Monthly Archives: May 2014

Is there an amusement park for people with special needs?

Video

How does 25 acres sound and FREE admission to the person who is disabled? Wheelchair accessible rides! One of my high school BFFs found this awesome place and moved her family to be closer to it.  Here is the video of her family!

This magical place is called Morgan’s Wonderland!

Their History:
In 2006, San Antonio philanthropist Gordon Hartman observed a poignant occurrence involving his daughter Morgan, a child with special needs, and a group of other children. All were on vacation splashing in a hotel swimming pool. Morgan appeared as if she wanted to take part in the fun, and the others exhibited similar interest in interacting with Morgan. Unfortunately, the connection never materialized.

Hartman thought then and there how wonderful it would be to create a special place for special friends. It would be an environment for inclusion and understanding. It would be an oasis for those needing a safe place to relax and enjoy the outdoors and each other. Hartman quickly learned that millions of children and adults with cognitive and physical challenges generally do not have access to facilities specifically established to assist them in enjoying the fun outdoor activities that able-bodied individuals have access to and often take for granted. What if everyone were free to “soar” beyond their perceived limitations?

Thus, Morgan’s Wonderland, the world’s first ultra-accessible theme park, began with a desire to re-imagine the possibilities of what an inclusive park could be. It evolved into a safe, colorful, 25-acre park that serves as a haven not only for those with special needs but also for their families, friends, caregivers and the public at large. Morgan’s Wonderland is a place where “kids” of all ages and abilities can have fun, and from the very beginning, it has admitted anyone with a physical or cognitive challenge free of charge.

To take Morgan’s Wonderland from dream to reality, The Gordon Hartman Family Foundation in 2007 established non-profit Sports Outdoor And Recreation (SOAR), a non-profit to raise money for park construction and to provide for quality, professional management. Funding began with an initial gift of $1 million from Gordon and Maggie Hartman in love and admiration for Morgan. Financial commitments from the City of San Antonio, the State of Texas, charitable foundations, corporations and individuals also contributed to the exciting endeavor.

In the spring of 2009, the Foundation broke ground on the former site of Longhorn Quarry in Northeast San Antonio to develop the one-of-a-kind family fun park. Construction of the $34 million park took slightly more than a year, and a festive grand opening occurred April 10, 2010, with actress and philanthropist Eva Longoria and NBA basketball legend David Robinson on hand as special guests.

Also in 2010, Hartman opened the STAR (South Texas Area Regional) Soccer Complex adjacent to Morgan’s Wonderland. This 75-acre soccer facility hosts practices, league play and tournaments for teams across Texas. All net profits go to non-profit Morgan’s Wonderland to help defray operating expenses as well as to expand programs and services for the special-needs community. A good example is STRAPS (South Texas Regional Adaptive and Paralympic Sports), which offers recreational and competitive soccer to both youth and adults with physical disabilities.

Hartman then launched Soccer for a Cause, a community-wide effort to bring pro soccer to San Antonio that resulted in the acquisition of a franchise in the North American Soccer League (NASL). The San Antonio Scorpions FC had an outstanding inaugural year in 2012, winning the NASL Regular Season Championship and averaging almost 10,000 fans per game. Like STAR Soccer, the Scorpions convey all net profits to Morgan’s Wonderland. It’s the first team in professional sports history to be organized for the benefit of a non-profit helping those with special needs.

In August 2012, global automotive giant Toyota announced its presenting sponsorship of the Scorpions’ new stadium, now known as Toyota Field. The 8,000-seat stadium and entertainment venue, which opened in April 2013, is expandable in stages up to 18,000 seats. Toyota also became presenting sponsor of Morgan’s Wonderland under a long-term philanthropic agreement.

Another outgrowth of Morgan’s Wonderland is Monarch Academy, a school for students with special needs that opened in August 2011. It’s a unique learning environment next to the theme park that enables students from ages 12 to 24 to reach their maximum potential.

Slowly but surely, Longhorn Quarry is being transformed into a destination – “Wonderland, Texas” – focusing on family entertainment, sports, recreational activities, concerts, special events and education. What’s truly remarkable is that everything that happens at Wonderland, Texas, benefits individuals with special needs. Everyone involved in Wonderland, Texas, offers deepest gratitude to all those now and in the future who care deeply about inclusion and positively changing lives. As Hartman continues to maintain, “Together, we can make a difference!” http://www.morganswonderland.com/

I hope I can take my family there some day!  Happy summer vacation planning!

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Understanding how having a child with Special Needs effects family life

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Like anything life can throw at you, having a special needs child can either bring you closer together or rip your world apart.  It is your decision to decide how you will allow it to effect you.  Here are some concerns you might encounter as well as solutions.  Who doesn’t like solutions?!?  Have a great day!

‘Effect on Family Life: Advice for families and caregivers

Having children with special needs affects your family’s life. Parents, siblings, and caregivers need to work together to support their loved ones, solve problems, and help with treatment and therapy.

Q&A for Special Needs and Effect on Family Life

The effect of special needs on families.
How having a child with a special need will affect your family’s life depends on what and how severe that special need is.

  • In general, you will probably be spending a significant amount of time and energy on your child who has special needs.
  • This can limit how much you have left to give to other members of your family, which can lead to problems in those other relationships.
  • To prevent that from happening, try to get respite care, which will enable you to spend time with others in your family and on yourself.?Respite care can be given by a relative, friend, neighbor, or special needs caregiver.
  • Try to spend some alone time with each of your other children every day and pay attention to their emotional status. They need your time and energy, too.
  • Marriages of parents of kids with special needs undergo a great deal of pressure. Work on holding your marriage together. Try to set aside time to spend alone with your spouse and to show appreciation for each other’s dedication to your child.

 

The divorce rate among parents of kids with special needs is frighteningly high. How can I prevent that in my family?
Here are some suggestions:

  • Take advantage of respite care and schedule time to be alone with your spouse — whether going out for an evening or taking a vacation alone together. One couple found that the first few days of their vacation were usually spent letting out all the frustrations they had held in until then, while the second half tended to be more loving.
  • Express appreciation frequently for all the things your spouse is doing to hold the family together.
  • Make time every day to talk to your spouse privately.
  • Be sure to celebrate anniversaries, birthdays, and special moments.

 

How can I give my other children what they need while also attending to my child with special needs?
Here are some tips:

  • Give your other children permission to express all of their feelings, positive and negative, about your family’s situation. Then acknowledge all the feelings, good and bad, as a way to give your child permission to feel this way.
  • Don’t give your other children too much responsibility for their siblings with special needs. Let them help, but don’t overburden them.
  • Pay attention to the moods of all of your children. If you notice any changes, specifically anxiety or depression, be sure to get that child help as quickly as possible.
  • Pay attention to what is important to each of your children, and try to spend individual time with each one regularly.

 

Work life as a parent of a child with special needs.
One of the ongoing problems many parents of children with special needs confront is that medical issues arise frequently and interrupt?the parent’s work life. Although employers may allow sick days and time to care for sick relatives, too often parents of kids with special needs require more time off than is granted, and as a result find it difficult to keep up with their job. This is unfortunate as these same parents may need the paycheck and medical benefits even more than other parents, but currently?there is no solution to that dilemma.

 

Down syndrome and family life
How might having a child with Down syndrome affect family life?Certainly, family life will be impacted in many ways.

  • Everything is slower with a child with Down syndrome, which means that more time and energy are spent on that child’s needs. This means there is less time for others in the family.
  • Feeling “different” when out in the world can make families reluctant to do things other families do. Some families resent stares; others become accustomed to them.
  • In some families, the other siblings resent the fact that the child with Down syndrome gets more attention.
  • Some siblings are teased about their “retarded” sibling.
  • On the positive side, siblings may become more sensitive to others and less self-centered than they otherwise would have been. Studies of families of children with Down syndrome have found that the siblings tend to be more mature than other kids their age, more accepting of differences and more understanding of the difficulties others may be having — in general, more empathic.
  • Some families do well; others do not.

