31 for 21: Day 31

It is the last day of the challenge and I didn’t want to forget to answer one of the questions asked of me.

A friend had asked if adults with Down syndrome were able to have children.  And the short answer would be yes.  However, adult males with Down syndrome have higher infertility rates than those of adult women with Down syndrome.  There has been one case, in which a male adult with Down syndrome fathered a child who was born without Down syndrome.

Adult women with Down syndrome can become pregnant and carry to term.  About 50% of those births will result in babies being born with Down syndrome.  Some women will also carry babies who are not born with Down syndrome and have no other disability, while other babies will have some other medical related issues.

The fact is, adults with Down syndrome can and will enjoy an active sexual life.  They still need proper sex education and guidance as any other active adult.  Also, adults with Down syndrome can marry and live a very happy life as husband and wife.  Such as Monica and David.

31 for 21:7

Did you know that Divorce rates of families with Down Syndrome are lower than the general population and with families raising children with other disabilities?  I think that is pretty amazing!

I believe the study was published in January 2008…a month before Lillian was born.  It is a pretty short and interesting read, you can go to the article and read more if you are interested.  The study also tells us why they think it is, but I’m not too sure if I agree with it 100%, but I still like that there is evidence that our families tend to stick together, better than other families!

Two and half years after Lillian arrived, our family is still together and loving every minute of it!

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31 for 21:5

Yesterday, I mentioned about some blog post ideas for this challenge. 

On my way home last night, there was this big black truck right behind me.  Like on my butt behind me!  So, I changed lanes to let him pass.  Here’s the thing, the road we were on has a gazillion stop lights, so I never take off fast and push the gas, because you just won’t make it pass the other light.

So, we both had to stop at the next light and I just knew he was ready to take off and try to pass the next light before it turned red.  The light turned green and there he went and I just took my time…and he was there waiting for me at the next stop light.  This probably happened for the next five miles as it seemed we were heading to the same destination.  No matter how fast he went, I was getting there on my own time.  And I knew he was still going to be there.

This whole scenario kind of played out in my mind about the kids with typical development and the kids with Down syndrome.  The black truck, to me, represented the typical kids.  On the go, pushing hard to get to the next step and going as fast as they can until they have to pass onto the next milestone.  My mini van represented the kids with Down syndrome.  We take our time, but we know we’re eventually going to get there.  And the joy we get knowing that when we got there the other person is still there, waiting for the go.  They go and we catch up.  And the best part is we are all going to the same destination.  The van may have more stops, but eventually we will reach our final destination.

I’ll let you decide what that destination can be…I already know what ours is!

31 for 21

 

Grab This Button

Today marks the 4th Annual 31 for 21 Blog Challenge.  This will be my third year participating and I’m hoping that I will complete this challenge without a flaw, as last year I didn’t so well!

The meaning of 31 for 21 is very to the point…blogging for 31 days straight to raise awareness of Down Syndrome or T21.  As much as I would like to enlighten everyone (that is not part of the Down syndrome community), let it be known that not all 31 days will only be about Down Syndrome, or maybe it will.  But, I hope that what I blog about the next 31 days will help understand and appreciate how Down Syndrome isn’t ugly, but beautiful in every single way!

Please take the time to read other blogs who are doing this challenge.  As we all share a common link, our children and our lives are very different.  The 21st chromosome is the only thing that brings us together.

I hope you will find love and happiness here…

Game Over

The kids and I have been spending a lot of our free time at the base pool.  The weather has been nice and I needed to even out my tan (I'm about 4 different shades of tan right now!)

Well, the other day, I was in the pool with Lillian and this girl comes over to us and says, "I know your kid" pointing to Charlie.  I'm like, how do you know Charlie...he's like 4.5 and you're a big kid (she was 10).  Her mother was nearby and saw me talking with the girl and she came over to make sure everything was alright.  I said that her daughter knew my son, but I wasn't sure how they knew each other.  Her mom said that her daughter is in Special Ed. and as a treat she gets to visit the preschool class and read stories to them.  Her daughter has Autism.  Ahhh...well that makes perfect sense now!

