12 Comments

  1. GP
    March 7, 2016 @ 11:57 am

    Interestingly, I just read a fascinating article by Clarissa Kripke who is a Family physician at UCSF and who also has a child on the spectrum. She wrote about successful community living for people with developmental disabilities and how California offers special services and regional centers through the Lanterman Act. UCSF is the Director of the Office of Developmental Care, which among many things provides medical care to medically and behavuorally complex patients, provides training to clinicians in creating a healthcare environment geared to improve care for people with developmental disabilities, and offers support for patients with developmental disabilities. It also seems to help people navigate the process of integration into the community. I am going to look into similar services outside of California, but for the first time have considered moving there in the future (afraid of the earthquakes and wildfires, though). I have to research things, of course, but if California is indeed the most advanced and successful in terms of enabling adults on the spectrum to live up to their potential and achieve their dreams, I’ll seriously consider relocating one day.

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    • GP
      March 7, 2016 @ 12:01 pm

      Correction of typo: At UCSF, Dr. Kripke is the Director of the Office of Developmental Primary Care (not “UCSF is the director of…”).

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  2. Gail Aubertin Brunt
    March 7, 2016 @ 12:31 pm

    Wow. I’m there. My 18 year old daughter is on the spectrum and also has been diagnosed recently with Borderline Personality Disorder. For many years I think I refused to face the reality- always thinking -she is going to get better. She hasn’t. She’s gotten worse. I remember taking a NAMI class for parents a number of years ago and having a hard time with developmental disabilities being classified under mental illness. And now she’s 18 and, and high functioning, but there’s this really nasty mental illness on top of it all. I’m starting to plan for a future which includes her living with us. If at some time in the future a group home becomes a possibility, then it will be a blessing. But we live in NH, and the mental health system is dreadfully underfunded, and it’s only going to get worse with the huge influx of ASD kids who are going to be adults someday. We are older parents, too, as she is the 7th of our 8, and I was nearly 40 when she was born. All we can do is keep going, keep teaching, keep searching for resources. Someday I hope she will be stable enough that we can take a break. In the meantime, I do what I can to take care of myself, to be healthy, physically, emotionally, and spiritually. Otherwise I’m no good for anyone. Keep writing, Carrie. I enjoy your posts immensely. It’s good to know that we aren’t the only ones.

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  3. Pam
    March 7, 2016 @ 12:39 pm

    GP’s comments about the services available in California is interesting, but it still isn’t the same as having a typical child grow up and work on achieving dreams. It’s something that parents of children with developmental disabilities must deal with. It’s like grieving a death, but it never ends. Just when you think you have the perfect solution, something happens that hits you on the head and you know life will never be “normal” for you or your child. Our 30-year-old son lives in what most people call a “group home” in our home. They bring him to church and they do lots of things with him, but his life is not the same as it is for our other 3 “normal” kids. Yesterday I sat down in church about half-way up and after church had started I heard someone making some weird sounds and I instantly recognized those sounds were coming from my son. So I went back and joined him and his staff person. My son continued to make weird sounds and stimmed quite a bit throughout the service. It’s life and I’m usually just fine with it, but after all these years it can still be like being hit with a brick to have to deal with it. I hope and pray he’s happy, but I will never know for sure. His life certainly is different, and I’m not sure if it’s what he wants. But at least MY life gets to be a little more normal….because he DID move out of our house!

    Thinking of you, Carrie, and praying for you and thanking God for YOU and your blog!

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    • Pam
      March 7, 2016 @ 12:44 pm

      I meant that my son lives in a group home in our TOWN, not in our home! 🙂

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  4. Jeannie
    March 7, 2016 @ 2:03 pm

    I so agree with Gail above. (In fact I also have an almost-18-year-old daughter who is finishing high school and thinking about university and I am thinking “yes, she can go to university and do well academically but she can’t live alone….”). Thank you, Carrie, for talking about what we’re all thinking. Every situation is unique, I know: but the stress and worry and sadness is often very much the same.

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  5. Susie vanderKooij
    March 7, 2016 @ 2:47 pm

    Beautiful. I feel like you are in my heart and you are saying/seeing all I hope, fear, and anticipate each day…..thank you for writing and sharing such incredulous reality and pure light into our lives……

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  6. Deb
    March 7, 2016 @ 8:58 pm

    It just breaks your heart over and over again. What I really mean is that it breaks my heart over and over again. I wish my daughter could have a boyfriend. I wish she could talk. I wish she could tell me what’s bothering her. And then she hugs me. She’s not a big hugger but when she does, it breaks my heart open.

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  7. Jan Anderson
    March 9, 2016 @ 6:17 pm

    My 17 yr old grandson is also talking about going to college, making new friends etc. My daughter and his teachers feel he should be given a chance to try a couple of classes at a Community College in his hometown. This particular two yr college has classes for children with special needs. It is one step at a time. Living on his own remains the biggest challenge for his parents and himself. Can it happen? Will it happen?, Try not to crush their dreams, we have no way of knowing the future, but we can continue to have hope. Miracles do happen. Thank-you once again for your posts, they give us all help dealing with the same issues. My daughter is a speech teacher and works with many wonderful children on the spectrum as well as having her own challenges with her son.

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  8. Sara
    March 12, 2016 @ 2:48 pm

    Usually, when i get the email that you’ve made a new post i quickly click on the link and read it. For some reason i saved this one for a couple days, until i was in a space i could quietly read and take it all in. Now i know why. Because. This. Once again, Carrie, you’ve put words out there that have been in all of our heads. Thank you.

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  9. sothisisholland
    March 14, 2016 @ 4:39 am

    I relate with this a lot. Some days Isla has perfectly normal interactions with her peers and I think she’s probably going to do everything they do. But then she sits on the floor in the breakfast line at school because her sock seam is uncomfortable in her shoe. It’s so unknown and an almost everyday wondering game.

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  10. Dora
    April 1, 2016 @ 8:30 pm

    I’m totally there. My son is about to turn 20. He is so capable and yet, he is not able to do some things. My heart hurts for him. He is so stuck and I can’t figure out how to push him forward. I hate it when people say stupid things like “All parents struggle with their kids not wanting to grow up”. That is not what this is people. It’s not the same thing. My heart hurts and I keep moving forward despite his life being frozen.

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