My daughter was diagnosed with 17th Chromosome Duplication, or 17Q12, when she was barely four years old. As her parents, we did not recognize the symptoms right away.
- repetitive action
- arm and leg flailing/stimming
- learned responses
- repetitive speech (she would repeat what she heard, rather than attempting to talk)
Soon, our daughter graduated pre-k and moved onto Kindergarten. This is when the beginning of our Hell started. We enrolled her in a private Christian school that will remain nameless. Neither of us wanted her in public school because of common core, FCATs, and many other factors. So about a month into the new school, we started receiving phone calls.
- Non-Stop crying
- Not following directions
I received a call one day that went like this. "Mrs Morgan, your daughter will NOT follow directions! It is carpet time and we are supposed to read the bible! She will NOT follow my direction and insists on coloring!"
So to this, I laughed into the phone, yes, I laughed, and said, "Then let her color! She's four years old. What do you think she wants to do if you yell at her to do it? Leave her alone and let her color. She will listen to you talk but don't force her to sit on the carpet."
Our conversation did not end there, nor did the calls. Almost every day we were instructed to come pick her up for reasons X, Y, or Z. All of them were her fault, not the teachers.
One of the days I went to pick her up, no one was in the class room and the light was off. I heard a sound from the bathroom in the class room and waited. My daughter came out. Did I mention the class room was empty? Furious, I asked her, "Where are the other students? Where's the teacher?" At the time, my daughter did not know how to answer me, she simply stared. I took her hand and walked out the class room and found a teacher I recognized. I asked for her teacher and was told, "she's outside with her class." I said OK and marched outside with my daughter.
I pulled the teacher to the side and sat my daughter down to play with my phone (games and such). I ripped that teacher a new asshole for leaving my daughter alone, unsupervised, in a classroom right next to the exit of the school. She had excuse after excuse but never apologized. I met with the principal the next day and he agreed with me, then apologized, for what took place. The teacher was reprimanded, but that's it.
Soon later, my daughter turned five. Christmas was coming. Every day I dropped her off to the school she CRIED for me to not leave her. She CRIED... if you've ever met my daughter, she is very social, loves to talk, only cries if she's been hurt. So I knew something was wrong.
One of the evenings after picking her up from the school, I took her to a local restaurant close by. The principal of this school was there, as well as a few other teachers. I said, "Oh look! Let's say hi!" My daughter visibly shook and said, "NO! NO NO NO!" She pulled away and ran across the restaurant to get away from the man.
At that moment, I said to myself, "what the fuck did you do to my child?" I talked to an attorney about our rights being under contract with this school. There's a medical clause, that if invoked, we could pull her out. The week before Christmas break, I met with the principal one last time and requested this clause. He agreed to let us out of the contract, no questions asked. Stunned, I left his office and requested to have all her belongings packed up. We maybe received back 1/2 of what we originally sent with her. Did I mention her supplies were packed up and waited for us in the room, no good-bye or anything?
After Christmas break was over, we contacted the school our daughter was in for pre-k. They happily took her back until we figured out what we needed to do for school, testing, etc. The first week in, her former teachers said she had regressed so much, and wasn't talking. She had two accidents that first week because "she was scared to speak up that she had to go pee." Again, I have to ask myself, what the fuck did you do to my child?
Soon, we had an appointment with a child neurologist. This woman, without a doubt, saved us. She had my daughter diagnosed within her second visit. She knew what she was doing. The series of tests included:
- EEG (think EKG for the heart, but on your head)
- Blood work
My daughter was scheduled for an MRI shortly after. They sedated her and did the MRI. While she was out, they drew blood for blood testing. The MRI results were perfect. She actually had a loose tooth so they pulled it for us. LOL! Then the blood work came back. Her 17th chromosome was duplicated. The question of questions, "What does this mean?" She has 17th chromosome duplication, or 17q12. What this means is, she has epilepsy and is autistic. I cried. I cried so much and so hard for my daughter. As much as I tried to protect her from the evil of the world, I could not protect her from this.
The doctor gave us as much time as we needed. My husband was in denial anything was wrong, until he heard the diagnosis. I never have witnessed him look so defeated. We turned to each other for comfort and got through it.
Next steps. What do we do?
Doctor recommended putting her on anti-seizure medication. The epilepsy mass sat over her front leftal lobe of her brain, suppressing the speech and cognitive development.
When she told us this, I said, "Well that explains a lot."
She said, "In one month, you'll see some improvement in speech. Three months, she'll talk. One year? Who knows!"
The doctor was right. In three months time, my daughter began speaking on her own, no learned responses and not from a TV show she watched.
She is now eight and 1/2. She talks like no ones business, she still stims daily, but this is okay. She stims because she's excited and happy. She reads so good for her age, and she can have conversations with us. She's eight, like I said, but she is around a six year old speech level. Considering she lost almost four years before being diagnosed, this is okay.
I once told a friend that I never mind hearing her sing, that it's music to my ears. Up until four years ago, she never talked on her own. So to hear her sing? Yes, please, fill up my house with your music!
Two years ago, my husband and I found out we were expecting again. It was not planned, but we were very excited! My daughter's neurologist sent my husband and I off to get our blood tested. Why? Because my daughter received 17q12 from someone; it's very rare for it to just appear. Fear settled in us, so we went in for testing.
Guess who carries it?
A second later, I miscarried, April 12th, 2014. The cause? 17q12. Without going into detail in how we found out, my OBGYN doctor was able to test the fetus and came to this conclusion. "Your body recognized the anomaly since it already happened with your daughter."
I cried again, for a long time I cried. I carried the guilt that it was my fault. I know it's not, but it was hard to not accept it. My husband cried a few times. My daughter never knew anything happened, and we plan on keeping it that way.
So this April, please send up a prayer for anyone who has family members with autism or know someone who has family. This topic is very near and dear to our hearts. And now you know more about me and the cause of what I fight for. Maybe one day there will be a cure. But until that day comes, we'll continue the fight and we'll continue learning, teaching, and helping our daughter become the best person she can be.
Thank you for reading and taking the time. All of the instances in her diagnosis took a matter of a few months. Since that time, we've been only going up! Life is amazing and seeing the world through her eyes, well it is eye opening to say the least.