When I originally started writing this post, my first sentence read, “Every year I get a little bit better at this transition stuff, both in terms of what Michael needs and what I need.”
After the day we had today, I think that is true in terms of better knowing what I need but not so true in terms of really knowing what Michael needs.
Kindergarten
When Michael was entering kindergarten, we participated in all the events the school had for incoming students. They actually did a really nice job with it, and I think Michael handled the transition as well as could be expected. I, on the other hand, was a nervous wreck, especially as the first week went by and I still hadn’t seen the daily schedules or communication book that were promised in the IEP.
I eventually got up my nerve and contacted the school team and found out where we were with both of those items and was happy to see them come home during the second week of school. The teacher didn’t ever acknowledge Michael’s disability, but our behavioral support person and the rest of the team seemed to just work around her and he did okay (she retired at the end of that year after 36 years of teaching).
First Grade
To prepare for the transition to first grade, we had Michael visit one of the classrooms in the spring of his kindergarten year. We then planned a visit for the week before school started to meet the teacher and see his classroom and his desk. It was a short visit but did help Michael know what to expect for the first day of school.
I was still nervous, especially since I didn’t get much of a feel for the teacher or know whether the agreed-upon supports would be ready for the beginning of the year. The teacher turned out to be fabulous, despite the stress of waiting for the team to finalize Michael’s behavior plan and dealing with a behavioral support person who really wasn’t suited for the job.
Last year was a long series of ups and downs, both as a team and for Michael, but we ended the year on a good note and with a solid IEP for second grade.
Second Grade
In the spring of first grade, the entire class took a trip around the corner to see the second grade classrooms and meet the teachers. This was a nice way for Michael to learn about what to expect the following year without being singled out as difference (something he is becoming more and more sensitive about).
Just like last year, we scheduled a time for Michael to visit his classroom and meet the teacher again the week before school started. That visit took place last Wednesday and went very well. He had a ton of questions about everything, and I was happy that the sub who will be teaching while Mrs. G. is on maternity leave was there as well.
In addition to the classroom visit for Michael, I also requested a meeting with the case manager, second grade teacher, and Michael’s behavior specialist consultant. That meeting, which also included the other second grade teacher and the principal, took place a couple of weeks ago and was definitely the missing piece of the puzzle for my own anxiety about “back to school.”
We spent about an hour together answering the teachers’ questions about Michael and the IEP, especially regarding his behavior plan and safe crisis plan. I was able to share what we have been working on this summer and discuss how we could all work together for the best start to the school year.
Reality
Today was Michael’s first day of second grade. I arrived to pick him to find that he had been upset and crying since about 2pm and had not participated in art or anything that took place after story time. From what I can tell, he spent most of the last hour and forty-five minutes in his quiet spot, and at some point threw his shoes and at another point walked past the teacher and swung at her, lightly hitting her stomach (did you notice the part where she is going on maternity leave very soon?).
I waited in the hall for the other students to be dismissed and could hear that Michael was still upset. He did eventually calm down enough to get his things together and come out to me in the hallway, at which point he broke down in tears again. Once he had calmed down a little bit, I asked him if he would be able to apologize to the teacher for his actions but he was still too upset.
I’m still piecing the story together from what Michael’s been able to tell me and a conversation with his behavior support person. Although I am frustrated, I am not as overwhelmed as I would have been in the past and I can take some action without totally losing my cool as I would have in the past.
So, I’m heading out today to State College for the National Autism Conference. I’m hoping to learn a lot, although I’m still recovering from an allergy attack I had on Thursday night that sent me to the ER. It was the first time I’d ever broken out in hives, and we don’t know exactly what caused it, so I am pretty stressed out about what to eat right now!
I had this list of things to do before I left that started at 25 items and is only down to 20 right now, but I’m going to try not to stress out over anything – it will all still be here when I get back.
Anyway, the reason I am posting this is to share an strange yet fascinating conversation we had with Michael on Friday night. Bob stayed a little late at work to clean some things up since he is taking the week off as well, and when he got home, this is what transpired:
Bob: Hurray! Vacation has begun!
Michael: Don’t you even care about your wife?
Bob & Trish: Huh?
Michael: Don’t you even care that she is going to be away for the whole week?
Bob: Yes, I will miss her, but she really wants to go to this conference.
