Monday, June 22, 2009
"Please join us tomorrow (June 23rd) at Coco's Meeting at 6:30 in the backroom of the Paradise Valley location (Tatum and Cactus). We will have a surprisespeaker who will speak about a new study their non-profit is designing andwhat kind of applicants they are looking for.
We will then have Dr. JoelMorgan speak. Here is his bio:
Dr. Joel Morgan is the medical director of Pediatric Solutions MedicalCenter, where the focus is in Naturopathic family care, as well as thespecialty treatment of individuals with autism, ADHD/ADD, asthma, allergiesand intestinal health issues. Dr. Morgan graduated with honors from ArizonaState University earning a degree in Nutrition and later received hisDoctorate of Naturopathic Medicine from the Southwest College ofNaturopathic Medicine. He completed a residency in family practice with afocus in the treatment of children within the Autism Spectrum Disorders.His approach to autism stresses the importance of the relationship betweenphysician and patient and their family, centered on the whole person, whilemaking use of all appropriate therapeutic approaches, alternative andconventional.Dr. Morgan became involved in the world of autism through his experienceswith his son. He is a listed Defeat Autism Now! Doctor, has trained withDr. Bryan Jepson, Dr. Arthur Krigsman and Dr. Andrew Wakefield at theThoughtful House Center for Kids in Austin, TX, and completed medicalrotations at the Melmed Center, a leading facility in the assessment ofbehavioral, educational and developmental challenges in children and adults;and the Hamilton Elementary Medical Center, a district-wide, free healthcare clinic that serves the poverty-stricken families of the Murphy SchoolDistrict."
Thank you, Cynthia Macluskie for this information!
Lecture on the developmental aberrations in the Autistic child.
This two hour lecture will cover the developmental aberrations in the autistic child. It will address what can be done about autism to stimulate the Autistic/PDD/ Asperger child to a higher level of function.
Time: 6-8:00 pm.
Location: Sunflower Market, 4402 North Miller Road - Scottsdale, South of Camelback on Miller between Hayden & Scottsdale Rd. 480-941-6001
By: Healing Pathways Medical Clinic, 2133 Warner Road - TempeUtilizing naturopathic and biomedical adjuncts to support the biochemistry of the body. Utilizing neuro developmental therapies and models to complete developmental milestones and organize the body and brain to higher levels of function. Providing education to the caregivers and healthcare professionals. AZ Dept. of Education certificates for Professional Development CEUs available for $20
Thank you, Kelly Reedy, for this information.
P.S. Don't forget about the Parents Night Out, July 10th!
Saturday, June 20, 2009
The weekend was stressful for everyone, including Joey. With people staying at our house, he had less of my attention than he is used to. Plus, he is so set in his routine that he hates when any part of it is disrupted. He loved having Lisa, Dawn, Shannon and Skye over and still mentions their names, which is huge, but his behavior was definitely severe.
The day of the wedding, well...let's just say he was less than compliant getting his tux on. My 2 cousins had to wrestle with him to get him dressed and my sister-in-law had to carry him into the limo. He stood for some prep pictures in our house but did not smile and did not want to take any of just the two of us. This was to be expected because he runs hot and cold when it comes to getting him to take pictures other than snapshots.
When we arrived at Corte Bella, he did not want to get out of the limo. He was dragged out by my family and was disheveled. He ran around and screamed for 30 minutes until it was time to walk down the aisle. He lined up behind the flower girl but still did not want to comply with the photographer. I was just happy he still had his vest and shoes on. This was a bonus for me.
As it approached the time for him to walk down the aisle, my Dad offered him the ringbearer pillow. He had a meltdown and I threw the pillow, narrowly missing the chocolate fountain. When it was his time for him to walk, he ran away and sat down on a seat outside. I continued my walk down the aisle and to my surprise, as my parents gave me away, I turned and saw my Joey running down the aisle towards me. He grabbed my hand and then Bryan's and stayed with us during the ceremony. He wanted to light the unity candle, which was not good, but when it came to the sand ceremony, it worked out perfectly that I had extra sand just for him. I let him pick his color and he poured with us. It was perfect.
There was just one more thing: the family vows. When the minister asked Joey if he took Bryan as his stepfather, Joey just nodded his head and then silently said yes. There wasn't a dry eye in the house. Everyone let out a collective "awww.'
