Friday, August 2, 2013

A Small Intervention Is Needed

One day I really am going to tell you all about my family's version of the Amazing Race.
It really was amazing, and it was more fun that I think any of us have had in a long time.
Except for that part where my dad almost killed me.
He hit a speed bump going at least 60 mph.
Crazy man.

* * *

After taking a three month break from all things early intervention, I called and scheduled for speech and occupational therapy to come to our home ... occupational therapy helps Em with eating.
I was hesitant for a couple of reasons: Em made much more progress on her own with eating than she did during her first year and a half with feeding therapy, and I wasn't sure that the speech therapist was a good fit for Em ... and if I'm being honest, I knew she wasn't a good fit for me.

I talked with the therapy coordinator about some of my concerns (which she had heard before) and she assured me that the speech therapist was one of the best.

On Monday the speech therapist came and spent about 45 minutes with Emily and me.
She asked about Em's progress and I filled her in on what Emily has accomplished the last few months: numbers, letters, imitating tones, pointing, etc.

In response, here were the things the therapist suggested I was doing wrong:

-Emily will never learn to talk as long as I allow her to have a binky.  And would I please make sure the binky is not in sight when the therapist is there as it will make her feel better.

-Knowing numbers and letters is nice, but it's not functional.  How will knowing her numbers and letters help Emily learn to talk?  It won't according to the therapist.

-Emily has the wrong toys, and she has too many to choose from.

At the time Em had been playing with two different puzzles - number puzzles that have an age recommendation of 3 years and older, and there was a toy keyboard that she had been playing with the night before.  In the corner of the room was a rocking horse (technically it's a rocking butterfly) that Emily LOVES.

Ems' binky was on the couch, and stayed on the couch until the therapist got a little too close, and Em got nervous.  When she's unsure of something she reaches for her binky.

When the therapist left I texted my friend and said, "Nothing like a little early intervention therapy to make you feel like a failure of a mother."

Later the same day Em's feeding therapist came and I asked him about the things the speech therapist had said.
He disagreed with everything she said.

I came to the conclusion that I was going to print out some information about Em's particular chromosome deletion so that the therapist could see that it was quite normal that Em isn't talking yet.
Em's geneticist told us that speech is the last piece of Emily's puzzle, it will come but it will take time.
I want to make sure that Emily is not just another 'case' to the therapist.

Fast forward to yesterday.

This is going to end up being a long post, and will probably break all blogging rules.
Such is life.

The speech therapist came again because she was anxious to implement a new program with Em.
It's called PECS.  It's a program developed to help kids with autism.
The idea is to help kids learn to initiate communication and be rewarded for that communication, with the goal of being able to say "I want _________" by step four of the program.

In short, you teach a child to use pictures to communicate.  If the child gives you a picture of something, you give them what they are 'asking' for.

The therapist brought bubbles and a toy to practice with.  She showed Em the bubbles, and then when Em acted interested in the bubbles, she stopped doing them, and wouldn't do anything until Emily picked up the picture of the bubbles and handed it to the therapist.

I couldn't say anything to Emily, only help her with picking up the pictures and handing them to the therapist.

Em caught on pretty quickly and played the therapist's game for a little while.
She got bored though, and walked away and the therapist put the bubbles away.
After doing something else Emily came back to the living room, picked up the bubbles, smiled, pointed to the therapist, and took the bubbles to her.
The therapist wouldn't open the bubbles until Emily had handed her the picture of the bubbles.

"Isn't pointing doing the same thing?" I asked.
"She's initiating communication by picking up the bubbles and pointing to you."
"Em is really good at being able to communicate what she needs by pointing," I said.

The therapist said, "Nothing comes after pointing.  She points and then what?  She knows that if she points you will give her what she's asking for.  She won't learn to talk that way," the therapist said.

"But picking up a picture and handing it to you is going to teach her to talk faster?" I asked. "She hands you the picture and gets what she is that different?"

I wasn't trying to be rude or argumentative, truly.  I was just trying to figure out how her system of communication would be better for Emily.

The therapist didn't have an answer for that, and left soon after.

I called my friend who has two sons with autism and talked to her about everything.
She's very familiar with the PECS program, and has used it with both of her boys.
Her boys go to a school specifically for autistic kids and they use the same program.

My friend confirmed what I had been thinking.
The pictures are used for kids who generally don't or can't point to what they need.
At the school, pointing is the next step after the pictures - pointing is the preferred method - pointing is the advanced method of communicating.

I hung up from talking to my friend and felt very frustrated and discouraged.

The therapist is young - it wasn't very long ago that she graduated from school - she has more book experience than practical experience - I understand all of that.
And I know that she wants to help Emily learn to talk.

But so far what she's done is discount all of the progress that Emily has made, and tell me that the things I've been doing instinctively for my daughter are wrong.

Here's where the intervention comes in.

Am I being blind?  Are the things the therapist is saying right and I'm wrong about all of it?
I'm ready to email both the therapist and her boss, and express my frustrations, but I don't want to do so if I'm being the mother that can't take constructive criticism about her child.


Chocolate chip cookies?


Rachel Clements said...

YOU are Em's advocate and YOU have been the one with her day to day grieving her difficulties and celebrating her successes. Don't let that therapist tell you how to be Em's mom and don't let her undermine all of the progress you and Em have made. This is coming from an educator, mind you. Listen to your friend and trust your instincts. You have a right to request a new therapist if you feel the current one isn't giving Em the best service. You also have a right to request a sit down meeting with the therapist and outline your concerns and have them answered.

Stick to your guns.

Dallin Koski said...

This makes me livid! I'm so frustrated FOR you and Em!!! You definitely need a new therapist! One who will listen, respond with understanding, care, take joy in Em's progress, encourage and uplift you BOTH, and continue to educate so you can feel confident in moving forward! How dare she diminish the work Em has done! How dare she act like it's not a big deal, or done wrong, or not 'her' way! It sounds like Em has made some wonderful progress, truly, and you both should feel that positive reinforcement from your therapist. I would absolutely email the therapist and boss and complain and let them know how you are feeling. You have every right to feel that way. And you have every right to work with someone who you both really connect with and love. Clearly this therapist has so so much to learn- the learning beyond the books and classes, etc. She needs to learn how to encourage, support and love. How to see what things she says could be painful and discouraging instead of helpful. I had to switch from one therapist, that just after the first session, I KNEW she wasn't the right fit for Conner, or me. We found someone who we loved and who Conner made so much progress with. I'm so sorry you have been made to feel bad. It sounds like you have done a tremendous job with Em. I hope you can know you are really doing wonderful with her Noelle. I'd love to still get together someone and chat and let our sweet kiddos play :)(this is Annie Staten btw, I'm signed in with a business account).

Misty E. said...

I just read through your blog post about speech therapy. After dealing with my little boy who is now 6 and didn't talk till he was almost 3 and even when he did finally start talking we couldn't understand what he was saying. I questioned many things at that time in my life and wondering if the decisions we had made to work with a speech therapist were even helping. I learned that my intuition as a mother was usually right. You spend more time with them than anyone else. YOu learn to figure out what they need and how they communicate. We went through the whole program of having a speech therapist come into our home to work with him. I will say this I didn't always agree with what they did to get him to communicate. Some things fit, and other things just made it worse. I taught him to sign when he was really little out of frustration in trying to figure out what he was saying and his needs and wants. He did point to things, but they weren't always exactly what he wanted. I did a lot of guessing and spent many hours praying that I would be able to understand what he was saying and meet his needs as a parent. After reading what you wrote, I would voice your opinion if it isn't something you agree with. You know your Emily better than anyone else despite how much training this lady may have, if it's not something you think she will benefit from let them know. I learned to voice my opinion and it did help in many situations. My little guy is doing awesome now, but it's taken a very long road to get him to where he is now. Hope this helps in some way!

jastalfam said...

I think, especially after receiving validation from the feeding therapist and your friend who is well informed on that method, you should speak up! Trust your mommy gut! Emily has gotten far with your instincts, don't question them, cause you are obviously doing something right. If I were you I'd definitely bring your concerns into light.

Beth Zimmerman said...

Aw Noelle ... God gave Emily to you, and gave you, Jason, special wisdom to help you provide what she needs. If the therapist will not listen to you ... SHE needs an intervention! And you need a new therapist! Love you!

Mom on a Line said...

I'm going to forward this blog post to an spl here in Michigan. She works in my daughter's former preschool and specifically trained in 22q. She is awesome and even runs a local support group with her husband who trained with Dr. Spritzen. I'm certain she will comment. You can't train a 22q with therapies for autism. It its not the same. Sending lots of hugs.

Sandra said...

Ok I have no experience with Emily's condition, but I have A LOT of experience working with children with different learning styles/behaviors/issues/whatever you want to call them. And I have even more tons of experience being a mom.

Mom- follow your gut because it is rarely wrong.

