when will we get speech

STAR - posted on 07/12/2011

HI HEATHER,
thank you so much for your feedback, its great to hear sucess stories. dina is doing very well and i cant wait to have a simple conversation with her soon, i do need to be patient as everybody tells me to be but for a mother its very hard. thanks again.

Heather - posted on 07/12/2011

Hi STAR! Speech comes slowly. You have to be very patient. There is now proof that "developmental" therapies are best for learning to speak. This was proven a couple of years ago by a group in Colorado. They published a method called the "Early Start Denver Model" It's designed for much younger kids, but at least there is now support for the type of method we follow with our son.



We follow a program called "Communicating Partners" There is a wonderful discussion group on a listserver with the speech therapist (30+ years experience) James MacDonald. His website is: http://jamesdmacdonald.org/Articles/MacD... It's similar to Dr. Stanley Greenspan's "DIR/Floortime" method, but from a speech therapy perspective. You should know that ABA has a different philosophy about teaching speech. Many people start ABA, but then switch to a developmental speech method called RDI.



If you're interested in DAN! Read "Changing the Course of Autism" by Dr. Bryan Jepson, MD. It talks about the science behind the treatments advocated by DAN! There is also now a credentialling group for DAN practitioners. It is called INCEPT. It is headed by Dr. Doreen Granpesheh (founder of the CARD method - an ABA type therapy) and another Dr. whose name I forget.



If anybody here is interested in Sensory Processing Disorder, I recommend reading "The Sensory Sensitive Child" and "The Out-of-Synch Child."



If you want a good book on what it's like to do ABA and follow the DAN! protocol, read Leanne Whiffen's "A Child's Journey Out of Autism."



My son started ST at about 2 years old. He has PDD-Autism. His first words were at 18 months, but he lost them. They were "Mama" and "hair." He started using words at 4 years old. Now he is 8. He uses mostly 3-4 word sentences, and we have simple conversations back and forth. He is mainstreamed in a 3rd grade class for next year. He has been mainstreamed since 1st grade, with an Individual Aide (IA) assigned to him.



It's WONDERFUL that your daughter uses "Mama" and "Papa". My son learned "Daddy" probably about 6 years old too. So YES, speech does get better and easier. It just takes time and patience. Basically you have to approach the child at her own level of ability to speak. Don't overwhelm her with complex language. Talk about the things she wants to talk about. You will then eventually see MORE talking and longer sentences.



I'll try to post more later.



John (Heather's husband)

Diane - posted on 06/10/2011

Re: GF/CF Diet, another thing to keep in mind is that the diet trial really needs to be all or nothing. You can't KIND OF do the diet. A friend of mind told me awhile back that her son had been GF/CF for six months, and she wasn't seeing the benefit any longer. Then she went on to tell me that he only has macaroni and cheese one night a week, because it is is favorite, but he's strictly on the diet the rest of the week. That really means he hasn't even really started the diet yet, because gluten and casein has never really been removed.

I've also mentored families on the diet, where parents have complained that it was not making a difference, only to find a few foods being given that had hidden sources of gluten and/or casein. When people tell me it isn't working, my first thought is to find out in detail what is being eaten daily, and look for hidden sources, such as using the same toaster used for glutenous bread (crumbs matter!), or using the same jar of mayo or peanut butter for wheat bread too. Hygeine products can cause reactions too. The first infraction I found in our diet trial was that the bread marked "Wheat Free" (which my son violently reacted to), ended up containing gluten as ingredients included Oat Flour. Wheat Free does not mean Gluten Free. Play-Doh, stickers, many crayons and art materials contain gluten too.

Another common thing I've heard is they tried the diet for two weeks and it didn't work. The trial should not be less than 3 months as it can take that long or more for gluten to completely leave the body.

I know the diet doesn't work for every child, but statistics show that 70-80% of kids have positive results. Many need to eliminate other ingredients as well, such as soy, corn, rice, beans, phenols, etc. For our son, anything he craved and overate was suspicious, and was removed for at least six weeks, then re-introduced in moderation. He has been gluten free and dairy free since 2001, as well as peanut free, pineapple free.

