Sunday, December 27, 2009
In it she talks a little bit about each of our kids, her frustrations and fears, her attempt at tackling college with all that's going on around us, and putting up with me (which, I would have thought would have been the most pleasurable of experiences...you think you know someone).
Anyhow, if you get a chance, please stop by her blog and give her your thoughts, encouragement and suggestions. Oh, and remind her what a great guy I am.
Saturday, December 26, 2009
I wish I could write more often; I should write more often. But I can only do what I can do. As I have done once before (and am sure I will do again), here are a few tidbits from the past few weeks, both related and unrelated to our autism work --- because it all relates, doesn't it?
- Our new business is forming nicely! I'm just waiting for the VT tax department to get back with me on a couple questions, and I need to finish designing one form on my end. I have a meeting with BROC Micro-business --- a free, community-based service in our city which helps new entrepreneurs --- on January 7. If this all works out (and it has to), in the end it will mean much more time to spend with the family. God knows, Lori could use the help! How do you manage work and therapies?
- Speaking of Lori, she'll be starting college in the summer. She'll attend the Community College of Vermont and is looking to concentrate on Pediatric Physical Therapy. Has dealing with autism inspired you in any way?
- I published an article on Associated Content in opposition to our state Medicaid department making the unilateral decision to reduce Nolan's coverage. Since our local papers wouldn't print it, I took it online. One reader was prolific in her comments, and feels that my opposition is counter to the best interests of Nolan. I tried to explain the crux of the article regards the state agency making an unqualified reduction. The commenter implied that, regardless of the entity making the decision, we are using our therapists as a crutch. Please slide over to the article and post your comments. I value your opinions.
- We wrote a 4-page letter to the state, requesting they reconsider the above decision. Surprisingly, a week later they wrote back that they had, and his services are once-again covered to an acceptable level. Tell us if you have ever had to battle with state agencies.
- Then, we found out from our private insurance company that they (the insurance company) should not have been covering Nolan's services based on his diagnosis. So, to make an already-frustrating situation even worse, I'll have to battle with them, along with my illiterate state legislature that doesn't believe autism should be covered by insurance. Does your state require insurance companies to cover autism therapy services?
- (Downer Alert!) We found Christmas to be tough this year. As far as I'm concerned, Christmas in our house is about the kids. Lori and I like to give each other gifts, too. But as long as the kids get taken care of, and are excited Christmas morning, our job is done. Well this year we were looking for a great reaction from Nolan, based on some of the strides he has recently made. We'd hoped, anyhow. Instead, while his sisters eagerly tore open gifts and screeched happily, Nolan paced the house, covering his ears and making noises akin to Taz of Looney Tunes fame. He did play for hours with one of the toys we bought for him (an inflatable ball pit with a tower and "ball" waterfall), but somehow, it just wasn't the same. My good friend Deanna, who is always the most wonderful voice of support, encouraged on Twitter, "you may have a long way to go, but remember the journey is worth it. Sometimes hard to do, I know...". You can say that again, Deanna! Tell us about times the frustrastration that can be associated with autism has affected your family and how you have coped.
Tuesday, December 1, 2009
Saturday, November 28, 2009
I want to apologize to all of you that I must now moderate the comments you post. I recently received a post from someone who was less than respectful to all of you. While I believe that thought provoking, challenging debates are healthy for our community, I do not have to tolderate abusive language or belittling comments. To those of you who share differing opinions in a respectful and fair manner, thanks for that and please continue to do so. You make us all the better for it.
That said, please click here to return to our current discussion, or here if you are new to Same Child, Different Day and want to start at the beginning.
Thanks and have a nice evening.
Friday, November 27, 2009
You can believe in cures or not, or you can subscribe to the thought that they simply are who they are. When we say we are willing to advocate for our kids, what do we really mean?
Well, a Rhode Island mom has chosen to go to what others might consider extreme lengths to manage her child's condition. Marie Myung-Ok Lee has helped her son to become the youngest recipient of a medical marijuana license. She first purchased THC-infused olive oil to make cookies for her son, in an effort to stave off his biting and pervasive violent behavior.