So, a few minutes later, Katie comes over to see what was going too.  I asked her if she knew the girl and she said yeah.  Then she said that some of the kids at school were mean to her.  She went to say that they play the "M game" and it wasn't very nice.  The game basically is like cooties, and whoever touches her can pass the cooties around.  Katie then tells me that she got tired of them picking at her so she touched M and said Game Over.

You see, Katie understands that kids are different.  She understands that kids who are different are still kids, like she is.  She's at the age, where she is not tolerating mean behavior and is willing to stick up for those who can't.  I'm very proud of my Katie...she did well!  I don't and can't expect her to be everyone's hero, but she really made me proud and is my little hero!

Well, done My Sweets!  Well, Done!

Have you ever been so proud of your kid?  Please share your story!

Disability Talk

The kids and I spent the day at the swimming pool today with some friends. The weather was hot and perfect for pool weather. Lillian had such a great time in the kiddie pool, which I'm assuming her 2.5 hour nap in her stroller and car ride home was a good thing!

But, this post is not about my kids and having fun at the pool. I wanted to talk about someone who I met at the pool. Towards the end of the day, another mom came to the pool with her two kids. I immediately recognized who she and her kids were. Their family sat at the same table as ours during the holiday party for all the families with Special Needs at Travis Air Force Base. We spoke a little and made short introductions. She told me at the time that their son was autistic and I shared that Lillian has Down syndrome.

Well, today was the first time since then that I had seen them. Looking at her son, he looks like a typical 8 year old. But when you see him behave and act out you know that he's not a typical 8 year old. At least, I knew that. She and I spoke some more today and I learned that he also has some mental retardation. And I was OK with it, because Lillian too has mental retardation. But seeing this mom in action made me think of all the time and work she has invested in her son to be in the place that he is in now. The discipline and I'm pretty sure a lot of tears.

I can't imagine that it's easy for her. I mean, raising a child with any type of disability isn't easy. But the part that I was thinking that could be the hardest are the stares from other parents. Those parents and people who don't know her situation like I do. Those people who see this boy, that looks just like their son, daughter, or grandchild, act out and throw fits, yells and runs off. What are they thinking? She said that people just stare, and we both know what they're thinking...they are thinking "Get a grip of your child". When in fact, this is her child and this is what he does.

Lillian's disability if visible. She hasn't thrown a fit out in public yet, but when she does, will people stare because of her disability, because she is throwing a fit, or both? I guess really, who's shoes would you rather be in, mine or hers? Or is it even a fair comparison?

Just some things to ponder about.

Scarry Times are coming

I really hate negative news and I hate to share negative news, but this is bothersome!

I currently live in the state of California, where some major budget cuts are under way.  The state is asking for a $100 million budget cut from the Department of Developmental Disabilities (DDS).   They asked the DDS to recommend ways to cut their budget.  

This is what they came up with:

88% of the cuts primarily impact direct services to consumers and families

6% of the cuts impact families directly via increased fees and responsibilities

4% of the cuts primarily impact Regional Centers

2% of the cuts primarily impact Area Boards

0% of the cuts come from DDS Headquarters

0% of the cuts come from State Developmental Centers

0% of the reduction is offset by generating additional federal fund

Please take note of the 88% cut and compare it to the 0% cut from DDS Headquarters.  

I just can't believe that the DDS is recommending that the majority of their cuts come from direct services to consumers and families!  That means the services Lillian is getting for Developmental and Physical Therapy.

I am truly understanding that the hand that holds the money is the hand that controls our fate.  

If they want to take away what little I'm already receiving, then there should be no reason for those in headquarters to keep their jobs.  Since it's families like me who provide them with the jobs they need in the first place!

The saddest part is this...I am a military wife.  Part of the military family who lives in CA but are not registered voters in the state of California.

So, I'm begging and pleading to all my friends in CA to help protect the services that Lillian is getting.  These services are vital for her development so she may be a productive and active member of our society.  I as her mother can't give her all the tools that she needs to grow and thrive, those tools are taught to me and her by her Development and Physical Therapist!

And for those living out of State, please pay attention to where those cuts are going.  I understand that cuts need to be made, but they should be fair and just!  The cuts here in California are far from it!

Let's take the focus away from Developmental Disabilities and work on Developing Abilities!