In So Many Words

Nothing in my brain is really connected right now, so this post may not make much sense. But I wanted to at least keep people up to date with the main stuff.

First of all, I’m so irritated with myself that I haven’t downloaded the pictures from Trick or Treat or the school Halloween party. Michael ended up going as a bottle of mustard, which was so cute, especially since yellow is his favorite color.

I also keep forgetting to take the camera with me to swim class, but he has made so much progress in the few weeks since he started. He is willing to try everything in the water and actually like floating on his back in the T-position the best (which freaked him out at the beginning). He is putting his face in and doing scoops and “diving for rings” in the 2 foot area. The only thing he is scared to try is jumping in the pool. The instructor has told him that he has to do it next week, and that he will help him. I am talking to him about it every day to encourage him about how good he will feel once he has done it.

Today was a whirlwind. There was no school today, so Bob took off work to stay home with Michael. I went into work early, and then we all met at the psychologist’s office to share the new school behavior plan with her and talk about how things are going in the playgroup and at home. Then I went back to work until it was time to go to school for the Parent-Teacher conference.

I had a great meeting with his teacher and case manager (the learning support teacher). His academics are great, and they are seeing a decrease in the yelling and an increase in him recognizing when he needs a break. We have what I think is a great behavior plan that is starting tomorrow, and we will also have a new TSS starting tomorrow.

When I got home from the conference, the BSC and the new TSS were at the house. It was great to meet her, and we are all very optimistic about how this will work out. Now we are getting ready to go out to a new support group meeting for Asperger’s/PDD-NOS/HFA. I’m not sure what it will be like, but I thought it was worth checking out.

So a very busy day – but I feel good about everything. I don’t really have a to do list put together right now, so I need to go through my pile of stuff and sort out what’s left to take care of. That’s my plan for tomorrow after work, and that’s about as far ahead as I can think right now!

This post was written for Steady Mom’s 30-Minute Blog Challenge. To see some actual to do lists by people who are really getting things done, check out Crazy Adventures in Parenting’s To-Do Tuesday.

Well, I didn’t get much checked off my list this last week – too many other things kept popping up that needed to be done. After going round and round with the DAN! doctor’s office, I have decided to get copies of all the test results we haven’t met to review yet and then cancel the follow-up appointment. It is just not worth the hassles I am dealing with every single time I need insurance paperwork done properly or even to talk to someone at the office. The office manager has been very helpful, but even she can’t make up for the other frustrations I have experienced.

Now I am trying to figure out what route we are going to go. I do have Michael taking a small amount of Essential Fatty Acids as well as Melatonin at bedtime and Liquid Zeolite, which we are trying out with a few other local parents. We are going to be tracking the zeolite on a weekly basis, so I can’t add the other supplements I was holding until the organic acid test was sent in (which is now on hold anyway!).

We have a behavior plan meeting Thursday morning with the school – very excited about that – and our wraparound agency is working on getting a new TSS b/c the current one is just not up to par with what we need.

With everything going on, I think reorganizing my to do list into more of a schedule would make sense and help me to feel less like I am trying to do too many things at once. Hopefully, this will move me closer to a routine like the one that was working so well last summer.

This is where the To-Do List normally goes, but I just still haven’t really figured out how to organize my schedule. So I guess this is really just a Biomed Update!

The behavior plan meeting went well. I’ll post more about that soon. Right now, we’re super excited about going to see They Might Be Giants on Saturday for a kids’ show – although it is supposed to be yucky and rainy. My sister-in-law and her family are planning to come. Two of their girls haven’t been feeling well, so we are hoping they will be better by the weekend.

For more To-Do Tuesday, visit Crazy Adventures in Parenting.

Do you ever walk around with the feeling that things are piled up precariously around you and are going to fall over on you like an avalanche at any moment?  I think it is times like these where I don’t have a lot on my schedule and immediate to do list that all the looming fears come forward to haunt me.

