Friday, January 22, 2010

Friday Already??

Man, this past week just flew by!! Maybe being out 3 nights a week makes it go by faster? I am still really enjoying my placement, but I am not sure that I would like to work in a long term care facility. I still think that I would like to do community care with children who are MFTD (medically fragile, technologically dependant). That was Faiths term for the first 6 months or so, because of the feeding tube. My heart seems to keep going back to that:-)

My timing with residents is starting to get better. I know when I need to be in certain places and I find it a challenge to work with one resident in particular. He requires quite extensive HS (bedtime) care, and it can take some time. I was really organized last night and was able to assist him and make it back for my other resident in time for her to get into bed. Nice to see that I am making a bit of progress there! I still think I have a lot to learn and I have a ways to go before I can say that I have it all under control, but I am making progress and I am thrilled!

Yesterday we had our annual review and reassessment for Faith. We met with the OT, PT and SLP. I mentioned the few things that concerned me in each area of development and they watched her.

We talked about the "diagnoses" of Failure to Thrive and Global Developmental Delay. I asked about the GDD and what it really meant...they basically said it was a catchall diagnosis for kids who are delayed in more then one developmental area. I don't think I mentioned it here yet, but those are 2 of her diagnoses the doc put in a letter. The other ones were epilepsy and strabismus bilaterally.

I told the PT that she was becoming clumsier then we had seen before, but she would probably not exhibit it while we were there...and she didn't. She walked up and down the different floor levels (mats) without problems. So, the PT took her to the mobility room and watched her on stairs and inclines. Apparently her left foot is still lagging a little bit, and that would explain what we see on occasion. She seems to drag her left foot instead of picking it straight up like her right foot. She crawled like that too, her left leg was always behind or dragging...but she always managed to do what she wanted to do. So, we are to do some exercises with her, and one suggestion was taking her swimming...I need to find time to do that more, she loves it so much!!Anyhow, we are going back for assessment again in a few months, because mostly she is fine, they just want to keep an eye on her.

With the OT we talked about the fine motor aspect with Faith. She played with some toys with her and watched her with money and a coin bank. Faith can do everything they want her to do, but not the right way. She has figured out how to get the money in the slot without having to do the pincher grasp, for example. She grips the coin with all her fingers and fiddles until it fits in. Just like with the zippers, she grasps with the whole hand, but she can unzip it. We are going to be going back for a little bit of work and for them to give me some suggestions on how to encourage the proper grasping techniques.

When we started talking about her speech, I was so excited. They asked if she had improved since the last time. Last time she only had about 19 she should have at least 50. I told them that I wasn't sure if she actually had that many words, but she definitely had made progress. She says so many phrases now, each phrase though sounds like one word...thereyougo, howareyou, howyadoin, thankyou...all one word!! But it is so cute and she says them at the right times. She is still signing and I was surprised when she used one of the signs without prompting. She always uses all done and more...but when she wanted them to help her open up a toy, they said "ask for help, use your words" and she signed the proper sign for help!! That took 6-8 months for her to get it!! That was cool!! Anyhow, we will be going back for some speech appointments now, just to see if we can work on getting her caught up a bit more.

Then they asked if there was anything else we were concerned about and then came my emotional frustration!! I didn't cry or anything, but they could sense my concerns...which was nice. I talked about how we just were at the end of knowing how to handle certain situations. Which is hard to admit, after having 4 kids before Faith. I really want to raise her to be socially aware of right and wrong behaviour. I want her to "get it", and I really don't want to be one of those parents who makes an excuse for all behaviours. I know she is 2, I know she is a fifth, I know my other kids were slightly similar. The difference is that, even though there are all these factors, there is also a brain injury that affects these behavioural areas. a parent and as a human being, I have seen others who excuse behaviour because of a disability. "He doesn't know what he is doing", "Oh, she has (fill in the blank) and can't control herself", "They always do this"...while those things may be true, I want to make an effort to get through to Faith. I want to learn how to discipline her and train her in a way that she will "get it". People will say things like "Your other kids were like that" or "My kids did that too" and that is fine. Except that there really is proof of the brain injury. Faith is smart enough to have learned the discipline dance (neat term, you won't find this in a book I am sure:-). She misbehaves or makes a wrong choice, I talk to her and put her in timeout, and she crosses her arms and fakes crying until she thinks the appropriate time to stop is...she dances the dance...but it doesn't sink in at all!!

This post is getting long!! Congrats if you made it this far:-)

I had mentioned that I would like to do social stories with Faith. We were encouraged at our last IDP appt to pick one routine and make the story around that, until she gets it. So, I talked to the SLP and she was thrilled to help me. We decided that we were going to take pictures of Faith doing all the steps and then she said that she will put it all into a book for me!! That is awesome, so sometime in Feb we will get that done. I have a week or so to take the pics and write the "story" and they will help me to tweak it for the book. So cool!!

They are also going to refer us back to the social worker again for some tips on dealing with certain behaviours. They have also referred her to the ECE program that will start in April or May. It is like a pre-preschool program for kids with special needs. They will be followed by their therapists while there and it will give them a little more insight in how to work with her. I am excited about that!! I will need to juggle a few schedules (Pooky's preschool is the same days and times...but I have to stay on site for Faith's preschool) so that will be figured out eventually...We talked about JK (junior kindergarten) and depending what they see in the ECE program, and where Faith is in a year, she may be referred to their specialized JK program.

And again, this is where we are left...the unknown future. We are all working hard to get her to a certain point, but there are definitely those autistic tendencies that we are already seeing, related to the area of her brain that was damaged. They may not be apparent to everyone, and I get it a lot..."she is fine, I don't see anything wrong with her", "autistic? Are you sure?". Yes, I am sure...she has inappropriate social behaviour, one day she will be overly cuddly and then next she will be in the corner in her own little world, she has no fears, isn't aware of danger and doesn't look for approval, gets confused with laughing and crying at appropriate times, high sensory needs, etc...I could go on...I see it everyday, she doesn't behave like this all the time, but enough that I have taken note of. I know people mean well, and that is nice...but I really do know my child and my mommy gut instinct is very much intact and is normally right on...

So, this is where we are at, still in this waiting game, no "real" diagnosis that has a continuum, rather a very "unknown" diagnosis. The unknown continuum, the unknown future, the unknown...I hate the unknown...


  1. I made it to the end. :-)
    Mom are often right with their gut instinct.

  2. I finished too! :-)
    I agree with Cheri- God has given us intuition and instinct and I find 99% of the time mine is right.

  3. I made it too!! :-)

    Mom's are generally right!! Remember that and keep fighting to be heard!!

    You're doing well.