Bye Bye Cheese

This is gonna be a quickie but I had to get it down somewhere.

We are taking casein away again.  This is the protein found in dairy.  It was soooo nice to have it back but behaviors that had been gone are back in the B-man and I am just wondering if they will go away again with no casein.

To document so that I can keep track....
kicking, hitting, spitting, fits, yelling, grunting, throwing, aggression in general. 
I have also noticed more spinning, toe walking and other behaviors that indicate his need to stimulate.  He has been running full force into us at random times as well.  Not wanting to cooperate with his brushing therapy as well.  This of course may have nothing to do with the casein but it is just part of his general attitude issues.

He is still there underneath it all.  That sweet boy that I know and love but lately he has been pushing me to tears again with his aggression.  With me and with his sisters.  He is just not himself. 

I was reading in a book the other day on SPD and was again reminded that it really can factor in to these kiddos behaviors.  While it may be a pain in the ass for me to start cooking without again it is definitely worth a try if it will truly help him.

After this weekend please send small random slices of pizza to me.  Oh and large chunks of Havarti cheese also...mmmm.

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. 

A good day in the neighborhood

So today is starting off good, albeit early.  It is Wednesday and we have nothing going on until after school.  Josey has a dentist appt. and then we will have dinner with some friends who are watching the littles for me while Josey is at the dentist.

I am still trying to get a handle on, or feel like I even understand, Brady's SPD(sensory processing disorder).  It is a daily struggle to try to stay a step ahead of him and what he may need.  Or to just curb any meltdowns or problems before they happen.  So the occupational therapist thought that perhaps Brady could benefit from this technique called "brushing" or the Wilbarger Protocol.   Basically I have a surgical scrub brush, which has very soft flexible bristles, and am to use that to apply deep pressure on his arms, back and legs.  Then to do joint compressions for counts of ten.  After that we do "heavy play".  This is anything from wheelbarrows, push-ups(on wall or with me) or pushing totes or laundry baskets with some heavier contents around.  He will also push his "brushing stool" around or take books from one place to another.  There are various things we can do for the heavy play.  We have started this therapy. It is recommended that it be done every 2 hours for about 2-3 weeks.  After that the frequency can decrease to a few times a day with definite use before an activity that may be difficult for him to get through.  He seems to like it so far, was doing it to himself not long after our first time this morning, so we shall see how things go.

Josey is at school and the littles are doing their thing.  I am going to get some breakfast and then fold some clothes I think.  you know...fun stuff like that.

The short story

Brady had his evaluation today at the University.
I am putting the short story here so that I can quickly pass the info along to everyone who is kind enough to be wondering.  We are all tired.  The girls missed us and are beat after playing with friends all day.  Brady and I took a short nap before we picked the girls up but are still beat.  Brad is back at work but I am pretty sure he too is beat. The day was a long and exhausting one with a positive ending however.


We left with a diagnosis of severe speech delay and sensory processing disorder. They were reluctant to give him an ASD diagnosis. They felt that had they seen him a few months ago that probably would have been the case but he seems to be making great strides in his pretend play and socialization and various other areas of concern so they really feel that with continued work he will catch up. They will see him again in a year just to make sure he is still on track.

I am happy with this information. Funny because it is pretty much what thought/hoped for in some ways. Yes there are areas of concern but he really seems to be doing better so let's just keep doing what we are doing and watch to make sure he keeps it up.

Thanks for all the thoughts....it means a lot.  I have to go start dinner now...the natives are restless.  I will be back sometime soon for a little more on the story.

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?  : )

Holy Crap!

(my apologies because I think this post title was used by a friend for the same reason but I know you will understand why I also used it...)

Brady just said "apple" while using the sign. 
As if this was not enough he just put together, through sign and words, "apple, more, please", in that order.  Using BOTH the signs AND the words.  and he was pretty darn clear with all those words as well.

I absolutely cried hearing that from him.  We have gone through almost 4 apples in the process as well.  lol  Kind of like the bubbles...if he wants apples he will get apples.  I am just over the moon right now.

