Monday, September 29, 2008

Off to School!

(alternate title: "The longest 3.5 hours of my life"

So today was the day. At 7:30 the bus arrived to pick up Jake. It was a similar experience to the first time he rode the bus last week. Except this time he didn't go around the block and come back. This time the bus kept going. I was shaking in my shoes when they drove away.

I'm not an overprotective mother. I am an attached mother, however and after the last experience, anyone would be nervouse. You see, last year I attempted to put Jake in a preschool program at a local church. Many days he would cry so hard that he would shut down, literally going to sleep (or unconcious) and would be laying on the floor when I had to go pick him up. He usually couldn't be roused and would sleep on the way home as well. He cried hysterically any time you mentioned school.

So I spent the longest 3.5 hours of my life waiting for the bus, and was nearly glued to the window at 11 AM. The bus doors opened and a smiling Jake appeared. He's very tired, and is resting in his room, but I am confident that today was a success. Here's what his teachers wrote in his book.

Jake was SO excited when he got off the bus today.

(then from the speech therapist)
Jake did so well today. He used a lot of words to express himself. He told me he needed help drawing and labeled his drawings. Very good first day. Amber.

(then from his teacher again)
Jake has done really well. He loved painting. He ate some crackers and drank some orange juice at snack. You can also send a snack if you want. Jake got very excited when we went to the playground. He did seem pretty tired after a busy morning and was happy to see and ride the bus again. Kathy.

Oh wow, I am SO relieved. The absolute KEY to making sure that school would work out was a good first day. You just can't believe how super proud I am of my amazing smart little guy.

Over his spaghetti lunch I asked Jake "Did you have fun at school?" He said "Go school, ride bus." and smiled

Watch how excited he was to get on the bus.

Saturday, September 27, 2008

Jake can read.

We were quite aware of the fact that Jake can read, or at least learn and memorize words. We had been writing three letter words on his doodle pad or paper and having him read them for a couple of months now. I guess I didn't realize how big his reading vocabulary is. Most of it I'm sure he is learning from the Signing time videos because they always put the written word on the screen when teaching the sign. I realized that he could read one day when I was watching the signing review at the end of the DVD (because he was getting ahead of me on sign language) and he read the word "help" when it flashed up on a blank screen. I thought "oh, he's memorized this." when I realized that he'd never seen the signing review before. He had read the word.

What is probably most surprising is that the reading, like most of Jake's "splinter skills" as they called them on his special education report, is that they are self-taught. His drawing, number and letter recognition, counting and other skills he has learned from TV or educational electronic toys, and yes, sometimes us. His drawing however seems to be almost completely his.

Rarely are his therapists and evaluators interested in these extraordinary skills. They are more concerned with helping him with what he can not do. This is understandable. I think I may work with him more on reading words and get a head-start on that particular skill. Why not, right? Its possible that Cindy may disagree, and I will surely ask her, but hey, if he can already read well when he is five, we can always use the extra time not spent learning to read focusing on social skills.. maybe?

Tonight I made some flash-cards and showed them to him. I wrote some words that I was sure he was familiar with from baby signing time. He surprised me on a couple of them I didn't know he knew "please" and "sorry". The video is of the second time he had seen these particular flash-cards, and he was pretty distracted. He was more interested in holding and turning the cards himself, like he is doing at the end of the video.

Speech Therapy Day 8

Just as Cindy saw on Thursday, Elizabeth got to see a calm and centered Jake today. "A completely different child." She said. We just never know what state Jake is going to be in and these phases last for weeks or months sometimes. And truly he is like a different child. After 7 sessions of completely wildness Jake sat with Elizabeth and played with the shape sorter and a puzzle. She got to hear him speak more than she'd ever heard.

I was sad to tell her that Jake will be going to school and that we'll possibly be dropping the speech therapy at TIPS in favor of the speech therapy through the school system. It will save us about four tanks of gas worth of out-of-pocket expense each month. I assured Elizabeth that it has nothing to do with her, its more of a convenience and financial based decision. Of course all of that is contingent on Jake liking school. Even if he doesn't like it, I can continue to do speech therapy with Amber.

Jake is using phrases like "What's the baby doing?" and "I want..." more and more often. I can get him to say "Please" and "Thank you." much better as well. Not that it has to do with speech, but we have been working very very hard with him to keep him from touching strangers and their watches, and he is at a point where he will walk up to people and say "Hi!" and then lean over and inspect their watch without touching. Not quite what I would call 100% socially acceptable, but its a great first step. Besides, its cute as hell. Maybe I'll teach him to say "Heeeeey, nice watch!"

