Tag Archives: diagnoses

Apraxia or Not Apraxia – the VMPAC, Down Syndrome and Apraxia

Our courageous hero underwent the VMPAC (Verbal Motor Production Assessment for Children), which was a formal assessment for apraxia.  He did the entire test in one sitting, and he came out of it smiling.  Amazing stuff!  So, the test got scored, and if Noah didn’t carry the diagnosis of Down syndrome, he would definitely have the diagnosis of apraxia.

But since apraxia is technically (depends who you talk to) a condition only present in the absence of other neurological conditions, Noah doesn’t carry the diagnosis of apraxia.   In fact, because the has Down syndrome, he never really should have been given the test to begin with.  The reason it was administered was because I’ve been pestering his speech therapist to formally assess him for apraxia for a year now.  So, I think it’s safe to say Noah has all the verbal features of apraxia, but he probably will never be diagnosed with it.

The bright side?  Well, the speech therapist Noah has been working with is an expert in PROMPT therapy, and that is the method he has used for the past year.  I searched him out when I became convinced that Noah had apraxia, and I think his use of PROMPT is the exact thing that Noah needs.  So diagnosis or not, his treatment is consistent with that of apraxia.

I don’t know why this issue of diagnosis versus no diagnosis is so important to me.  I guess in a way it’s the first time Noah has been excluded from anything based on his Down syndrome.  Not all kids with Down syndrome have apraxia.  Kids with apraxia do not tend to progress without very specific apraxia therapy.  There are thousands of kids out there who have Down syndrome and are not progressing in speech therapy, and it is being blamed on their Down syndrome.  In talking with countless parents of these children who have not progressed with conventional speech therapy, I am convinced that the majority have apraxia-type symptoms.  They are not being considered or treated for apraxia.  I was fortunate that Noah’s first speech therapist was willing to use Kaufmann cards with Noah, which are part of the Kaufmann Apraxia Protocol.  She too was uncomfortable diagnosing Noah with apraxia, but she was willing to use apraxia materials with him.

This is my opportunity to plead with you speech therapists out there and parents too.

If you have children with Down syndrome who are not progressing with traditional speech therapy, DO NOT WRITE IT OFF TO DOWN SYNDROME.  These super-kids with Down syndrome who are speaking so clearly – I’m betting they do not have apraxia symptoms.  Apraxia is TREATABLE!!!!  If you suspect your child has apraxia, ask for a formal assessment, if for nothing else to get an objective black-and-white record of all his features consistent with apraxia.  And then it may be best to avoid the apraxia/Down syndrome argument, but insist on apraxia-based treatment to address the motor planning and sequencing issues that treat apraxia symptoms.

Speech and language pathologists – I know it’s political, and I know it’s a hot topic, but please, please, please, look at the evidence.  We need to look at apraxia differently, and we need to get objective diagnoses of apraxia even in the context of dual diagnoses.  Children with Down syndrome with apraxia or apraxia-type symptoms NEED apraxia protocols.  We lose such precious time when you dismiss the possibility of apraxia and insist on traditional speech therapy methods.  Look at these kids with an open mind, and if you are seeing apraxia, PLEASE speak up!  Our kids with Down syndrome need SLPs who will advocate to diagnose and treat them no matter what their co-existing diagnoses are.  May I humbly suggest that it is time to redefine the term “apraxia” in order to secure the treatment these kiddos so desperately need?

And Now He is 6

Six years old.  How very far we’ve come.

I feel like I’m supposed to be writing a Disney Land all is well happy birthday tribute about our courageous hero.  But as I felt for most of the first year of his life, my feelings and thoughts are so mixed up that it is difficult to write honestly.

I am blessed today to look into the face of my amazing son and explain to him that today is his birthday.  He points to himself and says “me,” and I’m struck by how many words he can say compared to this time last year.  I’m struck by how he seems to be coming into his own in so many ways.

I worry about the fact that these seem like the easy years.  The years when I can completely meet his needs and control his environment to be so very safe, physically and emotionally.  The years when being at home with all his siblings and me every day is enough for him.  The hardest times are yet to come, I think.

And I remind myself how I look back on the prior years and wish I hadn’t worried so much about what the future would hold for Noah – would he really learn to walk, would he struggle with health issues, would he need ear tubes, would he have friends.  I’m trying to learn from my mistakes, I really am.

I smile to think about how he sat on the kitchen floor this evening and I molded his hands to mimic mine, a full hand of five plus one more makes six.

I sigh as I remember so many times in my life I thought if I could just have this one thing, it will be enough and I’ll know everything is going to be okay.  And I know I do that with Noah too.  If he just learns to walk, I’ll be satisfied.  I won’t ask for anything else.  (He walked at 2.)  If he just learns to talk enough to communicate, it will be enough.  (He’s come so far, it is evident he will be a talker someday.)  If he just can learn to be potty trained.  (He’s almost there.)  If he can just learn to read, he’ll be so much better equipped for life, and it will open so many doors for him.  Oh, if he can just learn to read.

And that’s where it stops.  I can’t imagine asking anything further for Noah, just let him learn to read.

I know by experience that even if he achieves this milestone, before long, something in addition will take the spot of “if only . . .”  But I can’t for the life of me imagine what that might be.

Tonight at grace my husband thanked the Lord for giving us Noah and for the Down syndrome and the impact it has had on our family.  Amen.  (I agree.)

But it doesn’t mean it’s easy.

I spent today reminiscing without meaning to.  So many memories flooding my mind.

The day midway through my pregnancy with Noah explaining to my friend, “I know I won’t have to deal with having a child with anything like Down syndrome, because I know God won’t give me more than I can handle, and I couldn’t handle that.  I’d go to bed and just not get up again.”

“The visit I asked my midwife for seemingly no reason, “Just in case I was pregnant with a child with Down syndrome, would it be medically necessary to have it in the hospital?”  The way she reassured me that with so many healthy babies already and only being in my mid-30s, it was very unlikely I would have a baby with Down syndrome, but if I did a home birth would be fine.  (Looking back, not so good advice, but still an awesome midwife, and still glad I had him at home.)

The letter I sent to my sweet, sweet friend, that explained the difficulty I was having with dealing with Noah’s diagnosis because “He’s broken.  And I can’t fix him.  No amount of child training or homeschooling or praying or attention will ever fix him.”

Being in labor on the bathroom floor when my late-arriving midwife walked in, took one look at me and said, “Oh, don’t push.  Let me get my stuff.”

I said, “No, no, no,” and she said, “Okay – let me at least bring in the oxygen.”  A couple minutes later Noah Courage arrived into her and my husband’s hands.

Watching my midwife lay him on the bed and look him over.  She got a puzzled look on her face and said, “What’s this?” and I laughed and said “his nipple,” and she said, “Oh, I guess it is.”  I never figured that exchange out, but recently I read something that said one of the physical signs of Down syndrome is some type of a nipple abnormality.  Don’t remember the details, but I wonder if that’s what she saw.

Searching for truth on my midwife’s face as I told her, “Look at his eyes.”  The way she reassured me that she knew what I was talking about but that it wasn’t what I thought, he was fine.

The struggle to breastfeed my sweet boy, not knowing he had Down’s, wondering why this fifth child of mine was having such a hard time latching on and staying latched.

All the visits to friends when I would set Noah down in his car seat and if I didn’t tend to him for more than a few minutes, the way he would fall asleep.  He’s just such a good baby I thought.

The extra large space between his big toe and the next toe that I knew was a sign of Down syndrome.

The visit to the midwife when Noah was 3 months of age when she gently told me that he wasn’t tracking appropriately and he was really starting to look like a little Mongoloid baby, and I probably needed to let my pediatrician take a good look at him.  (Guys, I know it sounds terrible, but she said it in such a gentle loving way – she just didn’t get the memo about political correctness.)

The way at 6 months of age I finally insisted on a genetic profile.

The phone call from the nurse who told me the panel came back positive for Trisomy 21.  Handing Noah to Trinity and running to my room to process the information.

So many happy days and happy moments between then and now.  It doesn’t change the grief, but it surrounds it and merges with it to where now it is fluid.  The joy and the grief has no separation, it grows together, each tempers the other.

But am I thankful for Noah?  You betcha.  And am I thankful for his Down syndrome?  You betcha.  It’s like they told me it would be.  “Such a special blessing,” “a gift,” “they bring so much joy.”  It’s all true — and more.  The grief, the struggle, the fear  is equally as true.

And the end of the story at least for tonight is this:

Jessica, Noah’s eldest sister, came tonight for dinner.  I pointed to the name cards we have been working on lately where he matches names like Mommy, Daddy, Jessica, etc.  When he got up from his nap, I told him to go find his Jessica cards and give them to her.  He went to his pocket charts, grabbed both cards that said Jessica and delivered them to her.  No pictures, no cues, no nothing.  He knew that J-E-S-S-I-C-A spelled Jessica.

The fact that Andrew just happened to be standing in the doorway when this all happened and got to see every bit of it made it extra special.  There’s so much progress that Noah makes that Andrew only gets to hear second hand.  It wasn’t just Noah who got a gift tonight.

Blessings,

Alyson