Wednesday, January 21, 2009


Well.. I haven't blogged in a while. Maybe I've had less to rant about this month(unless you count the fact that a nasty virus has run through our family yet a third time in 6 weeks, but I'm kind of getting used to cleaning up puke).

Jake has yet again begun to make giant leaps with his language and social skills as well as his physical abilities. Lacy comes and spends three mornings per week at our house, when everyone is well, and brings her little guy Maddox who is only one month older than Jake. Lacy has tons of energy and plays with the boys all morning. After lunch they all watch a movie while Manny naps. I've noticed Jake modeling Maddox's behavior a bit for example: sitting and looking at a book while the movie plays instead of laying on his back with his feet on something. Stimming has really reduced in frequency and intensity since we started doing floortime, almost to the point that, when he does it, I know that he is just tired and it isn't so much of an issue anymore.

I have decided that Disney's Toy Story and the sequal must be the best movies in the world to show a 3 year old (almost four, how did that happen?) autistic child. Its a pretty good movie if you're an adult too. I think that it adds an element of magic to the idea of toys, and inside the movie the children are constantly modeling pretend play. Since getting Jake his Buzz doll, he constantly pretends... and not just mimicing the movie, but deciding that Buzz is hungry and such. Yesterday he got a Woody doll as well, and Buzz and Woody have some interesting conversations. I have systematically removed almost all of the noise-making electronic toys from the house (yeah, I know, Buzz and Woody say three phrases each, but thats different). When Jake wants to withdraw he will grab something that he can do by himself, like a talking book toy. Its funny when I think about how parents of typical children (and me too, in the past) look for toys that will keep their children occupied by themselves... and how I look for the opposite. Instead of video games and leap frog stuff we have a ball pit and a swing. Lately I remind Jake's friends and family: "My kids need PEOPLE to play with not THINGS to play with."

No matter what is helping Jake the most these days; School, Lacy, OT, it is really nice to see such vast improvement. Yesterday we had the best OT session, in my opinion, that we've had so far. Although Jake is still going from one thing to another fairly quickly, Cindy was able to have a very long interaction with him and his brother sitting at the table and pretending to eat foods that were pictured on cards. When given a card with popcorn Jake says "Popcorn machine my home," telling Cindy that he has an air popper at home that we use almost every night. He is improving his ability to talk about and sequence events. He still does it in an odd way, and every sentence lilts up like a question. For instance, after OT yesterday he says "Fun go see Cindy? Fun swing? Fun table picnic? Clean up?? ALL DONE!" In this way I can actually gain some insight as to what goes on during his school day. Granted, the teachers send me a little note every day, but it can be scary to a parent of a verbally delayed child to send them off every day and get absolutely no feedback from the horses mouth. When Jake gets off the bus, he will say "Fun school day? Fun puzzles? Play computer.. Fun.. snack time?" It really makes my heart soar. He also has a funny attitude lately, and at lunch time yesterday at a pizza restaurant he pulled on my shoulder to get my attention, and said, very matter of factly "We need some Pizza!"

Physically Jake is getting stronger and gaining more muscle tone and motor control. He still falls a lot but he falls less. He's able to do tasks such as taking off his socks and going up and down stairs more efficiently. The other day we went to an inflateable playground place because a group of moms who I like were going there. I was very apprehensive since we had had a bad experience with one of those places about 18 months ago that had caused Jake to be terrified of inflateables in any situation (such as a craft fair or something). Much to my delight he loved even the biggest slides. I honestly didn't think that he could PHYSICALLY climb the big ones, but well, here's the video to prove it. Watching it myself, it doesn't even look like my child doing that.

At the bottom he says "I'm swimmin!" He was pretending to be sliding into a pool. I think once that Jake realized how pretending worked, and that anything can be anything that he wants, it has really brought a lot of joy into his life.

Meanwhile, Manny is still growing and is beginning to walk and take a few tentative steps, although he still seems well behind other children his age on most things. But I am hopeful because otherwise things seem to be developing at least in the right sequence for him. Yesterday after OT we went to the creative discovery museum and spent most of the rest of the day. Outings are getting a big easier and harder at the same time. Easier because Jake's social skills are developing to a point that he is a bit easier to "control" and he tantrums much less, usually only during the normal tantruming times, like leaving a fun activity but I rarely have to carry him out lately, he just screams while he walks. Harder because I have two very mobile boys with completely opposite interests. I literally need eyes in the back of my head (and an extra me sometimes). These days I am exhausted, but hopeful.

****Pics: top: The scar on Jake's chin is from a nasty dog scratch. Sweet Bree stepped on his face while he was laying down on the floor. It was an accident. Last pic: The look on Manny's face pretty much sums up his attitude these days

Monday, January 5, 2009

Why am I still Angry?

Something has been bothering me since the family gathering with my parents and my father's side of the family. I keep trying to chalk it up to my own ability to be ultra-sensitive sometimes, but I'm having trouble getting it out of my mind. Usually this side of the family, which includes Mamaw and Papaw, is a more low-key celebration, and this year was no exception. As usual everyone was sweet and gracious when gift opening began, and it was a fun day, especially for the kids. Jake was in great spirits and showed no signs of freaking out even though he was the center of attention, which can sometimes send him to another room to be alone. So what bothered me so much?

