Tag Archives: Speech Therapy

Noah’s Courage – An Introduction

This section was slated to be called Noah News.  In writing my first post here, though, I’m realizing it’s about much more than news.  It’s about a boy whose middle name is literally “Courage” and his courage, his willingness to do hard things and go beyond what is comfortable for him.  So, we’ll move forward with Noah’s Courage.  This is where we’ll keep track of Noah’s progress in speech, language, and learning in  general.   It is as much for me as it is for you.  It can be disheartening to see all the things that Noah still cannot do.  I need to see for myself what he is doing now that he was not doing last week or last month.  If I don’t write it down, I forget.  I forget that he could say only one word this time last year, and now he can say about 20.  I mean, that’s pretty amazing stuff around here.  I need to stay amazed.

A little background might be good.  Noah was born at home with a midwife attending.  In the first minutes after his birth, I told my midwife, “Look at his eyes.”  She knew what I was talking about, as I had questioned her during my pregnancy about the risk of home birth in the event of a baby being born with Down syndrome.  No, I didn’t know Noah had Down’s while I was pregnant; we didn’t so much as get an ultrasound and certainly no prenatal testing.  Just, it was on my heart; and now I know God was preparing my heart first for the special baby he was knitting together in my womb.  My midwife assured me that she saw what I was talking about but it was not “that.”  Noah was born with good Apgars and did well in the days following his birth.  The only problem was that he did not nurse well.  He would start to nurse, and then his little tongue would get in the way, and he would wind up sucking on his tongue.  The Monday after he was born (he was born 15 days earlier than expected, so my prenatal labs were in route at the time), my prenatal beta strep test came back positive.  It’s unusual for that to be a problem, but doctors and midwives take it very seriously, because when it does create a problem for a newborn, it’s deadly.  They treat it by giving the mother antibiotics, and those antibiotics get passed on to the baby in labor.  I’d never been positive before, so we didn’t even think about it.  But with Noah having feeding problems combined with my positive beta strep, we wound up in the pediatrician’s office that Monday morning.  Labs were drawn on Noah to rule out beta strep for him, which did in fact come back negative.  What the lab did find was that Noah was dehydrated, and knowing our conservative approach to medicine, the pediatrician had us take him home as long as we promised to supplement with formula and bring him back in to make sure he was gaining weight.  That went well, and although Noah continued to struggle to nurse, I stuck it out because I had no reason to think he couldn’t nurse.  Over the next few months, Noah was seen a little more often than usual to make sure he was gaining weight, and we did share our concerns about Downs with the doctor, but he assured us that while he could not guarantee that Noah did not have Downs, he felt very confident that if Noah had Downs, he would be showing more symptoms.  He felt the low muscle tone would be more pronounced, he expected to see a simian crease, he expected more dramatic developmental delays, etc.

It was my midwife who saw Noah at 12 weeks I think it was who knew something was not right, he wasn’t tracking like he should, and she saw his Down’s facial features.  She also picked up on his very slight heart murmur, another red flag for Down’s.  She told me what she suspected and urged me to take Noah back to the pediatrician and have him take another look.

You know, for me, I didn’t want Noah to have Downs.  I wanted a healthy, whole baby who could be anything he wanted to be, do anything he wanted to do.  I wanted a baby with unlimited potential.  So when his pediatrician indicated he still thought Noah was fine, I believed him.  Of course, I was going back and forth at the time.  There were days I felt sure Noah had Down’s and others I was sure he didn’t.  I worried about all my babies when they were newborns for one reason or another, maybe this was no different.  I spend hours and hours on the internet researching Down syndrome, just in case.  I had sweet friends at church who tried to support us during this time, telling me that if it turned out he had Downs, we would be so blessed.  “Those children are so loving, so special.  They bring so much love into their families.”  I didn’t want special, the love a typical child brough into a family was plenty for me.  I felt like I was in limbo somewhere between a typical child and a child with Down syndrome, and they were rooting for Down syndrome.  I was not.  I was rooting for normal.  Normal was good.  At Noah’s 6-month check-up, I wasn’t believing the pediatrician any more, and we had him draw the blood for genetic testing.  It came back positive – the very worst day of my life.  I was crushed.  I was not equipped.  For all the dark days I’ve had in my life, this day was the darkest.  My “perfect little family” wasn’t “perfect” any more.

