Family

November 01 2012
59

He was my brother, but I did not know how to love him well.

Born two months before my 11th birthday, he was a beautiful baby, and a fussy one. Colic, they said. All I know is, I spent many evenings walking around our dining room in the dark, gently singing into his ear while he wailed in pain. This small person had two hernia surgeries before he turned two, a harbinger of tough times ahead.

He was a different sort of little boy, easy-going in some ways, stiff and overwhelmed in others. Terrified by sudden noise, his own voice was often uncomfortably loud. He was fidgety yet owned observational skills that would occasionally astound us. He saw details, lots and lots of details. But he so often completely missed the big picture.

We were a church-based family, singing hymns, serving on committees, attending worship services. But Ken? he never found a safe place, even there. He was bullied and bruised, teased and taunted. It broke all our hearts and mystified us. Why couldn’t he find his way? What could we do to help?

When he was a troubled and misfit teen, my dad drew a line in the sand about counseling. Mom was desperate for it, but Dad was the boss – and usually a very beneficent one, but on this issue? He wouldn’t budge. So Mom did the best she could, pretty much on her own, worrying and praying and wondering.

He had three major episodes of bleeding before he turned 18, the last one when my parents were out of town. I lived 30 minutes away with my 3 small kids, and when Ken called for help, I drove him to the hospital where they discovered a hereditary bowel kink, cut him open and removed it.

At last, we found something we could fix!

But there would be no more fixing. Instead, there would be years and years of struggling, some of it obvious, more of it hidden.

He married briefly – long enough to father a fine son and informally adopt another. But he struggled mightily with how to father those boys when he could barely care for himself. My husband and I provided two of years of counseling when his wife kicked him out; I don’t know that it helped much.

I wonder now why we didn’t see all of the pieces more clearly. He began self-medicating with alcohol in his 20’s, so a long-ago friend told me at his funeral three years ago. We had no clue about that until about 18 months before he died. There were so many unanswered questions about everything. He lived alone, in fetid apartments, using furniture that I or my other brother or my parents gave him. He held a couple of jobs for long periods, then mysteriously left them and showed up in another town, all possessions lost in the ether.

After my dad died, two emergency hospitalizations in a three-year period finally brought all the pieces of this sad puzzle together. Each desperate time in the hospital brought frantic searching through his belongings to get the information needed for admission. And it was these terrifying discoveries that began to unravel the deep sadness of my brother’s whole story. Unopened mail, including months of bills, eviction notices, job suspensions – these sent us to a diagnostic psych exam. Results? Asperger’s syndrome – an autism spectrum disorder not even identifiable until the 1990’s, when Ken was in his 40’s. He was 50 when we found a name for his lifelong struggle.

The second, far more serious hospitalization, revealed the alcoholism. Excessive nighttime drinking, which he hid very well, not only added pounds to his frame, but also destroyed a heart valve. He had open-heart surgery, went to a sober living residence and for the first time in his life, made true friends and found a sense of purpose. I will thank God until the day I die for Alcoholics Anonymous. It was there that my brother finally found community, re-discovered his childhood faith and learned to accept the redeeming power of God’s love.

I remember picking him up for lunch one day, and having him turn to me and ask — for the first time that I can remember — how I was doing and how my kids were doing. Just typing that sentence makes me weep. Something deep and good began to happen inside him while he lived in that house and went to meetings twice a day. Slowly, slowly he began to recuperate from the horrendous assault on his body wrought by both his own abusive use of alcohol and the surgeon’s knife.

About four months after that memorable lunch, the manager of Ken’s residence called me in the early morning of October 2, 2009, his voice shaking: my brother had died in his sleep. One of the saddest things I’ve had to do in my life was to take my 88-year-old mom into that house and pack up his worldly goods. They barely filled 2 black trash sacks.

We held his memorial service at my mom’s church, a lovely group of people who knew Ken and welcomed him whenever he worshipped there. He sometimes added his lovely baritone to their choir. About a dozen friends from AA came and gave witness to his kindness.

One year after his death, my mother was ready to bury his ashes and we discovered that California law allows this to happen on residential property. So on what would have been his 55th birthday, my mom, my brother and his wife, my husband and I, laid Ken in the ground at our home in Santa Barbara. It’s a beautiful spot, a stone’s throw from where I sit and type this day.

I am grateful he is nearby. And I find myself talking to him from time to time, as I go about my day: “I hope you know I loved you, Ken, though I truly did not know how to do it well.”

The angel who stands watch over my baby brother.

