From Lounging to Laundromats: Re-entry is no day on the beach

Dan and I have been back from Kauai for two days and the karma gods have decided that we had too much fun and it's pay back time. So, instead of snorkeling or sipping Mai Tais we are figuring out the logistics of getting laundry done before our TWO MONTH OLD washing machine is repaired next week. It broke down on vacation load #2, the day after we got home.

It seems the folks at Home Depot don't really care that we can't wait five days to wash our sand-encrusted duds. Who knew?

On the plus side, doing laundry requires fewer brain cells than some of the other tasks on my to-do list. I seem to have left many of my brain cells on the shore line of the Na Pali coast. I can go to the laundromat and listen to my "Hawaii Five-O" Ipod playlist and try to go back to my "happy place."

Also on the plus side - the kids are well and we came home to a clean house, fresh linens and dinner already prepared. Thank you again, Cousin Paula - no price tag can be put on that!!!

Family burdens: In our own words

Thanks to the readers who commented on the financial and family burdens they face while raising their children with special needs. In your own words, here are some of the visible and invisible costs we bear along with the rewards of raising our children:
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"With our Aspie in particular, we never know which day the school will call to tell us he's just done something inappropriate or violent. We also have three days a week with therapists coming into the home. So my husband and I both have chosen to work part time, where, in a family of our size, we fall just inside the SSI radar with two diagnosed children. (If we only had one we wouldn't qualify.) This way, we have a chance of being much more available to deal with issues and time tables.

But because of our two we are also not 'soccer parents,' and won't be. We can't commit to giving our non-autistic son what many of his peers have--baseball, basketball, other team sports with practices and places to be and practices to meet. I think that's a cost that's hard to quantify."

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" As I was working this morning,I wondered if society as a whole understands the impact of autism on their financial burden (it was the economist in me this morning...ie. if 85% of our marriages end in divorces, then that means that a large amount of our families are on welfare and thus needing public assistance, WIC, etc...) So therefore, the pennies that society pays for services is really 'chump' change in compared to everything else. "

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" For us, having a young adult with a developmental disability means more: more laundry (he often wets the bed and is messy), more hot water (a hot bath is a favorite calming activity), more gas (a ride in the van is a favorite outing), and more child care for longer; barring a miracle, our son will never be able to be left without an adult caregiver. A huge extra expense too is dental care. Our son needs general anesthesia even to fill a cavity. Ugggh. Notice that I listed no special equipment or therapy in my list; just survival takes extra money."

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"Another expense for families is the severe lack of care options for our loved ones, especially after age 12. Many, many parents (usually the mom) want to work, are able to work, but cannot find reliable care.....at any cost.....for their child with a disability so they end up at home. I worked full time when our children were small and I have terrible memories of days gone bad when sitters would not show, etc. etc. In this area, care often runs 9 to 15 dollars an hour, again, when you can find it, so in many cases when the parent does find work, the net earnings are minuscule.

Or, worse for children, many special ed parents take jobs in schools such as staff assistant because the hours are the same [as student school hours]. These parents end up being truly burned out as work and home life start to look the same."

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Once again, my appreciation for these comments. They add a personal touch to the findings of a recent study, which I summarized in my post Financial Burdens of Raising Children with Disabilities: Policy Wonk Edition.

Cooties: How quickly we remember?

Can I Sit With You? - The Stormy Social Seas of the Schoolyard is an interesting if at times heart wrenching web site that solicits and prints stories written by "grown-ups" about being left out, bullied and otherwise marginalized in their childhood. Here is the mission of this site in the organizers' own words:

Mission Statement

Can I Sit With You?

Could more stress be crammed into fewer words? Though to some people this phrase means merely, “Yay, new friends,” to a lot of us it means instant school anxiety flashbacks. And possibly an intense need to crawl into a hole, or vomit.

Dealing with the other kids at school was complicated even if you didn’t have a label. For those of us who were socially awkward, culturally juxtaposed, same-sex attracted, gender-cocooned, income-challenged, “weird” sibling-saddled, differently abled, atypical looking, religiously isolated, on the autism spectrum, or who somehow just didn’t fit in, it could be brutal. Even though most of us eventually developed coping strategies, grew up, left school behind, and tried not to think about how much that time in our life sucked.

