10 Comments

  1. Marina Kovačević
    May 21, 2018 @ 8:01 am

    You are just an amazing woman and I look up to you! At least , I try..

    Reply

  2. GP
    May 21, 2018 @ 10:05 am

    I feel that it is important to remember that presuming competence is key. I found that presuming competence is not about false hopes or rainbows and unicorns, but rather about trying to get closer to the goals an individual desires. If it is not their dream to achieve something, they will not be motivated enough to even try.

    Please, please do not deflate his dreams.
    I have seen personally that “letting the air out of a balloon” and deflating dreams can crush a person’s spirit. It’s also simply “self-fulfilling prophecy.”

    We do not have the ability to tell a person who they are going to be, especially since dreams change naturally as a person matures. I think we all have had different dreams at age 4 compared to 10 or 16 or 25. Dreams evolve as we grow and learn.

    There is a difference between dreams and hopes. With hoping, one waits passively, while dreams can fuel the passion and motivation that one needs to get to where they need to be (or at least close enough). Living with roommates in San Francisco or another living arrangement may seem great after years of preparation. I would not preemptively crush that dream for him. We all need something to look forward to and to be excited in order to be able to experience the joy of living.

    It is also important to remember that just like neurotypical individuals, individuals on the spectrum at 14 will not be at the same developmental level as a person who is 24 or 30; just like a person who is 14 has gained so many more skills than they had at age 4. Yes, an autistic brain is not “magically going to rewire itself,” but the brain will mature and is capable of learning; just on a different timeline.

    A friend of ours grew up in another country. He is neurotypical, but enjoyed living with his folks till he was 35. Sounds like he had undiagnosed issues? He really did not. And his family enjoyed having him around till he was ready to be on his own. It seemed a bit longer than average to the extended family even by the standards of that country, but everybody accepted him and presumed that when he was ready, he’d move on.

    Please consider identifying and building on his strengths. If there is not one subject where it is imaginable that he could get an A, his strength has not been found yet. How about cooking? It may be worthwhile advocating for organizing an after-school cooking club (if not at school then maybe at a community center or at home).

    Positive feedback, not just in terms of grades, are a powerful motivator for success. And of course, success means different things for each person, but most of us feel that happiness and self-fulfillment are a big part of this definition. If we cannot dream it, we’ll never come close to finding it.

    Reply

    • Teri
      May 23, 2018 @ 1:27 am

      Amen GP. Everything you said I completely agree with.
      My son moved out last week. He found college roommates who he trusts. He couldn’t be happier.
      And he loves to cook. Maybe he learned a few things from me along the way.
      He even met with a job coach today. I tend to reach out via email to our case worker at Regional Center when my son needs assistance. They scheduled the job counselor meeting and I couldn’t be happier.
      I hope Jack finds a hobby like Taekwondo, piano, singing, boy scouts, or all of the above like my son did. These kids have talents that need to be discovered. I hear in your writing that you aren’t giving up hope. Lean on all of us that have walked in your shoes 👠. And keep being the incredible mom that you are. I’m a fan.

      Reply

  3. Kelly
    May 21, 2018 @ 3:57 pm

    You are doing an AMAZING job!

    Reply

  4. radsmom
    May 21, 2018 @ 5:20 pm

    Here’s something I wish someone had told me. I have a just-turned 18 year old son on the spectrum. He’s brilliant and has always had straight A’s. Guess what? Real life doesn’t have report cards. Getting a 4.0 does not mean a person is ready for college. Grades measure ONE THING and that has NOTHING to do with coping skills, independence, or executive functioning.

    I used to think it sucked being the mom whose kid couldn’t play sports well, or be on a team that’s competitive like my other mom friends. But I figured since my kid was such a great student it didn’t matter–he always had a bright future ahead of him. He could got to a fancy college and be the next Einstein. That’s a bunch of crap too. Getting straight A’s (or any A’s) in high school does not mean one is prepared for the real world.

    Being a kind human being, taking care of one’s physical and mental health independently, being happy because one has confidence in social settings, knowing how to cope with anxiety in a healthy way. Those are the achievements that parents need to feel proud about. Those are the skills that matter in life.

    Teaching your child how to be an independent & happy adult–that’s the report card that matters in the long run.

    Reply

    • Gabriel's Angels
      May 23, 2018 @ 4:16 am

      So very true!

      Reply

  5. Stevie Sturla
    May 21, 2018 @ 7:57 pm

    Thank you for sharing your journey, what you give to others is making ripples of hope. You’re an amazing mom. None of us have all of the answers, and some of us get struggles that could crush another mom. Thanks for the hope.

    Reply

  6. Kathy
    May 21, 2018 @ 8:32 pm

    Thank you so much for writing about Jack and what you’re feeling and thinking…I’m feeling all of those things too and you help me feel less alone. And anyone who can help me feel less alone in this struggle to raise my son is a Godsend. And that’s you.

    Reply

  7. Terry Haven
    May 21, 2018 @ 9:21 pm

    Carrie, I love you. Terry

    Reply

  8. Gabriel's Angels
    May 23, 2018 @ 4:18 am

    I so get what you mean, Carrie. Every single word. I remember when we first got my son’s diagnosis, we were all fired up, ready to conquer the world. As the years pass, we start to realise what we believe in our reality is not always their truth. My son is non-verbal with extreme sensory issues. So now we strive to help him feel confident and very loved. And we live for those moments he fills our house with bursts of laughter. One day at a time is our new agenda. Thank you for always sharing your feelings and thoughts xxx.

    Reply

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