We took Nathan to Indy for his evaluation today. We had a Speech Language Pathologist and an Occupational Therapist evaluate him and once it was over, the SLP sat down with me and said "Yeah, he's 100% apraxic." Of course it would have been nice to hear her say that everything was fine and he would start talking at any time, but I was positive he had apraxia, so it definitely wasn't a shock. The good thing is that most kids don't get diagnosed until they are at least three because it's pretty rare and hard to diagnose, but Nathan is pretty much a textbook case. So now that we have an actual diagnosis, we can begin the fight with insurance to cover more than the 20 visits per year we are allowed. But if they deny it, we'll still get him as much therapy as we possibly can because there is nothing more important right now than getting Nathan the help that he needs.
Oh, and he also has Sensory Processing Disorder, which I also knew but now it is diagnosed. The thing I was confused about is that he is such a sensory seeker, but at the same time is very defensive. The OT told me that he is a rare breed, but I guess we knew that too :) The last thing they told me is that he has absolutely no sign of being on the autism spectrum. These therapists actually work almost solely with autistic kids, so they would be able to spot it quickly if he had any markers, but they said he was not on the spectrum at all. The behaviors that we have been concerned with are all part of the Sensory Processing Disorder.
So where does all of this information leave us? Very overwhelmed... so much to learn and so much we need to do to help Nathan at home. We have to decide whether we want to drive to Indy once a week for Speech and Occupational Therapy, or just go once a month for them to track his progress. We also need to decide if we want him to have Occupational Therapy in Terre Haute where he is currently having his speech therapy. The last thing I want to do is overload him, but I also want to get him the help he needs. Oh, and we start Developmental Therapy tomorrow with First Steps. Anyway, it's a lot to think about.
So I'll leave this blog on a sweet note tonight. We were eating lunch at Fazoli's in Indy and two women at the table next to us were praying. He pointed and said "ah" (which means what are they doing?). I told him they were talking to Jesus, so he put his hands together like we always do when we talk to Jesus. Such a sweet kid. So if any of you happen to be talking to Jesus tonight, please ask Him to lead us in the right direction and help us to know what is best for our Nathan.
Tuesday, November 24, 2009
Sunday, November 22, 2009
He called me mama!
One of the things all parents look forward to is their child saying mama and dada. Although Nathan would babble "amamama" occasionally (it always started with an a) in his two years he has never directed any of his babbling at me. This morning as we were getting up and dressed Nathan came down the hall and said "Mama!". At first I thought it was an accident or I was hearing things. I asked him to repeat it and he said "Mama!". Let me tell you, that was one of the best things I have ever heard! He continued to say it all day and at one point even went to Bill and asked "Mama?" and shrugged his shoulders because he didn't know where I was.
I am continually amazed at the progress he has made in the last couple of weeks. I have been doing a lot of research on essential fatty acids and myelination and I am keeping Nathan greased up with fish oil :). It is all so interesting to me since it's a lot of what I studied in school (behavioral neuroscience). I guess that is the nerd in me, but I really feel like it is helping Nathan.
I do have to admit though, as excited as we all have been with his progress, there are times when I am brought back to Earth and remember that Nathan has a serious problem. Like the many times we go to Toys R Us and of course Nathan heads straight for the train table. There are usually other kids his age talking and laughing, and Nathan is pointing and saying "eh eh eh!". The other parents look at me, wondering what is wrong with my child. Or this morning, when we took Nathan for his two year pictures and the photographer asked his name and he just stared at her. She asked a couple more times, and I had to explain that he isn't talking yet. I really try not to let these things get me down, and instead focus on the positive. And today, I am positive that there is nothing better than being Nathan's mama.
I am continually amazed at the progress he has made in the last couple of weeks. I have been doing a lot of research on essential fatty acids and myelination and I am keeping Nathan greased up with fish oil :). It is all so interesting to me since it's a lot of what I studied in school (behavioral neuroscience). I guess that is the nerd in me, but I really feel like it is helping Nathan.
I do have to admit though, as excited as we all have been with his progress, there are times when I am brought back to Earth and remember that Nathan has a serious problem. Like the many times we go to Toys R Us and of course Nathan heads straight for the train table. There are usually other kids his age talking and laughing, and Nathan is pointing and saying "eh eh eh!". The other parents look at me, wondering what is wrong with my child. Or this morning, when we took Nathan for his two year pictures and the photographer asked his name and he just stared at her. She asked a couple more times, and I had to explain that he isn't talking yet. I really try not to let these things get me down, and instead focus on the positive. And today, I am positive that there is nothing better than being Nathan's mama.
