#Autism: The guilt of special needs parenting

 

#Autism: The guilt of special needs parenting

One of the things that I find very difficult to cope with as a special needs parent, is the endless guilt. When I talk about guilt in this post, I know that it’s not a rational feeling but it’s always there and feels just as bad. Raising three boys on the #Autism Spectrum is by no means an easy task. I can’t tell you how many times I reach a point where I don’t believe that I can go on. There is just so much that constantly happens and nothing is ever a simple fix. It’s exhausting to say the absolute least.

While the exhaustion is well, exhausting, it’s not what troubles me the most. 

What troubles me the most is the endless amount of guilt I feel for not doing better. This guilt is present every second of every minute of every hour of every single day. Perhaps that sounds dramatic to some but I assure you it’s the truth, at least my truth. I’m human and I can only deal with so much at a time. I can also only deal with so much, for so long. After awhile, it becomes harder and harder to get up in the morning. It becomes more and more difficult to maintain hope that a better day will come.

People on the outside can’t understand what this is like. It’s not their fault either. It’s like trying to understand what it feels like to be dying of some horrible disease, when you aren’t. That not your fault either. This is just one of those things that you have to experience to understand. When I say that, I don’t mean it as a slam or put down either, it’s just one of those things.

I’m going to share a personal story, in order to help you better understand where this guilt comes from.

My story, my truth

My youngest child with Autism, Emmett, has become more and more difficult to live with. I love Emmett more than I could ever express in words, however, his behaviors, as of late, are just more than what I able to handle and push me closer and closer to the brink of insanity. It’s pretty safe to say that his behaviors affect his brothers and my wife in a similar way, however, in this post I’m speaking only for myself.

Emmett is severely speech and language delayed. This makes communication a constant struggle as well as a constant source of frustration for everyone, especially Emmett.  I can’t imagine what it’s like to be scared, angry, in pain or just hungry and not be able to convey that to those who could provide you with relief from those things. I don’t think frustrating even comes close or does it justice.

Over the past year or so, Emmett has made great strides in this area and is now basically able to carry on very basic, very limited conversations. I have become pretty fluent in Emmett’s means of communication, but it’s not easy. There are some things that he can communicate very well and many, many more that he can’t.

This, in and of itself, would be challenging enough on the very best of days. However, when you add two other boys with Autism to the mix, it becomes a struggle that I honestly can’t begin to describe. Emmett, over the past several months has begun presenting with more and more Autistic traits. He has become a perfectionist to the point of crippling his life. Everything has to be perfect of Emmett simply can’t move forward. Things like, breakfast, lunch and dinner typically involve blood curdling screaming, until we can figure out what he wants. Even when we manage to figure out what he wants, the challenge is often just beginning. We still have to get him to eat. If his food isn’t perfect or he perceives an imperfection….well…Houston, we have a problem.

He has also become very, very aggressive with his brothers, my wife (his mother) and even the dogs. He goes out of his way to cause trouble. Emmett will run upstairs simply to trash the rooms belonging to his brothers. He trashes their beds and empties their drawers.

I can’t figure out what the motive behind these things are. He gets plenty of positive attention, all the time.

His brothers don’t take this well and it sets into motion an unending cycle of chaos and screaming. It is so bad at times that we literally count the minutes to Friday evening, when he can possibly go to his grandparents house for the night. Last night was one of those Fridays that we long for all week.

The unending guilt

This is where the guilt comes in to play it’s nasty little game with me. I actually reach a point where I can’t wait until he’s gone. I so desperately need the screaming, fighting and chaos to stop that I actually look forward to him leaving. Most of the time, he loves going and his grandparents love to spend time with him. However,    there are times that he doesn’t want to go and I send him anyway. I know he’s going to have a good time once he’s  there and the rest of the Lost and Tired family, including myself, needs the break from his behaviors.

I always feel like a monster sending him away. I feel guilty for not having more patience with his behaviors and not having the strength to cope better without requiring him to leave.

I realize that this is an irrational guilt but it’s guilt nonetheless. The simple fact that I enjoy the time basking in a much quieter, more peaceful and less chaotic house, makes me feel even more guilty. I know it doesn’t make sense but at the same time, it does.

When the phone call comes the next morning, to let us know he’s on his way back, I always have mixed feelings. I do miss Emmett while he’s gone. What  I don’t miss however, is his behaviors. Unfortunately, at this point, Emmett and his behaviors are a package deal. In other words, I can’t have one with out the other and that’s where the mixed feelings come into play. I’m excited to see and hug my little Emmett John but at the same time, I know that everything is going to pick right back up where it left off.

