National Fragile-X Awareness Day was July 22nd, and I didn't say anything. But then I took another look at the statistics. And I feel like I need to say something now.
I am usually not at all shy about telling people I am a carrier of the full mutation of Fragile-X. After all, I'm certainly not alone! And my thought is, if you think less of me for my genetic background, then you're not the kind of person I'd want to be chummy with anyway.
Although I have been very angry with Fragile X in the past, I am actually grateful for it now. I have been very blessed. I have some hard decisions to make further on down the road if I decide to have children of my own, but I still would not change anything. I feel like I can identify, in some small way, with the families who will walk through the door of my clinic.
My thoughts are not coming together well tonight...I'm pretty wiped out, and I need to study. But I wanted to be one more voice chiming up about FXS, to maybe reach one more person and tell them that life with FXS is not so bad.
In fact, it is beautiful.
Thursday, July 24, 2008
Tuesday, July 15, 2008
And so what we have learned, applies to our lives today...
I have learned a lot from reading blogs written by Mommas of kids with special needs. I was reflecting on this as I went through my daily list of blogs today, and decided to write up some of what I've learned.
1. Down Syndrome is much more than mental retardation. I never realized all the medical problems that can accompany it.
2. Kids with a trach cannot smell or taste. Little Parker has weak lungs and can only go off of his trach tube for an hour every week. I can't imagine how overwhelming smells and tastes must be for him, and what it would be like to go through life without those senses.
3. Kids with g-tubes can have some major sensory issues once they are healthy enough to eat again. Michelle has posted some fantastic insights and tips about how to prepare kids to start eating via mouth again. I especially like her Eating Jar idea whereby her daughter Jacqui gets rewards for finishing all of her food and trying new foods.
4. I really need to get ahold of some Signing Time DVDs if the clinic at school doesn't have them. They break down walls for lots of kids.
5. As my Fluency professor told us, it really is all about the Benjamens. I have been appalled at the behavior of hospitals towards Parker and Rhett's families, calling and demanding large bills be paid out of pocket at that very moment while refusing to offer them any financial help. Let's think about this: medically fragile child, lots of surgeries, lots of doctor's visits and therapies, Mom staying home to watch after said child...probably not a 6 figure income here. Yet without these surgeries and doctor's visits and therapies, their children would not be alive. My supervisor for my observation hours told me that the most important thing is to provide a service for people who need it. End of story. Money is secondary to being able to communicate and eat and swallow without choking. No one should have to live in silence for want of a co-pay.
6. Always be on the lookout for communication opportunities. Sweet Maizie and her family communicate a lot through Webkinz, giving each other virtual gifts and sending each other messages. I never would've thought of Webkinz as a sort of augmentative communication, but it really works for her, and I enjoy reading about all the ways she finds to express herself.
I am really grateful to all of these families for giving me a glimpse into their lives...it has been the best resource I've found so far, and certainly the most entertaining and fufilling!
1. Down Syndrome is much more than mental retardation. I never realized all the medical problems that can accompany it.
2. Kids with a trach cannot smell or taste. Little Parker has weak lungs and can only go off of his trach tube for an hour every week. I can't imagine how overwhelming smells and tastes must be for him, and what it would be like to go through life without those senses.
3. Kids with g-tubes can have some major sensory issues once they are healthy enough to eat again. Michelle has posted some fantastic insights and tips about how to prepare kids to start eating via mouth again. I especially like her Eating Jar idea whereby her daughter Jacqui gets rewards for finishing all of her food and trying new foods.
4. I really need to get ahold of some Signing Time DVDs if the clinic at school doesn't have them. They break down walls for lots of kids.
5. As my Fluency professor told us, it really is all about the Benjamens. I have been appalled at the behavior of hospitals towards Parker and Rhett's families, calling and demanding large bills be paid out of pocket at that very moment while refusing to offer them any financial help. Let's think about this: medically fragile child, lots of surgeries, lots of doctor's visits and therapies, Mom staying home to watch after said child...probably not a 6 figure income here. Yet without these surgeries and doctor's visits and therapies, their children would not be alive. My supervisor for my observation hours told me that the most important thing is to provide a service for people who need it. End of story. Money is secondary to being able to communicate and eat and swallow without choking. No one should have to live in silence for want of a co-pay.
