Showing posts with label family. Show all posts
Showing posts with label family. Show all posts

Sunday, April 15, 2018

Adventures in Special Needs travel: Hawaii

The family went to Hawaii. Two special needs adults, one neurotypical daughter and two parents. There was a lot of planning work and a lot of on-the-fly adjustment. We chose Honolulu/Waikiki because our Explorers are more comfortable with concrete than with nature. The trip was a success, in part because, by sheer luck, the atypical rainfall spared both golf outings with #1. 

Luck aside — some things that worked well:

  1. Direct flight. A five hour mechanical delay (Delta) was stressful though.
  2. Single residence located in Waikiki with kitchen and good parking. We ate most meals there. Nearby groceries. Many things we could walk to.
  3. Fairy detailed advanced schedule that we then swapped around based on weather.
  4. Copious research.
  5. Explorers now independent enough they could stay in hotel room or go off on their own in many settings.
  6. Private tour (“Oahu Private Tours" <jason@oahuprivatetours.com>). We got lucky with our guide too; #1 is on his best behavior with young women.
  7. We rented a van (very expensive in Hawaii by the way).
  8. Good attractions for our Explorers: Zoo, Aquarium, Waikiki beach, Paradise Cove snorkeling (quiet, no Hanauma stress), Foster Botanical Gardens (tranquility), Diamondhead hike, “Edge” restaurant hotel table that was near beach so we could mix food and sand…
  9. English language generally worked, McDonalds and Subway ubiquitous.

It was a very big expense of course few families could afford it. We did it this one time because we could manage cost and the children are leaving school settings, entering work, moving out soon, etc.

It’s perhaps useful to know this can be done — and the general approach might work for others. It’s a long way from our 2010 family trip to a nordic ski resort and 2008 road vacations but I don’t think we’re quite ready for, say, a week in Korea.

Tuesday, July 14, 2015

On being a special needs parent...

You are walking in a quiet wood. It is morning with a mild breeze. You dip your cup into the stream ...

An arrow sinks deep into the earth by your left foot. You leap forward, in mid-air notch an arrow and let fly on landing where you know your assailant will be. There are 3 of them, rested and deadly. The battle is joined.

The quiet returns. You dip your cup into the stream. You are always ready...

E prefers to think of this as akido, always equipoised to redirect the attack. I like ninja myself, cause I’m a guy.

It’s like that. You never know when a crisis will strike. When an innocent question will suddenly become a 30 minute negotiation. It’s like parenting a difficult 14yo, but it’s more and it lasts for decades.

No wonder studies show accelerated aging in special needs parents (though some of that may be financial distress related to cost of parenting special needs kids and adults).

On the up side, one never lacks a cause.

Saturday, February 28, 2015

Curbi - iOS controls for special needs teens and adults

curbi gives parents, guardians and other caregivers the monitoring technology Apple built for corporate customers. It’s $7/month “Per household”.

You can’t use it with school iPads because they already have similar “management profile” technology installed. It should work with home devices.

It’s something I’m considering.

Sunday, September 11, 2011

No credit

#2, Aspergers, wails and berates me for half the ride. Kind people glare at me. I am the worst father.

Then he climbs the big hill. He finishes it all. He is proud, happy. He will always remember this. He will remember how he showed his doubting father. It will empower him.

I will be forgiven.

No credit though.

Only satisfaction.

Saturday, April 16, 2011

Transition Tool Kit from Autism speaks

Autism Speaks [1] has put together a Transition Tool Kit targeting families with special needs children ages 14-22. The goal is to support transition into the community when school services end.

The kit is downloadable, but as best I can tell the kit is the same set of PDFs that are found on the above page. An "online appendix" is a curated set of links to additional information.

The kit is pretty generic, because state rules vary [2]. Autism speaks has state resource guides (ex: MN) with sections on adult transition. Minnesota's data is a well done list, and it includes a state specific transition guide.

I'm including all of MN specific information in my MSP special needs custom search engine.

[1] In the past they've been associated with the immunization obsessed, but I wonder if they're trying to get clear of that crowd.
[2] At some point, do we relocate to a state with better services? What happens when millions of retired adults begin driving their mobile homes around the nation, desperately seeking dwindling services for their adult children? Just wondering.

Adapting to fewer resources for special needs children and adults

The future is looking kind of gloomy for most Americans ...

Care of special needs adults in post-employment America

... the Great Recession grinds on. The percent of employed adult Americans (employment-population ratio) is now back to where it was in 1976, when most women weren't in the workforce. The annual incomes of the bottom 90% of US families has been flat since 1973...

Some Americans are astoundingly wealthy, but most of us are not. The direct and indirect costs of care of a disabled child, or adult, means special needs families were stressed even when American social supports were relatively robust. Now things are getting harder ...

... Many young adults with autism have transitioned into large residential systems, whether group homes or institutions, offering round-the-clock services. But waiting lists can be long. And increasingly, in an effort to stem costs, states are moving away from the group home model into family-based care, a trend that started about 10 years ago.

... Nationwide, 59 percent of people who receive autism services are living with their families, according to Mr. Lakin...

... Don Meyer, the founder and director of the Sibling Support Project and the creator of Sibshops, a network of programs for young siblings of children with special needs, said: “Parents need to share their plans for their special-needs child with their typically developing kids. After Mom and Dad are no longer there, it is likely it will be the brothers and sisters who will ensure their sibling leads a dignified life, living and working in the community.”...

We are now seeing long group waiting lists in Minnesota, yet we aren't yet seeing the direct cash transfers to families that are reported in Connecticut, Arizona, Vermont and New Hamphsire. In place of group homes we now have "housing access services" -- suited for persons who can live independently.

We're going to have to figure out how to adapt to this. I have ideas, but I need more people ...

Thursday, February 18, 2010

Adventures in special needs – A Nordic ski resort

At one point in my life if I felt I needed a challenge I’d ride my bike a few thousand miles, or explore a foreign land.

Now I can dwarf those experiences with a simple four day outing to a Nordic ski resort.

I’m still recovering from this challenge. It was successful, but it did push the envelope.
We started a few months ago with one neurotypical child and two on the “autism spectrum” (a somewhat meaningless concept, but we don’t yet have a better classification). One child had done some snowboarding with limited success and had refused any skiing of any sort. Another had done some downhill skiing and decided, after a single face plant, that downhill skiing was insane. A third had very nervously descended a bunny hill.

We ended with all three navigating intermediate cross country ski trails in the wilderness (really) of northern Wisconsin.

The unique challenges here included:
  • Three children, two parents. This stuff isn’t easy even for neurotypical children and it was very rare to have all three in a reasonably good mood at the same time.
  • Weather. These children are used to winter, but an autistic meltdown can take a long time to resolve. Sitting around at 10F for an hour can be a problem, and they don’t necessarily respond to cold in a rational way.
  • Clothing. See weather. Spectrum kids and adults can be resistant to logical dressing.
  • Gear. Actually, this was easy. Cross country skiing fear is much more comfortable than downhill or even snowboarding gear.
  • Unfamiliar environment, atypical stimuli: Northern scrub forest, harsh winds, knowledge that there really are wolves and cougars in the woods (even if they usually stay out of sight) – all troublesome. One child has a very strong need to always know exactly where he is in relation to the home base and to all family members – the first time on a trail was extremely scary. (The second time was easy however – his location memory is exceptional).
  • Different schedules: One child takes hours to come online and peaks in the afternoon. Another rockets at dawn and is done by noon.
The full story of how we made the transition for all three over about two months would take a book to tell. It required genuinely Machiavellian manipulation of sibling relationships and a wide variety of motivators.

