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.
Friday, January 18, 2008
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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