Christmas with Autism

December 20, 2009 | 19 comments
By
Decorating the Tree 2008

Decorating the Tree 2008

In April of 2008, our son Samuel was diagnosed with autism. He was four-years-old at the time, so by that point it was not a surprise. He had begun to noticeably regress at about three-and-a-half: his already slow language development halted, he stopped smiling, and, disturbingly, did not like to be held and pushed us away when we tried to hold him.  We had already had him assessed the previous year as having a developmental delay as well as Sensory Processing Disorder (SPD). Nevertheless, the autism diagnosis came with a certain finality that was devastating.

After initial weeks of grief and a certain amount of denial, we at moved from management mode to active intervention. We had already enrolled him in a special education preschool, started him with private occupational therapy, and started some in-home therapy. Elaine became a fearsome advocate for our son, taking on insurance companies and working actively with the schools and therapists. I have always been a hands-on Dad, but now, working with Elaine, a host of “helpers,” and the Lord, we have seen miracles with our boy. If my guest-blogging privileges continue a little past Christmas, perhaps I will write a more lengthy post about our journey, and successes, with Samuel’s autism.

Samuel's helpers, Christmas 2008

An insert into last year's Christmas letters, thanking all the teachers, aides, therapists, and other "helpers" who worked with Samuel in 2008

But in this Christmas week, I wanted to share some specific experiences that we have had with our special needs child, first the challenges that the holiday posed and then the wonderful blessings that we have experienced together as a family.

First, a disclaimer. We learned early on that when you meet one child with autism, you have only met one child. Autism Spectrum Disorder (ASD) presents a continuum of behaviors, disabilities, challenges, and strengths. The experiences, and successes, we have had with our son are not necessarily the kinds that parents with similarly impacted autistic children may be having.

Last year was our first "successful" holiday season with Samuel, here with his sister, me, and Nana

Last year was our first "successful" holiday season with Samuel, here with his sister, me, and Nana seeing the lights at Temple Square. Note my boy's smile, one of the miracles of 2008.

Samuel started out moderately impacted but is now very high functioning indeed. He is still somewhat verbally challenged, particularly in expressive language, but he has gone from very little language to being almost at age-level (what he can say and what he does say are two different issues). He is still socially inhibited, but is incredibly warm and affectionate with our family and with a slightly larger circle of familiar people. Promising is that he wants to be with and like other children. Still, changes in routine and patterns are very disturbing to him, and his lingering SPD issues make loud noises—such as singing in the ward Christmas program or even weekly family home evenings—upsetting to him (now read into this the fact that his father is one of the stronger baritones in the Tabernacle Choir and loves to sing more than almost anything!).

These factors combined to make his third and fourth Christmases almost complete disasters, for reasons that we did not totally understand at the time. He wanted nothing to do with our daily December Christmas devotionals and certainly did not want to be around for any singing. Different foods and smells at holiday time were not the source of excitement and fond associations for him in any way. They were new, different, and causes of anxiety. Our traditional Christmas Eve picnic by the tree was such a nightmare that when he was three we ended up putting him in a play pen nearby simply to keep him from running away and/or wrecking havoc. Still he cried the whole time, largely spoiling the evening, and getting him involved in our Nativity play was not really an option.

Our traditional Christmas Eve "picnic," an unsettline change in routine for Samuel

Our traditional Christmas Eve "picnic," an unsettling change in routine for Samuel

Christmas morning was, not surprisingly, a sensory overload, but we took some comfort that when he focused on a single toy he actually seemed to enjoy himself. In fact, two Christmases ago he played single-mindedly all day long, almost ignoring everyone and everything else, until he literally dropped shortly before midnight. Nevertheless, as important as Christmas traditions are to me, I was gripped by an increasing feeling of sadness. Not only was Samuel not learning the kind of things we wanted him to learn about the season, let alone enjoying it fully, his struggles were impacting the way the rest of were experiencing the holiday.

We have learned much about autism over the past two years—better, we have learned much about Samuel over this period of time. Routines and patterns are very important to him, but he can handle change if the right kind of preparation is done. He is a very visual learner, and he began to read at an early age. As a result, one of our specialists helped Elaine come up with the idea of using checklists when we mainstreamed him for kindergarten. Additionally, we purchases a large, magnetic whiteboard and divided it into columns for days and rows for mornings, afternoons, and evenings. Little signs, with both pictures and words, stood for school, speech, occupational therapy, play dates, family night, Daddy Night, and other activities. We have used that, and since then a conventional calendar, to help Sam Man know what is coming up tomorrow, the next day, the next week. Likewise sacrament meeting, which was always a trauma for Elaine (especially since I was more often than not in SLC for Choir, leaving her to handle him alone), suddenly became manageable once she learned how to help Samuel plan for each stage of the meeting and know how long each part would last.

Christmas Eve checklist

Rachel's Christmas Eve checklist for Samuel

It was our daughter, Rachel, who came up with the idea about mid-December last year to make checklists for Christmas Eve and Christmas Day. She and I produced them on the computer, complete with some rudimentary graphics, and we reviewed them with Samuel in the week leading up to Christmas. Since one of the items was the Nativity play, Samuel immediately began to ask what he was going to be in the play. Rachel came up with a simple script and practiced with him all Christmas Eve Day. When Christmas Eve finally arrived, everything went like clock work—and I really mean clock work, because for Samuel everything needs to be done just as planned!

Samuel with our Advent wreath

Samuel with our Advent wreath

But perhaps more than anything, it has been our family’s tradition of celebrating a modified version of Advent that has done more than anything to help Samuel understand what Christmas is all about and be excited for it. As we were getting our Christmas stuff out the Saturday after Thanksgiving this year (during the BYU-UofU game, in fact), Samuel lit up when he saw the wreath and the candlesticks. “Hope, Love, Joy, Peace, Christmas!” he exclaimed. “Where are the purple and pink candles?” The next day as we got ready for the First Sunday of Advent, Samuel got into our Advent Book and picked the readings for each person to deliver, including one for himself. On Friday and Saturday of each week this month, he has talked about the candle that we were going to light that Sunday.

Samuel on the Eight Night of Chanukkah

Samuel on the Eighth Night of Chanukkah. He follows along with me and can repeat the Hebrew blessing almost better than anyone else in the family!

In addition, we have a little family Christmas devotional each day in December, which consists of a story, a scripture, and a carol before family prayer. Last year we did not even dream of keeping Samuel around for the fifteen minutes “doing Christmas” took, so we read most of the stories with Rachel and then tried to call Samuel up from his computer just for the scripture and song, although most of the time he was not happy with the singing. This year, however, knowing that it was a pattern, he has stayed for the whole thing, cuddling with his mother while we read the story, (occasionally) taking a turn with the scripture, and, much to my joy, singing along with us for each carol, even relatively unfamiliar ones like “Bring a Torch, Jeanette, Isabella.” In fact, more often than not, as the evening progresses, Samuel is usually the first one to say, “We need to do Christmas,” and last night while Elaine and I were at a dinner party, he refused to go to bed before we got home because he did not want to miss our Christmas devotional. We light the Advent candles every night for our devotional, not just on Advent Sundays, and he and Rachel take turns blowing them out and opening the day’s pouch in our Advent calendar.

Samuel opening the day's pouch in our Advent Calendar after our daily December devotional

Samuel opening the day's pouch in our Advent Calendar after our daily December devotional

I concluded my “An LDS Observance of Advent” post by writing: “What started as a personally enriching practice for me and Elaine and then came to be a useful teaching device for Rachel has become a central and reassuring ritual for Samuel, helping him prepare for Christmas in more ways that I could ever have expected.” This is true, but it has also helped us, making us concentrate on the purpose and the hoped-for results of all of our Christmas-time traditions and rituals.

Elaine, Samuel, and Rachel on "Christmas Saturday," the day in December when we buy a new piece for our Nativity, go out to dinner, and then see the lights on Temple Square

Elaine, Samuel, and Rachel on "Christmas Saturday," the day in December when we buy a new piece for our Nativity, go out to dinner, and then see the lights on Temple Square

Through these traditions and routines, I have realized this year what may seem like a very simple dream for many families: every night my family sits together, reading the scriptures, singing, and praying together. As I hear my wife’s pleasing alto, my daughter’s sweet soprano, and now, at long last, my son’s precious voice singing carols of the heart, I, the strongest and most experienced singer in the family, can often barely utter a note as my throat tightens with emotion and my eyes fill with tears of joy. As we celebrate the birth of our Lord together, the spirit is not only filling my home, it is reaching my precious son in ways that I pray will make an indelible mark on his memory and soul.

