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.
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.
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.
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. I 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.
Note: Depending on the ripeness of the avocados, it may taste somewhat avocado-y. Warming it up seems to take care of that.
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, there is a pretty wide range of acceptable textures when it comes to brownies. (But bread is definitely more touchy.) 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 powder¼ 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.
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.
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?
Watching my children put together puzzles is an exercise in self-restraint. I thought that everyone started by finding the 4 corners, separating the edges and the middles, building the frame, and filling in the middle. Simple, right? Not my kids.
They like to look for pieces that they can match up right away, a section with words or a brightly colored spot. Once they find the pieces to put together that section of the picture, they build it out from there. Herbie does not mind my suggestions of building the frame; or if he finds a piece that does not fit in the area that he is working, it is OK to put it approximately where it looks like it will go, as a place holder. But his preference is to build from a starting point and go outwards.
The Wise Old Owl, on the other hand, gets a little upset at me for putting on pieces not right where he wants to work. He will in fact remove a piece that is too far from the central area where he is working. So I have to step back and watch. He usually builds from a corner and goes outward, completing the puzzle relatively quickly, but saving the last piece. He will push it firmly into the last spot, slightly turned so that it does not fit, declare that it does not fit, and hand it to me. Then he laughs as I put the last piece into place.
We do puzzles every day--maps, outer space, Curious George, cars and trucks. One day with the PCA, they set up 20 puzzles around the kitchen and hallway, wanting to leave them all together to admire their work. She laughed at how hard it was to not build the frame, letting them do the puzzles their way.
I wonder why it irks me that they do a puzzle differently. Their methods make total sense in their little minds and yet I feel like I have to correct them. Could it be that their different way of thinking is really an asset, a gift? When they are trying to solve puzzles in life, will their different perspective actually give them an advantage? While I insist on building the frame so I have a guide to build the picture, they can start with a small bit and create the picture without a frame. They do not need the framework that I need.
In life, I like to have a frame, a road map of sorts. What is the big picture? How does everything go together? I am troubled because I really do not know. My kids take it one piece at a time and build a beautiful picture. They live in the moment. What a lesson for me.
We were having one of those mornings at church. One where Herbie would not sit down for Sunday school unless I was holding him on my lap. Even then he was throwing markers and drawing on the table, yelling over the teacher's voice, etc. The other kids are super sweet and just smiled, the teacher took it in stride and tried to find some way to engage him. Anyway, we finished up and moved into the church, where I thought my bag full of snacks would keep him quiet for awhile. No such luck. He was jumping, yelling, throwing things, etc. I could see the look on my husband's face, the one that means let's just get out of here and cut our losses.
It is not usually like this. One of the reasons we visited this church in the first place was that it was small, there were not all kinds of distractions, it was not crowded, the music was not loud. We noticed that the typical sensory overload symptoms did not show up when we came here. But today something was off, we still were not back in our routine after Christmas break, the weather was changing, who knows.
It all culminated in the children's sermon, when both kids went up front and did not sit still. The Wise Old Owl thought it would be funny to keep moving to different spots far from the pastor. That wasn't too bad. But Herbie was jumping around, calmed for a second by the pastor gently putting his hand on his shoulder, then decided to pull off his shoes. And the shoes of the kid next to him. So I went up front and sat down with the kids, Herbie on my lap again. In other setting, I would have been completely embarrassed to do this, but when I looked up, I just saw lots of approving smiles. Really! It was so nice to know I was not being judged.
After we went back to our seats, both kids were perfectly well behaved for the rest of the service and fellowship time afterwards. Were the sweet ladies in the choir up front praying for us? Why do I always forget to pray for myself in such situations, anyway?
Later that afternoon, a woman from church called me. She started right off by saying she had been talking to the Lord about me (I love to know people are praying for me!) and felt prompted to call me. She just wanted to say that she loved our family, and added, "Thanks for sharing your kids with all of us at church." It was a lovely conversation that brought me to tears (of joy) and erased all of the frustration of the morning. I am so glad for people who encourage me in these ways. I hope that I can be an encouragement to others, too!
It seems that the question everyone is asking these last few days is about favorite memories of 2011. I have a hard time coming up with an answer because I am generally too tired to think that hard! The first few months of the year were a blur of testing and evaluations and doctor's appointments. We had a respite from all that in the summer and a fun vacation but summer also comes with stress due to a lack of routine/structure. We certainly had plenty of wonderful moments and days but what I define as a great moment does not mean all that much to others.
One great development was the start of school going so well for both kids. I love that they love school, that they love their teachers. So much in fact, that Herbie wanted to make Christmas cards for all 17 of his. (Classroom teacher, paras, specialists, therapists, bus driver, etc.) This means a lot to me because I never really had teachers that cared so much. Herbie's teachers go the extra mile to help him be successful and he loves them. I see so much of myself in my kids and remember how painful the early years of school were for me, and it is wonderful to see that my kids are getting a better start.
I also love that my kids are so comfortable at church. If there is anywhere that their outbursts and strange behaviors should be accepted, it should be (and is) at church. That makes me very happy. I am glad that Christmas was a lot of fun for us and I am getting better at managing my expectations. We didn't need to have a big celebration, just some quiet time together without a schedule to be a family and play with the new Christmas toys.
Anyway, I guess I have been thinking more about what my hopes are for 2012. I hope that the Wise Old Owl finally gets a diagnosis that can guide his therapists into treatments to move him off of the plateau he seems to be stuck on. I hope that I can be at peace with whatever diagnosis he is or isn't given. I hope that Herbie stops wetting the bed. (And I hope that my washing machine doesn't break from over use.) I hope that school continues to go well. I hope that my kids can make some good friends. I hope that our family can yell less and laugh more.
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