Home & Mom & Dad

Charlie James Lei Jen
It never rains but it pours: This was the case for us yesterday, and not only because it rained rained rained cold hard & steady for most of Thursday. It's been a period of
much too much with the imminent change in Charlie's school situation sending ripples and tremors throughout us all. My, um, extreme display of emotion at a September 25th meeting with school district personnel was one earlier instance of the total family stress that has arisen from Charlie's school situation having devolved as it has. And on Wednesday evening, while he and I were driving hom, Charlie was extra obsessive; got very, suddenly, anxious; a major neurological storm occurred.


It was very difficult and I'm still processing how to write about it. On Wednesday, Jim and I stayed up for a long time talking about things. Both of us agreed, we weren't at all surprised that Charlie had gotten so upset over 24 hours after seeing the
big autism center. He always has a lag in processing anything emotional, any big changes, anytimes he himself gets really really upset.


I've noted that Charlie's been seeking out some old favorites like the rice crackers that used to be his absolute most desired food, to the point that, when he was younger, we knew that he would try his hardest to imitate sounds and words for one of the crackers. Also, yesterday night, Charlie asked for "blue" and proceeded to drag his big blue pillow (purchased years ago at a PetSmart store and restuffed with the insides of numerous old pillows) out of the storage area. The pillow was pulled up the stairs (the storage area is in the basement of this building) and, after Charlie had made sure it was still the same by kneeling and sitting on it in the dining room, was placed right before his bed. 

Comfort food and a mighty comforting big soft pillow (and in blue, the color of Charlie's beloved ocean): Just what the doctor ordered in a time of stress.


And there's a bit more (stress, that is). I am taking a 7pm flight to San Francisco tonight, for
Ngin Ngin's funeral. My numerous family members have been emailing back and forth about arrangements from a (Cantonese) translator to what should be on the program to the blanket covering that will take place at the wake on Friday to flowers (Charlie, along with Ngin Ngin's six other great-grandchildren, is contributing for a pillow of flowers; Jim and I contributing with my sister and cousins for a heart). My eldest cousin and I will be speaking about Ngin Ngin (for which I'll be drawing on what I wrote here.) I asked my dad if it might be possible to ask for contributions to an organization for individuals on the autism spectrum, Friends of Children with Special Needs. (We visited the center a few years ago and I would like to take Charlie there for its activities if we lived in California.)

Charlie at home I will only be gone from Friday evening till Sunday morning (am taking a redeye flight back). Sadly, I won't be able to attend Ngin Ngin's wake. With everything going on, I'd rather not be away from Charlie and Jim any longer than I might. Yesterday night two hours before Jim was to come home and after seeing me pack a suitcase with some puzzles to give to a friend's child and my black raincoat, just in case—as I was cleaning up the kitchen after we'd done some baking (Charlie impressing me when he got out the eggs for the batter on his own, broke them neatly in half, and put the shells in the garbage)—Charlie said to me,


"Home Mommy Daddy."


I answered him in the positive and added that, yes, home is Mom and Dad and Charlie. It's where there's Mom, and Dad, and a very fine boy named Charlie.

About these ads
Comments
7 Responses to “Home & Mom & Dad”
  1. emma says:

    I can totally understand Charlie’s seeking out old favourites, it’s very comforting in times of change. Hopefully soon things will return to a more even keel.
    When ever Dimitri has caught me packing away old toys to give to someone, he gets very upset and demands them back, even if they are things he has never really played with. And he is also very suspicious of suitcases.
    I hope all goes well this weekend, both at home and away -

  2. Linda Sullivan says:

    Charlie can sense he is being judged. Touring the school as a hypothetical is cruel on the part of the school. Their decision regarding accepting placement or not should be made without your family needing to “audition”.
    Needless stress for you all.

  3. emma says:

    Your totally right, I hadn’t caught on to the “being judged” until now, but we have also been through it plenty of times (and usually paid for it).
    The stupid thing is that we all know that being in an unfamiliar environment is not the best place to be “assessed”, it is unfair and un-necessary.
    Hope Charlie is having a better day today.

  4. autismvox says:

    Charlie had to do “intake” before at another private school–it was really more of a formality. When we got to the waiting room, he burst into tears and couldn’t stop crying. They had him do various activities and we watched through a two-way window and he started crying less and less—one of his home therapists was there and he was reassured by that.
    I got the sense that we might have found out a bit sooner, but one of the principals—there are 2 principals at htis center—was out of the office. I am hoping to hear something today (and trying to think of other things in the meantime).

  5. Dwight F says:

    Just catching up on reading your posts. It looks like you are coming to understand why so many on the Autism Hub can hardly say “ABA” without spitting.
    It isn’t just “rigidity” that is at issue with the concept of ABA. It lacks the assumption that Charlie is a thinking, reasoning person that can be effectively communicated with at a cognative level. It ignores that and doesn’t exersize those skills, hardly surprising if the ASC child is then slow to develop those skills when they have the ability to do so, or that the child would rebel when treated far below their natural abilities.
    So fortunate for Charlie that you and Jim took the time to build that cognitive communication bridge to him yourselves.
    P.S. Every thing is “ABA” these days. The name brand is self-perpetuating. G’s first school, even though ABA was largely detested there, filled reports in ABA language and justified their work in terms of how it was ABA just to get funding.

  6. Dwight F says:

    Oh, and my condolences on Ngin Ngin’s passing. Take care.

  7. Club 166 says:

    Although waiting on word of the upcoming placement is somewhat stressful, realize that you have done all you can up to this point, and that there is nothing else that you can do to influence the process at this point. In other words, try to let that go for now (as hard as that might be to do).
    Charlie sounds like he is actually coping quite well. He and Jim will be fine for a couple of days on their own. Though it will be quite sad, try to celebrate with your relatives all of the positives that Ngin Ngin brought into your lives.
    Safe journey.
    Joe

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

  • What’s all this about?

Follow

Get every new post delivered to your Inbox.

%d bloggers like this: