Hey Mom, said Jacob. You want to know what’s in China that’s really great?
I could see where this was leading. Sure, Buddy. What great thing is in China?
The Great Wall of China!
How do you know about the Great Wall of China?
I make it all the time in the block corner at school.
But who told you about the Great Wall of China?
No one. I told myself. (duh)
My husband and I attended the Kindergarten parent/teacher conference this past week for Jacob. Is it just me, or do you feel a certain amount of angst going into those meetings, like you are the one being evaluated? We were pleased to learn that Jacob has exceeded academic expectation and is now testing at a first-grade level. While this makes me extremely happy and proud, I feel elated only because I once questioned his ability to learn in a structured environment. We’ve always known Jacob is a smart fellow, but we wondered if any teacher would be able to deal with his special qualities. **Disclaimer: There is ongoing debate and evaluations to determine if Jacob falls on the autism spectrum, namely Asperger’s Syndrome, and the extent of his sensory issues.**
Our journey to find out what is “wrong” with Jacob began when he was not quite two. I’m not one to blame vaccines for Jacob’s issues, but I saw a remarkable change in his behavior a few days after his 15-month immunizations. I’ve never voiced this to anyone, namely because I don’t want to be one of those parents. Ultimately, I believe that vaccinations are good.
Over the years, we’ve been shuffled between various medical professionals and specialists to help classify and treat Jacob accordingly. The only problem is, Jacob doesn’t fit neatly into any one category, which only makes diagnosing him all the more difficult. The only reason why I want a formal diagnoses at all is that receiving any sort of treatment is easier when there is a concrete diagnoses. If you don’t have a diagnoses, then every specialist with whom you meet wants to perform his or her own tests to determine what might be wrong. In other words, these specialists spend so much time filling out paperwork and scheduling appointments to confer with each other about the proper course of action, nothing ever moves forward.
Nothing.Gets.Done.
Jacob was first evaluated through the school district when he was still in preschool. Those evaluations prompted meetings with a child psychologist which lead to meetings with a family therapist which took us back to the pediatrician.
He’s not eating at school. He’s having problems with fine-motor skills.
My pediatrician suggested contacting the Chair of the Special Education Department to request a meeting to discuss the possibility of going through another series of evaluations. I contacted the appropriate person in September 2007. In January 2008, we finally got our meeting.
Prior to that meeting, two specialists had been pulling Jacob from class to test and observe him. They determined that there was need for additional, more in-depth testing and assured me they would get started right away.
You should be stunned, as was I, to learn that on March 7, 2008, six months after my initial inquiry to the Chair of the Special Education Department, nothing has been accomplished. Why? They filled out the wrong paperwork.
They filled out the wrong fucking paperwork, and now everything has stalled while we wait for the school to get its head out of its ass and do something already. Can you tell I’m angry?
I learned of this from Jacob’s teacher, who was reluctant to tell me at all. He knew how I’d react. In all respects, I am a quiet person. But like any parent, mothers especially, I can become testy where my child’s best interests are concerned.
I am livid. I am seething with anger.
And what’s more, these evaluations do not ensure that Jacob will receive any aid at all. After the evaluations are complete, the Board of Special Education will meet to deliberate if Jacob might benefit from in-school assistance. It’s all up to them, regardless of how I feel or what I think.
And now? Jacob’s been picking on his classmates. Nice, huh? It’s nothing malicious, mind you; he just likes to test his limits. He’s never bad or mean; he just likes to burp in your ear continuously or pick at your shirt or swipe your crayons when you’re not looking or kick you under the desk. All this just to get a rise.
He wasn’t doing this at the beginning of the year. Personally, I think he is bored. Suffice it to say, he now has a behavior chart in class. Ever the perfectionist, Jacob takes his chart seriously. His teacher called the other day to talk about the positive changes he’s seen in Jacob’s behavior. He’s now working out his problems instead of resolving to tears or tantrums. He’s learning to share instead of swipe items with complete disregard to other kids’ feelings.
But seriously, that’s only a small consolation for how inept these so-called professionals, the people in whom I entrust my son’s education, really are.
All I can ask is, Seriously. WTF?

10 comments
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March 13, 2008 at 6:55 am
Debi
Oh Melissa, I’m so sorry! There just aren’t words to describe that kind of feeling of helplessness, are there? Despite all your best efforts to fight for what your child needs, nothing happens. I really, truly am so sorry!
