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

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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

My journey with Mental Health & Special Needs advocacy. #MentalHealthAwareness

Hear me out…then if you agree please share it to support my journey with advocacy & my truths as I know them. #MentalHealthAwareness

I’ve learned along my journey with advocacy for Mental Health & Special needs, that my truth may not be yours but it’s my lived experiences that make me an expert in what I’ve encountered as a mom & caregiver. I’ve learned that I can no longer expect others who are either wilfully ignorant or misinformed or inexperienced, that ⬅”these” will likely NEVER get understanding or be able to accept the facts as I know them, which are: Mental Illness isn’t a demon that you cast out, nor is burning sage or other witchcraft going to help “fix” this. Mental illness is a medical condition and it is a brain disease, that impacts the ways a persons brain functions.

Individuals with developmental delays, down syndrome, special needs, autism, to name a few, are not cursed, and their family isn’t cursed. My own son has developmental delays and he is the most loving, kind-hearted boy, he loves Jesus! What he has isn’t contagious & he doesn’t deserve to be looked at like he himself is a disease just because he walks different and talks different. No one deserves to be mistreated. People are so quick to label and put stigma onto those living with mental health conditions and special needs conditions. They tend to think the family is cursed or in some cultures they will disown them. Mental illness is not evil. Mental illness is an unfortunate disease of the brain. I won’t expect anyone to understand this because it’s not their lived experience, they just watch tv or what media hypes up without complete and accurate education. In other words, unless you have experience what its like raising a child with a mental illness/condition or special needs than I no longer expect you to get it. Just as much as the flu hits you and you get very sick with symptoms, is similar to that of how someone can become sick with a mental health condition, it’s not something we want, it’s not anything we saw coming, but mental illness(es) are NOT contagious. They are NOT a spirit that transfers to someone else for all you deep spiritual people. They (mental illnesses) are hereditary and known to skip a generation but not always. They are treatable and they are medical conditions. Have you ever sat down and tried to talk to someone about something & their response lets you know within the first few words that this conversation is going no where. So you just stop. Let me just say this, unless you’re willing to learn & educate yourself, then don’t form an opinion based off what you heard or what you saw on a TV show or movie. Unless you live this day in & out, you can’t even begin to know what it’s like to feel isolated, scared, hopeless at times. Its especially hurtful when you can’t even turn to your own family because they just don’t get it. Let me just say this, you might know of someone who’s living with a condition, or you have a relative, or you work in a clinic or at a hospital so you think you can relate, well let me say this, it’s NOT the same & I believe anyone who’s walked a similar journey as me, will agree.

My other son, was diagnosed with bipolar disorder & he is also the most kind-hearted, comical, genuine, respectful young man. He has a heart for God & he is overcoming his battles, he is a full time college student, he is a college student-athlete. He’s truly a warrior. All Glory to God!

And let me also say to some in the church, Stop running people off because you’re uninformed and unequipped to handle someone who has any one of these health diagnoses, and you ignorantly take them to the altar and attempt to cast out a demon, cuz it ain’t going to work, and you wanna know why? Because their ain’t no demon to cast out. Pray for healing to take place instead, pray for doctors to find a cure, pray for medications to have no side effects, pray for restoration and clarity, Pray for them to have the strength to go through. That’s what you can do. Offer support & offer love, these communities of people already feel isolated and ridiculed. I said this because you have no idea just how many people I have met & sat down & listened to their stories about how the church hurt them & ran them off. As a believer In Jesus myself, we must do BETTER!

We need to educate beyond the common mental health conditions of depression & anxiety, and beyond the “acceptable” conditions like cancer, diabetes, dementia, autism, ect. Hopefully you get my point. I’m not dismissing these conditions at all, just desiring more public awareness for Mental health conditions such as BP, bpd, schizophrenia, PTSD, suicidal ideation, ect. Which are all attached to stigma! We must eradicate stigma! People are out here suffering in silence! Wearing masks so good they fool their loved ones because they don’t want anyone to know what’s going on inside. They won’t get help because of fear of stigma! They have no one to talk to because others won’t listen. Their feelings are dismissed by advice being given instead. They feel misunderstood because when the one person they hoped would offer support, didn’t. Their scared and scarred. This is why when someone takes their own life, everyone usually says they seemed happy and didn’t know anything was going on.

My thoughts on evil…Don’t get me twisted there are people who are evil, commit heinous crimes, do pure evil acts, and then we find out through media that they’ve been declared “legally insane” or “mentally ill” which makes every single person who has a mental health condition/illness viewed in a bad light. Which in my own opinion creates ongoing stigma because it’s not all the details, most times we just read, “school shooting and shooter has a history of mental illness”. Their behaviors are influenced by what they feed their thoughts not simply just because they have an illness. And there are always a whole bunch of other factors that play a huge part in someones health declining. Usually it’s because they either aren’t receiving treatment, or they haven’t found the right treatment yet, or medications arent being taken or medications need to be adjusted, ect.

