parenting

A bunch of my fellow mothering peeps have been writing posts every week about "real" moments, not just the shiny, happy blogpost-worthy moments, of motherhood. I fully intended to participate, but, to be honest, usually on Mondays, I don't feel up to facing reality. Either I'm in a really good mood, and don't want to think about "real." Or I'm too grumpy, I couldn't show that side of myself on the internet.

My true confession: most of the time, I don't feel cut out for the stay-at-home-mom gig.
It's complicated to say that. Because it doesn't mean that I don't love my kids or want to be with them. Nor does it mean that I don't embrace the ennobling aspects of raising children. It's hard to make the mothering jive with the other desires and gifts rolling around in my head. And I wonder how to play things out practically.

I keep trying to write a post about this, but I can't quite explain it. What IS real? The truth is, I'm trying to figure out a lot. It's part of the reason, I haven't been blogging so much. I used to just brain barf on my blog, now I don't feel so free to do that.

If we could just paint all day, I'm sure that would help. Who needs to tidy up and do laundry anyway?

For the rest of the peeps, check out the list:
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First of all, the blog carnival: Ministry of Reality Monday. (do we even have blog carnivals anymore? not even sure what to call it. A meme? But anyway, a bunch of my mom peeps are doing it) For those of us who don't always post the shiny and happy on the blog. For more background read here.

So, this my Reality Monday story.

I am a bad citizen. I avoid the public library. By the time I pay the fines I inevitably will incur despite my best efforts, I may as well buy the books on Amazon. I'm trying, though. Determined as ever to turn a new leaf (ha!), I finally got a Free Library (as they are called in the city of Philadelphia) card after having moved into the city in October. Because kids need exposure to libraries.

I, myself, have wonderfully fond memories of going to our library. I think I may have read every book in hte juvenile section. I remember our library trips as being fun. And my mom reading us books, and browsing and browsing through stacks.

So I think, I need to get a library card so that I can my kids to library to browse stacks and read stories. This picture is simple. It seems reasonable. We read stories at home. It's not like they don't get the book thing.

But reality is this: My 2yo, Marlowe, proceeds to grab EVERY book, "mommy! wook!" (that's "look") within about 10 seconds of my locating the juvenile section. My 5yo wants to play on the computer, but I tell him to pick 3 books. He is unsupervised browsing the stacks while I try to reign in Marlowe. All I want to do is read M the Fireman Elmo book, so that he'll calm down for a sec. Ellis picks three books. They look reasonable, though the third one may need a little "retelling." Then they find the DVDs. "mommy!! moomee!!!" (movies) OK! Pick three!! then we're done. No snuggly story times. No leisurely browsing. No ceremoniously presenting the library card. We are so out of there!! 10 minutes. And, I do it for you, dear children. Eventually, I will be less diligent about those darn DVDs, and you will cost me money. I could've just bought it on Amazon.

But this is so their freshman comp teachers won't hate me.

Today Chris and I were on our first parent panel. We were asked to come to a regional meeting that the State Dept of Ed sponsors for those who are service providers for children with hearing loss. There were people in the room from all over eastern Pennsylvania. Also on the panel was another mother of a kid from PSD; her daughter was in E's class last year. And a mother whose kid was in an oral program. All three kids represented are going into Kindergarten next year. It was a good experience. I hope we were able to be helpful.

I thought I would list the questions and the answers that we prepared. We didn't really follow them as a script, but it was helpful to write out something to organize our thoughts. And also, the usual caveats...this is what is good for our family, but I think there are some general thoughts that anyone going down any deaf educational path could find some benefit from.

1. Please share how the news of your child’s diagnosis was shared with you and what information and resources were given to you at the time of diagnosis.

We came to understanding of Ellis's diagnosis gradually. It took us awhile to understand what the "referred" meant after he failed his newborn hearing screen. We had an appointment with an audiologist at Temple Children's that was not helpful at all when E was 2 months. When E had a "no response" on his ABR, he said that didn't tell him how much hearing loss that he had. This audiologist only told us that E had "some hearing loss" and gave us an Early Intervention number to call for our county. It wasn't until E was around 7 months old and we transferred to CHOP did we get a clear diagnosis of profound sensorineural bilateral hearing loss. And we were already happily enrolled in an EI program. The audiologist at CHOP introduced us to hearing aids and was the first to suggest that he may be a candidate for a cochlear implant.

2. Describe your and your family’s feelings at the time of diagnosis and what type of support (if any) that you found helpful during this time.

I think it did help that we came to a gradual understanding of his hearing loss. We had no defining, black-and-white moments where a diagnosis was handed to us, the unsuspecting parents. But overall we were actually very calm and accepting. To us it didn't seem like a tragedy. All we saw was a healthy, happy baby, and walking through a children's hospital where babies are fighting for their lives really puts things into perspective. I think the Early Intervention support we received from PSD was the most helpful. Our home visitor became a vital part of our life those first couple of years, and we still keep in touch with her.

