Children with 7q11.23 Duplication usually struggle with speech and acquiring verbal vocabulary. Many children benefit from supplementing their vocabulary with sign language or by using of a speech generating device - such as a DynaVox or ipad speech application. We recently came across an application that may benefit families.
The application is called, Speak for Yourself. This overview may give you some idea if this might work for your child.
Duplication Cares is committed to supporting families with children diagnosed with 7q11.23 Duplication Syndrome, as well as being dedicated to raising awareness in the medical community about the existence and treatment of this disorder.
Sunday, January 15, 2012
Wednesday, December 21, 2011
New Research Information
The following research data was recently released.
http://louisville.edu/psychology/mervis/research/Velleman%20-%20%20Mervis%20ASHA%20Perspectives%20Dup7%202011.pdf
We are grateful to Dr. Carolyn Mervis and Dr. Shelley Velleman, for their tireless work and dedication to individuals and families impacted by 7q11.23 Duplication.
For more information or to participate in the ongoing research, please contact Dr. Carolyn Mervis. Information can be found here: http://louisville.edu/psychology/mervis/research/dup.html
http://louisville.edu/psychology/mervis/research/Velleman%20-%20%20Mervis%20ASHA%20Perspectives%20Dup7%202011.pdf
We are grateful to Dr. Carolyn Mervis and Dr. Shelley Velleman, for their tireless work and dedication to individuals and families impacted by 7q11.23 Duplication.
For more information or to participate in the ongoing research, please contact Dr. Carolyn Mervis. Information can be found here: http://louisville.edu/psychology/mervis/research/dup.html
Friday, November 18, 2011
Lego Social Skills...
Many children with 7q11.23 Duplication struggle with social skills, initiating and maintaining social conversations, and developing friendships among peers their own age.
I came across this short video and thought it might be an idea that would be helpful to families. Perhaps it could be adapted to fit your child and their needs and interests (Legos, Star Wars, Polly Pockets, etc).
Budget constraints and access to supplies may be factors when determining the scale of your group. Participants could also contribute supplies or bring their own for each meeting. The possibilities are endless.
The You Tube video would not load in blogger, so HERE is the link:
http://youtu.be/_dM_RgxQ80A
I came across this short video and thought it might be an idea that would be helpful to families. Perhaps it could be adapted to fit your child and their needs and interests (Legos, Star Wars, Polly Pockets, etc).
Budget constraints and access to supplies may be factors when determining the scale of your group. Participants could also contribute supplies or bring their own for each meeting. The possibilities are endless.
The You Tube video would not load in blogger, so HERE is the link:
http://youtu.be/_dM_RgxQ80A
Friday, October 21, 2011
Parent's Right...
The following post was shared on KIDZ today. I thought it had great advice for parents of special needs children. I know I've had a lot of these same feelings at one time or another. While the post was written for a Cerebral Palsey blog, I think it applies to all of us.
By: Jenifer Simpson UCP
Being the parent of a child with disabilities is not really a whole lot different than being a parent of an average child, or so they tell me, but I really don't know because my only child has severe disabilities as a result of cerebral palsy. It is just that such a fuss can be made about it by your friends or family or the professionals around you. The biggest difference is probably that after you get through the first hoop of finding out about your child's disability, you will find the volume of work is bigger, louder and more compelling.
However, at the outset many professionals talk about parents going through something called 'the grieving process' when they first learn of their child's disability. According to this theory, parents first go through a stage of shock. This is followed by a sense of sorrow or grief where parents are thought to mourn for the loss of the "perfect" child that most parents hope for and expect. Then comes denial, according to this theory, where parents deny that their child is really disabled, or perhaps seek out other doctors to get second, third and fourth opinions. Anger and resentment come next, which may include going on searches for cures or fixes, and then finally comes acceptance.
This theory about stages of feelings -- shock, grief, denial, anger and acceptance -- will often be used by the professionals around you.
Doctors, therapists, teachers, early intervention specialists, case workers, disability advocates, lawyers, and a myriad of others who interact with you and your family may describe your feelings and sometimes your actions to you using this feelings model. Although, this grieving process is only a theory, it is widely believed, and you may in fact have all these feelings. But you also will find you don't fit this scenario and may feel you are being told how to feel and resent having certain beliefs or thoughts imposed upon you.
You have the right to whatever feelings you may have, and you may find that the course of your feelings is not like the linear model of this theory. For instance, I cycle through denial and anger periodically in new ways when I am confronted with a new aspect of my son's disability or when I must deal with a new set of therapeutic procedures for him. Occasionally there is something that sets off my 'grief', such as soapy television story or news event that evokes this feeling. Even though I am now ten years into 'accepting' my son's disability, I still have the right to go cry again.
The following is a discussion about feelings and thoughts that may assist you when it all gets a bit crazy.
Anger
Nothing in life really prepares anyone for being disabled and when it is your baby or child who is suddenly the recipient of this label, life may suddenly seem very unfair. You did not ask for this, and there is very little you can do to change it. Your sense of control over your life and the life of your child is at risk. Your relationships with other family members, especially your spouse if there is one, can be under great stress and it may be all you can do to hold yourself together. It is okay to be angry and to do your best to channel your anger into getting the best services you can for your child.
You may find your spiritual beliefs challenged and ask yourself "Why me, God?" or similar self-questioning. Others will be happy to tell you answers to this question, such as "God only picks special people for special children" or similar statements meant to reassure you. Often the truth is less clear-cut, and you have simply been caught unaware or random bad luck has just played a hand in your life. You have a right to your anger and frustration and you can acknowledge these feelings whenever you get to it.
Being Sensible
Everyone is told today that it makes good sense to seek a second opinion before having surgery or before investing money or before buying a used car. It should not be any different for you and your child with a disability, whether you are looking for a doctor who knows about cerebral palsy or a school that will accept your child or a church or synagogue congregation that welcomes you and your family.
If you hear of a new treatment or process that might help your child, you should look into it. You should not be rushed into a decision that can take a long time to make. Unless it is emergency surgery, for instance, you could take a year or so to make up your mind whether to subject your child to a new or another surgery.
It took me eighteen months once to get around to setting up a second opinion appointment for a surgical procedure. It can take a while to read everything you can get your hands on about a certain old or new procedure, for instance. You may find talking with other parents of children with disabilities very useful, but it is you who has to make the decisions and live with them. You deserve to take all the time you need to arrive at a resolution.
Keeping Things Private
In the same way that you may not want to share your anger with anyone and instead resolve things privately or through spiritual counsel, you may find other intrusions annoying. Many parents talk about the effects a child with a disability has on family members' privacy because suddenly new persons are brought into the family circle. A series of professionals who examine, give advice and sometimes even judge, or appear to be judgmental, about the actions of the individual family members may be impacting everyone.
One parent stated that the hardest part for her was "having to turn to experts -- it was difficult to have someone tell me what to do with my child," as if you don't know how to do it.
Some aspects of your life are simply no one else's business. If you do not want to discuss something or if you do not want your child's picture taken, it is your right to say "no" or "not right now" or "I'll think about this and get back to you" or "I'd prefer it if we did this another time." I have stated on several occasions that "I just can't handle this right now," and walked away.
Persistence as a Way of Life
Parenting is not easy, but most all parents try to do the best job they can or know how to do. It can be much harder when well-meaning people tell you that there are some goals they think your child will never be able to reach or that you must stand back and accept the fact that your daughter will never walk. A doctor may make a statement like "oh, he doesn't want to walk" or a family member or friend may tell you or imply you are wasting your time if you persist in a particular course of action.
There is nothing wrong with you if you are not willing to give up a certain attitude or course of action you want to take. Your child has an amazing potential for learning and no one knows what event or combination of events will make a difference in your child's life. Also, it is you that will live the consequences of any of your decisions, and not the well-meaning advisors who come and go in our lives.
Giving Up Is Okay as Well
Well-meaning friends and professionals have also told parents that they have not worked hard or long enough with their child with a disability. Statements such as "If you would just do this at home for 15 minutes a day on the weekends, it would make such a difference," or "if only you would take the time to train him to use the toilet/feed himself/manage his emotions/cut up his food every time/etc.".
The truth is that it could just as easily make no difference at all, and the instruction may in fact be getting in the way of your just plain enjoying your child. Also, when every activity becomes 'a therapy session,' a lot of pleasure can be lost that would otherwise be shared by you and our child. You are the one who lives with your child, and you are the one who is being asked to do just one more thing. If you cannot do something tonight, or every day, okay. That is your decision.
Sometimes advice givers simply don't understand the disability, or to what degree your child is disabled, or how their well-meaning suggestion sounds pretty stupid or crazy to you. For instance, a family member advised me to hang a track-and-lift system on my ceiling when I complained about the amount of lifting I had to do. While the idea had some merit, there was just no way I was going to undertake the hassle of such a design and installation, let alone how I was going to pay for it! Another parent told me about some of the flak she experienced when the placement for her child's disability 'was not inclusive enough'. "They don't understand how disabled he is," she said.
Often others do not understand how profoundly exhausted a parent may become or how few choices there are.
Setting Limits on Expectations
There are limits to what one person can do. You shouldn't expect yourself to think about your child all the time. And your child with a disability shouldn't expect to be the center of attention all the time or the center of your life all the time. It is often easy to have the child with a disabilities set the schedule and tone for all family life. You have limits and your child has limits; learn to recognize both and give yourself a chance to examine the situation before responding in anger or fatigue or with frustration. You are not SUPERPARENT.
