Ok, in keeping with my last post, I am focusing on helping to educate parents about their rights, responsibilities, and options with regard to ABA. I have A LOT to say on this topic, so I'm going to try and break things down into smaller topics.
Today I want to start by familiarizing parents with the certifying board for BCBAs. This Board is the BACB ( http://www.bacb.com/ ) and is widely recognized as THE credentialing agency in the field of Behavior Analytics as related to autism and other developmental disorders.
The BACB has developed a set of educational and experience criteria that professionals seeking certification with this agency must meet or exceed for eligibility. They have also developed a standard code of ethical practices that professionals using the BCBA and BCaBA designations must agree to adhere to, and to which facilities desiring credibility in this field will also adhere. If your child is enrolled in any kind of paid program using BCBAs and the principals of ABA, its likely that somewhere in the paperwork your provider mentions their adherence to these guidelines.
The BACB lists these guidelines on their website for the public to easily access. I believe it is a parent or guardian's responsibility to know what these guidelines are in order to ensure that they are actually being adhered to. The guidelines can be found here . If your BCBA doesn't uphold these guidelines the BACB will take and handle complaints about breach of their ethical guidelines. Information about complaints can be found here .
It's not easy reading, but it's straightforward enough and it is essential to know what your BCBA is supposed to be doing and not doing, in order to ensure that you are receiving quality services and that there is the best chance for efficacy in the program being delivered.
There are several key points in these guidelines that I feel compelled to address specifically. Section "1.04 Integrity" subsection (a), section "3.02 Functional Assessment", Section "3.05 Describing Program Objectives" section "4.0 The Behavior Analyst and the Individual Behavior Change Program" section "4.04 Approving Interventions" section "4.09 Program Modification Consent"
These sections sum up key principals of ABA that all parents should be aware of, insist on and monitor continuously. The nature of ABA is behavior modification, and these principals are used with children on the Autism spectrum to decrease problem behaviors, increase the occurrence of desirable behavior, and teach functional and/or academic skills. Used incorrectly the results can be disastrous and are potentially harmful to the child.
First and foremost, before any therapy can begin to address any behavior, positive or negative, observations and assessments have to be performed. If the goal is to decrease a problem behavior, a functional assessment must be done first to determine the reason behind the child's use of the behavior. Without this information the behavior cannot appropriately be addressed. I mean, how can you stop a child from engaging in a behavior when you don't know why the child is doing it in the first place? This functional assessment is vital to the child's well being. Without it a child can potentially face punishment consequences for a behavior that is based in fear or pain and should be handled completely differently.
This leads to several of the other sections regarding consent. The BCBA should define the objectives of any interventions. Many times there are multiple protocols are being used in a therapy program, and each should be explained and defined for the parents and the therapists providing the one to one contact with the child. The BCBA is obligated to not just explain what he wants to do and how he wants to do it, but he is also obligated to get your written consent for treatment procedures and if the procedures change, he is obligated to tell you why they changed and again get your consent to the proposed changes. YOU are in control of your child's therapy program, not the BCBA. That person is a consultant. You know what you want for your child, you know which behaviors need to be addressed and what goals you want made priorities. If you don't want your child to learn block design because she's 11 and hates blocks, then you have the right to say no to that proposed goal. If you aren't bothered by your child's self-soothing vocalizations and you think they serve a purpose that your child needs, then the BCBA cannot force you to allow modification in that area. The BCBA is there to help you help your child. The things that you decide are priorities are the things that the BCBA should design protocols to address. If you feel overwhelmed and don't know where to start, the BCBA should make suggestions based on his observations and assessments, but ultimately those are just suggestions until you give your consent for them to be implemented.
And last, if your BCBA tells you something will be implemented, make sure it is. If you revoke permission for a protocol or change your mind regarding goals, that needs to be respected and honored immediately! Your BCBA is supposed to provide follow through, follow up and not make promises or commitments he cannot keep. Programs are supposed to be fluid and appropriate and time wasting accomplishes neither of those things. If you are constantly chasing your BCBA to provide things that were promised or to act on commitments made, you need to reconsider your BCBA. Lack of follow through or breaking commitments is in violation of the standards the BCBA is supposed to uphold.
ABA is an incredibly effective therapeutic behavior intervention, but it is critical that parents understand the obligations and responsibilities of the BCBA and the objectives of the program designed. Parents must be active participants in their child's ABA program in order to provide consistency along all the environments that the child encounters. A program is NOT effective if the child can only perform successfully with a therapist in a facility or in one room in your home. Effectiveness is measured in generalizing behavior among multiple teachers and authority figures and many environments. This can only happen if the parents are involved. ABA is not for the faint of heart. It is consuming, it requires commitment from the family, the parents, and all other specialists that the child encounters regularly (public school teachers, speech therapists etc). But provided properly, it is a life-changing intervention for our children.
Thursday, May 9, 2013
Thursday, April 25, 2013
ABA information and Quality program criteria
My concerns stem from my own personal experiences as well as the fact that with emerging insurance coverage for autism treatments, which focus on coverage for ABA primarily, parents are now finding themselves starting treatment or enrolling in facilities without truly understanding the way ABA works, or even what it is. That was my experience. My son's early interventionist enrolled him in a then-new ABA program that Medicaid was funding. When my son's number was drawn and she told me he would be getting services, I didn't have a clue what she was talking about. I read about ABA and did research, but it was still a very abstract kind of idea since I had never seen or experienced it in action.
When I chose a provider and got through assessments the providers BCBAs and BCaBAs went right along and wrote treatment plans, decided on goals, implemented behavior interventions etc, without including me. The further it went the more lost and confused I felt, since I wasn't being included or trained on the principles. Therapy would go great and then the therapists would leave and I was left to struggle with my son's typical behaviors and our daily routine, which of course included lots of stress and feeling overwhelmed. When I asked to be trained by the provider, I was told no. That chaffed me! How could they call a therapy program a success when it was only good if there were therapists present? When the therapists left, so did all the knowledge and interventions. I researched the foundational documents of the waiver program and found a section that stated the provider was REQUIRED to train and include families and that parents were REQUIRED to participate in team meetings and ongoing training.
When I brought this to their attention they still tried to limit my involvement. I finally told them "We have a maximum of 3 years on this program. If we can't continue privately, this is it for us. I need to get as much out of these years as possible because in the end, you will leave and move on to other clients and I will have the responsibility of caring for my son for the rest of his life." My BCaBA relented and trained me and I have been using ABA principles, procedures and behavior interventions ever since, in every aspect of our lives. Token boards, cost response consequences, social stories, errorless teaching procedures, behavior protocols for reducing problem behaviors, differential reinforcement, over-correction procedures, we tried it all during those 3 years, in the years of private therapy since then and all of our personal time without therapy as well (home-schooling, vacations, community events).
My son is currently enrolled in a fairly new program 4 days a week, and we have the tools and knowledge to coordinate ideas and interventions between the facility and home consistently. We have brought ideas to the provider that they use for not just our son but for other children as well, and they have implemented interventions that we continue and build on at home. It's not the ideal situation yet, there have been growing pains and I think it will be a while before the facility is all it can be, but its a good place and worth giving it more time as they continue to develop.
One thing that has fallen through the cracks though, is parent training. I think because it's not home based the provider simply forgets that parents need training and guidance to understand and be aware of the interventions being used with their children and to be able to consistently use the same interventions at home. A program isn't successful if success and compliance is dependent on being in a facility with a trained therapist. It is only successful if the behavior interventions can be generalized to all facets of the child's life, all environments and novel "therapists" (teachers, PCAs, parents, siblings etc). Sadly however, many of the parents don't know what they should be getting, what they are missing or how much better it can be. ABA is not a drop off, leave, pick your kid up at the end of the day type of program! Yet parents with new diagnoses and young children don't understand this. I probably would have done the same thing if I hadn't started with a home program, truth be told. (which leads me to another tangent about my feelings on pre-schoolers in facility settings as opposed to home programs - that's a blog for another day!)
Recently I was contacted by a BCBA about these very issues who shared with me some materials she has developed for these same reasons. Below you will find some wonderful information about what a quality ABA program looks like and what parents should expect and get out of it. She shares my beliefs that parents need to be informed, trained and involved and the timing of her contact couldn't have been better. This has been on my mind for the past several months and her email was just the catalyst I needed to get started.
Please check out her website for more great information and training videos, and if you are in the Charleston, SC area and in need of services, I would highly recommend a phone call to her! She seems passionate, knowledgeable and ethical, everything you need in a provider!!
Zahra Haji, MS, BCBA
http://www.abxsolutions.org/
Tuesday, January 8, 2013
Welcome to the Club - reposting with credit...
Re-posting a poignant blog post that I read this morning... It brought me to tears, I could have written this, Heck, I SHOULD have written this...
*The author of this post is Jess, who can be found at Diary of a Mom http://adiaryofamom.wordpress.com/>. There she writes about life with her husband Luau* and their beautiful daughters – nine and-a-half year-old Katie*, an utterly fabulous typically a-typical ten-year-old, and eight-year-old, Brooke*, a loving, talented, hilarious second grader who has autism.
This was originally posted here http://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/>.*
*The author of this post is Jess, who can be found at Diary of a Mom http://adiaryofamom.wordpress.com/>. There she writes about life with her husband Luau* and their beautiful daughters – nine and-a-half year-old Katie*, an utterly fabulous typically a-typical ten-year-old, and eight-year-old, Brooke*, a loving, talented, hilarious second grader who has autism.
This was originally posted here http://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/>.*
My dear friend,
I am so sorry for your pain.
Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.
I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.
I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.
I am so sorry for your pain.
Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.
I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.
I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.
I never would have wanted to pass it on to
you, my love. I remember so well suffocating under the weight of it, struggling
for breath, fighting to throw it off while wrapping myself in its awful warmth,
clutching its worn edges for dear life.
I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it
on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.
I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.
You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she
needs you to be. You do. I promise. You will.
When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all-encompassing love that you think couldn’t possibly leave room
for any other. But it did.
When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.
That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.
You are so much stronger than you think you are. Trust me. I know you.
Hell, I am you.
You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.
You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. *Dude, that’s retarded.* Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.
You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.
You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.
You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.
You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.
You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.
A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.
You will question your faith. Or find it. Maybe both.
You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.
You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.
You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will
both be better for it.
You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.
You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the
floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all
of it.
You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.
You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.
You will think you can’t handle it. You will be wrong.
This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.
You will be OK.
You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her
Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.
You will be OK.
And I will be here for you. Every step of the way.
With love,
Jess
I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it
on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.
I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.
You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she
needs you to be. You do. I promise. You will.
When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all-encompassing love that you think couldn’t possibly leave room
for any other. But it did.
When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.
That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.
You are so much stronger than you think you are. Trust me. I know you.
Hell, I am you.
You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.
You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. *Dude, that’s retarded.* Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.
You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.
You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.
You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.
You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.
You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.
A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.
You will question your faith. Or find it. Maybe both.
You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.
You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.
You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will
both be better for it.
You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.
You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the
floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all
of it.
You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.
You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.
You will think you can’t handle it. You will be wrong.
This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.
You will be OK.
You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her
Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.
You will be OK.
And I will be here for you. Every step of the way.
With love,
Jess
Thursday, September 13, 2012
Support the Autism Academy of SC - VOTE today!!
Hi Friends :)
As many of you know, my son Dylan has autism and attends the Autism Academy of SC. The founder of the school is the same amazing woman who also wrote Ryan's Law which mandates insurance coverage for autism treatment in SC, Lorri Unumb. Lorri is also an attorney and works for Autism Speaks. She travels around the country helping write and implement Autism Legislation. Currently there are 32 States with passed Autism Reform laws and more in the process.
This is an amazing school run and staffed by incredibly dedicated and loving staff, please take 60 seconds out of your day to support this worthy cause!
http://www.nascar.com/promos/bettyjanefrance/index.html
The Betty Jane France Humanitarian Award honors the passionate commitment Betty Jane France has demonstrated with her charitable works and community efforts. France has been a pioneer of charitable works in the NASCAR community and serves as Chairwoman and founder of The NASCAR Foundation.
The winner of the 2012 Betty Jane France Humanitarian Award will receive a $100,000 donation from The NASCAR Foundation to their children’s charity of choice and a 2013 Toyota Camry Hybrid from Toyota, while each of the remaining three finalists will receive a $25,000 donation to their children’s charity of choice. All finalists will attend NASCAR Sprint Cup Series Champion’s Week where the winner will be announced.
As many of you know, my son Dylan has autism and attends the Autism Academy of SC. The founder of the school is the same amazing woman who also wrote Ryan's Law which mandates insurance coverage for autism treatment in SC, Lorri Unumb. Lorri is also an attorney and works for Autism Speaks. She travels around the country helping write and implement Autism Legislation. Currently there are 32 States with passed Autism Reform laws and more in the process.
Lorri is one of the top 4 nominees for the Betty Jane France Humanitarian Award and if she wins, the Academy will receive a $100,000 award! This award will help the Academy continue to provide affordable, effective treatment for children with autism in the Midlands.
Would you please all visit the link below, watch the video and vote for Lorri? You will have to register to be able to vote, but you can return and
VOTE DAILY through November 29th.Would you please all visit the link below, watch the video and vote for Lorri? You will have to register to be able to vote, but you can return and
This is an amazing school run and staffed by incredibly dedicated and loving staff, please take 60 seconds out of your day to support this worthy cause!
http://www.nascar.com/promos/bettyjanefrance/index.html
The Betty Jane France Humanitarian Award honors the passionate commitment Betty Jane France has demonstrated with her charitable works and community efforts. France has been a pioneer of charitable works in the NASCAR community and serves as Chairwoman and founder of The NASCAR Foundation.
The winner of the 2012 Betty Jane France Humanitarian Award will receive a $100,000 donation from The NASCAR Foundation to their children’s charity of choice and a 2013 Toyota Camry Hybrid from Toyota, while each of the remaining three finalists will receive a $25,000 donation to their children’s charity of choice. All finalists will attend NASCAR Sprint Cup Series Champion’s Week where the winner will be announced.
Wednesday, August 1, 2012
More Respondents Needed for Abuse Survey
If you are a Person with a disability, Parent, Family member, or Professional in the Disabilities field, please take 10 minutes to complete the survey below (link to the survey at the bottom of the message). This is a VERY important survey
regarding abuse of people with disabilities, which is a subject that is high on my list of priorities to be addressed in this field of care and education!
More Respondents Needed for Abuse Survey
Struck by the number of abuse cases against individuals with
disabilities appearing in the media, the Disability and Abuse Project
of Spectrum Institute created a survey on the attitudes, beliefs and
experiences of many demographic groups that have encountered abuse as victims and through their profession. This survey was created to help advocates and professionals better understand what victims are saying about their abuse experiences and how professionals view their experiences with abuse/crime victims.
With over 6,000 respondents and counting, this survey will provide
useful information that can help better serve our community. But the project’s leaders need more respondents to ensure the results are representative. The survey takes about 8 minutes, is completely anonymous, and all results will be published online. Persons with a disability, family members, or a professional in the disability field are welcome to take the survey.
Please share this important survey with your network so that
professionals in our field can learn more about how to prevent abuse and the needs of victims.
Leigh Ann Davis
Project and Information Specialist, The Arc
The Arc 1825 K Street NW, Suite 1200, Washington, DC 20006
Phone: 800.433.5255 | Contact Us
http://www.surveymonkey.com/s/disabilityandabuse
More Respondents Needed for Abuse Survey
Struck by the number of abuse cases against individuals with
disabilities appearing in the media, the Disability and Abuse Project
of Spectrum Institute created a survey on the attitudes, beliefs and
experiences of many demographic groups that have encountered abuse as victims and through their profession. This survey was created to help advocates and professionals better understand what victims are saying about their abuse experiences and how professionals view their experiences with abuse/crime victims.
With over 6,000 respondents and counting, this survey will provide
useful information that can help better serve our community. But the project’s leaders need more respondents to ensure the results are representative. The survey takes about 8 minutes, is completely anonymous, and all results will be published online. Persons with a disability, family members, or a professional in the disability field are welcome to take the survey.
Please share this important survey with your network so that
professionals in our field can learn more about how to prevent abuse and the needs of victims.
Leigh Ann Davis
Project and Information Specialist, The Arc
The Arc 1825 K Street NW, Suite 1200, Washington, DC 20006
Phone: 800.433.5255 | Contact Us
http://www.surveymonkey.com/s/disabilityandabuse
Sunday, June 17, 2012
Happy Father's Day
An extra special Happy Father's Day wish to all the EXTRA SPECIAL special needs dads out there!! Take some time to spoil yourselves a little bit today - eat your favorite foods, take the long way home just to spend some quiet time alone, watch sports all you want, ENJOY it, it's your day and you have definitely earned it!!!
Monday, April 23, 2012
Sharing - a repost that captures the Special Needs Mom
A member of a Facebook group that I belong to for Special Needs parenting posted this on the group page today. I asked if I could re-post and she said it wasn't hers and didn't know where to attribute it. I would like to give credit where credit is due, but I honestly don't know who wrote it or when. However, I was moved by the way the writer echoed my deepest thoughts and feelings and I honestly believe other parents can benefit from reading this if even to just know they aren't alone. With that in mind, I am re-posting and asking if you know who wrote this, please send me a message with the information and I will be sure to give the credit :)
THE MOM IN THE MINIVAN NEXT TO YOURS
I'm a mom like so many others that you know. I am a suburban, minivan-driving Christian mom trying to raise my four kids in a negative world. My three daughters are ages fifteen, nine and two, and my son is six. I homeschool two of my kiddos. I taught elementary school for nine years. See? Like so many of the moms that you know, right?
But not really. My life is so not normal. Because my nine year old daughter struggles with mental illness.
"Issues" I tell myself. I never tell myself "mental illness". But my heart knows the truth.
My sweet daughter was born ten years into our marriage when our first daughter was five. All three of us could not wait to meet this baby girl. My husband was just finishing his doctoral program, and I was leaving my job to be a stay-at-home mom. Our life ahead looked sweet!
When my baby girl finally arrived, we were all over the moon in love with her. She was perfection itself! All 9 lb, 8 oz. of her! She smiled in the hospital, cuddled and snuggled and loved on her mama. I remember holding her against my chest, squeezing her tightly and thinking, This must be what heaven feels like. How could life get any sweeter?
