Home Sick

Me and Baby are home, sick with a nasty cold.

I have us in my bed stocked with books to read, fluids to drink and many cuddles to share between the two of us.

I have to get back to my reading but, here's a picture to share of us being sick, just in case I need proof for my employer... tee hee!

I am Surrounded...

...by amazing people!

Brother wanted to take something special for Show and Tell at school today. What better than the ceramic horse he painted, remember? I am so proud of him and he is so proud of him that we were both very excited for him to show it off to his friends. We wrapped it up in a small towel and then placed it in a bag and then carefully placed it into his backpack.

He made it onto the bus safely and didn't trip or anything causing any breakage.

Then I got a message on my voice mail, "Umm, Rachael, this is Brother's Teacher. He wouldn't put his horse away in his backpack and wanted to set it on his desk... then he bumped his desk. Are you OK if I glue it back together?"

How cute is that. I am just picturing Brother's sweet teacher taking time to glue his horse together, which had broken into 4 pieces. I was so impressed with her concern for Brother that she would do all that for him. She did a good job too.

Then later Marc and I were able to go on a date because of Friday Night Kids, a group here in our area that coordinates volunteers to entertain, watch, and be with our children along other children with special needs twice a month. It is such a wonderful service they provide for children with special needs all the way up to age 21. It's so heartwarming to see all the people who are willing to sacrifice their Friday night to help out families who have children of special needs.

I got such a kick out of all the sweet college kids who were there on dates and activities to serve children who have a variety of special needs. It was so neat to see how excited the volunteers were to get to know all the kids that were there.

When we came to pick them up one of the girls had to run right up to me and tell me that our kids were her favorite ones and just how much fun they were. They were especially excited when they heard Baby count to 10.... still amazes me too.

I am amazed at the wonderful things that people do to be of service to our children!

Bent TV watching

It is funny to watch my kids get "comfortable" when they are watching TV.

Sister can't sit still for very long so I guess if she is going to sit still
it's got to be something that gives sensory input. 

(Sometimes she hangs off the back of the couch upside down...)

It just reminds me how old I am because if I were to watch TV like that,

my back would go out... ah, the flexibility of youth.

Notice her pink cowboy boots... ya, they're cute.

My Grandma Vivian died today

My dad called me early this morning to let me know that his mom had passed away.


I didn't cry until I heard my dad getting choked up trying to fight back the tears.

I had the responsibility of calling 3 of my siblings to be the bearer of bad news. That was tough.

I have never had to do that before.... be the one who has to tell a person that someone they love has died.

Once I got past the emotional phone calls I realized that I was not crying because she had died because I knew she had been suffering for a long time, I was actually glad that she could be with her hubby up in heaven. I know she has missed him these last 15 years. I think I was mostly overcome with the empathy I had for my dad. I don't care how old you are, you still think your parents will live forever.

I haven't been to see my Grandma Vivian since the last Christmas.

I know, that's terrible.

I should have gone.

I just couldn't bring myself to see her in so much pain and so seemingly unaware of goings-on around her.

Maybe I just saw the wisdom in Brother's philosophy... he didn't want to remember her suffering. He wanted to remember the time he held her hand at Christmas last year.

We all deal with grief in our own ways.

Brother cried pretty hard for about 5 minutes and then he came to grips and was able to realize that his Great Grandma Vivian would be able to keep his other Great Grandma company in heaven.

We had a family gathering tonight.

Brother and Sister both gave my dad a hug. I am positive it is because they sense his sadness in losing his mother.

I am re-posting the entry of Brother with Grandma last Christmas, because this is the kind of stuff all of us should remember... (you can skip all the way to the part that starts with Brother)

Our last Christmas with Grandma Vivian

My take on Out-takes

See this...

This is a pause button in my real life.

I try to be as real as I possibly can on my blog because I want people to know who I really am. But, lets face it, this is a blog. It's kind of like internet dating... you really don't know the person officially till you meet them and see all their zits up close and personal.

You may never meet me in person, nor I you. Don't let cyberspace fool you.

Just because I can joke about life raising children with Fragile X Syndrome doesn't mean there aren't moments like these where I just have to say, "stop!"

In my big (and I am noticing it is getting bigger) world of children with special needs I get so tired of all the stuff that "government" or "professionals" try to tell us is the only/perfect way to raise our children. What do they know? I want to know how many of these people telling us what regulations are to be put on our children with special needs have actually raised children with special needs, let alone known any.

Brother and Sister were both able to start early intervention playgroup at 18 months old.

It made a world of difference for them.

But, by the time Baby had reached 18 months, the "professionals" had decided that a play group full of special needs children at that age is not a typical social situation for children with special needs... yep, you read that right... so basically, my child is not supposed to play with other people like herself because they won't teach her the right social skills.  (And I hear rumor that they may do away with the playgroups for early intervention all together and they won't get help until they are 3 with the school districts...)

Hmmm... OK, let's put this in perspective here.

So at 18 months when Baby was barely babbling, unsteadily walking, intimidated by crowds, nervous around loud noises and bright lights to the point of uncontrollable crying these "people" want me to set up a play date with children who are running circles around her, talking up and down and running like toddlers do.

Let's think about that for a moment...

I went through it with Brother...

I heard these kinds of things from the other moms the entire play date:
"Oh, don't worry my kid wasn't talking until his sister stopped talking for him..."
"Umm, does he not walk yet? Oh, maybe you should try this..."
"Your son just bit my son!"
"Oh, umm, does he not understand that? ..."
"Have you had him tested for anything? ..."

And then there is me on the sidelines wishing that my kids could do what their kids are doing, pining away at the thought that they may never be like the other kids, yet holding on to hope that they will beat the odds.

So is that what the "professionals" call typical?

I'd like to see the study's they have done to show that children with special needs shouldn't have playgroups with other children who have special needs.

Here's my take on that out-take:
Fooey!

My children are embraced by their peers who also have special needs. And because of the confidence they have built by having strong relationships and dedicated friends they can face the "typical" children in stride because they feel comfortable with who they are.

I don't want Brother, Sister or Baby to ever feel like they shouldn't be hanging out with their friends with special needs because they won't be able to reach for the stars while in their presence.

These are my life's out takes that I deal with everyday.

We don't always dwell on them because it is not what I want to dwell on.

But, sometimes I think that a voice needs to be heard.

Special or Typical.

It doesn't really matter.

We all have a voice.

Stop reading children with special needs like black lines on a white paper.

Stop studying and start listening.

And that's my take on it.

Oh, and because I love real life, here is some more out takes for you:

Squirrel!

Let's face it, I am just not a serious person... but now I know where Sister gets her smile...

Halloween Happy

The excitement and anticipation about the social behaviors of Halloween had my kids all going different directions about their feelings of the holiday.

Brother was so excited for Halloween to come at school that he got his costume set out and ready by Saturday night. He was so excited to show everyone his Disco Ball costume...

I went to his costume parade at his school and he wasn't too happy to see me there... well, let me rephrase that... he was hyper-aroused when he saw me there at his school, which is not typically where I belong in his world. So, he yelled, "Go away, Mom!! Go home!!"

You would think that would have hurt my feelings and I actually think that there were a few mom's shocked by his behavior and felt sorry for me. I am used to it now though and I know that he doesn't really mean what he says and he is actually happy I come to those things, he just doesn't know how to handle it... so he lashes out. 'Tis a Fragile X thing, se la vi.

On the opposite end of things, I went to Sister's costume parade later on that day and she was ecstatic to see me there. I didn't even get a very good picture of her because the "buddy" she was walking with was dressed as a donut... but, hey, I ain't complainin', I am just glad she had a buddy (smile)

She has her horse costume on, it doesn't seem to bother her that the horse is hanging so that
you can't tell what the heck she is dressed up as... tee hee hee. Guess she didn't want to hold the reins... that's a change.

However, as we were waiting for the parade to start Baby decided to be brave enough to join in with the other kids playing in the gym. I got so much enjoyment watching her "play" with the other kids.

Baby is the one in the piglet outfit... I love that this girl is trying to involve her in their game.

And here she is acting like she owns the place.

Well, by the time Brother got home he was through with Halloween. Trick-or-treating was out of the question, so he got into his regular clothes and resorted to his man cave and watched TV and sang with Shania Twain on his iPod. He has NEVER liked trick or treating. I have always made him go. I don't really know why... I mean, really who cares, he's going to houses and asking for candy he probably won't eat unless it is Sweet Tarts, Smarties or sour somethings. I guess I just wanted him to be as "normal" as possible. This year I decided to accept HIS normal and let him be free of the anxiety Halloween brings him.

Sister was very excited to go because that is what she has learned Halloween is for and she loves to do the social thing, even if it only lasts a moment. We went about 2 blocks and that was plenty. She had enough candy and enough experience.

Baby lasted 3 houses.

How much candy do I really want her to eat anyway?

So because I have come to realize that my children don't LOVE trick-or-treating, I wanted to bring back the good ol' Halloween I remember.

I grew up in a small farm community and we were quite close to many people, especially the older folks. My mom's birthday is on Halloween too and because everyone knew that it made trick-or-treating even more fun. We didn't just go from house to house, ding the doorbell, grab candy and run, our Halloween was a tad different. Houses were not very close together so my mom would drive us to each house and she would come with us. Some people would have a special treat awaiting my mom for her birthday and others would invite us in for special treats like caramel apples, donuts or cider. It was so much fun to see the smiles on the widow's faces when us kids and my mom would come in for a bit to show them our costumes, visit and eat treats. Our Halloween trick-or-treating lasted a few hours but, we didn't come home with pillow cases full of candy but hearts and minds full of good memories.

So in honor of the tradition I have tried starting my own tradition that when families we know come to the door we invite them to come in for homemade hot apple cider pumpkin spice cookies, a kid-friendly Halloween movie going in the background and just some good socializing. Sister loves it, and really looks forward to giving the candy to the trick-or-treaters. Marc and I love it because we get to socialize and open up our home to our friends without forcing our kids out of their comfort zones.

It was so much fun and I do hope the tradition grows because it brings the feeling of fall and family. This is how we make our Halloween happy.

The First on The First

So, today was our first big snow of the season on the first of November.

I still can't believe it is already November.

I stifled my desire to listen to Christmas music today.

But, I am sure I will give in tomorrow.

I didn't manage to get pictures, really of our Halloween celebration (but I will tell you all about it next post).

I did get, however, pictures of the kids enjoying the first snow of the season...

Sister was the one who started it and soon, Brother and Baby were out there with her.

After falling down a few times, Baby decided to just stand in one place...

and she stood

but, she fell anyway

Brother was a good helper

It was fun to watch them play outside and Brother and Sister even joined in making snowmen with the neighbor friend. Yay! I love it when they socialize!

And to end off with, I just thought this looked cool since the snow came before the leaves fell off it was a contrasting sight, although I think maybe, a few limbs got bent from the weight...