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.
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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
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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.


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Over the last several months, I have been taking my youngest son to multiple specialists in an effort to truly figure out what is at the heart of his developmental and behavioral challenges. When he was a baby, we were told that he likely was "just delayed" as are so many kids. I think they tell parents this because it softens the blow, and the early intervention folks know that they are not going to be around anymore when you figure out that they were wrong. Just like our first allergist said there was a good chance he would outgrow his allergies by the time he was four. And now our current allergist tries to hide her alarm when she sees the 5-centimeter welts rapidly emerging on his back when they do a skin test to look for possible reactions usually measured in millimeters after 10 minutes.

When the Wise Old Owl was initially diagnosed with food allergies, I pretty much went through all the stages of grief that everyone talks about. And then did the same thing shortly before he was two and his SLP said he had apraxia. We moved forward with implementing the therapy we thought would help. All that I read suggested kids with apraxia often had sensory issues and low muscle tone, check and check. We went with that for awhile. After some other health issues were piled onto his list, we saw many other specialists, did genetic testing, and were told to just keep on treating each symptom, that his prognosis was good. I don't know if that was good advice, but it was probably what I needed to hear at the time, since we were soon to embark on the complicated process of an ASD diagnosis for Herbie.

Educators began observing Herbie and making gentle suggestions that we have him evaluated. I took their lists of observations to our doctor who immediately referred him for an autism evaluation. There was no wait and see or telling me he was fine or that he would outgrow it. All of the sudden it was obvious to everyone that Herbie was on the spectrum, when a month prior, I had believed that he was completely normal and that his brother was the one with issues. I don't remember going through any grief for Herbie, though. His diagnosis was more of a relief, it gave us the key to unlock services that have helped him tremendously.

As we went through Herbie's evaluation process process, I couldn't help but compare the challenges of my two children. The specialists would ask about various things, such as sensory integration. Well, Herbie is an extreme sensory seeker. That fits with autism, they would tell me. What about the Owl who is an extreme sensory avoider? Well, some kids just have sensory issues, they said. Herbie never stops moving and loves to crash into things, again common for ASD. The Owl never moves, he could sit with books or puzzles for hours, but apparently that's not obvious ASD. Herbie would not participate in circle time activities or play with kids at school, typical of kids on the spectrum. The Owl, well, apparently he was just anxious to interact with kids because of his speech disorder. Herbie was in a phase of lining things up everywhere when he was being evaluated. Everyone nodded their heads and said that was a sign of ASD. The Owl had been doing that ever since he started picking up toys, but apparently it's not a red flag for him. Herbie is rigid about routines, can't be interrupted, etc. So is the Owl. Herbie loves to quote movies. So does the Owl, obsessively, and he is much more of a mimic than his brother. I could go on and on. Somehow these traits only indicate ASD in one of my children. I really can't figure it out. But Herbie's autism is "obvious" to everyone and the Wise Old Owl's lack of autism is equally as obvious.

I kept thinking about the relief I felt after the ASD diagnosis for Herbie and how it led to ideas/strategies/therapies and progress. I wanted the same for the Owl. We went to see a neurodevelopmental pediatrician. That sounded really promising, but he couldn't be bothered to read any of our 500 pages of intake paperwork that had taken me 2 weeks to fill out. The ones that were sent with a letter stating multiple times in bold underlined font how imperative it was to complete everything well in advance of the appointment so the doctor could review it. He didn't even know why we were there until he walked into the room and read my son's name off of his chart. Then there was the neurologist, much kinder and slightly more helpful. She interpreted the brain MRI and told us of the "non-specific" findings of some abnormalities in the regions of the brain that control motor planning. Then said we should keep on doing the same therapies we had in place with no changes, not withstanding the fact that his progress in some of those has been very poor.

More recently, we went to see a developmental pediatrician who is known for his expertise in complimentary medicine. He looked over the Owl's history and therapy reports and discussed with me how his poor nutrition could be influencing his lack of progress. We talked about "leaky gut syndrome" and the cascading effects--food allergies, poor immune system, malabsorption and developmental delays, feeling unwell and subsequent anxiety, sensory issues and rigid behaviors to create some sense of order. It made a lot of sense. And then he said there was no one diagnosis that could capture his challenges. Again it was hard for me to hear, but after three appointments with this doctor and seeing his thoughtful consideration of the issues, I think I can believe him. He had a lot of recommendations for supplements and strategies for reducing anxiety, things that he thinks will help him to make better progress in his current therapies. This is really what my son needs, so I am trying not to be unsettled by the lack of a name. If he hadn't gotten help through early intervention, would he be nonverbal and diagnosed with ASD at this point? Maybe. But for now I will stop trying to put a name to his challenges and put my energy into following this new path to which we have been directed.





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Earlier this week, we celebrated a great success in following directions! It was Palm Sunday, and our church invited all of the children to wave palm branches for the processional hymn. Simple, right? One of the wonderful Sunday School teachers realized that this might not be so simple for Herbie, so she had the kids practice with the palm branches and instructed them on how to place them at the altar. (Let's just say that the Christmas pageant was a learning experience.......) Anyway, the practice was comical, with Herbie running in every possible direction around the sanctuary, up and down stairs, in and out of closets, and I was a little worried. But when the time came, he did his part, put the branches in the right place, and sat down. Then he fully absorbed himself in a new Highlights Hidden Pictures magazine (his latest obsession) for the duration of the hour. Miraculous.

I'm so happy to celebrate the little things. Like Herbie following directions, the Wise Old Owl drinking 2 ounces of flax milk almost every day for the past couple of weeks, and a loving church that is unfazed by unusual behaviors. And that is one of the blessings of autism, realizing that there are things to celebrate every day.

With this being Autism Awareness Month, I feel like I should say something deep and meaningful about how to spread awareness and compassion. Alas, I am an engineer, and not a terribly eloquent writer. So here is what I'll say, something practical and easy to accomplish. If your church family is not aware of your child's challenges, give your pastor a copy of this informative summary of how autism affects your family and your ability to participate in a faith community. Or just email him/her the link. It's an easy way to start talking about your child's disability, if you have not gotten comfortable with that yet. If you cannot be open and welcomed in your own church, then it's time to either educate the people there or else find a new one. We visited many churches and joined one that was small, without too many distractions or potential for sensory overload. That's what worked for us. And we look forward to going every week. The kids are welcomed and loved and taught about the love of Jesus. And that is exactly how it should be.
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The other day, I was in serious need of a break. Since it was a blustery day outside, I decided not to feel bad about keeping the kids inside. I handed them the iPad and rather than accomplish some work, as is my usual routine when they get the iPad, I sat down with a book I had just gotten, called Shut Up About Your Perfect Kid. The title makes it sound a little negative, but it is actually a really funny book. I kept laughing every few minutes at something I read. Herbie, being a lover of comedy, came over from playing the iPad and demanded that I tell him what was so funny. I read what I had just laughed at, and he gave me a quizzical look since of course it meant nothing to him. This happened a few times and then he gave up. But each time I laughed (believe me, it is a funny book), he would pop his head up to look at me and grin.

At bedtime, when we were praying and saying what we were thankful for, he piped up and said, "thanks for mama laughing at the book today!" He was so happy that I was laughing, bless his little heart. I need to go finish that book. More importantly, I want to remember the smile on his face when he saw me laughing, and reproduce that as often as I can.
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So I have to continue the chocolate theme I started in the last post. I think it is currently the key to getting my youngest son to eat! We met with a developmental pediatrician last week and the subject of nutrition came up. I lamented that most of the "healthy" things the Wise Old Owl eats are hidden in chocolate and sugar. He gave me permission to feel OK about that. Phew! We do a lot of cereal bars with hemp protein and chocolate chips, and our modified chex puppy chow has Neocate Jr. mixed in it. One that I am really excited about lately, though, is chocolate pudding. It is a pretty big deal to get him to eat something "wet" like pudding. We started out making it REALLY thick and serving it warm, so that helped. He would lick a tiny bit off of a spoon, and progressed to eating a whole bite, to finally a bowl of pudding! Gradually (like over the last 8 months) I have been thinning it out and making it more like the consistency of a nice creamy pudding.

I love avocados and wish my kids would eat them, too. This recipe uses one and a half avocados because whenever I make it, I like to have a turkey sandwich first and put the other half on my sandwich. :) It's good for me to eat something healthy with the avocado before the chocolate version. The Wise Old Owl will not eat the sandwich, so he ends up with chocolate avocado pudding for lunch. But according to the doctor, that's better than nothing, so I am not letting that stress me out at the moment.

