Thursday, January 27, 2011

18 month Review - IFSP

18 month Review

Well, Jack’s 18 month IFSP review was last night.  The reviews consist of all his therapists and 1st Steps Family Coordinator – Heather.

So the ALL STAR line-up is – Jack in his high chair munching on food so as to be happy and content J
Tara– Occupational Therapist
Kayla – Physical Therapist
Jill – Speech Therapist
Heather – Coordinator
And Me.  This is the 1st team meeting where it was just me…a little weird, but it was actually good.

And of course, being the good Southern woman that I am, I had cookies for all J

And now that I am thinking about it, I wish I had taken a picture of the night, but alas, I didn’t.  These meetings are always nerve wrecking.  I mean there is the initial part of the meeting that is fun and I love our team.  All 4 women are young and fun.  We all laugh and cut up together so that makes the hard parts of the conversation a little easier.  And they have all been so wonderful and supportive through these past few months.  Jack and I are truly blessed.

So here is what Jack is up to:

OT
·         Jack is pointing
·         Jack is eating and drinking well
·         He is feeding himself w/ spoon with help
·         He is getting better at shape sorting
·         Starting to rotate wrist to scribble more appropriately

PT
·         He is crawling, though mainly army crawling still
·         He is trying to pull to stand and really wants to
·         He is able to pull things apart and put things together
·         He can throw with the best of them
·         He can get in and out of sitting like it’s nothing
·         He can crawl in and out of his little chair

Speech
·         Jack can spontaneously and appropriately sign 6 signs on his own: More, Milk, Bye, Hi, All done, Play
·         Jack can sign appropriately 11 other signs with verbal/ visual  cues: ball, bubbles, sing, pop, mama, open, Twinkle Twinkle, Spider, help, baby, eat
·         Jack loves to sing and lets me know when he wants to sing “Twinkle Twinkle” or “Itsy Bitsy” – we have sort of made up our own signs for the songs.

Overall:
Jack is doing really well. He picks up on any game/ toy that has cause/ effect really quickly. Whether it’s shape sorting, blowing bubbles, pushing buttons, turning pages, etc.  He also loves to play with balls and enjoys the back and forth play that they bring.  We are working on pretend play with cars and a baby (feeding the baby and combing the baby’s hair). His cognition is great and I couldn’t’ be more proud. When I tell him to do something like feed the baby, he knows what to do.  He is definitely an observer like me and picks up on cues and instructions that I don’t even realize.  He of course loves verbal praise and cuddling and I am so grateful that he is still my mama’s boy!  He will crawl over to our stack of books and pick out a book and give it to me, he will spontaneously sign “milk” when he’s thirsty, he will sign spider when he wants to sing, and he will even crawl into the kitchen and sign “more” “eat”…he does this a lot J  little piggy.

Goals:
The highpoints for the next year:
1.        Crawl appropriately on all 4s
2.       Stand and balance appropriately (we will be getting orthotics for Jack’s feet)
3.       Strengthen those upper arms
4.       Draw/ write
5.       Feed himself w/ spoon and fork without assistance
6.       Be able to manipulate sorting games…that fine motor sure is hard!
7.       Pick up more signs/ words
8.       Pretend play
9.       Be able to request what he wants to do either verbally or through signs

Jack makes tons of noise and babbles a lot.  As far as spoken words go, He will say “Ma” occasionally, and “Bye Bye”.  However, Sign language IS language and I know that he will eventually speak.  And I am thrilled at his progress in signing.  He is the cutest signer in the world.  I just want to be sure I am giving him enough exposure and signs so that he has what he needs to communicate.

Also, we have decided to add a developmental therapist to our team.  He/She is someone I will meet with once a month to talk about play and discipline (since we have hit those terrible 2s).  More to come on that later.

I am pleased with where Jack is right now.  Overall it was a great meeting and I will be sad to see these ladies leave in a year and a half when we have to phase out of the First Steps program. Many tears will be shed. They have helped my son and me so much and I will be forever grateful for their love and guidance. 

and....WAY TO GO JACK!!!!!!!!!!!!!!!!!!!!!  

Wednesday, January 19, 2011

Grotesque

Article:
Can a new blood test make babies with down syndrome disappear?

I can't tell you how much articles and ideas like this hurt.  To think that the scientific community is trying to weed out children like Jack is bone chilling.  I work in the scientific community and don't always agree with certain research, but I absolutely abhor this shit.  (sorry - I am pissed).  Unreal.  Seriously - people are funding this sort of research!? This has to be genocide on some level.  This is ridiculous and if I could go picket right now I would.  I totally understand the screening side of the article/ detecting the presence of Trisomy 21 for families so that they can be informed...but let's be honest.  Most research like this has one goal: perfection of species.  And by creating such tests, they can allow more moms the option of abortion, thereby, saving our world from the presence of DS.  I could scream.  I don't think I have been this angry in a while.  I should shut up before I say more things.  Seriously - though, how could the world think this is bad and should disappear:


Tuesday, January 11, 2011

Have the terrible 2's started early?

I must say I have been blessed.  Jack has been the most mild-mannered, sweet boy these past 18 months.  The only time he has ever really cried in the past was when he was in the hospital and they were torturing him or if he accidently bumped into something.  He never cried when he was hungry or tired....I just learned to read his cues.  Like when he would stick those 2 fingers in his mouth - he was ready to be cuddled and go to sleep or when he would just say "aah" he was hungry.  All in all - he never really cried or fussed.  He was always smiling, laughing and being silly.  And once I started teaching him signs - it made it even easier.  He signs for eat and more consistently now so that's quite helpful.

Well, we are over that hump I think.  He has learned and gained attitude.  My precious muffin has pitched his first fit.  That's right. This little one right here:

 At 18 months old he is trying to get out of things (therapy, putting on his coat, diaper changes) by screaming, kicking his legs and crying.  This started this past Sunday.  We were playing as usual and he just sort of freaked out.  I was so worried that he was in pain or hurt..then he would stop and go back to playing and then he would do it again.  He did this off and on all day/night until bedtime.  I was totally confused - was he teething? Did he have a tummy ache?  He had pooped, peed, eaten, etc...all his needs had been met.  I had no clue.  Then last night we got home and did our usual eat and play before PT.  Kayla, his PT arrived and we started tehrapy.  We are working on standing, crawling on all 4s and getting that big belly off the ground :).  About 20 minutes into therapy he started crying/ getting mad again.  He would reach out for me each time...it was heart breaking.  Then he would stop when he got his way, but as soon as we started working on something he would do it again!  STINKER!!!  So, then it was becoming clearer.  He was crying/ fussing to get out of working.  This was not going to fly.  We decided to comfort him when he is fitting, but not by picking him up - just by letting him cry a few minutes and then trying to re-direct with a song (He LOVES singing) and then back to the task.  As soon as Kayla left - he was my happy, sweet, calm little boy.  This is new to me and so unlike my Jack, so I am going to have to do some creative thinking especially since we have therapy 3 nights per week. 

Oh the terrible 2s may have started early.  This should be interesting.  What do some of you do for temper tantrums at this age and especially during therapy?

Monday, January 3, 2011

Good Bye 2010

I've been dreading writing this post.  In fact, I have thought about giving up on blogging all together.  I am not sure why - but I guess I feel sort of useless. I feel so lost being a single parent and feel like I have nothing to offer anyone.  Jack is starting to become a "toddler" - you know, get an attitude - bite, hit, pull hair, test his limits and I am angry.  I am angry cause I have to figure out how to discipline him all by myself.  No one is here to help or to offer advice or wisdom. Once again, I feel the loneliness of this single parenting and it sucks.  But, I know I will figure it out and I pray for wisdom so that I can give him healthy limits that will benefit him in the future. 

Christmas was great and so was New Years.  It was great to go out for NYE while my parents kept Jack (Thanks Mom and Dad).  I felt pretty and fun, and that was nice and I danced the night away, and boy was I sore!  I work out - I do the P90 stuff - but on my gosh..I WAS SOOOO SORE from dancing!  It was a blast though and I would readily do it again. 

Here is our gang:


2010 was by far the hardest year of my life thus far.  2009 was rough - getting used to being a mom, navigating Down Syndrome, etc.  2010 started with lots of illnesses for Jack and ended with a divorce.  Wow.  One day, maybe I'll write a book, but for now I'll blog and journal.  I admit I am lonely and squeeze Jack for every ounce of affection I can get.  I miss hugs and kisses and he gives pretty good ones. And I def wonder what the future holds for us.  I admit being the sole provider for him/ us is hard...very hard.

So, here is 2011 - I'll be 29 in March - Yuck!  Jack will be 2 in June!  And here is my bucket list (well, most of it...I can't put everything on here! :)):

1.  Take swimming lessons with Jack
2.  Put the house on the market
3.  Go on a vacation
4.  Complete Chalean Extreme
5.  Run a few races
6.  Do more yoga
7.  Teach Jack to walk - hopefully - he is 26 pounds and starting to kill me!
8.  Set up Special Needs Trust
9.  Go on a date (towards the end of 2011 maybe...def not ready now)
10.  Take time for myself at least twice a month
11.  Go hunting/ shooting - that's right - I want to do this!
12.  Go to more Blues games and go to a Rams game
13.  Get pedicures whenever I want
14.  Go on more play dates w/ Jack
15.  Play Kickball
16.  Get a new camera
17.  Learn and teach more sign language


I think that's it for now - there are more - I have many goals - but they keep me moving.

Also Jack's 18month appt went great.  We have to get more blood work, but he is thriving and doing well!  Go Jack Go!!

Perfectly written

My dear blogging friend wrote this wonderful post and I have to share.

Thanks Angi for being honest, and I too share in your thoughts.
New Year New Life

Please read.

Happy New Year!