True Reality

I had a tough day with our true reality. I saw this fella. Large, awkward, ....disabled....running his own wheelchair down the street. He looked socially awkward. My first thought was....Ooooo if Alistair could be just like him I'd be thrilled. It was an innocent and quick thought. It hurt. No I don't get use to Alistair's reality. No I'm not one to say " I wouldn't change him for the world". I'd change him in a heart beat if I could. I truly wonder if people really mean that when that comes out of their mouth or if its a way for them to sound like they have socially accepted their child for where they are at to an ultimate extreme. I love my little man...that's why I'd change him. I just want him to be happy. Have a good quality of life. Feel stimulated in his environment and not lay there feeling vacant because he can't access the stimulation or interaction he needs due to the fact his body fails him. The more time I spend with little Mr. Man the more I feel that he has a lot more going on between his two ears then people give him credit for. He doesn't do the social norms. He doesn't give you eye contact, he pulls his hands away....but he gets it. I'm not saying he's Albert Einstein but he's not a coffee table. He provides a much more positive sense of being when he's had a lot of positive things go on in his day. I'm fortunate to have a lot of good buddies.

One group of buddies are kidless and not married. We get together once every couple of weeks for a dinner at one of our random houses. The rest of us bring goods to eat and we basically have a good feast and solve all the worlds problems including our own. Its lovely. Well this past weekend we had a social during the early afternoon as the kidlets had to come with me as Jason has been incredibly busy. The kids loved it. The best part is it was a picnic in my buddies barn. I could tell by how his body reacted and his facial expressions that he was having a good time. The sweet smell of fresh hay, the wagging tail of the dog, and the fact that there were all sorts of people around giving him attention made for a good day for him and well a great day for me.....and well Francis...she seems to have an absolute blast where ever she goes. Warms my heart! Anyhow I'm just rambling but ya that whole reality of what my dreams are for Alistair really hit hard yesterday. So no I don't get over the fact he is a special needs kid. I guess I get somewhat use to it. However, it hurts. I plow through with a smile on my face but some days I think wow this is truly a life time commitment! No tears of your child leaving and going out to explore the world. No worries of whether your kid will pick the right or perfect partner in life. No concerns if they will pick a career path that will full fill their life. Its a whole other set of worries and fears and to be honest I learn a whole new set of them each and every day. Its heavy. I use to think that I'd finally get to know what the whole package deal was for Alistair and then I could move on and cope with that known reality. But noppers it just keeps changing and morphing and this brings a whole new list of concepts, ideas, and realities to research, explore, and consider. Its heavy. So one of the things I recently did was start up a facebook group called SPECIAL NEEDS FAMILIES OF NORTHERN BC. I've found that my biggest resource is other families that have been there done that. You'd think there would be some professional organization that would help you become aware of all the resources, benefits, grants, etc.....but nope. We're on our own. I've found that I've actually had to convince specialist/profesionnals that various resources are available. Is that not crazy or is that me? And no these are not resources that have just popped up but have been around for several years. I think man I'm just lucky I'm social and like to talk. Can you imagine the poor parent that dreads talking to others or just has no interest in socializing.....can't wait to get home and close that door? They are stuck! Anyhow, that brought on my idea of starting up a group that was focused on the North. There are all sorts of groups based out of the larger city centers but you get swallowed and so much doesn't relate to us. So not even a week old it seems to be proving a great thing. There is such a wide variety of parents from all over the North, with children with a massive range of concerns and ages. The bonding and support seemed to start immediately. And as for my part, I just started the ball rolling. It took no effort at all and basically now all I do is make sure we keep out the sales peps, curious onlookers, and those working with special needs as its for the familes. Anyhow, enough rambling on my end....must put this head to bed. Cheers and thanks for listening.....Juels

Another BIG backtrack





So maybe you wonder why I bother to do the back tracking thing. Well this blog has become like a diary of sorts for me and when I forget or don't have the time to post my pics and notes I feel the need to sneak them in. Sooooo here is another sneek from back in May.

I know I had already back tracked and put a note in about the ABM therapy we received while in Alberta. Well after that the kids and I headed just over an hour south of Edmonton and caught up with a buddy of mine that I made while in nursing school in Red Deer awhile back.

Anyhow, Candace holds a very special place in my heart. Almost like a sister really...I mean what do I know....I may as well call her my long lost sister LOL. Just an incredibly uncomplicated friend that really is such a breath of fresh air to be around. Love her.

So after driving all the way to Edmonton in one day and following it up with five days of therapy which included 2 hours a day of driving we were all ready for some down time. It was fantastic.

 Its hilarious really as we actually didn't leave the property AT ALL for the whole week we were there.

They had a great yard to socialize and get the kids out in and their place was just so cosy we bunkered down and let the kids have a blast socializing away.

Francis tried conquering stairs....

 

 .........reading books in a box.........

 .........and jumping in a bouncy castle...........

 We also spent a good deal of time in the backyard to all the kids delight

.....trying to stay cool....

.....and looking cool......

Meal time was always entertaining.





With all sorts of seating arrangements. 



Francis continually was entertained.

It became obvious quite quickly that

Ellie and Francis would be good buds for the week.

By the time it we packed up and headed home the brain was well rested and the heart was full from all the wholesome friendship talk. Hopefully I get back again next summer!

Grammy & Grampy

We are so lucky that Grammy & Grampy were able to come out for a couple weeks and visit us all. We were able to get in lots of visits and social time. Both my sister in laws family and ours were able to all get out for a camping trip down at the Bowron Lakes. Apart from the first evening of blustery weather we had a gorgeous weekend.

Jason and I have been toying with the idea of buying a newly used camper of some sorts but haven't really decided what we wanted. So while we are still pondering (and will likely continue to for several years) we decided to unload Jason's tool trailer and camp in it. It worked perfectly! Alistair crashed up at the front. We threw a thick foamy in the center and we set up a playpen for Francis at the back. With the little sky light up top and the side door we felt like we were living it up not having to worry about much of anything. It was so successful we will be doing it again here in a couple of weeks!

Fortunately, the next two days were great weather so we were able to sit out and enjoy the sun as well as the campfires at night.

We all went and checked out Barkerville, a historic gold rush town, for half the day as well. Our kidlets at this stage could have cared less to be honest but it brings back great memories of childhood field trips and family excursions.

Mind you Francis was quite delighted with the big stick of sugar she got to suck on that mommy got for her at the store.

In typical fashion we also filled up on a great lunch of Chinese food. I have to say they were so incredibly accommodate re. Alistair and the need for extra space. I have to say I was impressed.

As you can see Francis was just thrilled she had the opportunity to ride on Daddy's shoulders.

Driving in off the main highway 80km into Barkerville, once the largest city north of San Fransico and west of Chicago, it just utterly amazes me the perseverance that individuals must have had to arrive at this place from all over the world with the hopes and dreams of making it rich. Really it wasn't that long ago as it was just back in the 1860's. Its amazing to consider even how much has changed in the last 150 years!

Anyhow, we did bring along a kayak with me hoping I'd get a chance to get a little paddle in. It was short and sweet but just the opportunity to go for 1/2 an hour clears my brain so nicely. I then decided that I should take Francis & Alistair for a tiny tour. Apart from having to support Alistair from side to side I was impressed with how well we did.

I figured I had better put this photo in too just incase some people started to have a conniption because there were no life jackets on Alistair. Ha! We just skirted the shore line for a bit and he was seemed thrilled.

Francis loved being out and about with the ability to explore whatever she could get her finger tips into. I was able to catch her in this bunch of wild flowers investigating the basics of life. Love it!

Just before Grammy and Grampy left we celebrated Alistairs bday a couple days earlier so they could join in the celebration. It was so nice to have a big family gathering.

As usual the time just flies by.

But at least the times we did have together were so memorable and precious.

A BIG FOUR





In some respects its hard to believe that Alistair is four already but honestly in other ways its not. Its been a busy, life changing, and emotionally charged four years. I have never thought WOW isn't it amazing how quick he's changing although everyone would say "isn't it amazing how quick they change" I'd always respond "O ya sure is!" Who wants to hear your little violin anyway. You play it enough and people start disliking the sound of a violin. 

 

I wanted to get away from the birthday party with all the gifts that get stuck in the closet. He has had a bunch there for years. So many people with the best intentions give the worst gifts.

Honestly we struggle to get Alistair gifts on all occasions and because our society is geared to holidays and gifts going hand in hand its another reminder of what he can't do. So Jason and I actually started this last Xmas and that was to stop giving him stuff just for the sake of making ourselves feel better (and worse).



So for this birthday I blatantly said "NO TOYS...if you want to give something bring a helium balloon or a shirt". He loves his balloons by the hour and I love seeing him look smashing and healthy. I guess its the one of a few things that I can do for my little man. Hes still loving his balloons and as for his shirt collection he's acquired some pretty fab looking articles of clothing! I also like having a feast and celebrating for the sake of celebrating. Alistair knew everyone was there even though he doesn't show his enjoyment the same way as the typical four year old I could see his positive spirit for the day.



The thing I'm noticing from year to year is my friends are trying more and more. They are putting themselves in that awkward situation where Alistair pulls his hands away when you go to touch him, he rolls away from them, he his eyes dart into another direction. However, my buddies are learning the patience he needs.

A few (actually many) seconds later he rolls back in their direction, gives them a fleeting glance, and reaches for a short period of time in their direction. This warms my heart that people try. I know its awkward but we love our little man so much and we ache for his isolation and when people put themselves in that situation it just is the greatest gift our family could get that day. The attempt is all that's needed!



To be fair I constantly think of an old friend in first year nursing school who moved away shortly after that year. She had a little fella that had severe cerebral palsy who has sadly since passed away. Plus I've lost contact with her as well. But I always think of the times I came to her home and didn't make that effort and didn't understand the value of the effort.

From that life experience I 've come to realize I can't judge others for feeling awkward or not easily communicating with my son even if its as small as a touch of the hand. But I can educate, provide a patient and understanding environment and over years provide a community surrounding Alistair that will be understanding, supportive and caring.

He gets it people. I know I may sound like a fanatical parent but you get to know how to read the smallest cues of your child. The smacking of the lips indicating pleasure. The pull of the hand from another with a smirk on the face as slight as it may be. The extra roll to get a tad closer to another. Its there but its not the obvious indicators of the typical child. Anyhow, this blog almost has a negative tinge to it it seems but really I'm applauding everyone that is making that attempt to connect with my son and excepting into their lives even if its for a moment. THANK YOU so much as it made for such a special birthday for Alistair.

Anyhow, over the past six months I've been wanting to make Alistair an apparatus to hang his toys off of while he sits in his chair and then he can access them better. So I made the little thingy below. Can you believe that it cost me only $57 to make but if I had bought a similar thingy on off of a special needs sight it would have cost me $257!

I also go down to the Shop at the Art Gallery as girlfriend is the shop coordinator now. Anyhow, she brought in some vibrant water color paintings and since I was drawn in particular to this little turtle I figured it be another neat thing to give to Alistair.

Alistair's actual birthday we went and hung out by the fountain down town and bought this funky little turtle water color.

 Francis loves the water and just had a blast being at the fountain. It didn't take her long to get wet.

 Anyways we had a lovely birthday celebration over several days with food, family, and fun. Cheers Peps!