Therapy Progression - Speech

Nick's speech is amazing. He is inquisitive and asks about words and why we say different things.
He has the funniest expressions. My favorite right now "I did not see that coming"

He also likes to say bad words. Whisper them really, because he knows they are bad. "What the heck" is the extent of his 'swear words'. And I think that he picked it up from Ninja Turtles (Thanks Raf).
But like I did for the physiotherapy and how far we have come. I want to look at how far Nick has come with his speech.

This is the boy that didn't speak for 2 years.
And I worried and worried. Got him in speech therapy with his sister early, and he just wouldn't speak. He was very happy to just play quietly, watch and listen (and laugh)
It was 18 months before he even started to babble!

(This video is from May 2011)

Katheryn also did speech therapy, and she was Nick's greatest supporter.
There were times that I caught Katheryn coaching Nick to say words "Say Daddy Nick, say da-da-daddy"
Once he started to make sounds you could tell that he was excited to show off! (This video is from July 2011)

Just after Nick turned 2 he would talk, but he wouldn't always answer the question you were asking. Every colour was blue, every number was four. 

And then he finally started to explore his vocabulary (around the same time he got his first wheelchair). And if you watch the video from April 2012 you can hear that attitude and personality that we always knew was in there.

After Nick's words started coming, then it was working on the sounds. But that wasn't really anything new with us. The same sounds Katheryn needed help with, so did Nickolas.

Last year Nick got distracted too easily in group speech therapy. He was quiet and he was shy.

Speech therapy progression showed what we already knew. He is getting more comfortable and overcoming at least part of his shyness. And he wants to work on his sounds.

L is a big one. Leo Leads. And you can correct him, he will try again to make the right sound. He wants to speak well.

Now he sings, he has favorite songs. This is a video of his favorite song "R-E-D red"

We have made up some other songs, but this one is his favorite, and he will sing it LOUDLY, if he sees anything in the song (i.e. firetrucks).

And recently he has an O-R-A-N-G-E song (which of course is helping with his spelling as well)

When Nick was 18 months old and I worried so much about his language, I had a number of fellow parents (of older kids) who told me it will come. It was really hard to believe them at the time!

Ninja Turtles and Speech Therapy

Who knew that Ninja Turtles can have such a great impact on speech.

Nick has been taking speech therapy to help with a number of letter sounds.
Remember that this is the boy that didn't speak more than 10 words until he was 2 years old.
While Nick's speech did explode (around the time he got his first wheelchair), he has consistently had difficulties with specific sounds.

He really doesn't want to practice sounds.
"I already did that"

The big ones have been L and K sounds.
We've been looking at ways to get Nick to continue to work on sounds without getting frustrated.

Leonardo Loves to Lead
Let's go!

"K"owabunga!
MicKey
ChucKs
BooyaKasha

I talked to his speech therapist from last year and she said how well Nick is doing and just spontaneously making the right sounds.

I guess, like everything, Nick has decided for himself what he wants to do, and so he's doing it

Happy Talk

In all the excitement before our vacation I forgot to blog about our speech reassessment.

Nickolas did great!!!

We played bunny bowling - which he loved, of course!
And he talked and talked and talked.

Even his pronunciation right now is good. We just have to continue to work with him on the things we are working with Katheryn. Only Nickolas is age appropriate to be working on it (Katheryn is not).
Speech with Nickolas is one thing right now that I feel we have a good handle on.

He was not discharged at this time from speech. But maybe in 6 months when he is reassessed? He'll age out in 18 months anyways (like Katheryn is going to do within the year).

Sabrina (our S/L) didn't re-test him, she said that if he did the exact same as he did on his test last time he would still be age appropriate!
If I had heard this one year ago I'm not sure I would have believed it!
How fast he has caught up with his speech.
Every day he is still come up with more and more words and phrases. I'm still sometimes shocked with the knowledge and awareness that comes out of his mouth. And he is always saying things to make people smile.

My newest favorite words to hear from Nickolas?
I love you
Nickolas is a very loving child. Nick right now is on a "I love you" kick. Every night before bed, "I love you mommy, I love you daddy, I love you katara (Katheryn), I love you hammie (Sammie - our dog)". Katheryn was never this expressive with her 'I love you'.

It melts my heart.

The end

The first Thursday of every month we head out to Holland Bloorview for our spina bifida group. This is a sacred time for us, NOTHING gets scheduled during this time and we make the 1 hour trek there and 1 1/2 hour trek back (it's rush hour) every month for our 2 hour group.

We have only missed 2, one was when Nick had his shunt revised and the other time group was cancelled by Bloorview because of staffing. We started going when Nickolas was 3 months old and I found out about the group.

I've talked about this group before. It is a great group; it provides support, a professional therapeutic relationship, education as well as social interaction with other parents.

We get an hour to see all of our team; PT/OT/ST/SW/RN (physiotherapy~Kim/Kelly, occupational therapy~Beth/Lorie, speech therapist~Sukaina/Susanne, social work~Gert and nurse~Julia/Elaine). We get some face to face time, we have developed a relationship and an opportunity to ask questions or make plans. It is also an opportunity for Nickolas to foster this relationship and show off what he is doing.
During this time we are all together and we can see what other kids are doing. This was so important when we were one of the youngest (now we are one of the oldest) in the group. It's an opportunity to see a couple of years into our future.

The second hour is when all the parents leave, and the rest of the team stays with the kids. It is an opportunity for us to learn a bit about each other, but also to learn about spina bifida. I know as a parent we use this time as an opportunity to support each other, and sometimes we hijack the education aspect of it. But it is an adult environment and we can talk about what we've been doing, what we know and a bit about who we are. Where we can actually talk with each other.

The last aspect of our group is the education. During this hour we also have one of our professionals facilitate the hour and help us learn more about things we should know about. ie. poop and constipation, bladder issues, functional and spinal levels, assistant devises, seating and skin issues, speech and communication, psychology services, beginning school, social and support issues, and explore our experiences. Just to name a few of the topics we have talked about during our education sessions over the years.

I love going to these groups. But that is all ending now.

This is Nick's whaaaat face

This past week the manager of the SB clinic came and talked with us, for about 15 minutes at the end of our session. She told us that over the last year they are rethinking and trying to improve clinic days. Our last clinic was in January and our next clinic is in the fall (so right now there is 9 months between clinics). This past clinic in January we I think experienced this new clinic? In the morning we saw physiotherapy and occupational therapy and nursing and in the afternoon it was time for the doctors. As she's talking I'm wondering what she is here to tell us? Something good? Something bad? It can't be good when a manager comes to talk with us.
Then she says that it is something that should be said face to face, and not in a letter (that sounds bad). We were told that because of trying to revamp the clinic and other issues (staffing, financial) they are cancelling baby group; next month is the last group. She said that if we had any suggestions we could talk about them.
This month there was only 3 families present, and one was a new mom. Other months there are 6 or more families, most of us 'regulars'.
The first thing that struck me was that I was losing the social support of other parents. This was were I got to meet Stefanie face to face, and Antonella, it's where we met Romu, Dawn and Derek, Rabba, also Meredith and Chris, and other parents!  This is something that is important and can't be replaced with online chats or forums. I brought this up to the manager, and so did another father. The manager had some suggestions about who we could contact to continue in the role of a social parent support group. That part made me feel a bit better - not much, but a bit.

But the more I thought about it, the more upset I became. And stressed. And terrified.
I have been trying to write this blog post for the last 3 days. And a letter that will be sent to the manager and anyone else I can think of to make them LISTEN.

And now I'm getting angry.
Are we as parents that low in the eyes of management that we get a whole 15 minutes to be told something that so drastically changes our care at Bloorview. Was there really no other way than to cancel this group. These hospitals seem to like focus groups and parental input (so they say) there wasn't any thought for a focus group or some kind of parental input into changes.
There wasn't any thought to make these groups every other month? Or try to adjust it a bit to make it more cost effective? Nope, it is on the chopping block. Has management even thought about attending one of these groups to see what is going on in it? Or talk to parents about what they get out of 2 hours a month?
I think I'm kidding myself to think that a simple letter will help to save this program. I'm wondering if it is possible to save it? What is needed to save it? Who would be able to save it? In one form or another.

