Bringing Home the Gold

Special Olympics provides opportunities for those with mental, intellectual, and physical disabilities to participate in sports. I’ve always wanted Preston to compete in sports. I believed him being a part of something bigger than himself (being on a team) would give a boost of confidence, teach him discipline and structure. He attempted karate but he didn’t like it. Afterwards, I signed him up for a program especially designed for autistic children. They paired the kids with athletes to teach them the fundamentals of various sports. That started his growing interest in playing basketball. Yet, I knew he wasn’t prepared to try out for his school’s team. I still wanted him to have some structured physical activity so I considered enrolling him into Special Olympics. It took about a year to sign him up. By then, he missed the signup deadline for basketball but could join the swim team.

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When Preston was 6 years old, he started taking swim lessons. I felt that was important due to gaining knowledge about how autistic children tended to gravitate towards bodies of water. In many cases, there were too many unfortunate outcomes. He started off slow but began to gain confidence with every accomplishment.

He joined Special Olympics swim team earlier this year. He worked hard in practice every week. Just recently, he participated in his very first competition in the Michigan State Summer Games. He was so excited! His teammates were encouraging him to get the gold. I think I was more anxious than him. I wanted him to do well but didn’t want to apply additional pressure.

I eagerly watched as the first meet was about to take place. I wanted him to get a medal but I just wanted him to do his best. That boy took off so fast. I was so happy to see go! I was so thrilled that I didn’t see where he placed at the end. One of his teammates told me he won the gold. Talk about being a proud mother!!! I basked in the glory that he came in first place but he had one more meet to go. My nerves were still on edge. He set the bar high coming in 1st place during his FIRST ever swim meet. The second was a little more difficult and, to my amazement, he won the silver medal!
Preston was so proud! It showed him that hard work continues to pay off. What I was even more happy about was the entire experience. Just as it was his first time in a competitive sport, it was also our first time experiencing the magic of what Special Olympics gives the athletes. It allows them the opportunity to shine. Even though it’s competitive, it honors every athlete who’s participating. For example, people were still encouraging every competitor to finish. They were cheering until the last one crossed the finish line. For the Summer Games, there were approximately 2900 athletes participating. They say Disney is the happiest place on Earth but I would have to disagree. I never saw so many happy people in one place during our stay there. The athletes had a victory dance party on CMU’s football field. Everybody was dancing, laughing, smiling; just having the time of their lives. I felt so honored to have been a witness. I can’t wait for the next time. In the meantime, we are still celebrating Preston’s first experience and especially his victories!

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Let the Rain Come Down

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When I was a small child, I was terrified of thunderstorms. The pouring of the rain, rumble of thunder and striking of lightning often made me quiver with fear. I used to hide under my blanket. I can recall one time when a severe storm woke me up in the middle of the night. I was about 5 or 6 years old. I jumped out of my bed and ran into my mother’s room. I was petrified! She told me to get into her bed. Then, she wrapped her arms around me and held me until I fell asleep.

As I grew older, I became less frightened with thunderstorms. I began to embrace the sounds of rain, the bass in the thunder, and piercing lightning. Soon, I started to see the beauty of it all. The Earth is comprised of about 70% water. The rain makes everything in nature grow. Now, this isn’t about science. It’s about its importance to life.

I’ve had my fair share of ups and downs. I’ve had the pleasure of doing many things I’ve dreamed of. I have a great deal of happy memories and I’ll always cherish them. Yet, I’ve gone through incredibly dark times. Some felt like 2 tons resting upon my shoulders. I’ve cried so many times because I couldn’t see a way out of my situation…I cried a lot!!!

I’m an emotional person. Almost every time I got in trouble, tears poured down my face. I was scolded for crying. The message I received was crying was for the weak. Over time, my crying sessions were done in secret. I didn’t talk to anyone when I needed to. I didn’t want others to think me as a whiny, feeble woman.

It wasn’t until my son’s autism diagnosis that I realized that crying actually the opposite of weak. Many nights I laid awake at night strategizing techniques to assist Preston. I learned mostly through trial and error and, trust, there were several errors before I got it right. Every time, I hit a roadblock, I felt like I was drowning in my tears. It was fight or flight. Those tears helped me choose “fight” EVERY SINGLE TIME! Each teardrop shredded away the pain in my heart and the worries in my mind. They became my shield of strength. I was able to see a solution to my problem. Crying has helped me grow stronger and wiser. It’s rejuvenated my soul and gave me motivation to push through.

