Each day and each experience when living with a child with autism is different.  Each child with autism is different.

For those who don’t know what autism is:

Autism is a developmental disability, which is defined as a syndrome. A syndrome is simply a mix of signs or characteristics that can be used to show a particular condition. Autism is a lifelong condition that combine both developmental and behavioural features.

Translation: Autism is a series of developmental issues in socialization and communication that affect each person differently.

I know it has been a while since I have posted one of these.  Especially for those of us with a kid with autism, sometimes life has a way of getting away from you whether you want it to or not.  

Summer has brought with it a whole new series of challenges for us.  There is no school, so L’s routine is completely disrupted, disoriented, and out of sorts.  This summer has been no exception, and brought about all of the day to day challenges we face in spades.  But there have been some triumphs, too.  Every day is a new adventure.

We FINALLY(!!!!!) potty trained!  She finally got it.  And most nights, she doesn’t even wet the bed.  This was critical because the end of last school year brought about the revelation that in addition to her autism, ADHD and seizures and other health problems, L has an IQ of 151.  This classes her as profoundly gifted.  And her school has never had a profoundly gifted autistic child before.  They have never had a child entering kindergarten who needed both gifted enrichment and special education services at the same time.  

L still struggles with her social skills (she doesn’t have any).  She struggles with change and routine and structure.  And as she makes the transition from pre-K to kindergarten, she struggles with her emotions.  But she is so highly intelligent that it makes her journey more complicated.  It’s why to the outside world she looks so “normal” even though she is not considered high functioning because of the degree of dysfunction caused by her autism features.  So if we wanted her to be able to be in a regular education kindergarten class, she had to be potty trained.  And everyone, the school included, thought the special education classroom was not the best place for her because academically she was functioning at a first grade level in pre-K.  So we set to work.

Do you know what did the trick?  Superhero underwear.  I actually found girls underwear with superheros.  Batgirl, Supergirl and Wonder Woman.  They aren’t the same as the boys’ Avengers underwear she wanted, but they’ll do, she tells me.  And we do fairly well most days.

Then, we took a family trip this summer.  As my grandmother is getting older and things happen, I worried that we would start running out of chances for my kids to spend time with her and my grandfather.  There is so much that they can learn from them about so many different things, just by spending time with them.  So we all loaded up, all five of us, in a rental car and drove what was supposed to be 7 hours so the kids could spend some time with Nanny and Papa.  Well, all 6 of us, my brother went with us, too.  The drive was definitely an adventure, but the trip was so worth it.  I just wish it could have been longer.

I was the most worried about L and the road trip.  Seven plus hours in a car twice in one week, how is she going to do with that?  She did surprisingly well.  Her uncle let her use his hotspot part of the time so she could watch her Youtube videos, and we had ways to charge her iPad.  I had several power banks with my so that everyone could have their devices charged up.  And one night on the way back to our hotel after going for ice cream, all of a sudden I hear L tell her older sister, “no, no, no.  The nucleic acids go on the outside of the germ.”  And then I had to explain to my 12 and 10 year old what nucleic acids were.  And how their 5 year old sister knew that and they didn’t.

And now, we are winding down and getting ready to go back to school.  Last week, L managed to crack the screen on her iPad when she tripped.  So a replacement screen will be in Friday and my dad said he would be able to change it.  And Kindergarten will bring new adventures and new challenges and new joys and triumphs.  Right now, L is OBSESSED with all things planetary.  She knows everything there is to know about the solar system and the dwarf planets.  Pluto is her favorite.  When I created her an email address and told her it was plutofan she said to me very pointedly “That’s the dwarf planet that used to be the 9th planet that has a lot of ice, not Mickey Mouse’s dog, right?” 

So that’s our summer so far.  What kind of adventures are you all having?  Did you take any trips?  Have any tips on taking road trips with autistic kids?  We have another trip planned for December.  I would love to hear your thoughts!

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