I recently had our second appointment with Dr. F, at The Autism and Learning Center here in Houston. I tip-toed through the consult with pure confidence and all answers this time.  You can read about my first experience here. Dr F asked specific questions. I had specific answers with specific supporting documentation in hand. I spoke when spoken to and the visit went smoothly. These Specialty Clinic Visits have an invisible itinerary, you can read about that in The Specialty Clinic Visit – 101.

A point came when I realized she was hung up on incomplete labs. I tried to get the necessary draw completed, but as usual Savanna would only give us so much blood.  (A recent blog post, The Blood Draw, describes a typical event these days.) I insisted they review the records as I was confident we had historical results for everything she wanted. She suddenly assigned another assistant to begin reviewing the records for results with labs which could answer her questions and support my assertion.

Onward with clinical observation.

Suddenly Dr F introduced to the two other people in the room that were silent to this point. One person was her new nurse practitioner (NP) that we would be seeing long term. She was as nice as could be with a very warm and inviting persona and it just seemed like someone I could talk to about Savanna at length with ease and without judgement. Then I find out through her own admission she is not only a mom, but has a child with special needs as well.

During the clinical observations period, Savanna responded to verbal instruction once and pointed at something she wanted repeatedly. She didn’t randomly and compulsively dump the toys nor insisted on the doors be closed to the room. (These things still happen at home, but didn’t at this particular time.) It was phenomenal. Dr F. remarked, “I didn’t expect to see this today!”

My words, “I know.”

This time I created the awkward pause. So, I decided to interject some mushy conversation since the fact-finding and presenting part of the visit was clearly over.

Since our last visit, I processed the diagnosis to the extent 2 months would allow. I don’t see this situation as final. I am on a mission to give my daughter the best chance she can have in this world. This is why I am here today, not because you wanted to see her for a follow-up, but because I respect your judgement about what she needs to help her.

Some of the reading material you suggested I have read. My knowledge about my daughter’s condition has increased dramatically over the last 2 months.

Thanks to being labelled with an IDC9 code of 299.00 (ASD), the therapy allowances are suddenly unlimited (for now). (Smiles all around in the room?)

I initiated another speech evaluation (here is your copy by the way…), and increased her therapy three-fold with new goals from the evaluation. While she isn’t receiving ABA therapy yet, we are doing more in that direction versus less. It has made a difference just in these 2 short months. 

I see her problematic behaviors more defined in black and white and this guides me on how best to help her understand the world around her. We have tried diligently to be more effective at therapy, formal and otherwise. I see her improving quickly. But I felt like I could not state that in the beginning, because you didn’t really care what I think.

So I had a moment where I sounded informed, confident; like someone who leads from the front versus the stereotypical paternal figure who is considered by many in the medical professional community to be sub-tier and capable of care slightly beyond babysitting.

The assistant combing through the records confirms records are available that speak to blood work Dr. F. ordered, so no further labs are necessary.

Dr F felt Savanna would benefit greatly from having ABA therapy and was disappointed to hear we couldn’t get into the schedule at the center she recommended until about September. Dr F suggested if we had the means, we should consider an abbreviated ‘slip-shot’ version (as she put it) until we could get full-time placement in a center.

On the ride home this particular day, these thoughts crossed my mind with respect to Savanna’s progress.

A typical child moves through the phases of learning to walk almost regardless of parental input. Our sitting, crawling, and walking gives example but few parents understand the mechanics of these movements. Why would you unless you were a therapist. Normal kids just do these things! We endlessly try to prevent bad falls. But that is about it for the typical family. The determined child will learn how to walk on their own, at their own pace, regardless of the parental input. Perhaps Savanna has experienced some of this type of development as well, and is just doing better all on her own regardless of all my efforts. I like to think I/we have a high level of impact on her development. But this measurement is elusive and will never be known in all honesty. Scientific evidence trends toward better outcomes result from aggressive early intervention, but it is definitely not a guarantee.

On a more fun note…

We recently went to The Houston Livestock Show and Rodeo.  It has been a long time for me, but I actually came to this show with someone I worked for many years ago, with livestock.  I worked the event, and didn’t walk around much. Being there sure brought back a lot of memories of working on the farm. Mommy was in her element for sure. I was most worried about Savanna and the large crowds. I feared she would have a meltdown. Ironically, our six year old was the one who was fraught with fear that we were going to lose someone. He couldn’t have fun until we found the big slide…! Savanna, well she had the time of her life!

 

 

Thanks to the help from Dana and Jennifer at The Speech Emporium, Savanna is breaking through the screaming with words! She can consistently say Mama, Dada, and Uh-oh (when she drops something on the ground)! We are working on ‘go’, animal sounds, and signing. She seems to know the ‘more’ sign but doesn’t do it with consistency. Augmented communication and picture exchange programs on the list to try. This latest spurt of development has been wonderful to witness. I honestly wasn’t sure it would ever happen after what she has been through. Here is a short video demonstrating these skills.

Despite the orthotics, she is tip-toeing to reach things on the counter. She can use her step stools now to assist her in getting what she wants. I have seen her pick it up and deliberately put it near the cabinets so she can use it to access more counter top items. Her ability to explore her world just increased in dramatic fashion.

And Savanna loves to explore her environment. Yes, her activities seem more self-limited to a narrow set of activities or routines not including any imaginative play and little social interaction.

She generally likes opening drawers for the sake of opening them. Sometimes she will even dump whatever resides in the said drawer if she can reach the contents. If she dumps something that gives her a positive ’cause effect’ response. For the longest time, it seemed that is all she would do it dump toys, empty shelves, and help keep the sofa clear of anything.

Today, she opened a drawer, and stood on her tip-toes to look inside!  I have not seen her do that until recently. She looked inside, then at me, and then inside, and then closed the drawer when I asked. It was that look in her eye that really grabbed my attention, “I am looking in this drawer and I know you are watching me Dad…” I see this in typically developing kids, but never have I seen it in Savanna until this experience. Little moments are great.

Recently, I was upset at why the floors suddenly were so dirty in our house. I clean all the time! Something was amiss! I started checking Savanna’s toddler cups for incorrectly installed valves or lids. I was surprised to find she had bitten through the rubber mouth piece on two cups.  Interesting…

 

This past weekend, she managed to crawl out of her crib on her own. Uh-Oh! I have known she could do it for some time now, but she never tried until recently. While a really great development cognitively and physically, it is unsettling as this is a game-changer for sure – as all parents understand.

Savanna loves to climb. She has master maneuvering the steps on the playground and scaring the daylights out of me with her wobbly off-balance gait once at the top of any play structure. She has even decided to climb the chain ladder on the structure just behind our house. It is quite something to watch.

 

She has many teachers when it comes to climbing! Tristan is at the age where his strength to body weight ratio is ideal for scaling all things ‘play structure’ related with amazing ease. And Brandon and Austin are not far behind him in ability.

Recently we tried to conduct a PT session outdoors at a nearby park. The same park we visited many times.

I did have to rush a little through the wake-up process to make it to the park close to on-time. Savanna would have none of it, absolutely zero participation.  Not just that, but her behavior devolved into just screaming and crying, uncontrollably, nearly inconsolably.  She normally loves this park?

But she was finally in full meltdown mode, for all to witness, and I couldn’t stop it.

What was different?

Perhaps the abbreviated transition from nap time? Difficult to say at this time.

She eventually calmed down and we did a couple of things for about 5 minutes, but she was on edge.

This was my reminder to be Aware of the Autism.