Oh weekends how I love to hate thee

[mattblakk]

I find weekends to be supremely difficult sometimes.



Blake has at least one super huge meltdown. He just finished crying for over an hour, and seems to have once again found his center. I find those marathons very trying.

I'm not sure anyone gets it who hasn't survived the adrenaline inducing scream of your child over such a prolonged time over and over. (and I am quite literal about the adrenaline reaction being produced when Blake screams. . . not sure why it happens but I find it quite unsettling.)

Logan's surprise party appeared to go off without a hitch. Blake managed to last at Logan's house for about an hour and a half. Of course that meant he was ready to leave just as soon as Logan got there. I think Logan was happily surprised, but I'm pretty clear that the rest of the people there either didn't understand what autism is, or were full of the plastic pity face. I'm pretty clear that the level of social control expected by that group of people exceeds Blake's ability by several factors of 10, so I just made sure Logan got all his goodies and left. I feel bad, becuase Blake was so happy to see Logan. He didn't really pay attention to or look at any of the other people, but the minute he saw Logan he climbed right into his arms and stayed there for quite a while. Such a sweet thing to see. Sorry more people don't get to experience that side of Blake.

Once home, Blake went in to full-on scream fest mode. Glad that's over for the next couple of days.

Clearly Calgon isn't strong enough. I hate to feel guilty for even talking about this. I'm making myself do it, because I clearly can't do this on my own. And since I can't have people over to commiserate with me, I will let you all choose whether or not to read and interact with me on this issue. You are reading my journal, after all.

So, I'm a very social person by nature, I used to love to go to parties and talk with people. I guess the best way to describe them now is that they don't feel particularly safe places to be these days. I feel really emotionally vulnerable right now after having only been there briefly surrounded by people I don't really know.

I guess it's just realizing how much my life has changed to meet Blake's needs. Perhaps there will be more interaction someday. Until then, the virtual sort will have to sustain me. Sad, though.

Comments

[asssssssssp.livejournal.com]

Yanno, parenting in general is enough to break the stoutest spirit at times. Parenting a child with autism is a whole nother thing again on top. I don't really know what i am trying to say here other than I have very close friends parenting children with autism and I know of what you speak from that close involvement. The whole world needs to KNOW what its all about. My very bestest mate of nearly 30 years who is godfather to all my kids has two boys under 6 both with autism...come to think of it, you'd love this guy...damn tyranny of distance.

[mattblakk.livejournal.com]

I just need to finish my degree so I can close the gap a bit.

What are the school programs like for kids with autism there.

[asssssssssp.livejournal.com]

That's such a hard question to answer because the range is huge in programs offered and very much seems to be a school-based provision -that is, a hunt is involved to find the school offering the program you like most. there are 'Special Schools' (how I loathe that term) for children with very high level autism at one end of the range and schools that try to ignore any form of ASD in hope it will 'go away'- queensland education department has started going down the track of believing that autism can be 'grown out of' which is an extraordinary mind-set!!
Our school has a Student Support Unit (used to be called special education/learning support unit) we work with classteachers so that the students access as much as is personally reasonable in the classroom and are further supported in a smaller environment. They have Individual Education Programs and case management is shared between the teacher and a specialist support teacher. This whole program was implemented by my beloved Carla who is the Head of of support Unit and has raised an autistic child (who is now 20 and a beautiful man). programs for kids with asd being run by a professional who has raised a child with asd-thats gotta be good. Each chil'd needs are assessed individually and their learning experiences tailored to fit...I don't know if that answers your question?

[operaheels.livejournal.com]

Your entries like this remind me a lot of my early days, right after I adopted my kids and realized I had only thought I knew why I was collecting a "special needs" stipend from the county for the first year. I think it was for therapy -- for me. I was single then, too.

I don't know. Your entries about Blake are why I added you to my friends list, you know? This, lj, is the only place where I've found other parents -- no wait ... where I've found other queer parents with high-needs kids who are willing to talk about it. And I've found a few.

I'm not saying that that kind of thing is instant friendship, because it's not. But ... You get the picture. What you write here is important to me, and I'm glad to see it. That's all.

[mattblakk.livejournal.com]

Thanks. It's heartening to know that there really are other folks out there who have similar experiences and have survived.

[moonlitglow.livejournal.com]

There are many days when Colin is far too much to handle, so I cannot imagine how you do it. I really admire you for the strength.

[mattblakk.livejournal.com]

I'm sure often what's going on with Blake is much more aout the fact that he's 4 than necessarily autism, but the inability to communicate what's wrong just makes the crisis spiral out of control, and leaves me unable to help most of the time.

Thanks for your support. It helps, muchly.

[grey-evil-twin.livejournal.com]

I took ten years off to have three kids. It can get lonely, and days went past when I saw nobody else. My old friends stopped visiting, and I didn't get out of the house much except for grocery shopping or trips with the kids to parks etc. Once I noticed the lack of social activity it started to bother me, but I still felt very guilty taking a few hours off to go visit with mates, or try and make new ones. Now the kids are bigger, and I'm back at work, I get out a lot more. Things can get insanely busy, but I *need* it. I'm a social person, and thrive around others. I understand how isolating it can get being a parent. Blake's needs mean you've got extra work to do, and I can see how it would wear you down.

Hang in there, matey. I'm always happy to chat.

[mattblakk.livejournal.com]

Yeah, sometimes I think it would be easier if there were two or three of him, and they could talk. Not true, but sometimes when I'm overwhelmed I feel that way. I appreciate your kind words.

[grey-evil-twin.livejournal.com]

No wuckers, matey. Remember to take care of yourself too.

[asssssssssp.livejournal.com]

yeah- exactly and what you said about parenting -yep yep yep I have three of my own and ..one day...I'll wake up without this twitch.....

[eac.livejournal.com]

Being - for the moment - kid-free, I don't have any experience with this, but I am sympathetic about how isolating it is to spend all your time either at school (or work) or taking care of Blake.

As for the plastic pity people ... Logan understands what's going on, and it was Logan's party.

[mattblakk.livejournal.com]

Well, school won't go on forever, and life with him gets easier. Thanks for listening.

[logane.livejournal.com]

god, dude. I know. Not even being able to take the kid to the grocery store, two errands takes hours and hours, not being able to have them out of your site even to use the bathroom.... I wish I were there to help.

[mattblakk.livejournal.com]

I wish I were close enough to help you out, too.

[griffen.livejournal.com]

I don't know if Emily counts as a special-needs child. She obviously has some problems, she's high-strung, and she seems to have some form of my own autistic disorder. But then again, I only have her for four hours at a time, usually, and I get long breaks in between.

How you handle Blake, I can't imagine... but I salute you for it, repeatedly and often.

[mattblakk.livejournal.com]

If someone had asked me how I would have handled Blake if he'd been a hypothhetical situation, I don't know how I'd have responded, either.

My therapist often tries to get me to articulate how I deal with him when he gets like that. I don't think I have any magic formula, I just keep trying the next thing I can think of, and when none of them work, I try to leave him as alone as I can. Of course, that sometimes has bathroom flooding catastrophic consequences, but oh well.

the adrenaline thing

[kosseferal.livejournal.com]

It happens because you have a close tie to him, you are his birth parent. His crying is supposed to reach into your soul--that's what it is designed by nature to do. Think, if we parent animals could harden ourselves totally to the crying of our offspring....that has zero survival value. Liek it or not, even though we aren't roaming round with the baby on our backs, in the outdoors, we still have that innate response to crying.

I know I do--I feel ike somebody's got a tourniquet roudn my neck when I hear a lot of crying...and not just my kid's crying, other kids crying, especially a young baby.

I find myself wanting to nurse that kid---crazy, but true.

I know I don't speak up to your journal much, Matt. I do read, and commiserate, though. I'm always rooting for you, albeit silently. Lot o good that is...

By the way, it seems I am heading for a divorce. Not sure how much LJing I'll be doing, but I'll try.

Re: the adrenaline thing

[mattblakk.livejournal.com]

Ahh, shit, Kosse, I'm sorry to hear about the divorce thing. Are you OK? Let me know if you need to take a holiday away. Once I get settled in my place in a couple of months, you're welcome to visit the Bedlam that is Blake world.

Re: the adrenaline thing

[rexlezard.livejournal.com]

Hey Matt (and Blake),

I don't know you at all, but kossferal and others told me that I should talk to you. Apparently you're "the role model" for FtMs who are thinking about having kids.

I'm adding you to my friends list, if that's ok. I'd love to talk to you about some of the challenges you have faced, if you're up for it.

I've been on T for almost five years, and I didn't really consider having kids when I started it. I was 18; I was still a child myself. Now I'm 23 and I'm all grown up and know better. [/sarcasm] I don't regret being on T, and if I can't get pregnant, that would be Ok, but it's something I want to explore. I'm going to talk to my endocrinologist about getting of T and see what happens.

[archanglrobriel.livejournal.com]

Ree is what's called a "highly intense and sensative" temperamentally, and this natural tendancy was exacerbated when she was a toddler and younger child because of her hearing lost/hearing regained situation. She would have these epic, massive, unbelievable awful meltdowns - especially after going out and doing things that in other kids would be fun. The pediatrician told us that it was because Ree had become accustomed to a certain level of stimulation during the three years when she was deaf, and now that she can hear she's got this whole other channel of info. to process and it floods her nervous system.
Upshot was - trips to the circus, trips to the zoo, birthday parties etc. any of those childhood sentimentality festivals that you dreamed of taking your kid to - they'd all end up with her doing the hour long (sometimes multiple hours) screaming fest.

Since I'm also a very social person and since social events would flood Ree to the point of meltdown, it was a very isolating experience for the first seven years of her life. And I always felt guilty about it too, especially because after this has gone on for a period of years - you begin to be weary of it. You begin to resent it. There were times when I felt like parenthood was the biggest mistake I'd ever made in my life. I remember sitting outside Ree's door, listening to her shriek and thinking "I had a good life and then I had a kid and ruined everything." Of course then I'd feel like the worst parent ever. Super massive guilt. Lather. Rinse. Repeat.

Thankfully I managed to get into a chat group with other parents of high needs and different needs kids and I got to hear other parents saying the same things. It lessened the guilt somewhat and made me feel more able to cope - which was good because it didn't end when everyone else said it would. Ree screamed and had meltdowns until she was eight years old. I know Ree's situation and Blake's are different, but the screaming and the reaction to high stimulation environments sure sound the same.
So I guess I'm just doing my best to share a virtual beer with you and go "I hear that, man." And anytime you need a shoulder or an ear, I'm here and I get it, from personal experience.

[mattblakk.livejournal.com]

Thanks for the virtual beer.

I know the goddess only gives us as much as we can handle, but does she have to have to be so literal about it?

[conbrandt.livejournal.com]

I hear ya...

[doublestuff32.livejournal.com]

***You begin to resent it. There were times when I felt like parenthood was the biggest mistake I'd ever made in my life. I remember sitting outside Ree's door, listening to her shriek and thinking "I had a good life and then I had a kid and ruined everything." Of course then I'd feel like the worst parent ever. Super massive guilt. Lather. Rinse. Repeat.***

Thank you for saying this. I've definitely had these moments too. I've been too sad, to ashamed, to own up to them. But after particularly trying meltdowns, and embarrassing social outings, I sometimes think about what my life would be like without him. I fantasize about not having him with me for a day...a weekend...a week....and all the things I would be able to do. I guess fantasizing is a healthy way to deal with it, since I've got no one to leave him with even for an afternoon. I can't imagine *not* being his parent, though. At the end of my fantasies, he always comes home :)

[jawnbc]

Next time I'm in SF I will make sure to make time to give you a nice tip-to-toes body rub and some adult conversation. That's all I can offer right now.

[mattblakk.livejournal.com]

That, my dear, from someone I trust and care for, sounds like heaven to me right now. Better than bourbon, friends are.

[purplepants.livejournal.com]

You have my deepest empathy. If you aren't on my filter for work [I work with an autistic boy who's eleven years old with a functioning level of 2.5-3 years old], then I will add you--sometimes having something else to look at can help. I know I look forward to your entries about Blake because someone else is living the things I experience with J, the boy whom I wrangle.

And, from what I've read here and what I've seen of J's parents, you are doing an amazing and admirable job in the face of daunting experiences.

I don't know you that well [but I'd like to] but have a hug on me..

::hug::

Amy

[usedtobeme.livejournal.com]

im sorry things dont feel safe, thats the worst feeling ever, particularly for the young and sexy (great new pic by the way).

i would love to hang out in some social settings soon with you. i hate children in general, so the opportunity to hang out with one who doesnt think life is fucking rosy actually sounds very appealing to me. call me--642 6521. im here for another week or two then off to NY, then back.

[doublestuff32.livejournal.com]

I'm glad you find comfort in connecting with people through your LJ. I wish that could be enough for you. No....I wish you could get out on your own occasionally. You've got to recharge your batteries somehow. Any word on the respite care yet?

[logankiefer.livejournal.com]

hey Sweetie
i am really, really, really, sorry you felt unsafe.And that people didn't have a clue. I am even more sorry i couldn't help or be a support for you since i was out of the loop and shocked by it all. I wish i hadn't been so darm surprised and shocked by the whole thing so i could have hugged and squeezed you and Blake some more in the back yard.I hope you know that I wasn't at all upset about you having to leave because i figured you had probably been over here for some time and I know that 1.5 hours is the usual max hang out time/cut off for time over at Wogan's...
to be completely honest..i was sooooo shocked that all i could think about when i saw you....was the fact that i wasn't really going to actually see you later on..that i wasn't just helping Carey move the grill real quick and then grabbing my sweatshirt and heading over in the lumina..that the plans no longer existed.... there was a party... because i had been planning (and getting excited about) that in my mind all day....
getting to do our thing....hang out and watch some shows
have some snacks
i am not sure if i seemed sad when you left...
if i did it was because of this, definitely not the fact that you had to head out

again i am really sorry
not sure i make sense
i am really tired/sleepy
thanks for my gliterglue message and all my treats edible and non...
they are great
:o)
ps i am wearing the twink(ie) socks
xx,
logan

see you tomorrow, i hope??

