Back and Over the Bridge.

My son is going through a period of “lost information”.  This happens every so often. School is out.  Perhaps, that is the reason for it.  Or this may be related to a growth spurt, diet or temperature changes, a potential increase in night seizure activity, a toothache he cannot express, or change in focus from within him.   I really couldn’t tell you and he certainly can’t tell me.

We’re back to the facial recognition problem I posted about here. Shortly after I wrote that post, I saw an amazing change which I posted about here, when he showed me that he learned the names of all the peers in his kindergarten class.

He graduated.

He started “Summer Camp” with four friends.  All four were from his kindergarten class.  They were in the same classroom.  With the same teacher.  Yet every day that first week of “summer camp”, he failed 100 percent in identifying those he knew by name when greeting or saying goodbye in class.   He guessed wrong names in front of his peers every time.  Then, he would shout out names at random, as second, third, and fourth shots.  Not the way to win people over.

And now, he knows no one’s name.

Yet, he still remembers the babysitters he had at age 1-3 before his diagnosis.

He does not appear outwardly upset by this.  He has never discussed his peers.  When I drop him off in the morning at the playground, he wanders off on his own, seemingly content, and talks to himself but it still hurts me to see it.  He doesn’t seem upset to be alone.  He appears oblivious to the idea of social interaction of any kind.

Over the weekend, he was playing with a car.  He said, “It’s just like Daddy’s car”.  He followed this by saying to me, “I want Daddy to come to your party.”  My heart sank. [His dad did attend his party].

His birthday was at the end of May.  He had a huge party.  Many of his friends came.  I had about 35-40 people in my house.  I posted about it here.

I asked, “Do you mean your birthday party?”

“Yes.  I want Daddy to come to your birthday party.”  He looked up at me with those big eyes.  I wasn’t sure if this was echolalia (he was saying it before his party) or confusion or what.

“Did you already have your birthday party?”  I asked him, wondering if his sentence structure was just poor he was using future instead of past tense.

“Yes,” he answered.  (Whew…)

“Who was at your party?”  I asked.

“Daddy.”  he answered. [Wait- what? He just asked for…. Yeah, this is just how it is.]

“Who else?”

“J” he answered, who is the boy who called my son his best friend.  (This is good, I thought).

“Who else?”  I asked.

“Steve.”  he answered.

There was a Steve at the party, but he was a guest of a guest.  My son did not meet him. I had a sinking feeling I knew which Steve he was talking about.

“Who is Steve?”  I asked.

“The green one,”  he answered.

“Who is the green one?”  I asked.

“Blue’s Steve.”  he answered.

[Just so you know, Steve from Blue’s Clues, was not at our party.  To my knowledge, he is not making a living by attending the birthday parties of small children.]  Steve did throw a rather big soiree for Blue’s birthday and my son has watched this episode ad nauseam since he was less than a year old.

I asked him what he did at his birthday party.

He said he jumped.  (Hope! We had a bouncy house!)  He added that he jumped at Sky Zone.  This was his friend’s party – last week.

I asked him where Tootles’ party was at.  He said Sky Zone.  I said no, that was your friend’s party.  Where was your party?

He said home.  (Yes!)

Then I asked what he did at his party.  He said “Ate cake.”

“What else?”

“Blew out candles.”

What else?  (Ahem – bouncy house – the one we mortgaged our real house to rent?  The one that he spent all weekend in…)

He did not know.

I asked him if he had a bouncy house.

He said yes.

I asked what color it was. (color is his favorite topic).

“Blue?”  “Purple?”  “Green?”

“No. Gray.”

I sat down with him at the computer and we looked at the photos from the party.  I asked him to name names.  By the time we were finished, he was about 80 percent correct on his own.  When we started he was at zero percent.  His party was 21 days ago.

I just don’t know how he is wired.  My dad had wiring diagrams for electronics when I was a kid, all over our house.  I could use that kind of diagram for my son.  I wonder where and how the input goes into the brain, is processed, and either discarded or stored.

