Moms of Special Needs Kids

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Comment by Kristy DeWalt on August 4, 2009 at 2:09am

Hi Krista, my is Kristy Dewalt and I can defanitly relate to your group. I have a son that is 5 yrs old now. But when He was about 1 yr & a half his doctor diagnosed him with Cerebral Palsy. I was married as well and at the time, even prior to Any parents heart breaking news. His father and I seemed to be holding up pretty well and our marriage was stronger than it ever had been. We had to wait 7 months until our son was able to come home and be able to stay home. But unfortunatly it was to hard for him to handle and our marriage didn't survive. Although now we have become closer and as strange as it may sound. We are better friend's now than we were when we were married. And most importantly he is still in Our Little Man's life. And as time has gone by he is finally starting to come around and trying to have that bond with our son and be the father he wanted to be. If that makes any since, lol! I have a Blog that I'm trying to build up and some of my post talk about my son and his diagnosis and some other experiences I have went through and battled being a single stay home mom & going to school online for my baclors in Computer Information Systems so I can pursue Web Dev & Design .I'd like for you to check it out sometime and since I haven't been blogging for too long I haven't built up the the audiene/traffic that I know I'll have sometime in the near future :) Go to http://twisttafate.com and if you like it, Do me a little favor and tell others about it as well. I look forward to talking to you sometime and if you ever want to talk feel free to leave a message or you can email me at twisttafate@yahoo.com. I hope you have a good week!! P.S. Sorry for the long comment, But from one mom to another mom of a special needs child, I know from experience when I hear from other mom's and their stories. It helps me as well knowing that I'm not alone ya know. Hope to hear from ya soon :)

Comment by Jean Myles on July 24, 2009 at 11:08am

Oh and I forgot to share with everyone that my son was on the cover and throughout this month's issue of the Autism Societies magazine. I was interviewed also! If you get the magazine check it out!

Comment by Jean Myles on July 24, 2009 at 11:07am

Welcome Holly! I look forward to checking out your blog. My son is high functioning autism too, but he is only 2 1/2.

Comment by Holly Collins on July 23, 2009 at 2:48pm

Hi, I am new to this site and group and not only did I want to say "hi " but also find other moms of kids with high functioning autism in the 10-15 year old age group and live in Massachusetts, I was hoping to start a social skills group??

You can also find me over at www.fearlessfolks.com where I blog about my two kids who have autism (always interesting!!) ... I would love to hear from you even just to say hello!!

Thanks!

Holly

Comment by Judy on July 15, 2009 at 8:02am

Hi Moms,

SPD (sensory processing disorder) is a spectrum disorder near and dear to many hearts here. Please help obtain diagnostic decognition of SPD for children with SPD, ADHD, Autism and other conditions.Please read through the entire post and pass it on.

Below is a letter from the Sensory Processing Disorder Foundation with a letter that can be sent from you to your child’s pediatrician, psychiatrist, other physician (MD), or osteopathic doctor (DO).


Dear Parent,

We need your immediate help with an important effort to obtain diagnostic recognition of Sensory Processing Disorder (SPD) in the upcoming revision of the Diagnostic and Statistical Manual (DSM).

