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"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.
Be Ready Your Child's 18 and 22nd Birthdays
Take Charge of Your Older Child's Changing Needs
By: Lisa Jo Rudy, About.com Guide
Updated June 20, 2013
If the media is reporting accurately, there are an awful lot of parents out there who are surprised and appalled when their child with autism turns 18 and becomes a legal adult -- and even more surprised and appalled when they turn 22, and age out of the educational system. There are plenty of surprising things about autism, but this should not be one of them. Bottom line, children with autism do, in fact, become adults with autism. Whether or not you’re ready and set, here it comes.
What can you do to prepare for those inevitable moments when (1) your child becomes a legal adult and (2) your child ages out of the educational system? Here are a few tips to get you started.
- Plan ahead for your child’s 18th birthday. Even if your child with autism behaves as if he or she were much younger, the reality is that an 18 year old is legally an adult. That means, unless you have planned ahead, you have no legal right to manage your child’s finances, healthcare, or lifestyle choices. If you wish to continue to manage your child’s affairs, you’ll need to apply either for legal guardianship or have your child provide you with a healthcare proxy, financial proxy, and power of attorney. Do this immediately, as a medical emergency after your child’s 18th birthday could become a nightmare if you don’t have the legal right to make decisions on his or her behalf.
- Plan ahead for your child’s 22nd birthday. On that date – even if it falls in the middle of the school year – your child no longer qualifies for educational programs under the IDEA (Individuals with Disabilities Education Act). What will happen next? If you’ve been working with your school district and Vocational Rehab to provide your child with gainful or at least regular employment, you’ll be all set. If not, you may have a full time adult on your hands – and no options for how best to keep him or her engaged, employed, and happy.
- Set up a special needs trust. This is a legal entity that allows your child to have access (through a trustee) to funds you make available – but those funds are not considered relative to social security and other entitlements for people with disabilities. Don’t have extra funds to put into a special needs trust? That’s ok: you can set up the legal entity quickly and easily, and then make the trust the beneficiary of a life insurance policy. That way, your child will have funds to pay for his or her needs after you’re gone.
Feb. 21, 2013
The Machin boys are identical twins, but Harry was born with a rare disfigurement: his left eye, ear and nostril never fully developed.
Now that they are 7, Harry's face makes no difference to his twin Oliver, but their mother struggled for two years to love them equally.
"When I cuddled him for the first time, waves of terror swept over me," said Charlene Machin, 33, of Staffordshire in Britain. "How could I possibly love this little boy when he looked like this?"
"People assume that maternal instinct kicks in as soon as you hold your child for the first time -- but mine didn't," she told the Daily Mail newspaper. "I just couldn't love my son when he looked like this. Instead I just felt grief -- grief for a life that I felt had been taken from me, a normal life that should have been Harry's."
ABCNews.com talked to Machin's husband, Mark Machin, who did not want to participate in an interview. He said his wife was out of the country.
Today, her bond with Harry is loving and strong. But Machin's initial response, then her adjustment, illustrate the ways in which parents deal with the surprise of having a child who is disfigured. Advocates say that honest stories like theirs help others to accept the disabled.