Two weeks ago, we had our annual IEP meeting for Lewis.
We sat at the preschool a few days before he turned four and decided he no longer qualifies for direct speech therapy.
This may be why:
Music to my ears.
November 7, 2012
Two weeks ago, we had our annual IEP meeting for Lewis.
We sat at the preschool a few days before he turned four and decided he no longer qualifies for direct speech therapy.
This may be why:
Music to my ears.
January 31, 2012
(note: I was tagged and asked to contribute to an IEP meme on Solodialgue – a way of sharing our experiences and knowledge of the process. She’s an amazing writer and our kids are a lot alike, so I couldn’t say no. Here’s my contribution.)
I was out for drinks the other night with some friends. And as much as we tried to talk about ourselves, the conversation floated back around to our kids.
I had just had our annual IEP meeting for Howie. We were also going through his 3 year evaluation as well.
I told my friends about the meeting and about how I thought it went really well. The discussion around the table was about how to make things work for Howie in school in a truly individualized way. The actual definition of an Individualized Education Plan. I went through the ins and outs of our new plan, why we made the changes we did, and how I feel like we’re all in a good position now to help Howie move forward.
“You made that happen.” my friend said. I was a little startled, not quite knowing what she meant.
“It’s because you came to the table in a respectful and smart way. You advocated for Howie and you knew what you were talking about. They all understood that around the table.”
It was quite a compliment. One that I will readily accept.
I need to be a major player on the IEP team to make sure my kid gets everything he needs to help him succeed in school.
I could share the details of my son’s IEP here, but since every child is different and has different needs, I thought I’d go a different direction.
The IEP meeting itself can cause stress and anxiety for weeks leading up to the day, and the meeting itself can be quite daunting. It’s usually the parent(s) and then any number of therapists, educators, and administrators sitting around a big table. You’re discussing the most intimate and detailed issues about your child. It can get emotional and painful quickly – on both sides.
I have worked hard to get to a place of mutual respect with all players on my son’s’ team. So I thought I’d share how I’ve been able to make our IEP meetings successful so far.
I’m not talking bringing cookies and coffee to the meeting.
I’m talking work. For me.
I have to do my homework: The IEP meeting can get overwhelming quickly as terms and jargon get thrown around the table. Before our first meeting for my son three years ago, I asked a friend to send me a copy of her son’s IEP. Not so I could copy it, but so I could learn the language used. I understood that a flowchart would be used to determine my son’s eligibility for special education programs based on his autism diagnosis. I became familiar with the different parts of the “grid” and delivery service methods. I went to sites like Wrightslaw to understand the process. And each IEP meeting, I make sure I know what each goal means and how he’s been progressing on them. So that way, when our OT says “I’m going to move myself from the ‘C’ part of the grid to the ‘A’ part of the grid” I know that means that Howie no longer needs direct OT service work, but that she’s adding herself as a weekly consult to make sure his sensory needs are being met in the classroom every day. Or when the BCBA says “We’re going to start taking more ABC data on Howie to better track his behavior issues” I know that means Antecedent/Behavior/Consequence data. That way, we’re not taking time to go over the details of the words in the meeting so we can have more time to have a philosophical discussion of what that means for my son. I also make sure I have read every report they have sent to us and have copies of the reports with me at the meeting. I need to be as prepared as the other people at the table.
This also means filling out any and all paperwork that they send me. For Howie’s evaluation, I had to complete a number of speech/language home assessments and a new sensory profile. I did it the day I got them. If I didn’t, I’m pretty sure I would have lost them in the sea of clutter in my house. The therapists appreciated how quickly I got them back, because it makes their job easier too. In our meeting, our special education director complimented me on returning the IEP meeting acceptance form and thanked me for answering the questions. He said “Most parents just check off that they will be here. They don’t take the time to answer the long term/short term goals questions, or write down what their child’s strengths and weaknesses are. You help us by answering those questions.” I can’t imagine NOT answering them.
I Know The Players: The names and titles of the people sitting around the table can be daunting : physical therapist, occupational therapist, school psychologist, special education director, etc. But they are also regular people who play an important role in my son’s daily school life. I need to know who they are and what they do before that meeting. Howie’s OT has been working with him for three years now, and over those years I’ve gotten to know her well and she knows me. So when she tells me in the above example that we’re dropping OT direct service, she looks right at me and says “We’ve been talking about this for a year. He has met all his goals in amazing fashion” I know she’s telling me the truth and I trust her judgment. Our speech/language pathologist is the same way. She lives in my neighborhood and I wave when she goes by on her daily walks in the summer. We stop and chat when we see each other. Our special education director has a son who was in Howie’s preschool. I send thank you emails. I drop in to school and say hello. We have monthly meetings with his classroom teacher and BCBA to check in on how things are going. I know them, and they know me. They know my other two boys. We aren’t strangers. So when I walk in that room, there are no surprises and no unfamiliar faces.
Because we know each other, they know I will be as honest with them as they are with me. I will give them the information they need to help my kids. I made sure they had a copy of Howie’s recommendations letter from his developmental pediatrician before the meeting so they could read her suggestions and ideas. I have been upfront about the fact that we have home behavior services now for Howie, and have even had his consulting therapist go into school to observe him there. I’m not holding back, and I expect the same from them.
Because of this trust, they know I’m actually looking for information to help with Howie at home when I ask for weekly reports on his OT and social speech sessions and daily logs from his aides. It’s not that I don’t trust that it’s happening, it’s that I want to be able to continue his work at home in a way that he understands.
I Know My Kid: I am fully aware of my son’s strengths and challenges. I’m not under any false impressions about his behavior, nor am I ignoring the progress that he has made. So again, I know it’s okay to drop direct OT service from his IEP this year. I know he has met his goals because I see him write, color, cut, fasten and zip every day. I also know that his sensory challenges are not managed appropriately by him in school or home. So I would never agree to dropping access to the OT room or a weekly consult to train staff to implement his sensory diet. I’m also in full agreement that he needs weekly social skills session taught directly by the speech/language pathologist. And I would never – at this point – agree to giving up his one-to-one aide, nor would I give up his extended year summer program. And they know that. It’s not about picking my battles here, it’s about knowing what my son needs. So I’m not going to argue for services that aren’t appropriate. But I will push for any and every service he needs for success at school.
I’ve learned to use direct and unemotional language in the meetings, but never letting them forget that we’re talking about an amazing 5 year old boy. Our goals as a team are the same – to help my son succeed. We’re all on the same page.
It’s still personal. It’s still about my son.
My son’s team knows this and it leads us to creating a respectful discussion around the table. We may disagree but we when we do it’s about the issues and not about personalities.
I have had to do a lot of prep work to get us to this place. But it has yet to feel like they are out to “get us”.
I’m not naive enough to think that this is some magic formula for the perfect IEP meeting. I know that my experience, unfortunately, is not the norm. I have friends who have done everything right and still end up fighting to get their kids even the most basic of services. Money, personalities, and a million other factors can make IEP meetings miserable for all sides.
For me, the key has been realizing that I am equally as important as all the other people at that table – maybe even more so. That is my child we are talking about. His successes, his failures. When he succeeds, we’ve done our job. When he doesn’t, it’s not because of something he did. It’s because of something we as a team didn’t do to help him. I will make sure that his support team loves him and respects him as much as I do.
Our team is now heavily invested in helping my son reach his potential. They want to see him smile every day.
That is our number one IEP goal.
“Life is very short, and there’s no time
For fussing and fighting, my friend.
I have always thought that it’s a crime,
So I will ask you once again.
Try to see it my way,
Only time will tell if I am right or I am wrong.
While you see it your way
There’s a chance that we might fall apart before too long.
We can work it out,
We can work it out.” – We Can Work It Out by The Beatles
October 6, 2011
That’s how long Lewis has been working with his speech therapist through Early Intervention.
Their last appointment is coming Wednesday. He’s turning three in two weeks.
When they started, his delay was quite noticeable. I could understand about 50% of what he said. Others…not so much. Getting services for him was a delicate dance – the SLP had been in at 18 months. Then 2 years old. Then finally again at 2 1/2 years old.
In June, two word sentences were hard to understand. He could label, but not complete phrases. Many consonant sounds were missing. No subject-verb configurations. And as their sessions went on, other things became apparent. Limited play skills. No eye contact. Difficulty maintaining attention. That all brought us to August and our developmental evaluation and the eventual PDD-NOS diagnosis.
Even in that August appointment, the gap between his receptive and expressive language was quiet apparent, as they noted several times throughout the report.
