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?


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!

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!)

This post is probably more geared toward those of you who have children with DS or are well versed in feeding therapies...


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's where I get totally 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,

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'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.