Jon's Birthday Party

We celebrated Jon's birthday last week. He was thrilled to have so many come to his party..40 in all! As a rule he doesn't like large crowds but when it's his birthday he doesn't seem to mind..knowing it's 'his day' makes the difference. It took some time for him to eat..the table was filled with food waiting to be served. So once everybody had picked up their food and went back outside we cleared up part of the table so Jon could sit down and eat. That made all the difference, he sat down and ate! Anything revolving around food is often an issue for him. Jon did enjoy the food which was made with his 'likes' in mind..taco salad, bean dip, pork bbq, hotdogs and peanut butter eclair dessert. The pork bbq was amazing and prepared by one of Jon's staff.

After eating, he opened his gifts..he was funny to watch..if it was clothing he just threw it but the things that were precious to him went on his lap and after opening a few gifts he got up and left with his favorites. His Dad convinced home to come back to open the rest. His favorite gifts?..Rubber snake and a plastic sword! And of course he could hardly wait for the fireworks which he had received as gifts.

At the end of the party we had a great show of fireworks. One of the photos shows us all looking up in awe:)

I think Jon went to bed dreaming of his birthday party and sniffing the used firework tubes!

Who, please tell me WHO?! Does not love their mum like this kid does????

This Kid loves Jesus!

 CAN I GET AN AMEN! 

Chainsaw's Apple Tree's and happy Brother

When it came time to cut down the old apple tree in my back yard I knew just who to call Dad with his Stihl Chainsaw and my brother Jonathan.

I decided to record the fun and share it with all of you

http://www.youtube.com/watch?v=oHW5UlBF7UQ

Jon's Pad

A few photos of Jon's pad..home sweet home!

Jon's Staff and Shedule

A photo of Jon and some of his staff. Jon has 9 staff that rotate. They usually work 6 hour shifts. Weekends and nights are longer shifts. His night staff is awake, to be aware if Jon should have a seizure or need help. His staff are a great bunch and desire to make Jon's life as happy and fun as possible!

Jon has his own program mapped out for him more or less as his mood dictates. There are routine things that he does like helping with the grocery shopping, taking recycling to the depot, taking his clothes to the laundry room and has learned to start a load of wash, taking his dishes to the sink and such.

He lets staff know whether he wants to go somewhere or stay home. Of course he is willing to go out when it's something he thinks will be exciting. In the past few months he has already been to see fireworks a few times, to the Red River Ex where his main interest is going on all the crazy rides and has made a trip out to the snake pits.  And tomorrow he is going horseback riding.

Sometimes it's a challenge to come up with ideas for things to do and that Jon will want to participate in.

Jon moves again..

After some searching the right house for Jon was found. A little house in the country with a big yard, lots of bush and a shed just for Jon. He was delighted with the place and as some renovations took place before he moved in, he was allowed to see the carpenters work their magic. Jon was right in there almost bumping elbows with the carpenters not wanting to miss anything.

Some walls were removed for bigger spaces, fresh paint applied, new furniture purchased..everything for a manly look. The day came that the house was ready and Jon could move in. This house was refinished for Jon's needs. The walls were finished with plywood and painted to prevent holes from head banging, windows were protected with plexi-glass, light fixtures covered with a 'nautical look'..really it's to prevent him from unscrewing the light bulbs. (isn't that a nifty idea??) And he has a built in box for a lava lamp and a marble maze in the wall..now that's what I call thinking 'out of the box':)

Another special feature of this house is that it has only a crawl space instead of a basement..Jon loves to open the trap door, lay on his stomach, peer into the empy space as he dangles ropes and cords.

That day when he first entered his new finished home you could tell the joy on his face..everything was in place, even his clothes were in the closet. He is happy with his new home and hasn't ever indicated that he didn't want to go back to his place after a visit to Mom and Dad's house.
We are so thankful.

Beautiful Everytime

The way I see it, life is a beautiful adventure. A chaotic, madly beautiful unplanned adventure.

There is something great and inspiring about watching parents raise a child that will never fully be able to take care of himself.  That’s how my grandparents – the relentless, never-say-die fanatics of all things unique, got caught up in a boy that has taken their lives down a path they never could have planned for. There were no stodgy conventional parenting plans for the ride, there couldn’t be – just starry eyed faith and a strong heart. They set out to help Jon live the most ‘normal’ life he could, but instead gave him a unique life (what is normal anyway??)

Jon was raised in a hard working, down-to-earth family.  They didn’t know it back then, but all of us (including Jon) were learning the basics of life first hand.  Basics that can’t be taught in a textbook.  Country life, homemade food, and honest people laid the foundation for the road ahead.  My grandparents worked hard together and finally, after years, decided it was time for Jonathan to be independent, as independent as he could be and move on to new latitudes.

Jon Boy now resides in his own home. The raucous and rowdy home out in the sticks. He believes every mans trash is truly a treasure, being outdoors is a way of life, and balloons are his rodeo drive.  He’d rather be outside in the quiet country air then in a loud, over-packed place with people. (I think he may be on to something)

As you’ve read, you know the journey hasn’t been easy. A few wrong turns, a few road blocks along the way, but my grandparents have fought the trenches with their never-give-up attitude and always dreamed BIG for Jon Boy.

They believe in learning something from every pitstop and every path along the way. They believed in his beautiful, wild human spirit and that it only grows richer and stronger day after day, year after year. 

I TOTALLY and FULLY believe Jonathan is where he belongs.

Finally.

Kaila

Jon Moves Out

When Jon was 22 years of age an opportunity opened up for him to move into a home with 3 other men with special needs. I was nowhere even close to saying yes but after a lot of prayer we decided that we would try. I cannot begin to express how very hard this was for Jon and for us as parents. I must say that in the beginning it seemed like Jon adjusted quicker than I did:) He had some good times here but after some time we knew that he was not adjusting as well as he should. Because he shared the home with 3 other men he found it much too busy and too loud which he doesn't do well with at the best of times.

The last year that he lived in this home was a very difficult one and he called out for help in the only way he knew how, by being very destructive and injuring himself as well. In these moments of frustration he would throw whatever he could lift and bang his head against walls. Twice he broke the living room window, by banging his head against it really hard. He also put a lot of holes in the walls with his head. His home started to resemble a war zone. I'm sure he must have had some concussions. One time he struck his head hard on a broken chair and ended up with black eyes and we believe a broken nose. The doctor checked it and seemed to think it was better to let it heal without surgery. When outside, he would frequently bang his head on a rock. He visited the ER so many times. One time I remember the doctor saying that he couldn't keep doing this as the flesh was so 'mushy' and wasn't healing well enough in between gashes and that he couldn't stitch it properly. Try to imagine those hospital visits..not pleasant. He had started wearing a helmet during this time and had to wear it most of the time especially during those times of frustrations.

Jon came to stay with us every weekend and when it came time to take him back to his home he didn't really want to and often put up a fight. Our walls at home didn't fare any better then at his house!

It was decided by all involved that it would be better for Jon to move to a new home where he would live by himself with 24 hour staffing. Getting funding and a suitable home had to happen first. After applying for funding, the 'go ahead' was eventually given to search for another home for Jon. We are very thankful to enVision who worked hard to accommodate Jon's needs.
These were very difficult times but God supplied the strength needed.

Philippians 4:13 ' I can do everything through him who gives me strength.'

Day Program

After Jon graduated from high school he was ready to enter the day program. He had been going there once a week for some time with an EA from the school so that he could adjust to the new environment. He was hestitant to become involved. His first 'job' was to help make plastic flowers. Jon was not impressed and everyone around him found that out very quickly. They came up with different 'jobs' for him and some worked okay. Some of the jobs were recycling and paper shredding. I think that for Jon there was just too much extra sensory overload for him at this day program as there were many clients in the same building and the noise disturbed him. He seemed to like it best when he had something to do outside or was taken out for drives in the country. Staff had to find ways to keep him busy and entertained and they did a wonderful job. One staff used to put items in the trunk of her car that she knew Jon liked and would let Jon rummage around in there and take what he wanted. Jon enjoyed many outings..swimming, going to the snake pits, the planetarium, amusement parks, the zoo, bowling, movies, visits to parks and lakes and many others. Jon was in this program for a number of years before it was decided that he would do better with his own program managed from his home.

