Where each day's colors blend to become "My Stained Glass Life"

Posts tagged ‘Special Needs’

Asperger’s & Holidays

The holidays are upon us.  And all I have to say is, ugh, can’t we just skip it all?

Living in a household affected by Asperger’s leaves us all dreading the holidays.  It is easy to understand if you think about it.  Asperger’s is a developmental disorder which affects how a person is able to interpret the world around him/her.  In our every day lives, we make accomodations to help Bass and Lulu Grace find ways to absorb the many sensory experiences in their lives.  We control a lot of their surroundings on a day to day basis.  We plan way, way ahead.  We talk, talk, talk about changes that are coming.  We limit input from sources that are distressing.  We are able to take a break when needed.  We have time to prep for trouble spots.  The holidays turn that whole system upside down.

On top of the unpredictability of holidays, we also add the stressors of people who don’t understand and may step in to discipline a child on the verge of a meltdown.  We drag them from place to place, trying to squeeze in all of the family that expects to see us.  We disrupt their daily routines.  We create tremendous anxiety with the surprise gifts, leaving them wondering if they are really going to get what they wanted to so badly.  We ‘lie’ to them with fairytales of Santa Clause (Bass was devastated when he found out that Santa wasn’t real – because we LIED to him).  We expect them to dress up and look nice – which is hard to do when the only clothes they are comfortable in are jeans, sweats and t-shirts.  We want them to be polite and friendly.  None of these things are easy for these children on an average day.

By the time the holidays are over, Jon and I are left drained, exhausted, and feeling like terrible parents.  We have learned over time that our desire to have a picture-perfect holiday is not ever going to happen.  And we are okay with that.  What we are not okay with is that the holidays also make Bass and Lulu Grace feeling disoriented, unhappy, cranky, and sad.  So how do we change that?

Well, the past few years we have made some changes to what the holidays look like to us.

1.  We try to limit outings to necessary visits.  We do NOT make the kids go shopping with us to busy malls/stores.  If they wish to do some shopping, we limit their trips to small, local shops during the daytime, weekday hours.  Better yet, plan ahead a bit and make a special gift at home.

2.  We do NOT make a big deal out of things.  As a child the ceremony of decorating the tree was much anticipated.  I have had to realize that decorating the tree can still be fun, just not with 5 people decorating at the same time.  I separate the ornaments into piles for each child.  Then they can each have one-on-one time with me decorating.  This is a simple fix while still creating that special memory.  We have had to create our own special things that are not the typical holiday experiences.  And that’s okay!

3.  While gifts are fun for many people, they create way too much anxiety, especially for Bass.  When he was young, we went to great lengths to keep the holiday exciting, building the anticipation of that ‘big’ gift he wanted.  What we ended up with were meltdowns!  EVERY YEAR!  Now we ask him what he wants.  Last year we even gave it to him a few weeks early – tickets to a concert.  Then on Christmas he got a lot of little things.  We ask if he wants his gifts wrapped or not.  Generally he doesn’t want them wrapped.  The surprise of what’s inside is overwhelming to him.  Lulu Grace also struggles with gifts, but with her being so young she also enjoys the unwrapping.  If we know she is expecting something really special, we make sure it comes early on so that she isn’t stressing about it.  This has helped to avoid the building anxiety.

4.  While we have many food traditions for the holidays, I have found it is important to also keep the favorite every day foods on hand for Bass and Lulu Grace.  Especially with Bass, all of the holiday foods are tough on his stomach.  He also has a hard time setting his own limits with food, so we have learned to make sure that whatever goodies we stock up on are going to be gone within a day.  This is especially true for candy from stockings.  We have limited candy in the stockings, with more little presents instead.

5.  The kids schedules are non-existent during the holidays.  They do not have the structure of school days.  We try to stick tightly to their sleep routine, however.  Nothing sets us up for a rough day faster than Bass or Lulu Grace being tired.  Even though we operate with a different routine, we still work hard to prepare them for what will be happening from day to day.  We talk about where we will be going, how long we will be there, and have a plan in place for them if things are getting overwhelming.  This is especially true for Christmas Day.  We open presents at home, then go to my parents (with about 30 people there), and then go to Jon’s parents.  It is a day fraught with potential for disaster.  One Christmas night as we were trying to all get in the car to go home, Bass had had ENOUGH!  He climbed out of the car, laid down in a snow bank, and refused to move.  That was our last Christmas of not having a carefully laid out plan.  We refused to ever put him in that position again.

Now Christmas Day, although we keep the same schedule, is carefully discussed with the kids.  We spend a few weeks talking about what will be happening, who will be there, and then have a plan to avoid the meltdown BEFORE it happens.  Lulu Grace and Bass are old enough to understand when they are reaching overload.  The rule is that if they are reaching their limit, they immediately find us.  We will STOP whatever we are doing.  We then go find a quiet place to just sit and unwind until they are ready to go back to the party.  Lulu Grace may want to read books or just cuddle quietly.  Bass may find a quiet place to listen to some music.  After a bit, they are recharged, and we can all go back to having fun.  And we keep our visits short and planned.  We do NOT break from our schedule.  If we tell the kids we will be leaving at 4:00, we begin saying our goodbyes and preparing to head out in enough time to be gone AT 4:00.

