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Avatar of Robert Rummel-Hudson

by Robert Rummel-Hudson

Running on Empty

July 9, 2012 in Featured, Featured Member by Robert Rummel-Hudson

Okay, so here’s the deal. I was going to write about the whole giant internet brouhaha concerning the rapper 50 Cent and his Twitter comments about autism and special ed. And if you’re interested in reading more about that, I’d encourage you to do so.

But if you want to know more, you’ll need to Google it and get all learned up, by golly. Because I honestly don’t have the energy to link it or quote it. My tank is empty.

I’m not entirely sure why. I’ve certainly never hesitated to stand up and shake my angry fists at the sky when celebrities have made similar statements in the past. I’ve written about the likes of Andy Richter, who made a horrible joke about microcephaly and then immediately apologized and seemed genuinely sorry, and Tracy Morgan, whose awful joke about how kids with developmental disabilities are “strong like chimps” was never addressed either by himself or NBC, despite the whirlwind of apologies only weeks before when he offended the LGBT community. I think it’s extremely important to pay close attention to the way people in the public eye address disability. Words matter. And I think it’s important not to just address what these people say, but also to dig deeper into why they say them, and why people may agree with them.

But 50 Cent’s comments, which at first targeted the autism community before branching out to the special education community at large, didn’t trigger much of a reaction from me, and all week, I’ve been trying to figure out why.

Part of it is, perhaps, simply a matter of condescension from me toward the artist himself. He’s hugely popular, and his offending tweets went out to something like eight million followers. That’s a large platform from which to casually make stupid comments. But that’s the thing. His comments WERE stupid. He didn’t have anything particularly well-thought out to say about persons with disabilities. He didn’t even make a joke that depends on some undesirable portrayal of persons with disabilities for its cheap laughs. He used our kids and our loved ones as a weak insult, and God knows that’s both awful and far too common. But for some reason, it didn’t inspire much more of a response from me than “Wow, what an asshole.”

I don’t think my lack of passionate response had much to do with either the celebrity making the boneheaded comment or the nature of the comment itself. I think it’s me.

My outrage tank feels empty. When I hear someone on television or in a movie make a remark about someone or something being “retarded”, I find myself muttering, “Really? Nice.” But I don’t know, I feel the fight slipping from me. Perhaps it comes from observing some of the larger battles that seem to be going against us. Watching special education programs getting defunded or cut altogether all across the country, or seeing families and the technologies that help them get devoured and discarded by cheap legal scuffles, or watching as my own daughter’s school disregards her IEP goals and allows her AAC skills to stagnate and her socialization to wither, these all suck the spirit dry, like vampires or knife-wielding assassins. One bite here, one quick stab there, and before you know it, you’ve bled out.

I know it’s wrong, and I’m sure I’ll find the energy to take up the banner again. But right now, when I hear someone like 50 Cent make a remark using our loved ones as a punchline or a cheap insult, I don’t feel shock or outrage, and I might even feel less anger than before. Honestly? I just feel like I’ve been handed a reminder of how the world sees my daughter and kids and adults like her. It verifies an already known fact, that for every person who loves her (and there are plenty who do, an astonishing number around the world), there are equal numbers and more who see her as valueless, as unworthy of compassion or respect, people who see her (and most likely your kids, too, if you’re reading this) as something less than a person. Fighting that perception feels like too much sometimes. It feels too big, too pervasive, and the symptoms of that perception seem too numerous to address. Expressing outrage at public statements by famous idiots could be full-time work. And the pay sucks.

I’m glad that others with fuller tanks feel up to the fight. I’ll be there again one day soon, I know it. But not just now. I’m running on fumes.

(NOTE: Incidentally, in the interest of fairness, I should mention that 50 Cent did finally apologize for his remarks over the weekend. Well, there you go. Good for him, I guess.)

——–

Please visit Build-A-Bear Workshop’s blog where Support for Special Needs site co-founder is telling her daughter’s story.

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Avatar of Jennifer King

by Jennifer King

Birthdays and Special Needs: Happy Birthday Max

July 3, 2012 in Community Wisdom, Featured, Featured Member by Jennifer King

On the Fourth of July my older son Max will be nine years old, which works out perfectly for him.  Despite his autism he has always loved parades and fireworks.  I may worry about losing him in the crowd, but I never worry he won’t have a good time. He is probably the happiest person I have ever known. I don’t know many people who wake themselves laughing!

This last year was a big year for him. He started spending some of his day in a mainstream class, something that I admit worried me. But after a period of adjustment it worked out quite well. He was also bringing home more and more schoolwork marked, “Did this on his own!” and “Required no prompting!”

He was even invited to a couple of birthday parties. One we passed on because it was at a bowling alley and I was worried about the noise level. We made it to the other one, where they had a bouncy castle and pizza, two of Max’s all-time favorite things.

Towards the end of the school year I was feeling confident enough to allow him to walk from the front door to his bus all on his own. ( I admit I stood in the door I watched.)

His communication remains an issue, his speech team at school feels confident that he is developing functional language skills.

In his own way and in his own time he is gaining independence and confidence, and I couldn’t be more proud of him.

The future remains a question mark, but I try no to focus on that. He has come a long way already, and there is no telling how far he will go.

Yes, it’s easier to imagine a future for his neurotypical brother, but the truth I can’t really know what his future holds either.  And when it comes down to it, what I want for both of them isn’t really so different. I want them to learn and grow. I want develop their gifts as best they can, to be as much as they can.

And I know it’s a cliché to say it, but what I want most is for them to be happy.

So far Max has that one down pat!

——-

Please visit Build-A-Bear Workshop’s blog where Support for Special Needs site co-founder is telling her daughter’s story.

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Avatar of Admin Dawn

by Admin Dawn

Tips for Feeding Kids with Special Needs

May 24, 2012 in Featured, Insider Insight by Admin Dawn

By The Real Food Moms, Jeannette Bessinger, CHHC and Tracee Yablon-Brenner, RD, CHHC, www.realfoodmoms.com

For your child’s body and brain to function at their best, it is important to provide a diet high in amino acids, the building blocks of protein. But since the body is unable to store excess amino acids it’s smart to split up your child’s protein supply—ideally among the three main meals and two snacks. By feeding meals high in protein throughout the day, you help the neurotransmitters in the brain function better, and stabilize blood glucose levels—preventing hyperglycemia and reactive hypoglycemia—blood sugar “ups” and “downs” that can affect some children’s ability to focus and/or settle down.

One cardinal nutrition rule is to stay away from simple carbohydrates, which break down into glucose and release too quickly into the blood stream. Sugar and high fructose corn syrup are a few examples of simple carbohydrates to avoid. Children are affected differently by sugar, however many studies suggest that sugar negatively affects behavior, impacting aggression, attention, hyperactivity, mood and proper mental function. It is best to replace sugary drinks and snacks with healthy high protein snacks like veggies with hummus or nut or sunflower butter; smoothies with whey or rice protein or nut butter; nuts, seeds, sliced hard boiled eggs, fresh fruit with nut or sunflower butter, yogurt with granola or with nuts and seeds and a dash of honey. When serving foods with added sugar, it’s best to keep it below 15 grams per 100 grams. Cereals should have 3-5 grams of sugar per serving, max, and it’s best to include protein with breakfast, e.g., hardboiled eggs or yogurt with nuts and seeds and a dash of honey. Incidentally, organic honey has many beneficial nutrients—in addition to being a taste treat!

Another essential is to remove synthetic food additives from your child’s diet. For a food additive to be allowed in the diet, it must be certified as “generally recognized as safe” (GRAS), which means it will not have a significant negative effect on health. Unfortunately we don’t know the long-term effects of ingesting chemicals on our nervous, immune, respiratory and endocrine systems. There are 24 synthetic food additives, and we are going to address the four major categories: artificial colors, artificial flavors, artificial preservatives, and artificial sweeteners.

Artificial colors have been embroiled in controversy for some time. A November 2007 study published in The Lancet stated that artificial colors in children’s diets contributed to hyperactive behavior. The UK’s Food Safety Agency released this statement on July 20, 2010: “An EU-wide health warning must now be put on any food or drink that still contains the colours that are thought to cause hyperactivity in some children. This is following the Southampton Study, commissioned by the Agency, which suggested a possible link between consumption of six food colours and hyperactivity in children. The colours are Tartrazine (E102), Quinoline Yellow (E104), Sunset Yellow (E110), Carmoisine (E122), Ponceau 4R (E124) and Allura Red (E129).” There had been a voluntary ban on food coloring in foods in the UK. In the United States, Blue No.1, Blue No. 2, Green No.3, Red No. 40, Red No. 3, Yellow No. 5 and Yellow No. 6 are still permitted in our foods and medicines. Some of these chemicals trigger histamine release and create allergic reactions like hives (uticaria). In the September 2010 issue of the American Journal of Psychiatry, Stevenson, et al., found strong evidence that histamine release affects hyperactivity levels in animal models and also influences frontal cortex dopamine release. In this study, there was improved behavior when artificial color was removed from the diet. The research underscores the importance of avoiding food and medicine with artificial colors. Moreover, most artificial colors are made of a mixture of coal tar. The International Agency for Research on Cancer says that products with 5% crude coal tar are considered a Group 1 carcinogen. How’s that for a reason to remove artificial color from your child’s diet?

Artificial flavors are also a concern, especially (MSG) monosodium glutamate, an amino acid from glutamic acid. MSG is used in commercial cooking to enhance the flavors of many common processed foods including canned soups, frozen dinners, seasoning mixtures, and fast foods. Many fermented products have naturally occurring glutamate, like Worcestershire sauce, soy sauce and steak sauces. Glutamate is also in many other additives like soy extracts, protein isolate, hydrolyzed vegetable protein, hydrolyzed soy protein, hydrolyzed yeast, and autolyzed yeast. MSG is not always easy to identify on a label. Be on the lookout for words like “spices” and “natural flavorings” on a food label, which means it might contain MSG. Two food additives, “disodium guanylate” and “disodium inosinate” are only used with MSG, so if they’re on the label, there’s a high likelihood that MSG is in that product.

