Carrie Fancett Pagels and Autism Awareness Month: Our Journey Through Autism—A Glimpse

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Hi! Jillian Kent here with Carrie Fancett Pagels who has graciously offered: A Kindle copy of her new release, Return to Shirley Planataion: A Civil War Romnace. Please leave a comment and a winner will be chosen next Sunday, April 14th. The contest will close at midnight Pacific time on Sunday and winner posted on the afternoon of the 15th. Carrie’s got an interesting post that is important to many of us. Please welcome Carrie.

Did you know that April is Autism Awareness Month? And that there are many Christian authors who have children on the Autism Spectrum? Believe it or not, my son’s issues in his journey of overcoming autism (an ongoing process and he is doing great, PTL!) actually started me on the road to writing again. Early in life God called me to write. Then I went off in my own direction and I became a psychologist.

When my son was 13 months old he was given a MMR shot (I didn’t even know what shot it was he was given that day that was “different” from the others because he had gotten all of his shots and I didn’t pay any attention to what exactly was given. ) He quickly developed horrible diarrhea that would not clear up. This was right before our vacation and during the trip he was completely different than he was normally—not wanting music for instance whereas he loved lullabies and music prior to that time. He also had been a happy interactive child but became fussy and inconsolable. I had to keep him separated and quiet to have him soothed. Needless to say that was nightmare vacation. His pediatrician thought he’d picked up a virus on the trip but he’d had the symptoms before we left.

He was nursing still so we determined it wasn’t from formula (later, however, we did discover his allergy/sensitivity to milk.) We took him to a pediatric gastrointestinal specialist who ran a bunch of tests, threw up his hands, and told us there was nothing he could do to stop Clark’s persistent diarrhea. So now we are two months out with a child who is now fussy, avoiding eye contact, and behaving differently than he ever had before and with a chronic issue with his tummy. His fine motor skills stopped developing. I took him to a naturepathic medicine doctor who diagnosed his issue as likely caused by his last vaccination. She gave him drops to take that had his diarrhea stopped within twenty-four hours! And recommended he not have any more. We had improvement with his tummy . Still some issues, particularly with fine motor. As a psychologist and someone who’d worked in a hospital with neonates for several years, I was a little skeptical and worried about missing any more vaccines but we waited. I was working, had a teenager, was coping with my own rheumatoid arthritis, which had worsened, and coming home to a child who was having some continuing problems.

At two years old, at a sick child appointment, I allowed them to give my son another vaccination. Bad move. After that shot, he spiraled down into screaming fits, had staring spells, ended up doing so many bizarre things I’d rather not include them here, but needless to say, I did, then, research what did he have given at 13 months and 24 months and it was MMR vaccination. I know there is conflicting research on this but I can only say from our experience what happened. I believe there are a combination of factors that make the MMR result in a child going into autism and one of these days we might know what the exact mix is. But what some professionals say is that a genetic predisposition combined with illness (kids are not supposed to get shots when they are sick) and specific vaccines can bring on the onset of autism symptoms.

How does that affect my writing? When Clark was at his worst and I wondered how I could cope, I told my daughter that we should write a fantasy story about the stuff he did and do a story where there was, ultimately, a good resolution. So when he’d nap, I’d sit and pound out a story about a time traveling autistic baby and toddler and ultimately young man. I hadn’t written that much since I’d dropped out of grad school to write a secular manuscript–that one is copyrighted but thank God was never published. It was very therapeutic to write a story that held a message of hope for myself, my son, and my daughter, who was also stressed by her brother’s change. She babysat him and he’d been a wonderful baby, cuddly and sweet. At 9 months old he’d roll a ball, giggle, and make great eye contact with his older friend. I have pictures from 12 months, when his grandparents and family friends were visiting, right before the shots that started the change. We had a happy interactive little guy. We’ve been on a long journey. But God is right beside us. And as part of my journey, I began writing again and joined ACFW . And I just published my debut fiction novella “Return to Shirley Plantation: A Civil War Romance.”

Question: Do you have a friend who has a child with autism? If so, have you been able to do anything to help your friend, such as babysit and if so, how did that work out?

22 thoughts on “Carrie Fancett Pagels and Autism Awareness Month: Our Journey Through Autism—A Glimpse”

  1. Wow, Carrie, that is so hard! I never realized the MMR vaccination had that as a side effect! Such a direct correlation! I never knew. And what a heartbreaking thing to happen to your family, although I know what a blessing he is to everyone, and that he’s a sweet and happy guy now.

    My background is in special education, and all kids are a blessing. I’m glad to have seen more information this month around the internet about autism. It’s good to educate ourselves! Thanks for sharing your story, Carrie. HUGS!!! And hugs to you too, Jill!!!

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    • Like I said, it seems to be a combination of a number of factors rather than one thing. But for my child, I know what happened and I pray my own grandchildren will not suffer what he’s been through. PTL he’s doing lots better. People have no idea how hard it is to deal with the really terrible parts of the journey. But God does, and He is always there! Thanks for coming by!

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  2. Carrie–something else about you that I am learning! I have some friends of some friends who are in ministry and they had a similar experience from immunizations, except their daughter is unable to walk or speak, and is also blind. It is scary to think that there are known issues, that the medical institution is just plain unwilling to talk about! Our oldest son was born with brachial plexus palsy in his right arm and we were told by the doctors that it was “just something that happens sometimes”, only to learn about 4 years later that it is usually birth trauma caused–and in our case was caused by the forceps delivery. Fortunately, after being anointed with oil and prayed for during our church service–2 weeks in a row, God healed hi and he is now right-handed!

    Also, I did not know you had RA–my mother has suffered with RA since I was in middle school–it is an awful disease. She has many rough days, where she couldn’t even get out of bed on her own, and others days when she does pretty well. I will be prayig for your family in the best way to work with your son and that God will help you to bear with the nearly constant pain of RA. May God bless you both.

    You don’t need to put me in the drawing because I already have Carrie’s book–just have to finish my current book, so I can start reading it…
    Vicki

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  3. thank you for sharing your story, Carrie. We have similarities concerning the MMR and our Aspie boys. Thank God mine is doing better, too, but we had several years of meltdowns and difficulties with sensory issues, to name a few things. Thank you for using your platform to raise awareness. Your novella is wonderful, and a testimony to your overcoming journey with God! Nothing keeps you down, my friend.
    hugs!
    Kathy

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  4. Hi Carrie and visitors,
    I’m still trying to figure out what the DSM-V is going to do to all our kids with changes in diagnois. Check this out and you’ll see what I mean. What the DSM-V will do for us. http://lifedevelopmentinstitute.org/aspergers-syndrome/dsm-v-to-exclude-aspergers-pdd-nos-wait-what/

    My oldest daughter was diagnosed with a non verbal learning disability when whe was 11. Now 23, we are still struggling with life long issues. First we’re on the spectrum, then we’re not on the spectrum. Life is a not so pleasant merry-fo-round for kids and parents trying to cope with all this. My hubby and I are both social workers with a lot of mental health experience and if we still get confused when they change things like this. For the longest time they didn’t know if Aspergers and NLD were the same and now I don’t think we’ll ever find out. So frustrating!

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    • As a psychologist for 25 years I saw so many different changes in diagnoses etc. and what matters most is what is done and what works. As a parent, I think we often know best. But we need to be listened to! I always tried my best to do that with my clients and their parents! Bless you for serving our community, Jillian! NLD can be really debilitating and has its own set of issues. Thanks for having me on! Blessings!

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    • You are a wise woman, Carrie. It’s not the diagnosis that matters so much but pursuing the treatment that works the best. I still feel guilty for not being able to stay at home and home school my daughter after she was diagnosed but we weren’t in a position to do that and frankly I don’t think I would have been a great stay at home mom. Still I wonder how much of a difference it would have made, but I’m smart enough to know that we all do the best we can do at the time. I think my hubby and I were convinced that every year was going to get better, but that wasn’t the case. It’s probably a good thing that we don’t know what will happen in the future. Thanks for addressing this topic. I’m grateful that you did.

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  5. I work at an elementary school as a special ed para so I have a special spot in my heart for autistic kids. This is my 6th school year and am beginning to see it as God’s calling for me. I know it is a struggle for the kids and for their parents. Blessings to you and thanks for sharing your story with us.

    pmk56[at]sbcglobal[dot]net

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    • PAM, one of our dear friends, Martha Phillips, was Clark’s special ed para for pre-K, and also our neighbor, and our minister’s wife so we were triple blessed. Bless you for serving our special needs kids. Yes, I believe it is a ministry! Hugs!

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  6. thanks for the chance to read carrie’s novel…I have a good friend whose daughter is autistic…”A” is 14 years old…and a beautiful girl.

    karenk
    kmkuka at yahoo dot com

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  8. This sounds like a good book. Thanks for having the giveaway. A professor at college and another student have children with autism. But I’ve never really interacted with them other than playing a game with my professor’s kid when I was at an end of the year party.

    Rose M.
    harnessrose(at)yahoo(dot)com

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  9. I am a retired special education teacher. I taught at the high school level for 25 years. Most of my students were higher functioning and able to get a regular diploma. Or, at least, that was the goal. I worked with many wonderful parents over the years. I believe that the family is the key to helping a child reach his/her potential. Parenting is such a difficult job for those of us, who want to be the best parents possible. It is all the more difficult, when children have special challenges.
    Blessings…
    may_dayzee (at) yahoo (dot) com

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  12. I have a friend whose son is autistic. He is such a sweet little boy. I speak to him each time I see him at church but he doesn’t acknowledge me but that doesn’t stop me from just saying hi to him! Linda
    dmcfarl101(at)juno(dot)com

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