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In other column related news, “I Brake for Moms” has finally inspired a letter to the editor. Unless my reading comprehension skills are really lousy, I think I unintentionally offended the letter writer! For this, I am sincerely sorry.
The point of my ASD column a couple of weeks ago was to reiterate that there is no link whatsoever between Asperger’s Syndrome and violence. Also, we as a society need to start preparing for a future where 1 out of 88 adults have ASD and those people outlive their parents.
I have had people with ASD in my life for over twenty years. I was trained in the Llovas method and worked with two children doing ABA therapy. That was my first part-time job at Stanford.
Later on in my teaching career, I continued to work with children with ASD. I worked my butt off to help make sure their mainstream experience in my classroom was successful for everyone.
I still care about all of these children very dearly. I want to make sure that their futures are secure even when their mothers and fathers are no longer there to support them in financial or practical ways.
I wish that more people were talking about this.
My kids and I read a really interesting book from the library today by local author Robin Cruise. It’s called Bartleby Speaks, and includes lively illustrations by Kevin Hawkes. Anyone who has ever read The Einstein Syndrome: Bright Children Who Talk Late by Thomas Sowell, will immediately recognize the similarities.
I’m still not exactly sure how I feel about the plot line of the book. It’s about a little boy named Bartleby who doesn’t speak at all until his third birthday, and then utters a complete phrase. It is implied that Bartleby will turn out to be neuro typical, and that in fact, his brilliant and creative family was just too noisy to really every listen to him. Both the author and the illustrator mention in the dedication and bios that they too were late talkers who turned out just fine.
I know children like Bartleby; late talkers who turned to be neuro typical. I can understand how a book like Bartleby Speaks would be really comforting to their parents. Plus, the book is well written and engaging.
My problem is, that I am also the family member of people with Autism Spectrum Disorder. When I read this story to my daughter, I could almost feel the blood leave my stomach and go to my hand and feet. My body was physiologically going into a “fight or flight” response, because the thought of a two and a half year old not talking one single word makes me panic. It was a conditioned, involuntary response on my part, as someone who loves many people with Autism.
But I also sincerely believe that the author and illustrator had 100% pure intentions in writing this story. I don’t think they were trying to say that a real child who may or may not have ASD isn’t talking because their family is too noisy. I would have liked to see some sort of parents note linking up to Autism Speaks at the end of it, but I am still giving this book 4 stars.
The CDC has come out with new data today showing that the rate of Autism Spectrum Disorder is now 1 in every 88 American children. For boys, the numbers are even worse. The research that was collected from 14 different data gathering places in 2008, says that 1 in every 54 boys has Autism. That’s a 78% increase in Autism in just five years.
As a family member, former teacher, and friend to people with ASD, I am just crushed. I know I should count my blessings and be grateful that my own children do not have ASD, but I am heartsick for all of the parents who are not so lucky.
My blog is apolitical by nature, and I’m not trying to change that, but what the heck? 1 out of every 88 Americans born today will have to struggle to learn how to do the simplest of things, like ask their mommy for a cup of apple juice, and that doesn’t concern the powers that be? You would think that this huge increase in Autism would be at the forefront of national security.
Who is going to take care of these children in the future? Who is going to pay for these children now? How are families going to manage? How are school districts going to manage? What happens if the problem gets worse? Why isn’t this front page news, every single freaking day?
What if these kids are the proverbial “canary in the coal mines” giving us a clue that something is terribly wrong with our environment, or our DNA, or (my MIL would say) our medical practices? When I think of my own experience of all of a sudden developing severe gluten intolerance in my 30s, I get even more freaked out. Is there something in our food supply? Was there something in our food supply when my mother was pregnant with me, or when my grandmother was pregnant with my mother?
My husband calls Autism “the black hole of conversation” in our family, because we can all talk about it for so long; spinning our wheels and getting more and more upset. So instead of doing that, I’m going to be proactive. I’m hunting down a blue light bulb so I can participate in Autism Speak’s Light It Up Blue day of advocacy on Monday April 2. I’m also going to open my wallet and make a donation in honor of my mom’s birthday. I wish I could do more.
