What have you done today to make you feel PROUD?

You guys.

Mini is amazing.

In case you don't have time to read the whole recap of last Tuesday's appointment, I will tell you my takeaways first off:

1) Mini is absolutely 180 degrees from his February self.  He is so happy so well adjusted, so well behaved, so easy to transition, so open to new people.  I just stared at him, jaw on the floor, most of the day because he was so amazing.

2) You all are right.  For the second time this year, I can say out loud that I'm a good mom.  That is my Christmas gift to me.

This is the song I want to play over and over.  Because on Tuesday, Mini and D and I did about a million things that made us feel proud.  But mostly Mini.  So, so proud.

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If you are able to spare the extra time, here is the unabridged version of Tuesday.  D was able to come with us this time, and I think that was the reason I wasn't nearly as anxious as I was back in February when we went to Kennedy Krieger.  I thought I'd have tears brimming all morning, but actually, everything was ok.  Mini went to Behavior Therapy like usual, D thought it would be good for him to get in the right mindset, but they knew he'd have a big day so they took it easy on him.  When we got there to pick him up, he and his friends were in circle time singing "If You're Happy and You Know It, Clap Your Hands."  God I love that place.

We drove there in terrible traffic but because the Hubs was driving, we still made it in time (thank you, former motorcycle racer).  The waiting room was crazy busy.  Their appointments all start at the same time so there were a zillion kids and a zillion parents and the waiting room was sterile and hospital-esque.  We told Mini he was going to play with a new friend, Miss Debbie, and he said he didn't want to.  I thought "I hear you buddy, I don't really want to meet her either."  We set him up with a few treats and some juice, to get him into a happy place; in ABA Therapy, this is called an "Anticedent Manipulator."  When Miss Debbie came out to get us, he said hi even though he said he didn't want to meet her.  We told him we were coming with him and he just grabbed Ds' hand and we set off.  Easy peasy.

But that was only the beginning!  

Miss Debbie administered the CELF-P and the ADOS.  The CELF is a language evaluation and the ADOS is an autism evaluation.  After about 15 minutes of chatting, she told us she'd prefer to have us out of the room for the CELF, but that one of us could be there for the ADOS.  I said, sheepishly "He doesn't really separate well...." and she encouraged us to give it a shot.  She said he'd be with her for about two and a half hours.  Then he would go to a nurse to check height, weight, vital signs.  Then some time with Dr. Yelin to check him out some more.  All told, we'd be there for about 4 and a half hours.  Marathon.  And he's 4 and a half.  Knowing that Plan A always has a Plan B and C, I thought "Eh, we'll see how far we get."

I'll bullet point our successes because it's easier to read a list.

• Mini separated from us 10 minutes after meeting Miss Debbie.  When we started speech therapy in February, it took him 5 weeks to sit in her room without me.  Then another 5 to actually leave the waiting area without me.  So, 10 minutes is huge.  Huge huge huge.
• All told, he was working with Miss Debbie for three hours.  A four and a half year old!  Most college students I know can't sit through a three hour class without getting restless!  Back in February, he sat with the doctor for about 20 minutes.  In other evaluations back in the day, he sat for about 15-20 minutes as well before completely shutting down, ceasing to answer questions and refusing to engage at all.  Three hours?  Shocked.  Progress indeed!
• At the end of the three hours with her, he had found a *favorite* toy and was playing with it, jumping and dancing and running around and laughing and loving life.  When we told him he had to leave it and walk down the hall, I thought "ooooooh this isn't going to go well."  You may recall the kicking, screaming, throwing blocks at people, biting when he hasn't been ready to relinquish a toy in the past.  We said to put the toy down because it was time to go.  He put it on the table and we left.  Boom.  PROGRESS AGAIN!
• Again, back in February, the nurses who were supposed to take his vitals gave up.  He was spitting at them and kicking them, and crying as though they were trying to rip his arm off.  He tried to run out of the room, threw himself on the floor...  It was terrible.  Last Tuesday, he had another visit with a nurse.  Smooth sailing.  Weight, height, blood pressure.  Even the blood pressure cuff!  He did it!
• Dr. Yelin's office was dull and boring.  And she didn't really know how to interact with him.  Both of those things were shocking to me, since she is a Developmental Pediatrician specializing in Autism Spectrum Disorders. (And that was only the beginning of my disappointment with her but more on that in a sec.)  Again Mini was the Golden Boy.  Found things to occupy himself, was well behaved, good natured, and patient.  Huge accomplishment for him given that we'd been asking him to be well-behaved and patient for four hours by the time we got to her office.  

