Special Needs at Disney World

Bright Eyes and Curly Girly with CinderellaWe are in the middle  (literally) of a trip to Disney World.  It truly is a magical place for kids of all ages (that would most definitely include yours truly).  However, like any good thing, it can quickly become a bad thing if not handled properly.  A corollary is that too much of a good thing, is no longer a good thing.  Here is some advice on how to keep the special times special for everyone and to maximize the great things the children will enjoy.


1) Establish your home base

Beautiful excels in this department so I really do not have a lot of personal experience to add here, but I can tell you what I have observed by watching her, and what helps.

First, pick a place that will have a place for everyone.  There are too many of us for a hotel to qualify.  Consequently, we rent an apartment or, as in this last trip, a home.  Literally, our home base, is a home.  This provides a comfortable landing spot for everyone in the family.  The irony is that it was cheaper than a single hotel room ($125 a night).

Secondly, settle them in.  Show them around.  Where are they going to sleep, eat, bath, use the restroom?  Where are you going to be if they need you?  Where is the food going to be when they are hungry (you still need to make sure you control what they eat, but they need to know there is food)?

The first night in the house, Curly Girly opened the refrigerator and commented that they didn’t keep much food in the house.  You have to love that.

2) Set Expectations

We have 4 firstborns in our little pack.  They all want to know the plan and become agitated when there is any kind of variance.  I am sixth born, so for me, “winging it” is second nature.  That is a conflict waiting to happen.  To avoid that, prepare your children before you leave.  It is too late once you get there because they will be seeing things to thrill them before they even get to the park.  Even the street signs on the way in are “Disney Special.”  I always tell the children  that if they have a happy heart, they will have a happy time.  If they are unthankful, they will be miserable.  They also know the parks (from experience and the promo video that Disney will send for free – HIGHLY recommended) so they can tell me ahead of time what they want to do when they get there.  That way we can prioritize those things they really want to do rather than the latest thing that catches their eye.

3) Make use of Services

Disney does a fantastic job to accommodate people of all types.  In some ways, it feels like a convention of families with special needs.  However, you need to ask in order to be receive assistance.  To start, head to Guest Services and ask about services available for children of special needs.  I recommend inquiring about the Guest Assistance Card.

4) Remember the Critical 3 needs

If I weren’t so tired, this topic would be number three.  I am sure you can cope.  Nutrition, Hydration and Exercise are things your children need in steady doses.  Make sure you are all  drinking regularly, getting some healthy snacks (trail mix, peanuts, granola bars, etc.) and getting some chance to use their big muscles (if they are mobile) will help keep their them from wild mood swings.  Disney has play areas in every park.  Use them.  Trust me, it will be worth it.

5) Remember their frames

It is easy when in a place like Disney to push on to “just one more thing.”  The problem is at some point, you will push the children beyond what they can handle.  You are asking for a meltdown if you don’t pay close attention to their conditions.  Disney provides something for your eyes to see everywhere you look.  Additionally, the volume is loud, the crowds are bustling, there are all kinds of smells, and it is probably hotter than they are used to.  All of this is pushing their senses beyond what they normally handle. It can be mentally exhausting for them just to filter out what they don’t want to pay attention to. Keep that in mind and pace yourselves.

Part of pacing yourself is resolving not to stay too late, and not to try to do everything.  Yes, tickets are expensive, but if you want this to be something your family enjoys, then be prepared to stay extra days rather than make the days too long.  Disney’s tickets after day three are about $11 a day.

6) Leave a “down day” in your schedule.

Yesterday, it was obvious that P.C. (who is a sensory avoider) was out of gas.  We were literally pulling out of the street from our rented home when we decided he needed a break.  He was beginning to deregulate and we hadn’t even gone a block.  I stayed home with him and went through a sensory diet that included a lot of big muscle exercise and he was a new little man.  He had a great day at home and was extremely happy again (his usual state).

Today was a great day for him, probably his best of the trip.  In addition to being better prepared and regulated, he also knew his own limits better and was not afraid to ask for more help than previously.  The “down day” made the rest of the trip possible for him.  He can now enjoy the next couple of days before we head back home.

Making Memories

Ultimately, a trip like this is about making memories together as a family.  The question is, what kind of memories are you going to make?  If you approach the outing with preparation, and patience, you will make some great memories that the whole family will enjoy.  If you don’t you will create memories of anger and tension.  No one chooses to make the second of memories, but if you can easily end up there if you don’t work at it.  Find what works for your family and enjoy your trip!

Children see from a Different Perspective

We have been doing some rearranging in our dinning room in order to make it more guest friendly.  When you have 10 people that regularly gather around your table you need to get creative for even a small family join you.

Last night as we sat for dinner and were preparing to thank the Lord for our food, PC blurted “How did that light move!?”  He noticed that the light was no longer over the center of the dining room table and was now over Beautiful’s chair.  He was enthralled with the idea that the light could move without him knowing it.  We all had a good time with that knowing that the light didn’t move, but the table had.

This funny little occurrence served as a good reminder for me that while our age and past experience usually gives us a more full bodied perspective, there are two important points to remember.

  1. That isn’t always true.  Sometimes our experience causes us to jump to a conclusion that isn’t correct.
  2. Just because we see something (and it might be true), it might not be true for the kids.

We all have experience with number 1.  The important consideration when helping disciple them is that we need to slow ourselves down and make sure we have all of the facts before we charge off with a “solution.”  I know I have committed this mistake more than once and I pray that I remember to take my own advice so it doesn’t happen anymore.

Number 2 is a bit more tricky.  We may be absolutely right as rain about something, but the child may not see it the same way.  This is where we need to really slow down and help bring them along.  All of the “solutions” you provide will be completely lost on the child because they are not on the same page. 

Going back to PCs shifting world for an example, if I had tried to maintain that the light didn’t move, it would have turned into a debate.  He could see plainly that the light was now over his mother and not the center of the table.  In order to help him wrap his mind around it, we needed to show him that the table moved.  At that point, the rest was taken care of automatically.  He was a little disappointed that it wasn’t quite so spectacular, but he was thrilled that his mother now had more light, like an angel.

The real lesson here is that when you disciple your children, make sure you understand their perspective before you fix the wrong problem and create frustration for both of you.  Take the time to understand what they were thinking before you model and correct their behavior.  You will find that showing them that table moved is whole lot easier than convincing them the light did not.

A good kind of Brokenness

This post is a little slower coming off of my fingers because I only have use of 9 of the 10.  One of them, a very important middle digit (important to typing that is) is in a splint for the foreseeable future.  Bone breaks are never fun, but I will take this one and understand the blessing that it represents because there is also a good lesson here.

When Beautiful and I went to urgent care on Sunday to have it looked at, and I explained that I injured it playing football with my son, she looked at diminutive P.C. doubtfully.  I explained that it was his bigger brother who is 12.  She was still skeptical that it was broken and not just sprained, but she ordered the X-Ray anyway.  That is when things changed.

When the doctor reappeared in the room a short time later, she was a lot more animated than before, in fact she seemed a little excited.  That is when she said, “It is not only broken, it is an impressive break.  The bone is completely detached in the finger.  I would like to see the 12 year old that threw that ball.”  We had to laugh a little.  We are used to Thunder doing all kinds of things that people don’t expect (keep in mind this the boy that scaled out of his crib, jumped off of the dresser and came running out of his room at 10 months).  Beautiful gave the doctor a few details on him and I provided the picture on my phone.  We received the familiar refrain, “He is only 12!?”WP_000157

Thunder in adult catchers gear

The whole thing is sort of funny now that Thunder is not feeling guilty about it (it was my fault after all because I was the one that made that lazy catch).  And therein lies the lesson.  Thunder was not created to be an average child.  The differences that make him what he is, also come with special challenges. He is WAAAAY past the age where I can play at anything less than my best with him.  But, even when doing that, I have to expect I will be visiting more doctors in the future.  I will take that with joy.  There aren’t any purple hearts for a non-Samoan raising a Samoan Son, but I am okay with that.  That kind of brokenness, acquired while helping my son figure out how to be the most that God made him to be, is a good kind of brokenness. 

