progress & activities

After a process more painful than the 39 hours of labor it took to birth him, I finally have Johnny's insurance in place. We are sitting at the dentist's office as I type. Since his last visit, they have created an "Adult Lounge" for parents who either only brought one kid or who have sent all of their kids back at the same time. Is the insurance paying for the coffee and tea as well? I'll admit I'm enjoying a few minutes of silence. 

Now that we have both the formal diagnosis of PDD in place and his insurance figured out, Johnny was approved for TSS services. They wouldn't cover overlap for him to transition into it and away from Dave, but at least we are getting somewhere. I am waiting on a phone call to set up the first meeting. I'm unclear of what all it entails since I'm pretty sure he's getting a case manager as well, but I'm just glad that whatever they offer is covered. We don't have the resources otherwise.

So, last week I took Johnny to his school's trip to what used to be (and to area residents will always be referred to as) Bland's Park. They've renamed the tiny theme park DelGrosso's after the family (and company) that owns it, but there is something distinctly strange about a park named after a family's spaghetti sauce empire. Never mind the fact that naming a spaghetti sauce or any other kind of food product a name that contains the word "gross" in it might not have been the greatest marketing idea... Anyway, I took the kid to the theme park with the help of his Aunt Lizzie. Boy, did that kid surprise me. I had decided to participate in the school activity because of his positive experience with the rides at the carnival a few weeks back, but never did I think that my son would want to ride a roller coaster at any age, much less at 4 years old. I guess after all of this time saying how much he takes after me I shouldn't be entirely surprised, but when it comes to the daredevil department, he usually takes after his daddy in sitting things out. Shame on me for boxing him into that mold! He rode all of the rides with ease and absolutely love the roller coaster. "Mommy, I was very scared but I'm brave and I liked it! Can we go again?" Now don't worry, I didn't stick my kid on some huge monster coaster -- it was designed for little kids. He loved being thrown around. I couldn't be more thrilled!

By the end of the day we had ridden pretty much every ride Johnny was tall enough to get on. We played some games (he really kicked butt at the baseball one!) and won some prizes. By the time we got him back in the car, he was nodding off. He was out before we even got back on the highway. Lizzie had spoiled him with extra presents and when he woke as we pulled into the driveway, he began running around with a toy microphone and singing about his "special park". 

I'm taking him to Lakemont Park (in Altoona) in a few weeks with Grammy. 

Coming up with summer activities we can participate in without an extra adult on hand has been hard. He's been going to Vacation Bible School all week for 2 hours in the evening, but it has taken us almost as long to drop him off and then drag him out. He doesn't wanna go, then he doesn't wanna leave. It doesn't help that the entire experience started off with a misspelled name tag (meltdown) and it took until yesterday (day 4 of 5) to finally arrive with one that was printed correctly. And you can't write it by hand on a blank one because then it isn't printed like everyone else. Which, in all fairness, is legit. I looked into other churches doing VBS other weeks during the summer, but I don't know that I trust any of them to handle him. At his current one (hosted by Grace Lutheran, the church Steve grew up in that we as a family attended until last winter) is full of enough people who I know personally. Chalk it up to trust issues on my part, but I don't think we will be attending any other Bible Schools. 

Maybe his new TSS will be able do help us with some community activities? There are a ton to join in on, but I'll need an extra hand.

fight

All I've done for the past 2 weeks is fight. Each and every mental health agency that exists in this state. I finally had a meeting where several of the agencies were represented last week, all in one place. They collectively told me that there is very little anyone can do until my child is in kindergarten. He is autistic, but he is smart. People just don't help smart kids with autism. They aren't behind in the "right" areas of life, so they are completely ignored. Oh, and on top of that? They took away his Medical Assistance and the woman whose job it is to help me loophole him into it is just about the meanest and most spiteful person I have ever met. After over 15 calls and voicemails left over the course of 3 weeks, I had someone from another agency call and harass her as well. When I finally got through to her the same morning, she yelled at me for being impatient. Well I'm sorry lady, but it happens to be your JOB, and you haven't even acknowledged that I have called repeatedly or asked you a question. -- And this isn't the first time with her. I've gone through this migraine every 6 months since we first got on MA. I always make sure I start the process a good 2 months before things are due, (in order to assure we don't have a lapse in coverage due to her idiocy) and it is still this fight. DO YOUR JOB OR GET A NEW ONE, PEOPLE'S LIVES DEPEND ON THE ABILITY TO GET MEDICAL ATTENTION. I'm not even kidding. Because of an error on her part, I have no insurance. This means no therapy, no medication, and I'm not eligible to be covered by Steve's insurance until August 1st. And I am the less worrisome of the two of us. (Steve has his own private insurance that covers basically nothing, but Johnny and I were both on MA). I mean, I get that her job most likely leaves her bogged down with cases, but I STARTED 2 MONTHS IN ADVANCE!!! We are now at 3 months past the date I began all of this. Now that Johnny's formal evaluation and diagnosis have been faxed into this lady, (by another service, not me, so it is even more legit in the eyes of the state) she still won't tell me what the next step is. If I don't take the next step, they will make me start all over again and say it is my fault. If his insurance doesn't pick back up, that means no services for him at all. These agencies only take MA, not private insurance. She is legally obligated to put this paperwork through, and she is sitting on it. You know that slug-looking secretary from Monster's Inc.? That is her.

So all I do is fight. Fight that expletive-inducing horrible woman, fight these programs and agencies, (who at least this time around were nice enough to apologize for being unable to help and seemed sincere) fight yet another summer camp they found that they were "pretty sure" he could go to but who won't take him because he isn't potty trained... fight. How can all of these places that are specifically designed for autistic kids refuse to help him? He isn't fully potty trained because of his diagnosis. He is on the intelligent side of autism, not the cognitively lacking. He's too bad and too good. What the hell?

On the bright side, if they will ever actually give him back his MA, (which, again, he is legally entitled to until the age of 21 because of his diagnosis) we have one option left. A TSS (Therapeutic Support Staff) is supposed to be close to ready to begin working with him in place of the therapist he has been seeing. The change will mean more hours of help and the possibility of attending school with him part-time in the fall to help out there. But until that complete monster of a woman does her job, my entire family is left hanging.

just kidding

So I took Johnny in for his intake with the Stepping Stones people to figure out our goal for him and set a schedule. Except, oh wait -- we forgot to tell you, you can't actually have a kid who isn't potty trained in our program. State regulations and all that. Are you kidding me?

Back to square one. We have a diagnosis, but the school is still fighting tooth-and-nail the idea of giving him an IEP, I have no place to take him for the summer and his interaction with other kids (the whole point of it) will go back down to almost nil. Sure, I can take him to the library or the park and what not, but do you know how hard it is for me to take him on any form of outing without at least 2 dramatic meltdowns? I'm not only mentally exhausted, I'm physically exhausted. I don't even know how to handle my own kid at this point. One meeting for him once a week with an adult isn't going to fix my problem. "Early intervention; make sure you help your child as soon as possible. Get at least 20-30 hours a week of help." Yeah, but how? They stress it all the time, but refuse to give me more than 1 hour!!! With an adult only! And play dates aren't consistent no matter how hard I try to set any up. Heck, other kids don't want to get together with him very often. Add in the 2 weeks of constant rain we've had and I can't even go outside with him.

They want me to go down to Danville and have his brain neurologically mapped. I don't know how I feel about this. First of all, how intrusive is that? My kid won't sit still for anyone, and I don't want him scared to death. Second of all, how is it going to help? I mean, yeah, sure, we might be able to pinpoint his diagnosis a little more, but of what use is that when no one wants to give him help anyway?! And can I please, for the love of Pete, have a copy of all of these documents they keep filling out? I don't even have something in my hands that is tangible to prove that he has been diagnosed with asthma let alone PDD and Behavioral Disruptive Disorder. Just... give me a break here, people!

So I'll be making another list of calls today: Base Service Unit, Penn State's Psych Clinic, Danville, (to ask questions, not necessarily schedule anything) Cen Clear, his teacher Miss Autumn, and of course there is the meeting with his therapist Dave in about an hour.

I'm tired. I feel like giving up at this point and waiting until he reaches the school district where I know I can get some help. But in the meantime, I still have a problem... it isn't like it is all going to go away. It isn't even going to improve without help.

Did I mention that I'm tired?

summer

So, I don't know if I ever mentioned it, but my trip to Charlotte got canceled. After sitting in an airport (that is a 2 hour drive from my house) for over 6 hours, they finally came to the point where they said they could fly us out in the morning. The earliest flight would get me in at 8:22am and the graduation ceremony was at 9. Considering the fact that they live 2 hours from the airport, and even if they did come pick me up to just "visit" afterward it would take 4 hours out of the day where her family was in town, I just gave up and drove home at 12:30 in the morning. No vacation for me. No momgaritas.

Now we've hit the summer. A week ago was Johnny's last day of school, and I don't know exactly when his summer camp will start. In the meantime, I'm looking at endless hours (of fun?) with the kiddo. He is already driving me insane. I think I would have been much more prepared for this if only I had gone on my trip and had a break. I know, wah-wah-wah, poor spoiled girl who was going to get a vacation, but I seriously think every parent could use to take time away from their kids to recharge. I haven't ever had more than part of a day where I was completely removed from my kid. I would die to take a writer's retreat this summer and get a chance to clear my head as well as get some work done that motivates me.

Anyway, we have already gone to the pool twice, (Friday afternoon after he got off the bus and then again on Saturday) trying desperately to escape the full force of our 89 degree weather, but this past week hasn't gotten over 74 and is either raining or very cloudy at all times. What to do? I'm running out of "cool" new home crafts and games to play. I was in childcare too long. My creative juices have run out.

In other news, my wonderful husband did make it possible for me to at least have a day off and do something spontaneous and fun. I took my stepbrother on a road trip to DC on Wednesday and we got to meet one of our mutually adored authors. We walked all around the National Mall and even got to visit my sister-in-law for a little bit on her birthday. After the book signing, (where we met another author whose series I have now started to read because she was quite awesome) we drove home and I arrived in our driveway shortly before 2am. Johnny, in all of his sixth-sense glory, woke at 5:15 and refused to go back to sleep. I was a walking zombie for all of yesterday and so far today hasn't started off much better. Regardless, it was a blessing to get away for even just one day. I didn't think about tantrums or calming strategies, diapers or sugar-free meals all day. Heck, I got to put something sugary on top of my frozen yogurt without being questioned or feeling like I had to add "just for adults" to an explanation. I walked through a museum and actually looked at the things I wanted to look at.

So while vacation plans change, the weather isn't cooperating and my kid is restless, I at least got one good day to kick-start my summer.