One of my relatives asked me about Jake's reading because Jake was spontaneously spelling words and reading things here and there. I began to explain about hyperlexia, and about how Jake has a preoccupation with letters and numbers. This immediatly led to a "Well see there, he's smart! there's nothing wrong." comment from another relative. I'm used to that and went on to explain that sometimes people with learning disabilities can read at advanced levels, however they still have issues actually understanding what they read, etc. I was very very suprised to notice that everyone was actually listening to me. But then....

"Well that sounds like me! *har har har* I can't understand a thing I read either.. "
"I must have a learning disability too * har har har * cause I read and read and I'm still stupid."
"I reckon I've got that problem too... ha ha... "
and so on...

Suddenly everyone was laughing and giggling. I wanted to jump up and scream. I said something snide like "Thats really making light of something that is very serious to us." I really should know better, however, as much as I realize that it makes my family extremely uncomfortable that they have a "retarded" grandson/cousin/nephew, I just feel like I should just keep trying to educate, since I've totally given up on seeking these people as a source of support. I try not to let this incident bother me, but to be literally laughed out of the room when discussing my son's disability, something that is a constant source of heartbreaking challenges, self-doubt, and sometimes amazing miracles is just too much for me to keep inside. I'm over-sensitive, I'm aware of it, but somehow this particular holiday exchange made me glad that we were celebrating Solstice instead of Christmas with people who are accepting and compassionate.

I love talking about Jake's issues, sometimes pointing out particular small things to people that I am around that they may have not noticed otherwise. Some things that he does are so fascinating and amazing. There are so many misconceptions about autism spectrum disorders and I find that many people are just as fascinated and even (at least seem to) enjoy finding out more. The word "autism" is all over the media, yet very very few people know what it means and many are happy to discuss it more and learn what all the fuss is about.

I worry a lot that I am boring people or making them uncomfortable with my constant prattle. We were recently visited by my husband's cousin and her husband. They are young newlyweds and I found myself talking about Jake and autism quite a bit with them. During one conversation with the young husband I was mentioning the difficulties I had convincing Jake's Dad, my family, friends, and even Jake's doctor that I was sure that something was wrong. He said something like, "You have convinced me to take at least one early childhood development class when I go back to school before we have children so that I can recognize issues if they come up."

Wow, really? So my yapping, no matter how uncomfortable it makes my family, really is totally worth it. Educating one one-day dad makes it all worthwhile. Happy Honeymooning, you two.

Sunday, January 4, 2009

Late Holiday Update

I haven't blogged in a while, and I would love for this blog post to be a positive one. Unfortunately, I'm not sure that it will be. All in all, we were able to weather the holidays pretty well.

This blog is about Jake, however it is also about my entire family, so other details always creep in. We've been very very sick and very very busy, so when giving the run-down of what Jake, and the rest of us, have been experiencing these past few weeks since the Holidays, it may not be the most uplifting reading, but I will try.

Because we were traveling to Macon to stay with friends on Christmas, we decided to have "Santa" on Christmas Eve morning. The boys got a toy each and handmade pants from Mom and ID bracelets along with sweet treats and chocolate. Jake was absolutely stunned to receive a Buzz Lightyear doll. Jake loves TV and books and develops great fondness for his favorite characters. However, the first feature length movie that he's ever taken an interest in has been Toy Story. Steve convinced me to get him a Buzz Lightyear action figure for Christmas but I was skeptical about his possible reaction. When opening the package he saw a picture of Buzz on the back of the box (Jake loves to handle and hold video packages or pictures of his favorite characters.. but I guess he's never really met any of them in real life, as he was about to do), and exclaimed "Buzz!" and looked quite happy to know that he was about to open a Buzz related gift. His stunned to silence reaction when he saw the toy is best seen in this video:

After we opened presents we packed luggage, kids, dogs and a turkey that Steve smoked earler that morning into the car and headed for Macon to stay with Kevin and Ariane, our good friends. We had pretty much invited ourselves to their home for Christmas and we were seeking solace from the rigors of a high-pressure family gathering. It was wonderful to be there in their peaceful home and they were amazing enough to share their space and family traditions with us. Even though we'd invited ourselves down for Christmas eve night, they asked us to extend our stay to Christmas night and we were planning on an evening of revelry when disaster struck.

Just as dinner was starting Manny started vomiting. He was sick a few times within that hour and a quick decision was made to take the kiddies back home despite the three hour drive. It was a good decision.

Manny was sick for 6 days and lost a lot of weight. I got sick on Sunday and was sick for a week (I lost a little weight, but its not so much of an issue with me). Jake got sick soon and was throwing up violently until New years. It just wasn't a great holiday for us. I mean.. it was.. but .. well.....

Now, after a week to recover, I am looking forward to OT with Cindy tomorrow and the arrival of OUR NEW NANNY! Yay! I posted an ad on craigslist and after talking to a few prospects decided to hire a sweet lady named Lacy. She is a darling and has already been here one day. After a rocky start she played happily with the boys and wore them out. She's going to come 3 mornings per week and I will groom dogs two days and sew in what is left of the time so that I can hopefully afford to pay her a little better than the small amount that I was able to offer up-front. I am VERY happy about this development.

More about the holidays and specific events later, but this is my best attempt at an update.