3.29.2008

Scenes From Leelo's Spring Break

Scenes From Leelo's Spring Break

My approach to mass solo child herding: Dude, just put them all in a cage with a trampoline at the bottom.

Iz Up, Moomin Down
(I tried to upload a video with Leelo jumping along with Moomin and Mali and Iz -- before he acted up on Mali and got booted -- but YouTube has been hating me for the past 24 hours.)

You can also send visiting children off to do "tricky pix" with your own spawn:

Four Arms

Seymour has been working insane hours at work, coming home after ten and sometimes closer to midnight most nights this week. I am not angry; I have been in production and understand that this is the way such things go. But I can punish him for somehow finding the time to swipe my camera when I wasn't looking:

So You Want to Steal My Camera?

Leelo and I have been celebrating his Spring Break by having some dates:

Leelo and His Mom at Bean Hollow

The purpose of these dates (a term coined by Jennyalice, who has had a two-week-long date session with her Jake as of today) is twofold:

1) Spend 1:1 time with Leelo, something our fractured schedule rarely permits, and get lots of snuggle and chat time with the sweet boy I love so much, going to aquariums and clambering over rocks at the shore without pesky sisters. I intentionally did not invite any friends to come with us.

2) Spend 1:1 time with Leelo because when he's at home, he wants me or a therapist guiding him through tasks (or he wants to swim). Otherwise, after five minutes of me not giving him my full attention, he will run into a corner and shit or pee in his pants (no faster way to get mommy's attention). He hasn't had this many accidents in months. After protracted down time at home, he gets so agitated that he starts beating the crap out of me, and giving his sisters the mad glittery eye that means I can't allow him within striking distance of them. FUN.

Yesterday I did have babysitting from 6 to 10 PM, but by the time the sitters arrived the stress of being with my son and not being able to make him happy was probably visible as currents arcing off my head. All I could do was stagger off to a restaurant and glaze out over a book. You know how wearing it is to watch a toddler? Imagine your toddler only getting more intense, less communicative, much stronger, sporadically violent, and becoming an escape artist. I am sorry for complaining so much but today was fifteen hours straight with no break.

In the midst of all of this I am supposed to be working on a real work project (due tomorrow) plus getting people to write stories for CISWY Seattle. If you know any Seattle-area writers who are mopey about the wait list for reading at the Salon of Shame, send them to us; we specifically scheduled our event so as not to conflict with SoS or tread on their toes in any way.

I feel doubly bad moaning because most of my local friends are also going through perpetual crises, the kind that would be heart-wrenching yet fascinating in a movie or novel, but which really suck on a recurring basis. Although it strikes me that our lives would make a great Reality TV Show: AUTISM FAMILIES: AREN'T YOU GLAD THIS ISN'T YOU?

If I was to stand at a wishing well*, I would wish for no more emotional or physical pain, no more smeared poop, and much more sleep and donated babysitting. And moments like Sage's and DivaLea's. For all of us.

---

*Yes, I watched Enchanted with Iz, and even spent the rest of the day singing like Giselle. Except I sang Poisoning Pigeons in the Park.

P.S. Oh rite, we had an Easter party on Sunday. It were too much fun.

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3.26.2008

Do You Want to Join Can I Sit With You? Live in Seattle?

Do You Want to Join Can I Sit With You? Live in Seattle?

You may recall that Can I Sit With You? is having another live performance, this time in Seattle, on Friday April 25.

But did you know that we are having a contest for one more author to read on stage with us? Check out the details, and feel free to pass them along. This is very very whirlwindy, but Jennyalice and I don't know how to do things any other way:

http://canisitwithyou.wordpress.com/2008/03/26/can-you-read-with-us-in-seattle/

Please feel free to forward this information as freely and quickly as you can.

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3.24.2008

Autism News from Other Sources

Autism News from Other Sources

The kids' spring breaks overlap today. Girls go back to school tomorrow, Leelo is out for the week. And when I say out, I mean he is neither going to school nor will he be hanging out with anyone but me, except for a couple of hours during a couple of late afternoons with Therapist R. It is quarter to three and he is already standing by the front door saying, "Hello, Daddy!" Too bad Daddy is going to be living in ProductionLand until some time in April and we won't be seeing much of him until then.

I think I might see if Mali can go to school full day this week so that Leelo and I can do some excursions together. Otherwise I drop both girls off at 8:30 but pick up Mali at 11:30 and then Iz at 3:00; not much wiggle room to for mountain hikes or tide pool runs in there. (Or working on the two projects I am seriously f***ing up right now either...).

Anyhow. I think you'll need to get information from other sources this week:
Newsweek chats about the vaccination damage ruling, diversity in autistic people, and various takes on vaccination (a subject that makes me grumpy, which is a post for another day).

