Preparing for an Individual Family Service Plan (IFSP) meeting

Thursday morning I meet with our Early Intervention service coordinator and the speech pathologist that conducted Ava’s evaluation in order to write our Individual Family Service Plan (IFSP). Every child younger than three who qualifies for Early Intervention will have one of these plans. It’s mandated by the Individuals with Disabilities Education Act.

The meeting is important. This is where her goals will be set and where her services will be determined. As a speech pathologist and a parent who has recently done a lot of research on Childhood Apraxia of Speech I know that intensive one-on-one therapy is essential. The one-on-one part will not be difficult. In Missouri, at least, your early intervention therapist comes to your home to do therapy with your child. As long as I can find a way to keep her brother occupied elsewhere, the therapy will be one-on-one. It’s the intensive part that might be difficult.

I could be wrong, but I believe that the default amount and frequency of therapy provided is a one hour session once a week. I’m going to request that that one hour per week be broken up into two 30 minute sessions. I think it is more appropriate for a child of her age. Speech therapy for apraxia is supposed to be based on motor learning principles. That means (among other things) trying for as many productions as possible. You want to get the child to produce word after word after word. That is exhausting for a little one. She can’t do that for more than about half an hour. That means that the other half hour would be wasted in terms of directly addressing her apraxia of speech. She needs at least half an hour of therapy twice a week from early intervention in an ideal world. I’d love to increase the half hour twice a week to 45 minutes twice a week. The extra 15 minutes would focus on helping Ava and the whole family learn more signs.

I’ve been on the other side of the table many times. I worked in a public school district and participated as the speech pathologist in many IEP meetings. Usually everyone is interested in what is best for the child. The meeting does not have to be adversarial in manner. It should be a positive meeting where everyone is focused in what is best for the child and family. I am going to assume that my meeting will be like that.

I am also going to be prepared. First I will actually read the Missouri First Steps Parental Rights document. Second I will find and print as many sources as possible to document the need for intensive, frequent treatment. I will make multiple copies of my research and highlight the key phrases. In this way I can show the team members research based reasons for my request.

Although I didn't use either of these documents in their entirety, I copied parts of both of these:

Cherab website - One on One Therapy: A Review of Apraxia Remediation

ASHA’s Technical Report on Childhood Apraxia of Speech

The key quote from the Cherub website's article (I've also seen the same quote on the apraxia-kids website)is as follows:

"Campbell also compared outcomes in relation to the amount of treatment provided for phonologically-disordered children with children with apraxia. The parents of 49 children with moderate to severe phonologic deficits receiving individual speech therapy were administered the same survey. For these children, an average of 29 individual treatment sessions (45 minutes in length) were required for parents to report that about three-fourths of their child’s speech could be understood by an unfamiliar listener. To achieve the same intelligibility level among the parents of children with apraxia, an average of 151 individual treatment sessions were required. "In other words, the children with apraxia of speech required 81% more individual treatment sessions that the children with severe phonological disorders in order to achieve a similar functional outcome" (Campbell, 1999)."

The key quotes from the American Speech Language Hearing Association (ASHA) Technical Report on Childhood Apraxia of Speech are as follows:

"There is emerging research support for the need to provide three to five individual sessions per week for children with apraxia as compared to the traditional, less intensive, one to two sessions per week (Hall et al., 1993; Skinder-Meredith, 2001; Strand & Skinder, 1999)"

and

"In view of the Committee's information indicating that children are being enrolled for treatment of CAS at increasingly younger ages, careful consideration should be given to the length of the therapy session. If repetitive practice of speech-motor patterns is targeted in a therapy session, many children in the younger age ranges can remain engaged for only a maximum of 30 minutes per session."


I’ll let you know how the meeting goes.

Timeline

Over Thanksgiving I had a conversation with my mother about how Michael had started to catch up by the time he was Ava’s age. And as a contrast, Ava had plateaued. In fact, she was choosing to use more and more gestures rather than trying to use words to communicate. After that holiday it was going to be time to start making phone calls.

