The Genetics in Medicine journal has published a research study in its January 2008 issue detailing a road map towards creating a genetic diagnostic test for autism spectrum disorders. I can only imagine what those who think autism is *only* vaccine-induced must be thinking. This quote from the study intrigued me:
Epidemiologic data support the presumption that autism is primarily a genetic disorder. The calculated heritability of autism is around 90%.
That is a pretty bold statement but one which makes sense, in my opinion.
To read the entire article, follow the link to the Autism News Direct’s report: Genetic Diagnosis for Autism Explored.
In my Google alert for ADHD there was a post by a mom detailing her experience trying to find a pediatrician for her daughter who was recently diagnosed with ADHD. Reading her post leaves me wondering if the black box warning label on most (if not all) ADHD medication has caused pediatricians to steer away from accepting these children as clients.
Read crazymamasusan’s post on her blog: Doctors Refuse to Accept ADHD Patients.
I’d love to hear what others think of this. I’m going to spend some time this evening and see if I can dig anything up on the topic.
I have redesigned the site. I’m not sure that I like it all right now and I may tweak it a bit but for the most part I like it - the layout, the header, etc look good. I might tweak it a bit over the next few days.
More Autism Speaks controversy - this time the organization has sued the owner of a website that was a parody of the Autism Speaks site. The website, http://www.ntspeaks.org, is no longer online after receiving a cease and desist type of letter from Autism Speaks’ lawyers. Evidently the owner of the site was being sued for $90,000 for, among other things, copyright infringement. If you noticed, I used the word “was”; the lawsuit has been dropped. The individual being sued just happens to be underage so Autism Speaks dropped the lawsuit creating a bit of a chuckle among the supports of NTSpeaks.
Yesterday, the owner of the NTSPeaks site (known as abscout) states he is willing to be interviewed on the topic. For more information on contacting abscout check out his post on aspiesforfreedom.com. For more fun on the topic view a post on the Autism Speaks message board started by the one, the only, Autism Diva! As of this blog post there are 10 pages of responses to the Diva’s post.
Last night I was sitting in bed studying for an exam and my daughter came running into the room and hid between my bed and her bed (yes her bed is in my room). There is about nine feet between the door and where she hid so there was no way I could miss her. After about a minute she jumps up and yells “Boo!” I feigned surprise and she started giggling and ran out of the room. As soon as she got out of my sight she turned around and ran back in giggling just as loud as she could. She ducked down between the bed again and then stood up quickly and said “gotta do it again” and ran out. Rinse, repeat. So I asked her “Do you want me to see you or not see you?” She said “not see you.” At this point my son came into the room and hopped over onto my side of the bed.
My daughter ran out of the room again and this time toned down the giggling and ran in and hid again. She jumped up, yelled “Boo!” and I feigned surprise and so did my son. His was a lot louder but hey, he’s six - it’s OK. After a few minutes of doing this my son proclaimed, with a grin on his face, “This is the best part of my life!” It was so darned adorable, I joined him with a big grin on my face while my daughter still “snuck” about with her loud laugh.
Moments like that really warm my heart and make me remember how great it is to be a mom.
Happy New Year everyone!
“What do you want to be when you grow up?”
This is a question that every parent will ask their children at one point in their lives. For a while my son would say that he wanted to be an Egyptologist. Then he switched it and would answer with a question of his own “What makes a lot of money?” I’m not really sure where he got that one from; he likes his “stuff” and he knows that money gets you stuff so maybe that is it. Lately this question has resulted in the answer “I want to work with daddy.” Sounds good, daddy is a networkengineer and Alexander has a love of computers.
The other day while driving home from school we had the conversation again. He said “I’ll go to work with daddy. Then we can take lunch breaks together…and potty breaks together…and evening breaks together, you gotta go home right?” I just started giggling - too darned cute. I called my husband and told him to prepare for potty breaks at work with Alexander in about 15 years. The thing is, Alexander has this amazing memory. Neither my husband or I would be surprised if in fifteen years, at the age of 21, Alexander proudly exclaims to us that he’s ready to go work with daddy hehe.
Gotta love kids!
For those that celebrate, Merry Christmas.
2007 will go down as the first year both of my children “got it” with regards to Christmas. My son has always understood it but prior to this year my daughter didn’t. A family tradition we have is that Santa stops by our house just after dark on Christmas Eve to surprise the kiddos with a special Christmas gift before he heads off across the world to deliver other toys. Last year my son hid from him for a while. Once my son finally acknowledged him he spoke to Santa with his back to him basically. A tad bit anxious but we didn’t push it. My daughter was comfortable with him as she was curious what was in his big red sack.
This year the second the kids heard the jingle of the bells my son hid again but my daughter beelined for the door. She peered out the window and gleefully screamed “Santa!” My son got a huge grin on his face so I told him I’d hold his hand and we’d go see what was up. He said “I have anxiety” and I told him it would be OK, we’d just go see. Within seconds he reached his comfort zone and started in talking to Santa. Santa surprised my daughter with the much desired blue Cinderella dress that she asked for and my son was the very excited recipient of a new game for the Nintendo DS (Mario Party DS). They continued to talk to Santa and even sat on his lap (no visits to a mall Santa this year). When it was time for Santa to go they both gave him big hugs.
Now I know Christmas isn’t all about Santa or presents but for me it was heartwarming to see both kids really get into it this year. Definitely a lot of growth on both of their parts.
This is a bit off-topic but I do have the catch-all category of Mutterings so it has a place to go. I wanted to take a minute to brag on my father. He and a friend are starting up a new company called Superstition Wilderness Adventures. They will lead hikes into the gorgeous Superstition Mountains here in Arizona. My dad is a nature lover and makes a point to pass on his knowledge about the wilderness to my children as well as my nephews. He has a true passion for the outdoors and is taking the leap and turning his passion into a dream-come-true. My dad and the co-founder of the company are both members of the Superstition Search and Rescue so not only are they two of the most knowledgeable men with regards to the Superstition wilderness, they are also more than qualified to be hike leaders. Their knowledge and passion for these mountains will undoubtedly lead to a fantastic hiking experience for all. I’m proud of you dad - having a dream and going after it; you’re an inspiration to all.
Many autism and Asperger’s parents groups in Arizona are trying to get a bill out of committee that would require insurance companies to provide insurance for autism, Asperger’s Syndrome, PDD-NOS and other spectrum conditions. Arizona would not be the first state requiring such coverage but would most definitely be one of only a handful of state’s mandating this. This is a very important topic for me. In Arizona, only children with a diagnosis of “autistic disorder” qualify for services past the age of six. What this means, for me, is that any therapy needed for my son comes out of my pocket. At sessions that can average $100/hour, the money adds up quickly. If this bill were to pass then a huge financial burden would be lifted from my shoulders, and from the shoulders of many other parents in Arizona.
A candlelight vigil to support this autism insurance bill will be held on January 29, 2008 at the Arizona State Capitol. Organizers are hoping that with a large turnout legislators will see just how many people are affected by autism spectrum conditions in the state of Arizona. I will be sure to post updates on the topic as they become available.
This year, my husband’s company offerend an insurance plan that would provide therapy for children with developmental disorders through the age of six. I am glad for their forward-thinking but unfortunately for us my son is already six. Had this plan been available a year ago we likely could have saved thousands upon thousands of dollars.
Wow, it has been nearly four months since I last posted. Life happened. Actually something really big happened, I decided to return to school to finish my bachelor’s degree. For the first time since 1994 I signed up for a college course. Wow, 13 years - amazing. I am considered a junior but since I switched majors I am busy taking a few 100 and 200 level courses that are required for my new major. What is my new major you may ask? Speech and Hearing Science. Yes, that’s right, my goal is to become a speech-language pathologist. I feel drawn to the field after I’ve seen the strides my daughter has made in the past year with the help of an SLP plus the gains my son has made with the SLP-led social skills group. In addition to being a parent of children who receive speech therapy I was also a participant in speech therapy as a child. I could not pronounce my Rs; it took two years of therapy before I was able to do so. I am in my mid-30s (gosh it hurts to say that!) and I still remember the day I pronounced the word mirror correctly. Think about it, the word mirror has the R sound in the middle and the end of the word. For years it was miwwow, then I progressed to mirrow then finally I managed it all…MIRROR. Triumphant at last! I then graduated from speech therapy. I’m thinking my experience as a patient and a parent will help tremendously when it comes to actually being a practicing SLP.
As part of my return to school I have joined NSSLHA(pronounced nish-luh) - the National Student Speech-Language Hearing Association; NSSHLHA is a part of ASHA- the American Speech-Hearing Association. The NSSHLA chapter at my University held a brunch and silent auction last week and I decided to attend. I was absolutely nervous about attending because my courses for the Fall semester were online and I had only been to campus one time. When I arrived I got the nerve up to ask a couple of girls if I could join them at their table. I soon found out that everyone in the room was either a 2nd year Master’s student or a Doctoral candidate. The only undergrads, aside from myself, were sitting outside working the raffle ticket table. Boy did I feel out-of-place. Anyhow the conversation turned towards internships, IEPs, METs, etc and I was able to jump right in on the conversation. I also met a few professors but shied away from the two Deans in attendance. All-in-all it was a great experience even though I was so nervous going in to it. My courses for Spring 2008 are also online but starting in the summer I’ll be on campus - I’m planning on taking Physics 101. Don’t you know I’m now kicking myself in the butt for not taking the AP Physics exam in high school! *laughs*
In my hiatus from blogging the one year anniversary of my daughter’s diagnosis came and went. I made a little post about it to some friends and am going to add it here and post-date it. It’s been a long year and something I’d like to memoralize on my blog.
