Archive for the ‘Ulrich Family’ Category
Building Community: One Grocery Trip at a Time
With Aaron, my son with the label of autism, every trip to the grocery is an adventure.
Before we go, I usually do an ecological assessment (click here) and use some of the skills Aaron learned in his functional curriculum when he was in school.
Over the years and with lots of practice, I know what Aaron likes and dislikes. I try to make the shopping trip a good experience for both of us.
We try to go in the morning when the store isn’t crowded. We’ve developed a system where I walk in front of the cart making sure there is no person or display in the way. Aaron then follows pushing the cart with both hands on the handle.
Aaron is really good at following and knows to stop when I stop. He seldom bumps other people or the displays. This is a skill we have worked on for years and practice every week. I am really proud Aaron can do this.
We usually go to the same store.
That way Aaron is familiar with the physical space and layout. He knows the grapes and carrots are on the right front, the bread is in the right back, and after we pick up the milk and yogurt on the far left we will head to the checkout lanes. We usually only buy about ten items so the wait in line is short. We try to build a routine and structure into the experience.
We try to build a relationship with the store personnel.
This store was only a mile from where Aaron went to high school but in the suburbs we rarely see anyone we know. One of the baggers used to be in the special education program. She does a good job and always says hello. Some of the regular shoppers talk to her by name. She is one of our special ed. success stories and has been employed for over 10 years.
But I never know what’s going to happen.
Yesterday we went to the grocery near Tommy’s house because we wanted to let his dog out for him. Even though it was the same chain we always go to, the store was set up differently. STRESS.
I thought noon on a Sunday would be okay, but it was packed and everyone was in a hurry because the football game was due to begin at 1 PM and the only way to survive a football game is with lots of beer and snacks. STRESS. STRESS.
Being ready for surprises
Aaron did pretty well. We got our groceries and went to the car. I was putting the bags in the trunk when Aaron started pounding on the roof of the car next to us. He’s never done that before.
The young man was getting his two young daughters out of the passenger side. He looked up and yelled, “Hey, stop that!”
Quickly I grabbed Aaron and was about to get him into his seat when Aaron pushed me away and again pounded on the top of the car. This time the guy came over to our side of the car.
I started to apologize when the guy said, “Aaron, is that you?”
Aaron gave him a side-ways glance.
I was stunned and didn’t quite know what to say. I looked at the guy and he looked at me, and he repeated, “Is that Aaron?”
There wasn’t much room in the space between the two cars. I took a deep breath and turned Aaron toward the young man. “Aaron do you know him?”
Instead of punching Aaron, the man gave Aaron a high-five.
I fumbled out a, “How do you know Aaron?” and the young man said they went to high school together. He said he used to come into Aaron’s class and take him to the gym. He said he and Aaron used to eat lunch together.
He touched Aaron’s arm and guided him over to the other side of his car and introduced Aaron to his two children who were about 5 and 3 years old. He told them Aaron was a friend from school and then had Aaron give them each a high-five.
Aaron was strangely quiet. He patted the younger child on the head and said, “Ahh.”
I thanked the man for saying hello. He said his name was Todd and he asked a couple questions about where Aaron lived.
We both talked about how Aaron must have recognized him and since he didn’t have any words, he used the pounding on the car to get attention. We both thought that was very clever of Aaron.
Finding More than Groceries
When we worked so hard for inclusion for Aaron in the public schools, we dreamed that Aaron would have a community of people who knew and accepted him. People who could see his gifts and strengths.
Every once in a while we have a unique success story that makes all that hard work worth it.
We’ve never expected big monumental experiences. This magic moment where Todd remembers Aaron and thinks enough of him to want to introduce him to his children–that’s big enough.
I hope you will check out a couple of the other blog articles and share your thoughts.
Do you have any community experiences to share? Any magic moments?
Do you think the future will be better for adults with disabilities because of inclusion in the schools?
Keep Climbing: Onward and Upward
All the Best,
“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 refridge.
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 any more–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 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.
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 a 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.
For the next few days, Tommy spent every minute making decorations, planning how to sneak into Grandpa’s apartment, going shopping for supplies and a small tree….
He decided we needed cookies and put me and Aaron to work.
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 to the community.
This is a difficult concept for a lot of people. But this was the right move for Aaron and our family.
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:
I heard you were a good boy this year.
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.
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?
Celebrating St. Nick and Two Special Sons
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.
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.
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.
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)
Keep Climbing: Onward and Upward
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:
Helen Otten, my mom, died April 3 at the age of almost 93. I’m posting this in her memory. I’m also reminded of the importance of family.
The twelfth day of Christmas is Jan. 6th–Little Christmas, The Feast of the Magi.
Actually, it’s all the Magi’s fault. They are the ones credited with giving the first gifts.
Based on the number of people in line at the return desks last week, I’d say many people had problems with their gifts. (Actually I could see Mary and Joseph thinking the gold was useful, they could buy a wagon or better donkey, but what were they supposed to do with Frankincense and Myrrh. Myrrh–really????)