Friday, September 26, 2008

Pediatrician Visit

Thankfully, Steve was able to keep Manny while I took Jake to Dr. Michaels' office. It was probably a good thing too, since Manny napped the whole time I was gone (so Steve got a little work done) and we waited over an hour to get in to see the doctor. Dr. M. was extremely apologetic about our wait time, and Jake was extremely patient considering.

Dr. M couldn't find the report that Dr. Causo had sent, so while we waited on a copy to be faxed over, I told Dr. Michaels everything that Dr. Causo had said. I also had a copy of the prescription for all of the tests that Dr. C. had ordered. Dr. M. seemed to have a similar reaction that I had had last month after I left Dr. C's office. He said that he was really hoping for a simple diagnosis, and he really didn't think that Jake needed all of the tests that Dr. C listed. Well, he said that, in many more words.... I don't want to put words in his mouth, but this is what I gathered.

After we discussed a game-plan, Dr. M suggested that we get the metabolic, chromasomal and genetic testing done first. This will involve me taking Jake to a local diagnostic center for a blood pull. Then they'll send the samples off for testing and well wait a month (everything takes a month or 6 weeks these days).

I am confused as to whether or not I should follow up with Dr. Causo. Since we aren't doing ALL of the tests, do I go back to him? What are we trying to get again? A diagnosis, or "label"? Jake is getting services through the school and through Cindy, and insurance is paying all that they are going to pay either way. I DO want to get the genetic testing done to see what it tells us, but as far as getting a "diagnosis" based on what someone sees, I don't know how important that is. Dr. Michaels says that if we decide to move further, we can go to a Developmental Psychologist in Atlanta if we feel the need.

One day next week I will take Jake to Dalton Diagnostics and have blood drawn (cringe). I am glad that these tests will only require a blood draw. It will still probably be somewhat traumatic for Jake, but it will be over in just a few minutes. At least we're moving forward.

Thursday, September 25, 2008

Occupational Therapy Day 5

Today was yet another interesting day at OT. Cindy couldn't believe how quiet and attentive Jake was. She wanted to know how long we spent at the park today before OT (about 45 minutes) and was in awe at how calm Jake was. I tried to express to her that this is just how he is. He is at maximum speed plus 100 MPH for a month, then settles down into the state that he was in today for a few weeks. Thats just life with Jake. You NEVER know what you are going to get.

I talked to Cindy quite a bit today. I told her about school. I told her about the bus. I gave her the report from the special ed department. I told her about the riding lessons. She seems to think that they were all wonderful ideas. I also told her that if school works out that we might drop the speech therapy with Elizabeth. For one thing.. it will save us a pantsload of money every month, and if he is getting therapy at the school, why should we screw up our saturdays when we could be doing other family activities? Cindy was in agreement that we should come up with the program that fit our lifestyle.

I enjoyed my talk with Cindy today. She has a lot of insight on every aspect of Jake's treatment that I bring up. I feel like she's a great friend and a great resource for our family, and I look forward to talking with her every week. If I could pick ONE person as an ally for our family in this journey, I think it would be her.

I am worried about my trip to Dr. Michaels office tomorrow. I will have Manny and Jake with me, as I really have no option for care at such a short notice (my husband being the only person who can or is willing to care for Manny, he just has had no opportunity to develop a relationship with any other caregivers...). Dr. Michaels office has recently lost staff, so the wait time in his office and lobby has sometimes been over an hour and a half for us. I am going at 11:30 which is naptime for Manny and lunchtime-quiet time for Jake. I just hope that I don't end up trying to talk out this very important consultation with Dr. Michaels over two restless boys. Wish me luck!

Wednesday, September 24, 2008

A Bus Ride, Riding lessons, and a bit of Frustration for Mommy

Today at 1:30 a strange sight could be seen on our driveway camera. Jake and I have often watched the cars and the schoolbusses go by on our camera (installed because we have no windows on that side of the house), but this time there was a bus. A STOPPED bus. A stopped SCHOOL BUS! I told Jake to look and he ran to the TV breathlessly saying "Schoolbus! Schoolbus!" I already had him dressed and in shoes and had Manny on my back in the carrier, so I said "Lets go see it!" I thought he might trip over himself getting to the door. We jogged down the driveway and Jake was simply delighted to see the bus door open and nice ladies inside waving at him. They were equally delighted to see Jake so excited that he had to stop every few feet to flap and squeal and jump up and down. He climbed right on the bus and hopped into a seat and clapped his hands and exclaimed "Yaaaaaaay!"