The weight of all these worries seems to get heavier each day, even as my strength slowly returns to my body.  Now that Michael’s TSS has all but disappeared, the daily notes coming home from school are uniformly positive (Good day!, Great day!!, Another awesome day!!).  In my world, though, strings of good days are always suspicious, if only because they invite you to relax and feel like everything’s going to be okay indefinitely.  On the other hand, this could be the school’s way of saying they don’t really like having a TSS there but are not going to pay for a paraprofessional, that they don’t want to be bothered to implement the SDI’s we have on the IEP and appreciate not having someone from outside observing their actions, or it could be a campaign intended to avoid having to write a behavioral plan for the next school year.  In fact, I can see them congratulating him on achieving his goals and blandly stating that they just can’t imagine what other goals to work on.

Now the panic starts to descend fully.  With no behavior plan or, God forbid, IEP, we could start to slip on the supports and modifications he needs, we could start expecting him to respond like all the other kids and “act his age”, we could see him sent to the principal’s office for behavior infractions that are a direct result of his gaps in executive functioning.  I truly am happy that he is so smart and so verbal, but these sorts of fears that creep in terrify me to no end.

I try to get a grip and tell myself this is good timing.  It’s only mid-February, so I have a few weeks to get my thoughts together and make notes about what should be on there for next year–both what has worked well this year and what new skills or expectations will come with being in school all day for first grade.  If I could just pull myself together enough to put a sentence together without dissolving into tears, maybe I could actually make some progress on this.

And most of all, I need to remember to trust God to ultimately be our protector and helper.  He is our source, not the school or the teachers.

First of all, to anyone who has ever told me they had a migraine and I made some sort of useless sympathetic noise, please forgive me – I had no idea!!

Actually, they don’t really think I had just a migraine because they was also a cough and a fever and nothing got better until I finally was given antibiotics, but frankly, the pounding head was worse than any of the other symptoms I have felt over the last week and a half, even throwing up repeatedly when the pain wouldn’t go away. I am not back to 100% yet, but just being able to get out of bed and walk around without fear of my head exploding is pretty good.

I don’t have much to say because I have done less than nothing the last several days, but I am so thankful I haven’t taken on a bunch of new commitments that I would have had to go back on.  In fact, I just said no to two more things that came my way, and I am feeling pretty good about it.

My time will be well spent – working on the agency to find a new TSS since our current one has decided that her grad school workload has increased to where she can only fill 6 of Michael’s 21 hours each week.  If they don’t get a new person soon, I don’t know if I should switch to another agency or just let things slide and see what happens.

Then I found out that the summer program he attended last summer has been cut from eight weeks to five weeks.  Which means there will be five weeks to find childcare for instead of two.  I was so happy to be done with daycare, but here we are again.  Problem is they can’t tell me what the dates are yet, so I can’t really start calling daycares yet because I don’t know what I am looking for.  Then we will need to amend his psych eval to request TSS hours for the summer – he wouldn’t need one at the program but would at a typical daycare – UGH!

I know I called this blog Autism Interrupted, but it seems you just can’t get away from it.  Although I guess this is more about the scheduling nightmare we call social services and maintaining my job!!!

Anyway, Happy Valentine’s Day everybody – we celebrated by going to the library as a family.

Yesterday morning another one of Michael’s former TSS’s came for a visit. We had a nice time sharing what we have been up to and talking/playing with Michael.

Her daughter’s family has recently moved back to Pennsylvania from California, and she mentioned needing to go shopping for warmer clothes for the kids since they don’t really have anything suitable for winter. Well, it turned out that the two boys are 2 and 4, so I was pretty sure I still had clothes in those sizes up in my attic.

When I went up the ladder, I was amazed at how many boxes of stuff were there. They must have multiplied on their own, because I certainly don’t remember putting that much up there myself! I was also shocked by how many clothes I still had, even though I have given quite a bit to other friends in the past. I started thinking about pulling it all out and getting rid of it, but I know I don’t really want to lug it all to a donation center.

So I brought down the 2T and 4T clothes that I had and we went through it to find the fall/winter items. I actually had a winter coat in each size! My plan for the rest of it is to bring it all down and schedule a couple of mornings where any of the moms from church can come over and take whatever they can use. I’m not sure how long it will take me to actually organize this, but I think it will be a lot of fun!

What a weekend! I couldn’t find childcare for part of this week, so I was supposed to work both Saturday and Sunday to make up for the fact that I can’t go in today or tomorrow. But I had periodontal surgery on Wednesday (my second one) and by Saturday was really swelling up and feeling uncomfortable.

I got through the four hours on Saturday and even posted a very brief Saturday 9 post, but then just came home and slept. Sunday morning I felt even more swollen and in more pain. I worked for an hour and then gave up and came home, after calling the dentist to complain. I couldn’t even sleep because it hurt too bad.

Well, he called in a prescription and I am slowly starting to feel a little bit better. I’m glad because today we are going to Michael’s elementary school for a tour with the principal; it will be good for him to look around on his own and we will take pictures to make a little book for school.

I can tell Michael is really nervous about school because he has started twirling his hair a lot, which he hasn’t done since he stopped going to in June. He is also now telling me that he doesn’t want to go and is just going to say “blah, blah, blah” the whole time we are there. Guess I need to come up with a good motivator for this one, even though I really just want to come home and go back to bed.

Our new TSS may come over later, so that would be a big help. The last couple of days have been so frustrating, and I don’t really feel up to playing all day today.

I have seen quite a few other bloggers recently talking about IEP meetings and programming decisions and can empathize with all of them. It can be so hard to know what to ask for and what choices to make, especially when school is several months away in most cases. I am so, so thankful that we finally have all our decisions made and paperwork done for both the summer and the fall!

For those that have been following my (perhaps) overly obsessive struggle with the issue of kindergarten vs. first grade, the final answer is…

Although it is not quite 3 hours per day, and he will be pulled out for both Speech and OT each week, it just feels like the right choice for our Little Guy with where he is socially and emotionally. He will also be able to go to a social skills program after school for a couple of hours, through the behavioral health system, which will target those areas.

His STAP (Summer Therapeutic Activities Program) has also been finalized, and we got our first choice! This will be Monday-Friday from 9am-3pm for eight weeks. I believe he will really enjoy this, especially as they will go to different playgrounds almost every day.

One other good report – I spoke to our behavioral health provider and expressed my strong desire to keep the same TSS for both the summer and into the fall. I mentioned how difficult last year was with having 6 different TSS’s as well as 8 weeks without anyone, and I also expressed how both the school psychologist and speech therapist had asked specifically if she would be coming with him in the fall. The assistant coordinator assured me that she didn’t see any reason why that wouldn’t be possible, which is a relief compared to my previous experiences with them.

And did I mention that we only have 3 more weeks of paying for daycare and then we will be done with that part of our lives for the foreseeable future? (Yes, that is me doing the happy dance!)

Our TSS went to daycare a little later today so she could stay for part of the teaching time (they have a long playtime followed by structured time at desks). We have been told he is doing fine during that part of the day and didn’t need the extra support, but she wanted to see what “fine” meant. Now the word “fine” usually sets off red flags for me, but there is only so much I can do when I am not with him to explain things to him and for him.

Two things happened that are just breaking my heart, mainly because I work so hard to help him understand what is going on around him and be able to respond appropriately. The first thing is that sometimes when the class gets very loud during playtime, the teacher will raise her voice and tell them to quiet down or they will have a time out. So she does this today, and the Little Guy yells out and makes a growling noise and then stomps over to his desk and sits down. The TSS asks the teacher why he is sitting at his desk and is told he probably thinks he is in time out and that he will probably get up in a couple of minutes and start playing again – he does that sometimes.

Aargh!! So not only does he mistakenly think he is in trouble and supposed to be in time out, but he also thinks he gets to decide when the time out is over. And this is evidently not the first time this has happened. He doesn’t like being yelled at and obviously doesn’t really understand what she is saying. The TSS takes him out in the hall and tries to explain that he is not in trouble. He says he is confused and, when asked why, says he is confused because no one else is sitting down for the time out. So she explains what the teacher meant and convinces him that no one is in trouble right now because they quieted down when asked to.

