Autism?

Before I dive into the title of the blog let me catch up on some other happenings.

Gwendolyn is just doing so well.  Everyday I get home from school I swear she has grown since I saw her in the morning.  Her new favorite thing to do is laugh.  Grandma can get her rolling better than anyone else.  I tried giving her some rice cereal the other day and she was NOT a fan.  I think we’ll wait a couple more weeks and try again.  She is getting to be a bit of a scooter and will move mysteriously.  Maybe she’s a crawling prodigy but only when no one is watching.  😛

I had a cardiology appointment last week and it wasn’t spectacular.  I haven’t been very diligent about taking my medications and when I got a cold it really started to effect my quality of life.  When we went in we found out that back in December my heart had enlarged and mom and I don’t remember them ever telling us then.  I probably would have been better about setting my appointments on time and taking my meds.  An echo showed a bit of a decrease in function and they gave me 3 new medications to take.  I hate them.  I feel about the same now as I do when I at the end of a pregnancy.  No energy, can’t breathe, can’t lay down, etc.  One of the pills I have to take is a diuretic and I can tell it’s working but I think it’s the main culprit making me sick.  I now have to monitor my weight, heart rate and blood pressure every day.  I’m hoping that things will mellow out of school is going to be very hard for the next 6 weeks.  I go back in for a check-up next Thursday.

Now for the Autism part of the post.  Let me start at the beginning.

Last time I posted I mentioned that JD qualified for Kids on the Move for help with his speech development.  When they came out to test him I let them know that I was sure he wouldn’t qualify but just wanted to be able to tell the doctor and nurses that had suggested he be tested that we had done it.  I was shocked when he qualified.  This started a snowball rolling that we weren’t prepared for.

During JD’s 3rd visit the subject of Autism came up with the therapist.   Mom explained that I’d been asked on more than one occasion if JD was Autistic, sometimes by strangers.  I would always tell people that he was just big for his age.  I told the therapist that I wrote it off as people expecting to act like a 3.4 year old and not like the 2-year-old that he is.  She prefaced what she was about to say by letting us know she couldn’t diagnose anything, I knew when she said that I wasn’t really going to like the next part.  She said that before she worked for Kids on the Move she worked exclusively with Autistic kids and that she has quite a few clients now with Autism, and JD does in fact show many signs of Autism.  We then discussed how we would go about having him “tested”.   She said she was a little concerned with how much JD will seek deep sensory stimulation, and maybe an additional therapist would help him with that.

I spent about 6 hours one day on the phone with many different people.  You see since JD wasn’t showing severe signs of Autism I was finding it hard to get him an appointment sooner than 5 months out.  His young age also seemed to be an issue.  I learned that many parents that have kids with a more mild delay/disorder don’t notice or get their kids tested until they are in a kindergarten setting where teachers might notice it.  JD on the other hand is lucky in this aspect because he did qualify for Kids on the Move and have astute doctors that saw that something about him was just a titch different.

Now I say different because I mean just that, different.  Not bad, not wrong, just different.  JD is still, JD.  I want to make that clear.  He is a very bright little boy and I don’t expect anyone to read this and think that we feel that he is defective in any way.  He is still our first miracle baby and we are BLESSED to have him in our family, no matter what.  Nothing will change that.

I digress, sorry.

I finally got him an appointment this past Friday.  Jeremy, JD and I all made the trip to Provo.  JD was having a very active morning but once we got into the office alone he loved all the new toys and was great about letting us all talk.  This appointment was with who I like to call the “gate-keeper”.  He is the one who gets JD’s history, talks to us and observes him to decide if there is even a reason to go any further with this process.  We went in there hoping for the best.  Someone to tell us he’s just a 2-year-old acting out a bit, and to have a nice life.  We left with a promise we’d be contacted by someone who specializes in kids JD’s age and to expect weekly family therapy.  We were told it may be quite a long road to find a diagnoses since there is a chance it is Asperger Syndrome and that isn’t usually diagnosed until 4-11 years old.  At first I was upset.  If they were going to give him a diagnoses I wanted it then.  Once Jeremy and I talked about it more however I realized I don’t want them to just slap a diagnoses on it and send us on our way.  If there is an issue I want them to take their time about getting to know JD and our family so that they can be certain.  Nothing is going to help JD if he isn’t diagnosed properly.

I know that many people look at labels as being a bad thing, I however think they can be empowering.  It can help us help JD, and knowledge is power.  When I start to mention some of JD’s little “quirks” that are alarming the therapists/doctors I often hear from other mothers that it’s normal for kids his age, and yes many of them are… however the combination of many of them and the severity of them are what raises the red flags.

I had one mother I talked to whose son has Autism tell me that once you’ve met one kid with Autism, you’ve met one kid with Autism.  Her son was just older than JD when diagnosed and gets worse the older he gets.  There is a huge spectrum to Autism.  The kids I’ve known with the disorder in my life were mostly pretty severe, JD (if he has it) is not.  But like my cardiologist tells me “I don’t think it’s wise to pretend something isn’t there.”  In JD’s case, us meeting with therapists and doctors will only help us understand things more.  Help us grow together with him, what small child wouldn’t love time even just once a week where mommy and daddy focus ONLY on them!

Am I scared, yes.  I would lie if I said I haven’t cried quite a few times about this whole process.  I’ve expected none of this and am blessed to have such an amazing supportive family.  We are starting to get an idea that it’s going to be a long road, but we are optimistic and glad that we have such amazing resources available to help us, help JD.  I know this is a subject that many people have strong feelings about, positive and negative.  I have a couple of friends that have been down this road already and I am thankful for their support since I don’t know very much about things right now.   With both Jeremy and I dealing with working and school right now life is packed, we need all the positive thoughts we can get.

I will try to keep everyone posted on things.  I’ve not been emotionally able to blog about it, maybe it’s because it’s all so fresh right now.  A quick facebook update is about all I’ve been able to deal with, but this evening I just needed to document my thoughts right now.

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6 thoughts on “Autism?

  1. It sounds like you have a great attitidue toward your trial…no…I can’t call it that…your new challenge. That will make a tremendous difference in JD and your experiences. You’re a great mom and JD is a great kid!! Luv ya!

  2. It’s fantastic that you followed through and that you’re not just getting the “he’ll grow out of it” response that so many doctors give to ASD families. You are a great mom! Like I said before, you’re welcome to contact me if you need resources or just to vent. I’ve been there.

  3. Bobbie, I’m proud of you for looking it directly in the eye, no matter what “it” turns out to be. I think it’s awesome to be willing to accept whatever the diagnosis is and look at it as an opportunity to help JD more. It’s got to be so scary, and I know you’ve been through a ton, but you are awesome and I know that you’ll be able to handle it.

  4. First, your right…Gwen is getting bigger and very smiley these days! 🙂
    Second, I hope that you are able to get used to your meds.
    Last, this is a good thing for Deeds. And yes, Deeds is still Deeds. 😉

  5. Pingback: Pretty Good Day « Bobbie's World – y tres mas

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