Ty's Personal Vacation Stories

My previous 3 posts shared a lot of advice on how to execute a successful vacation to Disney.  As you can tell, we have done that a few times with Tyler and have come away with a lot of solid tips.  Many of those tips could be true for any vacation you plan.

While typing I thought of a few special times there with Tyler that I would like to share.  The first that came to mind was how many times the staff members would go out of their way to show him a good time.  Even on a crowded attraction we would have a great ride and come back around to the start only to have the attendant say "you want to go again?!?" and then let us ride a second time, all the while people who were waiting in line didn't mind a bit. The staff knew it was challenging to get him on and off the ride so they could enhance our experience by giving us a longer ride.

Then there was the Tower of Terror.  My wife insisted on putting him on it and I was vehemently against it.  I wondered why I would put my autistic son in a dark elevator and drop his unsuspecting butt 13 stories.  When the time came there was literally nobody on the ride and I relented, and waited nervously at the bottom for them to return.  I expected to hear him wailing on someone as they exited.  Instead I heard him wildly clapping and cheering how fun it was.  He not only loved it, he wanted to do it again!

He loves to watch the fireworks.  And it was neat to watch the people around him watching him have a great time and smiling.

He loves Splash Mountain because of the drops and getting splashed.  That ride brought a laugh from deep in his belly every time.  He recognizes it now so much that he looks for the big drop as soon as he gets on.

A favorite story is a bit corny....but oh well.  Last year when we saw Mickey at a greeting spot he was very gracious with allowing us plenty of time to maneuver Tyler for photos.  Once we took the last photo and began to walk away I thanked Mickey for his time and he stopped me and gave me a hug.  Its hard to describe but it was a very personal embrace as though that person felt terrific empathy for Tyler and for me as his Dad.  I will never know exactly why that person was touched at that moment but I do know I will never forget that hug from Mickey Mouse.

Lastly is this photo to the left.  On our last park day we went to my personal favorite, Epcot.  I knew in my heart of hearts that this was almost certainly the last time Tyler would visit Disney World with us.  At that time he would likely enter a residential home soon, plus the trips (as much as I loved them) had become a lot for us to try to handle.  He was also less interested in the parks than ever before, so to bring him back would really not be fair to him anyway.  So I asked for this last picture to be taken of just him and I.  We had beaten the odds by having so many successful ventures there together and we were saying "goodbye" to a very important piece of our lives.  Immediately after this picture I spent one more minute with him alone to tell him how much I love him and how glad I was that we made so many memories there together.  How I would cherish every minute of it and I thanked him for sharing it all with me.

So I will end the Disney saga....

Be well and good luck.   Tom

 

Disney Vacations 3

In the other posts I talked about ways to travel to Disney, and how to set up your park experience to hopefully get the most out of it while still giving your special needs person a fulfilling experience too.  I want to touch on some other helpful ways to make the day go a little more smoothly while you are there.

Disney has one of the greatest special needs features in the world....FAMILY BATHROOMS! Oh how we love them.  Each park has multiple locations with these bathrooms so grab a map or know ahead of time where these are located.  They are plenty big enough to wheel in a wheelchair and is equipped with all you need to potty, change clothes, wash up, etc.  

All rides are also well thought out for handicap access if that is what you need.  Most times an attendant would take us to a special area and allow us to load onto a ride more easily without disturbing other guests.  If you feel you need help in some way just ask the staff and they will do everything they can.

For us, hydration and keeping cool was also a huge key to success in the parks.  We took bottles of water in with us every day.  And as you see by the pictures, we used a special cooling towel around our necks that would stay wet and cold for hours.  Once they started to dry you could simply wet them in a sink and use them again.  We had so many people stop and ask us where we got them because we looked like the most comfortable people in the park by mid day.  We also scouted out where to find cold things like frozen cokes or frozen lemonade to sip on in the afternoon.

Another important aspect for Tyler was keeping him from getting a sunburn.  Its difficult enough to keep our special people happy when they feel ok, but with a sunburn things can get bad.  We used a spray protector as well as having him wear a hat.  We also sowed a piece of cloth to the back of the hat so it would drape down over his ears and neck in the back.  This worked brilliantly!  

