Castian and The T21 Travelling Afghan!

I had the Afghan for FAR too long but there were a few delays in getting together with the next family.

We decided, rather than mail the Afghan across the city, why not just get together for a play date and do a personal hand off and make some new friends!

Here is Castian and his Momma Arlene receiving the T21 Travelling Afghan!

YAY!! OUT COMES THE BOX!

And my kids are in there like it's Christmas!

Castian Eyeballing Hunter!

"Back away from the box Bud!

You had your turn!"

Here Castian is checking out the Journal and deciding if the New Journal is Acceptable!

He has deemed it so!

Hunter Chatting away to Castian While he works on his Commando Crawl!

CPAP progress!

This is a crummy picture because I took it with my phone but here is my boy, passed out dead to the world, having the best nap ever after calmly and patiently allowing me and the respiratory therapists to put his CPAP mask on him. We turned it on to see how he would do with the air. And just like that, one minute I'm holding him in my arms rocking him and the next... he just laid in my arms, relaxed and fell asleep. Right there in the living room in front of the three ladies (1 Resp, therapist, and 2 RN's) Zonked right out! We put him in the play pen and let him sleep for 2 hours. Daddy put him to bed with the machine and the mask on tonight and I haven't had a status update as of yet but I'm hoping it's still on when I get home! Sweet little guy, he needs all the rest and relaxation he can get, and oxygen WHILE he's doing it! I loves him!

Day 21 of 31 for 21

Well, Finding time to blog is not as easy as I thought it would be!

I did find a few things I wanna share with the world!


NEW BLOG FUN THE SPARKLING MARTINS
Not a DS blog but an Unschooling blog. Even if you aren't into Unschooling or home schooling, it's still a great blog for creative ideas and great family fun! Thank you to My friend Mary for Sharing!

And here is a video for everyone to show that I love you !

Day 15 of 31 for 21

Grab This Button

Im so exhausted and out of sorts tonight and not really in the mood to blog. But I can upload a few pictures for you!

My Man and his Mini Mohawk!

Day 14 of 31 for 21- Monica and David - Paving the Way for Our Children!

Grab This Button

Tonight is the World Television Debut of the Tribeca Film Festival Best Documentary Feature

Monica and David

Currently, this is not set to air in Canada yet but there is word that CBC will be airing the documentary all though it is not confirmed as of yet!

Please keep me posted if you hear otherwise!

I am just DYING to see this movie!

Monica looks like such a sweet heart!

Little Drummer Boy

Day 13 of 31 For 21

Grab This Button

Ok So I'm kind of cheating in that I didn't start the 31 for 21 on the first of October, but I am going to try to finish the month at least.

Quickly, I will note that I have added a Reece's Rainbow Slide show button on the right to show my support of an absolutely wonderful cause.

I'm only just back in the blogosphere and I have a lot I would like to write about but I'm a little stressed, tired, and frankly, spread too thin to even think lately. Going back to work has certainly helped but I need to get back to a good solid routine.

Last night I didn't manage to get INTO bed until 1 am and then Phoenix was up at 4 looking for a snuggle and wanting to be tucked back in to bed. Hunter then woke up at about 5:20 and while I was trying to put him back to sleep Phoenix woke up again, which, pretty much woke Hunter up for good. I tried to snuggle them both back to sleep in Hunter's bed but neither one of them wanted to go back to sleep I guess. I was looking forward to Coleen's visit today so that I might be able to put Phee down for a nap and then have a snooze my self for an hour while Hunter played. That didn't work out quite as I had planned. Phoenix was getting pretty cranky around 8:30 am, so I put her back to bed and went to lay down on the couch and hang out with Hunter while we waited for Coleen. Hunt climbed up into his play pen that we have out in the living room at the moment and played quietly. I closed my eyes on the couch. I woke up at 9:15 and realised that Coleen was supposed to be over. I gave her a call to see if she was running late. She wasn't. She had been to the house, rang the door bell three times and had even called the house from the front step. And I slept right through it all. I can't tell you how upset I was when I realise that I had slept through her knocking and calling. I caused poor little Hunty to miss his play date. I just cried and cried. I felt so terrible, but I must have been absolutely exhausted if I didn't hear Coleen at all. How tired does a person have to be, to sleep through the door bell when the front door is less than 10 feet from where they are sleeping?

