I've talked about autism and the gut before; about how there is a high number of individuals with autism who have gastrointestinal troubles. I talked about trying the gluten free diet for our son with autism, and how we noticed a big difference in his behaviour, so he's going on 7 years with the diet. One thing I haven't talked about is his nutrition. Just what he eats. When we put Caleb onto the gluten free (and at the time, also a casien free) diet, he was only 3, and ate a lot of what he was given. Fruits and veggies, meats, nuts and seeds, rice and quinoa, a really good variety. The only things he didn't really like were casseroles; I think the food being all together in one dish was alarming to him (...my husband feels the same way!). Then, somewhere between that point and about a year ago, Caleb had whittled away at his food list until there was only a handful of things he would eat. Apples. Romaine with italian dressing. French fries. Yogurt. Toast. Cereal. Gluten-free pretzels. Popcorn. And sweets. It was very difficult for many reasons: one, I had become that Mom who was making a separate meal for my picky child. Caleb's aversion to food seemed like more than just a 'picky' child. He would literally gag, and cry, and often, eventually, would have a serious, screaming, kicking, full on melt-down. Those dinner time meltdowns would often leave his sisters crying, and I would have no appetite. Secondly, it made being invited anywhere difficult. We were always having to pack him a bunch of things, even if the people we were going to made a point of having a gluten free meal. If it wasn't from his tiny little list, he wasn't going to eat it. We felt like we were being rude; they went out of their way to prepare something he could eat, but we let him 'get away' with eating what he wanted. We weren't going to let him gag and throw a fit at someone else's house though, that's for sure! Lastly, his nutrition worried me a lot. He was (and is) taking a multi-vitamin everyday, for a while he was taking a child's omega capsule every day, but I knew that the best way to get all the vitamins and minerals you need is through food. Real food. I needed a plan...but where do you start with a kid who is actually about to barf when certain things touch his tongue? I tried bribery. Judge if you want to, but I am not above bribery to get something out of my kids! We started the "if you eat this (fill-in-the-blank-dinner item), you can have this (fill-in-the-blank-treat). You know a kid really, really doesn't like something where even that doesn't always work! It worked for some things though, like pasta with sauce (well, first pasta with parmesan, then we upped it to sauce). Sometimes it would take him an hour to get through a small bowl of noodles, and his treat would have to be where he could see it so we could keep reminding him with the visual cue. Sometimes this back-fired though, and he couldn't (wouldn't) eat something, then he was very upset about not getting the treat. Not fun. Then, something crazy happened.....dear, sweet Caleb loves Pickle Fries from Fast Eddies, but because we live far away from the world of Fast Eddies (it's mostly a south western Ontario thing), I thought I would buy that completely un-healthy, MSG laden popcorn seasoning in dill flavour. It is literally the same stuff Fast Eddies puts on their fries! Even though he likes popcorn, I started putting it on the kids popcorn once in a while as a treat. This was just last summer, and we were having corn on the cob a lot, which Caleb (c'mon, guess...) hated! Then I thought back to all those 'fancy' corn on the cob recipes with spices, and different things, and offered Caleb corn on the cob-with dill pickle popcorn seasoning (I know, yuk!). But, he ate it! He sniffed it, licked it, then finally took a bite! I knew how bad that popcorn seasoning was, but I really didn't care! He was eating a 'new' food! So, during last summer, we added dill pickle popcorn seasoning to a ridiculous amount of food! BBQ chicken, hardboiled eggs, steak....literally most meats we ate! We tried some more veggies, but he was still not biting (pun intended). He did start eating potatoes though (I know fries are potatoes, but deep fried, fast food fries are really not an ideal veggie option!) We were o.k. with that, we wanted him to start eating more proteins, and he was. We slowly got him 'off the seasoning' by using less and less of it, and finally by just putting the food on his plate with no seasoning, and telling him it was all gone (which it was, thank the Lord!), and we would offer him salt, which he would use. What's my point...? My point is this, if you are concerned about the things your child eats (or doesn't eat), pick one thing, and work there first. Don't make family meal time a battle either. I'm not a fan of the never ending parental fighting and "you eat this bite, or else...". Learn what your child likes, and start there. Add to it, use it to your advantage. For instance, Caleb now likes pasta with meat in his sauce. We got him to that point by really cooking it up so teeny-tiny he didn't know it was there at all, and eventually he grew to like the taste and texture, and now lets me cook it normally. Heck, he even requested meatballs! I also started hiding veggies in the sauce (and in other foods). Steam some carrots, or cauliflower, or bake some squash, puree it, and add it to your pasta sauce. Is it sneaky? Yes! Is he eating more veggies? Yes. Will I hide veggies in his food forever? Nope. But for now, it is getting him some extra vitamins and minerals, and keeping family supper time scream free! I have to remember that not too long ago he wouldn't eat noodles, or sauce, or meat at all! After the dill seasoning was gone, Caleb's tolerance of eggs faltered, and he wouldn't eat them for a long time. What turned him around was us having chickens! He was fascinated/amazed by the fact that we had chickens who laid us eggs, which we got to eat! I'm not telling you to buy a chicken so your picky eater will eat eggs, but a lot of kids are interested in where food comes from. So, grow some veggies, go to a farm, find a YouTube video, just make food interesting, not a fight! Another thing to consider/remember is to give your child a fair shot at pleasing you and eating better. My middle child is a mousey little eater. So, would it be fair for us to load up her plate, then force her to stay at the table until she finished all her food? I don't believe it is. We put food on her plate, knowing it is a reasonable amount for her, giving her the chance to succeed! It makes meals pretty enjoyable! And when all attempts are failing? Make your kids a milkshake! No, not a real milkshake with loads of ice cream, but a smoothie "milkshake". Lots of people are making green smoothies these days. Not all kids will find green smoothies appetizing though....so, I simply added some cocoa powder! Suddenly my kids all wanted a "milkshake": kale and spinach, ground flax seed, avocado, a banana and either pineapple or mango, maybe some kiwi, throw in some berries, then a few tablespoons of cocoa powder (don't forget liquid: milk, almond milk, coconut water, or regular water. You could use juice too, but make sure it's real juice, not loaded with sugar juice!), and suddenly it's chocolate! Sort of! At first I hid the fact that I was cramming their "milkshake" with healthy things, but I gradually let them start helping me so that they now realize that healthy can also be super-duper yummy! Special needs or not, children need to be well fuelled for their life! Geepers, they are so full of energy, and sillies, and they need good food in their tanks! But, another important thing is that these kids will eventually be adults who need to think for themselves, and make food choices on their own. If Caleb grows up still hating all fruits and veggies besides apples and romaine, but I know he can put a blender-full of goodness together that he will enjoy, I will be happy with that! It's about patterns, about teaching, about not making food a war, and about trying our best to give our children the best, so that they can be their best.
Does Caleb still eat fries, and sweets, and not so good food? Sure he does. But through years of trial and error, being patient and trying tricks, we are now making normal (for us) family meals that we will all eat. No bribery needed.
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De-institutionalization, Ontario’s policy of closing residential institutions for people with developmental disabilities and moving them into the community, dates back to the 1970s. The last of those large institutions, Huronia Regional Centre in Orillia, closed in 2009 (The institution opened its doors in 1876 under the name "Orillia Asylum for Idiots"). In the mid 19th century, the first permanent “lunatic asylums” were established in Newfoundland, Prince Edward Island, Nova Scotia, New Brunswick, Quebec and Ontario. By the turn of the 20th century, western Canada had also erected asylums. These institutions reflected a revolutionary form of health care for those considered “insane”. Run by asylum doctors and attendants (later psychiatric nurses), asylums were part of the same reform movement that led to more permanent schooling for children, reorganized prisons for criminals, and reformatories for wayward youth. Institutions were seen as the ‘best’ place for people with intellectual disabilities to be, segregated from society, with others "like them". Reformers and psychiatrists believed that carefully constructed and run lunatic asylums could dramatically increase the cure rates for many forms of madness. The plan was that different types of mental illness would be more carefully classified, a strict daily routine of work, leisure activities and religious observation was established, medication was routinely prescribed, and patients’ progress was carefully recorded. Experts hoped that in removing patients from their home environments where the mental trouble usually began, they would quickly be cured in this carefully controlled asylum environment. Patients, it was hoped, would be cured by slowly reforming their behavior in conformity with the rational principles of asylum care. In some provinces, private asylums were also established to cater to wealthier families. So, why then did Ontario decide to start "de-institutionalize"? In the late 1970s and 1980s, governments in the Western world were being challenged by the disability rights movement to close institutions, large facilities, and psychiatric hospitals. This desire for social change was being fuelled by a human rights revolution and by a growing body of research that was showing that 'institutionalization' had negative impacts on both consumers and staff. Word about what was really happening behind the doors of these "homes" where children and adults with special needs were to be cared for was appalling and unjust. The Ontario government has settled multi-million-dollar class-action lawsuits (read about them here, and here) with several thousand former institution residents who suffered physical, emotional and sexual abuse at the hands of former staff and fellow residents. Group homes were being replaced by institutions, as it was starting to become clear that when the "idiots" are tucked away in an institution where there are many secrets and not much accountability, anything can happen. Being in a smaller home with fewer people, and being allowed to be part of society was what would be best for those with developmental disabilities. So, let's fast-toward to this past Tuesday (May 20th) to a comment made by Toronto Councillor, Doug Ford, about how a Rexdale group home for young adults with autism and other developmental disabilities was damaging property values and "ruining" the neighbourhood. Did you feel he earth shift too with the time travel back to 1876? I know, so weird. It was only 5 years ago that the last institution was closed, and basically, what Doug Ford is saying is that he would like them to come back! Because if these people in the group home are "ruining" the neighbourhood, and "damaging property values", then where would they not do that? Oh, I know, an institution! Wait....isn't this where this all started? His comments were ignorant. As a mom of a child with autism, my sons future is very un-certain. I think he is smart, and bright, and capable, but I can't really know that he can get a job, or live on his own, or care for himself when he is older.
Since the institutions have closed, there has been a big (a BIG!) gap in funding and spaces where families can send their special-needs family members if they are no longer able to care for them, or when care seems impossible, such as with the couple who left their adult son with autism at a government office in Ottawa, or the Ottawa mother in crisis who threatened to abandon her 20-year-old daughter with autism at Queen’s Park in Toronto on Tuesday. It may seem so unkind, and so crazy that parents would do such things to their children, but living with someone with special needs can push you to your limits, and without proper support (from family, friends, school, the community), parents or caregivers can snap. I know we've come a long way, and I pray that when (or if) I need services for Caleb as he gets older, they will be more readily available. I love Caleb with all my heart, and I don't think he is "ruining" our neighbourhood, or "damaging our property value", and I don't want him shipped off to an institution where he is just another person in a sea of "idiot" people. For now, and as long as I am able, his home is with me. Today I wanted to give you a look just at Caleb as a person, with his autism tied up into it of course, but just as himself. Just me asking him some questions, and him answering me. Some of the questions I did have to repeat, and I had to give him "the look" to make him focus and answer sometimes, but I think you'll enjoy this look at Caleb, by way of an interview. An Interview with Caleb I taped it, and wrote out what he said. I wanted to post the video, but he tends to mumble, and he was also eating a big bowl of popcorn while I interviewed him, so, it wasn't ideal (aka-anyone who isn't used to him wouldn't be sure what he was saying!). He honestly says some hilarious and abstract things. My questions are in pink, and his answers are in quotation marks. What is your favourite food? "Um.....um......Caleb likes apples, and oranges and pineapples" Why do you like fruit? "Is fruit" No, I said why do you like fruit? Because it's crunchy, or sweet... "Is sports candy" Are you just saying fruit as your answer because you can see them right now? "um......um.....I don't know" Do you like any other food? "Um....um.....um.....Caleb likes tater tots. Tater tots from Luke and Kelly's. Tater tots taste like factory". What do you like to use for dipping sauce for tater tots? "Um.....hmmmmm......Caleb likes mustard. Mustard tastes like sunshine" What are your favourite french fries? "Fast Eddies pickle fries are so salty in my happy belly!!!" What is your favourite movie? "Toy Story 2. Toy Story 2 and Buzz Lightyear new utility belt" What is your favourite t.v. show? "Blue's Clues" Why? "Um....Blues Clues...." What is your favourite colour? "Red is like music" What is your favourite subject at school? "um....St Carthagh's..." No, not what school do you go to, what is the best part of school? Math, reading, French, gym-? (interrupts me)- "French!" Why French? "Msr. Francoer is so very silly and free time video games!" Do you like speaking French? "No" Oh, do you like French at all besides free time? "Um......um......um......Yes" Why? "Caleb loves to sing with French" What is your favourite animal? "Black swans. Black swans are like a duck. Black swans are at Peterborough zoo with cousin Tarah" (side note: cousin Tarah lives in Peterborough, and Caleb remembers that from when we last saw her there at least 4 summers ago). Then the phone rang, and we were done. I actually let Caleb answer. He currently has almost no phone skills, so, he mumbled, rambled on for a bit about Buzz Lightyear, and eventually handed me the phone, and I was pleased to hear it was a telemarketer. A persistent one too, he didn't hang up during the conversation with Caleb! He did say my last name wrong though. :)
Anyway, I hope you enjoyed this interview with Caleb. I love some of his answers (like "Red is like music"-so cool). He is honestly such a funny guy. He loves to laugh and be silly, he loves to sing and dance (well, stomp), and he loves animals, well, except small dogs. But that's legit, those little yappers are so darned noisy! He also likes to find creepy crawlers, except dragonflies and butterflies, which Caleb has always run away from screaming! Turns out his fears were well founded about the butterflies though. We just found out a few weeks ago that butterflies will eat rotting flesh! What?!? Disgusting! Good on ya Caleb, you knew they had a dark side! If you Google "autism and divorce rates", the number looking back at you is staggering. According to most articles you read, 80% of couples who have a child with autism get divorced. That is an alarmingly high number, almost a hopeless number. There's still that 20% of couples who stay together, but it's still not that encouraging. Why would numbers be so high? The thought is that between the regular stress of a marriage, then the extra financial costs of a child with special needs, conflicting parenting styles that get magnified when both parents feel the extreme need to be an advocate for their child, potential blaming, plus the fear and weariness of a diagnosis, that 80% number seemed fair, and no exhausted parent of a special needs child ever challenged it. The Centre for Autism and Related Disorders at the Kennedy Krieger Institute recently had a press release regarding the divorce rate among couples with an autistic child. What they found was almost more interesting than the 80% statistic most people were talking about. They found that number to be completely false, and that "a child's autism has no effect on the family structure". Brian Freedman, Ph.D., lead author of the study and his team point out several critical points:
Having determination can go a long way when it comes to staying together or not. If you don't want to be that false statistic of 80%, then don't be! If you see that the relationship is struggling for whatever reason, be it directly because of a child with special needs, or any other marital stressor, fix it now! Don't wait until it's out of control. It may seem like I am just saying this from some pedestal of a perfect marriage, but that is not the case at all! Today is my 10 year wedding anniversary! I cannot say that any part of this past 10 years has been easy. But I can say it was worth it. To give you the quick version of the last 10 years, we got married when I was 7 months pregnant, then that child was diagnosed with autism, we've had (many) job losses and being completely broke, no vehicle (or vehicles that only functioned partially-like a stick shift VW that had no reverse, then slowly started loosing other gears!), moving 9 times, having another child with physical challenges, having 2 late term miscarriages, a fire, and that's not even all of it! There have been many, many times where this has almost fallen apart. All I can genuinely say is that it is only by God's grace that my husband and I are still together. I am not being overly dramatic, I mean that with all my heart. The worst things that have happened in our marriage I didn't even mention, but believe me when I say they were breaking us. But I believe that "what God has joined together, let no man separate" (Mark 10:9). Something has happened to me in 10 years, besides getting older. I look back and think, "um......how did we get through all of that?", but then I also look at the road ahead, and know that no matter what, God is in control. I look at who I am now compared to who I was 10 years ago, and I thank God I am not the same person. I have hit rock bottom many, many times, but lucky for me in God's economy, down is up. To my husband of 10 years: You amaze me with your faith in me. I have betrayed you many times, but you choose to remain with me, joined to me. I feel like we're in a race, and this last stretch has been even more uphill than we anticipated, but I have genuine faith we will continue to run this race with determination to finish as winners together.