Until some of us starting having our own kids. And saw those kids start to flounder, saw them start fretting about how to fit in. Aiigh! What to do?

Well, we don’t know what most people would do, but we’ve decided to take action. We want to help our kids. We want to give them some ammunition, or at least some mental armor. We want to show them that almost everyone has been mystified or terrorized by the schoolyard social scene, though for different reasons and in different ways. We want them to see that their angst is both universal and timeless. We want them to know that other people totally understand.

________

The purpose of the Can Sit With You is two-fold: To provide a forum for folks to write about their school experiences as described above, and to raise funds for SEPTAR, the Special Education Parent Teacher Association for Redwood City. The site publishes and sells compilations of these stories, and when web site readers click on ads or buys recommended books, SEPTAR earns money.

A look around the SEPTAR site shows what amazing things a group of parents of kids in special ed can accomplish. It inspires/intimidates/brings out the green-eyed monster for those of us involved with local groups whose activities and accomplishments are more modest. I truly commend the parents in this group, and it is always good to see what other Special Ed PTAs out there are doing.

So, kudos to this Redwood City group,and maybe we can all click on an ad or two to support them. And if you would like to submit your own school story, check out the Can I Sit With You? submission guidelines.

Finally, I'm interested to know how the Can I Sit With You? stories resonate with you. Please share.

A letter to Classified Camas Public School Employees

Dear Camas Classified Public School Employees,

I have seen your signs all over town. I get a lump in my throat each time I see them. Yes, classified work has value. Yes, classified workers care about our kids. You are not paid what you are worth, and I don’t buy the district’s argument that your pay is less than Evergreen or Vancouver school district because Camas is smaller than these districts. I am in solidarity with you, except for the “yet”….and the “yet” is about those seniority rights….

You see, my nine-year old son with autism is what the district calls a High Needs student. The para-educators (we call them “paras”) who work with high needs children like him gain valuable on-the-job training from the teachers they are assigned to. I have seen a number of you with great skills and a knack for getting our children to learn. I have seen class rooms where the paras and the teacher get into a great groove together.

Yet, each spring there is this mystical “bidding” meeting to determine the next year assignments for classified employees. From what I understand, this process is based solely on seniority. At this meeting, para-professionals choose their assignments for the following year. The position they are now in may or may not still be open for next year when their turn comes.

So, let us say that “Miss Betty” works great with Teacher Smith in the high needs elementary school class room. Teacher Smith has provided her with specialized training regarding communication tools, positive behavior strategies, learning techniques and so on. The two of them mesh and make each other more effective at teaching children and managing the class room. This makes for a smooth running class room where students learn and parents are happy. What’s not to love??

Yet, under current rules, “Miss Betty” will not be able to work with Teacher Smith the next year if she is “out bid” by another para-professional with more years of seniority, even if that para has worked for ten years as a play ground monitor but has never stepped foot in a special education class room (let alone one for high needs children.)

And this benefits who? Union members, I just don’t understand. The district has recognized this problem and is proposing a change to this system, which I will present here in their own words:

The second proposed seniority modification relates to Class III High Needs Para-educators and Class III Professional-Technical positions. These positions are usually highly specialized or student specific. Many of the positions involve high needs students. As such, they require particular training and/or skills. The district is proposing that these positions be awarded initially by the interview/qualifications process. However, once a person is assigned one of these specialized positions, he or she would have seniority rights for a similar position in the future. For example, if a high-needs para position with more hours opened, and a current paraprofessional in a similar position was interested, the open job would be awarded based on seniority.

Yes, I am union sympathizer and no, I of course do not want a strike. But I am also a parent of a special needs child and do not want union rules to directly interfere with the quality of my child’s education – which I have seen happen.

I am also a woman who supports the professionalization of women employees– and let’s be honest; almost all of the special ed paras in Camas are women. I honestly can’t understand why some of you would oppose a modification that recognizes and respects your special education skills and expertise? Maybe your union fears that this would open the door to a further crumbling of seniority rules?