59 comments

  1. What a sad story, Diana, and my heart aches for all of you, but I’m also grateful for AA, the redemption that your brother experienced before his death, and the body of Christ that welcomed your brother into their fellowship and makes the telling of this story one of hope. Love, Patricia

    Reply
    • Thank you, Patricia. I am grateful for those same things, believe me. I am also grateful for earlier diagnosis and intervention today for so many wonderful children and their families who will not have to try to figure it out on their own. Ken did not know what it meant to be cruel – he just did not have it in him. But he had little available to help him help himself, either. That was the hardest part, I think.

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  2. The telling of your brother’s story, reminds me of my sweet/troubled nephew. We cherish the tender moments and memories, but they are mixed with so much pain.

    I can picture my nephew on his beautiful piano, with your brother and his beautiful voice, singing praise together for an eternity with no pain, fulling understood and free in heaven.

    I am sorry for your pain, Diana. Love the guardian angel.

    Fondly,
    Glenda

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    • Oh, I love that picture, Glenda. My brother was able to do music really, really well – singing and sight-reading and understanding the technical parts. I am trusting that he is singing his heart out now.

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  3. Oh Diana, the tears won’t stop streaming. As soon as you started to describe your brother’s personality and struggles, a huge knot formed at the back of my throat. There was a familiarity in the description that hit awfully close. You see, my ten year old son has Asperger’s. We have know since he was about 3 1/2 that something exceptional was going on but it took many years for us to start putting the pieces together. He was diagnosed earlier this year. I thank God every day for his diagnosis. Truly.
    I am so thankful that there is more understanding about, and for, individuals like my son. Receiving the diagnosis was life changing. Now we have somewhere to hang our questions and receive answers. Or, not. That’s what I am discovering every day. Every individual with Asperger’s is exactly that–an individual. And thus, symptoms will vary, will wax and wane, person to person. And although my son seems to have a milder case than other individual’s I’ve known, we are still at the beginning of this journey. (We are still awaiting test results from a 4 hour cognitive/psychological evaluation just last week). The times when I’ve been most upset have been when I have allowed myself to think about his future and what it holds. Will he ever fall in love? What kind of job will he pursue? Will he be able to live on his own? Again, so many questions and the answers will only come in the living it all out.
    I’m sorry that you feel like you didn’t love your brother well. From the words that you write, here and elsewhere, it is difficult for me to believe that you “failed” for lack of trying. You have such a gentle, loving, shepherding heart that it is impossible for me to believe that your brother didn’t know that you loved him.
    With love and understanding, friend.

    Reply
    • Holly – I thank God for earlier diagnosis and intervention!! I cannot even let myself think about what a difference it could have made in my brother’s life – in the life of our entire family, actually. There is hope for your boy, friend. And that hope begins with you because I see how you love him, in your words and stories. You will learn to fight for him – at school, in any system where he needs extra attention and guidance – and he will thrive. He will always be uniquely himself, but because we know so much more about how to ‘get through’ the neuro misfires, there is such hope and promise! Praying for you, dear friend, as you navigate these tricky waters. Trusting you’ll find a way, that God will guide and encourage as you go.

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  4. Carmen

    Diana,

    This made my heart hurt, but LOVED the part where you talked about him living in the house and going to meetings. Achingly beautiful.

    Reply
    • It makes my heart, too, Carmen. And my mom and I still talk about how lovely that last year was – even though the house he lived in was depressing to look at, he LOVED it. Made me realize that some sort of community living project – if we had even dreamed of such a thing – would have been ideal for him for his whole life. I’m glad he got to experience it before he died. And those meetings? Oh my, he loved them.

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  5. I am also thankful for AA. Thank you for sharing this story!

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    • Thank you for coming by, reading and leaving a comment, Courtney. AA has saved millions of lives and relationships and I am grateful for all of its parts and pieces.

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  6. I’m just beginning to accept that I don’t have to “love well” to love and that I can let others in my family off the hook for their own failures to love me well. Seems like all we really have in this world are bits and scraps of love, nearly always mismatched and frayed, thin and wearing-through. Something, though, about the deep abiding love of God that holds it all together gives me the grace to gather up the scraps and trust in the bits and pieces I have to share.

    Reply
    • Oh Kelly! Thank you for these beautiful words. You are right – we have only bits and scraps available to us and somehow, God’s love finds its way through our meager offerings. I rely on that.

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  7. Oh…thanks for sharing…and I know this struggle…my brother, five years older than me…my brother who always bullied me…and who intimidated me…he too has struggled his whole life…he, like me, had learning disabilities but back when we were in school there was no constructive help… he been in and out of recovery…long periods of being sober…but these last years finds him back in this awful vice… over these past months the Lord and I have done some wrestling over my brother…I have held on to bitterness…not for me…but for what I see Him put my parents through over all these years…and now as they turn 88…I hate that they still have to see and feel the pain of his broken life. But your question…am I my brother’s keeper?…the answer God told me yes…and God prepared my heart…to offer him to come live with us…as he was on the brink of eviction…he somehow scraped enough together to stay…but I think God knew my heart needed a lot of preparing…and so maybe my heart was being prepared for sometime in the future…to clear the way for love.
    Thanks for sharing your story here…blessings~

    Reply
    • Oh, Ro… this is such a painful journey and I am so sorry to read all of this. Our hearts do need preparation for some of these big things, you are right. May you have wisdom to know how to love him well, whether that should ever involve having him live in your home or not. This is not easy. Praying for wisdom and grace – and strength – for you as you walk this road with him.

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  8. My little brother is bigger than me now, but as his big sister, I always felt that I had to take care of him.

    I’m so glad that your brother had you….through it all. A painful life. I’m so sorry for the pain.

    Reply
    • Looking back, I always think I could have done more. But realistically, I know there are limits. We lived such different lives and there was so much I didn’t understand. And I still weep when I think about his life…

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  9. Thank you for sharing Diana. You were the mouthpiece of God to my ears this morning and I’m so encouraged. I have an older brother with severe mental illness and related addiction issues and I often say the exact same words out loud to no one- “I do love you, I just don’t know how to do it well.”. It is so helpful to hear others stories, see the bigger picture, and have the reminder that God is present through it all.

    Reply
    • Thanks so much for letting me know this, Misty – this was a hard one for me to post. I figured there were others out there struggling with how to love a troubled sibling, so I pushed ‘publish,’ but still…

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  10. Diana, my heart is aching…with the sadness and the beauty of your brother’s life…all of our lives hold so much of each. Thank you for sharing about your dear brother and the ways your life is entwined in his.

    Love to you and yours today.

    Reply
    • Thank you, Kim. There was beauty in his life – it was just really hard to see sometimes. Mostly, we wept and worried. And spent a lot of time puzzling and feeling frustrated. And we are forever entwined, that is for sure.

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  11. You say you didn’t know how to love him well, but all I read in this story is BIG HUGE LOVE. Yes, it’s hard to communicate love with those who are struggling, but that doesn’t minimize the feelings that go along with it. I’m so glad your brother reconnected with the Lord before his passing, and while I’m sure that doesn’t take away the pain of your loss, I hope it brings you peace. XOXO!

    Reply
    • Yes, it does bring a certain amount of peace, as does the realization that he found contentment and community before he died. Thanks for your kind words, JJ.

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  12. Pam

    Diana;

    Was hesitant to read this because I knew it would be difficult. I too have tears in my eyes when I think of Ken and I do often. My heart is just hurting with your words and tears abundant. We can only work with the knowledge we have at the time and you all did the best you could under the circumstances. I have to remind myself that he has peace and joy abundant today and forever. He has no sad reminders of his time here on this earth. He has no sadness at all, forever. His life with our Lord is filled with love, I envy him.

    I love you and thank you for sharing about your younger brother whom you loved and still do.

    Reply
    • I was hesitant to write it, Pam. But this is a site that has asked me to dig deep about family issues – so I did. Thanks for your tears, dear cousin, and for loving all of us all your life. I thank God that Ken is no longer enduring the difficulties that life brought his way and that he knows he is loved through and through as he sings his heart out in heaven.

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  13. Megan

    My youngest sister has Asperger’s and so you must know it is through hot tears on my cheeks that I read this. I am so thankful that she lives in a time that, though she was undiagnosed in school, has been diagnosed as a young adult and can understand how and why she is the way she is.

    I hurt for Ken and for your parents and for you and all those in his life. Family. OH, family. It’s so hard to write about, isn’t it? Nothing comes close to touching us at our cores like family.

    Your words are beautiful and loving and such a grand tribute to Ken and a challenge to all of us to be filled with the Spirit of God that we might love each other well.

    Reply
    • I am so glad that she and you have a name and possible helpful interventions to sort through as she moves through adulthood. I really cannot let myself go there for my brother – to imagine what a difference it might have made just plain hurts. A lot. What this late-gained knowledge has done for all of us who remain is give us an entirely different picture of how truly brave Ken was as well as how desperately lost. He was facing much more than we knew – although we all knew there was something that was mis-wired somehow. We just didn’t know how to name it or help him with it. It was hard for us – but so much harder for him.

