Pumkin Patches, Parenting, and Special Needs, it's all a rollercoaster.

Yesterday, my youngest, the Ragin' Cajun, went to the Pumpkin Patch on a field trip and I was blessed to be able to go with him.  We had a great day playing on the "hay bale" playground, going on the hayride and picking out a tiny pumpkin.

However, such days are always bittersweet to me.  He is my world and after a while, our world has become what is "typical to me".  When I get to spend the day with 60 other "typical" kids, it is a real slap in the face to me as to how much my world has changed. I struggle with insecurities, fear, and anger as I watch a world go by me, that I no longer know how to live in "typically".

So, to all the Parents of the typical kids out there, here are 10 things I'd like for you to know, some are born out of my sadness and fear, some out of anger but I tried to finish in love:

1. I feel alone, all the time, even in a crowd. I can't relate to your parenting issues, like the 'my child is a picky eater because he won't eat green vegetables', because my child will only eat cereal, rice, crackers, and popcorn, period. I don't get to meet other moms at the Fall Carnival, because my kid can't handle the “over stimulation” so our going would be a nightmare for him and us. For the Mom who told me  how excited you are over getting OT, it took me a few minutes to realize that you meant overtime and not occupational therapy. You complain about your child taking forever to pick out their clothes, while my concern is simply getting my child to keep his clothes on. You guys get to to talk about the trendy fashions for your little ones at the best prices, and I'm still trying to find jeans with elastic and shoes with velcro at sizes that these things don't come in or that aren't so cheaply made they fall apart after one wearing. You guys are on a first name basis with each other from going to PTA meetings, catching up at the park, etc., I'm on a first name basis with all of the teachers, nurses, office scheduling coordinators, therapists, and doctors that we visit on a regular basis. So even in the midst of a bustling conversation if I'm quiet or don't say much, or just seem distant, it isn't that I don't want to be included, but I don't know how to contribute and I feel fake trying to pretend that I do. Or, I've freaked out the normals just one too many times, and I'm too tired to try and bother with trying. Sometimes though, I chose to sit in the corner by myself (just like my child) because it is just easier for me this way, I don't have to feel bad when I'm clueless, and you don't have to feel bad watching me try.
2. I'm insanely jealous of you.  It hurts me to watch my child painstaking build a pile of hay by himself to roll in as your children run and laugh and play together. It hurts me to watch your children go to the restroom, when I wonder if my child will still be in pullups when he is 16. Sometimes I mourn for him, as I know the taunts he will receive from your children because he is still wearing “diapers”, sometimes I mourn for me, because damn it all, I'm tired of washing 10 pairs of soiled pants a day and changing the sheets every morning, or looking at your glares, because it is obviously my fault that I can't get him to go potty by now.
3. I'm terrified all the time. What if something happens to me, who will take care of him like I do? What if he misses some therapy that would make his life better because I didn't know about it? What if he doesn't ever learn to use the bathroom? What if he can't learn enough social skills to get and keep a “real” job or even to have a real friend? Even if I live to be 80, who will take care of him after I'm gone?What ifs bombard me all the time, and there are no easy answers in my world.
4. I lie. When I say things like, “I don't know if I we can make it to the_______ (fill in with whatever event)”, it really means, “That is going to be crazy and chaotic, and he's not going to last long, and I'm honestly too tired, to have to cope with the struggle to get there, and get out before he melts down.” When I tell you the reason I don't call anymore is “That we're so busy I don't have time to think about calling until it is too late,” it really means, “We are so busy I don't have time to call you until really late, and if I did, I'd break down and cry, and nobody wants to listen to me cry.” When I say “It works better for us to meet at my house,” it doesn't mean that I wouldn't love to visit you, but he will cope better in his own environment, and I don't have to worry about what might get broken or how hard it is going to be to get him back into the car when it is time to end the visit.
5. I apparently do not believe in the same Jesus that you do. When you say something like, “God only gives you what you can handle,” or “God gives special needs kids to really awesome mom's like you”, or any of the other variations of those statements, it makes me totally crazy. First of all, I understand that you are trying to compliment me or make me feel better, or to simply say that you can't possibly imagine being able to survive a day in my shoes, but let me say, it makes me want to throttle the heck out of you. I do not have a super power gene that makes me better able to handle the situations that I find myself in any more than you would. I'm a normal mom, living in a stressful situation, with two choices; I can suck up and learn how to deal or I can choose to not deal and put my child in the welfare system. I chose to learn how to deal, at least most of the time. The rest of the time you may drop by my house to see me sitting down in the center of a pile of Lego's drinking a Pepsi or a glass of wine and mumbling like Goldie Hawn did in Overboard as the kids throw grapes in my face or sitting on my front porch in 20 degree weather crying after the kids are in bed because I've lost what ability to deal with life that I had and the anger and stress has gotten the best of me. If you must really be reminded about how God works let me sum it up for you, as it is written in the book of Job:

• Chapters 1-3: God allows Satan to take Job's wealth and health, because God trusts Job's faithfulness, God doesn't GIVE him, the boils, rash, or loss of wealth, Satan does. God trusts that Job will be faithful, no matter what happens to Job.
• Chapters 4-37: Friends and family give him some really sucky advice, which was mostly either “God did this to you, be mad at him” or “It's your fault, you sinned.”, neither of which are true. They continue to tell him he “deserved” this fate because he was sinful, which is ironic since both God and Satan both accept that Job is upright.
• Chapters 38-42: God enters the picture and sets Job straight, that humans can not possibly begin to understand the complexity of God's creation. God declines to give an explanation as to why good people suffer, apparently not wishing to tell Job that all of this was caused by Satan, who simply wanted to see if he could get Job to renounce God.

Now, I don't believe in a literal “Satan”, but I do believe that God gave his creation the ability to think and set up the world (and our bodies) to work in a framework that we call science. I do believe that God gave us our ability to think and make choices, whether they are good or bad, and that the choices that I make will have “effects” on others and myself , that may really stink. I however, do NOT believe that God sits around pointing at humans and going, I'm going to “give” that one this disability, to see if they will love me more. My child's genetics are more than likely at fault for all of this, yes, a creation that God set in place, but my child was not singled out by his creator to suffer. God did not give my child autism because I've sinned in the past or because he sinned as an infant. And please stop telling me that “God gives disabled kids to someone like you who is full of love”, because disabled kids are born every day to parents who suck and abuse their children. If that is the case, does that mean, God is picky about which kids are going to win the lottery of good parents? I don't think so.

6. I don't want to talk about what causes autism. So even if you bite that God didn't give my child, this disability, please do not tell me what the causes of autism “really” are. I read the latest research all the time and you know what, I have enough Mom guilt as it is, to have to listen to you tell me that my child has autism because I let him eat too much of a certain food dye when he was a baby, that I didn't breast feed him, or that I was too old to be having babies in the first place, didn't get enough zinc in my diet, was on anti-depressants when I got pregnant, had him vaccinated, or the hormones and preservatives in milk did this, mutated genes in the corn supply, or whatever you want to tell me about. I don't give a rat's tiny rear end what caused this, that is a moot point now. What matters to me, is what can I do to make it so that he can navigate in this world that he has to live in.
7. It makes parents of disabled kids crazy for parents of typical children to give us advice on how to discipline or raise our children. If we do things funny or different, it's because, “That's how we roll.” I guarantee you I've tried all the “typical” parenting methods, and if what we are doing seems crazy to you, it's because it's what we found that works for us. Also, I can't count the times I've heard, “What your kid really needs is a good spanking.” Let me just say, I can no more spank the autism out of him than I can smack the stupid out of you, so let's just move on.
8. It makes me cringe to hear you say things like “That's so retarded.” or “Yeah, I took a ride on the short bus today when I did.....” It's an insult to my child, because my child needs the label or the bus to negotiate life, it implies that our very real needs and struggles are a joke. And let me tell you, our needs and struggles are not a joke, not even on a good day. It's not funny and it makes you look like an ass.
9. But, don't be afraid to ask me questions if you are curious. I'd much rather hear you say, “I know that your son is autistic, and I really don't know that much about autism, I may not be asking you right, but would you be willing to share with me what it is like for you and him?” than for you to ignore me because you don't know what to say. I'd rather you say something stupid and obviously be trying to learn and understand our wild ride, than to say nothing at all.
10. I am extremely grateful to those of you who take a chance to reach out and help me when we are obviously struggling. It can be as little as letting us go to the restroom first because you noticed that the hand dryer was obviously a trigger to his meltdown or it can be as much as pushing my cart out of the store and helping me load my groceries as I struggle to carry him out screaming, or even just asking me, “I could see you were having a difficult time, is there anything I can do to help you?” Most of the time, I'm going to say no thank-you, but the offer is invaluable.  I am extremely grateful to the friends I have that offer their services at our home, like haircuts, because it will be easier for him.  I am grateful to the friends that don't mind to come to my house to hang out and accept my child for who he is and where he is, even if that means he is butt naked and talking about tractors.
    
    
    Thanks guys for those of you who try, and for those that weren't aware, I hope that you find something in my words to help you reach out to the next parent of a disabled child you meet.