I’m Back

I know I’ve been gone for a long time. Life duties came first. We’re going through the adolescent phase of life. There’s been some great moments and some not so great moments. It has been hard to sit down and blog about it.

I needed a break..kind of a detox. I eat, sleep, breathe autism. I’m a parent first but I’m also an advocate. I had to take some down time for myself. I’ve been keeping up with my followers and readers as much as possible. Additionally, I thank everybody for your support.

There will be more blogs to come very soon.

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.

Person with Autism vs Autistic

Lately, I’ve the noticed there’s been some discrepancy on how to refer to someone with autism spectrum disorder. Some refuse to use “autistic” when talking about or to someone with autism. I used to be one of those people. I believed that using “autistic” was descriptive AND definitive. I considered it to be an adjective. I backed my logic by comparing it to someone with cancer. I thought one wouldn’t refer to a person battling cancer as a “cancerous person” but that’s comparing apples to oranges. To be clear, I was never offended when a person used “autistic” but I preferred not to.

Recently, I’ve read about how many self-advocates would rather be called autistic than a “person with autism” or “on the autism spectrum”. Soon after, I began talking to various adults on the spectrum. I learned that many referenced themselves as autistic without any hesitation but others preferred to be a “person with autism”. Those who didn’t like being called “autistic” was because they felt it referred to being disabled. They don’t believe autism is a disability but rather different.

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Those who preferred being called “autistic” was mostly in part to feeling that their diagnosis didn’t define them. Yet, they recognized it is a part of them. It’s no different than me saying I’m an African American woman. African American describes my race, ethnicity, and culture. Being a woman describes my gender. My son refers to himself as “having autism” and he doesn’t feel any shame about it. He knows he’s different but he doesn’t want people to treat him differently because he has autism. He wants to recognized for the person he is.

In conclusion, using “autistic” or “person with autism” are both acceptable. It’s a matter of preference. If in doubt, it is perfectly okay to ask. Both DESCRIBES the person, but neither DEFINES them.

One Love

As a single parent, I struggle to find free time for myself. I don’t go out much because there’s a level of isolation and trust of who could care for my son because he, sometimes, have meltdowns. For the past few years, the ONLY break I get is when my mother opts to have Preston visit her during the summer in Arizona.

When Preston is with her, it affords me the opportunity to just be Keisha. Yes, I miss him (we talk and Skype frequently) but I enjoy my me time. The day before he was heading to Arizona, I was blessed with something that meant so much to me.

Those who know me are aware that I’m a super fan of two groups from Boston…New Edition and New Kids On The Block. Now, I’ve had great meetings and conversations with New Kids but it was my lifelong dream to meet New Edition.

I remember the hours of practice of learning the various dance routines to their songs but I believe my all-time favorite is BBD’s “Poison”. Preston laughs at me every time I do it at home.

Through me, Preston has become a New Edition fan. He loves many of their songs. Often, I’ve heard him singing and “discovering” different songs on YouTube. I’ve had to download New Edition/BBD songs to his phone.

I’ve chatted with various members of New Edition via social media. There is a personal connection with NE member, Ronnie DeVoe, because autism is a part of his family. He has used his voice and celebrity to increase autism awareness.

Recently, I saw a Facebook post about the DeVoe family granting some parents of children with autism a night out to enjoy themselves. It included 2 tickets to a New Edition concert. I submitted my contact information and to my surprise, I was selected by Mrs. Florence DeVoe (Ronnie’s mother) to go to the New Edition concert and have my picture taken with Ronnie DeVoe.

I was uber excited! I anticipated the phone call from Mrs. DeVoe. For days, I rehearsed the conversation in my head because I didn’t want to babble. I was nervous to speak to the mother of Ronnie DeVoe. The day she called me, I forgot everything I wanted to say. I was in disbelief that I was speaking to Mrs. DeVoe. She was so nice and sweet even though I still babbled.

On the day of the show, Mrs. DeVoe instructed me to inform her if I had any problems. Unfortunately, some problems did occur. The venue security gave me different information for the credentials that was given to me along with the tickets.  I was hesitant to call her but I did. She was extremely helpful. I was simply amazed of how kind she was when I talked to her. Again, I really didn’t want to call her. I felt I should be grateful enough for the concert tickets.

The concert was spectacular. I danced, I sang, and took lots of pictures. Every time, I see New Edition they get better and better. I’m fortunate to have been a witness of their evolution. In my opinion, they’re the ONLY group to be successful as a group, solo projects, and another group…they’re the ultimate supergroup!

In the end, we got backstage access but we weren’t allowed in the room with the group yet. We were told to wait. We patiently waited. Shortly after, we stood there as Johnny Gill and Ricky Bell briefly greeted us as they headed to their vehicles. Then, Michael Bivens and Ronnie walked out. I questioned if they were leaving and my moment of a lifetime. I couldn’t lose it so I walked over to Michael and Ronnie. Mike was so cool. He smiled and hugged me!

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I had to let Ronnie know that I was a guest of his mother’s. He quickly said “you’re Keisha?!” I was surprised he knew my name. I felt so special. The same way his mother, Mrs. DeVoe, made me feel. Quickly, I thought his parents did a wonderful job raising him. He hugged me and was so gracious. I told him how Preston made a video to show to him. I couldn’t find it fast enough so he told me to forward it over to his mother along with the picture we just had taken on my phone. He tried to get Mike in another picture but he had other fans talking to him.

The night didn’t go exactly how I pictured it but I still had a ball. The main thing I feel is that I’ve loved New Edition since the first time I heard “Candy Girl” in 1983. I’ve gone to several concerts in the course of my life. They never disappoint. I can get lost in their music because New Edition is a great portion of the soundtrack of my life. New Edition allows me to be just Keisha. I can be a “Candy Girl” 🙂

If only for that one day, I felt so much love and support from the DeVoe family. Never did I think that autism would tie our families together. I’m extremely proud of their decision to contribute to assisting families with autism. I applaud the DeVoe family for everything that they’re doing and will do in the future for the autism community. They are an exceptional family. I’m appreciative of their helping to increase autism awareness and acceptance. I believe they are a blessing in my life and will be to many others.

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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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