09 July 2010

Anyone Else Out There?

I'm going through an awful time. I'm very bitter about it.

I'm starting to realize that things are always going to be hard for me. That they may get better than they are now, but they will never be ALL BETTER. I don't mean the perfect all-better of heaven. I mean all-better enough to pass for normal. Family outings. Pleasant conversations.

I will never be able to take Woodjie to a restaurant and have him behave. I will never have a friend who wants to come over and spend time with me. My children will never have a regular playdate.

And worst, worst, worst of all is that no one will ever help us in our difficult situation. I don't even have a family that understands.

I know... it sounds like a lot of woe is me going on and Mrs. C needs to just get over it. But I'm upset.

I'm upset that here I have the diagnosis I need to get services, but I'm too rich to get the services that we all pay for poor people to get. I have insurance that should cover the stuff Woodjie needs, but it DOESN'T because of the magical loopholes of the law. So tough crap for Woodjie. Tough crap. Pay for everyone else's Medicaid, and pay for everyone else's operations and stuff through private insurance, but get NOTHING back for Woodjie.

Nothing. Yes, I believe businesses should be able to conduct themselves as they please, but I also think that if I'm paying for poor folks to get something that is not covered by my insurance, but is prohibitively expensive, that it's rather unfair to give the Medicaid recipient $27,000 for services and Woodjie, the child of real-live taxpayers, should receive NOTHING because his dad was a fool and did that "job, savings, insurance" thing.

I'm telling you, it's a devastating feeling.

I'd probably love to go and enroll my child in a preschool in the hopes that someone, somewhere might at least *help* us teach social skills to Woodjie, or help us with potty training. I know when I'm in over my head. I'm willing to admit it... I need help. I'm trying and trying but this is NOT happening. I guess I had no clue how to potty train anyone. I have these four older children who can wipe their own bottoms and stuff... but now I realize I have NO CLUE how to teach Woodjie. I checked a book out of the library on teaching autistic children this skill and they say brilliant things like "wait until the child is developmentally ready."

Arg!

Do you think anyone wants to take Woodjie? Um, nope. Even the PUBLIC preschool is talking about setting up daycare after school, but they specifically exclude children that soak up staff time. Children like Woodjie.

Dang, if anyone is going to (supposedly) champion the underdog and the oppressed, it should be the public school. Nope. They want to empower working moms to leave their easy-to-raise children in an institution for the "socialization." Children like mine who really DO need extra help with socialization and really COULD benefit from someone who has special training? Can go rot.

Not that I'm bitter or anything. Well, I'm more than a little bitter. I feel like no matter what I do or where I go, we're discriminated against. Mrs. C really needs to snap out of it and somehow manage to do everything here at home. I need to make my home a more pleasant place physically and emotionally. Lord knows with my bladder, as Woodjie ages I will not be able to even leave this house, so might as well make the best of it. Think I can leave Woodjie outside the public bathroom door alone at 13? Or do you think I can take him in with me? Ha. I'm overwhelmed thinking of things like "how to get groceries" later, even if the funds were unlimited.

And I'm looking at my likely future and I just can't get past it. I'm starting to leave clutter on the sacred dining room table because I reason I will just get it messy tomorrow. And who cares. If you know me, you know that means I am seriously, seriously depressed.

My child is three! I should be enjoying the snuggles instead of crying and screaming.

Ok. I could watch some YouTube videos and do cheap Wal-Mart therapy here at home. If I had a bit more time, I might even get good at it. But I am really having a hard time with the potty thing and some of my web searches haven't yielded what I have expected. Dear world, YOU ARE SICK. Go get some help. Really. I should be able to google stuff about autistic boys pooping in the toilet without all this.

And parents, I appreciate some of the very hard postings you made of your older autistic children. But you might want to disable comments next time. It just burns my soul to see you expose your children and your lives like this, and then read "retard" and things like that in the comment area.

I see my future. I want to change it so, so badly.

Howcome other parents of seriously affected children are much more cheerful? Do they go through a really hard time and then feel better?

Because I'm going through a really hard time.

16 comments:

  1. Mrs. C,

    I wish I had words of wisdom, but I don't have the experience of an autistic child in the house. If it makes you feel any better, even those of us with 'normal' kids have our days. And, I have one (not the babe) that was still having toileting issues in the not too distant past.

    Not sure if the cheerful parents you mention aren't just putting their best foot forward and not admitting to the daily struggles. Or, they might be at a completely different spiritual level than some of us and have reconciled themselves to the path ahead.

    What I can do is keep you in my thoughts and prayers.

