This is our journey & our normal. #specialneeds #AutismAwareness #MentalHealthAwareness #advocate #mother

If you don’t have time to read this entire post, then just keep scrolling.

If you don’t have a special needs child or a child with a mental health condition, then you have not a clue what it’s like in our world. So don’t speak on something you haven’t no experience with.  And don’t put us inside the general population of general parenting, yea there may be some commonalities but not all the way. We do what we gotta do to help ease our own daily challenges and frustrations and we don’t need you to advise us on what you think works. I don’t care even if you’ve accomplished a degree in child psychology because it still doesn’t and will not ever compare or measure up to the daily challenges that we live with, battle through, and sometimes pull our hair out about throughout the entire day and wake up to the next day and do it allover again.  It’s really NOT as simple or as easy as we make it look.  Behind closed doors alot of us parents, caregivers, have a lot to navigate through.  So after your few minutes of assessing a situation, and your input is to just spank him/her or some other punishment that you think works effectively, well it doesn’t. 

Some of us parents, have it harder than others, some of our children aren’t able to verbalize how their day was while in another person’s care, and they become just as frustrated about things as others would, only their unable to verbalize it to us, so we are left to figure it out based upon other behaviors.  Some of us have children who can verbalize their day, and yet they have behavioral issues that are sometimes unexplainable and outbursts that occur for no apparent reason.  Some of us have children that have destroyed our property because of their aggression and anger but we don’t talk about that.  Some of us have children who appear “normal” by physical appearance but their bullied because of how they sound when they speak.  Some of us have adult children who are still wearing diapers and aren’t toilet trained.  Some of us want to do things just like any other average family, but it’s not possible due to other factors. Some of us can’t work because of the needs of our children, the multiple hospitalizations, ongoing procedures, medication management, feeding therapies, etc. 

Some of us are at a point where we’re fed up with others saying insensitive statements.  Some of us have chosen to become advocates for others.  Some of us are tired of the jerks in this world, but who isn’t.  Some of us just want to be able to have a full nights sleep without our kid getting up at 3am and rewinding their Barney tape.  Some of us just want a day where we can breathe and have some quiet time.  Some of us just want to the freedom to relax and not have to always feel rushed because we feel tense because we know our child is getting ready to have a public meltdown. 

Most of us lack outside, trustworthy, adequate, appropriate supports.  And therefore we don’t want to just put our child into the hands of just any caregiver.  Some of us have to walk on eggshells.  Some of us have to avoid triggers that set our kids off.  Some of us are drained and worn down.  However, we get through it, and we learn as we go.  We make it look like it’s no big deal. 

Another fact, most others don’t know, is this, many of us special needs families don’t have very many close friends, many of us are left without that village to help us raise our children.  Few of us have extended family support and compassion.  Many of us don’t get included or invited to your typical gatherings, so we stick to our own familiarity of “special needs events” so we don’t have to worry about being a “bother” to others, so we don’t have to deal with the stares, or hearing whispers and laughter at us and about us, not with us or together.  Ask yourself this, how often do you see any special needs individual out in public on a day to day?  Like when your at the mall, in the grocery store, or dining out at a restaurant?  To be honest, unless our child is “higher functioning” than you don’t see any of us. 

There are so many different terms and labels and categories that in my own opinion and it’s become white noise to myself.  None bother me anymore.  I’ve heard: “handicap, disabled, delayed, special needs, downs, autistic, non verbal, high functioning, low functioning, and they fall under the spectrum” and that’s just a few.  In anycase, Our normal is “our normal”.  Understand this, years before we even probably had a thought of bringing forth children, we didn’t forsee our future like this.  I don’t think any parent has ever envisioned what it would be like to raise a family with a child that will require extensive round the clock supervision and care well beyond adolescence.  

If we’re all unique, all different, not one of us the same, than who are you to say, our children don’t fit in.

I think if I’m honest most of us special needs parents had visions of having a child who would be considered the “typical” child who is self sufficient on an independent capacity and can work a full time job, play regular sports, and possibly move out and get married one day.  Well the truth is, for some of us, our journey has taken us a different way, and that is no longer our vision.  Because it’s truthfully unrealistic.  All I’m trying to say here is this, don’t be so quick to put your mouth upon what “you’d do if that was your kid”.  And I do know this, I’d like to believe that all of us parents, absolutely wouldn’t change a thing about our child now that they’re here and even with all the challenges. 

We’re doing the very best we can to keep them educated, safe, loved, cared for, nurtured, disciplined, corrected, and encouraged, inspired and respected.  So please the next time you’re out and you see a situation where you might normally be so quick to throw in your 2 cents, instead remember reading this.  And if after all this, you have an attitude of “that’s their problem or I don’t care they still need to….” Or something to that affect, than your just a cold hearted individual who lacks compassion and most of all you lack trying to understand.  All you see is what’s occuring in the moment.

Thanks for those who will respect what I have to say.  And if your a negative Nancy, keep it to yourself and just know this, our truth is our truth, our journey is our journey, our normal is our normal, and our experience is what makes us experts in what we have lived to tell others who are just beginning their journey as a special needs parent and might be feeling confused and hopeless.  There is hope in Jesus and there is support and advocacy out there. 

I’m just one mom who speaks on behalf of some others.  I’m just brave enough to write and share what some still may not have the courage or feel the need to say.  I’m just a mom and this is just a small part of my journey with motherhood and parenting.  Be blessed! -Erika

Become involved with Mental Health Advocacy. #ENDtheSTIGMA #MentalHealth

Hi Everybody,

As many of you know, May is Mental Health Awareness month. And many of my followers should know by now that I’m very passionate about mental health advocacy. You can read my other articles to find out why and how I’m involved.