19 Responses to Christmas with Autism

  1. Tatiana on December 20, 2009 at 9:08 pm

    How wonderful! Thanks for sharing that.

  2. Rosalynde Welch on December 20, 2009 at 9:19 pm

    Just beautiful, Eric, thank you for this gift. Samuel is a blessed boy to have such a supportive family and community. I’m interested in something you wrote in your Christmas letter insert (I squinted to read it all)—you mentioned constant physical affection, including holding him as he falls asleep, as a way of breaking down his emotional walls. I have no experience with autism, so I’d love to know more about this aspect of Samuel’s therapy.

  3. Stephanie on December 20, 2009 at 9:42 pm

    Thank you for sharing this. I learn so much by listening to the experiences of other parents who share it exactly like it is. I don’t want to presume to understand your experiences, but I can relate to a lot of the things you said in this post. My second son has not been diagnosed with anything in particular (other than asthma), but he has shades of a sensory disorder. His third and fourth years were particularly rough. He would start the screaming and crying as soon as he woke up and wanted this bowl in this place on the table with this spoon, etc. Every morning was a 3 hour tantrum. He gave up his nap early and wouldn’t sleep after that, but he needed down time. The only thing I could think of to do with him was to hold him around nap time every day. We would just lay on the couch with me holding him for a couple of hours until he was calm enough to handle the rest of the day. I knew school would be a tough transition because he needs his structured routine to be the same every day, and he needs to know exactly what is going to happen. He’s in 2nd grade now, and things get a little easier every year. My fourth son is showing a lot of the same tendencies (plus he didn’t look at us in the eyes until four months old, he lines up his toys instead of playing with them). He’s not autistic (according to the pediatrician, and I tend to agree because he’s social). But, I do think there is a big enough spectrum that both of these sons might lie on the very edges – not enough to require major intervention, but enough to require a lot of extra effort from mom to help them thrive.

    Sorry this is so long. I just really appreciated hearing about the things your family is doing and how they are working.

  4. Stephanie on December 20, 2009 at 9:43 pm

    Oh boy. Totally screwed up the html on that last comment.

  5. Eric Huntsman on December 20, 2009 at 9:54 pm

    “you mentioned constant physical affection, including holding him as he falls asleep, as a way of breaking down his emotional walls.”

    If I write a separate piece on our Journey with Autism, I will describe this further. Very quickly, however, it developed out of an article Elaine read describing (but not explaining) autism by noting that autistic children have all the neural pathways of typical children, but some are just frozen shut. Early intervention—esp. training and education—seem to force some of those pathways open.

    Samuel’s emotional regression was devastating for all of us, especially Elaine. In the family, I was the one that he had somewhat bonded with, and it was hard that her son would not let her really hold him or be affectionate with him. Samuel let me put him to bed each night, often waiting up till I arrived home if it was a late evening and often asking me to lie down by him (but not really touch him). As I prayed about it, I had the impression to hold him close as he fell asleep. He resisted at first, but I persisted for a couple of months. Then I began to press his cheek against mine as we fell asleep, whispering to him over and over how much I loved him. I like to think of this as “emotional early intervention,” opening up those pathways and helping him understand and accept positive feelings.

    Samuel exhibited a lot of echolalia (repeating words and phrases from videos and computer games mostly). So when we told him we loved him, he would usually repeat it back, but often mechanically in the same words, even saying “I love you, Sam!” A year and a half ago, after several months of my bedtime ritual with him, Samuel walked into the living room on Elaine’s birthday, hugged her, and without prompting said, “I love you, Momma.” Since then he has become increasingly affectionate, hugging, kissing, and telling us that he loves us.

  6. jks on December 20, 2009 at 9:56 pm

    A year ago I tried to watch old video footage of when my older son was little ad I can’t describe how depressing it was. It made me cry and feel sick inside for days. I have also been lucky with my older language disorder plus social/cognitive delayed son and how far he has come knowing that all my hard work (along with help from others) have made a difference. I thank my Heavenly Father for his help and guidance.
    So I read this and identify with it.
    The dream of simple happy family life really does take a lot of work whether you have a special needs child or not and it is wonderful when we have those moments.

  7. Kevin Barney on December 20, 2009 at 10:20 pm

    Having an autistic little brother, I very much appreciated this window into what you do with Sam at Christmas time.

  8. Rosalynde Welch on December 20, 2009 at 11:57 pm

    Most interesting, Eric, thanks for taking the time to reply. How painful that must have been for Elaine, but also what joy when he made a breakthrough. I have no doubt that your patient investment of time and love made all the difference. Merry Christmas!

  9. gst on December 21, 2009 at 12:08 am

    Eric, this was very interesting, and encouraging. I’ve recently become interested in the subject as I’ve gotten to know a student in my youth Sunday School class who has some sort of autism.

  10. m&m on December 21, 2009 at 1:37 am

    This was a beautiful post, and that comment about responding to inspiration for your son brought tears to my eyes.

    Thank you for sharing this. It’s inspiring to me to see how others deal with the physical, emotional, mental and other weakness that comes as part of the mortal journey. The specifics in my world are different, but the conviction that God is there and can and does guide is the same, and is something for which I am so deeply grateful.

  11. J. Madson on December 21, 2009 at 2:54 am

    Eric

    not much to say other than thanks for sharing. It was quite touching to hear your bed time ritual with Samuel.

  12. Kristine on December 21, 2009 at 9:03 am

    Eric, I have a son whose diagnosis is PDD-NOS (meaning, as far as we can tell, that he’s quirky and unpredictable, and medical professionals don’t really have a clue, either :)), and one of the trickiest things for me to remember is that a HUGE part of what makes the holiday fun for my other children–surprises and anticipation–are not at all pleasurable for him. A couple of things you said make it seem like you’ve done a good job of involving Rachel, but I’m wondering if you also do things for her that are different and separate from what you do for Samuel.

    And I echo everyone’s thanks for sharing this glimpse into your family’s Advent!

  13. My Autism Recovery on December 21, 2009 at 9:07 am

    I just want to second Rosalynde’s comment. He IS very lucky to have relatives who are very supportive.

  14. marta on December 21, 2009 at 9:23 am

    Thank you, Eric.

    Kristine, How old is your PDD-NOS child? Perhaps he could become your helper and be in on all the surprises. I became Santa (the easter bunny, the tooth fairy) for my whole family in 7th grade.

  15. ESO on December 21, 2009 at 10:00 am

    I get the feeling that Sam is super lucky to be in such a thoughtfully invested family; I bet every member of your family feels lucky to be in his family too. Great reading–thanks.

  16. WJ on December 21, 2009 at 1:11 pm

    Eric, one of the hardest things I’ve encountered as a parent has been learning to sacrifice my own time and interests in order to give my children the time and attention they need to fully grow and develop (still learning that fact). Reading about the monumental efforts you and Elaine have/are making to nurture Sam (and Rachel) was very inspirational. Sam is a truly fortunate boy. Congratulations on the strides you have made to date and I wish you continued success in the future. Thank you for sharing!

  17. lyle on December 22, 2009 at 11:14 am

    Eric:

    Thank you very much for sharing. Even sacrament meeting is a nightmare for our daughter Sahara (4), who is on the Autism Spectrum, for the same reasons you explained above.

    Lyle

  18. john f. on December 22, 2009 at 1:06 pm

    Lyle, maybe some of Eric’s methods here could help Sahara? So sorry to hear of her (and derivatively your) struggles with this condition.

  19. VeritasLiberat on December 23, 2009 at 3:43 pm

    I’m new here, but I’d just like to mention a great resource for those who know somebody with autism. It’s a book, “As I See It,” by Temple Grandin (a successful scientist who is herself autistic). She explains the kinds of problems those people “on the spectrum” are likely to encounter in life, and proposes some solutions — all from the point of view of an insider, someone who actually deals with those same issues herself. She also discusses areas where autistic people are likely to have talents they can use.

WELCOME

Times and Seasons is a place to gather and discuss ideas of interest to faithful Latter-day Saints.