Letting Go of the IEP

The case conference for Sienna is in five days.

I keep going back and forth on what my position will be during this conference. It was a year ago when we had our first case conference at Laketown Elementary. It was then that they had told me that the school's psychologist did not see anything in my daughter that would support our independent diagnoses and the previous school's IEP that we had brought along from Chicago. The IEP process in Chicago was so different than Laketown. In Chicago, the school system held my hand and partnered with our family. I safely trusted their opinions. Now, I am in a rural town. They are clueless about autism spectrum disorders. After digesting book after book and Googling the hell out of Autism, Asperger's, PDD-NOS, ADHD, Mood Disorders, Sensory Integration, Sensory Overload, Hyperlexia, Co-Morbidity, and the like, I am still a clueless parent when it comes to my own kids. I try to understand my rights as a parent, I try to remember conflict resolution, I try to realize my daughter's needs in the classroom. I am flying by the seat of my pants trying to parent my own children in the home, failing most of the time. It is impossible for me to educate and lead the school to help my daughter in the classroom, especially when they claim they don't see anything out of the ordinary.

The school's diagnosis stated that they didn't see anything that resembled autism. The psychologist suggested that I find counseling and parenting classes to help our conflict in the home. Sienna's Kindergarten teacher mentioned to me by email that she was so sad for Sienna. She suggested that Sienna was typical and the only thing wrong with her was that I had taken her to too many doctors for too many tests and that would result in a couple of sad days for her. She was referring the the week we had last spring when I couldn't get my five year old out of bed. She had no fever and no other illness that I could detect other than, dare I say it, depression. That saddens my heart to see my own daughter so limp that she isn't able to sit up to eat.

At our first case conference last fall, when they told me that nothing was wrong with my daughter, I was excited and more than ready to sign on the dotted line! "What? Nothing is wrong with Sienna?! Great!!! Coom-by-ya!" With pen in hand, I recalled a tip that I read on line about never agreeing or signing anything during an IEP meeting. Always take it home and sleep on it. That I did. And, but that night I had trouble sleeping. My youngest daughter was having a difficult night sleeping and whenever I would try to console her, I remembered what that counselor said about my parenting. I felt broken and nothing I did or didn't do could console my youngest. In fact, nothing I did or didn't do seemed right when I was trying to comfort Sienna all those sleepless nights during her infancy and toddler-hood.

The school seems to handle Sienna well. Sienna has been thriving since we have moved here. She gets in a high abilities program because she tested at the 99th percentile in reading and math. She has gotten 100s on her spelling tests. And, when asked, none of the recess aides or special ed or classroom teachers see anything out of the ordinary. They see a spunky, creative quirky styled little girl. And, isn't that what I want them to see?

Last year I spent so much energy fighting the case conference team. I turned my wheels in trying to convince them that something was wrong with her. I have decided that I don't want to do that any more. And, my therapist agrees so does my husband. On Monday, when we go in for our next case conference, they will most likely tell me again that Sienna doesn't need any services. That she is 'not eligible' for services. I think I will smile and simply say, "Her professional medical diagnoses, both privately submitted and the assessment acquired through the independent evaluation state that she has diagnoses that would allow services based on the IDEA. However, I agree that with all the intervention that we have been working on in the home in the past four years, Sienna is now thriving. We do have some goals for her that we would like your help with in the social arena for her and if I may consult with the teacher and counselor from time to time, I would appreciate that." And let it go. Let the school do what they need to.

Afterall, I have a two year old who stays home with me who is on the autism spectrum. I need to reserve my energy for her. I can't lead the school in helping them recognize the early signs of Asperger's. I used to tell myself that God called me to this town to help the other parents who couldn't help themselves win the fight with the school system in helping their children on the spectrum. But I can now hardly manage my own family let alone advocate for the entire town. In God I trust.

Good grief

You ever have an issue that keeps coming up over and over in your mind? It's like you can't have any peace or progress until you realize what it is that is at the heart of the problem, yet you aren't even sure what the problem is exactly.