Wired features Amanda Baggs and gives me hope that, since Leelo looks so much like her, eventually he will be able to communicate like her, too. (I really try to avoid talking in front of Leelo as though he's not present, but this article is a good reminder to be vigilant and inclusive.) My favorite part: when Amanda goes off on people assuming that her caretaker must have helped her put together her videos, when according to her the caretaker wouldn't have the least idea how to deal with that kind of technology.

ABC promotes the First Signs/Autism Speaks guidelines for detecting autism as early as possible, and emphasizes the importance of intensive behavioral intervention (ABA therapy).

Science Daily demonstrates how integrating a video monitoring systems into autism households, or at least during behavioral sessions, can be helpful for tracking and understanding behavioral triggers. We could probably use this in our house.

Medical News Today outlines a three-tiered approach to testing for genetic causes of autism. The paper's authors think that this approach could yield a 40% rate of genetic bases for individual autism cases, as opposed to the current 15% rate.

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3.22.2008

What I Do Not Heart: Spring Break

What I Do Not Heart: Spring Break

Actually, I don't mind it that much. The kids run amok and have fun (see below) but I get fuck-all done. Note to future self: do not plan to hit any professional or semi-professional deadlines during any foreseeable spring breaks.

Mali Unbound

3.19.2008

Alcholish

Alcholish

Apparently I am 97%ALCOHOLIC.

I must protest. True, I am not a cheap date, but my ability to hold my liquor stems more from weight gain and Anglo-Franco Canadian heritage than how I combat my temperamental incompatibility with full-time child rearing. Also, I suspect a well-read, culturally aware teetotaler could best my score.

From Godfather Michael, as those who know him might suspect.

3.16.2008

Leelo Lost His First Tooth!

Leelo Lost His First Tooth!

Leelo's First Lost Tooth

3.14.2008

Spontaneous Leelo

Spontaneous Leelo

I just watched in disbelief as Leo spontaneously chose and buckled himself into a driver-side passenger seat. It has been about a year, I think, since Leelo started being reliable enough to sit in a plain booster seat without jumping out and running around the van, and about six months since he demonstrated that he could buckle himself in -- but he has always insisted on sitting in a chair that he could buckle on his left-hand side. This morning he chose a seat on the other side, and generalized buckling the seatbelt on that other side. This may seem like an odd thing to be excited about, but for a kid like Leelo, this example of combined developmental/conceptual progress is remarkable. Smart boy.

Just how smart? Just how well is he doing? How proud are we? Check out Supervisor M's latest progress report. (FYI, I frequently post Leelo's reports and transcribed written notes in their proper time frame, weeks or months later. Not too helpful from a reader's perspective, but as this blog is still meant to be a Leelo record, it will hopefully be helpful to us, or future families like ours.)

Leelo is in such a good spot right now. His mood can still turn on a dime, but he seems to save the hitting/scratching for me and the pushing/hitting for his sisters (infrequently, and usually when they've gotten in his face). Overall, though, I hope Leelo is enjoying being with us right now as much as we're enjoying being with him.

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One More Worry As Leelo Gets Bigger

One More Worry As Leelo Gets Bigger

(found this in the draft post slag heap from July 2007)

So, you've got an autistic kid. You find yourself surviving not one, but several sieges: the shock of the diagnosis and its emotional aftermath, the difficulty of finding therapies that suit your child, the financial strain of implementing said therapies or the fight to get an agency to pay for them, the battles with school districts for the therapies and placements your child needs. But once you get all that relatively settled, you think you're golden, or at least adjusted, right?

Yeah, except puberty is looming. Let's just hope we can use sound advice to avoid real-life nightmare scenarios. I am grateful to Ann Bauer in particular for sharing her story.

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3.13.2008

Don't Listen to Me

Don't Listen to Me

Seymour told me that he thought my recent entry on Mali was weird. And he's right, I don't know what I was thinking. I guess I'm just weirded out by her not drawing at all and refusing to potty train with big screaming histrionics even though she wakes up dry every damn morning and holds her bladder all the way through breakfast, too.

However, this is a child who can mimic or groove on almost anything physical, instantly. Last week Seymour was showing Leelo the WordWorld website, and after a while Mali pushed him out of the way and started using the website herself, fluidly. Her preschool doesn't use computers and no one else in the house has ever shown her how to use a mouse. Last night she acted out the entire song "Tingolayo" (not the easiest motions, either: "my donkey drink, my donkey think...") in an inspired burst of improv, since no one in this house has ever shown her those movements, and at her school they only learn Ukrainian folk dances. Also she has incredible empathetic and social skills. And she is much more charming than everyone else in the house, except possibly her father. She is just not her sister.

