I have given this link to my daughter, as she was just stating today that she thinks she may have ME also. It may just be the Autism. We have noted several times that both she and I share certain “traits” in our illnesses. This may explain why.
I follow “Onward Through the Fog,” a blog on blogspot, authored by Erica Verrillo, a talented person who suffers from ME (Myalgic Encephalomyelitis). Her reports and research are top notch.
In this particular posting, Erica reports on the similarity of some findings affecting Autism and ME/CFS. These findings have to do with brain inflammation.
A John Hopkins study acts as confirmation that excitotoxicity caused by chronic inflammation is central to autism.
At The Mighty, we know that sometimes kids can offer us a brand new perspective on the world. So, we decided to ask our readers who are parents to share some of the wonderful, unique and funny things their kids have said about their disability.
These were your answers:
1. “‘I’m not Autistic, I’m Cara.’ My now 9-year-old daughter said that when someone called her autistic instead of saying she had autism. Well played, baby girl. Well, played.” – Kim Vivanco
2. “My cousin says she has ‘Up syndrome’ because she’s happy, not sad.” – Cassie Collins
3. “My oldest son is in fourth grade and decided he couldn’t do his math homework because of autism. Nice try, kiddo.” – Stephanie France Fry
4. “My husband’s student once said, ‘I know I’m special, but why do they call me Ed?’ – Liz Gorgue Rosas
5. “My 3-year-old daughter tells others she has ‘terrible palsy.’ One of these days she’ll be able to pronounce ‘cerebral,’ but today is not that day.” – Ashley Mobley
6. “Another child asked my daughter what her hearing aids were for. She responded, ‘They are like glasses for my ears!’” – Kerri Goff
7. “My 4-year-old daughter overheard her father and me talking about her autism diagnosis. She turned and looked at us and enthusiastically yelled, ‘I awesome!’ Best mispronunciation she has ever made.” — Kendra Hopkins
8. “Our daughter sometimes wears a gastric drain bag to empty food that is too much for her to handle. She gets a lot of questions and stares. Once, when she was about 6 years old, a woman after a long hard stare said ‘OK, I have to ask, what the heck is that?’ Our daughter, without skipping a beat replied, ‘It’s my own personal slushy, you want to try some?’ I could have exploded trying to hold in my laughter. ” — Kate Sytsma
9. “Our oldest son, Xavier said to a friend, ‘My brother, Cooper, has autism. Do you know what that means?’
Xavier: ‘It means he likes his hotdogs not touching his French fries and that we give him extra time getting out of the car.’
Friend: ‘That’s cool.’
Xavier: ‘You know what else is cool about autism?’
Xavier: ‘Everything. Especially Cooper.’” – Makenna Dubay
10. “My son has worn ankle-foot orthotics for years. He used to be embarrassed and hide them under pants. If someone would say something he would cry. Then, one day, he chose to wear shorts. He was asked by a child what happened to his legs and he said, without hesitation, ‘I fell off a cliff and lived to tell about it.’ The child’s eyes got big and then he walked away, and I turned my head and just about choked through my laughing. Through the sarcasm, my son turned a corner on his disability!” — Julie Bayles
11. “One year at camp another camper asked my daughter, ‘Why do you use a wheelchair?’ to which she replied, ‘Because I’m awesome.’ When that response wasn’t enough, the kid looked at a counselor and said, ‘No, really, why does she use that?’ The counselor then said, ‘Because she gets tired quicker than you… and because she’s awesome.’” — Alexis Snyder
12. “I have tics, and I don’t mean the bugs.” — Kristy Madden Kassebaum
13. “My brothers and I all have autism, but this was my youngest brother’s way of explaining his Asperger’s syndrome: ‘If my dad’s head was a golf ball, my head would be a beach ball.’ Nobody understood what he meant except him and me, and that’s all that matters.” — Hannah Walker
14. “God had to level the playing field a bit for everyone else, so he gave me spina bifida.” — Jake Siem
My daughter has an Autism Spectrum Disorder, along with depression and OCD. We did not learn until she was 21 about the Autism. (Thank you Reader’s Digest for the article that spelled it out for me.) By then, after being unsuccessfully treated for over ten years for anxiety and depression, she felt hopeless. As she stated to me, “None of the meds I have tried ever worked. Nothing changes and I will never be normal.”
Well she was right. She will never be “normal” (whatever that is), but she will always be herself! And that is perfect to me. I wish she could understand how much I love her and love herself just as much.
We work together with a therapist on life skills, and I believe I see glimpses of forward movement – or what the therapist and I see as such. To my daughter, it takes a lot of energy and is play-acting. It does not come naturally to her and, in most cases, she would be just as happy not to change.
Social skills? She has “friends” all over the world via the internet. What is so important about going out and interacting with others? She hates noise, hates to be touched and has no interest in any relationships.
The world is seen as black or white, good or bad. “Why are teenagers so stupid about life? I do not understand the chances they take and would never do those things.” As her mother, I can attest to the fact that I never worried about her drinking, trying the latest bad fad or lying to me about where she had been.
I feel lucky in the fact we are very comfortable with each other, warts and all. With my M.E., we even share some sensory problems that effect both illnesses. She likes that I can understand some of what she goes through and it makes our living together easier.
Most evenings you will find us in the family room, each with a laptop. I will share recipes, cat pictures and other items of mutual interest by turning my laptop to face her. She will share like items by sending me the link via Skype. Then she will turn in my direction and watch my reaction. Usually I have a comment or two. Sometimes I laugh out loud, maybe even “snort”. This will make her shake her head and smile. She tells me she is “laughing at my laugh”, not at what is on the screen. If it makes her “laugh”, I do not care how silly I act – it is a special moment – one of many that we share.
Autism – yet another “invisible illness.” While I have M.E., my daughter has an Autism Spectrum Disorder (along with depression and OCD.) Between the two of us, life is quite interesting! The following post tells of assumptions surrounding Autism – what it “should look like” and the frustrations these perceptions cause. Well stated.
One of the things that get under my skin, when people try to stereotype kids on the spectrum. The whole “image” in people’s mind of most kids with autism is what concerns me. Many of the people I encounter that are relying on a preconceived notion of what it’s like to have autism or be around someone like Em.
They expect something and when it’s not a certain way they are confused. It makes me feel like sometimes Em’s not “autism” enough for some as they can’t see it. They see her being social. They see her holding eye contact, or at least appear to. They see her maintaining conversations. They see her thinking outside the box and problem solving. They see her being kind. They see her being gentle. They see her showing empathy and emotions.
I’ve had people ask me if I’m SURE she’s autistic. I actually had…
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The history behind the linking of MMR vaccines to autism and the studies this lead to. Very informative.