I'm upset about what we are losing with the end of our spina bifida group.
It's an amazing feeling to walk into a room and feel that these people know you and you know them. Even though you have never met before. It is a group of people, moms, dads, grandparents, caregivers who know the terminology and don't need explanation for simple things you and your child are going through. They fear the same fears, have heard the same words, have been offered the same choices, and waited the same wait. They have the same story and a different story. We are a community.
Once every month I can meet with other people who understand, who don't say "I don't know how you do it" because they do it too.

This picture was taken in Fall 2010 

when we were still the youngest

(I did get permission to take the picture from the families)

I am terrified. Terrified of what we will lose. It wasn't until I'm faced with losing baby group can I realize how much this group has brought us. I really and truly don't think that we are where we are today without the support we get from baby group.

We had our first group in March 2010 and I met other children and their parents. I had such a feeling that I had met these women before (of course I hadn't). And even in those first couple of months of baby group Nickolas started to trust our team and show off during group. Nickolas needs alot of time to trust other people and actually do things that he does at home.

At subsequent groups we were able to connect with physiotherapy even though we hadn't been picked up at Grandview yet (and wouldn't be for 1 year). I know that it is because of baby group we were able to get Nickolas the physiotherapy he needed and our local children rehab centre was not able to provide.
It was through baby group that Nickolas has been able to try out and get some of his assistant devices. Nick got his corner chair after a baby group, he also got to borrow a castor car, and then there is the wheelchair.
It was last May that I first had the realization that Nickolas would need a wheelchair as a child through one of the education sessions. It laid the groundwork for this past fall when it was at baby group that it was suggested that it is time to look at a wheelchair. It was also at baby group that I first saw another little boy go through the same thing we did, so even though that family wasn't at group any more - they still helped me that day.

Nickolas wouldn't be where he is without that wheelchair! He came into himself, learned independence in his wheelchair. Somehow I don't think that the need for a wheelchair would be realized or verbalized with a clinic visit every 9 months. And Grandview has been no help in this area. It was something that we didn't even know we needed until it was suggested - at baby group.

In the quest to find the right walker baby group has given us the opportunity to try different things. Just this past week we tried a heavier childrens shopping cart to see how Nick took to it (he didn't).
And that is just the physical stuff. My relationship with Julia, the nurse, has helped me with our (what seems like a constant) battle with constipation, my concerns about ditropan, and even when to increase catheter sizes or UTI concerns. Knowing that I will see someone once a month and be able to be face to face and ask questions and voice concerns has helped me to be confident in where we are in Nick's care.

I am terrified that we are losing this resource and there isn't anything to replace it. Not Grandview, not our pediatrician and certainly not clinic at Bloorview every 9 months!
This is so much more than a support group, it is more than parent education. This is a group that has made such a tremendous difference in our lives.

I can't believe it is going to end. In the anger and frustration, the stress and the worry is also some denial. As if there is actually something I can do so that this group doesn't end.
I have some ideas, I have a letter forming in my mind - and also coming from this blog. I won't let this end without a fight...

Average

Who ever thought I'd be happy with average.
But I am! I'm ecstatic about average!

We had our reassessment for speech therapy this week.
Nickolas blew Sabrina away.
She was able to do some testing with pictures and stuff to score where he falls. This wasn't even an option last time when Nick wasn't saying anything.
Nickolas falls above average for his age in comprehension. And exactly average for his age in expression.
So we don't qualify for speech therapy this session and we reassess in August.

We have fine tuning to do - but we already did all that learning with Katheryn (who gets reassessed by Sabrina next month).

I can't believe how far Nickolas has come. From November when he was still only saying 5 or 6 words to now he was over 100 words easy. And sentences, multiple word sentences. That you can understand!

I'm a little disappointed that we can't work on pronunciation right now. But at the same time, that frees up some time every week that we already have physiotherapy, and conductive education starting next month. So one less therapy isn't necessarily a bad thing.

Now we just have to figure out where Katheryn is.

Can I have a word? Or 3 or 4?

Who needs speech therapy?!
We're doing all the work at home!
It's only been 10 days since I took the last video and already I can notice the difference between how Nick talks then and now!

And in case you don't get what he's saying...
He has started to play a game, he hides his hand and says "where is it?" then when it uncovers "there it is".
Nick is also using 3+ words in a sentence!
And he really loves talking. I could take videos all day, every day!

