Cell Phones And Autism

I never had a cell phone until December. Even after I got it, I never used it much. Actually, I still don't. However, I do try to remember to bring it with me when I go, and actually get calls and messages on my phone. The majority of them come from Kaeden, who loves his phone and has had it since his 13th birthday.

Kaeden and his phone never part. I'm not sure why he likes it so much, but it's his and it's obvious he is in love. Sometimes it gets annoying as he changes tones and we have to listen to it all for hours on end, but the majority of the time it's just with him and he's happy.

One thing I have noticed is that when Kaeden starts to get angry, he texts me. Tells me he is mad, or is going to be mad, or hates the blankety blank blank teacher. I'm not sure if it helps to calm him by texting, but I have this hunch that maybe it does. When we are home, sometimes he lets me know via text that Jari is bugging him. When I get that message I know to put a stop to it immediately. There have also been times when I have sent him to his room and sent him a text message to tell him he may come out when he is calm. He messages me back that he will come when he is calm. We don't have to have conversation which often leads to more angry words. So, texting seems to have its perks, especially for my son who has issues with anger and aggression. It seems to sincerely calm him, give him space, yet a means of communicating, without spoken words which are difficult for kids with autism.

Further, texting has helped him in his spelling skills. Often I receive a text from him and am amazed that he could write it properly. He doesn't use all the codes that I have seen other kids use, but writes exactly what he wants me to know. Such as this afternoon, when he was on his way home from school, he texted me: Mama, I am coming home now. XOXO Kaeden Or after he got on the bus to head to Judo, he messaged me: Mama, I have to take a different route to Judo. There is a market in the town center.

Maybe it gives him security knowing I am always available, such as in the above situation which can be stressful.

When I reply I keep it short and sweet, but always try to respond. It feels like some special connection with him that I don't have with him in spoken language. I am discovering that his having and using his cell phone is his key to communication, especially under stressful circumstances.

I don't know if any of you other parents of autistic kids have had the same experiences with a cell phone as I have, but for us, it seems to be a positive bit of technology in the autism world. Maybe it's worth giving it a try?

Home

It seems like there is so much happening in life now that spring has sprung. The kids have tons of end of year activities, there are more events happening that we enjoy as a family, and the energy is alive as the flowers start to bloom and the veggies grow a bit higher each day. Hopefully, soon, the sunshine and warmth will also decide to spring.

Last weekend was a holiday weekend here. Erwin and the boys had off Thursday and Friday, and we decided to do some remodeling to our home, which took us the entire weekend to complete (well, complete? it's still not complete, but it's getting there...) And we are all happy with the changes, giving us a bit more breathing space and less junk filling every nook and cranny in our home.

The boys were set off on their own as we worked. I asked for them to do a few chores when they complained of being bored, but in general they were given free reign to do as they pleased while Erwin and I worked. They had time to play in the yard, soccer, computer, playstation, board games, toys all at their fingertips. And both of them thoroughly enjoyed just being home, having noplace to be, no time restrictions, no schedule.

As a family, our weekends are usually filled to overflowing with activity. We have soccer and Judo and shopping and a visit to oma and opa...we have an event or two thrown in here or there, a day to the playground (which we did do as a family on Sunday after "neglecting" the kids for a few2 days) or something that sound slike fun, such as visits to a museum or castle or the woods. Some days it feels as if we are gone from morning to night, making it home just in time to tuck the kids into bed so we can start it all again the next day.

And I (we) sincerely enjoy it, all the activities we do as a family. However, it was so nice to have no place to be, nothing pressing to do, able to just do what we needed to do and do it all at home. And what was interesting to me, was how the kids reacted to it. Both of them were in seventh heaven and commented time and again how much fun it was to just stay home. Even without our full attention, they were perfectly content finding things at home to keep them entertained. They didn't need to be out and about to stay busy. They didn't need tickets to this or that or a packed lunch or to put on their seatbelts. They were free.

