Stress, PTSD, and Parents of Kids with Special Needs

by Liz MatheisFeb 20, 2015In Parents, PTSD58 comments

PTSD and Parents of kids with special needs are a reality in many families. This article gives parents advice on how to cope with their own PTSD issues.

Photo Credit: satit_srihin at www.freedigitalphotos.net

Recent studies have shown that parents of kids with special needs are at a greater risk of developing Post Traumatic Stress Disorder (PTSD) than are parents of typical kids. Over the next weeks, Different Dream will address the subject of PTSD and parents of kids with special needs. In today’s post guest blogger, Dr. Liz Matheis offers information and advice to parents who suspect they have PTSD about how to manage day to day.

Stress, PTSD and Parents of Kids with Special Needs

As a professional, the initial phone call comes with a focus on the child with Autism Spectrum Disorder (ASD). However, I have often asked during our first appointment, “How are you, as the parent, doing?” Several parents have looked at me somewhat crooked and have said either, “Fine,” or “No one has ever asked me how I’m doing.” As a parent of a child with ASD, the process of gaining a diagnosis and then living and treating can be overwhelming and often traumatizing. With that said, it is safe to say that many parents of children with ASD are suffering from Post Traumatic Stress Disorder (PTSD).

What Is PTSD and What Are the Signs?

PTSD is an anxiety-based disorder that occurs when a person has experienced trauma, witnessed trauma, has been exposed to the details of a traumatic event experienced by another person, or by repeated exposure to trauma, such as a trauma professional. Signs and symptoms include flashbacks, nightmares, inability to concentrate, prolonged distress, and physiological reactivity (that is jumpy or hyper-vigilant).

How Does a Parent Develop PTSD?

For the parent of a child with ASD, the initial trauma comes from realizing that ‘something isn’t right’ with her child, researching, and ultimately gaining the diagnosis. This trauma is perpetuated when a parent begins to mourn and grieve the loss of the child that he thought he would have. The next phase is gaining treatment and not being entirely sure how it will work and what the outcome will be. Then, adolescence hits and some children with ASD become aggressive. Some kids have been aggressive all along. As a result, parents are left defending themselves, hiding bruises, and staying at home so that ‘no one else’ can witness the physical aggression. This becomes even more complicated when there are other children in the home who parents struggle to give attention, nurturance and time to but can’t because taking care of a child with ASD can sometimes be a 24 hour job.

Raising a child with ASD can also take a toll on a marriage. Parents are left to care with little time for themselves as a couple. Finding someone else to care for the child is difficult. That caretaker or babysitter needs to be trained and be okay with some physical aggression and meltdowns. And the icing on the cake is that some families become one income households so that one parent can take care of the multiple needs and therapies for the child with ASD, meaning that money can be tight, which is another source of distress for parents. Sometimes the marriage doesn’t survive.

Parents are also left anticipating what might trigger their child and are constantly accommodating and modifying the environment to help their child to stay calm or regulated. As children with ASD get older, some parents of children who are aggressive have to make a very tough decision about whether or not to find a residential program.

Throughout this process that takes place over years and years, parents become burned out, distressed, anxious, depressed and sometimes even feel hopeless and helpless.

How to Gain Help for PTSD

For those families that are eligible, finding community and state-based resources such as Division of Developmental Disabilities (DDD) which can offer respite care. That is, for a few hours per month, a DDD representative will take care of the child with ASD so that parents can have a break. (To find the DDD in your state, do an internet search with the terms “division of developmental disabilities” and the name of your state.)

For parents who feel distressed, seek help. Consult with a psychologist to help you process your emotions and your experience, and offer you support throughout your journey. If feelings of nervousness or sadness become overwhelming, it is okay to consult with a psychiatrist for anti-anxiety or anti-depressant medication. It is okay for parents to seek help for themselves instead of maintaining a 100% focus on their child with ASD.
If your child’s school offers parent support groups, participate in them. Talk to the other parents who are also experiencing the same types of stressors and emotions. Find solace in each other. Have play dates with each other. Offer respite to each other.

Your Experience with PTSD and Parents of Kids with Special Needs?

If you have advice for stressed-out parents of kids with special needs or if you think you have PTSD, leave a comment in the box below. You can also contact me via email using this form.

PS: If you like what you find at DifferentDream.com, can subscribe to the RSS feed and the quarterly newsletter in the boxes at the top, right corner of this page.

By Liz Matheis

Dr. Liz Matheis is a clinical psychologist and school psychologist in Parsippany, NJ. She offers support, assessments, and advocacy for children who are managing Autism Spectrum Disorders, ADHD, learning disabilities, and behavioral difficulties, as well as their families. She is also a contributor to several popular magazines. Visit www.psychedconsult.com for more information.

