Photo credit: Disney Photopass
As a mom you always want and expect that, when you have a child, he or she will be perfect, and nothing will go wrong. With my first born that was the case. She was just what a newborn, infant, and toddler should be. With my second one, however, we immediately saw signs after birth that something was off. Our second daughter, Madison, would not take a bottle of any kind or eat. We noticed that her eyes were always moving back and forth, and she was not focusing the way she should be. At 4 months old Madison was diagnosed with Albinism, which means that she lacks pigment in the hair, skin, and eyes. Due to lack of pigment in her eyes, she has low vision.
Photo credit: Disney Photopass
At first my husband and I were shocked — we had no clue what to do — but we soon got her into vision and orientation and mobility therapy, and she started to learn how to use her vision. As her mom, though, I knew something was still off, and there was more than Albinism going on. At almost a year she still would hardly eat, and she was even failure to thrive at one point. She would cry all day long. I can’t explain it, but, as her mother, I just knew there was something else wrong. Soon after she turned one, she was diagnosed with Sensory Processing Disorder. Basically, there are times where she goes into sensory overload, and her brain doesn’t know how to deal with it. We got her into therapy and did things at home to help her sensory system, and we soon learned what to do to help her when she goes into overload. A lot of the things we do actually involve Disney!
We have since had another child with Albinism and Sensory Processing Disorder, and it is a daily battle. Thanks to themed items from movies like Disney’s Cars and Beauty and the Beast, we have found tools that calm our children down and help them with their senses. For instance, Madison loves the movie Cars. When she would refuse to wear shoes because they didn’t feel right to her, we were able to get her to wear Cars shoes–even though they were made for boys! I would say most of our tools for helping our two girls with special needs involve Disney in some aspect, and I am thankful for that resource.
Casey is a 29 year old wife and mother of four girls ages 7 and under. Two of her four children have been diagnosed with Albinism and Sensory Processing Disorder. As a result, her life can be challenging at times, but her family tries to add “Disney attitude” on a daily basis to make the hard times easier.
Casey has gone to Walt Disney World every year since she was a young child and strives to carry out this annual tradition with her own children. But in between the trips, Casey and her family do their best to bring Disney into their daily lives.
Casey,
You story as so touched my heart! As moms we do wnat a healthy child that can thrive in society and not have to struggle with the basic things in life. I like you had my 1st child no issues, my 2nd daughter was born prematurely and had medical issues, we were told that she would have mentally and maybe physical disabilities. My 2nd daughter ( let me call her “R” or NDK #66, is now 11 yrs old and is a great kid and to look at her you would not see anything “off” about her but for to interact w/ others her age you can see the emotional difference, that is why she enjoys playing w/ kids younger than her.
I am sure everyday is a day of much energy, I applaude you for finding resourses that help your childern and making them happy.
Shelly, thank you so much for your wonderful comment! You are right that everyday is full of energy but my daughter is worth it and I would do anything for her.
Casey,
Our son was diagnosed with possible “sensory integration disorder,” which sounds like sensory processing disorder. I’m not sure if he actually had this condition, but if he did, he seems to have “outgrown” it. He does, however, have a severe anxiety disorder.
Strangely, one of our first clues that something was “off” was at our first trip with him to Disneyworld at age 3. We took him on the Haunted Mansion on the first day (fools!!) and he was afraid of dark rides for the rest of the week. We had seen kids get scared on rides before, but usually they’re able to shake it off. It was only a couple of months later when he got the diagnosis. Then the trip to Disney World made more sense.
But Disney has also been instrumental in his “getting brave.” Although he’s still not been on the Haunted Mansion again after another 5 trips, he has ridden all three mountains in the Magic Kingdom. Every trip, he tries another ride. This year, he’s planning on tackling Stitch’s Great Escape and the Enchanted Tiki Room and then he will have ridden every ride at the Magic Kingdom. (After all, he DID ride the Haunted Mansion once). I swell with pride when he’s standing in line for a new ride, covering his ears, and says, “I’m kind of nervous” but doesn’t want to leave. He’s learning how to deal with his anxiety himself. Although he has an anxiety disorder, in my eyes, he’s the bravest person I know, because unlike the rest of us, he has to overcome a major fear almost every day. And his love of Disney parks and movies has been key to his learning to be brave.
SPD and SID are the same thing they professionals just changed names for same reason. Way to go for your son. He is brave and you should be very proud. My daughter has issues with teh dark rides too but she continues to go on them and each time she gets better. Buzz Lightyear overwhelms her senses but if she just sits and watches instead of participating then she does better. I think anxiety might go hand in hand with sensory processing disorder. I see it in my daughter and she was also diagnosed with obsessive compulsive disorder. Our kids are brave and amazing.
Awww~ I love the photos!
Hi Casey,
I love your post! My 8 year old daughter also has sensory processing disorder. We were handling it pretty well until my husband deployed to Iraq last year. She has always loved everything Disney and being a military family, Disney World really has become a second home to us. We are able to forget the stresses of this lifestyle. The Christmas while he was gone, I decided we needed to get away, so I convinced my whole family to pack up and go to Disney World for the holiday. This was the trip that really made me realize we had to get help. She always been able to cope at Disney World, but she couldn’t handle anything. We spent several days in the hotel room because she just wasn’t able to cope with everything going on in her little life. Although it was a hard time, I am thankful that it opened my eyes (and the rest of my family) to get help she needed. After LOTS of therapy, we finally have it under control. My husband returned in October and we just moved in December (my daughter’s 8th move). She has adapted so well. She loves her new school and she is wearing jeans and tennis shoes everyday!! I just can’t believe this is the same child that I was having to drag to the car screaming and crying wearing yoga pants and crocs! I will say that Phineas and Ferb helped us out during many of those trying mornings!
What a precious daughter you have and I love to hear inspirational stories like yours. God Bless!
Awwww, Casey those photos are too cute!