Change Can Be Good

There are several changes going on in our household. First of all, my husband received a job offer last week. He GLADLY accepted it. The old saying, “When God closes a door, he opens a window” is so true. However, it’s often difficult to find comfort in that statement when so much is unknown. Three months ago, I wasn’t sure what God was up to and I was struggling with trying to understand WHY? I get it now. My husband was hand-picked for this job out of several applicants and I’m proud of him. It’s at a BIGGER and much better company. We still had our benefits during his layoff, but I was constantly stressing about what we would do once they ended? Now, we are able to keep our insurance benefits without having to worry about when they will cease. And my husband will still have his annuity and pension that he’s had for the past 5 years. This is all very good news and I’m so incredibly thankful to God for this unexpected blessing. He ALWAYS has a better plan!

One of my close friends from Mommy and Me asked me if I would be interested in watching her PRECIOUS 8 month old daughter, Miss T, during the week. I really had to think about it, as our schedule is already crazy. Miss T’s mom even set up her therapies to coincide with Austin’s at the same location. The more I thought about it, the more excited I was! I know I've mentioned this a time or ten, but Austin has severe separation anxiety. However, he seems to do better in settings with other children. I think having Miss T with us during the week will help a lot. Not to mention, she’s such a sweet baby and such an inspiration. She’s a fighter! After being sick for so long, she had heart surgery in May and is like a completely different baby. She now has a lot of energy and that’s exciting. I’m also looking forward to working with Trinity and watching her grow and thrive. Although I haven’t experienced heart surgery (yet), I can say that I have several tricks up my sleeve that can help Trinity grow and develop to the best of her potential. I wouldn’t have been able to say that a year ago ;-) I know we will have fun with Miss T! And it will also be nice because Austin will learn to share and my very favorite rule, “Ladies First.”

Here’s a fun early childhood education fact:

75% of a child’s brain growth occurs between birth and age 6! These early years are SO important.

I had to cancel 2 of Austin’s therapies yesterday because I had to go to the doctor. Last weekend, my body suddenly decided to break out into hives. And I don’t mean a few hives. Oh no. I was covered in hives from my neck to my feet. I have no known food allergies. I am allergic to a few antibiotics, but I haven’t been on any recently. I took Benadryl and most of them went away. Unfortunately, they decided to come back with a vengeance the next night…it was even worse- this time they were on my face. Despite taking Benadryl, using Hydrocortisone cream and taking an Oatmeal bath…the hives are still present. Apparently I had been running a fever, but wasn’t aware of it until my temperature was taken at the Allergy Doctor’s office. She thinks it’s probably viral, but can’t be sure? She told me to take Alegra, which unlike Benadryl, doesn’t have the groggy side effect. I was hoping she’d give me one of those shots they give you for an allergic reaction or put me in quarantine…ANYTHING to make it go away! But no such luck. She said they cannot perform allergy testing while I’m covered in hives, but will do so when I come back in 5 weeks. I forgot to ask her what I should do if the Alegra DOESN’T work? So far, I’m still itchy and covered in hives. I cannot recall ever breaking out into hives or having this type of allergic reaction? I did break out into hives as a baby due to an allergic reaction from an antibiotic…but of course, I have no memory of it. Surely this isn’t normal…I mean I can’t go around with hives all over my body, right? It’s uncomfortable and provokes anxiety because I’m constantly scratching my skin.

Anyway, enough about my unknown allergic reaction/hives. . .

Here’s a video of Austin dancing to “The Cupid Shuffle.” Yes, my son likes to dance to rap music. Does that make me a bad mom? I hope not. I mean, we only jam out to the edited versions…


Happy Thursday!

Neglect

If this blog were a child, it would’ve been taken away from me weeks ago. I apologize for the neglect. There are so many things that I want to update about, yet I don’t have enough time to fill you in on everything.
I’m currently working on an article for The Down Syndrome Guild of Dallas. I wish I could share with you what it’s about, but I’d rather it be a surprise. I’ll elaborate more on that subject soon.

Austin is growing like crazy and doing so many new things. We are completely booked with therapies during the week. I’m proud to announce that he’s graduated from Food Therapy. Shortly after I wrote the previous post, Austin decided to be stubborn and not eat anything. That’s right, another food strike. I do not consider myself a superstitious person. I happen to believe that God is in control, not some silly way of thinking. However, I told myself I wouldn’t brag about eating progress because the last time I did…well, Austin stopped eating. So, let’s just say he’s finished with food therapy because he was ready! In other words, all is well in the eating department.

We had the pleasure of visiting Morgan’s Wonderland last week. Of all places, it’s located in San Antonio, Texas. Morgan’s Wonderland is the first park of its kind specifically designed for individuals with special needs. Did I mention it’s the only park of its kind in THE ENTIRE WORLD?! I had heard fabulous things about Morgan’s Wonderland, but nothing could have prepared me for how amazing it truly was. It exceeded ALL of my expectations.

I need to update more often. I started this blog for 2 reasons:

1) To document Austin’s life and our beautiful journey.

2) TO ADVOCATE AND EDUCATE!

I’m sure a lot of you have heard about the not so nice reference to Down syndrome in GQ magazine. This is the exact reason we (as parents) must continue to advocate and put to rest ALL of the misconceptions about Down syndrome. Individuals with Down syndrome are alive and well. They aren’t “suffering” from Down syndrome. They aren’t just existing, but living. For so long, little was known as far as what individuals with Down syndrome were capable of. Welcome to 2011, people! Individuals with Down syndrome are driving, working, hanging out with friends, going to the movies, texting friends, emailing friends, updating their status on facebook, getting married and living on their own…just to name a few.

I’m often saddened when a stranger learns that Austin has Down syndrome and then asks the all too common question: Did you find out before he was born? Or After?

It’s okay to be curious and I welcome all questions. This particular question always stings a little because you know what’s being implied. Certainly you didn’t know before he was born because wouldn’t you have terminated? My situation is slightly different because we didn’t exactly know FOR SURE if Austin was going to have Down syndrome or not? I had a prenatal blood test and it came back as “high risk” for Down syndrome. I was given the choice (and pressured) to have an amniocentesis by the specialist I was referred to. I was 17 weeks pregnant when I first saw the specialist. When I returned at 22 weeks, he was still strongly suggesting an amniocentesis so we could go over the “options.” I refused because the results wouldn’t change the outcome. I knew I would continue my pregnancy, regardless. And yes, by options…he was “politely” referring to termination. I don’t have negative feelings toward this doctor; he was simply doing his job. 90% + of all prenatal diagnoses of Down syndrome are terminated. I guess he thought I would go with what the majority of women do when they are faced with this decision. I realize a lot of women out there do choose an amniocentesis because they want to know and be prepared. Unfortunately, there aren’t many of us whom decide to continue our pregnancy. This is a reminder that we must educate others. I think most women terminate because they’re scared. The unknown is scary. I think we can all attest to that.

I can’t imagine my life without Austin. I’m not heroic for continuing my pregnancy, even though I knew there was a small chance my child might be born with an extra copy of the 21st chromosome…which just happened to break off and attach itself to the 22nd chromosome.. It bothers me when people tell me, “I don’t know if I could have continued my pregnancy. You’re so (insert uplifting adjective here). I realize intentions are good… but I feel that if more women were educated on what Down syndrome is (and IS NOT!), it might not be so “out of the norm” to continue a pregnancy when you know your child will have an extra copy of the 21st chromosome. I don’t care what situation it is, when TERMINATION is the “normal answer” to a diagnosis- something is terribly wrong. Someone is truly misinformed.

I'm so thankful  to be considered "out of the norm." :)

We Have A Guest Blogger...Guess Who?

Before I begin, I have to share this picture from a Mommy and Me get together a few weekends ago. These women and babies are so incredibly special to me. I'm so grateful for their friendship!  Not to mention, we have the cutest kiddos ever! :)

Well, I have a guest blogger and it's none other than...Austin's Daddy. I was feeling a little down upon receiving the results of Austin’s Occupational Therapy evaluation in the mail. I try to remain positive, I really do. But when negativity is put in front of me, it almost consumes me. In turn, I feel foolish for ever being “positive” in the first place. I know this evaluation was done by someone who met Austin that very day and has only spent an hour with him. I know I’m that stereotypical overly sensitive mom. However, I feel the overly negative wording COULD be changed. I’m not delusional, I know my son is delayed. And I expected delays. For now, I’m going to focus on what he IS doing. He does a lot of things well. He amazes me on a daily basis. I could go on and on…I just wish the therapists would take some time to recognize some of the things he does well, rather than putting most of their emphasis on the struggles. Don’t get me wrong, I want them to address what he struggles with. I just wish they’d remember that he has a family whom love and adore him. “Poor” and “Below Average” do not come to mind when we think of Austin.

Now, here’s a blog post from Austin’s Super Dad. Please note: I did not change any of the wording/spelling/grammar. (I kept my urge to edit everything in check)

As written by Austin's "DaDa"...

Hey everyone, its an update from daddy! It has been quite an interesting last three months as most of you have heard by now. The upside to being home a lot has been how close Austin and I have gotten. Here lately, lil’ boy has been exploring boundaries. You know, throwing fits for no reason, crying randomly, and being a lil’ stinker at meal time. It really is just part of growing up though. For him as a child and us as parents.



Today we received a letter from Our Children’s House of Baylor. It was the results of Austin’s Occupational therapy evaluation. Some of the words they use to score it aren’t exactly inspiring. However, as his daddy, I just have to look at it in a manor that can be beneficial. A) This evaluation by no means defines who Austin is. A piece of paper could never be beautiful enough to define him. B) The use of words like ‘poor’ or whatever really don’t mean a lot. As I’ve said before, my job is to help Austin reach HIS potential. Whether or not he is inline with some scale of measurement couldn’t mean less to me. C) I look at this as nothing more than a starting line anyway. Not the finish line. Austin has responded so well to private therapy so far that my faith in the therapists is rock solid. The X factor in all of this, by the way, is that Austin has two hard headed parents…= he will do things when he’s damn good and ready.


For anyone who has met Austin, you know how special he is. He means everything to us. I cried once for the fact that he has down syndrome and that was the night we received the test results that confirmed it. However, I came a long way really quickly. I just cant see anything wrong with Austin. I even have trouble telling people that he has down syndrome sometimes ONLY because I cant stand the pity. Do love Austin because you just cant help it. Do work on your patience with him, as you should with all children. Do enjoy your time with him because, well, you just cant help that either. But don’t pity him. He’s not helpless. He’s so far from it in fact. He is actually a handful now that he’s mobile. He is very smart. You can see it in his eyes as he studies things, and as he works out problems. I’m beginning to ramble though, so I’ll try to keep some closing thought as short as possible. Sometimes we should just remember that as parents, down syndrome or not, raising a child is going to be such a challenge. But we’re also so incredibly lucky and privileged to be their parents. The joy they bring to our lives is beyond words. Hard and trying times are inevitable. But so is profound joy. Worry less about the hard times, because worry never heals. Just enjoy the angel(s). Cherish their little hugs and kisses. They’re the best.