After a few days of grief, I did what any mom would do.  I started making phone calls, starting with Early Childhood Intervention.  They came, told me Noah was so “high functioning” he only needed OT once a month, a one-time nutritional consult and did not need physical therapy or speech.  (Note:   While I believe Noah should have had much more therapy and that ECI was wrong to deny him that, I do not think the lack of therapy has harmed him in the long run.  I would encourage anyone using ECI to obtain an independent evaluation to determine an appropriate frequency of services.  You may have to fight to get what you want, but your tax dollars are going to support these services, and you deserve adequate care for your child, not the very least ECI feels it can get away with.)

The OT was great, but only once a month, and once he started walking we lost her and gained a physical therapist.  I should add here that Noah’s speech was nonexistent.  He was a silent baby, no babbling, no cooing.  He had absolutely nothing to work with, so I was not very interested in speech therapy anyway.  Once the speech therapist came, she taught us a few signs and brought some bubbles.  The signs we picked up on and have gradually added more.  I was not very impressed with the bubbles, and neither was Noah.  I have read and heard that most babies and toddlers with Down syndrome respond well to speech therapy, they progress from bubble blowing to making noise to babbling to talking.  Noah was still silent.  I believe now that this is probably due to his apraxia; and I do not regret the decision not to pursue speech therapy.  With our busy schedule and his lack of interest, it was not a good fit.  So he didn’t say vroom when playing with his cars, didn’t say choo choo, didn’t imitate  noises, nothing.  For four years, nothing.  ECI stops at age 3 and children with special needs are absorbed into the school system.  We chose not to pursue the school system, we have good insurance, and Noah was not seeming to benefit from therapies.  So he had none between age 3 and 4.  We started pushing sign language sometime before he turned 4.  For a long time it was just “more”, “eat”, “drink” “milk”.  At around age 4, he started to seem to want to communicate more, and through www.lifeprint.com, www.aslpro.com, and the book Signing for Instructional Purposes, I was able to learn a good number of signs, and he was a good learner.  By the time he was 4-1/2, he had a signing vocabulary of  about 50 words, and by June of 2011 he was starting to vocalize and had said his first few words (purple, mama, papa, blue, moo) as well as nine word approximations (please, deer, tuh, juice, milk, woof, baa, up, and more).  It was at this point that I felt something could be accomplished in speech therapy, and we had a great therapy center right in the town where we live.  We love Noah’s speech therapist, and he has had a few months of physical therapy as well, with a fabulous physical therapist.  We have a family friend who was once a speech therapist.  She comes to the house on occasion to play with Noah and gives him language-rich play time.  I have found this also to be beneficial.  Noah seems to respond well to her style of play, and I think putting him in a variety of environments stimulates his desire to communicate with sign and speech.

At this point, Noah picks up new signs every time there is a new one introduced.  He has a strong desire to communicate, and even when he doesn’t know the sign, he usually finds a way to get the idea across.  Speech wise, most of Noah’s speech is only in response to imitation or at the very least cueing with questions or gestures.  But I have hope, because at this point a lot of his signing is spontaneous, but he first only signed in imitation or responding to cueing as well.   I want Noah to speak; I am hopeful and am planning for speaking to be Noah’s primary mode of communication.  One of the things I’ve noticed about raising Noah is that in most learning experiences, Noah needs baby steps.  He cannot progress from hearing words to saying words, like typical children can.  This is true of many children on the autism spectrum as well.  Sign language and PECs are those baby steps for Noah.  We look forward to walking those baby steps with you.  Drop us a line, let us know who you are and where you are at on this journey.  Neurotypical, special needs, Downs, ASD, therapists, parents, relatives, friends, even the curious – you are all welcome here.

And I almost forgot – how could I forget?  Today I find myself so thankful that the Lord gave us a child with Down syndrome.  Noah makes our family three-dimensional when we didn’t even know we were two-dimensional.  He reminds us that God’s ways are not our ways, and he has taught us that God’s plans for us are so much better than our plans for ourselves.  Noah’s laugh, his smile, the way he comes and snuggles in bed with us each morning, they all give me reason to rejoice.  And the joy and thanksgiving that comes with each new thing that Noah masters is beyond description.  I love what God loves – and God loves Noah!!!!!  And you know what?  He loves you too!  Be blessed.

Where I’ve Been and Why I’m Here

 

Don’t let the med school textbooks fool you; little boys with Down syndrome are VERY clever.

Welcome to our journey through speech acquisition – all things visual – sign language, PECs and anything else I can find to help my little boy learn to speak.    The special needs community is discovering more and more every day about the incredible visual skills children with autism and Down syndrome have.  There is also much to be gained by making learning visual for everyone.  I have seven students in my family homeschool, and I’m all about finding every opportunity to use picture cards to get things organized, functional and fun around here.

As an added bonus, my 5-year-old has Down syndrome and an additional diagnosis of apraxia of speech.  Apraxia is a motor planning disorder that basically means Noah has the muscle strength and coordination needed for speech production and he knows what he wants to say, but the connection between his brain and his mouth is short-circuiting.

The good news is that Noah has an American Sign Language vocabulary of about 150 signs.  Using Total Communication (sign language plus -NOT INSTEAD OF- speech) has helped Noah to be a great communicator.  Language is about so much more than the ability to verbalize orally.  Remember that – it’s going to be very important.  Never give up on speech.  The use of picture cards and signs lay a very important foundation for communication, sentence structure, and vocabulary.  Used long term, they can be an anchor and a prompt for speech.  There was a time I hoped that Noah would outgrow signing and picture cards, but in being exposed to adults with disabilities, I realize that what we are doing by teaching sign and picture card usage is we are equipping our special ones for life.  When Noah starts a job, mows the lawn, does the dishes or goes shopping for the first time,  picture cards and boards will be a tool he can use to achieve success and independence.  When he gets confused or forgets what to do next, he can use his picture boards much the way we use directions.  He won’t have to be at the mercy of my attention or anyone else’s.  Like a hammer for a carpenter, a map for a traveller, picture cards will be a tool, a means to a very productive end, no matter how “high-functioning” or “low functioning” he is.

Noah is also very bright.  As his teacher, I want to make sure that his speech delay does not interfere with acquisition of skills that he may otherwise be ready for.  He has been diligently learning preschool concepts despite the fact he is just beginning to speak.  His speech therapist has been using picture cards consistently with him, and after watching her for six months and wandering around mrsriley.com, I’m finally getting the hang of it.

In the next few weeks, I will start posting articles and links to the picture boards that are instrumental in Noah’s acquisition of pre-school skills such as matching, color identification, following directions, opposites, part to whole, counting, action words and categorizing.  We’ll also be talking about using picture cards to teach not-yet-verbal children to read, YES-TO READ!!!!!!  And, of course, we’ll explore using picture cards more generally to offer choices, learn routines and sequence events.  Mrsriley.com members will have access to and the ability to print all the files I’ll be sharing.  If you’re not a mrsriley.com member, you STILL get access to all the files.  If you want to print them, they will allow you to register for free and you’ll get 24 hours to download all my files, plus everyone else’s, plus all the ones you can make in 24 hours.  Cool, huh?    If you are not yet familiar with www.mrsriley.com, mosey on over to their website and have a look around.  It’s a great site that not only provides a huge selection of ready-to-print picture cards and boards, but also gives you the capibility to easily upload your own images and photos and then turn around and create your own picture cards.  Oh, and did I mention if you decide to join, it’s only $5 a month —- And they’ve got the best customer support EVER?????   And the members share files, so you have access to everyone else’s files if they choose to post them publicly, and new public files are added every day?????

From time to time I’ll be posting “Noah’s Courage” which will be updates on Noah’s progress.  I’m excited about that because it will be a written record of how far we’ve come since going visual.  I’d love for you to use this space to share how you are customizing these ideas and files to fit your own needs.  Let us know how you’re using your picture cards, no matter how you’re making them.  Just hit the comment button at the bottom of the blog and type away.  Gotta love how we’re all in this together.  And a big thank you to www.mrsriley.com for making my entry into visual learning so much fun.

Talk to you soon.

Alyson