PTSD and Special Needs Parents: Calling it Like It Is

by Sheri DaconJun 12, 2015In Children, PTSD43 comments

Guest blogger Sheri Dacon is today’s contributor to Different Dream’s series about PTSD and special needs parenting. She tells the story of seeking the cure for what ails her and how to help other parents who live with the combination of PTSD and special needs parenting.

PTSD and Special Needs Parents: Calling it Like It Is

Psychotherapy. Anti-anxiety meds. Massage therapy.

Meditation. Guided Imagery. Scripture memorization.

Vitamins and supplements. Chiropractic adjustment. Acupuncture.

Essential Oils. Hypnotherapy. Books & websites.

Journaling. Ignoring. Napping.

Hydrating. Boot camp. Yoga.

Seeing a laryngologist. Seeing a psychiatrist. Seeing a neurologist.

Deep breathing. Bible study. Gardening.

Reading. Denial. Lots and lots of prayer.

These are the avenues I’ve been down in my search for a cure from what ails me.

I’m like the woman in the Bible who bled for 12 years. I’ve spent all I have and seen every doctor/specialist/guru I can afford. I’m spent and exhausted and overwhelmed.

Most days I carry on and try to be brave in this world that has left my voice — and a huge chunk of my identity — behind. But on days when I’m tired and my blood sugar is completely off kilter and my hormones won’t behave, well I don’t function quite as well.

On those days I retreat to my closet for a little Jesus and cat therapy, because I can’t keep my eyes from welling with tears. Big, fat tears of regret and disappointment — but mostly fear.

Fear is a big issue, the one that haunts me, the one that lies just below the outer crust of my fragile but mostly happy life. I don’t feel depressed. I am mostly in a good place. But the surface is so thin. I live in a constant state of hypervigilance. The tiniest quake could shatter the whole thing into oblivion.

Special Needs Parenting and PTSD

I’ve been doing some research on PTSD and parents of special needs kids and how autism moms experience stress similar to that of combat soldiers.

Every time I consider whether or not I might suffer from PTSD, I feel guilty.

I’ve never been in real danger. I haven’t experienced the trauma and the stress of military action, or even that of a military wife. My husband works in IT. The biggest danger there is outsourcing.

I don’t live in a war-torn country, or even in a high-crime neighborhood.

I have a cushy life.

So when I say I think I might suffer from PTSD, I feel more than a little guilty, yes.

But it’s like no one’s bothered to inform my body.

My nervous system is a wreck. My muscles are tight. My hormones are so out of sync that I often don’t know which end is up. In certain situations, and in specific physical locations, I find it almost impossible to breathe. My voice doesn’t work the way it’s supposed to anymore.

Adrenaline and cortisol and whatever other stress hormones are in overdrive and my body screams “Danger!” way more than it should.

I wonder if I will ever be able to convince my subconscious that there is not really any danger.

PTSD: Calling It Like It Is

Some family friends are experiencing sudden trauma within their family. My husband and I talked about it the other night and we agreed that there was no easy way around what is happening to them. There will be casualties. There will be irreparable damage. It is indeed trauma. It’s easy to call it that in their situation.

But right in the middle of the conversation, for the first time ever, I admitted something out loud.

“That’s what happened to me, you know. At our last church. It was trauma.”

I’ve always been strong-willed and determined. Mind set on not letting others know that I might not be okay. Trying like crazy to keep a stiff upper lip and never let anybody see me cry. Acting like it’s no big deal, this thing that happened. Pretending to be strong when I am oh, so very weak.

So to admit it to you — here in writing on the big wide internet — is difficult to say the least.

I have been traumatized.

No, it wasn’t military combat. But it felt like it.

It was trauma. It involved my special needs son. It crushed me to the core. It made me question everything about myself.

But I’m slowly learning to let go of the guilt and to call it what it is.

It is PTSD. Post traumatic stress disorder.

It’s taken up residence in my very bones and it is okay for me to be weak and to admit the truth: it was trauma. I was beaten down and it may take a while to get back up. And it is okay.

Of all the strategies I’ve tried, this one seems to work best. A simple recognition of trauma — of PTSD– for what it is.

Letting go of the guilt.
Accepting what is.
Praying for the future.
Trusting in the one who heals in time.

Are you experiencing similar stress as the parent of a special needs child? Stress that forces you to live in constant fear or a perpetual state of alert? Perhaps what you are dealing with is PTSD.

