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!
Last summer, I remember stressing over who would be in Herbie's kindergarten class and who he would have for a teacher. Of course, I had only heard good things about all of the teachers, but still it is my nature to worry. After all was said and done, kindergarten was a huge success. He made great strides in so many areas and there were over a dozen staff members who knew him personally and so clearly cared for him. It was awesome. So at his spring IEP meeting, when the topic of placement came up, I was uncharacteristically relaxed. After the autism diagnosis way back when, I imagined myself becoming a parent with a plan all figured out. ("He needs to have this teacher, and be sure that these particular kids are in his class, etc.") I felt a lot of trust in the staff to place him in the best spot. A few days ago, we were notified of who his teacher would be for first grade, someone we have heard good things about. The group of kids in his class will be very different from his class last year, but the kids who will be familiar faces are all wonderful, in particular one sweet little boy that he loves to play with.
Today we popped in on his teacher, as she was setting up her classroom. We didn't have much time to talk, as we were coming from another meeting with the preschool teacher, but I was impressed with her in our brief conversation. We'll get a chance to talk more at the open house in a few days, but so far I am feeling great. We also ran into his former kindergarten teacher who was saying how we lucked out last year having such a small kindergarten class (15). She has 23 this year. It just reinforced my feeling that God is watching out for my little angels, making sure they are where they need to be and with the right people. I am holding on to that and feeling secure in my hope that first grade will be a great year.
The Owl's preschool class this year is in the primary school, and we met with the teacher and assistant today also, to go over his snacks and emergency action plan. It was a refresher after the long meeting we'd had in the spring, and mostly to drop off food and medicine. I thought it would be a quick meeting, 10 minutes or so, but we were there for over 30 minutes. (My kids, amazingly, played mostly quietly with the toys in the room and CLEANED UP AFTER THEMSELVES!!) The teachers had several questions for me and we had a wonderful conversation. What a gift that they are willing to spend the extra time on one student to keep him safe.
The month of August has been exciting, although exhausting. Whether it is the addition of the SSRI the Owl has started taking this summer, or the effects of the chiropractic care we have added to his list of treatments, or all the fresh air and playground time, he has been making progress. He talks more, he is more active (in spite of the fact that we quit PT for the summer while we are on the waiting list for a new clinic), he pedaled his bike halfway down the block (he previously could barely make it to the end of the driveway), and today he took a sip of chocolate coconut milk for the first time and ate another new food (an ice cream cone--no ice cream, but hey, it's something new!). Even better, our babysitter took the kids to the playground a few days ago while I got my haircut (yay!) and when I came home, she excitedly reported to me that at the playground when another kid came up and asked the Owl to play, he played with him!!
I wonder all the time what it means to let go of my cares, to allow God to shoulder the burdens. I still need to research therapies and practitioners, right? I need to figure out plans and social stories and new recipes and go to doctor's appointments. But this summer, I have prioritized playing with my kids, I have not spent as much time researching everything and analyzing every little detail. I've taken advice on supplements and medications from trusted practitioners without spending weeks on the internet evaluating every single option, and gone with referrals to new places without reading a million bios and googling all of my options. And I have more relaxed kids to show for it. It's not often that I can detail such results from my work, I usually work so hard and have nothing to show for it but a filthy house. But when I stepped back and worked less, I didn't mess up God's work, and He is much better at all this than I am!
So here's praying that my trust continues into the school year and I stay out of God's way while He does cool stuff. And that I am able to appreciate any progress as a gift. The Moravian Daily Texts that are emailed to me every day were particularly fitting for me today. As I am feeling so thankful, they remind me who these good gifts are from.
O give thanks to the Lord of lords, who alone does great wonders, for his steadfast love endures forever. Psalm 136:3,4
Every good thing given and every perfect gift is from above, coming down from the Father of lights. James 1:17
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