Thursday, July 1, 2010

Walk the line: protective vs. paranoid parenting

Hi, wonderful peoples. Still on vacation, wish you were babysit. He, he. Today's guest post is from the supercool Sarah over at Baby Stroke Steps. She's mom to Avery, who's 4 and like Max had a stroke at birth, and baby Gavin. She's a lively writer who also takes gorgeous photographs. Welcome, Sarah!

There's a fine line between being a protective parent and being a paranoid parent. And as hard as I try to stay over on the sane side, more often than not, I'm riding the crazy train. It's not something I'm proud of. I mean, who actually likes being "that mom?" I hate sounding like the overbearing parent with a million questions and even more concerns, but for many of us with special needs kids, I think it simply comes with the territory.

Ellen's recent post about hopes and dreams for our children got me thinking and I was happy to realize that I have "real" dreams for my daughter. We always tell her she can be anything she wants -- a doctor, a scientist, a musician... anything. And I truly believe she will be whatever she wants someday. (Although, to be perfectly honest, the other day she told me she wants to be a mermaid. A purple mermaid. We hope she changes her plans a bit between now and high school graduation). Talk of the future seems so natural now, but thinking back, I wasn't always that "real" or hopeful.

When Avery was born, she seemed perfectly normal (as much as I hate that word, that's what she was to us--normal). She was our first, so we had nothing to compare her to. She cried a lot, but babies do that, right? She held her hands in tiny fits...but babies do that too, right? Then we realized it was just one tiny fist. And she barely slept. And it seemed like she never stopped crying. After firing our first pediatrician for not taking us seriously, we found one who did and who recommended we see a neurologist. After a freighteningly long evaluation, he told us she'd had a stroke.

That day snowballed into countless tests, appointments, and, of course, expectations. Scary, horrifying, depressing expectations. I remember calling friends and family with the news like we'd had a death in the family. And essentially, that's what it was -- the death of our hopes and dreams for her. It sounds dramatic, but the way those doctors talked, we'd be lucky if she regained any sort of speech (she's missing 3/8 of her brain, and the speech center is completely wiped out), who knows when she'd walk, she may have learning disabilities, she may never drive due to poor eyesight, and we could never let her play sports because of balance issues and the possibility of head injuries.

We're incredibly blessed that Avery's CP is mild. Her clinical diagnosis is right hemiparesis (her hand is more affected than her leg), she wears an SMO and will probably get OT and PT for the rest of her life. But she's so much more than that and she's proved so many doctors wrong. She now scores above average on speech evaluations, walked at 14 months, is incredibly bright and doesn't qualify for special ed, can spot a speck of dust a mile away (seriously, she really could find a needle in a haystack), and is a wicked good soccer player.

I may not know what caused her stroke or if there's anything we could've done to prevent it, but I do know that with the umbrella term "CP," doctors are stabbing in the dark. Every baby, kid and adult with CP is massively different, and they are hardly ever right with their predictions. So I've managed to block out all the dismal expectations and predictions, and when I talk about her future, I have no worries. (My husband and I joke that she'll be the one at Harvard, while our non-CP child is living in our basement at 30.)

But... I'm a mess when it comes to day-to-day stuff.

When we take a walk, I panic because I'm afraid she'll trip and crack her head open.

When she trips, I gasp so loud the entire neighborhood hears me.

And when she falls, I'm the one crying; not her.

If I could send her into the world in bubble wrap and a helmet, I would. With almost everything she does, I say, "Okay, but be careful." And I overanalyze, overplan and overthink everything.

Last week, my husband came home after picking her up from school and told me there was a field trip this week. At an indoor playground. And they were walking there -- one mile there, and one mile back. Normally, I'd flat out say no. But now that she's 4 years old and is creating real friendships and memories, we're really trying to make sure she's allowed to be a "real kid" by participating in this sort of thing.

I initially said, "I'll drive her there and back so she doesn't have to walk." But after he gave me "the look," I said, "Fine. I'll just ask if they need a parent helper." (I figured that way I could keep an eye on her, and be there -- with a first aid kit in hand -- if something happened.)

