Our Autism Journey- Part II

Part II- Diagnosis

It was Big's 12 month check up.

We received an official diagnosis of Asthma and then we started asking questions and getting a direction to go in as far as his developmental delays.

Our wonderful pediatrician was very attentive to what we were seeing and not seeing and she seemed to be as concerned as I had hoped she would be.

We started with a hearing test.

 This was an obvious first step since he wasn't looking in the direction of sounds around him, responding when his name was called or reacting in the way he should when sounds that should scare the be-jeezus out of him happened.

Other than the fact that he lost his mind when they put the things in his ears it came back normal.

Perfect hearing.

Step one complete.

After this test we went in for our food allergy panel and found that he was allergic to milk and eggs and then later found that he was also allergic to tree nuts. He also has a sensitivity to soy but it doesn't cause the type of life-threatening reaction that the others do.

So, in the midst of all of the other testing and new asthma meds, we had to overhaul our diet too. Yay!

The next step was to a child psychologist to start the interview and evaluation process. The first interview was to get a family history and an overall idea of what we had concerns about.

This doctor was also magnificent.

She listen to me fumble over my words and watched me chew my fingers as I nervously went through all of our families medical history.

She stopped me a few times and clarified what I might have missed or skipped, all while being interrupted by me prying Big off of a door knob or pulling things out of his mouth and stopping him from climbing a large doll house in the corner.

She smiled, paused, ignored what she needed to and continued on as if there wasn't a tiny tornado destroying her office.

She ignored my red cheeks that were burning from the embarrassment of not knowing how I was suppose to control my child and when I had to sign the papers at the end, she looked past my hands that were shaking from the stress of having him in such a small space for so long.

 She smiled and told me that she would see us back after the play evaluation.

I carried Big to the car, strapped him in and drove off with tears streaming down my face.

Daddy was with us for the play evaluation and it was a huge relief to have someone there with me that wasn't a stranger.

We went over the things that concerned us and she nodded and wrote everything down. Then she asked us what I still think is one of the hardest things we had been asked up until that point in our lives and that was for us to let him play by himself and don't try to correct or influence his play.

Daddy and I looked at each other and I could tell that he was going through the same thing in his head that I was. Thoughts were going off in my mind like gun shots " What if he doesn't understand? What if he puts things in his mouth? What if he cries? What if, what if , what if????"

It was hard but we made it through with Daddy only getting on the floor with him for a few minutes before I reminded him that we weren't suppose to interfere. She told us that she saw some things we had mentioned but that she would write up her full report and the doctor would go over all of the results with us at our final appointment.

November 27, 2013

We arrived a little before our appointment time because we apparently wanted sit an agonizingly long time in the waiting area before being called back.

Dr. C wasted no time, which was exactly what we needed.

Even though I already knew what she was going to say, I think I had held on to this small hope that I was over exaggerating some of his symptoms and that we would just need

some speech therapy to catch him up and then everything would be fine.

When she said the words Autism Spectrum Disorder, it felt like a hand tightened around my heart. I knew, but hearing it out loud makes it real.

It takes it out of my head and puts it on the table in front of us.

She believed that he was in the moderate to severe range due to his speech and emotional delay. His physical development was close to being on track and his cognitive delay seemed to be mild. He also had a lot of sensory issues that were a significant concern.

I held it together and asked the questions that I needed about what our next steps would be. We talked about therapy referrals and the amount of therapy she recommended. I was shocked when she told me that she wanted him in therapy 24-36 hours a week.

36 hours?!

That's an entire work week! How are we suppose to do that?

How do we even start? 

She recommended ABA, Speech Therapy and Occupational Therapy.

I was overwhelmed.

 We got home and I cried some more. I felt like I cried for a month straight but it was more like a day. I'm not one to linger on emotions. I let myself mourn the childhood that Big wouldn't have and then I moved on to figuring out how to make his life great regardless of if it was the happy childhood I had in my head or one that we had to do a little differently.

So we pulled on our "big girl panties" and we waited for our calls from therapy. We got through the holidays. We told our families and we got waves of support and some shock. My sweet sister-in-law reached and told me to call if I ever needed anything. He daughter was diagnosed with Sensory Processing disorder and a speech delay so she understood completely that sometimes you need someone who's walked the path before you.

The overwhelming support was wonderful and we knew that we could get through anything.

When I told the ladies group at our church about his diagnosis, I finally said out loud that I felt that it must be my fault. I must have done something wrong during my pregnancy or when he was a baby. When I cried and said how ashamed I was, one of those sweet women told me,

"It is not your fault. There is nothing that you did that caused this. Right now,This is your crisis moment and there will be more. You will feel this way again and again. But it is okay. You will be okay and Big will be okay."

I have held onto that. I hold onto that to this day. I committed it to my memory so that every time I feel like I'm failing Big, I can remember that it isn't the first or last time I will feel that way.

…to be continued.