SPEAK Week 2

It has been an awesome two weeks.  Check out the previous post to learn more about the things we learned if you're interested.  Today's post is mainly for celebrating the people that loved on Kiddo and helped both of us learn so very much, as well as final thoughts Nancy had about Kiddo and his future.

Nancy Kaufman:

First of all, a collage, comparing Kiddo working with Nancy in 2014, and just this past few weeks.  Seriously, this lady is amazing.  She knows her stuff, and she is happy to teach it to parents so they can reinforce what the kiddos have been learning at home.  She is passionate and dedicated to these kids and her methods, and they really do work.  

Nancy's Final Thoughts:

In our final meeting with Nancy, Nancy told me how smart Kiddo was, how much progress he's made, and how she's convinced he'll do great and be resolved soon.  I was surprised by this, and so I asked her where she thought Kiddo was on the apraxia spectrum.  He has been stuck in the severe to moderate severe range for so long I thought it would just be awesome to hear we were in the moderate range.  But what she told me, blew me away.  She said she thinks he has mild apraxia!  

During one of his sessions she had told me he sounded very nasal.  I asked her what that meant exactly and she said he sounds very nasal and congested and that we should get an ENT (Ear, Nose, Throat) appointment as soon as we get back.  (I already set up the appointment for August 17, haha).  She told me it could be something simple, like allergies or congestion that could be treated with medicine, or possibly some form of an obstruction that might require a medical procedure or surgery to fix. She explained that when you hear someone talking with a pinched nose it's much harder to understand what they're saying, that generally the vowels are the same, but the consonant sounds are distorted or left out all together, and so getting that fixed will do wonders for his clarity.

She thinks in another year or so, he shouldn't need speech anymore which would be awesome.  I really hope she is right about the nasal thing, because getting that corrected sounds a lot easier than several more years of intensive speech therapy.  Praying he doesn't require surgery, but if it will help him, then we'll do whatever he needs.

I asked her why she thought his language was so far below his peers.  She thinks it's because he has some red flags for autism (which we've had him tested for, he just doesn't have enough flags to be considered on the spectrum), and this is just one of those flags.  She thinks he needs a social skills therapist moreso than a speech therapist, and we should look for social skills groups in our area when we get home.  Also, the fact that he hasn't really had opportunities to practice using language could be a factor, and so she recommends we spend more time encouraging him to use longer sentences and correct grammar, then we do working on his articulation, and we should see his language really take off.  A language take off sounds great to me. :)

So overall, I feel reassured with this news, though if the ENT doesn't find anything then I don't know what we'll do except to continue with the intensive speech therapy until he doesn't need it anymore.  But, anyway, Kiddo with the amazing Nancy Kaufman.

SPEAK Week 1

We made it to the Kaufman Children's Center!!!  I've been waiting for this for years (seriously!) and FINALLY, Kiddo and I are in Michigan for two weeks of intensive therapy with the amazing Nancy Kaufman in her SPEAK program.  We just finished the first week and both Kiddo and I have learned a lot and we still have one week to go.  :)

We started off with an evaluation, in which Nancy was very impressed with how far he has come in the two years since she last saw him, but we still have quite a ways to go.  Here are the goals we are working on while we're here:

Articulation goals:

• Final and medial (middle) m (ex: tummy and game)
• Final and medial (middle) n (ex: bunny and on) 
• S blends (ex: sleep, sweater, stop, snack, scoop, etc.)
• Th (ex: three, Ethan, with)
• Medial L (Ex: yellow, hello)

Language goals:

• Using appropriate verb tenses
• Using proper pronouns (he/she)
• Using proper grammar (a, an, the, to, is, are, etc)
• Using longer sentences with all of the above goals (ex: "She is kicking the ball."  Before he would just say "girl kick ball")

He is working with Nancy and two other therapists, and they are all awesome and enthusiastic and I don't know what I'll do without them when we go back, haha.  Kiddo is a champ, cooperating really hard and though he mentions he's tired to me from time to time, he just keeps working.  I am sooo proud of him.

Each day he also gets a one-hour speech session with three other kids who are participating in the summer SPEAK program to work on social language skills.  It begins with Lisa, an awesome music therapist singing a few songs with opportunities for the kiddos to practice speech.  Then Nancy leads them in a fun game or activity that requires the kiddos to let her know who's turn it is, what they want to do, etc.  And then they end with a craft project, that the mommies and daddies come out and help with, and encourage our kiddos to ask the therapists for the materials they need.  Lots of good stuff.  We've also been enjoying getting to know the other people here for SPEAK.  In fact, we're all going to meet at the Detroit Zoo on Sunday which should be lots of fun. :)

After each day's hard work, we go somewhere fun to celebrate Kiddo's hard work, such as Chuck E Cheese's, to a playground with some of our new friends from SPEAK, to the movies to see Secret Life of Pets, swimming in our hotel pool, and playing at the McDonald's play place and trying to collect all the Secret Life of Pets toys they have in Happy Meals.  I've been reinforcing what he's been learning in his sessions and it seems to be sticking. :)  For example, he gave me a big hug the other day and told me "Mommy, I'm squeezing you!"  Another time, we went to the playground and I was pushing him on the swings.  Normally he would just request "Higher!" but this time he told me "I want to go higher!"  And when we went to the pool he told me "Look my legs float like a stick!  Not like a rock."  I was blown away by the proper grammar in that statement. :)

Proudly showing off the visor he decorated in one of his speech sessions. :)

Can't wait for week 2, but then I also don't want it to end. :)

ABCs

For your viewing pleasure, I present to you both kiddos' renditions of their ABCs.

Kiddo:

Little Brother: 

Stay tuned for longer speech videos to be posted in the next week or so. :)

Supplementation Update

I've gotten requests for what supplements we are now using, and I'm eager to give an answer.  I realized it's been a while since I last posted about all the supplements we were using.  After a lot of experimentation, we have settled on a few that I feel helps Kiddo and Little Brother, and the rest of the supplements that were recommended to us we no longer use.

