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To Visit or Not To Visit

March 24, 2013 By Leave a Comment

I begin writing this post sitting in a hotel in North Alabama, where Cami’s great-grandparents live. We drove here from Northwest Florida, where Cami’s Grammy and PawPaw live. We flew there from Northern Virginia, where we live.

Stick a fork in all three of us because we. are. done.

This six-day, two-state adventure is specifically for visiting family, some from Michael’s side, some from my side, all from Cami’s side. If we want Cami to spend any time with extended family, we have to travel to see them. Traveling, especially using multiple modes of transportation, agitates sensory processing issues like nothing else I know of. Traveling pushes more sensory buttons than a trip to WalMart. That’s saying something.

For instance, airplane seats are not very wide. Even very skinny people brush elbows with the passengers sitting next to them. Which is fine, unless you’re my daughter and you’re tired and still trying to adjust to Daylight Savings Time plus switching time zones for a week. Then, you don’t want strangers bumping any part of you, politely or not. You just want to hide and be left alone.

Waiting at the airport gate for a maintenance crew to fix the airplane you’re supposed to ride in for your connecting flight can be disconcerting. If you’re my daughter, it can also be b-o-r-i-n-g. You can’t find something fun to do as a distraction because you can’t wander far from the gate; when it’s time to board the plane, you have to be there. You can’t take your backpack off because it takes too much time to put it on again. You have to wear your backpack on your back, not your shoulder, and even that won’t prevent the bag from banging against seats and people because airplane aisles are not very wide.

If you’re my daughter, when you finally arrive at your first destination and your grandparents are waiting for you, you have to hug them. And really, you want to hug them because you love them, and you’re excited to see them. But you have to remind yourself that grandparent hugs are worth the momentary sensory discomfort because you’re just so tired of the sights, sounds, and smells from your already-long day, you really don’t want anyone touching you at all.

And it’s only lunch time of Day One.

If you’re my daughter, Day Two of visiting family means riding six hours in the cramped backseat of a rental car. The economy car sits low to the ground, so you feel every bump like there’s nothing between your rear and the road. After banging your shoulder on the door every time you climb out of the car, it doesn’t take long for you to miss your mini-van’s roomy back seat at home.

Traveling sometimes means sleeping in hotels. Hotels sometimes have scratchy blankets. If you’re my daughter, you have a daddy who requests—and receives—an actual comforter for the sleeper-sofa because he suggests the housekeeping service take it out of an empty room. The poofy comforter is better than the scratchy blanket because it’s softer, adding weight on your body and soothing you so you can sleep.

Traveling means sleeping in an unfamiliar bed, not on your own pillow, not being surrounded by your books and collections. Traveling (this time) means your dog isn’t with you; you’re not in your own house, not in your own space, and out of your routine. Is traveling with sensory processing issues worth it? We could just stay home. So why travel?

If you’re my daughter, the trade-off for traveling with sensory integration challenges includes irreplaceable experiences:

  • Walking around WalMart telling jokes to your PawPaw, who’s one person in your world who loves corny jokes like you do because they make him laugh.
  • Playing Madlibs with Grammy while she works in the kitchen, and loving her belly-laugh when you read back the silly story with her answers filled in.
  • Visiting a little French pastry shop with your dad, and choosing treats to take back to your grandparents’ house for everyone else to try. (The cheesecake is the best, although the pistachio macaroon tastes better than everyone expects.)
  • Touring the grounds of your great-great grandmother’s dilapidated and abandoned house while your mom uses her memories to paint a picture for you of how it used to look, and collecting nature treasures from the grounds and crying when the pine cone crumbles later in the car. (The crumbling pine cone gives you a chance to vent your emotions, though, a reason to cry because you’re at the age when you still think you need an actual reason to cry.)
  • Listening to your great-grandparents tell stories about the Great Depression, remember having gospel singings at their house when they were young, and recount the locations where all their people are buried.
  • Eating sandwiches, homemade French fries, and barbecue potato chips for lunch with your great-grandparents at their dining-room table.
  • Taking a walk around the hotel with your Nana to look for leprechauns on St. Patrick’s Day, and not minding so much when you don’t find any because it’s a beautiful day to just be together.
  • Drawing a picture of a fairy and of a dragon, and hand-delivering the pictures to your aunt and uncle.
  • Touring the rows and rows of antique cookware and car and boat parts at your great-great uncle’s house in the country.
  • Finding fossils in your great-great uncle’s driveway gravel, and hearing the cow across the street moo so loudly, it makes you laugh out loud.
  • Riding back down the road to your great-great grandmother’s homestead to collect a replacement pine cone.
  • Sharing a meal with another aunt and uncle at a restaurant, and enjoying the slider burgers even though they are extra-peppery.

Why do we ask so much transition from our sensory-challenged child all in one week? If we had an endless supply of money and opportunity, we could visit family more often and in shorter spurts instead of packing it all into one busy trip. Michael and I do the best we can with the resources and time we have. So does Cami, who has learned many different strategies to adjust to the transitions involved in traveling. The most effective coping mechanism happens when we return home, when she stays in her room for the entire day, when the only people she talks to are her dad and me until she’s ready to be with people again.

It’s a tricky balance to strike sometimes, this traveling with sensory processing challenges. It takes courage and constant adjustment. The memories Cami has of who she is and where she comes from are worth every single struggle.

Counting as blessings the many family connections we have,

Candi

Filed Under: Sensory Processing Disorder Tagged With: , , ,

Mighty Acts

June 8, 2012 By 2 Comments

“One generation shall praise Your works to another, and declare Your mighty acts….”

This winter, I distinctly remember telling God I didn’t see any need (or good) for layering multiple crises simultaneously in my life. It seemed like poor planning on His part, and although I didn’t go that far in my criticism, we both knew I was hurt by His timing.

On my porch today, He kindly reminded me in Ps 145, to set the record straight, now that I can see straight (er). I am happy to do so! I laughed recently at the description of a talkative woman: “her tongue is attached in the middle and flaps on both ends.” A vivid visual, and hits close to home. That being the case, let me be eager-to-utter-praise-declare-tell the ways God is quite PERFECT in His timing, mighty in His actions (on my behalf), and abundantly good (to my whole family).

The Mighty Acts happened like this…

Last fall, while I am spending weeks away from home setting up care for our elderly relative, my youngest sibling suddenly needs a multi-organ transplant, the sooner the better. Our parents are gone, so it’s just 3 of us.  My sister and I are in the pipeline to donate (a multi-month commitment) when my husband goes manic. All stop. I can do many things, but organ donation while husband is manic is not one of them.

Meanwhile, our elderly relative is quietly, desperately asking to come live with me. I never pictured being unable to care for her if she asked.  It would be my honor. (I want to live with my family too, when I am old.) But my husband’s disability is triggered by her condition, which triggers hers, which triggers him … and this joins the long list of things I cannot do. I know he is my first priority, and while others can care for her, no one else can be my husband’s wife. It’s not the first time his hidden disability limits what we can do for someone … so I have to refuse her, and it hurts like the dickens (whatever dickens is).

My sister is now the only donor possibility, when suddenly her nearly grown child relapses with a deadly cancer after 18 years. Obviously she’s out of the pipeline, and now two loved ones will die without a lot of assistance and intervention. We are a small family, we can’t cover all these bases. We are telling God this. We are begging Him for mercy, for reprieve … to let one of these cups to pass from us. Or to give grace to walk it out if we must drink them all.

And I am thinking how glad I am Jesus took my parents to Glory when He did. At the time, their deaths seemed early, premature. Now it seems merciful. I agree with God’s timing, and He is gracious enough to say, “I told you so.”

My just-stabilizing husband supports me as I go help the youngest, who is most critical. It’s not the first time his hidden disability has helped us help others. He has a tender and generous heart when it comes to these things. He flies to visit me in-between his travels. We conference call weekly with the new psychiatrist, who helps us walk together through these demanding situations. Because of the manic crisis, we switched doctors, and this one is exactly what we need right now. So back when my husband was out of control, God was not. God knew what was coming, and provided the counsel we would need to face it. I spend 2 months absolutely amazed at this….

God was not preventing the effects of a fallen world, but He was providing in them.

I am in a hospital caring for my young loved one when the transplant team calls. Oh my word, it’s true … with my husband stable, I am my sibling’s best hope. But on the flight home, I realize there is no scenario in the foreseeable future where it seems wise to leave my newly stable husband again for the 2 months it will take to donate an organ. My heart constricts in pain. I need to be home, AND I don’t want my sibling to suffer any more.  I never pictured a scenario where I wouldn’t be free to give one of my siblings whatever they needed in order to live. Nor can I imagine asking this of my husband, given his hidden disability. Should I ask him or just decline the transplant team privately?

When I land, we do talk, and he is able to process with me. Because of the manic crisis (which at the time seemed wholly unnecessary) he has come out of significant denial, leaving a wonderfully humble and cooperative heart. And it dawns on me, this is one of the first times, during crisis, he is able to help make things better for me, rather than worse. An answer to his prayers. This is a Mighty Act of God, one I thought I’d never see.

God’s next Mighty Act happens 3 days later. My sibling calls, “Guess what? I just got The Call – - the transplant team has found a match!”  Really??? After this long winter, it seems too good to be true … but it IS, thank you, Jesus!! God granted a new lease on life through the generosity of another family, in their time of grief. Neither my sister nor I were God’s intended donors after all….

ALL this is God’s abundant goodness to me.

“One generation shall praise Your works to another, and declare Your mighty acts … I  will tell of Your greatness … eagerly utter the memory of Your abundant goodness.” Ps 145:4,6,7

Declaring, telling, praising,

Joan

Filed Under: Extended family, God's presence, Gratitude, Marriage Tagged With: , ,

Sometimes you just have to play

February 1, 2012 By Leave a Comment

Confession.  I am a Martha.  Yep, it’s true.  I am a worker bee.  I am consistently guilty of working on something, anything, almost all the time.  I am not very good at just resting.  Or … deep breath … PLAYING.

AGH.  I said it.  I am guilty of not knowing how to PLAY.

When did I forget how to play?  I used to play as a child, as a teen, as a twenty-something.

But somewhere between working in D.C., law school (at night because I was working full time), marrying, having children, IEPs, etc., I forgot how to play.  There were things to do — good things — but always SOMETHING.

Not today.  Nope.  I am playing hookie.  No clothes to wash, meals to make, homework to review, papers to sign….

We are stealing away and going to play.  AGH!  I feel so … bad.  GLINT in my eye.  SMILE on my face.

We are stealing away to celebrate, are you listening?  GROUNDHOG DAY!  Yep, we are doing it.  We have talked about it for years and we are doing it.  We are taking the kids out of school and going to Punxsutawney, PA (it has only taken my looking that spelling up about 87 times to get it right.)

And I am thrilled.  So today, just today, I am going to play.

The blogs can wait.  The email can wait.  The phone calls can wait.

If you call and get my voicemail, just hang.  I’ll get back to being Martha tomorrow.

Affectionately,

~ Shannon

 

Filed Under: Family, FUN, Parenting Tagged With: , ,

Post Christmas thoughts

January 25, 2012 By Leave a Comment

I have been thinking about Christmas stress and analyzing what will take the most amount of stress out of holidays. At Christmas I let the kids set up the tree and decorate it by themselves.  I have given up on baking unless I have to take baking to a specific function and then I only bake if I can find time and/or don’t have the money to buy something to take. I put all gifts into gift bags, which saves a lot of time. I carefully pick which activities are important and which ones we can skip.

I have even dialogued with my family about how hard it is to partake in a large family gathering because of Braeden (8 year old, Down’s Syndrome). This year we did not get together with my parents and siblings as a large group to avoid stress. We had my parents over to our house Christmas Eve and then I got together with my parents and siblings by myself during the holidays. My family was very understanding about our unique challenges and we will work toward family gatherings that are more likely to be successful and enjoyable to everyone. We are considering what event we could plan that would be fun for the children and less work for the adults. We talked about renting a pool but we did not implement that this year. We will dialogue during the year to find a way to get together that is more likely to produce a meaningful visit with minimal effort from any family members.