It just gives Nick an opportunity to clown around some more!

Speaking in Tongues

I have talked about how Nick's language has blossomed! OK, he's a boy, so I guess I should say boomed!
He talks all the time.
And it has meaning.
I just don't always know what it is.

One morning he's eating breakfast and just talking, talking. I have no idea what - it's like I can pick up a couple words here and there. I swear he was talking in French! (a language I took all through school and know how to say "je ne parle pas francias". Anyone who knows french I'm sure just realized I butchered their language.)

There are alot of words that I understand. I started making a list, but everyone day there are so many more to add to the list that I can't get them all. He probably has 100, maybe more. And sentences.

I know other moms said it would happen, and I know that at the time I knew that it would happen (most of the time I knew it would happen), and I find it magical that it is actually happening now.

This is of course after we finish our block of speech therapy for 6 months! where we worked on communication and not actual speech.
Right at the very end of our block Nick was just starting to get his words, but he was still shy about it. Still not talking that much outside of the home.

We are no strangers to speech therapy.
Katheryn is still in speech therapy. Has been since I referred her at 18 months because she had about 6 words and should have had more than 10. It took about 9 months for her to be picked up, but we have been able to apply everything we have learned back and forth between the 2 kids.

Katheryn we have goals for pronunciation of specific letters (especially K, F, G but other letters as well). For Nick I have to make up my own goals because we just finished our block and the things we learned there just don't seem to apply any more.
I'm hoping that next session we can have the same speech therapist for both kids so we can all be on the same page.
I'm trying to figure out where to start, or if I'm pushing too hard for something that will come naturally on it's own. But i just have to remember how we progressed with Katheryn. I know it will come.

You don't say!

Nick has decided to show off his vocabulary.
Everywhere but in speech therapy.
I call his therapist gushing about how many words he has (he exploded from 5 words to 40 in about 3 weeks). And how I want to refocus our sessions. So we go for a session.
Nothing.
Until about 10 minutes left in our session I left for the bathroom. He starts talking.
In sentences.
With complex sounds. (his favorite word is cheese - with the ch and the eese)

Sabrina (our therapist) had to quickly scribble everything down!
I come back in - nothing.

That kid! I swear he's such a stubborn little thing he wants to talk when he wants to talk. And if he doesn't want to, then he won't.

And we leave, he's chatting and waving bye, and saying "bye-bye 'bina" and pointing at pictures - there is Santa, home, car, no and on and on and on!

I've been trying to write down all of his words and how he says them, but he keeps having more and more every day! And yes that is what I was encouraged about, when I was so worried about his language. That it would just explore one day. Well it has exploded!
It was right around the time that Nick got his wheelchair trial (which we still have borrowed). I was told that this is common, once they find their independence the language will follow.

But Katheryn has a speech delay too (now 'labelled' moderate) and we are starting some session for her in the new year. But she has difficulty is different sounds and not actual words. Sometimes I forget that some kids don't have to work so hard at language (but I did - so I shouldn't be surprised). And in the long run they can all talk.
But understanding has never been an issue, maybe it's the Ridding stubbornness in both of them. Wanting to keep their thoughts a secret and keep their cards close.

(sorry no pictures - I'll try to add some later)

Conductive Education

We have been doing our 2 week block of intensive conductive education at March of Dimes in Toronto. March of Dimes only runs in Toronto and Halifax - boy am I glad we live outside of Toronto! (It takes about 80 minutes to get to March of Dimes in the morning).

It is 3 hours a day, Monday to Friday. In our group is 3 other kids and moms, and we have 2-4 conductors with us. Each of the other kids (I think) has cerebral palsy (CP). Nick is the first one they have, who has SB.

It's a little bit hard to describe what we do. At one point is seems so, so very simple. But they get him working and we get results! Everything has a purpose, everything is connected with what we do through the day.
We have a new perspective, a new way to look at things, to approach things and to do things.

The whole thing is more of a holistic perspective. Looking at the whole picture instead of just looking at individual tasks. And educational. Colours, numbers, choices. Being aware of the environment and expected to answer (or put forth an effort) questions.
Our first day I actually caught myself saying "Oh he can't do that" and then he did! It was kicking his leg out sideways (abduction) to kick a ball.
We have really been making him aware of his body, his legs and his feet. And have him realize that he actually has control over them. Isolating them as well, only moving one leg and keeping the other one straight.