Joey sat well for some pictures and the photographer got some really great shots. It was also a good idea that the Minister gave us to give him is own special gift, which was 2 custom made Bride & Groom Legos to give Joey. He called them Mommy Princess and Bryan Prince. He loves Legos so it was a perfect gift! He held them all night.
I also had a babysitter at the wedding to watch over him while I was busy taking nighttime pictures or cutting cake. She is a trained caregiver for Autistic children, plus has a son on the Spectrum, so I knew she would have patience with him.
The night was a success. I'm so glad it worked out. My best advice to couples facing the same adventure is to set realistic expectations and have help on hand. Truly knowing what your child can handle and having people who understand them is the best you thing you can do for all involved.
"Intravenous immune globulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG immunoglobulins (antibodies) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment in three major categories:
Immune deficiencies - Immune deficiencies such as X-linked agammaglobulinemia, hypogammaglobulinemia (primary immune deficiencies), and acquired compromised immunity conditions ([secondary immune deficiencies), featuring low antibody levels.
Inflammatory and autoimmune diseases.
Retrieved from http://en.wikipedia.org/wiki/Intravenous_immunoglobulin
How does IVIG helps our kids?
"The rational for use of IVIG in children with autism has been (1) the assumption that bowel colonization with certain viruses (measles and rubella viruses) can result in an autoimmune reaction resulting in symptoms of autism (Wakefield, Gupta), and more recently (2) that PANDAS or PITAND-type pathophysiology can be responsible for the development of certain cases of autism. An additional boost for IVIG use in autism have been recent reports describing the appearance of classic autistic symptoms in patients following Herpes simplex encephalitis. Despite of the initial optimism generated with Gupta's reports, later experiences with IVIG therapy in autism have failed to duplicate his results."
"Even with the reported failures of IVIG treatment in autism, it will continue to play an important supportive role in the future therapeutic approaches to this condition, since IVIG appears to have a protective effect on the brain tissue. Unfortunately, the cost of this treatment is very steep and with uncertainty of the outcome of treatment it should be considered only in well chosen patients. Again, the intensity and the frequency of treatment and the duration of its benefits (if achieved) are not known."
Retrieved from http://www.webpediatrics.com/autism2.html
"An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. Special sensors (electrodes) are attached to your head and hooked by wires to a computer. The computer records your brain's electrical activity on the screen or on paper as wavy lines. Certain conditions, such as seizures, can be seen by the changes in the normal pattern of the brain's electrical activity."
Retrieved from http://www.webmd.com/epilepsy/electroencephalogram-eeg-21508
The EEG/Autism Connection:
"Approximately 20% to 35% of individuals with autism have a seizure disorder. About one in four autistic individuals begin to have seizures during puberty. The exact reason for the onset of seizures is not known, but it is likely that the seizure activity may be due to hormonal changes in the body. Sometimes these seizures are noticeable, (ie. associated with convulsions); but, for many, they are small, subclinical seizures, and are typically not detected by simple observation. Some possible signs of subclinical activity include the following: exhibiting behavior problems, such as aggression, self-injury, and severe tantrums; making little or no academic gains after doing well during childhood and pre-teen years; and/or losing some behavioral and/or cognitive gains. "
"Chelation therapy is the administration of chelating agents to remove heavy metals from the body. For the most common forms of heavy metal intoxication—those involving lead, arsenic or mercury—the standard of care in the USA dictates the use of dimercaptosuccinic acid (DMSA). Other chelating agents, such as 2,3-dimercapto-1-propanesulfonic acid (DMPS) and alpha lipoic acid (ALA), are used in conventional and alternative medicine."
Retrieved from http://en.wikipedia.org/wiki/Chelation_therapy
Why do Autistic people try this?
"Our children are exposed to more and more toxic metals and chemicals every day, such as mercury, lead, food additives, pesticides, vaccination toxins, and so on. In some children, especially those on the spectrum, these toxins build up in their systems due to a “metal-metabolism” disorder.In other words, they are genetically unable to detoxify sufficiently. This causes neurological as well as digestive problems. As a result, chelation therapies to remove toxic metals including thimerosal (mercury from vaccinations) from the body are now a cornerstone with DAN (Defeat Autism Now) doctors and other experts treating childhood neurological & behavioral conditions."