Even with all of these stress relieving measures we still encountered some meltdowns. The biggest meltdown occurred when we took Braeden to my husband’s family Christmas gathering, at his brother’s house, a very small one bedroom.  My 21 year old daughter ended up pacing around the mud room, holding Braeden most of the evening, trying to console him. Braeden had a serious meltdown when everyone started to leave and needed to go through the mud room to exit. We only see my husband’s family once a year so we didn’t want to miss going or even excluding Braeden. I think we did the best we could, considering the circumstances.

The rest of Christmas went very well. I was really focused this year on bringing the real reason for the season into the forefront. I received an invitation to go to a veteran’s hospital to sing for the vets which we were unable to participate in due to schedule conflicts. I loved the idea and I asked our family if they wanted to go to a nursing home to sing for the residents on Christmas Day. I was so proud of their response. They loved the idea and they were willing to leave the house on Christmas morning before opening their presents to bring Christmas to the seniors. We sang in all three of their lunch rooms and my girls asked if we could make it an annual family tradition. My heart swelled with joy at their desire to bless others.

I think there will always be more stress around any holiday or special event, although I am always finding new ways to lessen the impact.

~ Twyla

Filed Under: Christmas, Extended family, Family, Holidays, JOY, Parenting Tagged With: , , , , ,

God’s Grace and Patient Zero

December 26, 2011 By Leave a Comment

The Hardin household is once again entering that special time of year. I am not talking about the Yuletide season; no, I am talking about the cold and flu season. What do I mean by that? Lets just say that our son Fletcher is a very giving young man, and it never fails that he “gifts” me at least one sickness during this time of year. You may be thinking, “If you know that this tends to happen every year, why don’t you do something about it?”

That is a good question, and its answer is slightly complicated. You see, there are several things about Fletcher, our relationship, and me that make my proclivity toward illness as predictable as Christmas falling on the 25th of December.

First, Fletcher deals with apraxia, a disorder in which he tends to put everything, and I mean everything, in his mouth. This of course means he tends to store germs in his jaws like a manic squirrel stores acorns on a late autumn day.

Second, although Fletcher is non-verbal, that does not mean he cannot communicate. Fletch tends to mimic Judge Reinhold’s guest character on the sitcom Seinfeld by being a “bit of a close talker.” Said another way, he often attempts to communicate with me by placing his forehead against mine while giggling joyously at one thing or another. This provides me with plenty of opportunities to receive anything that Fletch may have for me.

Third, Fletch demands that he and Dad have their “wrestle time” every single day. Now sometimes big brother Tucker stands in for me, but for the most part, Fletcher doesn’t feel complete until he and I have had our bonding time, a time that was so much easier for me when I was younger and he was smaller. His persistence in wrestling me cannot be avoided; he will grab me by the hand and pull me over on the couch until he has had his fill (usually around 15-20 minutes) of connected time with Dada.

Fourth, I have never met a cold virus that my body didn’t want to promote to a full-blown case of sinusitis. Whereas my little Patient Zero will bring a cold home, he rarely ceases to function at less than optimal speed for more than a day or so. Me on the other hand, will get really sick for a few days, the kind of sick where I find myself making deals with God much like Burt Reynolds’ character in the movie The End. You know what I am talking about, “God, if you allow me to breathe  through my nose again, I promise to give you 100% of everything I earn for the rest of my life!” You may be thinking, “If Fletcher makes you so sick, why do you go around him when you think he has a cold?”

There are three reasons:

1. I love my son. The Scriptures say, “love covers a multitude of sins” (1 Peter 4:8). As I have grown in my relationship with Fletcher, I now have a slight appreciation for those pastors who ministered to afflicted people during times of plague and disease.

2. I love my God. When I interact with my disease-ridden little fellow I am serving him and meeting his emotional needs. I do this not only because he needs me, but also I do it because that is what I am supposed to do. Fletcher needs his “wrestle time” as badly as the wounded man needed the Good Samaritan’s compassion (Luke 10:30-37).