      And yes, writing these deep family things is intensely painful. But I am hopeful that it is good to do so, that in sharing our stories we help one another keep moving down the path of life.

      Reply
    • I’m so out of the loop on sign language via texting – but I’m guessing this is a virtual hug of some sort. If so, I thank you, Katherine. If not – well, I thank you anyhow. :>)

      Reply
      • It is a blogstone, which I believe was coined in the RevGalBlogPals community. It is kind of a hug. Definitely a sign of care and love. I like that it is wordless in a relational context where everything leans so heavily on language. I think of it as leaving a little stone on the path to say: I was here, and this was sacred ground. Very Jacob.

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        • Thank you for that explanation. You know I’m a ‘member’ of that community but have never figured out how to use it very well! Maybe it’s time to head over there and explore a little bit…

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  14. Thank you for honoring your brother by telling his story here. And, as for the rest of my comment well, you know.

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    • Yes, Nancy. I do know. And I send you hugs and continuing prayers and tons of love.

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  15. Oh, Diana. The ache of this loss, the peace your brother found through a diagnosis and AA, the joy in him turning to you at lunch and caring for you. I am so sorry for your loss. You’ve honored your brother today. Thank you for sharing a bit of his story with us.

    Reply
    • Thanks for coming by, Leigh, and thanks for your sympathy. In my mind – and even in my heart – I know he is better off. But there is a part of me that wishes I could tell him this, right to his face, you know? One thing this post did not have room for was that I had a dream the night he died – probably close to the time he died, actually – and he was in it and the message seemed to be this: Diana, I can’t handle life the same way you can – I need to do something different. My spiritual director felt that was Ken saying good-bye to me. . . and there was a beautiful mountain scene in the middle of that dream that he id’d as resurrection hope. That has helped a lot these last three years, actually.

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  16. Years ago they did not diagnose the problems that are so relevant today in many we see around us. Some say it is diet, but I wonder if it is something else. My own brother could not pay attention, and he day dreamed. My sister was sure she was being followed and that people were and are out to get her. They both did graduate from high school, my brother had several jobs, and is now retired, and ministers with a gift of healing. My sister is currently on Soc Security after being homeless many years. Same family, and I hope I am normal, at least I feel I am. :-)

    Reply
    • Wow, Hazel. Amazing how many of us share these stories of troubled siblings. I hope your sister has found shelter.

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  17. Diana,
    This story could be about my brother. It is very similar. I am so sorry for your family. The hardest thing is trying to help a loved one who is struggling with addictions and other problems. May your little brother rest in heavenly peace.

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    • Again, I am astonished at how many of us deal with these worries, concerns, and pain. Thanks for your kind words. And may your brother find the peace that he seeks.

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  18. Oh, Diana.

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    • Yeah, that pretty much says it all. Thanks, Megan.

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  19. Heart-wrenching and beautiful. So glad your brother had some happy times in his later life.
    My brother died of alcohol-induced liver disease at 51. A younger brother was lost to suicide at 15.
    I recently wrote about my older brother’s death at:
    http://innervoiceblog.blogspot.com/
    if you are so inclined.

    Reply
    • Oh my, Diane. Your piece is gorgeous. And exactly conveys how hard this part is. Thank you for this link and leaving me your good words. Many blessings to you as you continue to process these losses in your life. So hard.

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  20. Yes, what Megan said. Thank you for honoring Ken and your family by telling his story so well. My heart has no other words… just love.

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    • Thank you, Pat. I hope I have honored him here. And the response to his story has been beautiful to see. Somehow, I think he knows that others are learning from his hard experiences – that none of it was wasted.

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  21. i can so relate to this…i have a baby brother- who is now late 50’s- that i don’t even know where he is. nobody does, really. he’s wanted, and ‘gone to ground’ as they say. asbergers stalks our family too…my father has it, several brothers, including the one who’s missing, and a couple of nephews. i have not yet had the agony of what you’ve been through, thank God, of getting that phone call…and i’m thankful my mother is not alive to see her baby boy a criminal. your big sister love resonates with me- i have 4 brothers and 3 of them are on the spectrum, and oh how from the very beginning they have been on my heart. but the youngest was mine. he was my baby. may God comfort us all.

    Reply
    • My goodness, Denie – three brothers on the spectrum? My prayers are with you all. And I thank you for your big sister heart in the midst of it all – I can so relate. I vacillated between deep sorrow and overwhelming frustration for a lot of years, so I get this. I really get this. May you be blessed with peace in the not-knowing about that baby who was yours and has gone so far off grid. Lord, have mercy!