High School Grad Photos

This photo was taken after the grad dinner.

Here's the grad photo.

This is when he got his diploma.

High School

Once Jon's elementary school years were done he moved on to high school.

There he joined another special needs class. After being there for 4 months we found that funding for him at the developement centre directed by enVision, was in place. Although we would have wanted him to stay at the high school a little longer as he seemed to enjoy it there we knew we couldn't let this funding slip by and knew that he would be needing it in a few years anyway. So he moved to the centre. That June he graduated with the rest of the Grade 12 students at the high school:) We tease our daughters about this..wondering why they didn't graduate that quickly! While in high school Jon learned more of the basic life skills, a continuation of what he had learned in elementary school. Jon's grad went really well, he actually sat down for the meal with the rest of the high school grads, the regular classes as well as the special ed class; the school gym filled with grads and parents. He looked really good in his black dress pants with a black vest, a mustard colored shirt and new shoes that didn't have velcro closures:) He knew it was his special day and smiled a lot. The gym where the meal was held was filled with a lot of helium balloons and that being a favorite of his, held his attention for most of the meal time, surprising his teachers and his parents!! His sister was his escort and Jon was thrilled to have her at his beck and call:) After grad we took Jon to our place of business where we sold chainsaws, another favorite of Jon's, and had pictures taken of him and his Dad with the chainsaws.

Note to self..locate and scan some of these grad photos so I can post them.

Kindergarten and Elementary School

When Jon reached the age of 5 we wanted to send him to kindergarten but our school division didn't accept special needs children at that age as there was no program in place and we were told he would have to wait till the following year. Together with two other parents we decided that our boys could not wait and so a kindergarten class was started. EnVision (read about them in the sidebar) stepped in, hired teaching staff, and found a room at a local daycare where the classes could be held. Although that meant that we would have to pay for daycare costs even with our own room and teachers. Approx $ 800.00 was our cost for Jon's kindergarten that year. The following year our school division had kindergarten classes in place for everyone. A special education wing had been added to a local elementary school and Jon boarded the bus every morning with his sisters to attend classes. I felt so relieved knowing that his sisters would see him safely to his class. He had some difficult years at school but also some better ones. He connected well with some of the teachers and challenging as it was for them, they made school more enjoyable for him. There were many times throughout the years when I needed to pick Jon up at school because of behaviour problems. I think Jon grew wise to this, knowing Mom would be called to get him if he misbehaved and home is where he wanted to be.

Communicating

When Jon was around the age of 2 he was saying a few words and started to string some words together. Then followed that period of many seizures that I mentioned in the post on finding the right medications. During this time he lost all his speech and has not regained it. We tried various ways of trying to teach him communication skills, first of all sign language but with being autistic as well he had a lot of hand waving and fluttering happening so it was confusing for all of us. We then tried the 'picture book', a book that he should carry on him, take it out and point to the pictures to say what he wanted. This was not successful either and very frustrating for him and he let us know it! The book was thrown across the room many times. In hindsight I wish we had perservered longer but we did the best we could at the time.

Jon has not learned to speak and he communicates by pointing and showing us what he wants. This is often very frustrating for him as we don't always

understand what he wants. He doesn't handle this very well and will throw things and bang his head on the walls. I can only imagine how hard this must be for him.

Crawling and Walking

We were told by our doctor that we should not expect Jon to crawl or walk at an early age. The right side of his body did not function properly. When he started to crawl which he did before he was a year old, his right leg would drag and his right arm would drop. But he didn't give up, he would get up on all fours and try again, although he just couldn't master it. And so it became a 'get up on all fours, drop and slide' kind of crawl.

