I read Liz's account of her recent journey through the Developmental Diagnosis process with Little Man.  I feel like I could have written it.  She is where I was at about 5 years ago.  My son, Evan is 9 years old and was "officially diagnosed" with an Autism Spectrum Disorder (either Asperger's or PDD-NOS) at the start of Kindergarten.

Of course, we always knew he was "wired differently" from day one.  He had some sort of swallowing issue to where he could not nurse or drink without a great deal of discomfort.  Feeding time consisted of me giving him a few sips of milk/formula, his getting upset, me sticking my pinky in his mouth for him to suck on and to calm down (he wouldn't take a paci) and repeat until he had had enough.

Then, when it came time to start eating solid food, he couldn't swallow so we had in "feeding therapy" for 2 years.  The first day he ate a cheeseburger was the happiest day of my life!

His speech skills were also delayed so we did the speech therapy bit.  And of course, there was social skills therapy.  I was working full time and wound up taking FMLA to accomodate all of his therapy appointments.  Fortunately, too, I had outstanding insurance at the time.

To this day, I feel a bit of a twinge whenever someone refers to Evan as "autistic".  I get defensive and want to say "he's just wired differently... there's nothing wrong with him."  And, frankly, I truly believe that.  We have never really discussed his diagnosis with Evan.  I intentionally did not want him to know that he had that label "hung" on him because, frankly, I never wanted him to use it as an excuse.

A couple of nights ago, though, I was tucking him in and he had had a rough day with his after school buddy who is only five years old.  I tried to tell him that all friends have rough patches and frankly, his friend was so much younger that he didn't necessarily have the same social skills as Evan or my older son.  All of a sudden, he starts to tear up and said "I have a hard time making friends because I have Humperger's ".  Shocked, I said "What?"  "I have Humpberger's".  I said "You mean, Asperger's?"  He said "yeah".  So I asked who told him that.  He said his brother had told him.

So the 1000-pound elephant was in the room.  It was time to give Evan the facts of life:

1. Yes, he had Asperger's.  However, that didn't mean there was anything wrong with him.
2. Everyone has their own oddities and peculiarities and they do just fine.  I told him that his uncle, his dad and I all probably had certain aspects of Asperger's
3. I also told him that just because he was diagnosed with Asperger's, he was capable of doing EVERY SINGLE THING any other person is capable of.  He may have to use different approaches but by golly, we expect exactly the same thing of him that we would expect of any other child.

In other words, Evan doesn't get to act like a jerk just because he is "special needs".  Evan still is expected to do the same work and have the same responsibilities even though he has asperger's.  Evan deserves to be treated with the same dignity and respect that every other kid deserves.

The thing is, as hard as it is to think "my child isn't 'normal'", here's the real truth about Asperger's for us:

1. Evan is incredibly bright and talented in unique ways that would otherwise be unfathomable.
2. I truly believe that Evan's "struggles" since birth has made him a stronger and more resilient boy.  That will serve him well his entire life.
3. Evan is the sweetest most affectionate and loving little boy I know.  In a way, he is able to hang onto that innocence and sweetness much longer than "normal" kids.  While other kids his age are rolling their eyes at their parents saying "dad, you suck!", Evan is still giving me hugs and kisses and constantly telling me he loves me.
4. We have a gift that means we never take every step forward with Evan (or our other son) for granted.  Where some parents might not pay attention to seeing their kids play together, we watch with wonder, awe, and joy.  And we are constantly reminded of others capacity for acceptance in the way they draw Evan into their fold and we watch him grow.
5. Because of Evan's diagnosis, we have a "village" of teachers who we think of as family because they have been with Evan for the last 3 years.  They have kept an eye on our older son to make sure he is ok.  They call us to share good news (like when Evan passed his reading assessment after working so hard).  We even celebrate each family's milestones (like the birth of one teacher's daughter).  This team of people mean more to me than you can ever know...

Evan is now 9 years old.  He still struggles with some things but really... I think that is just because he is Evan and not from Asperger's.  Despite being a string bean (he is 9 years old, nearly 5 feet tall; yet still has not hit the magic "80 pound mark" needed to ditch the booster seat), instead of worrying about his not being able to eat, we wonder how we will afford to feed him as he wolfs down 2 Quarter Pounders with Cheese in a single sitting!  He has a little posse of friends that he hangs out with.  In short, he does just about everything that his "normal" brother can do.

And frankly, while we do worry about him (he is the baby after all), we also know that he will be just fine.  As I said, he may have to learn how to do things a little differently, but he has demonstrated that with the right support and attitude, he will accomplish EVERYTHING he wants to.

To other Liz and other moms who are starting to come to terms with a diagnosis, I certainly understand the shock and pain that comes with knowing exactly what all is going on with your child. 

However, once the shock of the labels wears off, realize that Asperger's or any other developmental idiology is just a way to categorize certain personality types.  It serves more of a "social purpose" because it allows people to grasp and accept personality differences where they might otherwise just chalk it up to "that kid is wierd".

Other things that helped me e to come to terms with Evan's unique personality is the following:

1. FUCK the labels.  Evan is who he is and I wouldn't have him any other way.
2. That said, USE the labels to your advantage to get the social services and the support that your child needs.
3. Do NOT EXPECT ANY LESS of your child than you did before.  You and your child may have to work a little harder to achieve your collective goals; but it will happen.
4. Do not allow your child to use their diagnosis as an excuse for not doing what they need to do.  Like all kids, Evan often will only work on what he is interested in.  However, he needs to put up with the same level of work and learning outcomes as every other kid in that school. 
5. Your child isn't going to grow up wishing they were "normal" because to them, they are "normal".  They don't know any other way of being.  

This last item is the most important thing and thing that I will preserve until my dying day.  To paraphrase Popeye:  We are who we are... and I wouldn't wish for anything else for Evan!

Good luck, Liz and fellow mommies out there!