Another part of our plan each day was to work as a team.  On our last trip we were with my in-laws (who are wonderfully supportive people) which allowed us to all take turns doing things with Samantha, or getting on rides in different combinations depending on who was up for what at the time.  Most of the time Tyler would be on the rides with us however so we all enjoyed everything together.  But having everyone working together and being willing to do what was best to make sure everyone was having fun is the element which will ultimately make the most difference.  

Its important to continue to gauge the tone of your special person as the day goes on.  For us, if Tyler was happy and seemed to be tolerating the activities, everyone could relax and get more accomplished.  If he showed signs of being hot or needing a rest, we backed off and got cold drinks or got him some shady break times.  

Hopefully some of these tips help with ANY kind of vacation really.  I keep going back to the same thought: know your limitations, strengths, and weaknesses and incorporate those in your planning.  And may you be blessed enough to carry great memories because of it!

Be well and good luck.   Tom

Disney Vacation 2

As written in my last post, I think Disney World does a terrific job with special needs families. Tyler has been there quite a few times and each time he was treated with kindness and respect by the entire staff.  Just as importantly, so were the rest of the family.  Assuming you read the last post on tips to planning your travel and your stay, I want to also talk about ways to make your park experience better as well!

Tyler, like most special needs children, can't wait very long for anything.  So a LOT of my planning is centered around reducing wait times to do anything.  This can be quite a chore when you consider its Disney after all.  But it is possible to do.  The biggest tip I could give:  PLAN AHEAD! Before you do anything else, decide what parks or attractions you will do for each day and mark them on the calendar.  We avoided parks that had extended hours on a particular day because that feature attracts crowds.

You also need to manage expectations.  Most typical families fall short of being able to do everything at every park, so prioritize what you definitely want to get to versus what is expendable.  Its better to hit all 8 things you REALLY want to do versus trying to do 15 things and missing half of them.  This is where Fast Passes are also invaluable.  Some things on the priority list are less popular and don't require a Fast Pass because wait times might be low most of the day.  Get your passes the first day you are eligible to get them and cover the 3 most popular and new items.  Also use them for character greeting places with Mickey Mouse if this is something that interests you.  

Disney also has a program for special needs families which helps manage wait times.  If you want to do a ride and there is, say a 45 minute wait, you can go to the attendant and they will give you a special needs pass to come back in 45 minutes (or sooner usually) so that you don't have to wait in line and can go do something else, get a refreshment, etc.  Once you come back at your assigned time and use the pass you can now go elsewhere and get another one!  Its like having a 4th Fast Pass.  So between having 3 Fast Passes and 1 special needs pass, you can limit your wait time on 4 major rides which is a tremendous help.

Very important:  make sure you go straight to guest services at the entrance of each park.  They will give you a pass which will allow you to get your special needs passes in the parks that day.  

Also important:  invest in the Disney bracelets so that all of your ticket info is around your wrist.  They will download a notation on your special person's bracelet that will help identify them to the staff at each ride.  You will also want to download the free Disney app for your phone.  This will house the ticket information on your bracelet and any Fast Pass information you have reserved for each day.  It also serves as an itinerary to keep track of all passes and reservations for each park. Another great feature is that you can instantly see the wait times for all rides which can help you decide what you can do in short periods of time.  

At the risk of sounding like a Disney tour agent, you can see that all of the tools they make available to you can be used to serious advantage for special needs families if they use them properly.  With Tyler, the more we could keep moving and stay out of lines the better.  With him, once he is aggravated and impatient it is hard or impossible to reverse it.

In summary, schedule out each day well ahead of time, make a plan, reserve all of the popular attractions and restaurants that are at the top of your list, visit guest services for your "4th pass" and then go execute the plan.  