6. Always be on the lookout for communication opportunities. Sweet Maizie and her family communicate a lot through Webkinz, giving each other virtual gifts and sending each other messages. I never would've thought of Webkinz as a sort of augmentative communication, but it really works for her, and I enjoy reading about all the ways she finds to express herself.
I am really grateful to all of these families for giving me a glimpse into their lives...it has been the best resource I've found so far, and certainly the most entertaining and fufilling!
Wednesday, July 9, 2008
Greg
I swear I thought I updated this thing more recently. Gah. Anyways, I thought I would introduce you to a friend of mine who I hope will be friends with my young clients as well! This little guy is Gregarious, or Greg for short. I made him 2 years ago before I went to Ireland. My good friend Sophie was going to Greece, and I wasn't going to see her all summer. I made us both bears to take with us and photograph as we traveled. I had a lot of fun taking pictures of Greg in Ireland, and now I take him around with me whenever I go places and photograph him. When I started getting into speech-language pathology, I decided that I would bring Greg and his photos into the therapy room with me. I'm going to try him out this fall, if I get my supervisor's blessing. Children could describe Greg in his pictures, what he was doing and how he felt. They could sequence the pictures. They could tell their own Greg stories by looking at the pictures, and I could even make them bears to take on adventures themselves! This particular picture is of Greg in the preschool room in the student clinic. There are all kinds of super-neat toys in there. I hope I get a few preschoolers who won't get overloaded by that room so we can play. :)
Monday, June 16, 2008
The bottom line
As an SLP, I am not going to be qualified to diagnose conditions such as mental retardation (Is there a more politically correct term I should be using? I'm trying to be sensitive, but I honestly don't know.) or autism or Downs Syndrome or anything like that. If an individual has an undiagnosed condition pertaining solely to communication, then I can make a diagnosis, but other than that I can only make suggestions or referrals. For example, if I see a child who is flapping his hands, avoiding eye contact, and having lots of difficulties with expressive communication, I could suggest that the child see a developmental pediatrician or child psychologist. I could not diagnose the child as having autism.
Even so, communication impairment diagnoses can be devastating in and of themselves, and every family reacts so differently. One family may be thrilled to finally have a name for their child's difficulties. Another might want a diagnosis only to get more insurance money. Still another may completely deny that anything is wrong with their child, and another might be very angry at everything in general for a while.
I was thinking today about my professional and personal reactions to these various reactions of families with whom I will work. I do not envy those doctors who have to give the heavy diagnoses. You have to remain professional, and that means distancing yourself to some degree from the emotional impact of the diagnosis you give. Only a trained counselor/psychotherapist can deal with that aspect. Indeed, my Traumatic Brain Injury professor told us to always recommend family counseling with any TBI case we get, no exceptions. TBI can be especially devastating because sometimes the brain loses its capacity for higher functioning and will never regain it; there's just too much damage. Plus, personality changes are a common side-effect of TBI, and if you've known someone for twenty years and all of a sudden they seem like a completely different person, well...that's tough, to say the least! So as an SLP, I am not qualified to get into all of that. I have to keep some distance for my own mental health.
However, completely distancing myself from the family isn't the answer either. I need to be able to sympathize, commiserate, and celebrate with my families. If families think me callous or cold, I will not be a very effective therapist. I need to get to know the individual, what s/he likes and dislikes, favorite movies and TV shows and books, favorite subjects in school, etc. Why would the individual want to have a conversation about soccer if he's never played it in his life but tap-dances for 2 hours every day? It would make much more sense to talk about tap-dancing. (In my personal opinion, it ALWAYS makes sense to talk about tap-dancing. The only thing that makes more sense is actually tap-dancing. But that is just me ;) )
The bottom line is, I need to work out a healthy balance for myself. I need to be involved, but not too involved. This is going to be one of the hardest things for me to learn, and there is only so much help and advice I can get from other people because it is a personal emotional thing for each person. How much should I leave at the door of my clinic? How much should I take home with me every day?
