Sometimes I get so involved in being an advocate for my daughter that I forget to just be her mom. I've noticed lately, that while I've been extremely active in IEP's, doctor's appointments, parent support groups, lectures, reading material on Asperger's, etc. - I've been lagging in checking in with her. Homework has suffered, focus on school is decreased and I've noticed that she's pulling away from our normal, everyday conversations - our silly time.
While I was sitting in a lecture at UC Davis's MIND Institute, I realized that I was in way over my head. Do I really need to know who Piaget, Kohlberg and Gilligan are? Seriously. Do I need to understand the prefrontal cortex? Do I need to know that higher abstract reasoning usually equals better friendships? Hahaha!! I would say no.
I understand that my daughter's brain is wired differently - and I think that my need to be better educated on Apserger's than anyone else that I come into contact with during advocacy for my daughter has led me astray. My thought was that if I know everything that there is to know about Asperger's, the when someone is talking to me about services, interventions and accommodations for my daughter, I could always be one step ahead if they tried to pull one over on me. And I could agree or disagree with recommendations from an educated place. Now - I still think that this is very important. Understanding the disorder and how it affects my daughter is key to getting her appropriate interventions in place. I won't move away from that position, and I'll continue to read about and research interventions, and practical solutions to the barriers and issues that we face.
More importantly, however, rather than sit through another lecture on the biophysical structuring of Asperger's, I'll have dinner with my daughter and encourage her to order her meal on her own. I'll play tic-tac-toe with her on the napkins and I'll laugh at her ridiculous word choices when we play hangman. I'll pay attention to her homework schedule and I'll tell her about other children and individuals with Asperger's and we'll work together to understand the world and how she can successfully live in it.
I'll leave the discussions on cognitive control and executive functions to the scientists and I'll focus on being a mom to a daughter who just happens to have Asperger's.
Remember - DIFFERENT IS BEAUTIFUL!!
Friday, April 30, 2010
Tuesday, April 27, 2010
April 27, 2010 - LAY IT ON THE LINE
Yesterday morning started with me freaking out and in tears. I even wrote my ex-husband an email railing at him for not coming on board with my daughter's Asperger's. He sends gifts at holidays and a check every month, but other than that, he's checked out. That's a different story and not one that I want to discuss right now, though parental alienation would be a good topic for a later post. What I want to talk about in this post is why I was freaking out.
Yesterday my daughter and I laid it all on the line. A couple of weeks ago she had an incident with a girl that threw her for a loop. I discussed this in an earlier blog. At that time, because I didn't know what else to do - I asked her if she'd like for me to speak to some of the students at her school to help them understand Asperger's and the role that it plays on communication and social skills. We had always taken the approach that no one other than teachers and administrators needed to know, so I was hugely surprised when she said yes - that if it would help people understand her and be nice to her, she wanted me to talk to her class. I spoke with the principal and she agreed that it would be a good idea to speak with the 7th grade class, so she arranged to have the kids broken up into two groups during first period which is a "free period". Also, my daughter doesn't attend first period, so I could give the presentation without her being there. My daughter and I also agreed that I would give the presentation on Asperger's and a bit on the autism spectrum in general terms without mentioning her by name - but if kids asked me specific questions, I was allowed to answer them as they relate to her.
So all of this sounds relatively easy right - I mean, I can rattle off facts about Asperger's from the top of my head. The problem started when I started doubting the kids who would be listening to me. What could I say? And did I want them to know that my child has a disability? And most importantly, would the presentation have the opposite effect from what we intended? Would kids start making fun of my daughter because of her differences? On top of this, I spoke to a mother of a set of twins with Asperger's a couple of days before my presentation - wrong move! She scared the bejeezus out of me. I felt completely defeated and incompetent after that conversation.
After berating my ex-husband and doing a bit of meditation, I felt much better. What I realized was that each parent's experience is different because their child - and as a result, their needs - are different. I'm also reading the book Living on the Spectrum which has a section on speaking with your child's classmates. I found this after I'd agreed to do the presentation, so I was really happy to read about success stories and strategies of other presentations. I tried to put all of this into perspective and remember that advocacy on my daughter's behalf could only help her, and possibly other children with differences.
