Hey all.... I just wanted to drop a quick note. I went to the K&F msg board that I was a member of, but wasn't allowed in (probably my recent loss of a hat is what blocked me from going there....)

I just wanted to let everyone know that we are still alive. As I said a few months ago, things have been hectic here with Derryk and his school "antics".... things keep going on a downward spiral.... (as far as the SCHOOL is concerned, anyway).

Anyway, long story short, and after many "major" episodes at school (including suspensions for behaviors).... we are still spiraling downward.

He is on a stronger Med now, and the bottom line is that his Therapist and Psychologist have determined that Derryk is Aspergers.

The school is fighting us tooth and nail, and we are at a total loss as to what to do.

Anyway.... Not trying to burden anyone with our problems... I just wanted to check in and let you all know that we are alive and kicking...

I'm SOOOOO SORRY that I haven't been as active as I was before. (and I have two reviews to write about mouth pre-wash and wash that I haven't had the time to type out... but I promise that they're in my head, and as soon as I get a moment, I'll type them.... I PROMISE!!!)

=(
Danielle

I think we can all understand that family comes first and there's only so much you can do. You'll be welcome when ever you return, even if it's just a little.

Carrie

Hey Carrie....

Thanks.... I haven't had time to write a lot lately, but It's good to know that there's folks out there "rooting" for me!

=)

Danielle

Hi Susan,

Thanks for the support. It's been a long "April vacation" (school vacation... we didn't go anywhere...), but at least I didn't have to spend a lot of time at the principals office this week... LOL.

But, we did spend time at the therapists and psychologists. After more evaluations they've determined that his is NOT Aspergers. There are several "certain" criteria that he doesn't meet, even though he fits an overwhelming majority of the traits and behaviors.

They are now leaning toward NVLD (or NLD as some call it) which is Nonverbal Learning Disorder. The reason for this is that NVLD actually "mimics" Aspergers, having a great number of the same behavioral and learning issues.

This also goes along with his previous diagnosis', which were G.A.D. and A.D.D., because NVLD children often have huge anxiety issues and A.D.D. (or ADHD) characteristics.

He is scheduled for MORE testing soon, Neuropsychological testing, which will help to narrow it down and determine if this is in fact the case.

Anyway.... I'll keep you posted.

Thanks for understanding!
=)
Danielle

Danielle,

Sorry I just found this.. I've been dealing with school cr@p this past month or so also. I wanted to let you know that my email box is open if you have questions about Aspergers or NVLD. My son doesn't have that Dx but he is very close to that PDD-NOS/hyperlexia. Anyways, I'm here if you need anything, even just to vent.

~MT

Hey MT,

Thank you so much. It's nice to know that there are those (like yourself) out there willing to lend an ear and a hand.

We STILL don't have Derryk's diagnosis back yet, because the School Department financed the testing, they ALONE can have contact with the doctor, and they ALONE will get his diagnosis/results.

Mind you, I'd scheduled to have the Neuropsych testing done privately, but was then advised by the school system that if they "didn't like" the results of the private testing that they'd have it done themselves. So I decided to have the school do it first [hey, if they want to pay for it, let them!! And if it comes out accurately, it will save me some $$$] but if it comes out as bull-cr@p, then I'll go ahead and have the testing done myself. (it wasn't a "school employee" that did the testing, they actually OUT-SOURCED it, paying a "real" Neuropsychologist to do the test)

I don't agree with the them getting the results first, after all, I'm the parent and I should be first to know... but anyway... my hands are tied.

But, I did research "parent/student rights" and found out that under 603 CMR 23:07 (Massachusetts Law, I believe), that I'm entitled to full and complete copies of the documents submitted by the doctor, upon my request.

I've sent that letter (with the chapter and verse of the law quoted) requesting copies... and I'm waiting for their response.

Derryk's current therapists/psychologist believes him to be either Aspergers or NVLD and ADHD.

The funny thing is (ironic funny, not humerous funny) that I've recently read a book written by a mom (who is the parent of an NLD [NVLD] son, but has also become an occupational therapist in the meantime)... she wrote the book from a "mom's perspective". I could have EASILY crossed out her son's name and substituted Derryk's name and it was a PERFECT match!!

I was FLOORED when she wrote that kids with NLD [NVLD] are often FIRST diagnosed with Anxiety Disorders and ADHD (because kids with NLD have VERY high anxiety).... go figure, Derryk was first diagnosed with G.A.D. (Generalized Anxiety Disorder) and ADHD.

She also talked about teacher/principal reactions toward her and her husband, asking things like "is there anything going on at home", "are you and your husband having difficulty", "are there any major changes going on in the house".

I've heard ALL these things. Funny, after the most recent thing that happened (that got Derryk suspended... it was a "flight or fight" situation, he couldn't "comprehend" the situation and just needed to "get away") the school officials said to me: "You know, Derryk has been so good lately, this outburst is out of the usual for him, is there anything different or any changes happening at home?"

I told them NO.. there was NOTHING different happening at home.

Funny... I found out the next day (from other teachers and parents) that the ASSISTANT TEACHER that had been placed in the classroom was REMOVED the day before Derryk had his "incident".

HELLO PEOPLE.. the "new and different change" WASN'T at home, it was AT SCHOOL!! How quick they are to BLAME THE PARENTS!

Uggghhh.. Okay, I'm done ranting. Sorry!

Again, thank you SO much for your support. I'll let you know more as we progress.

=)
Danielle

p.s.I probably should have taken this to private email, but maybe it will bring some light to others who are having problems with their school systems and their kid's disabilities.

Oh... I wanted to add.... about the diagnosis...

I'm a little concerned that if Derryk does get diagnosed with NLD [NVLD], that it won't "fit" the State's guidelines for an IEP or Services. If he's diagnosed with Asperbergers, that won't be a problem, but NLD MIGHT be....

However, I'm hoping that with the IDEA 2004 Act (Federal Law, proposed in 2004 and PASSED in 2006), and the addition of "Specific Learning Disability" that NLD will fall under PDD-NOS or under the "Specific Learning Disorders" that was added with IDEA 2004.

Then.... I may have to deal with a totally different diagnosis (like ODD, CD, OCD, Emotional Disorder, any other LD). .. and pray that that is covered under "Specific Learning Disorder".... But we'll cross that bridge when we get there.

Anyway,,,, sorry, I wanted to add. I was laying in bed, trying to think, and of course I couldn't sleep because my brain wasn't "done" thinking!! LOL.

Again.... thank you (all of you) for listening and for your support.

=)
Danielle

Hi, have you checked the boy's diet? Hydrogenated oil, or trans fat, in the ingredients can cause children to have cognitive problems. This stuff is everywhere. If you go through your refrigerator and cupboard you may find it in things like margarine, ice cream, treats, cookies, crackers, bake mixes, frozen hash browns, and many others. Not to mention trips to the restaurant.

Take a look at this study via the link and see what hydrogenated oil did to rats' brains:

http://www.bakeryandsnacks.com/news/ng.asp?id=55845-trans-fats-may

The school cafeteria is probably feeding it to your child as well. You can show the school this recent statement by the American Public Health Association and ask them what they are doing to comply with its sweeping call to remove trans fat from cafeterias.

http://www.apha.org/advocacy/policy/policysearch/default.htm?id=1366

I hope you are successful in your struggle. You may end up helping other parents in the process.

In reading some of your other posts I noticed some red flags that might have something to do with your child’s behavior problem. Among his favorite foods you mentioned swordfish, which like all big fish is a potential source of mercury. You have also been microwaving food, which can hydrogenate the oils present in the food. Not only that, but microwaving in plastic containers can expose you and your family to Bisphenol A, or BPA, which can alter the body’s hormonal system and hence affect behavior. There is a must-read article in the May 2008 issue of DISCOVER magazine, entitled ‘Plastic People of the Universe’, on p. 46. It discusses how the chemicals in plastics can enter the human body and cause profound changes. All of these factors can affect the brain.

There is testing for all of these substances in the body. You may get a quizzical look from your pediatrician when you ask him or her to test your child for the presence of trans fatty acids, but researchers have been doing it, so it should be possible in a clinical setting as well.