University Hospitals has a series of Autism Seminars at their Westlake Campus. There is 1 seminar a month, and each deals with the different challenges of having a child with Autism. Although we don't have a typical "autism" diagnosis for Nate (part of his diagnosis is PDD-NOS), we felt that it would be helpful to attend several of these workshops.
The last workshop in the series was last night, and it focused on Social and Communication Issues in children with autism. The presenter was Dr. Lisa Audet, and she was AMAZING. Dr. Audet is a professor at Kent, she is a Speech-Language Pathologist (SLP), and also has her own practice in Speech Language Evaluation, Consultation, and Therapy Services. I was so impressed by her knowledge and professionalism, that I'd love to take one of her classes at Kent just so I can learn more about speech, language, and how to improve Nate's quality of life.
Dr. Audet started off her presentation discussing some common pitfalls that occur when working with children with Autism and who are non-verbal. For the most part the therapists that we have dealt with have done a great job working with Nathan, which is a relief. There are a few things that she highlighted that we can definitely improve on as well. She mentioned keeping conversation with an autistic/non-verbal child "real" and avoid saying things to them that you normally wouldn't say in a regular conversation. I admit that I do some of her no-no's when talking to Nate. I often tell him to "use your words", say "more" when he wants something, and I say "good talking" to him on a regular basis. When she used those phrases in her examples, I realized how ridiculous they sounded. Who talks like that to a typical person? It's not like when you're having a conversation with your husband you interject in the middle of his sentence and say "good talking!" crazy. She gave us examples of phrases and conversations that will encourage speaking and interaction without us actually sitting there coaxing Nate to try to talk. We have a lot to change in our house.
At the end of her talk, we cornered her (which I'm sure she absolutely LOVES)! Matt wanted to know a little about discipline since that's what we have the most trouble with when it comes to Nathan. She gave us some amazing ideas, and I'm super excited to implement them into our regular routine. We often have trouble finding Nate's currency--an object that we can take away from him as punishment--and since there is no real currency for him, we have a hard time getting him to listen. She asked what he liked to do with us, and Matt mentioned tickling/wrestling. Dr. Audet said "BINGO! There's your currency!" Wow, how had we not thought of that?! Instead of taking something away from Nate in order to get him to behave, we are now going to be providing incentives (seriously, I was a teacher, how did I not remember that!?!?!?). We are going to make a chart, and if he listens X # of times, he will earn different privileges (extra Ipad time, walks, extra tickle time, etc). I'm so hopeful that this is going to work for us!
We enjoyed Dr. Audet's speech, help, and overall friendliness so much that we are considering making an appointment with her for a consultation. We brought more information and ideas home from the 90 minutes session, than we have in the past 4-5 doctor appointments that we have had for Nate. I guess there is hope for us!!!
Monday, March 19, 2012
Matt and I escaped our "real life" for a few days to go on a trip to Vegas.
About 2 weeks before Vegas, I spent some time taking a sports-themed wallpaper border off Nate's wall. He decided that it would be really funny to tear pieces of the border off, and it was beyond repair. Instead of having his room look like crap, we just decided to take the border down and repaint. After some brainstorming, Matt and I decided that a "Map Room" would be awesome for Nate. He is in love with maps, and has had the names and locations of all 50 states memorized since he was about 4! We scoured the internet for some awesome pictures, bought huge frames for his giant new maps, found the perfect paint colors, and even hung a chair rail. His room was awesome. We put a ton of effort into making it just right for him: comfy, not too stimulating, and Nate-friendly.
Last night (Sunday) was our first night home, and bedtime wasn't too bad! I thought, "boy I hope we turned a corner!" Nate wasn't screaming, he wasn't kicking his door, pulling things out of his dresser/closet, or anything like that. Nate was just playing quietly in his room. Matt and I went to bed about 9:15, and Nate was still up and playing quietly. We didn't go in there to say goodnight because we didn't want to disturb him.
This is what we woke up to....
Nathan had completely peeled off at least 3 layers of paint from his wall (I've never even seen that green or pink color on his walls!). His awesome map room has been destroyed, and right now I have no desire to fix it. I know it needs to be done so that he doesn't make more of a mess out of it tonight, but I just don't feel like it right now. I can't even begin to explain how disappointed I am. When I opened his door and saw it, I wasn't even mad. My heart completely sank and I just wanted to sit on the floor and cry. I took so much time making his room perfect, and he doesn't even care. He pointed to the missing paint on his wall, and giggled. I don't think I've ever felt disappointed in Nate's actions until today. He's done some silly and crappy things in his life, but nothing has made me feel so unappreciated and taken for granted. I told him how sad he made me, but he just smiled and pointed again to the missing paint.
Monday, March 5, 2012
I've been struggling with something for quite a while, and it seems like the older Nate gets, the worse my problem/issue gets because I realize how much Nate is missing out on. I am ridiculously jealous of most of you parents out there. I'm not typically a jealous person, except when it comes to my son and how he compares to other children his age. My fits of envy occur all the time; while in the store, at Nate's school, and especially when I'm spending a lot of time around "typical" children.
My most recent bout of jealousy was not too long ago. I was listening in on a conversation amongst friends about signing kids up for spring sports. They were talking about how excited they were to have their kid(s) be a part of an extracurricular activity and make new friends from their new team. All I could do was listen. I couldn't participate, share their same excitement, or be happy...all I could do was sit there and be jealous and sad for Nate. He doesn't know what he's missing, but I sure do.
We've been receiving fliers from school on a weekly basis about sign-ups for t-ball, soccer, camps, and fun summer activities. I don't even look at them anymore, they just go right into my recycle bin. I know that because of Nate's attention problems, social issues, and inability to communicate with most people, these camps and sports teams aren't in our near future. There are camps and teams for children with special needs, but most are super expensive, and many of them are also geared more towards children with physical handicaps, not kids who can't speak.
I've parents say how they wish their children "would just stop talking for once!" or would "stop asking why so much", or "stop asking so many questions". I can't even tell you how much this bothers me. I would give anything, absolutely anything to have a real conversation with Nathan, with real words, and a real meaning. I'd much rather have my child talk to much, than not be able to talk at all. And again, the jealousy and anger sets in. I'd take my own voice away and give it to him to ease his frustration.
I hate to admit it, but at times my feelings of jealousy prevent me from wanting to be around typical children who are the same age or close to the same age as Nathan. I know that spending time with other kids is great for Nate, but sometimes I just can't deal with it. I've been working hard to get over my feelings of jealousy, and at times they are stronger and more fierce than I could ever think possible. Please know that if I just don't feel like getting together, it's not you, it's me.