Be well and good luck.   Tom 

Disney Vacations 1

A few weeks ago I started to talk about good vacation options for families with special needs.  I would say that for us, by far, the most impressive place to take Tyler was Disney World.  It may take me a few posts to cover all of it but I do want to share some great stories from Disney.  Some of the most cherished photos and memories come from our family vacations there.

We have done Disney World in a few different ways.  There is no question that it is expensive.  But there are ways to do it and save money too.  And there are also ways to do it and make the trip more comfortable for your special needs person and the family as a whole.  Good careful plan will be the difference between a smooth trip and a rough trip.  

First of all is the planning of WHEN to go. There are resources that will help you pinpoint the best times of year to have good weather but more manageable crowds.  We chose to go in May, right around Mother's Day.  The weather is certainly warm enough (I think about 90 - 92 every single trip) and the crowds are moderate at best because it is too late for spring break but too early for school dismissal.  We also travel on the weekends so that our main park days fall in the middle of the week.  This helps us avoid the local weekend crowds.  There are also resources that will tell you which day of the week trends busier at which parks, so this keeps our wait times even lower.

Also planning where to stay is critical for you comfort and pocketbook.  The temptation can be to automatically stay inside the Disney resort, and maybe for some people that makes the most sense.  But carefully consider staying just outside of the park.  The cost difference can be significant plus the options on where to eat and what to do can be easier to manage. Yes you will need a rental car and you will pay to park, but the flip side is that if you are forced to only use Disney buses all week you could be stuck on a standing-room only vehicle for up to a half hour.  With our autistic son this would be a baaad idea.  There are many hotels within minutes of the parks with tons of food options that made Tyler much easier to manage.  One year we stayed at a hotel that had a basketball court which allowed us to shoot hoops with him each night to help him have fun and decompress at the end of the day.  You have to think about your special person's strengths and weaknesses and then decide which will provide the best option.  After all, the more manageable they are, the more you can enjoy the vacation too!

Also consider the best way to travel there. We flew with Tyler when he was quite small, but as he got older and the outburst risks became more worrisome especially in an enclosed environment, we decided to drive.  Last year we drove 15 hours to take the vacation.  That sounds crazy I know, but consider my thinking: Tyler does very well in the car.  I am in significant control in the car. When we arrived we didn't need to rent a car.  So as painful as the car ride was it allowed us to play to our overall strengths and thus the vacation was better managed.


Take the same strategy with your vacation as you do with every day life...the better you plan and the smarter you plan, the better your experience will be.  Take the time to sit and consider what your situation needs, what you are good at, and what you stink at.  Don't try to suddenly change your daily strategies because it is vacation, because your special person doesn't work that way.  Even if it means doing something crazy like driving 15 hours you will find yourself being glad in the end. 

As you can see by the photos, we were able to create memories that will sustain us for a lifetime.  I will never regret the planning, the money, or the effort because in the end all of that stuff fades away anyway.  Only the love remains. 

Create great memories, be well, and good luck.  Tom

Visiting Ty

Some common questions that I have gotten over the last few months involves our visits with Tyler and more specifically the frequency of visits.  This is a complex subject but I'd like to offer some thoughts on it tonight.

When we moved Tyler into his new home nearly 5 months ago, we had some thoughts about how we would approach visiting him but we didn't have much to go on.  We did know that we wanted to do what was best for HIM and the staff.  Of course it would be difficult not to see him regularly, but the hope is that he will live in his new home for many years to come, and that relationship now has to come first.  

Our first thought was that Tyler could not properly become used to his staff being his full caregivers if he saw us too early or too often.  Unfortunately because we could not explain to Tyler what was happening, he was basically thrown into it blindly.  This was a terrible feeling, especially at first.  But we had to deal with the situation for what it was. Tyler and the staff would need to learn each other as they went along.  Perhaps this was the best way because the relationship needed to be based on what they will come to know about each other and not what WE know as his parents.

So we decided to sit back and allow nature to take its course without any direct contact.  Oh we knew what was happening every day, and we got reports constantly even if we didn't see him.  We knew that the minute he saw us he would think he would be going back to his old home and this could confuse him and possibly set him back.  We couldn't risk that, this was just too important and too hard not to get right the first time.  He needed to rely on THEM every day and his routine every day like he relied on us, and to interfere with him before that happened would be selfish and wrong.  We got our updates, and we waited.

