Disabilities and Understanding Them

So I read your post and it hits home for me. My son was born HH. He had hearing aids at 4 months old. We discovered at 3 yr old that he had a progressive HL and he was diagnosed as profoundly deaf in both ears. He is now a bilateral cochlear implant recipient.
My DH and I went through VERY frustrating times and all I can say is you have to draw the words and signs out of them. Learn his limits of frustration, not when he whines, but his true limits and push him to produce communication. I strongly urge you and your family to embrace ASL. Your child can and will develop a language base from that and if there is potential for him to talk then that will come eventually because you do. I wish I had someone early on tell our family that. We held on so tight that we wanted our son to talk that it was our main focus and that put our sons communication skills in jepordy all for (in my opinion now) selfish reasons. If he hasn't had a hearing test in a while, maybe you should contact your audiologist to see if it has worsened. Also see if they know any families in your area that may have similar situations. Networking is awesome when your in a situation like ours. Sometimes it is nice to have a ear, and sometimes when your the more seasoned/ educated person you can give back.
Remember too, I don't want to sound nasty I mean this from the heart! Your child is the one who is struggling and sometimes it really tests our patients but, you need to put your feelings aside and try to focus on his. If need be, walk away for a minute to gain composure. With a struggle in communication comes tantrums. With a HH or deaf child it takes more repetitive words and signs. Give it time, make some games out of it instead of just when he wants or needs something. Be silly with it.

My son at 2 would kick, bite, hit me and scream. This was because he had NO way to communicate. He pointed a lot and used a few words. That was it. He was living in this busy world that he didn't understand. At bedtime that was the worst. It was a battle and I let him win. They need LOTS of love and routines. One thing I did was I had pictures that he would use (because the are very visual learners). I also posted ASL signs through out the house to not only remind me to use them but for my son to see. It wasn't the prettiest decor but, it helped my husband and I. I also found a website called lifeprint.com and I basically did a free online class. ASLPro.com is great as well. Keep in mind that there are variations of signs just like English so don't get frustrated. Good luck! I am sure everything will smooth out eventually just like it did for our family and now our son at 5, attends a deaf school with spoken English access and is just about at age level with ASL and English.

Hey D.,

First, just ignore junk like FDR was disabled, REALY? Holy cow, spoken like a person who does not have these challenges in their life and finds our children to be a pain in the you know what, thinks that we are bad parents, and that becuase they could make perfect little cookie cutters from their typical kid, that all of us get it so easy. So helpfu, eh?

His third birthday can't come soon enough! He needs some intensive intervention, and it is a long process, and you will need help with it. You are doing all you can right now, and once he is getting more on a daily basis, from someone else (he is mad at you...not fair, but true! Mom is supposed to know!) it will get better. Once he starts PPCD, it will get better. You are held to a higher standard, because, you are Mom. Been there, done that, and they do "forgive" you for not being able to figure it out. He is not stuborn, he has just not yet put it together, and once he is out of the daily routine of tying to learn almost all of it from you, and he puts it all toghter, it will get better.

For now, you might try to put your own picture board together, if the speech therapist says it it OK. I would find a polariod camera, and take pictures of his favorites, a picture of the sign for it, and put it in a flip album that he can use when he gets upset. It may help to put the pictures all around, like in the bathroom for all the things he needs to be able to tell you for personal care, as learning these things will be difficult too. I know that mine was really angry when I used the sign for "no" which is crazy, because she could hear, so I should have just said it, but I noticed that it made her mad, and she would stop looking at me to learn any more or try any herself once she was angry. He is very frustrated, and I bet even FDR would lay down on the floor in a little puddle if he wanted something and could not tell you. At some point, they just want to say more than, I want such and such, and they know that they can't. It will get better.

Luv ya! Hugs...

M.

PS:I would not ask for PECS until after the IEP team has determined what his mode of communication will be. If you want to have him learn SEE, or ASL, then you do not want them to be able to put down PECS instead. You want him to be immersed in he mode ASAP! MR
PSS: For kids who qualify under Hearing impairment for IDEA, they have something very specific, which is to be determined prrior to almost everything else, which is his Communication Mode. For an HI IEP, they may have Assistive technology, but ASL or SEE, Speech, lip reading, or a PECS system is not AT for a child who is HI, it is communication mode, which is a very important distrinction. Your son is entitled to have his communication mode, to be instructed in how to use the communication mode profeciently, and then to be taught using it. AT is there to provide children access to educational services and life skills. Some kids, like kids who have thier IEP's under the AU category for instance, may have a PECS system that does fall under the category of AT, but that is very different. You want what ever you use for Comunication Mode to be held to the higher standards that are required under HI than any form of AT would be under an IEP. What a bunch of alphebet soup, eh? It is an important distinction. Having worked in Texas, if you go in to your first IEP for PPCD not understanding the difference, and let the school give you the itty bity AT services they usually do and depend on that to provide him a communication mode, you will be very sad in a few years. He is entitled to both a Communication Mode and AT, but they are resoponsbile for making him proficient in his communication mode...not so with AT. MR.

D., I have seen you on here a number of times before but I can't remember how old your son is. My impression is that he is still just a toddler. If so, he is still very young and just doesn't have enough expressive language under his belt yet to help him.

My son is now 7 but has high functioning autism -- which basically means he has expressive language and social delays also, among other things. When he was younger it was very difficult to dicipher what he needed/wanted because he couldn't tell me and he did whine (still does). What helped me was getting down to eye level with him and being very, very patient. Just listening to him, telling him that I couldn't understand him because he was whining, and just staying there and waiting to listen to his response. Eventually, after so much drama, he would manage to get out something like "hungry" or "tired". It took a lot of patience and waiting for him to say the word that would clue me in to what was going on.

