Sunday, June 9, 2013

So Big!

They just keep growing, don't they?  They wake up in the morning and for some reason, they've grown a bit each night.  It's horrible.  And lovely, I guess.

We got our "18 month" photos back a couple of weeks ago and I just love them, but good lord these two little ones are getting so big. I'm reminded of this regularly when lifting Caleb nearly throws out my back for the thirteenth time that day, or when Grace can actually out-run me as she dashes around a corner to hide my phone...again.

It's been an interesting few weeks.  We've been battling the Early Intervention changes and I took a pretty hard stance on getting our IFSP changed after I signed it under pressure, without real agreement.  The whole team is coming back over on Tuesday to make some changes and I'll have another tough battle, I'm sure.  It shouldn't be this hard to just keep the same level of services, especially when the child receiving the services hasn't made any "improvements".  It's all budget cuts and structure changes at work, and I can't stand for that impacting my son so negatively. 

I know he's not better than the other thousands of kids needing services and probably going through similar battles. But we're HIS parents, he doesn't have anyone else, so we'll keep fighting until he gets what he needs.  At least close to what he had before.

I'm really excited that they've given us back his physical therapy plus some (he had gone months without PT because of our move and then the program changes), so he is getting PT twice per week now which is awesome (even if they claim it's only temporary)! I'm worried that this will mean he won't get OT, Speech, and DSI work as much as he needs it, though (which is what's happening now).  We have to select a new team lead because ours quit and all I care about is their schedule flexibility. If they have to come to all of the sessions, I need someone who can be here several times per week. Where could I find someone like that? It's all just a mess. I should be selecting a team lead based on what Caleb needs and how they work together, etc.

We did, however, find a respite provider! She's only been here once and she had to call us to come back home after about an hour and a half because Caleb lost it and wouldn't fall asleep with her. I'm not sure what we'll do...but I'm really hoping that B and I can get out a bit more. I'm also hoping for a little more one-on-one time for both kids, but Gracie in particular.  She's getting more and more frustrated with the therapists coming in and everyone focusing so much attention on Caleb.  She's usually really good about playing with him and then finding something else to do, but recently, she's been just grabbing whatever he's working on and darting off with it, or literally sitting on the therapist's lap to get more attention.  I feel really bad for her.  Hopefully we can get some more individual time with her by having the respite provider come and help out.

We have a big appointment this week with a developmental psychologist to determine whether Caleb is "at risk" for an Autism Spectrum Disorder. We have heard the "at risk"  term being thrown around a bit since he was first diagnosed with delays, but nothing official.  Then we started hearing other things and now I'm not sure what to think. He has "stereotypic" behaviors and "sensory seeking" behaviors, but all of it can be caused by his CCD (Corpus Callosum Disorder).  it's a weird place to be- I know that he could benefit from the diagnosis because of the habilitation that he would get, and the diagnosis wouldn't actually change anything...but I hate labels and he already has so many.  I think I can get over that label problem if he qualifies for habilitation.  He is, however, incredibly social and has fantastic eye contact.  Doesn't necessarily mean he isn't ASD, but I know it's somewhat rare.  We'll see.

Grace has had a bit of a language explosion the last week or so.  She still isn't proactively saying many words, but she will repeat everything and loves to sing her own little songs, it's adorable.  She has probably 15 words that she says regularly, only about 5 or 6 that she says without prompting.  She knows several signs and understands what we're saying, though.  I do absolutely love her songs! Today in the car, she was just singing away about ba-ba and la-la-la, ga-ga, doo-boo, fa-da-ba.  Love it.

Here are some of the pictures...  ::heart melting::

Just as a note...remember that bucket from a while ago?

7 months...couldn't even come close to getting them both in that bucket now. It was pretty cute, actually. Grace picked it up and started carrying it around.  It was a bit much for this mama to see her tiny baby carrying that big bucket. Wasn't this only yesterday?


  1. Oh my goodness - those pictures are just amazing! SO adorable! Gracie looks SO tall, and Caleb is such a little man! How do we have 18 month olds already?

  2. They are beautiful!!!

    I can sympathize with your struggles with therapy. We are in the same boat for Bobby (and it is hard for the twin not getting therapy... I try to make sure that I have time just with Maya, as does Peter, so that she doesn't get shafted, if that makes sense, since B needs more of us at times.) As much as I hated getting the ASD diagnosis, it opened up more doors for therapy, which Bobby needed and wouldn't have gotten without it. But it is tough. And it feels like it's constantly a struggle. Right now, I still haven't heard back from his case worker about scheduling his PreK IEP meeting... GRRRR.... It's not like I emailed you a while ago or anything! It sucks... Not cool... If you ever need to vent, just email me. :)

  3. I am so sorry to hear about the issues you are dealing with right now, just trying to get the best help and care for Caleb. I hope it works out and things get smoother soon. Also, sorry about how hard this has been on Gracie lately. I can only imagine how confusing that must be to see everyone that comes in give almost all of their attention to Caleb everytime. It must make so sense to her. Makes me feel so sad! :( I am glad you are able to work on getting more one on one time for her. Wow, these photos!!!! They are all sooo beautiful! Gracie is one of the most beautiful little girls I have seen. And Caleb, he is such a handsome guy!!! And look at him standing up by the chair! He looks so grown up. And just so happy. You must be very proud of both of your amazing little ones... and should be very proud of yourself. It isn't an easy hand you have been dealt but you are doing the best for these two :)