New Members Please Introduce Yourselves Here!

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• by
  • diana3girls
  on May. 10, 2007 at 5:13 PM
• Hi, my name is Diana Poole.  I am the mother of three daughters, the youngest of whom was diagnosed with PDD/NOS.  She has been in therapy (speech, occupational, and physical) since she was 2 and started kindergarten a year late.  She didn't start speaking AT ALL until she was four.  She is now almost 7 and talks more like a four year old, but we are so proud of her!  I'm glad I found this group, if anyone wants to talk, send me a note!

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• by
  • determinedmom
  on May. 18, 2007 at 2:00 AM
• First let me say that I thank God for all of you. autismom referred me to this group. I literally started crying because now I feel that there is some hope that my son may be able to communicate or maybe even talk. He is now 9 yrs old. Very little no talking unless I prompt him to say something and unfortunately he is regressing to not even wanting to say one word.
  
  I am in the process of having him to participate with this process called auditory integrated training or digital auditory aerobic training (which is very expensive). However, one of the cafe moms suggested that I purchase cd's instead. I am really thinking about it. I do not know what to do.
  
  I am sleepy right now, but can not wait to pick up where I left off tonight and read more from this group.
  
  Thank-you,
  determinedmom

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• by
  • goodasitgets
  on May. 18, 2007 at 2:48 PM
• 
  

  Quoting determinedmom:
  
  First let me say that I thank God for all of you. autismom referred me to this group. I literally started crying because now I feel that there is some hope that my son may be able to communicate or maybe even talk. He is now 9 yrs old. Very little no talking unless I prompt him to say something and unfortunately he is regressing to not even wanting to say one word.
  
  I am in the process of having him to participate with this process called auditory integrated training or digital auditory aerobic training (which is very expensive). However, one of the cafe moms suggested that I purchase cd's instead. I am really thinking about it. I do not know what to do.
  
  I am sleepy right now, but can not wait to pick up where I left off tonight and read more from this group.
  
  Thank-you,
  determinedmom

        Welcome welcome Determinedmom!  I never give up on verbal speech and keep working on that at home and outside therapy.  Our biggest success stories have been in Signed Exact English, written communication (though my son's handwriting is very messy), and most recently learning to use a communication device.  My son's receptive language is really pretty good but he only has a few spoken words and still prefers to ask for something in sing or pointing or bringing an item to us etc.  With the communication device he has been able to answer questions more easily beyond single or double signs or nodding/shaking his head. Through handwriting he has begun composing his own creative COMPLETE SENTENCES for the first time this school year (age9 to 10) He just turned ten this month. I still want lots of increases in verbal speech but more than t hat I want increases in overall communication, in whatever mode works best for my son. 
  It is so hard for our kids to manage the process of speech and the structure of language itself especially if you have auditory processing difficulties , Apraxia, and the li ke co-existing with the Autism. It is no wonder they may cease to even try.  There re so many factors involved in learning to communicate but it is so critical to independnce that we just have to keep  playing detective and trying different methods of instruction and offering up different modes of communication. The things they are most  motivated to get ar the obvious entry points for us to encourage more communication.  One of the things my son is really motivated to ask for now are his school papers. (REALLY!)
  We have experience with AIT Auditory Integration Training, as well.  My son participated in a progam called Samonas that was a series of CD's with varried frequencies some even modulated above the range of normal hearing. Under the direction of an audiologist we administered the prescribed program progressing through the CDs and adding more listening time with s pecial h eadphones each day.  I also p ut my older osn thoughit because at the time he was taking medication for ADHD and I wanted to see if AIT could offer him some progress. (He is has been off of medication since the start of 6th grade but I don't attribute it to AIT>>>I believe he learned to manage his behaviors with better organizationasl skills like using a journal and simple age based maturity). AIT cost us around $2,000 and no improvement in speech BUT by all means I would encourage anyone to try it because it will have very positive results for some, and you have to leave no stone unturned.  I still have the headphones and CDs we purchased and may try the progrtam again on my own.  I also used the program and thought it helped me have better focus. 