3. How was the Communication Opportunities shared with you and your family? Do you believe that all options were equally available to you and presented to you in an unbiased manner?

I do believe we were presented with all the options in a very fair way. When I first made the call to Montgomery County's Early Intervention, I was asked whether or not I wanted to sign. At the time, I didn't know not-signing was an option. I just assumed that all deaf people signed. We all remember Linda from Sesame Street, right? When presented with the question, I did ask for some clarification, and the woman gave me brief descriptions of the programs at Clarke and at PSD. I remember jotting down in my notes that she seemed to be nudging me towards Clarke. But still by the end of that conversation I couldn't fathom a reality of not-signing.

When we began our Early Intervention with a teacher of the deaf from PSD, one of the first things she did was to make sure we truly understood all our options. We had a tour of Clarke [oral school], of PSD. She gave us things to read. We really felt like we could ask her anything and make any decision we felt comfortable making.

4. When and how did you come to a decision of what communication option(s) you were going to use and do you believe you had access to qualified professionals in your choice of communication?

From the first day when hearing loss was even brought to the table, our commitment to Ellis has been that he have as much access to everything that might help him. We learned that if he is to have 100% access, that ASL must be available to him, and that he must continue to learn it as well as we would expect a hearing kid to speak. But we also want to give him the benefit of a cochlear implant. His right ear was implanted when he was 2yo and speech therapy and a high auditory access classroom at PSD are part of his IEP, in addition to instruction in ASL. In order to be truly bilingual, he must be allowed to develop to the maximum of his potential in BOTH languages. So that he may easily choose how he moves through his adult life. For us, we felt like we were limiting his life choices if we chose only one mode of communication. In our house, learning another language is par for the course, and ASL is no different.

I do think we were given excellent resources and opportunities. The Mont Co EI and then preschool division bent over backwards to make sure we had just the IFSP/IEP we needed for our bilingual approach. Even though it was a little outside the box for them. PSD also offered us a lot of extra opportunities that weren't "on the books," such as a Deaf Mentor program and the shared reading Program, where a Deaf adult would come into our home and help us learn how to read children's books to Ellis in ASL.

5. As parents of children who are deaf or hard of hearing, we need to learn quickly how to embed language learning into our home environments. What tools/skills did you and your family learn during the early intervention years to support your child’s language learning at home and in their community?

ASL was crucial. Ellis didn't get a CI until he was 2yo. Before then the hearing aid he had didn't give him an language benefit. If we hadn't signed, he would've had no access to language in those crucial 2 years. Because of signing, we have seamless communication if the technology fails. There was actually a time when the processor on his CI and his backup CI both failed simultaneously. It was crazy and it took a long time to figure out. And then they have extra time getting a replacement with a processor, because it has to be programmed.

It's great to have more than one modality for language if technology fails. There is always language, be it ASL or spoken English. We never lose. It's always win. Language is the goal.

6. Please share with us any advise you believe would be helpful to another family who will be on this journey after you.

Another mother brought up the good point, that it's up to the parent to be an expert in everything at the IEP meeting. To really understand what's going on so as to be a good advocate for the child. And then I thought one step further, it's great to do this for the sake of your child. And hopefully it will show them how they can gradually take ownership of their own advocacy, so that they can stand up for what they need.

But we brought to the table to answer this question was this: Talk to Deaf adults. They're lovely people, and they want to tell you that being Deaf doesn't limit them from doing the things they want to do. They want to show that being deaf isn't scary. No matter which mode of communication of avenue of education you choose, there will always be deaf adults on the other side. Talk to them. They will give you a more wholistic picture of your child than just the speech banana your audiologist gives.

Or, Sometime You Don't Get What You Want.

Act 1
Scene: getting ready for school.

Mom: Ellis, go upstairs and brush your teeth.
Ellis: yells NOOO!
Mom: Ellis, remember what Daddy said about yelling. That is not nice talking.
E: oh. I'm sorry, Mommy. hugs
Mom: Now go upstairs and brush your teeth.
E: No, thank you, mommy.

Act 2
Scene: Marlowe has discovered the container of cookies in a bag of stuff Grammy sent over. M would help himself but can't get the lid off.

Marlowe: PLEASE!!!!!!!
Mom: No, Marlowe, those are for when it's light out. You can have one tomorrow.
Marlowe finds Ellis and hands him the container PLEASE!!!!!!!!!

Thankfully, Ellis was more than happy to play the role of boss: No, Marlowe.

On being a fun mom:

When I'm a fun mom, the kids get to do cool stuff. Like play with water. Or paint. Or scoop rice. They have a blast. They are doing great things that are developmentally good for them. I don't go all free reign with them, but I do hold back the war cry of "Mess!" some.

