Thursday, November 19, 2009


OK, so Bennett had this surgery, and since the surgery no seizures. Yay? Yay. Yeah, that's pretty cool, and I'm tickled pink. GREAT day in the morning it is so awesome to not watch him go through THAT shit anymore. Sickening. No child deserves it. None. I don't care if they like Barney. Nope, don't deserve it.

Now, since that surgery, he's learned some stuff, he's figured some stuff out, he's seemingly getting some more sophisticated motor skills. He goes down stairs now, in addition to up. Yup, that's a big deal. He has more depth perception. He is putting a FEW more things together in his head. But just a few. It's slow going. Figures that it would be, the kids skull was open less than three months ago with people digging around inside it.

Still no real language skills, still no real conception of words and communication on the most basic of levels, still a lot of deficits in cognitive thinking. A lot. It's remarkable how much time as a parent in a situation like this that you spend at your child's level. And how much you sort of live in their particular moment (defense mechanism) rather than thinking about all the shit your child CAN'T do.

You'd actually be surprised at the fantasy world in which I live some nights, closed off from the rest of the world, playing one on one with my son, making him giggle or smile and thinking of NOTHING else but that moment, that singular connection that only I have with him. It does happen, and I do enjoy it.

And it works, a lot, to help me stay grounded a little. Until you have a 'special occasion' or 'something else' to remind you of how far behind your child actually is. We had one of those 'special occasions' last weekend (birthday), and yesterday we had one of those 'something else's' evaluation to determine whether Bennett can be categorized as being on the 'Autism' Spectrum.

And the winner is...Bennett Lilly! Congratulations. You have now been officially labeled with a diagnosis of PDD-NOS, which stands for Pervasive Developmental Delay - Not Otherwise Specified. Um. Wuzzat? I'm sorry, but can you possibly just be a little MORE vague people, please? I'm not lost enough with this shit, can you confuse me a little more?

OK, so I get it...he needs to have this diagnosis, in order to qualify to maybe get some help he so desperately needs. The kid can only get one or two hours of speech therapy a week, a couple hours here a couple hours there of physical or occupational therapy. Ain't enough. I mean...just AIN'T enough. He needs a ton of help. Dropping him into a traditional Day Care setting? I'm not gonna lie, I hoped he would just blend in, just 'get it', and Jen and I would look at each other and realize that it was now gonna get easier.

That isn't reality.

That traditional Day Care setting, while he is having some fun there and at least not trying to bite the faces off of the other kids, is just not teaching him anything. So there's this option. If it is determined that Bennett is delayed enough to fall into the Autism Spectrum, he's eligible to attend a special day care, where he would receive, for 7 hours a DAY, one-on-one interaction with a therapist applying a teaching technique called ABA, or Applied Behavior Analysis. Awesome, another thing I need to research.

Is he really Autistic, this boy? I dunno. I don't think so. But what do I know? Hell, the psychiatrist didn't think so, not in the 'official' sense of the word. But is he delayed? Oh yeah, you bet. Does he meet some of the criteria? Oh yeah. Is he now on the spectrum? Yup. But that phrase, that PDD-NOS. It just pisses me off and I really do not know why.

On the one hand, maybe this is good...maybe this will open some doors for him, cause I certainly don't have the ability to open any doors for him. I don't have the skills or the training or even the time. On the other hand, it is yet another diagnosis, yet another sub-group to which we belong.

From my own point of view as far as community and research, I have NO idea where I should spend my time, and now I don't know WHERE to really try to fit in. Do I focus on being a part of an Epilepsy group of parents, or Brain Tumor group, or Autism group, or some other? Whatever happened to the Internet as a place where I talked about toys all the time?

The times, they are a changin'.

How do I gain the most knowledge about any single aspect of what it means to be his parent when I am stretched so thin as it is mentally, as each day passes I feel even more as if my tenuous grip on my own sanity will just...snap. Having yet another thing to try to learn about? Makes it that much more of a difficult journey.

But what of Bennett? Will this be his best road? I hope so. I also hope the Medicaid waiver covers that school. I don't know about you but I don't have an extra 3 grand a month. We'll see. I think they do, and we were put on a waiting list, so we'll see. I doubt anything will really happen about all of this until the new year. Maybe longer.

Past two days have had that and a Bennett who has been not crying, but SCREECHING. It's a headache causing screech and it is often. He does not feel well, something is off. We don't know what. Probably the FUCKING H1N1 mist vaccine that Jennifer decided he had to have. I'm opposed to all vaccines now, so I deferred as she knows best when it comes to all things medical. But I just want the screeching to stop. And for him to feel better obviously.

