And I thought I’d have writer’s block forever…

Recently I received a pretty negative and destructive comment on my last post The Hardest Thing or under the title The Day I’ll Have to Put My Son in a Group Home on the Autism Speaks website.  First off they said that it was a very depressing article (genius how they made that deduction). Then they continued on with questioning why I believed he needed a group home, had I found one, claiming I was dumping him off so I could devote my time to my husband and other two children, telling me I am giving up on him, questioning why parents of autistic children feel the need to “put them away” in a group home, saying I am his only advocate, and stating that putting him in a home and saying goodbye to a stage in our life really was a goodbye…like forever.

I will straight up tell you; all my comments go to moderation so I can filter out the destructive damaging ones.  I will allow comments of respectful disagreement from time to time, but I have to keep in mind that so many of my readers are in the same spot and read these comments.  It is enough of a painful life on its own without the addition of comments that not only are hurtful, but pointless in that they offer nothing productive.

That being said, I want to answer some of these comments, because this kind of thing happens all the time; maybe not so directly, but it does.

First off, I never intended it to be a “sunshine and roses” post.  Honestly, that would be quite weird. Placing your child in a group home isn’t exactly happy, which would be why I posted the way I did.  This is a subject that isn’t widely talked about because it IS depressing.  Yet you can have all the “awareness” in the world, but that means NOTHING if not coupled with empathy.  How can we create empathy if we don’t show the struggle and pain in its raw form? How would people not accustomed to autism be expected to know…to understand?  I was very honored when Autism Speaks accepted my submission…only 3 hours after I submitted it. And you know why? The contact person had a child who they had to place in a home years ago, and he echoed my post and said that he still feels that way from time to time.  This story about this harder part of this life needs to be told.

Yes, there are so many success stories. check this out…
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and this…

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He spelled these! On his own!  These are awesome reminders that warm your heart, thrill you, and give you hope.  But the other side is that your child still may have to go to a group home.  There still are struggles, frustrations, pain, and more.  I write about Taylor’s awesomeness, but I feel compelled to write on subjects that may be too painful for others to talk about.  I feel compelled to be a voice for those people.  Might everyone feel the same way I do?  Probably not.  But many do.  Others need to hear our stories.

So why do I think Taylor will need a group home?  Plainly, he’s violent when frustrated and angry.  Only towards adults, but if it ever became directed toward the other children, unless measures to correct it fail, it would be a necessary thing.  He’s an 11 year old, the size of a 13 year old, and the strength of a linebacker.  When you put a three year old pinching, hitting, kicking tantrum in a teenage sized strong body,  it can be dangerous.  I write this while choosing not to dwell on that because it would cause sobs, and I wouldn’t get through this post. He is a runner.  I want to make sure his quality of life is good. He has to be quarantined inside the house or in the back yard because he will run off and hop, skip, and dance in the middle of busy streets.  We are working on a plan to be able to take him to the park and run and play, but with other kids in the house, it becomes more difficult than it sounds.  He needs a lot of structure to be able to function. A.LOT.of.structure.  More than we can sometimes offer, and it will only become increasingly more difficult as he will need more and more of it as he grows older.  Eventually a group home would be able to keep him safer, happier, and more functional than we ever could no matter how hard we tried.  Does that mean now? No.  Anytime soon?  Probably not.  Will I fight tooth and nail to the end to keep it from happening?  Of course! Do I ever want it to happen?  OF COURSE NOT!

Which leads me to the question of “Have I found one yet?” Umm….and why would I have done that exactly?  He isn’t there yet.  Not close.  Group homes can change over time, get better or worse, are not all the best fit for every kid, and so on.  Plus I’m sure they wouldn’t take an indefinite reservation time for a child… “Who do you need placed?  Oh they don’t need it yet?  When do you want to place them?  You don’t know?  Why are you contacting us then??”  It is a ridiculous question.