I am a better person now because of you, but mostly because of God working through me and you to keep us changing and growing together. I love you, and here's to another 10 (plus) years. xoxo When you have a child with autism, "progress" can look a lot different than parenting a "normal" child. Caleb had some regular milestones like sitting up, learning to crawl, and learning to walk. But when he started falling behind in other areas, progress, as we thought it would come, started to look very different. Our victories with Caleb would probably go un-noticed by many other people. He's 5 years old and finally looks at you when you call his name? Best day ever! 6 years old and finally pointed at something?....who cares? We did! He hadn't used a gesture properly yet in his life (think waving "hello" and "goodbye", putting arms out to be held, etc.). Being 7 years old and really starting to make eye-contact regularly? Amazing! How about the last few birthday parties we went to where Caleb wasn't overwhelmed and acting so poorly we had to coral him in a quiet bedroom somewhere? In fact, at his last birthday party, when we were leaving and prompting Caleb to say, "Thank-you, good-bye" to which he would normally echo exactly, or say "good-bye poo poo!" (he's not trying to be rude, he thinks it's funny, and I think it helps him with the awkwardness of goodbyes), he completely surprised us by saying, "Thank-you for the party!". I almost fell over! He thought of, and delivered, an appropriate response to the situation we were in! If other parents had still been around (besides the ones he was talking to who know him), they would have thought we were being a little dramatic over a simple phrase from a kid who looks old enough to know what to say. I cleaned out our filing folder the other day, and was looking over some records we have from Caleb's many years of therapies. In one report from when Caleb was 3 years old, the doctor said, "He struggles with following directions of others, understanding safety, attention and focus to task as well as directing impulse behaviour." When I look at Caleb now as a 9 year old, I can see the many (many!) improvements he has made in all of these areas. Another report from when he was 5 years old and talking about a test to determine his intellectual aptitude says, "At this time Caleb was unable to complete the various test demands required for this individually administered cognitive test. As a result the examiner could not obtain an estimate of Caleb's intellectual capacity. Caleb was not able to verbalize as he has no real speech or language skills or could could he gesture to a response and appeared confused with the instructions of the cognitive test. As a result, Caleb was attestable at the time of the assessment and the cognitive portion of the testing procedures was discontinued". Compare that to a test he was asked to do by a therapist who came to see him at school a while back. The test was meant to be done over three 20 minute periods (at 3 different visits), and involved following many steps and tasks (writing, following directions, answering questions orally, etc.) . In a meeting afterward she told us that Caleb was so willing, and was doing so well she just kept going, and he finished all three tests in one chunk & in under an hour. Her only concern when all was said and done was that he held his pencil incorrectly, and wrote his words too far apart on a line. That was it (hazaa!)!! I guess any parent would be so proud of a kid who demolished a test like that, but I felt so gratified knowing that he wasn't fitting into the tiny little mould doctors and therapists had put him in when he was younger. Caleb is always holding lessons for me, sometimes obvious, sometimes not. I am at a stage in my life where I am looking at who I've been, and what people think of me, and trying to break that mould for the better. If you've been an angry person, and that's how people see you, why not change it? If people see you as overbearing, change it. You interrupt a lot? Stop it!! Do you tell lies big and small without a second thought? Become an honest person! How about "not able to verbalize as he has no real speech or language skills...and appeared confused with the instructions of the cognitive test. As a result...the cognitive portion of the testing procedures was discontinued"....?
