Showing posts with label expectations. Show all posts
Showing posts with label expectations. Show all posts

Monday, July 8, 2019

3 Keys for Public Outings: Special Needs Edition

The thought of a public outing can create all sorts of thoughts and feelings for moms of children with special needs. Even though it may be challenging, leaving the house is a necessity in life. Moms take their kids to the grocery store, doctor's appointments, playgrounds, and restaurants. These outings may take extra planning when your child has special needs.

I have parented a child with special and medical needs for 13 years. We have learned many lessons together in that time. I'm still learning on how to support my child in public outings even now.

Last week, I took my daughter, Jaycee, to a water park. She wanted to go there; it was her idea. A hot July day wasn't the best choice, but it was the only day my husband was off work. Before we left for the water park, I had a picture of how things would go. I didn't envision a perfect day, but I did expect to be there for 3 or 4 hours.

The first hour we were at the water park, things went well. We swam in the pool. The kids and I went down a water slide a couple of times. We floated around the lazy river. Jaycee splashed and laughed. My son, Elijah, was busy running from one area to another. Then, all of the fun suddenly stopped.

Jaycee walked from the lazy river to her next adventure at a snail's pace. Sensing something was wrong, I encouraged her to sit down and take a break. I offered her a cold drink, and she guzzled it. My husband and I took turns sitting with her for the next half hour. Seeing no progress was being made, we asked Jaycee if she wanted to go home. To which she responded with, "Yes!"

I wasn't ready to leave yet. We were only there for 1 1/2 hours, but 30 minutes of that was sitting with Jaycee in a chair.

As we left the water park, I was hit with a twinge of disappointment. I wish Jaycee didn't tire so easily. I wish the day could have been a little longer. I started to get worked up about the abrupt ending, and then I had to calm myself down. We did what we could. I had to be thankful that we had an hour of fun.

It got me thinking about how far we've come over the years. Jaycee has grown in her ability to handle different public situations. I have matured with my emotions and responses to my daughter. For that reason, I'm offering three keys to managing your child with special needs in public outings.

1. Lower your expectations. 
Lowering your expectations may sound like you are preparing for only bad outcomes. That's not the case. If you have a glowing idea of what may happen when you take your child with special needs somewhere for the first time, you may be disappointed and miss some positives that occurred.

When Jaycee was 5 years old, we decided to take her to the movie theater to watch "Winnie the Pooh." She loved Pooh bear and movies in general, so I thought it would go well. I pictured her sitting in the seat and being elated when her lovable, yellow bear appeared on the big screen. When the lights went down, Jaycee got scared and dropped to the floor. She sat there for the duration of the hour long movie. She never saw any of it. My son, who was only 2 at the time, laughed and watched in delight.

On subsequent visits to the theater, my goal for Jaycee was to sit in the seat for any amount of time. We didn't see movies often, so it took her 4 years to watch a movie from beginning to end. "Cinderella" was the first movie she watched, but she spent the previews sitting on the floor. Now, Jaycee sits in her seat the entire time holding her popcorn and soda like a champ. It didn't happen overnight. I had to have patience and not take her reactions personally, since I was the one planning our outings.

2. Respect your child's limitations.
When deciding on what public outings to attend with your child, you always want to consider your child's limitations. There are some things that I know will be hard for Jaycee. Any outdoor activity with heat means Jaycee's endurance will be short even now at age 13. When she was younger, I had to learn what bothered her, which was frequently discovered through trial and error.

When Jaycee was 3 years old, I took her to a Wiggles concert. She loved the Wiggles, and I was looking forward to a fun outing with my little girl. I purchased seats in the back, because I was unsure of how she would react. I fully expected her to be happy. When the lights went dark, Jaycee started crying. It was unusual for her to cry, and I couldn't calm her down. I tried pointing out Wags the dog and Greg Wiggle to help her recognize what was happening. I eventually had to leave and walk the hall with her. When she calmed down, she immediately fell asleep. My mom and I sat through a Wiggles concert; Jaycee woke up for the final few minutes.

The concert didn't go as planned, and I didn't try to go to another one for a long time. Dark, loud, and unfamiliar places confused Jaycee. For the most part, I tried to avoid these, because entertainment situations weren't that important. It wasn't worth her tears and confusion. She needed time to mature, and I respected her limitations.

Jaycee currently gets very stressed on days we have doctor's appointments. I know it's not a good idea to add anything fun before or after those appointments or she will understandably have behaviors. I respect those limits when possible.

Sometimes, you can't respect limitations because real life requires your child to cope. When Jaycee was growing up, I planned outings to restaurants and stores. Restaurants weren't too bad for Jaycee unless something inside was different, changing her routine. Stores were a real struggle. She wanted to run off and didn't understand dangers in parking lots. It took much mental effort for me to keep Jaycee safe. I couldn't avoid these situations because they were a regular part of life. While I understood that Jaycee struggled in these situations, I needed to push her to learn how to behave properly. On weekends when my husband was home, we intentionally went places to practice walking in a store, staying with a parent, and safely entering/exiting a vehicle. It took years (literally) of practice and patience for stores to be an enjoyable experience for both of us.

3. Celebrate the small victories. 
In all of the unexpected difficulties with your child, it's important to recognize and celebrate any victories. Your victories will probably be small steps in the right direction instead of huge accomplishments. It's important to reflect on how far your child has come and maintain your patience for what is still ahead.


I hope these three keys will help you gain a healthy perspective when taking your child in public outings. As a parent, we can't control our child's responses to different environments and situations. We can only help them through it, teach them when appropriate, and respect what they can't do right now.
submit to reddit

Tuesday, May 15, 2018

Mother's Day & What I Lack

Last week, I had a Mother's Day post on Key Ministry's site. If you missed it, have a read:

I have a small struggle on Mother’s Day, and it’s for a silly reason.