I took this video yesterday. Four months after therapy.
A “what” question in “What Mommy?”. An “I” statement in “I swimming” and “I can’t swim”. A conversation “Because it’s broken”.
Pretend play with goggles, swimming on the blue rug.
I showed this and another video to his speech therapist. She was shocked. And happy. And a little teary.
As was I.
My son is a perfect example of how a little bit of early help can go a long way. We are so grateful. And so proud of all his hard work to get there.
Now we have a lot of happy talk in our house. His voice is music to my ears.
“Happy talkin’ talkin Happy talk
Talk about things you’d like to do
You’ve got to have a dream
If you don’t have a dream
How you gonna make a dream come true ” – Happy Talk from the musical South Pacific
Side note: I took this video and many others on our iPad. I truly believe that our iPad aided in my son’s success in learning appropriate speech patterns. He’s a whiz on the iPad and thanks to apps like “Speech With Milo”, “AlphaTots” and others like those, he learned sentence structure and letter sounds in a way that made sense to him. I’m saddened by the loss of Steve Jobs for many reasons, but the impact he had on the special needs community is immeasurable. On a personal note, he died too young from the same cancer that also took my dad too young. Just as I am grateful for the 13 months post-diagnosis that we had with my dad, I join with the world in being grateful for the years post-diagnosis we had with Steve Jobs. This family thanks you for your vision and for your faith in your products that changed an entire community.
July 29, 2011
What am I missing?
I’m sitting outside of the preschool watching the playground. It’s the second day of “Circle Time Camp”, the camp for all the kids attending preschool for the first time in the fall. I’m watching Lewis. He’s running around the yard, going up the ladder and down the slide, reaching his hands up high to hang from the monkey bars. When camp is over, he follows the other kids to the bench and waits for his name to be called to go home. He sits with his hands in his lap, nicely waiting his turn.
What can’t I see?
On Monday, I’ll be taking him for his developmental evaluation at a hospital in Boston. It’s the appointment that I canceled back in March, when my gut was telling me that there was nothing wrong. It’s the appointment that I rescheduled after his early intervention speech pathologist suggested that he needed to be evaluated. He’ll be seen by a developmental pediatrician and a speech/language specialist. I’ve filled out all the forms and arranged for child care for the other boys. We’re actually going this time.
But I don’t want to go. I don’t want to hear what they have to say. I don’t even know what to say to them.
I have watched him carefully since I made the appointment, looking for red flags or something that makes me feel like the appointment isn’t a waste of time. He has a speech delay. That I know. I’m watching his eye contact, his pretend play, his transitions. I asked those who know him to tell me honestly what they see.
They see my little guy. Nothing else.
When we did this with Howie, I knew there was something wrong. Something “off”. I expected a PDD-NOS diagnosis. This time…what is it?
This appointment is making me question everything I know as a parent. He was my surprise baby. I have watched him like a hawk since day one. Checking off the milestones on the list, including all the ones his brother missed. He’s my eater. My sleeper.
“Mom? How come all the other little kids at the family reunion could say their G sounds better than Lewis? Is it because Howie doesn’t use his right words and he’s copying him? Or is there something wrong with Lewis too?” My oldest’s words swirl around my head.
I’m not only challenged with figuring out if his behavior is that of a typical 2 1/2 year old or if there’s something developmental different about him. I’m also challenged with determining if it’s learned behavior from his big brother.
I’m the one who called Early Intervention three times to come out. I’m the one who knew that he wasn’t talking like he was “supposed to”. How could I be missing seeing something else? How many more labels will be added to the end of this child’s name?
I know the labels don’t change him. I have said it a million times to friends, family and other parents across the internet. The label does not make him anything else but who he is. All it does is get us the help he needs. That we need.
It’s easy to say. Not easy to remember.
It won’t matter what they tell me. I’m going in with an amazing, smart, funny little two year old and I’ll be coming home with the same kid.
It does matter. It matters a lot. I don’t want to do this again. I am not sure I can do this again.
I have to do it again. For him.
We have to know. And then, move on.
“If you put your trust in me I’ll make bright your day.
Look into these eyes now, tell me what you see.
Don’t you realise now, what you see is me.
Tell me what you see.
Listen to me one more time, how can I get through?
Can’t you try to see that I’m trying to get to you?
Open up your eyes now, tell me what you see.