What I don’t agree with is putting everyone in the same boat. Everyone’s journey is different. Even people with the same health diagnosis can live with completely different challenges & experiences. So my truth may not be yours. But this is mine!

My truth is my lived experience while raising children with various health challenges, and I’m not cursed and I did nothing wrong for those who think so. My family is blessed beyond measure. God has chosen to give us this journey, this purpose to serve on this platform. God is my waymaker. Jesus is my Savior. God is my sustainer. God is my EVERYTHING. Thank you Lord! #MyJourney #MyTruth #MentalHealthMatters #Unashamed #SpeakYourTruth #BeKind #EducateYourself #RespectTheJourney

Lastly, here are some resources that could help save a life or help you learn more.

Mentalhealthfirstaid.org
Nami.org
NIMH.nih.gov
Blurtitout.org
Bphope.com
https://suicidepreventionlifeline.org/
Understood.org
https://www.navos.org/


Crisis Textline 741741 text (Home) 24/7
Suicide Prevention Line 24/7
(800) 273-8255
Pierce County Crisis Line
(800) 576-7764
24 hour crisis line
(866) 427-4747
Teen Link (6pm-10pm)
(866) 833-6546

Thanks again for being here. This was a post I wrote on my personal social media & wanted to share it here.

Be the voice they don’t have.

Parenting in my world is similar to that of some, but also very different from most. Raising multiple children with very different special health care challenges is a challenge within itself.

My world is very small and select. Meaning that I only feel comfortable and free when I’m within certain environments, with select people.

I think I speak for most other special needs parents, when I say, we are often misunderstood, sleep-deprived, full of compassion, overprotective, running on overdrive, and often found advocating for our children.

My life as a mom in my world, has consisted of many hospital stays, doctors appointments, sleepless nights, medication management, IEP & 504 meetings, therapy sessions for PT, OT, Speech, and counseling. None of these are what I envisioned my motherhood would be, however, it’s made my blinded eyes opened. It’s taken me down a path filled with unique experiences that I would not redo differently. It’s resulted in some of the most amazing stories of victory. It’s produced some of the most incredibly compassionate young people. And it’s given me a voice and purpose to inspire others. Last and most importantly, it has drawn me much closer to God than ever before.

I have a son with developmental delays who was born normal and healthy. His everyday life consists of the same routine. All the way from the food choices, to his choice of activities and tv shows.

I also have a son with bipolar disorder who graduated as an honor student and is currently attending a 4-year college. And I have a daughter who suffered from some mental health issues, and has juvenile myoclonic epilepsy but she is the most gifted, highly talented young artist and attended an art school. None of them fit the “stigmas” nor do they accept the “labels” that others attempt to put on them. And none of them have allowed their diagnoses or battles to stop them from moving forward in life. They each have very different journeys and yet they each share the same genetic makeup. Isn’t that something?!

What I would like others on the outside to know, is this. My children are just as human as the next person. They have a heart, brain, eyes, nose, limbs, and capabilities to share with the world just like anyone else. They also have flaws, shortcomings, emotions, behaviors and are still learning as they grow. My youngest might talk a little different, a little louder, walk with a limp, laugh when no one else is, rock back and forth while sitting, but he is who he is. And they are who they are.

In my small world of comfort, I have gotten to meet some of the most fun-loving, energetic, compassionate people. And some of them are nonverbal, deaf, blind, wheelchair bound, with obvious “visible disabilities”. And some of them have been through mental health battles which are considered “invisible disabilities”. ALL of which are NOT a contagious disease, dumb, stupid, unintelligible, without feelings, crazy or any of the other stigmas or labels that ignorant people choose to use.

These people’s lives have been touched, impacted, marked, changed, inflicted upon by a health care challenge that is beyond their own control. They are living very different lives just like you and me. They are all battling something every single day. Each one with a unique story to tell. Each with a very different journey and outcome. Each one deserves just as much respect, honor, love and compassion as anyone else who doesn’t have to live with any health challenges.

Some of us should take a moment and get to know the person instead of allowing stigmas and false representations to taint our insight, causing us to draw away from becoming better acquainted and informed of real life experiences.

End the stigmas. Stand with me against the negativity and harmful words and misrepresentation for mental health disorders and individuals with special health care challenges.

“Be the voice they don’t have” – Erika Brooks

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