The summer of the soul

I think this photo of me was made on Christmas Eve, 1959.

I think this photo of me was made on Christmas Eve, 1959.

“A part of childhood we’ll always remember
It is the summer of the soul in December…”
Paul Williams, from the song “It Feels Like Christmas”

There’s a persistent misunderstanding that adults with autism or intellectual disabilities remain children all of their lives.  This is a convenient but often demeaning illusion for those who have a hard time seeing them as fellow adults; as peers who happen to have disabilities.

In some ways, it’s an easy mistake to make.  Many adults with developmental disabilities lack the normal inhibitions about showing emotion. This can be a blessing as well as a curse, and nowhere is it more of a blessing than at Christmas.  The childlike joy Matt has in all the festivities of Christmas, and especially in the music, is a welcome adornment to the season in our home.  I feel such joy at having a companion who is not only filled with the same enthusiasm for the holiday as I am, but who is also unafraid to show it.  Delight is much more fun when shared.

Yesterday Matt and I enjoyed listening to the music from one of our favorite versions of Dickens’ classic story, The Muppet Christmas Carol.  As with so much of what is crafted by talented artists who work with children in mind, it would be a mistake to underestimate the sophistication of such offerings. The offbeat humor and exceptional performance of Michael Caine would make the movie worth seeing even without the music, but the Paul Williams songs are unforgettably wonderful.  Almost every line of every song could be a theme for a blog post.

I hope you are able to enjoy the holiday season with the heart of a child,  along with the deeper appreciation, and responsibility, that goes with being an adult.  Let’s all bask in the glow of this summer of the soul, and give the children in our lives something warm to remember for years to come.

One year ago today

You have to be a child

37 Comments

  1. The image in this photo personifies the personhood (I mean no play on words) of my little sister. Thank you for letting me see this photo, for the first time in over forty years!

    • I’m glad you like it! I can’t say I remember when it was taken, but I have a vague memory of the toy I’m holding.

  2. merry

    Julia, good morning. what a delightful photo of you.
    My cousin Danny was mentally challenged and enjoyed music.
    Keeping you, Matt and Jeff in prayer as you enjoy the beautiful sights and sounds of Christmas.

    • Merry, isn’t it wonderful how music is truly such a universal language and reaches so many people regardless of their verbal ability or other differences? Thanks so much for your prayers, we are home tonight and now it’s “catch-up” time – you don’t want to see the gifts to be wrapped, wrapping paper, ribbons etc. strewn all over my house! A lovely kind of mess, though. 🙂

  3. Rene

    A couple of years ago, we saw 5 or 6 different versions of “A Christmas Carol” (including my favorite, the Dr. Who version) in the weeks leading up to Christmas. I saw the Muppet version for the first time then; I was surprised at how true to the story it was, and how much I cried.

    • Yes Rene, it’s amazing how the different versions all seem to capture the story so well even with their differences? I just love the Dr. Seuss “Who” version. Have you ever seen the Mr. Magoo Christmas Carol? It’s a cartoon and very old – but like the Muppet Christmas Carol, it has lovely music and is really touching. I also liked the Henry Winkler version called “American Christmas Carol.” We have seen several stage productions including the hilarious Hawaiian Christmas Carol, but it wouldn’t be all that funny if we had not lived there more than two years before we saw it – there’s a lot of local humor in it.

  4. MaryAnn

    A beautiful child grew into a beautiful woman: inside & out!!!

    • Thank you Mary Ann, that is so sweet of you!

  5. Lovely and so true, too. Hugs to you and yours.

    • Thanks Alys, I have been thinking of you and missing my visits to your online “nirvana” in my adopted home state! I hope that I can catch up after the holidays are over. Thanks for being here with us. We are home now – Hooray!

      • That is such a lovely thing to say, Julia.

        I’m happy to hear you are back home. That alone is such a relief I’m sure.

        Hugs to you xox

        • Alys, YES, being back home is wonderful. Although I could take photos of my entire home (here and in York too) as a cautionary “this could happen to YOU!” episode on your organizing blog!! 🙂 Hmmm, maybe a makeover episode later… 🙂 Thanks for being with us. Hugs back to you too. I love cyber hugs.

          • I wish I lived in the neighborhood, so I could stop by and help you de-clutter a space to help you feel more at peace with it. It seems to weigh on you. I’ve been working with a joyous and appreciative client these past few weeks who said she ‘feels unlocked’ and is really enjoying the process and results of our sessions.

            Perhaps you can find an organizer in your area to help you. It would be a great gift to yourself. You can Google NAPO (National Association of Professional Organizers) for listings of organizers nearby. Good luck.

            xox

            • Hi Alys, what a sweet thought. Right now my biggest challenge is time. I know I will actually enjoy the clearing out and organizing once the busyness is past. After Christmas I always have a big rush of “time to clean up and clear out” adrenaline, so I hope it won’t fail me this year! I did get the townhome looking fairly good before we left for York, so that was a BIG relief — not perfect, but getting there! Thanks for being here!

              • It must be dizzying taking care of two homes. I can’t imagine. That said, lovely to have two places.

                I too get the clean up and clear out bug after the holidays. It’s a good feeling.

                • Alys, it can be confusing having two homes, but as you say it’s also nice, especially since they are in two almost opposite type locations. I love being able to walk to shopping, post office and restaurants at our Alexandria home, but I also love the slower pace of York County. I do hope that this year my “clearing out bug” will be more determined and focused. It is a very rewarding thing to re-claim closet and cabinet space!

                  • It is rewarding, isn’t it? I think a lot of times things make it into our homes, and we forget to take the time to edit and reduce back to the space at hand. I’ll be your cheerleader so if you get going and feel stuck, please check in.

                    I hope you’re having a pleasant weekend leading up to the holidays. xox

                    • Thanks Aly! Thank you for being my cheerleader in this massive but long overdue determination to REALLY make some changes this year. I think I’ve finally reached the point where I won’t be able to stand NOT doing it, if I can just make the time. I will keep you posted! 🙂

                    • 😄

  6. It is after 3:00 eastern time. I hope your not yet being on your blog site means Jeff is leaving the hospital? Hoping and Praying!

    • Eric, we are home and Jeff is doing pretty well. The pathology results were mostly good. Liver 100% cancer free; even the suspicious nodules that were removed in the extensive (1/3 of the liver) resection were benign with no evidence of malignancy. Remarkable considering what the PET scan showed. The primary tumor in the colon was quite malignant and still active, but they believe they got it all. We heard the words “cancer free” twice today, once from the liver surgeon, and once from the colorectal surgeon – music to our ears! Though there will be more chemotherapy required (due to the staging of the primary that was removed, and the possibility of its having thrown off malignant cells not yet in evidence) Jeff is in a considerably better spot than he was in at this time last year, when they were doubtful he would ever even be considered for surgery. We are so thankful to God and to all who have been supporting us with kind thoughts, prayers and good wishes. Jeff will be watched closely for the rest of his life, but it now looks much more likely that will be a significantly longer time than the original prognosis suggested. What a wonderful Christmas gift for us!

  7. Raynard

    Julia while I didn’t watch frosty the snowman or Rudolph the red nose reindeer yet,we are suppose to get more snow tomorrow. Then if that groundhog of a weatherman is kinda sorta right Friday might get into the 50’s.Maybe life is like a box of chocolates for me I just pick out the ones I like not bothering to taste the others.(what’s that good chocolate that has a picture of what’s sitting where in the box? If only people stop acting like the mean lady in the church who looks like she eat some lemons or prunes by the look on her face.. Lol be blessed

    • Raynard, I have been hearing about the snow in the NE and was glad it did not hit us. Wow is that crazy or what, snow one week and 50 degrees the next. I like it though, since I can’t tolerate too much cold. I have to confess I’ve spent my share of time looking like the mean lady – Miss Viola Swamp is a beloved character to me! I actually do eat lemons sometimes, for real. But hopefully I don’t go around looking like I do, at least not most of the time. I think the chocolates with the photos are Godiva, probably some other nice brands do too. I like truffles the best, and the dark chocolate ones by Lindt are hard to beat!

  8. Debbie

    I am so glad you are home and whatever is ahead try to live in the moment , your blog has taught me to strive for that. Your family will be in my prayers this holiday season.

    • Thanks so much Debbie, I feel so happy when someone tells me that the blog has helped them. We so appreciate your prayers – I hope you will join us in giving thanks that they are being answered! Happy holidays to you and your loved ones!

  9. Sherrie Kennedy

    Julia, I’m so happy to hear you guys are home! I think of y’all often! I hope you all have a great Christmas!

    • Thank you Sherrie! We appreciate your thoughts and prayers – I hope you and all the family have a great Christmas too!

  10. What a beautiful baby girl!!! Thanks for sharing the photo. Like you and Matt I love the Muppet Christmas Carol but I also love their singing of Christmas carols. One of the lines I love that is not part of the movie is the Muppets singing, “We wish you a Merry Christmas”. When they come to the line, “Now bring us some figgy pudding” you hear Miss Piggy say, with a very upset tone of voice, “PIGGY PUDDING!!” and then Gonzo explains, “It’s FIGGY pudding, it’s made with figs!” To which she answers, “Oh yes” and then you hear him say, “…and bacon.” It is hilarious. Enjoy all the season has to offer my friend. Love to the boys. Can’t wait to hear the news from today. I love you.

    • Amy, we have that song AND CD, and listen to it every year. Miss Piggy is one of the all time greats, isn’t she? The Muppet 3D Adventure was Jeff’s favorite thing in all Disney World when we went there 20 years ago, and to me, Miss Piggy made the show. I wish she could have tea with you, me, and HM. Can you just imagine those two together? 🙂 Love you.

      • What a lovely day that would be. I will go there often in my mind. When I was little we always watched the “Wonderful World of Disney” on Sunday nights. After Stephen and I got married the Muppet show was popular and we always looked forward to it. Neither show was still a weekly by the time our children came along. We have shared lots of CDs and fun movies but it somehow was never the same. I loved the opening of the Wonderful World. It was like magic. The Muppet show theme song was/is hilarious. It is all captured and can be watched over and over now so that is a great thing. See you in the tea room. 🙂

        • Amy, those fireworks over Cinderella’s castle are a magical sight that only those of us “of a certain age” can appreciate. At the end of the magnificent “Soaring over California” ride, it’s so fabulous to see them from the air! See you in the tea room – I’m out of HM’s Fortnum & Mason tea, but perhaps we can make do with some PG Tips? 🙂

  11. I see no new blog entry for today (Dec. 17, 2013). But we are rejoicing over Jeff’s progress, and will continue in both thanksgiving and supplications.

    • Eric, not sure why you didn’t get the blog on time; I checked and it published supposedly at the usual hour. In any case, maybe you can see it now? Let me know if you cannot. Thanks so much for the ongoing prayers.

  12. Michael

    Have you seen Black Adder Christmas carol? It is like the only one on Netflix.

    • Believe it or not, I have NEVER seen that one, though I’ve been meaning to for years. If they are even half as good as Monty Python, I will watch them again and again. BTW we also love the Bill Murray movie “Scrooged” and a lot of lines from it have become standards in our home. The one I like best is: “Now, I’m going to have to KILL all of you.” 🙂 Drew loves the Richard Burton imitations.

  13. That is a dear photo of you from the past. With light Christmas lights slightly out of focus in the background and you looking at someone other than the photo taker, it looks like you’re daydreaming of something magical.

    It’s extra special to have Matt to share the magic of the season with, who’s uninhibited enough to belt out Christmas tunes with you or watch a favourite Christmas movie from the umpteenth time. I wish I could have you guys over here to do something fun.

    The muppets are awesome! My personal favourite is ‘A Christmas Story’. The one with Ralphie and his Red Ryder BB Gun and his dads Leg Lamp. I think I’ve seen it at least a dozen times. It’s just the two of us Christmas morning and there’s no rip and tearing into presents like when we were kids, but we still enjoy surprising each other and lazing around in our jambes late into the morning. Up North here, it’s often the only thing that gets you through winter, the Holiday Season, LOL Otherwise it’d just be cold and dark, eeeeeck.

    • I probably was daydreaming something magical, since I seem to have spent more than half my childhood in that state. Matt’s smile does light up our holidays. Would you believe I have never, ever seen A Christmas Story? People are shocked when I tell them that. That’s what happens when Christmas is all Dickens all the time! Actually, I also love It’s a Wonderful Life and some of the other famous ones. I will just have to make it a point to watch that one so I won’t be an American cultural ignoramus. I knew I was truly an adult when the best part of Christmas was lazing around in the robe and slippers. Well, that and the cinnamon rolls, something we save for a special Christmas treat. C. S. Lewis was right when he described the horrible witches spell as “always winter and never Christmas.” It’s so fortunate to have the holiday season to inject a little bit of festivity into what could be a very depressing time.

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