Challenged Hope

Grandmother raising Grandchildren with FASD in Hamilton Ontario Canada


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FASD Feelings

Kids with FASD often believe their feelings or opinions are worthless, therefore it’s important to distinguish and label emotions so the individual can more easily recognize and express their feelings.

http://www.fasd.alberta.ca offers a booklet titled: FASD Strategies and Solutions. There I found a page on Feelings and Emotions which reads: “…. teach emotions in a concrete way (e.g. smiling means happy).”

  • A “check-in” time for internal feelings will help in stating which feelings are physical and concrete.
  • After an outburst, talk about what your child felt during the meltdown; for example, a beating heart, sweaty hands, hot face. Attach the concrete feeling to the meltdown so she can begin to identify what feelings are connected to certain behaviours.
  • In order to be able to act appropriately to any emotion, your child must first have some way to recognize concretely what she is feeling. That feeling must then be named and “rules” for appropriate reaction to that feeling must be made.
  • Create a “feelings” dictionary, using line-drawings of complete stick men rather than just facial expressions for those most common feelings the child is likely to experience. A complete body can show more than just a face and is much easier for the child to associate with what he is feeling. Have one emotion per page.
  • Always name emotions very clearly. With teens and adults, name the emotion first and then follow with the words their friend’s use (“angry” vs. “pissed off”).
  • To encourage emotional expression, use a gingerbread man outline drawing and simple colour codes (e.g. red for anger, blue for sad, yellow for happy, and gray for blank). Have your child colour on the gingerbread man where he has those feelings. This can give you a quick and immediate idea of the state of emotional health (e.g., red in the head and the hands is a good indicator of being ready to “lose it”; gray in the head and on the body is a good indication of being “shut down”). this will help, especially when the child is not able to verbalize her thoughts and feelings.
  • Once the feeling is identified correctly, have a simple plan to help the child. For instance:
  1. “Losing it” – use calm down technique.
  2. Caregiver is “ticked off” – stand still, look at caregiver and listen.
  3. “Tired” – lie down and rest.
  4. “Frustrated” – have a list of physical activities that she can do and have her choose between two.
  5. “Angry” – express it physically in a previously identified acceptable and safe manner.

Do not expect: 

  • Insight
  • Application of yesterday’s learning to today’s experiences
  • That the child will remember a feeling from one time to the next without support.

The child will not necessarily be able to understand the emotions of others just because we were not able to help her understand her own.

 

 


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How to Converse with a Mentally Disabled Child

Recently, there was commercial aired on TV about useless comments people make to those who suffer with depression, such as – snap out of it; you need to get out more; it’s all in your mind; etc. The reason I like the ad is because it outlines the misunderstandings society has about people challenged with a mental illness. As I raise my mentally disabled grandchildren I often hear similar phrases aimed at them by well-meaning people and find them difficult to ignore. So I’ve put together a check-list for people who are uncertain as to how to converse with children with mental disorders or, at least, how to treat my grandchildren should you ever have the pleasure of meeting them.

  • Always make eye contact when you ask them how they are, and speak clearly, but not ultra-slowly. Smile while you count to five, if they haven’t responded within that time, feel free to turn to me for a response.
  • Don’t offer to shake their hands. They are mega-cautious around strangers which makes them fearful of non-familiar physical interaction.
  • Don’t ask too futuristic questions, like – what are your plans for the weekend? Chances are they can’t remember what day it is, so the word weekend is redundant to them. Keep all questions in the moment, like – How was school today? or, What is your teacher’s name?
  • Don’t be offended if they don’t want to talk about you. It’s not because they are disinterested in your likes and dislikes, but rather they are too shy to ask. Instead, relate to them what you like, such as – I love to read books. Do you like books too? But don’t ask them which ones, as they won’t remember titles.
  • Compliment them. To hear you like something about them puts them at ease, like – Wow, nice shoes! or, I like your haircut!
  • Don’t compare them to non-disabled kids, such as – My son loves Math and he’s very good at it. He won an award last year. I know it’s hard not to boast about what your children are doing, but saying it to a mentally disabled child who struggles with every subject at school is just downright insensitive.
  • If you ask them what they enjoy doing, remember to make suggestions as they find it difficult to think on their feet. Don’t ask – What are your interests? Instead, ask – Do you enjoy playing video games? Which kind?- sports? Mario? Can you ride a bike, swim, skateboard, etc? Do you like watching TV? 
  • Don’t overreact if they say something mildly inappropriate. My eldest granddaughter talks way too much about farts without realizing it makes people uncomfortable. If something unacceptable is said, a simple response like – Let’s not talk about that – accompanied by a smile and followed with a quick change of subject will usually put an end to it.
  • Don’t turn to me and begin talking, in front of my grandchildren, about other disabled people you know. For example, don’t say – I know another child who suffers with mental problems. My grandchildren are aware of their disabilities, but not to that extent, and would be offended by such a conversation.
  • Don’t be offended if they suddenly run off while you are talking to them. This is their way of telling you they are finding interaction too difficult. Just smile and call – Bye then!

“It is not our disability that is the problem, but rather it is the way our disabilities are viewed by others.”
…..Drexel Deal


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What is an Anxiety Disorder?

Read: My Story – How I Became A Grandmother Raising Grandchildren. Posted July 2012

  • What is an Anxiety Disorder?

All four of my mentally disabled grandchildren suffer with anxiety disorders, but not all express them in the same way. For example, the third child is able to form friendships with children, but when an adult comes on the scene, he panics. And not just when confronted by adult authority figures like caseworkers or teachers, but all adults. Usually trying to appear as invisible as possible, he either buries his head in a cushion or in his hands or hoodie, and refuses to speak. The youngest, on the other hand, speaks up for herself against adults (a little too much), but finds making and keeping friends much more difficult, often allowing her anxiety to disrupt playtime due to her need to always be in control of every situation. When it becomes clear that friends are in disagreement with her, she panics and can lash out both verbally and physically.

I found this information about anxiety disorders at http://www.webmd.com, but there is an Ontario website at http://www.anxietydisordersontario.ca.

  • There are many types of anxiety disorders that include panic disorder, obsessive compulsive disorder, post-traumatic stress disorder, social anxiety disorder, specific phobias, and generalized anxiety disorder. Anxiety is a normal human emotion that everyone experiences at times. Many people feel anxious, or nervous, when faced with a problem at work, before taking a test, or making an important decision. Anxiety disorders, however, are different. They can cause such distress that it interferes with a person’s ability to lead a normal life. An anxiety disorder is a serious mental illness. For people with anxiety disorders, worry and fear are constant and overwhelming, and can be crippling.

What Are the Types of Anxiety Disorders?

There are several recognized types of anxiety disorders, including:

  • Panic disorder: People with this condition have feelings of terror that strike suddenly and repeatedly with no warning. Other symptoms of a panic attack include sweating, chest pain, palpitations (irregular heartbeats), and a feeling of choking, which may make the person feel like he or she is having a heart attack or “going crazy.”
  • Obsessive-compulsive disorder (OCD): People with OCD are plagued by constant thoughts or fears that cause them to perform certain rituals or routines. The disturbing thoughts are called obsessions, and the rituals are called compulsions. An example is a person with an unreasonable fear of germs who constantly washes his or her hands.
  • Post-traumatic stress disorder (PTSD): PTSD is a condition that can develop following a traumatic and/or terrifying event, such as a sexual or physical assault, the unexpected death of a loved one, or a natural disaster. People with PTSD often have lasting and frightening thoughts and memories of the event and tend to be emotionally numb.
  • Social anxiety disorder: Also called social phobia, social anxiety disorder involves overwhelming worry and self-consciousness about everyday social situations. The worry often centers on a fear of being judged by others, or behaving in a way that might cause embarrassment or lead to ridicule.
  • Specific phobias: A specific phobia is an intense fear of a specific object or situation, such as snakes, heights, or flying. The level of fear is usually inappropriate to the situation and may cause the person to avoid common, everyday situations.
  • Generalized anxiety disorder: This disorder involves excessive, unrealistic worry and tension, even if there is little or nothing to provoke the anxiety.

What Are the Symptoms of an Anxiety Disorder?

Symptoms vary depending on the type of anxiety disorder, but general symptoms include:

  • Feelings of panic, fear, and uneasiness
  • Uncontrollable, obsessive thoughts
  • Repeated thoughts or flashbacks of traumatic experiences
  • Nightmares
  • Ritualistic behaviors, such as repeated hand washing
  • Problems sleeping
  • Cold or sweaty hands and/or feet
  • Shortness of breath
  • Palpitations
  • An inability to be still and calm
  • Dry mouth
  • Numbness or tingling in the hands or feet
  • Nausea
  • Muscle tension
  • Dizziness

What Causes Anxiety Disorders?
The exact cause of anxiety disorders is unknown; but anxiety disorders — like other forms of mental illness — are not the result of personal weakness, a character flaw, or poor upbringing. As scientists continue their research on mental illness, it is becoming clear that many of these disorders are caused by a combination of factors, including changes in the brain and environmental stress.
Like certain illnesses, such as diabetes, anxiety disorders may be caused by chemical imbalances in the body. Studies have shown that severe or long-lasting stress can change the balance of chemicals in the brain that control mood. Other studies have shown that people with certain anxiety disorders have changes in certain brain structures that control memory or mood. In addition, studies have shown that anxiety disorders run in families, which means that they can be inherited from one or both parents, like hair or eye color. Moreover, certain environmental factors — such as a trauma or significant event — may trigger an anxiety disorder in people who have an inherited susceptibility to developing the disorder.

How Common Are Anxiety Disorders?
Anxiety disorders affect about 19 million adult Americans. (My note: 12% of Canadian population). Most anxiety disorders begin in childhood, adolescence, and early adulthood. They occur slightly more often in women than in men, and occur with equal frequency in whites, African-Americans, and Hispanics.

How Are Anxiety Disorders Diagnosed?
If symptoms of an anxiety disorder are present, the doctor will begin an evaluation by asking you questions about your medical history and performing a physical exam. Although there are no lab tests to specifically diagnose anxiety disorders, the doctor may use various tests to look for physical illness as the cause of the symptoms.
If no physical illness is found, you may be referred to a psychiatrist or psychologist, mental health professionals who are specially trained to diagnose and treat mental illnesses. Psychiatrists and psychologists use specially designed interview and assessment tools to evaluate a person for an anxiety disorder.
The doctor bases his or her diagnosis on the patient’s report of the intensity and duration of symptoms — including any problems with daily functioning caused by the symptoms — and the doctor’s observation of the patient’s attitude and behavior. The doctor then determines if the patient’s symptoms and degree of dysfunction indicate a specific anxiety disorder.

How Are Anxiety Disorders Treated?
Fortunately, much progress has been made in the last two decades in the treatment of people with mental illnesses, including anxiety disorders. Although the exact treatment approach depends on the type of disorder, one or a combination of the following therapies may be used for most anxiety disorders:

  • Medication: Drugs used to reduce the symptoms of anxiety disorders include anti-depressants and anxiety-reducing drugs.
  • Psychotherapy: Psychotherapy (a type of counseling) addresses the emotional response to mental illness. It is a process in which trained mental health professionals help people by talking through strategies for understanding and dealing with their disorder.
  • Cognitive-behavioral therapy: People suffering from anxiety disorders often participate in this type of psychotherapy in which the person learns to recognize and change thought patterns and behaviors that lead to troublesome feelings.
  • Dietary and lifestyle changes
  • Relaxation therapy

Can Anxiety Disorders Be Prevented?
Anxiety disorders cannot be prevented; however, there are some things you can do to control or lessen symptoms:

  • Stop or reduce consumption of products that contain caffeine, such as coffee, tea, cola, energy drinks, and chocolate.
  • Ask your doctor or pharmacist before taking any over-the-counter medicines or herbal remedies. Many contain chemicals that can increase anxiety symptoms.
  • Seek counselling and support after a traumatic or disturbing experience.

If you believe your child is suffering with any of the anxiety disorders described above, see your doctor for help, or for more information on anxiety disorders in Ontario, Canada, go to http://www.anxietydisordersontario.ca.


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A Message To The World From My Mentally Disabled Grandchildren

Is it just my imagination or are people becoming more hostile? I was standing in line at a fast-food restaurant waiting to purchase a coffee, when a young man with obvious mental health problems entered and began walking briskly from table to table shouting hello, waving to the patrons and smiling broadly. Unfortunately, most of the customers turned away when he spoke to them, deliberately ignoring him while stuffing food into their mouths or continuing their conversations with eyes fixed firmly on their companions.

Gladly, the young man seemed unfazed by such ignorant behaviour and made his way to a line-up, where he was met with much the same attitude. Then, disappearing for a few moments, he unexpectedly resurfaced at my side, took my hand in his and kissed it gently, and said – Hello! Hello! Have a wonderful day! – but not one patron cracked a smile, and all eyes were averted in embarrassment. After purchasing a pop, he left the restaurant and I swear I head a collective sigh of relief from the patrons.

You know, this kind of attitude toward disabled people has to stop. I can’t help comparing it to an experience I had as a child. I remember my mother asking me to run an errand to a neighbour’s house. She had borrowed something and needed it returned. She gave me the address and I headed out. When I reached the house I tapped lightly on the door which was opened by a blind woman. I stood looking at her horrified because, instead of eyes, it looked as if someone had pushed two hard-boiled eggs into her sockets. To my own young, perfect, eyes, the scene was frightening, but she sensed this right away and urged me not to be afraid, explained she was blind, asked my name and then invited me inside. Leading me into the living room I was introduced to five adults who were sitting, chatting and laughing, and drinking tea. The atmosphere was alive, and when I was offered cake and milk, I couldn’t help but get caught up in their warmth and friendliness toward each other. Even at my young age I sensed the love and compassion these adults extended to the blind woman. She obviously had many people to call upon if help was needed.

Is it still like that today? Sadly, I don’t think so.

Over the years of raising my mentally disabled grandchildren I have witnessed over and over others’ impatience, coldness, indifference, anger, and denigrating attitude toward them, causing the children more anxiety and low self-esteem while trying to survive in this world. So on their behalf, because they don’t have the mental capability to do it, I am writing this Message To The World in the hope that someone, somewhere, will read it and have second thoughts when turning their back to a disabled child.

 A Message To The World On Behalf Of My Mentally Disabled Grandchildren

  • Dear Relative:Why don’t you like me? I like you! I’ve seen you laugh with your friends and other members of our family, but you never laugh with me. In fact, I always seem to make you frown. Why is that?
  • Dear Teacher: I’m sorry I can’t always keep up with the other students, but I have trouble with reading. I don’t always understand the story you are telling, or the math you are teaching, and when recess comes I try my very best to stay out of fights, but the other kids deliberately tease me and make me angry.
  • Dear Waitress: Please be patient with me. I try to understand the menu, but it takes me longer than others to decide because my learning disabilities make reading difficult and I’m trying my best to count my money. I realize you are busy but it’s rude to dismiss me with a stern look and sigh as you pass on to the next customer.
  • Dear Neighbour: Why do you always invite other children on the block to your kid’s birthday parties, but never me? I like to have fun too, and I’ll buy your child as nice a gift as the others’ do. What is it you don’t like about me that makes you refuse to have me in your home?
  • Dear Friend: I’m sorry if sometimes I say inappropriate things to you. It’s not that I don’t like you, it’s just that sometimes my brain gets overly frustrated and makes me say things I shouldn’t. I love you, please forgive me and be my friend again?
  • Dear Grocery Shopper:Why did you tut gruffly and roll your eyes at me when my emotions broke down. There were so many people in the store, I got anxious and couldn’t cope. That’s why I had a tantrum and spoiled your grocery shopping but, you didn’t have to make a big show of having to walk ALL the way around me to get to the next aisle.
  • Dear Church Member: Please don’t get upset when I can’t sit still through a whole hour of your worship service. I have ADHD and it won’t let my body or brain rest for long. Instead of getting angry at my fidgeting, why not pray for me. That way people will know you really are holy, instead of just pretending to be.
  • Dear Bus Driver:My caregiver is giving me more independence and I want to make her proud of me, so please don’t raise your voice when I’m unsure of how much your tickets are, or when I keep asking you if the next stop is mine.
  • Dear Pool Attendant: Please don’t sigh loudly when I soil your pool. You see, I’m used to wearing diapers, but I was having so much fun that I forgot I didn’t have one on. All the swimmers seemed so angry with me. Are you angry too?
  • Dear Caseworker: I know you mean well, but when you tell me I have to go away for a while so my family can get some peace, it breaks my heart because it’s not my fault. My brain doesn’t work as well as yours and makes me loud and aggressive.
  • Dear Mother: Why did you drink alcohol and take drugs while you were pregnant with me? As you indulged in your secret pleasures, didn’t you care about the struggles I would have to face each day? And where are you? Don’t you want to see me? Even though I don’t know you, I think about you every day. Do you ever think about me? Do you love me?
  • Dear Father: Why didn’t you use a condom? Didn’t you care about the struggles I would have to face each day as a fatherless child? And where are you? Don’t you want to see me? Even though I don’t know you, I think about you every day. Do you ever think about me? Do you love me?

Above is just a sample of the struggles my grandchildren face each day. And people who consider themselves normal have the audacity to rudely shun or ignore them when they are trying their very best to cope with the challenges they have been undeservedly handed. So on their behalf I ask that whenever you meet up with a mentally disabled child, assign at least one moment of your life to trying to imagine the difficulties that child faces each day, and give them a smile. I know it will brighten their day and, who knows, it might even brighten yours!


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What is ODD (Oppositional Defiance Disorder)?

My grandchildren suffer from ODD (Oppositional Defiant Disorder). Experiencing their ODD is vastly different from knowing what it actually is and its cause. From a very early age they each showed signs of having the disorder through excessive defiance toward me and any other adult in authority. Apparently, ODD is a neurological or behavioral disorder expressed through extreme contention and angry outbursts. I have also learned that this disorder can occur separately, or in conjunction with Attention Deficit Disorder, and/or anxiety and/or depression. While all children (and adults) are capable of defiance, those with ODD do so to the extreme.

