Can you believe the first month of 2012 is already ending? I am even more amazed when I look back at all the things that have happened.

Almost two weeks ago, I arrived home after work to receive the news from my son’s babysitter that he had found another part-time job and his last day would be that Friday – not a fun conversation, for sure! I initially thought I would go back to Care.com (which I love) and look for another person to pick him up from school and watch him for those two hours, but then it occurred to me to check with the after-school program that is run in our school building by the YMCA.

Thankfully, the Y program had an opening, although they needed me to fill out a ton of paperwork and give them a week to process everything. So I called on another mom whose daughter is in Michael’s class, and she was willing to watch him after school for the entire week in between. Such a blessing! We actually attend the same church, and she has since offered to be his fill-in buddy if they ever need her for children’s church.

He did a great job at their house, with only minimal whining here and there, and then he started the Kids’ Klub yesterday. Not only are they accepting of children with disabilities; they have even asked for a copy of his IEP so they can reinforce his behavior goals and also access any grant money that may be available to purchase things which would support him there, such as fidgets or headphones or whatever.

In the midst of all of this, I got a notice from the Dept of Public Welfare that his MA benefits would be ending because they hadn’t gotten all of the paperwork needed for his annual renewal. Well, I had done the renewal only at the end of November and faxed everything they requested with the eform # clearly visible on each page.

Nonetheless, I had to call the state support line and have them open a ticket to ask the county office to look for the fax. I got a call three days later asking me to refax the documents they needed. I am hoping all is taken care of because God only knows how he would get through school without his TSS. Don’t you love bureaucracies?

At least I have cut back on most of my commitments outside of work since I went back to full-time hours, so all of this is not sending me completely over the edge. My biggest time commitment right now is reviewing for 5 Minutes for Books, which I am really enjoying. Not only am I getting to read a great selection of books, but my writing skills are getting a bit more of a workout, which is always a good thing!

How about you? Was the first month of the year calm or crazy?

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I actually ended my year with a fun-filled trip to the vet, complete with cats escaping from the carrier before I could get them out to the car and lugging said carrier with 27 lbs of cat inside into the building for their exams.

We were there quite a while, and after much exploration, Wallace and Willow found an empty cabinet that they seemed to like! (Sorry about all the shadows; I am not much of a camera person and this was on my itouch anyway.)

Michael started the year with a new reward menu at school. We have increased the time it takes to earn a checkmark from six minutes to ten, but we also cut the point value of all rewards in half and added some new rewards that he seems quite excited about.

One of the new options is to help with the morning announcements, and he spent a good chunk of the week earning this. He was so excited about it, and he did a great job! The first picture is of Michael reading the opening lines before turning it over to one of the seasoned vets, and the second is all three of the kids saying in unison, “Let’s all be Paxtang Proud!”

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I wish I had taken a “before” picture, but anyway, here’s the finished product:

Thank you to my friend L. for the use of her button collection, as well as her magical glue dots!

Oh, and in case you couldn’t tell, he’s a bus driver!!

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This month’s Best of the Best topic is on the use of medications: Have you used them with your child or considered using them? If you have used medications with your child, do they help or have they helped? Have medications been recommended but you’ve avoided them and why? Have you had a difficult time finding a qualified pediatric psychiatrist to monitor your child?

I am assuming from the last question that the focus of this topic is primarily on psychiatric medications, as this is the category most people are referring to when they say, “I would never medicate my kid,” or “The schools, or doctors, or nameless, faceless bad guys just want to over-medicate our kids!”

Frankly, I cannot really address this topic on any sort of large scale, being a parent with a non-medical background, so I am simply going to share what our own experience has been with the use of psychiatric medication for our son.

I’ve written a bit over the last few months about our own journey on this front, here, here and here, so I’m going to be referencing some of what I wrote previously as well as sharing where we are now with it.

A psychiatric medication was first suggested to me in the spring of 2009 by my son’s OT, who felt that he would need it for anxiety. The facts that he was only a kindergartner at the time and that the suggestion came to me from a school team member rather than a medical professional caused me to have a very negative reaction to the idea.

In the spring of first grade, Michael had some extreme behavior problems, and the school was asking about it again, so I began taking him to a psychiatric nurse practitioner to get an informed opinion from the appropriate professional, if only to make them stop bringing it up.

With her help, we first worked with the school and his psychologist to address his issues without medication, and it was only after we got to the spring of second grade and saw the same types of major issues that I agreed to consider a medication trial. By this time, we had also had a full evaluation done (for the first time since he was 5) and were given independent recommendations regarding medication from that source as well.

At that point, it was May 2011, and here’s part of what I wrote about the whole idea:

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.

After discussing the specific issues that Michael was facing and the pros and cons regarding medication for each of them, we decided to do a trial of Risperdal for his mood instability, with a follow-up two weeks after starting the lowest dose. We also did not tell anyone at the school except for the nurse about the trial, so that we could get some objective feedback on how he was doing.

Surprisingly, we saw an improvement not only in his mood, but also with his ability to organize his thoughts. Here were some of my comments at the time:

After two weeks, we have not seen any negative reaction to the meds, and we have seen some positive things that cause us to be cautiously optimistic about it.

He has been more communicative with us, sharing stories about what happened in school and expressing concern for his dad’s feelings. He also came up with a plan to do chores to earn money for a video game that he wants!

Things continued to improve as we reached the halfway point of the summer months:

He has been on .2 mg of risperidone since mid-May, and we have continued to see a huge improvement in his mood, as well as more flexibility and organized thinking.

During his two weeks at the babysitter’s he only had 2 or 3 outbursts, and only one of those included aggression. And he has only had 3 aggressive incidents during the first four weeks of his summer program. This is a huge improvement over how school was going and is even better than he did last year at the same sitter and program.

Going back to school was the biggest test, and even that has gone remarkably well. Michael has met his goal with regard to timeouts at school both months so far, even with his full-time aide leaving to take another job and the agency/school scrambling to cover even a few of the hours.

Because he responded so well to the smaller dose, we did not increase it at all and he is continuing at that level even now. As long as it continues to work well and there are no adverse indications from the twice yearly blood tests, we plan to keep giving it to him for at least a year before deciding on the next steps.

My best advice if you are considering the use of a psychiatric medication for your child is to find a qualified professional with strong knowledge and experience in this area, clearly identify the major issues you are dealing with and implement any non-medication related suggestions that may resolve them first.

If you do decide on a medication trial, have a clear time frame and know the criteria you will be using to evaluate the outcome and make the decision regarding ending it, continuing it or changing it in some way. And remember this is not a once and done decision, but an ongoing question to be answered as many times as necessary based on your child’s best interests.

Note: This post was written for the S-O-S Best of the Best, Edition 12: Medications and Their Use with Special Needs Kids, which will be published on November 15th.

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So, please take this as a reflection of my thoughts about our personal situation at the moment and not an editorial on how anyone else should think or act with regard to their own child.

Third grade so far has been a highly positive experience for all of us. Michael’s teacher is extremely good, and the whole team seems to be working together quite well towards the goal of encouraging Michael towards more independence in his organizational skills as well as self-regulation.

Of course, there is always the tendency to move too fast towards lowering the level of reinforcement and support. When people see success, they seem to want to breathe a sigh of relief and say, “Okay, that’s taken care of.” But I see it as a much more gradual process. I think the first sigh of relief should be that we have found a level of support that is appropriate for him right now and that we should continue at that level until he is clearly showing that he doesn’t need it so much.

When anyone on Michael’s team mentions pulling back in any way, I tend to panic and react negatively to the suggestion, not because I don’t have the same desires as they do for his independence, but because I instinctively sense that he needs an extremely gradual transition towards a different kind of support than he is currently getting.

(Ironically, the day after I wrote this the Learning Support Teacher was talking about lengthening the interval at which Michael earns checkmarks toward his rewards. For now, we are just going from 3 minutes to 5 minutes, so that should be a negligible change for him.)

Notice that I say “different kind of support.” He will still need support from other people – we all need that in our lives.

One reason for this is because of his maturity level, especially in terms of emotional and social functioning. Another is that he is not at the point where he can always identify when he needs additional help or ask for it if he does realize it. That skill is one of the most important ones I can think of for him to learn, actually.

