I must admit that our caseworker at our HMO is a lovely woman. She diligently copies inches worth of articles off websites (it would be okay just to give me the url!) and gives me brochures on expensive conferences and camps for kids older than the Cat, but with similar symptoms. She tells me about meetings for parents of kids in the same boat as the Cat. She encourages me to start my own organizations. (In part, I started posting about ASD as a hope to join the online community of parents facing the same difficulties, though I don’t have the time to invite everyone over for tea in a spotless house with no children to be seen.)

The problem with appointments with the caseworker is that I feel as though I have to make progress to “report” at our (you guessed it) “Monthly Progress Report” sessions. The resources she provides are all external. Nothing can be done within the HMO. Nothing will be paid for by the HMO if I receive therapy or services from one of those shiny brochures, even though the HMO cannot itself provide such services. So really, the “progress” is for me “How much did you read? Do you still oppose medication?” and for her “what other brochures will you produce, as though I have time to read them all?” Frankly, I don’t understand the purpose of these meetings in their isolated-selves. From what I gather, I have to continue a presence:

a) to keep my son’s “case” open, in case we decide to medicate him or if he needs future services when he is some lonely drug dealer who couldn’t graduate from high-school as they suggest he will be.

b) for our case worker to be an “advocate” for us in obtaining the “proper” special-education services for him when/if that is beneficial

c) to remain “in the system” so that when the planned “social skills” group and any other ASD-specific resources become available in the future at the HMO, I will be informed.

At our last meeting, I again explained that the Cat was deemed not eligible for “special services” from the school district. Our caseworker takes her role as “advocate” seriously, so wanted to pursue the matter further, even though I had been satisfied with the school district’s findings.

Their recommendation was that I pursue special education only if the Cat’s difficulties really did hamper the way he behaved in school. Since Kindergarten is still a year off, it seemed reasonable to allow my son to mature a bit before attempting therapy that they think he didn’t need. I agree that “early intervention” is important, but the only “special services” they offer was in speech therapy, and he tested completely normal in that area.

But my HMO caseworker told me flat out that kids with the Cat’s diagnosis need help in speech. She further said that his diagnosis report clearly stated that he was deficient in speech. She made a big deal about how the school district’s findings must have been faulty.

I countered that I knew that Arik was “himself” during the school’s speech evaluation, whereas he had been bullied and was scared during the long evaluation from Poopyhead several months prior.

But the caseworker insisted that the school’s method of testing had not been thorough enough, and that she knew that kids with PDD have speech delays.

I don’t know my own kid? He by definition of diagnosis must have difficulties that others do?

Yes, he may be speech-delayed in certain areas, but he is learning. He isn’t so delayed as to warrant a time-exhaustive series of therapy appointments. If there is still a problem in six months to a year, then I will be open to ideas. But the Cat can spell and write better than many kids his age, and can use vocabulary that I don’t hear out of others’ mouths. The categorization and social talk are things that will become easier for him as he continues attending preschool. And if not, then we will intervene.

My concern about the Cat is not the speech, it is the crawling on the floor, being a cat. It is social convention. It is following instructions (which happen after a routine is set.) It is the difficulty with new situations. These are issues that group social therapy or behavior therapy would address, not speech therapy. (There is something called “social speech therapy” which might be a good option for him, but that is a private clinic not affiliated with the school district or our HMO.)

The other issue that our HMO caseworker is pressing is getting the Cat into a government funded center for disabled individuals. Autism apparently fits within their bounds (although I am not certain if “high functioning” autism does.) The types of therapy and services haven’t been elucidated to me, so I do not know of what benefit this center could be for our particular situation. When I ask, they respond that the services are dependent upon how the child tests. Well, what type of services are available? And that caseworker tells me there are too many to list. My HMO caseworker had mentioned that this center pays for “respite” for the primary caregiver, but that they don’t actually provide the sitting services nor do they have recommended places where such a child could be cared for appropriately. The “Government Sponsored” (GS) caseworker said there are behavioral interventions, but not social interventions.

Frankly, I don’t know why I am bothering trying to get “services” if I don’t think they have services that will help the Cat. But I continue in the hopes that something may lead to something else, and so forth.

So I have gone through the mountains of paperwork for the GS Center and had an in-home evaluation with the GS caseworker. (That was a story in itself. She could not spell "tot" and frequently asked me to repeat English words she did not understand.) They set up a set of evaluations for the first week in September with a psychologist. They wrote me a letter saying that he would be evaluated in the GS Center on Wed Sept 7th, and then would be observed in his school environment on Thursday, September 8th.

There are two problems (and perhaps more) with this approach:

1) The first day of preschool is Sept 7th. He cannot be at the GS Center. Along the same lines, he is NOT in school Thursday, Sept 8th.

2) Even if he were in school that Thursday, I do not want him being evaluated at the start of the school year. This unfairly sets him apart from the other children off the bat. Although his behavior when confronted with new situations is problematic and therefore in need of attention, I feel that his initial in-classroom evaluation should reflect his “normal” behavior, not his scared-to-death behavior.

So I called the GS caseworker, attempted to explain the situation, and asked to postpone the evaluation until October or November, allowing the Cat to acclimate to his classroom, peers, and teacher.

She told me I wasn’t being cooperative and stated that we would have to close the case and reopen it “when he is ready.” Stunned, I agreed, fearful that reopening the case would entail another mountain of paperwork, or at least a delay. Getting an appointment for 6 weeks from now would probably take an additional 6 weeks to set up, so why not set up the appointment now instead of tacking on the time at the end?

I tearfully explained the situation to my husband. To help, he sent an email to the GS caseworker asking for clarification of why an appointment for October or November could not be made at this time and why my request had been viewed as uncooperative.

She responded with a poorly written missive containing multiple grammatical errors and misspellings, which highlighted the difficulty I had in trying to communicate with her. If she cannot understand me, and I cannot understand her, how can we work together to help my son? I have been guilty of needing the grammar police, and my misspelling of “shirt” the other day is evidence that my spelling is not always up to par, but on a whole, I believe that I can make myself understood.

Nonetheless, a “situation” had been created. (And we all know how email tone can sometimes be misunderstood!)

She explained to my husband that there is a 120 day window in which the center must obtain resolution of a case. My request for a November appointment would put the “resolution” outside of that window. She hadn’t mentioned this to me.

She suggested having the in-office appointment only within the window. Okay, that sounds like a good compromise. Too bad she hadn’t suggested it to me this morning.

She also made a big deal about how it is unwise to delay the evaluation because by doing so, we were doing a disservice to our child because helping him would be more difficult the more time passes. I am offended when people lecture me about “getting help” for my child.

Here are some of the statements from her email to my husband, and my rebuttal: (I did not send an email to her stating what I list here; rather, these are my thoughts as I read her email.)

At first she ask me to change the school visit for friday instead of Thrusday and it would not be a problem, I would like that you consider the amount of people that we have waiting for an evaluation and that they deserve to be notify with ahead of time to come for it.

This makes it sound as though I had requested an appointment in September and then changed my mind and asked for Oct/Nov.

I told her that the appointment would have to be cancelled for two reasons. I explicitly said, “TWO REASONS.” I gave the first reason, which was that he wasn’t in school on Thursdays. I then gave the second reason, which was that I wished for him to have time to acclimate. But after I gave the first reason, she started looking up a new appointment on the computer; I had to interrupt her to finish my sentence. So I don’t think she understood. She makes it appear that I was making a demand, and then reneging on it to make a different demand.

According to First Steps program the first 3 years of life are extremely important to take all the steps to help a child with disabilities.

Yes, and that ship has sailed. He is 4.5 years old. Don’t preach to the choir. We are attempting to help him.

As soon as the child turns 6 years old his development could plateau and it is more difficult to help him out. Do not delay to know what is going on with him.

Yes, again. We are doing what we can. My delay is not out of laziness; it is out of a desire to not “blow” the evaluation on a time where we already know the Cat will be at his worst. I am concerned that the impact of starting off “on the wrong foot” for the school year could be large. I think singling him out initially is not a good idea. Don’t try to scare us into action.

I think also it is very important to observe him in a new environment and see how he reacts. You know that typical children and a child with disabilities will behave different. On the other hand his teacher will have information even if [the Cat] is new at school.

My impression – and he is MY child, not hers – is that an evaluation would be more useful after he has had time to acclimate to the new situation. Although his behavior in new situations is problematic, I don’t think that addressing it at the start of a school year in front of a new teacher, new classmates, and new classmates’ parents is a good idea. The “new information” that a teacher could obtain during this evaluation is more of a psychological framing issue (Oh, he is the “special” kid) than information of true value. We know that he will be fairly comfortable within a couple weeks. It is the behavior from the third week to the end of school that we want to make sure is okay. That is why an evaluation at his “best” might be more helpful than at his “worst.” If we can identify how he is different from the other kids when he has already become comfortable, then we can better know how to proceed. If he is “normal” but just a little “quirky” at his best, then we don’t have to worry so much. That is when we can identify ways to help with the new situations and transitions. Why hear what we already know will happen on the first day of school and have that haunt us the rest of the school year?

you can call me to talk about this matter and only thinking in [the Cat’s] welfare

This makes it sound as if I am being confrontational and pigheaded simply out of spite! Up to this point she had been a friendly woman. I don’t wish her any harm or trouble. But I feel misunderstood. Clearly she doesn’t understand the rationale for delaying the appointment. My husband and I are not stirring up trouble because we like stirring up trouble. Of course we are “only thinking [of] [the Cat’s] welfare.” Just because we don’t agree with having an evaluation the first week of school doesn’t mean we do not have his best interests at heart.

Disagreement of method does not indicate disagreement of purpose.

I realize she has to follow a set of guidelines, but I am frustrated that she didn’t mention the 120 day deadline to me. I would have easily agreed to an in-office appointment in September had that option been presented. The letter I received with the appointment information implied that the dual-appointment schedule must be kept on consecutive dates. The option of delaying the educational evaluation was not presented.

I don’t feel it is appropriate to make a point of lecturing us about receiving timely help for our child.

We are requesting something that will fit within the personality of our child such that the information we receive can be of the most value. (We don’t need to be told that he screeches and crawls around on the floor the first day of school. We do need to know if he does that after the first month of school, and if so, in what context, etc.)

I find it insulting that she seems to think she “knows” how best to help our child, and implies that by delaying we are doing him a disservice.

Sorry for the rant. But if others find themselves in the same boat, know you aren’t alone! It is tough to push forward when there are rules, regulations, and expectations (or lack thereof) for a particular patient with a particular “diagnosis.”

The Cat is a person. He is not a diagnosis. Don’t lecture us just because we question the most effective way to approach his needs.