Said sister is currently reading at a college level. She and I went to her parent/teacher conference yesterday and my, was was our girl pissed that her teacher wasn't giving her the highest possible grades. However her teacher told her that while she is easily passing everything and meeting the standards by sheer virtue of her impressive intelligence, she also refuses to put in effort beyond that which is absolutely necessary, and so she hasn't earned outstanding grades. This is totally true; Iz is a bare-minimum girl when faced with that which is less-than-irresistably engaging. And since I am a crammer/last minute deadline lover/procrastinator and refuse to revise or put real effort into anything, I'm not really sure how to teach her the value of effort, preparation, and thoroughness.

Favorite Iz line-of-thought: a few days ago she was reading The Big Book of WWII, pausing every few minutes to pepper me with questions: Why isn't WWI as famous as WWII? When did it actually become WWII? Why didn't the U.S. join the fray before we were attacked at Pearl Harbor? We were obviously ready! Why did the Germans use motorcycles and sidecars in their Blitzkreig attacks? Etc. etc. etc. I thought she'd give up, but after a couple of days I told her to call her Uncle Chet. Her first question to him: "Why did the Ramones name a song after a German military maneuver?"

Also, she discovered some boxes from toys that came from "Santa" up in our closet last week. She confronted Seymour, and he said, "What do you want me to say?" She said, "How about saying that you're a liar, and that you've been lying to me for years?" Busted!

Leelo is about to lose his first tooth. It comes all the way down in front like a drawbridge. He refuses to touch it himself or let anyone else touch it, unless we are "flossing" his teeth -- then we can give it a good yank. I do hope he doesn't swallow it when it finally comes out. The new teeth are coming in shark style, behind the old ones.

He has had two poop accidents in the last three days, after weeks and weeks with no accidents at all. Both happened when we had kids over and I was the only adult present, which is happening a lot right now as Leelo has several afternoons per week off due to Therapist L's leaving, and his gradually transitioning to longer days. Iz is off most afternoons, too, due to parent/teacher conferences. Chaos makes for loose bowels, I guess.

Also interesting: my son has taken to stripping off all his clothes and hauling ass down the ravine behind our house the moment my back is turned. GAAAAAAH!

So, hey, it's time for another video! The first person to correctly identify the book Iz is holding* will win my original concert book from Prince's Lovesexy Tour.



*She recently chewed out a friend who referred to Polly and the Pirates as a comic book. "It's a graphic novel," growled my daughter.

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Bay Area Summer Resources for Special Needs Families

Here are the notes from last night's Special Ed PTA presentation on Summer Camps for Challenging and/or Special Needs Children. We were all pleasantly blown away by the number of incredible summer resources and options available to our children.

PARCA
http://www.parca.org/

They have family meetings.

They try to have as many fun activities as possible.

The age that seems to be neglected is the pre-teen through early adult age range, so this is what they provide. She has activities at Mercy High school and Stanford, etc.

They are having a social (not a dance), because the word "dance" puts too much pressure on people. It is a chance to hang out with friends; a lot of times these kids will be shuffled around in county placements, etc., so they don't necessarily have a lot of other opportunities to see their friends from previous classrooms.

Parca has a respite program for kids age 6 to 17, in Burlingame.
Details at http://www.parca.org/raji.html

They have a summer camp with inclusive child care, you can pick by the week. They are in session while school is on vacation. However they don't provide transportation. The camp is called REACH and is located at Crestmoor Elementary in San Bruno.
Details at http://www.parca.org/REACH.html

Parca sprang from families rebelling against the days when families with childrens with disabilities were told not to bond with them. Their children have thrived due to parents advocating for better health and education services.

The nurse who started Parca is still in Palo Alto. She really forged the path for the families who have benefited, come after her. She enabled parents to be together and share stories, because no one else can understand what you're going through when you have a child with a disability. Some of the serious stuff makes you want to cry, but these parents were able to handle it because they had each other.

The speaker's personal perspectives on raising a special needs child (her child is now an adult):

She is a general ed science teacher and special ed mom; she advocates being hands on as much as possible with your children because that way you can see if you're overdoing or not.

She believes we need to teach our children to advocate for themselves. We need to teach our special needs children mantras: e.g., We never swim alone, cook alone, bathe alone, go outside alone, open the door alone.

Kid cel phones (four #'s only) are wonderful for keeping in touch with our kids, even when they become adults.

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Lighthouse Project (Campbell/Los Gatos)
http://www.thelighthouseproject.com/

The camp is located at Los Gatos Creek Park on the border of Campbell and Los Gatos.

The Lighthouse Project is a year-round Pediatric OT (Occupational Therapy) Clinic for children with high-functioning autism, ADHD, NVLD, Aspergers, Social dysfunction, Social pragmatics, Sensory integration issues, etc..

They work with children from age 3 to 16 (including all high school). They see children at the clinic 1x week/hour.