As she grew, things only got better. Discipline with her was easy! I could just look at her and raise my eyebrows, she so wanted to please. She had long, curly blond hair, and she had an amazing vocabulary. She was reading before she turned 3, and we enjoyed trips to the library and the silliness of reading Robert Munsche together. One of my favorite memories of this time with her is of the two of us standing on the sidewalk in October and watching the leaves "dance down the street".
She was so bright that when we started to notice quirkiness, we just thought, "Isn't that cute?" Because it was! And we thought it was further evidence of how very intelligent she was. Really Intelligent=Quirky, right? And we were more than okay with that!
But - then came the temper tantrums if things were not the way they were "supposed" to be. Or if they didn't "feel right". And when I say temper tantrums, I'm not talking about the kind that ended with a nice little "teachable moment" and a spanking or time-out or anything of the sort. I'm talking about temper tantrums that often lasted for hours. Day after day. Tantrums in which she couldn't get control of herself, and we couldn't get control of her, either.
She couldn't stand the way that clothes felt, any clothes, so she was reduced to wearing knit clothes that were several sizes too large. Even then, she would scream and tantrum and stretch those clothes out until they had holes and hanging threads. And forget underwear! Or socks! Or any shoes except maybe Crocs. All of this did a real number on her.
I remember her asking me if she was the worst kid in the neighborhood.
Her pediatrician suggested therapy. Then she suggested an appointment with a developmental pediatrician--the wait was nine months long! All the while my daughter (and our whole family) was suffering. I found another doctor who had left "the system", and he suggested PROZAC for my 6 year old daughter. I politely declined on my way out the door.
We started occupational therapy, and I started hearing terms like, "Autistic Spectrum Disorders", "Pervasive Developmental Disorder", etc. My heart broke a little more every day. My amazing, lovely gift from God was slipping away from me, and I couldn't stop it from happening.
Then my kind-hearted daughter started becoming aggressive. It's hard to blame her. She was in agony, and her Daddy and I - the people who were supposed to take care of her no matter what - were powerless to do anything about it!
I was determined that we could "lick" this thing without medication, but finally, I broke down and took her to a psychiatrist because I was convinced that she was going to hurt herself or someone else if I didn't. My six year old daughter. To a psychiatrist. That was a dark, dark, dark day.
We put my daughter on medication. And not ADHD medication. "Black box warning" medication.
And although it was the last thing that I wanted in theory, I was begging for it by the time we got it. Our family had descended into hell.
Then there were medication changes, side effects (including an extra 20 pounds) and lots of reading for me. We added a gluten-free, cassein-free diet, which made a big difference despite the fact that most medical professionals told me it wouldn't work and wasn't worth the effort. We did a yeast detox that made a HUGE difference. We added lots of supplements. We saw more doctors and had more blood tests.
Mood disorder. Bipolar. Generalized anxiety. OCD. PANDAS. Lyme. Anti-depressants, anti-psychotics, antibiotics, probiotics, enzymes. Leaky gut, inflammation, strep, mycoplasma. And a tonsillectomy, too! I'm sure that I've left out some of the details, but you get the idea.
So this is my life right now.
That sweet life that I thought was waiting for us all? We're so far away from it that it doesn't even show up on my GPS. Except in my heart, where it's always there in the profound sadness of what ought to be, as I constantly search for the way to get it back.
The kids, the husband, the home, the minivan - this was my dream. And sometimes, like when we sit down to dinner, and my little son giggles so hard that he falls out of his chair or my nine year old daughter tells about going out of her way to be kind to a classmate who needs a friend ... at times like that, my heart smiles a warm grin.
But sometimes, my dream is a nightmare.
In addition to the daily struggle against super anxiety, tantrums, sensory processing issues, and hyper-irritability, there's my guilt:
Did I eat something while I was pregnant that caused this? Was it because I didn't ask to get off of bus duty at school, and I breathed all of those diesel fumes? Did I cause this by giving birth to her brother at a vulnerable time for her? Did I miss some sign of illness or allergy when she was an infant? Why did I give her all of those vaccines? Was it because of the way that I parented her as a baby and hugged and kissed on her all of the time, never leaving her with anyone else? Was it because I talked on my cell phone too much while I was pregnant with her? Did I cause this by eating gluten when I was pregnant?
And there's my anger:
How can my pediatrician not know where to send me or what to do??? And then how can he look at me like I'm crazy when I tell him that I don't want him to vaccinate my baby because we don't know what caused this in her big sister? How can doctors lecture me about ineffective diets, avoiding vaccines and trying holistic remedies when they don't have anything else to suggest? Why would people give us grief over feeding our children a special (much healthier, but much more difficult) diet when they know the issues that my daughter has struggled with?
There's alienation from family members who think that they could fix it all with a harder spanking.
