Here's a round-up of stories about autism that we stumbled upon this week:
1. The New York Times published this story about people with autism who are navigating adulthood and independence. Best of all, it was published on the front page of the Sunday edition – three cheers for awareness and education!
2. Parent are urging Governor Jerry Brown sign Senate Bill 946, a measure mandating insurance coverage for autism treatment. Brown has until October 9.
3. A recent study at Columbia University's Mailman School of Public Heath and the Harvard Medical School reveals that children with autism and gastrointestinal symptoms have abnormalities in levels of genes for enzymes that break down sugars and for molecules that transport them from the lumen of the intestine into the blood.
Sometimes it seems like a groundbreaking study, fascinating new findings, or an article bringing awareness and insight to the general public surface each and every day. What stories have piqued your interest lately?
Recently, I attended a training seminar that focused on managing inclusion, in the workplace, along with understanding how much diversity there is in the workplace. At one point, the seminar focused on how quickly we judge others when we first see them, “you never get a second chance to make a first impression”
Now, that in itself is nothing new or revolutionary, but it did get me thinking about how Carly is and will be viewed and judged as she grows up. I think that every parent with a child or children with special needs is well aware that their child or children will be treated differently just because they have a “disability” rather than on their true talents and abilities. However, how does their disability affect us as parents?
Are we viewed differently by other parents? Coworkers? People on the street? Are we included or excluded from certain activities or conversations?
I have experienced numerous reactions, from others, including “Wow, you are so blessed to have her” to “It must be so difficult and challenging to raise a child with Down Syndrome” I either reply with “Thank you” or “About as difficult as raising our two other kids”
As a parent of a special needs child, have you ever been treated differently? If so, how does it make you feel and how to do you respond to either positive or negative comments?
Are you included or excluded?
Upcoming fall courses include:
Understanding Autism Spectrum Disorders
This is an online class. Gain an understanding of the characteristics and incidence of autism and the implications for children's learning, behavior and ability to process information. Explore the latest research on potential causes, best practices for assessment and intervention, areas of impairment, as well as current legal and ethical issues related to autism services.
• Enroll through Sept. 26 and complete by Dec. 3. Passwords issued starting Sept. 26.
• $645 ($675 if postmarked after 08/29/2011). Enroll in section 112ADL100.
Applied Behavior Analysis Strategies and Interventions for Autism Spectrum Disorders
This is an online class. Examine applied behavior analysis principles and how they can be used in an educational environment to teach various skills and support student behavior. Examine such strategies as positive reinforcement, teaching of functional-equivalent replacement behaviors, shaping, prompting, errorless learning, discrete trial teaching, as well as other naturalistic behavioral strategies.
• Enroll through Sept. 26 and complete by Dec. 3. Passwords issued starting Sept. 26.
• $645 ($675 if postmarked after 08/29/2011). Enroll in section 112ADL101.
Advanced Seminar in Autism Spectrum Disorders
Conduct both observational and literary research reviews. Develop your capacity to communicate effectively about the autism characteristics, current research and evidence-based practices by giving oral and written presentations about identified topics.
• Fridays and Saturdays, Sept. 23, 6-8:30 p.m., Oct. 7, 5-7:30 p.m., Oct. 8, 9 a.m.-2:30 p.m., Nov. 5, 9 a.m.-2:30 p.m. and Dec. 3, 9 a.m.-2:30 p.m.
• Sacramento: Courtyard by Marriott, 4422 Y St. and MIND Institute, 2825 50th St.
• $550 ($575 if postmarked after 09/09/2011). Enroll in section 112ABD103.
...About Prenatal Testing and Eliminating Imperfection
Not everything can be detected in an AFP, a CVS, an ultrasound or an amniocentesis. As far as I know, those tests will not determine if your child will have mental illness, heart disease, obesity, cancer, diabetes, Parkinson's, Alzheimer's, autism and the list goes on. Or do we have tests for these things in the works? Shudder...Those tests can't tell you if your child will be happy or a contributing member to society. They can't tell you if your child will grow up to be a criminal, a serial killer, a child molester or a rapist. They can't tell you if your child will grow up to be bully or a thief. They can't tell you if your child will have motivation or drive or end up being homeless. These tests won't tell you if your child will stand out, or be homosexual, or have a learning disability or be an outcast because he or she is too tall, too short, too skinny, too fat, too pretty, too ugly, too blond, too dark or too anything. I certainly know that the prenatal tests will never tell you if your child will be in a car accident or a near drowning or take a bad fall or have a birth trauma. There is NO SUCH THING as a perfect child and having those tests to rule out the forbidden DOWN SYNDROME or any other detectable birth "defect" doesn't guarantee that you will have that unattainable picture perfect human being. I'm sensitive now, more than ever, to this obsession over early detection for the purposes of eliminating "imperfect" unborn children. There is a push to eliminate children like Joaquin and Sofia. I wish people would understand that "disability" is actually very natural and it's everywhere. People come in all shapes and forms and abilities. I find it impossible to find anyone in the world that doesn't suffer from some sort of challenge or "disability". Wear glasses? Ever had braces? On a diet? Have a bad back? Ever need surgery? Need coffee in the morning? Ever had a headache? Ever need help with anything? Would you say you are perfect? Would you say you are totally healthy? My bet is each and everyone of us has some challenge or special need that they deal with regularly.
I guess this is my way of saying (and this is ONLY MY OPINION) that I don't think anyone should enter parenthood unless they understand that you take on ALL SORTS of risks, trials and tribulations, heartaches, and disappointments when it comes to having a child and you are signing up for the JOURNEY. Wherever it may take you. It's a huge responsibility. And it's a privilege. So if you aren't up for the challenge, don't have a child. To the medical industry: Let's get off this slippery slope of prenatal testing. Let's be mindful of the direction we are headed. Let's not pretend the testing is to have more "information" or to "prepare". If that were the case, I wouldn't be ranting right now. The abortion rate after a prenatal diagnosis of Down syndrome is staggering. 92% of babies who are prenatally diagnosed with Down syndrome are eliminated. That sentence alone says it all.
OK...rant is over.
On to something inspiring, amazing and beautiful. Thank goodness for that.
A link to a beautiful video:
A link to the beautiful new ministry launched this month:
Joaquin has his first official day of full inclusion preschool tomorrow morning at 8:30am and I'm a nervous wreck. We have been looking forward to this day since he turned 3 in February. This is what we have always wanted for him...to have the same preschool experience that any typical child would have. The same that his brothers had at this age. Joaquin is social, easy going, very flexible, enjoys learning and loves people so why am I nervous?
Well, I wasn't nervous until I went to the "meet the teacher" day on Tuesday. I was greeted warmly by the teachers and everyone was very excited to see Joaquin. The teachers (all 3 of them) said they have been looking forward to Joaquin attending the preschool. I picked up the preschool newsletter and the calendar of activities planned and made sure that Joaquin would be on the roster and we happily went home. I eagerly sat down to read through all the paperwork, so thrilled for Joaquin, and then it hit me. I read that one of the first activities next week is to bring in a photograph of your family to share with the class. Oh my gosh. How is Joaquin going to share with the class? He can't talk. It hit me. I mean sure, he can identify each of us in the photograph with prompting and I'm sure he will smile and point at his family members but that's about it. Typical three year olds talk. Some talk A LOT. But I'm certain every child in that room will be able to talk about their family. Joaquin won't. I get teary eyed just thinking about it.
I know I'm doing the right thing. I know Joaquin will learn best from his typical peers and he will learn best to TALK from his typical talkative peers. But it's still hard and it hits you.
Deep breaths as we cross this bridge into new territory. Typical peers. Peers where the difference in abilities will be VERY evident. Painful at times. But it's the best for Joaquin because this is REAL life. Not the safety bubble that special ed provides. Special Ed has a place and a time but I see now how easy it would be to crawl back to the safety net of it. BRAVE. Must be brave. Joaquin deserves this opportunity and I'm certain he will handle it WAY better than I will. Deep breaths.
Last week was Brady’s first week at his new school. When dropping him off, on the first day, I looked around and saw the excitement in the kids’ faces and some tears in the eyes of the moms and dads there for the initial drop off. I had a mix of emotions going on; a little sad because I was going to miss having Brady around all day, however; I was full of pride as well knowing that Brady was taking the next step on the adventure called life. Plus, I was a little envious that Brady’s school overlooks the Atlantic Ocean as well.
Now this week is already feeling completely different as Miss Carly is getting ready to head off to her first day of school and I am full of the first day jitters. I know that there is no doubt that I will cry on her first day, tears of sadness and tears of joy. Her first is truly her first day. While Emma (now in 4th grade) and Brady (starting 1st grade) are first day veterans, this is Carly’s first go around.
We have been so lucky to have Carly at home with us for just a little over a year now, prior to that she was in daycare, and the thought of her heading off to school is a little scary. I know that she will do well and will learn so much from just social interaction alone, however; that does not stop me from being a worried dad.
Who will hold her if she starts to cry?
Will they understand the different signs she uses to communicate? Not just ASL but her feet smacking the floor (when she either hungry or happy) and her own way of describing what goes on in her world.
Will her teachers be as excited as we are whenever she does her “first” anything?
Will she miss us as much as we will miss her?
Dang, it is tough being a parent sometime, but I have to admit that Miss Carly is growing up.
Carly has her first day of school next week and I am proud to say that I will be one of the parents there with tears in their eyes and joy in their hearts.