Perhaps it is time to call it like it is. And then move on to getting help.

You won’t be alone. I’ll be in the boat right alongside you. There is safety and strength in numbers.

PTSD parents of special needs children, let’s support each other, shall we?

By Sheri Dacon

You can learn more about Sheri by visiting her website at sheridacon.com.

43 Comments

Jolene on July 2, 2018 at 9:39 am

Janine, what you are experiencing is real, and there are good therapies that can make a big difference in your quality of life. I’m not trying to sell stuff, but my book Does My Child Have PTSD? (https://www.amazon.com/dp/1942934017?tag=diffedream-20). Another good book that describes and provides research behind many therapies is The Body Keeps the Score by Bessel van der Kolk. I’m praying for you!
Janine on June 28, 2018 at 11:53 am

This is real, I wondered for a long time what was wrong with me. I’ve not been diagnosed and like everyone else, you feel silly even thinking it, but it’s there nonetheless.
Jolene on November 14, 2017 at 1:12 pm

It’s reassuring, isn’t it, when we can finally put a name to what we’ve been dealing with for years. It sounds like you are on the road to recovery, and I hope the healing continues for years to come! Jolene
Jill on November 14, 2017 at 11:54 am

My son with autism is 37. He has lived in supported living for 17 years, but I am involved in his life as his guardian, mom, and daily phone companion. He left our home earlier than I thought he would, because of his aggression and I do not have him home or go out with him without staff or his dad or brother being present because of safety. I’ve been in counseling and have taken medication since he was eight , after years of no sleep and trying to find out what was “wrong” and how to help our son. All the while, trying to have a “normal” family life and pull myself up by my bootstraps.
I deal with “fight or flight” daily, over some pretty mundane circumstances. It was just recently that a friend mentioned it sounded like PTSD. What a revelation. That idea, and doing some research on it has helped me deal with guilt (why can’t I just get over it) and given me better insight into many issues I’ve been perplexed about. I appreciate what I’ve read in this site. Understanding and learning about the “fallout” of raising and continuing care of a child/adult with autism doesn’t get me stuck in self pity, it gives me strength and resilience to meet each day, a bit kinder to myself and better able to meet my needs so I can be there for my family, which includes my husband of 40 years, our youngest son, who labels himself as a “self confessed science nerd” and has blessed us with many joys, including his wife and 2 children, and our intriguing and charming son who both continues to give our family challenges and fills our life with love.
Jolene on April 24, 2017 at 11:28 am

Dear Kim, you are in a very hard situation. Your PTSD is real and has good reason to have developed. As hard as it is for you to consider residential placement for your daughter, you need to move ahead with it. You will be much better able to parent her and look out for her welfare when you are rested, mentally-healthy, and in a more stable situation. The decision you’re considering is for the good of your entire family.

Jolene
Kim on April 23, 2017 at 11:42 am

I’m a 31 year old widowed (5 months out) foster mom of two.

My 8 year old has FAS, along with an alphabet soup of other diagnoses.

I definitely have a degree of PTSD.

My daughter is combative and violent, and sadly, it is quickly becoming necessary to consider a residential treatment facility.

I feel like I cannot do anything in her waking hours except maintain hypervigilance and trying to diffuse situations before they escalate.

I’m exhausted. My home is a disaster because she thrashes and trashes when she gets agitated, which is nearly constantly, and by the time she’s in bed, I’m too tired to do much else but fall into bed myself for the 4 or 5 hours of sleep I get before the battle starts again.

I’m always watching my back, always running scared, always trying to stay a step ahead, anticipate, diffuse, and maintain her safety… If that’s not akin to bring a combat solider, I don’t know what is. So, the fact that our stress levels have been noted as being similar doesn’t surprise me.

I shed secret tears, pray in earnest, read all the books, join all the support groups, try all the therapies, to no avail.

My heart goes out to everyone in these types of situations. I know how isolated you feel – because, let’s face it, no one wants to touch your war with a 10 foot pole, let alone volunteer to walk the front lines.

