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!
Tuesday, December 16, 2008
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.
Thursday, October 16, 2008
Pediatric Neurologist
We saw the pediatric Neurologist yesterday. I was pleased that my personal assesment matched the specialists. The verbal apraxia seems to be our only major issue. AJ has a few other "soft signs" but they are minor and place him on the lower end of the normal range of development. While I knew in my heart that this was probably the case I also needed to hear it from a specialist.
More good news. His new school just held thier first IEP with me. For the most part it went very well. We have some issues to work out regarding the level of coomunication I expect from them. But AJ is doing well. When they tested him (and granted it was less extensive testing) They found him 80% intelligible. This is up from 40% back in January. The new SLP stated that if she hadn't read the initial IEP she wouldn't have inagined he was ever that bad. I am thrilled of course though she and the head of the program at EMU are both questioning the accuracy of the apraxia diagnosis. (Which the neurologist did confirm as apraxia) I don't care what it is because the treatment we have been following for apraxia is working. So I let them know we would be continuing the path that we have been on. Once his teacher gets used to the idea that I will hold her accountable and am not a parent who will not stand by and say "whatever you think is best" we'll be fine. The bar was set very high by his last school and they will have to work to meet the level I have come to expect but it is possible. And he and the other children deserve a full effort.
I think AJ has a crush on Erin- His therapist at the EMU clinic. He wants to go there all the time and is sad when it is not a "speech day" She's young and sweet and gives him one-on-one undivided attention. What's not to like? I love that she can keep him on task and make their work fun. This program has been a life-saver. I have no idea what we would have done without it.
Life keeps going on and on and I am grateful every day for the many blessings in our lives. We have eachother, enough to eat, good health, a beautiful home and a great support network of family and friends. There are so many with so much less than us. I want my children to recognize this fact and be cognizant of how fortunate they are.
More good news. His new school just held thier first IEP with me. For the most part it went very well. We have some issues to work out regarding the level of coomunication I expect from them. But AJ is doing well. When they tested him (and granted it was less extensive testing) They found him 80% intelligible. This is up from 40% back in January. The new SLP stated that if she hadn't read the initial IEP she wouldn't have inagined he was ever that bad. I am thrilled of course though she and the head of the program at EMU are both questioning the accuracy of the apraxia diagnosis. (Which the neurologist did confirm as apraxia) I don't care what it is because the treatment we have been following for apraxia is working. So I let them know we would be continuing the path that we have been on. Once his teacher gets used to the idea that I will hold her accountable and am not a parent who will not stand by and say "whatever you think is best" we'll be fine. The bar was set very high by his last school and they will have to work to meet the level I have come to expect but it is possible. And he and the other children deserve a full effort.
I think AJ has a crush on Erin- His therapist at the EMU clinic. He wants to go there all the time and is sad when it is not a "speech day" She's young and sweet and gives him one-on-one undivided attention. What's not to like? I love that she can keep him on task and make their work fun. This program has been a life-saver. I have no idea what we would have done without it.
Life keeps going on and on and I am grateful every day for the many blessings in our lives. We have eachother, enough to eat, good health, a beautiful home and a great support network of family and friends. There are so many with so much less than us. I want my children to recognize this fact and be cognizant of how fortunate they are.
Saturday, September 13, 2008
4Th Birthday
On Tuesday my sweet little guy will turn four. When I think back over this past year I realize just how far he has progressed in such a short time. My hopes for his future are so much more positive then when we began. I can't believe that my boy will be four. Where does the time go.
The official birthday wish list includes a Bob the Builder cake, Elefun Game and something called Roll Over Puppy. The standards of construction trucks and fire trucks stand.
AJ's finally got his speech sessions for the new semester at EMU. He'll be attending twice a week with a new grad student for his therapist. I am really glad that he is able to continue this one on one therapy. While his special education preschool is extremely beneficial with both social skills and speech I feel some of the more technical aspects have been addressed more successfully with one on one therapy.
His appointment with the pediatric neurologist is set for mid-October and should just confirm that we are dealing with Apraxia only but it will be good to be sure.
He seems to have adjusted to the move and all the new changes to his schedule. I am hoping we aren't just going through a honeymoon period and that this relative calm will continue.
The official birthday wish list includes a Bob the Builder cake, Elefun Game and something called Roll Over Puppy. The standards of construction trucks and fire trucks stand.
AJ's finally got his speech sessions for the new semester at EMU. He'll be attending twice a week with a new grad student for his therapist. I am really glad that he is able to continue this one on one therapy. While his special education preschool is extremely beneficial with both social skills and speech I feel some of the more technical aspects have been addressed more successfully with one on one therapy.
His appointment with the pediatric neurologist is set for mid-October and should just confirm that we are dealing with Apraxia only but it will be good to be sure.
He seems to have adjusted to the move and all the new changes to his schedule. I am hoping we aren't just going through a honeymoon period and that this relative calm will continue.
Friday, September 5, 2008
Saga of the Quarter Part 2
To continue; We had an x-ray Wed. and the coin Was in the intestines. He passed it later that day. It was, surprisingly ...... a dime! Even the Doctors were surprised. It looked like a quarter on the x-rays although admittedly the coin was on an angle in both films. So unless my son's body is now making change, we are done! Thank the lord for that.
Also thank Him for our new pediatric Neurologist. AJ has an appointment to see the Doctor on Wed. Oct. 15th at 8:30 am. I am very excited and looking forward to his opinions and input on our boys progress and prognosis. It will feel good to know what a specialist thinks and if we are missing anything or on the right track with him.
We went to an open house at the new special ed preschool AJ will begin attending next week. It looks really good and he didn't want to leave. I am working with them to get the bussing situation under control. They aren't sure if they will pick him up without a consistant schedule an AJ's needs to vary due to custody issues. I will be so happy when the details of both this and his speech therapy at EMU are all coordinated.
Things are coming together but September will be a crazy month!
