My Makily.

She had her IEP on Friday.

So I was dreading it like the plague.

Lots of reasons really.

Last year they said "Makily is unable to participate in meaningful play with others due to her disability".

This TOTALLY JUST CRUSHED ME.

I mean I knew that already but to hear a professional say it was like a kick in the chest.

I took J with me and he did AWESOME.

It wasn't bad at all.

Since school started this year Makily has gained three months of development which for her is AWESOME. They all agreed she is becoming more and more and more social. They're is one little boy in her class that ADORES her. They said that when he comes over to Makily that she just GRINS and laughs. He strokes her hand and says "Oh Makily" and loves on her.

They said she loves him as much as he loves her.

*gives me warm fuzzies*

Mrs. Byrd also says that if you sit down near Makily and don't acknowledge her right away she MAKES sure you know she is there. If you are close enough she will touch or patt your arm until you look and say "Hi Makily". If you are sitting farther away she will lean over or around whoever is in the way and stare until you talk to her. She does this here at home so I was not surprised. In church if my mom is holding J and Makily decides it's her turn for Nanny time she will lean past me and GLARE at my mom until she gives J to me and takes Makily. Then she will snuggle right into my mom, patt her in the face while smiling and talking....then eventually fall asleep in her arms.

SERIOUSLY.

This kid knows how to get her way.

Last night we went to dinner with my parents. She was at the table with one of her favorite toys having a BALL. The waitress came up and was telling her how cool her toy was. Makily screeched her excited "ahhhhhhhhhhhhhh" with huge goofy grin at the lady and I could tell she wasn't sure what to make of it. LOLOLOLOL I told her that was her "happy screech" and the waitress thought that was cute as can be.

So socially my baby has come right along.

They all agreed that music is a HUGE bright spot for Makily. She dances and "sings" and claps. I already knew that music was one of her favorite things. She goes CRAZY in the car. Her teacher Mrs. Byrd said that she discovered Makily likes rap, top 40 and Pop music. She is not too interested in "kid music" except Mr. Richard (she's seen him live maybe that's why?).

They all also agree that Makily struggles with transitions (she's always been that way since birth). She cries for them for about 15 minutes between physical activities (meaning things that are physically difficult for her). She only cries for about five minutes here at home so I think she is trying to "work them over". Her OT said eventually she calms and does what is required.

Speech says she is seeing Makily showing interest in mouth movements and trying to imitate certain things....but as always it's not a consistent thing. That makes it hard to gauge if she is doing certain things intentionally or if it was just a sporadic thing that she happened to do at that certain time.

We have struggled with this sort of thing with her for a while. She will have awesome days where she is RIGHT ON and so bright and then the next day she won't do the same task she did the day before.

It's confusing.

Her private speech therapist Elon and I have seen huge gains. She is using her PECS board in identifying objects (i.e. Makily show me the flower toy....Makily where is Spongebob?). We hope that one day she will be able to choose what she wants with the PECS board but we obviously need to make sure she can identify all the choices so that's the step we are in now. She is doing well with that. She will sign more when asked "Makily do you want more of your flower toy?....show me the sign or use your voice". She will either sign "more" or say "aaaaaaaaaaaaahhhhhhhhhhh" while clapping her hands. We have also recently seen that she is chewing and moving food around in her mouth SO well. Elon REALLY believes that if we can JUST get the turd to swallow she could at least eat enough for enjoyment purposes (we'll never be rid of the tube, I don't think so at least and that's okay, I can live with it). She chews and spits right now. Elon gave me some exercises to do with her mouth (using hot/cold on the back of her tongue to stimulate a swallow). I am not getting my hopes up but I also am not giving up on her either.

*sigh*

She is doing MUCH better with the oral aversions she has. I no longer have to practically hog tie her to brush her teeth. She lays there and let's me do it with no tantrum which saves TONS of time in the morning and I am SO grateful for.

PT is going to be turning into (well sort of already has) boot camp.

She is going to walk dammit.

SHE IS GOING TO WALK.

We have started making her stand to get her pants on, walking her to and from the van. They are walking her to and from the bathroom and activities at school. Once again Makily is difficult when it comes to walking. With a gait trainer she figures out she can sit in it (The Rifton Pacer) so she sits on the sling seat and tries to swing on the damn thing.

*sigh*

We just got a Crocodile from a friend (thanks Keely!) and so far she will stand at it but will not walk. She ONLY takes steps with you holding her under her arms OR holding her hands and nearly dragging her. She will take steps but begrudgingly....better with the right foot than with the left...bigger steps on that side and I don't know why. She can stand while holding on to something for long periods. She'll stand in her stander indefinitely. I am not sure why she is resisting so much when it comes to this. Is it her AFO's? Do they feel weird on her feet (it looks like it would feel weird to me)? Is she unsure of her balance? Is she just being spoiled? Lazy? Have we coddled her too much? This is yet another frustration there is to having a non-verbal child. I just wish she could tell me what is making it harder for her. I typically can figure out what is going on with her but in situations like this I am left scratching my head. How I wish I could get into this kid's head and walk around for a while, I think I could help her more if I just knew exactly how her mind works.

I don't know but whatever it is, we have to overcome it.

I NEED her to walk.

I NEED IT.

Yes that sounds selfish but when I look to the future I realize that Makily MUST be able to walk when she is older and weighs to much for me to carry. I have learned already that I need to save my back and physically need to keep up with MYSELF (which I have not been, that's a later post) or I will be regretting it later when she is bigger.

I had gotten really worried about her behaviorally.

Makily has always done well when we are out and about. Recently I started noticing she was not tolerating being out. In fact they're were like four times in a row that she was REALLY cranky the entire time I was out with her. With all going on with Maia (how I adore her, she stole my heart years ago) recently it was starting to worry me. Well I braved her out again twice the week and she WAS THE HAPPIEST little booger ever. I don't know, maybe she was just having a rough time before?

Everyone at the IEP agreed that Makily is just a love. That everyone that works with her can't help but fall in love with her. She's a joy and a sweetheart and that makes me so happy. They all raved about how cute she is and how they love that she has matching bows to most of her outfits. (Chontee when Bri starts school, they are all going to just DIE!)

So overall good things. I am looking to find a switch that we can use at the house so she can turn the TV on and off. She uses the computer at school to play music. It plays for a little bit and stops and she has to hit the screen to get it to come back on. She LOOOOVES TV (seriously, she's a couch potato) so I figure it will motivate her to start using a switch more at home.

Basically Makily will be getting all the services that I wanted to have for the next 12 months. I did not have to fight or argue for anything. That was nice. We JUST discussed goals for next year and NOT kindergarten (ugh, just the mention of kindy makes me stomach churn....Mamma don't like change and HOW THE HECK IS MY BABY OLD ENOUGH FOR KINDY?). She will get a new teacher and class and I am not terribly excited about that. Not because I don't like the teacher (I don't even know who it is) but because Makily has grown fond of Mrs. Byrd and Mrs. Leslie. They love her, she knows it, I KNOW IT and I hate to see her have to adjust to new people and say goodbye to the class that she has been in for the past two years. I'm sure I will bawl at her graduation from Pre-K. Might as well prepare for the flood now....it is going to be BAD.

sigh.

I'll leave you with a video of Makily in the van.

It shows how much she LOOOOVES music.

She really JAMS in the car.

I love this kid.

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