Eli Baffles His Therapist

Today I ask Eli’s speech therapist, have you had other kids like Eli?

Her answer?  No.

Eli CAN articulate he just doesn’t.  Most often he will speak fast with his mouth hardly moving.  I swear if I could record it, slow it down and turn up the volume, I could probably understand him.  When he speaks like that, he does it without thinking just the way you or I talk.  But, when you ask him to say a word clearly he pauses for just a second before he mimics you.

She has found the key to working with Eli.  He will not do structured speech therapy.  He will not do flash cards or pictures no matter how you try to reward him.  She has to play with him and use words while playing.  The major key… an ipad.  He likes playing games, especially trains, on the ipad more than he likes being in control.  Every session he tries to refuse, but he wants the games so much he gives in.  Last Monday, he had one final word to say at the end of the session to get his m&m’s and he would not do it.  He is such a goof ball.

The therapist is very perplexed by his speech problems.  You know he knows everything and he is capable, so why doesn’t he?  She said, “It’s almost like baby talking”.  As a parent of my strange little dude, it’s fun to see someone else understand him and be baffled by him, too!  But when I stop and think about it, a little over a year ago we were working so hard to just get one word and now we get 2 to 4 that we can understand.  He’s coming along, slowly but surely.

What IF it’s not Apraxia?

“Apraxia is a neurological disorder that makes it difficult for the brain to communicate with the mouth how to speak.”

This is my statement I make all the time when introducing Eli to people to explain why he can’t speak.  No, he doesn’t have autism.  No, he’s not stupid.  No, there is nothing wrong with him.  But, what if it’s NOT Apraxia.  THEN, what do I say?

This question comes up because Eli is getting older.  When he was young, we filled out a test with our speech therapist that gave him a high probability of having Apraxia.  His speech therapist now is not sure that he does have it.  According to her, the signs for Apraxia in a child who is speaking is that they say words differently.  When saying elephant they would say  ell-fant, fant, ella, elfan.  Each time being a little different.

Eli speaks very quietly, so it’s hard to tell, but I don’t think he does that.

WHAT does that mean?  He’s just speech delayed?  Why?  As a parent, I so want to have a reason and a title to go with it.  Because, somehow that justifies his difficulty and makes it acceptable in my mind.  Without a title, without a reason I have to accept the fact that he’s behind for no reason?  He’s a little boy genius in so many ways.  He can navigate where to drive and knows when you aren’t going where he wants to go.  He can play computer games with his much older brothers and keep up.  He surprises them!

So what is wrong with my little boy?

We haven’t ruled out Apraxia completely but there is now the questions and the loss of security I found in the diagnosis.  In the long run, I suppose this really changes nothing.  But, in the short run a mother likes to freak a little, just inside my head.

Put an ad in the newspaper…

Shout it from the roof tops.  Gotta post a BLOG!!

I am in shock.  Can it be that my temper tantrum throwing little monster grew up a little today?   No, he’s not really that bad, but close.

Eli LOVES playing on the computer.  Everyone in our family has a computer but Eli.  If you have kept count, that is 9 computers.  We home school, so the kids get one with their online schooling.  There is a lot of time spent on computers here.  Eli is cRaZy good a working a computer, too.  He can turn it on, use the laptop mouse pad, go on the internet, find a game site called Roblox that my kids love and play the game for hours.

Yes, I am the bad mommy who will lets her kid play on the computer for hours if it will keep him happy.  At least for a week or two, until I start feeling bad and do something about it.  Well, today was that day.  I decided enough was enough.  It was time for me to deal with Eli’s addiction.  You would think the boy had been shot the way he acts when you pry his little hands and physically pull him off the computer.

I started the day making him stay completely out of the room where the kids were doing school.  That was bad.  Then he played after lunch, and we ripped him off after lunch break.  Lastly, tonight I told him he could go play IF he would not cry when I told him he had to get off.  I had him say, yes Mommy before he could play.  When I told him to get off, he did.  No fuss, no draggin, nothing!

Then there is this other issue of, I let him win and gave up on putting him to bed with the other young children.  He stayed up till he passed out.  He’s so stubborn it wasn’t worth the fight.  Yesterday, I put an end to that, too.  I made him go to bed with his brother, who carried him to bed.  Tonight, I said it was bed time and he went.  Just like that.  I’m still in shock.  Who replaced my little monster with this grown up little boy?

