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.

~~~

Amy commented:

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.

Yup,
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
wanted.

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.

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:

Beginning the Process
The Speech Evaluation
Getting an IEP

Last month I posted about beginning the process of setting Wonderboy up with speech therapy services through our local public schools. These things take time (especially during the holidays), and we are just now moving to the next step. Today will be the "goals" meeting with various district personnel to determine what will go in Wonderboy’s IEP, or Individualized Education Plan.

This important document will spell out what services Wonderboy will be getting from the district and what our goals are for his progress in the next six to twelve months. If he were enrolled in a public school, the IEP would also define what special arrangements would be necessary to help him in a classroom: accomodations such as an aide, an FM system, seating near the teacher, and so forth. (I’m giving broad examples here, not necessarily things that would apply to a three-year-old.)

In the home, meeting Wonderboy’s specific needs is much easier and more intuitive than would be the case in a preschool setting, so his IEP will serve chiefly to get him speech therapy. We have a couple of options for this, and part of my job as his "case manager" has been to educate myself about the possibilities. Our district does have a dedicated deaf/hard-of-hearing preschool classroom, and I have been strongly encouraged by district personnel to consider placing him in this class. I don’t at all mind their making a pitch for the preschool: it’s part of their job.

Neither do I have any qualms about politely declining the offer. Deciding what’s best for him is part of MY job.

Here are the steps that led up to today’s meeting:

• Knowing Wonderboy qualified for speech therapy, I called the district special education office and requested an evaluation. (Even if you are only wondering whether your child qualifies for services, you can call and request an eval. The purpose of the eval is to assess whether there is indeed a qualifying need. For children over three, call the local school district’s special ed office. For children under three, call the Early Intervention office. Google your town’s name and "early intervention" and you’ll probably find the number easily.)

• The special ed office asked me to fax over his IFSP (Individualized Family Service Plan). This is the equivalent of the IEP for three-and-unders. If we had not had an IFSP—that is, if I were seeking services for the first time—the special ed office might have asked to meet with us before setting up the eval, but not necessarily. The eval itself is what determines the child’s need for services. Certain medical information can be helpful, such as Wonderboy’s latest audiologist report.

• Special ed passed our name and number to the district speech pathologist (since I was asking for speech therapy). She called and set up the evaluation I wrote about in December. If I had wanted, a physical therapist could also have been present. (I opted to postpone his PT eval for a few months.)

• Also present at the evaluation was the district’s school psychologist. This is standard practice.

• The evaluation determined what we all already knew would be the case: Wonderboy does qualify for speech therapy through the district.

• Today’s IEP meeting was scheduled. This took some coordinating, as there is a rather large team of folks involved. This is why I think it’s important for parents to do their homework—especially homeschooling parents, but really it applies to all of us. It can be intimidating to walk into a roomful of school-system professionals. They are there to help, and as parent, you are the person in charge; but it can be hard for parents to remember that.

The "team" of people at Wonderboy’s meeting will be: speech pathologist, school psychologist, traveling deaf/HH teacher, dedicated deaf/HH classroom teacher, and district audiologist (yay!!). I think that’s it. And me, of course—on this team, I’m the coach!

• After the IEP meeting was scheduled, I got calls from most of the folks on this team. I had short preliminary meetings with the traveling deaf/HOH teacher and the school psychologist.

• Which brings us up to today. I’ll let you know how it goes.

Yesterday’s speech evaluation went very well. Wonderboy was obligingly talkative, so the speech/language pathologist (we’ll call her the SLP) was able to get a good idea of the range of sounds he can make. She was delighted, really excited, about the extent of his expressive and receptive language—his sentences seemed to thrill her as much as they do me. Of course, she could not understand much of what he says; his intelligibility to strangers is maybe 80%. But by the end of the session, she was catching a lot more of his words.

I had all the girls with me, of course, and they set up camp with their books and drawing materials at a table in the same room. They proved most useful in keeping the boy chatting; every time the SLP tried to get him talking about an object, he picked it up and trotted around to show his sisters, addressing them each by name.

"I can see you’re a big help with your brother’s therapy," said the SLP, which is absolutely correct. As we were leaving, she actually thanked the girls on Wonderboy’s behalf. It was a great moment. You always wonder what public school employees are going to think about your homeschooling brood, and it’s nice to leave feeling like you made a good impression. I really think she grasped the tremendous impact on Wonderboy’s progress (in both speech and motor skills) made by the constant interaction with his sisters.

All four of them! He considers the baby his special charge; he is always looking out for her welfare, bringing her toys, putting a pillow behind her when she is sitting on the floor. At the evaluation, some of his clearest words were about Rilla and the stroller.

We talked about the scheduling challenges, and as Peggy suggested in yesterday’s comments, the SLP is eager to accomodate our needs. There’s one 8 a.m. small-group session that currently has only two children in it; since my girls can come and hang out on the other side of the partitioned room, we should be able to make it work without too much disruption to our schedule (such as it is).

Next step: the Goals meeting. This is where the SLP and I will sit down with the district audiologist and the district psychologist to draw up the language for Wonderboy’s IEP. It’s scheduled for January, after the school break. Until then, we’ll just keep on doing what we’re doing, which seems to be working!