Being There when you are There

I am sure that almost everyone my age has heard the song The Cat’s in the Cradle.  For the iGeneration, I will summarize:  It is an artful, depressing song about a self-centered busy guy that raises an admiring son, who grows up to be a self-centered busy guy.  We all know people like that, but what is easy to forget, is that, at some point we are all that guy.

Even if we don’t have responsibilities, there are times when something other than the little ones in the room have our attention.  Our generation is so connected that we are flooded with information constantly.  It is too easy to sneak a peek at that one last email, or glance at the phone or T.V. or whatever glass information panel you have in your home.

Not counting those distractions, when you have a lot of people in your home, it is easy to notice the loud ones and ignore the one quietly talking right next to you.  I have to remind myself from time to time that I am the adult and I need to control myself, because otherwise, I am sending a really bad message to my children and my bride.  That message is putting seeds into the ground and no one wants to harvest that crop.

If I am distracted, I am telling them with body language that whatever has my attention at that moment is more important than they are.  So, fast forward 10 years with that kind of constant message and what kind of relationship do you think I would have with my family?  What kind of people would they turn out to be?

When I interact with people, especially my family, I need to make sure that I do what I teach.  Eye contact, eye contact, eye contact.  When I am spending time with them, I need to get on their level and get my head in the game and focus on them and what is important to them.  I need my mind to be present with my body in the conversation with the people that matter most.  I need to be there when I am there.

Looks can be Deceiving

P.C. came to us with a  variety of conditions, one of which is known as Pain Agnosia.  This essentially meant that he had an unbelievable amount of pain tolerance.  For instance, he would be running along and fall *splat* on the concrete driveway. Then pop right up and keep running, skinned knees and all, calling “I ‘m okay,” over his shoulder.  Initially, we simply thought he was one tough little man.  Later we learned he had issues processing sensory input.  This was only one symptom, but it was telling.

We learned that it is not uncommon for children who are adopted or fostered to have elevated levels of Cortisol.  Cortisol is known as the stress hormone, because the body naturally produces it to deal with emergencies.

Fast forward a year and Beautiful and I are in over heads.  What worked fantastically for our 4 other children did not work for P.C. Consequently, we started looking for resources.  That is when we found Dr. Karyn Purvis and Dr. David Cross of the TCU Institute of Child Development (http://www.child.tcu.edu/research.asp).

We were skeptical, at first, because it was so different from what we knew and what we knew worked. Even so there were elements of it that rang true to our bones, most notably the connection building. We needed to swallow our pride and do what we was best for him.

Fast Forward a few more years and we have a new problem with P.C.  He is now extremely pain averse.  By that I mean the boy will go to extreme lengths to avoid anything that even looks like it might be painful.  I am convinced this is the case because of the different approach to parenting.  You see, as we built connections with our little P.C., his stress levels dropped and his cortisol levels with it.  The result is that now he feels pain and it is a new, and very unpleasant experience. 

Some would look at that pain aversion that he is now exhibiting and see a boy that is digressing.  I am grateful for the great counsel of others, and by that, I know better.  What appears to be digression is actually healing.  Our son, no longer exists in a state of emergency 24×7.  Now he is free to enjoy life with all its pleasures, and yes, even its pains.

Planting and Harvesting Smiles

A couple of weeks ago Little Z hit that milestone where he could smile based on stimuli.  Prior to that you will get an occasional smirk, but you never know if it is response to your antics, or if they are just having irritable bowels.  During those weeks before you know he is smiling at you, you are doing every fool thing you can to get a reaction out of the cute little bundle.  In addition to that, you are changing innumerable diapers, getting up at unhealthy hours of the night to feed the little guy, and toting him pretty much everywhere.

In short, you are putting a lot more into the little guy than you are getting back out.  From an economics standpoint, this would seem like a bad investment.  While parenting is like economics in some ways, it is also like farming.  If you have never grown something, let me just summarize by saying that you will spend significantly more time working on getting the crop to the point of harvest, than you will actually eating the harvest.  Parenting, like planting, is not about the return on your investment of time.  It is all about rewards that are impossible to measure with human metrics.  The flavor of fresh grown produce that goes directly from the garden to the table is amazing.  It has so much more flavor that many who try it for the first time, find the experience a bit shocking.

