Tuesday, January 25, 2011

My daughter has autism.

I think I'm ready to blog about this now.

We had another meeting with the special education department at Elanor's school last Friday. They've been testing her for the last few weeks, and the meeting was to go over the results of their tests. The final diagnosis, given her global delays and other signs, was autism (mild to moderate).

Autism.

I have to admit, I got weepy. It wasn't exactly a shock, as they'd mentioned the possibility at our previous meeting, but it was sort of hard to swallow.

The good news is that they said she was very bright and lovable, and kept reiterating what a joy she was to work with. They're confident that she will make excellent progress once she starts special ed classes (she will be pulled from her regular classroom for 90 min/day for academic assistance and speech therapy, and she'll also be getting some physical and occupational therapy, about 30 min/week).

Now, a request: I know next to nothing about autism and I'm looking for resources. Specifically, if there are any Catholic resources, I'd love to know about them. I feel much more in control of a situation if I've educated myself about it. I've scoured our library's digital catalog and have a list to take with me to the library this weekend, but I'd appreciate recommendations as I don't really know what's reliable and what's not at this point.

For the record, I've already decided to disregard pretty much everything Jenny McCarthy has written. There may be a link between vaccines and autism, but I tend toward thinking the link is due to aborted fetal stem cells and not thimerosal. On the other hand, we have refused all vaccines made with aborted fetal stem cells since the day Elanor was born. I think she might have gotten one by accident at some point, but by and large she hasn't received any. She's never had the MMR, for instance, since Rubella is one of the unethical vaccines. Yet, she has autism.

I'm sure there's a genetic component. I know next to nothing about genetics, but I wonder if a history of mental illness in the family (which we have, in spades -- Collin has bipolar disorder, for example) predisposes someone to autism. As far as I know there aren't any other cases of autism in either of our families, but, as Collin pointed out, there are a lot of autistic tendencies -- and who knows about relatives who may have had it back when it was infrequently diagnosed?

I have to admit I'm rather grateful we're not homeschooling because I simply would not feel equipped to help Elanor in the way that she needs. I'm thankful that she goes to a good school with a very competent special education staff.

At any rate, please pray for us as we embark on this new journey with apprehension but with faith and trust in God. I know He will be with us every step of the way.

9 comments:

  1. Oh my goodness, the title made me gasp. I am just out the door to get my kids, but I am praying! Do they know at this age if it could be Asbergers? (spelling?)

    At some point, I would be so interested to know what the signs were...

    God bless sweet Elanor!

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  2. Basically, autism is characterized by language delays whereas kids with Asperger's tend to have no language problems.

    This is a good link detailing the difference.

    Elanor is very speech delayed. We've noticed for quite some time but we've just been hoping she was a late bloomer. Her brother, at almost-3, talks about as well as she does right now.

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  3. Hi JoAnna

    I'm new to your blog and your title caught my eye. My comment may or may not bring you comfort. My son also has autism (ASD), and it was difficult for me to accept too. I remember waking up in the middle of the night, crying.

    God has given people like you and me (who have mildly autistic children)"invisible crosses." you will be met with a lot of disbelief, cynicism, and advice on what is "really going on". I have had that from my whole family, who didn't believe that Max was autistic. They thought they were being helpful, but what I really needed was their support.

    Lean on God through all this. As you had said, trust in Him. Only He knows truly how to help your daughter, and He will show you. I used to pray by my son's bedside at night when he was sleeping--begging God to "Show me how". No one knows what a cross this can be--but it's meant to be invisible so that you only go to God for his comfort. I finally learned to do that and since then, I have no more sadness. Max to me, seems like a normal six year old boy. We don't even think of him as "autistic", because he is so much more than that. He still has autistic symptoms, but they are just symptoms. They don't take away the person that God made Max to be.

    I'm not saying that all goes smoothly all the time. As Max grows, new challenges come up. We do need help from the "experts" at times, but have found the confidence to know that WE are the experts--his dad and I are the only ones that really know how to get through to Max.

    All of this is through lots and lots of prayer and trust. Thank God you have a faith to rely on, because so many parents don't--and what a cross it is to bear alone.

    There are support groups out there, but I would be careful. I stopped going because they were basically telling us to not discipline our children. I went home confused every night and something about it just "didn't feel right". That is just my experience, that God didn't want me relying on support groups. He and only He is my support, and Max is doing just fine.

    If you have questions, I would be glad to offer what I know from my own experience---otherwise, I will keep you in my prayers.

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  4. Sorry--I forgot to post some links that might help. This is from my son's therapy ("The Therapy Place") which has really helped him. I know you are in Arizona, but the website has some related links that you might find helpful.

    http://www.thetherapyplace.net/links/index.htm

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  5. Becky, thank you. I really appreciate the perspective from someone who has been there. Elanor is six years old, too. :)

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  6. Remember, I'm a SpEd teacher. Any specific questions, ask away. I've taught just about any disorder you can think of and currently have a couple of kids in my class with autism. The degrees vary very widely! The best thing is to catch it young and get her as much help as she can. So glad you are doing this early and that school is helping. I'm sure you will see a lot of improvements with all her therapies and services soon.
    And about vacinnes, my para pro sons were bother diagnosed with autism. One is higher functioning than the other. Their father has some mental issues and they are divorced. Her daughter, born by a different father (her current husband) does not have autism. Same 3 kids, same mother, same vaccines, but only the two boys have it from the same father. I really do think genetics have a part in it. THere has also been talk about something layind dormant and it is triggered by vaccines, a fever or something like that.
    I have noticed that some of the kids I have served with aut. have siblings that do not, so you really never know. THe most important thing is getting her the services she needs and really working on the verbal and language skills!

    Kim O

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  7. JoAnna, that link was very interesting and helpful. And, I am so glad Becky saw this, and that you are not alone. I will be praying and also hoping for any updates. Elanor has a great mommy!

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  8. My 18 year old son has been in the special Ed system for years... There was always a disagreement on a diagnosis of HFA (repetitive behaviors and low average intelligence) or Aspergers (social probes but no language delays)...
    Everyone agreed he also had an auditory processing disorder, so that is what is on all the paperwork...

    He could not read at age 10 and was being bullied and had no friends....

    Last weekend he was out every night with the cast of the winter play at his high school, he is on National Honor Society, he cantors at our Catholic church and has the lead in the Spring Musical. He still cannot memorize his multiplication tables or tell time off a clock with hands, but he is an awesome young man looking forward to community college in the spring to study elementary education and drama!

    Focus on what she CAN do, my son's musical talent was the lifeline for him socially and feeling like he could do something well!

    And we moved from Catholic school to public for the special Ed services and they were invaluable! I could not teach him myself, I was clueless how help him (and I am a well-educated attorney)!

    Blessings as you start on this journey!

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  9. Living for the Lord, thank you for your encouragement! Your son's story is inspiring.

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