VJH_8372I just read a blog post where the author was asked to list the hardest thing about autism, and she said, people.  For me, the hardest thing changes as time and life change.  A long time ago, it was other people not being kind, instead very very judgmental. Later it was hitting and pinching.  Later still it was loneliness and so on.  Today, it is fear…pain. Fear of giving up, pain of letting go.

Many people have heard the song “Say Something” by a Great Big World and a cover by Pentatonix.  Most see it as a romantic or familial toned song.  I ask that you close your eyes and listen to it again, trying to imagine yourself as a mom who has to give up her young teen child (or any age, for that matter) to a group home…to live away from his/her family.  Imagine this is the first day of that chapter of their lives.  Imagine the feelings of failure, the guilt that overwhelms.  Think of the sadness, the loss, the dashed hope, the feeling of giving up. Think of them in the new room of their child. Imagine the car ride home with an empty seat in the back…

This isn’t an ‘if’, it’s a when.  It isn’t today, nor tomorrow, the next day, or the next.  I hope it’s later, not sooner, but it will happen.  This happens everyday.  Parents have to give up their kids to a group home.  Before people say something, I do know I didn’t fail.  I know I shouldn’t feel guilty, like a failure, or that I am giving up.  I know I’m not giving up.  I know it will be the best for him.  I also know it isn’t goodbye.  But it is goodbye to life as we know it now, and that feels like enough of a goodbye to me.  I know we can visit; I know we can bring him home to stay with us as much as we would like, but tell that to a mom who is giving up her baby, placed in her charge by God Himself.  No matter what I know in my head, I know my heart will wait until that time comes to start working to reconcile itself to believe what the head says.

On that day, when we are standing in the doorway of his new room, tears will flow freely.  Guilt will overwhelm.  My heart will be pleading with my non-verbal son “Say something!  Please!  Tell me you love me.  Tell me you know I love you.  Tell me we don’t have to do this.  Tell me you forgive me.  Tell me I didn’t fail.  Tell me you understand.”

I know it will be okay.  I know I will be okay.  I have faith in Jesus that He’s going to have it in his hands, have Taylor in his hands…have me in his hands.

But if you ask me today what is the hardest part?…. knowing this is my future.

 

*Some time after this was published, I received a fairly mean spirited response.  You can see my post addressing it here. You can also follow the blog by liking my facebook page, The Stay at Home Soprano

Sarah

As always, positive comments are welcome. Negative hurtful comments will be trashed before I can even finish reading them. I have many readers who are emotionally vulnerable, and I will not post comments that will further harm.

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Sarah

87 Comments on The Hardest Thing

  1. My non verbal son was almost 40 when he went into a group home. He started one night a week and increased it and now he stays there 6 nights a week. I would suggest picking a house close to home. His house is 6 minutes from mine and my husband and I go down every day and I run in and say “HI” He seems happy there. He is happy to come home every weekend and happy to go back. I never thought I would know if he was happy or not but now I know. I am almost 80 and I realize I am no longer able to have him at home full time

  2. Hi Sarah,
    My son Sean has lived in a group home for almost 2 years now. He was 12 at the time. It was the most difficult thing I had to do, and I still wish he could live with me full time but he is happy and getting the structure and supports that he needs that I could not provide here at home. I am still his mom, he is still my son, and he is happy to see me when I come visit him or bring him home for the weekend. I think I will always be a little sad but it does get easier.

  3. My non verbal autistic son is 10, and I’m looking at the same thing. I understand every word of this. Thank you for putting it into words.

  4. Beautiful article that captures one of the biggest worries and uncertainties parents of special needs kids face: what does the future hold? No one can know. As the mother of a 27-year-old son with autism, I can tell you that even when there are years to go before that fateful moving day, you need to start your homework (something I wish I had known then, but who has time?) We found out there’s a number of options out there – some good, some not – and it’s difficult to get reliable information and even more difficult to find people who really know the system and can help you. But that early start does allow you to become familiar with the ins and outs of special needs housing
    wherever you may be living. And the best part for me was that it helped with that feeling of not knowing and helplessness. Becoming an expert on the system helps you become your child’s best advocate.

  5. Thank you so much for writing this post, and let me offer you some comfort by sharing my own experience. My brother is 26 years old and has Pervasive Developmental Disorder on the Autism Spectrum. When he was 10 years old, my family made the decision to put my brother in a group home, and it was heartbreaking. Our family was broken and wounded, and we felt so weak for not being able to provide the care my brother needed and deserved.

    It took a long time to get used to my brother not being home every day. We missed him terribly, and we almost gave in to the despair and brought him home for good time and time again. We managed to keep our resolve, but not without tears shed.

    But now, sixteen years after one of the most difficult decisions of our lives, we realize it was the best decision we could have made, both for him and for us. With round-the-clock care, my brother has been able to fluorish, and with therapy, he’s been able to overcome so many of the idiosyncracies that tormented him and us. He enjoys his group home so much, and I don’t mind bragging that he’s a favorite among his housemates and his therapists. He comes home every other weekend, and our relationship has never been better, and our family has never been closer.

    I’m telling you this because sixteen years ago, we were so hopeless. We thought we had hit rock bottom, and that there was no way to rise again. We couldn’t see God’s plan. But looking back now, had we known how much my brother was going to improve and how much he was going to enjoy his life, we wouldn’t have despaired. Our family is closer now, and my precious brother is happy–and that’s something that we feared could never happen. God knows what he’s doing.

    • Thank you so much. Every time I get a comment moderation email after Autism Speaks features my blog I think, ‘Oh boy what do I have in store for me today?’, because there is a huge uptick in really mean comments.

      Our road is at the spot now where we make this decision. I wrote this post years ago,and now with the actual experience, I can say the feelings in the post are fairly accurate. Thank you for your kind words. The truly were and are uplifting and fill one with hope. ❤

    • Where are these group homes ? My good friend lives in Tucson Arizona, his son is 21 years old & is in desperate need of getting him settled in a group home. Doors keep closing on him no matter which way he turns. Who can he contact to assist him with locating a good group home ?! Thank you Sylvia

  6. I am a Program Specialist at a group home. I have a brother with autism. And I am a mother. I can’t speak about all group homes, but I can assure you that there are good ones out there. I do not for a moment minimize how difficult it would be to allow someone else to care for your child. I respect the strength it takes to recognize when you’ve given all you can and need to ask for help. And I keep that in mind every day as I go to work. This is my job, but it is your life. I try to run the group home to provide the best opportunities and the best life I can offer the people living there. Because if it were my son, I would want that for him. I am a mother. I feel what my son feels. I know it is the same for you. Just know that there is a group home out there that will take care of your son and he will be happy. He will be safe. And he will live a rich and fulfilling life. You will find that place when the day comes. I see first hand the strength it takes to be a mom of a child with autism. And I admire you and all moms of children with disabilities for all that you do.

