Working Hard

Here are some short clips of Nate working on speaking and reading in complete sentences.  He still struggles with correct use of articles.  Since CAS is a motor planning disorder once his mouth gets going he starts to say things from rote memory (which you can see in this video) when he is creating a sentence about 5 shovels.  He has practiced saying "I see the" or "I see a" so much that when he needs to say something else, it's difficult.  The SLP here uses cards with words or sometimes just dots on a page to represent the individual words.  Since we are working on improving his reading and number identification skills he has been doing more work with print.

(These videos were done in October)

Late Blooming or Language Problem?

I came across an interesting article published by the American Speech-Language-Hearing Association (ASHA) the other day, titled Late Blooming or Language Problem?  It has some useful information about the differences between language problems and possibly just late blooming kids (although I've ready that its fairly rare for late blooming talkers to be without some kind of learning disability entirely--see the book The Late Talker).

The article reassures parents that if you think something is wrong with the way your child is speaking or their lack of speech, get it checked out.  We know our children best.  The wait and see approach to communication is not a good approach.  Language skills are developing so quickly that missed milestones could mean something, that if left untreated or without therapy, could be even more detrimental in the end.

The article describes certain factors that late-talking children who are 18-30 months old, with normal intelligence, may have continuing language problems.  These include:

• gesturing-the number of gestures by "late-talkers" with low expressive language may indicate later language abilities, as it seems those with more gestures were more likely to catch up to peers (this may be a great support for using gesturing and ASL in therapy)
• age of diagnosis-the older the child is when diagnosed, the less positive the outcome...so important as a parent to trust your instincts and get an evaluation and therapy as soon as possible.  I wish Nate had received more intensive speech therapy when he was younger, but all too often I came upon resistance by therapists and doctors to treat his speech delay
• progress in language development-even if a child is delayed in speech, if they are trying to use speech in new ways at least every month, without demonstrating this there may be more language issues than just being a late talker

Some of the research available contrasts other research, as there is still much work to do be done in this area.  

Childhood Apraxia of Speech has general signs according to ASHA--

      

     For young children:

• No cooing or babbling as an infant
• Only a few consonants or vowel sounds
• Problems combining sounds
• May have problems eating

     Older children:

• Inconsistent sound errors
• Understands language much better than they can speak
• Difficulty imitating speech, but imitating is easier than spontaneously speaking
• May grope when attempting to produce sounds to coordinate lips and jaw for speaking
• Is hard to understand, especially for unfamiliar listeners
• Difficulty with fine motor movement/coordination

These are just of some of the characteristics of a child with CAS and those that I listed are the ones that Nate exhibited or continues to exhibit.  I'm glad that I trusted my instincts with Nate, and although I had to keep pushing and researching on my own, he's now getting the therapy that he needs and his expressive language skills are growing every day.

A Session

Although on spring break this week, Nate still has several of his speech sessions to attend. This morning we went to the session at the Truesdail Center. He missed a few sessions last week because of being sick, so he was a little apprehensive when his therapist appeared.  Today was a really good session.  I read the daily notes from his SLPs but it was nice to see him in action as I don't always get to see this. He's working so hard and cooperating, most of the time--he is only 4 after all!

The Truesdail center consists of a long hallway and off the hallway are multiple small rooms that are used for the sessions, each with observing windows where parents or other students can sit and watch. Because he was being shy today, I decided to sit in the room during the session and participate. This SLP in training has begun using a short schedule with Nate, briefly going over the activities they would be completed and allowing him to check them off as they work through them. The menu for today's hour was fishing, squiggly worms, beach ball and then free choice. The fishing game was all set up when we got in the room.  Using a fishing pole with a magnet attached to the end, Nate picks up small foam fishes, about the size of a playing card with a picture of a focus word attached to the underside. So Nate "fishes" for a word and then practices saying it several times. We all took turns with this game and worked on different words with the /b/ sound: burger, boy, ball, bottle. The /b/ sound is difficult for him as he generally makes more of a /p/ sound.

Next was the game squiggly worms. For this game, we played a game that has an apple shape with a bunch of worms and when you turn it on they move up and down inside the apple and you have to try and grab one to match to your card. In order for Nate to get a turn grabbing a worm, he had to practice saying some sounds from a program called Kaufman speech practice cards.  This is a program that Nancy Kaufman, a SLP in Michigan, has created for use with Apraxics and uses at her well known clinic.  They break down words from the most complex (the actual word) into more simple forms.  For example apple (which Nate can say) becomes a-po....a-puh....ah-puh....ah-o.  From complex sounds to least complex in order to work on a target word based on the least physiological effort.  This way, Apraxic kids can start working on communication at their own level as Apraxia requires multiple (multiple!) repetition of a word before connections are made and it becomes automatic.  So Nate practiced words as we all had fun picking squiggly worms from an apple.

When that activity was done, he reviewed his checklist with the SLP and checked off what was completed.  The last task, before free choice was using the beach ball.  The goal here was to have Nate say a word or sound as he hit the beach ball.  We started with "up" as that it a word that is very automatic for him now and we hit the ball around for several minutes.  He loves balls and being physical, so he had a great time doing this.  The next sound was /b/.  It was interesting to watch him as having to coordinate his body and say something.  That is extremely difficult for him to do all at the same time.  It  was nearly impossible for him, but that didn't keep him from trying.  His little mouth would move and twitch trying to get it to do what he wanted it to.  Most of the time he'd say the sound and then we'd toss the ball to him to hit.  We did that with /b/ sound and then the word "ball".  After a successful check off on his list, he chose to play with some cars and had a good time knocking over his SLPs dinosaur as she chased him around the room.  She has a lot of energy which really keeps him engaged.

Since we're on vacation this week, I want to work on posting some new video clips of his progress, so hopefully soon.  He's making baby steps and tries to imitate so much more now that I know things are slowly coming together.

The Journey So Far (Part 2)

So this past fall we saw a couple of different specialists.  One was a pediatric neurologist.  After doing what I think was a less than thorough exam of Nate, his conclusion was that there are late talkers and that he'd be fine.  The paperwork says speech and language disorder (at least it wasn't delay!).  No suggestions for treatment other than to see a developmental pediatrician.

I was pretty apprehensive about seeing the developmental pediatrician, as all the paperwork and information I had received from her office indicated that her specialty was working with ADHD or Autistic children.  I definitely knew that Nate was not Autistic but I figured it would be better to rule it out.  In the mean time, the OT and SLP at Nate's school continued to see him once or twice a week but I had become more frustrated with their lack of knowledge about CAS.  They were sure it was something else.  Mental retardation?  They never said it but it seemed to be what they were suggesting.  It can be so hard to be so sure about something and be told by professionals that you are not right.  I truly believed that it was just their lack of knowledge about this disorder more than my being wrong.  I had also begun reading the book The Late Talker, What to Do If Your Child Isn't Talking Yet by Dr. Marilyn Agin, which has continued to strengthen my thoughts about what is going on with Nate.

When we saw the Developmental Pediatrician, she appreciated that I had filled out the stack of paperwork.  Of course, all this was geared towards kids with ADHD or Autism but I filled it out anyway.  In thinking back on the evaluation, I should have insisted that she work with Nate first and ask us questions later because by the time she got into the room and finished questioning my husband and I, Nate was done.  He was definitely not going to cooperate.  Being that he's not a performer like some kids are, I was praying that he would show the doctor what he could and couldn't do.  She asked him to stick out his tongue, which took him a while but he did.  She asked him to move it side to side and he couldn't.  I had him attempt the word "bubbles" because it was one that he and his preschool's SLP had been working on and he made an attempt, kind of opening and closing his mouth more like a fish.  She thought it was good.  (Are you kidding me?  Good for a 2 1/2 year old??)  I should have had him try to say the word banana because he probably would have just smiled like he always does when he knows it's not something he can't do.  At the end of this appointment I ended up in tears because her response was, "at least he's learning".  I couldn't believe that yet another doctor with years of training and specialization would come up with such a vague answer.  Her report said to continue with present plan and return in 6 months for evaluation.  Another frustrating dead end.

Meanwhile at Nate's preschool he was continuing to thrive and his amazing teachers really become in tune with him.  They understood his mixture of signs, grunts, and expressive faces.  The intonation and vocalizations he makes are really amazing for someone who has no words.  I am thankful that he makes a lot of sounds and is determined to get his point across when need be.

During the months of December and January I started contacting our local school district (and university-more on that later) to get things rolling for an IEP since he would be turning 3 and the home therapy would be ending.  The Late Talker book has so much information and even a chapter on getting the help you need, including a walk-through of the IEP process and all sorts of tips and suggestions.  I also read all the information I could find on-line about the IEP process, both at the Federal and State levels and any other tips I could locate.  I had become a member of both the Childhood Apraxia of Speech, Apraxia-Kids, and CHERUB Facebook pages and read as many discussion boards as I could.  These resources have really helped so that I don't feel so alone in all of this.

In January Nate was tested by the school district's SLP and a Psychologist.  They spent a session at our home and another session was at their office.  I talked with Nate before his assessments, reminding him that he needed to try his best.  As I had mentioned before, he's never been much of the performing type and the more you try and push him to do something, the less he's likely to do it.  He's a very independent guy, which is a characteristic that is helping him cope well.  He did fine with all the assessments and we set the date for the initial IEP meeting.

Now I've never been on the parent end of an IEP meeting and being that I work in public education I was  leery about the process.  I know that school districts try to cut corners, so I was armed and as well read as I could possibly be.  Several other parents on the Facebook discussion boards were cheering me on, so even support from complete strangers helped.  We met as a team and I invited anyone that had worked with Nate to attend.  The team consisted of the school district's SLP and psychologist, my husband, my mother (who helps out tremendously), me, his preschool teacher and his preschool's SLP.  I wasn't sure about the preschool's SLP being there as I never really felt I had her support on the CAS diagnosis, so in a nice way, I asked if she wouldn't say anything.  But during the meeting she acknowledged to the group that I had such strong feelings about the problems with Nate being apraxia and that she had been wrong.  The more she had been reading and researching the more she had realized I was right.  I was blown away.  That really meant a lot to me that she would say that to the group of people that was there.

I was fairly happy with the IEP outcomes.  Just as I had though, Nate scored at least average in all areas except for expressive language.  (Duh!)  So they suggested 2 sessions a week for 30 minutes.  I asked about extending that to 3 times a week and they said I could call an IEP review meeting for that.  I figure I'll wait and see if I can get any additional support from our health-care or the local university's speech center.  I did have to ask for ESY (Extended Year Services) so that he would continue to have some therapy during the times the district was closed for the summer.  I let the team know that I wanted to take the IEP home and reread it before I signed any of it.  I am glad that I did.

It turned out that although we had all believed that the sessions would be 1-on-1 (which is what apraxics require), the IEP stated "group".  I was livid.  When I called the SLP about this, she explained that it was the way the form was set up and she had intended on 1-on-1 services.  I told her that since his IEP is a legal document and would follow him if we were to move, that it had to say 1-on-1.  She made the changes.  I keep waiting for the hard part!  It seems to all have gone too smoothly.  The school district's SLP has attended several classes and seminars on CAS and I know we are very fortunate to have her working with our son.  

I know that he needs more frequent intervention.  He started therapy with the school district about 3 weeks ago.  I haven't seen much of any progress made, but maybe it's too early to tell? 

...
(Part 3 to come....the local university and more specialist appointments!)

Journey

I woke up this morning thinking about my 3-year old and his ongoing journey with apraxia (childhood apraxia of speech). As we continue on this unknown path, we don't know where we're headed. As an organizer and planner, this is so hard for me. Every day we are learning something new about his disorder and about him. We have many questions. What additional therapy might he need? Are we doing enough? What will life be like in 1 year or 5 years?

If you're not familiar with CAS, it's a motor speech disorder. Children with it have problem saying sounds and ultimately words. It's not because their muscles are weak, but somehow the brain has a problem getting the thoughts to come out. Like the lips, tongue, and jaw can't move in the proper sequence or sometimes not even at all. It's as if every word or utterance takes a tremendous amount of thought. Speaking is extremely difficult. At 3 years old, our son has never said mom, cannot say his name or share any of his thoughts. He has found ways to communicate through American Sign Language or his own gestures and sounds and through this we are discovering just how amazing he is.

I've reached out through the on-line forums and found some connections but there are times where I feel alone and want to talk about what we are going through. I decided today would be the day that I start a blog as a way to share the things we are doing, how we are feeling, and connect with others who are going through some of the same things.


So here's to a journey with an amazing little boy.


“One of the hardest things in life is having words in your heart that you can't utter.”

-James Earl Jones