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.

8 comments:

  1. Thanks for sharing your thoughts. You are an amazing mom of 4 beautiful children and I am so proud of you. Eli is a sweet and happy boy and we love him so very much! Sometimes we just have to take life a day at a time and live it to the fullest. Love you!

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  2. Oh sweet mama, you are so brave and wonderful! My Cannon was diagnosed with sensory processing disorder (probably Aspergers as well, but have not had him evaluated on that). I have felt what you are feeling and know what is in your heart. It's so hard to have people judging you or your child for behaviors that they simply cannot control. There are lots of resources and options for help and guidance and I'm sure you'll find the best route for your family and Eli. Something that I have to keep reminding myself is that Heavenly Father knows my son, he knows of his potential, and what he needs. I just have to trust, do my best, and seek the Spirit for guidance. Hugs to you!

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  3. hugs my friend! I'm sure it's hard and overwhelming. But like you said, he hasn't changed and now it can only get better with the right resources. I have a friend who has two children with autism and they are such bright beautiful kids and have overcome a lot. I know the Eli is so blessed to have you as him mom and you will be there with him every step of this journey. I am praying for you to be able to know what to do and what you need, whether it's more strength or a break. Big big hugs!

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  4. Hey it is Froggy! It has been forever, but I have kept up on your cute family through your blog. I just wanted to reach out after reading your post about your adorable little guy Eli. I don't think you know but I have a little guy with autism he is now almost 8 years old. It has been quite a journey! I love my little guy so much, but I completely understand your feelings when a child is diagnosed. I have come to find some great resources and support. If you ever want to talk I would love too! Leslie

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  5. Ash you're awesome. Thanks for sharing, I haven't told this to anyone not even my parents but Scott and I are concerned about Tanner also. He is showing signs of Aspergers I think. And I have actually talked to the pediatrician about it and he kind of told me to let it ride for a little bit and see if it gets worse or if it's just a behavior he may grow out of....but I think it is getting worse. It does completely break my heart...but like you said, I would not change it for the world. My little guy is perfect. The future is a little scary, but all will be well. Eli is such a cutie! Good luck with everything. There really are some great resources out there! I believe it is quite a special thing to have a special spirit like that in your home. I worked with kids with special needs for a few years and there were usually 2 circumstances, either the family ignored them or the family was incredibly strong and supportive and super loving. And generally it was the latter with the rare exception. It really can create an amazing home experience.

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  6. Ashie dear, this truely was a beautiful post. Your love for Eli is so apparent.

    There is something about a label that can just make things hurt. I hate how people have been unkind to him. We really can't judge, no matter what, no matter the age. We are called to love, simple enough.

    I so appreciate this post and your honesty. I think the best thing you can do is be open about it. It always makes me laugh when people think they are an expert on kids and behaviors. I always wanted to say they are free to take Clay if they think they can do a better job.

    Your the mom of him for a reason and he is in your family for a purpose. I don't think there is a better family out there. Love you dear and I am rooting for you and sweet Eli.

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  7. ps. the pictures you've posted of him are so stinking adorable. the mustache picture is a favorite for sure.

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  8. This is a beautiful blog entry! Eli is a amazing and special boy who fills our world with delight! Each new accomplishment is a reason to celebrate! Oh, how we love this grandson!!!!

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