Glutamic acid, which MSG is made from, is classified as an excitotoxin. However, it is considered to be GRAS by the FDA. Many people are affected by MSG, and children who have special needs are especially vulnerable since they might not be able to communicate their discomfort, which may manifest as a headache or nausea. Removing artificial flavors from your child’s diet is the safe way to go, and could help to reduce behavioral problems.

Artificial preservatives, such as butylated hydroxytoluene (BHT) and butylated hydroxyanisole (BHA) are being investigated for provoking chemical sensitivities. These preservatives have been associated with causing broncho spasm, rhinitis and more particularly in triggering hives (uticaria). Many studies on mice have shown that these preservatives cause learning deficits, difficult sleeping, developmental delays, aggression, decreased orientation reflex. Key reasons in removing artificial preservatives from the diet because that could also relieve behavioral symptoms such as aggression, hyperactivity, developmental delays.

Artificial sweeteners are much sweeter than table sugar, “sucrose,” and can interrupt neurotransmitter balance, which could make behavioral symptoms worse.

The following sweeteners have been tested for their safety through the Center for Science in the public interest. Aspartame which goes by Nutra-sweet, Natra-taste and Equal, is one that people who have Phenylketonuria (PKU) have to avoid because they can’t break down phenylalanine which can accumulate to toxic levels. Sorbitol, xylitol, mannitol, maltitol, lactitol, isomalt, erythritol, and hydrogenated starch hydrolysates are sugar alcohols that can cause stomach discomfort and diarrhea. Acessulfame known as Sunnet, Sweet One, and acessulfame potassium, should have more testing and should be avoided because rat studies found that it caused tumors, mostly benign but some malignant. Saccharin, which is Sweet n Low, may cause cancer. Stevia can’t be metabolized in our bodies which is why it has zero calories. More testing should be done on its safety. Sucralose, which is Splenda, is actually sugar chemically combined with chlorine…Buyer beware! Tagatose, a very new type of sugar made from milk sugar lactose, can cause digestive issues such as gas, bloating and nausea because it’s not well absorbed. It can be found in Diet Pepsi, Slurpees from 7-11, etc.

These are a few examples of why package label reading is essential in today’s world. Many of the sugar substitutes mentioned are found in gum, yogurts, baked goods, and drinks, including iced tea, soda and juices. It is safest to use natural forms of sweeteners. Some of the best include organic honey and turbinado sugar, which is raw sugar crystals formed by spinning the sugar in a centrifuge. The juice released is crystallized to keep the rich molasses color and flavor, and it’s less processed than conventional table sugar. Sucanat is the trademark name for the turbinado process.

Trans-fat is the end result of hydrogenation, the process in which hydrogen is added to liquid vegetable oil. Partially hydrogenated fats contain Trans-fat, and are less expensive and have a longer shelf life than standard fats. Trans-fats interfere with an enzyme called delta 6 desaturase, which is important in converting essential fatty acids Omega-3 and Omega-6 fatty acids to the active form (ARA) arachidonic acid, (EPA) eicosapentaenoic acid, and (DHA) docosahexaenoic acid used by the brain. It is important to avoid Trans-fat and partially hydrogenated vegetable oils. A deficiency of 6 desaturase causes a deficiency of ARA, EPA and DHA, which are important for brain development, brain functioning, brain signaling and proper vision processing. Research has shown that children who have Autism, ADD, ADHD, dyslexia, and dyspraxia may have low levels of 6 desaturase so when they eat foods containing Trans-fat or partially hydrogenated vegetable oils, it can make these conditions worse (1). To increase the activity of the desaturase enzymes, it is important that the diet includes an adequate amount of vitamin B3, vitamin B6, vitamin C, magnesium and zinc which are available by eating local organic fruit, vegetables, whole grains, organic yogurt, and meat, nuts and seeds (2).

Including foods rich in Omega-3 fatty acids cannot be overemphasized. Some basic sources are wild Alaskan salmon, seaweed, eggs from hens fed a diet high in Omega-3’s, flaxseeds, pumpkin seeds, walnuts and algae. Caveat: To ensure food supplements are free of mercury, use either an algae-based or fish oil Omega-3 fatty acid supplement, which is third party-certified and molecularly distilled.

By purchasing organic-labeled products, you’re guaranteed that the foods you’re feeding your family are free of artificial color, flavor, preservatives, trans-fat and pesticides. Not all products have the USDA organic seal because certification is voluntary and expensive. So it’s important to read the labels carefully to know what you’re really buying. To have the USDA seal means a product is comprised of 95 percent organic ingredients. Foods that have at least 70 percent organic ingredients can use the phrase “made with organic ingredients” and list up to 3 ingredients. If the product has less than 70 percent organic ingredients the name of the organic ingredients can be included on the food label.

