I had scheduled our annual visit with Josiah’s doctor in Michigan a little late this year so we weren’t able to get an appointment until mid-December. We were thrilled when his office called with a cancellation last week for yesterday (Monday, Sep. 21). We packed up for the 10 hour trek to Ann Arbor and left after Len’s Bible Class around 3:30pm on Sunday. The boys were a little bored in the car, but did fairly well for the first stretch. We got to the hotel in Madison about 7:00pm. The boys were so thrilled to be in the hotel and were so hyper and excited. They were running all around the lobby and then up and down the hallways. We let them have a bit of “hyper-time” and then tried to settle them down for bedtime. At home they are in bed by 7:30 and asleep by 8. Sunday night they didn’t settle down to sleep until around 9:30. We got up by 5am to pack up. We brought the boys to the car as the last thing, hoping of course that they would stay sleeping. As soon as we picked them up the excitement began and they were awake for the rest of the day.
We had a seven hour drive to go, and we were concerned about rush hour traffic through Chicago. Luckily Len had a colleague who loaned us an I-Pass to get us through the tollways in Illinois, and that saved us a lot of time. Unfortunately we hit a lot of construction and that slowed us down quite a bit. We (I) were stressed about the delays and didn’t think we could comfortably stop even though the boys were bored out of their minds. I finally pulled out the DVD player and that helped a lot. Our appointment was at 2 and we decided at 1:15 that we had just enough time to go through a drive-thru. You won’t believe this, but we pulled into the parking lot at Dr. Solomon’s at 1:54!! We had just enough time to change the boys out of their pajamas and rush them into the office. They were both hyper from the drive and ready to release some energy.
During the appointment Josiah displayed all of the behaviors that have proven so difficult over the last months. For those of you that don’t know, he’s developed an obsession that has been very hard to deal with. He has been open-mouth kissing/popping on adult’s clothing. This mostly happens with me and happens every time he sees me. The obsession increases when he is nervous, bored, uncomfortable, excited etc. So during the 2-hour appointment he was constantly coming over to me and doing this mostly on my breasts since I was sitting down. He couldn’t figure out how to entertain himself as no one was playing with him and he was pestering Asher as well. He was whiny and generally difficult. After talking with us and observing these behaviors, Dr. Solomon made the following observations:
The good news:
He has become very well socialized. He is referencing people appropriately, expressing feelings, trying to engage in interactions and has moved up the developmental levels. Last October, Josiah was barely at a level 5 (Shared Meanings & Simple Imaginary play ideas). This time he described him as well into Level 6 (Complex Abstract/Emotional Thinking) and said he has made phenomenal progress. He said this several times and stressed how intelligent he is and how good he is at reasoning. He said he is certainly high functioning and described him as having Aspberger’s Syndrome “with behavioral issues.” This is a huge improvement and what we were hoping for.
Areas of need:
He thought that although he his now well-socialized, all of the behaviors he is exhibiting are a result of having too much interaction. He felt that since adults are around him all the time attending to him and following his every cue, many of his behaviors show some infantilism. We have observed that he has little interest/confidence in most self-help areas and assumed it was a result of his autism/motor problems. Dr. Solomon feels he is doing little of what should be expected of a 5 year old at his level. He encouraged us to increase our expectations of him so that his confidence level will rise and he will be able to perform more activities independently. He wanted us to increase our strictness and respond more quickly to his misbehavior. Although he doesn’t currently exhibit these behaviors at school we worry that his behavior at home might begin at school, so we want to head that off. We intend to write our “house rules” and the consequences that follow for breaking those rules. Simply put, Dr. Solomon said we need to “normalize” his life. We need to stop coddling him because he has autism and start expecting more from him.
In the last 3-4 months, Josiah has also had a serious regression in his potty skills and now has 2-4 bowel accidents per day. This has been a major discussion within our staff and is a cause of great concern within our family. Dr. Solomon wondered about encopresis (holding feces so long that he no longer feels when he has to go) and asked many questions about his bathroom habits. He has encouraged us to get an x-ray to rule this out, although after he felt Josiah’s belly he didn’t think it was likely he had a medical problem. He thinks it more likely that the accidents are “on purpose” and a behavioral issue after all the changes in his life (Tom and Jenny leaving, training a new person, having so much company, etc.) To deal with this issue, he wants us to increase rewards for going on the potty and take away toys while we make clear our expectations we have of him. I purchased him a more advanced kid’s computer to use as a reward. He hasn’t had any accidents in the last 3 days so we will continue to work on that and hope that we have finally found the key. We will make a visual of all of this for him so he clearly understands our expectations for him on the potty.
Another big point Dr. Solomon made was that Josiah has outgrown the “following his lead” strategy that we’ve employed during the last 3 years. Now that he is well socialized and interested in people, he thought our program should be more focused/structured and that we should encourage more independence. He wanted us to structure our program more like preschool/kindergarten so that there are certain times for different activities. This will be quite a change as he is used to everyone doing what he wants to do. We will really need to research the best way to change our program to make this change as smooth as possible. As this approach will take a lot more planning, we plan to rely on our PCAs to help us. As they are in the education field, they are familiar with lesson planning and we are confident that they can help make this program successful for Josiah. Hopefully it will be more exciting for them as well as they will get to employ the skills they have learned in school.
All in all, we feel we made the trip at the right time and we are encouraged by Josiah’s progress. We were pleased with the feedback we received and the advice Dr. Solomon gave us. The real work begins now as we need to start planning and implementing a new program. We have many books in our possession already and have ordered more from the library to help with this new transition. We will rely on the expertise of our PCAs to help us as they put to use their training in elementary education.
Yesterday we took a trip to the local nursery for an event put on by ECFE. They had some games for the kids to play and then a hay wagon ride to the pumpkin patch. It was chilly and Josiah was a grumpy puppy for the first 1/2 hour. We had to wait about an hour for the hayride as we got there late and missed the first round. Luckily they had the greenhouse open with all these gorgeous mums that smelled so good. They had treats for the kids so that appeased Josiah some and we eventually got some smiles out of him. Len was sick so he stayed home, but Lara went with us and it was great to have her along. Both boys LOVED the hayride. Asher looked like he was in complete heaven being so close to a tractor. He had the most contented smile on his face! Once we got to the pumpkin patch, both the boys picked out pumpkins to bring home. Josiah picked the first one he saw and then said "okay, let's get back on the wagon." Asher picked a different variety - the surface is covered in bumps like a gourd. It is really neat and I'll post pictures of it later. I didn't get any good pictures of Josiah since he was pretty ornery, but I got some cute ones of Asher.