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  22. Diana, tear streaming down my face in this one. I actually had to stop reading for a minute to see. I’m not sure why except that God is faithful and he redeems, even if it comes in the last years of our lives. Thank you for sharing such a hard story. I can imagine it was hard to write.

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    • Thanks for coming by and reading, Shelly. And thanks for your kind tears. Yes, there is redemption at the end of my brother’s story and for that I will be forever grateful. Not all of us live long enough to experience that part and some of us never see it this side of heaven. I am also grateful that his long life of suffering is no more. He had applied for disability and been denied (even though he clearly qualified and was granted it after his death) and would have had to find some sort of work. And I dreaded that search – there was no way, in the middle of a recession and with his spotty work record that he would have found anything. The timing of it all is part of the redemption, at least for me.

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  23. Oh, friend. How this makes my heart ache deep. I, too, feel like I’ve failed in love, for different reasons, of course. But I think we can only love with the light we have, with the understanding we have, in the circumstances and time we live. In the end, God redeems it all, weaves it all, and I’m so grateful Ken fell into back His arms. This story seeps your love, Diana. It does. So grateful he passed in peace. He is home now at peace. Peace to you–and love. Lots of love.

    Reply
    • You know, we all fail at love. We are imperfect people. By God’s grace, we do what we can and we count on redemption somewhere down the line. And I, too, am grateful that he is at peace. Thanks for commenting and thanks for the RT, too!

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  24. Thank you for your heart, for sharing the pain and the small joys.

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    • You are welcome, Karin. Thank you for reading and commenting – I am always glad to see you. :>)

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  25. “…having him turn to me and ask — for the first time that I can remember — how I was doing and how my kids were doing. Just typing that sentence makes me weep.”

    Me, too.
    Bittersweet story, beautifully told. Thanks, Diana, for your willingness to go there…and for taking us along.

    Reply
    • Thank you, Marilyn. It was a hard place to go, actually, and the whole story isn’t here – but the bones are. I’m stunned by how many people can relate to this same scenario – a troubled sibling whose life has been so hard. There is no one else who shares as much of our story as our siblings, so the bond is convoluted and strong – even if we’re not in contact for long periods of time. I am so grateful to have my brother closest to me in age still living, still part of my life and my story. And though I’m relieved that Ken is not suffering any longer, I will always wonder how I could have loved him better. Appreciate your kind words – and your RT, too.

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  26. Diana, this is heartwrenching and yet beautiful. I held my breath throughout. You tell this story with such grace … I love that his ashes are close, in your garden.

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    • Thank you, Idelette – I’m glad he’s close by, too. Always appreciate seeing your face/name out here in this cyber village. :>)

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  27. Brenda

    As I am enjoying perusing thru many beautiful blogs tonight, God led me to this one… no doubt. My 52 yr old brother has lived out on the streets by choice for ten years. We did not know if he was dead or alive. He recently showed back up because he was scared he was going to die. He has fallen in love with our church (and they all adore him) and with God and for that I am thankful.

    After reading your article I am convinced we need to get him to see a physiologist. I have spent a lot of time helping him to become a legal part of society again and getting him to doctors and dentists… I have resented it and find myself even a little ashamed of him, then of myself for feeling like this. That is why your title grabbed my attention. And with tears, and a voice inside guiding me, I understand that I don’t know how to love him well. This man who I barely know and am not 100% sure I can trust, is in fact my little brother and now I know how to pray. Lord, teach me how to love him well. Thank you for sharing.
    Blessings,
    Brenda

    Reply
    • I can relate to so much of this, Brenda! My brother was never ‘on the streets,’ but did live in a residential hotel after one eviction and then snuck in and out of my mom’s place after the 2nd eviction (from a darling small apt. my other brother and I found for him, furnished for him. . . he simply could not manage. Was terrified of bills, so never opened them, etc.) We did not take him to a physiologist, but to a psychologist who specialized in testing for learning disorders and autism spectrum symptoms. That’s where we found out about the Asperger’s. But what we also found – at least 5 years ago here in CA – was that there were no resources for him available through the government – all those taxes we all pay, right? I believe that the diagnostic code for Asperger’s may have changed in the last 5 years and there may now be some things that can be found through state aid, but I’m not sure. My brother really needed a group living arrangement – where he could cook and clean but not have to pay bills or be responsible in any other way. Because of his dual diagnosis (mental health + alcoholism), the sober living residence proved to be just ideal for him. Many, many blessings as you search for answers – and as you search for freedom from shame and embarrassment. . . been there, done that. It’s hard. It really is.

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