3. I trust my Jesus. Although I am the biggest wimp in the world when it comes to being ill, fortunately, I don’t have to rely upon my own strength during such times. Jesus’ words to Paul are Jesus’ words for me: “But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me (2 Corinthians 12:9).” No matter what I am exposed to, I know that Christ will give me the grace to get through it, including anything that Fletch may give me.

With these things stated, I must go for now. I can hear Fletch’s fiendish laugh as he’s coming down the hall. It’s time for another round of wrestling. Before this impending Battle Royale, I need to go take another antibiotic because Fletch looks determined to win this time!

~ Todd

Filed Under: Autism, Challenge, Family, FUN, grace, humor, Parenting, Relationships, Trust Tagged With: , , , , , , ,

The Gift of Words

November 18, 2011 By Leave a Comment

I am working through what-I-think-are-normal stages of releasing my young adult children into grown-up life. I miss them.  I am thrilled for them!  I long for them. I’m excited for them! My own parents were great examples, in my opinion. We flew, they cheered. Well…I take that back. Mama cheered, and my dad had the longest sad-dog face you ever saw every time we drove out of the driveway into some next phase of life. But I felt free to fly, and I did. My parents did not put many words on their emotions, so I don’t know what they felt as they let me go. They are gone now, and I can’t ask them.

On the other hand, my dear mother-in-law, with the emotional insight and articulateness inherent to her hidden disability, expresses all her emotions beautifully, articulately, bountifully. She puts words on everything. So, I know what she felt when her sons left home, married, became fathers.  There is a picture in our wedding album, a bit blurred, capturing her face as she hugged my husband for the first time after we came back up the aisle, married. Her heart is in her face – her joy for him, her loss of her little boy, her love.

Tonight, I realize the gift she has been giving me, year after year. As a mother, I am just now starting my turn at experiencing what she was experiencing when we met over 30 years ago.

My parents gave me the example, she gave me the words. Because she is eccentric, and her emotions are magnified, it can be easy for others to miss that she also feels what is common to every other mother, woman. God chose her for me, and I am understanding more and more what a gift she is.

I have been grateful for both my husband and his mama, because they do put words to their thoughts, their feelings. Often it’s more words than I can process. By far. But now I can sift through the sheer volume and recognize the good. Even though I don’t share the exact same emotional life that they have, their descriptive word pictures do give me some words for my own journey. They are describing what it is to live life with their hidden disabilities…and along the way they give me vocabulary for my own heart’s path. Thankyou, my loved ones.

Joan

Filed Under: Emotions, Extended family, Family, Gratitude, Journey, Parenting Tagged With: , , , , ,

Trampolines Trump

October 7, 2011 By 1 Comment

“…teach the older women to be reverent in the way they live, not to be slanderers or addicted to much wine, but to teach what is good.” (Titus 2:3)

I just want to say a word about in-laws while I am going into all the other zones where angels fear to tread! I have a great mother-in-law. Although she does not hold to my Christian beliefs, she is cheerful, funny, compassionate, creative, highly intelligent and generous.  She never complains. She is also bi-polar, and has chosen not to take medication. As a result, she lives most of her life hypomanic, flying just below (or above) the radar of the mental health care system, employability, and all social norms.  Since time is very elastic to her (as with most unmedicated bi-polars I know) she cannot keep track of dates, days, nights, bills due, etc. So I am her Power of Attorney for finances and health care, which is to say, I pay her bills and take her to the doctor. What she does with the rest of her time is solely up to her, and I generally take an “if I don’t ask, she won’t tell” approach to her activities since some fall into the irreverent category.

A few months ago she called. “Joan … thsomethings wrong wi me…” her speech was slurred and I was alarmed. She’s the most active, healthy 75 year old I know.  By the time I got to her, it was obvious she was having a stroke. As fast as you can rush someone who is having a stroke (which is to say that time stood still) we raced to the ER. As always, it was eventful on more than one level. When you have a loved one with a hidden disability, and they have another medical event occur, you STILL have a loved with a hidden disability – you do NOT get to check the disability at the door so you can face one thing at a time. And usually the medical event itself exacerbates the hidden disability because of fear or pain. (Which, I might add, tend to highlight everyone’s personal challenges.)

