Frickin' hate waiting for doctors

[Varaj]

We took our youngest in for an official diagnosis yesterday. 4 hours of fun. :grey:

There is little doubt it will be autism I just hate waiting for the actual diagnosis.
The diagnosis is important because it helps get funding for treatment.

[FeatsofClay]

Strength and patience, old man.

You have my thoughts.

[TiQuinn]

Hope everything goes well, and you get whatever is needed for your youngest. :)

[Limper]

We took our youngest in for an official diagnosis yesterday. 4 hours of fun. :grey:

There is little doubt it will be autism I just hate waiting for the actual diagnosis.
The diagnosis is important because it helps get funding for treatment.

If its not to personal... to what degree?

As to the crux of the post... no god damn shit! Slugs on Ice are faster than most doctors.

[Janos]

Autism? Sorry to hear that. My thoughts are with you as well.

[Glass]

Damn dude, that sucks; sorry to hear that.

[Varaj]

Autism? Sorry to hear that. My thoughts are with you as well.

We've known for a goodly while. We have therapists in 3 times a week to work with him. A speech, cognitive and occupational therapist. (1 hour each for 3 hours total).
He is a wonderful kid and we are blessed in the fact he has extremely high intellect and is able to self compensate in a lot of ways. We are very hopeful that the early intervention will let him adjust to near normal levels.

[doc]

Best of luck to all in the family

[PWD]

He is a wonderful kid and we are blessed in the fact he has extremely high intellect and is able to self compensate in a lot of ways. We are very hopeful that the early intervention will let him adjust to near normal levels.

He's extremely fortunate in the parents he has will be very well able to cope and help him. Your shared life experiences will be a huge asset in helping set him up for a good life.

[Northcott]

There's some tenuous indication that autism severity may be linked with food intolerance; dairy and wheat specifically.
http://news.bbc.co.uk/2/hi/health/526044.stm

I've been wondering of late if this is another by-product of our "nanny state" mentality regarding agriculture. It's been proven that unpasteurized dairy can be quite safe, yet legislators are still in kneejerk denial over it -- and 'raw' milk has roughly 30 more digestive enzymes in it that allow for more efficient processing, lowering or even elminating incidents of lactose intolerance. Additionally, pasteurization denatures the proteins which may affect how the human body deals with them.

I don't know if this will help at all, but I hope it does. Good luck, guys, and best wishes to your family.

Edit: more info -- http://autism.about.com/od/causesofautism/a/dietcause.htm -- more thorough.

[Varaj]

There's some tenuous indication that autism severity may be linked with food intolerance; dairy and wheat specifically.
http://news.bbc.co.uk/2/hi/health/526044.stm

I've been wondering of late if this is another by-product of our "nanny state" mentality regarding agriculture. It's been proven that unpasteurized dairy can be quite safe, yet legislators are still in kneejerk denial over it -- and 'raw' milk has roughly 30 more digestive enzymes in it that allow for more efficient processing, lowering or even elminating incidents of lactose intolerance. Additionally, pasteurization denatures the proteins which may affect how the human body deals with them.

I don't know if this will help at all, but I hope it does. Good luck, guys, and best wishes to your family.

Edit: more info -- http://autism.about.com/od/causesofautism/a/dietcause.htm -- more thorough.

We looked long and heavy into that. Right now we don't seem to have any of the sub-symptoms that indicate that it would be a benefit.

[Northcott]

Sorry to hear it. Best wishes to you and yours.

[Dawnstar]

You and bella I know are doing all that you need to. And waiting for official word is always hard. Hang in there.

[Blue Eyed Frau]

You and bella I know are doing all that you need to. And waiting for official word is always hard. Hang in there.


What she said, Hang in there :)

[Priss]

We took our youngest in for an official diagnosis yesterday. 4 hours of fun. :grey:

There is little doubt it will be autism I just hate waiting for the actual diagnosis.
The diagnosis is important because it helps get funding for treatment.

Love, luck and lollipops.

When did they say they would be able to give you the diagnosis?

The early intervention should help a lot. He's still a babe so helping him structure now can go a long long way. More kids need parents who pay attention to these things and don't throw out dumb comments like "Don't buy my kid any smart toys, she doesn't like them." and then act like it's the kid's fault she's autistic. (sorry personal gripe about someone I know)

[Varaj]

Love, luck and lollipops.

