Wednesday, September 23, 2009

Yes we have tried it

One of the most frustrating and most hurtful things happen when you express your frustration with your non verbal child. Though I am sure that even parents with Typical kids feel the same type of frustration I can't help but wonder NOR have my feelings hurt that people would really think that we "didn't think of that" before!

When someone meets us for the first time Ty will wave at them. No words just wave. So cute that people will smile and say Hi and ask how old he is. I smile and say he is 4. And they will ask Tyler what his name is. I answer for him and say his name is Tyler and they proced to ask him questions. The hard part is then kindly letting them know he can't talk. While I am use to it by now people get "the look" of pity across their face. Which leads me to feel the need to justify why he isn't talking etc, which them they feel the need to explain the history.

So instead I am going to tell YOU all the same things that we get asked along with the well intentions of others.

1. Have you tried sign language? Why yes we sure have. We decided in the very beginning and it was also suggested by several therapist that we encourage words and not sign. Which we did. Then as we realized that words and sounds weren't' coming we switch to using sign and another system. While we have various words in sign ( all done, more, food, cookie, flower, pull/pool, water, computer, book, look) those are not all done correctly, meaning his sign for cookie is not the universal sign or ASL sign for cookie because his hands don't move correctly.

Explaining further Tyler cannon bend his arms and touch his shoulders in any way shape or form. He cannot rotate his hands and so holding a pencil, crayon etc takes a lot of effort hand over hand etc to get it to move right. So we have used modified sign language.

Modified sign language is not recognized in a standardized testing type of situation, meaning when we go into a speech and language test and they say say flower if it is not the ASL sign for flower he is marked down as not knowing it. When he can point to flower, tries to smell flowers, will ask for flower he, according to all standardized testing doesn't know flower. Therefore modified sign language is good for mom bad for the rest of the world who STILL doesn't know what he means. Mom is left as the translator. Because of his rotation problems he will not ever be able to fully communicate in sign. We add signs and we add modification signs because we need communication in the house but in order for YOU to communicate you will need to learn Tyler language and take the time ti understand HIM. He already understands you he just cant' express it!

2. Have you tried getting pictures and having him use the pictures? BY GEORGE!! we sure did. Its called the PECS system and we have been using a type of PEC system for some time. as he learns the PEC picture we teach a modified sign to it and in a day or 2 that picture is no longer needed. BUT his need to communicate happens to go out and around the pictures we have for the PEC system so we allow others ways of exchanging. For example. Instead of taking a Picture of Barney and a picture of Little EInsteins we have made a book of his movies. He can go through the movie and pick what one he wants. He can pick what book he wants to read. He doesn't need a picture to say book because he can sign BOOK. After a week with certain pictures he tends to find modified signs/gestures and would rather use them than the pictures.

PECS is going to be reintroduced in the form of a schedule on Mondays when he has the choice to do anything he wants with mom but he has to chose and express his choice. But again that isn't going to change that Me his mom is the interpreter.

3. Have you tried signing time videos? Why yes we sure did and he didn't like signing time. He can't even get through the introductions before he is changing the movies. We have gotten him to watch baby Einsteins and will sign what they teach of there but he doesn't like Rachel's signing time we tried..... more then once.

4. He will talk when he is ready? Really? cause he isn't and he is ready to talk. If he wasn't ready to talk he wouldn't be so frustrate that I guessed wrong. At this point there is something not working somewhere that is not allowing him to talk. WE don't now what it is.

5. Have you checked his hearing As a matter of fact we have. He has always passed hearing tests except at preschool where he was not about to allow them to put something in his ear. So we were sent to Dr. fugi a world famous doc that specialized in hearing and communication. Ty is perfectly healthy and Dr. Fugi see no medical reason why Tyler cannot talk.

6. Has he had a lot of ear infections? no Tyler has had ONE ear infection while we had the swine flu if 4 years. Other wise he has NEVER had one. An ear infection was misdiagnosed when it was suppose to be shunt failure. So auditory functions on him are in top notch condition

Those are the main ones we get.

Yes we let him pick to the best of our ability, yes we walk away when he throws a fit but the reason he is throwing a fit is because he can't tell me what he wants. He is frustrated.

When people say oh you probably didn't try this and we did, well it makes me feel bad. Like it didn't dawn on me something as simple as watching a sign language video would make him talk that I just wouldn't do it. I have done it. I have tried it several times. but he doesn't like it.

So yes... my non verbal 4 year old is STILL non verbal. And YES we have tried a WHOLE bunch of things and yes we will try a WHOLE bunch more......

Any other questions you ant to ask about what we have tried? Please feel free to leave a comment and I can see if we tried it or not.


Josephine said...

People can be so frustrating when they try to give you advise on something they know NOTHING about! I'm sorry, this must be so frustrating for all of you. I hope you find something that works.

Amelia said...

My personal favorite are the third and fourth hand stories about someone's aunt's cousin's hairdresser's friend's son who didn't talk until they were x years old, and then they just started talking in full sentences. I can so relate Nancy!

Grandma Labrum said...

Sorry. I'll never make a comment again.