Daniel (who is 6 now) does have tantrums when he gets thing
taken away or when he is told “No”. For the most part, they are
pretty mild and can be controlled by either ignoring him or telling him to calm
down. We were told that he has the mentality of a 3 year old, so, we are
hopeful that this is a stage and that they will get better. Daniel was biting
and still does occasionally if you tell him “No”. It appears that
his outbursts have gotten milder as his ability to express himself through
basic speech has improved. I really feel that the speech challenges that our
kids face are key to the “acting out” that we are all experiencing.
I can only imagine how frustrating it would be to not be able to verbally
express my feelings.
Thanks,
RICK
From:
11q_disorders@yahoogroups.com [mailto:11q_disorders@yahoogroups.com] On
Behalf Of Erin Sent: Thursday, June 04, 2009 7:53 PM To: 11q_disorders@yahoogroups.com Subject: [11q_disorders] Jacobsens Syndrome Survey
I know some of you have filled out the survey
for me before. But I added another question to it. I am also looking for
questions that you might want me to add to the survey also. I moved the website
to another host. If you have not done the survey yet and want to here are the
questions.
-How old is your Jacobsen's Syndrome Child now?
-Does your child have any other deletions or duplications?
-When were they diagnosed with Jacobsen's Syndrome?
-What are some of the medical problems your child has?
-Any surgeries done?
-What are some learning disabilities your child has?
-What were some of the complications at birth?
-How early was your child born? weight?
-Length of stay in hospital?
NEW QUESTION:
-Any Behavioral Problems?
You can just send me the answer to the new question and I will add it to the
survey you already sent.
Also i just added 2 more of Dr. Grossfeld's papers to the site. Its under
resources and its the last 2 buttons on the page.
Also here is the new sites address. Im trying to get it shortened. if anyone
has anything else that they want me to add let me know.
I know some of you have filled out the survey for me before. But I added another question to it. I am also looking for questions that you might want me to add...
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They might not be able to give you the address of this family due to Hippa Law but ask if they have an address and they will mail this person requesting they...
Its back up and running. I will be doing redesign to the site this week. Please let me know if there is anything you would like to see on the site that is not...
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