AJ has been doing well. He completed 2 years of Kindergarten. We decided that a second year was a good idea. He has a September birthday so he was a young 5 anyway and needed the extra time to catch up on reading and writing skills. It seems that we spent all that time working on getting speech assistance for him and neglected the pre-K phonics a bit. Anyhow he's doing much better after the second year and is READING.
I was so worried because so many apraxic kids have such challenges with reading. AJ did and still does struggle with it but he can do it. It's hard and he prefers not to but he can.
Socially he is making friends and having fun. I can hardly believe this is the same child who used to throw himself on the floor screaming with frustration at not being able to make himself understood.
AJ has continued to have speech therapy through his school twice a week and has progressed from working on pronunciation to usage issues. He will continue next year. Overall a pretty rosy picture.
We do have some new /revisited concerns. I have always believed that AJ has at least a mild form of sensory integration disorder. He was a pretty quirky child and had a lot of "soft signs". Since he has grown out of most of them- sensitivity to sunlight, issues with food textures, intolerance of anything sticky on his hands etc.- I was not pursuing treatment for them. However a few things have persisted/worsened.
AJ is constantly complaining that he is cold. He can be in a room where everyone else is sweating and he states that he is "freezing"
He has had two episodes where he has faced extreme disappointment and had hysterical meltdowns screaming that he is "itchy" and clawing at his skin to the point of drawing blood. He also got very worked up about a blood draw at the doctor's office culminating in him screaming "itchy" again and clawing at the injection site! He does have eczema and has woken from a sleep scratching at his legs etc. but this was EXTREME! We have been treating his eczema for years, only use Aveeno products for bath and lotion, use dye free, perfume free detergents, and now have him taking zyrtec daily. It seems to have improved but those episodes were scary. He was completely unconsolable.
He has been having trouble focusing at school. At first I thought this is behavioral or a sign of immaturity but after researching SID I am not sure. He lacks focus at home to but not always... it's hit or miss.
He has had a lifelong problem with constipation- recently to the point of developing encopresis- basically leakage around an obstruction. I am concerned that this will cause social problems for him and after finally getting his dr. to okay a laxative and softener he is doing better. - Again this could be behavioral or there are some links to SID and constipation.
We have an appointment for July 12th to see a new pediatric neurologist. I want to know just a few basic things.
Does AJ have SID and if so what can be done about it?
How much of his issues are SID related, behavioral, and/or emotional and how do we address them?
Can he recommend a pediatrician who understands neurological disorders better than our family doctor does?
My fiance thinks I am making more out of this than I need to and that it will all work itself out. I just feel that if there is more that can be done to help AJ I want to pursue it. If it turns out he is just being difficult- a possibility but not a huge one given his temperment- I want to address these things from a behavioral stand point. If it turns out he need to learn coping skills or see a therapist I want to get a jump on that as well.
Hopefully everything checks out and I AM over-reacting. I just remember how everyone told me his speech issues would work themselves out and to just give it time. Thankfully I went with my gut and we caught the apraxia early. I hoping that if there is something going on we can help him deal with it as best as he can as soon as possible so that any negative effects on his education are minimal.
Friday, July 8, 2011
Wednesday, May 6, 2009
Lions and Tigers and Bears... Oh and don't forget the flying Monkeys.
So it has been quite a while since I have posted but much has happened in the last few months. In February we learned that the Child Development Center I manage would be closing at the end of April. This has effected AJ quite a bit but not too much until recently. I am out of a job as of this Friday. Yikes! (Lions AND Tigers)
EMU has released AJ from the Speech and Hearing Clinic's program. He has made so much progress that he is 95% intelligible and they feel he does not need services anymore. I understand that there are many children who are in situations like AJ was just a year and a half ago who need their expertise more than he does but it is a bit un-nerving to lose that safety net. I know that we can always go back if there is a resurgance of issues, and I am of course thrilled that he is doing so very well but it just seems too good to be true after all I've learned about apraxia. (Bears)
Of course just this week, as my center is closing, AJ is struggling with some serious disfluency. He is stammering and struggling to get his thoughts out more and more. He has also has had a few nightmares lately. The only one he could articulate was about a monkey with "four legs" looking at him. (Flying Monkeys?)
I am hoping that things calm down soon and we can get back into a routine before kindergarten begins this fall and things get crazy again.
On a hopeful note, AJ is starting T-ball. His first game is Saturday. I am a bit nervous about him experiencing team sports as it will be his first test with communicating with other children who are not familiar with him. We think he is easy to understand now but others may have more difficulty. It's hard to have an objective opinion when I've been one of the few who could understand what he trying to get across even before he coud speak. I have been speaking "AJ-ease" for a long time. I worry about teasing from peers but I think that every mom worries about this to some extent.
I am drained from the closing of the center and am stressed about finding work in this economy. I am trying to stay positive but it is a difficult thing to do. I'm 41 years old and have always managed to survive somehow so I know I will be okay. I just have to keep reminding myself of that.
EMU has released AJ from the Speech and Hearing Clinic's program. He has made so much progress that he is 95% intelligible and they feel he does not need services anymore. I understand that there are many children who are in situations like AJ was just a year and a half ago who need their expertise more than he does but it is a bit un-nerving to lose that safety net. I know that we can always go back if there is a resurgance of issues, and I am of course thrilled that he is doing so very well but it just seems too good to be true after all I've learned about apraxia. (Bears)
Of course just this week, as my center is closing, AJ is struggling with some serious disfluency. He is stammering and struggling to get his thoughts out more and more. He has also has had a few nightmares lately. The only one he could articulate was about a monkey with "four legs" looking at him. (Flying Monkeys?)
I am hoping that things calm down soon and we can get back into a routine before kindergarten begins this fall and things get crazy again.
On a hopeful note, AJ is starting T-ball. His first game is Saturday. I am a bit nervous about him experiencing team sports as it will be his first test with communicating with other children who are not familiar with him. We think he is easy to understand now but others may have more difficulty. It's hard to have an objective opinion when I've been one of the few who could understand what he trying to get across even before he coud speak. I have been speaking "AJ-ease" for a long time. I worry about teasing from peers but I think that every mom worries about this to some extent.
I am drained from the closing of the center and am stressed about finding work in this economy. I am trying to stay positive but it is a difficult thing to do. I'm 41 years old and have always managed to survive somehow so I know I will be okay. I just have to keep reminding myself of that.
Saturday, January 31, 2009
Reality vs. make believe
AJ is very into dramatic play. He loves dress up clothes and his workbench and kitchen. He comes to me regularly and says "Mommy, I tending ..." I have been pleased with this development but bit worried that with all his super hero play -the latest being the Hulk- (thanks Daddy for letting the boy watch PG13 movies-UGH) that e doesn't understand that doing pretend things like on TV for real can hurt. He has been much more aggressive in his play and borders on violent at times. I was VERY surprised and pleased when the following conversation took place last week:
AJ and I were driving to his grandma's before I had to be at work on a particularly bad day weather wise. I got a call explaining that one of the teachers at my center was going to be late as her car slid off the road into a ditch. Thankfully she wasn't hurt. I explained to AJ that Ms. Carie was waiting for a tow truck. He stated "Mater is a tow truck" refering to a charachter from the movie Cars. I replied" Yes he is. Maybe Mater will help Ms. Carie" To which my 4 year old replied with an exasperated tone. "Mommy, Mater is NOT in our Earf (Earth)" It took me a second to realize he was commenting on the fact that Mater is a fidtional charachter. I replied " you are right, Mommy is silly" AJ said "He's just in movies and books Mommy."
Once again schooled by a four year old. I am always amazed how much more he "gets it" than I realize. I ave to be more careful not to underestimate him. Even while he's ripping his shirt off and running around the house screaming "Hulk SMASH!"
AJ and I were driving to his grandma's before I had to be at work on a particularly bad day weather wise. I got a call explaining that one of the teachers at my center was going to be late as her car slid off the road into a ditch. Thankfully she wasn't hurt. I explained to AJ that Ms. Carie was waiting for a tow truck. He stated "Mater is a tow truck" refering to a charachter from the movie Cars. I replied" Yes he is. Maybe Mater will help Ms. Carie" To which my 4 year old replied with an exasperated tone. "Mommy, Mater is NOT in our Earf (Earth)" It took me a second to realize he was commenting on the fact that Mater is a fidtional charachter. I replied " you are right, Mommy is silly" AJ said "He's just in movies and books Mommy."
Once again schooled by a four year old. I am always amazed how much more he "gets it" than I realize. I ave to be more careful not to underestimate him. Even while he's ripping his shirt off and running around the house screaming "Hulk SMASH!"
Wednesday, January 14, 2009
I'm so over it.
Okay so I finally observe in AJ's class just before the holidays. Not so impressed. There are 11 four year old boys in the class a teacher, a parapro and a speech therapist (some of the time) Most of the children have attention and/or behavior issues. The majority of the day is spent working with the boys on following directions, sitting still, taking turns, etc. I saw a speech small group (Including AJ). The kids were doing a project that involved following directions (Color two ornaments blue) and initiating conversation, (please pass me the glue Jake) There was no work on specific sounds or words. There was no work on pacing or fluency. There were no mouth and tongue exercises.
I waited until after the break to call the speech therapist to see if AJ ever gets individual speech therapy and/or if they ever work on his speech needs. Basically I've been told the budget doesn;t allow for individual therapy and that they are working on other goals not in his IEP.
I'm done. If he is not getting any benefit from the program why is he being dragged between 3 houses and two schools to attend? WHy are five people and a transportaion department killing themselves to get him back and forth to a 2.5 hour program? I am pulling him form the program. I could fight them and insist that they provide what he needs but kindergarten is looming large this fall and I don't think the battle will be won by the time he is to start.
I am keeping him enrolled in EMU's speech clinic. They are helping him immensely. I will push for him to get speech therapy when he begins Kindergarten in the fall as well. I am at peace with this decision and know that he is going to succeesd with or without the districts help because he is so determined.
I waited until after the break to call the speech therapist to see if AJ ever gets individual speech therapy and/or if they ever work on his speech needs. Basically I've been told the budget doesn;t allow for individual therapy and that they are working on other goals not in his IEP.
I'm done. If he is not getting any benefit from the program why is he being dragged between 3 houses and two schools to attend? WHy are five people and a transportaion department killing themselves to get him back and forth to a 2.5 hour program? I am pulling him form the program. I could fight them and insist that they provide what he needs but kindergarten is looming large this fall and I don't think the battle will be won by the time he is to start.
I am keeping him enrolled in EMU's speech clinic. They are helping him immensely. I will push for him to get speech therapy when he begins Kindergarten in the fall as well. I am at peace with this decision and know that he is going to succeesd with or without the districts help because he is so determined.
Tuesday, December 16, 2008
The war wages on!
I realize that we are blessed. I know that AJ has made incredible progress through the support and hard work of many people. I get that there are so many families struggling with apraxia that don't have the access to the resources we do- people in rural communities or in other low-population places where SLP's may have had no experience with apraxic kids. I understand all of this and believe me I am very, very grateful.
I still feel extremely frustrated that the school district makes everything such a battle. All I want to do is spend the day (2.5 hours) observing my child in his calssroom. At the IEP his teachers had concerns about AJ's socialization and lack of interaction. This is not like my son. He won't talk to me about his day, he cries when it is time to go to his "new school" These reasons and the lack of any quality communication are giving me reason for concern.
The teachers would only let me observe for 30 minutes which is ridiculous. They told me it was policy. I asked for it in writing and was told it wasn't in writing. They didn't want other children upset. What if someone acts out? I reminded them of what I do for a living. I let them know that I have seen children act out and I don't believe that they only act out in front of observers.
I spoke to the director of the program. She talked over me while I tried to explain my concerns and basically yelled at me when I insisted that I be allowed to observe for the entire day. We agreed that I would observe for 1.5 hours and that if it wasn't disruptive I would stay longer.
Somehow getting this much pushback about my desire to observe does not leave me feeling confident that all is as it should be.
I am sure that AJ is feeling intimidated since there are children in his new school have a broader range of issues and behavior problems than in his old program. I am okay with this as long as he is getting what he needs from the new school. I just would like to be able to discuss these things with hima nd help him process what is going on in the room.
My biggest concern is that they do not communicate and don't know my child after months of working with him. If this is not the right placement for him I will pull him out and bring him to my center full-time. There are a lot of people working very hard to trasnport him back and forth to this half day program and it is such a challenge that there is no point doing it if he is not gaining anything.
I observe tomorrow. I know that the last program left me with high expectations but I feel that these kids deserve the best. Not some half-hearted, bare minimum attempt to address their issues so that the district can say that they are providing special-ed for preschoolers. We'll see. I'm trying to keep an open mind!
I still feel extremely frustrated that the school district makes everything such a battle. All I want to do is spend the day (2.5 hours) observing my child in his calssroom. At the IEP his teachers had concerns about AJ's socialization and lack of interaction. This is not like my son. He won't talk to me about his day, he cries when it is time to go to his "new school" These reasons and the lack of any quality communication are giving me reason for concern.
The teachers would only let me observe for 30 minutes which is ridiculous. They told me it was policy. I asked for it in writing and was told it wasn't in writing. They didn't want other children upset. What if someone acts out? I reminded them of what I do for a living. I let them know that I have seen children act out and I don't believe that they only act out in front of observers.
I spoke to the director of the program. She talked over me while I tried to explain my concerns and basically yelled at me when I insisted that I be allowed to observe for the entire day. We agreed that I would observe for 1.5 hours and that if it wasn't disruptive I would stay longer.
Somehow getting this much pushback about my desire to observe does not leave me feeling confident that all is as it should be.
I am sure that AJ is feeling intimidated since there are children in his new school have a broader range of issues and behavior problems than in his old program. I am okay with this as long as he is getting what he needs from the new school. I just would like to be able to discuss these things with hima nd help him process what is going on in the room.
My biggest concern is that they do not communicate and don't know my child after months of working with him. If this is not the right placement for him I will pull him out and bring him to my center full-time. There are a lot of people working very hard to trasnport him back and forth to this half day program and it is such a challenge that there is no point doing it if he is not gaining anything.
I observe tomorrow. I know that the last program left me with high expectations but I feel that these kids deserve the best. Not some half-hearted, bare minimum attempt to address their issues so that the district can say that they are providing special-ed for preschoolers. We'll see. I'm trying to keep an open mind!
Friday, November 14, 2008
Adorable AJ Moments.
Moment One:
AJs sister (16) is taking a child development class in high school that requires her to care for an electronic doll for a weekend. After two sleepless nights Katie expressed her frustration as the doll wouldn't stop crying. She said "I think this thing is programmed wrong- it's not hungry, tired or wet. It's crying as if I dropped it or didn't support its head or something and it won't stop!" AJ on hearing this ran to get his Cabbagew Patch doll (Juan Perry) He said" Look Sissy" held the doll about three inches from the floor and proceeded to drop it. "My baby not cwying!"
We laughed hysterically and the tension was much diffused.
Moment Two:
Again with "Sissy" AJ's sister talks very quickly and while riding in the car the other day was excited and speaking so fast we couldn't understand her. I interrupted to say "Take a breath and slow down" AJ says "Sissy" The puffs up his cheeks and blows the air out and says "Do dis"
Moment Three:
As reported by dad. AJ was doing a floor puzzle of a human skeleton. As he was working the puzzle he was naming the pieces "Hand Bone" "Yeg Bone" etc. He gets to the tail bone which is dead center below the pelvis and says (you may have guessed it) "Penis Bone"
Moment Four:
Our blended family with all the kids crazy schedules means that at dinner time we have between 3 and 6 people at the table on any given night. Most nights AJ sits next to me but on nights when there are only three of us I have him sit across from me. He always complains about this and I reply "Please sit across from me so I can see your beautiful eyes" Last night we were at the table and my boyfriends daughter was sitting across from AJ. AJ commented on everyones placement at the table and finished with "and ______ 'cross from me, I see her bootiful eyes" The kids didn't get it but my sweetie and I knew right where that came from and smiled all through dinner.
AJs sister (16) is taking a child development class in high school that requires her to care for an electronic doll for a weekend. After two sleepless nights Katie expressed her frustration as the doll wouldn't stop crying. She said "I think this thing is programmed wrong- it's not hungry, tired or wet. It's crying as if I dropped it or didn't support its head or something and it won't stop!" AJ on hearing this ran to get his Cabbagew Patch doll (Juan Perry) He said" Look Sissy" held the doll about three inches from the floor and proceeded to drop it. "My baby not cwying!"
We laughed hysterically and the tension was much diffused.
Moment Two:
Again with "Sissy" AJ's sister talks very quickly and while riding in the car the other day was excited and speaking so fast we couldn't understand her. I interrupted to say "Take a breath and slow down" AJ says "Sissy" The puffs up his cheeks and blows the air out and says "Do dis"
Moment Three:
As reported by dad. AJ was doing a floor puzzle of a human skeleton. As he was working the puzzle he was naming the pieces "Hand Bone" "Yeg Bone" etc. He gets to the tail bone which is dead center below the pelvis and says (you may have guessed it) "Penis Bone"
Moment Four:
Our blended family with all the kids crazy schedules means that at dinner time we have between 3 and 6 people at the table on any given night. Most nights AJ sits next to me but on nights when there are only three of us I have him sit across from me. He always complains about this and I reply "Please sit across from me so I can see your beautiful eyes" Last night we were at the table and my boyfriends daughter was sitting across from AJ. AJ commented on everyones placement at the table and finished with "and ______ 'cross from me, I see her bootiful eyes" The kids didn't get it but my sweetie and I knew right where that came from and smiled all through dinner.
And the Battle Continues!
I am getting beyond frustrated with the new school. I really don't feel that they are working with me at all. I am not kept up to date or informed about his progress at all. I contacted the school to set up a day when I could observe/help in the classroom. I suggested a date and the reply I recieved was that that date wasn't good how about Friday from 930-1000. I responded by noting that half an hour made no sense. The school day is only 2.5 hourd long and that I need a full view of AJs day so that I can understand why he is not interacting. All of the preceding conversations were back and forth with notes so I requested that AJs teacher call me.
So Ms. Lisa calls me at work. She explains that they only allow a half hour for observations as they are disruptive to the children. She then offers to let me observe on my originally requested day after another observer. I explain that 2 people in one day would seem more disruptive than one for the whole day. I remind her that I have been in the ECE field for over 20 years and have done tons of observations and know how to be unobtrusive. I explain that by the time AJ adjusts to my presence and behaves as he normally does in the room it will be time for me to leave. She states that she is sorry but it is policy. I get frustrated and ask her to fax me a copy of the policy. "Oh...it's not anything in writing. "
She then proceeds to tell me she is surprised at my concern re: AJ because he is doing so much better socially. I let her know that this is news to me because she does not give any real communication about how he is doing. ARRRRRRRGGGGGHHHHHH!
I'm talking to the program director next.
On the up side EMU's speech clinic is amazing. We are really working on getting AJ to lift his head and keep his hands away from his mouth when speaking. He likes to keep his chin down (low tone or shyness? I need to watch him at home and in settings where he is completely at ease to puzzle this one out.)
We are really working on pacing and also consonant blends. The pacing has been very beneficial! He is slowing down a lot in everyday conversation. He is also working on singing to help his pacing.
He has begun to write his name. Granted "A.J." is not very many letters but he does like to put his own spin on things. The J ends in a spiral rather than just a curve. This is a new development and I'm not sure where he picked it up but he shows great small motor control when writing.
All in all with the exception of the school he is great. I don't think it is harming him but I don't know that it is helping him either. If I can't get a beeter feel for this I may pull him out as there are a lot of people going through a lot of coordinating to enable him to be transported back and forth to the school. We'll see.
So Ms. Lisa calls me at work. She explains that they only allow a half hour for observations as they are disruptive to the children. She then offers to let me observe on my originally requested day after another observer. I explain that 2 people in one day would seem more disruptive than one for the whole day. I remind her that I have been in the ECE field for over 20 years and have done tons of observations and know how to be unobtrusive. I explain that by the time AJ adjusts to my presence and behaves as he normally does in the room it will be time for me to leave. She states that she is sorry but it is policy. I get frustrated and ask her to fax me a copy of the policy. "Oh...it's not anything in writing. "
She then proceeds to tell me she is surprised at my concern re: AJ because he is doing so much better socially. I let her know that this is news to me because she does not give any real communication about how he is doing. ARRRRRRRGGGGGHHHHHH!
I'm talking to the program director next.
On the up side EMU's speech clinic is amazing. We are really working on getting AJ to lift his head and keep his hands away from his mouth when speaking. He likes to keep his chin down (low tone or shyness? I need to watch him at home and in settings where he is completely at ease to puzzle this one out.)
We are really working on pacing and also consonant blends. The pacing has been very beneficial! He is slowing down a lot in everyday conversation. He is also working on singing to help his pacing.
He has begun to write his name. Granted "A.J." is not very many letters but he does like to put his own spin on things. The J ends in a spiral rather than just a curve. This is a new development and I'm not sure where he picked it up but he shows great small motor control when writing.
All in all with the exception of the school he is great. I don't think it is harming him but I don't know that it is helping him either. If I can't get a beeter feel for this I may pull him out as there are a lot of people going through a lot of coordinating to enable him to be transported back and forth to the school. We'll see.
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