Kaylynn Johnsen
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Austism Mama Writing

Scouts and other social activities

4/15/2020

28 Comments

 
​Autism from a mama who has been there. I am going to try to post every day this month. Please feel free to ask questions in the comments.

Scouts and other social activities.

I know that the Scouts filed for bankruptcy, so fill in the blank with any group activity your child is interested in, or you are thinking about for your child.

Scouts, disaster. Due, in part, to his panic with any kind of list. He did like to participate in some events as long as he wasn’t “working toward” anything. We really had to play it by ear. If he chose to leave (we lived within walking distance), he was required to inform the leader, who would call me to let me know he was on his way home. Trust me, this is a much better alternative to a meltdown.

Camp-outs, fun but dangerous. He was, still is, great at starting fires! My husband had to attend any camp-outs, and when his brother got older, he could take my husband’s place. Make plans with your husband, scout leader, or older sibling to make sure that your autistic child is never left alone. Poor decision-making skills can have terrible consequences in this kind of setting. Leaders need to be fully cognizant of any medications and when they need to be taken. (One scout leader decided to extend a camp-out by a day. My son only had enough medication for the pre-planned days. This kind of spontaneity can be dangerous when you are dealing with autistic children!)

My son had an incredible youth leader who convinced him he could become an Eagle Scout. The timing could have been better, my son was almost 17 when this happened. He came home and told me he wanted to get his Eagle. So we sat down and figured out a plan. He got his Eagle in just over one year. But that’s because he was ready to do the work. Honestly, he hadn’t been prepared before. Have open communication with your child about their desires and try to keep their expectations and goals realistic. 

Sports, dude! Team sports were a no go. Nope. So we tried tennis, which should have worked, but we didn’t know Mr. Henry. (He was awful!) Sometimes something should work but doesn’t; because we can’t control all the variables. I personally don’t know many autistic kids that are interested in participating in sports. Your child might be different.

Choir, winner! Well, until the first concert. It’s one thing to sit in a chair and sing; it’s another to stand shoulder to shoulder on risers. My autistic son almost fell off in his attempt to not touch the person next to him. He continued taking the class but attended instead participated in concerts.

Be 100% open with coaches, teachers, leaders, and anyone who is in an authority position over your autistic child. They need to know what you know about your child. And if you don’t feel that you’re being taken seriously, pull your child out of that event. Your child is more important than an adult’s hurt feelings. You are your child’s most forceful advocate. And sometimes their only advocate. Trust your gut. If it doesn’t feel right, walk away.

Knowing your child’s abilities and limits will help you walk that fine line between encouragement and allowing them to give up just because it’s a little bit hard.

Celebrate the small stuff (and the big stuff). Be flexible. Laugh.
28 Comments
Kaitlyn Sanchez link
4/15/2020 08:05:15 pm

Wow, that sounds like you did a lot of wonderful planning to make sure your son could enjoy himself safely

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Kaylynn Johnsen
4/16/2020 09:07:53 am

And it was all worth it to see his joy and progress. The memories he made will last a lifetime.

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Dr. Linda Barboa
4/15/2020 08:08:41 pm

Important conversations!

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Kaylynn Johnsen
4/16/2020 09:09:07 am

Thank you! I hope they can help and inform others in similar situations.

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Sandy Sater
4/15/2020 08:16:14 pm

My niece has two autistic kids. How do I share with her?

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Kaylynn Johnsen
4/16/2020 09:10:36 am

Please feel free to share using the url link or you can direct her to the posts on this website. I hope you both find these posts useful.

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Helen Wu
4/15/2020 08:37:16 pm

Thanks for sharing! It's a great post about what you need to know about social activities for kids with special needs.

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Kaylynn Johnsen
4/16/2020 09:12:08 am

Thank you, I believe that an important part of experience is that we share what we have learned.

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Vivian Kirkfield link
4/15/2020 08:40:52 pm

Parenting is the hardest job in the world...and when autism is added to the mix, the challenges can be overwhelming. I love that you've found ones to celebrate your child's strengths. I love that you continue to encourage him to stretch, but you monitor the situation so that he doesn't get over-frustrated. And I love that you love him!

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Kaylynn Johnsen
4/16/2020 09:19:08 am

I've been learning Spanish and one of the practice phrases is "It's important to love your children." And family is what life is all about isn't it?

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Ronnie Stringfellow
4/15/2020 09:22:12 pm

Reading your advice and wisdom makes me feel faithful instead of fearful. An autism diagnosis is one of my greatest fears as I approach motherhood. But your positively makes me feel hopeful.

