Keep Looking Up

by Cynthia

We had some up and down periods this week with Ariella and her autism. She very excitedly befriended a four-year old boy up the road from us. The other day while they were out in front of our house playing he wanted her to come over to his house and play in front of his garage. Steve met the boy’s father and we allowed her to stay for a bit, after all she was still in eye sight of Steve. For the most part that is. I do not know how we could have prevented the small slip up that occurred over at this new friend’s house. It did not seem appropriate to bombard the father with her autism diagnosis upon introduction but that would have helped.

You see, while over playing in the boy’s garage, the little boy went and got a box of Cheezit crackers. Cheezits of all things. Wheat and dairy in those. She helped herself to some of course because she did not know. When we found out (she enthusiastically told us all about it when she came inside for lunch) Steve and I just cringed. We have religiously kept her gluten and casein free (found in wheat and dairy) for months now. I said to Steve, “well, I guess we shall just wait and see.”

I should also mention how awful this whole thing made me feel. I looked at Steve and wanted to cry. I felt like we are so weird, like freaks or something, the whole family being gluten free and all. Most people do not understand autism let alone why anyone would consciously give up all forms of wheat. In one split second I realized how strange we might look to all of our new neighbors. The rainy weather keeps most people indoors for weeks upon weeks and we have rarely seen our new neighbors since moving in until this week. This week that has brought several beautiful days that just pull you outdoors to soak up some much-needed vitamin D whether you want to or not. I began to fear meeting anyone and what that would bring.

We love Ariella beyond words and hardly ever notice her autism; until we are around others. Then it sticks out like the biggest sore thumb ever. I began to feel sorry for myself and my family and asking that horrible question, “why us??”. Why our only daughter, why her health (she has other health issues I’ve never mentioned here before), why do all of our children suffer from some sort of wheat intolerance? A year since her diagnosis and I still seem to be not wanting to accept it.

I was skeptical as to what would happen with Ariella after she gobbled up those cheesy crackers. Would she react? Or would she be just fine? We certainly have seen some amazing changes since we removed wheat and dairy from her diet. To answer those questions, she did indeed, without a doubt, react to those crackers. Within a few hours her mood completely deteriorated and she became aggressive, withdrawn, and not very responsive to communication. She began to stim quite a bit as well. (Ariella tends to hum and pace on her tiptoes when she stims.) Her bowels gave her some grief too. The final symptom that we have not seen for months and months now was her insomnia returned. Had I not seen all of this for myself I might not have believed it. Today is the first day she is seeming better since the whole incident….. Four days later.

Where does this leave me? I obviously need to be more careful and open with others. We explained to her to always ask mommy and daddy before she eats anything. This doesn’t mean she will though, after all, she knows gluten makes her not feel good but she does not know what has gluten and what does not. Also, I do not know for sure if she has the ability to convey this to others outside of her family.

I struggle with letting the world see her autism. I am not ashamed of her, just saddened by it. When others notice it it hits home what we deal with. I also do not want to see the pity in other’s eyes. Nor do I want people to think she’s odd because to me, she is the most beautiful person I have ever met.

This is definitely a more serious post for me. It is way out of my comfort zone, publishing a post like this. But stepping out of one’s comfort zone is good, right?  But, I think I am going to wrap it up though as writing it has made me tired and I do believe it might be my longest post written in four years of blogging!

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