Family Life Parenting

When your child with a disability becomes a (almost) teenager

By on November 9, 2016

This morning I’m celebrating! My son, my oldest, Chance, he’s turning 12! I cannot believe it! First off, how in the world am I old enough to have a pre-teen! Second, this brings an annual bunch of mixed feelings due to his Angelman Syndrome.

What is Angelman Syndrome?

angelman syndrome

Turning 12

Chance was born with Angelman Syndrome, a genetic disorder caused by a deletion on his 15th chromosome. It has caused major developmental delay including not being able to walk with out assistance and being completely non verbal. He also has a sleep disorder and epilepsy due to his Angelman. His Journey started out with excitement (you can read my guest post of his birth story here). Ever since the start of his life adventure he hasn’t stopped defying expectations and paving his own path.

My awesome son has always loved having a good time. That seems to be his highest priority. He loves Techno music, beatboxing on the ipad, and playing in the pool all day if he could. Sometimes I honestly forget my kid is disabled. Even though I spend my days working on alternative communication, helping him with all his self-care, advocating with the school and keeping track of his medical needs. It’s become our normal, and I’m ‘mostly’ no longer phased by it.

Angelman Syndrome

Chance turning 12!

Our Complicated life

Even something as simple as going to the playground can be complicated. We have to check to make sure there is no gravel or wood chips so the wheelchair can navigate, or he can walk safely with help, can’t be too hot that day or it will trigger seizures, and it can’t be too busy or he will get anxious and manic. In this regard we are so lucky to have Morgan’s Wonderland , which is an inclusive playground/theme park for all abilities here in San Antonio! It’s actually his favorite place to go, so that is where we will be partying for his birthday!

But of course as he gets older, there is a very small part of me that feels sad he’s not able to do typical 12yr old boy stuff. He cannot go hang out with his friends with out a caregiver, or play sports, or read books, and play video games. I’m thankful its a small list, but aware that list will grow as the years go on. He will not get married, or have kids, he may or may not get a job, there is a lot of potential still despite his challenges.

As we look to the future, I will never stop fighting for him and pushing him to reach his full potential. I see only fantastic things ahead for him with a life full of the adventures he loves! I cannot wait to see how he grows and effects the world around him.

His lessons for the world

If he’s taught me and the world anything, it’s that nothing has to go as planned, we create our own joy and our own path in life. We never have to follow what others ‘think’ we should do. Chance never gives up, even if his body seems to fight against him, he stays determined and finds a way to do what he wants. He’s taught me to spread happiness, love and hugs everywhere we go and everyone is better off when we are smiling through life.

Happy Birthday Chance, thank you for sharing you joy with me and the world!

TAGS
RELATED POSTS

Leave a Reply

Disclosure
This blog may contain affiliate links. Which means if you click on some of the links in posts I may receive commision from a sale. This helps to support my family and keep the blog running. Thanks!
Ebates Coupons and Cash Back
Instagram
  • Watching Grateful Dead docu series on @amazonprime with my little weirdos hoping to pass on the hippie lifestyle (or at least appreciate the music 😜) to my munchkins and embrace the weirdness and live out loud - #nontraditional  #freethinkers  #expressyourself  #livewild #livefree #hippiemom #hippiegrandparents #momlife #momblogger #momof3 #momblog #summerkids #summercraziness
  • This is my life right now .... I feel so scattered and nothing is being done 100% - but I'm not stressed ... my 12yr old is recovering well from his illness, my girls are behaving (sorta) well this week and I'm about to runaway with the hubby for 2 days to see his favorite soccer team play in Houston! The kids will be in good hands and I think 40hrs with out them will help us finish out the last half of summer break! I'm just going to breathe and get things done whenever I can! #summer2017 #summerkids #summercraziness #momlife #momblog #momblogger #momof3
  • As a special needs mom this is our reality sometimes... my 12yr old is sick but he can't tell me what's wrong... I'm seeing seizures but now wondering is the seizures causing sickness or vice versa ... will we see the hospital tonight or will we get some rest either way I hate this for my boy ... hoping for a healthier tomorrow #truelife #momlife #specialneeds #angelmansyndrome #specialneedsmom #specialneedskids #seizuressuck
  • As I say 'only 3 books each this week!' They pile up and up... I won't stop them because I love books as much as they do! And now I need a shopping cart to get ours to the car! #summerkids #summertime #summer2017 #summerreading #librarytime #momlife #momof3 #momblog #mommyhood #mommoments #bookstagram #booklovers #momlife #momblogger #mommyblogger
  • Ahhh my downstairs is clean ... my girls are playing barbies and my boy and me are watching my favorite tv show The West Wing!  I've decided to scale back on how much I work ... just for the summer... I've been feeling more anxious about not working more on my blogs... as much as I enjoy the work I want to focus on my babies more... so if I can't work on it at night it will just have to wait :) my happy chaos life is too much fun to ignore :) time to make more memories!! Hopefully this change in focus will bring me more content and ideas for projects going forward! I'm blessed to financially be able to do this as I know not everyone is as priveleged.  #wahm #sahmlife #summer2017 #summertime #summerkids #momblogger #momlife #momof3 #momblog #mommyhood #mommoments
  • This seems to be our summer theme! So much cuddling! Part of me wants to be productive the other part knows there will be plenty of time when they are all back in school and I do love my kid cuddles more than anything ! Happy Monday y'all! #parentingblog #parentingishard #parenting #momblog #momlife #momblogger #summerkids #summer2017 #summertime

Follow Me!

Subscribe to Blog via Email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 5 other subscribers

%d bloggers like this: