The girl who loved trains....

"....As moths go by and the child continues to remain silent, worried parents consult family,  friends and the pediatrician to receive automatic reassurances...
                    "Don't worry; he's just a late talker"
                    "Aunt Mary didn't speak until she was four"
                    "Einstein didn't talk until he was three."
                    "She'll speak when she's ready."
                    "Just give him time."
All too willing to believe their son or daughter is just a late talker and that sooner or later there will be an explosion of words, parents frequently and happily accept such well meaning counsel.  However, many parents-especially the mother-instinctively suspect there is something wrong."

                                           --from the book "The Late Talker:What to Do if Your Child Isn't Talking Yet"


These words were extremely validating to me.  I heard some of these same phrases when I started to express my concerns and worries.  I'm a 25 year veteran pediatric nurse.  I've been around thousands and thousands of  2y/o's and I know what they are supposed to sound like....late talker or not.

Finally, at Nea's 2 year well child check up I had a conversation with the pediatrician.  She didn't do an entire evaluation but based on the history I provided to her, she agreed a speech therapy evaluation was warranted.  My concerns were:

1)  Minimal vocalizations
2)  Loss of previously known words.
3)  Current vocabulary of less than 20 words-only 5 consistently (Should be at least 100 by this age)
4)  "Looks" for me instead of "calling" for me
5)  No singing or chanting
6)  Lack of interest in books
7) Does not point at objects

We met with a speech language pathologist (SLP) within 2 weeks.  She was absolutely amazing in connecting with Nea quickly.  Nea doesn't warm up to strangers easily (now I think it's because of fear of not being able to communicate), but Diana hooked her in very quickly.

She put Nea through a battery of evaluations.  Of course Nea only thought it was play time with Diana's fun new toys.  She tested out at 15 months for language/speech development.  Whoa.  15 months?!?!  That's 9 months behind...nearly an entire year of language development lost.  Receptive language was not an issue.  Understanding her world was not a problem.  However communicating in that world......

"Try to imagine not being able to say your own name, or not being able to tell your mother that you are hungry or in pain.  Imagine living in a world where you understand perfectly well what people are saying to you. You want to respond to them.  You know exactly what you want to say, but you simply don't have the voice to communicate."  ~~ from the book The Late Talker: What to Do If Your Child Isn't Talking Yet

Reading these words shook me to my core.  And certainly I shed a few tears.  I cannot imagine that level of frustration and I would imagine that many of us would not handle it well.  But there it was.  My bright, intelligent daughter could not express to anyone (including her parents) what her wants and needs were.

But she communicates in other ways.  She maintains great eye contact, she puts things in my hands that she wants me to pay attention to or help her with.  She smiles at me and her Poppa when she realizes we understood the point she was trying to get across.

Apraxia of speech is when you do not have the motor coordination to form words.  Speech is a very intricate system of your tongue, lips and palate all moving along together to form a word.  The idea in your head is there....but the transfer or the "map" is lost for the formation of the word.  My friend Niki (who has daughters with Apraxia of speech) says "think stroke victim...without the stroke"- which is really a good way to explain it to people.  They don't know what causes it in children.  But what they DO know is that early intervention is key.

We've had 2 speech therapy sessions and Nea's apraxia of speech is apparent.  The good news is that she has a lot of "jargon" that she says constantly....none of it intelligible, however.  But her mouth, lips and tongue move freely- essentially practicing.  She spent a lot of time in front of the mirror this week watching her face and lips as she "talked" her jargon.  Again, all good signs.  Some kids with apraxia have difficulty sticking their tongues out of their mouths.

Poppa and I have lots of work to do ourselves.  We have had to pick up sign language again.  We used it when she was about 7 months and stopped using it when she started talking.  But when she "fizzled" out or stalled in speech last fall we didn't pick it back up.  We should have.  So she has to relearn signs as well.  Signing will help her decrease frustration and give her a way to communicate her needs.

We are blessed to have very informative, well educated and well versed SLP's in this area.  Diana's one of the best and like I said...Nea has bonded well with her.  While waiting in the waiting room, Nea grew a bit anxious.  Diana opened the door and said, "Hi Nea....it's time to play" --while showing her the sign for play.  Nea hopped up and walked along right beside her.  For those of you who know my daughter...that's a bit shocking.  I don't know if it's because she feels Diana "gets" her, therefore she trusts her or if the toys are just too fun and she remembers!  Don't get me wrong, Diana frustrates her at times.  For instances, today when  Diana was trying to help her with words -like withholding a train to get Nea to say "choo-choo".   Nea just simply wanted that train in her hand, but Diana wouldn't let her have it right away and focused her attention to her mouth and lips.  Nea eventually just tossed her head back, yelled out (as if to say " #&ck this $hit!") and then got up from the chair to come over to me (sitting in the corner).  After a minute of reassurances, Nea went back to the chair on her own and began working with Diana again.  I find it all amazing to watch.

Waiting for her turn at Pedi Rehab

Today her new word was "blue".  Blue!  Can you believe that I almost burst into tears?  She also said, "go!" and "buh-bul!" (bubble) 3 words today (2 she already had, 1 she learned new) is great progress.  It will be slow, it will be tedious but her Poppa and I will not stop until we know she has all the tools she needs for success.



....and if she says Mama somewhere along the way....I'm not going to be sad about that.