Time for honesty right up front here, this aspect is one of the most frustrating things for us right now. We have done and tried so many things, and still haven’t found the right solution for us. This doesn’t mean we are giving up though.
From the beginning, we tried hard to get Carter to go to school for one main reason, we wanted him to socialize and have friends. Carter is already a smart kid, and we knew he was an easy learner from the beginning. The kid taught himself Spanish and French, and watches all of his shows and movies in different languages. However, when he was forced to work in a group setting, he began to get impatient and frustrated. That’s when the nightmares began.
When Carter was younger, school was easier. As he got older, more issues began in the school setting. He even escaped from school in North Carolina by running through a door and dashing through the parking lot. The school wouldn’t even get a lock for the door, and we had to buy one ourselves to give to them. The door was in the special education classroom, which makes no sense as it is to have one of the only doors there.
When we received orders to Virginia, it got even worse. Carter was being placed into confinement rooms, and even had teachers writing the answers on his quizzes for him. Carter may need help, but we feel as though he shouldn’t have others do everything for him. Once dad deployed to Africa last October, Carter hit an all new low and lost all interest in school, and they didn’t help out in the overall issue at all. Instead of trying to find new ways to create inspiration and joy, he got locked in a room away from the others.
So at this point, for a second time, we are now homeschooling. However, not all bells and whistles coming from this house. Homeschooling for us is extremely difficult, and we have the hardest time trying to find the right curriculum that would give Carter the best learning experience. Whether its video learning, workbooks, or online schooling, we have yet to find the right way to school at home. We are now in the process of looking into private schools for autism, and even have a vision of opening our own school for kids with autism in the future. School is so important but also so hard when there are obstacles that cannot be overcome.
Good luck with your schooling adventures, and don’t hesitate in making a choice, you know what is best.
What an emotional roller coaster for us during this time in our life. In a later post we will go into more detail about Carter’s brain tumor, but we feel as though it is important to discuss our experience with the Ronald McDonald House while Carter stayed in the hospital for more than a month. Hopefully, this will allow another family who does not know about this wonderful charity to be able to spend more time closer to their child than on the road traveling.
Your life gets turned upside down, and you have no idea what is actually happening at any moment. There are doctors everywhere, decisions to be made without time for consideration, and one of your precious child’s life on the line. There is no way for anyone to be prepared for such a task, yet you are forced to be in this position. It’s up to you, and every decision has a consequence. I am not trying to create this dark atmosphere of anxiety or emotional catastrophe, but to ensure understanding of the difficulties involved.
Now take all of that, and be forced to drive back and forth hours away because the entire family cannot stay in the hospital room, or a parent has to go back to work. For us, we were fortunate to have Kelli as a stay at home mother, and dad being an active duty Marine. This gave flexibility within the command, and allowed both parents to stay at the hospital while Carter was admitted, for over 30 days.
We didn’t want to leave him there by himself, and made a decision that no matter the cost or the exhaustion it would cause, someone would always be with Carter to be by his side and make decisions. He had just come out of a surgery that lasted way longer than 8 hours, and needed all of the recovery and assistance he could get.
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Now that we had made this decision as a family, we had to figure out how we could afford to stay by his side and not have parents driving back and forth from home. We were three hours from our house since he was flown from Camp Lejeune to UNC Chapel Hill Children’s Hospital. We also couldn’t afford over a month staying in a hotel room either. I had only been in the Marine Corps for five years at the time and didn’t make a whole lot of income. We also had a brand new child, Kinley, who was just born 2-3 months earlier.
Kelli had here parents in town at the time and they had come up with us, but they would not be able to stay there the entire time. We ended up having a rotation of someone who stayed with Carter and the others staying with Kinley, and when her parents left they took Kinley with them to help us out a little more. The biggest saving grace though, was the Ronald McDonald House.
Straight from there website is the following information
Services for Families
At every House, families can enjoy:
Playrooms for children
The generosity of volunteers and donors make it all possible. In return, families either stay at no cost or are asked to make a donation up to $25 per day, depending on the House. The RMHC Global Policy is that families are never turned away; if it’s not possible to pay, the fee is waived.
