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: 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

Special Needs Siblings: We Need You

Special Needs Siblings: We Need You

If you know a special needs sibling…
If you are a special needs sibling…
If you are the parent of a special needs sibling…
Tag. Share. DM.Contact.
#SpecialNeedsSiblings

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SpecialNeedsSiblings@gmail.com

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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