Previous Post Next Post

Kid

Brought to you by

Home Away From Home: Why my autistic children don’t live with me.

Why my autistic children don't live with me.

By Kent Miller |

I’ve left Austin with my parents and am running up to my favorite place in the world. No, it’s not the Taj Mahal, nor the East Village, nor the Grand Canyon at sunrise, but a nondescript home in a beige exurb. I knock, and Fe, who runs the home, lets me in. Hellos/thank yous. I proffer a box of chocolates, a small token of esteem, when suddenly I hear the footsteps.

I can hear him even before I see him, the quick breaths, his bare feet slapping out a rapid beat as he dashes down the cream-carpeted hall, and now here comes Ethan! Ethan! Where are you running pell-mell?

He’s a tall ten-year-old but still as cute as ever, with wide eyes and a mouth like an O. He’s just shot out of the hall and into Chloe’s room. He doesn’t have time for me. He has important stuff to do. He’s on a mission. In his tiny brown hand he clutches something as precious as any gem from King Solomon’s mines.

As he runs he syncopates up and down, up and down, with a rapid ska-like beat. I chase him into Chloe’s room, where he’s next to his big sister’s bed, springing off the balls of his feet to heaven. He’s so excited he’s hyperventilating, so that when he says the only word he knows, it comes rushing out, short and quick but most of all, excited: “OohOohOoh!” Then he opens his palm and rests his treasure on Chloe’s Disney Princesses bedspread. It’s a small, smooth rock. The sort of decorative rock you seen in an aquarium. Moss green.

Then he turns and dashes off. He hasn’t even noticed me. But that’s okay, he’s doing his thing, and anyway, now Chloe, thirteen, throws back her covers and, as she does on each visit, stares at me. She’s uncomprehending at first, but then, by sure degrees, her expression changes from confusion to dawning awareness and then she suddenly remembers me.

Her face lights up like it’s the first day of the world. She squeals and laughs – for she has no more words than her little brother – and throws her arms around me and holds me tight. As always, I think, This is the most amazing hug I’ve had in my entire life!

And all of a sudden it’s all worth it – the therapies, the struggles, the ominous words from people in white coats, because Chloe is laughing in my ear. Not any ordinary laugh, but a laugh that’s beautiful, melodic, like something you heard when you were a little kid and it was spring and the world was green and buzzing with life and:

Ethan and Chloe are both autistic. And now, because of this nondescript place, this palatial tract home, they’re safe and clean and well cared for. Every time I visit and see Fe and Marcie and the others, the clean rooms, the gleaming kitchen, I feel so, so thankful.

It’s sad leaving them, but I know the sight of Austin will lift my spirits. He’s their big brother, an irrepressible bundle of teen angst and joy, and he needs me very much. He has autism too, only it’s the high-functioning kind: Asperger’s. He’s as brilliant as they are delayed.

For the rest of their lives, Chloe and Ethan will need help each time they go to the bathroom and they will never be able to go out alone. Such is the peculiar nature of their disabilities that Ethan will run heedless into traffic and Chloe will take all her clothes off and dance on a roof thirty feet off the ground – all of which means that neither their mother nor I can assure their safety anymore. So three years ago, when Ethan was seven and Chloe was ten, we placed them in a home, where Ellen catches Ethan when he starts running at four a.m., and Fe carefully washes and braids Chloe’s hair. The staff there feeds them, and puts them on their school buses, and makes sure they are safe and cared for twenty-four hours a day.

With my mind free of worrying about Chloe and Ethan, I can focus all my attention on Austin. And does he need it. That kid could win a genius grant someday, although I’m not sure what for – perhaps something along the lines of (and these are just a few of his latest obsessions) Sumerian linguistics, Great Lakes paleontology or green engineering. First, though, he’s got to learn some basic stuff, like how to make sure his math homework is legible.

Austin was born in 1992, when the autism epidemic that today strikes one in 150 children was just beginning. There were no memoirs, how-to books, or websites for my wife and me. Early diagnosis and intervention, the bywords of today’s savvy parents, were unheard of. When Austin exhibited unusual behaviors – fascination with the wheels of his toy trucks, indifference to peers – specialists assured us that he was fine, just a little “eccentric.”