58 Comments

Jolene on March 4, 2019 at 2:04 pm

Lucy, I’m so sorry for what you and your daughter are dealing with. The losses when she was young could cause PTSD, and ADHD is often a misdiagnosis for what is really PTSD. I encourage you to look for treatment for your daughter soon. The sooner treatment occurs, the better it works. Jolene
Lucy Panasiuk on February 28, 2019 at 12:54 pm

I am a 52 year old chronically ill single parent mum with a 10 year old ADHD daughter. I think i have PTSD from childhood too. I think she has an emotional/behavioural disorder too because of so much loss in her life since 3.5 years of age. Not parents. Grandparents, my PA/Carers and our dog Poppy and Dad left at 3.5 years old. Behaviour is horrendous now.
Jolene on November 19, 2018 at 2:21 pm

Angela, you have every right to be exhausted. Your caregiving duties must feel overwhelming. Since your husband is a veteran, I encourage you to call the nearest VA hospital and ask to speak to a social worker. Explain what you are dealing with and ask them to recommend services that may be able to help you. Also, if your children are in school, talk to a school guidance counselor for recommendations. Finally, see if any churches in your area have a special needs ministry. Someone there may be able to point you to services available in your area. Jolene
Angela on November 5, 2018 at 5:50 pm

What about a husband veteran with PTSD, two autistic kids a 7 years Old boy and a 3 year old girl. I come from a different country, the shock of change of cultureand when I found out about my oldest son has ASD my mom passed away and I could not travel to tell her the last goodbye. Dealing with my husband has been so hard, he’s got social phobia so he don’t like to be around people, we don’t go nowhere, my kids have sensory issues, the lack of sleep for many years due to my ASD kids had sleeping path disorder and sometimes I feel that I’m done but no family, his family don’t care and my family is abroad. I feel exhausted.
Jolene on August 20, 2018 at 9:38 am

Hi Melissa,

You bring up a very good point–the stress of sleep deprivation. I wish I knew how to solve the problem. Have any of our readers made headway in that area? If so, could you leave a comment? I’d like to compile them into a blog post. Thanks! Jolene
Melissa Orsack on August 19, 2018 at 5:20 am

This is such an important topic. I wish society as a whole was more aware of the mental health implications of parenting a special needs child. A recent event in my small town has made it even more clear. A mother of a special needs teenage boy took her own life. Even though it is a small town I have never met this woman and don’t know the details of her story but I cried when I heard about what had happened to her. I realized I was crying because,as the mother of a a 20 year old with ASD, I understand the toll on your mental health and how a person in that situation could be pushed to that point. There are so many good topics presented here regarding the mental health of families raising special needs children. One topic I believe contributes to the mental health deterioration of many parents is lack of sleep wether it’s because they are in a constant state of worry and can’t rest or because their child is one of the many who have irratic sleep patterns. I believe society as a whole is largely unaware of the long term mental health effects of parenting special needs children.
Jolene on May 18, 2018 at 10:10 am

You have been a good advocate for your daughter, but you shouldn’t have to do it yourself. Here’s a link (http://www.yellowpagesforkids.com) to a page with a resource locator that includes all the states in the United States. Click on your state for a list of organizations that provide advocacy help for parents like you. Many of them supply someone to go with you to IEP meetings. Best wishes as you advocate for your child! Jolene
Jasper on May 16, 2018 at 2:00 pm

Thank you for hosting here- you are very nice Jolene.

My daughter has hyperacusis and SPD / very sensitive hearing with a vestibular component. I’m running against a large public school system and can’t seem to get what she needs- we’ve done everything so she is emotionally ok- but gets bullied at times- school does the best they can but the setting is wrong-

I’m drained from having to look up my daughters rights and frame these IEP meetings like a lawyer- that is not a free appropriate education that doesn’t give you a lawyer to face the legal beurocrat system of education. Anyways… now it’s affecting my marriage because I resent my husband doesn’t know how to fight like I do- he says the wrong things at meetings with the school and doesn’t even laugh about it!! But ultimatly I need emotional support and if I’m leading this thing I need more say in how we do things- he is a good man in some ways but I don’t feel emotionally safe anymore. Sometimes I’m wondering how I will ever make it through the day when I wake up in the morning. I had so much going for me and now I feel like I’m nothing.
Jolene on May 7, 2018 at 3:31 pm

Korrie, you are in a really difficult situation. I don’t know what state you are in, and resources vary from state to state. But this link at Wrights Law website is a place to start: http://www.yellowpagesforkids.com. Click on the state where you live for a list of resources and organizations for kids with special needs and disabilities. I suggest you start calling the organizations in your state. Explain your situation and see what they can do. I wish I could do more. Jolene
Korrie on May 6, 2018 at 3:29 pm

I often feel like I need to ask my doctor for help I work full time while my husband stays home with our non verbal son on the severe end of the spectrum. My husband also has schizophrenia so when I come home there is no winding down I have to go straight into giving my husband a break because anxiety makes him worse. I barely sleep at night and often feel like crying but then I think if I go to my doctor he will just tell me to get respite which i am looking Into but usually when I go out without my son I worry about him escaping on the worker or whoever is watching him the hole time he is not with me .
Jolene on February 26, 2018 at 2:34 pm

