I hate you Asperger's. I hate you with all of my being. You rob the soul, the joy, the comfort from those that you descend upon. You isolate. You frighten. You deplete hope and optimism. You annihilate success. You emasculate triumph. You trap in an envelope of darkness.
I just need a glimmer - a glimmer will sustain me. A glimmer of hope. A glimmer of creativity. A glimmer of joy. A glimmer of a future that will be...anything other than what I fear it will be.
I need time. I need space. I need strength. I need compassion. I need understanding. I need support. I need companionship. I need love. I need abundance.
Asperger's I hate you! Daughter, I love you. I love you, I love you, I love you.
Friday, December 31, 2010
Friday, November 19, 2010
November 19, 2010 - Parenthood
I spoke earlier about my love of the show Parenthood - there's a great storyline that includes parents and extended family dealing with a child with Asperger's and the trials and successes that they experience. It's a great show and pulls at my heartstrings every time Max (the child with Asperger's) experiences a setback or an achievement. It shows that there are lots of parents out there struggling with the same issues and more importantly shows them figuring out what works for the child and the family. Please watch - Tuesday nights at 10:00 on NBC. Also, I've included a link to the show's website where an expert on Asperger's discusses the issues outlined after each episode.
Remember - DIFFERENT IS BEAUTIFUL!
Remember - DIFFERENT IS BEAUTIFUL!
Friday, October 22, 2010
October 22, 2010 - Victory!!
The one thing that I'm certain about is that every Aspie out there has a specific gift. It's probably apprarent to them, but it must be recognized by those around them. It must be seen as a victory that they can claim all their own. My daughter has many gifts - one of them is the ability to capture facial expression and movement in the painting of an abstract. It's beautiful to see. Everytime I see one of her paintings I wonder if it's because she doesn't always understand what she's seeing in other people's facial expressions and has a need to reproduce it. Or maybe it's an outlet for her to express her own emotions, which are often hidden behind a blank facade. Whatever the reason, I recognize her gift and put it here for all of you to see.
Remember - DIFFERENT IS BEAUTIFUL!!
Thursday, October 21, 2010
October 21, 2010 - Exhaustion SUCKS!!
Ok, first I want to start of by bragging a bit about a couple of victories that my daughter had earlier this month, that I haven't mentioned yet. First - she exhibited work at the Sacramento Arts Festival, which is a huge art fair held at our convention center. There are artists and craftsmen from all over the country exhibiting there, and our school district exhibits artwork from each of its schools, by grade and genre and that work is judged by a panel. My daughter won first prize for an acrylic that she submitted. It's my favorite of her work, so it was wonderful to see it recognized. She got a huge blue ribbon and a $25 cash prize which she cashed and spent on more canvas and paints. I felt good about that.
Later that week, she was named Student of the Month for academic achievement! And she ran for Student Class President! Considering that two years ago she was completely school phobic and on home hospital and that last year, she made it through just by the grace of God - this is huge. HUGE!! Her teachers and principal were concerned about her achievements last year, but everyday that she was there was a victory for her. Everyone is completely supportive this year and relishing in her achievements.
This week, however I've seen a backslide on the part of her teachers. I think because she's been doing so well, they've assumed that she's cured of her Asperger's and therefore they no longer need to honor her IEP accommodations. She was given detention everyday this week, in one case for work that she'd completed, but handed in late - it was due today and she handed it in today, but didn't have it available when she arrived in class. My daughter's IEP includes an additional time accommodation - which in my opinion is the most important accommodation there is, except for NO DETENTION!
This kind of backsliding has me scared to death. My daughter is sitting behind me, it's almost 8:30 and she's struggling through homework. I hate harrassing her to get it done, she gets upset and my older daughter has to be on call for math tutoring on a regular basis. It's exhausting for the entire household. I sent each of her teachers and her principal an email outlining my concerns, the key will be whether or not they respond. I'm so, so tired and I know my daughter is exhausted. I don't think that her teachers realize that homework consumes about four hours a night, every night - that leaves no time for family time, no going out to dinner, no going to family functions - nothing on weekdays. It sucks! The one positive - she's doing it! My daughter is sitting there working through it, no major tantrums, just getting it done. She's a sav!
Remember - DIFFERENT IS BEAUTIFUL!! (And exhausting)
Later that week, she was named Student of the Month for academic achievement! And she ran for Student Class President! Considering that two years ago she was completely school phobic and on home hospital and that last year, she made it through just by the grace of God - this is huge. HUGE!! Her teachers and principal were concerned about her achievements last year, but everyday that she was there was a victory for her. Everyone is completely supportive this year and relishing in her achievements.
This week, however I've seen a backslide on the part of her teachers. I think because she's been doing so well, they've assumed that she's cured of her Asperger's and therefore they no longer need to honor her IEP accommodations. She was given detention everyday this week, in one case for work that she'd completed, but handed in late - it was due today and she handed it in today, but didn't have it available when she arrived in class. My daughter's IEP includes an additional time accommodation - which in my opinion is the most important accommodation there is, except for NO DETENTION!
