Special Needs Advocate

Introducing the GOLDEN ADVOCATE. The Golden Advocate Award is given to bloggers who have gone above and beyond to educate and advocate for people who have special needs. It was created in honor of a little girl named Sophia who has Down syndrome, but it is not limited to the Ds community as all special needs count.

The recipient may be a self advocate or a loved one, caregiver, therapist, teacher, community member, etc. to a person with special needs.The recipient of this award has demonstrated courage, strength, and wisdom, and has used their blog to show the world how amazing people with special needs truly are. Recipients of this award do not shy away from speaking out against ignorance, cruelty, or injustices related to people with special needs. They can sometimes be found making phone calls to elected officials, signing petitions, attending rallies, and blogging about issues that are important to our community.

On most days they educate by sharing their everyday experiences with us, allowing us to see how people with special needs are more alike than different. They wear their advocacy hat well and the world is a more beautiful, diverse, and inclusive place because they are in it.

To accept this award: Simply accept it with the knowledge that your work is appreciated. Feel free to post it on your blog, or not. It's up to you with no strings attached. To nominate a blogger for this award or to pass it on if you have received it: Use the image, guidelines, and description listed here. Briefly summarize why the blogger deserves this award, post a link to their blog, and notify them that they have won. Link back to this post so that we can track how far it travels. Please limit your nominations to just 1 or 2 deserving bloggers.

**

I have been given this award from Beth at Hope for Elijah. Beth is currently 36 weeks pregnant with a little boy, Elijah, who has Down syndrome as well as an AV canal defect - just like Dylan. Beth notified me of this award a few days ago and I must say, I feel honored! Just hearing that Dylan's story is, in some small way helping someone else, means the world to me. I began this blog almost exactly one year ago. My purpose in starting it was to keep family and friends updated on Dylan's day to day activities as well as his upcoming heart surgery. I had NO idea that there was such an amazing group of people out there who are traveling along this same path. I really, truly appreciate all of you.

I would like to nominate Lisa from Finnian's Journey for this award. As soon as I had read the description of the award, Lisa and Finnian came to mind.

Lisa truly does hold a special place in my heart as she and I have been traveling this same journey from the very beginning. Actually, I have known her for about 3 years when we "met" on Pregnancy.org. My daughter Cassidy, and her daughter Lilah, will be turning 3 at the beginning of October. Then, we were pregnant again at the same time - this time with Dylan and Finn. I had Dylan on June 28 and a week or so later, I heard about Lisa's baby, Finn. I immediately contacted her and explained my story...and we have been friends ever since.

Thank you, Lisa, for sharing your life with us. I think that your blog is very honest and real...and I do appreciate that. Thinking back to your posts from the very beginning, I can't help but be amazed at how far you've come. At how far we both have come. Thank you again, my friend.

Our little barking seal...

...has croup.

The Swallow Study...

...wasn't exactly what I had in mind.

Prior to this appointment, our Early Intervention Service Coordinator had told me what to expect, therefore I had envisioned Dylan sitting up in a high chair, happy as can be, being offered various foods and drinks all the while being x-rayed (is that even a word?) to see whether or not he was aspirating. What I did not expect, was the x-ray machine to basically pin him down on his back while a nurse impatiently instructed me to "hold his arms down tightly" to keep them from flailing about all while she squirts barium down his throat from a bottle. And then again, same deal, with water. "But he's going to choke on that! This is why we're here...because he chokes on thin liq...". No matter. They had to do it anyway. Sheesh. In the midst of it all, I couldn't help but wonder, 'Why why why am I doing this to him?' Ugh. Poor ol' D.

As it turns out, the results from the study came back just fine. It does not appear that he is aspirating, which is great news. I was able to speak with the speech/language pathologist for a bit after the test and she agreed that most likely Dylan's difficulties with feeding and swallowing are developmental. That sealed the deal for me - no scopes. I canceled the procedure as I simply can't justify it at this time. It just does not seem worth the risk.

What I do need to do, is continue being patient with Dylan and his feedings. I admit that I did have a moment last night where I felt quite sad and defeated with the whole sippy cup debacle. I was sitting across from Dylan and watched him, as I do every single time I offer him the sippy, bite it and then throw it on the floor. You see, I think part of the urgency I feel at this point, is that I am growing tired of nursing. And not only that, but because he thinks the sippy cup is something to bite on, he has transferred that habit to biting me as well.

Ah well.

Onward we go. Doing the best that we can do. Day by day.

Speech...and stuff.

