Dyspraxia & Apraxia Support Group
Dyspraxia is difficulty getting the body to do what we want when we want to do it. Apraxia is a neurological disorder characterized by being unable to execute or carry out learned (familiar) movements, even if the desire and physical ability is there. This group is dedicated to those coping with either aprxia or dyspraxia. Join the group to find support and get advice.
Hi, I'm new to the group.
My 3yr-10mo old son was diagnosed this past week with "mixed receptive-expressive language disorder and apraxia of speech". We realized his speech was delayed when he was around 20 months of age, though our parents keep telling us not to worry, that boys on both sides of the family didn't speak until they were about three years old. There are a LOT of boys (uncles) in my side, especially. However, our son had two horrible febrile seizures at 12 and 13 months of age from fevers that spiked well above 105 degrees, which put him in the ER. We thought he'd died as he went limp and we couldn't feel him breathing or find a hearbeat. After this, the cooing, mimicking of speech, the few words he had, stopped and he had only a random word or two such as "Hi" or "Dirt" or "Outside" when he was about 20 months old.
This is his third evaluation since slightly over 24 months of age, simply because we have had difficulty getting him treatment. Evaluations - oh, yes. They were easy to come by.
His first evaluation at 24 months found that he was "very slightly speech delayed" and would need therapy once per week for 1/2 hour. Getting him in to see a therapist proved impossible, even with being put on the cancellation list for ANY available SLP, in six months he was unable to be seen. We ended up moving for work, and he hadn't had a single session.
His next therapist saw him quickly, gave him an evaluation with a six-month and one-year treatment plan - but no diagnosis beyond a speech delay. She saw him for half and hour once per week for over two month (after "catching up", his sessions were actually no more than 15 minutes long). Therapy consisted of her showing him how to play Splingo on the iPad and then taking it from him to prompt him to say "more" - basically, he laughed and did well with Splingo, then cried as he was "punished" when the iPad was taken from him. After two months I asked if she would like to see him more and was told "No, once per week is enough, he's doing fine.". I disagreed. I asked what we could do at home to help her efforts. She said "Oh, just read to him. Ask him to point out things lilke who is running or doing actions. You know, it's really not impressive that he knows the names of his favorite animated characters. He should know action words." When my son started seeing her in March/April of this year, he could say maybe ten to twelve words. He said one sentence "Wan go ow-side!" My son did not progress with her.
However, we began working with him following ideas in the book "It Takes Two To Talk", purchasing a LeapPad and downloading their Scout and Friends language and counting apps (counting because he loves to count and it gets him to speak), and we also downloaded the SuperWhy cartoons. We got in the habit of talking as we did everything, even to the point of "Now I'm washing the big plates, see all the bubbles?" As of August (we kept a list of his words and sentences) my son has said at least two hundred words, knows how to count to twenty, knows most colors, knows basic shapes (though he can pronounce "square" and "circle" relatively clearly, and can say at least two dozen or more sentences of at least two or three words or more. Once we got him an iPad with Splingo, Language with Milo and Netflix, his language soared through the roof. He uses phrases from his favorite shows (SuperWhy, Tree Fu Tom, Thomas the Train, Special Agent Oso, etc) appropriately - i.e. "Come on, follow me!" or "Come on, let's go!" when he takes your hand and wants you to come with him.
The new SLP he saw last week is a Ph.D. and (we found out yesterday) an Autism Specialist. I'm not happy about the Autism portion, simply because I think everyone is super-quick to label children with SPD, language delays, or just personality characteristics that don't fit in with societal "norms" - the boy who LIKES to be in quiet areas and read, or the girl who LIKES to climb trees - as autistic. She gave us the current diagnosis. She has said that some of his actions in the three days are those "shared" with autistic children, but she doesn't make any diagnosis in that area until after a month of observation.
I believed my son was also having difficulty controlling his emotions because he was frustrated at being unable to communicate. He's very aware that he is not "speaking the same language" as everyone else and that others don't understand him. It turns out he has some sensory processing disorders (he's sensory-seeking subtype). There are vestibular issues, dyxpraxia with his motions (so they say) but he is a super-coordinated, strong and healthy child by other reports the OTs provide, so I'm a little confused on that. However, OT is progressing well, and there's not much work for us to do in that arena except to get him to his therapy twice per week and hope they can find a way to keep him from jumping off of the highest pinnacles he can find every day.
I work from home, and our business is hugely busy as we work for the Government. I spend every minute from 5:00 AM til 9:00 PM when I finally get this child to sleep working and the greatest portion of it is with him. And, since insurance doesn't cover any of the SPD or SLP diagnoses, all of this treatment is going to be out of pocket: two therapy sessions for each type of therapist per week. $1000/mo for the OTs, and $1200/month for the SLP. There's no way we're going to deny him the "intensive therapy" the SLP says he needs for at least a year, as she says he's 1.5 years behind.
I apologize for the long post, but to my question: Since getting the diagnosis and report from the SLP Thusday night (my son is receiving PLAY method therapy both in Speech and OT), I have had a ball of dread in my stomach. I'm terrified and I've been crying. Where am I going to find "at least" 15 hours of dedicated time to work with him each week just for speech, on top of what I'm doing with him (regular care, going to therapy, etc)? I don't even shower some days! Does anyone have any ideas? I'm terrified I'm going to fail at this.
My 3yr-10mo old son was diagnosed this past week with "mixed receptive-expressive language disorder and apraxia of speech". We realized his speech was delayed when he was around 20 months of age, though our parents keep telling us not to worry, that boys on both sides of the family didn't speak until they were about three years old. There are a LOT of boys (uncles) in my side, especially. However, our son had two horrible febrile seizures at 12 and 13 months of age from fevers that spiked well above 105 degrees, which put him in the ER. We thought he'd died as he went limp and we couldn't feel him breathing or find a hearbeat. After this, the cooing, mimicking of speech, the few words he had, stopped and he had only a random word or two such as "Hi" or "Dirt" or "Outside" when he was about 20 months old.
This is his third evaluation since slightly over 24 months of age, simply because we have had difficulty getting him treatment. Evaluations - oh, yes. They were easy to come by.
His first evaluation at 24 months found that he was "very slightly speech delayed" and would need therapy once per week for 1/2 hour. Getting him in to see a therapist proved impossible, even with being put on the cancellation list for ANY available SLP, in six months he was unable to be seen. We ended up moving for work, and he hadn't had a single session.
His next therapist saw him quickly, gave him an evaluation with a six-month and one-year treatment plan - but no diagnosis beyond a speech delay. She saw him for half and hour once per week for over two month (after "catching up", his sessions were actually no more than 15 minutes long). Therapy consisted of her showing him how to play Splingo on the iPad and then taking it from him to prompt him to say "more" - basically, he laughed and did well with Splingo, then cried as he was "punished" when the iPad was taken from him. After two months I asked if she would like to see him more and was told "No, once per week is enough, he's doing fine.". I disagreed. I asked what we could do at home to help her efforts. She said "Oh, just read to him. Ask him to point out things lilke who is running or doing actions. You know, it's really not impressive that he knows the names of his favorite animated characters. He should know action words." When my son started seeing her in March/April of this year, he could say maybe ten to twelve words. He said one sentence "Wan go ow-side!" My son did not progress with her.
However, we began working with him following ideas in the book "It Takes Two To Talk", purchasing a LeapPad and downloading their Scout and Friends language and counting apps (counting because he loves to count and it gets him to speak), and we also downloaded the SuperWhy cartoons. We got in the habit of talking as we did everything, even to the point of "Now I'm washing the big plates, see all the bubbles?" As of August (we kept a list of his words and sentences) my son has said at least two hundred words, knows how to count to twenty, knows most colors, knows basic shapes (though he can pronounce "square" and "circle" relatively clearly, and can say at least two dozen or more sentences of at least two or three words or more. Once we got him an iPad with Splingo, Language with Milo and Netflix, his language soared through the roof. He uses phrases from his favorite shows (SuperWhy, Tree Fu Tom, Thomas the Train, Special Agent Oso, etc) appropriately - i.e. "Come on, follow me!" or "Come on, let's go!" when he takes your hand and wants you to come with him.
The new SLP he saw last week is a Ph.D. and (we found out yesterday) an Autism Specialist. I'm not happy about the Autism portion, simply because I think everyone is super-quick to label children with SPD, language delays, or just personality characteristics that don't fit in with societal "norms" - the boy who LIKES to be in quiet areas and read, or the girl who LIKES to climb trees - as autistic. She gave us the current diagnosis. She has said that some of his actions in the three days are those "shared" with autistic children, but she doesn't make any diagnosis in that area until after a month of observation.
I believed my son was also having difficulty controlling his emotions because he was frustrated at being unable to communicate. He's very aware that he is not "speaking the same language" as everyone else and that others don't understand him. It turns out he has some sensory processing disorders (he's sensory-seeking subtype). There are vestibular issues, dyxpraxia with his motions (so they say) but he is a super-coordinated, strong and healthy child by other reports the OTs provide, so I'm a little confused on that. However, OT is progressing well, and there's not much work for us to do in that arena except to get him to his therapy twice per week and hope they can find a way to keep him from jumping off of the highest pinnacles he can find every day.
I work from home, and our business is hugely busy as we work for the Government. I spend every minute from 5:00 AM til 9:00 PM when I finally get this child to sleep working and the greatest portion of it is with him. And, since insurance doesn't cover any of the SPD or SLP diagnoses, all of this treatment is going to be out of pocket: two therapy sessions for each type of therapist per week. $1000/mo for the OTs, and $1200/month for the SLP. There's no way we're going to deny him the "intensive therapy" the SLP says he needs for at least a year, as she says he's 1.5 years behind.
I apologize for the long post, but to my question: Since getting the diagnosis and report from the SLP Thusday night (my son is receiving PLAY method therapy both in Speech and OT), I have had a ball of dread in my stomach. I'm terrified and I've been crying. Where am I going to find "at least" 15 hours of dedicated time to work with him each week just for speech, on top of what I'm doing with him (regular care, going to therapy, etc)? I don't even shower some days! Does anyone have any ideas? I'm terrified I'm going to fail at this.
chloemarguerite
My son was diagnosed with apraxia in May... finding the time to work with them is tough. Some how you will just manage, because you have to . http://oursilenthouse.com Check out this blog about our journey and different obstacles we've faced along the way. Also, have you tried fighting ins... apraxia is a neurological disorder. Our ins originally denied because they considered it a delay but I appealed with appropriate evidence that it is not a delay but a neuro condition and they approved it. Hope this helps :) good luck
Bashful
If your son is 3 years old he should be able to receive services through your local school system. My daughter went to a full time preschool program that encouraged language and speech. The therapists traveled to her preschool to work with her.
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