This kind of backsliding has me scared to death. My daughter is sitting behind me, it's almost 8:30 and she's struggling through homework. I hate harrassing her to get it done, she gets upset and my older daughter has to be on call for math tutoring on a regular basis. It's exhausting for the entire household. I sent each of her teachers and her principal an email outlining my concerns, the key will be whether or not they respond. I'm so, so tired and I know my daughter is exhausted. I don't think that her teachers realize that homework consumes about four hours a night, every night - that leaves no time for family time, no going out to dinner, no going to family functions - nothing on weekdays. It sucks! The one positive - she's doing it! My daughter is sitting there working through it, no major tantrums, just getting it done. She's a sav!
Remember - DIFFERENT IS BEAUTIFUL!! (And exhausting)
Thursday, September 23, 2010
September 23, 2010 - What to do...
I have my daughter's first 504 meeting coming up next week. All of her teachers and the rest of the special education team will be there. I've fought tooth and nail to get her services over the last few years and I suddenly find myself in the position where I'm thinking about holding back on certain services.
I've spoken about the huge improvement in my daughter's performance and general attitude at school. This has led me to re-think some of the services that she receives, specifically speech therapy. Last year this service was immensely helpful because the leading specialist on social pragmatics and autism/Asperger's was on staff at my daughter's school. This is one of the reasons that I chose her school for her. Due to budget cuts this therapist was let go and a new person was hired. The new person is just out of college and this is her first year of providing services in a school setting. This does not make me comfortable considering the lack of expertise on autism and more specifically, Asperger's in the rest of the special education team at the school.
Here's my thinking - my daughter has drama class first period, which she loves. This class gives her the opportunity to participate in small group activities, perform in front of her class and through monologues and such, learn appropriate intonations and expression. Speech therapy is a pull-out service, which means once or twice a week, she's pulled from class to participate in services. I think leaving her in class is a more productive and helpful tool in practicing social pragmatics. Also, I don't want her pulled from her other core classes because I don't want her falling behind in those subjects, so I told my daughter not to attend speech therapy until I could get a hold of the principal to discuss this with her. No surprise - she hasn't returned my phone calls.
The speech therapist wasn't thrilled with my decision and called me to ask me about it. I explained my reasoning behind my decision, but she persisted that she felt she could be helpful to my daughter in other areas. I'm willing to consider this, but refused to change my mind regarding the pull-out services.
I feel good about this decision, though I'm certain that I'll get grief about it from the rest of the team during our 504 meeting. The goal for the meeting from my perspective is to take a step back and give my daughter the opportunity to succeed on her own with an analysis of support that she may need now, not based on her needs from last year - that's always the problem with services, they're always a step behind or a year too late. I'm sure that she'll need more supports in place as the year progresses and her work load increases. For now, it's going to be all about walking the fine line of reining in the special ed team without burning any bridges or giving the impression that my daughter doesn't need services. Here we go again - another year of fun, fun, fun.
Remember - DIFFERENT IS BEAUTIFUL!!
I've spoken about the huge improvement in my daughter's performance and general attitude at school. This has led me to re-think some of the services that she receives, specifically speech therapy. Last year this service was immensely helpful because the leading specialist on social pragmatics and autism/Asperger's was on staff at my daughter's school. This is one of the reasons that I chose her school for her. Due to budget cuts this therapist was let go and a new person was hired. The new person is just out of college and this is her first year of providing services in a school setting. This does not make me comfortable considering the lack of expertise on autism and more specifically, Asperger's in the rest of the special education team at the school.
Here's my thinking - my daughter has drama class first period, which she loves. This class gives her the opportunity to participate in small group activities, perform in front of her class and through monologues and such, learn appropriate intonations and expression. Speech therapy is a pull-out service, which means once or twice a week, she's pulled from class to participate in services. I think leaving her in class is a more productive and helpful tool in practicing social pragmatics. Also, I don't want her pulled from her other core classes because I don't want her falling behind in those subjects, so I told my daughter not to attend speech therapy until I could get a hold of the principal to discuss this with her. No surprise - she hasn't returned my phone calls.
The speech therapist wasn't thrilled with my decision and called me to ask me about it. I explained my reasoning behind my decision, but she persisted that she felt she could be helpful to my daughter in other areas. I'm willing to consider this, but refused to change my mind regarding the pull-out services.
I feel good about this decision, though I'm certain that I'll get grief about it from the rest of the team during our 504 meeting. The goal for the meeting from my perspective is to take a step back and give my daughter the opportunity to succeed on her own with an analysis of support that she may need now, not based on her needs from last year - that's always the problem with services, they're always a step behind or a year too late. I'm sure that she'll need more supports in place as the year progresses and her work load increases. For now, it's going to be all about walking the fine line of reining in the special ed team without burning any bridges or giving the impression that my daughter doesn't need services. Here we go again - another year of fun, fun, fun.
Remember - DIFFERENT IS BEAUTIFUL!!