Myung-Ok Lee swears this is helping her son and that this is just the intervention he needed.
What is your take on this mother and her radical approach? Is this curing or simply sedating?To what extreme lengths would you go, have you gone or are you considering?
Please share your thoughts and feelings.
Sunday, November 15, 2009
Saturday, November 14, 2009
Wednesday, November 11, 2009
Good first step, right? Yeah, well...
...seems the school board has decided to REINSTATE this dummy and relocate her to sixth grade. Yeah, that'll help.
This stupidhead is still being allowed to teach because she has tenure, and doesn't see the error of her ways. And the school board was freaking unanimous in their decision to let her back on board. Can you believe it?
So, you have a six year old kid in your class who is disruptive of the other kids, and you ask them to vote on whether or not the child should be allowed to stay in. No parental involvement. You don't ask the school clinician. The principal isn't brought on board. You just arbitrarily ask your students to make the decision. I'm sorry but, who is this moron?
If the kid was a distraction because of his clothing, or wheelchair, or burn scars, or speech impediment, or --- God forbid --- skin color, would this teacher have committed the same moronic decision? Hard to say, since it happened once with this child. But I guess worse than her choice was the choice of the school board to --- again I say --- unanimously decide that, sure, she's a great teacher and should be allowed to traipse back into a classroom and be allowed to wield her judgemental opinions on any child that happens through the door.
All this after a judge upheld her loss of tenure! Woe unto any child who doesn't fit this anus' mold (if you can't tell, she's pissed me off). And "teacher"? What is it that she teaches her students? Intolerance? Judgement? Discrimination? Stupidity? The voting process?
Please link this story, post about it, make it known, Tweet and Retweet it...Email (you can get a list of departments by clicking here) or phone the Port St. Lucie school board (772-340-7100 by the way).
Please sound off...let me know what you think! And I'll link your stories back here if you post them, k?
Thanks for indulging me.
Sunday, November 1, 2009
Tuesday, October 20, 2009
I'll keep you posted.
Wednesday, October 14, 2009
It would seem that today our State medicaid office has decided that Nolan has received all the speech therapies he needs for 2009. Because we have private insurance through my work as well, they feel they have been providing him more services than he's entitled to.
In order to make things fair for him and all the rest of the recipients of speech services (regardless of need or cause), one Medicaid representative (I'll keep her name to myself for the time being) has made the unilateral decision to yank our son's services away from him. These are services he has been getting for two years now, and because the therapies have been "prolonged" in their words (and because we parents have been thoroughly trained in the therapy process), we can now stop being parents and take over as his therapists, utilizing the school-trained therapists (who get paid to do this) for guidance.
Some soulless, anonymous asshat in a, barren, similarly soulless office has decided that all children who receive therapy services need the same amount and quality of services, and once a limit has been reached, said services are withdrawn by the bureaucracy. I'm all about saving money. But just because my health insurer is providing a degree of coverage, should Medicaid stop covering the remainder because it's not fair to everyone else?
Anyhow, I could go on here forever, but I have an article to write. It's one of the things I'm good at. Oh, I'll remain objective and fair, and I will keep much of my emotion in check (just to make it a balanced report). But I have to take a little time away from SCDD.
Just because I'm taking leave for a couple weeks or so, doesn't mean you should stop commenting. I need your feedback and input. Please. Keep commenting and I'll keep checking; I just won't be posting for a bit. So here I go, off to the paper-and-ink pages.
Sunday, October 11, 2009
Hope to see you there.
Tuesday, September 29, 2009
Today however, I was inspired to talk about something I know many of us have dealt with and others have written about as well --- that is the insensitive, uninformed (I was going to say “ignorant”, but I won’t say “ignorant”, because “ignorant” would be too harsh --- I mean, you can say “ignorant” if you choose, and that’s you --- fine by me, it is a fine word and all; I just choose not to use the word “ignorant” as a personal preference) things people say to us when it comes to our autistic kids.
A little while ago I touched on this issue and would like to go into it a little more. I’ve compiled a little list that I have either heard, vetted from the Internet or that we have had said directly to us. When I’ve seen/heard responses to many of these comments, the retorts from the affected families are sometimes snappy and often sarcastic. Usually the implication is “this is what I would have/wish I could have said.”
