Friday, October 30, 2015

More Important Than Punctuality

Our days are full of appointments and schedules, it's just the way it goes when your child needs extra support.  Many days I feel like we spend our family time together rushing to get out the door on time, in some sort of office, or rushing to get things done before bedtime.  And in our life, even preparation and routine doesn't guarantee being able to leave on time.


The mornings are especially crazy.  None of us are morning people and while our tasks are fairly routine, there is always something slowing us down.  Sometimes I had a bad night and am slower than usual in the morning.  Sometimes Nicholas has an attitude and is not cooperative.  Sometimes my wife has a bad night and she can't be as quick as she usually is.  Sometimes we have a combination of things.  Sometimes the shoe laces are knotted and take longer to get shoes on.  Once everything is finally done Nicholas and I fly out the door and power walk out the complex to his ride.  Sometimes we get there first, sometimes the ride is waiting.

Sunday, October 25, 2015

Dear Niece: Baby Advice, Because I Haven't Given You Mine



Dear Niece,

Now that you are reaching the end of the waiting part of your parenting journey you have probably began receiving all sorts of parenting advice. Let me assure you of one thing: It will not end. Ever. Someone, somewhere, will always have some sort of advice to give you whether you ask for it or not, whether you want it or not. And since I don’t think I’ve done my fair share in the advice area, and because I think I am the best parent on this planet and therefore an expert on this parenting thing, let me give you the best advice you will ever get (/end sarcasm):


Tuesday, October 20, 2015

Reading

Seeing Nicholas struggle with reading has been real difficult for me. He learned his alphabet real early and could point out letters by two. We would do letter flash cards and he would know all the letters in any order presented to him. He also learned the sounds to most letters. At two years old, I thought I would have an "early" reader.

But that was it.

Then he regressed.

It should have worried me when shortly after his 4th birthday I pointed to his name and asked him what he said. He looked at me blankly. I asked him what the first letter was and his response was "B." I thought he was being silly, just not interested. But that was to be the way it would be. He no longer knew which letters where what and letters and numbers were the same to him. While I understood confusing an "O" with a "0" I didn’t know how he didn’t see "7" as seven.

I remember watching him push all the button on his microwave attached to his play kitchen. He pushed them in order, one by one, and calling, "I, S, E, H, S, B, T, B, P, O." He was about three years old when this happened and while I found it odd, red flags did not come up.

By the time he started kindergarten he knew the alphabet once again, though confusing letters such as "b" and "d" and he could not write any letters. He could recognize him name. I felt that would be enough to get him started. But that just wasn’t the case.

The first half of kindergarten was a nightmare for all of us. He would not be writing any letters, with prompting and help, until the end of kindergarten. First grade saw a lot of progress. He began trying to spell words and though they were mostly incorrect his attempts were genuine and you could tell what he was thinking. I still have the paper on which he wrote "wtr" to let me know he wanted some water. It was very special. At the end of first grade he had a couple of kindergarten sight words down and he could copy words but his penmanship was almost illegible.

During the summer I was determined to not only not let him forget what he had learned but to also get him to make progress. I came up with a curriculum that included daily writing and sight word flash cards. He resisted a bit but did make excellent progress. He started reading level 1 books with help. I was proud.

The second day of second grade I get a call from his new teacher. Amongst other things she wanted to know what had happened to Nicholas over the summer. The child she was seeing did not match the report she received from the first grade teacher. He knew many kindergarten sight words and some first grade words too. He was blending sounds and reading. I beamed.

School has been in session for a month and a half and he is making progress.

Several months ago we started a subscription to Zoobooks. I knew he wouldn’t be able to read them but thought we could read them together and by the time he could read them on his own he would need to re-read them anyway. So yesterday he was flipping through the pages of one of the books. I spotted a short description next to an image and I asked him to read it to me. His anxiety kicked in and he was stumbling. I started breaking down the words, showing him they were sound combinations he knew. After two words he was reading. He was actually reading a Zoobooks magazine!

It was wonderful.

He is no where near the reading level is supposed to be at. But the way I see it, he is reading no worst than I was at the beginning of second grade. Actually, I know he is reading better than I was. Back then reading didn’t start in kindergarten and no real reading was done until second grade. So he is doing well. And making progress.

Friday, October 16, 2015

Dear Niece: The Only List You Need of What To Pack To The Hospital


I sat in the hospital for hours waiting for some giant bird to bring me my baby.
Eventually they rolled me away to the OR... there was not bird.

The clock is now ticking on baby’s eviction notice and thus comes the time to prepare for the hospital! Being your first, you never know how slow or fast everything will progress so I suggest having a bag ready ahead of time with the stuff that can’t be packed in advance easily accessible.

I prepared a bag and went to the hospital and some stuff was never touched and some stuff I had to have brought it afterwards. So here is my list of what you need to bring.

Monday, October 12, 2015

Columbus Day

I don’t remember every having the day off for Columbus Day while I was in school (kindergarten through university) and I definitely have never had the day off from work. And like most people in this country, I was taught that Christopher Columbus discovered America and opened the way for the colonies to be established and everything was just AWESOME! In the early grades, anyway. As I got older and learned more about Columbus and the true history of our country, skeletons and dirty laundry and all, the more I disliked this man.

Wednesday, October 7, 2015

Lessons: Coming To Terms (Or Not) With A Label

Disclaimer: this post is about a very touchy subject for some people.  I am not referring to any group of people in general nor am I talking about my thoughts or opinions about any group of people.  I am talking only about myself and my son.  Like so many things in the human experience, feelings are not black and white.  

Also, this post is long.  I wrote this over the span of many days, going back to it over and over as I went through this journey.  Instead of just giving you the end result I have taken you on the journey and thought process with me.  It may seem disjointed at some parts and that is because there were days when I did not write anything and then came back to add to it.  My hope in posting this is that maybe it will help someone, at the very least, understand that every child and family is different and that their journeys are different.


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Having a list of diagnoses has meant we have a list of reasons why he may be behaving the way he does, a list of suggestions as to how to change undesirable behaviour, a list of reasons why he isn’t like the others.  But it’s been just that, a list to attribute behaviour to.

He relies on a schedule so heavily because he has Asperger’s.
He paces because he has anxiety.
He doesn’t do well in large crowds because he has a sensory disorder.

One thing he has been struggling with is managing his emotions, specifically when he is upset or angry.  Big emotions are hard to understand for a typical child.  Add in Asperger’s, which limits his ability to comprehend the way our world works and limits his ability to learn by example, social cues, and previous experiences and it seems to be about one hundred times more difficult to understand.  So he goes to therapy to learn how to identify and communicate emotions but this learning takes time.  In the meantime he has regressed to more primitive ways of communication: hitting.