I’m proud of my piece at GeekMom today: An interview with my friend Holly Miller, who battled her school district for three years to get necessary Braille instruction for her son, Hank. Hank, like my own Wonderboy, has oculocutaneous albinism—in Hank’s case, the effects on his vision are severe. He is legally blind. But the school district considers him a sighted reader and opposed teaching him Braille. Holly and her husband Jeff took the case to court—and won. I hope you’ll click through and read the article!
Archive for the ‘Special Education’ Category
A blog friend was curious to know why we decided to get Wonderboy’s speech therapy and audiology services from the public school district instead of through a private (i.e. medical) source. It was a tough decision, and I still have moments where I second-guess it. Navigating the system, dealing with an IEP—not to mention the IEP team—hasn’t always been easy. But most of the time I think it was the best choice, bearing in mind that no alternative is perfect.
The advantages, for us, of accessing these services are:
• close to home
• free (including ear molds and hearing aid batteries)
• no waiting time before a scheduled session
• our ST and audi are easy to reach via email or phone, are excellent at keeping lines of communication open with us, and are eager to work with us on a friendly, personal level.
These are very important factors, all of them. For therapy situations in a medical environment, such as the local children’s hospital where Wonderboy currently receives physical therapy—his PT needs are medical and involve consultation with orthopedics doctors—we must accept long travel times, difficulty finding parking, parking fees, insurance co-payments, a bit of time in the waiting room even before a scheduled session, and a more detached relationship with the therapist. Our current PT at Children’s is certainly warm and friendly and has an excellent rapport with my son, but she works in a Big Hospital System with all sorts of bureaucratic red tape crisscrossing between us. I can’t call her directly on the phone; we certainly aren’t going to be emailing back and forth. It’s a different kind of relationship.
The speech therapist (our “new” speech therapist—not really new anymore, as Wonderboy has been seeing her for over a year now—this is not the therapist who sandbagged me in the “not always easy” post I linked above) and audiologist we work with in the school district are wonderful: excellent at their jobs, very respectful of our choices as parents, and eager communicators. We are in regular contact via phone and email, not to mention our weekly sessions. Wonderboy adores them both and looks forward to ” ’peech days.”
The down side, of course, is having to deal with the whole maddening IEP process and School District Policy. I have to be constantly on guard against encroachments upon our rights—not by the individual therapists, but by the school district. The district representatives are completely frank and somewhat apologetic about their need to “cover themselves” from any possible legal action disgruntled parents might take against them. This particular district has been burned before, it seems, by parents who filed lawsuits because they felt, after the fact, that the district had not “done enough” for their children.
District reps have told me quite frankly that they “just don’t know what to do with a parent like” me, i.e. a parent who believes meeting my son’s needs is my responsibility and not the public school district’s.
One tangle we ran into this summer was over the matter of evaluations for PT and OT. Wonderboy has muscle tone issues and motor delay, all part of his neurological, shall we say, unusualness. 😉 Because he has congenitally short, tight muscles, we have had to do a daily stretching regimen with him since he was four months old. About once a year, we check in with PT to make sure we are still doing everything correctly, and to see whether there are any new areas we ought to concentrate on. Every time he has a growth spurt, his muscles get even tighter (because bone grows faster than muscle), and when that happens, sometimes we’ll do a kind of booster session with a professional PT for a few months. That’s what we’re doing right now: three months of every-other-week PT at the children’s hospital to work on some specific issues.
I scheduled an OT evaluation at Children’s as well. (Which is a whole other story in itself, one I’ll have to save for another post.) His fine motor skills seem to be developing very nicely, but his doctors thought an eval would be a good idea to look at some global sensory issues and stuff (to be technical about it).
The school district had a very, very, very hard time accepting my assertion that we would be declining their offer of OT and APE (adaptive physical education, the closest they can come to PT) evals this fall. Since I already had PT and OT evals scheduled at Children’s, and since we intended to get PT and, if necessary, OT at the hospital rather than through the school district, I saw no reason to squeeze yet more appointments into our already busier-than-ideal schedule. I declined the district’s eval offer and gave them the dates of our scheduled evals at Children’s just so they’d no we were on top of this.
As I understood the regulations, the district is obligated to offer the evaluations and I as parent have the right to decline them.
The district begged to differ. That applies, they said, to the first time evaluations are offered. But once a child is in their system, once a need has been documented, they must (so they told me) provide these evaluations.
This conversation went back and forth between us all summer—amiably, mind you. I (amiably) dug in my heels, because I guard our family’s time very carefully. Every new appointment is a drain on our time. These medical and therapy-related appointments add up. They could easily dominate our schedule if I let them. There was no reason for us to make two extra trips to the school to duplicate evaluations he has already had, especially since I had no intention of receiving those services through the school district.
Oh, this was hard for the district to accept. Finally, in one rather surprising phone call, an extremely friendly and earnest district rep told me—with immense apology in her tone—that “we were at the point where the district would normally be forced to seek mediation.” Hello! This despite my having provided the district with documentation of the PT and OT evals scheduled at Children’s. But the district really, really didn’t want things to get ugly (i.e. go the mediation and arbitration route). They decided to “compromise” (I put it in quotes because I still believe they are talking about district policy, not state law) by accepting a written statement from me in which I acknowledged that they offered the evals, we declined them, and we are aware we can ask for them at any time.
I was happy to provide such a statement and put the matter to rest. I know that many parents in other school districts are in the position of having to fight to get their children necessary services, and I’m not inclined to get too cranky about having a district all too eager to provide services to my child. But I do think it is vitally important for me, as for all parents, to stay alert and informed about what the law says and what our rights are, and to make sure not to passively cede any of those rights.
I meant to blog about this last week but need more time to do some research. I haven’t lived in New York for six years and am not totally up to date on the education regulations there any more. But this recent development shocked me and it most definitely needs to be talked about.
So I was glad to see that my college classmate Andrea has posted a letter to Governor Spitzer addressing her concerns about the NY Board of Regents and Department of Education’s reinterpretation of the federal IDEA law. Their recent ruling, if you haven’t heard, will deny free, public-school-provided special services like speech therapy and OT to homeschooled children in New York State. These services will continue to be available to children enrolled in public and private schools.
These special services are paid for by the taxpayers. In other states, the public schools are required to provide the same special services to homeschooled and private-schooled children as they do to public-school students. Federal law mandates this. It is under this law, the Individuals with Disabilities Education Act, that Wonderboy is able to receive necessary speech therapy and audiology services through our local school district, even though we are officially registered as a private school under California education regulation.
I am not a zealot. I am a concerned parent who, at great personal and
financial sacrifice, is trying to provide her two, exceptional children
with the tools needed to become life-long learners and independent,
creative problem-solvers capable of living their lives to the fullest
their capabilities allow…This
act by the NYS Ed. Dept. (revoking services to home schooled IEP kids)
feels like a slap in the face for families whose financial and emotional resources are already spread thin to breaking.
Andrea suspects that the policy change has more to do with funding problems than anything else. No matter what the cause, it is hard to believe that the state would choose to interpret the federal law in a manner that excludes homeschoolers but includes privately schooled children. This is stunningly inconsistent.
Wonderboy ran up to me and said, "Mommy, I need kiss you!"
Smooch. Now that’s what I call speech therapy.
"Need kiss" is more like "nee kih" but he is starting to use ending consonants on words like up, cup, and big.
"I need to kiss you" has to be one of the sweetest sentences a mother can hear.
In the meeting last week there was a really funny (and for me, triumphant) moment when he said something to the audiologist. Earlier in the meeting, his speech therapist and I had been talking about how much she "gets out of him" during a session. His tendency is to watch her, either solemnly or with a big grin (if you know him in person you know what I mean about the grin—I was telling this story to a friend and she said, "Yup, that’s Wonderboy all right"), but not repeat back the words the therapist is trying to get him to say. Then, after an activity is finished, he’ll say the sound or word clear as a bell. He just—like most kids his age—doesn’t like to be put on the spot.
So in the meeting, I was describing this as a typical behavior for his age and developmental stage. (Developmentally, he is more like a young three than a going-on-four three.) The speech therapist was looking at it from a different angle: she was seeing his silence as an inability to perform on cue rather than a choice not to perform. Well, this is one of those things that a mother just knows. When you spend all day with a child, you get a pretty good sense of when he can’t do something and when he won’t.
About twenty minutes after this conversation, the audiologist burst out laughing. She explained that she had been trying to get Wonderboy to talk to her. She was sitting next to me, and he often wandered over from the toy area to stand at my elbow and give me a kiss on the arm. (He is so sweet with his kisses!) The audi had been holding out a plastic ice cream cone and telling him, "Say ice cream. Say ice cream." And he had just grinned at her.