What amazing things I have seen Nick do this week!
- walk with parallel bars (with some assistance - but he's doing ALOT)
- stand by himself against the wall
- cruise, cruise and more cruise (with some assistance)
- kicking a ball - kicking it forward, to the side
- kicking a ball back and forth to a friend (on the parallel bars)
- bringing a ball from his feet up to his hands

And some things he's started to do at home:
- climb over our step at home
- pull to stand (that was Saturday)

In class, we've also been crawling and more cruising, eating snacks and reading stories.

We start the morning talking about the day and colours and songs. Each child has a name on a paper and will react (in different ways) to questions, choices. Nick is still working on the language part, he's shy and is much more interested in looking and watching the other kids than answering questions and making choices.

But at home he's saying more words (he said BATH today!)

And today (Thursday) he was starting to come out of his shell and make more sounds, and more effort at sounds.

If you look at this table that Nick is on - it's called a pith. The slats allow him to hold onto something, but it also lets him feel on 3 sides of his leg. It's not just flat, but more textured. We use it for alot of things. it's a seat, it's a table, its where we eat, and what we walk around. Each child also has a pith on either side of us.

(I have not asked the other parents if I can include their kids in this blog, but I'm hoping to talk more about our experience next week). And a big part of the experience is also the interaction between Nick and the other kids. Especially one little boy.

The days activities revolve around a story. The Three Little Pigs were the first 2 days. We built houses out of bricks (lego), sticks (popsicle sticks) and straw (dried tree needles). A piggy puppet tried to get under the bridge (his bum). Nick had to lean up and down to get the piggy that was under his bed. And we painted mud on piggies with his toes and feet!

Nick is enjoying himself too. Yes he works hard (and today - Thursday was a little rough), but he doesn't cry or carry on as much as he does during traditional physio. Yes there are some things he doesn't like - usually the hand/arm games or activities. Where he needs to lie down, and right when he gets into what we are doing, we are done.

 But usually once we are up again, he's pretty happy.

The 3 hours are also structured, with circle time, pith time, snack time, potty time and then our 'big activity' time. And the story that is started at the beginning continues through the whole day. Then it's time to say bye-bye to all of our friends. Until tomorrow!

When we get home (and after Nick gets a little bit of a nap) it was time to show off what we discovered that Nick can do! Because it's not something that he learned to do in a couple of days - he already  had the ability, we just didn't realize it (Nick or us!)

Age Appropriate

Age appropriate, age appropriate, age appropriate!

I don’t think I’ll get sick of hearing those words!

Occupational Therapy declared that … yes, you got it… Nick was age appropriate!

We had an assessment during Nick’s latest physio appointment. Our last block of sessions included both PT and OT and the two of them work very well together. And they both love Nick! So Sheka (our OT) likes to pop in sometimes to see how we are doing during this next block.

Nick decided to show off for her!

 

Coloring

Puzzles

Taking things out, and then putting them back in the tiny holes

stacking blocks

turning pages

feeding himself

She'd ask him to do something, and he would just go ahead and do the next step!

She said we must have been practicing. Not so much, but Nick really likes doing what his sister is doing - and really LOVES showing off, and if she is colouring, or playing with lego, or doing puzzles - well then he is right there wanting to do it too!

But
Sometimes I wonder, sometimes thoughts get the best of me. Nick isn't all that mobile yet (army crawling only), and not saying any words. I think of Katheryn when she was 16 months old, and my niece when she was 16 months old. And Nick just seems so behind them!

But wait a sec. How is he behind them? Well, first of all he's not running around. Well yes, I can't base all of my fears on something he is not going to be age appropriate in. And so much about being, (AHHH) a toddler, is about, well... toddling. Exploring the environment, learning limits, doing things and learning.

And talking. Talking. Well, we are working on that. We are going to speech therapy group - where all the other kids are older and running around and saying a couple of words (I think). And I KNOW in my head that when Nick is doing so much in his motor skills that his speech will come. I know it in my heart that he understands and that one day he will just pop out those words "Mommy, daddy, doggy, Katheryn" - or however he short forms it, probably banana will be high on the list too. I just wish we were there now.