There is stuff in his mind that is instantly retrievable.  He knows makes and models of hundreds of vehicles by sight.  He knows the names of adults he saw once or twice from the time he was not even a year old.  He know television and movie characters.  He recalls every toy he’s ever owned.

But he forgets the faces of his peers less than a week after school is out.  Less than 30 days after his birthday, he’s forgotten everything about his party.  Why?

It’s like he’s driving, and this is his blind spot.  I don’t understand it.  I doubt I ever will.  I just accept it and work on ways to re-input the info.  At least what was once gut-wrenching for me, is now just a downer I’ve come to accept.  I guess you could call that my progress.

I see the hole.  While I used to cry dramatically over the gap, now I just sigh, and look for tools to build the bridge around it.

Advertisements

About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
This entry was posted in Autism and tagged . Bookmark the permalink.

31 Responses to Back and Over the Bridge.

  1. Mom2MissK says:

    That happens SO MUCH around here. It seems like just part of life with Little Miss, but at the same time it is disheartening, maddening, and depressing. For example, I always talk with LM about places where we are going during the day… I even make her pictorial lists — but inevitably, we end up with her asking me where we are going. This even happens when we are going someplace she REALLY wants to go — like her friend’s house.

    And then she repeats things from forever and a life time ago. Random things. Things that are so inappropriate for the moment that it takes a room full of us scratching out heads to figure it out.

    My mom uses the fantastic analogy of “messy drawers.” All those little bits are there — in our kids’ heads. Those little memories and nuggets are tucked away in drawers… but instead of the neat, ordered drawers you see in Better Homes & Gardens, our kids’ drawers are a disaster. Sometimes, they can go to those drawers and pull out just the nugget they need. Sometimes, they get distracted in the search and return with something unexpected. Sometimes, they wander off — forgetting they were looking in the drawers in the first place… but all of this DOES NOT meant that the information is not there.

    It is there. We have to believe. And we have to believe that with out hope, help, and support, that our kids will eventually be able to navigate those messy drawers and find what they need when they need it most.

    • solodialogue says:

      It just doesn’t stick in their heads sometimes. I wonder if the key is that it just has to be something that is plain important to them in the present moment and carrying forward. Once it becomes the past, if it no longer has significance it seems to be discarded.

    • solodialogue says:

      Although that makes no sense in terms of LM wanting to go to her friend’s house and forgetting! Yes, it is frustrating to make sense of!! An we can’t help of we don’t know how!

  2. OMum22 says:

    Karen, try not to be discouraged. I am lucky enough that Oliver can recognize faces, but he also lives in a perpetual present. I’m hoping that at some point, with visual supports, he might be able to tell me about his day when he gets home. Some children have problems recognizing their mother’s faces – I’m not sure I’d be good at handling that. I wonder if visuals might not be a help for Toots? You could put together an album of pictures with names. One great app you can grab for free is called Little Writer. You can put pictures of anyone in there and he can practice writing their name. ASD folks will often recognize pictures of people easier than their actual faces. Anyway, if you think visuals might help him and you want to bounce ideas off me, let me know. *hugs* my friend.

    • solodialogue says:

      Thanks so much, Deanne! You make a good point to me about the “recalling past events” piece of it as opposed to just learning the faces. I will check out the app you have suggested!

      Toots seems lost between melding the pictures of friends with their in person faces. In “3D”- he seems lost. When will Apple come out with an iHologram?! 😉

      And don’t worry. Setbacks happen. I keep on because I know that even though the hills seem steep, and we slide a little down, we’ll just get back up and keep climbing.

