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.
Tuesday, April 13, 2010
Resource - Webpage
Your Little Professor is a website dedicated to providing information and resources for children with Aspergers. There's a ton of information on everything from eating habits to sleep patterns. As with all information, it's not gospel - I found several interesting points that I'd like to research further. I hope it's helpful.
Click here for more info:
Click here for more info:
April 13, 2010 - CO-PILOT
I think of myself as my daughter's co-pilot - her navigation system. She often finds herself in uncharted waters, and while she's getting better she still has trouble navigating those blurry middle school social waters.
We had an incident today that really began last week. My daughter tried to enter into a conversation that some other children were having about rap music. She thought about it first and really wanted to join the conversation, so she decided to chime in. Unfortunately, what she said was "I hate rap music". And when the conversation turned to Lil' Wayne, a rapper who was recently imprisoned on gun charges she asked "Didn't he just go to prison?" - When they answered yes, she said, "well, doesn't that make him a criminal?" Ok, maybe to me and to you this is a perfectly acceptable opinion and question, however, the other children were offended because they're big fans of rap music and Lil' Wayne. She just didn't recognize the change in body language towards her when she made the initial statement, so didn't understand it might be better to back off that approach to rap music in that particular conversation.
Then today, one of the girls from the first conversation confronted my daughter by asking her why she hates black people. My daughter was confused, and told her that she doesn't hate black people. The girl then told her that if she hates rap music, she hates black people. My daughter then told her that that was the "stupidest thing she'd ever heard". As you can imagine, that didn't go over well and things escalated from there. My daughter kept saying "you're not making any sense!" Because she's literal, some insults that aren't direct kind of go over her head. The girl came out of her chair and stood over my daughter's face while confronting her, yet when I asked her if the other girl was aggressive, she said no. I would interpret someone coming out of their chair and getting in my face as aggressive - but not someone with Asperger's. The whole incident was more confusing than scary because she didn't understand the initial confrontation.
On the way home from school, while we were talking about the incident my daughter became increasingly upset and began to cry because she was hurt and confused. Come to find out the girl also asked her why she hates people. My daughter was completely incredulous. I tried to explain to her that her confusion about the situation and her response were part of her disorder and that it's harder for her to understand what people are thinking/saying. For the first time she said that she hates having Asperger's and wished that she didn't have it. She also acknowledged that she would have it for the rest of her life and that there's nothing that we can do to change that fact. I told her that we can change it - trying to explain to her that with treatment and hard work, she can do just fine - that she'll have to think things through a bit more, but otherwise, she would be ok. She cut me off, saying that there is no cure.
Ugh!! What do I say? I told her that the other kids don't understand that she has Asperger's - that they don't understand her way of communicating. Then I asked her if she'd like for me to speak with students to explain to them what Asperger's and autism mean to students like her. I'd never thought to do this because I thought she'd rather other students not know. But as usual, she surprised me by saying that she'd like me to speak with her class if it would make things easier for her. WOW!
So, now I'm off to research the best way to educate middle school children about Asperger's and autism. This is something that should happen in all schools. With the rate of diagnosis rising at an alarming rate, all students are going to come into contact with individuals with differences. Tolerance and compassion should be part of the education vernacular, anyway.
Remember...DIFFERENT IS BEAUTIFUL!!
We had an incident today that really began last week. My daughter tried to enter into a conversation that some other children were having about rap music. She thought about it first and really wanted to join the conversation, so she decided to chime in. Unfortunately, what she said was "I hate rap music". And when the conversation turned to Lil' Wayne, a rapper who was recently imprisoned on gun charges she asked "Didn't he just go to prison?" - When they answered yes, she said, "well, doesn't that make him a criminal?" Ok, maybe to me and to you this is a perfectly acceptable opinion and question, however, the other children were offended because they're big fans of rap music and Lil' Wayne. She just didn't recognize the change in body language towards her when she made the initial statement, so didn't understand it might be better to back off that approach to rap music in that particular conversation.
Then today, one of the girls from the first conversation confronted my daughter by asking her why she hates black people. My daughter was confused, and told her that she doesn't hate black people. The girl then told her that if she hates rap music, she hates black people. My daughter then told her that that was the "stupidest thing she'd ever heard". As you can imagine, that didn't go over well and things escalated from there. My daughter kept saying "you're not making any sense!" Because she's literal, some insults that aren't direct kind of go over her head. The girl came out of her chair and stood over my daughter's face while confronting her, yet when I asked her if the other girl was aggressive, she said no. I would interpret someone coming out of their chair and getting in my face as aggressive - but not someone with Asperger's. The whole incident was more confusing than scary because she didn't understand the initial confrontation.
On the way home from school, while we were talking about the incident my daughter became increasingly upset and began to cry because she was hurt and confused. Come to find out the girl also asked her why she hates people. My daughter was completely incredulous. I tried to explain to her that her confusion about the situation and her response were part of her disorder and that it's harder for her to understand what people are thinking/saying. For the first time she said that she hates having Asperger's and wished that she didn't have it. She also acknowledged that she would have it for the rest of her life and that there's nothing that we can do to change that fact. I told her that we can change it - trying to explain to her that with treatment and hard work, she can do just fine - that she'll have to think things through a bit more, but otherwise, she would be ok. She cut me off, saying that there is no cure.
Ugh!! What do I say? I told her that the other kids don't understand that she has Asperger's - that they don't understand her way of communicating. Then I asked her if she'd like for me to speak with students to explain to them what Asperger's and autism mean to students like her. I'd never thought to do this because I thought she'd rather other students not know. But as usual, she surprised me by saying that she'd like me to speak with her class if it would make things easier for her. WOW!
So, now I'm off to research the best way to educate middle school children about Asperger's and autism. This is something that should happen in all schools. With the rate of diagnosis rising at an alarming rate, all students are going to come into contact with individuals with differences. Tolerance and compassion should be part of the education vernacular, anyway.
Remember...DIFFERENT IS BEAUTIFUL!!
Sunday, April 11, 2010
April 11, 2010 - VOTE FOR ALEX
I recently met a family with a son with Asperger's Syndrome who is truly inspiring to me. Their son, who is now 19, was diagnosed at age 6. With lots of interventions and appropriate resources - not to mention the love of his parents and siblings - this young man is now attending Cal Arts. He and his friends have been working on animated videos for entrance in a contest for PDA's for International Disasters. I'm attaching a link for his video that has made the FINALS!! Please vote and leave a comment as well, if you'd like. He's a great success story and is proof that while the road might be rocky, the journey is worth the work.
VOTE HERE!
Remember - DIFFERENT IS BEAUTIFUL!!
VOTE HERE!
Remember - DIFFERENT IS BEAUTIFUL!!
Saturday, April 10, 2010
April 10, 2010 - SIGH OF RELIEF
We went to a barbecue last night where there were mostly adults in attendance. I was a little unsure how my daughter would interact with other guests, because she didn't know most of them. I was amazed by her yet again. She participated in conversations and laughed at jokes and funny stories - she even told a couple herself. She did speak a little louder than necessary and got a bit hyper-excited a couple of times. She also interrupted others occasionally, but she tried really hard. I could tell she was making a concerted effort to wait her turn to speak. After the week we had, it was a blessing to watch her - it felt great to be able to sit back and enjoy myself without worrying about her.
Our hard work pays off sometimes - most of the time, actually.
Remember...DIFFERENT IS BEAUTIFUL!!
Our hard work pays off sometimes - most of the time, actually.
Remember...DIFFERENT IS BEAUTIFUL!!
Thursday, April 8, 2010
April 8, 2010 - TWIRLING
My daughter likes to twirl - turn around and around in circles until she's dizzy. Then she keeps going. The therapist says that she's self-regulating. I know this. I KNOW!!! Stress creates a need for her to do this. If she wasn't allowed to self-regulate, she'd feel infinitely more anxious. I KNOW THIS, TOO! So why do I feel so sad that she does it? Is it because I know that when someone outside our circle sees her, they'll judge her as impaired? Is it because I'm afraid that someone will make fun of her or hurt her because of her differences? Probably, yes to both questions. For all of my preaching that "DIFFERENT IS BEAUTIFUL", I still feel sad and scared for her. I want so much for her to have a productive, happy and satisfying life. I believe that this will happen, it's me who has to change my view of what that means for her. Me - I have to accept that her life is her own, and that she'll define her own successes. It's my job to protect her whenever possible, to teach her life lessons that might not be as obvious to her as other girls, and to make her feel safe to be who she is.
