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.

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.

 

 

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.

Taking Action

Life is filled with obstacles. Everyday, people face roadblocks. We all go through trials and tribulations. Some experience soaring highs whiles others go through extreme lows.

The emotional and mental roller coaster of raising a child on the spectrum is not for the weak. We’re human beings that are automatically thrown in the boxing ring. We have to fight for the rights of our children. Our opponents come from various groups. They can include doctors, therapists, school administration, insurance companies, society, and even family members.

I’ve gone up against all groups mentioned and then some. I’ve had no choice but to advocate for my son. Some seen him as just a case or diagnosis. Others, genuinely didn’t have his best interest at heart. Very few took the time to understand my son and his needs.

I struggled with what to do and what not to do. There was trial and error. I basked in the success and worried about the failed attempts.

Many times, when my son would have a meltdown, I tried to stop them. I knew spectators were judging my parenting skills. During family gatherings, it wasn’t any better. I received many unwarranted suggestion on several occasions.

The falling out on the floor, stomping of the ground, or throwing things (all while screaming and shouting) was hard to handle. I tried ignoring them or attempted to remove him from the situation along with other techniques. Sometimes it worked. Most times, it didn’t.

I learned how to listen to him with more than my ears. Now, I know that may sound crazy but I’ll explain. Babies cannot speak. We listen to their cries but we’re also observing them to pick up on their physical responses. I learned to use a similar method for meltdowns.

One day, Preston had a severe meltdown while at home. I was watching TV and he was playing nearby. It appeared out of nowhere. I was caught off guard. I felt frozen. Thinking…thinking…thinking. I could not respond to him in that moment but I closely observed him. Why was he screaming? What was wrong?  That’s when I heard anxiety and frustration in his voice. Then, our eyes locked. What was he trying to tell me? Suddenly, I sensed he wanted to feel love and security. He wanted my attention. I wrapped him in my arms and he began to calm down. Minutes later, he was able to verbally communicate to me what was bothering him.

Learning his various ways of communication helped me advocate for my son in ways I never thought I could. In turn, it helped get him services that were beneficial to his well being. He’s overcome so many odds and, for that, I’m extremely proud of him. He doesn’t see the obstacles. He’s simply learning how to navigate through life. I cast his worries onto me. My goal is make the mountains into boulders, if not pebbles.

Preston has taught me about overcoming the odds by facing your fears. Years ago, my brother told me he envisioned me going across high school and college campuses speaking about autism. I told him he was crazy. I used to have panic attacks when public speaking. Well, I now have to retract my statement.

While at Eastern Michigan University, I took a Human Diversity/Social Justice class taught by a brilliant professor. This professor is an extraordinary woman who’s done a tremendous amount of work for social justice. I met someone that would change the course of my life. She was a guest speaker. Patricia is a vibrant, hilarious, and strong woman who doesn’t let obstacles stop her from enjoying life. Also, she has a beautiful eye for photography. I connected with her and I came out of my shell in that moment. Now, my advocacy for my son laid the foundation but her presence and her story inspired me to do more.

Now, I’ve been invited to speak in the same class about our life with autism. I almost declined due to fear. My son has inadvertently taught me to face challenges head on. Yes, I still get nervous but it’s becoming more comfortable to do. My current challenge is how transparent can I be. I respect my son’s right to privacy. I don’t want to discuss anything he doesn’t want to share. In fairness, I’m speaking about his life. He’s right by my side at every engagement. He loves it! He likes the attention but I’m almost certain he enjoys leaving early from school as well.

I’m eternally grateful for the experience to share our story; the good, the bad, and the between. If not for the unexpected chance to spread autism awareness, I would not be as motivated to do more in the autism community. We are working something that we hope will be a benefit to those on the autism spectrum.

This journey has taught me the real simplicity of life. Be thankful for everyday. You can’t have the good without the bad. How else would you relish in the happy moments?Enjoy special moments with loved ones and grow through the hard times.

Preston and I have become closer than ever. Together, we’ve tackled challenges. We’re ready for whatever lies ahead. We’re a team and we always say “Teamwork makes the dream work”. To us, family is paramount.

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He Will…

He will be fine. He will experience happiness. He will have a fantastic support system. He will enjoy life and all its possibilities. He will surpass many doctors’ expectations.

He will always collect all things Iron Man. He will create special masterpieces with Lego sets and the Minecraft video game.

