What is a Special Needs Child?
Many times as a parent I am asked what is a special needs child, shouldn’t they have a physical handicap? Many people look at a special needs child as a child that is misbehaved, impulsive, rude, and undisciplined by their parents, but the truth is, there is more to it than that. According to the Merriam-Webster dictionary, the definition of special needs is “any of various difficulties (such as a physical, emotional, behavioral, or learning disability or impairment) that causes an individual to require additional or specialized services or accommodations (such as special education or recreation) students with special needs.”
As a parent of a special needs child who was born 13 weeks early, weighing 1lb 10oz and spending almost six months in the Neonatal Intensive Care Unit, I understand the difficulties that many parents face. My son had a 5% chance of survival at birth, he had one functioning kidney and odds against his survival without multiple disabilities. We had prayer warriors praying worldwide for his recovery and they worked! He was discharged from the NICU after almost six months on round the clock oxygen, 18 doses of different medications per day, two different kinds of breathing treatment per day every 3 hours, tube feedings every three hours, multiple doctor’s appointments during the week, speech, physical, and occupational therapy at home daily, and BPD (bronchopulmonary dysplasia). According to the American Lung Association, bronchopulmonary dysplasia is “a form of chronic lung disease that affects newborns (mostly premature) and infants. It results from damage to the lungs caused by mechanical ventilation (respirator) and long-term use of oxygen. Most infants recover from BPD, but some may have long-term breathing difficulty.”
Today Kaleb has overcome all the health challenges that he was born with and defied all odds. He is healthy, despite having only one kidney and tiny lungs. He gets dehydrated quickly if he is not drinking plenty of fluids, but other than that physically he is doing amazing and catching up with his weight. Since he started VPK (Voluntary pre-kindergarten) it was discovered that he had a learning disability but he was too young to determine what type it was. He has difficulty reading, but besides that, he is very intelligent, creative, artistic, and spirited. He attends the mainstream school with his peers but also takes classes to enhance his learning challenges.
Why is all this relevant? Well, let me share my recent experience visiting Disney World for my son’s birthday weekend celebration. First and foremost, the Disney employees with the exception of one were amazing, they know how to work with special needs children. They entertained my son’s questions and made his experience fun. Now for some guests that was not the case. Our day started with a friend of ours gifting us tickets to The Magic Kingdom for Kaleb’s birthday, we were so touched! We had a great start to our day waiting until we were under the purple umbrella that says Disney World in order to announce to our son that this was his birthday surprise. He enjoyed walking around, riding the tram, monorail, and the steam engine train. We rode several rides in Fantasy Land and he had a great time.
We arrived at the seven dwarf’s ride, now he had seen this ride and knew it was a bit rough, but age appropriate for the little ones. He was very excited despite the 65-minute wait. We chatted with him about the ride and his experience in the park and anything else that we could think of to keep him distracted from the long wait. There was a woman in front of us, dressed in a striped long sleeve dress with fancy sandals. I thought it was a bit dressy for my taste at a theme park, but who am I to judge anyone right? “Do not judge, or you too will be judged” Matthew 7:1. As we waited for her husband and two daughters worked their way through the middle of the line with ice cream and “excuse me’s.” As all little boys do, my son was playing with the interactive diamonds that the park had for the kids to play with amongst other things like jumping, making jokes, and just being a kid. After 30 minutes of waiting in line, the woman came right up to me space in my face (any closer and she would be kissing me!) and said, “my kids have been knocking into me as they get bored on the line and I don’t like it, so please take control of your son and do not have him knock into me as I do not tolerate that. Wow, all he had done was accidentally bump into her once as she was standing there and he was moving around as all kids do. The next 35 minutes I had to hold his hand and keep reminding him of what the woman stated so that he could avoid bumping into her. Thankfully they split our group up and she was not on the same train for the ride and we never saw her again.
As we walked around Liberty Square, there were some photo opportunities, one being the prisoner picture. My son immediately ran to this in the square to get his picture taken there. There was a woman that was walking toward it and she paused with her friend to allow me to take a picture of my son. When I walked around to take the picture, the older gentleman taking the picture of his older daughter who allowed us to get on the platform after my son left, stated, “you know your son cut the line.” I apologized and indicated I was not aware and he walked away shaking his head at us.