It is no suprise now, what you see is me.
Tell me what you see.” – Tell Me What You See by The Beatles
June 14, 2011
If life had a “rewind” button, I would have used it today.
The day started out as an exercise in logistics. Gerry woke up with ear pain, which I knew was serious considering his class was going bowling this morning. Somehow I needed to get him to the doctor after driving Howie to school and before Lewis’ speech therapy appointment at the house. Already late for preschool, I was on the phone with the doctor’s office while simultaneously trying to get out the door with three non-compliant boys. And my car keys? Nowhere to be found.
Yes, for the second time in 48 hours, I had misplaced them. Completely.
I found my spare keys by some miracle and pushed the kids out the door. We had to be on time. Howie’s class was going up to kindergarten for the last visit, and he was taking the big yellow bus. Since he won’t be taking it in the fall, we didn’t want to miss this.
I quickly dropped Howie off and flew to the doctor’s office. An hour later, we were out the door with “it’s just a virus” and made our way back home with 30 minutes to spare before Lewis’ speech therapist arrived. Just enough time for a snack and a very quick house cleaning. By that I mean I picked up all the Hot Wheels track in the living room so they had a place to sit. I do not mean that I cleaned up anything else.
About 30 minutes in to the speech session, the phone rings. It’s preschool. My heart jumps into my throat.
It’s Howie’s teacher. They’re just back from their kindergarten visit and she wanted to fill me in. For this visit, they purposely went when the cafeteria would be busy…and smelly. They wanted Howie (and the other kids) to experience this first hand to see how they would react.
Apparently Howie reacted by stopping in his tracks halfway down the hall, and covered his nose. For the whole hour. The smell of bacon and french toast cooking hit him hard.
This wouldn’t be such a big deal if, of course, his new kindergarten classroom wasn’t directly across from the cafeteria. This smell aversion will be a daily occurrence once school starts in the fall.
On the phone, we immediately brainstormed some plans of action. Social stories about smells. A “smell desensitization” program starting this summer at home, with us cooking different foods. Buying stock in Yankee Candle.
I hung up the phone and my wheels were spinning. Just like any autism parent, my brain immediately went into fix it mode. I sent out e-mails asking for advice from my fellow autism moms. I was on it 100%.
Then, from the other room…
“Alysia, do you have a minute for a question?”
It’s Lewis’ speech/language pathologist. Who I adore. And this sounded bad.
“How do I ask you this without stressing you out?”
“How long do you think it would take you to get a full developmental evaluation set up for Lewis?”
What? You mean like the one I canceled back in March because I thought everything was fine? Say that again?
“I’m seeing things that worry me. More, I’m NOT seeing things. Have you noticed that when he plays he gets fixated on one thing? I kept trying to move on from the fruit but he won’t change gears. And he’s only imitating me with play, he’s not initiating the play.”
I don’t know. I was so focused on the fact that he was “pretend playing” at all that I never noticed HOW he was playing.
“Does he make eye contact with you when he asks you for things?”
The better question is, do I make eye contact with HIM? I don’t know. I usually have one eye on his brother making sure no one is getting into trouble…
“I just thought it was best to talk about it now, and not 5 months from now, in case it takes you a while to get an appointment. He’s a big imitator. I’m not sure how you run your house in order to help your other son…”
You can stop right there. I don’t run my house at all. Clearly. And yes, I have no idea what’s going on either. Is he imitating his brother or is this his behavior? He’s the polar opposite of Howie. Receptive language is right on target, expressive language is behind. Howie was the reverse. With both, behavior is a struggle.
And no, I have lost all concept of what is “normal” anymore.
I e-mail my friends with this update. One friend writes me back “Deep breaths. And chocolate.” I reply that I’ve already inhaled an entire box of cookies.
I make two quick calls to “reschedule” the appointment that we canceled back in March. But no time for tears or wallowing, because I had to pick up Howie for an appointment with a pediatric urologist. An hour away.
I run out to the car. Tim has thankfully come home to be with the two other boys. Turn the car on, warning bells ring. I have a brake light out.
I call to Tim: “My left brake light is out. Will that be okay?”
His response: “It’s going to have to be.”
We were, of course, late for the appointment, partly due to traffic and partly Howie became fixated on the revolving doors at the hospital. In the waiting room, the questions became repetitive. “Why am I here?” “Remember when it hurt when you peed a while ago?” “But I’m better now. Why am I here?”