Here is one of those nagging self talk scripts that I am trying to get my hands on... I think I have it figured out, but it is like that Sudoku puzzle that you know you could solve you just can't find the time, or the right pencil or even the Sudoku puzzle itself.

I've mentioned in previous posts perhaps that I have two daughters on the spectrum. My oldest, Sienna, first grader has been diagnosed with PDD-NOS with probable Asperger's. She also has mood disorder (bi-polar spectrum) and ADHD. I have been on a roller coaster with her since she was about 2 years old, feeling like a failure, like nothing I could do for her was working. She was so 'out-of-sync' and so when I found the book, "Out of Sync Child," by Carol Kranowitz a few years ago, something finally clicked with me. I started the long journey of trying to get services and diagnosis's, let alone just basic acceptance of my concerns from my own husband and family members. Finally, after three years I started getting more understanding from family members. It took a lot of tantrums at family events for people to realize that there was any merit in what I was saying about Sienna. No one wanted to believe that such a bright and blue-eyed blonde little girl had anything wrong with her. All along, my parenting skills and credibility as a mother were weakened through every step during this three year journey.

Then, after Sienna's daycare providers really encouraged me to take the matter more seriously, I finally went privately to get medical diagnoses. In the past 18 months, we have had five professional diagnoses all pretty consistent with one another: Sensory Integration, PDD-NOS, Probable Asperger's, Mood Disorders, Bi-Polar and ADHD. In addition, yet in opposition to these medical opinions, the school's psychologist has observed, assessing Sienna at the school and discovered that Sienna doesn't show any problems at all. In fact, the school professionals claim that she is a bright and cheerful girl that perhaps "her mother is in need of counseling and parenting classes."

And, here we are a year later, and I realize, I do need therapy and parenting classes, ever since the school's assessment in fact!

Every day, I fight with my thoughts and feeling about my daughter being on the spectrum. Is she? Most of the time she is fine. We've learned to adjust. We don't do any thing that will be unpredictable or pressure her socially. So, I can't tell. I am going nuts trying to figure out if something is wrong with my daughter. If so, what exactly. And, once it is determined what, then, how will I help her?

I realize that I am thick in denial. I am also so angry. I have become hardened.

And then, a light bulb went on! It was an ah-ha moment yesterday while we took a day trip by train to Chicago. Sienna was not in her normal element. And, when she isn't in her element, her quirks are more pronounced. She acts strange, says weird things, has odd gestures. She doesn't even walk normal. When she was younger, she would act like a dog as a coping mechanism. Now, she acts like a baby to cope in difficult situations for her. She talks like a baby, wants to ride in the stroller and cuddle, just like a baby. I even made a new age appropriate 'blankie' for her so she could have her blankie in times like these. Frankly, I allow it because when she was a baby, she didn't really sit still in a stroller and didn't cuddle or talk much.

I found myself growing so angry during the train ride. I was so irritable with her. I was so mad at her for acting like this. I was mad that we couldn't do any family fun activities any more. I feel so judged by strangers everywhere we go. Most of all, I was disgusted at myself.

Why do I have to be so superficial? I have been a born again Christian for about 13 years now. I was such a strong follower before having children. I was so close to God, my heart was tender for Him. Now, I am so hardened. I don't even feel comfortable going to church, partly because our children on the spectrum have so many challenges in a church setting, but also because of the condition of my heart. I am starting to cope in unhealthy ways myself. I am drawn to cocktails to relax me and other social subtleties that are not Christian-like.

And I really do want to be that caring, loving Christian woman that I once was. I don't want to be cursing at God for giving me children who are so difficult. Feeling so inadequate for this feat, I let out a yelp of a prayer and I heard God telling me that I was in His Hands. I was just going through the valley of grief. I still am in denial. I am still in the anger phases. It is difficult to have a clear journey of grief with raising children with special needs like what Sienna has because every day is different and I will not know what challenges we will face until we are face to face with each challenge.

I have to trust God even more in the daily crises of raising my kids. More than the typical family would. And, that is a blessing. At least that is how I am seeing it in this light bulb moment!