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Name: Amy Nixon
Children: Daughter, 3
Work: editor of metroparent west magazine, 30West magazine, specialty publications and design editor at Lake Country Publications
Favorite part of being a mom: Snuggle time is the best part of my day!
Least favorite part of being a mom: Accepting the fact that my house is never really going to be neat and tidy again.
Little known fact: I've been almost 6 feet tall since the 5th grade.
Self-reflection is a funny thing.
I think it's safe to say that the majority of my coworkers and acquaintances would describe me as soft-spoken, even-tempered and maybe even quiet.
To my daughter's doctors, however, I'm likely viewed as the opposite: assertive, demanding and maybe even authoritative. Yes, to them, I'm "that mother."
I was having a glass of wine with a couple of coworkers last week and was explaining to them how I have to call Avery's doctors several times until I get a response back. I was explaining that when she's been poked over and over again and the phlebotomist(s) is not able to get a blood draw, I demand (although as nicely as possible) to have another person called in. At a recent hospital stay, the nurse started going over release papers with me before the neurologist had made it in for rounds. When I said I didn't feel comfortable being discharged without speaking to the doctor, I was told he was in surgery and we'd have to wait. Fine with me, I said. And we waited several hours.
The thing is, when it comes to my kid, I don't care what anyone else thinks about me. Admittedly, in every other life situation, I do care. I want my coworkers to like me. I want my friends to respect me. I want my family to find me comforting, caring and supportive. But when it comes to Avery, I'll be as demanding as I feel necessary, thank you very much. I'm doing what I think is best for my kid.
Recently, we've been struggling with several different opinions from several different doctors. This is extremely hard to deal with, and it's almost impossible to know if I'm doing the right thing when it comes to making medical decisions. In a conversation with our pediatrician last week, I told him I was struggling to find the balance between allowing test results to have me in a panic or simply waiting a week to re-test.
"I don't want to be the psycho mom who is freaking out over this," I told him. "But I also don't feel comfortable waiting a whole week to test again."
"If anyone calls you a psycho mom, they haven't walked a minute in your shoes," he responded.
And last night, I was emailing back and forth with another member of a support group online who told me, "When in doubt, go with your motherly instinct. And don't apologize for it."
When it comes to being a mom- following your instincts is really all you can do.
So what kind of person am I?
I'm soft-spoken. I'm even-tempered. I'm often quiet. But most importantly, I'm Avery's mom (which means throwing everything else out of the window if necessary - and not apologizing for it.)
On Sunday, I was in the kitchen cooking dinner while Avery was in the living room watching Mickey Mouse Clubhouse. This is a show she's "watched" lots of times over the past year or so, but what I saw Sunday was a first.
In every show, the viewers are asked to help Mickey and his crew choose the right tool to accomplish a task. Although Avery has watched the show several times, as I mentioned, she never once responded to these questions. But Sunday, I watched in awe as she pointed to a ladder when Mickey asked what they could use to get something on a tree branch. Not only did she show that she understood she was being asked a question, but she also picked the right choice! I was thrilled. Moreover, I watched her point at several other choices throughout the show. She didn't get them all right, but I was so excited that she was starting to grasp the concept.
This small feat came after a difficult Friday, in which Avery was evaluated for autism. Her neurologists were concerned that her undiagnosed neurological disorder might actually have triggered autism. We were told, however, that although she displays some of the characteristics of autism, it wasn't enough for a diagnosis. This is of course great news for us- autism on top of all of her other medical issues would be a lot to deal with. On the other hand, we were told once again: "We don't know what this is." And that's hard to take for any parent.
So today, I'm rejoicing in the small stuff - even if that means I'm jumping up and down that Avery pointed to a ladder.
Every day starts out the same at our house. I wake up early to get myself ready for work before getting my daughter Avery up and ready for the day. And every day we have the same struggles. She doesn't want to put on her clothes. She doesn't want to take her medicine. She's hungry and she wants to eat NOW. And that means, she's actually screaming EGGS! EGGS! EAT! EAT! EAT! over and over and over as she watches me or my husband hurriedly prepare her breakfast. Because she struggles so much in her understanding of language, she can't conceptualize that we're cooking which means she'll be eating soon. She's hungry and she wants to eat NOW.
After she eats, she spends some time in front of the TV watching Elmo as I finish packing her bag and loading up the car. When it comes time to get her coat and shoes on, there's the temper tantrum that follows. Lately, the only way I can get her out of the house is to just start heading for the door and telling her goodbye and that I'll see her later. Once I do that, she runs after me shouting "Wait, wait," and I finally get her out of the house and into the car.
On the way to her sitter's house, it's the same every day as well. She wants chips. And I wonder how she could possibly be hungry and I'm saddened by the thought that maybe the food is just somehow comforting to her, that maybe asking for chips and getting them is a way for her to feel some control in her world that must seem so out of her control. I tell her she's just eaten and that she can have chips later. And I then I try to focus on getting to our destination as she shouts CHIPS! CHIPS! CHIPS! for the remainder of our trip.