The doctor’s exam was quick and he was quite good with Howie. He turned to me and we began to chat about how to keep this from happening.
“With kids like him, this could be a recurring problem.”
Kids like him?? What does he mean?
I turned and looked over at my son. Spinning, pacing, rocking back and forth on his legs. Flicking his fingers. Babbling nonsense words.
Oh. Kids like him. Kids with autism.
I wanted to cry.
I thanked him for his help and told him we’d be in touch for our next steps. The ride home was an exercise in perseveration – there was a bridge at the doctor’s office near the parking garage. He wanted to run on it. I had no idea until we were already on the highway. Forty minutes of “Turn this car around!” and “I’m going to ruin your life!” and “Mom, you’re so ANNOYING!”
(chances are, this won’t be the last time I hear that.)
The next several hours were completely unsettled. I lost track of how many times time outs I issued.
I’ve been spending the rest of this night eating my mint chocolate brownie (graciously delivered by my amazing friend) and thinking over the day. Everything just seemed to pile on. But I kept going back to what Tim said about my brake lights when I asked if it was going to be okay.
“It’s going to have to be.”
And that’s what I have to remember. That no matter what comes our way, we’ll figure out how to make it okay. Whatever steps we need to take to make things right, we’ll do it.
It was just one bad day, right? Just one bad day.
“Sometimes the system goes on the blink
And the whole thing turns out wrong
You might not make it back and you know
That you could be well oh that strong
And I’m not wrong
Cause you had a bad day
You’re taking one down
You sing a sad song just to turn it around
You say you don’t know
You tell me don’t lie
You work at a smile and you go for a ride
You had a bad day
You’ve seen what you like
And how does it feel for one more time
You had a bad day
You had a bad day” – Bad Day by Daniel Powter
March 11, 2011
Umi-goggles on! Little Bear? You see Little Bear, saaaaaay LITTLE BEAR!
I made the call. But this time it was to cancel an appointment, not make one.
The quote above? From my 2 year old Lewis. He’s not just talking now. He’s speaking, having conversations, and using lines from TV shows and making them his own. This spontaneous phrase combined a line from the Nick Jr. show “Team Umizoomi” with a picture from his Little Bear toothpaste container. He put his arms up to his eyes for the goggles, and tried to look for his toothpaste.
The canceled appointment? His scheduled meeting with the zero-to-three developmental clinic for an autism evaluation.
The appointment had been recommended to us by Howie’s developmental pediatrician when I expressed concerns about Lewis’ language delay. Remember her? She’s the one that called me “Super Mom“. At the time the appointment seemed like the fastest way in to see a speech/language pathologist, but she also mentioned that a full evaluation would be a good idea, considering Howie’s diagnosis.
It took me a long time to send in the paperwork. I couldn’t put Lewis’ picture on the forms. I couldn’t go through it all again.
But I finally put the package in the mail. Without the picture. And two weeks later I received the appointment date and time. March 21st.
In the time since I mailed the papers, we’ve seen an explosion of language and development. And now, I see none of the red flags of autism. None.
I see pretend play as he zooms a car around the house and makes rumbling noises, or pours me a cup of pretend tea. I see the ability to follow first/then commands and multi-step directions when I ask him to get his shoes, bring them to me, and then we’ll go outside. I see tantrums caused by his inability to have a toy rather than meltdowns triggered by his inability to control his body. I see him look me in the eye when we talk and I feel him hug me out of love. I see an understanding of emotions when he draws a happy face and labels it “happy!”.
Yes, he’s drawing. Recognizable faces. And he can make the letter “L”. From following my instructions.
All the “appropriate” developmental milestones for a two year old. That’s what we’re seeing now.
I’m trying so hard to focus on how wonderful that is, and not that we’re still working on many of those milestones with Howie. Our almost five year old. They are almost evenly matched now in the social development area. That’s still hard to face. Because it won’t be long before Lewis moves ahead of Howie in many areas. And then where will we be?
Mom! Mom! Get coat and go Kyle’s house!
This was yesterday. Lewis grabbed his coat and handed it to me, asking to go to his friend’s house. I was bursting with pride. How could I say no? He and I now have conversations, share cups of “hot toffee (coffee)”, read books and sing along to Glee together. The articulation isn’t quite there yet, so I’m still going to have early intervention back when he’s 30 months old, just to make sure he’s on track for his age. Just because I can understand him doesn’t mean the rest of the world can.
