"Do what you gotta do"

"Do what you gotta do" is what she said to me over the phone. I know she didn't expect me to do really anything, I mean, I am "just a parent" and she is the almightly know-it-all, right.? Here is where the journey started and I know that as of this moment, this "woman" is regretting telling me to "do what you gotta do".


After the comment, I sent Ms. P an email that is posted below. After I sent that email, she called me and said "what do you want me to do?" I said, "take the diagnosis off" . She said she couldn't, that they had to take the entire evaluation into consideration. I said "the entire evaluation was done without my permission and you know what you and the rest did and you, as a parent, shouldn't be letting this happen." or something to that affect. In a very snotty tone she said "well, do what you gotta do." I did, I wrote directly to the top:

Here is what I wrote to the special education director of our school district. Of course, edited to keep names confidential.

Mr. (Special Education Director)

My name is Mrs. "mom" and I am the parent of Ryan. I have two issues regarding my son that I would like to bring to your attention. One is the evaluation that was done transitioning him from ECI to XXXXX ISD. The second, is our ARD meetings.

1. EVALUATION: My son was in ECI for 6 months with Mrs. T for his speech delay. He made great progress with her. A week before his exit evaluation from ECI, I met with Ms. M to go over all the testing that was going to be done on September 18th. I had been through this all before since my older son, Kyle was also in ECI and is now attending your CAPP program for his speech delay, so I was familiar with all that was being done. She gave me a copy of everything that I signed.

On September 18, the evaluation team consisted of Ms. P, Ms.F, Ms. S and Dr. L. We came in and Dr. L shoved a piece of paper in front of me to sign with no explanation of what she was going to be doing. Since I had been through all this process before, I signed without really reading, which was my fault, but I should of been told what was going on. I realized at the END of the evaluation that she was there to test him for Autism when she told me that he had PDD AFTER 30 MINUTES. I also didn't get a copy of the form that I signed at the evaluation. If Autism testing was going to be done, I feel that Ms. M should of informed me while we went over the testing that was going to be done the week before and also any one of the 4 ladies at the evaluation should of told me.

According to my Notice of Procedural Safeguards under Parent Consent, it states that consent is more than a signature. A consent indicates that:
---you were given all the relevant information in your native language. (I was not.)
---you understand and agree in writing to the activity (I did not understand that testing for autism was to be done and I did not agree to it.)
---you understand that your consent is voluntary and that it can be revoked at any time (I would have revoked that type of testing).

My rights as a parent were violated. If I had any concerns about him having some sort of an ASD, I wouldn't be going through the school district to do it.
Furthermore, it states that if I refuse to give consent for a particular activity, the school CANNOT use that refusal to withhold other services for your child. This has indeed happened. I was denied speech services unless I signed that he had autism as well after requesting that speech be started until I could get another opinion.

Ms. P can attest to the fact that I was not informed about this testing. She admitted this at our ARD meeting.

Here was the email that I sent to Ms. P before our ARD meeting that was held on October 9, 2007
Ms. P, After several attempts to contact you by phone, I am contacting you via email. In regards to Ryan's evaluation done on 9/18/2007, I did not authorize autism testing and need to have this testing and any conclusions from this autism testing EXCLUDED from the eligibility determination. Nowhere in the paperwork does it show that a CARS test was going to be performed and no one told me at the beginning that this was a possible test. If I had know, I would of revoked my permission. There was ample opportunity for Dr. M to inform me of this. (In the CARS test, his score was in the non-autistic range by the way.) In my opinion, a 30 minute observation in an unfamiliar setting for my 2.11 year old son is not enough time for a lifetime diagnosis of PDD-NOS OR any type of autism. A true PDD diagnosis includes hours of on and off observation and there was no basis to even test him, much less, in 30 minutes. It is extremely important that we get the appropriate services for my son, not a label that was determined inaccurately and in less than 30 minutes without my permission. I would like to sit down and discuss this with you and Ms. T from ECI before our ARD. Please let me know when it is convenient for you. Regards, Mrs. "Mom".

Ms. P and I did have a chance to talk before the ARD meeting and she told me that she could not exclude this testing but it was up to the ARD committee to discuss options.

2. ARD MEETINGS - October 9, 2007 and October 23, 2007 We went over the evaluation and was told that Ryan had two eligibilities - speech delay and NCEC - suspected autism. ECI Coordinator also attended this ARD meeting and totally disagreed with the PDD-NOS diagnosis. Again, this diagnosis was done in less than 30 minutes. Ms. T worked with him for 6 months. I refused to sign just to get services for my son. A non-consensus ARD was discussed to see if we could get him services for speech until I could get an independent evaluation done. I was told that that the "higher ups" would have to review it and we would reconvene after 10 days. We rescheduled the ARD. They asked if my phone number was current in case anyone needed to call me during this time. I also suggested that they talk with Ms. T from ECI. I never received any calls during the 10 days. I called the morning of the rescheduled ARD to see if a decision had been made and was told that my request was denied. At the ARD meeting, I got the feeling that no higher ups even looked at Ryan's file. Ms. B attended this 2nd ARD and had to be filled in on what was going on right there in the meeting. So now, my son is not receiving services unless I sign that he has PDD-NOS. Again, this can not possibly be determined in 30 minutes. Ms. B suggested that he be re-evaluated by the district again. I am not comfortable having this done again because I do not feel that the school is even trying to do what is best for my son at the present time. If they were, then he would be receiving services until I could get an independent evaluation.
According to the Procedural Safeguards, the school CANNOT use that refusal (the testing that I would of refused) to withhold other services for your child. Since he was eligible for Speech Impairment he should be receiving services for that since two eligibilities were stated. Again, this request was denied. I also have some other emails to Ms. P and she told me that she has forwarded these to you and Ms. B

I don't know if you have been informed with my case, but I would like to schedule a meeting with you to discuss this. Please contact me at your earliest convenience.