(Annie’s home for much the same–though different–reasons…we got sick to death of all the promises made by the school that were never followed through on.)
March 13, 2008 at 8:34 am
gary
I am a retired special ed teacher, Lis, and you have the right to due process. If you don’t like what the district does or says to you, you have the right to appeal and push for more—surprised, though, that enlightened Ithaca would drag its feet on this or make mistakes.
Of course, if they are not giving you the help you want, then you have to find it yourself to get them moving.
March 13, 2008 at 10:43 am
L the D
Isn’t it amazing how the so-called professionals seem to have no clue, despite all the training and education they receive? I’m amazed, every day, at how some teachers never seem to have it together enough to take effective control of a classroom and impart wisdom on their charges. I couldn’t even imagine trying to deal with that AND the special education program. I hope things get resolved soon!
March 13, 2008 at 1:32 pm
Sonya
Melissa, (((hugs)))! I’ve learned recently. The only in depth testing is the one you do through your own doctor’s referral and using your own health insurance and not through the board of ed because the board of ed will never give you an in depth enough test and will never do formal diagnosis for Jacob. You know I am on this similar boat with you. I’ve been researching quite a bit and I don’t think my insurance will cover it all! Once the medical/psychological testing are done. They can be sure if Jacob is Asperger or “on the spectrum”. With the “formal diagnosis, the board of ed will have to give Jacob help! We are still holding out on doing the tests and just let our little boy grow a little more because things have improve for the past 2 months. But we might have to come to really doing the formal testing if we think our little guy needs more help. My heart goes out to you and to all the families who are going through the same thing. I recently have become one of the moms who might skip the MMR shot until the baby’s much older. Take good care! We’ll talk soon. I’m glad Jacob is doing so well academically in school! You should be so proud of this little guy.
March 13, 2008 at 1:32 pm
Tiffany
I am sorry to hear that you are still dealing with school district over this and they filed the wrong paper work and who knows how long it will take to get it fixed. I don’t have a problem with vaccations as well but as Lily is getting ready to get her first set it is making me wonder. She is so wonderful I would hate to get her vaccated and have something awful happen - it does make me think.
March 13, 2008 at 2:25 pm
Robin
I’m so angry for you. Angry that the school fucked up so badly, but even more angry that you have to fight so hard to get an evaluation in the first place. For all that is wrong with Israel’s socialist-style medical system, this is one of the things that has gone very right, at least for us, at least for now. (Knocking wood three times, spitting, throwing salt over my shoulder, etc. I do NOT want to piss off the fates on this one…
March 13, 2008 at 6:39 pm
kristi
I can’t imagine how frustrating it must be to have to rely on inept professionals to help your child. Jacob obviously needs their help, and they have repeatedly dropped the ball. That said, he is SO lucky to have such a vigilant, involved advocate in his mother. So many children don’t have that, so he’s a pretty lucky boy.
March 13, 2008 at 11:20 pm
Kathleen
Around here the school system is basically useless at any sort of testing or reporting of testing. Any results we’ve recieved have been the result of private testing. From my experience you can’t rely on the schools for anything. Although once you have some sort of diagnosis it opens many doors as far as extra funding and teachers aides.
Good luck to you Melissa, I know how frustrating it is. I also get how pissed you are about the whole thing. Been there too!
xoxo
K
March 14, 2008 at 1:35 pm
Jen
Ugh…I am getting more and more anxious to start the whole school system thing. Sending hugs your way.
March 17, 2008 at 3:27 pm
Holding It Together
I am right there with you and sorry to say that this will just be the first battle you fight as you go down this road. Check out wrightslaw.com for the information you need to make things happen with the school system (the squeaky wheel gets the grease), and autism.com for the research that is being done on both triggers and treatments.
If you are interested, you can also look at http://www.asdhope.org for a parent information booklet (some specific to Pennsylvania, but a Top 10 list and a book list that are pretty general). The best two things for our little guy’s sensory issues were the GFCF diet and Tomatis-based auditory integration therapy, neither of which require the school to be involved.
That’s great about the behavior chart - it probably works so well because it is VISUAL and CONCRETE. I know it sucks that the burden ultimately falls on you, but it is also true that the best indicator of future success for kids on the spectrum is a determined parent.