It’s only a matter of time before the fighting, screaming and chaos takes hold of the Lost and Tired family once again.

It seems that each and every time this happens, I’m left with less and less, patients and ability to cope. The seconds, minutes, hours and days become much longer. I will reach a point where I even become resentful because of how these behavioral problems negatively affect my family, especially Lizze. The stress, noise and chaos, make what Lizze is already going through, that much worse. It’s not like when everything slows down, she gets better. All of this has an accumulative affect on her health.

The reality is that Emmett’s behaviors are not the only one to blame here. Elliott’s constant anxiety adds a great deal to the mix as does everything that Gavin has going on, which is a lot.  I just choose to focus on one aspect of this for the purposes of this post.

As a father, I can’t tell you just how horrible I feel when I experience the feelings of resentment. I know that I’m only human and that it’s perfectly normal to feel that way, especially when faced with the struggles that I am faced with, every single day of my life. Having said that, I’m not absolved of any guilt. I still feel like a bad father or a failure as a parent when I get to this point.

The reality of the situation

After me writing everything above and after you have finished reading it, we are left with reality. As a special needs father, I prefer to always deal with the reality of a situation. I would rather know what I’m up against than constantly wonder whats around the next corner.

For me, the reality of the special needs parenting situation is that nothing is ever going to be easy.  Life is always going to be a cornucopia of challenges, heartache, setbacks, steps forward and even the occasional victory. I don’t think that I was created with limitless ability, patience or resources needed to better cope. In fact, I know I wasn’t. Despite having a job that often requires superhuman abilities, I only human and therefore can only do so much.

I have found that guilt is going to be an inevitable part of my journey. Whether the guilt is warranted or not, it will more than likely, always be there.

No matter how much I put into this journey, I will always end up a day late and a dollar short. However, it won’t be for lack of trying, that much I can swear to. I have to learn to understand and even embrace my limitations. They aren’t necessarily a sign of weakness or failure. In fact, it’s entirely possible these limitations are in place for a reason. Maybe they help to keep me centered and in check.

Honestly, if these limitations were not there, I would have probably run myself into the ground, far worse than I already have, trying to do and be, everything for my family. These limitations, force me to stop and take care of myself, otherwise I would likely never stop. Perhaps it’s like a checks and balances kinda thing.

Regardless of anything, the guilt still remains, because I love my family and I know they deserve so much more than I can do for them. While I don’t relish the idea of always feeling guilty, it’s going to be one of those crosses I have to bare. Maybe someday, I can find a way to cut myself some slack. However, until then, I just have to keep on keeping on.

 

0 0 votes
Article Rating
Subscribe
Notify of
guest

This site uses Akismet to reduce spam. Learn how your comment data is processed.

50 Comments
most voted
newest oldest
Inline Feedbacks
View all comments
Sarah Doyle

I tracked down her facebook page..

Cassandra Stone Boland

Yes does anyone have a number for this person or other means of contacting her?

Jennifer Hauser

I tried to comment on your site with the suicide hotline number, but for some reason I can’t leave a comment from my tablet or laptop. Could you give her that number for me? 1-800-273-8255

April Roga

Do you have any way to get in touch with her???

ClementineKruczynski

Don’t….trust me don’t do anything other then find yourself a good person to talk to. My son’s father committed suicide shortly before his second birthday, leaving behind my son and his half sister, their mothers, and six siblings and their spouses and children. I don’t know how it has been for most of them, but it was brutal for me. There are support groups and one on one therapists that can and will help you. Finding the right placement for your child is key. You should legally be allowed to do this. If not there are legal options you can take. Report the possible abuse of your son. There are people that handle the problems you are talking about. I can’t remember exactly who at the moment, worry for you and waking up due to a headache have my brain a little fuzzy. Depending on where you are in New Jersey I know there are some great programs and if they arent near you I have a friend out there that could recommend so or where you can get the help to handle all of this.

jaxxma

None of us knew what was coming and while many would have probably continued with the pregnancy that brought us our challenged children irrespective of their issues, some of us had actively done all we could to have a baby.  We had a son in 96 who died shortly after birth. Immediately after the funeral I made it my mission to have another baby, I was not sane at the time and would not listen to anyone who suggested I take time to recover and find out more about what had led to Alex’s death. By 98 our son was born, within weeks I knew something was wrong, I called it the happy flappy nappy moments – later identified as stimmming….you all know where we went from there.  my mom was then diagnosed with MS and her husband died within 6 months of undiagnosed Brian cancer (he didn’t want to worry anyone!).  she lives with us now and is bedbound.  We live in an emerging economy with a huge underserviced population and limited special needs support, I have a fulltime job that involves long hours and travel and my husband edits from home. We have a reasonable standard of living and a household help three times a week.  Jack is in a school suited to children and teens with much more profound issues than he has and is not happy, however this the only state supported school for autism in our city (high school) and we cannot afford private education.  We work hard, we  don’t go on holidays, we sleep when we can and just get on with it.
That all sounds normal as things can generally are in these situations right?  This is where my guilt comes in, I am a recovering alcoholic and addict, I have been sober for 22 years but still smoke weed to keep me calm, only when my child and mother are asleep and settled.  I know that I cannot function in a constant state of guilt, my addictions may well have been at the root of J’s issues, my addictive personality and need for order in recovery should actually help us create a much needed routine driven environment BUT none of but actually applies in the real world.  One of the things guilt does is skew others perspectives, I believe that my drug and alcohol use contributed to J’s issues and that gave everyone around me a useful peg to hang his diagnosis on.  Not immediately, not intentionally, but it has become the foundation of the challenges in my relationship with mu husband and other family members. This makes me defensive and occasionally aggressive toward others who always seem to have the theoretical answers but don’t live the life we do.  

I suppose what I am trying to say is among the many types of guilt special needs parents carry every day is to what degree we believe we created the situation our children found themselves in, I know intellectually that my age, my husbands age and the general upswing ASD diagnoses, environmental issues and statistical “bad luck” probably had more to do with J being the magic little person he is than anything else BUT I took responsibility and shouldered the guilt long before I knew how much more was to come. We love our children, we do everything we can for them, and despite the fact that they may not speak to us, we know them better than anyone else ever and will do anything and everything  to make their lives meaningful and fulfilled we also have this whisper of guilt that its because of us they are struggling.  My many friends with NT kids have similar struggles, more socially open and discussed, with wider support and a greater degree of understanding and acceptance of the drink, drug and social problems their kids are dealing with, but what I do see is a lack of intimacy and trust that I have with my son. J may live in his own world, but it is a kinder, softer place that accepts him in a way that his NT peers never have. This is long and rambling but mainly I am trying to say we have guilt, it can cripple us and our relationships if we let it… but we also have a relationship with our kids (especially aspies) that others would envy if they ever understood them.    

Guilt can and does kill, it kills love, relationships, trust, self worth and belief, it kills spontaneity, fun and enjoyment… these are things we all deserve and need to function. If we judge ourselves harshly believe me there is a long queue of people just waiting to jump on the bandwagon to beat us up… if we shoulder the blame, take the load they are only too willing to let that happen, it makes them feel better about themselves. We also create  a situation that undermines the achievements and development of our children, so all I can say is love your son, do what you can, be able to go to bed knowing you did what you could that day and that you will do it all again tomorrow.  No-one else can give your child what you can – unconditional love, and he is the only person who can give that back to you… it may not be every day, there are days that I hate J’s drama, but never hate him or myself any more… but if you are doing everything you can then you deserve to be kinder to yourself, you have brought him this far and you will get him to where he – and he- need to be. Please don’t hurt yourself, Eddie needs you and you deserve to give yourself a break. You are in my thoughts today and I hope you find the strength you need to make it through another day.

MeLaniSoliMaysenhalder

LisamarieNyahayTracey  Hey Lisa, Sorry that absence for a few.  There is a suicide hotline, which you may be well aware of.  But it doesn’t hurt to share for anyone who may find it useful. 800-273-8255
As Lynn mentioned, guilt is a hard thing to feel. You have done what you could at the time. There are lots of autistic adults whom are also parents that would be glad to share their experiences with you.  If you are in too much of a crisis situation right now, then please, go to a hospital or call a suicide line anonymously.  After the raw emotions settle some … you may want to join any number of us on FB autistic groups.  You’d be surprised how much you can learn and find others who do understand. In addition, as autistic adults and parents have lived the experience, you can get some great suggestions which could ultimately help Eddie (and his family) in many ways.  It’s not doom and gloom as some portray.  Finding and hearing from other autistic people could be very hopeful for you.
Keeping you in my thoughts!

LynnMurray

LisamarieNyahayTracey  Guilt is a hard thing to live with, but please don’t do anything your children will regret. Please don’t try to bear this alone. See a counselor, see a pastor. If you are having trouble and you think you are going to hurt yourself, please go to the ER. You’ve done the best you could for Eddie and for your other kids.

