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.

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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Teenagers: The New Chapter

There has been a tremendous amount of work going into helping Preston. The initial diagnosis was bittersweet. I felt in my gut that my son was on the spectrum since the age of 2. Getting confirmation years later, I felt relieved and scared at the same time. What exactly does this mean going forward? Will he ever maintain relationships? Will he gain independence? What will become of his life?

I researched everything I could find out about autism. I educated myself on ABA therapy by taking notes and asking his therapist a plethora of questions. Preston has made progress in ways some professionals said he never would. I’m proud of him for that. He doesn’t see his diagnosis as a hindrance.

Well now, we are embarking upon the teenage years…oh boy!

Preston is facing his biggest challenge yet. In fact, his entire support team is along for ride. All teenagers deal with hormonal changes. All teenagers test boundaries. All teenagers struggle to find their way. Add all of that to difficulty with social norms and cues as well as expressing feelings.

Life is changing by the minute. Tactics that previously worked are now ineffective. You cannot put a teenager in timeout. Trust me, it doesn’t work but he does have a cool down spot in our home. Some behaviors can be ignored while others require a different approach. Taking his things away has probably been the most successful tool. He absolutely despises losing his favorite items.

The changes that are occurring right now doesn’t necessarily warrant removing his material possessions. You can’t fault a child for not having the ability to fully understand the physiological changes which occur during puberty.

We’ve had “the talk” multiple times. He appears to be uninterested but it’s imperative that he knows about sex and what comes along with it. There’s no doubt he likes girls and yearns for a girlfriend, but he struggles with all that it entails. His thought process about sex is very straight forward.

This is a confusing time for Preston. He knows he can converse with me (and his support team) about anything but I’m certain he doesn’t always know what to ask. My approach is to provide information in small bits and pieces. I don’t want overload his brain all at once. I always ask if he has any questions. Sometimes, he has a cluster. Other times, not a single one.

He’s still learning to form friendships; most of which are at school. When he feels a peer isn’t being a “good friend”, it can pose problems. It hurts his feelings and he becomes irritated. Unfortunately, he tends to express it with aggression. That has led to disciplinary actions within school.

Testosterone levels increase with puberty and that has impacted his mood. Like most teens, he has mood swings (I’m searching for various physical outlets to channel his aggression). He’s a kind and loving person but he’s easily frustrated when he can’t communicate his feelings. In fact, he often says he doesn’t like his “angry side” and wants to be the “good guy.” By nature, Preston is a sweetheart and is very helpful towards others.

It breaks my heart to see him struggle finding his way and I worry about the negative possibilities. He doesn’t want to make bad decisions and I attempt to use them as teaching moments so he doesn’t repeat the wrongs. Since his diagnosis, we’ve learned to deal with obstacles as they appear. I’m hopeful we’ll be able to look back on this like his other accomplishments.

I have faith that this too shall pass. But until then, wish us luck!

 

 

We’re All in This Together

The other day I was reading an article on Facebook. It was about an adult on the autism spectrum who had defied the odds. As a mother who often worries about my son’s future, it gave me hope. Once I began to read the comments, I learned there is division among parents with children on the spectrum.

Some parents expressed their concerns about non-verbal children not receiving enough attention in autism community. One said many heartwarming stories are not about those are “truly autistic” and even went as far as saying Aspergers should not be included on the autism spectrum.

There were others in agreement with this parent. I clicked on various articles and discovered similar banter in the comments section. I was in shock.

I had no idea about the growing gap between parents of non-verbal children and parents of verbal children. It saddens me to know that some parents think that verbal children are less autistic. The autism disorder spectrum is a wide range of behaviors, social skills, and language development impairments.

Lately, it appears to be the great debate between “low functioning” and “high functioning”. Those classified on the low functioning end require more services and care. They are less likely to live independently. People who are more verbal and have some social skills are considered high functioning. Also, they have a greater chance to live on their own.

Yet, all parents have the same fears for their children’s futures. A common worry for parents is what should happen to their children once they’re no longer on this earth. All parents want what’s best for their children.

To say that one’s life with a more severe autistic child matters more than one with a child that displays moderate or mild traits is unfair. Raising a child on the spectrum can be arduous and inspiring at the same time. Services and treatment has been beneficial to all those on the spectrum. It’s extremely rewarding to see any child make strides in their life.

Many non-verbal children have developed language skills. There are children who have language skills but still struggle with social skills. Many of them have the ability to improve on non-verbal social cues. Complaints that one group isn’t “autistic enough” in comparison to another group on the spectrum is simply wrong.

In some situations, children who are verbal are often labeled as “unruly” when they have a meltdown. Often, they don’t receive the compassion like those who don’t have the language skills. This usually comes from those who don’t have relationships with people on the spectrum. I wouldn’t expect this from other parents raising a child with autism.

Ultimately, it is human nature to have a desire to engage with with others. Whatever the barrier is to accomplish that goal can be problematic.

All people on the autism spectrum deserve the services they require. All people on the spectrum have the right to be treated with respect and dignity.

There is enough mistreatment and misunderstanding coming from some outside the autism community. We must band together as a community and support ALL those living with autism…regardless of where are placed on the spectrum.

 

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.