Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Very nice Ann. Kim ---------- > >To: CHARGE >Subject: Re: Re: Student with Charge >Date: Mon, Jun 3, 2002, 4:13 PM > > Hi: I am catching up on this great discussion-I am a Deafbind and Special > Education specialist teacher who > has worked hands with individuals who are deafblind for 15 years, and the > last 3 years with blind/LD, > blind/mild cognitive delay. (Residential Provincial school similar to > Perkins in the US, but not as grand) > We still learn everyday with each new kid. I caught a couple things. It > will be important for you to find > out the exact visual diagnosis. Usually with CHARGE, the vision problem is > coloboma of the retina which > creates a field visual loss. This would explain why the child may be able > to see the raisin across the room > and yet on his back function as blind. The top half of the visual field is > usually gone, and on their back > they would function as blind to the environment, except the directed input > in the right place from their > stimming fingers or toy. I agree that CHARGE children who are more > self-absorbed and are more inwardly > directed may also have optic nerve coloboma--the image is there/its > gone/there/its gone. The brain cannot > attatch the meaning to what is seen. It sounds like this is an > individual who is absorbed with self-stim. > and probably startles and or cannot integrate external input, and would > rather ignore it --anything from > without (audiorty info. tactual info. hearing aides, glasses, etc) The > fact that he is using " devices " of > his own design such as his own spit, etc. is a way for the brain to stay > healthy and create and keep brain > connections--this shows that he is potentially quite bright, NOT retarded. > I bet he also has some unique > things he does with the spit. Sometimes we make the error of starting too > far up on the communication > ladder--the PECS thing is really not the start, nor are the concrete cues. > Signing is not the start. When I > do my communication workshops, I talk about the " Resonance " stage and I > usually hear the " agh ha! " This is > the cause/effect stage--before the child can understand representation, > (such as cues or pictures) he has > have a relationship with the environment. The concept of " other " in the > communication exchange has not > developed--he may be totally egocentric. He has to first cause effects on > the environment, and realize that > by his actions something in the environment will change. The " INTERVENOR " > (Canadian spelling) is needed (1 > +1) to interact, starting from behind the child on the floor, where he has > to lean on your back. From your > play mov't together, you gradually make a change, then introduce a > gesture to refer to that change. > (example rock, rock rock STOP) When you see that the child is picking up on > your pattern of mov't, watch for > glinches of his anticipation of the change, ...gradually he begins to > initiate the change. Other cause and > effect play activities with the INTERVENOR are needed, so that he soon > realizes that by his actions, an > effect will be created. The " other " (you) then reacts to his change, and > thereby is the start of a > communication system. Also, in the McINNIS theory, the first INTERACTION > stage for deafblind is " the child > will resist " . The next stage is " the child will tolerate passively " . It > is important to go a little beyond > the resistance (example with the hearing aides and glasses) for short > periods during an enjoyable pleasure > play interaction so that the child can slowly building on learning about > the " external " things in this world > of " simply self " . It's a scarry place to begin to hear sounds or see > images you don't completely > understand. The " INTERVENOR " makes this a safe place for the child, to > begin to explore together some of > these things that make sound or colours, patterns, textures, etc. together. > I would suggest the book " Deaf > Blind Infants and Children " by McInnis and Treffrey, University of Toronto > Press. I could send some clips > from my book " Calendars: Reactive Interactive Communication " by e-mail if > you wish. > ANN GLOYN, B.Ph.Ed., B.A., B.Ed., Deafblind and Spec. Ed. Specialist > > speedturtle76 wrote: > >> I realize that my student has struggled with communication, > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Before I respond to this email, I'd first like to say to all who write here that I have been silently reading, listening to all that has been transpiring and want to thank you for sharing so much. I've been rather passive in part secondary to my not checking my email as often as I should! To reidentify myself, I am a speech-language pathologist that is working with a 2 y.o. fellow suspected of CHARGE syndrome. Most of the information I get here I relay back to mom in hopes that it might help. To the main point of my response: In re: to this student...WOW! Mom sounds really interesting. I think depending on her personality would really be what determins how I'd approach this (i.e. does she take suggestions well or not etc.). 