• 
• by
  • autismom
  on Jun. 18, 2007 at 10:36 PM

• Hi everyone!! I have a 12 yr old daughter dx autism. Bianca is mostly non-verbal. Well, she says 3-4 word phrases and verbally expresses most of her needs, "hungry, mmm, tummy", "cup, black soda!" (coke, which she does NOT get, but she still gives it a try) and "boo boo hurt", stuff like that, but if you ask her a direct question, she just echoes you softly and doesn't know how to respond. Not sure if that is considered verbal or non-verbal. Anyone know?

  Her speech therapist in school and I decided that we wanted to work on more functional speech, rather than concentrate on articulation, being that most of the words she does say are understandable, (she has touble with L, she'll pronouce as "p", ex: PEGS, instead of LEGS. and other letters that she has trouble pronouncing) so for the most part you get what she is saying. Bianca is at a stage where she gets bored with discrete trial sort of set up. She gets much more out of "real world" "real life" situations where she NEEDS to use her words.
  I also wonder if Bianca would be a good candidate of a communication device. I've always thought it would take from her HAVING to say, and just rely on the device. It's just an assumption, I've never tried it with her and never looked into it thourouly enough to have a concrete opinion. Her therapist doesn't know much about them either, so can't really steer me in any direction. She says everything is worth a try when it comes to speech.  She gets speech in school 4 times a week, 2 in a group setting and 2 one on one. Working on "wh" questions with her and pics of her family so she calls everyone by name and know "cousin" "aunt", etc...
  At home I am in the process of putting together varios picture schedules. Bianca has always done well with PECS in school, she's a pro. But at home, she has out right refused to use them until recently. Now she is working on an independant activity schedule with home program teacher and also when we go out to the market with the teacher as "community" she uses pictures for her shopping list and puts them in an "all done" pocket when she places the item in a shopping cart. I myself am working on a pic schedule for her morning routine (hoping to stop the constant prompting to get ready), a food chart where she can pick her after school snack with out wanting EVERYTHING in the pantry at once, and maybe she can pick dinner once a week, etc. Also a pic schedule for her school outfits and even week end. She has this habit lately of wanting to wear the same out fit, underwear and all, EVERYDAY. So every morning, she'd pull it out of the hamper, socks and all and dress herself really quick, before I had a chance to tell her NO WAY!! The schedule I'm thinking of is something where she can pick a top, shorts or bottom and shoes and leave it up till the next morning. No more fights in the morning if we take care of it the night before. Also I'll have a pic of a Hamper or washing machine to replace the "all done" pocket. Oh, and one more. I need another for a general description of her day and the next, so she has a visual reminder that tomorrow her home teacher comes and Saturdays we will go swimming and if she earns stars maybe Sunday we can get her a movie or something. She seems to have alot of axniety over things like this, the not knowing and the fear that I won't keep my word. Hopefully with a visual, she will know that we are both agreeing to the same thing.
  She is working on a typing program with the home program also. She is up to 3 words, 5 letters in each word with a green dot between the written words to signify the space bar. Her handwriting is not so good, but she can spell her first and last name and "pizza", so she signed all her mothers and fathers day cards "Bianca Alvarez Pizza"!! Letters outside of the ones in her name, are a mess. She is all over the paper, and writes so hard she ripps the paper.
  She has 4 site words that we know of so far. We didn't teach her, we just showed her words of pictures that we had on the shopping list and she knows "milk", "cheese", "bread", "orange juice", oh and "pizza", sorry that's 5. She also recognizes "police", "danger", "poison", "stop" "go", "restroom", "Rail road", and that's all great but, I'm almost sure that she doesn't know what most of them mean!!!
  That's pretty much our situation, communication wise. If anyone has any suggestions they think may be helpful to Bianca's communication, please, please, let me know. Please feel free to suggest, give you opinion and comment on any of my posts or replys. I would love to hear of different ways parents address their child's needs and hope to learn from them. If there anything you think I should or should not be doing, please feel free to voice you opinion to me.
  Thank you so much, goodasitgets, for your warm welcome. It seems like an informative and interesting group to be a part of. Glad to be here.
  
