Inspiration

Jana's post on inspiration gave me lots to think about today. (Thanks, Jana!) Coincidentally, it came on the same day that I have been reflecting on an aphorism I saw in a bathroom (inspiration comes in unlikely places...) that said "Follow the path of your destiny with purpose and an open heart." 

I've been so overwhelmed lately with the processes involved in caring for my girl (though not actually caring for her, or her). The whole applying for MediCal, IHSS, Regional Center, IEP etc. business just really gets me down. 

But reminding myself that this is my path, my destiny or my fate and to approach it all with purpose helps me to channel the fierceness I sometimes feel. I always know my purpose with her- to let her know she is loved and safe and beautiful. But is there a larger purpose? I guess the one I fall back on for inspiration is this (a good one for a staunch agnostic):

I expect to pass through this life but once.
If, therefore there can be any kindness I can show or any good thing I can do
for any fellow being let me do it now...
Let me not defer it, or neglect it,
For I shall not pass this way again.

Stephen Grellet (Etienne de Grellet du Mabillier)

And it reminds me of all the inspiring people who flagged the trail, then graded the track, laid the gravel and left room for us to pave the road. Thanks to all those families and parents who found a purpose in this fate and worked toward IDEA, ADA and the other small policies and works that make our lives better. 

Moving on with a renewed sense of purpose, and a more open heart, at least today.

Extended School Year

Lots of districts are cutting ESY this year. In response to this question:
"But what if a student has more time than that specified in their IEP?"
An administrator replied:
"Families will be called for an IEP meeting and the IEP will be revised. And if parents disagree, we'll see what happens then..."

What recourse do parents have? File a complaint? Go to hearing? Give in?

Who has the lawyer on retainer and who is busy raising a child with special needs?

It just is unfair bullying. In my personal opinion, that is nothing short of reprehensible.

In case you need to know, here is what the CA Ed Code actually says on ESY. (The section G1 on qualifying for Average Daily Attendance is important, we think.)

5 CCR 3043 - Extended School Year Services

3043. Extended School Year.
Extended school year services shall be provided for each individual with exceptional needs who has unique needs and requires special education and related services in excess of the regular academic year. Such individuals shall have handicaps which are likely to continue indefinitely or for a prolonged period, and interruption of the pupil's educational programming may cause regression, when coupled with limited recoupment capacity, rendering it impossible or unlikely that the pupil will attain the level of self-sufficiency and independence that would otherwise be expected in view of his or her handicapping condition. The lack of clear evidence of such factors may not be used to deny an individual an extended school year program if the individualized education program team determines the need for such a program and includes extended school year in the individualized education program pursuant to subsection(f).

(a) Extended year special education and related services shall be provided by a school district, special education local plan area, or county office offering programs during the regular academic year.

(b) Individuals with exceptional needs who may require an extended school year are those who:
(1) Are placed in special classes or centers; or
(2) Are individuals with exceptional needs whose individualized education programs specify an extended year program as determined by the individualized education program team.

(c) The term "extended year" as used in this section means the period of time between the close of one academic year and the beginning of the succeeding academic year. The term "academic year" as used in this section means that portion of the school year during which the regular day school is maintained, which period must include not less than the number of days required to entitle the district, special education services region, or county office to apportionments of state funds.

(d) An extended year program shall be provided for a minimum of 20 instructional days, including holidays. For reimbursement purposes:
(1) A maximum of 55 instructional days excluding holidays, shall be allowed for individuals in special classes or centers for the severely handicapped; and
(2) A maximum of 30 instructional days excluding holidays, shall be allowed for all other eligible pupils needing extended year.

(e) A local governing board may increase the number of instructional days during the extended year period, but shall not claim revenue for average daily attendance generated beyond the maximum instructional days allowed in subsection (d)(1) and (2).

(f) An extended year program, when needed, as determined by the individualized education program team, shall be included in the pupil's individualized education program.

