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In an effort to try to start believing everyone who tells me I’m a good mother, with good instincts, I took the following small steps.
I elected to get rid of our EI nutritionist. Our styles didn’t mesh, and every instinct I have says that our continued efforts to “fix” Elanor’s eating habits are a mistake. She is gaining weight…at a slower pace than I would like, but she is staying on her own little growth curve. She is not getting dehydrated. Every time we do something to “fix” her eating, it gets worse. I am going to back off, and let her do her thing. It’s working, and it’s time to stop interfering with something that’s working.
We’re keeping the high chair. As my husband says…who cares if she ever eats a speck of food or an ounce of liquid in it? She can sit with us at the table. We put the high chair together this morning before brunch and it was an awesome meal…not just because of food, but because she was at eye level, and we interacted with her a great deal. She laughed and kicked and showed us how happy she was there. That alone is worth the cost of the high chair to us. FYI, we’re getting the booster seat too, for the grandparents/travel.
I try to tell myself each day that her happy nature is a product of love. She feels loved and safe…she couldn’t be so happy otherwise. Which means I’m doing *my* part.
Being a mom is hard. But hopefully with my own baby steps, I’ll start to gain confidence.
Things are slowly improving.
We are in our new apartment. Having our own space and sleeping in our bed helps. Creating a safe home for Elanor helps.
But in the end, I’m still struggling—-I just don’t have confidence in myself as mother.
I’m not looking for platitudes or reassurance. I’m just sharing where I am and why. The truth is that my husband is constantly telling me he thinks I’m a good mom. But all I need to hear is a critique (or something I perceive as a critique) from anyone, and that’s what stays with me. For example, we had the Early Intervention nutritionist in to see Elanor yesterday–she was critical about Elanor having started solids (at the advice of our GI), and was very anti high chair for Elanor and when she left I just collapsed into a sobbing ball of self-doubt and hatred.
I was actually convinced for about an hour that my husband and child would be better off without me. That I should leave. That I don’t deserve to be Elanor’s mom.
Because I had ordered a high chair and EI said that was wrong.
It sounds stupid when I look at that typed sentence. How could I have had a break down over that?
But it’s not that one specific thing…it’s feeling overwhelmed, it’s that my daughter having food issues is a highly emotional trigger for me because I have food issues, it’s my poor habits surround my anti depressants, it’s self doubt and lack of confidence.
I’m the kind of person who thrived on getting good grades as I was growing up. The problem with that is there is inevitably a point in time when you stop getting grades. I, however, interpret peoples comments as defacto grading. And the personality that drove me to question why I had just gotten an A instead of an A+ isn’t adjusting well to the plethora of conflicting advice I’ve recieved.
The bottom line is that there is no one true way to raise a child. You have to make decisions as the parent about what’s best for YOUR baby. In my case, I don’t trust those decision making skills.
I’m talking to my therapist about this but in the meantime I just have to focus on getting through the day…and not giving in to the little voice that urges me to leave. I know it will be okay…some day.
Right now I’m struggling…
I think it’s a lot of things compounding in on one another without the chance to really digest any of it, resulting in something not unlike post traumatic stress disorder….
1-Our visit to the PICU to see the doctor who saved Elanor’s life. On one hand it was amazing and I was so happy and proud to share how far my little girl has come since the day they first met her…in organ failure near death. But on the other….I’ve been flashing back to those days a lot. Elanor’s room was the second from the entrance to the PICU and it was impossible for me not to see it, not to remember when that room was my whole universe. Not to remember what it was like to sit by my daughter’s side, reading aloud from a dr. seuss book or some other kid’s book wondering if she’d ever get taken off the ventilator, wondering when or if a doctor would promise me that we could start thinking about Christmas, about her first birthday. I remember vividly finding out about her stroke, crying near hysteria with fear that it would ruin her life-kill her potential. Looking at her and seeing a stranger instead of my turtle. I remember that far more vividly than I do the relief in my heart the first time she cried out weakly after they removed the ventilator, or the joy when she made her “turtle face” at us and we saw our daughter and not a stranger in her face.
2-A friend’s husband recently was in the ICU. She reads this blog and I want her to know that I wouldn’t have wanted not to know, and that I think of her constantly even though I haven’t been able to bring myself to write on his carepage or to email her. But hearing about a loved one in the ICU, knowing in my soul how awful it is, what life in the ICU (even if my experiences were in the PICU and hers are in the adult ICU) is like just makes my heart ache.
3-A letter I received a day before the story broke on the news.
“Over the past six months, 18 mothers and 19 newborns have become sick with a dangerous bacterial infection soon after being released from Beth Israel Deaconess Medical Center, triggering a state investigation that uncovered serious problems with the hospital’s infection control practices.”