You know that Emily will do things differently and on a different time schedule than the so called experts and that is ok because she will do them on Emily's time schedule and there is nothing wrong with that. And if you don't feel comfortable with the therapist or the way she is doing things or that she is not hearing you, then again, go with your gut. Follow it. You are the best expert on Emily that there is so listen to that expert.

(and I agree with you about the pointing and I would have questioned the therapist too)

Follow your gut. It will be the right thing. I promise.

Judy Whatilivefor said...

This is what I would do: I think an e-mail is wise. Start with acknowledging that everyone wants what is best for Emily, then present the therapist and her boss with the knowledge you have gained about Emily's chromosome deletion and how it will likely affect her in her development, and explain what your understanding is of PECS (especially that pointing is the goal in PECS and Emily is already there).

As her mother, you will probably have to fight long and hard, but you know what is best for your little girl. Argue, ask questions, make sure you's your right!

I hope that doesn't sound bossy or something...good luck!

Susan said...

Hi. I've been following your blog for a while, but haven't commented. My son's speech was delayed and he had a speech therapist that was not a good fit for him (or me). He didn't like her and would only suck his fingers and stare at the ceiling when she was here. She actually thought we needed to have him tested for autism because he would never make eye contact with her. We decided that she wasn't the right therapist and called the program director and asked for someone else (a man as it turned out). My son took to him and was very happy to play and talk with him. He is almost 6 now and no longer qualifies for speech therapy. My advice would be switch therapists. She might be great, but she's not a good fit for you or your beautiful daughter. You are doing a great job! Please don't let anyone tell you they know more about your daughter than you. You are with her more and know her much better than they ever will.

Megan Heath said...

Ouch! First and foremost you are an awesome mom and are doing an incredible job with Emily. I feel your frustration as a mom and as a former interventionist. I have taught PECS to many a child and I actually agree with you that it isn't a great fit if she has a lot of gestures like pointing etc. It is a good system for children who struggle to initiate and need to learn cause and effect (ex. "I need to do something to get something.") But it is a painful system which requires you to have pictures of everything she might need all of the time which is really impractical for most kids. I understand therapist s concern about "functional" speech, but I think you are probably right to not invest in that system for your sweet Emily. Trust your instincts. I tried to listen to all JT therapists and take what I could but I learned that I was the expert on my child. If you ever want to chat I would love to help however I can!!

Alexia said...

Personally, I don't think you are being unreasonable. You do your research by talking to people familiar about the programs the therapist is using. I think you have valid concerns and should email the therapist and her supervisor. We all have to learn somehow. . . . .

Marci said...

No one knows your girl better than you do. You instinctively know what is best for her and you. There are hundreds of speech therapists out there and you find the one that works the best FOR you, not against you. Don't let anyone make you feel stupid or ignorant Noelle. You are a smart lady and you love that child and you will know when the fit is right. There are my two cents.:)

Amy said...

First off, I am not trying to discount the good that speech therapy can do for children.

But... I went through a similar-ish situation with my now-five-year old son. He was nearly 3 at the time and was pretty delayed with his speech and had some unusual communication patterns. The pediatrician was concerned and told me to begin speech therapy for him. I'll spare you the details, but we went through a similar rigamarole with the ending being that he caught up on his own.

I'm no professional, but it sounds to me like you and Em know what you are doing.

Allison said...

Ooooo, this makes me angry! I have had 3 speech therapists with 3 different children and I know exactly what you're talking about. I have felt the same way and I wish I had been as brave as you. I have one son with aspergers and 2 who are high functioning autistic. What your friend said is true. The pictures are for kids who can't communicate in any other way....yet. I would say that Emily is doing beautifully with her communication. She can tell you what she wants and needs. Isn't that the point of the whole program? That seems pretty functional to me.
I can tell you what I wish I were brave enough to do. I would email both the coordinator and the therapist and tell them,again,how you feel....and then I would tell them I was discontinuing speech services, that is your right. Ultimately, you are her mother and you know her best. Don't dismiss what your gut is telling you.
And don't let the therapist make you feel like Em is not doing as great as you think she is. Is there still a lot of work to do? Yes. But she's come so far! Way to go Em!

WellaWitch said...

Trust your instincts. You know your child best. It is okay to ask for the help you need and in the way you need it. Express your concerns - you deserve to be heard.

Elizabeth said...

Perhaps the intuition you've been teaching Emily by is guidance from the Spirit. After all, our Heavenly Father knows all of our needs and how to help us meet those needs.

It seems like your concerns/frustrations are founded, but before you e-mail, I would suggest you get information from more than one source. Do your research. Be well armed with knowledge. And then present your case.

In the category of non-informed, aka my opinion, I think that if Emily is communicating her needs through pointing, she's headed in the right direction.

