I stumbled upon a story written by a mother of a 3 year old autistic daughter named Kate and instantly understood what she was telling about. Not needing to explain or apologize, not needing to repress active children, seeing your daughter/son express her take on the world for someone not from the inner circle around the children.
I suggest you read her post here: http://www.goteamkate.com/1/archives/01-2014/1.html
This is one of the main reasons we travel halfway around the world to Thailand for some vacation. The people over there is so in love with children that the special qualities of autistic children is nothing more than a spice for them.
It’s allowed to be sad. Sometimes it’s necessary to not be heroic or a beacon in the darkness. I think that living with autism close by can be a hate-love relationship and suppressing sadness will in end tear down the joy.
Take a moment to reflect over what could have been and then put those thoughts away again for the next year or so. If you are the least like me you will probably find strength and beauty in the darkest thoughts to help you focus on the extraordinary circumstances you have been blessed with and the wonderful souls that needs you.
I know I haven’t updated this blog in a long time, and I’m sorry for that, but I won’t feel guilty. The reason I have been absent is mainly studies. I have been studying at university half-time, working full-time and prepared for a forensics certification on my free time since this summer.
Now my university studies for this semester are completed and my certification is halfway done. There has been times when I’ve thought that I won’t meet the requirements for the certification (which , in my opinion, compared to other certifications is quite hard) I’m now starting to believe that I actually got what it takes to hold a CCE certification. Finally the boss at my work decided to give me a double rise of my salary, mainly because of the effort I put in to create a smooth and competent Incident Response Team.
So, now that you understand that I’ve been busy you probably wonder what this has with autism to do. Well, in my head it has lots of connections to my children and our life. I won’t lie and say it’s never hard to be parent of autistic children but in my opinion one gains much more than one loses. My gain is the experience that hard times are best fought through with discipline and elbow grease, only those who give up, or surrender the control to others lose. I also have learnt to focus on my goals, not on where I am at the moment.
My son has, just by existing, helped me sit late at nights and convert thousands and again thousands of hexadecimal bytes into files, to learn file signatures, to identify how different file systems stores data. He has helped me with my programing skills and I’m today programing C++, C# and Python with ease, and he has motivated me to continue to expand my knowledge with full time university studies next term on top of my work.
The reason is, how strange it may sound, my children’s future. I want to, try to become one of the better in my area of expertise. I wish to be able to pick my future workplaces with my son’s best in mind. Perhaps leave this cold winter, perhaps earn enough money to hire a full-time assistance at home as he grows older and needs more help.
I might be in doubt, and this might be my way to keep my head high, but I think that as long as I do my best I have no reason to feel guilt.
This morning, right after breakfast, my son was a little anxious and kept pulling my arm and it was quite obvious he tried to tell me something. I didn’t understand what he wanted, or perhaps I did, so I asked him to get his Ipad and show me what he wanted. Within seconds he had it in his hand and tapped two pictures before he gave it to me. “Geocaching” and “By Car” was what he told me and by that he decided how we spent this Saturday morning. For someone who can’t speak, verbally or with sign language, he’s starting to get good at telling us what he wants.
Geocaching + By Car
Most of the time I’m glad to live where I live. Here in Sweden we have “The Swedish Act concerning Support and Services for Persons with Certain Functional Impairments (LSS)” that brings me and my wife some extra assistance with our children. I’ve explained LSS earlier over here.
One of the more criticized parts of the LSS states that persons who fall into the “Certain Function Impairment” category has the right to aid with residence with special services for adults or otherwise specially adapted housing. The critique is not about the cost of these residences, it’s about the lack of functional and well managed residences that has been the talk among parents to persons with certain functional impairments so it’s always good new when someone decides to build or convert existing residence to a living for these persons.
On the other hand, when peoples ignorance puts obstacles in the way of a new residence for youths with autism and Downs syndrome, I feel a bit ashamed over living in a country where so many ignores others needs because of their own comfort. Last week there were reports in most major Swedish newspapers about a residential area called Glasberga, where the residents has signed a protest against the construction of a residence for youths with autism or Down syndrome. Some of the reasons for the protest where:
- The value of the residents own houses will drop since a LSS residence would lower the neighborhood status. A number of people states they would never have moved to Glasberga if they knew about the plans of a LSS residence.
- The residents can no longer let their kids play outdoors without adult supervision because of the youths at the LSS residence.
- Someone has heard of several cases where persons from these LSS residences has managed to escape and obtained contact with “normal” people with assault and possibly death as a result.
- They don’t trust Attendo’s (the caregiver) promises that the residence is aimed towards harmless, non-aggressive youths.
- According to the knowledge the residents in Glasberga has on the subject Autism, it’s not uncommon that autistic youth often is frustrated and violent.
One of the comments from the residents in Glasberga is:
“We aren’t against LSS residences, but they don’t fit in our area that contains so many children”
Here we have a group of youths with Autism, Asperger and Dawns syndrome that is in desperate need of somewhere to live in order to go on with their own lives by moving out from their parents. Before this Glasberga protest I’d think a residence like the one being built in Glasberga would be ideal for my son once he is old enough to move to his own living, I would even reconsider moving to Glasberga myself to live close to my son. But now, after the residents of Glasberga have tried to tell me who my son and my daughter really are, I’m just ashamed to live so close to so narrow-minded people.