I’m trying hard to be strong, but I’m not. I’m very, very weak… I try to lean into God’s strength, but even that doesn’t feel like enough many days.
Jolene on April 6, 2017 at 4:53 pm

Loydaine, you are okay and you are doing the best you can for your kids. Remember that always! Jolene
Loydaine Strock on April 5, 2017 at 11:09 am

My problem is a little different, too many foster kids three adoptions and 5 birth children. Our last foster daughter has FAS, RAD & an IQ of 50. She has now moved on but we just discovered our 9 year old adopted daughter has RAD. So I am tired and feel like a failure!! I know the Jesus very well which is why I am standing at all! We ranch for a living and have no insurance so some things are not an option for me. Mostly I just need someone to say that I am ok! Six of our kids are grown and everyone thinks if I just did things right Belle would be just fine. Thank you for just listening. Loydaine
Jolene on January 23, 2017 at 5:50 am

I’m so sorry to hear about your struggles, Becky. I know how you feel and pray you will read the rest of the articles in this series to learn about where to find help.
BB on January 19, 2017 at 7:02 am

Thank you for this. This is me now. I use to do be able to work, due networking, run events for charities and take care of the kids. I was a rock star at selling and connecting people.

Now I just am focused on getting the kids stuff done and finding a way to pay bills. I get panic attacks for no reason at all and I feel alone
Jolene on October 17, 2016 at 10:07 am

Kathryn, my apology for the slow response to your comment. We’ve had a number of family issues that have kept me from the computer. Yes, docs and nurses should provide information about PTSD in children. The problem is that many of them are unaware it exists. I conduct trainings for teachers, nurses, and other medical personnel and they are woefully uniformed. That’s why I wrote Does My Child Have PTSD?. Here’s the Amazon link if you’re interested: https://www.amazon.com/gp/product/1942934017/ref=as_li_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=1942934017&linkCode=as2&tag=diffedream-20&linkId=A4Q2ABB6QWJFBNMN

You are also right about acknowledging your own PTSD. I am presently facilitating a Facebook group for parents like Sherri, you and me. You can join the group by going to this link. https://www.facebook.com/groups/1611201765795195/. Praying for you! Jolene
Kathryn on October 13, 2016 at 3:22 pm

The doctors of children with special needs (pediatrician, neurologist…etc.), should provide a handout to the parent(s) letting them know about the role of parenting a SN child and the possibility of PTSD and what to do about it.

Sheri’s article above was a ‘wake-up call’ for me. 14 years later and 3 major brain surgeries before the age of 2, my daughter’s life was saved, yet since 3 months of age she has done everything with the left side of her brain, following her hemispherectomy in 2002. Family disappeared and as a single mom, fighting the good fight for an appropriate education and therapies for my daughter, I am worn to the bone. In addition, for 10 years I faked that everything was “OK” in front of my older children, which stuffed my emotions down further, so I’m sure I haven’t fully processed them. How do I know this? I still get choked up recalling the emotional horror of the first few years, the knowledge that I WAS and still AM alone. My daughter still has seizures and I still get frightened.
Jolene on April 21, 2016 at 5:56 pm

Jessica, you are an amazing woman. Thank you for using your difficulties to serve others. I look forward to hearing how you impact lives in the future as you are already impacting your son’s. Jolene
Jessica on April 21, 2016 at 4:15 pm

I was diagnosed with having PTSD about 4 or 5 years ago. My therapist identified this trauma beginning as far as my childhood and with the birth of my son who has Multiple disabilities and a ex-spouse who has not been supportive in any way she exclaimed that it had been exacerbated. I have decided to use my trauma as education and went it to the field of Early Childhood education and I plan to help families with children who have exceptionalities. My son is 11 now and while it is very difficult most days I feel the same way. I am so thankful for my son, the burden of his needs indeed SAVED my life. I am for ever grateful to my beautiful son. I left an abusive relationship and learned a lot about myself and how to thrive in this world. (though as you say most days I am barely making ends meet)
Jolene on April 16, 2016 at 3:36 pm

Jennifer, you are so wise. Keep up the hard work. It will make a big difference in your life and the lives of others. Jolene
Jennifer on April 16, 2016 at 5:56 am

I see one once a week who specializes in borderline personality disorder so she can teach me what I need to know about this disorder and help me with the stress. I meditate 2 hours a day, run 3 miles 3 to 6 times a week, etc (self-care plan). I also do a lot of spiritual work and it does help but this is an impossible situation and some days I struggle. It’s been a hard road but I’m getting there.
Jolene on April 13, 2016 at 2:25 pm

Oh Jennifer, please seek out someone to help you relieve some of the stress. Have you considered visiting a therapist, counselor or pastor? That would be a good next step for you. Jolene
Jennifer on April 12, 2016 at 8:00 pm

This article really resonates, especially the part about feeling tightly controlled all the time, strong and not letting others see you cry. I’m a mom of a child with autism and a child with borderline personality disorder. It is an extremely stressful situation. At times, I am immersed in fear, hands shaking, feeling like I’m going to shatter and would do anything to find peace. Then there are days where I’m like a bull pushing through obstacles. I’m 9 years into this special needs parenting and I’m just now at the point of completing crumbling.
Jolene on February 16, 2016 at 9:33 am

Your kids have a very wise mamma. I’m so glad you recognized your own stress and are addressing it. Only when we can offer our kids a safe environment can they let down their guards and be the people they were created to be. Keep up the good work! Jolene
Mama pajama on February 15, 2016 at 12:42 pm

I have 2 kiddos with special needs (autism) and have tried almost everything, suppliments, diet, therapy, ect. We are still doing therapy but the biggest thing that has made the most difference is me getting help for myself. Ever since I made the decision that like it or not, I need to pay attention to my emotions and deal. I’m constantly watching things on YouTube about anxiety, anger, motivation, happiness, PSTD, meditation, ect. I’ve found so much helpful information and have brought my stress way down. Low and behold- my kiddos started talking in full sentences! It was like they felt safe enough to come out of their own little world!
Jolene on September 4, 2015 at 10:47 am

Dear Jenni,

The more I write about this issue, the more I’m convinced the vast majority of parents raising kids with special needs are living with unresolved trauma that needs to be addressed and managed. Best wishes as you seek your next step. Jolene
Jolene on September 4, 2015 at 10:46 am

Shard, I’m so glad it helped you. I hope you will be able to find the treatment you need to manage your PTSD and lead a good life. Jolene
Jenni on September 4, 2015 at 8:05 am

I feel like I am reading about myself. I do have PTSD I have had to go to the doctor and get my hormones checked and sure enough my cortisol levels are constantly in the toilet because of tired,worn out adrenal glands. I am grateful I am not the only one who feels constantly worried and scared for my children with autism. Thanks so much for sharing!
Shard on September 3, 2015 at 11:16 pm

Thanks. I think I was guided to stumble upon this article. The courage to admit to PTSD with my special needs kids is easier to find, knowing I am not alone.
Jolene on June 20, 2015 at 5:27 am

Yes, Sheri has a way of getting into the heart of every special needs mom. I hope you are seeking treatment, Peg, so that your life can be fuller and free. Jolene
Jolene on June 20, 2015 at 5:26 am

Your journey sounds like a hard one. I’m so glad to hear things are improving. Jolene
Melissa on June 19, 2015 at 7:30 pm

Thank you for sharing your story. What a weight off my shoulder to know I’m not alone. Both my daughter and myself have PTSD. My special needs son has made amazing progress, but when he was little and couldn’t control his anger and frustration he was physically violent. My daughter had to be prepared at all times to lock herself in her room in order to be safe from her little brother. We are ok now but its been a hard journey.
Peg on June 19, 2015 at 7:15 am

Oh my goodness! Sheri always says what I’m thinking/feeling. My 2nd husband of 8 years just talked about this last week. (He is a Vietnam veteran). But my first husband of 28 yrs was abusive and my 27 year old daughter with disabilities is verbally abusive (on Facebook too). I was/am a good wife and mother. I have so many of the symptoms and I too feel guilty. It is hard to explain to people.
Sylvia on June 16, 2015 at 3:42 pm

It’s funny you should mention it, but when talking to my daughter’s counselor, she told me that I had all the signs of PTSD! Just acknowledging that and applying some of the strategies she recommended have helped tremendously!!
Jolene on June 15, 2015 at 5:10 am

You are so welcome, Tina. You have been through a lot, and treatment can make a big difference. Please stop back or send a private message through the contact form on this blog to let us know how you are doing. Thanks!
Jolene on June 15, 2015 at 5:10 am

You are so welcome, Tina. You have been through a lot, and treatment can make a big difference. Please stop back or send a private message through the contact form on this blog to let us know how you are doing. Thanks!
Jolene on June 15, 2015 at 5:09 am

Sometimes, someone else’s words act like a mirror, don’t they? You’re invited to check out the rest of the series, Lindsy, as other posts provide ideas about treatment, too.
Jolene on June 15, 2015 at 5:09 am

Sometimes, someone else’s words act like a mirror, don’t they? You’re invited to check out the rest of the series, Lindsy, as other posts provide ideas about treatment, too.
Tina on June 14, 2015 at 9:58 pm

