moms unite! Please Help!! !

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Hi everybody! I'm new at this, and I need some help. Could you take some time to visit my site and give me your input? It's terribly long, and I'm sorry for that, but I didn't know how else to find help. I'm thankful to have found this site.
Bubsmom
http://www.wrongplanet.net/modules.php? ... y&jid=2826

I will post here what I wrote in the blog comment section,incase you dont read those.

The large block of words is impossible for my mind to process.I would be happy to respond if you could break it up a little so I dont keep losing my place and ending up in the middle of a new line...it gives me headaches and I think effects many others the same way.

I got threw the post by highlighting a line at a time. A few things stuck out with me.

1.) The reaction to the meds, my son was on ritalin (Same Family) and had no where near that kind of reaction, but did devleop tics. It sounds like a very extreme reaction your little boy had, it is very disapointing that they had no other advice for you, and the whole way he handled you and your family sounds like he really was not listening or knew what he was talking about. Was the blood Pressure med Clonodine? That is what they put my son on until I stopped it all. The concerning thing with Conodine is that you can't just give a large dose or miss a dose, it is a medication that needs to "build up" in the system to effectivness, and just stopping it can be dangerous. Too large a dose or missing a dose can cause a Stroke! Maybe it was a different med, but if it was Clonodine, from what I know of the drug it should not have been used the way it was!

2.) It sounds like he may be hyperlexic? Have you looked into that at all?

3.) I have a feeling his IQ is a lot highter then 125, that is not indiciative of AS in itself, however when you compare the poor social skills, it really does give a clear picture that something is going on with him that I think can't be explained by ADHD...

4.) I would definately look to have him assessed for AS and read up as much as you can about it. It is great you have him in a small school, it sounds like a great place, one thing I would worry about in additon to his low EQ and social skills is getting bored out of his tree in a regular class. Still though, children with As commonly grow up to have problems with Anxiety and depression among other things, some of it can't be avoided, but it is always best as a parent to know what you are dealing with and how best to help.

5.) Never blindly trust a "professional" again when it comes to medicating, they don't always know what is best or even know what really is going on. Some don't Diagnose kids with AS just out of the principle of "too many" kids are getting diagnosed! As a parent, you can trust "some" of your instincts.

6.) I don't think you sound like terrible parents at all, rather the opposite!

I tried to break my ridiculously long post up into smaller sections, but it won't keep my edit! Sorry it's so hard to read!

Thanks...that really helped and I had no problem getting through it this time...I dont mind long posts...I love to read.

Your son sounds classic AS to me,I have no idea why the "expert" would not DX him.Have you looked on-line for a local autism support community,they are the ones who gave me a list of DRs who were familiar with adult AS(more difficult to DX).As far as weither you should get a DX,I cant think of any reason except if you need special services from his school at some point(should you ever leave the current school system.There are social skills classes but I cant figure out why the same things cant be taught at home and with sisters he should have someone to practice with.

I am 43 and wasnt DXed until this past year,let me clarify,I was DXed with everything but AS because it did not "exist" the last time I was in therepy(1992).So,people can and have "survived" without labels and interventions....that being said,it was far from easy and the stress of doing so(with no support),was near suicide and far from reaching what I feel could have been my "potential".The support I am referring to is that which you are already giving your son,love and exceptance and pride in who is as an individual.I swear that is worth more then many interventions.

Problems with social skills..other then getting in peoples personal space,I was not a problem child.My "meltdowns" were going into my room to cry and rock.I dont recall ever yelling....I hated all loud sounds,was even a silent crier.I also had a lot of issues with clothes but it was the textures that I couldnt stand(scratchy) and being made to wear dresses because the "air" hurt my legs
and it was harder to climb trees.His need for "tight" things is probably a need to feel his own body...some of us dont really feel "in" our bodies and have poor sense of where we are in space....so the tightness makes you feel your own skin and boundaries.

There are more social skills problems in general schools with bullying and as we get older and the "rules" become more complicated and clicks form and kids have learned more non-verbal behavior.If he has an interest,he can learn these things...just tell him it is like he is Jane Godall among the "apes" learning their behavior and non verbal communication and how to respond in a way that they can understand(since they are so poor at verbal communication).

Some of the things that may be difficult for him,he will learn through intellectual means....again,if he has an interest in it.I dont personally think everyone in the world needs to be as "hyper-social" as some "experts" think.Some is good,if it is validating and offers a support system.But you have to admit,a lot of socializing is "not very productive"and his time and energies maybe better spent in research or creating.I think he has one of the greatest gifts of an aspie(ok,maybe some NTs, )...the pure joy of learning.I have spent my life confussed by the seeming indifference of so many people about learning....just for the joy of understanding something....which is a larger handicap.....lack of ability to "smooze" or lack of intellectal curiosity?I would say,looking a the state of the world,we could do with a heck of a lot more learning and a little less "chatting about American Idol".

(Man,some of those aspies,sure can talk....and go off on a tangent... )My point is....it isnt a problem until it becomes a problem and half of that isnt the AS traits but a hostile environment and lack of understanding about how Asers are wired to see and experiece the world differently......read,read,read.If you have questions bring them here,inspite of the claim that people with AS have no empathy... ...I have found them very caring and supportive(with a few meltdowns and misunderstandings and black and white thinking thrown in).

I am very optimistic about your son.You sound very excepting and that is a huge aid for him.He may be "quircky" but he does sound high functioning and sounds like you have a great relationship with him.No more meds....AS in brainwiring....the most they can offer is IF the individual has co-morbids of depression or anxiety and even those are not often needed for manykids.
There are two other areas of interest with many people who have AS...."central auditory processing disorder"..."executive function disorder"...those are things you might want to research and see if they apply to him as they could cause problems in communication in "groups" and compleating tasks.

About the writing....I was reported to have "exceptable" handwritting in school,but also had callouses on my middle finger from holding the pencil to tightly.I read some where that aspies often learn to improve their writing...not by "nriting" the letters but by "drawing them" as you would a picture(another factoid to store in my tank of mostly useless information tht fascinates only me)

so hard to read............
at any rate, yes I think you should take him to a different doc regardless of his fears of docs ( which are well warranted btw). A proper dx will help him get services he might need . i would research docs that are in your state . check out any information you can find on a local autism society~ parents there could possibly refer you to a reputable doc .
i've heard of docs putting kids on ADD meds only to find that ADD wasn't their major problem . Crazy , I know...but this happened to a friend of mine. The doc put her son on ADD meds, and as soon as the ADD behaviors diminished the Autistic features increased !

I'd definantly get him assessed because he'll get services after he's diagnosed.

He definantly sounds AS and it sounds like his IQ is much more than 125.

Can you call a local Autism association and ask them for 'AS' friendly paediatricians. They usually keep a list like that.

I sacked the first paediatrician. I had done heaps of research before hand and thought her management plan was crap.

So we're off to a different paediatrician next week. My son is 7, so I figure it's worth finding a good paediatrician to help us over the next few years.

Doctor's are not necessarily 'the expert'. Go in prepared so you know if they know what they're talking about.

Good luck.

Smelena