Where Have We Been

Where Have We Been

WORKING REALLY HARD! I PROMISE…

Screenshot (90)

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

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.

img_2584-1

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.

img_2636-1

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.

img_2586-1

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: 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 🌟❤️

image2-1

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.”

image1-1

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!”

image3-1

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 🌟❤️

14352571_1210197749002803_7558257916217253999_o

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

14311196_1210197689002809_2446747383784465261_o