Next they get into the teaching time and he responds negatively to the teacher’s directions several times by either yelling or by getting up and running around the room and then coming back to sit down. The TSS is told that he is okay, he just does this sometimes and he will come back when he is ready. Keep in mind, this is at a daycare center that is one of the most structured I have seen, and they would NEVER accept anything even close to this behavior from another child. I am blown away that it is being allowed for the Little Guy and fail to see how this is in any way helpful to us as we move towards kindergarten. We had agreed as a team to allow him to choose to sit out of some activities as an alternative to having a meltdown if he is very upset, but even that is supposed to be handled in a way that doesn’t allow yelling or wild behavior. Apparently that concept has gotten way off track.

Thank God for our TSS, who is going to switch her schedule around to be at the daycare center for more of the structured times and try to put into place some strategies to establish some new behaviors. I guess I will email the rest of the team and see if I can get some help with this one; it may be a bit too much for the two of us to change the tide.

Hopefully I am not being too optimistic, posting this so early in the day, but today is shaping up to be a much better day than yesterday. After the fiasco yesterday, I did sit down last night and make a schedule for this morning’s routine.

Since I didn’t feel like laminating and we are almost out of Velcro, I improvised by mounting the pictures on card stock and using circles of removable tape to adhere them to the dry-erase board we have for our weekly schedule. I didn’t even make an all done pocket. I put them at the top to cover the days of the week so the extra text wouldn’t cause any confusion, and that turned out to be a great idea.

As soon as I walked into the Little Guy’s room this morning, he said “I’m trying to sleep!” I said, “But I made something for you!” He wanted to see it right away, so I turned on his lamp. He looked at the first one and said, “Wake up, check,” and moved the card to the lower portion of the dry-erase surface. Cool, the problem of what to do with the finished ones is solved and I am glad I didn’t just put them in the center of the board.

We went through the rest of the routine in record time, including going potty and eating breakfast – he even improvised a morning picnic for us on a blanket that I had left on the living room floor. When we got to the last item, car, he made me carry the schedule out to the car so we could check it off when we got to daycare. Another thing, he was willing to take a movie today!! (On Fridays, his class can bring DVD’s and they vote on what to watch; the Little Guy usually won’t take a video because it is too upsetting if they don’t pick his.)

As if this isn’t enough good news, this morning the TSS mentioned that LG had really wanted to go back to the pet store they visited a couple of weeks ago and asked if she could pick him up from daycare, so I have another 2 hours to work extra and/or be home alone! Then tonight we have someone coming for respite and are meeting some friends for dinner. I was still feeling very tired this morning, but now I feel totally energized. Hope you all are having a great Friday as well!!

Well, it has finally happened – the Little Guy has discovered the joys of Chuck E. Cheese’s. He had been there twice before, at least a year ago, but wasn’t able to play most of the games at that point and hadn’t understood the connection between playing games, getting tickets and redeeming them for prizes.

Then last Wednesday, Hands-Free Heart calls and says she is making an emergency stop at CEC’s and do we want to join them, since we live close by and the boys are great pals. So we go and have a wonderful time playing games and collecting tickets. When it is about time to leave, we look over the available prizes and, to my amazement, he decides to hold on to his tickets until he can earn enough for a better prize! Wow, can anyone say impulse control and delayed gratification!!

From there, we are on our way to music therapy and he happily gets out of the car, goes into the building, stops at the bathroom and enters the therapy room, all with not one complaint (this has been a big issue for a while now). Mom & therapist are both very happy

Friday there is a make-up session for music therapy, but the TSS also has hours to get in, so she takes him from daycare to CEC’s, and I pick him up in time to get to music. By giving the tokens one at a time and requiring him to answer what game he was going to play and how to play it, she got some great responding to questions out of him.

Getting to music was again stress-free, so now we are working on a plan to use these little golden reinforcers to motivate some of the behaviors we are looking for. Of course, I don’t want to take the joy out of a fun childhood experience, but you have to use anything that works as long as you can!!