When Austin was three, Chloe was born. And for quite a while she was a marvelous, developmentally perfect little girl: alert, vivacious, happy, laughing and talking all the time. But shortly before her second birthday she began withdrawing and losing language. She’d spend hours spinning alone in the backyard. She jumped so frequently and so hard on the furniture that we had to get a new living room set. By this time my wife was pregnant with Ethan. Within months of his birth, all three children were diagnosed.

Those early years were very difficult. My wife quit her job to look after the children. We cajoled schools, insurance companies and the autism research clinic at the nearby university, in an effort to cobble together therapies that were often far beyond our limited ability to pay. The strain of chasing Ethan through a parking lot, of getting Chloe to look us in the eye, of deciding if the latest exciting but unproven dietary treatment would work for Austin, grew and grew. As so often happens with parents of disabled children, my wife and I divorced. Meanwhile, with each passing day, all three children were growing bigger and stronger. And while Austin was learning, Chloe and Ethan hit a plateau.

The group home has lifted a planet of worry from my shoulders. The group home has lifted a planet of worry from my shoulders. Now I can focus when I’m driving Austin from his psychologist to his Shakespeare camp, when I’m teaching him how to cook and clean, and when I’m taking him camping on Cape Cod or the canyons of New Mexico. Because of the group home, I am a much better father for Austin. Because of the group home, I can breathe.

Nobody has criticized me for placing Chloe and Ethan in a group home. Sometimes I wish someone would, though. Then I wouldn’t feel so lonely when I get down on myself. Logic, reason, not to mention vivid memories of my own rapidly vanishing sense of sanity in those last few months, all tell me that placing them was the right thing to do. But sometimes, in the still of the night, I get this gnawing sense that they should be home with me. It’s a haunted feeling that I don’t think will ever go away.

More on Babble

About Kent Miller

bckentmiller

Kent Miller

Kent Miller is completing a memoir about having three autistic children. His articles have appeared in MSN.com, The Seattle Post-Intelligencer, The San Francisco Chronicle and The St. Petersburg (Fla.) Times.

« Go back to Kid

Use a Facebook account to add a comment, subject to Facebook's Terms of Service and Privacy Policy. Your Facebook name, profile photo and other personal information you make public on Facebook (e.g., school, work, current city, age) will appear with your comment. Comments, together with personal information accompanying them, may be used on Babble.com and other Babble media platforms. Learn More.

46 thoughts on “Home Away From Home: Why my autistic children don’t live with me.

  1. ZPetals says:

    This is so heartbreaking. Thank you for sharing your story.

  2. MomofFour says:

    Thank you for reminding me to count my blessings, even when one of my (healthy, developmentally normal – knock wood) children is being a real pain. You sound like a wonderful father.

  3. Marie Eve says:

    I think you’re a wonderful parent. Your story touched me deeply.

  4. citymamaj says:

    Why is he being called a wonderful parent for sending his non-brilliant children to a home and giving his attention to the highest functioning? I ask as a parent of a preteen w/low-functioning autism, and his neurotypical brother, both of whom live with us –both of whom deserve the highest quality of life we can give them regardless if one of them needs his butt wiped for the rest of his life and the other wins a nobel prize. It’s hard, heartbreaking and messy to have to live this way and provide care 24-7 but I would not consider myself to be a good parent by handing off my son to be rasied by strangers.

  5. Spartic says:

    CitymamaI think you fail to see that by making the heart breaking decision to place his other two children everyone benefits. Trying to adequately care for three children on the spectrum would push any parent to the brink and this father made the appropriate decision to ask for help when he needed it. That is what makes him a wonderful parent. People often fail to realize that recognizing your limitations is not a sign of weakness and it takes a huge effort to ask for help and admit you cannot do it all on your own.

  6. Emomma says:

    Sometimes the absolute best thing for a child is a parent who realizes their own limitations.