Went back to the doctor today too, might as well fess up to that. It was a late afternoon visit, which I HATE doing because it is the end of the day and nothing is on time. Nothing sucks more than having your thumb up your ass in a waiting room for an hour, especially when its getting near dinner time and you are the one supposed to be getting the dinner on the table.

Explained the fiasco of the week before and the fact that I can't take a serotonin-norepinephrine reuptake inhibitor for an anti-depressant. Had issues with it before and I did not know that Cymbalta was in the same family. He prescribed something I was on before, Lexapro, so we'll see if it helps. Guess it can't HURT, but I think sometimes that no medication will help unless I am ready to meet it halfway, something I am not doing a lot of right now.

Some people will understand what I mean by that. Some won't.

Anyway, game is gonna come on, feel like watching some ball. But Dolphins and Panthers? I seriously hardly give a shit. But football is like sex. Even bad football is better than no football. So I'm gonna go get me some.



  1. As an educator, a label can be a means to an end. A way to qualify for funding you wouldn't get without it. As a parent it's a whole other ball game. Glad to hear Bennett is doing well :)

  2. Don't buy into the anti-vax BS, Ken. Your wife did the right thing. Better some minor irritation now than a fatal swine flu case (or if not, at least spreading the epidemic to other children who are more at risk). No vaccines means the return to the days of smallpox at its deadliest, polio, and worse.

    I can understand being distrustful of some of the medical profession and such after what you've been through, but science is still learning when it comes to the brain (and yet is better than it ever was before), but epidemiology is by comparison the basics, well-proven and effective. When you don't get vaccinated, you aren't just putting yourself at risk, but everyone else you come into contact with.

    Think of being unvaccinated as like blowing second-hand smoke in a hospital waiting room. Surely smoking isn't going to bother everyone else that much, right?

    As a diabetic and asthmatic, I'm doubly at risk for both seasonal and swine flu, and just ran through the hoops to get both the last couple of days. My shoulder still hurts today like a mofo from the seasonal one. I used to get badly ill in the winter nearly every year...ever since I started making sure I got my vaccinations, that's gone away. Not saying that's the only reason, I've done other things, but every little bit helps.

  3. Well labels suck. But I will tell you Daniel has a few labels that he barely "qualifies" for but were given to him so we could get additional therapies and treatments. At first I was totally against the labels, but now sometimes I'm like go ahead pile them on....because he will get more help, ya know what I mean. Help that I wouldn't/can't afford to give him otherwise.

  4. If you were to read Zoey's vision evaluation,one would think she could absolutely see all ... whatsoever.But it reads what it reads so she can qualify for much needed vision therapy which otherwise might be more difficult to come by and to tell you the truth,I just wouldn't have the fight in me.I think in the end,it may just makes things easier and you guys sure could use easy.Don't you think?

  5. I **LOVE** ABA therapy. Sophie received 6 hours of ABA therapy a week when she was in EI (she now receives 12) on top of all the other therapy she was receiving. On the VERY FIRST DAY she learned to sign "more". Within a few months, she learned how to appropriately play with her toys and her attention span increased. I could go on and on.

    By the way, Sophie received ABA therapy at home while in EI.

    And the Barney thing...Sophie and Elsa both LOVE Barney. They watch him EVERY SINGLE DAY!!! Drives me crazy because they don't really want to branch out but it at least will keep them entertained once in awhile.

  6. A label is for other people not parents and not children. He is still Bennett to you. Face it we are all labelled. You go down to the bank to borrow money and they have a label for you...

    Are you sure he had the mist. It's contra indicated for kids with underlying neurological conditions.

    Ours was to have the shot tomorrow but we have to cancel cause we're treating for possible h1n1

  7. I'm with Heather, My Emilia just had testing done to determine if she still qualifies for EI. According to the tests, a goldfish can do more. Whatever! As long as it gets her what she needs! I know what she can do and who she is and what she can become.
    Just use it to get Bennett all the help he needs. make it work in your favor.

  8. Connor got the PDD-NOS label at 20 months. For me, it was a means to an ends. It got him into a special needs school. It got him extra services and medicaid waiver status. It opened doors. Doors that I didn't have the financial key to open for him. Doors that made a HUGE difference in him.