The DSM committee has asked us to provide research showing that doctors would use an SPD diagnosis if it were added to the DSM-V. Showing use by international physicians is important, too, because diagnostic recognition in the DSM will lead to inclusion in comparable international manuals.
In response to the DSM committee’s request, we have developed a very short online physician survey (it literally takes a doctor three minutes to complete).
WE NEED TO GET THIS SURVEY INTO THE HANDS OF PHYSICIANS
WHO UNDERSTAND AND SUPPORT SPD AS A DIAGNOSIS.
You and everyone you know are crucial to this effort.
If you are a parent, please ask the pediatrician, psychiatrist, other physician (MD), or osteopathic doctor (DO) who treats your child to go online and take our survey. If you are a clinician, a teacher, or another professional, please ask any physicians you know - especially those familiar with SPD - to take survey. They will do this as a favor to you.
WE HAVE TO BEGIN ANALYZING DATA ON AUGUST 5 TO MEET OUR DEADLINE.
We will not get enough results in time unless you help us!
Think of the best way to approach doctors you know to gain their cooperation. A few ideas are:
• If you have the doctor’s e-mail, simply cut and paste the message below (which includes the URL link to the survey) into an email to your doctor. Use a “subject” line sure to grab attention such as, “I need your help quickly.” Add a personal plea explaining the importance of this survey to you. Ask for help as a personal favor to you and your child or to you and your clients. Be sure to stress the deadline for completion.
• If you don’t have the doctor’s e-mail, call their office and ask for the appropriate person who handles patient/colleague requests. Explain why you are calling (emphasizing the importance of the doctor’s participation as a personal favor to you and your child or to you and your clients). Explain that it is an online survey and ask the intermediary to provide an e-mail address where you can forward the doctor the survey link and instructions. Be sure to mention that the survey takes less than 3 minutes. If that person will not provide an e-mail, ask to leave a message so that your may speak directly to the doctor about this effort and gain their cooperation.
• If needed, stop by the doctor’s office to personally deliver the request (you may have to call ahead and ask for a time when you can do this). Ask the doctor to complete the survey as a personal favor to you and your child or to you and your clients. If the doctor is not available, ask to speak to the doctor’s assistant or another staff member who will personally deliver your request to the doctor.
• As a last resort, fax or mail the request to the doctor. Be sure to include the information in the e-mail below including the URL.
Emphasize the need for immediacy in your note and give the deadline to complete the survey. Explain that the URL must be entered EXACTLY as shown (direction of slashes, lower case vs. caps, etc.). Give them the option to call or e-mail you so that you can forward the survey link.
Every survey that a doctor takes will help!
Please support the DSM initiative by recruiting your child’s physicians or your physician colleagues to take our survey so we can show that doctors would use the SPD diagnosis if it were in the DSM-V.
One last thing: If you are involved in online support groups for sensational families or blog about your life or work with children who have SPD, forward this message or post a link to the survey and help us reach out to physicians who understand and support SPD as a diagnosis. We are shooting for 2,500 responses in three weeks. To have a chance at that number, we need to mobilize grassroots support worldwide. Give the DSM initiative a push: Hit the Forward button to others who support the DSM initiative.
Thank you. I’ll keep you posted on our progress.
Warmest personal regards,

Lucy Jane Miller, PhD, OTR
Founder and Executive Director
Sensory Processing Disorder Foundation

SUGGESTED COVER MESSAGE:

Dear (YOUR PHYSICIAN’S NAME),
The DSM-V committee is requesting data from physicians about Sensory Processing Disorder. Below is a link to a three-minute online survey. The survey will provide data about whether the new diagnosis would be used in the medical community. By taking this very short survey, you will help answer the usefulness question.
The millions of children, adults, and families living with SPD need the diagnostic status and standards of assessment and treatment that come with diagnostic recognition in the DSM. Diagnostic recognition will also make it easier for families to get reimbursed for the services their children need and for scientists to receive the funding they need to continue researching the disorder.
Thank you for taking a few minutes to answer the basic questions in the survey.
If you have any questions about this survey, please contact Kim Leserman at 310.937.9992.
To take the survey, click on this link or copy the link into your browser to begin: http://www.surveymonkey.com/s.aspx?sm=Z_2fq3hEB9sY77Dej5CDCRqQ_3d_3d
Sincerely,
(YOUR NAME)

Comment by Aimee on July 15, 2009 at 6:22am

Thought I'd share this, if anyone's interested:

Participants needed for LENA Foundation Natural Language Study

Please pass on to interested parties -thanks Lisa Geng

~~~start fw message:

LENA Foundation has been conducting research for over four years as part of the LENA Foundation Natural Language Study and we are beginning a new nationwide study with children 2 months – 48 months of age, including children diagnosed with language or developmental delays/disabilities.

Families who participate will receive $100, language feedback reports, and two free items of LENA clothing.

Could you please let me know if you would be willing to post information about this opportunity to your group? Full study details and an online application form can be found at: http://www.facebook.com/l/;http://www.lenababy.com/languageresearch



Many thanks,


Jill Gilkerson, Ph.D.

Language Research Director

LENA Foundation

5525 Central Avenue, #100

Boulder, CO 80301

1-866-503-9917

research@lenafoundation.org
--------------------

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Comment by Dawn on July 13, 2009 at 8:38am

I LOVE the song/video at the top of this page. I didn't have those feelings because my son is adopted BECAUSE he has special needs. But, I know many parents (including his birthparents) do. I'll definitely share it!

www.twitter.com/msdawn430

Comment by Robin Hartman on July 13, 2009 at 5:51am

Here are a few suggestions for sensory smart activities for those with tactile defensiveness: http://www.handmadenews.org/article/index.php?id=2908

Comment by Christina White on July 10, 2009 at 11:48am

Hello, You to this site. Recommend by a friend I have 3 childern my oldest
was Has PDD(NOS). when she was 7 now going into the 9th grade. I thought i was alone.It's nice to know there are other people out there that have the same or similar issues. I'm glad i found this site.

Comment by Robin Hartman on July 6, 2009 at 9:24am

Just in case anyone needs one. Here is a how to for a weighted blanket: http://www.handmadenews.org/article/index.php?id=2015

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