Tag Archives: struggle

Foetal Alcohol Syndrome

Posted on by under Birth and Babyhood, Pregnancy

The more alcohol a woman drink when she’s pregnant, the greater the risk she is taking with her baby’s health. Miscarriage, stillbirth, premature birth and small birth weight are all associated with a mother’s drinking alcohol during pregnancy.

Foetal Alcohol Syndrome (FAS)  affects the way a baby’s brain develops. First discovered by two doctors in the US in 1973, the seriousness of  the condition depends on how much alcohol a mother drank during pregnancy. The World Health Organisation quotes a 2005 US study which estimated that one in every 1,000 children are born with FAS (2).

What is foetal alcohol syndrome?

 

picture-of-girl

Children with FAS have distinct facial features including: small and narrow eyes, a small head, a smooth area between the nose and the lips and a thin upper lip. They also show the following symptoms:

  • Hearing and ear problems
  • Mouth, teeth and facial problems
  • Weak immune system
  • Epilepsy
  • Liver damage
  • Kidney and heart defects
  • Cerebral palsy and other muscular problems
  • Height and weight issues
  • Hormonal disorders

How FAS develops during pregnancy

When a pregnant woman drinks, the alcohol goes across the placenta to the foetus via the bloodstream The foetus’ liver isn’t fully formed, so it cannot metabolise the alcohol quickly enough.  At this stage, the baby has a high blood alcohol concentration. It therefore lacks oxygen and the nutrients needed for its brain and organs to grow properly. White matter in the brain, which is responsible for speeding up the processing of information, is sensitive to alcohol so when a mother drinks, it affects the development of her baby’s white matter.”

Timing is another medical factor in the development of foetal alcohol syndrome. A baby’s facial features are formed during weeks six to nine of pregnancy. Scientific evidence shows that mothers who drink during this three-week window are more likely to have babies with the facial deformities associated with FAS. Damage to the baby’s organs through drinking is most likely to happen in the first three months.

 

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FASD signs and symptoms

Foetal Alcohol Spectrum Disorder (FASD) is the umbrella term used to describe the conditions that occur in people who have been diagnosed with some, but not all, of the symptoms of foetal alcohol syndrome. Like FAS, FASD is caused by a mother’s drinking during pregnancy, and it affects the way a baby develops physically and mentally. There are no accurate records of the incidence of FASD in Western countries, but experts estimate that it may be as high as one child in 100 is born with FASD (

It is more difficult for a specialist to diagnose FASD than it is FAS. This is because children with FASD may not have facial deformities. It might not be until they start going to school and interacting with others that the following symptoms – which also affect children with foetal alcohol syndrome – show up:

  • Learning difficulties
  • Problems with language
  • Lack of appropriate social boundaries (such as over friendliness with strangers)
  • Poor short term memory
  • Inability to grasp instructions
  • Failure to learn from the consequences of their actions
  • Egocentricity
  • Mixing reality and fiction
  • Difficulty with group social interaction
  • Poor problem solving and planning
  • Hyperactivity and poor attention
  • Poor coordination.

Treatment for children

GPs can refer children with FAS and FASD to community paediatricians who are likely to investigate problems further with psychologists, psychiatrists, speech and language therapists and specialists for organ defects.

Dr Mukherjee runs a clinic for children and adults over six with FAS and FASD. He diagnoses FASD by excluding similar conditions such as Attention Deficit Hyperactivity Disorder (ADHD). “Then it’s about working with the child, parents and other professionals, such as teachers, to find a management strategy for the condition,” he says. “For example, parents can learn to repeat instructions for children and use simple language and teachers should allow them more time and provide extra supervision.”

Early diagnosis is key. Research shows that people who have FAS or FASD go on to experience “secondary disabilities” – those not present at birth – which could be prevented with appropriate support. These include mental health and alcohol and drug problems. “Early diagnosis allows the stability and management that children with FAS or FASD need to be invoked earlier,” says Professor McIntosh.

