I frequently take my kids to a little local grocery store by the clinic they go to for speech & OT. It has a nice produce section and a handful of specialty foods that we can't find anywhere else. So if we've had a good day at therapy (actually, therapy is always good, it's the getting in and out of the car without running away from me part that is a challenge), and if they will both hold my hands the whole way to the store, then the reward is a walk across the street to pick out something to eat. Today, Herbie picked out 6 containers of his favorite hummus (and he will eat that all in about 4 days). The Owl picked up a couple of bags of fries. I got a few other things and we headed to the checkout. There was a big display of s'mores supplies right at the front. As I got into line, both of my boys saw it and simultaneously exploded into cheers of "Yeah! Yeah! Marshmallows! Yeah! Can we get some? Yeah! Yeah!" as they jumped up and down holding a bag of $0.99 marshmallows. Of course I got them, smiling at their enthusiasm. But the best part was the response of the man in line behind us. He was grinning from ear to ear and looked right at me chuckling and said, "that just made my day!"

My kids have these hilarious reactions to simple little things. They get a lot of joy out of the ordinary. Discovering a sprinkler head that they had never noticed at the playground, driving past a tornado siren we'd never seen before, finding a vending machine with Fritos, these are moments more joyful than you can imagine. How fun that someone else enjoyed their reaction today, too, and reminded me of how sweet it is that they find pleasure in unexpected places.
 
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.

 


 
It's that time of year when all the neighbor kids are going to summer camp, whether it is overnight or day camp or just the daily activities through our community ed program. I'm pretty sure my kids would not do well at any of those places, and they don't want to go anyway, so that's OK. I have looked at local options for day camps for kids with autism. But the high cost combined with the fact that my kids are pretty nervous about new places if I don't stay with them, made me rule those out. So we are left with VBS (vacation Bible school) at our church, and ESY (extended school year) through our district.

Our church recently held its VBS program, and my kids loved it. It was a small group of kids, in a familiar environment with lots of love. The junior high and high school kids did a great job helping out with the little ones, ALL of the snacks were allergen free, and when they made t-shirts, they even had a special spandex one for Herbie to decorate instead of the regular t-shirts. Wow! There were certainly some rocky moments during transitions and new activities, but we left every session in a great mood and looking forward to the next. What a blessing! The theme was "Shine God's Light" and I have to say that the teachers and older kids helping really did just that for my kids. Hopefully that lesson transferred to them, inspiring them to shine God's light in their own way.

Last week was the start of ESY. Both of my kids were a bit apprehensive about what it would be like. The Owl's ESY is at the same preschool facility where he went last year, with mostly the same group of special ed instructors. The big change was that he would be taking the bus. He has been asking to take the bus all year, but because of his allergies, I preferred to drive him. After talking with the bus company extensively, I felt like we could give it a try. So the first day came, and he suddenly realized he was actually going to take the bus, and he changed his mind. After all the phone calls and arrangements I had made for busing, I felt like we should at least try it once, so I coaxed him into getting on the bus. As soon as he was buckled in, he was grinning about his new adventure, and it went swimmingly! He kept his allergy alert bracelet on, sat in sight of the driver, and the driver had easy access to his medicine. After he came home, all he could talk about was the bus. Apparently he had fun at school, too, and the teacher called me to go over a few things, but the highlight was definitely the bus. Now he is excited for every bus ride, I wonder if I will have to let him ride it in the fall, too.

Herbie was a little nervous, but not hysterical like last year. He remembered that it was fun, but it had been a year, so if it were up to him, he would just stay home. It was a little different from last year, meeting at the high school first to have breakfast then walking (across an athletic field) to the nearby primary school for the rest of the morning (not his regular school, but the one in the district with air conditioning). He stayed 4 hours instead of 2 like last year. Apparently he loves it, because he got off the bus grinning and leaping across the yard to tell me how fun it was.

I know how hard it is to go somewhere that you don't know what exactly is going to happen. I have trouble with that myself. But these kids are so little, and they are getting on their buses and going off to the (sort-of) unknown, then coming home with huge smiles. I know it is hard for them to go off by themselves and work on difficult things (speech, social skills, behaviors--tough stuff for them), but they go knowing that the staff is going to take good care of them. Everyone from the bus drivers to the paras to the teachers makes them feel loved, so they can bravely go to school and come home super excited about going back. Hooray for the awesome special ed staff in our district! Supported by people who truly value and care for them (and have a lot of fantastic training!), my kids were able to overcome their fears and make huge strides.

 
I have been hearing a lot of "it's not fair" lately, exclusively from Herbie. It is usually regarding something to do with who has to take a shower first or who gets the first bedtime snuggle or the perception that his brother got more iPad time. I used to always try to make things like that relatively equal, keeping better track of whose turn it was to do certain desired or undesired activities first.

Now I am trying a different approach. The jury is still out on whether it is going to work, but keeping track of who got to go down the slide first when we were at the park three days ago is just not at the top of my list of things on which I want to spend my energy. When I hear Herbie protest the fairness of something, I ask him if he really wants his brother's life. Does he really want to be like his brother, without the ability to climb up on the monkey bars or jump high on the trampoline or to eat cake from a bakery? He gets that and the protest stops. But of course there is always another protest the next day. If I'm handing out tortilla chips and he thinks the Owl has one more than he does, I ask if he wants to always eat the same things as his brother, should I toss the goldfish crackers and never buy them again? I tell him that being "fair" does not necessarily mean making things exactly the same, but doing the right thing for each of my children. I wonder if I'm being a little unrealistic saying these things to a 6-year-old. And one who has had plenty of unfair things in his own life.

Meanwhile, the Owl has never once uttered the phrase "it's not fair." (I hope I am not jinxing myself here!) In fact, he is the one who goes shopping with me and wants to buy frozen pizza (that he can't eat) for his dad, freezer waffles (that he can't eat) for his brother, dark chocolate bars (that he can't eat) for me, and all kinds of treats for his family that he knows we enjoy. We get home and he announces the gifts that he has selected for everyone. (Never mind that it is my money that he is spending....) He is so excited to see the smile on his dad's face when he announces what he picked out for him. And if we are driving past an ice cream place, he'll quickly point it out to his brother and cheer because he knows how much his brother loves ice cream. He is truly happy when other people enjoy eating things that he will never get to have. I hope that his positive and generous attitude lasts forever!

I want both of my boys to appreciate all of the good things in their lives and to realize that the good outweighs the bad. Herbie gets to enjoy all kinds of fun activities and delicious foods, and when anyone talks to him about these things, he excitedly says that he is lucky. The Owl only eats from a very short list of food, but he jumps for joy when we prepare any of them. He gets home-made versions of lots of treats and is going to be an amazing cook when he grows up. I want them to remember their blessings and their loving friends and family when the worries of life get more complicated than oreos or turns at the playground.

 
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!!
 
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.