Sincerely, Mrs. "Mom"



I did call the school psychologist a week after the evaluation after our ECI caseworker suggested. The ECI woman (who I love) actually argued with her when I left the evaluation and said there was no way he had PDD-NOS. I didn't want to call her because she had such a high and mighty attitude. I called Ms. P to see what her extension was and she said she was hired as an outside consultant for the school. Well, holy hell, she is the director of an Autism center in the area. From what I understand, she diagnoses 99% of children coming into the system with some sort of an ASD. So, I called her..................she was actually very nice after I told her that I had no idea that she was there to test him for that. She said the school called her to come. Why on earth did the school NOT tell me the day (a week before the evaluation) that I went to go over all the testing? Shady indeed. I specifically asked her why she thought Ryan had PDD-NOS. She read her notes as follows:

• Didn't respond to his name
• Didn't greet Ms. T when she came in
• Didn't have much facial expressions

This was after 23 minutes of watching him across the room. The room was FULL of toys, books, obstacles (for motor skills). I told her that he always responds to his name, didn't greet Ms. T - so what? Facial expressions? Hello, you saw him for 23 minutes. She did tell me that the week before she had misdiagnosed a child when he was 3 and now at age 6 he has autism. Well, hell, that is not my fault she screwed up then. I said "do you think you are overdiagnosing to make sure that doesn't happen again?" The only thing she said was "you make a good point". Yeah, just like a psychologist, right? Remember, AFTER ONLY 23 MINUTES. Didn't even give him time to get comfortable. Whatever.

My meeting with the Special Education Director lasted an hour and a half. I was calm, cool, and collected. I did not go in there like a lunatic parent and it paid off. I had 2 binders with me, a copy of Wrightslaw and a copy of the evaluation. He was poised, understanding and I can see what he is the Special Ed Director. He said that he would "take care of it." Of course, he did say that he didn't want to go through a due process. Of course not, they would lose. At the end of the meeting he actually thanked me for being so prepared and so nice. Hell, I can't burn any bridges at this point.

The next day I received a call from the school stating that another ARD was scheduled to get Ryan into the communication class that I wanted him in. As far as I knew, that class was full already and the lady said "well, they are making room for him." Guess I was really influential in my meeting. It took me 3 months to get this all taken care but he got into the class in January, 2008. (This was the same class that Kyle was in for a year.) I also heard that the evaluation team got in a bit of trouble. I don't care what they think of me, they screwed up.

I learned to be an advocate for my child after joining The Natural Late Talkers Yahoo Group. This group of parents helped me get through my rough days and now I hope that I can return the favor and help others going through this.

The message they want to send out to parents is NOT avoiding evaluations like some people think but getting an unbiased evaluation done by an experienced professional. Yes, it brought me to Dr. Camarata and Mary Camarata and I made an appointment to see them this past March. The best decision and travel money we ever paid. I will write more about that in another post.

So THANK YOU Ms. P for making me "do what I gotta do". You won't be forgetting my name.

This happened to me for a reason. It was suppose to happen. The school at least will NOT be sneaking in the testing. I made sure of that when the SE director asked me for some input (yeah, believe that?)

I do feel that I am here to educate others that the school personnel are not the "know it all's " that they claim to be. They act like they want to do what is best for your child, but what they want to do is what is best for them and in our case, financially. I was told that they get more money if the autism box is checked. Lord help us. Seek out clinicians that know what they are doing and please, please, make sure it is not an evaluation that is 23 minutes.

Did I know about PDD-NOS before Ryan was diagnosed with it? Not really, but I do now. I joined some PDD message boards and thought, hmmm - doesn't sound like Ryan but I wanted to learn as much as I could. I actually privately emailed one of the moderators and asked her a few questions and she was very informative and very nice. We both decided that board was not for me.

Why did I think that Ryan didn't have it? I knew because my oldest son, Kyle was more language delayed than Ryan was at age 3 and he is now 5.5 and has progressed at a rapid pace and will be starting kindergarten in one week. Sure, he had some speech help in a communication class with a wonderful SLP (the reason I wanted Ryan in there with her) but I honestly think he just needed some time. My pediatrican was appauled as well with Ryan's evaluation and the first thing he said was "they have another agenda". So there.

I will be posting Ryan and Kyle's evaluations from the school and from the Camarata's soon. Stay tuned. In closing, please trust your motherly gut. You know your child best.

© Copyright 2008 "Do What You Gotta Do"