There's trying to seem "normal" so that my precious daughter does not experience rejection from other children and adults who do not understand.
There's stress, and loads of it, because there are a million therapies to try, but none of them are free, and most of them come from doctors who aren't even in our state.
And there's exhaustion from trying to reason with my girl when she is not reasonable, discipline her for outburts that are often beyond her control, and trying to prevent my younger children from copying her negative behaviors.
And finally, at the bottom of it all, there is loving my amazing daughter, who deals with more than any child should have to. Loving her in a very tangible way: making sure that she gets her meds, doesn't eat a "forbidden food", goes into her classroom even when her daddy or I have to carry her in so that she doesn't give in to the separation anxiety that can paralyze her. Reminding her that God works all things together for the good of those that love Him.
And searching. There's always more searching until we find the answer for her.
And one more thing:
There's missing my girl.
Someone once asked me how they could help me, as my girl's often-overwhelmed mom. I didn't really know what to say because the answer that comes to mind so easily is, "Give me another hour in the day!" or something equally un-givable. But since then, I've thought about that a lot, and I think the biggest ways that someone can support a mom in my situation are the ways that she can support anyone in a difficult situation.
Pray for my child. And for me and my family. We need His strength to carry us through, and I need His words to show her how much He loves her. Even though He has not delivered her. Yet.
Be there for me. I mean, really be there. Don't avoid me because you don't know what to say. If you don't know what to say, say that. Live life with me in spite of the difficulties. Be you. Be there.
Don't try to give me all the answers. Most moms in my situation have so many answers floating around in our heads that we haven't had time to sort through them all yet. I may or may not want to brainstorm. Follow my lead. Give suggestions only if asked. Otherwise, just be there. Hang out. Have fun. Fun is important.
Obviously, don't compare children. I used to lie awake at night thinking about what I could do to help my children be faster swimmers, the best spellers in class, the best ball-catchers. I'm so over it. Some days I just worry about how I can help my girl get clothes on.
Encourage me in my efforts. It may be hard to understand why I would not vaccinate younger children or why I would pursue a certain kind of therapy, but my husband and I are not making any decisions based on whims. For each avenue that we pursue, we've weighed the consequences, calculated the costs and cautiously forged ahead.
Acknowledge the issue. While I wouldn't want anyone to make more of it than it is, it makes me feel like people think I'm crazy when they discount what I tell them. Some have told me that she'll probably outgrow it--it's a phase. Or that she's perfect when she's with them. Or that she doesn't seem like she's "having trouble". (At this point, I bite my tongue instead of telling them that she seems fine because SHE'S ON SOME POWERFUL PSYCHIATRIC MEDS!)
Play with me. Moms like me live a stressful, worried, what-if-filled life. Will she have to take these meds forever? Will we find a nutritional answer? How will we pay to find the answer? Will she be able to sustain relationships, have babies, take care of herself? Will my other children develop these "issues"? Like most people going through a hard time, we need to forget about worrying for a minute. We need to laugh and play.
Don't judge me. Right is right, and wrong is wrong; I'm not talking about not acknowledging that. I mean that people don't always know everything that's going on. When I was a classroom teacher, I was a good one, great at keeping control in the classroom. If I saw a child misbehaving at school or anywhere else, I always thought that I could fix it. My child would never behave that way. But now? Now I realize that sometimes kids misbehave because of slacker parenting or poor discipline techniques, but sometimes there is a deeper issue. I cringe at how arrogant I used to be about parenting.
And this might be the hardest thing, but: don't tell me that I shouldn't have to deal with these things. I know that it might seem supportive to say that, but frankly, it just gives me license to have a pity party. Maybe I shouldn't have to deal with these things, but this is our life. This is my girl's life. And I will never give up on her. For some unfathomable reason, God must have thought that I was strong enough to handle this. I can't afford to feel sorry for myself. It works much better to encourage me in the journey.
At the end of this post, I'd like to tell you that you will probably rarely run into a mom like me....that this is a "just in case" post. But I feel certain that you will run into more and more moms like me as time goes on. Perhaps you will become a mom like me. Because kids who don't neatly wear a label but have serious "issues"...there are more and more of them.
THE MOM IN THE MINIVAN NEXT TO YOURS
I'm a mom like so many others that you know. I am a suburban, minivan-driving Christian mom trying to raise my four kids in a negative world. My three daughters are ages fifteen, nine and two, and my son is six. I homeschool two of my kiddos. I taught elementary school for nine years. See? Like so many of the moms that you know, right?
But not really. My life is so not normal. Because my nine year old daughter struggles with mental illness.
"Issues" I tell myself. I never tell myself "mental illness". But my heart knows the truth.
