by Mary E. Ulrich | Nov 12, 2024
Celebrating St. Nick and Two Special Sons
“The stockings were hung by the chimney with care, in hope that St. Nicholas soon would be there.”
Family Traditions:
Because of our German heritage, St. Nicholas’ Feast day on Dec. 6th was the start of the Christmas season. The tradition of putting out our socks (or shoes) was always great fun.
Aaron, our son with the label of autism, and Tommy, our son with the label of normal are now 36 and 35 years old. Last post I wrote about how our holiday celebrations are evolving: St. Nick meets Disney Princesses.
Old Traditions
The first year we were married, my mother-in-law Jean, hand-made Christmas stockings for our mantle. Of course, we were living in a small apartment with no fireplace or mantle, but it began a family tradition. You know this was a long time ago because while Tom’s sock was a typical crew man-sock, mine was shaped like silk hose plus garter. (Do they even make those anymore?)
To personalize the stockings, Jean lovingly sewed small schoolhouses on both of our stockings because we were teachers, adding a felt wedding ring on mine and a felt set of golf clubs on Tom’s. When I was pregnant, she made an “Our Grandbaby” sock for Aaron who was going to be born in December. Later I store-bought some Christmas stockings for both my sons but glued and sewed some Christmasy trim on the socks.
Now a generation later, I captured our family’s own Norman Rockwell moment—Isabella pointing to the “Our Grandbaby” stocking on our mantle.
Making New Family Traditions
Lots of families put up Christmas stockings, some find stockings that are personalized with each person’s name, or hobbies, or interests like socks for dog lovers, Barbie dolls, sports fans, or ….
But, our family made the old tradition our own by adding a token of some special moment each year on St. Nick’s Feastday.
Adding a Memory a Year
Throughout each year, Tom and I look for small tokens and give them to each other on St. Nick’s Day.
Vacations and trips were easy. There were always ready-made patches, pins, buttons we could pick up at souvenir shops. Scouts, school events, sporting ribbons and awards also were small and could be easily attached to the socks. We even added some mementos inside the socks, like Tommy’s business cards for each new job and Aaron’s first pay check. Now the front, back and inside of the socks carry magic moments to remember.
Our socks have become treasured scrapbooks of our lives.
Tommy’s Christmas Sock 35 Years
Aaron’s Christmas Sock 36 Years
What do you think? Does this tradition meet the test of inclusion+ normalization? Are Aaron and Tommy’s socks alike? Age-appropriate? Do these socks also celebrate their individual gifts and interests?
You can see Aaron’s Trolley Bus pin from our trips to the Smokies, the pin from Carlsbad Bat Cave, his school bus and Lakota Pin, his prom key chain, his Boy Scout patch from Woodland Trails, a horse pin from Cincinnati Riding for the Handicapped, National Park patches where he hiked with our family…
Tommy has Boy Scout pins, school patches from the cross-country team, buttons of him looking fierce in his junior high wrestling uniform. Tommy also hiked the same easy trails in the National Parks but those patches were not the same accomplishment they were for Aaron. Tommy was proud of his week in Philmont and the more difficult mountain hikes on the Appalachian Trail with his dad…
So both Aaron and Tommy had hiking patches. The difference was the intensity, duration and difficulty of the trails.
Both were proud accomplishments.
Transition
Tommy’s wife, Ana, bought Christmas stockings for their first Christmas together. Each year I give them some token to add to their sock. This year, Ana became a United States Citizen. After the ceremony the Daughters of the American Revolution passed out little flag pins. I asked for an extra one, planning to add it to her sock.
Aaron just moved into his new house, I have stockings ready for his first house decorating party, he will get a house key on his sock.
And so the tradition continues:
“The stockings were hung by the chimney with care, in hope that St. Nicholas soon would be there.” (Night before Christmas)
Wishing you many happy memories this holiday season.
Keep Climbing: Onward and Upward
Best,
Mary
Comments
I hope you’ll share some of your family’s holiday celebrations. Is this an idea your family can adapt? Does your family celebrate St. Nick’s or have some unique tradition?