To get back to basics, incorporate the Real Food Moms three P’s: Plan, Purchase and Prepare real food! This takes a little organization, but you are ensuring delicious, unprocessed food for you and your family. You should definitely see some behavior and long-term health benefits for the entire family.

Get more from the Real Food Moms at their blog!

Stordy, B. Jacqueline. Dark adaptation, motor skills, docosahexaenoic acid, and dyslexia. American Journal of Clinical Nutrition, Vol. 71 (suppl), January 2000, pp. 323S-26S

Osmundsen H, Clouet P. Metabolic effects of omega-3 fatty acids. Biofactors 2000;13(1-4):5-8 2000. PMID:15800.

—

Republished from January 2011

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Avatar of Jennifer King

by Jennifer King

Comments, Questions and Autism

May 1, 2012 in Featured, Featured Member by Jennifer King

My son Max will be turning nine in July.  As he gets older I am getting a lot more comments and questions about him.

I can handle most honest questions fairly well.  The comments and the rude questions drive me up the wall.

Last year, when we went to the  Minnesota Renaissance Festival, Max spent a good part of the day riding in a stroller, and boy were there a lot of comments.  ”He should be walking!” “Aren’t you too big boy a boy to behaving that way?”  ”Don’t you think he’s too big for that stroller?”  ”What’s wrong with him anyway?”

The thing is,  even if it sounds like a question, you can tell they aren’t really asking.  They are letting me know they don’t approve of how I am handling my child.

The first few times I smiled and explained. I told them how Max has autism.  How he has low  muscle tone and tires easily.  How he needs his space.  That he isn’t being rude.  He simply doesn’t speak much.

I rocked those teachable moments.

But by the end of the I was getting  tired and annoyed and I didn’t hide it well.  ”Autism,” I answered curtly.  ”He has autism,” and I walked on. Leaving them embarrassed, confused and annoyed behind me.

Don’t get me wrong, there were positive encounters that day, but the rude looks and the intrusive questions somehow linger the longest.

Summer is rolling around again, and that means day trips.  Zoos and festivals.  Long walks and crowds.  Stroller season.

So my questions is, how do you handle comments and question? Especially when you feel the person is being judgmental or downright rude?  How do you manage to stay patient?

—–

Jenny is a single mom to two boys, one with autism and one neurotypical living smack dab in the middle of Minnesota. She blogs at http://www.jitteryplanet.com/ and is on Twitter as @jitteryplanet 

 

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Avatar of Jennifer King

by Jennifer King

Walking the Special Needs Tightrope

April 3, 2012 in Community Wisdom, Featured, Featured Member by Jennifer King

Max, my 8-year-old son, has autism.

I’m not fond of the high functioning versus low functioning dichotomy, but I think it is safe to say that Max is minimally verbal and that his receptive language surpasses his expressive language.

Last year I learned at Max’s school he does jobs. Chores, basically.

Other than picking up his toys, I had never really asked him to do chores at home, and I have to admit, I had even backed off on that after his diagnosis.

It wasn’t a conscious decision.  I didn’t sit down and think, “Max can’t do these things, he’s autistic.”  Yet I had dialed my expectations way back and that was a mistake.

So I started asking him to help more at home and for the most part he has risen to challenge.

He is getting better and better at following instructions, such as, “put this on the table” or, “bring that to mommy.”  Using simple, “first this, then that” phrases helps a lot.

When Max gets in the van these days, I ask him to hand me the seat belt so I can buckle him in.  He usually does this no problem.

Except for when, a few ago days, he didn’t. Max climbed in his booster seat and I asked him to hand me the seat buckle, but he  just turned his head and looked out the window.

This annoyed me far more than it should have.  I asked him again.  There was still no response.  Getting frustrated I said, “If you want to go to the store, you need to hand me the buckle NOW!”

At this Max started to hand me whatever he could reach, which happened to be the toys and books tucked into the seatback pocket in front of him.  It was clear he had no idea what I wanted from him.

He hadn’t been ignoring me, or disobeying me.  He simply hadn’t understood. I thought back about what exactly I had been asking him.  I used the word buckle instead of the seat belt.  I restated the question, asking for the seat belt this time.  He smiled and laughed a little, clearly relieved.  He found the seat belt and handed it to me.

I changed one word out of the sentence, and he had no idea what I wanted.  I had assumed he understood and I was wrong.

The good part is Max forgave me and now he knows what a seat belt buckle is.  The bad part is I hadn’t wondered why he didn’t do as I asked.  I assumed he understood me and I started to lose my temper.  A big mistake.

Sometimes I feel like I am walking a tightrope.

Lean too far one way, and I’m holding him back. Too far the in the other way, and I’m confusing and frustrating him.