Hi Beth, it certainly sounds like you could be dealing with secondary trauma related to what you’ve experienced with your son. How wonderful that the cause of his outbursts has been determined, but how awful that he and your family had to go through what you did. What a time you have had. All you can do is take one step at a time. I would also encourage you to seek mental health counseling for yourself before your son is released from the residential program. That may help you with your pattern of “flipping out” when his behavior is difficult. Please let me know how you are doing. Jolene
Jolene on February 26, 2018 at 2:30 pm

Hi Heather, what you have experienced sounds like a classic example of secondary trauma that is common to parents raising kids with special needs and disabilities. Regarding your memoir question, I will reply via private email. Thanks so much for leaving your comment at Different Dream! Jolene
Heather MacLaren Johnson on February 23, 2018 at 12:21 pm

I’m so grateful to have found this post! My husband and I adopted three kids from Russia when they were 6, 4 and 19 months. They are now 26, 24, and 20. We did not know they all suffered from FASD. I left my career as a clinical psychologist to deal with all their multiple, permanent, invisible special needs—cognitive, behavioral, emotional, physical. We deal daily with many diagnoses—PDD, ADHD, NVLD, Bipolar Disorder, extreme executive functioning deficits, multiple learning disabilities, cognitive disability, speech/language disabilities. I believe I might be suffering PTSD from the prolonged, cumulative stress of not only caring for three kids with so many significant needs, but, even more, the invisible nature of all their needs. They all look normal and are attractive. People, including our extended families don’t understand and even blame us for not coping better. Our marriage has been stressed so much and we keep fighting for it even not w that we are 59 and 64. I’m so burnt out and have been being treated for chronic depression and anxiety for 20 years. I’m worried about my health as I have a long family history of heart attacks/strokes. I am currently in good physical health but the high stress continues even as our kids are now adults. Our oldest is in a group home and our two boys still need a lot of support. I’m doing my best to take good care of myself but feel I’ve mostly failed at keeping my stress in a manageable range. My faith as a Christian grounds me and, if not for that, I may have actually attempted suicide in my darkest depths of depression. Sadly, most Christians I know have been the least supportive people in our lives, over-spiritualizing and judging our stress/depression/anxiety as lack of faith or, even worse, as unconfessed/unprepentant sin. Of course, I don’t buy those interpretations but they do cause a sense of isolation. In addition, our Christian extended families have been very unsupportive, judgmental, and rejecting. God has provided some great friends to fill the gaps so we are grateful but it doesn’t erase the pain of judgement and rejection from other Christians and family. I’m finishing a memoir about my experiences these last 20 years (with great well-known/published Christian author friends who think this book might be helpful in providing hope/encouragement to other parents like us as well as helping to shed the stigma about mental illness among Christians. From your experience, do you think a memoir on this subject (from the perspective of a Christian who has a doctorate in clinical psych and is a parent of three kids —now adults—with multiple, invisible, permanent special needs—who also struggles with clinical depression/anxiety) might be of interest—might be marketable? Just wondering your gut reaction. Thanks.
Beth on February 22, 2018 at 5:39 pm

Thank you so much for posting this article. I thought I was crazy until my son’s dr mentioned PTSD about me. He is 12 years old and diagnosed last year with ASD & ADHD. Although he is currently at a therapeutic boarding school until this summer and doing better I am afraid for when he returns. I love him and want him home but don’t at the same time. Before he went away and we knew his diagnosis he was punching holes in the walls and threatening me and his sisters. Then we learned he had been on the wrong medicine for years and possibly making him violent. After a year of changing medicine my sweet boy is back (Conduct Disorder was removed from his medical record) and wanting to please but I have the hardest time trusting him and when he slips up I flip out. That makes me so sad. your article is the only time I felt like I wasn’t the only person like this. I just hope and pray with time and patience I can overcome the pain and fear in my heart and raise my other 4 the best I can. Thank you.
Jolene on August 2, 2017 at 10:43 am

Hi Kristi, my you are dealing with a lot. I’m glad the post gave you some insight into yourself. I hope your therapist is teaching you some ways to cope–to take a mental break now and then in the midst of your caregiving. I understand the stress you are under and hope you can find more support in your difficult situation. Jolene
Kristi on July 31, 2017 at 1:21 pm

I found this post when researching PTSD in parents. My daughter and I are in therapy and the therapist has suggested that I have it, due to the years of cumulative stress, related to kids with special needs and now a husband who is in his 5th year of young onset dementia with Lewy body. He stopped working 3 years ago which requires me to work full time. My kids are higher functioning. A lot of their trauma also related to being adopted. My tipping point was my 16 yo daughter developing an eating disorder and making a serious suicide attempt almost a year ago. After months in residential treatment she is back home trying to stay healthy and being a normal teen which includes some bad choices. Now unless I am with her physically or can track her by GPS I fall apart. Therapist says I’m falling into hyper vigilance. Ive had numerous other symptoms which to me were to be expected considering everything I deal with. But the hyper vigilance is getting to be too much. And the awareness of long term affects of PTSD is concerning. At this point I would consider a residential placement for my husband but of course I can’t afford it.
Thanks for posting and the comments. Helps give me some insight into myself.
Jolene on June 12, 2017 at 6:08 pm

There’s always much to be grateful for in the midst of stressful situations. You are blessed to be able to recognize that! Jolene
Amanda on June 11, 2017 at 6:14 pm

So much to relate to!

