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  • Stacey C.

She's too not needy for services... It makes perfect sense if you don't think about it.

Do you know that song in the Rudolph the Red-nose Reindeer movie? The one that the elf, Herby, the wanna be dentist sings? "Why am I such a misfit, I am not just a nit-wit..." Well, that song has been playing through my head for the past few weeks and today it seems to be on a repeat track. I hear it over and over and over again, like some kind of negative self-talk jingle.

Why is that song in my head, you may be asking? It started a few weeks ago - actually it was probably last year around this time as we were deciding where our Tornado was going to go to school in the fall. Officially, she was eligible to start Kindergarten and the public schools seemed excited to have her. Lance and I went in to that first IEP meeting armed with recent letters and chart notes from her Occupational Therapist, Psychiatrist, and the University of Washington team of doctors who first diagnosed her with static encephalopathy, sentinel physical findings, alcohol exposed, (which are a bunch of big words that means she was prenatally exposed to alcohol and has permanent or unchanging brain damage with significant physical anomalies). The letters explained her multiple diagnoses and outlined the types of accommodations she would need. We were standing tall with confidence that the schools would give her the support she would need to be a successful student who was eager to learn.

Unfortunately, we left with our heads hung low and tears in our eyes after they told us she would not be getting any services until she proved she needed them (in other words, until she failed). This was not acceptable to Lance and I and after many days of thoughtful discussion and lost sleep, we decided to keep her out of Kindergarten for another year and enroll her in Pre-K at First Christian Pre-Primary. It proved to be the best decision we could've made for her at that time and this school year she has thrived! She literally cheers when she knows its a school day!

Let's fast forward to today...Today I received a phone call from the Principal of a private Christian school where we applied to have Tiva attend. Lance and I thought that the smaller class sizes, half day Kindergarten and teacher to student ratio would be ideal for her needs. I met with the Principal in person last week and explained her needs and included this letter, which Tiva had me read to her 3 times and approved it with a smile and nod saying, "Yep, pictures help. That's good!":

Tiva is a delightful and charming child. She lives in the moment and is super busy and athletic. We adopted her from Foster Care when she was 2, but have had her in our care since she was 4 weeks old. She knows she was adopted, but does not fully understand what that means and gets confused when other people don’t have a different birth mom. She has been diagnosed with Fetal Alcohol Spectrum Disorder (an invisible disability that affects the brain with symptoms presenting themselves most times as behaviors and executive functioning problems). She also has a variety of other diagnoses including ADHD and Sensory Processing Disorder. She needs structure and needs to be told ahead of time about changes to the routine. She needs clear and simple direction (using few words is best – pictures sometimes help). She is a little slow in processing and sometimes she can be perceived as being shy. She is not shy, but will observe others until she feels she can be successful in following along and doing what is asked of her. She learns best one on one and is a visual and kinesthetic learner. She is often one or two steps behind, but tries very hard, is quite determined and refuses to quit. Once she gets going, she often has trouble transitioning, especially if she has not completed the task or job given to her. Because of this, it is best to give her a smaller project that she can finish within the allowable time. Sometimes, when she is overwhelmed, she is easily distracted by things she shouldn’t be doing, especially if she is not feeling competent in being able to complete the task assigned to her. She struggles with some sensory issues (especially with bright lights or lots of chaotic activity and noise) - she seems to see and hear everything going on around her.

Tiva has no stranger danger, loves to run and if she is not being engaged in a group, she will find something else to do or somewhere else to go. She does not seem to always make the connection of cause and effect and often does not understand consequences. She can repeat the rules, but that does not necessarily mean she understands them. She is a concrete thinker. She can be impulsive. She has on days and off days and can excel in a subject one day and it may be totally foreign to her the next. Please don’t think that she is just not trying on the “off” days.

She is fun and FULL of energy and wants to learn and do the right thing. Heavy work helps to keep her regulated. Even with her struggles, she is sweet and so much fun. She has some quirks that you will notice throughout the year. She likes to make believe that she is an animal or princess (or whatever) – especially on off days. She also is quite specific sometimes about her wardrobe and we will try our hardest to keep it from being too distracting.

While academics are important, we feel that in these formative years of learning, social skills are far more important, especially for Tiva, who has a difficult time reading social cues and needs lots of practice in social situations. I hope you enjoy her in your class as much as we enjoy her at home. Please call us at any time with any questions. 😊 We are so excited for Kindergarten!

After the Principal read this letter, he asked me who wrote it. I told him that I did. He asked who gave me the ideas for the accommodations in the letter and I repeated that I did - I wrote it. He was puzzled and said, "Well, It looks like a professional observed her and wrote these accommodations." I responded that I observe her every day and know her needs and that I am kind of a professional. He seemed satisfied with that and complimented me on the well written letter. When I left that meeting last week he said he was going to meet with the teacher and her full time assistant and they would get back to me.

Today was the day he got back to me. The results of our phone conversation caught me a little off guard when he told me that he didn't think our daughter would be a good fit in his school. I suppose I should mention that the above letter is the same letter I sent along with the chart notes for our IEP meeting last year. Last year, for public school I had more documentation of her needs. This year for private school I only had the letter. Last year the public school said they didn't have enough evidence that she needed extra help and we were told we'd need to wait until she proved she needed something. This year the private school said her needs were too great and she'd be better to attend public school where she could get the services she needs. Wait... What? The whole thing makes my head spin. The principal ended our conversation by congratulating me for being such a great advocate and by being honest about her needs. His kind words were intended to help me feel better and help soften the blow of once again being denied. I thanked him, hung up the phone and snickered as that dumb mis-fit song started playing in my head again.

So, here we are back to the public school dilemma. I have a preliminary IEP meeting scheduled AGAIN. I had to be persistent to get them agree to it since we just had one last year which was denied. They don't think we need another meeting. They don't want to give her services. They told me just that (they put a spin on their words, but essentially that it what they said). I won't take no for an answer. I won't back down. I won't let our daughter fail in Kindergarten.

Both Lance and I have done research on homeschooling, you know, just to keep our options open. If it comes to that, I'd like to get her in a co-op to have her with other children for the social aspect. My mind, so fresh from rejection, pictures a meeting with the home-school parents as they tell me what a great job I am doing, but that she would really do better if she wasn't in their group. In my mind, I'd turn around with my head hung low humming the dang mis-fit song.

It's not going to happen like that though. Advocating is hard work, but thankfully I've got a good work ethic. So, Heigh-Ho, Heigh-Ho, it's off to work we go!

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