I am a fifty year old single mom of a nine year old child with classic autism. I have raised him with very little help since day one. He was two years and nine months old when he was diagnosed; i was in my third semester of college, working on an accounting degree. When he was diagnosed, all i wanted to do was cry, but i decided to stick it out and go for my associates degree, atbthe very least. By the time i was done, i was ready for a nervous breakdown. I believe, at that point, that i had PTSD. But, like many parents, i brushed it off. I went through a very difficult time as well with the public schools, as i was on the receiving end of their abuse, harrassment, and retaliation for advocating for my son. About a year ago, a mom of an adult autistic son told me that she believed that i was suffering from PTSD. I trust this woman implicitly, and was stunned, yet concerned with her assessment, but once again, i brushed it off. I believe that I came across your post for a reason….it’s God speaking to me. I am currently battling the schools through the state education appeals system, and have also a current civil rights compliant against the school veing investigated, and my son is home with me, missing school. In the last few years, my physical health has seriously deteriorated. I think it is time to find a good psychologist and a good primary care doctor. Thank you so, so much for addressing this! Your posts are the first i have read on the subject. I will be sharing, most definitely. God Bless.
Tina on June 14, 2015 at 9:58 pm

I am a fifty year old single mom of a nine year old child with classic autism. I have raised him with very little help since day one. He was two years and nine months old when he was diagnosed; i was in my third semester of college, working on an accounting degree. When he was diagnosed, all i wanted to do was cry, but i decided to stick it out and go for my associates degree, atbthe very least. By the time i was done, i was ready for a nervous breakdown. I believe, at that point, that i had PTSD. But, like many parents, i brushed it off. I went through a very difficult time as well with the public schools, as i was on the receiving end of their abuse, harrassment, and retaliation for advocating for my son. About a year ago, a mom of an adult autistic son told me that she believed that i was suffering from PTSD. I trust this woman implicitly, and was stunned, yet concerned with her assessment, but once again, i brushed it off. I believe that I came across your post for a reason….it’s God speaking to me. I am currently battling the schools through the state education appeals system, and have also a current civil rights compliant against the school veing investigated, and my son is home with me, missing school. In the last few years, my physical health has seriously deteriorated. I think it is time to find a good psychologist and a good primary care doctor. Thank you so, so much for addressing this! Your posts are the first i have read on the subject. I will be sharing, most definitely. God Bless.
Lindsy on June 14, 2015 at 6:09 pm

Yes! This fits me exactly!
Lindsy on June 14, 2015 at 6:09 pm

Yes! This fits me exactly!
Jolene on June 13, 2015 at 5:59 pm

Sandra, I’m so glad this post confirmed what your doctor said. I’ll be praying you find effective therapy soon and learn to manage the condition. Please use the contact page to email me privately if you would like more information. Jolene
Jolene on June 13, 2015 at 5:59 pm

Sandra, I’m so glad this post confirmed what your doctor said. I’ll be praying you find effective therapy soon and learn to manage the condition. Please use the contact page to email me privately if you would like more information. Jolene
Sandra on June 13, 2015 at 11:04 am

I was very recently diagnosed with PTSD. I really felt my MD had is wrong. Just yesterday I was saying to my Pastor “I don’t think I have what she says I have.” ‘Well, this article could have been written about me except for all the therapies tried because remember. I was in denile. BUT now, after reading this I am willing to admit it. I have PTSD. But thank you Lord that even in this there is hope for a mom of two autistic boys.
thanks for you openess on the big wide web.
Sandra on June 13, 2015 at 11:04 am

I was very recently diagnosed with PTSD. I really felt my MD had is wrong. Just yesterday I was saying to my Pastor “I don’t think I have what she says I have.” ‘Well, this article could have been written about me except for all the therapies tried because remember. I was in denile. BUT now, after reading this I am willing to admit it. I have PTSD. But thank you Lord that even in this there is hope for a mom of two autistic boys.
thanks for you openess on the big wide web.
sandra on June 13, 2015 at 10:20 am

WOW I could have written this and every word would be truth about me…guess I can’t deny it anymore. My MD was correct. I have PTSD….but thank you Lord that even in this there is hope.
sandra on June 13, 2015 at 10:20 am

WOW I could have written this and every word would be truth about me…guess I can’t deny it anymore. My MD was correct. I have PTSD….but thank you Lord that even in this there is hope.

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