Before I begin, let me note I am not a medical doctor.  I'm only reporting what has worked for us, and I've only tried these things after lots of research and by starting each of these supplements on a lowered dose and gradually increasing to the recommended dose to watch for side effects and if it is in fact, helping Kiddo.  Also, I reference autism a few times in this post.  Kiddo does not have autism, but as I've researched these supplements, I've learned it's common for kids with autism and apraxia to have the same deficiencies and so I will mention when that is the case.

And now, without further ado, the supplements we are still using and seeing results from can be found in this post on my other blog.

Happy Supplementing!

Last Day of Mini CHAMP

So, the last day has come and gone.  It started with a receptive language test, and I wrote down every area where he struggled, for us to focus on later.  These include things like:

• Prepositions: in back of, behind, in front of
• Sequential order: first, then, last, etc
• Understanding not/doesn't
• Pronouns: his/hers, and he/she/they
• Most/least
• Identifying words by their beginning letter sound
• Rhyming
• Same/different
• Together/apart

Whew.  I'll get a formal report of the language test in a few days, but it's just so interesting to me how he does so well with academic stuff (he aced the colors, numbers, shapes, letters, sight words, and even adjectives like biggest, smallest, longest, etc) but struggles so much with basic language.

He then worked on his goals of saying words that start with D and F.  He's doing so well!  I was given a report that states that in the first session he had 10% accuracy of his words beginning with D, and 0% accuracy of the words beginning with F.  By the end of the second day, with cueing, he was getting 73% accuracy of D words and 90% accuracy of F words.  Whoo hoo, go Kiddo!  I'll get a report in a few days of today's progress, so I'm looking forward to seeing the results of his overall progress.

He had lots of fun with the clinicians today, but his favorite game was collecting Angry Birds after saying his words to put on a parachute.  After he had collected them all, he got to make them fly, which he was so excited about, he started doing his marching dance while they were playing with the parachute.  :)

By the end, even though he was tired, he was counting with four and five both starting with an F sound, and Jodi and I, who were sitting in the observation room, were clapping and cheering together, haha.  Awesome, proud moment for both of us.

The exhausted Kiddo with Jodi (in blue) and his clinicians Michele, Erica and Courtney

Honestly, I had this moment during one of the sessions where I felt so overwhelmed and lost and I put my head down on the little table and wanted to cry.  To think that we're spending three days, three sessions a day, working on two sounds that he's been working on in therapy already for a while, and will need more practice on for a while, well sometimes it just doesn't seem fair.  He still has so far to go.  And I was thinking that he's getting as much therapy in these three days as he does privately in three months.  How long is this going to take for him to talk like his peers?  But whenever I feel that way, I try to think of the positive and how far he has come.   He's made 90% progress on his F sound in two days, imagine what it will be after three?  These ladies know what they're doing and I see the results.

In fact, in the elevator as we were going up to our hotel room a man asked him how old he was.  Kiddo said proudly "Five!" (with the F sound, whoo hoo!) And the man laughed. "Five?" he said. "Before you know it, you'll be twenty!" And Kiddo giggled at that.

And as if that didn't make me proud enough, when we made it back to our hotel, he proudly declared "I'm back!" a phrase they had been working on with him in day two.

I am so proud of all the hard work he and Jodi and the clinicians did.  I love CHAMP, but even moreso, do I love my little Champ who always amazes me with how hard he works to learn what comes so easily to others.  He inspires me.

Mini CHAMP Day 2

Day 2 is done!  The clinicians continued working on words beginning with D and F, making sure to incorporate them into short phrases as well.  Here's a few of those phrases:

Feet down
Four years
Five years
Fun time
Fall down
Fish fin
Food please
Dog eat
Eat dinner

Other phrases worked on, especially while they were playing their games include:

I like ___
High five
Thumbs up
____ please
Under _____
On _____
I found ____
Where is _____?

They also worked on using phrases starting with "I'm" today.

I'm (Kiddo's name)
I'm five
I'm hungry
I'm thirsty
I'm good

Here he is working with his three graduate clinicians.  They are all awesome and keep Kiddo engaged and working hard, but disguising it as fun.  He's doing great working with them.

Tomorrow's the last day.  His first session will be a receptive (comprehension) language test, because we know he has a receptive delay, it's just never been formally evaluated.  Then he'll have a half hour break, a session working on his D and F goals, a break for lunch, and one final speech session.  Sad to think it's almost done, but he's been working like a champ (pun intended) and making steady progress on words starting with D and F.  :)

A Hard Day with a Sweet Finish

Today was rough.  Both kiddos were more disobedient and whinier than usual.  Kiddo was not cooperating when I tried to work with him on his lesson, so I gave up.  I was tired and my patience was wearing thin with them.  The clinic where we go to OT and speech called and said they need an updated referral, as ours expires soon.  So thinking it'd be a five minute phone call like it usually is to get a referral faxed over, I gave the doctor's office a call.  This call took a whopping 37 minutes, with me being put on hold several times and the kiddos interrupting other times.

And I was worrying about Little Brother, about how he keeps sloooowly adding new words to his vocabulary (he must have 200-300) but doesn't combine them in phrases.  He should be doing that by now.  The magic number of words a child usually has before he starts combining them is 50 and we're well past that.  For example he can say 'more', and he can see 'please', but he won't say them together, even if I tell him too.  So I worried again that maybe I'm to be a mama of two kiddos with apraxia.  Double the speech therapy appointments, double the bills, double the heartache and hard work.

I was frustrated and worried and overwhelmed, so Hubster suggested we go out for lunch.  It sounded great, so we piled in the car, had a great lunch, ran a few errands, and then on our way home I got pulled over for going 5 miles over the speed limit (luckily the officer just gave me a warning).  I was mad as I drove home, making sure I followed the speed limit exactly, since the officer happened to follow me pretty much all the way home.  Mad not so much at the officer or the warning, but at how things in my life were going.  So, when we got home I plopped the kids in front of the TV, grabbed a few chocolates and my Bible and determined to spend time with God.  Question where He was in all of this and what He wanted me to learn from all this, and why He wasn't answering my most desperate prayers for my sons and their healing and their words to come quickly and effortlessly.

