Thrilled with G, but not with myself...

On Friday, I put G behind his little shopping cart and waited for him to begin fussing. We are supposed to do this every day, and we do, despite his objections. For reasons known only to him, he considers walk-behind toys to be the worst form of punishment there is. We only wish we had discovered this sooner--like before we spent about $75 on different varieties of them. As it is, he can tantrum behind his choice of a shopping cart, a pseudo post office or a small horse.

Well, he became so incensed that he pushed me away, stepped back from the cart and NONCHALANTLY WALKED OVER TO THE COUCH!!!!!! I was so excited I almost fell over! He has taken steps now and then during PT, but it's always been our choice. We let him go in the middle of the room and cheerfully implore him to move his feet. This time, he made the decision to walk and the pride in that was written all over his face. Of course I called everyone I know.

I had a busy day in the house on Friday and made many trips up and down the stairs. Because of this, I neglected to close the safety gates every single time I came up and went down. The one at the bottom of the stairs is kind of temperamental, so I admit that I have been pretty blase about it. Not any more.

A few minutes after one of my trips upstairs and back, I was in another room cleaning when I heard M yelling. I hurried in and it turned out that M was saying, "G is climbing the stairs!" I looked up and indeed, G was about 7 stairs up, grinning over his shoulder at me. I was simultaneously thrilled at this achivement and grateful that my carelessness hadn't resulted in any injury. What could have been makes my stomach churn.

I have decided to focus on the achievement and what this means for his development rather than the near-disaster aspect. But you can be darn sure that I'll be a lot more careful about those gates in the future.

Another boring therapy post

Our PT, the lovely Ms. Ego, just sent me an email stating that she had contacted Dr. Dashing and that he wanted us to come see him again. She said that he was concerned about some of the things she mentioned on the phone and wanted to see G's supposed weakness for himself. Supposedly, he wants to see us as soon as possible, preferably this week.

Since I have not heard from Dr. Dashing, I am assuming that she is overstating the urgency here. Last week, I emailed him myself with the therapist's concerns and her desire to contact him. I wanted him to be prepared for the heavily accented hurricane that is Ms. Ego. In his reply, he didn't seem thrilled at the prospect of getting a call from her and he definitely wanted to see G again before recommending that we see a physiatrist.

Ever the diplomat, his response to the whole situation was something like "Sure, if she wants me to check him out and you are okay with it, come on in!" He even offered to have someone from the physiatrists group in his building come in a take a look at G during his appointment. So, I guess we will be going there as soon as we can get in. I think I know what he will say--that G has made huge improvements and is likely to catch up to his peers. But a small part of me fears that he will agree with the therapist, that G is not only low-tone, but weak as well. I don't think another visit will lead to an answer though--all doctors have said that a muscle biopsy is the next thing to do, and no one wants to do it at this age. Least of all me.

In a strange reversal of stance, Ms. Ego has decided that not only does she approve of Dr. Dashing as a reputable neurologist, but that he sounds "attractive and charming" even on the phone. I almost told her that Dr. Dashing is both attractive and charming in person as well, but I got a little afraid that she might ask to come to the appointment with us. Once a week is all I can take.

I feel lucky today.

An online friend, whom I have only gotten to meet once in real life, announced yesterday through a post that her daughter was diagnosed with Rett Syndrome. It was on a forum for developmental delays, so it's a pretty normal occurance for someone to post that their child received a diagnosis. But the raw pain in my friend's words was arresting. She talked about getting the call, seeing who it was on the caller ID and not wanting to pick up the phone but forcing herself to anyway. She wrote how the kindly doctor asked her to sit down and then delivered the news she least wanted to hear.

By the time I finished reading her post, I was weeping. Not only because Rett is not a great diagnosis to get, but that because I have seen this child. I know how beautiful she is, how gentle and kind her mother is. My friend has worried aloud for her baby for months but neither she nor anyone else suspected this. She is also pregnant and has worries for her unborn baby as well. It is too much for one family to bear. I want to help, but I can honestly say that I don't really know how. I have offered her a shoulder to cry on and a hand to hold, but I may never have any real idea what she is going though.

I feel like I have spent the past year of G's life trying to give whatever is going on with him a name. Calling it benign hypotonia has just not been enough for me. Maybe I need to stop and count both my lucky stars and my blessings. I certainly have enough of both.

