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.
A Speech Pathologist Mother and Her Daughter Diagnosed with Childhood Apraxia of Speech
Sunday, January 23, 2011
Saturday, January 22, 2011
Genes, Part 3
So, there you go. Same two parents. Two kids. Both children are smart, funny, beautiful, kind, healthy, and every other positive thing every parent believes about their own children. However, neither child has typical language development. And one has a pretty serious speech disorder that will probably change the rest of her life.
I tread lightly here because I firmly believe that what is right and obvious for me and my family is not necessarily right for everyone. If you make different choices I applaud you for them and pass no judgment on them simply because they are different from mine.
Having said that…. Having a child with special needs is a situation I need to devote a significant amount of resources to. Those resources include emotional ones, financial ones, and time. I always felt that two children were enough for our family but I’ll admit that I was sad to think I’d never be pregnant or nurse an infant again. I might have considered more children at some point. Now I just can’t. All my resources need to go to the two children I already have. And that would be the case even if I could get some guarantee that my next child would have typical development. And doesn’t that seem unlikely.
And so I find myself in a rather common human condition. I didn’t really want more children. Not really. But I certainly didn’t want that choice to be taken away from me. And even if it is irrational, I feel like the set of circumstances I find myself in has taken that choice away from me. And I resent it. It’s irrational, but still, that’s the way I feel.
I tread lightly here because I firmly believe that what is right and obvious for me and my family is not necessarily right for everyone. If you make different choices I applaud you for them and pass no judgment on them simply because they are different from mine.
Having said that…. Having a child with special needs is a situation I need to devote a significant amount of resources to. Those resources include emotional ones, financial ones, and time. I always felt that two children were enough for our family but I’ll admit that I was sad to think I’d never be pregnant or nurse an infant again. I might have considered more children at some point. Now I just can’t. All my resources need to go to the two children I already have. And that would be the case even if I could get some guarantee that my next child would have typical development. And doesn’t that seem unlikely.
And so I find myself in a rather common human condition. I didn’t really want more children. Not really. But I certainly didn’t want that choice to be taken away from me. And even if it is irrational, I feel like the set of circumstances I find myself in has taken that choice away from me. And I resent it. It’s irrational, but still, that’s the way I feel.
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Friday, January 21, 2011
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.
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.
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Thursday, January 20, 2011
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.
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.
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Wednesday, January 19, 2011
Expanding Horizons
My son is a little over three years old. I am watching him explore his world and his place in it. It’s extraordinary to watch his world expand little by little and see him gain confidence. We waited a long time to switch him from his crib to a toddler bed simply because he was so happy in his crib. He would play happily for an hour before falling asleep and another hour after he woke up before he would call for someone to get him. He slept well. We didn’t see any need to change that prematurely. However, as he approached his third birthday we decided to make the switch and he was excited about it. It made me a little sad though that I would go up to get him an hour or so after he woke up and find him still in the bed. It didn’t even occur to him that he could crawl out on his own.
Then one day it just happened. He left the crib. And chaos ensued. He’d still happily play in his room…but for two or three hours. And never fall asleep. Overnight he went from taking two and a half hour naps to no naps at all. I loved that he was enjoying a new level of independence. I was still essentially getting a break in the afternoon since he happily spent all of that time in his room, but he still needed the sleep. I finally found a solution. I let him play for anywhere from 30 minutes to an hour and then I go sit in a chair in his room. That effectively pins him to his bed and he falls asleep within 10 minutes. And sleeps for at least 2 hours.
Concurrently with all of this we’ve been potty training. He’s been day trained for quite some time, but he began showing interest in taking himself to the bathroom rather than going in his nap/bedtime diaper if he was awake. So we told him that if he needs to go to the bathroom he can leave his room and do that quietly and return to bed. A whole new level of chaos has ensued. Minutes after leaving the room doors begin to slam and running feet can be heard. Last night we put him to bed at 8pm and he was still awake when I was going to bed at 10:30. And that time is now spent entering and leaving his room. Another favorite is peering down at us from the upstairs balcony in a manner he thinks is quiet. I have no idea what he thinks he is doing, but he also goes into and out of his closet slamming the sliding doors open and shut each time. Feet thunder back and forth over our heads.