Michael: She does?!? Why?
Bob: Because she is going to learning more about autism.
Michael: (brightening up) Oh, so she can help me? (pausing, then seeming downcast again) But I don’t want to have to think like everyone else. You both just want me to think like everybody else does.
Trish: We don’t want you to think like everyone else. We want you to think whatever you want and tell us anything.
Bob: We want you to be your own person; we love the way you think.
Trish: We just want you to be able to talk about things without yelling and falling apart.
Michael: (brightening again) Oh, so it’s the meltdowns you’re worried about!
Bob & Trish: YES!
Michael: Oh.
This summer has been an interesting one, sort of like a seesaw with Michael on one end and me on the other. (You have to suspend your disbelief to make it actually work despite our size difference!)
Let me explain what I mean:
Michael on the Upswing
For the first five weeks of the summer, Michael went to a babysitter’s home. Bonnie is a special education teacher who wanted to do some childcare this summer and responded to my ad on Care.com (a wonderful site, by the way). She was drawn to the picture I posted of him and felt that he was the one she was supposed to take care of this summer.
It was truly a match made in heaven. Bonnie was willing not only to deal graciously with Michael’s meltdown and quirks, but also to work on specific skills such as playing games appropriately with others to have fun and to show good sportsmanship. This is a big struggle for him, and between Bonnie, the TSS, and Bonnie’s two children, who are 12 and 13, they made some good progress.
Even the psychologist who runs his playgroup remarked that he is more focused when playing games and is ready to take his turn, as well as accepting others’ choices about what to play more agreeably. He still has trouble with losing, but is learning to better moderate his words and behaviors.
Although I was completely thrilled with the arrangements and would do it again in a heartbeat, I have to admit there were some downsides to those weeks. I was driving back and forth across the river twice a day, often in very heavy traffic, and filling up my gas tank about every 5 days in addition to paying her. I had no down time, as I was picking him up directly after work and often driving then to a therapy appointment or other activity.
And Now It’s My Turn
Again, this second part of the summer isn’t all bad for Michael; it’s just better for me.
Right now, Michael is going to STAP, which stands for Summer Therapeutic Activities Program and is funded through Medical Assistance. He has been to this particular one before and is thrilled to finally be in the big kids’ room, but he doesn’t like it as much as going to Bonnie’s house. There are a lot more demands on him for appropriate social interaction in a more structured setting with a lot less flexibility and choice in terms of what he wants to do.
For me, however, it’s great! The van picks him up at the house in the morning and brings him home in the afternoon. Since the program is 6 hours, the travel time brings it to 7 hours or more out of the house each day. I go to work for four hours and then can run errands, come home and work on things around the house or just take a rest if I need one. 
We are continuing with OT but taking a break from playgroup until STAP is over, so we don’t even have as many places to go. And I think this summer has worked out well because he did get a relatively unstructured break but is now getting back into a routine that is closer to what happens at school. And even though they focus on social skills and not academics, they do have them doing some form of writing or art every day.
Now if I can just get him to work on that darn packet the second grade teachers sent home to be finished by the first day of school!
Oh, yeah, and I still don’t know what I’m going to do with him for the week between the end of STAP and the beginning of school. (Any local moms interested/available for 25 hours the last week of August? I don’t even care if I have to drive across the river, honestly!!)
Usually, when you hear a horror story regarding a child with autism and the dentist, it relates to their sensory issues and other difficulties that make it a traumatic experience for everyone involved. In our case, the pain and suffering centers on my having to deal with the insurance company.
Let me preface this by saying that we choose to have an HMO for our dental insurance rather than the PPO option. Overall, it is the better choice for our family, but it can be a real pain when trying to obtain appropriate care for our son.
Let me also say that I realize this is not really a horror story because it eventually gets resolved and that I know many people go through far worse in their dealings with insurance. I just think I will feel better once I get it off my chest, so to speak.
Our Dental Saga
February 3rd – Take Michael to new primary dentist, watch hygienist attempt to clean his teeth and dentist attempt to examine them. Once his teeth have been half cleaned and one cavity has been identified, obtain the referral to the pediatric dentist.