I spent 2 hours with Hunter myself this morning. Colouring, helping him with his glasses, playing with his guitar and drums.

I'm still mad at myself. And on top of all that Coleen has a doctor's appointment tomorrow, so he will miss her visit then as well. :(

Nana suggests I leave the door unlocked for Coleen I might have to do that.

Bad Mommy!

Addressing Challenging Behaviours in Children With Down Syndrome

Looks like we need to start talking about our children and their Challenging (to say the least) Behaviours. As a parent, and a blogger, I think it would be good for us as a community AS A WHOLE to talk about our children's behavior. If anything it will only help us understand our kids, and I know it will personally comfort me and other parents to know that I am NOT the only one dealing with an exceptionally difficult child.

To start things off, I will share an article that my father found online for me one day when I called looking for my MOMMY, but she wasn't home. It was a good thing he answered because some days, it's better to talk to a less emotional , more Logic and Reasoning, kinda person. Not that my mother ISN'T logical and reasonable, but I AM NOT logical and reasonable when talking to her. Regardless, here is a link to the article. Addressing challenging behaviour in children with Down syndrome: The use of applied behaviour analysis for assessment and intervention

It is a very in depth paper and not something that is easily perused.

As I mentioned in an earlier post this week, I have a girl who comes to the house to work with Hunter 5 days a week now. She plays with him for 2 hours a day and is there specifically to help me work with Hunter on certain Challenging Behaviours.


First I will give you a run down on some (certainly not ALL, because I would be here all night) of the behaviours that Hunter is doing regularly.

~When Hunter is not given what he wants he will get angry and throw himself on the floor and smash his upper body backwards so as to smash his head on the floor. (Clearly he figured out that when he is hurt mommy and daddy come running)

~Hunter yells constantly and when asked to be quiet he will not listen. He shouts everywhere we go. On the bus, in the stores, EVERYWHERE. The bus driver the other day mentioned to me how he was being pretty quiet today.... I didn't think so. But I guess, comparatively he really WAS being quieter.

~He can not be left alone for any real length of time with his sister. He impulsively smashes her on the head, drags her around by her legs(which she actually thinks is quite hilarious), pushes her over or tries to undress her and remove her diaper.

~Hunter will RARELY take no for an answer and due to his lack of understanding and reasoning, giving him an answer is most often pointless.

~Hunt will not leave any clothes ON. He will not wear pants, shirts, diapers, pull ups, or anything on his body for any length of time unless it has been Hunter proofed, Read - Duct taped. 90% of the time he spends in zip up one piece sleepers that are either on backwards or taped across the zipper to keep him from taking off his clothes. If I DIDN'T tape his clothes on, I would spend my whole day cleaning my carpet and chasing him to put his clothes back on.

~Hunter has little to NO attention span and just runs from one toy to the next at an alarming speed. This is extremely challenging in that he is VERY difficult to contain for more than 3 - 5 mins or so. Anything beyond that and he will get very frustrated and angry. Sitting still for more than one or two pages in a book is completely unheard of in my house. Because of his lack of attention span, Hunter will not cooperate with a lot of tasks that are asked of him, like sitting still to have his shoes put on or waiting for his food.

~Hunt does not look or THINK about where he is going. In 2 and a half years, my son has had at least 4 black eyes, mostly because he just RUNS full bore into things. I can't seem to get him to slow down at all. I ask him to go slow and LOOK before he does things but he is constantly injuring himself by being careless.

~Hunter obsesses about certain things and he can't seem to be diverted from these obsessions very easily. For example, the diapers. The moment we put a diaper on him, he reaches for the Velcro tabs and starts pulling at them to take them off. There isn't even a SECOND where he will just wander around with clothes or a diaper on when he WONT instantly start taking them off. Even when his clothes ARE duct taped on, he will spend half the night trying to get them off. The telephone is another object that he obsesses about. No matter how many times I tell him NO you can't have the phone, he still points at it and asks over and over and over again in his own little Hunter way. "Neeh! Neeh! Neeeeeh!" Point Point Point, Signs please over and over and over again. Point point point "Neeh! Neeh! Neeh!" (We aren't sure what "neeh" means but I think it might be him trying to say please.

~The tap in the bath is yet another obsession and he WILL NOT FOR THE LOVE OF ALL THINGS HOLY LEAVE IT ALONE!

~Glasses are of course a challenge but that seems to be coming along with the help of Coleen.

~Hunter will not remain seated in any sort of Stroller, High Chair, Car seat, Shopping cart, ride on toy, or any other SEAT unless he is completely strapped in with a proper seat belt or harness that he can NOT undo. He is very good with buckles, zippers, belts and clips. I have booster seats that have little trays on them which I use all the time with Phoenix but I CAN NOT use them with Hunter because he will not stay in his seat. He just wants to climb out. I still use his old baby high chair with the five point harness to ensure his safety when he is eating.

~As I mentioned, Hunt is very busy and very curious, but do to the fact that he does not listen, cooperate, pay attention to where he is going or even have any sense of fear or danger (except loud noises like trains, that scares him), I can not let him have free run of the house. This causes exceptional behaviour issues with Hunter because he is pretty much forced to spend most of his time in our living room, which we have set up specifically for him. We have to maintain the baby gates at the bottom of the stairs and between the living room and the kitchen. This is strictly for his own safety at this point.

~Additionally, because he has ZERO attention span, he is VERY hard to entertain. He also does not play with things the same way other kids would. If I give him washable felt markers, he just wants to take the lids off then put them back on. On and off, on and off.... all day. If you give him a Tupperware bowl and a lid... he is in heaven. I struggle to find things to keep him busy, such as little projects, drawings, puzzles, books and such. He has no patience for any of that.

~Lastly, If MOM has asked me to do it... I'M NOT GONNA! If dad says NO, then it means NO. If Mom says no.. it means do it harder, faster and more furiously till she gets to me! ( I KNOW... That's totally Typical Two year old boy)


These are some of the things I contend with everyday while trying my hardest to not lose my SHIT!

I know that some of them are totally normal, while others are just so beyond annoying and not typical of a 2 and a half year old.


Ironically.. a friend of mine said she wished that some days her daughter could just be a "stereotypical child with Down syndrome," .. all smiles and cherubic. Frankly, I think this is TYPICAL of all kids with Down Syndrome, and anyone I have ever talked to who has raised a child with Down syndrome would probably agree. Stubborn, hard headed, determined and FIXATED! If only we as parents can work together to help each other out!


So this is where I ask YOU for your input. What kind of challenging behaviors do you deal with and how do you cope? How do you try to change them?

Phunny Phee

Random Phee pics!

Bragging Rights!

Ok.. So i knit this little beauty last year for my parents as a Christmas gift and I haven't posted about it yet so I thought I would share. It is my best work so far, so it's only fair that I show it off.

I was knitting it right up until Christmas Eve. I was actually FINISHING it in my mothers living room while she watched but I told her I was making Dave a sweater. She couldn't figure out why I was knitting so madly on Christmas Eve. Phoenix was only 6 weeks old and any spare minute I had where she wasn't on the boob or in my arms I made Dave take her so I could keep knitting. It was down to the wire and I finally finished it right as we were finally ready for bed. Thankfully.

The Afghan Officially Arrived!

Yesterday the postal lady pulled up in front of my house and got out of her van with a parcel under her arm. Coleen was over visiting with Hunter and as soon as I saw her walking towards my house I jumped up and ran to the door, accosting her, asking if that parcel was for me. She said that no, in fact, it was for # 52 and NOT #56. The neighbours are always getting parcels!

I told her I was expecting something important and went back to my lonely corner of the living room.

Two mins later she was walking back towards my house with yet ANOTHER parcel, only this time she walked up MY sidewalk!