Isn’t that the way it always is in parenting?  Just when you think you can’t do this one more minute, they suddenly change.  Either they sense that their life is about to end or God steps in and performs a miracle because He sees we have suddenly had more than we can bare.  Whichever, I am a happy Mom tonight.

The “SIGNS” of 3

After having a bazillion kids, you would think that I wouldn’t be surprised by something I’ve seen happen over and over, but I am.  I sometimes wonder if there’s something in the brain that magically goes off every time your child gets a year older.  Such as a 3 year old that all of a sudden stops crying when he turns 4, an 11 year old who stops finding the joy of helping mom when she turns 12 or a 15 year old who is ready to be an adult when she turns 16.   All this to say Eli turned 3, and with this new age has come a new willingness to try signing.

Here Eli is signing Daddy.  He is very happy to practice signing with Mommy.  The words he has started with are please, Mommy, Daddy, cheese, drink and train.  I say that he is happy to sign for Mommy because my grumpy little monster has not completely vanished.  If one of the children or Daddy asks him to sign and he doesn’t feel like it, it’s best to stop immediately or run for cover.  I’m not sure how much damage a 3 year old could do but I’m pretty sure Eli would be most likely to find out.

Here is an update on the rest of Eli’s therapy training.  We decided to wait 3 weeks for the LEAPS program to start, rather than try a new therapist.  His first class is this afternoon.  If all goes well, he will do LEAPS twice a week, then if he qualifies for SSI we will also add in private therapy as well.  His progress on speaking is still very slow so I am working on getting him all the help we can.

LEAPing for JoY!!

If you follow all of these blogs, then you will know that we are in search of a new speech therapist.  Today, we received super exciting news!

A few months ago I wrote about Eli visiting the LEAPS program at OU.  He was then put on a waiting list.  Today the phone call came and Eli starts the LEAPS program in 3 weeks.

Eli will attend class twice a week for 3 hours a class.  In his class he will have play time with student speech therapists, constantly overseen by a speech therapy instructor.  He will have circle time, lead by a certified teacher, with 6 or 7 other students, in which they will do pre k learning activities.  Then they will have speech therapy time and I’m not sure what else since we did not stay for that part of the class.  The classes are almost 1 teacher per kid.  That might not be accurate but it did seem that way when we visited.

I have great hopes that this will be what Eli needs. 

When speaking to the director of the program today she said what I have been thinking since I have been researching apraxia.  One therapy session a week is not enough for apraxia kids.  They should be in therapy four times a week.  Unfortunately, insurance gets involved and hoops have to be jumped through.  We are going to see how Eli does with just the LEAPS classes.  There is a possibility that he will need to add an additional once a week therapy session as well.  For apraxia parents reading this, go with your instincts and do what it takes to get more than once a week.  I have been watching my son get further and further behind his peers this last few months when he should be progressing.

Now here comes the HARD part.  Eli has to be potty trained or I have to stay for the 3 hours.  I don’t mind staying, but realistically I am a mom of 8 and that may not always be possible.  So, AHHHGGG, the thing I dread more than anything MUST happen.  I honestly would rather wait till they can take the diaper off and change themselves than potty train.  I want to say early, but he is now 3 and it really probably is time.  But, this child is not easy to sway to do things he doesn’t want to.  So, if I don’t post for a few months send help!  He will probably have won some enormous battle that might put my life/sanity at risk.  If I haven’t said it clearly enough, I HATE POTTY TRAINING!!!!

Pinterest Speech Therapy?

Ok, let’s get real.  You and I both know that no one needs another reason to waste time on Pinterest.  It’s true.  It is a collasal waste of my time.  But, somehow it seems to be this guilt free cyber form of shopping that my husband can’t say no to.  So I do it.  I’m not proud, but there it is.

Now you may have read the title and thought, wow, what a great mom.  She’s using pinterest to find new forms of speech therapy.  I totally intend on doing that some time, but that is not what this post is about. 