I'm not a perfect parent. I still feel grief and guilt over my daughter's disorder. Every parent wants the perfect child - of course none of us get one (and if we think we have one - we're delusional!). I love my daughter - I love her with all of my heart and soul - but I'm afraid for her and I'm afraid that in addition to all of the barriers that she'll undoubtedly face, I'll fail her as well, because I can't let go of my pre-conceived idea of what she should be.
But, when I strip away my own ego and see her twirling through an untainted lens, that twirling girl, with her hair whipping out around her is the most beautiful thing in the world.
I have to remember...DIFFERENT IS BEAUTIFUL!!
I'm not a perfect parent. I still feel grief and guilt over my daughter's disorder. Every parent wants the perfect child - of course none of us get one (and if we think we have one - we're delusional!). I love my daughter - I love her with all of my heart and soul - but I'm afraid for her and I'm afraid that in addition to all of the barriers that she'll undoubtedly face, I'll fail her as well, because I can't let go of my pre-conceived idea of what she should be.
But, when I strip away my own ego and see her twirling through an untainted lens, that twirling girl, with her hair whipping out around her is the most beautiful thing in the world.
I have to remember...DIFFERENT IS BEAUTIFUL!!
VIDEO
I've posted an article and video of surfer Clay Marzo, who is the subject of the Rolling Stone article that I referenced yesterday. Take a look. Oh, by the way - the lead in sucks! My daughter was truly offended by it. They kept referring to his Asperger's as a "medical condition" - hahaha!!! The rest is great, definately worth watching.
Wednesday, April 7, 2010
APRIL IS AUTISM AWARENESS MONTH
April is Austism Awareness Month - no better time to learn more about Asperger's and the autism spectrum. I've added several links to articles which have an enormous amount of information. Statistics and resources continue to fluxuate - continued education is key to our effectiveness as advocates for our loved ones with Asperger's.
Remember - DIFFERENT IS BEAUTIFUL!!
Remember - DIFFERENT IS BEAUTIFUL!!
ROLLING STONE ARTICLE
There's a fantastic article in Rolling Stone's latest issue detailing the life and limitations of a surfer with Asperger's. It shows how the obsessive presentation in Aspies can give them great accomplishment and joy, but also shows that when those accomplishments lead to expectations from others - the inability to navigate social and competitive norms can create overwhelming anxiety. Here's the citation:
Solotaroff, Paul. "The Surfing Savant." Rolling Stone 15 Apr. 2010: 54-61. Print
Solotaroff, Paul. "The Surfing Savant." Rolling Stone 15 Apr. 2010: 54-61. Print
Resource for Girls 10-18 Years Old
Drama & Social Skills Workshops for Girls (10-18 yrs) - Sacramento Area
A series of drama and social skills workshops have been organized for girls! The workshops are being presented by Amelia Davies and John Stamm, who are well known by FEAT parents for their fun & innovative drama/social skills classes that have helped many young folks to shine in this new form of self expression.
These workshops are being offered at this time for girls only, ages 10-18, who may or may not have an identified disability. It is a fantastic opportunity for our daughters and students to practice peer interaction in a playful and comfortable manner.
The class needs a minimum of eight students to actually take place. We currently have four interested in attending. Please pass this along to anyone who you think might be interested or for more information, please email girlwithaspergers@gmail.com.
A series of drama and social skills workshops have been organized for girls! The workshops are being presented by Amelia Davies and John Stamm, who are well known by FEAT parents for their fun & innovative drama/social skills classes that have helped many young folks to shine in this new form of self expression.
These workshops are being offered at this time for girls only, ages 10-18, who may or may not have an identified disability. It is a fantastic opportunity for our daughters and students to practice peer interaction in a playful and comfortable manner.