The two things that I wanted to get across, even more than understanding of Asperger's and autism spectrum was COMPASSION and TOLERANCE. So, I gave them a few statistics about autism and Asperger's and then spoke to them about the anxiety that individuals with Asperger's feel related to social situations and how their interactions with individuals with differences were hugely consequential to those individuals. I'm very happy to report that most of the kids were extremely interested in what I had to say, they asked a few questions and one girl informed the group that her father has Asperger's. My daughter also reported that more of her classmates took the time to just say hi. There were not seismic shifts, but she does seem hopeful. Whew! Sometimes you just have to lay it all out and take a chance that others will receive what you have to say.
Remember - DIFFERENT IS BEAUTIFUL!!
Yesterday my daughter and I laid it all on the line. A couple of weeks ago she had an incident with a girl that threw her for a loop. I discussed this in an earlier blog. At that time, because I didn't know what else to do - I asked her if she'd like for me to speak to some of the students at her school to help them understand Asperger's and the role that it plays on communication and social skills. We had always taken the approach that no one other than teachers and administrators needed to know, so I was hugely surprised when she said yes - that if it would help people understand her and be nice to her, she wanted me to talk to her class. I spoke with the principal and she agreed that it would be a good idea to speak with the 7th grade class, so she arranged to have the kids broken up into two groups during first period which is a "free period". Also, my daughter doesn't attend first period, so I could give the presentation without her being there. My daughter and I also agreed that I would give the presentation on Asperger's and a bit on the autism spectrum in general terms without mentioning her by name - but if kids asked me specific questions, I was allowed to answer them as they relate to her.
So all of this sounds relatively easy right - I mean, I can rattle off facts about Asperger's from the top of my head. The problem started when I started doubting the kids who would be listening to me. What could I say? And did I want them to know that my child has a disability? And most importantly, would the presentation have the opposite effect from what we intended? Would kids start making fun of my daughter because of her differences? On top of this, I spoke to a mother of a set of twins with Asperger's a couple of days before my presentation - wrong move! She scared the bejeezus out of me. I felt completely defeated and incompetent after that conversation.
After berating my ex-husband and doing a bit of meditation, I felt much better. What I realized was that each parent's experience is different because their child - and as a result, their needs - are different. I'm also reading the book Living on the Spectrum which has a section on speaking with your child's classmates. I found this after I'd agreed to do the presentation, so I was really happy to read about success stories and strategies of other presentations. I tried to put all of this into perspective and remember that advocacy on my daughter's behalf could only help her, and possibly other children with differences.
The two things that I wanted to get across, even more than understanding of Asperger's and autism spectrum was COMPASSION and TOLERANCE. So, I gave them a few statistics about autism and Asperger's and then spoke to them about the anxiety that individuals with Asperger's feel related to social situations and how their interactions with individuals with differences were hugely consequential to those individuals. I'm very happy to report that most of the kids were extremely interested in what I had to say, they asked a few questions and one girl informed the group that her father has Asperger's. My daughter also reported that more of her classmates took the time to just say hi. There were not seismic shifts, but she does seem hopeful. Whew! Sometimes you just have to lay it all out and take a chance that others will receive what you have to say.
Remember - DIFFERENT IS BEAUTIFUL!!
Monday, April 26, 2010
April 26, 2010 - WHAT THE F@#K!
I haven't written in 10 days. I hope that people are still following. We lost one of our precious family members last week and the world became a bubble of sorrow.
Last week, while in the throes of trying to help my family through a really tough time I had an IEP scheduled for my daughter. It wasn't an ordinary IEP because her therapist was going to be there. This scheduling had taken months, so I decided that I wouldn't cancel the meeting. In attendance were the program specialist, the speech therapist, the school psychologist, my daughter's therapist, one of my older daughters and myself. The principal showed up half an hour later.
The school psychologist started by handing out results of a BASK assessment. This is a simple test of scoring your child on a scale from NEVER to ALWAYS on a wide variety of personality and behavioral traits. It's given to parents and teachers to complete. The child also self-assesses. According to the results of this test, the school psych interpreted that my daughter would qualify for services as an EMOTIONALLY DISTURBED child. Get the FUCK OUT!! Excuse my language, but I really can't think of a more appropriate response. When we looked at the results, it was possible that each aspect of the test taken separately might suggest an emotional disturbance - and saying this is a stretch. Together, the assessment might as well have spelled out ASPERGER'S. But the school psych isn't qualified or experienced enough to make that assessment.
I looked at our therapist and she just shook her head. I went ape shit. I stayed as articulate and professional as possible, but I made it perfectly clear that a label of emotionally disturbed was not to go anywhere near my daughter's file. I also made it clear that the school psychologist, who admits to having no experience with autism, wasn't qualified to assess my daughter or her needs. When I tried to discuss the ADOS test that had been used initially by the district to assess my daughter, and my dissatisfaction over the results - which basically said that my daughter isn't "educationally autistic" - the program specialist and the school psych couldn't have the conversation with me because they're not versed on autism spectrum disorders or Asperger's. So explain to me - why are they there? Why am I trying to get my daughter services as a student on the autism spectrum from a team that isn't qualified to make a decision on needed services and don't understand the disorder?
Our therapist jumped in and made it clear that her professional experience with my daughter - who she has seen every week for eight months - did not support a diagnosis or assessment of emotional disturbance. Thank God she was there. At that point I asserted my parental right under the Education Code to have an outside assessment done. I also found out that none of the accommodations that we discussed two months ago have been implemented. There has been no assessment for full inclusion, nothing. Here we are in April - with just a few weeks of school left and we've gotten nothing done and no improvements for my daughter. Another year gone - wasted! The program specialist actually asked me what I wanted out of these meetings! How about some measures of success? I want to know exactly what the teachers have done and what the results of those accommodations have been. Is that too much to ask? Who's providing leadership to the teachers on this? How are they being trained to implement?
As a result, the meeting was "tabled" until May - at which point we'll probably start all over again. Our therapist was so appalled that she agreed immediately to be at the next meeting, which will probably include a lawyer as well. I left there feeling flabbergasted, frustrated and just plain pissed off! But you know what? It lit a fire in me. I'm keeping my head down and just pushing forward. I talked to another parent, who has many more years of experience in this struggle and many more resources, and she made it clear that it's a constant struggle. I'm ready.
These people better get prepared, because I'm now the most pissed off and determined mother that they'll come across for quite some time. Emotionally disturbed, my ass!
Remember - DIFFERENT IS BEAUTIFUL!!
Last week, while in the throes of trying to help my family through a really tough time I had an IEP scheduled for my daughter. It wasn't an ordinary IEP because her therapist was going to be there. This scheduling had taken months, so I decided that I wouldn't cancel the meeting. In attendance were the program specialist, the speech therapist, the school psychologist, my daughter's therapist, one of my older daughters and myself. The principal showed up half an hour later.
The school psychologist started by handing out results of a BASK assessment. This is a simple test of scoring your child on a scale from NEVER to ALWAYS on a wide variety of personality and behavioral traits. It's given to parents and teachers to complete. The child also self-assesses. According to the results of this test, the school psych interpreted that my daughter would qualify for services as an EMOTIONALLY DISTURBED child. Get the FUCK OUT!! Excuse my language, but I really can't think of a more appropriate response. When we looked at the results, it was possible that each aspect of the test taken separately might suggest an emotional disturbance - and saying this is a stretch. Together, the assessment might as well have spelled out ASPERGER'S. But the school psych isn't qualified or experienced enough to make that assessment.
I looked at our therapist and she just shook her head. I went ape shit. I stayed as articulate and professional as possible, but I made it perfectly clear that a label of emotionally disturbed was not to go anywhere near my daughter's file. I also made it clear that the school psychologist, who admits to having no experience with autism, wasn't qualified to assess my daughter or her needs. When I tried to discuss the ADOS test that had been used initially by the district to assess my daughter, and my dissatisfaction over the results - which basically said that my daughter isn't "educationally autistic" - the program specialist and the school psych couldn't have the conversation with me because they're not versed on autism spectrum disorders or Asperger's. So explain to me - why are they there? Why am I trying to get my daughter services as a student on the autism spectrum from a team that isn't qualified to make a decision on needed services and don't understand the disorder?
Our therapist jumped in and made it clear that her professional experience with my daughter - who she has seen every week for eight months - did not support a diagnosis or assessment of emotional disturbance. Thank God she was there. At that point I asserted my parental right under the Education Code to have an outside assessment done. I also found out that none of the accommodations that we discussed two months ago have been implemented. There has been no assessment for full inclusion, nothing. Here we are in April - with just a few weeks of school left and we've gotten nothing done and no improvements for my daughter. Another year gone - wasted! The program specialist actually asked me what I wanted out of these meetings! How about some measures of success? I want to know exactly what the teachers have done and what the results of those accommodations have been. Is that too much to ask? Who's providing leadership to the teachers on this? How are they being trained to implement?