After I spoke to the bus driver and her aide while Jake tried out different seats, I asked if they would take him for a ride. They were happy to, and I decided to stay and let him go by himself. I didn't want him to get the idea that Mommy rode the bus with him. They drove around the block and he returned just as happy as he had been when he left. We discussed his schedule (they will pick him up at 7:30AM on Monday morning and drop him off around 11:00 AM) and I led a reluctant Jake off of the bus. He waved to the bus and drivers all the way up the driveway, as it turned the corner, and until it was completely out of sight. I think that the bus is a definite go. I wish I had pictures, but I do not. Maybe there'll be more of his first day of school.

After reading Temple Grandin's book and seeing her speak of how wonderfully children with autism do when exposed to horses, I decided that Jake would probably benifit from being around them. I love horses and I love to ride, and after watching Jake sit so calmly during a pony ride, I started looking around. I contacted Storybook Farm and Equine Rescue which is just a couple of minutes from our home. Crystal, the owner of the farm, agreed to meet with us this afternoon. Jake loved the farm where there are pigs, ponies, chickens, cats, donkeys and of course, lots of horses. Crystal and I worked out a trade. I will groom her three farm dogs monthly, and she will give Jake a half-hour riding lesson every Friday at 3 PM. He will be riding Redwho we met today. Red is a beautiful horse.

Jake is aquiring quite the weekly schedule. School on Monday and Thursday, OT on Thursdays after school, Riding lessons on Friday and Speech on Saturday. Not to mention the activities that I'll manage to come up with on off days. It may seem like a lot for a 3 year old, but it sure beats watching him lay in the floor and stim. It also takes some of the pressure off of me to figure out activities every single day with only me. I think it will help a lot.

And as for the frustration....

Today Dr. Causo's office(the developmental pediatrician) called to remind me of an apointment that Jake has tomorrow. I had no idea. I was quite confused. I told the receptionist that we hadn't had any of the testing done and that Dr. Michaels had told me it would be at least 4 weeks before he got the report from Dr. Causo and that I should call him by the end of the month. "You haven't done anything?" she asked. Ugh. She checked and told me that the report had been mailed to Dr. Michaels on September 6th. Double Ugh! I cancelled tomorrow's appointment and rescheduled for their next closest appointment which is October 22nd. I called Dr. Michael's office and made an appointment for this Friday at 11:30 for a consultation. I am a bit frustrated that things have been delayed for yet another month. I have a lot of questions. One of which is about Jake's toenails, which have always been flat and thin, have begun to look worse and even concave. I worry that this is a sign of something related to nutrition or metabolism... or somethine else weird. Anyway, I can ask him on Friday. I am ready to get some of these things off of my mind so that we can move forward.

So it was a great day if you are a three year old.. school buses, horses. And a long and tiresome day for Mommy. At least we're getting somewhere!

Tuesday, September 23, 2008

Special Education Department Results Meeting

The meeting went pretty well. Steve and both boys went with us. I have on my desk a giant report that is mostly a summary of things I have told them or that they tested themselves. I will hit the high points.

(a number with a % means the 'th percentile and a number that says, for example 1-8 means that jake is functioning on the level of a child who is 1 year and 8 months)

"Jake's performance on the BDI-2 yielded a Cognitive standard score...which falls at the 2nd percentile when compared to same age peers."

Attention and memory: 1% 1-8
Reasoning and Academic skills: 9% 2-0
Perception and concepts: 1% 2-2

"...first percentile... The results from the [tests] indicate that Jake has significant language delays."

Receptive: <1% 1-11
Expressive: 1% 2-1

Motor Skills:
"...42nd Percentile" Jake's gross and fine motor skills were OK, and his perceptual motor skills are exceptional, rating in the 5 year old range and >99 percentile.

Adaptive Behavior:
"The results indicate that Jake's adaptive behavior or daily living skills are adequate at this time."

"Parent ratings on the [test] yielded a social-emotional score.... equivalent of 2 years 1 month. The ratings on the [test] yielded a socialization domain standard... which falls in the 13th percentile. These results indicate that Jake's social development is somewhat below average."