SOOOO, she told the ER doctor (and will happily tell you) that we are ALL bi-polar because we live on planet earth, which is BI-polar, in case they hadn’t noticed, since it has a north POLE and south POLE = BI-P-O-L-A-R.  I just loved watching the triage nurse triage that. Later, when the neurologist asked her to walk across the floor (to check her gait) she belly-danced, and I do mean that literally. I guarantee you her brief 18 hour hospital stay added color and variety to everyone’s shifts!

Although she was terrified to submit herself to the money hungry corporate medical system, she did let them evaluate her for one brief night – and only because she loves me, she declared. I don’t take her fears or her trust lightly. I know she would lay down her life for me. How many daughter-in-laws are convinced of that?

Since then, she jumps 30 minutes on our trampoline each evening, at dusk, to increase her circulation. She sometimes strips down because she gets hot. I have to say, that did startle our dinner guests the other night. Some things you can’t explain, so I didn’t. But I hope I am that active at 75.

I have dear friends with mother-in-laws who hurt them, whether intentionally or not. (As a new mother-in-law, this scares me.) Gossip travels fast, especially criticism of young parenting or marriages. Some wives feel discouraged and stabbed in the back. It puts my own situation in a rather good light. I’ll take my trampoline-jumping-bipolar in-law. Trampolines trump treachery :)

Grateful for the one God gave me,

Joan

Filed Under: Bipolar Disorder, Extended family, Gratitude, humor, mental illness Tagged With: , , , ,

Sea Sick

August 26, 2011 By Leave a Comment

Our pastor did a 3 week series on Jonah, right before we spent our vacation at the ocean. So it was inevitable, when we got caught out in a little boat, with a huge storm between us and land-ho, we bantered about someone needing to confess their sin. Even without stormy waves, two of us survived the week only by taking daily doses of Dramamine. I could be the rep for that company, because at the moment, NO one is likely to be more grateful than I am for NOT being sea-sick. I thank Jesus, the Ultimate Chemist, for revealing that formula to man!

Now, you’d think it’d be easier to not sin on vacation. No work, all play (not that ANY vacation is “all play” for the mama.) I guess that’s possible, somewhere in the universe, but our family happens to have RELATIONSHIPS. Mix that together with hidden disabilities, and it was banana-slipping-peal easy for me to slide neck deep into a pit of anxiety about whether we will all make it through this life TOGETHER,  because of this little challenge of being a family with not-so-hidden disabilities.  My own emotions made me sea-sick, and where’s the Dramamine for that??

In Hebrews 4:15-16.

God had to push/cram those verses through my tight anxious emotions, to remind me I DO have a High Priest, Jesus, who sympathizes with my sea sickness. He’s not disappointed in me, He’s not discouraged. He KNOWS how my own sin of unbelief and the complications of hidden disabilities rock my boat. It’s  a mystery to me – how does Jesus know what it’s like to be emotionally, relationally seasick?? But then, I think, every single relationship He experienced had a hidden disability from HIS perspective, because “all things are open and laid bare to the eyes of Him with whom we have to do.” Heb 4:13 He had to feel nauseated, immersed in our endless waves of sin sickness. He was tempted like me (to despair, to frustration, to hopelessness) but He did NOT sin! … so run, girl, run on your little wobbly legs to His throne (all powerful) of grace and find all the mercy and grace to help in time of need. Yes, it was v-a-c-a-t-i-o-n, but I was in N-E-E-D. I kept humming, “not my brother, not my sister, but it’s ME, Oh Lord! standing in the need of prayer….”

