CareGiver360 was created by Ken Ziel, a Colorado father whose son has a range of developmental and physical disabilities. Ziel was inspired to create CareGiver360 from his experiences raising a son with an array of special needs and trying to communicate all of those needs to multiple care providers.

“When providers left or new providers came in, I could see that the process of being brought up to speed and adapting to new procedures was just as hard on the caregivers as it was on me and (my son) Austin,” Ziel said.

Caregivers can also use the tool to streamline updates in care procedures, treatments and conditions.

CareGiver360 creates “care guides” tailored to the unique needs of those receiving long-term care, and streamlines and safeguards critical information to caregivers. Families are able to share a record of a loved one’s care, condition and personal preferences. New care providers can use the guide to become familiar with their care recipient.

The idea came one evening after Ziel and his wife left Austin with a caregiver to go see a movie. “The amount of time it took to go over all of Austin’s care instructions with the caregiver, and the anxiety it caused my wife and me, was incredible,” Ziel says.

***

The National Autism Association provides relationship-coaching tools at no charge to qualifying couples who have a child with autism.  Couples in need will receive a book and DVD presentation at no charge. To qualify, couples that have a child with autism should write to lori@nationalautism.org outlining their special circumstance. Qualifying couples will then receive both the book and DVD in the mail. Lifetime partners that have a child with autism also qualify. Counseling funds are also available through Family First. To apply for a $500 grant towards marriage counseling, couples can visit www.nationalautismassociation.org/familyfirst.php.

Image by Photo by Me-Liss-A (flickr.com)

This question posted to the forums: “What’s the smartest thing anyone ever said to you about your autistic child?”

Said one respondent who’s 3-year-old daughter was diagnosed two years ago, “She is progessing well and although she still shows signs of autism on a daily basis, my wife and I sometimes question the early diagnoses.  With that said, someone once told us that whether it is autism or not, she still has some developemental issues which need to be addressed.  ‘Concentrate on those things as opposed to getting all hung up on the bigger autism diagnoses.’  This comment helped us do just that and feel as though it provided a bit more focuse on her treatment moving forward.”

“Once our now-17 year-old son was diagnosed with autism one of the doctors who saw him said that if he wanted to do something, he would do it,” said another. “The secret was in motivating him to want to do it. I never forgot that and it was so true. It may sound trite, however, I was coming from a place in my mind that said you can’t reach
people with autism (and I) learned that oh yes you can!”

Another was once at an autism conference with a fabulous keynote speaker.  “She was an ABA specialist and author and had worked with numerous kids over the years.  She said that every time we take our kids out in public we need to remember all the eyes that are watching us.  Not in a negative way, like we’d better be perfect in all we do or else.  But she said that sometimes it’s more important to consider the impact and impressions we leave on others than to work on every single behavior our kid is exhibiting.  As people see us, they see how we value our child; how we respect him
as an individual and his inherent worth to us and society.  As others see how we value him, that directly affects how they see people with autism and disabilities in general. I try to be more aware of my interactions with my son in public, not just for his benefit, but also to teach others around us. For example, if he’s noisy or having a hard time staying calm somewhere, I normally try to speak to him calmly to defuse things.  In public, I also try to narrate and
explain his feelings and the reasons for the behaviors, allowing others to overhear so they can understand.  Hopefully, the next time the other people near us see someone in a similar situation, they would remember and understand, say, that maybe he’s just tired today or he’s feeling a bit stressed.  It’s better than just seeing
someone that seems strange and maybe a bit scary and not knowing why.”

And the smartest thing said to this respondent: “‘So, now you know. Make the best of your knowledge.  It is a blessing if you treat it as such.’”

My own smart comment came from a doctor, said to Jill way back in the hospital when Alex was just a year old: “‘Life isn’t a matter of having a good hand. It’s a matter of playing well the cards you’re dealt.’”

***

LinkedIn’s groups are excellent places to pick up advice and contacts professional and otherwise. I’m a member of Autism Advocates, Linked to Autism, Autism Speaks, Parents With Patience, Autism Advocacy, Special Education Innovators, and Special Olympics, among others.

Gov. Sarah Palin was in town this past weekend for the Autism Speaks walk in New York. I’m not pleased she participated even though her nephew is on the spectrum. I’m afraid I can’t separate my politics and feelings about Palin from her supportive appearance in an organization I believe in. Her record of public service has been so clouded with dishonesty and mistrust that she doesn’t seem able to make the simplest gesture without a clownish response from the public.

Huffington Post weighed in on her speech with a query about her toe nails. Youtube is down so I can’t put in a link to her speech - if you search it comes up right away. I hope to listen to it later.

well.... what IS painted on them?

Even without the toenails and the Letterman jokes (why couldn’t she just ignore those?), it’s impossible for me to see her involvement as anything but a calculated campaign move. Palin concerned about families affected by autism? Please. Palin concerned about 2012.

*   *   *

He’s no Madoff — it’s only about $6 milion — but Matthew Weitzman has been helping himself to clients’ funds. I was particularly disturbed the elderly couple with diminished mental capacity — and the thought that there must be other clients with developmental issues.

New Jersey legislators are proposing a bill that would make it mandatory for insurance companies to cover treatments for individuals with autism. New York has already proposed reforms that would require private health insurance companies to pay for screening, diagnosis, testing and treatment, up to $36,000 a year. Connecticut has already passed legislation.

*   *   *

Photo courtesy of jimbowen030 (flickr.com)

NPR just ran an interview with Karl Taro Greenfeld that discusses his new book, “Boy Alone: A Brother’s Memoir.” Of particular interest to me are the comments that are posted. Most are supportive; several are sharply critical of Greenfeld for what they see as his selfishness and lack of empathy. I can’t help thinking what Ned might say if he writes a memoir one day. Will he say with resentment that his childhood was absorbed by a family that revolved only around Alex?

I found out about the interview (and book) from an email sent by someone at AHRC, the agency that deals out many services to Alex. The woman who runs their sib shops, which Ned attends (and seems to really like going to). I can’t say definitely this will be enough for Ned, but it’s a start. I’m glad they exist; I’m glad they exist for Ned. I think Karl Greenfeld’s life must have been unimaginably difficult, and I think he has written a brave, unflinching memoir that will be difficult for me to read. But it is now on my list.

If I had a nickle for every time it would’ve been nice in the last 10 years to talk to somebody who just plain understood, I wouldn’t be worried about being laid off.

Image: Flickr.com

Sandy Knollman, of the Comforting Ties Autism Support Group, offers these tips for starting and maintaining a group:

Q: Tell us a little about your group.

SK: It started in October 2008, and its first meeting was in December 2008. Members are parents, family members, educators, and some providers. The subjects are varied, but last month’s focus was education and making
it through the sometimes complicated school systems. I also passed out printouts of articles that I had found and that my friend Connie had found, and I gave information about Medicaid waivers available through the state of Kentucky, since that’s where most of the members are from. I also brought a copy of the Autism Speaks 100 Days Kit, as well as the University of Louisville’s Kentucky Autism Training Center Kentucky Family Guide to Autism Spectrum Disorders. The meetings are the first Monday of every month, 6 to 8 p.m.. The location varies, but we’re hoping to have a permanent meeting place once we get the autism resource center opened.

Q: How do you spread word of your group?

SK: By word of mouth, and announcements to local schools/family centers. Info is also listed on the Autism Speaks support group list, and on the Kentucky Autism Training Center’s listserv. Also, if someone asks me about autism, I always include that I run a support group and plan on opening an autism resource center.

Q: What’s the easiest thing about starting a group?

SK: Knowing and feeling like it’s the right thing to do, and knowing there’s a need for it in this area. I’m not afraid of putting myself out there; if you’re a shy person, it may not work. I’m normally a shy person, but talking about autism and helping to educate others about it is a passion of mine.

Q: What’s the toughest thing?

SK: Being away from kids for that long. I work full-time, and I’m gone all day when I have the support group meetings. (My schedule) is crazy, but so worth it! For the first time in a really long time, I finally feel like I’m doing what I was meant to do.

Q: Any words of advice for those looking to start their own support groups?

SK: Start small. Don’t try to make it too big from the get-go. If you do, you will burn out and the group will fizzle as fast as you do. Also, be passionate and willing to get calls and e-mails from people you don’t know. Also, talk to people about it. You never know when someone might know someone else that needs your group. You may want to provide refreshments. I started off bringing everything myself, but eventually someone else will volunteer to bring something and be willing to take the load (and cost) off you. Now, my
friend Connie makes some snacks to bring, and since my husband is a chef he makes an appetizer or two. I even had my boss make a cheesecake one time. Since the meeting time is 6 p.m., I don’t want people to be hungry. For
morning meetings, you may want to provide some muffins or granola bars and fruit. Something relatively cheap but also nutritious.

For more information, contact comfortingties@yahoo.com.

***

Blue Cross Blue Shield of Michigan plans to offer coverage of some autism treatments.