The class needs a minimum of eight students to actually take place. We currently have four interested in attending. Please pass this along to anyone who you think might be interested or for more information, please email girlwithaspergers@gmail.com.
Tuesday, April 6, 2010
April 6, 2010 - FULL-BLOWN MELTDOWN
Yesterday was a good day. My daughter made it out the door and to school without incident, she had a healthy, balanced dinner - and best of all - Girl Scouts. This particular meeting was especially important because the girls were able to bring their pets to the meeting. My daughter was chomping at the bit to get going. The meeting went well, the dog only slightly misbehaved and we were home early enough to get some homework in.
Then - a trauma. My daughter was sitting on the couch with her pug puppy on her lap, when the other dog (also a pug) jumped up and tried to get my daughter's attention. The dogs began to seriously attack each other. That was the first time that the dogs had ever behaved that way, so she tried to break them apart. I was on the phone at the time and tried to stay on the phone and pull them apart, unsuccessfully. When I pulled at the dog, I also pushed at my daughter, trying to separate them and I accidentally pushed on her throat instead of her chest. My only goal was to separate the dogs and to get them away from her, but in her mind the chaos of the dogs attacking each other (one of them bit her hand), and me pushing her was too much. She kept asking me why I'd pushed her throat. I kept telling her it was an accident, but she couldn't register it.
This led to hysteria and hyerventilation, to the point where I thought she was going to pass out. The skirmish only lasted a couple of minutes, but the aftermath lasted for the rest of the night. My goal was to get her calm enough that she could get her breathing regulated. I tried sitting and talking with her very calmly, putting her hand on my chest so that she could feel my calm breathing pattern - I just couldn't get her calmed down. Everytime she remembered what happened, she'd get upset all over again. I kept telling her that the dogs were fine, that she was safe and reassured her that I was there for her. Finally, after an hour or so, she calmed down, though she was completely shut down afterward. She emotionally checked out - which is common for her after a full-blown meltdown. It's kind of a blank stare - she's responsive, but not fully engaged. It generally takes her the rest of the day to recover, which could mean missing school. It's best to give her time to veg out or sleep for a time to recharge her batteries.
These meltdowns are always scary and it's painful to see her in so much pain and turmoil - especially when I know that most people would just process the incident, and might be shaken, but not completely knocked out by it. As her parent, I want to cry right along with her and beg her to be ok, to just stop - it all seems so surreal when its happening. Ultimately, these incidents are rare these days - but they're a reminder that we're not out of the woods just yet. Each one can be a lesson, if we take a careful look.
Remember...DIFFERENT IS BEAUTIFUL.
Then - a trauma. My daughter was sitting on the couch with her pug puppy on her lap, when the other dog (also a pug) jumped up and tried to get my daughter's attention. The dogs began to seriously attack each other. That was the first time that the dogs had ever behaved that way, so she tried to break them apart. I was on the phone at the time and tried to stay on the phone and pull them apart, unsuccessfully. When I pulled at the dog, I also pushed at my daughter, trying to separate them and I accidentally pushed on her throat instead of her chest. My only goal was to separate the dogs and to get them away from her, but in her mind the chaos of the dogs attacking each other (one of them bit her hand), and me pushing her was too much. She kept asking me why I'd pushed her throat. I kept telling her it was an accident, but she couldn't register it.
This led to hysteria and hyerventilation, to the point where I thought she was going to pass out. The skirmish only lasted a couple of minutes, but the aftermath lasted for the rest of the night. My goal was to get her calm enough that she could get her breathing regulated. I tried sitting and talking with her very calmly, putting her hand on my chest so that she could feel my calm breathing pattern - I just couldn't get her calmed down. Everytime she remembered what happened, she'd get upset all over again. I kept telling her that the dogs were fine, that she was safe and reassured her that I was there for her. Finally, after an hour or so, she calmed down, though she was completely shut down afterward. She emotionally checked out - which is common for her after a full-blown meltdown. It's kind of a blank stare - she's responsive, but not fully engaged. It generally takes her the rest of the day to recover, which could mean missing school. It's best to give her time to veg out or sleep for a time to recharge her batteries.