This summer they have 12 camps, geared towards specific issues, mostly social issues. Specific themes include frustration tolerance, anger management, self-control, self-confidence, making friends, surviving middle school, etc. There is also an organization camp for the older kids, teaching tools for learning how to self-organize.
Details at http://www.thelighthouseproject.com/camps/camps.html

There is a parent intake evaluation, with the director, before campers can attend.

Day camps are from 9 AM to 3 PM, from the end of June to mid-August.

For 3 - 6 year olds, they have speech therapy mini-camps in mornings, and OT camps in the afternoon.

Transportation is not provided.

Costs are $140/individual and $110/group.

The camp has wonderful facilities, including a gym and a classroom setting with a rock wall, swings, jungle gym, etc.

They are not vendorized through the Regional Centers, but they do work with some of the local San Jose school districts (e.g., Alum Rock).

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Redwood City Parks & Recreation
http://www.redwoodcity.org/parks/

**You do not need to be a resident of Redwood City to participate in RWC Parks & Rec, and there is no non-resident fee.**

When the RWC Parks & Rec guide arrives, Page 74 is the accessible recreation activity page that everyone turns to. However they have worked really hard, applied for grant with state of CA to launch and inclusion program, which has become an inclusion philosophy.

They want people to be able to join any program they want to, any program they see in the guide. The whole guide is for everyone, with any type of disability.

What if my child has severe autism?
• They have to be with their age peers. They cannot be with younger children.
• They have to be able to thrive in the program.
• But if these two factors are not an issue, they will be matched up with a volunteer mentor/buddy.

They are also looking for volunteers. The program will only succeed if they have volunteers. They provide official community service hours.

They also provide the opportunity to meet with the class's teacher beforehand, which is not normally an opportunity offered by park & rec departments.

They also provide inclusion application forms. They need at least two weeks to find a good volunteer. The form is available online, click on the Inclusion Program form on the Accessible Recreation Page:
http://www.redwoodcity.org/parks/arap/index.html

Accessible Recreation program is more of a social club. It is for ages 13 and up. Weekend trips, socials, dances, etc.

If you have a child 13 and under and are looking for more specialized programming, she recommends looking at the San Carlos Special Needs program. Unfortunately, the San Carlos programs don't group participants by age; they have all ages together.

If a sibling is the participant's mentor/buddy, they get to go to the camp for free, but they try to avoid this if she can, if they have other volunteers available.

She prefers for parents to be really open and honest about their children's needs, because they're not going to turn anyone away if they can help it. However they have to protect their other campers and so cannot have a child who is a safety or violence risk.

Families can provide their own aides/buddies, if they'd like.

Volunteers are never left alone with the participants. A staff member is always present.

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BOK Ranch
http://www.bokranch.org

BOK Ranch's main office is in RWC, but the program is operated out of the Horse Park in Woodside off of Sand Hill Road. The program is 24 years old.

Prices are the same for everyone:
Intake is $30.
Riding lessons are $50, usually in seven-week sessions. There are four riders per class.

It is a therapeutic riding program (recreation), not a hippotherapy (clinical therapy) program (which is ~$130 for thirty minutes).

Hippotherapy goals are therapeutic, but
Therapeutic riding goals are equestrian -- learning how to ride a horse.

Sohis is not the same as NCEFT, which is hippotherapy (clinical), aka physical OT or Speech Therapy on horseback. NCEFT starts at 18 months. People/kids who get discharged from NCEFT are frequently referred to BOK. BOK is recreational.

She said that we would be surprised how many kids' behavioral issues disappear once they get on a horse. Although sometimes the intake can take a while.

They are starting to expand into a lot of different programs.

They used to have 23 riders/week, now they have 100/week.

They have three levels of riding classes: Maximum Support, Minimum Support, and Transitional.

Riders can start at age four and go through adulthood. Oldest current rider is 72.

There is a weight limitation of 180 lbs which is being stretched for the Veterans' program.

Riders have to be able to sit independently on a horse. They do not hold people on the horse (Test for candidates: can they sit on a bar stool with a helmet on their head?)

Volunteers: they use 80 a week. Volunteers are always a need. They need volunteers to make a long-term commitment, so this is not a good placement for someone who only needs to fulfill 20 hours of community service.

Enrollment is based on an initial intake process. Intake packets are not available on the website because they prefer to screen people on the phone first. Mostly it is a lot of release forms, plus a form that needs to be signed by your child's doctor (but does not require a separate doctor visit). Once the packet is submitted, then they do an intake evaluation.

People with severe spinal cord injuries are not recommended.