  

  Veronica ~ autismom

  
  
  
  
  
  

  Veronica ~ autismom

• 
• by
  • Mindlessbear
  on Jun. 23, 2007 at 10:32 PM
• Hi everyone. My name is Heather, and I'm a SAHM and a student. I have 2 children, but the one that I'm here for is my daughter. She's 20 mos old, and is a preemie. She was born with tracheomalacia, GERD, and dysphagia. She now has a significant speech delay. We've had speech therapy since she was born (even in the NICU), and we started teaching her ASL the beginning of this year, and it's been remarkable for us.
  
  She's been having ear infections since April 2nd. Now, we know the delay was long before that, but they are hoping that after her surgery this coming Friday, we'll see some quick advances in her speech. She's having a bilateral tympanostomy and adenoidectomy done on the 29th. She's passed her hearing tests. I'm just not sure how clearly she can hear at this point, or if she's capable of making the sounds. I know her understanding is excellent.
  
  So, we don't have any official diagnosis on why her speech is the way it is. She's certainly trying to talk more suddenly, but nothing is very clear or succinct.
  
  That's us. Thanks for being here!
  

• 
• by
  • majennca
  on Jun. 30, 2007 at 2:28 AM
• Hi my name is Jennifer and I have a 3 year old son and a 2 year old daughter,  both with speech delays.  My 3 year old has gone through speech, OT and PT and is now saying a few words since he started in Nov 06.  My daughter on the other hand says about 3 or 4 words, she is also in speech and ot.  My son was tested for autism and we were told that he is not autistic but he did hit a few points but not enough to diagnois him.  My daughter i'm just not really sure of, I didn't know if this is all because she was an early baby or not.  And I also don't know if maybe the meds I was on when I was pregnant with both kids didn't somehow cause this.  My ob put me on tributiline to stop my contractions since I was in preterm labor with both babies.  So if anyone has any clue if this could be related let me know. 

• 
• by
  • goodasitgets
  on Jun. 30, 2007 at 11:17 AM
• 
  

  Quoting Mindlessbear:
  
  
  She's been having ear infections since April 2nd. Now, we know the delay was long before that, but they are hoping that after her surgery this coming Friday, we'll see some quick advances in her speech. She's having a bilateral tympanostomy and adenoidectomy done on the 29th. She's passed her hearing tests. I'm just not sure how clearly she can hear at this point, or if she's capable of making the sounds. I know her understanding is excellent.
  
  

  
  I hope the surgery went smoothly.  I am thinking of her and look forward to hearing how she is doing. My son had his adenoids removed also, and it really made some significant improvements for him.  He also used P.E. tubes for three years which also helped, (even in the area of behavior...well,I am sure he felt better with the tubes in and the adenoids gone).  I wish he had had tubes earlier. He had ear infections regularly form the time he was about 6 months old despite the fact I breastfed.
  

• 
• by
  • martaraquel
  on Jul. 15, 2007 at 8:50 PM
• Hi my name is Marta Raquel and i a teacher of child with autism and other disabilities. I expect found a good friends and a lot of good info

• 
• by
  • sunshine5705
  on Jul. 18, 2007 at 9:18 AM
• Hi, my name is Beth I am a SAHM of 3 wonderful boys, ages 4, 20mo and 2 mo. My two oldest boys both have Fragile X Syndrome, the 4 year old is also autistic. Jeremy (4) has struggled with global developmental delay since birth, but has improved greatly. He didn't say his first word till around 2 1/2 years of age, and just started using 2-3 word combinations in the last year or so. We use sign with both boys. We tried PEC but Jeremy wasn't really interested. But we are going to start using picture schedules for our daily routines.

• 
• by
  • mac.mommy
  on Jul. 26, 2007 at 2:56 AM
• Hi,
  
  My name is Robin and I have two boys with diagnosed with autism.  The oldest who just turned 10 was diagnosed at age 3 with autistic disorder, and verbal apraxia.  He is considered to be non verbal and we've found that his apraxia is more pronounced as he's gotten older.  He will repeat exactly what he's said as if he's arguing he already said something.  He's a wiz at pecs but they're not fast enough for him and he gets frustrated and throws them away.  We have him in a private school for autistic children and are still struggling to get him his augmentative communication device.  The intermediate unit he was originally in dropped the ball on the device and we've been with out a loaner unit for over a year.  He does well with the Dynavox MT4
  
  His receptive skills are high but expressive is below normal.  He's stubborn though he's mellowed considerably. 
  