For now, I need to shower and get to work. At least it's easy to leave office work at the door! ;)
Even so, communication impairment diagnoses can be devastating in and of themselves, and every family reacts so differently. One family may be thrilled to finally have a name for their child's difficulties. Another might want a diagnosis only to get more insurance money. Still another may completely deny that anything is wrong with their child, and another might be very angry at everything in general for a while.
I was thinking today about my professional and personal reactions to these various reactions of families with whom I will work. I do not envy those doctors who have to give the heavy diagnoses. You have to remain professional, and that means distancing yourself to some degree from the emotional impact of the diagnosis you give. Only a trained counselor/psychotherapist can deal with that aspect. Indeed, my Traumatic Brain Injury professor told us to always recommend family counseling with any TBI case we get, no exceptions. TBI can be especially devastating because sometimes the brain loses its capacity for higher functioning and will never regain it; there's just too much damage. Plus, personality changes are a common side-effect of TBI, and if you've known someone for twenty years and all of a sudden they seem like a completely different person, well...that's tough, to say the least! So as an SLP, I am not qualified to get into all of that. I have to keep some distance for my own mental health.
However, completely distancing myself from the family isn't the answer either. I need to be able to sympathize, commiserate, and celebrate with my families. If families think me callous or cold, I will not be a very effective therapist. I need to get to know the individual, what s/he likes and dislikes, favorite movies and TV shows and books, favorite subjects in school, etc. Why would the individual want to have a conversation about soccer if he's never played it in his life but tap-dances for 2 hours every day? It would make much more sense to talk about tap-dancing. (In my personal opinion, it ALWAYS makes sense to talk about tap-dancing. The only thing that makes more sense is actually tap-dancing. But that is just me ;) )
The bottom line is, I need to work out a healthy balance for myself. I need to be involved, but not too involved. This is going to be one of the hardest things for me to learn, and there is only so much help and advice I can get from other people because it is a personal emotional thing for each person. How much should I leave at the door of my clinic? How much should I take home with me every day?
For now, I need to shower and get to work. At least it's easy to leave office work at the door! ;)
Wednesday, June 4, 2008
Forgetting why I do this
As I may have mentioned before, I have not started to do actual therapy yet in the course of my education. I begin to have clients this fall, and am closely observed by a qualified SLP as well as videotaped during my sessions. When I talked to other students who had not had clients yet, they said they were terrified. I then feel like kind of a jerk for saying, "I can't wait!" I know that having clients is going to be difficult. When you are a student clinician you have to write out lesson plans for every therapy you do in a specific format, and then write up how the session went in a specific format. It's a lot of extra paperwork. We have to get 375 hours of therapy in, but the preparation and follow-up do not count as therapy hours because we are not actually with a client. Also, many children are unpredictable and inattentive by nature. I heard about a client last summer who would not listen to the student clinician at all. Her supervisor, who has two children and thus has developed a "Mom Voice," had to sit at the door of the therapy room to keep the child from running away.
Despite all of the extra stress and work that comes with clients, I find myself eagerly anticipating them. Why? Because they are the reason I am doing this. They are the reason that I am sitting through classes and making flashcards and reading never-ending chapters in textbooks and memorizing and forgetting the cranial nerves on a regular basis (don't judge, those buggers are slippery...ask any med student). You cannot learn to be an SLP sitting in a classroom, and sometimes when I'm sitting in a classroom I forget this fact and think that the book-learning is the most important part. Then I get depressed and overwhelmed. I cannot wait to be thrown into the fray, to make mistakes and learn from them, to watch children learn and grow. And it is good to remind myself of this when an afternoon of Morphology and Syntax homework and Traumatic Brain Injury studying stretches before me. Thus, I go to shower, and hopefully to conquer! :)
Despite all of the extra stress and work that comes with clients, I find myself eagerly anticipating them. Why? Because they are the reason I am doing this. They are the reason that I am sitting through classes and making flashcards and reading never-ending chapters in textbooks and memorizing and forgetting the cranial nerves on a regular basis (don't judge, those buggers are slippery...ask any med student). You cannot learn to be an SLP sitting in a classroom, and sometimes when I'm sitting in a classroom I forget this fact and think that the book-learning is the most important part. Then I get depressed and overwhelmed. I cannot wait to be thrown into the fray, to make mistakes and learn from them, to watch children learn and grow. And it is good to remind myself of this when an afternoon of Morphology and Syntax homework and Traumatic Brain Injury studying stretches before me. Thus, I go to shower, and hopefully to conquer! :)
Wednesday, May 28, 2008
"Everybody stutters one way or another, so check out my message to you..."