So I’m going to add another approach.
I’d first like to suggest some serious, non-biting responses, to insensitive (or even dumb), and sometimes just plain old “uninformed” things you may hear. Since it’s far more fun, however, to use those snippy-snappy replies, I’ve included somewhat more “creative” responses, too, just in case that’s how you roll:
The Comment: “Well, in today’s day and age, that’s the behavior you have to expect when you don’t spank your kids.”
Suggested Response: “We’ve actually tried nearly every form of discipline anyone has ever thought up to control his behaviors. We’ve learned through trial and error, and trying to figure out what’s causing the melt-downs, that these are not behaviors of a ‘kid being bad’. He’s hypersensitive.”
What I’d Like to Say: “Thanks for the advice, Professor. Why don’t I leave him with you for a week (or even a day) and we’ll see if you can knock the autism out of him.”
The Comment: “That’s the behavior of an abused child acting out.”
Suggested Response: “And to think, yesterday, some lady told me I don’t spank him enough. While abuse can happen in homes of special needs children (as it can in any home, I guess), I take him to so many therapies and doctor appointments, I assure you I would not want to add the need for another clinic visit.”
What I’d Like to Say: “And to think, yesterday, some lady told me I don’t spank him enough. Seriously, please call DCF, or the Police or any other agency --- and ask them if they could please bring a behaviorist or Personal Care Attendant with them. I’m having a hell of a time getting the State and my insurance to pay for them.”
The Comment: “Well then, why can’t you just control your child? Can’t you just make her stop?”
Suggested Response: “I wish!”
What I’d Like to Say: “I wish!”
The Comment: “If he’s talking, are you sure he has autism?”
Suggested Response: “Autism is a spectrum disorder. That means it comes in as many flavors as there are persons afflicted with it. Some kids talk, some do not.”
What I’d Like to Say: “Talking? Lady, all he’s doing is quoting every line from the new Blues Clues DVD we just bought. Incessantly. Loudly. And to answer your question: Yeah, I’m pretty sure he has autism.”
The Comment: “Well, remember that God never gives you more than you can handle.”
Suggested Response: No suggestion. I think walking away is your best answer to this one. However, if you must respond…
What I’d Like to Say: “Bi... --- I mean ma’am, at this point, unless you'd like me to show you what I really can handle, I’m going to have to ask you to please remove yourself to your automobile and leave the area quickly.”
The Comment: “Some kids are late bloomers. There are lots of cases where kids don’t talk at four years old.”
Suggested Response: “Ma’am, my child has been tested and re-tested. His hearing has been checked and he has a speech therapist. While I appreciate that you are trying to reassure me, we have been working on this for two years now.”
What I’d Like to Say: “Do those same kids continually hand-flap, chew their sleeves, babble uncontrollably, melt down in a kiddie playground, beat on the windows and purposely injure themselves on a daily basis, too?”
The Comment: “Autism, huh? So that means he’s a genius like Rainman.”
Suggested Response: “While savants do exist, they make up approximately 1% of all people diagnosed with autism. Nope, he’s just a regular little boy.”
What I’d Like to Say: “Potato Chips in your shopping cart, huh? Bet your cholesterol is through the freaking roof.”
The Comment: “He doesn’t look disabled.”
Suggested Response: “He is.”
What I’d Like to Say: “Would you like me to hang a ‘handicapped’ sign around his neck and push him in a wheelchair? Up until you opened your mouth, you didn’t look ignorant.”
The Comment: “If it helps any, I have a friend at work that has an autistic nephew. So I understand what you’re going through."
Suggested Response: “I sincerely appreciate that you are trying to relate to me. I don’t say this to be rude, but you honestly do not understand at all what my family is going through.”
What I’d Like to Say: “Great! Then that means you have experience. I’ll expect you at my house tonight at 8 to babysit.”
The Comment: “‘Famous Celebrity A’ says that you should try ‘XYZ’ diet/therapy.”
Suggested Response: “Thanks for the suggestion.”
