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Monday, August 3, 2015

A Post about Autism

Most people know that Sarah Faith was diagnosed with autism in April of 2014. She is what I would consider "mid - functioning". Meaning if you interact with us/her for 5 or 10 minutes, you wouldn't think anything was wrong, but if you would observe a 30 minute sliver of her life, you would get some red flags about her behavior.

Every article you read about autism will tell you what the author and the various researchers he has interviewed thinks causes autism. Unfortunately, about everyone is different. Genetic disposition, vaccines, toxins in the air, too much screen time, food preservatives are just a few of the ideas. 

Some people claim, " You are just born with it." 

I have no idea why Sarah Faith has autism. It could be she was doubly vaccinated ( once in Ethiopia and once in America) It could be that she was pumped full of medicine too strong for her tiny body while at the transition home in Ethiopia. I don't really blame them for that.... it was either give her the medicine they had or let her die as she battled chicken pox, scarlet fever and respiratory infections the first 5 months of her life.  Thankfully,  they chose to medicate. It could be that her system could not handle the preservatives and dyes in our food.  I really don't know , but you can bet if I did and could go back in time and try to change it,  I would.

There is a quote that is used regularly in the autism circles, " If you know a child with autism then you know one child with autism." It manifests itself in each person so very differently. The politically correct way to ask questions or statements about this disorder ( and even as I write this I have to think.... "Is it correct to call it a disorder? I can't remember. ") is a bit like a minefield.

 People get offended about certain phrases used to describe their child. Some parents justify every behavior as part of being on the spectrum. Others do not want their child set apart at all and insist on mainstreaming them in every aspect of life. With a 4 year old and only navigating these waters for less than two years, to be honest, I am unsure how I feel or what I think.

Here is what I  do know and what I struggle with..... why is it that we can say cancer sucks or how much we hate MS,  that we need to stamp out diabetes or other infirmaries that people live with, but we are suppose to just accept autism?

Cause living with autism is freaking hard. 

I hate that Sarah cannot seem to understand time and consequence still at age 4. 

And that we have to decline outside birthday party invites because this summer she is terrified of flying bugs. 

I hate that she won't sit still for story time at the library and listen but wants to giggle and roll on the floor. Then other parents look at me like I need to control my child. What they don't realize is once we get in the car, she will tell me all about the books that were read and for the rest of the week,  she will talk about story time and that it was " so much fun." 

 I worry she is a disruption and is trying her teacher's patience every time she walks into Sunday school class.

I grow weary of hearing her say the same phrases over and over and still have no idea what they mean to her. Or that she wants to eat the same thing every. single. day. 

That things like having her ears pierced, pedicures or enjoying tea parties,  making crafts or  going on play dates are not in our future unless there are some major developmental milestones reached. 

She has taught me many things though... and for that I am starting to become more and more thankful. 

 Like that my patience and faith are a lot smaller in quantity than I would have liked to believe. 

That I have pride issues when it comes to being a good parent and others perception of my skills in this area. 

I am beginning to have more empathy and understanding for those that battle special needs or care for those with  these needs each and everyday. 

And most importantly,  how great the love my Heavenly Father has for me.  I can begin to see that no matter how exasperating Sarah can be, I still love her and want her to be in my family. He feels the same way about my sinful self. 

I can see that He found me worthy to raise a child that needs more from me than basic parental skills. 

I can believe His will is perfect and that He knew I needed my faith stretched and by giving me this little spicy Ethiopian princess,  out of all the orphans in that beautiful country, He would be giving me joy mixed with pain and the continuous need for HIM to pour out of me everyday. 

So, I don't know what causes autism and I may never know and I don't know the politically correct way to ask questions and say things about kids on the spectrum. I don't even know that I have fully accepted that I have a child that is special needs but of this I am absolutely sure: 

 I will praise you because I {*as well as Sarah Faith Mullis }am fearfully and wonderfully made; your works are wonderful, I know that full well.  Psalms 139:14

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8;28

And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns. Philippians 1:6

When someone has been given much, much will be required in return; and when someone has been entrusted with much, even more will be required. Luke 12:48b

1 comment:

  1. Thank you for sharing her story and yours. May God always allow others to see His grace abounding in your lives. God doesn't give children with special needs such as this to everyone. Only to those of His own choosing, therefore making you a very special mom. Love to you and your family. I pray many lives will be touched by your testimony.