This particular blog has been mapping its escape route the whole day long. Today was awful. There is no way to sugar-coat it, and I don’t think I would be very honest with myself or others if I said any differently. Since Samuel’s diagnosis, I have often had extreme guilt over the sadness I have felt. I tell myself over and over again that “it” could be so much worse. But, I have also come to realize that the definition of awful in my heart and home and the definition of awful in others’ lives can be very different. My “awful” is real to me, and I am slowly beginning to grasp that it is OK! It is ok that it hurts. It is ok that I am upset and feel out of control at times when I don’t know what to do when the tantrums are many and the head banging is frightening. It is ok to classify my day as awful- no guilt attached. God made us in His image and created us with senses and feelings so that we can cry out to Him to comfort us through all of our “awfuls.”
I have prayed that when I blog that I do it as honestly and authentically as I can, so that if even one person struggling with similar life circumstances reads, they can see a true picture of my thoughts, emotions, feelings in relation to many things- autism, family updates, random happenings, just whatever my heart tells my hands to write.
A few blogs ago, I couldn’t bring myself to explain what would be next for Sam, but a sweet friend of my mom’s reminded me that educating others through our story is something I should do. So, what’s next for Sam:
After the diagnosis, I knew I had to educate myself on the vernacular and information within the autism diagnosis. If I didn’t do this, I wouldn’t be able help Samuel. I’ve been reading everything. I have organized Samuel’s medical history into a binder, with doctors’ orders, diagnoses, tests to be run, therapy centers to call, insurances to look into. I have learned about every type of therapy available. His doctors discussed which would be the most suitable for Samuel.
I have learned that when you receive a diagnosis like this, that you must wear many hats- insurance expertise, psychology student, file clerk, and the list goes on. The old saying, ” knowledge is power,” is very true. But, for me, knowledge is soothing. It comforts me. It encourages my worries and anxiety to settle, because I know more today than I did yesterday and the day before that. And, that allows me to have a sort of certainty that I am, indeed, helping my son.
Samuel will have a 24 hour EEG done to make sure he isn’t having any type of subclinical seizures. He is seeing a geneticist to check for metabolic, chromosomal, and muscular disorders. He will add occupational therapy to his PT and early intervention. And, then in January, he will start an all day ABA (Applied Behavior Analysis) intensive program. The link below explains the ABA process and research behind it. In fact, most other autism therapies are derivatives of ABA.
As tests come back and more therapy is added, we will know more and I will be sure to update.
Books that I’ve read/continue to use:
thisblandlife 
You are so very thorough. Teacher, mama, advocate. . . yes, you wear many hats in the course of a day. Being a student of the what's best and what's next will keep your mind in overdrive. Have ready those quick little, “Oh, Lord, I need your help . . . ” prayers for the times when you have those overwhelming moments of frustration confronting you. Hope you understand how many prayers are offered for all of you! Our love sent your way. . . Jack and Marilyn Jackson
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Thank you so much Mrs. Marilyn. I covet your words and prayers so much more than I can say. I appreciate you, and my “breath” prayers are flowing throughout the day. I know how much I need His guidance. I just thank you so much.
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