I picked up some great homework tips after my talk earlier this week at the YAI Conference in New York, (my topic: “Educating the Educators,” or how teachers can work with special-needs parents):

- When writing, let the student use bright-colored paper, such as yellow, pink, or orange. It improves concentration.

- Also when writing, let the student listen to music they’re well familiar with “and have listened to a thousand times.” In Alex’s case, this would be anything from “Elmo.” Also, it  improves the concentration, apparently, and helps makes writing come more naturally and fluidly.

- For math, use props student is familiar with. I’ve tried clothespins and Lego blocks, but one Alabama teacher who sat in on my session said I should use candy or pieces of food Alex is especially familiar with. I have considered having him count Saltines and letting him eat them when he gets the math problem right. She suggested pieces of his dinnertime hot dog.

My session in general, was a great chance to meet other teachers and parents. They loved the story of how Alex fooled Jill one night when she’d taken him into the bathroom to lecture him about bad behavior. She was holding the door closed; he wanted to open the door and leave. So while she read him a riot act, he got all demure and coaxed her into singing a clapping song he’d learned in school. She figured, great, I’ll sing too, and when she moved her hands to clap along, he grabbed the knob, opened the door, and fled.

I also found Prof. Pat Levy’s session interesting. She teaches education at Manhattanville College in White Plains, N.Y., and was lecturing yesterday on how teachers should keep careful records of all parent/teacher conferences. Interesting to hear the other side…

YAI is also establishing an online resources center, including Web-based video.

***

FUNDING FOR THERAPIES: For Jake’s Sake is a 501(c)3 charitable corporation, created to raise money and provide the funding for children with autism to access effective therapies they otherwise could not afford.

(Image Credit: YAI)

I was speaking last night to the director of the new YAI Autism Center, for which I’ve written two blogs. “Beautifully written,” the good doctor said of them, so naturally I thought he was a pretty sharp guy.

“I’m curious to see how the blog will develop,” he continued. “It seems that often when a center like ours has a blog, it finds itself having to take some stand. I was wondering what your views are?”

Oh. In the whole cause-of-autism thing? Yes.

I have no stand.  I usually answer that better minds than mine are working on this. Premature birth? Vaccines? Phases of the moon? All are good candidates. I’ve read up on the vaccine/mercury versus non-vaccine/mercury debate, most recently in Autism’s False Prophets, and I haven’t settled on either side. I am certain, however, that something’s responsible for Alex still liking “Elmo” and “Dragon Tales” at nearly age 11.

So I dredged what I could recall from Alex’s vaccination schedule from back when Bill Clinton was still president and Godzilla was the hot summer movie, but honestly, when your first baby lives in a plastic box and you must leave him in a hospital night after night and you still have what will be a full year ahead of you of more of the same, the shot slate doesn’t stick in your mind — especially if it’ll be a long time before you realize that slate’s potential importance.

I do know what side I fall on in the debate: on the side of not believing you have a lock on the whole truth, and not on the side of making death threats to those who publicly oppose your views. The unending ability of people in a terrifying situation to fragment, takes your breath away.

The doctor talked to me about the latest research and I agreed it sounded promising, and I assured him that if he stumbled across a cure I’d be one of the first in line. But, last I leaned on the crutch of the Layman Parent Writer:

“My opinion,” I said, ”is that I fear for Alex’s adulthood.” That certainly seemed to be something we agreed on.

***

Visit YAI’s Autism Center Community here.

“Toddler Brain Difference Linked to Autism,” from CNN.

Researchers find first common autism gene, from Reuters.

(Image: taoism.about.com)

The Interactive Autism Network (IAN) Project has released its Parental Depression History Questionnaire, in which parents share “their experiences of the challenges involved with raising a child on the autism spectrum.”

Part one of the report explores “stress associated with child-focused issues, such as challenging behaviors and erratic sleep habits.” Part 2 will address additional issues, such as the impact on finances or marital relationships.

I haven’t read the report — I’d like to, in the same way traumatized Vietnam vets wanted to see Platoon — but I have a feeling it reads like a template for a lot of lives.

“For many families,” the report opens, ”the experience of raising a child with an ASD begins with a feeling that something is not quite right. Perhaps during infancy, the child seems to be behind in development …” (”Jeff… he doesn’t look at me.”) “Eventually, as the feeling grows stronger, the family may seek a diagnosis to explain the child’s emerging, more pronounced autistic behavior.” Oh yeah, the doctor with the dolls, who didn’t take insurance.

“Whether the diagnosis comes earlier … or later … chances are the family is already under considerable stress. No aspect of family functioning is unaffected.”

