Zelophehad’s Daughters

On Progress and Support

Posted by Vada

As I contemplated what to write about today, unlike past years, nothing immediately sprang to mind. Overall I think that’s a great thing. Life, even with autism, is more settled these days. We have routines and plans, and real communication, and things are pretty good.

Don’t get me wrong — life with Spencer is far from “normal”. My almost-3yo talks better than my 6yo does. If I have to choose one hand to hold in a busy parking lot or to cross a street, it’s that of my oldest child. Nearly everything in the house ends up dipped in water at one point or another, and that includes electronics. I’m trying to potty-train 3 children at once, and with the oldest I’ve probably washed out 5 or 6 times more poopy underwear than most parents do while potty training 10 children. Waiting in a line is like yanking teeth out with my bare hands.

Still, things are pretty good. Meltdowns (well, other than ones over waiting in line) are few and far between. I almost always know what Spencer is saying to me, and more than that, he wants me to understand and takes the time to help me. If I’m not sure I repeat what he said back to him, and if I’m wrong he’ll tell me so and try again, often with other cues. The one with autism is generally the most easygoing of my 3 kids, and he almost always lets his brothers have their way without even arguing when they want to go different places, watch different shows, or play with the same toys.

This is all huge progress. As my sister said when we were on vacation with them last week, if you’d told her a couple of years ago that Spencer was the one of my 3 kids she’d pick to take around with her she would never have believed you. At that point it would have been hard for me to believe we could make it most of the way through Sacrament meeting many weeks before we had to leave, because at that point we probably hadn’t made it more than 5 minutes at a stretch for the previous two years. And when I think back to some of the hours-long crying and screaming fits (with me crying, too, because I just couldn’t figure out what was wrong), it’s kind of amazing that we not only made it through them, but past them.

We still have a long way to go, but progress comes more quickly all the time, and now I feel like Spencer is generally working with us rather than fighting us. We’re struggling forward together, and not just the two of us, not even just our family. As I think back over the past few years, there have been a few instances of judgment, a few bouts of despair brought on by others’ complete inability and unwillingness to understand my son, but there have been many more instances of help, compassion, love and understanding.

Where we used to live Spencer had a preschool teacher, a case worker and a babysitter who all could not only deal with him, but loved to be around him. He had a woman who took him to class at church who smiled and gave him hugs every time she saw him, even though her calling was completely exhausting. We had wonderful neighbors who invited us to birthday parties and who came to dinners and parties at our house, who shared our struggles or who listened to them with love.

Where we are now we have a ward where I’ve never once heard a complaint about the disruption we often cause in church, and have often been told, “Oh, we just love him. We’re so glad he’s part of our ward.” We have neighbors who put up with all the things that get thrown into their backyard, and always greet our kids with a smile when they climb on the trampoline and peer over the wall. We have a group of families at church who invite everyone to playgroups and birthday parties, and check up on you if you haven’t been there in a while. Spencer has a good school with a great principal, good staff, and a teacher who is amazing and adores him. He has a primary teacher who will draw him pictures of dinosaurs alongside the pictures of Christ to keep him engaged and learning in church. We have friends who returned our dinner invitation to them and dealt with all my kids’ food allergies to make a meal that they could eat.

We’re also blessed with an amazing extended family, on both sides, who go out of their way to love us, support us, and try to understand our struggles as best they can so that they can help in any way they can. All in all, life is good, and we are blessed. I’m pretty sure the progress Spencer has made wouldn’t have been possible without all the people along the way who have been willing to help.

So, on this Autism Awareness Day, if you’re wondering what you can really do to help, think of the little things. You don’t need to become a Special Education teacher or give thousands of dollars to autism research to make a difference. Instead, try something small. Make sure the autistic child in your kid’s class gets invited to the birthday party along with everyone else (but don’t be insulted if they don’t come). Tell the parent of the child who screams in the middle of church that you’re glad they’re in your ward. Smile at the child and their parent, and make sure they feel loved and welcomed. It’s what we all want, and it makes a huge difference.

6 Responses to “On Progress and Support”

  1. 1.

    Vada, I’m very glad things are easier for you and your family than they have been.

    Make sure the autistic child in your kid’s class gets invited to the birthday party along with everyone else (but don’t be insulted if they don’t come). Tell the parent of the child who screams in the middle of church that you’re glad they’re in your ward. Smile at the child and their parent, and make sure they feel loved and welcomed. It’s what we all want, and it makes a huge difference.

    Something I’ve been thinking about a lot lately. Thank you.

  2. 2.

    I’m still not able to write something like that about my daughter with Tourette’s. Thank you.

  3. 3.

    Wow, I love hearing your gratitude. I have an 8 year old autistic son. He had his first invitation to a birthday party this past month. My husband and I both cried that finally someone was kind enough to include him. He was so excited. My son is high functioning, very sweet, but does have some speech isses. The way my son has been treated by the lds people in my area is why I moved away from the church(lds).

  4. 4.

    Thanks for this, Vada. I’m so encouraged to hear how many people have been good to your son and to you, and I really appreciate your recommendations.

  5. 5.

    Thanks for posting this. It was so nice to read. We are awaiting a diagnosis for my oldest and I found this so comforting. Thank you.

  6. 6.

    My autistic kiddo is 8 this year and our experience mirrors your re: things finally getting easier. iI’m not saying things are great, but I never thought life would improve this much.

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