So what made her burst out laughing was that several minutes after she stopped playing with him and set the toy cone down on the table, he ran up and grabbed the cone and said to her, with the most impish glint in his eye, "I got my ice cream cone."
"It’s exactly like you said!" the audiologist crowed.
This reminds me so much of when Jane was two years old, in the hospital for chemotherapy. One day she pitched a big huge fit right in the middle of the hall on the cancer ward. This was unusual behavior for her, and medical personnel came running from all directions.
"Is she seizing?" called a nurse, racing to my side. A doctor elbowed me out of the way, dropping to his knees beside my shrieking, writhing child.
"No, it’s not a seizure," I said. "It’s a tantrum. I wouldn’t let her run in the hall."
She had a central line in her chest, which was connected by tubing to an i/v pole from which hung a bag of medicine so toxic I was under orders to wear protective gloves when changing her diaper. So, no, I wouldn’t let her run away from me down the hall, pulling the i/v behind her. And she was two years old, and this made her mad.
You wouldn’t believe what a hard time I had convincing the assembled docs and nurses that this wasn’t a medical emergency.
Sometimes special needs kids are just kids.
So much I want to respond to in your comments! Good thing there’s a weekend coming up…
One important point I didn’t get to yesterday is this piece of information regarding homeschooling with an IEP in California: as soon as the child reaches legal kindergarten age, more options open up. Wonderboy will be four in December. Part of the system’s inflexibility has to do with his age. He falls in a murky space between the Early Intervention cut-off age of three years, and legal kindergarten age. No, murky is the wrong word: the law is very clear. It’s a rigid space; that’s a better way to describe it.
As soon as Wonderboy reaches legal kindergarten age, I have the option of ditching his IEP. That’s because I am homeschooling under California’s private school provision, one of several options open to home educators in this state. According to the state of California, my three older children are enrolled in a private school called Bonny Glen Academy. The "headmaster" is my husband, and I am the other member of the faculty.
When Wonderboy reaches legal kindergarten age, I can enroll him in our private school and turn down his IEP in lieu of an ISP, an Individualized service plan. This is how students in actual private schools can receive special education services like speech, physical therapy, and occupational therapy from the public school system. I’m still wading through the regulations, but there seems to be more flexibility with an ISP than with an IEP.
But Wonderboy won’t be legal kindergarten age until the beginning of the 2009-2010 school year. He misses next year’s cutoff by one week. I find it hilarious that I am suddenly going, Shoot, I can’t believe we miss the cutoff—in all other circumstances, I would be thrilled not to have to fuss with enrollment paperwork for him for an extra year. (Especially since kindergarten is not mandatory in California. Yet.)
For now, we’re solidly in IEP territory. And despite how complicated it has become, I don’t (yet?) regret pursuing speech and audiology services through the school system. I love the district audiologist. She is very good at her job, she’s flexible about scheduling, and her services do not cost us anything. If I’d foregone the whole IEP adventure, we’d be getting audiology services via the medical establishment, which means a significant expense of time and money.
As for speech, well, I’m on the fence. But that too is fodder for another post. It’s a big topic, so I’ll save it. This one is going to be long enough, I fear.
IMHO the school systems just don’t *get* the homeschooling mother’s
mentality of "I *can* and *will* do this at home because it is part of
my job as homeschooling parent" – we saw so many parents (good parents,
mind you) who just "left it all up to us" as "professionals" and never
really worked with their kids at home. Not that there was much TIME
with the kids coming home late from school, two income families and
many activities! I know I’m generalizing here, so I hope no public
school families are offended. There were some great parents, but many,
many hands-off parents, therapy wise.
and that is indeed what informs the school personnel’s decisions—that
and the related issue of parents filing suit against school districts
for failing to do enough. And knowing how hard some of my
public-school-parent friends have had to work to GET necessary services
for their children, I am well aware that this is a complicated problem,
a swinging door that smacks faces in both directions.
Sitting in that room, debating with the team, I knew I was talking
to people who think well of me, and the ones who have worked with Wonderboy do truly care about my son. Pam, I am quite sure, was enduring a
form of anguish in "having" to recommended against what she knew I
Not that her anguish excuses her for failing to tell me in advance
what she was going to do—if she wasn’t going to recommend cutting back
to one session, there was really no point in having the meeting. No
need to assemble the panel if you aren’t going to change the paperwork.
