Dating and Autism

 I read somewhere recently that the divorce rate among parents with autistic children is about 80%.

Scary stuff huh? Well, what about single parents with autistic children? Someone should do a study on our chances of ever getting married. But I guess you have to date first before you even consider marriage, and dating seems impossible when this is your life. Every time I meet a guy with whom I share a common interest, I always wonder when I'm supposed to tell him. "Hi, my name is Lade, and I have 2 boys. 1 is autistic. He'll probably write on your walls and eat your soap, but he's the most awesome 6 year old in the world!" Then, I imagine them taking off like road runner. In the beginning, men are always interested, but as soon as I reveal I have an autistic son, they run away from me like a plague. Someone suggested an online dating site for parents with autistic children, but I'm 25 for crying out loud. Online dating is the last resort for people over 40, right? ...right? I don't blame anyone for hightailing it. Not everyone can handle the emotional and physical stress of raising a special needs child. Someone said "God only gives special needs children to special parents." But does God provide special step-parents too?

Dating is tough enough as a young mother of 2, but when you add the element of autism to it, it seems impossible. Don't get me wrong, I made my bed, and I can definitely stretch out and lie in it. However, I must have watched too many Disney movies as a kid because I am a hopeful romantic. But what do you do when no one wants to babysit, and when you're too scared to even let most people babysit? It only takes a split second for something to happen (if even that long with mine). I always say dating me comes with a lot of fine print. I can only do lunch dates when the kids are in school....I come to you, you don't come to my house....I may cancel or stand you up often, as things always come up...I only seriously date men w at least one child. Parents are more empathic of my world that "single folk."  Great catch huh? :) Don't get me wrong, I don't want a "savior" or someone who falls in love with my kids and dedicates his life to me for that reason. I believe God's structure of the family is husband and wife first, then kids, then everyone else. For that reason, the person I will marry will be the person I would have married even if I didn't have kids. The character of that person is part of that package.

I thought I had found all that in my last relationship. And to top it all off, he had a brother who required special care, so we related on that level. So when that ended, I figured I was doomed to be single until my late 30s when I would find a nice divorced man to marry. Either that or I had to figure out how to get along with cats...quickly.

God had a funny way of working things out. As soon as you think its over, he does something to make you realize who the boss is. He refocuses your attention on him, so you can give him all the glory. As soon as I gave up, he turned my attention to someone I had long decided was "just a friend." He calls me his "blessing in an unlikely vessel." However, along with all the qualms about a new relationship, I have the added worry of what role autism will play in this relationship. When you do find someone who is willing to accept the challenge of raising your autistic child with you, a whole slew of questions and challenges arise that you never even thought of before. Will it be the glue that sticks us together, or will it be a hindrance? Will he google "how to remove cheese from walls" with me, or will he ask us to leave, groceries and all? Will he have so much love for my family that he will join us on our autism walk, or will he tuck his tail and run after fully realizing how tough my world is? Of course I pray for the former, but we'll just have to wait and see....

I walk in faith

We just finished the 2011 Walk Now for Autism by Autism Speaks. If you've read my previous posts you know how important this walk is to me. It represents new beginnings for me and gives me reassurance that I am not alone. I am proud to say that this year, I did not cry one bit! Probably because it was so hot that all my tears dried up before they could hit the surface! 

Every year, I pray for something different. Our first year, I asked for strength, and it has come in waves. I've had moments when I felt like I was alone in this and everyone expected way too much from me. See, the thing about being a "great mom" is no one expects anything short of perfection from you. So while the less-than-perfect moms are getting help left and right, I'm left alone, stressed out and tired. No one expects you to complain, make mistakes or even cry. Of course in the beginning people throw their support at you. "Let me know if you ever need anything" "I'll always be there for you" "If you ever need a break, call me." However, on the days that I've been 2 steps away from pulling all my hair out or felt like I should just stay locked in my bathroom forever, I've been mostly...alone. That's just because people have their own lives to live. People have the best intentions, but I've realized that in the end, it really is just my boys and I, and I'm okay with that, because my strength comes from a source like no other.

The next year, I prayed for understanding. There was so much in this new world I didn't understand, and I hate not knowing. By then of course, I understood the basics, but I was starting to dig deeper into sorting out what exactly Autism was. It's taken me this long to realize that every day, autism is something different in my son's life. It is the thing that makes him cringe in pain when the school bell rings, but also the thing that makes him wake up at 5am laughing hysterically for what seems like hours. Autism is the thing that has kept my son from independently speaking, but also the thing that puts him at the top of the list of people I know with incredible problem solving skills. Autism one day is cheese on my walls and the next day, tight hugs that last for minutes. One day it's his inability to draw horizontal lines, and the next day it's him clicking away on a computer program. Autism is not all negative. I may never understand the science of it, but I know this. It's what makes him ....him.

