"Glee" Redeemed

About a month ago I wrote an entry about how I thought Fox's show, Glee, was not sensitive to people with disabilities.  I was offended by some of the things they said about "special ed kids", "mongoloids", as well as insensitive comments about other disabilities.  Well, I'd considered boycotting the show, but for some reason, got sucked in. 

Last night's episode has redeemed the show for me!  I was so surprised to find that what I thought was offensive had now become a show working hard to break through stereotypes and make the viewers aware of the struggles some go through.  The entire Glee club spent the whole week in wheelchairs to try to understand what one member of the group experiences on a daily basis.  The Glee club quickly realized how difficult his life is and experienced the prejudice he lives with.  They then introduced a girl with Down syndrome.  The coach of the cheerleading squad (a very harsh, insensitive, guarded character) was forced to hold open auditions.  After the girl with Ds stumbled through her audition, the "Cheerios" coach tells her she made the squad.  This part made me a little nervous, thinking the coach was going to show her insensitivity again.  I actually watched the rest of the show with a bit of anxiety and anticipation, just expecting to be offended.  Instead, I was pleasantly surprised to watch this cruel cheerleading coach soften as she walked in to visit her older sister who had Down syndrome.  Her facade melted away and she lit up as she sat next to her sister's bed and proceeded to read a story to her.

This show may actually have a chance to raise awareness and change perceptions about Down syndrome and other challenges. 

I stand corrected and humbled.

-Danielle

Update - Nate at 10 months

Hey there! I haven't been writing much lately. I had started using Blogging as a therapy of sorts and think I just got through a really tough patch and then didn't need to write as much. So, now I need to get back to my original purpose of the blog and just keep all of our friends and family up to date!

First of all, we are doing well. We have really turned a corner as a family. We now see that Nate is just another part of our family and we are cherishing him. He has mastered the art of melting our hearts with that full face smile of his and we love it! I can honestly say I don't have sadness over him anymore. Yes, I have times of frustration or just feeling overwhelmed with all that needs to be done for him, but sadness is not part of that. I see that we have a very unique opportunity to see life through a very different perspective than most. I see that our child's special need is not nearly as challenging as so many others out there. Okay, if I'm really honest, I do have moments when I look at other families and wish for a second that I could have the typical life....but, does typical mean great? Has having Nate made us stop and evaluate what life is really all about? Yes, I think it has. And I think, from what I hear, that we will continue to slow down and appreciate the little things in life.

So, on to the update about Nate:

Hearing

We have been using a hearing aid with Nate for a couple of months now.  At first, it seemed very cumbersome, with it giving feedback every time he turned his head or rolled.  But, with the help of the Hannah Anderson "Pilot" hat, we have worked our way up to 6+ hours each day.  They seem to help, but we still know it could be better.  These hearing aids are set at very conservative levels since we still don't know his exact hearing loss.  

We went to the ENT Doctor last week and she was able to finally see in Nate's left ear canal.  She got quite a bit of wax out and then could see to the drum.  She does not think Nate has any fluid in his ears, so we will not be getting tubes at this point.  Now that we know he doesn't need tubes, we are cleared to go in for another sedated hearing test.  This is scheduled for 1pm on Nov 20th.  After that, we should know his true hearing levels and be able to get the aids adjusted accordingly.

Heart

We went in last week for Nate's 2nd echocardiogram.  There is a valve in the heart that is open in utero and is supposed to close at birth.  When we went in at 6 weeks, it hadn't closed, so they asked us to come back.  It still hasn't closed, but it does not appear to be affecting the heart.  Our cardiologist does not feel it is necessary to perform the procedure to close the valve at this time.  We will go back when Nate is 3 and see how it looks then.

Feeding

We're working on this.  We FINALLY had a county speech and feeding therapist come out to the house (after a 2 month wait!) last week.  I just felt at such a loss on how to feed Nate since his tongue just pushes everything out.  She gave me some great exercises and tips, so I feel much more empowered now.

Gross Motor

Nate continues on his slow, steady path.  He is rolling all around, transferring his weight while on his tummy, reaching for toys, holding his bottle (at times), pivoting on his tummy, doing a little bit of prop sitting and holding his head up very well.  Nate has an opposite challenge than most babies with Down syndrome.  Most have very week muscles on their front side (flexors) and stronger on the back (extensors).  So, this means Nate loves to lie on his back and stick his feet in his mouth and roll around.  But, it means it's very challenging for him to sit up straight.  We have started using kinesiology tape, which we tape in a certain position on his back so that if he slouches it gives him a reminder to lengthen his spine and sit up.  This seems to be helping, but I'm imagining we have a few more months before he will be able to sit up on his own.  In the meantime, I'm just enjoying this elongated "baby" time - don't we all always say the baby phase goes too fast with our typical children?  This is my chance to truly appreciate it!

Social

This is the one area Nate is not lacking!  Nate is extremely social.  He has excellent eye contact and always wants to be around others.  He is magnetic!

Okay, I think that sums it up for now!

Thanks for reading!

-Danielle

A Nuzzle says a thousand words

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

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

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

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...



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

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