I know it is supposed to be the “thought that counts,” but it really is much more. Gifts are a whole cultural phenomenon.
My mother is 89.
Recently she’s had hip replacement surgery and has trouble shopping for herself.
Two months before Christmas she told me she wanted slippers. Slippers it is. I don’t have to guess her gift. And this is great…EXCEPT
Every day for the next month she would call me on the phone (usually at 6 AM because that is when she wakes up and is thinking about slippers) and define what kind of slippers. They had to have rubber soles so she could wear them outside if she wanted. And this is great…EXCEPT
She couldn’t tell me her size. It seems some Large slippers are size 8-9, some Larges are size 9-10. And the manufacture, design, model, production all make a difference.
I went to three different stores and brought her “Pair number one” on Thanksgiving. She didn’t even try them on. Which actually made it easier to exchange them, which is great…EXCEPT
She really wanted black. But none of the stores made black slippers. So, I picked out some navy size 8’s and 9’s and 10’s, and some pink (everything she owns is pink) in a size 8-9, and 9-10. And I figured I’d give her a choice. Which was great…EXCEPT
She decided she wanted slippers that weren’t slip-ons. “Only the devil would make slippers with open backs” and she has had slippers that covered her whole foot, well–her whole life. And, she thinks she has ugly toes, so–none of those slippers with toe cut-outs. So, I boxed up and returned the slippers. And it was great…EXCEPT
The next three stores didn’t have black or whole foot slippers. But they did have navy.
You know where this is going, right?
Yep, I rebought her the same slippers (that she wouldn’t even try on) from the first round. She opened them on Christmas and said they were perfect.
So, it makes you wonder.
Was the gift really about slippers at all?
Grandma and the Thong
The picture above is from a previous Christmas. My sister Martha worked in a lingerie store and gave each of the girl cousins a pair of thongs. They thought they were nice. Certainly something practical they could use. EXCEPT
She also gave one to Grandma.
The gift became an urban legend in our family. It brought down the house.
Even though mom didn’t even recognize the thong as underwear—it was the shared experience with her grandkids that made it the perfect gift.
Which again makes me wonder about gifts.
Aaron’s Christmas Gift and Charity
This Christmas Aaron went to a Christmas Party sponsored by a local non-profit. These are kind folks. Many of the people with severe disabilities are the poorest people in the county and don’t even have family members who can give them gifts. So, this is not only a nice gesture, it is an opportunity for these poor souls to get a little something extra.
This year the non-profit got items donated by local businesses to give as gifts. Over 150 adults with disabilities came to the Christmas Party and Dance.
There are so few recreation opportunities, many of the people put on their best clothes and showed up early. Many more wanted to come, but there was little transportation and they depend on staff–who didn’t want to bother.
At the party, even though they arrived early, there were only chairs for 100 people. So Aaron and Jack, his roommate, had to stand and hold their coats.
Since Aaron has balance problems, and couldn’t understand why he couldn’t sit down (people were guarding their chairs) he started biting his hand and pinching others. Not good behavior at a party.
Their staff person made the sensible decision to leave (even more people were coming in the already over-crowded room). Aaron and Jack were each given a “gift bag” at the exit. Which was nice… EXCEPT
The gift bag had a pair of donated slippers. Yea! I would be laughing too, slippers… EXCEPT
The slippers were size 11.
Aaron wears a size 9.
Now, no one with balance issues is safe wearing a pair of slippers two sizes too big. And, unlike my mother, these slippers were charity—donated. So there was no gift card or receipt, most people had no dutiful daughter, family or staff who cared to make an exchange.
And, Aaron couldn’t understand why anyone would give him slippers he couldn’t use. So he just carried the slippers around the house—making me crazy that good, kind people could be so dumb. After all who is the “intellectually challenged” person here? Did they think they wouldn’t notice the slippers didn’t fit? Or all people wear size 11?
Is “Just getting something to open” the point? Even if they can’t use it?
What is Charity?
If you plan a charitable event and are giving gifts:
Don’t just arbitrarily pass out slippers, or coats, or T-shirts with misspelled words.
Don’t give radios with no batteries—because they want to use the radio that minute and staff often won’t be bothered with batteries.
Don’t give them things you couldn’t sell or are broken.
Don’t make your interaction a one-time-event.
Do have a party with chairs and refreshments for everyone.
Do get to know people as individuals
Do think about what YOU would want to get
Do think about normalization, age-appropriate entertainment and gifts.
Do think about transportation and staff and family members
Do consider that the shared experience, like Grandma getting the Thong, may be the best gift ever—no excepts.
Keep Climbing: Onward and Upward
All my best,
Okay, best/worst gift stories? Am I just being an ungrateful jerk? What is the role of charity? Is it appropriate to give broken, torn things to Goodwill/charity? Only 258 shopping days until Christmas????