A few years ago, my son developed a skill that my daughter has not, and this is what trips me up ever so briefly. When a holiday or my birthday comes around, my eight-year-old son thinks of me. He panics if my husband didn’t have time to take him shopping for a gift for me. He hunts around in his room to find special treasures of his to give to me to express his love. I’ve received a Santa hat, a teddy bear, and sea shells as gifts from such occasions. They are tucked away in my bedroom, and I think about him when I see these items.

Keep Reading...... Click Here: Why I Will Lack Nothing This Mother's Day


submit to reddit

Tuesday, June 9, 2015

When I Wish We Were Chameleons

Sometimes, I forget things.
I forget that Jaycee looks different.
I forget that her riding in a stroller is an odd sight for other children.
I forget that her tongue is out of her mouth most of the time.
I forget that she often makes weird noises.

But, then I'm snapped back into reality and I can no longer forget.

We just took our camper out for the first time last week. We spent months waiting for school to end to have the time to take our first trip. The kids were excited. They each claimed a bed in the camper months ago and were ready to go.

The first trip out went pretty much how you would expect your first trip to be. We were about 6 feet short of reaching the water hook up. I was short two blankets and one set of sheets. Nothing major went wrong thankfully.

My husband happily cooked on the campfire. Jaycee tried s'mores for the first time, which she absolutely loved! Then after dinner, we decided to head to the camp playground. It wasn't a long walk but Jaycee's feet were covered with blisters, so we let her ride in her stroller over to it.

As soon as I wheeled her on the playground, a group of very inquisitive children ranging from 4 to 12 years old approached us.

"Is she hurt? What happened?"

Followed by, "Does she have autism? My brother has autism. He's in special education."

I replied, "No. She has Down syndrome." I had never been asked if she had autism before. That was a new one!

Then the youngest in the group asked, "Why is her tongue hanging out of her mouth?"

"It just does."

"Can she talk?" was his follow up question.

I gave my patent answer, "She can say a few easy words like mama or dada but she mainly signs or uses other ways to communicate. Her mouth just doesn't work right."

"Why not?" asked the boy.

I didn't have the energy to answer him. At this point, I was trying to back away from this nice but talkative bunch and work my way to an empty bench. Finally, they left me alone. They tolerated Jaycee's presence on the playground but the children were discussing her Down syndrome and noises among each other.

Then the strangest comment that I have ever heard from a child's mouth about Jaycee happened: "She can't help it. She has Down syndrome. A lot of people die from that!"

"I'm ready to go," I whispered to my husband.

He told me to relax, to remember that they were just children, and that they were just asking questions. He was right.

But, these are moments when I wish we were chameleons. I just want to blend in with everyone else. I don't want to be noticed. I don't want to be questioned about our family differences.

I wanted to go on our first camping trip just like any other family. I wanted my kid to climb a ladder and go down a slide without stares and comments.

There are places where we are chameleons, however. Jaycee is a chameleon at school where everyone knows her and understands her. At events like Special Olympics or Down syndrome walks, we blend in. At the church we have attended for the past 4 years, we are chameleons even when she's standing in the parking lot screaming. At our local gas station, we are chameleons even as Jaycee races to the juice cooler and back to the counter cutting off anyone who may be standing in line.

I'm thankful for these places where we feel like everyone else. It makes the times when we aren't chameleons much easier!


Jaycee's first s'more. She loved it!
submit to reddit

Monday, December 29, 2014

What Makes a Year Good?

The end of the year.....In some ways, I use to dread it as I took stock of everything that happened in the course of 365 days. An evaluation would then be made to determine if overall the year was a "bad year" or a "good year."

The mental checklist was something like:
-Have we had many hospital admissions, illnesses, or unexpected health issues? If yes, that's a big indicator of a bad year.
-Have we had lots of medical bills? If yes, another sign of a bad year.
-How much money is left in savings? Not much? You guessed it, blame it on a bad year.
-Was I able to stop stress eating and FINALLY get into those smaller sized clothes I've been saving for "one day?" No, still in the "temporary" fat jeans? Yikes! Another sign of a bad year!
-Were we able to take that vacation that we dreamed about taking at the beginning of the year? Occasionally, the answer has been yes and finally a point was scored in favor of a good year.
-Have we had a major crisis that was unexpected and caused a disruption to our life? Most likely, every year the answer was yes & thus, a bad year was the final result.

The year end evaluation based upon these factors mostly seemed to point to one thing. Bad, bad, bad. But, I don't feel "bad" about my life. Sure, there are days that are hard and are bad. Any day that involves the ICU, respiratory distress, surgeries, or panic at 2 am aren't necessarily ideal, but they pass. There are plenty of good, happy times too. Why does bad seem to be the main descriptor of my year then?

A couple of years ago, I started to take stock of how I was taking stock of my days and my years. I now understand my unrealistic expectations were always resulting in my year being "bad." A year without hospital admissions would be awesome, but maybe it's not attainable. If that's my goal, then I'm setting myself up disappointment. I once dreamed of a day when Jaycee would be off medications. Over the last two years, we have added more and more medications. It's unrealistic for no medicine to be a goal; it's a fantasy world. Being upset that medical bills prevented us from buying some new object of our desire, just seems trivial. And should my pant size really determine if my year was good or bad?

A good year is simply this, am I ending the year:
-loving my family well?
-loving God and following His commands?
-demonstrating God's love to people?
-in a better mental state than I started?
-with my husband and two children alive?

Yes? Forget the other stuff! It's been another successful good year!!

submit to reddit