To be honest, while raising my grandchildren I find their ODD more difficult to deal with than their FAS (Foetal Alcohol Syndrome) simply because it seems everything I ask or advise them to do is met with a resounding refusal which I’m sure you can imagine, over the years, has been frustrating. Early on, to relieve that frustration, I decided to make a joke out of it by purposely rattling off a series of questions to which I knew they would say no – then unexpectedly ask them a question that I knew they would love to say yes to, like so:

  • Please bring your dishes to the sink —NO! Don’t have to!
  • And help me clear the table — NO! Don’t want to!
  • Then you need to start getting ready for bed —NO! It’s too early!
  • But before you do, please put your toys away — NO! I’m still playing!
  • Would you like some ice-cream? — NO! I hate ice cream!… Er, I mean YES! I do want some ice cream.

I loved to see the look on their faces as they got flustered over the final question, and would giggle hilariously without really knowing why. I guess it just relieved my anxiety over their continuous non-cooperation (over the years I have learned many strange ways to cope). I’m unashamed to say I did it often and without remorse, although I’m sure there are many experts who would cringe at such teasing of a child with a disorder that’s not their fault!

Not to overlook the serious side of ODD, here is some information I discovered on the Internet. I think this one is from www.About.com, although I copied and pasted it and then forgot where I saw it. I hope they don’t mind me using it. Although many websites describe ODD, I chose this one because the features below describes my grandchildren’s characteristics to a tee.

The features of ODD

  • The person may be spiteful and often seeks revenge against those he imagines have wronged him. The condition is often accompanied by swearing or the use of obscene language, refusing to to take responsibility for his own actions, refusing to comply with reasonable requests and rule breaking. He may purposefully be mean to others or become annoying and try to upset others. Behaviour may include temper tantrums filled with hateful comments.

Theories/Speculation

  • The cause of ODD is unknown, but there appear to several contributing factors. Biological factors may play a role. Defects or injuries to the brain may cause abnormal amounts of neurotransmitters in the brain. Neurotransmitters are necessary to transmit messages and allow areas of the brain to communicate with each other. An imbalance of these chemicals may cause the messages to be intercepted or rerouted in a way that causes some of the behaviours seen in ODD. Genetics may play a role. Children and teens with ODD generally have a higher rate of other mental disorders in their family. Environment is thought to be a contributing factor. Family dysfunction, inadequate discipline and the presence of mental illness in the household appear to contribute the onset of ODD.

Identification

  • There currently are no medical tests that diagnose ODD. A diagnosis relies on the expertise of the evaluator who will use his clinical experience and judgment to assess behaviour questionnaires filled out by parents, teachers and other adults in the child’s life. The child will be interviewed and observed for the presence of symptoms and behaviours related to ODD. A psychological assessment will be completed to rule out or identify co-existing disorders like ADHD, depression or anxiety.

Prevention/Solution

  • Treatment of ODD requires consistency and patience. Other existing conditions should be treated before or in conjunction with the onset of treatment for ODD. Parent education to improve parenting skills and to learn techniques for dealing with the ODD child is necessary. This training involves learning to use time out techniques, setting realistic limits and sticking to them, providing healthy choices, remaining calm and reacting with reason, following schedules and praising the child for positive behaviors. Individual and/or family counselling may be in order, particularly if the disorder has existed for some time, if the family is under stress or there are other mental illnesses in the family.

Potential

  • Early intervention and consistent expectations that are enforced fairly and promptly, along with the expression of unconditional love can bring positive results. Behaviour improves as the child builds confidence in himself and trust in the adults in his life to provide guidance and consequences that are designed with his best interest in mind. Counselling may teach the child to see outside of himself and recognize that some of his perceptions are unnecessarily negative and restrictive. ODD that goes untreated or is ignored may result in conduct disorders well into adult life.

Psychotherapy

  • Psychotherapy focuses on behavioral control through parental management training (PMT). The training is conducted in a group setting with parents and children present. Parents learn processes that encourage positive behaviour and identify causative factors. The counselling technique encourages development of effective ways to control anger and alter disruptive behaviour.

Medication

  • No medication exists to treat ODD as a singular condition. There are medications available that focus on treating related conditions such as depression.

Self Help Techniques

  • Self-help groups can be helpful in providing support to parents of children with ODD. You should seek out a local community group with other parents who are dealing with similar issues. Other parents can always offer suggestions and tips to dealing with the stress of raising an ODD child.

 If you would like more information, or need help dealing with a child who you believe might have the disorder, your first step would be to contact your family doctor who can then guide you toward the help you require.