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Super Sibling Submitted by Dad!
Hi there, this is Jack and his big brother Stuey.
Jack has Idic15, autism, heart block and Lennox Gastaut syndrome Epilepsy. 3 1/2 years ago after an awful tonic clinic seizure Jack had stopped breathing , Stuey stayed calm and administered CPR and saved Jacks life , the doctors said without Stueys intervention We would have had a different outcome . Jack is 17 soon and is having VNS surgery very soon.
We are proud to honor you Stuey! Thank you for being such an amazing brother! ❤️
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, I honor him first.
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. 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, 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 ‘Faithful, whole-hearted’ and John, after your late grandfather means ‘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.
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, ‘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.
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 “Caleb, Mommy loves you. Please, talk to mommy.” You look at me and your eyes begin to swell. Then I repeat, “Caleb, Mommy loves you. Please talk to me. What is wrong?” Tears burst from your sweet and innocent face and you say, “Mommy, you love me?” 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 head to face me and say, “Caleb, 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.
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, “Mommy, why does Christian get an assigned seat at the table? Why can’t anyone else sit there or he gets mad?” My response was, “Caleb would you like to pick your own special seat at the table?” “Yes! Yes! Mommy, I want my own,” he replied. 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 ‘assigned’ seats. She is very funny and witty as well. She said to Caleb one night, “I 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.” 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.
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! 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.
❤️🌟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: ‘Ask all the questions you want, but just don’t make any smart ass remarks!’
❤️🌟 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 🌟❤️
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.
I have been asked what prompted me to begin Special Needs Siblings right now. Honestly, my response is my children. I truly wish I had begun it earlier, but better late than never! I am the mother of five amazing children, the eldest who has autism and epilepsy. The roller coaster ride I am on is one thing…but being the mother and witnessing the journey of these five is priceless.
Jada (8), Rose (1), Caleb (9), Raymond (1), Christian (11) – [left to right]
When Christian was 2 he was diagnosed with epilepsy and autism. He has had multiple seizures on a daily basis since then. He is on a variety of medication, sees numerous doctors, and several therapist. He has been progressing in the way of communicating, but we still have a ways to go. Now, when it comes to my other children I always feel spread thin because of all that goes into Christian. This is not the life you see on television or read about in a magazine. As the mother, I am responsible for the wellbeing of my clan, but indirectly all the other children are affected. I can recall when Caleb was 6 he laid his weeping head on my lap shared how he wished he was sick. He went on to explain that he wanted to be checked out of school, he wanted to go to appointments, he wanted to not have homework… his requests continued. My heart sunk. I went from being appalled he would want to be sick, take daily medication, have difficulty using facilities or being able to communicate. Yet, on the other side of my seesaw I felt a heart pounding ache. I had no idea he felt so left out when it came to his brother. I tried to keep him involved at school, in extracurricular activities, visiting for lunches, but still he could sense the separation. At the age of 6, he could sense the differences evolving. One thing I never wanted was them to feel at odds with each other.
Now, I was already involved in my local community groups for Christian: Autism, Epilepsy, Special Needs, but nothing was catered specifically for the siblings. There was no assistance for the special siblings who accompany their differently-abled sibling throughout life. These are my reasons why. They are my late night researching; they are my early morning phone calls, my hundred emails… Special Needs Siblings are so vital to a healthy family. Sibling rivalry is common. Sibling discord happens. In families with special needs it can be easy to not see the unhappiness, the frustration, the anxiety our special siblings feel towards their life or their sibling. Communication is everything and being able to express their feelings without judgement. Feelings are never wrong. Actions can be wrong. I wanted to make an atmosphere full of acceptance, understanding, and pride. This is a place our parents can show off their special siblings in a positive light. This is a place siblings can talk to other siblings about their personal highs and lows. I have had the pleasure of meeting adult siblings and they are filled with the most patience, passion and love. I personally like to think that is in direct correlation with being a Special Needs Sibling.
Special Needs Siblings are proud of their siblings. They are proud of themselves, their families, and to share their hearts.
How do you feel being apart of a special needs family? ups or downs?
We are Special Needs Siblings and we are so glad you came by to visit us! Special Needs Siblings is a grassroots community that began in April 2015. I am a mother of five, one of whom has autism and epilepsy. In simplicity that is where it all began, with them. I will be taking time to talk about each of my children and the different reasons why I began this organization with greater detail in upcoming posts. FIRST, I want to humbly thank you and welcome you to our page! Whether you just stumbled upon us or purposefully searched and found… we are glad you made it!
Special Needs Siblings, SNS, are an elite group of individuals. They were chosen by fate to enter into families that are challenging and equally as rewarding. Our siblings are privy to from youth to elder to accompany their Special Needs Sibs on journeys throughout life. We want to honor, cherish, and encourage our siblings that are in the group! You are seen. You are heard. You are not alone. We appreciate your patience, your persistence, your passion but equally acknowledge you frustrations, your feelings and your concerns. This is a place for you to be YOU! It is okay to not be okay! We know the love you have for your siblings far outweighs those mad moments!
As hard as we try as parents we simply do not always get it right! This place is for parents to praise their siblings as well! Let us know how they are doing, anything they have participated in! We look forward to sharing your stories, sharing our insights, and just building long last friendships with siblings around the world!