Why It’s OK When My Son With Autism and I Need to Leave a Party

2k
2k
2

“Where are you going?” We’re often asked this question when we have to remove our son, C, from an activity, family gathering or a party.

“He needs some quiet time,” we’ll say. Our response is often met with confusion, a remark that I must also need quiet time or a simple nod of understanding. Maybe I was naïve, but I thought it would be easier for others to understand after my son had been diagnosed with autism.

Over the years, we discovered that scheduling breaks to avoid sensory overload is necessary to our son’s success in any non-routine situation. We didn’t always schedule breaks for him and learned the hard way. Meltdowns came out of nowhere — or so we thought. The truth is we didn’t know how to recognize his nonverbal communication.

Now I can see when he starts to get on edge. He clings tightly to a Matchbox vehicle — maybe even one in each hand. Cars and trucks have always been his comfort items. He calms himself by playing with them, resting his head on the ground to study the wheels.

He starts to snap a little at other children, not allowing them to play near him. If his sister is there, he picks an argument with her to place his frustration somewhere “safe.”

Verbal communication diminishes. Baby talk, grunting or whining begins.

Instead of seeking out new toys or playmates, he retreats into his own world. He ignores the kids around him and refuses to let them into his bubble.

Once any of these signs appear, I whisk him away to a quiet place. We call it his “quiet time,” and we go to a quiet room and close the door. He can play with cars or watch a cartoon. When he is able to retreat to a quiet, safe activity, then he finds a way to center himself.

Now that he’s 4, he’s better at telling me what he needs. “I want to go home,” is actually code for, “I have reached my limit.” Time has taught me that making him stay is unfair and, in some cases, can hurt him. Making him stay means forcing his body into sensory overload and discomfort, which will result in explosive meltdowns.

Being a special needs parent has toughened me a bit. I used to care more about what people think, but now the bottom line is this: I need to do what is best for my child.

Kristin Novotny the mighty.2-002

Follow this journey on Little Mama Jama.

2k
2k
2

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

When My Lowest Point Was Also My First Step to Mental Health Recovery

185
185
0

The end of last month marked the one-year anniversary of the worst time of my life. One year ago, I decided life was not worth living. One year ago, I gave up completely. One year ago, I ended up in the hospital where I was sure I would die. But something amazing happened. One year ago, some of the strongest people I know came to my side to support me and help me get better.

My parents drove six hours in the middle of the night to meet me at the hospital. My parents hugged me, told me they loved me and in the morning packed up all my belongings and drove me home. I remember feeling like my life was entirely out of control. I remember feeling anger and fear as I left my home and my friends. In a moment of clarity I wrote this…

“Sometimes the best thing is the hardest thing. Sometimes it feels like you’re going to die doing it. Sometimes it feels like your heart is being ripped out of your chest. But if it’s the right thing, the best thing, it will all work out in the end and all that pain will be healed.”

The first few weeks were the most difficult. Making decisions were just too much for me. My mom had to stop everything to take care of me. It was like having an adult toddler. She had to tell me to put my socks on and then my shoes. She had to tell me to get out of bed and tell me we were going to the doctor. She even had to sit with me at night until I fell asleep. Not once did my mom complain about it. She did everything she could to help me find a way to recover.

I remember seeing a psychiatrist at the hospital, telling her what I was going through. She was the first doctor to tell me that what I was going through was real. She was the first person to look me in the eye and tell me that it was not my fault. She was the doctor who diagnosed me with my bipolar disorder.

I spent most of the first week sleeping. My body had been through so much with so little sleep, it was a necessity to get better. The next three weeks I spent in a program where they taught a group of us how to eat healthier, explain our illnesses and give us specific tools to help manage them. The doctors worked together to monitor and diagnose me further, helping me find the medication and resources necessary to help me recover.

The past year has been a long and hard walk to recovery. It hasn’t been easy and was full of lots of ups and downs – literally. Bipolar disorder is a hard thing to deal with when it’s not managed well. But my family, my friends and my doctors have all been there for me, and I’m finally at a place where I can take both reigns of my life and live.

One year after that horrible day, I am strong, successful, recovered, stable and happy. I love my life and I cannot imagine giving it all up. I owe a million thank you’s to all the wonderful people in my life who helped me recover, deal with my new diagnosis and stuck around, even when life got hard. I love you all, and I can’t imagine where I would be without all of you. So thank you.

This post originally appeared on Defying Shadows

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

185
185
0
JOIN THE CONVERSATION

Rapper Fetty Wap Gave Boy Missing an Eye Something His Parents Couldn’t

997
997
0

A rapper’s unapologetic individualism taught one young boy a valuable lesson.

Brenda Vader, from Denver, has a son named Jayden who was diagnosed with retinoblastoma when he was only a year old, according to a post on her Facebook page. Retinoblastoma is a rare cancer of the thin membrane on the inside back of the eye that is stimulated by light, according to St. Jude Children’s Research Hospital.

Jayden’s cancer treatments ended up costing him his eye, and he’s worn a prosthetic ever since — that is, until rapper Fetty Wap came onto the scene.