Blow them away. For this final Thursday in Autism Awareness Month, I wanted to honour Caleb. We have had many hard years with him, but the truth is that he is the most genuine person you will ever meet, and has the most contagious laugh and beautiful smile. The song playing with the video is called "Meant to Be" and is from the Veggie Tales movie "It's a Meaningful Life". It is written and sung by Steven Curtis Chapman. This song has been "our song" for Caleb since we first heard it on the movie (mentioned above), as we feel it sums up not only how we feel about Caleb, but more importantly, how God feels about Caleb. Chorus You were meant to be touching The lives that you touch And meant to be here Making this world so much more Than it would be without you in it You were meant to be bringing The gifts that you bring And singing the songs You've been given to sing You are perfectly, wonderfully, Beautifully meant to be You were meant to be xoxo Love you Caleb
I struggled with this post because I felt like it was a cop-out somehow, but I've reconciled myself to it, and am sure that a big part of people becoming familiar with autism is by watching it. They say knowledge is power, and I really believe power from this knowledge will change the way people see autism. Today I have a few video trailers from films that really touched me, taught me, and challenged me and how I saw autism in my son, and in others. I hope you take the time to watch the trailers, but more than that, I hope you write yourself a little note to remember to actually watch these in full. Autism: The Musical This HBO documentary "Autism: The Musical", and documents children with different levels of autism coming together to celebrate their differences, and their unique talents. Temple Grandin Another HBO film titled "Temple Grandin" (based on the book "Thinking in Pictures: My Life With Autism" by Temple Grandin) is such a wonderful movie. Claire Danes, who plays Temple, did so much research into how Temple talked, her mannerisms, and what made her who she was. A wonderful film that you will want to watch, and tell other to watch too! The book is also amazing, and worth reading. The Horse Boy This last film, a documentary called "The Horse Boy", may seem strange. This family travels across the world to visit Shaman (a Shaman is a person thought to have access to, and influence in the world of the supernatural) in an attempt to help their autistic son. What I love about this is watching a family come together, working together, learning from each other, and coming out better for it. This movie also touches me because I see in their son a lot of what my Caleb used to be like a few years ago; they share a lot of the same problems and mannerisms, and it breaks my heart to see their son struggle. The book "The Horse Boy: A Father's Quest to Heal his Son" by Rubert Isaacson is a great read, and gives a lot more details than the documentary. The truth about me watching movies and documentaries (and reading books) about autism is that I need a reminder, I need empathy, I need to see autism in more ways, but I especially need to see it from my sons eyes.
It can be easy for me to get into "the groove" of dealing with Caleb, and I forget to stop and see how beautiful he is, how amazing he is, how far he's come. I get frustrated with his limitations, and see what he does wrong through the lens of my "normal" brain, not his autistic brain. Caleb struggles, but he also fights everyday to overcome the things that could (should) hold him down. I don't give him the credit he deserves for what he has to do every day to function and survive. Watching others (especially kids) with autism gives me a new, outside-looking-in view of Caleb, and my life with him. I watch a movie or documentary, or read a book, and see Caleb in it. It reminds me to be patient, to show grace, to love the things that make him who he is, and see how strong he is. When I see autism that way, it inspires me to be better for Caleb, the way Caleb works everyday to be better for me. It seemed fitting that for Autism Awareness Month, I introduce you to the first person ever diagnosed with autism. This is not my story, but one from The Atlantic, and was published in August of 2010. I have only included parts about "Autism's First Child", Donald, but the whole article gives a bigger picture of autism in general, and autism in adulthood (something rarely talked about or looked at). I haven't changed the wording at all, the only thing I have done here is to condense the story. The full story can be read here. Meet Donald Gray Triplett, of Forest, Mississippi. He was the first person ever diagnosed with autism. In 1951, A Hungarian-born psychologist, mind reader, and hypnotist named Franz Polgar was booked for a single night’s performance in a town called Forest, Mississippi. Polgar was lodged at the home of one of Forest’s wealthiest and best-educated couples, who treated the esteemed mentalist as their personal guest. Polgar’s all-knowing, all-seeing act had been mesmerizing audiences in American towns large and small for several years. But that night it was his turn to be dazzled, when he met the couple’s older son, Donald, who was then 18. Oddly distant, uninterested in conversation, and awkward in his movements, Donald nevertheless possessed a few advanced faculties of his own, including a flawless ability to name musical notes as they were played on a piano and a genius for multiplying numbers in his head. Polgar tossed out “87 times 23,” and Donald, with his eyes closed and not a hint of hesitation, correctly answered “2,001.” Indeed, Donald was something of a local legend. Even people in neighboring towns had heard of the Forest teenager who’d calculated the number of bricks in the facade of the high school—the very building in which Polgar would be performing—merely by glancing at it. According to family lore, Polgar put on his show and then, after taking his final bows, approached his hosts with a proposal: that they let him bring Donald with him on the road, as part of his act. The offer was politely, but firmly declined. What the all-knowing mentalist didn’t know, however, was that Donald, the boy who missed the chance to share his limelight, already owned a place in history. His unusual gifts and deficits had been noted outside Mississippi, and an account of them had been published—one that was destined to be translated and reprinted all over the world, making his name far better-known, in time, than Polgar’s His first name, anyway. Donald was the first child ever diagnosed with autism. Identified in the annals of autism as “Case 1 … Donald T,” he is the initial subject described in a 1943 medical article that announced the discovery of a condition unlike “anything reported so far,” the complex neurological ailment now most often called an autism spectrum disorder, or ASD. At the time, the condition was considered exceedingly