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  2. Doing what I can from the other side of the world: (((hugs))). ♥prayers♥

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  3. I am sorry that it is so hard .. and that today seems very bad. But, all kids will / do learn things and eventually will take more and more responsibility for themselves. Just remember that I love you and am sure you will find the way to help them. Dad

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  4. Hugs and prayers from here, too. My heart aches for you.

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  5. I wish I could come to your house and spend time with you and your family. I'd feel blessed to have someone like you in my life.

    Don't tell anyone but my 3 year 7 month old boy is NOT potty trained yet. I feel like I'm just not doing it right or something. I successfully trained 3 girls in no time and without incident but I can't get this boy to poop on the toilet for the life of me.

    I wish I could give you a big hug.

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  6. I wish there was some way I could help outside of praying that you have a better day tomorrow. Since I don't have crystal ball, I can't tell you with any certainty when it's going to get easier, but I do believe (because you've already proven that you are a strong person) that with time it will. It's a small (probably no) comfort now, but someday you will have something to share with a younger mother that's going to make her feel less alone and less like a failure because you're going to know exactly where she's at and what she's going through. Meanwhile, (and I'm aware that it's very easy for me to say this as a near stranger), if you haven't already, you need to tell your husband that you aren't handling things well at all, that you are depressed, and that you need to find a support group for parents who are going through this. A place where you can see all those supposedly cheerful parents of seriously affected children without the masks they are most assuredly wearing. Please don't let pride be the thing that keeps you from helping the helpmate.

    As per potty training--For what it's worth, most of the parents I've met (and liked) will tell you that they don't know how to potty train either neurotypical kids or not. That every kid they had was different, that every time they thought they'd found the magic formula and began writing their own "how-to" book in their heads, the next kid completely un-wrote it. I think those who claim to have the answer for all children have either a) no children or b) one child or c) two exceptionally easy children. I did not add to the list those who chose to beat their children into it as they don't deserve to be here (or anywhere).

    I potty trained four. I have no idea how we accomplished it--every single one of them potty trained at a different age, with two of them closer to five than I care to admit.

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  7. As I'm reading this it's exactly how I felt yesterday. I have 2 children both on the spectrum but my daughter has tons of medical issues and now an mr diagnosis too. She's 7 and not potty trained. she was in underwear at age 2 and using the potty fine and then she started preschool and refused to go near the potty. She began getting therapy in the home when she was 19 months so it's been therapists in my house for 5 1/2 years and I can't take much more. This is not my home, it's just a house. Not a place to relax or de-stress. My thoughts and prayers are with you as I can understand your pain.

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  8. Pamela was 6.5 years old before we potty trained her. She was very much non-verbal at Woodjie's age and cried and melted down a lot.

    It is a hard life. But, I bet you would not have guessed that by looking at our blog posts of use doing a butterfly study. She has come a LONG way!

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  9. HUGS !! I have no experience with Autism, sorry. I wish we lived closer, because I would come over and chat with you !

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  10. hi

    stumbled here off a link from life in a shoe.

    i have 5 year old daughter who is on the spectrum with some type of autism. was also almost completely nonverbal at 3.5 only just potty trained 6months ago (at 4.5). i would love to chat more privately if you would like to email me - i think this gives you my address?

    i found a lot of help on the special needs board of mumsnet - a british mums forum. toilet training stuff etc - loads of stuff - more than i found on the net elsewere.

    i am a homeschooling mum of 3 (m5 year old is my middle one). its been hard at times but i have learned to trust my instincts and what i can do and teach my daughter. with much prayer and patience we have seen a huge amount of progress in our daughter. just letting her progress in her own time. going gluten free has also made a big difference as has fish oils.

    god bless you and your little boy. i pray for healing and breakthru

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  11. Thank you, everyone, very very much.

    Michelle, I do not have your email address from your posting. Older posts are moderated, so if you want to leave it there, I won't publish it. Thanks.

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  12. Mrs. C, I'm catching up on my RSS feed finally. Brittany told me about this last week.

    I'm so sorry for the struggles. Hang in there. We'll be praying... which feels totally lame because you need some physical help, and I wish I could. Unfortunately, I've got nothing more to offer you except a digital hug:

    [hug]

    ~Luke

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  13. I hope that just by writing how you feel has helped you. Peace to you xx

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  14. My heart goes out to you. My two kids are officially "normal", but we had bathroom issues with both past the age of 5. One was due to stress, and the other was medical. It was one of the reasons we began homeschooling.

    It makes me sad that "friends" don't want to visit.

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  15. I know little about the US situation and yes I do know it depends on th generosity of the state. However does your local Autisms association offer help and advice to you to help you get in home help for you son. I have tow on the ASD and i know it is very hard and depressing work at times. I read autism news and understood many state legislatures were making the private health insurance firms pay for all manner of autism therapy which formerly they could deny.

    Karnak

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Non-troll comments always welcome! :)