Little Brother decided it was the perfect opportunity to snuggle me.  I can't turn down Little Brother snuggles.  And then Kiddo wanted to show me something he had found.  And then Little Brother wanted a snack.  And then Kiddo wanted a drink.  And then Little Brother threw a toy at Kiddo.

And I yelled at them. Fear filled their faces and I instantly regretted everything I said. I snuggled my boys, told them I loved them, then sent them to watch TV.  Finally they did, but I was no longer in a seeking God kind of mood, though I desperately needed Him.

I went on Facebook.  A place I know I should avoid, because I'll read about all the cute things my friends' kids are saying and videos of the milestones they're making effortlessly, and instantly feel sad, but I wanted to do something that would make me feel normal, that would distract me from my angry and sad thoughts.

After 5 minutes of reading articles and random things my friends are doing, I came across this blog post posted on the apraxia support group page:  "To the Mamas of the Special Ones on the Hard Days".  It was a refreshing read and made me feel so much better.  So, not alone.  I felt encouraged to take a few minutes to myself guilt free before spending time playing with the boys.

And then I did play with them.  And I heard Kiddo say a new word "Oos!" (oops!)  I heard it several times throughout the evening, and it made me smile every time.  That new word, that grin when Kiddo said it for the first time, well it made my heart release the frustration and soak in the victory.

And while we were playing outside, Kiddo pointed to the sky.  "Ook!" he said.  I didn't look.  "Oh, yeah, an airplane."  "No Mama.  Hecopper".   I stared at him in surprise.  I've never heard him say helicopter before.  Jeez, that's a hard word to say, but Kiddo was trying it on his own without practicing it over and over again like we oftentimes have to do.  He came up with his own motor plan for it.  Victory!

And then, Little Brother said his newest word too.  I was kissing him all over his face and he was giggling so hard he couldn't catch his breath, and then he gasped and said "Sop!"  "Did you just say stop?" I asked him.  "Yeah," he said.  "Sop!"  I grinned.  A new word, I'll take it.

Or when my children say any new word.  :)

And then, bedtime rolled around.  After Kiddo was all snuggled in bed and we had read his book before bed, we prayed together.  Sometimes I do the praying, sometimes I do it fill in the blank style.  I decided to fill-in-the-blank it.  Me: "Thank you God for ____."  He said his name in response.  "Me," I corrected.  "And thank you God for _____."  "Eesus!"

I choked back tears as I told him, "Yes, thank you God for Jesus."  I've never had any indication that Kiddo understands anything relating to God, Jesus, Bible stories, except for identifying "baby Eesus" at Christmas time.  I've never prayed before using the words "Thank you God for Jesus."  It was his own spontaneous thought and it filled my heart with hope and joy.

We finished our prayers and I kissed that precious little guy goodnight and as I left his room it hit me: God had answered my angry prayers through the mouth of my apraxic child.  How amazing, how incredible is that?  Though things may be rough, I am so thankful that God sent me His son Jesus, to give me strength for all I need to do, to give me peace when I'm feeling overwhelmed, and to forgive my anger and frustration.  And just as I ache inside that my children are not where I want them to be developmentally, oh how much more God's heart must have ached when His son was nailed to a cross He did not deserve.

Yes, thank you God for Jesus.

Journey through 2014

Wow, hard to believe 2014 is almost over and we're ready to embrace 2015.  Last year I wrote a blog post, Oh the Difference a Year Makes, and it was a great experience for me, to remember how much Kiddo progressed, and the obstacles we faced in 2013.  At the beginning of 2013 he had three words, and by December he had about 300!  So, to see the journey of 2014 with it's victories and setbacks, I present:

2014 in review:

January:  Kiddo started preschool, which he loved.  He was FINALLY able to climb up those play places they have at McDonald, Chick-fil-A, Burger King, etc.  And, according to the speech videos I posted in January, he was using a few phrases, specifically his attempt at "excuse me" after burping and saying "Ready, set, go!"

February:  In February we had two setbacks and a huge victory.  Setback one: Our attempt at therapeutic riding was a bust, as Kiddo refused to get on the pony.  Kinda defeats the purpose of going to therapeutic riding if all you're going to do is feed and pet the pony and not, well, ride it.  Setback two: we attempted a gluten free diet, but something in the gluten free foods was causing him diarrhea and the pediatrician recommended we stop.  And the major victory?  Kiddo was potty trained in three days!!  I thought it was going to take longer than that, just because most skills take a long time to master with apraxia and I've read of apraxic children not being potty trained until 4 or 5, but at age 3 1/2 he was fully potty trained, (night time trained too!) in just three days.  Best victory ever.  :)

March: Both kiddos started to use more words.  And Kiddo was evaluated by a new occupational therapist, who turned out to be a major Godsend.  He has made so much progress working with her and she has been such a blessing to us.  

April: After going to several audiologists and ENTs in our area and not getting the answers I wanted regarding the pressure in Kiddo's middle ears, the increased frequency of ear infections, and whether or not he should be wearing his hearing aid, I took him to a well respected hearing clinic in the city an hour and a half away from us.  Finally got answers--tubes needed to go in pronto to relieve the pressure and to remove the fluid that had been causing the ear infections. Kiddo also started using three and even four word phrases.

May: Kiddo got his ear tubes in, and within no time we were noticing he was understanding more of what we were saying.  Yeah, uh better hearing helps with that.  We also learned that though he still has a severe hearing loss in his right ear, it was not recommended he wear his hearing aid anymore. Research indicates it's best to let the brain learn to compensate for the loss by relying on the good ear and not a hearing aid in the impaired ear.  We also celebrated the second annual Apraxia Awareness Day.

June: Kiddo turned four, whoo hoo!!!  And another setback, one I found devastating: we were supposed to go work with Jodi Kumar, awesome speech language pathologist at George Washington University Speech and Hearing Center.  She is the creator of CHAMP Camp, where we had taken Kiddo last summer and seen great results.  We had the hotel booked and everything, but Jodi had an accident while playing volleyball that required surgery the week she was supposed to work with Kiddo. I was glad to hear she was ok, but I was so disappointed that we wouldn't be working with her.  We went to the DC area anyway, to spend time with family for Kiddo's birthday and I made it a goal to work on those OT skills in play places and playgrounds while we were there. 

