This evening I was in great spirits. It was drizling outside and the kids wanted to splash in the puddles in the driveway, okay.. they had a blast and no tantrums when it was time to come inside.
I dont know what type of snack S had at day care, boy was he hungry! He ate a big banana and a full bottle of milk.
Then I settled down when my fil and mil callled from California where they are visiting their daughter-my sil who just had a baby girl.(btw-she has great eye contact-thank god)
My inlaws have been my biggest support so far, so in tune with the diagnosis, our limitations etc.
And my fil reads a lot and has been reading stuff from the internet.
He read this book over the weekend and wanted to share the information with me.
This is apparently one of those books where the parents have recovered their boy by solely their hardwork and research.
My fil was so disappointed in me" you are a doctor and you have not taken care of the diet of your son. these parents have worked so hard and changed the diet and recovered their son. it has been eight months and why have you not done this bare minimum yet... you are always telling us that S is not doing that well , but how do you expect all these therapiest to work if he continuus to get glutein and casein?"
I tried to tell them about time limitatios,limitations at day care which is run by one mother taking care of other NT kids, two jobs, B12 shots that we are doing etc, no use.
"Just change the diet first, I am sure S is going to be fine. "
Amen.
Monday, April 20, 2009
update on therapy
S has been getting ABA for six months now. Looking back, it seems like he has not made much progress although his therapists seem to think that he has.I am not so concerned about spoken language etc because it is too much to expect but I was expecting the eye contact and the joint attention to get a little better but it has not.That was my six month goal for S.. eye contact and joint attention.So for the past month, we have been doing DIR/floortime with him and it adds up to about 20 min daily .. that's all.On top of that we started the B 12 shot.I dont know if it is in my head or it is real but both my husband and my are seeing that S is more affectionate, playful, a little more eye contact.No we are not seeing a normal child or a child whose "language is exploding " etc etc but definately something good.He is able to do matching, simple puzzles but his receptive language is completely absent, he has no clue about language or meanings of words. His joint attention and inablity to understand very simple spoken language is what scrares me the most.The min I start getting the slightest clue that he does understand stuff, I can get some positivity back.
So, I contacted our county and there are some agencies offering DIR services but the problem is that they cannot give us 18 hours. they can give us only 10 hours of therapy.That is no good.The philosophy of these agencies is" coaching parents" and that parents are the backbone of DIR.What that means is that both parents cannot be working 100%.The providers will come and coach and play with the child and give tips for the parents on how to interact with your child.
I have been trying to tell my husband this... how can we go on like this with both of us working. It is a very difficult topic at home.I would love to stay home but our green card is through my application and so I have to keep working, on the other hand, he just got done with school and is now wanting to do something with his career but ...he is willing to do anything for S .. but I am frustated because, even if he is home he is not going to be as good as me? Is he really going to practice all the tips that they are going to teach him to do?Even now on several days, we argue about basic things, like" dont treat him like a patient" or "dont try to tell me how I should play with my son" or " nothing is wrong with him," or " he will be fine"I am really confused, should I continue ABA with a touch of DRA for 22 hours a week or should I move to a pure DIR based program for under 10 hours a week with the risk that S is going to be facing the wall for the rest of time.
So, I contacted our county and there are some agencies offering DIR services but the problem is that they cannot give us 18 hours. they can give us only 10 hours of therapy.That is no good.The philosophy of these agencies is" coaching parents" and that parents are the backbone of DIR.What that means is that both parents cannot be working 100%.The providers will come and coach and play with the child and give tips for the parents on how to interact with your child.
I have been trying to tell my husband this... how can we go on like this with both of us working. It is a very difficult topic at home.I would love to stay home but our green card is through my application and so I have to keep working, on the other hand, he just got done with school and is now wanting to do something with his career but ...he is willing to do anything for S .. but I am frustated because, even if he is home he is not going to be as good as me? Is he really going to practice all the tips that they are going to teach him to do?Even now on several days, we argue about basic things, like" dont treat him like a patient" or "dont try to tell me how I should play with my son" or " nothing is wrong with him," or " he will be fine"I am really confused, should I continue ABA with a touch of DRA for 22 hours a week or should I move to a pure DIR based program for under 10 hours a week with the risk that S is going to be facing the wall for the rest of time.
Wednesday, April 1, 2009
desperate mother
While on the trip to NJ,there was an exit to NYC to Sloan kettering cancer center and you can tell the traffic gets dense there.
Of course, they were all not going to the cancer center. But the thought that came through my mind was so weird... the people who come to Sloan, come from far and wide in search of hope,most of whom have been told by their doctors that nothing can be done, things are investigation etc etc, and yet, they must have heard from youtube,google,forums about magical cures, stories of recovery and they go through all this .... in search of hope, happiness.
We were doing the same thing.
I have given bad news to so many of my patients... usually when my terminal patients ask me..
We are in the 21st century and you are telling us nothing can be done? surely there is some specialist, some medicine, surgery or something can get rid of this... usually it starts with rage, and anger,
some of my patients even accuse me of not giving them hope, but I am bound to tell them what I have read and what is evidence based.
And yet, I continue to search for the magic cure..... why ? That feeling of hope is so addictive, so empowering that it makes you do those things.
A few months ago, I was determined that I am going to stop researching on the internet about other things, ABA during work hours and floortime at home and family hours. OT per ABA team.
We will pursue Dan to a certain point and think of diet modification.
That was then,
then my desperate father in law who is so worried about his grandson, sent me a link on Son rise.
I saw the videos many times, showed to my DH and again my hopes rised.... off I went looking again at the internet.
When I am going to stop.
Currently I am researching Homeopathy, then there is Ayurveda, thoughtful house, Hanen, Sonrise, therapuetic listening.... the list goes on and on... when am I going to say .. that's it?
When I went to Dr.N office and noticed how badly kept it was, I realised that desperate moms like me dont care about the beauty of the office. They are so madly in love with the concept of recovery and hope.
If I were to keep my office like that,or not answer my pts questions, they would leave me, I would have no patients.
Of course, they were all not going to the cancer center. But the thought that came through my mind was so weird... the people who come to Sloan, come from far and wide in search of hope,most of whom have been told by their doctors that nothing can be done, things are investigation etc etc, and yet, they must have heard from youtube,google,forums about magical cures, stories of recovery and they go through all this .... in search of hope, happiness.
We were doing the same thing.
I have given bad news to so many of my patients... usually when my terminal patients ask me..
We are in the 21st century and you are telling us nothing can be done? surely there is some specialist, some medicine, surgery or something can get rid of this... usually it starts with rage, and anger,
some of my patients even accuse me of not giving them hope, but I am bound to tell them what I have read and what is evidence based.
And yet, I continue to search for the magic cure..... why ? That feeling of hope is so addictive, so empowering that it makes you do those things.
A few months ago, I was determined that I am going to stop researching on the internet about other things, ABA during work hours and floortime at home and family hours. OT per ABA team.
We will pursue Dan to a certain point and think of diet modification.
That was then,
then my desperate father in law who is so worried about his grandson, sent me a link on Son rise.
I saw the videos many times, showed to my DH and again my hopes rised.... off I went looking again at the internet.
When I am going to stop.
Currently I am researching Homeopathy, then there is Ayurveda, thoughtful house, Hanen, Sonrise, therapuetic listening.... the list goes on and on... when am I going to say .. that's it?
When I went to Dr.N office and noticed how badly kept it was, I realised that desperate moms like me dont care about the beauty of the office. They are so madly in love with the concept of recovery and hope.
If I were to keep my office like that,or not answer my pts questions, they would leave me, I would have no patients.
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