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My husband and I found out that our youngest son was deaf when he was around 3 months old. This news came after he spent a month in theNICU fighting for his life. He had passed the newborn hearing test that was given prior to him leaving the hospital, so when we were told the news, the shock was almost overwhelming.
The first thing that lead us to be concerned was the fact that our son would not turn his head to loud noises. He wouldn't get startled by the barking dog or a large truck that would go by the house. Babies have a natural reflex when they are startled. He never got startled. People could in and out of the door, there could be a lot of commotion, but the noises never seemed to bother him. Even his older brother running and hollering around the house didn't phase him.
At his 3 month check-up we brought our concerns to the doctor. At the time, we didn't actually believe that he was deaf but we felt that something was not quite right. The doctor set up a hearing test with the audiology department at the hospital. We went to the test and after, the doctor met with us to give us the news: Our son had profound bilateral sensorineural hearing loss. That meant that he had profound hearing loss in both ears. The damage was permanent and hearing aids may or may not help...
Read the full article at Christinascibona
U.S. Department of Education
Office for Civil Rights
Washington, D.C. 20202
More and more high school students with disabilities are planning to continue their education in postsecondary schools, including vocational and career schools, two- and four- year colleges, and universities. As a student with a disability, you need to be well informed about your rights and responsibilities as well as the responsibilities postsecondary schools have toward you. Being well informed will help ensure you have a full opportunity to enjoy the benefits of the postsecondary education experience without confusion or delay.
The information in this pamphlet, provided by the Office for Civil Rights (OCR) in the U. S. Department of Education, explains the rights and responsibilities of students with disabilities who are preparing to attend postsecondary schools. This pamphlet also explains the obligations of a postsecondary school to provide academic adjustments, including auxiliary aids and services, to ensure the school does not discriminate on the basis of disability.
OCR enforces Section 504 of the Rehabilitation Act of 1973 (Section 504) and Title II of the Americans with Disabilities Act of 1990 (Title II), which prohibit discrimination on the basis of disability. Practically every school district and postsecondary school in the United States is subject to one or both of these laws, which have similar requirements.*/
Although Section 504 and Title II apply to both school districts and postsecondary schools, the responsibilities of postsecondary schools differ significantly from those of school districts.
Moreover, you will have responsibilities as a postsecondary student that you do not have as a high school student. OCR strongly encourages you to know your responsibilities and those of postsecondary schools under Section 504 and Title II. Doing so will improve your opportunity to succeed as you enter postsecondary education.
The following questions and answers provide more specific information to help you succeed.
Read more at ED.gov
U.S. Department of Education, Office for Civil Rights, Students With Disabilities Preparing for Postsecondary Education: Know Your Rights and Responsibilities, Washington, D.C., 2011.
By KATHERINE STONE |
Recently, I shared here on Babble the myriad of problems that mothers face when it comes to beingscreened for postpartum depression. It’s not just screening that is inconsistent; it’s pretty much everything related to PPD.
If you go into a doctor’s or other healthcare provider’s office to talk about maternal mental health, you may or may not receive an official screening test, and if you do, it may be offered offhandedly and without compassion or information. You may be offered only one treatment option and you may be given very little information about it. You might feel as though you are not being heard or treated with respect. It may feel as though no one is able to spend much time with you or is interested in following up with you to make sure your treatment is effective and that you are recovering. You may even be given information that is completely incorrect about perinatal mood and anxiety disorders.
If so, you’re not alone. How do I know? I write the mostwidely read blog in the world on PPD and maternal mental illness, and I run a nonprofit that advocates for pregnant women and new moms with maternal mental illness. I talk to women from around the country and across the globe every day, and I know what’s happening to them. My belief is that, despite the fact that much progress has been made in the last couple of decades, we still have a long way to go, and it’s going to take the power of women uniting together and demanding more to get there.
Read more at Babble
By ELIANA TARDIO |
It has been more than 6 years since my daughter was born. Her unexpected diagnosis of Down syndrome kept me frozen and living with uncertainty for her first few weeks of life. I already had a child with Down syndrome, my 2 year-old son, and becoming the mother of two kids with Down syndrome really made me think of the future and my ability to take care of two kids with special needs.
In general she was a very healthy newborn. She was born two weeks before her due date (my water broke while I was running to catch my son in a pool party), but she was already a healthy 7 pounds and 19 inches long—pretty good weight and height for a baby with an extra chromosome. I delivered her after 12 hours of labor, with no epidural and no pain medicine. I always knew I wanted to be completely conscious when I first held her in my arms and welcomed her. I didn’t know if she would be born with Down syndrome, so I also wanted to look at her closely for any sign of condition. It turned out I didn’t need to, as her characteristics were very obvious and the nurse told me about her condition immediately after she was born.
