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?

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

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.

TINY PIC!

Bear with me here folks. Seems the Designer of my fancy blog template has temporarily moved the border image that was once a fancy perdy red and grey line. Now you see copious images of the word Tiny Pic. I will be fixing the template ASAP. This will be dependant on Hunty Bean and his nap schedule. We shall have the issue resolved shortly! Thanks!

Helping out Household 6

Here is a link to the Household 6 blog. They are currently working on their 3rd adoption from overseas and are in the process of raising some extra funds for the costs associated with adoption. The family is raising money by making handmade, one of a kind colouring bags. I totally love these cute little bags, perfect for colouring books, crayons and all kinds of crafty on the go kinda goods. The bags are available for purchase through HERE. Please check them out. All proceeds will go to help their 3rd Adoption from Bulgaria! Here is a link to their Adoption blog.

Rolling Around In My Head

I spent a few hours tonight catching up on blogs that I read.

Hunty has an Occupational Therapist from the Alberta Children's Hospital who comes to see him every month like clock work, provided mommy remembers she is coming! Tsk Tsk!

Last month our OT mentioned that she was going to Halifax for the Canadian Down Syndrome Society's Annual Conference, and I wondered aloud to her if Dave Hingsburger would be there as a speaker, as he speaks at so many conferences and this would have been a fairly large one. I told S (our OT) who he was, what he was about and kind of described him.
Sure enough, when S came over this morning she mentioned that she did indeed see Dave at the conference. He was talking to a young man with Down Syndrome who was a self advocate. S mentioned that Dave had asked the young man if he could write about him in his blog, Rolling Around In My Head, nee Chewing the Fat.

I told S that I had been slacking off in the blog upkeep department lately. Not just the upkeep of my own blog, but also in the general keeping up with of blogs I enjoy reading.

I found the post that Dave wrote about the CDSS Conference and I would like to share it with you. I cried! I know, I'm a suck. Dave is an amazing writer and I love the way he sees life. Today was his 1001st blog post! I thank Dave Hingsburger for his wonderful blog that constantly keeps me coming back for more. He opens my eyes and helps me to see the world a little differently. He constantly reminds me that I am human, that life is funny, and that people are just people. He is a wonderful advocate for people with disabilities and a teacher to all who have disabilities or people who love someone with a disability. On top of all this, he is a fabulously funny Canadian!

Keeping it Real

So The idea is to take a picture of yourself right now, no touch ups, no primping, no changing clothes, and post it before you can change your mind!

Here are my two pics! They are both awful. And I'm way fat! I took them with my cell from my desk at work! SECKSI! See me rocking the Head set! Aww Yeah!

Now to tag some folks!

I Tag Sami of course. She's my one and only constant reader.
I Tag Nana of course. She's my one and only constant reader.
I Tag Shannon from HSB as I'm sure she would play along.
I Tag My newest Blogger friend but long time RL Friend BIG DEEEEEEEEE.
I Tag Cj from her Many fabulous blogs cause she is stellar and lots of fun!

That's 5~!

I found a new BEAN!!

I have found another Bean Blog!


Meet Lucas! The Second Cutest Kid in the world!
I am officially in love! He is just the coolest little guy!
Besure to keep up with his momma's blog now and then!

Chewing the Fat

I have again found another fantabulous blog! It's Chewing the Fat!

Dave Hingsburger is a fellow Canadian, a writer, a speaker, an advocate for people with disabilities, and a witty well written blogger!

Ironically, whilst getting swept up in Chewing the Fat I stumbled on his nieces blog as well. SHES A WICKED KNITTER! Half Soled Boots is where you can find her. So now I have a knitting blog to follow.

My mom also suggested I check out Knitting harlot and her blog. I'll see if I can find her blog. For now... I'm gonna read and knit! Beat it.. I have thinks to make!

Blogger Awards!

This award acknowledges the values that every blogger shows in his or her effort to transmit cultural, ethical, literary, and personal values every day.

And in the spirit of passing along the love, here's how it works:

Step 1: respond and rework -- answer the questions on your own blog, replace one question that you dislike with a question of your own invention, add one more question of your own.

Step 2: tag - eight other bloggers to do the same.

1) What are you wearing right now?

Black Cords, My "Holland, Never under estimate its beauty" Shirt and A gray cardigan.

2) What is your biggest fear?
Losing someone in my family and being alone.

3) Do you nap a lot?
ha ha no not really

4) Who is the last person you hugged?
Evad

5) What websites do you visit when you go online?
Blogger, Facebook, Youtube, Wowhead, Wowarmory, Wowwiki, A&E TV to watch intervention.

6) What was the last item you bought?
A bunch of yarn and a new knitting bag from Michael's crafts.

7) If you could go anywhere in the world, where would you go?
Baja with my family. Or Bali with Chelly. Or Australia with Evad.

8) If you could go to the Oscars, who would you want to sit next to?
Evad and Will Smith. Evad loves Will Smith. Otherwise I don't pay much attention to celebrities.

9) Where is the last place you went on vacation to?
Last Summer Evad and I took the kids on a road trip to Vancouver to See Nana and Granddad and we saw the aquarium, Stanley park, Science world and all sorts of cool sights.

10) What is your most embarrassing moment?
I think one of the most embarrassing things to happen to me is my Ex husband who was always embarrassing and rude and drunk and I hated going anywhere with him because I knew I would be ashamed.

11) What was the last movie you watched?
Shrek 2

12) What is the luckiest thing that ever happened to you?
I can't think of anything. I met D and that makes me feel very lucky. I wouldn't have the life i have now if it were not for D.

13) If you had a whole day to yourself with no work, commitments or interruptions what would you do?

I think I would play wow. Or I would actually get bored of nothing and clean the house, do laundry all that. Or I would call Sass and tell her to come out and play!

14) Is there a major goal you have that you haven't yet achieved?

Uh Well I bought a house. I had a baby. I got married (epic fail). I think I want to achieve great harmony and balance in my relationship with D but it's hard for me right now as I'm very negative about myself lately.

15) Drinks are on the house!! What do you order?

White Russians!!!

16) Name one thing you would change about your life.
I would make my self slim and fit and healthy again. Right now, being over weight makes me feel awful and I'm not a very good girl friend because I feel gross and unattractive. Being fit would give me more time for my family.


Now to Tag people!

Momma! Aka Nana! Pam's Pages
Sammy! Blatherings of an Alter Ego
Lil Miss E's Momma! @ Little Miss E!
Tricia @ Unringing the Bell
Mary @ Hurricane Riley and his Big Brother Rex!
Dave @ Chewing the Fat
Tara Marie @ EmmaSage
Kacey @ Ella Grace with the Pretty Face!

For all of you, for the exception of Dave who posts nearly as often as I do, I'm tagging you because I love your Blogs and I'm hopping this will encourage you to post more! I need something to read when I'm at work!!

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.

Sleepy Bean! Cranky Bean!

SOOOoooo... We were having some issues in January with the Bean not sleeping well. He was waking up about every 2 - 3 hours which was enough to make his poor momma crazy. Fortunately this was happening while Nana was here visiting so I had the divine pleasure of being able to sneak in a few naps in the early afternoon to make up for the late night crying fits. This seemed to have been a teething issue and quickly resolved itself after The First Tooth appeared. Bean was once again sleeping about for about 6 hours at a time.

But there was still an issue with his sleep. Now D and I understand that the Bean has sleep apnea so we realise that he has more restless sleeps, but he still doesn't sleep as long as he should. Quite often he will wake up a 4:30 am for no real reason other than he is cold and uncomfortable. David will then bring him to bed with us and spoon with him till he falls back to sleep again, which usually doesn't take long. We tried to resolve this issue with a sleep sack but it wasn't much help. Either D would forget to put it on or we wouldn't be able to find it, or it was in the wash... we are lazy parents!

But through trial and error we came to realise that THIS KID CAN ACTUALLY SLEEP LIKE THE DEAD! But only when he is in mommy and daddy's bed. If I put him down for a nap in his crib, I'm lucky if he will sleep for 45 mins. If I put him down for a nap in our bed under the duvet with a lil pillow, he'll sleep for 3 hours! The other day we woke up at 7:30am and he was still zonked out between us and we had to wake him up to put him in the car seat.

Soooo... we got to thinking.. "Maybe his bed is cold and uncomfortable." We usually pile him up with lots of cozy blankets but he kicks them off and is always uncovered when D goes to get him at 4 - 5 am.

So the solution!!!

IKEA CRIB DUVET AND PILLOW SET!



We got a crib duvet and pillow set from Ikea on Saturday after work. He also got a brand new fancy sheet set for it too! We also bought a second duvet for UNDER his fitted sheet. This has made the mattress Uber comfy and a lot softer, and most likely makes his bed much warmer.

And low and behold last night the Sleepy Bean slept till 8:30 AM in his new, cozy, snuggly warm bed. It looks so gosh darned comfy that I want to climb in there with him. LOVE NEW SHEETS!

While we were at Ikea I picked out a new book shelf for the Beans room because I have been collecting books for him long before he was born and I haven't had anywhere to put them.

Hey Tricia, I'm going to organize his books by color! I'm stealing this idea from Tricia of Unringing the Bell Fame. This post is one of my faves! I think the ABSOLUTE best part of this post is the last picture of Georgia in her baby legs with her pig tail just spilling off the top of her head. I know I have said it before in an earlier post, but I am just addicted to Tricia's blog. She is an amazing writer and is just so creative, colorful and always a joy to read. If you have time or even if you don't, you should stop in and have a read.

We have been worried about the Beany a bit today. He just hasn't been himself. He slept till 11 am in our bed after waking up in his crib at 8:30. He had his breakfast and I gave him a bath. I put him in his swing with his morning bottle of formula and at 12:41 I turned around to check on him and he was out cold. He slept in his swing till about 3:30. D fed him at around 4 or so and let him play on the floor for a bit but he said that Bean was being a crank. I guess Motrin didn't help and when D tried to put his fingers in Beans mouth to see if he was teething he burst into a tiny fit of pain. So he gave him some Nummy Gummy (which is an Erinism that I love) aka Orajel. Apparently that tamed the beast for a lil bit but I suspect he is either coming down with a cold or he is breaking in a new tooth. I guess we will know for sure tomorrow. D is taking Mr. Sam to the Pediatrician for a referral and they said they will take a look at Beany too. If he doesn't have a fever or any other flu or cold symptoms by tomorrow it will most likely be a tooth.

Another tooth will be exciting. Today he yawned in the bath tub and I could see his tiny lil white tooth, glaring at me.. saying "Ima Bite you when You LEAST expect it momma!"

Let's hope he's feeling better soon. He was just so blah and lethargic and unBeanlike. Made me worried!

Thank You!

I wanted to say an Important Thank You to Bethany for the beautiful Beany Header!



I found Bethany through blogging. I am so thrilled to have met so many new people through the blogging community.

Bethany simply amazes me. She has a Family Blog, Life With Bubba, Chicky and Nika!,
An Adoption Blog that tells the story about Addison AKA Nika, who the Balsis family adopted from Russia, and, if you can believe it, here is a link to Bethany and her Other Identity!

She has 3 beautiful kids, 2 lil Girls with DS, Addison and Payton, and Mason, the coolest big brother those 2 lil girls could ask for, and 3 BLOGS! Talk about ambitious. Her Other Identity blog is awesome. She has a wonderful hobby/addiction to photography that she seems to have a knack for.
With that she uses her creative energy to help fellow bloggers with Headers and various other projects and goodies! I only wish I had HALF the time she did!

So simply! Thank you to you Bethany for giving me a lil bit of your precious and well disbursed time!

Ssej <3

Addiction~

My newest Addiction is

Unringing the Bell

Something about her writing style and personality has me hooked. My newest, greatest pleasure. I love reading new writing styles and hearing new stories.