Playing Ice Hockey

Yesterday was such a fun night for our family! I signed Hailey up to participate in a ice hockey activity with the Paralympic organization! Her adaptive PE teacher invited us to attend knowing Hailey would enjoy it. She had SO much fun and even made a goal! It was great to see her be able to “ice skate” and be with other children of different abilities. I (mom) have never been in ice skates before had to learn pretty quick so I could take her on a few laps around the rink. Hailey was hesitant at first but when she saw other kids out there and waving and smiling she wanted to give it a try. We spent about an hour and a half on the ice with smiles the whole time. What a great organization!

My opinion on a new Theme Park we tried out

This weekend was the first time we had thought about taking Hailey to Knott's Berry Farm. I've only had one experience with KBF and it was an email communication asking if anyone could answer some questions I had before we spent the time and money going. It was a very short conversation as they didn't really answer any of my questions without suggesting that they couldn't / wouldn't be able to tell me yes or no. Everything was "Up to me" to figure out.

Knott's Berry Farm was never on our radar. When Hailey had her Make a Wish to Disneyworld, we also got tickets to Universal Studios and Sea World. I personally am NOT a fan of Sea World or any theme park that is zoo like. I understand learning from animals and healing and rehabilitation of animals but I watched too many documentaries and it's just not my thing. We went the one time and it was perfectly fine, but we never felt like we have wanted to go back. Disneyworld was awesome and we frequent Disneyland about every 3 months. That place makes Hailey so happy! Universal Studios is AMAZING with kids who have special needs. Hailey could not ride one single ride at Universal but the character experience is what she enjoys.

I had wondered why we never hear anything about Knott's Berry Farm and Make a Wish. I may be completely wrong (This is my opinion after all) but I don't think Knott's has a relationship with Make a Wish to give complimentary tickets out. Them not having a relationship with Make a Wish could make it so that I wouldn't want to go there ever again.

We decided to take a chance with Knott's Berry Farm. All I have known was that they have Camp Snoopy and that should be kid friendly right?? Well...Not exactly.

As you probably know Hailey has a g-tube and she has a pacemaker. She wears AFOs on both legs, she wears glasses, she's developmentally delayed and she's 10. So she loves the little kid rides but she's TOO tall to be able to ride them. Physically Hailey is a taller then average 10 year old but mentally she is about 5 or 6 years old. So while Camp Snoopy did have rides she would love to go on she wasn't able to because she's too tall. The rides she was tall enough to go on were to intense for her and in the end there were not very many rides in the Camp Snoopy area. We tried to see every single show and we rode 2 train rides.

The price point for Knott's Berry Farm would be amazing for an average "typical" child but we just couldn't do much. We are at the point where we can make anything work so that's what we did. We took our time, we walked around, we saw the shows, we talked to the employees, and saw characters.

The one thing that was great at Knott's was you don't have to fight for a disability pass.  It's pretty much a no questions asked type of thing. Well, at least for us. The employee did see Hailey was in a wheelchair. At Disneyland they will try every which way to deny you a disability pass. You really have to argue your way through the conversation to help them understand why your are "worthy" of obtaining one. In my opinion that's Disneyland's one downfall.

In the end if I could decided to go again after what I now know I probably wouldn't spend the money. If I could suggest things to Knott's Berry Farm it would be the following:

*expand Camp Snoopy to include more for kids of different abilities.
*all the rides are outside and they should have at least a couple to get out of the sun
*I didn't enjoy how many times LUCY called Snoopy "Stupid" or a "Stupid Dog" I tell Hailey not to call people stupid.
*They need more companion bathrooms or family bathrooms and they need to inform their employees what those are and where they are located.
*The bathrooms were not constantly being cleaned like they are at Disneyland. I've never been in a dirty bathroom at Disneyland.
*there didn't seem to be a lot of places to cool off. Universal Studios has misting machines with fans going every few feet, which helps a lot!

So that's about it. It's just my experience and my opinion. I thought it might help anyone that's in our situation on similar to know these things or at least have an idea about them. I feel like we went in completely blind and I couldn't find anyone to help me out. Hopefully this gives someone a bit of insight to ask more questions before they pick a theme park for their family.

Day 2 at Disneyland 2014 - Autographs Galore!!

Princess Hailey was ready for day 2 at the Parks. Today will be mostly about meeting characters and obtaining autographs. This will be the highlight for Hailey. Since we aren't having the greatest luck with the new Guest Assistance Pass and there are only about 5 rides total Hailey could go on, this is our mission for today. 

One place you are sure to find Mickey is in ToonTown, at his house. This day Fantasia Mickey was there. We've never seen him before, we've seen regular Mickey. Again Hailey was determined to stand on her own and I was in the background holding my breath ready for a quick catch if necessary.

 Mary Poppins and Bert were going for a stroll through the park. I don't know if this is a new thing or just something I have never seen before. You can walk with them and they will sign your autograph books. It's a little harder to do in a wheelchair. I was afraid I'd run over someones foot...

 Hailey's ABSOLUTE  favorite princess is Merida from Brave. Last year Hailey was NOT able to bare weight on her legs or get out of her wheelchair. Lucky us this was the same Merida as last year and she REMEMBERED Hailey!! That meant SO much to us! She told Hailey that Hailey was a Brave girl and that she was so happy that Hailey came to see her and that Hailey was standing on her own!

Merida made Hailey pinky promise that Hailey would keep being Brave and would come back to see her again next year and every year after that. 

 Again I teared up. Hailey listened so intently to the words Merida was telling her. Merida might never know how much that meant to me and how I know that Hailey will remember this moment, but I wish she did.

 Hailey was the last child before Merida "had to go feed Angus her horse." Merida asked if Hailey could go for a stroll and I could only nod my head because if I spoke I'd cry. Hailey got to walk with her favorite princess! Last year at the hospital before we went to Disneyland and Hailey was wheelchair bound we were told she'd most likely never walk again. Her disease was progressing too fast. One year of not being able to walk and tons of physical therapy and leg braces and determination and our little girl is taking steps at Disneyland with a princess.  

 Merida had so much patience as she walked with Hailey and I knew that this would be once of the best experiences for Hailey to have. We took a video as well and posted it on our Facebook page. 

 One last very long hug. Hailey did not want to let go. This was the most amazing moment of our trip. I think of all the issues we had during our trip and when I see this photo or see the video I forget all about that and think back to this moment when my daughter was elated with happiness!! Thank you Merida! 

 Another character we had found while on a stroll was Alice. Hailey hasn't seen Alice in Wonderland but that didn't matter. Alice was so nice and held hands with Hailey and signed her book for her. Alice had to hurry, because she was chasing a white rabbit who was late for a very important date. That was her story and she was sticking to it. I loved how Hailey said she wanted to go look for the rabbit too...

 Hailey knew right away who the next charter we found was. From her chair she pointed and yelled, "HOOK!!" She talked about her friends Katie and Bry who love pirates and made sure I let them know we found Hook! This was the first time ever seeing Hook for any of us. 

 We now know that we can NOT go to Disneyland without an autograph book. When that book isn't being signed Hailey is flipping through the pages over and over. She LOVES it! 

 With Pixie Hollow kinda being tucked away the lines aren't too terrible and Wheelchairs ARE allowed. Last year we saw Periwinkle and Vidia, today we found Tinkerbell. We've never met her before either. What a day of firsts!! 

We had found Mickey and now we were on the look out for Minnie. Hailey could have just spent all day in Minnie's house in ToonTown. Everything was her size and she was having a ball looking at every single detail. 

 Hailey loves Minnie's autograph by the way! 

 The only place you can catch 5 princesses in one place and guarantee you get time and an autograph is over at Ariel's Grotto for a Character Dining experience. I made reservations to have lunch with the princesses and Hailey was beyond excited for this. If you remember last year this did NOT work out very well. This year and this experience was awesome! 

 Hailey again looking at the autographs. 

With the issues we had about not being able to take wheelchairs through character lines I talked with Josh about doing this lunch. Yes it's expensive and No Hailey doesn't eat any of the food, and they don't give tube fed children a discount, me paying $100+ is almost worth not fighting the lines.  

 Phineas, Ferb, and the Campfire Girls! 

 These guys were dancing in the street so I stood by while Hailey joined the party. 

Before our day had even started I had remembered that I forgot sunscreen. I had to stop at the gift shop to spend a small fortune on some Coppertone. While there Hailey spotted a little boy wearing a Make a Wish t-shirt and she said to him, "I HAVE that shirt too!!!" There was a family that was there on their Make a Wish trip and we told them that they are going to have SO much fun and that it was Hailey's 1 year anniversary. This family was staying at the same hotel as us and we were happy to wish them the best day ever! Little did I know I'd run into this family again. You would think that Disneyland is SO big you'd have a hard time seeing the same people twice, but it was meant to be. While in line for the Disney Jr. Live show (which we've seen 3+ times) we ran into the same family again! I started talking with the little boys grandmother, Missy, and we just instantly clicked. We got on the topics of g-tubes somehow and as soon as I mention "tubie" Hailey wants to show off her new belly pad she had on. Missy hadn't heard of tubie/belly pads so I told her that I have extras and since we are in the same hotel I will send one over to her. She can sew, and it wouldn't be hard for her to make her own. Her grandson, Bubba who is battling Neuroblastoma for the 3rd time, has trouble with granulation tissue and I told her Hailey had the same issues. I didn't know about these pads until my friend Mary sent Hailey some and they have been the best thing ever. 

 The next day when we left the park early I got a message from Missy saying that she and Bubba loved the belly pads and she was going to go home and get started on making them herself. She had needed some syringes and I had extra so we met up at he hotel and sat down to talk. It felt as if I was talking to a friend I've had for years. We are staying connected on Facebook and I am so happy we met! Hailey right away wanted to share the Mickey lollipops she got and she even let Bubba pick the red one! That's true friendship!

I didn't used to be able to just start talking to people I didn't know. I was so shy growing up. If it wasn't for Hailey and our situation I don't think I would be able to just start talking to people. When I learn something I want to share it. I know there are other people like me who are doing this whole parenting medically fragile or a child with special needs for the first time, and don't know what to do sometimes. The things that people have shared with me I'm very grateful for and I feel good passing along the information. We are all in this together.

Day 3 is just around the corner and maybe 3 days at the park is a day too much. We'll be sleeping in tomorrow and taking our time. Stay tuned to find out how we spent our day!

Guest Access Pass or Disability Accommodation Pass for Disneyland 2014

This is a very hard post to write. I've had many bullet points listed that I want to address. I don't want to completely harp on Disneyland and how this new accommodation pass just plain doesn't work with out offering a solution to the problem. I know that it is not my job to offer suggestions on better ideas, but if this is a problem that affects my child I feel I at least should put what I think out there. 

You can get the new GAC or Guest Assistance Card at Main Street or guest relations at either of the parks. It doesn't take much to explain our issues. My child is sitting in a wheelchair. Not a rented wheelchair, a super heavy duty wheelchair customized to her specifications. It's not fun to travel with this monstrous wheelchair but it's a part of her so it goes where we go. Even when we travel 4,000 miles across the country it comes with us.

The other side of why we need accommodations are things about Hailey that you may not be able to see. She's tube fed and if it's hot outside we'd go back to the hotel to do her feeds that take an hour or more. She takes medications throughout the day. Even though she's not bashful about showing everyone her "tubie" I'd rather go to the first aid station to administer her medications via G-tube and not have to do it while standing in line with people all around who might feel uncomfortable with me doing this. Hailey wears diapers and there are only a handful of companion restrooms that I could use to do a diaper change. The bathrooms aren't accommodating for a 5 year old 57 pound child that is diapered. The diaper "area" is more fitting for a child up to about 2 years of age. Because of this issue, I can't change her on my own. Josh will hold the pull down flat table while I do the changing. I know Hailey exceeds the weight limit on those things so I try to find the bathrooms that have the tables build of concrete that she barely fits in but is more sturdy. I still need Josh to lift Hailey out of the wheelchair and up on to the table.  I know there is one of these restrooms near Autotopia and one in Toon Town. Hailey gets overstimulated very easily and doesn't make staying in a line very easy.  

I wanted them to explain to me how this new GAC works. Hailey gets her picture taken and they ask you how long your stay will be. They make a card with the picture and her name on it and how many people are in our party. It's similar to a folded card with blank lines on the inside. In each park there are 4 kiosks. You tell the Cast Member which ride you would like to go on. They look up the wait time subtract 10 minutes and write down a time for you to return to that ride. Example: Luigi's Flying Tires has a 40 minute wait and it's 1:00pm. They will fill out that you need to go back to the ride at or after 1:30pm. You need to wait until that time to go to the ride where the other cast member will cross off the time let you on the ride and you will then need to go back to any of the kiosks and pick your next ride. You can not have multiple times written on your card. You have to do this for every ride you go on. If your child is like mine and can only do a handful of rides you are stuck going back and repeating this experience for the same ride many times over.

You can not use this card to meet the characters and I was also told in lines such as the one to meet the newest princesses from Frozen, wheelchairs are NOT allowed in the line. The cast members told me I must have someone (either me or Josh) wait in the line even if the wait time is 120 minutes or longer. There are a couple reasons this doesn't work for us. 1) How are wheelchairs not allowed in the  lines? 2) If I need to change Hailey's diaper and I need Josh and we have to walk over to Tomorrowland or Toon Town from Fantasyland we'd either loose our place in line or irritate the other people waiting while we get out of line and come back 1/2 hour to 45 minutes later. Same goes for medications. 2) What if we run into a tube feeding time? I'm not going to bring our whole set up for her feeds to the park and hook her up for all to see and have her be stared at. Meeting these characters is a really special thing for Hailey to do and I don't want to take that away from her because she's in a wheelchair and can't stand in line. There are multiple Mickey's, Goofy's, and Donald's. Why aren't there multiple princesses like these ones that are so sot after? There is a way to cut down on that horrendous line! How hard is it to add more Princesses???!!!

I understand that people without disabilities where abusing the system. I don't think that CHILDREN with real disabilities should be punished for this. This new system has a lot of BUGS that need to be worked out and I know that they are brainstorming on new ways to use this GAC card. The way it is set up now is an even EASIER way for those awful people to cheat the system. You hear people with the new GAC cards say, "Screw going to the kiosk, write your own time in." You have a big group of people who get multiple GAC's and they all get different times for different rides and they all take turns getting later times. 

While getting a time to be able for Hailey to go on the Storybook ride I go up to the cast member at the kiosk and ask for a time. He said that the wait for that ride is only 1/2 hour that I should ask for a time for Splash Mountain or Star Tours that have wait times of over an hour. I tell him I'm not here to ride the rides for me, I'm here for my daughter and she wants the storybook ride. I think he thought I wasn't taken advantage of the pass. Another issue we had was at the kiosk when a cast member gave us a time for a ride and wrote the time in blue ink. When we go and redeem the time we are scolded because times are only written in BLACK ink and any other ink it's considered fraudulent and that time gets voided and you must get another time. That was NOT our fault! The Disneyland EMPLOYEE did it. When I went back to have a word with that cast member she was gone. I did find her the next day and tell her the grief and annoyance her mistake caused us and I also told guest services how appalled I was that I was accused of writing in my own time. To make up for THEIR mistake they gave me a pass that let us go on any ride we wanted with NO wait. 

Like I said before in my first post about going to Disneyland, there are only a handful of rides Hailey is able to go on and that she likes. Maybe Disneyland can take this into consideration and have kids with certain disabilities pick 5 or 10 favorite rides and have us have passes that we don't have to wait for 1/2 hour to 45 minutes in-between to go on. Hailey would be perfectly happy going on the Little Mermaid ride 10 times instead of the 3 times we were able to because of the wait times in-between going to the kiosks. If they did this in conjunction with the GAC pass that might be an idea!

I know that the American Disabilites Act doesn't allow for any kind of proof of disability so if you say you have a disability they take your word for it.

One more thing that we experienced was when we went to see the Aladdin Musical. Strollers are NOT allowed. Wheelchairs are. A lady had her child sleeping in his stroller and she wanted to take the stroller into the show. The cast member told her strollers aren't allowed. The woman said that she could not carry her child into the show and she wanted him to remain asleep so she asked again to take the stroller into the show. Again she was told strollers aren't allowed and the women said that if wheelchairs are allowed strollers should be as well. The cast member asked if the stroller is a wheelchair? If it is that is fine but you need to get a special tag from guest services." The women said no, that the child is asleep and she can not carry him as he is too heavy for her to lift. I could not help myself from saying that, "sleeping is not a disability." This woman started FUMING! She asked for the cast members name and said that she wants to speak to a manager. The cast member told her name and even how to spell it. I mean, you don't even have to be a parent of a child with a physical disability to know that conversation should not have even taken place.

With this new system in place a person in a wheelchair can NOT enter through the wheelchair entrance without first getting a return time. Isn't the purpose of the wheelchair entrance is so a person in a wheelchair may enter through there? That is how it was previously and it seemed to have worked pretty well. Now, not at ALL!? It's very frustrating. 

There were the cast members that went above and beyond to make sure that we at least felt like we were being heard with our questions and concerns. We saved up ALL year long to be able to take Hailey on a short vacation to celebrate such a special occasion to us as her Make a Wish Anniversary, to be able to continue to create these precious memories with our terminally ill daughter. Some of the memories I have from this trip I don't want. We did our best to make the most out of this trip with our daughter. At the end of the trip we simply ended up leaving early and spending time talking with other families and taking Hailey to watch movies in the concierge area. I don't think I could pay Josh to do this all over again. 

The people at Disney just need to put their heads together and get this taken care of immediately. If they need help from the people that this effects then ASK FOR INPUT. I'm more then happy to help lend my insight and opinion on these matters. 

I imagine all the hoops I have to jump through to prove Hailey has a disability even though it's completely obvious when I apply for different services. I have to supply doctors reports, proof of prescriptions, I argue with insurance companies. I wouldn't claim my daughter was disabled if she was NOT. I have to live this nightmare fighting for my daughter EVERYDAY. I shouldn't have to fight for her to go on a couple of rides at the "Happiest Place on Earth..."

A special gift.

Last year was quite the year for new accomplishments for Hailey. Being in an almost vegetative state, then sitting up on her own, to barring weight on her legs, to taking steps, to actually walking with assistance. 

We purchased a more suitable wheelchair 

and then a few months down the road we got Hailey her gait trainer (giant walker) 

Our limit through our insurance was reached and Hailey needed a walker. We had a walker from a previous episode of Hailey's where she needed help to walk. She didn't use it long, but I didn't get rid of it. 

Hailey quickly grew out of that walker and needed a new one. Thankfully a little girl who attends the same Therapy center as Hailey does, was getting a new one and no longer needed her current one. She graciously let Hailey use her reverse walker. 

Hailey quickly reached the limit on the height for this reverse walker and now we were looking for a new one. One that would grow with Hailey. Insurance was a no go. Being the beginning of the year we have to reach our deductible for the insurance to pay for it, or we buy it ourselves. Even buying it through a company referred by the therapy center, this walker would cost  a LOT of money! 

I did some research seeing if it would be more cost efficient to purchase this walker directly from the manufacture. I checked all the different "adaptive" websites that sold these walkers and the best deal was eventually found!! 

In December, Josh was at work and received a gift with Hailey's name on it. This gift was given to us right at the most perfect time! 

Hailey NOW has a new walker that will grow with her for at least another 2 feet!!! The only downside according to Hailey, "It's NOT pink!!"

On behalf of Hailey, Josh, and myself, we like to thank the following people: Brenda, Casey, Peyton, Mark, Donnell, Marilyn, Mark and Lisa!!

You have given us an incredible gift and to say thank you would not be enough! Hugs to you all!!!