I wish I'd had my camera this morning. If I did, I would have handed it to any passerby at Trader Joe's. Cody was at preschool, so Nate and I went grocery shopping.
I think I've turned a corner recently. The corner I'd been looking for on that long, narrow path I've been walking for 9 months. I really wasn't sure when I'd find this turn in the road. But, I really think I have.
So, there we were in TJ's. I had Nate facing outward in the Bjorn and was wearing him proudly. Yes, I saw a few of the "oh, poor woman" glances, but mostly I got really kind smiles. But after about 10 minutes, Nate had no interest in looking around. He began searching for me. I didn't have his hearing aids in, so he couldn't really hear me and just had to feel for me. So, he turned his head as far as he could and looked up. I kissed his forehead and he just nuzzled right in. Awww, it felt so goooooood. He just kept stretching that thick little neck of his to try to get just a little closer and nuzzle more. I paused in the dairy section and just soaked it all in. I nuzzled right back.
For a moment, I thought I should turn him around to face me so we could continue our lovefest. But, I didn't want anybody else to miss out on his sweet face and smiles.
This is such a huge shift from those first weeks after he was born. I have such clear memories of keeping him concealed in his carseat while I was out and about. I was embarrassed to be his mom. I'm not saying every day is a walk in the park or that I don't still get sad, but I am saying I see little Nate differently now and am proud to be his mom.
- Danielle
Monday, October 5, 2009
Thursday, September 17, 2009
Thoughts on "Glee"
With the Fall TV Season starting up, I've heard a lot of hype about the new show, "Glee". So, I watched a couple of episodes and am left questioning if I should watch it again. Yes, it's clever and entertaining, but I'm finding I have a new hot button that may just cause me to press the off button.
So far I have heard at least 3 negative comments about "special ed" kids. The Glee club is made up of those who are supposedly the outcasts of the school and they have several times made comments that the kids in special ed have more talent, more attention, etc than they do. This is obviously done in a derogatory manner.
If I just turn the show off, what good does that do? But am I being too sensitive or should I speak up? Yes, the show pokes fun at other "atypical" groups, but this is the one that really doesn't settle with me.
Any thoughts? Do I do something about this?
-Danielle
So far I have heard at least 3 negative comments about "special ed" kids. The Glee club is made up of those who are supposedly the outcasts of the school and they have several times made comments that the kids in special ed have more talent, more attention, etc than they do. This is obviously done in a derogatory manner.
If I just turn the show off, what good does that do? But am I being too sensitive or should I speak up? Yes, the show pokes fun at other "atypical" groups, but this is the one that really doesn't settle with me.
Any thoughts? Do I do something about this?
-Danielle
Sunday, September 13, 2009
Hearing Aid Update
(In order to keep his hearing aids on, our Audiologist suggested getting these Hannah Anderson Pilot hats)First, to review our findings in regards to Nate's ears.
After 5 hearing tests, we are still unclear as to the exact amount of hearing loss Nate has, but it is believed that he has moderate loss in the right ear and moderate to severe in the left. So, for him, it's like hearing underwater. He hears lower tones, better than higher. A couple of reasons we're having a hard time getting an accurate read: 1) His ear canals are extremely small (even smaller than most kids with DS) and 2) We think he has fluid in his middle ear, but cannot put tubes in yet because his canals are so small. So, he has some degree of both conductive (can be fixed) and sensory-neural (permanent) hearing loss.
Of course, for speech development, get Nate's hearing at its optimal is critical. What we've decided (along with several audiologists and our pediatric ENT) is to get him fitted with hearing aids adjusted to accomodate for the fluid in the ears and then re-evaluate in another month or so to see if his ears have grown enough to see inside the ear and potentially put tubes in. He will then have another sedated hearing test (ABR) and then we can get his hearing aids adjusted for that level of loss.
So, we picked up our temporary hearing aids on Tuesday. Fortunately, the clinic we are working with has loaners, so we can use theirs at no charge until we get a final reading. This will likely be after Nate's 1st birthday and will also be in 2010 when insurance will begin to be required to pick up the very expensive tabs on the hearing aids - amazing!
