HOLIDAY SUCCESS

By Kent Heckenlively, Esq.

I admit that on the night before Christmas I was a Grinch.

I was struggling with a cold, we were trying to adjust our daughter Jacqueline’s seizure medications because she was having drop seizures, and I wondering if all the efforts we’d been making over the past few years were worth it.

But then on Christmas day we went over to my in-laws with Jacqueline and our normally developing son Ben.  Over the past nine years our appearances as an intact family have been few and of limited duration because Jacqueline will inevitably become agitated, start screaming, and we’ll leave.

This time it was completely different.

In the living room were no fewer than fifteen people crowded around the Christmas tree, including four rambunctious boys under the age of ten who ripped through their Christmas presents from grandma and grandpa with great abandon.  And through it all, Jacqueline calmly watched the entire scene, sitting at the table, eating her food while shifting her attention between the noisy boys and her book.  We stayed for four hours.

I used to say Jacqueline was like a wild animal, trying to bite me or anybody who came near her thirty or forty times a day.  But comparing her to a wild animal is not an accurate description.  Wild animals don’t have patchy hair, dark circles under their eyes, and look so emaciated that other family members fear that if they catch a cold they’ll die.  Wild animals are healthy, they’re vibrant, and there’s an environment in which they flourish.  There was no environment which was good for Jacqueline.

These days she doesn’t try to bite people.  Instead of attacks, she greets people with smiles.  She has amazing eye-contact.  When she looks at you and smiles, it feels as if you’re having a long conversation with an old friend.  She looks healthy.  Instead of constant diarrhea her stools are generally firm.  Although she is very unclear when she tries to speak, she tries to talk at all the right times.  In context, she can usually make herself understood.

It used to be I had a wild animal for a daughter.  Now I have Scooby Doo.

I know that may sound flippant, but it is an accurate description.  Scooby Doo loved to be around Fred, Daphne, Shaggy, and Velma, and it is clear Jacqueline loves to be around her family.  I no longer have an autistic child who wants to be alone.  She always wants to be with us.  And somebody is definitely home.

On New Year’s Eve we had a family gathering of about ten people at our house.  Let me say that again.  ON NEW YEAR’S EVE WE HAD A FAMILY GATHERING OF ABOUT TEN PEOPLE AT OUR HOUSE!  And Jacqueline was fine with it, usually heading towards the noisiest part of the party!  She was tired out by around nine-thirty, took my hand, and led me to her room. 

I wrapped her in her favorite snowman blanket, put her in bed, laid down next to her, and told her that there was never a daughter in all of recorded history who was more loved by her dad.  It’s the usual thing I say to her at night and as usual she laughed and cuddled closer, letting me know that even with everything going on in her head that I didn’t know, she understood. 

After a few minutes she was asleep.  I could only marvel at the ease with which she went down, recalling the years she stayed up until three or four in the morning.  We don’t have those nights any more.  That’s gone along with the biting, the appearance of ill health, and the constant diarrhea.

When I went back out to the party I recalled my doubt of Christmas Eve.  I could never have imagined I’d refer to my daughter one day as Scooby Doo, but it’s better than a wild animal.  And the Mystery, Inc. gang of my lovely wife and I, her doctors, researchers, therapists, and all of the wonderful parents on-line will help us move her further along.

Maybe someday in the future she won’t just be watching those boys rip open their presents.  She’ll be joining them.

Kent Heckenlively is Legal Editor for Age of Autism.

Comments

[Lisa A Jeffs mom]

Kent -
What a gift. What a blessing. Here is to Scooby doo in 2008. I cannot wait to hear about which cartoon character she graduates to next. Her future is bright. Her health is improving. That is what matters and is a true holiday miracle - thanks to your hard work. And especially to the amazing efforts of the fabulous Jacqueline aka Scooby! I am raising a glass your way as a toast to the new year!
Lisa

[Theresa Cedillo]

What a wonderful story Kent! What a perfect testament to the significance of the GI disease in our children. I'm so saddened at how much I still read from other parents that their children's doctors are still dismissing behaviors as being "in the mind" and not having anything to do with physical pain.

A big thank you also for the excellent coverage you have done/are doing on the omnibus test cases.

Best,
Theresa Cedillo

[Sonja Lopez]

Thanks Kent for your wonderful story..the best part is that things will get even better. Each holiday will be more special than the last. My daughter did not understand this holiday initially either and we could not go anywhere with her. She thought every present was for her and heaven help you if it was not for her. We just had to hide everything until Christmas morning and then have her brothers open theirs before she woke up. The last couple of years she started to understand that Santa brings everyone a gift. This year she wrote her own "wish list" and followed the "Santa Tracker" on the computer on Christmas eve...I watched in awe! She could not have been more excited Christmas morning...she was so NT in her joy that Santa had come to our home. The most amazing part to me was when the day was over. She realized the day was coming to an end and started talking about how excited she was about Christmas coming again tomorrow (I don't think it was a completely innocent statement). I explained that Christmas was over and she would have to wait until next year. She then declared that tomorrow should then be "Give Your Kid a Treat Day!" Her brothers agreed and we made Dec 26th officially a new holiday in our home. If you told me we would be creating a new holiday based on Anna's wishes three years ago I would have thought you were crazy but three years of intense bio-medical treatments allows us to celebrate Give Your Kid a Treat Day! She is my treat 365 days of the year (366 this year). Do not give up hope...happy new year everyone.

Sonja

[Dan Olmsted]

You have to wonder why the medical establishment doesn't come running to study these kinds of individual success stories, rather than persist in saying there's no evidence for biomedical treatments. Of course, there's no evidence because they don't look. Individual case studies add up to case series which add up to evidence for alternative approaches. Remember that autism was first identified in 1943 by a psychiatrist on the basis of only 11 children. Just in Kent's story and some of the comments already posted, there are enough children to warrant the attention of the American Academy of Pediatrics, for example. Can't help thinking of Bob Dylan: "Something is happening here but you don't know what it is, do you Mr. Jones?" Our "Mr. Jones" is mainstream medicine.

[donna]

Dear Ken,

I don't have an autistic child, but have an ex-husband's nephew who is autistic. I still keep in touch via some of the old family, so I can relate to the progression story, as I hear it often with Andy.

I came here because I read your latest post on meds for agressive behavior. Andy is now 15 and becoming more agressive. He's very tall and big, and backed his grandma, whom he loves, into a room when he got upset a couple of months ago. They started giving him drugs and are claiming it is working. They also transferred him to an autistic school, where I think he feels more comfortable with the kids, so I am not sure that it's not being in a new environment with new techniques or the meds.

I also teach art and we have a self contained autistic class and a self contained severe/profound class at my school. All of the kids come to art to be around the other children. Sometimes this is hard as we have some that are not happy to be there, even though I try to make them comfortable. Just coming down the hall sets a few of them off, even at lunch. I tell the other kids that they can not help it, they have a sickness, and we learn to accept them as they are, and i get down and play with Jack on the floor when I can. He's such a fun kid who loves to be on the floor and roll around.

All of that to say, thanks for the blog, and for the posts.

[Tim Kasemodel]

Kent,

I too can connect to your story with my own son. We had 28 people in a very small area at Christmas this year and it was the first year that he kept his clothes on the whole time. Like you, we see and celebbrate every small increment of improvement in our 10 year old son, still trying to find the missing peices of his individual biomedical puzzle.

The part that hit home the most is how similar our bedtime ritual is, and how similar our children's last smiles of the day affect us. Thank you for reminding me.

As for your Scooby Doo however, we have been blessed with Bamm Bamm from the Flinstones!!