These meltdowns are always scary and it's painful to see her in so much pain and turmoil - especially when I know that most people would just process the incident, and might be shaken, but not completely knocked out by it. As her parent, I want to cry right along with her and beg her to be ok, to just stop - it all seems so surreal when its happening. Ultimately, these incidents are rare these days - but they're a reminder that we're not out of the woods just yet. Each one can be a lesson, if we take a careful look.
Remember...DIFFERENT IS BEAUTIFUL.
Monday, April 5, 2010
April 5, 2010 - GETTING OUT THE DOOR
Getting out the door on time for school is always hit and miss for us. My daughter is NOT a morning person. She's nocturnal by nature and has trouble with quality sleep. That said, she's also quite the pill if she's rushed in the morning - she has to be eased into the day.
Our routine goes like this - I spend about 15 minutes waking her up. I try, then walk away, come back and try again, walk away - and then usually on the third try she's awake. I make sure that I ask her if she wants breakfast first thing (usually cereal) - and yes, I let her eat in bed during the week. After that she's awake and ready to start the day. Since she could care less about what she wears to school (other than comfort), I'll generally have her pick out what she's going to wear the night before or, I'll admit - I'll pick something out and lay it on the bed. She dresses (usually forgetting shoes), then I remind her of every detail - to brush her teeth, brush her hair, put her socks and shoes on - and all this time she's constantly distracted by something else, usually her animals (three dogs and a cat) and I'm re-directing her attention to the task at hand. After she's fed and dressed, it's on to the backpack - which by the way is ridiculously heavy - to make sure that she has all of her books, assignments and homework. She also has to have the book that she's reading with her at all times - so we have to make sure that it makes it into the backpack. Also, we have to make sure that she has her phone, her inhaler, a pencil and whatever chotsky that she's attached herself to at the time. After all of this we head towards the door, but then the "good-byes" and loves start with each of the animals. She has to pet and kiss each one - and then FINALLY, we're out the door, her backpack has to go in the truck of the car, not the backseat - and then fifty percent of the time something is forgotten and I run in to get whatever it is -and run back to the car - and we're off. Once at school I drop her off in front of the school and have to wait until she's in the school building before I can drive off. If I drive off before she's in the building, she'll call me and ask me why I drove off before I was supposed to. This really upsets her, so I wait the few seconds that it takes.
This probably sounds insane to most people, but it's a routine that works for us - and it certainly beats the morning tantrums that I experienced several times a week when I was working. Each family has to come up with their own routine - but I guarantee that once it's established, it will create a system of control that's manageable vs. the chaos that once ruled. Ultimately, my goal is to make sure that my daughter is a self-sufficient, regulated person on her own, but without the established routine, she seemed to flounder. Next up - letting her get out the door before she realizes that she doesn't have shoes on.
Remember - DIFFERENT IS BEAUTIFUL
Our routine goes like this - I spend about 15 minutes waking her up. I try, then walk away, come back and try again, walk away - and then usually on the third try she's awake. I make sure that I ask her if she wants breakfast first thing (usually cereal) - and yes, I let her eat in bed during the week. After that she's awake and ready to start the day. Since she could care less about what she wears to school (other than comfort), I'll generally have her pick out what she's going to wear the night before or, I'll admit - I'll pick something out and lay it on the bed. She dresses (usually forgetting shoes), then I remind her of every detail - to brush her teeth, brush her hair, put her socks and shoes on - and all this time she's constantly distracted by something else, usually her animals (three dogs and a cat) and I'm re-directing her attention to the task at hand. After she's fed and dressed, it's on to the backpack - which by the way is ridiculously heavy - to make sure that she has all of her books, assignments and homework. She also has to have the book that she's reading with her at all times - so we have to make sure that it makes it into the backpack. Also, we have to make sure that she has her phone, her inhaler, a pencil and whatever chotsky that she's attached herself to at the time. After all of this we head towards the door, but then the "good-byes" and loves start with each of the animals. She has to pet and kiss each one - and then FINALLY, we're out the door, her backpack has to go in the truck of the car, not the backseat - and then fifty percent of the time something is forgotten and I run in to get whatever it is -and run back to the car - and we're off. Once at school I drop her off in front of the school and have to wait until she's in the school building before I can drive off. If I drive off before she's in the building, she'll call me and ask me why I drove off before I was supposed to. This really upsets her, so I wait the few seconds that it takes.
