Great migrations

No, no, not the National Geographic kind.

The kind we families with services experience about twice a year, when our special kids finally start making a bond with their TSS or MT or other wraparound therapist and then that therapist moves on to brighter pastures elsewhere, at another agency that you’re not approved for.

I don’t blame them, of course. The therapists get opportunities for better jobs, better benefits, better wages in a field that doesn’t pay much to begin with, so you and I would be right on that bandwagon too.

All the same, when our kids have a condition that everyone agrees requires the greatest amount of structure and routine that we can arrange, don’t we worry that the constant turnover in (particularly) TSS workers isn’t in their best interests?

I wish that agencies could have their people sign some sort of clause that makes them agree they’ll stay around for at least some sane period, six months, a year, in order to get the job. (Wait, Miss Lawyer, wouldn’t that be involuntary servitude? I think if you’ll check all those law books on your shelf there, you might find it’s illegal…  oh yeah.) But seriously, if an agency is going to put in time and energy to train someone, shouldn’t they have to stick around for some period of time?

Sadly, most agencies, at least in our area, are desperate for TSS workers to keep up with the community demand, so they’re not in a position to bargain much, I suppose. Having bodies to send out to work with the clients is important.

But encouraging children who already have trust issues to trust workers and bond with them, only to have to change a few months later? This reminds me of the situation I have with many of my family law parents, who parade a host of new boyfriends/girlfriends before the children, letting the children bond with the new friends, then kicking them out. The experts say these children will learn not to get close to others, even future partners, wrapped up in protecting themselves from the remembered hurt of potential loss.

It’s just sad to see it happen, during the seasons of the great migrations.


Thanks to photographer Royce Bair for use of this photo.

It’s a small world

Back when I had my first round of children, I had great dreams for them. I just knew they’d be concert pianists or famous actresses or….who knew what?

The days and weeks and months and years passed and they did many wonderful things–got awards, graduated from college, produced healthy children. These accomplishments were duly noted and applauded. They may not as been as significant, on the scale of other children I knew, who were being accepted to Princeton, or competing in national music events or starring in every community theatre production, but I didn’t push them, either, the way some parents do, to the brink of breakdown. It was all right.  They were happy and healthy and content.

What we look for now (and I notice it often in other blogs of parents of autistic children) are small things. Actions that demonstrate mastery, or maturity. It IS all about the small things.  Like:

*This week when I made a grocery run, we left the groceries on the table when I got home because there were several other imminent tasks, like getting the laundry off the line and sending the boys to the shower. When we came back Little Miss had put all the groceries away. No one had asked her. She just knew that’s what had to be done, and did it.

*Little Miss left her spelling words at school, and though she teared up as usual when she’s frustrated, she suggested instead that she could spell out ten country’s names. And she did. (Initiating a solution to a problem!!)

She really has done better on the ADD medication, and the advances she makes seem to stick longer and lead to more conversation/understanding/accomplishment, even after we’ve discontinued her wraparound therapy.

These are small things.  But we’re just as grateful as if she was a first row violinist at Carnegie Hall. Brava, my little one (who at 9, is nearly tall as me!)!  Brava!

Help! I need somebody!

Sounds simple enough: everyone has come to the conclusion Little Miss would be better off with a mild dose of ADD meds. So let’s get some.

Not so easy, as it turns out.

Parents in Pennsylvania can apply for a state medical card for their children with autism, no matter what their income, thanks to a special “loophole” provision that simply acknowledges that some conditions just require a lot of money thrown at them. This card is a lifesaver–it covers wraparound services, which are normally not covered by private insurance. (Although the state did pass a provision for autism to be covered by insurance here.)

Neither the Cabana Boy or I have insurance at the moment through employment, so we depend on this card to cover both children who are diagnosed with autism issues.Not all doctors take the state’s card, of course, because the state pays less than traditional insurance companies. We’ve just paid out of pocket for those doctors, like the pediatric neurologist who has seen them for the past five years, because there are no other autism specialists for 100 miles.

This doctor has seen Ditto Boy for several years to prescribe his ADD meds (since the pediatricians won’t do that any more either). Seemed simple enough to set up an appointment for Little Miss and get her checked out for meds as well.

Didn’t it?

The doctor’s office called to reschedule twice and then the day before the appointment, called to cancel. She gets the state medical card, they said. We can’t see her. “But you saw her for three years; we paid you money,” I remind them. We’re not allowed to do that. We could lose our license, she says and she hangs up. Before I can say, “well then I want my $1700 back!”

A little angry by then, as we want to get started on this right away (and now we wasted two weeks waiting for them), I set in to start calling around for alternatives. The managed-care office gives me half a dozen phone numbers, most of which go to satellite offices of doctors in Pittsburgh who are in my county one day a month and think maybe I could see them some time by February. Or March. (Say what?)

I finally find someone who will see her within this month, but it’s only the intake worker.  The doctor can’t be seen till some time in December. Maybe. Or January. It was the best deal I got out of two hours of telephoning. I took it. At least December is before the year’s half done.

It’s a sad situation. Many children need services and there are very few child psychiatrists who can provide them. A complicating factor that I’ve found in working with families, of course, is that there are some parents who just can’t discipline their children or teachers who can’t control their classrooms, and they all rush to get the children medicated. And, of course, there are parents with mental health issues or other limitations or others who just can’t figure out how the system works, who probably can’t make as many connections as I have in order to get the services in the first place.  Bottom line is, kids on state cards get the back of the line, most of the time.

I’m grateful to have the card, don’t get me wrong. We’ve been fortunate to have many hours of services at no cost, and they have done our little ones a world of good–probably saved the state the necessity for caring for them lifelong. But when it’s so hard to get services, is it any surprise when parents who have reached the end of their rope take advantage of an opportunity to get help like they have in Nebraska?

In that Time article, the Rev. Steven Boes of Boystown says one root of the abandonment problem is that there is simply not enough help for parents in crisis. In Nebraska, for instance, there are only six child psychiatrists in the entire state, he says. “It’s a national problem … insurance often won’t pay after six visits — so if the kid’s not ‘fixed,’ you’re out of luck. States have a jumble of services. It’s a puzzle with missing pieces.” ‘

As a provider of services myself, I know you can’t treat everyone like an emergency. And, in all truth, this isn’t an emergency–I’m just anxious to have my children be the best they can be. But when some of my parents complain, “There oughta be a law…” I guess I can’t argue with them.

Helping the Helper

One of my peeves has always been that many of my clients think when they have wraparound services, they are now in mommie heaven. The problem children are taken off their hands, and they can just search their homes for bonbons, if the little critters haven’t stolen them already.

The peeve carries over to the workers. No question they have a hard job– going into strangers’ homes, many of them less clean than you’d like, maybe lice-infested, to deal with kids who may not have been raised under the best of circumstances. Often they just “babysit,” give the kids a break from a bad home, take them for ice cream or to the library or other things the parents just don’t do. Works for the parents, and apparently it works for them. I bet the kid feels better, too, when someone’s paying one on one attention to them and buying them nice things.

But that’s just not the situation here. We keep our house pretty clean, we have what we need and we actually pay attention to our children, especially the ones with issues. (Probably we govern them with too tight a grip–but that’s a subject for another post.)

The Captain’s mobile therapist has come several times now, and most of them have been afternoons I’ve baked granola–she’s so amazed we have real food. Home-made, even. Little Miss’s TSS and BSC have come several times, and all they keep saying is, “Wow, she does so well! Our other kids aren’t anything like this!” The TSS was surprised we’d done homework with the child before she came; apparently in her other families, that’s left for the “babysitter.”

So we’re working through the new relationships. The TSS is supposed to focus on language development, pragmatic and receptive speech–so she brought a word search page where you had to search for six-digit numbers. I asked her what the purpose was for that, genuinely curious, and she said it wasn’t therapeutic, but something she knew Little Miss would like. Except of course, she didn’t do it fast, being very meticulous, and then the TSS wouldn’t let her finish it–a major issue with her. She has to work things beginning to end before she’s ready to let go. It’s all over her file. So there was some grief about that.

I tried to stay out of the room at first, because I wanted them to get to know each other and build a rapport without me. But I drift in eventually, and they’re going over some category association cards, and some question and answer cards that headed in the right direction. So it was all okay until Little Miss asked if she could play with play dough (also home-made).

The TSS agreed she could, and she got it out, with her Bob the Builder set that has molds inside little houses and so on.  We were all three playing, and talking–Little Miss was telling the story and answering questions, doing very well–and when Little Miss gathered it all up into a ball about eight inches in diameter, I said, “What would happen if that came rolling down the street and crashed into the house?”

She laughed and played that out, knocking the house sideways. Then she set it up again, and held the ball overhead. “Or like this!” she said, and dropped it on the house from above. That inspired smiles and giggles all around. I asked her, “What would the people do in that house?  What would they say?”

She considered a moment and nodded thoughtfully. “God damn it!” she said blithely, and she pulled the dough off the doomed house.  “Then they would call 911.”

Meanwhile, the TSS and I are laughing so hard we couldn’t reply. Little Miss went on telling what would happen when firefighters arrived and so on. And somehow I had the feeling the TSS thought perhaps Little Miss’ s language development was coming along just fine.

Customer service? Maybe

There aren’t too many occurrences that leave me speechless. Between a family law practice, seven kids and three husbands, I think I’ve about seen it all. However, tonight I received a response to a letter I wrote about a wraparound agency that was thoroughly incompetent, the first one our kids had. I wrote the letter in August 2004.

What? you ask. It took four years for them to respond to your complaints? Apparently.

Obviously we don’t use this agency any longer–didn’t, as of the time I wrote the blistering three-page diatribe about the people who were so hostile and arrogant with us that we were physically ill every time we had to deal with them. Captain Oblivious had a TSS worker who used to be a phys ed teacher, and her idea of therapy was to march him two miles a day from downtown to a park, even if he threw up at the end. When she wasn’t walking around doing her personal errands while “giving him therapy.”

Little Miss had just graduated from early intervention into TSS therapy, but her new college grad worker had already booked her summer full of personal plans, cancelled half the sessions, and really didn’t know anything about autism (though she insisted Little Miss was just the cutest thing.)

I’d nearly forgotten the medication fiasco until I looked up my letter on the computer while the guy was on the phone. Here’s what I wrote:

C.O. “was prescribed a second dose of his medicine to be taken during his TSS time. There was discussion with Creekside where they told dad they could not give him the medicine, but that the child could take it himself if we sent it. So we sent it in his lunchbox. The first day it came up missing out of his lunchbox; so we were told to send it in a pill bottle. The second day we sent it in a pill bottle but it was not the pill bottle with the prescription on it. So the TSS coordinator got in the bottle and got the medicine and was checking it against her PDR for some reason, at the same time protesting left and right that she wasn’t supposed to have anything to do with medicine even though she was a nurse. Our question was why did she have her hands on the medicine at all if she wasn’t supposed to deal with it? Why didn’t she just send it home and explain what she wanted, since she was unclear the first time? It made us wonder what really happened with the first pill.”

Like most confrontations with the agency, it was clear they wanted us to just shut up and accept what they gave because they were the experts. Many parents would, because they tend to use wrap services as free babysitting and respite from a difficult life. But, as I explained in my letter, we work hard and don’t get to spend as much time with the children as we’d like. We agreed to sacrifice our time with them so they could get 30 hours a week of help–but then we expected they would actually get help.

We have since changed agencies twice, and love the people we work with now. They value us as we value them and as a team, we are building up these kids into something great. I wonder what the real purpose was for this call from the supervisory agency. I discussed it with him and he assured me that many of those issues had been addressed, but he never asked me to come back. And I wouldn’t.

The whole incident reminded me of the Alex Barton story in a way, because it showed me once again that we as parents are the ones who are responsible for assuring our children’s education progresses as it should. We must observe and enquire and monitor to make sure we’re getting what they need, and not getting what they don’t. Our very special customers deserve service.

All in the name of progress

I managed this week to conduct not only the “transition to junior high” IEP for Captain Oblivious, but also the first negotiating session with the new managed health care people. Let me say, either meeting was seriously worth several glasses of wine and maybe a Valium.

The IEP meant meeting the responsible people at the junior high, and realizing with more of a pang than I expected, that these professionals who have seen the boy through five years will no longer be a part of his life. A new autism support teacher–fortunately a young lady I’ve known since she was a child– means everything will be different. Everyone is well aware of his issues now, and the repetitive nature of the listing of needed supports for success hammered home how difficult he can be.

We joked about how he thinks he knows everything, and I said he should hurry up and get to be 18 while he still was smarter than everyone else, so he could get his own place and be right ALL the time. The school psychologist, who’s been a real support, wondered how I could be sure C.O. would be out on his own when he was 18.

“Because his father said so,” I assured her, and there was a big laugh.

But at the same time there was a little poignant pause when I really wondered.

The day before, I’d spent several hours with the new managed care team for mental health, where they analyzed the results of the two-hour evaluation the children had a month ago with a local psychologist’s intern. I didn’t get to see the report, “because of HIPPA,” they said, but I was aware the recommendation had been exactly along the lines of my request, 30 hours of mobile therapy and TSS a week all summer for Little Miss and C.O. for an inclusion summer camp to work on social skills. The director of the wraparound agency we used before was there, and she backed me up 100 percent as they went over the recommendations they had advised me we needed to have.

The county person kept popping up with useful statements like, “Oh, have you heard of Autism Speaks? They have an awesome website.” Yeah, no kidding. I’ve been at this seven years, pal. What’s your excuse? The rep from managed care seemed to understand everything we wanted as we went through the children’s strengths (relatively few) and areas of concern (how much time do you have?) and came up with a beautiful recommendation. We all left smiling but weary.

Then Michelle from my agency says, “Oh, by the way, you may not get it.”

“What? No! Everyone was happy. They wrote it all down!”

“They always do. Then they take it back and decide whether they’ll approve it or not. If it goes to Peer Review, even less chance.”

So I headed back to my car with a sigh, wondering if that whole six or more hours had been a total waste. And now, after a week of reviewing just how bad the situation is so we can get help, I’m looking for my rosy-colored glasses so I can get a positive outlook again. Bottom line is, every problem we overcome means we’re moving forward. And besides, C.O. came home from track and field day with his first blue ribbon ever today–and Little Miss got a blue, a 3rd and three 4ths. Just have to keep those blinders trained on the bright side.