The Autistic Life (Part 2 of 2)

Makasha, using my childhood as an example, what can parents do considering there are some parents who know their children are special needs, but instead, they discipline their children (smacking their face, spanking them for every small thing they do wrong, though it's due to the disability), thinking the discipline will bring children to obedience? 

 

Parents can only rear their children based on what they know and accept about them. In other words, if you know your child has cancer you will likely pursue medical attention. The same should be done when your child is diagnosed with a mental illness or learning disorder. You have to get the proper team in place to help your child.

 

One of the immediate things my son’s team worked on was helping me to decipher when his disability was causing him to be disobedient. Children with social disabilities should not be treated differently. It will cause problem in the home with the other children. Since every child is different, discipline should be customized to meet the child’s social, age and developmental levels while reinforcing the values you’re trying to instill. You can read my take on this here.

http://makashadorsey.com/2014/04/d-is-for-disability-versus-disobedient/

 

Why doesn't insurance pay for this (and why the school system calls these kids problem children)? 

 

We’ve had the benefit of good insurance so I don’t know a lot about why insurance does not pay. In many cases, insurance don’t pay for care because the bill coding from doctor’s offices are inaccurate. In addition, some practitioners offer vague diagnosis which will also prevent payment.

 

Both autism and Asperger’s are covered by most insurance companies. However, certain treatments are not. Therefore, your medical provider should work with you on finding treatment options that are covered by your plan or work with you to help get an exception approved so that your insurance company will pay.

 

The school system is an entirely different scenario. As it is, the public school system was not created to be able to accommodate children with disabilities. For many years, children with disabilities were either sent to mental institutions—both private and public—or kept locked away from family and friends. In actuality, some people thought these children and adults were possessed by demonic forces. Thank God for modern medicine. Since the school system was not created to accommodate children with disabilities, they’ve had to play catch up in this arena.

 

I’ve never heard school officials refer to children on the spectrum as problem children. However, I have seen schools not equipped to meet a child’s needs and it creates a problem for the school, the parent and the child. Most counties have school choice programs for children with Individualized Education Plans (IEPs). If the school does not have support, try another one that does. As parents we have to shoulder the bulk of the responsibility is ours when it comes to educating our children. If you have to wake up thirty minutes earlier to get your child to another school, do it. If you have to downsize your home/lifestyle to home school a child who cannot matriculate in the classroom due to violent outburst, social anxiety or the such, do it.

 

Too much responsibility is put on the public school system. Your child is your responsibility. Find a common ground or another ground to educate your child. There are options and sometimes you have to pay for them.

 

I would like to thank Makasha for chiming in on this. One thing she said when she was talking about the facts: Autism is oftentimes diagnosed along with OCD. I would take that a step further and say that if a child who's autistic (or "special needs") is being bullied (via physical, sexual abuse, etc.), PTSD will be discovered. That was the case with me (I was diagnosed with that in 2008). 

I mentioned a little bit of discrimination in Part 1, let me pick it back up from there. A lot of people (including me) that I went to school with didn't know I was autistic. But I knew deep inside that I was different. So, I was an easy target in school (and part of my adult life) for being used and picked on. Many people discriminate against children & adults with "special needs" due to ignorance or to just being mean. I fully understand that the world is all about "self" and stepping on people to better themselves.

I'd like to take a moment and share with you with what goes on in an autistic mind (using myself as an example). Many people will be able to identify and some may not, and that's ok. With me, a thousand thoughts flood my mind (and it's been like that since I was in pre-school). In fact, the things that stick out to me the most are as follows:

1. Music, songs & when it was released (if you know me, I'm very good with dates and I can more & likely tell you what was going on in my life when I hear certain songs, the year it came out, what grade I was in, and who wrote/produced the song).

2. Books I read. If you're not careful, you might find me reciting a children's book called Make Way for Ducklings (from beginning to end). 

3. Movie clips. I can tell you my favorite line from movies I watch.

I just mentioned a thousand thoughts, it's like that even as I'm typing this blog. One of those thoughts is that I'm going to forget to put something in this blogpost (smile). While I'm talking about the mental state, let me say this: for me, it's a struggle shutting my mind off at times. In fact, I've ran across a few blogs over the weekend that confirm that when we are in a quiet space, the mind picks up everything to think on (some good and some bad). What helps me is listening to classical at times & maybe some quiet worship to relax my mind. Reading helps (but it depends on what it is - sometimes what you read can appear in a dream or in your thoughts later when you really don't want to think about it). 

Now let's talk about my life with Aspergers. But first, let me give you a statistic:

1 out of 5 autistic children are physically abused & 1 out of 6 autistic children are sexually abused. 

I mentioned earlier when I posed a question to Makasha, that I was hit in the face quite often growing up (whether it was my parents or my uncle - same one who abused me). I can truly say, it made me rebellious and angry to some extent. But what I really want to focus on is this (and I'm going to fight tears saying this): in my life, I could do 5 things, but the one thing I would do wrong would be held against me for as long as I live. It would replay in my mind, or my parents would glorify my wrongs (people in social life would want to throw stones at me). Because I've been in trouble too many times, I am the type of person who seeks to make amends. Most of the time it's a dead end. Many of you who know me know that I apologize way too much. It's the conscience within me always doing something wrong, unintentionally hurting people that I so deeply love & respect. Like I said, my wrongs have been glorified growing up, so it's only natural to feel that way. In fact, it hurts more when I don't know that I hurt someone (or they just stop talking to me). Having been rejected as a result of my "special needs" state and abuse, I am thankful that I found stability in my faith. But at the same time, no man is on Gilligan's Island alone. 

What troubles me so much is when a person is suffering, they receive a finger pointed at them, but when the person pointing a finger is going through, the world must stop for them. It's been said to "seek first to understand." I guess it's easier said than done. I know many of us with "special needs" want to be understood, but we have been conditioned to understand others first. That can explain why we are very caring people and others tend to scoff at us and treat us like CRAP! And that's what society does at times, look at us as troubled children or even a liability to the health care system.

One thing that stands out to me is an incident that happened at home. My uncle came to live with us and I foolishly believed him when he said that he taught The Commodores how to write songs. My mother was taking a college class and she told her classmates this. When she told me she did that (I was about 11), I felt so humiliated. 

And this now leads into the next area I want to move to.

Aspergers & Depression

I can definitely speak on this first-hand. I don't like to see people hurt, but rejection for me is like taking my very life. In fact, my mind is happy about life and then when I feel rejected, my mind wants to escape life (this can even occur when I'm speaking or at a release party for my own book). There are some things in my own life, I can't even explain. 

This morning, I ran across this link (and I ask that you check this out as you read this blog):

http://www.adultaspergerschat.com/2011/10/dealing-with-depression-55-tips-for.html?m=1

As I was reading, I saw myself in many of them (especially #3). 

As I wind this blog down, let me say this: Suicide among kids with autism due to being bullied, and being sexually abused is increasing as the days progress. According to http://www.medscape.com/viewarticle/827794 66%of adults with Aspergers have suicide ideation. Among adults with Aspergers, those with depression are 4x more likely to experience suicide thoughts.

So why am I saying this? People with "special needs" need love, care & protection. They need stability, and a feeling that they're not rejected. Many times, they feel that society has rejected them. In fact, I have found that those who are "special needs" (to include those with AD/HD), are very gifted in the creative arts. 

Now, that I'm drained, you all be blessed today.

Blessings:

The Mayne Man

The Autistic Life (Part 1 of 2)

This is a blog I wanted to write 2 weeks ago, and I'll be honest, I really don't want to type this because this is painful to me in certain areas, but I know this blog isn't just for me. So I ask that you bear with me & stay with this through both parts. My heart has been heavy since this morning & I have had some moments where I have cried. With that said, I have to break this up into two parts because so much needs to be said (and I believe this will touch someone). 