      • OMum22 says:

        Oh, I forgot to mention before – Lydia Brown who writes the blog Autistic Hoya – is autistic, has face blindness and is also a student at Georgetown. I thought you might like to hear that. 🙂

      • solodialogue says:

        I have heard of the “Autistic Hoya”! I will have to find and read her tomorrow morning! Thanks Deanne! I did like hearing that! 🙂

  3. Mary says:

    I’m 41yo and still can’t remember names/faces. I also have trouble with the names of objects. I used to tell people I worked with to hand me “the yellow bangy thing that you hit stuff with.” 🙂

    My 9yo has SPD. I’d never heard of it until 3 1/2 years ago when I had my AHA! moment and my entire life made sense.

    I can’t really help you here because I have the same problem. I might be able to explain it a little. It’s like with the mallet example above. Imagine a mallet (or the word mallet) in the middle of a sheet of paper and lines coming out from it with all the words that describe the mallet surrounding it, I can see all of those words except the word “mallet”. I can describe the mallet, tell you where it is, a funny story about a guy hitting himself with the mallet, but I can’t get the word “mallet” out. It’s like it is stuck in there. I do this with names, faces, actors, songs, you name it.

    When my daughter and I are both having this issue, it can be really frustrating.

    I think this is a result of dyspaxia. Wiki explains it pretty well in terms of memory under “General Difficulties”.
    http://en.wikipedia.org/wiki/Developmental_dyspraxia

    If there’s an APP that might help, I say grab it. I was just thinking maybe I could take pictures of people with my phone when I meet them and put their names with the pics. Phones are also good for taking a picture of where you left your car in a large parking lot. 🙂

    • solodialogue says:

      Thank you, Mary, for your insight. It may sound strange to you but just knowing you are working, have a family and are responding to me as a mother looking for answers helps me. This is because I worry a lot about my son’s future as an adult. I am an old parent. I gave birth to my son 4 days after my 44th birthday. I worry about the time when I am gone and how and to what extent my son may be independent.

      I believe and have heard repeatedly from experts that he will live and work independently in adulthood but every backward step tends to worry me.

      Interesting, how that loss of the correct word happens for you. I’ve had that happen to me momentarily off and on but not as a general rule. I also have a friend who had a stroke who similarly lost many words an relearned them.

      The brain is so complex and mysterious still in so many ways. Interesting reading on dyspraxia. Thank you. Your words carry a lot of power to me.

      • Mary says:

        Did you see at the bottom of the Wiki article that Daniel Radcliffe (among others) has dyspraxia? How’s that for hope?

      • solodialogue says:

        Yes! Amazing how that works. Your daughter is lucky to have a mom that really gets it. That puts you in a special place with your insight that many of us don’t have. 🙂

  4. Lisa says:

    This happens a lot at our house, especially when we have big routine/schedule changes, ala school to summer change. Tate just had issues telling me about who his kindergarten teacher was (and, um, he was IN LOVE with her). We did a lot of prompting and now he recognizes her and calls her by name when we discuss school. We have found if we frame our questions more as statements of fact, he has better recall and recognition. ie, “You just finished kindergarten. Your teacher was tall with dark hair. What was her name?” gets us the correct response 90% of the time. If we simply ask, “who was your kindergarten teacher?” he looks at us blankly -or- gives us some scripts. I find it very interesting how their brains process and store information, and how it seems to “disappear” for a while, only to return again. I need a diagram of Tate’s brain, too.

    The wiki info on dyspraxia was quite interesting. I appreciated the link…very much sounds like my little man.

    • solodialogue says:

      Very interesting about framing in a factual way! Thanks, Lisa! Yes, my questions were abstract. I will give your method a try and see whether that gives us more success. And yes, the link from Mary was great!

  5. I’m so sorry… My little guy lives a lot in the present too, it’s really hard to get any kind of information out of him other than his wants or needs. I just loved your last sentence though: “I see the hole. While I used to cry dramatically over the gap, now I just sigh, and look for tools to build the bridge around it.” That’s the kind of stuff that keeps me going. Looking for the tools and looking for the progress… You’re such a good mother to T though… And he’s *smart*, I know you’ll find the way to get his “electric wiring” (like in your diagram) balancing the input/output.