Now onto the verbiage the commenter used…dumping.  I am picturing some kind of scene where we open the door as we drive by, push Tay out, and yell “Tuck and roll!”  No, I am not dumping him off.  He isn’t just some nuisance to get rid of.  And no, it’s not just so I can devote time to my husband and other kids. However, I also do have to take into consideration the well-being and health of the rest of the family.  As much as I want to pour myself into Taylor, the whole family must be considered.  Is it easy? No.  But it is an unfortunate part of this life that we cannot ignore.  Many times, at the point of needing to place your child, both the child and the rest of the family are equally suffering, and the placement is best for all involved.  I don’t know this personally yet, but I have been told this by psychiatrists, psychologists, behavior consultants, group home owners, educators, and personal stories of families living that stage of life.  I have heard of stories where the family says since they placed their child, they feel like they have their old happy child back again, not the angry frustrated child acting out and lashing out.  None of this implies that any of these families are glad that placing them was the only way.  It’s just a harsh reality of this life.

In no way am I giving up on him.  I love him with my life, and that will never change.  This is not a “Have fun.  See you on the other side of eternity” type thing.  We still will be very active in his life.  I am trying desperately to put it off as long as I can.  I hardly see that as giving up.  I also think people should do research into the modern group home (and not just Wikipedia) before they make assumptions about how they work.  My husband and I are putting more services in place to help him be happy and help our home feel a bit more structured and less chaotic.  Services like respite care for things, like trained professionals to take him to the park and other places as well as come to our home and keep watch over him so we can sleep during those week-long periods when he won’t sleep.  Professionals who come to our house and watch him so we can finally attend church as a family.  Professionals to help teach him occupational and behavioral coping skills so we can spend more energy on parenting our other children and ensuring they actually have a life of their own as well. We will have more coverage to afford medical interventions, psychology, and speech therapy.  We will have access to more funding for tools and supplies he needs to better function and be safe.  We are in the process of waiting on approval for the program, through our state, that would allow all this, and we can’t wait for the time to come when all of this will happen for us.  I hardly think that qualifies as giving up.  And you know why this plan is available, why it seems too good to be true, why it seems to cover so much?  Because to the state, that is cheaper to them than paying for monthly group home charges.  They also realize that these children are happiest in the home if the right services are in place.  Even the state doesn’t want to give up.

I don’t understand why he assumed all parents of autistic children send them to group homes.  My son is severely autistic.  There are so many autistic children less affected who live wonderfully independent lives.  This isn’t an all-inclusive experience.  I’m not sure this person has an autistic child of their own.  If they do, I’m very confused as to how they don’t know this already.

I have heard the phrase, “You are their only advocate” before.  This isn’t true.  I am his biggest advocate and will make sure I always have the final say, but I can guarantee, I have 60+ friends, educators, specialists, doctors, and family ready to stand up for him, protect him, love him, help him, and take a stand against bullies like this commenter.  They support us, love us, help us, cry with us, laugh with us, and are there through it all.  It is a gross error to assume every autistic child has only one or two advocates, being who ever their guardians or parents are.  These advocates are why we are able to postpone placing him in a group home.

Finally, I never said that saying goodbye to him in our home was a final goodbye.  He knows that, as well as everyone else who read my exact words…“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…”  This is once again, this commenter’s opinion.  Not mine, nor anyone else I know, and I venture to guess that the majority of people feel that way too.

I’d like to add that Taylor is an amazing boy.  With all the outbursts he has, he has just as much or more smiles, giggles that you can’t help but giggle in return, love, cuddles, fun playing video games with family, dancing, and joy.  He is an inspiration of unconditional love.  He has blessed our family just by breathing and being alive on this Earth.  This is why I will fight until I have no more strength in my body, to keep him near me.

I feel sorry for this person.  What a waste of time it was to write such negative, hateful, hurtful things all for no productive purpose.  And I don’t consider bullying productive.

I am reminded of a commercial that recently came out where parents, representing the major different types of parenting styles, all start to battle with each other…until a baby becomes in danger.  Then out of instinct, everyone forgets their pettiness and differences, and races to save the child (in which they are successful).  ‘Mommy wars’ are all around us.  Even in the autism community.  Vaccinate or not? Medication or not? Gluten free.  Casein free.  Dye free. Organic. Therapy choices.  Parenting styles. Sleep meds or melatonin?  The list goes on…and on…and on.  This life is difficult enough for a parent.  Why waste energy on stupid arguments.  Everyone should just focus on being the best parent they can be and leave others alone.