The first thought that came to my mind was, “Oh my God. This cannot be happening to me again.” Suddenly I heard myself sobbing, but it was weird feeling. My mind was still processing but my body was already reacting to the biggest fear of my life: having a second child with Down syndrome.
Read the full list at Babble
What is an Autism-Friendly Performance?
Autism-Friendly Performances are designed and intended for families with children on the autism spectrum or who have other sensory issues. At these performances the theater environment will be altered, providing a safe, sensory-friendly, comfortable and judgment-free space that is welcoming for these families. Autism-Friendly Performances are recommended for those families bringing a loved one have a developmental disability, and their teachers and advocates who are familiar with and accepting of behaviors exhibited by some individuals with autism.
Q: Is this performance only for families of children with autism or other sensory issues, or can anyone attend?A: Autism-Friendly Performances are intended primarily for families with children on the autism spectrum or who have other sensory issues. In addition to altering the theater environment to cater to those with sensory issues, a main goal of this program is to provide a safe, judgment-free, comfortable experience for the entire family. We achieve this by recommending this performance for those families bringing loved ones who have a developmental disability, and their advocates who are familiar with and accepting of behaviors exhibited by some children with autism.
Read the full article at Boston Conservatory where showtimes, ticket pricing and full synopsis can be found.
Receiving the News
I remember very clearly the day our pediatrician told me and my husband about our daughter's disability. She had been born eleven weeks premature, and we knew she had suffered some brain damage during the emergency c-section, but despite those facts, we still hoped for the best. At six months old, we knew she was behind developmentally, but we thought it was because of her prematurity. At the doctor's office, however, we found out differently. He told us it looked like she had symptoms of cerebral palsy and that the best thing for her would be to get involved in occupational and physical therapy right away. My husband sat there, stunned. I held my sleeping daughter in my arms with one question racing through my mind. I had to ask, "Does this mean she could be in a wheelchair the rest of her life?"
When he answered, I began to cry and the doctor came over and hugged me and my daughter.
That was nearly five years ago. I did not cope very well with the news. I felt a myriad of emotions - sadness, guilt, overwhelmed, anxious, scared - all of which led me into a state of depression. If I had known then what I know now, I probably would have had an easier time dealing with this news. That's why I'd like to share.
Acceptance of your child's special needs can be very difficult. Every parent wants their child to be healthy and whole. "As long as my baby's healthy" is often what parents say when asked if they want a boy or a girl. When it turns out the baby is not healthy, it can be very traumatic.
The most helpful thing to accept what is going on with your son or daughter is to grieve what your child may never be. One of the things I had to grieve was that I might never be able to see my daughter take her first steps. A parent of an autistic child may have to grieve the loss of their child ever having an in-depth conversation. Depending on the child's disability, the grieving will be different for each case.
During the grieving process, remember that is okay to cry and to feel sad. It's important to feel these feelings instead of trying to stuff them down deep inside, which could ultimately lead to depression, as it did with me. The important thing is to not stay stuck in these emotions.
Read the full article at Carl Jean
By Disability Now
Sleepless nights, the terrible twos, sibling rivalry, grumpy teenagers – it’s not surprising that parenting is said to be one of the hardest jobs in the world. Add being a disabled parent and having a disabled child into the equation and it's more complex, says Emma Bowler.I have a rare disability called Kniest Syndrome which means I’m 4ft tall and don’t have the best mobility. I have two sons – Archie, aged eight, who also has Kniest and Ben, aged six, who doesn’t.
My initial parenting challenges were very practical – how would I get a baby in and out of a cot or highchair, bath him, or even get him from a to b?
I’m lucky to have a husband who is very handy: he adapted cots and scooters, and we found suitable products and tips via the internet, which has meant that I’ve always been a very hands-on parent.
But now both children are more independent and the practical challenges are being replaced with challenges that are more about meeting Archie’s social, emotional and medical needs. And finding a solution to these sorts of challenges is not quite so black and white.
Read more at Disability Now
"Do you mind me asking what is wrong with him?" Yes, I do.
By COURTNEY DAWSON Sunday 30 June 2013
I am the mother of a fantastic eight-year-old boy who is severely disabled. He has Autism, developmental delay, Cortical Vision Impairment, hearing loss and he is still learning to walk. He has no communication, he cannot feed himself and is still in nappies.