Our third walk year, I prayed that my son would speak. He was 5 then and still nothing. I was nervous and worried that I would never even know what his speaking voice sounded like. I was scared that I would never hear those words a mother longs to hear. How would he survive as an adult without being able to talk. I had seen autistic kids with communication devices, and if it came to it we would walk that line, but I didn't want that to be my son. I wanted him to speak like other kids. I wanted the light to go off in that part of his brain that would make him look at me and say "I love you mommy." I dreamed about it too. In my dreams, he had a voice of an angel. In one dream, he sang like an opera singer, even at his young age. At this point he was humming songs, but no words. I thought about using that as a bridge to reach the speech part of his brain, and it worked. I'll talk more about it in a later post, but now I can get him to repeat words after me. He will VERY RARELY say "hi" and "bye" independently, but that is probably more out of routine than wanting to communicate. However, I take my blessings as they come!!!!!

This year, I prayed for peace. Not for me, but for CJ. He has been having a lot of sensory issues in the last few months and it's very painful and disturbing sometimes. I want to pick his brain and find out just what he's going through when he gets that faraway look in his eyes and the veins pop out of his neck as he screams, jumps and applies pressure to his chin anyway he can. I want to ask him why he wakes up in the middle of the night sometimes laughing or crying. I want to ask him why he enjoys peeling the skin off this fingertips, or why he keeps using clips to grab his belly button. I want to ask him what goes on in his head when the vacuum cleaner goes off, or when we walk into a restaurant full of people and noise. However, since he cannot respond, I'm just asking God to take care of it. This year, I prayed for peace.

The Wheels on the Bus Go Round and Round

Whoever picked the color yellow for the color of school buses was a genius. I love being able to spot them from afar. I would have picked neon pink but that may cause accidents!
 
Most parents get nervous at the idea of putting their child on the bus for the first time in Kindergarten. When you have a special needs child, that time usually comes a lot sooner than your heart is ready for. CJ had just turned 3 when our time came. I was terrified! Here's my little baby - barely 3 feet tall and not even 30lbs - in a giant yellow bus. It's funny how the "short" buses seem so little until you have to strap a toddler in it. Then its too big, the seats to wide, and the aisles too long! Couldn't they have personal chauffeured cars for special needs kids? Wait...that would be me right?

Having 2 kids in two different schools, both with the same start time, was proving to be a problem. One or the other was always late. So, I made the tough decision to let them ride their buses. Since CJ has sensory integration issues, I was very concerned about him dealing with the noises and vibrations of the bus. However, he was more than excited to get on the bus ...at first. I, on the other hand was snotty nosed and tear stricken. Call me crazy, but I followed the bus to and from the school everyday for 2 weeks just to make sure the driver wasn't speeding or worse, running off with my baby! I even traded cars with my mom and brother occasionally so it wouldn't look so obvious!

Our first bus driver was, to put it nicely, very unprofessional. She would do things like start moving before the bus aide had CJ fully strapped in, and was extremely rude over the phone. I realized that the quiet, shy personality I had would have to be tossed out the window to get things done. After a couple of calls to the transportation department, we had a new bus driver. He was a lot nicer and understood my fears and concerns. He would stay and chat for a couple of minutes if he had some spare time on his route, and that made me begin the process of trusting him more.

It's been 3 years since CJ started school now, and he had his ups and downs with riding the bus. Sometimes he would run to the bus excitedly, and other times, it scared him. It all depended on how sensitive he was that day to noises and touch. We're no longer on the bus, but thankfully, I have a flexible work schedule that allows me to play chauffeur to my kids (and a couple of others).

Acceptance

CJ was 3 with the IQ of an 18 month old. He was severely autistic and developmentally delayed in all areas: Cognitive, Social, Fine Motor, Gross Motor, Speech and Learning. He could grow up and live a fairly normal life or he may be totally dependent for the rest of his life. He may never talk. He may never learn to button his shirt.The child psychologist sitting across the table was telling me these things as my mom sat next to me rebuking the things the psychologist said in the name of Jesus. I didn't realize my face was covered in tears until one of the therapists in the room handed me a tissue. I sat there with CJ in my lap, trying to digest the words they were throwing at me, but not really understanding most of it. Occupational therapy...hyper and hypo sensitivity...speech therapy...no cause...Marcus Autism Center...IEP...sensory belt...support group...no cure. Every time they explained a reason why he fell on the Autism spectrum, my mom would say something like "That's a lie. I rebuke it in the name of Jesus." She was right! I didn't know what these ladies were talking about. That was not my baby they were talking about. 