I love the independence and exploration. I love that his world had grown from the confines of his crib, to toddler bed, to his room, to the areas outside his room. However, I miss the beautiful sleep. And I’m pretty sure he does too. I’ll give him a week or so to see if the exploration grows old on its own, but if not I guess I’ll have to do the sitting with him trick at night time too.
Then one day it just happened. He left the crib. And chaos ensued. He’d still happily play in his room…but for two or three hours. And never fall asleep. Overnight he went from taking two and a half hour naps to no naps at all. I loved that he was enjoying a new level of independence. I was still essentially getting a break in the afternoon since he happily spent all of that time in his room, but he still needed the sleep. I finally found a solution. I let him play for anywhere from 30 minutes to an hour and then I go sit in a chair in his room. That effectively pins him to his bed and he falls asleep within 10 minutes. And sleeps for at least 2 hours.
Concurrently with all of this we’ve been potty training. He’s been day trained for quite some time, but he began showing interest in taking himself to the bathroom rather than going in his nap/bedtime diaper if he was awake. So we told him that if he needs to go to the bathroom he can leave his room and do that quietly and return to bed. A whole new level of chaos has ensued. Minutes after leaving the room doors begin to slam and running feet can be heard. Last night we put him to bed at 8pm and he was still awake when I was going to bed at 10:30. And that time is now spent entering and leaving his room. Another favorite is peering down at us from the upstairs balcony in a manner he thinks is quiet. I have no idea what he thinks he is doing, but he also goes into and out of his closet slamming the sliding doors open and shut each time. Feet thunder back and forth over our heads.
I love the independence and exploration. I love that his world had grown from the confines of his crib, to toddler bed, to his room, to the areas outside his room. However, I miss the beautiful sleep. And I’m pretty sure he does too. I’ll give him a week or so to see if the exploration grows old on its own, but if not I guess I’ll have to do the sitting with him trick at night time too.
Tuesday, January 18, 2011
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.
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Monday, January 17, 2011
Hula Fail
So my mom got me a weighted, adult-size hula hoop and instructional dvd for Christmas. I had asked for them on a whim. I had never actually used a hula hoop successfully before, but I’d never had an adult-sized one before either. Supposedly the bigger it is, the easier it is.
So, I tried it. I’m terrible at it, but I had fun. I managed about 30 seconds to a minute at a time over 15 minutes or so. The next day I was bruised. Seriously! Bruised. So, there was a three day break while I waited to heal. The next time I tried it I was a little better. I could hoop for say, 45 seconds at a time to maybe 2 minutes at a time. Again, over a 15 – 20 minute time span. The next day – more bruises and another waiting period.
I’d really like to hula hoop for fun and fitness. I find it to be a mood booster. I could use a mood booster. But at the rate of 15 minutes twice a week I don’t see much progress happening. At least I do see a little bit of humor in the situation.
So, I tried it. I’m terrible at it, but I had fun. I managed about 30 seconds to a minute at a time over 15 minutes or so. The next day I was bruised. Seriously! Bruised. So, there was a three day break while I waited to heal. The next time I tried it I was a little better. I could hoop for say, 45 seconds at a time to maybe 2 minutes at a time. Again, over a 15 – 20 minute time span. The next day – more bruises and another waiting period.
I’d really like to hula hoop for fun and fitness. I find it to be a mood booster. I could use a mood booster. But at the rate of 15 minutes twice a week I don’t see much progress happening. At least I do see a little bit of humor in the situation.
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.
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.
Thursday, January 6, 2011
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?
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.
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.
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Wednesday, January 5, 2011
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.
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.
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