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. :)

Grant for Speech Therapy

Speech therapy is expensive.  And unfortunately, a lot of health insurances do not cover speech therapy or limit the amount they cover (for us, we get 30 sessions a year covered, after we meet a $500 deductible.)  Pretty pitiful, when you know that kiddos with apraxia should get speech several times a week, and speech therapy sessions out of pocket can cost anywhere from $50-$200 a session.

Almost two years ago, while trying to figure out how Hubster and I would pay for Kiddo to go see Nancy Kaufman at her clinic in Michigan, I was grateful to come across an organization called Small Steps in Speech, which provides grants to children who need help funding speech therapy.  Here's some of their info posted on their website:

"Small Steps in Speech is a non-profit foundation created in memory and in honor of Staff Sgt Marc J. Small who was killed in action in February of 2009 while serving his country in Afghanistan.

Small Steps in Speech assists children with speech and language disorders by funding supplemental therapies and treatments for individuals as well as grants to charitable organizations who serve children with communicative disorders. Our goal is to give children the chance to better express themselves in the world in which we live."

When I came across this organization, I immediately looked up the requirements for qualification.  A lot of health grants require you make less than a certain yearly salary to qualify, and it seems like hubster makes just a little too much to qualify for most grants.  But, Small Steps in Speech does not care about how much money you make, but rather how much speech therapy is needed.

And children with apraxia are considered high priority for receiving funding.  In fact, they have separate grants available for apraxia, thanks to funding from the amazing group Childhood Apraxia of Speech of North America (CASANA).  So, I spent the next few days filling out the application, getting together all the necessary paperwork they needed, and sent it off, praying that they'd help us pay for our speech therapy sessions when we went to see the apraxia expert, Nancy Kaufman.  It cost $810 for the four day speech intensive, plus we'd be paying for OT at the clinic, hotel and other travel expenses.

A few weeks later, I got a letter in the mail.  They were going to cover the whole $810 to see Nancy Kaufman!!

We were elated.  And so grateful.  Kiddo learned lots of new words and phrases, I learned new ways of working with him, and it was a fabulous week.  Thank you Small Steps in Speech!!

This generous gift by this amazing organization truly blessed our family and I wanted to share this post not only so family and friends could see one way God has provided for us, but so other parents wanting to provide funding for their child's speech therapy could apply.  It never hurts to try right?  Applications can be found here, and are awarded by quarterly deadlines (Feb 1, May 1, Aug 1, Nov 1).  

Scriptures and Prayers for my Children

I've prayed more prayers for my boys than I could even count. Sometimes they're a quick, "Oh, God, give Kiddo focus during speech today," or "Heavenly Father, bring peace to Little Brother's heart right now," when he's in the middle of a temper tantrum.  Sometimes they are prayers about therapies to start or discontinue, or about good behavior and awesome results at an evaluation or a speech intensive.  Sometimes it's a quick "Help them come to know you Father."

I've also prayed desperate prayers.  Prayers for Little Brother's life, when at 17 weeks pregnant with him I needed to have my appendix removed pronto and the surgeon said so matter-of-factly, "of course there's a risk you will lose the fetus in surgery."  (Side note, I hate that term 'fetus'.  It's a baby folks.  In this case, my baby.  End side note).  Hubster and I, family and friends and members of our church prayed and prayed that God would spare us both.  And obviously, He did.  I call Little Brother "my little miracle."

I've prayed desperate prayers for healing.  We've brought Kiddo to the altar at church numerous times, had our pastors lay hands on his head and pray for his hearing, his speech, his complete and miraculous healing.  Hubster and I pray for both kiddos and their speech and their healing.  We have friends and family and members of our church praying for them too.

But a year or so ago, I started turning to Scripture to find passages to pray.  And a few of those are what I want to share here.

Dear Global Apraxia

Dear Global Apraxia,

When I first heard about you, I was reading a post on the Teach Me to Talk website, and I thought, "Hmm, I wonder if Kiddo has that?  I sure hope not, it sounds terrible."  I asked Kiddo's therapist when he was 17 or 18 months if she thought he had you.  She told me "No" just like that, and I was relieved.

A half year later, no new words or sounds, and it became harder to ignore.  I was fairly convinced now, but since no professional had put it into words, I could pretend you didn't exist.

And then, we moved and we had a new therapist, Ms. Blessing, and I asked her on our second visit. She confirmed it, and in a way I was relieved to know what was going on, though devastated that you were what was plaguing his development.  After she left I wept for about 20 minutes, and then decided to wipe off my tears, roll up my sleeves and get to work beating you.

Because that's what we're going to do.   You hear me apraxia?  We will beat you.

I've been mad at you before.  Not just mad, angry.  I've been frustrated with you daily.  I've been sad because of what you've done to my precious child.  No, not just sad, devastated.  I've wept more tears than I could count.  I've been so overwhelmed by all the areas we need to work on with Kiddo that I've felt paralyzed, not even knowing where to start or what to focus on.  I've been anxious about Kiddo, his progress, the therapies, our finances because of all the therapies.  So much anxiety it has affected my health, every aspect: physical, mental, spiritual and emotional. And apraxia, you are one expensive time consuming beast to beat.  I've been jealous of those kids who don't experience you, who can learn things so quickly and easily, and I've been jealous of those moms who can plan their lives around play dates and nap times, rather than around therapies and doctors appointments.  I'm exhausted because of you.  Tired of all the worry, the stress, the appointments, the bills, the calls to insurance and doctor's offices, the watching other kids do things so easily that Kiddo struggles with, the teaching of the same skills over and over and over and over again.  I've felt lonely on this journey.  And worst of all, I've doubted God's goodness because of you.  I've told God before how much I hate you, how I know God could heal Kiddo of you, and yet, here you still are.   But so is God, right here with me.  You may play a big role in our lives, but God's role is so much bigger and greater and more powerful.

Each and every day a new sound, a new word, a new phrase, a new skill shows that we are slowly but surely beating you.  So much victory, so much celebration in every inchstone on the way to the big milestone.

One day, you will be just something we mention in passing.  "Oh, Kiddo had global apraxia.  It took years of therapy to get him to talk, to jump, to walk up and down stairs alternating his feet, to hold his pencil in a normal grasp, but look at him thriving now."

I look forward to that day.  Better watch yourself apraxia.  Because not only will we overcome you, but we will look back and realize how much stronger you've made all of us.  We're already stronger than we would be without you in our lives.

Yep, you better watch yourself apraxia.  We are beating you.

Progress Report

Wow, it's been a while since I've posted.  Sorry.  I took the kiddos to our favorite playground today, and here's my fav pic of each of them to go along with their progress report.

Kiddo: Biggest progress with Kiddo's speech is he's using the final consonants on words, namely the letters s, t, p, k and ch.  So we're hearing words like "yes" instead of "yeah" and "hep" for help instead of "he", and "chuch" instead of "uh" for church, and I could go on and on, but it's awesome to hear him and be able to understand better what he's saying. :)

He's also been communicating a lot more, and has learned how to ask questions without using any question words by raising his voice at the end of his phrase to make it a question.  For example, sometimes when I tell the kiddos to "Get your shoes, we're going to go bye bye," he'll ask "Baba, Bapa?" which is his way of asking "Are we going to see Grandma and Grandpa?"  Speaking of Grandma and Grandpa, they introduced both kiddos to Hawaiian rolls on Thanksgiving. The kids loved them so much I bought some, and when Kiddo saw them he got so excited and called them "Baba Bapa row!"  He now calls them "pee butta row" since we put peanut butter on them.

Back to Kiddo asking questions: I had the kiddos in the shopping cart, as that is what I call them.  Everyone here in the south calls them buggies.  Anyway, both kiddos were in the shopping cart/buggy and this random guy came up to us, talking to us, and marveling about how well behaved they were sitting there in the buggy.  Kiddo looked up at me, turned his head, furrowed his eyebrows and asked "Buggy?"  Haha, so clear, no translation needed.  Guess maybe we should start calling it that, as he can say that much easier and clearer than shopping cart.

Kiddo's learned how to request his wants and needs without prompting anymore, which is absolutely awesome and a great relief to me and my sanity.  Instead of him coming to me and whining until I can figure out what he wants and prompt him to say it, he tells me what he wants, or will take me to the thing he wants if he doesn't know how to say it.  It is awesome.

He's learned to say the word clean, and he'll walk into a room I've just cleaned and declare "Mama clean?"  He says it with this incredulity to his voice that I try to not take it personally.  Yes, Kiddo, I do clean things.  Every day.