When I first heard the word Autism, it was around 2008 when celebrities such as Jenny McCarthy & Toni Braxton were sounding the alarm (and praise God for that). I initially didn't think anything about it until CNN did a documentary on it. When I was observing the children's behavior (they had to be around 5 years old), I said to a friend of mine (who was sitting with me at a coffee shop as we were studying for the CPA exam), I can't laugh at that because that reflects my behavior on school. I asked my family if I was tested for autism and I received an emphatic NO, and you don't have it. Within my spirit, I knew it was a lie. 

Fast forward to 2011, when I was writing the dedication page to DDBS, I dedicated the book to those who have been diagnosed with AD/HD and/or to those who have any shade of Autism. For the benefit of those who don't know what DDBS stands for, it stands for my novel In my novel Deaf, Dumb, Blind & Stupid: Michael Anderson's Fight For Life. In this story, Michael is a child living with Aspergers. As a result of this disability, he endures bullying at home and at school, he's abused, placed on Ritalin and ends up taking his own life. If you notice as you read this blog, that sums up my life (minus the suicide). I didn't understand why I was making that dedication, but now I do and I'll explain. 

Near the end of 2013, I was looking at my psychological evaluations (when I was in pre-school & kindergarten) and I noticed a common trend: the word "echolalia" appeared and that my social skills & speech was impaired. Eye contact is also minimal. When it all adds up, it's Aspergers (which I suspected that I have back in 2011). It's on the autism spectrum, but it's not severe. I was clinically diagnosed that March of this year and I was relieved. 

I know life is hard for a child living with Autism (and for parents raising children with Autism). I am going to include Aspergers when I speak of Autism for this blog. 

As I continue this blogpost, I will ask fellow author Makasha Dorsey to share her thoughts on this (as she has a son with Aspergers & a short story in The Motherhood Diaries about life as an Aspie Mom). 

Let me give you some facts about Aspergers Syndrome so you're not completely in the dark. This is from their website: www.autismspeaks.org

Asperger syndrome is an autism spectrum disorder (ASD) considered to be on the “high functioning” end of the spectrum. Affected children and adults have difficulty with social interactions and exhibit a restricted range of interests and/or repetitive behaviors. Motor development may be delayed, leading to clumsiness or uncoordinated motor movements. Compared with those affected by other forms of ASD, however, those with Asperger syndrome do not have significant delays or difficulties in language or cognitive development. Some even demonstrate precocious vocabulary – often in a highly specialized field of interest.

The following behaviors are often associated with Aspergers syndrome. However, they are seldom all present in any one individual and vary widely in degree:

• limited or inappropriate social interactions

• "robotic" or repetitive speech

• challenges with nonverbal communication (gestures, facial expression, etc.) coupled with average to above average verbal skills

• tendency to discuss self rather than others

• inability to understand social/emotional issues or nonliteral phrases

• lack of eye contact or reciprocal conversation

• obsession with specific, often unusual, topics

• one-sided conversations

• awkward movements and/or mannerisms

So what was life like for me? I didn't have that many friends, partly due to my lack of social skills. Because I was challenged, I was bullied by certain family members to include physical, sexual & verbal abuse. I was placed on Ritalin and endured bullying in school. 

Because I was a special needs child, I felt as if I was beaten into normal (I was disciplined with the rod for things I knew were wrong, but more for the things I didn't know were wrong). In fact, when you look at someone who is autistic (or even someone who has Down syndrome or even Tourette Syndrome), you'll find a lot of their actions are not planned. They're impulsive. Now, I'm not justifying all of the actions I did as a child and an adult, I say that so that those who don't understand what entails in an autistic life. 

When a child is a "special needs" child, there's a strong chance that bullying will come from the home front and school life. How do I know, it happened to me. And as I became an adult, I have become more sympathetic to people (and for many, they saw it as a means to take advantage of me). But I know many people living this life will relate to this. Another form of bullying that takes place is discrimination. I think I can capture this from a clip from my novel DDBS (this is the scene where Janice comes up to Michael in school): 

Janice comes up to me in full-blown conversation mode: “My man has never gone through anything that you’ve been through. You’ve been neglected, and that’s probably why you get angry at sporadic moments, right?” I said yes. I don’t plan it, and I don’t like it when it happens, because I become very depressed and apologetic. This is partly why I’m in counseling.