For us, we ended up paying $10 a night, and had a bed, shower, and food that was great during the stay. The house was merely minutes from the hospital, and created the perfect condition for us to stay at night and return the next morning with some much needed rest. We always had one person sleeping with Carter in the hospital to make sure he wasn’t alone, but the rest of the family had a place to crash at night that was better than the waiting area. Without the Ronald McDonald house, we would have been lost, unable to survive this hellish nightmare we were living in. For this, we will be forever grateful!
Check out their Website to learn more.
And their FAQ’s
Share any experiences you have with the Ronald McDonald House in the comments
If there is one thing my family likes to do, it’s going to the beach. Laying in the sun, playing in the water, watching the kids build sand castles, I mean just plain fun. Now take that image of the perfect beach day you see in the movies, and make it disappear. When you have a child with autism, it gets a little more challenging, but that doesn’t mean it can’t be fun. Here are a few tricks we learned in the last decade.
(1) Be prepared to have at least one person to always be vigilant and ready for the child to be a runner. Like discussed in previous articles, Carter sees a flying insect, he turns into Dash from The Incredibles. Someone needs to be ready to grab and go and make sure he doesn’t run through other people’s areas, or even worse, straight into the ocean.
(2) Be prepared to eliminate sand from the body. There are a number of ways, but rubbing with a towel isn’t one of them. The easy solution, use baby powder. We almost go through an entire bottle for two kids, but it works. A more challenging solution, is a pressurized stock jeep bumper shower. Yep, that’s right! We had a jeep in North Carolina that we drove straight on the beach, had the rear bumper filled with 12 gallons of water, and a wired in water pump and hose that allowed us to spray off the kids before we got back in the jeep. Cool, huh!
(3) Sunscreen, Sunscreen, Sunscreen. Super important, as we don’t want your child to be sunburned and miserable for a week afterword, especially someone with sensory problems. This could turn into a massive nightmare in no time.
(4) Talking about sensory issues, Carter loves the sand. As soon as we get there, he wants dad to dig a hole near the water that he can sit in and sift his fingers and toes in while watching the water. So if you have this concern of kids getting sandy, or even sand down their bathing suits, you should try and get over that phobia.
(5) Being sensitive to light is another aspect with Carter, which resulted in us buy a 12 x 12 canopy to take with us and put up to let him get out of the sun whenever he wants. We don’t force him too, but after an hour or so, he will stand up, head to the canopy, and just start playing action figures or stem. Once he is ready to get back out, he goes. No need to rush him or make him do what you want, we just allow him to be comfortable.
There are a ton of aspects that can be discussed here, like having a cooler for cold drinks. Buying a wagon because Carter burned his feet one time walking on the beach and is scared to walk from the car to the water. Looking for sand crabs that poke their head out of the sand and scaring the daylights out of him. However, it is important to understand that these children may not always feel things the same way we did as a kid, or have sensitivities that we may never understand. By watching and learning, we were able to adapt and provide a fun beach experience for the entire family, instead of us or him.
For the longest time, we could never get Carter to go outside and play. It was too cold, hotter than he liked, or didn’t involve video games or technology. Does Autism and being outside even mix, we sure couldn’t tell, or knew what direction to go. Until we did!
We went through a time where the only thing that kept Carter entertained was an IPad, in his bed, under his blanket. 😄 It makes me laugh to this day, as there was times when we would be looking for Carter, and then his blanket just started talking out loud with a light underneath.
For us, we were not super upset about realizing that Carters chances of being in the NFL had reduced, but we did want to try and get him outside and play as much as possible. Of course we always go outside with our kids, and are not the type to let them run wild around the neighborhood hoping they don’t get hit by a car. We wanted Carter to have a friend or two, and most kids enjoy being outdoors. Kinley has no problem in that department, and we don’t want to hold her back because Carter prefers technology over people. However we think a little vitamin D is good for everyone, (more about this in a later post regarding headaches). So if we could get him to play more outside, then it could be a win for everyone.
There are a few things to understand though. One, Carter hates flying insects. Like stated in another Post he would run off a cliff then be within 15 feet of a bee or fly. Second, he prefers, I don’t like to use the word needs, a tv playing in the background. He can’t be in his room without the television on playing some sound. He claims to be scared, and although it would be impossible to state this is true or false, we have to go with our gut and assume he really does have anxiety with no tv playing in the room. This led us to put a small tv in the garage on the LEGO table that can play a movie while he plays outside on the trampoline or in the driveway. It seems to work great, and he spends a ton of time outside now.