Then at the age of 18 months he started to walk, at a much earlier age than we had expected. And once he could walk he would sometimes revert back to crawling which he now could do much better. His right arm continued to hang limp and he couldn't use it properly. We were told that we needed to do therapy. It was suggested that we should try to encourage the use of the right hand by getting him to do things with it. Oh how we tried and oh how frustrated he was! Eventually he did start to use his right hand although his left hand has always been his dominant one.

I couldn't locate a photo of Jon learning to crawl or walk, this one is of him 'fluttering grass'.

Toilet Training

As Jon's young years went by I often wondered if he would ever be toilet trained. Would the day ever come that I wouldn't be hanging diapers out on the washline? As much as I enjoyed the sight of diapers flapping in the wind I really was looking forward to the day when it would end.

We did the same with toilet training as we had done with the others tasks, following the Portage program. This seemed rather daunting as Jon needed to be taken to the bathroom every 30 min. I hadn't ever thought about how many 'half hours' there are in a day; my life revolved around bathrooms:) Jon resisted and week after week went by without success. Then one day he either realized what I wanted of him or it happened by mistake, our first success! I praised him over and over..I'm sure I was more excited than he was. He seemed to understand what was expected of him and rarely had an accident after that. He was nine years old at the time.

Learning to eat..

Learning to eat by himself has not been an easy journey for Jon. He didn't know what to do with a spoon or how to pick up a piece of food and put it in his mouth. When he was 2 years old we started a program for him called 'The Portage Project'. A trained person came to assess him, then together we worked out a program for Jon. During the week Jon and I would work on a certain task and chart the results. Then at the end of the week the teacher would come back and we would decide whether Jon had learned this task well enough and was ready for the next one. Sometimes we stayed on one task for numerous weeks. Learning to eat was one of them. Jon did not know how to pick up food, take a bite or chew. These simple tasks that we take for granted were not simple for him. I would set up a mirror in front of him at the table so he could watch what was happening. Then I took a soda cracker and 'sort of forced it' between his teeth, all the time encouraging him to watch in the mirror, then with both of my hands I would move his mouth so that his teeth would meet and he could hear the cracker break. We did this over and over throughout the weeks until he learned how to do it. It was the same with chewing, here I would move his jaw around with my hand so he would feel and hear the cracker being chewed. Soda crackers dissolve quickly, that's why they were used for this task.

By looking at this photo no one would guess how long it took for Jon to learn to hold a spoon. At first I wrapped cloth around the spoon handle so that he could have a grip on it. Then with much encouragement I would guide, more like force his hand from the bowl to his mouth. There was constant resistance from him. Then slowly as he accomplished holding the spoon I would gradually move my hand to his wrist, then to his arm, elbow and finally when he got that, it would often just take a wave of our hand over the bowl for him to start eating. We used to say that we were 'blessing' his food. Many weeks were spent in doing these tasks. He was a picky eater and it was hard to introduce new foods.

This photo makes me smile, I think he is saying 'do I have to eat all this?" :)

The Right Medications..

After we came home with Jon from the hospital we were faced with trying to get his seizures under control. With the neurologist's guidance we tried various medications but none of them seemed to work. Some of the meds made his gums grow while others produced hair growth on his body.

During this time his seizures were increasing and he had many falls. Quite a few trips to the ER to stitch up his lips or other head wounds. He would fall forward very hard when seizuring. We tried to protect him as much as possible, made a thick padding on his high chair table so that when he seizured he would not hit the hard surface. We also purchased a helmet for him. There was no helmet to be found in his size so his Dad fashioned the smallest hockey helmet we could find to fit him. As Jon learned to crawl he really needed this helmet as he would so often hit his head on the floor as he seizured. One day I counted 35 seizures. After the seizures he was very tired. He had started to string some words together but after a week of these intense seizures he lost all speech and it never came back.