"Mainstream medical practitioners tend to believe that autism is probably caused by a combination of genetic and structural differences. As a result, they stress a combination of behavioral therapies and, when warranted, pharmaceutical treatments. There are many doctors and therapists, however, who believe strongly that autism is caused by biomedical factors (toxins, immune deficiencies, inflammation in the "gut," and/or a combination of these and other issues).
The Defeat Autism Now (DAN!) project, created by the Autism Research Institute, created an approach to autism treatment called the "DAN! protocol" based on the biomedical theory of autism. Many parents believe that DAN! doctors are the best choice to treat their children with autism, and there are many testimonials to the effectiveness of the treatments. DAN! doctors, however, do often prescribe treatments and diets that mainstream doctors question or even denounce."
Friday, June 19, 2009
Why do you have multiple shows about multiples? Why not pay attention to the news and what is devasting families right now: living with Autism.
Autism affects 1 in 150 children. That means 1 in 150 families are affected, along with their friends, caretakers and teachers.
According to the CDC, there were only 67 births of 5 or more children last year. Is that why we care? Because it is less common than Autism?
TLC or even the WE channel should get their heads out of their butts and start putting on television programs that will help other people. Isn't that the basis for The Learning Channel (TLC) in the first place?
With budget cuts nationwide, resources are dwindling. Why not have a show that focuses on a family going through the motions of getting help, getting a diagnosis, getting therapy, preparing their child for transitions in their life, etc? The show could focus on 1 family or spotlight several families. I know many families that they could focus on: one that has recovered her child; 2 that have 1 child with ASD and 1 that is NT (neuro-typical); and even 1 that has 6 kids and 8 nephews with Autism.
TLC, what are you waiting for? There are many families out there that feel so distressed after the diagnosis that they don't know where to start on the journey that is living with Autism Spectrum Disorder. That's one of the reasons I started this blog; to put everything I have learned or gone through in one place, hoping that maybe it will help someone else.
What have you done to help?
1 of many voices you're not hearing
Thursday, June 18, 2009
"The odds of winning the U.S. Open twice: 1 in 1.2 Billion. The odds of being diagnosed with Autism: 1 in 150. The odds say it's time to make a difference."
I'm contemplating doing the 5k walk for Autism Speaks in November (Walk Now for Autism). Joey D's Crew is already doing the Zoo Walk in October.
One more thing about Autism Speaks: They have a huge social network that you can sign up for on their website. It's a great way to feel like you're not so alone because no matter how much you feel that way, there are many more people out there like you, feeling the same thing you are. Join today!
Here is the link to the article and video:
Article & Video: http://www.azcentral.com/12news/news/articles/2009/05/28/20090528autismresearch05282009-CR.html
Wednesday, June 17, 2009
Autism Society of America Greater Phoenix Chapter
And ACT Today
Parents helping Parents!
5:00 Registration and cocktail bar open
5:30 Autism: finding success in the first year
6:00 Co-morbid conditions
6:30 Recovery: Mark tells his story and we share the studies that support recovery.
7:00 Parent led therapies
8:00 Special Education: Parents as advocates-preschool through high school. Holly Reycraft is a parent, a PINS Specialist, parent advocate and has many years of experience as a special education teacher and department chair and guidance counselor.
9:00 Dr. Joel Morgan: Parental Guide to the Gut. Dr. Joel Morgan is a DAN doctor, naturopath and a father of a child on the spectrum. The gastrointestinal system (gut) can be viewed as the beginning and the end of a story. The health of the gut, which plays many roles, determines the overall health of our body. What this talk is intended to do is empower parents to become the spokesperson of their child’s gut by giving an overview of the signs and symptoms of the gut, along with decoding the particular conditions associated with such signs. Additionally, clinical evaluation and treatments will be covered, and we will touch on the expanding knowledge of the role of intestinal biofilms in chronic gut conditions.
10:00 join us in the lounge for conversation and friendship
When: Friday July 10th
Where: The Ritz Carlton, 2401 East Camelback Road, Phoenix
Cost: $10 donation requested per person
Valet parking is free
Cash bar and restaurant onsite
Lounge area available throughout the evening
Thank you, Cythina Macluskie, for this information!
We had a busy day planned and Joey woke up early, which means that it will be difficult to get him out of the house. He was on "Lego talking" which is You Tube Lego movies. He was angry that I told him to stop what he was doing. He told me the movie was not done yet. As I frantically tried to get everything ready for our 1st meeting with DDD (Department of Developmental Disabilities), I realized his backpack zipper was broken. One more thing that I needed to take care of! Joey eventually stormed half way down the stairs before declaring that he wasn't going any farther. I walked out and closed the door, knowing that he would soon follow, but in my rush, left behind all the paperwork I thought I needed for the meeting.
He was inevitably grumpy on the drive there but shortly before we arrived, asked for his daily muffins and told me he was happy.
Joey did well at DDD but as usual, made no eye contact and played by himself. That's exactly what the man wanted to see. At this point, it's been a few months since the paperwork process began. The man assigned to my case put him in the "at-risk for autism" category and advised me that someone from long term care would be calling me soon, as well as the case manager who will get services set up for Joey. I think it's too early to get excited but I feel like we made it through a very important roadblock. Usually, if you have the PDD-NOS diagnosis, you're not a severe enough case for help. I believe that no child should go without the help they need, especially before they enter school. Now is the time to make the greatest strides.
I did make a point clear to the man giving me the green light: I don't need a lot. I just want the services that they refuse to give private paying customers. This system is a joke. I don't want respite care. I just need habilitation for Joey.
To Be Continued...
Monday, June 8, 2009
I previously worked as an Insurance Agent for a call center for over 5 years. During that time, I went through many life changes. Giving birth, separation, divorce, single motherhood, engagement and planning a wedding. Let's not forget, attaining my Master's Degree as well. I was forced out of that job this past January; partly because of all the FMLA I used for my son since his diagnosis last September. You see...I switched to part time when my son was born and returned to full time when my first husband split. I so wanted to return to part time but due to my "corrective action" status, I couldn't. They wanted me out...and I obliged.
Then, I went to work for an independent insurance agent, all the while yearning to just be home with my son.
Three months in, just as they wanted me to go to straight commission, I split...3 weeks before my wedding.
Now, I teeter between what I should do: return to work full time, get a part time gig, work from home or stay at home completely with no other job title than "Domestic Engineer." I like to call myself the "CEO" of this family. It makes me smile...what can I say?
I remember back to when my son got his diagnosis. The doctor said, "you're not going to continue to work, are you?," as if to say "when will you find the time to fit work in?"
I love being home with my son but really should be contributing to the family bank account. My new husband tells us we'll be fine but that is simply not true.
I got offered a job today for part time at-home call center rep for Alpine Access, who contracts employees for big time employers. My contract would have been with Sprint and the hours were great: 5 hours per day, 5 days a week, mostly 4a.m. to 9 a.m. However, the training was full time hours for 3 weeks. I could have worked it out to have Joey at a nearby daycare. Not the best situation, because as I am finding out with this camp he's in now, he usually just isolates himself from the others. Who wants to see their kid do that and play all by himself?
The big issue was that I had been on a waitlist for months to be a part of SARRC's jump start program which runs simultaneously with the training. I've already paid my $500 fee and found out today that there was no way I could enroll him in a different session. So, I had to email the recruiter and tell here she wasted her time; the position would just not work (I said it a lot more eloquently than that).
I feel guilty for many reasons. I feel bad for even thinking about taking time away from Joey. And I wasted the recruiter's time. I cannot win.
I have worked since I was 16 years old; been full time since the age of 18. I think it's a hard thing to let go of. The independence. The money. The knowledge that I stimulate my brain with something other than Yo Gabba Gabba.
Trust me...I know I belong home with my son. But for some reason, I feel I have let everyone in my life down. I haven't let Joey down and that's all that matters. I just hope he will always be proud of me.
Maybe I shouldn't even look for work for a while. Let the 401k and savings accounts dwindle. It could be a lot worse. It's my time to focus on healing my son as much as I possibly can. I just need to accept what life has handed us and do the best I can with it.
Isn't that God's way?
Sunday, June 7, 2009
Too many of our Autism kids have severe gut problems. I'm hoping that slowly eliminating and substituting items in Joey's diet will show improvement, at least in his constipation.