Shutdown, the video

So I thought I'd post a little video. First of all, to see if I can :) secondly, to show people who might be regular readers exactly what we are dealing with here.

This is Sophie, at her Sophiest. The only thing missing is her Thomas video. With autism being a spectrum and all, I know some people deal with tantrums, and meltdowns and over-hyperness... we don't. What we deal with is different, but still hard, and still scary. It's a little girl who is here, but isn't. Or is here for fleeting moments like a shimmering bubble floating in the air, you marvel at its grace and perfection, then POP! It's gone and you can't even be sure if it was as glorious as you remember it or if your mind is playing a trick on you. And she is just that delicate, shatters just as easily.

Little intro. Even the brief exchange you see here is a LOT for Sophie. The moment I turned the IPad on and started to engage with her she began shutting down. The video is about 2 minutes. Few minutes afterward she fully shut down and went into deep sleep standing by my side. I should've tried to capture it but it was an awkward angle and I just shut the iPad down without thinking.

As you will notice once I realize what she's doing I'm not saying too much and not engaging with her too much. If I did, she would shut down even sooner. This behaviour happens at all therapies, assessments, all settings that are one-on-one with even minimal expectation of a "performance" from her. She does not do this when left alone. If anybody has any ideas I'd welcome them. I do think its pretty unique because its not that we don't want to work with her or teach her... It's just next to impossible for us, let alone for an outsider. If I was able to achieve shutdown within 2 minutes, imagine what a therapist would do- she probably wouldn't be able to get her coat off coming in. And yes, we have tried. It doesn't matter what the time, this was about an hour and a half before her usual nap, but she can shut down at 9 in the morning if circumstances call for it.

Oh and by the way, I was not trying to achieve the shutdown. I thought it would be nice to post a little home video of Sophie in her natural habitat so to speak. It is quiet and peaceful, the baby is asleep, Sophie was in a happy, cheeky mood. Only when I started rolling I noticed that it was too much, too much expectation, too much spotlight... Just too much everything.

Open to suggestions.





The folly of assumptions

If I were to be completely honest, I'd say one of my faults is having some strong preconceived notions. In other words, I do a whole lotta assuming. Sometimes (often, I say) I am right, but when I am wrong, I really am wrong. I was reminded of the truth of the saying "assume makes .... " (fill in the blanks), last week at our family vacation at Great Wolf Lodge.

As I mentioned in my last post, the vacation was a belated celebration of Sophie's older sister's 7th birthday. The get-away was mainly planned as a treat for our two older children. Their life was about the babies and about autism for too long. And while they were having a blast I assumed that we would have to keep Sophie busy with snacks and maybe even take turns sitting in the hotel room with her. I assumed Sophie would not find the park too entertaining. After all, she doesn't even like water.


Wait a minute...

Sophie blew us all out of the water, so to speak. She ran for the pool before she was even changed, had to be caught, wrestled into a swimsuit while squirming impatiently, and then was happy as a clam until it was time to get out. Then wasn't so happy :)

She did it all - wading pool, wave pool, lazy river, splash works, hot tub... We found that she still has the infantile swimming instincts and naturally relaxed in the water and did a sort of a doggie paddle. It seems like learning to swim is a very realistic goal for her.

Of course, I relentlessly kept on assuming. I assumed she would find the kiddie arcade too loud and chaotic (I sure did). Well, she loved it. She ran around the perimeter exuding pure joy, delighting in the twirling lights and disjointed beeps and jingles of the video games. While she seemed completely oblivious to her surroundings, all of a sudden she made a very deliberate bee-line for the carousel and insisted on being hoisted up onto the pony. Yes, yes I assumed she wouldn't like it. But I put her up and she grasped onto the golden pole and enjoyed every second of that 3-token ride with her sister by her side.

We had a wonderful vacation. We recharged, reconnected and tried something new (I even tried the tube slides for the first time ever in my 32 years with my big boy).

