Last day of Down syndrome Awareness Month: What I really want you to know

Today marks the last day of Down syndrome awareness month.
I have thought for a long time about what it is exactly that I want people to really know about my son who has Down syndrome.

Many things run through my mind.

*He is More Alike than Different.

*His is a Life Worth Living.

*He is Capable of Any and Every Thing.

People with Down syndrome lead productive, meaningful, independent lives.

*That he IS a "typical" child, he just goes at his own pace.

*That the word Retard and Special Olympic jokes are NOT funny!

They are cruel and hurtful and demeaning.

*That my son is not defective.

 And despite those who disagree, and all the new testing available now to eliminate and weed out children like mine...

Russell is just as deserving of life as ANY other child.

*Russell is not a burden to his family OR to society.
He has great worth and value.

But I think the most important thing to me, the one thing I really, really, want for people to understand,

Is this...

That Russell, and others with Down syndrome are in fact very intelligent.

They do understand the world around them and every day things.
They do know when they are the butt of jokes or left out or treated poorly.
They do realize and are aware that they are different.
They are not oblivious to everything around them.
When you talk to them...They DO understand.

They are smart.

I guess why this point is so important to me is because I feel it is the biggest misconception children and adults with Down syndrome face.
People think they are dumb...Or that they only progress mentally to a certain point, and that point being one of only a child.

And all this is simply untrue.

People with Down syndrome graduate, go on to college, live independently. Hold jobs, have drivers licenses, get married...
They have good lives.
Some people with Down syndrome may not be capable of some of the things listed above.
But I know many "normal" people who are not capable of some of the things above either.
Each person is different and each has different abilities and strengths and weaknesses,
Down syndrome or not.

All I can say after raising four "typical developing" children before Russell is this...
That Russell's mind works in the exact same way.
He functions in the exact same manner.
He is every bit as smart and aware as my other children are.
I do not see a single difference in the way Russell thinks compared to other children.
There is nothing wrong with Russell's mind...AT ALL.

And I wanted to add this because I think it is beautiful.

The Child, as yet unborn, spoke with the Father.

"Lord, how will I survive in the world? I will not be like the other children, my walk may be slower, my speech hard to understand. I may look different. What is to become of me?"

The Lord replied to the child.

"My precious one, have no fear, I will give you exceptional parents, they will love you because you are special, not in spite of it. Though your path in life will be difficult, your reward will be greater. You have been blessed with a special ability to love, and those whose lives you touch will be blessed because you are special"

Some steps on tape!

Ok, so I finally got a very short video of Russell taking some steps...He is not the most co-operative child so it was difficult. Now he can take many more steps in a row than is seen here on the video and he does it by himself between furniture and stuff...But in our attempt to capture him taking steps on camera we had to "stage" the event...So this was the best we could get! lol

Notice how when he gets close enough to where he is going he will lung at it from way back instead of walking...Little stinker! We are trying to slowly build his confidence by making him go greater distances when taking steps. Its a slow process...But an exciting one!



My hopes for Russell walking remain the same.

I hope he will be walking by spring. His PT thinks he will be walking well before that time, but I don't want to get my hopes up.

 He is taking steps, and it is fantastic and thrilling, so for now we are good with that and very proud of Russell and all his hard work!

And Russell's little friend is growing and getting bigger also...He is not walking quite yet either.

lol

He still remains nameless...We will have to decide on one soon!

We brought him in from the barn the other day to visit Russell...At first he wasn't to sure what to think of his new friend.

But he warmed up to him.

He even touched him!

He was more gentle with his pup than he is with his baby cousin!

Hopefully this time next year these two will be running around playing together!

My boy. He is so darn cute!!

Notice his little boots...I bought them cause they are just like slippers so they are easy to put on if we are just walking across the field to visit my parents...

Well, Brad HATES these boots! He says they are to sissy!

Needless to say, I am quite certain these boots will mysteriously going missing in the near future.

What's with guys wanting their boys to be so rough and tumble?

I think Russell looks adorable in these boots and I could care less how "sissy" he looks!

23 Months...And reflection on two years.

This will be my last "Monthly Birthday" post for Russell...Because next month he will be...

TWO!

I cannot believe two years has gone by already.

Two years!

And a part of me says this in a sense of...

"Its been two years since "it" happened"

Two years since we started our journey.