Potty-mouthed in two languages! He's gifted!

VC: What does the cow say?

G: Mooooo!

VC: What does the dog say?

G: Woof, woof!

VC: What does the duck say?

G: Quack, quack...

VC: What does the sheep say?

G: (at top volume) Shiiiiiit!

I kid you not.

Baby on strike

G's early intervention PT comes in about a half-hour to work with him. I must admit that I am pretty nervous about this today. She is relentlessly positive, but there is no way she will not notice that he can't or won't do some things he was doing easily before. And what she might say scares me.

I have not been able to get him to walk with one hand held, walk behind a toy or take even one independent step since about 10 days ago. He shakes and cries and reaches desperately for my hand. It's heartbreaking, but it could also be pathetic by design. He knows his mama doesn't like to see him cry and won't push the walking issue too much.

He had a little viral thing this weekend, which may be causing some of the issues, but it seems kinda extreme for a fever to cause non-walking. Perhaps he was just telling us he felt like crap and didn't want to do anything for a while. Today he seems to be much, much better and I hope his antagonism toward walking has gone away.

Time to clean the house and wait for her to come. Always, always the waiting game...

Love your books, hate you

Through a lot of wrangling and phone calls, I was able to get G. into the hallowed office of Dr. Autism, Foremost Expert on Everything. They had a cancellation and what usually took years ended up taking mere weeks. I was so excited it was incredible. This guy was the big gun in the diagnosis field, if there was something there, he saw it. I had read his books over and over, I quoted him at the dinner table and put many of his theories into practice in our home. Dr. Autism was also supposed to help me fix what was a growing rift between my husband and I about whether or not G needed any extra help at all. I made a deal with F that if Dr. A didn't see anything, my obsession with asd could come to an end.

The morning of the appt. brought miserable weather and a big ice storm was forecast for the afternoon. F was out of town, so everything was up to me. I trekked out to the doctor's office in rush hour traffic, fighting the mounting snow and poor directions. I was suprised by the waiting area--there was nothing in it that indicated it was anything other than a rarely used porch. We spent a few minutes in there and were ushered into the office.

The office was remarkable in that it was a perfectly preserved den from the 70's, complete with paneling and ugly furniture. After waiting with the kids going wild for what seemed like an eternity, the guru finally appeared through what appeared to be a door hidden in the paneling. I was confused at first, but my amazement at the good doctor's outfit overcame my confusion.

Wonder upon wonders, the exalted MD was wearing a MAROON VELOUR TRACK SUIT. My first thought was, where do you even buy something like that? My second thought was, how could you possibly think that was appropriate for the office? My father is a doctor, he was actually in the same class as Dr. Autism. Did their school somehow fail in instruction on sartorial matters? I sincerely doubt that. Even though he occasionally cuts wood in mesh tank tops (yikes!), I can assure you that wearing a velour suit, maroon or otherwise, has never crossed my father's mind. Especially not for public consumption--I think he would rather die than see patients in anything other than a white coat over a suit.

He began asking me questions and I answered kind of haphazardly, being still in a velour-induced daze. He then asked me to start playing with my son. I played for approximately 30 seconds when he informed me that it was all wrong. I tried again and was even more wrong the second time. I started to panic--it was an important test and I was failing. G felt my panic and became alternately clingly and withdrawn. Things got measurably worse after that. M decided to "assist" me and got in the way of every single thing I was trying to do. Then Dr. Autism began critiquing me on how I dealt with M. I was informed I was sorely lacking in that area as well.

After the "play" was over, he launched into a speech about how G's problems were all about me, that when my affect was up, G was normal. When it was down, he lapsed into developmental issues. I became terribly upset, my hero was telling me in effect that I was a terrible mother. He wanted G to see a therapist thousands of miles away, despite the fact that he saw nothing serious going on with him. He asked me to increase G's PT to 3x week for a year. When I balked at the cost, he said the following: "You wouldn't base your decision on money if he needed a liver transplant, would you?" Then he said that if my dad was in his class, he certainly had money enough by now to pay for his grandson's PT. In my mind, I told him off and left the office. In real life I sat there meekly, taking the chastisement of the expert. I practically slunk to the car and drove home in the beginning ice, feeling like a terrible mother all the way.