MeLaniSoliMaysenhalder

LisamarieNyahayTracey  Lisa,
Please give yourself and all of your children, some time. A few moments if that feels fine, but preferably time for those of us who care to speak or chat with you; and for you to catch your breath and get a little relief from the guilt or pain.
I am in an autistic family. Yes, we exist and all is not bad.  It can be a roller coaster and at times more downs than we feel able to deal with. It may sound cliche, but things do get better.
My son is 24, a few years older than yours. Please feel welcome to add me on FB at MeLani Soli Maysenhalder or email me at mmaysen at the gmail ending. I am typically very uncomfortable with one on one chats, so you must know I am sincere. You are not alone out here.  There are thousands, even more, of us who have been in similar situations.
Hugs to you
MeLani

MeLaniSoliMaysenhalder

LisamarieNyahayTracey   I once, whether well advised or not, spilled my feelings of guilt to my son.  He gave me a shocked look.  You see, in his mind, he did not hold me responsible for his challenges, nor his happiness. 😉  He is far more accepting of life than I was back in that time.
The guilt can be eased. I am looking forward to hearing from you via the group, Rob Gorski’s wonderful blog here, or in other ways.

Ruth

LisamarieNyahayTracey  You’ve so very obviously done everything possible you can do for your son and have no reason to feel guilty for that. I remember when I first got pregnant and had no thoughts of autism or special needs, my GP said to me “remember this, parenting is ALL about guilt” and do you know, he was right and he was talking about every parent and every child. We have more challenges than most and deserve to feel less guilt but it it what it is. You have recounted some of the positive things you have done for your son and there are probably lots you haven’t mentioned, not to mind what you’ve done for your other 3 children. Please focus on these and not on what you can’t control. You have better for your son then anyone else could have done. Please remember that and stay safe.xx

Lost and Tired

LisamarieNyahayTracey  Please don’t hurt yourself.  I want you to know that you’re not alone.  Is there anything we can do as a community to help you?

LisamarieNyahayTracey

i want to die, i want to give in.  My son will be 20 and is like a 4 year old.  I had to place him and hate myself.  He overdosed on my exhusbands meds and was in the ICU.  He prob. thought they were candy.  My  son is so big we cant have him live with me, he is such a wonderful person, but cant say things very well he needs, usuallly if at all , one word.   My son had sentences when he was 2 because i recognized it early and had a full blown aba program 40 hr per week.  Remember this is 20 years ago.  Schools not as willing to pay.  he was doing very very well.  I thought he would recover.   We moved to NJ because thats were i heard the up and coming programs were and it literally took so much time to get Eddie a home program and nnow 2 kids later cant do the 1;1 by myself that I always did before.  When i get him from the group home I’m guilty.  When i bring him back to the group home I’m guilty plus its 1.5 hours away.   He was living with the ex the last year so Eddie wouldn’t accidentally hurt or knock any of my other 3 kids down.  And this was supposed to be temporary.  Well, my ex wont let me get him on another school group/home waiting list.  I’ve even found bruises (from them  holding him down in the ER)  I was not even important enough to call and tell my son is in the ER.  His teeth are alway grittty.  clothes to small.  Even though he gets a stipend it would be surprising to know what they use it on.  Oh LORD i have prayed,  why these children why?   Sometimes I can actually thing about hanging myself to take the pain away, but in the long run, the only reason I stay alive is for my other children. 

I am dropping hin off in 20 minutes after easter now and all i want to do is throw up and hang from a tree because i cant take this heartshattering guilt!!!!!!!!!!!!!!!!!!

Kylie

Thank you for your post. I have a 5 year old son with autism and the guilt cripples me. Guilt for enjoying dropping him off at school, guilt for not having the means (financial/time) to give him the therapy that he needs & guilt for wanting to do something for myself when I can even afford to give him the therapy that he needs. I am at breaking point looking for a balance. Your post has let me believe that not only is it ok to spend time/money on yourself but that its absolutely necessary to maintain a healthy balance. Thank you for your insight. I now think as a special needs parent that I am “normal” and the guilt will be forever a part of the journey. Its just something that comes with the job that I was chosen to do. Thank you 🙂

Raynette Jones

i feel guilty for things that happended 10 years ago that i cant let go of. working on it but it is the ptsd

Maria Hall

Call and nag them. I had to when I was involved with them. I think it is horrible that they get people all hopeful then say there is no money etc. But I did get lots of good ideas and somewhat of a game plan from them for Jake.

Lost and Tired

Actually, they seem to have dropped us.

