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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MOMMY, I AM SCARED

MOMMY, I AM SCARED

I have been blessed with five beautiful children and for that I am eternally grateful. Sometimes I sit back and wonder how to answer the questions my older children have about their eldest brother. Everyone knows Christian has autism and epilepsy. He has been having intractable seizures since the age of 3 and he is now 12. The same type of concerns I have regarding Christian, like his health and future, his siblings are now having.

I feel a little lost at times because the questions will only get more difficult to answer and I am struggling even now.  I attempt to give time to every child, but I know they see mommy take Christian to therapy 3 times a week… they see me giving him medications twice a day… see me assist him while taking a shower, or during a meltdown in the isle of Kroger. They see everything and boy, are they amazing. They go above and beyond trying to make Christian comfortable even when he is resistant. But then there are moments I realize they are hurting too…

Last Friday night I walked into Caleb’s’ room and asked him how he’s doing…

Him: “Fine,”

Me: “Caleb, look at me. How are you feeling?”

Him: “I’m okay mommy, just thinking,” he answered reading his book.

Me: “Well, what are you thinking about, baby?”

He turned away from his book and our eyes locked. His eyes were watery and his lips quivered.

Me: “Please, talk to me baby? What is the matter?”

And then it began… seemingly out of the blue, but not really.

Him: “Mommy, I’m scared… I get scared for Christian. I just don’t know what to do.”

Me: “Well, what scares you? What do you mean?”

Him: “When he has seizures I get scared. I want them to stop… I wish they would stop.”

Me: “I understand. I want that too. Mommy and the doctors are trying really hard to make Christian better. It isn’t always easy.”

Him: “I think maybe if he did not have any seizures he would like me more. He never wants me to help him or touch him. I am just trying to help.”

Me: “I know baby, I know. How does that make you feel?”

Him: “Lonely. I wish I had a brother that would play with me sometimes. I love him. It is just sometimes hard mommy not to be mad at him. I know you say he is trying and he can’t help it. It just still hurts.”

In this moment I wanted to literally break or simply slide into my carpet. My entire soul felt like it was being stretched to some unfathomable length. Our special siblings work tirelessly to please their siblings and their parents/caregivers and are sometimes accidently overlooked. I know my feelings about Christian from a mother’s perspective are strong, but hearing from the mouth of my 10 year old son humbled me.

I always teach my children that their feelings are important and valid. Their feelings don’t have to be validated by anyone or anything. They are to be owned, accepted and understood. Now, your actions have consequences. Regardless, of any feelings you may have you are always responsible for your actions. Now, my personal thoughts are that many adults have difficulties because we have grown weary trying to mask our feelings.

So I sit here writing thinking about last Friday night. I am feeling weak and uncertain in this moment.

Like Jeniece, how do you explain to your second oldest child that his big brother may not ever want a hug from him?

What do you say as you wipe the tears from his face while he asks, “What can I do to help Christian get better, Mommy?”

What is the best response for the question, “why doesn’t he like me anymore?”

I love him, but I don’t understand him and that scares me.

How do I answer these questions and more… when I have similar unanswered questions?

Caleb, can see his friends developing relationships with their siblings. The laughing, joking, playing around he witnesses around him, but can’t experience at home. He is having a difficult time adjusting to being the second eldest, but having first child responsibility. He is unable to have those laid back conversations with Christian without it turning into a battle. He is increasingly becoming aware that although Christian is in 7thgrade we are still working on buttoning a shirt. We are still practicing washing our hands, back and front, while singing the alphabet song. Caleb is aware that Christian’s echolia bothers other children who do not understand that he is simply trying to be more like them.  I see it in his eyes, but as a mother how can I help him.

This mother is researching. This mother is writing. This mother is trying, failing, and trying again. The relationship between a differently-abled child and their sibling is unique. It is something I have trouble wrapping my head around at times because I am still learning everyday how to be a successful special needs parent.

How do you work with your children? Have you ever encountered a similar situation? If you are a sibling, can you relate to Caleb’s experience? Please, let me know because I would love to hear from you!

Love you all!

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: “When 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: “I 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? 

Alex: “Some 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: “Jack 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: “Jack 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 ‘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: “I 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: What in your view should people not say to siblings of people with a disability?

Alex: “Don’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. —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

Special Needs Siblings: Jack & Stuey 

Special Needs Siblings: Jack & Stuey 

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! ❤️ 

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,         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.  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.

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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, ‘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 “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.

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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, “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.

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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!  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

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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