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.  :)

It is April!

We are doing well here...loving the warm up in our weather.  It is sooo nice to be able to go outside and play.  To be able to open all the windows and enjoy the fresh air. 

Brady is coming along.  He has added "uhh-ey"(uppy) when he wants us to pick him up and "sooes" for shoes.  It is awesome that he is using uppy spontaneously when he wants us to pick him up, in the right context and all.  He is also using "feesh"(fish) and baby more often. 
So his words now are:
mom
daddy
sissy
no
uppy
shoes
fish
drink
night
bye
baby
eat
cheese
more
please
I think that is it.  I will add to this when I remember more.

Lucey is all kinds of funny.  She is talking up a storm and it is always amusing.  She pottied in the potty for the first time last week.  It was a one time thing.  lol  That is ok.  Josey did it all in her own time and I am sure that Lucey and Brady will too.  She is definitely her own person with her own sweet personality.  She has no problem holding her own with Brady and Josey either.  She is a snuggler for sure and still prefers to be touched while trying to go to sleep.  Her and I often spend the last half of the night sleeping together. 

Josey is growing like a weed.  I put a 5T dress on her the other day, I swear it fit fine when she first got it, and it was a little short.  Good thing I prefer shorts under all dresses...this one needed it.  She is a sweet kiddo and is always making drawings and cards for her friends and family.  She is going to be starting some summer gymnastics this year.  She took a couple of short sessions at the Y and loved it.  She seems to have a knack for it and since she enjoys it I figured why not.  Next week she starts another season of spring soccer.  I am her coach this time and I think we will have fun!  I will definitely update on how that goes. 

Overall we are busy and happy and having fun these days.  Happy for spring and loving the warmer weather.  It is the day before Easter and tomorrow we will be having an Easter meal and egg hunt with some good friends.  Next week we have a shower for my brother in law who will be getting married in early May.  This time next month we will be in sunny Florida for his wedding.  Looking forward to that!  Brad is best man and Brady will be the ring bearer.  Looking forward to seeing my guys dressed up and looking great!

Pajama Time

So I took a couple of videos last night of both Brady and Lucey.  It was after bathtime so they are fresh and clean and all jammied up.  My favorite.  Brad and Josey were at the library so it was just us.  Lucey was tired and you can tell she is as not as "with it" as Brady but these are still cute.  This is my video brag of Brady pointing out his eyes, nose and mouth.  You can hear him clearly say "hi", "eyes" and "die"(bye) in this video as well as some other vocalizations.  Enjoy!  I know Brad got a kick out of them when he got home.

Eyes, Nose and Mouth...Oh my!

ok...so yesterday was a down day.  I had a headache, I was tired and was having a tough time watching Brady struggle.

I want to turn my view point around today so I thought I would blog about some great news concerning Brady and some funnies from the girls.

Brady has never been able to point out body parts, most specifically his face.  Lucey has been doing this for months.  Many months.  So we have been working with him more.  He has finally been doing it!  YAYYY!  It started by me asking where his eyes were and he would blink them.  Ask him about his nose and he would wrinkle it.  Move to the mouth and he would open it.  Now though he is full on pointing to them.  I am over the moon!  I keep asking the poor kid to show me.  I am sure he is tired of it by now.  He also makes noises with each one.  The only one close enough for others to understand is "eyes" and he says that one pretty spot on.  The nose and mouth need work but he knows where they are so I am gonna take it.  Just watch your eyes because he is none to gentle when showing you where yours are. 

Lucey is exploding with her words and phrases and such lately.  it is amusing to listen to her too because of course she is a little sponge and she picks up on everything she hears.  some of the cute things out of her mouth? "I awake. get drink, snack now?"  When we get somewhere and she has taken off her shoes and socks in her carseat, as has Brady, she looks at me and says, "shoes, socks off.  Bubs too Mom."  and her favorite..."I want uppy."