He also is a water fanatic. You set up a blow up water slide and he is there. It can have ice cubes floating around and he will still be swimming like a pro. No fear of water, unless a bee lands on it, then it’s off for the races. You want Carter to win the Olympics, drop a bee behind him on the whistle and he is gone. It’s not swimming, it’s running on water.
His ABA Therapist Carter’s Current Weekly Routine also plays outside with him, and Mr. Brandon is great at knowing how to push Carter just past the comfort zone to try new things and decide for himself if he likes it. This is important for us, as we feel Carter doesn’t have to bubble wrapped protected and safeguarded in his room 24/7. We want his gifts to be shared with the world, and let that smile and laugh spread through your heart. By paying close attention to his needs and fears, we were able to figure out a transition to get him outside and have fun. He even plays basketball with the family, although he thinks it is a massive game of keep away. Maybe it is, and we are the ones who are mistaken how to play basketball.
How do you get your child outside?
For our family, going to church is an important aspect in our lives. Many parents understand how difficult it can be to find the right church for their kids, especially with ones that do not offer Sunday School or youth programs during services. Does Church and Autism mix though? This was our challenge. This battle for us was constant, as we wanted to attend, but didn’t want to ruin the experience for others. This cat and mouse game was everlasting, until it wasn’t.
For us, Carter was a special case. Autism is a widely known aspect for kids, and many organizations prepare, or at least attempt, for such a child. With his VP Shunt though, this made it a bit scarier for us early on. What if he fell, bumped his head, or just looked different to the others kids? His shunt is an adult shunt that will stay in his head for the rest of his life, so as a child it looked quite big on the side of his head. This for the early on years was a scary reminder of how fragile their little heads can be. Of course nowadays, we understand that he can do so much more than we anticipated, and has been cleared by the doc to even play sports. It took us a while to trust others with the care of our children, both of them, with the fear of what could happen. We didn’t want to leave him with people we didn’t know, or let them assume the risk of something they didn’t quite understand.
Finally, after multiple attempts with large and small churches, we found one in Richlands NC that we could attend. We had plenty of friends there, and they absolutely had no concerns over Carter or what he said or did during service. At Richlands UPC they were very friendly, and loved Carter and Kinley very much. If Carter got a little loud sitting in church, Pastor Matthew Drake took on the challenge and got a little louder too. We even got involved and helped our with their spaghetti plate dinners and compared jeeps. Until we got orders!
“WE ARE GOING WHERE?”
Once we found out we had orders to Norfolk VA, the process had to start all over again. We were leaving the church where we felt like family, and didn’t know if we wanted to wait another three years and hope we came back to NC. Once again though, after trial and error and talking to friends as the therapy office, we found another great church to attend. This time, Community Church is an extremely Autism friendly community that has a great system in place to assist families and their children. Carter even has his own “Church Buddy” who meets us every Sunday and stays with Carter in the Community kids area and park during services. As long as we have our nametag and he has his (this is a good thing, security should be important) then we have no issues with drop off and pick up. Not too mention with his Church Buddy, we have a friend that we can write to and ask questions whenever we need.
Church is an important factor in our life, and as you can see from our experience, it doesn’t have to be a huge challenge to attend if that’s what you want. We didn’t feel watching services on the television was right for us, and felt the need to attend a service and connect. It took some research, some asking questions from us to others, and taking a chance and seeing how it worked out, but in the end it was all worth it. Most of the time, if a church doesn’t like having a child with autism around due to interruptions or making others uncomfortable, then that isn’t the church for us anyway.
Comment below your thoughts, or if you have tips for others trying to find the right mix of church and autism
For years, going to the movies was a non-existing part of our lives. Carter would talk too loud or even have a meltdown from something that he didn’t like. He would get bored or scared, and at times not even walk into the theater at all. To be completely honest, at one point we didn’t attempt the process at all. We would wait until we would go home to Tennessee and visit family. Then we would just have a mommy and daddy date at the movies. However, things have changed quite drastically. Autism and movies is no longer a challenge for us!