Tim

[A@T]

Your story really resonated with me Ken. I love your writing. Our little guy just ran and hid last year at the holidays when family or friends came over. I spent most of my time in with him calming him trying not to get punched in the face. No interaction of any kind other than to hit. We were having hearing testing done but I knew it wasn't his hearing.
We had been watching him slip away for the past two months. You probably know how much help our pediatrician was.
Well 10 months of biomedical,occupational and speech therapy later and HE'S BACK! Not much speech yet but like your daughter he stayed out with everyone and played and interacted. He even enjoyed ripping the paper off his presents! It was the best Christmas ever! The future looks much brighter and its due the information and inspiration I got from the generation rescue site and this site.
Thanks so much.

[Kelli Ann Davis]

Okay…..I vote for a new rule!

These types of stories need to be accompanied with “Warning: Story and Mascara Don’t Mix!”

Don’t know how many times I’ve started to read something and before I realize it, the tears are flowing and I’m a wreck. NOT good when you’re trying to keep your face and emotions intact for the day :)

Kent, absolutely beautiful. Your “baby” is so blessed to have you as her dad.

I’ll never forget the first Christmas that Miles actually showed any interest in something he might like to get for a present – Woody and Buzz, the characters from Toy Story.

Needless to say, it was impossible to find them since the movie had just come out and it was a major hit – think “Tickle me Elmo” and you get the picture. We looked high, we looked low, we looked EVERYWHERE for those two guys because we were absolutely determined that they would be under our tree.

We finally found them— in a flee market – and paid a ransom to get them.

But it was worth it all just to see our boy actually enjoy a present at Christmas.

Kelli

[Twyla]

Kent -
Thank you so so much for this incredibly sweet and inspiring story. My 15-year-old son is also still quite autistic and difficult to understand when he talks, but so connected, calm, and affectionate. We have really only scratched the surface as far as biomedical treatments -- diet, supplements, enzymes. There is a lot more we could and should do -- we got on the bus late! But we feel that what we have done so far has helped him. We wish we had a time machine so that we could know what he would be like now with and without various treatments.

Aren't you glad that you did not "accept" her as a wild, unhappy, malnourished child with dark shadows under her eyes, as some of the "neurodiversity" advocates would have it! And aren't you glad that you did not listen to the many people who say that biomedical treatments have not been "proven"!

Your story reminds us that it is hard to measure the benefits of biomedical treatments. Sometimes the few studies that are done take the approach of "try one treatment and re-evaluate the child six weeks later with a standardized test". Of course the test does not reflect improvements such as being able to enjoy a noisy family gathering. It seems that most of those whose children have benefited from biomed have been in it for the long haul, with a number of different treatments. And sometimes the reward is not "recovery" but a much better quality of life - which is also so valuable.

At any rate, all discussion of science and medicine aside, I'm so happy that you and your family had a Merry Christmas and a Happy New Year. And thank you so much for sharing your story.

Twyla

[Barbie Hines]

Kent,
What a wonderful, wonderful holiday! It is many times difficult to see the gains from one year to the next...and many times difficult to appreciate those that we do see...as sometimes the 'work' required to get there just doesn't seem worth it...you give so much to all of us...I'm thrilled to hear you had such a positive holiday season...one day Jacqueline will tell you how great it was to hear how much you love her...not a doubt in my mind that she looks forward to hearing it every night...thanks for sharing...this was great!

[Mark]

Kent,
That's a wonderful story and one with which I find special connection. So many of the stories in our community are about moms and their sons and it's relatively rare to hear about other dads and daughters. But your experience is similar in many ways to mine with with my own daughter. We had a wonderful Christmas with her as well and, just so you have something to look foward to, this ws the first year when SHE was the one (not her older sister) who wanted to open up her presents first and keep on opening LOTS of them. What a huge change from a time when she didn't seem to understand the whole idea of presents and receiving (not to mention giving) gifts! But the happy, connected, "Scooby Doo", persona is one I can recognize in my home also. And boy that's a huge improvement from where started.

It makes you wonder when people question the reality of GI disease and the promise of biomedical treatment what planet they're really on. We have sick, not defective, children and we need to help them recover from whatever happened to them. Why is that so difficult for the "experts" to grasp?
Mark