12 Comments

  1. Diane
    October 9, 2017 @ 10:57 am

    Sometimes my heart breaks a thousand times in a single day. There are two things parents of autistic children worry about; the here and now, and what will happen to them after I die. Thank you for writing how I think and feel. I sometimes read your posts through tears. I am relieved that I am not alone, while at the same time saddened that so many of us are traveling this path. P.S. I live in Las Vegas.

    Reply

    • Molly
      October 9, 2017 @ 11:28 am

      So true, Diane.

      💜 Jack. He’s a deep thinker. This did make me cry because what he said was so painfully beautiful.

      Reply

  2. GP
    October 9, 2017 @ 12:17 pm

    I totally get it. We constantly try to predict what our teenager needs to learn to be safe on her own one day. Our child usually cannot ask for help when under stress either, which is something that we have been trying to work on. With all this emphasis on learning to be independent, we sometimes forget to reinforce asking for help. We will make a more consisten effort to simply get her to ask for help.

    In terms of traffic safety, watching kids safety videos on YouTube over and over has actually helped. Scripts and songs have also been helpful.

    Interestingly, supervised screentime, involving the internet and TV, has been very helpful in teaching my child about the manipulative nature of ads (we watch and discuss ads), click bait, signs of phishing, and much more. My child is learning not to trust people so easily, especially people she has never met. She is learning to detect sarcasm, jokes, teasing, and signs of bullying. She is learning this because I always sit with her during her screentime. It is a daily effort. I used to reject screentime (I still am not fond of most video games and definitely do not condone anything violent). However, when my daughter plays Minecraft online with her friend, they use chat mode, and she has been learning so much about filtering what she says, not sounding rude, and not inadvertently hurting the other person’s feelings. I serve as her “translator” and tell her when the other person might perceive a comment as rude. She has learned a ton in just one year, but there is still soooo much to learn. I just don’t want her to get completely overwhelmed when she is older and perhaps in a situation where she gets to surf the internet unsupervised. Sadly, we won’t be there forever.

    We also watch TV shows together. My daughter likes Star versus the Forces of Evil, the Middle, the Goldbergs, Big Bang theory, and Duck Tales, but also still loves Daniel Tiger. These shows have given us so much material to discuss with regard to social interactions, sarcasm, jokes, dealing with disappointment, heartbreak, and much more. It is a big world out there, and I found these TV shows offer a way to observe and discuss some of these issues in a safe manner- before our teen grows up and suddenly has to figure out social interactions on her own through trial and error.

    Last but not least, the ModelMeKids DVDs have been incredibly helpful to us (please note that we have no affiliation with the company). These are DVDs with video clips about how to act or what to do and say in various social situations (playdates, school, etc,). It also has scenarios where the actors model how to be a good sport, how to receive presents, how to accept “no”, etc. The actors are children/teens, which made them much more relatable to my child. My daughter used to ask to watch specific DVDs before a playdate. Since my daughter does not learn these things by “osmosis”, she literally had to watch these a lot, but eventually it stuck (most of the time anyways).

    We have to keep teaching and continue to offer learning opportunities, presume competence, and hope and pray for the best. Of course, I also try to come up with a plan B if things should not work out as planned, but for now, we just keep plugging away.

    Reply

    • Susie vanderKooij
      October 10, 2017 @ 4:30 pm

      thank you so much for sharing about the dvd’s!! My son 13, could use these!!

      Reply

  3. Pam
    October 9, 2017 @ 12:35 pm

    I love these blogs and I love reading the replies. However, so often I WISH I still had a CHILD with autism. I don’t….I have an ADULT with autism. (He’s 32 years old.) He does not live in our home anymore, but he is well cared for. But just when we think his life is in good order, his behaviors change. The people who care for him are great and are constantly trying to figure out ways to help him, but something we are all keenly aware of is that help for ADULTS with autism is hard to come by. We used to consult with an occupational therapist who had great ideas, but she does not deal with anyone over the age of 18. So we do a lot of trial-and-error. He sees a psychiatrist who prescribes meds for anxiety, but if one doesn’t seem to do the trick, he prescribes something else. And if a new med works…we wonder if it’s the meds or if it just happens to be the “time in his life” that made the positive change. And that positive change may disappear in a month or a year or several years and we’re right back where we started from. Sorry to be such a “debby downer” but serving our adult son is a challenge for us and for the wonderful people who run his home. We just keep on keeping on and spend a lot of time praying!

    Keep up your great blog, Carrie. I read it every week and look forward to it. However, I see it as a reflection on our past and not on our present and future.

    Reply

    • GP
      October 9, 2017 @ 2:14 pm

      Does your son live in a group home? If so, how did you find it?

      Reply

    • Tabitha O'Connor
      October 10, 2017 @ 3:04 pm

      Pam, I too have an adult on the spectrum. He’s very high functioning, and yet so vulnerable. Sometimes it’s harder to navigate because he’s so high functioning that people don’t think he has autism. I am doing my best to train him and set him up to be successful because I know that some day I am going to die and there will be no one to take care of him. And the system is so hard to navigate. My youngest son is 17 and we have begun to seek out services for him as well. His autism is complicated by anxiety. He does not do well outside the house, but we are moving forward a step at a time, because some day I am going to die, and he will need to be able to care for himself. (The first time I said that, I could see the fear creep over him. Gut-wrenching.) Always we are working to help them learn to use the tools available to their best advantage. You are right, serving our adult children is difficult. Keep praying and advocating. We’ll get through.

      Reply

  4. Beth Brown Johnson
    October 9, 2017 @ 1:49 pm

    Wow, “did they stop dancing”………😭

    Reply

  5. Josie
    October 10, 2017 @ 4:55 am

    I will. I will and I will teach my children to. We will hold his hand and we will hold his heart and we will love him. I can hear what a hard journey this is but my family is just one among many who are learning how to love and serve yours. Thank you for helping us.

    Reply

  6. Joann D Carlson
    October 10, 2017 @ 12:22 pm

    Watching the lives of an autistic child and the struggles of the families, so thankful for those parents and grandparents who maintain and do in the lives of this young life. Often in stores, when I see a parent who is struggling with their child, I remind myself to breathe and be present in that moment. We had a hyperactive one and while different, he ran out in front of cars, fell from monkey bars, climbed on school roofs. Screamed in a swimming pool! Can so identify. Also can identify with those who lost loved ones in he Las Vegas shooting as our precious adult son was murdered last December. The grief is still raw! Until we meet again in Heaven! May those parents who are struggling every day with the world of autism be blessed with family and friends who can step up to help them! And Carrie – your blog post was shared by a friend who can identify with you. I know that through the times of loving their child, that they know they are not alone. Bless all of you!

    Reply

  7. Beth
    October 10, 2017 @ 12:23 pm

    Trying to convince the court appointed lawyer of how naive and defenseless my 18 year old is at this time. I have been trying to get full guardianship since he turned 18. Sadly, I have to battle them to protect my son who has no ability to protect himself. It’s a crazy world we live in!!!!

    Reply

  8. Kim black
    October 10, 2017 @ 7:46 pm

    Unfortunately last week here in our small community in West Virginia a mom of a two children, one with autism and downs and the other with autism, shot her children and then herself.

    Nobody saw it coming, the five year old girl with autism and the mother died. The seven year old with downs and autism is in critical condition. The special needs community is large and close knit in this area, they are devastated.

    Yes, if I saw Jack or any person on earth not protecting themselves from danger, I would help them. I would drag him from a burning building, I would shield him from bullets and protect him from a hurricane.

    God made us all and loves us all just as we are. I would want somebody to protect my children if they could, I would not hesitate to help somebody else’s child no matter if they looked like a grown man!

    Reply

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