I realized I had fallen into this trap once when I set a rule for myself to visit my son every day after work when he was in a children's rehabilitation unit after major surgery. I started to realize that I was demanding too much of myself, that it was all right for me to occasionally not visit him and I could work late or do something else. I understood that he, and I would, survive anyway.
Getting Annoyed With Your Child
There will be days when you like your child and days when you simply don't but that doesn't mean that you don't love this child or that you are experiencing a problem with the disability. Children with cerebral palsy are just as capable of being ornery as other children, and they should be disciplined as any other children. It is up to you as the parent to discern what is misbehavior and what is disability-related expression by your child. And sometimes you just may blow it!
Having Fun
You are not your child's therapist or teacher. You are Mommy or Daddy. Therapy and educational activities at home are certainly beneficial but you and your child need time to just fool around, tickle, giggle, tell stories and just hang out. These times are one of the most important parts of your child's "education" and the love and social skills learned by them will stand in good stead for the future as they will contribute greatly to the self-esteem of your child - and your own self-esteem as a parent.
I remember getting myself in a real emotional state over not finding an early intervention program for my son when he was three. Another parent kindly intervened and said "don't forget to enjoy him." This advice was very timely, and I let go for a while the frantic phone calls searching for 'a placement'. Having fun with your child with cerebral palsy can be a radical idea when you are surrounded by people telling you what to do or what should be happening next.
Being Unenthusiastic is Part of Life
No one expects you to be 'turned on' all the time to addressing the disability of your child. Sometimes you feel sad or you are worried about money or your other children, or you are sick. If other people take that as a sign that you're "not adjusting" or that you're "not accepting your child's disability," that is their problem. No one is excited about work every day. It can be tedious one day and new and interesting the next. The same is true of parenting. There will be days when your child thrills you with joy and days when parenting will seem like the most boring job on earth. You have the right to be "up" sometimes and "down" other days, and living with a child with cerebral palsy may emphasize this aspect of parenting.
Taking Time Off or Having a Life
As a parent you need time to yourself, with your spouse or partner and with other family members, and just time without kids around. Many parents describe the first time they went to the grocery store alone after their child was born as a tremendous feeling of freedom -- even though they were doing a chore, and even though they didn't talk to anyone but the checkout clerk. There are many parts of your life and each deserves as much attention and nurturing as does your special needs child. At one point I realized that I had no social life and, even though it meant spending money for a respite worker, the time taken to build friendships has probably helped me be a better parent to my child. And even if it has taken time and energy away from my child, I now have 'a life' and can talk about more than my son and his disability.
Being the Expert-In-Charge
You know your child better than anyone else as you have spent the most time and lived the longest with this child with a disability, longer than anyone else. You know what works and what doesn't; you have the big picture and history of your child and can utilize this in any situation. Support personnel come and go but you are the expert with the experience and first-hand knowledge of your child. In ten years of living with my son's disability, he has had six pediatricians and at least fifteen different physical therapists. One year we went through ten different personal care attendants!
In a fast-paced world, the parent of a child with a disability will be one of the constants in their life, and this responsibility often means protecting a child through assertive statements by the parent about how the child should be handled.
As the expert you have the right to be in charge of your child's educational, social and medical and other decisions, at least until your child can do this for him or herself. Professionals do not live the consequences of their decisions, so while you want their opinions, remember that they are only 'informed' opinions and not facts. They shouldn't tell you are wrong, that you will regret it, that you are selfish, or that you are not looking far enough ahead. Nor should they make you feel guilty or pressure you into a decision.
And it is not just experts who put this pressure on you; you may experience criticism from unexpected quarters, such as family members or visitors! A dinner guest once criticized me saying I should feed my son first, not me beforehand. I do this because I know how cranky I get when hungry and that I won't have the patience to feed my son. This rudeness reminded me that casual strangers often can misinterpret and misunderstand situations.
Parents are probably the single most important resource that a child with a disability has and often the child's only friend and advocate. This should be respected and if it isn't, it is time to find and surround oneself with supportive people, and professionals, who will respect this.
Keeping One's Dignity
You expect to be neither pitied nor admired but you do expect to be listened to and taken seriously. You expect the truth from doctors, teachers, social workers, and therapists who are there to help you. You deserve to know why the doctor is looking into your child's ear. If the doctor doesn't volunteer the reason, you can ask. From your friends and neighbors and from your family members who love you, you deserve a chance to be someone other than "the parent of the C.P.". You deserve to be talked to as an adult.
Sometimes when you are the parent of a child with a disability, you have to risk being aggressive, or more assertive, in order to obtain the dignity that is your right and your due. One surgeon once told me I "was a bad parent" if I didn't consent right away to a surgical recommendation he was making. You can be sure we never visited him again, and I found another with a better bedside manner!
Most of the suggestions and guidance that you receive from others should be taken for what they are: advice that you will ponder and which you may, or may not, act on. Even the most offensive-seeming suggestions are usually well-intentioned: it is just your call as to what to do with them.
None of these feelings apply just to parents of children with disabilities. All parents have certain common experiences, whether you have one child or ten, or whether your child with a disability is your first and only child, one of many children or the second disabled child in your family. You cannot forget that you are an adult with your own needs, desires, hopes and dreams. Over time you will change, just like all adults do and this will change the relationship you will have with your child. Enjoy your individuality and enjoy your child!
Jenifer Simpson is a former policy associate in the national office of UCP in Washington, DC, and the parent of a son, Joshua Chartienitz, who has cerebral palsy.
© United Cerebral Palsy
By: Jenifer Simpson UCP
Being the parent of a child with disabilities is not really a whole lot different than being a parent of an average child, or so they tell me, but I really don't know because my only child has severe disabilities as a result of cerebral palsy. It is just that such a fuss can be made about it by your friends or family or the professionals around you. The biggest difference is probably that after you get through the first hoop of finding out about your child's disability, you will find the volume of work is bigger, louder and more compelling.
However, at the outset many professionals talk about parents going through something called 'the grieving process' when they first learn of their child's disability. According to this theory, parents first go through a stage of shock. This is followed by a sense of sorrow or grief where parents are thought to mourn for the loss of the "perfect" child that most parents hope for and expect. Then comes denial, according to this theory, where parents deny that their child is really disabled, or perhaps seek out other doctors to get second, third and fourth opinions. Anger and resentment come next, which may include going on searches for cures or fixes, and then finally comes acceptance.
This theory about stages of feelings -- shock, grief, denial, anger and acceptance -- will often be used by the professionals around you.
Doctors, therapists, teachers, early intervention specialists, case workers, disability advocates, lawyers, and a myriad of others who interact with you and your family may describe your feelings and sometimes your actions to you using this feelings model. Although, this grieving process is only a theory, it is widely believed, and you may in fact have all these feelings. But you also will find you don't fit this scenario and may feel you are being told how to feel and resent having certain beliefs or thoughts imposed upon you.
You have the right to whatever feelings you may have, and you may find that the course of your feelings is not like the linear model of this theory. For instance, I cycle through denial and anger periodically in new ways when I am confronted with a new aspect of my son's disability or when I must deal with a new set of therapeutic procedures for him. Occasionally there is something that sets off my 'grief', such as soapy television story or news event that evokes this feeling. Even though I am now ten years into 'accepting' my son's disability, I still have the right to go cry again.
The following is a discussion about feelings and thoughts that may assist you when it all gets a bit crazy.
Anger
Nothing in life really prepares anyone for being disabled and when it is your baby or child who is suddenly the recipient of this label, life may suddenly seem very unfair. You did not ask for this, and there is very little you can do to change it. Your sense of control over your life and the life of your child is at risk. Your relationships with other family members, especially your spouse if there is one, can be under great stress and it may be all you can do to hold yourself together. It is okay to be angry and to do your best to channel your anger into getting the best services you can for your child.
You may find your spiritual beliefs challenged and ask yourself "Why me, God?" or similar self-questioning. Others will be happy to tell you answers to this question, such as "God only picks special people for special children" or similar statements meant to reassure you. Often the truth is less clear-cut, and you have simply been caught unaware or random bad luck has just played a hand in your life. You have a right to your anger and frustration and you can acknowledge these feelings whenever you get to it.
Being Sensible
Everyone is told today that it makes good sense to seek a second opinion before having surgery or before investing money or before buying a used car. It should not be any different for you and your child with a disability, whether you are looking for a doctor who knows about cerebral palsy or a school that will accept your child or a church or synagogue congregation that welcomes you and your family.
If you hear of a new treatment or process that might help your child, you should look into it. You should not be rushed into a decision that can take a long time to make. Unless it is emergency surgery, for instance, you could take a year or so to make up your mind whether to subject your child to a new or another surgery.
It took me eighteen months once to get around to setting up a second opinion appointment for a surgical procedure. It can take a while to read everything you can get your hands on about a certain old or new procedure, for instance. You may find talking with other parents of children with disabilities very useful, but it is you who has to make the decisions and live with them. You deserve to take all the time you need to arrive at a resolution.
Keeping Things Private
In the same way that you may not want to share your anger with anyone and instead resolve things privately or through spiritual counsel, you may find other intrusions annoying. Many parents talk about the effects a child with a disability has on family members' privacy because suddenly new persons are brought into the family circle. A series of professionals who examine, give advice and sometimes even judge, or appear to be judgmental, about the actions of the individual family members may be impacting everyone.
