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lovemy4
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| Posted: July 31 2009 at 7:08am | IP Logged
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Hi
Well, we've just found out officially that our 6 yr old boy has Aspergers, our 4 year old boy has PDDNOS.
I am overwhelmed by everything out there. The Child Psy who did the testing recommends cognitive behavioral therapy and communication skills training.
We've already implemented a casein free gluten free diet with very good results (the stimming is cut way back).,
Anyways, I just want to do all we can (and afford to do).
From a HSing standpoint, what have people used to help? Any programs out there to help their specific issues too?
Thanks in advance
Renee
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insegnante
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| Posted: July 31 2009 at 1:41pm | IP Logged
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Renee, I am fairly new to this subject as well and probably about as overwhelmed with information and options as you are, but have you heard of RDI? http://www.rdiconnect.com We have just started working with a consultant for this for our almost-5-year-old son.
I'm also on an emailing list about homeschooling children with autism (I was welcome to join and post even before I was sure my kid was on the spectrum -- he hasn't yet been formally diagnosed with anything -- and before we've begun officially homeschooling.) I can PM you the info if you like. Even if you don't find time to participate in many of the conversations, if you ask questions about the things you are trying to learn about or considering, you will probably get some potentially helpful responses.
__________________
Theresa
mommy to three boys, 3/02, 8/04, and 9/10, and a girl, 8/08
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mom3aut1not
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| Posted: July 31 2009 at 2:22pm | IP Logged
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Renee,
I have three ASD children. Two are high school graduates, and one is in "4th grade". I have another non-ASD child with other issues who is also a high school graduate.
I can't really make many recommendations as ASD kids vary so much. In general, being explicit, concrete, and specific in your teaching and expectations is most helpful. ASD kids don't "read between the lines" very well -- if at all -- so you need to make your message crystal clear and explicit. With younger kids, getting communication going is the basis of your hsingl I have found materials from Linguisystems and Super Duper helpful. Ask your SLP for help in selecting materials.
For example, my youngest ASD child is currently using for speech therapy purposes:
Mastering Inferences
Austism and PDD Answering Questions level 2
Fun Decks (Analogies, Conditional Directions, Compare and Contrast, Why, How, Categories)
Guess Who? (Yes, the game)
Mystery Garden (Yes, another game)
and some stuff made for the PALS summer program
I do three SLT activities a day in addition to standard L Arts activities -- light as yet-- WWE, FLL, and AAS. I have adapted the narration activities in WWE to my son by reading only a little bit before asking a question. At the end I do ask him for one thing he remembers. He has done better than I expected. I am not doing the narration activities in FLL. AAS has been awesome -- he is currently on step 19 of 24 of level 1.
I have started using workboxes. I consider it an investment in the future mostly as my son is not capable of independent work most of the time. He does like seeing his day's work all laid out and now insists on having the boxes pretty much the same day to day. Our first box is his religion for the day, and the last is a rosary and the rosary book by the Nipperts.
Work on social skills (see books by Jed Baker for examples) is vital. Your SLP can help you choose explicit goals. I have found it helpful to write in social skills and SLT activities in my planner each day.
Many of the materials now available weren't even made when my older kids were young. I had to muddle along as best I could. So much more is available now.
Don't be afraid to check out things like Cub Scouts and Blue Knights. My son is an enthusiastic cub scout and is on his way to earning his Webelo badge (his penultimate workbox). Depending on the intensity of your sons' needs, you may need to leave one at home with Dad while the other goes to such activities. Ot you may decide that it's too much altogether. Just don't decide in advance that your son can't be one -- I have found Cub Scouts in particular to be very accommodating.
HTH!
In Christ,
__________________
Deborah
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lovemy4
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| Posted: July 31 2009 at 2:38pm | IP Logged
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Deborah,
Okay this is how confused I am, what does "SLP" and all your other acronyms stand for? I have no clue 
And all the materials you suggest are they things I can purchase? My boys are in no programs at the moment. My oldest was in speech and OT last year through the public schools once a week because he had some language delay BUT they said he will no longer qualify b.c. he no longer has speech impairment. My younger son has no language delays so they said he would not qualify for anything even though he is clearly lacking socially and fine motor, gross motor, imaginative etc. etc.
This is one of the reasons we decided to formally evaluate both of them ourselves, the school system refused to. Now I have to figure out since they have this diagnosis will they qualify for services through the schools or do we have to find therapist etc. ourselves and then what route to go.
I am absolutely confused as to where to turn to first. The evaluator suggested finding a place that specializes in cognitive behaviour for autism. The nearest is half hour away which we could do. It's just $$$$$ and don't take insurance. That's why I am wondering what others have done.
Sorry to ramble on and on. Up to now I've done *nothing* because I don't know where to start but I can't do that anymore so trying to find the best foot foward here....
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mom3aut1not
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| Posted: July 31 2009 at 4:38pm | IP Logged
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Renee,
Sorry!
SLP Speech and Language Pathologist
SLT Speech and Language Therapy
WWE Writing With Ease
FLL First Language Lessons
AAS All About Spelling
Yes, you can buy all those things I mentioned. I forgot The Processing Program. I get it and other books on autism like
The Social Skills Picture Book by Jed Baker
Taking Care of Myself
No More Meltdowns
The Incredible 5-Point Scale
My Friend with Autism
The Way to A
Visual Strategies for Improving Communication
Do-Watch-Listen-Say
from Amazon.com or the Amazon.com Marketplace.
The things I mentioned earlier like the Fun Decks, Mastering Inferences, etc. are all available from Super Duper, Inc. or Linguisystems. Fortunately, it is easier to get materials now that don't cost an arm and a leg. (When my big kids were little, everything seemed to be a $300 program meant for a classroom.) You can also look for early learning materials and games for some things like sequences.