Wednesday, November 18, 2009
What an awesome day!
Nathan had a great therapy session today. He was able to stay very focused (for a 2 year old) and made attempts at many different sounds and a couple of words! He seems to really be bonding with Tracy and she has been doing a great job of getting him to work. He also picked up several new signs today.
Off topic --> After dropping Nathan back off and finishing up my work, I took Sir-Grumps-A-Lot to Olan Mills for his 3 month pictures. I have seriously never seen a baby who looked more like a grumpy old man than he does! He sat with a furrowed brow and pouty bottom lip without even attempting to smile for most of his pictures. She finally got a couple of semi-smiles out of him, but with the smiles also came tears. Oh, what fun!
Anyway, Nathan finished the day by saying hat and pop for the first time. Hat came in two parts: ha-t, but he was able to produce all the sounds so I was thrilled! This week has definitely given me hope that he will, at some point, be able to speak. God is good!
Off topic --> After dropping Nathan back off and finishing up my work, I took Sir-Grumps-A-Lot to Olan Mills for his 3 month pictures. I have seriously never seen a baby who looked more like a grumpy old man than he does! He sat with a furrowed brow and pouty bottom lip without even attempting to smile for most of his pictures. She finally got a couple of semi-smiles out of him, but with the smiles also came tears. Oh, what fun!
Anyway, Nathan finished the day by saying hat and pop for the first time. Hat came in two parts: ha-t, but he was able to produce all the sounds so I was thrilled! This week has definitely given me hope that he will, at some point, be able to speak. God is good!
Tuesday, November 17, 2009
Ooh and Aah
First off, sorry for the lack of updates. You'll have to forgive me- I knew I would be terrible at keeping this blog updated! Secondly, we now have a two year old!! Nathan turned two on Sunday and had a wonderful birthday party surrounded by family, friends and of course Thomas the Train.
Just as exciting, however is the improvement we have noticed in Nathan over the past few days. While watching the Ooh and Aah monkeys on the Disney channel, my dad asked him if he could say "ooh" which he could and he did the same with "aah". Not only that, but when I picked him up and asked him who his monkey friends were he said "ooh...aah" without being prompted! I know this doesn't seem like much for a two year old, but it is huge for Nathan. Today my mom busted out the flash cards and he imitated several different sounds for her. And to top it off we went to Toys R Us (which he gets so excited about I think he probably pees himself when he gets out of the car and sees where we are!) and he pointed up at the sign and made the t, o and s sounds. He's been on the Pro-EFA for almost two weeks now, so I don't know if that has anything to do with it or not, but it is awesome to hear him make so many sounds. And he is so proud of himself too- sometimes he'll even clap for himself! Too cute :)
He has another therapy session tomorrow, so I'll really try to update then.
Tuesday, November 10, 2009
Something is definitely wrong...
The following is a timeline of what has happened in the past couple of weeks:
October 23
First Steps came out to do Nathan's evaluation. They were very impressed with his development and continually told us how intelligent he is. He passed about 95% of the 3 year old skills... other than expressive language. Yep, he couldn't utter a single word. He could follow 3 step commands, figure out any puzzle, pattern or problem they gave him, he knew 1-5, most of his letters and several colors and shapes. He jumped like a mad man, threw balls, kicked balls and showed excellent fine motor skills. That's when they told us that something was definitely wrong. It is more than a developmental delay. They were at a total loss and had no idea what could be going on. That evening while speaking with my sister-in-law, who has an autistic son and has become such an expert at all of this stuff, she mentioned apraxia. I had heard of this disorder, but knew nothing about it. I ended up spending hours online reading everything I could find about it, and unfortunately it seemed to describe Nathan perfectly.
What is apraxia? Basically it's a neurological disorder that prohibits a message from getting to the mouth from the brain. The area of the brain that tells the mouth which muscles to move to make a sound are damaged or not fully developed. Kids with this disorder know what they want to say, but cannot begin to actually say it.
October 26
The awesome therapist from First Steps who did Nathan's evaluation called and said she had been doing some research and thought she may know what is going on. You guessed it- she thinks he has apraxia. I let her know that I had been researching it all weekend and believed she was correct. I immediately got on the phone and called a Speech Language Pathologist and made an appointment for an evaluation. If this really was his diagnosis, he would need intense therapy as soon as possible.
November 4
We took Nathan for his speech evaluation. We loved the therapist and she was really optimistic that she could help him. She informed us that there was a very good chance he has apraxia, but will need to spend a little more time with him before she makes a diagnosis. She, like First Steps said that she didn't see signs of classic autism, but we needed to continue to watch for PDD-NOS.
November 6
First Steps came back for the IFSP. Nathan qualified for speech therapy, but since there are no speech therapists currently on the matrix he will have developmental therapy instead. This actually works out better, since our insurance would not cover private speech therapy and allow speech therapy with First Steps. So we found a developmental therapist who happened to have a speech background.
Today
This takes us up to today. We have his first speech therapy session tomorrow. We also have an evaluation scheduled in Indianapolis with my nephew's therapist in a couple of weeks and an evaluation at Indiana State in December. We're hoping to get as many perspectives as possible to make sure we are not missing anything. In the meantime, I have started Nathan on Pro-EFA (a specific blend of fish oil that has shown to really improve the speech of apraxic children), we have been blowing out candles, blowing whistles, sucking yogurt with straws, making all kinds of facial expressions, having him eat crunchy foods with his molars, and teaching him more sign language. We're trying very hard to keep it fun for Nathan, and as social as he is, he loves the attention of the therapists and all the new toys :). I'll report tomorrow on his first therapy session- for now I'm off to fold three days worth of diapers that are still sitting in a clothes basket!
October 23
First Steps came out to do Nathan's evaluation. They were very impressed with his development and continually told us how intelligent he is. He passed about 95% of the 3 year old skills... other than expressive language. Yep, he couldn't utter a single word. He could follow 3 step commands, figure out any puzzle, pattern or problem they gave him, he knew 1-5, most of his letters and several colors and shapes. He jumped like a mad man, threw balls, kicked balls and showed excellent fine motor skills. That's when they told us that something was definitely wrong. It is more than a developmental delay. They were at a total loss and had no idea what could be going on. That evening while speaking with my sister-in-law, who has an autistic son and has become such an expert at all of this stuff, she mentioned apraxia. I had heard of this disorder, but knew nothing about it. I ended up spending hours online reading everything I could find about it, and unfortunately it seemed to describe Nathan perfectly.
What is apraxia? Basically it's a neurological disorder that prohibits a message from getting to the mouth from the brain. The area of the brain that tells the mouth which muscles to move to make a sound are damaged or not fully developed. Kids with this disorder know what they want to say, but cannot begin to actually say it.
October 26
The awesome therapist from First Steps who did Nathan's evaluation called and said she had been doing some research and thought she may know what is going on. You guessed it- she thinks he has apraxia. I let her know that I had been researching it all weekend and believed she was correct. I immediately got on the phone and called a Speech Language Pathologist and made an appointment for an evaluation. If this really was his diagnosis, he would need intense therapy as soon as possible.
November 4
We took Nathan for his speech evaluation. We loved the therapist and she was really optimistic that she could help him. She informed us that there was a very good chance he has apraxia, but will need to spend a little more time with him before she makes a diagnosis. She, like First Steps said that she didn't see signs of classic autism, but we needed to continue to watch for PDD-NOS.
November 6
First Steps came back for the IFSP. Nathan qualified for speech therapy, but since there are no speech therapists currently on the matrix he will have developmental therapy instead. This actually works out better, since our insurance would not cover private speech therapy and allow speech therapy with First Steps. So we found a developmental therapist who happened to have a speech background.
Today
This takes us up to today. We have his first speech therapy session tomorrow. We also have an evaluation scheduled in Indianapolis with my nephew's therapist in a couple of weeks and an evaluation at Indiana State in December. We're hoping to get as many perspectives as possible to make sure we are not missing anything. In the meantime, I have started Nathan on Pro-EFA (a specific blend of fish oil that has shown to really improve the speech of apraxic children), we have been blowing out candles, blowing whistles, sucking yogurt with straws, making all kinds of facial expressions, having him eat crunchy foods with his molars, and teaching him more sign language. We're trying very hard to keep it fun for Nathan, and as social as he is, he loves the attention of the therapists and all the new toys :). I'll report tomorrow on his first therapy session- for now I'm off to fold three days worth of diapers that are still sitting in a clothes basket!
Wow, where do I start?
Why did I start this blog? Anyone who knows me knows how much I hate to write. Just ask my co-workers. I'm an accountant... I do numbers not words. So I guess I am doing this for myself so that I can have a record of our journey. I am doing this for Nathan so he can someday understand how hard he worked for his accomplishments and see how far he has come. And I'm doing this for anyone who, for whatever reason wants to follow my ramblings and share in Nathan's successes. So, with that said I guess I should start from the very beginning.
I found out that I was pregnant with Nathan in February 2007. My husband and I were ecstatic. The pregnancy was perfectly normal, and aside from some sickness in the beginning and swelling toward the end I absolutely loved being pregnant. Nathan decided he was ready almost 2 weeks early and entered this world on November 15, 2007. To say he was perfect would be an understatement. I had no idea that I could have so much love for someone I had never laid eyes on until that moment. He was such a miracle and a blessing.
On Nathan's second night in the hospital he began having horrible choking spells. The nurses assured us this was normal, but it eventually led to a diagnosis of severe reflux. Nathan spent the first few months of his life screaming, crying, choking, and being continually medicated for it (Reglan, Prilosec, Bentyl). We made several trips to Riley to see his fabulous GI, and by about 4 months the colic was much better but the reflux continued into his second year. Other than this, a couple of ear infections and a bout with RSV, he had no other issues. In fact, he seemed to be far ahead of the "normal" developmental timeline- walking right at 10 months, running at 12 months, incredible fine motor skills, cognition and social skills.
Right before Nathan's first birthday, our family packed up and moved from Greenwood back to West Terre Haute where I grew up. We couldn't find a way for me to be able to stay home with him, so we decided that having him with his grandma would be the next best place for him. My wonderful mom retired from her job of almost 25 years and became a stay-at-home-mamaw.
We thought it was strange at 12 months that Nathan didn't really have any true words. In fact I talked to our pediatrician about it right before we moved. Of course she said not to worry, he would talk when he was ready, and he was just more focused on motor skills. It was the same story from when he was a baby and I reported that he didn't seem to coo or babble much. In fact, the only noises he consistently made were grunts, deep guttural noises and high shrieks. By 18 months when he had only a handful of words (hello, Elmo, hot) but still didn't really call my husband or me by anything I became very concerned. This time- different doctor, same response. I mentioned First Steps but he said Nathan would have a "language burst" by age 2 and I would forget all about my concerns.
So fast forward to October 2009. Nathan is almost two. Those few words he had at 18 months? Gone. The only "words" he says now are "uh-oh" and "wow-wow-wow" (when he sees something he REALLY likes- lol!). I finally decided to call First Steps without his doctor's blessing, and it's been a whirlwind since that point. In fact, I think I'll start another post :)
I found out that I was pregnant with Nathan in February 2007. My husband and I were ecstatic. The pregnancy was perfectly normal, and aside from some sickness in the beginning and swelling toward the end I absolutely loved being pregnant. Nathan decided he was ready almost 2 weeks early and entered this world on November 15, 2007. To say he was perfect would be an understatement. I had no idea that I could have so much love for someone I had never laid eyes on until that moment. He was such a miracle and a blessing.
On Nathan's second night in the hospital he began having horrible choking spells. The nurses assured us this was normal, but it eventually led to a diagnosis of severe reflux. Nathan spent the first few months of his life screaming, crying, choking, and being continually medicated for it (Reglan, Prilosec, Bentyl). We made several trips to Riley to see his fabulous GI, and by about 4 months the colic was much better but the reflux continued into his second year. Other than this, a couple of ear infections and a bout with RSV, he had no other issues. In fact, he seemed to be far ahead of the "normal" developmental timeline- walking right at 10 months, running at 12 months, incredible fine motor skills, cognition and social skills.
Right before Nathan's first birthday, our family packed up and moved from Greenwood back to West Terre Haute where I grew up. We couldn't find a way for me to be able to stay home with him, so we decided that having him with his grandma would be the next best place for him. My wonderful mom retired from her job of almost 25 years and became a stay-at-home-mamaw.
We thought it was strange at 12 months that Nathan didn't really have any true words. In fact I talked to our pediatrician about it right before we moved. Of course she said not to worry, he would talk when he was ready, and he was just more focused on motor skills. It was the same story from when he was a baby and I reported that he didn't seem to coo or babble much. In fact, the only noises he consistently made were grunts, deep guttural noises and high shrieks. By 18 months when he had only a handful of words (hello, Elmo, hot) but still didn't really call my husband or me by anything I became very concerned. This time- different doctor, same response. I mentioned First Steps but he said Nathan would have a "language burst" by age 2 and I would forget all about my concerns.
So fast forward to October 2009. Nathan is almost two. Those few words he had at 18 months? Gone. The only "words" he says now are "uh-oh" and "wow-wow-wow" (when he sees something he REALLY likes- lol!). I finally decided to call First Steps without his doctor's blessing, and it's been a whirlwind since that point. In fact, I think I'll start another post :)
Subscribe to:
Posts (Atom)