Healthcare Reform and Children With Special Needs

So, this healthcare reform thing. Yeah.

Here's my take -- bearing in mind, of course, that I'm not an expert. I'm not a medical professional. I'm not a lawmaker. What I am is the mother of a child with significant special needs. As such, I find it offensive and distasteful when I see that insurers are allowed to deny claims solely for business reasons.

In a denial I personally received from Aetna, I was told, "Not every medical service or supply is covered by the plan, even if prescribed, recommended, or approved by your physician or dentist. The plan covers only those services and supplies that are medically necessary and included in the What the Plan Covers section." (emphasis in original)

Here's the thing: Medically Necessary is TOTALLY DIFFERENT from WHAT THE PLAN COVERS. My pediatrician, my developmental pediatrician, my speech therapist, my occupational therapist, my son's teacher, and every medical and developmental professional who has ever evaluated him has said that his therapies and treatments are medically necessary. And yet, Aetna says:

"the plan does not cover [speech] therapy when it is used to improve speech skills that have not fully developed."

I have a hard time maintaining my composure when I read that statement. Why is it legal for a plan to exclude such coverage? Wouldn't it make more sense to cover such treatment, just as you cover it for someone who had speech function but lost it after a stroke? From a business standpoint, too, it makes more sense to cover these services for children. With intensive speech therapy in their youth, many children will go on to become contributing members of society. Without it, their chances for such success are much less.

My God, they say FLAT OUT:

"Examples of non-covered diagnoses include Pervasive Developmental Disorders, Down's Syndrome, and Cerebral Palsy, as they are considered both developmental and/or chronic in nature."

Words fail me.

WHY IS THIS ACCEPTABLE? Why is it legal for a company focused solely on profits to make medical decisions that affect my son's quality of life permanently?

Obviously, health insurance reform is necessary. But I'm not seeing how the new law helps me, or the thousands of parents like me, who have children with special needs. I mean, yes, we can get insurance coverage for them. Yay! But what good is that coverage if it doesn't cover anything they need?

(Side note, perhaps irrelevant: I'm also tired of hearing about how awesome Canada is. For some things, it's great, I'm sure. But I had a Canadian woman in my kitchen on Sunday who lives in Toronto and went to her doctor. After an exam, he told her she needed an MRI. The appointment was made for 2 or 3 months out. And when it showed THYROID CANCER, her radiation treatments were scheduled for another 3-4 months after that. What the what?)

I'd like to hear from the rest of you. Do you think the new laws will help you? How?

The IEP

D's annual IEP meeting was yesterday. (We're going to have a second meeting in a few weeks, to discuss placement for next year, which I'm sure will be fun if last year was any indication.) So this meeting was solely to talk about our goals for the remainder of the school year.

Unbeknownst to the IEP team, I had actually done a little bit of research and preparation for this meeting. So I was ready, and taking notes.

We went over the short-term goals, which were pretty good, on the whole. There are a few things there that I know will be hard for D. to do, but that's good, I think. Pushing and challenging are good things.

As we reached the end of the written goals, I said, "Earlier this year, we talked about having D. spend some time in the regular ed classroom, even for just a few minutes, so that he could see those kids modeling appropriate behaviors. Have we been able to implement that?"

Now, I was pretty sure that had not happened, because the regular classroom is actually a co-taught classroom of general ed kids and a few of the special ed kids along with their teacher and aide, and the teacher is the special education coordinator (SEC) who suggested life skills last year.

"Well, no, because we would have had to go to ARD," she said, and I felt like shouting, "That's NOT what you said when we discussed it," but I didn't. Instead I said, "Well, we're here now." And I smiled broadly, all sweetness and love, and there is now a NEW ITEM in D's IEP that says that he will join the general ed class for up to 1 hour a day, 4 days a week, for additional academic and social learning opportunities.

AND THEN. We kept going, and when we got to the part where they say, OK, now sign it and let's go, I said, "Actually, I'd like to add a parent input statement." And BOY, HOWDY did the jaws drop.

"Well, you'd need to have it here," said SEC.

"Actually, you can call a recess, and I can present it to you for, say, Monday," I said, still all honey and molasses, and they were caught. CAUGHT!

Hee. It was awesome. And now I am working on my parent input statement, and I will submit it on Friday, because next week is actually spring break, and I just feel empowered.

Mother F(ill in the blank)

Dear Aetna:

Thank you so much for the bill you sent my son's speech therapy provider for all the speech you covered in the past, since you didn't mean to cover it. I totally understand that you accidentally told us you would cover it and slipped up even more by paying claims for a while, before deciding to stop with no warning. It's also really helpful that the speech therapy provider has added the amount you billed them back onto the total amount we own them, bringing it to the equivalent of several months of mortgage payments for us.

Bite me,
WG

I swear to God, Aetna, you are making me INSANE, and I'm probably not covered for that.