 

Epilepsy and family life
My child’s epilepsy has upset his sibling. How should I handle that?Here are some suggestions:

  • Witnessing the seizure of a sibling can be very frightening to a child.
  • Educate your other children about the illness and prepare them for witnessing seizures, explaining how long a seizure will usually last, what will happen during and after it, and what they can do to help. Knowing what to expect can ease a sibling’s anxiety.
  • Some children misunderstand the cause of seizures and blame themselves for a sibling’s epilepsy. Let them know that they are not to blame.
  • Some siblings may fear that the epilepsy is contagious. Reassure them that this is not true.
  • Some siblings feel that they will be harmed by the stigma of having a sibling with epilepsy. Encourage them to educate others about epilepsy — that it is a medical condition and not a cause of shame.
  • Some siblings resent what they perceive as the child with epilepsy being favored in order to prevent a seizure. Try to treat all children in the family the same, despite the epilepsy, if at all possible. And try to give your other children equal attention.

 

Celiac disease and family life
I’m not sure whether to make our home gluten free for everyone, or to just prepare gluten-free foods for our child who has celiac disease?When one person in the family has celiac disease it affects everyone. It is usually recommended that the home become gluten free. This will involve explaining the situation to the whole family and setting up clear rules about what can be brought into the home.

How do siblings of kids with celiac disease handle the deprivation that they suffer if the home is made gluten free?

Of course, most siblings will resent being forced to follow the celiac disease food restrictions while at home. You may want to help mitigate this by:

  • Scheduling time to take your other children out for special treats that are not allowed in the house.
  • Encouraging your other children to ask their sibling what having celiac is like, how he or she is feeling, what it is like to go see so many doctors.
  • Inviting your other children to become part of the solution as a way to give them a sense of mastery over the situation and feel included rather than left out.
  • Asking your other children to help shop for gluten-free products, cook new recipes, taste new food.

 

Besides resentment, are there other feelings siblings may have?

Kids may have a range of reactions. It would be helpful to give them permission to have their varied reactions and not to express disapproval of them. Let your children know that you understand and accept their feelings.

  • Some feel vulnerable and worry that they or their parents will develop an illness. They may become phobic, sure that the slightest pain is the symptom of something serious.
  • Some worry about their sibling who has the disease.
  • Some are angry that their sibling receives so much attention.
  • Some feel guilty, fearing that they caused the disease.
  • Some wish they had the disease, so they could get all the attention.

 

FXS and Family Life

What challenges does FXS present for a family?

Challenges occur both out in public and within the home.

Out in public:

  • Learning how to feel included in the community without apologizing for your child’s behavior can be a difficult lesson.
  • Trips to the dentist or doctor can be traumatic for all concerned. Kids may become anxious and develop hypersensitivity in either office. They could act out in ways that disturb personnel or other patients. Going over exactly what will occur in advance, and in what sequence, may mitigate some problems.
  • Any family activity (such as dining out or attending church and cultural events) becomes difficult and requires special preparation. Some families prefer to have one parent stay home with the child who has FXS while the other goes out with the other child or children.

Within the home:

  • One woman expressed gratitude that her husband was so supportive and that their relationship had stayed strong despite the high divorce rate among parents of children with special needs. Her daughter, however, finds it hard to comprehend why her brother gets to do things she doesn’t and why her mother has so much trouble managing him.
  • Many children with FXS have unusual sleep patterns, difficulty falling asleep, hypersensitivity to fabric which makes them uncomfortable wearing pajamas, and may wander about the house at night or wake up at an unusually early hour. As a result some families install gates or half-doors to prevent their children from wandering. Others find that establishing a bedtime routine and creating a soothing environment can help.
  • Many babies with FXS have trouble with both bottle feeding and nursing due to oral motor weaknesses which make sucking difficult.
  • Due to problems with inadequate oral sensations, some children with FXS can’t tell they have too much food in their mouths until they choke or gag, and can be messy eaters.
  • Some find that silverware is over-stimulating and so prefer to eat with their fingers.
  • Dressing can be a problem due to poor muscle tone and extreme sensitivity to clothing.
  • Many boys and men dislike washing and brushing their teeth due to hyper-stimulation when they do them.
  • Due to poor bodily cues, many kids with fragile X have problems with toilet training.

Within Oneself:

  • Some parents (particularly carriers of the FXS gene) find it difficult not to blame themselves for their child’s condition.

 

Cerebral palsy and family life
How will having?a child who has cerebral palsy affect our family life?That will depend on how severe your child’s condition is.

  • In general, you will probably be spending a significant amount of time and energy on your child who has cerebral palsy.
  • This can limit how much you have left to give to other members of your family, which can lead to problems in those other relationships.
  • To prevent that from happening, try to find respite care, which will enable you to spend time with others in your family and on yourself. Respite or ongoing care can be given by a relative, friend, neighbor or paid caregiver.
  • Try to spend some alone time with each of your other children every day and pay attention to their emotional status. They need your time and energy, too.
  • Marriages of parents of kids with special needs undergo a great deal of pressure. Work on holding your marriage together. Try to set aside time to spend alone together and show appreciation for each other’s dedication to your child.
Mid-level autism and family life
How does autism affect family life?Here are two perspectives:

A mother’s perspective: “The child with autism sucks up your physical, financial and emotional resources, leaving little left for the rest of the family. You invest your time, financial, physical and emotional resources and don’t get that much in return. It takes a?huge emotional toll for the rest of your life, yet brings very little joy.

A sibling’s perspective: When Danielle Chelminsky was 16, she wrote: “I hated that my brother’s needs came first and he got more attention than I did. ‘I wish I had autism so you would play with ME for a change!’ I would think. I thought my parents loved my brother more than me. I resented him, and blocked him out of my life. I was closeted about him since I thought his disability made my friends judge me. I hated being his sister.”

Did the experience of having a family member with autism lead to any wisdom or helpful insights?

One 16-year-old sister said, “Ben will never go to college or have his own family – things that we consider to be normal. Yet who is to say “normal” people are necessarily happy? Ben, on the other hand, is. Being a simple-minded kid, simple things make him happy. He likes Chinese food, swimming and playing the recorder. No one knows exactly what he is thinking, yet the smile on his face while dancing at his bar mitzvah makes me wonder if he is the one who is normal and we aren’t. We make our lives so complicated; we take for granted what we have. Why don’t little things make me as happy as they do for Ben? Maybe Ben isn’t a complete tragedy. Maybe he was put in our family to teach me something about myself.”

How can I handle being out in public with my child who has autism?

Parents of children who have autism learn quickly that public outings need to be planned for and that the child has to be prepared for what to expect, step by step. Doing so can make a hellish experience into a manageable one. Nevertheless, parents need to be prepared for disapproval from members of the public who don’t understand.

 

Asperger syndrome and family life

How does Asperger syndrome affect family life?

Here is what one mother said:

“His issues affect our family life usually when his anxieties or fears come into play. We went to a Halloween Party and he spent all night upstairs because someone was dressed as a bloody doctor. The fake blood freaked him out. When he becomes upset over something, he can yell, scream, or just hide. This odd behavior embarrasses his sister. When we go away or out to eat, she always feels people are looking at him. And they are not. She is very conscious. She loves her brother, and interacts beautifully with him, but when others are around, she is very embarrassed of him. She is 9. 

We limit ourselves on the activities we do as a family. We don’t go to the movies usually. We would not go to an amusement park like Disney because of his fear of dressed-up characters. But we do go hiking and spend time with family. We like to find ways to get out and enjoy the community yet keep him protected from the things that scare him. 

Over time he has gotten better. His anxieties have lessened and how he reacts to anxious moments has gotten a whole lot better, overall. We try not to seclude him, but expose him to things with a protective net–so to speak. It takes planning and thought when we go out. 

We realize the difference when we just take our daughters. The trips we take are so much easier, we are not on edge wondering what he will say or what he will do.”

 

Severe Autism and family life

What is it like to be the parent of a child with severe autism?

It is very difficult to do anything else in life when you live with a child with severe autism. That child is extremely needy and the caregiving is all encompassing. It is hard to separate from meeting that child’s needs.

 

How can I find a caregiver for my child with special needs?
Care.com is a website that lists caregivers throughout the United States who provide assistance to people with special needs. You can search for caregivers near you and review caregiver profiles including photos, references and background checks, and work history. For specific listings of special needs caregivers, go to Care.com’.

http://www.care.com/special-needs-effect-on-family-life-p1167-q227936.html  

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Ever Wonder What it is like to have a Disability? Here you go…..

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Yes, I Know I already posted once today but it is my day off and this video crossed my mind.  I wanted to share it with YOU. It is an amazing look into what Autism feels like.  Brings tears to my eyes.  I can’t imagine living life like that.  What amazing patience these individuals have!

This Groundbreaking Video Makes You Autistic for 2 Minutes  

This is breathtaking. See inside the mind of someone with autism, and you’ll never look at people with this condition the same way again:   

http://www.faithit.com/autistic-for-2-minutes-couldnt-believe-how-it-felt-groundbreaking/

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The biggest problem for parents of a child with special needs?

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If it isn’t hard enough to get out of bed some days, sadly dealing with rude comments from other people can push you over the edge!  My son looked slightly different but he was VERY ADHD and people thought it was due to poor parenting or a naughty child and just didn’t understand.  Made me feel sad, angry, guilty, etc.

In this article, Joanna Moorhead meets mothers who have inspired a new Mumsnet campaign to change people’s attitudes towards children with disabilities.

‘Jane McCready is used to her 10-year-old son being gawped at “as if he were a circus freak” but she will never be reconciled to it. “Children are one thing, they don’t know any better. But these are adults. They look at Johnny and their mouths fall open and they just stare. And I think: didn’t anyone ever tell them how rude that is?”

Johnny has severe autism and learning disabilities. “He looks like any other child, but he behaves oddly – for example, he might sit there banging two toys together – and he sometimes makes strange noises.” Especially when he was younger, he might have a massive meltdown – at the supermarket checkout, for instance. “I’d feel 300 pairs of eyes on us – all watching us, all judging us for being disruptive and difficult,” says Jane. Perhaps the worst day was when, at the swimming pool, another mother pulled her child away from Johnny “as though he had something catching”.

This, she says, is what you are up against when you have a child with special needs: other people tend not to be very kind. Which is particularly awful “because you’ve already got so much on your plate as it is. The odds seem stacked against you, and if people just gave you a bit of space and support, it would go a long way. But the opposite is more often the case: you’re struggling to start with, then people knock you down further. They make assumptions about you, they find you wanting, they treat your child as though he or she is dangerous or badly behaved. It’s soul destroying. It’s so bad, so hard to deal with, that I have friends with special needs kids who don’t even take them out any more.”

Jane, 49, who lives in south London, turned to Mumsnet to vent her feelings; and she was not the only parent in her situation to do so. Mumsnet members who didn’t have children with special needs were shocked at their stories, and so too were the women who run Mumsnet. “We realised how incredibly hurtful some of the behaviour they were describing was, and realised we should do something,” says co-founder Justine Roberts. “It’s about letting judgmental feelings go and stopping all the tutting from the sidelines.

“The truth is that it’s incredibly tough to have a child with a special need such as ADHD or autism. In many cases, it’s a 24/7 job and to have to suffer the prejudices of others on top of that is just too much. There’s a strong feeling on Mumsnet that how we look after our most vulnerable says a lot about our society and you don’t get much more vulnerable than children with special needs. So we need to up our act a bit, as a society.”

To that end, Mumsnet this weekend launches This is My Child, a campaign aimed at getting us all to think a bit more about the realities of life for families with children who have special needs and to check our behaviour accordingly.

“A little bit of help goes a long way,” says Jane. “One time Johnny was melting down and this woman approached me. I thought she was going to complain – you get people who say things like, all he needs is a good slap. When she said ‘What can I do to help, dear?’ I could have hugged her. It must have taken some bravery for her to do it, but it made such a difference to me. I felt someone was on my side rather than the usual wall of hostility.”

Claire Champkin, 40, who lives in Twickenham, Surrey, knows just how Jane feels. she says the biggest difficulty about life with six-year-old Toby is the negative attitudes of others. Her son has moderate-to-severe autism, and is largely non-verbal, but dealing with the realities of his condition pale next to dealing with the unkindness she encounters from strangers who decide for themselves that he is simply a badly behaved child with an inadequate mother. “One day we were in the park, and a father who was sitting on a bench pushed his glasses down to the end of his nose and sat there staring at Toby in evident disapproval. I felt like heading across to shout and swear at him, but you can’t do that.

“What do people think gives them the right to behave that way? And the irony is, they think they’re making a judgment on my child’s bad behaviour.”

Amanda Marlow, 43, who lives in Milton Keynes, says she has survived by growing a skin so thick she doubts anyone’s disapproval could penetrate it. “Sometimes I think if I marched through the shopping centre with ‘fuck off’ written on my forehead, I couldn’t be more obvious about it,” she says.

She has four children, twins Elizabeth and James, 13, Oliver, seven, and Alex, six. Elizabeth has Treacher Collins syndrome (which causes craniofacial abnormalities); James has Asperger’s syndrome and Alex has severe autism.

“What I’d like people to understand,” she says, “is that these are my children. This is my life. It’s not a bed of roses, but we try to make the best of every day. What would be nice is if people were kind and considerate once in a while, and gave us a bit of space. We’re dealing with issues that most people haven’t got a clue about, and it’s intrusive when you get someone coming up to you and saying, he needs a clip round the ear when one of them has a tantrum.”

If Amanda, Claire and Jane could ask the rest of us to do just one thing, it would be to stop staring. “It’s fine to do a double take, but once you’ve taken in that our children have a disability, get on with what you’re doing. It doesn’t give you the right to gawp,” says Claire.

Beyond staring, what angers Amanda is when strangers ask about Elizabeth. “They say, what’s wrong with her? And I say, nothing’s wrong with her. She’s fine.”

Claire agrees: it’s not a tragedy, she says, that her child has a disability. “We don’t need pity; we’re a very happy family and we just want to get on with our lives. I hate people calling me ‘special’ or thinking I somehow have extra qualities that enable me to deal with all this. The truth is that when it happened to me, I thought I couldn’t cope.

“But a very wise person said to me: ‘You’ll cope because you have to.’ And that’s what anyone would do. Calling us ‘special’ or alluding to our great qualities makes us different, sets us apart, and we don’t want that at all.”

What is also irksome to many parents is when other people take it on themselves to reassure them that all will be well. “I get that all the time,” says Ellie Grant, from Wiltshire, whose three-year-old daughter Roberta has the chromosomal disorder Kabuki syndrome. “Roberta had hip dysplasia and, when she was in plaster, people would say: ‘She’ll be walking soon enough and you’ll wish she wasn’t.’ That’s so hurtful – the idea that when she does one day walk, I’ll wish she couldn’t.”

The other thing they often say is how gorgeous and cute Roberta is, as if that is somehow incompatible with a disability. The people you value most are those who just treat you as they would any other family. I love it when people meet us and they try to engage with Roberta, just as they would any other child; that’s so good. What I don’t need is sympathy; I’m hugely proud of my little girl and all she’s achieved. She and her baby brother are the centre of my world and the idea that people feel sorry for me is just so misplaced.”

There are around 770,000 disabled children in the UK and, says Justine Roberts, their families deserve better. “A lot of it is about raising awareness about the reality of their situation, and busting some of the many myths. There’s a myth that some disorders, such as autism and ADHD, are a fashionable excuse for bad behaviour and bad parenting. Wrong: these conditions are real and disabling and it is terrible that the parents and families of those with them are stigmatised.

“Another myth is that children with disabilities are given the help they need. In fact, Mumsnetters tell us time and again about how little help there is, how much they have to fight for everything they’re given and how long it takes even to get their child’s condition diagnosed.”

Another myth, says Justine, is that language around disability doesn’t matter. “You get a lot of people who use words like ‘retard’ and ‘mong’ and for some reason that’s tolerated, while language that’s racist or sexist or homophobic definitely wouldn’t be. We’ve learned how hurtful it is to families where there are disabilities, and now we clamp down on it on the site – and we’d like others to do the same. It really is important. It really does make a difference.”

What you can do

• You can’t always tell when someone has a disability. Respond kindly, not judgmentally.

• Don’t make assumptions about a child’s potential based on a label. People with disabilities have a range of capabilities, just like anyone else.

• If people seem to be struggling, ask: “How can I help?” or “What do you need?”

• Saying “at least it’s not cancer” is not helpful.

• If there is a child with a disability in your child’s class, invite him or her over to a playdate, or include him or her on the birthday party list. Too many parents of children with special needs kids say their kids miss out on peer activities.

• And one last time: don’t stare. Really. Just don’t.’