That nagging feeling again... Deep down inside, past all the pain and denial, it was there. Acceptance. I just had to dig deep to get to it. I looked down at my son twisting a pipe cleaner and kissed him on the forehead. The meeting was over. They handed me brochure upon brochure, booklet upon booklet, books, websites and so much "take-home" information that we needed a bag to carry it all. Finding acceptance wasn't going to be that easy.

I spent most of the first few weeks crying, and people didn't understand why. "He's still the same CJ" they would say. "This doesn't change him." But I had to mourn in my own way. I had to mourn the future I had dreamed of for him because I knew that from this point on, our lives would no longer be the same. I had to mourn the word "regular" so I could accept and embrace this new word and world of "Autism."

April was Autism Awareness Month and CNN ran a week long special on Autism. All week I watched story after story about success stories of autistic kids. I heard parents tell their story of how hard the beginning was for them. I watched a special about an autistic boy who found his passion in basketball and used that passion to break barriers. Google became my best friend. After the kids had gone to bed, I would spend hours researching our new world, and watching youtube videos of autistic kids. The Autism Speaks website became my best friend. I registered for the annual walk for autism and sighed. If we were going to do this, we were going to do it the right way. I was not going to be one of those parents who sat back and let life happen to their kids. My kids were going to embrace their lives. 

Acceptance came Saturday, April 12, 2008, the day of the Georgia Walk for Autism at Atlantic station. As soon as we walked out of the parking garage and into the resource fair, tears started pouring from my eyes. I could see a little bit of CJ in a lot of these kids. Kids flapping, screaming, laughing hysterically, rocking, staring. You couldn't help but feel the love and acceptance in the air. Everyone here knew what I was going through on the inside. They didn't look at my son funny when he started jumping. Instead, they blew bubbles for him to hear his addictive laugh. There were families there supporting each other, sporting identical shirts of support. There were resource tents from companies that were dedicated to help families through their journey. My best friend was with me. We walked around taking it all in. I felt something changing in me when I heard a speech from an older kid who was autistic. This was a different world alright, but it wasn't that bad.

Someone walked by me and I read her t-shirt. It said "Autism Rocks! (And flips and flaps and squeaks and squeals and licks)." I smiled... I mean really smiled for the first time in months. We were home.

It's a new day

I've been listening to people tell me for years to put my experiences with my son to paper. I've also read a lot of blogs by moms raising kids with autism that are...to put it frankly, sugar-coated. There's no sugar coating here! I'll tell you what it's really like - from the days we all spend forever laughing for no reason, to the days I want to lock myself in the bathroom and cry.

Let me back up and give you a little background. I am a 25 year old single mom of 2 boys. My oldest, J, is 8 and the life of the party. Very typical kid...sports, video games, talking back, calling girls gross while giggling...all the "wonderfulness" that comes with raising boys. My 6 year old, CJ, is my special little angel and he's severely autistic. I'm not telling you what Autism is. Google it, it's 2011.

CJ was a different kid from the very start, but what child isn't? He was born in 2004 and minutes after he was born, he tried to climb out of the bassinet. I should have known then he would be special :) There were signs early on that he was dealing with something internally but hindsight is always 20/20.
In 2006, it became apparent that something was going on. He was talking a little, but his speech wasn't developing at the rate it should have been. He played in non-traditional ways. Imagine having a kid who's favorite pastime was pulling out the slats on window blinds and twisting them for hours. He also enjoyed tearing paper (we call him the human shredder), and pressing the on/off button on toys for hours on end.
Autism was everywhere on TV during this time. I was getting calls from friends and family telling me to watch specials that showed a kid that was "flapping/jumping like CJ does."

I was in denial. I'm Nigerian and back home, if something's wrong with your child, it's either your fault or the devil. Which means you either hide them away or take them to all kinds of pastors for deliverance. Besides, my son wasn't autistic! He didn't stare off into space like the kids on TV did. My son gave me kisses and loved physical contact. He didn't find patterns in newspapers, and he sure as heck couldn't play the piano at 2-1/2 (trust me, I tested him). My son was not autistic. Maybe he had a speech impediment. That's it! A speech impediment. I was going to take him to Babies Can't Wait (a program in our area for toddlers with developmental delays) and prove everyone wrong. That nagging feeling wouldn't go away though. Even when his pediatrician at the time reassured me that it was just him developing at his own rate, I couldn't shake that feeling that something was wrong.

4 months and numerous tests later, we had a diagnosis. Autism. It sat so heavily at the bottom of my chest. I cried constantly for a week. People would say things like "He's still the same child you've always loved" or "That means he's probably really smart" and it would just annoy me. This was my baby for crying out loud! Would he ever learn to dress himself? Would he ever tell me he loved me? Would he ever go to college? Find love? His speech was completely gone at this point and replaced with giggles. Truthfully, aside from God, his giggles were probably the only thing that kept me going at that point.

So there we had it. I was 21 with a 3 year old with Autism. What now?