Why that name

Just a quick note - I chose this title for my blog because if any of you have tried to actually go up the down escalator it is a lot of work. When my son Simon was born, I was figuratively transported to the basement. I was struggling to find out what this meant for our family, and our future. I began a journey on that day, to go up the down escalator. I know it will always be a lot of work to keep going up, but that is what I have to do now to stay out of the basement. Simon has Down Syndrome, but I am choosing every day to make life normal for him and to help us get back to the ground floor. Anytime I forget the joy and stop moving forward, I find myself rapidly descending into the basement again. Thankfully I also have an emergency stop button. He is my Creator and my Father. The One who brings the despair to a standstill when I call on Him. He is my Rock and Refuge. The One I can run to when no one else understands. It may sound cliche, but it's true, I couldn't do any of this without God. He is the reason that some days I can still smile when things are ridiculous inside. That is why the name.

Saturday, October 20, 2012

Five months!

Okay, so really, I need to get into the habit of doing this on a more regular basis.  Five months is far too long to go without updating you on our adventures.  When I look back at my previous two posts, I think about where we are now in comparison.  I can't even find something to compare it to our progress is so great.

Last time Simon was just starting to drink from a cup.  As far as drinking and eating goes, we are sadly in almost the same place.  He has his good days and his bad.  He likes to drink water right before bed.  (He has already learned that if he signs for water, it will get him out of his bedroom again.)  Some days I am amazed that he can survive on cheerios, raisins, chocolate milk and peanut butter.  Granted, those are the four food groups, but lets get some variety in there!  Then there are days when he gobbles up meat and some veggies.  Those days I feel like I am feeding my son what he needs. 

In other areas we have made several leaps and bounds.  His signing vocabulary is increasing exponentially.  He now has over 120 signs that he uses both to copy me, and independently.  There are however a few problems with this.  There are multiple signs that he uses that look exactly the same.  They aren't supposed to, but the way he does it, hot and handsome look identical.  Yes, I know they can both be used to describe some people, but I'm talking hot as in temperature.  The other morning, after Elizabeth got on the bus, I asked Simon what we should do.  He signed "dog".  This made perfect sense because that is what we had done the evening before.  We had taken the dog for a walk as a family, and he wanted to do the same thing.  He is getting so smart!  His favorite signs are cheerios, bed, shoes and milk.  I can tell that his hearing isn't as good as it should be, because when I tell him it's time to go to school, he will sign "cold".  Maybe he is alluding to the cold sterile environment with the tile floors and fluorescent lighting......I think he just can't hear it properly.

He really does love school.  He has an integration worker, who also happens to be our respite worker.  He has my cousin as the preschool assistant.  My cousin had a younger sister with Down Syndrome, and has work experience with adults with Down Syndrome.  His preschool teacher is also involved with another child with Down Syndrome, and she is doing signing with her.  It's my dream team.  I can't wait to see what he will be doing at the end of this year.

He is walking around everywhere!  There is no stopping him now.  Any open door is an opportunity for adventure.  Whether we opened it or not.  I am not looking forward to the time that he discovers the motion doors at the mall.  I am seriously beginning to rethink my stance on the leash idea. He is again working hard on what his therapists are wanting him to do next.  This is what we want him to do next.  So he does it.  What do we do for the other two weeks until the next appointment?  Walking backwards?  Done.  Crawling?  Done.  Jumping?  We'll work on that one. 

Intellectually he is moving right along.  A month ago he could barely get one piece of a puzzle in with help.  Last week he did four out of eight pieces without help.  He finds a sticky note on the floor, walks to the garbage, opens the door and then the lid, puts it in, closes the lid, and closes the door.  Oh dear!  Where did I leave my watch?! 

He loves our dog.  Elizabeth used to be terrified of dogs.  Who am I kidding?  She is still scared of them most of the time.  When we bring Prince into the house, Simon will pull on his leash to get him to move.  Poor dog.  Maybe the choke collar isn't a good idea.  If he gets knocked down, he will just stand up and keep trucking after the dog, signing dog and saying, "woof".

Talking is another thing that we are working on.  He is almost at that stage where it is really fun to make him repeat words.  I remember getting little kids to say refrigerator, or hippopotamus.  The way that Simon says Elizabeth's name is either a "Dee"  or a "Eh" with a shake of his head.  He will say mom and dad, and today it sounded like he said, "milk". 

I had a million and one things in my head as I was washing the dishes that I was going to tell you about, and of course, now they are nowhere to be found.  Maybe getting a few extra hours of sleep in a night will help this memory loss.  On that note, I should hit the hay.  Thanks so much for keeping up with us, and I apologize again for my random postings.  I aim to be more consistent.

Thanks again,
Sara