  7. This blog was incredible and definitely inspiring. This past summer I had the blessing of working at a group home. No, it wasn’t easy but it was so worth it. Unfortunately, due to continuing my education, I’m not able to work there during the school year. I miss everyone so much and love to visit them whenever I have the chance. Two of the residents I felt so attached to and connected with both had severe autism. Every day was a challenge, but I thank God that He gave me this time to get to know and love on the sweetest kids. That said, I definitely don’t know what it’s like to be a mother, let alone a mother with autism. But I can see, through this one blog, your heart for the Lord and your heart for your child(ren). So, thank you for sharing. After working at a group home, I’ve been wondering how their parents or guardians feel and I only hope and pray they care at least half as much as you do. Thanks for sharing your faith in Jesus; it’s super encouraging to see that even on the tough days, He can bring us so much comfort and joy. Praying for your future and your son’s bright future – it’s going to be a good one!!

  8. I know that feeling so well. My son is 28 and still with us. I just feel he isn’t ready to go yet. Everyday gets a little bit better but then he will back slide a bit and I wonder if he will ever be ready. I’m worn out.

  9. My wife and I put our 17yr old son in a group home. It was a very difficult decision we made but we had no quality of life or a social life of any kind whatsoever, and our house was being destroyed. He has been in a group-home for 5 years now and he is 22. However we are constantly fighting with the group-home agency to improve his living situation and hire good knowledgeable and motivated people. It is very stressful dealing with the agency that runs the group-home. We do bring him home on weekends and take him on short vacations, but his behaviors have gotten worse and he now has worse fits and begins to hit us and injure himself. The problem with the group-home is lazy and under-trained workers. They prefer to sit on the couch and watch TV and neglect the autistic residents. We believe this creates more emotional and behavioral issues. They did have a great crew when my son first moved in but group-homes have great turn-over. Rarely do I see anyone staying for more than a year or 2. Also when some of the good workers leave, or the ones that my son likes, I think he gets depressed and asks about them. My son is verbal but has mental retardation with autistic spectrum characteristics. He cannot control his emotions and has a very short fuse. He has severe OCD and ADD as well. He obsesses with his toys.
    In any case I just wanted to say that the group-home was a big letdown, and others tell us that most group homes are the same way. We have issues with them bathing him regularly and cleaning him properly, clipping his toe nails, cleaning his ears and things of that nature. Also he gets frequent UTI’s because they don’t clean him well down there.. The food they give him is a discrace. High fat low grade red meat and processed food which is against state regulations. We have reported them to the Medicaid Coordinator agency and the state, but noone seems to care. The agency CEO keeps saying he will improve things and they have replaced the House manager a few times, but nothing ever really gets better. The sad thing is I hear the same thing from other parents that have their kids with different agencies and group homes. It’s been a constant battle fighting with the agency and it’s almost as stressful as having him home 7 days/week. I can’t really complain though because we can get to go a movie or a restaurant and have a little bit of a life, even though we spent a lot of time visiting him to make sure he is taken care off and eats properly. Every time we visit which is usually 3x/week (plus we have him home on weekends) we take him out to eat some decent food, instead of pasta with meat sauce or meatballs or Mac & Cheese every time, or hot pockets with hot dogs or frozen pizza. The main problem is none of the workers really seem to care. They are happy to let him stay in his room and vegetate, when my son is actually very social and likes to talk to people and try to get him to play games with him . They are just a lazy bunch that are there for a paycheck, and will lie when my son gets hurt to cover their butt and protect the agency from any liability. We are looking for another group-home but it may take years. Just be aware that when you place your child in a group home you need to stay on top of that agency for as long as you live. It’s delicate work because you get on their case a lot or yell at them, then they avoid you and are not willing to work with you. Or if you report them to state agencies like we have for unexplained injuries, missing medical appointments, and poor diet, they get mad at you and do not cooperate or treat your son any better or they way they should. It took us 4 years to report them after we gave them many chances to improve things, but it did not really do any good and we were faced with a retaliatory attitude from the agency. Another thing you also need to know is that the State supports these agencies and covers for them, because they license them. They 2 work together and noone every really gets blamed for anything unless it is very very serious and you get the Police or the DA involved. But as far as the “Justice Center” and the County Mental Health Association go, they are a joke and seek to help these agencies and keep them clear of any fault or liability. My son’s group home has taken away his 1 on 1 and they no longer have a 1 for 1 ratio. This made things even worse and my son is now getting less attention (close to 0 really) except for a shower they give him a couple of times a week (used to be every day). So he gets depressed and retreats to his room all day because noone is engaging him. If they just went to talk to him or take him he would jump out of bed and be happy, but they just let him waste his life away in bed, when he used to be very active and run around with a smile. So be ware of crappy Group Homes. They will rise your blood pressure like you won’t believe. For us it’s a full time job dealing with the agency, pointing out all the wrong things, having meetings with them (nothing ever comes out of them – they just nod and make excuses), and visting him as often as we can because of the lazy staff and their cost cutting initiatives that are affecting our son. God bless.

    • I’m so sorry that has been your experience. That sounds awful, but you sound like amazing parents. This isn’t an easy decision for any parent, and I don’t see you as selfish at all. Here in Oregon, I have been able to see a bunch of great homes which has been very encouraging. I hope that something will present itself to you soon. I know how dealing with the government side of things can be so frustrating!

    • This is heartbreaking to read. I can only imagine how difficult it is for you, your wife and your son. Would you tell me what city you are in in New York as I have a contact there who may be able to help you.
      God bless

  10. You have to give up your child to a group home? That is something so unimaginable to me. My severely autistic, non-verbal son will never know what it is like for his mother to abandon him.

    • I normally don’t approve negative comments to appear on my blog because I have many readers in a fragile emotional hard place, and I see and know negative comments as very harmful. They, in my opinion, serve no productive purpose other than to let the commenter boast and make them feel falsely superior while exercising falsely satisfying judgement. That aside, I felt the need to respond to this as most of my negative comments revolve around this line of thinking. On to my response.

      I am honestly very thankful that you will be able to keep your son with you forever. It is a blessing and I pray that you will be reminded of that blessing daily. I am not in that same place. I wish I was, and I wish you could see how hard our family and I as a mother tries desperately to keep him with us as long as we can. I hope you realize that the picture on this blog post is of my son…5 years ago. Before puberty which made him grow to over 5 feet and over 115 lbs. He was always on the aggressive violent side, but since puberty has set in, his violency has dramatically increased and has on a consistent basis, more than just periodically, become dangerous and injurious. If you want to see a small example I would direct you to my post, http://www.thestayathomesoprano.com/2016/03/21/autism-not-make-bad-person/, where I include a picture of just one of the bruises that was on my body at the time. I have two other children in my home, one being as little as three. I have to think about their physical and emotional safety. I also have to consider the safety, physically and emotionally, of my son once I am gone. If he stays with me until I die, his transition away to anything else will most likely be crippling. Group homes are not to be confused with cold institutions or asylums. They allow productivity, creativity in expression, freedom, and allow them to feel empowered by a sense of independence. I do not come to this idea of placement in a home lightly. I have exhausted every thing I have access to. Our last resource is our behavior consultant that we hire, at no small expense, as well as personal in-home care workers to help us set up our home to get us to be able to provide as much of the structure we can compared to the school he goes to, which has more staff, energy, and knowledge than we do. My house is locked up with about $500-$600 in locks and specialized safety equipment. When he has gotten away from home, it was because he can hop over our 6 foot fence, and sometimes he left right after getting off his bus. In response, we have obtained bids for replacing it with a taller more secure fence…The cheapest bid was $9000 because we have a larger back yard. When he has run off, I am always with him because I realized within 30 seconds that he was out, but because of his size, without help I am unable to get him home safely. This is where the police have had to help. They are amazing people who are villainized and underappreciated. In one occasion, I have had to throw myself out in traffic in front of cars to protect him. Yet when many have advised me to let go and place him in a home, here I am, still with him in my home and each day just fighting for one more. I do not come at this future decision flippantly or lightly. I have a handful of experts, some with the government and some private, who see my situation and echo my concerns and my heart to keep my son with us as long as possible, but also see the reality of the situation.

