Where Have We Been

Where Have We Been

WORKING REALLY HARD! I PROMISE…

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Please join us on our NEW and IMPROVED website www.specialneedssiblings.com !! We have transitioned and hope you can come too!! We miss you but we are back!! Thank you for giving me the support and encouragement to continue! We are a strong community and I pray we continue to grow and improve.

LOVE,

SNS

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 isΒ Quentin Reynolds.
SNS:Β  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:Β 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:Β Β Do you have a favorite memory with you and your brother?

Shalyn:Β 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?Β 
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:Β 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: Alex & Jackson

Special Needs Siblings: Alex & Jackson

❀️🌟 A heartwarming thank you to Rebecca, a  34 year old mother of four: Alex (8), Jackson (7), Ava (6), and Isabel (4), from Tennessee. She allowed her son Alex to take part in our SNS interview and share parts of his heart with us! We honor you, Alex! SNS 🌟❀️

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SNS: What is your favorite memory?

Alex: β€œWhen Jack and I rode roller coaster together at Dollywood and we screamed and laughed and had a great time!”

SNS: Are there any activities you like because of your sibling(s)?

Alex: β€œI love making Jack laugh! He thinks it’s funny when I act out different movies and we play together. He makes me want to be a better actor, so I’m always trying to find new costumes and things to make him laugh and happy.”

SNS: Has your sibling ever influenced the type of friends you associate with?Β 

Alex: β€œSome of my friends I don’t talk to anymore, because they made fun of Jack when he left school. It wasn’t Jack’s fault but they won’t listen and they wouldn’t leave him alone, so I don’t hang out with them now.”

SNS: Does your relationship with your sibling(s) make you strive to better yourself in any aspect of your life?

Alex: β€œJack makes me want to be kind. He makes me want to help other people and he shows me how to be strong. I like that Jack thinks I’m funny and that I can help cheer him up whenever he’s upset or angry.”

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SNS: Do you think your positive relationship with your sibling(s) has helped you gain important characteristics such as confidence and compassion?

Alex: β€œJack showed me that I have to stand up for people. If I see someone getting picked on or made fun of, I have to step in and tell the other guy β€˜hey, knock it off!’ And if they don’t, I have to find a teacher and get them to stop. It’s not funny to pick on people and I don’t like it when kids pick on people who can’t talk.”

SNS: What are two things you wish everyone could know about people with a disability?

Alex: β€œI wish people knew that Jack can’t help it sometimes. When he gets upset, he’s trying not to be, but he doesn’t know how to say what he wants to, and that makes him mad. I wish people wouldn’t make fun of Jack. It hurts my feelings, because Jack just wants to be friends with people. He’s my best brother and my best friend. And I have to help him because I’m his big brother and I love him.”

SNS:Β What in your view should people not say to siblings of people with a disability?

Alex: β€œDon’t make fun of people with autism. It isn’t funny. They aren’t making fun of you!”

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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. β€”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:Β http://livebellasoul.org/scholarships/sibling-scholarship

Caleb the Great

Caleb the Great

Previously, I mentioned my big boys, Caleb and Christian. Caleb is my second oldest child and has been accompanying Christian the longest on his journey. It is for that reason, Β  Β  Β  Β  I honor him first.

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Oh Caleb, my dearest Caleb where do I begin? My pregnancy with you was hard for multiple reasons. It was while pregnant with you I learned your brother was having seizures. Β We had no idea. Christian had been making these weird motions with his arms, but we assumed he was playing. I was pregnant with you. My dad, your grandfather passed away. It was at this time, Β Christian digressed from pointing out his head, shoulders, knees and toes to not saying a word at all. I was pregnant with you, when fear grew within my heart about the future of my boys.

We named you Caleb John because Caleb means β€˜Faithful, whole-hearted’ and John, after your late grandfather means β€˜God is gracious.’ We knew that regardless of what was going on with your brother, and in my life at the time you were chosen and special. When you arrived a week after your due date, I knew you were going to make your own mark on the world. I was filled with so many emotions! You were bigger and longer than your brother, with popping brown eyes and a head full of curly hair. We were overjoyed.

Now, fast forward a couple years and you have surpassed your brother in the way of speech. Even though you were two years apart, I was potty training you both simultaneously. And oh, boy do I remember those days so vividly. You were wearing pull ups and because Christian was so much bigger he had to wear Goodnights bedtime all throughout the day. You were catching on so quickly. We had the small portable toilet with Sesame Street on it, and you would run with excitement to sit on it! Christian was extremely reluctant. I spent so much time with Christian, cleaning up his accidents during the day and evening. I was just so relieved you caught on so quickly. I kept anxiously looking for signs you would digress, but you did not. You retained everything that came your way.

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Caleb, I can recall specifically once when you were 4 and Christian was 6. We were at the one of Christians’ Special Olympics events with his school; you turned to me and said, β€˜Mommy, I want to do that one day.’ I looked at those bright brown eyes staring at me so proud of your brother! You were so happy to be with him and see him get ribbons for placing in the track and field event. I thought to myself, I pray this never ends. I pray you always see Christian as your brother, an individual, without shame or concern for the world and their judgement.

You would follow Christian around even after he pushed you to the side. I had not told you he was autistic or epileptic. You saw him taking medications, you witnessed numerous doctors’ appointments and testing, and you sat patiently in waiting rooms while he underwent therapy all very young and with a smile. Hindsight, I did not see the frustration and jealousy building in you. I was so consumed with making sure Christian survived another night I completely missed the signs of discord in my two precious baby boys. I knew you were on track and I just assumed you knew mommy loved you too.

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Speed up, another two years, and you are all in primary school. Christian is taking a different bus than you, Christian is sent to an alternative school because they do not offer his class at yours, and Christian is being taken to therapy three afternoons a week that we all have to attend together. We play outside, and discuss your day while he is in his session, but one fall day it is different.

One fall day, I see you quieter than usual. I approach and ask you what is wrong. My strong, loving, silly boy seems so distant to me. I just wanted to know what is troubling you, so I ask again. I ask you to look into my eyes, and I say β€œCaleb, Mommy loves you. Please, talk to mommy.” You look at me and your eyes begin to swell. Then I repeat, β€œCaleb, Mommy loves you. Please talk to me. What is wrong?” Tears burst from your sweet and innocent face and you say, β€œMommy, you love me?” Β Now, I am crying and a million thoughts flow through my head. How can you ask me that? Why would he feel this way? Where did I go wrong? I hold you tightly and gently turn your Β head to face me and say, β€œCaleb, baby, of course I love you. Of course, Mommy loves you.”

He goes on to explain how he wishes he were sick, and he got to do special things, and I just felt so lost. I felt like all this time he has been excelling, he has been so talkative and happy, I missed it. I failed him. It is then I had to set aside time to explain the differences between him and his brother. It was then at the tender age of six, I thought I was doing all I could to protect Christian I let Caleb slip through the crack. Afterwards, we talked and talked some more. I let him know he does not have to apologize for his feelings, but he can always come to me or his father and let us know. We will do our best to answer any questions and clear up any uncertainty.

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Caleb is an extraordinary child with a special brother. Caleb is a special brother to his special brother! They are now eleven and nine, respectively, and although they fight, argue, and nitpick. Caleb no longer wants to be his brother; he wants to be there for his brother.

He has moments he does not understand why Christian has to do things a certain way, for example, there is only one seat at the dinner table he sits at. He will not eat from another seat, so one evening Caleb made it the topic of conversation. Caleb asked, β€œMommy, why does Christian get an assigned seat at the table? Why can’t anyone else sit there or he gets mad?” My response was, β€œCaleb would you like to pick your own special seat at the table?” β€œYes! Yes! Mommy, I want my own,” he replied.Β  I was happy to do it. It was simple and I took the time to listen to his requests.

Now, a few weeks pass by and his sister Jada, who is seven, is choosing a different seat every night. She just refrains from sitting in the two β€˜assigned’ seats. She is very funny and witty as well. She said to Caleb one night, β€œI do not want only one seat. I like being able to switch. If Christian wants that one that is okay with me because that means I have to sit in the same seat every day. Boorrrrring.” Β I chuckled inside. Later that week Caleb came to me and asked if he could just sit wherever he wanted again. He liked having more options. I laughed and gladly granted his request.

