Sunday, December 21, 2008

Merry Christmas George

Today was our family gathering for Christmas at my mothers house for breakfast. Jake was in a particularly good mood, very social and VERY loud. Everything he said had to be screamed, but at least he didn't hide in the next room like he can do sometimes with groups of people. Jake has finally figured out the concept of "opening presents" and was excited to do so.

My aunt Carol definitely gets the prize for best presents this year, even if we had to do a little trading out. For Jake there was a Fishing Puzzle with Fishing Pole just like one that Cindy uses at OT. Also Curious George at the Aquarium book which Jake instantly asked Steve to read, then me. Jake loves George AND the Aquarium. Jake also got a plush clown fish puppet, however he wasn't really interested in that. Manny got some wonderful pajamas (he really needed some) and a Curious George stuffed toy. Hmm... can you guess what Jake's favorite present was? You guessed it: the George monkey meant for Manny (don't worry, Aunt Carol, the fish puppet made a great trade and makes Manny laugh and giggle).

I guess it might not be such a big deal about George the monkey, however, unlike typical children, Jake has never formed an attachment to many "appropriate" toys. His attachments are less socially acceptable and are to things like stopsigns and spatulas. Children practice appropriate social behaviors with toys like dolls and stuffed animals and that is why pretend play is so important. Jake has rarely if ever hugged a doll, made a toy dog run across the room going "woof woof" and actually only recently has played with cars or trains other than to spin the wheels or flip open moving parts.

George monkey had to ride home in Jake's lap on the way home, and was missed when we left him in the car. He was presented to me to give a kiss. Daddy was asked to make a portriat of Jake, George and me. Then it was neccessary to dress George in pajamas (two different sets, as the first one wasn't quite right), and then George was put to bed and covered with a blanket.

We never know when these little miracles might happen, or where they come from. I just hope that the Buzz Lightyear doll that we got for Jake doesn't thwart George monkey out of the limelight just like he did Woody in "A Toy Story" (Jake's current favorite film, and a possible catalyst to his recent interest in playing with toys in a more normal way).

Jake and Manny also received two different leapfrog games from my Mom. The one for Jake is still a little old for him (as is the V-smile I got for him a year ago), but both children are loving the reading turtle that Mom got for Manny. I'll have plenty of video games put away for when either child asks for a system.

It was a nice Christmas celebration and it even fell on the Solstice. Thanks family.

Three days after solstice we will be leaving for South Georgia to stay with friends who have similar ideals and holiday practices to our own. I think it may just be one of the best winter holidays ever.

Friday, December 12, 2008

A breakthrough or two

I've expressed my frustration with Jake's pinching and such quite a bit here, but let me describe it a little more, just to give a good picture. I call it "pinching" but it was way beyond that. If I got a hug from Jake he would dig his fingers hard into my ribs. He would often run up and grab my arm and dig his fingers into me and sniff or lick my arm. If he was on the floor he might rake his fingers across the top of my foot. While riding in the shopping cart, if he becomes impatient, he might scratch the tops of my hands until they bled. While holding hands he would screw his forefinger and thumb around so that he could pinch the littlest bit of skin on my palm (if Dad and I were walking side by side holding his hands, he would only do it to my hand, not Dads). If he became frustrated with blocks he would run over and dig all of his nails into my upper arm and rake them downward.. even if I was at the computer and not involved in his game. As I've said before, he was doing this maybe 20-30 times in a 10 minute period (thats every 20 or 30 seconds or so) if we were playing together or working closely on a task. If he was playing alone and I was working, he would "only" do it every 4 or 5 minutes. He seemed to be "sneaky" about it, and sometimes I would yell out and Steve.. standing right there, would have no idea what had just happened, as Jake would slip his hands behind me or under my legs if I were sitting, or ask for a "hug" then sneak attack with his digging fingernails.

It was maddening. I had tried to do things suggested by his therapist, but had pretty much resorted to slapping his hands, yelling "no" and "stop it." The more I tried to make him stop, the worse it would become. I was avoiding playing with him. When he would come towards me for a hug I would turn my back. If he ran at me while I was standing, I would put my knee out so that he ran into it with his chest. He would still "get me" but my jeans would get the worst of it. I was at a total loss as to what to do. I tried to ask Dr. Dunbar about it, but never really got that far.

So, yesterday, I was playing on Jake's bed with both boys. I was using some of the play tactics that we learned from Dr. Dunbar and having just an amazing time. Following Jake in his various vocalizations. Trying to "take part" in everything he said or did, even if it seemed meaningless or if it were stimming behavior. I didn't try to do an activity at all, we were just sitting on the bunkbed and I was jabbering like an idiot and being loud and overly expressive over every single word he said. He was laughing and giving me constant feedback and eye contact, yet was still going after me with his hands, mouth, feet and I was THIS close to getting frustrating and ending this wonderful interaction we were having before I lost my temper. Suddenly he grabbed my arm with both pinchy digging fingers, shoved his nose hard into my arm and sniffed loudly.

I did it back.. I grabbed his arm, dug my fingers in with matched ferocity and sniffed his arm.

He was very perplexed. Seconds later he dug his fingernails into the backs of my hands and scratched. I did it back. He actually paused, gave me good eye contact and a very unusual look. For the next half hour, every time he dug his fingers into the back of my knee, my ribcage, my crotch, I did the exact same thing back, trying to match the location and intensisty the best that I could. Some of it he didn't like. Sometimes he modeled me and said "STop it! stop pinching me." and sometimes he giggled if it were a really tickly spot, but he didn't seem to like it at all, and his reaction was very unusual.

Near the end of the playtime we were laying down next to each other pretending "sleep." I was tired of over-acting and my ability to smile constantly was coming to an end. Jake was doing his sweet, yet painful activity of digging his pinchy fingers into my mouth and cheeks and trying to get me to smile. I was doing it back with equally pinchy and pokey fingers. He was laughing, but somewhat uncomfortably. Something inside of that amazing brain of his was turning in a new way.

He's stopped doing it... almost completely. He touches me appropriatly. He still seems to have the need to touch me, but it is more pats and gently rubbing, not awful pinching. I cried real tears of joy later in the evening.

What made him stop? I have no idea. Did he think that I wasn't feeling anything when he did it? Did he think that I was yelling and acting nuts for no reason? Did he not even notice or know that he was doing it? I have no idea, but I just pray that it keeps working.

So.. in the last two days I am learning how to play with my child for the first time, and really enjoying because I am no longer under physical attack. Praise the universe.

Tuesday, December 9, 2008

Our visit with Dr. Deborah Dunbar, Ph.D.

This morning the house was awake at 5:15 AM, as usual. Manny woke up for a spell, which awakened Jake... Manny would have gone back to sleep only his brother was up and ready to rock. Steve was kind enough to stay up with the kids while I went back to bed. Steve usually falls asleep earlier than I do, while I stay up late working on my business and otherwise winding down. So, in this way we've managed to develop a lifestyle that keeps us from going completely insane with kids who get up long before we would like them to. It also pretty much keeps us from having any quality one on one (cough*phsycial) time together, unless we try really hard (which we do when we can).

We left for Atlanta at 10 AM, stopped for a quick fast food lunch and arrived at Dr. Dunbar's office just on time.

Dr. Dunbar greeted us personally in the waiting room. The first thing she told us was to just play with Jake in our normal way while she watched. Oh my, I feel the most inadequate when I try to play with Jake, I honestly just don't know how. Manny was making too much noise for her to hear Jake's voice, and, as usual with any appointment that is "for Jake" Manny gets the crap end of the stick because he can just be in the way. Steve took him out for a little while and Dr. Dunbar and I continued the assessment. Later on, I was able to put Manny in the SSC on my back and he hung out happily while Steve and I could both glean the benifits of the visit.

Dr. Dunbar gave us so much to think about. She showed us many ways to play with Jake that will eventually overcome his lack of engagement. She told us not to worry about his speech, as she feels that his speech is just fine and that his ability to label, his reading, writing, numbers, and other skills will always be there, and that we can always be proud of those. However we need focus on teaching him to engage others. He is only learning scripted language. The "real" language will come once he learns to engage a variety of people in a variety of situations.

There are 100 questions that I'd like to ask any expert with as much experience as Dr Dunbar for instance: will he ever potty train?, why is he pinching me?, what will he be like when he's older? Will he be able to live on his own without me? However, after we'd spent a lot of time playing and talking, Dr. Dunbar said "I have about 15-20 minutes, please tell me what you wish to accomplish with this visit and we will concentrate on that." We were made to realize that our very expensive therapy time was coming to an end. Lets cut to the chase.

I, as usual, choked back tears and asked "Please tell us how to play with our kid." I explained that I have been told that I must "engage" Jake for many many hours out of the day yet, I have no idea how to do that. Dr. Dunbar had already shown us examples of different approaches, and we were blown away. We were truly given some powerful tools today.

She went on to express (just like Cindy and other people who have worked with Jake have done) that we need to recruit other family members, friends, neighborhood teenagers, anybody on earth that can come and engage Jake besides us. She mentioned examples of funny and fun grandparents, cousins, uncles or other family members that might bring him special joy. I saw true dismay on Steve's face during this part of her assessment. Dr. Dunbar points out that, even though we do as much as we can, Jake must be exposed to different people in different situations on a ONE-ON-ONE basis. Something has to be done so that Jake has a variety of people in his everyday life. Not just his family here at home, and his teachers at school.

This evening I began putting out advertisements on craigslist and other forums for a part-time Nanny or babysitter. It would be worth the financial strain to get Jake the socialization that he needs. We are also hoping for Steve's parents to sell their house out-of-state and move here very soon. We have discussed our needs with Steve's mother and she seems to be on board to help us. Hopefully they can beat the market and sell their home. Jake seemed to benifit so much from her last visit. He truly has a connection with her even though she lives so far away.

All in all it was a wonderful day. After the visit with Dr. Dunbar we went to the Dekalb airport and watched the small planes take off and played on the playground. Everybody (including me) slept in the car while Steve drove back to Dalton. We went to the local sushi restaurant where both kids ate like crazy. Jake even uses his (kid adjusted) chopsticks like a pro and pigged out on seaweed salad, tempura shrimp and sweet potatoes. Both came home worn out and went to sleep.

We have a lot to think about. Steve seems to be absolutely thrilled with the knowledge that he gained today. I am equally thrilled to feel "on the same page" as my husband. I look forward to Jake's OT with Cindy as well as another visit with Dr. Dunbar in a few months.

P.S concerning Manny: Dr. Dunbar, though trying to "ignore" Manny because the session was "for Jake" kept using Manny's appropriate behavior as an example. That makes us feel very good about Manny's development. Between that and Manny's recent check-up with Dr. Michaels...I have decided not to worry so much about Manny's development as I have been (yeah right, easier blogged than done).