      You see, just because you have a child with autism, doesn’t make you an expert on anyone else but your child. Severe and non verbal can cover a wide range and life situation. It just ins’t fair or kind to judge. It especially isn’t kind or fair (to put it nicely) to chastise and condemn others with insulting verbage (“abandon”). See, you are only abandoning your child if you drop him off and never come back. Just like sending your children off to college isn’t abandonment, sending your child to a safe empowering living environment to gain an improved life isn’t as well. I have given my all physically, emotionally, socially, and mentally to keep my son with me and my family living under one roof. I have given everything until I honestly thought I can’t go another minute. It is beyond unfair to judge or use hurtful words to say I am abandoning him. I would caution you to think before you comment in the future. If you think there is a possibility that a positive comment you make can be miss-interpreted, use some emoticons at least.

      • Hi
        My daughter attends a residential school. I didn’t throw or have her placed for any single reason. I did do it for her because it’s not about me. It is about her being as Independent as possible and not just put out into the world after I am gone. How fair would that be to her. I am here now. Driving the bus that guides her toward her Independence. That is our job as any type of parent. As much as it doesn’t seem natural, it is best for her. She is what matters. I see how proud and happy she is of major milestones. She too is non-verbal, but it is written all over her face. I cry and want her home everyday even after 6 years, but again, it’s not about me.
        I send all parents who love there children enough to always do right by their child strength and love.

        • Tina,

          I have identical twin sons who are 20 both non-verbal. My husband and are haven’t slept in 20 years.. Lol. Every time my sons fight to the kill we say it’s time to let the go. Every time one of sons wakes us up at 4:30am physically demanding to take a bath ..we say it’s time to let him go.
          Every time the other twin etc etc etc……..we say it’s time to let him go to a group home. My head knows its time, but my heart doesn’t. I do feel selfish because I want to sleep past 6am, I want my master bedroom back since we had to separate the boys, I want to spend time with my daughter who is a senior this year, and did I say SLEEP! I know my husband and I are the only ones to make this decision. As I sit here sleep deprived and crying I hear one of my sons is laughing in the bath. My other son is listening to the Beatles on his iPad, and my husband (who is exhausted from being up since 5am) is making breakfast. All is good this minute, but in the next minute there may be screaming etc etc etc!
          How do I make this decision? Yes, I do know my sons need to be in a group home. I’m just terrified of so many things. We have the resources to do this, but I can’t. When they start school on Monday I will be able to sleep after not sleeping all summer.
          How do I get over feeling I’m being selfish TO let my sons go?
          Please no negative comments.
          Thank you,
          Robin

          • Robin,
            I am so sorry. I understand the sleep thing, but I cannot imagine autism times two and at 20 years. That must be so hard! Feel safe in knowing I moderate each comment and will not allow negative comments to come your way. I only allowed the above negative comment just to reply to it. It is a common sentiment (insult) that almost every one of us in this spot have come up against and I wanted to defend and stand up to it.

            I know the selfish feeling, but please try to believe you aren’t being selfish. We have a behavior consultant who also runs a group home and she has helped to ease our fears and has shown us the positive things that happen after they are placed. Their lives don’t decrease in quality and happiness.

            You are a good mom. I know it is borderline insanity inducing stress you are going through and have gone through for decades.

            You don’t have to settle on one home forever, and it might take a few changes to get the right fit. You will remain in control of your boys. They will always have the option of staying the night at your house when you want, and you will be able to see them as much as you’d like. Sometimes it helps me to think that if my son was typical, I’d be sending him away to college and would see him possibly less than I would my son in a home. It doesn’t take away the grief, but grief will eventually fade a bit in time. Prayers and hugs to you! <3

  11. Hi Sarah This story Hit home
    my Husband and i have been doing foster care for a long time know .We are on our 13 set of kido’s
    we have 3 know we are opting to adopt but our 4 who is full autisum with pica and seizurs and licks him self and power naps then up for 24-48 hours and crashes during the day never sleeps at night
    our oldest is 6 she has rad and our soon to be 3 year old is following in the others foot steps . Its like how do we make this desion keep all 3 or split them up our autistic he does very well with a one on one couple. we have seen a huge improvement since he has been on a medication for seizurs . he says words very softle when there is only me or one other person in the room. happy kisses hugs up and dadda so we are stuck in a hard spot . but after reading all the story’s and coments seems to make me realize im not alone. thanks for opening my eyes more about this whole ordeal

  12. I just read your article posted on Facebook by Autism Speaks (I think)

    My son Jamie has been in residential care since he was 8 years old. I am a parent who still has been unable to resolve what is in my heart with what is in my head. Yes, you wrote that last part. I wish it was a one time only decision, instead I feel like its choice that I make everyday.

    People don’t mean to judge, but it is hard not to feel you need to justify, when presented with alternative options by well meaning people who ask “did you try this?” Of course I did. I think any family choosing the residential option sees it as last resort. We still suffer, we wish it could be different. I still ask myself “Is it because I couldn’t handle it?”

    It was so great to hear that others have been through the same thing. I have searched for other Moms like me. It seems so difficult to find them and feel their support. I help others as an occupation which in turn, helps me.

    Thank you again for writing about the fear that is experienced.

    • Thank you so much for your encouraging words. I have heard from others that it doesn’t feel like a one time choice, but instead a daily decision. A very tough one. Blessings to you and your family!

  13. It is necessary to bring the pain to light, and I thank you for doing this. More of the “hopeful autism” stories are told because we as parents of those who we do not know their future, are maligned. I thank you for your courage of sharing the raw stress of the unknown and day to day challenges. I have 3 sons with ASD, my eldest exhibits self in-injurious behavior, he will soon be 10. I don’t know what’s coming. We just do our best with the techniques we have learned to calm and soothe, and school routines to encourage growth.

  14. I sit in tears reading this post. I don’t know why I am crying. Partially because I understand your struggle, and partially because I also regret feeling this way from time to time. I came across this page while googling for group homes for kids with special needs. I really admire your strength not to give up and to fight until your last breath. Its always hard reading others stories of their children with special needs. I find myself putting my situation into perspective and feeling like I am simply on a pathetic guilt trip with my mediocre struggles. I have an almost 4 year old with autism. Limited speech, severe communication delays both receptive and expressive. Not making any progress at school. Home is manageable in a structured routine of me constantly chasing and cleaning behind him. Saying it aloud doesn’t sound that bad. Until I factor in I am a single parent (I mean what man wants to take on this baggage right?), so more kids, my career and what I wanted for it is out of the question. I struggle with the thoughts of feeling like I am sacrificing everything for…. Guess ill just suck it up and be a better me. 🙂

    • I totally understand. Autism can make you feel so unacceptable or wanted. That’s tough. Saying what you said out loud doesn’t make it sound easy. And, being a single parent throws a huge wrench in it. You are a lot stronger than you think. I am not sure where you are located, but there is a plan that is through the federal government (it’s called the K plan where I’m at) and it is a tremendous help. It also pays for respite care, where you can hire people, completely paid for by the government, to come in your home and take the responsibility of your child, cleaning and all, off your hands. It also will pay for extras and resources that insurance won’t even look at. I recommend that you look into the disability services in the county you are in and get a case worker. Through the worker you can access the k-plan and it will also allow you to hire a behavior consultant. They are experts on making your home a place where your child and you can function much better. Schools are tough. So many times, they won’t listen and more. I’ve had my fill of that stuff. You are not on a pathetic guilt trip. Autism at any age is hard. No guilt should fill you. Trust me, as a mom who has a severe situation, that I don’t consider your situation to be less worthy of recognition than anyone else’s. Including mine. Give yourself grace. Pray often, if you are a praying person. I will keep you in my thoughts and prayers. I remember being the parent of my son when he was 4. My heart goes out to you. Much, love!