    Here we are 4 years later. Though he doesn't have the same health background as Bennett, those years of intense therapy (not ABA) have made him a MUCH better kid. He can play, he can comunicate, he's in a typical K class. He doesn't perseverate, he doesn't insist all tihngs are done the EXACT.SAME.WAY.

    He now has an Asperberger's label, but it's probably not necessary. Yes he has his quirks, but the teacher says he's no different than the other K kids.

    So yeah, it stinks to have the label, but it's in Bennett's best interests to get all the help he can get.

    I totally hear you on the med thing.

  9. Wow, you can't seem to catch a break can ya? But maybe this will end up being a good thing. Like some of the others have stated: He is still the exact same kid he was before that doctor labeled him PDD-NOS. Nothing has changed, except perception.
    And good for you for getting on Bennett's level and enjoying who he is. Not everyone can see their way to do that, but it's the right thing to do. Just like I think it's ok to mourn the things he can't do. I struggle a lot with family parties. There are two of KC's cousins who are within 2 months of him in age. It sucks big time. They have always been so far ahead of KC. And the older they get, the more obvious the differences. It sucks and I have given up on trying to tell myself it doesn't. People say don't compare, but how the fuck are you supposed to not? I mean, come on. Everyone does it.
    And I have to comment on the vax issue. The argument of it being a danger to everyone else is wrong because if the vaccines work, those who are vaccinated should not need to worry. Also, the nasal spray sheds live virus for 30 days after it is received! And we wonder why we have an epidemic on our hands...
    Sorry...I have to say it. My son's problems were caused by vaccines. He suffered a brain injury due to his pertussis shot and since then our lives have been so freakin hard. It's not so much that it happened that makes me mad, but that so many people deny that it happened. I live with the effects every day. They need to make the vaccines safer.
    Ok...sorry...I will stop now : )

    Good Luck,


  10. PDD-NOS, as best I understand it, is a label they give kids that don't fit anywhere else. They aren't autistic, they aren't mentally retarded, they don't have a syndrome, but they are delayed.

    Just use it as a way to qualify for services and continue to think of Bennett as a child who happens to have challenges.

    The best part of the waiver? RESPITE. =)

    My son just had an IQ test that will probably tell me his abilities are in the 2 year old range, and that is BS. Science/psych = imperfect. He hates the testing and the enevironment SUCKS.

  11. There are a lot of other blogs that talk about PDD. And it is similar to Autism and Fragile X. You'll find information and support in many places, I think.

  12. Unfortunately, a diagnosis on the Autism Spectrum is often an end result for IS children. We're one of them. Where we live, a diagnosis of PDD-NOS is considered a diagnosis of Austim. The awesome part is, like many others have mentioned, is that it allows you to access services and intervention. We get 31 hours per week of ABA, in addition to 6 hours a week in respite, travel and medical expenses, speech pathologists, and various other financial supports.

    And quite frankly, the Autism thing is way easier to explain to people than the Infantile Spasms.

  13. You may be interested in this blog too...Facing Autism in New Brunswick...a dad blog, very well researched...political, not personal. Has excellent vaccine issues too...reasonable.

  14. I'm like a lot of other parents here--I collect diagnoses the way other people collect baseball cards. In a way, I think I take a preverse pleasure in the whole thing--go ahead, pile 'em on!

    Charlie would totally qualify as having autism if I had him tested--I just haven't seen the need, and trust me. . . he is SO not autistic. He's extremely social and interactive--he just has a lot of other issues that prevent him from doing things like pointing and other things that normal two years old do.

    I thought you would enjoy this. . . there are sign on the side of the road in Louisiana that read "Bless you Boys, 10-0" and I mean those light-up construction signs that are supposed to warn you to get over in to another lane or something.

  15. Oh, and can I say? I dont' trust vaccines either. Yes to things polio and tetnus, but I think our current vaccine schedule is un-researched and I'm not playing ginuea pig with my kid.

  16. We got our seasonals and our H1N1s....Also got the pneumonia shot as recommended by Colby's cardiologist & neurologist....I said a prayer as we got them, but I was afraid NOT to...So far, so good...So we shall see...

    You have some VERY smart parents here....I have to ditto pretty much everything they have said about the labeling....It is a means to an end....Whatever it takes to get the services that Bennett needs at this time....

    I predict these interventions he gets will be just what he needs to make huge leaps and bounds...As I keep repeating (sorry!), he is SO very young and his brain is SO malleable right now....He has SO much time to catch up...I know it is hard to have patience, but it is true...

