other qualities of friendship. It is nice to have a basis for discussion finally, rather than it being so abstract about why he should be nice to people and how they feel when you treat them well. I'm keeping my fingers crossed that he can maintain this friendship through the summer and hoping they are assigned to the same classroom next year.

One of Herbie's favorite conversation topics is Heaven. 
 
What will it be like? When can we go there? How soft are the beds? Will there be infinite levels in Angry Birds? And will I get three stars on my first try every time?

My mom is currently in town visiting, and he is finally connecting that she is my mom. He wanted to know where her parents were, and she answered that they were in Heaven. Without missing a beat, he asked if she would introduce them to him when he got there. It was so sweet.

He also likes to talk about how our bodies and minds will be made perfect. He is looking forward to never getting into trouble! He is excited that his brother will speak clearly and run fast. He is fascinated that nothing will get dirty and happily told me I would not have to vacuum anymore. He also likes to list the various foods his brother will be able to eat. It's not in a mean sort of way, like he's pointing out the restrictions he lives with now, but he is truly excited to see his brother take his first bite of goldfish crackers or hummus with tahini or store-bought Oreo cookies.

I think about his child-like faith. That it is a sure thing that we will all be in Heaven and that there will be an amazing feast. And truly, it is a sure thing. He often brings me back to reality. The reality that Heaven is real and our hope is not in vain. That our Heavenly Father is excited to see the Wise Old Owl eat all of those foods, too. And to give me rest from vacuuming!

We have this hope as an anchor for the soul, firm and secure.
Hebrews 6:19

I got a phone call the other day giving me a heads up that a mom was bringing in cupcakes to preschool for her son's birthday. She hadn't wanted to bring in a sugary treat, but knew all the other moms had been doing just that and didn't want her son to feel left out. Since she knew there were no safe bakery cupcakes for my son, she wanted to give me notice to provide some sort of safe treat if I so chose. I really appreciated her call, and set to work baking cupcakes (again). As I baked them, I thought how ironic it was. The school has a no-nuts policy and also does not allow homemade food, apparently due to allergy concerns (I can send in homemade snacks for my child, I just can't provide them to the whole class). As far as I can tell, the only allergic child in the class is mine, and these policies honestly aren't keeping him any safer. One mom's peanut-butter cookies were sent back home due to these policies, yet they serve cheese, crackers, pudding, milk, cupcakes, cookies, etc. all unsafe for the Wise Old Owl. What is being served is not as important as HOW it is served--kept away from him and cleaned up thoroughly at the end of snack time. (In an ideal world, they would only serve safe snacks, but I am realistic that most kids wouldn't like the same things as my picky child.) So anyway, there was the birthday child having store-bought cupcakes, and my child having delicious home-made cupcakes. And on my own child's birthday, there were no store-bought cupcakes that could be sent in, so we went with a safe brand of kettle corn (which he also loves). It all just seems so silly.

I am really not hugely opposed to sweet treats. I love to make baked goods. But do they really need so many treats at school? I don't remember ever bringing in cupcakes to school or any other child bringing in cupcakes when I was a kid. Somehow it's grown into this huge untouchable tradition and teachers are afraid of offending parents by not allowing birthday treats. Although I would rather see classroom birthday celebrations that do not revolve around food, I have plenty of other things to advocate for at this time. So I guess we'll go with it, but I am certainly thankful for the heads up so my son can be included.