I Crave

Alex was officially diagnosed with autism on Thursday. He is 7.5 and we started this  journey when he was about 3.5 years old.  We asked the pediatrician in Sioux City to start testing Alex and got  nowhere, though his preK teachers saw issues and couldn't pinpoint it.

We had numerous evaluations done in K that resulted in nothing in the school system 

 When Alex entered first grade, he had a lot of difficulties and we began independent testing.  The teacher didnt recognize autism and told me several times that if I was more consistent, I would see better behavior. (Do you see my eyebrows raised?).  Never mind that the medication we give Alex wears off around 4 pm, so he's much more challenging around 4.  Yes, you're welcome, teachers. I really do care about you and my child's success. 

I'm going through the same process of acceptance and grief as I did when we received the same diagnosis for Gabriel 4 years and 1 month ago. 

I'm mourning the loss of that healthy child.  The pediatrician declared my son, "the healthiest preemie ever."   I'm not exaggerating, it is what he said after Alex was born.   And he was a healthy premature newborn.  Thank goodness for the "take home preemie". 

Today I'm angry.  I'm angry at everyone in the school system who hasn't seen the autism.  I'm angry that the my child has to struggle with social skills, language development, fine motor skills, sensory processing, and more.  I'm angry at anyone who can't relate to me. 

I'm no longer the mom with one child but two children on the spectrum.  That is my new world. I am not exaggerating when I say - they both have ASD, be kind to me please.  (I am really thinking- for the love of everything, please realize that these are little boys who are struggling.  They aren't little brats).  And when you, the stranger, the friend, the acquaintance, reach out and you take time to understand, please know that I love you. I appreciate you. I know you took time out of your day for me by whatever you did, I just have NO time to tell you.  This might be it.  Those long letters I used to write that thanked you for your kindness are now filled with time dealing with research, medication runs, hospital visits, doctor calls, insurance arguments and more.  Give me time, when the school isn't calling or emailing me 3-5 times a day, I will find time for me and for friendship

I crave normalcy. Or typical interactions.  I crave it.  It is those moments when we are in public that I notice how "not typical" we are in our home.  When we have to leave a ride at Universal, I wish we didnt.   When my child is screaming because I won't count backwards from ten for the fifth time, I want normalcy.  

But this is it.  This is my life. Right now I'm angry because I was told that my healthy child isn't so, he has autism. I will go through the grieving process and embrace these gorgeous little beings.  It will happen soon, just not today, when I'm angry.  

Another specialist...why not?

I've noticed Lane's left eye tends to float outward throughout the day. We've noticed it happening since she was a few months old. Given all the other medical concerns in our family, this issue didn't seem as pressing as the other issues.
When I caught my breath, I thought I should take her into a pediatric specialist. It is her eye sight after all and I would feel awful if I messed that up I couldn't forgive myself.
Lane dislikes doctors so much that she falls asleep on the way to appointments. What a cool trick, right?
At first Lane wouldn't tell the nurse or doctor the names of pictures. It's tough to test vision without a verbal response. Since Lane can speak in full sentences, we had to explain the importance of speech and how that related to leaving the office. She had a lot to say after that but unfortunately, we had to stay longer due to eye drops
Our poor Princess did not like having her eyes dilated. We made it through the two hour appointment without many problems.
Lane's diagnosis: intermittent exotropia. It's common and means her eye floats to the outside edge. She needs to wear a patch for an hour every day for the next 8 weeks. It sounds doable but she HATES it. Maybe some bribes are in order.
We will return to the dr in June to see if patching worked or if she will need surgery. The condition, also known as lazy eye, can cause decreased vision. So we are off to play pirate every day!