Two years since we felt that earth shattering blow.

Two years since I cried those gut wrenching, agonizing, tears.

Two years since I felt my heart break and asked "why me?"

Two years since we first heard the words Down syndrome.

Two years since our lives changed forever...For the better.

It has been two years since I fell in love with those big beautiful brown eyes.

Two years since this smile has melted my heart every single day.
Two years since this laugh has made me laugh too.

Two years full of a mischievous, naughty, fun loving, little boy.

Two years full of laughter and joy.

Its been two years of me knowing I could not possibly live without you.

Two years of loving every. single. thing. about you.

Two years of realizing that yes, you are different, but in no way less than.

And being different does not mean you are not perfect...Because you are!

Two years of me learning that you are exactly who you were always meant to be.

Two years of hard work and constant ongoing celebration.

Two years of learning new things and different ways.

Two years of opening our minds and our hearts to things we never thought of before.

Two years of learning a new language.

Two years of meeting new people and making new friends.

Two years of being embraced into a world we never knew we wanted to belong to.

Two years of ups and downs, highs and lows.

Two years crammed packed with learning and growing.

Two years of being blessed to call you our own.

Two years loving and cherishing you.

Two years of having the gift of Russell and the honor of being his parents...His family.

Next month you will be two...And we celebrate all these things and so much more!

Happy 23 Months Russell.

You are so loved.

A Brothers Love

Sometimes when the other kids are in bed for the night, Raist and I sit up talking...Lot's of times we end up talking about Down syndrome...He asks questions and tells me his thoughts...And I am always so very proud of his thinking and his feelings about his little brother.

Last night Raist was telling me how in class the other day two kids were joking around and one called the other a retard. Raist said the teacher jumped on it immediately and told them how inappropriate that word was and that we are not to use it. He then took it a step further and asked the kids how Wyatt, a boy in their class with Autism, would feel if he heard them say that word.

And this is where Raist spoke up and said
"Yeah, and my little brother too, he has Down syndrome, and I don't like that word either."

So I sat there listening to my son talk with tears running down my face because I was so proud.

First I was very touched that a teacher had stood up and told those boys that word was not acceptable and then went on to explain why we don't use it, and how its hurtful to people with disabilities.

I was just so happy to know a teacher had taken the time, just a few minutes out of their day, to educate these children on something he didn't necessarily have to.

He went above and beyond his job.
He did what the parents of these boys should be doing. Teaching their children compassion and respect.
I think in todays world parents slack when it comes to raising their children and teaching them values...And where they slack teachers over time have had to pick up for that...I mean think about it...If parents were investing more time in teaching their children how to be good decent people, schools would not have to have assemblys and workshops on bullying and teasing.
These are things parents need to teach at home. Not teachers at school. They have enough to do without having to teach our children morals and values.

 I have to say I know many teachers let that word slide...After all its not a swear word...Its not a "bad" word.

I just hope and pray, that this teacher is still teaching in our community when Russell goes to school.
And I hope there are others like him who will take the time to correct young children when  they use this word as slang or in fun.

And mostly, I cried because I was proud of my boy and the young man he is becoming.

Raistlin has a wonderful spirit. He always has.

He is fiercely proud of his brother. He is not ashamed of him in any way.

He sees his brother for exactly who he is.
He sees Russell.

And I am aware that my children do not fully understand all the ins and outs of what exactly Down syndrome is.
But you know what, they don't need to.

The only thing I care about is that they fully understand how amazing and wonderful Russell really is.

The only thing they need to know at this point, or ever, is that they love their brother...

And yes, he has Down syndrome.

Just a Boy

I remember the day we were told Russell had Down syndrome like it was yesterday.

I can still feel it very vividly. I remember everything about that day.

It was the day I felt I lost a son rather than gained one.

It was the day I cried my heart out thinking my son would never do "normal little boy things"

Simple things...Like play with trucks or cars...Simple things like playing with the dogs. Things like climbing trees and riding horses.

I mean all I could think of was...DID little boys with Down syndrome run around and laugh and play? Did they love dogs and horses...Did they play with trucks and army men? Did they climb trees and read books?

I had never seen a child with Down syndrome.
What were they like?

And its funny to think back on those thoughts now...Now that I know my son, now that I know Down syndrome...What did I think Russell was if not a boy?
Was he some sort of creature or monster? Was he not a human child?
My child.

The truth is, I did not know Down syndrome...And so I did not know what to expect my son would be.

I was ignorant, I was foolish.

When I found out Russell had Down syndrome I thought the boy I had hoped for and dreamed of was gone.

And that was silly of me to think or feel, because it is simply not true.

Russell is all boy.

Russell loves little boy things...Like trucks and cars...Just like every other little boy.

Sometimes when I am looking through my pictures of Russell I sit back and laugh.
I laugh because I know why I took some of these pictures.
Sometimes I take pictures of Russell doing every day, nothing special or extraordinary things...Because they were the simple things that in the beginning I foolishly thought Russell would not do.

Things like playing with trucks.

And that's exactly why the pictures on this post exist.

I took them when I had tears in my eyes and a joy in my heart...Because I had the knowledge

that my boy was just that...A boy.

Russell is not the boy I hoped and dreamed for...

He is just so much more!

And by the looks of it, this boy is one day going to be a tree climber!!

What do I want for people to know about my son who has Down syndrome?

Is that he is just a boy.

A friendship between cousins...It's a work in progress!

A great PT visit...And the battle for Russell's affection!

Russell had a really great PT appointment today!

It was one of those times where after the appointment ended I felt good about things...Really good!

And it felt good, to feel good!

From day one I have struggled with getting use to all the appointments and therapies...It has been hard for me. I remember sitting on the Hospital bed right after Russell was born as the Social Worker went through a list of all the "people" she was going to set me up with...All the "workers" Russell would need.

I remember just wanting to be swallowed up into that bed and to disappear.

I remember thinking "I don't want this, any of this!" I remember thinking I wasn't cut out for all of it...I couldn't be "That Mom"...I didn't want to be the Mom who's world revolved around her special needs child...

It all sounded so overwhelming, all consuming....Something far greater than I was capable of...And I just plain didn't want to do it!

Ugggg...

That is a terrible thing to admit to isn't it?

But that's how I felt those first weeks.

But now here I am almost two years later and its not that bad...In fact its not anything near what I thought it would be. Sure I bitch and whine about this or that...Therapies and "homework" we are given...

But its not THAT bad.

Whats hardest for me is after having four kids I am having to learn a different way to do things.

That my heart aches to be able to raise Russell in the same easy manner I did  the others, but I cant.

Russell needs more...Russell needs different things and to learn in a different way.

And that's just the way it is.

 And so I find myself sitting there fighting back tears as I am being taught how to feed my fifth baby.

It just stings a little sometimes.

For the record...No matter how often I grumble or complain, I am so very, very grateful that Russell receives these services...Because he needs them, because I know he benefits from them.

Our workers are the best, I love each one of them...(Except our SP, lol)

So I may vent a little on here every now and then or claim the appointment was a waste of time and annoying

(well some of them actually really are)

But I am thankful and I realize how blessed we are that Russell gets these therapies.

So there that's it. I bitch and whine...But I know its necessary and worth it.

Because in the end its not all about me...Its about Russell and his needs.

Doesn't he have the most fabulous smile!

I love this kid!

So what made today's appointment so great was for once I felt like someone was on my side...Some one else saw things the way I did...And it had to do with Russell and walking.

For the longest time I have been saying that the walking is all up to Russell now...No one is going to make him do it. He has to feel ready all in his own time...No amount of "therapy" or "working" with him is going to speed that up at this point.

Now these are thoughts I spout off on here, or to my family, not Russell's workers.

So today after watching Russell for over an hour and seeing how he moves and pushes things and takes steps...She said he will do it on his own...That we cannot rush him...That at this point its his personality and fear holding him back, not his ability.

Finally! Finally I feel I am right for once...I feel so relieved. So FREE from therapy! lol

I was just really happy someone saw what I did without me having to say it first...And that someone being our PT.

She also said things about how Russell moves, how him taking longer to walk doesn't mean anything because he is learning each small step correctly and properly before moving on to the next...We are looking for quality in his movements, not speed, when it comes to him walking.

She told me that once he starts walking, which she seems to think will happen well before spring...But we will see, I don't want to have my hopes up!
She told me once he is up and walking he probably wont need to see her anymore. Of course she is available to us if we need help with other things...But just knowing there is an end in sight with all the therapy stuff...It makes me happy.

Because I honestly cannot see us needing this service for to much longer...I think as PT phases out we may need OT more, and then of course SP.

But I like the idea of phasing out of some of them...sigh...Something to look forward to!!

The only thing she wanted us to do to maybe help Russell is have him wear his shoes in the house for a couple hours a day...This because he does still seem to lean in on his ankles a bit, not much, but some.
He gets to wear his everyday normal shoes though...Nothing special.

And even something as small as that, makes me happy!

So today was good. Today was better than good...Today rocked because I had a PT tell me what I was already thinking...Because there is a tiny bit of an end in sight for the amount of therapies we need.

Tonight I feel happy. Such a turn around from yesterdays appointment.

And I will leave you with this picture...Amy was laughing her butt off in the bathroom because she made Russell look like Alfalfa!

And if you missed the battle for Russell's affection read these two posts! HILARIOUS!

And I just figured out tonight how to link up to the specific posts...I am a slow learner when it comes to this  "technical" blogging stuff!

There is no way Russell can EVER choose between these two lovely ladies!!

Chubbs Vs  Lilybird

Pointing and stuff

Look what Russell is starting to do!

POINT!

And I realize that to most parents this is not a big deal...But to us it IS!

Pointing is another form of communication, so I am very excited to see Russell doing it now!

The pictures above are just photos on our fridge...We would say one of the kids names and ask Russell to point to them and he would!!

And  another thing...

He is getting better and better at standing up without ANY help! You can see in this picture he just uses my leg for a second to steady himself before getting up by himself.

I always love the look on his face...He is so proud of himself!

He knows he is accomplishing something!

And that's all I have for tonight because today was a crappy day and I am exhausted. Our OT visit today was a bit much for me...It was one of those days where everything just seemed to annoy me.

Our high chair isn't "proper" enough...Russell needs to be strapped in...With towels stuffed in at the sides to make sure he is well supported...Also our highchair needs a foot rest because that would help Russell chew better!!! FRICK! Russell is our FIFTH and "unplanned" baby!!! I sure as hell am not going to run out and buy a new high chair so he can chew better!

Ya, that's right I am a HORRIBLE Ds Mom!

Whatever...

Also it was nice to have the fact that our table chairs are a bit to high pointed out cause I am all about buying us a new dining room set...I need to be sitting lower than Russell...So I'll be needing a new chair or something for when I feed him...

And the crackers I bought, well, they just don't have enough flavor so I will need to dip them into something so that Russell can taste it better and his mouth can be more aware!!!!

And YES, I get all the medical and therapeutic stuff behind all the things I just mentioned! And I am not saying I don't agree with them or realize their importance.

It's just today everything seemed like nonsense, and I am allowed to have those days.

*Sigh*

The truth is sometimes I don't think I am cut out for all this...But that's a whole other post!

Ok, I am done my rant...Off to bed cause we are up bright and early with PT tomorrow!

Peace signs

The other night as I sat in the living room in somewhat of a bad mood for some reason or another,

 my oldest daughter walked in and said

"What's wrong Mom, are you mad? Ooooh, you must have saw what Jordyn did!"

Of course she said this with a big ol grin on her face...Amy has a horrible habit of being overly excited when she knows some one else is in for trouble!

I instantly shot a look at my youngest daughter and yelled

"What did you do!"

Jordy drops her head in a fashion similar to this...

And says "You're just going to be mad"

And for the record this forlorn look of hers NEVER fools me!!

This is her, "I'm sorry but not really sorry", look!

So Jordy is hanging her head in shame, Amy is grinning away...I jump up and start going down the hall...

And this is what I see...

Peace signs...

EVERY WHERE!

On walls...

On doorways...

On mirrors...

On windows, on dressers, on pictures...

EVERY WHERE!

Peace signs.

*sigh*

My first instinct is to screech at the top of my lungs

"Why would you do that!!!!"

But I take a deep breath...And then realize that considering this is JORDY we are talking about I should just be thankful, there are a lot worse signs she could have drawn all over my house rather than the peace sign

*sigh*

So I told her to not draw any more peace signs or she was gonna get it!!

I was pretty sure I got my point across...I mean I can be scary when I want to be!

Although Jordy is the one kid who shows no fear in me...That's probably why we struggle to get along!

Anyway...

As I was closing the curtains in the living room I looked down at the window sill and saw this...

Math equations

*Sigh*

At least she got the answer right.