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.
This Autism/Asperger’s Blog Hop was just started by Sueberry Lane, and I learned of it from Autism Learning Felt.
I haven’t used this type of link-up tool before, but when you add your blog, it will show up everywhere this particular one is posted. Pretty cool, huh?!?
Anyway, this is the original description, so please feel free to join in if it applies to you:
Please list your Autism / Asperger’s Syndrome Blog here.
Autism Advocate sites and stores are welcome also.
Even if your blog is not an “Autism Blog” but you have children on the spectrum I’d love to have you join the blog hop. This is a great way to connect with others that can relate to your story and lend a kind ear.
Have fun visiting the linked blogs and hopefully finding some new resources…and friends!
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!!
Besides catching up on dishes and laundry and dental work and doctor’s appointments and little things like updating Michael’s behavior plan and adding a safe crisis plan to the IEP (more on those topics later), I have had some time over the past month to think about where I want to go with this blog.
I have loved blogging since the moment I started over two years ago, but I have also put a lot of unnecessary stress on myself trying to reconcile my analytical side that wants to write only helpful, informative posts about things like advocacy and therapies and resources with my more stream-of-consciousness side that wants to talk about whatever is on my mind at a given point in time, good or bad.
At one point, I actually did set up a separate blog called Autism Interrupted, where I would go to ramble if I felt too depressed or frustrated to write something coherent and positive for this blog. After thinking it through, I think what I really need to do is separate the two blogs by purpose rather than by how I am feeling. (Yeah, sometimes it takes me a while to figure out the obvious! )
Okay, so all that is to say that I have decided to continue both blogs, but with a much clearer vision for what they will represent. I even wrote a new tagline and short description to clarify my purpose here:
Another Piece of the Puzzle
Awareness, Resources and Hope for Autism Spectrum Disorder
Another Piece of the Puzzle is a blog designed to raise awareness of the challenges facing parents and children dealing with autism and to serve as a resource for anyone affected by the disorder. Through this site, it is my desire to offer information on topics such as IEPs and advocacy, behavioral and sensory strategies and a variety of therapies and treatments related to autism spectrum disorder. Above all, I want to let you know there is hope for a better tomorrow!
While there may be occasions where I cross post and include personal stuff here that relates specifically to autism, in general I am going to post about my own journey at Autism Interrupted. So for more on what’s going on with me personally, feel free to pop on over!
