Snatched from Michael’s round up. The presentation was on the 20th.
This evening, Jenn and I attened a presentation on Autism and Developmental Disorders at the local ARC, presented by Dr. Robert Naseef. He is a psychologist with over 20 years experience specializing in autism and 28 years experience in autism as a father of a classically autistic son.
He spoke in a manner that helped explain a lot about the condition that people may not have understood. I know that I think I have a bit better grasp on Malachai’s situation after listening to him. He answer everyone’s questions, so much that he ran out of time.
He had a handout of the slide presentation he gave, which I may be able to scan and share, just not tonight. He also had a few books he recommeded. BTW I am making the titles clickable links to Amazon, if you are interested. The first is called Voices From the Spectrum which he compiled. It is a collection of letters and essay by people with autism and their close families. It sounded very interesting and we picked up a copy at the presentation.
The next was a book called Letters To Sam which is a collection of letters written by a grandfather who is paraplegic to his grandson who is on the spectrum.
The last one I can remember (only because it is in the handout) is Dr, Thompson’s Straight Talk on Autism which is apparently a book that has many helpful guides and tip s for parents. It hasn’t been released yet so the link is for pre-order.
It was very helpful presentation and I highly recommend checking with your local ARC and see if he will be doing a presentation in your area.
Afterward, we went to Barnes and Noble picked up a couple books that seemed to be good.
The first is called The Autistic Spectrum Parent’s Daily Helper
which seems to be a book that is a combination guide to and aids to help get your autistic child’s day under control.
The second is called Different Like Me: My Book of Autism Heroes which has a fanciful illustration of a famous person who was/is autistic from Albert Einstein, Dian Fossey and Wassily Kandinsky to Lewis Carroll, Sir Isaac Newton and Andy Warhol. We thought it would be a great book to show Malachai as he gets older to illustrate that his condition doesn’t have to hold him back.
All in all, it was a very educational evening.
I asked about the autism vs. being five thing… and yes, he is being five, so in a year a lot of the stuff that irritates me he may very well grow out of. He won’t grow out of being autistic (though he might learn better ways to cope, and therefore “get better,” in the same way I might learn to cope with an irritant, even if it doesn’t go away) but the things that are a problem this year might not be a problem next year simply by his growing a year older.
I asked about not revolving our entire family around him. I wont do it. I said, I was that child. Apparently there is a book coming out called “The Other Child” so I’ll pick that up. It’s from the perspective of a special needs parent, who was a special needs sibling. Sounds like something I could have written myself. Anyway, he mentioned making special playdates with the other kids for one-on-one time. More or less what we are doing, are the things he mentioned.
I am making a calendar notebook for Malachai soon (I need to print some pages, our laser printer is out of ink and the ink jet is a waste of money as far as I am concerned, so maybe a trip to Kinko’s in the near future) – like in the next week – of his home schedule. I think I might make it a general family planner, but I’m not sure.
The presentation and handout touched on things that I never attributed to his diagnosis. Things like his toilet learning, food issues (OK, those I had, but not to this extent), general “lateness” in learning new skills. Dr. Naseef stateed that kids on the spectrum will learn, just later than neuro-normal kids. He used toilet training as an example, that the national average is 3, but ASD kids might be 3 – 6 or maybe later. Apply it to every milestone.
I just… I want to smack myself for not doing this sooner. Malachai is awesome. He is spot on with a lot, a lot of skills. Not so much with others. I can look back over my blogs from the past four years and I can see places where I questioned why he was or wasn’t doing something, or mentioned that something just wasn’t right. Why didn’t we get the testing sooner? I know why, and I don’t regret not pushing it or not listening to myself. I just wonder if he would have gotten more help, or whatever, if I had the time then to do all this, instead of waiting almost three years to address it. I am not blaming me, I am just playing the what if game. I hate the what if game.