Unfortunately, the ear mold (the part that goes inside the ear) was already too small when we picked them up on Tuesday. It's a bit of a trial and error system....between the time we get Nate measured for the ear molds and the time they get them made and we get back in to the office, it is 2-3 weeks. Nate is growing so fast right now, that his ears are already bigger and so the molds don't fit snugly. So, we got measured again and will try again in another week or so. The left ear (the very small one) doesn't fit at all as it has to be a nice fit to not give that squealing feedback sound. But, the right one fits a little better, so we're trying to put that one in when we can. The tricky part is getting it to stay in. Since much of his time is spent rolling around on the floor, it makes it tough to get any good time with them in. We basically just put them in when we are holding him or he's in the high chair, so he's only getting about 30-60 minutes each day.
It's clear Nate can hear quite a bit more with the aid in, so we are encouraged!
-Danielle
Friday, September 4, 2009
Help with Feeding, please!
(here's our sweet little guy playing in his high chair - we hope he'll be eating there soon!)I NEED HELP!
Since going to the National DS Convention, I feel really lost about how to start solids. I've been instructed by our EI PT that we should wait a little longer until Nate has more upper trunk stability, but then what? I've given Nate tastes of things and have experimented a bit with a spoon, but I just don't see how I'm supposed to do this.
So, you'll probably say that I should go to a therapist for help...here's where I get totally paranoid...at the convention I went to an all day workshop on oral motor therapy with the woman who invented Talk Tools, Sara Rosenfeld-Johnson. She very clearly expressed that many therapists are not treating children with DS appropriately. Either they are doing the same therapy with all OR they just have low expectations (one friend shared that her therapist said that it's "normal for children with DS to not really chew and that was just how it was". What??? Hello, choking hazard!).
So now I don't know who to go to. How do you know that the therapist you are working with is doing the right thing (ie/ not pushing the tongue in, etc)....
On the few occasions that I have actually tried to spoon feed Nate, I put the food on the middle of the tongue and just sort of held the spoon there. All Nate did was look at me funny and stick his tongue as far out as it could go....what am I supposed to do with this???
If you have any ideas for me, I would really appreciate it!
Thanks so much,
Danielle
Tuesday, September 1, 2009
Sad AND Happy
Today Nate is 8 months old. A twinge of sadness accompanied the day, but not much more than a twinge. Just that feeling of, "wow, 8 months ago today my life changed dramatically".
A lot has changed since New Year's Day. I'm now outnumbered 3 boys (including Bob, of course) to 1. I am just now starting to get into a good rhythm. I think this was the biggest thing I was struggling with - I just could not find a rhythm with the two boys. Cody is a very predictable child and sleeps 2-3 hrs during the day and 11-12 hours at night - yes, he's a dream child! But, Nate has been really, really tough. Okay, well, mostly tough. He has slept all the way through the night from day 1 (one of the benefits of DS), but daytime has been crazy with no consistent naps until the last couple of weeks. Nate is FINALLY starting to sleep most days and I have figured out that if he doesn't get a nap around 9 or 10am, he WILL NOT sleep the rest of the day. And when this happens (which had been the case for 7.5 of the last 8 months), I feel like I'm going to go crazy by the time Bob gets home. So, I'm doing whatever it takes to get him that morning nap - mostly wearing him in the Bjorn while I go about my business. Movement seems to be what he needs to help him sleep during the day. So, if I get him that morning nap, he'll likely go down for an afternoon nap too!
Something more abstract that has changed in these past 8 months is my perspective. No, I'm not anywhere near to so many of the moms who say they wouldn't trade their child with DS for the world - I still would. But, wow does my heart just melt when Nate smiles that full-faced grin. It's a start.
As far as the sadness I expressed in my last post...it's still there, but it's not as sharp. It's a dull, underlying pain that I just carry around with me. It's that sense that a dream has been lost. The sense that I know in my heart of hearts that all is going to be fine someday, but just wondering when that day will come. But, I learned from a friend in pain a couple of years ago that it is definitely possible to feel deep sadness AND great happiness AT THE SAME TIME. I can feel sad that Nate has DS (and all that comes with that), but happy to have 2 otherwise healthy boys, my own health, a great husband, wonderful family and friends, a warm and loving home....and so much more.