After the holidays we decided to see him for the first time.  It had been about 10 weeks since the move and the reports were that he was really taking ownership of his home and his routine.  We decided to see him at a "neutral site" location so that it would be less confusing for him.  It worked and it was a very nice visit.  He did seem a bit agitated after leaving us, but quickly recovered.

The second visit was at his birthday party and we included more family.  Unfortunately this did seem to be overwhelming for him, but it was good for the family to see him looking healthy and well-adjusted.  

Our third planned visit for last weekend had to be postponed because he had a bit of a cold. We are going to plan our next neutral site visit again soon.

Overall, this is a question that there is no right or wrong answer to.  But I think the key is that we have to evaluate what is best for him and his staff, and not for us.  In our situation it is better for Tyler if he largely lets us go.  That is a sad statement to make but its a harsh reality.  He does not have a great amount of capacity to change the way he sees people. He can't suddenly look at us as happy visitors, we will remain his parents that belong with him in a certain setting.  We have to swallow our emotions and understand that this is just who Tyler is, and we must help him in that way.

We certainly miss him and talk about him every single day.  And we will continue to see him and look to make the visits more frequent as we go.  But we will also gauge it to what HE is comfortable with.  Right now his life is about his new home, his routine, and his staff and as long as he knows that we are here for him and that we love him with every ounce of our hearts, we will accept whatever role he needs us to play.

Be well and good luck.  Tom

Tyler Update

As we approach Easter weekend we have a mix of emotions.  On the upside, we are thankful that Tyler has found a way of life that seems to be making him happier than he was toward the end at home.  The downside is...well...dealing with the truth that he is happier now than he was with us.

There is always that feeling of "we should".  Like the fact that it is Easter and "we should" have him with us.  This feeling had driven us for years.  At Halloween "we should" take him around the neighborhood dressed in a costume and holding a bucket.  Yet he hated wearing costumes and he didn't understand what in the hell we were doing knocking on doors and then not going in.  After 3 houses he was swinging his bucket and kicking our shins.  And yet we did it again every year because "we should".  At one point we figured out that doing something because we felt we should only served us and not him.  It wasn't intentional of course, it was just us doing the best we could.

The reports from his day program this week were that he we happy all week.  His residential caregivers said he has been great at the house for the majority of staff members.  He is loving doing chores like loading and unloading the dishwasher, helping to make dinner, vacuuming, and making his bed.  He is getting out into the community a little more as time goes on.  The trust in his caregivers has grown slowly but steadily.

So this is where the difference between the "we should" and true reality of the situation comes into play.  The reality is he is growing in his new surroundings.  With each new experience he is learning to trust his staff, and they are learning to give him the support he needs.  Two staff members are having a gathering at one of their homes on Easter and having Tyler and his housemate over for dinner and bocce.  He will be well taken care of and his stress level will be much less than if we tried to bring him into our family activities.

It's a hard reality.  But it doesn't have to be the permanent reality as we hope someday we can bring his old world and his new world closer together.  But for now it's about letting him grow and continue becoming this strong young man.  And for now "we should" support him by allowing him to grow.

Happy Easter.  Be well and good luck.  Tom

Great Link - Check It Out!!

Great Facebook page link below.  Please check them out.  There is so much humor (yet blunt truth) here that it inspired me to share. 

https://www.facebook.com/Autismthereallifefamilyshenanigans/

Traveling Dad

This was a travel week for me.  I spent a few days in Texas which is one of my more enjoyable destinations.  I like the warm weather and the people are generally friendly.  While I was there I got to visit Dealey Plaza and the place where President Kennedy was shot.  I enjoy historic places like this and its nice to take a little side trip from time to time.  Here is a snapshot of me in front of the Texas Book Depository.  The window from which Lee Harvey Oswald shot at the President is the half opened one just one story above my head.