rare, limited to Donald and 10 other children—Cases 2 through 11—also cited in that first article. His full name is Donald Gray Triplett. He’s 77 years old. And he’s still in Forest, Mississippi. Donald was institutionalized when he was only 3 years old. Records in the archives at Johns Hopkins quote the family doctor in Mississippi suggesting that the Tripletts had “overstimulated the child.” Donald’s refusal as a toddler to feed himself, combined with other problem behaviors his parents could not handle, prompted the doctor’s recommendation for “a change of environment.” In August 1937, Donald entered a state-run facility 50 miles from his home, in a town then actually called Sanatorium, Mississippi. The place wasn’t designed or operated with a child like Donald in mind, and according to a medical evaluator, his response upon arrival was dramatic: he “faded away physically.” At the time, institutionalization was the default option for severe mental illness, which even his mother believed was at the root of Donald’s behavior: she described him in one despairing letter as her “hopelessly insane child.” Being in an institution, however, didn’t help. “It seems,” his Johns Hopkins evaluator later wrote, “he had there his worst phase.” With parental visits limited to twice a month, his predisposition to avoid contact with people broadened to everything else—toys, food, music, movement—to the point where daily he “sat motionless, paying no attention to anything.” He had not been diagnosed correctly, of course, because the correct diagnosis did not yet exist. Very likely he was not alone in that sense, and there were other children with autism, in other wards in other states, similarly misdiagnosed—perhaps as “feeble-minded,” in the medical parlance of the day, or more likely, because of the strong but isolated intelligence skills many could demonstrate, as having schizophrenia. Donald’s parents came for him in August of 1938. By then, at the end of a year of institutionalization, Donald was eating again, and his health had returned. Though he now “played among the other children,” his observers noted, he did so “without taking part in their occupations.” The facility’s director nonetheless told Donald’s parents that the boy was “getting along nicely,” and tried to talk them out of removing their son. He actually requested that they “let him alone.” But they held their ground, and took Donald home with them. Later, when they asked the director to provide them with a written assessment of Donald’s time there, he could scarcely be bothered. His remarks on Donald’s full year under his care covered less than half a page. The boy’s problem, he concluded, was probably “some glandular disease.” Donald, about to turn 5 years old, was back where he had started. Most likely Donald's name would never have entered the medical literature had his parents not had both the ambition to seek out the best help for him, and the resources to pay for it. Mary Triplett had been born into the McCravey family, financiers who had founded and still controlled the Bank of Forest. She married the former mayor’s son, an attorney named Oliver Triplett Jr. With a degree from Yale Law School and a private practice located directly opposite the county courthouse. Their first son, Donald, was born in September 1933. A brother came along nearly five years later, while Donald was in Sanatorium. Also named Oliver, the baby stayed behind with his grandparents in Forest when, in October 1938, the rest of the family boarded a Pullman car in Meridian, Mississippi, headed for Baltimore. Donald’s parents had secured him a consultation with the nation’s top child psychiatrist at the time, a Johns Hopkins professor named Dr. Leo Kanner. Kanner (pronounced “Connor”) had written the book, literally, on child psychiatry. Aptly titled Child Psychiatry, this definitive 1935 work immediately became the standard medical-school text, and was reprinted through 1972. Kanner would always seem slightly perplexed by the intensity of the letter he had received from Donald’s father in advance of their meeting. Before departing Mississippi, Oliver had retreated to his law office and dictated a detailed medical and psychological history covering the first five years of his elder son’s life. Typed up by his secretary and sent ahead to Kanner, it came to 33 pages. Many times over the years, Kanner would refer to the letter’s “obsessive detail.” Excerpts from Oliver’s letter—the outpourings of a layman, but also a parent—now hold a unique place in the canon of autism studies. Cited for decades and translated into several languages, Oliver’s observations were the first detailed listing of symptoms that are now instantly recognizable to anyone who knows autism. It is not too much to say that the agreed-upon diagnosis of autism—the one being applied today to define an epidemic—was modeled, at least in part, on Donald’s symptoms as described by his father. The surviving medical records of that initial visit contain a notation preceded by a question mark: schizophrenia. It was one of the few diagnoses that came even close to making sense, because it was clear that Donald was essentially an intelligent child, as a person exhibiting schizophrenia might easily be. But nothing in his behavior suggested that Donald experienced the hallucinations typical of schizophrenia. He wasn’t seeing things that weren’t there, even if he was ignoring the people who were. Kanner kept Donald under observation for two weeks, and then the Tripletts returned to Mississippi—without answers. Kanner simply had no idea how to diagnose the child. He would later write to Mary Triplett, who had begun sending frequent updates on Donald: “Nobody realizes more than I do myself that at no time have you or your husband been given a clear-cut and unequivocal diagnostic term.” It was dawning on him, he wrote, that he was seeing “for the first time a condition which has not hitherto been described by psychiatric or any other literature.” He wrote those lines to Mary in a letter dated September 1942, almost four years after he’d first seen Donald. Perhaps hoping to allay her frustration, Kanner added that he was beginning to see a picture emerge. “I have now accumulated,” he wrote, “a series of eight other cases which are very much like Don’s.” He hadn’t gone public with this, he noted, because he needed “time for longer observation.” He had, however, been working on a name for this new condition. Pulling together the distinctive symptoms exhibited by Donald and the eight other children—their lack of interest in people, their fascination with objects, their need for sameness, their keenness to be left alone—he wrote Mary: “If there is any name to be applied to the condition of Don and those other children, I have found it best to speak of it as ‘autistic disturbance of affective contact.’” Kanner did not coin the term autistic. It was already in use in psychiatry, not as the name of a syndrome but as an observational term describing the way some patients with schizophrenia withdrew from contact with those around them. Like the word feverish, it described a symptom, not an illness. But now Kanner was using it to pinpoint and label a complex set of behaviors that together constituted a single, never-before-recognized diagnosis: autism. (As it happens, another Austrian, Hans Asperger, was working at the same time in Vienna with children who shared some similar characteristics, and independently applied the identical word--autistic to the behaviors he was seeing; his paper on the subject would come out a year after Kanner’s, but remained largely unknown until it was translated into English in the early 1990s.) Donald lives alone now in the house his parents raised him in. Perhaps the most remarkable aspect of Donald’s life is that he grew up to be an avid traveler. He has been to Germany, Tunisia, Hungary, Dubai, Spain, Portugal, France, Bulgaria, and Colombia—some 36 foreign countries and 28 U.S. states in all, including Egypt three times, Istanbul five times, and Hawaii 17. He’s notched one African safari, several cruises, and innumerable PGA tournaments. It’s not wanderlust exactly. Most times, he sets six days as his maximum time away, and maintains no contact afterward with people he meets along the way. He makes it a mission to get his own snapshots of places he’s already seen in pictures, and assembles them into albums when he gets home. He is, in all likelihood, the best-traveled man in Forest, Mississippi. This is the same man whose favorite pastimes, as a boy, were spinning objects, spinning himself, and rolling nonsense words around in his mouth. At the time, he seemed destined for a cramped, barren adulthood—possibly lived out behind the windows of a state institution. Instead, he learned to golf, to drive, and to circumnavigate the globe—skills he first developed at the respective ages of 23, 27, and 36. In adulthood, Donald continued to branch out. For a time, Donald’s care was literally shifted out into the community. Kanner believed that finding him a living situation in a more rural setting would be conducive to his development. So in 1942, the year he turned 9, Donald went to live with the Lewises, a farming couple who lived about 10 miles from town. His parents saw him frequently in this four-year period, and Kanner himself once traveled to Mississippi to observe the arrangement. He later said he was “amazed at the wisdom of the couple who took care of him". The Lewises, who were childless, put Donald to work and made him useful. “They managed to give him suitable goals,” Kanner wrote in a later report, " They made him use his preoccupation with measurements by having him dig a well and report on its depth. When he kept counting rows of corn over and over, they had him count the rows while plowing them. On my visit, he plowed six long rows; it was remarkable how well he handled the horse and plow and turned the horse around". Kanner’s final observation on this visit speaks volumes about how Donald was perceived: “He attended a country school where his peculiarities were accepted and where he made good scholastic progress.” But he never could count bricks. This, it turns out, is a myth.
Donald explained how it had come about only after we’d been talking for some time. It had begun with a chance encounter more than 60 years ago outside his father’s law office, where some fellow high-school students, aware of his reputation as a math whiz, challenged him to count the bricks in the county courthouse across the street. Maybe they were picking on him a little; maybe they were just seeking entertainment. Regardless, Donald says he glanced quickly at the building and tossed out a large number at random. Apparently the other kids bought it on the spot, because the story would be told and retold over the years, with the setting eventually shifting from courthouse to school building—a captivating local legend never, apparently, fact-checked. A common presumption is that people with autism are not good at telling fibs or spinning yarns, that they are too literal-minded to invent facts that don’t align with established reality. On one level, the story of Donald and the bricks demonstrates again the risks inherent in such pigeonholing. But on another level, it reveals something unexpected about Donald in particular. At the time of that episode, he was a teenager, barely a decade removed from the near-total social disconnect that had defined his early childhood. By adolescence, however, it seems he’d already begun working at connecting with people, and had grasped that his math skills were something that others admired. We know that, because we finally asked him directly why he’d pulled that number out of the air all those years ago. He closed his eyes to answer, and then surprised us a final time. Speaking as abruptly as ever, and with the usual absence of detail, he said simply, and perhaps obviously, “I just wanted for those boys to think well of me". I think it's normal when you have more than one child to hope that your kids will be friends at some point in their lives. As young siblings things like bickering, crying, and being mean to each other are (I think) sort of just normal things kids work through. But siblings also teach a child how to make friends; how to share, listen to others, help if they're crying, just generally think of someone besides themselves. So when the eldest child in the family has autism it makes for a strange dynamic. Where usually the second and subsequent children would be learning from the eldest, that's not always the case when the older sibling has autism. They may only be learning that tantrums have to be big to mean anything (they see autism sized meltdowns and figure that's the standard!), they don't hear any (or much) language, and so can often be delayed themselves, and picky habits caused by autism oversensitivity can become issues for all your children (even if you feel pretty sure it's not bothering all of them, they just all see their older sibling making a fuss). When we had babies after Caleb, he liked to hold them, and sit close to them, and poke their eyes (what kid doesn't do that!?), but it was less affectionate, and more like observing this new tiny person in the house. Like getting a puppy, Caleb was fascinated by his little sisters being just like big people, only small! He also enjoyed that they got to play while lying down on the floor, and would lay down with them and take their toys! Sometimes the siblings of a child with autism get ignored because the child with special needs requires more attention and care. So, the "normal" children can often grow up feeling less important. We were worried when we had more kids after Caleb, but now I can't imagine our lives, and Caleb's life, without the girls. But there are also stories of children with autism really