If i wasn’t too exhausted in every way i would write a much longer more insightful comment!

I’m grateful though that i never experienced the grief for the loss of the child I thought i had.

I have always accepted Finn just as he is at every stage & don’t believe there is another child trapped within him.

But meltdowns especially now he is 6ft+ remain a terribly stressful thing to deal with.
Jolene on April 8, 2017 at 4:26 pm

Hi Debbie, I’m so sorry to hear of the situation you’re in. No wonder you feel detached and isolated. You’re doing so much on your own. Are you able to access some professional help? Someone to talk to about what you’re dealing, someone who could teach you new ways to channel your thinking when stress hits. Jolene
Debbie on April 8, 2017 at 2:54 pm

Hi all,
I am the guardian of twin 13 yr old girls who were finally diagnosed with Aspergers. One girl had aggression issues starting as young as 9. Since their mom had drug issues, most people assumed she had some sort of attachment disorder. They finally out her in a self contained classroom in the 5th grade because she had an over reactive “fight or flight” response. Her anxiety was horrible. She would try to flee whatever was driving her anxiety and when the teachers tried to stop her, she would kick, pull hair, hit etc. One day her teacher called me and told me she had been arrested off of her special needs bus for pulling the bus drivers hair. It was clear by the video that she was having an extrem anxiety attack and wanted off of the bus. It was a horrible experience with the juvenile court system. She was arrested the following year out of her self contained classroom for the same thing. Finally they moved her to a school that knows how to deal with these behaviors. We were also able to finally see a psychiatrist who put her on tenex to calm her fight or flight. Now she’s in the 7th grade and an A/B student. All it took was the right school atmosphere and people trained in behavior. Her twin doesn’t have the aggression but she has a lot of physical problems. She’s had 3 open heart surgeries, JRA, restrictive airway disease, hearing loss, mild scoliosis. Lately I can’t seem to remember simple things. The other day I looked at a picture of a bird and couldn’t remember what it was. I kept wanting to call it a penguin but I knew that wasn’t it. I finally asked my daughter and she said “it’s a peacock”. I’m constantly fighting Medicaid to get their meds or filling out paperwork for doctors or service providers. I used to enjoy church, but when the one girl flipped out at church one Sunday, I got a lot of well meaning, but totally not appreciated feedback on what I should do about her. Needless to say, I don’t feel as welcome there as I used to. And both my girls have no interest in going anymore. I get so tired of hearing that I’m not praying enough, or praying right. My husband is also disabled, so he hasn’t been much help of late. I was offered respite care, but I don’t even feel like going anywhere. I feel detached and isolated. Sorry for the rant.
Jolene on April 1, 2017 at 6:14 pm

Dear Angelica, you are dealing with so much and it must feel so isolating. I wish there was something I could do. Have you reached out to friends and family? It sounds like you have very little support. Jolene
Angelica on April 1, 2017 at 5:32 am

I have 4 kids, ages 5,6,7,&8. My oldest is high functioning. My husband works, a lot. I stay home, childcare would cost more then I would make. I gave up my dream to stay home… My oldest is very very reliant on me, I wish she wasn’t. It is so hard, her younger siblings see their older sister do stuff and either think it’s okay, or they try to stop her so she doesn’t get hurt, add to the mess I can’t keep up with, chase after her in the store so she doesn’t get lost… she then attacks them sometimes. I feel so bad for my other 3. They have had to be the older sibling when they aren’t, they have had to grow up faster in some ways. I know they are stressed. They miss out on things because my oldest has a melt down/ignores/does ? (You name it). She causes herself and her siblings to be late to school almost daily. I have been told by the principal and other staff that my parenting is to blame. They keep trying to refer me to parenting classes instead of admitting my daughter has school refusal. They referred me to the district attorney, we have no money to get a lawyer. It just adds to the stress, I am trying harder then I ever thought I could, but feel like no one sees it. I feel alone, I hide and cry when things get to be to much. I have no time for me, I can’t seem to tackle the laundry and keep the house straightened up. I get one mess cleaned up and my daughter, and her siblings have made atleast 2 more. There isn’t a wall in the house she hasn’t drawn on. I love her, I love all my kids, but some days I just want to hide in bed.
Jolene on March 16, 2017 at 2:29 pm

I’m so sorry to hear about your situation. If only I had some words of consolation for you. But I don’t. However, I will be praying for you and your family.
Mare on March 16, 2017 at 11:18 am

