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?  : )

Bubbles

One of the things we are working with Brady on is being more aware of his mouth and lips and tongue.  His ST blows bubbles with him and touchs his mouth with them.  Through these bubbles she explained she is also working on sensory issues as well as his verbal development.  He also started hitting his chest and saying "me" when he wanted a turn with the bubble wand and blowing bubbles.  Bubbles have been a good thing here. 

We have a bubble blower.  I like to set it up and start it blowing bubbles outside for the kids to chase and also when they are playing on the back porch sometimes too. 

Yesterday Brady got up and gestured to the back porch and said, "bubble".  oh.my.goodness.  I about fell over.  I excitedly repeated "bubble" to him and commended him for "good talking".  I got the bubble blower and brought it inside to blow bubbles for him.  Unfortunately the bubble blower had passed away sometime in the night.  I will be buying a new one.  If he wants bubbles and will ask me for bubbles....dude we will get him bubbles.  :)

Me!

So yesterday was Brady's appt. with the SLP, "S".

I took the girls to a friends house which proceeded to throw Brady into a terrible meltdown. It was awful. We got back home, they are only about 5 minutes away, and he cried until S showed up. I was worried he would not be able to get past it and be able to have his therapy but he did.

What an awesome job he did too! He was being very social with her. Some of the things he did that just excited the hell out of me...
1. he was taking turns sharing bubbles with S. Brady would hold the wand out for her to blow a bubble and then he would just giggle and giggle at her attempt. This is awesome stuff. I started crying watching him.
2. tear jerker number two...in the process of them taking turns she started modeling for him to touch his chest and say "me" when asked who wanted a turn. He did it a few times with prompting and then started to spontaneously answer that way. I seriously started to cry. I was so happy to see and hear him trying and learning. His me was not super perfect but damn he sure was trying.

Overall it was a great session and I was thrilled with him. He was trying. and he was just Brady and man I love that kid!

I did talk to her some about his sensory issues. Here is the deal...he has started toe walking. every few days or so. He also spins and will stand with his head on the ground and look at things upside down. S has noticed he is very aversive to having his mouth touched or hands near his face in general and there are some other sensory red flags. The oh-so-tricky thing is that ASD-sensory issues-speech delays-neuro symptoms-hearing and such...all of these things are linked. in a complicated way. At his age it is hard to say for sure if it is ASD, sensory integration problems, dyspraxia or other language disorders. again...this is my understanding.

I asked S about getting him into OT and she said it could be helpful, it is hard to predict. I am not too sure that our insurance would cover it without a diagnosis and we have to wait until June to get into the University for testing so we will wait on the OT until then.

The tough part of the ST is the wait. Brady saying "me" is huge for him. wait..not just saying "me" but understanding that he is "me", that is the huge part. Overall though it is a small step of a long journey. I am trying my best to just enjoy this journey, as I try with any other journey I am on, but there are times when I cannot help but want to speed things up and just hear him "talk". Soon enough I hope...soon enough.

So here is a funny for you guys...my husband is king of teaching the kids mildly inapprpriate things. Mostly these things are not what I would teach but they are funny. So this morning I go in to change diapers and he picks up the book 101 Dalmations. He points to the female character and asks Lucey what that is. I am expecting her to say dog or maybe even dalmation. nope.
"Beach" she says. it takes me a minute. I think about it and then shoot Brad a mildly scathing look.
"Did you teach her to call that dog a 'bitch'?" I ask him under my breath.
He sheepishly grins at me, the look that one makes when they know they are "in trouble", and says, "I told her that was a bitch and that one(the male) is a stud."

I wanted to be mad but first off...those terms are right, not what I would teach my 2 year old necessarily, but accurate. Secondly it was beyond adorable to hear her say it.

Right now she has no idea what she is saying and it will now fade from memory. I think for both of us to push her verbal skills to their limits is just where we are at. Making sure she is ok where she is since B is working so hard to catch up.

ah...a glimpse of the household in which we live.

the game plan

So we are going to wait to get Brady evaluated. The EI people will need to look at his progress come June so we will go ahead and schedule testing at the University for that time frame just in case we still need to have him looked at.

For the next month we have appts. scheduled once a week to work with him. Case worker and SLP trading weeks. Tomorrow is the case worker, L. I will be glad to see her and again get some more tips and ideas for working with him.

He was trying to say Elmo earlier. It was adorable. Lucey of course loves "melmo" herself and has been saying that forever so he was repeating her when she would say it. But he was pointing at him so I am gonna count it as a try. :)

I have also been sitting with him and doing some flash cards. Just simple pictures for now. Nothing too detailed because I don't want to complicate things for him. showing them to him, naming them and then trying to have him point them out to me when I have them grouped into threes. I am trying to mimic some of the stuff that I have seen the workers do when they are here.

Josey had gymnastics this morning. It is her second session and she really is doing well. I just love to watch her. The teacher told her today that she was doing so well maybe she could just teach the class for her. Josey could not have smiled any bigger. She came running over to tell me all about it. She was bursting she was so proud of herself.

After that we went to a new playgroup for Multiples. It was fun to have 4 sets of twins in one room with older siblings and one pregnant mom too. There was one set of older twins, L and B, another set of 2 yo and 10 week old babies. Oh so cute. loved them. Brady was all about sitting beside one of the little babies. She was smiling at Brady. it was so precious.

ok....everyone is in bed. it is quiet and I am hungry because I think I have yet to eat dinner so I am going to go find a snack and enjoy Dinner Impossible on Food Network.

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.

ahhh...my children

this post is from a previous blog, posted yesterday(March3,2010)
more on that in another March 4 post to come

I am a mom therefore I worry. or something like that.
I love my children. all three of them. they are the joy and the frustration of my days. They are my job.

Josey will be starting Kindergarten next fall. I am not sure why I use capital letters on Kindergarten except that it feels like that…it feels all proper and important. And big. Really really big. It has been a fast 5 years. She is doing well. Loving preschool and the friends she makes there. I just got a reminder call from the University where she had her cranio surgery at 4 months old and it is time for a re-check. in the earlier days I was calling to schedule these appts. and this time I was a little surprised. She is doing so well that some days you can almost forget she ever had her skull reconstructed so young. Almost…quite a bit happened around that time and although she is healed and well I can seldom talk about the surgery without crying. Not all out sobbing or anything. Just tears of a mom who feels incredibly lucky to have come through something like that with her kiddo intact and healthy. Sometimes I wonder if all that oxygen her brain was exposed to did something to it…like accelerate growth. She is smarter than I am I think on some days.

Lucey…techinically our second born since she was the first twin out of the gate. She is only a minute older than her brother but I am fairly certain that will be a detail she will not let him forget as they get older. She is talking all.the.time. these days. She ask about things. Lets us know when she “toots” or “poops”(for the most part). She loves to play with her big sister. She still sleeps with a paci, known as “paa-ie”, but knows when she gets up she needs to hand it over. Lucey eats just about anything and everything. No exaggeration…no lie. She is an awesome eater. She loves our boxer Oscar and lays with him while he is sleeping. The cat is also intriguing to her, she loves the sounds he makes when she pulls his tail. *small chuckle* We are working on teaching nice touches.

Brady…my youngest and only boy. ahh Brady. I was so scared to have a little boy. I did not think I would know what to do with him. I am here to tell you that little guy came out holding my heart in his hands. I love my girls but there is just something different about a boy and a mom. He is all over this house these days. He is active and moving. He LOVES cars. LOVES them. The movie, the toys…anything with wheels. He has a couple larger ones that he leans on and just pushes all over the house. Full of energy and love.

It is him I am worried about right now. It is Brady that consumes my thoughts and fears right now. He is not talking. Please understand when I say not talking I mean it literally. I don’t mean that he is hard to understand or that he is not talking as much as other kids. I don’t mean that he does not want to talk and so is choosing to be silent or that he gets everything handed to him so he does not have to talk. He really does not seem to be able to form words.

I called Early Intervention in our area 2 weeks ago. We met with them for the first time last Tuesday, Feb 23. The case worker was very nice and spent about an hour and a half here that morning. She did some developmental tests with him to see where he was at, she did say she would score him another time as well to make sure to get a more complete view of him. He scored very low in communication skills; at 27 months he scored at a 16 month level. Have you any idea how hard that is? To hear that your child is almost a year behind where he should be. He was behind in all other areas as well. He basically scored between 16 and 20 months.

A speech language pathologist, SLP, is coming this Friday, March 5, to meet with us and evaluate him as well. Where we go from there I am not real sure. She also bringing a test that will alert us to any red flags of autism spectrum disorders, ASD. again…kind of scary. I will blog more about my own thoughts on my other blog.

I am eager to meet with these professionals and move on to whatever the next steps are. I am so happy to have Brad to walk this with me. He is a wonderful person to lean on. I am grateful to be able to check things with him as well and watch him watching Brady. I know that whatever comes of all this we can walk this together. We always have been able to walk these tough roads together.

Well…smells like I need to get back to work. The girls have been playing for a little bit after getting up from nap and I believe that Lucey has made a lovely package for me in her diaper…oh the joys.