One parent stated that the hardest part for her was "having to turn to experts -- it was difficult to have someone tell me what to do with my child," as if you don't know how to do it.
Some aspects of your life are simply no one else's business. If you do not want to discuss something or if you do not want your child's picture taken, it is your right to say "no" or "not right now" or "I'll think about this and get back to you" or "I'd prefer it if we did this another time." I have stated on several occasions that "I just can't handle this right now," and walked away.
Persistence as a Way of Life
Parenting is not easy, but most all parents try to do the best job they can or know how to do. It can be much harder when well-meaning people tell you that there are some goals they think your child will never be able to reach or that you must stand back and accept the fact that your daughter will never walk. A doctor may make a statement like "oh, he doesn't want to walk" or a family member or friend may tell you or imply you are wasting your time if you persist in a particular course of action.
There is nothing wrong with you if you are not willing to give up a certain attitude or course of action you want to take. Your child has an amazing potential for learning and no one knows what event or combination of events will make a difference in your child's life. Also, it is you that will live the consequences of any of your decisions, and not the well-meaning advisors who come and go in our lives.
Giving Up Is Okay as Well
Well-meaning friends and professionals have also told parents that they have not worked hard or long enough with their child with a disability. Statements such as "If you would just do this at home for 15 minutes a day on the weekends, it would make such a difference," or "if only you would take the time to train him to use the toilet/feed himself/manage his emotions/cut up his food every time/etc.".
The truth is that it could just as easily make no difference at all, and the instruction may in fact be getting in the way of your just plain enjoying your child. Also, when every activity becomes 'a therapy session,' a lot of pleasure can be lost that would otherwise be shared by you and our child. You are the one who lives with your child, and you are the one who is being asked to do just one more thing. If you cannot do something tonight, or every day, okay. That is your decision.
Sometimes advice givers simply don't understand the disability, or to what degree your child is disabled, or how their well-meaning suggestion sounds pretty stupid or crazy to you. For instance, a family member advised me to hang a track-and-lift system on my ceiling when I complained about the amount of lifting I had to do. While the idea had some merit, there was just no way I was going to undertake the hassle of such a design and installation, let alone how I was going to pay for it! Another parent told me about some of the flak she experienced when the placement for her child's disability 'was not inclusive enough'. "They don't understand how disabled he is," she said.
Often others do not understand how profoundly exhausted a parent may become or how few choices there are.
Setting Limits on Expectations
There are limits to what one person can do. You shouldn't expect yourself to think about your child all the time. And your child with a disability shouldn't expect to be the center of attention all the time or the center of your life all the time. It is often easy to have the child with a disabilities set the schedule and tone for all family life. You have limits and your child has limits; learn to recognize both and give yourself a chance to examine the situation before responding in anger or fatigue or with frustration. You are not SUPERPARENT.
I realized I had fallen into this trap once when I set a rule for myself to visit my son every day after work when he was in a children's rehabilitation unit after major surgery. I started to realize that I was demanding too much of myself, that it was all right for me to occasionally not visit him and I could work late or do something else. I understood that he, and I would, survive anyway.
Getting Annoyed With Your Child
There will be days when you like your child and days when you simply don't but that doesn't mean that you don't love this child or that you are experiencing a problem with the disability. Children with cerebral palsy are just as capable of being ornery as other children, and they should be disciplined as any other children. It is up to you as the parent to discern what is misbehavior and what is disability-related expression by your child. And sometimes you just may blow it!
Having Fun
You are not your child's therapist or teacher. You are Mommy or Daddy. Therapy and educational activities at home are certainly beneficial but you and your child need time to just fool around, tickle, giggle, tell stories and just hang out. These times are one of the most important parts of your child's "education" and the love and social skills learned by them will stand in good stead for the future as they will contribute greatly to the self-esteem of your child - and your own self-esteem as a parent.
I remember getting myself in a real emotional state over not finding an early intervention program for my son when he was three. Another parent kindly intervened and said "don't forget to enjoy him." This advice was very timely, and I let go for a while the frantic phone calls searching for 'a placement'. Having fun with your child with cerebral palsy can be a radical idea when you are surrounded by people telling you what to do or what should be happening next.
Being Unenthusiastic is Part of Life
No one expects you to be 'turned on' all the time to addressing the disability of your child. Sometimes you feel sad or you are worried about money or your other children, or you are sick. If other people take that as a sign that you're "not adjusting" or that you're "not accepting your child's disability," that is their problem. No one is excited about work every day. It can be tedious one day and new and interesting the next. The same is true of parenting. There will be days when your child thrills you with joy and days when parenting will seem like the most boring job on earth. You have the right to be "up" sometimes and "down" other days, and living with a child with cerebral palsy may emphasize this aspect of parenting.
Taking Time Off or Having a Life
As a parent you need time to yourself, with your spouse or partner and with other family members, and just time without kids around. Many parents describe the first time they went to the grocery store alone after their child was born as a tremendous feeling of freedom -- even though they were doing a chore, and even though they didn't talk to anyone but the checkout clerk. There are many parts of your life and each deserves as much attention and nurturing as does your special needs child. At one point I realized that I had no social life and, even though it meant spending money for a respite worker, the time taken to build friendships has probably helped me be a better parent to my child. And even if it has taken time and energy away from my child, I now have 'a life' and can talk about more than my son and his disability.
Being the Expert-In-Charge
You know your child better than anyone else as you have spent the most time and lived the longest with this child with a disability, longer than anyone else. You know what works and what doesn't; you have the big picture and history of your child and can utilize this in any situation. Support personnel come and go but you are the expert with the experience and first-hand knowledge of your child. In ten years of living with my son's disability, he has had six pediatricians and at least fifteen different physical therapists. One year we went through ten different personal care attendants!
In a fast-paced world, the parent of a child with a disability will be one of the constants in their life, and this responsibility often means protecting a child through assertive statements by the parent about how the child should be handled.
As the expert you have the right to be in charge of your child's educational, social and medical and other decisions, at least until your child can do this for him or herself. Professionals do not live the consequences of their decisions, so while you want their opinions, remember that they are only 'informed' opinions and not facts. They shouldn't tell you are wrong, that you will regret it, that you are selfish, or that you are not looking far enough ahead. Nor should they make you feel guilty or pressure you into a decision.
And it is not just experts who put this pressure on you; you may experience criticism from unexpected quarters, such as family members or visitors! A dinner guest once criticized me saying I should feed my son first, not me beforehand. I do this because I know how cranky I get when hungry and that I won't have the patience to feed my son. This rudeness reminded me that casual strangers often can misinterpret and misunderstand situations.
Parents are probably the single most important resource that a child with a disability has and often the child's only friend and advocate. This should be respected and if it isn't, it is time to find and surround oneself with supportive people, and professionals, who will respect this.
Keeping One's Dignity
You expect to be neither pitied nor admired but you do expect to be listened to and taken seriously. You expect the truth from doctors, teachers, social workers, and therapists who are there to help you. You deserve to know why the doctor is looking into your child's ear. If the doctor doesn't volunteer the reason, you can ask. From your friends and neighbors and from your family members who love you, you deserve a chance to be someone other than "the parent of the C.P.". You deserve to be talked to as an adult.
Sometimes when you are the parent of a child with a disability, you have to risk being aggressive, or more assertive, in order to obtain the dignity that is your right and your due. One surgeon once told me I "was a bad parent" if I didn't consent right away to a surgical recommendation he was making. You can be sure we never visited him again, and I found another with a better bedside manner!
Most of the suggestions and guidance that you receive from others should be taken for what they are: advice that you will ponder and which you may, or may not, act on. Even the most offensive-seeming suggestions are usually well-intentioned: it is just your call as to what to do with them.
None of these feelings apply just to parents of children with disabilities. All parents have certain common experiences, whether you have one child or ten, or whether your child with a disability is your first and only child, one of many children or the second disabled child in your family. You cannot forget that you are an adult with your own needs, desires, hopes and dreams. Over time you will change, just like all adults do and this will change the relationship you will have with your child. Enjoy your individuality and enjoy your child!
Jenifer Simpson is a former policy associate in the national office of UCP in Washington, DC, and the parent of a son, Joshua Chartienitz, who has cerebral palsy.
© United Cerebral Palsy
Sunday, August 28, 2011
Living Well on the Spectrum...
I came across a book this past week that I think may prove to be beneficial for some members of our group. I know as Jackson grows into the teenage years and into adult hood, the topics and areas this book discusses may help me to navigate situations and help Jackson plan, prepare for, and successfully execute the next stage of life.
The book is called, Living Well on the Spectrum by Valerie L. Gaus, PhD
While a 7q11.23 Duplication child may or may not have received an official autism spectrum diagnosis, we do know that some treatments to help individuals with autism can also be beneficial for a 7q11.23 Dupe individual.
As you explore this book, it may help you understand some of the perspectives that a 7q11.23 Dupe individual may experience. Often times, at this stage of life, it is difficult for Jackson to clearly articulate how he may feel, what may cause anxiety, why certain situations are enjoyable, or why social situations are so uncomfortable. By utilizing the worksheets and outlines in the book, you may be able to further identify challenges and find additional coping strategies to help individuals become even more successful in their pursuits and in life.
The following is an excerpt from the book.