Traveling now has been an adjustment at our house. You will often hear me say that even the positive changes are stressful and must be taken with a sense of care.  With Tyler at home traveling for work was perhaps the most stressful thing I ever did.  For days prior to leaving I would obsess over how he would do in my absence.  I could feel my stress level rise as the trip got closer.  Robin and I would have to arrange for Sam to be with her Grandparents in the evenings.  This would allow Robin to focus on Tyler and not have the concern over Tyler getting aggressive toward Sam. Unfortunately this meant that no matter how Sam was feeling, she had to be away from the house each evening until Tyler's bedtime.  Thankfully we had such great family support or else we never could have gotten through those trips.

While I was gone I worried a lot.  I would glance at my watch every so often and try to picture what was happening at home at that time.  All the while I had to perform the job I was being sent to do. In a very real sense I was trying to be in 2 places at once.  Sometimes things at home went fine, especially over the last few years, but sometimes they didn't go so well.  I would come home to holes in the walls and bruises on Robin.  It seemed that the more days a trip lasted, the more his aggression would increase.  We worried about the effect it had on him.  We worried about the stress it was putting on me especially after the panic attacks began.  We worried about the toll it took on Robin emotionally and physically.  And we worried about the lasting effects this may have been having on Samantha.  But lets face it, as caregivers we also have to be sure there is food on the table and the mortgage is paid.

Now the trips are different.  I can plan my itinerary around a much less restricted schedule. Samantha's only concern now is missing me and hoping I will bring her Swedish fish when I return home.  Robin's stress level is much less while I am gone.  And now I can try to relax more and focus on the business task at hand.  I'm not fully able to do that yet but I'm getting better slowly over time.  Certainly as important as all of this is that Tyler;s caregivers said he has had a great week.  His routine didn't change a bit which helps him tremendously.  He doesn't realize it but his stress level was better on this trip too.  

I appreciate all of you reading this who are playing that dual role of being a caregiver and yet fighting to do the job and keeping food on the table.  It is a massive struggle to put that game face on and try to pretend that everything is under control when what you are doing is quietly juggling flaming torches.  I've lived it and unless you have you cannot know how heartbreaking it is.  But you are not alone and some day you too will find peace.

Be well and good luck.  Tom

Tyler and Mommy



I came across this great picture today and wanted to share it with everyone.  Tyler was not always easy on Robin but she never thought of giving up on him.  We were very blessed that in the last few years before he transitioned he was much more accepting of her love and support.  She misses her buddy every day as do we all, but we couldn't be more proud of how well he is doing in his new home.  xoxo Tyler.  We love you.

Autism Dad

Great Sunday to you all!

I'd like to share a blog and Facebook page today.  Families with autism and special needs come in all shapes and sizes.  Please check this one out, its an inspirational story.

www.theautismdad.com

Have a wonderful day....

Tyler Update

Tyler continues to do well with his day program and his residential home!

His Case Manager visited him at his home this week and was very pleased with what she saw.  She said he was happy to see her and felt quite social while she was there.  He was enjoying the company of his staff and watching baseball.  The staff has him doing chores like making his bed, folding laundry, and his favorite...emptying the dish washer.  She also said his activity book is full of places he has been going.  I hear there are plans for him to go duckpin bowling this week.

We did plan on seeing him today at the park but he has a bit of a cough so we all decided to let him rest for now and wait for warmer weather.  We sure miss our boy but we need to be sure he is feeling up to it.  Samantha wrote him a note at school and said she misses him and wishes she could be with him now to give him a hug.

The staff at his home and his day program continue to show an incredible amount of support to him and to us.  They have quickly become our friends and we feel a special place for so many of them.

Kevin, Kevin, Heather, Kelly, Cindy, Taylor, Dave, John, Danielle, Britney, Pastor Dave, Rachel, and so many others we can never express the appreciation we feel for such wonderful people.

Be well and good luck.  Tom

Meanwhile Back at the Ranch

Before I get back to the subject of vacations, I did want to answer a question that I seem to have gotten a lot lately.  People want to know "so what are things like for the rest of you now?".  Its taken me a while to let some of those emotions settle in but I think I can now speak to that a little more than I could have a few months ago.