When we received our Permanent Change of Station (PCS) orders from Jacksonville NC to Chesapeake VA, we discovered the Cinema Café. Big seats with a meal and a movie, who wouldn’t like that. You can reserve your seating online, and guarantee the movie and where you sit. This prevents meltdowns by taking expectations and making them a reality. They also provide headphones for children in case the movie gets too loud. For us, it was a game changer, and Carter loves going to the movies as often as he can talk us into it. For those that know Carter, his go-to meal throughout the day is chicken and fries, and he could eat this for breakfast, lunch, and dinner. For him, it’s like going to an eating store with a large television screen (he calls all restaurants eating stores lol). There are a few times when something scares him, but we can easily talk him through it and offer him his noise cancelling headphones to calm him down. For us, the Cinema Café is great, and allows the entire family to enjoy a meal and the newest movie instead of waiting for it to come out on DVD. Even Kinley is a huge fan, who won’t ever say no to an outing at the theater. However, there is something that is important to talk about that I believe is the moral here.
To learn more about Carter (Click here) for our home page
Before coming to Virginia, it would be safe to say that we eventually assumed Carter was just not meant to go to the movies around loud noises and bright lights. We accepted the routine, and stuck with it. However, we couldn’t be more wrong, and we are ecstatic that we took that chance at the Cinema Café. You always want what is best for your child, but sometimes you get to a point where you decide certain things are not worth it. For example, after Carter’s brain surgeries in 2011, his left side of his body was paralyzed and he immediately needed physical and occupational therapy to regain strength and relearn how to walk again. So riding a bike was never a point on our mind, we was just assumed that it would not happen. How wrong we were.
This was a bad parenting moment for us, as we decided for him what his limitations were, instead of working with him to discover his strengths. To this day, we still are having difficulties with him riding a bike, as we waited too long to work with him. However, what a fun and interesting experience with Carter to learn what strengths he has and what amazing talents he has hidden throughout his persona. By not restricting him for fear of injury or him to be embarrassed or defeated, we are allowing him to discover himself what he can do and adding self-confidence. He even rode his first upside down roller coaster at Dollywood (link) last week.
Comment your experiences below on how to promote confidence and discoveries for your child.
Let’s just cut to the chase, when you’re preparing to welcome a child into your world, one of the steps on the checklist usually does not consist of your child having Autism. For our family, we did not find out until Carter was five years old. This was three years after Carter had already had a peach size brain tumor, three separate brain surgeries, and during his road to recovery from that experience.
Of course there were always signs, things that Dr. Google would tell us about, but easily excused for the brain tumor. Things like constant repetition, not talking, or setting up his toys into categories. He also spent a lot of time playing with his fingers in front of his eyes in a certain way, what we now know is stemming. This was something we had noticed about Carter early on, but was quick to dismiss it once we found out about the brain tumor. The only person that continued to monitor and ask questions was his mother, Kelli.
However, there are things that just absolutely amaze us about Carter that we will not categorize of why it happens, just that it does. For instance, his memory is that to be amazed by. He can listen to a song one time, and knows the words and will walk around singing it for days or weeks. Movies, also his thing, stick in his head and he knows all the lines of every actor. Let’s not forget about his Ipad either. When he was just 6 he began watching shows in different languages, and could talk to his ABA therapist in Spanish. He now watches his movies and shows in French, thanks Netflix.
On another note, we are also a military family that moves and transitions a lot, with a father who deploys pretty often. Carter has his moments that he needs help with, and we are working through those constantly. He doesn’t like bugs, especially flying insects, and will run across eight lanes of throughway traffic to get away. He also has his meltdowns when something does not go as he planned, or off schedule. If he is watching a movie, and the disk is messed up and quits working, you better prepare for the storm that quick follows.
All in all, Autism doesn’t define Carter, it is just something that is part of him. Most people who meet him love him from the start, as his heart is as big as they get. He sees the good in everyone, and will hug all those that let him. If you are just now finding out about your child and autism, research on your own and ask questions to those that are experiencing it. Feel free to subscribe to this blog as well, as we will attempt to go through every aspect of our life and share in order to hopefully relieve the stress of others.