The Clifford the Big Red Dog game on the Leapster has became a favorite with Brycen. So much that Brycen and I (Mike) play it nearly every night. We play it until we find three jokes (about 20 minutes) then we stop. To my surprise he has been great about stopping, he has never really gotten upset about putting the Leapster away.
During the picture game, where we have to take pictures of certain items, Brycen gets much enjoyment pushing the button to take the picture (with a prompt)and even looks at me afterwards for approval.
The ballon popping game he really gets excited because of the balloons going up the screen (kinda like when the credits play after a movie, he loves watching those words go up the screen). Brycens absolute favorite game is the game where we use the pen to trace letters. Brycen likes to put his hand over mine while we trace until last night. Brycen decided he wanted to hold the pen and sure enough he tried to trace. He even traced the "L" correctly, this was no fluke because he tried and tried on the "S" but couldn't quite get that one. I am willing to bet after a few more weeks that "S" will not be so tricky for him.
Maybe in a coulple months he will be able to play the Leapster on his own, never thought he would even hold the pen on his own but look at him now...
Sunday, May 30, 2010
Saturday, May 29, 2010
Letter to the public
Dear family that was fishing by the lake this morning:
I know that you were just staring at myself and my children for about 10 minutes because they are the cutest kids you have ever seen! Yes, my son may jump up and down and flap his arms when he is excited, but don't you wish you would get excited about those little things in life like he was when watching the two ducks swim near shore. Yes, my son may make lots of noises that you cannot understand, but at least he is attempting to communicate unlike many of you whom just think it is polite to stare.
If you are unsure and have questions about how my child is acting, please feel free to come over and ask me. Of course, if I am in the middle of a meltdown with him, it would be best for you to just walk away and ask someone else, but today both of my children were acting like perfect angels and were enjoying what the park and lake had to offer. So you had your chance to find out why my son does the things he does and to educate yourself on what you will probably encounter again in another public setting within a matter of days as these things he does is more and more common now. You did not take your chance, therefore you are the one that will suffer when another parent someday will not hold back from telling you like it is.
Thanks for staring at us and making me feel self conscious about things that my son cannot control because he is a unique human being and battling things inside and outside of him that many of us will never understand! Your ignorance and rudeness was much appreciated in a beautiful setting by the lake. You are the one that will live the rest of your life not knowing what a precious miracle my son is, while I get the wonderful privilege of being his mother for the rest of my life and will die with a heart full of love and a life full of challenges that were accomplished!
I know that you were just staring at myself and my children for about 10 minutes because they are the cutest kids you have ever seen! Yes, my son may jump up and down and flap his arms when he is excited, but don't you wish you would get excited about those little things in life like he was when watching the two ducks swim near shore. Yes, my son may make lots of noises that you cannot understand, but at least he is attempting to communicate unlike many of you whom just think it is polite to stare.
If you are unsure and have questions about how my child is acting, please feel free to come over and ask me. Of course, if I am in the middle of a meltdown with him, it would be best for you to just walk away and ask someone else, but today both of my children were acting like perfect angels and were enjoying what the park and lake had to offer. So you had your chance to find out why my son does the things he does and to educate yourself on what you will probably encounter again in another public setting within a matter of days as these things he does is more and more common now. You did not take your chance, therefore you are the one that will suffer when another parent someday will not hold back from telling you like it is.
Thanks for staring at us and making me feel self conscious about things that my son cannot control because he is a unique human being and battling things inside and outside of him that many of us will never understand! Your ignorance and rudeness was much appreciated in a beautiful setting by the lake. You are the one that will live the rest of your life not knowing what a precious miracle my son is, while I get the wonderful privilege of being his mother for the rest of my life and will die with a heart full of love and a life full of challenges that were accomplished!
Monday, May 24, 2010
Consistency=Progress
I can hardly believe how much progress Brycen has already made with the consistent 1:1 speech therapy! We had our 4th appt today (5th if you count the initial evaluation where they observed and attempted to test him)...and he already is doing two things that are part of his 5 goals they have implemented.
First off, most children/adults with autistic disorder require pictures to communicate. Brycen is familiar with pictures as we have been inconsistently using them for over a year now. The first step for children is to recognize the pictures and associate the pic with an activity or a task. The next step is the child pointing at the picture of activity they want to do or the picture of their next task. This is the step where Brycen has been with us (and assuming with school as they have yet to tell us differently). The next step in communication with pictures is that he hands that desired/task picture to the staff/parent to let them know what he wants or what is next. HE DID THIS TODAY! One of his goals is to choose an activity from two picture choices...and he actually picked up the picture and put it in the SLP's hand with a prompt, but prompts are always where the learning starts!
Secondly, we are all aware that Brycen's attention span is very minimal. It can be awesome sometimes with various enjoyable activities, but even that is never consistent. What he might do one day for 10 minutes is not what he wants to do the next day, and will only do it for a minute. So, the SLP has implemented a goal for attention span that they will split his session into 5 different activities and he will need to stay on task for the entire 5 minutes with that activity with the help of a timer. On Friday, they informed me that he actually seemed to understand what the timer was meaning even though they had only been using it for 3 sessions. Today, the SLP said they did not need to use the timer at all! He stayed on task for the 5 minutes with no problem! Isn't that absolutely amazing?!