My sweet daughter was born ten years into our marriage when our first daughter was five. All three of us could not wait to meet this baby girl. My husband was just finishing his doctoral program, and I was leaving my job to be a stay-at-home mom. Our life ahead looked sweet!
When my baby girl finally arrived, we were all over the moon in love with her. She was perfection itself! All 9 lb, 8 oz. of her! She smiled in the hospital, cuddled and snuggled and loved on her mama. I remember holding her against my chest, squeezing her tightly and thinking, This must be what heaven feels like. How could life get any sweeter?
As she grew, things only got better. Discipline with her was easy! I could just look at her and raise my eyebrows, she so wanted to please. She had long, curly blond hair, and she had an amazing vocabulary. She was reading before she turned 3, and we enjoyed trips to the library and the silliness of reading Robert Munsche together. One of my favorite memories of this time with her is of the two of us standing on the sidewalk in October and watching the leaves "dance down the street".
She was so bright that when we started to notice quirkiness, we just thought, "Isn't that cute?" Because it was! And we thought it was further evidence of how very intelligent she was. Really Intelligent=Quirky, right? And we were more than okay with that!
But - then came the temper tantrums if things were not the way they were "supposed" to be. Or if they didn't "feel right". And when I say temper tantrums, I'm not talking about the kind that ended with a nice little "teachable moment" and a spanking or time-out or anything of the sort. I'm talking about temper tantrums that often lasted for hours. Day after day. Tantrums in which she couldn't get control of herself, and we couldn't get control of her, either.
She couldn't stand the way that clothes felt, any clothes, so she was reduced to wearing knit clothes that were several sizes too large. Even then, she would scream and tantrum and stretch those clothes out until they had holes and hanging threads. And forget underwear! Or socks! Or any shoes except maybe Crocs. All of this did a real number on her.
I remember her asking me if she was the worst kid in the neighborhood.
Her pediatrician suggested therapy. Then she suggested an appointment with a developmental pediatrician--the wait was nine months long! All the while my daughter (and our whole family) was suffering. I found another doctor who had left "the system", and he suggested PROZAC for my 6 year old daughter. I politely declined on my way out the door.
We started occupational therapy, and I started hearing terms like, "Autistic Spectrum Disorders", "Pervasive Developmental Disorder", etc. My heart broke a little more every day. My amazing, lovely gift from God was slipping away from me, and I couldn't stop it from happening.
Then my kind-hearted daughter started becoming aggressive. It's hard to blame her. She was in agony, and her Daddy and I - the people who were supposed to take care of her no matter what - were powerless to do anything about it!
I was determined that we could "lick" this thing without medication, but finally, I broke down and took her to a psychiatrist because I was convinced that she was going to hurt herself or someone else if I didn't. My six year old daughter. To a psychiatrist. That was a dark, dark, dark day.
We put my daughter on medication. And not ADHD medication. "Black box warning" medication.
And although it was the last thing that I wanted in theory, I was begging for it by the time we got it. Our family had descended into hell.
Then there were medication changes, side effects (including an extra 20 pounds) and lots of reading for me. We added a gluten-free, cassein-free diet, which made a big difference despite the fact that most medical professionals told me it wouldn't work and wasn't worth the effort. We did a yeast detox that made a HUGE difference. We added lots of supplements. We saw more doctors and had more blood tests.
Mood disorder. Bipolar. Generalized anxiety. OCD. PANDAS. Lyme. Anti-depressants, anti-psychotics, antibiotics, probiotics, enzymes. Leaky gut, inflammation, strep, mycoplasma. And a tonsillectomy, too! I'm sure that I've left out some of the details, but you get the idea.
So this is my life right now.
That sweet life that I thought was waiting for us all? We're so far away from it that it doesn't even show up on my GPS. Except in my heart, where it's always there in the profound sadness of what ought to be, as I constantly search for the way to get it back.
The kids, the husband, the home, the minivan - this was my dream. And sometimes, like when we sit down to dinner, and my little son giggles so hard that he falls out of his chair or my nine year old daughter tells about going out of her way to be kind to a classmate who needs a friend ... at times like that, my heart smiles a warm grin.
But sometimes, my dream is a nightmare.
In addition to the daily struggle against super anxiety, tantrums, sensory processing issues, and hyper-irritability, there's my guilt:
Did I eat something while I was pregnant that caused this? Was it because I didn't ask to get off of bus duty at school, and I breathed all of those diesel fumes? Did I cause this by giving birth to her brother at a vulnerable time for her? Did I miss some sign of illness or allergy when she was an infant? Why did I give her all of those vaccines? Was it because of the way that I parented her as a baby and hugged and kissed on her all of the time, never leaving her with anyone else? Was it because I talked on my cell phone too much while I was pregnant with her? Did I cause this by eating gluten when I was pregnant?
