Bubble Burst

Bubble Burst

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Boy or girl… What do you want? What are you having? Are you going to find out? Aren’t you excited! How far along? Do you eat seafood?  … These are classic things we frequently hear as parents expecting a new bundle of joy. Omgoodness, pregnancy is such a delightful time filled with hopes, dreams, and morning sickness, lol!  Here you are carefully carrying your child to term… cautiously watching what you’re eating… reading every book… photographing the growing belly bump! This perfect tiny life is yours. This little one will grow up one day and you are responsible. They are your precious gift and you will protect them no matter what.1910221_521136381577_24_n

The day comes and a miracle arrives, but then something shifts. Perhaps you sense something immediately, perhaps it is not until the child has hit 2 years old you feel some differences, possibly it’s the age of 5 and there is a traumatic event that alters every hope and dream you held so dear.  What happens when it’s discovered your beautiful and perfect blessing will have a disability in some capacity? A disability is a physical or mental condition that limits a person’s movements, senses, or activities.  This is a limitation. There is suddenly an invisible line drawn that you cannot remove. You did everything right and something still went wrong. What happens then?1927689_521136680977_1017_n

For myself, I can strongly say I went through a wide range of emotions. I felt so guilty when I found out that the playful, hulk-like, arm motions Christian was making when he was 2 years old were actually seizures. I was guilt ridden and depressed he had been seizing for months and I was laughing because I thought he was mimicking the Hulk movie we had seen. I was his mother. I was his protector. I was sitting here watching him and not seeing a thing. I did not understand how God could let this happen. Now, it wasn’t until about six months later I found out that the reason he stopped singing the alphabet to me or pointing to his extremities was because he always had autism. Now, the guilt swept over me again. He was my first born.

‘They’ said be patient with him.

‘They’ said he will learn at his own pace.

‘They’ said not to rush him just to love him.

What ‘they’ didn’t say was what to do when that isn’t enough.

My sweet boy was diagnosed with two lifelong disabilities that he didn’t choose and that I could not control. Oh how I would switch spots in a heartbeat to see him not struggle. The grief I felt as I went to appointment after appointment informing me of the limitations my son would face throughout his life. Grief when I realized that he may never heal fully or go a day without medication. We would live in a revolving door of doctors’ appointments, therapy visits, medication checks… the list goes on. The pains I felt when my son began to smack his lips, eyes roll back and arms start to spasm. This is from a mother’s perspective.

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Now, this is just a glimpse of how I see my son.  But about four years ago I had to step back and consider how do my other children feel?  I am blessed with four more beautiful children. They were born healthy and remain disability free and for that I am grateful. Physically they do not have any ailments requiring reoccurring weekly appointments or daily medications.  Then I looked through an old photo album and started looking into the eyes of each child. My heart began to ache deeply. For the first time I really saw pain behind the pictures. This was not the pain of Christian. This pain was his siblings. I saw photo’s and recalled Caleb or Jada was trying to get Christian to smile. I saw photo’s memories flooded of times they would try to include him and he declined the invite. I began to think how absent I have been during these last years. Physically I am here daily. The dishes are washed. They have never missed a meal. They attend school and receive good grades. They are fine.

Correction, I thought they were fine.

When I sit back and think about the past, present, and future my thoughts engulf me. I recognize I have spent so much time focusing on Christian’s disability that I have sometimes overlooked the needs of his siblings.  This situation is unintentional of course; it’s just a byproduct for a mother of a special needs child. The natural assumption is that because the siblings don’t have a disability they are functioning normally so they are well. False. The sibling bond is too vital of a relationship to overlook in any family.  This relationship becomes crucial within special needs families because the brothers and sisters will be in the lives longer than anyone else. My children are the most dynamic people in Christian’s life. Long after I have passed his siblings will remain.

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However, admitting we have a problem is the first step! The guilt I felt knowing Jada felt left out because she never gets checked out of school. The regret I experienced when I missed key moments at Caleb’s game because I was watching Christian in a meltdown. Countless times I have asked them to leave their homework on the kitchen table for me to check… all for me to forget to look over it because I am consumed with something else. I slipped. I fell. I get back up. I acknowledge to the children that I see them and I apologize for the times I did not. Parents are people. I am not here to mimic perfection for my children. I would much rather them see me humble, strong, and determined to do better. Now, not every parent sees it this way, but for myself I prefer to keep it real.

