Home > Adults with autism, Family Services > The Best of Both Worlds

The Best of Both Worlds

This is a guest post by Allison Rogers.  Allison is a lawyer in private practice in Washington D.C. and volunteers actively with Autism Speaks in their housing policy initiative.  She has a younger brother, Adam, who has autism.

For as long as I remember I would ask my Mom these questions. Is Adam going to live at home forever? No. Will he live with me when I am older? He will have a house of his own one day. When’s that going to be? I don’t know, sometime after he graduates high school. Who’s he going to live with? Ideally Jeff and Joe, maybe a couple of other boys, and a support staff.

I will be completely honest and admit that I had no role in my brother’s summer of 2010 move into a group home. Throughout the years, my Mom promised us, without exception, that Adam would have a home of his own one day. I think this was her way of protecting all of her children and not just the one who needs the most protection. She took on the responsibility, not only because she was in the best position as a mother to advocate on his behalf, but because she did not want to leave this huge responsibility of mapping my brother’s future to her daughters. As the matriarch of the family she set the tone for familial relationships. Stacey and I, as sisters, must love and support Adam, but Shari, as the Mom, will make the big decisions.

Fast Forward to June 2010. I am locked in the basement of the law library studying for the bar exam, receiving texts from Mom. He’s moved out. Are you ok? I feel weird. Do you need to talk? Ok.

We talked. I did my best to assure her it was a transition, transitions are always hard, and once she gets used to the new living situation both she and Adam would be better off. I tried to comfort her. I remember saying, “it’s like when I went off to college; it’s like when Stacey went off to college. It’s a huge, but completely normal adjustment. And most importantly, he’s FIVE MILES AWAY.” And that’s how, just for a moment, the roles switched and I became the protective one, but not of Adam, of my Mom.

August 2010 I made my first visit to Adam’s home. The descriptions I heard that the house is huge; the house is beautiful; the house is individualized to your brother’s and his housemates’ needs were not inaccurate. The house is huge. The house is beautiful. The house is Adam. Adam lives with four other boys. Two of the boys, Jeff and Joe, Adam grew up with. They each have their own rooms, reflecting their personalities, and their bedroom doors are adorned with the first letter of their names. They have ample living and dining space, a back and front yard, a television and even a Wii.

I love Adam and his new independence. Of course, the house did not cure him. He’s still Adam. He still has his moods and he will still have his nights where he stays up all night shouting to whoever will listen. He still repeats words, sometimes hundreds of times, and he will still rip his shirts and blankets for no apparent reason. Yet he is happy. He is happy with his house. He is happy with his friends. He is happy to come home to my parents’ house and he is happy when we go to the house to visit him. I see pride when he shows me his room, points to the family pictures on his bedroom wall, shows me his Wii bowling skills and sets the dining room table.

I can honestly say Adam moving into a group home has given our family the best of both worlds. He has independence. My parents have their independence. Yet we are five miles and ten minutes away from family time.

  1. Uncle Neal
    January 5, 2012 at 10:59 am

    Well said and well written. Can’t stop crying.

  2. vickie
    January 5, 2012 at 1:51 pm

    Graduate?They told me my son would never graduate?

    • Lee
      January 5, 2012 at 2:14 pm

      Don’t believe it. Get an advocate.

  3. January 5, 2012 at 1:55 pm

    This makes me so happy. <3 thank you for sharing.

  4. Autumn
    January 5, 2012 at 1:58 pm

    Really moving, and a very interesting perspective to read about – thank you. Hits on a very personal level.

  5. A
    January 5, 2012 at 2:10 pm

    My son is 16. I know, one day I will have face similar scene. I put it away in a time as far as I can, but I realize, that one day “this day” will come.
    Btw, the buildings on a photo behind you are familiar to me. Is it Regent University in Va Beach?

  6. Lee
    January 5, 2012 at 2:12 pm

    I need this to happen for my 19 yr old. Our whole family needs it to happen.

