Resentment « Terrible Palsy

Resentment

September 27, 2007 at 10:12 am | In Botox & Band-aids, cerebral palsy | 10 Comments
Tags: cerebral palsy, therapy

With the other kids, everything else has been so easy. I can be the laid-back parent I really want to be. I don’t have to wonder and agonise over every mouth of food they eat, every breath, a sneeze, a cough, a complaint of a sore head.

When he did he do his last lot of number 2s? How much he has grown/put on weight since his last check up? Is his scissoring getting worse?

The AFOs. The equipment. The wheelchair. The leaving the house and making sure I have everything that I could possibly need.

Whether he participates properly in external activities. Is his speech clear enough for others to understand? Has he had enough food? Enough water? Is this activity beneficial to him? Is this a good position for him to be in?

And the list goes on and on . . .

I started this post some time ago. It was initially titled “Whose child is he?”. And although I ask myself all these questions, sometimes he doesn’t feel like my son. Too many other people have a say as to what happens to him. Too many people if I am not vigilant enough to stop it.

I’m not a controlling parent. I’ve often said that I wish he could make these decisions instead of me. And believe me, as soon as he is “old” enough – he will be.

And over the period of time, I have come to resent the level of input that others have in his and ultimately, my life. Being told how many exercises/stretches I should be doing with him. How to hold him. What I can and can’t do with him. When to cut him up into pieces. What medicine to take. What therapies to do. Whether or not he should go to daycare. What he should and shouldn’t eat. Even advice given on discipline issues with him.

I do resent having other people (in particular, so many people) involved in my son’s care. Tell me – is there anything wrong with that?

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The complex feelings I have around this issue boil down to something like this: I’m a believer in community–I LOVE that there are a lot of people in my kids’ lives, in the neighborhood, in the extended family, in their various fun activities. Don’t resent their relationships with their friends’ moms, the Brownie troop leader, the lifeguard at the pool, that’s all good. What I don’t love is that there’s this other group of people, the ones you describe, that aren’t in my son’s life for the joy of it at all–they’re getting paid to keep track of him, measure him, chart his progress or lack thereof. And that’s not the same, and yeah, I do resent their role when it gets intrusive.

But I remind them, often, that I’m not Jake’s therapist’s assistant–I’m his mom, which is a higher ranking position. I’ll welcome her insights and consider her suggestions carefully, but the therapist doesn’t get a vote in how we spend our afternoons and weekends.

Comment by Penny — September 27, 2007 #

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hmmmm…. NOPE!

Great post. Penny is so right – Mom out ranks all those others who are merely giving you opinions no matter how strongly they try to stake out their corner of the truth. As Moo’s Mom you know best and that is just that.

Comment by kathryn — September 27, 2007 #

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Here! Here! I agree with all of you. Sometimes I find myself getting so caught up in being the “therapist/nutritionist/physician” that I lose sight of what’s most important, being MOM!

Comment by Heesun — September 27, 2007 #

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Don’t know if it is “wrong”, but I have that feeling all the time! I had a huge blow-out with a speech therapist one time and hissed at her “I haven’t been able to be able to parent my child alone since the day she was born. Let ME do the parenting here, YOU be the therapist”. I guess that comes with have a preemie & a SNK. I too resent having to have all of these people in our life at times and then of course, I am also thankful they are there. So, I am right there with ya!

Comment by Tiffiany — September 27, 2007 #

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Nothing wrong with it whatsoever!

When my guys were young, Hubby and I attended a seminar about how to parent a child who has ADHD. This was years ago—before the explosion of diagnoses that hit the U.S.

As I sat listening to the instructors—who were therapists and student therapists—tell us how we should be parenting, I simply got furious. I finally raised my hand and asked if any of the instructors were parents themselves. They weren’t–not one of them.

They were instructing us to put into practice some unrealistic theories that they had never experienced themselves! doh!

After that, my resent-o-meter grew pretty sensitive.

Comment by Attila the Mom — September 28, 2007 #

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When my child was in PT, the therapist would always grill the nanny when I wasn’t there. She was sure that I didn’t have any book in the house and that was the reason for my child’s speech delay, etc.

I started to get very pissed every time things got back to me.

Looking back, I think that what she was picking up on was my grief. Frankly, it did cloud my love at times but I was too busy and too overwhelmed to see it. So no, I was not as bad as she thought (we had TONS of books I read every day!), but she was on to something spiritually….

Comment by ellen — September 28, 2007 #

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There is nothing wrong with it.

I try to stay focused on Hannah’s wants and needs. I try I don’t always succeed but, I do try to keep a filter in my mind on all the information coming at me.

It alarms me how much everyone tries to use fear as a motivator. When someone uses the phrase it needs to happen or it will never happen, I isolate the idea in my mind and try to divorce myself from emotion. (It’s never easy) Nine times out of ten they are wrong the person is using the typical child model. I threw that measuring stick out the year she was born. I see things as she has her own timeline, the typical child model is only useful for what skill to happen next not when it is going to happen.

I focus on one to two goals at time. I work on everything when I can. But, if I’m having I day where I can’t deal with everything I deal with those one to two things.

Argh now I’m giving unasked for advice. I’m really just explaining how I cope.

Anyways, yes I totally relate to what your feeling.

Comment by Janette — September 28, 2007 #

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I too understand the resentment you feel for having so many involved in his care. Good for you in recognizing the importance of letting your kids make their decisions as much as possible. Your a great mom and I know your example will help Moo make these choices on his own someday.

Comment by Mel — September 30, 2007 #

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Thank you for this! I was starting to feel this way especially because our micropreemie is adopted, and a special needs adoption means a longer “trial” period, so monthly reports fed-exed in on time and faxes to the agency whenever we see any doctor which, given the myriad of specialists is a lot, or even if she falls and bumps her head(no, I’m not kidding. and the kid is trying to walk right now). I love my daughter with everything I have, everything that’s in me. But I was worried I was becoming rather disassociated at times– more like “specialized caregiver,” less like “Mama.” I worried it was because of the adoption… yet thinking about it, I felt like the case manager reporting to the doctors and the agency, and that would probably have been the case had I given birth to her.

Anyway— I hear you. And on the extra solicitious thing? I hear you there, too. I had one mom gently chastise me on the playground the other day for “hovering.” OK, well, she’s 10.5 months old climbing steps over asphalt and she’s already had one brain bleed in her life, not to mention if anything happens I will be investigated– sort of hard to be free and breezy, lady.

Comment by Sadie — October 1, 2007 #

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When I hit my teens, one of my physios suggested that we make a commitment that therapy would be done religiously, regularly and properly for x days or weeks and then for the next x days or weeks we wouldn’t worry about it but have time off. She said she found people got better results that way and I have to say that I did too. Plus the time just to be like every other kid was great.

Comment by Emma — October 2, 2007 #

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