Hope Is My Fear…

Hope is the only thing stronger than fear, and on this journey, I've lived in fear 99% of the time. You know when you talk to yourself through the day, or just having random thoughts that consume you? Well any time I think of Alley, gosh do my thoughts always start with "I hope..." and that's my way of masking my fears is hanging on to hope.

The past couple weeks have been rocky with our guy. This time of year his environmental allergies are atrocious. He has a tree pollen allergy that consumes his body. Just like last year, his eyes become infected, swollen and itchy, he gets some sort of drainage in his ears to inflame them along with pressure headaches. It's miserable and if he's physically miserable, well behaviors are inevaitable. Try navigating that without a voice? Without being able to tell your parents what's wrong (anything we can't physically see)? It is SO hard on everyone.

In the midst of all of this going on we had our first trip to a Functional Doctor. This is someone who has been on our radar for Alan as a possible avenue to try for him. One we haven't attempted yet. A Functional Doctor is someone who listens to everything he has going on (not just allergies wise) and helps us to get to the actual root of the problem, in this case his lack of verbalness and his overall comfort in his own body and behaviors. The timing of this appointment was ironic. It had been scheduled for months and months prior to Wednesday of last week. Tuesday came, and my phone is ringing while he's at school... it's the school nurse. Yes, her number is saved in my phone, so is the bus driver, the teacher and the secretary. When you're one of their number one parents to call, you save those numbers so you are mentally and emotionally prepared for what is going to be said on the other line. Of course my heart sank. Thoughts of fear masked with hope flood my head. What did he do now... is he hurt... did he hurt someone else... shooooooottttt. I answer, and it always begins with "Hi! This is the school nurse calling about Alan. Now it is not an emergency BUT..." it's always the BUT that gets me. She was calling becasue Alan was upset, meltingdown at that point which turned into him biting his wrist and hand over and over and over again. Talk about the most heartbreaking thing. To hear your kid is SO upset because he cannot advocate for himself or let people know how he's feeling on the inside, that he has to bite himself on the outside. Well, there goes my heart, shattered...again in pieces...

...Pick up those pieces, and get it together. We ended the phone call. My stomach was in knots the rest of the day. He got off the bus and oh my goodness his eyes were practically swollen shut at this point. His allergies went berzerck. That night, we hit our point and took him to the immediate care.

He was given a steroid to combat the inflammation taking over which helped extremely. Obviously we try to avoid all medication for him because of side effects, but sometimes we just have to. The next morning we were getting ready for Functional Doctor that was over an hour away. His allergies were much better at this point. While my parents were here (they were babysitting the other two boys while we went) something so beautiful and shocking happened. Alan had the most meaningful communication I have ever witnessed. This might mean nothing to some people but if you could have seen it, it was absolutely magical. He apparently loved his brothers baseball shirt he was wearing because he would walk up to Vinny, point to his shirt and then point to his own shirt that had a basketball in it. And smile, like ear to ear happy smile and then clap. Then he wanted Vinny to sit by him, like genuinely wanted his brother to be by him. Kissed him multiple times, was pointing and trying to communicate with everyone else in the room. I honestly am not giving what happened enough detail but it's so hard to put into words how captivatingly magical it was to watch. It lasted for about twenty minutes (because we had to get on the road) him trying to appropriately and functionally communicate. It is something I'll never forget, ever. We explained what happened to the Doctor we saw that day and she attributed this little outbreak of communication to the steroid he had the day before. This just told her he has inflammation throughout his body and brain which the steroid helped with. Man, did that get my wheels spinning!! For now we will hold onto that and know that his communication IS inside of him. We just have to find a way to get it out and again there's that hope.

We are still waiting on results from that appointment. He had to get six tubes of blood drawn (which all things considered he did better then I expected) and a urine analysis. Once we get the findings of those reports the Functional Doctor will meet with us again to figure out a course of action. There's that hope again, trying anything and everything for our guy. Spending all kinds of money to do whatever it takes. The hope is that we will be able to help him find his voice and THAT HOPE is something I hang onto instead of letting the fear of him not finding it consume me. I have hope....

With Grace,

This Autism Mama

(Picture from a different day)