“Do you have anyone to talk to?”

As a parent of a special-needs kid, I hear this question a lot. Are my well-meaning friends talking about a shrink? I know this sounds old-school, but I feel like wifey is my shrink, and I’m hers, and it goes really well. Sometimes, the question gets re-phrased to the idea of a community of other parents who also have kids facing similar challenges. This always gets back to email groups. I’m on some.

The emails pile up. I adjust the settings to “daily digest.” Not sure if this makes it better or worse. I skim some, skip others. Some are about swimming classes, others about disability nights offered by movie theaters. Obviously, some of them are so specific to certain locations and certain aspects of autism that I filter them out without worrying. Many more are borderline. Some apply to me. So I read them. And I think, ugh.

Is this what my well-meaning friends meant when they asked the question?

Too often, I’m like, can’t deal with this. Even though it’s helpful. Very rarely, I’ll comment on a thread. This can lead to one really empathetic person sending me private emails to offer all sorts of help. I guess I’m not good at responding to this kind of thing. Or we have as much help as we can handle right now. Not really sure.

For anyone who’s ever asked me “Do you have anyone to talk to?,” or thought to do so, today I’m giving you a taste of where that question leads, a little window into what these email threads are like.  Now, these groups are invite-only, so you may consider yourself lucky to peek behind the blue-sticker curtain…

M writes: special education is a service, not a placement
Z writes: M, what does that mean?

M replies:

Being in special education doesn’t mean your child must be in a special education classroom. My son has been in all regular education classrooms since he was in kindergarten and has received a full range of services: aide, OT, ST, ABA, etc.

So that’s what I mean by special ed being a service. Special ed is the
help the student needs to access the curriculum and be given a basic floor
of opportunity to learn. So it can be anything and cannot be limited to a
certain location.

Districts constantly mislead parents to believe that if they opt out of a
SDC that they have to give up related services. Nothing is further from
the truth.

Districts are always trying to give the parent the impression that an IEP
meeting is like going down the cafeteria line – you just get to pick from
what is currently being offered. More more no less.

But that’s not federal/state law – which entitles you to cooking from
scratch. We must understand the individual child’s educational needs.

With that said, getting from-scratch cooking is typically only possible
when you both have an independent professional and a special ed attorney
involved. So that’s why you’ll see me and others on the list endlessly
recommending getting an independent evaluation. You need to get
recommendations from someone who has no vested interest in your child’s
program and who you can get an honest answer to the question, “What would
you do if this were your child?”

Your eyes haven’t glazed over yet? Awesome! Personally, I like that this person is taking time to help a stranger – very thoughtful. If I had never read anything like this, I’d be like “omigod, oasis in the desert!” Of course, I have read things like this…but not exactly like this. Or have I?

D chimes in:

Hi

To add to M’s excellent and detailed response:
-The SD does not have the money to fund what is truly appropriate for
every child. Thus, they tend to start with the cheapest option and see if
the parent will accept.
-There is an inherent conflict of interest when the funding source is also
the provider (think of the HMO insurance model). Thus, the burden is upon
the parent to determine and fight for what their child needs. An
independent assessment completed by a qualified professional is most
likely the best way to both determine and legally justify what your child
needs. (eg, Carol Slotnik, Dr Lori Bond).
-See the publication “Special Ed Rights and Responsibilities” from
Disability Rights CA for a really good overview of the law. (free on line
at their website).
-At this point, I would also highly recommend that you consult with a Spec
Ed attorney. Most will offer a free initial 30 minute consult and a
sliding fee scale based on income. We use Susan Foley 650-345-2300.
However, there are a number of good local attorneys. Find one who is
familiar with your district. Hiring an attorney was one of the best
decision I have made on this journey (we are 9 years past diagnosis).
-The SD is required to consider a continuum of placements with the default
placement an inclusive classroom with modifications (eg, an aide). I have
never experienced this with my SD. Even though my son was been in a
private GE schools for the past 8 years, when we met in June for an IEP,
they only offered a SDC.
-IMO.. Not all 3 year olds belong in a classroom full-time (ie, group
environment). You only have so many waking hours in which to apply
interventions (with naps, eating, etc). Consequently, you must determine
what is an optimal use of your child’s valuable time. Research has
concluded that “early and intensive intervention” is necessary for “best
outcomes”. Dr. Lovaas would define this as 30-40 hours of 1:1 ABA for at
least 2 years. The US govt report “Educating Children with Autism”
(available free online) would define this as a MINIMUM of 25 hours weekly
of intensive intervention. My son, for example, received 25 hours of ABA
from age 2-4 (plus OT, speech, and other therapies). At age 3.5, we added
2.5 hours x 2 AMs per week in a GE private parent participation preschool
(where I acted as his aide). The second year of ABA was funded by the SD
via a private NPA ABA agency. We declined their offer of SDC classroom. We
also accepted OT 2x per week, 1:1, 45 minutes from the SD (declined a
speech offer of 30min 2x because I deemed the SLP’s offered to be
unqualified–traded this for additional ABA hours). At age 5, we increased
preschool to 3 AM’s and dropped ABA to 15-20 hours weekly. In addition, we
supplemented each year with therapies and activities such as private
speech, OT, social skills groups, My Gym class, facilitated play dates
(with both NT and ASD peers) run by either out ABA agency or myself. My
son did not start Kinder until age 6. This allowed us an extra year of
more intensive interventions prior to his spending 5 days per week at
school.

D

 

All good points. Do you ever wonder if some of the people on these lists have a baseline Word doc that they’re working from, and they cut and paste depending on the topic? I hope so, for their sake. I mean, this is a lot to come up with from scratch every time!

It’s not appropriate to ask if some people have too much time on their hands, because these ain’t Martha Stewart-like drape decisions; this is life and death about our children. Plus that begs the question: do I have too much time on my hands? (Well, I’ve been teaching at least four college classes per semester for a while now, plus writing a book for Palgrave and another for Bloomsbury, so let me tell you the answer feels like NO.) The issue is that however much time they have, I have limited time and patience.

You see, I hate to skip any of these monologues and dialogues. It helps us decide about Dar’s services; it helps us deal with the district, as in “Well, I heard about a mom whose kid…” But…I also get information overload. (By the way, for the record, I recognize the irony of kvetching about information overload by…providing information.) Bottom line: how do I know when to read, and when to stop reading? Do I need to come up with search terms?

M comes back:

I’m definitely on the same page as D.

However, IMO, the lack of funds is not always the core problem at
districts. It’s inflexibility. Districts create programs for the composite
kid with autism – they put a lot into it and it’s extremely difficult on
their egos when parents refuse them. It also takes more effort when a kid
has a truly individualized program – and I don’t mean effort that
necessarily costs money. It’s just easier for everyone involved to just go
on autopilot and put kids on the autism assembly belt.

Furthermore, special ed kids just aren’t a priority. So districts
inappropriately blame special ed for encroaching on the general education
budget. For example, every time the JV lacrosse team goes to a tournament
and the district has to pay a substitute teacher to cover the coach(es)
classes – that’s considered to be the general fund (even though only a
small number of kids even at a big high school can participate on the
team). But if you spend the same amount of money on an aide as you do for
substitute teachers for just ONE JV team, it’s considered encroachment. So
every single cost for special ed kids is considered to be *taking away*
from general ed students regardless of the extra-curricular costs for
sports and other activities. Not to mention that many high schools spend
more per student on sports than they do on academics.

Also consider that special ed classrooms are very expensive. Every now and
then someone will post a report from a educational consultancy agency
which makes recommendations on how a district can cut costs. They almost
always recommend that the district nearly zero out special ed classes and
get kids back into regular education classes as much as possible.

There are districts that have ZERO special ed classes – they only use an
inclusive model. Now of course, inclusion isn’t necessarily appropriate
for all kids. So those districts are able to do all inclusion because only
the most severely affected kids are placed either in county office of
education or non-public school placements. But it definitely changes the
dynamic when IEP teams are starting out as Congress mandated with the
regular ed as the default placement.

I also agree that being in a classroom setting might not be appropriate
for a 3 year old. Many kids need intensive interventions from the
beginning to get them caught up on skill sets, modify behaviors, etc. I
also cannot emphasize the importance of getting your child with other
typical kids in informal settings at every opportunity. But again, that
can be tough if the child isn’t getting any intensive supports.

My son also started kindergarten at 6 years old and it was the best
decision for him.

I’m sorry to say that I think that many, many SDCs are just free
babysitting with any type of learning brought down to the lowest common
denominator. SDCs should only be for kids who have specific challenges
that cannot be accommodated in a regular education classroom. And even for
those kids, they should have goals focused on their overcoming those
challenges. Instead, most IEP teams spend their time whining about how
more goals would be too much for the child.

What they really mean: the goals would be too much for them. That they
shouldn’t have to modify their behaviors. That they are too rigid to
create truly individualized education plans. Keeping data for progress
reports is too cumbersome. Too often an IEP is a group of adults sit
around a table basically blaming students for their own inabilities and
deficits.

And that is why parents like Christine recommend that you consult with a
special ed attorney who has to constantly remind and prod the district to
comply with state and federal laws.

M

K chimes in:

Just want to add to all those wonderful sharing: full-inclusion is what
they deserve, but can hardly be implemented right:-). My son is now in
middle school, with only RSP and some cut-down speech hours. When he was
diagnosed, he has 10 out 12 on DSM-IV. He has language, most echolalia. He
was never in SDC. We did not do as much as D has done, but we did
manage to get school funded ABA etc. before kinder. Then after three
different small christian schools (small size, but no service) before moved
back to public schools, he now learns to manage a little better. In my
opinion, full-inclusion is great, but need to be done right with lots of
effort from everyone…

So, to sum up, the act of reading snippets like these is one of the results of the question “Do you have anyone to talk to?” It’s mostly listening, but that’s important too. And you know, it’s fine. It’s just a lot. And it never ends. And it never ends. And it never ends. And it never ends.

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