This probably sounds insane to most people, but it's a routine that works for us - and it certainly beats the morning tantrums that I experienced several times a week when I was working. Each family has to come up with their own routine - but I guarantee that once it's established, it will create a system of control that's manageable vs. the chaos that once ruled. Ultimately, my goal is to make sure that my daughter is a self-sufficient, regulated person on her own, but without the established routine, she seemed to flounder. Next up - letting her get out the door before she realizes that she doesn't have shoes on.
Remember - DIFFERENT IS BEAUTIFUL
Sunday, April 4, 2010
April 4, 2010 - HAPPY EASTER!!
I love holidays - I love parties in general. I always go overboard, taking the time to decorate, set tables and plan games and activities. All of my daughters laugh at me - though they love it. And though they're older now - if they live in my house, the Easter Bunny leaves them a basket.
HOWEVER, for several years holidays were a scary proposition for us because they always ended in a huge tantrum by my daughter. From the time that she was four until she was ten or eleven, I don't think that there was a holiday that didn't end with me dragging her out kicking and screaming. To add to the stress, most of that time I also had to deal with my family thinking that she was spoiled and rude and that she somehow deserved it when another child hit her or the group ostracized her. All they saw was the end result, not the gradual building of anxiety that facilitated the tantrum. And I'll admit that for many years I didn't understand it either.
What I eventually learned about my daughter, even before her diagnosis of Asperger's, is - in those situations she was extremely over-stimulated. She couldn't handle the loud conversations, the loud laughter, the mix of people - all wanting to shake her hand or hug her at hello. She'd been attending big family parties since infancy, yet all of a sudden she couldn't handle it. She would start out well, but would soon start to act agitated, rejecting adult interaction (which made her seem "rude" to other adults and honestly, embarrassed me) and when I'd tell her to go play, she would ultimately end up in a skirmish with one of her cousins. Because she was crying and upset, I would try to quiet her down, which would make things worse because (and this is very important) I wasn't "hearing" her. She needed a voice, she needed to tell me what she felt and needed, but she didn't have the vocabulary to articulate that. She was just overwhelmed by anxiety and the tantrum would escalate to the point of my other daughter hurriedly grabbing all of our things and me physically dragging her out. Once she was away from the situation and calmed down, she would immediately become very remorseful, apologizing over and over. She didn't understand any better than I did why she behaved in such a way.
At first I started declining invitations, we would make plans for our family alone at holidays, or miss birthday parties - but my family, including my daughter, missed the big crazy family get-togethers. So, we came up with a trial plan that included her Nintendo DS and her earbuds. If she could make it through the hellos, she could sit somewhere and play her DS with her earphones in. And it worked! She wanted to be around others, and was able to be without the noise causing her anxiety. I also started making sure that there was a room where she could go to be alone for a while until she felt calm enough to re-join the party. This headed off the tantrum because she was self-aware enough to recognize when she was feeling anxious. Gradually she would join the other children, and move back and forth between her spot with the DS and the playroom. Once we had the diagnosis and I started researching and learning about her disorder, I understood that the touching, noise, smells and other stimuli were just too much without some sort of accommodations in place to make her comfortable. Other examples are no hugging without asking first (opening your arms and asking "can I have a hug" has become a staple at our get-togethers - and there can't be resentment if the answer is "no") and making sure that there's a food that she likes available so that she doesn't feel the pressure of trying to eat something that she can't stand. Another solution, which isn't always an option, is outdoor functions. The open space seems to really alleviate her anxiety. The weather was so good this year that we were able to do Thanksgiving in the backyard - this was a first for all of us, so it was fun for everyone.
