starting early with speech exercises

6/2/11  Speech exercises to aid in lip closure, liquid control (swallowing and not aspirating) , muscle strengthening, chewing, co-ordination of suck, swallow and breath.  We started our Beckman Oral exercises with the guidance and direction of a speech and language pathologist who specialized in pediatric patients.  We started when Jewel was around two years old and this is already considered very late. One should start as soon as one can.  It would have helped to have the Beckman Oral exercises to strengthen Jewel's nursing abilities.  We were told that Jewel would never nurse or eat oraly since she was intubated for 50 days and this would cause an aversion for anything in her mouth.  At this point in time she was being fed through a NG tube. (A nasogastric tube is used for feeding ) I started nursing Jewel in the Neonatal unit when we were getting closer to leave.  One of the nurses helped me with showing me how to stimmilate the cheeks for better lip closure and sucking.  It was just broad brushing on Jewels checks sweeping from bellow the cheek bone towards the corner of her lip, this stimulated sucking.  Placing finger under chin helped encouraged better closure.  This was our first taste of any sort of muscle stimulation to help with feeding.  A couple of years at home and still nursing we got a speech and language pathologist who came to assist and asses her needs.  She would make very little sound during these years, even her cries were very soft and still are compared to children her age.  I believe that the nursing aided to avoid drooling and better saliva control.  The first thing we did with the therapist was work to help Jewel with controlling and swallowing a drop of water, no exaggeration. She educated us on the dangers of chocking and aspirating, if the food or water got into the lungs what would happen.  All of us including Raven and Makena have always taken first aid and CPR classes.  We became more aware of Jewel's lack of body and neck control and how important correct and optimal positioning is for breathing, eating and speaking.  We noticed from the onset her lack of strength and posture in her torso and how wet her breathing sounded.  We opted not to do a swallow study early on due to Jewel's extreme fear and stress of people in white coats, people with gloves, hospitals and the fact that barium dye would be polluting her body.  Under stress Jewel would vomit.  The first oral motor exercises I did was washing my hands very well, making sure my nails were cut very short and I would put my finger inside her mouth between the gum and lip, starting where the front would be and doing a slow clock wise sweep.  Then taking my finger out and repeating this at the top again and doing a anti-clock wise sweep.  Eventually I would use a NUK brush for this and you can google this to purchase one or read up on it.  I would brush the inside of her cheeks with this.  I would do these exercises before a meal to stimulate the mouth muscles.  The early exercises were made up of upper lip stretching, side to side upper lip stretching, lower lip stretching and side to side lower lip stretching, lower posterior cheek stretching, ... and a few others.  You can look these up on line and I did each one three times only.  I did these on Jewel before meals for years.  The speech and language pathologist always starts the sessions with Beckman oral exercises to wake up, stimulate, stretch and strengthen the mouth.  She would always do some specifically for the letter "O" or give verbal directions, telling Jewel to put the tip of her tongue behind her front teeth for the letter "L".  Then there are the letters with whispers (P) and those with sounds (B).  She would draw the letter on the dry erase board and there are many games that she would bring and event for them to play.  She would convert board games with a fishing pole and paper clips.  Even though it is difficult for Jewel to hold on to anything with control we did not let her limits dictate.  Beth who was working with Jewel the longest would write short stories with Jewel almost every session.  The first solid food Jewel ate was pizza with her Da and the therapist almost fainted.  We would chew the food first and then transfer it into her mouth for her to gum, chew and eat.  Water has always been the most difficult for her to control.  She is not meant to drink out of a straw but Jewel drinks water out of a bendy straw and this works for her.  We are always stabilizing her head to help her.  The early years were checkered with and with out the speech pathologist as we are now with out one again.  We have used straws with Jewel to encourage her to blow bubbles into a cup of water and she absolutely loves doing this.  Anything fun and messy Jewel is game for, and this is good because then she doesn't realize that she is working.  It is harder for her to blow bubbles with the bubble wand.  We still use the NUK brush and a yellow chew toy that looks like a letter T and this helps with co-ordinated counted chewing.  Makena has done music with the recorder  and harmonica with Jewel over the years, to encourage lip closure and breath control with musical results.  But we never stop the exercises for the gains have taken time to show them self.  The first language arts lessons were all done with verbal direction from the therapist and eye gazes from Jewel as her answer.  She would attempt to look or smile at the correct object or as she heard the right answer.  Her speech has taken years to come and it still needs work for clarity.  But at least now she has her voice even if it is only a few words that make up a phrase.  She has to co-ordinate thinking about what she wants to say, take a breath in, get proper support from her physical posture, then getting the words out, so much planing and preparation that we take for granted.   She reminds me that it is "hard".  During the recent years the pathologist has come while I am at work and Raven will help support Jewel's neck and head for optimal positioning.  She will help the therapist and do the homework with Jewel.  I hope Raven will post on the specifics of what she has been doing with Jeweliana.  Hope this helps give an idea of what we do with the speech and language pathologist.  It is on going work but well worth it because it helps with eating, chewing, controlling liquids, swallowing, blowing, co-ordination of the mouth, and speaking. It helps that we school Jewel at home so we can observe and carry out the work during the week.   For best results one has to be consistent.  If we give up then she looses.   Once again "it is the boring repetitive sharpening of your skills that will ultimately enable us to reach our goals"- on the band room wall at Baldwin high school.