I have to give credit to Jessica Seinfeld for the inspiration from her cookbook "Deceptively Delicious." I made her avocado/chocolate pudding a few years back for Herbie. He loved it at the time, but he's moved on and no longer likes pudding. I pulled the recipe back out last year and substituted coconut oil for the margarine and it came out pretty much the same. She cooks it over the stove and adds corn starch at the end to thicken it. I've gotten to the point where I can leave out the corn starch and he will still eat it. I like to thin it down with coconut milk, that is the only milk I've tried in this recipe. I just really love So Delicious coconut milk, because, well, it is SO delicious! And the DariFree is my way of adding a little calcium, but it's not needed for taste. As a bonus, there is no need to wait for this to set up in the fridge!


Chocolate Pudding with Avocado

Ingredients:
1/4 c. coconut oil (melted)
1-1/2 ripe avocados
1 c. powdered sugar
1/2 c. unsweetened cocoa powder
1/4 c. chocolate flavored DariFree powder
1 tsp. vanilla
1/4 c. (or more) So Delicious vanilla coconut milk

Puree the avocados and coconut oil in a food processor. Add the dry ingredients, then vanilla, and add coconut milk to achieve the desired consistency.
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I have officially given up on feeding therapy for the Wise Old Owl. It is a long story, but basically after 2 years, I have decided that our time and money could be better spent. So we are adding more speech therapy and letting him eat more fries and cookies. I am trying to reduce the stress in our home around mealtime, it gets pretty intense. I have a feeling we may return to feeding therapy down the road. But for now, we really needed a break.

The administrative assistant at my kids' OT clinic gave me a recipe for black bean brownies that she feeds to her picky son. It wasn't allergy safe, but she figured I could doctor it up, and I did! I served them to the Owl, told them they were his "protein brownies," and watched him happily gobble them up. I actually had a hard time not eating them myself. Now I admit that regular brownies with no pretense of nutrition taste better. But these were still quite good. And with some protein, calcium, omega-3's, and plenty of chocolate. I can envision myself serving a dinner of all brownies. It might be something like a black-bean brownie for protein, a quinoa brownie for the grain, a spinach brownie for a vegetable, and maybe a blueberry brownie for fruit. And of course a real brownie for dessert. I'll have to work on the spinach and blueberry versions.

Here is my recipe for anyone with a picky eater with allergies who loves chocolate and baked goods. (My apologies to the folks with legume allergies!) I added DariFree and flaxseed meal because, well, I add those things to anything that can hide them. They are probably not crucial. The chia and sweet rice flour may seem a little random. I was worried that the egg replacer might not be enough since the original recipe called for 3 eggs. I like the gel that chia forms (and chia is really nutritious!).  I didn't really play around with the recipe since it worked on the first try. I have found that baking is more forgiving than people think. When the Wise Old Owl "helps" me bake, he is not the most precise at measuring, and it always turns out OK. So I hope someone has fun with this and gets a little extra protein into their child.

Black Bean Brownies

Puree wet ingredients in food processor:
1 can (15.5 oz) black beans, rinsed & drained
3 T coconut oil
1 T vanilla
1 T Ener-G egg replacer whisked with 6 T warm coconut milk

Mix dry ingredients in a separate bowl:
¾ c baker’s sugar
¼ c cocoa powder
1 T ground chia seeds
2 T sweet rice flour
2 T chocolate DariFree powder
¼ c flax meal

Mix the wet & dry together, fold in ½ c chocolate chips (Enjoy Life brand is safe for us). Bake in a greased 8x8 pan for 40 minutes @ 350F.



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A bright spot 03/05/2012
 
Today was the Wise Old Owl's check-up at the allergist. He ends up going every 6 months because they can never fit all of the things to be tested on his little back. If you have never had allergy testing done, the skin test (more sensitive than a blood test) involves pricking the skin with a dab of an allergen and looking for a red bump. In the past, the reactions have happened so fast that within a minute all of the pricked spots have raised welts a few inches in diameter. They start to merge together and make the testing unclear. So they can only test for about 15 things at a time.