New programs include:

Vaulting (gymnastics on horseback)
• The kids have to be able to follow directions with less than a 3 second delay
• Have to be able to dismount independently

Carriage Driving Lessons
• For people who can's sit astride a horse, they can learn to drive
• Wheelchair accessible carriage

Disabled Iraqi Veterans and Their Families (Horses for Heroes)
• A Trail Club/recreational club to incorporate families (first in the country)
• Team sports (a lot of the vets are very competitive, as they were disabled in top physical form)
• The Adaptive Polo Team has western saddles, BIG mallets, practices adjacent to the Stanford Polo Team

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Camp Opehay (Formerly Camp New Hope)
http://www.campnewhope.net/

This is a camp for children with pediatric bipolar or mood disorders (children who have other conditions in addition to the BP or mood diagnosis are welcome)

Camp Opehay, in conjunction with Stanford Pediatric Bipolar program
Three-day camp for kids with BP, the only one in the US, it's for kids age 9 - 17

Kids need to be "euthymic" at time of application. This means they cannot be depressed, manic, or mixed.

Two doctors on staff the entire time
Kids get all their meds on time, every day.

100% volunteer-run! They needs more volunteers.

At Camp Arroyo in Livermoore, cabins, swimming pool, rock climbing,

Try not to have it be too "therapeutic," more relaxing and fun.

There is one therapeutic component, but it's more educational.

Question: What about a non-medicated oppositional-defiant child? Answer; Bring 'em on!

The camp exists, is parent-founded, to give kids an opportunity to just be kids.

August 9 through August 11. About 56 kids is the limit. Get applications in ASAP!

Are hoping to make it a week-long camp in 2009, so are doing more fundraising and recruiting more volunteers.


Another resource is the Stanford Pediatric Bipolar Clinic
http://pediatricbipolar.stanford.edu/

For parents with BP who are worried about their kids. They cover bipolar, mood, anxiety disorder, etc.

Free evaluations, clinical and genetic studies, kids sometimes even get paid for participating.

Also good for kids in foster scenarios, group homes.

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Camping Unlimited/Camp Krem
http://www.campingunlimited.com/

Started in 1957

Not volunteer-driven, staff is paid

Vendorized through East Bay Regional Center, also there are some "Camperships" that are available.

In Boulder Creek in the Santa Cruz Mountains

From June 8 through August 9th.

Provide recreational services for people with developmental disabilities form age 5 through adulthood.

They mix everyone together, kids are not separated out by disability. However they are separated by age. Staff ratio is 1:2 but they do have limited 1:1 spots available.

Summer camps are five sessions, with three 12-day sessions, one 10-day session, one seven-day session.

They do pickup in Vallejo and Emeryville.

There is an open House Saturday May 10th.

Sign ups start Nov. 1st.

There are three different camping programs:

Main Camp
  • Traditional camp, cabins, eat in mess hall, arts & crafts, swimming pool, hiking, etc.
  • 60 campers at a time
Outdoor Camp (age 14 and up)
  • Campers are a little more independent, sleep in tents, cook own meals and clean up, a little more independent programming, 2 - 3 day hike, 12 mile hike from Big Basin to the beach.
  • Take compasses, go out into the woods, stargaze through telescopes, come up to the main camp to swim and join in some of the programs.
  • 15 campers at a time
Travel Camp (age 14 and up)
  • Arrive first day , next day go someplace else in CA. e.g., Big Sur - Monterey - Carmel
  • 15 campers at a time
Also year-round Day program (some sleepover weekends), goes from Sept - April, also excursions (e.g., Exploratorium, bowling, etc.)

How do they deal with bolters? Maybe they'll be a 1:1 camper. But the camp is not enclosed or fenced. They have never lost a camper yet.

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Social Strides
New clinic in Redwood City
http://www.socialstrides.com/

The director does social skills, parent testimony is that it is fun, but rigorous, the therapist understands behavior.

She will be offering summer social groups.

3.10.2008

Leelo and His Sisters

Leelo and His Sisters

Cooperative Video Watching

Leelo is starting to appreciate the company of his sisters. He wrestles with them, allows Mali to pour water over his head in the bath without decking her most of the time, and they like some of the same videos. Leelo has been spending a lot of time watching the intro to The Magic School Bus (probably because that bus looks like his) and his sisters even dance with him to that catchy tune (although they tire of it after the tenth or so time). In the photo, they are watching my favorite candidate for the "Why, Why, WHY?" YouTube video awards.

Nice to see this kind of mellow togetherness happening in our household, even in snatches.

Yup, this one has a video, too:


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3.08.2008

Mali Is Special

Mali Is Special

Painterly

If she was Iz, at this age (3 yrs, 3 mos) we would be having intense conversations about eating like carnivores vs. vegetarians, and she would have been writing her name and drawing proportionate people with eyeballs and pupils and fingers, for months. Mali drew a happy face about a year ago and since then has only scribbled. She talks non-stop, but is only now starting to process and think about the world around her. Then again, if she was Leelo, at just over three she would mentally be on the moon, except when with therapists. I know we're lucky.