Last week I read the story about Miles Ambridge’s class photo(Mile Ambridge was a little boy in the US who was excluded from him class photo because was in a wheelchair) and it reduced me to tears.
I read it while watching Masterchef with my child’s Behaviour Support Worker (we are on a huge and exhausting eight-week journey to get kiddo to sleep in his bed all night) and I felt the tears burn in my eyes.
When I was alone, I cried. I am still crying. Not because of the outrage or blame or any of that, but because this story about a child with a disability was such real talk, real life – this is happening.
I felt really stupid that my son’s school photos came home on Friday and I was mad that he wasn’t wearing his adorable sweater in them. He was sitting in a row with his fellow special needs classmates, being adorable (as they all were, good looking little dudes!) and it never even occurred to me that he wouldn’t be included, ever. Owen attends an incredible special needs school in our area and I have never seen anyone excluded in a school photo. Or in any school activity.
Not every child with a disability has access to a special needs school, nor may their parents want to place their child there, but I wouldn’t have it any other way. At his school, the only way he is different is in his personality, likes and dislikes – just like any kid at any school – because all kids are different.
Parents create housing alternative for disabled
They become a nonprofit, raised their own money, bought their own property, hired a design team and a social services agency to staff a home. This month, six young men — with cerebral palsy, autism and Down syndrome — moved into a red brick Georgian on a lush block in the same Rogers Park neighborhood where they grew up.
Other parent-empowered groups are also rolling up their sleeves, joining this quiet crusade. A Glenview couple is working with Rush University Medical Center to construct housing for young adults with autism in the West Loop. In Wheaton, another family group collaborated with their church for a similar project.
They pushed clinicians for more physical, occupational and speech therapy and lawmakers toward mainstreaming policies. No longer hidden away, these youngsters were now woven into society, participating in school plays, soccer and Boy Scouts.
Then, at age 22, most publicly funded services end. As the kids get older, the journey gets lonelier. Some 80 percent of young adults with autism ages 19 to 30 still live at home, according to a 2008 Easter Seals study.
HOUSTON — The mother drives her son everywhere because he is not well enough to drive. He sits next to her, and at the red lights she looks over and studies him: how quiet he is, how stiffly he sits, hands in his lap, fingers fidgeting slightly, a tic that occasionally blooms into a full fluttering motion he makes with his hand, as if clearing invisible webs from his face. He is 19 years old, 6 feet tall, 250 pounds. His eyes are more steady than bright at this particular moment; his mouth is not set in a smile or a frown but some line in between.
“How’re you doing, sweetie?” Naomi Haskell asks.
“Fine,” Spencer says.
It has been 10 years since he began thinking his classmates were whispering about him, four years since he started feeling angry all the time, and two years since he first told a doctor he was hearing imaginary voices. It has been 20 months since he was told he had a form of schizophrenia, and 15 months since he swallowed three bottles of Benadryl and laid down to die, after which he had gotten better, and worse and, for a while, better again, or so Naomi had thought until an hour ago, when they were in the therapist’s office and Spencer said that his head was feeling “cloudy.”
“Wait —” she said, interrupting. “You described it as a cloudy feeling?”
Cloudy was the big, flying red flag that she had learned to dread. It might simply be a side effect of one of his five medications. But it could also be the quiet beginning of her firstborn son falling apart again, of hallucinations, or a dive into depression, or some other dimension of his illness that Naomi has yet to fathom.
“Yeah,” Spencer said. “Cloudy. It feels like these winds are blowing inside my head.”
A light turns red, and she glances over again.
“You’re feeling okay, baby?” she asks.
“Yeah,” he says, staring straight ahead.
This is what it is like to be the mother of a son with a severe mental illness — an hour-to-hour, minute-to-minute vigil. At a time of increasing public concern about the role mental illness might have played in mass shootings in places like Newtown, Conn., and Aurora, Colo., Naomi’s worry on a Tuesday in Texas is different. It’s about keeping her son well.
“Dear Friends and Family . . .” she had written last year, explaining her son’s illness and his suicide attempt. “I don’t believe I have fully processed the horror of my child suffering a level of torment so deep that it caused him to want to end his life. I’m afraid of what will happen to me if I think about it too much.”
So what Naomi is thinking about now is helping Spencer make it until Friday, when he has another therapy appointment, and when the effect of a new medication he has just started taking might become clear.