Standing Tall

Aily still has issues with crawling, but we are starting to practice standing. One of the things that we do to strengthen and build her muscles is to have her sit in a kneeling position, since she is there anyways I guess it's as good a time as any to teach her to say her prayers. But in the meantime, it is so good to see her standing tall.

Publishing issues

The last couple of days I've been having publishing issues, hence the torrent of posts today.

Anti-crawling

No, it's not me who's against it, it's Aily. She thinks that crawling exercises are the most horrible thing ever. It's become a daily battle, I try to make sure that there is always something rewarding afterward, but my word the hassle.

Letters of Love and Learning

My two sisters, Shelli and Charlie, both have 13 year old kids, I have a 14 year old who lives with my mom and a 12 year old who will be 13 in a little over 4 months. Probably needless to say we four, myself, my mom, and my sisters, get more of the current generations grammatically nightmarish, and definition defunct conversations than we can stand any longer. During a recent talk with my sister Charlie which mostly consisted of complaining to one another about the conversational capacity of our children and their insistent misuse of the word 'random'. I proposed that the pre-teens and teens start being made to write real letters to each other, everyone but the kids themselves loved the idea, this should be an interesting endeavor.

Overwhelming?

Sometimes looking ahead is overwhelming. I'm a pretty laid back person,, so sometimes I wonder if I really have what it is going to take to be the advocate I need to be for Aily. I'm stubborn as a mule, sure, but mules pull, they don't push. I have never had to push my oldest girl, she's been ready for anything from day one and dragging me behind all the way. My middle girl is perfectly content to take her own sweet time at things...it's just that her sweet time runs a little faster than normal time and she is consistently far ahead of her peers, and my readiness. I have no experience on pushing, so I guess I will just have to pull.

When Brianne, my oldest girl, started kindergarten she had never had daycare or preschool, the fact of which I made sure her teacher was aware. She was smart and knew all the basics, but her social skills were not quite on par as she hadn't been around many kids her own age. She kept getting in trouble with her teacher. Everyday her teacher had some new complaint, finally a meeting was called by the principal. It was Brianne's father and I, her teacher, the principal and vice principal, the school counselor, and the district head counselor.  It was a very long, and at times very heated meeting. I didn't know anything about laws regarding public education or any of that stuff, but I knew my girl. I knew how smart she was, I knew how fast she could learn things, and I knew if they'd give her a chance she would do well. Her teacher was angry, at her wits end and did not want Brianne in her class; her father was offended and angry, and taking it as a personal; the principal, vice principal, and school counselor didn't seem to know what to think. Finally the district counselor gave her opinion, and it became clear that she had final say over the schools employees, Brianne would remain where she was, all she needed was to be given time to acclimate and develop her social skills. I nearly jumped for joy

I know that when it is time for Aily to start school there will be a lot to work out, and when that time comes I am determined that I will be prepared. Until then it is all I can do to push her to keep developing the skills she will need to succeed.

31 for 21 derailment

Well my good intentions got derailed this week between being sick, trying to get things set up so we can move, and my oldest girl's first middle school orchestra concert. I will try to do better in the up coming week.

Percentiles

My younger two children are tiny. 4yr old Victoria is in the 2nd percentile on the WIC formulated height-for-age chart, and the 10th percentile in the weight-for-age chart; she is my most neurotypical child, a little advanced is all. Aily, who is 21mo doesn't score a percentile on the standard, for age, WHO charts, but on the height-to-weigh WHO charts she scores in the 50th. Aily's doesn't rank on the charts for girls with Down Syndrome either, which makes them pretty much as useless as the standard charts.

My oldest two are above 50th percentile weight and height wise though they've both pretty much hit the BMI age instead of charting; Brianne is 12, and Keegan is 14.

The girl's grandmother's are 59 inches, three inches above being considered in the height range of dwarfism, both of their grandfathers are above average height. Oh their dad, my ex, is short too, 5'6" on a good day. Mostly in my family we are short, I'm the tallest girl, at least until my nieces Sam and Angel outgrow me. Brianne is only expected to reach my 5' 4".

In light of all of this, when they told me that because Aily has Down Syndrome she will probably be below average height, 'oh good, she'll fit right in then'.

What does it matter? Aily wore newborn clothes for months and is only in 9mo clothes now. Brianne never wore newborn clothes and was in 9mo clothes by the time she hit 3mo, she's in juniors size 2 now. I have my pixie girls and my tomboys, it doesn't change how much I love all my children. Aily might have to wait longer to ride the rides, but considering she has a conniption if I even try to play on the park with her, I don't think that's such a big deal, just means I have some one to wait with while my thrill seekers have their go.

Riding Along

Aily sat on a ride-on toy, without throwing a fit, for the first time today. It is amazing the little things I took for granted with my older children, the little milestones like peek-a-boo, putting objects in an out of a container, and and playing on a ride-on toy. And the bigger ones that Aily hasn't reached yet, like crawling on all fours, standing, walking, and talking.

Those milestones were exciting when my other children reached them, but because it was a first, not because there was any doubt that they would reach those marks at a relatively average age.

Now, with Aily, every new thing is a celebration, because life no longer comes with any guarantees. I have seen how the sure and expected things in life can suddenly disappear. I know that no day should be taken for granted, no accomplishment should go uncelebrated, no opportunity should go unanswered.

More, more, more

More is what I haven't gotten. Aily hasn't been willing to even attempt any more signing, and resists hand-over-hand. Oh well we will keep on trying.

Don't Leave My Sight

Aily had reached the point where when she gets back from her dad's on Sunday nights she throws a fit if I leave her sight, or put her down. Fun, fun, fun lol

Oops

Well got a little off track with the 31 for 21 challenge. Aily's therapist was very happy with her progress the last couple of weeks, next Thursday we're going to meet with her Occupational therapist to figure out how to start getting her more mobile.

Send Me a Sign

Well today is day 3 of the 31 for 21 challenge, so far so good. Aily is finally picking up some signs, just 'more' and 'mommy' so far but I will take all I can. We are going to start soliciting help from my sister, who has worked with special needs children in care assistant positions, on picking up some more and getting Aily to be more receptive to hand-on-hand as she pays little attention to modeling. We'll do what we can when we can and see where it leads us.

Here are some quick pics of little Miss. Mischief trying to escape the confines of her chair after dinner. She was a bit of a ragamuffin today.

Boo

Aily finally got the hang of Peek-a-Boo, love watching her hit those milestones. Maybe a year later than your average kiddo, but Miss. Mischief is anything but average.

31 for 21 Challenge

October is Down Syndrome Awareness Month so I will be participating in the 31 for 21 challenge. That is 31 blog posts, one for every day of October, to help raise awareness for Trisomy 21, Down Syndrome. I haven't been blogging long so we'll see how I do. Not all of the posts will be about Down Syndrome, but they will mostly be about Aily and her mischief making siblings. If you would like to learn more about this challenge click the button. 

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