There is nothing that either my 19mo or my 4 1/2 yo loves more than to play with a trickle of water in the sink. Pouring, filling, stirring. Great activities for the 18mo developing motor skills. When I'm a fun mom, I let him do it, and then mop up later, suppressing the urge to cringe and enjoying his happiness.

The other day Ellis spent nearly 20 minutes moving about 15 popcorn kernels around an empty egg carton that had some leftover liquid purple watercolor in it.

The busy-ness! The happiness! The learning! *sigh* The mess!

1. If I run out of Hyland's Teething Tablets should I wait several days before getting more or should I run with all haste to the nearest teething tablets distributor to replenish my supply?
You should run with all haste. No, nursing won't "do" in a pinch. Unless, of course, you want to stay up all night long with the baby. Upon taking the teething tablets, you will notice a demonstrable calm settle over baby who, like, all of a sudden is going to sleep of all things!

2. I have a hard time at the end of the day, say from about 4 pm on. It is a very chaotic time and my patience is thin. Any ideas to help me relax?
Well, I have found that well-timed glass of wine, preferably shared with ones spouse over dinner does wonders to relax and rejuvenate the parenting soul to soldier on through bedtime. Yes, relaxing and rejuvenating are kind of opposites. Um. I'm too tired to sort this one out. And then when the kids are in bed, you can either a) have another glass or b) have coffee ice cream with chocolate syrup on it.

3. The DVD player is not hooked up, what should i do with my sick kid?
Let him watch a DVD on your laptop.

4. We're moving in two weeks. I stink at packing. What should I do?
Weep, sort papers, weep, watch hubby mow through boxes like a freaky packing machine. Focus on how you'll have three times the space and can walk to school. Eyes on the prize!

Ellis runs ahead of me in all his four-year-old boy vivacity. As I lumber along with the baby on my back, lugging our little bag full of snacks and water bottles, I watch him, waiting for the moment, just before he disappears around the corner, when he'll turn around and make eye contact. I wave him down signing WAIT FOR MOMMY! but he's already plopped down on the park bench and signs WAIT. As I get close, up he pops again, and I watch the back of his head bounce, jump, and dash along.

Cut to later. Ellis is picking up his fifteen-month-old brother. Again. He adores his brother, but sometimes his love is a bit too lavish. I kneel down, fully intending to affirm his love, but to talk with him about more appropriate ways to express it, while firmly prying his arms away from the baby, who is screaming his head off. Ellis drops to the ground, flailing and squeezing his eyes shut.

Four years ago, when we learned that our brand new baby was born profoundly deaf, we knew our experience as parents would be different. We got a kick out of being able to vacuum in the same room as a sleeping baby. We cheered at his vocabulary of ASL at such a young age. We stomped the floor to get his attention.

However, I feel like it's only been this year that I've really begun to get a glimpse at what it means for Ellis to be deaf, and deaf in our hearing family. I've started to see how he settles himself socially. Personally, I'm starting to see the particular ways I fall short as a parent. True, nobody is a perfect parent, but I'm speaking of the ways in which I struggle as a Hearing Parent of a Deaf Kid.

The primary aspect of this unique experience is communication. We are settling into the bilingual dance between spoken English and ASL. Two years ago Ellis got a CI. He's doing pretty well with it, his receptive language is stronger than expressive. I can talk to him without signing through the simple aspects of our routine and that works out fine. He doesn't like to wear it at home. We don't press him to, but, I will admit, I may or may not have bribed him with chocolate milk to wear it at home sometimes. He wears it at school or usually any other time when we're not home. He is most comfortable with ASL, and that is the language we use with him primarily, even if we are speaking, too. This is especially true in discipline situations, where I need to use whatever language we have to its fullest, and since ASL is his preferred language, that is what I use.

From the beginning, we've pursued our education in ASL vigorously. We've taken classes, lived in the dictionary, had Deaf Mentors. But we are far from native signers. We get by. We can communicate fairly effectively with our four-year-old: we can read books in ASL and talk to him about the world around us.

I have found lately, though, that my ASL is starting to fail my parenting needs. It's taken me awhile to figure out what the matter is, because I know the signs and how to use them, but somehow I'm failing to communicate. I think there is a Deaf presence that I don't have. I'm not really sure how to describe it. A way of using my body that transcends the actual signs, that enters into his space, meets it, communicates with it. Connection is a key part of my parenting philosophy and to be so defeated by the basic communication that I need to make it happen is beyond frustrating. It has deeply discouraged me in these past few months especially.

It's not all a total big Fail. We do get along, after all. We do connect. I give him as much physical presence as I can. I give him as much language as I can. And we are a happy family. But sometimes I look at my hearing friends with their hearing kids--parents and children who speak the same native language--and wonder at the ease of it all. To just talk, effortlessly.