And now, a bullet list of results:

• His language eval placed him in the 10th percentile for his age group in language use.  "10th percentile!?" I said.  "That is better than I expected!  On the charts is good!"  He is still diagnosed with a "severe" Mixed Expressive and Receptive Language Disorder.  I expected that would not change.  His language ability is at the level of a typical 3 year old.  But!  6 months ago he was diagnosed at 2-2.5.  So again, progress.
• He was diagnosed with "Mild to Moderate Autistic Disorder."  But I know it's mild.  I asked for clarification on the "moderate" part, and she told me some of the things she felt were a bit more moderate issues verses mild issues.  However, when I told his behavior therapists, separately, about the diagnosis the next day, both of them said definitively: "MILD."  Not moderate.  I know this.  I'm sure it will be changed by the docs at future appointments.
• The other thing I loved walking away with last Tuesday was this:  I REALLY know a lot about this.  No one I met on Tuesday told me anything I wasn't expecting or didn't already know.  I've spent the last nine months putting so much pressure on myself, never feeling like I am doing enough, never feeling like I know what I'm doing.  But on Tuesday, all the acronyms they used, all the symptoms they discussed, all the goals, all the school district services and support, all the therapies they mentioned, I knew.  I had intelligent conversations with everyone there, because I Get It.  I don't congratulate myself very often.  What mom does, truly?  But last Tuesday, I patted myself on the back.  It paid off.  I could talk to those folks like an equal.  Not like a scared new mommy.  Because I've busted my BOOTY for the last nine months and I learned.  HUGE feeling.
• Both D and I were extremely disappointed in the doctor.  When she told us his diagnosis, she handed us an article about Autism that she printed from ABOUT.COM.  Um, what?  Are you one of the leading doctors on Autism at Johns Hopkins University and you just gave me something from About.com?  D said "Oh we don't need that.  We can find that ourselves."  and I said "He was diagnosed 9 months ago.  We know all that already."  She also tried to give me the little pamphlet the have in the pediatrician's office about Autism.  Again I said "No thanks.  I don't need an Autism Primer anymore, thank goodness."  She was hardly able to communicate with him.  She struggled about as much to communicate with us.  I kept pushing her for more specifics "Exactly what symptoms do you think indicate moderate verses mild autism?  Exactly what support do you think he'll need in school?  Exactly what do you think his potential is over the next six months?"  She didn't answer anything to my liking.  When he goes for a follow up, we will not see her again.
• The speech therapist told us that she has high hopes for our Guy.  She said he is enormously social and has a strong interest in engaging with the world a lot of the time.  That is something you can't teach an autistic child.  You can teach them that when a person cries, that means they are sad.  You can teach them that when you meet a new person, you say hi.  But you can't teach them the desire to make a crying person feel better, and you can't teach them an interest in knowing a new person.  Mini has those interests.  The fact that he has an innate drive to interact with the world is a HUGE thing that will enable him to learn faster and get further in his world.  I am so grateful for his sweet, social nature.

Well that's all I can think of now.  It's important for me to chronicle these big events in case I ever need to draw on them later.  So, if you're still reading, thank you for your passionate interest in Mini and our family.  Last week felt like such an important milestone, and our family made that day a good one because of the months of support and love and patience we have received from people like You.  Yes, You, friend.  Thank you for sticking with us.

Love love,

Renee