1. Ears - Ears don't bleed! They bleed if something is wrong, infected etc. If that child has a sig. hearing loss already, you can just about bank on there being next to know hearing left if this continues and is not addressed. Anything is possible- including equilibrium problems etc. if damage is done to the inner ear. Wow! 2. Reflux - What exactly are you seeing that indicates reflux? Is mom aware of this? Are there choking episodes, regurgitation of food etc.? Does mom know that he could potentially -die- from this, get pneumonia etc.? 3. Self Stim. - Sensory input is required, but sometimes when it is socially unacceptable or harmful there alternatives. For example - with children that teeth grind we sometimes provide them with something safe and oral to chew on in order to stop the noise but more importantly to stop them from ending up with nubs! Anyway, is there anyone who is in good with mom that you can get to address these issues? Someone that mom feels comfortable with, feels is a good resource, advocate for her and her child? That would be the first thing I'd look into. I think it would be important to let mom know the seriousness of all issues involved and possible consequences. Good luck to you and to all! Your sharing is much appreciated! - SLP __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Before I respond to this email, I'd first like to say to all who write here that I have been silently reading, listening to all that has been transpiring and want to thank you for sharing so much. I've been rather passive in part secondary to my not checking my email as often as I should! To reidentify myself, I am a speech-language pathologist that is working with a 2 y.o. fellow suspected of CHARGE syndrome. Most of the information I get here I relay back to mom in hopes that it might help. To the main point of my response: In re: to this student...WOW! Mom sounds really interesting. I think depending on her personality would really be what determins how I'd approach this (i.e. does she take suggestions well or not etc.). 1. Ears - Ears don't bleed! They bleed if something is wrong, infected etc. If that child has a sig. hearing loss already, you can just about bank on there being next to know hearing left if this continues and is not addressed. Anything is possible- including equilibrium problems etc. if damage is done to the inner ear. Wow! 2. Reflux - What exactly are you seeing that indicates reflux? Is mom aware of this? Are there choking episodes, regurgitation of food etc.? Does mom know that he could potentially -die- from this, get pneumonia etc.? 3. Self Stim. - Sensory input is required, but sometimes when it is socially unacceptable or harmful there alternatives. For example - with children that teeth grind we sometimes provide them with something safe and oral to chew on in order to stop the noise but more importantly to stop them from ending up with nubs! Anyway, is there anyone who is in good with mom that you can get to address these issues? Someone that mom feels comfortable with, feels is a good resource, advocate for her and her child? That would be the first thing I'd look into. I think it would be important to let mom know the seriousness of all issues involved and possible consequences. Good luck to you and to all! Your sharing is much appreciated! - SLP __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 All I can say about this is one big fat word...NEGLECT! That is just my opinion!! My heart aches for this little boy, he has such tring times and many more to come and without the support of parents it is almost impossible for anybody let alone a child with needs! It angers me to the point I cann't even think! To Many Dr's????????? in my opinion there are not enough Dr's out there now that know about CHARGE, there need to be more and if the mother can't take from her precious moments of the day to see the Dr's that her son so desperately needs that tells me right there what kind of mother she is. Where would any of our children be without their long lists of Dr's? I know for a fact that Katelyn would not be here at all and she is high functional charge. I know that this does not help your matters any and I can't even think of what to tell you to do with his mother other than knocking some sense into her which should be done anyway! Talking to somebody like that...I couldn't! It is all about the children!!!!!!!!!!! The children come first, not your time, money, looks, personal things, nothing should come before your child! Then again, like I said this is just me venting my opinion! Roxanne mother to Katelyn 5(CHaRgEr), Kristopher 3 and wife to Don > I have a student with CHARGE Syndrome. I have researched the > syndrome and I have made progress with him this year. He suffers > from severe mental retardation, lowered of course by sensory > impairments. He has caused me a great deal of joy and frustration. I > have struggled to deal with some of his behaviors. He plays with his > spit, toilet water, and likes to spit out food or water, he also > vibrates his lips or spits frequently. The behaviors that involve > bodily fluids are of course a risk to the other students and I have > not found a good intervention. He is deaf (refuses aides and tests > indicate a severe to profound loss) and is very much in his own > world. He self stimulates constantly but self stimulating of course > is necessary for him to get the sensory input. > > The other problem I have is that his mother does not seem to realize > that his syndrome comes with medical problems. He bleeds from the > ears at least 3 times a month, refulxes, has fluid in the ears 4 or 5 > times a week, and has difficulty chewing. He has not seen an ENT, > opthamologist, or dentist in quite awhile. His mother complains that > he has too many doctors that she would need to take him to. Does > anyone have a doctor that treats the whole syndrome? Any suggestions > as to how I might politely fill Mom in on the complications that > could go along with CHARGE? In all reality behavior meds would > benefit him however we are not going to suggest it because it would > require monitoring. > > Thankyou- noel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 I agree with you 100% that the children come first. That was, is and always will be true. No question about it. I also understand how there are not enough doctors... But instead of judging or making assumptions about this person we might want to find out what is happening here. Think about it, this woman is divorced and that right there is something MORE she has to deal with besides having a child with CHARGE. If the statement was her son has too many appointments already that means she IS taking him to doctors. We also don't know what the pediatrician is telling her. Haven't we all had doctors we trusted only to find out they were fools? Even if he is a good one, the pediatrician might be giving her advice on dealing with the infections and he is just not sharing this with the school. Honestly, sometimes when Patty gets infections she is prescribed only drops for it. It isn't always a bacterial infection happening so antibiotics do not work. As a matter of fact she has been on so many some no longer work. I work in special Ed and have seen some very irritable parents. That really makes me mad because I have tired so hard to work as a team and I fell they wreck it for the rest of us. But I feel with the parents it is similar to the children. Once you understand the situation you can understand the behavior and then work on it to improve what is going on. Most probably this woman might just be totally, absolutely overwhelmed. Unless you have lived it you really can't comprehend it. I know I had points in my life where I felt I was overwhelmed, especially in the beginning and Patty is called " high functioning. " This child sounds as if his behaviors are at a point where he needs constant attention. Just making dinner might be hard for her. Or putting him to bed, or changing his cloths, or bathing him... Then add to that money or work problems. We all know how that is. I have a wonderful support system and yet found great help in therapy at different times. This person most likely would benefit from that, we all would, but it costs money and time which there are often little of either. I also found it best not to have different camps. By that I mean school personnel against family. That just doesn't work. Somehow things need to be done to focus on working together to benefit the child. I work in Special Ed but realize no matter how much we love our children we are ONLY there for a short amount of time. It is the parents who will be spending a lifetime with them. Remembering that is important. Getting this child medical help is of utmost importance. But so is having school personnel understand the unique characteristics of CHARGE with the combination of sensory needs, medical needs, educational needs ... and to help the child communicate these. It's communication which is of the utmost importance. And communication means ANY WAY appropriate. I read your response and again Ann Golyn, you are wonderful! That should be printed in a manual somewhere! Before we go further I have to add there are many people in our educational system who have and continue to disagree with what I have done with Patty. But, it is the educators who have worked WITH me and WITH Patty who have made the most remarkable effect on all our lives. So with these parents, let go and find some mutual ground to best help the child. With all that said. If there are medical issues that are not being addressed which could hurt the child then not doing something about it is also wrong. If there is danger to the child action must be taken. If we know of something harmful to a child and do nothing aren't we then neglectful also? For all of you educators here, no matter your specialty, you are wonderful for caring and trying to learn more. It is you who will make the difference. Bonnie, Mom to Kris 19, Patty CHARGE 17 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Deaf Blind Infants and Children is an excellent suggestion! When was little, before anyone had used the phrase dual sensory impaired much less deafblind, I literally stumbled on the book. It hit home as nothing else ever has. Every parent - especially those in denial or without good supports - should own it. I don't know why I hadn't thought of it! Martha Quote Link to comment Share on other sites More sharing options...
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