As I am writing this, I am thinking that another thing I need to emphasize more with him is that everyone needs help and support from other people, to varying degrees based on what is happening in their lives. Pointing out to Michael when others are asking for help or making mistakes or struggling to learn a new skill helps him see that everyone has difficulties at times and that it is actually a sign of maturity to know when to ask for help.

I think a lot of his “self-regulation” issues come down to this perception that he should be able to do everything right and win all the time and understand everything immediately, and that when things don’t go the way he expected, he has trouble identifying what is happening and then either communicating it to someone or figuring out what to do about it.

So (and pardon me as I use my writing to think through the issue), perhaps my focus should be more on helping him to notice and understand what is going on around him so that he can engage in more communication and interactions that are meaningful for him.

This may sound sort of touchy-feely, so let me say that I definitely think it is critical to provide clear instruction on “expected behaviors” and related topics, and that using tangible reinforcements for motivation on non-preferred tasks meets his needs at the moment. And these strategies are incredibly useful to get through the school day, and for structured events in the home and community.

Sometimes I wonder if I am being hypocritical by advocating for such a high level of support at school, while tending towards a more natural interaction at home. But ultimately I don’t think I am, for several reasons:
1. School is by its very nature a more structured environment, with many people who all need to work together in a safe and responsible manner to accomplish specific goals.
2. There is less time and opportunity to provide the in-depth explanations and time to process situations within the constraints of the school day.
3. A teacher with a class full of students cannot possibly attend to all of the signals that Michael may not be paying full attention or understanding the dynamics of what is going on or even that something is upsetting to him. (His current teacher is by far the best at this that I have seen, but it’s a completely different situation than him being with just me or with a therapist one-on-one.)

Recognizing these things has helped me gain a better perspective for myself on what I advocate for school supports. At home, I may not need to provide such a high level of reinforcement*, simply because I am able to focus more intently on his needs at that moment, whether it be adjusting the environment or having an in-depth conversation about perception versus reality.

At school or in a more structured community setting, he needs the higher level of reinforcement to motivate him to accept what is happening around him or what he is being asked to do as necessary, even if he doesn’t like or understand it completely. And learning that different situations and environments have different rules and expectations is a good thing too.

Edited to add: *Re-reading this, I think I should say I don’t need to provide as much tangible reinforcement such as physical rewards or a token economy, but can rely more on social and emotional reinforcers.

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This month’s topic is on helping special needs kids to calm down and/or refocus after a meltdown or stressful event and asks, “What works for your child?”

For this question, I thought I would go straight to the source. I interviewed Michael until he said it was too boring to talk about anymore and got a few ideas of what he finds the most helpful. So here goes:

• A hug or a squeeze – “nice and tight” is best.
• Snuggling on the couch or his bed. (I sometimes turn his music on as well, but he said that is for bedtime, not for calming down.)
• Tickling or doing something funny to make him laugh. He said this makes him happy, which helps him calm down.
• Having Mommy explain what is going on so he won’t be confused. (Many times his meltdowns are triggered by misunderstandings or not stopping to realize that something can easily be fixed.)

He also said the first step is to stop him when he is whining. And he’s right, it’s so much easier to head off a meltdown than to actually recover from one.

Note: This post was written for the S-O-S Best of the Best, Edition 10: Calming Techniques for Stress and the Special Needs Child, which will be published on September 15th.

I apologize for the short post this month. We got a ton of rain after the hurricane went through and ended up with almost two feet of water in our basement. We have spent several days sorting and tossing stuff, as well as doing a major cleaning.

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The school year is off to a pretty good start so far, although of course we are only two days in, I know!

Michael’s case manager met him at the door on Monday to walk him up to class and make sure he got started okay. His TSS showed up about the same time we did as well, so he was pretty happy heading in, as you can see in the photo.

The first couple of days seemed to go well with regard to his classroom teacher. There were a couple of outbursts, one at recess on Monday and the other in art class today. Both were in reaction to someone saying one thing and then changing the plan – so not too surprising.

For me, the nicest part is having a good working team. Several of us met this afternoon to touch base, and we were able to go over a number of questions and concerns pretty efficiently and all still leave in a good mood.

