Disability Awareness During The Holidays

Being a parent of a child who is differently-abled has its challenges, but one of the biggest challenges we encounter is how our daughter is accepted into the community. Since this is a time of year when many of us are out shopping and meeting new people, I thought it would be a good idea to share appropriate ways to deal with those sometimes awkward situations:

1. If you see your own child staring at another child or adult with a disability, please do not pull them away and reinforce the scary thoughts your child may be having. Take that chance to lean down and explain that the other person is just made differently, but he/she probably likes some of the same things you do. Please encourage your child to say “Hi!” You have no idea how much a simple hello means to our children and loved ones.  
2. If appropriate, encourage your child if they have a question. Most children will not ask invasive questions, but may want to know why that person is in a wheelchair or why they use a machine to talk. Your child will learn something AND feel more comfortable.
3. I can’t say it enough: SAY HELLO! So many adults and children with disabilities spend a great deal of their time being avoided or ignored; a simple acknowledgement is all they want and again, you and those with you will feel more comfortable.
4. Disability is NOT contagious. You and your loved ones cannot catch disability. Remind your children of this because they may be frightened of this idea. Remember, your children are always watching you so if you refuse to get in line behind the person with Down Syndrome, you will be showing your child that there is something to be afraid of.
5. You may encounter a child or adult who is not behaving their age. Many people with intellectual disabilities look typical, but behave differently. I recently took my adult daughter with autism to Build-a-Bear. She had saved for several weeks to earn the money to buy a new bear. It was a Saturday afternoon in Build a Bear and the store was filled with lots of preschoolers and young elementary children and there stood my daughter waiting just as anxiously to fill her new bear. The only people who spoke to her (or us) the whole time were the employees. Again, the simple “Hello!” is perfect.
6. People of all abilities work in the service industry. Many are working in your grocery story, your favorite breakfast spot or even your pizzeria. When you encounter someone that might be slower or a bit socially awkward, please show patience. Yes, I know we all lead very busy lives. We are all rushing from one place to another, but if this particular encounter takes you an extra 3 minutes, what is 3 minutes in the big scheme of things? Unless you are a neurosurgeon rushing into the ER, but grabbing an espresso before your big brain surgery, you really do have an extra few minutes. If you have an extra two minutes, stop and compliment a manager for having a diverse work environment! All people including those with disabilities need and want to become productive members in society.
7. While it is ok to ask questions like, “Why does he use a computer to talk?” it is not appropriate to inquire about a diagnosis. Children do not generally ask for medical information anyway, but the adults with them do! It’s not appropriate! Unless you are this person’s doctor/nurse/medical professional, it is none of your business.
8. If the person with the disability or their escort offers additional information like a diagnosis, your unsolicited advice is not welcome. We as parents of children with special needs get loads of advice from doctors, specialists, therapists, teachers, counselors, etc. Your cousin’s neighbor’s nephew’s son who once met a child with a similar disability to our child’s is of no interest to us. Believe me, special needs parents have better research skills than the CIA and FBI COMBINED.
9. After meeting a person who is differently-abled than you and your child it is probably a good idea to sit down with your child and allow them to ask questions. You may want to stop at your local library and get a few books. I would suggest “What’s Wrong With Timmy?” by Maria Shriver, “Wonder” by R.J. Palacio or “My Brother Sammy is Special” by Becky Edwards. I am also sure your librarian can recommend some perfect books for your child’s age.
10. Lastly, it is important to TALK about different abilities with your children. We are all as different as snowflakes. When every child understands that different is a good thing, we will have a more inclusive and accepting society for everyone.

One more very important thing: the word “retard” is NEVER socially acceptable. This word has been removed from diagnostic language, but lingers since it is used as “slang”. What used to be referred to as Mental Retardation is now known as Intellectual Disability. Please avoid using the r-word and help your children understand how offensive this word can be to people who are or have a loved one with a disability. Spread the word to end the word!

 

10 Things Typical Parents should know about Special Needs Parents

When your child is diagnosed with a disability, it is life changing.  You may already have known something wasn’t quite right before the diagnosis, but receiving that official “label” is life changing.  What we imagined our life to be and what our reality is is quite different.  I have spoken to many parents who have received their child’s diagnosis and although they suspected it, the news was devastating.  Before the “label” we could live in a fantasy world that allowed us to believe that maybe he/she just simply speech delayed.  We convince ourselves that certain behaviors are really just the terrible twos.  When we observe regression, we tell ourselves they weren’t really doing that skill 100% of the time anyway.  The diagnosis makes it real.

Over the years, I have heard many well-meaning comments from typical parents: “Oh, you should try using time-out.”  Um, doesn’t work.  “I saw online that there is a holistic doctor that does chelation that cures autism.”  Tried it.  She’s still autistic.  “My brother’s co-worker’s cousin has a son with autism.  You should totally talk to them!”  Um, no thanks.

I don’t think people say things to be hurtful; they simply just don’t know.  Unless you have a child with a disability, it is very difficult to understand.  Here are 10 things you should know about parenting a child of special needs.  

10 Things Typical Parents should know about Special Needs Parents

1. We do not want your pity. When your friend shares their experience of parenting their child with special needs they are not looking for you to feel sorry for them. They are also not looking for you to solve their problem.  They are looking for a friend.  Someone who can say, “Wow that sounds like a rough day!  Anything I can do to help?”  This is no different than when you share that your son broke his arm.  Do you expect your friend to feel sorry for you?
2. We get more advice than you can possibly imagine; we likely do not need your advice. Many well meaning friends want to share how their neighbor’s nephew’s neighbor has the same disability and they saw Dr. X and he is now cured. Most parents of special needs kids are very well informed about their child’s disability.  They stay up all hours of the night researching new therapies and studies.  They are likely well aware of any therapy that claims to “cure” their child’s issues.
3. We worry all the time. The difference biggest difference between parenting a typical child vs. parenting a special needs child is that you never stop parenting your special needs child. Our kids will likely need some degree parental support throughout their lifetime.  Our biggest worry is, “Who will care for my child after I am gone?”  This is a constant worry and does not go away.  They also worry about inclusion, education, socialization, etc.  The worry list is LONG.
4. We celebrate our child’s accomplishments no matter how big or small they may be. Many of have been so scared to believe in our child’s potential and when our children do reach huge milestones, we want to celebrate BIG.  We might throw amazing birthday parties for our medically fragile kids just to celebrate the fact that there are on this earth for another year.
5. We are not Superman or Superwoman. PLEASE do not say we are amazing and you could never do what we do.  I assure you, if your child was diagnosed with a disability, you would move heaven and earth to help your child reach their potential.  We are like any other parent; our kids are the ones that are amazing superheroes!
6. We are more educated about our child’s disability or issues than any doctor, teacher or therapist. We spend hours on the internet researching. We join support groups to learn from other parents of special needs kids.
7. We sometimes find it difficult to sympathize with other parent’s concerns about their typical healthy children. I have heard many people comment how most of my friends are parents of special needs kids.  It is not because we all got together and decided to form a clique; it is because we get it.
8. We over plan for every scenario. We create a plan A, B & C with the option to throw in the towel and go home at any time. This is especially challenging for parents of children with mobility issues.  They have to make sure every area of every place they take their child will be accessible and accommodate their needs.  So when you think your friend doesn’t want to socialize or has become a bit of a hermit, it is usually because planning to leave is so much harder than staying home and watching Netflix!
9. We feel guilty. We constantly second guess ourselves. We feel guilt over that one therapy or medication we chose not to try.  We feel guilty that our typical children have to deal with issues that most of their peers will never have to learn about.  We feel guilty that our spouses feel neglected.  We feel guilty that cleaning the house is the lowest priority.
10. We are mama and papa bears that will go to the ends of the earth to protect our children.  We will fight for inclusion.  We will advocate for our children’s needs.  We will raise awareness about our child’s disability.

One very important piece of advice, please do not use the r-word.  This word alone cuts us to the core.  Many people say, “It’s only a word.”  Well, this one word is offensive to anyone in the disability community.  So offensive, that it has been removed from diagnostic criteria.  What used to be referred to as “mental retardation” is now “intellectually disabled”.  For more information on the campaign to Spread the Word to End the Word, please visit www.r-word.org .

If you have anything to add, please comment below!

Shopping Gone Awry!

To say Katie is simply a shopper is really underestimating her skills.  When Katie first began learning about money, she very quickly realized everything had a dollar value and her money could buy everything her heart desired.  This has become a problem at times.

We have had a few “incidents” over the years with regard to Katie’s shopping.  When she was very young, probably 6-7, she placed an order on Amazon because I had “one-click” turned on.  It turned out to be a couple of toys and I turned off “one-click” and talked to her about asking permission.

We now have Amazon Prime and because I, too, keep a lot of things in that online cart, I am always signed in.  Well, that was a bad idea.  Earlier this year, Katie went on an Amazon and Ebay shopping spree.  I didn’t realize it until the morning after she had clicked “pay now” when I began receiving shipping confirmations.  In all, she spent about $1000 during her little “spree”.  To say I was mad is really an understatement.

Knowing I had Prime helped because I could easily just return those items, but Ebay isn’t like that!  On Ebay, Katie had purchased 2 Simpsons Lego sets: 1 set was $250 and 1 was $300!  She had also purchased a swimsuit, some books and a used stuffed animal.  I messaged each seller and explained that my daughter had autism and had placed these orders without permission.  Each and every seller I contacted immediately cancelled the orders and refunded my account ASAP!

The Amazon Order Arrives!

The Amazon purchases arrived all on one day.  I had to open each package, inventory and then print out the Amazon return labels.  My kitchen looked like an Amazon sorting facility.

Two of the many boxes from Amazon.

After this happened, I sat Katie down and explained some new rules.  We would chose two days a month that she could place orders.  She would collect her paychecks and save them up until those days.  She could then shop on those two days, BUT could not place an order without checking with me first!  I changed all my passwords for my accounts so she could not sign in and shop anyway; I was not going though this again!  I taped two notes to my laptop screen with one for Katie saying “If I want to purchase something online, I must ask mom first.  If I buy something online without asking, mom will take my Ipad for 1 week.”   The other note is for me saying simply “SIGN OUT!”  We have only had one “incident” where I didn’t sign out of Amazon and she ordered 6 bottles of bubble bath.  Yes, 6.  Oh, and set them up on auto-ship so we would get 6 bottles of Mr. Bubble every month.  That week without her Ipad was pretty rough, but I think a valuable lesson was learned.

Katie keeps items in the Amazon shopping cart and monitors that cart daily.  She also keeps items in her Hot Topic and Target carts.  When her shopping day arrives, she is pretty excited and will ask me what time she can place her order.  This is usually a great day where I can say, “as soon as your room is clean we can place that order!”.

The Cat-napper!

Katie has always loved cats and kittens.  Unfortunately, too many people in our family and several friends are severely allergic.  My brother is so allergic to cats that he will stop breathing.  So, if I ever want my brother to visit my home, we cannot have a cat.

Knowing that people are allergic to cats has not deterred Katie from trying to possess a cat.  If we visit a friend’s house and they have a cat, she will immediately gravitate to the cat and hold and cuddle it for as long as the cat will tolerate.  In fact, many people who said “Our cat isn’t very friendly” have been surprised at how their cat will allow itself to be loved and cuddled by Katie.

We live in a development of cul-du-sacs and Katie has always had the freedom to ride her bike in our neighborhood as long as I could see her.  Several years ago when Katie was maybe 8-9 she walked into the house after one of her bike rides wearing a back-pack.  This was not normal and immediately triggered me to check the back-pack.  I slid it off her back and felt the weight.  I knew immediately something wasn’t right.  Holding the back-pack, I walked back outside with Katie following me and slowly opened the zipper.

Inside the back-pack snug as a bug in a rug was a cat.  Yes, a cat.  I began asking Katie where she got this cat and her reply was, “Katie’s house”.  I reminded her we did not own a cat!  She insisted.  I walked around our yard and pointed to neighbor’s houses and she continued to insist, “Katie’s house!”  I finally realized a house in the cul-du-sac behind us had a little girl about a year older than Katie and her name was, in fact, Katie.  I had found the cat’s house.