    And believe me, I know about the "comparison" thing....Oh so well...Even most all of the sp. needs kids that started preschool w/Colby have surpassed him in most/some ways...That was harder to take than the comparing to the "normal" kids....I truly believe Bennett is going to start progressing more normally sooner than you think...But if it doesn't happen right away....And I know you can't possibly believe me at this point....But that comparison thing DOES get easier as time goes on....I PROMISE you...

    I can just see you and Bennett in your own little world.....It helps to "get lost" in their worlds when you have the opportunity....Just to shut everything else out...



  17. Mel:
    I completely agree that it is a means to an end. I was more jarred then than I am now...some things you just need time to adapt to.

    I do buy into it, sorry Bry. I agree with many of the vaccinations and support them. Some I just do not anymore. And it isn't even that I opposed to giving them, it's more how they are stored, additives and administration. Hell, a vaccination activated Bennett's dormant neurological issue, that is a fact no one can dispute. Within 24 hours of receiving his DTaP he was seizing and continued to do so every day for 7.5 months. I look back and think to myself that maybe that was a blessing, that it helped us discover a rather dangerous tumor before it was too late. But that's a mater of spirituality, not science. The science is that there was something contra-indicative in this vaccine that reacts to neurological issues that I never knew about until later.

    I do not distrust the medical profession. I distrust barreling forward on anything without all the facts. That goes for medicine, food creation, hell even product design. Planning and testing is something that should happen for all things that are consumed or used by a bulk of the population.

    I'm with you there...bring on the labels if it gets him the help he needs.

    Yup, I agree.

    ABA is an interesting technique and now that I have studied a bit more about it I hope Bennett can get into this center. It could be hugely beneficial to him.

    Yeah he had the mist. And yeah I know it's contra-indicated. This was against my wishes, but I can't dwell on it now.

    Looks like you, I and a lot of us think that this is a means to an end, and a good means.

    That was actually the first time I'd ever even heard of it, reading your blog when I was first familiarizing myself with this world of ours. But yeah...I am cool with it now.

    KC's Mama:
    No need to stop on the vaccines thing. I think further investigation is not only warranted but we as a society should feel obligated to scrutinize EVERYTHING that we are doing to ourselves. I mean...we have become a chemical-based life form when you think about it. That can't be good.

    the other lion:
    I'm still not ready for the respite thing. We've had access to it for months now through EI, and I am just not comfortable leaving Bennett in anyone's care other than family. As you can imagine, my wife and I are almost never, ever alone. But for now, that's how it has to be.
    I'll have to start digging around at those blogs and forums, I just don't really know how to manage it all timewise. Work is busier now for me that it ever had been and will get busier, which is fantastic don't get me wrong, but I also like to write this blog, as a hobby I sell stuff on eBay to generate some extra pocket cash, and then spending time with the kids. I wish I only required 3 hours of sleep per night to feel totally rested. Think of the doors THAT would open.

    Isn't that crazy about the terms Autism and others, that actually ARE just sort of easy for a person to get their head around over something like IS?

    Thanks I will check it out.

    Your town SHOULD be celebrating 10-0. That's astounding. I have always liked the Saints, they are definitely in my top 4-5 NFC teams to watch.

    I believe you. I absolutely do. You are a veteran, how could I not? Out of all of us you probably have had the most years navigating this sea, so I take much of the things you say as coming from a very experienced source.

  18. PDD is an English technical term, so I had never heard it before.

    NOS on the other hand, I have heard before for over 20 years. Even thought it is also an English technical term, I am very familiar with it, because it's the sub-diagnosis they give when you don't fit it to any known description of the main diagnosis.

    In Bennett's case, he doesn't seem to fit in any of the pre-established PDD definitions so they gave him the extra NOS.

    In my case I'm not really Bipolar, but I also don't fit in Major Depression 100% of the time, so they decided to brand me Bipolar-NOS which I laughed my head off when I heard about it, because I'm one of those people that likes to have a label that actually tells me what my problem is, but, like always I guess, I don't fit in any existing category.

    What Bipolar-NOS did for me was give me a way to be covered by a special section of the Portuguese Heath System, that makes me a priority case in some instances, and also allows me to buy my medications cheaper than before, because the government pays for most of it, because it's considered a chronic illness.

    So I'm hoping that they just fit Bennett with the PDD-NOS in order to do the same for you, and so your insurance will cover it.

    Hope your new meds actually help you about this time, but like you admitted knowing, the meds aren't going to change anything, if you're not willing to do your part.


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