I asked the Owl yesterday what his kitchen would be like when he grows up. What would be in his refrigerator, cupboards, etc. His answer was fries, ice cream cones, and oreos. Not bad! I asked him if he would be the one making the oreos (we have never found any store-bought sandwich cookies that are safe for him). He said he would make them and let me eat them! Then I asked him what he would serve for dinner if I came to visit. He got very thoughtful and then responded, "hmmm, maybe something like fries and Plentils, and chocolate ice cream cones for dessert." (Plentils are lentil chips.) He grinned thinking about the prospect of having me as a guest for dinner. I'm looking forward to it!
This winter has been a crazy mix of snow storms, frigid wind chills, mechanical problems, holidays, and lots of days off school. I feel like we have never gotten into a rhythm and we are less than a month from spring break! It is more than enough to make me feel a little crazy.
All in all, things are good, at least moving forward. It has been a huge relief to have left the public school system. We had so many battles with the public school last year, that I was terrified to send my vulnerable Owl there for kindergarten. So we opted for a local parochial school. Although we don't attend the particular church to which the school is connected, they have been very welcoming and inclusive. It is such a small environment that they are able to make accommodations for him in the classroom and keep him safe with his allergies. I pull him out for private therapies (didn't even want to deal with the public school special ed staff for him) and that makes a couple of his days shorter, so he is able to tolerate the full-day program. When issues come up, his teacher calls me and we come up with solutions together.
Herbie, on the other hand, really wanted to stay at the public school. He talked through it with us, what would change in terms of staff and the kids in his classroom, and said he wanted to give it a try. So in the fall, back he went. Right away, I worried if it was a mistake. He got sent home a few different days for throwing up at school and on the bus. He was not sick as soon as he got home, evidenced by his constant running through the house and jumping on the trampoline. He had several instances of collapsing on the floor in the sped room and saying he couldn't go back to class, so I would get called to pick him up. I left lots of messages for his case manager saying he needed some TLC, but all she was willing to work on involved following classroom rules, taking turns, and identifying emotions based on faces. Things he has been covering for 2 years, but it's easy for her to do and she can check off progress on her silly goals of success in 9 out of 10 opportunities to show recognition of emotions. How about what to do when you see someone displaying that emotion? Too hard, she said, as was my request for help in teaching him how to keep himself safe. He's too young for that sort of thing. Really? And to my constant pleas for some TLC to reduce his anxiety, the classroom teacher said the only person qualified to help with that was the school-based counselor, who happens to charge a hefty fee. We did end up paying for that service, and after several sessions, she asked me if we'd ever considered switching schools. Yes, we had, especially on the days when Herbie said he wanted to switch to his brother's school. Shortly after that, the classroom teacher said we should think long and hard about whether he should stay at that school. It became clear that in my son's particular case, his "individual education plan" meant something more like what they threw together to say they were meeting federal requirements, not to actually address his individual needs. I am at a loss to explain how we went from being thrilled with Herbie's school experience back in kindergarten to my son not being able to go to 2nd grade without throwing up, and no staff member there besides his para even caring?
So now I have 2 kids with autism at a tiny parochial school without any special ed resources. What they do have, is a commitment to care for the whole child. Not to refer each component of a child's development over to some other specialist, and then when there is no specialist to address an issue tell me I'm out of luck. The classroom teachers really care about the whole child. I expressed some surprise at this to Herbie's teacher and her response was just as surprised, it's my job, she said. We still have plenty of things to work through with the transition, but we have gone a whole month with no throwing up (yay!). He has gone to school every day that hasn't been cancelled. And on the days that have been cancelled, when we go outside to clear the driveway, my kids play together in the snow, nothing short of a miracle. Owl actually puts on all his snow gear, is able to move around in it, and is not afraid of the snow. The kids play together well (mostly), and when I say to stay where I can see them while I shovel, they actually do. I know plenty of parents just send their kids out to play and then they call for them to come in later, something I have never had the luxury of doing. They probably don't realize what a luxury it is that they have. But I get the extreme pleasure this winter of seeing my kids playing outside independently. I think other special needs parents will realize how incredibly exciting that is for me. Hooray for the rays of sunshine in the midst of our crazy life!
I had to use the Owl's epi pen a few days ago, for the first time. There were a couple of times in the past that I probably should have used it, but was too nervous and went to the ER instead. In light of all the news stories I seem to keep reading about kids who died because they didn't get epinephrine in time, I felt more confident about administering it this time around, and I am here to tell you, it is not hard at all.
The Owl was eating a favorite food that I believed to be safe, when he started to complain that it tasted bad. He gave some to me, and it tasted normal, so I questioned him a little more. He said his stomach was suddenly hurting, his neck was hurting, and his mouth was full of jelly. The combination of symptoms made me worried that it could progress quickly to something more serious, so I injected the epi pen into his thigh. It was exactly like using the trainer except for the fact that I had to keep my son from squirming away. He was screaming and mad at me, of course, but it was over quickly and we headed to the ER.
On the way to the ER, Herbie was crying hysterically that he didn't want his brother to die. While the Owl was just moaning and feeling sad about his shot, I was desperately trying to calm down Herbie. When we arrived, Herbie said he had terrible pain in his leg. He hopped on one leg through the parking lot, into the ER to the registration desk, to the triage nurse, and to the exam room where he collapsed in a chair. Wondering if I needed to have both my children examined, I questioned him about what exactly was hurting. He pointed to a spot on the outer thigh of his right leg where he said it hurt. The exact spot where I had injected the epinephrine on his brother. The pain seemed to subside when the doctor came in and evaluated the Owl, who got more medication, and by the time we left, he was fine.
The only way that I can think to explain it is an extreme case of empathy. His intense love for his brother gave him more intense empathy than I have ever experienced. Heartbreaking. Heartwarming. Amazing.
I've been thinking about a lot of things since the tragedy last Friday. There's shock, sadness, anger, etc. Wondering why the media gets so many facts wrong. Realizing more than ever our need for the Light of the World, whose birth we will celebrate in a few days.
I can't come up with much of a post about this, so instead I'll point you to a beautiful statement that I just read. Have some tissues handy.
Statement from the family of Josephine Gay
I hear too much about the hygiene hypothesis and allergies. It is not my favorite theory, at least as the media puts it out there. It makes it sound as if my kid has allergies because I keep my house too clean. Although I am hyper-vigilant about hand washing around the Owl, that came after the allergies were diagnosed.
One allergist explained to me that it wasn't how clean my house was, but the fact that kids were not growing up on farms and in rural areas where they would be exposed to all kinds of things we don't have in our suburban home. So that made me feel slightly better. But when I read about studies saying higher-income families have more allergies than lower-income families, and the conclusion drawn is that the hygiene hypothesis must be true, I get irritated. Are they saying that lower income means poor hygiene? So people with less money don't know how to bathe or clean? (I grew up without much money, and my mom made us all clean the house, we even dusted weekly, so the house was pretty darn clean. In contrast, I have a good income now and my house is a pit...)
I wish people would ask questions about whether it may have something to do with the lack of access to good quality health care that lower-income children are not diagnosed with allergies. Maybe they are suffering and feeling sick and don't know why. Or how about talking about the rise in allergies and the changes in our food supply? There were no soy additives in the food I ate as a child. The food that my parents grew up with definitely did not have long lists of ingredients with unpronounceable chemical names.
I've heard similar hygiene theories floated around about autism. Of course there are a million things that are "studied" such as medication, parental age, income, and a long list of other "factors." I always want to scream that correlation is not the same thing as causation. And again, I wonder if the higher income and higher autism rates are related to health care access. People who wait to have kids may have higher income and better insurance. Why are these questions not being studied instead of saying that poor people are messy? It leads us down such desperate paths as infecting children with parasites.
Researchers need to be asking parents what should really be studied. We know, we just don't have time or enough sleep to work on these things right now. So now to decide...should I go clean up my kitchen now while the kids are asleep, or will it do them some good for me to leave the mess....
The Wise Old Owl is completely obsessed with the Curious George soundtrack. As far as kids' music goes, it's pretty good. Not the annoying kind that you wish you didn't have to listen to. But seriously, anything starts to get old when you listen to it All. The. Time. Well, I have found an upside to his obsession.
Lately, he has started lip syncing to the songs. He doesn't actually sing along, but he is definitely lip syncing all of the words, even the faster songs. It is cute, he really gets into it and has some great facial expressions to go along with the lyrics. I watch him and I can see how if he were actually vocalizing, how he would be mispronouncing things. So I use it as a little bit of speech practice, cuing him to keep his tongue back for the "s" sound and all that, "singing" along with him while modeling proper form. Somehow it seems easier for him to form the words when he doesn't have to put the sound with it.
For a guy who struggles mightily with the rate of his speech--it usually takes awhile for him to form sentences and responses--it is fun to see him "singing" these up-tempo songs. And I am definitely glad that we are no longer in the days of tape players, where I would be spending quite a bit of time rewinding to find the beginnings of songs when a word is missed and the whole thing needs to be started again!
Our community education department is trialing a new program with high school volunteers to be buddies with kids who need extra support. Special-needs parents probably look at that community education catalog and think, "I wish I could sign my child up for that, but it probably wouldn't go well." I used to get upset about it, then I would realize that my kids don't want to be left in a class without support, so they weren't asking me to sign them up. I didn't worry about it too much. Then came the announcement for the Angry Birds Art class, 4 weekly sessions after school. It sounded right up Herbie's alley! He loves Angry Birds and he loves art. What could be better? In a discussion with some other parents, I commented about how I would love to be able to sign him up. There happened to be someone there who could do something about it who told me to go ahead and register him. I almost wished that I hadn't said anything, I didn't want to set Herbie up for a bad experience. But I went ahead with it, and we got our high school buddy. She has very little experience with kids or special needs, but she has a heart of gold and wants to make this work. It is obviously a high-interest activity, so I am not hugely worried about him not wanting to participate. I mainly wanted him to feel supported and to have an extra set of hands to intervene if he got off track or tried to bolt. And so far, so good! I love seeing his little projects and how excited he is to show them to me. It is awesome that this teenage girl can commit a few hours of her time and make such a huge difference for a child and his family!
For years I feel like speech therapists have been telling me to work on greetings with the Owl. Say hello when you see him in the morning, say good bye when you go upstairs for a minute, intentionally greet everyone you interact with all day, prompt him to say these things, too, or at a minimum to wave. I went through spurts of heeding this advice. It gets old, so I admit that I'd given up on it lately because there are plenty of other things to think about. But all of the sudden, he is saying good-bye to everyone. His teachers at school, his buddies from social skills group, the receptionist at the OT clinic, even me when I just go upstairs for a minute. And it's not just one good bye, it's 7 or 8 in a row. It is super cute and made me stop to realize what a great achievement that is for him, especially after I had let it slide to the bottom of his list of goals. We still need to get him to say hello without maximum prompts, but I am inspired to really work on that again!
I had been so looking forward to the first week of school. We had a super fun summer, but it took a ton of energy out of me, and by the end of August, I needed some peace and quiet. Herbie started 1st grade right after Labor Day. He was nervous, he told me, since the kids in his class would be different. It all turned out to be fine, the kids are nice and the staff support is just what he needs. He'll definitely need some time to get used to a full day of school (last year was just mornings), but that will come.
The Wise Old Owl, on the other hand, was practically bursting at the seams with excitement about preschool. It was so fun to see the change from last year when he was very nervous about the kids. Whether it was progress from his therapy, chiropractic care, medication, social skills group, or just growing up, I don't know. I have been seeing such positive changes in him. He loved the first day of school. He didn't talk to the kids, but he also didn't avoid them. He enjoyed all of the activities and couldn't wait to go back. Well, the second day was not such a success. He fell a few feet from the middle of a slide and broke his leg in multiple places.
The pediatrician wanted him to see an orthopedist, so we got an ambulance ride to Children's. I suspect part of their decision to send us in an ambulance was her assessment that I was not emotionally fit to be driving downtown in traffic! Long story short, no surgery was needed, we spent the weekend watching lots of TV (Gilligan's Island is a new favorite around here!), and he got a full-leg cast on Monday.
There is still plenty of discomfort and sleepless nights, and lots of me questioning God as to why He couldn't prevent this from happening to a kid who already has a list of issues a mile long, some of which are going to suffer setbacks due to this cast. But today at preschool drop-off, I saw a glimmer of something positive that may come out of this. As he maneuvered his little wheelchair down the hall and into the classroom, all the kids ran up to him to see the unusual sight. They were asking question after question. And then, I heard him say, "I broke my leg. I fell off of the slide that doesn't have any sides." At pick-up, the teacher said she'd heard more of the same--multiple answers to kids in FULL SENTENCES! The autism specialist at school made a point to come find me to say she was impressed and had alerted the speech therapist to come listen in to him speaking to the other kids in the class.
More words than he probably said in total to all of the kids in his class the entire previous school year!
I get a good laugh every day out of my kids' re-enactments of Bill Nye the Science Guy episodes. Every time we go to the library, they pick 3 or 4 DVDs to check out. Herbie's favorite is "Spinning Things." Why am I not surprised? It's actually pretty hilarious. He has the whole thing memorized. Any time we go somewhere with a revolving door, they have to act out a scene from the DVD. We probably get a few strange looks, but I am laughing too hard to notice.
Do other little kids even know who Bill Nye is? Does anyone besides me get their jokes or understand why they add an enthusiastic "of science!" to the end of everything?
I have seen this quote shared on many blogs, and I'm going to share it here, too, because it is just so awesome.
“I know of nobody who is purely autistic, or purely neurotypical. Even God has some autistic moments, which is why the planets spin.”
― Jerry Newport, Your Life is Not a Label