    Also, his birthday sounded like a total blast!! You made me giggle with remortgaging the house for the bouncy castle!! I bet you’ll get another peak before too long. Until then, hang in there..

    **hugs**

    • solodialogue says:

      Getting the wants and needs is great, though, but building on it is even better! Thank you for the kind words. We all do what we do and beyond to help our kids. I’m no different. And lol, yes, his birthday was fun! I’m hoping for a peak too. 🙂

  6. Broot says:

    Was summer school in the same classroom? I have trouble recognising people “out of context.” So, I could visit one of my centres and know every child and Mum’s name at a specific session, but if they walk up to me in the middle of the mall, I will recognise them but have no idea what their name is or where I know them from.

    If his school friends are out of context, maybe Tootles is having that trouble, too.

    • solodialogue says:

      Strangest part of it all, my friend, is that yes, it was the same classroom. Same teacher. Same kids. But I know what you are talking about. Sometimes, I run into attorneys or court reporters that I’ve worked with in the grocery store or the mall and I’m lost as to who they are. That I wouldn’t worry about. This is something different.

  7. Allie says:

    I feel like that is how all of Cameron’s conversations are. Everything is disjointed and it’s like he’s grasping at bits and pieces of related but not relevant stuff. I keep chalking it up to his age but I realized this past week after seeing gobs of 3 year olds in Bible school that Cameron’s communication ability really is “off”. There is so much that it just seems that he doesn’t understand but should understand. Sigh. Enough about me though. I just want to give you a big hug right now. I wish I had advice for you but I don’t. What I can give you is an understanding heart and hugs and love for you and Tootles. ❤

    • solodialogue says:

      Thanks for the understanding and hugs, Allie. I think when Toots was four (he was diagnosed at 3 yrs. 10 months), I had a much harder time with the differences than I do now. I’ve come around to a slow acceptance without all the emotional attachments that used to accompany it. The communication is “disjointed” but it’s almost like we have to ask the questions in a way that they understand. Sometimes, I think it must be like listening to a foreign language and picking up just a few words but not really getting the whole concept. It’s not that we can’t understand. It’s the way the communication occurs, I guess, that, at least for me, I have to be more sensitive about in trying to elicit information from my son. At the same time, I have to somehow convey to him, how others communicate so he can try to answer them in “their” own language. It seems that it is going to require the extra that we’re used to doing as special needs parents.

  8. eof737 says:

    This is heartbreaking but you are a trooper and a fantastic observer… I think making peace with portions of it will help you one day at a time. Sending hugs your way too.

    • solodialogue says:

      It’s not meant to be heartbreaking Elizabeth. It’s just part of a road we are on. It winds and it turns as it heads up the mountain. Most people take the interstate up to the top.

      Sometimes it seems like we might be lost and headed in the wrong direction but we just get up by a different route that takes us to some of the same places more than once and each time is fresh in its own way. 🙂

  9. Very interesting. I have to say I just kept thinking what a patient and kind mom you are. Your son is so blessed to have you. Also, the photos you chose for this piece are very effective. sam 🙂

    • solodialogue says:

      I’m no different from any one of us, but thanks. I’ll take it! I don’t know why but with this comment I wondered where “Sam” came from. I think of “Bewitched” – you know? 😉

      • Samantha has always been one of my favorite names…probably came from Bewitched. The last name Craft was my friend that died of brain tumor. Lovely woman. “The Bus” on my blog. Hugs.

      • solodialogue says:

        Samantha was the good one. Guess what my favorite name was growing up? …

        Serena. Remember her? 😉

        How lovely that you honor your friend in this way. I have to check the reference to “The Bus”. 🙂

  10. Pingback: The Tale of Bouncing and Dyspraxia. | Solodialogue

Leave a Reply

Fill in your details below or click an icon to log in:

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