Although your kids don't have big language delays, they probably need help with pragmatic skills -- where social and language skills meets. Focus on that as well as fine and gross motor skills. (Check out Handwriting Without Tears for handwriting.)
Do you happen to live anywhere within a hour or so or of Baltimore? Kennedy Krieger CARD is awesome.
If not, ask your state hsing organization for contacts or your local support group. Ask your local chapter of the Autism Society of America. Find someone who can give you concrete help. Get the straight skinny from other parents if you can.
As for getting help from the ps -- When your kid reaches school age, you may get help if they are cooperative, but you have no right to anything. With your younger son, if you can show educational necessity, he has a right to help. This can be challenging. My middle daughter was being refused help until we got some help from a big name SLP. (She was being tested as part of a study. After four or five hours of speech and language testing, the SLP was extremely emphatic about getting her help. I told her that the school wouldn't listen to me. She told me that she would write a report, and they would listen to her. They did.)
Because your kids don't have big language delays, you'll find it easier to teach than I do with my son. You should be able to use many mainstream materials; you'll just have to be careful in selecting them. Again, concrete, specific, and explicit are important to keep in mind.
Be of good cheer!
HTH!
In Christ,
__________________
Deborah
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Taffy
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| Posted: July 31 2009 at 5:01pm | IP Logged
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Hello lovemy4, welcome to the ASD club! 
SLP means Speech and Language Pathologist. FWIW, I haven't a clue what WWE, FLL and AAS mean either and I've been dealing with PDD-NOS in my oldest for the past 12 years! Would love to know what they mean, Deborah, when you have a minute.
Anyhow, my first words of advise for you is to evaluate where your boys are at now and try and identify their areas of weakness. Believe it or not, you are in the best position to do this, as their mother and the "professional" who knows your boys best. Seek your husband's input here too, of course, as it will be very valuable and help with your objectivity.
We've explored RDI for our son. The closest counselor for us is over 200 miles away. There is a LOT of parent education involved which we had to pay for. For us, it was stuff that we already were well aware of. We never got to an assessment for our son as we were required to complete the parent education before an assessment could be done and we simply couldn't afford it.
We've had very mixed results with professional services for our son. When he was first diagnosed, we tried to get him into early intervention as every resource we found told us how important it was. Sadly, the waiting lists were long but we lucked out and got him into a fairly good program. We weren't able to get speech therapy, though, since the speech therapist told us that she couldn't help since she couldn't get our son to interact with her.  
We had to move shortly after he started this early entrance program and my husband's new employer, the local school board, assured him that our son would be able to get the services he needed within the school division. Sadly, that turned out to be a lie and we were deeply disappointed. After 4 years of trying to work within the system, we gave up and decided to home school him.
Sorry to go on but I share this abbreviated story to let you know that professional services are only as good as the providers giving them. We have dealt with amazing speech therapists and teaching assistants and teachers and we have dealt with others who were there only for a pay cheque and have found that therapy done poorly is WORSE than no therapy done at all.
As Deborah already mentioned, the autism spectrum is HUGE and it is very difficult to make accurate general recommendations for you.
I think I would advise you to check out Temple Grandin's writings as well as Donna Williams. Both are autistic and describe what the condition is like for them quite well. Charlotte Mason's methods are excellent for children on the ASD spectrum. There are many resources online with info on that, Tammy Glaser's blog, is an excellent starting place for this.
Once you have assessed and decided what areas your sons need help with, you'll be in a better position to decide what services you need. It is so easy to become overwhelmed by it all, and hope to have helped.
__________________
Susan
Mom to 5 on earth and 1 in heaven
Susan's Soliloquy
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lovemy4
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| Posted: July 31 2009 at 6:45pm | IP Logged
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Ladies thank you so much! I am going to check out / purchase as many of these as possible and start a wish list for my family :-) These are all things I NEVER heard of though I've been doing research off and on for the past 2 years.....
You've made my day 
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insegnante
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| Posted: Aug 01 2009 at 12:04am | IP Logged
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Taffy wrote:
We've explored RDI for our son. The closest counselor for us is over 200 miles away. There is a LOT of parent education involved which we had to pay for. For us, it was stuff that we already were well aware of. We never got to an assessment for our son as we were required to complete the parent education before an assessment could be done and we simply couldn't afford it.
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I think my consultant has to do the "parent education" stuff but she seems sensitive to the fact that I already understand a lot about autism and that I'm looking forward to the next steps. We haven't gone to any workshops or seminars and I'm finding the consultant's services reasonably priced. I am working with her long distance.
The main idea with RDI seems to be that the brain can and does change based on what it experiences, and although a child may not cease to be autistic, his or her brain may still be able to change in ways that help address the "core deficits" of autism.
If you are interested in learning about the whole RDI concept, even if you never choose to or are unable to hire a consultant, you may be able to glean some helpful ideas from reading about RDI. Tammy Glaser's blog which Taffy linked is a major reason for my interest in trying it. There are also one or more books out there.
__________________
Theresa
mommy to three boys, 3/02, 8/04, and 9/10, and a girl, 8/08
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lovemy4
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| Posted: Aug 01 2009 at 6:18am | IP Logged
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I am going to follow that blog and gleam as much info as possible. From the little I have read in the past 24 hours RDI seems like something I want to explore.
It's tough (as you all know I'm sure) when $$$ is a concern. We are doing fine but have very little wiggle room with an unsecure job at the moment  . If that were not a concern I'd be hitting every major advance out there. But this way, I get to remember to lean on God and not necessarily every *expert* out there though many are quite clearly helpful.
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4Real Forums : Special Blessings
Topic: Asperger's it is x2 now what?
