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?

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

T21 Traveling Afghan!

THE AFGHAN HAS STARTED IT'S JOURNEY!

Follow It's Progress here with the
T21 Traveling Afghan Google Earth Map

So Far;
It left Appleton, WI and the home of Little Miss E on Feb 28th

Here is Little Miss E with the Afghan before it left on its adventure!



It arrived in Ely, Iowa and the Home of the Fledge Family on March 2nd.

Little Miss Mayson looks just so excited to spend time snuggling with the Afghan!


I am very excited about this project and the journey of the Traveling Afghan. For those of you who don't already know, there is a facebook group that you can join as well, if you want to follow the progress. We were the only Canadian family on the roster for a while, but I have spread the word and managed to convince a facebook friend to sign up. Brandi and her son Braedyn are now on the list as the second Canuck family!!! YAY!

I would like to take a few photos with the DS group when it gets to us. Seeing as the DS group is every second Friday, I am crossing my fingers that the timing will work out as I don't want to hold up the adventure! It would be awesome to take a few pics with all the little ones and new babies at the Alberta Children's Hospital DS group! Everyone laying on the Afghan smiling up at the camera!

Keep coming back for updates!!!

A New Generation

This makes me want to scream!

I stopped in to read Adrienne's Blog, Our Unexpected Journey. Adrienne is a strong, beautiful lady who is expecting Bennett in roughly 93 days (Roughly! Lol). He has DS and she was pre-natally diagnosed. (Obviously, if she hasn't delivered him yet it's certainly not POST natal) Anyway, she linked to an article that she found on another blog and I'm gonna rant for a minute.
Adrienne is a far stronger and wiser woman that I am. She doesn't judge people for the choices that they make in life. I frankly think that anyone who decides to terminate a pregnancy because of a prenatal diagnosis of Down Syndrome is a coward, a fool, and has their heads up their asses. Now, I'm sorry if that offends you, but honestly! Are you choosing to terminate that baby because it's not perfect!? Because he or she might not finish High school? Because your perfect baby that you have been dreaming of might not ever get married, or be able to have babies? Maybe you are embarrassed of how your child might look or you don't know if you can handle all the physical health issues that are associated with Down syndrome.

I shake my head in disgust.

I never graduated high school. My marriage failed! I was a typical baby.
Any child you have can be born with health issues, a cleft pallet, diabetes, heart disease, infertility, or copious other health concerns. Maybe there is nothing wrong with your perfect little child until he turns 3 and you realise he has autism. Or Your son becomes a drug addict, a child molester, a rapist, a wife beater or a million other awful things. AHHHHHHhhh There is no way to predict what your child will be like. There would be no one having children if we only gave birth to the "perfect" babies. EUGENICS! HOLOCAUST! To terminate based on a prenatal diagnoses of DS is the stupidest thing I can think of. In fact, you have a better idea of what your child's future WILL hold, knowing that he/she has DS. Some of you may think I'm bitter so I'm ranting. On the contrary. I couldn't be happier. I love my son. Every single PERFECT little inch of him. What makes me angry is that there are people who don't want to give these children a chance. To think if I had decided to get the Amnio and terminate. What a shame! That beautiful, sweet, amazing, innocent, brilliant child would never have had the opportunity to see this world. To see the sun! To smile or laugh with his Daddy! Ugh! I'm bawling again. Such a shame that there are people who see children with disabilities as burdens on our society, on our healthcare system. I'm ashamed. The best part of having a child with DS is how that child changes you. I have seen so many families online who had a biological child with DS and have decided to adopt another child with DS. That just shows you how wonderful these children are. They change people lives!

I love you Hunter James Ross! I wouldn't change you for the world! You are Perfect!

Speaking of Adoption

I am Linking to Bethany's Blog today to help her help some friends.

