Wednesday, June 15, 2011

Asking For Help .... What Constitutes An Emergency?



https://www.facebook.com/note.php?note_id=226735867354221
You know how they always say, you gotta know when to ask for help... Well what happens when you ask and nobody responds?

I wrote in a previous note about how the wife and I are selfish and like to go out alot and we rely on family to watch Kyle. You can read that note at
https://www.facebook.com/notes.php?drafts&id=163509233676885#!/note.php?note_id=216005818427226 However, when I said that we rely on family to watch Kyle, what that really means is that 85% of the time we're relying on young family members (niece, 18 & cousin, 24) whom we would pay (and pay VERY well in my opinion). Both of them are now too busy to watch Kyle, hence this note.

The reason we went the route of paying young family is that this way the wife and I wouldn't have to ask our brothers & sisters to watch Kyle because in the past they haven't always stepped up as much as we'd like...

Now don't get me wrong we have an AMAZING family. They accept Kyle. They love him, They get him.

They almost all live within a 60minute radius of us (most live in a 10 minute radius) and we see them all the time. Holidays, birthdays, summer BBQs, etc. All our brothers & sisters (both the wife's and mine) and all our parents are completely in our lives, and we love them dearly.

They say they will always be there for us. In an emergency they will drop everything and be there for us & for Kyle.

But what constitutes an emergency to us, doesn't always seem like an emergency to them.

When we've just had a typical week of dr appointments, therapy sessions, arguments with the insurance company, arguments with the school district, and Kyle meltdowns & tantrums we could use a night out. By the end of some weeks, it IS an EMERGENCY. We need to take a break from Kyle and perhaps more importantly he could use a break from us.

But when we ask our sibs to watch Kyle, we don't drag them down into our muck. We'll just say, "hey can you watch Kyle on Fri nite so we can do dinner & a movie" And we'll often hear back, "sorry Johnny has a softball game and Lucy has band rehearsals...but definitely another time... And I'll say "How about Saturday nite? Sunday?" and hear the same kinds of things..

We don't want to be a burden on our families. But I almost feel like we'd be better off if they saw us have a complete mental breakdown or panic attack right in front of them for them to understand that any typical week for us when you are down in the trenches 24/7 can be an emergency situation.

I think because the wife and I try to plan fun things (Foo Fighters concert, broadway play, dinner & a movie) that our siblings take it as that's just your typical parents wanting to get out for the night.

Also the few times they do watch Kyle, they see what we present to them... I think because the wife can throw on makeup and look amazing when we go out... And because we can talk & laugh with them about the week's crazy Kyle events, they see... A happy couple ready for a night out... And they don't see it as helping us out in an emergency....
So maybe once or twice a year, when the shit has really hit the fan and when we’ve been turned down by our sibs a few times, I'll secretly write an email behind the wife's back telling them all the things that are going on with us & Kyle and explain how stressed out we are, and how we really NEED them to step up. And things get better.... for a few weeks.

You would think that after several emails like that ASKING FOR HELP maybe once, without even us asking, maybe one of them would call us up and say "we're free tonight, why don’t we watch Kyle and you guys go out". Never happens. Even after emails like these, we still have to make the first move and throw out some possible dates.

And again the fact that we have a GREAT time when we go out & come home happy & a little tipsy and tell our sibs what a great time we had... it doesn't feel like they helped us out in an emergency, but most times they do...

And let me take a step back and say that while I've written alot of things about Kyle on this page about how hard he is to handle lately. But he's really not that bad. I got to write a separate note about him soon. He is such a sweet kid with a smile that can light up a room and warm your heart. (more on that later :-)
So, he's really not that bad to "baby sit" at our house. I mean most gigs watching Kyle would start at 7pm at the earliest and he's asleep (thanks to melatonin) by 9pm and he sleeps thru the nite.

So we are really, most of the time, asking our family to watch Kyle for 2 hours, 3 tops. Feed him dinner, read him some books, let him watch tv, follow him around, take him to the potty, wipe his butt, and put him to sleep.

The rest of the nite from 9pm on, they are free to sit on my couch, watch my tv, and eat my food.
Maybe that's part of the problem, right there. Maybe they watch Kyle for 2 hours while he's awake and think, what's the big deal? Why are so they stressed out?


I don't know if that's what they're thinking... I'm just guessing at all of this.

All I know is that I wrote another one of those emails last night to our siblings. Said we need to get out once a week, and once again, put the ball in their court. We'll see what happens...

Now I know there will be people who read this who have NO support and believe me, I know that we may be luckier than alot of people. But again, I'll go back to the beginning. We are lucky (and smart) that we know when to ask for help, we are lucky to have the people in our lives who can help us... now we just need them to step up...

And if you are a FB Friend of mine and you also know me personally. I believe there are 39 of you. :-) Please do not report back to my wife or any of the people that I may be talking about in this note. I don't want any of this to get back to any of them. This is just my outlet to write shit down and work things out in my head.

Thanks!

That is all...

Over and out...

6 comments:

  1. I totally get where you are coming from....I think it is essential to take time for yourself. I also have family members who just don't get it when I say, "Just one night is all we ask." I remember watching their kids all the time; but now that I have kids....Fortunately, I work at the YMCA now and we can choose to do the Parents Night Out thing there. I also totally get what you're saying about him being a great kid. Mine is to, but wow, if they really knew what our struggles were for real, our family would be in shock! They say with their mouths, "Oh, I understand!" And I want to shout, "No, you really don't!" Merry Christmas!!