July: July was pretty relaxing as we had a lot less therapy appointments.  I went to CASANA, a conference for parents and speech therapists about working with kiddos with apraxia.  Learned a whole lot and got to meet some cool people, hang out with an apraxia mom friend I'd met at CHAMP Camp last summer, and I also got to meet Nancy Kaufman.  We also started Verbal Behavior Therapy, which I feel like Kiddo made LOTS of progress in, but that therapist was sadly only able to work with us for two months and we cannot find another one anywhere near us.

August: Little Brother turned two!  Both Kiddos made some progress with their speech: Little Brother was saying about 20 words, and Kiddo lots of two and three word phrases.  Kiddo was also participating in mini conversations, which always makes me smile.  We also went on an AMAZING family beach trip that was such a blessing to experience.

A selfie with both of my little blessings. :)

September: The new school year started, which meant more therapies through the school system.  We elected to not put Kiddo in a preschool this year, so that I could work with him myself, and we could use the money we were putting toward preschool toward the OT that we were seeing so much progress in instead.  But, this meant I had twice as many therapies to drive him too, and to chase Little Brother around their waiting rooms while Kiddo is in therapy, as opposed to just dropping him off at school where he got the therapies.  Life got real busy, real fast.

October: Little Brother was evaluated for speech and qualified for twice a month speech therapy through the county.   Kiddo had the privilege of working with the "Apraxia Queen" Nancy Kaufman and an awesome OT for four whole days at an apraxia intensive at the Kaufman Children's Center.  We both learned so much, and after the intensive Kiddo is now consistently saying 3 or 4 word phrases, and using final consonants on lots of words, whoo hoo! 

  

November: We experienced lots of slow and steady progress.

December: More slow and steady progress.  Kiddo's using verbs in his phrases now, like cry, work, clean, sleep, play, eat, and drink.  Some funny conversations.  A Christmas with my family, filled with excitement, in which the kiddos were able to tell us what they got.  Kiddo could read to us who the presents were to and who they were from.  He got a balance board to work on those gross motor skills and both kiddos got a ridiculous amount of other goodies to keep them plenty busy.



Honestly, sometimes I get overwhelmed with how far we still have to go.  Just a few days ago, I was crying to Hubster because Kiddo had only mastered four of the fifteen goals I set for him for this year.  The biggest one I had for him, 'Jumping', I want to see him do so badly, and we're not there yet.  But, he mastered the second goal I had for him, 'Potty Trained', in a record three days, whoo hoo!  He mastered my goal of him speaking in phrases, whoo hoo!  He now goes up and down slides like a champ, which wasn't even one of the goals I set for him, but is so awesome to see.  And while he hasn't mastered 11 goals, he's definitely made progress in them.  Hopefully we'll master them in 2015.

Ahh, see, perspective.  Gotta keep things in perspective, and that's what this blog does for me.  It reminds me that though the progress can be excruciatingly slow and the journey overwhelming and exhausting and expensive and full of worry, the progress is there and the journey worth continuing.  There are victories and blessings and joys and triumphs that we cherish because of the journey.  Kiddo's in a totally different place then he was last year.  So with a proper perspective I can truly say, yes, 2014 was a good year indeed.  And I can't wait to see what victories and progress are in store for us for 2015. 

Kaufman Day 3

Speech:  Kiddo had a fabulous first session with Nancy, where again he said so many words and phrases it filled an entire notebook page, two columns wide.  Way to go Kiddo!

I must admit, she's tough on these kids.  She expects lots of sounds and words and good behavior out of them.  I think it's what gives her such amazing results, but I have to be honest, sometimes it makes me wince.  Like when she'll push Kiddo's hand away from his mouth so she can hear him better.  I understand why she does it, but we've taught Kiddo hand cues, and so he uses them to remind himself of how to make the sound.  Nancy told me she doesn't think the cues are actually helping him, but I disagree.  Some of the sounds he can't make unless he's using the cues, such as his "t"s and sometimes his "m"s.  Also when Kiddo doesn't understand what she's asking him to do, or he gets distracted, you can see her get a little frustrated with him.  But I think that's because she's so eager to get him talking again, working on his sounds and words and so I understand where she's coming from.  Nancy isn't this perfect apraxia goddess, but she sure does get the job done and has amazing results!  She gets more words and phrases out of him in a 30 minute session as I think I get out of him in a few days.  Seriously.

For his second session of the day, I was armed with notebook and pen for another round, but Nancy told me to come in for this session, and to prompt him with some of the phrases.  I must admit, it's intimidating to be trying to do what the so called "Queen of Apraxia" does so effortlessly, but her feedback was so very helpful and will be what will stick with me best when we get home and are Nancy Kaufmanless.  She wants to do the same thing for our last session tomorrow.

Taking a break between speech sessions.  He loves this little car cushion. :)

OT: In OT today he got to swing in this awesome swing that has a small ball pit in the bottom to work on his vestibular system.  He loved it.  He got to do some crawling through tunnels to work on his proprioception, and then we worked on his oral motor stuff.  Jessica showed me tools to use to strengthen Kiddo's jaw, and the Z-Vibe, a vibrating tool that encourages the tongue to follow it.  She put some Pixie Stix dust on the Z-Vibe and put it on the roof of his mouth, and we finally had success with him getting his tongue to the roof of his mouth every single time.  We need his tongue to go there for him to be able to say t, d, and n's properly.  Something tells me I'll need to invest in a Z-Vibe. ;)  We also were working on his blowing without puffing out his cheeks using a whistle and blowing bubbles, and he is getting much better with it.

*           *          *

Little Brother's adventures of the day with Grandma included going to an indoor play place/coffee shop called Jungle Java, where he made a new friend.  He also had fun exploring the hotel grounds and this little playground on our hotel's property.

After all Kiddo's hard work, I took him to the hotel pool for some chill time, where he had a blast, and every time I'd ask him if he was all done or wanted more pool, the response was always "more pool".  Finally, fingers all prunified, I told him it was time to go back to our hotel room, where he asked me without any prompting "Go to elevator?"  Uh, yeah kid, we can ride the elevator as many times as you want if you use words and phrases like that!!!!