And there's my anger:
How can my pediatrician not know where to send me or what to do??? And then how can he look at me like I'm crazy when I tell him that I don't want him to vaccinate my baby because we don't know what caused this in her big sister? How can doctors lecture me about ineffective diets, avoiding vaccines and trying holistic remedies when they don't have anything else to suggest? Why would people give us grief over feeding our children a special (much healthier, but much more difficult) diet when they know the issues that my daughter has struggled with?
There's alienation from family members who think that they could fix it all with a harder spanking.
There's trying to seem "normal" so that my precious daughter does not experience rejection from other children and adults who do not understand.
There's stress, and loads of it, because there are a million therapies to try, but none of them are free, and most of them come from doctors who aren't even in our state.
And there's exhaustion from trying to reason with my girl when she is not reasonable, discipline her for outburts that are often beyond her control, and trying to prevent my younger children from copying her negative behaviors.
And finally, at the bottom of it all, there is loving my amazing daughter, who deals with more than any child should have to. Loving her in a very tangible way: making sure that she gets her meds, doesn't eat a "forbidden food", goes into her classroom even when her daddy or I have to carry her in so that she doesn't give in to the separation anxiety that can paralyze her. Reminding her that God works all things together for the good of those that love Him.
And searching. There's always more searching until we find the answer for her.
And one more thing:
There's missing my girl.
Someone once asked me how they could help me, as my girl's often-overwhelmed mom. I didn't really know what to say because the answer that comes to mind so easily is, "Give me another hour in the day!" or something equally un-givable. But since then, I've thought about that a lot, and I think the biggest ways that someone can support a mom in my situation are the ways that she can support anyone in a difficult situation.
Pray for my child. And for me and my family. We need His strength to carry us through, and I need His words to show her how much He loves her. Even though He has not delivered her. Yet.
Be there for me. I mean, really be there. Don't avoid me because you don't know what to say. If you don't know what to say, say that. Live life with me in spite of the difficulties. Be you. Be there.
Don't try to give me all the answers. Most moms in my situation have so many answers floating around in our heads that we haven't had time to sort through them all yet. I may or may not want to brainstorm. Follow my lead. Give suggestions only if asked. Otherwise, just be there. Hang out. Have fun. Fun is important.
Obviously, don't compare children. I used to lie awake at night thinking about what I could do to help my children be faster swimmers, the best spellers in class, the best ball-catchers. I'm so over it. Some days I just worry about how I can help my girl get clothes on.
Encourage me in my efforts. It may be hard to understand why I would not vaccinate younger children or why I would pursue a certain kind of therapy, but my husband and I are not making any decisions based on whims. For each avenue that we pursue, we've weighed the consequences, calculated the costs and cautiously forged ahead.
Acknowledge the issue. While I wouldn't want anyone to make more of it than it is, it makes me feel like people think I'm crazy when they discount what I tell them. Some have told me that she'll probably outgrow it--it's a phase. Or that she's perfect when she's with them. Or that she doesn't seem like she's "having trouble". (At this point, I bite my tongue instead of telling them that she seems fine because SHE'S ON SOME POWERFUL PSYCHIATRIC MEDS!)
Play with me. Moms like me live a stressful, worried, what-if-filled life. Will she have to take these meds forever? Will we find a nutritional answer? How will we pay to find the answer? Will she be able to sustain relationships, have babies, take care of herself? Will my other children develop these "issues"? Like most people going through a hard time, we need to forget about worrying for a minute. We need to laugh and play.
Don't judge me. Right is right, and wrong is wrong; I'm not talking about not acknowledging that. I mean that people don't always know everything that's going on. When I was a classroom teacher, I was a good one, great at keeping control in the classroom. If I saw a child misbehaving at school or anywhere else, I always thought that I could fix it. My child would never behave that way. But now? Now I realize that sometimes kids misbehave because of slacker parenting or poor discipline techniques, but sometimes there is a deeper issue. I cringe at how arrogant I used to be about parenting.
And this might be the hardest thing, but: don't tell me that I shouldn't have to deal with these things. I know that it might seem supportive to say that, but frankly, it just gives me license to have a pity party. Maybe I shouldn't have to deal with these things, but this is our life. This is my girl's life. And I will never give up on her. For some unfathomable reason, God must have thought that I was strong enough to handle this. I can't afford to feel sorry for myself. It works much better to encourage me in the journey.
At the end of this post, I'd like to tell you that you will probably rarely run into a mom like me....that this is a "just in case" post. But I feel certain that you will run into more and more moms like me as time goes on. Perhaps you will become a mom like me. Because kids who don't neatly wear a label but have serious "issues"...there are more and more of them.
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