And I don't know why I'm conditioned to be disappointed about Mali being just a normal kid. She is delightful and I should be happy. Everyone has told me that she is fine: I have several extensive evaluations by national experts in the field of child development, documenting her on-track growth in all areas, as well as her brightness.

Maybe it's that we've had a kid who wandered off the typical developmental path, and because of that I won't stop worrying about Mali's development until she reaches adulthood.

Oh hai, here's the video version:



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3.07.2008

Inclusion and Creating an Inclusive Playgroup

Wednesday's Special Education PTA meeting featured Trudy Marsh Holmes of Parents Helping Parents (PHP), speaking about how to create an inclusive playgroup for your child. Though her audience was exclusively parents of special needs children, her tips and ideas would work for any parent who wants to create a playgroup in which their child can learn better social skills and make friends, and who wants to have a home in which other families feel comfortable and want to visit.

(Trudy gave me permission to post my notes from her talk. Any omissions/contradictions are therefore my fault. Trudy was inspiring; warm, frank, and energetic. I highly recommend seeing her speak in person.)

Why Have Inclusive Playgroups?

Trudy remarked that we have the ability to create wonderful lives for our children. And it is important that if we do something wonderful for our children, we need to leave a trail so that others can learn from us.

If your child is ousted from a community, you are ousted from that community. Exclusion feels horrible.

Trudy's child is now twenty-three. There was no inclusion available when her child went to elementary school. The school said that her child could come play with the typical students during recess if Trudy would come supervise her child personally, then her child would have to go back to the Special Day Class.

So, Trudy decided to have a playgroup on her own since the school and neighborhood were not supportive.

Her child was six, but all the six-year-olds were in school, plus her child was more developmentally similar to three and four-year-olds, so she started a weekly morning playgroup at her house. (She used her respite hours to have a respite worker be with her child while she ran the playgroup.)

Trudy made sure the playgroups were wonderful, fun, and rewarding -- so much so that eventually the playgroup kids would come over spontaneously. (And she accepts that they didn't always want to play with her child; sometimes they wanted to see mom, or do the activities.) But they felt comfortable coming over to her child's house.

Her playgroup lasted for four years. It started out with two other kids, eventually there were twelve kids in the group.

Why did she do it? Why should we? We want exposure to kids who are developing typically so that our kids can learn from them. THIS IS WHAT INCLUSION IS ALL ABOUT.

When given the opportunity, most people are likely to embrace a situation that will benefit their children. And inclusion is both beneficial and enriching, for both typical and special needs children. This is true, we know this from studies. Inclusion is enriching because it improves children's capacity for understanding differences

We all have different dreams and visions for our children. We might choose to do inclusion because we want our children to go to college and fit in, or be social creatures in a social world, or create friendships with their disabled peers by observing how they are formed.

However, if they are always with peers with the same disabilities, it is not always possible to learn these social skills.

Why do we do inclusion through play?
• Repetition of experiences is a way of gaining mastery over them.
• Play is how kids organize and integrate life experiences.
• Developing creativity and increasing the child's repertoire of experiences
• Play is something often overlooked in educational planning for children in special ed
• Inclusion in a child's front yard, neighborhood and community, their natural environment, offers the best "Social Security"
• It builds friends (and advocates) into our children's lives besides their parents. People will look out for your child.
• It allows integration into your entire community as well as the special ed community


Your Child's Integrated Playgroup

Gives you the rare opportunity to do all the planning around your child's needs. You have an otherwise rare opportunity to:
• Facilitate
• Make unilateral decisions
• and customize based on your child's skills/needs/strengths (can choose areas in which your child excels OR needs help)
• If there is a child in the neighborhood who you don't think would fit in to the play group, don't invite them. (SR: However you could suggest to the parent that they set up their own playgroup to help develop that child's social skills)

Start slow so that you don't burn out, so that you can really observe your child's reactions and needs.

The Plan (you have to have one) "If you fail to plan you plan to fail" Plan for success!
• Logistics: How, where, when?
• A schedule is important
• How long? How often?
• You need other children, of course, to be models for your child.
• Use materials your child knows and loves.
• Be creative. This playgroup can be anything you want it to be. You might have to spend a few bucks. Good activity ideas, with backups.
• WIth the tools, you can do it, but confidence is the greatest tool you have.
• Talk to the other parents about your plans first.

Perceptions
• "Able-bodied" children's perception of disability is formed early in a child's development.
• So, with young kids, you probably don't need to be as worried about the kids as you do their parents.
• Kids don't usually notice disabilities unless they are really obvious.

Getting Started
• Write an invitation to other parents based on the kind of activities you would like to have.
• If there's nothing in it for the other parents/kids, they're not likely to come. NO WHINING ABOUT HELPING YOUR SPECIAL NEEDS KID.
• Be confident. Be positive.
• Examples: Video Game Night! Baking Party for St. Patrick's Day! etc.
• Mention your child's special need or not, your choice.
• What's in it for the kids/families? They are not going to necessarily come out of the goodness of their hearts. Tell the parents, "I am going to host this, you can have an hour to yourself, or stay and meet other parents in the neighborhood."

Make sure your invitation includes:
• Who are you?
• Why have you chosen to do this?
• What's in it for them?
• What is your expected outcome?

Here is an invitation example:
Hi, my name is Sharon Rosenberg and my son Joseph is seven. We just moved here in June 2007 and would like to meet more people and kids in the neighborhood. We have a trampoline and a pool, so if you think your child would have fun swimming and trampolining with us for an hour, please drop your child by on Wednesday afternoon at 3:00. Joseph looks forward to making new friends, and so do I.

Now You Have Kids Coming, What Do You Do?
• Create a plan
• Prepare schedules
• Write, post, & follow schedule so that the schedule is the baddie, not you.
• Incentive programs
• What makes them come back? Make it fun!!!!! Be silly, stupid, goofy, FUN FUN FUN!
• Give 'em two straws (no one ever lets a kid have more than one straw)
• Believe that this program will benefit all involved, not just your child
• Assign seats to prevent conflict

Focus on your child's strengths and "splinter skills." Give your child an opportunity to shine, if possible.

Legal Mumbo Jumbo
• You have to have Insurance
• Employment: DO NOT TAKE MONEY FROM OTHER PARENTS or legally you are their employee.
• Drop in or drop off?
• First aid, exclusions, allergies: ask! If someone is sick, do not let them stay!
• Fire & earthquake drills, injury prevention
• Hand washing!

Real Life
• Make schedules your focal point.
• Goals/activities will change with time.
• Challenges: Ability gaps, behavior, energy, don't let them immobilize you, even though they can be devastating.
• When you notice the spark of influence, it makes it all worthwhile!

Social Skills
• Keep the group small
• Provide appropriate materials to the skill/interaction desired
• Have enough materials for all (so that no one fights over the blue crayon -- have five blue crayons if you have five kids, five scissors, etc.)
• Plan activities that require cooperation
• Quickly reinforce specific desired behavior (in specific terms, not general ones: "I like how you colored with your blue crayon" as opposed to "That is great work!") KIDS LOVE PRAISE
• Praise is a great reinforcer/incentive; be on the lookout for other reinforcers

Other resources:
PBS Parents: Inclusive Communities: http://www.pbs.org/parents/inclusivecommunities/friendships.html

3.05.2008

Excitement by Elliott Bay

Excitement by Elliott Bay

Is this page jumping up and down?

I ask because Can I Sit With You? is having another live reading, this time in Seattle, on Friday, April 25th, at 8 PM!



Although we are not saying so on the CISWY site, here in my own microsphere I can write with glee that the event was kick-started when an N P R reporter contacted us and asked about our project in general and Seattle-area CISWY readings specifically. (!) We then asked J. K. and SJ, two of the CISWY Seattle authors, about possible locations, they started rallying for us, and J. K. ended up securing us a donated performance space at Annex Theatre.

The suggested ticket price will be $12, because it will be another SEPTAR fundraiser, but ideally people can pay whatever they think is fair. If our ideals are not compatible with online ticketing technology, then you can pay either $5 or $12. (We're not trying to be greedy, but we also want to donate a portion of the proceeds back to Annex.) Be warned that the theater only seats 99 people, so get your tickets as soon as they go on sale (/Pollyanna).

The event will be about an hour long. Afterwards there will be books for sale and authors signing them and Annex Theatre has a bar in the lounge but you can still bring your kids if they stay out of the bar. And everyone gets a free sticker!

Confirmed readers as of today:

Michael Procopio
SJ Alexander
Liz Henry
Amanda Jones
Sarah Glover
Cindy Emch

(Plus rumor has it that Jason Kovacs and Jen Myers might be persuaded to make appearances.)

We will also be having a contest for one author to both read at the event and have their story published in the next CISWY anthology. This is another situation in which details are forthcoming, but if you are interested, please submit your story A.S.A.P. Note that while we are able to provide a live opportunity for the world -- perhaps even N P R -- to witness your genius, we cannot provide transportation or lodgings.

(Oh, and we are migrating to Wordpress. Let us know what you think of the new, still in flux, design).

The Last Supper, BSG Stylee

The Last Supper, BSG Stylee

Via Seymour.

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3.04.2008

For the Sake of Argument

For the Sake of Argument

Yesterday
Me: "...I'm just sad because I really wish you hadn't argued with every last thing that I said."
Iz: "I didn't argue with everything!"

Today, things have changed!
Me: "I can't help teasing you any more than you can help debating with everyone."
Iz: "I don't always debate!"

