Things We Do For Our Family

[Pruitt]

Since we are all wonderful people - this could be a good thread...

In a couple of hours, I will be heading to the incredibly crowded lakefront in order to spend 4-5 hours in the heat and sun watching yet another Canadian Air Show.

Listen, nothing against air shows, it's just that from one year to the next, there are very few changes in the lists of planes at the Toronto show. But to my son, the air show is something that he just can't miss... for 12 straight years.

If you're in Toronto today look for me - I'll be the bald, bored guy sweating his ass off while lining up to use a port-a-potty.

But my 16 year old son - the hairy, slightly less sweaty version of myself - will be the happiest teenager in the city.

[Shirley]

There's a very good chance that I'll be buying a condo at the beach (Emerald Isle) a little later today. My wife has been looking at beach properties for years. I gave up trying to talk her out of it.

[howard]

Heh. My sister just moved to Havelock. She got a job at the Marine Air Station there. I'm already planning to visit her for beach and golf. To stick to the thread, I gave her money for a car and her move, from San Diego. As she says, I'm doing a good job of buying my way into Heaven.

[bfj]

Deleted, to keep the spirit appropriate.

[A_B]

That's the spirit of the thread bfj!

[Shrew]

Deleted, to keep the spirit appropriate.

Hang in there BFJ. I wish I could say something sage or profound, or even pull the bull shit AA platitude card with something like "g-d doesn't give us more than we can handle". But that would be insincere.

My sister Felicia (Profoundly deaf, autistic, and legally blind) pulls the same stuff every time she feels frustrated and can't communicate what she wants. She's attacked my Mom, my sister's, in laws and me. She can't really hurt me because I am so much bigger than her but those blows to my head she gave me this past Christmas could really hurt my 84 year old mother. She's torn my Mom's facial prosthesis off a few times. I always feel torn because I want to protect my mother but have to use minimal force to restrain my sister.

My other sister, Kathleen, had Cornelia de Lange Syndrome. She just passed away this May weeks before her 50th birthday. We went ahead with the birthday party in lieu of a funeral, more of a celebration of life. We shared a lot of funny stories. Kate was sort of a savant with dates. Its amazing what doors in the brain get unlocked. You could mention the name of some random relative in conversation and she would pipe in with their birth and death dates. What also crept into our stories during her celebration was how hard life must of been for her. It took years for her group home staff to get her meds right. She vacillated between zombie and rage for a long time as she couldn't really express what was going on inside her mind.

This court case stemmed from overuse of restraint of Kate during outbursts. Search in the document for "restrain". The end result was positive as it helped protect the right of self advocacy for the mentally retarded. Sucked at the time as we were portrayed in all the papers as monsters. Easy for people to judge when they are looking at the situation in a vacuum. Its near impossible for anyone to understand who hasn't been there.

Not trying to say your son is anywhere near as handicapped as my sisters, not trying to one up you in the "crappy family situation" department. Just wanted you to know that I can identify with you and hope you are doing all right.

[Giff]

I make sure when I'm neglecting them for things like fantasy football drafts and the first Saturday of the college football season that I have a lot of fucking fun doing it. Otherwise, what's the point?

[The Sybian]

Deleted, to keep the spirit appropriate.

She's torn my Mom's facial prosthesis off a few times.

Jesus, your family has had a rough go of things. Never heard of CdLS, but that doesn't sound like a fun disorder. Sorry to hear that your sister passed.

[DC47]

Deleted, to keep the spirit appropriate.

I'm inferring some challenging parental times. My heart goes out to you. Feel free to PM if you want to talk.

Though my autistic daughter certainly provides daily challenges, she's had a pretty good summer. She's done well at various camps, and loved being a 'helper' at the summer horse camp at the stable where she rides. Horses and kids half her age are right up her alley.

In the past few weeks she's even had some breakthroughs. She now is pretty good at lefts and rights, for example.

So it's been a nice summer, but school starts on Tuesday. Since she's nominally in a regular classroom (a year behind her age group and with 'pull outs' throughout the day), school is rough for her. She's starting middle school now, so we're even more concerned. From the experience of our older daughter, it seems that middle school is a much less disciplined environment. Our younger daughter is an easy target for all kinds of abuse.

I'll walk her to school on Tuesday, hand in hand. It's going to be hard to let her go when we hug goodbye.

[bfj]

My problem was reading The Swamp when I'm in such a bad place right now. Everything pisses me off.

[howard]

The struggles and challenges you guys have with your children who have special needs break my heart. And inspires me.

[bfj]

The struggles and challenges you guys have with your children who have special needs break my heart. And inspires me.

You shouldn't be inspired by me at all. There's nothing inspirational at all in what I go through daily.

[DC47]

I'm inspired too. My self-pity is hard to sustain when I contemplate what it would be like to be functioning at an intellectual level where "left" is a challenging concept. And to be a teenager who has no clue at all when kids are setting me up for ridicule. My bumbling, spacey, impaired, sometimes violent daughter inspires me every day by facing a tough life with some spirit. Even on days when she also leaves me deeply sad, or immensely frustrated.

Other parents and their disabled kids -- totally inspiring. Several that I hang with frequently are my heroes.

Inspiration is all around.

For example, addiction. I come from a family with substance abuse problems. Somehow, I don't have them. I must have won the family genetic lottery on this one. I occasionally used just about every form of recreational drug available in the 70s and 80s. In part, I was testing myself regarding addiction. While outrageously enjoyable, nothing I used left me with a need to continue on when the thrill was gone or the time wasn't right (which was virtually all the time given how much I had to work). In the 00s I needed serious painkillers for quite a while after two medical incidents. Great stuff! But I kicked them without much trouble.

So I'm not much of an addict. But when I hear about other people's struggles with addiction, I get it. From personal experience, I know at least a bit of the multiple appeals of various ways of being high. And I lived with the every-day tragedy of parents who couldn't stop. I've got a strong feeling that those who are in deep and struggle to get out are doing something heroic. In the face of heroism, my own mundane troubles seem less insurmountable.

[A_B]

My problem was reading The Swamp when I'm in such a bad place right now. Everything pisses me off.

And just for the record, I could have been more sympathetic - i guess i was rading the thread as a little tongue in cheek, because I think the first couple of posts really are kinda family humblebrags (and good good for you guys).

I feel for you. I won't pretend to be able to comprehend what you and yours go through. I am just thankful that there are people like you who try hard to do what's right, when there are those who just quit.

[Shirley]

I think the first couple of posts really are kinda family humblebrags (and good good for you guys).

Oh, no doubt. My post was especially douchy. Completely worthy of ridicule.

BFJ, I don't know what you posted and I don't know what you go through every day with your son, but I probably have some understanding. With my son, my wife really takes on the burden of constantly worrying about him and endlessly trying to come up with ways to make his life more successful. She really does an amazing job and it allows me to stress about it less.

Fortunately, much of what she's devised for our son has worked well and he's been able to be fairly successful despite his autism. But it's a constant fight. I feel like we work every day to clear obstacles from his path and to try to make to road smooth. But sometimes potholes pop up. And sometimes he stops, turns, and walks into the ditch. But we keep going and so often when I read about others' struggles I realize just how fortunate we are. Autism really is a spectrum disorder and kids (and adults) have a huge range of strengths, weaknesses, and struggles. We could have it so much worse, and we are aware of that.

BFJ, what you do your son is inspiring. It's fucking hard, but you and your wife fight to help him. And that matters. I have no doubt that you've made great strides in making his path smoother as well. Many, many parents have done much, much less for their kids. It matters. When he's older, he'll understand and thank you for it.

(I hope you weren't ranting about a drunk uncle or something)

[The Sybian]

The struggles and challenges you guys have with your children who have special needs break my heart. And inspires me.

You shouldn't be inspired by me at all. There's nothing inspirational at all in what I go through daily.

Well, I was inspired by your fight to get your son into a different school situation a couple of years ago. You really went to bat for him, and I was touched by the story and how much you went through to improve his situation. I missed your post, so I'm not sure what you are going through, but you always have support here if there is anything I can do, even if it is just as a sounding board. Wishing you and your family the best.

[sancarlos]

Damn, I'm rooting for you guys. And, DC, middle school is a horrible lord of the flies crapshoot even under the best of circumstances. Good luck , dude.

[Steve of phpBB]

This thread just makes me feel like a spoiled piece of shit when I whine about my kid. My thoughts are with all of you.

[Pruitt]

This thread just makes me feel like a spoiled piece of shit when I whine about my kid. My thoughts are with all of you.

100%.

[rass]

buzz=harshed

[duff]

BFJ, DC, rerun and all the others out there that have children with special needs are inspiration for us all. I could never imagine the daily struggles that you all go through. Keep loving your kids and keep fighting the good fight for them. From all that you guys have shared about your kids during the years, it is obvious how much you care for and love them. Just wanted to give you guys virtual high fives.

[rass]

(I hope you weren't ranting about a drunk uncle or something)

C'mon guys. That was really fucking funny.