The Road to Mainstream Kindergarten: School Visits


One of the ideas brought up by the preschool teacher was to try and visit the elementary school before summer time. The intent was for C to see how the classroom works so that it wouldn’t be a complete surprise in August.

Visit 1: Morning. This was calendar time, which we feel will be a strength eventually, but while he was tuned in and able to keep up for a lot, he was wanting to wander around the room and see everything.

Their perspective: He couldn’t sit and attend to calendar time entirely, but he did enjoy it and was able to count up to 160 (how many days they’d been in school) with the class.

My perspective: I was totally fine with him not sitting still the whole time and feel that it is natural for him to want to see everything in a completely new environment.

Visit 2: Afternoon. The teachers wanted to see how he would do sitting at the table working.

Their Perspective: He found a second exit from the bathroom and “ran away.” I was called to come get him.

My perspective: in the 2 minute drive, I had come up with why he had tried to run away, which was that he had never been given the chance to see the building; there was no tour or explanation. I never heard how the work part of this ever went, but he was only there about 20 minutes before the class bathroom break.  Apparently, he was actually missing for a few minutes (this building is a huge maze) so by the time I got there, he’d been lost, found, and then in and out of a meltdown because he didn’t understand what was going on. My guns blazing and telling these staff members they were going about this all wrong was not exactly received well right away, but talking to his current teacher and the autism consultant helped them understand what I was meaning better.

Outcome: it was determined that a tour would be helpful, so it was scheduled for the following day, after school hours so things would be more empty.

Visit 3: Tour. His current teacher, the autism consultant, and I walked around the building with him. He had some places he wanted to go, but was able to continue on the tour without trouble (though we did have to spend some time in the library looking at the fish).  We also spent a little time in the classroom talking to his teacher for next year.

Their perspective: this “might” help.

My perspective: This will definitely help at least a little.  He was able to see the main parts of the building which could eliminate his desire to wander. Now if he does wander, they will have an idea what places were interesting to him and can check there first.

Visit 4: Lunch.

Their perspective: just his current teacher was there and so the two of them sat at the end of the table of current K students. She said he was very happy and she was so glad to have a relaxed and happy time with him since things have been so demanding lately. He sat and ate his lunch, but was sad to leave because he thought he was going to the classroom (the K teacher said it was time to go back to the classroom).  His teacher for next year was trying to help get him out the door.

My perspective: this was an area he succeeded in! The other 2 kids and I sat in the car and hung out since we didn’t expect this to be longer than the brief lunch period.  While I wasn’t happy to have to collect him crying from the front doors, we had had a minor victory, and it is also good that he wants to be there.

Overall, I’m not sure how big of a difference this all makes. We skipped a final visit that would have been in the morning again. I would have liked to see if he did better having knowledge of how it all worked, but ultimately we decided he probably wasn’t going gain anything from it.  His teacher for next year should be a good fit, and oddly enough, was my youngest brother’s first grade teacher many years ago!


The Road to Mainstream Kindergarten: IEP Meeting


We had our annual IEP (Individualized education plan) meeting/case conference near the end of April.  Special needs kids with IEPs get annual reviews around the time of year when the document was first created.  For us, it is very close to our son’s birthday since that was when we were transitioning from First Steps to the school system.

At the meeting, we were joined by nearly all of the people who currently work with our son in the school setting: the classroom teacher, OT, SLP, autism consultant for the district, and also the director of the school (standard procedure).  All of the past year’s goals were reviewed and progress (or lack thereof) was noted. Overall, we were very pleased with the course of the last year and most of the people at the conference could also see the big improvements.  We also discussed current setbacks, issues, and the road ahead.  While our little guy is super-smart and will most likely be running circles around his peers academically, the behavior component is not where it needs to be in order for him to succeed in a general education classroom.  Our personal estimate is that he’s a good 2 years behind developmentally, as we have an almost exactly 2 year younger comparison living in our house.  This is where the ABA therapy can really help us.

We assumed that new goals were to be set that would carry into kindergarten, but that was not the case.  Instead, there were just slight modifications on the previous IEP to carry us through the end of this school year and a future “transition” meeting with the necessary adults from the elementary school would cover kindergarten appropriate goals.  The bottom line from this meeting: none of us are ready for what is coming in August.

The Road to Mainstream Kindergarten: ABA Therapy


After many many months of waiting for insurance and billing hiccups, we started ABA (or Applied Behavior Analysis) therapy with C.  ABA is a type of behavior therapy widely used with autistic kids to help them learn appropriate behaviors and eliminate problematic ones.  We are very hopeful that this is a good course for us as we try to assimilate as much as possible to a mainstream school setting.

Initially, therapy was 6 hours a week.  After a month or so, we noticed that problem behaviors were creeping back in to the school setting and home.  I feel that it was due to him wanting to find something he could control, so he started acting out in those places since he couldn’t at therapy.  The suggestion to us was to bump up the hours, something I was hesitant to do because I wasn’t sure how our little guy would handle a full day of hard work with both therapy and school.  He is currently attending therapy every morning to total 15 hours, and school 4 out of 5 afternoons.  Needless to say, he is a busy and tired boy.  But, 3 weeks in to this new schedule, he is handling the heavy load very well.

Since the hour increase, it seems as though things are getting a little better.  The tantrum-type scenarios are shorter and shorter in all 3 settings, and he has relaxed a little bit.  At home when he really wants something, he is more accepting if the answer is “no” or “not now.”  Once school is over next week, we will be bumping up hours again to our max approved by insurance to 25 throughout the summer months.

Autism Awareness Day 2014


Another year down.  One year since we shared our news with “the world.”  It seems like nothing has changed and everything has changed at the same time.  In many ways we are still exactly where we’ve been with all of this for the last 3 years, but in stepping back a little bit, can see all the changes that have happened.

Since 2014, we have noticed more speech.  There’s more conversational skills, though most speech is still an attempt to get someone’s attention or get what he wants.  There is more interaction, in general, and he loves to check what his siblings are doing, say good morning to people when he wakes up, greet family and friends when he sees them….it has been so nice to see that developing.  He responds really well and usually right away to commands and requests.  He’s able to do simple chores, and clean up after himself (even without reminders!).  Overall, there is more self-control, but things can still spiral very quickly when frustrated.  He still wants what he wants when he wants it, but is able to keep himself from a full meltdown if he tries really hard.

At school, he has been working very hard on behavior (as the academics are still coming very naturally and easily to him).  We had to come up with some new tactics to manage behavior because he was having some very strong reactions to being told no and also transitioning to another activity.  The changes made have all worked really well and he is having very successful days at school with minimal time outs or correcting needed.

Another change (and this is a biggie!) is news from the potty training front: he is fully daytime potty trained.  WAHOO!!  The process that started in November of 2012 has finally rewarded us.  We still aren’t sure what finally clicked or why, but it doesn’t even matter because it did.  There was a real chance for back sliding as a fast and furious flu bug hit our house less than a week after he started using a toilet all the time, but he maintained his new skills and we couldn’t be happier!  He has even been ok at school, which takes a HUGE kindergarten concern off our plates.  I don’t even care about night time training at all at this point because I am so glad for the full daytime undies.

Other big changes are the addition of glasses, as we recently found were necessary, and the beginning (FINALLY) of ABA therapy sessions!  We are really looking forward to see how these 2 things especially help our baby grow and thrive.  Luckily for all involved, he loves both the glasses and therapy quite a bit!

We have seen some great triumphs, shared many grins, giggles, celebratory treats, hugs, and high fives in the last year, but also had setbacks, heartaches, and challenging moments that felt like they could swallow us whole.  There’s still a huge gap between our son and kids his own age, and that is sad and difficult, but it is our reality.  Many of the fears we had a year ago still are fears today, and new ones creep in all the time.  For example, we have tried to really focus in on him being able to respond to questions like “What is your name/address/phone number?” because if something were to ever happen, we were separated, or he eloped from home, he has to be able to answer those clearly.  Scary, but at least he has been gaining ground and has them mostly memorized at this point.  We are also working diligently to help him be as socially and behaviorally ready for kindergarten, which is just a shocking 4 months away.  As always, there’s still work to be done!

On this World Autism Awareness Day, we hope everyone takes just a moment to think about the many people in our world who are living with or affected by autism.  We also hope that people don’t just spread awareness but also acceptance.  And if you feel so inclined, Light it up Blue!


1. 30 Days of Autism Action Ideas to Help Friends and Family

2. Stats about Wandering

3. “Not So Different” article and song

4. 68 Things

5. 33 Resources



Didn’t Want to Jinx It…


Here’s a draft of a post I had started this past summer.  I had it in the hopper because I didn’t want to jinx how well things were going at the time and I was about to have a baby…

…..but, the summer has been going really well.  I really wanted things as planned out as possible to hopefully eliminate stress, tantrums, too much tv/iPad use, etc…and I think it has worked out as well as possible thus far.

We did get Buggy on a fully gluten-free diet.  The first 2 or so weeks, not a darn thing changed.  According to people who have done it before/do it always, you could see immediate changes, see no changes for months, see changes after a few weeks, see no changes ever, or it takes up to 6 weeks for everything to officially leave the system….sheesh.  Talk about a variety of outcomes.  We saw our first differences after about 3 weeks.  All of the sudden, there was a little bit more talking coming from him.  Some of it was still echolalia, but we were getting more complete sentences and incorporating of peoples’ names.  We have noticed more engaging of other people….wanting to do things together with others/ have others joining it to what he wants to do, or referencing wanting to go places and see certain people.  He has also been super duper happy.  He’s always a pretty happy kid, but it’s like rays of sunshine coming from him 95% of the time right now.  Maybe it is because these adjusted foods make him feel better.  It could also be the more relaxed summer schedule, getting outside every day, or just growing up a little bit.  But we are certainly rolling with it!

He has been through one week of summer “camp” (for lack of a better word…it is basically a play group that focuses on social skills and some academics to bridge possible gaps between school years.  It is the program that was created because I asked).  It was incredible to watch him transition to a new place, new instructors, and new peer group seamlessly.  I was in tears the first day just thinking about how terrible it was going to be.  But he completely surprised me.  He has gone to camp happy every day and left happy as well.  We have 3 more weeks of it at various times before school resumes, so that should be nice to keep him attached to a routine.

Now we have the task of keeping this great stuff going.  There are going to be some big changes soon that will certainly rock our kids’ world, so hopefully it doesn’t totally throw everything off kilter…at least not for too long.

Overall, things went SO well with the diet, that we were convinced it wasn’t the diet at all, and after the adjustment to the school year was over, we dropped it.  Nothing crazy happened right away, so we were feeling a little relieved to not have to modify things/seek out alternate foods/spend so much more on groceries.  Then the other shoe dropped…..It didn’t happen dramatically, but gradually over the course of a week.  Bad behaviors started creeping in, and by the end of the week, I was pulling my hair out trying to keep him under control and reign in super-amped up craziness.  We think now that the reintroduction of gluten must’ve just made him feel so out of whack that the only thing he knew to do was to act out.

Now several months in to the diet, we still aren’t convinced that it is perfect, but that it does certainly make enough of a difference to continue.  Plus, since it’s been so long, we’ve done pretty well adapting his favorites, and I like the baking aspect.  Still wish it had been a magic bullet, but…

The summer camp was amazing as well.  He loved it so much and there was very very little adjustment to a new place, instructors, and routine that we are still surprised.  It was also nice that he still had a week and a half left to go when his baby brother arrived, so there was a good distraction and interaction with others when it got hectic for us.  Hopefully (after another long insurance standstill) he will get to start his 1-on-1 therapy there soon, because he still asks about going there all this time later!