Other stories you might enjoy:
Tale of Two Brothers: Sibs of People with Disabilities
Circles of Life: Family Reunions
by Mary E. Ulrich | Nov 8, 2024
Twas the Night Before Christmas
“Toyland, Toyland, magical girl and boy land. Once you cross its borders, you can never return again.” (Babes in Toyland)
There’s No Santa
Aaron and Tommy got off the school bus and our world changed.
Tommy walked in the front door, threw his backpack in the corner, and announced “There’s no Santa Claus.” Apparently, Billy and Josh minced no words on the bus ride home. And, they were third graders who knew these things.
Aaron, my son with the label of autism, went straight to the fridge.
But what is a mother to do?
I got Aaron settled with a snack and his music and then sat next to Tommy on the couch. We both were facing the Christmas tree and feeling pretty glum when he crawled into my lap. That action alone choked me with tears. Tommy was seven years old and seldom let me hold him on my lap anymore–yet another reminder my baby was growing up.
His happy world was just turned upside-down.
Like all parents, I knew this moment would come. And, I wanted to send coal to Billy and Josh for ruining the fun.
I knew this was one of those rite-of-passages, a transformational moment in his young life–but darn. It seemed just yesterday he was three and running down the steps on Christmas morning, diving into the presents from Santa–darn, darn.
For a long time, we watched the reflection of the lights on the tree ornaments and didn’t say anything.
It was a treasured moment but I was desperately trying to think of how to keep the magic. How could I patch up the hole of a Santa that no longer was real?
Sure we’ve had some close calls, i.e. St. Nick and the Batman socks. But this time, there was no going back.
Tommy finally started talking and asked some questions. He said he had suspicions because the whole Santa-goes-around-the-world-in-one-night is a little hard to believe. But, but, but.
There were the things he said: “So there’s no Easter Bunny or Tooth Fairy…?” “Was God real?”
And the things he didn’t say: “Did all adults lie, trick kids, and play games with them?” “Who could he now trust?”
I tried to put myself into his world and think of ways he might understand. My explanation was that Santa was a make-believe superhero bombed. Later, I could talk about Jesus and the gifts of the Magi, but that seemed abstract for the current moment.
Changing Roles
I’m not sure what inspired me, but as Tommy sat in my arms with his chin on his chest, I suggested Santa was a tradition about giving.
“The Santa tradition” was a fun way for everyone to be an actor in a giant real-life magic play. It didn’t matter your age, it was about finding someone who needed cheering up, or needed help and giving it to them.
I told him little kids didn’t understand this, but big kids like him now got to be part of the fun by becoming Secret Santa to others. This seemed to make sense to Tommy.
Okay, who could we surprise? Who needed some Christmas cheer?
Tommy’s grandparents had just separated after a long and unhappy marriage. Grandpa had moved into a basement apartment in a not-so-great neighborhood and told the family, “This year I’m keeping it simple and not putting up a Christmas tree.”
So that minute, Tommy started to plan a Christmas makeover for Grandpa’s apartment. Tommy decided to become a Secret Santa.
Secret Santa
For the next few days, Tommy spent every minute making decorations, planning how to sneak into Grandpa’s apartment, and going shopping for supplies and a small tree…
He decided we needed cookies and put me and Aaron to work.
Age-Appropriate
Aaron was nine years old. If Tommy (two years younger) no longer believed in Santa, then it was no longer age-appropriate for Aaron to believe in Santa either. Tommy was always my measure of “normalization” for Aaron.
I know some parents who, when they are told their child has severe intellectual disabilities or Down syndrome or…console themselves, “Well, at least they will always believe in Santa Claus.”
I know parents, special needs charity groups, care providers, and teachers who take adults with disabilities to sit on Santa’s lap at the mall. In groups. UGH!
I know some adults with disabilities who have flat-out refused to go saying it embarrassed them. I know others who do it just to please others. I know some adults with disabilities who just haven’t had the guidance to know better.
The RULE for age-appropriate and normalization is: “Would a person without a disability do this?” “Will this activity add or subtract to a person’s positive image in the community?”
In this case, an adult with a disability sitting on Santa’s lap in the mall makes them seem like an “eternal child” not an adult who will live and work as a contributing member of the community.