Screen Shot 2015-09-16 at 12.05.15 PM

Willie Maxwell II, better known as “Fetty Wap,” hit it big this summer with his song “Trap Queen.” Maxwell was diagnosed with glaucoma when he was 6 months old, which resulted in him losing his left eye, he told TMZ. But the rapper now refuses to wear a device to hide his missing eye.

“I just stopped wearing the prosthesis because I didn’t want to look like everybody else,” Maxwell told TMZ.

Jayden, a fan of Fetty Wap, recently made the same decision — he decided to stop wearing his prothesis. His mother posted about Jayden’s decision on her Facebook page.

 

(Warning: long sentimental post ahead) Today I am forever thankful to a young man named Willie Maxwell aka Fetty Wap….

Posted by Brenda Vaden on Thursday, September 10, 2015

 

Read the full text of Vader’s post below: 

(Warning: long sentimental post ahead) Today I am forever thankful to a young man named Willie Maxwell aka Fetty Wap. While his music is catchy (not always agree with his lyrics but hey who am I to judge…), I’m not necessarily his fan (although Trap Queen is my jam), BUT today I’m his biggest fan.

Many close friends, and of course our family know that Jayden was diagnosed with Retinoblastoma at the age of 1. In result of that he had his right eye removed 2 weeks after his 1st bday. He’s worn a prosthetic eye since then. He has always been terrified of taking it out and would not be caught without it…and then comes along Fetty Wap…

Similar to Jayden he lost an eye at a young age and along the way he decided that he didn’t want to wear his prosthetic eye anymore, so he stopped. Jayden, let it be known, is a Fetty Wap fan, a real fan, not like me ha! Well, today, after weeks of asking, Jayden is venturing the world without his prosthetic. I of course am a wreck because this world can be cruel, but so proud of our Boogies. This young rapper unknowingly gave Jayden something we weren’t able to give him — the confidence to be different — and I am grateful to him. Thanks to Fetty Wap for saying F the world this is me, and for helping make our baby boy just a little more remarkable than he already is. And we’ll be purchasing his album, a small thank you to him for changing Jayden’s life forever.

Since Brenda Vader posted the above on Facebook and Instagram, she’s received an outpouring of support.

Check out the video for Fetty Wap’s song “Trap Queen” below: 

h/t BuzzFeed

997
997
0
TOPICS
JOIN THE CONVERSATION

To Someone Who’s Just Been Diagnosed With Schizophrenia

462
462
0

So the doctors just told you you have schizophrenia?

Listen to what they have to say about treatment. Plan to make medications part of your life. Know you’ll have to take them seriously and regularly.

Then, relax — life is not over for you.

Let all the stereotypes you’ve been subjected to over the years go. Having schizophrenia doesn’t mean you are destined to hurt people, believe in wild conspiracies or talk to voices on the street.

You will hear people say that schizophrenia is the most (or one of the most) severe of the mental illnesses. You will read stories about people who became completely different after their first episode. You’ll hear stories about that “bright and shining star” who is now suddenly unable to perform the most basic tasks. Don’t believe them, you are still a bright and shining star.

You can still go to college. You can still have a career, or buy a house or get married. You do not have to be defined by your illness. You may have to work harder for some things than other people, so prepare yourself to be strong. Prepare yourself to be courageous. Prepare yourself to walk a path not many have cleared for you. The trail can at times get thick with weeds, but you have the tools to cut the overgrowth. You can move a branch, or jump over a log. Just because your path isn’t well manicured doesn’t mean it isn’t beautiful. There is beauty in the wild. There is beauty in adventure. There is growth and discovery.

Bring a camera and a notebook to document your journey. Your work could make the path easier to pass for those who come after you. Find your heroes. Find the success stories. Learn their tricks when things gets hard. Don’t be afraid to look for clues in the stories of others.

Don’t let the illness be your life, dictate your fulfillment or happiness. Find your passion, and live not for your illness but for that passion. Be a scientist. Be a business owner. Be a painter. Be a lawyer. Be a writer. Dream big. Schizophrenia can change your dreams, but don’t let it steal them.

If things get tough, and they occasionally will, be prepared to get back up after the fall. Become an expert at getting on your feet. People who get up over and over again are not failures — they are fighters. Be a fighter. Be a fighter for me, for you, for the people before us and for those after us.

And remember the most important thing of all: you are worthy of true love. Don’t deny yourself relationships. In these relationships you’ll have the chance to discover your deepest nature, and it won’t have anything to do with schizophrenia.

You are not schizophrenia. Remember those words.   

Follow this journey on A Journey With You.

The Mighty is asking the following: Give advice to someone who has just been diagnosed with your mental illness. What do you wish someone had told you If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

462
462
0
JOIN THE CONVERSATION

10 Things All Teachers Can Learn From My Son’s Special Education Teacher

823
823
0

Like many parents of kids experiencing special needs, I was thrown into this world not really knowing what to do, what to expect and how to survive, let alone thrive with my child and help him thrive. By the time my son, Judah, was 5 and entering kindergarten, I had no idea what to do about school and no idea how to get what I believe he needed. At the IEP eligibility meeting, I tried to stand my ground and push for what I felt was best for my boy, but in the end, the strong-willed, better informed school district won. Judah was placed in an SLCB classroom (structured learning center for behavior).

I thought this type of placement was the end for him, an educational death sentence before he even got to begin. Little did I know what was in store for him, and who I believe God had set in our path to help.

I had no idea what to expect the day I entered Lisa Bach’s classroom. I walked in nervous and on edge, scared and unsure of what this was going to be like. She took one look at me with my nervous smile and nonstop chatter, smiled, shook my hand and said, “You’re doing fine, Mom, and he’s going to do wonderful!” I did not know this woman, but for some reason her bright eyes and firm kindness set me at ease. Judah flourished in her class.

Here’s a list of 10 things I think every teacher — whether general education or special education — can learn from my son’s first special education teacher.

1. She knew just what to say to a nervous mom on the first day of school: “You’re doing fine, Mom, and he’s going to do wonderful!”

2. She saw my son’s potential, his person and his ability, not his disability.

3. She believed in my ability as a parent and also gave me encouragement and an environment in which to thrive, which in turn helped my son.

4. She saw a need and went above and beyond for her student, assuring his success later in life beyond her classroom

5. She gave us hope. She taught us as parents how to build community, find our tribe and find our village. Because of this, we are happy and thriving today.

6. She was real with us. She didn’t sugarcoat the hard stuff, yet she delivered it with compassion, understanding, and a “we got this!” attitude.

7. She gave everyone — students and parents alike — room to make mistakes, learn and grow.

8. She truly made an extension of her classroom into our lives and community — and sometimes our homes — whenever it was needed.

9. She simply loved my kid and believed in him wholeheartedly.

10. She truly loved her job and believed in her work, and it showed through how her students and even their families were touched, enriched and flourishing.

To this day, the best year and academic success my oldest son has had was in kindergarten in Lisa Bach’s class, and we couldn’t have done it without her. Lisa helped us see our son’s potential and showed me how to dream, believe and advocate. I plan to get my Master’s in social work administration and have my own nonprofit someday, advocating for other families affected by disability, and I owe that dream to Lisa.

When I meet moms of kids at the beginning of their journeys — who look like I did, scared and shell-shocked — I think of Lisa and say, “You’re doing great, Mama, and he will be fine. It will be OK!” And it’s true.

Lisa Bach taught me the value of community and the true meaning of love and sacrifice by going above and beyond for our son and our family. There are so many more stories I could tell, but that would take too many words. So to close I just will say this: Thank you, Lisa, for loving my boy, for giving us hope, for being patient with a scared, talkative mom and helping us find our tribe. We are forever grateful.

Thank you to all the amazing and gifted teachers out there — you are diamonds in the rough!

Love,

Mama C

Follow this journey on Me, You, Wine, Cheesecake, and Autism.

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

823
823
0
TOPICS
JOIN THE CONVERSATION

I Grew Up Not Talking About My Disability. I Want to Change That for Others.

149
149
0

As I was growing up, I always had the feeling no one could relate to my experience of living with a disability. I have spinal muscular atrophy type II and scoliosis. I felt like I didn’t really “fit” in this world as my disability was never talked about. I went through mainstream education and overcame many challenges along the way. I never had a friend with a disability or illness growing up and had no one to relate to about being hospitalized for weeks on end.

In those days, there was no support in schools. My fellow pupils helped me day by day, but I often felt ignored by the teachers. I had terrible anxiety all the time and was incredibly introverted. I’m glad things have changed since then. I felt like I needed a survival guide to get through what would be a normal day to most.

Not talking about my disability was great on one level because I felt people just saw me for myself. But on another level, it felt I was denying the difficulties I was experiencing. I’m aware my parents were never offered any emotional support by professionals, and this meant they never had the opportunity to talk about the impact I had on their lives. No one can prepare for being told their child is disabled and that their daily life would be changed forever.

I wish I had someone to talk to when I was younger about my experiences so I could have had a better relationship with myself sooner. It was easy to be depressed, frustrated and isolated in my experience. I found myself protecting those around me from the fact that life was sometimes overwhelming for me. I didn’t want to upset my loved ones, since none of this was anyone’s fault.

So I became the girl who always had a smile on her face. No one could see past this, and it took a long time for me to work through the resentment I felt towards my disability. Growing up, I constantly thought about what I couldn’t do, what experiences I was missing out on and thinking my life would never be “normal.”

This was a difficult journey of acceptance to face alone. But years down the line, this inspired me to forge a career as a counselor. It wasn’t an easy decision to specialize in disability and illness, since I knew firsthand how complex those issues can be. Having gone through my own personal journey and finally appreciating everything my disability taught me, I felt it was time to offer this support to other individuals with disabilities. I have met some wonderful people on this path. And I have helped individuals acknowledge the difficult days but, at the same time, have encouraged them not to be defined by their disability or illness.

I feel I was given this hand in life to do something positive with it. I feel passionately that individuals should be supported to reach their potential. I think it’s important for individuals not to face their struggles alone. I want to make a difference to someone on their difficult days, and I want to rejoice with the person who celebrates what their life has taught them.

Helen Rutherford the mighty.2-001

149
149
0
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.