There’s the old saying related to starting a business or buying a home, that the three most important things to consider are, “Location, Location, Location”. Well, to borrow that sentiment – when you have a child who’s not hitting those developmental milestones (crawling, walking, speaking, even making eye contact) within what would be considered the ‘average’ time, or is showing other unusual behavior like not seeming to feel pain when they should, the three most important things are “Diagnosis, Diagnosis…“ eh, you get the point…
While not many already worried Parents would be thrilled to find out that a professional assessment of their child might give them a diagnosis of Autism, there is a positive side. And that’s, odd as it might sound – the very thing you’re upset about…the diagnosis itself.
I know, I know, you’re thinking, “Oh yeah! I’m frickin’ ecstatic that my kid’s been labeled as ‘Autistic‘. The world‘s their oyster now!” But to that I’d say, first, I have no idea why you’d want their world to be an oyster or even what that’s supposed to mean! Secondly though, I’d point out that an Autism diagnosis means they’re then qualified for therapeutic services. Which is incredibly important. And, which is also something your child won’t receive if they have a diagnosis such as PDD-NOS.
PDD-NOS stands for “Pervasive Developmental Disorder – Not Otherwise Specified”. Also, known unscientifically as PDD-BS. Ok, I made that last part up, but I think it’s true. PDD-NOS is the diagnostic equivalent of seeing your Doctor for abdominal pain and him or her diagnosing you with a “tummy ache” and then sending you home. You already KNOW your child has a “developmental disorder” because they’re showing delays. The PDD-NOS diagnosis is just a BS term used by inexperienced ‘diagnosers” (yeah, I know, that’s not a ‘real’ word) who follow the text book guidelines for diagnoses and are not skilled or experienced enough to really assess the child by looking beyond those perimeters and find a true, accurate diagnosis.
Think of it this way: your child meets ’text book’ signs of Autism “A” and “B” but “C” is iffy – they could go either way on that. If they choose to call it “Autism” you’ll have resources available to help your child. If the person doing the assessment chooses to call it PDD-NOS – you’ll likely have nothing available to you and your child.
Do I think Autism is being over diagnosed? Well, that’s a good question you ask there, pretend person. I think with the broadness of Autism Spectrum Disorder (ASD), ranging from those who are very severe and seemingly almost completely shut off the from the world around them, all the way to those who are very “high functioning” and self reliant, and being inclusive of everyone with every aspect in between those two points creates a giant umbrella under which a variety of minute differences are categorized.
Autism: it’s the new ADHD! All the 1 in 150 kids are doing it these days.
In short – I don’t care if it’s being over diagnosed. That’s better than it being under diagnosed. And if you’re someone who’s child was recently diagnosed as Autistic you have to decide if you’re going to waste time feeling sorry for yourself, trying to figure out if it was something YOU did. Or who’s REALLY to blame – vaccinations with a mercury based suspension, food preservatives, etc., or are you going to get your ass up and out of your selfish self pity, be a parent and go out there and exploit every resource available to you to help your child?
Since being diagnosed with Autism, Oates had been receiving in-home therapy services while she and Hall were living with their old Foster Mom. Oates had 3 therapists: an Occupational Therapist (or OT), a Speech Therapist and an Early Intervention Therapist.
Those therapies were now going to transfer to being done in our home. And I had no idea what to expect. Or even what some of them were going to do. I’d never dealt with anything like this before. I mean, the Speech Therapist, yeah, I could easily understand what they did, I wasn’t THAT stupid! But I had no idea what an Occupational Therapist was or what they did. I assumed it was something that related to helping Oates get a job. And “Early Intervention” I guessed had something to do with keeping her off drugs.
While I felt pretty sure Oates wasn’t on any drugs – after all, I was with her 24/7 – I couldn’t help thinking at the times when she’d be manic, running around the house, hitting herself and me, that perhaps she just might’ve stowed a little tiny crack pipe away somewhere that I hadn’t noticed.
Even though I was quite certain that our new little 3 year old wasn’t a crack head, I still hoped that whatever the Early Intervention person was going to do worked. Otherwise the Occupational Therapist would NEVER be able to help her get a job!
But, alas, I was wrong about what those two therapists did. Just as I was wrong in assuming that all three of the therapists would be hard working, caring, trained professionals who were devoted to the well being and improvement of their little clients. To put it in “Churchill Downs” terms, There was going to end up being a Winner, A Placer and a (No) Shower.
