Wednesday, September 30, 2009

Developmental Playgroup is Back


This month, after 6 weeks off, Sophie's developmental playgroup started back up again. We love DSC and Sophie gets as much out of this group as her individual therapies. Helena usually hangs at home with Mark, but since he was busy this morning being honored by the university for excellence in teaching (yes, I'm proud), baby sis came along.
We have one returning group leader, Mary and a new group leader, Deana this year. We knew Deana already as she filled in a few times last year. They are both wonderful. We've got just 2 returning friends and a bunch of new ones. Group is just as much for the parents as the kids and making new connections is good. Also with us this year is our new friend Miss H, who also has Down syndrome.

To continue the recent theme, Sophie blew me away again. She did lots of walking today. I managed to capture on video the elusive phone conversation that she's stubbornly refused to do in front of any of her therapists. The room was noisy, so listen closely as Soph says 'hello' into the phone.
video
During art time she used actual paint vs. food (pudding) without trying to munch the roller (a 1st). She actually painted, chattered and laughed the whole time. She did a few hand movements that go with our snack time song, 'fishy in the water' (another 1st)

She cheered as we arrived and was sad to leave. Such a big girl.

Tuesday, September 29, 2009

Autumn Cuties

After their baths with new Halloween jammies.
So Cute It's Scary


Mums the Word (alternate title, Give Me That Paci)

Sunday, September 27, 2009

H1N1 Vaccine Debate


This has been on my mind for a while now. I'm not so sure about the H1N1 vaccine. I'm not yet convinced that the risks outweigh the possible benefits. Risks that may be unknown at this time or neurological. It's not that I will refuse to do all I can to help protect my family from getting ill, but we're talking about a flu versus a virus that kills most of the people who become infected. Yes, I know people do die from the flu as well, especially those who are higher risk. H1N1 is rampant and Mark had 7 students confirmed to have it in the first couple of weeks this semester. The university sent out an email that 1 in 6 will have it by November.

I'd like to hear your thoughts on this. There are doctors who say that we should vaccinate and others who won't vaccinate their own kids. I had a discussion with our ped and he suggested that I give it to the kids. I asked about the regular flu shot and how much time I should wait in between the two different vaccinations. He said about 30 days, but I got the feeling it was his answer and not necessarily protocol. How about how many H1N1 shots will be needed? Some say we would need 2 shots to be effective. Others say just one is enough.

On the sidebar of this blog is a poll. Will you vaccinate your kids with the H1N1 vaccine? Please take a moment to take the poll and leave a comment. Not in the poll (but you can leave a comment) will YOU get the vaccine? Be nice. This is intended to be an honest discussion and not a mud slinging contest. Nasty comments will be deleted.

Let's hear it.

Wednesday, September 23, 2009

The Sophinator

It just keeps happening.

At the grocery store this morning, the clerk handed us our groceries and Sophie said, 'thank you, bye bye.' She's said both phrases for a while. Never together in this more complex conversation style.

We came home for lunch. She made me wait as she had to dance first to a song on Noggin. Hands in the air, swaying, smiling, clapping, saying 'yay!' when it was over.

Then (you could have knocked me over with a feather - and not because as of today my weight is now in the healthy category for my BMI, woot-woot!) she grabbed her straw cup to take a drink. She accidentally pulled the straw out too far and didn't get any juice. I stood to help her. Without skipping a beat, she looked at the cup, used her fine motor skills and understanding of cause and effect and pushed the straw back into the cup. She took a drink, and I nearly fainted.

If you're thinking, 'so what?' then you probably haven't had the PRIVILEGE to be allowed to watch someone with special needs learn and work hard for every milestone. If that's the case, stick around and we'll adopt you.

Thank you Sophie for teaching me to slow down and appreciate every little accomplishment as they come. Because of you our lives will be filled with victories and celebrations.

Somethin's Happenin Here

BREAKING NEWS:

Two weekends ago we went back to my hometown for their Buddy Walk. While we were there, Sophie began walking around quite a bit. Then she got really sick and things slowed down. Now that she's feeling better, she's walking a ton again. I have a feeling that she's going to be blowing me down, just as she did this morning.

Sophie picked up her jack-o-lantern (with legs, pictured below) and began role play or make believe play. She was making it walk and then fall down. She was saying walk (sounds like waah, waah) and then giggling when it fell down. She's played with her dolls before, feeding them with a spoon and such. This was 100% unprompted, 100% Sophie's imagination.

Tuesday, September 22, 2009

Cause for Rejoicing

I received a letter today from the awesome Developmental Services Center that we will again receive Respite Services October - December! My 1st call placed was to our sitter and I already have her lined up for October. This is truly a God send. Woo-hoo!!!

Don't forget, you can still buy raffle tickets to win $20,000 in cash from DSC. Tickets are $20.
GRAND PRIZE $20,000
2ND PRIZE $500
3RD PRIZE $500
4TH PRIZE $500

PAYDAY DRAWINGS: On September 11th and 25th, October 9th and 23rd one ticket will be drawn and the winner will receive $100 CASH AND the winner's ticket will be put back in the running for the $20,000 Grand Prize - 4TH Prize drawings!!!

The final drawing will be held on Friday October 23rd at Juniper's at the Crossing and everyone is welcome!

  1. To purchase with a credit card click here. When you click to "buy now" simply fill out the form and submit. A DSC representative will contact you to complete your credit card sale.
  2. Write a check to Developmental Services Center (DSC) and mail it at DSC/CASH RAFFLE, 1304 West Bradley Ave. Champaign, IL 61821, or
  3. pay cash

Winner need not be present to win. All proceeds benefit children and adults with developmental disabilities.

And now for a random cute photo of Soph.

Monday, September 21, 2009

Viral Rash


(click to enlarge)

This is at least the 2nd time Sophie has been sick and had a rash. In both cases (last Spring I think was the last time) the rash developed after 3 - 4 days of fever. The fever is gone, but symptoms of a cold remain (runny nose, low energy, VERY whiny and clingy, etc.). She doesn't sleep well and eats very little. Then this rash breaks out. She lost over 1.5 lbs last week. Her ped says it's just a viral rash and mentioned the coxsackie virus, but from what I see, it looks more like Roseola. Plus the rash happens after the fever breaks. So come on you wise parents. Have you dealt with this? Do any of your kids with Ds see this more often as neither Alexander or Helena (knock on wood) have had this? Her skin is much clearer, she's less snotty and eating again today. We're back to better sleeping and higher energy as well.

Thursday, September 17, 2009

Sisters

These girls make my heart swell. Sophie and Helena are in love with each other and it is so fun to watch. Just this morning I was holding Helena as Sophie stood in front of us. Sophie bends down and says "peek a boo" and pops up. Seriously? Yes, seriously. She laughs and pats the baby. She kisses her with a loud smack and says "oooohhhhh." Then she giggles some more and says "baby." Helena responds with giggles and coos. They are having a conversation. They love each other. Seriously.

Friday, September 4, 2009

Time


To every thing there is a season, and a time to every purpose under heaven.
Today we released a Monarch butterfly. Alexander cared for it so tenderly. He fed it as a caterpillar, talked to it, and watched excitedly when the cocoon formed in the habitat. In the early hours before we awoke, it decided it was time to reveal itself as a beautiful butterfly. This afternoon, we set it free just when I needed a reminder that we all have our own time and pace. Camera ready, we opened the habitat but the Monarch didn't move. Alexander said goodbye, and yet it stayed still. Eventually we got on with our day. Only after we had walked away and were no longer invading it's space did this Monarch take flight. We were there, camera not ready, when we caught sight of it as it fluttered up and off to the neighbor's garden.
Sophie's yearly IFSP is coming up in a few weeks. Once again it's time for evaluations. Mark and I had already been talking about our observations that Sophie's rate of development, her pace has slowed significantly in the past 6 months. We're not saying she hasn't made gains, because she has. I've shared these thoughts with each of her therapists. They have reminded me that as a child is working hard on PT, that often the other skills get put on hold. She is currently climbing on everything and walks (or shuffles, meaning a shift of her weight in her hips vs. lifting her knees) a little everyday, but her preferred method of getting around is still crawling. She could set world speed records.

Still, for me as it is for many parents, the time for evaluations is difficult as we wrestle with so many emotions, truths and perceptions. It is a time for grieving all over again. I read over our goals for this 6 month period and realize many have not been met. Is it my fault? Have we not worked with her enough? Too much? Is it about my expectations and issues of acceptance or has her progress really slowed? Why? What can we do? How do I handle this feeling of sadness when other's would give their left arm for their own child with special needs to do what Sophie can do. Guilt over that is not helpful either as it discounts our feelings, which are just as valid.

Having Alexander has been so good for Sophie. She's had a sibling to imitate and follow around and I know that he has helped her development significantly. Now that Helena is here, I have to say, I was not truly prepared for how I would feel as I watched her develop and grow. To say I don't make comparisons is a lie. I don't want to. Most often it's just that Helena is constantly shocking me at what she is already able to do. It seems so fast as Sophie's pace has become my 'norm.' This too is cause for grieving.

This morning Sophie had her PT eval. After the test and hearing the numbers and age ranges for where she is at, I told her therapist that she's still Sophie. She's still the same little girl that she was 60 minutes ago. I said it not for the PT's benefit, but more as a spoken reminder to myself. The numbers were just where I suspected, so really it did not come as a surprise. And yes, her rate of growth has slowed. It was helpful that her PT read over the notes section of the last eval because I was reminded of how much she has accomplished that the numbers do not reflect.

Sophie has her own time. She has her own pace and that pace can and will slow down or speed up as she grows and learns. I am grateful for her EI therapies despite the negatives that go with it. Lately I've read as other parents struggle with the question of whether or not therapies actually benefit our children or if they would learn their skills anyway and in their own time. Is it worth the time it takes to do therapy? Is it worth being under the microscope at least every 6 months as our children are evaluated and scored? Is it worth the guilt we feel when we know we haven't done enough therapy on our own during the week or the frustration for having to work in too much in our daily lives instead of just living?

For me, the answer is unequivocally, yes. Yes, yes, yes. The research is there. Our evidence, albeit anecdotal, is there. Besides, if we only do therapy for 45-60 minutes per session, but don't work it into our everyday lives, then we're not really getting therapy. Even if I'm just hedging my bets and hoping that EI will make a difference, well, Sophie is worth it. She has an amazing team and I am very appreciative of all they do for her. They have taught us so many ways to help her and meet her where she is at. Things I would not have thought of on my own. They have also held me up as her mom as they grieved and cheered with me. They are invaluable.

So, as I stumble through this time of evaluations, I need to remember our mantra. She's still Sophie. She's not a series of numbers. She is not a diagnosis. She has her own time, her own pace. And she is a wonder to behold.

video

Wednesday, September 2, 2009

Wordless Wednesday, Too (2) Cute Sisters




Preschool

Ahh back to preschool. Last year Alexander had so much fun. In the spring he had his own special day, which was of course, all about trains.

The staff built him a train out of boxes that he loved!

On the last day, they had a beach party and invited the families.

One last storey time and we said our goodbyes for the summer.


School began again on Monday. Last year he went MWF but this year we think a full week is in order. It's hard to believe that summer is gone. He really shot up over the past few months and is looking more and more like a big boy.

video