Yesterday, we received a letter from Aetna, in response to our second appeal. Among the highlights:

The appeal stated that D. had a high arched palate consistent with the diagnosis of Sotos syndrome. This is a congenital defect and the cause of his delayed speech. Prior to seeking speech therapy Aetna advised D. would be eligible for speech therapy benefits. You feel Aetna should pay claims based on the coverage you were provided by Aetna Member Services.

Medical records supplied by [your therapist] indicate D. was diagnosed with Sotos Syndrome at the age of two by Texas Children's Hospital. Medical records do not support a congenital defect; as a result, benefits are excluded.

REALLY? I mean, REALLY? You mean to tell me that because my son was not diagnosed with his MUTATED DNA AT BIRTH, it's not a birth defect? REALLY????

OK, so obviously, the person who wrote this letter has NO IDEA what Sotos syndrome is, and could not be bothered to (1) be consistent with the capitalization, (2) do even the MOST CURSORY GOOGLING, or (3) God FORBID, speak with AN ACTUAL MEDICAL PROFESSIONAL.

But let's continue.

Furthermore, we were unable to locate phone records prior to treatment that confirmed speech therapy would be covered for delayed speech.

You'll forgive me, Aetna, if I say that is just plain and simple BULLSHIT. You can't find the records? Whatever. PROVE THEY DON'T EXIST.

But my FAVORITE part? Oh, that's towards the bottom of the second page. It says:

Speech therapy has been denied according to your plan benefits. Speech therapy services that were previously paid will be adjusted due to the exclusion of your plan.

You know what, Aetna? It's on. IT IS FRIGGIN ON.

We are consulting lawyers today. I am hoping to find someone who can file not under ERISA, which is heavily weighted in favor of insurance companies. I want a jury trial. I have visions of a John Grisham hero-like lawyer taking on our case for free, because I'm cute, and winning. I will also settle for something less dramatic. My brother's father-in-law is a lawyer in another state, and he called this morning with some questions, some advice, and some ideas, so we'll see what happens next. But IT. IS. ON.

Unrelated

1. On Friday morning, I noticed that the light in the kitchen was casting a fairly yellowish glow. It's a fluorescent fixture that normally throws a white light throughout the space. I walked over to investigate and thought, "Huh. It kind of looks like the fixture is full of...water." And so when Mr. WG returned home from morning prayers, I brought him over to see. "Oh, crap," he said, and that about sums it up.

He disconnected the electricity, climbed onto the island, and touched the fixture -- which sent a tidal wave of water gushing across the kitchen. Which is always a fun way to start the day, particularly a Friday, when I have to cook for Shabbat.

It was yet another pipe that had burst, and now we have a lovely hole in the ceiling, a pipe with a clamp, and no light fixture. All should be repaired soon. Well, not the pipe. That's not getting repaired anytime soon, because the only real fix is a whole-house repipe, and we're not doing that. We're just going to keep clamping these pipes as they explode, and one day we'll have no water pressure left at all. It's overrated, anyway.

2. We have offered Z. $100 if she can toilet train J. in two weeks. If she can do it, it will be the best $100 I have ever spent.

3. The therapy center called today. They know we're in the process of appealing Aetna's charming decision to deny D's speech therapy, but there's the small matter of the $2k that we owe them, and could we perhaps pay that? Mr. WG explained that we prefer to first ride out the appeals process. He explained that if we exhaust all our appeals and Aetna still won't pay, we will pay the balance due, but he doesn't want to make a payment before then. They repeated their desire to be paid. Mr. WG repeated his side. This happened several more times, and now I'm not sure if I can go back there on Monday for OT, which so far has been covered. Oy.

4. D. is perilously close to reading. He can identify all his upper and lowercase letters and the sounds they make. The other day, we used magnetic letters, and D. sat and carefully sounded out, /k/, /a/, /t/. Then, he moved his finger under the whole word, and slowly and purposefully said, "umbrella." So, not quite, but getting there.

5. While I was in the middle of writing this, a letter came from Aetna, but let's save a little something for later, OK?

1. Thank you, thank you, thank you to all of you who have emailed and mailed to help my friends. I am overwhelmed at the generosity of everyone. Truly. Thank you. I will keep you posted on the updates -- it looks like the family will be in the States in March for the surgery. Possibly sooner, pending scheduling.

2. I want to send D. to a Jewish special needs summer camp. Of course, the very first thing that they want is a psychological eval, not more than two years old. Followed by:

social history (also not more than 2 years old), IEP (current), educational eval (not more than 2 years old), related service evals (current), medical and immunization history, neuro and/or psychiatric eval (if applicant is currently on psychotropic drugs) (!), and a recent photo.

Oy. Whatever happened to name, mom's cell phone, general permission slip for field trips?

Also, there is NO WAY IN HELL that we can afford this camp, which is heavily subsidized for New Yorkers. So we are trying to work out a deal wherein I would write for them and they would let my kid go for free or very reduced tuition, and if that doesn't work, you will notice an abrupt halt in my blogging, because I will shoot myself in the head.