STAR - posted on 06/09/2011

hi pauline, my daughter was weak muscle tone and as a result she never crawled n went straight into walking at 2yrs old. and the reason he did walk is because we had a great pt that would message her legs everyday n also use a viberator, and after a few months she walked. then came speech and she had no other symptoms n passed 3 psycology tests. at the age of 3 they tested her again and diagnosed her with pdd n thank god they did cause i got more services. she understands everything so sometimes i tell myself then why wont she talk. she does have words but no sentences. was ur daughter speech delay n when did she speak? just this yr she has improved so much, so iam excited for the summer since she is going to summer school. they also worked with her with closing her mouth n saying mmm n worked with chap stick, putting it on while her lips were together so she can get the hand of it. blowing into a flute in music class also helped. now i want to get the spin tooth brush n just give it to her to play with in her mouth and maybe the vibration of that should help.
take care

Elissa - posted on 06/09/2011

Hi I went through the same thing with my son! When he was in kindergarten, one of his goals was to speak 2 word phrases...now he is 12 and you can't tell he ever he talked late. He was misdiagnosed with ADHD until recently, I got a diagnosis of Asperger's Syndrome. I just wanted to write you to give you hope because I have been in your shoes. Just continue to provide her with speech therapy and make sure her school is accomodating her as well. Does she have an IEP(Individualized Eduaction Plan)?

Pauline - posted on 06/09/2011

Hi there. I would just like to say that my daughter has also low muscle tone - diagonised since she was 1. At that time it was focussed on gross motor skills - walking etc. What was not realised until we found a good speechie at age 51/2 was that she had low muscle tone in her mouth/face area. We went through a stage of "flicking" her cheeks to improve her tone, and also encouraging lip closure sounds like mmmm. Also i had never heard my daughter use the 's" sound until the speech suggested she hold her finger to the corner of her mouth to say "s". Hayley is now 8 and still has weekly speech appointments, still has to be reminded of saying "s" and "c/k" sounds. When she is v v tired there are signs of dribble, but overall she has improved. Also we space out appointments with OT, which have spin off effects for gross and fine motor skills. I am interested to here how you go, cause you don't often get similar tone issues. By the way Hayley is also PDD, with processing disfunction and sequencing issues. She is also very visual and works well with pictures which can then be translated into her homework. Good luck Pauline

Crystal - posted on 06/08/2011

hi star,
thanks for your optimism! He will be four in september and he uses alot of sounds in the right context, so he is trying very hard. He is very anxious and his anxieties seem to get in the way of him learning. he attends ABA therapy 15 hours a week, and his progressing slowly. He can definately imitate, and when he is interested in something, he can learn it....however, he has very few interests in toys, so that makes it difficult. The good sign is he seems to understand everything that I say.....and listens to me most of the time.....I hope that someday he will talk to me, so I can hear "mommy i love you"
or "mommy, I need __________". but he does say MOM consistently, and that makes my heart melt. Thanks again.

Jennifer - posted on 06/08/2011

The Gluten Free Casein Free diet is one of several diets that can help. But it has worked for many people. Don't listen to anyone who says that a treatment is b.s. - terrible advice and insulting to anyone who the diet has helped. Just because it didn't work for their kid doesn't mean it won't work for yours (and vice versa). Regarding DAN doctors: DAN stands for Defeat Autism Now. A DAN practitioner can be a doctor, therapist, dietitian, etc. They follow a biomedical approach to treating those with autism: any one of several diets, vitamins, supplements, therapies, etc. MY DAN doctor DOES accept insurance as many do - he is a regular pediatrician and codes my son’s visits as checkups. DAN doctors might not be close to your home but they will work with you over the phone and internet. They listen to what your kid’s problem areas are and help you determine what direction you can take. The Autism Research Institute has a catalog on their website where you can find DAN practitioners in your area. What isn't usually covered is the treatments themselves and it can get costly depending on what you try. But determined and dedicated families can manage. Try one treatment at a time. This way you know what is working for your kid and what isn't. Usually 2 to 4 weeks in between starting each treatment is enough to know. A DAN doctor is definitely worth looking into.

