Monday, January 3, 2011

Circle of Friends

Is there such a thing as stress free parenting?  

Recently I was speaking to a fellow Special Needs parent, we were discussing the stress that often accompanies parenting a special needs kid. And yes, I agree there is a tremendous amount of information, appointments, therapies, teachers, specialists and so on. And let's be honest, who wouldn't like a special assistant to help keep it all straight. Am I right?

This particular parent was feeling really overwhelmed by feeling that they couldn't "connect" with their child. I suggested that maybe doing some reading about a particular condition via blogs or maybe Dr. Google could help; as there is so much helpful information online, resource sites, support messages boards, etc.

Then, the crux of the matter.

"I expected a baby without any disability. I shouldn't NEED to Google it."

So my immediate thought was 'Whoa, you have issues!'

This was obvious frustration and then, while I took a deep breath, the tables turned.

Why was I not "unhappy" about this too?

(Apparently I was not exhibiting quite enough stress, or anger, or disillusionment -- take your pick.)

As much as I tried to understand where they were coming from I couldn't. 

Yes, it's true I expected a typical baby too. And I definitely got more than I bargained for in the delivery room, but the truth is I cannot explain what is it that makes someone more (or less) accepting of the situation.

Were they passing out awards as we were discharged from the hospital that I was unaware of?

She'll handle it well, She'll be an advocate, She'll walk away, She'll champion the cause, She'll cry every day for years.

Why I am not lamenting my bad fortune at having a child with more medical needs than other 3 year olds, heck... more than some 90 year olds?

Does it make me a "better" parent because I am not bitter about it? 

Am I really in denial? 

If my son had been born typical, would I spend any less time on Google or in support forums, as I had suggested?

That's an easy answer. No.

I know this because I spent countless hours online in a support forum when I was expecting. I gathered daily with other moms-to-be. We all had the same desire, a healthy baby. And when things didn't quite turn out for us, I mustered as much grace as I could and I made an exit. Not because they made me feel bad or less of a parent...but because I had a new set of concerns. I set out to find those answers.

If things had gone differently I would probably still be there. I'd just be looking for different kinds of answers to different kinds of questions. Maybe I'd be comparing car seats instead of craniofacial surgeons. But hey, guess what? SN kids need car seats too.

So in many ways I guess I am doing some of the same things typical moms are doing, just with a twist.

Long ago I resolved to widen my circle of support and face the world to be the best parent I can. I'd like to think I'd still do the same, special needs or not. 

So to answer the question, would my life be any less stressful if I had a typical child? Probably.

But stress free? Not a chance.

 

Janis Marie is a full-time mom, freelance writer and blogger. Highly regarded and respected for her ‘tell it like it is’ approach; she created and maintains Sneak Peek at Me to chronicle her son’s life and complex medical journey. 

Through her blog and affiliations, Janis works year-round to promote awareness and acceptance for those living with a rare disease diagnosis. 

3 comments:

  1. I think a parent can express feelings of being overwhelmed and grieving for a life that she had hoped for for her child and/or herself without "lamenting the bad fortune" of having a child with special needs. As all parents of special needs kids know, it can present us with overwhelming, sad, difficult, and frustrating situations. Many of us appreciate our children's amazing gifts, love our children more than we can ever express, cope with difficult special needs, even while we deal honestly with feelings of sadness, exhaustion, depression, worry for our children's future, and yes, grief that our children must have such difficult roads. So a comment about wishing she didn't have to research her child's issues doesn't, to me, indicate someone with issues -- it's a sign of a mother saddened with her child's lot and the very real clash between reality, the expectations so many of us had about parenting, and the perfectly normal wish that we and our children did not have to deal with such difficult issues. Accepting the good AND bad is, I think, healthy and natural. And I do not think it is a bad thing for a mom to admit that she wishes her child, and her life as a parent, were not filled with research and special needs support groups and therapists and the like.
    As I read this post, I'm struck by the negative tone with which you describe that other mom. Perhaps you didn't mean to convey that impression. But I'd hope that here, of all places, each of us would be careful to show empathy and emotional generosity to parents who are struggling. If there's anything having a child with special needs teaches us (and it surely teaches us a lot), it's to not be judgmental or critical of things we don't understand. Your situation may not be painful for you. But it doesn't mean that that other mother "has issues" because she's openly acknowledging that she wishes her child didn't have the challenges she does, or that her life as a parent didn't involve coping with those issues. That issue of connection (which you put in quotation marks as if it's a small thing) is huge and difficult and extremely painful for parents of kids who have attachment disorders.
    I guess the point of your piece is to reflect on your attitude about your parenting life, and I'm glad that you don't struggle emotionally as much as some others might. But the tone of this feels a bit like you are judging another mother because you don't understand her suffering, and that is disappointing to find on a blog designed to provide support for parents of kids with special needs.

    ReplyDelete
  2. I agree with Diane. Not all of us see parenting a child with special needs as our life calling. Yes, parenting is stressful regardless of whether your child has special needs or not. But, as the parent of four children - both typical and with special needs, I can assure you that parenting a child with special needs is a whole different kind of stressful. I will never be happy about being the parent of a child with special needs and that certainly doesn't mean I have "issues".

    ReplyDelete
  3. Ladies,
    You bring up a good point. Perhaps repeating the entire conversation would have portrayed things more accurately, although I chose to careful word things because it was a hostile tone that things took rather quickly and unexpectedly. My apologies if anyone was offended.
    For the record, it wasn't another mother that I was having this discussion with. It was a father, an absent father who, by his own admission, is quite a bit in denial about the struggles of his ex-wife and child. He chose to leave his family because he couldn't take not having a "perfect" child. He resents that some SN parent are not bitter or angry. I have my moments of struggling with this, but generally no I am not bitter and angry at other parents who feel or handle things differently. I just try to do my best with the situation I am in.
    I offered him some online resources to visit, and he did agree that maybe working through some of his issues about perfection or expectations may help. Perhaps he will chose to be in her life again or at least not be so angry that her mother is not choosing to deal with the situation the same way.
    All I was trying to convey,perhaps badly, is that I had a hard time explaining to him WHY I was not constantly angry or why I chose to seek support in others, like here. I would never tell another parent they aren't allowed to feel pain, but I don't believe it should be directed at other parents.
    I hope that helps clarify the context of our discussion.

    ReplyDelete