Really, what it means is that she didn’t have the courage to tell me
herself—she let the district rep, a stranger, do the dirty work for
her—and in quite intimidating circumstances.
It’s HARD to argue back in the face of authority. It does not come
naturally to me, let me tell you. The reason I can do it is because
underneath my oh-gosh-they’ll-get-mad-if-I-buck-’em insecurities, I
know that in truth *I* am the authority. I learned this during our long
ordeal with Jane’s cancer. It took me months of hospital living to get
to a point where I could be "frank, firm, and persistent" with doctors.
I had to assimilate the knowledge that although they knew more about
fighting cancer than I did, I knew more about my child. I am the
authority on that subject.
Back to Amy’s point. I know that my decision not to avail myself of
the very good deaf/hard-of-hearing preschool program our district offers is utterly
mystifying to several of the members of the team. You can practically
hear them thinking, "But…you could have him off your hands for hours
every day!! Whyyyy wouldn’t you want to take advantage of that break?
As you say, you’re juggling a ton already…"
"She homeschools her children," I heard one team member whisper to
another. "OHHH," the other, who was meeting me for the first time,
responded, as if that explained so much. Heck, maybe it does.
In the interests of fairness, I want to clarify that the person who
whispered "She homeschools" was my biggest advocate in the meeting. I
think she really was offering that information to her colleague as a
relevant fact: this is a mom who is very involved with her children’s education. It was the colleague’s response that was so telling. "Ohhh," in a tone that conveyed: "So that’s why she’s being difficult."
(More fairness! By the end of the meeting, the Ohhh woman seemed to
have completely revised whatever negative impression she had of me at
the beginning. She told me I should write a book. Hee.)
I want to reiterate that although I was in opposition to the team’s
initial decision, this wasn’t an overtly hostile environment. These are really
nice people, dedicated to their jobs, working from their best
understanding of how kids learn, how families work, what the law says,
and how the system works. Almost by definition, a homeschooling family
is going to run counter to that understanding. What we believe about
how kids (people) learn and how families work tends to be dramatically
different from the views of mainstream educators. (For one thing, I
don’t think I know any homeschoolers who would commit to a definition
of "how families work"—the "how" is different for every family!)
There was a point in our meeting when it really looked as though the
team was not going to budge on the reduction of service. The
conversation had become about scheduling: since our current schedule
doesn’t work, what other options were there. As you may recall from last year, when I first came
seeking speech therapy, the district’s strong recommendation was for me
to enroll Wonderboy in that five-day-a-week deaf/HOH preschool program. I declined, for a
number of reasons.
One thing I was interested in for this year, though, was having him
receive speech therapy from one of the two therapists involved with
the preschool. Since they work with deaf/HOH kids, they are specially
skilled in meeting the kind of speech needs my son has. (Our current
therapist’s specialty is preschoolers, but he is her first HOH child,
and she is learning as she goes. She makes some classic mistakes, such
as forgetting that he can’t hear her when she whispers. But again, that’s for another post.)
We discussed a number of options. He could get his one-on-one speech therapy at the preschool. Pam and I both wondered whether that would be too distracting, to have a bunch of other kids around doing other things during the session. The preschool teacher said that no, it was a play-based program, so Wonderboy could do whatever he liked, and the speech therapist would simply follow him around the room, working speech into Wonderboy’s activities.
"Um, how is that any different from what I do all day at home?" I asked. I reminded them that his IEP doesn’t say anything about developing expressive and receptive language. He has no delay in that area—in fact, he’s ahead for his age, since (speaking English and ASL) he is bilingual.
His IEP goals for speech—there are only two goals, by the way—involve the production of five new sounds. That’s all the district is supposed to concern itself with: helping him gain a finite number of consonants. He has already gained three of the five sounds specified in the goals.
Back to the drawing board. If he were enrolled in the preschool program even part-time, they told me, he could get speech during the small-group session that would be more in line with the goals we’re working toward. Would I consider a two-hour time slot, once or twice a week?
I gave this idea serious consideration. Once a week, for speech and audiology? It might possibly work…he’d be working with the deaf/HOH-trained speech pathologist, for one thing, and having seen her at work (she attended one of our sessions to give Pam some pointers), I was very open to the idea of finding a way to work with her.