6.  Relatives, as much as we wish, do NOT always understand.  They think Jon and I coddle and lack parenting skills.  We have, unfortunately, heard more than once, “If that were my child, I would… (fill in the blank).”  They think that Lulu Grace is a brat.  They think that Bass is spoiled.  Rather than getting into an argument over something they will never comprehend, I have found it easier to be above it all.  Jon and I are not bad parents.  We are more involved in helping our children navigate a difficult world than many of them will ever be with their children.  We have children with good hearts, who are compassionate, kind, gentle, and loyal.  Bass and Lulu Grace both have a strong need to control their environments.  From the outside, this can be difficult to understand.  For those people who truly want to know or understand, the best explanation I can give them is that their world is like a merry-go-round, full of sights, sounds, smells, touches, going around and around.  They need to be able to focus in on one thing at a time.  That can be hard to do when there is too much going on around them.  Is it any wonder that holidays can be like torture to them?

7.  I LOVE going to church on Christmas Eve.  Growing up, it was one of the things I looked forward to the most, the feeling of peace and joy, the music filling me, the candle-lighting, and Silent Night.  I have tried, unsuccessfully, to keep this as part of our family tradition.  The sanctuary is filled to overflowing, the music is loud, the room is stuffy and hot.  Many years either Jon or I ended up leaving the service with Bass or Lulu Grace as a meltdown was building.  The joy and reason for the season are still in our hearts, but we no longer feel the need to attend a service (with people who only go to this one service a year).  I still try to sneak away with Queenie to attend a midnight mass if we can, just for my own well-being and to share that special feeling with her.  But we instill God’s presence in our lives every day.  The ceremony of celebrating Jesus’ birthday can happen in our home just as well as it can happen in a church.

These are just some of the most basic issues that we deal with during the holidays.  I didn’t even get in to the social situations that the holidays put us all in.  Throw in Thanksgiving, a school concert, St. Nick, New Year’s Eve, and getting the kids back into their normal routines, and it is easy to understand why I dread putting everyone through it all.  The next few weeks, I will write about some of our experiences over the holidays, give you some of what we have found works and what didn’t.  There are bound to be some funny stories in the making, and also some troubling ones.  Maybe you have guessed from my post, but I’m trying to psyche myself up here, when all I really want is to ask is, “Can’t we just turn the calendar to January?”




My New Walking Partner

“Since 1995, Best Buddies High Schools has paired students with intellectual and developmental disabilities in one-to-one friendships with high school students. In the past, individuals with intellectual and developmental disabilities have not had the opportunity to have friends outside of their own special education classroom. By introducing Best Buddies into public and private high schools, participants are crossing the invisible line that too often separates those with disabilities from those without.”  www.bestbuddieswisconsin.org

On Saturday, May 19th, we participated in the Best Buddies Friendship Walk in Delafield at Lapham Peak State Park.  It was a gorgeous day, 80 degrees, sunny, and breezy.  This was our first walk as a family.  Queenie was our Team Captain, raising $150 in pledges towards the event.  We had five members in our team.  We have decided that next year, we are going to try to have the largest team there!  The walk was 2.5 miles, but the pace was easy going and definitely family friendly!


Lulu Grace was so excited to be walking with us!  She got all jazzy, as you can see from the picture!  She wanted to wear her striped knee highs, and I have learned with Lulu that some things just aren’t worth the fight.  Most days, it’s impossible to get socks on her feet, so I wasn’t going to argue about which socks she wore!  There were a lot of high school aged girls who participated, and they were dressed in capes and crazy outfits.  Lulu fit right in!Image

We ran into a couple of people we have met before.  We saw Brittany, a young woman who attended the pageant last year with her best buddy!  Queenie got her picture taken with the two of them at registration, and it was her facebook profile photo for a long time!  We also ran into a young man named Max who attends our support group meetings.  He is a budding photographer, and was asked to volunteer to take photos for the event!  We were so proud of him.  He did a great job!Image

There was no convincing Bass to come with us.  I was disappointed, especially once we got there.  The people that were there were so accepting, friendly, and open.  It is a community of people that I look forward to being more involved with.  It is rare that you find people who don’t question or look twice, who understand when Lulu didn’t want to talk or was upset when things were a little chaotic.  I listened in on some of the conversations that the ‘buddies’ had along the walk, and I was so touched by the genuine friendships that they have formed.  We were surrounded by t-shirts that said, ‘Be a Buddy, Not A Bully,” and “See the Ability in Disability.”  We were surrounded by people whose children were the target of bullying, whose children struggle with being seen for something other than their disability.  It was refreshing to be able to be in our own skin and be comfortable, because we were surrounded by people who get it!

Lulu Grace and Jon stopped along the walk to look at the butterfly garden.  I crossed the finish line and waited, and waited!  I was starting to think about heading back to find them, when I see Lulu’s shining face, bright red from her efforts.  She saw the finish line and started running!  It was such a cute moment.  She was incredibly proud of herself.  She wore her Best Buddies t-shirt to school yesterday, and was sure to tell everyone about her accomplishment.  I’m so proud of her!  And I think I may have a new walking partner!  🙂