Thankful for the dry land of His Word,

Joan

 

Filed Under: Anxiety, Bipolar Disorder, Confession, Encouragement, Extended family, General, God's presence, grace, mental illness, Parenting, vacation Tagged With: , , , , , , , , , ,

A Successful Trip

July 12, 2011 By Leave a Comment

Last week I wrote about our upcoming trip to an amusement park and the things we might do as a family to ensure that a good time would be had by all. That blog was titled “Four Days of Togetherness.” Here we are on the flip-side of that vacation and I am happy to report that we all survived. I’ll even go so far as to say that it was a great trip.

I thought it might be helpful to reflect on the things I mentioned in that post and let you know how each one went.

We began with a plan. There was a pdf of the park map available online so we printed it out and let Stephen study it. This worked well because when we actually arrived at the park he already knew what to expect and also had a good sense of the layout of the park.

While the 3-day event centered around Christian music concerts, we knew that Stephen (who doesn’t care for music anyway, especially when it is loud) wasn’t interested in participating in those. We never had a problem finding one or more people in our group who were willing to miss the concerts in order to hang out with Stephen.

Knowing how particular Stephen is about sitting next to anyone he doesn’t know we were very cautious about placement on rides. On the second day the kids suggested that we ride as ‘single-riders’ so we wouldn’t have to wait in line as long. Stephen was all for that. When I mentioned that it would mean he would be sitting by someone he didn’t know he said, ‘I know, it is okay.’ And he did it multiple times!

In order to combat afternoon fatigue we planned to leave the park and have dinner in a sit-down restaurant. It was a welcome break for all of us as well as a good time to regroup.

Stephen used his drink/snack/souvenir allowance wisely and even came home with $20 he had not used and we never had to listen to him complain about being hungry or thirsty.

Overall it was a great trip and there were no meltdowns. While we were making our daily plans we took into consideration not only Stephen’s needs, but also the special requests of everyone in our group (which included adults and children from age 3-17). Not only should Stephen know that we will do our best to accommodate his differences, but it is also good for him to see that we also do our best to honor the preferences of others in our group with different needs.

 

Filed Under: Asperger, Expectations, Extended family, FUN, Parenting, vacation Tagged With: , , , ,

Four Days of Togetherness

July 5, 2011 By Leave a Comment

Our family is about to load up and take a five hour road trip to an amusement park. We are meeting my husband’s sister, her husband, their son, his wife and their three young daughters. We will then spend three days in an amusement park enjoying rides, shows and concerts. Can you spell o-v-e-r-s-t-i-m-u-l-a-t-i-o-n???

Although this is a trip we have made before and a trip we’ve been looking forward to for several months, Stephen (our 14 year old son with Asperger Syndrome) came to me a couple of days ago and shared that he was feeling a little anxious about it. We talked about the fun we would have and I assured him it would be fine (because that is what I normally do.)

But, he did start me thinking. As I run through all of the potential “hot spots” in this trip we have to be intentional in planning certain aspects with regards to Stephen and his needs. Here are some of my thoughts.

  • Stephen likes a plan—it is very hard to plan in an amusement park where there can be so many unknown factors (long lines, rides closed for maintenance, weather). We should start with a list of rides, find out which ones Stephen particularly wants to ride and make sure one of us is prepared to ride with him.
  • Stephen isn’t a fan of music, so someone needs to be prepared to continue to ride and enjoy the park with him or take him back to the hotel for some relaxation time.
  • He is very uncomfortable having to sit next to people he doesn’t know. So, it wouldn’t be a good idea to split up and ride as ‘single riders’.
  • He gets grumpy when he gets tired. We should make sure there is a plan for him to get off of his feet and cool off when he reaches his limit.
  • When he decides he wants something (including snacks & drinks) it becomes his obsession. He does much better when we give him a designated amount of discretionary money he can spend on snacks, drinks, games & souvenirs. That transfers the responsibility for his decisions from us to him and helps him feel a sense of ownership for the choices he makes (which becomes a good life lesson, too.)
  • Last, it is good to remind the other members of our family about Stephen’s concerns and differences. If all of us work together to help Stephen navigate his issues, it will be a much more pleasant experience for all of us.

So, here’s to summer, family vacations, amusement parks and togetherness!!!

-Louise

 

Filed Under: Asperger, Extended family, FUN, Parenting Tagged With: , , ,
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