"On a daily basis, adults on the spectrum face stressful, frustrating, and sometimes debilitating roadblocks that most neurotypical individuals don't appreciate or understand. Author Valerie Gaus, a psychologist who has been immersed in working with spectrum adults for more than 15 years, 'gets it.'
Her newest book...is a straight-talking roadmap that will provide both wind and rudder to help adults navigate daily life and meet long-term goals. Filled with practical strategies to minimize stress and maximize progress toward individual goals, this book exudes an unwavering strength-based, can-do attitude.
Dr. Gaus reinterprets what could be considered deficits and weaknesses of AS/HFA into distinctive strengths that can be used to one's advantage throughout life. She infuses this attitude with candor and sensitivity...She combines an uncanny understanding of the challenges ASD presents with an array of practical, problem-solving tactics. What's different about this book is the methodical, concrete way she helps the spectrum adult assess his or her current way of thinking and functioning, recognize the patterns that are interfering with personal and professional success, and then create a customized step-by-step personal solution plan. Living Well is a powerful guide for achieving well-being in all areas of life."
-Autism Asperger's Digest
The book is called, Living Well on the Spectrum by Valerie L. Gaus, PhD
While a 7q11.23 Duplication child may or may not have received an official autism spectrum diagnosis, we do know that some treatments to help individuals with autism can also be beneficial for a 7q11.23 Dupe individual.
As you explore this book, it may help you understand some of the perspectives that a 7q11.23 Dupe individual may experience. Often times, at this stage of life, it is difficult for Jackson to clearly articulate how he may feel, what may cause anxiety, why certain situations are enjoyable, or why social situations are so uncomfortable. By utilizing the worksheets and outlines in the book, you may be able to further identify challenges and find additional coping strategies to help individuals become even more successful in their pursuits and in life.
The following is an excerpt from the book.
"On a daily basis, adults on the spectrum face stressful, frustrating, and sometimes debilitating roadblocks that most neurotypical individuals don't appreciate or understand. Author Valerie Gaus, a psychologist who has been immersed in working with spectrum adults for more than 15 years, 'gets it.'
Her newest book...is a straight-talking roadmap that will provide both wind and rudder to help adults navigate daily life and meet long-term goals. Filled with practical strategies to minimize stress and maximize progress toward individual goals, this book exudes an unwavering strength-based, can-do attitude.
Dr. Gaus reinterprets what could be considered deficits and weaknesses of AS/HFA into distinctive strengths that can be used to one's advantage throughout life. She infuses this attitude with candor and sensitivity...She combines an uncanny understanding of the challenges ASD presents with an array of practical, problem-solving tactics. What's different about this book is the methodical, concrete way she helps the spectrum adult assess his or her current way of thinking and functioning, recognize the patterns that are interfering with personal and professional success, and then create a customized step-by-step personal solution plan. Living Well is a powerful guide for achieving well-being in all areas of life."
-Autism Asperger's Digest
Tuesday, August 23, 2011
Transition Periods of Life
Each stage life brings new challenges and learning opportunities. While each stage of life has its joys and celebrations, there are also hurdles and situations that require finesse. Two of those stages are the maturation process for teens and young adults, and transitions to adult services and lifestyles.
Sometimes, we are not sure how to go about discussing these areas with our children who have special needs. However, it is crucial that we do cover these topics with our children. They need the information for their benefit as well as their safety. The following materials may help you in your discussions and teaching moments with your child.
The following link takes you to a training page for the PACER Center. The Pacer Center partners with each State's Parent Center to provide information and training. Because of the work I do with the Utah Parent Center, I've known about these training classes which are offered to parents and teachers. You may want to contact your state's Parent Center to find out if similar training is being offered in your area.
Use these training materials either as a supplement to the class or if you are unable to attend a training session. The Pacer Center has loaded the documents on their website. In the future, if this link is disabled, the information can also be found through the Pacer Center and their Fast Training Index.
The following are webinar introductions to the trainings:
Maturation Transition: http://www.fastfamilysupport.org/Webinar/video.asp?vf=Adulthood
Adult Transition: http://www.fastfamilysupport.org/Webinar/video.asp?vf=FirstJob
Power point presentation slides and training materials can be found for the following material in addition to many other topics. http://www.fastfamilysupport.org/fasttraining/index.asp
Information can be found in Spanish or English.
Topics include:
* Getting and keeping a first job
* Building a Resume
* Maturation - What every parent needs to know
* Tools parents can use - A Handbook for Parents of Disabled Teenagers
* Social Concentric Circle
* Adolescence Time Line for Girls
* Adolescence Time Line for Boys
Pacer Center:
http://www.pacer.org/
The mission of PACER Center (Parent Advocacy Coalition for Educational Rights) is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents.
Founded in 1977, PACER Center was created by parents of children and youth with disabilities to help other parents and families facing similar challenges. Today, PACER Center expands opportunities and enhances the quality of life of children and young adults with disabilities and their families. PACER is staffed primarily by parents of children with disabilities and works in coalition with 18 disability organizations.
Pacer Training Information:
http://www.fastfamilysupport.org/
If you have additional information that is beneficial in talking about these areas with children who have disabilities, please leave a comment.
Sometimes, we are not sure how to go about discussing these areas with our children who have special needs. However, it is crucial that we do cover these topics with our children. They need the information for their benefit as well as their safety. The following materials may help you in your discussions and teaching moments with your child.
The following link takes you to a training page for the PACER Center. The Pacer Center partners with each State's Parent Center to provide information and training. Because of the work I do with the Utah Parent Center, I've known about these training classes which are offered to parents and teachers. You may want to contact your state's Parent Center to find out if similar training is being offered in your area.
Use these training materials either as a supplement to the class or if you are unable to attend a training session. The Pacer Center has loaded the documents on their website. In the future, if this link is disabled, the information can also be found through the Pacer Center and their Fast Training Index.
The following are webinar introductions to the trainings:
Maturation Transition: http://www.fastfamilysupport.org/Webinar/video.asp?vf=Adulthood
Adult Transition: http://www.fastfamilysupport.org/Webinar/video.asp?vf=FirstJob
Power point presentation slides and training materials can be found for the following material in addition to many other topics. http://www.fastfamilysupport.org/fasttraining/index.asp
Information can be found in Spanish or English.
Topics include:
* Getting and keeping a first job
* Building a Resume
* Maturation - What every parent needs to know
* Tools parents can use - A Handbook for Parents of Disabled Teenagers
* Social Concentric Circle
* Adolescence Time Line for Girls
* Adolescence Time Line for Boys
Pacer Center:
http://www.pacer.org/
The mission of PACER Center (Parent Advocacy Coalition for Educational Rights) is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents.
Founded in 1977, PACER Center was created by parents of children and youth with disabilities to help other parents and families facing similar challenges. Today, PACER Center expands opportunities and enhances the quality of life of children and young adults with disabilities and their families. PACER is staffed primarily by parents of children with disabilities and works in coalition with 18 disability organizations.
Pacer Training Information:
http://www.fastfamilysupport.org/
If you have additional information that is beneficial in talking about these areas with children who have disabilities, please leave a comment.
Monday, August 22, 2011
Technology and Our Kids...
SNApps4Kids is a community of parents, therapists, doctors, and teachers who share information on how we are using the iPad, iPhone, iPod Touch and Android devices with children who have special needs. We have found these mobile devices to provide accessibility for children who may have been previously disengaged from the world because of challenging language, motor, or other developmental delays. Given the rising number of apps on the market and the diverse skills of children with special needs, parents have found each other to be one of the best resources for choosing apps to enhance everyday life for our children.
Check out this link for more information: http://www.snapps4kids.com/
Check out this link for more information: http://www.snapps4kids.com/
Sunday, August 21, 2011
Wow! Where Has The Summer Gone?
This post was taken from the Utah Family Voices August 2011 Newsletter. I thought it was valuable information to pass along to our families.
"Hopefully everyone has had a relaxing, fun summer so that you are re-fueled and ready to start a new and exciting school year! Whoo-Hoo!
Okay, maybe I sound a little over-excited, but it is time, definitely time, for my kids to go back to school! When you think of being "ready" for the school year, what does that mean to you?
It starts with registration day - I try to pick up our registration papers after the actual day they open for registration-to get in and out quickly, and I do not bring my son in with me.My son has autism, and bringing him into the school before the first day makes him confused and upset. He knows where his classroom is, and no matter how many times I tell him we are only there to sign papers, he wants to start school that day.
What else does a parent of a child with special health care needs think about before school starts? Of course we think about getting new shoes, and maybe some new clothes, supplies, etc., but what else?
I think about IEP Goals, and his Health Care Plan. What has changed over the summer, and should I make sure his IEP and Health Care Plan reflect those changes? YES, and I don't wait for someone else to ask me about it.
Sometimes kids make progress over the summer, and you should always make sure the teacher knows about the progress. This can make a difference in how they go about working with your child, and can reduce frustrations your child may have. For example, if your child has mastered something over the summer that they were working on before school ended, he may not want to keep working on it when he starts his new school year. If your child has communication issues, this may be something he has a very hard time communicating, and may react. Remember, we all want to come back to school to learn new things, and have a fresh start. No matter what disability your child has, they probably feel the same.
If your child has a non-verbal speech impairment, or social struggles, it is a good idea to give the teacher a list of the things they did over the summer (fishing, swimming, travel, play, etc.). Most kids come back to school and talk with their peers and teachers about what they did during break. If someone knows these things, they can ask your child and give them the opportunity to engage in the "back to school" conversations with everyone else.
Next - Does your child have a Health Care Plan at school? Have there been changes with his/her health? Have you made any changes with his prescription medication? This is something you want to make sure you have changed as soon as possible. Normal protocol would be for the school nurse to contact you and ask these questions, but remember, the start of school is busy for everyone - especially our school nurses, so if you do not receive a call, give them a call and make the arrangements to update the Health Care Plan. When changes are made to the Health Care Plan the school nurse will ask you to approve sign the revised copy. At this time you can look over the whole plan and make sure it reflects the changes made. You may also want to look over the whole plan to make sure it is still appropriate for the new school year."
Here's to a great school year and much success for our kids!
For more information on School Health Care Plans, go to:
"Hopefully everyone has had a relaxing, fun summer so that you are re-fueled and ready to start a new and exciting school year! Whoo-Hoo!
Okay, maybe I sound a little over-excited, but it is time, definitely time, for my kids to go back to school! When you think of being "ready" for the school year, what does that mean to you?
It starts with registration day - I try to pick up our registration papers after the actual day they open for registration-to get in and out quickly, and I do not bring my son in with me.My son has autism, and bringing him into the school before the first day makes him confused and upset. He knows where his classroom is, and no matter how many times I tell him we are only there to sign papers, he wants to start school that day.
What else does a parent of a child with special health care needs think about before school starts? Of course we think about getting new shoes, and maybe some new clothes, supplies, etc., but what else?
I think about IEP Goals, and his Health Care Plan. What has changed over the summer, and should I make sure his IEP and Health Care Plan reflect those changes? YES, and I don't wait for someone else to ask me about it.
Sometimes kids make progress over the summer, and you should always make sure the teacher knows about the progress. This can make a difference in how they go about working with your child, and can reduce frustrations your child may have. For example, if your child has mastered something over the summer that they were working on before school ended, he may not want to keep working on it when he starts his new school year. If your child has communication issues, this may be something he has a very hard time communicating, and may react. Remember, we all want to come back to school to learn new things, and have a fresh start. No matter what disability your child has, they probably feel the same.
If your child has a non-verbal speech impairment, or social struggles, it is a good idea to give the teacher a list of the things they did over the summer (fishing, swimming, travel, play, etc.). Most kids come back to school and talk with their peers and teachers about what they did during break. If someone knows these things, they can ask your child and give them the opportunity to engage in the "back to school" conversations with everyone else.
Next - Does your child have a Health Care Plan at school? Have there been changes with his/her health? Have you made any changes with his prescription medication? This is something you want to make sure you have changed as soon as possible. Normal protocol would be for the school nurse to contact you and ask these questions, but remember, the start of school is busy for everyone - especially our school nurses, so if you do not receive a call, give them a call and make the arrangements to update the Health Care Plan. When changes are made to the Health Care Plan the school nurse will ask you to approve sign the revised copy. At this time you can look over the whole plan and make sure it reflects the changes made. You may also want to look over the whole plan to make sure it is still appropriate for the new school year."
Here's to a great school year and much success for our kids!
For more information on School Health Care Plans, go to:
Friday, May 27, 2011
Link Reward System / ADHD
Question: Does anyone have any suggestions of rules and responsibilities and rewards for helping a 9 year old girls with her behavior? She has recently been diagonsed with ADHD
Answer:
Cayden, 6 years old, had ADHD also. His behavior is out of this world and we did go to medicine, however, the teacher worked with us on creating a “link” reward system and Cayden is allowed to chew gum during the day. It allows him to focus a bit better.
The link reward system is where for every time the teacher catches Cayden being good they give him a link (we use plastic colorful paperclips at home) after 10 links are earned he gets to go to the treasure box. IT IS IMPORTANT THAT EVERYONE RECOGNIZES THE GOOD BEHAVIORS BUT DOESN’T HARP ON THE BAD ONES. This is what Cayden’s psychiatrist has said. The teachers can turn it around. Also, we use the system at home, but a bit different because he is on one med at home and I know he has a bit of help so it is a little bit more difficult to get a link. Cayden gets links for being good at speech therapy (private), he gets one for being good that day ( I gauge the behavior based upon age and what I think he is capable of). The teachers and I also have a special “gotcha” reward and that is if they are behaving somewhere you have gone (shopping, doctor’s, dentist etc) then they get a link for getting caught being good.
After 10 links he gets to go to the treasure box. The treasure box contains all different types of toys, books, stickers. I let him pick out things at Wal-Mart, Target, Five Below and Dollar Trees so that I know that he will want them.
Another thing that the teachers do is give Cayden certificates of behavior (responsibility, great attitude, finishing tasks etc). You can get these at Dollar Store. If you can’t find them I would be happy to get them and send them so you can give them to teachers. I display these in my kitchen where everyone can see them and he gets another link at home for them.
Because Cayden is on meds it is easier to get through to him so this has worked out well. However, I did try a responsibility chart with him before the meds when he was three and that worked out okay.
Cayden was a “I don’t care what you do to me, I am not going to do it” attitude. It is very difficult to get through to them and you have to find what makes them “tick”.
Cayden was almost put in a behavior class because of his bad behavior at school, which is the WORST thing to do to a duplication child!
As far as school goes, you have a child that has ADHD and the school now has to provide exceptions. ADHD is now looked at no differently than an autistic child because it is a neurological issue (front lobe). Just a suggestion, I would call an IEP meeting and have them come up with ways to deal with Gabi’s behavior.
Some of the things they did for Cayden before the meds:
- Had him carry bottles from one end to another. (he doesn’t need this any more)
- Chewing gum
- Had his own seat up front
- Had a special place for him to go if he needed comforting
- Gave him time on the computer if he was good (It has been proved that video and computer games stimulate ADHD kids. Cayden is very good at them. There are many advantages to them. (fine motor skills, coordination, learning games etc)
Now that Cayden is on a med, only gum and a seat up front is what is needed now. His whole entire attitude changed when I put him on Abilify 2mg a day. Cayden has ADHD and ODD (oppositional defiance disorder).
I wish you all the best in trying to find that one or two things that work. It is a difficult journey and nobody knows exactly how difficult it is.
Take care,
Susan
* Other input from a mom on this post: One note on videos, and especially computer games: The evaluator who diagnosed my son’s ADHD told me that TV watching and playing computer games should be limited to no more than 20 minutes at a time, because that’s the point where children’s brains (especially children with ADHD) become overstimulated, and nerve cells start shutting down. She said, “After 20 minutes, their brains start to turn to mush. It’s just too much input.” Scary – scary enough for me to schedule 20 minutes of computer time, then a break to play outside, play with Legos, read . . . and 20 minutes again later.
* Another mom said, "This will not apply to all but maybe can help some. My 5 yr old granddaughter can have bad behavioral problems, they just found out she has a strange food allergy that makes her aggressive (my son also had this when he was little) so far they know milk, bleached flour and red 40 make her like this. I don't think blood tests detect these kinds of allergies, she is getting tested in a couple weeks with an electro dermal machine, hoping that will show them all the foods. but she behaves so much better and can control herself better if she does not eat these foods, I have seen the difference."
* Other input from a mom on this post: One note on videos, and especially computer games: The evaluator who diagnosed my son’s ADHD told me that TV watching and playing computer games should be limited to no more than 20 minutes at a time, because that’s the point where children’s brains (especially children with ADHD) become overstimulated, and nerve cells start shutting down. She said, “After 20 minutes, their brains start to turn to mush. It’s just too much input.” Scary – scary enough for me to schedule 20 minutes of computer time, then a break to play outside, play with Legos, read . . . and 20 minutes again later.
* Another mom said, "This will not apply to all but maybe can help some. My 5 yr old granddaughter can have bad behavioral problems, they just found out she has a strange food allergy that makes her aggressive (my son also had this when he was little) so far they know milk, bleached flour and red 40 make her like this. I don't think blood tests detect these kinds of allergies, she is getting tested in a couple weeks with an electro dermal machine, hoping that will show them all the foods. but she behaves so much better and can control herself better if she does not eat these foods, I have seen the difference."
Thursday, May 26, 2011
Brain Exercises
This was sent in by one of our parents in the support group. This article contains a lot of good information on how the brain works and what is good and bad for it.
http://www.fi.edu/learn/brain/exercise.html
http://www.fi.edu/learn/brain/exercise.html
(photo courtesy of the article)
Monday, May 2, 2011
ADHD and "Fidgets"
Hi,
I know that this is a very simple thing but it works with Cayden and it is in his IEP.
Another type of therapy:
Because Cayden has ADHD, it doesn’t mean the medicine that he is on completely gets rid of it, so the school has allowed him to chew gum during the day. This is a sensory issue. It actually REALLY helps Cayden to focus. I send sugarless gum all the time and it works. The teachers will say that it works and they can see a difference when he is out of gum.
Just an FYI.
Also, I know many kids have a hard time sleeping. I give Cayden .5 of melatonin in the evening so he can get to sleep. It is perfectly safe, but the most important thing is that Cayden gets the rest he needs to function better the next day. As you know ADHD kids seem to be more active if they don’t get their rest. Note that melatonin assists them in getting to sleep it doesn’t keep them asleep during the night so Cayden is NOT drowsy the next day. The melatonin is approved by Cayden Genetics, Psychiatrist and Peds Neurologist Dr.
These are a couple of tips and tricks I have found along the way.