  7. Rolly
    January 5, 2012 at 2:15 pm

    This is awsome I hope the best for Adam and I am sure it was a difficult transition for all involved. I hope one day to have the same opportunity for independant living for my son who has cerebral palsy.

  8. January 5, 2012 at 2:17 pm

    I read this article and I have to say that you are right about adam having the best of both worlds! I am a residental care staff for a facility that takes care of teens with autism. I know its hard to transition him into a program but on the bright side he will learn new skills and become even more independant as time goes by. I love working here because its a challenge and its fun to watch them grow and develop new skills. I get excited over the smallest accomplishments and I am proud to be a part of that process! What’s better is that you are close to him and can see him whenever you want and I hope that it is often. The sad part about working here is how so many of the childrens families rarely visit or don’t visit at all. Don’t get me wrong there are some that come every weekend and visit and some that live far away so the distance makes it hard but they do make the effort. Its such a joy to see the looks on their faces when they get to see family. Your right, they do take pride in their home and personalized rooms and love to show you what thing they just learned to do. I hope your family enjoys your freedom and adam his new independance and remember to visit often. It makes a huge difference in their lives! I really hope adam continues to progress in his newfound living situation and don’t feel guilty about him moving out. I’m sure he is in good hands and from the sounds of it…he really enjoys it. Take care!

    • January 5, 2012 at 3:19 pm

      Andrea, thank you for what you do. Thank you for your compassion and enthusiasm and kindness. I wish there were more people in the world like you.

  9. stacy engels
    January 5, 2012 at 2:17 pm

    Thank you so much for sharing the sibling perspective. I hope our son finds a good “fit” when it is time for him to move into his “own house.”

  10. Pat Swanson
    January 5, 2012 at 2:21 pm

    Thanks so much for sharing this wonderful success story. In a time when some are calling group homes institutions, it shows that they are a very real “home” in every sense of the word. This is where I hope to see my 23 year old son in the not to distant future.

  11. Pam Veldheer
    January 5, 2012 at 2:25 pm

    Loved your story!I am a group home provider and that’s exactly our goal.The group home is HIS house and Dad and Mom’s is their house.It’s so good for them to become independent and grow and mature with their friends,We go to an activity almost every night such as bowling league church activities,art class,ect.My residents lead a very full life and are extremly happy.I also have a grandson with Autism(4 yrs.) and my wish for him would be to be happy in a group setting unless he surpasses that which he just may:)

  12. January 5, 2012 at 2:26 pm

    Thank you! I have a 16 year old son who will probably be in the same situation one day. Although, we have a guest house, and I keep asking nice young girls if they want to marry him and live there with him…and never have to work, just make him happy. Could happen! Who knows, but we just want him to be happy and near by, so your mom is a very lucky lady!

  13. Rolly
    January 5, 2012 at 2:27 pm

    Let me know if homes like this exist in ohio!

  14. Chris Mitchell
    January 5, 2012 at 2:28 pm

    This is so awesome. Thank you for sharing. What I worry about is whether there will be a group home available to all who may need it, including my son. It seems there are way more people needing placement than available. I expect it will get worse. We put my son (he just turned 13 years old) on a group home waiting list this past summer here in NC. It was a very hard thing for me to do, but with the encouragement and support of my husband I understand it’s smart to keep all options open, and even though I want him with me always, that might not be the best thing for him and/or for us, when he’s an adult. Plus we won’t live forever. This group home was awesome, but it will probably be a 20-30 year wait for it, and my son is still not guarenteed placement because of managed care coming, limited funds, etc. My son has never qualified for anything financially, not even therapies, except for what is offered in school. He will never be independent, never be able to be on his own, but he doesn’t qualify for CAP. So what will happen to him in the future? I just don’t know. I don’t want my daughter, his only sibling and 19 months younger, to have to carry responsibility. I just don’t know, but it keeps me sleepless some nights (well when it’s not because of my son being up). Will be very interesting to see what the future brings, especially in regards to services and funding for people with autism. I do commend and appreciate all that Autism Speaks is trying to do.