But after sleeping on it, I decided (against what feels like all my better judgement) to let her go solo. On her own with her friends. One mile there and one mile back. I'm trying to tell myself that even if she falls and hits her head or scrapes her hands, she'll be fine. It's not life or death. But in all honesty, I'm nervous. What if she falls and breaks her affected hand? Even worse, what if she falls and breaks her good hand? Or what if she hits her head and has a seizure -- or God forbid, another stroke?

I know it's a slim chance of that happening. But if you're like me, you don't put much stock in chances and percentages. The odds of prenatal stroke is about 1 in 4,000... and yet it happened to my baby.

In talking to Ellen about this though, she said she operates under the "if his NICU experience didn't kill him, nothing will" belief, which is awesome. I really wish I looked at things that way. But, for me, learning that Avery suffered a stroke in the safest place on earth -- the womb -- not only left me with a bit of guilt, but also an uncontrolable urge to protect her at all costs in the outside world. One specialist told us that she would have died had her stroke occured any earlier. It scared the hell out of me -- we'd almost lost her once. I'm certainly not going to let something like that happen again. I'm not God, but I can't imagine the guilt I'd have if I felt like I didn't do everything possible to keep her safe each day.

But, she's not a baby anymore. She's growing up, exploring and learning things on her own. And all odds aside, I know I've got to loosen the reigns a bit -- for her sake and mine. I can only protect her so much and for so long. And if I don't start now, how will I ever cope when she leaves for Harvard? :)

How do you personally deal with your child's special needs? Are you like me, pushing the line toward paranoia, or do you just roll with the punches (and bumps and scrapes)?


  1. I wish I knew what to do, or how to answer. Sometimes I think I get it right, telling Hannah she may have special needs but that doesn't mean she gets to have special tantrums. But I do a lot of internal freaking out. I take an anti-depressant and xanax for PT sessions because I don't think it is good for her to have me crying about my fears and thoughts and worries. I do think she is smart and will be capable of being who she wants to be, but my heart aches that anyone will ever think less of her if she limps or has any obvious impairment. The underyling metabolic disorder scares me at least as much as thje CP, and yet I put her in a full size day care with her sister and hope she eats enough every day to never go hypoglycemic again. I hope to stay out of the paranoia zone, but no promises.

  2. I have 2 boys with special needs. I have a 14.5yo with mild autism and a mood disorder. The mood disorder can cause him to assault people at a moments notice. I also have a 4.5 year old with some sensory issues. He has also over come a major speech delay and a broken femur.

    I think every parent has their little things that they freak over. It is VERY normal. Every single time my older son is out of my sight, I wait for the call that he has assaulted someone. With every inch he grows and every pound he gains, I wonder if the next rage is going to be the one that gets charges filed on him.

    My younger son is my baby. He has been home with me since he was born. I thought I was going to lose my mind when it was time for special needs preschool. This child had only been speaking in sentences for less than 6 months, and I was going to put him on a bus with a stranger?! I compromised...he rode the bus, but I pinned a card to his backpack that basically said " my name is CB. I go to XYZ preschool. I ride bus 123 TO school, and bus 321 home. if you need further information, please call my mother at 614-123-4567" you know what? that card was used ONCE. a sub bus driver didnt have an updated route sheet, so she used it to get his name and call the compound to get our address.

    I have to laugh at the what was said about surpassing the doctor's expectations. My baby, the one who has severe apraxia and didnt speak in sentences til 2.5 years old...he is was reading at 3.5 years old. My child that spent 5 weeks in a body cast recovering from a broken thigh...he was riding a scooter at almost 3. At 4.5 he is riding a 2-wheeler with no training wheels. Yesterday, with my encouragement, he walked into his summer program with a little girl using a walker. Her mom was having a heck of a time getting her to walk with all the kids running past. My little angel walked up (shyly, but he did it), asked if he could walk with her,then put one little hand on the bar of her walker, and "guided" her about 30 feet. My heart just melted a little when she got excited and "ran" a few feet with him right next to her. He told me last night that he plans to walk with her the next 2 days (last days of the program).

  3. Hey nice to meet ya! I loved your post because I AM that mom! I know it and admit it freely! I am the lead conductor on the crazy train! I hate it but if you look at statistics all the things that happened to Faith, if it could go wrong it will! One in 4,000. One in 100,000. One in 500,000! And she had all that, so what's to stop another one in a million? And isn't that our responsibility anyway? I admire Ellen for being able to say what she did...I wish I could be that way, too! But for now I gotta put on my train suit!

