Tired of Doctors. anyone have any ideas?

[Nandid]

This is sort of a vent to. Ok here goes. My DD (3) has a severe speech delay. She has said the same 15 words since she was about 2. She is learning asl and to me that is fine.

In the past year we've been to every doctor i can think of and nobody seems to have a clue of what may be wrong. So i'm sick of doctors. Nobody will even give me an idea. I have a child with excellent hearing, above normal inteligence(she knows the entire alphabet, numbers and many other skills most would associate with the 5 or 6 year old group) she just doesn't talk

She goes to speech therapy every week. she hates going. Throws tantrums, screams and says No over and over. I sit in on every session. The therapist plays games with her and they seem to have fun except when it comes to trying to get her to talk. she places her hands over her mouth utters a few no's and thats it end of session. she withdraws and than it takes me an hour to get her to even go back to speaking asl. The speech therapist doesn't want her learning ASL because they say over and over she can talk. She said her first few words right about one and never really picked up any more until right about 2. Her vocab is about 15 words, most of the words she says are about our dog. She has one sentence and thats about the dog.

She is suppose to go to a special education preschool, but she doesn't like that either. she signs that those kids are babies and she is a big girl. They say being around speaking children will force her to talk, because if she wants things she will soon or a later ask for them. I gave up on the preschool after three weeks. was tired of coming to pick up my child and find her in tears. she would not get to color or play with particular toys because she didnt ask for them. They tell me the same thing don't teach her ASL because she can talk.


Her regular pediatrition doesn't have a problem with me teaching her ASL. He feels she needs a way to communicate. It's not him i have a problem with...it's all the specialists who don't seem to know diddly.

Anyone else had a child like this? Anyone think i'm out of my mind in wanting to take her out of speech? Any suggestions.

 

[jodifla]

I sent you a private message, too, on where we got help for our son.

Check out Dr. Jim McDonald's website, Communicating Partners. Also the book The Mislabeled Child by the Eides. Lots of people like the Hanen Method, too.

 

[bookwormde]

THere are lost of resons for that lack of speech so it is a bit of an adventure to find the source. It sound like you need a new speech terapist, sometines it is just not a good fit. The first rule with kids is to develop a relationship and make it in some way fun. ASL is a great idea (our state is in the process of defining it as a world language for eductinal purposes), and will keep her frustration level down and delelopement on track.

bookwormde

 

[iwrbnd]

I am a teacher and have had a couple kids with "select mute". They would only talk in certain situations, usually at home. Just a thought. Keep us posted! I'm taking it that nobody sees her on the autism spectrum, right?

 

[deerhart]

besides ASL you can try PECS (essentially picture communication) which is often used with speech delayed and autistic children.

One thing that kept my son from speaking (at least certain sounds) was that he was tongued tied and no one caught on until he was almost 3.5 years old. Quick little surgery and suddenly words we had never heard before (like his name) came flowing out. May or may not apply, but it is something to check!

 

[Nandid]

I am a teacher and have had a couple kids with "select mute". They would only talk in certain situations, usually at home. Just a thought. Keep us posted! I'm taking it that nobody sees her on the autism spectrum, right?[/QUOTE


The idea of selective mutisim has come up several times. I have done alot of research on it. I do see some of the signs of selective mutisim in my daughter. Like she basically only talks when she is at home, however we are still at that 15 word level. Actually we are up to 17 or so now. Started saying two new words the other day. Those are the only words she says..and almost every single word she says has to do with our dog. The one sentence she does say is all about the dog.

Autisim has come up a few times during evaluations, but she doesn't hit any of the markers for it. Her fine and gross motor is way advanced. Her social skills are typical of a 3 year old and her attention span is remarkable. She role plays, she plays just like a typical child her age.
She learns easily and is able to point out colors and numbers if you ask her where they are.

The only thing anyone has ever found wrong is she doesn't talk. I'm tired of the specialist. In the past year we've been to every specialist possible. weve had tests galore. My little one has a few other minor health issues but nothing that would affect her speech.

 

[Nandid]

THere are lost of resons for that lack of speech so it is a bit of an adventure to find the source. It sound like you need a new speech terapist, sometines it is just not a good fit. The first rule with kids is to develop a relationship and make it in some way fun. ASL is a great idea (our state is in the process of defining it as a world language for eductinal purposes), and will keep her frustration level down and delelopement on track.

bookwormde

We did try a new speech therapist. In a year we have had four different ones. She responds to each of them the same way. Shes ok playing games with them and pointing out pictures of things when asked. But the minute they say can you say "x word" or say they have pictures of our dogs and they ask her whos that. She puts her hands over her mouth and clams up. She stops makeing noises, stops communicating with ASL. Than refuses to even play games..shes done with the session thats it. She spends the next hour or so in complete silence, no noises, no asl, nothing.

She doesn't ever seem frustrated when she cant say something. She has become very resourceful on showing us what she wants or needs.
If she cant find someone in the house, like a sister or brother...she goes and gets a picture and brings it to whoever and points and makes sounds. Overtime everyone at home has figured out thats her way of saying where is this person. She knows how to get what she needs, shes very smart.

 

[bookwormde]

One of the more common reasons for what you describe is a characteristic of perfectionism, being unwilling to speak until the child perceives it as being equivalent to adult speech. While you certainly cannot rely on this it is relatively common for these kids to start speaking when they are ready and have a grammatical structure that is equivalent to an adult (I had a niece who was like this, spoke very little until about 3-1/2 YO and after that talked like and adult and we have not been able to shut her up ever since, she is graduating from college next year with a double major is accounting and computer science in 4 years) You indicate that she has atypical attention abilities, hyper as opposed to hypo that we classify as ADD so that is a good clue. Keep an eye on her social skills, since girls are often exceptional actresses and have the ability to manic social skills to such a level that all but the most experienced clinicians miss it. The best clue is if when put in a very unfamiliar social situation for which she has not seen a prior "script" if she can draw on other social skills to independently create an appropriate social response. It sounds like she is very smart so if this is an issue it typically does not become obvious until the "unwritten social skills" are a big part of social activity and for girls that may not happen until as late as 12-15yo. The fact that her motor skills are very advance is another indication of differences. one of the great misconceptions about Autism genetics is that all characteristics create a deficit which is not at all true and many of our kids have amazing gifts in areas that uniformed clinicians expect only deficits.

IF you have not allready get a copy of Tony Attwood's " The complete guide to Aspergers" which is availabel on Amazon for about $17. While with your daughter intellegence and self adapting abilities it is very likely she will not get a formal diagnosis, understanding as many of the characteritices (both challenges and gifts) will be very useful in helping your daughter florish.

bookwormde

 

[deerhart]

One of the more common reasons for what you describe is a characteristic of perfectionism, being unwilling to speak until the child perceives it as being equivalent to adult speech. While you certainly cannot rely on this it is relatively common for these kids to start speaking when they are ready and have a grammatical structure that is equivalent to an adult

I second this. My oldest child (who has lots of alphabets) REFUSED to say words that had several sounds in them because he couldn't correctly pronounce them (one of which was his name). It turned out he couldn't pronounce these sounds due to being tongue tied and once we had his tongue clipped they all started spilling out, but it was his perfectionism streak that was keeping him from even trying. Because he wasn't trying, no one ever caught the problem with making the sounds and thus he didn't get his tongue tied dx earlier.

 

[Nandid]

I really appreciate all of your imput. I've done alot of research online and read countless books, but it's wonderful to hear other peoples suggestions.

She is my youngest child. I do have to admit that I am actually not surprised that she has some sort of issues. I had a very rough pregnancy with her and many times throughout there were many touch and go's where the doctors weren't sure she would even survive.

My daughter pediatrition has a couple times brought up that her speech issues may be a result of numerous medications i was given during my early stages of pregnancy. All were unavoidable.. i had a major surgery and other numerous problems. It's actually a miracle my daughter was even conceived(long long story, but birth control and a rare disorder should sum it up)

I will keep you all posted. We are off to a new speech therapist this week. This lady is young and recomended by our pediatrition. Until a week ago we were limited in where we could go for therapy,but now my husbands job has a new insurance provider so the entire city healhcare system is open for us. A whole new world of better mayb more understanding specialists.

 

[bookwormde]

Good luck and keep us informed

bookwormde

 

[Nandid]

Thanks evryone for their input before.

After numerous more doctors and therapists. I finally got someone who actually gave a diagnosis and it fit my daughter perfectly.

She has been iagnosed with CAS(Childhood Apraxia of Speech) it is a processing disorder. Anyone interested can read more about it here.

http://speech-language-therapy.com/53-58-CAS-family-info.pdf

She is finally getting the correct therapy and improving in some speech. After this diagnosis the new therapist started immediate with the recommended therapy and already my daughtr has picked up three new words. That doesn't seem like alot, but to us it's a big improvement.

 

[blessedmom4]

Praise God! Thank you for the update. Praying the therapy continues to work. It is amazing what an ACCURATE diagnosis can do to help a problem. I am sorry it took them so long to find one (been there, done that).

 

[tinytreasures]

Thanks evryone for their input before.

After numerous more doctors and therapists. I finally got someone who actually gave a diagnosis and it fit my daughter perfectly.

She has been iagnosed with CAS(Childhood Apraxia of Speech) it is a processing disorder. Anyone interested can read more about it here.

http://speech-language-therapy.com/53-58-CAS-family-info.pdf

She is finally getting the correct therapy and improving in some speech. After this diagnosis the new therapist started immediate with the recommended therapy and already my daughtr has picked up three new words. That doesn't seem like alot, but to us it's a big improvement.

missed this thread till now
that was what I was going to tell you to have her tested for I am so happy she are finally going to get the help you need
Our dd's speech improved so much once we figured out her problem was and changed how we were talking to her. It took the stress off of her so she is more relaxed now