3. We also want to send our daughters to Israel for the summer. Actually, my almost-11-y-o (I KNOW) wanted to go to sleepaway camp, and when I checked the prices, I laughed aloud. Not with glee, of course, but with actual, genuine humor, as in Ha ha, that is very funny! My daughter is so not going to sleepaway camp! And it turns out that tickets to Israel are WAY CHEAPER, so that's what we're hoping to do.

4. If three of my children go away for the summer, we will have only J. and Baby A. here for the summer, and it will be like we are a young married couple on vacation!!!! I cannot IMAGINE the copious amounts of free time. Wait, yes I can, and I'm doing it RIGHT NOW.

5. I have spent many hours this weekend scrubbing the grout in my tile floors. I am ashamed to tell you how filthy my floors clearly were, because the amount of dirt I am scrubbing away is... well, I think the technical term is A FREAKING LOT. Holy crap. Mr. WG wants to take a picture of me on my hands and knees scrubbing because he finds it amusing.

6. If Aetna does not pay for my son's speech therapy, I am seriously going to go out of my mind.

That is all.

Why, Why WHY?

January 27, 2010



Aetna Appeals
PO Box 14462
Lexington, KY 40512

To Whom It May Concern:

This letter is in response to your letter dated January 21, 2010.

You stated that in reviewing our appeal, you decided to uphold your previous decision not to cover our son's speech therapy. We are now requesting a second level appeal.

In your letter, you quote from your What the Plan Covers and state, in part:

Speech therapy is covered for non-chronic conditions and acute illnesses and injuries and expected to restore the speech function or correct a speech impairment resulting from illness or injury; or for delays in speech function development as a result of a gross anatomical defect present at birth (emphasis added).

Our son has a high arched palate consistent with the diagnosis of Sotos syndrome. This gross congenital anatomical defect is the physical cause of his delayed speech function development, and based on that, you should cover our son's speech therapy.

It is impossible to write this letter and not address another issue. You state that you will not cover services for the treatment of delays in speech development. This is morally, fundamentally wrong. In fact, it is utterly reprehensible, and some states have said as much in their court rulings.

It is not easy to rear a child with special needs. It takes an enormous amount of time and patience. The time that we spend fighting with you for basic services could be much better spent helping our children.

If you think that parents of children with special needs will simply give up and do without the necessary services for our children, then you have grossly underestimated us. Should you deny this appeal, in fact, we will bring a civil action under Section 502(a) of ERISA.

As explained in our previous letter, we would like to reiterate that after graduating from state-covered services, we called Aetna and consulted with you to determine where our son could be receive speech therapy in network and what would be covered. We enrolled in that clinic and spent about a year there, during which time our claims were processed and paid normally.

For scheduling reasons, we switched to another in-network clinic, PTC, in August. Again, we verified with Aetna that this clinic was in-network and that our services would be covered. Imagine our surprise when we were told that you had denied the vast majority of our son's speech claims since August.

Despite a complete evaluation and submission of the proper materials, you have continued to deny these claims, after you told us that this clinic was in-network and that our services would be covered. This is unacceptable.

Because we consulted with Aetna prior to commencing in-network speech therapy, which you told us would be covered, and in fact, you did cover and pay for this therapy for over a year, you should pay all past claims. If you choose not to cover going forward -- although we do not agree with this decision, and will fight it using all resources available to us by law -- that is a separate issue. You cannot, however, arbitrarily to decide to leave us responsible for a medical bill of over $1500 that you had previously approved.

We expect these services to be covered and the outstanding bill to be settled by Aetna immediately.

Sincerely,

WG and Mr. WG

Epistle: To D., on the Occasion of His Sixth Birthday.

Oh my freaking gosh, D., you are six. SIX. You have been on this planet, been in our lives for SIX YEARS. Part of me thinks this is absolutely impossible, because I, of course, am a mere 19 years old and it is 1994. And another part of me thinks this is impossible because you were just a little baby, and we weren't sure you would ever walk, and we didn't know if you would talk, and we didn't know -- well. You get the picture. And part of me feels like you've always been here, always been a part of my life.

I can hardly remember who I was before you. I can hardly remember a time when I didn't know what an occupational therapist did. When I was unfamiliar with the acronyms that populate the special needs world. When I was perhaps more innocent but -- and I have to be careful here, because I'm trying to convey a lot in words that seem insufficient to the task.

What I mean to say is, life was easier before you, for sure, but I'm not sure it was as worthwhile. And I don't mean that in a Chicken Soup-y kind of way, like all kids with special needs and their families are one big, happy, group of people who are SO HAPPY TO HAVE THE OPPORTUNITY and blah blah. Not that. What I mean is, you made me more cognizant of my own capacity for love and patience. You taught me about advocacy and strength. You teach me daily what hard work really is. And you give me a pretty decent excuse to speak my mind to random strangers at Target.

If I didn't have you, I would probably take a lot more for granted. So many people, after all, have healthy, whole children and never stop to marvel at the sheer wonder of it. I certainly didn't, back when I was a mother to two little girls.