Good luck to all of you in your contract negotiations. You can never be paid what you are really worth, but please consider accepting the school district’s proposed seniority modification regarding high needs para-educators.

Signed,

A Special Ed Mom

End-of-school-year chaos: Whine train boarding now

A recent article, "End-of-year obligations drive parents batty" featured Liz Lange, maternity clothes designer, and how she and other working mothers struggle to balance year end festivities with her children with work commitments.

The article quoted Boston psychologist Catherine Steiner-Adair, who believes the situation has gotten worse over the years. She said, "It's this crazy culture we have now of anxious parenting. This nervous generation of parents is signing kids up for way too much stuff. And so we have too many rehearsals. Too many games, too many practices, too many cookies. Too much celebrating!"

It's nice to know that I am not the only frazzled one, but I still wager that moms of kids with special needs can match and raise one on moms of "regular o'le" kids. I am trying NOT to sound like a whine train, but we have IEP meetings to contend with, and concerns about our children's school placement next year (it's not as simple as "You will be in third grade with Mrs. Miller).

And the anxiety, yikes! So many of our kids internalize all the static around them - the excitement about the end of the year, the buzz surrounding field days, field trips and so on. Schedule changes, even for fun, can be hard on children, especially those on the autism spectrum. Our kids don't need to be over-scheduled to feel overwhelmed.

Sayer always gets amped up around mid-May, until school is over and he has started his summer routine. Last year, he compulsively repeated one phrase (I won't say what it is, I don't want to jinx us) so many times I got chest pains and had to retreat to a friend's house in Portland for the last few days of school. Knock wood, it hasn't been quite as bad this year but still no picnic. Add into the mix that I am now doing some consulting work and there you have it, a stress cocktail.

OK, so the whine train has come into the depot PLEASE reassure me that I am not alone! Send your comments and survival tips.

And to step briefly into the Gratitude Station, thanks to Mr "D" for guiding me through ordering and setting up my new computer system - I now have two screens and that REALLY makes blogging easier. Thanks also to dear "G" in LA for his assistance with software.

A Different Sandwich Generation: Caring for Children with Disabilities AND Aging Parents

The "sandwich generation" with a special needs twist. Are you a member of the club [if I was REALLY clever I'd have a picture of a club sandwich here]?

My friend "J" is has two teen/young adult children on the autism spectrum at home, along with her elderly mother who has dementia. "J" told me that she has run into women she knows from autism support groups at support groups for children of parents with Alzheimer's and dementia. Clearly, "J" is not alone. How she and others do it, I don't know. To try and find out, I searched on the internet for information on and tips for caring for special needs children while also caring for aging parents.

I found plenty of information about the impact of caring for both children and aging parents while working, including research by Portland State University researchers Margaret B. Neal and Leslie B. Hammer.

There are many articles and blog posts on finding care for aging parents, in general, such as A Place for Mom in Midlife's A Trip.

And there are a number of scary and depressing articles on the plight of aging parents of children with disabilities, who are worried about how their children will fare once they are gone.

AND some articles on the impact of multiple roles on the well-being of midlife women . Overall, it seems that the more roles a woman has, the greater her overall stress caused by such role strain. On the plus side, strong social support can mitigate some of that stress.

But information specifically on the stresses a being a"sandwich" parent who is caring for children with disabilities - I didn't find, well, anything. That isn't to say it isn't out there. Help, anyone?

I would like to hear from those of you who are experiencing this phenomenon. How does it impact you and your family? Have you found any resources to help? Have you discovered any "plusses" to this situation? I'd also appreciate any web links on information on this topic. Hopefully we can start a resource list on this blog, maybe called A Different Sandwich Generation?

"Born to Deal" or Bruce, you are still The Boss

Dear Bruce,

I would love to go see you at the Rose Garden tonight. I'm a big fan from New York, from Back in the Day. Warm nights hanging out by the Shore - you were talking about me, right?

But I'll be home tonight listening to my " Bruce Springsteen & The E Street Band Live in New York City" CD instead. Maybe I'll turn off the lights and wave my cell phone, just to be there in spirit. It isn't that I can't afford or procure a ticket, or because I can't find child care. For you, Bruce, I'd overcome those kind of obstacles.

But you see, Bruce, a few years ago I lost all my hearing in my left ear and now I have to be - ugh - practical and preserve the hearing in my right year. And I love you too much to kid myself that I could go to the concert and wear an ear plug - and keep it in. I don't have that much impulse control. One note of "10th Avenue Freeze Out" and out it would go.

Have a great show - you are still The Boss. I hope you and Patti enjoy Portland. Here's a little "parenting special needs kids" homage to your classic "Born to Run." Rock on.

Carol


"Born to Deal" (sung to the tune of Born to Run )


Every year we sweat it out on hard seats at our kid's IEP meetings
In the middle of the night we're obsessing what will happen later on
Will they have a place to work?
And what about housing?
Can we find that,too?
Baby, this disability thing rips your heart from your chest
It's exhausting, it's inspirational
If you want to know how it feels
But parents like us,
Baby, we were born to deal

Oh, oh oh, oh, oh, we gotta keep it real
'Cause parents like us
Baby, we were born to deal

Broken arm, autism style

When I wrote my last post on the travails of day light savings time I created a new “tag” or category for my posts – “things that just stink”. Little did I know that I would have my next post would fit into this category so perfectly.

Last Thursday, Sayer broke his arm. As breaks go it was the “good” kind – just above the wrist, no bones out of place and so on.  Through it all, Sayer has been quite the trooper. He cooperated when we took him to Kaiser; was able to follow directions and sit still. We were treated well throughout; thank you Cascade Park Minor Injury Clinic.

In the “Isn’t it ironic?" department, Sayer was invited to a pool party set for the next day. I told him he couldn’t swim because he couldn’t get his arm wet. He wasn’t thrilled but accepted it by saying “No swimming, eat cake instead.” So, he sat nicely and watched his friends swim, had cake, got his party bag and we left. Such a change from birthday parties of lore when he WASN’T injured but was too sensory overloaded to deal with the party routine.

At the party, the wonderful hosts of the birthday boy told Sayer that when he got his cast off he and their son would make a date to swim together at the same pool. Naturally, as soon as we got home Sayer was anxious to know what day he could swim again. Since I thought the doctor said he would be in a cast for six weeks, I counted six weeks on the calendar and gave him the number of days until he could swim.

Unfortunately, I later found out from Dan that the doctor said Sayer would be in a cast for six to eight weeks – I guess I blanked out after the words “six weeks.” So, now Sayer is counting down the "days until swimming" but that day may come and go and he may still be in a cast. Uh, oh, I forgot the autism counting rule – always add more hours, days, weeks as a cushion, since these kids can be pretty rigid. I’m guessing that if Sayer isn’t ready to swim on the day circled on our calendar we will be doing some serious compensation involving ice cream and OMSI.

So, yes, when a child with autism breaks his arm it pretty much just stinks but I can think of at least three positives:

1) Sayer is mastering left and right, i.e. “I broke my left arm”
2) Sayer has learned to count backwards, i.e. “39 more days and I go swimming.”
3) Sayer has learned that taking a shower with a produce bag rubber banded around your arm isn’t THAT bad.

Still looking for those daylight savings

Springing forward this week has been a spring towards exhaustion. Sayer has not adjusted to the new time and has been going to bed later than usual but, alas, getting up at the same early hour.

Sayer measures the passing of time by when the street lights around our house go on and off. This is one of his obsessions that we have been waiting over a year for him to get over. Sayer insists on not getting into his pajamas or having a shower until "it's all dark outside." Getting ready for bed once it got dark worked great in the winter, since he would be ready for bed at approximately the same time as he ran out of energy. By 7:30 or 8:00 Sayer would be tucked in and listening to a CD with the lights out.

But thanks to daylight "savings" time, this week Sayer won't settle down until it is dark. He is running closer and closer to empty and we are seeing some of those "behaviors" that have been hibernating this winter.

Curious to know more about the link between daylight savings time and kids with autism I did a google search and found a great post from a blog called Autism is a journey. The mom who writes this blog has a great list - The Top Ten Reasons Daylight Savings Time is a farse. I encourage you to check it out. And try and get enough rest!