  15. Carol Dyer
    January 5, 2012 at 2:36 pm

    Allison,
    What a lovely piece and an especially fitting tribute to your Mom. The home the boys have has been a dream of ours and it is so wonderful to see it come true!! We are so “lucky” to have them in such a special place! How “lucky” they are to have such caring siblings!!
    Carol

  16. Christopher
    January 5, 2012 at 2:37 pm

    .Next year my son will be graduating. This year we start to look in to some group homes near us. He is excited about the move. When we first started talking about moving to a group home he had one question. “Will I be living with people like me”. He has met a few guys from one of the homes he wants’ to move in to. They have told him what it is like.
    One of the hardest jobs as a parent is letting go

  17. January 5, 2012 at 2:49 pm

    Wow thank you for sharing this! I know we get the same questions about our son and we tell people some day he will live in a group situation.I hope it will be as good a fit as what your describing your brother has. My concerns are that he could be molested or potentially abused, being non-verbal and unable to advocate for himself.I guess the time will come, in the not too distant future where we will need a guardian for him. I don’t expect his three older siblings to take him on,not with their own lives, goals and families.If one of them offers I would be ecstatic but don’t expect them to.

  18. B. Schoenborn
    January 5, 2012 at 3:13 pm

    Wonderful story! So happy this has worked out for your family. Our little guy is still young but someday this time will come. Thanks for sharing.

  19. Jenny
    January 5, 2012 at 3:20 pm

    Wow! Heartwarming look into the future! Enjoyed reading the many responses of children or parents like me. My son is 17! Time has flown by, and my baby is almost an adult! I cannot imagine life without his unique quarks. God bless!

  20. aida
    January 5, 2012 at 3:32 pm

    i don’t understand you people attitude.my 14 years old is autistic,and i never going to put him in a home for me to have independence .i wouldn’t even have a life if he’s out of my sight.

    • Chris Mitchell
      January 5, 2012 at 4:45 pm

      I think we need to be careful not to judge other people and their decisions. We all have the right to do what we think is best for ourselves and our children. By saying “I don’t understand you people” you are placing judgement on a situation that is not your own and that is unfair. I also think you may have read the comments incorrectly. I read them as parents referring to their children as being independent or not independent, not themselves wanting independence. I have worked as a Master Social Worker for many years and have seen very difficult decisions be made by families out of love and safety, and often not necessarily what they wanted, but what they knew was best. As a parent of a child with autism, I want to do what’s best for my child always, not what’s best for me. I think every parent wants that. I don’t want or need anyone judging me for MY decisions…they are tough enough to make without ignorant negative comments or suggestions.

      • Joanne Tallent
        January 5, 2012 at 6:27 pm

        Chris, Positive and honest response to a posting that really made me mad when I read it.
        Well said and thanks for sharing….

      • Gayle H
        January 5, 2012 at 7:59 pm

        Well said, Chris.The most we can want for our children is the best life possible. I am raising my 17 year old grandson who has autism after his mom passed away with the help of my mom. I’m no spring chicken, and definitely my mom isn’t. There will come a day when she passes away, and so will I. My hope-my prayer-is that my grandson will be independent enough to live in a group home. I don’t know of a parent who isn’t sad when their “babies” leave the nest, but I’ve seen the devastating results of a parent who held on to a child only to pass away and the child institutionalized because they had no acquired life skills. My grandson wants to be independent, to drive, to have a “normal” life. (His words…not mine.) His mother fought for services for him from the time he was diagnosed to the day he died.She was the BEST mom ever, and his accomplishments in life are due to her unselfish, devoted love for him.

      • January 16, 2012 at 8:43 pm

        Chris – I agree wholeheartedly. Life is tough, decisions are tough, and especially coming from the perspective of parents of a special needs child. Everyone needs to do what is right for them. There are no defined rules on how to do what’s best.

