ACD

06Aug 2018

“It’s so Austin…” I heard that sentence a lot the weekend of July 27-29. I inferred it to mean several different things- odd, wacky, unique. The hotel elevator has to use your room key to unlock the button so you can go up a floor, and it had no rhyme or reason if it was going to go up or down… It’s so Austin! The doughnut shop around the corner, Voodoo Doughnuts (brought to all of our attention by Mac Cafferty), where you can buy a cereal topped doughnut or one shaped like a voodoo doll… It’s so Austin! The local zoo that only houses rescue animals and its very offbeat and rustic landscape… It’s so Austin! So it seemed fitting that our odd, wacky, and unique CCDS Family was all congregated together in this town known for the odd, wacky, and unique. This is how our “family reunion” of sorts went down for the Alveys. Continue reading

29Jun 2018

Sonnet walking smiling

Since Sonnet wasn’t diagnosed with GAMT until she was seven-years-old, she is severely affected developmentally in every way. We found that with treatment and therapies she gained new skills quickly. Her therapists are a VERY important part of our team. Continue reading

21Jun 2018

As a mom of a child with a rare condition, particularly of my Ben who has Creatine Transporter Deficiency (CTD), it’s so easy to let your mind wander into topics that make you really sad or scared. That’s been happening to me recently. Continue reading

15Jun 2018

I feel like all us parents of special need kiddos have that one person who is our main go-to.  Who we all wonder why the heck they choose to be involved in our lives but are so extremely happy they stay.  This post is going to be a little different because I’m pretty much just going to shout out to our friend.  But I feel like you guys will relate because I know you guys have this Friend in your life too… Continue reading

11Jun 2018

Summer is the most coveted time of the year around our house… AND IT’S HERE!!! Both boys have birthdays in the summer, the weather is perfect for swimming and being outside all day, shaved ice and late nights playing – it is just great! Continue reading

30May 2018

Good day again readers! I hope everyone has been enjoying the warmer days and (hopefully) sunny weather.  If you caught my last post, I discussed the expectations that my wife and I have for our boys with CTD and how those expectations or goals have changed over time.  As I finished writing that post, it kept coming back to me that the boys aren’t the only ones who we had expectations for that required some level of realignment. Continue reading

23May 2018

Hi everyone out there! I hope everyone is doing great. Just to fill you in on our family, we have 4 kiddos, 1 of them has CTD and Autism. We have had a rough go lately it seems with our son and his language. Our son Spiro has a huge vocabulary I would admit for someone presenting with CTD. We can talk to him. He can answer us. He comments on situations around him. It’s not always correct or sounds right but it’s there and we are happy with where he is at as far as speech goes. Continue reading

14May 2018

My oldest child, Chelsi, my first born, my 18th birthday present, and my graduation gift all bundled into my arms forever changed my life. Ok, Ok! A baby having a baby…there….I said what society said.  For those unaware, Chelsi is the mother of Caiden. We have a dual CTD diagnosis that was discovered in the process of diagnosing Caiden. As Grammy and Grampa-pa, we co-parent Caiden. Continue reading

15Apr 2018

Everyday life with special needs children can be challenging. But one adjusts to the “new normal” and establishes a routine that works at home. When you add traveling to the mix it is a whole ‘nother mix of complications. My daughter thrives on routines, yet plane trips and overnight medical stays are just part of her reality (and mine!) How do we cope with these trips thrown in every few months? Here are several of the things that have helped us to have a more positive outcome. Continue reading

12Apr 2018

If you read my previous post then you know we received our CTD diagnosis at 9 months old.  If you didn’t… well, now you know.  If you’re reading this post, odds are your child also has just gotten a diagnosis, and I know one of your biggest questions is “When will they hit this milestone? How far behind are they gonna be?” Well, I can give you the answer to that when you show me two identical purple snowflakes. Continue reading