Monday, September 1, 2008

Jaymes can fly!

Ok, no he can't. Another bad day, the whole anger/agression/violent outbursts thing has escalated to a point we can no longer handle. Jaymes jumped off the deck today and cracked his poor little head, bled a lot (scalp wounds bleed a LOT) and he's got a huge bump. He's covered in bruises and bitemarks. He also pushed Sierra off her chair and split her lip open, poor baby.

I finally couldn't take it anymore and dug out the Risperdal. I know we're supposed to not have him on it (we'll be starting new meds later in the month) but I'm not having him kill himself or anyone else.

I gave him a double dose, followed by one more dose 2 hours later, and the remainder of the day was blissfully silent and happy. Jaymes was very sleepy, and in that zombie stupor I hate... but he was pleasant, cuddly, cheerful, and had fun playing with toys at Target before falling asleep in my arms.

I hate drugging him up. I really, really do. But he could have killed himself today, and I've had it with me and Sierra getting hurt all the time too. No more of this.

The specialist we've been waiting nearly a year to see called me today. Weird, that the doc himself would call me on a holiday, huh? Turns out last Thursday, on that horrible horrible day at therapy, the doc was there in the therapy office. He heard for himself Jaymes' frenzied screams. Thank god.

So yes, I'm happy and hopeful and feeling a bit more positive.


Anonymous said...

Let me say that I admire you and really like your blog. Your honesty about your son is wonderful. Many parents who blog regarding their autistic children really sugar coat things to make life seem "simply wonderful." Trust me, it is not!

I am wondering if your son is in an intensive ABA program? Has the school he is in done a formal FBA or FA? They would be required to do one by law.

Jaymes would do so well in an intensive 30-40 per week ABA program and I am wondering if his Neuro. has ever written specific recommendations for this? Even if Jaymes could get a good amount of home therapy and then be integrated in school part of the day, that would help tremendously. Keep in mind, the quality of the ABA providers make all the difference in the world. Many districts claim they do some watered down version of ABA, but that is quite different from high quality ABA.

I have seen, worked with and advocated for many children like Jaymes (many much more severe) and there is a lot of hope. Watching those clips it is easy for a trained eye to see what a smart and truly high functioning child he is. Don't let his behaviors fool you! As awful as they seem (and are, I know) there is an antecedent and function for every behavior that can be dealt with one by one.

Casdok said...

It can be so difficult cant it.
What new meds are you going to try?

Glad your post ended on a positive note!

Amber DBTD said...

Ok.. Lots of questions to reply to!

Let's see. Jaymes is not in ABA, because Medicaid does not pay for it. We're on the wait list for CAP (NC's Medwaiver I guess), and then that will cover some (I don't know how much) ABA. No idea how long it will take for him to actually GET the CAP, or how it all works from there. We just can't afford to pay for ABA out of pocket, so we'll have to wait.

The school refuses to do the FBA because Jaymes has not misbehaved at all in school Apparently, he's a sweet angel there and I'm crazy to expect them to waste their time.

As for meds.. I do not know what will be suggested. Adderall had been suggested a couple months ago, and has yet to be explored. We're headed back to that doc in October. Clonodine had been offered, but I'm uncomfortable with it because she told me it could cause Jaymes' blood pressure to go funny and he could pass out. Risperdal and Depakote had been the original combo.

Anonymous said...

Districts can be such liars. They are responsbile for Jaymes' education and behavioral issues not only during the school day but throughout his day! Districts always try to lie about this one! Also, if the Neuro. writes that he needs intensive ABA then I would fight the district and have them provide that and fund it.

Do you own any of Pete Wright's books? They are excellent or go to their website (Wright's Law). I'm sure the district is in violation of many points---most are.

Amber DBTD said...

You know, I've scoured the Wrights Law site, and I simply cannot grasp the concepts. I feel like I cannot fight the district if I don't understand the laws, and I could read all day and it just doesn't make sense to me.

According to the Preschool Intake folks (the ones who handle Jaymes IEP and all evaluation stuff), if Jaymes is behaving in school there is no reason to do the FBA. The teachers claim he is perfect, which can only mean he is being allowed to wander free and do as he pleases, with little to no one to one time. I'm sorry, but I know Jaymes, and he's not angelic unless he's got an endless supply of toys and no guidance or structure.