Dylan had his One Year Evaluation with our Early Intervention Team yesterday. He did very well and has made some really nice progress. Actually, he has met all but one of his goals that we had set for him back in January or February orrr whenever our last eval was. It is probably no big surprise that the goal he did not meet was his feeding goal. I think it went something like this: "Dylan will be completely weaned off breastfeeding and will be eating solid food.". Umm...not quite. Eh, we'll just keep on keeping on with that one, right? But really, I could not have been more pleased with how it all went. The Team respected my wishes to focus on Dylan's progress rather than be given a "score" at the end of it all correlating to the age at which he is working at. And again, it's not that I am in denial here (although I do admit he is quite the superstar, ha!), it's just that I know myself. And I know that I would not have done as well if I had to hear that he is really functioning as a "x" month old. We do better comparing Dylan with Dylan. That's it.

So, I decided to ask our service coordinator if it would be possible for us to start speech services in the next few months. They told me the same thing that they've been telling me all along - that I am "already working on speech with Dylan every day just by talking with him and playing with him" and that even though "he receives OT and PT, they are also actually incorporating speech with him with what they are already doing". While I do understand this, I am not 100% convinced. I mean, I would kinda sorta prefer someone who specializes in speech to be working with my son. But then again, what do I know? In any case, they said that they would put in for a consult. That way, the speech therapist will come out and will evaluate whether or not it is appropriate for Dylan to begin receiving ST services. I'll be curious to see what happens...

Be honest with me here - am I out of line to suggest starting speech at this age? Will it be "worth it"? I mean, if nothing else, it won't hurt, right? It's just that speech is a big concern of mine and I know that many kiddos with Ds struggle with it. I just want so badly to give Dylan every opportunity that I can. I do not want to look back in a few years and wish that I had done something sooner, you know? But then again, I also do not want to bombard Dylan with a zillion therapies...bahhh.

Shoot. Again with the manual. Where did you say it was??

Having Issues

That would be me...the one with the issues.

So, now that I've had some time to process all of the information from the Feeding Team/Swallowing Center, I'm not totally sold on the idea of the lots-o-oscopies. The more I have thought about it, the more I am wondering if maybe this is one of those things that may require just a bit more time and perseverance? A bit more patience on my part? Maybe I haven't been giving Dylan enough opportunities to learn how to chew and to learn how to swallow? Maybe it's me with the problems, not him. Bah. Who knows.

I just got off the telephone with Dylan's pediatrician to ask her thoughts on it all. Naturally, wouldn't you know that Cassidy decided that the minute I called her, would be the perfect time to scream, yell and cry? The perfect time to demand "More puffs!" over and over again? And while I must admit, I did attempt that whole silent mean face thing in a desperate attempt to scare her into being quiet, it didn't work. I had to resort to closing myself in the bathroom with Dylan in my arms while Cass continued to pound on the door yelling, "Mommy! Get out here!". Ah, nice. So, what I think the pediatrician was trying to tell me was to go ahead with the swallow study on Friday (even though we are still not quite catching on to the whole sippy cup thing...ahem...), see what the results are from that and go from there. If they still suggest we continue on with the scopes, then I suppose that's what we'll do. They are scheduled for Monday, so we shall see. While his pediatrician does recommend the scopes, she also understands my hesitancy. I guess I just don't know if the benefits outweigh the risks here...and how, may I ask, am I to know for sure without actually doing it?

Good grief. Where in the world is my parenting manual? Because today, my friends, is one of those days that I desperately need it.

Because of Dylan...

...we have been incredibly fortunate. In oh so many ways.

One of them being that we've connected with the most wonderful people. Parents whom we may have never met if it weren't for our common bond - Down syndrome.

We have become good friends with Dylan's buddy Aaron.


With his great pal Josh.

And with Kayden, from The Kauff Krew, who was in town visiting, all the way from Texas!
I think Dylan was especially excited about seeing her in person!

Also because of Dylan...

I have recently learned more about The Parents' First Call Program through Boston Children's Hospital. This group consists of 40 trained parent volunteers who reach out to families who have, either prenatally or postnatally, received an unexpected diagnosis of Down syndrome. I will be attending the training session in Septemeber and will hopefully be selected to the program. I am really looking forward to reaching out to others, just as people have reached out to me.

Thank you Dylan, for being you. My life is richer, my heart fuller.

All because of you.

He is growing up...

...and is simply...

...the best little guy in the world.

With the guidance of his loving big sister.

Lots-o-oscopies

Remember my post about The Feeding Team? Well, we had that appointment today and are now scheduled for lots-o-oscopies. Also, I should clarify, as the appointment carried on, I learned that it wasn't so much a "Feeding Team" but rather more of a "Pediatric Airway/Swallowing/Voice Center" which really, when you think about it, sounds way more impressive than the Feeding Team anyway...

Sooo...

We met with a GI doctor first. Now, this is a different GI doctor than who we usually see, so I had to give him Dylan's whole reflux history. After hearing me talk (err complain) about the 4 different medications that we've tried thus far, he believes that going back to Prevacid is the way to go. He will try to work with our insurance company to get them to pay for part of the cost, as it's quite pricey. I am willing to try this again, as looking back, it seems to have been the most effective. (Read: At least with Prevacid I didn't get spit-up on over 20 times a day. Seriously.).

Next was the Pulmonologist, then the ENT doctor, and lastly the Speech Pathologist.

After meeting with each doctor and discussing the main concerns I have with Dylan, namely his difficulties with swallowing thin liquids (and everything that has been going on with that), in addition to the reflux, it was recommended that we have a swallow study done. While I am all for this idea, I must admit that we do have a small problem: that being the fact that Dylan has still not had much success with drinking from a sippy cup...or from anything for that matter. We were instructed to mix half applesauce/half water in a sippy cup (or half formula/half YoBaby), take out the valve, and just keep trying and trying and trying. And we have less than two weeks for Dylan to get the hang of it. Hm...

It was also recommended that Dylan heads back to Boston for a "surgical procedure". Namely, an endoscopy (for his stomach and digestive system), a flexible bronchoscopy and a rigid bronchoscopy (for his throat, airway and lungs). He will need to fast and will be put under general anesthesia for this procedure.

Ugh. I have mixed emotions about this, I think. On one hand, I feel quite positive that we are moving forward. I really am. Maybe they will find a problem and will be able to fix it. Yet, on the other hand, there is certainly a large possibility that there is nothing at all amiss with my little guy...and that I will have put him through all of this for nothing. Maybe I should "wait and see". And hope that he grows out of it.

But how do you choose?

Gosh. Am I missing something? I just wish so badly that I had this super-strong Mother's Instinct or Intuition...or whatever it's called. That way I would know for sure that I'm doing the right thing here.

A Week

So...we decided a change of scenery, a dose of Cape Cod, for the week would do us all some good. And wouldn't you know, the sun actually decided to shine on us for a bit?

And the scenery...it's not too shabby, eh?

Dylan quite enjoyed himself, I would say.

And Cassidy discovered not only the delicious-ness of Chocolate Mousse Ice cream with jimmies and M&Ms, but also the joy of being allowed to eat three Popsicles for lunch...because we are on vacation after all.

Dylan replaced his old favorite skill of clapping, with that of waving.

Ah, it was a wonderful week filled with treasured memories. Great food, frosty beverages. Helpful hands. Trips to The Aquarium, The Museum, the playground. Laughter and tears.


And sand...lots and lots of sand.

Dylan's Appointment

The Feeding Team.

For some reason, whenever I say it aloud, it reminds me of The Swat Team or something equally serious, like The CIA or something. Orrr, maybe my brain is just soggy from all of this rain and I am not capable of forming normal thoughts...

Anyway, moving on.

Two days ago we had Dylan's 12 month appointment with our semi-new pediatrician. This is the first time we've met her and I must say, I am quite impressed! She specializes in kiddos with developmental delays and truly knew her Down syndrome stuff!

I was able to explain some of our recent struggles - at length too, because Cassidy was not...errr... shall we say, "invited" to this particular appointment. I talked specifically about Dylan's reflux (did I mention that we are now on medicine #4 with no improvement?) as well as how I've been encouraged by our OT to start using Thick-It in his fluids to encourage better management (AKA - Dylan can't swallow thin liquids without gagging and choking).

The Pediatrician listened to my concerns, checked Mr. Dylan over and recommended that we see "The Feeding Team" down in Boston. She thinks, although is not absolutely certain, that Dylan may have a submucous cleft palate, thus the swallowing issues.

This Feeding Team consists of a Pulmonologist, a GI Specialist, an ENT as well as a Social Worker and a Speech and Language Pathologist. When "The Team" called me with the appointment information, they told me to plan for "at the very least - 4 hours"! Daaang!

Honestly, I am quite curious about this whole "Feeding Team" thing. I must say, I am also pretty relieved that Dylan will finally be getting such a thorough exam of this nature. I mean, who knows. Maybe there is nothing at all going on and we just have to learn to deal with swallowing and spit-up issues. But on the other hand, maybe something is going on and we can go from there.

His pediatrician also called me today with the results from Dylan's blood draw. She said that his TSH thyroid results came back slightly elevated. She said that this is pretty typical for kiddos with Down syndrome and informed me that there is nothing really to do at this point. He will be tested again at ages 1.5, 2, and 3.

SO! Whew, that's alot of medical stuff I know, but thought it may be of some interest. I'll be sure to write about "The Feeding Team" (why yes, yes I do like writing "The Feeding Team"!) after our appointment in a couple of weeks.

Moms Who Blog

A few weeks ago I was contacted by a woman, Jessica, who writes stories for a website called, Moms Who Blog. She asked me if I would be interested in talking with her about Dylan and more specifically the reasons why I started my blog. I said absolutely! The story was just published this morning.

Head on over and check it out, if you'd like. : )