Days Like Today........

Days like today.... Remind me how far we still have to go and how much autism has impacted our life. I have felt so strong these last couple months and then one family get together turns me into a mess. I had to deal with family members today that don't care about what we are going through with Noah. They talked to each other about their nice normal lives never once asking us how we have been doing, or how Noah has been coming along with therapy- Not one question! Noah, even though he is more aware, cowered in a corner as they looked at him like he was a zoo animal and tried to get him to engage. His cousin who is 2 months older was talking up and storm and playing with all of his toys and communicating easily with relatives. My heart ached as I compared him to Noah (I know that I shouldn't, but I did)....In that moment, I felt as if all of our hard work and all of Noah's progress didn't seem so big after all. 

After everyone left, I cried. I wonder if our lives will ever be the same after the diagnosis of autism. I wonder if I will ever feel truly happy again. I look at pictures of myself and I don't know the person I have become. I don't even look like myself anymore... I look exhausted and depressed, where did I go? 

I feel like this family event, my birthday party (of course!), ripped away the scab where I was healing.....and I am raw.....once more. 

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