    • Noreen
      January 5, 2012 at 6:31 pm

      Really? You gave up your life? I see this as the best of both worlds too! I hope that enough will be done and we need to get active. There are a lot teens who are only a few years away from this. I believe everyone wants there own space and to be supported in their move. This to me is a Success Story! Thanks for sharing sis.

    • Lisa
      January 5, 2012 at 7:24 pm

      Never say never, you have to stop and think about what is best for the individual. You are not “putting them away” you are letting them grow.

  21. Rob McLean
    January 5, 2012 at 4:08 pm

    Good story. My daughter is 13 and I wonder whether it will be better for her to live with us as long as we are able to care for her, or whether she we should look at a group home. Is it a cop out for us to even consider it. My daughter is severely autistic with significant cognitive deficits, so I wonder whether she would even qualify for a group home. We also have a son, 11, who is not autistic and is starting to ask a lot of questions about the future. If anyone knows about the situation in Florida where I live, I’d love the input.

  22. Katie Marshall
    January 5, 2012 at 4:23 pm

    I live in the Washington DC area and have a 12 year old with Autism. This group home sound wonderful- thank you for sharing. I am curious, does your brother have some kind of employment?

  23. Candace Jones
    January 5, 2012 at 4:26 pm

    Thank you for for telling your story . I have a son with autism and found a place for him alittle over a year ago. He is 21 now. Gradutrate in June . After grad he will attend a adult day program . You weren’t kidding when you said it’s a transison for all. It was very hard for me to let someone else do the day to day things for and with my son. It was hard for my son as well. My oldest son told me to think of it as if he were going off to college too. We are close about 15 min from Thomas. Can see him and take him whenever we want . He share a home with 3 other roomates with 2 staff 24/7 . I have seen my Thomas grow in many ways sents he’s been there . I am my son’s legal guardian for now I am thinking of turning it over to his 2 brothers . Thomas is well care for and has everything he needs . for those who haven’t put your child in a resdential home the longer you wait the harder it will be on all of you . Most places haveing a waitting list to get in. If your child has a supports cordnator they could help you with the trainsions and find the right place for you and your child and the funding as well to pay for it. My son lives in New Brighton Pa in one of Maguire Memorial resdential homes. Maguire memorial is run by Nuns and priest . They have a web site maguirememorial.org for anyone interested in checking them out. I wouldn’t leave my son to just anyone . I put placeing him off as long as I could . I thought he should be with family forever . But as i am getting older and he gets older I couldn’t put that on my other 2 sons to take care of Thomas and have there own lives too . I raised my boys all on my own . Thomas is my middle son . The oldest had to grow up fast to help out and the youngest took took on his role once oldest went to college. Wanting the best for all my kids I had to face the fact that I wasn’t gonna live forever and who was gonna take care of Thomas . What if I were in accident or hospital my other 2 sons couldn’t take care of Thomas . As hard as it was , I had to do something . When Maguire had an opening and my youngest was gonna grad from high school and I couldn’t get the help He needed to come into our home and help us . Haveing him in this home he is taken care of and safe . At first I thought it would be tempory he wouldn’t be there permentley , but as time has gone by as hard as it is It is the best for him and for me . I come to realize that . There is more funding for your child in a place like maguire memorial than there if you keep them at home . we lived in a rual era all his life , there wasn’t much for him around there nor was there the help for him . My older son when he went to college he moved to pittsburgh pa , and when he learned of maguire memorial my oldest bought a house near the airport so he would be closer to magurie and then when my youngest grad and went to college he pick to go to the same one my oldest did in pittsburgh well that left Thomas and me 4 hours away on our own so I decided to move down too and This way we are all still near each other . Thomas seems pretty happy now and has settled into his routine and him liveing away from me. I have taken back some of my life whats left of it . My kids are my life always has been sents the day each were born and will always be that way . I had to do the hardest thing any parent has to do that is letting your child grow up spread there wings leave the nest so to speak of. Even my son with lower spretrum of Autism deserved that . I am a phone call away if he needs me and a 15 min drive . When I am gone his brothers are close by for him .

  24. russell Marker
    January 5, 2012 at 4:59 pm

    Great story!! I work in a group home with kids, and most of them have Autism. I couldn’t have asked for a better job… Love it!!!

    • Joanne Tallent
      January 5, 2012 at 6:29 pm

      Russell, Thank you for all you do! My son isn’t in a group home….yet. But he may be someday.
      As a parent of an autistic child, help from family friends, community and even strangers is a blessing. I wish you the best as you take care of your precious residents.

    • Noreen
      January 5, 2012 at 6:33 pm

      Nice! So good to hear!

  25. Carla Tee
    January 5, 2012 at 5:09 pm

    I am happy that this woman is happy with her decision. I however disagree that this is a good fit for everyone. My brother was diagnosed in the 60’s…when NO ONE knew what autsim was… is ..or how it would impact his life. Seems not much has changed..sadly enough..My parents had Dr after Dr try and convince them that moving him into a “home” was the best for everyone..They told them to “let him go”..they could take care of him better than anyone..including them.
    Thank God they didnt listen..He is t he greatest person I have had the privelage of knowing..I myself am a better person for having him as a brother..I would not be the person I am today..
    I realize we are talking about two different situations..age differences and all..but when I read some of the comments it made me angry. It seems to me that different people cant wait for the “relief” that woudl come from having their loved one leave..
    I know it is frustrating..aggravating..and sometimes lonely…but just imagine how the person with Autism feels …
    As for the comment from the person who was told their child would never graduate…dont believe it..My brother went to a HIGH academically challenging HS..then went on to college and studied accounting..got his degree. Now he works part time at a grocery store, making very little money..but I believe he is happy..One of the reasons I believe that he is happy is because when he walks in that door he comes home..to his family…
    ANd let us remember…”Allison” is a lawyer in a private practice. She has found a “beautiful” home for him. There are alot of autistic children/adults who arent so lucky to have wealthy relatives. I am sure others end up in much more dire situations…
    I just believe that family…yes family…comes FIRST. My father on his death bed asked me if I wanted to take care of my brother..that he wouldnt look down on me or judge me if I said ‘no’..My response was “hes my brother..of course I will take care of him”…BUT thats just me..

    • Joanne Tallent
      January 5, 2012 at 6:32 pm

      Carla – yes, not every solution someone finds will work for someone else. We’re all just doing our very best.

    • Allison
      January 5, 2012 at 9:47 pm

      Carla, you are right that it’s not a fit for everyone but you misunderstood my article. I did not find Adam’s home. The parents of the boys who live in the house (along with an instrumental large support network) found it. Also please don’t make assumptions about my wealth. It is discouraging for other families when you make such false statements. I dream and I pray that one day I will be able to financially support my brother. However, as I explained in my post, I was a mere law student when Adam was getting ready to move into his house and not a working professional.

    • Guillermo A. Arce
      January 6, 2012 at 2:27 am

      I agree with you 100%, sending a child to a home amounts to institutionalization. I am working very hard to ensure that my little Andy is not institutionalized in a home. Just because the cage is golden doesn’t stop being a cage.

  26. LGLK
    January 5, 2012 at 6:14 pm

    My son is 5 and autistic and has an 8 year old brother. I can only hope that my younger son will reach a point where my older son will not have to devote much of his time taking care of him, or me for that matter. I know it’s inevitable in many ways, but I really truly hope he will be independent enough where he will be able to live his life without depending too much on his only brother. Thank you for writing this. It gives me hope.

  27. Janet
    January 5, 2012 at 6:26 pm

    Thank you for sharing your story. It made me cry and gave me hope for my son who will one day, I hope, be in a similar situation..close to home but living independently with a support staff and peer group. I loved the picture of the two of you. God bless.

  28. angela
    January 5, 2012 at 6:53 pm

    That was a wonderful story..I only wish that I too can have the freedom and my son the independence.. My son is 24 and we have been waiting more than 6 years for a house along with his peers, here on Long Island.\The wait list for housing continues to grow, and the line continues to grow. This line is in a stand still, and I am really concerned that housing will never become a reality for us.
    It’s a shame that my son can not get housing along with his peers, due to budfet cuts.

  29. Jill
    January 5, 2012 at 7:09 pm

    Thanks for sharing :)

  30. Carmen
    January 5, 2012 at 7:57 pm

    Thank u, I just had my son move to a group home with two other Autistic teenagers, I am going thru the same emotions, but now he is happy to be there, I agree the best of both worlds. No one knows what Autism can do to a family; unless you are that family. Thanks for sharing.

  31. Roxanne Witt
    January 5, 2012 at 8:04 pm

    As the mom of a daughter with autism, who has been living in a group home for a long time, I was very moved by this article and am so grateful you posted it. The school situation and my family situation was not good at all when she was young… I fought for her tooth and nail and still she wasn’t getting services or education she needed. I made the hardest decision of my life when she was just 8 years old and moved her to a group home… she is now 28 and has flourished! She had excellent schools/education when she was younger and the group she is with never stops teaching her and stretching her. She now goes to a developmental workshop every day and is thriving there too. I lived quite a ways (240 miles) at first, then after going through tremendous upheavals of her father leaving, then losing another husband to death, I have been fortunate to live within 15 miles of her for the last 10 years… I see her all the time and am involved in all the programs and processes of her life- I have always been but it is much easier now. She, as Adam, has the best of both worlds… she knows she is loved and cherished by her family and gets to see us often and she is well taken care of and enjoys living where she is. I thank God every day for the people that work with her- for their love and devotion to making her and her “roommates” lives better all the time.

  32. Allison
    January 5, 2012 at 10:00 pm

    Thank you everyone for your kind words. I am excited to work with Autism Speaks on their housing policy initiative in the upcoming months. I understand and respect that each person has different needs and what works for Adam may not work for you, your child, your sibling or your friend. That is the nature of autism. There is no one size fits all approach. However it is important that we all work together, support the cause and never give up.

  33. Guillermo A. Arce
    January 6, 2012 at 2:24 am

    I am hopeful that my little Andy will stay home with us and, when we pass away that he will still live in his home with help. I just don’t have the heart to put him away in a home but, only time will tell. He is only six years old, still working in getting him fully potty trained and, if we just can keep his clothes on, instead of being naked or in his underwear in the house, I think we can handle the rest.

  34. January 6, 2012 at 8:11 am

    thanks for sharing! what a great story.

    My brother actually moved in with me for 8 years before he moved in to a group home. The transition in to my home was hard for my mom. The transition in to a group home was hard on me. My brother is also about 5 miles from my home. It is nice to know that I can pop in whenever I want. He continues to come visit for sleepovers a couple of times per month.

  35. christee
    January 6, 2012 at 8:26 am

    First of all this story gave me hope. I worked in a day program that was not so great. Many days I went home and cried for them. Please parents need to go to homes and programs unannounced. Many things that happen and are never told to family’s. I agree with fact that not everyone has the money for the best care. We had family’s involved and they had no clue because there children could not speak or just didn’t tell for some reason. I was a single mother with no help that needed to keep my job but in the end it was to much to deal with. One person speaking up does nothing to help them when everyone else is on board with what is going on. Parents also check up on the employee turn over rate. Working in group homes and day programs takes a special type of person. You have to be able to look past the issues they have no control over and just show them love and respect.

    • christee
      January 6, 2012 at 8:33 am

      I did not post this to scare it was to inform you of the other side.

  36. Virginia
    January 11, 2012 at 12:40 am

    Thanks for sharing! very moving could not stop crying of joy for you!
    Take care and hope all goes well with all of you specially Adam.

  37. Deborah Wertalik
    January 27, 2012 at 4:51 pm

    So sad! Was the mother ill? Is that why she put him in a group home? He looks so young like 20’s or so to be on his own my heart breaks for him!

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