Maria Hall

Can you get family council to ante up for behavior therapy like aba our even mst for your family? You sound like you could use the help and they should be able to help with it as well as some respite services.

PennyHiggins

I am right with you, my friend. The guilt is horrible. The difficulties are inescapable. I just want a break. I’m glad I’m not alone in this…

Beth

This was a great post for me to read.  I'm a few months away from being certified as a special educator.  In our classes, we talk about the stressors on families, and the everyday tasks that can be stressful.  We haven't talked a great deal about guilt, other than in our talk about how families may feel when their children have been diagnosed with a special need.  In a reflection on this post, I wrote about how your job is like that of a detective–you figure out what your children want and need, because communication is a struggle.  Unlike detectives, however, your job is 24/7.  You don't get to take vacations or get away from the job.  Even when Emmett goes to his grandparents' house, you still have 2 other kids to take care of.  Anyway, sorry for the rant, but I wanted to see if you had any advice for teachers (or soon-to-be-teachers) on working with families.  Thanks!

Batty

@Beth–as a former teacher and parent of children with autism and multiple other special needs, my recommendation to you as a new SE teacher, I suggest you communicate with parents via email or other format that doesn't need to go via the child.  On both sides of the coin, I have found few communications make it home on a regular basis with children over the grade of kindergarten. Even with a child in a day treatment program that needs to communicate with me daily, I still run into problems if something is sent home to me via my son.  
Second point–HOMEWORK is almost impossible for SN parents to ensure their child completes it and gets it back to the school in a timely fashion.  Kids with autism often have parents who are on the spectrum.  Executive function often is impaired.  Homework often adds an unnecessary stressor to an already complex situation.  As a SE teacher I tried to minimize homework for my students and to make my  lessons as interesting as possible with frequent pauses for summing up in student notes so that learning was taking place without homework being necessary.   Just my humble opinion.
Karen

Carlyoung

@Batty @Beth
 
I agree with Karen.
As a parent of children with special needs, nothing is more frustrating than to have the school start using a "communication with parents notebook" and then entrust said notebook with the child each day.  I would much rather receive via email.  If the parent doesn't have email, help them setup a free gmail account,  if they don't have a computer, see if you can arrange an alternative.  I don't know what the alternative would be, but it is hard enough to get the kids to bring stuff home, without making them bring stuff home that they think reflects poorly on them.And in the evenings, we have so many other challenges to deal with, that we rarely get time to look at homework, let alone read the communication from the teacher. On the other hand.  In the communication with the teacher, i always include information about how his night and morning went.  Often events that occur in the morning when they wake up can affect the whole day so we have found it is beneficial for the teachers to know that info.  Again, if you pass things back and forth with the child, you may or may not receive the information.just my thoughts. 🙂 if you have questions ask an experienced parent. 🙂 My wife is a special education teacher as well as a parent of children with special needs, so ask away. if I can't answer it, I can always ask her. Carl – whynotfathers

kenneybf

@Carlyoung  @Batty   
Wow, such great advice!  We're always talking about communication in our classes, and making sure we are accessible in many ways and at many times.  We are always talking about what would go home with the kid (revised IEP, tests/scores, etc.), but you're right…the chances of that getting home are slim.  I wonder if scanning and emailing papers would work…  
 
I also like the suggestion of helping to set up an email account!  With technology, even something like Google Docs (now Google Drive), could be beneficial in communicating, as anyone invited can create an ongoing commentary, editing or updating as necessary.
 
Again, thanks for the great suggestions!
Beth

Batty

@kenneybf  @Carlyoung   Another  problem I have never seen addressed is the confidentiality of IEPs, Triennial Review results and how these should never be given to a child to bring home.  If the child with SN goes home on a bus or travels with anyone other than a parent and is carrying confidential documents, there is a risk that the child will lose or share the docs with others not meant to see them.  Schools could possibly be held responsible for such documents being made public, however inadvertent that exposure may be.  I have a child attending a day treatment program where he receives instruction in his core curriculum.  He is 16 and of a high IQ, but very  poor organizational skills and poor memory when it come to assignments that need to be completed.  I have had to make arrangements for his therapist to email me daily if there is a homework assignment for that night.  That is the only way I get pulled into the loop,  Otherwise I wouldn’t know about assignments until the end of the grading period.

kenneybf

@Batty Thanks so much, Karen!  We're always talking about communication in our classes, and making sure we are accessible in many ways and at many times.  We are always talking about what would go home with the kid (revised IEP, tests/scores, etc.), but you're right…the chances of that getting home are slim.  I wonder if scanning and emailing papers would work…