(g) In order to qualify for average daily attendance revenue for extended year pupils, all of the following conditions must be met:
(1) Extended year special education shall be the same length of time as the school day for pupils of the same age level attending summer school in the district in which the extended year program is provided, but not less than the minimum school day for that age unless otherwise specified in the individualized education program to meet a pupil's unique needs.
(2) The special education and related services offered during the extended year period are comparable in standards, scope and quality to the special education program offered during the regular academic year.

(h) If during the regular academic year an individual's individualized education program specifies integration in the regular classroom, a public education agency is not required to meet that component of the individualized education program if no regular summer school programs are being offered by that agency.

(i) This section shall not apply to schools which are operating a continuous school program pursuant to Chapter 5 (commencing with Section 37600) of Part 22, Division 3, Title 2, of the Education Code.

[Authority cited: Section 56100(a) and (j), Education Code] [Reference: Sections 37600, 41976.5 and 56345, Education Code; and 34 CFR 300.346]

Holland?! As if it were a vacation...

Oftentimes when I meet people and we get around to The Subject--  you know, I have a special needs kid... blah blah blah-- people try to think of things to say that are supportive, helpful, even politically correct. And as we get to know each other some of them will begin to send me things, like the essay Welcome to Holland by Emily Perl Kingsley.

Now, I everyone is entitled to their opinion, and every family's experience of raising a child with special needs will be different, but I have to say, a friend and I spent a good evening just busting a gut laughing about how far off the mark this essay is from our own experience. Like, we've seen pictures of Holland, and it does not seem so bad! Why you cappin' on the Dutch? What did they do to you? If you haven't read it, Emily describes the experience of raising a special needs child as being like diverted from one vacation destination to another. 

Maybe in her world. In mine, raising a child with special needs is no vacation. I mean, I've been on vacation, and I don't remember doing the Hiemlich, timing seizures, running to the ED by ambulance after administering emergency doses of valium rectally, having to fight legal battles to just let my child join her friends at typical kid stuff. I mean, on vacation you do stuff like relax, enjoy watching your kids build sand castles at the beach. Right?

In my world, I feel a bit more like Sisyphus. We never left the airport. Just what do you do when vacation is cancelled and your whole family is stuck for a lifetime at JFK International? Well, sure, you make the best of it: buy books, go to the restaurant, play games, nap. Talk about what you'll do if you ever do get to go on vacation. You might even start negotiating-- so what would it take to actually get to do stuff that other people do? You might even take turns going on vacation, or begin to build a new vacation destination that could accommodate your family. Or you might just pack up and go home, realizing vacations are not for you. 

But most definitely raising a child with my kid's special needs is no vacation. Not even in Holland. 

We should all be careful to remember that disability is very individual. Some experience a disability that impacts them in ways that are complicated, challenging and unexpected but ultimately not devastating-- say a child with mild Down's that grows up to hold a job and have a circle of friends and vote. Others may have a different experience-- maybe the version of Down's Syndrome that comes with the cervical spine instability and life in a wheelchair with a ventilator and a feeding tube. These are not the same experience. 

For me watching my child die by the inch is more than a change of destination. I have a hard time hearing the PolyAnna's in the disability community use a voice that sounds as if they are speaking for me-- as if I like them should be so unaccountably well adjusted, happy and accepting of my child's disability. As if I should be grateful for the beautiful lessons I have learned, the incredible people I have met and (supposedly) never would have learned or met without her-- which I am. It's just that I know that no version of the Glad Game will change conditions on the ground. 

I am still daily wrecked by my child's experience. She's eight. I don't think I will ever get over that. She was robbed. She got a raw deal. No parent should ever have to be on the line with a 911 operator while their child is seizing for the 19th minute, waiting for the siren, and answering "is she breathing? is she blue around the lips?" over and over.  I would NEVER demand anyone else go through this, not another  child, not another parent. 

No, it is not Holland. And stop saying that about the Dutch. It just is not nice.