Comments…

The last few weeks have been pretty decent; I’d be lying if I said my home was filled with rainbows and sunshine. Ellis has made tremendous strides in pretend play and potty training, and I’m finally on my new RA meds which have improved my pain level tremendously. On the downside I’ve had another case of the stomach flu and am battling another dental infection that is causing me to feel tired and have lots of chest pain.  I keep hoping that I’ll be able to get the recommended dental surgery done that I need so that I can continue to smile, sing and avoid these infections plaguing my body causing more heart issues. Right now paying for services for Ellis is my priority and as usual my health issues are on the back burner.

We are all guilty of making judgments and assumptions about others based on a quick interaction. I find that the internet has given people plenty of outlets to spew ignorance and judgment. The worst place is the comments section. Every article I read seems to have someone ranting about something they know absolutely nothing about in the comments section. When the CDC recently released the new statistics for children diagnosed with autism the comments on articles posted by various media outlets were insulting, heartbreaking and scary. Here are some of the ones I came across:

“Maybe one reason is that it’s an easy way to get parents to pay for medicine? Or perhaps many of those who are diagnosed are simply in need of better, or even some, discipline.”

“I’m interested in how easy it is to gain financially off of a bogus diagnosis of Autism or Autism Spectrum Disorders…similar to Traumatic Brain Injuries, which have very vague checklists for a diagnosis, but almost a guarantee for getting the kid on SSI/Disability for life. And a $800 a month payment deposited (usually) into the single mother’s bank account. I’d like to know how many of these families have maxed out their time on welfare and are using this as a scam to get SSI. With so many people hitting their five-year limits on welfare, they’re getting desperate. They outright refuse to work, and their only meal ticket is exploiting their kids to act out some phoney psychiatric condition. I agree Autism exists, but I find it questionable in most cases where there is a parental history of never working and always accepting welfare, food stamps and Section 8 housing.”

“Increased Diagnosis accounts for half of this, and the other half comes from awful parents who love having an excuse for their child’s rotten behavior.”

“Sometimes I wonder if the kid is just weird. There are kids who are naturally withdrawn. I think parents run to the doctor’s office and would rather it be something to medicate than actually help the child.”

“Seems like a rush to put labels on children. Autism Spectrum Disorder??? In my day a kid who was quiet, liked to count things, made good grades but socially awkward was a future accountant, doctor or just a smart geek.”

“Autism is the new ADD/ADHD. No way it is this prevalent. What IS prevalent are kids that are jerks and parents not doing their jobs.”

There are many people who would simply say that these comments only represent a small group of people or that they aren’t worth acknowledging. I would disagree. These are the people that my son will interact with as he gets older.  According to www.autisminblack.com, an online reference for autism in the Black community “The perception in America is that Black youth are generally unruly, criminal, and frequent discipline problems. This is especially true for young Black boys.”  We saw this first hand as our attempts to get answers regarding Ellis’s behavior had us berated with questions about if my husband was in the home, and assumptions that one of us was unemployed or on public assistance.  As a black woman I know that some people will always see me as a stereotype. I feel that I have to know the negatives that are out there as well as the positives in order to be a great advocate for my child.

Recently God has opened my eyes to how many similarities there are between my journey with rheumatoid arthritis and my son’s with autism. When people first meet us they don’t automatically know that there is something different.  If they take the time to interact with us they may see that I sometimes move a little slower than others or that his language is quirky and broken. Even if small things like these are noticed they still don’t see the full picture.  In my dream world everyone is patient and empathetic, but alas it’s just a dream. Just like I have to deal with comments about not looking disabled enough to have a handicap placard my son will have to deal with snide comments as he gets older about his quirks. I’m glad that God has given me a window to understand my child better through my own journey and pain.

I wasn’t ready for change.

After Ellis’s diagnosis I immersed myself in books and websites about Autism. I lost sleep over my fears for his future, and cried because everything seemed so overwhelming. After a while I found local organizations and autism parents, and a support network started to come together. Somewhere along the way I somehow convinced myself that this wasn’t going to be that hard. When Ellis would have a meltdown in public, people would give me looks of empathy or tell me how their children would do the same thing at his age. I felt like I had everything together and everything was going to be ok.

