Speech Video

The much-anticipated annual speech video is here!

Kiddo: Age 6 1/2.  Current speech diagnosis: Moderate apraxia, mild language delay.  We're making progress, woot woot!

So much progress in language, it's awesome.  Other people are able to understand a lot of what he says so I don't need to translate for him as much.  I tried to in this video just in case you couldn't catch it, but so far several people are saying they can understand most of what he said, whoo hoo!  So very proud of this guy. :)

Happy Valentine's Day!!

Lessons I'm Learning from Nancy Kaufman

People have asked me if going to see Nancy Kaufman is worth the money.  It is expensive, add in the travel expenses and family sacrifices to make it work and it is costly.

But it's worth every penny.  Every new word, new phrase, new lesson learned is worth it.  I've seen her methods before.  I've attended her sessions at conferences.  I've purchased and watched her DVDs teaching her methods.  I watched her work with Kiddo for four days in 2014.  I've put into practice what I've learned from her.  But watching her work with your own child, determine what your child needs to work on and is capable of, and then teach you how to do it yourself is invaluable.  

The top three lessons I've learned from Nancy Kaufman during our time at SPEAK:

1) Push for more, because he is capable of more. 

I've watched speech therapists work with my son and drill him on two and three syllable words, trying to mold those words into perfection before moving onto longer words and phrases.  Because the more words he says, the harder it is to understand.  I've done it myself with him.

But according to Nancy Kaufman, this is wrong.  Instead of focusing on making sure a child can say bunny correctly (how often do kiddos say bunny every day, anyway?) focus on getting them to functional speech.  "I want bunny", even if it doesn't sound clear, is better than a child being able to say just bunny perfectly clear.

I had learned this last time we were with Nancy Kaufman in 2014, but I'm seeing just how much she expects of Kiddo, and he is meeting her expectations!  I would try and add one word to the length of his sentences, she is adding anywhere from 2-5 words to his phrases.

On Monday (the first day) she showed him three pictures of a boy in sequence, first of him chewing bubble gum, then of blowing a bubble, and then of it popping.  She asked him what was happening in the pictures and he said "Boy blow bubble."  Last Thursday, she was having him say "He is blowing a bubble.  It popped."  And today during his sessions she was having him say "He is chewing bubble gum.  He is blowing a bubble.  It popped on his face.  He needs to wipe it off."

Can you believe that?!  From a three word phrase to four complete sentences..  Amazing!!  Sure, it wasn't perfectly clear.  Sure he needed prompting for quite a bit of those four sentences.  But we're working on that, while teaching him how to use language he's heard for years but has never had the opportunity to use himself.  Because he needs...

2) Scripting, scripting, and more scripting.

Again, I've learned about scripting from her before.  It simply means telling your child what you want them to say, because they don't know how to say it themselves.  It is something that you need to do continuously to help your child grow in language.  So for example, if Kiddo goes up to our hotel elevator and tells me "Push button," I now correct him and say, "I'm.." and pause to let him correct himself and finish the sentence with proper grammar, giving him the opportunity to say "I'm pushing the button."  If he were to leave off the 'the' then I say, "I'm pushing the..." and he will say "I'm pushing the button".  It's a constant process of teaching proper language, but one that he is picking up quickly with the constant practice and the push that he needs.  Because, like above, he is capable of it.  He can handle it.  I cannot accept two or three-word phrases from him when I know he can do more.

And finally,

3) Cueing before the mistake is made

Cueing speech means giving either a verbal, visual, or tactile indication of what or how something is supposed to be said.  For example, Kiddo has a hard time saying m and n if it is at the end of a word.  The cue for m is to put two fingers across your lips to indicate your lips are closed for the m sound.  The cue for n is to touch the side of your nose, because the n sound is nasal and vibrates in your nose, and that way the child can feel if they made the sound properly.  

So, since we know Kiddo tends to leave off the m and the n, we cue him as he is saying the word to remind him to add that sound.  

For example, if we want him to say "I'm eating," we say "I'm'' while putting our fingers across our lips to remind him of the final m.  And 9 times out of 10 he does it. But if we forget to cue him, he reverts back to what he's used to, which is simply to say I since the m is hard for him and the motor planning for the m is not wired into his brain yet.  We want to erase the old pattern of leaving off the m and n and so we are working to create a new pattern that overrides the old one, if that makes sense.

It may all sound exhausting or overwhelming, but honestly, I'm finding it exciting because I'm hearing and seeing the growth right before my eyes.  He is saying things that are blowing me away, and I am beyond thrilled to be learning how to help both my kiddos share their thoughts with the world.  

Apraxia Awareness Day

Apraxia.  It's a word that I knew nothing about years ago, but now it consumes my world.  

  

What is apraxia of speech?

It is a motor speech disorder in which the brain has problems planning to move the mouth for communication.  Essentially, the child knows what they want to say, but do not know how to get their mouth to cooperate.  It is a neurological disorder a child is born with, more than likely caused by a missing gene on one of the chromosomes, though it has not been proven.  It requires frequent (meaning 3-5 times a week) and intensive (meaning teaching a child how to produce sounds and words, as well as working on language) speech therapy.  Speech must be practiced frequently to build the neural pathway in the brain for speech to occur.  Most children with apraxia learn to speak with frequent and intensive speech therapy, but some do not.

What are the symptoms of apraxia of speech?

"A Very Young Child

• Does not coo or babble as an infant
• First words are late, and they may be missing sounds
• Only a few different consonant and vowel sounds
• Problems combining sounds; may show long pauses between sounds
• Simplifies words by replacing difficult sounds with easier ones or by deleting difficult sounds (although all children do this, the child with apraxia of speech does so more often)
• May have problems eating

An Older Child

• Makes inconsistent sound errors that are not the result of immaturity
• Can understand language much better than he or she can talk
• Has difficulty imitating speech, but imitated speech is more clear than spontaneous speech
• May appear to be groping when attempting to produce sounds or to coordinate the lips, tongue, and jaw for purposeful movement
• Has more difficulty saying longer words or phrases clearly than shorter ones
• Appears to have more difficulty when he or she is anxious
• Is hard to understand, especially for an unfamiliar listener
• Sounds choppy, monotonous, or stresses the wrong syllable or word"   Taken from http://www.asha.org/public/speech/disorders/ChildhoodApraxia/

Why does awareness matter?

Because a child with apraxia needs to get frequent and intensive speech therapy to overcome it, and the earlier they get it, the better.  But they are not going to get it if their parents and their doctors and their speech therapists do not know about apraxia.  When Kiddo was little and I expressed my concerns his pediatrician kept telling me "We'll just wait and see.  All children develop differently."  And while this is true, a speech evaluation earlier wouldn't have hurt anybody, right?   We've moved several times since we received the apraxia diagnosis, and every time I've had to inform my son's pediatrician about apraxia.  They knew nothing about speech disorders, only about speech delays.

Because a child with apraxia needs a speech therapist that teaches them how to move their mouth (for example, that p, b, and m sounds are said with the lips and how to press their lips together to make the sound).  This is not something that all speech therapists have been trained in.  In fact, I've had not one, but two speech therapists, when they found out I had a child with apraxia tell me "Cool!  I've never worked with it before."  Um no way.  Find me a speech therapist who knows how to work with apraxia and knows that there is nothing cool about it.  I've had another speech therapist tell me she did not believe in apraxia.  Sorry lady.  It is not a mythical thing.  I can tell you it is very, very real.  Most students studying to be a speech therapist are taught what apraxia is, but not how to work with it.  Personally, I find this unacceptable.

Because several insurance companies will not cover speech therapy for children unless they have experienced brain trauma.  But if children with apraxia need frequent and intensive speech therapy and their insurance isn't covering it, that means parents are paying out of pocket ($60+ a session), or unable to pay at all and get their children the services they need to overcome it.  If insurance companies were made aware of this disorder perhaps they would change their policies and provide more assistance to families whose children have apraxia and other speech disorders.

Because more research needs to be done on this disorder.  Is it genetic?  Can there be some type of screening administered so it can be diagnosed earlier?  Would some form of supplementation or medication help children with apraxia?

Because 1 in every 1,000 children is diagnosed with apraxia.  It is considered a rare speech disorder, but you never know if you may come across the 1 in 1,000.  If you have or know of a child with significant difficulties with speech, you now know it is important to get a speech evaluation sooner rather than later, rather than just playing the "wait and see" game.  Early intervention is very important.

Well, actually I do both. ;)

What are my thoughts on apraxia?

I hate apraxia.  There, I said it and even underlined it.  It is cruel and robs you of the ability to know what your child is thinking and wondering about and what they are saying.

Watching your child struggle to do something that comes so naturally to other children is heartbreaking.  Not knowing what your child thinks about about is heartbreaking.  Not understanding something your child says throughout the day is frustrating and also heartbreaking.  Notice the heartbreaking theme here?  Fighting with insurance and paying hundreds, if not thousands of dollars in therapy bills to help your child, no matter how painfully slow the progress may be, seems completely unfair.  Working continually to help your child do something that comes naturally to other children is exhausting and overwhelming.

But the thing that I do like about apraxia, is it is something that can be overcome.  It is something that can be beaten, with lots of hard work and speech therapy.  It will not steal my son's voice forever.  Every day a new word, a new phrase, a new sentence emerges from that mouth.  Every word is a victory.  And we are winning!

And I also would not be the person I am today without apraxia in my life.  Sure, I find myself exhausted daily in the journey to help Kiddo overcome it.  I have struggled with anxiety and depression because of it.  But it has made me rely on God like nothing else in my life.  It has made me celebrate every inchstone and every milestone, every new word and new phrase out of both my boys' mouths.  It has left me broken and yet made me stronger.

I am so proud of Kiddo as I watch him work hard in his therapy sessions and watch him grow and say more every single day.  I feel so blessed to be his mother.  And I pray that this long, hard journey of apraxia molds Kiddo into a man who will do mighty things for the world with all the perseverance and hard work and sensitivity toward peoples' struggles that he has learned already.

My little superheroes, working so hard to learn to speak, with or without capes on.

Did you know Ronda Rousey had apraxia as a child?  She knocked out apraxia with years of speech therapy and now is knocking out opponents.  A fighter and a champion.  

Together, let's knock apraxia out by making people aware that apraxia exists.

Happy Apraxia Awareness Day!!

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).