Monday, March 30, 2009

the Talking Hands

Lauren is 'verbal'! It is so exciting and fun. She may not have a great grasp on the English language but she has 10 good, solid baby signs that she is using. This is huge to us because Lauren has a hearing impairment.

She is at an age where she is quickly and proficiently picking up new signs. I think I just need to learn some new ones so that I can teach them to her. There are lots of kids, with and without Ds who know a ton more signs than she does, but LoLo is doing great!

Right now, at 20 months, she can sign


She also says Dada, Ada and Duck. I'm so proud of her. I cannot tell you how worried i've been about her speech development - the Down syndrome coupled with a hearing loss does not equal a great prognosis. But, she is showing so much progress, enthusiasm and aptitude that I just had to write about it.

Friday, March 27, 2009

Advocacy anyone? Everyone?

"Advocacy: The act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support."

Everyone is an advocate for something, right? Either you are your own advocate or you advocate on behalf of someone else. You want your child to sit out of gym when they are nursing a sprained wrist, you want your boss to let you work through lunch so that you can leave work early, you ask that your employee be given a chance at a new position, you want your grocery store to start carrying organic Cheetohs.

Being an advocate comes with the role of being a human being with needs. When one is a parent, we advocate for our children in one way or another --- and some need it more than others.

Right now i'm in the middle of advocating for my oldest daughter, Ada. She is 23 years old and ready for a change. She's always lived at home but I knew that someday she would want to move out or we would realize that it would be better for her to live some where else.

We found a somewhere else: it was dangled before us like a dazzling, beautiful carrot. Then, just as quickly it was snatched away.

Ada has autism and depression (possibly bi-polar disorder; I'm not completely sold on that diagnosis anymore). She is incredibly sweet, gentle and fun (except for when she's not) and can be quite close- minded (!) about trying new things.

We broached the subject of a Group Home for Ada with her case manager and were told of one with an opening. We visited the home, loved it, loved the staff and were told how much they would love to have Ada join them. But, er, no: "sorry we shouldn't have told you about this".

According to the powers that be, we should never have been considered for this placement because Ada isn't 'medically fragile'. Have they given me a satisfactory definition of this yet? No, they haven't.

Mind you, I'm not ready to go to the mattresses for this yet, but i am in the process of getting to the bottom of it. I've had one very long conversation with a mental health supervisor and two lesser conversations with Ada's case manager. They say it's not off the table yet.

It's a learning process and I know that something good will come out of this experience; perhaps that that truly isn't the right place for my daughter. But, if it is, I'm going to do whatever it takes to get her there. Ada does not keep windows of opportunity open for very long.

For now, we're enjoying her good mood and happy temperament and hope that it lasts long enough to find the right fit for her. In the meantime, the advocacy continues and if we can get Organic Velveeta why not a great place for my adult daughter to live?

Sunday, March 15, 2009

Christmas everyday....why not?

Why can't it be Christmas everyday? Why can't our kids go to bed with so much excited giddiness that the only thing that helps them fall asleep is pure exhaustion from the wonder of it all? Why can't we decorate the house and create special memories and give gifts just because?

this past Christmas was especially special as Gabe really grabbed onto the spirit of the holidays: he loves the excitement, the surprise, the spontaneity and the hope. But, Christmas ends and what happens? Suddenly, the snow is a bummer and an obstacle, the crowded stores seem annoying and money is way too tight to find any wiggle room for that one last gift.

Why can't we enjoy the spirit of Christmas year round? Why can't we take the same delight in our children as we do when they are anticipating Santa? I don't know.

I know that my children love attention and never seem to get enough of it and that tomorrow, as in every other day, i'm going to do my best to give them what they need. It's never about the money or the expense, it's always about the love.

Don't ever forget to love your child.

Monday, March 9, 2009

Lauren - at daycare

I'll start with the pictures first because I love them.
A photographer brought his chest of dress-up clothes and "old-timey" props for the photo shop.

As you can see, Lauren enjoyed it.

Did I fall for the already mounted and framed 10X13 of Lauren that was displayed at the daycare center.
Well, yah. As if.

Lauren goes to a daycare 15-20 hours a week while I complete my internship in school counseling. I was a little unsure about sending her to any daycare, particularly a commercial one, but Little House of Hugs came highly recommended.
And, I can see why.

The care providers are so professional, caring and flexible. I think that they treat Lauren like they would treat their own. She has bonded with them and they with her. They always make a fuss over her and put up with my ever-changing schedule. Heck, they don't even mind using the cotton diapers we prefer!

They keep the kids busy and active (they have an indoor gym with lots of thing to climb on) and keep them to a good, strict schedule. I feel so fortunate to have a place like this. It's not always easy saying goodbye to her for a few hours but I sure do appreciate knowing that she is safe, well-cared for, stimulated and happy.

Thursday, March 5, 2009


Ada is....
my 23 year old daughter. She is very unique, extremely challenging and sometimes frustrating. When Ada was born something special, some incalculable shifting of the moon and the stars and planets occurred that resulted in a being that would bring something to the world that noone else ever could. Something happened to make her into the interesting, amazing little person she was, is and I hope she will be again.

When Ada was 7 months old we discovered after much trial and error that she had a rare growth disorder known as Russell-Silver syndrome. It is a form of dwarfism that gives its few members unique facial features, short stature, a petite build and a whole array of medical issues, though Ada does not have hardly any of them. This was a difficult thing to hear but I had already accepted her and loved her so fiercely that there was no way I would let anything or any one stand in her way.

To fast forward this whole story so that I can get to my point, Ada was later diagnosed with Autism and most recently with Bipolar Disorder (along with 84% of the rest of the world...ha ha).

So what does this = ?

Well, take a person who has anxiety, very little insight into her own emotions and very little skill at communicating her feelings and add a dose of mental illness that is caused by a bio-chemical imbalance in the part of her brain that regulates emotions. What do you get???????

A ridiculous amount of stress....that is what. Seriously. God has a great sense of humor.

I don't know if I should laugh or cry. Lately it's been a lot of the later. I'm so sad about Ada. I have so little hope right now. She says she wants to try new things so I get her signed up...things like Special Olympics gymnastics and a girls weekend with some of her school mates and respite provider. She says she'll do these things but when the time come to do them...she withdraws, digs in her heels and refuses. And, once again, my hopes are dashed. I want her to try new things: I want her to find her niche in life and to find something that makes her happy.

Tonight I attended the first of 10 weekly NAMI meetings and cried through the whole thing. I need help and I need support and I know that this will help me understand my wonderful, unique and challenging daughter better.

Tomorrow's a new day and perhaps Ada will decide that going to a hotel, away from her siblings and the daily routine of our home life will be appealing. Perhaps she willl...but if she doesn't we'll push on. It helps to write it out - it doesn't seem as overwhelming.

Tuesday, March 3, 2009

"Just a Mom"

Just tonight I was reminded that being a Mom wasn't really a job, wasn't really important, wasn't a good enough reason to complain about stress or lack of time or the inability to complete things.

Who implied these things? Why, a single, childless woman of course! I won't go into the details of the discourse: let me just say that I was
disappointed at her ignorance. Sure she works FT and is in school...but when she leaves school or work, her time is HER OWN - something that I haven't experienced for pretty much 23 years now.

I don't blame my lack of time on anyone but myself. I chose to become a mother and a graduate student and a wife. I also do grief counseling, coach a soccer team and get 4 kids to 4 different places while I complete my internship at the High school. But why is it that I can empathize with her but she cannot empathize with me and instead, throws out comments like...'but you don't work"?

Anyway, I think that the world has come a long way in accepting that Parenting is Hard Work. Being a good parent takes a lot of energy. Heck, being a mediocre parent takes some energy. The only thing I don't have to show for it at the end of the week is a paycheck. I think that it is accepted that a lot of Mothers have to go to work and cannot afford to stay at home all day with their children and that those who do are extremely fortunate and blessed....but that does not mean that we are paving the road to easy street. Ever spend a day with an 18 month old and a 6 year old? It's not always pretty.

Anyway, again. I really wish that people who are not parents would stop assuming that they are working so much harder than those of us that are or that their parenting advice would be so much better than ours or that they would have perfectly behaved kids...if they actually had any.

that's all.

Gabe, Curtis and Dav

Future Drummer?

Future Drummer?