Sounds spot-on so far. Autism jerks every aspect of our life like fish jerking a line.

The report (findings are still listed as preliminary) cover child behaviors such as meltdown and aggression; parent self-esteem and feelings of competency (I take the silent, seething, knitted-brow approach to such moments, and one teacher surveyed said her parenting experience “has completely blown my confidence” as a professional); improvement of behavior over time; “other people and their lack of understanding” (how long is this report?); sleep disruption and its exacerbation of stress (“well over 50% of the problem, I think,” said one mother, and “it’s literally killing my family” said another parent); and treatment issues.

“I am so tired,” concluded one parent, “of fighting.”

The report is well worth reading.

Image: IAN

Reader Laura (the autismfromtheoutside blog) wrote in response to “Work It Out”: “What do you see in his future? Helping sorting in school cafeteria, hanging clothes as a local store, watering plants at a nursery.” She mentions these are jobs she’s seen students trained for, and they all sound pretty good to me for Alex. (Of course, I just got laid off, and they sound pretty good for me, too.)

I remember watching Alex in the isolette after his premature birth (21 ounces, 27 weeks’ G), watching him grip the breathing tube in his silent, tiny determination to some day pull it from his own throat — which he did, more than once, and sometimes before he was ready. Doing something before you’re ready has always been to me a sign of a good spirit. Alex’s, what should I call them?, internal resources have developed a lot over the past year: concentrating on homework, picking up around the house, remembering the precise location of some fun store he’s visited only once. Says Jill, “There’s not nothing going on in there.”

My problem is not what he can do, but what I’m afraid I can’t do. I watched Alex a few months ago, for instance, as he struggled to finish the tougher levels of an IQ test. He pieced together the puzzle smoothly when the solution called for using four and six pieces, for instance, but I could see his progress wind down like an old clock at the eight- and 12-piece levels. To be honest, I couldn’t have quickly done the 12-piecer, either.) Stalled, he looked away, but still he sat there. Then he looked back at the puzzle, touched a piece, looked away, sat in front of the damned puzzle with a look of defeat that probably felt as good in his throat as that air tube.
But here’s the thing: He realized he’d hit a wall, and didn’t like it. A big part of the workworld is like that, and an equally big part is moving on and up (tell me about it). Obviously he’ll do that puzzle someday. Somehow, as long as it never cuts into how much I believe in him, I think that my current fear buys him the ability to do that. It’s a cheap price to pay.
The NYC agency YAI has a new online autism community, and they let me do one of their first blogs. See it and their new community at http://www.yaiautismcommunity.org/blog/

What threw me about Alex at last spring’s Passover in our home was his behavior a year before: He didn’t exactly sit with us, but he hung around the table and seemed to want to participate, flirted with asking the questions and delighted, of course, at the presents at night’s end.

So last year? He wouldn’t leave the TV, and wouldn’t even keep it turned down. He refused to come to the table, refused to join in at all. I’m not Jewish, but Jill is and so was everybody else there, about six guests.

Though it’s absolutely always my last resort, I saw it as my job to take him out, much as I would’ve if he’d been disturbing people too much in a restaurant. I hesitated to surrender Passover 2008 to autism, but I also thought of it as a duty to my guests. I was the only non-Jewish celebrant.

He and I had a good time at a coffee shop, where Alex scarfed his chicken and ate all his ice cream. I had a cheeseburger. Delicious, but not the meal either of us should have been having. “Next year, Alex, we won’t do this.”

If this year isn’t different, it won’t be Jill’s fault. “Passover is about the kids,” she’s maintaining in the same tone of voice she gets when she’s determined to pick up the bedroom, the same tone she used when she knew what was right about his medical care, the same tone she used when she knew we’d found Alex the right kindergarten teacher. Passover IS all about the kids: They ask the four questions, they learn about their people’s history.

So we’ll warm Alex up with a wooden toy Passover set (which he’s kind of obsessed with). We’ve planned a couple of practice Seders, and we plan to shorten the real ceremony and to practice the questions with him.

With autism, it never seems to be the trouble you expect that floors you. But I’m confident that I will not be eating a cheeseburger on this year’s different night. I imagine Alex will, however, still find the presents to be the highlight.

The ASA has a good primer on involving children with autism in all kinds of religious events, including Passover, at http://www.autism-society.org/site/PageServer?pagename=life_fam_religion

Jill and I also have an older podcast about holiday experiences in general, at http://jillandjeff.podbean.com/2007/11/18/happy-holidays/