Props are fun

Props are fun               

Being part of the solution

As you might remember I have been having issues with doctors as of late.  With our primary doctor deciding to change his focus to sports medicine and with us not being, shall we say, sporty we have been left to find a new doc to take us on.  I have been to no less than six meet and greets as they call them and though for the most part the doctors were willing to take us on there were some that I didn't feel were up to the challenge.  Whether it be with their demeanour or the the fact they presented as though they graduated bottom half of their class I just didn't think they would be a good fit.  You might think I am awfully picky to have seen that many doctors and deem none of them suitable but that really isn't the case.  I promise.  All I want is for someone who I can tell knows more than me and has a bedside manner that would suit my most uncooperative kids.  Being that I'm not that bright it's not a hard bill to fill. Really.

After one of the infamous meet and greets where I had given one doc a second try with a different kid (trust your first impressions!) I called up my friend the paediatrician or rather texted in all caps "I NEED TO GET INTO THE UNIVERSITY!"  

The biggest problem I am having is finding physicians that were somewhat familiar or hinted at being comfortable around very tall nonverbal toddlers.  I say this with all respect for my kids.  The average functioning level around here is about two years.  I need a doctor that is going to treat the kids respectfully but meet them at their level.  I don't mean baby talk etc but approach them in that extra friendly way that you do when talking to children.  I figured since meeting six doctors and not finding this I or rather us as a family had to be part of the solution.  We needed to get to these doctors while they are still in school.

My friend. great as she is made some calls, sent some emails and whamo! I was talking with one of the profs teaching first year medical students.  They were looking for families of children with special needs to have students interview to learn about all the issues families are dealing with outside of the health conditions of their child.  They then would go back to the whole group with their findings, discuss and then after that I don't remember.  I was more than thrilled to bring these young assumably brilliant minds into the house and tell them everything that I could think of that would help families with kids with special needs in the future hoping against hope that they would still remember a sliver of what they heard and saw here.

Due to a shortage of families found to participate in the interviews and my abundance of children we hosted two different student pairings.  The first night the students came to discuss the two youngest kids.  Malia of course was her charming self and the littlest man did his utmost to secure his share of the attention with his loud vocalizations.

Malia and the littlest man have very different needs but both are complex.  One's needs are obvious while the other has challenges that are visible to outsiders but whose biggest challenge is invisible.  Points I thought important for them to know were the hurdles and barriers in the community for kids with special needs and this includes relationships with the schools.  Parents can be bombarded daily with voice messages and emails with staff wanting to have discussions about one issue or another and of course these are not always positive.  Providing extracurricular activities both for enrichment and socialization require the same effort, organization and relationship building to set the stage for success that the school takes.  There are challenges that affect families physically and financially.  I showed the students how the littlest man's wheelchair works.  Because his chair is a tilt in  space it does not fold.  What if your family vehicle is a small compact car?  How do you transport child, chair and anyone else that normally rides at the same time?  The pieces of equipment that kids with physical disabilities have are heavy and not all parents are capable of managing them.  What happens when your non ambulatory child's size exceeds your own?  What if you can't afford the adaptations to your vehicle and home?  What if your child is sick a lot and misses a lot of school thereby making you miss work placing your employment in jeopardy?  These are all stressors families with special needs kids face.  These and a million more.

The second night I let Journey have a go at the next student pairing.  Journey has a couple of syndromes that have offered her a lifetime of chronic pain and other issues that have lead to many interactions with a variety of medical professionals.  Now that she is almost grown she is able to speak for herself in regards to what she would like to see in a physician and what her challenges have been outside of the doctor's office.  The students were duly impressed as they should have been as my girl is pretty remarkable.

As the students were leaving I was able to talk more about my other kids and some of the things that would make for an interesting visit in the doctors office.  Donovan is a good example.  Though much of his speech is barely intelligible he can answer yes and no questions.  He is also very clever at reading your body language to know which answer you expect from him.  Yes does not always mean yes and no not always no.  Now Donovan and others like him as adults would not likely be in an exam room alone so in that instance as is the case for the nonverbal patient the mother, the caregiver, whoever is in attendance is going to have to be trusted to be the interpreter.

The final piece of advice I offered was that they expose themselves to all different populations.  It is hard for me to believe that in this day and age in a first world country that there are so many physicians who have had so little contact with adults with severe disabilities.

I hope we made a difference for these four students.  It is my desire to have more opportunities to be a part of the educational process for up and coming doctors.  I have complained long enough with little result so what is the saying "Be the change you want to see in the world"?  This might not be completely appropriate for what I am talking about but the point remains if I want things to improve then I need to be an active participant.

