Sunday, October 20, 2013

Guest Blogger Carla, the Scientific Seamstress

(Taya) Hi everyone!  I am so excited to have Carla, the Scientific Seamstress on the blog today!  Thank you Carla for sharing your story!  The weighted vest pattern is only on sale through tomorrow, so remember to purchase it so you can participate in the sew along.  The sew along starts tomorrow!  I can't wait! Pattern link:

Hello!  I’m Carla Crim, the Scientific Seamstress.  My husband and I are parents to the most awesome (almost) 9 year old kid.  He is a science wiz, Cub Scout, 4H-er, and Futurama superfan. 

A few months ago, he was diagnosed with high functioning autism, ADHD, and anxiety.  Even though I have good friends with kids on the spectrum, and have a background in biology, I really didn’t feel like I was equipped to deal with the diagnosis.  I checked out books, read scientific articles, visited websites, etc., but by far the most helpful and uplifting advice has come from other parents.  Through Facebook, online forums, and blogs, I’ve “met” so many moms and dads with exceptional kids.   Every story is different, as evidenced by the diverse and wonderful children featured in this series.  Thanks, Taya, for giving me the opportunity to share our story.

Louis was actually a very easy baby.   Some of it was his disposition, but we also had a really peaceful home setting.  I was able to stay home with him, and adapted to his routine right away.  He nursed and slept when he wanted, and if something made him uncomfortable, I immediately fixed it.  I spent a lot of time on the computer, feeding him and interacting with other moms on online forums.  In fact, the first seeds of concern were planted when I’d read about other babies the same age meeting developmental milestones.  He was perfectly happy and interactive, but wasn’t even attempting to roll over or sit up.  The doctor did not seem worried, so I tried to put it out of my mind. 

When he was about a year old, we moved out of state.  I was so relieved when he crawled at 12 months, and even more relieved when he finally walked at 18 months.  Again, the new doctor did not seem concerned about the delays, especially since he was doing fine socially and his fine motor skills were good.  Just like in the old house, I structured my days around his schedule.  I had a small business making and selling doll clothes, but as he got mobile, it became harder to focus on intricate projects.  I made the switch to patternmaking because it allowed me to spend more time on the computer, nursing him or keeping a close watch while he played.  Like any toddler, he had his meltdowns, sensitivities, and could be just plain recalcitrant.  So, I just went with the flow and let him be the boss…path of least resistance.


When he was about 2, I noticed that he would shut down in loud or hectic settings.  Most of the time, he was in his stroller or in a backpack, so it really wasn’t a problem.  On the rare occasions that I needed him to walk and hurry along, though, it was very upsetting for both of us.   Train and air travel was very difficult, especially if I was on my own with him and schlepping bags and carseats.  Otherwise, he was never what either one of us would call problematic.  He did exhibit some “quirky” behaviors which I now know are textbook…lining up cars, watching the same programs over and over and over and over, etc.  He wasn’t that into playing with other kids, either.  He was great with adults, but didn’t seem to “get” other kids.  We attributed this to him being the only little one in the house. 


Like any mom, I was so nervous about sending him off to kindergarten.  Thankfully, he had an absolutely wonderful teacher, and his first year of school was very happy.  He didn’t seem to have much interest in ABCs and 123s, but he was still learning and getting on just fine.  The real issues came to light in 1st grade.  He’d come home sad, wouldn’t talk about his day, and wanted nothing to do with homework.  His teacher pulled me aside at open house, and said we needed to have a conference in advance of the scheduled conference day.  At that meeting she described a little boy that just could not be my son – miserable, uncooperative, and lonely.  I was heartbroken.  We agreed that he should be evaluated by the speech and occupational therapists.  He was tested, but no real problems were found and therapy was not recommended.
I tried to talk to him, and all I could get out of him was that the other kids were chattering too much, and he just couldn’t think.  My husband and I tried to work with him on his learning, but it was so painful.  I just wanted him to be happy, so I didn’t push too much.  Part of me felt like a bad parent, but I just couldn’t take the tears.  Things greatly improved when he started switching classes for math.  The teacher was very sweet, but also had a good handle on discipline (no chatter).  He was also with a different group of kids and loved the subject.  We were so thrilled to get papers with smiley faces and stars for a change!

Unfortunately, by the close of the year, he was still having problems in his main classroom.  He was tested for ADHD (which just meant surveys by parents and teachers), and the results indicated that he might have an issue.  I talked to his doctor, and we agreed to “wait and see” if he needed medication, etc.  We moved (again) early in 2nd grade, and his new teacher immediately picked up on handwriting issues, and was able to get him right into occupational therapy.  While his grades were improving, his social skills and attitude were not.  It was just like the previous year – the kid at school was totally different from the kid at home.  Even though he was clearly very bright, he just wasn’t doing well.  His new doctor had him evaluated for ADHD, and got the same results.  He referred us to a Developmental Pediatrician. 


It took many months to get an appointment, but they worked us in just before the close of 2nd grade.  Most of his evaluation consisted of just talking to the doctor, and you guessed it…more surveys!  At the end of that appointment, she said that his formal speech patterns and other behaviors were very suggestive of Asperger’s (which she explained is now categorized as high functioning autism).  He is clearly bright, as evidenced by his vocabulary and scientific pursuits.  The ADHD and anxiety are probably a result of the autism, and the more I learn, both are very likely related to SPD.
The diagnosis was truly life changing, and in a good way!  For Louis, it meant that he could get services and accommodations that were not available before.  We had a 504 meeting before the start of 3rd grade, and in addition to OT, he is getting counseling (group and individual) and speech therapy.  He gets extended times for tests, and can take them in a quiet setting.  Most importantly, he gets understanding!  His teacher is great with him, and knows how to keep him happy and on task.  For me, it is like a weight has been lifted.  Even though doctors told me my child was fine, a voice inside told me that was not the case.  When he reached school age, I blamed myself for his issues.  I felt like a lazy/ineffective parent for not pushing harder.  Now that we know what we are dealing with, we can better help him.  On a daily basis, we are blown away with how he is growing and changing.  I’ve always loved him, but for the first time, I am really appreciating all the things that make him special.


1 comment:

  1. Louis is such an amazing boy, delivered to exceptional parents where he thrives
    in all things scientific and appetizing. Now there is one very lucky boy!!