[mattblakk.livejournal.com]

I'm pretty clear that the people at the party were as friendly as they knew how to be to a complete stranger chasing after a whirlwind. Dave made a good point when I talked to him on the phone earlier, he said maybe what was going on for them wasn't disdain for me and Blake but guilt that their kid was developmentally typical and charming and just not knowing how to interact with such a different creature as Blake.

I will definitely see you later today. I'm thinking tire swing.

[elfgeek.livejournal.com]

This doesn't really compare, but looking after three small kids (1-7) screaming their heads off all at the same time was probably the most stressful I've ever experienced. But really I have no idea about looking after a child with autism. I know what you mean about the 'plastic pity face', what would you say would have been more helpful for you at the party? Being able to go to a seperate room to calm him down maybe? I've only just discovered how much I miss socialising with my old friends as well. I hope you manage to get through your course the best you can & keeping all my fingers crossed, mate! You are obviously getting good marks despite all the difficulties.

[mattblakk.livejournal.com]

I think there are a couple of things people can do. They can talk with me and walk with me while I wander after Blake making sure he's OK. Most conversations with me these days have to take place while moving. I think it's a pretty big paradigm shift for people, though.

I think people assume I should be able to tell Blake what to do and have him respond and aren't sure why I put up with what might look like misbehaviour, and are completely baffled by my lack of response to things that they would find irritating.

I think some people have a natural sense of how to deal with me and Blake.

I think the other issue was the specific requirements of a surprise party. I tried to take Blake into Logan's room, with which he is familiar and to get him to make some art so as to keep him quiet and happy and to keep him from screaming his head off and giving the whole thing away.

Logan's flat mate, in an attempt to keep the party going how she had planned it, came in to remind me we should be in the backyard. So, I tried the backyard again, and Blake officially told me it was time to leave just as Logan was getting his Surprise.

I was happy we got to see him get his surprise party, and was totally OK with not being able to stay. It was just weird. Perhaps it was about the fact that I didn't know any of the people there very well.

[conbrandt.livejournal.com]

I don't always talk, and e-mail is kinda hard right now (for one reason and another) but I'm here for you Bud *hugs*

D-C.

[thefluke.livejournal.com]

You know that I empathize with you, being in the same situation. During the summer, especially, when people are throwing parties and getting together, it's particularly tough. If you can get the kid to keep it together for more than an hour you've done well.

And yes, despite the fact that autism is an ever increasing epidemic, people are still surprisingly ignorant about it. I mean, in many cases people have good intentions, but they just do not understand.

As Blake gets older hopefully the meltdowns become more infrequent. No question it has changed me (as I'm sure it has you), in more ways than other parents can understand.

Maybe not the best words of comfort, but wanted to let you know that there are others with here with you who understand how difficult it is...

[mattblakk.livejournal.com]

I think it is helpful to know that I'm not the only person who has a kid like Blake. Life is definitely easier with him now than it was when he was younger. It keeps getting better, but it's still difficult, as I'm sure you know.

Sometimes I just need a bit of reassurance, I guess. Since I don't have a second parent around to lean on, sometimes total strangers have to help out. Thanks.

[jamesleeland.livejournal.com]

Hello Matt,

Sometimes the Goddess has an interesting sense of just how strong we really are. I learned to stop asking for a break, because it seems like when I do, I am just handed another opportunity to practice peace and calm, and how to find a break in the middle of the hurricane.

I have a whole treasure chest full of hugs and stories, laughter and tears, failures and glory, lustful and loving years. I cannot wait for when Dimitri and I are in SF we get a chance to see you. If you need a massage or anything please let me know.

You are in my thoughts more often then you'd ever know. I would like to change that.

***SQUEEZE****

Jaime

[mattblakk.livejournal.com]

You are a real gem, my dear. I can't wait to see you and your sweetie. Will be so nice to see both of you, and then we'll get to see you again in Sept.

[jamesleeland.livejournal.com]

Thanks *blush*. BTW I love your new picture on LJ. Cutie Bald and clean shaven. Purr & Pant!

I don't know what to ad

[toddftm.livejournal.com]

With our lives takeing differnt turns I don't see you nearly as much as I used to. In fact I think I have only seen Blake about 4 times in his life.
I can't begin to imagine what strength it takes for you some days. I am one of the people who knows very little about autism, and my encounters with Blake have not ever been durning a melt down. You are in my thoughts often and I love you just wanted to say that. I don't know what kind of support I can best offer you. But you have my ear support. If it would be helpful to have someone else who can babysit to give dad a break let me know. But I know that Blake would have to get to know me first.
Stay strong your a hero don't forget that