Can't believe tomorrow is our last day at the Kaufman Children's Center. We have learned so much, but still have so much more to learn.

Hello Fall Schedule!

Well, summer fun is done.  It was wonderful to have a lot less appointments over the summer break!  All we had was occupational therapy (OT) once a week at the clinic and speech therapy in our home twice a month, and I also took Kiddo to the chiropractor every other week because the OT noticed he was favoring his right side.  Turns out, his left side was a little tight, and a few chiropractic adjustments got him back into proper alignment. I was hoping the chiropractic adjustments would help him have a jump in his motor skills, but I honestly haven't noticed a difference in that area.  I worked with Kiddo on his speech and OT stuff, while having a few play dates and trips to playgrounds and other fun stuff like that.  Plus, we went on our wonderful beach trip.  It was a pretty great summer.

Now that the school year has started up, here's what our schedule looks like now:

Private Therapies:
Occupational Therapy at the clinic (Wednesdays)
Speech Therapy once a month with Ms. Blessing at our house (Thursdays)

School Therapies: 
Speech Therapy twice a week (Mondays and Wednesdays)
OT once a month (Mondays)
PT once a month (Mondays)

Kiddo is no longer going to preschool, as both private therapy and preschool are expensive, so we decided to stick with private therapies, where we're seeing a lot more progress.  So I bring him to his old preschool or to the therapists' office downtown for his school therapies, and we work with him on his therapy homework and language and general preschool material and all that other good stuff at home.

Little Brother has learned how every single toy works in the waiting rooms, and which door leads to which particular mischief he can get into.  He's learning how to play games on my cell phone, just so I can keep him still for a whole two minutes and try and overhear how Kiddo is doing in his session. ;)

Life is full of busyness, but full of blessings too.

Blessings at the Beach

Hubster and I took the kiddos to the beach a few weeks ago.  I admit, I was not super excited about it, as Kiddo is kind of anti-water.  As in, will freak out if water gets in his face, and will cling to you with a kung-fu grip if he's in more than a few inches of water.  Plus, Little Brother gets into everything and has a love for running off wherever his heart fancies, and so I was anticipating an exhausting trip for us.

It was not.  If anything, it was the most refreshing, blessed time Hubster and I have experienced in a while.  We have never seen Kiddo so excited or expressive about anything before.  We'd ask him, "Where are we going?" and he'd exclaim "Da bea!" and do what I call his happy dance.  Or we'd tell him we're going to the pool, and he'd exclaim "Da poo!" and do his made up moves for what he thought swimming looked like.  Never have we heard him so expressive, so vocal, so excited.  I've called him stoic for years.  Not anymore.

And that's just the beginning of the blessings folks.  The Kiddo LOVED the water!  He wanted to swim.  He wanted to go into the ocean and didn't want to get out.  He got water in his face, and though at the beginning of our trip he freaked out a little bit and demanded a "towa" (towel) we'd tell him "no, just wipe it off with your hand", and he would.  Towards the end of our trip, he would wipe it off without us telling him anything, or ignore the water in his face completely.  MAJOR VICTORY!!

He started our pool times by clinging tightly to one of us, or content to play on the top step or two, but slowly he got braver.  We let him float on a boat raft for a while, and he really enjoyed that.  We introduced a kickboard to him, which he liked, but we had to hold tightly to it since he doesn't have the core strength to stay on it without our support.  And we graduated to the swimmies on his arms, which he was so proud of, and by the last night of our beach vacation, was able to keep himself completely upright and (as you can see in the picture below, top right) content to not have Mommy and Daddy so close by.  Again, major victories. :)

And, as if that wasn't awesome enough, Kiddo started JUMPING into the water, trusting Daddy to catch him.  Yeah.  Pure awesomeness.

Little Brother had a lot of fun splashing in the water too, and he added a few new words, the most common being "airplane".  We celebrated his b-day at the beach (pics to come in another post), with my parents, who joined us for a few days, and it was a great time for all.

Swimming with Mommy and Grandma, flying kites with Grandpa and Daddy, and other beach fun.

Hubster and I just soaked in all the progress we saw in Kiddo.  Our hearts were filled with a joy we haven't experienced in a while, seeing the joy, the excitement, the fun the children were having.  It really felt like God was smiling on us, showing us His love for us, for our children, and how everything is going to be ok.  All the hard work we're doing, and will continue to do to get Kiddo talking and communicating and climbing and all that other important stuff, is paying off and we are seeing fruit.  Beautiful, sweet apples of gold.

Had to get a selfie with both my blessings. :)

I am so blessed.  Filled with hope for Kiddos' future.  In awe of God's awesomeness.  And excited that I can share it with you here on the blog.  I hope I never forget how awesome the week really was. :)

Apraxia Conference

So, this past weekend I went to the CASANA (Childhood Apraxia of Speech Association of North America) Conference.  This is a yearly conference, held in a different city each summer, in which experts in apraxia come to teach speech therapists and parents how to work with children with apraxia.  This year it was in Nashville, Tennessee and it was an awesome experience!  People from 47 states and 6 countries were there.