I will go into further details about ways I have learned to grow with my lovely children. I will share my steps and I would love to hear from you! Can you relate to anything I have shared today? Do you know someone who can? How do you feel about special needs siblings?!

Until next time… all our love.

SNS!

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Special Needs Siblings: Shalyn & Quentin Reynolds

Special Needs Siblings: Shalyn & Quentin Reynolds

❤️🌟 Thank you so much Shalyn for being such an awesome sister!! We really enjoyed hearing from you and wish you the best in every future endeavor! We love you, SNS 🌟
I am Shalyn Reynolds. I’m 19, from Michigan and my brother is Quentin Reynolds.
SNS:  What does ‘Special Needs Siblings’ mean to you?
Shalyn: The phrase special needs siblings mean to me that you’re a brother/sister to somebody who’s not quite like you, but they deserve the same love and attention a normal child gets. You just have to understand their different likes and dislikes.
SNS: What are some ups and downs to being a SNS?
Shalyn: Some ups of being a Special Needs Sibling you get to have a challenge with dealing with them, learning different things about their disability, being a role model to them. Some downs of being a Special Needs Sibling having to worry about them not fitting it with other kids, them not getting the same attention as the normal kids.

SNS:  Do you have a favorite memory with you and your brother?

Shalyn: My favorite memory with my brother was going to Chicago for a skateboard championship and he got to meet all of his favorite skateboarders, he’s really into skateboarding. Just seeing how happy he was made me happy and excited he got to be there.

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SNS: What’s your dream? 
Shalyn:I’m majoring in special education, my dream is to open up a facility for kids with special needs so they can interact with other kids with special needs, they’ll be able to feel comfortable, do different activities just something fun for them.
SNS: Is there anything you enjoy because of your brother?
Shalyn: My brother is big on skateboarding I never once liked skateboarding until he started to like it he’s always outside riding his skateboard I get on it sometimes just to make him happy. If he’s not outside skateboarding he’s in the house watching it.
Special Needs Siblings: Ciara & Steele Hibdon

Special Needs Siblings: Ciara & Steele Hibdon

❤️🌟 A deep thank you to Miss Southeast International, Ciara Hibdon, of Fayetteville Arkansas. She is the older sister of Steele and we honor her for being such an amazing big sister!! We love you, SNS 🌟

Steele and I have had quite the extraordinary life. Being exactly two years and two days apart we share a close bond and have shared countless birthday parties.

At the age of three, Steele was diagnosed with autism. I was five at the time. I remember hearing the word autism for the first time and thinking, “but there’s nothing wrong with him”. Since that day it has been my mission to be his advocate and a Hero for Autism. Through our brother sister bond I have learned compassion, patience and most importantly hard work.

We were told Steele would never graduate high school, this fall he will be attending the University of Arkansas studying journalism in the honors program. None of this would have been possible without his Heroes for Autism.

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As Miss Southeast International I am spreading the message of autism acceptance through my platform Heroes for Autism, we often hear of autism awareness but not acceptance. My job, to educate and encourage others to reach out and befriend those who minds work a little differently and help create a world that is more sensory friendly for these people.

I am working with Walmart Corporate on enhancing the shopping experience for those who have autism and other special needs by offering quiet hours and assistance shopping and checking out. It’s the simple things that make the biggest difference.

Steele has gone to infinity and beyond to be where he is today and I am so proud of the young man he has become. He inspires me each and every day and makes me strive to be a better person. He truly is a Hero for Autism.

Special Needs Siblings: Scholarship Opportunity

Special Needs Siblings: Scholarship Opportunity

Yow Sibling Scholarship

SCHOLARSHIP INFORMATION:

Yow Sibling Small Scholarship Application: Due May 31, 2017 by 11:59pm

Requirements for Scholarship: must be a college student who ACTIVELY participates in taking care of their sibling with a physical ailment, physical disease, and/or physical disability. Must be enrolled as full time student, and must not be on academic probation. The limitations are not bound by state or university in which the individual attends. —email proof of enrollment at a University to Bella Soul (does not need to be a transcript; scholarship is not based on GPA but will be taken into account)

Name:

Year:

GPA:

University:

Disease/Disorder:

Please write a 3 page double spaced story about the triumphs and struggles of helping to take care of your sibling with a disease/disorder. Include answers to the following questions: Explain your day to day routine. Explain what you have learned from your sibling who is confronting a disability. What advice would you give to another individual confronting similar adversity?

Link for more information: http://livebellasoul.org/scholarships/sibling-scholarship