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!
Right now the Wise Old Owl is in a wheelchair with a broken leg. He is too young to be able to use crutches and needs some way to get around at preschool. It has been interesting to watch the reactions of others when they see him in a wheelchair. Kids always run right up to him and ask what happened. They often want to help him, push the wheelchair for him, etc. There is absolutely no discomfort. He gets lots of loving attention from people everywhere we go. It got me thinking about our comfort level, in general, with people who are disabled. In adults, usually there is some discomfort around an individual who is in a wheelchair or clearly has some sort of developmental disability. I grew up in a school where the special education kids arrived late, stayed out of sight, and left early. So I never learned as a kid how to interact with those who are different, it has come gradually through life experiences. With my kids, I appreciate when people speak to them (instead of me), show respect (instead of pity), and assume they can understand (rather than talking in a sappy voice). I love their inclusion classrooms, where all of the kids are mixed together and taught to get along. There are kids with permanent physical disabilities (unlike my son's temporary wheelchair) and they are part of the class. Young kids don't know any of the labels or medical terms, they just know each kid's name and that is enough. At what point does this acceptance and comfort level go away? Or won't it? I never had this kind of classroom as a child. So is it wishful thinking to hope that the kids who grow up with my kids and the other differently abled kids will just always know them for who they are and not worry about them being different? How wonderful that would be!
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!
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.
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 FAANSample 504 planThe role of school nurses
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.
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?
I have gotten to the point where I am (usually) no longer shocked at the audacity of complete strangers who feel the need to give parenting advice. In the past, I was the one to respond with my own rebuttal filled with all of the reasoning for why my family's choices were the best for my family. Really, that's the bottom line, isn't it? We all find different things that work, and when they are done with love and the best intentions for our kids, that's going to be the right choice. Each family finds their own unique way. There may even be a few different "right" choices. I agonize over decisions but I never do something that feels wrong just because I heard it might be a good idea. Ironically, I do wish for good parenting advice, but so often the advice I get is not helpful at all.
A couple of days ago, at Owl's physical therapy appointment, I was in the waiting room with Herbie and got an earful of opinions on schooling. A woman I had never met felt the need to tell me why homeschooling was the best because I could teach my children better than any school and that way my kids wouldn't be labeled and put on medication. Well, I'm not afraid that the school is going to medicate my children without my consent. And I am the one who sought out a label in order to enable my kids to receive the services that will help them to be successful in school. I also feel very fortunate to be in a school district with an autism specialist who communicates with me about how my kids are doing in their classrooms, paras who really "get" my kids, classroom teachers who are willing to take the extra time to make accommodations and ask for my input, and Herbie's special ed teacher who regularly talks to me about how she wants his supports to be evolving to help him continue to develop skills. I certainly don't think the school is perfect, and there are definitely situations where homeschooling is a wonderful option, but right now public school is the right place for my kids.
I thought about saying all of these things to the angry, ranting woman. But Herbie brought me back to reality, waving the book we were reading in front of my face and shouting at the woman, "you're wasting my time!" I wasn't sure whether to laugh at his comment or try to calm him down, but in the end, I just smiled at the woman and said, "Yep!" and turned my focus back to Herbie and our book. I'd rather spend my precious energy on my kids than worry about defending my choices any more.
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