Bethany is one of the most amazing women. She is a full time mommy to three lil ones, a full time blogger and a full time friend. She adopted one of her daughters, Addison aka Nika, from Russia. Nika has Down Syndrome and Bethany has become quite the advocate and friend to families who are also in the process of adopting from overseas. But if you have ever looked into Overseas adoptions you may know that financially, it's a huge expense.
These wonderful children are well worth every penny that it costs to have them adopted into a loving and happy home, but 30,000$ can be difficult to come up with.

In less than one week, two more kids in Eastern Europe will be one step closer to being rescued by their forever families. Bethany has posted links to help these families financially as there are still some expenses. If your family can spare a little to help these children find their way home what a huge impact it will make.


This is Timur and you can see his family blog Here

And this is little Reece and you can see her family Blog Here.


Not everyone can afford to adopt, Let ALONE, adopt from overseas. I certainly would not be in any position financially to adopt at this time but I can certainly make a small donation and I know how much it will help. These families are so full of love and can't wait to bring these children into their lives at any cost, even in such times of economic crisis.


You can also Donate directly through these links at Reece's Rainbow which I have mentioned before.

Here is the Link to Donate to Timur's Home coming.
Here is the link to Donate to Reece's Home coming.

YAY! I'm just so happy to know that two more babies will have real homes, families and futures! I can't take on such a mission but I can certainly help them with theirs!

Please help!
<3 Ssejors

21 Things About Down Syndrome

I love my 21 Things posts so today I am Posting a 21 things about Down Syndrome post for those of you who just aren't sure. Feel free to ask me any questions. I will be happy to answer them.



1) Down Syndrome is referred to Trisomy 21 because it is a chromosomal disorder or anomaly caused by the presence of a third(tri) chromosome(somy) on the 21st pair of chromosomes. Rather than having 46 Chromosome, or 13 pairs, there is one extra 21st chromosome. 47 Chromosomes!

2) The incidence of Down syndrome is estimated at 1 per 800 to 1,000 births.

3) Down syndrome occurs in all Races, Classes, Sexes, and economic levels. Therefore, down syndrome can occur all over the world.

4) The additional copy of the 21st chromosome which causes Down syndrome can originate from either the father or the mother although, approximately five percent of the cases have been traced to the father.

5) There is absolutely nothing you can do to Cause or Prevent Down Syndrome from occurring. Down syndrome is not caused by maternal abuse (drugs, alcohol, smoking, etc)

6) Most children with Down syndrome are born to women younger than 35-years-old simply because younger women have more children. However, the incidence of births of children with Down syndrome slightly increases with the age of the mother.

7) Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability and are NOT usually severely disabled.

8) Babies with Down Syndrome often have Hypotonia or Low Muscle Tone. This means they are often "floppy" so it can take them a little longer to learn to do things like walk, crawl, sit up or other Gross Motor Skills.

9) At birth, kids with DS are usually of average size, but they tend to grow at a slower rate and remain smaller than their peers. (That's why the Bean is a shorty)

10) Almost half of all children born with DS will have a congenital heart defect that will require surgery.

11) English physician John Langdon Down first characterized Down syndrome as a distinct form of mental disability in 1862, and in a more widely published report in 1866. Due to his perception that children with Down syndrome shared physical facial similarities (epicanthal folds) with those of Blumenbach's Mongolian race, Down used the term mongoloid.

12) Health concerns for individuals with Down syndrome include a higher risk for congenital heart defects, gastroesophageal reflux disease, recurrent ear infections, obstructive sleep apnea, and thyroid dysfunctions.

13) There are 3 types of Down Syndrome. Trisomy 21, Mosaicism, and Robertson Translocation.

14) Studies have shown that over 90% of pregnancies positively diagnosed with Down Syndrome prenatally will be terminated.

15) Health factors can contribute to a shorter life expectancy for people with Down syndrome. The average life span for someone with Down Syndrome is around 60. This is dramatically improved since 1980 when the average life expectancy of a person with DS was only 25.

16) Fertility amongst both males and females is reduced; males are usually unable to father children, while females demonstrate significantly lower rates of conception relative to unaffected individuals. Approximately half of the offspring of someone with Down syndrome also have the syndrome themselves. There have been only three recorded instances of males with Down syndrome fathering children.

17) Children with Down syndrome always resemble their parents. They are not freaks or misshapen or deformed. My son looks exactly like his Daddy and it's quite striking.

18) Until the middle of the 20th century, the cause of Down syndrome remained unknown. With the discovery of karyotype techniques in the 1950s, it became possible to identify abnormalities of chromosomal number or shape. In 1959, Jérôme Lejeune discovered that Down syndrome resulted from an extra chromosome.

19) Compared to the general population, individuals with Down syndrome have a 12-fold higher mortality rate from infectious diseases, if these infections are left untreated and unmonitored. These infections are due to abnormalities in their immune systems, usually the t-cell and antibody-mediated immunity functions that fight off infections. Children with Down syndrome are also more likely to develop chronic respiratory infections, middle ear infections, and recurrent tonsillitis. In addition, there is a 62-fold higher incidence of pneumonia in children with Down syndrome than in the general population.

20) Children overseas in Hague countries who are orphaned have till the age of 4 to be adopted before they are institutionalized. This is because this children are looked at as unwanted and as a burden. There is a strong push in North America right now to adopt children with DS internationally.

21) I would never change my son for anything. He is absolutely perfect and he has Down Syndrome for a reason. He is here to teach our family and the people around us about life, Down Syndrome, children, love, and compassion.



Here are some links to Great web sites that will give you more information about Down Syndrome and Overseas Adoption.


ADOPTIONS

~ Reece's Rainbow - International Down Syndrome Orphan Ministry
~ Member's Project - A link to support Reece's Rainbow Member's Project through American Express for financial aid. The project was #24 in number of votes when the American Express Members Project Top 25 were chosen, out of 2,086.

~ Rainbow Kids - International and Special needs Adoptions, linking families, agencies and children.

~ Adoption Council of Canada - The Adoption Council of Canada (ACC) is the umbrella organization for adoption in Canada.



DOWN SYNDROME

Down Syndrome -Wikipedia

Canadian Down Syndrome Society - Some of the folks I know through CDSS

National Down syndrome Society - In the US

Ups and Downs - Fabulous Calgary Organization

T21 Traveling Afghan!

What An Amazing Idea!

Little Miss E and Her Momma are making an Afghan and they are going to be sending it around the globe to fellow bloggers and families with loved ones who have T21 (Trisomy 21)
We have signed up and look forward to the day when the T21 Afghan reaches the colds of Canada! Then we get to take a pic of the Beany Baby with the Afghan and write in the journal and send it off to the next family! This is just such a wonderful idea to bring families with down syndrome that much closer together! I'm just so excited!
Thanks for the great idea and we look forward to seeing the Afghan!

Leah

I can't get the idea of adopting a little girl out of my head.

Now I know what my mother will say about all this and she can chide me if she wants. I know I am gonna hear about it but the idea keeps coming back to me. I can't seem to stop it. It's not the first time in my life that I have entertained the thought either. In another life (read; back when I was with someone else, many moons ago), the idea of adopting was discussed openly. A few very close friends I know and love were adopted as babies, some even were adopted from the Ukraine. So it's not an entirely foreign concept. I know I am no where near a perfect mother, and I am still learning patience and tolerance, understanding, selflessness, compassion, and I don't know if I will ever be able to keep my house clean as some, but there is so much room in my heart and soul to welcome more children into my life. Does this make any sense? For some it's probably completely insane. For others, it's probably as normal as breathing. So in the past month, while the idea has been spinning and weaving it's little self into my brain, I have had some time to look into adoption.

One little girl's picture keeps me coming back everyday. Lil Leah. Born April 17th, 2008. Fifteen days after the Bean joined our family. She is from Eastern Europe and just like the Bean, she has Down Syndrome.


She's so pretty and I keep thinking about her. I wonder what she is doing and where she is sleeping and if she gets nice sweet kisses everyday. If she is learning to crawl or eat solids? Is anyone reading her books or giving her nice warm bubble baths? I wonder how happy she is. This picture makes me hope that she is doing well. She's in a beautiful pink shirt all cozy in her bed. Someone cares enough to put her in the pretty pink shirt. I just wish I was able to hold her and make her safe. At 10 months now she needs a lot of play, and toys, songs, books, laughter and love so that she can develop and grow to her fullest potential. Uhg! I just wanna scoop her up and give her the chance to grow with the Bean. The two of them together. Their laughter and foot steps filling my house. Now I'm crying.

I remember as a child, when I was about 9 or so, just after my brother Andrew was born, I found a missing children flier some where. I remember hiding in my bed room crying, looking at all the babies and little kids that were missing, scared and alone without their parents. My dad heard me and came to see why I was crying and I told him I was sad that these poor babies were alone and that I wanted to help them, they could sleep in my room and share my things.

Now that I am an adult, a woman, a mother, I have the wherewithal to actually do something to help even just ONE child. To give the safety and love and support to just one child who can't help themselves.

So, this is something that has been on my mind a lot lately. Please don't think that I don't love or like my family. That's the furthest thing from the truth. In fact, I love them dearly and know how wonderfully accepting and loving they are! What fabulous love and attention they would shower on a little baby girl. They are amazingly supportive.

Maybe one day. For now I will just hope that Lil Leah is doing well and being treated with love and care.

I wish she knew that there was someone thinking about her. Hoping for nothing but the best for her. Loving her precious little eyes.

What a sap!

Sigur Ros Video

I Found A New Blog!

As I surf the Blog world, bouncing from link to link, catching up with all the Momma Bloggers, I discovered Adrienne!

Adrienne has a beautiful blog, wonderfully adorned with Bethany's artwork as seems to be the fashion. She is expecting her third child! Her First boy, Bennett. Bennett has been prenatally diagnosed with Trisomy 21 and I look forward to following their family's journey and of course seeing pics of baby Bennett.

Down Syndrome Creed

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

NewBean!

Who Told You I Was Charming! >.<

I love Bananas!

I can't leave them alone!

I'm Crazy Bout Bananas, Cause Bananas ain't got no bones!

Ha Ha!

Patrushka's Bunny doubles as a pillow I see!

All Right Which One Of You Jerks Put Me In Here?

Not Funny!

That's It! I'm Calling NANA and Telling on You!

Nice Hair Baby Boy!

Bean Sprout!

Just a few Pics to show you how fast the Bean is Sprouting!



This first pic is one of the very first pics ever taken of my lil Bean! Daddy took it on his Cellphone and we sent it to Nana and Granddad right away. Here is a picture from a few hours after he was born. I still have the IV's in my arm so it's still the 2nd of April. His BIRTHday! This picture makes me want to cry. What an overwhelming day.

This is a bunny made by one of my momma's quilting friends named Patrushka. This bunny is wonderful. He is so soft and made of a sort of terry towel. Also, he doesn't have any eyes so I will never have to worry about sewing any back on. We use the bunny to show how big Beany is getting!

This picture is from May 12 or so, 2008.

Here is another picture with Patrushka's Bunny! This one was taken in July, 2008.

And Here! The Bean Sprout in January, 2009!

On the lighter side... 21 Things!

After my total and complete rant about the Lil Truck Of Horrors, I have decide to lighten things up!

21 Things about the Bean!

1) He laughs when you say "Roar!" or "Boo!".

2) He loves Pickles.

3) He can't seem to swallow Potatoes but he loves French Fries.

4) He was 4 lbs, 14 ounces when he was born.

5) He was Born April 2nd, 2008.

6) He was supposed to be born April 25th, 2008.

7) I was induced with him on April 1st, 2008 but he just wouldn't come out that day.

8) He loves to stand and stomp his feet.

9) He has one tooth so far.

10) He has really strong muscle tone and likes heavy work and heavy touch.

11) He is finally starting to notice the Signs that we use with him, Like Momma, Daddy, Hi, Eat, Drink, All done, Duck.

12) He really likes Ice cream, Whipped cream, Yogurt or any other creamy whipped sweetened goodness!

13) He has sleep apnea.

14) He Hates falling asleep and Hates to be woken up before he is ready.

15) He hasn't pulled himself to a stand yet :(

16) He first went camping when he was 6 weeks and started swimming when he was about 8 weeks!

17) He has a collection of turtles in his room from all over the place! D once asked me if I chose Turtles for Hunter Bean because he has DS and turtles are slow but I had picked turtles for Hunter Bean before I gave birth to him and we had no idea that he had DS before he was born.

18) He has been to Vancouver,BC; A road trip to Saskatchewan and lots of places in Alberta!

19) He absolutely loves water, baths and swimming in the pool with his Momma!

20) He hates having his butt changed!

21) He rocks back and forth when someone is singing or there is music that he likes. He will also do this when he is really excited or happy about something, like when Daddy comes home and gives him a big smile.

I See Bean See!

My Post Titles are So silly!


BEANY!

We went to the Alberta Children's Hospital today to have Hunter Bean's eyes checked. He followed the lady and her fancy pen light, showed her his pretty blue, albeit, crossed eyes, and I'm sure made her day with his charming smile. We were lucky too. D said he would meet us there at 2:45 after our appointment but he showed up early and spied us having a hot dog in the cafeteria. We were excited to see him. Seeing Daddy is always exciting and watching Beany's face light up when he sees D is so great! Not only did we get extra time with Daddy but our appointment that was supposed to be an hour long turned out to only take 15 mins and we were able to go to the mall and have a coffee with him before I had to rush off to work, so that was a nice surprise. We have a follow up appointment on Feb 6th to see the actual Ophthalmologist. Today was just an assessment to see how soon he needed to see the Doctor I suppose.

We are very fortunate to have such a beautiful hospital to take him to. His eye doctor, the Down Syndrome Clinic, the RSV Clinic and the baby massage classes are all at the ACH (Alberta Children's Hospital) and it's an absolutely beautiful hospital. It's a very warm, colorful and enjoyable place to take your children and I always look forward to our appointments there even though it is 2 hour / 3 bus ride for us from home.


Every other Friday we have a drop in at the Down Syndrome Clinic where Hunter Bean gets to see his Dietitian, Occupational Therapist, Growth and Development Specialists, Speech Pathologists, etc, etc, etc. I'm always so proud to take him and the ladies there just adore him.

Ha, We were looking at his lil tooth today and it's the furthest thing from straight! Which is just terrific because I went through the whole braces, bionator, head gear, retainer thing and wow how it sucked. So I reallllllly reallllllly hope that his teeth are nice and straight and not like mommy or daddy's! Arg! Ce la Vie! It is what it is.

Regardless of glasses or braces, he will be a handsome boy. His brother Samuel is a good looking kid and will be a real ladies man when he gets to be a teenager. I'm sure we will have all kinds of girls calling the house for Sam. :D If only he would listen to us when we tell him that girls don't have cooties, that they are actually pretty cool.

We are slowly teaching him how to cook so that he will be able to impress all his GF's to come. So far he has mastered Oven baked Pizza (Delicio), Itchiban (Ramon noodles), Canned soups, Nachos baked with cheese in the oven, and he manages the Microwave quite well. AND BOY OH BOY can he and his Dad make a KICK ASS Banana Bread! I'm very proud of how Sam's cooking skills have come along since he moved in with us. He was not really interested in learning to cook and was nervous even opening the oven, but now he shows signs of confidence. He makes his own lunches, whips up bowls of oatmeal in the morning for breaky, has made macaroni a few times for himself. WOOT! He'll have bachelor food mastered by his 12th birthday and we will be able to start teaching him the finer things like the BBQ this summer! Wont that be great, D and S out on the deck, Bean crawling around in the grass, steaks on the BBQ, corn on the cob, potatoe salad and a beautiful summer evening! I'm looking forward to it already.

Canada needs a Prenatal Diagnosed Condition Awareness Act

Please Check out and perhaps sign this Petition.

"Technological advances in fetal screening are presenting parents -and doctors- with enormous ethical, psychological and social dilemmas. Vulnerable, and with limited or biased information as guidance, more than 90% of prospective parents in Canada choose termination if their baby is diagnosed prenatal with Down syndrome. They may never know there is a world of resources, hope and support out there. In spite of tireless efforts from support groups their information pamphlets rarely reach prospective parents at the time they need it most."

They may never know that the most loving and wonderful community exists. I have never felt such amazing support and understanding from any group of people in my life as I have from those who are involved in the Down Syndrome Community. From parents of children with DS to support workers, Doctors, Therapists, Mothers, Grandmothers, Friends of people who have children with DS, BLOGGERS! What a welcoming and wonderful world it is to be a part of. The fear of raising a child with Down Syndrome completely washes away and is replaced by a feeling of being embraced by everyone who is a few steps ahead of you on the same journey.

I want to thank each and everyone of you in this community for changing the face of Down Syndrome. For offering a hand to those of us who needed it. I hope that I, in turn, can offer my hand, can help someone up, encourage them on their way, and show them how exciting this journey will be!

Chomping bean!

Lil Baby Bitee Bean!



THE BEAN HAS A TOOTH!!!



It was coming through while Nana was here and that was when we first discovered it pushing through his lil gums, but it has finally arrived.



I would love to preserve this moment by taking a picture of the tiny lil beast peeking its sharp lil head out, but alas and alack, it is such a tiny lil tooth and good luck getting the Teeny Beany to sit through a picture of the inside of his mouth!





Another update of the Bean.



This Tuesday we have an Eye Appointment and the Alberta Children's Hospital. We have been waiting a few months to get him in to see (ha ha) the Eye Doc. He has a tendency to be a lil cross eyed at times and it seems that his left eye tends to be a lil more crossed than the right. I'm hoping that the Eye Doc can help us out with this. I know that if he needs lil tiny glasses he will be THE most awesomely cute child ever! I think that would just be fantastic. I don't WANT him to have glasses. I would rather his eye sight be prefect, but if he needs glasses I wont complain.



Then we have an over night sleep study at the Children's in March. We get to spend the night in the hospital, Bean with hoses and machines hooked all up to him, recording his oxygen levels. I'm not really looking forward to sleeping in the hospital but it's for the best. This way we will get a better idea as to Beanies needs and how best to cope with his sleep apnea.

The sleep apnea is becoming a bit of a pain for him I think. Poor lil guy has been waking up alot lately. I think part of that had to do with the tooth coming through and a slight cold that he had which was making him all stuffed up and runny nosed. The cold has cleared and the tooth has surfaced and he is not waking up every two hours any more but I can tell he is still having issues with the apnea. I wish I could make it better. It's so nerve racking to know you lil boy stops breathing in the middle of the night.

Hopefully we will get him to cooperate with the CPAP machine here soon and he can start wearing it at night. That would make me alot happier.

I will update soon about the eye Doc appointment.

Lil Beany Boy

I'm Not Small

I'm SO Tall!

I could carry an Ice Cream Truck on My Back!

OHHH Bath Time!

LOOK MOMMA! I'M A FROGZORS!

Uh? Are We Done With The Pics Yet Nan!?

I only Ride in Style!

Uh? What's up?

OH HEY!! NANA!!!

I'ma Getchoo!

I GOTCHOO NANA!!