He'll just say things so matter-of-factly and it just makes me and Hubster laugh.  One time he was playing with my hair and I asked him "Where's Daddy's hair?" (expecting him to point at Daddy or something of that nature) and he immediately said "All gone."  (For the record, Hubster's hair is just cut very short.)  Another time he was labeling things he saw while we were reading a book.  Then he pointed at my mouth, said "mow" and then pointed at my nose "big no!"  I'm hoping he means in comparison to his own, and not that I actually have a big nose.  Either way, I'm thrilled that Kiddo is expressing himself.

As for gross motor we're experiencing excruciatingly slow, but steady progress.  He now steps up and down steps without squatting, whoo hoo!  He usually will step up or down by himself, or occasionally he will hold onto someone's hand or something for support,  He's getting much better at using his legs to propel himself forward and backward on his bike, but won't attempt pedaling yet.  Still not jumping yet, but he has learned to bend his knees before jumping, so now he bends his knees and then steps forward, one foot than the other while he says "up".  I so badly want to see this kid jump.  He can now do wheelbarrows all the way across the living room floor with me holding onto his ankles (for several months I held onto his thighs to give him more stability, and about a year ago he couldn't even hold himself up, let alone walk forward with his hands).  He now will let us help him do forward rolls, before he freaked out if we even attempted, though he's a long way from doing them himself.  He can climb all the way up the slides at play places which is pretty cool to see and Little Brother gets so mad/frustrated because he wants to climb up after him and can't.  Kiddo now loves swings.  A couple months ago he refused to get on them.  He still sits in the baby swings as he doens't have enough strength in his core to stay in a regular swing, though he now loves the tire swing.  Provides more stability is my guess, as well as the fact he can spin "roun roun" (around and around).

And as for fine motor, Kiddo is learning to color more within the lines, rather than just scribbling all over coloring pages.  He is starting to write the letters of his name, though he needs prompting, especially with the last three letters of his name.  He can put on his own socks and shoes, which makes going places a lot easier now, yay!  He's able to cut across a sheet of paper now, before he could only do little snips.  He can peel his own clementine if I start it for him, and he's learning to spread his own peanut butter on the bread for his beloved PB&J sandwiches, though he'd much rather lick the knife than actually make a sandwich.

Little Brother:  Little Brother was having terrible temper tantrums, lots of screaming and whining for a few months.  That's around the time he stopped using the 30 or so words he had, and I honestly was getting really worried.  I've experienced Kiddo's uber slow progress, but never a regression of skills, and Little Brother was going through one and I was worried.  But Hubster and I prayed a lot for peace in his little heart and for his words to come back and I believe God answered our prayers.  With the help of our awesome speech therapist Little Brother is using those 30 words he had before and more.  His temper tantrums are so much fewer and further apart, and I don't know if it's because he can communicate more or if he was sick before or just going through a terrible terrible phase that we never want to experience again or what.

BUT, Little Brother's talking!  He's using the names of animals rather than the sounds they say.  He saw a deer on TV and was so excited and proudly declared it a "goat!!" haha.  

He's now requesting the things he wants, usually "caka" for cracker, "titi" for TV, "mo" for more, "ju" for juice, "zizza" for pizza, "didi" for outside, "uppah" for up, "opuh" for open, "su" for cereal, and "chee!" for cheese.  His newest word is "amote" for the remote, which he brings me when he wants to watch TV.  He usually repeats each of these words several times, as if we're not getting it the first time.  For example, he'll bring you his empty cup and say "ju ju ju ju" until you've gotten his cup refilled and in his hands.  We heard you loud and clear the first time, buddy.

He says "Yeah!" a lot.  Example" "Do you want cereal?"  "Su. Yeah!"  He says "Ta da!" with his arms out all triumphant-like every time he finishes one of his puzzles. 

He says "whereditgo?" all as one word for anything that you ask about that he doesn't know where it is.  For example, "Where's Daddy?"  "Dada? Whereditgo?"  Makes me smile every time.  He also puts 'a' in front of words, so for example he'll bring me "a ba!" (ball) or "a book!"  

He'll announce "poo poo" after each time he's done so, as well as every time he's passed gas.  I've gotten many a funny look from strangers when Little Brother suddenly announces "poo poo".  Thanks buddy, for keeping life so entertaining.  

He blows kisses when you tell him "bye bye" or "night night" or "I love you".  And he folds his hands and sits quietly while we pray and proudly declares "Ameh!" when we're done.