I shared a hotel room with one of my friends I met at CHAMP Camp last summer and it was WONDERFUL to see her again and talk about our kiddos!  I also got to meet Mary Clare, one of my fav apraxia bloggers and Facebook friends I got to meet In Real Life, and I got to meet Nancy Kaufman, an awesome apraxia expert who Kiddo and I will be going to see in October.  Nancy Kaufman will be working with Kiddo for a four day speech intensive, and I'm excited to see her methods and her ideas for working with Kiddo when we're there.  Here's the four of us all together: awesome moment!! And if that wasn't cool enough, we all went to dinner together with a few other cool people.  :)

Some of the best things I learned:

• A few strategies for working with Kiddo's social skills.  Kiddo has some issues that I've been at a loss how to work with (eye contact, anxiety, answering questions, spontaneous speech, etc).  I attended a session about ABA therapy (Applied Behavior Analysis) that gave some good ideas, and I talked to the speaker afterwards and asked two specific questions relating to Kiddo.  She gave EXCELLENT suggestions, and Hubster and I now realize we need to look into ABA therapy for Kiddo.  I always thought it was specifically for kids with autism (which Kiddo does not have) but it is for any child with behavioral, social, or communication issues and we think it will be really helpful for Kiddo.
• I (of course!) learned lots of strategies for working with Kiddo on his speech.  I learned more about cueing, scripting, articulation, prosody, and all those other terms apraxia parents and speech therapists know well and I'm not going to go into here.  I admit I need to learn a lot more of the hand cues, as they really do help Kiddo with his speech and I need to be more consistent in using them. 
• I learned a few fun activities I can do with Kiddo to get lots of speech practice in.
• I learned strategies for combining literacy and speech, and also for working on handwriting and other OT-type activities.
• The conference concluded with a panel of teens who had resolved of their apraxia, answering questions.  It was wonderful to hear them talking like any other teen would, and for them to admit that either they don't really remember speech therapy or that it wasn't a traumatic experience for them, just something that was part of their life and they found fun, and they appreciate now, as they like to be able to talk. ;)  And I loved how one of them said once she was resolved of apraxia they went to Disneyland to celebrate.  Maybe we'll need to do something like that. ;)

Honestly, I could go on and on, but the overall point is I feel more confident in what I should be working on with Kiddo and strategies to do so.  I wish I had been able to attend more sessions, as most of them sounded really good and helpful for working with Kiddo, but they offered five topics during each session and you had to pick one.  Ugh, so tough to choose, especially when they are being offered by such wonderful experts.

And it is just so wonderful to be around people who not only know what apraxia is and how to work with it, but also parents who know the journey oh so well.  

So glad I went!!  Next year it's in San Antonio, TX.

Apraxia is....

My Dearest Kiddo,

Today, on Apraxia Awareness Day, I want to share not the medical definition of apraxia, or the recommendations for overcoming apraxia, but rather, I want to share what apraxia is for me personally.  This is the most vulnerable I have ever been with anyone about this, but there's no need to keep it hidden inside.  One day, I know you'll be able to tell me what apraxia is to you.  I look forward to that day.  I'll probably cry as you tell me, just as I cried as I wrote parts of this letter.  But the tears are there because I love you so very much and I want what is best for you, today and always.  And so, without further ado, what apraxia is to me:

Apraxia is:

Worry.  What will your future look like?  What will school be like for you?  Will you experience the apraxia to such a degree that it defines who you are?  Will it make you limit yourself?  Will you be bullied because of it?  Were you aware of what those kids were saying about you at the playground?  What if you got lost, how will people who find you know who you are so they can bring you back to me?  Should we try a gluten-free diet?  Should we try a new supplement?  Should we increase your occupational therapy?  Should we increase your speech therapy?  Should we go to that ridiculously expensive apraxia speech intensive half-way across the country?  Is there a new therapy we should try?  Should I be spending more time teaching you than I do?  The list goes on and on.  Sometimes it keeps me up at night.  Sometimes it keeps me from relaxing while I read my Bible or worship at church.  It hits most often when I see you interacting with your peers, kids who are able to do so naturally what we've been working on for months/years.

Research. All the apraxia moms I come across say basically the same thing.  After they grieved when they heard the diagnosis, they did lots of research.  And I think it's because it's what you have to do to help your child.  Not a lot of people, doctors included, know about apraxia and the things that come with it.  So I've had to become an expert in it.  I've logged hours into learning more about apraxia, sensory processing disorder, motor disorders, hypotonia, verbal behavior, hyperlexia, hearing impairment, nutritional supplements, IEP meetings, alternate therapies, and the list goes on.  Yet I love learning more about it, it's become almost like an obsession to me that I have to limit.  I want to understand how your mind and body functions so that I can help you the best way I can.

Jealousy.  I love you to pieces Kiddo, I adore you for who you are, but a mother can't help but see other children your age and younger doing things effortlessly that you've worked months or years learning how to do.  I can't help reading the funny things my friends' children are saying on Facebook and wishing I had something funny you said to put on there too.  I watch other kids playing on the playground effortlessly, their mothers able to sit and watch, while I help you climb up the ladder and watch you carefully to make sure you don't step off those platform thingies that you are unaware of.  I get jealous of those moms who can go to all the play dates because they don't have to plan around appointments.  I get jealous when I hear mothers proudly tell about how young their child was when they met such and such a milestone that you and I worked our butt off to get to or are still working toward.  I get jealous when I hear other mothers complain about how concerned they are that their children won't eat their vegetables or drink their milk or whatever their concern is and I want to get up and leave because I wish that was the biggest concern I had about you.  (For the record, you don't eat a single vegetable or drink any milk, but see number one above to see where that fits on the scale of what concerns me).  I'm working on the whole jealousy/comparison thing, and I've gotten a lot better, but sometimes it's still a struggle.  I think all mothers do it because we love our children so fiercely, we want them to be successful, to enjoy life, and we use other children to measure how we as mothers and our children are doing.

Exhaustion.  I'll do anything for you Kiddo, but honestly I'm tired of running from one therapy appointment to the next.  Tired of doctor appointment after doctor appointment that rarely seems to bring the answers I wanted.  Tired of fighting with our insurance company (another for the record: I have our insurance numbers memorized as well as the whole "press 1 for English" menu.  And no, I do not want to take a survey).  Tired of teaching you the same things over and over and over and over again.  I'm tired of trying to figure out what it is you want all the time, because you can't tell me.  I'm tired of the worry and feeling guilty and jealous.    Mostly, I'm tired of seeing you get further and further behind your peers.  I'm tired of seeing you try and try and still struggle.  I'm tired of seeing your frustration.  I'm tired.

But apraxia is also:

Victory.  I cried when you took your first steps at 19 months.  Not just like a few tears.  Nope, I wept, and I praised God, I was so happy and so proud to see you take those first steps.  Now, I'm sure many parents have cried when they saw their children take their first steps too.  But because I knew how hard it was for you, how much physical therapy it took you to get there, it was that much more special.  That much more meaningful.  That much more joyful.  It's worth the effort, the frustration, the therapy appointments, to see you grow and thrive my son.  Every word, every accomplishment is a victory.  A victory to treasure, to take joy and pride in.