I don’t know if what happened with Elanor is part of this. I don’t know what to say. I don’t know if this is finally something I can point a finger at and say “THIS…THIS is why my daughter almost died, you fucking assholes”
All the peace I had found with the idea that I would never know why my daughter became so ill, all the progress I’d made coming to terms with what had happened, all of my ability to look at things from the “but she’s so much better now” perspective…are gone.
4-The move. Upheaval, change, the absence of my “safe” spaces that I go to when overwhelmed are not there. And we’ve been moving stuff every night, so my back has been hurting like hell.
5-Staying with my in-laws. See #4 for why. Add in the fact that I feel like a visitor in their home and mix well with the fact that we are raising Elanor very differently from the way that they raised Ravi, add in a number of comments from my MIL which could very well just be commentary but which I am taking as criticism (“When are you bathing her?” “After the move; babies only need a bath once a week or so” “I bathed Ravi every day”) and stir.
6-Ravi and I have been sleeping apart since Monday night. His bed at his parents is a double, and the baby refuses to sleep in the pack n play so she needs to be in bed with us–all 3 won’t fit in full, so I’ve been in the guest room with Elanor. Oh, and the bed is hard as a rock, so with the back pain from moving crap I’ve been sleeping even more poorly than I would have with just R’s absence. When Ravi and I lose out on couple time, our communication begins to deteriorate, which in turns makes me feel like I’ve lost my support network (even though of course, he’s not my only source of support, although when I’m depressed I tend to forget about the rest of it).
7-I haven’t been great about taking my Zoloft. With the change in schedule and the loss of routine, I haven’t remembered my Zoloft every day. Which, of course, impacts my mental health and my ability to cope.
So, all of that in a two week period or so….with the last 4 in the last week….and I’ve regressed. I’ve lost all the progress I’ve made in coping with Elanor’s illness/recovery/whatever.
I’ve actually regressed back to the point where I’m terrified of being apart from her. Because I am *convinced* that something bad is going to happen. That I’ll wake up and she’ll have died of SIDS during the night….I’m waking up 10-15 times a night and the first few seconds are always a panic until I touch her and feel the rise and fall of her chest. That she’ll become dehydrated and we’ll have to take her to the ER and she won’t come out this time. That she will die.
I’m not okay.
I confessed all of this to Ravi tonight. At a hotel…in the room he’d offered to get us when I made a point of saying that I was thinking of sleeping at our old apartment, even though there are no pillows or sheets. Just to get away. Just to be in a safe space. The hotel room we’re staying in until Sunday. Where we have a King bed…where all three of us can sleep together.
I know things will get better.
After Monday, we’ll be in our own space again. We’ll be back in our bed, with Elanor’s crib against my side of the bed. It will be forever until we’re unpacked and babyproofed and all of that, but it will be our space. That we can just be ourselves in.
After Monday’s big move, I’m going to get in touch with the Infectious Diseases people who treated Elanor at MGH and ask if this could possibly be part of the BI outbreak. And if so, what do I do?
Next Wednesday I see my therapist and I’ll talk to her about all of this. I certainly thought about calling her today, but trying to squeeze in a visit would only make me more stressed, so I decided against it.
In the meantime…I’m struggling.
My darling Elanor
You are five months old today. 151 days on this earth.
Yesterday brought back those early days when no one was sure if you would make it this far. We were at the hospital to check in with the gastroenterology doctor when it occured to me that the PICU staff might want to see you…to see how well you’re doing; how big you are, how alert, how happy. So we went up to the PICU to say hi. We saw the doctor who was there the day you were admitted. We saw several of your nurses. The nurses were practically in tears to see you, and I was practically in tears seeing them. We got a picture of you with the doctor for your baby book…so when you’re truly ready to hear the story of those early days, I can point to him and say “this man was instrumental in saving your life.”
As someone who has suffered from depression throughout my life, even on several occasions being so depressed that I thought about taking my own life…I feel a slightly irrational desire to instill in you that you should NEVER attempt to cut your life short. You fought so hard as an infant, and so many people fought to help keep you alive. I feel, on some level…fair or not…that you owe them, and more importantly yourself. I want you to try to live a full life, to achieve all that you are capable of. Any less would be a slap in the face to the one week old who fought to keep her life going.
You are a remarkably happy baby. With the exceptions of hunger and tiredness, you rarely are missing a big grin. I love especially the smile you reserve for me. The one that shows your love and trust.
In the past month you have discovered your feet and have found them to be tasty tasty treats. I am endlessly amused by this, and enable you by constantly removing your socks when you’re indoors so that you notice them. For some odd reason, you only seem fascinated by them when they aren’t covered by socks or shoes. I’m not sure why, but since there are few things cuter than baby feet, I am content to just go with the flow and keep you barefoot in the house.