I WANT MY BLANKIE!

I am patiently awaiting the arrival of the Afghan!

and if by patiently I mean... Checking out the window every few minutes hoping to see a delivery man and checking the mail box for a parcel key twice daily AND checking the front step and door knob for Canada post, THEN YES, i am Patiently waiting! :D

Brilliant Beginnings and why Coleen is my Saving Grace!

A few months ago I decided to get a contract going with FSCD, which is Family Support for Children with Disabilities. Originally I got the contract to help cover the cost of any trips to and from the Children's Hospital for Hunter's appointments. They will help financially with the cost of transportation to and from appointments as well as pay for any parking while at the hospital or doctor's office. We don't have many appointments for Hunt but every little bit helps when it comes to finances. The FSCD will also help cover other costs that a family might incur when caring for a child with a disability. I had a lady come out to the house and give me the full run down on all the different things that they can fund. One of the things they will cover is a program called the Triple P Program which is a parenting program that helps parents deal with challenging behaviors. They come right out to the house and once a week they will teach us how to address certain issues we are having.

Best of all though, is that the FSCD is funding a program for Hunter called Brilliant Beginnings.

Brilliant Beginnings is a "multi-sensory, Early childhood Development" program for all children, not just those with special needs.

One day when Hunter's Growth and Developmental specialist, Shirley Van Dyk, came over, we got to talking about how it was unfortunate that Hunt was 1 DAY too young to be going in to preschool this September. I was lamenting how I wished he could be in a more focused routine play group setting where he could be learning from people who weren't ME. I'm slowly learning that children tend to listen to their mother's LAST!! Everyone else first.

So Shirley mentioned that a college of hers had started a program called Brilliant Beginnings. It caters to all children but there is a special needs program that she could potentially refer Hunter to and if there were spots left then perhaps FSCD would fund the program for him. Shirley referred us, Melanie and BB got a hold of me and came over to meet Hunter and explained the program to us, she and I contacted FSCD, Susan at FSCD made an addendum to our contract and Hunter got a spot in the BB program!

This is exciting on sooooo many levels. Here is why.

Hunter will get one YEAR of the BB program to start off. The program is 2 hours a day, 5 days a week, one on one play therapy/behavioural therapy, IN MY HOME!

Coleen is the girl who comes over EVERY weekday to play with Hunter from 9 am until 11 am! EVERY WEEKDAY!

Let me reiterate!

Coleen is a young lady who comes to MY house in the morning for 9 am!
She plays with Hunter for 2 hours! Monday - Friday EVERY WEEK FOR A YEAR.

Are you getting the picture..?

Here... I HAVE TWO MORE HOURS IN MY DAY EVERY WEEKDAY NOW!

I HAVE 2 HUNTER FREE HOURS TO CLEAN MY HOUSE, SHOWER, READ MY MAIL, COOK MEALS, DRINK A HOT CUP OF TEA!


I asked Coleen today what my role in the play therapy should be and she said "Honestly, you don't really have to do anything. Most parents go out, go shopping, go for coffee, clean their houses, catch up on work and the like. But you certainly don't have to be here or participate." After she said this I said, "wow ok..I probably wont GO anywhere but that's good to know." I then proceeded to hide in my bathroom and weep quietly. I felt a complete flood of relief wash over me. I gained my composure, went back out into the living room and folded 3 baskets full of laundry while I watched Hunter and Coleen play.

I also had time to clean the cat litter, feed Phoenix, put some laundry away, tidy the kitchen and sit in the sun in the yard for 30 mins.


I am absolutely ELATED that Hunter will now have play time EVERYDAY just for himself, and to know that he will be working on new skills with a qualified behavior therapy team.
This means so much to me. He is going to have so much fun, learn so much, and expel some energy doing it!


Today, Coleen got Hunt to wear his glasses the ENTIRE time she was here. He even wore them for an hour after she left because he forgot they were still on. One small step for Hunter, One GIANT leap for Mom!


Thank you Coleen.
Thank you Shirely.
Thank you Melanie.
Thank you FSCD.
Thank you Brilliant Beginnings.
Thank you Hunter. I love you and I hope you have fun every day with Coleen.

THE AFGHAN IS COMING! THE AFGHAN IS COMING!

In February of 2009, one of the most wonderful and passionate advocates for Down Syndrome that I personally know of, started a project called the T21 Traveling Afghan Project.TY CJ!I instantly signed up knowing how amazing and wonderful this adventure was going to be to follow.I HAVE BEEN WAITING EVER SINCE!!!And today I have been informed that the Afghan is headed my way. En route even!I couldn't be happier. I can't wait to share in such a wonderful, WORLDWIDE Adventure.It feels to me like we are weaving the afghan with our hearts and our stories, with our love and our families. With every new family that receives the Afghan, the afghan gets bigger. With every new child who holds the afghan, it gets stronger. I don't ever want it to stop. Here is a run down of the The T21 Traveling Afghan Project.(I'm sure if you have been following my blog you will probably already know a little bit about it)There is a T21 Afghan is making an amazing adventure!!

The handmade blanket is traveling from one family to another who has a family member with Down Syndrome. The family member can be of any age, from birth through the senior years. The family can also be located anywhere on the globe.

The afghan will travel from one family to another, along with a journal.

Each family, upon receiving the afghan, takes a picture of their family member with it and we post it on on this blog under the Label "T21 Travelling Afghan". After having the afghan for bit, the family writes a note in the journal and sends it off to the next family,who's address I will email to them.
As soon as we get our global gift in the mail I will be sure to take lots of pictures and post of our own adventures with the afghan. I am also hoping to get both of my wee babies an Afghan of their own. I would be more than honoured to have a little piece of the whole enormous project!I also want to thank CJ for all the wonderful work she has done, hand making all the afghans, working so hard to unite the Down Syndrome world and giving everyone a tie that binds.

Hear this prayer
of the
wampum

This is the tie
that will
bind us

Back in the Game!

Soooo... I've come back into the land of ADULTS!!!!

MATERNITY LEAVE IS OFFICIALLY OVER!

Some of you may wonder, "Why on earth would you be excited to go back to work?"

Well... I'll tell you why!

Because by 3pm I am ready to run away from home with nothing but the clothes on my back!

I change one butt after another after another! And LET ME TELL YOU, they might be the cutest little butts on earth but they don't smell like ROSES!
I cook, feed, clean, feed, clean, feed, then sweep, change, sweep followed by MORE Cleaning!
I think I sweep the kitchen floor 4 - 8 times a day, depending on what the babies are EATING.
I chase children, I play with children, I reprimand, and discipline children.
I Laugh and dance with children. I sing ridiculous made up songs to them all day long!
I let them sit on my lap. I share my ice cream with them WHILE they are sitting on my lap, hands and fingers all up IN my ice cream bowl.
I forfeit hot tea for luke warm tea sans cream and sugar, just so I can get a MILD caffeine fix!
I forget to eat because I am too busy running around cleaning and feeding and catering TO the babies...
I love them to the end of the earth and back... but hot dang! I want a hot meal!
I need the private time. The quiet time. The Me time. The adult time. The sanity!

So here I am... Happy to be back at work.

And Now that I'm back to work I will use my time... to blog about my babies! LOL! AND WORK! I WILL ALSO WORK! I PROMISE!

Well CRAP! Time for an overhaul I suppose.

I havent really had time to blog! If you haven't noticed.


~~KIDS~~

Well... I think I will start by redecorating.

Picnic in Cochrane!

Dave and the kids and I went on a nice Saturday picnic and hike yesterday! It was pretty nice out, not too cold at all. We had lunch first then hiked to the top of this little hill in this park in Cochrane. I made a cold shrimp pasta salad, deviled eggs, veggies and dip and rice pudding for the picnic. While we were in Cochrane, Dave took me to a little quilt shop called Addies. They had a pattern for a little girl's Shrug that I had been looking all over the Internet for and luckily for me Addies happened to have it! Now I have a new project! Here is a picture of the Shrug that I intend to make.