What I’d Like to Say: “‘Famous Celebrity A’ has unlimited time, money and resources to try any and every snake oil diet/therapy that comes back in Google results. Unfortunately our insurance will only cover certain things, if anything at all. If you can give me some money, your time, and a team of nannies, I’ll try whatever you suggest.”
The Comment: “Gosh, I don’t know how you do it.”
Suggested Response: “It’s all we’ve ever known, so it’s typical for us.”
What I’d Like to Say: Nothing funny about this. The Suggested Response says it best.
The Comment: “Aren’t you just using his autism as an excuse for his behavior?”
Suggested Response: “Actually, his behavior is a symptom of his autism. He has not control over it.”
What I’d Like to Say: “If it will get this conversation over with sooner, then the answer is ‘Yes’.”
The Comment: “Honestly, how hard could raising him really be?”
What I’d Like to Say: “You can take him for the day, if you’d like to know.”
Suggested Response: “Not as hard as it is for him to have to live with it.”
Friday, September 25, 2009
Sunday, September 20, 2009
As your respectful children stood beside you in silence, you wondered when he would just be quiet. And you wondered what kind of mother she must be. If you only knew what that mom wonders.
She wonders what she can do to get him to stop screaming. Sometimes it lasts all day, and lately, it's been almost every day. Then, while you put your kids back in the car, she wonders if he'll keep his seat belt on for the entire ride. You will get them home and they'll head right upstairs to play together nicely. She wonders if he'll decide it's time to begin switching the lights on and off repeatedly, or throw to everything that's on the desk onto the floor.
When your kids fall down, you can ask them where it hurts and they can tell you. It hurts the other mom that all she can do is hold her little boy and wonder when he'll stop crying. Later, while you wonder what story you will read to your child tonight, the mom you know nothing about will once again cry herself to sleep in her husband's arms.
You wonder later why God would give any child to "that kind" of parent, yet she's thankful that God chose her. You judge the stranger based on that one incident, while she wonders why you didn't just ask if you could help. She probably wouldn't have taken it, but she would have appreciated the gesture.
Your four-year-old has mastered the art of conversation. She finds it triumphant that her son mumbles, "go school" and "want eat." You already wonder what your child's high school prom will be like. Meanwhile the other mom wonders when her four-year-old will potty train. You wonder who your little one will marry some day, while the mom with the rambunctious son worries that he may not graduate from high school. You plan to send your child to the best university, and the lady that you never met wonders if she'll have to care for hers as an adult.
While she's not jealous that your kids obey, talk and dream, she does wonder what it would be like to be able to call her son "normal." He is who he is. There's no altering that, and his mother wouldn't change him for the world. But feeling your eyes burn through her melts her soul. She does the best he can, and wonders why you judge them both. She doesn't ask for your sympathy, just your understanding.
Her family puts a lot of time and effort into helping him become the best somebody he can be. You don't see it, but that's all right, because his mom sees it every day. She sees the victories as well as the defeats. You cast your judgment based on the one day you saw the unruly child in public. No one faults you for that, because the other mom used to do the same thing, back before her son's diagnosis. All the mom asks of you today is compassion and consideration.
Tonight, when you tuck your kids into bed, be thankful for the children you have and for who they are. Understand that, while you are getting butterfly kisses from your little angel, there are parents wondering when theirs will be able to say the words, 'I love you.'"
Friday, September 4, 2009
Tuesday, September 1, 2009
- I saw this great article in our local news today, and I'm glad the outcome was positive. If anyone finds out who these parents are, I would love to talk with them respectfully about the experience.
- Our monthly meet-ups for Exceptional Parents of Exceptional Children --- the support group I co-chair --- are back from their summer hiatus. You can read about our group here and about or visit our blog site here.
- Nolan and I had a wonderful connection recently. As you know, many autistics are not good at communicating affection. Well, the other day as The Boy climbed the steps of the mini-bus, he shrugged off his backpack and headed down the aisle. Then, in an unsolicited, unexpected moment, he turned back up the walkway, murmured "head butt" to me (our 'little thing'), and then put his head on my cheek, grabbed my neck and squeezed. Then just as quickly, he let go and without looking back, sat in his seat for the ride to school. I was speechless and it was awesome!
Just thought I'd share these little bits with you.
Have a great day,
Thursday, August 20, 2009
Sunday, August 2, 2009
- The booklet is a nice, compact manual that shares some of my family's anecdotes of what has happened during our son's first year after he was diagnosed with autism. So much more has happened since that first year, but our initial experiences are the focus of this booklet
- This autism reference booklet lead to the start of Rutland, Vermont's now-annual "Celebrate the Spectrum", a month-long series of events throughout April, which you may know is National Autism Awareness Month --- which in turn lead to the enhancement of Rutland's Exceptional Parents of Exceptional Children (EPEC), our own local autism support and awareness organization
- And there is so much more!
For that reason I have said in the past that we can forgive ourselves if, every once in a while, we say we wish our kids were "normal" (labeled "nero-typical" for political correctness). We can forgive ourselves for the thought slipping through every so often that we wish things were different. I'm not saying that we want our kids to be anyone other than who they are today; instead that it's okay if we think about what might have been, if just every once in a while.
Today Nolan was having an especially hard day. He had been whining for much of the morning and afternoon. Later, when he woke from a nap, he was crying incessantly and without reason --- that is, without a reason we could conjure up. No amount of DVD or computer time seemed to help.
I hope its just because I was frustrated for him not at him, but I actually uttered a phrase I have yet even so much as thought up to this point. Without mulling it over for the briefest of seconds, I said aloud to my son, "Can't you just NOT have autism?"
The sound froze in my ears. I mean, I wasn't making a true wish, no rubbing of lamps or upon falling stars. I didn't even expect a magical, glittery transformation or the crescendo of a chorus. But I honestly doubt at that moment that I had spoken the words as a prayer for my son's relief. Instead, I'm positive that at that specific juncture in the space-time continuum, right then and there, I was honestly speaking for my own selfish desire. I meant the utterance for my own satisfaction, a request bourne solely for my own need and want.
I don't know that it was okay for me to say it, to say that sequence of words strung together that ended up forming an impossible plea. I will have to be the one to battle with the appriopriateness of that sentence.
In retrospect, I am not the one battling with the unwanted sentence in the first place.
Wednesday, July 29, 2009
When getting the kids together in the morning, I admit that either a SpongeBob Squarepants, Dora the Explorer or Blues Clues DVD will be playing in the background. It's a battle we've decided is better "lost" than challenged while trying to give meds, brush teeth and everything else involved in trying to get a couple of high maintenance kids together for school. Anything we can to to make the process as emotionless as possible --- for us --- is a good thing.
This morning we were on an episode of the square sponge of which Nolan is not especially fond. He knows about "skipping" the episodes and ran to grab the remote. Practiced as we are at this game, it was a no-brainer what he was asking, and we attempted to move the episode along. Several presses of the remote met with no results, and Nolan became visibly upset.
He began to whine and repeated "skip, skip" in his own pronunciation. We thought to change the batteries, hoping that would do the trick.
We've just moved and our house is still yet to be fully unpacked. So, finding a set of small triple-A batteries hidden amongst the boxes labeled "Kitchen", "Kids Stuff" and "Your Guess is as Good as Mine" was a near impossibility. We were fortunate however and snuck some out of a small, light-up fan we had just bought him.
By now he was melting down, giving a crying fit that no parent wants a child to suffer before school. But he's yet to learn patience or the limitations of something that's broken. It has worked every other time without incident, so why not today, People?
We opened the remote and realized right away that no amount of changed batteries would do anything to help the situation. Tipping the remote upside-down, a small amount of moisture/water/some unknown liquid trickled from the hand held and onto the entertainment center. Oh happy day! We tried, but the batteries just ended up getting wet.
Nolan's meltdown now in high gear, we realized the only remedy would be another DVD, and fast. We popped out SpongeBob and slipped in a Looney Toons collection. It worked, and fortunately the bus was less than two episodes away. Nolan calmed down and all was quiet on the homefront.
It would be better if we could get the mornings going without movies altogether. But we're willing to accept that there are other places we can put our collective foot down. Morning just isn't that place.
Thursday, July 23, 2009
You, too have experienced so much in dealing with ASD's, that I would love to hear from you, as well. And I'd love for you to share your thoughts and experiences with all of us, with the ultimate goal of telling the world what we have to say.
If you are comfortable with it, and in your "spare" time, please feel free to comment below or email me with your own "Spectrum" stories. Not as an invasion of privacy or morbid voyeurism; rather this is a chance to celebrate your loved ones and show them off in front of the world! Parents love to brag about their kids and now's your chance.
Share something funny, something frustrating, something prideful or something quirky. Did you have an awkward but amusing run-in in public? Maybe we did, too! Does your loved one living with autism have a funny trait? No need to be embarrassed or devastated by it; brag about it now! Here's your chance to tell everyone how frustrating that stim is, while at the same time admitting that you have laughed about it behind closed doors. I am not asking any of us to make fun of our loved ones --- oh goodness, no! Instead this is an opportunity to include them in mainstream life --- a chance to show off the fact that, just as they are as different as chocolate and vanilla, they are equally just like everyone else.
And if sharing your name is an awkward proposition, no worries! If you ask me to, I'll honor your request for confidentiality and anonymity. Just keep in mind that the final intent is to present your snippets in print.
I have a saying: "Doctors keep people alive, but storytellers keep CIVILIZATIONS alive." I think there's a message there somewhere. Anyhow...
...thanks a lot and Happy Storytelling.
Monday, July 13, 2009
I look forward to your honest critiques and comments. You can email me privately at firstname.lastname@example.org, or you can post a comment below. Either way --- and as long as you let us --- your opinions will be shared with the other readers.
But I have a deeper purpose than just comments on a blog: this is one leg of a multi-faceted marketing survey. I have bigger intentions for the booklet, and you my friends (and of course, your helpful words) are one piece to that plan.
So, if you've gotten the free autism support guide Same Child, Different Day, then I'm calling in your chips, as it were. Please email me or comment below when you can. I'm looking for honest opinions, suggestions, things you were satisfied with, something there should be more of, whatever there may have been too much of, or things that made you laugh or cry. I'll read all your comments and emails, then decide next which direction to take the resource.
If you haven't received a copy of Same Child, Different Day: One family's experiences during the first year after a child's autism diagnosis, you can still get one by ordering from the sidebar to the right. As before, first select from the drop-down the pricing based on the quantity you desire. You'll be able to select an exact amount when you get to the order page --- the price is $4.95 per copy or less, depending on the number you request.
Please let me know if I missed anything else.
Sunday, June 14, 2009
From Monday June 15 through Sunday, July 12 I'm offering free copies of Same Child, Different Day: One Family's experiences during the first year after a child's autism diagnosis. In return, I'd like your sincere evaluation of this autism booklet and your suggestions as to where it can be changed or improved. I'd like your supportive comments on how I can improve or grow the booklet. Over the past 10 months I've gotten some great feedback from families seeking autism support services, and I could use more.
I'm a glutton for constructive criticism, and would appreciate your honest, thoughtful, supportive input. In the end, I'll be able to decide what direction to take the third printing of the manual.
So for the next month, if you'd like to order single copies of Same Child, Different Day, please send an email to: email@example.com, and be sure to include all your contact information. Again, this is one copy of this autism booklet per household, and understand that I'll be nagging you for your feedback. Please keep in mind that if you are looking for more than one copy per mailing address, you'll still need to order from the sidebar to the right.
Also, so that I can keep this post at the top, I won't be adding another until after the 12th of July. Until then, send me an email for more information.
Wednesday, June 10, 2009
Your time as the parent of a child with special needs --- in this case, autism --- will mostly be devoid of "me time". So when you get free moments, take full advantage of them. It sounds so simple, yet it gets forgotten so easily. You can not take care of your child if you can't take care of you first.
You will feel guilty about it too; that's inevitable. But this chapter briefly lets you know that forgiveness of yourself above all others is paramount.
It's also useless to blame yourself for this sudden life-altering circumstance as well. Instead, celebrate the successes as they come. And remember, we're all here for you --- you are not alone and always have someone you can turn to. Always.