Strength.  Not just for you, who have spent your entire life in doctor's offices and therapy appointments, who works hard with your therapists, who sits still when nurses draw more blood, who sits quietly during hearing tests, who works to communicate the only way you know how.  But it has grown strength in me and Daddy as well.  We have grown as a couple as we fight for you together.  We have grown closer to God, trusting He has you in the palm of His hands and that He will give us the strength to do all that we need to do for you and our family.  I also have grown in ways I couldn't imagine.  Me, who used to avoid phone calls at all costs, now will get on the phone with insurance, or billing, or with a clinic to ask questions without a second thought, to fight for you. I have become a fierce mama bear, protecting my cub.  I have become stronger, and I know overcoming apraxia will help you be stronger too, to appreciate the benefits of hard work and perseverance.

Hope.  I've come across many other special needs mamas in our journey to overcome apraxia.  And some of them do not have the ability to say their children can overcome their disorder/disability.  But yours, Kiddo, can be overcome.  It will take lots of work.  Lots of frustration and I'm sure a lot more tears.  But you will be able to jump and pedal your bicycle, and skip, and catch a ball one day.  You will be able to dress yourself and put on your own shoes.  And most importantly, you will be able to talk.  You will be able to express yourself, to share your heart and your ideas with the world.  You will still have struggles, but you will be able to care for yourself, to thrive, to love God with your whole heart and your whole soul and your whole body.

Faith.   I think a parent-to-be may consider having a child with special needs a possibility, but that thought gets pushed out of your mind as you dream big for your child. When you find out your child does have special needs, it's devastating.  There's a grieving process before you can accept that this is the precious child God has given you and you must protect and help him/her with everything you have.  But becoming such a parent has molded me into a stronger woman, a stronger parent, a stronger Christian.  I have had to lean on God in ways I never have before.  I have prayed prayers I never could have prayed before.  I have learned to trust God in new ways.  I will never stop praying for you to be healed and/or for miraculous progress until it happens or until we have beaten apraxia.   But I also trust that God has a plan in all this.  Not something I would have admitted a year or so ago.  I believe that God does have a plan to "prosper you, and not to harm you, plans to give you hope and a future" (Jeremiah 29:11).  I may get frustrated that it's not happening yet, but I believe that it will be so.  That you and I are going to have an amazing testimony to share because we have struggled through apraxia with God's help and strength.  God is so good, my son, and I trust Him.  I pray that you will learn to as well.

Love.  You are loved, my son.  By friends and family who support us, who celebrate in your victories and share in our struggles, who watch Little Brother while I take you to appointments or therapies or a speech intensive because they love you so fiercely.  You are loved by other special needs and apraxia parents, who know the journey and celebrate the victories and share in the struggles all too well.  You are loved by your therapists, who always have such nice things to say about you, who work hard with you.  It has been an honor to meet such people, that I can call friends and who love you too.  They say it takes a village to raise a child, and you have a whole village full of people who love you and support you.
And of course, Daddy and I love love love you so much Kiddo, that we'll do anything for you.  We talk together about what we can do to help you, and we grin and celebrate each of your victories together.  We'll travel halfway across the country to get you a week of therapy with the best of the best apraxia experts, no matter the cost.  We'll give up our hobbies without a second thought just to give you the time you need, the therapies you need, the love you need.  Our love for you and Little Brother is so deep, I can't even put it into words.  You, my son, teach me so much and make me so proud.  You are a blessing, my pride and joy, my little hero.  I love you just as you are.  You are God's gift to us and I'm so proud you are mine.  I love you!!

Love always and forever,
Your Mama Bear

Happy Apraxia Awareness Day!!

Sensory Stuff and OT Awesomeness

I've known Kiddo had some sensory processing issues for a while, and I read a few books on it.  The books say to take your child to an OT (occupational therapist) for an evaluation and treatment, and so I did.  I told them that I knew Kiddo had SPD (sensory processing disorder).  But they (and I say 'they' because we've worked with two different OTs) both focused only on his fine motor skills.  Which I realize is an aspect of OT, but not really what I wanted help with.  OT #1 we worked with for 6 months.  She worked on finger and hand strengthening (using tweezers, clothespins, playing with theraputty, etc) and finger dexterity (stringing beads, playing games, etc).  We then switched to OT #2 which I did not have to pay for anymore, as we saw her through the school system and we see once a month.  She has been working with him on scissor skills (Kiddo can cut a piece of paper in half) and writing skills (he can now draw circles, crosses, and several letters, including most of the letters of his name independently.)

Now, don't get me wrong, this is all good stuff.  But Kiddo cannot do a lot of physical things like jump and climb and pedal a bicycle and walk up a curb without needing to hold on to someone's hand.  And all the physical therapy we've been doing hasn't really been helping a lot with that but I've read that OT could.  So I knew we needed to find an OT who could help us.

And then, my apraxia mom friend in the area told me about a new OT clinic.  And so I got the referral from our pediatrician and scheduled the appointment.  And then we went and I was BLOWN AWAY.

The eval was very thorough.  I filled out a packet of info about how Kiddo responded to certain situations and when he met certain milestones (all of them late except for stacking blocks. Sigh) while the OT watched how Kiddo did certain things in their sensory clinic.  The next week she gave me a copy of the eval: a whopping 7 pages, even longer than our speech eval at GWU where he got the official diagnosis of severe apraxia.

Anyway, here's the results of his evaluation based on each system that effects Kiddo:

Tactile system: Responsible for interpreting touch.  Kiddo is undersensitive: he doesn't notice when he has a messy face, and has poor grasp on utensils, crayons etc, as well as difficulty dressing and undressing due to this undersensitivity.  He also has a fairly high pain tolerance--he's had blood drawn multiple times and he doesn't even flinch when they do it.  He watches fascinated, the nurses and I are always amazed.  But Kiddo is oversensitive when it comes to his ears.  He doesn't like water or wind in his ears.  Washing his hair isn't the most pleasant experience, nor is driving with the windows down.  But he no longer covers his ears and starts crying whenever the wind starts blowing.  OT diagnosed him with moderate tactile issues.