hurting their siblings (unknowingly), and families having to make hard decisions about how to keep their other children safe. So, it can be a tricky road to travel. Something has been happening at our house lately though. Caleb is now 9, and is "coming into his own", as it were. He is learning to control his outbursts, learning to share and be kind, and learning (from us brain washing him!) that his sisters are his best friends. The girls are now 5 and 4 years old, and they look up to Caleb as much as ever. I know they don't understand why he is different, but we have talked to them about it. But, in some ways, kids don't care if someone (especially a sibling) is different. They just see someone older, and older is more cool, after all (well, when you're 4 and 5). I heard a story from someone at school that one day during recess, Abby (the 5 year old) sat at the edge of the soccer field to watch Caleb play soccer. No-one asked her to, she could have been playing on the playground, or with her friends, but she wanted to watch Caleb. And more recently she came home and told us that she was being picked on about being so small (she's got her own medical issues), and she told me, "first I sat on the bench and cried, then I wanted to find Caleb". I literally just started crying. I was sad she felt mis-treated, but more happy that she viewed Caleb as a safe place. Caleb (as you may know) has a hard-core obsession with Buzz Lightyear lately. He literally prattles on all day about, "Buzz Lightyear's utility belt, Buzz Lightyear's karate chop action, Buzz Lightyear's laser....". I (quite honestly) block him out a lot of the time (it's self preservation!). I have learned that if I say, "That's amazing!!!", he's happy, and will go harass someone else with his Buzz facts. The other day I am coming upstairs and hear Caleb in the girls room talking about Buzz Lightyear facts, and peek in to see if he is alone. But Keziah (4 year old) is listing to him so patiently. When he finally stops to take a breath, sweet Keziah says, "Yup...and he's green, and blue, and red....like a rainbow!". Caleb looked right at Keziah with a twinkle in his eye, some sort of excitement that his sister had thought of something else he could talk about! He rarely directly interacts with the girls with language (his interactions with them are generally just at meals, and doing games or puzzles, reading at night, or watching t.v. {and singing along|)-all of which he can get away with no real "conversation". So, to see what their version of a conversation was just melted my heart. A very simple interaction, but Keziah took Caleb going on and on as him wanting to talk with her and hang out. So she responded, and he reacted (very positively!) Siblings can feel shut-off from their brother or sister with autism. After-all, autism is "mind-blindness", meaning they literally can't understand that you think or feel differently from them. Being a sibling, and a friend, requires understanding that different people feel different ways. We still have many struggles with Caleb, but I honestly believe that he would not be where he is today without his younger sisters helping him in their way. When they used to cry because his meltdowns would be so loud and alarming, once he had "come down" from the fit, he would cry and say, "Caleb is really scared the girls". He knew it was too much, he could't seem to stop the fit, but he was aware (because he is empathetic) that he was upsetting his "best friends".
He is learning that love can look like a lot of different things, and can mean putting yourself out of your usual comfort zone. Abby insists on holding Caleb's hand when they cross the road to get on the bus. He usually won't hold hands at all! Keziah always covers hear ears and says, "Caleb you're too loud!!!" (she usually says it very loud herself!), but he will take it down a notch to be kind. We were worried that we wouldn't be able to handle Caleb, and any other children, but those girls, his wonderful sisters, have become some of his best teachers, and his best friends. I know today isn't my usual day to post about autism, but April 2nd is World Autism Awareness Day, and it's worth mentioning. Naming a time for awareness bring this issue into focus, and I just wanted to give some ideas of how you can help bring awareness. 1. Educate yourself about autism - Doing things like reading books, magazines, blogs, or local websites to see what your community is doing. You could attend an event on autism, or just ask a parent what it's like raising a child with autism. 2. Help others understand autism by sharing your story - Whether you have a child with autism, or have worked with an individual with autism, share about it! Write an article for your local paper, offer to write a guest post for a friends blog, or just say to someone, "did you know today is World Autism Awareness Day? I once worked with someone.... (or, "did you know my child has autism"). 3. You can donate to autism organizations - You can contact a local organization that works with children with autism and ask if they are in need of anything (toys, crafts, books, games, etc.). You could sponsor someone who is participating in a walk/run for autism, or you could donate an item/service to be used as a prize or auction item for a fundraiser. You can also make a financial donation to an autism charitable organization (local, national or international). Attending events or fundraisers is also giving to the organizations that help those with autism, so get to one of those if you're able. You could also donate your time to one of these events, or to a local organization. 4. Purchase autism awareness merchandise - Sites like Etsy, Zazzle, or Cafepress have lots of items that can be purchased (some to benefit autism research, and other just to spread awareness by way of you having an item that people notice) 5. You can "Light It Up Blue" - Many businesses, individuals and landmarks change their lights to blue to help bring awareness to autism. If you want to see some of the worlds landmarks Light It Up Blue, watch the video below! My hope for this day is that it spreads the word! I have said it before (and I will say it a lot more!), but people knowing about autism makes my life as a Mom of a child with autism a lot easier. When people know more, they stare less. They say less hurtful things. They even become helpful in situations. So, celebrate World Autism Awareness Day (and Autism awareness month), and spread the word! |
Hi, I'm Amy-Lyn! I am the lady behind this here blog! I live in the sticks with my animals, my super handsome husband, and my
3 amazing kids! Here you'll find things from recipes (gluten-free, paleo, and strait up junk food!), DIY ideas, thoughts on raising a son with autism, and whatever else pops into my brain! : ) Read more about me by clicking here! Want to Stay Connected?
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