Also thank Him for our new pediatric Neurologist. AJ has an appointment to see the Doctor on Wed. Oct. 15th at 8:30 am. I am very excited and looking forward to his opinions and input on our boys progress and prognosis. It will feel good to know what a specialist thinks and if we are missing anything or on the right track with him.
We went to an open house at the new special ed preschool AJ will begin attending next week. It looks really good and he didn't want to leave. I am working with them to get the bussing situation under control. They aren't sure if they will pick him up without a consistant schedule an AJ's needs to vary due to custody issues. I will be so happy when the details of both this and his speech therapy at EMU are all coordinated.
Things are coming together but September will be a crazy month!
Tuesday, September 2, 2008
The saga of the quarter! part one
Well on Thursday my adorable almost 4 year old son decided that swallowing a quarter seemed like a good plan. He was with Grandma and ran to her saying his throat hurt. She asked why and he said "I ate moneys" When asked what money he replied "the big one". And the merriment has ensued from there. AJ swallowed a few times and stated "I better now." We of course all met at the emergency room where my son high fived the Dr. , told him he had "monies in my tummy" and laughed when sternly informed he was NOT a piggy bank. He smiled for his xrays and flirted with Everyone! So much for my thought that perhaps a slightly traumatic experience might prevent further such adventures.
The xrays showed that the quarter was in fact in his stomach and we were told that if he didn't pass it in three days to call his doc. for a referral to a pediatric gastroenterologist. This is where we are today. It has been 4.5 days due to the holiday weekend- my son has always had an excellent sense of timing things for the worst possible time- and no quarter. I have a call in to the doc and am waiting on an answer. I don't know what I hope. I read on line that sometimes they make you wait 3 weeks before they give up and put them under and scope them. The concern is that the quarter may be too large to pass into the duoendum (opening to the intestines) This at a time when he is starting a new school and is at 5 different places each week. It seems a bit much to ask new teachers to save his stool to be examined for pocket change. He's so irregular and now prides himself on total bathroom independence that we live in fear that he'll go and flush before we can check. Yikes.
On the positive side, when the er doc heard me explaining that he has Apraxia he immediately referred us to a pediatric neurologist. I was so excited. while everything has been going well on the Apraxia front, it would be reassuring to have him examined by a neurologist and be secure in the knowledge that we are doing everything we should and that there are no other surprises lurking.
He has been stuttering a lot lately which initially concerned me greatly but after reading a great article on this on Apraxia_Kids.org I feel it is likely that he is just overloaded with new abilities and information and needs time to take it all in.
I hope all is well for everyone out there and please say a prayer for silver poop!
The xrays showed that the quarter was in fact in his stomach and we were told that if he didn't pass it in three days to call his doc. for a referral to a pediatric gastroenterologist. This is where we are today. It has been 4.5 days due to the holiday weekend- my son has always had an excellent sense of timing things for the worst possible time- and no quarter. I have a call in to the doc and am waiting on an answer. I don't know what I hope. I read on line that sometimes they make you wait 3 weeks before they give up and put them under and scope them. The concern is that the quarter may be too large to pass into the duoendum (opening to the intestines) This at a time when he is starting a new school and is at 5 different places each week. It seems a bit much to ask new teachers to save his stool to be examined for pocket change. He's so irregular and now prides himself on total bathroom independence that we live in fear that he'll go and flush before we can check. Yikes.
On the positive side, when the er doc heard me explaining that he has Apraxia he immediately referred us to a pediatric neurologist. I was so excited. while everything has been going well on the Apraxia front, it would be reassuring to have him examined by a neurologist and be secure in the knowledge that we are doing everything we should and that there are no other surprises lurking.
He has been stuttering a lot lately which initially concerned me greatly but after reading a great article on this on Apraxia_Kids.org I feel it is likely that he is just overloaded with new abilities and information and needs time to take it all in.
I hope all is well for everyone out there and please say a prayer for silver poop!
Saturday, July 26, 2008
Brilliant Boy
Wow is my boy smart! He wrote his name today. OK, OK he wronte J and then A and his J was backwards but he wrote it on his own and brought to me saying "I wrote my name!" He was soooo proud. He has been more and more interested in ABC's and numbers (though for some reason he calls numbers "marbles") lately.
Actually now that I think of it he calls mushrooms, marshmallows too. I wonder if this is an Apraxia thing or just a developmental issue. Hmmmm. I'll have to check with his SLP at his next session. It is a little different.
The new school district does have the program he needs. The director of the one in Livonia helped me connect with the correct people to get the ball rolling and He will be starting in September. The school is pretty far from our new place, it will mean a long bus ride but hopefully it will just be for this year and then he can start kindergarten.
I can't believe our luck in finding the right people at the right time. It is obvious to me that the Lord has a plan and I just need to trust in Him and know that in the end it will all work out.
Socially AJ has been blessed this summer. At preschool some of the older Summer Campers have been taking him under their wing and really encouraging him to talk and being patient while trying to understand him. I saw on the playground the other day that another child about AJ's age took the truck he was playing with leading to tears from AJ. Before I could get there to encourage him to use his words, three 10-12 year old boys were there, comforting him and helping him work through it. I stood and cried. It is so nice to see sensitive young people who are helping my little guys self-esteem. Young people get such a bad wrap and it has been my experience that they are generally good kids. I'm so pleased that AJ is willing to attempt communication with them. I have had so many worries for so long about his socialization and again, it all seems to be coming together. I need to just trust more.
While I am thrilled about my little guys progress I find myself in a sometimes awkward situation. I belong to several groups with other moms of special needs children. I'm so excited about AJ and how well he is doing and want to share this good news but I have several friends who are not seeing such progress in their children. Some have kids with multiple issues and others have children with more severe forms of Apraxia. I know they celebrate with me but I am sure it must be hard when they have such challenges in their own lives. I pray for all of them every day and hope they know that I am here for them if they need me. I try to imagine how I would feel if the situation is reversed and I hope that my sharing brings hope to them and not pain.
Actually now that I think of it he calls mushrooms, marshmallows too. I wonder if this is an Apraxia thing or just a developmental issue. Hmmmm. I'll have to check with his SLP at his next session. It is a little different.
The new school district does have the program he needs. The director of the one in Livonia helped me connect with the correct people to get the ball rolling and He will be starting in September. The school is pretty far from our new place, it will mean a long bus ride but hopefully it will just be for this year and then he can start kindergarten.
I can't believe our luck in finding the right people at the right time. It is obvious to me that the Lord has a plan and I just need to trust in Him and know that in the end it will all work out.
Socially AJ has been blessed this summer. At preschool some of the older Summer Campers have been taking him under their wing and really encouraging him to talk and being patient while trying to understand him. I saw on the playground the other day that another child about AJ's age took the truck he was playing with leading to tears from AJ. Before I could get there to encourage him to use his words, three 10-12 year old boys were there, comforting him and helping him work through it. I stood and cried. It is so nice to see sensitive young people who are helping my little guys self-esteem. Young people get such a bad wrap and it has been my experience that they are generally good kids. I'm so pleased that AJ is willing to attempt communication with them. I have had so many worries for so long about his socialization and again, it all seems to be coming together. I need to just trust more.
While I am thrilled about my little guys progress I find myself in a sometimes awkward situation. I belong to several groups with other moms of special needs children. I'm so excited about AJ and how well he is doing and want to share this good news but I have several friends who are not seeing such progress in their children. Some have kids with multiple issues and others have children with more severe forms of Apraxia. I know they celebrate with me but I am sure it must be hard when they have such challenges in their own lives. I pray for all of them every day and hope they know that I am here for them if they need me. I try to imagine how I would feel if the situation is reversed and I hope that my sharing brings hope to them and not pain.
Monday, July 14, 2008
Summer Roller Coaster Ride
Well I got the call that I dreaded. AJ couldn't be part of the EMU speech clinic because the waiting list was too long. This meant private speech therapy and the real likelihood that I wouldn't get the insurance company to pay for it. I had to change AJ's primary care physician as his pediatrician and I have gone around and around too many times and I am tired of fighting to get what he needs. Dr. Roth while very good at general childhood illnesses is old school regarding language and about to retire and is not interested in learning about apraxia.
So I changed his doctor and got the orders for speech therapy. I had scheduled an appointment at the hospital I work for for an intak and evaluation. I had printed about 100 pages off of Apraxia-kids.org and Wrightslaw.com to help me plan my battle with Aetna. I had started a log book with info on the intial coversations I had with Aetna and reworked my budget about 50 times to try to find the funding for all of this. I had girded myself for "The Big Battle"... and I got another call.
EMU had a cancellation and could fit AJ in if we could be there on Tuesdays and Thursdays from 930-1020am. I was crying so hard from relief and thanking God for this miracle that I almost couldn't verbalize our willingness to make the apointed times. I can't tell you how many instances in my life I have been blessed by people and events miraculously configuring to work things out. There are angels on this planet who appear at just the right times and I thank God for them daily.
AJ loves his one on one therapy with Jeanette. They are working on consonant blends. Yes, I said it, consonant blends. There is a theory that if you work on the hard things first the rest falls into place. My son can say spoon, spaghetti, snowman, sticker, skunk, snake, stop sign, slippers, and scarf clearly. It's unbelievable. Jeanette is a student at EMU and is observed in her sessions by her teachers and myself. This is such an amazing experience to see his interactions and be able to help follow through at home on what he is working on at the clinic. The teacher is amazed at how hard AJ is willing to work and how quickly he is catching on.
At this rate I am beginning to think that he may be ready for main stream kindergarten in the fall of 09. I am very excited because he can stay in both the special education ECP program in Canton and still continue the twice weekly individual apeech therapy at EMU during the school year.
EMU charges only $100.00/term. I can afford this even without insurance.
I am so thankful to all the people who have been helping AJ along his journey and so proud of the hard work he does daily to progress and improve. He has come so far and I truly have huge hopes and confidence that things will be okay now where once, at the beginning I had fear and doubts.
Some of the new things my sweet boy does can be a bit frustrating. He is doing the typical "WHY?" thing. Me: "Eat your Nuggets" AJ: "Why?" Me: "Because they are your lunch " AJ:"Why?" Me: "Because you asked for them" AJ:"Why?" Me: "UGHHHH!" I have to remind myself that 8 months ago I would have been thrilled for this interaction. He wants to extend conversations and he understands that by asking why he can do just that. He wants to talk! It just gets exhausting after about the 40th "Why?" of the day. Please note that I am NOT complaining just shocked at how much has changed so quickly.
Another new thing he does is label everything he see's. I have to respond so that he knows that I heard him and this is exhausting too but he is increasing vocabulary and so proud of his ability to identify objects and be understood. While I support this we are working on learning not to interrupt. I feel it is important for AJ to have good manners even though he has speech challenges. I don't want to excuse rudeness or behavior issues just because he is challenged in other ways. He is totally able to understand concepts like waiting a turn to talk. I'm a bit terrified of speech becoming an excuse for everything and will not allow this to happen.
So it's been a crazy bumpy ride this summer but what a rush! AJ is doing well but did have a slight set-back with Strep throat and Poison Ivy at the same time but is doing so well now. I pray that other familes and children dealing with Apraxia also have the blessings and successes we are finding in our lives.
So I changed his doctor and got the orders for speech therapy. I had scheduled an appointment at the hospital I work for for an intak and evaluation. I had printed about 100 pages off of Apraxia-kids.org and Wrightslaw.com to help me plan my battle with Aetna. I had started a log book with info on the intial coversations I had with Aetna and reworked my budget about 50 times to try to find the funding for all of this. I had girded myself for "The Big Battle"... and I got another call.
EMU had a cancellation and could fit AJ in if we could be there on Tuesdays and Thursdays from 930-1020am. I was crying so hard from relief and thanking God for this miracle that I almost couldn't verbalize our willingness to make the apointed times. I can't tell you how many instances in my life I have been blessed by people and events miraculously configuring to work things out. There are angels on this planet who appear at just the right times and I thank God for them daily.
AJ loves his one on one therapy with Jeanette. They are working on consonant blends. Yes, I said it, consonant blends. There is a theory that if you work on the hard things first the rest falls into place. My son can say spoon, spaghetti, snowman, sticker, skunk, snake, stop sign, slippers, and scarf clearly. It's unbelievable. Jeanette is a student at EMU and is observed in her sessions by her teachers and myself. This is such an amazing experience to see his interactions and be able to help follow through at home on what he is working on at the clinic. The teacher is amazed at how hard AJ is willing to work and how quickly he is catching on.
At this rate I am beginning to think that he may be ready for main stream kindergarten in the fall of 09. I am very excited because he can stay in both the special education ECP program in Canton and still continue the twice weekly individual apeech therapy at EMU during the school year.
EMU charges only $100.00/term. I can afford this even without insurance.
I am so thankful to all the people who have been helping AJ along his journey and so proud of the hard work he does daily to progress and improve. He has come so far and I truly have huge hopes and confidence that things will be okay now where once, at the beginning I had fear and doubts.
Some of the new things my sweet boy does can be a bit frustrating. He is doing the typical "WHY?" thing. Me: "Eat your Nuggets" AJ: "Why?" Me: "Because they are your lunch " AJ:"Why?" Me: "Because you asked for them" AJ:"Why?" Me: "UGHHHH!" I have to remind myself that 8 months ago I would have been thrilled for this interaction. He wants to extend conversations and he understands that by asking why he can do just that. He wants to talk! It just gets exhausting after about the 40th "Why?" of the day. Please note that I am NOT complaining just shocked at how much has changed so quickly.
Another new thing he does is label everything he see's. I have to respond so that he knows that I heard him and this is exhausting too but he is increasing vocabulary and so proud of his ability to identify objects and be understood. While I support this we are working on learning not to interrupt. I feel it is important for AJ to have good manners even though he has speech challenges. I don't want to excuse rudeness or behavior issues just because he is challenged in other ways. He is totally able to understand concepts like waiting a turn to talk. I'm a bit terrified of speech becoming an excuse for everything and will not allow this to happen.
So it's been a crazy bumpy ride this summer but what a rush! AJ is doing well but did have a slight set-back with Strep throat and Poison Ivy at the same time but is doing so well now. I pray that other familes and children dealing with Apraxia also have the blessings and successes we are finding in our lives.
Tuesday, April 22, 2008
Excellent report
Well AJ's progress report was very good. It took a while to understand the way the school system quantifies improvement but once I got it I was happy to realize that he is making good progress. AJ is on target and expected to meet all of his IEP goals on time.
The school had an ice cream social and AJ was thrilled that his Papa Mike and Grandma Cherie got to see his school. He loved showing off his locker and classroom and introducing them to his teachers. Everyone comments on what a great kid he is and of course my parents eat that up.
I had a good conversation with Carol and am very happy with the progress he is making in speech. She says that he makes her look good and we both have noticed him working very hard to ennunciate words and using the physical cues he's ben taught to help him remember how to move his lips and mouth. He can now pronounce his name clearly - no more concerns that if lost he can't say his name. I am very relieved by this. We have been working on it for a long time and he is quite proud of this ability. Carol feels that we are quickly getting past the initial apraxia issue and are now working more on phonological problems
My sister was in town for the first time in a few months and marvelled at how far he has come. Sometimes when you are with him daily you forget that huge strides have been made- the improvement can be so gradual. It is very exciting to know that he has gone from being a quiet little guy to singing and talking our ears off.
My big concern now is what happens for the summer and when we move to a different school district. I am working to get him into the program at Eastern Michigan University but am not sure if he's in yet. Canton schools do not offer the same program as the one he is in now. I am trying to learn if they will bus him to the Livonia schools. I will be working on this next.
All in all I cannot complain. My little guy is just amazing us all and I thank God for all the angels who have come into our lives to help AJ on his journey.
The school had an ice cream social and AJ was thrilled that his Papa Mike and Grandma Cherie got to see his school. He loved showing off his locker and classroom and introducing them to his teachers. Everyone comments on what a great kid he is and of course my parents eat that up.
I had a good conversation with Carol and am very happy with the progress he is making in speech. She says that he makes her look good and we both have noticed him working very hard to ennunciate words and using the physical cues he's ben taught to help him remember how to move his lips and mouth. He can now pronounce his name clearly - no more concerns that if lost he can't say his name. I am very relieved by this. We have been working on it for a long time and he is quite proud of this ability. Carol feels that we are quickly getting past the initial apraxia issue and are now working more on phonological problems
My sister was in town for the first time in a few months and marvelled at how far he has come. Sometimes when you are with him daily you forget that huge strides have been made- the improvement can be so gradual. It is very exciting to know that he has gone from being a quiet little guy to singing and talking our ears off.
My big concern now is what happens for the summer and when we move to a different school district. I am working to get him into the program at Eastern Michigan University but am not sure if he's in yet. Canton schools do not offer the same program as the one he is in now. I am trying to learn if they will bus him to the Livonia schools. I will be working on this next.
All in all I cannot complain. My little guy is just amazing us all and I thank God for all the angels who have come into our lives to help AJ on his journey.
Saturday, March 29, 2008
Update
Well so much has happened. Time has just gotten away from me. AJ is doing very well. He loves his new school though there was an adjustment phase. He had night terrors and bed-wetting. This has resolved and he is doing much better. I did take him off the fish oil. He had some behaior issues and when I took him off the oil he improved drastically. It's hard to tell if the two are related or it was just a coincidence but I'm not messing with anything now.
He is speaking much more than before and more people seem to be able to understand more of what he is saying. His mean length of utterance (the average number of words he says in a sentance seems to be getting larger and he has started talking to his friends at the child care center more. I have noticed him starting to stutter at times. Mostly when he is trying to say a vowel sound like "I". I am hoping this is temporary and will speak to Carol about it.
I think the most exciting thing is that he is trying to communicate and seems so much less frustrated. He seems much happier than he has in the past and I am so glad that he is settling into a routine.
I should be getting his first progress report from his teachers on Monday. I communicate with them weekly but this is the official report required by his IEP. I will share the results once I have had time to look them over.
As a side note, I am in a much better place. I realized that I was suffering from depression again and went back on anti-depressants. Things don't seem quite so overwhelming anymore. I am able to function and stay focused on the important things.
He is speaking much more than before and more people seem to be able to understand more of what he is saying. His mean length of utterance (the average number of words he says in a sentance seems to be getting larger and he has started talking to his friends at the child care center more. I have noticed him starting to stutter at times. Mostly when he is trying to say a vowel sound like "I". I am hoping this is temporary and will speak to Carol about it.
I think the most exciting thing is that he is trying to communicate and seems so much less frustrated. He seems much happier than he has in the past and I am so glad that he is settling into a routine.
I should be getting his first progress report from his teachers on Monday. I communicate with them weekly but this is the official report required by his IEP. I will share the results once I have had time to look them over.
As a side note, I am in a much better place. I realized that I was suffering from depression again and went back on anti-depressants. Things don't seem quite so overwhelming anymore. I am able to function and stay focused on the important things.
Friday, January 18, 2008
Week o#1 at Perrinville ECP
Well our first week was a busy one but it was very good. I spoke to Carol, AJ's speech therapist, on Tuesday and met with her today. She sent home some handouts about visual cues for short vowel sounds and she taught me the Beckman Method , (facial massage to stimulate the muscles in AJ's lips, gums and mouth.) She has been very helpful and seems excited to be working with him. We are currently working on v/c (vowel /consonant) words like in, out, up, arm, ouch, oat, etc. AJ is doing very well but he is having some problems with arm. Instead of making an "ah" sound, his comes out "aw" We have lots to work on but it seems like there is a good, progressive plan and he is interested and willing at therapy times.
Behavior-wise he has changed. I don't know if it is an adjustment to the new routine, excitement about more people who can mostly understand him, or some strange side efffect to the fish oil we've been supplementing his diet with, but he is a much more wild child. I hate to use the term hyper but it is the one that best describes his behavior. He is rolling around on the floor and rough housing and sassing and just wild! I hope that this "phase?" will pass soon and I'll have my sweet boy back. I just read a post on apraxia-kids about a child who seems more hyper after starting fish oil but I don't know if it really is the cause in our case. He is attempting to speak more and trying new words. I don't understand what he is saying sometimes and while it is frustrating it is also exciting because he used to stick with words he knew I understood. We frequently repeated "safe" conversations- some of them routinely. I think it is because he wants to reassure himself that someone understands what he is trying to say. Today in the car however he was going on and on about something and I had no idea what it was. I pretended to understand at the end so as not to frustrate him but - no clue.
I am excited and hopeful. It is easier to believe that things will improve when his teacher and speech therapist say they feel strongly that he will do well. I am grateful to them for their understanding and supprt.
I attended a PTA meeting at Perrinvile Thursday night. There seem to be a lot of parents who support the school and work to make sure that their kids get what they need. The school has a great lending library with several books about apraxia that I hope to borrow very soon. I lent "The Late Talker" to Carol and she is reading it now.
I have to say that my ex-husband's mother and stepfather have been so helpful and supportive. They are learning the visual cues and prompts and are willing to learn the massage techniques as well. They also have been transporting him to and from school much of the time so that he can attend while I am at work. I thank God for them daily and know that this could never work if not for them.
I am more hopeful than ever that AJ will succeed in beating apraxia. With such a great team of devoted people behind him I know he can do it. He seems eager to communicate more. I'm sure someday I'll look back and find it hard to remember when he was quieter.
As a side note; AJ will begin taking the bus next week. He is so excited about it he could burst! I hope he likes it as much as he thinks he will. The harness contraption he has to wear to be safely secured in the bus provides serious restraint. I think his movements will be even more restricted than when in his car seat. We'll see.
I am pleased with our first week and looking forward to next week. I am glad, however, that it is the weekend. I am exhausted after so much activity and thinking and learning about so many new concepts. I think we all need a nice break.
Behavior-wise he has changed. I don't know if it is an adjustment to the new routine, excitement about more people who can mostly understand him, or some strange side efffect to the fish oil we've been supplementing his diet with, but he is a much more wild child. I hate to use the term hyper but it is the one that best describes his behavior. He is rolling around on the floor and rough housing and sassing and just wild! I hope that this "phase?" will pass soon and I'll have my sweet boy back. I just read a post on apraxia-kids about a child who seems more hyper after starting fish oil but I don't know if it really is the cause in our case. He is attempting to speak more and trying new words. I don't understand what he is saying sometimes and while it is frustrating it is also exciting because he used to stick with words he knew I understood. We frequently repeated "safe" conversations- some of them routinely. I think it is because he wants to reassure himself that someone understands what he is trying to say. Today in the car however he was going on and on about something and I had no idea what it was. I pretended to understand at the end so as not to frustrate him but - no clue.
I am excited and hopeful. It is easier to believe that things will improve when his teacher and speech therapist say they feel strongly that he will do well. I am grateful to them for their understanding and supprt.
I attended a PTA meeting at Perrinvile Thursday night. There seem to be a lot of parents who support the school and work to make sure that their kids get what they need. The school has a great lending library with several books about apraxia that I hope to borrow very soon. I lent "The Late Talker" to Carol and she is reading it now.
I have to say that my ex-husband's mother and stepfather have been so helpful and supportive. They are learning the visual cues and prompts and are willing to learn the massage techniques as well. They also have been transporting him to and from school much of the time so that he can attend while I am at work. I thank God for them daily and know that this could never work if not for them.
I am more hopeful than ever that AJ will succeed in beating apraxia. With such a great team of devoted people behind him I know he can do it. He seems eager to communicate more. I'm sure someday I'll look back and find it hard to remember when he was quieter.
As a side note; AJ will begin taking the bus next week. He is so excited about it he could burst! I hope he likes it as much as he thinks he will. The harness contraption he has to wear to be safely secured in the bus provides serious restraint. I think his movements will be even more restricted than when in his car seat. We'll see.
I am pleased with our first week and looking forward to next week. I am glad, however, that it is the weekend. I am exhausted after so much activity and thinking and learning about so many new concepts. I think we all need a nice break.
Wednesday, January 16, 2008
AJ's first day at Special education preschool
Wow what a day! AJ was very excited about his new school. When we arrived all he could think about were the school busses outside. He wants to ride that bus so badly. Once we got in and saw nana and papa (who came to learn the routine and wish him well) he jumped right in to the room and started sorting letter shapes. He didn't even look up when we said goodbye.
When I picked him up he was happy and excited and all about the bus again. (I'm working to get him on it)
The teacher sends home a detailed daily report that lets us know just what went on all day. AJ got to be the plant waterer. (Every child gets a job) She also sent a personal note about his first day and let us know what a great day he had.
That evening we met up with my new online friend Erin and her family. Erin's son is 2.5 yrs and they are in town for a week of intensive speech therapy at Nancy Kaufman's clinic. It was great to meet them and see the boys playing so nicely together. It was wonderful to share stories and resources and have someone to connect with that understands what I am going through. Erin has been a lifeline in the dark times and I pray that she, her family and her son find a resolution to his speech issues soon. I know that with her as an advocate her son will do just fine.
I am glad that things are starting to come together for AJ. It's good to have a plan and I hope that we can begin to see some progress within a few months. I know that each child is different and that Apraxia is fanous for slow progress in fits and starts. It would be so great to see any improvement-even a slight one- and know that things are working.
Until that time I'll be patient and work with AJ on the target sounds and exercises he is sent home with for "homework". Thank God we have finally started on the path towards resolution!
When I picked him up he was happy and excited and all about the bus again. (I'm working to get him on it)
The teacher sends home a detailed daily report that lets us know just what went on all day. AJ got to be the plant waterer. (Every child gets a job) She also sent a personal note about his first day and let us know what a great day he had.
That evening we met up with my new online friend Erin and her family. Erin's son is 2.5 yrs and they are in town for a week of intensive speech therapy at Nancy Kaufman's clinic. It was great to meet them and see the boys playing so nicely together. It was wonderful to share stories and resources and have someone to connect with that understands what I am going through. Erin has been a lifeline in the dark times and I pray that she, her family and her son find a resolution to his speech issues soon. I know that with her as an advocate her son will do just fine.
I am glad that things are starting to come together for AJ. It's good to have a plan and I hope that we can begin to see some progress within a few months. I know that each child is different and that Apraxia is fanous for slow progress in fits and starts. It would be so great to see any improvement-even a slight one- and know that things are working.
Until that time I'll be patient and work with AJ on the target sounds and exercises he is sent home with for "homework". Thank God we have finally started on the path towards resolution!
IEP blues!
We had AJ's first IEP on Friday the 11th. I was rather dissappointed about some things and excited about others. It was hard for me to hear that AJ would not be getting as much one on one speech therapy as I had hoped/expected. I realize that this is a preschool program and that much is done throughout the day but everything I have read and researched tells me that he needs 3-5 individual sessions each week. It is not even guaranteed that he gets one the way the IEP is written. I want to believe the speech therapist and the teachers that he will get more than one and that he will progress but I am worried. I let them know that if I did not feel he was making adequate progress I will be demanding another IEP. I also informed them that he may need extended school year services which they don't feel he warrants but I know he will need. If I cannot get him into another program I wil be requiring it from them.
It is a delicate balance advocating for your child and still preserving positive relationships with the people who are helping him. I hope that they were honest when they stated that they realize I need to be an advocate for my son.
I brought up some sensory integration concerns I had and they will look into those if they see any evidence of them. Perhaps I am borrowing trouble but the more I read the more I think I this could be a concern.
On the positive, I feel like I have a good relationship with his teacher and his speech therapist and that they will communicate with me frequently and listen to my concerns. Carol his speech therapist is the same person who evaluated him and I feel like she has a pretty full picture of my son. She also asked about fish oil which we had begun using 2 days prior to the IEP. Debra his teacher is very straightforward which I appreciate. She has an excellent routine in her room and two parapros to help. AJ should be a breeze for them. His development is pretty typical in other areas and he is a very good listener.
I signed the IEP but let them know I will ask for another if I don't think things are working well. I am going to trust them for now. Just as I ask the parents of the children in my center to trust myself and my teachers. It is hard for me to hand over the resposibilities of his education to another as I have had so much control in the past but I need to give them a chance to try it their way for now. I would love to have their way work! Time will tell.
It is a delicate balance advocating for your child and still preserving positive relationships with the people who are helping him. I hope that they were honest when they stated that they realize I need to be an advocate for my son.
I brought up some sensory integration concerns I had and they will look into those if they see any evidence of them. Perhaps I am borrowing trouble but the more I read the more I think I this could be a concern.
On the positive, I feel like I have a good relationship with his teacher and his speech therapist and that they will communicate with me frequently and listen to my concerns. Carol his speech therapist is the same person who evaluated him and I feel like she has a pretty full picture of my son. She also asked about fish oil which we had begun using 2 days prior to the IEP. Debra his teacher is very straightforward which I appreciate. She has an excellent routine in her room and two parapros to help. AJ should be a breeze for them. His development is pretty typical in other areas and he is a very good listener.
I signed the IEP but let them know I will ask for another if I don't think things are working well. I am going to trust them for now. Just as I ask the parents of the children in my center to trust myself and my teachers. It is hard for me to hand over the resposibilities of his education to another as I have had so much control in the past but I need to give them a chance to try it their way for now. I would love to have their way work! Time will tell.
Monday, January 7, 2008
Great video!
I found a great video that gives me so much hope. It was shown at the last CASANA (Childhood Apraxia of Speech Association of North America) national apraxia conference and was made by a young woman who had apraxia that is now resolved. I am adding a link to the video under the resources section. Hearing and seeing these young people who have been living with apraxia was amazing and helped to to envision a future for my sweet AJ that isn't so bleak. It is something I will view over and over again when I am feeling down or hopeless.
It has been a better afternoon and I am feeling stronger and more ready to face the IEP on Friday. I am thankful to all the friends and family who have been so wonderfully supportive during the past few days as I have been overwhelmed with emotion. If you are going through this yourself, sooner or later when the reality sets in please be sure to lean on those people close to you. I am learning that a person is only as strong as their support network.
It has been a better afternoon and I am feeling stronger and more ready to face the IEP on Friday. I am thankful to all the friends and family who have been so wonderfully supportive during the past few days as I have been overwhelmed with emotion. If you are going through this yourself, sooner or later when the reality sets in please be sure to lean on those people close to you. I am learning that a person is only as strong as their support network.
Feeling Down
I'm having a harder time lately. I really am grieving. Not for the loss of the concept of AJ as a perfect child... ALL children are perfect. I truly believe that and accept that each child is special and made just as God planned. I am grieving for the loss of the life I had hoped for for my son. I know that he will still have a great life and that he will overcome the obstacles apraxia puts in his way. I am just sad that it will be so much harder for him. He is so happy-go-lucky at this point. I worry that as he gets older and people expect more from him and his speech that he will have social problems and it will efect his self-confidence.
I have been observing his interactions with the other children in his preschool. (Not the special education preschool that he will start next week but the one he has been attending all along) I am noticing that he plays by himself the majority of the time and when he does play with peers he does not speak to them. He just watches them as he builds or plays doctor or house or with the trains. He'll smile and laugh and engage when he can but he doesn't even attempt words unless someone takes something from him.
This saddens me because at home with his sister and I he speaks all the time. He speaks with his cousins and with my boyfriends children very comfortably. These kids are very patient with him and know he has challenges speaking. I assumed he speaks with his peers at school but it appears he does not. This makes me think that he is aware of his differences and wants to hide them.
He was chosen as leader at school the other day. The leader gets to choose the book and song and turn the lights on and off for naptime. He also is supposed to call his friends names to dismiss them from circle time to go make choices during choice time. AJ just pointed to the children. He didn't/couldn't?/wouldn't? say their names.
AJ is very tall for his age. His dad is 6'3" so I guess it shouldn't be a surprise. AJ is in the 95 percentile for height. Because of this while he is only 3 he is the size of many 4-5 year olds. This causes many people to react when they hear him speak. Most are kind but visibly surprised. Some make rude comments about how he's too old for baby talk. I have been able to shield him from this for the most part but it is getting to be more of a challenge as he is more aware of other people's opinions.
I have people who point out to me that children are teased for a variety of reasons. If he wasn't being picked on for speech he would most likely be picked on for something else. I know this to be true. My 15 yr. old daughter was teased because her ears are small of all things. The difference is that she could respond to the taunting. She was also able to tell me about it. I fear that AJ will be trapped in a place where he can't express his feelings about teasing.
I know that I am "borrowing trouble". He is a happy well-adjusted boy for the most part and he doesn't seem too phased by all of this apart from his usual frustration when I cannot understand him. Fortunately that is not too frequent an experience.
I can only try to be there for him and help him express his feelings the best he can. I'll have to take things one day at a time. Who am I kidding... it's more like one syllable at a time. We'll make it. I just need to get through this grief so that we can start helping him. Hopefully once the IEP is over and I have a specific plan to work with it will help me.
I have been observing his interactions with the other children in his preschool. (Not the special education preschool that he will start next week but the one he has been attending all along) I am noticing that he plays by himself the majority of the time and when he does play with peers he does not speak to them. He just watches them as he builds or plays doctor or house or with the trains. He'll smile and laugh and engage when he can but he doesn't even attempt words unless someone takes something from him.
This saddens me because at home with his sister and I he speaks all the time. He speaks with his cousins and with my boyfriends children very comfortably. These kids are very patient with him and know he has challenges speaking. I assumed he speaks with his peers at school but it appears he does not. This makes me think that he is aware of his differences and wants to hide them.
He was chosen as leader at school the other day. The leader gets to choose the book and song and turn the lights on and off for naptime. He also is supposed to call his friends names to dismiss them from circle time to go make choices during choice time. AJ just pointed to the children. He didn't/couldn't?/wouldn't? say their names.
AJ is very tall for his age. His dad is 6'3" so I guess it shouldn't be a surprise. AJ is in the 95 percentile for height. Because of this while he is only 3 he is the size of many 4-5 year olds. This causes many people to react when they hear him speak. Most are kind but visibly surprised. Some make rude comments about how he's too old for baby talk. I have been able to shield him from this for the most part but it is getting to be more of a challenge as he is more aware of other people's opinions.
I have people who point out to me that children are teased for a variety of reasons. If he wasn't being picked on for speech he would most likely be picked on for something else. I know this to be true. My 15 yr. old daughter was teased because her ears are small of all things. The difference is that she could respond to the taunting. She was also able to tell me about it. I fear that AJ will be trapped in a place where he can't express his feelings about teasing.
I know that I am "borrowing trouble". He is a happy well-adjusted boy for the most part and he doesn't seem too phased by all of this apart from his usual frustration when I cannot understand him. Fortunately that is not too frequent an experience.
I can only try to be there for him and help him express his feelings the best he can. I'll have to take things one day at a time. Who am I kidding... it's more like one syllable at a time. We'll make it. I just need to get through this grief so that we can start helping him. Hopefully once the IEP is over and I have a specific plan to work with it will help me.
Friday, January 4, 2008
AJ's Strengths
I have been thinking today of the many strengths my little guy has. He is amazing with spatial relations. He can do a 25 piece puzzle in record time even if her has never done it before. He configures his wooden train tracks in amazing patterns with no assistance from me.
His small motor skills are fabulous. He can cut with scissors, draw faces, and build with blocks to dizzying heights. He can ut on his own mittens and almost dresshimself completey (darn Zippers and shoelaces)
His large motor is great. He climbs three flights of stairs every day to get to our apartment. He can throw a ball and hit you between the eyes. Catching is a bit shaky but hey, we're working on it. He can jump and climb like a little monkey.
He wants so desperately to talk. He speaks often but not intelligibly. He initiates coversation, and has a great sense of humor. He enjoys being silly and making others laugh and he cracks himself up all the time. He loves to hear stories and often "reads" them after I do.
He loves fire trucks, fire fighters, fire hydrants, fire extinguishers and anything dealing with firefighting. He also likes trains, contruction barrels and cones (plenty of those in Michigan) and helicopters. He is fascinated with Bowling, he plays with his toy bowling set daily and loves to go bumper bowling.
He loves Noggin and Sprout especially Thomas the Train, Fireman Sam, Piggly Winks and Little Bear. His favorite movies are Cars, Curious George, and Rattatouie. He loves songs but only sings sometimes. His favorites are ABC's, Twinkle Twinkle Little Star and Row, Row, Row Your Boat.
AJ loves his sister "Didi" (Katie) and his cat Paws. His best friends at school are "Doobie" (Drewby) and "Beady" (Brady) He loves his cousins and is very gentle with younger children especially Baby Eve.
We have an awesome bedtime routine which ends with us whispering a secret. I tell him "I love You AJ" he whispers back "I ub oo too!"
For all the challenges that are ahead, the frustrations and exhaustion and worry, I just need to remind myself what an amzing and wonderful little guy I have. How lucky we are that he is healthy and happy and bright. Perspective like this is what I need to have as I move forward through 08. Hopefully I will never lose site of these things.
His small motor skills are fabulous. He can cut with scissors, draw faces, and build with blocks to dizzying heights. He can ut on his own mittens and almost dresshimself completey (darn Zippers and shoelaces)
His large motor is great. He climbs three flights of stairs every day to get to our apartment. He can throw a ball and hit you between the eyes. Catching is a bit shaky but hey, we're working on it. He can jump and climb like a little monkey.
He wants so desperately to talk. He speaks often but not intelligibly. He initiates coversation, and has a great sense of humor. He enjoys being silly and making others laugh and he cracks himself up all the time. He loves to hear stories and often "reads" them after I do.
He loves fire trucks, fire fighters, fire hydrants, fire extinguishers and anything dealing with firefighting. He also likes trains, contruction barrels and cones (plenty of those in Michigan) and helicopters. He is fascinated with Bowling, he plays with his toy bowling set daily and loves to go bumper bowling.
He loves Noggin and Sprout especially Thomas the Train, Fireman Sam, Piggly Winks and Little Bear. His favorite movies are Cars, Curious George, and Rattatouie. He loves songs but only sings sometimes. His favorites are ABC's, Twinkle Twinkle Little Star and Row, Row, Row Your Boat.
AJ loves his sister "Didi" (Katie) and his cat Paws. His best friends at school are "Doobie" (Drewby) and "Beady" (Brady) He loves his cousins and is very gentle with younger children especially Baby Eve.
We have an awesome bedtime routine which ends with us whispering a secret. I tell him "I love You AJ" he whispers back "I ub oo too!"
For all the challenges that are ahead, the frustrations and exhaustion and worry, I just need to remind myself what an amzing and wonderful little guy I have. How lucky we are that he is healthy and happy and bright. Perspective like this is what I need to have as I move forward through 08. Hopefully I will never lose site of these things.
Wednesday, January 2, 2008
Resources
I have spent the last month and a half online researching apraxia and finding out everything I can to help my son. I highly reccommend apraxia-kids.org and Cherab as places to start. I hope to figure out how to put links onto this page so that it will be easy for readers to find their way to these sites.
I have begun to read "The Late Talker: What to Do if Your Child Isn't Talking Yet." by Marilyn Agin, Lisa Geng and Malcolm J. Nicholl. It is a great book but the chapter on early intervention was hard for me to read. I have a lot of guilt because I KNEW there was something wrong with my son's speech and allowed myself to "wait and see" when doctors and others encouraged me to do so. If I had fought harder I could have gotten AJ help a whole year sooner than he is getting it. This is an excellent book though and has a great deal of detailed information for parents.
I am focused now on the upcoming IEP and learning what I need to know in order to be prepared for it. I have found many great resources and will try to publish links to those as well.
One of the best thing I did was join groups on myspace and facebook deaking with apraxia. It has been very helpful to communicate with others who are going through the same roller coaster ride that we are.
I have already made some wonderful, supportive friends and hope that once I have a better idea of what I am doing I can be as helpful and supportive to them and others as they have been to me.
I long for the time when apraxia isn't the first and last thing I think about each day. When I am comfortable in my knowledge of it and don't feel like I still have so much to learn. Our lives need to have a sense of balance that is sorely lacking at this time. Hopefully once AJ begins at his new school and we are into a routine again this will begin to happen.
I am wishing everyone a happy and productive New Year.
I have begun to read "The Late Talker: What to Do if Your Child Isn't Talking Yet." by Marilyn Agin, Lisa Geng and Malcolm J. Nicholl. It is a great book but the chapter on early intervention was hard for me to read. I have a lot of guilt because I KNEW there was something wrong with my son's speech and allowed myself to "wait and see" when doctors and others encouraged me to do so. If I had fought harder I could have gotten AJ help a whole year sooner than he is getting it. This is an excellent book though and has a great deal of detailed information for parents.
I am focused now on the upcoming IEP and learning what I need to know in order to be prepared for it. I have found many great resources and will try to publish links to those as well.
One of the best thing I did was join groups on myspace and facebook deaking with apraxia. It has been very helpful to communicate with others who are going through the same roller coaster ride that we are.
I have already made some wonderful, supportive friends and hope that once I have a better idea of what I am doing I can be as helpful and supportive to them and others as they have been to me.
I long for the time when apraxia isn't the first and last thing I think about each day. When I am comfortable in my knowledge of it and don't feel like I still have so much to learn. Our lives need to have a sense of balance that is sorely lacking at this time. Hopefully once AJ begins at his new school and we are into a routine again this will begin to happen.
I am wishing everyone a happy and productive New Year.
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