An Autism Diary

A day in the life of David Hartley

What Autism means for us – Part 1 (our history)

1 month old

Last night I read a post on a blog I have been following since shortly after David first got Diagnosed.  The writer, who goes by the screen name Autism Daddy, is a father of a severely autistic 9 year old boy and has mentioned many times before that he has never met any kids in his area that struggle as much as his son.  The post was him explaining exactly what severe Autism looks like in his home and family.  And it got me thinking…  It got me sitting back in my chair and looking reality hard in the face of what Autism here means for my son and our family…

I generally don’t like focusing on this particular subject as it hurts to be quite honest.  I am always one that strives to find some silver lining, or something humorous that I can laugh or smile at to help keep me tredging forward for the sake of my sons.  Also, to help keep my hope alive in some cases.  That is probably what is seen most here in my blog too.  The lighter sides of it all, as often as I can find them.  I have done a few posts here and there that provide a window into the reality of our daily struggles, but I have never been one that is comfortable focusing on that part.

2 months

Autism Daddy’s post though kind of sparked a personal challenge inside me to take that deeper, truer look at it all.  And since I have, I haven’t been able to get it off my mind or my heart so I have decided to share it here with you.  It will be in two parts.  First the history, then the closer look at what we face now.

My son is severely affected by Autism.  When diagnosed, they told me there was a range of numbers for the severe to fall into as well as the moderate, mild, and “shared symptoms” categories.  My son landed on the lower end of the severe range but because we had recently broke through on communication by using sign language, the doctor decided to give him an official diagnosis of moderate, telling me that he was tetering on that borderline but the communication was a huge acheivement.  Since then, David has seen both progress and sadly also many regressions.  Some of them depressingly severe in which he lost just about everything he had worked so hard with us to gain.

4 months

The hardest part is when I remember how he used to be… his first regression happened at the unusually young and tender age of 9 months.  Before then, he was talking months above his level, and had soared past just about every milestone there was.  And the ones he didn’t soar past, he nailed right on time.  Given his age, he showed remarkable cognitive strengths, advanced social skills, and well achieved gross and fine motor skills for his age group.  He said his first clear word on my friend’s birthday at the tender age of just 3 days shy of 4 months.  He was putting together simple but clear abbreviated sentances shortly afterwards.  Things like “help me” and “more milk mom”.  His doctors were even amazed with him at the time.

6 months (and already sticking his toungue out at me lol)

He was even starting to potty train (his choice) by the age of 8 months and had mostly completed it right before he had his first regression at 9 months.  We had brought home a potty chair so that we would at least have it based on the idea that we were told some can start learning by age 12 to 18 months.  Next thing I know, I am being woken up in the middle of the night by my little guy trying to get me to take him to the potty so his diaper wouldn’t get messy after us only showing him what it was once.

I am telling you all this so that you can have a better understanding of the fear, confusion, and sense of loss that hit me when he suddenly started losing it all.  By 10 months he was no longer talking, by 11 months he was completely silent and lost his skill to walk or even “cruise” on the furniture.  By 12 months, he had lost just about everything…

7 months

We worked with him as best as we knew how and he started to slowly gain back some primitive skills in the area of the basics, but mostly in gross motor areas which continue to be his strongest point today.  We didn’t know what had happened to him though, and I couldn’t accept the doctor’s opinion that he was just being “bratty” or was somehow purposely not doing these things.   We were eventually able to get him assigned to a new pediatrician that started opening doors of information that was slowly but surely leading us to what had happend to, and was still going on with, my son…

The diagnosis of Autism came within a year afterwards after being sent to a handful of specialists.  And that is when our travels in this sometimes scary, sometimes wonderful journey officially started for us.  The diagnosis was scary at first, but also a relief.  And in a slight way, it even gave hope.  I knew what my son and I were fighting now, and with knowledge comes power to do something.  Or at the very least, the feeling that you have power.  Instead of continuing to focus on all that was lost, I now had enough light to focus on what to do next in order to help him gain as much of it back and more as he possibly could.

9 months

… to be continued later …

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10 Comments

  1. anautismdad

    There is such strength in laughter. It is the sound of someone dancing in the rain. There are steps forwards and steps backwards in the journey we take, and it is a journey which in turn brings tears and then laughter. It is a journey that takes strength and the strength when it is lacking can be found in others, but also just in the sharing of thoughts in a blog as you do. Thank you.

    • Thank-you. I really appreciate this

  2. This is a fantastic post ;)
    You have been, and are, on an amazing journey. I guess you need to take the credit for doing something that isn’t that easy to do. It goes to show, not that you have to prove anything, that you and your family are a strong family unit. This can’t be said for many families in the modern world.
    Keep laughing and smiling, it really does help :)

  3. marciakayx

    Oh, I love this so much. We do truly feel we know you and David and Joshua. Thank you for sharing so much of your lives with us. Love you!

  4. Sylvia

    Wow! That is quite the story! I understand your need to always be looking for the silver lining or the humorous part of a situation. If we lost that we’d be crying all the time. Waiting for part 2!

  5. Thank-you everyone for your encouraging responses. I appreciate it greatly. : ) Part 2 is being worked on now. : )

  6. With you on his side he can only shine.

    • thank-you gentle stitches ((hugs)) : )

  7. It isn’t easy to be as strong as you and your family. Love you all :)

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  1. What Autism Means to Me « An Autism Dad

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