  15. I wrote an entire novel on the topic of a family reaching the point when the move to a residential program seemed necessary for their non-verbal autistic son/brother. I did a great deal of research I to write this book, and the stories told to me by parents, by doctors and social workers, and by siblings, were astonishing. Thank you for sharing your thoughts about your journey.
    Stasia recently posted…My December reading list…My Profile

    • Our family has experienced our grandson having to live in a group home at the age of 11. He was too big and strong, biting, pinching and, at times, injuring himself. He had very erratic sleep, somtimes not sleeping more than an hour or two and disturbing the sleep of his younger brothers as well as his parents who had to function the next day. He goes home at least 4 times a week for a couple of hours. He is non-verbal. We see him about once a month and, once in a while, he’ll put his lips on my cheek or his cheek on mine. I live for those few seconds I feel him close to me.
      He will be 14 in a couple of
      months. It still hurts deeply that he can’t live at home. It is a hurt that his parents carry daily. Me, too. He is thriving. He seems happy. Adolescense is coming – a whole new “ball game.” Unknown.
      I just heard of your books. I’m not certain I can read them.

      • This string is so profound and important. The shape of the future for children with autism becoming adults with autism (and what this means for everyone else in the family) is a part of the autism experience that is insufficiently discussed. I keep returning to this comment feed amazed by the courage and grace shown by so many who have shared there thoughts her. Thank you, Sarah, for discussing this “hardest thing.”
        Stasia recently posted…My December reading list…My Profile

  16. Wow. So powerful! We are going through this exact same thing and to say this hit home for me would truly be an understatement. As I sit here with tears streaming, knowing we are a small minority that have to think about this certain future, I’m with you. It’s a topic that has recently been very heavy on my mind as my son is getting older and not “getting better” – he’s perfect in my eyes and I can’t imagine a time in life where I’m not the sole caregiver for him. I’m terrified of him going somewhere where they will just change pull-ups and feed him. I’m seeking out all options that will allow the best quality of life possible. Thank you for posting so transparently. In such a bizarre way, it brings peace to know that these fears and concerns are normal. That even though our children can’t tell us, they love us and its going to be ok.

  17. Sarah,
    I have a four year old (almost five year old) who is severely autistic and nonverbal. When I read your post (I’ve read it multiple times) I felt like I wasn’t alone anymore. I don’t know any other moms personally who have a severely autistic child and so many times the people in my life try to force me to live in “lala land” and always say things will get better as she gets older. But from what I see, things are only getting harder. Aubrey is very aggressive and hurts her sister and herself, and even us adults a lot. I feel so alone because I feel like no one understands how hard this life actually is, but articles like yours remind me I’m not alone. So thank you so much for sharing the reality.

  18. I read your blog about the hard decision. We are there now. Our son will be 18 in 6 short weeks and shortly after will be going into a group home. Part of me feels guilty and the other part feels relieved. Its been hard all these years. Puberty has caused him to become aggressive. Meds work for a little while then they stop, the behaviors return and its back in the hospital for them to be adjusted. Noone will watch him so we haven’t had a family vacation or date night in years. We can’t have parties or cookouts so it can be very isolating. He is still my child, though, and I have spent the last 18 years being his mom, nurse, advocate, and protector. Its heartbreaking to know I won’t see his face every morning or tuck him in every night. Thank you for letting me know I am not alone.

  19. You are amazing. You are whole. You have done nothing wrong – now and in the future when you do have to place him into care.
    You are not alone, I am going through the motions of putting my son into care. As one mother to another…please know that our love for our babies will never die. Even if everything around us does. Here for you now and always xx

  20. I am a mom of a severely autistic 14 year old boy, and I truly know what you are saying it is the hardest thing I have ever had to do,placing my son in someone else’s hands to watch over. But it has been four years now and I can honestly say it has been the best thing for him. He is getting to do so much more and has made so much progress since placing him at a Human Development Center. The staff are very loving and keep watch over him so well it is reassuring to me. Plus I now have the rest I need to be able to have the energy to oversee his needs. Just because you are no longer living with your child doesn’t mean you are not still mommy.

  21. Dear Sarah –

    Thank you so much for writing your post. About 9 years ago I was in your shoes, times two. I have two autistic sons. My oldest is now 21 and nonverbal. My youngest son is 18 with limited language, seizure disorder, and a boat load of behaviors.

    I could feel the pain in your post. I wish I could that the pain diminishes with time. When a mother has a child, she is prepared that one day her child might go away to college, or that one day her child might get married, have children, and might even move away far from their childhood home. But there is nothing that prepares a mother to make the brave, difficult, extremely painfully and necessary decision that you and I have made.

    I wish I could say that each day gets easier. In some ways it does, but in others ways it does not. My oldest just moved into an adult supported living home. It is a bit like ripping the band-aid off all over again. He’s having a horrible time adjusting and I’m sure misses his brother who still lives in the children’s group home that they shared together for 9 years. I keep telling myself that one day it will get better. And, I know that in some ways it will, but in other ways it won’t.

    You’ll never not be your child’s mother. You’ll always have that dull ache in your heart wishing that it were different. I commend you for your brave decision, because I know exactly how difficult a decision it was for you to make.

    Sending Love To You and Your Family,
    Sylvia Henderson

  22. I don’t know if this will help anyone, but my husband recently found a non-profit company called Rise Services that sends people in-home to help with all manner of disabilities . It’s like they bring the group home to you. I believe they are located in Utah, Colorado, Arizona, and Oregon. I hope that there are other amazing people out there that can help as well. Their website is. http://www.riseservicesinc..org

  23. Sarah and family pra yers Coming your way for what you have Been going through .. I can just imagine and that when you arrived to making that final decision how hard it must have been to let go …. to show all of different ways of how things can be lived out the rest of your lives with much love still even know things have been let go to a point……………………………………………….
    .