Connie - posted on 06/08/2011

THANK YOU; NOW I GET IT - GLUTENFREECASEINFREE. I'll try the vitamin route since she's such a picky eater maybe I can get her to take a few more pills that are vitamins. She's soon to be 23 yrs old; we had a very late ASD diagnosis - age 22! She's also has developmental delays which apparently "hid" the autism to teachers, but not me! thanks

STAR - posted on 06/07/2011

hi diane, what is the tomatis therapy?

STAR - posted on 06/07/2011

hi connie, dan doctors are doctors that help kids on the spectrum. they dont cover insurance n they are very expensive. they help you with the gfcf diet which is gluten free and casein free. no milk products and no wheats barley etc. which is really bullshit cause we did it for a yr n didnt see any changes. before going to a dan doctor visit the site for gfcfdiet n look through it first. its a very hard diet cause u remove everything ur kid loves. some parents say it helped their child but i think its bs. what helped us most is the vitamins. multi vitamin, fish oil, vutamin c, vitamin b12. good luck

STAR - posted on 06/07/2011

HI CRYSTAL, that is sooo not true what ur speech terapist said, they really dont know. i have a friend that her son was non verbal two yrs ago n now he is 6 n a half n wont shut up. dina didnt have any words last year n only babbled n this year she just turned 6 n has about 60 to 70 words n understands everything, but no sentences. her teachers say that she will get speech when ever she is ready. look at ur other son, he started with babbling first n know he speaks. every child is different. my other girlfriends daughter spoke at 7 n now u wont even tell that she was speech delayed. as a mother we always worry n thats my fear also. does ur son understand when u talk to him or tell him to do something? what other issues does he have? my daughter understands evrything n knows her abc"s n 123"s, she knows all her colors and when she was tested on the autism speech test she scored 15 out of 20 which is pretty good. dont give up, n they say that if they understand everything n have a few words then they have a high chance of being fully verbal.

Connie - posted on 06/07/2011

help; you ladies are using acronyms which I don't know-- what is GFCF? What is a DAN? thanks Connie

Liza - posted on 06/07/2011

Once we removed all gluten and casein from our son's diet his speech improved. It improved more so once we starting giving him vitamin B injections. The vitamin B was huge. If we stop giving it to him he will actually start talking less. You need to see a DAN! to get a prescription for injections but you can get it in a liquid form at places like WholeFoods or on-line. Good Luck!

Sheila - posted on 06/07/2011

Hi Star,

Since her receptive language is good, you might also want to look into augmentative speech. So, you can get an IPAD, download a whack of free apps...food, social situations, emotions, etc...

So, she has the IPAD...touches food app...scans for the appropriate picture..touches it and it says, CAN I HAVE AN APPLE (just an example).

This is an incredible time to help children with limited expressive language. Technology is just exploding and we can help so many of our kids to communicate because of the ability to augment what they already have.

As well, have you tried the OLEWIN reading method with her? If she knows her letters, numbers, and can match, she can learn to read (even if she can't verbalize it) Reading leads to writing! Give her the tools and she will build that communication bridge!

Good luck,

Sheila

Crystal - posted on 06/07/2011

hi there. i have 2 boys with autism....my five year old was nonverbal at age 2, but at about 2 1/2, he started using words, accompanied by the picture exchange communication system. He now can talk the ear off you like any other boy his age, but my 3 1/2 year old still is nonverbal, only says mom-mom and babbles alot. he says alot of sounds in the right context. I have had 2 speech therapists tell me that if he isn't fluently talking by now, chances are he will never talk in complete sentences, rather will use one or two words to express his needs or emotions. I hope that they are wrong, but am willing to accept what they say....we are usings PECS and visuals and some sign language too. whatever we can to help him communicate and ease his frustrations. I wish you luck.

STAR - posted on 06/07/2011

I ALSO DID THE GFCF DIET N WENT TO A DAN DOCTOR N SPENT LOADS OF MONEY BUT DID NOT SEE ANY CHANGE AFTER A YR. SHE IS TAKING MULTI VITAMINN FISH OIL ,VITAMIN C, VITAMIN B12. WHAT OTHER VITAMINS SHOULD I GIVE HER. IAM EXCITED FPR SUMMER SCHOOL. SHE WILL BE GOING FOR 6 WEEKS 6 HRS A DAY. EVERYDAY I SEE GREAT IMPROVEMENTS IN HER BUT I GUESS SPEECH WILL COME N SURPRISE ME. THANKS GIRLS

Taleese - posted on 06/07/2011

I did have that fear. But it worked itself out. My son will not eat GF so that's not an option he tastes the difference. I tried meds one time against my better judgement and never again. He will take a vitamin and he too knows the words just cudnt verbalize them. I have a lot of links and info looking@ pdd dos thru an adult who is 22 and grew up with it. Brings much light and perspective on what our children go thru. Everyone chooses their own form of treatment and im not saying negative to those whom are GF or meds etc. They just don't work for us. Thru many tears, IEP meetings and lots of work@ home we are doing great, feel free to email me or I have lots on facebook I share. Under taleese sickels on fb or email tcastoren@gmail.com keep ur chin up

Jen - posted on 06/07/2011

Has your daughter been evaluated for mitochondrial disease? Sometimes in girls, special diets and vitamin regimens can make a huge difference -- if there is an underlying medical cause. See a developmental neurologist.

Also, using intensive ABA and/or RDI therapy would probably help a lot too. But it's very expensive.

Diane - posted on 06/07/2011

Our son was nonverbal when he was diagnosed with mild-to-moderate autism just before turning 3. We put him on the GF/CF diet, started seeing a DAN doctor for biomedical intervention catered to his specific needs, and implemented a 40-hour per week one-on-one ABA program. By the time he turned four, he had 300 words. Not nearly age-appropriate, but helped him immensely because he was able to communicate his basic needs and desires. By age 5 he was highly verbal, and now at age 13 he is an A/B Honor Roll student, and most people he meets have no idea of his autism. He still has an IEP in Middle School, but hasn't qualified for speech therapy since 5th grade. Diet has been huge for his speech development. Other things that have helped with speech include DMG, B-12 injections for a few years under the care of his DAN Doctor, 90 hours of Tomatis Listening Therapy over five months when he was 6 yr's old, which helped him improve his overall speech and cognition over 2 1/2 years. I kept notes about his Tomatis experience, and when he started Tomatis, he was speaking on average of 3-5 word sentences. By the third block of Tomatis therapy, his language exploded to long run-on sentences. I remember him having a conversation on the patio with a neighbor he had never conversed with before, He told her the whole Nemo story, using his own language because this was when the movie was still in the theaters and not yet in video. He wanted her to know the story so that she could take her son to see Finding Nemo.

Jennifer - posted on 06/07/2011

Diet, speech therapy and supplements helped ours. Especially the GFCF diet, fish oil and DMG (in this order). Those had him showing huge improvements in speech. He went from no words, to single words (after diet and fish oil) to multiple words (after DMG).

STAR - posted on 06/07/2011

hi maureen and taleesa, thank u guys so much for responding. its nice to get feed back from people that have been through this. dina is in kindrgarten n recieves speech 5X a week in the class one on one for an hr. her speech has improves alot since sep. she catches on things very fast n has never regressed thank god. her speech teacher says that she has weak muscle tone n is recieving pt for that n is getting stronger. she also has weak muscle tone on her mouth also so maybe thats why she is slow in speech. so it does start with one word phrases then gets better? what else can i do to help her with her speech? i should just be patient? i always have that fear of her not talking but again i tell myself that if she understands everything n had words then why wouldnt she. did u guys have that fear also?

Taleese - posted on 06/07/2011

Has she started school and had a speech eval? My son is now 9 and is speaking well. When he started kinder tho he was only using a couple words. He is still in speech and more then likely will be thru school. Don't rush it, it will happen when she's ready.

Maureen - posted on 06/07/2011

Star, has your daughter been evaluated by a Speech/Language Pathologist? This is absolutely necessary. An SLP will/can work with your daughter. My daughter has been receiving speech services since she was 3.5. She's almost 7 now. It took awhile, but she has absolutely made progress. Is your daughter on an IEP?