Source: mumsnet.com/campaigns/this-is-my-child

More information at mumsnet.com/campaigns/this-is-my-child

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What Do Mothers Of Children with Special Needs and Combat Soldiers Have In Common?

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In this blog, I will be sharing articles from other websites, because I feel that the information might benefit families with special needs children of all ages. I will also be sharing my personal experiences, as a special needs mom, as well as experiences of others.  I could really relate to this article regarding stress.  I bet you can too!

What Do Mothers Of Children with Special Needs and Combat Soldiers Have In Common?

STRESS

“Stress is something most parents experience. Yet the stress of raising a child with special needs is compounded. Two major research studies are a wake-up call for mothers of children with special needs.

2009 Nobel Laureate in Physiology and Medicine, Elizabeth Blackburn, discovered in a study of chronically stressed mothers an average shortening of their life expectancy by 9 to 12 years. The University of California San Francisco biochemist studied mothers who had reared children with special needs for 15 years.

These mothers experienced the shortening of their telomeres due to stress. Stress interferes with cellular replication that keeps a person young. DNA replication is prevented when the protective tips of the chromosomes, the telomeres, fray.

Five Things that Contribute to Stress and Ways to Manage Them

In a separate study, Marsha Mailick Seltzer, Ph.D. at the University of Wisconsin-Madison found mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers.

The moms were observed for eight days over the duration of the study. It was discovered that the mothers had significantly low levels of a hormone associated with stress; levels that are associated with chronic health problems and may affect glucose regulation, immune functioning and mental activity. These low levels were also consistent with people experiencing chronic stress, such as soldiers in combat.

Researchers followed up on Seltzer’s study with the same group of mothers. Interviews were conducted about how they spent their days and compared with data from a national sample of neurotypical developing children.

Mothers of children with autism reported spending at least two hours more each day care-giving than mothers of neurotypical children. They were also interrupted at work on average one out of every four days compared to less than one in 10 days for other moms. Lastly, mothers of children with autism were twice as likely to be tired and three times as likely to have experienced a stressful event.

“On a day-to-day basis, the mothers in our study experience more stressful events and have less time for themselves compared to the average American mother,” stated Leann Smith, a developmental psychologist working on the study. “We need to find more ways to be supportive of these families.”

Despite the bad news about stress and moms, research also shows that mothers of children with autism and other developmental disabilities were just as likely to have positive experiences each day, volunteer or support their peers as parents of children that were neurotypical. Identifying and managing stress is an important step towards also enjoying the experiences that are more positive.”

References
“Autism Moms Have Stress Similar to Combat Soldiers.” Disability Scoop. November 10, 2009.

“A 2009 Nobel Prize, Stress and Bullying at Work.” Workplace Bullying Institute. October 26, 2010.

See more at: http://www.abilitypath.org/love-laugh–live/stress-relationships/coping/articles/mothers-of-children-with-special-needs-and-combat-soldiers.html#sthash.zdAzBj0a.dpuf

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Remembering the first few days of motherhood

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My son is now almost 23 years old.

We have been through a lot with him over the years but I still remember when he was born.

 

Day 1 My son (who has multiple disabilities) was born 2 weeks late and due to fetal distress, he was taken emergency c-section.  Initially, we didn’t know why he was in fetal distress but we would know soon.  His apgar scores were 8 and 9.  Since he was a c-section, I was in the hospital for a few days.  Rooming in was quite popular.  Even though this was my first baby, things just didn’t seem right.  He wasn’t catching on to nursing and would sleep a lot.  He would act like he was starving, I would try to nurse him and then he would be so exhausted that he would fall asleep and not eat.  I was a bit worried but I was assured it was all normal.  I persisted with my concerns and Day 2 they took him away to check him out.  Doctors would periodically come by and give me updates but the tests were inconclusive.  Day 3 I was told that there seemed to be an issue with his heart and he would be transferred to another hospital to have some further testing.  I was still stuck in the hospital recovering and my baby was now taken away by ambulance.  Scary times…(to be continued)

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Welcome to Holland!

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When my son was first born I remember someone passing along this poem to me.  Life with a special needs child is quite a different life! It can’t be categorized as bad or good necessarily as Emily Perk Kingsley describes……

WELCOME TO HOLLAND

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…… When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands.

The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say.

“What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there.

And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

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