Entering a New Chapter of Motherhood

Yesterday, as the school psychologist left my home after reviewing Sarah's assessment with me, I realized that I was entering into a new chapter of motherhood.

My youngest daughter, Sarah will be turning three in March and will be phasing out of the 0 - 3 program that is government funded and has been providing therapy in our home two times a week. When a child turns three, there is a transition process that takes place so that another government funded agency can give proper services and therapy for the child to prepare him or her for school. And, after several hours of testing spread out into several sessions throughout the past couple of weeks, the 'professionals' have reported that my daughter will not be eligible for any services.

With one side of my heart I am relieved! I am thankful to know that we no longer need to have our weekly schedule spent doing therapy. I am also grateful that my daughter tested 'Superior' in language and cognitive skills. I mean, I should be proud, right? However, my concerns are honed in that along with those high results, she tested borderline and very low in social and emotional development. She also struggles with sensory issues as reported by the Occupational Therapist. This report only reiterates my original concerns for my child as I have lived this chapter of parenting several years ago with my oldest daughter, now age seven. My seven year old has Aspergers Syndrome, although, we didn't know that at the time. In fact, we just are learning about it as I key this post in.

Asperger Syndrome is such a tricky disorder that has taxed me as a mother. It has changed my life in ways that I could have never imagined. It has given me a mix of challenges and blessings. And, as I am still learning parent strategies to get through each day and learning to restructure my dreams for my oldest child's future, I now am seeing that both my daughters may be walking in the similar paths.

Life is all about choices. We chose what we will believe, how we will live and who we will be. Although I am tempted to chose to be a victim, befuddled, judged and in daily grief, I chose another window to look out from. I admit that there are days when I do glance from the darkened viewpoint and I am overrun with tears and isolation. I do let myself have healthy pity parties from time to time, I mean after all, it's only fair! I am hoping that the pity parties will occur less and less as I grow into my new role as a mother to children on the autism spectrum.

And, as I watch the psychologist leave my home on a Tuesday morning in February, I am thankful that I am able to process and condense my thoughts long enough to realize what are my challenges. And, I come up with a new mantra as I enter into a new chapter of motherhood:

I will accept the quirks of my children and the ignorance of others and find healthy coping strategies while maintaining an eternal vision.

More about this mantra in future posts...

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.