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.
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.
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.