There are some quick lessons, however, that one might apply to a variety of similar special needs adventures.
  1. Food: As a result of the climate, exertion, and anxiety the children needed to eat five times a day. If they were short on food they all melted down. We needed to keep them fueled with solid, high fat, high protein meals.
  2. Everyone melted down sometime, including the neurotypical child. Interestingly they rarely melted down all at once, perhaps because there was a strong sense of group solidarity. Each child felt their parents had gone insane and they needed to look out for one another.
  3. Choose a friendly resort in decline with a very good pool. The downsides of the resort people having limited knowledge of what worked and what didn’t was outweighed by the warm water swimming pool. The need to serve to the smoking, drinking, and spending snowmobiling market meant our kids oddities went unnoticed.
  4. Our mobile phones were useless, but we had modern digital “walkie-talkies”. These things are cheap and absolutely amazing. REI has very good ones.
  5. It would have been better to have had a third person along, but it was doable.
  6. You need to be fully on your game. Get lots of sleep. Plan carefully and be ready to abandon every plan. Have contingencies for your contingency plans, and be ready to abandon those. Know when to retreat and when to advance.
  7. Find a local expert and review all the trails in depth. In our case one parent woke early to scout out trails in advance and plan routes – that worked well. Get the best possible maps. Have a compass.
  8. Carry a big pack to hold clothes, jackets, reserve materials, etc.
  9. Be ready to stop a passer by and send them for help. We never had to do this, but you have to be psychologically ready to bail.
  10. Establish a routine very early. Our was: TV and breakfast while Dad scouted routes. Swim. Eat again. Skiing. Eat again. Game room/rest/computer use. Eat. Ski/Other. Eat. Swim. Video.
  11. Bring chocolate on the trail.
  12. Lower the room temperature before dressing. Open a window and discretely turn off the heat. This is a big help.
  13. Overdress. They need to be warm at the start. Clothes can be removed and placed in the backpack.
  14. The kids snow pants were too heavy. We’d have done better with lighter wind pants over the nylon loose stretchy pants our boys favor. Invest in clothing.
There’s much more, but those are the ones I can remember. The most disabled child who we thought least likely to succeed turned out to be a wizard – he skied circles around us wearing only a long sleeve shirt when the wind chill was probably 10F. Everyone succeeded, all our goals were met, and the parents will eventually recover.

Update 2/1/2012: Years later we've done this several times. The biggest issue lately was with our neurotypical daughter, who gets anxious about downhills and loathes falling behind her brothers. Which is to say, we were totally victorious. Until I reread this by accident, I'd forgotten how hard it was to get this initial success.

Sunday, December 13, 2009

Wealth and med choice: the antipsychotics

Interesting results, annoyingly inflammatory interpretation ...
Children on Medicaid Found More Likely to Get Antipsychotics - NYTimes.com

New federally financed drug research reveals a stark disparity: children covered by Medicaid are given powerful antipsychotic medicines at a rate four times higher than children whose parents have private insurance. And the Medicaid children are more likely to receive the drugs for less severe conditions than their middle-class counterparts, the data shows.

Those findings, by a team from Rutgers and Columbia, are almost certain to add fuel to a long-running debate. Do too many children from poor families receive powerful psychiatric drugs not because they actually need them — but because it is deemed the most efficient and cost-effective way to control problems that may be handled much differently for middle-class children?...
These sorts of studies irritate me. Not because they're unimportant, but because they are relatively easy to do, they are prone to error in interpreting diagnostic data, the level of discussion is usually weak, and there's rarely any follow-up. To be meaningful we'd have to fund far more difficult and expensive ethnographic studies (aka "qualitative research"). We rarely do that.

I have two early thoughts about this particular study. The relatively trivial one concerns the "conditions" clause. This usually refers to ICD-9 coded diagnoses (sometimes DSM coded, which is a hacked offshoot of ICD-9). Since these diagnoses are crafted to meet insurance reimbursement rules they are strongly influenced by payment source. So they are not a reliable data source for this kind of study.