It was very interesting to watch our daughter adjust to the change.  For many years she spent a lot of time paying attention to our instructions on how to stay out of harms way.  To make it easier for her she would retreat to her playroom which is just off the kitchen.  Tyler never entered that room so she new it was a safe zone.  After he moved away, Sam would still spend quite a bit of time back there.  But within a week or two, we noticed she played in the living room or at the kitchen table a lot more.  Her toys began to pop up in more areas of the house.  Now we can tell she feels free to move about the house in any way she wishes, and she spends a fraction of her time in the playroom than before.  In other words we have now discovered the ability to trip over toys in every room of the house and not just one.

When Tyler lived at home, if we wanted restaurant food we picked it up and brought it home to eat.  It was something we did because it was just easier and less stressful.  Once Tyler moved away Sam still wanted to pick food up as opposed to eating in a restaurant.  This made us realize how conditioned she was too (I suppose that makes a lot of sense since she was born into the situation).  Fortunately she has since changed her mind and decided that food coming hot from the kitchen sure beats driving home with it any day.

For Robin I have to say I believe that her biggest fear was that she would be paralyzed by guilt.  I think this probably would have been the case if not for Tyler showing us that he really is enjoying his new life.  If he were struggling, she would certainly be struggling as well.  She can also now work more and she doesn't have to stress nearly as much when I travel.  Overall, I think she is doing pretty ok.

For me its a mixed bag of emotions.  I miss him and think about him about 10 times a day.  I miss how much he liked to interact together...it was almost constant.  He had such a large presence in the house that without him its almost like someone turned off all of the sound and you suddenly realize just how quiet it is.  I don't enjoy my walks the same way I used to.  In a way its like missing a limb might be, I was so accustomed to him that I don't quite know how to do certain things without him.  I have also struggled to live without the high octane stress (that's hard to believe but true) and that is where anxiety medications and therapy have played a huge role in keeping things smooth for me. On the flipside I am enjoying the added time and attention I can devote to the girls and to myself.

The most compelling thing for me is that I could not have predicted how slowly we have had to take this transition.  When you are used to a certain routine, and pace, and stress level, you can't be expected to turn that off and suddenly switch gears.  It really has been a process of decompression.  Our strategy has been to make very small changes that are comfortable.  We are keeping in mind that for nearly 25 years we had Tyler's continual care as the overwhelming top priority above all other things.  It was literally the single factor that determined everything else that happened.  With him thriving in his new home, that priority has shifted dramatically and left a void that we are figuring out how to fill.

I want to be careful with this comparison but if you saw the movie "Sniper" there is a scene where Chris comes home from such a high octane environment and while you would think he would be excited to get back to normal and relax, it isn't that easy.  His mind was conditioned to work at one level and he learned that reversing that conditioning was a slow and difficult process.  I'm certainly not saying the situation is the same but I do believe that the effects of the conditioning can be. 

Let me just finish by saying that if you are in the midst of making a transition for a loved one, or if you are even in the stages of considering it, do NOT underestimate the effects it will have on you as a caregiver even if it goes smoothly.  Be prepared for your own aftercare and make sure you have support for the long term.  Plan to keep your routine manageable and introduce changes slowly.  And most of all, if you feel like you need help, get help.

Be well and good luck.   Tom

Weekly Tyler Update

Good Evening!

Now that spring has begun to....well....spring.....Tyler's demeanor is once again turning toward the more "manic" cycle.  Every year at this time we see a very definitive change in him.  You can literally see it in his face, as he smiles more and his features become more relaxed.  There are other changes too.  For instance, his speech becomes much louder and much more repetitive.  His overall tone is happy and energetic, and he wants to interact with his friends.

Everyone reports things continue to go well.  He and his housemate are doing pretty well with still a little learning curve of how close he should get to Tyler sometimes.  Nearly all of the staff are so comfortable with him that aggression has become rare with them.  Hopefully with the warmer weather beginning it will allow him more walking and bocce time.  We are planning a visit with him this weekend so I look forward to the next update to share some more photos and information!