Jake was seen to have some autistic traits, and the test showed a "most likely autistic" rating, however the school system doesn't officially diagnose, so I guess its just another indicator.

From the summary:
"Results of the present evaluation suggest that Jake is currently functioning below expectancy in the areas of social skills and communication. Cognitive scores are inconsistent... Jake appears to have splinter skills and some gaps in cognitive development at this time. Adaptive skills appear to be within age appropriate limits. Overall, motor skills appear age appropriate, while perceptual motor skills appear to be exceptional.... At this time Jake demonstrates significant delays in the area of communication and social skills. It appears that jake will need additional instruction prior to kindergarten in order to learn effective ways to communicate with others, learn various age appropriate concepts, develop more appropriate social skills, and increase interaction with peers."

So, there it is. I don't really feel any different after this evaluation. It all seems to be things we already knew, just written down in a harder-to-understand and more official sounding format. The good news is that Jake does qualify for services through the school system special education department.

What does that mean? Well, for one thing, Jake will begin school on Monday! Kathy H, the preschool teacher, one of the people we met with, and also a childhood friend of mine, has room in her class. He will be attending on Mondays and Thursdays from 8AM until 10:30. I am hopeful about this because when we pulled up to the pioneer headstart building, Jake began flapping wildly, giggling and saying "School! School!" I guess I called it "school" when we went there for the assessment. He loves the rooms and played on the playground with Daddy and Manny while I finished up in the meeting and was reluctant to leave.

I realize that Jake will be in a class with other delayed and disabled children, and while I feel like he could benefit from being in an integrated program I realize that A) there is no such option available right now and B) I would rather him be in a class with all delayed children with a teacher who is trained to deal with kids like him than for him to be in an all-typical preschool program with a teacher with no experience with special needs children. Ms. Kathy also says that they have tons of flexibility when it comes to catering to each individual child's needs, and says that they will expose Jake to the typically developing children in the headstart class that is in the same building, both on the playground and in group activities. Jake will be given speech therapy there at the school by Amber (my cousin, who could not join us today) and any other services that he needs. I think this is a great stepping off point. I am still terrified that he will not like it and will break down like he did during his short stint in preschool before.

Even more exciting? Jake will be riding the bus! There are two bus drivers and one small bus (yes, the proverbial "short bus".. I couldn't help myself). Kathy said that the children who ride the bus usually LOVE it, and considering Jake's obsession with schoolbusses, I am hopeful. They will even come by one day this week to let Jake try out the bus and maybe go for a short ride around the block. I am nervous and excited for him.

Now I must stop stress-eating like I have been all day, and try not to think too much about the first day of school.

Monday, September 22, 2008

Drawing Again

As it sometimes goes with Jake, all I have to do is voice a concern and he proves me wrong. This morning Jake started drawing again, just as well or better than he ever has. He drew "Joe and Blue" from Blues Clues, as well as a Ladybug. His detail on people (when he draws them) never ceases to amaze me. The green markings on Joe's legs are "socks."

On the other hand, he also sprayed my entire grooming shop with coat finishing spray, dumped out a whole box of powder and rolled himself and his little brother in it, tried to eat berries from ornamental grass, and made "dog food soup" for the dog using her water bowl and some dog food. With every leap comes mischief, although I can handle mischief as long as he's moving forward in other areas. His speech is great today, and he's been talking quite a bit.

Tomorrow we all go meet with the Special Education department to get the results of their assessment. I have already been warned that sometimes this is a hard meeting to go to because they compare your child to "standardized" guidelines. I have no doubt that Jake won't meet many of the requirements, so hopefully I have prepared myself mentally for it.

Speech Therapy Day 7

Speech Therapy didn't go so well on Saturday. Steve unexpectedly met me at TIPS to take Manny off of my hands. That was a relief and made it easier for me, but Jake was upset that he wasn't staying. He cried for a lot of the time. Sometimes I think that nothing is happening with speech therapy with Elizabeth. Not that I think that it is her fault, and maybe she is still just trying to figure him out much like Cindy is doing. He just simply doesn't do any of the activities that she sets up for him. I am quite frustrated with it. But of course we'll keep going with it and see what happens.

Thursday, September 18, 2008

Occupational Therapy Day 4

Cindy is still trying to get a feel for Jake, however, after reading the sensory profile that I filled out, she had a much different approach to working with him. She decided to let him lead. Meanwhile, I was videotaping the first few minutes of their interactions so that she can get started on that. She was much more successful getting him to interact with her by letting him decide what activity he was finally going to settle down and do. It was probably also helpful that I took him shopping and wore him completely out before we got there.