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Kaylynn Johnsen
4/16/2020 09:20:55 am

Ronnie, you are one of the most loving women I know. Bruce is in the best hands. You have nothing to fear because you are stronger than you know

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Marinda
4/15/2020 10:55:02 pm

Fire! 12 y/o boys are already unpredictable. I can only imagine your concern. Thank you for sharing.

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Kaylynn Johnsen
4/16/2020 09:24:02 am

Yes, and he was scarily good at making fire! But, we learned early on that vigilance was vitally important when he burned a hole in his shirt and melted his shoes because he wanted bring me fire.

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Rachel Feagin
4/16/2020 12:43:51 am

Such valuable information to share. Most parents feel like they are in this alone. (At least I did). This is going to help many others!

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Kaylynn Johnsen
4/16/2020 09:31:11 am

You are not alone. And we can all help each other with our shared experiences. Lots of love.

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Patricia A Gardner
4/16/2020 09:16:57 am

Thanks for sharing. I would really like to know what happened with tennis that made it not work. It may be a situation another parent could avoid, and help them look for a better coach-student fit.

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Kaylynn Johnsen
4/16/2020 09:36:50 am

Tennis is a singular sport. It should have worked. Mr. Henry was inflexible. He refused to comply with the 504 and couldn't have cared less about the IEP. He was a couple of years from retirement and was coasting. It wasn't worth the fight, we changed classes and found a teacher who was a better fit. But, I will always wonder how he would have done in tennis with a better P.E. Teacher.

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Kim Kirkpatrick
4/16/2020 12:58:26 pm

Yes, it is important for a parent to communicate to other leading adults in regards to our childrens state of being wether the child was born with or otherwise.
Also, very important that parents seek out as much opporotunity for children. You never know unless you try.

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Kaylynn Johnsen
4/17/2020 04:31:28 pm

Life is a grand experiment. Life, share, and grow. That's the goal.

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Nicole Bay
4/16/2020 04:11:09 pm

Thanks for your insight and experience on autistic kids and activities. Their leaders and teachers really have to be tuned into their needs!

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Kaylynn Johnsen
4/17/2020 04:32:31 pm

Being "tuned in" is essential. I love how you put it. Thank you for your response.

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Alan Wareham link
4/20/2020 07:19:31 am

More than 1 in 100 people in the UK are autistic and https://www.autism.org.uk is an organisation which not only helps people who are autistic but educates the public about autism as well. You are an amazing one person organisation educating and helping people simply by sharing. Amazing. well done!

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Kaylynn Johnsen
4/20/2020 09:38:20 am

Thank you so much Alan.

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RJ
4/20/2020 11:06:19 pm

It’s such a good feeling to be able to meet students where their needs are. I remember one girl who couldn’t hold still in class; our leadership were mostly frustrated with her (I was auxiliary secretary) but I didn’t mind sitting with her and helping her to find quiet things to focus on, even when it meant she was drawing on my skin with a pen. In fact, that’s probably the happiest I’ve been in the service of youth, and I treasure those memories. Her behavior wasn’t intended to distract or upset anyone, she just needed someone who was willing to learn her needs and anxieties.

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Kaylynn Johnsen
4/22/2020 12:00:29 pm

RJ, thank your for sharing that amazing example of meeting a child where they are and meeting their needs and the joy that can bring you as a caregiver.

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Carrie
4/23/2020 08:24:50 pm

We tried our very best, for multiple years, to make Scouts work. It was very difficult and demoralizing for leadership to hint over and over again that the difficulties we encountered were invalid and the concerns we shared were unreasonable. It was equally demoralizing to see leadership not require loving acceptance of our child by the other scouts. Nothing is harder than watching your child hear their peers say hurtful things they can never un-hear.

We also tried a special needs Scouts troop, but it was just as terrible for our particular child's needs as the "regular" troop was. In short, there was no place for our child to fit in, no group that opened their arms to him, and the night that they lost my child on a canoe on a flooded river they never should have been on in the first place, much less in a canoe WITH A YOUNGER SCOUT INSTEAD OF HIS FATHER, well, that was the last night of Scouts for us.

We didn't even say goodbye. And no one ever asked where we disappeared to either, so I guess that says it all.

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Kaylynn Johnsen
4/27/2020 12:30:26 pm

Carrie, we learned right off that bat that scouts wasn't his thing. But, he loved camping and his father and brother loved taking him, knowing that he was their full time job on the camp-out.

I don't think anyone would have made a disparaging comment in front of my husband or older son. But, I don't know what was said when they weren't around. It probably helped that he did have some friends in the troop. One of the reasons he wanted to go on the camp-outs.

He didn't get interesting in getting his Eagle until he was almost 17 and it was his decision. And we had to start at 0!

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    Kaylynn Johnsen

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