Today I am starting this blog, and it's subsequent Facebook page, as a way to make myself feel slightly normal. I know that I cannot be the only autism mom to get to this point. I have ingested all I can take of people who have no idea what it means to raise an autistic child, telling me what I need to do to help him and ensure that he gets what he needs.
And so it begins. Let me start at the beginning. I am a 32 (almost 33) year old mother of six beautiful children. I have two girls and four boys. My oldest is twelve (going on 30) and my youngest is 17 months. Their ages and names are as follows: 12 Misty (f) 11 Kodee (m) 10 Markus (m) 5 Dominik (m) 2.5 Gabriel (m) and 17 months Arryn (f). I had my hands full long before our first autism spectrum diagnosis. I am married (for four years in June) to an amazing man named Adam. He, unfortunately, is working four hours from where we live right now and is home from one to three days a week. I live with my mother in law, Marilyn, who has been instrumental in my mental sanity these last few months.
Our first spectrum diagnosis happened in 2012. My son, Kodee, had always excelled in his schooling. He was a genius with a vocabulary that rocked the world of anyone he came into contact with. However, he was always having trouble keeping friends. Kids were mean to him and it was a regular occurrence that he would come home from school in tears because one of his friends had decided he didn't like him anymore. He had other "quirks" about him, like playing with toys that were meant for younger children, anger issues and an inability to concentrate or stop himself from talking once he started. Each one of his teachers mentioned how wonderful he was but also how he never stopped moving, panicked when there was a timed test, had poor eye contact and would often get lost in the middle of a sentence. I took him to our family physician for help. He is a wonderful man, and has been our doctor for years, and without hesitation he made the referral. He did, however, believe that Kodee suffered from ADHD, which was something that I did not believe. I tried to tell him I didn't think that was the issue, but he has a son with ADHD and so, he was certain, Kodee had it as well. I had no idea then, how often that would happen, but I learned very quickly that many people with special needs children believe they know more than they do, even me. I get reminded every day that I have no freaking idea. My children keep me in check.
Kodee went to see the Psychology people in our local area six months after the initial referral was made. Any parent of a special needs child will tell you that there are too few qualified places to get the help you need. The wait list is long, and the questions you face in the mean time are terrifying. The testing went really well and Kodee, who was 9 at the time, really enjoyed the attention he got from the amazing staff. He was diagnosed with Asperger Syndrome. He had some information sent to us regarding the diagnosis and the "helps" that we should put into place to help him succeed in the classroom. Initially, the school came off as really helpful, this didn't last long, and because of the events that were about to start unfolding, I dropped the ball as well. Kodee should have started counseling, he should have gotten a 504 plan in place. None of these things happened until much later. I fell down in my duties as his advocate but I am doing what I can to make that right.
Gabriel is my other ASD baby. He was born in August of 2011. It was an emergency c-section after over a week of active labor with no progression. His blood sugar was too low, my placenta was too thin, and it was detaching from the wall of my uterus. We would have died if I had been induced. I was put under for the c-section and by the time I got out he had already had his first bottle. He did really well for the first few weeks. However, as things do in my life, they got insane very quickly. I found out that my mother had cancer when he was four weeks old. She died of lung cancer on the day he turned 6 weeks old. Exactly two weeks from the day she was diagnosed. Everything went down hill from there. I lost my breast milk, I went into a serious depression. I lost my mind a little bit and I lost track of what I was doing, and why. Even through all of that, he seemed to be a thriving, normal child. Until right before his first birthday.
When he was 11 months old his progression stopped. He didn't want to walk, he wasn't cooing anymore, he wasn't making eye contact and he didn't eat anything other than chicken nuggets and chips. He refused anything that had a soft texture and he was growing more and more distant. So I did what I thought was smart. I went to my parents and anyone who would listen. I was met with the usual progression of thoughts, well my child didn't do that or he doesn't do what my child did, so he must not be autistic, or maybe that's just what I wanted to hear. My step-mother thought maybe Asperger Syndrome but not ASD, at least not full blown anyway. My husband didn't want to deal with at all and I was sure he was just hitting a bump in his learning. With all the stress (we moved right before the regression started) I figured he was just taking his time with learning and speaking and if we gave it time, he would get better. He got much, much worse before I did what I should have. It actually took me moving far away from my friends and family and into a house with my mother in law to get him what he needed. I started at Autism Speaks. They are AMAZING people. I cannot say enough good things about them. We took the M-CHAT-R (Modified Checklist for Autistic Toddlers-Revised, which can be found on their page under screen your child) online for Gabriel. He had everyone of the markers. When I had something physically in my hand to show my husband, we made an appointment for a referral from our "new" family doctor, and we cried. There is something to be said for the "experience" I got from having Kodee tested but nothing could have prepared me for what we were about to go through with Gabriel.
The next few weeks were a blur. There were phone calls and tests and visits from the Early Intervention Team. There were forms to fill out, permissions to give, meetings with Gabriel, tears, melt-downs, and yes, it was hard on Gabriel too. ;) Seriously though, it was insane and if I had to try and go back now and remember everything that happened I wouldn't be able to do it, even with a gun to my head. It was too much, too fast, and I am really glad it's over. At least I was, until I was told that a diagnosis from the IET is not a diagnosis and we have to start all over with the medical field in order to obtain a medical diagnosis. (Oh joy of joys) That is what we are doing now. In January he was diagnosed by the wonderful people at Early intervention. It is now May and we are having to start all over again with the people at Mayo Clinic in Rochester. There is (surprise, surprise) a four to six month waiting list. We are on it, and so we hurry up and wait.
I hope this gives you some idea of who we are and where we are at. I will be writing again. I have a million things to write about. If you find this, by some random chance, and you have questions, please let me know :) I would be happy to answer any of them for you. Or send me an email here Mindy's Email
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