Does Autism Control Our Life?

The answer is yes. I was thinking about this today. Every single part of our life is impacted/affected by autism.

Our extracurricular activities (pretty much non-existent), our finances (have to be a on a strict budget to pay for all of Noah's therapy), our food choices (can't let Noah watch us eat gluten and dairy foods), our relationships (marriage strained, no time for friends, local family not very supportive).... our days are governed in many ways by autism. We can't just relax like a typical family...go to church,  go out to dinner, watch movies, enjoy shopping because our son has difficulty with these things. When we are home we are supposed to spend every waking hour with him- engaging him, playing with him appropriately, redirecting his autistic behaviors, not allowing him to stim for too long... making every single minute educational for him. A typical toddler is learning from people naturally. Noah does not. He does not have any internal desire to look at our actions or faces. He is often in his own little world and we must constantly bring him out of this world and keep him here with us. It is exhausting to be honest with you. But, what is the other option???

So, I look forward to the day where I can say my life isn't controlled by autism- I am not sure when or how this will happen. I am praying for a miracle- I am praying for complete healing for our child. I am praying for recovery. Maybe one day, Autism will be a distant memory... a horribly sad, difficult time we went through. And if for some reason God does not allow full healing or recovery for little Noah, I pray to God that He helps us learn how to live our lives in spite of this diagnosis. I pray that we don't lose ourselves, our dreams, our marriage, our health and finances to this disorder. I don't want to be another statistic. I want to rise above this diagnosis and live life victoriously. This is my prayer.

My To Do List

Here are the areas I am working on now to help Noah:

1) Find a ABA consultant/therapist who will be willing to do some basic training with me and my family while we wait for therapy to start (4 month wait)

2) Find a DAN! doctor who will let us pay privately or who will take our insurance (our local DAN! doc will not take our insurance or allow us to pay privately)

3) Read/Research as much as possible on treatment strategies until we find someone to train us

4) Find a multi vitamin that Noah will take

5) Completely eliminate casein from his diet- then Gluten

6) Work on structure- with his daily routine, with our home

7) Start giving Noah fish oil and probiotic

8) Continue to have him attend Gymboree play groups 2-3x/week

9) Rule out other medical issues- metal poisoning, deficiencies, possible seizures

10) Apply for Medicaid waiver

Grief, Self Care and Trusting God

Every since we suspected our son of having autism, I have struggled with waves of grief and severe depression. I know that grief is a part of the process in coming to terms with this. I know that I must allow myself time to grieve and process these feelings I am having. I also know that I somehow have to take care of myself so I can care for my son. If I can't take care of myself I will be of no use to him. 

So, I am allowing myself time to cry. I am talking about my feelings to close friends and family. I reached out to my doctor for antidepressant. I started this blog to help me process what I am going through- an outlet of sorts. I plan to attend a support group in the near future. I am trying to take one day at a time. I am praying ALOT.

I am a Christian. And this event has greatly tested my faith. I have questioned God. I have been angry at Him- Why me? Why Noah???? I don't feel strong enough to carry this load. I know that He will not give me more than I can bear.... but I feel like I can't manage it.

I have to remember these things in my darkest hours: God created Noah for a reason. He is perfect and beautiful in His eyes. Noah has a purpose. This autism diagnosis isn't a surprise to God- it is a surprise to me. God gave Noah to me to care for and I am the right person for the job. He will help me and my family. He will bring us resources and people to help. He will take care of us because He loves us.

So, that is where I am at right now.