Millie. Again. Still.

She still needs a home.  She needs a home like yesterday.  It will take a year for the whole process so someone needs to step up today.  Read about her here http://reecesrainbow.org/21839/millie-57-2  can't adopt her? Donate to her HERE

Kids & choking

Emily is 9, actually, she's almost 10! Even at 9y 11mo Emily puts everything into her mouth, it starts with her tapping her lips or teeth with it and then she may or may not stick the object into her mouth. Has the behavior improved with time? Yes, but, she still puts interesting things in her mouth. SO, we don't leave things that are dangerous around (small magnets, push pins, sewing needles etc.) There are however things I wouldn't think about and the following blog post is one written by a friend of mine, her daughter is still in the hospital and I would very much like to pass on this information about button batteries. When I first heard about Kellsey, the battery and the damage that it has done I was shocked and scared all at once.

There is one other choking hazard I would like to mention, dryer sheets. Another friend had a daughter that swallowed a dryer sheet and it got stuck! Think about the surface of a dryer sheet and you'll see how easily that could happen. Thinking of that episode always makes me panic a little

Short sighted

This article written by Carla Lohr, points out how people can lump all with disabilities into the same pile. Are there some who are overprotected because they have disabilities? Yes. Do most parents want to see their children do as much as they can on their own? Yes, I think so.

In Miss. Lohr’s article she writes, “In an effort to make life as comfortable as possible, some parents will seek out special schools, groups, or activities catered to their children, so that they will only have to deal with children who share their disability Obviously, no parents want their children to have to deal with feeling different, being left out or being hurt by questions and curious looks. They don't want their children to deal with the frustration of trying to fit in and not always succeeding. They don't want them to get discouraged, and they don't want life to be any more difficult for them than it already is. In theory, this practice seems like the ideal solution. In reality, it can have devastating effects.” In practice the author seems like a wonderful do-gooder. In reality Miss. Lohr is naive and ill-informed.

Without organizations like Special Olympics and Challenger Sports my daughter wouldn’t be able to participate in team sports. This isn’t something I have made up in my head, this is fact. My daughter goes to a typical public school but she is in a self contained class, we did the general ed thing and it was a nightmare for her. This isn’t my imagination, I’m not trying to be overprotective, I am trying to get the best education I can for her.

I often equate special education today to the woman’s liberation movement. Because women before me fought for their place in the workplace I know have so many options. I can work full-time, part-time, mother’s hours, as needed or not at all.

There isn’t a one size fits all solution for people with disabilities, just as there’s no one size fits all solution for any subset of society.

365:54

Please note that we were out in a parking lot of a car lot and she was not wearing her seat belt since we were waiting on the guys to get done. SHE DOES always have her belt on when we are driving.

Discriminating against ourselves

Discrimination is ugly. Sometimes discrimination is obvious, purposeful and evil and sometimes discrimination is accidental. My daughter has been the victim of both.

The discrimination that hurts my heart the most is what I am going to call disability on disability discrimination. I bet you’re wondering what that is. In the world of disability only the kids that are at the very top are celebrated. If you look at the National Down syndrome sites, their sites are full of stories that shine lights on kids and adults that are on tv, go to college, exceed in dance classes, write their own books, own their own businesses but kids that for the first time ever was able to walk through the store without having a fit? No, not the kind of spectacular story they are interested in.

Then there’s the “one up club”, this is the most insane “club” you will ever meet. It consists of parents who are constantly looking to one up you, constantly pushing their kid’s achievements down your throat. Oh little sally is in the 4^th grade, she’s fully included and doing 5^th grade work! Pumpkin is 4 years old and already knows how to balance the family checkbook. I used to drive myself totally crazy wondering what the hell I was doing wrong that my child couldn’t be among typically developing peers in her age group and do the same work they are doing, talk the way they are talking, in short how had these children with developmental delays morphed into typically developing children and mine couldn’t? I looked for pills, potions and scoured Google, I found no magic pill. The truth is that their parents were lying, or rather stretching the truth. Not sure if they meant to or not but by trying to boost their own child, they discriminated against mine. They were saying “our kids may both have the same extra chromosome but clearly, my kid is better than yours”. Was this on purpose? I would like to think NO but I there’s a part of me that says it is.

Let me tell you, fully included does not mean that the kid is doing the same grade work as their peers, fully included often doesn’t even mean that the kids are in the same class all day. The words “fully included” lead you to conjure up images that can make you wonder what you are doing wrong. These kids often go to a resource room for 1:1 help OR they have 1:1 aides in the class OR they are doing 2^nd grade work in 8^th grade. Don’t allow the words “fully included” scare you into thinking that every other kid is on par with grade level and yours isn’t.

So, then we turn to the Autism world, surely this is more the “home” we’ve been looking for, but, most of the activities are for kids with mild delays or Asperger’s syndrome. UGH same deal , different diagnosis.

My child is nonverbal, this leads to her being harshly judged by everyone, this has lead to behaviors that have alienated us because people look at my kid and think “oh my, she’s not fit for our company” I have actually had friends bless their life after looking at how she has behaved and her behavior is directly related to her being nonverbal because she is smart, but she gets frustrated by a lack of communication. Try it someday, go through the whole day without talking OH and her fine motor skills are awful so she can’t write SO no writing to get your point across, TRY IT, I promise you, you will have a whole new respect for people that have to communicate without the spoken or written word.

It has taken me a long time to understand that I need to get all those people out of my head; they are the ones that can’t see the beauty in my daughter’s achievements. What comes so easily for most children can be years in the making for my girl but, then, you turn around and with the help of technology there she is putting a sentence together “I want to watch tv, I want to watch Barney” and in your entire life you have never been so happy, so grateful so completely in awe. You learn quite quickly not to take the world for granted.

CRASH 365:52&53

My son's car was hit while parked :( turns out that it was totaled. It took up two days of our life. he's quite upset but as I said to him life is full of ups and downs. We will get another car and things will move forward.

I just love her SO MUCH

Busy Sunday

I had to get some grocery shopping done and was proud of my coupon and store sale savings :)

Meanwhile back at home Billy was trying to get the ceiling fan down (a six week project) and was having a hard time with it. The trick is that the ring against the ceiling has to be broken off to expose the screws.

Later we had his family over.

Valentine's dinner

Tonight we went to the Hibachi grill at Yuki Japanese It was really fun and the food was pretty good. We were seated with a bunch of college kids celebrating their 20 something birthday's. They looked at us like the old people and it was pretty darn funny.

Sick

Husband was sick today so I didn't take pics of anything. I will say it was nice to have time to myself since everyone else was in bed by 8pm ahhhhhhhh alone time :) I did have a glass of wine and relax.

Basketball :)

Tonight we went to SO basketball. This was Em's first time doing Special Olympics or any kind of organize ports and it was really kinda fun :)

Today, is about Millie

Today I am sharing Millie.

I should have shared her yesterday on Valentine's day but today will have to do.

Millie is an orphan with Down syndrome and she needs a home; TODAY.

Adopt Millie TODAY

People often ask why I care about a young girl that's half a world away from me and the answer is very simple; she needs someone to give a damn. I know that if my own daughter was in and institution she would not have come this far AND like my daughter Millie is nonverbal which makes her extra vulnerable, she cannot tell you when something is wrong. SO, I keep caring, posting, praying and hoping that someone will see her and be able to adopt her. Is that someone you?

Happy Valentine's day

Today was a good and bad kind of day.

The good, I got some great loot from my Valentine's :)

The bad :( I had a really bad mommy tantrum in the morning and it made the rest of the day really stink for me. I made cupcakes for Emily as peace offering and she seemed to be all good with that.

I hope your day was full of LOVE

365:44

Today Emily, Nicole and I finished up the Valentine's that were going to Emily's class, they were started in this post here's how the whole thing came out :) i like how the layering really makes her artwork pop :)

365:42 & 43

The kitchen project yesterday got me to thinking and today I decided to take down paneling in one of the downstairs rooms, this room has become our dumping room for everything we don't know what to do with.

Here it is with the paneling

Here is the room after, the walls are in pretty good shape and now I need to figure out paint.

365:41

So when we got the house last year one of the annoying things about it was that there was CARPET, yes, carpet in the kitchen!!!

Well, I have been hesitant to take it up because

I was worried about what might be under there.

Today, I took the carpet up &

THIS is what I found. Yes, the pattern is ugly BUT the floor is in great shape

365:39 & 365:40

Kidney stones were the words for these two days and I was in no mood to take pics or post pics ALTHOUGH it would be cool if I could get my xray's from the dr!

Giving thanks

We have come a very long way with Em, there was a time where her behaviors were so destructive that it was all we could do to get through a day. I think back a few years ago and I sometimes ask myself how we got through some of those days. We’ve come into an amazing place with Em, she has calmed down and tuned in. Sometimes, when you’re in the thick of situations you can’t step back and see the growth but when the dust settles, it’s amazing to see how far you have come. I don’t know what clicked, I don’t know what changed but I do know that I am so thankful for the changes.

There’s no guidebook to raising a child with both Down syndrome and Autism, it’s a bit of trial and error and A LOT of connecting with others and learning from what they did right and wrong. If there’s something that I could share with another parent it would be to keep striving for the next goal, don’t let the excuses pile up.

365:38

Half day at school today so we went bowling

we had a great time :)

365:37

All floors in dr's offices seem look alike!