I called for Jake to come with us somehow knowing I was gonna need back-up.  I marched down to their house to return their beloved pet.  I knocked.  No one answered.  I turned to Katie and asked how she had gotten the cat since they were not home.  She led me to the side door of their garage and opened it.  I then knew Jake was gonna have to be an accomplice.  I asked him to please stay in the driveway and be a look-out.  I am unsure now what I expected him to do if they came home, but at the time I was desperate.

Katie and I entered the garage and then the house.  She took the cat and placed it back where she had found it and we walked out the way we came.

Katie is now 20 and still loves cats.  She hasn’t attempted to sneak a cat into the house since this particular incident, but does take ever attempt to love on any cat or kitten she comes across.  One day, many years from now, when my girl is living independently, I believe she will have cats.  Many cats.  Uncle Jim won’t be able to visit, but I think that is a sacrifice she will be willing to make.  

 

What I have Learned

I have found a great deal of patience and perspective parenting a child with different needs.  Katie has taught me more about life in the last 20 years than I had learned in the 25 years leading up to her birth. 

She has taught me about acceptance.  I have learned to accept myself for who I am and what I am able to do.  I am more open and willing to accept others.

She has taught me patience.  From the moment she was delivered (17 minutes after her twin), I knew this girl was going to do things on her terms.  All things I imagined she would never do she has done; just not in my time-frame.  She does things on her terms and that’s ok.

She has taught me that there is no such thing as normal.  Normal is a setting on a dryer; not a person!  And when I look around at other people’s lives, I realize everyone has struggles.  The neighbor or co-worker you might think has a perfect life, might be dealing with a personal crisis at home.  That friend who always has their life perfectly organized might be doing that simply because they want to be able to control something in their lives.  

She has taught me about joy.  Katie’ experiences things with her whole body and is 100% present in the moment.  Watching her experience joy is the most amazing experience and is one of the greatest things about parenting Katie.  

She has shown me what self-esteem is.  Katie is 100% comfortable in her skin.  She chooses her clothes, her hairstyle and her make-up to please only herself.  She is not worried about what others think or if someone will judge her.  She dresses to make herself happy.  I think we could all take a page from that book! 

She has taught me to not be (as) judgemental.  She does not judge people based on their color of their skin, what they are wearing or how they look.  She is friends with people of all races, colors and creeds and only cares about what their favorite song is and if they have seen Home Alone.

I am not a perfect parent.  I am a flawed person.  I sometimes judge others.  I worry even when I know worrying will not change the outcome.  These are all things that make me a work in progress.

Being Katie’s mom has changed me.  Katie has taught me more than any teacher, therapist or minister. The last 20 years have been filled with twists and turns.  This was never the journey I planned.  But knowing what I  know now, I know I am changed for the better.

 

 

IEP, 504, ETR – OH MY!

In 2001 when we first learned that Katie had autism, I was anything but an advocate.  What I knew about autism was ignorantly based on the movie Rainman.  After receiving the diagnosis, we were warned off going on the internet.  Unfortunately, that was the first thing I did.  I had no idea how to weed through what I was reading to find what I needed to know.

When Katie was evaluated by our public school’s early intervention preschool, I was surprised at how clinical and direct the psychiatrist and those evaluating our daughter were.  It all was so harsh and frightening.  I would go to these meetings alone.  There would be a school psychiatrist, speech therapist, occupational therapist, administrator, classroom teacher and me.  The meetings always felt very “one-sided” and I didn’t understand how to advocate for Katie.  In later years, I began making sure meetings were scheduled so that my husband could attend.  I also brought a friend that was a  special education teachers in another district and another friend that was a social worker.  I asked everyone to use their voice during the meeting!  This definitely changed the dynamic and made the meeting more “balanced”.

It is my belief that most teachers and therapists have an invested interest in our children and do care about them.  The problem is that when an administrator is in the room and a teacher is aware of constant “budget rumblings” within a district, a teacher will be hesitant to advocate for a therapy or service that will cost the district additional funds.  The administrators job in the meeting is to make sure that all follow the law, but, I believe, they are always thinking about the bottom line.

Because of the number of people the school has in the meeting, a parent can easily feel intimidated and less willing to strongly advocate for their child simply because they are outnumbered and intimidated.

Here are some strategies that I have used over the years to help keep the meeting centered on Katie’s needs and how to best help her reach her potential.

1. Communication.  When you receive your invitation to attend a 504 planning,  Individualized Education Plan (IEP) or Evaluation Team Report (ETR) meeting, respond to your case manager and ask to discuss your child’s needs BEFORE the meeting.  If you have areas of concern, it is best to get them out on the table as the planning for the meeting takes place.  Work directly with your child’s case manager to discuss possible goals and objectives that might work for your child.  There are also plenty of websites out there that offer goals that you can read through and modify based on your child’s needs.  Remember, YOU are a member of this team and have equal input.  
2. Documentation.  I keep a binder with tabs for current IEP and previous year’s IEP, Progress Reports, ETR, Concerns (homework or tests that raise a need for services) and miscellaneous.  Save every email you send and receive in a folder in your email.  Save all communication with teachers, case manager, therapists, administrators, etc.  You will be surprised at how often you will catch a “mistake” if you keep all communication.  Bring this binder to all meetings along with any other supporting documentation you might need.  When asking for a service or therapy the district will likely not agree with, bring research studies supporting those services and therapies.  This past summer, I was asking the district to bring in a behaviorist to evaluate and plan for the school year.  The district was fighting me so I went onto my son’s college library site and found study after study supporting a behavioral approach.  It is hard for a district to argue with proven documentation and studies.
3. Evalutions and 504 or IEP Draft.  You have the right to receive all evaluations and/or drafts well in advance of the meeting.  If this cannot be provided, you then have the right to request that the meeting be postponed so that you have the appropriate amount of time to review everything before the meeting.
4. Appropriate & Necessary.  At the meetings, do not use the words “I want”.  Your wants, needs and desires are set aside during the meeting and you must use the language “necessary and appropriate”.  Example: Based on Suzie’s recent speech evaluation that showed regression, it would be necessary appropriate to provide her with Extended School Year (ESY).  Leave your emotions at the door.
5. Attendance.  You must do everything you can to attend all meetings related to your child.  If you are not in attendance, the meeting WILL take place without you and your opinion will not matter.  A close friend was recently in the middle of her chemo treatments and was afraid to enter a school building during the height of flu season.  She arranged to be on a conference call for the whole meeting so that she could fully participate.  
6. Documentation.  The district will likely have one person designated to take copious notes during the meetings.  Since you will be actively participating in the meeting, it will be difficult to take your own notes.  You could choose to bring a friend or family member along to take notes.  You could also ask for a Parent Mentor for your district to attend the meeting and take notes for you.  The easiest way I have found to solve this problem is to audio record the meeting.  If at the beginning of the meeting you announce you plan to record it, your district should have no problem and will likely choose to audio record the meeting also.  I downloaded an app to my phone called Voice Record Pro that allows me to record the meeting and then transfer the file to my hard drive.
7. Consent.  At some point during the meeting, everyone in the room will be asked to sign a form to state they were in attendance at the meeting.  At the close of the meeting, you will be asked to sign a consent form to implement the IEP.  You are not required to sign that form during the meeting.  You can choose to take the IEP home and review it and decide if you are in full agreement.
8. Follow-up.  After the meeting, it is important to follow-up with all in attendance regarding any concerns that arose during the meeting.  You may also request a follow-up meeting.

Remember, you know your child better than anyone in that room.  You are your child’s “voice” and are responsible for consistently reminding your school district that you will make sure your child’s needs are met.

 

 

 

 

More than Twins

There are many challenges parents of special needs children face and one of the hardest is balance – how do you balance the needs of your typical AND special needs child?  It is nearly impossible.  Yet the sibling of a special needs child has to try and navigate something that is difficult for most adults.  They grow up faster.

After Katie was diagnosed at 2 1/2, she began weekly speech and occupational therapy.  Jake, of course, was right there with me.  It was nice at times because it was 1/2 hour of 1 on 1 time for just him and me.  When Katie began attending an early intervention preschool, Jake went to that school as a typical peer model.  They started Kindergarten together and we were able to keep them in the same classroom through third grade.  I was nervous when they were first separated, but quickly realized they both needed their independence and identity; especially Jake!

Once they got to middle and high school they rarely saw each other during the school day, but I think for Kate it was comforting to know Jake was always around.  I know now from conversations with Jake that it was sometimes challenging for him.  He adores Katie, but like most siblings he didn’t want to be defined by her.  She was a cheerleader.  He was a gymnast at a club and then a diver on the school’s team.  She listens only to pop music.  He listens to anything BUT pop music.  Yet they still share a very special bond.

Jake was asked many times over the years to come into a classroom where Katie was to “translate” for her.  While not necessarily appropriate, he would pop into the room and explain what Katie was talking about (usually she was scripting a movie).  If Katie saw Jake at school in a hallway or lunch room, she would immediately yell his name and hug him or give him one of her own silly smiles.  I do believe they are each other’s best friend though their friendship is not typical.

There were times that we realized Jake needed time away from Katie.  He joined a gymnastics team that had him practicing 16-20 hours a week and none of his teammates were from our school.  This allowed Jake to be something other than “Katie’s twin” or “the brother of that autistic girl” and I think it was good for him.  Many of his teammates became friends with Katie, too; one of them even asked to be her date at prom!

Last year, Jake left for his freshman year of college.  He is a diver on his school’s team and we knew, because of practice, he would rarely be able come home.  I spent hours worrying about how Katie would handle this separation from her twin.  As usual, I was completely surprised.  When Roy and I came home after getting Jake moved in, Katie asked a few questions about when Jake would be home next (Thanksgiving & Christmas for sure) and when she would talk to him (every Wednesday they would Facetime).  She accepted everything and handled it without getting upset!  She knew where he was, when he would be home for sure and that she could still talk to him.  Everything was ok.

She and I took a ride up to his school about 6 weeks after he left.  As we arrived on campus, she got more and more excited.  We scheduled our arrival to be right when he would get out of practice. As we pulled up to the the rec center, I saw a boy walking out the door and Katie immediately began yelling, “I see Bubby!” (Bubby is her nickname for Jake).  As soon as I parked the car, she jumped out and RAN to him, threw herself into his arms and embraced him.  I kick myself now that I didn’t grab my phone and take a pic, but I was watching this in awe.

Jake left last month for his Sophomore year of college.  We left early that day to drive up to his campus, but he made sure to go into her room and give her one last hug before he left.  I know now, wherever they are, they will always be best friends.

One last hug before he leaves.

Vacation…

We decided to take a vacation this fall.  Originally, we wanted to go over the summer when my son, Jake, was home from college, but Jake was working and attempting to bank some money for the school year and we decided to do this in the fall when he was back at school and Katie had a long weekend off from school.  Jake would be at school and with his diving practice, he would be unable to take time off for vacation.  Anyway, planning a vacation with a child or adult that has autism is probably similar to how NASA plans for a shuttle launch.  Every scenario must be planned for and thought out.  Plan A, Plan B and Plan C must be ready at any moment.

I waited to tell Katie we were going on vacation until the week before.  Katie is like a private detective and can sniff out any change in the “the force”.  She found the itinerary and crossed out the dates moving our vacation to March.  Unfortunately for her the tickets were already purchased.  She then tried to negotiate the days we would spend in Orlando and days at my parents place in Florida; everything is a negotiation for Katie.  She would make a great lawyer or interrogator.

We began packing the day before we left.  If we start packing too soon, it gives Katie too much opportunity to put more stuff in her bag.  Needless to say, about an hour before we were to leave for the airport we threw in the towel and decided to bring another bag because Katie was continuing her efforts to pack her whole bedroom into our bag.  Instead of fighting, we brought another bag.  She managed to fill every inch of that 3rd bag.

We arrived in Florida last Tuesday afternoon.  We got our hotel room upgraded to a 2 room suite and Katie had her personal space which is something she DESPERATELY needs.  After years of doing this, we have learned we have to allow her to have her space if we want her to cooperate with us to do any outings!

Wednesday morning started a little later than expected.  Katie was fine with us stopping at Walmart since Roy had forgotten to pack underwear.  We stopped at Walmart and bought a large pack of underwear and were on our way to Universal Studios.  Katie had been planning her wardrobe and her day at Universal from the moment she had accepted that she was going on the trip.  She is a HUGE Harry Potter fan.  She had on a Harry Potter skirt, a white blouse and a Griffindor headband; she was ready for her Butterbeer!  Needless to say, she loved every moment and wanted to spend the day in Hogwarts and Diagon Alley!

Katie with the Durmstrangs and Beauxbatons ~ a dream come true!

The next morning, we got up and out the door with no incidents or missing wardrobe pieces.  Katie was dressed in her new Belle dress and was ready to meet the princesses at Disney.  We knew this day would be harder because it was hotter and more humid and Magic Kingdom was likely to be more crowded than Universal.  We were not wrong.  No matter the season, Magic Kingdom is the big draw and everyone seemed to be there that day.  We managed to walk in the gate and Katie immediately got in line to take a photo with Snow White with no wait!  How perfect is that?  Win #1.

We made our way down Main Street and headed for the first air conditioned ride we could find – Pirates of the Caribbean!  We managed to make it around the park and hit several different rides without too long of a wait.  We did get the disability pass at Universal and Disney which is SO helpful.  It doesn’t reduce your wait time, but it allows you to sign in at a ride and then do whatever you want during the actual wait time.  You then come back to the ride and immediately get on.

Once we saw that everyone was lining up for the parade AND noticed some massive storm clouds moving in, we knew we had better get to the car.  We headed for the monorail and managed to miss a monsoon while riding in our comfortable cabin!  Win #2!  We headed over to Disney Hollywood Studios and checked out things there.  By then, Katie was starting to get irritable as were we.  It was HOT.  SO hot and incredibly humid.  We each got something cold to drink, adjusted our attitudes and got in line to meet Mickey and Minnie.  We ended our day at Epcot and headed back to our hotel.

Katie with Mickey

Katie with Minnie

The one thing we have learned is that while a vacation with Katie needs careful planning, it also needs flexibility and a willingness to know when enough is enough.  We don’t push anymore.  We don’t stop at every tourist trap, because it will turn into a nightmare.  If you take Katie into too many shops, she will want something from EVERY shop and have a meltdown because she cannot buy whatever she wants.  We remind ourselves that sometimes, less is more and that’s ok.

We headed down to my parents place in Southern Florida and began the relaxation part of our vacation.  Katie gets her own room and she immediately unloaded ALL of her electronics – a laptop, 2 DVD players (2 is better than 1), her Ipad, my Ipad, her phone, a surge protector and 2 extension cords.  She travels with all of this every time we go out of town.  I have learned to not fight it.  She also brings several of her stuffed animals.  I think it helps her feel more comfortable in her space; or she does it to annoy me.  I’m really not sure and have decided to leave well enough alone.  She spent most of her day locked in that room watching videos and making bracelets.  She isn’t bothering anyone!  She is on vacation.  While Roy and my idea of vacation is sitting poolside, shopping and eating out, Katie’s is staying in a quiet room with little light and being surrounded by all of her favorite things.  We don’t push her to do what she doesn’t want to do.  It’s her vacation, too after all.  

Just Dance

Katie has attended every school dance all the way back to middle school.  I remember dropping her off nervously at her first dance and going in to make sure she was safe and OK.  She was more than OK and ready for me to leave so she could get down with her bad self!

There is one thing about Katie that brings me the most joy – she doesn’t care one iota what others think about her!  Could you imagine going through life not giving a damn what others thought of you?  I certainly can’t.  When going out one of the first things I think is, “Who will I be seeing and what can I wear that will make me fit in.”  Katie doesn’t worry about any of this.  She chooses her dress for a dance based totally on what she wants to wear without a care for the latest trend or style.  Most of her choices are inspired by a movie or tv character.  In fact, most of her wardrobe choices are copy-cats of outfits she has seen in her favorite tv shows and movies!  She shops for most of her clothes online because she doesn’t have the patience to wander a mall and find pieces she wants (thank you Jeff Bezos for creating Amazon).

Her most recent dance was her high school Homecoming.  She chose to wear a black dress with a retro twist and added a red petticoat!  Could you imagine?  Also, she wore open toed black sling-backs.  She had me do her hair with lots of curls and then some gold make-up to match her ribbon she tied around her waist.  This outfit was inspired by the show Glee.

The most important thing about Katie’s dances is that she is allowed to be herself.  She chooses what she wears and who she goes with.  In earlier years, I over-planned these activities thinking I needed to.  Now I realize that she can go to a dance and enjoy herself on her terms.  When I pick her up at the end of a dance, she is always smiling and a little bit sweaty.  I know she has enjoyed every minute of the dance and that she will sleep well that night.

One thing I remember from the horrible days after Katie’s initial diagnosis in 2001 was ticking off the list in my head of all the things she would never do.  Attending a school dance was on that list.  I wish I could tell my 2001 self about all the amazing things she would do and that she would do them on her terms and in her own time-frame.

Bubbles and Baths

One of Katie’s favorite things is taking a bath.  She loves bubbles.  She loves Lavender.  She loves bath bombs.  And she uses a ridiculous amount of everything!  Our bathroom looks similar to an Ulta.  She keeps 4 different shampoos and conditioners in the shower, 2-3 different shower gels and of course, several bottles of bubbles.

I made a rule a while back saying she could only use 1/4 cup of bubble bath for each bath.  Katie still managed to go through a huge amount of bubble bath every week.  Unbeknownst to me, she was opening every bottle in our cupboard and pouring 1/4 of bubbles from each for each bath!  Can you imagine?  I had about 8 open 1/2 full bottles of bubbles under my sink!  I managed to combine a few and left one full bottle and hid the rest.  When she discovered this, she was not too pleased as you can imagine.  I am investigating making our own bubble bath.

Moving on, bath bombs are a racket!  Stores sell those darn things for $5.99 each!  I am paying a shit-ton for bubbles; I cannot possibly afford $5.99 a bath!  We decided to make our own and create a stockpile.  It took a while to find the perfect recipe, but we finally did!  We filled up a pretty glass jar with large bath bombs and the bathroom smelled like a lavender field.  I asked if we could possibly sell these, but NO!  She wants them all to herself!  Every other week, we drag out all our bath bomb supplies and mix up a batch of bath bombs!  It is very similar to her baking (only we can’t eat the leftovers) and she loves the end product!  If you want to give bath bombs a try, the ingredients and directions are as follows:

Katie mixing her ingredients for bath bombs!

Bath Bombs

Dry Ingredients
2 cups Baking Soda
1 cup Corn Starch (if you don’t want to use this, replace with sea salts)
2/3 cup Fine Sea Salts
*2/3 cup Sodium Laurel Sulfoacetate (SLSA)* OPTIONAL
Wet Ingredients 
5 tablespoons any oil (we prefer coconut oil and like to melt it down so it is a liquid rather than a solid)
4 teaspoons water
1 teaspoon Fragrance Oil (as you might have guesses, Katie refers lavender!)
Coloring
To add at end
1 cup Citric Acid (I think the higher amount of citric acid makes a harder bomb)

1. Add the oil and coloring into a small bowl and mix.  Add water and fragrance oil.  Of course the oil and water won’t actually mix together, but get it all in there.

2. In another bowl toss together all dry ingredients, except citric acid, being very careful with the SLSA since it is a superfine powder and will get up your nose and you will choke! You might want to wear a little mask or handkerchief.

3. Add the liquid to the dry mixture and stir.

4.  Mix well with hands, while doing this start adding the citric acid. (Katie usually wears gloves since the coloring will get all over your hands!)

5. It is ready to mold when it reaches pie crust consistency. Pile into mold cavity and push very hard down into molds.   We use round molds  and soap molds purchased at Hobby Lobby (you might want to lightly spray your molds with Pam to ease removal).  You can also use mini muffin tins!

We usually try to leave our bath bombs in molds overnight.  If using round molds, twist off one side and set into a muffin tin to keep upright.  This allows for faster drying but keeps your bomb from losing it’s shape.  If using a soap mold, you can leave in overnight or tap out immediately and let dry.

Some fun scents and colors we have tried:

• Lavender with purple coloring
• Almond Cookie with yellow coloring
• Rose with pink or red coloring

We have also split the batch in half and made 1/2 pink and 1/2 blue and then made the bombs “striped” and called them Unicorn Bombs.  (These are also fun to make in poop molds so you can call them Unicorn Poop Bombs!)