As a result, the meeting was "tabled" until May - at which point we'll probably start all over again. Our therapist was so appalled that she agreed immediately to be at the next meeting, which will probably include a lawyer as well. I left there feeling flabbergasted, frustrated and just plain pissed off! But you know what? It lit a fire in me. I'm keeping my head down and just pushing forward. I talked to another parent, who has many more years of experience in this struggle and many more resources, and she made it clear that it's a constant struggle. I'm ready.
These people better get prepared, because I'm now the most pissed off and determined mother that they'll come across for quite some time. Emotionally disturbed, my ass!
Remember - DIFFERENT IS BEAUTIFUL!!
Tuesday, April 20, 2010
RIP Felix Medina - age 20
No posts this week - we lost a sweet boy this week to senseless tragedy. Hug your children, tell them that you love them everyday and make sure they know how big the world is.
Friday, April 16, 2010
April 16, 2010 - FOLLOW YOUR INSTINCTS
My daughter had a field trip today to the San Jose Tech Museum. She was incredibly excited about it - she loves anything science, and this is a hands-on museum. We even made it to the school by 6:45 am - which is horrendously early for any field trip! Once we were there I scoped out the group and watched my daughter interact. No surprises, she retreated to the side of the room with a flat expression, waiting to be told where to go. I looked at the list of girls that she would be driving with - I didn't recognize any of the names, but one of the girls had participated in the Renaissance Faire with my daughter and her mom was driving, so I thought it would be a good fit for her.
Then, the inner struggle started...Should I go speak with the mom and tell her that my daughter is an Aspie? Should I try to get her into the car with a girl I know has been kind to her? Or, do I just let her go and trust that she'll be able to handle it? This was a lose-lose situation. If I spoke with the mother, she might feel obligated to "baby" my daughter, which would make her feel uncomfortable. If I didn't speak with her, my daughter's needs might not be met. I opted not to say anything - I reasoned that the teacher was there and he's very informed on my daughter's disorder. I repeatedly reminded her not to wander away from the group, and to try to have a conversation with the other girls. This turned out to be the wrong decision - OF COURSE! One of the comorbid conditions that my daughter has is a speed processing delay, which means that it takes her a bit longer to process information and get it down on paper. She also gets hyper-focused - especially in hands-on museums. This field trip included an assignment, where the students were required to answer questions about specific exhibits on a form, to be turned in on Monday. Well - the other girls were rushing through each exhibit, with my daughter trailing behind. She couldn't get the information that she needed to complete her assignments, and more distressing to her, she didn't get to touch any of the exhibits. When she tried to tell the other girls, a couple of them got snarky and told her that was on her and it was her problem. I always assume that other children will show kindness to my daughter, and I'm always disappointed that they don't. On a side note - this is why children and educators MUST be educated on autism and Apserger's. Maybe with knowledge will come compassion and tolerance. I can't tell you the number of times that my daughter has been mistreated by a teacher or other students. It's no wonder that she's non-verbal in these situations.
Ugh! I should have followed my instincts. I should have taken the mother aside and told her about my daughter being an Aspie and told her that she might need a little extra encouragement or time to complete her assignment and look at each exhibit. Better yet, I should have just gone on the field trip with her. It's so hard to find the balance between being my daughter's advocate and encouraging independence. I know that I can't be at her side at all times and I think that she enjoys going off on her own once in a while. And no matter what happens, she's always excited about field trips and school activities and is eager to participate. She has amazing resilience. So - my lesson learned for today? Follow my freaking instincts. If I come across as over-protective, so be it! When I asked my daughter how she felt deep inside about the experience, she said "I didn't have an experience! And deep down I just feel aggravated". She wasn't aggravated at the mean girls, she was aggravated that she didn't get to fully participate in the activities. I promised her that I'll take her back to the museum for the entire day in the Summer so that she can touch every exhibit and spend as much time on each as she likes.
When I speak with my daughter about these types of experiences, she doesn't seem to have any lasting emotional distress over them, but I feel like each experience is a brick that goes on the wall that she's slowly building around herself. On this note, I'll quickly say that for these reasons, it's so important for girls with Asperger's, especially adolescents to have access to quality programs that include other girls with the same or similar disorders. There are no gender specific programs in our area, which is something that I intend to address - I'll blog about that later.
So, moms and dads - no matter how educated and informed we become on Asperger's and the appropriate interventions - the most important thing that we should rely on is our instincts.
Remember - DIFFERENT IS BEAUTIFUL!!
Then, the inner struggle started...Should I go speak with the mom and tell her that my daughter is an Aspie? Should I try to get her into the car with a girl I know has been kind to her? Or, do I just let her go and trust that she'll be able to handle it? This was a lose-lose situation. If I spoke with the mother, she might feel obligated to "baby" my daughter, which would make her feel uncomfortable. If I didn't speak with her, my daughter's needs might not be met. I opted not to say anything - I reasoned that the teacher was there and he's very informed on my daughter's disorder. I repeatedly reminded her not to wander away from the group, and to try to have a conversation with the other girls. This turned out to be the wrong decision - OF COURSE! One of the comorbid conditions that my daughter has is a speed processing delay, which means that it takes her a bit longer to process information and get it down on paper. She also gets hyper-focused - especially in hands-on museums. This field trip included an assignment, where the students were required to answer questions about specific exhibits on a form, to be turned in on Monday. Well - the other girls were rushing through each exhibit, with my daughter trailing behind. She couldn't get the information that she needed to complete her assignments, and more distressing to her, she didn't get to touch any of the exhibits. When she tried to tell the other girls, a couple of them got snarky and told her that was on her and it was her problem. I always assume that other children will show kindness to my daughter, and I'm always disappointed that they don't. On a side note - this is why children and educators MUST be educated on autism and Apserger's. Maybe with knowledge will come compassion and tolerance. I can't tell you the number of times that my daughter has been mistreated by a teacher or other students. It's no wonder that she's non-verbal in these situations.
Ugh! I should have followed my instincts. I should have taken the mother aside and told her about my daughter being an Aspie and told her that she might need a little extra encouragement or time to complete her assignment and look at each exhibit. Better yet, I should have just gone on the field trip with her. It's so hard to find the balance between being my daughter's advocate and encouraging independence. I know that I can't be at her side at all times and I think that she enjoys going off on her own once in a while. And no matter what happens, she's always excited about field trips and school activities and is eager to participate. She has amazing resilience. So - my lesson learned for today? Follow my freaking instincts. If I come across as over-protective, so be it! When I asked my daughter how she felt deep inside about the experience, she said "I didn't have an experience! And deep down I just feel aggravated". She wasn't aggravated at the mean girls, she was aggravated that she didn't get to fully participate in the activities. I promised her that I'll take her back to the museum for the entire day in the Summer so that she can touch every exhibit and spend as much time on each as she likes.
When I speak with my daughter about these types of experiences, she doesn't seem to have any lasting emotional distress over them, but I feel like each experience is a brick that goes on the wall that she's slowly building around herself. On this note, I'll quickly say that for these reasons, it's so important for girls with Asperger's, especially adolescents to have access to quality programs that include other girls with the same or similar disorders. There are no gender specific programs in our area, which is something that I intend to address - I'll blog about that later.
So, moms and dads - no matter how educated and informed we become on Asperger's and the appropriate interventions - the most important thing that we should rely on is our instincts.
Remember - DIFFERENT IS BEAUTIFUL!!
Thursday, April 15, 2010
April 15, 2010 - MUST READ
I'm reading a great book right now. It's called Growing Up on the Spectrum: A Guide to Life, Love, and Learning for Teens and Young Adults with Autism and Asperger's. It's very easy to read and has great practical solutions to a variety of issues for parents and educators. I highly recommend it for parents like myself who have a pre-teen - resources and traditional solutions start to lose their mojo at this point - so it's great to have suggestions that are age appropriate.
Happy reading and Remember - DIFFERENT IS BEAUTIFUL!!
Happy reading and Remember - DIFFERENT IS BEAUTIFUL!!
Missing Girl with Asperger's Found
Earlier this week searchers found an 11 year-old girl with Asperger's who had been missing in Florida. She's a "nature nut" and had wandered into the swamp on some sort of adventure. Thankfully, after a three day search, she was found safe deep in the treacherous waters of the Florida swamplands. This is a reminder that while our loved ones are "high functioning", they can often wander into very dangerous situations. I've posted a link to the article detailing the ordeal in the Articles section if you'd like to read more.
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