The week before Christmas Ava saw a private speech therapist for the first time and she agreed that Ava looked pretty apraxic. This was when the depression kicked in. I couldn’t hope that I was just an overly concerned speech pathologist mother any more. I spent a week crying most of the time that I wasn’t directly interacting with my kids. Then holiday preparations kicked in and I was too busy to obsess over it. Next, we visited family in another state for 4 days. If you’ve ever traveled 12 hours in a car with a 1 and 3 year old you’ll know that it’s pretty much all absorbing.

The week we got back was Ava’s early intervention evaluation. She qualified which was great, but also depressing. So I spent another week or so in non-productive mode. Then I started blogging, which helped. And researching, which also helped. Now I’m in full-on productive mode. Two modes actually. I’m being productive as a parent of a child newly diagnosed with a speech disorder. I’m also being productive as a speech-pathologist who has acquired a reason to become knowledgeable about a specific disorder in her field.

Emotional Journey

By nature I have a pretty cheerful, positive personality. I use that energy to spend positive days at home with my children and in my dynamic with my husband where my more bubbly personality tends to raise the energy in the household in a positive way. When Ava qualified for early intervention services with a likely diagnosis of apraxia it hit me hard. I was depressed and on the verge of tears pretty much every waking moment. It made it difficult to be a good parent to my children and changed the whole tone of my interactions with my husband. Here I wondered how long it would last before I’d be able to think past the fear and sadness of the diagnosis and become a little more functional and a little more myself.

Well, it turns out that for me the worst of it lasted about 2-3 weeks. Blogging helped actually. Normally I’m a hide my wounds and lick them in private kinda girl, but talking about everything both online and off has helped a lot. I think the holidays helped too simply because I was too busy to obsess.

I’m also consciously avoiding lines of thought that aren’t productive. Any train of thought that goes something like, “What will school be like for her? or How will she make friends if she can’t talk to them? or I think she’d be closer to her brother if only they could talk to each other. or Will she have the language and reading problems that often accompany apraxia when she gets older?” gets cut off immediately. I don’t know yet how she’ll respond to therapy or how fast she’ll progress. It just doesn’t make sense to worry about tomorrow’s possible problems when there are enough things to deal with today. I can handle today’s problems. I can work out solutions. I can’t do anything about fears for things that –might- happen in the future.

So now I’m in a flurry of activity and I feel pretty good about it. It makes me feel better to have a list of things I want to accomplish and to actually be crossing some of those things off. In my next few posts I’ll talk about some of the things we’re doing and setting up right now.

Genes, Part 2

So, Ava arrived about 15 and a half months after her brother. My pregnancy with her was also completely normal and full term. Her birth was also natural and uncomplicated. My mother, who was in the delivery room, said that she felt that Ava spent a little more time than normal before getting her shoulders out. I pay attention to this only because my mom was a practicing ob/gyn nurse 30 years or so ago. However, when I mentioned that to my ob later, he said that he thought everything was fine. She was a healthy 8 lb, 12 oz. baby. She also had severe newborn jaundice which was treated well and cleared up in under a week. She wasn’t an easy baby, but she was easier than her brother. She had reflux for which she was medicated for the first year of her life or so, but that’s the only medical history of note. She was more interactive. She made some vocalizations. I don’t remember what exactly, but I remember that it was “more than Michael did at her age, and look how he turned out – she’s fine.” She didn’t have any of the unusual staring at lights or fascination with screws type behaviors. Her eye contact and turn taking were more appropriate as well. I was just so relieved to not have a repeat of Michael’s first 15 months that I didn’t really take her red flags seriously enough. Because in retrospect, they were there. If you remove the lens of “this is better than Michael, so it’s all going to be ok”, there was plenty to be concerned about on her own merit.