During this time many trips were made to the Children's Hospital in Winnipeg to see the neurologist. We were desperate to find something that would help our son and then finally we got the news that there was a new drug available that had been quite successful in Europe and was going on trial in Canada. The new drug was sodium valproic acid. We were apprehensive but really had no other choice. Jon was one of the first ones in Manitoba to try it, we had to sign for it and for awhile there was no cost to us.

During this time we had asked for prayer at our church that this medication would be the one that would help and God answered these prayers in a most wonderful way. Jon's seizures decreased dramatically two weeks after starting the new meds. He still had many seizures a day but nothing like it had been.

To this day Jon is still on this drug (plus a few others) and although we have had to adjust the amount as he grew it has been the best one we have tried.

...stay tuned for more

Jon's Diagnosis

I have been blogging of Jon's interests and decided that I should give a little history of his life. Our son Jonathan was diagnosed at the age of 7 months with tuberous sclerosis (TS) More info of tuberous sclerosis at http://www.tscanada.ca/. At first the general practitioner thought it was colic but then reconsidered and sent us to see the pediatrician. Within minutes of seeing Jon the pediatrician suspected that there was brain damage and what had been thought to be colic were really seizures that he was having. He was admitted into the hospital where he underwent a lot of tests during the following week and it was discovered that he had TS. His prognosis didn't sound encouraging, we were told that he was severely affected and that he would never function at his age level. We were devastated and with heavy hearts we took our son home not knowing what his and our future held.

...to be continued

Rocks

Jon has always loved rocks! From a young age he has been fascinated by them. He loves to roll large rocks to see what's under them and will ask others to move them if he can't. Smaller rocks he will roll down a large hose and listen to them tumble along. Sometimes he will ask to have the rocks moved to a new location.
Nothing like a pile of rocks to excite this boy!

The Shed

Can you imagine having your very own retreat..to go there whenever you want to and to do as you please when you get there? This shed is that to Jon, it is his favorite place to hang out. It is bright orange and you can spot it immediately as you approach the yard. Jon has an old rocking chair in the shed and spends time there rocking and contemplating life. This is also the place where he stores an assortment of interesting things he treasures. Things like rubber snakes, pieces of broken drywall, a dryer hose and other odds and ends.
Truly his paradise!

Thursday's Trash

Any words needed? Had this happened yesterday I would just have labelled this post wordless Wednesday. Jon whipped this plant down the stairs in a 'moody moment'. Apologies have been offered and accepted.
We move on.

Jon's Game

Jon loves a game of pool! It doesn't matter that the rules are his own. His rules are simple and easy to learn.
First you drop the ball in the pocket, then look to make sure it dropped, then place your ear close to the pocket and listen to the ball roll down the groove or whatcha may call it. I'll need to ask Jon..he knows his game:)
Simplify life..it's that easy.

Jon Visits a Dairy Farm

In late summer Jon went for a visit to a local dairy farm who had open house and were featuring robotic milking. Before we headed into the barn we registered as guests and were offered chocolate milk.
Jon seemed impressed with the large barn and all those cows and we watched a cow being milked by a robot. But of course he liked the fans the best, a little wandering on the farmyard found us close to some large fans and Jon was quite insistent to get as close as he could.
The cows and calves were more interested in Jon than he was in them..they reached out to sniff him but he just ducked his head into his t-shirt. Jon watched while staff allowed a calf to suck his fingers. There was no way Jon was going to allow that calf anywhere near him:) Can't blame him..that is kind of slimey!
A wonderful outing for Jon.

Jon's Gravy

Have I mentioned how much j-boy loves his gravy? And when I say love, I mean truly. Madly. Deeply. He loves gravy. And it is a scientifically-proven fact that his gravy makes any food taste all the better. And on bad days, that gravy is like a little piece of heaven in his mouth. Hot and creamy and smelling all warm-y, soothing-y, and gravy-y. In his world, it’s the perfect topping. The perfect taste. Quite simply...the perfect gravy. And may God grant mercy upon the poor soul that might happen to stumble into the kitchen before him and unknowingly eat HIS gravy.

Now – if you’ll excuse him. I think he wants some more gravy.