catch up

I was so determined to keep this blog going and up to date....oops!
We have had a busy busy month.
We took a 10 day trip to FL, continued working with the case worker and ST for Brady, managed play dates with pre-school and other errands of necessity, dealt with a few illnesses and recently toured a farm with Llamas and Great Pyrenees rescue dogs.  It has been a full month. 

Josey graduates from pre-school on Thursday the 27th.  From what I understand there will be graduate caps and tassels....and probably tears.  I am not sad so much that she is graduating but amazed to see her growing before my very eyes.  She is such a sweet thoughtful girl who can also be headstrong and difficult.  I love her fierce independence, or try to anyway since I hope it will serve her well as she gets older and has to be strong enough to maintain her values despite peer pressure.  I know I may sound a little silly but we all know that happens way earlier these days...She starts Kindergarten in the fall and she is thrilled.  She is still the craftiest little thing and almost always makes stuff for friends and family before herself.  I love that about her.

Lucey is growing into a little bit of an attitude.  She is a middle child through and through.  She works to make sure that she gets attention and is heard.  Trust me on that one...she IS heard.  *wink wink*  She loves animals, as do the other kiddos, and when we toured the farm last week she was excited to see the goats, llamas and dogs.  If I could have bottled her giggle and squeals of delight while she played with them I would have.  She is a joy, when she wants to be.  Fits are her latest "thing" and they never cease to frustrate me.  She is loud I tell ya....L-O-U-D! 

Brady is coming along in leaps and bounds.  He is picking up new words here and there.  I think that the GF/CF diet is helping him quite a bit, seems to anyway.   We are meeting with an OT next week to discuss some sensory issues he seems to have, we'll see how that goes.  He was right in there with the girls feeding the goats last week.  Petting the llamas and chasing cats.  He enjoys being outside and is in love with a tractor I bought at a garage sale a year or so ago.  Too bad it does not currently run....we are looking for a new battery for it.  Otherwise he enjoys riding the bajillion other toys we have.  He likes to water the plants too. 
Here is a list of words for him currently.  I will copy and paste his old list and use an asterisk(*) to note new words.  Parentheses( ) indicate how he actually says the word.  I am not sure that this is terribly important except that some words are much more clear these days so I think I like these phonetic notes to compare to later.  Also of note is that some of these words are used and noted during ST or work with the CW but not necessarily used on a day to day basis.
mom
daddy
sissy
no
uppy (ut-ee)
shoes (sooes)
fish (feesh)
drink
night (nigh)
bye (die)
baby
eat
cheese(he does not use this one anymore since he does not get cheese)
more(he is trying so hard to enunciate this word anymore.  it is precious)
please (pease)
cookie* (oo-kie)
butt*
moon* (oon)
bubble*
apple*
car* (ar)
me* ( while pointing to his chest.  it is adorable!)
Oscar* (us-ar) This is our dog's name.
boat*
pillow* (i-ow) Basically pillow without the "p" and the "ll".  He is extremely attached to a pillow.
banana* (na-a)
uh-oh*
bug* (ug) 
sit* (zit)
I think that is it.  I am pretty sure.  His speech is still pretty limited.  He is trying. We will look at his progress again in August and then October and decide what more the AEA can do with/for him at that time.  The two basic choices will be either speech groups, which meet 3 times a month for about half an hour, or 3yo pre-school which would meet Mon-Thurs for 3 hours daily.  We go to the University of Iowa on June 8 for his evaluation with the CDD down there.  Until then we are still working weekly with the case worker or ST on alternating weeks.  He is a very affectionate little guy when he wants to be too.  Every night before going to bed he tells us all "nigh" and gives hugs.

That has us all caught up I am pretty sure.  Later I will upload some pictures to share with you all of our vacation and the farm tour.

Dude...really?!

So this morning I made some cookies for the kiddos.  It was a Jamie Oliver recipe, I will share it on my blog later, and it chilled in the fridge overnight then got cut up and baked this am.  It was a cf/gf recipe and they were pretty yummy.  I made the kids wait until later because obviously I would not let them have cookies for breakfast.

The twins loved them.  Josey too.  I thought they were pretty darn good as well.  anyhow....per instructions from the ST and the CW I obviously make sure that I tell Brady what it is and really draw the word out.

this afternoon after nap he got up...pointed to the table(where the cookies were) and said, "ooo-kee".  Really?!  Seriously?!  I think that is the "longest" word so far that he has spit out.  I cannot help but wonder how much the gf/cf diet is helping him.  He totally said cookie. 

will I ever stop crying with new words from him?  : )

Farts, Poots and nl-o

so first of all...this is about all the kids not just the B-man so I am trying to remember that. :)

Josey is ALL about body parts and functions these days and it is making me insane. literally, completely and totally insane. She is right now chasing her brother and sister down the hall calling herself "Naked the Clown". I shit you not.

She farts, and they are farts(trust me) and laughs. Literally laughs and then most times will sheepishly grin and say " 'scuse me". yeah...I am not sure it still counts if you laugh after you rip one off. She talks about poop. She scratches her butt. She belches like there is no tomorrow as well. Brady and Lucey think she is hi-larious. I think she is a 35 yo hairy man in a wife beater hidden in a precious little 5 yo body.

Lucey is all about the "toots" and "poots" too. Hers however is an obsession I will take since this can only lead to good potty places as she becomes more aware of herself. She tells me when she toots and poots(poop). and will wrinkle her little nose up at it.

So Brady worked with L yesterday. We got a little bucket with a lid and some flash cards to work with. We have him identify the item, mostly by choosing it right now, and then he gets to put it into the bucket through a little slot on the lid. this is awesome fun for him and for Lucey. Josey even gets into it as well.

He said a few things during his session too. She wrote them down for us....words he said or that she caught him trying to say while holding an appropriate picture up were:
duck-"du"
hi
please-"peas"
truck-"uh"
car-"ah"
spoon-"uh"
eat-"eeh"
mom
no
I listed the word and then the sound he makes when he tried to say it. I will make a list of words he uses here soon to add to this. She pointed out that we need to encourage the vocalisations regardless of how they sound. I am working on making sure I don't correct him but guide him and just continue to label the hell out of things. We are also working on the functions of things with these cards.

I was sitting with him and Lucey looking at books and Lucey pointed out "Mel-mo", Elmo, and B immediately looked and said "nl-o" which was his two syllable sound for Elmo. Seriously...I was thrilled. It truly is the little things.

Another goal we have, besides his speech, is that he will understand language and start following 2 step directions. Also showing understanding of concepts such as one, one more, all, big and little. Those types of things.

ok...going to go get dinner heated up. the natives are hungry and need to be fed.

Brady

I am tired. Let me tell you straight up...I am tired. I have looked at the things that were said to me on Friday backwards and forwards and sideways too. I am overloaded with what to do. As a mom, for me anyway, it is always hard to make decisions about my kids because I am consumed with the fear that I will make the wrong decision. In this situation I will tell you that I am not overall a religious person but I do consider myself to be spiritual and I will pray for the faith I need to know that Brady is in good hands...whatever we decide to do.

He was evaluated by the SLP, with the case worker here again, on Friday. He was verbally at about a 15-16 month level. Cognitively, what he understands, was at about 19 months though. While this is still considerably behind where he should be it is good that he understands more than he says. That means we can catch him up, hopefully.

He also failed his MCHAT. This is not a diagnostic test for autism or ASD but it can be indicative of red flags. Failing means he had the red flags that indicate there may be something wrong. wow. I expected it but was still reeling a bit.

At this point in time I think we are going to wait to have him evaluated further. I am going to copy and paste an email I sent to friends for further explanation. sorry but I have not got the energy to type it all out again.

ok. the reason we will probably wait to have him evaluated is that they wonder if the fact that his speech is so delayed perhaps he "looks" worse than he really is. and perhaps some of the other more autistic behaviors are influenced by his lack of communication. does that make sense?

He would have to be evaluated by the university. You have to have an MD diagnose specifically PDD and probably the other conditions as well. I know, from speaking with the U already, that he would be seen by a developmental pediatrician and speech pathologist at the least. He would probably also be seen by a neurologist and potentially have a pysch eval as well.

there are specific therapies for autistic children. We will be working with some of the more troublesome developmental issues with the case worker. They are fine with me having him evaluated. they did not tell me not to. they just said that perhaps if we wait a bit then he may catch on to some of these things without needing the diagnosis. Obviously, as I am sure you can figure out, a diagnosis is a double edged sword. can be good...can be bad.

I think that it seems reasonable, for now, to allow him a couple more months to work on his speech and see where things go. They will reevaluate him in June to see where he is at and whether or not he would qualify for more help after turning three, since that is when EI ends and he would need to be turned over to the school system for early preschool or something of that sort. I will set up appts at the U for June as well. that way if he is not where he needs to be. or if I still have my concerns then we can get him in there to be evaluated.

I will be honest and tell you that for the most part I am ok with this, but part of me wants to whisk him away immediately and get a DX. part of me worries that I am doing him more harm by not getting him right in to get him evaluated....but that part of me is about as big as the part of me that worries about a dx following him around.

If he is on the spectrum he is obviously very high functioning thing is though that he could possibly eventually function high enough to barely register the spectrum if that makes any sense. I had, up until recently, only shared my concerns with Brad. and no one else. not even my mom. because I wondered if perhaps I was over thinking things. but I have had concerns for a few months now. if I see any of his symptoms or behaviors seeming to become worse or more pronounced I will also be getting him in earlier.

again...sorry for just copying and pasting but I am just too tired to try to type it again.

I am keeping a log of odd behaviors and other troubling stuff. I think I will also start trying to get little videos when I can of the things that worry me.

I am hoping that with the SLP and the case worker helping me out we can start to see some improvements even without an immediate diagnosis.

We will also begin feeding him a gluten free diet, which means we are all going GF since Josey is already.

ok....off to play with the littles. I will update my own blog later once the kids are in bed.