Right now, though, I’ll take it. It was so different from where we were a year ago with him. That’s why I canceled the appointment.
Last month, I wrote a post called Mother’s Intuition about learning to trust your gut when something’s wrong with your child. I’m using my mother’s intuition again. This time, however, it’s to say that everything is going to be okay.
I may be wrong. But my eyes are wide open and I will be looking for any and every sign along the way. And if I see something that makes me nervous, I know I’ll have the strength to trust my gut and make the call once again.
“I can see clearly now, the rain is gone,
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.” – I Can See Clearly Now by Johnny Nash
December 15, 2010
The paperwork has been sitting on my desk for three weeks now. I can’t do it.
All those forms that I need to complete if I want to get Lewis evaluated by the team at the Center for Children with Special Needs…they are still blank. I can’t fill them out.
I started to – I really did. When we got home from the appointment with Howie’s developmental pediatrician (remember her? she called me “Super Mom“?), I sat down at my desk with the stack of forms she gave me. It was the quickest way to get in to see the speech/language pathologist, she told me, since we were still concerned about his speech delay. And it couldn’t hurt to have a full evaluation, could it?
So there I sat that afternoon, pen in hand, ready to answer all those questions again, just like I did a year ago for Howie.
But then my eyes glanced down to the bottom of the page. “Please include a picture of your child here.”
I stopped. I put the pen down. And blinking back tears, I walked away.
That was three weeks ago. Right now, those forms are staring at me as I type (ok, they are actually under a pile of blue paper snowflakes, but they can still see me and I can see them…)
I can’t fill them out because I don’t see it with Lewis.
I’m going to try to explain what it is.
Here’s what I don’t see: I don’t see the long, protracted meltdowns that seem to go on forever. I don’t see the impulsive behaviors and the inability to control them. I don’t see the feeding issues, the sleep issues, or the motor planning issues. I don’t see a child uncomfortable in his own skin. I don’t see a child desperately trying to interpret the world around him.
Here’s what I do see: I see empathy. I see pretend play. I see a child who can feed himself, undress himself, and sleep through the night unassisted. I see the ability to hold a crayon and do a puzzle and transition from one activity to the next without a tantrum.
It was the complete reverse with Howie. All the things I see with Lewis, we didn’t see with Howie. And all the things we worried about with Howie, we don’t with Lewis.
That’s the it, I guess. I don’t see the autism.
And that’s why I couldn’t put his face on that form. Because I’m not sure it belongs there.
This is not to say that I’m not seeing things that worry me. I still see a child who understands everything but still has a very hard time expressing himself and that gap concerns me. Lewis is very shy and won’t talk at all to anyone he doesn’t know.
There are some sensory issues too – he has a fit if his socks aren’t just right and would be happiest staying in his pajamas or not wearing any clothes at all. This sensory avoidance stuff is very familiar, though. Throw in a hatred of turtlenecks and a fear of touching cotton balls and this kid is…me.
So long story short, I don’t know what to do.
I do think he needs to see a speech therapist again for another evaluation. We’ve come a long way but I don’t know where we really are in the grand scheme of all-things-speech. If I fill out those forms for the developmental evaluation, we could see someone quickly since this particular clinic takes the youngest kids first. But I can’t get past the fact that in my heart I feel like we’d be wasting all the other doctors’ time – that we would just be going there to get a faster speech eval. I can’t stand the idea that we might take up an appointment time that we don’t really need. We could use up a spot that could have gone to some other family – one desperately seeking answers and help. A family like just like ours, only one year ago.
But what if I’m completely wrong? What if I’m not seeing it because I don’t want to see it again?
Would I be so quick to give up my spot on the appointment list if this was my first child and not my third?
Sigh. Parental guilt. Never ending.
I do know one thing. The speech pathologist from Early Intervention will come back in February to test Lewis when he’s 2 1/2 years old. She promised she would. I’ve already called her and left a message to set up an appointment.
And for now, I think I’m going to stop there.
I’m trusting my gut on this one. If I’m wrong…if I’ve missed something…
I’m keeping all that paperwork on my desk. Just as a reminder that it’s there, waiting for us, if we need it.
“Sometimes I think I know too much
’bout what goes on in the real world and such
Half of me is certain, the other isn’t sure
One half has the symptom, the other has the cure…
It’s a fine line, a very fine line
It’s a fine line, a very fine line” – Split Decision by Steve Winwood
September 23, 2010
So first of all, a big thank you.
I wrote one line last week about my youngest having his second early intervention appointment. One line. And I got the most amazing, most overwhelming support from my friends – both in person and in cyberspace.
I got the phone calls I expected that day, the ones from my mom and from my husband. But what I didn’t expect were the e-mails and comments and tweets (yes, I said tweets…sigh) from my friends here in town and across the globe. I can’t express how much that meant to me. It was so different from when I went through it with Howie and I knew only one person who would understand. To have so many others check in with me…I’m speechless. Thank you.
So, speaking of speechless…
It’s taken me a week to really be able to process our visit with the speech therapist last week. It was the same woman who evaluated Lewis in May, so she was very familiar with our situation. We were able to skip over most of the Michigan Early Intervention Developmental Profile and go right to the speech/language portion. She went through the test, trying to get him to use his words to ask for the puzzle pieces, the blocks, the animals…and got nothing. She tried to get him to repeat her words so he’d start talking. She tested him a bit, forcing him to ask for something before giving it to him. Nothing.
So since he wouldn’t talk, the therapist and I did instead. She asked me how many words I thought he had (about 20). She asked me how many of those words someone else could understand (about 10). And she asked me how many of those words that someone else could understand were also spontaneous.
Meaning how many did he say on his own without prompting, without repeating.
About five. Sigh.
The therapist wrote down a bunch of notes and asked Lewis questions. He could follow two or three step directions but wouldn’t say anything to her. I figured I needed to chime in here. He has words, I told her. I said I felt like I was walking a fine line telling her things, but I wanted to be honest. I want him to get help if he needs it, but I was afraid that by telling her the things he could do, it might change his score, leaving him ineligible for services. But I needed to give her the whole picture. It wasn’t fair to Lewis, to the therapist, or to the system if I didn’t.
So I told her everything. I told her he could count to 12, but wasn’t sure if anyone else could understand him. She asked to hear that, and as she listened, she shook her head. “I probably would have known he was saying ‘two’, but only because I knew the context”. I told her he knew all the letters of the alphabet, and tried to sing along with songs but no words came out. I told her that even though I knew he could say “Mama”, he never actually called me that. I told her that I know he understands everything, but he’s starting to get frustrated because he can’t get us to figure out what he wants.
The therapist told me she appreciated my honesty and understood exactly what I was saying. The counting and the letters, while great, isn’t really “speech” in her opinion. It’s just rote sounds back. She’s looking for labels of nouns, verbs to get his wants and needs across, and expressive language. She sat there and scored the speech portion of the Michigan while Lewis had a snack. Then she scored it again. And again.
She looked up at me and her face said it all. Yes, his speech was delayed. But not delayed enough for services.
Same old story for us. Just like our evaluation in May, and just like almost all of Howie’s evaluations, we’re smack dab in the middle of the “gray area”.
I could tell the therapist felt terrible. She told me that she knows he needs help and would really benefit from services. She’s worried about the gap between his expressive and receptive language, and is concerned that he’ll start to get frustrated and we’ll see behavioral problems creep out. She could pick him up under “clinical judgment” for six months, but just like she told me last time, she’s worried that we’d lose time when he really needed it – the 2 1/2 yrs old to 3 years old time frame, where the speech demands are so much higher. She recommended waiting again until January, doing another eval, and then she could pick him up from February to August, right before he starts preschool.
In addition, she gave me some new tips for getting Lewis to start talking. She told me to “sabotage” his day a bit when it was just the two of us home, keeping things from him until he attempts the word. I should concentrate on getting Lewis to say the last sound of the word, because he would use the same “b” sound for “bus” and “ball”. She recommended that I focus on just saying one word, not a two word combination. At that point, I had been trying to get him to say “more juice”, but in her opinion getting him to say just “juice” was the most important part.
(on a side soapbox note, the therapist also told me that if we had qualified, the fees would have been significantly higher than we had paid in the past. Because of budget cuts, the department of public health was forced to either raise fees or increase eligibility requirements even more – by a 50% delay. That meant that two year old would have to be speaking at a one year old level in order to qualify for help, thereby missing a whole group of kiddos who need help. Of course, we all know that it means that when those kids get to school, their delays would have been SO significant that the department of education would have been footing the bill…same pot of money, just different department. Just dumb. ok, off the soapbox)
So, long story even longer…
This past week we’ve been trying really hard to implement her suggestions. I wouldn’t let him down from his high chair until he said “done” instead of “da”. If he wanted a banana, he had to say it and not “na na”. And if he wanted out of his crib, he had to tell me “hi, Mama”.
It’s working. He says “done” – the whole word – when he’s finished eating. He’s saying “ba nana” (with the space). And while he’s still not calling for me with “mama”, he will repeat “hi mama” perfectly when I say it first.
Great, right? So why do I feel so guilty?
In one week of intensive work on my part, we’re getting somewhere. It’s not like he caught up in a week, or will even catch up in a month, but we made progress. Because I was giving him my attention. You know, what a mother should do. A mother who is able to focus on her kid. A mother who isn’t completely exhausted with…everything else. I know it’s pointless to play the “what if” game, but in this case I can’t help it.
Now it’s time for us both to play catch up.
“I may know the word
But not say it
I may love the fruit
But not taste it
I may know the way
To comfort & to soothe
A worried face
But fold my hands
Indifferent” – I May Know The Word by Natalie Merchant
July 27, 2010
This was going to be a post today about the power of words. About how important it is to choose our words and tone carefully when we speak to each other because you never know what is going on behind that other person’s closed doors. About we should use our words to lift each other up, and not to knock each other down.
But life got in the way today.
Today I finally took my head out of the sand and brought my youngest in to our doctor for a referral for a hearing test.
I’ve known for a while that his speech was delayed. We’ve all known. And thanks to some gentle prodding from my support group friends, I called our doctor to get his ears looked at. At the visit, our pediatrician listened to me talk about how early intervention didn’t pick him up for services because he wasn’t delayed enough at 19 months. She listened to me as I told her that he’s trying to communicate, but just can’t make the sounds, that nothing has progressed beyond the most basic words and every other attempt at new words sounds like he’s under water. She listened to me as I shared my frustration because I just didn’t know what to do to help him along.
Then came the questions to me: Did I remember if he was delayed in his babbling as an infant? Does he seem to be getting frustrated because he can’t communicate with us? Can he identify different sounds, directions, different people’s voices? She’s asking me these questions through his blood curdling screams as she’s cleaning out the giant balls of wax out of his ears.
The answer given by this guilt-ridden mother of three? I have no idea.
And as that guilt swirls around in my head, I hear words like “immature speech” and “possible ear fluid” and “oral-motor function”. Phrases like “The Learning Center for the Deaf” and “playing catch up”. Reminders like “reduce that pacifier use as much as possible”.
After all the ear flushing and scraping is done, and after all the screaming has subsided thanks to a Curious George sticker, we make our way home with referral in hand. And I think we know he can hear. He understands EVERYTHING. He can get his shoes and bring them to me when he hears it’s time to go in the car. He can hear a plane going by overhead. He can dance along to “Bad Romance” and hand the remote to me when it’s over. He can mimic the Elmo’s World music. He just can’t say shoes, plane, Lady Gaga or Elmo.
And of course, I wonder if it’s something I’ve done. Was it too much TV? Not enough reading? Too much of everything else going on? Did his brother’s autism pull me away from him too many times that I couldn’t help him learn his words earlier? And as a family, can we really go through this again? It’s not about finding the physical strength to go through the potential therapies, doctor’s visits and all the work. It’s about finding the emotional time and energy to make it all happen.
I have to remember it could be so much harder. He is a happy, healthy, loving little boy who is full of energy. He has a laugh that is infectious and a smile that can light up your day. He doesn’t have delays in any other area and we don’t see the other signs like we did with his brother. S0 I have to have some hope. Hope that it’s just a speech delay and nothing more. Hope that it’s something that a few months of therapy will correct. Hope that someday I”ll hear him yell “Mama” because he’s looking for me.
This post was supposed to be about the power of words. Instead, it’s about the absence of them. In many ways, that is just as powerful.
“Shout, shout, let it all out, these are the things I can do without
Come on, I’m talking to you, come on
Shout, shout, let it all out, these are the things I can do without” - Shout by Tears for Fears