Tag Archives: wrap-around

Discharge

IMG_2209Mikey has graduated from wrap-around services. Officially, they use the term “discharge.” It didn’t feel like a discharge, though. We had a party! His last home visit with our BSC, Mikey was in charge of the whole plan. His ideas ranged from a trip to the bowling alley to “let’s sit on the couch and watch Lego movie.” Ultimately, we went to the grocery store and bought some fancy cookies and then played Guess Who.

Oh, and then we went out for hibachi.

At school, he barely noticed that S was gone, although he had started talking to her when she was there and deigning to suggest he was happy to see her. In front of other people, even!

Part of me was terrified of this day, that as soon as it happened we’d experience a dramatic setback and I’d be on my own. But now I know that even if something happens, I have a wonderful support system I can rely on.

Plus, any time in the next year, I can call up our agency for booster sessions with our BSC if necessary.

Truthfully, things have just been fine. Meeting with our wrap-around team is now one less thing we have to do each week. The void has been filled by Mikey having to read out loud for 15 minutes each day. And that? Well, the other day he said, “Did you know I can read inside my head? I just look at the words with my eyes.”

Next chapter, indeed.

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Red Zone

We’ve been having a really great month here. I mean, really great. I was seriously considering calling up the wrap-around agencies and saying, “Don’t bother with all the meetings and turnover paperwork! We don’t even need wrap-around! I’m not even sure Mikey has autism!” Sure, he’d have melt-downs every day, but generally only 2 or 3 and school was going so great. Ah!

And then this week happened.

It all started Monday with a fire drill. He ran around the school lot screeching and flapping and had just an awful afternoon. We started up with the new BSC and TSS, and he really put them through the wringer. I was sort of glad, because Mikey will often behave like some sort of exemplary human when we meet new clinicians. Not Monday! He even did multiple escape attempts to really solidify my safety awareness concerns.

The week disintegrated from there, with poor sleep at night leading to starting each day in the red zone–he wakes up screaming, screaming, screaming by 5:30 each morning. Then, he has rough days at school, has tough afternoons with us at home, won’t agree to eat dinner, and goes to bed “hangry” until it all repeats again. I’m not even sure what it will take to reset him.

How do you even recover from a day that begins in the red zone? Usually, we can see a melt-down approaching and if we’re sly, we can derail it, work hard to get Mikey in a calm, neutral place. Or at the very least we can get him not to hit his brother.

But when he snaps his eyes open in the stiff-bodied, shrieking, fight-or-flight state? We can’t figure out how to get back on track. Tonight, we’re going to try a 6:30 bedtime to see if that helps. Now, to survive the next 11 hours.

I’ll spend the entire day stiff with one hand on the phone, just waiting for a call. That or I’ll walk up to pickup so tense, with my heart in my throat, waiting to hear what happened in the class today.

Switching Agencies

We’re finally at the end of the grueling process of switching agencies. What sort of agency, asks the lay reader? The agency who provides our in-home therapeutic care for Mikey, also known as Wrap-Around services. The agency we’ve been with since our diagnosis has been unable, for 10 months, to provide a TSS for us even though we have a prescription.

Our case manager has been calling every agency in the county for 10 months, starting at A and working through to Z, and finally found us an agency with TSS staff. This was in July, on Mikey’s birthday to be precise. So, two months ago, we said yes to switching agencies. We’ve been waiting two fucking months for this transfer to go through.

How can something so simple take two months? I’m not sure, but I know it involved a great deal of waiting for one person to sign a form that then sat on the next person’s desk for a VERY LONG time. Once all the forms were in place, the person in charge of intake at the new agency had a 3-week back log. So.

We’ve been in a holding pattern for 2 months, knowing we’re switching to new therapists with new methods, and yet still working with our current person. It’s been awkward and stressful and frustrating.

Yesterday was the 2-hour meeting in which we discussed every element of Mikey’s life with the new agency and set up all the forms (permission forms, that sort of thing). A week from now, we will have another hour-long meeting where I sign all the forms. This hour-long meeting will come after a meeting with our case manager, who’s going on maternity leave, where I have to sign permission forms to give her temporary replacement permission to talk to us about Mikey and talk to all Mikey’s “people.”

Are you exhausted reading about this? It’s awful.

For me, the most frustrating part is that these two long meetings have to take place on Tuesdays. Tuesday is one of my work days–the only two days each week where (for 6 hours) I don’t have the children, where I’m supposed to be teaching and otherwise preparing for college writing courses. I have to give up over 2 hours of one of my teaching days two weeks in a row because this was the only day the staff person had available. The alternative would be to wait perhaps another MONTH to get Mikey going with this new agency.

I’m almost ready to just stop services altogether because I’ve been lulled into complacency by how wonderful he’s doing at school. But, I know that our family still needs support, and so I will take a deep breath and shift my whole damn week around so that I can sign these papers for a few hours next Tuesday.

I’d be lying if I pretended I’m handling this with any sort of maturity. The many layers of complication inherent in a bureaucratic system like this leave me feeling enraged and helpless.

Thankfully, my son *is* thriving with the support we’ve been getting. If I can just deal with “the system” a bit longer and keep getting some good help, I’m hopeful he’ll graduate from wrap-around services entirely. Then, he’ll just be an intense, weird kid. Like his mom!

Grievances

My current understand of the way things work, in PA and in Allegheny County, at least, is this:

1. A psychologist gives your child an autism spectrum diagnosis and makes a recommendation for certain services to help your family.
2. You take this recommendation to an agency who provides “wrap-around” services, meaning people come into your house and help you out in the way the psychologist suggested.
3. The folks who come to your house make some more notes and expand upon the psychologist’s recommendation and then send all of this information to…I don’t even know who these people are, but another level of agency who has to APPROVE the services in order for you to be allowed to have them.

Also? You have to repeat all of this every 6 months, so more evaluating and making plans and getting approvals and gah!

This June we had our 6-month evaluation with Mikey, who spent the whole meeting lying on the carpet licking the shoes of the evaluator. To be fair, they were very shiny and very high-heeled. I felt drawn to them, too. Unlike my first evaluation, this one brought no surprises or enormous emotional upheaval.

Results: yep. Still on the autism spectrum.

The psychologist this time decided to try another approach with Mikey’s services, writing a recommendation for a Behavioral Services Coordinator (BSC) to come to our house in addition to a Mobile Therapist (MT) to work with Mikey on his intense emotional responses to things. Basically, to help him stop freaking the fuck out so hard over something like his friend not wanting to make believe she is a hay truck.

We dutifully sent this recommendation off to whichever the hell agency, and they denied our services claim.

I take issue with this denial for several reasons. For starters, they didn’t even bother to phone in or show up to the meeting where they are supposed to ask questions about the services. They accepted the recommendation via email.

Then, once they’d read it, they didn’t ask for more information. They just denied our services and sent me a letter, missing page 2, informing me we’d been denied.

When I called to ask about page 2, the agency told me, “Oh, that’s just the page with instructions to file a grievance if you’re dissatisfied.”

So, I obtained my instructions and began the process of attending a grievance hearing to argue for Mikey’s services. Even the phone call asking for the hearing felt overwhelming to me. It went like this:

Them: And why are you filing a grievance?
Me: You denied my son’s services.
Them: Yes, but why are you filing a grievance about this?
Me: Because my psychologist, whom I trust and work with regularly, feels that BSC and MT are appropriate for my son.

They gave me a date for a phone hearing and told me I could invite anyone I wished to sit in on the call. On their end, they’d have the woman who denied our request, her supervisor, and a third-party psychologist.

I spent the whole week preparing for this awful hearing. I had to gather dates and examples of behavior. I had to make a bulleted list of things I’d say to “prove” that my son was a mess and needed this help.

Other parents suggested I not give Mikey quiet time that day and have him run around in the background during the call, making a stink. Easy enough!

To add to my astronomical stress levels for this hearing, the sitter I hired to watch Alex during the call *texted* me that she wouldn’t be coming…32 minutes before the hearing.

Thankfully, I have a friend with a flexible work schedule who was able to come over at a moment’s notice.

I called in to the conference call and our BSC came to the house to also speak during the hearing. I spent an hour discussing all the ways my child is a damned disaster, and it was heartbreaking. It sucked. I felt like a shit-bag.

And he’d been having a pretty awesome week, plus it was the day after his birthday to boot. But I couldn’t say a single word about how he now helps his brother eat breakfast or puts away his clean laundry. How he wakes up at the crack-o sunrise and runs into my bedroom to yell, “LOOK AT THE TREES! THEY ARE GOLDEN!!!”

No, I could only list the ways he lashes out physically and verbally at others, the way a broken stick ruins his whole afternoon and leaves his body stiff and spasmodic. How at the drop of a pin, he shifts instantly from giggling to red-zone meltdown.

Afterward, I had nothing left in me and so I laid down on the floor and cried a little bit.

Two days later, we learned the grievance was denied. Mikey’s services are still denied. Their recommendation is to resubmit the paperwork asking only for a BSS and a Therapeutic Support Staff (TSS).

So, I’ve been spending the week since this denial trying to make a new plan. I’ll let you know when it starts to come into shape.