Now, we host most of our family holiday get togethers. Not because of my daughter's needs, but because we love it. She loves the traditions (God help me if I try to change things around - Aspies are very regimented), loves the creativity of decorating and truly enjoys her family in her own way. Today we're hosting twenty-one family and friends - something that would have been impossible a couple of years ago. My daughter has planned all of the activities and plans on handling face painting on her own.
All of this has come from trial and error. It took us awhile to figure out what works and what doesn't and sometimes there are still tears and frustration, but the way that we handle the breakdowns and her recovery and ability to rejoin the group has become manageable. To add to the success of this part of our story - the fact that our family and inner circle has come on board with my daughter's disorder and they understand and respect her limitations - but most importantly they all love her just as she is.
So, Happy Easter and remember...DIFFERENT IS BEAUTIFUL!!
HOWEVER, for several years holidays were a scary proposition for us because they always ended in a huge tantrum by my daughter. From the time that she was four until she was ten or eleven, I don't think that there was a holiday that didn't end with me dragging her out kicking and screaming. To add to the stress, most of that time I also had to deal with my family thinking that she was spoiled and rude and that she somehow deserved it when another child hit her or the group ostracized her. All they saw was the end result, not the gradual building of anxiety that facilitated the tantrum. And I'll admit that for many years I didn't understand it either.
What I eventually learned about my daughter, even before her diagnosis of Asperger's, is - in those situations she was extremely over-stimulated. She couldn't handle the loud conversations, the loud laughter, the mix of people - all wanting to shake her hand or hug her at hello. She'd been attending big family parties since infancy, yet all of a sudden she couldn't handle it. She would start out well, but would soon start to act agitated, rejecting adult interaction (which made her seem "rude" to other adults and honestly, embarrassed me) and when I'd tell her to go play, she would ultimately end up in a skirmish with one of her cousins. Because she was crying and upset, I would try to quiet her down, which would make things worse because (and this is very important) I wasn't "hearing" her. She needed a voice, she needed to tell me what she felt and needed, but she didn't have the vocabulary to articulate that. She was just overwhelmed by anxiety and the tantrum would escalate to the point of my other daughter hurriedly grabbing all of our things and me physically dragging her out. Once she was away from the situation and calmed down, she would immediately become very remorseful, apologizing over and over. She didn't understand any better than I did why she behaved in such a way.
At first I started declining invitations, we would make plans for our family alone at holidays, or miss birthday parties - but my family, including my daughter, missed the big crazy family get-togethers. So, we came up with a trial plan that included her Nintendo DS and her earbuds. If she could make it through the hellos, she could sit somewhere and play her DS with her earphones in. And it worked! She wanted to be around others, and was able to be without the noise causing her anxiety. I also started making sure that there was a room where she could go to be alone for a while until she felt calm enough to re-join the party. This headed off the tantrum because she was self-aware enough to recognize when she was feeling anxious. Gradually she would join the other children, and move back and forth between her spot with the DS and the playroom. Once we had the diagnosis and I started researching and learning about her disorder, I understood that the touching, noise, smells and other stimuli were just too much without some sort of accommodations in place to make her comfortable. Other examples are no hugging without asking first (opening your arms and asking "can I have a hug" has become a staple at our get-togethers - and there can't be resentment if the answer is "no") and making sure that there's a food that she likes available so that she doesn't feel the pressure of trying to eat something that she can't stand. Another solution, which isn't always an option, is outdoor functions. The open space seems to really alleviate her anxiety. The weather was so good this year that we were able to do Thanksgiving in the backyard - this was a first for all of us, so it was fun for everyone.
Now, we host most of our family holiday get togethers. Not because of my daughter's needs, but because we love it. She loves the traditions (God help me if I try to change things around - Aspies are very regimented), loves the creativity of decorating and truly enjoys her family in her own way. Today we're hosting twenty-one family and friends - something that would have been impossible a couple of years ago. My daughter has planned all of the activities and plans on handling face painting on her own.
All of this has come from trial and error. It took us awhile to figure out what works and what doesn't and sometimes there are still tears and frustration, but the way that we handle the breakdowns and her recovery and ability to rejoin the group has become manageable. To add to the success of this part of our story - the fact that our family and inner circle has come on board with my daughter's disorder and they understand and respect her limitations - but most importantly they all love her just as she is.
So, Happy Easter and remember...DIFFERENT IS BEAUTIFUL!!
Friday, April 2, 2010
April 2, 2010 - IT'S OK!
I had the opportunity to go on a lovely trip to Half Moon Bay with my sister yesterday. It was a spur of the moment invitation and I had to leave right away to make a dinner that my sister was hosting. I really wanted to go - the thought of a hotel room on the beach, a bon fire, adult conversation and shopping was irresistible. But there were two glitches - the first, relatively easy to solve was that I'd promised my daughter that I'd take her to the zoo to see the new giraffe exhibit. My sister suggested that I just reschedule the zoo trip - my response -"yeah, it doesn't really work that way." I'd said that we would go and short of losing a limb, there was no rationalization that could get me out of it. So we went to the zoo early in the day, had a lovely time and got home in time for me to leave on my trip.
The second issue - not so easy for me to resolve. I was scared to death to leave my daughter overnight. What if she had a tantrum and my older daughter, who was staying with her didn't know what to do? What if my older daughter couldn't get her to eat? What if she couldn't sleep - would she know what to do? What if something that she had to have got lost? On and on and on I went with the "what ifs". But, I decided that I would go on the trip. I threw some things in a bag and started to head out the door, reciting instructions over and over again - I'm sure driving anyone within earshot insane. Then my daughter said "mom, why is it so hard for you to go have fun?" I felt like the world had been lifted off my shoulders (almost). Six months ago she would have been on the floor hysterical at the thought of me leaving her for the night, let alone for almost two days.
I still received a phone call at 1:30 am to let me know that she was going to bed and another the next afternoon to check in and see what time I would be home - and I could hear some anxiety in her voice - but she was sure to say "it's ok, mom - I'm ok". And you know what? It is - it's ok.
Remember - DIFFERENT IS BEAUTIFUL!!
The second issue - not so easy for me to resolve. I was scared to death to leave my daughter overnight. What if she had a tantrum and my older daughter, who was staying with her didn't know what to do? What if my older daughter couldn't get her to eat? What if she couldn't sleep - would she know what to do? What if something that she had to have got lost? On and on and on I went with the "what ifs". But, I decided that I would go on the trip. I threw some things in a bag and started to head out the door, reciting instructions over and over again - I'm sure driving anyone within earshot insane. Then my daughter said "mom, why is it so hard for you to go have fun?" I felt like the world had been lifted off my shoulders (almost). Six months ago she would have been on the floor hysterical at the thought of me leaving her for the night, let alone for almost two days.
I still received a phone call at 1:30 am to let me know that she was going to bed and another the next afternoon to check in and see what time I would be home - and I could hear some anxiety in her voice - but she was sure to say "it's ok, mom - I'm ok". And you know what? It is - it's ok.
Remember - DIFFERENT IS BEAUTIFUL!!
Thursday, April 1, 2010
Helpful Tips
SLEEP -
My daughter often has trouble getting sufficient rest at night, even with an appropriate number of hours of sleep. This isn't uncommon for children and indviduals with ASD. Her therapist suggested Melatonin before bedtime to help with the quality of her rest. After speaking with her physician, we started giving her one 300 mcg tablet about 10 minutes before bedtime and it's worked wonderfully. This is a dietary, natural supplement which is fast acting and non-addictive. Melatonin is relatively inexpensive and can be found at local WalMarts, drug stores and other vitamin and supplement shops.
My daughter often has trouble getting sufficient rest at night, even with an appropriate number of hours of sleep. This isn't uncommon for children and indviduals with ASD. Her therapist suggested Melatonin before bedtime to help with the quality of her rest. After speaking with her physician, we started giving her one 300 mcg tablet about 10 minutes before bedtime and it's worked wonderfully. This is a dietary, natural supplement which is fast acting and non-addictive. Melatonin is relatively inexpensive and can be found at local WalMarts, drug stores and other vitamin and supplement shops.
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