Tuesday, March 18, 2014

Our Eli

Not really sure how to write or what to even say, but I just wanted to write a bit about Eli. Since he was about 16 months old we noticed that he has some "red flags" for autism. He would sway his body in a very fast rhythmic motion, sometime hit is head on things when he was upset,  he didn't have any words, would squeal like a siren constantly to communicate, and got very picky. I would get very worried about it and start to wonder and would tell people that I thought we should look into getting him tested and time and time again I would be told that he was ok, and that it is best to wait to have children tested around 3 or 4 so I would get to a place where I was placated again and then I would get worried. It has been a constant roller coaster for me.

Sometimes my heart would get so hurt by well intentioned people who would make comments about some of his behaviors, and that they wished he would stop doing certain things, or that maybe if we just tried this, or disciplined him differently things would be better. I am not extremely prone to crying, but I would get angry, it was like being slapped in the face for just trying to do my best. He was once even man handled by a complete stranger in another ward because he was blocking the drinking fountain and hitting the button over and over again. I was furious

A few summers ago, I had a heart to heart with my friend Lyndsay who out of all people I felt could tell me if we should have him tested or not, because he sweet son has autism. She just listened and shared her experience with me. She didn't judge or made suggestions and just listened and cared about what I was going through.
I just wanted someone like his pediatrician or his neurologist to say "yes, what you are seeing is completely valid and your not crazy, let's get the ball rolling. Gratefully this happened last fall when we were visiting Primary Childrens and his neuro noticed what I had been telling her about and she got us a referral, to a clinic that would just be a co pay as opposed to the massive amounts we were told we would have to pay if we had him tested privately.

Eli was tested about 3 weeks ago, and he does indeed have Autism. Until 6 months ago he would have been diagnosed with PDD or Pervasis Developmental Delay, but now all of the categories just fall under the umbrella of Autism Spectrum Disorder.  He is a sensory seeker, his eye contact is good and he wants to socialize and make connections with people he just doesn't know how.

Even though I knew it was coming, I still mourned for my boy. Even though he is exactly the same boy as he was before he was diagnosed I went through a period of grieving because I know that life is going to be harder and different for him than it will be for my other children. I have gotten very sad at times thinking how hard it must be for him to be in a body that can't do all the things that he wants it to, and that there must be A LOT of frustration.

Eli is an marvelous boy. This is his special test on earth. There are so many wonderful things about him. I WOULD NOT CHANGE HIM. Life is going to be different for us and that is ok.(Sometimes that thought is hard and daunting)

He has brought more love, compassion and charity to our home that we would not have or experience without him. He is smart, and loving and generally happy. He loves car rides, walks, rocks, water, swinging, hiking( he was given the nickname Tote Goat last summer by my dad when we were camping because he could go and go and go on long hikes and would only now and again say "hold you" and need to be picked up for a minute or two and then would go back to his hike.) being chased, coloring, and spinning, grazing all day long, and his bednet.

Gratefully there are many resources to help him succeed and function better, and it is for sure going to be a process in figuring out what we can and should do for him. Some things are very expensive and are out of our reach but there are many wonderful resources to aid him along.

Somedays can be very exhausting and I am so grateful to have Jed by my side. He is very good at listening, and then listening and then listening some more. I try to remind myself when I am just at a loss of what to do, that I just need to love him the way that the Savior would love him, because that is exactly what he needs. Ruby and Emma are such good helpers with him and allow him to be with them and their friends, and just roll with the punches.

I love my boy. He is amazing and wonderful and special. I am thankful that we have him as part of our family.