The protesting residents of Glasberga probably doesn’t even understand how much they have hurt parents and people covered by the LSS with their comments. They probably don’t understand the lack of reasoning in their protest. And most of all, by acting as they do they will probably force their children to walk in their footsteps and become as frightened of the unknown as they are themselves.
I feel forced to beg forgiveness on their behalf as they probably don’t understand they are doing something wrong, just as my son sometimes does …
We are on an adventure!
Summer is here and with some time of from work we have big plans. This week we will spend as far south as you can get on the mainland in Sweden. We are attending a summer camp for autistic children and their families in Ystad, and we are counting on a lot of splashing in the water, geocaching and sightseeing.
Since Ystad is 8-10 hours drive from home we decided to divide the driving into 2 days and spend a night at Marstrand, a really wonderful place.
Thanks to geocaching we had planed the trip into 2-hour parts with a nice stop for lunch and coffee, and this alone, being able to plan a trip without knowing anything about the places along the road makes it worth getting a geocaching account.
Lunch was planned at a small hidden beach, just 5 minutes from the highway. This beach used to be a stop for the steamboat that was taking people around the lake Hjälmaren. A perfect place for some hotdogs on a disposable barbeque.
Old steamboat stop
Next stop was for some coffee at a motel that was built to attract people passing by once when this road was more used than today. Long time ago it was futuristic and, when USA was far away and expensive to get to, the USA inspired design helped bringing customers. Today it more looked like it was lost in time.
Futuristic motel complete with 60’s America-inspired decorations
Third stop for our first day on the adventure was at our destination for the day, the island of Marstrand. To get to the island we had to leave our car on the mainland and get on the wire-driven ferry, not that it was far between the mainland and the island but the ferry made it feel like it was more than 200 meters from mainland. A wonderful island in the far west of Sweden with some wonderful walkways around the island and just about enough geocaches to keep us busy until bedtime. Dinner was burgers but not just any burgers! For the adults they came with shrimp and lobster “coleslaw”, my son had his burger chopped into pieces and without any vegetables and for my daughter it came without vegetables or burger at all. Only french-fries for her. I know that some parents with autistic children avoid restaurants because of the menu, I’m just saying that if it costs more than McDonalds then they often can make special arrangements if you just ask.
Burger without meat, bread or vegetables.
After dinner we went to discover what the island had to offer and found a fortress, a lighthouse and more than a few stunning views. I often find it hard to take photos that show what I see but I think the scenery at Marstrand made is impossible to take bad pictures.
Small alleys at Marstrand, there is no cars on the island so there is no need for large streets.
Walking into the Carlsten fortress
Canons at the fortress
View from one of the higher points of the island towards Denmark
Rock-carving close to the high point
Guest-harbor was full of boats today
Sunset over the ocean as we saw it from our hotel.
We found a bench named “Bench for memories” and had to try it out.
The geocache we found here was named ´Summer paradise´and at close to 11pm we felt that this was a place to return to sometime
That lighthouse was as far as we could go towards west. Absolute magnificent walk out there.
A bit further and we are in Denmark.
My son was away the last week so there was no geocaching, and it’s just as well as I had to send my smartphone on some warranty repairs. I noticed how handicapped one gets if one is accustomed to the services of a smartphone and then suddenly the smartphone gets taken away from you.
But now both my phone and my son is back so we’ll soon be back on track with the tales from the trails.
On the other hand it was nice to get some “extra time” to place on different projects.
• I’ve managed to complete all mini-projects for the python class that I took part in at courser.org. This will be a valuable addition to my mystery cache solving toolkit as well as a good help for me in my work.
• I’ve had the energy to finalize my application to the CCE bootcamp and the certification so soon-ish I’ll be a certified forensics computer examiner. I’ve always said that I don’t need a certification to know what I can and can’t do but I’ve discovered that a piece of paper tells customers and employers more than my promises.
• Training. I think I’ve started to understand the thing with running. By changing my running style I feel an ache in different parts of my body and as long as the ache is in muscles I feel I can overcome it by training those muscles. I’ve reached the point where I can run 16 minutes of 30 minutes training and I’m confident in that I’ll be able to run 10 km in 50 minutes once I lose some weight. I’ve actually decided to take my son to Seattle once I reach that point, guess why?
• Model building. I’ve completed two of the planes I’ve had sitting on my desk for quite some while. I build models mostly in evenings while I wait for my son to fall asleep so I can get into my own bed without worrying that my son will wander into the kitchen or do anything else that he isn’t meant to do when the rest of the house is sleeping. Normally he sleeps well once he falls asleep but unless someone keeps an eye on him while he is trying to fall asleep he will get up before he falls asleep making it impossible to sleep.
Here in Sweden the spring has transformed into full summer, school has ended for the semester and I’m mostly concentrating on finishing of things before my summer-vacation even if it’s hard to keep focus when I’m thinking of all the fun we have planned for this summer.