Life has a way of making us grow up...whether or not we're ready. From the time I was about 18, I'd always wanted a child. I would get so excited each month, only to be let down. Mind you, I got married to my first husband at the age of 19 (1989). For all the years of our marriage, I was pretty much told by all the doctors that it was my fault I wasn't getting pregnant because I was overweight...obese. No tests were ever run, nothing. Just pure judgmental speculation that it was my fault due to being....fat. Fast forward to 2004......I was surprised to find out, in July, that my then husband and I were expecting. Though we were excited, it didn't last very long. I started getting sick (which I hadn't been doing). I should have known something was wrong...but ignored it. We found out the day of my 34th birthday that the baby was dead and I would miscarry (which happened the next night). Due to me "flipping out" (as my ex put it), we ended up separated in 2005, divorced in 2006.
In April, 2006, I met James. I wasn't looking for a long term relationship, much less a marriage partner, or even a baby daddy. However, all three happened (not in that order). I got pregnant (much to my surprise) seven months into our relationship. Our son, Jesse, was born in August, 2007. I should have known something was up because he didn't sleep like other babies did. Even at a week old, he'd lie on the couch after being changed and just wiggle, wiggle, wiggle....looking everywhere. Naps, what were those? When he took one, it lasted maybe 30 minutes tops. Even at night it was like this.....two hours sleep, wake up, eat, wanna play for another 2-3...then repeat. Our son didn't sleep all the way through the night until he was almost 3. Needless to say, I was an exhausted momma. I didn't understand why he was so active, why he didn't want to sleep. Even when I mentioned things to his THEN pediatrician, I was treated as I were some 13 yr old first time momma. Mind you, I turned 37 eighteen days after his birth. I didn't understand why he'd scream bloody murder when we'd go to the store. I didn't understand why he behaved any of the ways he behaved.
By the time he was about 4, we changed his pediatrician. Allergy test done. Boom...milk allergy. Thankfully, I'd gone against the previous Pediatrician and taken him completely off milk. Next thing, an "evaluation" for Asperger Syndrome and ADHD (the latter never being in question). It took us until December 2012, to finally get the diagnosis of an Autism Spectrum Disorder and Sensory Processing Disorder.
I went through sharing all of this because it's important to the rest of this blog.
For many years, I've "mourned" the child I didn't have. I cried because I didn't have a "normal" son. I viewed my son as broken in some way. It hurts me even typing this. However, it's important because I know there are others who've felt this way, but were too afraid of saying it. You see, I waited a long time for a child. I couldn't wait to take my son to Chuck-E- Cheese. I couldn't wait to watch the fireworks on July 4th and listen to him "ooooo" and "ahhhh". That stopped by the age of 4. The "boom" of fireworks scares him. The mouse at Chuck-E-Cheese terrifies him. Rubber fishing bait grosses him out...and he will run from it. The sound of certain motorcycles will make him run off in terror, screaming, so he can "hide". Once again, he's afraid of the dark....so much so that the doors have to be closed completely, curtains must be closed completely, every light in the house must be on (just for him to go to the bathroom). In the bathroom, the shower curtain must be closed so he can't "see" the dark. His snacks must always be in the same wrapper, or he will not eat it. This year, the sound of the brakes on his bus bothers him. Listening? Quite often, I must yell in order to be louder than the other things begging for his attention or other things that overwhelm him. When his senses get so overloaded, being pushed over the edge leads to a meltdown. This is different from a tantrum. He doesn't care who sees it. He doesn't care how he's perceived to be behaving. All he sees is what's directly in front of him...and it's usually me or his daddy. We hold him, when necessary, so he can fight the meltdown out without injuring himself, but mostly so no one else is injured. See, our lil man likes to fight during a meltdown. He doesn't, at that time, realize what he's doing. Once a meltdown is over, though, PEACE must be maintained because his little brain is still worked up. What we got through, what Jesse deals with, is mild in comparison to what some others go through.
I don't look at autism as a gift from God. Our son is a gift from God. If I could take the autism away, I would. Sometimes, one of the most difficult things to do is look him in the face and seeing a "normal" child. No matter how "normal" he behaves, he has a lost look in his eyes. It's this look like he's trapped within himself..and can't get out. Mind you, he may not feel that way. I don't know. He doesn't know how to express his often mixed emotions...at such a young age. The thing is, I admitted this to my sister one morning on the phone. I broke my heart to hear the words flow from my mouth, even as it hurts just reading the words as I type. I finally admitted to someone that I had a "broken" child. I felt so selfish for even thinking it, much less saying it. How could I, his mother, feel that way about him? I didn't get to be the mommy I'd always hoped I'd get to be. I was forced to become an alternative version of her. Even now, the realization of that hurts so deeply. BUT.....my son didn't ask to be born with Autism. Yes, if I could take it away I would. However, my job isn't to try and "fix" him. My job is to love him. My job is to raise him.
I no longer grieve the child I didn't have. Now, I sometimes cry for the years I lost in not bonding better with him (though we've been bonding over the past 3 yrs or so). See, I didn't "bond" with my son when he was younger. I kept hearing things like "what are you doing to that child" or "why is he acting like that". Even when he'd have a night terror, I'd be asked what I had done wrong. Even now, people tell me that they don't have problems with our son's behavior. Though I know they don't mean it like this (at least I hope they don't), it makes me feel as if I'm a bad mommy...that I'm the one causing his behavior. I cry so much, sometimes, because my heart aches....not just for how I feel, but how my son must feel. Every day, seeing things much brighter than I. Every day, hearing things much louder than I. Every day, his sense of touch much more sensitive than mine. I've realized....my son wasn't the one who was broken.....I am. I was broken.
Our son is a blessing. I've learned so much from him. I'm learning how to be a better momma. No, I do NOT pray for patience (it's tried enough already...lol). Yes, I still have to explain to people that we don't do certain things, don't go to certain places, don't sing happy birthday, don't have balloons of any kind, etc. Now, I take joy in every laugh (whether appropriate or not). I take joy in every smile. I take joy in every sparkle he gets in his eyes. Just a giggle in his sleep makes me smile. I have the most loving son on the planet (yes, he loves to snuggle).
This blog wasn't written for sympathy. It was written because I want other parents to know that they have a safe haven to express the type of feelings that I've had....without being ridiculed. My life has been enriched so much by my husband and our son (as well as my step son). I am forever grateful for the "legos" I've stepped on to get to this point. Yes, it's been a mentally and emotionally painful 6 yr journey to get to this point; however, I finally reached it. Be the shoulder for someone to cry on. Be the arms that just give them a hug while they cry. Be a rock when they can't even find the strength to stand. Parents of special needs children may seem tough, and we are...we don't have a choice; however, even we need someone to just "be there". That's my advice in this one...."just be there". Trust me, that is the best thing anyone can do.
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