Every day, I drop her off and drive to work feeling sad and flustered and stressed and, truthfully, feeling like a bad mom. But every day I go to work with as positive an attitude as I can possibly muster, I smile, I get my job done, I somehow manage to focus. And people are always asking me how I can seem so calm and how I can possibly come to work with all that's going on. That, of course, makes me smile, because I know that on the inside, I really feel like I'm having a nervous breakdown. There are a million things swirling through my head and it's everything I can do not to let that all come spewing out of me during the work day. And while that's a good thing for my coworkers, I often feel like it'd be nice to have a "scream room" where I could just step in, let it all out, and then quietly return to my desk.
It's hard holding everything in all the time, and that's why I'm finding this blog so helpful. And while not all of us blog, I do think it's important for every mom - not just moms with special needs kids - to find someone or some way to release what's swirling through their heads. It's just too hard to keep it all together sometimes. I think the only way to really avoid that nervous breakdown is to let someone else know how you feel. So thanks for listening!
Yes, I know the old adage: And the truth shall set you free. However, when I recently received copies of several therapists' reports on my daughter, Avery, I felt, instead, that I had been slapped in the face.
Avery has just finished up her evaluations with the school district prior to her IEP meeting which took place last week. Due to her undiagnosed neurological disorder and seizures, Avery has significant delays in speech and needs occupational therapy, physical therapy and the help of a special education teacher. Although I know exactly what setbacks my daughter has, and I'm by no means unaware of how delayed she is, there is something about seeing those results in black and white on paper that I reacted strongly to.
My husband seems confused by this.
"You wanted her to get the extra services with the school district (Avery can now start school in the Early Childhood program when she turns 3 next month) so what are you so upset about?" he asked me the other night.
I wasn't really sure how to respond to that. Of course, I've been pushing for Avery to get services- to get all the help she needs - yet, at the same time, I have often felt like I am in an uphill battle. If I had a quarter for all of the doctors, acquaintances, therapists, friends and even family members who told me she seemed "just fine," I'd be rich by now. I've been pushing and fighting and struggling to get her all the help I knew she needed for over a year now.
But, sitting on the couch last week, looking at those test results, something occurred to me. When you feel like you're one of the only people who sees how your child is struggling, eventually you start to wonder if maybe it's just you. Maybe, I'm overreacting. Maybe, I'm seeing things. Maybe...
But there it was - on paper - and I realized that all along I'd been unfortunately right. There's no maybe anymore- it's right there, slapping me in the face.
What I need to do now is try not to feel the sting and just press forward, using my sadness to further fuel my energy to make sure these delays don't go unnoticed, to make sure that she gets all of the help she deserves.
When I got home from work last night, I was greeted by the cheerful squeals of my daughter, Avery.
“Momma, Momma!” she exclaimed, wrapping her little arms around me and hugging my leg as tightly as she could.
“Da da da, ba ba, t e ta, te ta, ora,” she added.
“Ooh,” I answered back. “So you’ve had a good day?”
“Ora, ora, da da te da ora!” she said, now pointing to the refrigerator.
Puzzled, I looked to my mom, who recently picked Avery up from the sitter and had spent the past hour or so with her.
“Dora!” my mom suddenly shouted out! “I gave her a Dora yogurt earlier. She must want another.”
Although this incident might sound familiar to parents of 6- to 12-month old kids everywhere, to me, the mother of Avery who turns 3 in November, it’s an illustration of just one of the struggles we’re facing on a day-to-day basis. You see, the sudden recurrence of her babbling is just one of the many health issues that we’ve experienced on my family’s journey to finding a diagnosis for Avery.
When Avery was 14 months old, she had her first seizure. Frantic and scared, we called 9-1-1 and were taken to the local hospital, where a doctor told us it was simply a febrile seizure, likely caused by a fever. The only problem with that assessment: Avery did not have a fever.
When Avery had another seizure that same weekend, we took her back to the hospital, where we were told this confirmed the initial “diagnosis” of febrile seizures.
Feeling uneasy, I called our pediatrician first thing Monday morning. He got us in for an EEG at Children’s Hospital of Wisconsin, where we were told Avery had epilepsy. This was no febrile seizure. She was in fact having multiple seizures a day.
Looking back, I’m proud of myself for not just taking the ER doctor’s word as gold. This, unfortunately, was only the first lesson of many in the road to finding out what’s going on with Avery. It’s a road that I’ve grown accustomed to traveling, however, after almost 2 years of countless doctor appointments, hospital stays, trips to specialists out of state, etc., etc.
Although what Avery has is likely extremely rare – so rare, in fact, that so far, no doctor has been able to give us a diagnosis yet – I think that some of what we’ve experienced on this journey is relatable to other parents. We all have to be advocates for our kids. We all have to remember that we are the experts in our own children. And we all have to learn that even if everyone else seems to think that we’re wrong, perhaps even especially when everyone else seems to think that we’re wrong, we should always trust our own instincts.
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