Against my better judgement, we went back to Dr. Autism a second time. I seriously wondered if I had minterpreted him and wanted F. to be there as well. It didn't go much better. Apparently when you visit him for the first appointment of the day, he just doesn't have time to comb his hair. F was very disappointed by the lack of velour tracksuit, but he was impressed by the unprofessionalism of the doctor's sweatshirt and old lounge pants. The evaluation cost nearly 1500 dollars and Dr. Autism ate couscous during it. He also took several phone calls and left once to use the bathroom.

He kept urging the two of us to tell G to crawl. He had me throw balls across the room and bounce up and down excitedly saying, "Get the ball, G!" F explained that G got a lot of PT for his gross motor delay and that yelling at him to come get the ball might be good in theory, but useless in practice since he was motorically unable to crawl or even get on all fours. Apparently, this statement of fact signaled a bad parental attitude and we received a long lecture on how our actions influence G. We also tried to explain that playing with your child in front of a critic is not a normal thing to do, and therefore our play was not really normal. It all fell on deaf ears.

He said that G appeared to be fine, even gifted in the language area. He also pretty much refused to answer whether or not he saw anything else going on. I understand the reluctance to make a call on babies, but I expected more from someone of his expertise and experience. I put up with critiques and abuse from him and I got nothing in return. But we were too afraid of getting another lecture to pursue an official yes or no, so we left.

As we left, I asked F whether or not Dr. Autism blamed me for G's issues. I waited for him to say that it was all in my head, that I was making too much out of things. "Yeah," he said. "He pretty much is saying that you are not doing well with G and that it has led to issues." He immediately added that he didn't believe it and that we were never going back again.

And we have not been back. But the waiting list for him still grows and grows. I feel sorry for the parents who have bought the books and bought into the dream, only to meet the man behind it. I have no doubt that his theories work and that he is sincere. But you think that a little bedside manner would have come out over the years. After all, he is working with parents whose dreams have died a little, who may never see their child do certain things we all take for granted.

This experience has really made me think about my father and the different choices he has made. My father may not have books or be internationally known, but he listens to people and cares about them. He dresses in a manner that shows his patients that is a professional who can be trusted, who is as meticulous with their health as he is with his ties. He sees people every day who have health problems of their own doing, but he doesn't level blame, only gives advice and encouragement. I am sorry he is not more well-known. He and others like him should be.

Breaking up is hard to do

I have a rocky relationship with G.'s physical therapist, Ms. Ego. I am beginning to suspect that parting ways might be the smartest thing for all of us, but I am still not sure. As with most breakups, there are very mixed feelings on my part. He has made some wonderful progress since he began seeing her, but I am not sure I can attribute it all to her. He has begun to crawl and take a few independent steps, but he also pretty much hates the sight of her. I want to believe that's because she makes him work, but he is all smiles for his other therapists--who make him work just as hard.

There are also the philosophical differences, which seem to be widening each day. She has expressed misgivings about doctors in general, a notion that doesn't sit well with me, a doctor's daughter. She has indicated that she believes G's neuro is not going a good job with him. I emphatically disagree with this and so does my husband. In fact, our neuro (whom I will call Dr. Dashing) is highly regarded by everybody. I know, I have asked doctor after doctor which neuro they would recommend and Dr. Dashing comes up every time.

Things came to a head a few weeks ago when she sent me an email telling me that perhaps we should take a break during the month of July. Her reasons were as follows: G did not wear his shoes often enough, we were more inclined to listen to EI and that I was confused about the advice we had gotten from various doctors. Virtually every word in the email came as a complete surprise to me. Because we are dealing with an English barrier along with everything else, I called her, sure that she didn't mean exactly what she had written.

Well, she did mean it all and she was not shy about reiterating it all over the phone. In fact, she added more and more things about me that bothered her. I was overly negative, G. cried during therapy because of me, he would be walking now if only I made him wear his orthotics more often, I am just not as encouraging as I could be--the litany went on and on. It was eerily reminiscent of my meetings with Dr. Autism, Foremost Expert on Everything.

I got pretty hot under the collar during all of this, and I think she was pretty surprised that I defended myself as strenuously as I did. Perhaps she thought that a mother who once cried during a PT session wasn't made of much. Actually, I surprised myself since I had been such a shrinking violet with Dr. Autism. In the end, I told her exactly where she had me wrong and thought that G shouldn't be punished for a misunderstanding between his mama and his PT. We agreed to move forward and leave his schedule as it is now.

