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!

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The Sibling Seesaw

The Sibling Seesaw

Long time… No write… Count it to my head not my heart.

Lately, as a mother I have been on this rollercoaster of emotion especially with my boys, Caleb and Christian. I have spoken previously about inclusion and understanding regarding Caleb and his older autistic brother Christian. Now, I have been put in a bit of a pickle and I am praying I make the right decision.

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My sons are pretty close in age, 11 and 9, so their entire circle of close friends is the same.  I wouldn’t consider myself a helicopter mom, but they have never spent the night at anyone’s house other than family. So that pretty much brings us to date. One of their friends is having a sleepover and invited them to attend. Now, I agreed without hesitation because I know the parents, the children, and am comfortable with the environment.  This was a few weeks ago. Now I am hesitant. The birthday sleepover is this Saturday and I find myself extremely anxious. I do not want to separate my boys because they were both invited.

Firstly, I do not want Christian to attend and something negative happens while in someone else’s care. Sounding very ‘helicopter’ like, but I really do not feel at ease entrusting someone with him that isn’t trained or equipped to deal with his differences. Then I go back on my seesaw and think of Christian. I remember walking in to pick him up a couple weeks ago at daycare and he was balled up in a corner while younger kids were throwing blocks at him. He is 11 years old, but he was curled up crying. He was saying repeatedly, ‘Stop it. Stop it. No one likes me. No friend.” I had to remove him immediately. He has finally begun to associate himself with feelings of acceptance and friendship. He will ask for some of the boys attending the sleepover by name. This has been a transitional year for him going to middle school.  Christian has been making such great progress towards his communication. He is trying to hold conversations with kids his age rather than just standing parallel with them. If I do not allow him to attend am I also holding him back or simply protecting him.

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Secondly, there is his wonderful brother Caleb. Caleb is super excited about attending his first sleepover! No girls allowed, unlimited video games, pizza galore he is pumped up! I am thrilled he can spend time with his friends. He has spent the first half of the school year successfully bringing up his grades and receiving positive conduct reports. He has stood up for his brother numerous times… even though they still treat my house like a WWE match. I am so proud of his progress! He deserves some unfiltered fun.

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I’m torn because I would like Caleb to enjoy a sleepover without the undue pressure of watching Christian; on the other hand, I don’t want to deprive Christian of social development. Is it insensitive putting Christian’s special restrictions and concerns on another family during a time of fun?

I know this is just the beginning.  As they get older Caleb will want to do things on his own. Christian will need friends with more similarities. Is that even the right way to say it? I have never been good at being politically correct. I am blunt and bubbly. Yet, I really do not know in the moment. I do not know what choice I will make, but I pray for the peace to make it. I pray they both know how much I love them. How I would do anything to protect and nurture them, physically and emotionally.

All this just to say it is another day in the life of Special Needs Siblings. Do you have a similar experience? How did you cope? I would to hear about it!

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: 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: 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…
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#SpecialNeedsSiblings

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