February 17th – Take Michael to pediatric dentist, who has been seeing him for several years and cleans his teeth himself with a regular toothbrush. Listen as dentist tells me he actually has two cavities and that he would like to fill and seal them, using nitrous oxide to help him be calm during the procedure.
February 25th – Receive predetermination notice from insurance company that everything except the anesthesia would be covered. Notice states that it is valid through 2/24/11.
March 10th – Michael turns 8 years old. (This become important later.)
April 5th – Take Michael to have the work done. The dentist is able to complete everything with the only complaints from Michael being that it took to long to “get his teeth painted.”
April 8th – Receive denial from insurance company stating that claim was sent in without referral form. (This happens every time, and every time the dentist insists they sent the form, so I don’t know who is telling the truth.)
June 10th – Receive another denial from insurance company stating that claim was sent in a second time without the referral form.
June 14th – Speak to the insurance company and am told that they can process the claim using the referral form that is attached to the predetermination of benefits for this service.
June 24th – Receive letter from insurance company stating that because Michael was 8 years old when the services were provided, our coverage no longer allows him to go to a pediatric dentist unless he has special needs that are documented by from his physician.
June 28th – Call the insurance company to find out exactly what the doctor needs to send and where it should be sent and am told by the customer service rep that no matter what I send in, nothing will be covered because our policy does not allow children 8 years old to go to a pediatric dentist, even with special needs.
After being put on hold multiple times and condescended to for not “understanding” his explanation of our benefits, am told that a supervisor is not available and he can request a callback for the next day. Am also told that the supervisors will probably ask him to handle it and won’t actually call back themselves. Tell him not to bother as I will call first thing in the morning.
June 29th – Call the insurance company again and ask to be put through to a supervisor immediately. Speak to a very nice and professional woman who explains exactly what I need from the pediatrician and where it should be sent. (She also expresses her shock at the way the call was handled the previous evening and promises to pull the call so she can review it with the representative.)
July 9th – Receive letter from insurance company that they are still working on the claim. (Assume this means they got the note from the doctor.)
July 15th – Receive EOB showing that all dental work has been paid for with the exception of the anesthesia. WOO HOO! Call to confirm that it is okay to schedule his next cleaning and am told I do not need another letter from the doctor.
Today – Call the primary dentist to get a referral to the pediatric dentist and pray that I’m not just starting the cycle all over again. Ugh!!
I just thought I would wrap up the week with an assortment of the stuff that is floating around in my brain. It has not been a good decluttering week, although I am getting better at only saving the important school papers instead of throwing everything in the file box. I have spent a lot of time this week on various appointments and meetings, as well as following up with several insurance issues that had come to my attention.
My Sleep Goal
So, I said yesterday that I was making a goal of getting 8 hours of sleep every night. I managed to get 7 last night — I stayed up a bit too late after finding out that my weekend plans were changing and thinking about how I was going to work everything out. But tonight, I should be able to get 8 hours, and maybe even a bit of a nap tomorrow since we aren’t planning to go out due to the snow.
Anti-Depressants
Did anyone else see the article in Newsweek about anti-depressants? They are saying that they have not actually been shown to be effective in treating depression and that it hasn’t really been proven that raising serotonin levels affects mood. I have not heard this before and thought both of those things were accepted truth, so I am interested to find out more about this situation.
The article did say, however, that there has been some positive effect in treating more serious or long-term cases, so I’m not sure where exactly I fall in that continuum. And, of course, you should not stop taking anti-depressants without your doctor’s help because you can experience withdrawal effects (I know from personal experience this can be pretty bad).
Michael’s Progress
Well, it has been a long week, but I have been able to cross a few projects off my list at work – thanks in part to two coworkers who have been able to help with some of it. I also went to Michael’s parent-teacher conference today and was pleasantly surprised to see both the Learning Support teacher and the SLP at the meeting. I was able to let them know that he is due for a re-evaluation this year and will be receiving a Permission to Evaluate form soon.
Michael has been making good progress with his IEP goals, especially now that he has such a good TSS with him, and he seems to be handling the ups and downs of the day much better. There have been a couple of days in the last month that were rough for him, but overall we are seeing improvement. I am hoping we will see some lessening of his anxiety and some other issues once we get his supplements back on track with his current nutritional levels (we are going to a new place in March).
My Cute Story for the Week
Sometimes after I turn out Michael’s light, he still wants another story, and so I try to make one up for him. This is NOT a strong point of mine! The other night when I was struggling to think of what to say, he was trying encourage me and said, “It’s okay, Mommy, it can be anything–fantasy, non-fiction, human interest…”
Well, my ears perked up at that and I turned to him and asked, “What’s human interest?” I couldn’t wait to hear what he was going to say; sometimes I get some very interesting responses when I ask him to define something he just said.
“Touches the heart,” he says to me.
“Where did you learn about that?” I ask nonchalantly.
“Skills group,” he tells me.
He is in a second-grade reading group! I can’t even tell you how old I was before I knew what a human interest story was, and I probably couldn’t have described it in less than two sentences even a couple of days ago. How funny is that!
I shared recently about how I had decided to start taking Michael to see a psychologist and promised an update on how it’s been going.
One of the original things that motivated me to take him was a concern over his levels of anxiety and his self-esteem. Whenever he would get frustrated about something or be sent for a timeout, he was constantly saying things like, “Everybody thinks I’m stupid” and “Nobody likes me,” usually at the top of his voice as he stormed off to his room.
After the psychologist met with me and then talked with Michael for a while, she felt that his feelings of low self-esteem weren’t pervasive and that it was more a function of him just coming out with something drastic when he was extremely frustrated, since he didn’t really know how to handle that much emotion. And, sure enough, within a month of so, he switched from yelling about how horrible he was to how horrible WE were, as is “I hate you” and “You are the worst parent ever!”
(At this point, I am ignoring the yelling as long as he is actually on his way to his room for some alone time – which is sometimes a mom-ordered timeout and sometimes a self-imposed break.)
I took him to meet with psychologist weekly for a while, and then she suggested having him join one of her playgroups, which each have up to 4 or 5 kids all close in age/functioning level. He started going to the Kindergarten-2nd grade group and enjoyed it at first – partly because he had started being aware that he was different from the other kids at school and wanted to meet these other kids I said were out there who “thought like him.”
After a while, though, the group was ready to move into a more free-form time, where the kids would negotiate what games or activities they would do together. Michael and one of the other children were having trouble with this and still needed to focus on the challenges of actually playing together, especially with non-preferred activities. So she split the group into two and continued providing a more structured environment for the one Michael now attends.
Over the past year, he has definitely shown some progress in his ability to control his whining, continue playing a game even when he thinks he might lose (in group and at school, that is, God forbid anyone should beat him in MarioKart Wii!) and allow another child to contribute to his imaginary play. The psychologist is actually talking now about having him go back to the other group once in a while and see how he does with it.
I still occasionally make individual appointments with her to discuss specific concerns I may have and for her to work with him one-on-one. Overall, it has been an extremely rewarding experience!
Over the last few days, I have been frustrated each time I think I’ll have some time to sit down and blog. I have missed posting the last few days and had a number of things I wanted to share, but it has just not worked out for me to take the time to do it.
I guess this is where I am having trouble accepting the limits I talked about the other day. Especially when it’s something I really want to do!
So, I’m stealing a few minutes to jot down a few updates:
- Although I have decluttered more than 7 things in the past week, I have to admit it was all in one day and I really got off track the rest of the week. So my nightstand shelf is usable again, but that’s about it. Tomorrow is a new day and I’m going to pick up right where I left off.
- On that note, Suzanne at 365 Days of Decluttering has decided to create new monthly challenges this year, and she posted her first one on the 22nd. The basic challenge is to focus on the room you see when you enter your home and find one thing each day to declutter in that room. Visit her to read more about it.
- Our clothes dryer seems to have died. Although it still get hots, the drum no longer turns. It might be worth trying to fix if either of us was handy enough to do it, but we’re not. Since the machine was originally purchased (by the previous owners of our home) in September 1970, I’m afraid that if we pay someone to come and fix it, something else might just go wrong next week. So right now I have Michael’s halfway dry clothes draped over all the available chairs, and we need to decide if we are shopping for a repairman or a new dryer.
- I am meeting with Michael’s psychologist tomorrow morning to discuss a couple of issues we have been having plus ask her advice about what testing to look for in his school re-evaluation, which is due this year.
So that’s what is going on in my world, and now I’m going to watch the rest of Worst Cooks in America and then go to bed. Night all!
