So it's official. We received Edwin's official diagnosis from the neurologist today. We saw him back in '07, when Edwin was an infant and didn't have many measureable skills and was there dxed with transient dystonia. Now he is two and his low tone has not resolved and it impacts all of his developmental skills.
It was clear the moment the neurologist looked at Edwin that he has cerebral palsy. He was gentle in his explanation, but did straight out explain that CP is due to brain injury that occured at birth or closely thereafter (Edwin, Sr needed to hear this explantion and I was pleased he explained it in simplistic terms, as hurtful as it was to hear.) He doesn't believe it was from his grade I/II brain bleed, but rather hypoxia or low blood pressure or a combination of both either at birth or during his NICU stay. Given the fact that he had extremely low desats and needed to be bagged many times, it is obviously unclear exactly when the injury occured.
He didn't feel an MRI or CT scan would be helpful, as it is clear there is injury present and given his birth history we know why.
He said that complete hypotonic cerebral palsy is generally characterized by *more* developmental delay, which I wasn't aware of. He also said it will make it harder for him to walk given how low the tone in his trunk and legs are. He said he was impressed with how well he uses his hands, but that his hypotonia in his trunk and legs is quite pronounced. He said he can also see a lot of low tone in his face, and of course his mouth, evidenced by his drooling. He also does not believe Edwin will develop hypertonia. Although said it would actually be helpful if he gained tone in his legs to help with walking.
I asked about the possibility of seizures and he said it is possible, although not likely, but that if we see anything concerning that he would order an EEG.
So of course it was a difficult appointment, but one that I was prepared for. Edwin, Sr on the other hand was hit a little harder and was almost teary. Hearing your child has brain injury that will impact them physically and mentally is a huge blow. We mourn for the struggles Edwin has been through and will continue to face, but we are extremely proud and grateful for our amazing son.
We know the future is uncertain...Edwin is still not using verbal language, and seems to lose receptive language skills he once had (Edwin clap your hands, where's your nose, etc. are now ignored or not followed.) The neurologist didn't feel it was appropriate to make much of this, but of course it's something we are keeping our eyes on. Edwin has a lot of therapy and we do all we can to maximize his potential, all while keeping things fun.
I'm trying to stay strong, especially since I knew this was coming, but there was something final and jolting about officially hearing that your child has irreversible brain damage that will impact him forever. I only hope the world will see beyond Edwin's disAbilities, and see him as the amazing boy we love so much.
Friday, January 30, 2009
Wednesday, January 28, 2009
Some pictures
Edwin sees the neurologist Friday and I will post after that, along with some video of his improvements in walking with his walker and standing. In the mean time, here are some cute pictures with the grandparents!
Boxing
Snack with grandpa
Grammy's Birthday...crazy hair day for Serena
Saturday, January 24, 2009
Quick update
I have been soo bad about posting...especially pictures. Sorry. Things have been so busy lately. We are in the process of buying our first home. It's too annoying and long to write about now, but I've fallen in love with a bank owned and it's taking FOREVER to get the bank to give us an answer. Hopefully by this coming week.
Friday we will see the neurologist for Edwin. At officially 2 years old corrected for prematurity, his low tone has not disappeared, therefore pointing to something other than transient dystonia...nothing I was suprised about of course. We'll see if they change the dx..I'm pretty certain he will.
I signed the paper work for the public school to begin the transition process. Edwin will certainly qualify for special ed, and we are in the process of ordering his own equipment...a walker of his own, possibly a special chair for school (Riffon sp?). They are not sure if Serena will qualify for special ed, there will be a complete assessment on them both next week. She can remain in EI based on her paralyzed vocal cord, but we will have to wait for the public school's assessment before we now if she qualifies for Special Ed. As of the brief testing they did this past week she is not delayed. But I think she will still test delayed, especially her speech and some issues with balance...she still can't climb up of down steps, but we are working on it.
They have been very happy and healthy (knock on wood) and they seem to growing up before our eyes.
I guess we've been having so much fun we haven't had much time for blogging, but I will upload pictures soon.
And hopefully we will her about our house soon!!!!!!
Friday we will see the neurologist for Edwin. At officially 2 years old corrected for prematurity, his low tone has not disappeared, therefore pointing to something other than transient dystonia...nothing I was suprised about of course. We'll see if they change the dx..I'm pretty certain he will.
I signed the paper work for the public school to begin the transition process. Edwin will certainly qualify for special ed, and we are in the process of ordering his own equipment...a walker of his own, possibly a special chair for school (Riffon sp?). They are not sure if Serena will qualify for special ed, there will be a complete assessment on them both next week. She can remain in EI based on her paralyzed vocal cord, but we will have to wait for the public school's assessment before we now if she qualifies for Special Ed. As of the brief testing they did this past week she is not delayed. But I think she will still test delayed, especially her speech and some issues with balance...she still can't climb up of down steps, but we are working on it.
They have been very happy and healthy (knock on wood) and they seem to growing up before our eyes.
I guess we've been having so much fun we haven't had much time for blogging, but I will upload pictures soon.
And hopefully we will her about our house soon!!!!!!
Thursday, January 15, 2009
SpedPAC
A phone call about trying to find child care for S&E sparked the interest of my coworker who told me she received an email for a meeting for parents of children with special needs. She gets all the local emails like these because of her role as a case worker.
I took the email and decided I'd attend.
The meeting was last night and was JUST what I needed. A room full of concerned parents who are clearly their children's best advocates...braving the freezing weather at 6:30 pm, coming out for a chance to speak with the Dir of Special Education in our city, to ask questions, general and specific, and attend a training on effective communication in an IEP meeting.
I asked a couple of questions, and as soon as the presentation concluded two moms rushed up to me. "Hi, we also have children with physical disabilities." All of a sudden I got choked up. It felt so good to have other moms who "got it" come over to me, share their stories, and "welcome" me into this group.
The name is Special Education Parents Advisory Committee, and it's a lifesaver. I was the only mom who has yet to have an IEP meeting, and they took me right under their wings. Two of the moms have children with CP, and they have the same neurologist as Edwin. Another mom has a son with Autism, who, after 11 years just got a diagnosis of a rare genetic disorder that day. Another mom has a son with Downs Syndrome, and yet another has an adult daughter who has an intellectual disability.
After we chatted, we went to what they call their "therapy" session. We went out to a restuarant, had appetizers, and wine or beer depending on your preference. We shared experiences, they gave me great advice, and we exchanged information.
Prior to this, I have only one "real life" friend who has a child with special needs, and her advice and support has been priceless...she has helped me in so many ways. From getting hippotherapy for Edwin, to referring me to the augmentative speech clinic for Edwin, to sending me what a vision statement SHOULD look like. The only difference is this friend lives in another town, and meeting the moms from SpedPAC provided me with information about which schools in my city were good, which ones to avoid, and specifics about teachers and administrators in our area. I hope my friend will join us for meetings and "therapy" as well (email to come Ms Lady.)
In part because I am a young mom, there are very few people in my peer group who have children, and those from high school who do, well, let's just say we don't have much in common considering they still go out to the clubs every weekend...
I have a friend from college who has twins and she has been a huge support as well, and we NEVER see each other and this has to change!!! So in being a young mom, I feel disconnected from my peers, and don't feel I have people to talk to. Add in that I have medically fragile children with special needs, and well now I really feel isolated. Until I realized there are other moms out there like me! In fact, one graduated from the same college I did...granted it was 20 plus years before me, but still! They were so nice, so welcoming, and again, they so "got it."
I am so excited to really get involved with the Special Ed Parent Advisory Committee. We meet every month, and I look forward to all I have to learn from these moms who have been through special education...the ups and the downs. It also gives me direct access to the Dir of Special Ed from our city, who was so willing to answer questions, and seemed to know many of the other parents children specifically. In fact, the mom who is a fellow HC alum, personally called him when she was called on a Fri afternnon to be informed that as of Mon there would only be a nurse part time. This would be unacceptable, as her son has a severe seizure disorder. He personally took care of the situation and everything was all set. (Here is where I was informed that I need to have it on the twin's IEP that there is a full time nurse at the school every day given their chronic lung disease and Serena's reactive airway disease.)
Anyway, I already feel more prepared for school, and will learn even more through the annual conference in March (presented by the Federation of Children with Special Needs) and the continued meetings with SpedPAC.
So, if you are a parent of a child with special needs, and you feel somewhat isolated, I'd highly recommend getting involved with your local Parent Advisory Committee.
It gave me so much hope for S&E's futures, listening to these amazing moms tell their stories. Thanks ladies...
I took the email and decided I'd attend.
The meeting was last night and was JUST what I needed. A room full of concerned parents who are clearly their children's best advocates...braving the freezing weather at 6:30 pm, coming out for a chance to speak with the Dir of Special Education in our city, to ask questions, general and specific, and attend a training on effective communication in an IEP meeting.
I asked a couple of questions, and as soon as the presentation concluded two moms rushed up to me. "Hi, we also have children with physical disabilities." All of a sudden I got choked up. It felt so good to have other moms who "got it" come over to me, share their stories, and "welcome" me into this group.
The name is Special Education Parents Advisory Committee, and it's a lifesaver. I was the only mom who has yet to have an IEP meeting, and they took me right under their wings. Two of the moms have children with CP, and they have the same neurologist as Edwin. Another mom has a son with Autism, who, after 11 years just got a diagnosis of a rare genetic disorder that day. Another mom has a son with Downs Syndrome, and yet another has an adult daughter who has an intellectual disability.
After we chatted, we went to what they call their "therapy" session. We went out to a restuarant, had appetizers, and wine or beer depending on your preference. We shared experiences, they gave me great advice, and we exchanged information.
Prior to this, I have only one "real life" friend who has a child with special needs, and her advice and support has been priceless...she has helped me in so many ways. From getting hippotherapy for Edwin, to referring me to the augmentative speech clinic for Edwin, to sending me what a vision statement SHOULD look like. The only difference is this friend lives in another town, and meeting the moms from SpedPAC provided me with information about which schools in my city were good, which ones to avoid, and specifics about teachers and administrators in our area. I hope my friend will join us for meetings and "therapy" as well (email to come Ms Lady.)
In part because I am a young mom, there are very few people in my peer group who have children, and those from high school who do, well, let's just say we don't have much in common considering they still go out to the clubs every weekend...
I have a friend from college who has twins and she has been a huge support as well, and we NEVER see each other and this has to change!!! So in being a young mom, I feel disconnected from my peers, and don't feel I have people to talk to. Add in that I have medically fragile children with special needs, and well now I really feel isolated. Until I realized there are other moms out there like me! In fact, one graduated from the same college I did...granted it was 20 plus years before me, but still! They were so nice, so welcoming, and again, they so "got it."
I am so excited to really get involved with the Special Ed Parent Advisory Committee. We meet every month, and I look forward to all I have to learn from these moms who have been through special education...the ups and the downs. It also gives me direct access to the Dir of Special Ed from our city, who was so willing to answer questions, and seemed to know many of the other parents children specifically. In fact, the mom who is a fellow HC alum, personally called him when she was called on a Fri afternnon to be informed that as of Mon there would only be a nurse part time. This would be unacceptable, as her son has a severe seizure disorder. He personally took care of the situation and everything was all set. (Here is where I was informed that I need to have it on the twin's IEP that there is a full time nurse at the school every day given their chronic lung disease and Serena's reactive airway disease.)
Anyway, I already feel more prepared for school, and will learn even more through the annual conference in March (presented by the Federation of Children with Special Needs) and the continued meetings with SpedPAC.
So, if you are a parent of a child with special needs, and you feel somewhat isolated, I'd highly recommend getting involved with your local Parent Advisory Committee.
It gave me so much hope for S&E's futures, listening to these amazing moms tell their stories. Thanks ladies...
Saturday, January 10, 2009
Serena pooped in the potty!!!
Ok, ok, so it was a fluke, but she did!
I took the potty out for the FIRST time tonight, and told her she was going to be like Mommy and Daddy and go poop and pee on the potty (we have ZERO privacy and they have been in the bathroom while we use it zillions of times and she is certainly aware of the "big" potty.)
So I took off her diaper and told her to sit. She whined and didn't seem to think it was a good idea. Then Daddy took her into the bathroom with her potty and he sat on the "big potty" (TMI sorry). I guess she sat on it and pooped, because when I came in to check less than a minute later, she was still kind of whining, but yet still sitting, and I picked her up and in her potty was...well you get it. I almost took a picture but I thought that might be a little weird. Edwin and I clapped and congratulated her and she looked really confused. She even said "EEEWWW" which she does when I change her diaper now because I guess I say that a lot...lol. I tried to get her to sit again because I knew she wasn't done (TMI to explain how I knew), but she didn't want to and I didn't force the issue. She then proceded to poop in her diaper without saying anything, so she isn't too bothered by going in the diaper yet, although I do think she could "get" the concept of the potty and will continue to try a couple of times a day. I'd LOVE to have her potty trained before daycare, but that may be an unrealistic goal...we'll see though.
Anyway, what a huge milestone for my big girl!!!
I took the potty out for the FIRST time tonight, and told her she was going to be like Mommy and Daddy and go poop and pee on the potty (we have ZERO privacy and they have been in the bathroom while we use it zillions of times and she is certainly aware of the "big" potty.)
So I took off her diaper and told her to sit. She whined and didn't seem to think it was a good idea. Then Daddy took her into the bathroom with her potty and he sat on the "big potty" (TMI sorry). I guess she sat on it and pooped, because when I came in to check less than a minute later, she was still kind of whining, but yet still sitting, and I picked her up and in her potty was...well you get it. I almost took a picture but I thought that might be a little weird. Edwin and I clapped and congratulated her and she looked really confused. She even said "EEEWWW" which she does when I change her diaper now because I guess I say that a lot...lol. I tried to get her to sit again because I knew she wasn't done (TMI to explain how I knew), but she didn't want to and I didn't force the issue. She then proceded to poop in her diaper without saying anything, so she isn't too bothered by going in the diaper yet, although I do think she could "get" the concept of the potty and will continue to try a couple of times a day. I'd LOVE to have her potty trained before daycare, but that may be an unrealistic goal...we'll see though.
Anyway, what a huge milestone for my big girl!!!
Friday, January 9, 2009
Realities of child care for children with special needs
I think I have found an answer to our child care concern should we lose nursing in March and yes it does include daycare.
At first I really had no idea how day care would be an option for reasons listed in a previous post on the topic; however, I realized that socialization may actually help Serena and Edwin, and while they are being cared for in-home there is a "limit" to their view of the world during the week, and this makes me concerned. They have each other which is a huge bonus, but I think they really need the socialization, although I am very afraid of the germs.
But I look at it like this. They will be beginning preschool in September. If they aren't exposed to things now, just imagine how terrible their first year of school will be. I think it is time to attempt daycare (once we officially lose nursing hours, which is a whole other issue because they still need O2 when sick while sleeping and this will not be an option in daycare so....)
But, should they come off O2, we would be able to apply for a sliding scale to pay for daycare for them both. Then, when they turn 2 years 9 months (June) they can go to the child care center located at one of the sites I work at (I work for an agency, but onsite at two youth centers.) I know the employees well, would be in the building daily, and they are opened until 6pm, the time I leave work anyway!
The other bonus is once they start special ed preschool in September, the school system will provide transportation to school and then to the daycare center. Since they will only be in school 2 1/2 hours a day, they will then be bused to the day care center, where I will be, and they can stay there until 6.
Edwin certainly has many needs, and I thought for sure he would not be able to attend daycare. However, thanks to the Americans with Disabilities Act of 1990, Edwin can't be denied child care because of his special needs. In fact, the day care center is obligated by law to make reasonable accomidations for him and to apply for financial assistance if need be to get him the support he needs. (Which would hopefully mean another employee or aide to work more one-on-one with him.)
There is an elevator they could use with him so he didn't have to be carried down the stairs. He doesn't have to be potty trained, and in fact staff work with the child as an individual so if potty training is something they need, they will help with that, as well as with speech, using a crayon, putting on socks/shoes, etc.
There are other children who are in special ed in this program, although none have nearly as many delays and needs as Edwin...in fact none have a physical limitation, but I think he would do ok, and I'm not too worried about Serena, in fact I think it would be really good for her developmentally.
EI could do therapy right there, and I could take my lunch break so I could attend, since I'd be right down the hall.
Should there be an issue with them being sick, upset, etc. I would be readily available.
All in all I am trying to see what Edwin and Serena CAN do and realize that although they may have special needs, this does not mean they can't have access to things that typically developing children have. I am entitled to work, and not live in poverty because my children have needs. Of course I expect excellent care for them, and they are entitled and protected by law to have just that. I am worried about the health aspect, but am hoping that by the spring/summer we will be safer. And again, they will be going to school in Sept anyway, and we can't keep them isolated forever.
I am excited at the idea of them getting into daycare, which has an educational component, filled with routine, and NO TV time(although I push for no tv with the nurses, it's on quite a bit when I come home, or when Edwin stops by home in between training). They will start doing crafts with their peers, singing songs, and learning in a fun, bright, enviornment.
There are some things I worry about with respect to the 2.9 program. They are still eating in a high chair, but could eat at a little table, especially Serena...Edwin might need a chair with a little support, but July is still 6 months away so we'll cross that bridge when we get to it.
I'll have plenty of opportunities to show the program staff how to put on his AFOs, help him in his walker, and they will be present during their therapies.
I feel really relieved about this option and am doing the paperwork for the sliding scale program first thing Monday because there is a waiting list!! I have nursing hours until March, so I am set until then at least.
As for actual preschool within the school system, I talked to our city's director of Special Ed today. He was sooo nice and answered all of my questions. In a couple of months he will get the referral from EI and come out to our home to meet our family and talk about S&E. Then at 2 years 11 months (August) they will have an evaluation to "test" them. We will then have a meeting and create an IEP. This will determine what type of learning enviornment they will be in and what their needs will be in school. They will be in the daycare program where I work and this will determine where they will go to school, (district), because they will have them close for transportation purposes, which is good because I work in this area and I'll be close to them during school hours.
It seems like time is flying by and it's unbelievable that they will be in a preschool program in June and real school in Sept!!!!
I am proud of the progress they are making and so excited to see where these new steps to socialization will take them!
At first I really had no idea how day care would be an option for reasons listed in a previous post on the topic; however, I realized that socialization may actually help Serena and Edwin, and while they are being cared for in-home there is a "limit" to their view of the world during the week, and this makes me concerned. They have each other which is a huge bonus, but I think they really need the socialization, although I am very afraid of the germs.
But I look at it like this. They will be beginning preschool in September. If they aren't exposed to things now, just imagine how terrible their first year of school will be. I think it is time to attempt daycare (once we officially lose nursing hours, which is a whole other issue because they still need O2 when sick while sleeping and this will not be an option in daycare so....)
But, should they come off O2, we would be able to apply for a sliding scale to pay for daycare for them both. Then, when they turn 2 years 9 months (June) they can go to the child care center located at one of the sites I work at (I work for an agency, but onsite at two youth centers.) I know the employees well, would be in the building daily, and they are opened until 6pm, the time I leave work anyway!
The other bonus is once they start special ed preschool in September, the school system will provide transportation to school and then to the daycare center. Since they will only be in school 2 1/2 hours a day, they will then be bused to the day care center, where I will be, and they can stay there until 6.
Edwin certainly has many needs, and I thought for sure he would not be able to attend daycare. However, thanks to the Americans with Disabilities Act of 1990, Edwin can't be denied child care because of his special needs. In fact, the day care center is obligated by law to make reasonable accomidations for him and to apply for financial assistance if need be to get him the support he needs. (Which would hopefully mean another employee or aide to work more one-on-one with him.)
There is an elevator they could use with him so he didn't have to be carried down the stairs. He doesn't have to be potty trained, and in fact staff work with the child as an individual so if potty training is something they need, they will help with that, as well as with speech, using a crayon, putting on socks/shoes, etc.
There are other children who are in special ed in this program, although none have nearly as many delays and needs as Edwin...in fact none have a physical limitation, but I think he would do ok, and I'm not too worried about Serena, in fact I think it would be really good for her developmentally.
EI could do therapy right there, and I could take my lunch break so I could attend, since I'd be right down the hall.
Should there be an issue with them being sick, upset, etc. I would be readily available.
All in all I am trying to see what Edwin and Serena CAN do and realize that although they may have special needs, this does not mean they can't have access to things that typically developing children have. I am entitled to work, and not live in poverty because my children have needs. Of course I expect excellent care for them, and they are entitled and protected by law to have just that. I am worried about the health aspect, but am hoping that by the spring/summer we will be safer. And again, they will be going to school in Sept anyway, and we can't keep them isolated forever.
I am excited at the idea of them getting into daycare, which has an educational component, filled with routine, and NO TV time(although I push for no tv with the nurses, it's on quite a bit when I come home, or when Edwin stops by home in between training). They will start doing crafts with their peers, singing songs, and learning in a fun, bright, enviornment.
There are some things I worry about with respect to the 2.9 program. They are still eating in a high chair, but could eat at a little table, especially Serena...Edwin might need a chair with a little support, but July is still 6 months away so we'll cross that bridge when we get to it.
I'll have plenty of opportunities to show the program staff how to put on his AFOs, help him in his walker, and they will be present during their therapies.
I feel really relieved about this option and am doing the paperwork for the sliding scale program first thing Monday because there is a waiting list!! I have nursing hours until March, so I am set until then at least.
As for actual preschool within the school system, I talked to our city's director of Special Ed today. He was sooo nice and answered all of my questions. In a couple of months he will get the referral from EI and come out to our home to meet our family and talk about S&E. Then at 2 years 11 months (August) they will have an evaluation to "test" them. We will then have a meeting and create an IEP. This will determine what type of learning enviornment they will be in and what their needs will be in school. They will be in the daycare program where I work and this will determine where they will go to school, (district), because they will have them close for transportation purposes, which is good because I work in this area and I'll be close to them during school hours.
It seems like time is flying by and it's unbelievable that they will be in a preschool program in June and real school in Sept!!!!
I am proud of the progress they are making and so excited to see where these new steps to socialization will take them!
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