Wednesday, January 12, 2011

How do you cope?

We’ve been experiencing really dramatic highs (Ethan’s new school) and equally dramatic lows (Ethan’s head-banging, hitting, and refusal to wear his cochlear implants) lately. I’m so glad we’ve got the positive stuff happening to help create some semblance of balance, otherwise I might have gone mad by now. I feel like I've been on this ride with my son and I just want to get off. I know he'll be a passenger for many more years, but I'd like to just stand a few hundred feet away and watch him, rather than experience the spiraling emotional ride in the seat next to him. 

Speaking of my mental health, I recently started seeing a therapist. It’s something that I’ve always wanted to do, but for some reason I've seen it as somewhat of a luxury, something that only rich people do. I’ve had a really tough time emotionally this past year and finally decided that one of the best parenting moves I could make was to start helping myself with some of that same gusto that I help my son. So far, it has been great. She asked me an interesting question on our first meeting: Do you think you approach your situation with a special needs child from an emotional or an intellectual point of view, or a combination of both? I’m not really sure why she asked, perhaps just to get some clarity on how I cope, but it certainly was interesting to think about.

When we got Ethan’s initial diagnosis of hearing loss, followed by his diagnosis of CMV, I instantly went into research mode. I joined several Internet groups and started voraciously reading blogs. Then we found out about his GI issues, apraxia, and eventually autism. I continued to bury my head in books and the online communities for help and support. So I guess I’d say that I’ve taken the intellectual approach, and that one of the reasons I’ve been feeling so down lately is because that approach finally became tiring and now I’m absorbing a lot more of this on an emotional level. As you probably know all too well, it’s a lot easier to tear through books and information than it is to face a broken heart. I’m glad to have found a good therapist, one that specializes in working with families like ours, to guide me through this stage of realization and grief. And I’m tremendously grateful for those of you who blog about your lives, and for Hopeful Parents, because knowing that I’m not alone on this exhilarating yet terrifying roller coaster ride makes all the difference. 


  1. What a great topic. My husband and I were discussing this just the other day. Some days I need to scream and cry and other days there are enough positives to balance. We have tried to live a normal life as possible and accept our son's challenges (Hypotonic CP) as just that-challenges. We find positive people to be around and it helps to have family and friends be with us so they can get an understanding of our son's needs.
    My husband and I try to spend some alone time too and have a date night at least once a week. Having open communication has also helped us because when one of us gets down in the dumps the other one usually tries to pick up the pieces.

  2. I am really interested in hearing about how other people cope and love the idea of date night. We've got one scheduled for tomorrow evening actually. Our trouble is that my husband travels during most weeks of the year and we see him on weekends, give or take a few extra days here and there. It makes it difficult to really share in our collective emotional needs, but we try the best we can.

  3. Thank you! Thank you! Thank you! I can so relate. My 8-year-old son has periventricular leukomalacia (PVL), which in essence has rendered him mentally handicapped.I have often thought the same exact thoughts. Some days there are enough positives that happen that overshadow and outweigh the negatives. Other days I feel like I'm going to lose my mind with the roller coaster of emotions I experience from one moment to the next.
    Do you have extended family that helps out at all? I was at an all-time low and expressing this to my mother. She abruptly asked, "What do you want me to do about it?" I said wearily, "I need my mom to fix it!" To that, she responded, "I'm not going to adopt him!"
    That absolutely crushed me!!! I am an adult; however, it was a desperate cry for help and support. Instead, I was met with such an attitude that left me feeling helpless and despairing!
    I know I'm not the only one who experiences these emotions, but I sure wish I had more contact with people who do.
    Thanks for being transparent and real!

  4. Oh, Julia H., I'm so sorry that you didn't even get some support (or at least a chuckle on your comment!) from your Mom at your low point. We all need support. We all need more help than we ask for. I sure hope that you find someone to connect with to help make the lows more bearable.
    Heather - So glad you found a good therapist! I've found that my heart breaks, heals, breaks again, heals again, breaks some more. It's a tough road we lead and it sure does help to get a time out to get some input from someone who is completely non-judgemental and is not emotionally invested in your life. I sometimes don't want to talk to those around me that love me because I know they hurt, too. Talking to an impartial 3rd party person really is quite freeing.

  5. I am in tears reading your post. First of all, thanks for sharing this personal side of your struggle. I feel so isolated sometimes -- silent suffering. DH i think is on the intellectual side of things. He has eternal optimism for our son's Autism. I'm a realist and like you I dove into all the literature first and blogs searching for support and ways to cope. It's been two years since our dx and although I thought I was over the grief, it seems like I've only scratched the surface. In the midst of small positives, i am inundated with the aggressive behaviors we see now and the negative effects. I know when one behavior leaves another comes or intensifies. I just can't future think -- only day to day. He's only 4.
    My family lives out of town and until recently, they were in denial. Now they "get it" but they are 200 miles away. I grow tired of hearing "he can talk, he just doesn't want to" or "there is nothing wrong with him..." Although I know everyone means well, i grow tired of all their opinions on how to raise my son. Would love less opine and more support. I'm usually the one who comforts and counsels everyone else. I am ill-equipped it seems to help myself. I've thought about therapy. maybe.
    Again, thank you for speaking word that are in my heart and the opportunity to vent. :)

  6. Oh how I know that feeling. We've been searching for a dx for my son for years only to have the best diagnostician in our state tell us that he had never seen a speech issue like my son's. I'm guessing you all now what that means: More testing! Ugh.
    Therapy is a very helpful tool. Venting to people who understand is also powerful.