The first therapist to come to our house was the Early Interventionist. She was from a place here called “Parent Infant Programs” that specialized in play-based therapy for children under 5 years old. On that first visit to our home the therapist came along with her Supervisor and the Program Manager. Which though it might sound as if that would make for a very formal, dry and stuffy first meeting, it was anything but.
The Supervisor and Program Manager hadn’t come along for any real ‘business’ reason – though they readily answered any questions I had about their therapy. They’d come because they’d been working with Oates since her Autism diagnosis and they’d known that she and Hall were going to be transferring from the Foster Home they’d been living in and they were genuinely concerned about the fate of both kids.
They knew it was a strong possibility that Hall and Oates would go to different homes. After all, Hall was far easier to place in another home – Foster or Foster to Adopt. He was only one year old and had no known disabilities or behavior problems. Oates though had just turned three and carried the ‘stigma” of an Autism diagnosis and the behavioral issues (some real, some just assumed by people due to their not knowing a lot about Autism). So, when word got around their office that the kids were going to be placed – together – in a Foster to Adopt home AND that it was still in the same city, so they would be able to continue Oates’ therapy, they were relieved, excited and wanted to get to know us.
Once they arrived and we were all sitting in the kids room talking, they kept remarking on how nice the bedroom was. I’d told them that we’d wanted to see their room at their old home so we could kind of arrange the furniture the same or find anything else we could do that was similar to make this room as familiar as possible to the kids. But, since the Foster Mom and her family had been only a few days away from moving, she told us it was a mess and wouldn’t let us see it.
Apparently though, it wouldn’t have mattered because from their description the room Hall and Oates had at the other Foster home hadn’t had anything special in it. Just plain white walls, two cribs and some toys. It certainly hadn’t been decorated with a colorful jungle animal mural that spanned one entire wall or been painted a very pleasant shade of light green.
And yes, if you’re wondering, I DID point out the hole behind the door and bored them with my tale of how it’d once been so perfectly repaired. I’m sure while doing so my voice trailed off and perhaps I was, for just a moment, lost in the sweet memory of my brief achievement.
The two things I liked most about these people were that – one: now that Hall was old enough to understand and participate in many of the play based therapy games Oates received , they were letting him. He didn’t need the therapy. They weren’t going to get paid anymore money for working with 2 kids instead of just one. But they included him because they cared enough to do so. He was certainly learning a great deal from joining in and it benefited Oates by giving her a peer to interact with. And I think it profited both kids and strengthened their bond, which already seemed very strong, by just sharing an activity like that together.
The second thing I liked most about them was that the therapist always welcomed me to join the sessions. And I’d usually do so for the last 15 minutes of each one hour session. If I went in too early, I became a distraction for Oates, who would then want my attention and her focus would switch from doing the activities to making sure that I was seeing her do them. Admittedly, I often took the first 45 minutes to either complete some chore or just sit on my bed and rest.
The four of us talked that day about pretty much everything related to the kids. I asked a ton of questions about the therapy itself and things I could do to help her when the therapist isn’t there. As well as asking questions about what the kids lives at the old Foster home had been like. I’d mentioned that my wife and I were still hopeful their previous Foster Mother would come through with giving us some pictures of the kids taken while they lived with her – but realistically, we doubted that was ever going to happen. I think it was the therapist or her supervisor who immediately told me that they, themselves, had taken quite a few pictures of Oates during that time and thought there might be at least one of Hall, too, and they’d be happy to email them to us. To this day those pictures are the only ones we have from that time in the kids lives.
During that conversation they told me something I hadn’t been aware of – which was that Oates’ in-home therapies were going to be ending at the end of the next month. Actually, I may have been told that by Seka before, but hadn’t been ‘aware’ of it – because I wasn’t listening. That happens a lot to me. Well, according to my wife anyway. At least I THINK she says that. I’m not always listening. But it sounds like something she’d say.
When a child turns three much of their therapeutic services start being handled by your local School District. Which in many (I’ll say that instead of saying ‘most’ – which, though true, sounds too negative) cases means you’re going to have to start fighting your way through Individual Education Plans or “IEPs” as they’re known in the “School’s gonna try to screw your kid outta the help they need” business.
I’m only going to say a little about IEPs right now because the information you can find through a simple Googlin’ is more detailed than I could ever be here. But I’ll talk about our family’s IEP experiences another time. Because if I start now I’m going to be getting too far ahead of things in the tale. So, I’ll just tell you what I think is most important…
The only thing you need to know about IEPS is – EVERYTHING!. The School’ll know everything. And if you don’t go in prepared, knowing what your child is legally entitled to and you’re thinking the best of mankind, and that life is all rainbows and lavender scented puppy farts AND that the School’s going to want to help your little one receive any and everything they deserve and are entitled to – you’re going to wind up naked, face down in the showers, getting screwed harder than the new arrival in prison who bent over to get the soap! You know, metaphorically speaking.
If you can find a Family Advocacy Group in your area, seek their help. Often you’ll be able to have someone from a place like that actually attend your child’s IEP with you. And their help can be priceless.
The last thing I’ll say about IEPs right now, and handling your child’s transition in services to the School District is: Don’t be scared, don’t be nervous – just be prepared and educated and you’ll do well.
So, getting back to my main topic this time around…
When I’d learned that Oates’ in-home services were going to stop in about 5 weeks, I made it my mission to learn everything I could from the therapists she had. But unfortunately, it was only the therapist from Parent Infant Programs who was kind enough to let me sit in on the sessions.
The second therapist to visit our home was the Occupational Therapist. She dealt primarily with the ‘sensory issues’ and motor skills deficiencies Oates had then. She’d work with Oates on things as simple as getting her to be willing and able to touch certain textures, developing her balance and hand eye coordination. And Oates was, and still is, very centered around oral sensations – she’d bite her hands, her tongue and chew on anything she could find. That never really was helped by the OT though.
The OT was always great about telling me what she was doing, the goals she set for Oates and where she was in accomplishing them. She always gave me copies of her progress reports as well as other papers telling and sometimes showing in drawings, things I could do to help Oates. Things like the deep pressure and she even gave me a tightly bristled plastic ‘brush’ that could be used for soothing Oates when she was upset by running it along her arms. Whatever it was about that sensation that was supposed to be soothing didn’t work on Oates. She didn’t care for the brush, so we didn’t use it more than once or twice. I think Oates still may have it somewhere and uses it as a hair brush for her dolls now.
The OT had obviously been very helpful to Oates and by the time she stopped seeing her a few weeks later, all of the original goals set for Oates had been met. At least, the OT said they’d been met and I had, and still don’t have, any reason to doubt her. She was professional and always willing to talk. But she’d never let me sit in on the sessions. And she always saw Oates alone in the room with the door closed. No Hall, no me, included.
As I wrote that I realized it kind of left things open to all sorts of creepy possibilities as to what was going on behind that closed door. But, trust me, it wasn’t anything like that. That was just how the OT worked. She wanted Oates’ full attention with no distractions. I mean, I suppose she could’ve been just sitting in there doing nothing, sleeping on one of the kid’s beds for an hour. But that wasn’t the impression I got from her.
The one thing I remember most about her was that she had that facet to her people get, and you’ll see it in Grade School teachers sometimes, when they’re obviously spending the majority of their time around children and almost forget how to talk to adults. It’s not so much in the tone, meaning the OT wasn’t talking to me like I was a child. It was just that she wasn’t ever really talking WITH me – as in having a conversation. She was just talking TO me. When I’d ask a question, she’d answer it, but not in the ‘usual’ adult to adult way, where you, maybe unconsciously, pepper your answer with an occasional, “ya know?” to gauge whether the other person is following, understanding or even paying attention to what you’re saying.
What she would say was always helpful and correct in it‘s correlation to what I‘d asked. But there was a part of me that really expected her to add a “now get your juice cup and go sit on the rug” to the end of it.
She was about as close to 180 degrees away from the casualness of the people from Parent Infant Programs as one could get, but that was all right. She was polite and kind, always on time, and seemed sincerely focused on helping Oates. As well as helping me help Oates.
So, when it was time for the Speech Therapist to come I felt confident we were on our way to the “Hat Trick”. We were gonna score the third goal for Oates! We were two for two! This was great! This was working out even better than I’d hoped. Oates was obviously comfortable with everyone I’d met so far. I was comfortable with them, too. And even if the OT wouldn’t let Hall or I join in, we’d make the best of it and have some time together to do guy stuff – like build a house, work on cars or go to a titty bar! OR, do what we always actually did during that time which was watch Blue’s Clues. Manly men watching a Manly Blue Dog!
Ah, but alas, it was not to be. The Hat Trick, I mean. For the Speech Therapist would prove to be nowhere on that 180 degree scale from casual to professional. No, she, who’s name I only remember sounded like a man’s name – you know, like a “Ronnie” or a “Billie”, something like that – would prove to be what society and every parent of a 20-something child still living at home and playing video games, would call an “Underachiever”.
While I’d felt certain the OT was in the closed bedroom with Oates trying to get her full attention and do the best darn therapy job she could every time – I felt almost certain RonnieBillie might’ve been spending her hour with Oates, also with the door closed and Hall and I excluded, laying on the kids beds smoking a doobie. Well, if I hadn’t been aware of what a doobie smells like thanks to my first ever concert – Aerosmith 1984. I could fill up an article or two retelling THAT story! But I won’t. Just for the record though, that tale would center around the fact that I think of everyone there at that show – audience AND band – I was the only stone cold sober one that night.
The point is, it’s only the lack of pot smell that let me know that wasn’t what RonnieBillie was doing. Which made my next guess be, and I still think this might be accurate – she was probably sleeping.
Granted, in the purpose of being fair, I don’t know how you can really judge a Speech Therapist’s success when dealing with a child who is largely non verbal. Other than to point out the fact that the child they’d been ‘working’ with for over a year STILL hardly speaks?? I mean, that might be a fair assessment of how well a Speech Therapist is doing, right?
I always questioned why RonnieBillie was a Speech Therapist at all when she didn’t seem very good at speaking herself. She was probably in her mid thirties but still had the same hair style of long, parted in the middle and brushed straight down that she’d probably had in high school. As well as retaining all of the Social skills. personality charm and the “I have a job, but I don’t feel like going in today so I‘m gonna call in sick – right as I‘m expected to show up” sense of maturity and responsibility of a teenager, too. In that way, to her credit, RonnieBillie truly was Forever Young!
What RonnieBillie wasn’t however, was any help or benefit to Oates. And that was really disappointing. A sentiment I conveyed to Seka but with Oates’ in-home therapies down to the last few weeks, no change of Speech Therapists was going to be considered. And, just having had the kids for a couple of weeks, we didn’t have the skills or know how yet to get things done that needed to be done.
I was upset with RonnieBillie, not for being the F-up she was – that was her and her parent’s doing! – but because she’d been allowed to waste so much of Oates’ very crucial “early development” time. Maybe Oates would’ve been farther along in her ability to speak with another therapist. Maybe not. We won’t ever know. But I felt fairly confident that RonnieBillie’s indifference and her obvious inabilities didn’t just start when the kids came to our home. But that her behavior, her failure to illustrate ANY progress and her habit of not showing up, had probably been consistent throughout the time she’d been seeing Oates. But no one had taken any of their own time – for Oates’ sake – to say or do anything about it.
It made me realize though that I had to be more hands on, more involved and learn whom I could trust and whom I couldn’t. The OT and all the people really from Parent Infant Programs were so good at what they did that it’d kind of made me let down my guard and assume that I could expect the same dedication and results from others. But RonnieBillie, like a slap to the face, snapped me out of my Utopian fantasy.
Around the third week of the remaining 5 weeks all 3 of the therapists told me when they would stop coming. The Early Interventionist from Parent Infant Programs said she was going to continue until the very end – and she did. In fact, I think she went a visit or two past the end time.
The OT told me she’d accomplished the goals set for Oates, gave me more paperwork about that and said that the end of the 4th week would be her last visit.
RonnieBillie. midway through that 3rd week, told me she was going to finish out the next two weeks and stop the end of the month, which would’ve had her and the Early Interventionist ending at the same time. However, the beginning of the fourth week, 20 minutes before she’s due to arrive, the phone rings and it’s RonnieBillie saying she’d forgotten she was having new windows installed at her house that day and couldn’t make it. Which seemed like such an odd excuse I was actually taken aback by it and had no response other than to think to myself, “if that’s true, she must be one of the stupidest people I’ve ever known! I mean, who ‘forgets’ you’re having windows installed? Pot heads, maybe.
Anyway, that was the last I ever heard from RonnieBillie. And I mourned not seeing her again with the same amount of longing and loss I feel when removing an ingrown hair.
So, the 5 weeks came and all of Oates’ in-home therapies stopped. And amid the bio family visitations, the daily duties done when caring for two toddlers and all the stress that brings, emotionally preparing ourselves and worrying about the upcoming Court date, still a few weeks off – we waited for someone to let us know when Oates was going to have an IEP and her services be transferred to the School District. We waited for someone to ‘pick up that ball” and “get it rolling”. We waited for Peaches to return our growing number of phone calls about it. We waited for Seka to figure out what was supposed to happed now and who was supposed to do it.
All the while, Oates was going without any therapies whatsoever…as we waited. And waited. While no one did anything.