Happy13 on Autisable

Sunday, 22 May 2011

I'll Do It My Own Way, Thank You Very Much

As I previously mentioned, my oldest has autism. Just a few things I'd like to say on the subject. NOT ALL CHILDREN ON THE SPECTRUM ARE THE SAME. Look, I know I'm yelling, but hell, I'm getting so tired of people on all sides. As a parent you're damned if you do and damned if you don't. I very rarily go to autism sites on the web because people are SO nasty or militant. Everyone thinks they have the answer and their answer is the only one. People for or against biomedical treatments, people who think you're abusing your child if you vaccinate, people who think you're abusing your child if you don't vaccinate. Do this, do that, don't do this, don't do that. BLAH BLAH BLAH BLAH.

Woe-is-me-ers- If you make your life only about autism and how horrible it's been for you, you will alienate yourself and make living joyless. I understand the fear and grief you go through when your child is going through evaluations and is ultimately diagnosed with ASD. One day you have certain dreams and expectations and the next they are altered significantly. Grieve for those dreams, you deserve it; however, at some point you've got to wipe the tears away and get to work. We don't do our amazing children any good by wallowing in self-pity. Remember, we can and should still have dreams and expectations.

"I am so sorry." Don't be, I'm not. This is a common response when I tell someone Xander has autism. I understand that it can be very uncomfortable for people and they have no idea what to say. Don't say "I'm sorry." My child is not a tragedy. Ask me questions. I have no problem discussing ASD. I want people to be informed. Xander has autism; however that's not what he is. He is a phenomenal reader, hates math, is a great cuddler, can tell you the make and model of any car. He is beautiful, he has a sense of humor, he loves to be tickled. He is sweet and wonderful. He teases his brother, ON PURPOSE.

"Why aren't/are you doing Gluten Free/Casein Free?" Tried it, didn't work. Xander doesn't have gut issues. There are many it works for, but NOT EVERYBODY.

"Must've been the vaccines that did it." Nope, try again. Xander is not vaccine injured; he has infantile autism, not regressive. Looking back at videos of him as an infant, I can see signs as early as 5-6 months. I do believe there are children that maybe vaccine injured but not ALL of them.

"Make sure you give him supplements." Tried it, worked a little, he stopped eating and drinking certain things because he suspected the supplements were in it so what's the point? Plus, they're very expensive, upwards of hundred bucks a month.

"You need to chelate." We did it. Had some results, nothing life changing.

"What has worked for you?" I understand that many people out there are all about biomedical treatments, but they really didn't do much for us. I gotta say, the most effective treatment we've done is Berard AIT. We saw changes within 24 hrs and are still seeing improvements. The increase in his language skills and eye contact is amazing. Facial expression recognition therapy was another treatment that helped a lot. He is much better at recognizing peoples emotions. The treatments that seem to work best for him are those that involve interaction with other people, for example, OT, speech therapy, being in an inclusion classroom.

This is an example of Xander's progression before, during and after Berard AIT:

I'm not looking for a cure for my boy. I really like him the way he is. I love the way he flaps and jumps when he's excited. This means he's happy. I just want to give him, to the best of my and his ability, the skills that will carry him through a happy and productive life. Isn't that what any of us want?

People can tell me what I should or shouldn't do, but in the end, I'll do it my way, thank you very much.

Thursday, 12 May 2011

Not Broken

I watched a documentary the other day that got me to thinking. I know, dangerous, eh? The documentary was about three young men at different places on the spectrum. One was non-verbal, one was moderate and the other had Asperger's. The non-verbal boy and the boy with Asperger's seemed very comfortable with their autism. The young man with moderate autism was frustrated and kept on talking about his brain being broken.

I asked myself, "Why such a difference in attitude?" The answer became obvious. It was the views on autism by those around the individual on the spectrum. I heard not one negative word about autism from any of the people around the two who seemed happy. The boy with Asperger's said he viewed his autism as an asset. The non-verbal boy was surrounded by neuro-typical teens and adults who treated him with respect. The unhappy boy's parents said his brain was plagued with autism. They constantly spoke about it as a disease. They did all of this in front of him. It was very apparent that the parents who spoke negatively loved their boy. I honestly don't think they realized how their comments affected him. They often talked around him to others. When others talk about you as being broken or plagued, you're eventually going to believe it.

I understand that dealing with the symptoms of autism can be very difficult, especially for the caretakers. There are many that view it as a disease and use words like "afflicted", "broken", and "suffers from". Negative words are often sharper than any blade. Research shows more and more that individuals with autism are aware of everything that goes on around them and that includes conversations. Just because someone can't verbalize their feelings doesn't mean they don't have them. Rail against autism, hate it if you want. Make yourself miserable with constant negativity. That's your prerogative. Just keep it away from your kids. You don't have the right to suck them into your blackhole of misery.

Andy and I are very conscious of what we say around Xander. I don't ever want him to have that feeling of self-loathing. It would absolutely break our hearts. I want him to know that he's not broken.
I Love My Boys

I'll be using some of my blogs already posted at another site to start with. This one was originally posted February of 2010.

I have two sons. One is almost 8; one is 5. One has autism; one does not. One is Xander; one is Spencer. They are polar opposites.

Xander is the soon to be 6 year old with autism. He is painfully sweet. There is something about him that makes me hold my breath. I have an overwhelming need to protect him. Everyone who meets him seems to catch this same desire. He is beautiful, tall with big, staring brown eyes and a mop of blond curls that beg to be touched. His autism gives him an innocence and honesty that isn't present in other children his age. When he laughs, he is happy; when he cries, he is sad or hurt; when he yells, he is angry. I never have to guess; it's always there in his face or actions. He is my cuddler.

Spencer, obviously, is the 5 year old. He is also very sweet; however, he is also VERY mischievous. He is smarter than me, much smarter. I have to remind myself that he is 4. I also feel the need to protect him, most often from himself. He is also beautiful and tall. There is no name for the color of his eyes. They are blue and/or green and/or gray and/or golden. Sometimes they are all four. His hair is blond and uncontrollable, often like him. He is charming and loves everyone he meets. He has no preconceptions other than the expectation that you will love him as much as he loves you. He is quick to show you his "cool tricks". He is my entertainer.

Xander and Spencer are typical brothers. They play, they laugh, they fight. Xander is usually the one on the receiving end. This is good because Spencer forces Xander to stand-up for himself. Having Spencer is the best thing we ever did for Xander. Had Xander been diagnosed before we got pregnant with Spencer, there would have been no Spencer. What a tragedy that would have been for all of us. He makes Xander play with him; he requires Xander to engage with him; he does not allow Xander to withdraw. Spencer, in many ways, is Xander's biggest advocate without even trying.

I love my boys.