Also, I learned to speak Portuguese without ever learning the alphabet, and it seems to me that the alphabet would have been the best place to start. I remember trying to learn the alphabet later and I never really got it, which leaves kind of a gap.

Keep fighting for Emily. You are who she needs.

xo -E

Janci said...

You are right, obviously. Please make them send you someone else who might be able to help differently. If they aren't being helpful to you, they aren't being helpful to Emily, because YOU are Emily's biggest help.

Janci said...

Also, I have a little one learning to talk. I'll tell you what comes next after pointing. Naming, that's what. She points and she points and she points, and then she names. And yours will, too. So there, speech therapist.

WesternSweets said...

I think you are always a child's best doctor as a mother. So that means best therapist too. You are an awesome mother and it sounds like Emily is doing great because of your efforts. My daughter had a speech therapies come to our home and she never made me feel like what I was doing wasn't good only wanted to help.
Write the letter if you haven't already.

Lisa Lucchese said...

I am not a professional but I would think that now she is pointing to communicate, the best approach would be to say to her - Emily wants MILK - I will get Emily some MILK - and exagerate the word you are teaching. If she points to bubbles - BUBBLES - Would Emily like to play BUBBLES. And really make sure you emphasize the sounds. Eventually, I think she would pick it up. I see no point in the cards unless she is going to be non-verbal forever. Just my two cents. Do not ever doubt yourself.

Elder Cook said...

You & Jason know & love that cute little girl better than anyone. Remember your dream & carry on!

Taylor Family said...

This is a really complicated subject. I am a special education teacher and I work hand in hand with occupational therapists and speech therapists. The thing that stands out to me the most is that sometimes personalities make a big difference.

I can work with two equally trained and skilled therapists, but if just enjoy one's personality better, or if I don't care for one's personality- it really affects our productivity for better or worse.

I agree with the comments stated here. Ultimately- you are Emily's mom, you are with her all the time and you know her best of all. You are a part of the IEP team and your consent is critical and mandatory. If you don't like how somethings happening, you have the right to voice your concerns and the right to accept or refuse those services.

I wholeheartedly support talking to the speech therapist and her supervisor- Perhaps seeing another therapist, or having this therapist mellow out a bit.

Something I do want to throw out there is- that even though you know your child the best- these therapists have their master's degrees in this one specific area. And even though some of them might suck and some might be jerks, the services they can offer are incredible. I have seen children transition from a nonverbal child, to a child that speaks with the help of a speech therapist, and the rest of the team. It's beautiful! Each child is unique and so it can often take a while to figure out how to best help them.

Not in the same way, but I've been in this spot. Only I've been in the therapist's spot. I've had parents that disagree with techniques that I use and sometimes it can get a little awkward. Sometimes one party might be right, the other wrong. And sometimes there is no right or wrong.

Ok so now I'm officially rambling. But what I want to emphasize is that these therapists and educators, while they sometimes might not be best friend material, while sometimes they might not "fit", they have your child's best interest at mind. They are dedicated to your child. They are invested. These are not just 'files' they are beautiful children and wonderful little adults to be. And their priority is to help this children attain the skills they need to be successful in life.

I am sad to hear that the therapists haven't gone smoothly. I hope that things will improve. I hope you find a good fit and I hope that Emily will find her way . That last part I know will happen. Emily is beautiful and brilliant, strong and persevering. She's done so much already and I can't wait to see what else she'll do.

Happy Birthday Emily!

David G. Woolley said...


I saw a picture from Guatamala just now and something said go say hi to Noelle and see how she's doing after so many years. And look what I find. A healthy, happy Emily and you celebrating a birthday.

Of course you're doing the right thing. Therapists are overated. Mom's aren't. I say, pray a lot, act on your maternal sensibilities and inspriation, and if the therapist has something in her small bag of tricks that strikes a postivie chord with you, then use it. If it doesn't click and you check with others, like you already have, and it really doesn't click, then don't use it. Simple as that. You can always learn something from everyone. But that doesn't mean that everything everyone has to offer is a good fit, or is even accurate.

You're a very discerning, on the ball, smart, kind, wonderful mom. That's what will help Emily more than a few therapy sessions. Keep the good. Disregard the bad. You'll know the differenc. I promise. All will be well.

Funny thing. It took me a few minutes to try and remember the blog name. Then it all came tumbling back to me. Because nice really does matter.

You were right.

David G. Woolley said...

PS: I probably won't get back to this place for a long time so if I don't respond, it isn't because I've jumped off a cliff. Promise.