I cam across this in another attempt to find financial help for a post secondary transition type program for my 21 year old son. It was wonderful to read all the posts. My son is diagnosed with PDD, ADHD< High Functioning Autism, High Functioning Brain Injury, hearing impairments. All were late in being diagnosed and every one except for the PDD, I had to fight for. He graduated with high school diploma but only because the Sp Ed Director couldn't wait to get him or me out of her hair and even though he didn't pass the Ca high school exit exam, they graduated him. So many years of fighting systems – medical and school etc. only to land us yet another gray area. What now? He's "high functioning" but maybe because of the brain injury aspect, cognitively he is not able to get through a class – even one in a program that markets themselves "Actors for Autism". The Transitional Programs like one in Arizona called LDI costs 70k per year! The most difficult right now is continuing to see how years of rages and researching health and nurtrition, bankruptcy, advocating for him has taken its toll on his 3 brothers – most especially his older brother. Fining the right family counselor and modality is near impossible. ABA is only thing regional center pays for and it is quite ineffective repeating rules out loud. Married for 25 years and just recently I seriously wanted to take my son (who I honestly dislike but must love) and leave the family. It's just there's no where to go and no money. We are in debt at over 100k.
Jolene on March 8, 2017 at 2:01 pm

I am so sorry to hear you lost your son. Parents shouldn’t have to bury their children. Please know there are many who value your son’s life and are praying for you. I hope you have or will soon seek out counseling to help you process the grief associated with his life and death, so you are able to delight in the joy his short life gave you. Jolene
Barb on March 8, 2017 at 12:15 pm

This topic makes me cry. After 32 years of incredible stress with a self-injurious autistic child who was abused in school ( yes, beaten by a principal and locked in a dark closet by a teacher), who literally destroyed the house and received no education beyond sixth grade , after two disastrous institutional experiences, extended social isolation and a nearly destroyed marriage — after all this, we buried our child after he died suddenly of natural causes. We were confronted by well-meaning friends (whose life experiences were galaxies away) who cried with happiness for us. It was as though our son were not worth grieving for, as if his life were of no value. Yes, I could have written the book on PTSD. Still we loved our son. I believe that for some of us the love we feel is commensurate with the sacrifice required, and PTSD was and is part of that price. I still grieve, but my grieving is for things I couldn’t fix, things I couldn’t change, friends I couldn’t give my son, times I lost my temper, pain I couldn’t heal. I grieve for my son and for others like him. My sleep is saturated with nightmares of distress, the ever present danger that he would climb out a two story window, break a window and cut himself before I could wrestle him away from the broken glass, ad infinitum.
When I dream of him I dream of the anxiety of imminent danger, of trying to protect him, of knowing chaos was just around the corner, and I wake relieved and crying because his suffering — not mine — is at an end.
Jolene on November 22, 2016 at 10:03 am

Hi Cheryl, thanks for your comment and question. Kuddos to you for the work you’re doing. Life is infinitely better when we realize that the hard parts of life can result in character growth in us. To answer your question, yes, I am a stronger person because of our experiences with our son. I am who I am and do what I do because of them. Please keep me posted on how your research is going and what you learn. Jolene
Cheryl on November 21, 2016 at 9:23 pm

Hi, I am a graduate student and my dissertation is actually on Postraumatic growth (PTG)of mothers taking care of children with special health care needs. The idea is that there are benefits derived from experiencing the PTSD associated with being the primary caregiver. I intend to examine how social support and coping style may influence the level of PTG experienced. I wished I came across this page earlier. I think this a wonderful post. It is great to acknowledge that there is trauma and stress related to taking care of a child with special health care needs. I think PTSD is a real issue for parents dealing with the challenges of health care, schooling, behavioural issues in addition to the universal challenges all parents face.The posttraumatic growth inventory measures PTG on the following subscales: relating to others, new possibilities, personal strength, spiritual change and appreciation for life. Jolene can you identify with PTG on any level as a result of your son’s condition?
Jolene on November 16, 2016 at 4:47 pm

Hi Emily! You and your son have been through a great deal. I remember those years of sleep deprivation all too well. I’m glad the post gave you a new perspective on your mental health condition. If you have any questions, ask away! Jolene
Emily on November 16, 2016 at 2:03 am

My son is 4 years old and is in the process of getting a specific diagnosis of muscular dystrophy. I can’t relate to the violence or aggressive behavior (I’m very blessed my child has a good temperament) but I could write a novel on sub-par health care professionals!