The PSI office also says that ABA is not offered by this district and that there ios nothing i can do. They make me feel like I'm overreacting, and trying to be a control freak for asking for a new IEP, the FBA, etc.

They did OT/Speech/PT testing on him last fall, prior to starting school here in NC, and to be honest, he's not the same child he was back then. I feel like redoing the testing and new IEP goals would be ideal. Goals like "Jaymes will write his name in pencil by 2009" are bull. He may learn to HOLD a pencil correctly by 2009, maybe to draw lines and circles, but for sure he will not be able to write his name. It's simply not an attainable goal.

I just hate feeling like the bad guy.

Anonymous said...

You're not the bad guy, the district is. They hope parents will just shut up and go away. To me, that is criminal and I see it happen over and over again. They are wasting kids'lives everyday by this negligence. Get a good advocate.

An IEP can be changed and addressed at ANY time. Please find someone who understands IDEA very thoroughly....the district is full of it. I see it constantly and they hope they can intimidate and scare the parents off.

The first thing I would do would be to have a highly qualified BCBA go in and do an evaluation on Jaymes in school (and at home and in the community.) The district can not deny you this right. A good indepdendent eval. will undercover just exactly what is going on in the class. Even if he is "behaving" as they claim, a good BCBA will see that it is probably due to the fact they are putting no demands on him, not following through and letting him do whatever he wants. I guarantee that is why you are getting the brunt of his behaviors at home. Because you are doing what should be done and following through and the lack of consistency on the district end would make any child on the spectrum infuriated.

Make sure his goals and objectives are measurable, have benchmarks, and are comprehensive. Also, if you disagree with any of the district evals. you can reject them and demand an indepdendent eval.

Remember this when writing a good IEP, (accurate) present levels drive goals, goals drive objectives and goals and objectives drive services and placement.

Amber DBTD said...

Where do I find this BCBA? How do I get an independent evaluation? What if the district tells me no?

Anonymous said...

Are you in NC? Who are the ABA providers in that state? I'll take a look.

Good advocates are difficult to find. A good advocate thoroughly understands, the law, autism, ABA, NET, pivotal response and VB type techniques, PECS, gross and fine motor skills/OT, PT, augmentive communication and so on.

If his IEP seems inapproriate call for an IEP immediately and tell them you want the goals and objectives changed. First it is best to figure out his present levels of performance under every domain....expressive language, receptive language, speech, articulation, social skills, play skills (both open ended and closed ended) ADL's (adaptive living skills), OT, PT, theory of mind/executive functioning, behavior domains. Also, for them to say he does not have behaviors in school is either A. a complete lie (which I don't doubt from the district) or B. he's not being taught or challenged at all if he comes home and has such severe behaviors. For example, one of the first programs I would run with him is the "come here" program (from one feet, three feet, across the rooom, between rooms, outside, and then in the community keeping very specific data and not moving on until each one is mastered.) I am wondering in school when they call him do they expect him to come immediately and sit and attend or do they let him wander and not follow through?

There are many, many good books and resources. Which ones have you read yet?

Anonymous said...

The Mariposa School may be a good resource to call. They are very nice there and may be able to point you in the direction of getting a BCBA for a good eval. both at home and at school.

Anonymous said...

You can also call the Lovaas Institute and see if they have an office or people near your area.

Amber DBTD said...

Sounds like I'd have to pay out of pocket. Jaymes is on Medicaid, and we just can't pay for anything right now. We're barely covering bills right now.

I have not been able to find a behavioralist yet, been looking for a long time. Believe it or not, we've even gone so far as to apply for Supernanny (LOL).

Anonymous said...

So frustrated for you! He would soar with great intervention. It's always a fight but keep on trying.
Does the district have a BCBA that they employee as a consultant? Not that I generally like district BCBA's (they usually just say whatever the district tells them to) but you could request that you want her on the Team. Also, at least have the Neuro. write very specific recommendations. (example - 30 hours per week 1:1 ABA, 14 hours per month supervision by a BCBA, etc.) Would he do that for you? Most good Neuros. will write very detailed recommendations if you ask them to.

Bottom line, if the child requires it, then the district has to fund it. It may be a fight but it's a fight that is won everyday.

Amber DBTD said...

What does BCBA stand for, exactly?