Friday, October 28, 2011

Yeah - I said that (sub titled - Missing Supernanny already)

Life has been pretty hectic around here lately. Supernanny is officially on maternity leave and 2 of the 3 kids have been running fevers and puking for the last 2 days. Add in busy times at work, a Down syndrome walk to prepare and fundraise for, Halloween costume getting and piles of laundry and you get a scene like what happened to me this morning.

Our doorbell rang at 9:00 AM. Since Mike took yesterday off to stay home with the sick boys, today was my day. At 9 this morning, I had on an old robe, my hair and teeth were yet to be brushed, yesterday's mascara was all over my face and I was wearing mis-matched holiday socks (different holidays - left was Easter, right was Christmas). I have no idea what possessed me to open the door, but I figured it was probably someone trying to sell me something and I would use my lunatic looking self to scare them away.

It was a woman I had never seen before holding a large file folder and dressed appropriately for a meeting she was obviously at my door to attend. My first thought was she was a new therapist I forgot about hiring, but she wasn't wearing socks or holding toys, so that thought went out the window pretty quickly. I am pretty sure I stared at her for 5 minutes without speaking while I was racking my brain for any hint of a meeting I had set. She introduced herself as Susan, Ella's new developmental case worker with the state and asked if I was ready for our goals meeting. At this point, she had to know I wasn't prepared for our meeting, I wasn't even wearing pants!

I started to stutter a bit, my mind was racing with when I had set this meeting, why I didn't put it in the calendar and if I should let her in just to be polite. I knew that last one wasn't an option, I didn't have any goals on the tip of my tounge to talk about, I wasn't dressed to sit and chat, Mike was upstairs shaving, blissfully unaware of this woman at the door and Ryan was moaning from the couch about dying or being dehydrated or something. So, instead of inviting her in or just apologizing for missing the meeting - The first words out of my mouth to her were -

"Oh, I sent Ella away so we can't meet today"

Imagine, I am dressed as if I either was recovering from an all night bender or am homeless (it was neither, I promise) and I told a CASE WORKER that I had sent my child away so she should just leave. She looked at me horrified and I am pretty sure she said "you sent Ella away?"

Yeah, a little clarification was needed before she called CPS or barged into my home to see what kind of nutcase I was. I launched into a speech about how I hadn't really "sent her away" but my boys were sick and we have our Down syndrome walk tomorrow so I didn't want Ella to get sick because she would then probably be hospitalized so she was staying at her Grandma's. It all makes perfect sense, but when you are standing at your door, looking like hell, mascara and uncombed hair everywhere, a 5 year old with mismatched clothes standing next to you and you are so embarrassed that you are talking way to fast and over sharing details that don't matter, it might just appear like you are a little crazy and could have "sent your kid away".

Instead of leaving it at that and letting her talk, I then I told her the nanny was on maternity leave, told her Reed had a fever and was missing school and missed school yesterday too (I was way over-sharing at this point), I mentioned I was normally dressed by now, but didn't want to because I knew I would be cleaning up puke all day and so I forgot to brush my teeth and well, I just kept talking till I realized I looked and sounded ridiculous.

Her response -

"Well, thank you for calling and rescheduling."

Now, I know at this point she was pissed that I wasted her time, appeared to have sent Ella away and that I don't own face wash. I get it. I set an appointment, forgot about it and was making excuses instead of just apologizing and letting her get on with her day. After she said that though, I didn't know what to say next. I didn't call and reschedule, so obviously she was being sarcastic, but I did want to reschedule, so do I say - "Umm, I didn't but can we now" or do I blow if off and tell her I will call on Monday? Instead of one of these options, I decide to take the much better route and tell her my other son was throwing up and I had to run and would email her to reschedule, I then closed the door a little to quickly. Now, I don't normally get flustered or embarrassed or use my kids to get me out of situations, but when you are standing in an old robe at your door with a woman you don't know and you look like death, I will apparantly say anything to just close the door and move on.. After I closed the door poor Reed was so confused... He told me Ryan wasn't puking and wanted to know why Ella wasn't coming home.

Yeah - Such a great way to start my day....

Since Supernanny left us to have a baby, I have lost a clothes hamper somewhere in the house, dyed Ella's new socks hot pink, realized I have no idea what the kids eat for lunch, noticed I haven't bought toilet paper myself in months and we are now out, forgot about a baseball game and a meeting for Ella, gave Reed diet sprite because I forgot to buy regular sprite and my sick primadonna's just HAVE to have sprite and missed two days of work myself. She has only been gone 4 days.... Odds are when she comes back 6 weeks from now I will have lost one kid at the mall, forgot to buy laundry detergent and not noticed until we are out of clean underwear, made pancakes for lunch one to many time and will have given up on matching clothes or getting the kids to school on time.

Monday, October 24, 2011

Almost Halloween!

Sometimes Down syndrome Awareness Month takes a backseat to other things, like - My love for all things October.

I may have mentioned that I love October, Pumpkin Spice Lattes, fall colors at the cabin, skinny jeans in boots, cool nights outside with the boys and Halloween. The problem is that I am a major procrastinator. Most of October bodes well for procrastinating, but Halloween - not so much. When they meet you wind up spending 100.00 in candy at Walgreens because everywhere else is sold out the hour before trick or treating starts and your kid’s costumes are missing the little touches that make them the cool costumes.

I swore on September 15th that this year would be different. I would buy the candy the minute it hit the shelves at Target and the kids costumes would be kick ass, pre-planned homemade marvels that would make the other moms sweat with jealousy (you can still sweat in Arizona in October). Well, the candy is bought, but the costumes, umm, I don't think any neighborhood moms need to lose sleep over our homemade marvels quite yet... Ryan wants to be a Zombie and Reed wants to be Frankenstein. Not hard, you think? Even when I don't procrastinate, I still lack the creative gene that would make costume making fun and / or easy. As the days tick MUCH closer to Halloween, I am thinking that we might have another Target Superhero year coming up. I can't get the screws to stick to Reed's neck for the full Frankenstein effect and I have never actually seen a Zombie but Google seems to have every range of Zombie you can think of, from Referee Zombie to Princess Zombie, anything can be a Zombie and this just complicates matters. Does he be a real estate zombie as an ode to mom and dad or do we go high class and make him the doctor zombie? So many options, even he doesn’t know what to be.

At some point in the last 24 hours, I realized I was so caught up in making the boys costumes (that was a total lie, I am more caught up in googling what I can buy to make it look like I made their costumes) that I forgot Ella has no costume. Crap. What to make the adorable little girl. Mike likes pumpkin, Super nanny likes Goth Cheerleader (she's really pregnant, we have to cut her some slack) and I like parrot Ella (she has a really good squawking noise that would go perfect..). No one can agree. Ella doesn't appear to have any interest in anything that uses her head as an apparatus to hold a beak or stem, so Goth Cheerleader would be the front runner, but I can see her Grandma's refusing to take her picture and blaming me for lack of quality Halloween 2011 memories, so all 3 of those ideas are out. I have no quality ideas, I have less than a week to go and my vision of being the Martha Stewart of October has firmly gone out the window. Again. Ella is going to end up being the darn cow costume Target has for sale each year. I can feel it...

What have I been doing with my time since I am not sewing and painting costumes? I have spent a considerable amount of time learning how to infuse cupcakes with alcohol to make the adult Halloween much better. Crafting Zombie costumes only serves a purpose once a year, but making margarita cupcakes is a year round useful skill that can make you friends who can sew zombie costumes. Just saying... Plus, if I run out of overly marked up candy, I can peddle the cupcakes to the adults who come to the door pretending that I don’t notice they are 45 and holding a pillow case saying trick or treat for the 3 tootsie rolls I am about to bestow upon them (this happens, and it is weird and I like to tell them no, but Mike gets mad, so they always get 3 tootsie rolls, no more, no less).

So, this is how we are celebrating Halloween. Target costumes, over priced candy and Kahlua cupcakes. A wonderful trio of procrastination and perfection that is repeated each year, no matter what I say in September.

Friday, October 21, 2011

A lesson learned

We recently visited an aquarium while on vacation.  Aquariums aren't Ella's cup of tea.  She enjoys activities that involve yelling and walking and throwing toys at her brothers. She doesn't enjoy activities that involve sitting in a stroller and looking at fish for 3 hours straight (much unlike her dad and brothers who can stare at fish for hours on end).
Ella letting me know fish bore her..
I was able to find a play area in the aquarium. It had soft climbing toys in the shapes of Nemo and pirate ships, a mini slide perfect for Ella sized little ones and other little kids to hang out with. She was a happy baby again.

When I entered the play area there were 6  little ones on a play date with their moms. The kids were 1. typical developing kids 2. dressed as if the baby gap had just finished a fashion show and these were their models 3. running around like crazy 4. talking 5. younger than Ella.