Take care all,
Susan
ps - "Fidgets" are items kids can use to help combat their restlessness. The gum Susan mentioned is one such item. Sometimes therapists will have kids squeeze stress balls, texture balls, or bounce or sit on a large exercise ball rather than in a chair. Other accommodations can also be written into an IEP. For instance, if a child has a difficult time sitting, he can be allowed to pace the back of the room during "circle time" in a taped off area as long as he is quiet. If he isn't quiet, he has to rejoin the group. Often times these sensory output moments will help to refocus the child. Let us know what helps your child! Thanks, Jennie
Sunday, May 1, 2011
Primary and Secondary Therapies for Sensory Processing Disorder and other Issues
(....from Growing and In-Sync Child, by Carol Kranowitz and Joye Newman (Perigee 2010) and from a handout given to me by Carol Karnowitz when I attended her seminar on SPD, at Utah State University, in Logan, Utah; in 2010.)
Many of the individuals who have 7q11.23 Duplication, also have trouble with some aspect of Sensory Processing Disorder (SPD). SPD has also been referred to as Sensory Integration Disorder. The list below includes basic information about some professionals and their therapies that may benefit a child with Sensory Processing Disorder. For more details and information, see http://www.spdfoundation.net/.
But first, what is Sensory Processing Disorder?
Think of a developing child as a tree. The stronger the roots, the more nutrients will be absorbed, the more anchored the tree will be, and the sturdier the trunk and branches will grow. A child with strong roots is likely to grow into a sturdy, thriving, blossoming individual.
We think of a child's roots as having three major components - Sensory Processing skills, Perceptual Motor skills, and Visual skills. Sensory Processing Disorder occurs when these core areas are out of sync.
Sensory Processing involves touch, movement, and position senses. These are all primary to development. Tactile processing refers to touch or being touched by either a person or objects. Vestibular processing is taking in sensations about the pull of gravity through the inner ear and then responding to these sensations. And proprioceptive processing is the unconscious awareness of sensations coming from muscles and joints.
Perceptual Motor skills depend upon a sound sensory processing base. These skills include balance, bilateral coordination, body awareness, directionality, mid-line crossing, motor planning, and spatial awareness. Visual Processing is the interpretation and response to information received through the eyes. Some essential visual processing skills are acuity, binocularity, and visual tracking.
Many of the individuals who have 7q11.23 Duplication, also have trouble with some aspect of Sensory Processing Disorder (SPD). SPD has also been referred to as Sensory Integration Disorder. The list below includes basic information about some professionals and their therapies that may benefit a child with Sensory Processing Disorder. For more details and information, see http://www.spdfoundation.net/.
But first, what is Sensory Processing Disorder?
Think of a developing child as a tree. The stronger the roots, the more nutrients will be absorbed, the more anchored the tree will be, and the sturdier the trunk and branches will grow. A child with strong roots is likely to grow into a sturdy, thriving, blossoming individual.
We think of a child's roots as having three major components - Sensory Processing skills, Perceptual Motor skills, and Visual skills. Sensory Processing Disorder occurs when these core areas are out of sync.
Sensory Processing involves touch, movement, and position senses. These are all primary to development. Tactile processing refers to touch or being touched by either a person or objects. Vestibular processing is taking in sensations about the pull of gravity through the inner ear and then responding to these sensations. And proprioceptive processing is the unconscious awareness of sensations coming from muscles and joints.
Perceptual Motor skills depend upon a sound sensory processing base. These skills include balance, bilateral coordination, body awareness, directionality, mid-line crossing, motor planning, and spatial awareness. Visual Processing is the interpretation and response to information received through the eyes. Some essential visual processing skills are acuity, binocularity, and visual tracking.
Primary Therapies
Occupational Therapy using a Sensory Integration Framework (OT-SI)
Professional: Occupational Therapist (OT)
The ideal OT is one who has received additional postgraduate training in sensory integration theory and treatment. The specific goals of occupational therapy using a (OT-SI) framework are to improve the person's social participation, self-esteem, self-regulation and sensory-motor abilities.
Under the guidance of a therapist, the child actively takes in movement and touch information in playful, meaningful, and natural ways that help his brain modulate these fundamental neural messages.
Physical Therapy
Professional: Physical Therapist
Is a therapy that is devoted to improving an individual's physical abilities. It involves activities that strengthen the child's muscular control and motor coordination, especially in large muscles.
Secondary Therapies (in alphabetical order)
Auditory Therapy, or Auditory Training
Professional: Audiologist, Speech-and-Language Therapist, Occupational Therapist, or other qualified specialist
A method of sound stimulation designed to improve a person's listening and communicative skills, learning capabilities, motor coordination, body awareness and self-esteem. Various methods employ the use of special headphones. Over several days, the child listens passively to music and voices filtered through the headphones and then participates in active voice work, such as repeating sounds, reading aloud, and conversing. therapy helps the ear to attend to and discriminate among sounds, the vestibular system to integrate sensory messages of balance and posture, and the person to become more focused, centered, and organized. The Therapeutic Listening Program, designed by Sheila Frick, OTR/L, is an excellent home program that is supervised by a therapist while the child is receiving services. See: http://www.tomatis.net/, or http://www.vitallinks.net/.
Brain Gym
Professional: Licensed Brain Gym Practitioner
The Brain Gym system is a set of 26 specific movements developed by Paul Dennison PHD, based on research in Educational Kinesiology. Educational Kinesiology studies education, child development, and physical movement of the human body as it relates to learning and expression skills. The system readies the body to learn by integrating visual, auditory, and kinesthetic functioning. It stimulates the nervous system equally in all brain parts, minimized one-sided brain reactions, and strengthens neural pathways between the two hemispheres. The activities effect rapid and often dramtic improvements in concentration, memory, reading, writing, organizing, listening, physical coordination, and more. See http://www.braingym.org/.
Chiropractic
Professional: Chiropractor
Chiropractic is the philosophy, art and science of detecting and correcting subluxation in the human body. Subluxation is a partial dislocation or abnormal movement of a bone in a joint. Chiropractic helps children with SPD by specifically addressing the structure and function of the nerves, muscles, and joints controlling posture and movement that influence our ability to interact with our environment. http://www.icpa4kids.com/ or www.chiroweb.com/find/children.html.
CranioSacral Therapy (CST)
Professional: Occupational Therapist, Physical Therapist, Chiropractor, Osteopath, Massage Therapist, or other Registered Craniosacral Practitioner (RCST)
CST is a gentle method of evaluating and enhancing the function of the craniosacral system (the membranes and cerebrospinal fluid that protect the brain and spinal cord). CST involves light touch manipulation of the bones in the skull, sacrum and coccyx to correct an imbalance that can adversely affect the development of the brain and spinal cord and can result in sensory, motor, and neurological dysfunction. Developed by Dr. John Upledger, CST is used by a variety of health care professionals. Contact: The Upledger Institute, http://www.upledger.com/ or http://www.craniosacraltherapy.org/.
Hippotherapy (therapy with a horse)
Professional: Certified Instructor
Hippotherapy means "treatment with the help of a horse." Occupational, physical and speech therapists use the horse as a modality to improve the posture, movement, neuro-motor function and sensory processing of people with disabilities. The movement of the horse, with traditional therapy intervention, influences muscle tone, encourages muscle action, and improves vestibular reactions, sensori-motor integration, and mid-line postural control. Contact North American Riding for the Handicapped Association, http://www.narha.org/ or Center for Equine Facilitated Therapy, http://www.nceft.org/, or Equine Assisted Growth and Learning Association, http://www.eagala.org/
Interactive Metronome
Professional: OT, SLP, PT, ATC, Educator, Psychiatrist, Neurologist, Psychologist, Chiropractic, Rehabilitation Professional or other Medical, and Mental Health Professional
Interactive metronome (IM) was developed in the early 1990s and is used to help children (and adults) with learning and developmental disorders, including auditory and sensory processing disorders, dyslexia and other learning disorders, autism spectrum disorders, attention deficit-hyperactivity disorder, Tourette's syndrome, stroke, traumatic brain injury, and more. IM is a neuro-motor assessment and treatment tool used in therapy to improve the neurological processes of motor planning and sequencing. Motor planning and sequencing are central to human activity. From The coordinated movements needed to walk, to the order of words in a sentence, planning and sequencing are critical to efficient human function. Interactive metronome improves motor planning and sequencing by using neuro-sensory and neuro-motor exercises developed to improve the brain's inherent ability to repair or remodel itself through a process called neuroplasticity. See http://www.interactivemetronome.com/.
Nutritional Therapy, Dietary Intervention
Professional: Nutritionist
Good nutrition is essential for development, efficient maintenance and functioning, optimum activity level, and resistance to infection and disease. A nutritionist can help a person with nutritional deficiencies achieve balance in carbohydrates, fats, protein, vitamins, minerals, and water. Contact: Autism Netowrk for Dietary Intervention, http://www.autismndi.com/.
Perceptual Motor Therapy
Professional: Perceptual Motor Therapist
Perceptual motor therapy provides integrated movement experiences that remediate gross motor, fine motor, and visual perception problems. Activities, including sensory input techniques, stimulate left and right-brain communication to help the child interpret incoming information to the nervous system. Goals are to improve visual motor perception, develop more mature patterns of response to specific stimuli, improve motor skills and balance, and stimulate alternate routes to memory and sequencing for those children who do not respond to the methods taught in the conventional classroom. Contact: Kids Moving Co., http://www.kidsmovingco.com/.
Psychotherapy
Professional: Psychotherapy is sometimes appropriate, particularly if the child has behavior or self-image problems or is depressed. (Psychotherapy deals with the effects of SI disorder, but not the underlying causes.) Psychotherapies include behavioral therapy, to help the child deal with problematic symptoms and behaviors; family therapy to help the child, parents and siblings become a healthier unit; and play therapy, to promote the child's social-emotional development. See http://www.floortime.org/
Speech and Language Therapy
Professional: Speech / Language Pathologist (SLP)
Speech-language therapy includes activities designed to meet specific goals for the child. The child may need help with speech skills, such as pronouncing "L", "K", or "SH" sounds; monitoring the pitch of his voice; and strengthening oral-motor control in the muscles of his mouth. He may also benefit from activities designed to expand his language skills, such as retelling stories, conversing, and playing games to develop memory and vocabulary. As many children with SPD are picky eaters, therapy with a a speech pathologist trained in oral-motor and feeding issues may be very helpful. Indeed, when the child receives co-treatment simultaneously from and occupational therapist trained in this area, optimal benefits of getting in the mouth occur. Contact American Speech-Language-Hearing Association (ASHA), http://www.asha.org/.
Vision Therapy, or Vistion Training (VT)
Professional: Developmental (or Behavioral) Optometrist
Vision therapy, or optometric visual training, helps the person improve visual skills and can also prevent learning-related visual problems. Along with Lenses or prisms, VT helps the child integrate visual information with input from other senses, such as hearing, touching, and moving. A developmental optometrist provides sensory-motor and educational activities that strengthen eye-motor control, eye-hand coordination and depth perception, and help develop visual perception. Contact http://www.optometrists.org/; or Optometric Extension Program Foundation: http://www.oepf.org/, or Parents Active for Vision Education; http://www.pavevison.org/.
Wednesday, April 27, 2011
Helpful Reading Material
(Contributed by Angela, mom to Jenna)
I am new to Duplication Cares and to posting to the blog so please forgive me if any of these recommendations are repeats!
I am new to Duplication Cares and to posting to the blog so please forgive me if any of these recommendations are repeats!
First, as an introduction, my daughter, Jenna was recently diagnosed with the 7q11.23 Duplication Syndrome. She is already 13 so our worries are slowly turning from "figuring her out" to acceptance and thinking about her adult future.
So, for the reason I am writing: I would like to recommend two books that I recently read that I could identify with in many ways.
The first is Laughing Allegra: The Inspiring Story of a Mother's Struggle and Triumph Raising a Daughter with Learning Disabilities. It is written by the great granddaughter of Henry Ford, Anne Ford, and it's all about her journey from kindergarten through college with her learning disabled daughter. As the title indicates, it truly is an inspiring story. She stays with her daughter advocating for her every step of the way and somehow they keep their sense of humor through it all. Allegra may not be exactly like our kids as she is extremely social, verbal and extroverted, but she does struggle with making friends and the pain of social isolation. I found myself pretty emotional while I was reading, but at the same time the book offers concrete advice for us as well. I don't think Allegra has any diagnosis other than "learning disability", but she was raised before all of the improvements in genetics testing! I think she is currently around 36 and living independently.
Also, I am currently reading another book by Anne Ford, On Their Own, Creating an Independent Future for Your Adult Child With Learning Disabilities and ADHD. As we know, most disabilities do not disappear when our children become adults so this book gives us a roadmap for getting them up and out and then what to realistically expect when they get there!
Both books are loving tributes to Anne's daughter, Allegra.
Tuesday, April 26, 2011
Social Stories
Recently, I wrote a very long post on Snugglebug's anxiety. (http://felinidelarosa.blogspot.com/2011/04/anxiety-attacks.html)
We have started two things that I hope to impact his anxiety. Only time will tell if they work.
The first thing we started was the use of social stories. Social stories are short, descriptive stories with pictures to help the child visualize an event and explain what is going to happen. For Easter, I made a social story using scrapbook graphics. I love digital scrap booking so I used the same concept for the social story.
We then read the story about hunting Easter eggs, what to do with the eggs, and what to do when we saw our friends. Snugglebug loved it and even asked me to read it after the egg hunt.
Once at the egg hunt, he was excited. There was no visit from the evil anxiety until the kids began to crowd into the starting area before the egg hunt. I could feel the tension increasing as the kids crowded around him and began invading his personal space (personal space is a whole other post). I whispered the words from the story in his ear, "We are happy to see our friends." He began to relax and seconds later the whistle signaling the craziness sounded. Snugglebug took his time gathering eggs and enjoyed every minute of the ten minute egg hunt. He walked away with a dozen and a half eggs. I walked away with a smile on my face. I don't know if we can attribute the social story to helping him to deal with his anxiety but it was enough that I am now making social stories for other upcoming events.
(For those interested in social stories, there are several websites that were very helpful. I'll post them at the end of this article.)
The second addition to our anxiety fighting battle is a visual scheduling system for each day and week. Using Picture Exhange Cards with Velcro on the back, we attach the cards to a laminated piece of card stock. We list the events of the next day with the PECS, and walk through those events the night before and again the next morning. We have just started this system so I hope it works as well as I have imagined.
We also have a laminated weekly calendar with the days of the week. We check off each day of the week and if there is a special event we mark it on the calendar so he can see it coming. He seems to like it.
I'll let you know if all this works to help curb his anxiety. I have no doubts that anxiety will still stage an unwarranted attack, but hopefully those attacks will be less in number.
~ Cynda
We have started two things that I hope to impact his anxiety. Only time will tell if they work.
The first thing we started was the use of social stories. Social stories are short, descriptive stories with pictures to help the child visualize an event and explain what is going to happen. For Easter, I made a social story using scrapbook graphics. I love digital scrap booking so I used the same concept for the social story.
We then read the story about hunting Easter eggs, what to do with the eggs, and what to do when we saw our friends. Snugglebug loved it and even asked me to read it after the egg hunt.
Once at the egg hunt, he was excited. There was no visit from the evil anxiety until the kids began to crowd into the starting area before the egg hunt. I could feel the tension increasing as the kids crowded around him and began invading his personal space (personal space is a whole other post). I whispered the words from the story in his ear, "We are happy to see our friends." He began to relax and seconds later the whistle signaling the craziness sounded. Snugglebug took his time gathering eggs and enjoyed every minute of the ten minute egg hunt. He walked away with a dozen and a half eggs. I walked away with a smile on my face. I don't know if we can attribute the social story to helping him to deal with his anxiety but it was enough that I am now making social stories for other upcoming events.
(For those interested in social stories, there are several websites that were very helpful. I'll post them at the end of this article.)
The second addition to our anxiety fighting battle is a visual scheduling system for each day and week. Using Picture Exhange Cards with Velcro on the back, we attach the cards to a laminated piece of card stock. We list the events of the next day with the PECS, and walk through those events the night before and again the next morning. We have just started this system so I hope it works as well as I have imagined.
We also have a laminated weekly calendar with the days of the week. We check off each day of the week and if there is a special event we mark it on the calendar so he can see it coming. He seems to like it.
I'll let you know if all this works to help curb his anxiety. I have no doubts that anxiety will still stage an unwarranted attack, but hopefully those attacks will be less in number.
~ Cynda
Wednesday, April 20, 2011
What are Motor Speech Disorders
What Are Motor Speech Disorders?
Myra Huffman1, Shelley Velleman2
Most people who have been diagnosed with 7q11.23 duplication syndrome experience some kind of oral-motor and/or motor speech difficulties. What does that mean? “Motor speech disorder” is a term used by speech-language pathologists, physicians, and researchers for classifying a group of speech sound production disorders. As a group, these disorders result from difficulty with movement control and involve nervous system activity occurring before or during the act of speaking. Motor speech disorders are usually classified into two subgroups, apraxia of speech and the dysarthrias.
The general classification dysarthria is given for various speech disorders that disrupt the ability to execute (carry out) speech movements appropriately. They are due to difficulties with controlling the muscles. The movement difficulty can affect one or several aspects of speech production including a) speech breathing, b) voice production, c) prosody, the melody and rhythm of speech, d) resonance such as nasality, and/or, e) clear accurate productions of speech sounds. Typically, the speech-language pathologist will suspect dysarthria when a person's speech is unclear and distorted. A full oral-motor and speech-language assessment will identify possible causes and other symptoms. Careful attention will be given to the state of the speech muscles during the act of speaking. Specific symptoms might include poor sensory awareness in the mouth area, weaker than necessary speech movements (for example, reduced strength and endurance of the tongue), restricted range of movement of the speech structures, or slower than expected speech production. Typically, dysarthric speech is consistent; the person sounds similarly unclear in different situations.
Apraxia of speech is the term used for a speech disorder that reduces the ability to mentally plan and program the voluntary and complex movements needed for speaking. Motor planning and programming occur in the brain before someone actually speaks a particular message. The brain has to send the right commands, in the right order, for a) efficiently sequencing the sounds and syllables in a message, and b) programming the message in terms of overall rhythm, emphasis, and speaking rate. Because motor planning and programming occur before speech is produced and are affected by the situation, speech-language pathologists suspect apraxia of speech only after carefully observing the quality of speech in several kinds of speaking tasks. It is important to understand that muscle weakness is not a core feature of apraxia (although it could be present in the speech of some individuals who have both dysarthria and apraxia). The term “childhood apraxia of speech” (CAS) is used when these symptoms begin in childhood.