This visit was specifically to look at nuts and seafood, things we have been avoiding but only knowing that he had a positive test to almonds, and that seafood was too risky for someone like him. I felt confident that he wasn't really allergic to seafood, we were just avoiding it to be safe. I even told him we might buy some Ian's gluten-free fish sticks on our way home. Well, it turns out that shellfish seem to be OK, fish are definitely not, and nuts are still out. I was emotionally drained. We came home and decided to skip the preschool art sale tonight.

Then he asked about his "star chart," the one where I put a star every time he tastes a new food. It has been up for a couple of months with little progress except for trying things like chocolate muffins or a new recipe of pancakes. We agreed that 12 stars would get him a new app on the iPad. He had 4 more to go. So on a whim, I told him if he'd drink a glass of rice milk, he could get 4 stars. He shouted in agreement, then changed his mind to flax milk. (A good choice in my opinion, the Good Karma flax milk tastes fabulous!) I poured 2 ounces and handed him the cup. He smelled it for awhile and told us to close our eyes. Herbie and I huddled together with our eyes closed, saying things like, "I hear swallowing sounds! I think he's going to do it!" And he did it! We ran around the house cheering like he had just been on the winning Super Bowl team. Now my boys are playing Stickman Golf and I'll probably let them stay up way too late. But I have a glimmer of hope tonight.
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I have decided that I am really looking forward to summer and having the Wise Old Owl out of school for awhile. It has been completely exhausting and I reached the panic stage this weekend. While I would love for Herbie to be in school all year to give me a chance to rest for at least part of the day (just talked to his resource room teacher about ESY, thank goodness for that), I cannot say the same about the Owl. It feels like every other week there is some sort of food activity planned at preschool. Fruit loop necklaces, projects made out of pasta, gingerbread houses, rice krispy treat snowballs, etc. If the regular classroom teacher remembers to tell me about it, I can bring in an alternative food and my son will sit at a separate table and do his project.

My son's IEP clearly states his issues with social interactions. The SLP comes into the room to encourage him to talk to other kids and coach him to say one or two words. He does not talk for most of the day, and never says anything unless the SLP is right next to him. So here they are, encouraging him to interact with kids one minute, then clearing him away from all of the other kids to keep him safe during the activity. What kind of message is that sending him?????

I recently realized that the healthy snack initiative--the one that was preached to parents at the beginning of the year and stated unequivocally that nobody should bring cookies or cupcakes--was a joke. I overheard a parent explaining to the teacher about the two flavors of cupcakes she had brought for her son's birthday, and sadly realized that my son only had crackers and cereal in his safe snack box. I thought maybe she was an exception breaking the rule, but then a few days later, a mom asked me if there were any safe birthday treats that she could buy for her son's upcoming birthday. Apparently the teacher had told her she should bring in cookies or cupcakes. She ultimately decided on store-bought cupcakes, of which there are none that are safe, but at least I had a heads-up, so I could make cupcakes and send one to school for the Wise Old Owl. Now he has a box of his favorite cookies in the safe snack stash.

Late last week, the classroom teacher sent out an email asking parents to bring in empty food containers (milk jugs, butter containers, egg cartons, etc.) for their grocery store, which would be set up for the entire month of March. I asked our allergist what I should do and was told that he could not play with such containers. He either had to skip school, not participate in that activity, or all of the containers needed to be safe. Wow. I passed along the info by email to the teacher, and over the weekend I went into panic mode, trying to empty out all of the containers I could find thinking that I could single-handedly supply the entire grocery store. There have been worse things to prepare for at school (like making homemade gingerbread, frosting, and buying enough candy decorations), but I think it has just been building up so this latest alert put me over the edge. This morning, the teacher said that it would be easier to cancel the activity and do something else. I was so glad for that, but somehow, the tension that built up over the last few days has not gone away. (Too much caffeine maybe?!) She said it to me very kindly, but I still wonder how she felt. Is she irritated with me? Does that ever spill over into how she treats my son? Do the other parents know that he is the cause in the change of plans? And why do I need to worry about this so much???

This morning, when we were heading to school, the Wise Old Owl asked me which room he would be going to. I told him it was Tuesday, so the regular classroom today. (Wednesdays are spent in the special ed room with a smaller group.) He expressed some disappointment and said he wanted to go to the Wednesday room because he loves the play-dough. Every week, one of the paras makes fresh play-dough that is safe for him so he can participate with all of the kids. They make him feel safe and part of the group in that room, and he loves it. Isn't that how it should be everywhere?
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