I’m remembering a phrase we tell our children all the time (or should)… “If you can’t say something nice, don’t say anything at all.”

Truth.

P.S. Now had this person written their comment as a respectful question (although some of it could never be written in a respectful wording), honestly wanting clarification, I would have answered it.  Instead, it will remain unanswered, in my trash bin.

 

 

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

21 Comments on Parent Wars: Autism Edition

  1. I just read your post. I want to thank you for it. I do not know how anyone can judge or say something hurtful. We try our best and sometimes get it right and other times not. You put into beautiful words my fears. I happened upon it accidentally I was looking for some answers for another problem I’m having with my 31 year old beautiful daughter who is non-verbal and a handful at times. She lives at home and is my middle child. I am trying so hard to keep her in the home but it’s difficult. I never imagined my retirement years like this. I know the day is coming but I’m so afraid for her and worry about someone abusing her so I suck it up and try again. I am 59 so I know my husband and I can’t handle it forever. I just don’t know if I’m helping or hurting her keeping her home. Anyway I forwarded your blog to her 2 siblings and they cried with me. It’s tough but we try

  2. I have an 8 year old and we are in a very similar situation. Whenever I need a good cry, I just picture his comforter in some other room somewhere and it tears me to pieces. But it will happen one day. Because, in addition to everything you say here, I will not live forever. And I intend to make sure my son is in a safe, loving place long before I die.
    Jennie B recently posted…An Open BookMy Profile

  3. I love and commend you for your honesty and love for your son 🙂 I have found even. I personally know of a family who placed a child in a home and have a son who can be extremely aggressive and violent without warning, toward (mostly me) and children his age. I was recently told how grateful someone was that I was honest with people and not trying to hide is behaviors and my response is really “I love my son enough and care enough for the people around him to want to take care”.
    I saw that video as well and it made me smile 🙂 So much love to you and your family.
    Love and patience doesn’t heal or change everything. Work, effort, planning with love and patience helps make the best future for our children
    Miss M recently posted…Emotional spending or structured getaway?My Profile

  4. Two of my favorite quotes…
    “What other people think of me is none of my business.” -RuPaul Andre Charles

    “If they ain’t paying your bills, pay them no mind.” -Ernestine Charles (Rupaul’s mother;)

  5. I am the mother of a beautiful and perfect boy with Autism. I am also a work program teacher at a center that provides day and residential treatment for adults with disabilities. Some days I look around and I pray so hard that my child doesn’t need this place. And then I stop and thank God for the center I work because I know that if he needs it, my son will have a place where he is loved and treated not as a client or a patient but as a family member. I see parents come through and tour our facility, hearts breaking that this is their child’s future. That their child isn’t going to college, or getting married and having a family of their own. It’s our battle as special needs parents, knowing our hopes and dreams have to change from the norm. But what every parent wants, no matter their child’s needs, is for our kids to grow up to be happy, healthy and safe. Please know there are places that want the same thing and only hire people who have the same values. God bless.

  6. I comment on this and am able to see do many different sides. Growing up I had a brother who had partial trisomy 13… There was also something else, but at that time doctors chalked it up to MR.. We know know it was autism. He was severely autistic. One of my parents biggest fears was where would Brad go if they died? They knew that their other 3 kids would grow and develop the way kids do.. But they were afraid to “burden” me with caring for my brother for life, but cringed at the thought of a group home. My parents never had to see any of this come to light as my brother died when he was 7 1/2, due to heart failure. Their fears struck something inside me though growing up. I went on to eventually work and then supervise at a large group home (29 individuals in a converted nursing home style facility). I advocated and cared for them like I would have for my brother. I tries to help keep families connected, to keep them at ease. I knew my parents were not the only parents with fears. I eventually moved on from the group home and now work at a DT&H facility.. My Job is helping individuals with disabilities, including autism, work in the community. I still advocate and fight for these individuals… I am constantly reminded of my brother in little things every day. Reading your story brought gears to me as a mom though. I am lucky to have an amazing daughter, named Taylor, who has no disabilities. I can now appreciate what you and my own parents thought and have cried about. I want to give you praise though… You are being realistic and looking at all options and putting your son FIRST. For someone to criticize you showing your raw fears and pain is disgusting. You’re doing your best and I commend you and send you love and strength to you and your family. Thank you for being a voice for your son and showing the real fears that some parents have.

