Progress Report.

Just remember. A kid is always a kid, no matter what "label" we have given him. Work on the things that would be normal issues for you no matter what. Simon is so lucky to have parents who care so much.

ahh yes, we're always questioning ourselves, aren't we? our grace is 4 1/2 and i, too, have no frame of reference. i have been advised by our speech therapist, though, that we have to remember that grace is 'only 4 1/2' (we were discussing her inclusion program in pre-school). and recently i've been attending some of the local autism group seminars and i'm learning that we really don't have many 'issues' compared to some of the things i hear from other parents. go with your gut, but don't assume Simon doesn't understand. we were doing that and grace has proven over and over that when she wants to understand, she will. another good tidbit i got from one of the seminars is to remember that 'parents make the rules'. an autistic child that is left to make the rules (i.e. who sits where, who opens and closes the doors, etc., because we don't want to/can't deal with the resulting negative behavior) is headed in the wrong direction.
congrats on the autism badge and your project idea!

Blessings to you Ali! May you continue on your path of inspiring us all and giving so generously not only to your family, but to your world!
Thanks for all you share.

Ali...you are in the same boat as many many parents.. My husband, JOe and I included.
WE watch our son CHarlie who is very active, very witty, smarty, and others have said that Charlie is too active to the point of hyper. Who are they to say this? How do they know what 'normal' is.. These days ...who is ANYONE to say what the norm is. Everyone doesn't need to fit into the same mold, everyone doesn't go to work 8-5 in an office, everyone doesn't put diet on their resolutions..everyone is different and deals with life in different ways. Everyone is SPECIAL no matter what their situation.
I Bless any parent that gives damn these days! That's where the problem lies. GOOD LUCK..and you are doing a great job as is any parent that busts their butt so their kids can have a good life.

love your use of colors....Char

alright....simon's badge #1. That's great! Hope the donations keep coming in.
Um, I can relate to the normal thing but it isn't with my kid. I grew up with a twin brother and he was mentally challenged(not sure if that even how you correctly term it these days?) There was no denying he was "Challenged". He climb ontop everyone, scream, bite, disrupt life as we knew it. Kids were cruel and made fun of him on a constant basis. Now that he's an adult, he has wonderful programs he is involved in and has a working job and gets paid. He doesn't live by himself but can live a pretty normal life with supervision. I just wish growing up in a small no where town that they had better programs for people with needs. My brother was put on the wayside and never helped very much.
Today there are alot more better programs out there and awareness for many causes. Thanks for being one of them.....and making a difference.

congratulations on all the badge success! i think it is awesome!
and i love your new book...i must find time to create!

It's so exciting Simon's badge is #1! I have posted the link to your site and Simon's badge on yahoo therapy team groups for some of the kids I work with. I am hoping other families and therapists are checking it out.
As a therapist, I often have to remind my families that some stuff there child does is pretty typical and age appropraite, however frustrating it may be. I sometimes think though that parents of children with special needs are better equiped to deal with typical childhood behaviors, because they are often very resourceful and creative in handling situations!
Erin

love the album & your new banner. awesome!!

I'm stop by often, but don't comment very much...today you just really touched my heart. So much of what you say about daily life with Simon hits a chord with me. With my 5 1/2 yo, Jake, it's a daily question as well...is this typical behavior or the ASD speaking...or is it something else all together? Thanks for being so REAL. If we all continue to be real in our mothering and friendships, we are so much more able to support each other and be great moms and friends! Here's to being REAL!

OK, this is off subject for today, but just wanted to say how much i LOVE the photo of Simon on the sand on your banner photo. It tells so much more than a just a boy and sand. Your mother is a great photographer!

Ali,
I want to let you know that I have a daughter who has a mild case of tourette's syndrome. I thought of the ? you asked many times about whether the behavior is from the tourette's or just her personality. First of all, I know the more information I obtained the better informed I felt. Now everyone is going to have an opinion on your situation. Just weed through what you need to and take to heart the other. Honestly, it was just a learning and day by day process for us. I think the best thing that worked for me as far as the more difficult behavior was changing her diet (that was the most incredible transformation) and speaking to her heart as much as I could.

Congratulations on the badge...I will be donating on MOnday and sending the badge to everyone on my mailing list...being on the top of the list--Wow, that is something to embrace..a blog and a cause, a very special cause is a powerful thing and your art makes us all feel so connected to your family. weird but good and true.
i have been UTEEing and embossing and mixing patterened papers since i got home from Get Croppin' this weekend. My house is a mess but i am happily inspired.
thanks, aimee porco

You're right Ali, it's SO hard being a parent... so many worries, and just trying to figure it out as you go along. I have a degree in Early Childhood and you'd think I'd know what to do with my boys (6 and 3) but a lot of the time I don't. I have struggled with depression all of my life, and I fear that my 6-year-old is going to follow in my footsteps (we seem to have so many personality similarities) A big challenge for me has been figuring out what behaviors of his are normal and what could possibly be a warning sign of depression?
It's so great that you are so open about life and the challenges you face. We're all human and we all have our struggles along the way.

Ali -- sometimes what we think is "normal" is really what is "idealized" -- My friend has a son with Asperger's and she was upset because Trick-or-Treating was something he could only handle for a handful of houses, at most. She was lamenting the lack of a "normal" Halloween for him -- one where he runs from house to house, bag brimming with candy. I told her that my daughter, same age and without Asperger's, was only going to a handful of houses as well. That was our "normal", too. I know it's not the same, because maybe my daughter *could* go to more houses and we have a choice that the mom of a son with Asperger's may not, but their reality -- limited Trick-or-Treating -- was the same as ours.
I think you're an awesome mom and well-spoken public advocate for Autism research and education.

Ali,
We are constantly trying to figure out what are the boys' 'normal' things and their autistic behaviors. I think, overtime, you just come to figure out that they are so intermixed, no one can determine just what is what. It seems to be the hardest thing that we have gone through in the past 4 years with Brendan. But, through it all, we have figured out that in the end, it will all be just fine. It has to be.
if you ever need someone to chat with about this, I am always an open ear!
Molly

Ali, I am so touched by your comments and also by everyone else's. My experience and perspective is slightly different. As a pediatrician I have watched first hand the exponential rise in autism diagnoses and shared in the experience of making this diagnosis with so many families. We are making progress. A pediatric colleague and friend of mine, Perri Klass, , has written a book called "Quirky Kids" which I would reccomend to all of you struggling with these questions. Not a silver bullet, but very thoughtful and practical advice for precisely these questions. For what it is worth, my observation is that all things that go into great parenting also work really well for kids with autism. Don't push yourself to figure everything out( easier said than done, as a parent I know), be caring, committed and consistent. From everything I know about you, you already are.

Thanks so much for the Autism book suggestion! We are a family who has really embraced our son's Autism, and just can't imagine him any other way. So, this looks like a perfect book for my husband and I to read. Thanks!

we also talk a lot about what is normal or what is an autistic behavior. and we do have two other children to compare too, but it is still hard. often we come to the conclusion that the behavior - to a degree - is normal, but the further degree that he takes it to makes it an autistic behavior. it can be so confusing! so happy to follow all of simon's progress though!

Hey Ali,
Glad you like the book. When I recommended it to the 2Peas Autism group - I tried to be clear that this wasn't a book about "my child's miraculous recovery". I have met Sue Senator a couple of times and she is an incredible woman. I love her perspective that she has things to learn from Nat... (She often writes articles for Family Fun magazine and one of my favorite articles what about Nat's Bar Mitzvah)