When did they say they would be able to give you the diagnosis?

The 10th, so it isn't a long wait but still ggrrr, whine, whine.


The early intervention should help a lot. He's still a babe so helping him structure now can go a long long way. More kids need parents who pay attention to these things and don't throw out dumb comments like "Don't buy my kid any smart toys, she doesn't like them." and then act like it's the kid's fault she's autistic. (sorry personal gripe about someone I know)

Ain't that the truth.

[Sobek]

I really don't know what to say. I feel for you guys.

I thought you'd already had the official diagnosis. Do you have another autistic child?

[Varaj]

I really don't know what to say. I feel for you guys.

I thought you'd already had the official diagnosis. Do you have another autistic child?

Nope the waiting list to get in for diagnosis is over 6 months. There is little doubt and we have been getting lots of therapy, just not an official diagnosis. Right now he is listed as an at need child and everybody says, "We can't give you a diagnosis, but we know what it is."

[Varaj]

Done waiting. The only surprise was how autistic. I thought it would be mild or slightly moderate, but all the tests say severe (just inside the severe rating on all the tests they used).

They recommend a minimum of 25 hours of structured therapy a week with 40 being better. They recommend for most families the parents and friends learn to provide much of that themselves since it is way too costly for all but the very, very wealthy.

[doc]

Thats rough but with parents like you two he'll get better

[FeatsofClay]

Done waiting. The only surprise was how autistic. I thought it would be mild or slightly moderate, but all the tests say severe (just inside the severe rating on all the tests they used).

They recommend a minimum of 25 hours of structured therapy a week with 40 being better. They recommend for most families the parents and friends learn to provide much of that themselves since it is way too costly for all but the very, very wealthy.


When you or Bella want to come watch the restaurant and gallery for a week I can come help there. :)

I am sorry for the severity fo the diagnosis but I also realize the kids best chance and biggest positive is the parents. You two will deal with this much better than most. You have my ear of needed and anything else you could ask for.

[Northcott]

Also remember that while some people in the field like to talk as if they know what's going on, they really don't. Autism is still a mystery in many regards. My wife's had plenty of horror stories about special education "experts" fucking up on a grand scale with autistic kids by making broad assumptions and operating from a point of pre-determined surity.

Nothing replaces the instincts of an attentive and loving parent. With that element secured and the addition of the body of knowledge that exists on the subject, I've no doubt that your child will do just fine.

[seizure salad]

Thats rough but with parents like you two he'll get better

sorry to hear about the diagnosis, happy to hear you guys sound very involved and concearned. unlike squashy's father and step mom. i believe his baby bro is on the low end of the spectrum and mommy is uneducated, drinks too much and in denial.

[Atropine Mama]

Thank you all so much for your kind words and support. It's really amazing how much I love this little community.

So, our little guy is autistic. The diagnosis was severe autism (the doctors continually said it was a "classic" case), with a recommendation of a minimum of 25 hours a week of intensive therapy. Deathe and I are basically going to train to be his therapists. He may end up being high functioning, with his intellect and the early intervention being his saving grace.

We have purchased several books that the doctors at Children's Mercy Hospital recommended and are immersing ourselves in this. They gave us tons of local resources and support groups, and will be working with our county's Infant Toddler Services (who currently provide his therapy) to determine his ongoing treatment. He'll transition into a special preschool through the school district when he's 4 and will probably go to a normal kindergarten at 6, with an assistant teacher. We are exceptionally lucky to have moved to this county when we did, as the services here are at the forefront of the autism fight. They're unbelievably good. We are so very fortunate.

We're getting his older sister the book "Rules", a fiction depiction of a girl with a younger autistic brother, which has gotten awesome reviews and I believe a Newberry award. Trying really hard to not lose our other two kiddos in the shuffle here, it's going to be a big change. His older brother doesn't understand anything yet other than his brother is different (according to us but not to him) and will need more teaching, but he won't die -- big brother's main concern for him -- and he's still his best buddy. The two are inseparable.