Recently, we’ve encountered our most problematic periods. Preston is going through puberty. For years, I was told that raising children on the spectrum can be extremely strenuous during adolescence. I thought I’d be ready but none of the research I gathered fully prepared me for the emotional roller coaster. There are moments where things seem grim. That’s when I’m at my lowest and that’s when I weep until I fall asleep. I’ve learned to appreciate the rain in the same manner. I find solace in rain. I enjoy sitting under shelter and listening to the soothing sounds as it falls. I learned how nature depends on the waterworks to grow.

My tears have helped me realize that in order to support Preston through this phase. It’s given me various perspectives after every meltdown. Also, I’ve realized I had to alter my actions…or more so my reactions. I can’t expect him to necessarily conform to me to the instructions I give him. I’ve had to interpret what he’s communicating even when I view it as being defiant. Maintaining a balance of discipline and understanding that some behaviors are a result of having autism is something I’m working diligently to master.

I feel crying is the Lord’s way of releasing hurt and clearing one’s mind. It brings me closer to Him. It reassures me that I can rely on Him at all times but especially when the odds are stacked against us. I’ve recognized that I cannot focus on how the world could view him but emphasize his value as a human being. He’s an asset to everyone he encounters. His innocent and positive outlook on life is something others can learn from.

Going back to my childhood memory, I can faithfully say that the Lord has always me wrapped up in His arms just my mom did that particular night. I work hard for my son to feel that same security during his rough times in life.

Sometimes it Can Get Cloudy

IEP meetings can be dreadful. Sometimes, parents can feel like it’s them against the school staff of professionals. We want to believe that everyone sitting in the room has one common denominator…the child. They want to believe that the discussions is in the best interest of the child. Sometimes, questions are posed in the parents’ minds.

Recently, I had a staff member continuously tell me “don’t get upset” about disciplinary consequences after my stance on my son not currently being in the least restrictive environment. Immediately, I thought how someone believed they could tell me what and what not to feel. After it being said more than 3 times, I began to hear “don’t be the angry black woman when your child gets in trouble” so I had to briefly address racial differences and racism in society. Now, I’m not accusing anyone in that room of being racist but the dialog hinted of racism; subtle or subconscious.

Being the only person of color in the room, I explained that I’m raising an African American son in a society when young Black boys are being shot and killed by the streets, vigilante neighbors, and police officers. My son looks older than his age (13) and is taller than the average adult male. The odds are already stacked against him and then we have to add autism to the mix. I informed them that I’ve had to spend more time teaching my child how to conduct himself in the presence of police/authority more than I’ve been able to have sex education conversations.

Race is a touchy subject and many don’t want to engage in the conversation unless they’re hiding behind a computer or smart phone. It was uncomfortable for me as well but it was necessary to say. Many of the school staff that engages with my son daily are mostly Caucasian women. Phrases like “we can’t control him” or “we fear for the safety of others and himself” have been stated to me more times than I can count.

I want to believe there isn’t subliminal racial tones occurring in meetings and conversations. I want to believe there is a genuine concern for my son and his well-being going forward. This blog isn’t to assume or imply that there is any sort of racism with the school staff but I can still acknowledge life experiences and media stereotypes plays a part when dealing with people from different races. In the end, I respect the staff 100% and I hope I have the same in return. These are the people I’ve entrusted to give my son a fair and appropriate education.

If You’re on Facebook…

I want to thank everyone that has taken the time to follow and read my blog. Although I’ve been doing this for about a year and a half, there are times when I’ve had not time to write my thoughts and experiences here, but I have a Facebook page that shares positive stories to help spread autism awareness and acceptance.

Here is our Facebook page info. Please click on the link and then “Like” to follow us there  as well.

THANK YOU FOR YOUR CONTINUED SUPPORT!!!

https://www.facebook.com/AvengersForAutism

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A Great Grandmother’s Love

I come from a large family. My mother is one of 10 children. They produced nearly 100 grandchildren and great-grandchildren. My grandmother taught us a great deal about life in many simple ways. It was effortless, but very effective.

I can recall the days of going fishing. I hated it but I learned a survival technique. She used to garden and had us helping out by picking greens, shelling peas, snapping green beans, and whatever else she told us to do. I learned how to grow food for my family. I spent countless hours in the kitchen watching her cook and learning her recipes.

She taught me the importance of having faith and praying. I know she prayed for each one of my family members even if we weren’t praying for ourselves.