But I questioned her, “Is this your main reason for dropping me, because I’m not stable? Does my counseling and my cries for help matter?” Janice doesn’t waste any time making it plain. She says even if her parents OK interracial dating or marriage, I have too many issues. She claims to know a lot of people who have problems and that she loves them “equally,” but she’s still trying to “wrap her mind” around the fact that she loves me the JACKED UP friend with a mental disorder.

Before I go any further, I would like to pause from my life for a moment and ask Makasha to chime in on this:

Makasha, can you share some facts on Autism from A Mother’s Perspective? 

• Autism does not mean unintelligent.

• Autism is often diagnosed alongside a mental illness or learning disability—Aspergers Syndrome with Obsessive Compulsive Behavior.

• There are children who are on the autism spectrum and then there are neurotypical children—kids society call normal. Who wants to be normal?

• Some children on the spectrum present no physical problems such as tip toe walking or clumsiness.

• Children on the spectrum need a safe place to be themselves.

Why do doctors give up on patients? 

Fortunately, I’ve never encountered a situation where a doctor has given up on a patient so I wouldn’t be able to answer this question. We’ve lived in 5 states since my son was diagnosed and have had great doctors and support teams each time.

As a parent my advice would be to find the right doctor. Your pediatrician might have worked great for your first two children but not so much with the third. Get the third child a new pediatrician who understands your child’s needs. You can’t get milk from a rock. Instead of blaming the doctor for giving up, be proactive about your child’s health. You are your child’s best advocate.

The same applies for adults. If you are not getting what you need from a doctor, why stay committed in a relationship that does not work for you? Join support groups where you can network with other people who are struggling with the same disability. They are a resource.

Lastly, if you’ve changed doctors for yourself or your child several times because they’ve given up on you do a self evaluation. You are a common denominator. How are you handling your relationships? Are you following the medical advice offered? Are you using the support team recommended? If you don’t follow doctor’s orders then you are culpable as well.

I'm going to continue this blog & my questions with Makasha in Part 2. Click the link below to proceed to Part 2.

http://mayneman.blogspot.com/2014/09/the-autistic-life-part-2-of-2.html

When God Isn't "Good" Enough

Yesterday, I was reading a blogpost and it touched my heart and spirit to the core. She's one of my Twitter friends and I asked her if I could post this on my blog and she said sure. With that said, I owe a huge thank you to MiMi Atkins. This is her blogpost entitled When God Isn't Good Enough. Hope this blesses you as it blessed me.

Living a Christian life is amazing and it can also be a very lonely road, especially if you are sold out to Christ and truly content on taking up your cross and following Jesus. The more you study his character and who he was, the more you try to become like him. And that's when I think the issue arrives. In trying to become more like Jesus, I think I failed as I was trying to do the work instead of allowing his love to permeate my being and take full control.  I wanted to be holy and set apart but I lost focus on him and it became about me. Thus, I took my eyes off the focal point - God and began to place them on self and humans. And Luke 14:26 clearly states, "If you can not hate your own life then you can not be my disciple."

Before long, I started to depend on people for things I normally depended on God for. When I wanted to talk and pour my heart out to someone, God wasn't enough. That's sad, I know. I needed to hear a voice and I needed to "hear" and know someone cared at that moment. But guess what, not one single friend would answer the phone when I called or I would text them to call me but they were too busy with their lives to respond. This caused me to get upset with friends and I even lashed out at one because isn't a friend supposed to understand and connect with you to know when you are hurting or you need them? Isn't the connection supposedly so spiritually deep that a friend "feels" you? Or so I thought. I was wrong and once again, God proved to be that faithful friend, always there when I need Him as He took me in His arms and just held me close in my moment of weakness and brokenness. Psalm 34:18 tells us, "God is close to the brokenhearted and saves those who are crushed in spirit."