Researchers have agreed that the three core features of CAS include; a) inconsistent speech errors when a word is repeated, b) choppy speech, and c) inappropriate prosody, especially poor control of stressing syllables. Other behaviors suggestive of CAS include, a) mistakes on vowel sounds, b) differences between speech that is produced purposefully compared to that which is produced automatically (such as well-known songs), c) difficulty with tasks requiring verbal imitation, d) difficulty including all the parts of the word (e.g., the final consonant, the blends, etc.) and e) not reaching speech milestones in the usual order (e.g., learning supposedly more difficult sounds before supposedly easier sounds). Apraxic speech often sounds effortful, choppy, slow, and flat.
After thoroughly considering speech history and current behavior, the speech-language pathologist will make an appropriate diagnosis so that strategies chosen for therapy will be the most effective and efficient. Speech therapy for both conditions includes what is known from motor learning research. This research tells us that learning movements requires focused attention, certain kinds of practice, appropriate feedback, flexible use of new skills, and the ability to remember and apply what has been learned in new words or new situations. More contemporary approaches have also included what is known from cognitive learning research. This research suggests the importance of recognizing the learner as an active problem solver, making sure that learning material is meaningful and useful, providing information to more than one sense at once (for example, encouraging the person to watch and listen), and including the learner's family in the treatment program. In the beginning phase of therapy with very young children, the use of alternate communication strategies can help decrease frustration while the child learns to talk. Two forms of alternate communication are manual sign language and computerized speaking devices.
Overall, we learn what we practice. Therefore, to improve speech the person must practice speech; simple mouth exercises like blowing and chewing will not improve speech. Because speech is typically very difficult for children with motor speech disorders, practicing at home is very useful. You can also provide something that your child desperately needs and will rarely get in school or speech therapy: fun breaks from that hard work and loving opportunities to communicate without being judged.
1Myra Huffman, M.S., CCC-SLP, Department of Psychological and Brain Sciences, University of Louisville, Louisville, KY
2Shelley Velleman, Ph.D., CCC-SLP, Communication Disorders, University of Massachusetts, Amherst, MA
Tuesday, April 19, 2011
Curbing Anxiety Using Social Stories, Cues, and Pictures
Question:
Does anyone use social stories with their kiddos to prepare them for events and new situations? Often times, new situations and the unexpected will cause anxiety and lead to behavior problems. What are some ideas that might help our children process their anxiety.
Answers:
In most cases, our children crave routine and want to know what is happening next. If something is different than what they expect, it may lead to a meltdown. One way to help our children process their anxiety is through schedules or picture charts.
Idea 1:
Families have used the Picture Exchange System (PECS) mostly to assist in the language but several parents have used them for curbing anxiety. A school or therapist should be able to assist and print out pictures for you. There is a program with thousands of pictures to select from in order to find something that is just right. It is best to laminate them because they will gets lots of use. There are Velcro books and short pads (which looks like a ruler) that allow each card to be displayed and in front of the child.
A parent also bought a magnetic chore board and made it into a magnetic schedule at home. The family would talk about the next day and where the child would go and what they would do. Sometimes the parent would find them huddled in a corner studying their schedule in order to process their anxiety. The child would also prompt the parent to check their schedule. This worked well from 3 years on because the child's preschool had a similar picture schedule in place. The family made individualized magnets (from the computer and cheap round magnets with adhesive backs); The pictures were also laminated for repeat use.
Some therapists put Velcro on a piece of cardboard and then create different pictures to show the types of activities they will work on in a day. The child can then take them off one by one when they finish. Individual pictures are great in case something changes in the routine. It provides a way to process the change before the event actually happens - which will hopefully lessen or eliminate a meltdown.
Try this site if you need pictures:
Does anyone use social stories with their kiddos to prepare them for events and new situations? Often times, new situations and the unexpected will cause anxiety and lead to behavior problems. What are some ideas that might help our children process their anxiety.
Answers:
In most cases, our children crave routine and want to know what is happening next. If something is different than what they expect, it may lead to a meltdown. One way to help our children process their anxiety is through schedules or picture charts.
Idea 1:
Families have used the Picture Exchange System (PECS) mostly to assist in the language but several parents have used them for curbing anxiety. A school or therapist should be able to assist and print out pictures for you. There is a program with thousands of pictures to select from in order to find something that is just right. It is best to laminate them because they will gets lots of use. There are Velcro books and short pads (which looks like a ruler) that allow each card to be displayed and in front of the child.
You are also able to use the cards to make a daily (kid friendly) calendar for your child to view. You can also take actual photos for them (to use like the PECS cards) and writing the single word below. Example: take a photo of school, then label it school so they also begin to learn the word.
Idea 2:
Parents also rely on a check list format when their child is going to have a new experience. It can work like a chore sheet. The list could contain a picture reference on the left (with some words to remind the parent of what that step really was) and then a blank box to the right for the child to check off as it is completed. At the end, there could be a treat like ice cream or play in the park. Parents have used this for activities like the dentist, therapy, homework, or even for something simple like brushing teeth or getting ready for school or bed.
For example, the list could include things like:
--sit in cool chair
--put on bib to protect clothes
--let them count teeth with mirror
--polish
--floss
--get picture taken
--done!
One parent mentioned they would always at least attempt each step and the child would get a star/smiley face for those attempts. For two visits, maybe they only got the polish brush out and the child touched it with their finger. The child would still get a star for whatever they could do in that step. At the next visit, maybe they would only get four teeth done but couldn't sit for the rest; floss maybe 1-2 places; etc. At the child's last 2-3 visits, they were able to complete all of it and the checklist stayed at home. The child still had anxiety, but the checklist really helped them know what was next. This process began when the child was 3-4 years of age.
--sit in cool chair
--put on bib to protect clothes
--let them count teeth with mirror
--polish
--floss
--get picture taken
--done!
One parent mentioned they would always at least attempt each step and the child would get a star/smiley face for those attempts. For two visits, maybe they only got the polish brush out and the child touched it with their finger. The child would still get a star for whatever they could do in that step. At the next visit, maybe they would only get four teeth done but couldn't sit for the rest; floss maybe 1-2 places; etc. At the child's last 2-3 visits, they were able to complete all of it and the checklist stayed at home. The child still had anxiety, but the checklist really helped them know what was next. This process began when the child was 3-4 years of age.
A parent also bought a magnetic chore board and made it into a magnetic schedule at home. The family would talk about the next day and where the child would go and what they would do. Sometimes the parent would find them huddled in a corner studying their schedule in order to process their anxiety. The child would also prompt the parent to check their schedule. This worked well from 3 years on because the child's preschool had a similar picture schedule in place. The family made individualized magnets (from the computer and cheap round magnets with adhesive backs); The pictures were also laminated for repeat use.
Idea 3:
Our children are very visual people. Below is a good site that you can "copy"" and paste the pictures. They have pictures for morning routines, school, etc. You can also search on the Internet for "morning routine" or something similar for the pictures you need. Some therapists put Velcro on a piece of cardboard and then create different pictures to show the types of activities they will work on in a day. The child can then take them off one by one when they finish. Individual pictures are great in case something changes in the routine. It provides a way to process the change before the event actually happens - which will hopefully lessen or eliminate a meltdown.
Try this site if you need pictures:
Monday, April 18, 2011
Story Cubes
Most 7q11.23 Duplication children find expressive speech difficult. They often times know what they want to say, but have difficulty articulating their thoughts. As more language ability is acquired, therapy continues to be essential. Therapy may shift from an articulation based therapy to sessions focusing more on expressing complex thoughts, feelings, social stories, and expressive writing.
One tool that has proven to be beneficial for our son in clinical and home therapy is a simple game of Rory's Story Cubes. http://www.storycubes.com/. At the time of this post, there are two sets of die available. One has iconic images and the other contains actions.
When I read about this game for typical children in the newspaper, I immediately knew it would make a great therapy game. The sets are inexpensive and great for therapy groups or families. The family / kids shake the die and then tell a story based upon the pictures on the dice. One person may play, or participants may take turns telling portions of the story. My son enjoys making the stories silly. By the time we are done, everyone is laughing.
In the past, my son would become very frustrated with how difficult it was to come up with writing topics for homework, social stories, etc. With the dice game, the pictures are cues and help him fill in the blanks. They also can be used to help him identify the parts of a story, characters, plot, etc. Again, a great therapy tool for speech, social skills, and writing.
We have shown this game to all of our therapists, and they have all purchased the game to use in their practices. It is that great. The best part is that the game only costs a few dollars and can be ordered
online. I believe they also have an iPhone app.
Sunday, April 10, 2011
Family Newsletter!
Check your email--the newest 7q Dupe Group family newsletter should be arriving this week!
Friday, July 10, 2009
Return to Adam's Camp?
We met with our case coordinator last night and are considering a return to Adam's Camp in August 2010. As many of you know, we had a great experience at Adam's Camp in 2008. There was so much improvement that we didn't qualify for services within 4 months of returning and so we could not return this year. Now, we see that while we did have great improvement, it was underestimated what kind of support we would need when transitioning to a preschool. We have again received approval for services and wish to return to camp if we can.
If anyone would like information on this camp, please let me know!
If anyone would like information on this camp, please let me know!
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