    and I love that song that you picked because it’s a beautiful song I loved it… myself and my family can relate To your story your life ..for we have talked about this about our severely disabled beautiful daughter a few times…………………………….. now that my Health has changed my husband To has changed a whole lot to a horrible accident 5 years ago at his work..
    but we have not taken that next step we are all working together so far and get in home care that helps a lot and Our daughter will be 31 in January.. in the past five years her behaviour have been a bit out of control but the medication changes have helped but I can not lie I will not lie it is not easy aT All …… so I reAd your story listen to your song just want to let you know you are in our prayers because we cannot sit in judge there’s only one person that will judge us our dear Lord …
    we don’t know what our future holds our soul if our daughter will be able to stay in the home with us tell her end or our end … we will keep her with us as long as you can ….. we are also blessed with three other children that are younger than her and she is blessed with two sisters and a brother…and they have grown and learn in stand by her side just as us and we are very proud of them for that so we know it’s not easy for them.either..but it’s made them much stronger sisters and brother for sure I can say about the other three children who grew up around Their sister who was severely disabled and to be with us and watch us teach and learn and love more and more and also learn about the sacrifices that we all have to do but in return. Love that is given back is uplifting and just incredible a blessing…. our other children are two girls and a boy the girls are 29 Beautiful step girl ..24 and the boy 16..and they all have something medically going on too .. but don’t we all when it comes down to being truthful… we get by one day at a time… all of us often are ask …. how do you do it along with everything else for us it is our life and we take it one day at a time and we look at the blessing not as something that can’t be done as far as family goes but everything has its limits as we all know… anyways. So much more to our story but we all have our stories to be told thank you for sharing your true story with us wanted to share a little bit of our story with you know that you and everyone else are in our prayers daily…. just wanted to let you know we know what your feeling and going through when our daughter was younger she was a residential student at her school for the blind after she got out she’s been at home 24 /7 also goes to A program daily Monday through Friday and it was a true adjustment but we all have I think Did pretty well…. . just a matter of all sticking together and Getting in home care coming so we can get her breaks and us all need brakes ..so far for us it has been working out its been 8 years now since you’ve been out of the school for the blind.. anyhow just know that there are others out there that have different situations different stories some better some worse… we thank you for sharing yours and wanted to share you Ours and let you know that you are in prayers… and to know that time changes everything and everybody and that you Are in prayers now that we have read your story and we wish you and your family all the best and to have a blessed life… thanks again for sharing your story for we have not reached that point yet but we can truly understand where you were at when you made that decision that is for sure God bless and take care of yourself here…. from a mother of 4 in Maryland ELISA and family….

  24. I really liked the article you wrote, especially the emotional dilemma therein. But why you had to leave him in a group home. Was it for some education for some time only? I understand well the pain, as my son also has ASD. Fortunately he is on the path to recovery and we are expecting the same before next October.
    Regards
    Lalit Joshi

  25. Dear Sarah,
    I accidently came across an article with your “The Hardest Thing” blog post., I was actually searching for some much needed help with receiving home services for my 11 year old son, Justin who is extremely low functioning, non-verbal and autistic. My husband and I have recently been discussing Justin’s future and how much longer we will be able to take care of him ourselves. He has become extremely violent, mostly towards the people he loves the most. Every time my husband tries to talk to me about the future, I cry and say I know what will happen someday but lets just live in the now and get through today. As much as I know I won’t be able to handle him forever, I too want to do everything in my power to keep us together. We had an incident over Christmas that caused us to seek ER crisis care and he was admitted into a facility to help families in crisis get through a period with kids like Justin who are going through severe aggression where they become a threat to themselves as well as others. The facility helped give us suggestions to avoid using “trigger” words like NO and upped and added some medications. They released him after 2 weeks with the stipulation that Behavior Health Wrap-around services would be in place. It’s now June and the agency that assured they could take Justin’s case and staff it still have not followed through. Anyway, I just wanted to say the words you spoke in this article could have come out of mine or my husband’s mouth and are exactly how we feel about our son’s future. Thank you for making me feel like we are not alone.
    ~ Jennifer

    • This just breaks my heart for you! I know that pain all too well. You aren’t alone, and the more and more I blog, I meet other parents just like us. I’ll include you and your family in our prayers. I can’t imagine the stress you have had to endure with that ER incident.


      Sarah

  26. I’m there. My 20 yr old son has been in a state center since March, waiting for a group home to open up in about a year’s time. I visit him every other day. I advocate for his care there everyday. It’s a two hour drive each way. At 20, he is still developmentally an 8-10 yr old. Imagine taking your kid out of your carefully engineered home environment and putting him into a state institution.
    What does he say to me when we visit? When we FaceTime everuday?
    He says: mommy I want to hug you! Mommy don’t go, I want to go to mommy’s house, mommy I’m sad, I love you, mommy come here,…he cries, something he never did. He grieves, he is depressed. And I, I am heartbroken. Trying to recreate for him our home. Trusting he is learning to live without me, accepting his life will never be the same as it was with me. And that he will be ok. I will be ok. Sometime from now.

    • I am so sorry. Right now, I can only imagine what that will feel like for me, when the time comes. I am so sorry that is your reality. We will include you and your son in our family prayers.

  27. This article hits home with me. My son has aspergers and Duchesne MD. Knowing the future is probably the toughest aspect of day to day Life. While aspergers can be managed more so than other aspects of the autism spectrum I know what awaits him with the DMD. I know that he’ll be in a wheel chair soon and then slowly begin to weaken. Just knowing you will outlive your child is a punishment I would never wish on anyone.

    I hope everyone has a great day and continues to enjoy the time they have with their loved ones.

  28. Hi Sarah!
    First off, I would like to tell you that I NEVER comment on anything related to Autism however, I felt the need to reply to your shared post because I am in the same place with my 10 year old son. I have 4 children and two of them are much younger then my 10 year old. He was recently diagnosed with PDD. It took 6 years of clinical help before the diagnosis in December, 2014.
    Before this, I had to place him in treatment foster care (TFC), as this was a clinical recommendation, due to his violent outburts and planning to cease me. My children and I were scared but my “mommy instincts” kept me from the raw reality of WHAT IF? I was able to see my other children change for the worse as we were always on pins ‘n needles. Church was no longer an option, family outings or get togethers with friends and family was a distant memory because we began living moment by moment. Anything would set him off and the behavior battle began. He was verbally and physically aggressive, with me primarily, but wouldn’t hestiate to attempt to attack his siblings. Dinner plates went flying across the room, holes were punched in my walls, throwing chairs etc…. Finally, I agreed with the clinical team and reached out to his biological father for help and who lived several States away. After 1 year of living with his father, my son was dropped off a few blocks away from my home, left to walk with his suitcase in hand. I was shocked, sad, crying and felt so guilty! My son being home again, I felt relieved and motivated of working through this and coming out stronger than before BUT his therapist and psychiatrist warned me of, “It’s a matter of time”. Six months into resuming his treatment, we came to a dead end again with only one way to go. Since his return from his father’s, my son pulled a steak knife out and tried to stab me at the dinner table and in front of my other children. They were screaming, crying and fled the dining area to lock themselves into a room for safety. The police came out and attempted to talk to my son but he wasn’t really sure of the whole situation and it had little impact. Since that day, we were instructed to contact our local police, anytime he was a harm to himself, others or causing property distruction as this might help in getting him placed into a group home. He also is runner! Anytime we needed to intervene or redirect, he would run. I didn’t know what else to do…but realized that his behaviors were intensifying and it was heavily impacting the entire family. Even after speaking with the police, I was told that this is a parenting issue. I politely informed them that their opion didn’t matter but that they simply needed to document the, and future incidents. Few days ago, I was left to place my son back in to TFC until a bed at the group home becomes available. The admission target date is set for later next week. My son will be 4 hours away from home but I know that I am ultimatley responsible for his future and the way things are going now, he will not have a successful future! I felt so many different emotions and guilt is the biggest one, still. I pray to God, I talk to God and I think of my son’s future. It is not MY future but it is his. If I do not place him where he can get the much needed help to strive to succeed, I am setting him up for failure because I am his mom. I do not expect other people to understand, nor do I seek their opion and approval. This is between My God, My son and I. You are not alone!