Overnight I was pretty much hit with the reality that things were not going to be easy. Ellis really shot up during his last growth spurt. He may only be 3, but he definitely has some height on him like his 6’7” daddy. People’s perceptions of my precious boy have changed and it breaks my heart.

I’m depressed.

Where was the chapter on how to deal with the emotional turmoil you will face when people openly judge your parenting? Did I miss the section on how to handle your emotions as a parent when you see other children make fun of your child because he is different? How do you deal with the feeling of being robbed of special moments such as birthdays or holidays because your child doesn’t comprehend or even notice these days are any different? How do you cope with the anxiety that creeps in with fears of elopement or what your child’s life will be like when you are no longer here to take care of them? I want to be able to protect him from everything and make sure that he isn’t taken advantage of. I want to be able to trust others and feel that they have his best interests at heart.

Don’t get me wrong, I see all of the wonderful blessings in our situation and I’m thankful that God felt that we were the perfect parents to embrace and nurture our child’s differences. He’s come so far from where he was a year ago. Even with all of his success, the reality is that there will be days ahead that are really hard and that is scary. 

Welcome to Our World

It’s been 8 months since our son was diagnosed with Autism. 

After our son’s second birthday in September of 2012 we started to notice aggressive behavior and regression in his language. If I’m honest with myself, there were probably signs of autism as early as his first birthday. I used to say that he looked as if he knew exactly what he wanted to say but the words just wouldn’t come out. I could see understanding and frustration in his eyes. We took him to multiple pediatrician appointments where they told us that he was just a strong willed child. His preschool teachers had issues with him not following directions, hitting, pushing and throwing things at them and his peers. Upon his pediatrician’s recommendation the teachers began taking him to the office to cool down when his behavior was out of hand. I had searched the internet for information on the behaviors that he was exhibiting and felt they were consistent with Autism. When I brought this up in one of our many trips to the pediatrician they seemed more concerned with our home life, rather than his behavior. I didn’t want to seem like a hypochondriac so I dropped the topic.

Last May Peanut had a meltdown during the mother’s day tea at his preschool.  The other mothers stared at me with judgmental looks as I tried to calm him down. He was fighting me with every bit of strength in his little body, kicking and screaming at the top of his lungs. My RA often makes it hard for me to control him during moments like this. I gathered up his belongings and fled to the parking lot where I broke down in tears. I looked up the contact information for the local Children’s Developmental Services Agency on my phone and left a tearful message pleading for someone to call me back as soon as possible.

When our wonderful CDSA caseworker Teresa (OUR ANGEL!) knocked on our door a few weeks later l was at my wits end. I felt like the most awful mother in the world. No matter what I did it seemed like my son hated me. He would throw things at me, hit me, kick me and scratch me. Every time a meltdown started I just wanted to lock myself in the bathroom and cry. Our first meeting was short and assessment appointment was scheduled. On the day of his assessment I was a nervous wreck. I knew in my heart that my son was autistic but was preparing myself for another expert to tell me that he was just a strong-willed child. When the psychologist said “These results are consistent with Autism Spectrum Disorder” a wave of relief came over me. We were thrown into developmental, occupational and speech therapy services with each meeting twice a week until his third birthday.

I have learned a lot about Autism over the last 8 months. Our son is currently in an autism Pre-K program through the public school system where he is thriving! There isn’t a day that goes by that he doesn’t do or say something that surprises me.

I’m the first to admit that I used to be the person giving the stank eye to parents whose children seemed to be out of control. I made assumptions about their parenting skills without ever thinking about the bigger picture. It’s an embarrassing thing to admit, and those moments of judgment cross my mind every time I see someone giving me that very same look. I hope that you all will enjoy following us on this crazy journey and that you will become autism aware along the way.

“When you know better, you do better” – Maya Angelou

PS- I apologize to all the grammar Nazis out there for the grammatical errors in this post, as well as all future posts. J