My Guilt

This is very difficult for me to write about. I can spend all day talking about Dominic and his struggles. Opening up about myself is very different. However, I think at this point it is necessary. This past Wednesday Dominic and I visited his psychiatrist, Dr. Rubin. Dominic has been very irritable this past week, snapping at every question, and screaming or making noises when I try to speak to him. Dr. Rubin thought the Adderral might be agitating him, so we stopped it. He is currently taking just Abilify, but we upped the dose a bit. On Friday we visited his psychologist, Dr. Beth. I asked her how long it takes for the Adderral to get out of Dominic's system, because he was still incredibly irritated. When she said it's a daily drug and it's long gone out of his system, I started crying. If it's not the medicine, and his behavior is ok at Grandma's house, and doing good at school, then what's left? It has to be me, right? I'm the one who has the most problems with Dominic, so I must be doing something wrong.

Dr. Beth pulled me out of the room and talked to me about "situational depression". She suggested I see a counselor and/or consider medication. She said if I don't take care of myself then I can't help Dominic. A lot of the things she has suggested we try haven't worked because there is too much negativity in the house. When she said this I realized it was true. I've been sluggish, tired all the time (even more so than normal considering my job), haven't been cleaning the house or car like I used to, and I've had a general sense of hopelessness. I feel selfish being depressed because that takes time away from him.

Now that I think about it, I can trace these problems back to May, when Dominic was diagnosed. I immediately felt weighed down with guilt. My family has a history of mental problems, such as bi-polar, depression, ADHD and ADD. I brought a child into this world knowing my family history but completely ignorant of the consequences. When Dominic was a young child, I knew something was off. I knew he wasn't like other kids, but I didn't know what the issue could be and I wanted to pretend he was eccentric. If I had brought him in sooner could he have been helped enough for him not to have problems in school? Did I hurt him by waiting until I was told by an outside source that there was something wrong with him?

We have been working with Dominic on behavioral therapy and medication for four months. It's very difficult to determine whether or not there is improvement in his behavior. We've had quite a few good days, where he listens, does what he's told, and doesn't hit me. But is he just having a good day? Or is it the medication/therapy finally working? When he has nothing but bad days for a few weeks, did the medicine stop working, or is he just having some bad days? There is so much confusion and very little answers.

I want so many things for Dominic. I appreciate his many skills, and his strengths, but I think I focus too much on what needs to be "fixed".  I think I will see a counselor. I wish that I could find someone that has experience with families with Autistic children. There are support groups out there, but none close and the times they meet are not workable for us. I want to be able to handle all of this by myself. I want to be the strong Mom, who helps her child and does it without complaints. Realizing that no one like that exists is a hard pill to swallow.

IEP...

I sent a letter to the school on August 15th, requesting my son be evaluated for an IEP. I still haven't received a call to set up the initial meeting! This meeting is just to give Dominic's history and give permission to start the testing. I don't understand why it's taking them so long!

One of my co-workers, Michelle, has a mother who teaches classes on IEP's, parent's right and the law regarding it all. Michelle told her mother what I've been going thru and she's very upset! Apparently once I notified them of Dominic's diagnoses, even over the phone, they have 30 days to start evaluating AND  they should have started (and maybe even finished) the process over the summer!! The school's psychologist told me last May that it was too late in the school year to start the process, that it couldn't be done over the summer and it'd be fine to start at the beginning of the new school year. Turns out she went on maternity leave over the summer. Seems a bit suspicious, doesn't it??

I will be calling the new psychologist tomorrow. The problem is that I sleep until 3:30 pm because I work 3rd shift. Hopefully she is still answering her phone after 4 pm, since I need to get Dominic from the bus stop just before that time first. It really upsets me that they are pushing this back and don't seem concerned about helping Dominic. According to my co-worker I can contact the district because the school is not following the law. I'm not a person that likes confrontation, but I'm about ready to take it on anyway.

Wish me luck!

 UPDATE: The school counselor called me today and set up the initial IEP meeting!!! It's set for next Wednesday at 3:45 pm. Finally!!

First Grade!

Dominic started First Grade this week.When he got off the bus on the first day, he was all smiles and proudly told me that he didn't get in trouble at all! He didn't have any problems taking his medicine at school and he got to sit next to his (new) best friend Nathan. They weren't even disruptive or talkative all day! Dominic wants to have friends so badly, but he doesn't know how to interact with other people, and often loses friends within a day or two. Here's hoping this friendship lasts longer and is more fulfilling for Dominic.

I was so nervous for him to start school again. Last year was a bad year. Before school started Dominic was so excited to ride the big yellow bus, hang out with friends, and go to school. By the end of the year he was faking being sick, and begging me to let him stay home, and begging me to drive him to school so he didn't have to sit in the back of the bus! I am still nervous about this year. Dominic is supposed to have an IEP set up, but the school is procrastinating on it. Because he started on medication over the summer, they want to wait and evaluate him to see if he still "needs" the IEP.

We saw Dominic's psychiatrist yesterday, Dr Rubin. Dominic has been clearing his throat incessantly and blinking his eyes a lot. Dr Rubin recognized it as a vocal and facial tick. So we took him off the Risperidone and switched him to Abilify. I thought that was for depression, but apparently that is a new use. It's been used for years for ADHD, schizophrenia and bi polar disorder.  I'm starting to lose count of how many different medications/dosages we've tried so far. And the journey has only begun.


I spoke to Dr Rubin about the school waiting on the IEP. He wrote a letter saying that Dominic is in treatment for Asperger's and ADHD and he believed an IEP would greatly help him in school. I tasked Dominic with delivering the letter to the principal and he performed beautifully! I received a call from the school special education teacher who actually took the time to explain the process to me. Apparently, I need to write a letter to the school requesting a psychological evaluation. We will have a meeting where I give them permission to test him, and provide his background history. The testing can take up to a month to complete! They will be doing several tests, including an IQ test. This is to see if there is a large discrepancy between his academic performance and his IQ.

After the testing we have another meeting where the results are given. There may be a 3rd meeting to actually go over the IEP. The special ed teacher will write a draft and send it home about 48 hours before the 3rd meeting so I can review it and make changes/suggestions. I'm concerned because Dominic performs very well academically. He completes his work rather quickly, then he's bored and interrupts other students! I'm not sure if they are going to just set up a behavioral plan or do an actual IEP. Either way there are quite a few things I would like done for Dominic and I'm going to get my way eventually!


Here is an example of an IEP for a student with Aspergers:

http://www.smelena.com/index.php?option=com_content&view=article&id=6:daniels-ieps&catid=2:ieps&Itemid=5