I was prepared for the diagnosis, I thought. But the word "autism" still hit my chest like a brick, my vision blurred and Deathe held my hand while I looked away from the doctors and grabbed kleenex. They understood. I suppose I'd just held onto the tiny hope that we'd been mistaken.

From here on out we work, harder than ever before. I've never felt more like a warrior.

[TiQuinn]

Done waiting. The only surprise was how autistic. I thought it would be mild or slightly moderate, but all the tests say severe (just inside the severe rating on all the tests they used).

They recommend a minimum of 25 hours of structured therapy a week with 40 being better. They recommend for most families the parents and friends learn to provide much of that themselves since it is way too costly for all but the very, very wealthy.

Yikes. :(

[Northcott]

Sounds like your boy's got an awesome environment to come up in, Bella. I really don't believe there's any substitute for the advantages that love gives a person in developing who they are as they grow; not the shallow materialism that some confuse for love, or the infatuations, or the excessive permissiveness that some parents mistake for it, but the real thing. You folks seem to have that.

He's surrounded by love: he's got siblings who love him, an older brother who he'll pattern himself after (and I'm sure you've already read about - or are reading about - how important pattern and structure can be), and parents who adapt themselves to the situation rather than act as if the child has wronged them somehow. There's even experience in dealing with alternate mindsets, and the insights which came from that may end up proving to be invaluable.

I know this is hard for you guys, but this is one of the few cases where I have no worries for such a child. He couldn't be in better hands. :)

[Morbidity]

Hey you guys just remember to spend time with each other as well as helping your youngest and keeping your other kids feeling loved!

[Sobek]

Just catching up on stuff....

I'm sorry to hear that the news is that extreme. There really isn't much I can do from here. I'll say a prayer for your strength. I know you don't believe but will take it as offered.

[Varaj]

Just catching up on stuff....

I'm sorry to hear that the news is that extreme. There really isn't much I can do from here. I'll say a prayer for your strength. I know you don't believe but will take it as offered.

Thanks
Prayers, good thoughts, nice vibes, etc. always welcome.

[Lady Fury]

Thats rough but with parents like you two he'll get better

I don't think children get "better" from autism. Sure you can help life be more comfortable for them but like Northcott said there is really very little known about the condition. My personal belief is that the parents hold the key in helping unlock their child's mind. Getting outside help is a must because both the parent and the child need to learn how to interact in away which won't frustrate the two of them. Now with that said, I know that there is on going research that is looking favorable for a possible cure for certain autistic characteristics. I have a friend who's research involves gene therapy and she just got a 5yr grant to start human case trials. There is still a lot of controversy about autism being inheritable but from what I've heard from my friend there seems to be a connection that critics won't be able to deny once her trials prove her hypothesis.

Bella and Varaj, I can't begin to imagine what you are going through. My thoughts and prayers are with the both of you and your son.

[Space Cadet B^3]

Late to respond, but I can't think of two better parents to handle a situation like this. Y'all are chock full of teh awesome, and the things you've surmounted together are astounding, so here's beaming you much love and good karma on the continuation of this journey.

[Atropine Mama]

Sobek, I really appreciate prayers. It doesn't matter to me whether I believe what others do or not. It's the caring behind them that makes it potent.

Thank you, all of you, for your kindness and encouragement. :grouphug:

I don't think children get "better" from autism. Sure you can help life be more comfortable for them but like Northcott said there is really very little known about the condition. My personal belief is that the parents hold the key in helping unlock their child's mind. Getting outside help is a must because both the parent and the child need to learn how to interact in away which won't frustrate the two of them. Now with that said, I know that there is on going research that is looking favorable for a possible cure for certain autistic characteristics. I have a friend who's research involves gene therapy and she just got a 5yr grant to start human case trials. There is still a lot of controversy about autism being inheritable but from what I've heard from my friend there seems to be a connection that critics won't be able to deny once her trials prove her hypothesis.

A recent study has found that autism symptoms can improve with age (http://www.sciencedaily.com/releases/2007/09/070926111524.htm), so there's hope for increased quality of life with therapy, etc. Our son will most likely be high functioning, and I'll be goddamned if I'm not gonna do everything I can to get him the tools he needs to end up that way. Go, little man, GO! :D