http://www.youtube.com/watch?v=mpHLEm9-0bg
John Paul Larkin (March 13, 1942 — December 3, 1999), better known as Scatman John (sometimes credited as Scatman internationally), was a famous American stuttering jazz musician who created a unique fusion of scat singing and Euro Dance, best known for his 1994 hit "Scatman (Ski Ba Bop Ba Dop Bop)". As he liked to say, this was a process of "turning my biggest problem into my biggest asset." He has sold millions of recordings world-wide and was also named "Best New Artist" in the Echo Awards in both Japan and Germany. He was a recipient of the American Speech-Language-Hearing Association's Annie Glenn Award for outstanding service to the stuttering community and was inducted into the National Stuttering Association Hall of Fame. He died of lung cancer at his home in Los Angeles, California at the age of 57.
(taken from http://en.wikipedia.org/wiki/Scatman_john)
I love the Scatman. As I get ready for Fluency class on Friday and scramble around doing Traumatic Brain Injury homework, Scatman John is running on loop through my head. I like to try to sing the scat parts of his songs along with him, and find myself utterly unable to keep up. Sometimes, I think the people with so-called "impairments" teach and help me more than I shall ever be able to teach and help them. They are truly gifts from God.
John Paul Larkin (March 13, 1942 — December 3, 1999), better known as Scatman John (sometimes credited as Scatman internationally), was a famous American stuttering jazz musician who created a unique fusion of scat singing and Euro Dance, best known for his 1994 hit "Scatman (Ski Ba Bop Ba Dop Bop)". As he liked to say, this was a process of "turning my biggest problem into my biggest asset." He has sold millions of recordings world-wide and was also named "Best New Artist" in the Echo Awards in both Japan and Germany. He was a recipient of the American Speech-Language-Hearing Association's Annie Glenn Award for outstanding service to the stuttering community and was inducted into the National Stuttering Association Hall of Fame. He died of lung cancer at his home in Los Angeles, California at the age of 57.
(taken from http://en.wikipedia.org/wiki/Scatman_john)
I love the Scatman. As I get ready for Fluency class on Friday and scramble around doing Traumatic Brain Injury homework, Scatman John is running on loop through my head. I like to try to sing the scat parts of his songs along with him, and find myself utterly unable to keep up. Sometimes, I think the people with so-called "impairments" teach and help me more than I shall ever be able to teach and help them. They are truly gifts from God.
Wednesday, May 21, 2008
Oh, the irony...
The irony of the fact that I am sick with jealousy of three friends who are in Italy right now just struck me. Read this if you don't get it.
And yes, I know I'm not a mom. I'm Holland itself. I'm a sibling to Holland. My mother teaches in Holland. And I'm spending all of my time, energy, and money preparing to teach Holland how to communicate. I like to think that I am a bit familiar with some aspects of Holland by now. When it comes down to it, I wouldn't have it any other way.
But I am still jealous of my friends who can afford to cavort around Italy for 10 days.
And yes, I know I'm not a mom. I'm Holland itself. I'm a sibling to Holland. My mother teaches in Holland. And I'm spending all of my time, energy, and money preparing to teach Holland how to communicate. I like to think that I am a bit familiar with some aspects of Holland by now. When it comes down to it, I wouldn't have it any other way.
But I am still jealous of my friends who can afford to cavort around Italy for 10 days.
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