Now, these 5 things might not seem like a big deal to most people but to me, they set off my "Down syndrome Mommy radar".  Well - maybe not #2, that set off my "Stop shopping at target and dress this adorable kid cuter radar" - but the other things made me sad - a right away sad. And then, feeling sad made me feel angry because Ella is a perfectly fine little girl developing along a normal scale for her so why the hell am I sad that she isn't like these kids?  I tried to brush it off and enjoy that Ella finally wasn't screaming and Mike got to look at his spotted puffer fish in peace, but then - this happened.

Mom #1 to me "How old is your daughter?"  Me - after a way to long pause that might have made it appear that I recently kidnapped her and don't really know her birth date - "Umm she is (insert mumble) 20 months." Mom #1 - "Oh, well, Oh, she's cute for her age".  Me - "Yeah, she sure is."

Mom #1 then leaves the pirate ship Ella had overtaken and went back to her mommy friends.  Mom #2 then comes over, tells me how cute Ella is and then tells me her 30 lb talking, running, apparently able to add and subtract and keep a hat on his head child is also 20 months. She asked when Ella was born and if we were from Charleston.  She kept staring at Ella, she kept trying to get her son to interact with her.

Now - this is where any other mom would probably have said - She was born on February 16th AND she has Down syndrome. Thus eliminating all questions from the mommy group as to why my daughter didn't stack up to their 20 month olds.

I didn't say it. I don't know why. I just said her birthday was in February and we were from Phoenix. I didn't leave the play area, but I did start to tear up.  I am pretty sure the mom thought I was crazy. She went away, Ella kept playing and all was fine, but I wasn't.

I am in no way ashamed that Ella has Down syndrome. I am not afraid to tell people, I am not afraid to talk about it or show off the "markers" that make her - her.  I seek out others who have kids with DS to talk to, to relate to, to learn from, but when it comes to moms of kids her age that don't have DS. I just don't feel comfortable around them.

I should have told her Ella had Down syndrome, I should of used it as a learning experience for both the moms group and me. I should have done a million things instead of feeling sad and then angry, but I didn't. I didn't want to tell this mom. I didn't want to discount Ella to them. I didn't want Ella to have a reason to be different. I wanted her to just be 20 months old and that's it..

Now, this is irrational at best, obviously the moms knew there was something that made her different.  Telling them isn't discounting Ella, it is being honest and upfront and proud of my daughter. No matter what Ella is - she would still be 20 months old, so telling them wouldn't of changed that, it would of just clarified things.  I just didn't want them to pity her or and this sounds horrible - be thankful their kids don't have Down syndrome.  I didn't want the 3 moms to go back to their huddle and say - "I am so glad that isn't us.." Because if they really knew us and Ella they wouldn't say that but they don't know us so maybe they would say it.

I lost an opportunity to share about Down syndrome and Ella. I let my own insecurities get in the way. This was the first time I had really been in this situation and it was uncomfortable.  I was caught up in watching the other kids walk and talk and run and use straws and I forgot that my little girl is just as amazing in her own ways and that those other little kids and their moms might have their own struggles and I just need to be me and let Ella be Ella and all will be OK..

Next time we are out and this happens, I won't react the same way.  It's my promise to Ella.

Friday, October 14, 2011

Hawaii has charts - Did you know that?

When Ella first started her therapies, I would live for the quarterly assessments. The meetings where her therapists would pull out the Hawaii charts and measure Ella's progress against typical developmental milestones.  Her therapists are great - wait, her Physical Therapist is great -  she wouldn't dwell on the fact that Ella wasn't at a typical developmental milestone, she would just proclaim Ella is doing AMAZING and tell me how hard she works and what our next goals will be.

That wasn't enough for me, I wanted to see this chart and see where Ella was on it.  Her PT wasn't real keen on focusing on the chart, so she would usually make some excuse about being late to her next session and run away from me.  Little did she know that I am a Google master and with a little help from my friend Erin we had those Hawaii charts in front of us in no time.

Once I had the chart and plotted out where Ella was, I learned that at 12 months of age, she was acting more like a 6 month old.  She couldn't say momma or dada, she couldn't stand yet and she was no where near waving goodbye. This flow chart confirmed all the worrying I had been staying up late doing - Ella was behind.

I fretted over this flow chart and Ella's lack of refining her pincher grasp or batting a ball for a good week.  I carried it with me back and forth to work and when Mike wasn't looking I would pull it out to map her progress again, thinking maybe I missed something before.  I was just so sad that it was official - Ella wasn't like her peers - Hawaii said so.

After a week of this, Ella stood - with the couch as support - but she was able to bear weight on her legs and stand. Just like any other kid. I was so excited. I facebooked the pictures, I called everyone I knew, I clapped so loud Ella got scared and fell down.  But SHE COULD STAND.  At that moment I forgot all about the chart and when it should of happened and only cared that it DID happen. The next day I took my Hawaii chart out of its hiding spot and threw it away.  Screw Hawaii charts. My baby will do things when she wants and plus the chart doesn't account for stubborn.

Since that day, when people ask me where Ella is compared to other typical kids her age (and this seems to be a favorite question) I tell them I don't know. Because I don't.  Sure, I had 2 kids before her and should maybe remember when you are supposed to do things, but honestly, I don't remember. I mean my mind only has room for so much, plus  Ella is on her own timeline. The more I push her the more she resists and comparing her to these charts isn't going to get us to her next milestone faster, it is just going to cause my ulcer to flare up. I let her explore and learn in her own way. Maybe the chart says you cruise on furniture before you walk, but Ella didn't want to - does this get her to skip ahead on the chart or counted down for missing a milestone? It just doesn't matter because in the end she still walked...  Sure I supplement her play time with PT and OT goals and I use flashcards to help her learn objects and I sign with her but if you were to ask me what she should be doing right now, I don't spout off the list of 20 things a 20 month old can do and say she can't do them, I simply say "Ella does everything you see her doing and working on lots of other things".

Let me close with this: While I don't compare Ella to the developmental charts you can find on Babycenter or apparently in Hawaii, I still have a hard time when we are around other kids her age not looking at them and comparing.  I have a blog post for tomorrow about a situation that just happened when we were on vacation.  I have learned to put down the charts, but learning to turn a blind eye to other littles her age is harder. Much harder.

Here is a picture of Ella when she first stood:

And a picture of Ella now, standing and walking at the beach:

P.S. Please take a minute to visit the tab at the top of the blog that says Ella's Entourage and read about the Step up for Down syndrome walk and how we need your help to make her team the #1 fundraiser this year.  If she is #1, she gets to ride in a buggy at the parade as "grand marshall" of the DS Network float. I am already practicing her wave so we need your help to make sure she gets to use it.

Saturday, October 1, 2011

Welcome to October

I love October. It has always been my favorite month.  The weather is finally starting to get cool, my anniversary happens (that's in here just as a reminder for Mike), the kids are on break and Halloween is by far my favorite holiday. Before I had Ella, I had no idea October was also Down syndrome Awareness Month.

Most people know that October is Breast Cancer Awareness Month. If I was in charge of picking the month for Down syndrome Awareness, even though I love October, I am not sure I would want to go up against the pink ribbons. I might have picked January, I mean, other than my birthday nothing happens in January, or what about poor April, sometimes even Easter skips it over, I am sure it would love a little Down syndrome Awareness.  March makes sense too because it is the 3rd month, but hey, we are stuck with October so we have to make the best of it.  

For October, I am going to do one thing each day to raise awareness of Down syndrome. I am going to blog, I am going to stop the person at the grocery store who gives Ella a weird glance and explain to them why she is so adorable. I am going to raise 5000.00 more dollars for her walk, I am going to be out there in my community letting everyone know Down syndrome is not weird, or bad or something that makes a life not worth living. 

I know my friends who have kids with Down syndrome are going to do the same.  We are a small but powerful army marching against a nation that values some unrealistic idea of perfection over loving what you are given. 

We are up against a lot in October - Cooler weather, Breast Cancer Awareness, Halloween, my Anniversary (sorry, just wanted one more reminder for Mike) but if we all speak up we can be heard. We all need to tell our stories - show the world that our kids are "more alike than different" and that we are a force to be reckoned with. 

Today - for day one of Down syndrome Awareness Month - I am going to be in Payson, AZ - without my adorable Ella.  Every minute I spend without her I realize I never want to be away from her.  When she was born I remember thinking I would never want to take her anywhere and now when I am forced to be away from her, there is this giant hole in my heart that misses my little Ella Bella like crazy.  That little girl makes every single minute of my life better.  So, while I might be starting my awareness journey away from her, it only makes me more aware of how my life is better with her around.

I will close with my shameless plug to visit the link at the top of the blog that says Ella's Entourage and donate to her Step up for Down syndrome Team.  I set a goal of 10K for her team, we are almost 1/2 way there and have 26 days to make it the rest of the way. I set a big goal because she is worth it. Every kid with Down syndrome is worth it.  This money goes to so many amazing things to help support families, kids and provide more awareness in the community.  Please donate if you can.

Tomorrow is an update on Ella. She is going to be 20 months in October and I can't believe how big she is now!