Auditory system: Responsible for interpreting sound.  Kiddo is oversensitive, despite his hearing loss.  Vacuum cleaners, blenders, leaf blowers, weed whackers, etc used to terrify him.  He's gotten much better about that if he has warning that they are about to start.  OT diagnosed him with mild auditory issues.

Proprioceptive system: Responsible for understanding body position without using eyes.  This totally explains why Kiddo has such a hard time climbing things and on the playground.  Also explains why he dislikes swings and slides and when Daddy picks him up and swings him around.  OT diagnosed him with severe propioceptive issues.

Vestibular system: Responsible for discriminating movement in space--works with the proprioceptive system to regulate muscle tone, balance, postural control, bilateral movement (side to side) and eye-hand coordination.  Again, explains why playing is such hard work for him.  OT noticed the way he transitions from sitting to standing, from lying to sitting, and from standing to sitting all indicate severe proprioceptive issues.  The way the OT described it to me was that his vestibular system was very immature, like that of a 22 month old, and so the way he moved around would look like that of the average 22 month old.  Talk about a punch in the gut, but it really does explain so much.  Little Brother, at 20 months, will soon be passing him in both speech and gross motor skills, but that is another blog post for another time.  The following picture I found on Pinterest really helped me understand the vestibular issues better.  Kiddo is most definitely a vestibular avoider.

Our awesome OT now works with Kiddo once a week for thirty minutes, and they're the most amazing 30 minutes I've ever witnessed.  Finally, I feel like we're on the right track and getting him the help he's been needing for a while regarding his gross motor delays.  Here's a pic of the sensory clinic where Kiddo works with his awesome OT.

There's a huge ball pit she has him wade through, bringing pillows from one side of the ball pit to the other.  Then he climbs out, stepping through each of those big tires.  Then he swings for a little while on a little platform swing, which you can't see in the picture, then he climbs up the tires and wooden steps to get a hanging monkey and brings it down.  Then, he goes over to the ramp, climbs up it, walks across the suspended bridge and down the slide.  Most exhausting obstacle course ever for him, but he's getting so much better each time and I've seen such good progress.  She also works on different things with him once the obstacle course is completed until our time is up.  It goes by too quick for me, but Kiddo is chatty but exhausted by the time the 30 minutes is up and he takes a good long nap afterward.  I love OT days. :)

As if finally addressing all these issues isn't awesome enough, we've had a little bonus.  Kiddo's talking more often, and the OT says that usually happens as a child's sensory system regulates.  She says in her experience, a lot of children with speech delays and disorders have a speech explosion after they start OT.  I'll gladly take it.  Finding this therapist has been such a blessing and I truly praise God for bringing her into our lives.

I'll leave you with a video of the boys playing.  I honestly don't think Kiddo would have attempted "jumping" into the ball pit like this before OT.  He probably would have crawled over the pool and played a little bit and then would be done.  But he and Little Brother did this over and over and over again, for about an hour. :)

Multi-Word Phrases

Kiddo is in what I call a "speech surge" again and I am not complaining!  I am so proud of this kid and the progress he is making.  Some of the things he said today honestly shocked me, and so I wanted to record them here so I wouldn't forget them.  He is now officially in the multi-word phrase.  Pretty much everything he said today, was two, three or even four word phrases, though he did occasionally say a few one word phrases, such as pointing out a circle ("circo" as opposed to the "cako" he used to say), or that he wanted an orange ("or!") Starburst rather than the red I gave him.

So, without further ado, the fun and surprising things he said today:

• "I wa pho peeze."  Probably unnecessary translation: I want phone please.  Normally in that case he would just say "pho peeze" and then with lots of prompting I can get him to expand to the four word phrase.  But twice today he came up to me saying that phrase completely on his own. 
• "Los o egg"  Translation: Lots of eggs.  Today I located our Easter eggs in the garage, which for some reason were in the trick or treat pumpkin bucket.  So we played with both.  (Didja notice the Christmas cookie cutters in the picture above.  We played with the play-doh on Saturday.  A little variety in holiday traditions never hurt anybody, right?)  Anyway, I've never heard Kiddo say there was lots of something before, though I've heard him say egg several times lately and hence the reason I pulled out the Easter eggs early.  
• "Cady i kukin"  Translation: Candy in pumpkin.  Apparently he remembered that you can get candy in the pumpkin and he wanted some.  So I obliged, and went to get him some.  Remember the "orange" comment I mentioned?  Yeah, that was related to this experience.  
• "Two Cady." No translation needed.  Apparently the one orange Starburst was not enough for the kid.  He's gotten demanding, now that he knows the power of words (and that his mother is a sucker, giving in to most of his requests because she's so proud of him using his words).
• "I di i"  Translation: I did it.  We were playing with his bowling set and after he knocked over all the pins he said this.  Took me a few seconds to figure out what he was saying, but then I got it. A new phrase I hope to keep hearing over and over!
• "Mo wawa peeze."  Unnecessary Translation: More water please.  Usually he brings me his empty cup and I ask him what he wants, and then he'll say "mo" or "wawa peeze" but this if the first time he said this as a three word phrase without any prompting.  A few hours later, he said it again.  
• "Go up."  Absolutely no translation necessary.  And although this is not a new phrase, the fact that there was a "p" at the end of "up" was new.  I've heard "uh" as "up" since he was 16 months old. "Ow" and "Uh" were his first and only words for a looooong time.  He said this multiple times today as we were playing with his car, pushing it up the hill and then letting it "go dow".
• And finally, today I asked him "Do you want to play in the play room or your room?"  He responded clearly "My oom."  I was stunned, because first of all, I've never heard him say room before (well, 'oom like they do in the Chronicles of Narnia), but also because he knew to say "my" rather than repeat "your."  And then (just to make sure my ears weren't deceiving me), once we entered his room he proudly declared "my 'oom."

So darn proud!