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PTSD in Special Needs Parents: How I Deal

Alethea Mshar
Special needs mom and Blogger
04/27/17  10:37 AM PST
special needs parents

 

PTSD in Special Needs Parents: How I Deal

It was just a routine appointment. When they called us back we went to a tiny alcove for blood pressure, weight and height assessment, and for no apparent reason, I got woozy, my heart started racing, and I had to take a few deep breaths to avoid vomiting. I’m sure I sound dramatic, but my body was reacting to its past.

My son, Ben, has been hospitalized so many times I have lost count. He has an extensive list of medical concerns, including leukemia (he’s now cured), and Hirschsprung’s Disease. I have been the one to hold him down through hundreds (perhaps thousands) of needle pokes, and been there to see him roll away for every single surgery.

I’m a strong, stoic mom, but no matter how well I manage in the moment, the impact of all of those incidents has accumulated in my psyche, and I now have many symptoms of PTSD, and the dramatic reaction I had at that routine office visit, is one of them: a flashback.

When we think of PTSD we think of war veterans or emergency personnel. In fact, I doubt that moms are even on the list of consideration for a PTSD diagnosis. I doubt I would have even recognized it in myself if it hadn’t been for a blog series that I stumbled upon.

When I first recognized the issue, I wasn’t sure what to do. I’m an avid runner, and was more than happy to treat myself with the runner’s high and call it good. At a certain point I realized that even though exercise is beneficial in so many ways, it wasn’t enough to manage the gaping wound in my life that was caused by so many years of intensive parenting. I knew that if I wanted to continue giving my family the best I have to give that I had to fully address the stress factor.

I sought out counseling, and with the help of a friend, I found a therapist who could help me unravel the mess of emotions I have around all that Ben has endured, and all that I and the rest of our family has endured with him. It might be the first time I gave myself permission to express all of my fears and let the emotions flow with sobs and wails. In addition to the much needed catharsis, I also learned better coping skills, because a person can only run so many miles, and eventually I had to face all my demons. Learning how to face them and deal with them was a critical step in managing my PTSD.

I still get triggered, and usually it’s out of the blue, when I least expect it, but now I have the tools to manage it and a safe, reliable therapist to hold my hand as I work through it. PTSD in parents of kids with autism and medical trauma is very real, but so is the treatment and recovery.

 

More Help for Special Needs Parents:

Child Care for Children with Complex Needs: No Rest for the Weary

Kindness for Special Needs Parents

The Spoon Theory for Special Needs Parents

Comments

15 Comments

  1. Theresa
    Posted April 27, 2017 at 11:14 am PDT

    Wonderful information and I think it helps us all realize that all parent personality types can have ptsd. Thank you!

  2. Posted April 27, 2017 at 11:17 am PDT

    Thank you for your comment, Theresa!

  3. Etana
    Posted April 27, 2017 at 4:16 pm PDT

    Yes very seldom spoken of or acknowledged.
    Many parents of special needs children also live with frequent physical violence. The effect is the sams as any other domestic violence situation.

  4. Beth Bailey
    Posted April 27, 2017 at 4:40 pm PDT

    I have often wondered what my problem is. If I hear a loud, abrupt noise I instantly go into panic mode … until I realize my 2 children on the spectrum are not with me. That seems to always trigger huge meltdowns, and now I move into mommy meltdown mode even when they aren’t with me.

  5. Eleanor
    Posted April 27, 2017 at 5:04 pm PDT

    I thought i was the only one who has experienced ptsd. I too have a special needs adult son.

  6. Sherri
    Posted April 27, 2017 at 6:45 pm PDT

    Keep in mind that EMDR therapy works wonders to cure PTSD in both parents and children with autism.

  7. Candice
    Posted April 27, 2017 at 7:29 pm PDT

    I don’t even know how to start. I am a full time special needs teacher, a mother of a gifted 7 years that neglected because I don’t spend enough time with him, a 3 year old with Downs that wants mami for himself and a caregiver for my mother which has dementia and Alzheimer’s. I need a therapist asap! I don’t have time to breath! I feel like I cannot breath!!!! Thanks for posting

  8. Katheryn
    Posted April 27, 2017 at 9:37 pm PDT

    Thank you for this wonderful information. A Facebook group I am in that is for families who have had children have hemisphectomies were just talking about this. Will have to share this with them.

  9. Rachel Collister
    Posted April 28, 2017 at 2:09 am PDT

    We are struggling to find a specialist to help my son with PTSD, he has special needs (cerebral palsy) and comunication difficulties.
    Can you help? Respond in London are not responding to emails!
    Thank you

  10. Posted April 28, 2017 at 8:51 am PDT

    Sorry you are having trouble, Rachel. You might reach out to a local (UK) online community, such as http://community.fireflyfriends.com/ or ask for a referral from your son’s doctor or a social worker. There may also be government resources, such as https://www.gov.uk/children-with-special-educational-needs/overview. Hope that helps!

  11. Terry
    Posted April 28, 2017 at 3:47 pm PDT

    I believe I have PTSD. Special needs kids (2), husband past, several serious accidents and yes, panic attacks along with anxiety. Need help.
    Ocala, Fl area

  12. rosa marron
    Posted April 28, 2017 at 6:47 pm PDT

    i too think i have PTSD. My daughter is 20 years old. She started getting seizures at age 14. I have started taken medication cause it was getting bad.

  13. Christina
    Posted May 1, 2017 at 5:54 pm PDT

    Very very real…

  14. Kate
    Posted May 1, 2017 at 9:35 pm PDT

    Thank you so much for your article. When my doctor first suggested I had PTSD I laughed at her. I truly thought there was no way my intense anxiety, panic attacks, and severe depression were related to my son’s rare diseases (Syringomyelia, immunodeficiency, ehlers-danlos syndrome amongst other dx). I knew I was scared all the time. I couldn’t drive anymore because I was certain we would get in a terrible accident. I was physically I’ll before any appointment and when dealing with medical staff. Once I learned about PTSD and that it wasn’t just ear veterans and survivors of abuse, it all started to make sense. I too had that familiar feeling of my heart beating so fast and needing to vomit at the clinic with my son today. It does get better and has gotten better but there are days like today that remind me of the hardest parts. I hope your son and you continue to improve. Thank you for sharing.

  15. Eve
    Posted May 4, 2017 at 3:23 pm PDT

    As the mother of a 33 year old with autism and a 28 year old who was medically fragile as a child, I fully agree that PTSD is a reality. The stress of living in “crisis” mode is overwhelming. I find when I’m not dealing with a crisis is the worst time for me. I guess when I have a few minutes to actually realize all I’ve dealt with, it takes its toll on me. Last year I finally gave in to medication for me. I always thought meds would make me less alert or “with it” to handle the problems of dealing with life’s problems. Actually it has been just the opposite. I can focus better now that the edge has been taken off my emotions.

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