It's only in retrospect that we appreciate our good fortune, I suppose.

There are days, my love, when I catch you with that glazed look in your eye, or when you're flapping your arms and grunting, or when your mouth is hanging open, and I would be lying, flat out lying, if I said that it didn't make me absolutely BATSH*T CRAZY to see you like that. It doesn't mean I don't love you, because obviously, I do. I think that's probably the hardest part. Like all mommies, I love you so much, and I want only the best for you, and I just have a hard time reconciling "the best" with... flapping.

There are days, my love, when I see you with the critical eye of a stranger, even if it's only for a moment, when I see the external, when I hyperfocus on what is there and present and obvious. And then you turn and smile, and that smile, that smile, it opens up my heart and the very heavens sing. It touches everyone around you, that smile. The one I see when I come to pick you up from school, and you tear yourself away from your friends and race over to me, hug me so hard I stagger backwards, and shout, "It's my MOMMY!" The pride in your voice, on your face as you tell everyone in the school, "Look who's here!" You astound me.

You force me to confront the worst parts of myself, it's true, but you also force me to be better. To do more. To advocate. To educate. To teach tolerance -- but not to tolerate ignorance.

I love you, more than I can possibly say. More than I can ever express. I love you.

Love,
Mommy

Can you help?

The note from D's teacher:

Mrs. WG,

D. is a wonderful child, but he is not always interested in our group activities in the classroom. He always feels tired or bored I guess. However, he works very well when I give him my undivided attention and work with him one-on-one which I can't do all the time. Is he getting enough rest and sleep at home?

By the way, he loves to work on the Leap Frog station, which is a good educational tool, and I'm using it as a reward for him when he finishes his work.

Do you have any suggestions? I appreciate your cooperation.

Thank you.

OK, peeps. He's not tired or bored. I mean, maybe he is, but that's not the problem. The problem is that when he doesn't understand what's going on, he tunes out completely. So, um, what do we do about that? I want him to be able to function as part of the group. How do we get there? Any brilliant ideas? Please?

Thank you.

The IEP

I am far too lazy to attempt to connect to my computer back in the states and retrieve what I wrote there, so I'll try to redo it all here. I'm sure I'll mess it up somewhat, but I'm the only one who will know the difference, so, whatever.

I arrived at the meeting a few minutes early and sat and waited while everyone else ran around. Eventually, we sat down. Listed as present were: Teacher, Special Ed Coordinator (SEC), Speech Therapist (ST), Principal, and WG. Principal was not actually present, and I have no idea why they listed her as present. I don't know if I really care, though. I probably should care, but I just don't.

Anyway. We started. Teacher said that based on my suggestions earlier in the year, she had changed her entire approach to discipline and teaching, and she never has any behavioral issues with D. ST and SEC agreed. We spoke about the progress D. has made in certain areas, and everything seemed accurate to me.

We began setting the goals for next year, and SEC kept mentioning that D. would be held to the Kindergarten standards next year. "Yeah, about that," I said. "How can we hold him back a year next year? Based on what I see, if we could just get an extra year in kindergarten, D. would really benefit."

"Impossible. Federal law. He'll age out of the PPCD program."

Got that, everyone? Federal law. Can't argue with that, right? Well, beat me with a stick and call me stubborn, because I'm not taking that for an answer. I continued to press, asking who I'd need to speak to to have an exception granted. According to the SEC, not even Teej's good friend Obama could help me here. Next year, kindergarten, the year after, First Grade.

OK, well, what if D's not ready for first grade? Then what do we do? "Oh," says SEC, "based on D's abilities, we'd probably put him in Life Skills."

Dead silence in the room.

Then, "Excuse me? I'm absolutely unwilling to let you WRITE OFF MY SON IN THE FIRST GRADE."

"Oh!" says SEC. "We're not doing that! It's the written IEPs that determine his education, not his placement. Even in the Life Skills class, we can demand specific educational goals."

Now, Internet, how dumb do I look? No, really? There is NO WAY IN HELL my kid is going into LIFE SKILLS in the FIRST GRADE. And even if the only comeback I can muster is, "Well F-you, clown!" it's not happening. It's just not.

So, now I have a year to figure out how to have my kid held back a year in kindergarten. And I fully expect all of y'all to help.

The rest of the meeting was kind of a blur after that, because I spent much of it alternately seething and trying not to cry. At one point, SEC left the room, and Teacher and ST both hurried to say that they agreed with me, Life Skills is Not An Option.

When I came home and told Mr. WG, he was also in agreement. "No way. You'll homeschool him if they try that." Yes. Yes, I will. And I will KICK SOMEONE'S ASS.

Seriously, why does everyone have to learn the hard way? DON'T MESS WITH MY KID.

It's About Damn Time

I have been a slacker lately, and it's not for any lack of desire to post -- I've been swamped with work (Yay!) and sick kids (Boo!) and a crazy schedule. And it's going to get worse before it gets better, at least if you're someone who counts on your bloggers to update regularly. I'm leaving on Sunday for a week in the Caribbean, with no access to the Internet. Or the phone. Sorry.

