Quailday: The Toddler Diaries

 

As I mentioned last week one of my biggest smiles of the day comes every afternoon when I get a tiny peek into the Quail’s day. For posterity’s sake, I’m going to start keeping a collection of her days as told to me by the Quail’s beloved Miss Mattie, Miss Jodie, Miss Ashleigh and all our other favorite teachers. I hope it makes everyone who loves her smile as wide as it makes me! The picture shown here is the Quail with her EI, Jodie working on some squishy skills.

From September school days:

9/7/10: “She was so great today!  She came out on the playground with everyone and was so preoccupied with playing that she didn’t care if I was there or not at all.  Once we came inside, she just played on the green carpet with everyone and was crawling around and babbling with everybody.  She was much less shy today than last week.  After that, it was time for their snack and it was about time for her milk so I sat her down in a toddler seat at the table and she drank milk and thickener out of her cup with everyone.  After milk, they were getting food-food and I wasn’t sure what she eating now.  Ms. Patti said she usually gets baby food at around 12 so Miss Ashleigh went to grab her a couple saltine crackers so she could eat with the big kids.  While she was gone a couple kids at her table got their food.  She was getting impatient and stood straight up out of her chair.  I don’t think she even realized she was standing.  She was up without any help for a good 20 seconds and then put her hands down on the table for support, but stayed up for a couple minutes while Miss Ashleigh got her crackers.  She also signed “eat” and “please” to get them.  I’m not sure that she even really needs me with her anymore, she’s getting much more confident and comfortable with it. ”  

After requesting further clarification on the standing since it was the first time noted by anyone:

“She lowered her feet down and just stood right up.  The back of her legs were up against the chair, but other than that she was standing on her own until she put her hands down on the table.  I didn’t even know she could do that.  I’ve seen her try to pull herself up from sitting on the ground, but never lower herself down from something. ”

And then the next week:

9/15/10: “She is so motivated to stand!  When I first got there, I was going to bring her right over to the toddler room.  Instead she grabbed onto my fingers and (legs tucked to the side) stood right up with me pulling a bit.  Unfortunately, she lost her grip on my fingers and fell backwards.  She was a little annoyed with me for that, but quickly forgot about it.  Next, she crawled over to the red toy bucket and tried to pull herself up to stand (again with her legs perfectly placed).  Even though she never quite got it, she kept trying.  After about five tries I helped boost her up and she picked the baby toy out of the bucket and gave it hugs and kisses.  Then I got her shoes out to go outside with the toddlers and I said, “Quail, Can I see your foot so I can put your shoe on?”  and she lifted her foot hi in the air for me.  We went next door and spent about 5 minutes outside and then about another 15 in the toddler room.  She played with block with them and I tried to work on some two-step commands with her “Quail, put the block down.  Quail, stack the block.”  She was pretty distracted though.  She also said “baby” in reaction to another toddler playing with a baby doll next to her.  She did pretty good in there, but still looks over for support when she gets overwhelmed.  Then, we cam back to Ms.Patti’s room.  I tried to work on her wheelbarrow excersize, but she wasn’t feeling it today.  We did some crawling over my leg instead.”

And then a few days later:

9/20/10: “She pulled herself up to standing without any help today! When I first got there, she crawled over to me to say hi, then she crawled over to the red toy bucket and just pulled herself up like she’s done it 100 times.  She tried again a minute later and didn’t quite get it, but she was close.  Then we went out to the playground with the toddlers and she went on the swings and down the slide (with a little help) and got to say hi to Zuzu on the other side of the fence. We spent about 20 minutes outside with them and then came back to Ms. Patti’s room.  I had her sit up on the block and we read a book twice.  She signed “book” when I asked her to say book.  Then I worked on having her reach for puzzle pieces and tried to get her to put them in the puzzle.  She was more interested in hitting them together though.  I also tried to work on two-step commands with the cups.  “Put the cup down. Stack the cup” She stacked one cup on top of another once, but wouldn’t put the first block down when asked.  Then, I had her sitting up on the big ball and moved her from side to side and front to back.  She did really well with this and didn’t need that much support from me.  Next, I had her crawl over my leg for puffs.  She did this about 5 times and signed “please” for puffs.  Then, I tried the wheelbarrow with her with help from Ms. Patti distracting her with puffs.  She stayed up for about 15 seconds 3 times.

Mommaday: Buddy Walk

Buddy Walk snuck up on this year and we were happy to be able to go at the last minute after being fairly certain we weren’t going to be able to attend either of our local ones. Fortunately our Family Connections friend Kim, who also happened to be the top fundraiser this year was extremely persistent and convinced us to sneak it into our schedule. She even managed to get the Quail on the T-shirt as a participant as well. Here are a few shots from the beautiful day. It makes my heart swell to see all of the folks gather and celebrate. I still am a bit intimidated by the event though and haven’t managed to organize the Quail’s own team yet. I’m not quite so sure what makes me feel shy about asking people to join us. When I see everyone else’s entourage I inevitably wish I had been braver. One of these years. In the meantime…

Gratitude Journal: Gratitude for services

Not so very long ago, it was much harder to raise your child that has special needs in your home. I’m thankful every day that our little family was created in the here and now. Here are just a few of the things we are thankful for.

1. Early Intervention

2. Our pediatrician

3. Our pediatric cardiologist

4. Our pediatric surgeon

5. Our Children’s Hospital

6. Our children’s hospital that will do the Quail’s OHS if it ends up being needed

7. Our OT and PT

8. Our feeding specialist

9. Our geneticist

10. Our Down syndrome Family Alliance

11. Our Family Connection

12. Our preschool

13. Our speech therapist

14. The Babycenter Down syndrome boards

15. Downsed International

16. Advocates like Dave Hingsberger that make me think

17. Friends like Pudge & Zippy that tickle our funny bones

18. Places like The Waisman Center that educated me and do so much to further our understanding of disability

18. Friends like Down syndrome New Mama  & Einstein Syndrome who help us get to know each other and understand our little ones.

19. Photographers like ConnyBethany that help make it even easier to see the beauty in what for some is difficult.

20. Publications from Woodbine House that help a new mom & dad know exactly what to do when, to help their little one with a little extra, know every last little thing they should!

21.  American Association on Intellectual and Developmental Disabilities

22. The Arc

 23. Disability Studies, Temple U 

24.  BLOOM

25. DownSyndrome

26. Down syndrome: Health Issues

27.  Down Syndrome for New Parents

28. National Association for Down syndrome

29. Buddy Walk

30.  Special Olympics

31.  R-Word,

32.  The National Down syndrome Congress

33.  National Down Syndrome Society

34.  NDSS National Policy Center

35.  Patricia Bauer

36.  Oz Squad

37.  Reece’s Rainbow

38.  The Recreation Council of Greater St. Louis

39. The T21 Traveling Afghan Project

40.  Jennifer Graf Gronenberg , Kathryn Lynard Soper , Gifts and the other Holland officienados who will help you get there

41. Down Syndrome Pregnancy support and resources

42. And all  the amazing bloggers that share our daily lives and experiences. Check the sidebar here for just a few. Yes, really those aren’t anywhere near all of them that are out there. As you visit them, note their sidebars and all the others that have graced us with just a little of their time, energy, wisdom and charm so that we know that nowadays- we aren’t alone. We’re in this together. It takes a village, and I’m grateful for mine.

Quailday: Schoolhouse Rocks…especially inclusive ones…

As I mentioned on Tuesday, the Quail is now fully included in the Toddler class at her little school. The transition started with the beginning of the public school year in August with her spending some time with the teachers throughout the day but typically returning for meal and naptimes. Last month we had Miss Mattie start taking the Quail from the baby room to the Toddler class when she got there to help assist the Quail in feeling comfortable with her new teachers and reaquaint herself with some of the classmates that had moved up earlier this summer. This is a MUCH bigger class then what she is used to (from 1 teacher to 5 students to 2 teachers with 10 students).

When Zuzu moved into the Toddler class she was 10 months old. It was just how it fell in the academic year and how the make-up of kids worked out. So I incorrectly assumed that the Quail moving in there at 19 months old would be much older than the others. Turns out she is the youngest. She is the only one not walking yet and we expect it will be a while before she is able to walk. But as Miss Tandria the school manager told me when Zuzu made this same transition- it’s amazing how quickly they assimilate to the new routine and activities. The Quail has definitely picked up her pace on crawling. She still mostly does an army crawl, but it’s much faster and she initiates it frequently. No longer when you leave her in one spot in a given room, can you expect to find her sitting in the same spot when you return. Usually she’ll follow you!

Their day starts out with group and art time. The Quail is a natural at this. She is a huge book lover and would sit and read happily all day in her dreamland. During art time she only eats about as much glue as her fellow students and was more than happy to fingerpaint and tear up the paper strips for her collage.

Lunchtime is one of the biggest changes. The little kidlets all sit in individual chairs around a toddler sized table and receive their first foray into school lunch. You can guess how this was received by the Quail….pure delite! A number of times in this past week the teacher has remarked that when they finish helping the Quail with her meal and step away to clean up, when they turn back the Quail has stood herself up at the table to get a better view of what she wishes was an all-you-can-eat buffet! I worried she might try to take the other kiddo’s food or offer up some of her pterodactyl impressions in the process of having to wait for her meal to be brought to her. But surprisingly (even though I shouldn’t be so surprised since kids frequently have separate standards of etiquette for home and school), she is just happy to be part of the group and doesn’t fuss at all.

Next up, naptime- again a big worry for me (sensing a theme here yet?), in the baby room the babies all had baby cribs. In the Toddler class, um yeah, the toddlers all sleep on nap mats. Zuzu worried me back during her transition time with this as well. She was notorious in the baby room for staying awake during naptime and going around rattling the babies cribs throughout the span of time and then dropping off to sleep just when it was time to get up. I figured she wouldn’t cut it on a nap with absolutely no caging in to enforce the plan. But she surprised me too, that very first day she laid herself down to sleep, soaked up the nice teacher backrub and dropped off just like it was old hat. I swear I’d pay a mint to have these teachers come to bedtime at our house nightly! So the first all day run to include naptime I was hovering by the phone at 2:02pm- scolding myself for wanting to check in, and  yet reminding myself they said it fine to check! Finally by 3pm I caved in to check, and yes, the Quail- no problem. Three seperate times she looked up and chatted at the teacher and three times she was informed that what she was saying was well and good but it was naptime. The third time was the charm. She conked out and slept the full two hours. And so far has stuck with the schedule.

In the afternoon there is playtime outside. Depending on how many kiddos are out on the playground there is a need to be careful here. The Two’s class should really be called Three’s and those kiddos are apparantly farm-fed. They are LOTS bigger. During those instances when the group can be a bit overwhelming the Toddler teachers have improvised by bringing out a small swimming pool, added some toys and let her play in there. Each afternoon that I’ve picked her up on the playground there has been a minimum of two and once six of her groupees crowding around to play with her. For the kids it wasn’t isolating her, it was just an invitation for them to come sit by her.

And so goes the first full week. I’m completely thrilled with how smooth it has gone and will probably end up back her reading this and reminding myself of how well her being included can go. Thanks so much to all the lovely and loving teachers at my girl’s school. I appreciated you when you lovingly cared for Zuzu, but you’ve really outshined yourself with the two of them. I feel so lucky to know you all!

corner view: green

The question given was what is your relation with nature? Well- if I can eat it- I do. If It’s pretty I take a picture. If it’s both- well then Hallelujah! Happiness unfolds!

happy corner viewing!

Comm

Zuzuday- Stister love

 

So one of the absolute best parts of the Quail moving into the Toddler room this fall- is the added togetherness it affords the Stisters. I remember reading the statistics about siblings of kids with disabilities getting 80% of the attention in the home and how that can cause resentment towards the individual with the disability. It worries me, I want them to love each other and take comfort in each other. I want them to be able to have their own independent lives and yet still connect with each other.

So back to the togetherness. We have a young therapeutic recreation graduate student, Miss Mattie that we have come to school to play with the Quail for 45 minutes a day 4 days a week. She reviews and works on the different activities that we learn in the various therapies on the days we don’t have physical and occupational therapy sessions. Miss Mattie will then report back to us about how the session went and specifically what they worked on. We’ve tried to encourage them to go with the flow of what the natural activity in the room is so that the Quail isn’t being pulled away from her pals but having support and learning how to interact with and keep up better with them.  I’ll break here to tell you I’m a worrywart. Well, maybe noone needed me to point that out. But I’ve worried about the Quail’s ability to adapt to a typical school endlessly. I wholeheartedly believe in the power and good of inclusion. But I worry about the day-to-day reality of what it will look like for the Quail and the need to keep my little feathered friend safe, while supporting this inclusion ideal. Part of that is fear based on a stereotype of her disability and potential capability and part of that is just being a working mom to a young child and spending the majority of your day entrusting her care to others.

So, we have Miss Mattie, to give the Quail that extra oomph to fit in and keep up and look out for her. Well, the happiest part of my days in the last few weeks has been checking my email on break at work and seeing the email from Miss Mattie telling me about the Quail’s day and what all they worked on. The absolute best part of the email; though, are the asides that if she was just using the original checklist of activities we gave her we would never hear about. The little moments of triumph and love and community in her day that warm my heart.

So why is this post on Zuzu’s day you ask? Well because we chose to put the girls in the same school, they sometimes share little recess times. Now the big kids playground is next to; but separate from the babies and toddlers playground. There is a fence in between.  This was an excerpt from Miss Mattie’s note on Zuzu’s birthday:

“Then Zuzu’s class came outside and Zuzu ran over to say hi. The Quail was so excited to see her she waved and blew kisses and they held hands through the fence.”

Swoon… I asked the Quail’s teacher to try to get a picture of it if she can since when I remarked on how sweet it was she indicated that it has happened more than once. She then went on to tell me how Zuzu will frequently run over to the fence to check on the Quail and if she’s in the middle of something else and the Quail is crying Zuzu will start hollering to her to get her attention back to her sister. And keep at it until someone comes. I tell you, that girl’s persistence pays off sometimes. The other gem, she’s created an entourage for the Quail. Apparently a number of Zuzu’s friends have taken it upon themselves to line up at the fence and watch out for the Quail as well. I’ve had more than one mother take the time to introduce themselves at pick-up time in order to remark that their child will ask for a Quail of their own and how cute she is.

That Zuzu, she’s a natural advocate. Bless her sweet head.

Mommaday: Lessons I’m working on learning

So the other day I was catching up on reading Dave Hingsburger. I know, I know- I’ve said before just how much I like the guy and how much I appreciate his advocacy; just how much I have learned and continue to learn from him. I’m repeatedly amazed at how simple and profound his thoughts make the world appear when I find myself agonizingly inarticulate over similar issues.

Here’s the thing- The examples he gave in this post- I was fortunate. I won’t say I never did the things he did as a caregiver- I’m sure I did. But I also had the blessing of his wisdom back then. I had so many teachers reminding me to listen to and respect the words, thoughts and actions of a person with a disability. It was my job as a caregiver to hear them and to help them navigate their world in their own way. There is one thought that sticks with me, and I apologize that I can’t remember who to give the credit too- but there was a time when I worked with people with fairly profound disabilities on a daily basis. We worked to teach them daily living skills. How to unload the dishwasher, dress themselves, shop for themselves, feed themselves. I remember someone wise interjecting during a weekend caregiving stint, that just because someone can do something, doesn’t mean you have to make a lesson of it every single time. Sometimes, it’s nice to have someone get you your cup of coffee. It doesn’t mean you weren’t capable and need to prove that you are learning every single time.

Where am I going with this? Especially since it seems to be the opposite of Dave’s point? That the point is to learn to listen to people. To every person. To put aside the soundtrack in your head of what you think someone should or could do and notice them today.

All people- and here’s the light that just flipped on as I was reading Dave; including the people that aren’t labeled as “disabled”. I’m outing myself here. Sometimes, I’m hyper-critical of Zuzu. Not here, but in the moment, when she’s having a hard time and not behaving like how I think she should behave in a given situation. I rationalize, well she’s new to this earth. She needs me to instruct her. She needs me to tell her we are going to storytime now, because that’s when it is scheduled and you’ll just have to be able to sit still and listen to the nice lady like all the other kids because that’s where good parents take their kids. Even though I see the energy practically bursting out of her. I see that she wants to run and play and not have to answer to anyone at this moment.

I’m still reflecting on this. I’m not suggesting parents don’t owe it to their children to instruct them. I know we do, but we also owe it to our children to let them be who they are. The difference is when the Quail hollers and screams at me and knocks her carefully prepared food off of her plate- I tell her no, but later I will reflect on her strength, her ability to have an opinion and her ability to communicate it so clearly. I make my focus to try to offer a choice next time so she can choose what she wants. I work on the sign for eat and for drink- so next time she wants one or the other she has an easier way to get her point across. Because she has a disability- I expect to have to slow down and learn to work with her, because of how I’ve been trained. Because of this training I know she’ll get there. I tend to not make overarching generalizations about what it means about her capacity and what kind of person she’ll be or what kind of trouble she’ll have or whether or not she’ll grow up to be a doctor some day or not. I know to wait and listen to her and let her find her voice.

I don’t always give Zuzu that same wide girth. If she does the very same action, more often than not, my response is to despair something along the lines of, “Oh no! Not again, you know better than to do that!” And then put her in time out and then later scan my ever-growing library of discipline books for the latest technique to “manage her behavior”.

And don’t get me wrong- I’m not talking about the age dependant biggies here- The Quail- she bites me- she goes to time out. She hits, she gets told no hitting, be gentle and shown how to use her little hand. The next meal we try to be a little more prompt about introducing the choices before she’s so far gone she’d eat her own arm to get a bite of dinner.

But Zuzu, sometimes I forget she is just a little kid. She’s so grown up in so many ways and is the first to tell me what she knows and correct what I think I know. Sometimes I think she should already know more than she does. 

Dave says, “Stop listening to what the stereotype cripple is saying loudly in your head and listen to what the real cripple is saying out loud in the real world. Is it so much to ask?”

It’s not too much to ask Dave. Sometimes we all need reminders. Sometimes we are better about remembering the lesson with some and not others. The listening I think comes easier to me with the Quail than it does with anyone else in my life. Probably because I’ve had so  much practice and lessons on listening to those with disabilities. I guess in some ways I do still group her as having a disability by affording her actions more respect than I do other people’s. I guess what I realize now- is that it’s really time for that lesson to sink in and generalize a bit. If I’m really going to treat people with disabilities with the respect I afford others- then I need to remember to treat others with the respect I afford those with disabilities.  I need to really get the
message that we are all more like than different.

Thank goodness children are pretty darn forgiving.