That is parenting.  You work the soil, plant the seed, tenderly water, and gently remove those weeds that would strangle your precious little seedlings.  One day, those seedlings grow to full-grown plants and they produce a crop that is staggering in its quality.

Having children with a big age spread helps Beautiful and I keep perspective.  Coco is 23 and making plans for a family with his new fiancé.  Thunder is 12 now and has had a fantastic year of highs and lows.  The lows were times where we had to wonder if there was anybody home (as you will with most 12 year olds) and the highs were times where Beautiful and I had to marvel at what a wonderful young man had just appeared in our home.

The reality is that this wonderful new version of Thunder didn’t just appear in our home, and Coco didn’t end up dodging many of life’s difficulties by accident.  By God’s grace, they have received the things young seedlings need to grow.  Working that crop is hard work.  And it takes endurance.  You have to keep working until the plants are ready.  Lapsing for a period of diligent care could be enough to kill your crop.  But, let me assure you as one would-be farmer to another.  When that crop comes in, you will marvel at how you ever had doubts, or times where you were ready to rest.

The choice is really simple.  You can more or less avoid the work and let school, TV and other entertainments raise your children for you, or you can work that soil yourself.  If you are satisfied with supermarket flavor where everything tastes pretty much the same, and none of it is all that moving, that is an option.

For us, Beautiful and I will keep on planting smiles because the harvest is bountiful.  Now, if only I had time to actually garden…

Good days and . . . not so much

Sometimes, it is easy to become short-sighted and forget what is really important.  Today is a great example of that.

Saturday is here!  Family day and project day!  I love Saturdays.  This one began much like the others.  Beautiful and I slept in just a wee bit.  Well, okay, maybe a little too much today.  We did get up at a respectable hour, but children have no concept of the blessing of sleeping in.  Consequently, when we got up, Princess already had her hands full with the little ones and they were taking turns getting out of sorts.

As the day progressed we made it to lunch time and I realized that I had not started one of my projects because we were still busy helping the children regulate.  It seemed as soon as we had one back to peace and happiness, another one would be replaced by some doppleganging alien that was clearly not our child.  I would finish working with one child and would notice, with longing some little task that needed my attention. Those little tasks seemed to call to me, with such sadness that I would neglect them.

Lunch time came and went and it was time for naps.  Ah, Nap time!  “How do I love thee.  Let me count the ways.”  It was by this time that I finally clued into the fact the Lord was teaching us.  All of us.  Yes, sometimes I am a little dense.  No, that is not news to me, but thank you for asking.

Yes, all of the projects that I wanted to do, were important.  However, they are temporal.  All of them will be as though they never happened in another 10 years (that is if I am masterful in them – which is usually beyond me).  These little children that needed my time – they are eternal.  They may not remember the time I spent with them today.  They may not remember the help they received sorting things out with their siblings, playing in the pool, rolling around on the carpet, or the drinks and snacks they were given.  They may not remember the specifics, but each of those little things helped shape who they are.  Each of them helped them see a little bit of their Heavenly Father and how he dotes over us.

I am very blessed indeed.  I wouldn’t trade this day for the world.  My children had a good day.  My projects, not so much.

Suddenly wonderful – A change in perspective makes all the difference

Curly Girly has always loved getting dressed up for the church balls.  At six, she just hasn’t really appreciated the ball itself.  Like most of us, Curly Girly does not like doing things where she is unsure what to do and dancing is complicated. For her, this means that anything new, is usually avoided.  She is traditionally an oberserver until she gains certain amount of confidence in what is happening before she will jump in.  Even then, her participation seems a tentative for a while.

This latest ball was no exception.  She enjoyed getting dressed and spun around the living room with her frilly white dress.  When we arrived, she stayed close to my side.  She hesitantly agreed to dance with her big brother for the grand march.  Then she was back to my side.  She was, as most of the little ones, more interested in the tasty treats at the refreshment table than the actual dancing itself.

Then it happened.  A fine young man from our church came over and asked me if he could dance with Curly Girly.  Suddenly, the ball had all new interest.  Other people were noticing her and it was another opportunity to affirm that she was precious.  She was in heaven on earth!  It didn’t matter anymore if she knew what to do or not.  It didn’t matter any more if the snacks were tasty or not.  She was precious and other people were recognizing it.

This was a great reminder to me of a lot of things (not the least of which is that my girls love to know that they are precious).  One that is often overlooked is how to affect the simple perspective change that will make all the difference for a child.  Something that was only tolerated before became something positively wonderful.

As parents, that is our primary task:  Helping our children understand that they are precious to God and all the good things in this life bear testimony to His love of us.  When viewed from that perspective, God and this beautiful life He has given us becomes suddenly wonderful.

Time with a smile: Priceless

Beautiful has been away with some of the children this week.  It has been great for a number of reasons (not the lest of which is being reminded how hard her job is).

I think the best benefit came this morning.  I sat the on the couch with Bright Eyes next to me.  We were sharing a snack and doing absolutely nothing.  I was debating putting on a show for her, but decided against it.  Not 30 seconds later she gave me the look.  You know the one.  The child locks eyes with you and grins ear to ear. You have no idea what they are really thinking, but you know down to your bones that they are as happy as a child can be at the moment.

Those moments with a smile like that will make a father try to move heaven and earth for another.

There was no need for MasterCard here.  Just some dry cereal and the most precious item of all:  Time.  There is no substitute for time with your children.  Bright Eyes didn’t need to say a word.  She told me clearly enough with that look.  My time with her, was more precious than any thing I could have given.  That was a what she wanted and it was what we both needed.

Parents Rules for Rules

Parents can and should make rules for their household, but many parents I speak with find it unusual that I believe there are rules about making rules.  Everything we do is modeled after our Heavenly Father and is designed to direct our children to Him.  That being the case, we need to model His rule making when we make ours.

Rules need to be:

  1. Knowable – You cannot create rules and not reveal them to your children.  If you are going to chastise them for some behavior or attitude, then you need to make sure you teach to that BEFORE the offense is given.
  2. Predictable – The rules should build in a particular direction that should be built on and consistent with guiding principles (hard work, good stewardship, etc.). Rules that are not consistent with one another or not consistent with the principles are doing a disservice to your children, your household, and your Lord.
  3. Consistent – A rule should be consistently applied, and consistently enforced.  I am guilty of creatively applying exceptions for all of my children.  My older children can do the math to keep up with my thinking here, but the younger ones cannot.  Keep the rules constant for them.  The children will appreciate knowing what to expect, and your wife will appreciate with not having one more thing on her plate (keeping up with a moving target).
  4. Achievable – I know this should go without saying, but sometimes I find, those are the very things that need to be said.  You cannot make rules that your children cannot live up to.  That is simply asking for frustration on everyone’s part and it will ultimately drive them away from you and most likely their Heavenly Father.
  5. Frame Appropriate – The rules you are making should factor in the child’s age / frame.  I do not have rules for Coco (he follows house rules that even guests would follow, but that is it).  Princess is just about completely out of rules as well.  The younger we slide down the family, the less freedom they have.
  6. Minimal – Even for the little ones, the rules you create should be broad and few.  If they are toddling through their day trying to remember the household code of conduct, you are overdoing it by a long shot.  You  are raising unhappy children and are creating unnecessary confrontation with your children.  That is bad from the get-go.  Here is an example of keeping rules broad and few, P.C. loves tools.  He loves my gadgets.  He is four.  He can do a lot of expensive damage to a lot of things (most of all himself).  Rather than a special rule, one broad one that all can enjoy fits the bill: “If it is not yours, don’t touch it without asking.”  Bright-Eyes at two can handle that one and so can everyone else.  No extra rules are necessary to cover P.C.’s particular penchant.

The bottom line is this.   Your children are required to respect and obey you.  Don’t make that harder on them than it has to be.  Our Lord makes respect and obedience a joy.  You need to as well.