    Sincerely,
    Katja

    • Oh Katja!

      That sounds so incredibly rough. We have been lucky with the police being understanding, but other “professionals”?…Not so much. It breaks my heart all that you are going through. My daughter loves hearing about new people that she can pray for. We will pray for you tonight. It is really hard when church is no longer an option, and all social activities are off limits, isn’t it? Thanks for commenting! Don’t let anyone convince you that you are a bad mom. Never! There may be times when you may feel like it, but ask God how He sees you. I did that one day because I was depressed I wasn’t like the other moms I would see. I heard him tell me He was proud of me of how resilient and long suffering I was. You are too.
      Love,
      Sarah 🙂

    • I’m working on an option. My son Charlie is 9. he loved my dad’s farm. to keep him out of the group home setting, we are moving to the farm, and trying to make it work out there. My hope is to find other families in SC that want the same thing, and have a cool autism community, lots of work to do, and a few years away from starting the 501 c3. but we our 27 acre farm happens to be right in line with the August 2017 Solar Eclipse, and we are planning a fund raiser to help get things rolling. feel free to contact me if you want to discuss. Jason Langley jason.langley76@gmail.com

      we also think of it every day, but we’re not accepting that his fate is determined without a fight.
      Best of Luck
      Jason

      https://www.facebook.com/SouthCarolina2017TotalEclipseConcert?fref=ts

  29. have lived this time already with my son who is afflicted with cerebral palsy….it is the hardest thing ever done as a parent…..I have 2 other average ability children. It’s been almost 6 yrs and my heart and head continue to battle…have decided I am about 85% happy with where he is at and that I will never be more settled with him needing to be there than 85%. Short of my son being part of some miracle and having average abilities…we don’t use the word normal no one is normal….I will continue to mourn for that last 15%. Some days worse than others some days better than others….that’s been our life for 24+ yrs…its is who we are……

  30. To the author:
    This post is all too familiar. In fact, the very first time I heard this song (Say something) I was on my way to a meeting to plan and figure out residential services for my 13 year old son. I balled my eyes out. That entire week is a blurr to me. Like a funeral is for an immediate family member. But I Iremember thinking, I thought we had more time with him at home. But his aggression and our concern for his (and our) safety were an immediate problem. The guilt driving to the residence, with his suitcase packed in the trunk, his stuffed monkey, and favorite bedding.
    I had to stop writing just now to control my crying. Everyday I feel guilt. It has been a year now. We bring him home on the weekends. Sunday nights and Monday mornings are hard on us.
    I do alot of praying.
    My son is doing so much better. His meds seem to be right for him now. I still cannot see him coming home anytime soon. But maybe, someday.
    I miss him being at home so very much that my heart hurts. But I really try to look at the progress he is making, and hope that we did the right thing .
    Thank you for writing about this subject. Its a harsh reality for some of us.

  31. my son is severely Autistic and non verbal, he does attend school everyday. does have tantrums and out bursts. I’ve tried getting outside help but keep getting turned away. I cannot put him in a home because i fear he won’t survive, he was abused in a public school here and was swtiched back to his winter school. I am going to just watch him thrive on his own and with our help. I had a hard time handing him over to nurses for his open heart surgery. i give anyone credit for those can that do that.

    • I’m so sorry you have had that experience. We have been lucky over here that Taylor has been in such a good environment. Searching out group homes, when the time comes, will not be easy, but we found a great behavior consultant who will help us. I’m not sure how many services are available to you, but over here we have a developmental disability office through the county that provides services and resources. Also, if you have a teaching hospital near you with a pediatric developmental department, they would be worth contacting. You might have done all this and more already, but just in case 🙂 .

  32. I have been to that lonely place that not too many have gone. I had to place my 7 year old twins in a group home a few years ago. The hardest thing I ever had to do and the lowest point of my life. No matter how many people tell you they understand what you are going through you know this not to be true and you feel all alone. My twins are my babies. I have 2 other boys at home with special needs also but it’s hard to explain to them why I had to place their brothers in a home. Pray, believe and hope!

  33. My husband turned 60 this year and I am one year behind. Our 35 year old daughter, Betsy, doesn’t have autism but severe cerebral palsy. She is non verbal and completely dependent for all care. The time is closing in on us fast. Thirty-five years has flown by and even tho we knew our time would come it wasn’t such a reality as it is now. I’ve tiptoed around to see what is available and it’s not pretty. She loves her showers, feeling fresh and getting her favorite lotion put on. It won’t be done enough. She won’t have someone carrying her to bed at night tucking her deep inside her covers telling her how much she is loved. Will anyone come into her room in the morning and sing to her til she wakes up? Supposedly then we will have our time, our freedom. We don’t want it. I don’t want to travel and wake up listening to the ocean. I want to wake up and hear her breathing over the monitor. Safe, warm, loved and content. She has two younger sisters that will watch over her. We have never had the expectations that she could live with either one of them after we are gone. She requires 24 hour care and all I ask of them is to make sure she is safe and receiving the best care possible. Thank you so much for your post. It is a heart breaker but at the same time it gave me comfort knowing there are so many parents out there knowing there is no happy ending.

    • Cheryl, my heart goes out to you. Keep looking, if you feel you can. We have found a wonderful behavior specialist, who happens to own a group home, who was able to help us understand what they are like. Not all homes are equal, and there are bad ones out there. I know it’s hard. We aren’t there yet, but I could only imagine what it feels like. Prayers to you. <3

  34. This was beautifully said. I always tell parents “never say never”. I was one of those parents who was never going to “put” my child in a group home. Well I can say that when my daughter was 14 it was not safe for her or my other 2 children in my home. She moved into a group home run by the Groden Center and has flourished! Group homes have some how received a bad reputation and as we all know there is good and bad in everything. My daughter comes home every weekend and I am contact with her staff during the week. This is a great relief for me, if I died unexpectedly she is in a safe, familiar environment that my family choose for her, and she is very happy in.
    Are group homes for everyone? Absolutely not! Shared living is a wonderful option for some people, everyone is different and we need to keep that in mind.
    I love the idea that when someone turns 21 (when they go into the adult system) they can all of sudden make their own decisions. Of course this another case where everyone is different and if they can make their own decisions that is great but my daughter can’t. She has no idea what work is, no matter how many times we explain it, doesn’t understand money, bills, safety.

    Thank you for your comments your family is in my prayers

    • I too said the “I will never…” until things changed. He became more aggressive; violent. He is a ball of love, giggles, and fun as well. We, in no way, are at that point and have more options to try ahead of us, but unless things start on a new trajectory, this is something we will have to prepare for.

  35. I understand your concern and heartbreak. There are great group homes out here. I work for one inarshfield MA. the important thing to remember is to stay involved after placement. No one can ever replace a loving parent or other family member. Visits home, phone calls, mail and other interaction is often the highlight of an individuals day. Love and light to you and all parents facing this difficult decision

    • Thank you for your comment. We recently hired a behavior consultant, who owns a group home in high repute, and she was able to put my heart at ease as she described what a group home really looks like.