  We did have his hearing checked at 18mos by means of the brain stem audio test.  The audiologists was positively giddie showing me a text book example and that he was text book perfect in hearing according to the tests.  Sign language has been difficult to master due to components of motor apraxia which often accompany verbal apraxia.  His handwriting is horrible though it has improved.
  
  I was reading through the posts and recalled an article and litigation on medication to prevent preterm labor.  The articles on terbutaline & the autism connection are located on www.usautism.org/terbutaline_interview_autism_one_radio_082305.htm
  
  For audio processing issues, we first had to desensitive our son.  Simple put, we ignored negative behaviors and gradually put him in controlled situations where he was exposed to the sounds he didn't like...ie... I took a stack of cds and drove around town because I was not going to live my life listening to Barney and Friends 24/7.  He stimmed on the the music and no one could listen to anything else.  I played every music format except heavy metal or anything with inappropriate language.  I ran the vacuum as I normally would, ran the appliances I had to.  I refused to let him isolate himself and it honestly didn't take that long.  I reinforced good behavior with his preferred item at the time it varied between Barney & certain videos.
  
  The next step we turned to software programs including Earobics and Great Action Adventure.  Both can be obtained through Different Roads to Learning.  The Great Adventure software is full of visual and auditory reinforcers and parental controls allow me to adjust the levels of work as needed, increasing or decreasing the level of reinforcements.  Drills are delivered in discrete trial formats.  I was going to get the Discrete Trial software but my behavior specialists to me the Great Adventure could do that just as well.  It covers pre-k through 12 and reinforces auditory words with sign and pictures.  The kids love the program.
  
  I usually attend the National Autism Conference held at Penn State in State College PA.  It's always the first week of August and Carbonne is a some type of an associate professor. The title's eluding me at the moment.
  
  Vince Carbonne recommended and showed examples of clients using Nancy Kauffman's Apraxia program.  Her program is featured on www.apraxia-kids.org  Search for Successive Approximation Method  I switched seminars to see her presentation following Carbonne's at his recommendation to the group. 
  
  My younger son is 7 and higher functioning.  He was diagnosed at 3.  We knew about the older child's earlier than 3 but it took us a year and a half to find someone who could do a diagnosis.  The younger one did not present the same characteristic. They're as different as night and day.  My younger one was highly echolaic and had good sounds.  Doctors were concerned with him learning behavior from my older one initally.  I was actually told 'lightening doesn't strike twice."  The rate of a second child with autism is 1:17 now.
  
  My youngest is EXTREMELY willful.  He presented as echolaic, hyperlexic, ADHD.  He's also a picky eater.
  
  For eating issues, I attended a seminar presented by the authors of "JUST TAKE A BITE" , Lori Ernsperger and Tania Stegen-Hanson, which examine the sensory issues and helped to develop ways to overcome them. 
  
  My younger son attends a hybrid program going between regular ed and an autistic support room.  Doctors diagnosed him as PDD-NOS at 3 and the school psychologists couldn't place him on the autism scales.  Four different opinions were gathered with vary little difference on the scales.  He did not place on the autism scale; however, he did have a few tendency.  I know it makes no sense but that's what they came up with.  They thought an aspergers test would be more suitable at the time.
  
  I have found that he's too imitative and adopts behaviors from other autistic children in the form of task avoidance, escapism, defiance.  He argued with his teacher over potty training telling her 'no potty today' 'no underwear' 'I don't think so.'  We're working on scripting with him now and I'll have to look up the title of the book I just picked up on developing conversational skills in non verbal children.
  
  Sorry, I'm in information overload and my older one just woke up so I'm off to bed.  It's nice to see this group!
  
  Robin
  
  
  

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