update/thoughts

Here is what I have been thinking about:

I was crazy when I was pregnant with Landon.  I refused to eat any fruit not organic, since i was not sure of the pesticides.  I started crying when they asked me about the flu vaccine, and I just could not do it.  The doctor asked me what was wrong with me (he's a jerk sometimes).  I stayed at my sister's for almost a week when I had my hardwoods redone.  I covered my mouth anytime i walked near fresh paint at school and made a big deal about any of the walls being painted.  I ate no hotdogs, no lunch meat, I even did not eat seafood since I was not sure about mercury.  Landon was delivered by csection and I am hoping the head molding did not cause this, but that just started the last 2 hours when I tried to keep pushing and contracting longer.  I did go to get a flu shot when he was a few weeks ago and maybe stepped in a radiology office. My sister told me there was no radiology there, but I left immediately.  i go over this stuff, over and over, and think what did I do?!?

Then, here's the great part-  I was blessed with the sweetest,most loving little boy I have met.  He is so smart.  He can't barely talked and he wants to count everything, points along at each item, as he looks at me counting. He knows every shape, even octagon.  He knows number 0-7 right now.  He knows a bunch of colors.  He kisses me nonstop.  He loves to read.  He has the greatest laugh and smile I ever saw/heard and he's my son.

So maybe I did not mess up....maybe I was blessed beyond measure, and for once everyone else looks at my son and thinks-- I want a kid like that!!  I always think if I got rid of the apraxia, who would I  have?  I don't want any other baby but mine.  I love him to a million pieces, and I am heading towards- I did not mess up, I totally lucked out.

:)

My Daily prayer

Every night before I go to bed, I plead God to have Landon be talking soon.  I have repeated this prayer for at least the last year, and it's so hard sometimes in the morning when I get him out of his crib, and he can't say hi yet or much of anything.  Typically, I do hear a mama or mom as i get him up, and I always smile inside, saying to him, you're right baby, I am your momma.  It's a hard journey, days are long, and hard.  I try to remember that this is a CHILDHOOD disorder, that at least the speech part should be caught up by age 8.  I worry about the other areas he will struggle in because of this, but i can't really predict that.  Many kids struggle in something;  I just already know what our struggle will look like for the next few years.  Then I pray for Logan.  He is 11 months now and not babbling, not picking up food yet.  I don't want him to have CAS of course, but there is a small part of me that thinks if they both have it, then it's definitely not my fault at all.  Ugh.  Logan is able to wave now and clap of course, which Landon could do and all around, they are very similar, but Landon was babbling a lot by now, just never varied syllables or even consonants.  I will probably refer Logan for speech by 12 months.  He has said Mama before now, and now he is crawling, pulling himself up, and trying to walk.  He seems less stubborn than Landon.  I just keep praying.  Without a prayer,  i would succumb to this darkness i feel.  Luckily, Landon is good about letting us know what he needs and wants; I just want to know the other things- what does he feel? What does he think? what goes on in his mind?  Time will tell. Lord help us all.

PROGRAMS and PROGRESS

This journey is wild!  Originally, I did not think we would still be here, but progress is happening, and for that, I am grateful.

Landon can blow a kiss now, do the motions to many songs, has been able to blow a bubble lately (not yesterday- he kept trying too and got frustrated), beginning to pucker, he is taking bites of everything, and attempting to imitate.  His most consistent words are mama and yea. His core is improving by doing wheelbarrows walks, flips, doing work while laying on the exercise ball.  He is trying to use his spoon at home.  Landon is a great kid and we are moving forward.  In speech on Thursday, he said go, yea, da/dog, eda/elmo, me and you, grr for tiger's roar, wa/want.  His speech is highly unintelligible and has many vowel distortions as evident even in this small sample.  I am trying to teach the vowels to him, because vowels are what hurts intelligibility the most.

I went to two programs yesterday.. both would be great for landon.  Anything is better than the daycare he is in, with has such limited experiences, and toys, and no knowledge of how to help him.

JOWONIO: private, inclusive preschool.  He could go into the 2.5 hour program, or maybe the 5 hour program.  In 2.5 hour, the ratio is 5 kids with services, with a total of 10 kids.  At least 4 adults in the room.  SLPs are PROMPT trained.  There is a sensory gym, lots and lots of toys, and it's kind of a free flowing experience.  If he stayed there, he could go into the longer day classroom the next year, they have before/after school programs he could join, and I could go back to work.  Negatives: seemed less academic, a lot more needy kids, in that, I could pick out who is getting services and who is not.  It would be a 5 day program.

CHILDREN'S VILLAGE @ PARK HILL:  Preschool, not as inclusive, but half time would be.  It is a 2.5 hour program.  Therapist not trained specifically in apraxia, but came and met with me, was very nice, did attend David Hammer's talk in October, and seems to be using "Moving across syllables" and building words off the sounds present.  She mentioned some cues, but not specific.  Program is an 8:1:1, 8 kids with services, 1 teacher, 1 assistant.  Every other Friday, they close to meet as a team.  2 days a week, it's just the kids with services, the other days, 16 other typical kids from the district join the classroom.  OT/PT space seemed nice and the teacher was nice too.  Less severe kids, amazing gym.  It's only 2.5 even the next year, so he would have to transition somewhere else so I can go work...


Thoughts???

I have a few more to look at, but these are my top choices and are less than 2 miles from my home...


My little man working hard...

http://www.youtube.com/watch?v=SuI32MAJE70&feature=share

God is good

Life isn't easy. It's not supposed to be. God never said it would be, but He does take care of us. When my mom was sick, and I lived in Albany for grad school, I joined Gilda's club, a place for people and their families with cancer. I used to go once a week for the caregiver group and that was very helpful. The last time I saw my momma alive/conscious, we went to a lunch and talk at Gilda's club. They saw me through. I was already in counseling at my grad school at the time my mom died, but there were three, soon to be four of us students whose moms died that semester. Our counselor, Danielle formed a "motherless daughters" group and words cannot express the help that was to get through the last two semesters of grad school in deep grief. I later met a friend on Lorie on MySpace's motherless daughters group. She lives in California and we've been friends ever since. I even got an invite to her wedding. Now, it's my new challenge, and I met Laura, a fellow SLP with a little one with apraxia. We talk almost everyday to some extent. I trust her, and I know she gets the raw pain I feel, but also the intense pride. She's a wonderful SLP, going to be an apraxia expert, and has taught me a lot.  Lesson learned: God will always see us through.

TOO CLOSE

My boys are 18 months apart, far too close.  I am praying in the future, I will think this was a great move on my part.  In some ways, it is good, because had I gotten to where I am now with Landon, I  honestly probably would not have a second; I would be too worried, so that's great that Logan came before i fully realized the impact of apraxia.  I think Logan has apraxia, too, so that makes me sad.  I am working so hard with boys of my kids and then when they are not right where they are supposed to be, it is so frustrating!!  I always wanted a third, and I think two things: 1) had my Mom been alive and we had more support from families, or people coming by to visit, offer to babysit, help us at all and 2)no apraxia,  I would have a third, but sadly, I am 95% sure we are done.  We are talking about Alex getting a V and being done.  Very sad, but we can't afford more kids, and I can't chance apraxia again.  Landon and Logan are both sick now, which means Landon talks less, which I hate.  We saw my sister and Nicky this weekend, and my dad stopped by for about a half hour; otherwise, we didn't see anyone.  Yesterday was fun at least. :) Sometimes it feels lonely.  Almost time for bed, then work for school, then sleep for me.

Here's Landon's therapy schedule- look how busy he is!  How will I ever do this in the summer!!

Monday- OT- 8AM
830-TEACHER
315- Speech @ SU

Tuesday-
945-teacher
11am- speech

Wednesday-
3pm- speech

Thursday-
1030- PT
11AM- Speech

Friday-
8AM-OT
3PM-Speech

And logan gets PT Tues/Thurs now.  blah blah.

my boys

I have a lot on my mind, but I can't express it all.  I was looking at my perfect little boy who begs for tv with his kisses, thinking he has no idea how worried about him I am.  He is just so happy and carefree. I wish I could be like that!!

Few amazing things:

I have been hearing /I/ like in /itch/ the last few days while saying /mimi/ which is what Nicholas calls me, so I know Landon is listening a lot.  I have heard /e/ like in ed and /i/ like in bee and many other vowels.  He is varying them a lot.  It's funny because before when he babbled all day, he was louder and more confident; now that he is trying to talk, I find him quieter.  He tries so hard.  He is much more confident in his kisses-- kisses everyone, everything.  He is jumping well now, clearing the floor, not on command, but often when happy or playing around :)  AND yesterday when I dropped him at daycare, I blew him a kiss from the door and he blew me a kiss back- FIRST time.  My eyes started to get teary and I ran out to my car.  No one knew what it meant but me and him, and that's enough for me :)


Logan:- Logan is sitting up now from his belly and can get up in all four for short periods.  He is moving backwards.  Hopefully crawling soon.  He is being a pain with his solids, but I am not sure what it is.  He is fine with his teeth brushed, which Landon hated and he is pretty lax.  He is not babbling yet, but I have heard mo, yea, and mom. and /n/.

Hope the rest of the weekend goes ok.  I just wish it were warm out here. :(

Kim