Sad AND Happy at the same time. Not one covered up by the other, but in a careful balance, coexisting. You should try it sometime - it feels deeply real and human.
-Danielle
A lot has changed since New Year's Day. I'm now outnumbered 3 boys (including Bob, of course) to 1. I am just now starting to get into a good rhythm. I think this was the biggest thing I was struggling with - I just could not find a rhythm with the two boys. Cody is a very predictable child and sleeps 2-3 hrs during the day and 11-12 hours at night - yes, he's a dream child! But, Nate has been really, really tough. Okay, well, mostly tough. He has slept all the way through the night from day 1 (one of the benefits of DS), but daytime has been crazy with no consistent naps until the last couple of weeks. Nate is FINALLY starting to sleep most days and I have figured out that if he doesn't get a nap around 9 or 10am, he WILL NOT sleep the rest of the day. And when this happens (which had been the case for 7.5 of the last 8 months), I feel like I'm going to go crazy by the time Bob gets home. So, I'm doing whatever it takes to get him that morning nap - mostly wearing him in the Bjorn while I go about my business. Movement seems to be what he needs to help him sleep during the day. So, if I get him that morning nap, he'll likely go down for an afternoon nap too!
Something more abstract that has changed in these past 8 months is my perspective. No, I'm not anywhere near to so many of the moms who say they wouldn't trade their child with DS for the world - I still would. But, wow does my heart just melt when Nate smiles that full-faced grin. It's a start.
As far as the sadness I expressed in my last post...it's still there, but it's not as sharp. It's a dull, underlying pain that I just carry around with me. It's that sense that a dream has been lost. The sense that I know in my heart of hearts that all is going to be fine someday, but just wondering when that day will come. But, I learned from a friend in pain a couple of years ago that it is definitely possible to feel deep sadness AND great happiness AT THE SAME TIME. I can feel sad that Nate has DS (and all that comes with that), but happy to have 2 otherwise healthy boys, my own health, a great husband, wonderful family and friends, a warm and loving home....and so much more.
Sad AND Happy at the same time. Not one covered up by the other, but in a careful balance, coexisting. You should try it sometime - it feels deeply real and human.
-Danielle
Tuesday, August 18, 2009
Sad...again...still
I've been sad lately...really sad. I'm beginning to wonder if I'm experiencing some post-partum depression, but when I look at the "checklist", I don't meet the criteria for the run of the mill ppd. So, am I just experiencing the expected sadness anyone has with the loss of a dream? Is this normal?
It seems to me that so often, other moms with children with DS are so positive. They don't seem to have the kind of sadness I have. They seem to have found the joy in their child. I am still looking for it...Yes, I know there are a lot of things that could be worse, but this is my reality and it's one I never, ever expected to be living.
Nate still can't hear me, so even talking to him doesn't make a difference - I get no response. The only time I get a response is when I make funny faces or give him a bunch of kisses on his neck. We've finally been fitted for hearing aids, so he'll have those soon. But even the thought of hearing aids is overwhelming to me. Take them out every time he goes to sleep or takes a shower/bath. Change the battery every 10 days. And then there's the concern of if they'll even stay on his tiny ears. Oh, and the audiologist said to expect to visit the ENT often to have Nate's already impossible ear canals cleaned out (nobody has been able to even see in his left ear yet!) - it turns out putting plugs (hearing aids) in small canals that tend to accumulate buildup anyway is not a good idea, but that's the choice - ear infections and cleanings OR very limited hearing.
He is almost 8 months old and his activity is still so limited. I feel like I spend the day moving him from one place to another to try to continue to stimulate him - he just gets bored since he can't sit up or move around on his own. And I can't use the items that were good for Cody - they aren't good for Nate's development. So, no jumpers, walkers - anything that spreads his legs apart or promotes an activity that he is not ready to do on his own. So, that limits the options.
And then there are the napping issues. Nate is a champion sleeper at night, but daytime is a different story altogether. He may take a 30 minute nap in the morning if I'm lucky, but then will go the rest of the day without sleeping. So, he is a complete pill the entire afternoon - fussing and crying and only happy if I hold him. At that point in the day, the last thing I want to do is hold him. My mom keeps encouraging me to figure this one out - I didn't realize how much it was really affecting me. Thanks Mom.
Okay, that's my rant for the day. I'm having a tough time.
To my friends who have called or emailed, I'm sorry I've been distant. To my dear sweet husband whose been incredibly loving - I'll find my way back to happy.
Please be patient with me.
-Danielle
It seems to me that so often, other moms with children with DS are so positive. They don't seem to have the kind of sadness I have. They seem to have found the joy in their child. I am still looking for it...Yes, I know there are a lot of things that could be worse, but this is my reality and it's one I never, ever expected to be living.
Nate still can't hear me, so even talking to him doesn't make a difference - I get no response. The only time I get a response is when I make funny faces or give him a bunch of kisses on his neck. We've finally been fitted for hearing aids, so he'll have those soon. But even the thought of hearing aids is overwhelming to me. Take them out every time he goes to sleep or takes a shower/bath. Change the battery every 10 days. And then there's the concern of if they'll even stay on his tiny ears. Oh, and the audiologist said to expect to visit the ENT often to have Nate's already impossible ear canals cleaned out (nobody has been able to even see in his left ear yet!) - it turns out putting plugs (hearing aids) in small canals that tend to accumulate buildup anyway is not a good idea, but that's the choice - ear infections and cleanings OR very limited hearing.
He is almost 8 months old and his activity is still so limited. I feel like I spend the day moving him from one place to another to try to continue to stimulate him - he just gets bored since he can't sit up or move around on his own. And I can't use the items that were good for Cody - they aren't good for Nate's development. So, no jumpers, walkers - anything that spreads his legs apart or promotes an activity that he is not ready to do on his own. So, that limits the options.
And then there are the napping issues. Nate is a champion sleeper at night, but daytime is a different story altogether. He may take a 30 minute nap in the morning if I'm lucky, but then will go the rest of the day without sleeping. So, he is a complete pill the entire afternoon - fussing and crying and only happy if I hold him. At that point in the day, the last thing I want to do is hold him. My mom keeps encouraging me to figure this one out - I didn't realize how much it was really affecting me. Thanks Mom.
Okay, that's my rant for the day. I'm having a tough time.
To my friends who have called or emailed, I'm sorry I've been distant. To my dear sweet husband whose been incredibly loving - I'll find my way back to happy.
Please be patient with me.
-Danielle
Wednesday, August 12, 2009
Mondays - My new day "off"
Since my last post, I have really been thinking about the balance of trying to just appreciate Nate for who he is and making sure I'm taking care of all of his needs. I've had some really sweet time with him this week and am looking for ways to stay in the present.
What I've realized is that therapies, research and making appointments are what really pull me away from this great place with Nate. So, I've decided to try to take a day "off" from DS stuff each week. I think it will be Mondays - those will be my days to just really focus on who Nate is and appreciate his sweet, developing personality. I will not be distracted by therapies, rushing to appointments, reading other blogs, researching, etc. I will simply love on Nate.
One other thing I am going to try is to have one set time to make DS-related phone calls each week. So, I'll just make a list and make all of my appt calls on one day.
I'm excited to try this new approach and hope it will help me to start my week off by remembering that Nathan is a baby, not a syndrome! (I heard that from someone at the conference and thought it was great!)
-Danielle
What I've realized is that therapies, research and making appointments are what really pull me away from this great place with Nate. So, I've decided to try to take a day "off" from DS stuff each week. I think it will be Mondays - those will be my days to just really focus on who Nate is and appreciate his sweet, developing personality. I will not be distracted by therapies, rushing to appointments, reading other blogs, researching, etc. I will simply love on Nate.
One other thing I am going to try is to have one set time to make DS-related phone calls each week. So, I'll just make a list and make all of my appt calls on one day.
I'm excited to try this new approach and hope it will help me to start my week off by remembering that Nathan is a baby, not a syndrome! (I heard that from someone at the conference and thought it was great!)
-Danielle
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