I asked her about his drawing, and she said that we should probably watch the issue as a "lost skill," although she took into account what I told her, which was that he often lost interest or seemed to lose the ability to draw any time he was gaining other skills.

Jake had a wonderful surprise during the last 15 minutes of his visit. Bridgett, one of his very favorite people in the world, showed up for her own OT appointment early (totally planned by Heather, Cindy, and I). Cindy was interested in seeing how Jake interacted with other children, and Heather was understanding enough to allow her daughter (a couple of months older, but much smaller than Jake and disabled from cerebral palsy..but don't tell HER that) to withstand the onslaught of a very excited Jake. I guess the "quote of the day" came from Cindy. Its something that I have said a million times when trying to explain Jake's social issues to others, but coming from someone with so much knowledge, and who seems to always have a clinical way of speaking, it just tugged at my heart. She said: "What is so sad about this is, he wants so badly to play with her, to interact with her. Its so obvious that he likes her so much." I don't show emotions when people are watching if I can help it, but I can't think about her saying that sitting here alone without tears coming to my eyes. I wanted to scream "YES! exactly! thats what I keep trying to tell everyone." I know that this is why we don't get invited to so many playgroups. The more Jake likes someone.. the more he hurts them physically. Never in anger or as an act of cruelty, but just because he seems to have no idea what to do with his body when his mind decides "hey! you're cool!"

It seems like we have a long way to go with him when it comes to this particular behavior. More so than speech, cognition and everything else combined. It is the biggest issue that I have when it comes to dealing with my family as well, because no matter how much I beg them, I can't get them to understand that Jake is too big to touch others inappropriately. He is allowed to jump on them, grab them, pinch them, twist their arms around to see their watches. Mamaw encourages him to grab at her throat and pinch while she makes a "frog" sound. A habit that caused him to painfully choke a young girl at a playgroup once while he happily yelled "frog! frog!" Even strangers, when he grabs their arm to look at their watch or when he pulls their clothing will say "Oh, he's OK!"

I am very very lucky to have understanding friends like Heather, Clyf, Bridgett and Cindy. Sometimes I don't know what I'd do without them.

Artist's Block, or Evening-out?

Yesterday we went to the playground with a group of Attached Parents Group moms. I hadn't seen many of them for several months, and some of them looked right and Jake and didn't recognize him. I guess part of it might be the super punky hairdo, but I think its just because he's grown up so much in just a little while. I was so very very proud of him. He was nice to other children. He took turns on the slide. He refrained from touching people and their watches so much (something we've really been working on). And he even climbed to the top of the structure and yelled "Hi You!" to me, almost as if to say "Hey mom! Look at me!" I didn't have to follow him around like a shadow to make sure he didn't grab or pinch anyone. His self-control is just amazing compared to where it was just a few months ago.

On the other hand, he seems to have lost his ability to draw. Now, there have been times here and there where he seems to have lost interest in drawing and then come back to it, but somehow this is different. When I ask him to draw something in particular, he will try to draw it, get frustrated, then insist that I draw it for him. This morning I asked for a house, and he drew a smushed mushroom looking house, then scribbled at it and insisted that I draw one for him. He seemed quite upset. My question about this is: Is this considered a "lost skill," the fear of every parent of an autistic child, signaling some sort of regresion, or is it an "evening out of skills?" Is he using the part of his brain that used to draw really well to work on other things, like speech and social skills? Or is it just a momentary lapse like I've seen before, and he will go back to it? I will have to ask Cindy at OT today what she thinks.

Meanwhile, Jake spends his time being nice to his brother, while I spend too much time on the phone talking to the school psychologist, the OT, the office managers about insurance, etc. It seems that Jake is quite the interesting case and it is taking them quite some time to figure out what to do with him when it comes to therapies. Thats OK though, we have time, and although it is frustrating, I remain hopeful.

Sunday, September 14, 2008

Thank you again, Professor Grandin.

I have been reading again. I dont' think I've been able to have time to finish a book since Jake was born, but lately I have motivation. I keep reading anything and everything I can find by Temple Grandin. I heard about her and listened to her interviews on NPR long before I we figured out that Jake was autistic, simply because I felt like she and I had a bit in common, both because I have had to work at being social and enduring idle chit-chat and sports talk, and because of the way that I work with animals by trying to learn their language, instead of trying to make them adapt to mine. I've always, in my 15 plus years working with animals, been irritated when my clients anthropromorphize dogs. It still irritates me, though I tolerate it because I know that it is socially acceptable.

Sometimes I think that that the fact that I've worked with animals my whole life may be helping me journey along as mother to Jake. I know that he doesn't think and feel like other people do, and, according to Prof. Grandin, he may think a lot more like an animal than most people. This is something that I've figured out to some extent on my own, although I was afraid to admit it. I was afraid to admit that using animal conditioning techniques when trying to teach Jake worked better sometimes than trying to teach him like a child with more advanced "human" social abilities. So.. I guess I have been very afraid to admit that sometimes I feel like I'm "training" Jake istead of "teaching" him. I get the feeling that his OT, Miss Cindy, may think that my attempt to be a crackpot behavioralist may have been to Jake's advantage. Yet, I'm on a quest to learn much much more.

Tonight when reading this interview on NPRs website, I had a realization. Well, actually it was more of a validation of something that I had already figured out to some extent. This quote from Prof. Grandin made so much sense to me:

"But the one subtle social cue I did pick up was tone of voice. And the interesting thing about the form of autism where kids mainly echo back what they hear is they often think the tone is the language rather than the words. They have to be taught that the words have meaning. "

When Jake wants to scold someone he says "Maxxx!" in the tone of voice used by a cartoon character from "Max and Ruby." Ruby is the big sister and often scolds Max, who is constantly getting into mischeif. She begins most of her scolding with a high pitched whiney "MAAAXX." When Jake is excited about something he will often exclaim "A clue, a clue!" I have decoded some of this echolalia by using the context of the situation, but having it expressed in so few words by Prof. Grandin has really made an impact on me. Jake is learning that the WORDS have meaning.. but I just have to keep in mind that he is going down a different path to get to the final destination of understanding.

Its hard for me to grasp that Jake has a disability that is not much different than being blind or deaf from birth. Its something that can be overcome, but probably the hardest thing for a child who is blind from birth to learn is that THEY are blind, everyone else can see, they're the different one, not the other way around. Prof. Grandin didn't realize that she thought differently than other people until well into adulthood. I can't imagine what it felt like.

One of my favorite people to read about since I was a child is Helen Keller. I never could get enough of reading her autobiography and I've probably watched "The Miracle Worker" in every possible media imaginable, including live theater. It always fascinated me how her soul could be trapped in a cage for so long, only to blossom and grow throughout her life. I find myself more interested these days in Anne Sullivan, Helen's teacher, because I need to be that person for Jake.

Saturday, September 13, 2008

Speech Therapy Day 6

Speech with Elizabeth went pretty much as usual. Jake gets wild with Elizabeth, and I think it is because he likes her. Today she tried to get him to "finish" one activity before moving to another, with little success. This week we are to work on "finishing" one activity by saying "all done" or cleaning up. We will also work on sequencing by asking Jake to do two tasks, which he already does pretty well, and moving on to three. Elizabeth said that Jake is doing better with referencing and looks to me for approval duing the activities. I have noticed that he seems to "check in" with me more often instead of seeming to be driven by his own engine with no regard to what I'm doing or thinking.

Occupational Therapy Day 3

Steve had the day off Thursday and Manny was napping, so Jake and I visited Cindy's place just the two of us. Jake was his usual crazy self, but Cindy managed to get him calmed down a bit. She explained to me that she may seem like she's floundering around trying different things, because thats what she's doing. I was pleased with the visit, although, as usual, certain things that she points out scare me to death. When she put Jake on her "scooterboard" (like a carpeted skateboard) on his belly, rolls him down a ramp towards a big foam cube.. he is expected to put his hands out and push on the foam. She says that its a reflexive reaction, he's supposed to protect his face. Instead he barely stays on the board and needs her to hold him all the way down, and he crashes face first into the pad, laughing his head off. He loves it, and wants to do it again, but not enough to ask or attempt to talk.. instead he gets frustrated and runs willy-nilly about the room.

There's other things about the visit that I'd like to express, however I just finished reading "Emergence" by Temple Grandin and my brain is just too full. What amazing insight into the autistic brain this book has given. Not enough, but some. I am beginning "Animals in Translation" right now. Some of the things that Cindy does are starting to make sense.