Tuesday, September 21, 2010
Father Storms Bus Confronts Bullies
I'm adding a link to an article outlining a recent incident where a father boarded a school bus and confronted the bullies of his disabled daughter. This is an issue that is epidemic in this country - and an issue that is particularly dangerous for already fragile individuals, who seem to be the target of bullying. Children with Asperger's who are socially awkward, often find themselves bullied, as well as socially isolated. It's time that parents hold school and work officials accountable for allowing this culture to continue! While I don't advocate the method with which this dad confronted the bullies involved, I certainly understand the frustration and rage.
Thursday, September 16, 2010
September 16, 2010 - Changes, Changes, Changes
A while back my daughter's therapist told me that children with Asperger's tend to mature in spikes - they might spend a couple of years seemingly behind their peers in maturity and topics of interest and then they'll catch up very quickly, level out for a while and then can fall behind again.
Well, we're going through a spike! My daughter turned thirteen a couple of weeks ago and that seems to have been a catalyst to some changes in attitude and personal appearance.
A couple of months ago she asked me if she could dye her hair purple. I said maybe not her whole head, but would compromise and let her get purple highlights. Her hair turned out great - she loves it. Then she bought make-up with her birthday money - nothing drastic - just light colors. Ok, so I'm still good. Then she asked me to pluck her eyebrows - ok. Then she asked me to curl her hair before school one day. Still ok. And finally, two days ago she wore eyeliner to school! Dark eyeliner!! The next day, I was able to get over my shock enough to make some suggestions about eyeshadow and light lip gloss. My brain is still trying to catch up. This is a girl who I had to harass into the shower two months ago. She rarely showed any interest in fashion, no interest in make-up or her personal appearance. She's always loved to accessorize - which I've always found a contradiction to her otherwise lack of interest in all things fashion - but she loves hats and jewelry. I'm happy that she's finally taking pride in the way that she looks. She has a very strong sense of herself and still doesn't follow trend - which I love about her. So while she's showing an increased interest in dressing and make-up and hair, which is all typical thirteen-year-old behavior, she's not buckling to fashion pressure.
I find myself in the strange position of trying to allow her to be herself and making sure that the amount of make-up that she wears and her new obsession with her hair is balanced and appropriate. Today her therapist made a comment about her eyeliner - in a positive way, but still, letting me know that she noticed. I wanted to ask her if it was appropriate - then realized that that's a parental decision and one that I have to make on my own. I think it's time to have the "boy talk", too. Yikes - not looking forward to that one. I've read that Aspies and other adolescents on the spectrum can be vulnerable in personal relationships, including romantic and/or sexual relationships. This is why it's very important for parents to have a good understanding of how their child is feeling about physical attraction to another person. Making sure that they understand appropriate behavior in these situations will protect them from others who might take advantage of them, as well as guide them in their own behavior and responses to others.
And the journey continues...
Remember - DIFFERENT IS BEAUTIFUL!!
Well, we're going through a spike! My daughter turned thirteen a couple of weeks ago and that seems to have been a catalyst to some changes in attitude and personal appearance.
A couple of months ago she asked me if she could dye her hair purple. I said maybe not her whole head, but would compromise and let her get purple highlights. Her hair turned out great - she loves it. Then she bought make-up with her birthday money - nothing drastic - just light colors. Ok, so I'm still good. Then she asked me to pluck her eyebrows - ok. Then she asked me to curl her hair before school one day. Still ok. And finally, two days ago she wore eyeliner to school! Dark eyeliner!! The next day, I was able to get over my shock enough to make some suggestions about eyeshadow and light lip gloss. My brain is still trying to catch up. This is a girl who I had to harass into the shower two months ago. She rarely showed any interest in fashion, no interest in make-up or her personal appearance. She's always loved to accessorize - which I've always found a contradiction to her otherwise lack of interest in all things fashion - but she loves hats and jewelry. I'm happy that she's finally taking pride in the way that she looks. She has a very strong sense of herself and still doesn't follow trend - which I love about her. So while she's showing an increased interest in dressing and make-up and hair, which is all typical thirteen-year-old behavior, she's not buckling to fashion pressure.
I find myself in the strange position of trying to allow her to be herself and making sure that the amount of make-up that she wears and her new obsession with her hair is balanced and appropriate. Today her therapist made a comment about her eyeliner - in a positive way, but still, letting me know that she noticed. I wanted to ask her if it was appropriate - then realized that that's a parental decision and one that I have to make on my own. I think it's time to have the "boy talk", too. Yikes - not looking forward to that one. I've read that Aspies and other adolescents on the spectrum can be vulnerable in personal relationships, including romantic and/or sexual relationships. This is why it's very important for parents to have a good understanding of how their child is feeling about physical attraction to another person. Making sure that they understand appropriate behavior in these situations will protect them from others who might take advantage of them, as well as guide them in their own behavior and responses to others.
And the journey continues...
Remember - DIFFERENT IS BEAUTIFUL!!
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