  4. I don't know, personally I swing across that line from side to side. My son is legally blind, and he's 19 months and still isn't walking on his own because he has no depth perception. I want him to walk on his own so badly, but I'm afraid of all the walking/running into things, the falls, the bumps, the bleeding, etc that I know will happen once he does start walking.

    On the other hand he's pretty good at riding his little toy car and I want to get him a tricycle for his second birthday which I know is like setting him up for disaster, but I just don't think I can deny my toddler a trike you know? He'll never be able to legally drive, so how can I take a tricycle away from him because of my paranoia? (He's also at risk for seizures) Don't get me wrong I'm sure I'll have him in helmet, knee pads, etc and I'll be running around after him yelling "There's a tree to your left, don't turn right there's a puddle. Keep going straight" etc. And I'm gonna have those moments of AHH!! but still I have to let him be a kid.

  5. I think your protectiveness is common and typical, Sarah. Seems to me like parenthood is a series of decision points. Many a day sometimes. Ellen offers a good benchmark - surviving the NICU.


  6. WOW! I am the paranoid mom for sure! My family thinks that I'm crazy but I constantly follow my 18 month old (who also had a stroke before birth) everywhere he goes to make sure he doesn't fall and get hurt! He swipes at me so I will back off and give him space so I hold the back of his shirt! When he does fall, I too am the mom that gasps so loudly that everyone within a mile radius looks. I definitely need to jump off the paranoia train and relax a bit but that's easier said than done!

  7. I am a paranoid parent, always waiting for the other shoe to drop. I actually let my daughter bicycle 2 blocks away today, and that's pretty much unheard of.

  8. My daughter is 21 months and she also has mild CP- right-sided hemiparesis from an IVH at birth. She loves to run around and I'm not TOO bothered by the tripping, but I do hover when she has to go up any steps because even though 9 times out of 10 she can do it, the 10th time she'll just pitch over backwards. All the parents at the playground who let their 12 month olds climb the play structures think I'm way overprotective, but I don't think it's weird not to want to see your kid's head bust open.
    I sometimes wonder about dreams she'll have for herself and how having CP will affect them. Will she want to be a ballerina like many girls do or will she sense that it's not for her? When I was little I was bookish and scorned sports and physical activity, so maybe dashed athletic dreams won't be too much of an issue.

  9. I am the UNDERPROTECTIVE mom of two SN kids. I let them play in the mud, wear idiotic outfits, eat crap on occasion (though I do try to do the balanced meal thing as much as I can), stay up late if they can sleep in the next day, run through the fields necessitating TICK CHECK..and in general just try to let them go with the flow. They have a routine but it is a relaxed one, because they spend time in both our house and their grandparents' due to the fact that I work a lot of nights Their grandparents are the lions in the family, though--they can be hypervigilant at times, but they've got good instincts, they're hypervigilant at the right times!

  10. My son Zane had an in-utero stroke also. He is 18 months old. We are going to be starting an intense therapy program with him in Birmingham Alabama and the # of hours we have to keep his right hand (unaffected) in a splint to help him use lefty is utterly exhausting. I have been praying a lot lately for God to help me and give me wisdom and I came across this verse. 1 Timothy 4:7-8 "Train yourself for godliness; for while bodily training is of some value, godliness is of value in every way, as it holds promise for the present life and also for the life to come." So, we still do our PT/OT and splinting etc. but each day I am more concerned about what I am teaching and providing Zane spiritually; to know who Jesus is and to live in a way that is pleasing to Him. That gives me the most peace and satisfaction as I watch Zane grow and learn. And it gives me the strength to make it through each day. I don't have our blog up and running on him just yet (, but it will be soon.

  11. I definitely border on neurotic (OK really I am way past the border and living in crazy town most of the time). I am working on it. She will start school in the fall and I am slowly preparing myself for that. It is just hard to think of sending your nonverbal, nonmobile 3 yr old into the big bad world all by herself! (see what I mean about crazy town?)

  12. I'm fine with falls. If Lola can survive a stroke, then I can deal with falls. I decided sometime through my pregnancy I was NOT going to be a paranoid mama. Although I hesitated while Lola was in the NICU, I realised Lola had survived a stroke and falls seem so minor in comparison. Not to mention, easily dealt with.


Thanks for sharing!

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