JoshuasMom

Hi
I too parent a child with autism, I have struggled every day since his diagnosis six years ago with the feelings that I can do enough or be the parent he needs me to be. On top of that I deal with criticism from an ex who believes that his methods of parenting are best and takes every opportunity to tell me what I'm not doing right. I try to tell myself "one day, one choice at a time" but it's very hard as we all know. Praying for all of us, parents of these special children.

lostandtired

@JoshuasMom stay strong and keep fighting the good fight. We're all here for you. 🙂

Batty

I feel your pain;  I face the same struggle with 5 children having disabilities ranging from severe ADHD to CP and autism, with co-morbid mental health issues and neurological differences.  They range in age from 16 to 24 years and live in settings from home (16 & 20 yo) to residential treatment facility (18) to sleeping on a friend's floor (21) to having his own place with friends (24).  The guilt I struggled with prior to placing my 18 yo in a treatment facility has not abated even 9 months later.  I feel guilty that she is there.  I feel guilty that things got so out of control with her that the entire household became toxic with her rancor and mean-spiritedness towards humans and animals. Since she has been in residential, she has been learning new behaviors, but can only be home (for a weekend visit)  for 8-10 hrs before she reverts to her old behaviors.  I feel guilt that I cannot be a rigid as the staff in the facility, but I cannot lock down the entire house the way they can the facility.  I have no hidden video cameras in my house to watch her every move, so I can't catch her binge eating, or sneaking out to meet someone forbidden, or engaging in self injurious behaviors (cutting, etc).  But then I listen to the silence when she has gone after a weekend of shouting, banging, breaking, hitting, and screaming,  The silence absorbs a little of my guilt, but only a very little.  Her siblings miss her when she is gone, but can't wait for her to leave again when she is home on a visit.  She bullies everyone she comes into contact with at home, but is an angel when in residential.  So my guilt over not being the kind of mother she needs hits me right between the eyes every single time.

lostandtired

@Batty We are in a similar boat. We have made the decision to place our 12 year old as well. The guilt is eating me alive and we haven't even done anything yet. Hang in there. You are alone.

namaste88

I often feel guilt as well.  My son is a young adult with ASD, has no siblings, and one cousin many miles away.  I feel guilt over losing babies to miscarriages and ectopic pregnancies, for without those my son would have had at least one sibling or more.  I feel guilt for not realizing he had Asperger's until later, probably because my husband and I have so many aspie traits ourselves.   I feel guilt about not being able to make his life easier for him, despite the constant reading, research, activism, and immersing myself in everything autism.  I feel guilt for my own chronic illnesses as they only take time away from my family and leave me unable to be all I should be.  I am now crying as I write this and realize just how much this guilt weighs on my soul.

lostandtired

 @namaste88 I'm so sorry. I didn't mean to make you cry. As parents, I think we feel guilt for everything that happens whether we have control or not. I know how guilt can weigh on your soul. hang in there. I'm always here if you need to talk. 🙂

DeborahWigginSnyder

Rob, although I have an autistic son, my guilt isn't usually over things we deal with regarding him. There are some things that cause me guilt–maybe I don't make his life structured enough, maybe I'm not teaching him to be self-sufficient, teaching him that he has to follow directions that others give him. But there is even more guilt over my non-special needs kids. I wonder if they are getting enough attention when I'm dealing with Zeke. Since the other 3 are girls, I wonder if they think I'm playing favorites because he's a boy. Of course, they are all quite a bit older than him, so they do understand that he needs different attention, but they also know that he is extremely close to me. And then there is the middle daughter who has been in trouble since she was 12. I don't mean just a little trouble. I mean BIG trouble. Stuff that would have sent her to a detention center if we hadn't finally put her in a Christian boarding home for troubled girls. She was there for 2 and a half years, and I felt guilty because I was relieved to have her gone! And then she graduated and came home and for a month things were great. But we still were all waiting, fearful that she would go back to the old ways, fearful that she might hurt Zeke or that she might bring home someone who might hurt him or her younger sister. Even though she seemed to have changed, it was still a constant watching and waiting game. And a month later, she walked out and didn't come home. She's been gone since July 9. I don't know where she is, but I do know that she is "safe." She texted us and let us know that she is living with a guy 10 years older than her, twice divorced. And I feel guilty! Guilty that I couldn't stop her from going, guilty that I'm relieved not to have to worry about her hurting anyone here, and guilty because Zeke misses her so much and I can't explain to him why she's gone. I know that I am blessed that Zeke is so laid back. My husband has a younger brother with CP and he has always been very aggressive, even as a young child. Zeke has never been–he lets the little neighbor kids bully him (and of course that makes me feel guilty too.) I do as much as possible to keep things on an even keel here so that Zeke doesn't get stressed, but that's not always possible. You know that, probably better than I do. And then there is guilt over why Zeke is autistic. My mom told me 20 years ago, that our oldest son was born with congenital heart problems because of my being overweight. (He died after 11 days.) Now studies seem to indicate that overweight moms are more likely to have autistic kids. Is it possible that my weight caused his autism? It runs in our family, though we didn't realize it til after he was born, and some of his cousins with ASD don't have overweight moms, so I assume that's false guilt, but it's still there. I understand the guilt–but remember that all parents have guilty feelings over something their kids do. It's harder on parents of special kids because we are always so exhausted that the guilt is more difficult to fight off. I hope that being able to communicate your burdens helps relieve some of the stress! I know it does for me. And it helps a lot to know that I'm not the only one with those feelings. Just keep on keeping on! 