We do lots as a family to keep us busy, having new experiences, learning, seeing new things. We all enjoy days out doing things together, whether it be a walk in the woods or a day at an amusement park. We tend to get along better when we're out of the house (once we're gone...the getting to and from a place is always an issue, esp as Kaeden adjusts to something new taking place...but we've all learned to deal with this and expect it). However, what I learned this weekend is that maybe we try to do too much. Maybe what we see as a relaxing day out, away from home, is not quite as relaxing to our kids as we perceive it to be. Maybe we need to try to just stay home more often, enjoying our home and our family in the place we've set our roots. We can still go out and enjoy all these other trips and experiences, but in smaller doses. Maybe our boys need home to be a place they can have fun too, not just fun away from home.

I think in the world today, kids are forced to grow up too fast, have too many activities to attend, too many pressures. And though I sincerely believe that Erwin and I balance our kids lives well, keeping them busy but not overwhelmed, maybe we need to consider balancing our family time home and away from home a bit more equally. This past weekend showed me that home is a place to enjoy life as much as it is a place to sit down, eat, sleep, and live.

The Saga of Kaeden

Yesterday arrived in an untypical manner with the morning starting with an appointment regarding our son. It was a therapeutisch project appointment, which means it involves all the agencies working with or previously working with our son. Lots of people, time, and energy trying to assist Kaeden in getting on and staying on the right track in life. Though I try not to, every time I attend one of these meetings I look around the table and am in disbelief at how much money my son costs the goverment and tax payers. And thankful that it doesn't all come as out of pocket expenses. And grateful that so many people are working for my son, to assure him a successful life, now and in the future.

Though many different areas of Kaeden's upbringing were discussed, the one that remains most hopeful and happy and joyous for me is the positive feeling surrounded by his living at school, in his home away from home. Yet again, we were treated to a very uplifting report about how well he does in the home, how he has friends and does his chores and never causes an uproar. How they get through the rough spots with him through humor, and how Kaeden has such a great sense of sarcastic humor. And though I don't need a report to tell me this, as I see it in his eyes or hear it in the excitement of his voice as he tells me a story, it's so nice to hear after years and years of always living with negativity, that my son is doing great! This fact lays a rainbow-colored layer over his less positive areas, like opening up a special prize and being rewarded with the one thing you have always wanted but never imagined you could have. I am truly just thrilled!

At school and at home, the verdict remains similar. Kaeden does well about 80% of the time but the 20% when things go wrong, it's something so big and bad that it throws a black cloud over the other 80%. His meltdowns remain filled with a frenzy of aggression and violence which put fear into those around him. Fear is not something easily forgotten, trust never earned completely back.

More news which was delivered during this appointment was a new school program they are working on implementing. This has me both excited and worried. It is a program not through the school, but through the group home, in compliance with school laws. It will be small groups of kids with issues exactly such as Kaeden (most importantly being unable to function with other people "getting in his way" causing him to rage out), supported by a full time teacher as well as additional staff. The classroom will be housed in a separate building from the home and the school, and the kids will have their designated work to complete, but with an allowance for them to complete it on their own terms, regarding time, place, etc.

Since Kaeden has been diagnosed with autism, it has been branded into me that this is a child who needs structure. That he can't function without a set schedule. That he craves a set forth plan. And now, in ten minutes, I am told that he is a first-choice candidate for a new school in which structure, planning, and scheduling is of the least importnace. It threw me for a loop. Kaeden needs assistance to accomplish what needs to be done. He can't even brush his teeth without having someone standby to make sure it gets done. Yet, they are going to give him the freedom to plan his own day, get through all of his lessons? That he is going to be responsible for managing his time on his own? Granted, his assistants will be there to help him, but this goes against everything I have been taught since learning about autism.

However, it excites me. My son, one of the laziest people I know (probably due to his inability to figure out how best to manage his time...too many outside factors which impact him), may have the chance to learn to manage his day and his time and his classes on his own! He may be able to figure out that if he first does his work, he will have the freedom to watch a movie. That if he completes his chores first, he can play a game of soccer when he wants, instead of only after school. That he knows what needs to be done, has the resources to ask for help if needed, and yet can do it all on his own. A completely functioning individual.