A pediatrician from a local hospital asked Child Protective Services to investigate our home when my son started losing weight…with no prior knowledge of his case and no effort to examine my son’s actual problem. Needless to say, we transferred to another hospital and finally got a different formula for his g-tube. Now he’s growing like a weed 🙂

I woke up at 2:30 AM for a neurology appointment today and drove five hours only to hear that we still need more testing. I don’t remember the last time I slept for more than four hours. I’m barely holding it together, and your post made me consider PTSD as a possibility. I never would have thought of that, so thank you!
Jolene on November 3, 2016 at 8:59 am

Lisa, I am so sorry to hear of the stress you’re under and the heartbreaking decision you face with your oldest boy. I also invite you to join a support group I facilitate on Facebook for parents like us. First, go to Key Ministry (http://www.keyministry.org/find-a-community-online/) and register as they sponsor the group. Then go to Facebook and ask to join this PTSD/Trauma group. https://www.facebook.com/groups/1611201765795195/requests/

Jolene
Lisa Smith on November 1, 2016 at 8:52 pm

OMG this article could be written about me. About us. Our family. We don’t have one child with special needs but 3. Two are very aggressive and I have been hit, bitten, kicked and punched and pushed.
I also have been accused of child abuse when one of my sons told his educational assistants that i hurt him. Of course I didn’t. But there was an investigation and it’s still on going. This has just added to the “trauma” i have been through with my boys.
I wish more support was available for parents. I do get respite for my boys on a regular basis and over night respite for my oldest boy about 4 times a year. It helps, it helps alot. But what happens when they return? It’s all over again. WE’ve tried everything with our big guy and i cannot fathom putting him in a home but i know it will become inevidable . Sadly we just cannot continue to live like this, with aggression, holes in the walls, broken t.v s and other things.
Jolene on September 21, 2016 at 9:38 am

Sabrina, thanks for leaving you comment. You are dealing with so much right now. You’re right, it can be all-consuming, and when that happens parents neglect themselves first. I’m glad that finding this post made you feel less alone. You might also want to check out the A Different Dream for My Child Facebook page. It offers resources and support for parents every day. It also talks about PTSD in kids and parents of kids with special needs. Once you connect with some of the other parents there, you will never feel alone. And you might get some ideas that will help you move forward. Praying for you! Jolene
Sabrina on September 20, 2016 at 11:05 pm

I’m a stay-at-home Mom not by choice of three kids with special needs. I think if I had a choice to stay home or work I’d still choose to stay home because I find myself still micro- managing and navigating the schools and outside private help way too often and again not by choice. Keeping everyone on the same page and managing not only my household but advocating constantly and directing everything to make sure it’s implemented is like being the CEO of a huge corporation which in a sense is. I think I read above by another person that “most of those parents are so consumed by caregiving tasks, they don’t have time to seek the services that could help them have time away. Many look into services but can’t afford them, don’t qualify, the service providers aren’t reliable, or no services are available.’ It is so true! I spend the majority of my time when the kids are asleep or in therapy/school to trying to find some kind of outside help or attending to emails back in forth with my kids iep team members which on some days can be up to at times 20 a day if not more! I’m a person who use to take pride in myself and the way I look or how my home feels and looks now I’m lucky I can get a brush through my hair or go to the bathroom alone is basically a peaceful moment of my day. It is just my husband and I and he works long hours and works 65miles away so that leaves me to be the sole caregiver. I definitely have PTSD not diagnosed yet, soon come! Family have helped out financially in various ways but to help with caregiving or babysitting, they refuse! Like someone else said…you always have other’s who think you aren’t doing enough but just surviving most days is all I can do on most days. The stress is through the roof and love my kids dearly and learning to help them become independent is enough in itself of a great challenge to achieve on a daily basis especially with all the behaviors my one child has. God Bless You All! I know I’m not alone in this but it sure feels like it!
Jolene on June 28, 2016 at 12:06 pm

I am sorry you had such a bad experience with health care workers who traumatized you. So many health care workers are compassionate and support parents of kids with violent behavior. I hope you are able to find a therapist who can help you process your trauma.
G on June 28, 2016 at 1:02 am

Much of Ptsd comes from badly trained and judgemental health care workers. I found four in 17 years of taking care of my son who cared and helped my family. They are not trained to know the difference between parental abuse and or personal/ home problems and autism. Frankly, as the Mom of a violent spectrum child, I am the one who was abused. I love my child but feel like I have lived through a car wreck where everyone just looks on wondering which party caused the wreck… every day of my life.
Jolene on May 20, 2016 at 9:20 am

Jennifer, what you said made perfect sense, and I thank you for sharing a bit of your story. How wonderful to hear that your son is making progress and that you see him for the amazing person he is. People who haven’t experienced special needs parenting don’t understand and can sometimes seem unfeeling. Thank you for the grace you have shown dealing with them. Jolene
Jennifer on May 20, 2016 at 7:39 am

