Ethan Update

It's been a long time since I have updated Ethan's situation, and a few things have developed/changed since I last did so.  Some good, some not so good, but it is what it is.  

We decided to withdraw Ethan from preschool and he has been working very hard in our home preschool for about three weeks now.  Both he and Jacob love it and so do I!  We get to spend a lot more time together, and I can focus on the skills that he needs such as writing his name, cutting, gluing, coloring, etc...  We not only work on the essential motor skills necessary to developing school success, but work on academics as well.  The boys know all of their shapes, colors, letters/sounds, days of the week, and can count to 20 (sometimes higher). Ethan is starting to read words on his own by sounding them out, and can recite songs and fingerplays.   It is a lot of fun, and the best part is, we can do it all in our basement on our own schedule.  

Some days, we venture out of the house and participate in activities with other children.  We attend preschool story time at the library once a week, where they listen to a story and complete a craft.  We also attend  the library's Music Makers.  In this class, we sing all kinds of songs, listen to a story, and use a variety of musical instruments.  Once a month, we will go to the tot class at our local children's museum.  Tomorrow is the class for September, and the focus will be on weather.  The email stated that it could get a little messy, so it should be fun.  We are busy, busy, busy, and for the most part the boys behave.  I have been surprised at how well they have behaved in each of the classes.  Jacob had one rough day (crying about a glue stick during the craft time), but all in all, it is working out for us.  Music Makers is their favorite because there is a lot of music and dancing.  In addition to these classes, Ethan goes to speech at the Rowe Center twice a week.

Now, on to the not so good stuff.  Not horrible, just not great.  Ethan has been having quite a few outbursts lately.  And by outbursts, I mean screaming fits that can last for an hour to an hour and a half.  It is very exhausting for all of us, and is happening more frequently.  We know some of the triggers, but they cannot always be avoided.  For instance, he has a routine of standing on the front porch and waving goodbye to anyone who leaves our house.  Mostly it's Daddy, but we wave to everyone else as well.  If for some reason, Ethan doesn't get a chance to wave, he has a colossal meltdown that can go on, and on, and on.....  That happened this morning.  When I got the boys up to take Megan and Carter to school, Ethan asked where Kenny was, and I told him that he was already at work.  That triggered the downward spiral that lasted an exhausting hour and a half.
Another situation that can trigger an outburst is leaving a place or event such as the park or children's museum.  We have to count down for Ethan.  We start out with "Five more minutes."  Then, "Four more minutes."  We count down until it's time to go.  If we don't count down, we aren't likely to leave without a meltdown.

Kenny and I went out to eat last night and discussed our situation a bit.  We both agree that it's time to have Ethan reevaluated by some experts from Riley Hospital.  The last time he was evaluated was over a year and a half ago.  It was that time, that we learned Ethan did not have autism, but was on the spectrum and should be monitored.  We were hoping that he would come off of the spectrum in time, but realize that this is not the case, and that he may actually have autism now.  The label of "Autism" doesn't bother us.  It will just provide us access to some of the support that is available to kids with difficulties like Ethan's.

Until we can get Ethan scheduled for a reevaluation, we will be implementing the "Autism Diet".  We don't know too much about it yet, as we are just beginning to research it.  We do know that it is gluten/casein free, which means no gluten or dairy in his diet.  A lot of kids with autism also have eczema, like Ethan, and this diet can help with flareups of that as well.  It will be a definite adjustment for all of us.  We are used to ordering pizza and getting donuts once a week, and will not be able to do such things with this diet.  It is a small sacrifice that we are willing to make to better help Ethan manage some issues that he struggles with.  I explained to Ethan this morning that his tummy is a little bit different than ours, and he won't be able to have the milk and other things that the rest of us might have.  I told him that he gets to have his very own "special" milk, butter, cheese and yogurt.  He was super excited about it, so I am hoping that he will take it fairly well. I told him that if he eats regular milk and cheese, it could make his tummy sick.  It was suggested on the autism site, to eliminate dairy first, and then to eliminate the gluten.  It can take as much as six months to get the gluten out of Ethan's system.  So, it will take at least that long to be able to see the benefits of the diet.  We will just have to patiently wait and see.
In any case, if you see us and we seem a little stressed out, we just may be.  It's okay though.  We know that raising a child, any child, comes with bumps in the road, and sometimes you take detours to get to where you need to be.  In the end, we will all get to our destination and the ride will be well worth it.