Figuring out what I wanna be when I grow up.
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Monday, June 4, 2012

Where Is The Support?




I'm so angry right now.

So angry.  I'm so angry, and deflated, and crushed.  Do you know what I'm sick of?  I'm so, so sick of "WHAT YOU SHOULD DO" ideas, versus what's actually available.

Take FOOD, as an unrelated example.  All the time we see articles that say things like:  "We should eat 5 servings of fruits and vegetables today," or "Canadians are not eating enough veggies and fruit per day" and other "shame, shame, tsk, tsk" themed articles about all the good food we're not eating.  And then you go to the grocery store and find that FRUIT AND VEGETABLES ARE AMONG THE MOST EXPENSIVE ITEMS IN THE STORE.

So, if you're the struggling parent with only $50 to spend on groceries for your family of 4 or more, are you going to load up on fruit and vegetables, or are you going to buy that giant box of MINUTE RICE?

Should do versus reality.

Oh, parents of children with Autism, doesn't this make you think of the SYSTEM??  The grossly lacking system.

We hear all the time, that when children are diagnosed with Autism, it is of TANTAMOUNT IMPORTANCE that some sort of educational and behavioural modification happens before that kid turns 5.

Good fucking luck.

When I was in suburban hell, my son was diagnosed with "Autism Spectrum Disorder" at the age of 3 1/2.  I was advised to get him into a nursery school setting, where he could learn to emulate his peers, and be socialized.  I also applied for all kinds of programs, and I was on a waiting list for all of them.

The only organization that didn't put me on a waiting list, was a local community living group.  So, I had a young, lovely girl who came in to his nursery school, and tried to work with the teachers to see if they were implementing various things to help my son cope with school.

I took Jack for an evaluation with a prominent organization that provides IBI (Intensive Behavioural Intervention) services.  YES, they said, Jack does indeed qualify for IBI.

Oh, but so sorry--there's a 2-3 year wait.

Sorry about that!

And then I moved back home when Jack was five, and the new owners of our old house forwarded some mail to us.  There was a letter from this organization.  Congratulations, a space was open for Jack for IBI!  Hooray!  Oh but wait--it's for weekday sessions, and WHOOPS, Jack's in school and OOPSIE, YOU'VE MOVED.

Too bad, so sad.

Mostly I try to do everything myself. I'm so sick of waiting lists, and convoluted, confusing processes, and being overwhelmed with different organizations.  But, the kid still wears me down completely at times, and we still have a lot of things to work on in order to eliminate a lot of the strife in our household.  So, I caved, and tried again.

What I want is a social skills workshop for my son.  I would also love a respite program. I want to find someone who can really teach Jack how to stop going from happy to I'M GOING TO BITE YOUR ARM BECAUSE YOU SUGGESTED I SHOULD SIGN UP FOR SWIMMING LESSONS THIS SUMMER.

So goody, we're all signed up!  We did the rigamarole, and went through the middle man first to do the intake forms and find out what services are available.  And oh boy, there are some tantalizingly wonderful programs available!  Wow!  There's this social skills program which would teach Jack how to play with his peers, and they'd go swimming, and even go grocery shopping and bring back what they bought and make up a meal and...

OOPS, so sorry, there's a ONE TO TWO YEAR WAIT.

Sorry about that.

I'm pissed.  I feel like crying.  Am I supposed to be satisfied that there is ONE EDUCATIONAL ASSISTANT to serve Jack's entire school?  Is this GOOD enough?

I want to get on the phone right now with the go-between group we had to contact and tell them this is unacceptable.  We need something NOW.  I'm too angry though, and I might not do a lot of good in this mood.

If Autism is on the rise, if it is so much more prevalent now, supposedly, than it was 20 years ago, where are the services?  Where is the support?  How many mothers are sitting on the stairs crying, because they just wanted to go out and buy a bag of milk and their child is having a melt down?  Again?  Like Yesterday, and the day before that and the day before that and the day before that...

It's not enough.  It's just not enough.

33 comments:

  1. i've heard this from so many moms who have kids on the special needs scale. i haven't even bothered to apply for anything because of this very reason. it seems like an exercise in futility and frustration.
    therefor, i try to do everything myself. i am the counselor and the teacher. but i don't know everything. i haven't been trained enough myself, so how can i train her?
    i just looked up on your page here and in the section where it says, "You might also like:" it suggests "Whisky. It's The Only Answer."
    lol! let's drink to that!

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    1. Damn it, some things hold true forever! I LOVE YOU, WHISKY! Actually, I had 2 Crusty Wives last night, and felt good about life. But, that was before this retardation. Sherilin, I am the same as you: mostly I take on everything myself, but then sometimes I worry (often, I should say) that I am inadequate, so then I go seek outside help, and get PISSED OFF all over again.

      Delete
  2. Tonight, I'm going to get drunk enough for the both of us! Just in your honor.
    Take care.
    m.

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  3. I think you need support. You need respite. Is there any way or is there someone to whom you can use to give you a break? do you have family or a babysitter to be able to get out of the house for a while? This won't solve Jack's issues but clearly you need some nurturing yourself. I think it will take years for the system to catch up. Clearly, they are as back logged and befuddled themselves with the rise of this disorder. As with many groups, (brain injury societies as well) they are backlogged...my daughter is on a waiting list now for like 6 months to be assessed just to be a part of the society.

    ReplyDelete
    Replies
    1. 6 months! ARGH! I feel your frustration!!!!

      Well, the kids go to my inlaws for a day nearly every weekend. That helps a lot. I wonder if they think I'm avoiding them, as I more often than not do not go, but the truth is, I need the break! My dad is starting to let Jack hang out at his house once in a while when he's not out, so this is good. Gee, maybe my dad could be my respite worker.

      I hate this system though! You're right--they are inundated and therefor backlogged, but it's so frustrating, especially when some half-informed arse writes an article insisting how IMPORTANT these services are.

      Delete
  4. Hi. I've been reading your blog but never commented before (i don't think). I had to let you know that IT DOES SUCK! There isn't enough support. There aren't enough resources and our children are not getting what they need. I've been caught in that same whirlwind of waiting lists and bad therapy times and we make too much money to qualify for this but not enough to pay for it ourselves and and and and. I've cried and I've vented on my blog and I've cursed the gods. In the end, I keep trying because I feel like I am failing my son if I don't because all the "experts" tell me that these are the things he needs. Maybe I'd be better off spending my energy elsewhere. I don't know. You are not alone in this by a long shot. I'm sorry!

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  5. Thank you Deenie. I appreciate your comment very much. You've made an excellent statement that I was thinking, but didn't communicate as well as you:

    "...waiting lists and bad therapy times and we make too much money to qualify for this but not enough to pay for it ourselves"

    Yes, yes, and YES!!! I have received those letters as well. And you're right: we feel like we're failing, because we don't have "EXPERTS" working with our kids. Maybe we don't give ourselves enough credit.

    I think the biggest problem is that as parents, we are TIRED, and we need help. Otherwise, we would do it all ourselves. It's always good to get that fresh other perspective as well...that is IF you qualify for it, and can access it!!!

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  6. I shall drink with you. Do you have an advocate or someone who has manipulated the system to help you get what you need?

    I just did our first IEP this year and if I hadn't had someone who knew "the game", I would have been totally railroaded.

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    Replies
    1. I do not have an advocate, Lisa. I wish I did! It's sad that if we don't know "the game", we're screwed!

      Ah, the IEP. It's super yucky at first, but sucks less afterward...well, I thought so anyway.

      Delete
  7. I hope you know that it is not just in Canada that it is frustrating for children with special needs. I remember my girlfriend wanting to beat her head against the wall due to trying to work with the system. She did say though that the parents are the best advocates for their children because they know their children the best. Karen, I am just a border away for some garden therapy. I will trade you some Crusty wives for some flowers. Sorry it's been so hard for you.

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    1. Yes Alaina, I know that services suck in the U.S. too. I've heard other ladies with special needs kids lament the same thing in their blogs.

      Ah garden therapy! That's exactly what is needed. Thanks, Alaina.