Anyway, some updates:

1. My unborn baby has a normal karyotype. This is good. We are now just waiting for the Sotos test results.

2. My daughter S. is going through some Serious Issues. This ranges from lying about homework to getting a 20 (twenty) on a math test to telling her music teacher she can't participate in a dance because her arms are sore. We are conferencing about her in about an hour. Clearly she has not received the memo that WG can only handle ONE CHILD WITH ISSUES AT A TIME, THANK YOU.

3. D. is so freaking awesome it makes my heart hurt. A few days ago, he said something in the car about Corduroy. I noted it, but didn't do anything with it, until his teacher mentioned that they read it in class. Whereupon I leapt into action and got a copy from the library. When D. saw it, he lit up. We read it -- not really, but we held it and turned the pages and talked about the major story events. And then, yesterday, in the car on the way to speech/OT, I asked him, "What happened to Corduroy?" And my kid said, "He lost his button. She wants to take him home. We have to fix it." He is so, so, so, so amazing. Love him.

4. Did I mention that I'm going on a cruise in the Caribbean next week? Oh, I did? Oh, OK.

5. I'm leaving on Sunday. For a cruise. In the Caribbean.

:-)

Stupid Universe

D's speech therapist just told me that her husband got a new job. In a new state. And she's leaving in two weeks.

What else ya got, universe? BRING IT ON.

HOLY CRAP, INTERNET! SHE LIVES!

You probably thought I died. Or, heck, maybe you didn’t even notice I was gone. Well, I’m back. And I’ve got a lot to say, so settle in.

My absence? Blame it on that lovely time of year known as Passover, also known as the Season of Our OCD-ness Manifesting Itself as an Unnatural Need to Clean Every Surface in the House, Even the Ones in Rooms We Do Not Use, Like the Upstairs Closet and the Shelves in the Back of the Garage. Or you can just say Pesach. Whatevs.

Anyway, in order to make it easier, the children do not attend school several days prior to the start of the holiday. Wait, that doesn't actually make it easier. Huh.

But today, oh blessed day of days, they are back in school, which means that they are not here and demanding to be fed and entertained MULITPLE TIMES A DAY. Woohoo! So.

1. The School called to inform us that they will not offer D. a place for next year. The consensus on their part was that he was not socially or languageally able to handle the requirements for the class he would be in next year.

2. As a result of Number 1, Mr. WG announced that we would not be returning to The School for therapy, and plus he doesn't believe in all that developmental therapy Mrs. Block does anyway, because it's out of network, so it can't be REAL, right?

3. Remember how I said that Mr. WG is losing it? He seriously is. Like, seriously. I guess it had to happen at some point, because how long can a person live with me and stay sane, right? It's kind of funny to watch him, but I'm also hoping he hurries up and works through his crap so that I can go back to being the one with the Issues.

4. We have a new speech therapist who is OK. Competent, certainly, and she has potential. So we'll see how that goes.

5. We officially accepted D's placement in the PPCD for next year. And I verified that the bus that will pick him up and drop him off daily is, indeed, yellow, as any other color would have most certainly been a dealbreaker.

6. The title in that last post three years ago? That’s a Hannah Montana song, peeps. It’s called Just Like You, and it’s about how Hannah is really, totally just like you, provided that you are also worth about a billion dollars and slated to head up your own empire.

7. Huh. I guess I didn’t have as much to say as I thought I did. But I promise to say it more regularly now that The Endless Days of Cleaning are behind us.

Another Open Letter to Aetna Health Insurance

Dear Aetna:

Well, that’s not right. I can’t very well call you “dear,” now can I? Not when I find you utterly reprehensible.

So, let’s try again.

Aetna:

Let me start by saying that I will try to be professional, but that this is an emotional subject for me, so please bear with me if my emotion shows. I’m trying, which is more than I can say for you, Aetna.

You may recall that we’ve spoken in the past about my son. If you don’t recall, I’d like you to think really hard, because all that time you were giving me a hard time about paying for his various therapies, he was COVERED UNDER YOUR HEALTH PLAN.

Which is why my husband and I were amused – and then quickly irritated – by the letter you sent us telling us you could no longer cover his “pre-existing condition.” Aetna, Aetna, Aetna. There are some very specific reasons my husband doesn’t go into business for himself, and one of those reasons is health insurance. We are well aware of the laws governing group health care plans. Nice try, but you totally lose here. And you suck.

My husband called you to tell you this. Not that you suck – he is much nicer than I am. No, he called to point out that YOU COVERED OUR SON for the last 18 months, and that you STILL cover him, so pay up. And you said that there “must have been a mistake” and to just “ignore the letters.”

Aetna, I would LOVE nothing more than to ignore your letters, but you keep sending them, and you keep telling me that you haven’t yet addressed the claim submitted because the member is under review.

Let me make this clear, Aetna, in case I haven’t been already: DO. NOT. FUCK. WITH. MY. SON.

I want to stress that I rarely use such language, and I have NEVER used it on my blog before, but you earned it.

Aetna, do you think we are stupid? You must. But we are not, and we are well aware that this tactic, just like your automatic kickback of EVERY CLAIM WE SUBMIT ON BEHALF OF OUR SON, is simply a way to delay paying us what you owe us. And I hate you for it, and I curse you for it, and I really, really hope that one day you are the recipient of the quality of service you provide.

-WG

The Good, the Bad, the Worse, the Humiliating

The Good:

D’s evaluation on Friday went reasonably well. He did not run out screaming or pitch a fit, and we were officially invited for a visit to The School, to be scheduled for sometime after their spring break, which is next week.

The Bad:

The woman who did our eval spent a lot of time asking me about my other options, and I don’t think she appreciated my answer (vodka and a sharp knife), which makes me feel less optimistic than I want to be.

The Worse:

I totaled up our debts over the weekend. We owe $27,000 to various credit card companies. This comes ENTIRELY from paying for therapy via 0% balance transfer offers and then rolling them from one card to the next. I can actually match it up, bill for bill. And remember when my parents said they were going to help? Yeah, that’s the last time I heard about it, too. They did mention the other day that they finally bit the bullet and called their broker to sell some bonds to pay their tax bill, but they didn’t mention anything about cutting us a check. Maybe they changed their minds. I don’t know. I guess, if it comes, it comes, and if it doesn’t, I’ll rent Baby J. out for parties or something.

The Humiliating:

I went back to the business manager at the school my children currently attend. “Do you have a minute?” I asked him. “Oh, sure,” he said, and turned around to face me instead of his computer.

“So you said I could come and see you if I needed more aid for this year,” I said, whereupon he got up and closed his office door, bless his heart. Then I kept it together reasonably well as I laid out the numbers for him. And he came through for me, and he was really nice about it, which kind of makes me feel worse. Like, if he were mean, I could go home and feel all justified about lowering my payment. But he was so understanding that I just feel like I have failed to properly support my family.

So as not to depress you all entirely, I will end on a relatively good note: I contacted the Small Business Administration today. They offer free counseling/coaching services to small business owners. Maybe they can help me take my business (or at least my income) to the next level.

The Wonder in Small Things

Yesterday, D. had a truly amazing therapy session. It was kind of like watching a regular kid play. At one point I asked Mrs. Block, "This is really happening, right?" She assured me that it was. The pretend play was incredible, he was engaged and on task for the entire 45 minutes, and his conversation was amazing. Mrs. Block was also appropriately impressed by the ice cream story that I told her.

It's appropriate that after a session like that I find myself nodding along emphatically when I read: "Often times we do this with special needs children--we let them get away with inappropriate behaviors because we assume they 'can't help it.'"

So often, I find that if we simply stop cutting D. slack, he eventually sighs and says, "FINE. I'll act like a typical kid." It is really amazing to watch it happen.

Late yesterday, I got a call from The School. D. has an evaluation scheduled for this Friday morning, the first step in our second attempt at enrollment. Let's hope it goes a little better than the last time.

A Little Look Inside My Head

On Thursday, I drove D. to therapy and sat in the waiting room, sorting through my box of paperwork, adding things to my to-do list. In the chair next to mine was a woman I’ve seen there many times.

“Is your son with SuperSpeechTherapist right now?” she asked, and when I said that he was she asked when his session ended.

“At 1:30 she hands him off to Mrs. Block,” I said.

“Oh, great. I really need to grab her for a few minutes. I want to see if she can take over speech for us. I’m freaking out. I just found out that my daughter’s speech therapist is moving away the same week the OT is going out on maternity leave.”

“Yikes.”

“I know, right?”

“But don’t forget that she’s also going on maternity leave for the summer.”

“No, that’s fine. I’m just going to be without therapy in two weeks. Not a good place to be.”

“Definitely not.”

“Well, SST is terrific. She’s been really great with D.”

“Yeah, from what I’ve seen she’s amazing. I just can’t deal with all this transition. And it’s right before our visiting day here.”

“Oh. Well, we failed our visit last year.”

“So did we!”

“And I swear, I’m going to hang myself if we fail again this year. I’ve looked, and there’s nowhere else to send my kid. I just don’t know what I’ll do.”

“I know, right? I’m just barely keeping it together these days, and that would just push me right over the edge.”

“Totally. Yeah, Someone told me recently that ‘God only gives you what you can handle’ and—“

“That’s bullshit!”

“That’s exactly what I said! I mean, LOOK at me! NOT HANDLING.”

“You know what it is?” she said thoughtfully. “What choice do we have? I mean, we can’t just abandon them, so we HAVE to get up in the morning and put on a brave face in public, but at home? COME ON.”

“I KNOW. I’m a freaking MESS at home.”

“Yeah, I read something once about grief, about how the better people LOOK like they’re doing, the worse off they actually are.”

“I can believe that,” I said.

And the more I think about it, the more true I realize it is. Look, if I left the house with unbrushed hair, mismatched shoes, and dirty clothes, people would stare, and they would KNOW that I am not handling it well. I don’t know how they would react, but I’m pretty sure that’s the part where you find out who your friends are.

The ones who are there for the long haul show up at your house with food, spend six hours cleaning the cereal off the side of your kitchen island and another two hours just letting you cry. The ones who really love you take your special needs kid for the day and tell you, “We’ll be fine. Just take a nap.”

And probably the reason I keep it together in public is that I suspect that most of my friends, while they like me a lot, might not love me that much. They’re probably the kind who would look a little embarrassed to see me such a mess. “Is everything OK?” they’d ask, but they’d ask it with car keys in hand and an over-the-shoulder glance meant to imply business, meant to inspire me to laugh it off as a bad morning.

Don’t get me wrong. I don’t think my friends are bad people. I think they are human, and I think in a sense we all see what we want to see. I think that if I were actually dying and in the hospital, they would all be there for me and my family. But that’s because dying is a short-term thing. This, my life, is long-term. And really, who wants to take on that burden? Who wants to be the person who says, “Listen, the third Tuesday of the month is mine. I’ll take D. that day. Every month, for as long as you need it, so that every month you know that you’ve got that day.”

And no one wants to ask me the really hard questions because the answers are really hard to hear. What are my long-term plans for D? Who knows? Yes, right now we have a college fund (although the 529 people did not appreciate that our last contribution consisted of several partially eaten lollipops, a piece of gum, and thirty-seven cents in pennies), but it may one day be more of his long-term care fund. No one really wants to think about the fact that D. may always be different, always need help.

No one really wants to hear YET AGAIN that every financial decision we make comes down to, “Do we do this, or do we pay for X hours of therapy?” No one wants to know that giving up my housekeeper to pay for speech was one of the hardest things I’ve ever done and that there isn’t ONE DAY that I don’t resent that I’m doing my own laundry and washing the damn floors AGAIN.

The camp forms came out the other day, and we figured out that if we send the boys until 2 and the girls until 4, it’ll cost us $6,000. But then, one of my friends asked me last night, “Will you need to have a shadow for D.?” And it was like a truck hit me, because I had completely forgotten that NOTHING is easy, and that the real cost would wind up being more like $8000, and camp just became a luxury we can’t afford.

So I get dressed in my funny t-shirts and my denim skirts with funky embroidery and my tall boots, and I laugh when people ask if we’re going away for winter break or summer vacation and I tell them, “It’s all good,” when they ask how I am. And I hide in the closet in my office so my husband won’t hear me crying and I make jokes about the chaos when people call or stop by, and I let everyone think that I am handling things.

Maybe I underestimate my friends. But I don’t really think I’m brave enough to find out.

Evaluations and Applications

Last week, I took D. for his second attempt at the public school evaluation. He had gone a week earlier with Mr. WG, and they returned after a scant 10 minutes because D. didn't want to do anything. Last week he was better, but we didn't get through everything we needed to. So when we were setting up the next appointment, I said it might be wise to try for the morning, rather than the afternoon. "How early do you start?" I asked.

"Seven."

"OK, we'll be here at seven," I said.

What can I say? It seemed like a good idea at the time. So today, Mr. WG got up at 5 am and was showered and dressed and WAY TOO AWAKE at 5:30. I staggered out of bed at around ten of 6, and by the time I made it into the kitchen, the girls were already playing on the computer, having eaten and dressed and all that. Baby J. was watching TV, and D, who normally wakes up at Waythehecktooearly o'clock, was still sleeping. But we made it to the appointment on time, and D. was actually pretty cooperative. And for most of the time, I didn't want to kill the public school people.

We still have to go back once more (also at 7 am) to finish up the eval, but the end is in sight.

In other news, I have nearly completed the new application for The School. And since I have called every other possible place here, The School had better admit D. this time. Or I'll... well, I'll be really sad.

In addition to the school application, I am working on financial aid applications for funding from several sources. I have to submit my current tax returns, so this morning I worked on finishing up the tax stuff to send off to the accountant. I really hate paperwork, so this is a real accomplishment.

My tax prep work involves many hours of Quicken, data entry, reviewing crap, hounding clients for 1099s, etc. Mr. WG has one job: log in to his Fedex account and arrange a pickup. So, guess who did her work and guess who is whining like a baby?

Explanations.

Ella said she hoped I didn't really think D. is broken. Ella, I borrowed that language from Rob, who has spoken so eloquently, so many times about the language we use, the language he uses to describe his daughter. I particularly like this recent entry, an excerpt from his forthcoming book:

You know, one thing I have taken some heat for in the past, and will again in the future with this book, I'm sure, is the fact that I don't really have much use for "gentle" or "correct" language where disability is concerned. And I know that's very important to some people. You know, terms like "special" or "challenged" or "differently abled" instead of disabled. And I understand why that's important. It's never been a good fit for us. I refer to Schuyler as "broken" and her disability we refer to as her "monster". So I guess it's different for us.

I guess the thing that I don't understand completely is, how that type of gentle language helps the person with the disability. I suspect that it is more for the rest of us, the rest of society. It helps us integrate them and deal with it, deal with something that's hard.

And I don't know that it should be easy, actually. I don't know that it should be something that gets to be sugarcoated, because it is difficult, and the things that these people go through every day, it's not something that we should easily deal with. It should be something that we're always aware of how hard that is.

We have adopted some of that language. For example, we told our daughters that D's brain is broken. And it is. D. will never be neurotypical. His brain will always and forever be different from your and mine. He may learn to emulate neurotypical, to compensate for his structural differences, to pretend to be just like us, but the truth is that his brain is not typical.

On the good days, I think of D. as delayed. On the really good days, I think of him as mildly delayed, almost caught up, doing really well. On the bad days – and two days ago was a doozy for sure, what with the feces on the walls (I don’t think I even told you about that part of the story, Internet, but trust me that it was just as awful as it sounds) and the beatings administered to himself and to me – it sure feels like he is broken.

I’m sure there are people who find this offensive. If you have a child with special needs and would never consider that child broken, then I am sorry if I hurt you. Let me tell you that I don’t think your child is broken. I just sometimes feel like mine is. And if you don’t have a child with special needs, you can love me a lot and empathize, but you will never know the tears in my heart. You will never know what I feel on the bad days.

With that out of the way, let me tell you how much I love D’s psychotherapist, Mrs. Block. I left her a fairly desperate message on Tuesday evening: “I think we need to add an extra weekly therapy session. I’d like to talk to you about why I think that and hear what you think.”

Now, you’d think that a woman who gets paid for each therapy session would be ALL OVER adding a weekly session. But Mrs. Block is FREAKING AMAZING, and she told me that an extra hour with her wasn’t the answer. Instead, she gave me very detailed and specific instructions for handling everything, told me to think about it, told me how to approach it with Mr. WG, told me to come to her with more questions after I had time to think, and gave me hope. And yesterday, I tried what she said. In a nutshell, she helped me see that the whole poop on the wall thing – that’s a control issue. That’s D’s response to losing control in other areas, and perhaps in particular a big response to the fact that on Tuesday I took him to have an assessment for services in the public school, and he did not want to be there, and I forced him to stick it out. So his response was basically a big ol’ “F-you, Mom” expressed in the only way he knew how.

Solving that problem for right now means simply not giving D. the opportunity to be alone with his shit, and providing the language that describes his emotions. “That was really hard. Mommy made you stay with that lady and do hard work and you did NOT like it. And you did it and it was not fun.”

As for the hitting, Mrs. Block said that this is not an approach she normally advocates, but we’re on the cusp of something that has the potential to swing wildly in either direction: right now D. is a 4-year-old kid who is the size of an 8-year-old kid. He’s experimenting with anger, and so far it’s been working for him, because it forces us to engage. If we let this continue, we’re going to find ourselves with an aggressive, angry 10-year-old who is the size of an 18-year-old. If he’s labeled as the mean kid or the bad kid or the angry kid, no one will be motivated to help him. So to nip this in the bud, Mrs. Block said, disengage. Completely. When he starts hitting himself, make sure everyone – D, the other kids, and Mr. WG and I – is safe, and just walk away.

This is so incredibly hard, but so important. And she was careful to warn me that it will get worse before it gets better. But I tried it yesterday, and the episodes did pass much more quickly when I withdrew my reaction and my presence.

We are in for some hard times here. But I have to believe that we can make it through to the other side.

Skool Sux

We saw a school yesterday. I will not send D. there.

The school we visited happens to be basically next door to The School, so at least we knew how to get there and how long it would take. I knew almost nothing about this school, and I had no preconceived notions.

We entered the building and signed in, and the director led us to her office. We chatted about D., answered some basic questions, and she talked about the school. The general population served is children with ASD. We explained that D. has many ASD-like behaviors, but that he is exceptionally socially motivated, which is good, because he really tries hard to please people. The director suggested we go look around at some of the classrooms.

The building itself is small. The rooms felt cramped to me, but I am not a preschool child. As we went through the school, the director opened every classroom door and had us walk into each classroom. We cut through several classrooms to get to other parts of the building.

One of the pre-k (or possibly kindergarten) classes was in the art room. Two of the boys, excited to see the director greeted her by name and one said, "Look how I'm coloring fast." He scribbled his crayon across the paper. His friend said, "Yeah, I'm coloring fast, too!" and did the same.

I can think of many possible responses. None of them are, "Oh I don't even want to see that!"

I guess I felt this school is disrespectful of the children they serve. Barging into classrooms, disrupting routines, and not allowing a child the freedom to scribble... none of it sat well with me. So we're not going there.

Which means I've narrowed the field down to eleventy billion minus one.