I cannot tell a lie

I haven't been posting much because I am finding it hard to be all "sunshine-y" right now. Jack's behavior has gotten worse recently and we're really struggling with how to handle it. I've always told myself that "things will get better" and have the mindset that he'll just grow out of most of this...but lately I've had the realization that things might not get better. Things might stay the same. Things might get worse. Jack will get bigger and stronger and smarter.

His listening skills have gone way down. He doesn't listen to most of the things we tell him or ask him to do. He yells and screams A LOT. He throws many tantrums throughout the day. A lot of what we say doesn't "register" with him and we get a lot of blank stares. Parts of his communication have improved, but other parts seem to be regressing. It doesn't seem to matter how we talk to him or how we discipline him - things just keep getting worse. It doesn't matter whether we talk calmly to him or if we yell at him - he reacts the same way. It doesn't matter whether we put him in time-out, try to re-direct him or ignore it - he reacts the same way. He yells and screams. And then he screams and yells some more. We spend quality time with him. We play with him. We read to him. We have a pretty well-structured day. We give him plenty of warnings as to what activities come next. We give him reasons. We love on him. We keep his routine consistent. We talk to him all of the time. And it seems that none of that makes a difference. His behavior (even if it is completely unintentional on his part) is like a slap in the face to us. We TRY. I wish there was an easy solution to this.

What makes this even more difficult is that no one else sees this. No one else sees the way Jack acts at home. He acts fine at school. His teacher has mentioned that she can tell he's "holding it together" at school...just because he's at school. He's absolutely adorable when we're in public and he smiles and says "hi" to all of the people. He's a ham at the doctor's office. Everyone just thinks he is the cutest kid ever. But once he's told something that he doesn't like or doesn't get his way or gets upset over something (that is invisible to us), he turns into a different child. And, let's be honest, you can't let a preschooler have their way all of the time. We still need to be parents.

Autism sucks. There's just no other way to put it. We have so much to learn and so much to figure out. We feel lost. We are tired of being yelled and screamed at. We are tired of repeating the same instructions hundreds of times. We are tired of not sleeping well. We are tired of the tantrums. Lonnie and I are just so, so tired.

About that...

I realize that I was a little vague in my post about Jack's diagnosis of Asperger's and his starting preschool. So, I will try to be a little more specific this time. :)

We first started noticing that things were "different" about Jack around the time that he turned 2. He screamed a lot when he couldn't effectively communicate and he was a very difficult toddler. He often played by himself and was rarely interested in what other kids were doing. A lot of things just seemed "off." But, we decided to wait until he was 3 to pursue anything - just to see if we were dealing with normal toddler "quirks" or something else.

By the time he was 3, things were getting worse. He has a large vocabulary, but doesn't quite know how to use it correctly. He says things that don't make sense. For instance, I will ask him "Jack, is that a good cookie?" And he will say, "Did you wait for the bus today?" Almost everything he responds with is a question. He has a very difficult time answering questions. If someone asks him "What is your favorite color/cartoon/toy?" He has no idea what to say back to them. He has a lot of sensory problems. He hates trying new things. We have to listen to/watch the same songs and movies over and over and over and over again. If we try to introduce something new to the mix, we encounter huge tantrums and fights.

Why haven't I mentioned anything on the blog? Well, I like to keep things somewhat light on the blog. A lot of family reads the blog and I don't want to take up a lot of time venting about problems we're having with Jack and what a difficult child he is. Plus, people have a lot of opinions about Autism and "labeling." We've encountered several negative attitudes about Jack going through evaluations and being put in preschool. So, I try to be careful about who we talk to and what we share. This is a time when we need encouragement, not criticism.

To an adult that doesn't spend much time with Jack, he appears to be a pretty normal kid. He laughs and is silly and says a lot of words. He is very comfortable around adults. He says "hi" and smiles. But, if you spend some good quality time with him, you can see that some things just don't "click" with him. So, we're working on that. School has been fabulous. He is doing so well and is really enjoying his time there. We've already noticed some progress with his communication...that has been very encouraging.

Sorry if this post is a little choppy. I'm trying to organize my thoughts and put out as much information as I can...but I feel like I'm not doing too well with that! :)

If you'd like more information on Autism/Asperger's, here are some great links...

http://www.autism-society.org/site/PageServer?pagename=life_aspergers

http://www.autismspeaks.org/navigating/index.php

http://maapservices.org/Publications/Stephen_Bauer_Article.asp

The thing I haven't really talked about yet

At Jack's 3 year well-child checkup, we filled out a questionnaire for the pediatrician, just answering questions about tasks that Jack could accomplish, his language/comprehension skills, and his overall development. As it turns out, he was pretty behind on almost all of the areas that were measured (4 out of 5). So, we were referred to ECSE (Early Childhood Special Education) which is through our local school district. Jack went through several evaluations, all done at our home, and they compiled all of this information into a report. He went through speech, psychological, autism and occupational therapy evaluation. After they were done with this process, we were informed that Jack meets the criteria for a diagnosis of Autism. Specifically, high-functioning autism, or Asperger's.

We experienced so many emotions when we received his diagnosis. We felt relief, because we knew that we weren't crazy and that other people noticed that there was something "off" about Jack too. We felt anger, because who were these people that barely knew our son to come in and tell us that there was something wrong with him? We were sad, because our only son was not "normal." We were guilty, because there's a part of you that wonders if you were the cause of these problems.

Jack's main symptoms include problems with language comprehension, echolalia (repeating what he hears us say, whether it's immediate or delayed), sensory issues, problems focusing, being very schedule-oriented, not being interested in other children, and having a hard time with transitions or new things.

All of this to say...Jack started preschool this week! He is going to the ECSE preschool, 4 days a week in the morning. He started on Tuesday. Today was his first day taking the bus. So far, it seems like he's really enjoying it. He really likes his teacher and she is an awesome lady. Today he actually named some of the kids in his class for me! There are 8 kids in his class (including him) and 4 adults...so he really gets a lot of quality attention. He meets one-on-one with a speech therapist and also gets some time with an occupational therapist.

When we dropped him off yesterday, he waved "bye" to us as he walked into the classroom and had a big smile on his face! When we put him on the bus this morning, he was so excited to ride the bus, but once he realized that we weren't going with him, he got a very concerned look on his face and didn't smile as they were driving away....but he did great and made it home safe and sound!

Here are some pictures of my BIG boy and his first couple days of school!!!

Standing at the front doors of the school.

Oh my gosh, he's gotten so big. When did this happen?

Putting his backpack in his cubby with his teacher.

Talking to the bus driver as his friends were getting off the bus.

Waving bye!

All buckled in! First time on the bus, today.