My son is a high functioning autistic child. He is doing very well now at school and is learning to be independent. He is now 11. But those early years with him were very hard. I had people tell me off for his behaviour. I has people stare at us when he was having a bad day ( and usually so was I) we were lucky we got him diagnosed early and he got loads of help. I had it easier than a lot of parents do. I now work with kids in a school setting and sometimes start to cry and stress sets in when dealing with kids like my son. I had one of those moments today. It was a miner thing that set me off too. It can be very hard to explain yourself to those who do not have a special needs child. I know the loneliness that can come from trying to do everything for your child and having people think that you are not doing enough. My honest hope is that people would be more understanding more compassionate to those dealing with just trying to make it day to day. We will lose it sometimes and we are only human. We are not bad parents we are just doing our best. We worry almost non stop.
I have to say I am so proud of my son and how far he has come. He is a lovely boy and has a brilliant sense of humour and loves so whole heartedly. He is kind , compassionate, intelligent and amazing. I can only hope that I can stay strong for him and his sister who are the world to me. I am not sure if I have made any sense at all. Just know that if you are like me you are not alone and there is help available.
Jolene on May 4, 2015 at 6:35 pm

What a beautiful testament to the importance of perseverance and choosing to honor your vows. You have made some very wise decisions. Thank you for speaking so honestly about how hard special needs can be on a family and a marriage.
Karl Graff on May 4, 2015 at 6:05 pm

We have 2 boys on the spectrum, and our oldest daughter was diagnosed with Minimal Brain Dysfunction- this has surfaced in physical ways- unable to really ride a bike, driving is almost impossible.

It is hard to always be so “aware” of your children, and balancing advocating for them and letting them go mainstream. Our oldest boy is now 22- works full time but is realistically two years from being able to move out on his own. My youngest son is 7 and is having a better time of it in school, but all of the social “problems” are still there- being taken advantage of by others, not getting team sports, emotional fatigue, etc.

We have not had but one vacation in the past 22 years and you’re right about balancing everything. My wife has been unable to work for a lot of our marriage due to some real care issues for our oldest son. He had a violent streak, lots of anger- mostly justified- and had she not been there for him at the end of what were for him really hard school days I don’t know what would have happened.

We love our kids- but I hate Autism. I can’t watch shows like Parenthood because they just make me want to cry.

So we have struggled financially throughout our marriage and still do. I am amazed that we are still married, that we don’t have some addiction issue, and that our kids have turned out so well. We consider ourselves fortunate that our kids did not have worse “disabilities” but I think that it is harde for parents of kids with “invisible” disabilities to really get the societal support that they need.

It has taken innumerable re decisions by my wife and me to stay married, love our kids, not go on a spending binge because “we deserve it, ” or something else that would have negatively affected our life together.

My oldest two have made decisions not to have kids at this point because of the hereditary nature of autism. I could write volumes more, but I’ll stop here with this- if you do not have a special needs child of your own you really do not know what that parent with one (or more) is going through.
Jolene on May 4, 2015 at 10:27 am

Katie,

You bring up a valid point. But, in my experience, most of those parents are so consumed by caregiving tasks, they don’t have time to seek the services that could help them have time away. Many look into services but can’t afford them, don’t qualify, the service providers aren’t reliable, or no services are available. Pride is an issue for some, also. They think they can do it themselves or don’t want to ask for help. But most of them are so busy trying to cope, they sometimes do baby their kids because they’re too exhausted to push their kids to develop more independence.

I’m just curious. Do you have a child with special needs? What is your caregiving experience?

Jolene
Katie on May 3, 2015 at 10:22 pm

A parent of a kid on the spectrum should OF COURSE seek treatment for PTSD (or any other health condition) if it is warranted.

However, there rather a lot of parents who bring it upon themselves — chauffeuring the now-adult autistic kid everywhere, quitting their job out of a misguided belief that only they can help their kid and then complaining the adult autistic child is totally dependent on them. (This applies to high functioning autistic kids only — kids who may have developed independent living skills had mommy elected not to baby them into helplessness).
Jolene on May 3, 2015 at 6:43 pm

Sheryle,

You are dealing with a great deal. I’m pleased your daughter has finally received a diagnosis and that your church has been supportive. Best wishes as you continue to search for services.

Jolene
Sheryle Brown on May 3, 2015 at 1:34 pm

My daughter is 30 yo with severe autism that went un or misdiagnosed until 1 1-2 yr ago. This has been very trying especially living in a rural area. We have used activities within our church and lots of detox baths. I will makr contact w DDD in hopes of finding services.
Sheryle
Jolene on May 3, 2015 at 12:56 pm

You are so right, Lori. The stresses are great, and from what you have said your battle with stress is ongoing, unending and overwhelming. Thank you for adding the financial stress to the conversation. What are some practical ways people could help relieve some of the stress?