Yes, she had more vocalizations than Michael, but they weren’t enough, at the right age, or of the right types. She had a few vowels, but almost no consonants. No sense of vocal play. No reduplicated syllables. She didn’t imitate at all. Even though I’m a speech-pathologist, I’ve never raised a baby with typical speech development. Therefore, I didn’t really appreciate how behind her babbling was. She had a few “words” at her 18 month pediatrician visit. We thought she had an approximation for Michael and one for kitty. I don’t remember the rest. They pretty much all disappeared. By the time I called First Steps at 21 months of age the only words she used regularly were “yeah”, “da” (that), and “mo” (more). We’d also occasionally hear “uh oh” and “ha” (hot).

At the 18 month pediatrician visit, she seemed to be trying, and I was still entrenched in the she’s almost where Michael was at this age and he turned out fine mentality. Three months later she had lost what little she had and the lack of progress at a time when she should have been starting to talk more and more triggered enough concern that I couldn’t keep my head in the sand any more. And I started to make phone calls.

If it hadn’t been for our experience with Michael, I’m pretty sure I would have had Ava evaluated months earlier. So be it. We all do the best we can.

Genes

Well, my husband is my perfect partner. That sounds terribly sappy, but it’s true all the same. I would not trade him for anything. I think we combine in a way that makes amazing, sweet, smart, kind children. However, those children do not have typical language development.

Ava has been the main topic here because we’re dealing with her diagnosis of apraxia, but that story actually begins with Michael. My pregnancy with Michael was completely normal and full term. Natural, uncomplicated birth. Healthy 8 lb, 6 oz. baby boy. He did have rather severe newborn jaundice which wasn’t well treated, but that’s a story for another time. He screamed for months. I kid you not. Somewhere 6 months in or so I remember asking my husband if he would ever be happy and awake at the same time. I was worried even then. He didn’t make eye contact. He was more interested in the lights or ceiling fan than in faces. We didn’t get the smiles or coos. There was very little interaction. Almost no babbling. He didn’t even make vowel sounds until 8 months of age. When he’d play with toys he was more interested in the screws on the bottom of the toy than in actually playing with it. He wasn’t interested in turn taking games like pat-a-cake. Red flags were everywhere and a speech-pathologist I saw them. But I was a new mom and insecure, and no one else seemed to be listening.

He had no words at his one year pediatrician visit. Our pediatrician told me if he didn’t have three words at his 15 month visit we’d begin testing. He had three- barely - at that visit and they all had come in that week. (Ava was born, incidentally only 2 weeks after that 15 month pediatrician visit). When he did begin talking, his first sounds were very atypical. He had /k/ and /g/ and enjoyed making clicking sounds with his mouth. I was very concerned. And about more than just his speech.

And then it just clicked. The words came more and more quickly. Ten words, then 50, then more than we could count. Two to three word combinations came between 20-22 months of age and he was using 3-5 word sentences at two. At three he’s pretty much completely intelligible to strangers and using long sentences with complex structures and vocabulary.

It was our own little miracle. A breathtaking relief. And the experience completely colored the way we looked at Ava’s development.

Jealousy

I didn’t start reading blogs until I had children. Then I found several that I enjoy. I enjoy them because it’s nice to know that I’m not alone. And they’re often funny and well written. Now I’m experiencing something new – jealousy. A mother in a blog I follow just had her youngest turn two. Among many other things she mentioned that he’s talking in two to three word sentences. I want that for Ava too. More than I can say. I don’t like feeling jealous. It’s not an emotion I identify with myself. I think it’s something I’m going to have to make peace with though. It’s part of my future.

Symbiosis

Ava and I are like two halves of a communication whole. When it comes to common routine things I almost always know what she wants and what she’s trying to communicate. I know that she wants a snack when she gets up from nap. Usually we go through a question and answer routine. Do you want a banana…some yogurt…some milk…etc? She’s remarkably eloquent with intonation and vowels. I wonder if my ability to read her and to facilitate her communication is a mixed blessing. I’m pretty sure she’s less frustrated than other kids with her level of verbal skills because I’m so good at helping her. However, she’s reluctant to spend time with anyone but me. Also, she may not try as hard to verbalize because she doesn’t have to.

Recently we’ve begun teaching her sign. We also put up a communication board with the most common things she wants from the kitchen on the wall in the kitchen. I’m expecting her to actually ask for what she wants in one of those two ways (usually accompanied by a verbalization) instead of just guessing until I get it right. I think she likes it. She’s excited about being able to ask for what she wants using the communication board. She’s spontaneously using the signs for milk, please, and help. It’s really a lot of progress for only about a week of using these interventions.

There’s just so much more locked in that little head. She’s almost two. She should have at least 50 words and be using 2-3 word phrases. I don’t know that many signs, and our communication board only has 8 pictures. You can just tell that she’s wanting to communicate more complex thoughts and just doesn’t have the tools to do it. I wish I were fluent in sign so that I could open up a whole different method of communication for her. I want to hear what she has to say. I don’t care right now how she says it.

Schedules

The rhythms of life as a stay at home parent have gone through such distinct stages. There’s the sleep deprivation / breastfeeding stage where night and day blend together as do the days of the week. All time is the same. It drove me crazy a bit. And with my two babies only 15 months apart, in some ways I felt like I spent two straight years in that stage.

Next there was the stage of two toddlers. This was actually quite nice. I liked it here. The days and nights become distinct again. Days start to have regularly scheduled appointments like nursery school two mornings a week. Regular playdates are set. Conversations begin to return with adults aside from your husband and on topics other than the feeding, sleeping, changing, and development of babies.

And now there’s something new. Parent of a child with special needs. I’m barely starting this and I’m realizing that appointment are beginning to be difficult to keep track of. There’s school two mornings a week. Two half hour therapy sessions a week with the private therapist. The IFSP meeting coming up. The hearing test coming up. Then we’ll be scheduling the first steps therapy session(s). That will probably be once a week for an hour which is their typical schedule. I’m going to try to advocate for half hour sessions twice a week though. It’s better for kids with apraxia and I have the citations to prove it. I doubt any speech-path knowledgeable about apraxia would argue the point, but sometimes practicality wins. They serve you in your home. If you factor in driving time, you are asking them to fit in extra time into a busy schedule serving other families too. It can’t hurt to ask though, right? So that will bring us up to three or four therapy appointments a week. Plus two mornings of preschool. We also have two regular playdates. I hate to let those go, but I begin to wonder where we’ll fit it all in. The kids still nap in the afternoon. And don’t they get to just hang out at home any more? Balance… does it even matter? Or is the therapy more important?

Family.

Well, yesterday’s post must have been cathartic somehow. I managed to do some web browsing last night on the topic that was fairly productive. There’s a lot of good information at the www.apraxia-kids.org website for both parents and therapists and I spent several hours browsing both sections. It’s a start I suppose. I stayed up way too late and then had trouble falling asleep so I’m glad this morning is a preschool morning for the kids.

I was feeling pretty good about having been productive and managing to avoid the emotional black hole of the mental pathway that begins with the desperate wail….. ”But what about her future!!!” Then my dad called. My parents are wonderful. They live five minutes away and have been taking Michael for one night every weekend since he was about two months old. When Ava was born they started taking turns. One weekend they’ll take Michael and the next they’ll take Ava. My children have the blessing of being extremely close with their grandparents and we have the blessing of getting regular one-on-one time with the kids. Usually communication in my family goes along the lines of my mom as mediator. I’ll talk to my mom and she’ll talk to my dad. Or dad’ll talk to mom and then she’ll talk to me. My dad and I have a great relationship, but I just talk to my mom more often.

Well, yesterday afternoon I called my mom and gave her the good (she qualifies) and bad (she tests like a 6 month old) news. Mom was upset, but supportive. I was upset, but avoided a complete meltdown. Additional details aren’t really necessary. To be honest, I didn’t even really think about whether she’d discuss it with dad overnight.

So his call this morning was a complete surprise. He just called to personally say that we have his complete support. That Ava’s a wonderful girl with a family that loves her and we’ll all travel this path together. The call was relatively brief, completely unexpected, and touching. And now I’m a complete mess again. This experience is such a roller coaster.

This can't be happening to her.

My daughter isn’t talking. Well, she isn’t talking much. Warning bells have been ringing in the back of my head for months, but I ignored them because her older brother was a late talker too and now is significantly above average at just a little over three. Whenever I would express my concerns to other people, they’d just say that she was fine. She obviously understands everything said around her and her brother turned out fine, didn’t he? So I waited, and waited. I just wanted it to “kick in” so I wouldn’t have to worry any more.

The funny thing is that I’m a speech-language pathologist. I know how normal speech development works. I knew this was different. But I still procrastinated convincing myself that I could wait because everything turned out fine with Michael.

Finally I just couldn’t wait any more. I started making phone calls about a month ago. I called her pediatrician. She told me to start with a hearing evaluation. It’s scheduled for the end of January. Two months to confirm what I’m pretty sure I know – she can hear. Found out that our insurance doesn’t cover speech therapy for children unless they had it and lost it (like with a head injury). Started her with a private therapist who agrees that things aren’t right. Twice a week for 30 minutes. Seems like so little time to try to fix so much.

Called Missouri’s First Steps program. This is the program in Missouri that serves the birth to three population. They scheduled an evaluation, but doubted she’d qualify. In order to qualify, she’d have to score as low as a child half her age – 11 months on a language subtest that combines how she understands language as well as how she speaks language. Well, she understands just fine which was bound to bring the score up. I scheduled the evaluation anyway. At the very least she’d be evaluated by someone with a lot of experience with little ones who could confirm my concerns even if she didn’t qualify. I called the local university’s speech clinic and investigated the possibility of her being seen there. Anyway, I made a lot of phone calls and set up a lot of appointments. Then it was the holiday season and things were so busy I escaped for a while.

What I can’t seem to do is think about the situation on an emotional level. Every time I try to think about the fact that my baby has a severe speech delay I just completely break down. Which is completely useless and unproductive. I’m a speech pathologist. Who better to try to help a child with a speech delay? And I just can’t seem to do it yet. I need a clear head to research and plan goals. I need a clear head to sit down with her and work with her like a professional rather than an extremely upset mom. And I just can’t. And I feel incredibly guilty about it. Ever since making the phone calls I’ve been trying to just tune out. Try not to think about it. At least it keeps me functional as a parent who’s the primary caretaker of two small children.

Today was her first steps evaluation. Good news is that in every single area except expressive language (speech) she’s above average. Tests at 2 years of age or older. Bad news is that she scores like a 6 month old on the language portion of the test. 6 months old!! That’s nearly a two year gap between her ability to talk to people and everything else. She’s not even two years old yet.

And unofficially, it looks a lot like childhood apraxia of speech. Which I knew. I’m a speech pathologist, of course I knew. But it sucks to have someone else agree. No one would officially diagnose her at this age. But she’s normal everywhere else. No sensory issues. No social issues. So few consonants (only two). So few vowels. No imitation. No vocal play. I suppose I should just be grateful she’s going to qualify for services. And I am. Really, I am.

But I’m mostly just incredibly sad. Not for me. Just for her. I’m terrified of a future in which my bright, cheerful, independent, sweet girl cannot express her thoughts and feelings to the people most important to her. Of how peers and school will treat a little one who continues to be silent when all around her are talking. She’s so smart and no one will know. How will she continue to keep up when she doesn’t get to participate in conversation with her family? She can’t ask questions about things that interest her. She can’t comment on things she thinks are funny. She can’t ask for help. She can’t tell us why she’s sad.

And I have to help her. I have to. It’s my job. I’m her mommy. And I can’t yet because my emotions won’t cooperate. When does it get better? When does this stupid diagnosis stop being the only thing I think about all day? It’s there when I get up. It’s there when I’m trying to go to sleep. It sneaks up on me during every quiet moment of the day.

I’d love to come up with some succinct summary of this mess, but I simply don’t have anything else to say right now.