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I will discuss Jada on another date because she is a character all her own. I just wanted to share with you all some personal struggles I have dealt with and continue to deal with concerning raising siblings, more specifically special needs siblings. I went through my periods alone and doubting my mothering capabilities. It was not until I began Special Needs Siblings that my eyes were opened to other families in similar situations.

Caleb is super protective of his big brother now. He is still his biggest fan and biggest annoyance. They are brothers. They are not perfect, but progressing just like their mother. We stumble and it gets messy, but we are all here enjoying this ride. There are so many stories over these years, and there will be many more to add on! Β I hope you will take this all with a grain of salt and lots of love. If you choose please write to us and allow us to share your Special Needs Sibling story. We would love to interview you from a parent perspective or siblings point of view!

We are small community with a large heart and overflowing with love.

XO~

SNS

He Is My Hero

He Is My Hero

❀️🌟Thank you Lauren Cantu for sharing part of your heart with us being a Special Needs Sibling. Your passion, humor and love are felt in so many ways! We honor you! SNS 🌟❀️

I am the older sister of a beautiful baby boy with special needs, his names Jacinto a.k.a monkey a.k.a dweeb a.k.a sissybooboos pumpkin head. He inspires me, that boy is my hero he has been through so much and still smiles and is always full of happiness. It doesn’t matter where we are he always gets me dancing and singing my heart out!! One piece of advice when speaking to a Special Needs Sibling: β€˜Ask all the questions you want, but just don’t make any smart ass remarks!’

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A Mother’s Heart

A Mother’s Heart

❀️🌟 Thank you Olivia Kimbrough for sharing the following story about your personal journey as a Special Needs Mom. Your transparency and strength touch us deeply! Your family is beautiful and we honor you all. SNS 🌟❀️

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When Thomas was a baby (4 months old) my mother Juanita Zenquis Steelman and I noticed that something was different about him. Thomas would tense up and shiver as if he was cold. I did not know exactly what was going on, so I wrapped him in his blanket and rocked him to sleep. As soon as I comforted him he stopped shivering so I laid him in his crib. My mom told me that what she saw looked like seizures. I made Thomas a doctor’s appointment to be checked out. At his appointment he started tensing up and his hands started jerking in slow motion. His doctor jumped up and told us that we had to go straight to the hospital and said there would be a room ready for him. When we got to the hospital there was already nurses and a few doctors in the room and of course my husband and I were panicking.

After a few hours of monitoring him, the doctors came back into the room and informed us that he was having seizures. They started him on medication to see if it helped. As the day went on Thomas continued to have these “seizures”. After running a whole bunch of tests and being admitted for 3 days the doctors finally had (what they thought were) answers. They diagnosed Thomas with Microcephaly (abnormal size head), Dandy Walker Variant Syndrome, and seizures. They handed me his discharge papers and sent me on my way. Here I am trying to get myself together for baby Thomas, but something just did not sit well with me so I reached out to different doctors for a second opinion. I was told to give it sometime for the medication to work and if I did not see a difference they wanted me to bring Thomas back in. A few weeks went by and the spells started to get worse. So my husband and I took Thomas to the hospital and they admitted him once again. They repeated the tests and this time his diagnosis was different. They said that it was not seizures and diagnosed him with Dystonia.

Dystonia is a state of abnormal muscle tone resulting in muscular spasm and abnormal posture, typically due to neurological disease or a side effect of drug therapy. I was told that there was no cure, but medication could possibly help. My heart dropped after hearing that. Months went by and we noticed that he wasn’t doing what kids typically should be doing at his age. He wasn’t talking or walking .We were told that he would more than likely need a walker in the future. As of now he has to wear a helmet to prevent him from hurting himself when going into one of the Dystonia spells.

With all of that being said Thomas is now 2 years old and he has physical therapy, speech therapy, and occupational therapy. Thomas does sign language and is currently in school doing great.

#Dystonia #MothersHeart #MamaBear

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