By the time I got off the phone, I was livid and frankly sorry that I had not said some things that were on the tip of my tongue. We are paying you over $100/hr for you to insult us and make us feel like we are lucky for you to keep us on as clients? We work very hard on home therapy and it was pretty insulting to be told that we could not follow directions. Not only that, but I cannot and will not stroke your ego every time you feel that Early Intervention is getting the upper hand. Your insecurities are not my problem, and they certainly are not my son's. In the interest of civility, however, these comments all remained unsaid.

My sweet F volunteered to do PT with G the next week. I thought I could be civil or perhaps even friendly, but the anger rising in me as we opened the door assured me that leaving was the safer option. At the end of the session, she gave me the usual gloom and doom forecast, to which I responded with the most impartial "Um...Hmmm..." I could manage. I was ready to just forget about it and move on when she delivered her parting shot. The next patient had come in, a baby with torticollis and the corresponding helmet. She picks him up and as she takes him into the therapy room she calls over her shoulder to me, "This little guy is making so much progress...and he NEVER cries during therapy."

This week's rumble was over whether or not G needs to see a physical medicine specialist and who should determine that. She told me a story of a little guy (just like G!) who was having trouble crawling and pulling up. The parents listened to her (unlike us) and took him to a physical medicine guy. Turns out he has a connective tissue disease and cannot do much PT without doing harm to his joints. I made my face as impassive as possible and said, "Did he have Ehlers-Danlos? We have tested for that with the neuro." She expressed surprise that I knew the name of the disease but said her main point was to say that without a physiatrist, you will not get the right diagnosis. I reminded her that G has had a pretty full genetic workup. Most of the big guns are off the table. She once again gave her opinion of Dr. Dashing. Another impasse...

Don't get me wrong here. I want to do what's best for G and I don't have any particular problem with him seeing another kind of specialist. I do have a problem with her telling me that seeing a developmental pediatrician was "stupid" and that I am hurting G by not getting him to see a certain doctor with whom she seems to be in cahoots.

Boy, this post has certainly turned into a bitch session. I just wish I knew what to do in this situation. I think that Ms. Ego is a great therapist, but she may not be the right one for our family. It is just so hard to know which way to turn.

The Next Big Thing

M: Can we go to Sheep World?

VC: You mean Sea World?

M: No, Sheep World. I want to see the sheep they have there...and the water park.

Honesty--the best policy.

M: I want a peanut butter and jelly sandwich.

VC: Are you going to eat it?

M: No, actually I'm not because I really want raisins.

Cut to scene of mother banging her head on the table...

No, it's pronounced EYE-gor...

M. has become quite interested lately about how girls are different from boys. To put it bluntly, she wonders why she doesn't have that fascinating appendage G. has. We have been preparing for this for some time. Our attitude has been that we are both children of the 70's, that we read Where Did I Come From? with our parents and did not die of shame. [Okay, time for the truth. My mother would have NEVER been able to buy or borrow a book with cartoonish illustrations of fat naked people (!!), no matter how many other mothers were doing it. And read it to us? Are you kidding? She let our Montessori school do it for her.] Anyway, we both look upon this as a phase that will pass.

We have tried to remain natural about the topic, we have consulted books, and we have gamely answered her questions in public restrooms. The books tell you not to get embarrassed or stern and to do your best not to laugh. We have had trouble with the straight face portion of this advice--especially when she composed a song on the subject that featured the words "spiky" and "prickly."

M. also insists on using the French pronunciation of the word. Because of years of Catholic schooling, I have trouble saying the word no matter what the language. Notice how I have refrained thus far from typing it, just in case someone in my family might read this. I have never even considered how it should be pronounced in French because I truly fail to see when I would be talking about this subject with any of F.'s relatives.

Our relaxed, natural plan backfired recently on the escalator at Nordstrom. She was chattering happily away about her brother's anatomy when I pointed out that perhaps this was not the best time to talk about penises. She instantly corrected me in a voice just a few decibels shy of a DC-10: "Mama, it's pronounced PEN-is, not PEEN-is!"

I stand corrected.

It's right next to the honeydude...

At the museum:

F.: Look at that! Do you see the little camel?

M: Where? What is it?

F.: Right there, do you see it?

M.: I see the camelope, I see it!