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.
Friday, November 14, 2008
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.
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