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...

I support Autism Twitter Day! Will you?

Parenting two children on the spectrum, I have felt like a klutz since my first push during labor! Since spawning my first kiddo over seven years ago, I have been on a journey of motherhood unlike any other.

Although there are no manuals that can teach any mom how to parent their special child, caring for a child with special needs - specifically, a child on the autism spectrum can be especially surreal. Every day, the needs change. From the time my children were babies I have tried to figure it all out.

Now, after endless hours of research covering a variety of syndromes and disorders, I have feared the possibility along with the reality while parsing the relative information from stacks and stacks of professional recommendations and diagnoses covering Parenting, Strong-Willed Children, Autism, Fragile X, Asperger's, PDD-NOS, ADHD, Bi-Polar Spectrum, Gifted, Sensory Integration, Sensory Disorder, etc. My husband and I have had to change our career paths and life styles and have had to learn to budget our time and money so that we won't go into debt and/or divorce over the countless recommended interventions and therapies from brushing, diets, balls, vests, blankets, swings, social games and groups, squeezy thingies, bouncy doo higgies and artsy fartsy fun. Some of these items have applied for our needs at some of the times, but all of this has been overwhelming, border line new-age-voo-doo to us to say the least!

Then, there are the teachers, family and friends and foes who tell us that there is nothing wrong with our children and that we need to just be better parents. At times, I am tricked and confused by their comments. For whatever their personal reasonings, I have had to learn to desperately grip on to that teeny tiny motherly instinct that has not yet faded away and I think I am the only one who truly knows my daughters and their core needs!

I have earned infinite invisible degrees and badges of honor as a mom to a seven- and two year old on the spectrum and God still has much more to teach me. I love my kids. And I want to help them as best as I can by understanding their needs and educating others in our family and community. I look forward to joining in on the discussions that will be shared on the inaugural Autism Twitter Day!

Can you join us?

Autism Twitter Day, Tuesday, December 16, three times throughout the day, 9:00 a.m., noon, and 8:00 p.m. PST. Prizes for young adults with autism or asperger syndrome will be given away during these twitter sessions!

Whether your immediate family has been impacted by autism or if you know someone who has, you are welcome to participate. There is never a day off for the mothers, fathers, siblings and friends who support a person with autism. Here is a chance to gain support, understanding and resources that can help you navigate your life!

Come and join in on the discussions. A variety of topics will be shared on how to best handle those curve balls that the spectrum disorder tosses in to your daily life ranging from:

family dynamics,
from the bus to the classroom,
behavior,
variety of therapies,
special diets,
social skills,
independent living,
self care and hygiene.
bullying,
IEPs,
respite,
books, toys, etc. that have helped your family.

This includes sharing links to your sites and blog posts.

Hope to see your avatar there! Sweet Tweeting! Visit Autism Family Adventures to learn more about the event and to RSVP today!

Autism Family Adventures: RSVP for Autism Twitter Day

IEP What good are you anyway?

It's not like the team of professionals even know how to help my daughter.

We were actually told that because she's not receiving services, she isn't eligible for an IEP.

She's not receiving services because last year, YOU didn't believe or accept her autism spectrum disorder diagnosis.

After five professional diagnoses to "prove" something is challenging my daughter, and a teacher along with the school's psychologist telling us that the only thing wrong with Savana is her mother who needs counseling and needs to stop sending her child to get tested so frequently, the committee finally agreed that my daughter did have Asbergers.

Now.

Now after she has gone a year without any services to help her, been bullied and misunderstood on the playground because of her social deficits. She has developed severe depression, at the age of 6.

We brought an IEP over from Illinois for Development Delays. This was before I had even heard the word Autism regarding my own daughter. She had minutes allotted for OT and Social Services. When we reviewed the IEP in new state, the committee laughed at the term Social Services, "What are Social Services? We don't even know what those are."

At yesterday's case conference, my husband and I told the committee that we weren't going to sign their recommendation and we were going to keep the IEP as is. They replied, "IEP? You don't have an IEP."

Well then. That explains everything, crystal clear and surreal like the Twighlight Zone.

IEP Rant and Reason

The reason you claim that my daughter is not eligible for IEP services at this time is because you don't understand her and her complex social needs. You don't want to validate the parent's view points or the professional assessments from three psychologists and two occupational therapists or the IEP we had prior to moving to this hillbilly rural town because if you do acknowledge my daughter's diagnoses, then you will have to step up and actually retrain your old fashioned minds to learn something new. Stop coasting and stop hiding behind state governed regulation clauses that give you the excuse to be ignorant and not face the facts. The facts that my daughter is special. That she will become someone important. That she has needs that go beyond ABC's and 123's. She is a first grader reading on a ninth grade level. Of course she is getting straight A+s! If she didn't she would go into an emotional shock. If she didn't perform and get along at school in front of her favorite teacher and peers, she would burst. She would burst into a hot lava fit of rage just like she does a many of days right before school and right after school. But hey! You say you aren't responsible for the child when she is outside the school doors.

More on my rant about this later. Daughter is home now.

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.

The Autism Filter: Part I

When I first heard the "A" word, I didn't quite understand it. I wasn't ready for it. I was still blind. From the time Sienna was a baby, I just thought I was a klutz of a mom. I just didn't have a motherly instinct and felt so much rejection from my first born.
The pictures below capture a typical struggle of me wanting to show affection to my daughter. These photos were taken on mother's day.

The day care teachers and directors first started to suggest to me that I get an assessment from a professional. They said that Sienna, "had trouble with transitions and was a little aggressive with care takers and her peers." She threw tantrums a lot, but I just thought we were still in the "terrible twos." She also didn't speak until the age of three and I blamed this on the two non-English speaking nannies that we had when she was an infant. More about the blame of the nannies for a later post...

So, from ages two until five, I started to focus in on what it meant for a toddler to have difficulties with transitions. I started to become more in tuned to the noises and the bright lights and the crowds that were igniting these tantrums. I found a book on the shelf at a Christian book store, "Out of Sync Child." As I read the jacket cover, tears swelled my eyes. I started reading the book with a highlighter and would read excerpts of how it related to us to my husband daily. We both agreed that Sienna was out of sync. But what now?

The school system at this time was so supportive. They spoon-fed me and held my hand. I will never forget the day I had to sign my first IEP that would give permission to let a bus pick up Sienna from the private preschool and take her to the half day of special services for her. It was a short bus. I used to make jokes about riding in a short bus. Now, the curly blonde little girl, the first child born in this generation on all sides of our family, the one who is so stunningly adorable even strangers stopped us in public to tell us she should be a model was now going to be riding the short bus.

One more year until she starts Kindergarten. She really hasn't started her school career yet I thought. I told myself, "No harm done... if these professionals can help her with her tantrums and transition difficulty, then she will be mainstreamed for Kindergarten when all the other kids in the neighborhood start and we can put all this behind us." Whew. And, that was that. Or was it?

More about how Autism changed our view and blurred our vision for our future in future posts...