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  2. I grew up with a very close family, then when we married and had "B" we moved across the country where we had no one. When he was a baby, it was so simple. He has Down syndrome as well, and was the happiest and most interactive little guy. Everyone loved him to death. We didn't NEED date nights, because he was happy everywhere we went, and could be together WITH him. This went on for years. Then the autism reared its ugly head, and he started stimming, then hitting himself over and over, and eventually others. Now that he is 11, he is still non-verbal, not potty-trained, and still aggressive. We keep losing home workers, and haven't been on a date for at least 6 months. It is starting to seriously wear us down, and it is impossible to ask for help from family. They don't even know him anymore. I wish I could declare a state of emergency, but to whom? We are just going to keep plugging along, and hope things look up soon. Thankfully we have a strong marriage and the bond is still tight, but it wasn't always...being able to have dates healed us. Crossing my fingers.

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  3. I'm glad I came across this blog. My husband amd I have a typical daughter, 10 and a son with autism, he'll be 7 next month. I can count on one hand the number of times my husband and I have gone out together since my son's first birthday. That's when he was no longer a cute baby that everyone loves to snuggle. I should add that my boy had a fetal stroke, so before being diagnosed with autism, he was diagnosed with moderate brain damage affecting his motor skills. He didn't speak, crawl, smile.. for the first year he almost never even cried. Afyer that first year.. my husbad and I were on our own. These days, our son is walking, signing a little, pointing quite a bit, not sleeping at nightand screaming at the top of his lungs every chance he gets. He dropped his biting habit a short time after almost ripping off one of my nipples trying to wake me up in the middle of the night. My mother said to me once "he's just too much for me to handle. How can you ask me to watch him just so you can go out to dinner? It's cheaper to eat at home anyway!"
    The inside outsiders (how I refer to family) don't seem to comprehend tjat if a few hours is hell for them.. imagine the 24/7 we live through. I think time away from home together IS am emergency. Most of our family members will say "anytime you need a night out, let us know." Then when we ask, it's never a good night. When someone agrees, they almost always cancel at the last minute. I love my kids. I adore them. My daughter hasthe most amazing heart amd she loves her brother to the moon and back.. and he loves her, like I've never seen a brother and sidter love each other. My son is amazing. The things he accomplishes every day are all celebration worthy. His laugh will stop us dead in our tracks and we'll all start giggling at that delightful chuckle he has. He's absolutely brilliant. He can kick all our butts in fruit ninja and angry birds.. and he brings me to tears every morning when he puts his hand to his mouth to symbolize blowing me akiss.
    My husbad and I both work in a field where we witness child and domestic abuse on a daily basis.. so we have never been comfortable hiring a sitter as long as our boy is non-verbal. We see first hand what "could" happen, and just aren't willing to take the risk with our beloved boy.. but we're just at the end of our rope. We ask for help so rarely, but feel like we're asking for a million dollar loan, not one night of babysitting.

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  4. Dear AD,

    I completely understand. Sometimes you have to just hit the SOS button and get families' if you are fortunate enough. I'm the only one in the family able to manage my niece (now 9) and her wild behaviors at times. But the days you see her reading, laughing, dancing and smiling like she does makes it all worth it. Aside from the complete public meltdowns where the kid tries to rip her clothes and scream on the top of their lungs like an incompetent parent or care taker (like you have no control). But to heck with the world, it means the world when care takers and parents don't give up in their children.

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  5. Playdate Exchange, try it! Have your wife talk to her mommy and me pals. I'm sure many of them could use a break as well... its not easybto find sitters. The idea of play date exchange is to get a family to have kid sleepovers while the parents get out for a bit. So say Kyle sleeps over a friends house, then one night you swap the favor with the family who had a playdate with your child and theirs. Its a win-win for both families. The kids get to engage in some social interactions with other kids, as well as learn to accept other social environments. No families lose money on a sitter and you can also ensure the security od your child(ren).

    Good luck, hope this makes sense and helps.

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  6. Hi, I'm new and enjoying your blog :) I don't have an asd child, though I am a mum and there are asd kids in our extended family. This kind of saddens me, to see this written. I'd like to think that my family members are honest and open with me about their struggles. Obviously, in case of emergency I'm there in a shot. When it's not an emergency then I have to triage - is the family members having a night out more important than me having a chat with my daughter about the kid who is bothering her in school? Is it more important than the only evening I can spend with my partner this week because he's working late shifts? Is it more important than catching up on the reading for a work assignment?

    I'm not selfish, though it may sound that way, I'm actually usually the one who gives and gives and gives and ends up with no time for themselves in my family. Also, parents of non asd kids have weeks where it's an emergency for us to get out. I (literally) went bald and came out it a horrible rash a couple of months ago - an autoimmune response to a VERY stressful fortnight in which my child had been hell on earth and everyone around me had been asking a lot of me - coupled with all the underlying worry of the stuff I had neglected that *really* should have been done by now... So, yeah, non-asd parents get weeks like those too, and sometimes I wish someone would offer me a night out too :)

    I'm not minimizing your struggles, or saying that parenting an asd child doesn't present phenomenal challenges - just that all parents are struggling along, doing their best and have a mile-high to-do list that only ever seems to grow with things to be done "when I have a minute". So, every minute we get is spent on keeping afloat.

    I guess what I'm trying to say is that it's churlish and unfair to pretend everything is fine then be secretly mad at family for not rushing to your aid (and I do it too).

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