Wednesday, May 20, 2009
Let me know how you came upon the blog site for Same Child, Different Day; it's always fun to find out.
Also, I'm interested to know where you're from. It's interesting finding out what corners of the world our words are filling.
Finally, come back later and let me know what you think of the booklet; let others know as well. I'll take your words of encouragement and your critiques. Since Same Child, Different Day is for you, I can only make it better by hearing from you. And you'll be sharing your honest opinions with other readers. Besides, your opinions are less biased than mine.
Keep in mind that when you order, there is a drop-down for the price break-outs; select from the correct price group and you'll be given the opportunity to enter an exact quantity later. All the prices are in $US at this point - I don't have any way right now to accept foreign payments or convert foreign exchange. At this time I prefer and exclusively use PayPal. If you aren't comfortable ordering directly online (which is actually the most secure way you can go), PayPal provides a mountain of purchase options.
Anyhow, please keep reading and commenting and I'll keep trying to support you and make a difference in the lives of our special kids.
Sunday, May 10, 2009
Thursday, April 16, 2009
Tuesday, April 7, 2009
Monday, April 6, 2009
Thursday, April 2, 2009
I promised when I started this blog, that it would only be about Same Child, Different Day and anything that promotes, supports or supplements it. And I swore to myself I this wouldn't be a rant blog. I've had bad luck with that in the past so let's just say, I'll try to make this the only one of it's kind.
Jenny McCarthy has a son with autism; granted and my prayers to her. And she's found what she believes is a treatment that seems to have cured him, in her eyes; hallelujah and praise God. If it's true, nothing aside from the same happening to my own child would make me happier. But, for all the reporting outlets to have dubbed her the end-all and know-all when it comes to autism is finally getting to me. She purports herself to be a self-appointed autism advocate for parents, but I don't recall asking her to be my self-righteous martyr.
First and foremost, there are countless fantastic families and individuals who have done as much if not more where the diagnosis has touched them. But you don't hear about them because, unlike Ms. McCarty, they don't have piles of cash, unlimited free time or the benefit of celebrity to thrust them into the limelight. On the contrary: many have given up jobs and homes, to move in with family and devote all their time and money into caring for their child, because their state, insurance company or community won't or simply can't help them otherwise.
Also, Ms. McCarty has found apparent success with her son's particular issues. However, as my good friend Heidi is fond of saying: if you've seen one kid with autism, you've seen one kid with autism. What works for Jenny McCarty didn't work in our specific situation, and it may or may not work for you. But the celebrity community-at-large has embraced Jenny, and have chosen to utilize her as a resource for all things autism. That's an unhealthy route to take, when you consider she does have a specific agenda she's pushing, and knowing that not all of those affected by autism share the same beliefs.
Yet, Jenny McCarthy is called upon time and time again to answer every question that could be asked regarding autism. I'm not claiming that any other person would be better versed on the subject, especially not a school-trained stranger not living the autism maze. But there are other families experiencing this condition, parents who don't hold a narrow-minded focus or agenda. It's the way of our society: popularity is the biggest factor we use in determining the most qualified authority. Just once I'd like to see the news media call on a regular family with a typical laundry list of daily tasks, a reasonable income and no axe to grind.
Anyhow, I said I wouldn't rant, and I don't want to get all irrational and thoughtless. And I surely don't want to invalidate the struggle I'm sure Jenny goes through on a daily basis. No matter the degree, autism is a challenging, life-changing diagnosis. I just wish society had chosen a more appropriate representative.
To make folks aware of this month's activities, my EPEC co-chair (Heidi) and I set out on two radio interviews: one locally with our most popular radio station (Mix 98.1/WJJR) and a smaller, independent station in our queen city of Burlington (105.9/The Radiator). On separate occasions Heidi and I have both been on the program (The Next Frontier) with the host Anne Barbano, who also produced a wonderful video called "Living the Autism Maze" (check it out here).
Tuesday, March 31, 2009
Tuesday, March 24, 2009
The chapter offers some suggestions and insight, and shares an anecdote aptly titled Dread Time. I even talk about melatonin, a product that we have had success with in getting Nolan to sleep, though your results will most likely be different. We always recommend you speak with your medical professionals before undertaking any medicine or supplement. And just a note: the melatonin helps him get to sleep, but does not necessarily keep him that way!
