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.

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.

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:

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.

Occupational Therapy: Day 2

After 2 weeks break, enjoyed his OT, and Steve got to go with us this time. Jake really likes Ms. Cindy, and I personally think that she's a genius. I really enjoy talking to her. I told her what the Dr. Causo said, and how I was greatly confused and surprised by it. We spoke about it at length, and she explained that I should get with Dr. Michaels (her husband) about it and we could discuss what we needed to do, and when. She assured me that none of it was an emergency and expressed concern that we had had a LOT of things happen at one time and it was OK to just sit back and take it all in.

Then I felt like we had a breakthrough. I expressed my feeling that, even though Dr. Causo felt that we should rule out other causes of Jake's issues, my GUT FEELING is that they will find nothing, and that Jake is just an autistic kid who doesn't show ALL of the autistic symptoms. Cindy basically said "you may well be right.. Jake doesn't show all the symptoms because you have always worked with him, somehow noticed his delays and deficiencies and made up for it, with sign language, etc." She then tried to make our heads blow up real big telling us what good parents we are, and that the babywearing, the attachment parenting, and the socialization has made all of the difference with Jake. So maybe his symptoms have been "masked" by good parenting? I hope so. Friday's visit was probably the most positive visit with anybody that we have had so far. Not just because we were rewarded with praise for our parenting choices, but because my gut feelings finally got some validation. Thanks miss Cindy.

Due to a friend's recommendation, I have become interested in RDI as a plan for helping Jake, although I had not had time yet to explore it very much. I asked Cindy if she had heard of it, and it just so happens that she's working to be certified in this method! She says that Jake is a prime example of the type of child who would be helped by this method (for example, a child with very limited body regulation skills) and wants to include him in her certification process. She would be using video of them interact to speak to the experts who are doing her certification, and they would help her fine tune both her skills, and the way that she interacts with Jake. I think that it is a great opportunity for him.

Again, it was a very positive session and for once I am feeling excited and hopeful.

Developmental Specialist: What?!

This morning was Jake's appointment at Dr. Causo's office of Neurodevelopmental and Behavioral Pediatrics. Dr Causo was very gentle and nice, and I liked him a lot. That didn't mean it wasn't a nightmare of a visit.

First of all, Jake decided that he wasn't going to cooperate at all. Dr. Causo did all of his own preliminary stuff, height, weight, blood pressure etc, and Jake decided then and there that he didn't want to be there. Initially laying on the floor, and finally breaking down into hysterics by the time the Dr. tried to test his ear drums with a device that was nothing more than gentle ear plugs on a probe. The rest of the examination was done in an exam room and was the most thorough that Jake has ever experienced. It included reflex tests, a blacklight to check for skin abnormal ties, lots of what looked like muscle resistance and joint tests (we didn't talm much over the screaming). The entire time Jake kicked, screamed, cried and scratched. Manny was with me as well, and wanted me to hold him and nurse and was upset by his brother's antics, so the little guy hung onto my leg and tried to climb me while looking into my face in utter confusion and cried in just the most terrible way. This ordeal lasted for an hour or so.

Jake finally came around when we were finished with the physical exam. He played a bit with Dr. Causo with blocks, and was overjoyed when the Dr. got out a set of rubber stamps and put green smiley face and compass stamps all over Jake's arms. Both kids were eventually satisfied with crackers and drinks while we went through the question and answer session, and I filled out the CHAT questionnaire. Then it was time for the Dr. to tell me what he thought.

This is where he says "blah blah blah, high functioning autistic... blah blah blah...here's your diagnosis... blah blah blah enjoy your occupational therapy and speech therapy, he'll be fine."

Oh no wait, thats not what he said at all.

What he did say: "I think that Jake has something going on neurologically that is creating autistic like symptoms. All of the tests will show that he is autistic, but I am not comfortable with just that diagnosis. I don't think that he is autistic, he does not act like an autistic child. He does have some of the symptoms, but he just doesn't fit the autistic or PDD-NOS profile."

Huh?

He went on to say that because Jake has always had and still has very low muscle tone, we're possibly looking at a brain injury/brain damage sort of situation, or possibly a metabolic or genetic disorder. Of course he could be wrong, and Jake is just a kid who, by some coincidence has congenital hypotonia AND autistic like symptoms, but again, he doesn't feel comfortable just letting it go at that.

Not what I was expecting at all. Somewhere in the middle of him telling me this I had the sudden need to move my bowels. After a quick trip to the restroom, we resumed.

I have on my desk a note from Dr. Causo's prescription pad. The first thing it says is "static encepholopathy." Static encephalopathy is "a disease of the brain which doesn't get any better or any worse." From what I can figure out from a quick google search, this is often used to describe children with Cerebral Palsy, FAS or brain injuries. Then the prescription asks for "Brain MRI with and without contrast, EEG, EKG, [something] lab, amino acid and organic acid, chromosome analysis, FISH and autistic panel and fragile X" It also calls for physical therapy and orthotics for his feet. The Dr. feels that his feet turn and need to be corrected.

After that I'm not sure what he said except that he will send this report to Dr. Micheals and that he will be interested to see what the test results show from the school system (I took him a list).

So, from what I can gather, and I may or may not be wrong (because my mind is reeling a bit) is that the worst that can happen is Jake could have a neurological or genetic problem that is degenerative. Then besides that there's the possibility of a metabolic issue where dietary changes are in order, the possibility that Jake has mild Cerebral Palsy or another brain injury that happened in the womb or at birth and nothing will really be changed as far as therapies and treatments go. Or, maybe he's just a kid with autistic tendencies and having the shit scared out of me (literally) right now was just "precautionary". The doctor just felt that we should rule everything out.

Not what I expected at all.