  7. I found your blog from Autism Speaks on FB. so glad I did. My son, Jaccob is 13 and is on the high end of the spectrum and is verbal, and when I say verbal, I mean selectively and mostly more to others than me. He has so many of the same symptoms as Taylor. I can relate to the “outbursts” as his teachers call them. I have been fearful that they will insist he go into a home. I don’t think they can do that, but it is still a fear. I am a single mom and my daughter is 11. She is not Autistic and loves her brother and helps him so much, but I can often feel her trouble dealing. She loves having just me and her time and I do whatever I can to make that happen. So, I understand the effects on other children. I am waiting on copy of his IEP the BCIU just did as to what the goals are for his future. He is only 13 and they want to look to after 21. I can barely see past tomorrow! it was frustrating, but it is required. I have a theory as to why. That is a whole other thing…. I will look you up on FB. Thanks again and do what you feel is best. to quote Taylor Swift…haters gonna hate, hate, hate! so ignore as much as possible. They really are ignorant.

    My Best,
    Rebecca P. Link
    p.s. will come up Rebecca federman on FB.

    • Bahahaha, “Haters gonna hate, hate, hate”… so true! 🙂 You made my day! So good to hear from you. Keep fighting for your son. It’s so hard. Try and look into the K plan. I’m not sure what it might be called in your state; Maybe it’s under the same name, but it is a part of Medicare designed for people with disabilities and includes things like respite care. Maybe your son qualifies. if you haven’t hooked up with the county disability office, now is the time to do so.

  8. Thank-you thank-you thank-you!!! I really needed to read this. My son is going on 22….life is so difficult….and sometimes I feel very alone. So, THANK-YOU for posting!!

    • I’m so sorry life is so difficult. I understand completely. We just had a meeting about Taylor’s aggression, and his IEP is next month. What a way to dampen the spirits. I’m so glad this helped you. There are more of us out there.
      p.s. I added a plugin to allow people with blogs to have their most recent post added to the end of their comment. If you know of anyone who has a blog, it’s a great way to get exposure 🙂

  9. God bless you and your family!!! I have a 17 year old who has asperger’s diagnosed in 2010 he has come along way doing well in school and has job working at burger king (which is difficult at times for him) has to interact with people but helps him tremendously. I believe you will make the best decision for your son out of all the love you have!! Shannon

    • You may send me a PM on my Facebook page, The Stay At Home Soprano. I’m fairly certain you don’t have to like the page to send a message.

  10. I needed to read this. My autistic son is only 6 right now but I fear that someday I will have to make this decision. I thank you from the bottom of my heart for writing this, Sarah.

    • And I needed to read this.:) <3 So many people are taking this so literally. They must not be reading all the way to the bottom, where I state that these feelings, however real they seem, are not based in reality. This post was just to describe the raw emotion that might occur.

  11. Sarah I am so sorry someone posted a negative comment about you looking into a group home for your son. I have a mentally challenged brother (not by birth but he was a victim of a crime) and my parents found a group home for him when he was 18 and it was the best thing ever for him and for us as a family. We saw him almost every weekend and he THRIVED there. He had the structure he needed and there were 5 other kids in the home and he had so much fun with them and they did so many more fun things on the group home then we could provide for him in our home. My brother is almost 50 and still in the group home and STILL LOVES IT!!!!! It was absolutely the most loving thing we did for him. He really thrived and is the happiest person on the planet! Lol! And we still see him very often. I think you are doing the right thing- and don’t let people make you feel bad about it. It is your decision and you know what is right for your son and your family. Hang in there, I know it is very hard to deal with all of this on a daily basis.

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