Christmas, Pre and Post Recovery, and the Struggles of Managing Recovery
I have identical twin boys. Their world today is very different than their world was a few years ago. Pre-recovery, all they got for Christmas was books. It was all they wanted. I'll never forget their 3rd Christmas. As they came down the stairs Christmas morning, they focused on the large stacks of books. They didn't just like any books, they liked the books that were about learning to read, write, and do math. They yelled, "Books!" with excitement, and then tore through the stacks as if they were the happiest children in the world -- getting just what they wanted for Christmas.
I suppose one would be wondering, "What's so bad about that." Well, the bad news is that their world consisted of only letters and numbers. Caregivers and relatives would complain how they would not respond to their name, nor recognize them. At the store, they would point to numbers, while ignoring the toys. At home, they would sit for hours at a time, exploring books. The only attention they gave to toys, were to line them up. The only exception was electronic learning toys. They obsessed over them to such an extent that they were able to use these devices to teach themselves to read, write, and do math. They would write a sentence in perfect manuscript or incursive, such as, "I want a cookie." At first, I thought my children were just geniuses, but. . . . . even though they could write complete sentences, their speech consisted of a very small amount of words. They would approach me and say, "A cookie," or "A drink." When I asked them to say the sentence, "I want a cookie," they would cry instead. I had to admit to myself, that they, too, were part of the current autism epidemic. A local psychologist diagnosed them both with PDD, NOS.
They were 3 years and 3 months at the time recovery efforts were started. They started responding right away, but slowly. They barely made it into regular education classes. They were potty trained just a few months before it was time to start Kindergarten. After a few weeks of school, I was contacted by an Assistant Principal and informed that my children had difficulty with transitioning, and that their obsessions and meltdowns were creating doubts amongst their teachers that they would be able to continue in school. Recovery treatments were stepped up, and they were able to continue in regular education classes. Today, they are in the 2nd grade, and treated by school personnel as if they are neurotypical. Most days they do well, but there are still some meltdowns. Recovery is not absolute in my family. Those last few symptoms seem to be stubborn, fading back in from time to time. Just when you think they may be able to tolerate a reduction in recovery treatments, a symptom will flare back up. Thus, they are in managed recovery which has it's own set of stresses and uncertainties.
(Here are the boys last week in their holiday show.)
The Christmases that followed, have been very different than that pre-recovery Christmas day I described. This year, their Christmas list is full of board games, Nintendo games, and K'nex. They want Mario and Plants versus Zombies. They want to play, wrestle, and hug their siblings and relatives. They did not grow out of their symptoms, as people who are uninformed often think. It took grand efforts to get them into recovery, and it continues to take grand efforts to keep them there. The many doctors and parents who get on this Internet and explain the causes of symptoms and treatments that rebuild immune systems are who I thank. Thank you for these Christmases in recovery, and blessings to all -- that all may find comfort and healing.
Heidi Noyer, MS
Heidi Noyer received the CHOICE Award for Outstanding Mentor in 2009 for donating countless hours informing parents of the various treatment methods available that can significantly decrease disabling symptoms. Having five children with various diagnoses of ADHD, OCD, Asperger's, Bipolar, PDD, NOS, and more, she has first-hand experience in tackling challenging diagnoses.
Posted by: Laurel | February 04, 2012 at 02:04 PM
What a fabulous holiday floor show! Those boys are very talented. That's a lot of lyrics to memorize, plus the movement routine. Thanks so much for sharing.
Posted by: nhokkanen | December 27, 2011 at 12:11 AM
Tears. They are precious and this is the kind of recovery you get when you hear the truth, instead of the story of Pharma.
So many regrets.
Posted by: Kfuller Yuba City | December 25, 2011 at 05:50 PM
A grand effort to get them recover,a grand effort to keep them there from a Mother with a grand heart and mind.Thank you for sharing your story and the sweet song with us. All the very best to you and your children for 2012.
Posted by: oneVoice | December 25, 2011 at 12:07 AM
We have done everything possible to recover our family for so very many years and have not had the good fortune of recovery.Praying hard to keep faith and hope alive. May God have mercy on us all.I believe that treatment options that would truly help all already exist, but until the denial game and the money and politics surrounding disease relent, many will suffer and struggle with no end in sight.May 2012 be a year of healing and recovery for all of God's creation.
Posted by: Barbara Biegaj | December 24, 2011 at 05:35 PM
tears here! Beautiful little boys. What a blessing to see all that hard work pay off!
Posted by: Sue Cranmer | December 24, 2011 at 04:35 PM
Thank you for sharing your adorable sons with all of us. I have to say that in addition to my thoroughly enjoying their heart-warming, and well-sung performance, their collective cuteness is way off the charts.
They have accomplished so much. You must be so very proud of them.
Posted by: Not an MD | December 24, 2011 at 10:19 AM
That was a long song. It takes a lot of work to get the words down right, and then to a tune, and then the other little motions and actions that made it very entertaining.
Very Great Job!
Posted by: Benedetta | December 24, 2011 at 09:47 AM
What a Christmas Blessing! Thank you for sharing! Your children's performance left me with tears of joys. Merry Christmas and praises to God!
Posted by: Pamela | December 24, 2011 at 09:31 AM
hey these kids can really sing...wonderful! Thank you Heidi and Merry Christmas!
Posted by: Sarah | December 24, 2011 at 09:26 AM
Could any autism parent possibly watch that video with dry eyes? I couldn't.
Merry Christmas Noyer family - and everyone!
Posted by: Santa's helper | December 24, 2011 at 09:18 AM
I'm not the parent of an autistic child, and I don't celebrate Christmas, but your sons' most wonderful performance lit up my morning.
Posted by: Carolyn Gallagher | December 24, 2011 at 08:51 AM