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July 16, 2012

Do you ever just want to give up?

Its been awhile. I haven't written or done a show in ages.  I just needed to vent. My children are growing everyday into young adults and I feel as if I have failed as a mother in so many ways. I try to make the best decisions, but sometimes, even my best efforts are not enough.

Summer is traditionally a hard time. No school.  The kids have ESY (Extended School Year) until noon, but because of the lighter schedule, their energy just seems to be boundless.  I have two young adults and one child and the fighting and bickering is intense.  Verbal, no, but the screaming and crying is enough to drive me insane. I feel limited to the house due to an incident earlier this summer where my youngest left the yard and went on an adventure.  I had to call the police to help find her.  My neighbors were fabulous, everyone pitching and volunteering to look for her.  I was so impressed and thankful to be around such caring individuals.  The next week, my two oldest wandered away from me at Walmart for over 20 minutes.  I am not negligent, in both cases my attention was diverted for mere seconds and they were gone. My kids need 24 hour supervision. I can barely leave the house to put the trash cans to the curb without returning to a mess, an argument or whatever.

There is a storm in my home and I have no idea how to quell it. Limited finances and the oppressive heat make it difficult to go out, so it feels like we boil inside. For the first time, I feel as if I am not equipped for this. Because I just moved back here, I do not have all my support systems in place, i.e. wrap around and respite.  I have my parents, who are always helpful, but I don't want to rely too much on them as they are getting older and they are entitled to some child free time at their age.  They raised their children, I guess.  Sometimes I feel as if my childhood is extended, because of how much I rely on them.

As an advocate, admitting defeat or a less than positive mental outlook feels incompetent. The challenges I faced when my children were younger seem like minor bumps compared to what I am going through now. Its mostly emotional and mental. I am really questioning what kind of future they can have. Without language and social skills, this world is hard to navigate. Some days I feel trapped, even with positive things happening in my own career. I would give anything for them to progress. Writing is an outlet.  I don't care what others think of this post.  I just feel so alone. My husband, as an extreme secondary caregiver has a great attitude about it.  He is not here most of the time. He has the amazing ability to under view the situation. He feels I am extremely tense and believes it is my attitude which is effecting their behavior.  He is probably right on some level, but when do I ever get out from under the pressure? The most I have been away from my children in the last three years has been 2 days. And when I am free I can barely decide which loose end to tie up.  Should I clean up, should I pamper myself, should I organize my mountains of paperwork?

The funniest thing I ever heard was when I went for an intake assessment for one of my kids to get services. I was inquiring about a greater level of service that may be more effective for my situation; having the 3 diagnosed with autism.  You know what the evaluator said to me?  She said, "oh I have at least 20 other families in your situation, I am going to see a family with 4 kids on the spectrum after I leave here, you are not alone." How the hell does that information help me?  Is just the sheer knowledge that 20 families are feeling just as isolated, scared and under-equipped as I do, supposed to make me feel better about my situation? It doesn't. In fact I now feel sorry for them too.

I have tried to justify and give my circumstances a purpose through hosting the radio show and writing this blog and by creating a non profit, but it doesn't take away the ache. As I watch friends and cousins children grow up and mature, play sports, talk, date and just plain live, I feel as if my parenting experience is flawed and invalidated.  I have mentioned feeling like a genetic failure before and it has never hurt so bad as it does now.  Its getting harder and harder to explain away the loud screams and strange verbal exhalations.  I scowl at the the other patrons in the stores as they look quizzically at my children. I border on verbal assault to the overly friendly people who try to talk to my kids when we are out.  I hate that sickening silence when they ask my children a question and there is no answer.  I just let it hang there and I watch how they socially navigate a child just staring at them with no intention of giving a response. I get so tired of saying "he/she won't answer you, they are autistic."

I'm already tired and this is just the beginning. I don't even want to be around other parents with autistic kids. I feel like they are coping so much better than I am. I know that may or may not be true, but I don't feel like comparing notes anymore. I am hard pressed to find the beauty in what my kids do.  To explain away their differences as blessings, eccentricities, and challenges.  They are disabled. It doesn't mean they can't ever do, I know that. But really in our society how far have we come in really integrating, accepting and embracing people with disabilities?

I blasted someone on Facebook for making a senseless remark about people with autism being genetic failures? Not just for his total disrespect, but because, even with three related children, I still feel that they are injured individuals suffering from a reaction to chemicals which they should have never come in contact with.  But what is that?  Is that just crazy to believe at this point?  Here I am, a poster family for a genetic cause of autism, still rolling with the vaccine injured crowd. Keeping them on the gluten and casein free diet because of an improvement I saw years ago. Not getting them vaccinated for fear they could get worse. What the hell am I doing? Let them eat cake! Right? Wrong? I don't know.

I write this not for anyone's pity or awwws, I write this because I must. Nothing is worse then the pity I receive when I happen to tell outsiders about my kids. I have become such a hard mother. I don't even feel any tenderness in my heart anymore.  I feel like a caregiver, a nurse doing the same things everyday.  "Time to get up-time to get dressed-your shoes are on the wrong feet-stop crying-your shirts on backwards-stop hitting yourself-take that out of your mouth-quiet hands-settle down-focus-close the door-get out of the refrigerator-wait-stop-lets go-time for bath-good night."  Barking off one word orders repeatedly. Wondering why they didn't get it 4000 times ago.  Wondering why my kids lose their skills faster than they gain them. Beating myself up for moving away, throwing them all into regression and sub par schooling. Wondering why it takes more than a mother's love to heal their wounds. I tire of asking the same questions and getting no answer. Plain old obligatory parent questions like; "how was school, are you okay, why are you crying, are you hungry, does it hurt, do you know that I love you? Please tell me something, anything. Then there are the moments when they do answer and I keep asking them that same stupid question over and over just to hear them say it again.

Things aren't supposed to be like this.  They aren't supposed to feel like this.  I hate myself for emotions I can not create and more so for the emotions that are truly there. I want so badly to see the peace and joy and meaning of it all, but I don't. I really don't.
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