He will tell me his dreams and plans. He will go on believing in himself. He will leave a life-long lasting impression on others. He will entertain people. He will make others laugh because his is so infectious. He will light up a room with his smile.

He will conduct himself accordingly…most of the time. He will have times when he displays impulsive responses. He will continue to work hard minimizing meltdowns.

He will receive an adequate education. He will be more than a label. He will NOT be a statistic. He will NOT be on the School to Prison Pipeline. He will NOT go to jail. He will NOT be in the next viral video of a police shooting an unarmed black male.

He will learn self discipline. He will have structure. He will learn to make lifetime friends. He will become part of a team. He will have a sense of safety and security. He will have goals. He will accomplish them. He will gain independence. He will discover his passion.

He will date. He will know how to respect girls. He will have his first love. He will have his first kiss.  He will be exposed to heartbreak. He will find love again.

He learn to overcome obstacles. He will know to trust his instinct. He will know who to trust. He will forgive others when they betray him but he will NOT forget. He will make mistakes. He will learn from them.

He will have positive male role models. He will learn from them the proper tools going  into manhood. He will be able to count on these men for advice and guidance.

He will become a man. He will know that involves more than just getting older. He will know a man is measured by his character and virtue.

He take accountability for his actions. He will strive to be best he can be. He will NOT give up. He will NOT walk away when situations become too strenuous.

He will get married. He will be a loving husband. He will be a respected father. He will be a provider. He will make certain his children are high priority in his life.

He will reflect on his childhood and have a multitude of precious memories. He will remember the special trips and the incredible adventures. He will appreciate those who gave him guidance.

He will know who was there for him and who wasn’t.

He will be fine…without you.

BBA (Being Black with Autism)

I remember being so excited when I learned I was having a boy.  I’m such a tomboy so having a son was perfect for me. I dreamt of cheering him on at his football and basketball games. The ideas were endless of what I thought his childhood would be like.

In 2005, after recovering from craniosynostosis surgery, I read a newspaper article about autism. My heart sank.  The symptoms list described many of the things Preston did; lining up toys, made little eye contact, limited speech, preferred to play alone. I asked doctors if he had autism. My questions were dismissed. I was told his developmental delays would be improve in time.

Beginning in Preston’s preschool years, the behaviors became extreme. They were impulsive and physical. Although there was no real explanation for it, doctors wanted to put him on medication.  I refused. He was finally diagnosed with autism at the age of 6. Problem with is that is early intervention a vital. Preston missed out on valuable time of getting the care he needed. We had to play catch up.

Preston has always towered over his peers. His teachers have all been females particularly white. This can be problematic due to the cultural and gender differences. These behaviors mainly happened at school. Many times, I was told “we can’t control him” or “his behavior is threat to the safety of others.”  He was sent home. As a parent, those are hurtful things to hear about your child. I worked with the staff but yet I was still fearful of the authorities being called.

I was told a few times that they would have no choice but to call the police if I didn’t pick him up.

I’ve taught my son to call 911 in case of emergencies. I want him to be able to go to the authorities when necessary. Due to the tragic Trayvon Martin and Michael Brown situations(just to name a few), I’ve had to give my son the painful truth about what can happen when some officers have come into contact with black males.

I fear for my son because he’s on the autism spectrum.  Police have limited training in dealing with those with mental disabilities.  It breaks my heart with every video of police arresting young autistic boys (regardless of color). Some have been shot and killed by the police.

I worry about it because he can be aggressive when he becomes overwhelmed, frustrated or feel threatened. What happens to my son if he doesn’t comply in the manner they demand he should? Will they shoot him? I try to teach my son how to conduct himself in the presence of the law even though he’s still struggling with social cues and making friends. Children with autism are 6 times more likely to have contact with the police in comparison to peers who are not autistic.

My son is Black and has autism; one alone is a challenge but both can bring about devastating circumstances.

There was a time when the police called me about an incident that occurred at my son’s school. I explained to the officer that my son has autism. His response was “I understand that, but I was told he’s big for his age” and even suggested that I give them a call if my son’s behavior ever became too much for me to handle.  At this time, Preston was 9.

Why would I call the police on my 9-year-old child?

Not all officers are bad.  I know some excellent men(and women) on the force.  I want my son to know that the police are there to protect and serve.  Unfortunately, we have to discuss the bad outcomes that have occurred as well.

I don’t want my son to be the latest headline.  I don’t want to lose him to someone who, more than likely, will never see a day in jail for taking his life.

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