The third grade teacher has greatly impressed me already as being extremely proactive and flexible in her approach to meeting Michael’s needs within the classroom. Best of all, she seems quite willing to discuss things and balance her expertise with the opinions and information from me and the other people on the team.

The autism specialist is going to be doing a sensitivity training for the third grade students in September, and I think that will be a big help going into this important year. She has a video she likes to use, so we are going to let Michael watch it at home and decide if he wants to be in the room when the class views it and has their discussion.

Oh, and another great thing is that he has the same phys ed teacher as he had in first grade, instead of the one from last year. The teacher during second grade just didn’t seem to exactly “get it,” if you know what I mean, so I am definitely happy about this news.

While we have had some rough times in the past and will certainly have them at some point in the future, I am just so thankful that we are getting off to a good start this year!

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And yet, every year I somehow find a bit of hope – hope that this teacher will get him and be patient with his needs while also seeing the ways in which he could excel.

We went for a classroom visit on Friday and was pleased to find that his desk was ready, almost all of the visual supports were in place, and the teacher was familiar with the IEP. Such a relief, especially compared to some previous years. By all accounts, she runs a highly-structured class without yelling at the kids (as some others have been reported to do).

I was also impressed that Michael’s break spot is actually the same spot that she has used for years with the entire class. Any student can request a break, and she has even used break cards for students who seemed to need the visual/physical cue for it.

All that remains is to get him there on Monday morning and hand him over once again.

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We were supposed to drive an hour the other direction for a family reunion before coming up here, but Michael was so upset about getting here late at night and then having to go to the conference first thing Monday morning that I decided to bring him up early enough to play with his cousins today. They have been happily ensconced on the Wii for the last hour, although from what I can hear at the moment, he is not too happy about losing a MarioKart race to his cousin Jake.

I am so thankful for the hospitality of my brother- and sister-in-law, who happen to live less than 10 minutes from the conference center, and that the fee for a PA family member is only $25 for the week. Quite a bargain for the amount of information provided, even when you take into account missing a week of work!

The conference kicks off with a session on Autism, Politics, and Law by Lorri Unumb. She is a lawyer and parent of a child with autism who has been heavily involved in advocating for healthcare coverage for autism therapy. I am also attending a parent advocacy session with her later that day, so I am hoping that she provides some useful information for me.

I am especially looking forward to a couple of sessions later in the week – one on Motor Planning and another on Adapted Physical Education. These are areas that I haven’t heard much about and could definitely use some guidance in.

At previous conferences, I have tended to focus my time more on communication, social skills, sensory issues, and educational strategies, but this year I am going in a bit of a different direction. In addition to the parent advocacy session on Monday, I am also going to a legal issues session on Wednesday and a Thursday session on evaluating autism treatments and distinguishing science from pseudoscience.

I am hoping to have lots of great stuff to report here as well as to help me in moving forward as an advocate for my son as well as for other families I encounter along the way.

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Michael with his Lego Creation

During his two weeks at the babysitter’s he only had 2 or 3 outbursts, and only one of those included aggression. And he has only had 3 aggressive incidents during the first four weeks of his summer program. This is a huge improvement over how school was going and is even better than he did last year at the same sitter and program.

As the summer progresses, I have seen a bit more whining and emotional outbursts, and he seems to be nervous about going back to school in a few weeks, but at least we are able to have conversations about it and talk about ways that he could handle how he is feeling. I was just sent a book to review from Future Horizons called Exploring Feelings: Cognitive Behavior Therapy to Manage Anxiety. It is by Dr. Tony Attwood and includes a workbook section that I am planning to do with Michael.

His summer program goes for one more week, and then he and I are going to the autism conference in State College the first week of August. It will be great for Michael to participate in their children’s institute, and then he will have two more weeks at the babysitter’s. Bob got off work the week before school starts, so we will have a short family trip and then they will go down to help with Bob’s mom for a couple of days, and somewhere in there we will schedule a visit to the school to meet the teacher and see his classroom for third grade.

I’m not sure what happened to all of my goals for the summer – we are only a third of the way through the summer packet and haven’t made any progress on keyboarding skills or even on tying his shoes. I’m not complaining, though, a relatively peaceful summer is a wonderful thing and I am truly thankful for it.

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