Jolene
Lori on May 3, 2015 at 11:00 am

The above is all so true- may I also add the financial stress too. My son has a nonverbal learning disability (a little like aspergers), and all the above is so true. Also, not mentioned the financial worry- because I work in the public school system, and because I knew,very early that whatever was going on with my son, he was so ‘high functioning’ he would likely not receive a lot in the way of services- services such as OT, tutoring that my husband and I had to pay for. Not only that is loss of income- it is exhausting at times working with my son, and my ability to work has diminished, as well as looking for a caregiver- I could not find after school programs I trusted, hiring someone privately was so expensive, I would barely take anything home- the stresses are huge….
Patti Derr on March 13, 2015 at 12:51 am

my daughter asked
What about siblings? We had a rough go
In the child raising years
Patti Derr on March 13, 2015 at 12:51 am

my daughter asked
What about siblings? We had a rough go
In the child raising years
Sonia on March 12, 2015 at 10:28 pm

It’s very stressful. My marriage didn’t survive. I saw a therapist until I couldn’t afford it anymore, as I no longer have health insurance. I’m in that group who has too much income to qualify for help with health insurance, but not enough to pay for it privately. Therapy is very helpful, as it wears on my friends and family to be my sounding board. An unbiased therapist is really something every special needs parent should have access to.
Sonia on March 12, 2015 at 10:28 pm

It’s very stressful. My marriage didn’t survive. I saw a therapist until I couldn’t afford it anymore, as I no longer have health insurance. I’m in that group who has too much income to qualify for help with health insurance, but not enough to pay for it privately. Therapy is very helpful, as it wears on my friends and family to be my sounding board. An unbiased therapist is really something every special needs parent should have access to.
Jolene on February 24, 2015 at 11:54 am

Hi Theresa,

Thanks for your comment. First, my sympathies for your daughter. How hard it must have been to say good-bye to her after all you’d gone through together. I’m so glad to hear you are recovering from your trauma. So far as not being able to finish the book yet, it could still be too soon. Eight years isn’t that long ago, and writing about our children’s medical issues can be very difficult. 32 years after our son’s birth, telling his story can still make me cry.

That said, my guess is treatment may be a better option for you than reading a book. I will contact you via email to continue the discussion.

Jolene
Jolene on February 24, 2015 at 11:54 am

Hi Theresa,

Thanks for your comment. First, my sympathies for your daughter. How hard it must have been to say good-bye to her after all you’d gone through together. I’m so glad to hear you are recovering from your trauma. So far as not being able to finish the book yet, it could still be too soon. Eight years isn’t that long ago, and writing about our children’s medical issues can be very difficult. 32 years after our son’s birth, telling his story can still make me cry.

That said, my guess is treatment may be a better option for you than reading a book. I will contact you via email to continue the discussion.

Jolene
Jolene on February 24, 2015 at 11:50 am

You’re welcome, Kelley. You are describing many symptoms of PTSD, and I encourage you to find a licensed trauma therapist who believes what you are saying and is trained to help you process those memories.
Jolene on February 24, 2015 at 11:50 am

You’re welcome, Kelley. You are describing many symptoms of PTSD, and I encourage you to find a licensed trauma therapist who believes what you are saying and is trained to help you process those memories.
Theresa Bruton on February 24, 2015 at 11:47 am

We have a daughter who was born with major heart problems. We spent months at a time in the hospital far from home, while also carrying on life with the other 4 children. After her second heart transplant at age five, she moved on to heaven. Her body was just done. It has been 8 years since, and I determined a year ago that I was suffering from PTSD. Knowing what was going on helped me immensely. I am doing so much better this year, but I do still experience a full body reaction when either certain memories are triggered or on the dates of major events (surgeries, birthday, heaven day…) I would love to learn more about this. I have written most of a book about our time with her…but I can’t finish it because it’s just too hard to go back to that time…in the way that you have to do to to finish a book. It’s just really intense and my life is too busy right now to be emotionally messed up.
I would love to hear from you…do you know of things I can read that may help?
Thanks!
Theresa Bruton on February 24, 2015 at 11:47 am

We have a daughter who was born with major heart problems. We spent months at a time in the hospital far from home, while also carrying on life with the other 4 children. After her second heart transplant at age five, she moved on to heaven. Her body was just done. It has been 8 years since, and I determined a year ago that I was suffering from PTSD. Knowing what was going on helped me immensely. I am doing so much better this year, but I do still experience a full body reaction when either certain memories are triggered or on the dates of major events (surgeries, birthday, heaven day…) I would love to learn more about this. I have written most of a book about our time with her…but I can’t finish it because it’s just too hard to go back to that time…in the way that you have to do to to finish a book. It’s just really intense and my life is too busy right now to be emotionally messed up.
I would love to hear from you…do you know of things I can read that may help?
Thanks!
Kelley on February 24, 2015 at 11:47 am

That is so interesting, I told my doctor I thought I might have PTSD and I am pretty sure he thought I was nuts. I think the stress of multiple surgeries, multiple diagnoses, and all of the therapies and appointments has taken a while to set in. I am incapable of relaxing and am not sleeping. Thank you for posting this.
Kelley on February 24, 2015 at 11:47 am

That is so interesting, I told my doctor I thought I might have PTSD and I am pretty sure he thought I was nuts. I think the stress of multiple surgeries, multiple diagnoses, and all of the therapies and appointments has taken a while to set in. I am incapable of relaxing and am not sleeping. Thank you for posting this.

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