It’s about Eli finding words on Pinterest.  As I scroll through the pages, Eli will often come up and stand beside me.  We will talk about the things he sees and he will say some of those things.  More popular and most often it will be kitty, doggie, puppy, candy or cake.   Tonight as we play this game Eli stunned me with two words I didn’t even know he knew.

A picture goes by of a woman leaning over a bathroom counter putting make up on in barely there panties and Eli says, “butt”.  I get excited and say to my husband sitting very near to me, “Did you hear that?  He said BUTT!”  Of course he doesn’t, nobody does.  But I swear he said it.

Then a few minutes later a cowboy boot comes up and he says, “boot”.  What the….??  I have to admit it is fun to be continually surprised by his constantly growing vocabulary.  Last night Eli said Marsha-meh-woh.  The thing with apraxia is you never know when the words are actually going to stick and he will be able to say them whenever he wants to or if they will be one of his “losing words”.  Words that happen only once.

Whichever, they are I choose to be thrilled with them and cherish those moments for all of the fun they are.  To really understand, if you are a parent, imagine those first few words you child said and how exciting it was.  It’s like we get to relive that moment daily.

The Potty Monster…

I would rather run naked through a stadium of people, eat hissing cockroaches and be a permanent contestant on fear factor than potty train.  In my opinion it is the worst part of parenting, and I have given birth eight times, six without drugs.  I would much rather do that again than potty train.

I’m not a first time mom, in fact in a country where 2 children are the average I’m sort of an expert.  It’s when you start to feel confident in life that it seems like God steps in and says here learn a new one.  So, Eli is my new thing to learn.

Why am I even thinking of training a two year old?  This is what I keep thinking to myself.  It has been my rule to wait until they are very VERY ready, which usually happens when they are three not two.  I was blessed to have one child potty train before he was two in one day.  The more kids I had, the more I learned what a miracle that was.

There are two reasons why.  One, Eli hates diaper changes.  Every time I tell him, let’s change your diaper, he runs away yelling, “No, chang-uh diaper!”  It’s the only three word sentence he never forgets.  The second reason is the LEAPS program that he is supposed to be entering in August.  They require them to be potty trained or a parent must stay for the entire class.  I don’t mind staying, but the crazy life of running eight kids around makes that almost impossible.

So, here I am.  I let Eli go naked.  He grabs a diaper and throws it at me and yells, “DIAPER” with the other hand covering his butt.  I try to explain that he is going to be a big boy and go potty.  We go to bathroom, I sit on the side of the tub and put the stool in front of the potty.  None of this calms Eli down, in fact it makes him angrier.  He is yelling/crying.  Then I say the magic words, “I know the potty is scary isn’t it?”  He stops screaming, gives me the saddest eyes and opens his arms for a hug.

It’s one of those moments that melts a mothers heart.  It tears at me to realize that even I think that my son doesn’t understand because he can’t speak.  This parenting a child that cannot communicate is hard.  I am constantly telling others that he is smart he just can’t talk, but to realize that I myself have let him down, hurts.  I know he IS smart and I know he understands a lot, but I don’t know how much and until he can communicate I don’t know how I ever will.

With that moment of Eli being scared I let the potty training go for another day and another potty.  For him I will use the dreaded toddler potty, that I detest cleaning.  I will also work on reminding myself that Eli is every bit as smart as I tell people he is.

Even a 2 year old can fight hunger…

Eli joined in his sister’s Walk 4 Hunger this weekend.

He may only be 2 but he is not to young to be a part of a community raising awareness to fight hunger.  His big sister Elizabeth and three of her friends from school ran this event.  They had a walk along with an ambulance and police car tour, zumba, ballons, face painting and coloring.

Eli began the morning with coloring, as you can see he is a very talented artist.  Then he watched the zumba dancing.  I really hoped he would participate, but instead he stood there and gazed at us with a look of fascination and repulsion that only a small child can give.

How does Eli fight hunger? By stuffing his face with free chocolate!

After zumba everyone set out to walk.  That’s him sitting on Daddy’s shoulders at the front of the group.  For the first of the morning Eli had been completely silent.  However, that changed when we came upon a group of turtles by a pond. “Look tuttoh, tuttoh”  He loved the turtles.

