My Daughter is Autistic and That is Okay

Recently, someone who had not yet had the pleasure of meeting our daughter asked me to describe her.  We were inquiring about placing her into a playgroup at their facility and they were curious as to how she would operate within the group having, well, autism.  More specifically they wanted to know if she could get along with other children and follow direction from adults.  I explained that while following direction is sometimes hard for her, we have special cues for her that help her stay on track and that she gets along well with other children.  They were hesitant yet glad to hear it of course, and I could not help but feel I was talking about enrolling our furry family member into doggy daycare, instead of our six year old daughter to a playgroup.

As the conversation went on the all too often question finally came of “just how autistic is she.”  We get it all of the time, from those who have fears of just how difficult she will be to work with, to those who meet her and are surprised when she does not quite meet their stigmatic expectations.  I explained that our daughter is considered high functioning and that many times those who do not understand how broad the spectrum is or what they are looking for may not even realize upon meeting her that she in fact has autism.  Before I could continue to explain how this often makes things difficult for her, the person on the other end of the phone exclaimed “oh that’s great,” undeniably satisfied that my daughter’s autism would not get in the way of the happy environment they had created for their other families.  Though the clear attitude received that autism is somehow an insult; to my child, to our family, or to others, made my stomach drop, it is clearly a bigger problem that falls far outside the length of this one phone conversation.

 

1. Autism is not an insult.  More often than not when we explain that our daughter is on the milder end of the spectrum people react as though they are relieved for us, and often themselves, that she may not “appear” as autistic as they originally imagined based off of their often limited views of what autism is.  Although I know this reaction is not meant to harm and is only natural having likely never experienced truly loving someone with autism, the reaction is most unnecessary.  We just don’t view it as a rampant negativity.


2. Autism does not define our child, but it is a part of her.  Our daughter is who she is with or without the label of autism.  She is defined by the light possessed within her very being, not by a disorder.  With that said having autism has shaped how she sees the world and interacts within it.  Being afraid of my daughter’s autism is like saying you are afraid of my daughter, but only you are not looking at all of her, you are only looking at the parts of her you find difficult to relate to and understand.


3. Our daughter needs acceptance in group activities just as much as those group activities need her.  We aren’t placing our differently abled daughter into playgroups at the unfortunate expense of other families.  While it is true that the best way to teach an autistic child social skills is to integrate them with other children, it is also true that the best way to teach typically developing children social acceptance is to integrate them with children who are differently abled.  The best part is that kids are often the last to see these differences in the same light that adults do.  Stop worrying about the negative effect my daughter could have on other children, and start embracing the positive.


4. Telling us she does not seem autistic is not a compliment, although I know it is often offered as one.  As previously mentioned the fact that our daughter has autism is in no way an insult to who she is.  Comments like this one more so go to show that too many have a preconceived notion of what autism is and that it is somehow bothersome that our daughter has been “labeled” with it.

 

Much of the world is still clearly lacking awareness when it comes to such a highly prevalent developmental disorder.  While the current statistics from the CDC are showing 1 in 68 children have been identified with a pervasive developmental disorder, most people still only refer to that one guy they knew back in high school, or the key autistic character on a popular television show.  The spectrum is much broader than you think and since each person also is born with their own personality and family structure it makes each person with autism unique, just like the rest of us without.

Our daughter is autistic and that really is okay.  We, more than anyone, are fully aware of what that means when it comes to her.  We never mind people inquiring, but the approach is often rather off.  It is not her autism that is frightening or hurtful, it is other people’s views of what that diagnosis means for her that is.  I cannot speak for everyone who has a child with autism or different developmental needs, but I can tell you what would be a much better way to approach this situation when it comes to our daughter.

Dear sibling to a child with "specialties": Let me tell you why you're amazing....

Hey there little friend,

I heard you are the sibling to a child with "specialties" and I wanted to write you a letter explaining why you have a one up on life.  I know your life might seem hard or different from your friends, but trust me you most definitely will be more prepared for this life than anyone else walking around this big ole Earth.  Let me explain...

I heard that you deal with more than any child should, like having your parents spend a lot of time away from you.  You know they are taking care of your sibling, possibly bringing him or her to the doctor, maybe your sibling is admitted in the hospital often, they might be on the phone taking care of insurance business, or even physically caring for your sibling constantly.  I know my friend.  You see these happenings more often than not.  You see the love that your parents have for your special sibling and it is being embedded into your heart.  You see the patience they exhibit when caring for him or her and it is being buried into your soul.  You see that your parents never stop trying to get what your sibling needs and it is being ingrained into your mind.  You see your parents exhaust themselves making sure that your sibling and you are well taken care of and loved and you are learning from this.  You may not know it, but all of these "little" things are teaching you traits of how to be an amazing person.

I'm certain that being the sibling to a child with different needs than most is a struggle.  I know you have those moments where your heart stings with jealousy, where you are worried sick over your sibling, or when you get mad because you can't go to all the birthday parties you want to.  All of those times are totally understandable.  You have a right to be upset every now and then, but I can bet that you can think of some pretty cool things that you have in your household that your friends don't.  How about all the cool equipment your sibling has? Huh?  I know you've climbed into that wheelchair or played with his super cool assistive technology toys!  How about getting to see your sibling reach a milestone and that proud feeling that overcomes your body?   You get to experience a friendship that is like no other.  Your sibling completely and utterly trusts and loves you with a love that can penetrate the coldest heart.  They look at you with those beautiful eyes and know that you are there for them no matter what.  The bond you have is indescribable.  You are their sibling, their friend, and their protector.  Your sibling might not be able to speak verbally, but we both know that your hearts together carry on conversations that us adults could never possibly understand.  And I tell you what, we are so extremely jealous.

Did you know that your parents watch you and your siblings interactions on a daily basis and their heart literally wants to burst out of their body with pride and love?  They see everything you do for your brother or sister.  They notice when you walk by and give them a quick kiss, stroke their hair, or give them a hello.  Your mom and dad love to witness you sticking up for your special sibling, or when you go out of your way to make sure he or she is included in everything. They quietly observe you as you help with therapies, put oxygen masks back in place, hold their hand during tests or doctor visits, or wipe their innocent little face.  Your parents recognize every time you perch yourself on the counter to help make medicines or bring them a diaper, a syringe, or whatever else they are calling out to you!  You do such a crazy amazing job helping your parents.  It surely takes a wonderful little boy or girl to do what you do on a daily basis.  I'm sure they tell you thank you, but sometimes if they don't just know THEY ARE BEYOND THANKFUL FOR YOU!

But most important of all, my dear one, the reason you are going to ROCK this life- you know true love, you know true heart ache, and you know what is truly important.  You have lived a life that takes a strong heart and a strong mind.  You will mature much faster than your schoolmates (don't be too hard on them), you'll exhibit compassion that astounds others, you'll know more about healthcare than 95% of adults you pass on the street, and you will most definitely have a wicked sense of humor that will enable you to keep life joyful no matter what!  When you were introduced to your sibling with complex needs for the very first time, that moment in time is pinned in the stars, for it was then that your destiny was determined.  You will be an awesome human being and you are going to change lives for the better....all because you were the sibling of a child with specialties.  Rock on my brave friend!

All my love,

the momma of a child like you and your special sibling

I Loved You Your Whole Life

Like an instinct I knew you were there.  I held onto the small plastic device that would in a near instant be the confirmation I did not need.  I could already feel you burrowing into a place deep beneath my heart, immersing every part of my existence in a new level of love I had never felt before.  I was filled with so many emotions, astonishment working as a mask to cover the fear of the fact that you were not planned.

Like a trance you immediately came over me, the love I felt becoming more powerful by the day.  I had a new strength I did not know existed within me, a will to stand and fight wars of words, to overcome obstacles out of the realms of this world to protect you.  You quickly became the only thing I truly needed, the one thing I did not realize I was missing in this life.  You became my everything.

Like an instant change of course you became my future, the clarity I had never had before.  Every single plan now surrounded you; things I did not even know could be desired for were now my only focus.  My every will to become a better human was to make you proud of the person you would one day call Mom.  I wanted different for you.  I wanted better.

Like a constant motivation you drove me to treat my body like the temple it always should have been.  I had an untamable desire to keep it a perfect place for you to grow.  Every single; bite, step, and hour of sleep carefully calculated to be sure that you would continue to thrive.  If only it could have been that simple.

Like a flash the winsome world that you had created with your presence abruptly turned to shades of grey.  The eight weeks of perfection that had been your life had become endangered by symptoms that were getting worse by the hour and words spoken by carefree doctors in cold emergency rooms. The echo of “threatened abortion,” still haunts me to this day.

Like an instinct I knew when you were gone.  As your heart beat slowed to a stilled silence, so did the parts of me that had any will to keep moving.  A certain death overcame my very being; a pain enough to match the love I once had living deep inside of me, a despair masking any joy I once had.  I could not remember how I even used to breathe before you.

Like a forced sense of self-worth I had to will myself to survive.  The person I had been before you ceased to exist.  You came into this world forever changing me and then left, taking pieces of me with you.  I had to continue with what was left of me, however small those pieces may be.

Like a tattered sailboat drawn to the shore, I came to find my solid ground.  It hurt me to think of what had become of the person I wanted so badly to be for you.  I needed to do better, not only for my own well being, but because to not do so was to openly admit to myself that losing you left me no longer your mother, and that was a thought I simply could not bear.

Like a prayer I carry you inside my heart to this day.  The nine years that have passed without you often seem like an eternity compared to the nine weeks I held you.  The very foundations of the mother I am today are owed to your existence.  Not a day goes by where you are not in my thoughts.  Four children now to fill my arms and I still wonder what it would have been like to hug five.  I know one day we will be reunited, until then I will continue to live on knowing I was blessed to love you your whole life.

Living life with a child who has Epilepsy...

Whether you were told by a doctor that your child would likely suffer from seizures or your child began having seizures unexpectedly, nothing can prepare you for a life with a child who has epilepsy.

When our kids are hungry, we feed them; when they are sick, we give them medicine; when they are crying, we console them- but when your child is seizing there seems like there is nothing you can do about it, but wait it out.  Sure, sometimes we have to give rescue meds, but for all the times when the seizure is a few minutes, or not strong enough to give rescue meds-THAT is when this helpless, awful feeling hovers over us.  We just watch and wait, praying for the end to be near.  This goes against every momma law there is.  It is our natural instinct to protect our children, but epilepsy doesn't care one...little...bit.

I don't know about you, but I was seriously clueless about epilepsy and seizures before my miracle boy was born.  All I had known about seizures was what I had seen on TV or read in books.  Boy, did I get a rude awakening and a lesson in seizures when my son began having seizures at 6 months old.  As my sweetness got older he introduced me to a variety of different types of seizures.  I first met the Tonic Clonic family (and their twins Tonic and Clonic who like to show up multiple times throughout the day), then along came Ms. Atonic (aka Head Drops), not long after Mr. Myoclonic (boy he sure is an aggravating fella too), then Mr. and Mrs. Partial (Mr. Simple and Mrs. Complex that is..).  I was so overwhelmed meeting all of these seizures and learning their crazy personalities.  They like to take turns visiting, but sometimes it's just a big ole party where they all want to attend.  So not my kind of party.

Caring for a child who lives with seizures day in and day out is mentally and emotionally exhausting.  You live with heart ache.  You live in fear waiting for the next seizure.  You live a life that feels lonely and alone.  Sure, you might have friends that understand your journey, but it is extremely rare to have someone TRULY get it.  Even in your own family, surrounded by a crowd of people who love you, you feel singled out.   You live a life of anxiety waiting for the next seizure, you live a life learning how to phrase your child's seizure over the phone so that the neurology nurse can picture it, you live a life full of doctor's appointments, EEG's (and how to get that nasty glue out of their hair), anti-seizure medicines, and researching ways to help your child.  It is a life that we didn't ask for, but it's a life that we take on gladly to help our child.

Though raising a child with epilepsy is hard, it isn't about us.  It is about our sweet miracle child that endures these electrical brain storms.  Making their life enjoyable is our life's mission.  Aggravating the neurology office on a weekly (sometimes daily) basis for answers, pleading with them for another VEEG, begging to try a new med, or even the calls where we just cry in defeat, it is what we do....for our child.  Watching your child digress developmentally from seizures is not acceptable.  The momma bear in us comes out and fights her way to finding an answer, a solution to the problem that is epilepsy.  And then we momma's are hit with the reality that epilepsy is a killer.  It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents.  This fact hits us hard because if this hasn't happened to us personally, we know someone from our support groups on social media who has.  We cry in fear of our child being taken by the epilepsy monster and we cry for others who long to hold their child again.

Epilepsy is real. Epilepsy is life changing. Epilepsy takes lives every single day.

November is National Epilepsy Awareness Month, I want to leave you with these facts (from epilepsy.com)

-Anyone can develop Epilepsy, at any point in their life.

-Epilepsy is not contagious.

- Epilepsy is NOT rare. There are more than twice as many people with epilepsy in the US as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined.

-You can die from epilepsy.

-Epilepsy research is GREATLY underfunded.

-Epilepsy DOES NOT define a person.  Most people with epilepsy CAN DO the same things that people without epilepsy can do.

Seizure first aid is so important, please take a moment to review this poster from the Epilepsy Foundation.  You never know when you might need this vital information.  And PLEASE help spread Epilepsy Awareness!

 

50 Pounds of Mashed Potatoes

Today is 11/12... three days after the Night of a Thousand Stars, special dinner-dance we have as an annual event for people in our community with challenges, their families and caregivers. Once again, it was a pretty successful evening. Although it was raining outside, the room was filled with sunshine and warmth.

On Friday we had an orientation for our volunteers, after which, we begin setting up and decorating. This time we were able to have all things completed by about 9 pm. The list of volunteers was filled with people of all ages and backgrounds. There were JROTC cadets, National Honor Society members, civic groups and some people with disabilities who wanted to volunteer, rather than attend. The most touching moment came when a lady walked in with a bunch of little ones aging about 6-12 marching behind her. They announced they were there to help- and the did. They all went straight to work, putting on chair covers, putting luminaries up the stairs of the stage and helping to put on table clothes and lay out napkins. I asked the obvious, where did they came from and how did they know we needed help? It seems that one of the churches sending volunteers sponsors a cottage where these kids who are in the foster care system. They thought that the idea of them helping others would be a good project. The kids asked questions, worked hard and left knowing that they would not see any of their hard work in action. I made a note to myself that after everything was done, these kids had a pizza and ice cream party coming their way!

A few weeks before, I had gone into a local restaurant and asked if I could get a discount on 50 lbs of mashed potatoes. I was asked to wait while they got the chef. By the time he reached me he knew that I was there to ask for something. He reached out his hand and said hello, then had the amazingly warm look on his face. He said, "What do you need?" I answered, "we would like to purchase 50 lbs of mashed potatoes for our dance and, if we could get a discounted price that would help even more." His eyes met my serious face and then he gave me this big smile and said, "You got it! What else do you need?" I told him that was it and I walked out with this incredible feeling of warmth because a man I never met, just gave us 50 lbs of mashed potatoes to help make the evening great for our guests!

This was only one of many good deeds from the community. I can't help but think that there was so much more in that evening then just providing a special event for some very special people. It was an awesome chance to see many diversities at work in a happy and loving way. We had a very well known local weatherman come in a greet our guests, the mascot of our Tampa Bay Rays, Raymond made an appearance, dancing with our guests and taking selfies with them, the lady "pirates" of the local Krewe came to visit. Before leaving weatherman Denis told me we could count on him again next year. The Krewe hugged and kisses us all and even offered to do a fundraiser for us next year. I had already been told that we could count on Raymond's visit as long as we had our dance.

Next year, we need to find a bigger place. We had to turn away about 30 people because we were filled to capacity. We are already searching and hoping to find that perfect venue.

The reason for a piggy back blog about the Night of a Thousand Stars Event this month, for me, is to just give you all the chance to hear about how special and unique our kids are and what incredible things they are able to bring and accomplish. So many of my volunteer's hearts were touched by the joy, happiness and laughter within that room. What is so wonderful is that it is so easy. You share your caring and you get back huge amounts of gratification and joy! I cannot wait until next year! P.S. As of yesterday, 11/11/2014, we have established our non-profit Night of a Thousand Stars Foundation, Inc. It is our hope that we are able to not only bring this very special event to our area but increase our Foundation to offer, advocacy, education, awareness, information and events not only relevant the special needs community but, to to promote togetherness for everyone!

My real blog post

This past weekend we went to my brother in law's 30th birthday party, and while standing in their kitchen I happened to notice their calendar.  It had two things on it for the entire month.  I stood in awe and amazement and perhaps a little bit of jealousy.  What I would give to only have two things on our calendar.  We have two calendars just to keep track of everything.  Our lives have become a hectic semi-organized litany of doctors appointments, OT/ST/PT therapy sessions, phone calls to medical equipment suppliers, coordination of services, driving to/from daycare and grandma's house, etc etc etc.  Throw on top of that doctor's appointments for me (with my own health issues), working full time, laundry, cleaning, cooking, dishes, grocery shopping, taking care of the house, picking up prescriptions, and trying to maintain a healthy relationship with my husband, and there are times that I don't stop moving until my head hits the pillow at night.  I do have to say that my husband helps out a TON with the housework, cooking, and cleaning, and I am very blessed to have him so I'm not doing it all alone.  Even so, I wake up in the morning completely tired, drained, and just plain exhausted.

I think sometimes its so easy for us to get caught up in the day to day activities of caring for our miracles that we forget to take care of ourselves.  We are so busy, crazy busy, that by the end of the day we are too tired to think about doing anything for us.  I think that's when the problems start to creep in.  We just go through the motions of daily life but don't really LIVE it.  Burnout, exhaustion, and functioning on auto-pilot.  Caregiver burnout is a very real thing, and should be taken as seriously as any other health issue.  Taking care of a miracle (depending on their medical situation) can be a full time job for several people put together.  Sometimes we try to take all of that on ourselves.  We have to remember we are human too, and can only do so much.  If we just go, go, go without a break, we will reach the point where someone needs to take care of us.   Sometimes, we need help.

 

And I think that's where I am.  My daughter is coming up on her 3rd birthday in December.  We have started the transition from Early Intervention over to the school district.  Meetings and paperwork abound.  We just switched formulas again, but she won't drink the new one either.  I count every calorie, every ounce she gains or loses.  Winter is coming upon us and I am nervous, will she be as sick as she was last year?  Will I miss as much work?  I am in a new job that is much more demanding of my time and energy, but we need the money so I have to do well.  My doctors are changing some of my medications around, and although I know that the end result will help me better, the change itself is always difficult.  My car is falling apart.  Money is tight.  Bills are everywhere.  My stress level is through the roof.  On top of all that, my husband and I started fighting.  A lot.  For years, 95% of our conversations have been about Elizabeth, and somewhere along the way we lost the ability to communicate about anything else without  a fight ensuing.  We have been so focused on our daughter that everything else went by the wayside.  We are now in couples therapy to work on our communication skills, and to try to learn healthy ways of dealing with the stress level in our lives.

 

So I guess the point of my rant is this:  so many times I read blog posts that are uplifting, encouraging, positive, optimistic.  Sometimes when I read those posts I feel like there's something wrong with me because I don't feel that way too.  Like, am I the only one who gets exhausted and discouraged and depressed?  Am I the only one who cries in the shower because that's where I can get 5 minutes alone?  I don't think I am ... so I wanted to do a different blog post and talk about how hard this can be sometimes.  How much other people just don't get it.  How stressed we are, how tired we are.  How overwhelming this journey can become.  How we acknowledge the strength it takes to be a MOM, but sometimes we just get so tired of having to be strong.  We want to relinquish our superhero status sometimes.  And how important I think it is that we acknowledge that.  The lives we live are not easy.

 

But at the same time, I want to stress how important it is to take care of yourself.  So often we put our children first and make sure their needs are met (as any MOM does). But in doing so, are we putting ourselves into burnout mode?  We need to occasionally take time for ourselves, and take time for our marriages/relationships.  What good am I to my daughter if I'm falling apart and exhausted?  What good are we to Elizabeth if we are fighting?  I have to put myself first sometimes so that I am able to be a better parent to her and a better wife to my husband.  We have to put our marriage first so that we can be loving, kind, attentive parents to Elizabeth.  Much easier said than done.  Although my husband and I are making a concerted effort to make time for just the two of us, and we are going to couples therapy, I have a much harder time taking care of me individually.  I am trying, though.  I go and get my nails done once a month.  A few weeks ago I got my haircut (first time in a year).  A little bit of "me" time.  I make sure I can make it to my own doctors appointments.  That's really it.  I know there is more to it than that, and I am working on taking care of me, so I can better take care of her.  I think we are all working on that.  But it's hard, it's really hard.

 

[caption id="attachment_6783" align="alignleft" width="224"] Me and my miracle, cuddling by the campfire one night when I was just terribly overwhelmed with it all, and burying my face in her hugs was all I could manage to do.[/caption]

 

So this blog post may not be uplifting, or optimistic, or enlightening.  It may not teach you anything new.  But this blog post is real, this is from my heart.  I want to acknowledge to all the MOMs out there how hard this journey is.  I have had a very rough couple of months, and I wanted to write this to let you know that you are not alone.  We all struggle, we all cry, we all are overwhelmed.  We all go through good phases and bad.  We get tired of being strong all the time, it's exhausting.  Never think you are alone.  You are surrounded by an army of MOMs who can relate to what you're going through.  Try to take some time for yourself, if you can, even if its 5 minutes a day.  Take some time for the relationships in your life so they don't disintegrate.  Recognize that its ok to have bad days, or bad weeks, but remember that it won't stay that way.  The one good thing about life is that it is always changing, so the bad we have today may be gone tomorrow.  Above all remember to take care of YOU, so that you can be the best possible MOM to your miracle.

 

And for all you MOMs having a rough time, I am sending love and hugs your way ...

Magical Places

Let me tell you about 2 magical places here in Florida. I live about 1 hour and 20 minutes from Orlando, the home of Disney, Universal, not far from Legoland and so much more. For many of our kids, these parks are merely a dream because of the difficulty and expense a trip like this would cause but there is a way for them and their families to experience the dream!.

I have been made aware of 2 awesome, magical places in Orlando that are there strictly to make sure our kids have a time they only dreamed about. The first is called Sunshine Foundation's Dream Village. Here amongst the hustle and bustle of the city is a place where our special kids and their families can come to spend a week going to theme parks and, at each day's end, they will come back to one of nine villas, designed to accommodate the entire immediately family right on the Dream Village property. These invitations are "all expenses paid" vacations and the answer to dreams of Mickey and Minnie, hot dogs and cotton candy and all things magical. The limitations are listed on the web site, Sunshine Dream Village is only available to those from somewhere in the USA. If you are interested here is the web site where you can get further information


The other place is actually in Kissemmee, Florida, a hop, skip and a jump to Disney and all the attractions in Orlando. It is called, Give Kids The World. When checking out the website, make sure to check out the story of how this awesome place began.


My husband, daughter (who has CP) and I are volunteers there. We had to go through a background check and, 2 hours of informational training. GKTW has 70 villas on premises, it accepts families from all over the world and pays all expenses, including: plane tickets, rental cars, all housing expenses one of the 70 - 6 person villas, assuring that the entire family will be able to enjoy this respite from therapies, sickness and simply have the chance to enjoy being a family together. The premises are truly magical. I can't remember it all but, there is a train that goes around the village, a pool, a pirate ship, castle, 2 restaurants, a cookie truck that goes around giving out cookies, many times there is special entertainment, a theater and so much more...and, most important, ice cream anytime you want it, even for breakfast...and a snoring tree!! Accessible buses pick the guests up and bring them to the park of their choice. In the late afternoon or evening, the guests return to GKTW from their day of fun upon their return, GKTW keeps everyone busy with special entertainment and fun things to do. There is even one designated evening which is called Parents Night Out, the volunteers provide a fun evening for the kids so that the parents can enjoy some very much needed quiet time usually GKTW provides discounts or gift cards for free dinners in Orlando.


No one can apply directly to GKTW for a visit, you must apply through and be recommended by one of the many agencies that works with GKTW, such as, Make-A-Wish or Dream Foundation. In total, applications are accepted from over 70 agencies both here and abroad. If you need to find one of the agencies, contact GKTW and they will lead you to the connection.


Please look at this information and give your child a dream to enjoy and, your family the chance to spend time together without having to be on schedule, going to doctor's appointments or brace fittings. A chance to be like every other family on a vacation together.

When I had my orientation to be a volunteer, our trainer said, "Welcome to GKTW, this is a place where you leave all your troubles outside the gate and it is your choice if you want to pick them up on the way out or remember the time you spend here and it will change your life!" That statement was meant for the volunteers and, also for the guest families.