You are growing by leaps and bounds. As of this week you are 24 inches and 12 lbs 3 oz. The 24 inches in particular seems remarkable to me. I don’t know why two feet seems so much more significant than 1 foot 11 inches, but it does.
You are also a remarkably adorable baby. I will admit to doing everything I can to enhance this—I have bought a painful amount of baby clothes you will quickly outgrow simply so I can put you in matching little outfits. A pair of pink jeans with a pink hat specifically to go with a pink and white striped sweater. I try never to leave the house with you in a sleeper…I like you clothed and adorable. I can’t help it…the praise you get when I take you out dressed adorably coupled with your own bright personality is addictive. You shine when people talk to you.
Early intervention continues to be underwhelmed by you, and I in turn remain grateful for this particular status quo.
Unfortunately, Elanor, you have been diagnosed with food allergies and I, in turn, have 40 oz of breast milk I need to find a home for. I have a potential recipient lined up, and I hope that it works out. Your GI doctor says you won’t be able to have the breast milk, so I want to find a good home for it. After all, it was created out of love for you. And it deserves better than the drain or garbage pail. Since the diagnosis of milk, soy, eggs, and nuts I have stopped pumping. Your daddy and I both cried as you drank the last bottle of breast milk. I miss how breastmilk was good for so much longer than formula…I miss that it smelled better…I miss how happy you were to drink it, although you have adjusted very well to the formula.
In a week and a half we move to our new home. I can’t wait to see you there, and to create your nursery. The one in our current appartment has turned into a storage room, and I am hoping for better in the new place.
with love always
Mommy
I read that today is Autism Awareness Day.
As a teacher, I have had an Autistic Student in my class.
One was a boy who was diagnosed as having Asperger’s Syndrome, which is the “higher functioning” part of the Autism spectrum. He could do math, read at his grade level (3rd at the time) but he could not handle unstructured time and he lacked the ability to empathize. He literally could not see another person’s point of view.
Teaching him was a conscious struggle for me, as third grade testing requires that students look at a story from a different point of view. I couldn’t ever really say to him “how do you think Johnny/Susan feels?” because it just didn’t make sense to him.
However, the toughest part for me was when he began to hang out with the class bully. I tried to reach him and explain why this person might not be a good firend for him, how other student’s perceptions of him were changing. Unlike analyzing a novel, this was a real life situation, and it was going to affect his day to day life a lot more than being unable to understand a third grade reading comprehension question on a state test.
I ended up talking to his mom. Who just banned the bully from her home and then expected me to keep them apart at school. Which I could do in structured parts of the day, but not the more unstructured parts.
What makes teaching an autistic child who has been mainstreamed toughest, in my very limited experience, is how unprepared I felt to teach him. Unlike a student who was a kinethestic learner instead of a visual learner, or a child who needed things broken down into more steps, to go slower, to go faster, to use manipulatives….whatever….I just hadn’t been trained to know how to reach this child.
What I think I remember the most, when I think about being his teacher is the frustration and defeat I felt. He was a genuinely sweet kid…he was funny…I remember that he had a great smile and that his ears stuck out a bit. In so many ways he was just like all the other kids. But I constantly worried about whether he would continue to have friends if he couldn’t understand or empathize with the idea that if he was unkind, people wouldn’t want to be around him.
I still think about that child. He’d be in tenth grade now. I wonder if he’s still mainstreamed. I wonder if he’s learned any social cues.
And the thing is….he was high functioning.
I can only imagine what it must be like for parents of a lower functioning autistic child. One who might do harm to himself through repetitive behavoirs, like banging one’s head against a wall (a student in the substantially seperate Autistic Class in one of the schools I have taught at did this) as a calming measure.
I understand the desire to find a scapegoat to blame. I know if I could point a finger at something specific and say “THAT…that is what almost killed my child” I would feel less powerless than I do now when I think about her illness. Which is why I get it when I hear parents blame vaccinations.
However, when vaccinations have been cleared of all blame, I feel like it’s counterproductive to stay so monofocused. Research is needed, but lets stop pouring it into trying to prove the vaccine theory. Let’s research genetics…I’ve heard that there might be some causality on a fragile X chromosome, which explains why more boys are diagnosed than girls. I dont’ want to make this post about vaccines, but I would urge parents, whether to autistic children or not, to fight for more research into this puzzling disorder. What really causes it? Can it be prevented, or made better; is there a gene therapy?
In the meantime, my hat is off to you, parents of autistic children…keep fighting for your lovely sons and daughters. They deserve answers, and so do you.