I don't know if this will work for you but, there is this thing called "Picture Exchange System" or "PECS" for short, that they use for children with autism, that helps them to communicate when they are still non-verbal and to help facilitate the development of language. If you were to cut out pictures of things of all of the things that you think would symbolize what he wants or needs (e.g., a picture of a kid napping, a picture of goldfish crackers, a pictures of a swing set), and glue them on to index card to make them a little bit more sturdy, maybe you can teach him to hand you a particular card so that he can communicate a particular need to you. This may not cure his tendency to whine but it may help decrease it a bit.

If you have any questions, please feel free to IM me and I will answer your question the best I can. Otherwise, I hope this helps you a bit.

P.S., when you finally get hooked up with a speech therapist, he/she should know about the PECS system and maybe can help you fine tune it or segue it to some more functional form of communication.

Hi D.
I also was going to suggest PECS so I completely agree with Laurie below so I will not repeat too much.
You can download Pecs symbols online for free or else just take lots of pictures of everything in his daily routine.
Problems with communicating is the number one cause of "challenging behaviour" so try to support him as much as you can and make use of all the professional advise out there.
Best of luck
B.

Martha is exactly correct- contact your school district and request (in writing) a referral to the preschool special education committee and comprehensive evaluation of his skills adn go from there!

Good luck (and ALL assistive technology is a process... in the end it is very helpful, but you will be jumping through hoops for many years to access it)

Maybe make him a PECS book, or board? You can actually make your own, print some pics off the internet, cut them out (some people will laminate them so they don't wear out) use some velcro to stick them on a board, or he can carry them around in a puch with a belt clip.....ask his OT about it, it is a VERY useful system....
You cam PM with with questions, I have a little experience with toddlers and preschoolers using PECS.

:)
(you're the BEST D.!)

I highly recommend picture communication cards. I made my own by taking pictures of all of the things that I thought my son would want. The actual cards were created in Word. I made a custom label that was 2" x 2", inserted one picture (I cropped out as much as I could), and typed one word to describe what the card was for. Then I printed, cut them apart, and laminated (so I wouldn't have to make them again). To teach him how to use them, you really need a second person. Start with a REALLY preferred food. Sit in front of him, holding the food out of reach. Have a second person put the card in his hand and thrust his elbow forward from behind. When the card comes your way, say the one word on the card and immediately reward with a bite of the preferred food. Do this several times, for several bites. Once he gets the hang of it, start making cards for toys, food, activities, places, feelings, etc. It is important that they only have one word (or maybe 2 words), and that you say the word and reward with the item. Once my son understood that he could use these cards to communicate his wants and needs, his and my frustration decreased almost immediately.
I had a set of cards for my purse, in my car, at my mother's house, and at home. I used a "pocket chart" on the wall at home. He could just go over to the chart and look for what he needed. The good thing about the cards is that all caregivers know what he wants because they can see the picture.
Good luck.

Flash cards. Excuse me if that has already been suggested-I didn't read all the responses-but that is what came to mind right off the bat. Draw pictures, take pictures, cut pictures out of magazines-stick them on index cards. Cover them with clear contact paper if you don't have a laminator handy. Then he can hand you a picture of what he wants. Or ask him to show you. Take him into the kitchen. Stand in front of the pantry. Stand in front of the fridge. No point in both of you getting so frustrated.
Sometimes you have to think outside the box. What is he good at? What does he like? Try to use those ways to communicate. Communication is not just words. Does he have play food? Maybe he could show you the play version of what he needs?
And he needs outside help, too, I'm sure. The schools help tremendously-have you contacted them? Not sure of his age so maybe he is still too young. But you know what? Even with a perfectly "normal" kid (as if something like that exists-everyone has disabilities-if not all the time, at some point in time) there will be times where they can't communicate. I can remember my toddlers repeating and repeating things with me saying "what?" "I don't understand" "can you show me" and finally just using distraction to move on to something else.
My daughter is dyslexic, spelling is sooo hard for her. We used to do spelling words outside in chalk huge on the driveway. It was fun-she had to write them out, it was more visual than just repeating to me or writing on paper. It was an alternative way of doing something that normally she would find mind numbingly difficult.
Good luck.

I am a special ed. teacher and just sat through two days of what your son needs. It is called PECS (Picture Exchange Communication System). It is where they have a book with a strap that they carry and they show a picture for what they want. It is great and widely used for children with limited speech. So helps them communicate.
Your child qualifies for Speech and Sp. Ed services. Contact your school district and do whatever you have to do to receive services and tell them that you want him and yourself trained in PECS.

can i answer this one? a disability is just that, a disability, not an excuse to whine, ok, so you get to whine.. a little. plenty of people go through their entire lives disabled, FDR couldnt walk at all, but without him , we would be celebrating Hitlers birthday, or having to learn japanese. how old is your son ?does he know how to sign yet ? or lip read ? dont allow him to whine, because it will continue and he wont learn how to communicate with other people .make him get what wants out of the kitchen himself, that way you take away the excuse that he uses to whine to begin with.being disabled isnt a cakewalk but, those who cannot do, but try anyway, are better off then those who can do, but will not.
K. h."spoken like someone who isnt disabled"., oh, REALLY. and just who deleted the reality button in your life ??didnt your momma tell you that if you cant say anything nice, dont say anything at all.

The pictures are a great idea. If your son is used to whining, it will take some reteaching on your part for him to use them. Be sure to respond to the pictures but not to the whining. You will need to be consistent. Once he sees that you will respond positively to the pictures, he will get it. But if he gets lazy or frustrated, he might resort to the whining. But like any child, no matter what, do not respond positively to whining. Ever. Not a reaction of frustration, nothing. Just do not respond. Practice the behavior of not responding. See what it looks like in your head. That is what he gets. Almost as if you are hearing impaired.