Tyler also went with one of his most trusted staffers to see "Stomp" at the American Music Theatre.  Apparently there was one minor incident trying to get him through the initial crowd leading to his seat, but once the show started he laughed and clapped the entire time.  Overall it was a success.  Bless those staffers who are braver than I in doing those things....

In our house there is still a feeling of "so far so good" at this early stage, but we are very happy with where he is today. 

I need to get back to the vacation subject as well as a few other things on my mind...so come back often!!!!!

Be well and good luck.   Tom

Autism York

Good Evening,

Parents who have children with autism may not realize that there is a great resource right here in York, Pa call Autism York.  Their website is chock full of information about support groups, literature, events, and more.  I've included the link below.  I spoke with some folks there who are extremely nice and willing to help anyone who reaches out to them.  Give this a look!!


http://www.autismyork.org/index.php

A Sister's Love

Our daughter Samantha is a very special little girl.  She is bright, beautiful, and full of life.  She is also a stubborn pain in the rear which is something else that I love about her.  But what makes her so amazing is the love and concern that she has for her brother.

Tyler never had the capacity to care about Samantha.  Little kids were never something he was comfortable with to begin with, so when this little crying, crawling, drooling thing entered his life he was predictably unimpressed.  To his credit, Tyler never caused any physical harm to Samantha.  He did smack her on the head a few times with his hand, and Robin and I spent a lot of time providing a buffer zone to protect Sam, but he also did his share of restraint too.

Samantha knew at a very early age that Tyler was not typical.  I believe during those early years that she was as understanding and accommodating that a very young person could be.  She was asked to understand very complex issues and she did her very best.  I also know there were times that I got frustrated with her for not correctly responding to him and I regret that.  I look back now with the benefit of hindsight and I realize just how much she contributed in her own way.

We explained to Samantha about 6 months ago that Tyler was going to be moving to a residential home.  To be honest, I expected her to be relieved.  I expected that I would have to have a talk with her about not being TOO happy with the news.  What she said floored me instead.  She thought for a moment and said she didn't want him to go.  That Tyler needs a lot of help and that he should be with his family to help him.

To me her statement was the most honest and pure love there is....she loves him without regard for what she gets in return.  How beautiful is that!

Even now, with months having gone by and Samantha living a very different type of life, she asks about him often.  She cried at Christmas when she saw an ornament with his picture because she didn't want to share Christmas without him.  She writes him letters and makes him pictures awaiting her next time to see him. 

I just wanted to share how proud I am to have a daughter who can only see her brother as  just that, her brother.  Not a man with autism, not a person that she had to be cautious around....just her big brother.  If she can love someone so unconditionally, so can every one of us.

Be well and good luck.  Tom

Poem For Ty

The tape I came across today
Of vacations and your first birthday

I saw the face of my little boy
The smile that brought us so much joy

Your mom and I without a clue
Of what to think or what to do

But even then you had that gleam
Which emphasized your self esteem

It's like you knew we'd be ok
Protected in some unknown way

Maybe you were the smartest one
Your faith that we could get things done

All these years I thought I led
I was following you instead

Tyler Update

It's always nice to have positive things to report.  As each week goes on we understand more and more that Tyler is in the living situation that he needed, and that he is happier living as a more independent adult.  

Tyler recently went for some images to make sure his shunt is still operating properly.  This was challenging for him because he never went through tests without me being right by his side.  But, as we have often seen, his staff was up to the task and so was he.  It wasn't without its difficulties, but it got done.  The best news is that the tests showed everything looked to be functioning normally.  

His home reported another solid week. His day program also said he was very good.  It sounds like his more "manic" personality is starting to come through as spring nears.  His home has seen the more energetic and exuberant side of him which is new for them.  It will be interesting to see how the next 6 months goes.  It was always great to see him so jolly, but with it comes with him being quite loud and repetitive.  

