F is for Friendship and Fun

We've had an amazing couple of weeks since I last posted. We sailed through the IEP process and came out on the other side with everything we wanted! And we also came out exhausted! :) My husband always says this journey is a marathon not a sprint, and I think I've been sprinting towards the IEP since the diagnosis and now I need to set the proper "marathon" pace.

Squish celebrated his third birthday with close friends and family. He did a great job staying around the group, sitting to eat his chicken hot dog and blowing out his birthday candles (although he declined the cake with a "NO" and opted instead for vanilla ice cream). He even opened two presents which shocked me since he had no interest in them at Christmas. Best of all, he laughed a lot and smiled a lot, and looked like a very, very happy little boy.

He's also found his silly side. Lots of giggles and lots of belly laughs. These are things I've missed over the past year. I don't know where they went (they were there when he was a baby) but I'm glad they are back. I cherish those belly laughs.

So here's the part of the post where I ask for advice from you wise mommys (if you are even checking up on this blog as I post so infrequently...argh...working on that)...how do you handle dropping "the big A bomb" as my husband calls it on friends? Not close friends, mind you, but the friends you see a couple of times a year? We ran into a couple we hadn't seen in over a year this weekend at a mutual friend's birthday party and had a wonderful chat about their new baby. They were asking us a lot of questions as they are first-time parents and they had mentioned how they were so tired of people questioning when their daughter was going to crawl (she is eight months old). They said they had thrown away the "what to expect" book and were playing it by ear. I empathized with the often well-meaning but totally annoying "milestone" questions hucked at you by family, friends, strangers. I told them that I, too, threw away the book and haven't looked back. That I trust my mommy gut (or as a friend calls it "Jungle Mama") and work from there. I then mentioned that Squish was diagnosed with Autism and that we get a lot, and I mean A LOT of intrusive questions from strangers and the like about when he'll "talk more" etc. Their faces both kind of went blank and one of them stammered out "well, that (autism) can mean a lot of things" and her partner just kind of looked on the verge of tears. I quickly said "he's doing great. He's in all kinds of wonderful therapy and he's making great leaps. He's awesome." And then we just kind of stood there awkwardly. And then the Hubs and I moved on to another couple.

On the way home, the Hubs and I talked about dropping the "A bomb" and how far we've come in understanding Squish's condition and how hopeful we are for his progress and his future happiness as a beautiful, smart, eccentric part of society. Then we talked about the fact that to someone who isn't as knowledgeable, Autism sounds off all kinds of bells and whistles and images that are probably pretty scary to new parents who are concerned about their child's development.

And then I felt like crap. I wasn't comparing their child to Squish. I wasn't even saying she was delayed. I was just empathizing. I feel like just as I'm getting comfortable with saying "Squish has Autism" I'm realizing that nobody is really that comfortable with hearing it.

Would love the wise-mama thoughts. :)

md

E is for Everything

A few weeks ago at Church our Pastor gave a sermon on Rejoicing. And challenged us to rejoice in everything. EVERYTHING. Seemed simple enough. Even with our challenges we are grateful and feel truly blessed. This past week though...well, let's just say rejoicing wasn't the first action that came to mind.

This past week our entire home was struck down by the flu. By Tuesday AM we had been to the doctor, we were humidifying fools, we were taking multiple baths to get fevers down, we were throwing up food. And by we I mean EVERYONE IN THE HOUSEHOLD. Tuesday morning also included a somewhat tense meeting with our ABA provider at which they put the full court press on me to keep Squish out of preschool. The really amazing ABA-based, specially for kids on the spectrum, REALLY HARD TO GET INTO preschool. 'Cause, "All the RESEARCH says 40 hours of ABA is what is most effective." Except, I don't think Squish is going to thrive at 40 hours (A WORK WEEK for a 3 year old?!?!?!) *and* I KNOW he needs more social interaction with peers. Something no amount of canned, 1:1 "peer dates" w/ABA tutors is going to really, consistently provide.

By Tuesday afternoon I had gotten a call that my Mom (the same one who is struggling with mental illness and substance abuse) had suffered a stroke.

By Tuesday night I had been convinced not to go to see my Mom (guess the Doctor frowned on her flu-ridden daughter visiting), had rescheduled Squish's IEP for next week, had thrown up a few more times, and had cried like, oh, I don't know, BUCKETS of tears.

Flash-forward to today and we are all doing better. I was able to see my Mom yesterday and it looks like she will make a full recovery. We're all healthier here (not perfectly healthy but close enough) and most of today was spent out back on the kid's swingset in the sunshine.

The Hubs and I are still grappling with the decision we made in regards to Squish. I do believe that a combo of preschool and ABA is what he needs, even though the research supports a 40 hour ABA week. Which is weird for me because I'm usually ALL about the research. But I do think you can come to a point in your journey where your own research (which for us includes observing Squish with peers, talking with numerous parents who are futher down the path than us, and consulting with other therapists) trumps that done by folks in a clinic who don't even know Squish.

So back to rejoicing. I finally sat down and willed myself to rejoice in all that has happened this week. True, our Pastor challenged us to rejoice in the moment, but sometimes I come late to the party. :)

I consciously rejoice in the fact that my Mother is going to recover AND in the fact that she had a stroke. Why? Because we are praying that it is the rock-bottom she needed to hit to realize her mortality and to take better care of herself.

I rejoice in the flu! Why? Because although we were sick, vomiting, feverish fools, all four of us were together with nowhere to go, nothing to do, and nothing expected of us. We piled into the big bed and drank tea and juice and water and ate whatever we could keep down and watched a lot of movies. And napped. And read books.

I choose to rejoice about the pressure our ABA folks are putting on us. They forced us to rethink our choices (again) and because of it, we are even MORE certain we are doing the right thing.

Finally, I rejoice in this moment. When my precious babies are asleep, the Hubs is doing the dinner dishes, and I get to read some favorite blogs while sitting on the couch and sipping some red wine.

In EVERYTHING rejoice. Not always easy to do, but always so uplifting when done.

-md

---