Fingers crossed

I am grateful...really I am for the adult day programs my big kids go to. I think for the most part they like my kids and maybe even do their best to provide for a stimulating day. That being said there is just so much improvement that needs to be done. There is a lot of accountability paperwork happening that we all know keeps the bureaucrats happy but there is little follow through down to the people they serve. We are in need of high quality staff that are paid what they are worth. We need staff whose English both spoken and print are intelligible and who have a working knowledge of Canadian customs, pastimes and traditions. Above all we need staff with high energy, creativity and common sense. I know my kids are tough, really I do. The point remains however they need staff who are on top of their game every day. OH HEAR ME PROVINCIAL GOVERNMENT!

It's a messy job all right

After school making muffins day.  This dolly loves to work in the kitchen.  I have learned over the years how to be much more patient with 'helpers' in the kitchen.  I have always encouraged it though remembering how much I wanted to be apart of baking when my mum did it but in the olden days of children seen and not heard the most I could hope for usually was to lick the beater and scrape the bowl.  It was worth the wait even though I didn't get to participate so I won't complain too much.

Raising kids with special needs especially ones that are going to live independently I have to be more intentional in how things are done.  First I have worked too hard to build this family so in no way subscribe to the seen and not heard style of parenting.  I want to hear and see it all.  Time is short.  Secondly my kids are not just going to pick up skills.  It's not a matter of waiting until they're in high school in hopes that they will be taught all there is to know about surviving in the kitchen or life in general.

The most important thing in parenting is being present.  We need to put in the time to really know our kids and for them to know us.

The more time we invest the easier it is to see where our kids strengths are and where they need more support.  It sounds like such an easy concept but one that is missed by many.

I know that I miss many opportunities to engage with my kids.  It is never about being a perfect parent but aspiring to be the best parent you can be for your child, not for everyone else's child but being the parent your child needs you to be.

Parenting is messy in every sense of the word.  Finding the fun, humour and joy even when it is as dirty as it can get is where survival lies.

It is oft heard said that there should be a manual handed out at the hospital as you leave with your newborn baby.  Unfortunately and fortunately there are no such instructions as each little person is an individual.  There are set rules to guide us but raising kids is a fly by the seat of your pants job.  Rules such as don't beat your kids, teach your kids not to beat on others, feed, clothe and educate them and above all ensure they feel loved and secure are the starting basics.  As long as those are your starting points your kids will show you what they need from you as a parent.  It might not be what your neighbour's kid needs or your sister's and each of your children will require different things from you.

Be present with your kids, live in the moment as much as possible and parent with intention.  You are not just growing up kids you are raising them to be adults.  It's serious business.

No one said it would be easy but man oh man is it worth it.

Archie comics?

On the news last night one of the top stories (or so it seemed as I saw it three times and again this morning as the news repeats the stories every half hour) was of a man who has spent two years researching Archie comics.  TWO YEARS.  ARCHIE COMICS.  Then he wrote a book.

I have many questions and concerns about this most importantly and top of my list....
did anyone PAY you to spend two years to read comic books?

Furthermore....

there is an orphan crises in many parts of the world
climate change is threatening the earth
populations around the world are starving to death
genocide exists
terrorism is spreading
children are spending their lives in foster care in North America
thousands of diseases remain without cures
etc etc etc

That all being said and you thought your big brain was best spent researching and studying the intricacies of the personalities of fictional cartoon characters and their relationships with other fictional cartoon characters?

I have to say I think this project beats the funded research project regarding the cause of obesity in cats.
I realize I am not that bright and definitely do not have any neuron in my brain that is scientifically inclined but isn't this an "uh.....duh!" sort of question?

Speaking of "uh....duh".... is there anyone on the planet that has read Archie comics that doesn't know that Betty was a stalker and Jughead a pothead?  I don't think it takes two years to figure that out!

I don't know.  Maybe I'm just cranky.

And you wonder why I crap on the floor

Adults and severe cognitive disabilities

Ack!  I am getting more and more frustrated as time goes on at the discrimination, fear and and lack of acceptance of adults with cognitive disabilities.  It might seem odd that when some of my kids have been adults for a long time that this is becoming more of a problem for us.  It might be that we have been living in a protected bubble for so long by having had professionals surrounding us that have known us for decades.  This ended last year when we lost our paediatrician and the big kids lost our family doctor.  The biggest part of our family doctor's charm was that not only is he an excellent physician but he was raised with an older brother with severe autism.  My kids loved him and he couldn't have been better with them.