The most important lesson I learned from my grandmother was unconditional love. She taught me how to love others without judgement. I told her my fears about becoming a mother. She said that nobody could love my baby the way I would and have faith in the Lord because He would see me through. Oh boy, she was so right!

As big as our family was, she always managed to find even more love in her heart for the babies. My grandma lived an hour away but traveling was difficult for her at times, but she was so excited to attend Preston 1st birthday party.

The night before Preston was scheduled for craniosynostosis surgery, my grandma called to talk. I believe she was actually praying over us though. She was the first person I called on the other side of his surgery.

The calmness in her voice was always soothing and reassuring that everything would be fine.

My grandma saw the best in everybody but she truly was Preston’s biggest supporter and cheerleader. He could do no wrong in her eyes.

My grandmother taught me about faith and how to see the good in people, not to be judgmental of their circumstances, and so much more. She was my everything. Last year on the day after my birthday, she went into the hospital. Two weeks later, she passed away.

Although I have some family members who don’t support or understand autism, my grandmother simply just loved Preston for who he is. She didn’t see him as a disability. She just saw her great grandson. I lost my rock but I’m so thankful for the morals she instilled in me as well the lessons she taught me.

There were moments I’d call and vent to her. She would quiet me with a sentence or two. One of her constant things she’d say about Preston’s behavior is that he had his head cut open and that’s he still the best he can be under the circumstances. She didn’t know about autism mostly because she was in her 80’s, but she refrained from any judgment. I believe it gave her more the reason to give him support by the best of her ability.

Everything she taught in me, I hope to do the same for Preston.

 

 

My Tears are Purple Rain

I was a young child the first time I saw Prince in concert. I had the great pleasure of seeing him several times throughout his career.  I was devastated when I received the sad news of his untimely death.

Immediately, I called my mother. She was the person who introduced me to the musical legend. I was deeply saddened and turned on his discography after hanging up the phone.

I put it on random play. The first song that came on was “Let’s Go Crazy” from his Purple Rain album. I began crying. The music spoke for itself.

I thought about an interview he’d done with Tavis Smiley. He spoke about having epilepsy in his early childhood. He spoke about a conversation with his mother. He told her that an angel told him he wasn’t gonna be sick anymore. At that time, my son having seizures. I recalled his disclosure gave me hope that my son would not have to live a lifetime with epilepsy when I listened to “The Sacrifice of Victor”.

Prince’s son, Baby Gregory, lived one week and died from complications of Pfeiffer syndrome, genetic disorder characterized by the premature fusion of certain skull bones, also known as Craniosynostosis. Preston had surgery for craniosynostosis just over 10 years ago. He was diagnosed with a different type. The night before the procedure, I was terrified. We decided to have a family night of dancing after I heard “1999”. We had a blast and it certainly helped ease my nerves.

I adored him for his music. I appreciated him for his humanitarianism. I identified with a few of his most personal trials. Certainly, his death has affected my life.

This blog could be too long if I talked about all the songs his Purple Majesty created and how they’ve shaped me. So many are a definitive part of the soundtrack of my life. I grew up on it. It helped me through a difficult pregnancy. It inspired me when I was down. It gave me new insights on life and sometimes it simply provided the background to a good time.

Prince, you will forever be loved and always missed. Thank you for helping “get though this thing called life”.

Don’t Believe Him…Just Watch

When my son was diagnosed with autism, I was told to prepare for many things. Professionals said that the chances of him being independent in adulthood was slim. His ability to do daily living activities would be limited. His cognitive skills would be impaired for rest of his life.

Years later, I’m proud to say he’s on the road to independence. He recently learned how to tie his shoes(to those without children on the spectrum, that’s a big deal). He can articulate his thoughts and feelings more than ever.

I’ve been teaching him how to count money, budget, and pay bills. Also, he’s learning how to cook, wash his own clothes (which he has a strong dislike for), and clean up after himself.

We are practicing filling out job applications and have done mock interviews.

I’ve learned that obstacles can be a determining factor to succeed. A victory is much more sweeter. He has no idea that some are certain that he’s limited in acquiring skills. He knows I believe him and that, in turn, has helped him believe in himself.

I have faith that he will accomplish his goals. Yeah, it’s gonna take extra preparation but it’s not impossible. Yes, I still worry about him being able to live on his own but that’s why I teaching him now. I want to give him a fighting chance. If it doesn’t happen, I’m preparing for that as well.

Being a parent in the autism community, I know this does not apply to everybody. That’s why I’m driven to help families have hope (in any capacity) for their children. In time, I’ll share that information.