  36. My Dear Sarah, I am a Single Mom with 5 children, One of them has Autism , He Has Made me a Better Stronger Person!!! I am in the Medical field dealing with Mental Health, I am in this field because of My child. Yes, They’re are some Great Caregivers that do a Great job and Help kids and people in their Facilities, but, You have to remember that these Facilities are 24/7 and Different Caregivers come on shift. They all are Different and might not be as Loving and caring as much as the first Caregiver. I know this, because people do things differently, I work in a place for a reason, I love My Job, I will always Help and treat them like I was a relative. I just wish it was like that with All Caregivers…AS One Mom to another, I am giving you heads up on what some people can be like, because I know. I know you want the best for your son, Autistic Children are very intellectual, some can not speak and express their feelings in the way we know, they Just do it Differently in the way they express their eyes, Hands, and Facial movements. It is the Only Language they know, It’s like trying to talk to someone who does not speak English, WE just have to learn their language. I know your child says he loves everyday, just like you say you love him, He just says it in his Own Language. I wish You and your Family the Best, and Most of all I wish Your little Boy a Wonderful, Caring and Loving Future!!! You have a Blessed Family <3
    " LEE"

  37. I haven’t read every single response to this post/blog so if I am repeating what someone has already shared, please forgive me. I read many posts/blogs regarding Autism but I rarely ever respond to posts/blogs like this because I always assume that there are enough of us out there that someone more than likely has already said whatever it is that I have to say. But I feel compelled this time because the information I have to share, I received from a blog post from Autism Daddy on Facebook. He had a post about the type of medication that has helped his autistic aggressive/violent and epileptic son. I don’t know off the top of my head which medications his son was taking, but it prompted us to have a serious conversation with my son’s psychiatrist about possible medications to help with his violent episodes. I read this post about 3 months ago at a time when we were being urged by several therapists who were compelling us to consider institutionalizing our oldest son who is now 16. In a nutshell, my son was having severe violent episodes almost daily. He crashed into our living room window, broke down our front and back doors and escaped several times. He hit a classmate so hard that he broke her nose. He is verbal and was constantly threatening to kill me, my husband, his younger brother (who, btw is also on the spectrum) and to burn down our house. We were at our wits end. Everyone was urging us to do something (put him in a group home) or risk having the authorities step in and possibly take him and our younger son out of our custody. The thought of having my children taken away from me was my worst nightmare. When our family therapist referred to our home life as a “domestic violence” situation and that by allowing our older son to continue to stay in the home that it was putting our younger son in harm’s way and that it was just a matter of time before he severely injured himself or one of us made me realize that we were on the verge of losing our children. I knew we had to do something drastic to save our son and to keep him with us. He was already taking a medication called Abilify. He had been on it for almost 3 years. We saw some improvement. But the real miracle, at least for our son, for our family, was when we started him on a medication called Clonodine. He takes it 4 times a day, in small doses. It took a few weeks to get the right dosage and dosing schedule, but it has changed our lives for the better. Our home is a home, no longer a war zone. I am not a big advocate of solving problems by taking a pill. I fought the idea of medicating my child for years. I can talk for hours about what type of interventions we have tried with both of our sons. I will sum it up in one sentence, 3 different diets for at least 6 months each including GFCF, probiotics, enzymes, 7 years intensive behavioral therapy (DTT) (which helped to a certain degree), Epsom salt baths, etc. I am not saying that these do not help other children on the Autism spectrum, just not mine. Except for the behavioral therapy, but even that only helped to a certain degree. At this point in our lives, we are not striving to “cure” our son of his autism. We know that he will need to be supervised 24/7 for the rest of his life. He will more than likely never lead an “independent” life. That is not skepticism, it is reality. My goal now is to keep him with us for as long as we are able to take care of him. Clonodine has given this to us. Our son went from having a major violent meltdown 6 or more times a week to once a month. By major, I mean, full on punching, head-butting, biting, throwing large dangerous objects, kicking full force, etc., for as long as an hour, sometimes longer and more often. It really is a wonder how none of us ever ended up in the ER after any of his violent episodes. I am aware that every medication has side effects. For us, the only side effect that our son has experienced (thus far) is occasional sleepiness. One good side effect, besides making him much less aggressive, is that he also became less OCD, he stopped stemming as much as he used to. He is an artist and still draws and does all the things he used to love doing. It has not changed him, just took his aggressive behaviors down several notches, enough to be able to keep him with us, where he belongs. He still gets upset about the same things he used to, i.e., having to do non-preferred activities, transitioning from something preferred to something non-preferred, loud noises, technological difficulties, taking a bath, brushing his teeth, not getting his way, etc. For those out there who are against medicating children on the spectrum, I just want to say that in our case, for our son, if he were to be taken to a group home, he would not go without a fight. A fight that would have more than likely ended up with him being restrained and given a strong sedative. Clonodine might not be the answer for your child, but there are other medications that might work. It couldn’t hurt to have a conversation with your child’s doctor/psychiatrist. If severe aggression/violent behavior are an issue and your child is approaching adolescence, it might be a good idea to have the conversation before they get to be at size where they might become unmanageable. It is easy to restrain a five year old from hurting themselves or others, but when they get to a height and weight beyond yours, everything changes. I am not looking for a debate about this. I just wanted to share what worked for us. Good luck autism families. My heart goes out to all of you. Someone once said to me that God only gives special children to special parents. I don’t know if this is true, but for some reason, it always made me feel better in the moment.

    Jen

  38. Hi your article is truly touching and shattered my heart in million pieces. But you know what Sarah let’s not give up on our kids. I know how you feel as we are sailing in the same boat. This is just a suggestion, but have you heard about Son Rise program? I hadn’t until now and had the opportunity to go for a seminar with #Raun K. Kauffman. I’ve spoken to parent personally who have started with the program and it has worked wonders for their kids. Let’s not give up. Its hope that keeps one alive and going. Please do attend it once and I’m sure you will find a way to help your prince 🙂 You can google it. My love and prayers are with you and your family. God bless!

  39. I have an autistic grand daughter and am worried she may end up in a group home in a few years time. My daughter and I have talked about it a lot and it is scary. You hope and pray that all the therapies she is having will make her be able to function in society really well. I feel for the families
    that after years and years of caring for their autistic children that they have gotten too old
    and exhausted to go on, especially if their children are aggressive. I cant believe people can be unkind over this. Don’t know what was said, but can only imagine. Those people are the disabled ones in my opinion.

  40. I have a 5 year old – non-verbal, very strong already and at times can be aggressive, towards himself and others. I know those fears and sadness that just literally takes your breath away. I know the day will come and it literally makes me sick to my stomach that we will even have to be making that choice. I know it may very well be good for him. But to imagine my sweet baby boy right now not in my eyesight and unable to kiss truly pains my heart and pain so deep there is no way to describe it- but I know you know. Nobody truly understands besides another parent. my thoughts are with you. thank you for your tender message.love Tanya mother of Liam

  41. We fear more because we haven’t heard of a “group home.” We always worry what will happen after we are gone. Is there a special group home that you know of, or is there something we can look into before hand. My son is 17 and non verbal as well…..

  42. Sarah
    I was in your shoes a few years back. Making that gut wrenching choice.
    If you need someone to talk to feel free to call. I truly understand most of what your going through.
    I love Taylor.
    I can truly say your Taylor loves his family. Never think differently.
    Your an amazing mom.
    Love Mara berry

    • Mara, you literally turned my night around! I didn’t realize that autism speaks was going to post my blog to Facebook as well, and despite how exciting it is, I was naive enough to read some of the comments. Many were nice but others were so so cruel. We love you too. I wish Taylor would have all his teachers this year, forever.

  43. Sarah, I just read your post and it brought me to tears. I have worked in Human Services for 35years and have seen many things good and not so. It’s funny last year I decided to seek another profession as a Real Estate Investors since I wanted to have enough money not to worry how I will take care of my son. I will always be a voice for Individuals with special needs. Hopefully I will be able to do good with enough funds since I know where they are needed the most in group homes. I will continue to make a difference. If you need to reach out with any questions please do so at battleypalma@aol.com

  44. I have a 26 years old son who has been in a group home since he was 15 years old. Be sure to become the conservator of your son. Be part of the team and keep advocating for your son. Listen to your son he will let you know if the placement is what they say they are. My son does not even have verbal skills. He is still able to communicate to me.

  45. Sarah, I felt the need to comment from a little different perspective. You see I work as a caregiver at a group home for young adults such as your son. I can understand your fear & concern for when that day comes. As a mother myself, not with any special needs, but a mother who lost a daughter in a car accident, I know a mother’s heart for her children. I wanted to maybe put your mind at ease a little by telling you that the young men who live at my group home are so special to me. They are like sons to me, it hurts me when I see them abuse their bodies by biting their wrists or hitting their head on a wall. I do whatever is within my ability to protect them. I believe most people who choose this type of work truly love serving others. We take up for our guys if we are out in the community & they are disrespected in any way. God put this in my heart, this need to care for these young men. It is only the love God has shown me that makes me able to show this love to others in this profession I have chosen. Sarah, I hope you will at least be able to be at ease in the fact that your son will continue to be well cared for. May that day not come upon you too soon. God bless you & your family!

  46. This is my greatest fear…doing all that I can and then having to do..”that”. I admire your strength. I admire your courage. I also admire your ability to be honest in the midst of what must be a mental war. God bless you, your family, and your son. I pray this home will help him to grow by leaps and bounds. Love and blessings.

  47. My son is 34 years old with severe autism and moderate mental retardation. In my state, RI, we have very limited options for his long term care. He will have to remain at home until there is a crisis situation and we are no longer able to care for him. I may be well into my 80s and he his 60s if we remain healthy. My sickness or death will result in his becoming a ward of the state and put into foster care. I know a few parents whose children have been in group homes for a number of years and they found it to be a positive experience. It is hard for me to understand who will take in an old man with profound disabilities and give him quality care. I wish I could move him to a group home that I could be a part of by volunteering and visiting often. It doesn’t have to be a negative thing. You may even rest easy knowing what type of like he will lead.

    • Hi Darlene,

      Have you heard about the Son-Rise program. They’ve had fantastic break through even with a 34 year old, non-verbal person. No harm giving it a try. Please go through their website for more information or you can even attend their seminar to know more. But its amazing. I’m a parent of a child with autism too and I’m planning to go in for their program. I reached my decision after attending the seminar and talking personally to parents who have followed the Son-Rise program. May God be with you and show you the right way! God bless! We are moms and we never ever give up on our kids 🙂

  48. As the grandparent of a non-verbal 13 year old child with severe autism, who was placed in a loving group home in December, 2013, I want to applaud you for your honesty and willingness to share on a very painful subject. I know the “general public” does not understand any of what you described. A child who doesn’t sleep for weeks on end – a child who bites and hurts himself and others and you don’t know why – a child who is so strong that you need to somehow protect yourself and others from him – a child who “runs away” known as eloping, who has to be watched 24/7. “People” don’t understand, but I and others with a child with severe autism in their lives, do. Stay close to those who support you and be confident in knowing only you and your husband know what is best for your son and your family. Am I in gut-wrenching pain because of my grandson’s placement? Definitely yes. Do I know with all my heart and soul he is where he belongs? Absolutely. That, and only that, gives me the strength to handle this.

    • I’m so glad you were able to connect with this post. My son does everything it sounds like you’re grandson does, and it is hard. Writing about it helps to cope. Many blogs out there don’t expose the gut wrenching parts of autism as well as the great parts. The general public is never going to understand anything until it gains a voice amidst the craziness of life on this planet.

      You sound like such an awesome grandparent and advocate for your grandson. I don’t know if you were able to read my follow up post, but I wrote to address a very mean comment left for this post just intending to hurt. It made me so mad. I thought that if I was getting this, others are too. Bullies will keep bullying until someone says “enough”.

      Thanks for the feedback and encouragment. Your comment was the exact opposite of the upsetting comment I had gotten. It came less than a day after and really helped raise my spirits :).

      Sarah

      • Sarah, I did read the nasty, mean-spirited comment you received. That’s what prompted me to write to you. One of the things I forgot to mention is the pain our family experiences when our grandson hurts himself during a major melt down. You and I know there is very little we can do to stop it at times. Most of the time, we don’t know what has triggered it. Don’t waste your time and energy on bullies and, just keep blogging. Your blog is a tremendous help to me.

    • Sue, I also am a grandmother of a severe autistic 12 yr old. He is the light of my life but I too know that day is coming. He is very big and very strong but I can hardly breath to think of all the the things that could happen to him and he has seizures! No one could possibly know the fear and pain felt by the family as they prepare for this transition! My God give as all the strength and courage we will need

      • bk- it took gradual steps for our grandson to be placed permanently. His mom and dad did a lot of research into homes, with the help of his caseworker. They rejected any place that was out of their home school district, which meant that he could stay in his familiar school and be close enough to home for frequent visits home. He spent overnights there over a period of two or three months where they thought he would finally be placed. The owners of the group home would text pictures of him during his stay there, which they still do. His parents and others he likes to be with can take him out any time they wish, being sensitive to the group home’s pre-planned activities, which occur daily, and texting the owners with a request to take him out.
        It will always be painful for me (and, ten times worse, for his parents) to have him placed outside his home, but, as I said in an earlier post, I know he is happy in his new home and he is where he should be. He sees his parents, 2 siblings (with whom he does not interact), 2 to 3 times a week. He is always happy to return to his group home, just as he is always happy when he is picked up to go out. This all is positive -among other things, his family can get a full night’s sleep and the ability to do things with his siblings that they could never do when he lived at home.

  49. Sarah thank you for being brave and honest. That really did break my heart but also gave me a new awareness and perspective, Thank you

  50. Tell me…..oh Sarah, that broke my heart for you. This post really allowed me to understand what you are feeling. I remember my uncontrollable sobbing the night before my youngest left home. And that was his choice. I can understand how you are feeling. I will be praying for you, my sweet friend. God loves, sees and knows Taylor.

    • Lorie, you have no idea how much your opinions mean to me, and your encouragements bless my heart so much!
      p.s. we got your card for Taylor yesterday. I’m not sure who was blessed more, Taylor or us!

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