He shuts his eyes. Bam. Communication stops. He glances away from me, focusing back to his play. Communication stops. Sure, he might pick up more than I think peripherally. But it is unnerving to have the eye contact lost. The conversation could just be small talk about his play, but it is lost mid-sentence. Is my signing that weak? Do I not have the persona to indicate that I'm talking to you? Ellis seems to think that I can only hear him if I'm looking at him. He screams my name while I am driving until I glance back giving him the visual acknowledgment that I hear him. (Dang! We need a mirror!) He also thinks that if I don't acknowledge him the split second he says my name that I must not hear him, so he repeats it at blood-curdling volumes, until I can turn to him. I'm rambling a little. This summer has been a roller-coaster. My nerves feel shot from his screaming my name, though it's getting a little better.

He's changing socially. We were at a birthday party with all hearing kids, kids he's known since infancy. Another guest, another little boy, ran up to Ellis, hi! what's your name? Ellis didn't know what he said. How much do I step in to intervene? Do I translate for E? Let it go and watch him slip into isolated play? Do I go through the conversation for the bazillionth time? oh, hi. His name is Ellis. He can't hear you, so we talk with our hands. can you say 'hi' like this? Some kids get into it. Some feel awkward and back away. Bless the little British kid at the park the other day who made fast friends with E despite his curious quality.

How do I balance it all? As a mother I want to protect him from all this. I want to make a world that fits him perfectly. I don't want to have to teach him how to negotiate through languages and worlds. I wish I had more to offer him. Yet at the same time, he's doing a pretty good job. Sometimes, I just have to stop and let go. Let him run ahead, trusting that he'll turn around. After all, I am not in control. The God who gave me Ellis also has Ellis perfectly in His arms.

Yesterday was the first day of the new school year for Ellis. Since we've been involved with school since his first year (early intervention), it seems old hat to us now, even though he is only four. But he moves up to a new classroom. He's in the class with the kids with the most auditory access. And yesterday he came home signing so much. I think we all missed school.

I'll admit, it's been a rough couple of weeks. Not always knowing what to do with my super creative, active boys. I feel the language gap so strongly sometimes. My ASL can barely keep up with my parenting needs. School gives all a little more structure to our day, outlet for creativity, satisfies Ellis's social needs that I can't satisfy, and a few hours of peace at home. I actually *gasp* got the living room clean with no other major household disasters yesterday. It was awesome.

And so my brilliant, confidant, sweet boy ventures forth on another year!

I've been wanting to do a little post about Marlowe since he turned 15months a week ago. But well, let me just tell you something.

Last Tuesday, a week ago today, he turned 15 mos. I heard him bustling about in the kitchen, assumed he was at his usual chores of emptying all the cupboards of tupperware and pots and pans. He's so helpful that way.

I walk in the kitchen, and he's actually standing on the kitchen table eating a bag of blue corn chips.
I'm pretty sure Ellis could only walk for about two weeks when he was that age.

I spend all day making sure Ellis is not hauling Marlowe around unwillingly. Making sure Marlowe isn't crawling up some scalable delight.

The rest of the day revolves around Marlowe's favorite word: NAH.
It means, "I want that." He says it all day and points to everything, because basically he wants everything. He will sign and say PLEASE! NAH, PLEASE!!! It's so nice, really. It's just nearly impossible to satisfy.

Some other words are dog, woof-woof, duck, choo-choo, Daddy, Ellis (yuh-yih), hot (accompanied with a blow), please, thank-you, all-done, night-night, and others. It's just hard to think of what they are with NAH resonating in my ears. He signs them all, too.

He's a pleasantly demanding child. NAH!!!

While I took a quick shower during Marlowe's morning nap, Ellis dismantled his room.

I should step back. A few days ago Chris remarked that Ellis had not made a fort in the new bunk bed yet. I pointed out that the bunk bed already is kind of a fort. So when I saw Ellis amassing pillows and blankets before I got into the shower, I smiled thinking now he was building his fort.

When I got out, every toy box had been dumped into the bottom bunk. ALL the toys were in the bottom bunk. All the furniture was moved. And the rug balled up halfway. He was making a room fort. These Joneses. They don't do things by half. He was so focused that it took me nearly an hour to pry him away for park day.

When we got back from the park and hot outdoor play, I plopped him in front of the TV to cool off, and I set about putting his room back together. I actually rearranged it a little bit. And put all the toys back. And vacuumed. It took 2 1/2 hours to undo 10-15mins worth of destruction. But it's roomier now, and I wouldn't have rearranged it if he hadn't done that. While I cleaning, he TP'd the couch. Then scooped up all the toilet paper, put it in a plastic bag, and filled it with water.

Just reporting facts here.

We went to IKEA for dinner.