lostandtired

 @DeborahWigginSnyder I totally understand. I feel guilty all the time about the same things. 

Carlyoung

As perverse as it sounds, we could have a guilt theme week on most of our blogs.  I feel guilty that… I am up all night with my son, and needing to sleep during the day. I feel guilty that my wife works while I am on disability.  I feel guilty because the only tone my son understands is loud.  If I am not loud, he doesn't hear me, and there isn't a damn thing wrong with his hearing.I feel guilty that my other kids spend most of their time hiding in their bedrooms rather than dealing with our youngest son and his behaviors. I feel guilty that I actually am looking forward to the day he leaves for placement, and then I will feel guilty for making him go there.I think I need a psychiatrist of my own, but then I would feel guilty for taking time away from the family. 

lostandtired

 @Carlyoung Wow.. I could have written that myself. 

Amy

You know I of all people understand. I'm in the leaky boat with you, and I'm holding your hand.
My recent post this gets gross

Valerie

Thank you so much for writing this. I really feel like I could have written it myself. Only I have only one son who is 2. I hope to maybe find a counselor to help deal. Kinda nervous bout doing that though. Idk I don’t have anyone to talk to. I am doing this on my own.

Marc Tomor via Faceb

Rob….u hit the nail on the head…your guilt is so unwarranted and yet you feel like a failure for actually taking time for yourself to unwind.I say this with as much conviction I can muster …you sir are an excellent father to your boys and I'm sure Liz thanks her lucky stars she has such a quality person to share the journey with.I know about the guilt ..I repair things by nature but I haven't been able to fix my son and it eats at me every damn minute I'm awake and a few when I'm not.You are allowed to take time for you my friend ….u earn it!!

Wendy

I think we special needs parents feel this guilt at some point in a different areas. I always feel guilty for not doing more earlier. I take on all the doctor appointments and waiver requests and paperwork. That along with my job and trying to get my degree in education, I just can't keep up. Something has to fall behind, usually it's myself and the house. I never get time to myself – hubby make sure he gets out at least one night a week to play cards with the guys. There are days I wonder driving home from work what would happen if I just kept driving. What would they do? Maybe one I will just do it. They have to be able to survive with out me for at least a weekend.

Christine

Rob,
Thanks for sharing. I'm raising a special needs son on my own. There are no living grandparents and his dad is deceased. Sometimes my biggest resentment is trying to get what family is around to understand that I need a break. They just don't get it. My son is now 16 and recently diagnosed with ASD, besides having seizures. He cannot be left alone. Finding help and care is getting harder and more expensive. I can't beat myself up with guilt, but I understand the feeling when he's somewhere else and I'm enjoying some quiet, down time. Thanks again for providing a place for "us" to share.

Dana Meijler-Gross

Rob,

There is nothing AT ALL wrong from needing a break. Raising a special needs kid is tough and you and your wife are raising 3. You are human and you are doing everything you can in an impossible situation, you and your wife are an inspiration.

Sending you many hugs!

keri

We have an aspie son who is 11 years of age, 2 years ago we tried to send him on a church youth camp for 4 nights 5 days. This would have been the first break in 9 years we had from him, we would only have our other 2 younger kids. Day one passed no phone call, quiet evening at home, so far so good. Day 2 came and I thought" Finally he can go somewhere!" then at 5pm we got the phone call to pick him up. I was devastated! We moved from Arizona to Texas where my husband got a job, and at our new church ran into a family with an Aspie son who informed us about special needs camps designed to handle kids and not call the parents. For 1 week of peace and quiet $1200 for him. You may want to check out camps for special needs kids, they are pricey, we don't have the money this year, but next year we will be saving. God bless you.