  7. cotopaxi says:

    citymamaj, I don’t think any of us are in a position to judge unless we have been faced with the task of caring 24-7 for THREE severely autistic children – and maybe not even then, as each situation is unique. Having spent lots of time helping care of one severely autistic teenager, I cannot even BEGIN to imagine the stress of caring for three all the time – I cannot imagine I’d be anything close to an effective parent to any of them, or even a minimally functional human being. It doesn’t sound like placing them was something he did lightly or for selfish reasons, but was the product of careful thought and heartbreaking conclusions.

  8. cj23451 says:

    this is heart-breaking.

  9. Knitty says:

    What a terribly sad situation. I can’t even begin to imagine what being responsible for three autistic children must be like. A friend of mine had to put her severely autistic child in a care home a few years ago, and it was absolutely wrenching for everyone except the child herself; she’s actually doing better there than she was at home.

  10. mommashay says:

    Just ignore citymamaj. You had to know your article would bring out the sanctimonious martyrs. We all know parenting comes with struggling to make the right decisions regarding what’s best for our children. Sometimes those decisions are painful and controversial. You said it best. You know in your heart you made the right decision. That’s all that matters.

  11. catem says:

    Kent,Thank you for sharing your thoughts – painful, glorious and so honest. I applaud you and think that your story shows us all how multi-faceted life is and that often there’s not the perfect answer for anything. We do what’s best for us and that may not translate to what another family needs, nor may it mean that we always feel so wonderful about it every moment of every day. Such important points. May you and your children have many more glorious moments together.

  12. kanga2bme says:

    I just find that story sad. Children belong home, with their family- disabled children included. Group homes will never be safe places, by virtue of being institutions they are unsafe. I have seen the abuse and neglect, in the very best facilities. Children are traumatized by unnecessary restraints, parental separation, and high staff turnover. Yes, sometimes kids need to be in residential care setting- sometimes their behaviors are too dangerous or they have no quality of life outside of them. Sometimes they have needs that simply cannot be met outside of an institution. But most kids who are in institutions don’t need to be there, and in young children the effects of institutionalization can be especially profound. Most of these children who have severe PDD’s just need intensive support- in their homes, in their communities, and in their schools. Intensive respite care, one on one care workers, behavioral support, recreation programming, special education programs- these can provide for a very high quality of life for both the child and their parents. That support sometimes is more expensive than a congregate living facility, however it is an investment in raising individuals who can function in society, it is an investment in typical children who learn empathy, diversity, and compassion from their disabled peers. When home based options aren’t available, or are available and not accessed, it is tragic. It is a disabled child’s right to be raised in a family. Just like a typical child has a right to live, night and day, as member of a family.Children, even disabled children, do not “plateau”, they grow every day in their own ways. Yes, some children might never read, or know who Shakespeare is, they might always need helpers at their side. Frustration is a common response when it feels like a child is going around in circles. They still grow, and learn, every day in their own way. Every child deserves to be cared for in a family with people who love them- and when they are not, when they cannot, it is a failure of our system of care and of society at large. It is not a failure of them to adapt to us, it is a failure of us to adapt to them.Very sad.

  13. aenea says:

    Kent- thanks for writing this. I have 13 year old autistic triplets, and my son has lived in a group home for almost 6 years now. It’s far and away the most difficult decision that our family ever had to make. I wish you and your whole family the best. Jen

  14. cotopaxi says:

    kanga2bme, I imagine most parents would prefer the setup you’ve described – the children at home, but with intensive, one-on-one, 24-hour support provided. Unfortunately those resources are not often available. The child with autism that I helped care for was eligble for many services, and his parents took advantage of all the resources they could find. He had a one-on-one helper in his public school and one-on-one helpers for much of the afternoon, evenings, and weekends (including me). This left them able to take care of their other three children. However, not every minute of the day could be covered. They were responsible for him at nighttime, and he would go through phases were he barely slept at all. He was a danger to himself if awake and wandering the house unsupervised (he would break, chew on, often swallow just about every object within reach, be it wood, glass, or plastic). If one slept outside his door to make sure he stayed in his room, or in his room with him, sometimes he would bounce on his mattress or tap on the wall nearly all night long. Then there were gaps in helper coverage. If school was out for a day, there usually wasn’t anyone available to cover. People called in sick. Sometimes there would be a few months in a row where there just weren’t enough helpers available. This made it extremely difficult for the mom to keep a job, because she had to keep missing days and leaving early, since he couldn’t just be sent to a regular babysitter. I don’t think the parents had had a date night in like 6 years (literally). Rarely did either ever take any time to do anything for themselves. They were just barely keeping it together, stressed out to the max. Multiply that by three… I can’t imagine they would have been effective parents to any of their kids, no matter how much they loved them.Sometimes there are really hard decisions to be made.

  15. kanga2bme says:

    @cotopaxi It depends on how much our society is willing to invest- yes, it would be more expensive to have a 1 on 1 worker there 24/7. However, we afford these services to adults to keep them out of nursing homes and hospitals. Many very ill adults receive 24 hour in home nursing because that is the only way to meet their needs, sometimes even by more than one worker. I think disabled children, especially, should be afforded the same services when necessary. Of course, I know this isn’t possible except to parents who can self-pay for these services, because it’s more expensive to have a 1 on 1 or 2 on 1 worker with a child 24/7 than it is to place them in a self-contained facility that is designed around supervision. And I know intensive home based service models are only available in very limited locations. It’s still what I’d like to see.

  16. Amanda B says:

    I admire these parents for recognizing their own limitations. Not every disabled child can be cared for properly by his or her parents, especially in a situation like this where all three children have disabilities. It seems that this father loves his children and he truly is trying to do what is best for them.

  17. NotConvinced says:

    Ok, why did this guy have 2 more kids after he knew that the first child was autistic?He knew the time and effort that would go into his first child — then why give birth to more kids that he cannot take care of? Is this not indirect child abuse?And after he had a second autistic child which he could not handle, he went on to having a third kid!! Why keep reproducing if you can’t handle the burden? Any why subject children to a always-needed-to-be-watched tough life? And yes, every child is important, and that is why we need to consider them (not our own procreating desires), before we bring them in this world!

  18. gpgirl says:

    NotConvinced, did you even bother reading the article? None of the children were diagnosed until the 3rd was born. Please at least read something before you criticize it.

  19. bmom says:

    I cannot believe anyone would have the nerve to say, “Why have another child because your first–and then your second–was disabled”! No, it was said in an even coarser way. “Why keep REPRODUCING?” Awful. No one knows when they have a disabled child whether the next, or the one after, will have the same disability or a different one. Many families I know have a typically developing child and one with a child on the spectrum, in one order or the other. Not to mention that having a disabled child doesn’t mean you don’t love that child and don’t want more children. Shame on you.

  20. cotopaxi says:

    @kanga: Ok, I think we actually agree. I took your post to imply that this particular family should have made it work with tall 3 kids at home. I 100% agree that we need more resources to keep people with disabilities in their homes. It is often more cost-effective too.@NotConvinced: wow. You are way out of line.

  21. GMPmama says:

    Thank you Kent for opening my eyes and heart. Before reading your article, I would have more than likely criticized most parents who choose to “send their children away” (as it is often referred to). Now after reading your story, I congratulate you for your strength and wisdom in being able to make the best decisions for your children and yourself. I wish you and your beautiful children all the best in life.

  22. locke403 says:

    What I don’t understand is why he sent his high functioning son to a home as well. Did he think it would be more fair that way? I’m not making a judgement, just confused.

  23. Miserable says:

    I completely understand. I live with an autistic 5 year old and a perfectly healthy 2 year old. The 5 year old’s condition makes our lives, and his own, a living hell on earth. I know he can’t help it, but that’s part of what makes it so hard. No matter what we do, he is only getting more and more difficult. Until you have lived the life of a parent with a child with severe autism, you have no idea. None. We are literally prisoners in our own home. We can’t take him anywhere in public b/c of his behavior. We are trapped. And if we do attempt to take him out of this little prison called home, the looks and comments we get from strangers are so incredibly cruel. He doesn’t LOOK like there’s anything developmentally wrong with him, as do children with downs syndrome, etc., so it comes across to strangers as if he is just a bad kid and/or we are bad parents. This is hell on earth. I wouldn’t wish it on my worst enemy.

  24. maggie45 says:

    My son Jon is 29 and has severe autism and my youngest son Ron has high functioning Autism. I have two other children who were a help to me. But I often have guilt at 2 am when my older son is mad and hitting himself – should I have listened to everyone and put him in a facility where he would have constant care and understanding. Then, when he’s being funny and reciting the entire script from the Wizard of Oz, I again realize the blessing he is and how he’s changed me, and the guilt disappears.

    Like you said, when Jon was born none of us had any understanding of this syndrome. But I can credit my experiences with Jon for helping me save Ronnie and give him early intervention. Now he is just like any other 18 year old except for a learning disability and a bit of rigidity.

    I know have my two grandchildren with autism staying with me temporarily and it seems they’re very happy here. I think I’ve changed so much over the year I’ve learned to accept them with all their little idiosyncracies and know what they need in an almost telepathic way.

    When I began reading your article I felt “How can someone put their kids in a home!” But after seeing how you came about this, I think you did the right thing. How can someone work and still take care of three autistic children. At least they are getting constant attention, which is what they need. The main thing is that they are happy and you love them. Good luck and God bless.

  25. margaretgo says:

    “With my mind free of worrying about Chloe and Ethan, ”
    “With my mind free of worrying about Chloe and Ethan, ”
    “With my mind free of worrying about Chloe and Ethan, ”

    Can’t help but really be saddened by this comment. It sounds like your primary motivation for putting them in the home was to unburden yourself. I’m not sure why someone else can braid their hair and wipe their butts better than you can… Well, at least you are (sort of) being honest with yourself…

    Very sad situation.

  26. Nicky Ovitt says:

    I admire this father’s humility and I’m angry that yet again our culture admonishes outside care as being “raised by a stranger.” This comes up a lot in conversations about daycare too, as if family is the only right way. I believe there ARE wonderful people who do this work and give our kids love and support like family. How many of us have friends that are closer to us than our genetic families? Are we unable to trust in the same way because it’s their profession? We should stop insisting that the only place for our kids to grow and be safe is at home.

  27. A says:

    You’ve done the right thing by your family, Kent. I applaud you. It’s clear that you love your kids deeply.

  28. honeymoon says:

    How very strange that you say you love your children but can go awol for a month or more abroad? HYPOCRITE!

  29. Anonymous says:

    How did you find and qualify or pay for a group home? What state?

  30. Anonymous says:

    Are you swarn to secrecy? Details.

  31. Elizabeth Floyd says:

    Beautiful essay on a difficult subject.

  32. vs says:

    I wish those who would like to ‘judge’, would first “walk a mile in his shoes”, not your shoes, however difficult it may be for you or your family, you are not him, or them. One size does not fit all in shoes or family rearing.

  33. Anonymous says:

    Thank you so much for sharing your story. I have the exact same problem with one of my ten year old twin daughters. It is a nighmare on me and her siblings as well. Either she will have to go to a group home or a boaording school which I will have to find a way to pay for. Worse, my two year son started copying her behavior a year ago and tends to scream and be uncooperative as she is often. You are right, this is hell on earth because 90% of people just do not understand, not even family. As a matter of family, it is my family that can be the most cruel in their judgements of my me and my children.

    I encourage anyone who is walking in similar shoes to stay away from those who simply refuse to be supportive and are very judgemental of parents with children who are disabled, but yet high functioning. It simply is not worth it because the fcus must be on getting appropriate help for your children and to take care of yourselves.

  34. Charlotte says:

    Criticize away, those who have never had to deal with the heartbreaking chaos and shattered family life that can result from a disabled child. We have one autistic/MR child out of seven. This one child takes up 90% of our time, attention, energy and family resources. He prevents us from being able to do normal things with the others, like trips to the zoo or mall, because he cannot control himself in public. The one child who is younger than him is in physical danger from him. I am now looking into the possibility of a group home. If people want to judge me for that, have at it. I have six other children to whom I owe a safe, happy, attentive, and normal as possible upbringing. Why destroy six childhoods just to satisfy some nay-sayers who believe they understand our family without ever having met us? If a group home can provide a safer environment for our SN child and allow the rest of our children the ability to actually have two whole parents, rather than 10% of one, then I can tell you which way oir family will choose.

  35. Anonymous says:

    my god please help me.my 9 yr old is severly autistic.hes in diapers and cant talk.hes very viloent and is really starting to target my 7 yr old.i moved all the way from tn to co because i thought it would be better for him.i have no family to help and im on my very last leg.colorado has a taber law which means theres no money for services for him.its time i have to put him in a home but colorado makes you sign your rights over to do that.im willing to move to another state where they have decend homes and i can keep my rights as a father.does anyone know of any places?please help. my email is shane.shelton29@yahoo.com please prey for me

  36. Exhausted says:

    I found this article because I was searching for information on Foster Care and Group Homes. I am a single parent and am raising a child with a traumatic brain injury, impulse control disorder, sensory processing disorder, moderate mental retardation, cerebral palsy and explosive disorder. I am so exhausted. I feel like I can NOT give her the care she needs and deserves. I go to work and receive phone calls every single day. I have begged for help. I need the help really badly and am not getting it. I love my daughter but I wonder if she would be best served elsewhere. I would never abandon her but she needs much more than I can give her.

  37. Exhausted says:

    Extra thought added: For those who are naysaying his decision, I understand how difficult it is to make that decision. I have been crying myself to sleep every single night because I feel like I am running away from my daughter. I think the most caring thing I can do for her is to place her where she can be best served. OUT OF LOVE.

  38. Single Mom says:

    I understand what these families are going through. I have a 10 year old son who is severely autistic. Needless to say these children are difficult to deal with and stressful. I did think about a group home for him when his behaviors turned dangerous..a threat to his safety. He would try to slip out of the house, climb out windows and even run towards a busy street, frightening me several times. I contacted the local Dept. For Social Services to see what options were available. The social worker there had referred my son to a children’s physchiatric hospital was admitted almost immediately. He has been a patient there 4 months now and is expected to be discharged soon. He is on meds and has had therapy. Doctors say he has improved greatly! Perhaps some of you parents might want to see into this option for your child.

  39. Single Mom says:

    I understand what these families are going through. I have a 10 year old son who is severely autistic. Needless to say these children are difficult to deal with and stressful. I did think about a group home for him when his behaviors turned dangerous..a threat to his safety. He would try to slip out of the house, climb out windows and even run towards a busy street, frightening me several times. I contacted the local Dept. For Social Services to see what options were available. The social worker there had referred my son to a children’s physchiatric hospital was admitted almost immediately. He has been a patient there 4 months now and is expected to be discharged soon. He is on meds and has had therapy. Doctors say he has improved greatly! Perhaps some of you parents might want to see into this option for your child.

  40. Cris says:

    Everyone’s entitled to their own opinion but imagine your self with not one but two low functioning autistic kids. The bigger they get the stronger. Plus a child w Aspergers. They are not easy to raise by any means. And have your marriage fall apart. You cannot criticize someone for putting their children in an environment that will ensure that child’s safety and well being. Knowing you can’t parent your child is a devistating conclusion to come to and it’s heartbreaking to have to place your child or children out of your home for safety issues.

  41. Jo says:

    I am wrestling with putting my 14 year old almost 6 feet tall teen in a home because of his strength and aggressive nature. I wish ther was another way. My physical health is taking a toll from handling his behaviors. Unless you have walked in the shoe of a parent with a child on the spectrum. keep your comments limited. The writer had more than he could handle and did what was right for him and his children. Dare we cast the first stone?

  42. Susie says:

    My son is severely autistic as are Ethan and Chloe. The most difficult thing to manage with my son is his tendencies to “wander.” We are constantly revising the locks on our doors and windows but he eventually figures out each and every one. I had been contemplating a group home but have been having no luck finding one here in Bullhead City, AZ. I am hoping to find one near a school that specializes in low-functioning Autistic students, but have had no luck finding one of those either. I am a single mother so my resources are extremely limited, but I am more than willing to relocate to where there are these services. Is there such a place? I contacted DDD, who said they had services that could help me manage my son at home, but as yet, nothing. (My son “escaped” again early morning last week for 15 mins. Luckily a neighbor saw him but the police were called. A few days ago, CPS came and took him away. He is now staying 6 hrs away and I haven’t been able to see him since. Obviously, that is not the kind of services I had in mind.)

  43. rivkah says:

    I have 5 kids and my middle one, now ten, is profoundly autistic. I’m nearing that point because his behavior is completely unmanageable. I have a grant from the state that enables me to hire help but even still, you cant get help 24/7. We’re constantly having to revise our locks throughout the home b/c he gets into everything, food especially, as well as destroys everything we own. As for the comments about having had more kids, I can say that my 4th kid was well on the way when our son was diagnosed. Someone actually had the nerve to suggest I abort, which horrified me. I can tell you, during the horrific first year of diagnosis, that new baby is what got me through, and I thank the L-rd for the joy that baby brought me when I needed it so badly. When we announced that baby #5 was on the way, some ppl called us careless; some called us courageous. Funny – depends how you look at things. We had sized up the situation and realized that there will inevitably come a day that we, the mother and father, will not be able to care for our autistic son. Presumably, he will out-live us. Realistically speaking, at some point, the burden of caring for him will fall on his siblings… hopefully not living with them, but, undoubtedly decisions will have to be made and things will have to be done for him, etc. We figured there’s STRENGTH IN NUMBERS so we gave our kids another brother so as to strengthen their team. Were we afraid the new babies would have autism too? You bet…scared to death actually… but we did two things… we consulted with a geneticist and we relied on our faith. We came out just fine and our son with autism has 4 siblings now (two on each side of him!) who love him and who are so loyal, I know they will look out for their brother when I and my husband are no longer.

  44. Joanne Gibbs says:

    My husband and I are in the midst of making this same decision re: our daughter who has severe autism. She is 21 years old with the mind of a 3 year old, non verbal, incontinent,often aggressive, self injurious, destructive and has no fear of danger. In my mind, I know finding her a group home is the right decision for our family of 5, but to pursue this step is also breaking our hearts.

  45. Alana Raymond says:

    I have walked a mile in Kent Miller’s shoes. Still, I would not at any point pretend to know what he is going through. Sometimes the right thing and the hard thing are the same. As parents of these unique individuals we have to make a myriad of decisions that no parent of a neurotypical child can even begin to comprehend.

    Judgement from others on this site tells me only that we ‘uniquely challenged parents’ have much teaching to do with others who don’t get it.

    If anyone within my daughter’s village of people helping to care for her provide judgement or unwanted feedback my response is always the same “I will drop my daughter off at your house for a week. After you have spent that time with her I will be happy to discuss anything you feel you need to say to me”. Funny thing though, I have not had even one person willing to take me up on this offer :) .

    Stay strong Kent Miller. Whatever you are doing for your family is the right thing to do for your family. Take care,

  46. Erica says:

    I just want to make a comment about these kids with severe autism. They can be a huge problem for the parent(s) and possibly try and harm someone. I had a fiance whom I love more than anyone I ever had a relation with, who have a son with autism. About a year ago, every other week end his son came to spend the week end with him. The boy’s mother dropped him off one day and never returned, so therefore, to this day, my fiance had to take full custody of him. He and I stopped spending time together and we broke off our engagement because of his son because I refused to spend time with his son and take care of him knowing that this child was a huge problem and I wasn’t going to go through the drama. I have a son of my own, thank God, who is a very nice child. I felt that my fiance’s child could possible hurt me or my child while we slept. I wasn’t going to take any chances, and my family agreed with me. My fiance moved from Houston to San Antonio in order to get help for his son. That’s been almost a year ago and he still hasn’t received any help. Someone told my ex-fiance that they refused to take him into one facility, after spending 3 days there, because he’s a treat to the other kids. My ex-fiance is so frustrated because they are giving him the run around and no one is helping him. His son needs to be in a group home or facility where someone can take care of him. If I was in that situation, I will do the same thing like some other parents who kids don’t live with them. I suggested to my ex-fiance that maybe he should consider letting the state of Texas take custody over him. He said that he have thought about it. I hope that he does because this kid is killing him slowly.

    If there is somebody out there who can give us any information, please respond. Thank you.

Leave a Reply

Your email address will not be published. Required fields are marked *.

Previous Post Next Post