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.

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.

 

Meltdowns: More than a Typical Tantrum

The other day, I watched a video posted on Facebook. The tagline was something like “what happens when have spoiled kids”. My heart ached as I watched this mother struggle yet maintain calmness during her son’s physical aggression.

What was more troubling was the comments made about the boy’s behavior. Many said that he should be beaten or he knows better.  I’ll admit the behaviors were bad. He was hitting and using profane language.

I thought about my child’s past and present behaviors.

In the beginning, Preston displayed extremely aggressive behaviors. It began in preschool. He didn’t always hit people but he threw objects in class. By 1st grade, he was knocking over desks and tossing chairs. For years, constant calls from teachers and countless meetings.

I made every effort to figure out why he was doing these things. I tried everything to discipline bad behaviors; timeouts, spankings, behavior charts, taking away favorite things. Some of them worked while others made the behaviors worse.

I received stares and judging glares from people when Preston had meltdowns in public. At first, I was embarrassed. I noticed people were looking at the both of us in disgust. On his end, I thought people were thinking he’s an unruly child. For me, it was easy to believe they thought I was a parent who couldn’t control my child’s “bad” behavior.

I had to get out of my head and focus on what/why my child was acting out. I had to learn his triggers. Still, meltdowns were difficult to prevent. Many of his caregivers didn’t make efforts to learn them.

At school, he had to be removed because his behavior would be deemed threatening to himself and others around him.

Some family members chose to use corporal punishment as a main form of discipline.

Meltdowns are different from tantrums. Children having tantrums are doing it to seek attention. They are careful not to hurt themselves and others.

In cases of a meltdown, children with autism have no control over their behavior. In some cases, they can hurt themselves and/or other around them.

Meltdowns are tornadoes of emotions; anger, frustration, anxiety, and overwhelmed.

It is important to know what to do and not to do during a meltdown.

Remove the child from any area that can threaten anyone’s safety. Avoid access to objects being thrown. Sometimes, physical restrains are needed. In the past, I’ve had to physically restrain Preston. I would wrap my arms around him until he calmed down. That wasn’t always easy to do because he struggled to get away from me but it helped him relax.

Be patient and keep calm. Nobody can stop a meltdown once its started. You have to wait it out. They can last for a few minutes to over an hour.

It is necessary for the caretakers to recognize and assist in diffusing the negative behavior. You have to learn what triggers these types of behavior.

Distraction is best for young children.

It is best to teach children what to do when their triggers begin to surface. Breathing techniques worked well with my son. Also, I taught him to verbally express his feelings. That doesn’t always work but it is another technique that been beneficial.

Don’t engage in conversation with the child during a meltdown. They are not hearing what you’re saying and it’s only adding to sensory overload. The behavior can be discussed once the child is calm. It be used to teach them what can they do differently.

Once you’ve learned what their triggers are, many meltdowns can be avoided. You have to be consistent. With practice and patience, children will learn to gain control over their emotions. The ultimate goal is to get the child to learn acceptable behavior patterns before or by adulthood.

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