Today we saw another SLP, this one through our healthcare provider. The end result was neither good nor bad, so I guess that's a good thing. She didn't ask any of the annoying questions or make lame statements like we've become use to (i.e., he's a boy and they sometimes talk late or are his older brothers talking for him?). At the end of the appointment, I thanked her for that. She laughed and said she had been doing this for a long time and wouldn't ask things like that. She read through Nate's IEP and agreed with the dx of either CAS or a phonological disorder. It was nice to hear that confirmed. Since our healthcare provider will only provide speech services when it's medically warranted, there's probably not much she can do. So we'll be going back in about 3 months to see what progress is being made with his current therapy and maybe something more definitive as far as an official diagnosis. She said that we're doing all the right things. For me, it just doesn't feel like enough because he's not talking yet. I just want everything to be fixed right now. I know I need to be patient with it all and allow for more time. We also talked about how the quality of the therapy is more important than the quantity and hopefully starting in the fall he'll be spending 2 times a week with the school district and another 2 session with the local university. But until then, the focus really needs to be on continuing what he's working on in therapy, at home.
I was able to sit in on another therapy session with the school district earlier this week. He's really working hard on his individual sounds and learning new signs. A friend of mine got me some Signing Time videos, I've been wanting to get a few of these to use with Nate. They are really geared towards toddlers and preschoolers and he enjoys watching them. We're definitely going to have to work on more signs. While we sign we are also working on the sounds, right now it's mostly initial sounds but it's a start. The hardest part of the signing is remembering to use the signs throughout the day. Since he understands everything, it's not natural to sign along with what we're saying to him but I'm sure if we sign more often, that will help him use it more too.
I'm hoping that in the next few weeks we can start video taping some of his sessions to have samples of the progress he's making. Sometimes it's hard to see the changes when you're right in the middle of it all.
Friday, March 26, 2010
Friday, March 19, 2010
Say What?
Just got a call from the developmental pediatrician we saw earlier this week. She's recommending we have Nate assessed for Asperger's Syndrome. Ok, so this has really caught me off guard. There's no way! If you're not familiar with Aspberger's, here's a list of the characteristics:
On another note, today was the first time I've had the chance to sit in on his speech session with the school district's SLP. It was amazing to watch her persistence with him as he can be a bit stubborn. He actually said the word hot only it was more like huh......o........t. But it's a step in the right direction. They worked on color words and the corresponding signs. He said purple.... p.....p. He works so hard. What was really interesting was watching her do oral exercises with him. I asked her about it and she explained what she was doing with this one soft brush-like tool that she uses with him. She moves it slowly around his mouth and then will stop. He is suppose to move his tongue to that spot. It's a natural reflex, like when you're at the dentist and they are moving the mirror around in your mouth, your tongue kind of naturally follows. Only Nate's doesn't do that. He has to really think about where to move his tongue so that it's touching the brush. What he's basically working on is rewiring his brain so that eventually he can move his mouth to make the sounds and words he needs to in order to speak. It's fascinating. We talked about how the developmental pediatrician suggested an MRI but as with many apraxic kids, the scans will come back normal.
Much of the research into how we talk, how thoughts and speech are formed, is still taking place and it's a much more complicated process than we normally think. Since it's so natural for most of us, why would most of us stop to think about it?
Here's some interesting research that just came out last fall:
- Appears to lack empathy
- Does not pick up on social cues
- Unusual facial expressions or postures
- Preoccupied or only a few interests
- Normal language and intellectual development
On another note, today was the first time I've had the chance to sit in on his speech session with the school district's SLP. It was amazing to watch her persistence with him as he can be a bit stubborn. He actually said the word hot only it was more like huh......o........t. But it's a step in the right direction. They worked on color words and the corresponding signs. He said purple.... p.....p. He works so hard. What was really interesting was watching her do oral exercises with him. I asked her about it and she explained what she was doing with this one soft brush-like tool that she uses with him. She moves it slowly around his mouth and then will stop. He is suppose to move his tongue to that spot. It's a natural reflex, like when you're at the dentist and they are moving the mirror around in your mouth, your tongue kind of naturally follows. Only Nate's doesn't do that. He has to really think about where to move his tongue so that it's touching the brush. What he's basically working on is rewiring his brain so that eventually he can move his mouth to make the sounds and words he needs to in order to speak. It's fascinating. We talked about how the developmental pediatrician suggested an MRI but as with many apraxic kids, the scans will come back normal.
Much of the research into how we talk, how thoughts and speech are formed, is still taking place and it's a much more complicated process than we normally think. Since it's so natural for most of us, why would most of us stop to think about it?
Here's some interesting research that just came out last fall:
In just 600 milliseconds, the human brain can think of a word, apply the rules of grammar to it and send it to the mouth to be spoken.
Speed of Thought-to-Speech Article
Amazing.
Speed of Thought-to-Speech Article
Tuesday, March 16, 2010
The Journey (Part 3)
Back in December I had talked to several friends who highly recommended the speech center at the local university, where they train their SLP students. Even the school district SLP was recommending this center. After some investigation, there was more paperwork to be completed, and Nate was put on a list. About a month later, I called to follow-up and he had been selected as one to be assessed. Since this university is looking for a variety of speech issues, Nate was probably a good candidate. In February he was assessed at their center. Around this time I had met another mother (through Facebook) living nearby whose son was currently being seen at the university center and her support and encouragement was very helpful. The assessment went well and at the conclusion of the review, he was recommended for immediate intervention....so what does immediate mean? Immediately in the fall. Since the semester was currently underway, Nate will have to wait until the fall semester begins in September. There is the possibility there will be a small summer program, so I'm hoping we'll get a call for that. Although none of this is free, it's at a reduced cost and nothing in comparison to what other hour-long one-on-one therapy might cost. On the downside, they only see students for 3 semesters (approximately 1 1/2 years). So although this is a wonderful option, I felt like it's a dead too.
So now what? Since no one wants to officially diagnosis the problem....or maybe it's more that no one knows what's going on...I decided to further pursue our health-care provider to see what additional services he might need or possibly qualify for. I know it's better to intervene as soon as possible rather than wait and see. So off to see a different developmental pediatrician, one who has done some work in neurology.
We saw this new developmental pediatrician yesterday and we walked away with no new information. She initially suggested autism and I immediately told her that wasn't the case. After her thorough questioning and examining, she agreed that he is a smart boy just can't talk. No autism or autism spectrum disorder here. One of the most asinine questions we get asked is this (and she did ask)-
As a result of this developmental pediatrician's evaluation, he will be formally seen by an occupational therapist (OT) and maybe sometime down the road undergo an MRI. This is the only way they to determine if there truly are neurological issues. But with full anesthesia I'm not willing to put Nate through that right now. So OT and another SLP evaluation will be what we pursue for now. It will be interesting to see what comes next. Or what lame things I can add to my "asinine things" post.
So now what? Since no one wants to officially diagnosis the problem....or maybe it's more that no one knows what's going on...I decided to further pursue our health-care provider to see what additional services he might need or possibly qualify for. I know it's better to intervene as soon as possible rather than wait and see. So off to see a different developmental pediatrician, one who has done some work in neurology.
We saw this new developmental pediatrician yesterday and we walked away with no new information. She initially suggested autism and I immediately told her that wasn't the case. After her thorough questioning and examining, she agreed that he is a smart boy just can't talk. No autism or autism spectrum disorder here. One of the most asinine questions we get asked is this (and she did ask)-
"He has older brothers, right? Do they talk for him?"
What kind of question is that coming from a well trained physician? What 3 year old goes through life without uttering a single word because their older siblings did all their talking for them? Not even the most favorite word of any toddler? The word "NO!"? Come on. Instead of saying no, Nate screams at the top of his lungs and shakes his head, because he can't say no. I think I'm going to dedicate a post to lame questions we get asked or lame statements that are made. How does one talk for someone? I just don't get it.As a result of this developmental pediatrician's evaluation, he will be formally seen by an occupational therapist (OT) and maybe sometime down the road undergo an MRI. This is the only way they to determine if there truly are neurological issues. But with full anesthesia I'm not willing to put Nate through that right now. So OT and another SLP evaluation will be what we pursue for now. It will be interesting to see what comes next. Or what lame things I can add to my "asinine things" post.
I know what's most important is not the diagnosis so much as the treatment. But sometimes I feel like without the formal diagnosis, Nate might not get the treatment that he needs. So this is all we have to go on for the time being...
He presents with a significant delay in expressive language skills for his age. He demonstrated with a significant speech/articulation disorder with characteristics of both Childhood Apraxia of Speech (CAS) and a Phonological Disorder. Due to his young age and limited vocalizations it is difficult to pinpoint the disorder at this time.
Saturday, March 13, 2010
The Journey So Far (Part 2)
So this past fall we saw a couple of different specialists. One was a pediatric neurologist. After doing what I think was a less than thorough exam of Nate, his conclusion was that there are late talkers and that he'd be fine. The paperwork says speech and language disorder (at least it wasn't delay!). No suggestions for treatment other than to see a developmental pediatrician.
I was pretty apprehensive about seeing the developmental pediatrician, as all the paperwork and information I had received from her office indicated that her specialty was working with ADHD or Autistic children. I definitely knew that Nate was not Autistic but I figured it would be better to rule it out. In the mean time, the OT and SLP at Nate's school continued to see him once or twice a week but I had become more frustrated with their lack of knowledge about CAS. They were sure it was something else. Mental retardation? They never said it but it seemed to be what they were suggesting. It can be so hard to be so sure about something and be told by professionals that you are not right. I truly believed that it was just their lack of knowledge about this disorder more than my being wrong. I had also begun reading the book The Late Talker, What to Do If Your Child Isn't Talking Yet by Dr. Marilyn Agin, which has continued to strengthen my thoughts about what is going on with Nate.
When we saw the Developmental Pediatrician, she appreciated that I had filled out the stack of paperwork. Of course, all this was geared towards kids with ADHD or Autism but I filled it out anyway. In thinking back on the evaluation, I should have insisted that she work with Nate first and ask us questions later because by the time she got into the room and finished questioning my husband and I, Nate was done. He was definitely not going to cooperate. Being that he's not a performer like some kids are, I was praying that he would show the doctor what he could and couldn't do. She asked him to stick out his tongue, which took him a while but he did. She asked him to move it side to side and he couldn't. I had him attempt the word "bubbles" because it was one that he and his preschool's SLP had been working on and he made an attempt, kind of opening and closing his mouth more like a fish. She thought it was good. (Are you kidding me? Good for a 2 1/2 year old??) I should have had him try to say the word banana because he probably would have just smiled like he always does when he knows it's not something he can't do. At the end of this appointment I ended up in tears because her response was, "at least he's learning". I couldn't believe that yet another doctor with years of training and specialization would come up with such a vague answer. Her report said to continue with present plan and return in 6 months for evaluation. Another frustrating dead end.
Meanwhile at Nate's preschool he was continuing to thrive and his amazing teachers really become in tune with him. They understood his mixture of signs, grunts, and expressive faces. The intonation and vocalizations he makes are really amazing for someone who has no words. I am thankful that he makes a lot of sounds and is determined to get his point across when need be.
During the months of December and January I started contacting our local school district (and university-more on that later) to get things rolling for an IEP since he would be turning 3 and the home therapy would be ending. The Late Talker book has so much information and even a chapter on getting the help you need, including a walk-through of the IEP process and all sorts of tips and suggestions. I also read all the information I could find on-line about the IEP process, both at the Federal and State levels and any other tips I could locate. I had become a member of both the Childhood Apraxia of Speech, Apraxia-Kids, and CHERUB Facebook pages and read as many discussion boards as I could. These resources have really helped so that I don't feel so alone in all of this.
In January Nate was tested by the school district's SLP and a Psychologist. They spent a session at our home and another session was at their office. I talked with Nate before his assessments, reminding him that he needed to try his best. As I had mentioned before, he's never been much of the performing type and the more you try and push him to do something, the less he's likely to do it. He's a very independent guy, which is a characteristic that is helping him cope well. He did fine with all the assessments and we set the date for the initial IEP meeting.
Now I've never been on the parent end of an IEP meeting and being that I work in public education I was leery about the process. I know that school districts try to cut corners, so I was armed and as well read as I could possibly be. Several other parents on the Facebook discussion boards were cheering me on, so even support from complete strangers helped. We met as a team and I invited anyone that had worked with Nate to attend. The team consisted of the school district's SLP and psychologist, my husband, my mother (who helps out tremendously), me, his preschool teacher and his preschool's SLP. I wasn't sure about the preschool's SLP being there as I never really felt I had her support on the CAS diagnosis, so in a nice way, I asked if she wouldn't say anything. But during the meeting she acknowledged to the group that I had such strong feelings about the problems with Nate being apraxia and that she had been wrong. The more she had been reading and researching the more she had realized I was right. I was blown away. That really meant a lot to me that she would say that to the group of people that was there.
I was fairly happy with the IEP outcomes. Just as I had though, Nate scored at least average in all areas except for expressive language. (Duh!) So they suggested 2 sessions a week for 30 minutes. I asked about extending that to 3 times a week and they said I could call an IEP review meeting for that. I figure I'll wait and see if I can get any additional support from our health-care or the local university's speech center. I did have to ask for ESY (Extended Year Services) so that he would continue to have some therapy during the times the district was closed for the summer. I let the team know that I wanted to take the IEP home and reread it before I signed any of it. I am glad that I did.
It turned out that although we had all believed that the sessions would be 1-on-1 (which is what apraxics require), the IEP stated "group". I was livid. When I called the SLP about this, she explained that it was the way the form was set up and she had intended on 1-on-1 services. I told her that since his IEP is a legal document and would follow him if we were to move, that it had to say 1-on-1. She made the changes. I keep waiting for the hard part! It seems to all have gone too smoothly. The school district's SLP has attended several classes and seminars on CAS and I know we are very fortunate to have her working with our son.
I know that he needs more frequent intervention. He started therapy with the school district about 3 weeks ago. I haven't seen much of any progress made, but maybe it's too early to tell?
...
(Part 3 to come....the local university and more specialist appointments!)
I was pretty apprehensive about seeing the developmental pediatrician, as all the paperwork and information I had received from her office indicated that her specialty was working with ADHD or Autistic children. I definitely knew that Nate was not Autistic but I figured it would be better to rule it out. In the mean time, the OT and SLP at Nate's school continued to see him once or twice a week but I had become more frustrated with their lack of knowledge about CAS. They were sure it was something else. Mental retardation? They never said it but it seemed to be what they were suggesting. It can be so hard to be so sure about something and be told by professionals that you are not right. I truly believed that it was just their lack of knowledge about this disorder more than my being wrong. I had also begun reading the book The Late Talker, What to Do If Your Child Isn't Talking Yet by Dr. Marilyn Agin, which has continued to strengthen my thoughts about what is going on with Nate.
When we saw the Developmental Pediatrician, she appreciated that I had filled out the stack of paperwork. Of course, all this was geared towards kids with ADHD or Autism but I filled it out anyway. In thinking back on the evaluation, I should have insisted that she work with Nate first and ask us questions later because by the time she got into the room and finished questioning my husband and I, Nate was done. He was definitely not going to cooperate. Being that he's not a performer like some kids are, I was praying that he would show the doctor what he could and couldn't do. She asked him to stick out his tongue, which took him a while but he did. She asked him to move it side to side and he couldn't. I had him attempt the word "bubbles" because it was one that he and his preschool's SLP had been working on and he made an attempt, kind of opening and closing his mouth more like a fish. She thought it was good. (Are you kidding me? Good for a 2 1/2 year old??) I should have had him try to say the word banana because he probably would have just smiled like he always does when he knows it's not something he can't do. At the end of this appointment I ended up in tears because her response was, "at least he's learning". I couldn't believe that yet another doctor with years of training and specialization would come up with such a vague answer. Her report said to continue with present plan and return in 6 months for evaluation. Another frustrating dead end.
Meanwhile at Nate's preschool he was continuing to thrive and his amazing teachers really become in tune with him. They understood his mixture of signs, grunts, and expressive faces. The intonation and vocalizations he makes are really amazing for someone who has no words. I am thankful that he makes a lot of sounds and is determined to get his point across when need be.
During the months of December and January I started contacting our local school district (and university-more on that later) to get things rolling for an IEP since he would be turning 3 and the home therapy would be ending. The Late Talker book has so much information and even a chapter on getting the help you need, including a walk-through of the IEP process and all sorts of tips and suggestions. I also read all the information I could find on-line about the IEP process, both at the Federal and State levels and any other tips I could locate. I had become a member of both the Childhood Apraxia of Speech, Apraxia-Kids, and CHERUB Facebook pages and read as many discussion boards as I could. These resources have really helped so that I don't feel so alone in all of this.
In January Nate was tested by the school district's SLP and a Psychologist. They spent a session at our home and another session was at their office. I talked with Nate before his assessments, reminding him that he needed to try his best. As I had mentioned before, he's never been much of the performing type and the more you try and push him to do something, the less he's likely to do it. He's a very independent guy, which is a characteristic that is helping him cope well. He did fine with all the assessments and we set the date for the initial IEP meeting.
Now I've never been on the parent end of an IEP meeting and being that I work in public education I was leery about the process. I know that school districts try to cut corners, so I was armed and as well read as I could possibly be. Several other parents on the Facebook discussion boards were cheering me on, so even support from complete strangers helped. We met as a team and I invited anyone that had worked with Nate to attend. The team consisted of the school district's SLP and psychologist, my husband, my mother (who helps out tremendously), me, his preschool teacher and his preschool's SLP. I wasn't sure about the preschool's SLP being there as I never really felt I had her support on the CAS diagnosis, so in a nice way, I asked if she wouldn't say anything. But during the meeting she acknowledged to the group that I had such strong feelings about the problems with Nate being apraxia and that she had been wrong. The more she had been reading and researching the more she had realized I was right. I was blown away. That really meant a lot to me that she would say that to the group of people that was there.
I was fairly happy with the IEP outcomes. Just as I had though, Nate scored at least average in all areas except for expressive language. (Duh!) So they suggested 2 sessions a week for 30 minutes. I asked about extending that to 3 times a week and they said I could call an IEP review meeting for that. I figure I'll wait and see if I can get any additional support from our health-care or the local university's speech center. I did have to ask for ESY (Extended Year Services) so that he would continue to have some therapy during the times the district was closed for the summer. I let the team know that I wanted to take the IEP home and reread it before I signed any of it. I am glad that I did.
It turned out that although we had all believed that the sessions would be 1-on-1 (which is what apraxics require), the IEP stated "group". I was livid. When I called the SLP about this, she explained that it was the way the form was set up and she had intended on 1-on-1 services. I told her that since his IEP is a legal document and would follow him if we were to move, that it had to say 1-on-1. She made the changes. I keep waiting for the hard part! It seems to all have gone too smoothly. The school district's SLP has attended several classes and seminars on CAS and I know we are very fortunate to have her working with our son.
I know that he needs more frequent intervention. He started therapy with the school district about 3 weeks ago. I haven't seen much of any progress made, but maybe it's too early to tell?
...
(Part 3 to come....the local university and more specialist appointments!)
The Journey So Far...
So how did we get to this point? I had a fairly normal pregnancy, some blood pressure issues, but nothing too concerning, and a drug-free/intervention-free delivery. Nate weighed in at 9 pounds 13 ounces, probably one ice cream sundae short of 10 pounds! He was a happy and easy going baby, sleeping through the night at 3 months. It wasn't until he was about a 1 that I started to think something was a little different. He didn't seem to babble much and when he did it was really noticeable-probably because it was so rare. He was very active and even though he wasn't walking he "army" crawled everywhere. And he was quick! We all just figured that being he was the youngest of 3 boys, that things were maybe a little behind being that he was the baby of the family.
At 18 months he started preschool and at that time he still wasn't walking. He continued doing the army crawl or hands and feet when needed. He didn't seem to mind. At 19 months he decided it was time to walk. All the while he was being seen by a Speech-Language Pathologist (SLP) and an Occupational Therapist (OT) once or twice a week through his preschool. By the time he turned 2, we clearly knew something was definitely wrong in that all he could say was a sequence of vowel sounds, mostly short a (like in cat) or oo (like in moo). Not a single word, including dada or mama. He was communicating, just without words. It was worrisome but everyone tried to reassure us that he was just a late talker or that everyone was doing the talking for him. (These kinds of 'helpful' reassurances get tiring after a while).
We took him into his pediatrician who referred us to another SLP. She was young and had recently graduated. It was almost as if she didn't quite seem to know what to do with him and since he was only 2, stated that he possibly had a language delay (there's a big difference between "delay" and "disorder", but I didn't know that at the time). Since it wasn't a medical issue, he could not been seen through our health-care provider. This was disappointing news but she recommended that we look into the local area's Regional Center who could direct us to resources that might help. At the time I was continuing my on-line research into what might be wrong. Googling anything that had to do with children understanding everything but not being able to speak. I had never heard of Apraxia or Childhood Apraxia of Speech (CAS) but through many hours spent on-line this seemed to be a possibility. Many of the descriptors seemed to match.
The Regional Center sent a nurse and clinician to do some assessing on Nate late in the spring. They agreed that he was a delightful boy and that in most areas he scored average, except in expressive language. The only thing he qualified for was an in-home play therapist. As I continued reading and researching, I felt more and more strongly that CAS was the disorder that Nate had. He enjoyed working with the therapist who came to our house and we all worked hard on increasing our knowledge of sign language (ASL). I printed out photos and reminders of the signs and posted them around the house. Being that none of us are hard of hearing or have much experience with ASL, we had to work on it. Now he knows between 40-50 signs and has many of his own gestures or sounds. It has definitely helped to decrease his frustration in being able to communicate his needs.
....
At 18 months he started preschool and at that time he still wasn't walking. He continued doing the army crawl or hands and feet when needed. He didn't seem to mind. At 19 months he decided it was time to walk. All the while he was being seen by a Speech-Language Pathologist (SLP) and an Occupational Therapist (OT) once or twice a week through his preschool. By the time he turned 2, we clearly knew something was definitely wrong in that all he could say was a sequence of vowel sounds, mostly short a (like in cat) or oo (like in moo). Not a single word, including dada or mama. He was communicating, just without words. It was worrisome but everyone tried to reassure us that he was just a late talker or that everyone was doing the talking for him. (These kinds of 'helpful' reassurances get tiring after a while).
We took him into his pediatrician who referred us to another SLP. She was young and had recently graduated. It was almost as if she didn't quite seem to know what to do with him and since he was only 2, stated that he possibly had a language delay (there's a big difference between "delay" and "disorder", but I didn't know that at the time). Since it wasn't a medical issue, he could not been seen through our health-care provider. This was disappointing news but she recommended that we look into the local area's Regional Center who could direct us to resources that might help. At the time I was continuing my on-line research into what might be wrong. Googling anything that had to do with children understanding everything but not being able to speak. I had never heard of Apraxia or Childhood Apraxia of Speech (CAS) but through many hours spent on-line this seemed to be a possibility. Many of the descriptors seemed to match.
The Regional Center sent a nurse and clinician to do some assessing on Nate late in the spring. They agreed that he was a delightful boy and that in most areas he scored average, except in expressive language. The only thing he qualified for was an in-home play therapist. As I continued reading and researching, I felt more and more strongly that CAS was the disorder that Nate had. He enjoyed working with the therapist who came to our house and we all worked hard on increasing our knowledge of sign language (ASL). I printed out photos and reminders of the signs and posted them around the house. Being that none of us are hard of hearing or have much experience with ASL, we had to work on it. Now he knows between 40-50 signs and has many of his own gestures or sounds. It has definitely helped to decrease his frustration in being able to communicate his needs.
....
Journey
I woke up this morning thinking about my 3-year old and his ongoing journey with apraxia (childhood apraxia of speech). As we continue on this unknown path, we don't know where we're headed. As an organizer and planner, this is so hard for me. Every day we are learning something new about his disorder and about him. We have many questions. What additional therapy might he need? Are we doing enough? What will life be like in 1 year or 5 years?
If you're not familiar with CAS, it's a motor speech disorder. Children with it have problem saying sounds and ultimately words. It's not because their muscles are weak, but somehow the brain has a problem getting the thoughts to come out. Like the lips, tongue, and jaw can't move in the proper sequence or sometimes not even at all. It's as if every word or utterance takes a tremendous amount of thought. Speaking is extremely difficult. At 3 years old, our son has never said mom, cannot say his name or share any of his thoughts. He has found ways to communicate through American Sign Language or his own gestures and sounds and through this we are discovering just how amazing he is.
I've reached out through the on-line forums and found some connections but there are times where I feel alone and want to talk about what we are going through. I decided today would be the day that I start a blog as a way to share the things we are doing, how we are feeling, and connect with others who are going through some of the same things.
So here's to a journey with an amazing little boy.
“One of the hardest things in life is having words in your heart that you can't utter.”
-James Earl Jones
If you're not familiar with CAS, it's a motor speech disorder. Children with it have problem saying sounds and ultimately words. It's not because their muscles are weak, but somehow the brain has a problem getting the thoughts to come out. Like the lips, tongue, and jaw can't move in the proper sequence or sometimes not even at all. It's as if every word or utterance takes a tremendous amount of thought. Speaking is extremely difficult. At 3 years old, our son has never said mom, cannot say his name or share any of his thoughts. He has found ways to communicate through American Sign Language or his own gestures and sounds and through this we are discovering just how amazing he is.
I've reached out through the on-line forums and found some connections but there are times where I feel alone and want to talk about what we are going through. I decided today would be the day that I start a blog as a way to share the things we are doing, how we are feeling, and connect with others who are going through some of the same things.
So here's to a journey with an amazing little boy.
“One of the hardest things in life is having words in your heart that you can't utter.”
-James Earl Jones
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