The more interesting discussion point concerns what is meant by "actually need them" and "cost-effective". We have personal experience, as we have one child whose consulting pediatric psychiatrist long offered the use of anti-psychotic meds. We were able to avoid their use, but only because we have relatively large resources in many dimensions. Managing some autism-spectrum/"explosive child" disorders without, or even with, the most powerful available medications is extraordinarily challenging.

Our choice to forego their use was not based on a great dislike of these medications. If we had failed we would have used them. We might need them in the future. It is rather that we had relatively great, but not inexhaustible, private resources. The differentiator was not what our insurance could pay, but rather what we by virtue of training, education, income and temperament were able to do.

No society, not even Sweden or Norway, would be able to provide similar resources to every needful child. We should expect antipsychotic medications to be used more often among those with fewer private resources.

Four times more often? That does need to be investigated -- but remember that the billing diagnostic data is suspect, and that many of these conditions have a hereditary compoment. They may impact the parents, and impacted parents will be far more common in the medicaid population (because, of course, their income will be very low).

Now that I've said all of the above, I'll switch to the other side of the debate. There are almost no medicaid psychiatrists, and even fewer medicaid pediatric psychiatrists. Heck, there are almost no psychiatrists anywhere. There is a smoldering crisis in the expert psychiatric care of poor children. I would be very interested in a study comparing the use of antipsychotic medications in medicaid American children vs. a comparable Canadian group. Even with all of the objections I've raised, I can believe this is a major contributor to the findings. We need either to pay medicaid psychiatrists far more money, or we need to find an alternative way to deliver psychiatric-type services to this population.

Tuesday, October 06, 2009

Managing net access

Computer misuse isn't a uniquely special needs problem, but problems with abstract concepts of trust and responsibility can make things harder.

After discovering the limits of our supervisory capabilities we're augmenting them per this post ...
Gordon's Tech: Web filters - return to OpenDNS

... I figured we could restrict access to watched machines. Yeah, if we weren't so distracted that might work. The logs, though, tell me that ain't doin' it.

Multiple computers with multiple accounts on each computer doesn't help. Neither does running OS X, there's not much of a market for OS X access management (see: Children Online: Web Filters); they are sold but I can't find any reviews from anyone I trust [1]. There might be a market except Apple bundled Parental Control into the OS.

Oh, wait, why not use Apple's Parental Control features? Because they're $#!$#!$ broken and they've been $&*^%^% broken for years...

Sunday, June 14, 2009

Early intensive intervention in autism - what's the evidence?

In the past six months I've been repeatedly reading about the immense value of intensive early intervention in the outcome of children with cognitive disorders and autism.

This surprised me. I follow the literature from a distance, and I don't remember a landmark study that defined the clinically significant (rather than statistically significant) benefits of intense early intervention. I especially don't remember a study describing the kind of early intervention.

I figured I'd missed something, so I did a quick review and found these studies ...
Turns out I missed .... nothing.

There's no significant new evidence, and damned little quality evidence of any kind to guide recommendations for early intervention of any kind by any party. The "conventional wisdom" about "intensive early intervention" appears to be more wishful thinking than evidence based.

This is damned frustrating. Intensive interventions strain financial and personal resources for society and families. In the absence of evidence we don't know how best to spend that money, time and energy -- on speech therapy, cognitive exercises, early education programs, adaptive sports, parental training, respite care, behavior modification programs, alternative communication strategies, cosmic ray therapy (ok, I made that one up) ...

Sigh.

Ok, now back to our regular programming.

Sunday, November 23, 2008

Why I will be flexible even if I am old

We all become less flexible as we age.

I will be more flexible than most.

How can I boast that?

It is a small benefit of parenting some very inflexible children. In middle-age my wife and I have been given a graduate level extended boot camp style program in enhanced flexibility.

Our natural bounds have been shattered.

Assuming a normal decay curve from our artificially elevated heights, we may expect a twenty year flexibility bonus.

It's good to have something to offset the accelerated aging associated with parenting special needs children.