Sometimes it’s a more than a little overwhelming, but as his teachers are always telling me, nobody knows Max better than I do.

I need to trust myself even though I will make mistakes from time to time.

And I’m not going to fall off the edge of the earth when I do.

————-

Jenny is a single mom to two boys, one with autism and one neurotypical living smack dab in the middle of Minnesota. She blogs at http://www.jitteryplanet.com/ and is on Twitter as @jitteryplanet

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Avatar of Julia Roberts

by Julia Roberts

Listening and Learning

March 1, 2012 in Featured, From Julia by Julia Roberts

I made the decision to run a piece from a regular contributor on Monday. I have to be honest, I wasn’t prepared for how some people reacted to it. I’m sorry, but that’s my truth. This is because I read the piece and interpreted it one way (as many other people did, who left comments) and some people in the self-advocate community read it completely differently. I understand why. It doesn’t change that I read it and still read it in a way that is not literal, but more metaphorically. However, I absolutely don’t dismiss there are people who do read it literally and I appreciate that more than I did three days ago. Some people read it as if the writer was saying, “I don’t care where you are coming from, you should not be offended by anything I say!” and I read it was “Wouldn’t it be nice if we were all not offended when discussing these issues!” The writer included himself in that description and I thought the same about me, “wouldn’t it be nice if I weren’t offended by what some people say.” I’m not being glib when I say this; but I have literally tried to put this into practice the last three days.

I could back away, stay where I feel comfortable, but in the end, I don’t think that is the right thing to do. So I take responsibility for running the piece and also for shutting down comments. It’s important that I say I still stand by the writer, Rob and I stand by the piece in how I and others interpreted it. I will say, I wasn’t prepared to address the issues as if the piece was literal, and I very much see and understand that now. I wasn’t prepared and I’m so sorry about that. I panicked and I didn’t want people to get hurt (more) and so I shut comments down, which I realize is ironic. I stand by that decision too. I think I wasn’t clear where to intervene in the comments and when not to, because I’m human. I’m leaving the piece up because taking it down would be trying to erase that it happened and I won’t do that, even though that request has been made.

When I shut down the comments I wrote that I would welcome discussions privately and a few people reached out to me and I thank those people. I can’t say I’ve agreed with everything that was said, but I can tell you that I have learned and my mind has opened, which I see as a good thing. Both for our community and for me personally. The discussions were civil, pleasant even, and I couldn’t help but long for that for everyone is our community. For the chance to really be heard (this was not a one-way street, I also felt like people listened to me). I thank the people who reached out to me respectfully. I thank you for the dialogue and your collective promises to help me understand things from your perspective again in the future, which I am sure to need some day.

I’d also like to say that someone who has been conversing with me helped me understand that while my pain in parenting children with differences is mine to have and they respected it, their pain is from the basis of being the person who is the target of constant marginalization — their pain is greater. And I get it. I get it because my children also suffer that and will in the future when they become their own advocates. Their pain isn’t mine but it does have a certain level of importance over mine. I get that in a way I didn’t a few days ago.

Where do we go from here? 

It think it would be a disservice to the disability community to just let this post be it and so I’d like to make an offer. In an effort to make this space a place where people can learn, I’d like to make an open invitation for essays from people who identify as self-advocates. I’d like to make it a regular series and not just a shot this month because this happened. I like it to be once or twice or more times a month if there are enough essays and especially if some people would like to contribute regularly. If you think you might like to share your experiences with orignal essays around 600 words, I would welcome a discussion with you to see if it might be a good fit, so please email me at julia AT supportforspecialneeds DOT com. I’m still open to private emails regarding any of this situation.

In the meantime, I’d like to link to a blog of a very articulate self-advocate, Rachel Cohen-Rottenberg. In our discussions, we’ve not agreed with everything, but in our communications, I’ve found her to be respectful and kind, and passionate about the issues that impact her every single day. I’m linking because if you’d like to learn more about what she faces in the world of being a self-advocate, her blog is a great place to start.

Thank you again for your patience as I navigated how to handle this situation and I thank you for the extra time I needed in order to figure out the best way to proceed. Even in that, I am sure to make mistakes. Just know that I am still listening and learning.

–

It was an oversight to leave a link out, so this is edited to add the link to the original post: No Offense

Edited (again) to add an omission, there were people without disabilities who did not like the piece as well and I did not note that.

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Avatar of Robert Rummel-Hudson

by Robert Rummel-Hudson

The Big Bad

January 30, 2012 in Community Wisdom, Featured, Featured Member by Robert Rummel-Hudson

Recently, I had a discussion with someone online about The Holland Thing. If you are reading this, here on a special needs support site, then I would be shocked if I even had to include a link to explain exactly what I’m talking about when I say “The Holland Thing”. (Okay, fine. Here you go.)

The short short version of the essay titled “Welcome to Holland” posits that discovering you have a special needs child is like getting on a plane bound for beautiful, sunny Italy but landing in Holland instead. At first, you’re disappointed because all your friends went to Italy and that’s what all your own expectations were based on, but soon you learn to appreciate Holland for the swell place that it is. (Legal pot and hookers probably help.)

This is a topic that has previously been talked to death. I won’t delve too deeply into it, but the similarly short short version of many parents’ rejection of The Holland Thing is that for many of us, perhaps even most, having a child with a disability isn’t just different. It brings its own element of chaos and uncertainty and pain. Our kids aren’t just different. They aren’t just neurodiverse. Our plane didn’t land someplace charming.

Our possible world contains some scary things indeed. Including the scariest, the one possible outcome that keeps us up late most of all. Of all the things that might befall our children, from developmental delay to social awkwardness to persistent non-verbalism to physical impairment, there’s that one that we fear the most, the one that involves burying our children. The Big Bad.

“Welcome to Somalia”, perhaps.

For some parents, the Big Bad lurks around the corner, very close indeed. For others like myself, it is a more remote possibility. For some, it is perhaps even inevitable. But for those of us who fight off the Big Bad, either as an active threat or just a possibility to scare the shit out of us every day forever, the idea of celebrating our child’s difference is… complicated.

Schuyler’s brain presents an enigmatic and wonderful landscape. Even as she moves more and more into our world and out of that internal kingdom where she spent so much of her childhood, she is still largely a mystery. I adore that mystery; exploring it with her is the singular joy of my life. But there’s danger there, too. Danger to her, which of course means danger to all who love her and whose lives would become unbearably empty and grey without her.

Recently, my Google alert for “polymicrogyria” sent me a link to a story that mentioned a boy who died as a result of his polymicrogyria at the age of thirteen. I confess, it shook me up. Most kids whose PMG proves to be fatal succumb at a very early age, usually from hard seizures. But here it was, a reminder that Schuyler’s own monster could very well be the Big Bad. Probably not, but if you’re a parent, you’ll understand just how very little comfort “probably not” can bring.

So we celebrate the child we have, and we do so without reservation, without an asterisk or a qualification. But we don’t let ourselves buy into a pretty lie, one which suggests that gentle words or peppy cheerleading or the niceness of a figurative Holland will protect our children if the Big Bad decides to visit.

And yet. We stand, and we love, and we fight when we can. I’ve written before that special needs parents take up rubber swords against the monsters if that’s all we have. And we do so not because we are brave or special or smart, but because what else are we going to do? Surrender? There’s another analogy I’ve heard, that having children is like letting our hearts hop out of our chests and walk around in this grand rough world, free and so very terrifyingly vulnerable. That one works for me.

Having children who are fragile in some way, it makes for a kind of middle place for parents. We are referred to as “typical” because our own brains and our own bodies haven’t betrayed us, but we don’t feel like we’re typical. Our lives diverge, drastically and irrevocably, from the typical, usually from the very beginning. When we see other parents at the mall, we don’t necessarily identify with them.

But I’m going to go out on a limb and suggest that because of our children’s fragility, and because of our at least nodding relationship with the Big Bad, as well as a host of Smaller Bads, we cherish our threatened children more deeply than typical parents. I don’t know what kind of father I would have been to a neurotypical Schuyler, but I am certain that I would have been a lesser one.

As parents of kids with possibly life-threatening disorders, we live with the threat of the Big Bad hovering over everything we do. But there’s a payoff, a Big Good that runs through our hearts and our relationships with our children like an unbreakable golden thread. I can’t describe it to you, not clearly. But that awareness of the preciousness of time, it’s a double-edged sword. It keeps us awake at night, sure. But it keeps us awake during our time with our children, too. If you thought the Big Bad might just have your kid’s number, you’d spend every possible moment sucking up all the happiness you could, even if you kept a rubber sword at your side the whole time. And in doing so, you’d find a concentration of satisfaction and a life well-lived that most parents can’t even begin to imagine.

Which isn’t such a bad thing at all, really.

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by Shelley Mannell

DYNAMIC CORE FOR KIDS CASE STUDY: 9 year old child with ASD

June 13, 2011 in Featured by Shelley Mannell

At four years old Sindy was diagnosed with low tone and gross motor delays. Subsequent issues included balance, gross and fine motor delay, increased frequency of muscle sprains, anxiety, sensory processing challenges.  Last year at age 9, she was diagnosed with high functioning autism.

Presentation immediately prior to Dynamic Core treatment:

Sindy initially presented with decreased strength and endurance issues in her arms, legs and trunk.  She had poor sitting posture (see Figure 1) which created difficulty in sitting for more than 15 minutes without low back pain.  Her seated posture also limited her ability to look up and down from the blackboard which added to her academic difficulties.  In addition, her poor standing (see Figure 2) and walking posture made standing for more than 15 minutes painful and she was unable to walk for more than a few blocks without fatigue.  Sindy had additional difficulty standing on one foot, going up or down stairs without holding on to the rail and had difficulties with jumping, skipping and hopping.  All of this made joining activities on the playground at school challenging and required modification of home activities.

Sindy also had frequent complaints of headaches and neck/shoulder pain due to poor posture while writing or keyboarding at school.  These complaints occurred once or twice per month, requiring the need to leave school so she could be have heat and pain medications at home.  She also experienced frequent sprained her ankles on uneven ground bi-monthly, also resulting in the need to leave school for treatment.

Sindy’s primary strategy for creating stability in her trunk was breath holding during movement and prolonged tasks (sitting, writing).  It was observed that this breath holding also further contributed to her sensory processing difficulties (as breath holding increases the fright/flight/fight activity of the sympathetic nervous system).  This also tended to worsen her anxiety.

Figure 1

Figure 2

 

Intervention:

Treatment was provided over a series of 1 hour sessions.  The sessions varied from once every 2 weeks to once per month over 4 months.

Dynamic Core for Kids is based on creating the best function of the inner core muscles (which stabilize the spine and pelvis before movement begins) in partnership with the outer core muscles (which are responsible for movement).  We initially accomplished this for Sindy by teaching proper breathing before she began to move to activate the inner core muscles through diaphragm activation; the phrase “blow before you go” was an important cue. She was able to fully utilize her diaphragm by creating neutral ribcage and pelvis position through the use of pillows in lying and a wedge in sitting.

Results:

Treatment resulted in Sindy achieving and maintaining more neutral posture in sitting and standing (Figures 3 and 4).  A seating support (wedge or properly positioned office chair) continues to be utilized to maintain proper alignment and build endurance during home and school activities that required the prolonged sitting position.

Figure 3

Figure 4

Sindy has not complained of neck pain or headaches since her posture has improved.  Her balance is much better and there have been no ankle sprains since treatment with Dynamic Core. Her Core breathing is now used as a management technique for her anxiety.  It is possible for her to take longer walks and she now enjoys swimming as a regular recreational activity. Overall, she is more confident in her movement.

 

 

The Dynamic Core for Kids approach was co-created by Shelley Mannell PT and Julie Wiebe, PT.  For more information please go to Shelley’s website/blog at www.heartspacept.com or to Julie’s website/blog at www.interiorfitness.com.

Photographs used with permission.

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Avatar of Julia Roberts

by Julia Roberts

Big Daddy Autism, Sharing Humor

April 29, 2011 in Featured, Giveaways by Julia Roberts

I was so pleased when Big Daddy Autism said he’d do an interview and book giveaway on our site…it’s timely since it’s the end of Autism Awareness Month. One thing is for sure, Big Daddy (seems strange for me to call him that but yet, it feels comfortable too!) is funny, entertaining and doing more than his part to change the perception that living with children with special needs is all gloom and doom. We’re giving away a book to a lucky person who wants to laugh.

 

So, tell me about you and your family and specifically, about the star of your blog, Griffin.

What can I say about Griffin?  Actually, I can say a lot about him.  I just wrote a book about life with him and I’ve been blogging about his antics for about eight months now.  But, to sum it up in a few words, he is thirteen, adorable, autistic, and the most unique individual I have ever had the pleasure of spending time with.  And I’ve spent time with a ton of unique individuals!

What can I say about me? Um, how big is the internet and how much time do you have?  Let just say Griffin comes by some of his quirkiness honestly.  Since retiring from my life as a complete lunatic a few years ago, I now spend my days enjoying my kids, doing crossword puzzles, yelling at the TV, and thinking about what to eat for lunch.   I occasionally blog and never miss an opportunity for a long nap.

My lovely wife, Mrs. Big Daddy is the glue that holds the Big Daddy clan together.  Stunning with a great sense of humor.

Finally there is Lil Sis, Griffin’s ten year old sister.  Awesome.  No further description required.

Does your book speak to the special needs community at large?  The reader doesn’t have to have a child with autism to “get it,” right?

The reader does not have to have a child with autism to “get” my book.  In fact, two of the twelve bloggers who contributed essays in the book don’t even have children on the spectrum.

My book is about acceptance more than anything else.  Sure there are a ton of poop, fart, and booger stories in there.  But mainly I share how my family uses creativity, humor, and acceptance to overcome adversity.  When Griffin was first diagnosed in 1998/1999, we felt as though our lives collapsed.  While there were many resources focused on coping with tragedy and practical advice for dealing with a disabled child, we found few references describing how having a child with a disability was not all about sorrow, lost hopes, making do, and heartache but rather could be a lot of fun.  To fill this void, we began a crusade, of sorts, to make the public aware that life doesn’t end with a diagnosis of a disability.

Any disability, not just Autism.

 

Please share a link to a favorite blog post (or two) that really illustrates how your family handles autism.

Here are two I really like:

Nobody and Pencil Me In (just two of his many funny posts! Go ahead and read, we’ll wait!)

 

Any words of wisdom to parents who are just getting a diagnosis of a special need?