Our third incident was when we stopped at Peco’s to eat. We were looking at all the rooms to find a place to sit and eat, we caught sight of one table in a room but the guests had just left and they had left all the trays and trash there. There was a woman hostess standing there and as I approached her with my son and my husband I was about to ask her if she could clear that table for us so that we may sit down and eat. She looked at me with looks that could kill, I said I was only going to ask if she could clear the table and as I started to ask, she walked away from us. We ate our dinner and watched as another employee greeted everyone, waived to guests, and offered her assistance to guests. I thought to myself, I wish I had that cast member earlier. We ate our dinner, but as we collected our belongings, I started to feel like it was just my husband and me taking care of my son and as if we did not have a friend who could ever understand what we were going through with a special needs child. I felt alone for the first time in our 9 year journey and wondered what would become of our lives and our son’s life.
The fourth incident was at the Emporium store where a Disney Cast member waited on us as my son took three little toys that he selected for his birthday gift one from us, one from his grandma, and one from his savings, to purchase. We had purchased two other items for ourselves and a cast member came to assist the cashier with placing the items in the bag to help out, and my son requested politely if he could have his toys in a separate bag. The cast member stated that she was never that spoiled to get three items for her birthday when she was growing up. Kaleb, my son, replied to her that this was his birthday gifts from his mom and dad and grandma. The woman quickly changed her tune as she heard this explanation from this spirited child.
I did get many compliments on my Disney Dalmatians shirt that is many years old! People kept asking where did I get that from!
Time to Go Home A Good Night was Had By All or Was It?
Lastly, it is time to get on the tram car to get to the parking lot. As we patiently waited on the long lines, the 4th tram car came by. Kaleb immediately ran to the first car, we were in-between lanes and maybe he should have run to the 2nd tram door, but he ran to the first one ( which has two rows of seating anyway). As we went in a woman behind us indicated that this was her car and we should have been in the second car not the first one, but the tram personnel spoke over the loudspeaker to quickly take your seat. We took our seat and as she came in with her young daughter, husband, and grandbaby and stroller (which took up about 4 seats 2 in front and two behind due to the stroller size) she rammed the stroller into my son’s leg and he said “ow that hurt” there was no apology, excuse me, and she gave us a look of anger. I tried to catch her eyes, but she would not catch my eye. Of course, Kaleb being the friendly happy boy that he is was singing the song from the Carousel of Progress, “There’s a great, big, beautiful tomorrow
shining at the end of every day.” This seemed to annoy her more. As other guests commented on his happy go lucky behavior especially since they heard this woman complain that we were in her car that seated 5 people per row and with her family, my son and myself there were 6 total because she sat in the middles blocking anyone else from occupying the other 4 seats due to the stroller the way she positioned it. My husband sat in the next tram car so as not to cause any more frustration. We were in the last parking lot so we had a few stops. On the second to last stop, the tram car stopped and as the family exited, my son said, “have a good night” as he did not receive a response, he repeated the sentence until the daughter looked at him and just nodded, but the grandmother never acknowledged him.
You may ask again, what is the point of sharing these experiences. First of all to make those folks that do not have a special needs child aware that although someone may not look like they have a physical disability, that they may not have another type of disability that is not known to you. The child may have a learning disability, attention deficit disorder, hyperactivity, dyslexia, or any other disabilities that are sometimes chalked up to bad behavior. Just remember that a Learning Disability is not a mental illness, it stems from a neurologically-based problem which in this instance for Kaleb being born 13 weeks premature.
Thankfully the Cast Members at Disney on all the rides and places we went to received my son with open arms, high fives’ and have a magical day! The one cast member at Peco’s that was rude to us, well, I can say maybe she was having a bad day, and we will chalk it up to that. Disney is still truly a magical place where a child no matter what age, what disability physical, or learning they have, can still be a kid and parents can rest assured that their child will have fun.