Overbooked

Overbooked

I might have written down this school year's schedule elsewhere, but so what. If you're wondering why I get fuck-all done, corresponded, or followed-through, perhaps it is due to the schedule below. You'll notice that, after nine years of parenting, I have managed to earn just over 90 minutes per day of free time in which to do all the laundry, bills, correspondence, various other projects, and house-tending. If anything is accomplished during any other time, it is because I am neglecting at least one child. (Or conscripting them!)

Being the one who -- as Jennyalice puts it -- has a minivan permanently attached to my ass is not something that would normally get to me. I've worked with a schedule like, but not as intense as, this for years. But for the past five or six months, Leelo and Mali have been refusing to sleep at night, usually until 10 PM (even with all the sleepy-time routines and no daytime naps) and then Leelo wakes up at 6:30 AM. Seymour and I get none of that happy kids-in-bed, let's-parallel-websurf togetherness that is supposed to make the parenting bearable. It makes me grumpy. And hate everything and everybody.

Monday
8:15 Drive Iz to school
8:30 Drive Mali to school
9:00 Get back home for Leelo's school bus
9:30 school bus actually arrives
11:15 Leave to pick up Mali
2:50 Pick up Iz, drive her to Aikido
3:20 Aikido starts
4:30 Aikido ends
6:00 Leelo's home session with Therapist R ends

Tuesday
8:15 Drive Iz to school
8:30 Drive Mali to school
9:00 Get back home for Leelo's school bus
9:30 school bus actually arrives
11:15 Leave to pick up Mali
12:30 Pick up Leelo from his school 20 miles away
1:30 Leelo's home session with Therapist L starts
2:50 Pick up Iz
3:30 Iz's home Spanish tutoring starts
3:30 Leelo's home session ends
4:30 Iz's tutoring ends
5:00 Iz sees counselor twenty minute drive away
6:00 Iz's session ends

Wednesday
8:15 Drive Iz to school
8:30 Drive Mali to school
9:00 Get back home for Leelo's school bus
9:30 School bus actually arrives
11:15 Leave to pick up Mali
12:30 Pick up Leelo from his school 20 miles away
1:30 Leelo's home session with Therapist L starts
2:50 Pick up Iz
3:30 Leelo's home session ends
4:00 Leelo's home session with Therapist R starts
5:30 Leelo's home session with Therapits R ends

Thursday
8:15 Drive Iz to school
8:30 Drive Mali to school
9:00 Get back home for Leelo's school bus
9:30 school bus actually arrives
10:00 Bad Moms Coffee!
11:15 Leave to pick up Mali
12:30 Pick up Leelo from his school 20 miles away
1:30 Leelo's home session with Therapist L starts
1:45 Pick up Iz, drive to piano lesson (at Mali's school across town)
2:45 Iz's piano lesson
3:15 Piano ends
3:30 Leelo's home session ends

Friday
8:15 Drive Iz to school
8:30 Drive Mali to school
9:00 Get back home for Leelo's school bus
9:30 school bus actually arrives
11:15 Leave to pick up Mali
2:50 Pick up Iz
4:10 Leelo arrives home

As of today, the schedule is going to change. Therapist L has left us for greener pastures. She had been sucking up a bridge commute to work with Leelo for almost five years, so I can't blame her. Also, now that our boy spends so much time in school, the number of hours available to her weren't really worth the effort. We are sad sad sad but very much understand.

Because now Leelo can go to school full time! He had been leaving school early three days per week to have home sessions with Therapist L. Now he will get to stay until 3:00 (and arrive home on the bus at ~4:00) four days per week, and go see Sage for speech therapy again on Wednesday, his early release day. Since the SLP working with him at school does not grok autism, this is a really good thing.

I will write more soon about how much I love Leelo's school (SLP notwithstanding). And how much he loves it there, and is really learning there, and how much even Supervisor M, with her high standards, likes his school. He might not be sleeping, but during the day Leelo is a happy happy boy. And that is a remarkable thing for a kid who has spent the past four Februaries deep in a nasty behavioral bender. We are grateful. And relieved.

----

Forgot to mention that we were recently visited by a friend from Ghana. Mali and I took him all over town. Charles had never encountered Pollo en Mole before, and was smitten. Never before had Seymour or I seen a used dinner plate so clean.

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3.03.2008

WANT

WANT

Quilt? Map? Yes! Both! Want!

Discovered while chaperoning Iz's mostly unappreciative enrichment (i.e., elective) class on a field trip to a local textile museum four days ago.

Daybook

Daybook

One of these days I'll write about what is actually happening in our lives. At the moment said lives are too full for doing much besides living them. But check out this day in the life of our youngest child (from Oct 2007, may have posted the link before but so what):

Third Child Gone Wild

I especially like the shot of Leelo being greeted when he arrives home. He could be the short bus poster child, don't you think?

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