Could y'all weigh in on how many of you have both parents working?  I ask because that's our situation.  We can't afford to have one of us stay home.  

During the previous visit to see Dr. Bryna Siegel, 30-year autism expert extraordinaire, I broke down in tears.

That was 1.5 years ago, when the kids were almost 3. She told me in no uncertain terms that my son's moderate level autism meant that he, like 90% of kids at his level, would never be independent. I asked if he would ever marry. She firmly said, "No".

From that experience, we came to a couple of conclusions. 1) We will prepare for the worst case scenario while pushing our kids to reach the best potential possible whatever that may be, living day-by-day, and not hoping for a specific end result. 2) The goal would be happiness for the kids on THEIR terms, not ours. Dr. Siegel indicated that even high-functioning people with autism often aren't interested in romantic relationships. Fine.

Dr. Siegel is very smart, but she doesn't pull punches, and the experience, while valuable, was like being hit with a brick.

So, with that in mind, we took the kids for their updated evaluation with Siegel on September 23rd. I brought my aunt, Susan Nathanson. Susan is a former speech pathologist who denied for a long time that the twins had developmental disabilities at all, because when she had worked with people with the diagnosis, it was at the time when only the more severe cases were being diagnosed.

I asked Susan to attend for two reasons: One, with my mother (Susan's sister) passed on, Susan is the closest thing to a maternal figure I have, and I knew I would need her emotional support. Two, although Susan had already come around to accepting the kids' diagnoses by this time, I still felt she (and we) would benefit by having her on hand to listen to the information directly from the expert, and to hear that person's point of view.  read more »

My family and friends often comment about how lucky our children are to have us.  OK.  I certainly won't turn down the acclimation and the support.  God knows we need it.  And yeah, I know there are worse parents out there.

Yet, I can't help but wish I felt this public image was more of my daily reality. 

 Because the times when I feel like a competent parent doing everything I can - Those times feel like the minority. 

Most of the time, I am exhausted, emotionally and physically.  I look at my son, stimming, in his own world.  I know I should be doing what I can to provide structure, interaction - Help to pull him more into an interactive and learning world. 

But it seems too much, too hard, especially when those periodic negative surprises come up to hit you in the face.  I become paralyzed - In a funk.  I rely too much on the television.  Or I simply leave the kids to their own devices, at a loss of what to do or say to help, only intervening during behavioral problems, or to implement the usual scheduled routine. 

And then the guilt - From technically knowing somewhat what I should do - but not having the fortitude / strength to make it happen for my child, causes the paralysis to get worse.

Vicious circle.  Gotta take care of myself, so I can take better care of the kids.  Give them what they need.

Fortunately, the periodic positive surprises help.  And support helps too.  And I do a good job, sometimes.  Not as much as I'd like, as they'd like, or as I need to do.    

Y'know, sometimes in the midst of my chidren screaming, resisting doing stuff, and just plain, misbehaving, my wife and I wax philosophical about how their misbehavior may actually be consistent with that of typical children their age. And isn't that a relief? Don't we feel so much better knowing that our kids may be acting like typical children? Yes. Yes, we do.

Then the kids actually find ways to increase the volume.

And why yes, that DOES feel like a migraine coming on.

And yes, yelling at them - ineffective as it may be - suddenly seems like it might make ME feel a bit better, if only temporarily.

I haven't. Well.... yet.

And I have to also remind myself - If this IS typical misbehavior, then we - as parents of kids with special needs - have one advantage that parents of typical kids don't have.

Respite.

And then I laugh.... Maniacally.

Kids, I love you.

OK, time to jump in hot water.  My wife thinks I'm just asking to be flamed for posting this on this site, but, I'd like to honestly discuss this with my parenting peers.  So, here goes.

 I'm looking at this controversy from a couple of perspectives.  First, I'm a parent of twin children, both of who are on the Autism Spectrum.  Also, traditional research (though now somewhat challenged) suggests that children such as my son with moderate or higher levels of autism also display at least some degree of mental retardation.  This has not been confirmed for my children as yet, but may be in later years.  Both kids are almost certainly going to be grappling with social issues.  Having felt much like a social untouchable from my elementary through high school years, I worry quite a bit about this.  My difficult peer situation growing up had a pretty extensive impact on my personality.  Some good, but some stuff I still struggle with.  (I'm 38 - Not the best at letting go.)  I'm also Jewish, and in spite of never been deliberately attacked for my religion, I probably wouldn't have much humor about being called a number of specific names related to that.  Even without attacks for my religion, I was called a number of non-group names as a child which definitely hurt at the time.   read more »

In preparation for my kids' kindgergarten IEP plan in December, we've begun the latest rounds of new assessments / follow-up.  We had a new assessment at Santa Teresa Kaiser and we're having our follow-up with Dr. Bryna Siegel at UCSF at end of September. 

 Santa Teresa was nice.  The practitioners had more pleasant and relaxing bedside manner for one thing.  They encouraged my wife and I to relax when addressing our children's needs and not be as wound up about providing them structure 24/7.  They encouraged us to remember to have fun with them as well as teaching. 

They confirmed my son's autism - not a surprise there.  They revised my daughter's PDD-NOS diagnosis to Aspergers.  We were a little surprised, but not hugely, and not to the extent that we were upset.  What I didn't know is, apparently, it is hard to diagnose Aspergers until kids are a little older and so specific developmental milestones can be examined..  The twins are 4 and a half years old now. 

We also know that diagnoses tend to vary between practitioners and also over the years and things change. 

 So - shrug - latest thing to learn more about....     

This is only my second blog, though I've made some comments.  Hard to believe July is almost over, and we've had different family members visit us from out-of-state every other weekend.  But looking back, I'd have to say the most memorable day for me will be the 8th. 

 We took the kids to their 2nd dental appointment and their first full cleaning.  The first appointment was to acclimate them to the office, introduce them to the doctor and get their teeth counted.  Piece o' cake, but this new appointment was the one that had worried us, and the one that we'd been putting off for far too long.

Nora's teeth were fine, but David had a pretty impressive tartar build-up.  The office was focused on kids with special needs and they had a good set-up.  If your kid needed it, they could provide a local sedative or nitrous oxide to calm the child down.  If that didn't work, it's off to the hospital for general anesthesia and the work is done while the kid is unconscious.  We imagined that David would need to do the hospital.  But the first visit, the doctor told me that she thought David wouldn't even need a local.  She said, at worse, they'd have to "papoose" him, an idea which my father didn't like, but which I understood could make the child more comfortable.   read more »

One of the things that that I need to improve is planning for holidays and weekends.  We've got something going with friends on Saturday and Sunday.  Tomorrow is another matter.  My wife would just as soon stay off the roads due to expected traffic on the 4th.  We often take the kids with us on shopping trips / chores on the weekends, but we expect many things will be closed or too crowded tomorrow.  Last year, we took the children to their first Independence Day Parade.  The event lasted much longer than I anticipated, and by the end of it, the kids would have been climbing walls, if there had been any out there.  Fortunately, it wasn't too far from home.  We may go briefly by the parade tomorrow to see if we can find one of the paraprofessionals who my daughter loves (and has been obsessing over lately).  Other than that, no play dates planned, because we imagine that everybody is actually going to be doing their own thing. 

The goal is simple, well, not always so simple.  Do something constructive and fun, and don't fall back on the TV.  We'll see what else is going on locally.  Nothing too crowded, which could potentially freak my son out. 

The kids go to bed at 8 p.m. still.  They're 4 and 1/2 years old.  I'll probably try to take my daughter to fireworks next year, but not this one, since we're getting up early in the morning.  Depending on how my son is doing with crowds / change by then, I may bring him as well.  (Never know how much progression will be made a year from now.)