I wish I could say it was the general public that was having more of an issue in regards to adults with severe cognitive disabilities but unfortunately it has been more professionals.  Doctors and dentists both inpatient and in the community, social workers etc the list goes on.  These are people that should know better however their fear, stereotyping and even intolerance exist none the less.

The hour is late so any hope of coherence will soon be lost but this is a subject I want to write more on.

Let me leave it at this....adults with severe cognitive disabilities are just as loveable, adorable, valuable and any other positive adjective you can think of the day after their eighteenth birthday as they were the day before.  They deserve the same degree of compassion and respect as any other adult with the added twist of requiring an acceptance of the fact that cognitively they are not adults. This fact should not make them scary.

         

adorable

What do you say?  Postcard worthy photo or indication of world's most reckless mother?

I would suggest you blame it on my youth at the time but unfortunately I wasn't young enough for that excuse to hold water.

Let's just go with it's an adorable shot of two adorable babies sixteen years ago.

Again

So this is happening.  Again.

Last year was the year of the vapour barrier.  Three bedrooms worth of drywall coming down, trouble spots treated, vapour barrier installed, drywall up, mudding, sanding, painting, baseboards, clean up etc etc.  Don't I sound knowledgeable?  I know right?  I should have some grasp of the process being that we have been through it enough times.  Gratefully it is not me doing the work!  My efforts are better spent crabbing about it all being that a person should stick with what they know....

Our problem is that the house has about three different ages.  The front part of the house is I believe over fifty years old.  Turns out houses have a best before date and we have reached it at the front.  Moisture is getting in and growing mold in corners.  Rumour has it that mold is bad for a person plus black is not a good colour on walls.  The back part of the house is eleven years old.  We had renos done organized by a charitable organization and completed by local builders.  They gratefully added on nine hundred square feet all of which is wheelchair accessible.  Not a day goes by that I am not appreciative of the generosity of strangers.  We are a lucky lucky family.

The basement has been done a couple of times with water issues, development, renovations of the early development. You get the picture.

This will be done quickly, efficiently and properly so my whining will be short lived.  At least in regards to this issue.  My talent is that I can always find something to whine about.  It's a gift really.

1993

This was us the I think the spring of 1993.  There was just the four darlings and me.  I find it hilarious if not ridiculous that I was fighting the "too many kids" stigma back then too.

This picture would have been four years before the teens were born.  One laughed when shown the picture, the other was "oh my Gawd Mum!  You look soooo much better now!  You look waaay younger than you did then!"

In my head I bought her a car.

It will soon be high school graduation for the teens.  You know what that means right?
Grad dress shopping!
One has a dress and the other and I have been internet shopping to get a feel for styles before we venture out in the next couple of weeks.
I think my eyes are on fire.  Very few of the sites list the cost of the dresses.  Experience tells me that is not a good thing....
The search continues

Happy Birthday Mum

 Happy what would have been your 76th Birthday Mum!  First one in Heaven.

 Facebook would refer to our relationship as "complicated" for a good lot of my life but I loved you.

 Just as you were beginning to try and take bolder steps in your senior years you were denied the time to do so.
I wonder if there are iPads in Heaven and if you figured out how to iMessage.  If you have shoot me one every now and again or is that you dropping quarters places around my house?

Your little dog is fine.  Bill still gets him his Wendy's hamburger when he's out.  Damn dog and his need to run down the alley leaving you to slip on the ice.  I blame the little bugger you know....

Together again.  It was only for you that as soon as you spoke she immediately cooed and laughed.  Only for you.

Give her kisses from me.

                                                     Could you have been more cute?

Happy Birthday Mum January 3, 1939 - April 9, 2014

Christmas Eve letter to Santa

Letter to Santa.  First Donovan tried his hand at some printing but the stress became too much for him so Malia took over.  I will admit that I offered my two cents into what the letter might contain.

Of course there were the obligatory cookies, a choice between M&M cookies of shortbread.  It appears Santa had a hankering for shortbread.  The reindeer only nibbled on the carrots.  The chocolate milk seemed to go down smoothly.

Of course Santa always takes the time to write back.  Sorry if he was late getting to any of your houses.

 The letter back was a little worse for wear by the time I thought I should take a picture.  It's a little hard to read.  It appears Santa was afraid he was running out of room and started writing smaller and smaller.  I suppose the late hour or very early morning such as it might have been when he was here might have played a role.

My kids were happy.  I hope all of yours were too.