Exploring the Past: Part 2

January 5, 2013


    99% of the time I go on and on about how much progress Ali has made. 99% of the time, I don't complain(on the internet, at least). But you know what? Sometimes? Autism SUCKS. I usually talk about how "we're on the road less traveled, but at least we're together" and "God doesn't make mistakes." But, DAMN IT I DESERVE MY PITY PARTY!!!

     I remember five years ago, looking into Ali's gorgeous little eyes and telling him that he could be anything he wanted. I had so many dreams for him. I could picture him graduating high school, going to college, getting married, etc. etc. All of that is gone now. ALL of it. I wanted so much more for him!  Every year on every birthday in the past, we've thought "He will be talking by his next birthday." Not yet. We are still waiting. And I think about how if he could just communicate with us in ANY way, all of our problems would be solved! It would make it so much easier, but I know that is not the whole truth. We have lots more to deal with.

     He has Sensory Integration Disorder. His sensory issues are very hard to handle sometimes. He has some outrageous oral sensitivity issues. Just the feeling of something different in his mouth seems to be painful for him. He is also very sensitive to sound. There are certain sounds that he cannot tolerate, such as the sound one of his Ninja Turtle toys makes. He freaks out. He also will NOT let me cut his toenails. I have to do it in his sleep! He hates for anyone to touch his feet, and has to wear socks at all times.

     And he has a Sleep Disorder. Oh glorious clonidine, how I love thee. He will not sleep without medication. Ever. He didn't sleep through the night until two months before his 4th birthday. His body is tired, but his mind won't let his body stop moving.

     Which takes us to the ADHD. Lord have mercy, this child bounces off of the walls. I mean that quite literally. He takes a running start at the wall(or the window, or the door...) and bounces off. Unmedicated, he knocks over furniture and people. He doesn't mean to, but he isn't aware of his surroundings. He's hurt his siblings and himself several times just by not knowing what was going on.

     None of these things are his fault. Although I am upset/angry/sad at the moment, I know God truly doesn't make mistakes. Ali has a greater purpose than any of us can fathom. I just don't know if I'm up to it. I try to be a good mom to him, his brother, and sister. I try to be active with them, listen to everything they want to tell me, and make them feel like the beautiful little people they are. But what if I'm not good enough? For the first two years of Ali's life, I was a piece of crap mom. I wasn't what I should've been for him. I always wonder, if I would've paid more attention to the signs, would I have been able to get early intervention services early enough to where he would've talked? Perhaps his autism wouldn't have gotten so bad if I would have understood what was happening? "He was my first child, so I didn't know what to look for." Is that just my excuse for ignoring what was so plain to see?

     I remember getting Ali's hearing checked multiple times before he turned 2. He stopped responding to his name, stopped developing speech, and started losing the words he had already learned at around 18 months. He was slipping away, and I didn't realize my world started to crumble. When I starting dating The Hubs (he is Ali's stepfather), he kind of asked questions and pointed out things that I hadn't noticed.

     We hoped upon hope that getting tubes put in his ears would help. We thought he just couldn't hear! And our family doctor at the time acted like I was crazy for being concerned. "He's a normal boy. There's nothing wrong. He'll grow out of it." And I listened to that for a while. But he was almost 3 and still not talking, so I demanded an evaluation from a speech therapist. I was right about his developmental delays, and he started speech and occupational therapy twice a week. Needless to say, we switched doctors. Our new doctor LISTENED, and she immediately agreed that we should have him evaluated. 8 months later(the waiting list was looooooong), we found out for sure that he had Autism Spectrum Disorder. It wasn't surprising, but I'd be lying if I said it wasn't devastating. Every hope and dream I had for him went out the window.

     I know that we are now on a different, not lesser, path. My dreams for him were MY dreams. But isn't what God has planned always better than what we plan for ourselves? I know I wouldn't be half the mom, heck, half the PERSON, I am today if it weren't for the struggles that we've been through with all of this. But it is HARD. Some days, I don't feel like being a mom. I wouldn't trade it for anything, but it sucks. Autism SUCKS sometimes. The feeling of "I have to live forever" because you don't know what would happen to your kid if you died SUCKS. Feeling like if you would've done something different, maybe your child wouldn't have to struggle through the most menial of tasks SUCKS. Having your almost one year old son passing your five year old in any area of development SUCKS. Wondering if there's some miracle treatment out there that you haven't tried to "fix" your child SUCKS. Feeling guilty for wanting to "fix" your child REALLY SUCKS.

     Every great once in a while(about once a year, usually around his birthday) I mourn the loss of a person that never was. Every time The Princess passed Ali in any area, it was bittersweet. And now, Junior will do something every once in a while that shows just how far behind Ali really is. It just breaks my heart knowing that he will have to watch his siblings growing up without him. Does he notice? Does he see how it hurts me to see him falling more and more behind, but he just can't tell me? Do I make him feel like a lesser person because of all of that?

     I don't think I could handle any more kids, and not for the reasons you might think. When The Princess hit age 2 and still wasn't talking a whole lot, I was out of my mind with worry. I kept thinking that I couldn't handle two with autism. Now, I watch Junior like a hawk. I try to make sure I don't miss any little sign of anything "off". But the biggest reason why I don't want any more kids is because I don't think my heart could take a third child surpassing Ali developmentally.

     Thanks for listening. I know I probably sound like a big crybaby, and maybe I am. But it hurts. Sometimes it hurts so damn bad that I question God's judgement in making me Ali's mom. I will die trying to be the best mom I can for him. I just hope that it's enough...