Sunday, March 15, 2009
Wednesday, February 11, 2009
However, our January 14, 2009 show to talk about the booklet did not record; can you believe it? Anne was nice enough to put a little blurb about it, with a link to this site, but it would have been wonderful to be able to provide you with the listening link here.
No matter, if you'd like to talk about the show, writing booklets, or anything autism-related, please drop me a line.
Friday, January 23, 2009
In addition, do all of your shopping through their online shopping mall, GoodShop.com, where you can shop at more than 900 top online retailers and a percentage of your purchases will go to the charity or school of your choice. You pay the same price as you normally would, but a donation goes to your cause!
Here's the web site — http://www.goodsearch.com/. You can also read about GoodSearch in the NY Times, Oprah Magazine, CNN, ABC News and the Wall Street Journal.
Wednesday, January 14, 2009
~ 1) I had a radio interview today to talk about Same Child, Different Day. When the stream is up on the host's website, I'll post the link and details from the show. But for now, you can click here to get more info about the host Anne Barbano and "Living the Autism Maze", and check out the eclectic little commercial-free Vermont community radio station here: 105.9 = The Radiator.
~ 2) I've posted a place in the sidebar where you can buy copies of Same Child, Different Day through PayPal.
Monday, January 12, 2009
The Same Child, Different Day chapter entitled "Now That You Have a Diagnosis" shares a brief but practical road map of sorts, a kind of information booth with suggestions about where to start looking for services. I didn't go into great detail about any of the services available, as you'll likely want to start looking for assistance at your state level. But you are provided with key phrases to use in your search, information about local (voluntary) autism databases and a story about a single-mother friend who took the time to make sure her son is protected when she can't be available.
As always, if you want someone to talk to who's on the front lines, (we aren't doctors or professionals; just loving parents) please contact me. You can also email firstname.lastname@example.org if you'd like to order booklets for your group or organization.
We wish you all the best.
(Next chapter: "Now, About Those Lifestyle Changes")
Sunday, January 11, 2009
Apparently, Denis Leary of Rescue Me, and the voice of the saber-tooth tiger Diego in the Ice Age movies, has released a new book (Why We Suck: A Feel-Good Guide to Staying Fat, Loud, Lazy and Stupid), and it's causing some stir. Most specifically, Chapter 6 entitled "Autism Schmautism" has raised the ire of the autism community, and autism advocates like Jenny McCarthy and Holly Robinson Peete.
Since the October, 2008 release of quotes from his book, Leary has said the quotes were taken out of context but has apologized. Sort of. I won't get into the commentary here, but you can read my article over at Associated Content.
There. I feel better now.
Monday, January 5, 2009
Regardless, you will find people who look at Autistics (big "A") as a culture; a group of neuro-diversity advocates who strive to encourage society to accept them or their family members for who they are. These are generally higher functioning autistics who do not seek treatment or a cure; rather, they live for inclusion of autistics the way they are. That's not to in any way say this group is wrong. Instead, this is another facet of the condition for you to research and consider.
In this chapter the anecdote "Same Child, Different Day" explains how we came to the decision that, not only is Nolan the same child he was the day before his diagnosis, but that we were not going to treat him differently either. As the last sentence of the short story says: "We refuse to let his condition cripple him and decided not long ago that he will graduate from high school; in that way, he's no different from his siblings."
One thing though: we didn't want this booklet to be clinical or dry. On the contrary; I try to keep you entertained throughout. But as with any good self-help manual, it's nice to have a glossary of terms; something to explain some of the concepts you just might come in contact with. What a coincidence: I included that here as well!
In the most formal part of the booklet, I have listed a few definitions for many terms you may encounter. From ABA (Applied Behavioral Analysis) to Thiomersal (or Thimerisal), there are explanations to nearly 30 of these concepts, and I hope they shed some light.
In fact, I hope you find that the entire booklet sheds some light for you. But if you still have questions or to order bulk copies, please email me.