Autism, Life Threatening Food Allergies and Primary

photo provided by author

photo provided by author

Today’s guest author is DeeDee, a wife and mother of two who loves the temple and loves to be outdoors enjoying nature with her family. See her 3 specific suggestions below about caring for her children in Primary. 

My beautiful son is four years old. He was diagnosed with autism spectrum disorder at age 3. My amazing eight-year-old daughter has life threatening (anaphylactic) allergies. Both of these conditions shape our children’s experience in Primary.

What is it like to have a child with autism at church? For me it is wonderfully challenging, but I recognize it’s an opportunity for growth and development, for both me and for my child. Autism spectrum disorder (ASD) is a variable diagnosis. That means each child with ASD has unique strengths and challenges. Before my son was diagnosed he was struggling in nursery. A sentence kept going through my mind at that time, “The one matters.” I know that every child matters to the Lord and belongs in Primary, at church and in other church activities. Figuring out how to make that happen is the challenge.

What is it like having a child with life-threatening anaphylactic allergies at church? Life-threatening allergies are about safety. I want my daughter to be safe at church, in Primary and at church activities. It is scary for me to know that if my child eats a certain food it can result in a life-threatening allergic reaction. This makes church different for me than it was before I had a child with severe food allergies. My husband and I are diligent about constantly checking to see if food is involved at church. Sometimes snacks are given in class or as a reward for performances (like Primary programs). Other times food is used to make crafts, provide service or celebrate holidays. We have strict rules for our daughter about food & washing hands. She is very careful about what she touches and eats at church. My guard is always up to some degree at church because I want her to be safe and have a good experience.

What has helped our family:

1. We take responsibility for our children. My husband and I have learned that it is our responsibility to ensure our children are set up for success in Primary. Simply dropping them off doesn’t work. Our experience has been that things go best when we communicate our children’s unique needs with ward and Primary leadership so we can partner with them in helping our children do well in Primary. My 4-year-old son with autism doesn’t communicate verbally like many children his age. When he was diagnosed I notified our Primary presidency and spoke with his nursery leader about his unique challenges. His wonderful nursery leader did well with him, keeping the classroom calm and encouraging open play that doesn’t require 2-way verbal communication. She speaks to him as she does other children but also gives him gentle nudges to help him as needed. I also shared with her behavioral signs that may suggest he is having a difficult time, when it may be best to include me or my husband. Similarly, my daughter can’t eat nuts. Her life threatening allergic reactions can result in death or serious injury. My husband and I take responsibility for her condition by sharing applicable medical information with Primary leaders and our plan to help her if she has a reaction in Primary. We keep emergency medication near her at all times and ask to approve any food offered her in Primary. We hope that Primary leaders and teachers appreciate the steps we take to educate and include them so they aren’t left to interpret things on their own.

2. Have realistic expectations. We attempt to maintain realistic expectations at church. Church leaders, Primary leaders and teachers are imperfect people, volunteers at best. They make mistakes and can misinterpret things like we all do. A Primary leader may misinterpret my son’s behavior. A teacher may bring a snack my daughter is allergic to and forget to check with us first. These things can happen, and it helps to remind us to keep working with ward and Primary leaders.

3. Listen to the Spirit. Numerous times at church my husband or I have felt prompted to check on one of our children in Primary, sometimes urgently. We recognize these as promptings from Holy Ghost and are very grateful for them.

~DeeDee

 

For related posts, see Special Needs page and

Helping children accept others with special needs

Also see “Accepting Allergies” by Thira Christianson from a kids’ point of view in the Friend magazine, Sept 2011, 18-19.

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Filed under Reaching the One, Special Needs

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