He gives monstrously tight hugs, in which his hands are wrapped around your neck and he'll say "wiggle wiggle" as he holds on tight. I enjoy the hug and the wiggles, the choking part I could do without.

As for gross motor skills, he gallops, which he calls jumping, and he does it gladly, even on your lap while he's giving you one of his monstrously tight hugs.  Kiddo is still further ahead than Little Brother on the climbing front.  Little Brother can't climb up play places which makes him very frustrated and so many times I find myself climbing up the play places to help him up so he can play up top with his brother and then go down the slide, only to begin the process over again.  Ugh.  I can't wait until both of them are able to climb up those dang things themselves so I can actually sit and relax like the other parents who oftentimes are oblivious to what their children are even doing.  But that's a rant for another day, sorry.  As for stepping, he quickly graduated from crawling up and down them to now holding onto a support or hand.  But today I watched him climb up a staircase without holding onto anything.  I was happy to snap a photo before he made it to the top. :)

That's about it for now.  Slow and steady progress over here.  Much better than regressions and plateaus.  I'm ready for some speech surges and lots of victories in the gross motor department.  For Christmas, I want to see Kiddo jump and to hear both kiddos say "I love you."  We shall see. ;)

Kaufman Day 4

Last day went great!

Speech: During our speech session Nancy and I both worked with Kiddo on his words/phrases, and Nancy gave me excellent feedback on working with him.  She gave me the list of words she's been working on with him and when I get home I'll make flashcards of each of the words so we can keep working on them.  She'll send us her eval and the list of goals to work on for the next 6 months or so soon, so I look forward to that.  I got the DVDs of each of the sessions, and I look forward to watching them with Hubster and sharing them with Kiddo's speech therapists.  Nancy says he has moderate-severe apraxia of speech, but she sees so much potential in him and would love for him to come back for another session.  Hubster and I are already talking about how to make that happen, we saw so much good come from this week.

She gave Kiddo a ziplock baggie full of cars as his prize for working so hard, as you can kind of see in the pic of the two of them below.  He was smiling like crazy about these cars until I snapped this pic, thanks Kiddo. Not the greatest pic ever, but better than nothing. ;)

OT: Kiddo did some fun work on a scooter board, working on his core and arm/shoulder strength.  Poor kid was grunting after a while, it was so hard for him to propel and steer himself using his arms while lying on the scooter, but he did like the game.

We did some more oral motor work, and Ms. Jessica had me do each of the exercises, so that I'd know how to continue the exercises at home.  She gave me a huge stack of papers to read with different exercises to work on with him, and some ideas of things we could buy to help him with his various sensory and oral-motor challenges.

All in all, an absolutely wonderful week.  God answered each of my prayers about this week: safe travels, health, that Kiddo would cooperate, that our therapists would have wisdom in how to best work with Kiddo, etc.  God is so very good, and blessed our trip abundantly more than I could have asked for or imagined.

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Kiddo has been saying new things this weekend, that have just blow me away.  My favorites:

• After going to the bathroom on a cushioned toilet he declared it a "sof poppy" (soft potty). 
• I asked the barefoot Kiddo if he wanted to put his socks on.  "No.  Fee ha!"  (Feet hot).  
• When I was telling him we were going to have pizza for dinner but he had to wait for it, he told me over and over again, (the tears and crying didn't help with my translation)"No wait.  Pizza now."   
• After going to the bathroom at a rest stop on our drive home, he told me "I dee, I go poppy" (I drink, I go potty).  I was blown away not only that he knew that, but it is his first 5 word phrase, whoo hoo!!  Actually, that's more than just a phrase, it's a whole sentence!!  Oh, and the lady in the bathroom with us washing her hands heard him say that and giggled and commented on how smart he was.  A total stranger was able to interpret what he said.  :)

When Hubster got to see Kiddo again, he was just grinning at all Kiddo had to say, and he told me "You brought me home a different kid.  I'm so proud of him."  

We can't wait to hear what else Kiddo has to say and I pray that we can get another opportunity (or several) to work with Nancy again.  She's pretty awesome, and so is our God who truly and abundantly blessed our trip.

Kaufman-Day 2

Speech:  Uh, can I just go ahead and say that yes, Nancy Kaufman is truly amazing.  I want her to relocate to our neck of the woods so we can work with her every week.  Her energy and intensity is amazing, and a million cups of coffee would still not get me anywhere near the level of energy and enthusiasm and intensity she has.  She pushes the kiddos hard, yet knows their limits and makes sure they have moments of fun while they are working.  And she really does make it fun and keeps them engaged and motivated.  She reminds me of a loving drill sergeant. ;)  She got Kiddo to say more words and phrases in a half hour session, then I think I've gotten him to say in the past week.

They worked on lots of his favorite words (pizza, banana, puzzle, shoe, water, sticker, monkey) as well as a lot of the words on her Kaufman cards.  And lots of phrases, such as:

• Put on/off
• Put away
• I want to pick
• Up high
• Oh no!
• Stand up
• Go down

and lots of phrases using verbs, which can also be used as requests:

• pet puppy
• throw ball
• read book
• eat apple
• open bag
• turn on/off
• hug baby
• blow/pop bubbles
• sleep bed
• ride bus/boat
• put on hat

She also has been working on those final consonants (such as hat, boat, bed, up, want, book, yes, pick) and he's doing so much better with them with the help of hand cues.  

She's also getting him to say "yes" with the final "s" sound, instead of his usual "yeah," and to say "again" instead of his usual "more" when he wants something to happen again.

I have pages of notes I've taken, and Nancy records each session, so I can't wait to watch the DVD sessions again and share them with his speech therapists when we get home.

I'm so proud of how hard he's been working for Nancy.  We've prayed hard that he would cooperate with Nancy and her methods that he would learn a lot, and we see God answering our prayers and blessing our time here. :)

OT:  Oh my goodness, their sensory gym is amazing and I wish I could get a pic of Kiddo working/playing in it, but sadly they don't allow pictures in it, though I'm grateful to be able to go in and watch and learn.

In OT today, he did some swinging, did an obstacle course twice that ended up in a super fun ball pit, and played in a kiddie pool of dried rice and beans.  He loved that!  He laid out on his tummy in it, his arms going up and down like he was making a snow rice angel.

Ms. Jessica did quite a bit of work on his picky eating and oral motor skills.  He got to eat some veggie straws, and had to bite it using his back molars, rather than biting it from his front teeth, to help strengthen his jaw.  He caught on quite quickly and ate several veggie straws, biting from the back molars each time and asking for more.

She then showed me strategies for introducing him to new food so he doesn't experience the anxiety/meltdowns he normally does about having to eat anything new.  Today he tried a slice of pear and a turkey burger.  He did great, taking two bites of the pear (he wasn't a huge fan) but eating about half of the turkey burger.  She believes his picky eating and anxiety about new foods stem from a texture thing, and so her strategies should help him deal with new foods and their new textures.

*          *          *

Little Brother's adventure included shopping with Grandma at Meijers, where the pony rides are only a penny.  He loved it and cried when it was time to get off.

Kiddo is so proud of all his "ticker"s he got for his hard work in each session and didn't want to take his shirt with his stickers off for bed.  He is currently sleeping in this outfit.  He was so tired that about half an hour before his usual bedtime he didn't say a word, just went to the bathroom and then climbed into bed by himself.  Within a minute, he was asleep, and about ten minutes later when I put Little Brother into his pack-n-play for the night next to where Kiddo was sleeping, Kiddo's eyes flickered open and he was immediately back asleep again.  

Kiddo is working so hard and making me so proud. :)  Stay tuned to see what we learn tomorrow!

Kaufman Evaluation Day

Well, we made it to West Bloomfield, MI!  It was a 13 hour car trip, divided over two days.  Kiddos did pretty good, thank goodness for technology!

The morning started bright and early, with Little Brother escaping from his pack and play and playing in the living area of our two bedroom suite hotel (which is awesome btw).  Anyway, after getting ready for the day we headed off to the Kaufman Children's Center.  I felt like I was headed off to the first day of school, I was nervous and excited.

But we made it!

Speech Evaluation:

I think what I've been most nervous about is how Kiddo would work with Ms. Nancy, but he was great!  I got to watch from a separate room through the window while he had fun with her toys and did his best with responding to all of her requests.  After his eval with Nancy, I went in to talk to her for a while about her observations.  She told me she sees a lot of potential in him, it just will take longer for him to resolve from apraxia since he has so many other delays and areas to focus on, in addition to the speech.

  

She told me the goals she wants to work on with him for the week and they include the following:

• Working on his t, d, n, w, and h sounds
• Working on final consonants
• Naming nouns, verbs, and functions in 2-3 word phrases
• Learning how to ask questions

And can I just say, yes it's true, Nancy Kaufman is absolutely AMAZING!  She is awesome at keeping him motivated, balancing play with lots of repetitions of speech.  I think my jaw dropped at one point at the phrases she was able to get out of this kid that no one has ever attempted to get him to say yet.  No wonder she's called the queen of apraxia and I feel so blessed to be able to work with her this week.  I can't wait to see the progress he'll make and how she'll go about working on these goals with him.  I don't know if I'll be able to sleep tonight, I'm that excited. :)

OT Evaluation:

Our OT for the week, Ms. Jessica is absolutely fabulous and I'm so excited to see her work with him.  She continually was pointing out things to me, some of which I knew or therapists had pointed out to me, some things I didn't know.  I was starting to feel a little overwhelmed with all the info, but she reassured me she'd have all this in writing for me, and would give me a plan of action as to how to work with him on all these areas after the week was over.  I was so glad to hear her say that what our OT at home is working on with him at home is exactly what Kiddo needs to be working on, so I feel we're on the right track.  Ms. Jessica is a lot more aware of other issues our OT does not know about (such as oral motor), and so for that, I'm grateful for the new insight.

Kiddo had a few moments where he freaked out about something she wanted him to do, usually oral motor related, but overall he was very cooperative and his normal cute self and had fun.

After the two hour eval, we came up with a plan.  He will have an hour of OT for the next three days, where we will work on the following areas:

• Oral-motor skills, working specifically on a stronger bite, blowing without puffing out his cheeks, using a straw or whistle without biting it for stability, putting his tongue up on the roof of his mouth, less sensitivity to certain foods/textures, and introducing him to new foods since he is such a picky eater.  
• Motor skills, specifically on building up his core strength and stability.  Ms. Jessica said once we get his core stronger and more stable while he's moving (instead of the waddling while he runs, sitting in a squat, turning sideways to go up and down steps, etc), we should see a jump in his oral and fine motor skills, as well as speech, and so she really wants to focus on this, as it's (no pun intended) core to all other areas of development.  Our OT at home works on this a lot, but I'm interested to see how Ms. Jessica will work on this with Kiddo.
• Sensory motor, working on his vestibular and proprioceptive issues.  She said his vestibular issues are very minor now, so we've obviously made great progress with our OT at home, but proprioceptive still seems to be the area we're struggling with and I'm intrigued to see what she'll work on with him to help him with that.

The Schedule:

On Tuesday and Wednesday we'll have speech with Nancy Kaufman twice a day in the morning, with a half hour break in between, have a break for lunch, and be back at 1:00 for his OT session.

On Thursday (our last day) we'll have just one speech session and a consultation, and then an OT session and a consultation and be done by noon.  I look forward to the consultations so I can learn how to implement what he's learning at home and keep the progress going forward, as well as share the info with his therapists at home.

Oh, and so I don't forget about Little Brother and Grandma (who so generously came along for the trip to help me watch Little Brother) they had a blast at the local library and story time where they got to play with a parachute.

Stay tuned for Day 2!

Progress Report

Hi folks!  We leave THIS weekend to head to Michigan to work with The Nancy Kaufman next week, I am so beyond excited!!!!  Can't wait to see what we both will learn.  Currently Little Brother and I have a cold, so pray that we're all better and there is no sickness during our trip.  That would be no fun at all.  My mom is coming with me to watch Little Brother while Kiddo is in his speech and OT sessions, and after his four day intensive we'll visit my relatives who live a few hours away from the Kaufman Children's Center.  

Anyway, without further ado, the progress report.


Kiddo: 

Motor Skills:
We just got back from his OT appointment.  I had asked his OT to reevaluate him so we could bring the report with us when we go to the Kaufman Children's Center so we don't have to pay the full price for their OT evals, which cost about $400.  Yikes!  Hopefully they accept this and we save some money.  Plus, I did want to know how he was improving, so here's the scoop in how he scored back when we evaluated in March and when she reevaluated him last week:

Locomotion (walking, running, jumping, skipping, etc)      22 months (in March)  ---->25 months (now)

Balance and coordination     27 months ----->34 months

Fine motor       15 months ----->28 months

Hand/eye coordination    38 months----> 40 months

Not as much progress as I was hoping for, but we're going in the right direction.  She didn't reevaluate his sensory stuff, which is where I think he's made the most improvement and what I'd be most intrigued to see regarding progress.

I'll admit I was a little disheartened by the numbers above.  We've been going to this OT for 8 months, and to see only a two or three month improvement in several areas is frustrating.  The fact that he's over four and measuring like a two-three year old in pretty much every way is uber discouraging.  But, he definitely has made progress, and apparently over a years worth of progress in his fine motor skills, whoo hoo!  I celebrate every baby step, every new skill, every victory.  Here's a video of him at our recent trip to the playground.  The fact he even attempted to climb this is huge.  He needs lots of encouragement, but he's getting there and getting stronger slowly but surely.

Speech:  I have found the perfect activity to keep Kiddo motivated while we practice his speech.  I found cute little Angry Bird cat toys at Walmart (shhh don't tell Kiddo what they really are), green pigs and a red bird and I'll set up paper cups in a pyramid fashion with the pigs strategically placed on the cups.  After saying a certain number of words/phrases he gets to throw the Angry Bird toy at the paper cups and knocks the cups and pigs down.  He LOVES this!!  I thought this would work a few times before it no longer motivated him to practice his words, but we've been doing it a few times each week.  The pic to the left is the Pinterest pic where I got the idea for the speech activity.  I love that site!

My new favorite random conversations with Kiddo

While reading a book about opposites:

Me: Look, The giraffe is tall. And the monkey is short.  

Kiddo: Yeah!

Me: Hey, is Daddy tall or short?

Kiddo: Tall.

Me: Is Mommy tall or short?

Kiddo: Short.  (thanks Kiddo).

Me: Is Brother tall or short?

Kiddo: (ponders for a moment).  Tall Baby!

At the consignment shop:

Cashier: Look, your mommy is buying you some games.  Do you want to go home and play games?

Kiddo: Game!  Ok!

The cashier and I both laughed, and honestly I was so excited that what he said was so clear that I didn't have to translate for him.  I left just feeling happy in my heart that he was perfectly understood by a stranger.  Victory.

Random:  Oh my gosh, this kid loves Angry Birds.  He could play it all day long if we let him, and he excitedly tells us how many stars he gets after he beats a level.  (Wa saa! = one star! Boo saaa! = two stars!  Bee saa! = three stars!)  We redecorated his room with Angry Bird wall decals and he was the most excited child I think I have ever seen.  I should have had my video camera out.  He smiles so much more than he used to, and tells me things all the time, though unfortunately half of the time I don't know what he's saying.  He is a master at working the DVD player and my iphone and anything computerized or digital.  He has started doing this coughing thing to get out of doing something he doesn't want to do.  Ex: speech therapist tells him to say a word that is hard for him, and he does this fake cough to (hopefully) get out of having to say it.  It never works, but he still tries, and I think it's cute, though I don't let him know that.  As you can tell by the above conversation, he now says "Ok!" after we tell him to do something, or we give him news that is exciting, which I think is adorable and makes me feel like I have such an obedient child, ha ha.   Ex: "Go get your shoes."  "Ok!"

Little Brother

He loves his animal crackers.  "Goka" is what he calls them.

Speech: We got Little Brother reevaluated for speech again.  He qualified again.  He hasn't gained any words since his second birthday in August and has been using the 50 or so words he had previously a lot less or not at all, which greatly concerns me.  Also, the way he says some of his words hasn't improved at all, which could be a red flag for apraxia.  Since apraxia is genetic, it's possible for both siblings to have it, and in fact I know of several families I've met online with two or even three kiddos with apraxia.  If Little Brother does have apraxia, it is no where near as severe as Kiddo's (Kiddo only said two sounds at Little Brother's age) and he definitely would only have speech apraxia, not the whole body apraxia that Kiddo does.  But, honestly I'm thinking that it's just a delay and with services by our beloved Ms. Blessing he'll pick up words quickly and be communicating better in no time.

Random: He LOVES puzzles, and gets really frustrated if he can't get one of the peg pieces to fit in properly.  Cue temper tantrum.  He's also started spitting if he's mad, which makes me wonder if the phrase "spitting mad" came about because of a toddler.  He has learned how to gallop and gallops everywhere, especially when he has an audience.  He is the best snuggler.  He'll climb into your lap (especially if you're using a laptop) and tuck his arms underneath him and get all cozy and just snuggle for a few minutes, and I gladly set my computer aside to soak those minutes up.  Bliss.

Anyway, that's about all for now.  Check back next week to see how things are going for us at the Kaufman Children's Center!! :)

Summer Plan of Genius

Sometimes, I get overwhelmed with all the things that Kiddo needs to work on.  Scratch that.  A lot of the time.  He needs work not just on his speech, (LOTS and LOTS of work on his speech) but also lots of help with all the following categories: Language Comprehension, Gross Motor, Fine Motor, Self Help and Social/Emotional.  I have lots of pins on Pinterest and post-marked lots of pages in in several books I've collected over the last two years with activities and ideas for each category.  And I was only getting more overwhelmed with what to do to help him.  To top that off, Little Brother also has a speech delay and is doing speech therapy, and so I knew I needed to be focusing on his speech as well.  I felt all over the place, and like we would make such slow progress with Kiddo by continuing what we're doing of working a little bit of time in each area each week.

So I was excited to get to leave behind all the stress and go out of state to visit family and friends where we used to live.  While there, I determined to only work with Kiddo on his gross motor stuff.  Sure, I still incorporated speech here and there throughout the day, but every day I planned at least one trip to a play place, kid's gym, or playground.  And I really saw Kiddos' gross motor skills blossom!  Added bonus, Little Brother's skills bloomed too!

We went to Chick-fil-A a lot.  Why not get lunch and some gross motor practice in one trip?  Kiddo was able to climb up the HUGE slide!  January of this year, he wouldn't even attempt the slide at the CFA near our house.  In May he was climbing about a third of the way up.  But now he is climbing to the top effortlessly.  And what's even better?  He will slide down it!  He never went down the slides, but rather would go back down the steps.  His climbing of the platform steps at Chick-fil-A has gotten much better, and he's much faster so now he can keep up with other kids who are climbing up it now, and go down the slide like they do.  Play places are now fun, rather than stressful for me, now that he can get up and down completely by himself. :)  And Little Brother made quite some climbing strides himself, with all the practice.  He can now follow Kiddo up the entire slide, and slide back down with him, both of them giggling together when they crash into each other at the bottom.


We went a few times to the mall, which has one of my favorite play places.  The pics aren't of the greatest quality, as they're all from my camera phone, but I'm so glad I was able to capture these moments. :)

Kiddo climbing the eagle.  Love that proud grin when he made it to the top. :)

Little Brother's turn on the eagle. :)

More climbing fun

I also took the kiddos to My Gym, a place where I took Kiddo before Little Brother was born, when we were aware of his gross motor delays, but not the extent of his speech difficulties.  My Gym, along with physical therapy was great for him and I really miss My Gym, as we have nothing like this near where we live now. :(  Anyway, I registered the kiddos for a sibling class while we were in town and they had a blast!

Ladder and slide fun.

Ball pit fun!  Check out Kiddo's improving ladder skills too. ;)

We had lots of other adventures too!  We met some of my friends' new babies, had play dates with a few friends of ours at Chick-fil-A and the farm, and of course had lots of fun visiting with family.  After each of our adventures, this is what I usually saw within minutes:

So anyway, back to The Summer Plan of Genius.  I was discussing with Hubster how it's overwhelming to figure out what to work on with Kiddo since there's so many areas and so little time.  So after discussing a while, we realized that what I did while we were out of town is what we should keep doing.  I will continue to work with Kiddo throughout every day on his speech skills, but I will rotate our focus among his other areas of weakness on a weekly basis.  So one week we will work on his gross and fine motor skills, go to playgrounds, do crafts and exercises at home, really focus on all of his occupational therapy homework, etc.  Another week, we will really focus on his speech and language skills.  Back and forth.  Not that we won't keep working on all these areas each week, because we can always incorporate lots of these things throughout our day.  But I will plan activities that focus on that area specifically and reinforce often.  Just as he made lots of progress in his speech when we went to CHAMP Camp last summer (a week long speech intensive), and he made lots of progress on our trip in his gross motor skills, I hope this will help the skills to come faster overall, and help me maintain my sanity.

I'm excited about this.  I think it'll make things much easier and more fun for me, but for Kiddo too, as (hopefully) it'll really help his motor planning by getting to work on certain skills often for a few days at a time.  Anyway, we'll have to see how it works.

I pray that it'll be a summer of lots of progress in every area for both kiddos, and that it'll be a summer of peace for my mind and heart as I lean on God instead of myself for strength and wisdom. :)

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!!