But then it hit me, and I asked the question. "What happens if I
agree to this, but in a few months’ time I have determined it not to be
in his best interests? What if I wanted to go back to what we have now,
the 30-minute private sessions?"
There was a pause, and the district rep exchanged glances with the others.
"Well," she said slowly, "we would have to have another meeting like
this one, and the team would have to agree that he would be best served
by pulling him out."
"In that case," I said, "we can stop talking about this option right
now. And it’s too bad, because I do think there are some strong
arguments in its favor. But I can’t take the risk of running into
another situation like this one. If there is any possibility of my
having to walk back into this room and be told by a panel of people
that I can’t do what I know to be in the best interests of my own
child, then forget it."
I worded it strongly because I needed to make sure they understood
the point. I will not cede my parental authority to a panel of school
district personnel. End of story.
This statement seemed to hit home. From that point on, the tone of
the meeting was different. I think several of the people in the room
had assumed I was completely closed to the idea of any participation in
the preschool program because of some anti-school prejudice.
In fact, there had been a funny moment earlier in the meeting when I
teased the audiologist for making exactly that assumption. She
mentioned that she knew my older girls go to "enrichment activities"
(her words) like music and dance. "Maybe," she suggested, "you could
think of the preschool program as an enrichment activity for Wonderboy."
I grinned. "You don’t have to come up with other names for it," I said. "I’m not going to break out in hives at the word school."
There was a ripple of laughter, and it was clear that a few people at the table had assumed I would categorically refuse anything with a schooly label.
"Listen," I said, still smiling but also serious, "what I’m about—the reason I homeschool—is because I’m about individualized education, the freedom to do what’s best for each individual child."
We all had a nice chuckle over it, and someone else joshed the audi
for trying to slip something past me, and she said she wasn’t slipping
anything past me, she didn’t think I missed much. Which was nice of
her, but thinking back over the meeting, I see that there were some nuances I nearly missed. (And probably some I did miss, but I wouldn’t know, would I?)
I almost missed the fact that opting for a two-hour dropoff at the preschool would have meant increasing the level of service—when here I was fighting to decrease it in the first place.
I almost missed the fact that dropoff therapy would negate the most important aspect of our therapy experience: I wouldn’t be there to learn techniques and activities to use at home.
It rather amazes me, now, looking back at the meeting, that I came
close to making such a colossal mistake. I’m sharing that part of the
story here, embarrassing as it is, because I think it speaks to
something very important for parents to know as they head into meetings
like this. When you’re under that much pressure, and facing disapproval
from figures who speak with authority, it is very, very easy to lose
track of what you want and what you know to be true.
You are trying to be reasonable, and you begin to think in terms of
compromise, because to do anything else is to make yourself a royal
pain in the tuckus. But there are certain things you should never have
to compromise, and your child’s best interests ranks mighty high on that list.
So the way it turned out is that I said, "Listen. This is intensely frustrating. What you are saying—what several of you have articulated very clearly—is that you agree that because we do so much work with Wonderboy at home, and because his life is filled with so many other appointments eating up our time, and because he is making such terrific progress, it makes sense to cut back to one speech therapy session a week. But you say you can’t agree to that change because it doesn’t look good on paper. Pam, what you said was, ‘On paper it’s hard to justify a reduction of services for a child with that level of need.’ So what I’m hearing is that you are going to stick to a decision we all agree is not in the best interests of this specific child, because of a fear of how it looks on paper."
Some of them were nodding. The itinerant teacher, the one whose curriculum I had declined last year but who came to our house a week ago for the annual 30-minute consult I did consent to (and that in itself is another whole post topic), spoke up on my behalf. She said that having seen Wonderboy in his home environment, having heard him chatter, having watched how I interact with him, she had to admit that there wasn’t one single thing she would recommend to a parent that I wasn’t already doing on my own.
She was very complimentary. I was grateful, and yet it was strange—it felt like having a great defense witness testify for me when I shouldn’t have been on trial in the first place. It bothers me, still, that part of what eventually won me the result I was after was that I had allowed a district employee into my home, had been observed and passed muster.
Believe it or not, long as this post is, there’s a lot I haven’t told yet. Maybe I’ll get to it later. Maybe I really will have to write that book.
You know the end of the story already—the end of this chapter, at least. After a whole lot more discussion, the team agreed. We signed the papers. Wonderboy will attend speech therapy once a week. His IEP expires in January and we’ll have to reconvene the panel at that time, to revise, update, tweak.