My son Bruce has been taking swimming lessons these past couple of months, and while Jenna and I splash around in the “leisure pool”, and I try to get a bona fide workout in three feet of water, I have been people-watching. Two mothers in particular have really stood out to me.
One mother is bald and often wears a pink ribbon track suit. Sometimes her husband comes with her, and they sit together on the bleachers and watch their children swim. I’m sure that every other adult in the pavilion had noticed this mom, and probably sent up a private prayer for her. It is readily apparent that she deserves understanding and empathy because she is fighting for her life.
The other mother I have noticed also deserves compassion, but I think I’m probably the only person there who realizes this. Her fifth grader appears to be a total brat. The swimming teachers are really frustrated with this child, and he doesn’t have any friends. Sometimes he won’t even get in the water. When he does get in the water, he plays with the water in a really odd way. Instead of sitting on the bleachers chatting with the other parents or reading a magazine, this boy’s mom sits by herself, tensed up. At times, she has even come in her swimsuit, in case she needs to get in the water with her son if he causes problems. This mom might be worried that the other parents present think she is unfriendly and a bad parent. Probably a lot of the other moms are in fact thinking this. I however, am not. I’m not a Psychologist, but I’m pretty darn sure her son has some form of Autism Spectrum Disorder. The thing is, he is high functioning enough to seem “normal” to people who are unfamiliar with the many nuances of what ASD can look like. The other adults probably just think this kid is a jerk.
I wonder if the mom with breast cancer and the mom of the child with ASD have ever noticed each other, and if so, what they think of the other person’s circumstances. The mother who is bald might not ever have the chance to see her children grow up, but at least she knows that her children are neurotypical, and will be able to follow an ordinary path in life. The mother of the child with ASD might be with her son every day for the next forty years. She will have to forge ahead, and clear a path for her child through schools, swimming lessons, and ordinary living. But she will see her son grow up.
I wish there was some way I could help both of these mothers, beyond praying for them. I wish there was a way that I could tell both of them that I am noticing them, and I think they are both really brave. I wish I could give them both a shot in the arm of love.
If you need Christmas gift ideas for a family with a child who has Asperger’s Syndrome or High-Functioning Autism, I am Utterly Unique by Elaine Marie Larson could be a good choice. It is an ABC book with a very positive spin about the attributes and abilities of high functioning ASD children. It includes everything from being detailed oriented to having “precise pronunciation”.
This is also a good book for families with children of all ability levels to read, in order to promote understanding and empathy for the ASD people who are, or will someday be, in our lives. Our local library happened to have it on the features shelf this past week, and I was very happy to check it out.
My regular readers already know this, but we have a very strong family history of Autism Spectrum Disorder. Thankfully, neither Bruce nor Jenna has ASD, but that doesn’t stop me from constantly thinking about the families I know who are dealing with Autism in its many forms. My husband calls Autism “the black hole of conversation”, because every single person in our extended family can perseverate on the topic for hours.
When Bruce and Jenna were little, we started them on Baby Signs at 9 months, in the hopes of hard-wiring language into their brains at an early age. By 12 months, each of them knew about 2 dozen signs, and was beginning to talk. I don’t know if this helped or not.
The other unusual thing we did, and again, I don’t know if this helped either, was to keep them on a Gluten Free Cassin Free diet until they were one year old. My MIL and mother both thought we were nuts, but I didn’t care. My rationale was that if there was a higher percentage that our children would develop Autism, then I wanted to make sure they were on the so-called Autism diet while their language was still developing, on the off chance that it would help.
Fast forward to now. I don’t have Autism, but in the past ten days have realized that I myself am extremely gluten sensitive. To make a long story short, I’ve been in and out of the doctor’s office about a million times this past year, trying to figure out what was wrong with my health. Finally, I got the big referral to the GI doctor to see about “scoping me” from one end or the other to see whether or not I had IBS. In the meantime, I’ve been keeping a careful food journal; exercising, taking probiotics… you name it.
A friend of mine who has Crohn’s disease suggested I try going gluten free. I started a GF diet the day before Thanksgiving. Within two days I was radically better, and almost pain free. Now it’s been about ten days, and the farther away the gluten gets from my diet the better I am feeling. I’ve been back to the doctor and tested for Celiac disease, which has come back as negative. But that doesn’t counter the fact that as soon as I stopped eating gluten, my health improved.
All this leaves me thinking, What the heck??? How did I develop gluten sensitivity as an adult? I’m uber-careful organic girl. It’s not like I’ve been eating GMO Wonder Bread and Twinkies. What has caused this?
And think about this… if gluten could make such a dramatic difference in me in just a few days, than think about the Autism diet. No wonder people report it making a big difference.
You know, if I had a toddler right now who wasn’t talking or who had delayed language, I’d go GFCF in a heartbeat. In fact, I don’t think I would introduce gluten or casein in a child’s diet until they were stringing a couple of words together, just as a precaution. It means eating a lot of veggies, chicken, rice, pears, and quinoa, but it is doable and can be healthful too. Full disclaimer though, I’m not a doctor or nutritionist. I’m just a major worry-wart!
Jenna is not quite 2 and a half yet, and is definitely keeping busy. Here are some of the learning milestones she has reached so far:
- For the most part, she knows all of her uppercase letters and sounds. She knows most of her lower case letters too.
- Just in the past month, she has learned most of her colors.
- She can count from 1-13 without correspondence, and then keep counting up to 20 with varying irregularity.
- She can count to three with correspondence.
- Jenna is highly verbal. Yesterday she asked me: “Mommy can I hold your special earrings? I’ll be extra gentle.” She says complicated sentences like these all the time.
- She also exhibits a burgeoning sense of humor and a big imagination. Yesterday she told me we couldn’t go to the library because there was a tiger there eating all of the fish. (There is an aquarium in the children’s section.)
- Jenna is very clearly left-handed, and this can be seen when she paints, plays with play-dough, eats, or colors.
- She also sits in a chair, uses a cup, is off the bottle/sippy cup/pacifier etc., is potty trained (for the most part), and can put some articles of clothing on including pants, socks, shoes, and sometimes dresses.
Here are some of the things Jenna is still working on:
- A-B-A-B patterns. We’ve played with these a lot but she still needs a lot of assistance to complete a simple pattern.
- Puzzles. Jenna can figure out which piece goes where, but she can’t quite fit the pieces together herself.
- Taking naps. (sigh!)
- Blending sounds together, and sounding out vowel-consonant-vowel words. She just can’t do that yet, so I don’t push it. Every once in a while I check again to see if she’s ready.
- Getting dressed all by herself without any help from me.
- Wearing hair-bows.
Every child is different and learns at a different rate. I’ve mainly written this all out for those of you who are curious about what other kids can do at this age. Probably your own child will be able to do some things that are more advanced than Jenna at this age, and some things that are less so.
However, it’s never a bad idea to check in once in a while with the developmental milestones children should be hitting to make sure that they do not have Autism Spectrum Disorder.
(I chose this picture of a stack of train tracks that Jenna(26m) built yesterday. Jenna does not have Autism Spectrum Disorder, she just comes from a long line of engineers! 🙂 But sometimes, unusual toy play such as lining up toys, using them inappropriately, or lack of imaginary play can be indicators that a child might not be developing normally.)
Is my two year old normal? That is certainly a question most parents ask themselves at one time or another. I’m not talking about; is my child extra smart?, or is my child eating enough?, but the very basic, core wish of every parent out there, is my child okay? In our family, this has always been an extra sensitive question because we have strong family history of Autism. That was one of the primary reasons we spaced our children four years apart, to make sure Bruce was “in the clear” so to say, before we had Jenna.
As it turns out, Autism is not something we have to worry about for either of our children. Before we breathed this gigantic sigh of relief however, I practically memorized the First Signs.org website for appropriate developmental milestones, as well as their red flags page. If you have young children, I highly recommend taking a look at this important information. With Autism, early intervention is critical.
In addition to our family history of Autism, I had experience doing ABA therapy with two little boys in college, as well teaching children with Asperger’s syndrome who were mainstreamed in my classroom. So if you would ever like to pick my brain on Autism related issues, please feel to contact me by email and I’ll see if I can be any help.