Just two -  Acceptance and Humor.

By finding and recognizing the humor and unorthodox beauty in our lives, we were better able to survive it.  Laughter allows us to move through tragic circumstances.  Similarly, Our lives changed for the better when we acknowledged our situation and then decided what we’re going to do about it.  We feel as though acceptance is being able to embrace what is rather than constantly wishing for what is not and what can never be.  Just because we accept Griffin’s condition does not mean we are thrilled about it or that we wouldn’t prefer it to be different.  By accepting it, we take the first step towards making the best of the situation.  We can then get on with the business of changing what we can and learning how to live with that which we cannot.  If we never took that initial step of acceptance, we would have been stuck, and if we never accepted our circumstances, we never would have known if any part of it could be made better.

 

Tell us about your book! How long has it been in the works? What was the best part about working on it and the hardest?

Technically, it’s been in the works for thirteen years.  That’s how long Griffin has been giving me worthy and awesome material.  But really, I started putting it together a few months ago when I saw how well my anecdotes and blog posts were resonating with other parents.  I decided, I need to share Griffin with the world.

The book is basically a bunch of essays.  I think the subtitle says it all (and then some);  Never before published hilarity, favorite posts from the blog, marginally helpful tips, poorly drawn cartoons galore, and oodles of original stories from some of Big Daddy’s favorite bloggers.

The best part of the process was definitely reliving all the funny stories.  The hardest part – grammeer and spelinge!  Just kidding.  I know there is only one “e” in grammeer!

 

Want his book?

To win a signed book from F. Lewis Stark (aka Big Daddy Autism) leave a comment, Tweet (use @supportSN in the tweet so we know!) or Facebook share this post (and like and link our Facebook page by Monday (May 2nd) 12 midnight! We’ll pick a random winner (we like to use Random.org)  and have the book shipped directly to you from Big Daddy himself!

—-

About Big Daddy Autism: Big Daddy brings his unique view of fatherhood, and the world at large, to life on this frequently updated and hilarious blog. His tales and cartoons from the lighter side of raising a child with autism always spark laughter and plenty of comments. By telling funny and off-beat stories from his life, Big Daddy shows that raising a kid with special needs is not all doom and gloom. To the contrary, it can be quite humorous and inspirational.

About the book: Big Daddy’s Tales From the Lighter Side of Raising a Kid With Autism. Never before published hilarity, favorite posts from the blog, marginally helpful tips, poorly drawn cartoons galore, and oodles of original stories from some of Big Daddy’s favorite bloggers.

 

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Avatar of Jennifer King

by Jennifer King

Autism Awareness Month: If I only knew…

April 25, 2011 in Featured by Jennifer King

It’s April. Autism Awareness Month, and the month is almost over. As the mother of a seven (almost 8 year old son) on the spectrum, I felt like I should say something. In fact it’s been weighing on me greatly, just what I should say.

The truth is I have written and re-written this post what feels like a million times and was never happy with it. I wanted to say something, but I’m no expert of any kind. I’m just a mom, not even one of those Autism Warrior Moms you hear tell about. I’m just an ordinary mom of two regular type kids, one of whom happens to have autism.

So then I started over from scratch. I thought, if there was one thing I wish someone could have told me about autism before my son was diagnosed, what would it be?

So here goes…

There is a saying you may or may not have heard, ”If you’ve met one person with autism, you’ve met one person with autism.” It’s seems sort of obvious doesn’t it? Not all typical people are exactly the same, why would those with autism be. But it’s a truth that I think many people don’t fully grasp. Before my son was diagnosed, I didn’t get it. Not at all.

I thought I knew a fair amount about autism. I’d read a couple of books. I’d met a handful of people who’d been diagnosed with it. I knew about Temple Grandin from when I was taking animal husbandry courses in jr. high and high school.

But the truth is the image I had in my mind was a very stereotyped one, and it was an image that did not match up with my son. Even when family members suggested I look into it, I just couldn’t see it. I did mention it to the pediatrician who didn’t see it either. She saw some delays, as did I, but not autism. If I’d known, I mean really known? I don’t think I would have left it at that.

I’d wish I’d known that kids with autism can be goofy, and silly and giggly and cuddly. I wish I’d known just how smart and talented and loving and amazing children with autism can be.

I wish I’d known all that, I mean really known that, when Max was little and first showing the signs. Would an earlier diagnosis have made much of a difference for him? It’s hard to say, but at least I would have known I had done my best for him from the start.

I would have understood why he struggled with things that other children seemed to sail through. I like to think I would have been more patient with him. A lot more patient.

And maybe… just maybe… I wouldn’t have felt so alone.

Because there are so many of us. Not just parents of children with autism, but all of us parents of children with special needs, children who struggle to fit in a world not made for them. We are not alone.

We don’t have to be.

Community member Jenny who blogs as Jittery Planet…Single mom to two boys, one with autism and one neurotypical, starting over again smack dab in the middle Minnesota.

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