Advice for mums-to-be

We don’t know how much alcohol is safe to drink in pregnancy. It depends on various factors such as how fast a mum-to-be absorbs alcohol, her physical health, diet and what medication she is on. It’s why the government advises pregnant women and those trying to conceive to avoid alcohol altogether.

If you didn’t know you were pregnant and you have been drinking above the government’s lower risk guidelines, don’t panic. Talk to your doctor or midwife about any concerns you may have. Just because you may have drunk does not mean you have necessarily done damage. If you drink a lot of alcohol  and are pregnant and find it hard to stop, talk to your doctor about getting help.

“If you drink a low amount when you are pregnant your baby has a low risk of developing FAS or FASD,” says Dr Mykherjee. “If you drink heavily you have a high risk. If you don’t drink, there’s no risk at all.”

 

Helping disabled children cope with bullying

Posted on by under Childhood

Children with a disability may be bullied. If this happens, it is important that action is taken to stop the bullying. That goes without question. However we  always cannot  protect our children from the bullies  so it is important to help  them build the resilience required to prevent bullying having the devastating impact it can have on a child’s life.

The points raised below may help you in bully-proofing your child

Do

Encourage Positive Emotions – It is essential that we provide o children with opportunities to have positive emotions. This sounds simple, but it’s easy to get distracted by practicalities of parenting so that we fail to provide them with enough opportunities to be joyful. Encourage children to find pleasure and humour in life. Although we should never overlook or fail to discuss their struggles, we should consistently provide children with opportunities to develop positive emotions hope by offering them situations in which they feel confident and encouraged.

Provide Social Support – The more our children feel like they have a social support from their family, the better they will handle negative social interactions outside the home. It’s important to make time to talk to children and to just be with them. Even if a child, particularly a teenager, is resistant to confiding, don’t give up. Try to find ways to let them know that you are there for them when they are ready to open up.

An extended family circle is also beneficial. Many children aren’t comfortable talking to their parents about certain things, but they may have a relative or family friend who they trust. The same holds true for their friendships with children who have a positive influence on them.

Even a child who is isolated from peers will do much better with family support. As he or she struggles to make friends, you can be helpful by exposing them to positive social situations: i.e. volunteering with them, taking them to community events, or participating in activities with friends of ours who have children around the same age. It is important to facilitate the forming of these social connections without being critical or providing too much pressure.

Find an Area of Interest– Helping children to find something that interests them and that they can excel in is a gift that can shape their lives.  Get them involved in activities that help them feel good about themselves. Provide them with a variety of opportunities to find what specifically appeals to the. It is important to support them in their excitement. It is also important not to confuse false praise with encouragement. Children can tell the difference, and they often feel confused when our compliments don’t match their accomplishments.

Teach strategies for coping with stress – Children must be taught how to calm themselves down when distressed or feeling aggressive. We can teach them to be aware of themselves and their emotions, while learning to regulate their reactions. It is important to help them develop the ability to remain calm, even in the face of bullying. The ability to see what is going on in their own minds and the minds of others will help children to recognize their own reactions and understand others better, so they can more effectively cope with bullies.

Promote Problem Solving Skills – To equip children with invaluable problem solving skills, we must show them how to be flexible in their responses. If a child faces a challenging situation, it is important to sit down with them and encourage them to think about the many possible courses of action available and which will yield the most benefit.  If, for example, they endure teasing from a friend, what can they do? Is revenge really the best option? Can they joke back and not “take the bait?” Does ignoring it really solve the problem? Should they talk directly to the friend about how the teasing makes them feel? Is it better for an adult to be present in the conversation?

We can teach our children to always ask themselves, how can I get help? How can I get more l support? And remember, the more adaptive we are in dealing with our own problems, the more adaptive they will be with theirs.

Orient Them Toward Future – Part of ensuring our children stay hopeful involves orientating them toward the future. Helping them plan for their future doesn’t necessarily mean knowing what college they want to get into or how many children they plan to have. It also doesn’t mean helping create a fantasy of a future that could never exist. It is more a matter of helping them focus on their real, everyday goals, such as a desire to visit a certain city or learning to drive a car. It can be a matter of making them aware of a heroic person who inspires them or introducing them to new situations that open them up to new ideas and opportunities.

Columnist Dan Savage started the “It Gets Better Project” to encourage struggling young people to have faith that they can get through bullying and adversity and one day enjoy a happy and fulfilling life. This message is one from which every adolescent can benefit. Teaching children that the future holds brightness and possibility is a lesson that can lift them through low times.

Lead by Example – In each of the previous suggestions, it is vital to lead by example. Telling children what to do and how to behave will rarely influence them as much as showing them how to handle difficult situations. Exposing them to the constructive approaches we take in finding solutions to problems in our lives encourages them to handle matters in a similar way. We should always aim to act in a way that is consistent with our values and provide our children with a model to do the same.

Don’t

Support Maladaptive Thinking – Negative thoughts contribute to a child’s insecurities and low self-esteem. Allowing our children to focus or dwell on a perceived weakness or negative trait is not constructive. Instead, encourage them to challenge their hostile self-criticisms and self-attacks. This form of maladaptive thinking, which is referred to as the “critical inner voice,” will lead a child to feel mentally defeated and victimized by circumstances.

The critical inner voice can contribute to stress, anger, and depression. It can make children gravitate toward activities that leave them feeling bad and avoid those that make them feel good. It may, for example, encourage them to be isolated, “Don’t leave your room. No one out there wants to see you.” It can encourage them to act out, “Why even go to school? You’re too stupid to learn anything anyway.” Allowing children to indulge in reflecting or acting on these critical inner voices can have harmful effects. Instead, encourage them to identify these negative thoughts and challenge them in their actions. Conquer Your Critical Inner Voice, a book I co-authored with Dr. Robert Firestone and Joyce Catlett, provides exercises for identifying and challenging this critical inner voice.

Be Critical, Coddling, or Ignore Issues – We all know the importance of supporting our children in new challenges. However, when our children take on something new to them, it is often hard to find a balance between pushing them too hard and doing too much for them. Ideally, we should try to put them in slightly novel situations in which they’re slightly uncomfortable and we’re there to back them up. We don’t want to over-push our children, leading them to feel abandoned or afraid. In this same way, we don’t want to overprotect them by speaking for them or stepping in too often, which teaches them to feel dependent or helpless. Most importantly, we should never pretend not to notice that there is a problem. Ignoring the fact that our children are struggling will only leave them feeling more alone than ever.

Dwell on the Negative – When a child goes through a negative experience, it is important to give them the platform to talk about it. Encourage the child to express what happened and how it made him or her feel. We can help children resolve any traumas they experience by reframing the experiences, so they can learn from them. This is not to say we should attempt to alter reality or ignore the fact that they were hurt by something. However, the more people mull over painful events or tell themselves stories about being victims, the worse off they are in terms of building resilience.

It is really unhelpful to promote the idea that the world is unsafe or that change is not possible. Instead, we should tell our children positive uplifting stories about our own challenges. “I used to be so shy that I sat alone every day at lunch. Then one day, I made a friend at school, and slowly I started to feel more and more comfortable talking to him. Then I grew more comfortable talking to other children. Eventually, I had a close group of friends who never made me feel embarrassed or shy.”

Avoid Dealing With Painful Events -When a traumatic event occurs, we shouldn’t encourage children in engaging to simply steer clear of anything that reminds them of the occurrence. For example, if a child was once bullied on a certain street, while carrying a certain backpack, we should help them to talk about the experience and help them process their reactions to it. Having them just take another street or throw away the backpack won’t resolve the experience in their minds. In fact, avoidant coping strategies will make them less resilient.

Never avoid talking about painful events. One of the biggest challenges in stopping bullying is that many children fail to disclose incidents in which they were abused. When we encourage our children to talk about bad things that happen to them, we help them make sense out of these experiences. Memories that are not made sense of by being expressed as a coherent narrative can have negative effects on children later in their development. They may start to show behaviour problems, increased fears, stress or anger, and become less social. Creating a coherent narrative helps make meaning out of experiences and form a sense of personal agency and closure.

So even if we are not able to protect our children from the bullies we can help them build the resilience required to not allow bullying to have the devastating impact it is capable of having on a child’s life. And this will provide them with an essential coping tool they can take with them into adulthood.

 

Mothers of autistic children in crisis. The need for better services

Posted on by under Adulthood, Childhood

In the UK and in other counties, public services are being cut. The cuts are made  to decrease national debts and to cut taxation because political parties want to be seen as making tax cuts to win over voters. Cuts in services have the greatest impact on the most vulnerable people. Amongst these are the mothers of  those severely autistic children. whose behaviour is challenging Fortunately few mothers end up in such crises that they kill or attempt to kill their child, but many live in fear of aggression and with too little support. The father of the child is often absent from their lives.

This post is to highlight two things:

  • the need for good educational and behavioural management services for autistic children from the time they are very young. These services decrease the frequency and severity of behaviour which will become increasingly difficult to manage as the child gets bigger;
  • the need for effective  support, respite and residential services for young people and adults whose needs are greater than their families can provide.

Without these services more tragedies will happen. Some will be dramatic, others the undramatic dreading of each new day.

‘I was told my autistic son exhausted all the services when he was a teen, including the state mental institution after which he was returned home to my care. At times I feared for my life. I feared for the lives of my other children. I was only told my son had failed all the services my county had to offer and that I should call the police when he became violent’

 

A 6-year-old autistic child from Newport, Oregon, died after his mother, Jillian McCabe, allegedly threw him off of the Yaquina Bay Bridge. McCabe called police Monday night and admitted she had killed her son London McCabe, and the boy’s body was discovered in Yaquina Bay shortly afterwards. Jillian McCabe, 34, of Seal Rock appeared in Lincoln County Circuit Court  for a preliminary hearing on charges of aggravated murder, murder and first- and second-degree manslaughter. A motion is expected to be filed later by Jillian McCabe’s attorneys to request a determination on her fitness to proceed, court records show.

 

Kelli Stapleton pleaded guilty to trying to kill her child by carbon monoxide poisoning, and was sentenced to between 10 and 22 years in prison. She has previously  blogged about her struggles with care and treatment for her daughter, Isabelle, She pleaded guilty to shutting herself and her daughter, then 14, in a closed van with two lighted charcoal grills. Although found unconscious, both recovered.  The plea to a charge of first-degree child abuse averted a trial for murder and led to a three-day sentencing hearing. Supporters urged leniency for their friend who, they and Stapleton’s former husband have said, was beaten and hospitalised as a result of her daughter’s increasingly violent outbursts.

Gigi Jordan was convicted of manslaughter in the first degree for giving her 8-year-old son Jude, who suffered from autism, a fatal dose of prescription pills . She faces 5 to 25 years in prison. Her defence team managed to convince the jury with a strange tale, claiming Jordan had been trying “to save [Jude] from a life of sexual torture” at the hands of his birth father. Jordan said her husband at the time was plotting her murder, and she didn’t want the boy to end up back with his abuser. Both men denied the allegations. The prosecution argued that Jordan killed her son, who was nearly non-verbal, because of his severe autism.

 

‘You guys do not have a clue. I want to kill my son! Yes I want to get help but let’s be real there is no real help any more. There is no help because there is no money in our agencies to help. Thank you all who keeps the tax cut stuff going. You have destroyed the safety net for people with mental illness. The only treatment I have been able to find for my 29 year old son is a day program that offers some group therapy. For me it’s just a babysitting service. My son is mentally ill, autistic, and mildly retarded with rage issues. He is 6′ and 240 lbs. He is mean.. My family has  drifted away because of his behaviour. I am in fear of my own safety. So yes I want him dead or gone. I have even thought about putting him out on the street in an unsafe area of a major city near me and just let the streets take care of him. He will piss off the wrong  person and he will be dead.’

 

 Health officials say the murder-suicide of a Canadian mother and her autistic son should serve as a wake-up call that drastic changes need to be made within the system.The bodies of 40-year-old Angie Robinson and her 16-year-old son Robert were found inside their home in Prince Rupert, British Colombia.Robert could not speak and would often express his frustration by head-butting walls and people and pushing and shoving his mother.A suicide note left  and her final Facebook post, showed his mother  felt she could longer manage  Robert and that Family Services could not provide adequate support.

What is ordinary life like for disabled children and their families in Pennsylvania U.S.A.?

Posted on by under Childhood

The following story is deeply disturbing, not only because of the individual circumstances but because it seems that the family had a least two disabled children who didn’t go to school and who seems to have received no other services. Other reports mention at least one other child who is deaf. How can one of the riches counties in the world allow families to live like this?

This story has a particular resonance for me because my son Shaun has the same syndrome as the dead child. Shaun was very violent and difficult to manage as an 8 year old, but he attended a special school; attended a special adventure playground on Saturdays and during school holidays; and was a member of the Boys’ Brigade. Our life was difficult but service were there in the UK.

The mother of an 8-year-old Pennsylvania boy whose decomposing body was found on the third floor of their home said Saturday she didn’t know he had died until noticing the smell.
Kimberly Tutko said her husband was the primary caretaker of their mentally disabled son, and he waited several days to tell her the boy had died, Pennlive.com (http://bit.ly/1rXiJbV) reported. Police were called to the home Friday and found the boy’s body.
Police charged Jarrod Tutko, 38, on Saturday with child endangerment, concealing the death of a child and abuse of a corpse. Court records do not list an attorney for him.
Harrisburg police said in a statement that Tutko informed his wife about the death of their son, Jarrod Tutko Jr., “when the odour of decomposition became too strong.”
It’s not clear how the boy died. An autopsy is scheduled for next week.
The couple’s five other children were placed in protective custody.
Kimberly Tutko told Pennlive she understands people will find it difficult to believe she did not know her son was dead.
She said her son was severely mentally disabled and often difficult to control. He would rip up the flooring and carpeting of his bedroom, smear his feces on the floor and walls, and refuse to wear a diaper, she said. He had Fragile X syndrome which can cause severe intellectual disability and behaviour which is very difficult to manage.
He lived on the third floor and was primarily cared for by his father, while she looked after another disabled child who requires round-the-clock care and stays on the second floor, she said.
“My daughter relies on me,” Kimberly Tutko said. “I take care of her and my husband takes care of Jarrod Jr.”
Kimberly Tutko said her husband told her their son died Tuesday.
“I said to him ‘Why didn’t you say anything?'” she said. “He said he was too afraid to say anything because of other kids in the house.

It’s time to make hate crime against disabled people more visible

Posted on by under Adulthood, Childhood

Hate crimes against people with disabilities are widespread and often involve extraordinary levels of sadism. The first step in combating these shameful incidents is an acknowledgment that they exist. They are often unacknowledged and unreported.

HateCrimes

In Scotland a disabled man who has twice been the victim of serious assaults has urged other hate crime victims to be brave and go to the police.Stephen Cruickshank, 56, was tipped out of his wheelchair and kicked and spat on in separate terrifying attacks.The ex-pub boss admits he did not report the incidents because he was so traumatised.

Stephen suffers from spinal neuropathy and he struggles to walk, relying on his wheelchair to get around.
Last year a group of thugs tipped him out and ran off with his chair as he lay helpless on the pavement in Rutherglen, Glasgow.
In another incident, he had his walking sticks kicked away by a group of men who then kicked and spat on him while Christmas shopping.Workmen came to his rescue and urged him to contact police – but he refused and headed home.

Four years ago, Stephen got a severe kicking in Glasgow city centre as he struggled into town to buy Christmas presents for his wife Morven and daughter Hayley, now 10.“The attack was so vicious, I thought I’d never get up again.”
But now Stephen, who’s involved in a Police Scotland-backed scheme aimed at helping hate crime victims, says it’s time to take on the bullies.

Earlier this month it was revealed that there had been a 12 per cent increase in the number of reported crimes against the disabled.
But Stephen claims that many more incidents go unreported.
He reckons only one in five disability hate crimes are ever investigated by police. “The scandal here isn’t the increase, it’s the fact that so few of us report these crimes.
“I talk to so many disabled people across Scotland and there are lots of reasons why they don’t report crimes committed against them.
“People are scared of reprisals because often their abusers aren’t strangers.“Disabled people can be victimised by their friends, or even family members.”

Stephen now works at a Third Party Reporting initiative, which is backed by Police Scotland.
Helpers submit reports of hate crime to police on the victim’s behalf.
Stephen spends several days each week supporting other disabled people.

In the USA in February 2010, Jennifer Daugherty, a 30-year-old, mentally challenged woman from Greensburg, Pa., was brutally people pretending to be her good friends. Holding her hostage for days, the perpetrators allegedly tortured her, shaving her head, binding her with Christmas decorations, beating her with a towel rack and vacuum cleaner, feeding her detergent, urine and various medications and then forcing her to write a suicide note, before stabbing her to death.
The sadistic attack on Daugherty was anything but unique. Still, few Americans are aware of the special vulnerability of people with emotional, intellectual and physical disabilities to extraordinary violence.

Thirty-two states have hate crime statutes to protect people who have disabilities, but 18 states still do not.
Attacks on people with disabilities are often overlooked because many people are not aware of the extreme vulnerability to maltreatment that accompanies such disorders as cerebral palsy, autism, multiple sclerosis, learning disabilities and mental illness — even though, according to anonymous victim accounts from the Bureau of Justice Statistics, the 54 million Americans with disabilities experience serious violence at a rate nearly twice that of the general population. Their risk of being a victim of sexual assault is at least four times higher than that of people without disabilities. In 2008 alone, Americans with disabilities were victims of about 47,000 rapes, 79,000 robberies, 114,000 aggravated assaults and 476,000 simple assaults. Adding to the trauma of victimization, people with disabilities are much less likely than able-bodied victims to seek medical treatment for their injuries, often choosing, instead, to suffer in silence.

bullied3

 

The project Children with disabilities: targeted violence and hostility is currently looking at hostility, including violence, towards children with disabilities across the EU. It seeks to identify the legal and policy framework, as well as determine how information about such hostility is being collected. In addition, the project will look for examples of promising practices of how some Member States are addressing the problem. A report and comparative studies will be published this year (2014)

 

Support needed for the struggle Can you respond?

Posted on by under Adulthood

I have my life ahead of me but I don’t really feel like I can cope with adapting and making do for the rest of my life. I’m 21 old and have cerebral palsy. I struggle with depression a lot and although I admire some other disabled people for what they have achieved, I don’t really feel that I can do the same.

cerebral palsy1This picture and the one below illustrate aspects of cerebral palsy. They do not relate to the writer in this post

Nobody really understands my pain, I find it hard to watch everyone around me go to university, get a job, have relationships or go travelling and take everyday things for granted while I plod along. I’ve thought about ending it all but my family and friends would never understand and probably resent me for it but to me, but I sometimes feel that I have no other option because all I see in front of me is a life of misery and hardship. I hate it too much to live with it. I was just wondering if there was any advice anyone out there could give me? Have you ever felt a similar way? I’ve been on antidepressants on and off for about 6 years as well as going through counselling and visiting psychiatrists – I don’t mean to unload on anyone but I would like a perspective from someone who knows how it feels. It would help to know that I’m not alone.