I'll write more later... right now my brain is tired. The inlaws are invading my space this weekend.

Sunday, September 7, 2008

Speech Therapy Day 5

Jake was still in super-excited mode when we went to Speech Therapy. There was just no way to slow him down long enough for him to focus on anything, but somehow Elizabeth managed to get him still for a few minutes. Jake found a sandbox full of dry beans and rice and she stripped him down to his diaper and put him inside. Although there were beans and rice all over the entire room by the time it was over, this activity actually managed to get Jake to focus on one activity for a few mintes. This gave Elizabeth and I time to talk. She helps me fine-tune what I'm doing at home, which is more than I can ask for.

It is sort of confusing that Jake will stay focused on one thing for super long periods (stimming) but can't be made to concentrate for more than a few seconds when in a teaching/learning situation.

One of the advantages that having Jake at full-throttle speed is that he talks a LOT. When he's in his slower, whinier more withdrawn mode he talks very little. I never know how long each stage will last or when he's going to switch, but hopefully therapy is going to help him even out a bit.

Today I swear Jake said "I want to go to the penguin store." (penguin store= the aquarium). I couldn't be sure that he actually uttered the entire sentence because he was turned away from me, and I couldn't get him to repeat it. However, a few minutes later:
Jake: "Ride car"
Me: "Where do you want to go in the car Jake?"
Jake: "Ride car, go to city."
Me: "Where do you want to go in the city?"
Jake: "Penguin store."

That was quite a conversation. I was thrilled with it. I think he says "Penguin store" because "Aquarium" comes out "cream eat" and he doesn't like being misunderstood. He is putting a lot more sentences together like later today he said, "Ride Car, go mexican restaurant, eat tacos."

Tomorrow morning we head to the "Penguin Store." I'm taking our babysitter with us for fun.

Friday, September 5, 2008

Anybody have a map?...

...because I'm not sure how I got here.

How did I get to where I am now? A parent of a "special needs" kid? Why have I been chosen to have this responsibility? Sometimes I wonder how my mental stability, my sobriety, my marriage, and my ability to raise both of my boys and treat them as fairly as possible, will ever withstand this enormous pressure.

Tonight we went to the city. Jake was happier and more exited than I've ever seen a human being be about anything. I worry about my husband sometimes, because he enjoys his own level of social anxiety, and, although he doesn't say it, I think he wishes for a more "normal" experience when we all go out together. The level at which Jake enjoyed our outing was a challenge in itself. He just couldn't slow down or stop screaming and exclaiming and laughing loudly , and with these highs comes some serious lows when he has to be asked to sit in his chair or not lay on the floor. We went to a fancy restaurant, and given the circumstances.. (1 year old and 3 year old would be a challenge for any family) we had a beautiful time. Jake had popcorn shrimp and french fries, Steve had trout almondine, and I had truffled risotto. Manny had whatever he wanted from our plates.

I noticed a middle aged dating couple at a table near us who were being a bit snarky about our messy and unconventional dinner arrangement (Jake in my lap part of the time, or Jake on the floor under the table part of the time, or Manny banging silverware.. or whatever). At one point I simply used all of my strength to hold Jake as tight as I could in my lap as he threw his weight from side to side and pinched my hands. I just had to do it for a few seconds and then he settled and sat. The couple were giving each other "the look" and were being quite rude. I caught only small hints of their conversation concerning us until Jake happened to take a break from his loud and constant verbal stimming without warning. I heard the lady say "..and NOW she's giving the BABY some of her risotto!" I had to laugh. Talk about being under a microscope. Thats just why you can't worry about what others think. I guess if you have nothing better to do in a restaurant than to examine someone's parenting choices right down to her decision to give a one year old the fancy restaurant version of mac 'n cheese, then I'm actually glad we showed up to stimulate what would have probably been pretty boring dinner conversation.

We had a wonderful time. Here's a video:

Tuesday, September 2, 2008

Speech Therapy Day 4

Not much to say about Jake's Speech therapy session this Saturday. It was my birthday, and we decided that we'd leave the therapy session (which is only 30 minutes at begins at 9 AM and head to Chattanooga and the Aquarium. We foolishly TOLD Jake that we were going there, and it pretty much rendered him completely wacky for the entire session. We ended up talking a lot to Elizabeth, and she helped me figure out some of the things I was doing to work with Jake at home.

Other than that we didn't get much done, and after 30 minutes of discussion we went and had a wonderful day in the big city.