      Delete
  8. Move to Alberta. What a awesome province. Our very good friend has a brother who left crappy BC to get a fantastic job in Alberta. They have three girls and the second one has extreme autism...can't talk. Anyways they get so much money and help for her! Just amazing the respite they receive.

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    1. I hear the odd story around here too, Pam, whereby someone is raving about all the services they got hooked up with, and this organization was WONDERFUL and blah, blah, blah. Maybe some luck will come my way.

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  9. I cannot imagine how hard it is.I want a drink just to get over YOUR stress!
    Poor darling,you are a wonder in that you DO manage to go on,day after day.
    XXXXXXXXXXXXXXXXXXXXXXXXXX

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  10. I agree. Move to Alberta! I'm sorry but what utter bullshit. The goal of this world and every parent should be to work together to create functional people. But I'm of the mind that people (the system) still believes that a parent should be able to do it all and do it alone. That is impossible. Parents 'burn out' and so do the children! Autism is on the rise. This country needs to get it's shit together to help create strong support. Fight, Karen! Don't you give up! You, Jack, and your whole family are worth it!!! (I wish I could help.)

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    1. you're right Leanne: we SHOULD all be working together. I hope that what others have said is right, and that the system just hasn't caught up yet, but jesus--this isn't a new "fad"!!!

      Delete
  11. You think that's bad? I git a lousy haircut!!!

    Darling, like Helga, I have nothing but compassion and empathy for this shitty situation. I have no idea what it's like to be you. I know what it's like to be me and to have had similarly frustrating situations, but it's very different when it's your KID. So I have no advice, but I will tell you that you are an absolute ROCK STAR and Jack is super duper lucky to have you as his Mama. And we are all lucky to have you as our blog friends.

    Big hugs, biatch. Sarah xxx

    ReplyDelete
    Replies
    1. And Sarah, I totally feel your stress on your stupid haircut! What was the moron with the scissors thinking?!?
      Thanks for your lovely words. You rock too.

      p.s. why was I so delighted to be called 'biatch?' Because I AM!

      Delete
  12. Oh Karen, what a load of crap. I am sure they understand about you needing breaks. When Kiddo was younger and had her seizures, I had to be with her all the time. Even when she took her bath. It is tiring.

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    1. Ruth, it is tiring indeed! It's the emotional strain of it all, isn't it. I'm sorry you and kiddo had to go through that!

      Delete
    2. She outgrew them, which is a blessing. I hope you can get the help you need soon. My nephew is on the spectrum and someone really dropped the ball-the mother or the dr, probably both- but it doesn't really matter. He's 18 and has gotten no help.

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    3. yeah, and that's what I'm afraid of!!! I'm happy for your daughter though!

      Delete
  13. I have had a very minor, less draining experience of trying to get some help from "the system" (when Littlest was first born, we've since realised we are Ok and can manage without any help, but we really needed it at first). Even as 2 committed parents, who are reasonable intelligent, articulate and assertive, it was SO hard to make any headway. And as you say, we were told we needed support, yet when it came to it, there wasn't anything that really fitted the bill.
    Your situation is way more stressful and relentless than ours, I can't believe there aren't better support services out there for kids and families with autism. Waiting months/years is no good when families are at breaking point NOW.
    I don't know what you or anyone else can do, apart from make a nuisance of yourself by repeatedly telling anyone who'll listen that it's not good enough. Because it's not.
    Sending you love and encouragement and a great big DRINK! xxxxxx

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    1. thank you Curtise. Your support is always wonderful. Yeah, maybe I'll become that nuisance! Now let's have that drink together...

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  14. I am so sorry... please put taking care of your selve on your to do list.
    It is all so unfair towards our children and makes me so angry to realize that everywhere seems as bad.

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    1. It is frustrating isn't it! I do try to take care of myself. Like right now--the kids are at my inlaws for a sleep over and I am FREEEEEE!!!!

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  15. Oh amor,
    I'm so sorry your going through this crap.
    You have to keep insisting and make complaints.
    Give them hell!
    Besos

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    Replies
    1. You're right! I will give them hell! Thank you for your kind words.

      Delete
  16. argh! You poor thing, support is seriously lacking isn't it? :( XXXX

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