When the walk was over he took a tour of an ambulance, which for Eli means, as his brothers and sisters sat and listened to the paramedic, he kept diving into a bowl of chocolate. Eating even the wrapper if Mommy wouldn’t help him.  After the ambulance Eli went and checked out the police car which made lots of great sounds.  He practically ran from it as fast as he could but then stopped and stared at it with fascination.  Two year olds are so funny.  You think they hate it and then they won’t leave it.

Eli and his apraxia control issues found a real problem with balloons.  He refused to let me tie a balloon on his arm.  He wanted to hold it.  So you can guess how that went, he got so mad when I tied it on that I took it off and handed it to him.  By that point he’s to mad to do anything but throw it.  So away it went.  He cried but was quickly appeased by watching his balloon float away.  The stupid thing on my part is that I thought he learned from the first balloon, but NO.  We went through the entire scene again.  Oh, well at least I learned the second time.

Searching for Thine Words at the Fair…

If the unusual can inspire Eli to find words than the Medieval Fair in Norman, Oklahoma is the place to go.

Eli hopped in the wagon and away we went to see the fun and excitement.  There was singing and dancing as we ate our lunch.  Eli was truly speechless as they went on and on and on about the rules of love.  25 rules to be exact.  In hind site, my husband and I agree we should have left at 10.

There were many animals for Eli’s enjoyment, and elephant, camels, dogs, camels and snakes. Right next to the singing were birds and Eli said, “birdy”. 

“Look horsey!”  Eli has truly entered the world of two word sentences!  They usually begin with look, but I celebrate every language milestone.

The fair was full of excitement as well.  There was a true jousting tournament where a man was knocked off his horse in full armour, real sword fighting with protective suits on and a tent full of drummers.  Eli was invited to join in on the drumming.  They gave him a tiny drum and he held it as they played.  He didn’t say a word. I have found out that, even though these new situations may make him silent at the time, they do help him find words later.  As we look at the pictures and as I blog about them we talk about what he saw and then he has the courage and excitement to try the new words.  Today, as we go through the pictures most of what Eli says is jibberish.  This is not discouraging to me because 6 months ago he would not have made a sound.

We finished our adventure with souvenir shopping.  My sons joined in together and bought a sword, care of my husband.  I do not understand this purchase and have been assured it will be kept in a safe place far from the reach of little hands.  My teen girls bought a scarf with coins and a head piece. The little girls and Eli bought fur tails.  Which he spent the rest of the night parading around the house and shaking his tail.

We had a wonderful day and found some words that I’m sure he will soon forget.  But, perhaps next year when we go back to the fair he will be able to not only find the words but add them to his vocabulary. 

The days when you wish for “normal”…

I would not be honest with you, if I didn’t say that being a parent gets old some days.  I think every parent knows what I mean, especially the stay at home parents where it is a 24 hours seven days a week job.  I am the proud owner of teenagers, so my life is considerably easier than the years when it was just me and the little bitties.  I have the luxury of grocery shopping without children or taking time to go for a run. Even though, I do have the ability to leave the little ones at home, I am usually leaving to run an errand for someone in the family.  It’s really just a trade of what I am doing with my time.

The same issue holds true for all day every day speech therapy.  There are just days when I wish Eli could just be a normal two year old.  That I could let him play without thinking how will this help his vocabulary?  How can we use this outing to search for words?  What words will we work on at dinner, lunch and breakfast?  How will this toy bring new words for Eli?  I remember when I used to buy a toy because it looked fun not because I could use it for building a little guys vocabulary.

What do I do on those days, when I wish for easy?

Today is one of those days, but, the love of my two year old forces me to find a way even on these days.

First, time to breath on those days.  Let it go, refresh.  One day will not destroy a lifetime of speech therapy days to come. So, I step back and let the siblings, Noah and Gideon, take a turn at speech therapy.  I take out some of his speech therapy toys (play dough, dinosaurs, whistle) and tell them to keep track of what he says for me.  They love this idea and get a pencil out and start writing words:  Dophin, ducky, horsey, gaffe, elphant, paydough, dinosaur, tomp.  The boys had so much fun with this that I am surprised I didn’t think of it sooner.  We will definitely be adding it to Eli’s routine.