In So Many Words

Yes, I realize that I haven’t written about our lives much lately, except for telling you about all the wonderful books I’ve been reading! I will try to do better, but you may have to nudge me if I wait too long again.

I will say that April is a horrible month filled with mood swings and temper tantrums and IEP meetings. And contrary to what you might be thinking after reading that sentence, not all of the mood swings and temper tantrums are mine!!

At this point, we have had many conversations about how everyone is responsible for their own behavior no matter how they feel or what other people do or say to them (how dare the teacher read a sentence ending with an exclamation point without using the proper amount of emphasis!), and that there is no excuse for hitting, kicking or throwing anything (pencils, shoes, chairs, etc) at another person.

We have also started a new behavior plan at school, with more tangible rewards that can be earned within a day or less and a stronger visual component to show how he is doing. It is likely that we will be starting a medication trial soon, although I want to give the behavior plan time to be solidly in place first and I would like to get objective feedback from school without them knowing exactly when we start the meds.

Considering medication is a big step for me. It is scary to consider possible side effects, both short term and longer term that may yet be unkown, plus I keep wondering if there’s something else we could do that would help. I have even considered moving him to a more restrictive environment at school for part of the day. Although that may be helpful or necessary at some point, we do see the mood swings no matter what environment he is in, even when he is completely in control of what he is doing.

I’m not trying to defend my decision, simply sharing some of the thought processes that have gone into it. Right now we are looking at a two-week trial to be followed up by a discussion with the psychiatric NP to decide where to go from there.

With only five more weeks of school, I am starting to really look forward to summer. Michael will be going to the same babysitter he had last year for several weeks, who is a wonderful woman who also teaches high school life skills during the school year. He will also go to a Summer Therapeutic Activities Program (STAP) for five weeks, the same one he has attended for the last few years.

I am going to try yet again to get him into the Children’s Institute at the National Autism Conference in State College. They generally give preference to children who have not been there before, but since it has been five years since he went, I am hoping he might get in. I asked about it last year when I was there, and they encouraged me to apply again this year. Unfortunately, the registration info isn’t up yet, although the save the date flyer said April 30th.

Michael also really wants to get Hersheypark passes this summer. We didn’t get them last year, but he has grown enough to be a Twizzler, which means he can ride all 11 of the roller coasters now. (I will only get on 7 of them, but that’s beside the point!) We are trying to decide whether to get three passes so the whole family can go or just get two and take turns accompanying him to the park.

Hmm, I just had a thought – maybe I’ll get two for now and add the third later if we decide we need it. (See, that’s another reason I should blog more often, it helps me think through stuff and come up with great ideas!)

Well, enough rambling for now. How about you, are you looking forward to summer or dreading it?

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!!)

This has been a good day (or morning, I guess it’s just afternoon now).  I have been posting my to-do list each week on my other blog as part of the new To-Do Tuesday from Crazy Adventures in Parenting, and it is really motivating me to keep up with things better.  I highly recommend it if you are a list-oriented person; it’s neat to see the other participants’ lists as well.

I feel like for the first time ever I have a morning routine that is consistent and that I can handle.  It may not be impressive to some of you, but here’s what I am doing now:

* Get dressed & make sure Michael is dressed
* Make beds
* Pick up bedrooms (meaning clothes and anything else that has a home is put away; any and all piles of clutter are not being touched right now)
* Pick up den (incl. put ironing board away if Bob used it that morning)
* Wipe down bathroom (not really cleaning, just getting rid of the facial hair all over the sink, LOL)
* Clean cat box
* Do recycling
* Wash dishes

This has been taking me about an hour, including my shower, and then I feel so much better about moving on to other things.  It also is becoming easier to sneak other chores in, like putting in laundry when I go down to clean the cat box, or picking up the living room as I am checking on Michael in between tasks.

I also got a call from Michael’s BSC with the Summer Therapeutic Activities Program (STAP) info this morning.  They are only going to be five weeks this year instead of eight, so I will have to use other childcare for six weeks, but at least now I have the dates. 

I called the places to find out more about how the programs are structured and found that one of them is actually being done in conjunction with the place where Michael did his auditory integration therapy.  The great thing about that is they use Floortime and are planning to work on some of the higher level stuff this year, plus the person in charge of that aspect of the program already knows Michael from working with him before.

We can’t apply to this one until April 7th, since it is starting later than the other programs, but we can get all the paperwork done and be ready to send everything over on that day.  Now I just have to figure out the rest of the summer, and I have one lead already, so that is good.

I am feeling completely overwhelmed, especially at this time of year as so many programming decisions need to be made. We are still working on the transition to kindergarten, but for the moment my focus has shifted to behavioral health as we approach the start date to apply for a Summer Therapeutic Activities Program. This is our first year to participate in STAP, as it is more commonly known, and I hear it will be a mad dash once April 24th rolls around. Yikes, that’s next Thursday, and I am still not 100% sure the psychologist is on track for getting the addendum to his psych eval done as soon as possible.

I have spent the last two days talking to the STAP providers in our county, of which there are 8. Two are not specifically targeted towards autism, although one of those would take a child who is high-functioning. One of the ASD programs is for age 14-21, so that is out, and another hasn’t returned my call. So now I need to rank the 4 remaining programs, and that is one of the many reasons I am feeling overwhelmed right now.

Do I pick the one that is integrated with typical children but is mostly outdoors with swimming everyday and some team sports (both new to my child and likely very challenging)? It has a 4:1 ratio (4 campers to 1 staff) and has lots of field trips so requires a fairly high level of socialization and self-regulation, not easy to come by when you are faced with so many new experiences all at once. My gut instinct on this one is maybe next year, but I will say that the program director is very open and willing to work with each child on a case by case basis.

Two of the others are a 2:1 ratio and have once a week field trips with some incoming events as well (fire truck, etc) and incorporate some sort of curriculum involving individual learning in addition to social groups and arts/crafts (primarily used for following directions and fine motor skills, not for artistic ability). One of these is 2 doors from where I work, although that is not a big deal as transportation would be provided to and from home if he needs it. Both of these contacts were helpful but less enthusiastic in general; both are mailing me a brochure. They sound fine, but my instincts are this is too restricted an environment giving our intentions of a regular classroom for the fall.

The one that has really caught my attention has a 3:1 ratio, which might be a nice middle ground, and follows more of a preschool style curriculum in the morning, with circle time, different activities of 10-20 minutes each depending on the kids’ attention spans, includes sensory stimulation, arts/crafts and games with free play interspersed. After lunch, they usually go outside to local parks/playground (their office is in downtown Harrisburg right on the river so not sure exactly where they would be going for that).

This last one also has an afternoon program that he could go into when STAP is over, although the timing would be a bit tricky given our school district’s kindergarten schedule, and we may just decide to have him go to a half-day daycare instead. What is nice is that we can visit this program to get a feel for how they run things in general.

So, what I really have to do tomorrow is firm things up with the psychologist. If she is not able to be timely, I may have to have a whole new evaluation done at one of the other agencies, but then that opens another can of worms about the fall, which I can’t even think about right now. If the paperwork doesn’t get in quickly enough, which program is best will really be a moot point.

Thanks for letting me ramble – prayers and advice are welcome (and I promise to post another autism resource list tomorrow; I know I am behind on those). At least we don’t have anything other than church planned for this weekend, so we can all have a little time to decompress.