This blog is not your typical mom blog, but hey I am not your typical mom. In fact that is a good way to describe things. Typical vs Untypical. I struggle to name the type of family we are; I guess we are an autism family. A politically correct way to talk about kids without/with autism is neuro typical vs atypical or in our case untypical.
Since we have already established that I am not a typical mom, this post is not your typical post. This blog is not going to inspire you to make organic meals, take your kids to mommy and me classes, or baby music or yoga, or even to encourage your kids to eat fruits and veggies by cutting them into cute shapes like hearts or dinosaurs. This blog is not a call to action or an inspiration to become a better mom or wife. It will not talk about “mommy juice” to help you get through the day. This post is to raise awareness for untypical families and feelings.
I am happy if you don’t know about IEPs, ISFPs, Medicaid exemptions; ABA, Speech, Occupational or Horse therapy; bio medical research and diets; stemming behaviors, adaptive seating, eloping or echolalia. I do not want sympathy or even basic understanding because if you sympathize or understand then you too are an untypical family. Instead I would like to raise awareness for the sake of the untypical children and their families.
When we received the diagnosis it was Savannah’s third birthday. We had already been through many evaluations and most therapists and evaluators said, “She doesn’t have autism, she just has a speech and developmental delay. She will get out of this.” We were already receiving speech therapy. The weekend before, we had a birthday party for Savannah and it was a total disaster. All of our friends arrived, more than expected. When it came time to have cake, Savannah had a complete meltdown. She did not want to stay in the pool or to be in the room with all of the people. She just cried. I took her to the bathroom and we both sat and cried for 45 minutes. I decided we would just get dressed and leave. I told my husband to serve the cake and meet us at the car. The next day we took Savannah to the doctor, again, convinced something was wrong. We thought she must have been sick and she just could not tell us what was going on. The doctor stated nothing was medically wrong with Savannah and referred us to a new doctor in the practice, a developmental doctor. We met with him and within the first few minutes of reviewing her evaluations and reports he said, “She has autism.” My heart sank. According to the developmental doctor autism is defined as two or more delays. All of the evaluators had the information the whole time.
After the diagnosis I went through a deep depression. I was grieving the loss of my daughter, or at least my image of my daughter. I grieved my idea of her future including many of her firsts. I grieved for the experiences that I wasn’t sure she would have. Her prom, going to college, her wedding, and her children. I cried whenever I thought about her now unsure future. For me, I had to dig myself out of my funk and start advocating for my child. I started running because running was the only thing in the world I hated more than autism. While I ran, I could not think about autism, or Savannah, or anything besides running.
After I recovered from the initial shock, and impending depression I had to start advocating. We needed to figure out the problem and wrap our heads around what was best for Savannah. My husband and I started reading, he more than I. First things first, she needed therapy and a lot of it. Studies show that she needed at least 20 hours a week of Applied Behavior Analysis (ABA) therapy for the most positive growth. So we got therapy. Next we worked on diet. Study after study and trying anything that could help our daughter has been our mission.
In the two plus years since Savannah’s diagnosis we have seen countless specialty doctors, fired numerous therapists (some for cause some because they just weren’t a fit for our family), had dozens of evaluations and IEP meetings. We have advocated getting Savannah on Medicaid and receiving additional services. Our daily lives have turned into a standard routine of school, therapy, homework, dinner, bed. There are not many hours left for free time or playtime but we know this is what is best for Savannah right now. I even joke with my coworkers that my daughter works more hours than they do, school from 7:30-4 (which includes ABA, speech, and occupational therapy), home ABA from 4-6, homework from 6-6:30, and then bedtime at 8.
I don’t ask you to pity our family, to sympathize, or even understand our day to day. I just ask that you think about these things when you see a child acting out in the grocery store or on an airplane; when you are making the birthday party invites; or when you are simply asking your girlfriend how her kids are doing. My family probably will not accept many of your invites due to our hectic schedule, but we always want to be invited and included even if we can’t make it. I am not the typical mom because I have to support my wonderful untypical child.
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