Pat

Dear Rob,
You don't have to have a child with Autism to need a break from the world, much less the demands of family. I am so glad you have a place to share, so we all can benefit. I know how important it is to have a break, to recharge. If you didn't, can you imagine how hard it would be? Most moms ( maybe dads too!) could tell you that we feel much the same way; need the break, and feel guilty for needing it, much less taking one!
Please find a way to cut yourself slack, and to give yourself, and your family a hug. You are my hero.
My recent post Conventions

Erik van Rossum

You Rob and all those parents like you- Do NOT – NOT – NOT – feel guilty – As long as you keep getting up after falling- You Are HUMANS. That's all- To us children in the Spectrum, You Are Humans — With sometimes to us Angelic qualities, because you keep on trying and doing and you keep on standing up again after falling for us, your children. You Are Human- As long as you keep on going, you do not have ány reason to feel guilty. And even if you give up after such an effort— There is nothing to forgive, because you did where others even didn't try.

Erik van Rossum

Look at yourself, you parents of us children in the Spectrum—— No—– LÓÓK at yourself…………….! You people, you Rob, you try to read and know all there is to know to help your kids. You have this blog. You visit X-times more other places and communities to exchange knowledge and experiences. You do not sleep, eat or take time for yourself and put all of your energy into the wellbeing of your kids. And No One prepared you for this. No One provided you with any education for this. No One told you well in advance to go and prepare yourself for this. And so you just learn to walk just by trying to walk. with lots of falling, but mainly with getting up more times than you fall.

Erik van Rossum

Rob STOP! Stóp feeling guilty!!! Of course, I do understand you feeling guilty, but hey man, give yourself some slack here- Most parents of children without this kind of problems at one time or another already will ask themselves where they went wrong, what they did for their otherwise normal kid(s) to derail so much and to go so much against the good will and wisdom and energy of the parents. And they don't even have the extra challenge of children in the Spectrum.

Erica

I totally understand. I watched one of the videos of Emmett and it reminded me of my daughter. She doesn't scream like he does but the speech problem is similar. I look forward to her days in preschool and I feel bad wishing that she would be there for more than three hours, but constantly having to translate her English to English gives me a headache.

Jenn50

You are not alone. I feel CONSTANT guilt. My daughter's behaviours make her pretty tough to live with, and she has two older brothers, who are thankfully, neurotypical. I spend every waking second (and most of my sleeping seconds!) feeling guilty about not doing enough for her, about what this has done to her brothers, about being SO VERY GRATEFUL to drop her off at her therapy program, or to escape from the house alone for a little while. I know that it's normal and appropriate to want a break, but I feel guilty for the feelings that let me know I need one. There's only so much screaming, chaos, and feces a person can take without becoming angry and resentful, no matter how much I love my baby girl, and as a parent, it feels very wrong to want and need her to be ANYWHERE ELSE RIGHT NOW!

Bonnie Stewart

Yes. the world is broken indeed when wonderful people like you go around feeling loads of false guilt, and totally irresponsible people seem to feel no twinge of guilt, whatsoever. I think many of us special needs parents from time to time are quite shocked at the thoughts that go through our own heads.

One thing I really believe, though I don't practice it as completely as I would like is that intentional, yes, intentional self-acceptance is one of the best gifts I can give my loved ones. If you have not done so already, sometime go to mercola.com and look up some information about the EFT, (emotional freedom technique), It is a very practical, intentional way of getting rid of paralyzing negativity.

False guilt is a vortex with no bottom. Please, please get some distance from it anyway you can. You just can't go there-go somewhere else, even if it's just a TV show. My husband and I escape when we can, even if it is just our bedroom with a TV show or movie at 1:00 am.

It is so hard not to be resentful when we feel that our very self has been erased, and scribbled over by a child again and again. Other parents and their kids live; we exist. So I am kind to the shell of my former self-and I find that it makes me tender toward other things and people that are empty, overlooked and forgotten. I am a fixer-upper and have been ever since the day when I was very small and found a pathetic doll in someones yard. I adopted it.

We live in a throw-away society and if we are not careful, we throw ourselves away. So all I am saying is hang onto yourself and be your own best friend. Your family will love you even more.

Dearest_Nikky

Plain and simple, if you can't survive – neither can they. If the evening off from Mr. EJ is what you all need – it's what you need. 😉 <3

50
0
Would love your thoughts, please comment.x
()
x
%d bloggers like this: