Monday, January 26, 2015

Andy has been happy

Andy's been in a great mood lately. He's been squealing and laughing a lot. He's doing much better at school now that he is only going for half days. He has also been far less constipated. I have been regularly giving him stool softener, and it is helping him a lot.

Andy is taking lots of steps around the house, while I hold his shoulders. I think it makes him happy to be upright, and doing things other kids do. He's overall pretty happy most of the time, which is a big change from two years ago.

Hopefully, two years ago was a crying jag that will not be seen again. It was years of frustration for both me and Andy, because neither of us understood each other. He was having major constipation issues, and feeling badly all the time. I was upset and in tears all the time, because I didn't know what to do for him to bring relief.

Andy showed me a little bit of love today by leaning in towards my head and kind of hugging me. Those moments never occurred years ago. Now I've gone from feeling so lost and afraid to feeling so lucky I have him.

Sunday, January 11, 2015

Kimba Ottobock Stroller Leckey model

I really regret getting the Ottobock stroller for my son. The main reason I dislike it so much, is because it is so heavy. The second reason is that it is always falling apart. Screws and other pieces are constantly falling out of it. You have to check it over and tighten everything by hand once a week basically to avoid losing pieces on the thing.

If you go several weeks without tightening screws and knobs, the stroller becomes very wobbly and starts falling apart. This is a four-thousand dollar piece of medical equipment. It's been a big headache if you ask me. Just wanted to put this out there, so that if you are thinking about getting one, maybe you'll think again.

Thursday, December 18, 2014

Tips for Planning a Disney World trip with Special Needs

Cinderella's Castle in Magic Kingdom
I've previously been to Disney World in Orlando, Florida and Disneyland in Tokyo, Japan before
having children, so I know the ropes a little bit when it comes to getting around Disney. I've also been once before with Andy when he was two years old, and we did not have a medical stroller or wheelchair for him yet. I would recommend talking with someone that has been to Disney World, as this can be extremely helpful before actually traveling there. Let them know what you'd like to accomplish.

On the plane, I was allowed to bring a diaper bag on for Andy. I put plenty of snacks inside, because one of Andy's main crying triggers is hunger.  Dried apricots and beef jerky sticks worked better than crackers which digest much faster. I also use them in between meals to keep Andy from crying at a restaurant when the food is taking a long time to come out. I was able to fit Andy on the changing table on the plane, but at times I also stood him up in bathroom stalls and did his diaper changes while standing.

I also bought noise-canceling headphones ahead of time, to use with an iPod shuffle on the plane and in the parks, to keep Andy calm. He loves listening to music, especially when it is through headphones. I also purchased a phone charging battery to keep in my purse for when my phone or the iPod battery got low. Andy's iPod shuffle actually never needed to be recharged during the day. I would charge it at night, and he would listen to it almost all day and night without needing a recharge. I clipped it right to the back of his shirt, so he wouldn't mess with it or the cords. The headphones helped him to remain calm on the plane, and on the busses. They helped him to not have to hear other crying children, which gets him upset. He did really well on the plane thanks to these headphones!

My main goal for the Disney part of this trip was to take the kids to eat inside Cinderella's Castle at Magic Kingdom, and at the "Be Our Guest" restaurant. "Cinderella's Royal Table" requires a 6 month scheduled ahead reservation. I had to call at 7:00am exactly 180 days ahead and still was only able to catch a 2:30 pm reservation and it was the last one! The character dinners and lunches are nice because it allows your kids to meet and have photo opportunities with several characters without having to stand in line. After we ordered our food, five Disney princesses came into the room and started going from table to table. (Sleeping Beauty, Jasmine, Snow White, Ariel and Cinderella) They would stop by to say hello, sign the kids autograph books, then stand with them for pictures. We also got a nice 8x10 and four 4x6 photos to take home. I also made other reservations at non-character restaurants to guarantee we'd have somewhere to eat.

Cinderella's Royal Table Restaurant
I searched the internet for blogs about cognitive disabilities at Disney, because the actual Disney World sites don't give you a whole lot of details on what to do or expect. If you are driving to Disney, you won't have to worry about how your wheelchair will be handled by an airline, or riding on a bus from the airport to the hotel.

If you are flying, you will have to tell the staff at the gate that you need to use the wheelchair right down to the plane opening. They can then use an aisle chair if you cannot transfer your child to get to their seat. Andy is still light enough that I can carry him to his seat. Once I had Andy wheeled down to the plane opening, I had to have a family member hold Andy while I folded up his wheelchair. He has the Kimba Ottobock chair and it is quite heavy. The airline staff must have thrown the chair in the cargo hold, because they returned it to me in Orlando with a busted armrest. The armrest was completely severed from the chair.

I was lucky that they handed me the broken piece, because it was needed to put the tray on to his chair. We asked the front desk for some duct tape at the resort, and thankfully , they had some. I was able to duct tape the armrest back on for the four days we were there. It was helpful to have his tray on because it helps keep him secure in his seat, and also allows me to feed him better.

Once I found that the airline had damaged Andy's chair, I was supposed to report it right then at Baggage services, but I did not know what to do at the time. I later waited in a long line at the Detroit airport Baggage services office to make a claim about the damage. The airline is now following up with me about reimbursing us for the costs of repairing the chair. They are getting in touch with a medical equipment company to come assess the chair at our house.  When getting back on the plane I begged the guy that would be putting the chair in the cargo hold to please be careful with it, because it had already been broken on the flight down.

Andy on the Magical Express bus 
Once we got to the airport, we headed to the Disney Magical Express line. I was told to request a special services bus for my son's chair. My son's medical stroller has bus tie downs on it, so that it can be strapped down in a bus, and he can ride in the chair safely. This has to be done ahead of time, and you will have to get these tie down parts from your medical equipment company.

Wheelchairs are always loaded first, before the rest of the general public. This way they can load multiple chairs if needed by folding up passenger seats to reveal more tie down spots. Sometimes, the bus drivers were loading up my son's wheelchair, plus another guest in an electric scooter or push wheelchair. After they are secure, and the rest of our party was on the bus, the rest of the line was allowed to board the bus. The monorail was also wheelchair accessible.

When getting to the parks, the first thing I had to do was go to guest services and request a "Cognitive Disabilities" Card. They will take a picture of your child and ask what concerns you have with your child waiting in line. I told them of Andy's autism diagnosis and brain disorder, also that he cannot walk or talk or understand a whole lot.

Several of the rides were wheelchair accessible, such as "It's a Small World ride" at Magic Kingdom and "Finding Nemo ride" at Epcot. The staff would ask me if I'd like the wheelchair loaded on the ride, or if I wanted to transfer Andy onto the ride.

I would go to a ride and hand the card to the staff member. They would then right down the return time and we could come back at that time to go into the fast pass line. We would still have to wait 10-15 minutes from that point, because there were other fast pass people in line too. Some of the staff members let us board the ride after waiting a few minutes on the side if the line wasn't long. We also had other scheduled fast passes that we used for pre-planned rides. Our whole party of 9 people was allowed to board the rides with Andy. We could also get times for character greetings, and get into the handicapped seating area for outdoor shows if we arrived 30 minutes early for the show.

Be Our Guest Restaurant

Andy had such a great time. He was happy to be always on the go. He loved all the bus rides, and being pushed all around the parks. He really loved seeing all the lights at night. He would just stare at everything and clap his hands. I am really glad that we got to experience seeing Disney at Christmas time this time, because they really decorate and light everything up.

We stumbled upon a dance party at Magic Kingdom and Andy loved it. He loved the music and watching the characters there. We had a great time dancing around. 

We kept a very busy schedule, and were always heading towards the next thing. I planned a whole itinerary weeks before the trip. It was important for me to have the kids see some of the characters they didn't get to see last time. I scheduled fast passes for some characters, and others we used Andy's disability card. It was important to know ahead of time which characters were at which parks, and the time frames that they would be there. That way we could be sure to catch them during our visit. For example, Pocahontas is only at Animal Kingdom, and only during limited times. Also, I wanted to find Merida and Rapunzel this time, both are at Magic Kingdom. We also missed Tinkerbell last time, because she is hidden inside the Town Square Theater in Magic Kingdom.  I used the Disney Experience app to keep track of where to head next.

I would highly suggest having some type of plan for what you want to do when you are there. Fast passes are scheduled on line 60 days before you arrive. It is better to do this, than to just show up there with nothing planned. Restaurant reservations can be held with a credit card. I was able to add two people to my Cinderella's royal table reservation at the park, but they wouldn't do this over the phone. It was better to explain in person that we needed to add two on, although I heard they really won't add more than two people.

Luckily, Andy fell asleep just as we were getting off the plane and continued to sleep in his chair for an hour while I was speaking to Luggage services. He was very warn out after several days with no naps. We still had an hour-long car ride home from the airport, and he never cried once on the whole trip. There were no melt downs, or bad behavior at all! We were very lucky!

Saturday, December 6, 2014

Bonding more with Andy

Andy let me cuddle with him yesterday. Normally, if anyone tries to pull Andy close to themselves, he pushes them away. He doesn't enjoy hugs, and he lets you know that he doesn't want to be hugged or held by pushing with his arms. I was sitting by the Christmas tree yesterday, and Andy laid his head on my shoulder while cooing. He stayed there, so I started to hug him. I laid back with him as there was a pillow behind us. He stayed in my arms, and I pulled a blanket over us. He let me cuddle with him for about 20 minutes! It was so nice, and I soaked in every minute.

I continue to hold him under his arms as he takes steps around the house. He is a long ways from walking, but I think the stepping is doing his brain good. He seems to be making minor improvements in his brain, by taking about 200 steps a day. He steps with assistance from his bed to the living room, and to and from the kitchen table. We carry him as little as possible now, and demand that he steps more often.

Andy enjoys being upright. He lets us know when he is ready to sit and play with toys by attempting to sit down after taking his steps. If he wants to stand a little longer, he will keep his legs locked and sometimes clap his hands. Andy plays a lot on his belly as well. He does not ever get into a crawling position. If we try to put him on all fours he protests and straightens out to get back down. It is hard to keep him on hands and knees because it takes too much strength. I do not feel he will ever crawl.  I don't feel his brain understands it. It is much easier for him to take steps, than to coordinate four limbs moving in perfect synchronicity to move forward.

I am continuing to see very small changes in him, which I think is due to his brain slowly developing. I feel that the steps he takes each day is helping this along.

Friday, November 21, 2014

Headphones with music help Andy to calm down

I purchased some noise-canceling headphones for kids on I was looking for something to go completely over Andy's ear, and that he couldn't easily knock off of his head.

We hook the headphones up to an iPod. Andy loves listening to the Black-eyed Peas. We play the entire "The End" cd for him, and he loves it. He will listen to the songs over and over.

If Andy gets cranky, or becomes inconsolable, putting the headphones on him calms him down. It seems to distract him, and gets him to just focus on the music. He quiets down almost instantly.

I mainly bought these for an upcoming trip we are going to take to Florida on a plane. However, we've been using them several times a week to calm Andy down. One time he was trying to eat dinner and started crying. I put the headphones on him to get him to finish the meal.

Another time, we had some smaller kids over and the little one was crying. It was upsetting him, and he started to cry.  So I put the headphones on him, and he cheered right up. He started laughing and enjoying the music.

We do have to try and keep Andy from messing with the volume controls. We set it so he can't make it too loud, but he will start crying if he turns the volume all the way down. Then when I look to see what's wrong, I find that he can't hear it. My husband clipped the iPod to the back of his pants, and this kept him from being able to reach the volume controls.

These headphones have been great, and I hope they help on our trip to Florida. I also got a battery pack to charge my phone and the iPod if we are on a plane or in a restaurant, and the battery should go dead. I will also be bringing Andy's inflatable bed to sleep in at the hotel. We got it from Walmart. I use it, so I don't have to worry about him falling out of bed.

We will be visiting a water park soon too, so I will be bringing the bed and headphones. I am hoping Andy will enjoy the trip. He likes playing in water, so I thought he might like it.

Friday, November 14, 2014

Andy's practicing stair climbing

Andy doesn't have any balance and cannot stand on his own. However, when I hold him at the waist, he will take up to 25 steps at a time. He seems to be getting faster at it too. I've tried to have him go up steps several times, and he just wasn't ready for it.

I've been leading Andy towards the stairs again, to see what he'll do. He will lift his leg up to attempt to put it on the first stair. He doesn't usually lift it high enough, but I grab under his knee and place it on the stair. I then lift him at the waist, while he stands on the stair with one leg, then he brings the other leg down.

I am hoping that we can avoid having to buy a chairlift/ stairlift for Andy when he is too heavy to carry, if we are not back into a ranch (one-level) home by then. The bathtubs are all upstairs right now, so Andy has to be carried upstairs several times a week. He helped walk up the stairs the other day.

Andy does not crawl. I've tried to put him through the motions of crawling up the stairs, but it is frustrating for both of us. Also, it is so strenuous and straining on me to have him fight me the whole way up the stairs as I try to bend his legs to make him crawl that I don't do it. I can carry him on my hip right now up the stairs at five years old. Seven, eight or nine years old, this might not be possible.

For now, I am trying a little here and there to get him familiar with the motions of stair climbing.  Going down the stairs is a whole different story. It is very scary for him to be unfamiliar with how to step down, and he gets frightened and puts his arms over his face. It is much more easy to carry him down the stairs though, so I will be happy if he can help me with climbing up. He claps when we get to the top, so I think he knows we are happy he did it too.

Monday, November 10, 2014

Happy Day for Andy

Andy was so happy and cheerful today! I wish I knew what was putting him in such a good mood. He was laughing and smiling so much, it was so nice to see. He had a great day at school, and didn't cry at all at home. He was cracking up laughing a few times. I've never seen him smile so much at us.

This was a great day, and I am grateful for it. I am happy that we all got to have some good bonding time with him today. I think he felt a lot of love today, and it seemed he was really enjoying life. He also continues to take several steps around the house, while I hold him under his armpits. It seems to be good for his brain.

Thursday, October 30, 2014

Feeling triumphant again

I was talking with a psychologist the other day, and she asked me, "Doesn't it seem like there are
more special needs children, now, than ever before"? It is probably true. I am so amazed at how many families, just in my neighborhood, have children with special needs.

It does bring about a sense that we aren't so extremely different from everyone else. Other families right in our same neighborhood are dealing with the same issues that we are. It helps me feel that I have someone real I can talk to, or share an "I've been through that" moment with someone on the walk to my kids' school.

I feel so lucky to be able to go online and find quick answers to burning questions about my son, or other problems that come up with him. And isn't it great that we have blogs, and internet boards that we can help each other on? We would all be so isolated without the internet, and left to feel so terribly alone. I am grateful we have more resources today than ever before.

My self-help program is going well. I've been seeing a counselor, and have picked up great tips from other support groups that I go to. One of them is setting small goals for myself.

I used to end each day feeling so defeated, because I had an overwhelming list of things that I wanted to get done, and could never get through in one single day. There was just too much that I wanted to accomplish, and things weren't prioritized correctly.

Now, I've taken a step back, and I only give myself small daily goals. When I accomplish these goals, I end up feeling triumphant. It is such a better feeling, rather than feeling I have failed. Feeling that I got done everything that I wanted to get done is so satisfying.

I like setting small goals and achieving them, because it helps me get through the tough and challenging times. When my mind is set on painting a room in my house, or organizing clutter, I am not spending endless amounts of time worrying about Andy.  Changing the way you see things can really have a positive effect on your mood. It has really been helping me, and it helps the way I parent my kids.

Wednesday, October 22, 2014

Andy still has inconsolable crying episodes

Just an update on Andy's crying episodes. He still has them. I just don't write about them that often. We just took him up north on a camping weekend, two and a half hours from our house. When it came time for him to go to bed, he flipped out and cried for three hours straight.

I didn't know what was bothering him. He was crying in such a frenzy, that his pajamas became way too warm. He was covered in sweat. So, I changed him into cooler pajamas. Then I gave him some medicine, thinking he must have a headache, after screaming for over an hour. I tried holding him, then my husband laid in bed with him.

He was like a newborn infant crying out of control, and any little noise that happened would get him crying again. It was horrible, and we were too far away from home to drive back. Once he fell asleep, he stayed out for the night, which was great.

We went camping to see the fall colors, which are much more brilliant and vibrant farther north from us. The land belongs to my husband's parents/my in-law parents, and it was so beautiful! This time of year is so great for pictures. I stood in the woods for a while just watching all the leaves falling from the trees like it was snowing. It was so peaceful, and was a nice calm relaxing moment. I took a little video of it too, but it's hard to see the leaves falling.

I wasn't able to get many pictures of Andy, because he was crying soon after he was outside for a while. The weather was cold, but he was bundled up. He just didn't want to be outside, but I got a few at least.

Sunday, October 12, 2014

Andy keeps getting sick

Andy is constantly putting his fingers in his mouth. Everything goes to his lips, because he comforts himself by touching his mouth. So, this is causing Andy to take in all kinds of germs. He has only been in Kindergarten for five weeks and he has missed 5-6 days of school.

It saddens me a little bit to know that during the eight weeks he was at the Autism Center he NEVER got sick once. He never missed a single day. They kept him with one person all day, and maybe they were good about wiping his hands down. Childrens' immune systems supposedly get better over time with being exposed to lots of children, but Andy's isn't up to speed yet.

We are looking into getting a new insurance policy for just Andy that has an Autism benefit on it. We cannot sign up until mid-November, because this is when open enrollment is. Once he gets on the new insurance, we will have to have Blue Cross pre-authorize his therapy at the Autism center. After that happens, we will have to hope they can make a spot for him.

I think it will greatly benefit Andy to be back at the Autism center, and I am not sure how much school he will be able to still attend. I hope all these experiences will amount to something good for him in the end. It is so hard to know what is the best thing for him, and making the decisions is stressful.