And I think I will remove "assume" and "can't" from my vocabulary, when talking about Sophie at least.

Funny pic- can you say "family of introverts"? Relaxing in our room in the evening.



The stacking cup incident

We had a meeting with the local chapter of the Autism Treatment Network. It is an initiative funded by Autism Speaks which compiles a database of information for research purposes. It also aims to educate medical professionals working with autistic children about medical issues frequently affecting the autistic population. There are other benefits apparently like access to nurses for advice but that part seemed a bit vague to me -we do have a doctor, several as of now in fact. Anyway, most of the meeting consisted of going through the forms I filled out (a constant in the autism reality I realized) and reiterating Sophie's medical history and regression yet again. However, we do consider autism research to be an important endeavour and were happy to add Sophie's information to the database. With more understanding of the disorder comes more ability to help, hopefully.

An interesting thing happened at the meeting which prompted me to see Sophie in a different light. My husband and I were sitting with Sophie across the table from the two nice ladies conducting the meeting. Sophie was, as Sophie does, attempting to shut down but she was unable to because she fell asleep in the car on the way (even Sophie can't fall asleep twice in a row). Therefore she was sitting rather petulantly on my lap apparently totally disinterested in our conversation. At one point one of the ladies placed a set of stacking cups in front of her. My husband and I instinctively said "oh, she won't play with those". At which point Sophie sat up straight and without acknowledging us proceeded to stack the cups into each other eight times as if she was doing it every day of her life, with her left hand no less! (She had the fingers of her right hand in her mouth). She then removed said sloppy fingers and stacked the cups with the right hand to drive the point home (stacking cups got nothing on me). Then she placed her fingers back in her mouth and slumped back against me again as if nothing relevant took place. The only sound in the room was that of four jaws hitting the floor. Naturally, a set of stacking cups was purchased shortly thereafter.

As I thought about that incident over the next few I realized that Sophie has been making slow but consistent gains for months. Just as her regression was subtle and initially unperceivable so has been her progress. For the record, in the past several weeks Sophie

  • Has been making consistent gains at daily play group, playing more independently and trying new things
  • Been using pictures to express her wants
  • Consistently used the words "go" and "up" in proper context
  • Learned to say an approximation of "bye" and a wave
  • Re-learned how to use a spoon
  • Learning and doing well at walking holding hands
  • Seems to be more present and engaged
  • Plays with her toys all the time (bead roller coaster, other sensory toys)
  • Shows affection and empathy to siblings and friends who are upset.
  • Uses a Thomas game on an iPad and requests it all the time
  • Initiates interactions such as rolling a ball back and forth with her sister on her own request

These are all small things but in my mind symbolize bigger things to come. The main thing is she is able to learn, and learn relatively quickly. A lot of the things on the list she seems to have just "got" without much help. Some of the skills offered a glimpse for me how she needs to be taught. With my other children I either told them what to do, or showed them what to do. Neither of these methods are very effective for Sophie. She needs to be physically taken through the motor action in order to make the connection in her brain. So to teach her how to use a spoon I placed the spoon in her hand, closed her fist around the handle and with my hand over hers went through the motion of spooning apple sauce into her mouth several times. And she learned! I was quite taken aback of how willing and able she is to learn skills, if she is taught the right way. I must remember this.

Over the next several weeks we will work on reinforcing these new skills and planning for some bigger goals- limiting Thomas videos (yikes!) and potty training (double yikes!). However I think with slow, consistent work we will see success. Knowing that Sophie is able to learn, has the capacity to absorb new information, just needs different teaching methods makes me quite optimistic.

Tomorrow we are going on a 2-day stay at Great Wolf Lodge as a belated celebration of my older daughter's seventh birthday and as a "we need and deserve a vacation" get away. We have never done something like this and are quite excited. I am also curious what Sophie will make out of all of it. I will report on our experience when we get back.

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