I am trying my hardest to make sure to celebrate her words as hard as I am working on Brady's.  I suppose for any mom with one child needing some help that balance is a tough one but I think having two the same age sometimes adds to my difficulties.

Josey is all about school and learning.  Which is awesome.  We recently found a website with a camera in an owlhouse 24/7.  She is constantly asking for me to "turn the owl on".  She will sit and watch to see what Molly the owl is doing.  What is she eating.  How many babies have hatched etc. They are studying balls at school.  *giggle giggle*  She is bargaining with me about which of her balls she wants to take.  I think I will have to buckle today and let her take her "princess" one since that is the one she is fixated on. 

Ok...so we have gymnastics this morning, school after that(my turn to carpool) and then Zumba this evening.  so we have a busy day ahead.  off to get it started.

my heart

it is both heart breaking and heart warming to watch Brady try to talk. 

He tries to.  I know he does.  Sometimes he is successful but sometimes...not so much.  Today is just one of those days where listening to him try so hard, listening to him grunt out words that I know mean something to him, is just hard. 

It probably does not help that I have a horrid headache as well.

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.

That darn pillow

Ok...so Brady has a pillow and 2 dogs that are "must haves" in his world. He needs them to sleep and when we leave the house. He carts the pillow around everywhere throughout the day. I decided to wash it the other day, I thought it would be done before naptime. It wasn't! SO with much fussing and fretting he did finally fall asleep. I felt like crap.

I decided to make him a cover for this pillow. My thinking was that then I could just wash the cover and he would always have the pillow this way. it would just be "naked" sometimes. So I sit down at naptime and sew him a pillow cover with some Lightening McQueen fabric I had. dude....Lightening McQueen! Brady loves him. The pillow gets dry and the cover gets made. When he gets up from nap he immediately gets up and starts looking for his pillow. I hand it to him in the new awesome cover. He takes the pillow out of the cover and hugs it like there is no tomorrow. I try putting the pillow in the cover again, thinking he just may not "get it", and he again immediately pulls it out and tosses it aside. Apparently he is not keen on the cover. oh well.

So last night before bed we have his pillow and a moose he likes but cannot find the two dogs. Cannot.find.them.anywhere.at.all. Looked down the stairs, in the drawers, in all the rooms and even in the closet. They are completely MIA. We go to look in the van and then it hits me. We had the windows open all day because it was so beautiful outside and one of our screens is pulled loose in the corner. I look to the right of the door right under window with said screen...and yep. There is a small pile of toys with two little stuffed dogs right there. Stinkers had been tossing toys out the window. No telling who actually did it.

Yesterday Brady's eye started getting goopy and nasty so this morning we marched into the doc office to get it checked. Sure enough...pink eye. So far he is doing ok with it. He even let me put the eye drops in. I hope that good run of luck continues. lol

We got home and sat down to do his flash cards. I took a couple of short videos. I did this partly to keep up with his progress and also because I want to show clearly to others what he sounds like. I like to think when I blog that someone might get something from what I write. Maybe just a laugh, maybe an idea and maybe someone struggling with something similar can find solace in not being "alone" with it. Our quest for help came from me reading a blog that I could relate to that has led to a kinship with another momma that has been invaluable to my sanity. Perhaps I can be that for someone else.

Anyhow...here are a couple of videos of our flash cards this morning. He is turning to Josey to show her the card and "tell" her what is on it. You will note that almost all of his "words" sound the same. Also note that he gets a little "woof" in after choosing the dog. You will also notice Josey hamming it up in the back. Lucey was beside me so she is mostly out of frame...not by her choice I assure you.





I am doing what L told me to with him. Offer the pictures up for him to choose. Then regardless of what he chooses push the correct one forward and then congratulate him. Positive reinforcement no matter what. I get that when a kid has words for things and is choosing not to use them you need to work at "making" the kid to use those words. Brady however has no real words at this point in time so he has to just do the best he can and we reward that.

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.

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.