BUT this is about AGE APPROPRIATE!!!
And everything else will come. I know it, Nick is super smart, and happy and healthy. He has definite opinions about a bunch of things. Not the least of which - if he doesn't feel like doing it, we won't.
Stubborn, stubborn child!
But I'm sure that is age appropriate too!

Talking about speech therapy

Speech Therapy means another therapy to add to the appointments and stuff that Nick is doing. But this is good, and it's not so much about Nickolas, right now it's mom and dad classes and a play group where we get to practice!

We had our speech assessment the beginning of the month, Nick remained completely silent through the whole thing! But he is starting to chatter a little bit. Just no actual words yet. But I think that mama and dada are going to come soon. He is making those sounds when he is really angry and babbling in his crib at night.
I asked, but it doesn't count.

I even caught Katheryn trying to get Nick to talk. I could hear her yelling in the van the other day. When I opened up the door she is saying to Nick - "Say Daddy, Say DADDY! DADDY" He of course just smiled and laughed at her.
Dadda is his favorite sounding word to say. In the middle of the night when he wakes up and is very upset that he is awake it is dadadadada that he's saying in his VERY unhappy voice! But I don't actually think he is calling us - yet.

I made sure to ask for a copy of his assessment when we left - something that I have to keep reminding myself! (So that I have records for everything, instead of them being all over the place).
I received it this year.
Pretty much what we expected.
I really, really hate hearing that he is delayed in everything. But like mobility, language is pretty obvious and it's obvious that by 15 months (wow - are we there already!) he should have a word or 2.
So bad news is that he is severely delayed in his expressive language (using language) - well duh! He has no words. But in reading the report it said that he is showing some 'scattered communication skills' in the 12-15 month range. So that is good.

That's another reason why getting the report is helpful, I can go back and read this stuff instead of just remember that she said something about some talking stuff, but I can't remember. And the words severely delayed just repeating over and over. Because he is showing improvement - that's all I ask.

But his other stuff - his understanding and pre-language is there and in the appropriate range. So he understands what we say, what we want him to do ect.

Have I mentioned that I hate these assessments. They make me feel so dumb.

When I'm asked a really simple question like 'does he point to action words in books?' What?! I have no idea. Oops, he's supposed to be doing that?

But we have a plan. Kyle and I have some workshops to go to this month. We have a parent session where we learn all kinds of different things to do, and the a couple of parent and baby sessions where we practice. And reassess in 4-6 months.

A plan is good. Lets us feel like we are doing something.

I got a picture book for Nick to look through - full of HIM! He seems to be enjoying it!

This is just the first of what is Nick doing posts - more to come - I promise!

Update!

We had a couple of appointments in the last couple of weeks. All with good news.
Nickolas got the all clear from neurosurgery. We were in and out in 30 minutes. Everything is looking great and we will go back in 1 year and get a followup MRI at that time. YAY!
Physio is going well, he is improving so much. He keeps trying to sit up, work those abs, and when he is sitting up it is much more solid. He used to sit very far forward, with his belly resting on his legs, now he is still leaning forward, but off of his legs and twisting around. All very good progress.

Katheryn got her language assessment. She got admitted to their service. I was concerned that they were going to say that she was ok. I know it sounds weird, that I want someone to say that my daughter is behind in something. But when they recognize it, it gives us help. So we had the assessment and Katheryn's language is at a 21 month level - 6 months behind. I'm amazed at how much she has improved in the last couple of months. And I am very glad I asked for an assessment at 18 months - when I found out that she was a little behind - because after an 8 month waiting list we finally were seen! But now the real work starts!

Whenever I think about how I want Nickolas to sit up by himself NOW, roll over more, start to crawl ect. I want it all now. I'm finding we are progressing, just not fast enough. But it will come. It is the same with Katheryn's language.

So yes both my kiddies gotta get some kind of therapy - my mom tells me that I went to speech therapy, and she is so much like me that I'm not really that surprised. Or worried. I guess that is the key, when to be concerned and worried and when to take things in stride and just go with the flow. We are busy flowing down the river right now!