I have many more questions about this school and it's policies. I have questions about what coursework Kaeden will be allowing to partake in (woodworking is one of his faves, will he be forced to give that up?), and what will happen if he doesn't succeed in managing it himself. In addition, the school is still in the planning stages and they aren't even sure of all the logistics of it yet. But it sounds interesting. My son may be a guinea pig for this project. Am I willing to let him be?

So, that was a bit of news on the Kaeden front. I have to say, though I shivered and shook throughout the meeting (these things always have me a complete ball of nerves), I walked away feeling really positive and good about how things are going for my son. Though clouds covered the sky, it felt as if the sun were shining as I left the building. WE still have a long stretch ahead of us to assist Kaeden in becoming an independent, full-functioning adult. But it sorta, just kinda feels as if maybe, just maybe, we might be on the right track. Do I dare breathe a sigh of relief?

Not yet. But it does give me renewed hope.

A Moment of Awe

This weekend we went to the races. It's a drive a bit more than an hour to another world, still in Belgium. Spa. You may have heard of it? French-speaking, in the hilly region from where fresh water comes. Anyway, back to the races. We went to the races.

I have written about the races before. I love the Spa track as you can walk for ages and seem to never find the end, curving through forests, going down another hill, then climbing back up for another view of more trees set against another hill. And in between you see glimpses of the track. In some places you can even see the cars race by and then catch a glimpse of them 20 seconds later way off in the distance on another hill. Or, even better, you hear the cars. Their scream as they zip by you, barely allowing you to focus on their color as they go past in a foggy blur, the sound of their power pulsing through you. It definitely pulses, you can feel the blast of those cars engines in your heart, in your ears...and I absolutely love it!

It sort of feels like my own personal high. Like my drug of choice. I don't need it all the time to get by in life, but in those moments I am afforded it, I am in bliss. I sincerely am in awe of the cars, their engines and design. The tires so smooth and black. The way they speed across the track. Watching the mechanics and technicians working at an unbelievable pace to get a car back on that pathway to winning. It really is an amazing experience. (Unlike Nascar which did not even slightly light my fire).

After the races, we set the GPS to home, but took the short route through the hills and over the river, through little villages and past the blooming fruit trees. It was a pretty drive, a bit foggy, a few showers, but all looking so unlike home, which is an adventure in itself. As we drove down one road towards our destination, I took a picture and then realized what I was photographing. A sign with 4 stars naming the Henri-Chapelle American cemetery.

I have been to numerous American cemeteries in Belgium and the Netherlands. Each time I go, I am filled with disbelief and a sense of stillness. We stopped the car and though visiting hours for the reception were closed we could enter the cemetery itself through an open gate. We did.

The blue skies opened up and I was again in disbelief. Covering the cleanly manicured lawn of grass were thousands of marble crosses, creating a pattern over the vast ground. In the middle was an angel hanging in the blue sky, welcoming you to this valued place. This place where thousands (7,989) of American soldiers were buried after dying in a war. After a first glance, my throat closed and the stillness of the air surrounding me became my focus. My eyes misted over as I realized that this place in which I stood was more than just a memorial. This place housed the stories of all these men who were never able to return home in the welcome arms of loved ones. This place brought countries together in a world torn apart. This place showed courage and rage and forgiveness and insanity. It showed how much America was a place to be looked up to, the power with which to be reasoned, offering men, American men, to help achieve a victory and bring the world back to a sense of calm.

As I watched my two boys run down the rows of crosses, with a few Jewish stars changing the perfection of line across the grass, I felt a great sense of patriotism. It was these men who fought in a war to allow my children the freedom to run through grass, now on European soil. It was these men who gave their lives to allow my children to feel safe, for their needs to be fulfilled, as well as their wants. As I watched my children run across the grass, I knew that at this moment in time, they had no idea what they were running amongst. They will one day, hopefully, as they take their own children to such a place, a graveyard, a cemetery, and tell them to please be quiet as this is a place to honor great men who fought in a war. Men who gave their lives, for any number of reasons and most probably without realizigin what the outcome would be, but still courageous and giving heroes...and me in a moment of awe and disbelief and amazement...of which those race cars in Spa stand not even a second close.