You see, God is a constant friend, unlike humans who will be close to you for a season and then drift away for whatever reason. God doesn't do that to us. He is ALWAYS there. Never leaving nor forsaking us. The world can turn its back on you and forget about you but how amazing is it to know God never does that. And when you cease to love God or He is not enough, He doesn't judge you for it or abandon you. It is then that God extends His arms for you the most to return to a love who is waiting there. 

That night, when no friend was there for me, was the night I was reminded (yet again)  that no matter what, God is there and close to the brokenhearted. Like a little girl, desperate for her Daddy, I ran outside and looked into the sky and just held my hands up proclaiming, "God, I'm sorry. I am sooooo sorry that for a moment I forsaked you. I placed humans on a pedestal they should've never been on. I even got upset at a friend. I pray that person forgives me, but most importantly, I need you to forgive me, God. This is not minor because I put others before you and that is idolatry. And I don't desire to have anyone before you, God. I truly don't."

"MiMi," He whispered, "There is not a single person on this Earth who can take my place. Not a friend nor a parent, not even that precious daughter I blessed you with. That's why Matthew 10:37 says, "If you love your father or mother more than you love me, you are not worthy of being mine; or if you love your son or daughter more than you love me, you are not worthy of being mine."  No one comes before me, MiMi. Not one single person. I created you so I know everything about you. I am the only one who truly satisfies and completes you (Psalm 103:5). You have to be complete in me and not rely on humans for what only I can provide. And you see the way I talk to you, that is how you should talk to people when you feel they are wrong - with love. Your God, the one you call Abba Father is love. God is love."

I felt so convicted because I can be pretty harsh with my words and I had been. I felt so guilty, so spiritually broken and erupt. So often we think seasoned Christians have it all together, but we aren't perfect either. We ALL fall short of the glory of God every single day. No matter how "strong" people present themselves via life, social media, or any other platform, these people struggle just like you do because they too, are human. And I feel it is only fair for me to get spiritually naked (transparent) before you to allow you to see that.

And that's when it hit me how easy it was to make someone or something an idol in your life. Prayerfully, no one intentionally does this but it happens. We say often that God is enough but at any moment if our flesh takes control that can diminish and we rely on the unreliable. This is not to say that humans are not good enough but it is to say that they are not GOD enough. Only God can love us as we should be loved - unconditionally. And that is because He created us and only He sustains us in our darkest hours and deepest despairs.

That night, I learned an invaluable lesson. Well several:

•  I still need to surrender my emotions to God. 
• The past hurts from being abused as a child needs to be  TOTALLY surrendered because that is why I rely on humans for verbal acknowledgement.
• People are not perfect so don't EVER expect them to be.
• Friendships aren't replacements for Godship.
• Grace people with the same love God graces me.

I used to think I had it all together and that I had "few" struggles but the thing about dying daily results in daily revelations about self, too. We are always works in progress and that keeps us in need of a Savior - every single day of our lives.  Christians are not perfect and every time I think of all the time I spent in the world, it breaks my heart to look at the residual damage it did to my soul. I gave the devil nearly most of my life and it tarnished a lot in me but I have since returned to my Creator and God fixes "gently damaged goods" everyday. Please pray for me as God softens my heart because I realized that I am hardened in some areas and God can't get through a hardened heart. 

Please realize that we will never be perfect, so stop trying to be. Allow God to do the work in your life. You take a backseat because you aren't equipped to change yourself. Only God can do that. If you are left with conviction after reading this blog, please accept that as you being a mature Christian or person and do not get upset. Yet, get on your knees and cry out to God to be with you and help you die to self. You are  broken and hurt and in dire need of a healer and God is the ultimate healer. Do not put a bandage on a wound that needs a surgical procedure. Allow God to piece you back together. Apologize to anyone you may have hurt and forgive yourself, too. In our quest to be more like Jesus and God, we should remember the key value and token is LOVE and GIVING IT. Always.

"For God so loved, he gave....."

John 3:16