He also enjoyed his church activities very much this week.  We are so thankful he continues to do so well.  We think he looks happy and healthy.

Be well and good luck.  Tom

Myrtle Beach Pictures

 

Some of the Myrtle Beach pictures I am very fond of....

 

 

Myrtle Beach Vacations

In my house growing up, vacations meant one thing and one thing only....Ocean City Maryland.  Now I don't mind going to OC for a weekend or something, but in general we don't care to vacation there.  Compared to other beaches farther to the south, we find OC to have colder water, it is generally more expensive, and generally more crowded. 

When Tyler was younger we did vacation there quite a few times.  But when your special needs child is much smaller, the situation is likely more manageable.  Everywhere we went Ty was either in a stroller or up on my shoulders where I could keep everything under control.  But as he got older and bigger we found he needed more space.  For beaches we tried North Myrtle Beach.

The downside of North Myrtle is the long drive.  From our home it is over 9 hours. Thankfully Tyler was always very good in the car, BUT rest stops were a whole other issue.  Personally, I barely want to be in a rest stop bathroom myself much less try to maneuver my autistic child in one.  Especially when Tyler had no concept of touching as few objects as humanly possible.  I remember one incident where Tyler discovered an automatic paper towel dispenser.  When you rip one off another automatically feeds down.  So he HAD to take the next one and use it, and the next, and the next.  I had to practically wrestle him out of the bathroom.  Some poor guy tried walking in as I was wrestling Tyler out, and this poor guy did a fast 180 and decided he must not need to go that bad after all.  Getting back in the car was always a relief because at least we were back in isolated control once again.

The upside to North Myrtle is they have oceanfront condos that are large, fully functional, and relatively inexpensive.  We rented condos that had bedrooms, a full kitchen, and even washer/dryer units.  This gave us many advantages.  First, the walk to the beach was literally just a few steps.  The condos we rented were also in areas where the buildings were fairly small, so the beaches were much less crowded than OC.  The water temps were always 80 degrees or more so we could go down to the beach in the evening and still splash around and play.  The condos were large enough that Tyler felt he was not confined.  With a full kitchen we would eat breakfast and lunch in the condo, and go out for an early dinner before the crowds came in.  We found that for us and Tyler, North Myrtle gave us more space and options on how to proceed with each activity.  And after all, space and options are two very important things when you are a caregiver. 

My advice is that when you are considering vacation options, be realistic about your expectations.  Ask yourself what the highest priority is, is it to relax, or see certain sites?  Once you have determined the main priority, use your strengths to at the very least accomplish that priority.  For us it was to relax and try to decompress.  This is a challenge because decompressing and having Tyler in an unfamiliar place is a contradiction in terms.  But by staying in a condo we created space to keep him calm, we limited the amount of meals that needed to be eaten in restaurants, and we allowed him to access half-empty beaches very easily.  These advantages allowed us to worry less and relax more.  I can honestly say that it even though these vacations were challenging, the memories are of happy experiences there. 

I believe if you are realistic and carefully choose a vacation that fits your strengths and weaknesses, you can create wonderful memories with you and your special person.

Be well and good luck.   Tom

Feedback Question - Vacations

Most of us as caregivers have had this reaction when asked what they are going to do this year for vacation:



Usually this is followed by phrases like "what is a vacation??" or asking that person if they have slipped on a banana peel and cracked their head.

But in all reality there ARE places that are more easily navigated than others.  A caregiver, as well as the person being cared for need a change of scenery and some relaxation.  Make no mistake, vacations can be stressful as a caregiver because there is a ton of extra planning that must take place.  While it might be easier to roll your eyes and stay home, it is worth the effort to go to other places.  Yes, vacationing with Tyler was hard work, but those times will live forever with all of us. 

Since we are now in vacation planning season, I want to do a few posts on our vacation experiences and encourage everyone to find some time and space, even if just for a little bit.

With this in mind I'm asking for feedback in the comment section below on this question:

Where would you recommend that a special needs family go on vacation and why?

Please offer your thoughts!!

Be well and good luck.  Tom