This is a difficult concept for a lot of people. But this was the right move for Aaron and our family.
Grandpa’s Surprise
On Christmas Eve Tommy, Aaron, Tom, and I got the key to Grandpa’s apartment and put on our red Santa hats. In under an hour, we decorated the tree, put holiday towels in the bathroom and kitchen, added colorful plants and pillows to his living room, and his favorite snacks in the fridge. Tommy posted his drawings all over the apartment with a note next to a plate of sugar cookies:
Dear Al,
I heard you were a good boy this year.
Happy Christmas.
Love,
Secret Santa
Babes in Toyland
Tommy glowed as he locked Grandpa’s door. As we got into the sleigh (er, car) we giggled, reviewed our Christmas caper, sang carols, and drove out of sight.
When we stopped for burgers and fries (even Secret Santas have to eat) Tommy decided to continue wearing his Santa hat. Aaron–not so much. But my babes had transformed.
There was still Santa and giving and Christmas. But they were no longer the “Babes in Toyland.”
From now on, Mom’s IEP for the holidays would have to include our new roles as Secret Santas.
Over the next years, more innocence would be lost. There would be new lessons and transformations–but that is all part of growing and learning. It is all part of the magic of being a child. Being a parent. And, all part of the Santa Tradition.
Keep Climbing: Onward and Upward
All my best wishes. Ho-HO-HO. Have some fun this holiday and we’ll see you next year.
Mary
Share your Santa story:
How did you find out about Santa Claus? What are some of the ways you continue the tradition of giving? Any Secret Santa stories? Any thoughts on normalization and age-appropriate?
by Mary E. Ulrich | Nov 5, 2024
Squanto helps the Pilgrims
Thanksgiving Week: Day 1
I love the story of Thanksgiving. It is a story of inclusion (click here) and interdependence.
A group of pioneer families risk it all and travel to a strange land. They gratefully accept the help of the Native Americans who look different, speak a different language, have different cultural and religious beliefs. At first they are fearful of the differences, eventually they peacefully trade, share and learn from each other. The Native Americans welcome them into this new people and environment. But the Native Americans save the pilgrims from starvation (yea, corn, pumpkins, turkeys…) and disease (yea, the cranberry). Both groups still value their own cultural beliefs and traditions, but as neighbors they become an interdependent community which shares the hard work and sacrifice. Then, after a successful harvest, they do what every culture since the beginning of time does, they are thankful and celebrate.
As an early childhood teacher and special education professional I looked for ways to teach about cooperation, collaboration, and community. I looked for ways to include my students with special needs into the “normalized” (click here) holiday school programs and activities. I looked for ways to differentiate the curriculum so even the students with the most severe disabilities could partially participate.
Inclusion success stories for ALL children:
White Gifts for the Food Bank:
The entire school sponsored a “white gift” program for Thanksgiving. Each child brought in a non-perishable food item for the local food bank. The children decorated and wrapped the gifts in white tissue paper and put them into donated laundry baskets to distribute.
Thanksgiving Day Program:
I paraphrased and adapted the songs and dances so everyone could participate. We used the songs below in both large whole school programs and our individual class programs.
Bringing in the Community:
These were always crowd favorites. We would sing the songs, have someone dress up like a turkey and strut around. (One time it was the principal, one time a favorite music/gym teacher, sometimes a parent or a student from the high school drama club.) The turkey also lead the rhythm band for a couple songs. When we had a music teacher, she taught the rhythm band, after the cutbacks the teacher did it.
Each student made a picture for their families. If they were able, they wrote and read a sentence of what they were thankful for to the group. If the student couldn’t read, write or talk, they had a picture or the actual object they were thankful for (A picture of their family or a grandparent, a flower…) They might use a tape recorder, or ask their friends to say it with them.
For the grand finale, the class would line-dance to the traditional music of Turkey in the Straw and Old Joe Clark (the gym teacher helped teach the dances).
Finally, we ask the parents, brothers – sisters to join in for the Turkey in the Straw square and Old Joe Clark square dance classics.
The students created and colored/painted the programs, created unique tickets if we had limited seating, and they collected the tickets at the door. The words to all the songs were in the program so the children and parents could read and sing them together at home.
Refreshments:
The day before the program we had everyone bring in a piece of fruit for each person who was coming, the class made fruit salad, corn bread and cookies for the refreshments. Extra parents volunteered the day we made the fruit salad, corn bread and cookies. We had about 6 different kinds of fruit and vegetable peelers. We set up “stations” with a parent as supervisor of each station. Everyone participated, or partially participated according to their abilities.
Disabilities were not the issue, it was how can this person participate.
Decorations:
The students decorated the room and bulletin boards. We made several large murals of fruit cornacopeia, or a farm or grocery fruit and vegetable stand, or garden….
During our group story time, we used poster board to plan what we would do, and who would be responsible. We divided up the chores. The children chose how they wanted to do it. We usually combined the farm,Thanksgiving, food and/or autumn thematic units so the bulletin boards and room were decorated at least a week ahead of time. All learning activities focused on the thematic unit, were tied to standardized goals and IEP goals.
Children Giving the Tour:
Before the program, the students gave their parents and guests a tour of the classroom explaining what we were doing, what they were learning.
After the program, the parents got to take all their child’s work home to show grandma and grandpa or other friends on Thanksgiving day.
On Thanksgiving Day
Many families told us the whole family sang the songs and some used the “On Thanksgiving” song as part of the grace at Thanksgiving dinner. It really was a nice way of bringing the families into our program and letting the children be the experts and teach the songs, games to their families.
SONGS:
Ole Mr. Turkey
Who’s that struttin’ round lookin’ mighty perky?
Looks like it might be old Mister Turkey.
Strut Mr. Turkey that’s a fancy way to walk
Strut Mr. Turkey that’s a fancy way to walk.
Gobble, Gobble, Gobble
I’m a mighty fine turkey and I sing a fine song,
GOBBLE GOBBLE GOBBLE, GOBBLE, GOBBLE, GOBBLE
I strut around the barnyard all the day long and my head goes
BOBBLE BOBBLE BOBBLE.
TUNE: FRIERE JACQUES – Round
(In our school program, I took a song the children knew, rewrote the words, and chose one child to be the “conductor” for each part of the round. Another time in a whole school program, three different classes each sang a different part of the round.)
On Thanksgiving, on Thanksgiving
We are glad, we are glad.
For all the special blessings, all the special blessings
That we have, that we have.
(repeat 3 times)
TUNE: Turkey in the Straw
(I paraphrased the words so we could act it out.)
Oh, a turkey is a bird, just as proud as can be.
He struts around with his tail in the breeze.
He makes gobble noises at everyone he sees.
But thanksgiving is coming, and that’s not make-believe!
RUN TURKEY, HIDE TURKEY
Turkey in the straw, turkey in the hay,
Where oh where will the turkey be
When the table is set Thanksgiving Day? (rub tummy)
In Winter
(Transition verse- putting on coats, getting in line….)
In winter when it’s cold and snows
I have to wear a lot of clothes.
If only I were like a bear
I wouldn’t have all this to wear.
Whatever weather she is in,
She grows her coat right on her skin.
Comments:
What are some of your memories? How did the teacher include ALL students, including the students with disabilities in their activities? What were some of the lessons of that first Thanksgiving that apply to building community and celebrating diversity?
Keep Climbing: Onward and Upward
All my best,
Mary
by Mary E. Ulrich | Nov 3, 2024
This article is dedicated to Dr. Lou Brown, from the University of Wisconsin–Madison who died in 2021.
He taught us about “ecological inventories,” “Life space inventories,” “developmental twins,” “Pre- means never,” “functional curriculum” and testified in our court case that anything in the segregated handicapped-only school for people with severe disabilities could be portable and done in a public school. He made all the difference in our lives and helped change special education. He also told us to not let them teach our kids “dumb stuff”.
Aaron 3 yrs. old. Isn’t this cute, I’ll save it forever.
Hand-Print Turkeys
The first time Aaron brought home a hand-print turkey he was 3 years old and I thought it was adorable.
HOWEVER
When Aaron was 25 years old and brought home the same hand-print turkey, I was livid.
Aaron 25 years old. Kill the Turkey!
What’s the difference? Same kid, same activity. Why is one turkey a treasure, another only fit for the garbage?
The difference is the educational and philosophical debate between “developmentally age-appropriate” and “chronologically age-appropriate” activities for people with autism and developmental disabilities.
In a previous post, I introduced Dr. Lou Brown’s ecological assessment tool the “Life Space Analysis” (click here) This planning tool for people with disabilities helps identify the when, where, who and what fills a person’s day and gives clues on a person’s quality of life–though this tool can be useful for all of us.
1970s: The Birth of Special Education
Back in the 70s when IDEA was passed and people with disabilities first got the right to go to public school, everyone was trying to figure out how people with disabilities learned? What were the appropriate activities and curriculum? If you want more information about this time period click here: Parallels in Time II.”
Dr. Lou Brown and his colleagues found adolescents and adults across the country playing with infant toys. The “what” in their Life Space Analysis consisted of meaningless activities repeated every day like coloring, stacking blocks, putting colored rings on tubes, playing with wooden puzzles, and generally keeping Fisher-Price in business. “Pre Means Never” is a short video with the main idea as only Lou can tell it.
The rationale was “these students were eternal children”. It didn’t make any difference what they did. There were no expectations. They had low IQs and were functioning at a preschool or early childhood developmental level. So teachers used materials and activities matching the student’s developmental levels. For example: If a person had an IQ of 50 and a developmental age of 5.2 (6 years and 2 months), then the person with the disability should do activities that matched what a normal 5.2 month old child would do. It didn’t matter if the “child” was actually 19 or 35, or 70 in chronological years.
2010: Adult Services
I have to admit, I thought the idea of developmental age was long dead. Aaron went to public school and had plans for his future as an adult (click here). He had a functional community-based curriculum, he had a transition plan, and he had work experience. Plus, the research in the whole field of special education and adult services, strongly supports the idea of chronologically age-appropriate activities.
So, again: What’s the Problem?
In my recent round of looking at adult daycare for people with disabilities and the elderly, I have been shocked out of my mind to find rooms with Fisher-Price toys. I know the toys are indestructible, but come on. They are NOT AGE-Appropriate! If the toy package says ages 3-6, then if you are over 6 years old, it is not age-appropriate.
Schools vs. Adult Day Care
The difference between best practices in the schools and best practices in adult services is the fact that the staff and teachers are licensed. They have the training and have studied the research literature about best practices. They have done student teaching and got first-hand experiences under mentor teachers.
The people who run and work in the adult day care systems are lovely people who have high school diplomas (or GEDs) and because the job pays little more than minimum wage, they get no in-service, no vision of what CAN happen. They have the reality of too many people with disabilities, not enough help, and no training. So making preschool turkeys, or paper plate pilgrims make sense to them. The materials are cheap and the activity matches their developmental ages.
Thankful?
Being Thankful
I am thankful Aaron has someplace to go during the day. (Some states have nothing and the people sit at home.)
I am thankful these kind people don’t abuse and hurt Aaron.
I am thankful they take him to the bathroom, wipe up his messes, help him eat his lunch, and do their best.
But, they send home a paper plate bunny, toilet paper firecracker, macaroni Santa… And I am not thankful.
I don’t have an answer. I have tried to send in more age-appropriate materials and resources. I have tried to show alternative activities. And they are not thankful.
Comments:
What do you think? Is my age-appropriate rant just silly? What do you think I should do the next time Aaron brings home a preschool craft? Do you think the types of activities make a difference to people with disabilities?
If this makes sense and you want to spread the word, please retweet or link to Facebook. We have a whole lot of people to reach before the Christmas and holiday crafts begin.
I would be thankful.
Keep Climbing: Onward and Upward
All my best,
Mary
Brown, L., Branston, M., Hamre Nietupski, S., Pumpian, I., Certo, N. & Gruenewald, L. (1979). A Strategy for Developing Chronological Age Appropriate and Functional Curricular Content For Severely Handicapped Adolescents and Young Adults. Journal of Special Education, 13(1), 81 – 90.