Now our job as the parents is to use the tools they are implementing with him and include that in his daily life for consistency. We haven't been the most consistent in the past, mostly because it's disappointing when he doesn't catch onto something and your patience runs thin at some point after repeating yourself a hundred times in one sitting! But when I see the progress already made with the consistency they are giving him just in 1/2 hour sessions...it will make it so much easier to continue this progress at home as we have seen what he can do with the right tools and the right people!
First off, most children/adults with autistic disorder require pictures to communicate. Brycen is familiar with pictures as we have been inconsistently using them for over a year now. The first step for children is to recognize the pictures and associate the pic with an activity or a task. The next step is the child pointing at the picture of activity they want to do or the picture of their next task. This is the step where Brycen has been with us (and assuming with school as they have yet to tell us differently). The next step in communication with pictures is that he hands that desired/task picture to the staff/parent to let them know what he wants or what is next. HE DID THIS TODAY! One of his goals is to choose an activity from two picture choices...and he actually picked up the picture and put it in the SLP's hand with a prompt, but prompts are always where the learning starts!
Secondly, we are all aware that Brycen's attention span is very minimal. It can be awesome sometimes with various enjoyable activities, but even that is never consistent. What he might do one day for 10 minutes is not what he wants to do the next day, and will only do it for a minute. So, the SLP has implemented a goal for attention span that they will split his session into 5 different activities and he will need to stay on task for the entire 5 minutes with that activity with the help of a timer. On Friday, they informed me that he actually seemed to understand what the timer was meaning even though they had only been using it for 3 sessions. Today, the SLP said they did not need to use the timer at all! He stayed on task for the 5 minutes with no problem! Isn't that absolutely amazing?!
Now our job as the parents is to use the tools they are implementing with him and include that in his daily life for consistency. We haven't been the most consistent in the past, mostly because it's disappointing when he doesn't catch onto something and your patience runs thin at some point after repeating yourself a hundred times in one sitting! But when I see the progress already made with the consistency they are giving him just in 1/2 hour sessions...it will make it so much easier to continue this progress at home as we have seen what he can do with the right tools and the right people!
Friday, May 21, 2010
2 great articles from CNN.com & Famous parents of children with autism
I've posted links to two articles that I found on CNN.com that were specifically about autism...a parent being in denial (did you know the actress that played Frenchy in Grease has a son with autism?) and having breakthroughs, as well as another article about how meltdowns affect both child and parent including the effects judgement from the public has on a parent.
I hope you find these articles just as interesting as I did!
Also, did you know the following well-known people have a child with Autism and most are very active in the advocating and fundraising for organizations like Autism Speaks?!
Aidan Quinn-actor that has a daughter with autism
Jenny McCarthy- actress, author, and comedian that has a son with autism
Edward Asner- actor that has a son with autism
Joe Mantegna- actor, director, writer, producer with a daughter with autism
Gary Cole- actor that has a daughter with autism
John Travolta- actor whose son with autism died of a seizure almost a year ago
Dan Marino- former NFL quarterback that has a son with autism and created the Dan Marino Foundation
Doug Flutie- former NFL star that has a son with autism and created the Doug Flutie Jr. Foundation for Autism, Inc
Greg Haugen- former boxing champion who has a grandson that is diagnosed with autism and created the Greg Haugen Foundation- Fight against autism
William Christopher- actor (famous for his role on Mash) who has a son diagnosed with autism
Sylvester Stallone- actor that has a son diagnosed with autism
Holly Robinson Peete- actress and author, finalist on the current Celebrity Apprentice/chose her Autism foundation as her charity for the show, has a son with autism and actively fundraises for autism with the foundation she created.
Isn't it amazing how many well-known people out there have children with autism? They could use their celebrity status to raise money to improve awareness, education, and for research to find a cure...while many do, it would be nice to see all of them come into the limelight about this and share their experience to help those who are now going through the diagnosis of their own child and starting the fight of their lives.
Study debunks the myth that parents of a child with autism have higher divorce rates
http://www.businessweek.com/lifestyle/content/healthday/639278.html
I don't really need an article to tell me about divorce rates, as both Mike and I have parents and grandparents that are still married and honestly, I think that may be the most influential thing when determining if someone is more likely to divorce over another. I agree that parents of children with autism have far more obstacles than the parent of the typical children, but I disagree that we have more obstacles than parents of children with other chronic and life long disabilities. With Autism, my son does not have a shortened life span...he may be at higher risk of accidents or running out into traffic and may be more likely to be seriously injured that way, but overall he should live a full and healthy life if I keep him close and do my best to protect him from those dangerous situations. I can't imagine being the parent of a child that faces death on a regular basis or a parent of a child that has to have frequent surgeries on major body parts like the heart or brain. I think those things are far more stressful than the symptoms of autism would be...the only difference I can see is if the surgery can cure something, that would be a relief in the long run, whereas we all know there is nothing to cure Autism.
So back to the divorce article, I honestly have no clue how a single parent of a child with autism could do it! It's stressful enough when you have another person to talk things out and to help make decisions, as well as to take over for a few minutes during a meltdown so that you can take your own time-out. If I didn't have Mike to do that...well, I don't even want to think of that because it's not going to happen.
I don't really need an article to tell me about divorce rates, as both Mike and I have parents and grandparents that are still married and honestly, I think that may be the most influential thing when determining if someone is more likely to divorce over another. I agree that parents of children with autism have far more obstacles than the parent of the typical children, but I disagree that we have more obstacles than parents of children with other chronic and life long disabilities. With Autism, my son does not have a shortened life span...he may be at higher risk of accidents or running out into traffic and may be more likely to be seriously injured that way, but overall he should live a full and healthy life if I keep him close and do my best to protect him from those dangerous situations. I can't imagine being the parent of a child that faces death on a regular basis or a parent of a child that has to have frequent surgeries on major body parts like the heart or brain. I think those things are far more stressful than the symptoms of autism would be...the only difference I can see is if the surgery can cure something, that would be a relief in the long run, whereas we all know there is nothing to cure Autism.
So back to the divorce article, I honestly have no clue how a single parent of a child with autism could do it! It's stressful enough when you have another person to talk things out and to help make decisions, as well as to take over for a few minutes during a meltdown so that you can take your own time-out. If I didn't have Mike to do that...well, I don't even want to think of that because it's not going to happen.
IEP...why is it so hard?
As most of you know, we had Brycen's IEP yesterday afternoon. This sets the stage for next year's goals, speech therapy, and accomodations that are needed for Brycen to attend school. I'm not going to detail the entire IEP here (I actually don't have a final copy anyway as the copy I was given was a draft and didn't even have all the pages printed in it) as this is a very emotional time for me, and I would assume Mike as well but I am not going to speak for him here. I know I have said before that preparing for an IEP and then the actual IEP meeting is the start of another cycle of grief according to most parents of children with disabilities. Every time I see in writing just how far behind Brycen is or the fact that he needs far more accomodations than the typical child in order to thrive in school and just make it through the day, it is very, very overwhelming. I can talk and blog about it, but honestly until you are in the parent's position sitting across the table from a bunch of school representatives that are planning out the entire next year for your child, it is just not possible for another person to understand the unbelieveable emotion that is attached to this one part of our entire life. AND to think we have to do this over and over and over for the next 15 or so years of his life...words cannot express how that makes me feel!
To summarize his meeting and goals for the next year, he will be working on word recognization, using pictures/sign language/verbal to respond to questions asked of him, making choices, and social skills. His speech therapy at school was slightly increased to 100 minutes per month (actually only 80 of work with him, as the other 20 is used for teacher/therapist consultation and communication). He will not receive any occupational therapy at this time, but we will be seeking out a new evaluation of this as we have observed increased sensory issues, as well as he is falling behind in gross motor skills so a physical therapy evaluation may also be completed per our request. He will be placed in a 4 yr old room that will consist of both typically developing children and other children with special needs. He may be introduced to a basic communication device that will help him with making choices and answering questions using basic pictures that attach to the device and verbalize what the picture is. The consensus is that though he may have developed 20+ spoken words over the school year, those words are only spontaneous on occasion and are mostly prompted words. "He does not have functional communication skills, does not have an effective and appropriate way of expressing his wants/needs/disagreements, and he does not possess the skills needed to engage socially with peers."
While most of our concerns were addressed and included in some form of the IEP, I have concluded that as parents, we may never be happy with what the school can give him. I feel he needs more individualized speech therapy to set the stage and give us direction on what to do at home with him. At this time, we will still be utilizing speech clinics outside of school to give him the most opportunities available to work on his communication skills, more often on school breaks and in the summer, and a little less when school is in session.
As a mother, I want the world for my children! As a parent of typical children, we give up so much happily to parent those children and include them in things they enjoy. We don't go on as many vacations, we don't see friends as often as before, our financial means are more strapped than before, etc...but as a parent of a child with a disability, what we give up is even more than what we ever imagined! Though it seems like a burden at times and a disappointment when we can't do or afford the things that other families can, this is our life and we do the best we can! I don't want people to think I just said that my child is a burden, because that is not what I meant. I mean all the things we have to attend, organize, prepare for due to his disability is a burden...loving our child that needs us far more than we ever imagined is a blessing!
To summarize his meeting and goals for the next year, he will be working on word recognization, using pictures/sign language/verbal to respond to questions asked of him, making choices, and social skills. His speech therapy at school was slightly increased to 100 minutes per month (actually only 80 of work with him, as the other 20 is used for teacher/therapist consultation and communication). He will not receive any occupational therapy at this time, but we will be seeking out a new evaluation of this as we have observed increased sensory issues, as well as he is falling behind in gross motor skills so a physical therapy evaluation may also be completed per our request. He will be placed in a 4 yr old room that will consist of both typically developing children and other children with special needs. He may be introduced to a basic communication device that will help him with making choices and answering questions using basic pictures that attach to the device and verbalize what the picture is. The consensus is that though he may have developed 20+ spoken words over the school year, those words are only spontaneous on occasion and are mostly prompted words. "He does not have functional communication skills, does not have an effective and appropriate way of expressing his wants/needs/disagreements, and he does not possess the skills needed to engage socially with peers."
While most of our concerns were addressed and included in some form of the IEP, I have concluded that as parents, we may never be happy with what the school can give him. I feel he needs more individualized speech therapy to set the stage and give us direction on what to do at home with him. At this time, we will still be utilizing speech clinics outside of school to give him the most opportunities available to work on his communication skills, more often on school breaks and in the summer, and a little less when school is in session.
As a mother, I want the world for my children! As a parent of typical children, we give up so much happily to parent those children and include them in things they enjoy. We don't go on as many vacations, we don't see friends as often as before, our financial means are more strapped than before, etc...but as a parent of a child with a disability, what we give up is even more than what we ever imagined! Though it seems like a burden at times and a disappointment when we can't do or afford the things that other families can, this is our life and we do the best we can! I don't want people to think I just said that my child is a burden, because that is not what I meant. I mean all the things we have to attend, organize, prepare for due to his disability is a burden...loving our child that needs us far more than we ever imagined is a blessing!
Saturday, May 15, 2010
Love...such an abstract concept
Brycen giving Aubree a kiss when she was only a couple weeks old.
Giving Aubree a kiss while playing on the floor recentlyWe've never heard Brycen say "I love you"...even before he regressed, he just never grasped this concept or had the development to put those words together. He is going to be 4 years old in two months and most children at this age understand a little about love and have probably said it a gazillion times back to their parents by now.
A week or so ago while Brycen was sitting next to Aubree on the floor, I asked him "Do you love your sister?"...and he immediately reached over and kissed her on the cheek! This is the first response we have ever gotten out of him when we tell him that we love him or mention anything about love. For a couple months now, when Aubree hears love or when we say "I love you" to her, she immediately wants to kiss us. I'm not sure if he learned this from watching her or if his brain is just starting to grasp the concept! Either way, it is absolutely exciting for him not only to hear and understand my question (hence cognitive skills are there!) but to respond in an appropriate way to the question.
Think about it though..."Love" is such an abstract concept. You can't really show it in a picture to a child with Autism as that is usually how you explain things to them. Most children with autism work best with visual aids. Brycen is going to be working on emotions with his new Speech and Language Therapist at the Spencer hospital and while we can find pictures of happiness (smiling) and sadness (tears and frowning)...I cannot think of a single picture that can demonstrate "love" to him in a way he can understand it. If we have a picture of two people hugging, that means "hug" and a picture of two people kissing means "kiss." So, how do we explain "love" to him now and "love" to him in the future when he is possibly seeking out intimate relationships? And in addition to that, how do you explain the difference in those two types of love? Wow...there is just more and more to think about with his development! The questions and the hard work will never end with him.
While I want to get him to the point of saying new words (possibly "I love you" someday), new words does not mean effective communication. Most children with autism are on "automatic pilot" when talking, whether they are imitating something they have heard on TV or from another person (specifically called Echolia) or they are automatically responding to questions they have been asked multiple times and have been trained to answer a certain way.
When someone asks "how are you doing?", most people automatically reply "good" or "fine" and "how are you?". This is a general example of how we respond automatically to a question without really taking the time to understand the actual question, or in a child with autism's case, they may not have the ability to understand the actual question but have just been "trained" to answer that way whether it is through ABA (Applied Behavior Analysis) therapy or similar therapies.
Anyway, I have went off on a tangent like I always do...but back to the idea of "love" and how to explain it to Brycen. I am thinking the only real way to explain it is to just shower him with lots of love every single day with hugs, kisses, I love you's, positive words, high-5's, and so on...and hopefully one day he can associate all of this "love" we are showing him with the actual word. Maybe, just maybe one day we will hear that sweet voice say "I love you, Mommy/Daddy."
Friday, May 14, 2010
The Verdict is in...Speech Therapy
After a quick evaluation and observation this morning, the SLP at the Spencer hospital has recommended 2-3 times per week of speech therapy with 1/2 hr per session due to Brycen's limited attention span. She did emphasize that she preferred 3 times per week, but no less than 2 times per week. While I did not receive any info on where they feel his communication development is right now (prob because that is hard to do off of an hour evaluation), I did receive info on their plans for working with him, which I have never, ever received from the school's SLP. The plan is to use a social schedule and work in various areas for 5-10 minutes at a time to build up attention span. They are also going to duplicate the schedule for us at home so we can all be consistent which is something I have wanted for the entire school year. She is going to work on functional communication, more sign language, obviously more spoken words, and also work on identifying emotions due to his aggressive behaviors. The hope is that he can identify and communicate to us through a picture if he is feeling angry so we can be proactive before the aggression starts. Same with feeling happy of course!
I decided that their thoughts and actions are more aligned with what Mike and I want for him, therefore I am not hesitating to pull him from school over the next week and half to take him to therapy. Since he spent an hour with her today and seemed to respond so well to being around her, I do not want a gap in between today and the time he sees her next, so we are already scheduled for Monday, Wednesday, and Friday next week. He will actually be seeing a different SLP in same office on the Friday as I would like him to have a little variety and not get too attached to one person.
Though I know that driving three times a week there and back, 75 miles round trip and 2-2 1/2 hours of our time, will take a toll on our finances and available time for work (though I still have hope that Medicaid will help with the mileage), our child is far more important! If he was diagnosed with cancer and they were recommending chemo or another therapy three times a week that would help save his life, I would never hesitate to do that...so why would I hesitate to do this?! Same concept to me. Communication is something we all need to succeed in this world, so we are willing to do all that is in our means to help him along. And since we have finally found some people that seem to feel the same way and have knowledge of what he needs and are willing to address it...another reason to not turn down this opportunity!
I decided that their thoughts and actions are more aligned with what Mike and I want for him, therefore I am not hesitating to pull him from school over the next week and half to take him to therapy. Since he spent an hour with her today and seemed to respond so well to being around her, I do not want a gap in between today and the time he sees her next, so we are already scheduled for Monday, Wednesday, and Friday next week. He will actually be seeing a different SLP in same office on the Friday as I would like him to have a little variety and not get too attached to one person.
Though I know that driving three times a week there and back, 75 miles round trip and 2-2 1/2 hours of our time, will take a toll on our finances and available time for work (though I still have hope that Medicaid will help with the mileage), our child is far more important! If he was diagnosed with cancer and they were recommending chemo or another therapy three times a week that would help save his life, I would never hesitate to do that...so why would I hesitate to do this?! Same concept to me. Communication is something we all need to succeed in this world, so we are willing to do all that is in our means to help him along. And since we have finally found some people that seem to feel the same way and have knowledge of what he needs and are willing to address it...another reason to not turn down this opportunity!
Thursday, May 13, 2010
Insight into how I am feeling about tomorrow's speech evaluation
I just wanted everybody to get a little insight into my feelings and thoughts about Brycen's newest speech evaluation tomorrow. Going to these types of things are bittersweet...while I am excited and looking forward to hearing he has made enough progress to rate past the 16mo old level he was last August in Iowa City...I also am already feeling the grieving process pushing it's way in again. I want to hear what SLP's that are not funded by the school district have to say about what he really and absolutely needs in order to start progressing again. I really think the SLP's in the school district are a little skewed in their recommendations for speech in school. Obviously since they only recommended ONE HOUR per month for a child that was 3 and mostly non-verbal last year. One would think they can't deny the fact that his progression has been slow and actually has stalled the last couple months...but then again I know they have budgets to stick to. I just wonder how much speech a child that is completely non-verbal would receive in the school...1 1/2 hours per month?! That's ridiculous!
Anyway, need to get off the subject of the school because it has obviously been a sore spot lately. Back to tomorrow...the low feelings of doing another speech evaluation by different people is once again hearing how far behind my child is. Not that any SLP has ever put it to me in a negative way...but seriously, how many parents get to hear their almost 4 yr old is still communicating half of his age or less?! Well, that is what I am going to hear tomorrow...and though once again, I am excited to hear that he possibly is further than 16mo old level, I want to be realistic with the fact he may have inched up to the 18mo old level.
Though this cycle of the grieving may hopefully be short lived, I do realize it will happen all over again next week when we have his IEP. That would be the reason Mike and I have asked Mallory to stay later following his IEP so we can go sulk and grieve with an alcoholic beverage in our hands:)
Anyway, need to get off the subject of the school because it has obviously been a sore spot lately. Back to tomorrow...the low feelings of doing another speech evaluation by different people is once again hearing how far behind my child is. Not that any SLP has ever put it to me in a negative way...but seriously, how many parents get to hear their almost 4 yr old is still communicating half of his age or less?! Well, that is what I am going to hear tomorrow...and though once again, I am excited to hear that he possibly is further than 16mo old level, I want to be realistic with the fact he may have inched up to the 18mo old level.
Though this cycle of the grieving may hopefully be short lived, I do realize it will happen all over again next week when we have his IEP. That would be the reason Mike and I have asked Mallory to stay later following his IEP so we can go sulk and grieve with an alcoholic beverage in our hands:)
Friday, May 7, 2010
There are wonderful people out there that care!
I have been blessed this morning with speaking with someone that truly cares about people and what is best for them! I heard back from the speech clinician at the local hospital about possibly working with Brycen this summer since he doesn't qualify for extended school year. While the first part of the conversation was not great news, she followed with some of the best news I have heard in a long time. Unfortunately, she does not feel qualified to provide speech therapy to Brycen as she mostly works with geriatric and swallowing issues...she said the last time she provided therapy to a child with autism was back in mid-late '90's. I was not upset with her for deciding this, as I appreciate her honesty and I respect her so much for realizing what is not her specialty and wanting the most qualified and best that can be found for Brycen. While during this conversation, she asked many questions about where Brycen is at now, where he started, his regression, etc...and she was so empathetic about the regression and validated my feelings of being scared that he will regress again over the summer. This is all from a woman that has never met me or Brycen and honestly does not know that much about Autism!
The next thing she said and offered to do is the most amazing part of this! She said she wanted to advocate on our behalf and make some calls herself to see what and who she can find to help us out. Wow! Again, what an amazing woman to offer to do this without even knowing us or getting anything out of this (just another example of how happy we have always been with the employees of the hospital!). So she called back shortly with a couple ideas. She said she spoke with a parent of a child with autism that is low functioning and that family enlisted the help of Buena Vista Univ. education department to find a student to help them out. Only situation with this is they probably paid out of pocket for this which is not in our financial means right now. She also spoke with the speech therapy dept up at the Spencer Hospital which is about 40 miles north. They work with mostly pediatric clients and the intern in the dept right now is in her master's program and actually wants to specialize in Autism! The best news, they are accepting new clients right now!
So shortly following this phone call (and saying many thanks to this woman that has shown more support for us than many other people in our lives), I called the speech clinic there and spoke with a very nice therapist that explained the process. At this point, we just need his doctor to fax an order for speech therapy and treatment to the clinic (so Medicaid insurance will cover since our private insurance does not cover therapies)and then they will call us back to get started. Yes, it is 45 minutes away...and yes it will take me away from being available for work 3 hours at a time...and yes, I will probably have to bring Aubree along for the appts...but what other choice do we have for him?! This is the most critical time of his development (or lack thereof) and he needs all that can be given to him...and it's unfortunate the school district doesn't see it that way. So, we will still fight for Medicaid to reimburse the mileage to us like they do for many other families that have to go out of town/state for appts and therapies...but even if they don't grant it, we aren't going to say no to this opportunity. This is our son and his basic living skills are lacking and at risk for not developing...any parent in the same situation would be doing this, if not more!
The next thing she said and offered to do is the most amazing part of this! She said she wanted to advocate on our behalf and make some calls herself to see what and who she can find to help us out. Wow! Again, what an amazing woman to offer to do this without even knowing us or getting anything out of this (just another example of how happy we have always been with the employees of the hospital!). So she called back shortly with a couple ideas. She said she spoke with a parent of a child with autism that is low functioning and that family enlisted the help of Buena Vista Univ. education department to find a student to help them out. Only situation with this is they probably paid out of pocket for this which is not in our financial means right now. She also spoke with the speech therapy dept up at the Spencer Hospital which is about 40 miles north. They work with mostly pediatric clients and the intern in the dept right now is in her master's program and actually wants to specialize in Autism! The best news, they are accepting new clients right now!
So shortly following this phone call (and saying many thanks to this woman that has shown more support for us than many other people in our lives), I called the speech clinic there and spoke with a very nice therapist that explained the process. At this point, we just need his doctor to fax an order for speech therapy and treatment to the clinic (so Medicaid insurance will cover since our private insurance does not cover therapies)and then they will call us back to get started. Yes, it is 45 minutes away...and yes it will take me away from being available for work 3 hours at a time...and yes, I will probably have to bring Aubree along for the appts...but what other choice do we have for him?! This is the most critical time of his development (or lack thereof) and he needs all that can be given to him...and it's unfortunate the school district doesn't see it that way. So, we will still fight for Medicaid to reimburse the mileage to us like they do for many other families that have to go out of town/state for appts and therapies...but even if they don't grant it, we aren't going to say no to this opportunity. This is our son and his basic living skills are lacking and at risk for not developing...any parent in the same situation would be doing this, if not more!
Teachers
This is a very sensitive subject as I know many teachers, not only in my family, but among our friends also. Teachers do not get enough credit for what they do each day! I cannot imagine how hard it is to teach some children that do not have supportive parents to continue the teaching at home...it's a battle most teachers face to help these kids achieve all they can. I feel teachers have a very important role in a child's school years, as I continue to think back to many of my teachers that made a difference in my life. These same children are going to hopefully have those same feelings towards the teachers they have now! Once again, I think teachers are wonderful and very dedicated!
Now, on the other hand...like I said, I know of many teachers in our family and friends, and the majority really seem to enjoy the career they chose. They look forward to seeing the children learn and progress and seem to value their position, make us aware of their children's accomplishments (that's for you, Brenda, for all the hardwork you put in with those kids this year and their recent test results show that!). Then there are a few that frequently complain about the kids they teach, or the fact they even have to go to work...or that they didn't get a snow day like they were hoping for and so on. When I see or hear these comments, it makes me sad for them that they must not enjoy the career they once thought they would. Please don't confuse this with those people that may just complain in general about funding for the school, or how a principal won't listen to them, etc. Those are validated complaints that most people have at their jobs at some point or another. I am talking about those teachers that just don't seem to enjoy what they do and express negative thoughts frequently about their position.
If you would have asked me a year ago how I felt when I would hear these comments, I probably wouldn't have cared either way. But now that I am a parent of a school-ager, I am concerned for my child as I personally do not want my child in a room with a teacher that doesn't want to be there. How much can a child learn if their own teacher doesn't even want to be there? Are these negative feelings being portrayed to those students? I expect Brycen's teachers to care about what they do and look forward to seeing him every day.
Once again, I do not know what it is like to be a teacher and what they go through, but I do know what it is like to be a parent. I also know what it is like to be in a job that I do not care for (obviously I am not there anymore) and I definitely know what it is like to be in a job that I take pride in and love. Obviously with the way things are, it may not be feasible for people to just quit a job that they are unhappy with due to finances, but I really think these people need to make the best out of the job they are in...or need to be at least looking for something they would be happy with doing.
I don't want to seem like I am criticizing those that make these comments or to start a debate on how it feels to be a teacher (see above), but I really want those teachers to know how it feels to hear those things from the parent's point of view. Teachers are not the only ones that this applies to obviously...but this was just the example that keeps coming up in my life. Please, please, please take pride in the job you do as teachers, because only the most dedicated and patient people can be a teacher, and take pride in those little faces you see each day...don't consider teaching a hinderance or negative in your life, because once again, teachers are a huge part of a child's life and learning!
Now, on the other hand...like I said, I know of many teachers in our family and friends, and the majority really seem to enjoy the career they chose. They look forward to seeing the children learn and progress and seem to value their position, make us aware of their children's accomplishments (that's for you, Brenda, for all the hardwork you put in with those kids this year and their recent test results show that!). Then there are a few that frequently complain about the kids they teach, or the fact they even have to go to work...or that they didn't get a snow day like they were hoping for and so on. When I see or hear these comments, it makes me sad for them that they must not enjoy the career they once thought they would. Please don't confuse this with those people that may just complain in general about funding for the school, or how a principal won't listen to them, etc. Those are validated complaints that most people have at their jobs at some point or another. I am talking about those teachers that just don't seem to enjoy what they do and express negative thoughts frequently about their position.
If you would have asked me a year ago how I felt when I would hear these comments, I probably wouldn't have cared either way. But now that I am a parent of a school-ager, I am concerned for my child as I personally do not want my child in a room with a teacher that doesn't want to be there. How much can a child learn if their own teacher doesn't even want to be there? Are these negative feelings being portrayed to those students? I expect Brycen's teachers to care about what they do and look forward to seeing him every day.
Once again, I do not know what it is like to be a teacher and what they go through, but I do know what it is like to be a parent. I also know what it is like to be in a job that I do not care for (obviously I am not there anymore) and I definitely know what it is like to be in a job that I take pride in and love. Obviously with the way things are, it may not be feasible for people to just quit a job that they are unhappy with due to finances, but I really think these people need to make the best out of the job they are in...or need to be at least looking for something they would be happy with doing.
I don't want to seem like I am criticizing those that make these comments or to start a debate on how it feels to be a teacher (see above), but I really want those teachers to know how it feels to hear those things from the parent's point of view. Teachers are not the only ones that this applies to obviously...but this was just the example that keeps coming up in my life. Please, please, please take pride in the job you do as teachers, because only the most dedicated and patient people can be a teacher, and take pride in those little faces you see each day...don't consider teaching a hinderance or negative in your life, because once again, teachers are a huge part of a child's life and learning!
Thursday, May 6, 2010
Deciding when it's time to stop torturing myself
I am signed up to attend a free training tonight in Fort Dodge for parents, caregivers, and teachers of children with Autism given by Child Health Specialty Clinics (an outreach of U of I who gave Brycen his tentative diagnosis in June of last year). I decided last night that I just can't go...as much as I love to learn things about Autism, going to trainings and conferences about it is a form of torture to me. I thought if I had someone to go with me, it might make it easier, but nobody from around here informed me that they signed up, so I would be on my own...much less gas money to drive over an hour and back is not exactly free-flowing around here.
So let me explain why it is torture as I'm sure some of you are thinking what is better than being around people that completely understand my daily issues with Brycen and what is better than learning more about the horrible thing that affects my child. Well, here it is...I attended a free communication training last December in Des Moines that focused on helping children with autism learn how to communicate through pictures and technological devices. Following that training, I became so focused on making sure I had what I needed to start this...to the point of overwhelming me and causing me more stress than was needed. Then I decided to attend a conference in Des Moines on April 2 to learn about helping children with autism and socialization skills...again, I just became so focused on this for weeks later that I could not stop myself from analyzing what I am doing wrong, what I can do better, and who the heck can I bribe to borrow their neurotypical children to learn how to "mentor" Brycen in socializing.
Every time I go to one of these trainings, I want to cry...it puts everything that we are going through into perspective once again. I can get through the day-to-day stuff as it just becomes a routine to battle the daily issues that arise...but then someone puts it in writing in a handout in front of you, or people ask questions about adults with autism...and it just reminds me of what we are really fighting here...a life-long disorder that the doctors still have no clue as to why or how it manifests, where it manifests, how many areas of the body it can affect, and of course absolutely no cure despite the many areas of therapy that continue to form.
On the other hand, I do have an obsession with building my "Autism library" and continue to order books that I feel will help me address certain things, like sensory issues and socialization skills, as well as a handful of children's books that focus on siblings and friends and teaching them about Autism in simpler terms and stories. The reason why I can handle reading these books and not going to trainings, is it doesn't matter if I cry while reading the book...I can just sit it down and come back to it when I feel I am a little stronger to do so. A training is in a room full of people and I don't want to be that parent that is still crying one year after the diagnosis.
This just emphasizes how they say that the grieving really never ends...it just cycles and cycles...and as a mother, I need to know when it is time to say "enough" and to stop "torturing myself." I need to just do what I do, learn at my own pace, be the best parent I can with the tools I have, and not feel vulnerable to the people that put these trainings on and their handouts!
So let me explain why it is torture as I'm sure some of you are thinking what is better than being around people that completely understand my daily issues with Brycen and what is better than learning more about the horrible thing that affects my child. Well, here it is...I attended a free communication training last December in Des Moines that focused on helping children with autism learn how to communicate through pictures and technological devices. Following that training, I became so focused on making sure I had what I needed to start this...to the point of overwhelming me and causing me more stress than was needed. Then I decided to attend a conference in Des Moines on April 2 to learn about helping children with autism and socialization skills...again, I just became so focused on this for weeks later that I could not stop myself from analyzing what I am doing wrong, what I can do better, and who the heck can I bribe to borrow their neurotypical children to learn how to "mentor" Brycen in socializing.
Every time I go to one of these trainings, I want to cry...it puts everything that we are going through into perspective once again. I can get through the day-to-day stuff as it just becomes a routine to battle the daily issues that arise...but then someone puts it in writing in a handout in front of you, or people ask questions about adults with autism...and it just reminds me of what we are really fighting here...a life-long disorder that the doctors still have no clue as to why or how it manifests, where it manifests, how many areas of the body it can affect, and of course absolutely no cure despite the many areas of therapy that continue to form.
On the other hand, I do have an obsession with building my "Autism library" and continue to order books that I feel will help me address certain things, like sensory issues and socialization skills, as well as a handful of children's books that focus on siblings and friends and teaching them about Autism in simpler terms and stories. The reason why I can handle reading these books and not going to trainings, is it doesn't matter if I cry while reading the book...I can just sit it down and come back to it when I feel I am a little stronger to do so. A training is in a room full of people and I don't want to be that parent that is still crying one year after the diagnosis.
This just emphasizes how they say that the grieving really never ends...it just cycles and cycles...and as a mother, I need to know when it is time to say "enough" and to stop "torturing myself." I need to just do what I do, learn at my own pace, be the best parent I can with the tools I have, and not feel vulnerable to the people that put these trainings on and their handouts!
Tuesday, May 4, 2010
So this is what a typical child does...
Wow is all I can say about Aubree and her burst of language! We never got to this point with Brycen so we are really in awe of all the new words, imitations, and things she can do.
On the other side of things, it is a sad moment when you realize your 22 month old is now communicating far past her brother that is almost 2 years older than her:(
While Aubree's words and actions are spontaneous (example: I was filling Mike in on the latest news of Brycen's upcoming IEP and DHS questioning paying milege for speech therapy out of town and was asking him why they have to make things so much more difficult in addition to the issues we already have to deal with...and Aubree just started yelling "why? why? why?"), Brycen's are prompted or just imitation. He has very few spontaneous words, so when I was excited to report a few months ago that he knows 20+ words...I was really saying he can pronounce these words (or most of the word) and be understood, but he does not say these words spontaneously. Spontaneous words are a must in order to have effective expressive communication. Not only that, but he definitely lacks in the receptive communication area also, though we have seen a huge improvement in him following basic 1-2 step directions as long as they are something he is familiar with or part of his routine.
I have quit counting Aubree's spontaneous words and phrases just like the parent of a typical child does when the child gets to 50+ words. I continue to count and keep track of Brycen's prompted and imitation words like a proud parent does of a child with autism. So despite recent improvement and exciting moments with him, the gap just keeps widening between his chronological age and developmental age in communication. When we started this whole thing, he was about 2 1/2 and rated at a 16 month old which was just over a year gap. Now he is almost 4 and rating at a 1 1/2 yr old level (at the most) which is now almost a 2 1/2 yr gap. This is definitely one of the times when I say "Autism SUCKS!"
While we look forward to seeing Aubree progress and hearing her sweet voice saying new words, phrases, and carrying on a basic conversation with us...it really puts into perspective what Autism has taken from Brycen.
On the other side of things, it is a sad moment when you realize your 22 month old is now communicating far past her brother that is almost 2 years older than her:(
While Aubree's words and actions are spontaneous (example: I was filling Mike in on the latest news of Brycen's upcoming IEP and DHS questioning paying milege for speech therapy out of town and was asking him why they have to make things so much more difficult in addition to the issues we already have to deal with...and Aubree just started yelling "why? why? why?"), Brycen's are prompted or just imitation. He has very few spontaneous words, so when I was excited to report a few months ago that he knows 20+ words...I was really saying he can pronounce these words (or most of the word) and be understood, but he does not say these words spontaneously. Spontaneous words are a must in order to have effective expressive communication. Not only that, but he definitely lacks in the receptive communication area also, though we have seen a huge improvement in him following basic 1-2 step directions as long as they are something he is familiar with or part of his routine.
I have quit counting Aubree's spontaneous words and phrases just like the parent of a typical child does when the child gets to 50+ words. I continue to count and keep track of Brycen's prompted and imitation words like a proud parent does of a child with autism. So despite recent improvement and exciting moments with him, the gap just keeps widening between his chronological age and developmental age in communication. When we started this whole thing, he was about 2 1/2 and rated at a 16 month old which was just over a year gap. Now he is almost 4 and rating at a 1 1/2 yr old level (at the most) which is now almost a 2 1/2 yr gap. This is definitely one of the times when I say "Autism SUCKS!"
While we look forward to seeing Aubree progress and hearing her sweet voice saying new words, phrases, and carrying on a basic conversation with us...it really puts into perspective what Autism has taken from Brycen.
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