Last year, in 2019, this campaign was a huge success with several supporters from friends, coworkers, and people across the states. This year, I’m hopeful it will be just as successful. In this article, you’ll be able to see just a few of the people who supported during last year’s campaign. And you’ll be able to get a visual of what it’s like to wear such a powerful message on a t-shirt.

Each and every single time I’ve worn my shirt out in public, I’ve always received a compliment and asked where they can get one, well now is everyone’s chance to get their own! You can order here! (Remember the design is slightly different from last year’s.)

This year in 2020, I’ve decided to launch another awareness campaign and you’ve got a few different options to choose from at reasonable prices. The sizes range from youths small to adult sized 4X. Here is the link which will take you directly to the custom ink campaign page. This campaign is set to run for just 4 weeks, so once it closes no more orders will be accepted.


So go ahead and order your gear today, and get it in time for May! But you can wear it any day and this is a great way to help spread our message to END THE STIGMA! It’s also a great way to help honor & show our support to those who are in this fight every single day!

Please feel free to share this post within your community of followers!

Thank you for your support & much love to ALL! -Erika

Operating in my purpose! While helping others. #Journey #Advocacy #MentalHealth

Hi everyone!

I’m super excited to announce my latest achievement in completing NAMI’s family-to-family support program! This was a 12 week course. But we managed to finish in 11!

Next up, I am registered to become trained on facilitating their Ending the Silence program! Which is exactly what I am passionate about. This program is geared toward teens and youth. It is designed to educate and bring awareness about mental illness and mental health. I’m so excited to become official in the coming months. I’m passionate about this program because it hits home for my family and the experiences we had as my son battled his illness while in middle school, high school alone and isolated. We were his only trusted support system. Outside of our home it was kept under wraps because of the shame, stigma, and fear. So I am using my journey to give insight to others.

It is all strictly volunteer based. So if others are looking to become involved you can go to nami.org and sign up to become a member or apply to become a facilitator with your local affiliate. NAMI has many affiliates in various states across the nation.

I challenge you to do your part to help create change and end the stigma!

Thanks for the continued support!

Another small piece of my world as Erik’s mom.

  1. FYI, just because an individual is NonVerbal. It does NOT mean they are deaf & you need to raise your voice, nor does it mean they are unable to comprehend given instructions.

There was once a time in my own son’s life that he did not speak. His development was at a different pace than that of his peers and other children his age. Heck, we didn’t even know if he would ever be able to walk or talk. But we had hope that God would answer our prayers.

This was him at his second Christmas, just learning to sit up. Boxing Producer, Don King, called us that morning to wish us a Merry Christmas, because he had learned about my son’s hairdo. That was a memorable moment in time.

It was around this time that his growth and development began to show delays in his physical capabilities along with his lack of speech. So instead we began to learn sign language by watching VHS tapes that was provided by his in-home occupational therapist.

I made sure I provided him with the best possible opportunities to gain strength through his upper extremities with hopes that he would one day walk.   I had him in therapy for speech, OT and PT.  He began school at the age of 3 in a wheelchair. That was a scary time for me. I cried that first day of sending him to school, following the bus all the way there.  He was unable to verbalize to me or others. Not able to advocate for his own needs and still in diapers.  Just some simple signs, like “more”, “eat”, “thank you”, and “done”. If he were to have a bad day, how would he be able to tell me? If someone were to mistreat him how would I find out?  All these terrifying thoughts ran through my head.  It took time for me to stop popping up at the classroom and calling nearly everyday.  He had a nurse ride the bus due to his medical history of heart arrhythmia. He also had an IEP for his special needs and accomodations for learning. He wore a helmet to protect his head because he had began having seizures, but they eventually subsided with lots of prayer.

Those were his younger days of elementary school. He got keep the same bus driver all the way through his junior year of high school. Amazingly, she became known to him like family.

I believe he was around the age of 5 when he finally began to walk independently but still with someone nearby. He transitioned from sign language and pointing, to expressing a few sounds, and with much therapy eventually he began verbalizing with words. His speech was not clear or concise at that time, but to us, we knew what he was saying (most of the time). He had come a mighty, mighty long way from where his life began and he would continue to reach milestones as time went on.

His name is Erik. And he’s my son whom I love dearly. He loves Jesus and he acknowledges that is his Savior, literally and spiritually.

My son is different just like anyone else. Unique in his own way, and enjoys his life to the fullest. He isn’t ashamed to be who he is. And he does NOT see himself the ways others do, as having “something wrong”.

He is 17 and he still enjoys watching PBS kids, Disney pixar films, and the wiggles, Barney and child rated shows. He is all about daily routines, and enjoys eating the same foods. He is a creature of repetitive habits and he loves socializing with others.

It’s highly likely he will still be watching Monsters Inc, Toy Story, Finding Nemo, and other movies even into his adulthood. He likes to rock back and forth while sitting. And he absolutely loves to praise and worship the Lord.

 

He enjoys attending church and praying on the microphone. Erik is one-of-a-kind, hard-to-find, unique as a jewel.

He is in his senior year now, and was nominated as “Lord of the day” for his Homecoming Royalty. Although he is viewed and often labeled as having “special needs” he is very popular and well-known in our community. Let’s just say he is very confident and makes his presence known wherever we go.

We do our best to keep him active and he enjoys bowling, footgolf, dancing. He also participates in basketball and cooking classes. He has won bronze, gold medals for his regionals competition for Special Olympics in bowling and basketball.

Erik and Regan at Regionals.

Thank you for taking the ride along my parenting journey once again. And for allowing me to be his voice. My life wouldn’t be the same if he wasn’t who he is today. And I could care less about the naysayers.

Because I can’t “change the people” around me so I just “change the people around me.” -Erika

 

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