That means this isn’t over. But I’m learning more about the system all the time.
As some of you guessed in the comments, the meeting I alluded to the other day was a doozie. It will probably take me several posts to sort through everything. But let me spare you the suspense and say this: It ended well. I got what I wanted. But it took two hours of intense discussion to get there.
Remember last winter when I wrote about getting Wonderboy’s IEP in place? Remember how I said:
Which leads me to a very interesting and important thing I learned at
the end of the meeting. I need to look into whether this applies to
California only or the entire nation. As my pen was poised to sign the
final paperwork, the psychologist notified me (as she is legally bound
to do) that once the parent signs the IEP, the child is officially "in
the system," and the parent can’t just decide later to pull him out of
services without a big to-do. From that point on, the appropriate district personnel (in this case, speech therapist) must agree that the child no longer needs these services in order to cancel them.
You know, I worked pretty hard to make sure my son’s IEP was worded exactly as I wished it to be, lest this section of the law come back to bite us later. But you can never, never be too careful. I should have been, it turns out, even more careful than I was.
The IEP says Wonderboy will receive 60 minutes of speech therapy a week. That’s what we did last year, in two 30 minute private sessions. He did very well, and because I was present during the sessions I was able to repeat the activities at home, daily. He made great progress and gained several consonant sounds. It was very exciting.
But the two-day-a-week schedule was difficult to juggle. He sees a number of other doctors, and that adds up to a lot of appointments. Add in the girls’ activities, and it makes for a great deal of running around. The speech therapist and I agreed that Wonderboy was making fabulous progress. When we started back up after the summer break, I said I wanted to cut back to once a week.
She was hesitant, worrying that if he only saw her once a week, she wouldn’t get as much out of him in the sessions. That wasn’t a concern for me: I don’t really care how much she "gets out of him" (meaning, how much he speaks for her in session); I care about whether he is learning to make new sounds. At home, and out in the world, he is quite a chatterbox—and that includes using the consonants we’re working on in therapy. When the speech therapist puts him on the spot, he clams up, grinning his funny grin. Often he’ll be quiet for 29 minutes of therapy and then burst into conversation on our way out the door. The speech therapist and I have often laughed about this.
So we talked about my reasons for wanting to cut back, and we threw around some other ideas for scheduling—the current schedule doesn’t work at all for us anymore, not with a new year’s lineup of activities for the older girls—and she suggested that we could look at switching to another time with another speech therapist, if her availability didn’t work out for us. We talked about all of that, and none of the options seemed to fit, and so we came back to my preference to cut back to one session a week.
To do that, she said we’d have to set up a meeting with the "whole team" to revise the IEP. The "whole team" means all the school district personnel legally required to sign off on this document. It’s a big slate, in Wonderboy’s case: our speech therapist, the speech pathologist connected with the district’s deaf/hard of hearing preschool program, the preschool teacher, a district rep, an early childhood education rep, the district psychologist, the deaf/HOH itinerant teacher, the district audiologist, oh, and me.
I’m only being a teeny bit snarky in listing myself as an afterthought there. You see, and this is the most significant thing I have to say on the subject of the IEP, the parent is considered "a member of the team." Not the coach, not the person in charge. A member, a single vote.
It is for this reason that a parent must exercise extreme caution in signing an IEP. As I said before, don’t make a mark on that dotted line until you are 100% satisfied with the language in the document.
But I’m jumping ahead of my story. As far as I knew when I walked into that meeting on Tuesday, I was there simply to sign paperwork: the team was assembled to sign off on my request to cut back from two weekly speech therapy sessions to one.
And then, after the introductions around the table—a little low table in the deaf/HOH preschool room, with all ten of us squinched into those tiny little kindergarten chairs—they sandbagged me.
The district rep was leading the meeting. We were there, she explained to the room, because I had requested a reduction in services and the speech therapist had declined the request.
I looked at our speech therapist. (I should give her a name. Let’s call her Pam.) I was shocked. She hadn’t indicated in any way that she was going to recommend against granting my request.
(Do you know how disturbing I find it even to use the words "grant my request"? The very idea of having to ask permission to do what I know to be best for my own child—it’s repugnant.)
Pam looked like she wanted to sink under the table. "I’m so sorry," she said miserably. "I just—I mean, going by Wonderboy specifically, knowing you and how much you work with him, I know he’d be fine, but it’s just—well, a child with his level of need—legally, you understand—I just can’t see how I could justify it on paper, that a child with his level of need could have a reduction in services."
"A child with his level of need"—that’s a key phrase, one which would be used often during the next two hours. It quickly became clear to me that the district personnel were making a distinction between my son and his actual, specific circumstances, and a generic "child with his level of need." Over and over, I was told—not just by the therapist, but by several of the other people on the "team"—that it was clear Wonderboy’s situation is unusual (hearing loss is but one of his many issues; we juggle a boatload of medical appointments; his parents and siblings work with him constantly at home; and so on) and they all had confidence that he "would do fine" with one session a week, but "legally, a child with his level of need…"
I could make this a very long story. I will probably examine specific points of the discussion in future posts. I think this is an important issue, not only in regard to my family, but in regard to all American homeschoolers—and, indeed, parents in general. We are, as a country, quietly ceding our parental rights to the state.
But I will not cede mine without a fight. In this case, I did eventually bring the "team" round to my point of view. It took two hours of intense discussion. Not heated discussion; no voices were raised. But I had to be frank, and firm, and persistent.
In the beginning, when the district personnel were holding fast to their position, I was told that if I could not agree to stick at the 2 sessions per week, the next step would be to go to mediation, and after that (if we refused to comply with the decision), arbitration. This is California law. As I said in my first IEP post quoted above, in this state, once you sign the IEP, you can’t withdraw your child from services without the consent of the team. I should add "or reduce the level of service" to that sentence.
This post is to be continued. There is lots more to tell (I haven’t gotten to the most outrageous part), and lots to talk about. For now, it’s enough to be able to say that I convinced the team to look at my specific child, not "a child with this level of need." We’ve cut back to one session a week. I’ll continue to work with him every day at home. That’s my job. I’m not a team member. I’m his mother.
Monday morning, early. Wonderboy and I are off to speech therapy in a few minutes. His sessions have been going wonderfully well, and he is now regularly saying B and P sounds. This is huge progress; two months ago his only consonants were M, hard G, K, N, and an occasional H (as in "Huh moni!"—that’s "Good morning" to you conventionally annunciating types).
He loves Miss Tammie, the speech therapist, and our fun half-hours in her room, playing games, singing (okay, listening to Miss Tammie sing), putting the buh buh baby and the puh puh popcorn on the buh buh bus, and the puh puh puppy goes in the buh buh box.
His astonishing and rapid progress is due in large part, I believe, to Tammie’s use of something called "Visual Phonics." This language development program is actually new to Tammie, and we are more or less learning it together. The concept is truly brilliant. In Visual Phonics, a hand sign is assigned to every single sound. It’s like taking the sign language alphabet (with which Wonderboy is already quite familiar, though he does not sign it himself yet—when he was two, his favorite way to fall asleep was to watch my hand while I signed and sang the ABCs) one step further.
For example, there a sign for the B sound (buh). You use the ASL sign for B, a flat hand, fingers together and pointing up, thumb folded over the palm, and you hold that handshape up by your mouth, moving the B away from your lips as you say "Buh."
Not all the Visual Phonics signs are based on the ASL alphabet; the P has your fingers sort of exploding away from your lips. Really, it hardly matters WHAT the signs are; the brilliant innovation was in attaching signs to these small units of sound. There are signs for every speech sound, including consonant blends and all the vowel sounds, including diphthongs.
Wonderboy GETS sign language; he knows how to connect a sign to a spoken word to a thing or idea. He clicked with the concept of buh and puh immediately, just as soon as we turned the sounds into Real Things for him by giving them signs.
I missed a chance to go to a Visual Phonics training session last month, but I’ll share more about the program as I learn about it. It is primarily intended to help kids struggling with reading, but Gallaudet and other institutions have recognized its immense value in both reading and speech instruction for deaf/hard-of-hearing kids. I imagine Visual Phonics is going to be a big part of our lives these next few years, first in helping my boy learn to speak English, and later in helping him learn to read.
Buh buh brilliant. Also, buh buh bye—I’ve got to run or we’ll be late!
First things first: I am happy to report that Friday’s adventure in ick wasn’t the first wave of something worse; Wonderboy stayed healthy over the weekend. Must have been carsickness (again).
But I promised to tell you how the IEP meeting went. It was a very good meeting and I got exactly the outcome I was looking for: Wonderboy will receive speech therapy and audiological services (ear molds, hearing tests) from our local school district.
There were six people at the meeting, plus me (and the boy and the baby). Audiologist, district school psychologist, two speech pathologists, itinerant deaf/HH teacher, deaf/HH preschool classroom teacher. That’s six, right? A goodish crowd. All very nice, all respectful and eager to meet us where we are.
After introductions, we discussed the various options open to my boy (preschool, private speech therapy, etc.). We talked about the results of his speech evaluation and his history. The deaf/HH preschool teacher described her program, which is a four-hour/five-day preschool in which three other students are currently enrolled. It sounds like quite a nice little program, but I don’t think it best fits the needs and situation of Wonderboy and the rest of our family, so I declined that option, choosing private speech therapy sessions and audiology services instead.
Then we looked at the "goals" that had been drawn up by the speech therapist, itinerant deaf/HH teacher, and audiologist. The way it works is you must spell out, on special forms, the goals you’re aiming for and the specific services that apply to each. For example, one goal for Wonderboy is to be able to make several additional consonant sounds in a year’s time. ("Child will correctly produce consonant-vowel-consonant words containing the phonemes b, p, m, t, d, with amplification [hearing aids], with 90% accuracy.") (That doesn’t guarantee he definitely WILL meet that goal by this time next year, but that’s what we’ll be aiming for.)
I was in complete agreement with the speech therapist’s goals and recommendations. I approved those pages and they made it into the final IEP.
However, I did not agree with the necessity of the itinerant teacher’s goals/recommendations. Her goal had to do with language development—not sounds, but using words and sentences—and I do not see a need for outside help in that area. (To put it another way: we can homeschool him in that just fine.) The teacher, who is a very nice and pleasant person, described a curriculum she would like to use—both directly with Wonderboy and "training" me to use it myself. I had to suppress a smile. The curriculum is designed to get a child talking about all the different parts of his day, using conversation about household objects and activities to develop facility with sentences and individual parts of speech.
I think we’ve got that covered.
So we scrapped that goal and its accompanying recommendation for services. This was not a big deal; there was no tension involved. As the parent, the final say on goals and services is up to me. But it was also up to me to decline this section of the proposed IEP.
I mention that here because I think it’s an important part of understanding the IEP process. The school district can make recommendations, but the parent must approve every syllable of the documentation. If you’re not happy with what’s in the IEP, don’t sign it until you are!
Which leads me to a very interesting and important thing I learned at the end of the meeting. I need to look into whether this applies to California only or the entire nation. As my pen was poised to sign the final paperwork, the psychologist notified me (as she is legally bound to do) that once the parent signs the IEP, the child is officially "in the system," and the parent can’t just decide later to pull him out of services without a big to-do. From that point on, the appropriate district personnel (in this case, speech therapist) must agree that the child no longer needs these services in order to cancel them.
This is a significant point. Apparently, it is a recent change to the law (again, I’m not sure whether we’re talking state or federal law—I’ll get back to you on that) during the past year.
Naturally, this caught my interest. I don’t like to be boxed into anything! Now, this news did not affect my course of action, because Scott and I had already made the decision to access these services through the school district instead of seeking them privately. We weighed the pros and cons before I ever picked up the phone to call the district.
But I was curious about how exactly this provision works. I asked what would happen if a parent wanted to pull her kid out of services, say, a month or two down the road. One of the teachers explained that if the speech therapist (or physical therapist, OT, etc) did not agree that the child’s special needs no longer existed, the case would have to go to mediation. If an agreement could not be reached—which I assume means "if the parent still wants out"—then the school district would initiate a due process hearing.
Got that, homeschoolers? If you decide to tap into the public schools’ special-needs services (which is your right), be sure you’re completely comfortable with the goals and services spelled out on the IEP before you sign it. Because once you do, you’re committed. Or rather, your child is. In California, at least.
So did I sign, you’re wondering. Yes. I do want to access the speech therapy and audiology services (ear molds, hearing tests) to which my son is entitled. After all, my tax dollars are helping to pay for these services. But this new law makes it all the more important to do your homework and to read the paperwork with an eagle eye. Make sure the IEP says exactly what you want, and not a syllable more, before you give it your John Hancock.
Related posts on accessing public services for special needs: