Difficult Days

Yesterday was one....a difficult day.

We had plans to go to a hot air balloon festival in a town a couple hours away.  Mother Nature had other ideas.  It was rainy and wet so they cancelled everything early on in the morning.  We hung around the house for a bit and then decided to hit the cheap seats for Toy Story 3. 

We put the littles down for a nap so that they were reasonably rested before the movie.  That went ok.  They took their naps and we woke them a little early so we could get going.  We got to the movie just at start time so we could avoid sitting in the theater for too long beforehand.  We got popcorn and drinks and headed on in.  Got seats and sat to get watching.  The movie was awesome, I cried like a baby at the end, and the kids all did pretty well.  The littles got up some and wandered in between Brad and I but overall they were awesome.  I had some pretty bad times at movies with Josey when she was little so I was terribly apprehensive about taking all three kids.  It really was a great experience though.

Afterwards we had a couple of errands to run.  Needed to get new trailer lights for the boat trailer, a few gluten free things from the store and also stopped to look at getting a battery for the kids ride on John Deere play tractor.  Here is where things went wrong.

We got in the van after the movie and all was ok.  The kids had run around the lobby of the movie theater a little afterwards and each got to ride one machine ride.  We walked to the van talking about the movie and how we all enjoyed it. 

We stopped at a local hardware store to see if they carried the lights that Brad needed.  They were a no-go.  Kids were ok so far.  Then on the way out Brady saw a car-cart that he had to get into.  We let him sit in it and then told him it was time to go.  Ok.  crisis averted.  he was ok with that.  We get outside and I tell him he has to hold my hand to cross the street and get to the van and that was not ok with him.  Screaming and kicking, doing the limp thing while I am holding his hand, we make our way to the car.  I let go of his hand and let him walk the rest of the safe way to the car.  He refuses to get in on my side of the van, where his seat is, and walks to the other side.  ok.  fine.  I go to put him in his seat and he loses it.  screaming and hitting and yelling.  I get him in his seat, trying to calmly talk to him and let him know that his behavior is not acceptable but he does have to be buckled into his seat. 

We head to the next place.  He is saying something that sounds like "outside" but we are not 100% sure that is the case.  Again with the talking calmly letting him know that we will go outside when we stop again but it is just not cutting it.  He is screaming a scream that defies explanation.  There are no words to do the noise justice.  It is painful to the ears and grates on the nerves horrifically.  We get to the battery store and take everyone in.  He sits down outside the van to refuse to go in but has stopped screaming.  I give him a bear hug, something I know can sometimes calm him, and then we go in to the store.  He calms briefly to  wander the store.  We find out what we need to know and head on out.

We get back in the van and again he begins screaming the death scream.  He is pissed off about something.  I am not sure what. This happens all the way to the next location.  We needed to hit the grocery store so that I could get some gluten free things.  Things went ok at the store.  Brad followed the kids around so that they could walk and not be put in the cart.  Brady does not tolerate the cart well anyway.  I shopped to get some specific chewy things.  Natural gum that comes in very small pieces, think square peas, some fruit leather and some gummy bears.  All gluten free with natural sweeteners and colors.  We try to corral the kids and again things go wrong.  It was about here that my memory gets fuzzy because I too began to melt down. 

We got back to the van and gave the kids a pack of the gummy bears.  Brady settles down and goes to chewing like a mad man.  Obviously all the kids got quiet with their snacks but his seemed different.  We ran the other errand we had and then made it home ok.  All in one piece and with little to no upset due to having the chewy items.  Brady got a piece of the gum on the way home too.  and chewed and chewed and chewed it all the way home.  I suppose one could pose the argument that he was quiet and calm since he had something in his mouth but I disagree that it was just because his mouth was occupied.  I cannot quite articulate it but I think it is different for him.

After we got home things got a little crazy.  Josey and Lucey were tired and hungry too.  Josey threw a fit once we got home but settled reasonably quickly once reasoned with.  I made the kids dinner.  Josey and Lucey sat down and ate.  They were able to transition to eating with no problems.  Brady could not sit still.  He would eat a bite then get up and run around.  Then he would run to where Brad was sitting and would mess with him.  He would go back and sit down, take a bite and then get right back up and run around like his pants were on fire messing with everyone and everything.  He could not settle.

I finally got him to eat by sitting next to him and holding his hand while he ate.  We got jammies on and put the kids to bed.  He got up about 30 minutes later and laid with Daddy on the couch for a bit then went back to bed.  He got up at 4:30 this morning and told me he was awake.  I said absolutely not and had him crawl into bed with me. 

The thing about Brady is that he does not sleep alone, whether in bed with me or not.  He has his beloved pillow, a moose, a small stuffed chihuahua, a Matchbox truck, a Lightening McQueen and his "chewy".  Yep...pretty extensive list but if it is not all there he will not sleep.  I ended up sleeping with my hand over my head holding onto everything except the pillow and the moose.  We did get a couple more hours though. 

Seems like the nights after the bad days are not good sleeping nights for him.  I wanted to describe our day yesterday for a few reasons.  1.) I needed to decompress from it because I was in tears last night after it was all said and done. 2.) I want a record of these events and days for reference. 3.) I want to be able to share it in general so that others know what I am talking about whenever I do actually talk about it.

It has taken me a while to get this written so I am going to post it and go to the store with the girls.  Brady and Brad are fishing.  He was thrilled to get to go with Daddy today.  Love seeing the smile on his face when he leaves. 

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?  : )

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.